bachelor of health (hons)7.1 research question 1- what are the fundamental attributes of a...

ENHANCING QUALITY OF LIFE FOR AGED CARE FACILITY RESIDENTS WITH DEMENTIA:

THE ROLE OF ‘MEANINGFUL ACTIVITIES’

Laura Tierney Bachelor of Health (Hons)

Submitted in fulfilment of the requirements for the degree of

Doctor of Philosophy

School of Nursing

Faculty of Health

Queensland University of Technology

2020

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ i

Keywords

Dementia, meaningful activity, person-centred care, quality of life, residential aged care.

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ ii

Abstract

Background

People living with dementia in residential aged care facilities (RACFs) have reported that

participation in activities is important for their experience of good quality of life (QoL). With

person-centred care the dominant philosophy informing approaches to care for people with

dementia, it is important to consider the perceptions of activities among those participating in

them. While previous literature has used the term 'meaningful activity' and promoted

participation in these types of activities, what makes activities meaningful for RACF residents

with dementia was unclear.

Research design

This study was undertaken in three phases. Phase 1 was a literature-based concept

analysis to review how the term ‘meaningful activity’ was used and understood in the existing

literature. Phase 2 was a secondary quantitative analysis of activity-related data collected from

a national study of QoL of RACF residents with dementia (AusQoL study). The focus of the

analysis was to assess the QoL of RACF residents with dementia as measured by activity

engagement and affect and to explore the RACF and resident characteristics associated with

these aspects of resident QoL. The Phase 2 analysis was followed by Phase 3, a qualitative

study using interviews and focus group interviews to further explore the concept of ‘meaningful

activity’ from the perspectives of RACF residents with dementia, their family members and

RACF staff.

Findings

Phase 1

A search of the existing literature identified 29 relevant papers concerned with and

explicitly using the term ‘meaningful activity’. Synthesis and analysis of the findings and study

conclusions from these papers revealed five key attributes of ‘meaningful activity’: enjoyable;

suited to the skills, abilities and preferences of the individual; related to a personally relevant

goal; engaging; and related to an aspect of the individual’s identity. There are a range of

individual and opportunity factors that influence participation in ‘meaningful activity’. These

factors, such as adequate physical and cognitive abilities and the availability of activity

opportunities and relevant resources, are mediated by adaptation and enablement. While the

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ iii

studies included in this review were predominantly qualitative and did not involve a

quantitative evaluation of the impact of participation in ‘meaningful activity’, qualitative

reports suggest that participation in these activities have a range of positive consequences such

as increased overall activity participation and improved health and QoL.

Phase 2

Data about 396 residents living in 53 Australian RACFs who participated in the AusQoL

study was used in the Phase 2 analysis. On average, residents had the opportunity to participate

in eight of the 15 activities specified in the Activity and Affect Indicators of QoL measure.

Residents had a mean frequency of activity participation score of ten out of 30 and enjoyed

most activities they participated in. Positive affect was observed by staff more often than

negative affect. Multivariate analyses identified the characteristics associated with resident

activity opportunities and frequency of participation as well as resident positive and negative

affect. None of the RACF or resident demographic characteristics were significant variables in

the final regression models related to activity or affect. More severe cognitive impairment and

depression, poorer nutritional status, more frequent incontinence and aggressive agitated

behaviour and not exhibiting non-aggressive verbal behaviour were associated with fewer

activity opportunities. Cognitive impairment, pain and depression had negative effects on the

frequency of activity participation while non-aggressive verbal behaviour had a positive effect.

No depression and less frequent aggressive agitated behaviour were associated with more

frequent positive affect. More severe depression, exhibiting aggressive verbal behaviour and

more frequent agitated behaviour were associated with more frequent negative affect.

Phase 3

The findings of Phase 3 further refined the findings from the Phase 1 literature-based

concept analysis as they relate specifically to the lives of people living with dementia in

RACFs. The findings of this study revealed that the meaning of an activity is highly subjective.

The key attributes that make an activity meaningful include being enjoyable, engaging and

social, suited to the person’s abilities and interests and related to their identity and goals for

participating in activities. Residents need suitable activity opportunities, an enabling

environment and support from family and staff to participate in activities, including

‘meaningful activities’. Participation in ‘meaningful activities’ is valued in this context, with

perceived benefits for the physical and emotional health and wellbeing of residents.

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ iv

Conclusion

This study has addressed important gaps in understanding QoL and ‘meaningful activity’

for RACF residents with dementia. These findings have identified groups of residents who may

have fewer activity opportunities and less frequent participation in activities and also

contributed to the development of a common understanding of 'meaningful activity', with

implications for the care of RACF residents with dementia. The knowledge gained from this

study has the potential to improve the daily lives of people living with dementia in RACFs.

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ v

Table of Contents

Keywords .................................................................................................................................. i

Abstract .................................................................................................................................... ii

Table of Contents ......................................................................................................................v

List of Figures ........................................................................................................................ vii

List of Tables ........................................................................................................................ viii

List of Abbreviations .............................................................................................................. xi

Prologue ................................................................................................................................. xii

Statement of Original Authorship ......................................................................................... xiii

Acknowledgements ............................................................................................................... xiv

Chapter 1: Introduction .............................................................................................1

1.1 Context ............................................................................................................................1

1.2 Background .....................................................................................................................8

1.3 Purpose ...........................................................................................................................9

1.4 Significance ..................................................................................................................10

1.5 Thesis outline ................................................................................................................11

Chapter 2: Literature Review ..................................................................................12

2.1 Philosophies of care in residential aged care ................................................................12

2.2 Quality of life ................................................................................................................20

2.3 Meaningful activity .......................................................................................................26

2.4 Conceptual frameworks relevant to ‘meaningful activity’ ...........................................36

Chapter 3: Research Design .....................................................................................38

3.1 Overview of the research plan ......................................................................................39

3.2 Phase 1- Literature-based concept analysis ..................................................................42

3.3 Phase 2- Secondary quantitative analysis of Australian Quality of Life Study data ....44

3.4 Phase 3- Qualitative study ............................................................................................62

Chapter 4: Phase 1 Findings- Literature-based concept analysis ........................74

4.1 Included papers .............................................................................................................74

4.2 Defining attributes ........................................................................................................80

4.3 Antecedents ..................................................................................................................83

4.4 Consequences ...............................................................................................................83

4.5 Model of ‘meaningful activity’ in older adults with dementia .....................................84

Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data ..........................................................................................................87

5.1 Participant characteristics .............................................................................................87

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ vi

5.2 Bivariate analyses .......................................................................................................104

5.3 Multivariate regression analyses .................................................................................158

5.4 Summary .....................................................................................................................191

Chapter 6: Phase 3 Findings- Qualitative study ..................................................193

6.1 Participant characteristics ...........................................................................................193

6.2 Qualitative findings ....................................................................................................205

6.3 Model of ‘meaningful activity’ for RACF residents with dementia ...........................228

6.4 Summary .....................................................................................................................231

Chapter 7: Discussion .............................................................................................232

7.1 Research question 1- What are the fundamental attributes of a ‘meaningful activity’ for people with dementia? ......................................................................................................................232

7.2 Research question 2- What is the QoL of people living with dementia in RACFs indicated by a) engagement in activity and b) apparent emotions? ...............................................................237

7.3 Research question 3- What is the perceived role of activity, including ‘meaningful activity’ in the QoL of people living with dementia in RACFs?.............................................................238

7.4 Research question 4- What factors enable or inhibit access to, and engagement in, activities, including ‘meaningful activities’? ........................................................................................239

7.5 Research question 5- What strategies are used by staff to a) identify activities meaningful to individual residents and b) create opportunities for resident engagement in these activities?249

7.6 Summary .....................................................................................................................251

Chapter 8: Conclusion ............................................................................................253

8.1 Implications for policy and practice ...........................................................................256

8.2 Strengths and limitations ............................................................................................259

8.3 Future research ...........................................................................................................265

8.4 Conclusion ..................................................................................................................268

Reference List ..........................................................................................................269

Appendices ...............................................................................................................289

Appendix 1 Published concept analysis paper ..................................................................289

Appendix 2 HREC Approval .............................................................................................312

Appendix 3 Participant information sheets and consent forms .........................................314

Appendix 4 Measures used for RACF environment review ..............................................329

Appendix 5 Resident interview quantitative measures ......................................................351

Appendix 6 Resident clinical record review ......................................................................356

Appendix 7 Resident quantitative measures completed by staff informant ......................367

Appendix 8 Family member demographic questions ........................................................379

Appendix 9 Staff focus group demographic questions ......................................................381

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ vii

List of Figures

Figure 3.1. Study overview ........................................................................................40

Figure 3.2. Data collected as part of the AusQoL study with the focus of the current analysis within the red box ...........................................................................46

Figure 3.3. Activities included in the Activity and Affect Indicators of Quality of Life (AAIQOL) measure ......................................................................................57

Figure 3.4. Resident interview schedule ....................................................................68

Figure 3.5. Family member interview schedule .........................................................69

Figure 3.6. Staff focus group interview schedule ......................................................70

Figure 4.1. PRISMA diagram ....................................................................................75

Figure 4.2. Model of ‘meaningful activity’ in older adults with dementia ................85

Figure 5.1. Number of activities participated in by residents over the previous two weeks (n=394) ............................................................................................100

Figure 5.2. Proportion of residents who participated in activities between one and three times per week over the previous two weeks (n=396) ...............................101

Figure 5.3. Proportion of residents who participated in activities more than three times per week over the previous two weeks (n=396) .........................................101

Figure 6.1. Model of ‘meaningful activity’ for RACF residents with dementia .....230

Figure 8.1. Model of ‘meaningful activity’ for RACF residents living with dementia ....................................................................................................................255

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ viii

List of Tables

Table 3.1. Overview of the research plan ...................................................................41

Table 3.2. Quantitative measures from the AusQoL study used in this secondary analysis .........................................................................................................51

Table 4.1. ‘Meaningful activity’ definitions and examples from papers included in the concept analysis ............................................................................................77

Table 5.1. Demographic, staffing and environmental characteristics of RACFs (n=53) ......................................................................................................................88

Table 5.2. Person-centred approach to activity programs ..........................................89

Table 5.3. Resident involvement in decision making .................................................90

Table 5.4. Frequency of activities that take place at the RACF .................................91

Table 5.5. Resident demographic characteristics (n=396)..........................................92

Table 5.6. Demographic characteristics of residents removed from the dataset due to missing activity opportunity data (n=50) and difference compared to included residents (n=396) ..........................................................................................93

Table 5.7. Resident health and care characteristics ....................................................94

Table 5.8. Dementia related behaviour changes among participating residents (categorical variables) ...................................................................................96

Table 5.9. Dementia related behaviour changes among participating residents (continuous variables) ...................................................................................97

Table 5.10. Activity indicators of quality of life (AAIQOL)- Individual items .........99

Table 5.11. Activity indicators of quality of life (AAIQOL)- Scale scores .............100

Table 5.12. Characteristics of residents with zero reported activity opportunities (n=7) ....................................................................................................................103

Table 5.13. Affect indicators of quality of life (AAIQOL)- Scale scores ................104

Table 5.14. Resident activity by RACF characteristics ............................................105

Table 5.15. Correlations between resident activity and RACF characteristics ........107

Table 5.16. Resident activity by RACF activity planning ........................................109

Table 5.17. Resident activity by resident involvement in activity planning ............113

Table 5.18. Resident activity by RACF activity provision .......................................117

Table 5.19. Resident affect by RACF characteristics ...............................................123

Table 5.20. Correlations between resident affect and RACF characteristics ...........124

Table 5.21. Resident affect by RACF activity planning ...........................................125

Table 5.22. Resident affect by resident involvement in activity planning ...............127

Table 5.23. Resident affect by RACF activity provision..........................................130

Table 5.24. Resident activity by resident demographic characteristics ....................135

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ ix

Table 5.25. Resident activity by resident health and care characteristics ................139

Table 5.26. Resident activity by resident dementia related behaviour changes .......147

Table 5.27. Correlations between resident activity and resident dementia related behaviour changes (continuous variables) ..................................................148

Table 5.28. Resident affect by resident demographic characteristics .......................149

Table 5.29. Resident affect by resident health and care characteristics ...................151

Table 5.30. Resident affect by resident dementia related behaviour changes ..........156

Table 5.31. Correlations between resident affect and resident dementia related behaviour changes (continuous variables) ..................................................157

Table 5.32. Correlation between AAIQOL summary scores ...................................158

Table 5.33. Activity opportunity regression models 1 and 2 ....................................159



Table 5.36. Activity opportunity regression models 7, 8 and 9 ................................165

Table 5.37. Activity opportunity regression alternative models 7 and 8 (including wandering behaviour) .................................................................................167

Table 5.38. Activity participation regression models 1 and 2 ..................................169



Table 5.41. Activity participation regression models 7, 8 and 9 ..............................174

Table 5.42. Activity participation regression alternative models 7 and 8 (including wandering behaviour) .................................................................................176

Table 5.43. Positive affect regression models 1 and 2 .............................................177



Table 5.46. Positive affect regression models 7, 8 and 9 .........................................182

Table 5.47. Positive affect alternative regression models 7 and 8 (including wandering behaviour) ...................................................................................................183

Table 5.48. Negative affect regression model 1 .......................................................184

Table 5.49. Negative affect regression model 2 .......................................................185

Table 5.50. Negative affect regression models 3 and 4 ............................................185

Table 5.51. Negative affect regression models 5 and 6 ............................................189

Table 5.52. Negative affect alternative regression models 5 and 6 (including wandering behaviour) ...................................................................................................190

Table 6.1. Participants in each RACF ......................................................................193

Table 6.2. RACF characteristics (n=4) .....................................................................194

Table 6.3. Resident demographic characteristics (n=19)..........................................195

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ x

Table 6.4. Resident health and care characteristics (n=19) ......................................197

Table 6.5. Dementia related behaviour changes among residents (n=19) ................199

Table 6.6. Dementia related behaviour changes among residents (continuous variables) ....................................................................................................................199

Table 6.7. Activity indicators of quality of life (AAIQOL)- Individual items (n=19).. ....................................................................................................................201

Table 6.8. Activity and affect indicators of quality of life (AAIQOL)- Scale scores (n=19).. .......................................................................................................202

Table 6.9. Family member demographic characteristics (n=17) ..............................203

Table 6.10. Staff demographic characteristics (n=15) ..............................................204

Table 6.11. Themes and subthemes of ‘meaningful activity’ defining attributes, antecedents and consequences ....................................................................207

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ xi

List of Abbreviations

AAIQOL Activity and Affect Indicators of Quality of Life

ACFI Aged Care Funding Instrument

ACT Australian Capital Territory

ADL Activities of Daily Living

ANOVA Analysis of variance

AusQoL study Australian Quality of Life study

CMAI Cohen Mansfield Agitation Inventory

CS-GDS Collateral Source Geriatric Depression Scale

DEMA Daily Engagement of Meaningful Activities Intervention

DT Diversional therapy

EAT Environmental Audit Tool

EN Enrolled nurse

ESC Evaluation to Sign Consent measure

MMSE Mini-Mental State Examination

MNA-SF Mini-Nutritional Assessment Short Form

OT Occupational therapy

PAINAD Pain Assessment in Advanced Dementia Scale

PCA Personal care assistant

PCECAT Person-Centred Environment and Care Assessment Tool

POLIF Policy and Program Information Form

QoL Quality of life

QoL-AD Quality of Life in Alzheimer’s Disease instrument

RACF Residential aged care facility

RAWS-LTC Revised Algase Wandering Scale- Long Term Care Version

RN Registered nurse

TAP Tailored Activity Program

UK United Kingdom

US United States

VBS Verbal Behaviour Scale

3MS Modified Mini-Mental State Examination

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ xii

Prologue

This study and thesis are my original work with support and contributions from my

supervisory team as outlined below:

Study design- I designed the overall study in consultation with Prof Elizabeth Beattie.

The data used in Phase 2 was from the AusQoL study which was originally designed by the

AusQoL group (Prof Elizabeth Beattie, Prof Lynn Chenoweth, Assoc Prof Deirdre

Fetherstonhaugh, Dr Elaine Fielding, Assoc Prof Barbara Horner, Prof Wendy Moyle, Dr

Maria O'Reilly, and Prof Andrew Robinson). However, the analysis of this data in Phase 2 was

original to this study and had not be previously undertaken. I designed the analysis plan in

consultation with Dr Elaine Fielding and Prof Elizabeth Beattie.

Ethics submission- I drafted the ethics submission and associated documents with critical

review and feedback from all supervisors.

Data collection- I independently collected Phase 1 and Phase 3 data. The data used in

Phase 2 was collected by a team of research assistants for the national AusQoL study. As part

of my previous role as a research assistant at the University of Tasmania, I collected all the

data from Tasmanian AusQoL study participants.

Data analysis- I undertook data analysis for all phases of this study with support from

Prof Elizabeth Beattie. I received additional support from Dr Elaine Fielding for Phase 2

analysis and additional support from Dr Margaret MacAndrew and Dr Kathleen Doherty for

Phase 3 analysis.

Thesis- I drafted all thesis chapters with critical review, feedback and editing support

from all supervisors.

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ xiii

Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet requirements

for an award at this or any other higher education institution. To the best of my knowledge and

belief, the thesis contains no material previously published or written by another person except

where due reference is made.

Signature:

Date: 18 April 2020

QUT Verified Signature

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ xiv

Acknowledgements

Undertaking this PhD would not have been possible without the support and guidance of

many people.

I would like to say a very big thank you to my supervisors, Prof Elizabeth Beattie, Dr

Elaine Fielding, Dr Kathleen Doherty and Dr Margaret MacAndrew. You have been wonderful

mentors and have helped me to grow as a researcher. I am so grateful to have had the

opportunity to work closely with you all and look forward to working with you in the future.

Elizabeth, your dedication to improving care for people with dementia inspires me to

make a difference. Thank you for your guidance, patience and support. Elaine, your attention

to detail is amazing. Thank you for sharing your passion for quantitative research with me, I

really enjoyed working with you on the analysis. Kathleen, I am so grateful for your constant

support and advice as well as the huge effort you put into proofreading my final draft. Margie,

thank you for your insightful comments and for asking hard questions that helped me to think

about my research from a more abstract perspective.

I would like to especially thank Prof Andrew Robinson for encouraging me to take on

this challenge and believing in me. I am so grateful for all the opportunities you have given

me.

I would like to thank my colleagues at the Wicking Dementia Research and Education

Centre, University of Tasmania. Thank you for your encouragement, for the many cups of tea

and coffee and for listening to me practice my presentations over the years.

Thank you to my fellow PhD candidates. Special thanks to Ron, Azam and Deborah.

Sharing the highs and lows of this journey with you has made it easier and so much more

enjoyable.

I am grateful for the Australian Government Research Training Program Scholarship I

received through QUT that allowed me to focus on my PhD.

Many, many thanks to the participants involved in this study. To the staff at the RACFs-

thank you for making me feel welcome and taking the time to give me directions, introduce me

to residents and share your experiences with me. The passion you have for your work is

inspiring. To the residents and family members- thank you for sharing your stories and

experiences so openly with me, it was such a privilege.

Enhancing quality of life for aged care facility residents with dementia: The role of ‘meaningful activities’ xv

Thank you to my parents, Maurice and Linda. Thank you for encouraging my curiosity

and love of learning from a young age and for continuing to support me. I’ve come a long way

from making up my own research assignments in the school holidays.

A very special thank you to my husband, Ray. Thank you for being patient and

understanding when I’ve been busy working and for believing in me when I needed extra

encouragement. Thank you for your unwavering support, I wouldn’t have made it through the

last few years without you.

Finally, my deepest gratitude to the one who gives complete and lasting meaning in life.

Chapter 1: Introduction 1

Chapter 1: Introduction

Quality of life (QoL) is regarded as an important outcome and measure of care,

particularly for people living with dementia as there is currently no cure or effective treatment

for the condition. Participation in activities is one component of QoL of those living with

dementia in residential aged care facilities (RACFs). Residents have reported that participation

is important for them to experience a good QoL. While general participation in activities is

valued, there is growing interest in the concept of ‘meaningful activities’ for RACF residents

with dementia and encouraging participation in these types of activities. In response to gaps in

the literature, the aims of this thesis were to investigate QoL of RACF residents with dementia

as indicated by activity participation and observed affect and explore what makes activities

meaningful in this context. This introductory chapter begins with a description of the context

of the research. The sections following outline the background, purpose and significance of the

research and provide an overview of the remaining chapters of the thesis.

1.1 CONTEXT

This section provides a context for the research by describing what is currently known

about dementia in relation to prevalence, the impact of dementia, diagnosis, progression and

symptoms. This is followed by an overview of the aged care system and the key characteristics

of RACF residents and the RACF workforce.

1.1.1 Dementia

Dementia is a major global health concern. A recent systematic review and meta-analysis

of dementia prevalence studies estimated that over 46 million people currently live with

dementia worldwide (Alzheimer's Disease International, 2015). In 2018, there were

approximately 376,000 Australians with dementia (Australian Institute of Health and Welfare,

2018a). In reality, there may be an even greater number of people with dementia as prevalence

estimates rely on self report identification and are unlikely to include many people with the

early stages of the condition (Deloitte Access Economics, 2011). The prevalence of dementia

increases with age with approximately 10% of Australians aged 65 years and older having


dementia and 30% of those aged 85 years and older having dementia (The Institute of

Governance and Policy Analysis, 2017). Of all Australians with dementia, 70% are over 85

years of age (The Institute of Governance and Policy Analysis, 2017). Dementia prevalence

projections suggest that, due to the ageing of the population, by 2030 there will be

approximately 550,000 Australians with dementia (Australian Institute of Health and Welfare,

2018a), and this number will increase to almost 950,000 by 2050 (Deloitte Access Economics,

2011). However, there is some recent evidence that suggests that dementia prevalence is stable

or even declining in some populations including Australia, the United Kingdom (UK), the

United States (US), several European countries and Nigeria (Harrison et al., 2019; Wu et al.,

2017). If this is borne out, then the projected future numbers of people with dementia could be

lower than current estimates.

Dementia is the leading cause of disability among Australians over 65 years of age, the

leading cause of death for females and the second leading cause of death in Australia overall

(Australian Institute of Health and Welfare, 2018a, 2018b). In 2016, the annual direct cost of

dementia in Australia was estimated to be AU$8.8 billion (The Institute of Governance and

Policy Analysis, 2017). This included direct medical costs such as hospital, primary care,

specialist care and pharmaceuticals as well as non-medical expenses such as home care, RACF

care and transportation. In addition to the formal services and care provided to people with

dementia, there are also an estimated 200,000 primary carers of people with dementia living in

the community who are predominantly the partner or adult child of the person with dementia

for whom they care (The Institute of Governance and Policy Analysis, 2017).

Despite the common misconception in the community that dementia is a normal part of

aging, it is, in reality, a pathological process (Cahill, Pierce, Werner, Darley, & Bobersky,

2015; Kenigsberg et al., 2016). Dementia is caused by damage to nerve cells in the brain called

neurons (Alzheimer's Association, 2017). It is an umbrella term used to describe a condition

which includes more than 100 different diseases (Australian Institute of Health and Welfare,

2012a). The most common of these diseases are Alzheimer’s Disease, Vascular Dementia,

Lewy Body Dementia and Frontotemporal Dementia (Australian Institute of Health and

Welfare, 2012a). Many people diagnosed with dementia have a combination of these diseases

and the commonly termed “mixed dementia” refers to people with both Alzheimer’s Disease

and Vascular Dementia (Australian Institute of Health and Welfare, 2012a). Among residents

of Australian RACFs, Alzheimer’s disease accounts for approximately 75% of dementia, while

the next most common type is Vascular dementia which accounts for 10% of all cases of


dementia in RACFs (Australian Institute of Health and Welfare, 2012a). Similar figures have

been reported for the US (Alzheimer's Association, 2017).

The clinical diagnosis of dementia is complex as there is no single diagnostic test

(Alzheimer's Association, 2017). Neuroimaging techniques and diagnostic biomarkers are

being explored in research but do not yet have a level of accuracy that allows for their use in

clinical practice (Alzheimer's Association, 2017; Kenigsberg et al., 2016). Current diagnostic

practices focus on comprehensive cognitive and medical evaluations done in memory clinics,

general practice, RACFs and hospital settings (Alzheimer's Association, 2017; Kenigsberg et

al., 2016). The most commonly used cognitive evaluation instrument is the Mini-Mental State

Examination (MMSE) which measures orientation, registration, attention and calculation,

recall and language abilities (Folstein, Folstein, & McHugh, 1975; Ismail, Rajji, & Shulman,

2010). However, the tool has numerous limitations making it less accurate or sensitive when

used to evaluate the cognitive abilities of people with high intelligence, high or low levels of

education in earlier life, impairments in sensory abilities or people from foreign cultures (Ismail

et al., 2010). The Modified Mini-Mental State (3MS) Examination was developed to address

some of these limitations (Teng & Chui, 1987). Other commonly used instruments include the

Mini-Cog, Memory Impairment Screen, General Practitioner Assessment of Cognition, the

clock drawing test, Montreal Cognitive Assessment and the Rowland Universal Dementia

Assessment Scale (Brodaty, Low, Gibson, & Burns, 2006; Ismail et al., 2010). Importantly,

these instruments cannot be used in isolation as a basis for a diagnosis (Brodaty et al., 2006).

A positive result requires further evaluation before a definitive diagnosis of dementia can be

made.

There are a range of symptoms that a person with dementia may experience, with the

type and severity of symptoms often varying between individuals (Haaksma et al., 2018;

Tolman & Morrissey, 2016). Dementia is typically characterised by impairments to the brain

which may manifest as language difficulties, loss of memory, changes in perception, judgement

and personality, functional and physical impairments and neuropsychiatric symptoms (Annear

et al., 2015; Australian Institute of Health and Welfare, 2012a; Haaksma et al., 2018; Tolman

& Morrissey, 2016). Functional impairment is a defining feature of dementia as suggested by

the following definition of the condition: “dementia is defined as declines in multiple cognitive

domains sufficient to interfere with daily functioning” (Committee on Aging Frontiers in Social

Psychology Personality and Adult Developmental Psychology, 2006; p70). Physical and

cognitive abilities can fluctuate on a weekly, daily or even hourly basis (Tolman & Morrissey,


2016) which can be particularly challenging for those who care for people with dementia. Basic

bodily functions including walking and swallowing can be impaired as dementia progresses as

more neurons in the brain are damaged or destroyed (Alzheimer's Association, 2017).

In addition to the cognitive and functional symptoms, there are a diverse range of

symptoms that are commonly associated with dementia that have been grouped under the

umbrella term dementia related behaviour changes. Alternative terms that are sometimes used

for dementia related behaviour changes include behavioural and psychological symptoms of

dementia, responsive or disruptive behaviours, neuropsychiatric symptoms and needs-driven

dementia-compromised behaviours (Algase et al., 1996; Brodaty, Draper, & Low, 2003;

Legere, McNeill, Schindel Martin, Acorn, & An, 2018). Dementia related behaviour changes

include psychological symptoms such as depression, anxiety and apathy, psychotic symptoms

such as delusions and hallucinations, and behaviours such as agitation, disinhibition,

aggression, vocally disruptive behaviour and wandering behaviour (Brodaty et al., 2003;

Cerejeira, Lagarto, & Mukaetova-Ladinska, 2012; Savva et al., 2009; van der Linde et al.,

2016; von Gunten, Alnawaqil, Abderhalden, Needham, & Schupbach, 2008). Most individuals

with dementia experience dementia related behaviour changes at some stage in the course of

the condition (Cerejeira et al., 2012; Savva et al., 2009; van der Linde et al., 2016) and they are

particularly common in the RACF context, with over 90% of residents experiencing at least

one dementia related behaviour change (Brodaty et al., 2001). The most commonly reported

dementia related behaviour changes include apathy, depression, anxiety and agitation

(Cerejeira et al., 2012). Dementia related behaviour changes tend to present chronically, often

peaking in individuals with moderate dementia and sometimes declining as dementia becomes

more severe (Cerejeira et al., 2012; van der Linde et al., 2016). They are often a cause of

concern or distress in individuals with dementia and their carers and can have a significant

impact on relationships (Cerejeira et al., 2012; Legere et al., 2018). Possible causes of these

behaviour changes include dementia related neurological changes in the brain, over-

stimulation, under-stimulation, pain, illness, fatigue, loneliness and unmet needs (Algase et al.,

1996; Cerejeira et al., 2012; Legere et al., 2018; von Gunten et al., 2008).

Management of dementia related behaviour changes is complex, often involving a

combination of pharmacological and non-pharmacological interventions tailored to the needs

and preferences of each individual (Cerejeira et al., 2012; von Gunten et al., 2008). The

recommended first approach to managing dementia related behaviour changes is non-

pharmacological interventions (Guideline Adaptation Committee, 2016). These include


emotion-oriented interventions such as reminiscence therapy, sensory stimulation

interventions, behaviour management and psychosocial interventions such as animal-assisted

therapy (Cerejeira et al., 2012). Leisure activities, entertainment, group activities and exercise

have also been used as non-pharmacological interventions to manage dementia related

behaviour changes (Backhouse, Killett, Penhale, & Gray, 2016; Kolanowski, Litaker, Buettner,

Moeller, & Costa, 2011; Van Haitsma et al., 2015). Pharmacological management of dementia

related behaviour changes can involve the use of a range of medications including

antipsychotics, antidepressants, anticonvulsants, cholinergic inhibitors, benzodiazepines and

memantine (Cerejeira et al., 2012). Regardless of the intervention used, carer education is

important for understanding the potential reasons behind dementia related behaviour changes

in individuals and managing the behaviour changes in a person-centred way (Legere et al.,

2018). This style of management can potentially reduce the prevalence and severity of

dementia related behaviour changes (Brodaty et al., 2003)

Dementia is a progressive, life-limiting condition (Alzheimer's Association, 2017;

Mitchell et al., 2009; Tolman & Morrissey, 2016). Prognosis is difficult because of the diversity

of symptoms and variable symptom progression (Haaksma et al., 2018). On average, people

aged 65 years or older live between four and eight years from the time of a dementia diagnosis

(Alzheimer's Association, 2017). There is currently no cure or effective treatment for dementia,

so management takes a palliative approach, focusing on symptom control and the individual’s

QoL (Kenigsberg et al., 2016; Tolman & Morrissey, 2016; Volicer & Simard, 2015). However,

the understanding of dementia as a terminal illness requiring palliative care is not as widespread

and accepted among clinicians as for cancer for example. This may lead to some people with

dementia undergoing treatments or interventions that may be considered as unnecessary and

onerous (Dening, 2016; Lillyman & Bruce, 2016; Mitchell et al., 2009; Nazarko, 2014). This

also means that the number of deaths from dementia may be underestimated as acute conditions

such as pneumonia may be reported as the cause of death rather than dementia where it is the

underlying cause of the acute condition and therefore death (Alzheimer's Association, 2017).

The literature presents many options for understanding the progression of dementia. The

Clinical Dementia Rating (Morris, 1993) proposes five stages while the Global Deterioration

Scale for Assessment of Primary Degenerative Dementia (Reisberg, Ferris, de Leon, & Crook,

1982) and the Functional Assessment Staging in Alzheimer’s Disease (Sclan & Reisberg, 1992)

both outline seven stages of progression. Dementia is often understood as progressing through

three stages. The first stage is referred to as early or mild dementia while the second stage is


middle or moderate dementia and the third stage is referred to as late, severe or advanced

dementia (Alzheimer's Association, 2019; Dementia Australia, 2019a).

1.1.2 Residential aged care context

Australia’s aged care system is made up of residential aged care along with community

care and flexible care services (Australian Institute of Health and Welfare, 2012b). In Australia,

residential care services are most commonly known as residential aged care facilities (RACFs)

but they are also known as nursing homes, care homes and long-term care facilities. Access to

RACFs can be on a permanent or respite basis and is approved by Aged Care Assessment

Teams who provide multidisciplinary assessment of individual care needs (Australian Institute

of Health and Welfare, 2012b). The care needs of residents receiving permanent care are

assessed by RACF staff using the Aged Care Funding Instrument (ACFI), and the outcomes of

these assessments are used to calculate the funding entitlements of the RACF (Australian

Institute of Health and Welfare, 2012b). RACFs provide a variety of services including

accommodation, personal care, nursing care and non-clinical services such as laundry and

meals.

In 2018, there were approximately 2,700 RACFs in Australia, providing care for almost

200,000 people at any one time (Aged Care Financing Authority, 2019). The geographic

distribution of RACFs is roughly aligned with population density and distribution, with a

majority of RACFs (approximately 62%) located in major cities across Australia (Australian

Institute of Health and Welfare, 2018d). In recent years, RACFs have been increasing in size

and in 2018, 75% of RACFs in Australia had greater than 60 places (Aged Care Financing

Authority, 2019). RACFs are the permanent home for 9% of Australians aged 70 years and

over and 30% of Australians aged 85 years and over (Department of Health, 2015).

Approximately 240,000 older Australians lived as a permanent resident of an RACF at

some time in the year 2017-2018 (Department of Health, 2018). In 2016 there were

approximately 90,000 people living with dementia in Australian RACFs (The Institute of

Governance and Policy Analysis, 2017). While data on RACF residents with dementia is

unavailable, the characteristics of the broader RACF resident population have been reported.

Among all permanent residents, the average age of admission into permanent care was 82 years

for men and 85 years for women (Department of Health, 2018). A 2011 report on RACF

resident characteristics from the Australian Institute of Health and Welfare stated that 70% of


residents were female and 57% were aged 85 years and over (Australian Institute of Health and

Welfare, 2012b). Of the female permanent residents in 2011, approximately two-thirds

reported being widowed, one-fifth were married or in a de facto relationship and only a small

proportion reported being single. Male permanent residents were most likely to be married or

in a de facto relationship (almost half), followed by a quarter reporting being widowed and

15% single. Over 70% of residents were born in Australia with an additional 10% born in the

UK, Ireland or New Zealand. This is reflected in the majority reporting English as their

preferred language. Prior to admission as a permanent resident of an RACF almost half had

lived alone with most of the remaining residents previously residing with family. Dementia is

reported as a major reason for admission to RACFs (Australian Institute of Health and Welfare,

2018c). Almost 60% of permanent residents with an ACFI appraisal have been assessed as

needing a high level of care with activities of daily living while 64% have a high level of care

needs in the area of cognition and behaviour (Australian Institute of Health and Welfare,

2018c).

In 2017, the National Institute of Labour Studies reported on the National Aged Care

Workforce Census and Survey which sought to examine the structure of the aged care

workforce, characteristics of the direct care workers, their training and pathways leading them

to work in aged care (Mavromaras et al., 2017). There were over 230,000 workers in the

Australian residential aged care industry in 2016, with just over 150,000 of those involved in

care-related roles (referred to as direct care workers). Personal care assistants (PCAs, also

known as carers) are the largest occupational group, accounting for almost 70% of workers

involved in the direct care of residents. Registered (RN) and enrolled nurses (EN) account for

an additional quarter of aged care workers with allied health professionals and allied health

assistants accounting for the remaining 5%. In recent years, the proportion of PCAs employed

in RACFs has increased while the proportion of RNs and ENs has decreased. The direct care

workforce in residential aged care is older than the broader Australian workforce with 27%

aged 55 years or over. The majority (87%) of direct care workers are female (King et al., 2012).

As would be expected, RNs have the highest post-secondary qualifications with most attaining

a degree-level qualification (75%) (Mavromaras et al., 2017). Most ENs hold a Certificate IV

or diploma (82%) while PCAs typically hold either a Certificate III (79%) or IV (24%) in Aged

Care. The National Aged Care Workforce Census and Survey also revealed that much of the

direct care workforce is employed on a permanent part-time basis (78%) with a recent shift

away from casual employment arrangements.


The aged care system is currently the focus of increased attention and scrutiny in

Australia. The Royal Commission into Aged Care Quality and Safety was announced in 2018

in response to negative media coverage and community dissatisfaction with aged care services

not meeting expectations of quality and safety (Parkinson & Radford, 2019; Royal Commission

into Aged Care Quality and Safety, 2018). The Commission is assessing the scale and degree

of substandard care throughout the Australian aged care system (Royal Commission into Aged

Care Quality and Safety, 2019). While the work of the Commission will highlight deficiencies

in the care of older Australians, including in RACFs, it will also provide an opportunity to

improve care, focusing on quality and evidence-based care (Strivens & Stirling, 2019). Activity

opportunities and participation, including the meaningful engagement of RACF residents, has

arisen in witness statements to the royal commission as important aspects of quality care.

1.2 BACKGROUND

It is evident that dementia is a priority for the Australian health and aged care systems

and the community more broadly. It is within this context of complex health conditions and

high care needs of people living with dementia that the concepts of QoL and ‘meaningful

activity’ will be explored. QoL of people living with dementia is particularly important in the

absence of an effective treatment or cure for dementia (Beattie et al., 2015). There are many

ways QoL can be measured including objective measures of life circumstances and behaviours

as well as subjective perceptions of one’s life (Logsdon & Albert, 1999). Assessments of QoL

can involve self report and proxy report (Logsdon, Gibbons, McCurry, & Teri, 2002). For

people with dementia, measures of QoL that can be observed and reported by a proxy are

valuable because cognitive impairment can limit a person’s ability to communicate their

perceptions of their own QoL (Logsdon et al., 2002). Two approaches used for proxy report of

QoL among people with dementia are activity opportunities and participation and observed

affect (Albert, Del Castillo-Castaneda, Sano, & Jacobs, 1996). RACF residents themselves

have reported that being involved in activities is important for them to experience a good QoL

(Moyle, Fetherstonhaugh, Greben, Beattie, & AusQoL Group, 2015). While there are many

studies examining QoL among RACF residents with dementia, there is a need for a large study

exploring associations between resident activity and affect and a broad range of RACF and

resident characteristics. This type of study would provide insight into the QoL of RACF


residents with dementia and help to identify groups of residents who may be experiencing a

poorer QoL as suggested by their participation in activities and observed affect.

With person-centred care being the most widely accepted philosophy guiding dementia

care, there is recognition in policy, practice and research of the importance of respecting

personhood and individuality, focusing on individuals’ abilities rather than impairments and

challenging ideas of dependency among people with dementia (Brooker, 2004; Nolan, Davies,

Brown, Keady, & Nolan, 2004). A rise in person-centred care awareness across the sector has

led to increasing focus on activities that are individualised, tailored and preference driven

(Edvardsson, Fetherstonhaugh, & Nay, 2010; Edvardsson, Varrailhon, & Edvardsson, 2014;

Han, Radel, McDowd, & Sabata, 2016b; Van Haitsma et al., 2015). This also includes

considering the perceptions and value of activities and activity participation for people living

with dementia in addition to assessments of activity participation (Aged Care Quality and

Safety Commission, 2018; Eakman, Carlson, & Clark, 2010b; Han, Radel, McDowd, & Sabata,

2016a; Phinney, Chaudhury, & O'Connor, 2007). So it is not only activities or individualised

activities that are important for people with dementia, but activities that have meaning for the

person that is an essential element of person-centred care (Edvardsson et al., 2010). This has

led to a growing interest in the concept of ‘meaningful activity’. However, it is a term that is

not used consistently (Mansbach, Mace, Clark, & Firth, 2017) and needs to be further explored,

particularly in the context of those living with dementia in RACFs.

1.3 PURPOSE

In response to these gaps in the existing literature, the overall aim of this research is to

understand QoL among people living with dementia in Australian RACFs and explore what

makes activities meaningful for them. The following research questions will be investigated in

relation to people living with dementia in RACFs:

1. What are the fundamental attributes of a ‘meaningful activity’ for people with

dementia?

2. What is the QoL of people living with dementia in RACFs indicated by a)

engagement in activity and b) apparent emotions?

3. What is the perceived role of activity, including ‘meaningful activity’, in the QoL

of people living with dementia in RACFs?


4. What factors enable or inhibit access to, and engagement in, activities, including

‘meaningful activities’?

5. What strategies are used by RACF staff to a) identify activities meaningful to

individual residents and b) create opportunities for resident engagement in these

activities?

The second research question will be addressed by a secondary analysis of an existing

dataset. The data was collected for a broader landmark national study of QoL of RACF

residents with dementia (Beattie et al., 2015). The overall study and the specific analysis

undertaken as part of this PhD study will be described in more detail in Chapter 3. Importantly,

previous analyses using the dataset have not considered resident activity participation and

affect, the unique focus of this analysis.

1.4 SIGNIFICANCE

This study will contribute to the body of knowledge on QoL and ‘meaningful activity’

for people living with dementia in RACFs. There are several gaps in the literature that this

study will address. Existing research about activities in the RACF context has focused on

activity provision at the RACF level or associations between activity participation and selected

RACF and resident characteristics. Using data from a nationally-representative study of QoL,

this work included a wide range of RACF and resident characteristics allowing for predictions

about what factors were associated with resident activity. ‘Meaningful activity’ is a widely-

used term but what the concept consists of has not been comprehensively addressed. The

concept analysis of ‘meaningful activity’ undertaken as part of this study is the first focused

and systematic analysis of the concept aiming to produce a definition and model of the concept.

It contributes to moving the literature forward in this area and to the development of a model

of the concept as it relates to older adults living with dementia. This work will also support

RACF staff to differentiate ‘meaningful activity’ from other types of activity. This is the first

step towards increasing the participation of residents with dementia in ‘meaningful activity’.

Using insights gained from this study, future research may construct and test the theoretical

relationships identified between ‘meaningful activity’ and outcome variables such as improved

function and emotional wellbeing for this population. This will include considering how

changes in QoL can be achieved and sustained through resident participation in ‘meaningful

activity’.


1.5 THESIS OUTLINE

Chapter 1 has introduced the context and outlined the purpose and significance of the

study. Chapter 2 of this thesis reviews the literature on philosophies of care in RACF, QoL and

‘meaningful activity’. Chapter 3 outlines the methodology of this study which was undertaken

in three phases. The first phase of this study was a literature-based concept analysis of

‘meaningful activity’. The findings of this phase are reported in Chapter 4. The findings of the

secondary quantitative analysis of activity and affect-related data from the Australian Quality

of Life Study are presented in Chapter 5. This will be followed in Chapter 6 by the findings of

the Phase 3 qualitative study. Chapter 7 integrates and discusses the findings of all three phases.

Concluding remarks are presented in Chapter 8.

Chapter 2: Literature Review 12

Chapter 2: Literature Review

This chapter provides a critical review of the literature relevant to QoL and ‘meaningful

activity’ for people living with dementia in RACFs. The first section focuses on the varying

philosophies of care in RACFs from the traditional medical model of care to discussing

emerging person-centred approaches to care. This is followed by a review of the literature on

QoL including its conceptualisation, measurement and factors that influence QoL of residents

in RACFs. Third, the growing body of research on ‘meaningful activity’ is critiqued with

consideration of how the concept is defined and measured, the potential effects of ‘meaningful

activity’ and ‘meaningful activity’ in the RACF setting. Finally, the conceptual frameworks

related to the topic of this study are reviewed. Combined, this provides a comprehensive

overview of the literature underpinning this study.

2.1 PHILOSOPHIES OF CARE IN RESIDENTIAL AGED CARE

Philosophies of care influence the care people receive by shaping understandings of

disease, beliefs about those being cared for and views about the appropriate focus of care. This

section briefly describes the traditional medical model of care and then discusses the

philosophy of person-centred care in more detail with examples of how it has been applied in

dementia care.

2.1.1 Medical model of care

Traditionally, healthcare has focused on a scientific understanding of diseases along with

an emphasis on cure (McCormack, 2003). This has been mirrored in RACFs with care

following a medical model valuing efficiency, consistency of care and decision making by

medical experts (Brooker, 2004; Brownie & Nancarrow, 2013). This approach assumes that

diseases follow consistent patterns which can be managed with standard management plans

and fails to recognise the uniqueness of individuals and their experience of illness and care

(Hebblethwaite, 2013). This focus is evident in practices where residents are required to adhere

to rigid organisational routines or processes (McCormack, 2003, 2004). These tend to benefit

and serve the needs of the organisation with less regard for individual beliefs and values


(McCormack, 2003, 2004). With a focus on medical interventions to treat physical needs, there

is often a failure to acknowledge or manage the psychosocial needs of residents resulting in

experiences of loneliness, helplessness and boredom (Barba, Tesh, & Courts, 2002;

Edvardsson, Winblad, & Sandman, 2008).

2.1.2 Person-centred care

Many older adults move to a RACF because of a growing need for nursing care and

support (De Bellis, 2010). Residents are moving into RACFs with more complex health

conditions and higher levels of dependency (De Bellis, 2010). In 2001, 79% of older adults

moving into UK long term care facilities had high levels of physical frailty while 44% were

categorised as cognitively frail (Bebbington, Darton, & Netten, 2001). Despite this, there has

been a philosophical shift in healthcare from a focus on cure to a more holistic approach that

is driven by the rights of individuals (McCormack, 2003). In RACFs this shift is evident in the

facilities being increasingly recognised as the home of their residents and the view that

residents’ lives in the RACF should be as similar as possible to what they would be if they

continued to live in their private homes (Murphy, Shea, & Cooney, 2007). This has been

reflected in changing models of care in aged care settings, many of which are informed by the

tenets of person-centred care.

Person-centred care is a philosophy that is commonly used in policy documents and the

nursing literature (Nolan et al., 2004). Person-centredness was first discussed in the 1940s by

American psychologist, Carl Rogers and the philosophy has been further developed and refined

over the last eight decades (Edvardsson et al., 2008; Morgan & Yoder, 2012). Commonly

acknowledged elements of person-centred care include recognition of personhood and respect

for individuality, a therapeutic relationship between the caregiver and patient which is built on

mutual trust, facilitates negotiation of care and empowers individual decision making,

independence and autonomy and an approach to care that focuses on the individual’s strengths

rather than their impairments (Brooker, 2004; McCormack, 2003; Morgan & Yoder, 2012;

Nolan et al., 2004; Slater, 2006). A person-centred approach to care is thought to facilitate

meeting frequently unmet needs of residents such as stimulation and social interaction (van der

Ploeg et al., 2013). While routine scheduling of daily activities such as eating, bathing and

sleeping are seen as barriers to the implementation of person-centred care, in reality, it is more

complex than individualised care that caters for preferences in these areas (Hebblethwaite,


2013; McCormack, 2003). A person-centred approach requires the caregiver to seek an

understanding of the context of a person’s life to better recognise their beliefs and values and

to consider how they make sense of their experience of illness and care (McCormack, 2003,

2004).

Person-centred approaches to care have emerged in diverse healthcare settings such as

rehabilitation (Dean, Siegert, & Taylor, 2012), palliative care (Pringle, Johnston, & Buchanan,

2015), mental health (Corrigan, 2015; Tondora, Miller, Slade, & Davidson, 2014), dentistry

(Mills, Frost, Kay, & Moles, 2015), primary care (Hansen, Walters, & Howes, 2016) and

dementia care (Nolan et al., 2004). Depending on the setting, the terms patient-centred or

resident-centred care may also be used (Morgan & Yoder, 2012). Kitwood was the first to apply

Rogers’ person-centred approaches to care to people with dementia (Brooker, 2004; Brownie

& Nancarrow, 2013). Within this context, it is based on a symbolic interactionist understanding

of personhood where, as dementia progresses, an individual’s sense of self is changed rather

than lost (Edvardsson et al., 2008). It challenges the long-held belief of dependency among

older adults, particularly those experiencing cognitive changes (McCormack, 2003).

Various models of care have been developed in dementia care and RACF settings in

response to the shift towards a person-centred care approach including the Eden Alternative

(Barba et al., 2002; Bergman-Evans, 2004), the Montessori method (Sheppard, McArthur, &

Hitzig, 2016; van der Ploeg et al., 2013), Green Care Farms (de Boer et al., 2015; de Boer,

Hamers, Zwakhalen, Tan, Beerens, et al., 2017) and the Butterfly Home Model (DeSantis,

2015; Sheard, 2015b).

Eden Alternative

One approach to person-centred care is the Eden Alternative. The model was developed

in response to the loneliness, helplessness and boredom often observed in RACF residents and

the negative effects these have on resident QoL (Bergman-Evans, 2004). The approach

advocates for RACFs to be primarily a nurturing home-like environment rather than a

healthcare setting (Barba et al., 2002). The role of organised activity programs is downplayed

and resident contact with pets, plants and children is prioritised to normalise their everyday life

while providing companionship and encouraging spontaneity (Ausserhofer et al., 2016;

Bergman-Evans, 2004; Hinman & Heyl, 2002). There is a decentralised management structure

where caregivers closest to the residents are encouraged to be involved in decision-making


along with residents themselves (Barba et al., 2002; Bergman-Evans, 2004). The relationship

between the resident and caregiver is seen as reciprocal with residents empowered to contribute

to as well as receive care (Barba et al., 2002; Bergman-Evans, 2004).

Despite increasing discussion of the Eden Alternative as a positive model of care for

RACFs, there are limited studies examining its effectiveness. A recent scoping review

exploring the impact of home-like residential care models identified five studies between 1994

and 2014 comparing the Eden Alternative to usual care in RACFs (Ausserhofer et al., 2016).

Collectively these studies reported no difference in physical functioning of residents, nutrition-

related outcomes, medication use, the prevalence of pressure ulcers or behavioural symptoms

between the groups. There were mixed findings on the effect of the Eden Alternative on social

activities and mood. Two studies reported statistically significant reductions in feelings of

boredom, loneliness, helplessness and depression in residents living in Eden Alternative

facilities compared to traditional RACFs (Bergman-Evans, 2004; Robinson & Rosher, 2006).

These findings are important considering that the approach was developed in response to the

prevalence of these emotions among RACF residents.

Montessori Method

Another approach is the Montessori method, originally developed for educating children

and first applied to programming activities for people with dementia in the 1990s (Sheppard et

al., 2016). Under this approach, activities are tailored to the interests and abilities of individuals

using the rehabilitation principles of task breakdown, repetition and modifying tasks to

progressively increase in difficulty. Activities can be facilitated with individuals or groups of

any size. Examples of Montessori-based activities include stringing beads, categorising objects

and sorting playing cards (Sheppard et al., 2016; van der Ploeg et al., 2013). This approach is

thought to be particularly suitable for engaging people with dementia as it makes use of

procedural memory which is often less impaired than other cognitive abilities as dementia

progresses (Sheppard et al., 2016). The approach also utilises external cues with tasks

demonstrated by a facilitator rather than relying on language which can be difficult for people

with dementia (van der Ploeg et al., 2013). The focus on physical demonstration rather than

language also makes the approach effective for people who lack proficiency in the English

language (van der Ploeg et al., 2013).


A recent systematic review identified 14 relevant articles employing Montessori-based

activities for people with dementia (Sheppard et al., 2016). Findings suggest that the approach

has benefits for eating behaviours such as increases in residents eating independently but this

did not lead to associated improvements in nutritional status. While improvements were

reported in constructive engagement and positive affect residents did not display any

enhancements in advanced cognitive skills because of involvement in Montessori-based

activities.

Green Care Farms

To implement person-centred principles to care, some RACFs have begun organising

care in small scale facilities with a homelike approach (de Boer et al., 2015). Using this

approach six to eight residents typically reside together in a recognisable environment aimed

at providing a life as similar as possible to the lives the residents lived before moving to the

facility (de Boer et al., 2015; de Boer, Hamers, Zwakhalen, Tan, Beerens, et al., 2017). This

environment and approach to care fosters resident autonomy, activity participation and social

interaction while aiming to give residents a sense of meaning in their lives and opportunities to

express themselves (de Boer et al., 2015; de Boer, Hamers, Zwakhalen, Tan, Beerens, et al.,

2017).

Green Care Farms are one model of care utilising small-scale facilities and a homelike

approach. Green Care Farms are small-scale homelike living facilities located on a farm (de

Boer et al., 2015). They predominantly provide day care but are more recently being used to

provide 24-hour residential care for people with dementia, particularly in the Netherlands (de

Boer et al., 2015; de Boer, Hamers, Zwakhalen, Tan, & Verbeek, 2017). Residents at Green

Care Farms are encouraged to spend time outside, involved in the care of the gardens and

animals and participate in daily activities such as domestic tasks, work-related activities, social

and leisure activities (de Boer et al., 2015). The activities that residents participate in are based

on and tailored to their individual capabilities (de Boer, Hamers, Zwakhalen, Tan, & Verbeek,

2017). Activities are incorporated into the residents’ normal daily lives in contrast to the often

institutional and organised nature of activities in more traditional RACFs (de Boer, Hamers,

Zwakhalen, Tan, & Verbeek, 2017). In addition to providing care for the residents, some Green

Care Farms are also working farms with agricultural production (de Boer, Hamers, Zwakhalen,

Tan, Beerens, et al., 2017).


Research evaluating the care provided by Green Care Farms as small-scale RACFs is

scarce. Findings have been published from one study utilising a longitudinal observational

design to explore the differences in the quality of care, QoL and participation in activities for

residents of Green Care Farms, other small-scale RACFs and traditional RACFs in the

Netherlands (de Boer et al., 2015; de Boer, Hamers, Zwakhalen, Tan, Beerens, et al., 2017; de

Boer, Hamers, Zwakhalen, Tan, & Verbeek, 2017). During the observations, Green Care Farm

residents spent approximately half of their time participating in social or leisure activities or

eating and drinking (de Boer, Hamers, Zwakhalen, Tan, Beerens, et al., 2017). They spent an

additional 20% of their time involved in domestic tasks, outdoor activities or care-related

activities. Residents mostly showed signs of engagement when involved in activities. Green

Care Farm residents participated in these activities significantly more often and had

significantly more active engagement in activities than residents of traditional RACFs. When

compared to residents of other small-scale RACFs, residents of Green Care Farms were

significantly more involved in physical activity but no other differences were found in activity

participation or engagement of the groups (de Boer, Hamers, Zwakhalen, Tan, Beerens, et al.,

2017). There were no significant differences in self report QoL, using the Quality of Life-

Alzheimer’s Disease (QoL-AD) scale, for Green Care Farm residents compared to residents of

other types of RACFs. Proxy reports of QoL, using the QoL-AD, suggested that resident QoL

was higher in Green Care Farms compared to traditional RACFs (de Boer, Hamers, Zwakhalen,

Tan, & Verbeek, 2017). This study did not find any differences in QoL between residents of

Green Care Farms and those in other small-scale RACFs. The authors suggested that this may

be due to similar underlying approaches to care in all small-scale RACFs, including Green Care

Farms, which focus on creating and fostering homelike daily lives for residents (de Boer,

Hamers, Zwakhalen, Tan, & Verbeek, 2017). The findings of this study have important

implications for dementia care and future research, suggesting that consideration should be

given to appropriate methods of including activities matched to the preferences and needs of

individual residents into their everyday lives (de Boer, Hamers, Zwakhalen, Tan, & Verbeek,

2017).

Butterfly Care Home Model

The final model of care based on the principles of person-centred care to be discussed

here is the Butterfly Care Home Model. There are a lack of studies evaluating the

implementation and outcomes of the model, but a number of commentary articles have been


published. The Butterfly Care Home Model was first developed by Dr David Sheard in the

UK in 1995. The model is based on the fundamental belief that people with dementia will thrive

if a nurturing environment is created where person-centredness is at the core of relationships

between people who live and work at the RACF (DeSantis, 2015; Sheard, 2013, 2015b). The

model focuses on improving the lived experience of people with dementia living in the home,

by prioritising social and emotional wellbeing and care (DeSantis, 2015; Sheard, 2013, 2015a).

The Butterfly Care Home Model is not a universal approach that can be applied the same

way in all settings (Sheard, 2015b). However, there are several key features that are evident in

all Butterfly Care Homes. Butterfly Care Homes are set up as small households where residents

are matched based on their severity of dementia (DeSantis, 2015; Sheard, 2015a). The physical

environment of the homes is intended to be engaging and homelike (DeSantis, 2015; Sheard,

2013). RACFs intending to become a Butterfly Care Home are supported to engage in a 12-

month program of culture change (Sheard, 2015b). A key element of this culture change

involves removing separation between staff and residents and instead modelling the

relationships on a family living and working together in a household (DeSantis, 2015; Sheard,

2015a, 2015b). For example, staff often eat meals with the residents and do not wear uniforms

(DeSantis, 2015; Sheard, 2015a). Under the Butterfly Care Home Model, routines are relaxed

and staff are encouraged to focus on being with and connecting with residents rather than

primarily undertaking tasks for residents (DeSantis, 2015; Sheard, 2013, 2015a).

Homes that have implemented the model have suggested observed improvements in

various areas. In one Butterfly Care Home, six months after implementation, many residents

had gained weight and reductions in the frequency of behaviours and number of falls were

observed (Sheard, 2015b). Reductions were also seen in analgesic and neuroleptic drug use and

in staff sickness. It has also been suggested that the model of care promotes an improved mood

in the homes and has a beneficial effect on resident sleep quantity and quality (Sheard, 2013).

More research is needed to evaluate the impact of the Butterfly Care Home Model on quality

of care and QoL for people with dementia living in these homes.

Relationship-centred care

In the 1990s there was growing dissatisfaction with the health care system in the US as

it failed to adequately care for a growing number of people with chronic illnesses (Nolan et al.,

2004). The Pew-Fetzer Task Force on Advancing Psychosocial Health Education was set-up


to consider different approaches to care and proposed ‘relationship-centred care’ as a new

model (Beach, Inui, & Relationship-Centered Care Research Network, 2006; Nolan et al.,

2004). This foundation for care acknowledges the importance of autonomy and the personhood

of individuals but within the context of partnerships and interdependence on others (Beach et

al., 2006; Nolan et al., 2004). Nolan argues that relationships are so integral to caring that care

cannot be understood outside of the context of relationships (Nolan, Keady, & Aveyard, 2001).

Under this model of care, clinicians are encouraged to empathise with their patients and

facilitate a genuine and honest relationship rather than simply acting in their role (Beach et al.,

2006). This type of genuine relationship fosters reciprocal influence where the patient’s health

benefits from the encounter and the patient also has an impact on the clinician (Beach et al.,

2006).

The Senses Framework applied principles of relationship-centred care initially to long

term care settings and has since been broadened to understand quality care for older adults in

acute hospital settings (Nolan et al., 2004). The Framework is based on therapeutic

relationships that promote a sense of security, belonging, continuity, purpose, achievement and

significance (Nolan et al., 2004). Good quality care should ensure these six senses are the

subjective experience of care for everyone involved including the older person, family carers,

paid or voluntary carers (McCormack, 2004; Nolan et al., 2004). In his influential book on the

topic Kitwood defines person-centredness as “a standing or status that is bestowed upon one

human being, by others, in the context of relationship and social being. It implies recognition,

respect and trust” (Kitwood, 1997, p8). According to this definition place, context and a sense

of self are important aspects of person-centred care as well as relationships. Therefore, the

philosophy of person-centred care encompasses relationship-centred care (McCormack, 2004).

While there is general commitment to the philosophy of person-centred care as the

dominant approach in health facilities there also appear to be tensions between the philosophy

and implementing it fully in practice (Hebblethwaite, 2013). Research suggests that Australian

RACFs only moderately adhere to person-centred principles (O'Reilly et al., 2016). Structural

barriers such as strict routines, a focus on impairments and dependency and the tradition of

limited interdisciplinary teamwork and family involvement in care and care decision-making

have meant that despite positive intentions and recognition of the value of person-centred care

its implementation and sustainability is difficult.


2.2 QUALITY OF LIFE

With recent shifts in dominant philosophies of care, QoL has become a greater focus of

care. This section describes how QoL is conceptualised, the various approaches to measuring

QoL and what is currently known in the literature about factors associated with QoL in RACFs.

2.2.1 Conceptualisation of quality of life

QoL is a multidimensional concept, making it difficult to define (Beattie et al., 2015;

Cooney, Murphy, & O'Shea, 2009; Sloane et al., 2005; Venturato, 2010). This has resulted in

a diverse range of definitions of the concept (Lawton, 1994b). Research in the area of QoL

grew rapidly in the 1990s and towards the end of that decade there were reportedly at least one

hundred definitions of QoL in use (Cummins, 1997). A narrative literature review of 47 studies

published between 1994 and 2006 concerned with the conceptualisation of QoL for older adults

found that two-thirds of studies included provided a specific definition of the concept

(Halvorsrud & Kalfoss, 2007). However, these definitions differed and many defined QoL in

very broad terms, without clear distinction from similar concepts such as health-related QoL

(Halvorsrud & Kalfoss, 2007).

Despite the varying definitions of QoL used in the literature, there is general agreement

about several key elements. QoL includes a diverse range of domains such as physical and

psychological health, physical and social environments and an individual’s perception of their

life (Halvorsrud & Kalfoss, 2007; Lawton, 1994b; Logsdon et al., 2002). Conceptually, QoL

contains both subjective and objective elements (Beattie et al., 2015; Cooney et al., 2009;

Lawton, 1994b; Logsdon et al., 2002; Sloane et al., 2005). Subjective elements include internal

factors such as an individual’s perception of their life and their sense of wellbeing and

contentment while objective elements range from social activity and other behavioural aspects

to environment, surroundings and functional abilities.

A recent concept analysis on QoL in older adults recognised these varying aspects of

QoL and classified them into three main meanings: satisfying life conditions, subjective

wellbeing and fulfilment of dimensions of human life (Boggatz, 2015). Firstly, satisfying life

conditions consist of the objective elements such as financial situation, housing and health and

functional status which are independent of any subjective evaluation. The second perspective

on QoL in older adults questions the appropriateness of objective elements as when used alone

it is difficult to determine levels which are satisfying or not (Boggatz, 2015). Rather, an


approach considering subjective general wellbeing, comparing these life conditions to personal

expectations may be more suitable. A third approach to understanding QoL in older adults

found through the process of concept analysis is the subjective fulfilment of the dimensions of

human life (Boggatz, 2015). These dimensions are captured separately and not combined to

provide a total measure of QoL. There is no consensus on which dimensions are most relevant

for older adults but can include life satisfaction, positive and negative affect, control, purpose

in life and social relationships. Key domains of QoL specifically in the RACF context include

resident perceptions of their social life, their level of personal control, the quality of food served

at the RACF and the nature of staff care and responsiveness to resident needs (Morris et al.,

2018). This third approach is thought to be the most suitable for understanding QoL as an

outcome of care as considering dimensions separately is more informative and sensitive to

changes in conditions and care practices than using a summary measure of overall wellbeing

or QoL (Boggatz, 2015).

These key aspects of QoL are described in the comprehensive World Health Organisation

definition of the concept:

An individual’s perception of their position in life in the context of the culture and value

systems in which they live and in relation to their goals, expectations, standards and

concerns. It is a broad ranging concept affected in a complex way by the person’s

physical health, psychological state, personal beliefs, social relationships and their

relationship to salient features of their environment (World Health Organisation, 2004,

p1)

Regardless of the specific definition used, QoL is recognised as a significant focus and

outcome of care for older adults (Boggatz, 2015). This is especially important for people living

with dementia as there is no effective treatment or cure for the condition (Beattie et al., 2015).

2.2.2 Measurement

There are many approaches to measuring QoL with a range of measurement tools and no

gold standard (Zimmerman et al., 2005). Most approaches can be classified as either

objectively or subjectively measuring QoL. Objective evaluations of QoL usually involve

proxy assessments of observable characteristics or behaviours (Kurisu et al., 2016; Lawton,

Winter, Kleban, & Ruckdeschel, 1999). This approach to QoL assessments was first used in

the policy and planning sectors where the availability of services in a community were equated


to the wellbeing of those living in that community (Lawton et al., 1999). In the social sciences,

characteristics such as income, occupation and health are often used as indicators of QoL

(Lawton et al., 1999). For people with dementia, the ability of perform activities of daily living

(ADLs) is sometimes used in this way as it is thought that competence in these behaviours is a

reasonable goal for people of all levels of cognitive ability (Lawton, 1994b). Other elements of

QoL that have been measured in this way for people with dementia include observed affect and

pleasant events (Logsdon et al., 2002). Until relatively recently, these observation-based

evaluations were the focus of QoL assessments of people with dementia (Katsuno, 2005).

However, using this approach alone to measure QoL is problematic as it is difficult to ascertain

whether these elements are important for an individual’s QoL (Logsdon et al., 2002).

With mixed findings in the literature on the relationship between these and other

indicators and QoL, some argue that objective measures of QoL are insufficient and subjective

measures are more appropriate (Lawton et al., 1999). It has been argued that comprehensive

assessments of QoL need to include both objective and subjective elements (Kurisu et al.,

2016). Subjective measurement of QoL involves a person making a judgement about their own

life (Kurisu et al., 2016; Lawton et al., 1999). As the condition progresses, people with

dementia often lose insight, self-awareness, orientation, communication skills and the ability

to maintain attention, making subjective assessments of QoL more difficult (Kurisu et al., 2016;

Lawton, 1994b; Logsdon et al., 2002; Ready & Ott, 2003). However, while there is some debate

in the literature, self report of QoL is usually considered reliable for people with mild and even

moderate stages of dementia (Katsuno, 2005; Kurisu et al., 2016; Lawton, 1994b; Moyle et al.,

2015; Ready & Ott, 2003). A commonly used indicator of ability to reliably self report QoL is

a Mini-Mental State Exam (MMSE) score of 10 or more out of 30 (Beattie et al., 2015). In

addition to this, to facilitate the participation of people with dementia in research about their

QoL, there is an increasing focus on developing QoL assessment tools that are dementia

specific (Logsdon et al., 2002; Ready & Ott, 2003; Venturato, 2010). These tools may, for

example, provide explicit step-by-step instructions, fewer options for simplification, visual

cues and be interviewer-administered face-to-face (Katsuno, 2005; Logsdon et al., 2002).

Impairments in verbal communication, memory and decision making capabilities make

involvement of people with more severe dementia in research difficult (Hubbard, Downs, &

Tester, 2003). However, it has been argued that if studies of QoL only include participants

who have the capacity to provide self reports, an inaccurate understanding of the level of QoL

will be drawn (von Essen, 2009). As people who are too ill, frail or cognitively impaired to


provide self reports are thought to have lower QoL, excluding them from studies may result in

an overestimation of the overall level of QoL (von Essen, 2009). Therefore, while it is desirable

to include subjective self report measures of QoL for people with dementia it is inevitable that

proxy reports of externally observed behaviours and objective measures will become more

important when examining the QoL of people with more severe dementia (Beer et al., 2010;

Lawton, 1994b; Ready & Ott, 2003). The direct observation of emotions in a person with

dementia by a family or staff carer proxy has been framed as a ‘window’ into their subjective

wellbeing (Lawton, 1994b). Even when self report of subjective assessments of QoL are

possible they are often collected in conjunction with proxy reports from family members and

care staff (Beattie et al., 2015; Hubbard, Downs, et al., 2003; Moyle, 2010).

A proxy assessment of another person’s QoL is based on the assumption that the proxy

knows their underlying values and priorities and is able to assess their life situation in relation

to them (von Essen, 2009). The research literature consistently suggests that people with

dementia rate their own QoL higher than the ratings provided by their proxy family and staff

carers (Beattie et al., 2015; Beer et al., 2010; Hoe, Hancock, Livingston, & Orrell, 2006;

Logsdon et al., 2002; Moyle et al., 2015). This has been found to be consistent for people with

varying levels of cognitive impairment (Logsdon et al., 2002). An Australian study compared

the QoL ratings of 351 people with dementia living in RACFs as reported by the residents,

family informants and staff informants using the QoL-AD scale (Beer et al., 2010). Results

revealed that QoL ratings by family and staff informants were significantly correlated but were

consistently and substantially lower than the self reported ratings. The AusQoL study also

collected data about the QoL of RACF residents with dementia as reported by residents, their

family members and RACF staff using the QoL-AD (Beattie et al., 2015). Again, residents

rated their QoL higher than the proxy ratings (Beattie, Fielding, Moyle, He, & AusQoL Group,

2016). However, in the AusQoL study, there were differences between family and staff ratings

with RACF staff rating resident QoL higher than family members.

Several reasons have been identified for the differences between self report and proxy

report of QoL. These include perceptions of the level of competence and dependency of the

person, understanding of dementia and beliefs about appropriate dementia care, inadequate

communication between the person and their proxy, the frequency and depth of contact

between the person and their proxy, inconsistent RACF staff assignment, staff stress and job

satisfaction (Beer et al., 2010; Hoe et al., 2006; Logsdon et al., 2002; von Essen, 2009). The

QoL measure being used and the domains of QoL which it covers can also contribute to the


level of agreement or disagreement between self report and proxy report of QoL (von Essen,

2009). As would be expected, subjective elements of QoL such as pain and anxiety are more

difficult for a proxy to assess whereas elements that are more objective including mobility and

participation in activities can be measured more accurately by either family or staff caregivers.

There are several measures that assess QoL in dementia. A literature review published in

2003 provided a critique of nine of these QoL measures used specifically with people with

dementia (Ready & Ott, 2003). The measures reviewed vary in relation to QoL definition used,

domains covered and assessment procedures. Some are broad, including objective as well as

subjective elements, while others focus on a limited number of domains such as affect,

enjoyment, activity or social interaction.

2.2.3 Factors associated with quality of life in RACFs

There are many studies which have measured perceived QoL of people living with

dementia in RACFs (Venturato, 2010). For RACF residents, QoL is associated with

demographic characteristics such as level of education and age (Drageset et al., 2009).

Residents with no comorbid illnesses, lower levels of depression and anxiety, who report a

hobby or live in a facility that more actively encourages activity participation report a higher

QoL (Drageset et al., 2009; Hoe et al., 2006; Zimmerman et al., 2005). Residents who have

been restrained, fallen or experienced pain self report lower QoL (Beer et al., 2010). Lower

proxy ratings of QoL have been found to be associated with more severe cognitive impairment,

higher levels of physical disability and the presence of dementia related behaviour changes as

well as use of restraint, hospital presentations, general practitioner reviews, case conferencing

and carer stress (Beer et al., 2010; Hoe et al., 2006; Logsdon et al., 2002). These findings across

studies suggest that informants’, particularly staff caregivers, perception of the residents and

their QoL are influenced by their functional ability, impairments and dependency rather than

more subjective aspects such as mood and experiences which were more closely associated

with resident self report of QoL (Hoe et al., 2006).

A recent study involving interviews with older people living in RACFs identified four

main factors which they perceive as impacting on QoL: ethos of care, sense of self and identity,

connectedness and activities (Cooney et al., 2009; Murphy et al., 2007). The degree to which

residents feel at home in the RACF has also been found to be associated with residents’

perceptions of their QoL (Morris et al., 2018). Residents who reported that they never or rarely


felt at home also reported lower QoL across the domains of social life, personal control, quality

of food as well as the care and responsiveness of staff. Studies focusing on residents with

dementia have found similar themes (Moyle et al., 2015; Moyle et al., 2011). A recent case

study involving a subsample of 12 people living with dementia in four Australian RACFs who

participated in the parent AusQoL study (Beattie et al., 2015) focused on exploring what issues

are important for QoL from the perspective of this population (Moyle et al., 2015). Themes

such as independence, a sense of contributing and feeling valued, being occupied and social

interactions with family, friends, other residents and RACF staff were found to be of

importance (Moyle et al., 2015; Moyle et al., 2011). Some residents reported that living in a

RACF enabled a certain degree of independence which improved their QoL while others felt

the structured living situation restricted their independence and negatively impacted their QoL.

Most participants discussed the importance of having something to occupy their time to

experience a good QoL with idleness leading to frustration and poor QoL. The types of

activities varied, ranging from solitary activities to physical activities and those organised by

RACF staff. Social interactions appeared to positively impact the QoL of participants through

a sense of altruism, enjoyment and connection. However, many participants emphasised that

these interactions must be of good quality if they are to contribute to QoL. The emphasis of

these participants on the impact of the social aspects of care on their QoL reinforces the

importance of a person-centred philosophy of care in RACFs (Moyle et al., 2015). In essence,

the needs and desires of residents with dementia in relation to their QoL are no different to

individuals living in the community or to those who do not have dementia (Moyle et al., 2011).

While the literature on QoL of residents living with dementia in RACFs is increasing,

significant gaps remain. There is no widely accepted benchmark of QoL in this cohort and most

previous study results lack generalisability due to the use of purposive and convenience

sampling of RACFs or a focus on a relatively small geographic area (Beattie et al., 2015;

Fielding, Beattie, O'Reilly, McMaster, & AusQoL Group, 2015). A recent literature search

found 41 studies published between 2004 and 2014 focusing on QoL of people living with

dementia in RACFs (Fielding et al., 2015). Of these studies, 85% used nonprobability sampling

designs. With a lack of large-scale, comprehensive studies examining QoL in this cohort

internationally, and particularly in Australia, knowledge of the factors that influence it is

limited (Beattie et al., 2015).


2.3 MEANINGFUL ACTIVITY

The focus of this study will be on exploring activity as an important aspect of QoL for

people living with dementia in RACFs. From among the range of domains of QoL, activity

was chosen as the focus of this study for several reasons. Activity participation is an

observational measure of QoL which is suitable for measuring QoL of people with dementia

who cannot communicate well or self report their own QoL (Albert et al., 2001; Lawton,

1994b). Observable measures of QoL are more likely to be reported accurately, without bias,

by proxy report compared with unobservable, subjective aspects of QoL, although they are

thought to be related (Albert et al., 1996). Previous research has shown that activity

participation as a measure of QoL is worth further exploration among people with dementia as

diversity in activity patterns and overall participation have been found within this group (Albert

et al., 1996). The importance and relevance of the various domains of QoL varies depending

on the living situation and context (Logsdon & Albert, 1999). Care environments such as

RACFs can restrict different aspects of daily life but participation in leisure and social type

activities remain relevant in this specific context. Overall, activity participation is a valuable

focus within the complexities of QoL for people with dementia living in RACFs because it is

perceived as relevant and important by those with dementia and their carers (Albert et al.,

2001). RACF residents themselves have reported that activities are part of what gives them a

good QoL (Moyle et al., 2015) and this needs to be considered in more detail. This section will

concentrate on the literature relevant to activity and, more specifically, ‘meaningful activity’.

The focus on activities that are tailored (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski

et al., 2011; Mohler, Renom, Renom, & Meyer, 2018), individualised (Van Haitsma et al.,

2015), preferred (Cohen-Mansfield, Gavendo, & Blackburn, 2017) or purposeful (Dementia

Australia, 2019b) reflects the value of activities that are suited to the individual beyond general

participation in activities. There is also interest in how people with dementia perceive, value or

find meaning in activities that they participate in (Aged Care Quality and Safety Commission,

2018; Hubbard, Downs, et al., 2003; Phinney et al., 2007). These approaches to activities for

people living with dementia are based on a person-centred philosophy and facilitating

participation in them is one way person-centred care can be implemented (Edvardsson,

Varrailhon, et al., 2014; Han et al., 2016b).

Traditionally, ‘meaningful activity’ has been the focus of occupational therapy (OT)

practice and literature. OT is based on participation in ‘meaningful activity’ as a goal and

fundamental outcome of OT interventions (Chung, 2004; Eakman, 2012; Roley et al., 2008)


and the belief that this contributes to wellbeing and life satisfaction (Chung, 2004; Goldberg,

Brintnell, & Goldberg, 2002). A basic principle of OT, termed occupational justice, is that all

individuals have the right to participate in activities (Du Toit, Shen, & McGrath, 2018). This

has important implications for people with dementia as it suggests that, despite impaired

cognitive and physical abilities, people with dementia retain an inherent need for participation

in activities (Chung, 2004). Literature focusing on OT in dementia care suggests that

participation in ‘meaningful activity’ may help people with dementia to maintain a sense of

personhood (Chung, 2004). These contributions of the OT field to dementia care align with the

principles of person-centred care which has become the dominant approach to caring for people

with dementia (Du Toit et al., 2018; Nolan et al., 2004). Both OT and person-centred care

advocate for seeing people with dementia as unique individuals with a past, present and future,

identity, interests, strengths, abilities and rights (Brooker, 2004; Du Toit et al., 2018;

McCormack, 2003). In this context, ‘meaningful activity’ is a key concept to consider with

implications for the care and QoL of people living with dementia.

2.3.1 Definition

While there is no consensus on what constitutes a ‘meaningful activity’ it is a term

frequently used in the literature (Mansbach et al., 2017). Below are some examples of

definitions used. Some are broad such as “engagement in life” (Kuosa, Elstad, & Normann,

2015; p2) while others focus on specific aspects such activities that “fulfil a goal or purpose”

(Goldberg et al., 2002; p18).

“The concept of meaningful activity is used more broadly to describe engagement in

life. Meaningful activities encompass everything that makes life meaningful and worth

living, including everyday activities and individual lifestyle” (Kuosa et al., 2015; p2)

“The spectrum of occupations a person performs in his or her everyday life that are

perceived as significant to that person” (Phinney et al., 2007; p385)

“In the context of dementia, an activity is considered meaningful when it enables a

person to remain involved in everyday activities and personal relationships” (Roland

& Chappell, 2015; p1)

“Self-chosen activities derived from an individual’s interests, preferences, values,

motivations, pleasure or sense of the importance of participating in certain activities”

(Han et al., 2016a; p115)


The literature provides a range of varied examples of activities that are potentially

meaningful. Some of these examples include reminiscence, family and social interactions,

musical activities and other hobbies, household chores, work-related activities and individual

activities such as reading or knitting (Harmer & Orrell, 2008; Phinney et al., 2007). However,

the utility of compiling a list of ‘meaningful activities’ is limited as the meaning ascribed to

specific activities and reasons for participating in each activity will vary between individuals

and even over time (Eakman, 2013; Han et al., 2016a; Mansbach et al., 2017). For example,

people with dementia have reported valuing participation in physical activity for a variety of

reasons including as a way of interacting with others and seeking peer support, enjoying nature

and time outside and maintaining a sense of self by shifting focus away from their dementia

diagnosis and symptoms (Junge, Ahler, Knudsen, & Kristensen, 2018). It is, therefore, more

useful to identify what makes an activity meaningful. Some common elements suggested in the

literature that may make activities meaningful include being individualised, enjoyable and

stimulating (Brooker & Woolley, 2007; Harmer & Orrell, 2008; Phinney et al., 2007; Roland

& Chappell, 2015). According to Leontiev’s activity theory, the meaningfulness of an activity

is closely connected to social relationships as it is those relations that often provide purpose

and motivation for undertaking activities and identity is shaped and reinforced within the

context of these relationships (Kuosa et al., 2015). For example, preparing a meal may be

meaningful when it is for family or guests (Kuosa et al., 2015). Further research is required to

understand the fundamental attributes of what makes an activity meaningful. Current research

focuses on what specific activities are likely to be meaningful for people with dementia or the

effect of art, music and recreational activities rather than identifying the defining features of

‘meaningful activities’ and how they may be identified on an individual basis.

2.3.2 Measurement

Similarly, there is no consensus on an approach to measuring ‘meaningful activity’

(Mansbach et al., 2017). The lack of clarity in the literature around defining and

conceptualising ‘meaningful activity’ has resulted in studies focusing on many different aspects

of activity and activity involvement, limiting the comparability of results from these studies.

It is common for studies investigating activity quantitatively to focus on the frequency of

observable activity (Albert et al., 1996; Lawton, 1994a). While an understanding of the external

behavioural component of activity is valuable, this approach is limited in its ability to assess


the meaning of activity and fails to provide a comprehensive picture of the concept (Lawton,

1994a). In addition to this, proxy reports of the frequency of activity participation do not

indicate the level of engagement in the activity (Albert et al., 1996). The Activity and Affect

Indicators of Quality of Life (AAIQOL) tool attempts to address this by inquiring about

enjoyment of the activity. The other limitation of this approach to investigating activity is that

research usually focuses on external activities that are observable and behavioural (Lawton,

1994a). This rarely includes solitary activities that could be meaningful to individuals such as

individual reminiscing and creative thought.

As with QoL, ‘meaningful activity’ can be measured using self report or proxy report.

Again, differences have been reported between the self and proxy ratings with long-term care

facility staff members providing significantly higher ratings of ‘meaningful activity’ than the

participants (Mansbach et al., 2017). This finding was consistent for residents with mild to

moderate cognitive impairment.

Two tools have been developed to specifically measure ‘meaningful activity’

quantitatively (Eakman, Carlson, & Clark, 2010a; Eakman et al., 2010b; Goldberg et al., 2002).

The Engagement in Meaningful Activities Survey is a 12-item tool which was originally

developed to measure the extent of engagement in ‘meaningful activity’ of people with mental

illness living in the community (Goldberg et al., 2002). The Meaningful Activity Participation

Assessment is a 28-item tool which measures the frequency of activity participation and the

personal meaningfulness of each activity using both subjective and objective indicators

(Eakman et al., 2010b). Both measures have been validated for use with older adults but not

specifically for those with dementia, with an inclusion criteria for both validation studies being

that participants must have the cognitive ability to participate (Eakman et al., 2010a, 2010b).

In addition to this, both measures are for use in self report of the meaningfulness of activities

and do not include proxy report versions which may be valuable if including people with

dementia.

Several studies explore ‘meaningful activity’ for people with dementia using a qualitative

approach. While these studies often include an element of compiling a list of ‘meaningful

activities’ they typically build on that foundation to explore what factors contribute to the

activities having meaning (Harmer & Orrell, 2008; Palacios-Cena et al., 2016; Phinney et al.,

2007; Roland & Chappell, 2015). Data is usually collected using individual interviews with

people with dementia but has also been investigated using focus groups and from the

perspectives of family or RACF staff carers.


2.3.3 Potential effects of ‘meaningful activity’

Older adults who are engaged in physical activities, hobbies, leisure activities or

‘meaningful activities’ are reported to experience increased wellbeing, both psychological and

physical, when compared to those who are not (Drageset et al., 2009; Junge et al., 2018;

Phinney, 2006; Phinney et al., 2007; Roland & Chappell, 2015; Thomas, O'Connell, & Gaskin,

2013). This positive outcome of activity participation has been reported for people with or

without dementia, living in RACFs or the community. A recently published systematic review

of studies using psychological theories of ageing to explore the relationship between wellbeing

and engagement in ‘meaningful activities’ focused on five examples of ‘meaningful activities’:

life story work, spiritual activities, intergenerational activities and participation in previously

enjoyed or new leisure activities (Nyman & Szymczynska, 2016). Nyman and Szymczynska

(2016) reported that participation in ‘meaningful activities’ gives people with dementia a sense

of pleasure and addresses central psychological needs such as a sense of control and the ability

to achieve important life goals. Activity participation has also been shown to be positively

related to positive affect, contentment and a sense of dignity (Lawton, 1994a; Milte et al.,

2016). Furthermore, people living in RACFs show greater levels of frustration and

disengagement when not provided with opportunities to pursue ‘meaningful activities’

(Cooney et al., 2009). Family caregivers of people living with dementia value participation in

exercise related ‘meaningful activity’ for the benefits to the general health, fitness and

cognitive function of the person living with dementia (Roland & Chappell, 2015). From the

perspective of health professionals, ‘meaningful activity’ for people with dementia contributes

to person-centred care and improves health and wellbeing (Mansbach et al., 2017).

In relation to dementia related behaviour changes in people living with dementia, activity

and nursing staff report that participating in ‘meaningful activity’ may improve mood and

reduce agitation and the use of psychotropic medication (Mansbach et al., 2017). Participation

in activities, including ‘meaningful activities’, is recommended as the first line treatment of

minor depression and other dementia related behaviour changes in RACF residents with

dementia and in combination with pharmacological interventions for residents with more

severe dementia related behaviour changes (American Geriatrics Society & American

Association for Geriatric Psychiatry, 2003).

While not focusing on ‘meaningful activity’, there are studies that have assessed the

effect of tailored or individualised activities in people with dementia which have shown

decreased dementia related behaviour changes, increased pleasure and increased alertness


(Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al., 2015). The

Tailored Activity Program (TAP) is an activity-based intervention for people with dementia

using OT principles, matching and prescribing activities that match the abilities, interests and

past roles of individuals (Gitlin et al., 2017; Gitlin et al., 2008; Gitlin et al., 2009). A wide

range of activities may be prescribed by the OT through the TAP program including,

reminiscence activities, instrumental activities of daily living or household chores, games, arts

and craft, exercise and music activities (Gitlin et al., 2009). The intervention is delivered by

OTs and involves training caregivers who live with the person with dementia in facilitating

activities, simplifying activities to account for declining abilities and reducing stress. The

intervention has been shown to increase activity engagement, reduce dementia related

behaviour changes, including negative verbal and nonverbal behaviours, and improve QoL

among people with dementia and have positive outcomes for carers such as reducing the time

spent providing care and improved self-efficacy (Gitlin et al., 2017; Gitlin et al., 2008). The

intervention has been implemented in the community setting (Gitlin et al., 2008; Gitlin et al.,

2009) and with hospital patients with dementia and their caregivers (Gitlin et al., 2017).

Although it has the potential to facilitate the provision of tailored activities for RACF residents

with dementia and reduce dementia related behaviour changes among this group, TAP has not

been implemented or evaluated in the RACF context. These studies provide some insight into

the potential effect of activity participation on specific domains of QoL.

In a recent Australian study, 12 people living with dementia in RACFs, participants in

the parent study of this thesis (Beattie et al., 2015), were asked to share their perception of their

QoL and explore potentially related physical, social and psychological factors (Moyle et al.,

2015). A key theme that was drawn from these interviews was the importance of having

something to do. While this study began to explore the role of ‘meaningful activity’ for QoL

of people living with dementia in RACFs other research on this topic to date has focused on

the community setting (Phinney, 2006; Phinney et al., 2007; Roland & Chappell, 2015) or older

adults without cognitive impairment (Cooney et al., 2009; Thomas et al., 2013). Further

research is needed to explore the concept of ‘meaningful activity’ in greater depth in the RACF

context and from a wider range of perspectives, including people living with dementia, their

family members and RACF staff.

There is growing interest in the area of ‘meaningful activity’ and an awareness that more

research is needed. Most studies considering the effects of ‘meaningful activity’ participation

are cross-sectional. Therefore, a causal relationship between ‘meaningful activity’ and various


physical and emotional health and behavioural effects cannot be definitively concluded from

these study findings. It has been suggested that participation in personally ‘meaningful

activities’ has a greater effect on wellbeing than more frequent participation in less significant

activities (Eakman et al., 2010b). However, there remains no consistent evidence on the

frequency of participation in ‘meaningful activity’ required to experience these positive health

and wellbeing effects (Lawton, 1994a). Research on the potential effects of ‘meaningful

activity’ focus on individualistic outcomes such as health and wellbeing. More research is

needed to investigate the social aspects of ‘meaningful activity’ such as connection and

belonging (Phinney et al., 2007). These are important concepts to consider because of the role

they play in QoL and personhood (Phinney et al., 2007).

2.3.4 Activity in RACFs

Most RACFs provide activity opportunities for their residents (Mansbach et al., 2017).

The types of activity opportunities commonly provided include religious activities, exercise,

music, arts and craft, reminiscence or cognitive activities and community outings (Buettner &

Fitzsimmons, 2003; Cooney et al., 2009). However, it is widely acknowledged that RACF

residents typically spend a lot of time idle, not involved in activities, meaningful or otherwise

(Harmer & Orrell, 2008; Holthe, Thorsen, & Josephsson, 2007; Mansbach et al., 2017). It has

been suggested that the large amounts of time spent by this cohort either passive or asleep may

be the result of dementia, with increased requirements for sleep due to changes in the brain,

depression and side effects of medication (Holthe et al., 2007). Inactivity may also be due to

boredom or social influences on activity participation such as gradual disengagement and

withdrawal accompanying increasing age and adapting to the RACF environment where

resident dependency is widespread (Holthe et al., 2007).

Various studies have reported that the activity opportunities provided for residents in

RACFs are inadequate in terms of frequency and choice, an emphasis on passive participation

and uneven engagement across resident populations (Buettner & Fitzsimmons, 2003; Holthe et

al., 2007; Mansbach et al., 2017). Family members of people with dementia living in RACFs

often report a lack of suitable activity opportunities (Kuosa et al., 2015). However, the literature

does not explore, in any depth, whether activity patterns vary for residents with varying levels

of cognitive or functional impairments or health status or for residents living in different types

of RACFs.


Most RACFs have an assigned team of activity staff who are primarily responsible for

resident activities and in Australian RACFs these are typically referred to as lifestyle workers

or lifestyle coordinators (Reid & Chappell, 2003; Richards, D'Cruz, Harman, & Stagnitti, 2015;

State of Victoria Department of Health, 2010). Staff in these roles focus on resident wellbeing

and QoL by involving residents in activities and facilitating opportunities for families and other

staff to also support resident participation in activities and contribute positively to resident

wellbeing. Activity staff who are responsible for providing activities for residents in RACFs

are unregulated healthcare workers (Australian College of Nursing, 2019). This means there is

no consistent qualification requirement, scope of practice or code of conduct for those

providing activities in Australian RACFs.

There are a range of other staff roles potentially involved in planning and delivering

activities in RACFs. Lifestyle workers and coordinators work as part of interdisciplinary teams

in RACFs (State of Victoria Department of Health, 2010). Following the assessment of

residents, nursing or medical staff may delegate aspects of care to lifestyle workers who can

support residents to meet their goals. Care staff may also be involved in resident activities

through their role in observing and reporting resident health, mood and needs and responding

to resident behaviours (State of Victoria Department of Health, 2010). Although it is unclear

how often or systematically OTs are involved in activity provision in Australian RACFs, it is

clear they could play an important role. OTs can provide support in a range of activity areas

including ADLs, instrumental ADLs, work, leisure and social participation (Fraker, Kales,

Blazek, Kavanagh, & Gitlin, 2014). In the context of dementia care, OTs have an integral role

in the use of activities for the prevention and management of dementia related behaviour

changes and in supporting caregivers (Fraker et al., 2014). Volunteers also have an important

role in facilitating activity participation among RACF residents. This is a large group with

68,000 people volunteering in Australian aged care services in 2016 (Aged Care Financing

Authority, 2019). Volunteers often work with and support the RACF activity staff and a higher

ratio of volunteer hours per resident is associated with more residents spending at least one

hour each day involved in activities (Smit, de Lange, Willemse, & Pot, 2017).

2.3.5 Factors influencing ‘meaningful activity’ participation in RACFs

Potential reasons for a lack of involvement in ‘meaningful activities’ in RACFs include

a focus on physical care tasks, staff workloads and a lack of understanding of how to engage


residents and the benefits they may experience from participation in ‘meaningful activities’

(Brooker & Woolley, 2007; Harmer & Orrell, 2008; Smit, de Lange, Willemse, Twisk, & Pot,

2016; Smit, Willemse, de Lange, & Pot, 2014). RACF staff commonly report a lack of time to

focus on supporting resident participation in ‘meaningful activities’ (Brooker & Woolley,

2007; Harmer & Orrell, 2008). This has also been reported by family members who

acknowledge that the staff provide good care but lack the time to support residents to participate

in ‘meaningful activities’ (Kuosa et al., 2015). However, Smit et al (2014) found there was no

relationship between resident participation and staff-to-resident ratio so suggest staff

competence to provide opportunities and support for participation in ‘meaningful activities’ is

critical. Ethnographic observations in a Norwegian RACF have shown that staff abilities to

adapt activities to suit individual needs vary (Holthe et al., 2007). Staff care practices may also

be influenced by their views on what constitutes successful ageing and what care of older

people should include (Wadensten, 2006; Wadensten & Carlsson, 2003). Some may encourage

activity participation and interaction while others will place more emphasis on an individual’s

desire to disengage from their surroundings and relationships (Wadensten, 2006). This is an

important consideration as one ethnographic study found that residents with dementia did not

participate in activities unless they were initiated by staff members (Holthe et al., 2007).

Care staff may view ‘meaningful activities’ as those that are organised as part of the

RACF activity program (Harmer & Orrell, 2008). A survey of over 300 long-stay settings in

Ireland revealed that the opportunities for activities provided for residents varied (Murphy et

al., 2007). The most common activities provided were music, bingo, card games and physical

exercise which were provided by 81% of facilities. However, the study did not make any

attempt to assess whether these activities were aligned with resident interests or preferences or

whether they held any meaning for them. A smaller study analysing the activity calendars of

five US RACFs and leisure preferences of 110 residents living with dementia in these RACFs

found there was a disconnect between preferences and opportunities (Buettner & Fitzsimmons,

2003). For example, approximately half of the participating residents mentioned cooking as a

preferred leisure activity but only one RACF provided scheduled cooking or baking

opportunities for the residents to participate in. In general, there is limited research considering

whether the activities provided as part of organised programs are meaningful for people living

in RACFs, including those with dementia (Moyle et al., 2011).

Resident factors may also influence their involvement in ‘meaningful activities’. Family

members of people with dementia have reported that residents do not typically raise their


activity needs and preferences with RACF staff (Kuosa et al., 2015). Several reasons they

suggested for this include their level of cognitive impairment, communication deficits or

barriers and older adults often being reluctant to place demands or requests on others. One

study has explored this topic from the perspective of residents with dementia (Harmer & Orrell,

2008). The main barrier the residents identified was their motivation to participate in

‘meaningful activities’. They perceived a lack of motivation as a part of normal ageing and the

sense of isolation many of the residents felt from the familiarity of their daily routines, family

and community since moving into residential care. This was a small study involving focus

groups with 17 residents in one outer London borough.

There is also some evidence that level of physical function and dementia related

behaviour changes are associated with activity participation among RACF residents with

dementia. Residents with higher levels of overall ADL dependency have been found to

participate in staff-led activities less frequently (Kuhn, Fulton, & Edelman, 2004) while those

who are self-ambulatory participate in the most activities (Buettner & Fitzsimmons, 2003). In

relation to dementia related behaviour changes, more severe depression, aggressive behaviour

and verbally disruptive behaviour are associated with less frequent activity participation

(Backhouse et al., 2016; Dobbs et al., 2005; McMinn & Draper, 2005). With most studies being

cross-sectional, the nature of the associations between dementia related behaviour changes and

activity is unclear. It is possible that inactivity is the effect of dementia related behaviour

changes with residents self-withdrawing from activities or being excluded or avoided by others

due to difficulties managing the behaviour (Achterberg et al., 2003; Backhouse et al., 2016). It

may also be that dementia related behaviour changes are in response to inactivity and boredom

(Buettner & Fitzsimmons, 2003; Kang, 2012). Most studies exploring associations between

resident characteristics and activity focus on one or a limited number of characteristics. Studies

including a broader range of characteristics are needed to understand the independent

associations. Resident level characteristics associated with participation in ‘meaningful

activity’ also need to be further explored.

A more comprehensive understanding of the factors that inhibit and enable access to, and

participation in, ‘meaningful activities’ is needed to facilitate the participation of people living

with dementia in RACFs. The role of RACF staff in supporting residents with dementia to

participate in ‘meaningful activity’ means that their perspective on these issues is important.

Existing research exploring the factors influencing resident participation in ‘meaningful


activity’ in RACFs focuses on the European and UK context. The topic is yet to be considered

in depth in Australian RACFs.

2.4 CONCEPTUAL FRAMEWORKS RELEVANT TO ‘MEANINGFUL ACTIVITY’

Reviewing the literature related to activity and ‘meaningful activity’ among people living

with dementia revealed several conceptual frameworks broadly relevant to the topic of this

study. Relevant conceptual frameworks have been developed in relation to subjective

wellbeing in dementia (Kaufmann & Engel, 2016), engagement (Cohen-Mansfield, Dakheel-

Ali, & Marx, 2009; Lu et al., 2016) and group engagement (Cohen-Mansfield, Hai, &

Comishen, 2017). Activity was included in a conceptual framework of wellbeing in people

with dementia living in a long-term care special care unit (Kaufmann & Engel, 2016). With

this framework, based on Kitwood’s model of needs, activity was understood as a domain and

component of wellbeing, allowing people to be involved in life in personally significant ways

while bringing comfort and facilitating inclusion. However, this broad framework focused on

subjective wellbeing in dementia and comprised 30 components within the six domains of

comfort, attachment, inclusion, occupation, identity and agency. Activity was included in the

framework as a secondary focus of occupation and as a potential source of comfort and

inclusion for people with dementia. There was no focus on the meaning of activities, making

the framework inadequate for use in this study.

There are a few existing explanatory models of engagement of people with mild cognitive

impairment and dementia. The Daily Engagement of Meaningful Activities Intervention

(DEMA) is a nurse-led intervention involving information support and training around

activities for patients with mild cognitive impairment and their caregivers (Lu et al., 2016). The

DEMA model proposes that participation in the intervention results in reduced depressive

symptoms and improved satisfaction and life changes in patients and caregivers mediated by a

sense of confidence, participation in ‘meaningful activity’ and congruence in awareness of

functional ability between patients and their caregivers. While the conceptual framework

centres on an intervention designed to address the need to engage in ‘meaningful activity’ it

does not apply to the context of the current study. The framework focus is specifically people

with mild cognitive impairment living in the community in a dyadic relationship with a spouse

or friend caregiver. The focus of the current study is ‘meaningful activity’ for people with


varying degrees of dementia severity living in the RACF setting. There are critical differences

related to stage of dementia and living environment that make this model unsuitable for use in

this study.

A second explanatory model, taking a psychological perspective, the Comprehensive

Process Model of Engagement of Persons with Dementia, is concerned with the contributing

role of attributes of the environment, person and stimulus in engagement of people with

dementia living in RACFs in the expression of behavioural changes (Cohen-Mansfield,

Dakheel-Ali, et al., 2009). In this model, engagement means being occupied with an external

stimulus. The original model for individual engagement was later expanded to the

Comprehensive Process Model of Group Engagement to include engagement as a group

(Cohen-Mansfield, Hai, et al., 2017). The main limitation of this model for the current study is

that the psychological perspective used is not consistent with the philosophy of person-centred

care, focusing on the observation and assessment of discrete times of engagement. The focus

is on the various dimensions of engagement such as time spent occupied, level of attention and

attitude towards the stimulus rather than overall activity participation of the resident or features

of the activities.

No specific conceptual framework was chosen to inform this study as there are no

existing frameworks relevant to the RACF context and research questions of this study. The

widespread and largely unexamined use of the term ‘meaningful activity’ in the literature,

including the development of tools designed to measure it and in the absence of definitional

clarity, indicated that it was necessary to undertake a concept analysis of ‘meaningful activity’

as it relates to people with dementia, particularly those living in RACFs. The concept analysis,

reported in Chapter 4, proposes a preliminary model for considering ‘meaningful activity’ for

RACF residents with dementia and has been used as a framework to inform the remainder of

the study.

This chapter, presenting the current literature relevant to person-centred care, QoL and

‘meaningful activity’, provides a context to underpin this study. Critical review of the literature

has identified several gaps in understanding these concepts and the lack of an existing

conceptual framework relevant in the specific context of the lives of RACF residents living

with dementia. The next chapter outlines the methodology that was used to collect and analyse

data to answer the research questions and address some of these gaps in the research literature

to date.

Chapter 3: Research Design 38

Chapter 3: Research Design

The previous Chapters 1 and 2 established the context of this study. Dementia is a key

health concern, globally and in the Australian community. Without a cure for dementia, care

for people with the condition focuses on person-centred approaches with the goal of optimising

QoL. This philosophy and goal of care is particularly important in the RACF context, where,

in Australia, more than half of the residents have a dementia diagnosis. As found in previous

studies, residents themselves have suggested that being occupied contributes to their sense of

good QoL. In the context of growing interest in the relationship between person-centred care

and QoL, the participation of RACF residents with dementia in activity, and specifically

‘meaningful activity’, needed to be considered in more detail. The concept of ‘meaningful

activity’ had not been clearly defined or consistently understood, despite generally being

valued and promoted as contributing positively to wellbeing. Its potential influence on QoL in

relation to RACF residents with dementia also needed to be investigated. In addition to this, a

more comprehensive understanding of factors that influence resident participation in activities

was also needed.

This chapter describes the design of the study. Section 1 of the chapter provides an

overview of the research plan, linking the multiple phases of the study and demonstrating how

the research questions were addressed. Section 2 of this chapter describes the design of Phase

1 of the study. Phase 1 involved a literature-based analysis of the ‘meaningful activity’ concept.

The method of this analysis, informed by Walker and Avant’s approach to concept analysis

(Walker & Avant, 2011), is described. Phase 2, described in the next section of the chapter,

used data collected as part of a national study of QoL for people with dementia living in RACFs

(Beattie et al., 2015). Some background about that study, the data collection measures used as

well as the focus of the secondary analysis for this PhD research will be explained. The last

section of this chapter describes Phase 3 of the study which was a qualitative study further

exploring ‘meaningful activity’ for people living with dementia in RACFs. In relation to Phase

3, details will be given about the participants and their recruitment, the data collection methods

including interviews and focus group interviews and the qualitative content analysis process

used.


3.1 OVERVIEW OF THE RESEARCH PLAN

In response to the gaps in the literature, this research was undertaken in three phases:

Phase 1 was a theoretical literature-based analysis of the concept ‘meaningful

activity’ in people living with dementia using Walker and Avant’s method (Walker

& Avant, 2011)

Phase 2 involved secondary analysis of quantitative data sourced from the Quality

of Life and Care for People with Dementia in Residential Care Facilities (AusQoL)

study (Beattie et al., 2015). The focus of this analysis was to assess the level of QoL

of people living with dementia in RACFs, conceptualised as activity opportunities

and participation as well as apparent emotions. Another objective of Phase 2 was to

explore associations between a range of RACF characteristics as well as resident

demographic, health, care and dementia related behaviour change characteristics and

resident activity and affect.

Phase 3 explored resident, family and RACF staff perceptions of antecedents,

defining attributes and consequences of the concept of ‘meaningful activity’ for

people living with dementia in RACFs.

The links between these phases are illustrated in Figure 3.1 below. Table 3.1 presents the

core aspects of the research plan. The first two columns outline the research questions

generated from the gaps in the existing literature. The phases used to answer each research

question are listed in the last column below.


Figure 3.1. Study overview

Phase 1- Theoretical literature-based concept analysis

Identify the fundamental attributes, antecedents, consequences and empirical referents of ‘meaningful activity’ as they relate to older adults with dementia Propose a model of ‘meaningful

activity’ for older adults living with dementia

Phase 3- Qualitative study Explore perceptions of

‘meaningful activity’ as reported by RACF residents with dementia, family members and RACF staff Compare findings with model

of ‘meaningful activity’ developed in Phase 1

Phase 2- Secondary quantitative analysis of Australian QoL study

data Explore resident QoL as

represented by participation in activity and apparent emotions

Explore individual resident and RACF-level characteristics potentially associated with activity opportunities, the frequency of activity participation and resident affect

Cha

pter

3: R

esea

rch

Des

ign

41

Tabl

e 3.

1. O

verv

iew

of t

he re

sear

ch p

lan

Res

earc

h G

aps

Res

earc

h Q

uest

ions

St

udy

Phas

es

The

term

‘mea

ning

ful a

ctiv

ity’ i

s fr

eque

ntly

us

ed in

the

liter

atur

e bu

t the

con

cept

is n

ot

wel

l def

ined

or c

onsi

sten

tly u

nder

stoo

d.

1. W

hat

are

the

fund

amen

tal

attri

bute

s of

a ‘

mea

ning

ful

activ

ity’

for

peop

le

with

dem

entia

?

Phas

e 1-

Lite

ratu

re-b

ased

con

cept

ana

lysi

s Ph

ase

3 - Q

ualit

ativ

e st

udy

The

lack

of

larg

e sc

ale,

com

preh

ensi

ve a

nd

gene

ralis

able

stud

ies o

f QoL

of p

eopl

e liv

ing

with

dem

entia

in R

AC

Fs li

mits

kno

wle

dge o

f le

vels

of

QoL

and

fac

tors

ass

ocia

ted

with

Q

oL.

2. W

hat i

s the

QoL

of p

eopl

e liv

ing

with

de

men

tia i

n R

AC

Fs i

ndic

ated

by

a)

enga

gem

ent i

n ac

tivity

and

b) a

ppar

ent

emot

ions

(pos

itive

or n

egat

ive

affe

ct)?

Phas

e 2-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

QoL

st

udy

d ata

(de

scrip

tive

anal

ysis

of

data

col

lect

ed

usin

g th

e A

ctiv

ity a

nd A

ffect

Indi

cato

rs o

f Qua

lity

of

Life

(AA

IQO

L) m

easu

re)

Res

earc

h ex

plor

ing

the

role

of

‘mea

ning

ful

activ

ity’ i

n Q

oL fo

r old

er a

dults

has

focu

sed

on p

eopl

e w

ithou

t de

men

tia a

nd/o

r in

the

co

mm

unity

setti

ng.

3. W

hat i

s the

per

ceiv

ed ro

le o

f act

ivity

, in

clud

ing

‘mea

ning

ful

activ

ity’,

in t

he

QoL

of

peop

le li

ving

with

dem

entia

in

RA

CFs

?

Phas

e 2-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

QoL

st

udy

data

(bi

varia

te a

nd m

ultiv

aria

te a

naly

ses

of

asso

ciat

ions

be

twee

n R

AC

F an

d re

side

nt

char

acte

ristic

s and

AA

IQO

L su

mm

ary

scor

es)

Phas

e 3-

Qua

litat

ive

stud

y A

mor

e co

mpr

ehen

sive

und

erst

andi

ng o

f the

fa

ctor

s in

fluen

cing

res

iden

t en

gage

men

t in

‘m

eani

ngfu

l ac

tivity

’ in

RA

CFs

is

need

ed,

parti

cula

rly in

Aus

tralia

n R

AC

Fs.

4. W

hat f

acto

rs e

nabl

e or

inhi

bit a

cces

s to

, an

d en

gage

men

t in

, ac

tiviti

es,

incl

udin

g ‘m

eani

ngfu

l act

i viti

es’?

Phas

e 1-

Lite

ratu

re-b

ased

con

cept

ana

lysi

s Ph

ase

2 - S

econ

dary

qua

ntita

tive

anal

ysis

of A

usQ

oL

stud

y da

ta (

biva

riate

and

mul

tivar

iate

ana

lyse

s of

as

soci

atio

ns

betw

een

RA

CF

and

resi

dent

ch

arac

teris

tics a

nd A

AIQ

OL

sum

mar

y sc

ores

) Ph

ase

3- Q

ualit

ativ

e st

udy

The

liter

atur

e su

gges

ts th

at R

AC

F st

aff l

ack

the

com

pete

nce

to s

uppo

rt re

side

nts

with

de

men

tia to

eng

age

in ‘m

eani

ngfu

l act

ivity

’, bu

t litt

le is

kno

wn

abou

t wha

t stra

tegi

es th

ey

curr

ently

use

.

5. W

hat s

trate

gies

are

use

d by

staf

f to

a)

iden

tify

activ

ities

m

eani

ngfu

l to

in

divi

dual

re

side

nts

and

b)

crea

te

oppo

rtuni

ties f

or re

side

nt en

gage

men

t in

thes

e ac

tiviti

es?

Phas

e 3-

Qua

litat

ive

stud

y


3.2 PHASE 1- LITERATURE-BASED CONCEPT ANALYSIS

This phase of the research addressed the following research question:


dementia?

‘Meaningful activity’ is a term that is commonly used in the literature but it is not

consistently defined or used (Conti, Voelkl, & McGuire, 2008; Eakman, 2011; Mansbach et

al., 2017). It is also unclear how ‘meaningful activity’ differs from other related concepts such

as ‘engagement’ and ‘leisure activity’. In the absence of an existing formal or systematic

analysis of ‘meaningful activity’, and the lack of a universal definition of the concept, a concept

analysis was undertaken to identify critical concept attributes and aid conceptual

understanding.

This work has been published. The published paper can be found in Appendix 1.

3.2.1 Role of concepts in the development of theory

Concepts can be seen as “a mental image of a phenomenon, an idea or a construct in the

mind about a thing or an action” (Walker & Avant, 2011; p59). Through concepts, experiences

can be classified in clear and meaningful ways and communicated to others. Concepts can be

seen as the basic building blocks of theories (Schwartz-Barcott & Kim, 1986; Walker & Avant,

2011) and all theories are made up of a set of concepts (Bousso, Poles, & de Almeida Lopes

Monteiro da Cruz, 2014). Concepts that are ambiguous and not well defined are barriers to the

development of knowledge (Rodgers, 2000). Therefore, the analysis and development of

concepts is important for the understanding and development of theories that are clear and

relevant to health care practice (Bousso et al., 2014; Schwartz-Barcott & Kim, 1986).

3.2.2 Concept analysis method

The concept ‘meaningful activity’ was analysed using the eight-step approach described

by Walker and Avant: 1) select concept; 2) determine purpose; 3) identify uses; 4) define

attributes; 5) identify model case; 6) develop additional (borderline, related and contrary) cases;

7) identify antecedents and consequences; and 8) define empirical referents (Walker & Avant,

2011). The concept analysis process is iterative and these eight steps are not necessarily


sequential (Walker & Avant, 2011). Concept analysis is a theoretical assessment of the concept

based on the existing literature (Bousso et al., 2014). The intention is to draw on a broad range

of literature from various health discipline fields and related fields, and across different

population groups, but with a focus on a specific key concept. The outcomes of this process

include a list of defining attributes, model and additional cases, antecedents, consequences and

empirical referents for the concept. The defining attributes identified through a concept analysis

can be used to define the concept and the antecedents and consequences can be linked to the

attributes to suggest a conceptual model (O'Shea, Timmons, O'Shea, Fox, & Irving, 2019;

Thanakwang & Isaramalai, 2013; Windle, 2010). The purpose of this concept analysis (step 2)

was to propose a definition and conceptual model of ‘meaningful activity’.

3.2.3 Search strategy and inclusion criteria

The concept analysis was based on a broad review of the existing literature relating to

the concept of ‘meaningful activity’ (step 1). An expert health librarian was consulted when

developing this search strategy. Multiple databases (Scopus, MEDLINE, CINAHL, PubMed,

Academic Search Elite and Web of Science) were searched using the term ‘meaningful activity’

with literature related to people with and without dementia included, providing a broad

evidence base for the analysis. The search strategy was limited to using the search terms

‘meaningful activity’ and ‘meaningful activities’ as the purpose was to understand how the

specific term is currently understood and used in the literature (step 3). Related terms such as

individualised, tailored, preferred or purposeful activities were not included in the search as the

search focused only on ‘meaningful activity’. In order to make a useful contribution to

knowledge development, a concept analysis needs to maintain a specific focus (Walker &

Avant, 2011) and this approach has been used by previously published concept analyses

(Boggatz, 2015; Hermansson & Martensson, 2011; Heung & Yuen Loke, 2012; Jacelon,

Connelly, Brown, Proulx, & Vo, 2004). Future research may benefit from considering the

relevance of related concepts to ‘meaningful activity’ but it was outside of the scope of the

current concept analysis.

The review included papers meeting at least one of the following criteria:

Providing a definition of the concept ‘meaningful activity’

Qualitative studies exploring what makes activities meaningful

Quantitative studies investigating participation in ‘meaningful activities’


Reporting the development of a tool to measure ‘meaningful activity’ participation

Papers published before 1996 or written in a language other than English were excluded.

When undertaking a concept analysis it is important to limit the search by date of publication

as the meaning of concepts and how terms are used often change over time (Walker & Avant,

2011). In this concept analysis, 1996 was an appropriate search limit with person-centred care

becoming the dominant approach to dementia care at that time and with the publication of Tom

Kitwood’s influential book (Kitwood, 1997) on the topic. Few relevant papers were returned

from the earlier years in the search timeframe, confirming this.

3.2.4 Analysis

The analysis used Walker and Avant’s framework as a guide (Walker & Avant, 2011)

with the findings and conclusions of the included papers synthesised under the categories of

attributes (step 4), antecedents (step 7), consequences (step 7) and empirical referents (step 8)

of ‘meaningful activity’. The defining attributes are the characteristics that are most commonly

associated with the concept and the empirical referents are the ways these attributes can be

recognised or measured in practice (Walker & Avant, 2011). Antecedents are the events or

circumstances that need to occur for the concept to take place and consequences are the

outcomes of the concept (Walker & Avant, 2011). Model (step 5) and additional cases (step 6)

of ‘meaningful activity’ were constructed to illustrate the concept and its defining attributes

(Walker & Avant, 2011). While the “model case” is a pure exemplar that illustrates all of the

defining attributes of the concept, additional cases help to understand the concept by providing

examples of cases that contain either some or none of the defining attributes (Walker & Avant,

2011; p163). The fictional cases were developed from the findings of the literature-based

analysis, the researcher’s previous experience of research involving older adults and

discussions with colleagues about their research and clinical experience in the field.

3.3 PHASE 2- SECONDARY QUANTITATIVE ANALYSIS OF AUSTRALIAN

QUALITY OF LIFE STUDY DATA

After considering the defining attributes of ‘meaningful activity’ in the context of older

adults with dementia in Phase 1, the second phase of the study focused more specifically on


older adults living with dementia in RACFs. This phase of the study used existing data from

the AusQoL study (Beattie et al., 2015) in a unique analysis to address the following questions:

2. What is the QoL of people living with dementia in RACFs as indicated by a)

engagement in activity and b) apparent emotions (positive and negative affect)?



4. What factors enable or inhibit access to, and engagement in activities, including


3.3.1 Background- Australian Quality of Life Study and the scope of this analysis

The AusQoL study was a cross-sectional, exploratory study. The main aims of the

AusQoL study were to investigate QoL for older adults with dementia permanently residing in

Australian RACFs and explore relationships between QoL and other potential predictive

factors such as RACF-level, staff, family and resident characteristics (Beattie et al., 2015).

Insights were drawn from multiple perspectives including direct researcher assessment, facility

policies and procedures, resident self report, resident-specific clinical facility records, staff

involved in the care of residents and family members of participating residents. As illustrated

in Figure 3.2, in the AusQoL study, data was collected about: 1) resident demographic, health

and care characteristics; 2) resident QoL; 3) RACF demographic, environment and care

characteristics; and 4) staff approaches to caring for residents with dementia. The researcher

was employed to collect data for the AusQoL study at five sites in Tasmania between 2012 and

2013.

Ethical approval was previously provided by the Queensland University of Technology

(QUT) Human Research Ethics Committee (UHREC) for collection of the data analysed in

Phase 2 of this study (Approval number 1200000213).

The focus of the current analysis for this PhD study (as highlighted within the red box in

Figure 3.2) was on understanding resident QoL, as conceptualised by activity participation and

affect, as well as the resident and RACF characteristics associated with resident QoL. Several

papers have already been published from the broader AusQoL study (Beattie et al., 2018;

Beattie et al., 2015; Fielding et al., 2015; McMaster et al., 2018; Moyle et al., 2015) but the


current analysis is the first to use the AAIQOL data and investigate its association with RACF

and other resident variables.

Figure 3.2. Data collected as part of the AusQoL study with the focus of the current analysis within the red box

3.3.2 Participants, recruitment and consent

Participating RACFs

The sampling methodology used in the AusQoL study sought to produce a sample as

nationally representative as possible (Fielding et al., 2015). A stratified random sampling

design was used to identify and recruit RACFs with a focus on provider types and geographic

areas. Approximately 250 RACFs were excluded from the potential sample for various reasons

including: 1) those with fewer than 25 residents because recruitment of between five and 15

residents in these small RACFs would be unlikely; 2) those in remote and very remote areas as

classified by the Australian Bureau of Statistics due to logistical challenges of on-site data

Residents Demographic characteristics, functional abilities, nutritional

status, level of cognitive impairment, pain, dementia related behaviour changes

RACF Size, organisational type,

policy and program information, environmental

characteristics, person-d

Staff Approaches to dementia, experiences and strains in

dementia care

Resident QoL

Two measures:

Activity and Affect Indicators of Quality of

Life (AAIQOL)

Quality of Life in Alzheimer’s Disease

(QoL-AD)


collection; and 3) those in the Northern Territory as most RACFs were already excluded based

on their size or remoteness.

There were three stages of stratification which were disproportionate to ensure

representation due to the uneven distribution of provider types across geographic areas. The

initial stage of stratification was by state/territory with ten RACFs per state, except for

Tasmania and South Australia which had five RACFs each and ACT which had three RACFs.

The second stage of stratification focused on geographic areas within each state with more

RACFs selected from major cities, followed by inner regional and outer regional areas. Within

each of these areas, RACFs were stratified by provider type including charitable/religious,

public/community and private RACFs. Within each of these strata, the names of RACFs were

sorted randomly with recruitment working systematically down these lists until the assigned

number of RACFs were recruited. Chi-square goodness of fit tests indicated that this approach

produced an adequately representative sample in relation to geographic areas and provider type

(Fielding et al., 2015). The sample was not representative by state/territory due to the over-

sampling of smaller states and under-sampling of larger states. However, this was necessary to

achieve sample sizes in the smaller states that would provide statistically reliable results.

Individual participants

Within participating RACFs, staff identified potential resident participants who met the

inclusion criteria. There were four main inclusion criteria for residents: 1) resident in a

participating RACF; 2) have been a resident in that RACF for at least three months; 3) aged

over 65 years; and 4) a diagnosis of dementia recorded in their RACF clinical record (Beattie

et al., 2015). As the researchers did not have access to RACF resident details until informed

consent was obtained, an RACF staff member identified residents who met the inclusion

criteria for the study. The researcher met (either in person or over the phone) with staff

members involved in selecting potential participants to discuss the appropriate process and

provide them with a written outline and checklist of eligibility criteria.

Prior to approaching any potential resident participant, consent for their participation was

sought from their legally authorised representative. The researcher was more suited to seeking

informed consent from potential participants than an RACF staff member due to a better

understanding of the study and requirements of the process of informed consent. However, the

RACF needed to seek permission from the representatives to give their contact details to the


researcher. This used an opt-out approach with a letter sent from the RACF to the suitable

representatives with a brief overview of the research and giving them an opportunity to opt-out

of their details being given to the researcher if they responded within a given timeframe. This

was not an alternative to consent to participation in the study but an alternative to consent for

contact details to be given to the researcher. Seeking consent from representatives for this was

not feasible as it would be time-intensive for the RACF staff and/or would likely result in a

low response rate. The contact details of those who did not opt-out within the given timeframe

were provided to the researcher. A staff member at each participating RACF provided a list of

eligible residents whose authorised representative had not chosen to opt-out of being contacted

by the researchers. Eligible residents were allocated a random number in Excel and each

RACFs list was then sorted in ascending order to provide a random list of residents. The

authorised representative for each resident was then contacted by the researcher in the order of

the sorted spreadsheet from the top down until at least five and up to 15 residents were recruited

from each participating RACF. Proxy consent for resident participation in the study was sought

from these authorised representatives. They were provided with an information sheet and a

consent form to sign.

Each resident was only approached after proxy consent for their participation had been

given. A plain language information sheet was provided for each resident, which the researcher

also read through with them to facilitate their understanding. The capacity of potential resident

participants to provide informed consent was determined using the Evaluation to Sign Consent

measure (ESC) (Beattie et al., 2018; Beattie et al., 2015; Resnick et al., 2007). Proxy consent

for resident participation also included consent to completing this measure with the resident.

The measure assesses an individual’s understanding of what their participation in the research

would involve, any potential risks of participation and what to do if they experience discomfort

or want to discontinue their participation (Resnick et al., 2007). The researcher completed the

measure with potential participants after giving them an information sheet, explaining the

research and answering any questions. Residents demonstrated an ability to provide informed

consent if they provided correct responses to all questions in this measure. Although the ESC

only measures one aspect of capacity to provide informed consent, that is, understanding of the

purpose of the research and what the person will be asked to do in the study, it represents an

important effort to recognise and protect the dignity, autonomy and personhood of the person

with dementia by not automatically using proxy consent (Beattie et al., 2018). Approximately

20% of residents who completed the ESC were assessed as being able to provide their own


informed consent (Beattie et al., 2018). If the resident could demonstrate the capacity to provide

informed consent, they were invited to sign a consent form. Assent was sought from each

participating resident before each interaction with the researcher. Throughout the research

process, the researcher clarified with resident participants that they were willing to continue

participating. Refusal or reluctance to participate in the research by resident participants with

dementia was respected by the researcher in all cases.

For each participating resident, one RACF staff member was invited to complete a staff

informant questionnaire administered by one of the researchers to provide data about a range

of characteristics of that specific resident. The measures used in the staff informant

questionnaire (Table 2) were designed to be completed by proxy report. Staff members were

eligible to participate if they were employed at the participating RACF for at least three days

per week, providing direct care for the participating resident. They were required to have

known the resident for at least three months and had contact with them in the previous week.

Suitable staff members were identified by either the care manager or senior nurse at the RACF

and referred to the researcher. Informed consent was obtained from staff informants by

providing them with an information sheet and a consent form to sign.

A total sample of 53 RACFs and 440 residents participated in the study (Beattie et al.,

2018; Fielding et al., 2015).

3.3.3 Measures

Table 3.2 below describes the quantitative measures used to collect data in the AusQoL

study that were analysed in this study. The table also identifies the source of each measure. All

of these measures are well established and have been used in other QoL studies (Beattie et al.,

2015). Reflecting the complexity of QoL and the factors underlying it for people living with

dementia in RACFs, data was collected on a wide range of RACF and resident characteristics

(Beattie et al., 2015). Data was collected at the RACF level about RACF demographics, the

suitability of the environment for people with dementia and aspects of the RACF related to

providing person-centred care. This data was collected by direct researcher assessment based

on observations, review of policy and procedure documents and in consultation with each

RACF care manager. In relation to the residents participating in the study, data was collected

about their demographic characteristics, care needs and nutritional status through researcher

review of the RACF-held clinical records. Level of cognitive impairment was assessed by


resident interview while resident pain was assessed through researcher observation over the

course of the interview. Staff informant questionnaires were used to collect data on resident

agitation, wandering behaviour, verbal behaviours and depression. QoL was also examined

from the perspective of staff caregivers through staff informant questionnaires using the

Activity and Affect Indicators of Quality of Life (AAIQOL) measure (Albert et al., 1996)

which is dementia-specific and suitable for use in the long-term care setting. As the AAIQOL

data was the focus of this study, the measure will be described in more detail following the

table.

Data was collected across six states and one territory, with separate data collection teams

in each state and territory involved. Prior to the commencement of the study, all data collectors

met to receive training on the study protocol and measures used (Beattie et al., 2015). All data

collection teams were provided with an iPad to enable electronic data collection and online

submission of the data for central storage. In some cases, data was initially collected on paper

versions of the questionnaires and later entered electronically. The accuracy of data entry was

checked by independently checking 10% of the data collected on paper with the data entered

electronically.

Cha

pter

3: R

esea

rch

Des

ign

51

Tabl

e 3.

2. Q

uant

itativ

e m

easu

res f

rom

the

Aus

QoL

stud

y us

ed in

this

seco

ndar

y an

alys

is

Stud

y va

riab

le

Mea

sure

D

escr

iptio

n, sc

orin

g, v

alid

ity a

nd re

liabi

lity

Sour

ce

RAC

F le

vel c

hara

cter

istic

s R

AC

F en

viro

nmen

t En

viro

nmen

tal A

udit

Tool

(EA

T) (S

mith

et

al.,

2012

)

EAT

is a

72-

item

tool

with

10

subs

cale

s: s

afet

y; s

ize;

vis

ual a

cces

s; re

duct

ion

of

unne

cess

ary

stim

uli;

high

light

ing

of u

sefu

l stim

uli;

prov

isio

n fo

r wan

derin

g an

d ou

tdoo

r ar

eas;

fam

iliar

ity;

priv

acy

and

com

mun

ity;

com

mun

ity l

inks

; an

d do

mes

tic a

ctiv

ities

. Res

pons

e op

tions

for e

ach

item

are

‘Yes

’ or ‘

No’

with

poi

nts

obta

ined

from

‘Yes

’ res

pons

es a

nd u

sed

to c

alcu

late

a p

erce

ntag

e sc

ore

for e

ach

subs

cale

. The

tota

l EA

T sc

ore

is th

e m

ean

of th

e pe

rcen

tage

sco

res

from

all

10

subs

cale

s.

Stro

ng co

ncur

rent

val

idity

has

bee

n de

mon

stra

ted

betw

een

the E

AT

and

the w

idel

y re

cogn

ised

The

rape

utic

Env

ironm

ent

Scre

enin

g Su

rvey

for

Nur

sing

Hom

es,

incl

udin

g th

e Sp

ecia

l C

are

Uni

t En

viro

nmen

t Q

ualit

y Sc

ale

with

an

aver

age

agre

emen

t of

87%

on

indi

vidu

al it

ems .

The

EAT

has

high

leve

ls o

f in

ter-

rate

r re

liabi

lity

(.97)

(Fle

min

g, 2

011)

.

Res

earc

her

asse

ssm

ent

Pers

on-c

entre

d cu

lture

and

car

e Pe

rson

-Cen

tred

Envi

ronm

ent a

nd C

are

Ass

essm

ent T

ool

(PC

ECA

T) (B

urke

, St

ein -

Parb

ury,

Lu

scom

be, &

C

heno

wet

h, 2

016)

PCEC

AT

is a

76-

item

tool

with

thre

e do

mai

ns: o

rgan

isat

iona

l cul

ture

(29

item

s);

care

and

act

iviti

es, a

nd in

terp

erso

nal r

elat

ions

hips

and

inte

ract

ions

(17

item

s); a

nd

phys

ical

layo

ut a

nd d

esig

n (3

0 ite

ms)

. The

firs

t tw

o do

mai

ns w

ere

used

in th

is st

udy.

Item

resp

onse

s ar

e on

a L

iker

t sca

le fr

om 0

= N

ot a

t all

to 3

= A

ll th

e tim

e.

Item

scor

es a

re a

dded

to g

ive

a sc

ore

for e

ach

dom

ain

as w

ell a

s a to

tal P

CEC

AT

scor

e. T

here

is a

n ad

ditio

nal s

ectio

n w

ith q

uest

ions

abo

ut th

e ch

arac

teris

tics o

f the

R

AC

F/un

it su

ch a

s bed

num

bers

, res

iden

t mix

, sta

ffin

g nu

mbe

rs a

nd m

ix.

Face

val

idity

was

esta

blis

hed

by al

l ite

ms b

eing

cons

ider

ed re

leva

nt b

y at

leas

t tw

o th

irds o

f the

16

Del

phi p

anel

mem

bers

and

an ad

ditio

nal 1

5 ag

ed ca

re se

nior

nur

ses

and

man

ager

s. A

sses

smen

ts

of

inte

r-ra

ter

relia

bilit

y pr

oduc

ed

Pear

son’

s co

rrel

atio

ns ra

ngin

g fr

om .9

4 to

.96

and

intra

clas

s cor

rela

tion

coef

ficie

nts f

rom

.92

to .9

5 (B

urke

et a

l., 2

016)

.

Res

earc

her

and

care

m

anag

er

Cha

pter

3: R

esea

rch

Des

ign

52

Stud

y va

riab

le

Mea

sure

D

escr

iptio

n, sc

orin

g, v

alid

ity a

nd re

liabi

lity

Sour

ce

Ava

ilabi

lity

of

soci

al,

recr

eatio

nal a

nd

volu

ntee

ring

activ

ities

and

re

side

nt

invo

lvem

ent i

n ac

tivity

rela

ted

deci

sion

mak

ing

Polic

y an

d Pr

ogra

m

Info

rmat

ion

Form

(P

OLI

F) (L

emke

&

Moo

s, 19

80)

POLI

F co

mpr

ises

of 1

0 co

ncep

tual

sub

scal

es. T

he s

ubsc

ale

rele

vant

and

use

d in

th

is a

naly

sis i

s the

avai

labi

lity

of so

cial

-rec

reat

iona

l act

iviti

es. I

n th

is su

bsca

le, t

he

resp

onde

nt re

ports

the

freq

uenc

y at

whi

ch 1

3 sp

ecifi

ed a

ctiv

ities

are

pro

vide

d in

th

e R

AC

F. It

em re

spon

ses

are

on a

Lik

ert s

cale

from

0=N

ever

to 2

=Onc

e a

wee

k or

mor

e. T

he fr

eque

ncy

can

be su

mm

ed to

pro

vide

an ac

tivity

occ

urre

nce s

umm

ary

scor

e. O

ther

ind

ivid

ual

item

s fr

om t

he P

OLI

F us

ed i

n th

is st

udy

incl

ude

the

invo

lvem

ent o

f vol

unte

ers

and

resi

dent

s in

unp

aid

dutie

s w

ithin

the

RA

CF. T

he

16-it

em s

ubsc

ale

on re

side

nt in

volv

emen

t in

deci

sion

mak

ing

incl

udes

five

item

s re

late

d to

pla

nnin

g sp

ecifi

c ac

tiviti

es.

Item

res

pons

es i

nclu

de ‘

Staf

f de

cide

by

them

selv

es’,

‘Sta

ff d

ecid

e bu

t res

iden

ts h

ave

inpu

t’, ‘

Res

iden

ts d

ecid

e bu

t sta

ff

have

inpu

t’ an

d ‘R

esid

ents

dec

ide

by th

emse

lves

’.

A

ll su

bsca

les

of t

he P

OLI

F ha

ve m

oder

ate

to h

igh

inte

rnal

con

sist

ency

and

ad

equa

te t

o hi

gh t

est -r

etes

t re

liabi

lity.

The

ava

ilabi

lity

of s

ocia

l-rec

reat

iona

l ac

tiviti

es s

ubsc

ale

has

inte

r nal

con

sist

ency

of .

85 a

nd te

st-r

etes

t rel

iabi

lity

of .8

0 (L

emke

& M

oos,

1980

).

Res

earc

her

and

care

m

anag

er

Resi

dent

leve

l cha

ract

eris

tics

Dem

ogra

phic

s

Age

, gen

der,

mar

ital s

tatu

s, le

ngth

of

stay

at t

he R

AC

F, c

are

leve

l, tim

e si

nce

dem

entia

dia

gnos

is, p

refe

rred

lang

uage

C

linic

al

reco

rd

revi

ew

Leve

l of

cogn

itive

im

pairm

ent

Min

i-Men

tal S

tate

Ex

amin

atio

n (M

MSE

) (F

olst

ein

et a

l., 1

975)

MM

SE is

an

11-it

em to

ol fo

cusi

ng o

n th

e co

gniti

ve a

spec

ts o

f men

tal f

unct

ioni

ng.

The

first

par

t as

sess

es o

rient

atio

n, m

emor

y an

d at

tent

ion

and

requ

ires

verb

al

resp

onse

s. Th

e se

cond

par

t in

clud

es f

ollo

win

g ve

rbal

and

writ

ten

com

man

ds,

spon

tane

ousl

y w

ritin

g a

sent

ence

and

cop

ying

a d

iagr

am. P

oint

s ar

e ob

tain

ed b

y pr

ovid

ing

corr

ect a

nsw

ers

and

the

max

imum

tota

l sco

re is

30.

The

tota

l sco

re is

us

ed to

clas

sify

the s

ever

ity o

f cog

nitiv

e im

pairm

ent:

seve

re (0

-9 p

oint

s), m

oder

ate

(10 -

20 p

oint

s), m

ild (2

1-24

poi

nts)

or n

o co

gniti

ve im

pairm

ent (

25-3

0 po

ints

).

V

alid

ity te

stin

g ha

s dem

onst

rate

d th

at M

MSE

scor

es a

gree

with

clin

ical

opi

nion

s of

the p

rese

nce o

f cog

nitiv

e im

pairm

ent a

nd ca

n se

para

te th

ose w

ith d

emen

tia fr

om

Res

iden

t in

terv

iew

Cha

pter

3: R

esea

rch

Des

ign

53

Stud

y va

riab

le

Mea

sure

D

escr

iptio

n, sc

orin

g, v

alid

ity a

nd re

liabi

lity

Sour

ce

thos

e w

ithou

t cog

nitiv

e im

pairm

ent.

The

MM

SE is

relia

ble

on 2

4-ho

ur te

st re

test

us

ing

eith

er si

ngle

(.89

) or m

ultip

le (.

83) a

sses

sors

(Fol

stei

n et

al.,

197

5).

Nut

ritio

nal

stat

us

Min

i Nut

ritio

nal

Ass

essm

ent S

hort

Form

(M

NA

-SF)

(Kai

ser e

t al

., 20

09)

MN

A-S

F is

a 6

-item

too

l in

clud

ing

gene

ral

and

diet

ary

asse

ssm

ents

and

the

co

mpl

etio

n of

one

out

of

two

anth

ropo

met

ric m

easu

res

(cal

f ci

rcum

fere

nce

or

BM

I) . U

p to

two

or th

ree

poin

ts c

an b

e ga

ined

for e

ach

ques

tion

with

a m

axim

um

poss

ible

tot

al s

core

of

14.

The

tota

l sc

ore

is u

sed

to c

lass

ify i

ndiv

idua

ls a

s m

alno

uris

hed

(0-7

poi

nts)

, at

ris

k of

mal

nutri

tion

(8-1

1 po

ints

) or

nor

mal

nu

tritio

nal s

tatu

s (12

-14

poin

ts).

Usi

ng th

e M

NA

-SF

with

eith

er o

f the

ant

hrop

omet

ric m

easu

res,

less

than

10%

of

olde

r pa

rtici

pant

s ar

e m

iscl

assi

fied

as w

ell -n

ouris

hed

whe

n th

ey a

re n

ot,

as

dete

rmin

ed b

y th

e go

ld st

anda

rd p

hysi

cian

eva

luat

ion

(Kai

ser e

t al.,

200

9).

Res

earc

her

and

clin

ical

re

cord

re

view

Obs

erve

d pa

in

Pain

Ass

essm

ent i

n A

dvan

ced

Dem

entia

Sc

ale

(PA

INA

D)

(War

den,

Hur

ley,

&

Vol

icer

, 200

3)

PAIN

AD

is a

five

-item

tool

ass

essi

ng th

e pr

esen

ce a

nd d

egre

e of

pai

n ex

perie

nced

ba

sed

on o

bser

vatio

ns.

Obs

erva

tions

are

mad

e of

bre

athi

ng (

inde

pend

ent

of

voca

lisat

ion)

, ne

gativ

e vo

calis

atio

n,

faci

al

expr

essi

on,

body

la

ngua

ge

and

cons

olab

ility

with

each

rate

d on

a sc

ale f

rom

zero

to tw

o. T

he m

axim

um to

tal s

core

is

10

with

a h

igh

scor

e re

flect

ing

a gr

eate

r deg

ree

of p

ain.

The

tota

l sco

re is

use

d to

cla

ssify

ind

ivid

uals

as

havi

ng n

o ob

serv

ed p

ain

(0 p

oint

s),

mild

pai

n (1

-3

poin

ts),

mod

erat

e pa

in (4

-6 p

oint

s) o

r sev

ere

pain

(7-1

0 po

ints

). In

terr

ater

rel

iabi

lity

and

inte

rnal

con

sist

ency

of

the

PAIN

AD

are

ade

quat

e.

Con

stru

ct v

alid

ity w

as d

emon

stra

ted

by s

igni

fican

t cor

rela

tion

(.76)

bet

wee

n th

e PA

INA

D a

nd th

e D

isco

mfo

rt Sc

ale -

Dem

entia

of

Alz

heim

er T

ype.

Sta

tistic

ally

si

gnifi

cant

diff

eren

ces

in P

AIN

AD

sco

re h

ave

been

rec

orde

d be

fore

and

afte

r re

ceiv

ing

pain

med

icat

ion

(War

den

et a

l., 2

003)

.

Res

earc

her

obse

rvat

ion

Func

tiona

l ab

ility

A

CFI

AD

L D

omai

n (Q

1 -5)

(Dep

artm

ent o

f H

ealth

and

Age

ing,

20

09)

AC

FI q

uest

ions

focu

s on

day-

to-d

ay ca

re n

eeds

and

are p

rimar

ily u

sed

for r

esou

rce

allo

catio

n. T

he A

ctiv

ities

of

Dai

ly L

ivin

g (A

DL)

Dom

ain

asse

sses

eat

ing,

m

obili

ty,

pers

onal

hyg

iene

, to

iletin

g an

d co

ntin

ence

. Fo

r th

e fir

st f

our

area

s as

sess

ed, e

ach

AD

L is

sep

arat

ed in

to s

peci

fic c

are

need

s w

hich

are

rat

ed o

n th

e fo

llow

ing

scal

e: i

ndep

ende

nt;

supe

rvis

ion

incl

udin

g se

tting

up

activ

ities

or

stan

ding

by;

and

phys

ical

assi

stan

ce. A

ratin

g of

A to

D is

calc

ulat

ed fo

r eac

h A

DL

Clin

ical

re

cord

re

view

Cha

pter

3: R

esea

rch

Des

ign

54

Stud

y va

riab

le

Mea

sure

D

escr

iptio

n, sc

orin

g, v

alid

ity a

nd re

liabi

lity

Sour

ce

base

d on

the c

ombi

ned

leve

l of a

ssis

tanc

e req

uire

d fo

r the

care

nee

ds fo

r tha

t AD

L.

A ra

ting

of D

indi

cate

s hi

gh le

vels

of a

ssis

tanc

e re

quire

d fo

r all

care

nee

ds. F

or

cont

inen

ce, a

rat

ing

of A

to D

is c

alcu

late

d ba

sed

on th

e fr

eque

ncy

of u

rinar

y an

d/or

faec

al in

cont

inen

ce.

A

CFI

Q11

-12

(Dep

artm

ent o

f Hea

lth

and

Age

ing,

200

9)

AC

FI q

uest

ions

11

and

12 f

ocus

on

care

nee

ds i

n re

latio

n to

med

icat

ion

and

com

plex

hea

lth p

roce

dure

s. A

rat

ing

of A

to

D i

s ca

lcul

ated

with

a D

rat

ing

indi

catin

g hi

gher

car

e ne

eds.

In r

elat

ion

to m

edic

atio

n, a

rat

ing

of A

mea

ns th

e in

divi

dual

has

no

med

icat

ion

or se

lf -m

anag

es m

edic

atio

n. A

ratin

g of

D m

eans

the

indi

vidu

al re

quire

d m

ore

than

11

min

utes

of a

ssis

tanc

e w

ith m

edic

atio

n pe

r day

of

daily

adm

inis

tratio

n of

sub

cuta

neou

s, in

tram

uscu

lar

or i

ntra

veno

us d

rug.

In

rela

tion

to co

mpl

ex h

ealth

care

pro

cedu

res,

a rat

ing

of A

mea

ns th

e ind

ivid

ual d

oes

not

requ

ire a

ny p

roce

dure

s w

hile

a r

atin

g of

D m

eans

the

y re

quire

mul

tiple

co

mpl

ex h

ealth

pro

cedu

res.

Clin

ical

re

cord

re

view

Dep

ress

ion

Col

late

ral S

ourc

e G

eria

tric

Dep

ress

ion

Scal

e (C

S -G

DS)

(C

hang

, Edw

ards

, &

Lach

, 201

1)

CS-

GD

S is

a 3

0-ite

m to

ol w

hich

mea

sure

s th

e re

cent

occ

urre

nce

of d

epre

ssiv

e sy

mpt

oms i

n ol

der a

dults

as r

epor

ted

by a

n in

form

ed c

olla

tera

l sou

rce.

The

item

s ar

e the

sam

e as

thos

e in

the

orig

inal

GD

S bu

t wor

ded

to b

e su

itabl

e fo

r com

plet

ion

by a

col

late

ral

sour

ce.

Res

pons

e op

tions

are

‘Y

es’

or ‘

No’

with

res

pons

es

sugg

estiv

e of

dep

ress

ion

accr

uing

one

poi

nt. A

tot

al s

core

of

0 -9

sugg

ests

no

depr

essi

on, 1

0 -19

mild

dep

ress

ion

and

20-3

0 se

vere

dep

ress

ion.

Th

e 30

-item

CS-

GD

S ha

s de

mon

stra

ted

inte

rnal

con

sist

ency

with

an

alph

a of

.94

(Cha

ng e

t al.,

201

1).

Staf

f in

form

ant

ques

tionn

aire

Ver

bal

beha

viou

r V

erba

l Beh

avio

ur S

cale

(V

BS)

(Bec

k et

al.,

20

11)

VB

S m

easu

res

the

freq

uenc

y of

eig

ht ty

pes

of re

side

nts’

ver

bal b

ehav

iour

s. St

aff

com

plet

ing

the

tool

are

then

ask

ed to

ass

ess

the

leve

l of

disr

uptio

n, a

ggre

ssio

n,

nurs

ing

time r

equi

red,

man

agea

bilit

y an

d en

joym

ent b

y th

e res

iden

t rel

ated

to ea

ch

verb

al b

ehav

iour

. The

se a

re a

sses

sed

on a

Lik

ert s

cale

from

1=

the

leas

t ext

rem

e de

mon

stra

tion

of th

e be

havi

our (

e.g.

not

dis

rupt

ive

at a

ll) to

7=

the

mos

t ext

rem

e de

mon

stra

tion

of th

e be

havi

our (

e.g.

ext

rem

ely

disr

uptiv

e). T

he e

ight

beh

avio

urs

fit in

to tw

o su

bsca

les:

VB

S no

n-ag

gres

sive

; and

VB

S ag

gres

sive

. Sco

res

can

be

Staf

f in

form

ant

ques

tionn

aire

Cha

pter

3: R

esea

rch

Des

ign

55

Stud

y va

riab

le

Mea

sure

D

escr

iptio

n, sc

orin

g, v

alid

ity a

nd re

liabi

lity

Sour

ce

sum

med

to c

alcu

late

subs

cale

tota

ls a

nd th

e su

bsca

les a

dded

toge

ther

to c

alcu

late

th

e ov

eral

l VB

S sc

ores

. R

elia

bilit

y of

the

VB

S w

as d

emon

stra

ted

by a

n in

tra-c

lass

cor

rela

tion

of .8

0 (B

eck

et a

l., 2

011)

. A

gita

tion

Coh

en M

ansf

ield

A

gita

tion

Inve

ntor

y (C

MA

I) (C

ohen

-M

ansf

ield

, 198

6)

CM

AI i

s a

29-it

em to

ol m

easu

ring

the

freq

uenc

y of

man

ifest

atio

ns o

f a ra

nge

of

agita

ted

beha

viou

rs. F

requ

ency

of m

anife

stat

ion

in th

e pr

evio

us fo

rtnig

ht is

rate

d on

a s

cale

of 1

= ne

ver t

o 7=

sev

eral

tim

es a

n ho

ur. I

t can

be

used

as

a to

tal s

core

fo

r ove

rall

agita

tion

or ca

n be

sepa

rate

d in

to th

ree s

ubsc

ales

: agg

ress

ive b

ehav

iour

, ph

ysic

ally

non

-agg

ress

ive

beha

viou

r and

ver

bally

agi

tate

d be

havi

our.

Inte

rnal

con

sist

ency

for t

he C

MA

I ran

ged

from

.86

to .9

1 ac

ross

day

, eve

ning

and

ni

ght s

hifts

. Int

erra

ter r

elia

bilit

y fo

r the

tota

l CM

AI (

.41)

, the

phy

sica

l agg

ress

ion

subs

cale

(.66

) and

the

verb

al a

gita

tion

subs

cale

(.61

) is a

ccep

tabl

e bu

t the

phy

sica

l no

n -ag

gres

sion

sub

scal

e ca

nnot

be

used

relia

bly

acro

ss o

bser

vers

(.26

). V

alid

ity

of th

e C

MA

I was

dem

onst

rate

d by

sign

ifica

nt c

orre

latio

ns b

etw

een

the

CM

AI a

nd

the

Beh

avio

ural

Pat

holo

gy in

Alz

heim

er’s

Dis

ease

inst

rum

ent a

nd B

ehav

iour

al

Synd

rom

es S

cale

for

Dem

entia

, bot

h co

mm

only

use

d m

easu

res

of b

ehav

iour

al

sym

ptom

s of d

emen

tia (F

inke

l, Ly

ons,

& A

nder

son,

199

2).

Staf

f in

form

ant

ques

tionn

aire

Wan

derin

g be

havi

our

Rev

ised

Alg

ase

Wan

derin

g Sc

ale -

Lon

g Te

rm C

are

Ver

sion

(R

AW

S -LT

C) (

Alg

ase

et a

l., 2

004)

RA

WS-

LTC

is a

20-it

em to

ol as

sess

ing

wan

derin

g be

havi

ours

incl

udin

g pe

rsis

tent

w

alki

ng, e

lopi

ng b

ehav

iour

and

spa

tial

diso

rient

atio

n. I

t is

onl

y co

mpl

eted

for

in

divi

dual

s who

are

am

bula

nt. I

tem

resp

onse

s are

on

a Li

kert

scal

e fr

om 1

= N

ever

to

4=

On

a da

ily b

asis

. The

max

imum

tota

l sco

re is

80.

In

tern

al c

onsi

sten

cy w

as d

emon

stra

ted

by a

Cro

nbac

h’s

alph

a fo

r th

e ov

eral

l R

AW

S of

.87 -

.88

acro

ss tw

o sa

mpl

es, w

ith a

ccep

tabl

e an

d co

nsis

tent

alp

has

for

each

sub

scal

e. F

air

to g

ood

inte

r-ra

ter

relia

bilit

y ha

s be

en in

dica

ted

with

kap

pa

valu

es o

ver .

40 fo

r 17

of th

e 27

item

s. V

alid

ity w

as d

emon

stra

ted

by s

igni

fican

t co

rrel

atio

ns b

etw

een

over

all R

AW

S sc

ores

and

mos

t sub

scal

es w

ith a

sing

le it

em

indi

cato

r of w

ande

ring

(“Th

is re

side

nt is

a w

ande

rer”

) (A

lgas

e et

al.,

200

4).

Staf

f in

form

ant

ques

tionn

aire

Cha

pter

3: R

esea

rch

Des

ign

56

Stud

y va

riab

le

Mea

sure

D

escr

iptio

n, sc

orin

g, v

alid

ity a

nd re

liabi

lity

Sour

ce

Qua

lity

of li

fe

Act

ivity

and

Aff

ect

Indi

cato

rs o

f Qua

lity

of

Life

(AA

IQO

L) (P

roxy

ve

rsio

n - A

ctiv

ity a

nd

affe

ct) (

Alb

ert e

t al.,

19

96)

The

AA

IQO

L co

mpr

ises

tw

o se

para

te s

cale

s- a

ctiv

ity a

nd a

ffec

t. A

AIQ

OL-

A

ctiv

ity s

cale

mea

sure

s op

portu

nitie

s fo

r par

ticip

atio

n in

15

spec

ified

act

iviti

es,

freq

uenc

y of

par

ticip

atio

n in

the p

revi

ous t

wo

wee

ks an

d w

heth

er th

at p

artic

ipat

ion

was

enj

oyed

. O

ppor

tuni

ties

for

parti

cipa

tion

and

enjo

ymen

t ar

e m

easu

red

dich

otom

ousl

y (1

=yes

/0=n

o) w

hile

res

pons

e op

tions

for

fre

quen

cy a

re 0

=nev

er, 1

=occ

asio

nally

(<

3 tim

es p

er w

eek)

or 2

=fre

quen

tly (>

3 tim

es p

er w

eek)

. Sum

mar

y sc

ores

can

be

calc

ulat

ed fo

r eac

h w

ith m

axim

um to

tal s

core

s of 1

5 fo

r act

ivity

opp

ortu

nitie

s and

en

joym

ent a

nd a

max

imum

tota

l sco

re o

f 30

for

the

freq

uenc

y of

par

ticip

atio

n.

The

App

aren

t Em

otio

n sc

ale

mea

sure

s pos

itive

and

neg

ativ

e af

fect

reco

gnis

ed b

y fa

cial

and

bod

y ex

pres

sion

as

wel

l as

beha

viou

r. A

5-p

oint

sca

le r

angi

ng f

rom

1=

neve

r to

5=3+

tim

es p

er d

ay is

use

d to

est

imat

e th

e fr

eque

ncy

of s

igns

of e

ach

type

of e

mot

ion.

Sum

mar

y sc

ores

are

cal

cula

ted

sepa

rate

ly fo

r pos

itive

aff

ect a

nd

nega

tive

affe

ct w

ith a

max

imum

tota

l sco

r e o

f 15

each

. A

dequ

ate

test

-ret

est

relia

bilit

y ha

s be

en d

emon

stra

ted

for

the

five

affe

ct i

tem

s (c

orre

latio

ns r

angi

ng f

rom

.53

for

ple

asur

e to

.92

for

ang

er).

Of

the

activ

ity

oppo

rtuni

ty a

nd p

artic

ipat

ion

item

s, re

liabi

lity

is co

nsid

ered

exc

elle

nt fo

r 12

of th

e 15

act

iviti

es w

ith k

appa

val

ues a

bove

.60.

Rel

iabi

lity

is a

lso

cons

ider

ed e

xcel

lent

fo

r th

e ac

tivity

enj

oym

ent i

tem

s w

ith k

appa

val

ues

abov

e .7

0 fo

r 14

of

the

15

activ

ities

. Th

e va

lidity

of

the

AA

IQO

L w

as a

sses

sed

and

conf

irmed

by

the

sim

ilarit

y of

f am

ily c

areg

iver

and

sta

ff c

areg

iver

repo

rts o

f res

iden

t QoL

(Alb

ert

et a

l., 1

996)

.

Staf

f in

form

ant

ques

tionn

aire


The AAIQOL

The AAIQOL comprises two scales, measuring both objective and subjective elements

of QoL, and was the focus of this study (Albert et al., 1996). Using the AAIQOL, staff

caregivers rated participating residents’ level of participation in activity as well as their

observed affect. The tool measures opportunities for participation in 15 specified activities,

frequency of participation in the previous two weeks and whether that participation was

enjoyed. Opportunities for participation and enjoyment are measured dichotomously (yes/no)

while response categories for frequency are “none”, “few” (≤3 times per week) or “often” (>3

times per week). A range of activities are included, and these are listed in Figure 3.3 below. A

limitation of this measure recognised by the authors is that proxy report of activity participation

does not allow for judgements about the extent to which the individual comprehends the

activity or engages with the activity in ways that are meaningful to them (Albert et al., 1996).

Measuring enjoyment of participating in certain activities attempts to address this limitation.

Figure 3.3. Activities included in the Activity and Affect Indicators of Quality of Life (AAIQOL) measure

1. Being outside, going for walks, enjoying nature

2. Being with pets or animals, watching animals

3. Getting together with family or friends

4. Talking to family or friends on the telephone

5. Going to movies, museums or entertainment

6. Going to church, synagogue or religious events

7. Going shopping for groceries, clothes etc.

8. Going for a ride in the car, train or bus

9. Reading or having stories read to him/her

10. Listening to radio, tapes or watching TV

11. Exercising, playing or watching sports

12. Playing games or cards, doing crosswords or puzzles

13. Doing handiwork or crafts

14. Gardening, plant care, indoors or outdoors

15. Completing a difficult task


The Apparent Emotion scale of the AAIQOL, completed retrospectively by staff

caregivers, measures three positive affects (pleasure, interest and contentment) and three

negative affects (anger, anxiety and depression), recognised by facial and body expression as

well as behaviour. A 5-point scale ranging from “never” to “3+ times per day” is used to

estimate the frequency of signs of each type of emotion. Positive affect scores can range from

three to 15. For residents with a positive affect score of three, staff never observed signs of

pleasure, interest or contentment. Residents with a score of 15 exhibited signs of these emotions

several times a day. Negative affect scores can also range from three to 15 with a score of three

indicating no signs of anger, anxiety or depression. For residents with a negative affect score

of 15, staff observed signs of these emotions several times a day. The AAIQOL was chosen as

one of the measures of QoL used in the AusQoL study because it allows for a multi-perspective

focus on QoL as it can be used for both self and proxy report. This measure was also chosen

because there is a version specific for the long-term care environment.

Affect and depression

Affect and depression were both measured in this study and it is important to clearly

understand these variables and highlight the differences between them. A feeling state (mood)

becomes an affect when it is observable, for example, as the overall demeanour or tone of the

person. Positive and negative affect are high order constructs, each including a range of

emotional states (Watson, 2005). Negative affect is related to the experience of unpleasant

mood states such as sadness, anger and irritability while positive affect includes mood states

such as excitement, pleasure and interest (Albert et al., 1996; Danhauer et al., 2013). Disturbed

affect is associated with a range of mental illnesses including depression, anxiety, panic

disorder and social phobia (Watson, 2005; Werner-Seidler, Banks, Dunn, & Moulds, 2013).

Positive and negative affect are distinct constructs, not merely opposites on a continuum of

affect (Anas & Akhouri, 2013; Danhauer et al., 2013). This is illustrated by high negative affect

being associated with both depression and anxiety while low positive affect is often associated

with depression but not anxiety (Anas & Akhouri, 2013; Watson, 2005; Werner-Seidler et al.,

2013). In addition to this, pleasurable and engaging events can increase positive affect while

not necessarily lessening the experience of negative affect (Lawton, 1994b).

Conversely, depression is a serious mental illness characterised by symptoms such as

changes in weight, sleep patterns and energy levels, negative thoughts, impaired concentration

and decision making and the changes in affect described above (American Psychiatric


Association, 2013). Previous studies have found that up to half of all RACF residents have

some degree of depression (Erdal et al., 2017; Ulbricht, Rothschild, Hunnicutt, & Lapane,

2017; van Beek, Frijters, Wagner, Groenewegen, & Ribbe, 2011). A recent US study reported

that among residents with depression, very few received psychological therapy, approximately

one-quarter received antidepressant medication as the only form of treatment and almost half

did not receive any treatment (Ulbricht et al., 2017). Residents with severe cognitive

impairment were less likely to receive treatment for depression (Ulbricht et al., 2017).

Although related to each other, depression and negative affect are distinct constructs that

cannot be used or understood interchangeably (Danhauer et al., 2013). Some fluctuations in

mood are normal and not necessarily indicative of depression, with negative affect experienced

by individuals with and without depression (Anas & Akhouri, 2013; Danhauer et al., 2013). It

is the more continuous and ongoing experience of high negative affect that may suggest

depression (Anas & Akhouri, 2013). Additionally, depression is more than negative affect, with

several non-mood symptoms also experienced in the domains of thinking, behaviour and

physical functioning (Danhauer et al., 2013; Watson, 2005). The broad range of depression

symptoms is reflected in the items included in the Geriatric Depression Scale (GDS)

addressing, for example, withdrawal from activities and social gatherings, restlessness, energy

levels and concentration in addition to the experience of positive and negative emotions

(Yesavage et al., 1982).

3.3.4 Data analysis

The quantitative data for this phase of the study was stored and analysed using SPSS

software for statistical analysis (IBM). The analysis was descriptive and exploratory, shedding

light on the QoL experienced by people living in RACFs as conceptualised by the AAIQOL

measure.

Calculating summary scores and modifying variables before analysis

Activity participation was measured by staff-report using the AAIQOL measure (Albert

et al., 1996). The first part of the AAIQOL asked respondents to report whether the resident

had the opportunity to participate in each of the 15 specified activities in the previous two

weeks. Where respondents reported that there had been opportunities for activity participation,

they were then asked to report the frequency of participation as either ‘none’, ‘few’ or ‘often’.


For cases with missing activity opportunity data, the activity frequency response was checked

to determine if a ‘yes’ response could be assumed (i.e. when activity frequency was reported

as ‘few’ or ‘often’). Cases with missing activity opportunity data were then removed from the

dataset.

Using data from the AAIQOL, three summary activity scores were calculated (Albert et

al., 1996). An activity opportunity score was calculated for each resident by adding the number

of activities they had the opportunity to participate in over the previous two weeks of the 15

specified activities. A score of activity frequency was calculated with “few” accruing one point

and “often” accruing two points, allowing for a maximum possible score of 30. An activity

enjoyment score was calculated for each resident by adding the number of activities enjoyed.

Higher summary activity scores indicated opportunities for participation in a greater range of

activities, a greater frequency of activity participation and enjoyment of a greater number of

activities. Data on the frequency of positive and negative emotions among residents as reported

by staff caregivers completing the AAIQOL was also analysed. Summary scores were

calculated separately for positive affect and negative affect (Albert et al., 1996). Each has a

possible range of scores from three to 15.

Changes were made to some variables for the analysis. The no cognitive impairment and

mild cognitive impairment categories of the MMSE were combined due to the small number

of participants fitting into these categories. Additionally, having a recorded dementia diagnosis

was an inclusion criterion for this study so it is likely that those with no cognitive impairment

according to the MMSE score had mild symptoms of cognitive impairment. Few participants

were observed to have moderate or severe pain, so these categories were also combined.

Overall verbal behaviour and the subscales were originally continuous variables. However,

data for these variables was highly skewed with many residents not exhibiting these behaviours

and a few outliers exhibiting very frequent verbal behaviours. To address this, these variables

were changed to dichotomous variables, with residents categorised as exhibiting no verbal

behaviour or some verbal behaviour.

Descriptive analyses

Analysis of this data initially included confirmation of normal distributions and

descriptive univariate statistics reporting total scores as well as means and standard deviations

(or medians and interquartile range if non-normal distributions were detected) for the relevant


individual measures. Normality was determined by a skewness value between -2 and 2.

Descriptive analysis of the three summary activity scores and the two affect summary scores

of the AAIQOL were used to address research question two, assessing the QoL of those living

with dementia in Australian RACFs. Descriptive analysis of the other measures was used to

describe the sample of participating RACFs and residents.

Bivariate and multivariate analyses

Potential relationships between resident and RACF characteristics and the AAIQOL

summary scores were explored using bivariate and multivariate analyses. A wide range of

independent variables were included in these analyses covering RACF demographic, physical

and policy characteristics as well as resident demographic, health, care and dementia related

behaviour change characteristics. These analyses addressed research questions three and four,

considering the role of activity in resident QoL and the factors associated with activity

engagement.

Pearson correlations were used to test potential bivariate associations between the

summary indicators of QoL and continuous independent variables such as the suitability of the

RACF environment as measured by the EAT, the frequency of resident agitation (CMAI) and

resident wandering behaviour (RAWS). All dependent variables were normally distributed. To

test the association between the summary indicators of QoL and dichotomous independent

variables such as gender and verbal behaviour, the independent t-test was used. Levene’s Test

was used to test the homogeneity of variance across groups for each of these dichotomous

variables. When the variance was not equal across groups, the Unequal Variance t-test was

used. The data also contains many variables with more than two categories. For example, the

RACF size, resident nutritional status (MNA-SF), level of cognitive impairment (MMSE) and

severity of depression (CS-GDS). ANOVA was used to test the potential relationship between

these variables and the summary indicators of resident QoL.

Multivariate analyses were used to evaluate the effect of demographic variables as well

as other resident and RACF-level variables on QoL as measured by the AAIQOL. Hierarchical

multiple linear regression models were developed for four of the AAIQOL summary indicators

of QoL (activity opportunity, activity participation, positive affect and negative affect). As

almost all activities that were participated in were also enjoyed, regression models were not

developed for activity enjoyment. Hierarchical multiple linear regression was chosen because


of the large number of independent variables in this study. Using this type of multiple

regression, the variables can be added to the regression equation in substantively meaningful

blocks and the effect of each category of variables on the outcome can be estimated (Keith,

2019). In addition to this, variables can be added in a predetermined order. Correlations

between independent variables were checked and where correlations of 0.6 or above were

found only one variable was included in the models. Associations between categorical

independent variables were explored using contingency tables. Independent variables were

added to the models in the following blocks: 1) RACF characteristics; 2) resident

demographics; 3) resident health and care characteristics; and 4) variables representing

dementia related behaviour changes. After adding each block of variables to the models, any

insignificant variables were removed before adding the next block of variables.

As the wandering behaviour measure was not completed for non-ambulant residents,

inclusion of this variable greatly reduced the sample size used to develop the models.

Therefore, separate models with and without the wandering behaviour variable were

developed. In the models that included wandering behaviour, CMAI physically non-aggressive

behaviour was removed due to the high correlation between the two variables in this data. A

relationship between wandering behaviour and physically non-aggressive agitated behaviour

was also found in previous research (Algase, Antonakos, Beattie, Son Hong, & Beel-Bates,

2008).

An understanding of the resident or RACF-level characteristics that are associated with

resident activity participation informed additional factors that could be explored in relation to

‘meaningful activity’ in Phase 3 of the study.

3.4 PHASE 3- QUALITATIVE STUDY

This qualitative phase of the study addressed the following research questions:

1. What are the fundamental attributes of a ‘meaningful activity’ for people living

with dementia?



4. What factors enable or inhibit access to, and engagement in activity, including

‘meaningful activity’?


5. What strategies are used by staff to a) identify activities meaningful to individual

residents and b) create opportunities for resident engagement in these activities?

Phase 3 built on the findings of Phases 1 and 2 and involved a qualitative study to

understand what makes activities meaningful for people living with dementia in RACFs and to

further develop the proposed theoretical model of ‘meaningful activity’ for older adults living

with dementia. Like Phase 2, the qualitative study focused on the context of RACF residents

with dementia. The theoretical literature-based analysis of ‘meaningful activity’ provided a

preliminary understanding of the concept. However, interviews and focus group interviews

with residents with dementia, their families and RACF staff provided an opportunity to explore

their perceptions of the antecedents, defining attributes and consequences of ‘meaningful

activity’ in the context of people living with dementia in RACFs. The qualitative study further

refined and developed the model of ‘meaningful activity’, considering the practical relevance

and meaning of the concept in the specific context (Walker & Avant, 2011).

The Queensland University of Technology (QUT) Human Research Ethics Committee

(UHREC) provided ethical approval for this study to be conducted (Approval number

1700000521, Appendix 2).

3.4.1 Participants, recruitment and consent

Recruitment of participants was a two-tiered process (Lingler, Jablonski, Bourbonniere,

& Kolanowski, 2009), commencing with the recruitment of RACFs at the institutional level

followed by recruitment of individuals within the participating RACFs.

Study sites

For this phase of the study, RACFs were purposively selected to seek variation in

location, organisational type and RACF size. RACFs with fewer than 25 residents were

excluded.

Initially, the researcher contacted care managers of RACFs about potentially

participating in the study. Initial contact was made by telephone to introduce the main aims of

the study and what participation would involve. If the care manager expressed interest in the

RACF participating in the study, this was followed up with an email and meetings providing

further details and seeking their permission to include the RACF in the study.


Participant group 1: Residents

The sampling of residents was purposive (Liamputtong, 2013) to encourage variation in

gender, age and severity of dementia. The focus was on developing a rich and deep

understanding of the key concepts rather than recruiting a greater number of participants.

Potential resident participants were identified by RACF staff using the same approach

described for Phase 2 above. Residents had to meet three criteria to participate in the study.

Inclusion criteria:

permanent residents of the RACF (i.e. not in respite care)

aged 65 years or over

a documented medical diagnosis of dementia with a 3MS score between 50-77 out

of 100 (moderate cognitive impairment) (Teng & Chui, 1987)

Using the 3MS, a lower score indicates more severe cognitive impairment. A score of 49

or lower indicates severe cognitive impairment while a score higher than 77 suggests no

cognitive impairment. A 3MS score between 50 and 77 was chosen as an inclusion criterion as

it included residents who had dementia but were likely to be able to participate in a semi-

structured interview. Residents were excluded if: 1) they had a speech or hearing impairment

that would have prevented them from participating in a semi-structured interview or; 2) if they

were under public guardianship. Residents under public guardianship were excluded due to

potential difficulties obtaining consent and identifying a suitable family member to participate

in an interview.

Following the recruitment and consent process used in Phase 2, the RACF contacted the

authorised representatives of potential resident participants to give them the opportunity to opt-

out of being contacted by the researcher. The RACF then provided the researcher with a list of

eligible residents and the contact details of their authorised representative. The researcher

contacted these authorised representatives, who were typically family members, by telephone

to provide them with more information about the study and to seek proxy consent for the

participation of the resident as well as consent for their own participation. Residents were not

approached until proxy consent for their participation had been obtained. Making contact with

someone who knows the person with dementia first also provided opportunities to discuss

behaviours and signs that the person typically displays when in a state of wellbeing, what may

trigger a decline in their wellbeing, how that could be recognised and how they typically


provide consent or agreement for daily activities or procedures (Dewing, 2007; Novek &

Wilkinson, 2017). It allowed for discussion with the family member about whether the resident

was aware of their dementia diagnosis, if disclosure of the dementia focus of the study may

cause concern for the resident and any potentially sensitive topics to avoid (Novek &

Wilkinson, 2017). This knowledge helped the researcher when seeking assent from the resident

and to recognise if they were in discomfort or distress. The authorised representative and/or a

family member was invited to join the resident for an initial discussion with the researcher

about the study and what participation involved. This provided support for the resident. The

process of seeking informed consent from participating residents followed the process

described for Phase 2, using a plain language information sheet (Appendix 3) and the ESC

measure (Resnick et al., 2007).

Participant group 2: Family members

Proxy reports from family members and care staff are commonly included in studies with

people with dementia and are particularly useful to supplement the data provided by residents

with higher levels of cognitive impairment (Beattie et al., 2015). A family member of each of

the participating residents was also invited to participate in the study. All family members were

also the authorised representative of participating residents so were contacted, recruited and

provided consent through the process outlined in the ‘Participants, recruitment and consent’

section for Phase 2 above. All participating family members were provided with an information

sheet and signed a consent form (Appendix 3). Family members participating in the study were

required to meet the following criteria.

Inclusion criteria:

family member of a participating resident

18 years of age or older

Participant group 3: RACF staff informants

An RACF staff member for each participating resident was also invited to participate.

These participants were required to meet four criteria.


Inclusion criteria:

Provide direct care for a participating resident

Have known the specific resident for at least two months

Had contact with the specific resident over the previous week

Able to read, speak and understand English

Recruitment of RACF staff as proxy informants for individual participating residents was

through the referral of a senior nurse or activity co-ordinator at the RACF. To obtain informed

consent, all staff completing a staff informant questionnaire were provided with an information

sheet and a consent form to sign (Appendix 3).

Participant group 4: RACF staff

The sampling of RACF staff to participate in focus group interviews across the

participating RACFs was purposive, based on staff roles and level of involvement with

residents. However, this sample of participating staff was not intended to be representative of

all RACF care and activity staff as it was dependent on the individuals who volunteered to

participate. These staff participants met the following criteria.

Inclusion criteria:

Have direct contact with residents with dementia

Employed in a care-related or activity provision role

Able to speak and understand English

These participants were recruited through the referral of a senior nurse or activity co-

ordinator at the RACF as well as advertising on appropriate facility noticeboards. Prior to the

commencement of the focus group interview, participants were provided with an information

sheet and a consent form to sign (Appendix 3).


3.4.2 Procedures

Various methods were used to explore the concept of ‘meaningful activity’, including a

review of each facility environment, semi-structured individual interviews and focus group

interviews.

Facility environment review

Information was collected about the RACF environment to gain an understanding of the

context of each participating RACF in which ‘meaningful activity’ was explored. The

Environmental Audit Tool was used to assess the suitability of the RACF for residents with

dementia (Smith et al., 2012). The Person-Centred Environment and Care Assessment Tool

focused on the degree to which the principles of person-centred care were present within the

RACF (Burke et al., 2016). These measures were completed by the researcher (see Appendix

4).

Resident interviews (participant group 1)

The interviews focused on exploring the residents’ accounts of ‘meaningful activity’ and

how they interpreted the concept in their daily lives, including reflection on past events and

experiences (Hubbard, Downs, et al., 2003). The content and focus of the interview schedule

were informed by the findings of Phases 1 and 2 of this study. The questions used to guide the

semi-structured resident interviews are listed in Figure 3.4. With participant consent,

interviews were audio recorded and transcribed verbatim.


Figure 3.4. Resident interview schedule

1. Tell me what it’s like to live here

2. Tell me about some of the things you do during the day

3. These things that you’ve told me about, are these things that you enjoy?

4. What makes an activity meaningful to you?

5. Tell me about an activity that is meaningful to you

6. How important is it for you to be able to do that activity?

7. What sort of things would help you to be able to do that activity?

8. Is there anything that makes it hard for you to do these types of activities?

Quantitative measures were used to capture descriptive data about the demographic,

health and QoL characteristics of the participating residents (Appendices 5, 6 and 7). These

were the same measures used in the AusQoL Study (see Table 3.2). However, the MMSE was

replaced with the 3MS in this phase of the study. Some of these measures were completed with

residents (QoL-AD, CS-GDS, AAIQOL-Activity indicators) or through researcher observation

(PAINAD) at the end of the semi-structured interview (Appendix 5). Other measures required

review of each resident’s facility-held clinical record (demographics, medications, ACFI,

MNA-SF, see Appendix 6) or completion of a questionnaire with a staff informant (CMAI,

AAIQOL- Apparent emotion and activity indicators, RAWS, CS-GDS, QoL-AD, VBS, see

Appendix 7).

Resident interviews were held in a private place in the RACF, most in the resident’s

room. Interviews, including the completion of quantitative measures, lasted up to 60 minutes

for each participating resident.

Family member interviews (participant group 2)

Semi-structured interviews with family members of the residents participating in the

study provided a deeper understanding of the relevance of ‘meaningful activity’ in the context

of their family member’s life. Their perceptions of what makes an activity meaningful, enablers

and barriers to participation in these activities and outcomes of participation were also

explored. Figure 3.5 outlines the specific questions. The interviews were conducted either face-

to-face at the relevant RACF or over the phone, were audio recorded and transcribed. They


were approximately 30 minutes in length. Demographic information was also collected about

participants (Appendix 8).

Figure 3.5. Family member interview schedule

1. What do you think makes activities meaningful to your family member?

2. What do you think makes ‘meaningful activity’ different to other types of activities

for your family member? [prompt: e.g. leisure activities]

3. What do you think are the most important features of an activity we can offer to

people living with dementia?

4. Can you give me an example of an activity you think your family member finds

meaningful?

5. What is the value of participating in ‘meaningful activities’? What sort of changes

do you see in your family member?

6. What do you think helps your family member to participate in these kinds of

activities?

7. What do you think are the barriers to your family member participating in these

activities?

8. How could these barriers be addressed?

Staff informant questionnaire (participant group 3)

As outlined in Table 3.2 above, staff informants completed various measures (CMAI,

AAIQOL- Apparent emotion and activity indicators, RAWS, CS-GDS, QoL-AD, VBS) about

an individual resident’s health and QoL (Appendix 7). These measures were administered face-

to-face by the researcher and took approximately 60 minutes to complete for each resident.

Staff focus group interviews (participant group 4)

Semi-structured focus group interviews were held with care and activity staff to gain their

perspective on what makes activities meaningful, how they identify what activities are

meaningful for individual residents, how they create opportunities for participation in them and

any outcomes they perceive in residents because of that participation (Figure 3.6). Focus group


interviews were limited to between 30-60 minutes each and were audio recorded and

transcribed. Demographic information was also collected about participants (Appendix 9).

Figure 3.6. Staff focus group interview schedule

1. What do you think makes activities meaningful to residents?

2. How are these activities different to other types of activities? [prompt: e.g. leisure]

3. What do you think are the most important features of an activity we can offer to

people living with dementia?

4. Can you give me an example of an activity that you think is meaningful to an

individual resident?

5. How would you know if an activity a resident is doing is meaningful to them?

[prompts: What would you look for? What would you need to know about the

resident?]

6. How do you identify activities that an individual resident might find meaningful?

7. What do you think helps residents with dementia to participate in ‘meaningful

activity’? [prompts: resources, resident factors, staff factors etc]

8. What have you seen happen when residents participate in ‘meaningful activity’?

[prompts: What are the outcomes/consequences? What is the impact on their quality

of life?]

3.4.3 Data Analysis

With participant consent, interviews and focus group interviews were audio recorded and

transcribed verbatim for analysis. One focus group interview and eight individual interviews

were transcribed by a transcription service with the remaining three focus group interviews and

28 individual interviews transcribed by the researcher. Following transcription, transcripts

were read while listening to the audio recording to check for accuracy and develop familiarity

with the data. The software program NVivo was used to store, manage and analyse the data

throughout the various coding stages (QSR International Pty Ltd., 2010). Once checked for

accuracy, interview and focus group transcripts were uploaded into NVivo with resident,

family member and staff transcripts stored in separate folders. Initially, the interview and focus

group interview transcripts were read and re-read to develop familiarity with the data and begin

to make sense of the main ideas (Elo & Kyngas, 2008; Liamputtong, 2013). Transcription and


immersion in the data began alongside data collection. This approach allowed for follow-up of

relevant or ambiguous data as data was collected from additional participants and at other study

sites (Liamputtong, 2013), resulting in a deeper understanding of the concepts and issues being

studied (Ezzy, 2013).

Data from the interviews and focus group interviews were analysed using qualitative

content analysis with a deductive approach (Assarroudi, Heshmati Nabavi, Armat, Ebadi, &

Vaismoradi, 2018; Elo & Kyngas, 2008; Hsieh & Shannon, 2005). The purpose of this analysis

approach is to confirm or build upon concepts and theories (Elo & Kyngas, 2008; Hsieh &

Shannon, 2005) and explore their relevance and application in new contexts (Elo & Kyngas,

2008; Humble, 2009). Coding of the data began with a deductive approach, categorising the

data relevant to attributes, antecedents and consequences of ‘meaningful activity’ (Sadler,

2000; Walker & Avant, 2011). Within each of these categories, the data was coded to the

themes that emerged from Phase 1 of this study, the literature-based concept analysis. That is,

the data relevant to the defining attributes of ‘meaningful activity’ was coded under the five

attributes: engaging, enjoyable, suited to the individual, goal-related and linked to identity.

Codes for each of these themes were created under Nodes in NVivo before analysis

commenced. This provided an unconstrained matrix for further analysis of the data (Elo &

Kyngas, 2008). By using an unconstrained matrix for analysis rather than a structured matrix,

data could be coded to subthemes under each of these themes and data that did not fit within

these pre-existing themes could be coded to new themes (Armat, Assarroudi, Rad, Sharifi, &

Heydari, 2018; Assarroudi et al., 2018; Elo & Kyngas, 2008; Hsieh & Shannon, 2005). The

analysis process was iterative with new subthemes developed, subtheme names changed and

subthemes merged as appropriate (Humble, 2009). With this approach, qualitative content

analysis is guided by, but not limited by theory (Armat et al., 2018; Hsieh & Shannon, 2005).

Using this approach to qualitative content analysis, with the literature-based concept analysis

findings forming the framework for analysis, the findings from both phases could be compared.

This provided further clarity of the concept of ‘meaningful activity’ in the specific context of

the lives of RACF residents with dementia.

The analysis focused on the manifest content of the transcripts (Assarroudi et al., 2018).

The purpose was to explore patterns of meaning that were repeated across the data

(Liamputtong, 2013). Consideration was given to the dominant ideas or viewpoints expressed

by participants, views that differed to the predominant view and any gaps identified in the data.


Reflexivity involves continuous awareness and consideration of the researcher’s unique

perspective and biases that may influence the research process, interpretations, findings and

conclusions with the intent of adding credibility and rigour (Dowling, 2006). Reflexivity was

used throughout the data collection and analysis process and steps were taken to enhance the

rigour of the study findings and conclusions. The researcher does not have a clinical

background but has experience undertaking research in the RACF context and with people

living with dementia. The supervisors included researchers with and without clinical

experience caring for people with dementia and in the RACF context and this brought different

perspectives to the research topic. The interview questions were developed in consultation with

the supervisors to ensure that the questions being asked were relevant and appropriate to

address the research questions.

The rigour of the analysis was enhanced using multiple coding. A random selection of

10% of the resident and family interview transcripts and 25% of the focus group interview

transcripts were coded independently by the researcher and a second coder. A coding

comparison query was used to calculate a Kappa coefficient, assessing the level of agreement.

The results of the query provide a coefficient between the values of zero indicating no

agreement between the raters and one indicating complete agreement. A value above 0.60 is

interpreted as satisfactory agreement with a value above 0.80 indicating near perfect agreement

(Burla et al., 2008). The researcher coded all of the interview and focus group interview data.

The analytic process and interpretations of the data were also regularly discussed and

reviewed during supervisory meetings. These meetings were valuable as regular discussion of

the data helped to form interpretations, generate new perspectives and provide a deeper level

of analysis while highlighting personal perspectives and values that may influence

interpretations and analysis (Ezzy, 2013). Appropriate names for the themes and subthemes

and relationships between them were discussed until agreement was reached. Repeatedly

returning to the data throughout this analysis process and discussions helped to ensure that the

themes and subthemes were an accurate interpretation and representation of the data.

Representative quotations were used to illustrate participant voices and connect the data with

the reported findings.


This study was designed to address several gaps in the literature related to ‘meaningful

activity’ for older adults living with dementia in RACFs. As described in this chapter, the study

included a literature-based analysis of ‘meaningful activity’, quantitative secondary analysis of

the AusQoL study data and a qualitative study further refining the concept of ‘meaningful

activity’. The links between these phases and how they address the research questions was

discussed. More specifically, the search strategy and analysis approach for Phase 1 was

described. Details of the study sample, recruitment approaches, data collection methods and

measures used as well as the data analysis process were presented for both Phase 2 and 3. The

findings of each phase of the study will be presented in the following chapters.

Chapter 4: Phase 1 Findings- Literature-based concept analysis 74

Chapter 4: Phase 1 Findings- Literature-based concept analysis

This chapter presents the key findings of Phase 1 of the study, the literature-based

concept analysis of ‘meaningful activity’. As described in Chapter 3, the Walker and Avant

(2011) approach to concept analyses was used to identify how the term ‘meaningful activity’

is currently used and understood in the literature. The current chapter presents a description of

the papers included in the review as well as the defining attributes, antecedents and

consequences of ‘meaningful activity’ drawn from these papers. Lastly, a model of ‘meaningful

activity’ in older adults with dementia based on these findings is proposed. The concept

analysis has been published and this chapter has been adapted from the published paper, which

includes additional details such as the model and additional cases. The paper can be found in

Appendix 1.

4.1 INCLUDED PAPERS

The search strategy described in Chapter 3 resulted in 29 papers being included in this

review (Figure 4.1).


Figure 4.1. PRISMA diagram

Of the 29 papers, 15 were from North America, nine from the UK and Europe and two

were from Australia. The remaining three papers were based on international literature. There

was a focus on older adults in 16 of the papers, with ten of these focusing on older adults with

dementia. These papers were across a range of settings including the community, day respite

centres and RACFs. Other populations that were addressed in the papers include long-term

unemployed adults, refugees, people with serious mental illness, university and high school

students.

The included papers used varying definitions of ‘meaningful activity’. Some definitions

were broad such as “engagement in life” (Kuosa et al., 2015, p2), while others were specific

such as “related to the interests and past roles of the participants” (Mansbach et al., 2017, p2).

Records identified through database searching (n = 2502)

Incl

uded

El

igib

ility

Id

entif

icat

ion

Records after duplicates removed (n = 850)

Abstracts reviewed for eligibility (n = 110)

Records excluded based on abstract review

(n = 78)

Full-text articles assessed for eligibility (n = 32)

Full-text articles excluded (n = 3)

‘Meaningful activity’ not described (n=2)

Thesis with published papers from the study already included (n=1)

Studies included in qualitative synthesis (n = 29)

Records excluded based on title review (n = 740)


It is clear from the papers reviewed that there are a wide range of activities that can be

considered ‘meaningful activities’ including work, exercise, caring for the home and garden

and leisure activities. The ‘meaningful activity’ definition used, and the examples provided in

each paper, are included in Table 4.1 below.

Cha

pter

4: P

hase

1 F

indi

ngs-

Lite

ratu

re-b

ased

con

cept

ana

lysi

s

77

Tabl

e 4.

1. ‘M

eani

ngfu

l act

ivity

’ def

initi

ons a

nd e

xam

ples

from

pap

ers i

nclu

ded

in th

e co

ncep

t ana

lysi

s

Pape

r

‘Mea

ning

ful A

ctiv

ity’ D

efin

ition

‘M

eani

ngfu

l Act

ivity’ E

xam

ples

Ada

ms,

2003

A

nyth

ing

that

is a

n ex

pres

sion

, say

s or s

how

s som

ethi

ng, i

s a

vehi

cle

of m

eani

ng, o

ne m

eans

som

ethi

ng b

y it

Wor

k, h

elpi

ng fr

iend

s/fa

mily

Bal

l & O

rfor

d,

2002

A

ctiv

ities

that

repr

esen

t a c

halle

nge;

requ

ire su

stai

ned

effo

rt an

d co

mm

itmen

t; an

d ar

e va

lued

by

othe

rs

Educ

atio

nal o

r wor

k-lik

e ac

tiviti

es

Bis

hop

& P

urce

ll,

2013

N

o de

finiti

on p

rovi

ded

G

arde

ning

Bry

ant e

t al,

2001

N

o de

finiti

on p

rovi

ded

Educ

atio

n,

read

ing,

so

cial

isin

g,

trave

l, ho

usew

ork,

re

crea

tion,

exe

rcis

e, c

reat

ive

activ

ities

, wor

k C

arle

ss, 2

008

No

defin

ition

pro

vide

d Sp

ort,

exer

cise

C

arle

ss &

D

ougl

as, 2

008

No

defin

ition

pro

vide

d Sp

ort,

exer

cise

Ciro

& S

mith

, 20

15

Act

iviti

es th

at g

ive

one’

s lif

e pu

rpos

e an

d fu

lfil a

goa

l tha

t is

cul

tura

lly o

r per

sona

lly re

leva

nt

Pers

onal

car

e, c

arin

g fo

r yo

ur h

ome,

car

ing

for

othe

rs,

com

mun

ity p

artic

ipat

ion,

soci

al/le

isur

e en

gage

men

t C

onti

et a

l, 20

08

Act

iviti

es th

at ar

e app

ropr

iate

to th

e ind

ivid

ual’s

capa

bilit

ies

and

prov

ide

oppo

rtuni

ties

to

build

in

terp

erso

nal

rela

tions

hips

and

con

tribu

te to

the

envi

ronm

ent

Rec

reat

iona

l act

iviti

es, c

ooki

ng, g

arde

ning

, ani

mal

pla

y

Eakm

an e

t al,

2010

a A

ctiv

ities

that

are

con

grue

nt w

ith o

ne’s

val

ue s

yste

m a

nd

need

s, pr

ovid

e ev

iden

ce o

f co

mpe

tenc

e an

d m

aste

ry a

nd

have

val

ue in

one

’s so

cial

and

cul

tura

l gro

up

Non

e pr

ovid

ed

Eakm

an e

t al,

2010

b A

ctiv

ities

that

mat

ter o

r are

per

sona

lly fu

lfilli

ng

Hom

e m

akin

g, p

erso

nal

finan

ces,

driv

ing,

med

ical

vis

its,

soci

alis

ing,

he

lpin

g ot

hers

, ga

rden

ing,

ex

erci

se,

crea

tive/

mus

ical

ac

tiviti

es,

cultu

ral/r

elig

ious

ac

tiviti

es,

educ

atio

n, re

adin

g, g

ames

, wat

chin

g te

levi

sion

, pet

car

e

Eakm

an, 2

011

Act

iviti

es th

at a

re c

ongr

uent

with

one

’s v

alue

sys

tem

and

ne

eds,

prov

ide

evid

ence

of

com

pete

nce

and

mas

tery

and

ha

ve v

alue

in o

ne’s

soci

al a

nd c

ultu

ral g

roup

Non

e pr

ovid

ed

Cha

pter

4: P

hase

1 F

indi

ngs-

Lite

ratu

re-b

ased

con

cept

ana

lysi

s

78

Pape

r

‘Mea

ning

ful A

ctiv

ity’ D

efin

ition

‘M

eani

ngfu

l Act

ivity’ E

xam

ples

Eakm

an, 2

012

Act

iviti

es th

at a

re c

ongr

uent

with

one

’s v

alue

sys

tem

and

ne

eds,

prov

ide

evid

ence

of

com

pete

nce

and

mas

tery

and

ha

ve v

alue

in o

ne’s

soci

al a

nd c

ultu

ral g

roup

Non

e pr

ovid

ed

Eakm

an, 2

013

No

defin

ition

pro

vide

d

Non

e pr

ovid

ed

Edva

rdss

on e

t al,

2010

N

o de

finiti

on p

rovi

ded

In

divi

dual

ly ta

rget

ed a

ctiv

ities

Gol

dber

g et

al,

2002

A

ctiv

ities

whi

ch fu

lfil a

goa

l or p

urpo

se th

at is

per

sona

lly o

r cu

ltura

lly im

porta

nt

Cre

ativ

e ac

tiviti

es,

wor

k/vo

lunt

eerin

g,

atte

ndin

g he

alth

pr

ogra

ms,

read

ing

Gor

i et a

l, 20

01

Act

iviti

es th

at g

ive

a m

eani

ng to

life

and

con

firm

atio

n to

pe

rson

al i

dent

ity,

rein

forc

ing

the

resi

dual

are

a of

mot

or-

sens

itive

com

pete

nce

Bin

go,

exer

cise

s, si

tting

act

iviti

es e

.g.

read

ing,

mus

ical

ac

tiviti

es,

wat

chin

g te

levi

sion

, ga

mes

, ou

tdoo

r ac

tiviti

es,

mas

sage

, dom

estic

act

iviti

es

Han

et a

l, 20

16

Self-

chos

en a

ctiv

ities

der

ived

from

an

indi

vidu

al’s

inte

rest

s, pr

efer

ence

s, va

lues

, m

otiv

atio

ns,

plea

sure

or

sens

e of

the

im

porta

nce

of p

artic

ipat

ing

in c

erta

in a

ctiv

ities

Wat

chin

g te

levi

sion

, re

adin

g,

soci

alis

ing,

w

ork-

rela

ted

activ

ities

, hou

seho

ld ch

ores

, hel

ping

oth

ers,

cultu

ral/s

pirit

ual

activ

ities

, lei

sure

, exe

rcis

e H

arm

er &

Orr

ell,

2008

N

o de

finiti

on p

rovi

ded

Rem

inis

cenc

e, so

cial

act

iviti

es, m

usic

al a

ctiv

ities

, ind

ivid

ual

activ

ities

(e.g

. rea

ding

) K

uosa

et a

l, 20

15

Enga

gem

ent i

n lif

e Ev

eryd

ay a

ctiv

ities

M

ansb

ach

et a

l, 20

16

Act

iviti

es th

at a

re r

elat

ed to

the

inte

rest

s an

d pa

st r

oles

of

the

parti

cipa

nts

and

mee

t the

bas

ic p

sych

olog

ical

nee

ds o

f id

entit

y an

d be

long

ing

Mem

Pics

- an

act

ivity

pro

gram

des

igne

d to

eng

age

peop

le

with

mem

ory

loss

in fa

mili

ar to

pics

Milt

e et

al,

2016

A

ctiv

ities

ta

ilore

d to

th

e in

divi

dual

’s

inte

rest

s an

d pr

efer

ence

s Ex

erci

se, s

olita

ry a

ctiv

ities

, gar

deni

ng

Mor

ley

et a

l, 20

14

Enjo

yabl

e act

iviti

es th

at en

gage

the

resi

dent

to an

ext

ent t

hat

they

im

prov

e ei

ther

the

ir em

otio

nal

wel

lbei

ng,

cogn

itive

st

atus

, phy

sica

l fun

ctio

n or

redu

ce p

robl

emat

ic b

ehav

iour

s

Wat

chin

g te

levi

sion

, co

gniti

ve s

timul

us t

hera

py,

exer

cise

, ga

mes

, re

min

isce

nce

prog

ram

, an

imal

-ass

iste

d th

erap

y,

mus

ic, s

pirit

ual a

ctiv

ities

, foo

d-or

ient

ed a

ctiv

ities

N

yman

&

Szym

czyn

ska,

20

16

No

defin

ition

pro

vide

d Li

fe

stor

y w

ork,

sp

iritu

al/re

ligio

us

activ

ities

, in

terg

ener

atio

nal a

ctiv

ities

, lei

sure

act

iviti

es

Cha

pter

4: P

hase

1 F

indi

ngs-

Lite

ratu

re-b

ased

con

cept

ana

lysi

s

79

Pape

r

‘Mea

ning

ful A

ctiv

ity’ D

efin

ition

‘M

eani

ngfu

l Act

ivity’ E

xam

ples

Pala

cios

-Cen

a et

al

, 201

6 En

joya

ble

activ

ities

tha

t en

gage

the

res

iden

t to

the

ext

ent

that

they

impr

ove e

ither

thei

r em

otio

nal w

ellb

eing

, cog

nitiv

e st

atus

or t

heir

phys

ical

func

tion

Exer

cise

, cul

tura

l act

iviti

es, w

ork-

rela

ted

activ

ities

, dom

estic

ac

tiviti

es

Phin

ney

et a

l, 20

07

Occ

upat

ions

a p

erso

n pe

rfor

ms

in h

is o

r he

r ev

eryd

ay li

fe

that

are

per

ceiv

ed a

s sig

nific

ant t

o th

e pe

rson

Le

isur

e ac

tiviti

es,

hous

ehol

d ch

ores

, so

cial

inv

olve

men

ts,

wor

k-re

late

d ac

tiviti

es

Rol

and

&

Cha

ppel

l, 20

15

Act

iviti

es t

hat

enab

le a

per

son

to r

emai

n in

volv

ed i

n ev

eryd

ay a

ctiv

ities

and

per

sona

l rel

atio

nshi

ps

Soci

alis

ing,

gam

es, e

xcur

sion

s, re

ligio

us a

ctiv

ities

, exe

rcis

e,

outd

oor a

ctiv

ities

Sm

ith e

t al,

2009

N

o de

finiti

on p

rovi

ded

Rel

axat

ion,

exer

cise

, gam

es, s

ocia

l gro

ups,

life r

ole a

ctiv

ities

(e

.g. t

hera

peut

ic c

ooki

ng)

Ver

nooi

j-Das

sen,

20

07

No

defin

ition

pro

vide

d In

divi

dual

ly b

ased

act

iviti

es

Wes

tbro

ek e

t al,

2010

A

ctiv

ities

th

at

a pe

rson

ha

s a

reas

on

or

mot

ive

for

parti

cipa

ting

in th

em

Cla

ssro

om a

ctiv

ities


4.2 DEFINING ATTRIBUTES

Identifying the defining attributes of a concept is the central finding of a concept analysis

(Walker & Avant, 2011). The defining attributes are the key characteristics that are commonly

associated with the concept and can be used to recognise its occurrence. In a pure example of

the concept, each of the defining attributes will be evident. Based on the review of the 29

included papers, five defining attributes of ‘meaningful activity’ emerged. Activities are made

meaningful by being enjoyable, suited to the individual, goal-related, engaging and an

expression of identity.

4.2.1 Enjoyable

One of the key characteristics of ‘meaningful activity’ is that the activity is enjoyable

(Eakman, 2012, 2013; Eakman et al., 2010a; Kuosa et al., 2015; Vernooij-Dassen, 2007).

People living with dementia and the RACF staff who care for them have reported that they use

enjoyment as a measure of whether an activity is meaningful (Harmer & Orrell, 2008). While

an activity can be enjoyed during participation (Nyman & Szymczynska, 2016; Roland &

Chappell, 2015), enjoyment can also be experienced in anticipation of the activity (Roland &

Chappell, 2015) or through the activity outcome (Bishop & Purcell, 2013). Activities may be

enjoyed because they are a hobby (Bishop & Purcell, 2013), are relaxing (Bishop & Purcell,

2013; Han et al., 2016a) or help someone to connect with their identity (Carless, 2008; Han et

al., 2016a; Milte et al., 2016).

4.2.2 Suited to the individual

To be meaningful, activities need to be suited to the abilities and preferences of the

individual. Being suited to individual abilities can enable participation (Conti et al., 2008). A

person’s ability to participate in an activity facilitates their enjoyment of the activity

(Edvardsson et al., 2010; Han et al., 2016a; Harmer & Orrell, 2008; Phinney et al., 2007) and

can be perceived as a measure of the suitability of the activity (Harmer & Orrell, 2008). On the

other hand, confusion or an inability or reluctance to participate due to declining abilities are

often seen as evidence that an activity is unsuitable or not meaningful for that person (Harmer

& Orrell, 2008; Roland & Chappell, 2015). Activities can be adapted and the required support

provided to people with dementia to enable their continued participation in activities and to


facilitate the ongoing meaning of activities (Harmer & Orrell, 2008; Nyman & Szymczynska,

2016).

Although it is important for activities to be suited to each individual, group activities are

still valuable for some people. Group activities can be meaningful when focused on common

interests and adapted to suit the abilities of individuals within the group (Han et al., 2016a).

Group activities may be preferred by some people and this will likely depend on personality

characteristics such as extraversion (Han et al., 2016a; Palacios-Cena et al., 2016; Roland &

Chappell, 2015; Smith, Kolanowski, Buettner, & Buckwalter, 2009).

4.2.3 Goal-related

‘Meaningful activities’ are related to a personally relevant goal. Meaning can be derived

from an activity when an individual has a reason for participating in it and it allows them to

pursue a goal that is important to them (Eakman, 2013; Eakman et al., 2010b; Goldberg et al.,

2002; Westbroek, Klaassen, Bulte, & Pilot, 2010). A range of goals related to ‘meaningful

activity’ emerged from the literature. Activities could be meaningful through achieving

something tangible such as growing vegetables in a garden (Bishop & Purcell, 2013). For older

adults, participating in purposeful activities that allowed them to contribute to others or assume

responsibility were important (Edvardsson et al., 2010; Han et al., 2016a; Harmer & Orrell,

2008; Kuosa et al., 2015; Palacios-Cena et al., 2016). These types of purposeful activities

included various household chores (Han et al., 2016a; Kuosa et al., 2015; Palacios-Cena et al.,

2016). Activities can also be perceived as meaningful through the belief that participation will

be beneficial for health. For example, running may be perceived as a ‘meaningful activity’ by

people with mental illness as a means of improving fitness and managing their mental illness

(Carless, 2008). This goal of ‘meaningful activity’ was also raised by staff and family carers

of people with dementia (Harmer & Orrell, 2008; Roland & Chappell, 2015). They perceived

meaning in activities that utilised and maintained the functional abilities of the person with

dementia. This goal of activity participation was not raised by older adults themselves in the

papers included in this review.

4.2.4 Engaging

For activities to be meaningful, they need to be engaging (Ball & Orford, 2002). This

means more than being physically present, with participants deeply involved in the activity that


is meaningful (Harmer & Orrell, 2008). In contrast, an activity that is not engaging such as

falling asleep in front of the television is typically not considered meaningful (Morley, Philpot,

Gill, & Berg-Weger, 2014). The literature often links this aspect of ‘meaningful activity’ to the

other attributes. For example, to be engaging, activities also need to be interesting to the person

(Phinney et al., 2007) and suited to their skills and abilities (Milte et al., 2016). In the context

of RACF residents with dementia, family members believe that to be meaningful, activities

should be simple enough that they are achievable but complex enough that they require some

concentration (Milte et al., 2016).

4.2.5 Expression of identity

Activities are thought to be meaningful if they are linked to a person’s identity. The

activity may allow the individual to express themselves (Adams, 2003) or it may reflect their

values (Eakman, 2012; Eakman et al., 2010a, 2010b). This attribute of ‘meaningful activity’

was primarily drawn from literature related to older adults (Bryant, Corbett, & Kutner, 2001;

Eakman, 2012; Eakman et al., 2010a, 2010b) and people with illnesses such as mental illness

(Carless, 2008; Carless & Douglas, 2008) and dementia (Han et al., 2016a; Kuosa et al., 2015;

Mansbach et al., 2017; Phinney et al., 2007; Roland & Chappell, 2015). Withdrawal from an

activity that is meaningful due to illness or inability to participate can result in a loss of identity

which can be restored by reintroducing the activity (Carless, 2008; Carless & Douglas, 2008).

Types of personal identity relevant to activities include interest-related identity such as being

an athletic person (Carless, 2008; Carless & Douglas, 2008) or role-related identity through

occupational roles or roles within the family or community (Mansbach et al., 2017; Roland &

Chappell, 2015). Roles within the family including being a parent, spouse or homemaker are

thought to be particularly important for the meaning of activities for older adults (Bryant et al.,

2001). Group identity can also be related to group activity participation, for example, as a

family (Han et al., 2016a). In the context of dementia, with progressive impairments and

changes in living situation, continued involvement in ‘meaningful activities’ related to identity

can provide a sense of continuity and normality (Kuosa et al., 2015; Phinney et al., 2007;

Roland & Chappell, 2015).


4.3 ANTECEDENTS

A range of antecedents related to the individual and factors that enable their participation

emerged from the literature. With a link to identity an important feature of ‘meaningful

activity’, a sense of role identity and an ability to articulate that identity are antecedents of

participating in ‘meaningful activity’ (Han et al., 2016a; Harmer & Orrell, 2008; Morley et al.,

2014; Phinney et al., 2007). Support from others such as family or staff carers is often required

for people with dementia to identify activities that are suited to individual roles, interests and

values as well as to initiate activity participation (Harmer & Orrell, 2008; Morley et al., 2014;

Roland & Chappell, 2015). Support and adaptation of activities to accommodate physical and

cognitive impairments are also antecedents of ‘meaningful activity’ for many people with

dementia (Ciro & Smith, 2015; Han et al., 2016a; Harmer & Orrell, 2008; Phinney et al., 2007;

Roland & Chappell, 2015; Smith et al., 2009). The familiarity of surroundings, objects and

activities can enable people with dementia to participate in ‘meaningful activities’ (Gori,

Pientini, & Vespa, 2001; Han et al., 2016a; Kuosa et al., 2015; Milte et al., 2016; Phinney et

al., 2007).

People with dementia need adequate opportunities in order to participate in ‘meaningful

activities’. Activity opportunities will vary depending on the desired activity, the support needs

of the person with dementia and their living situation. Factors influencing activity opportunities

include the availability of activities (Harmer & Orrell, 2008; Palacios-Cena et al., 2016;

Phinney et al., 2007) as well as resources such as financial resources (Ciro & Smith, 2015;

Palacios-Cena et al., 2016), transport to attend activities outside of the home (Ciro & Smith,

2015) and adequate staffing for activities taking place in a health or aged care context (Harmer

& Orrell, 2008).

4.4 CONSEQUENCES

The existing ‘meaningful activity’ literature suggests several consequences of

participating in these activities. The focus of the literature is on the ability of participation to

fulfil psychological needs (Eakman, 2013; Goldberg et al., 2002). More specifically,

participating in ‘meaningful activities’ allows participants to express autonomy (Ball & Orford,

2002; Nyman & Szymczynska, 2016; Palacios-Cena et al., 2016) and has the potential to

provide a sense of satisfaction (Han et al., 2016a; Nyman & Szymczynska, 2016), self-efficacy

(Ball & Orford, 2002; Goldberg et al., 2002; Roland & Chappell, 2015) and purpose (Eakman,


2013; Goldberg et al., 2002; Gori et al., 2001; Nyman & Szymczynska, 2016; Palacios-Cena

et al., 2016; Phinney et al., 2007). For people with dementia, activities that are suited to their

abilities have particular value in promoting their self-esteem through achieving something

(Edvardsson et al., 2010). ‘Meaningful activities’ with a social aspect help participants to feel

connected to (Han et al., 2016a) and valued by others (Goldberg et al., 2002; Harmer & Orrell,

2008). Participating in ‘meaningful activities’ was associated with happiness (Ciro & Smith,

2015) and decreased depression and dementia related behaviour changes among people with

dementia (Gori et al., 2001; Phinney et al., 2007; Smith et al., 2009). In addition to emotional

wellbeing, participating in ‘meaningful activity’ was also reported to improve the physical

health of participants (Phinney et al., 2007; Roland & Chappell, 2015). However, there may

also be an increase in falls among older adults who are more active (Palacios-Cena et al., 2016).

As dementia progresses, people with the condition experience declining abilities and

changes to their living situation. In this context, participating in ‘meaningful activity’ provides

a sense of continuity and normality (Edvardsson et al., 2010; Han et al., 2016a; Milte et al.,

2016; Phinney et al., 2007; Roland & Chappell, 2015). These activities can also be something

to look forward to and result in increased participation in activities (Han et al., 2016a; Harmer

& Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015; Smith et al., 2009).

4.5 MODEL OF ‘MEANINGFUL ACTIVITY’ IN OLDER ADULTS WITH DEMENTIA

The findings of the literature-based concept analysis were used to propose a model of

‘meaningful activity’ for older adults with dementia. In Figure 4.2 below, the defining

attributes are displayed in a Venn diagram. A pure example of a ‘meaningful activity’ contains

all the defining attributes, so this is represented by the centre of the diagram where all the

circles intersect. The literature revealed a range of antecedents required for people with

dementia to participate in ‘meaningful activity’ and these are displayed in the first box of the

model. Characteristics of the individual and activity opportunities are mediated by adaptation,

enablement and familiarity. Lastly, the consequences of participating in ‘meaningful activity’,

including increased participation and improved health, are presented at the end of the model.

This concept analysis included a broad range of literature from various settings and

populations, making aspects of this model relevant for both people with and without dementia.

For example, activities that are enjoyable, engaging, suited to the individual, goal-related and


linked to identity are likely to be commonly perceived as meaningful. However, the antecedents

of ‘meaningful activity’ identified in this concept analysis were drawn predominately from the

dementia literature. While included papers concerned with other populations discussed the

attributes and consequences of ‘meaningful activity’, these papers did not refer to the

circumstances or incidents required for participation in ‘meaningful activities’. Therefore, the

model in its entirety applies to older adults with dementia.

Figure 4.2. Model of ‘meaningful activity’ in older adults with dementia

This chapter has presented the key findings of the literature-based concept analysis of

‘meaningful activity’. The next chapter will focus on activity among those living with dementia

in Australian RACFs. The chapter describes the findings of Phase 2 of this study which

Antecedents

Individual Factors

Sense of identity Physical and cognitive

Adaptation Enablement Familiarity

Opportunity Factors

Activity availability Resources

Attributes

Consequences

Increased activity participation

Improved Health

Psychosocial and physical Quality of life


investigated activity and affect among RACF residents with dementia and associations between

these and a range of resident and RACF characteristics.

Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data 87

Chapter 5: Phase 2 Findings- Secondary quantitative analysis of Australian Quality of Life Study data

This chapter reports the findings of Phase 2, the secondary quantitative analysis of the

AusQoL study data. The first section describes the characteristics of the 53 participating

RACFs as well as the demographics, health and care characteristics and dementia related

behaviour changes among the 396 participating residents. Sections 5.1.5 and 5.1.6 describe the

QoL of the participating residents as measured by activity opportunities, participation and

enjoyment as well as positive and negative affect. Section two presents the findings of the

bivariate analyses exploring potential relationships between RACF and resident characteristics

with activity opportunities, participation and enjoyment and resident affect. The results of the

multivariate analyses which further examined these relationships are then reported in section

three of this chapter. The analyses were exploratory, and the wide range of variables included

reflect the multidimensional nature of QoL and the complexity of factors underlying QoL. The

final section of the chapter provides a summary of these findings.

5.1 PARTICIPANT CHARACTERISTICS

This section describes the characteristics of the participating RACFs followed by the

characteristics of the participating residents.

5.1.1 RACF characteristics

Across Australia, 53 RACFs participated in this study. Characteristics of participating

RACFs are presented in Table 5.1. Approximately half of the RACFs were charitable

organisations, located in major cities and large in size. All participating RACFs reported having

volunteers. Almost half of the RACFs had less than 20 staff hours per resident per week and

just over one third had less than one diversional therapy (DT) staff hour per resident per week.


The Environmental Audit Tool (EAT) was used to assess the suitability of the RACF

environment for residents with dementia. The participating RACFs obtained a mean score of

0.56 which equates to obtaining just over half of the available points across the ten subscales

of the EAT. (Table 5.1). Using the Person-Centred Environment and Care Assessment Tool

(PCECAT), the mean score for person-centred care culture and care implementation was 90 of

a maximum possible score of 132.

Table 5.1. Demographic, staffing and environmental characteristics of RACFs (n=53)

Characteristic Mean (SD) n (%)

Organisation type Religious/charitable 23 (43.4)

Private/for-profit 15 (28.3)

Government/community 15 (28.3)

Location Major city 26 (49.1)

Inner regional 16 (30.2)

Outer regional 11 (20.8)

RACF size Small (25-49 beds) 12 (22.6)

Medium (50-74 beds) 14 (26.4)

Large (75+ beds) 27 (50.9)

Volunteers Yes 53 (100.0)

No 0 (0.0)

Staff hours to resident ratio <20 23 (45.1)

20-25 14 (27.5)

>25 14 (27.5)

DT staff hours to resident ratio <1 19 (38.0)

≥1 31 (62.0)

RACF environment EAT 0.56 (0.08)

Skewness=-0.333, n=53

PCECAT 89.75 (17.73)

Skewness=0.354, n=53

A section of the PCECAT collected data specifically about the person-centred approach

to activity programs (Table 5.2). Most RACFs used this approach to activity programs either a

great deal of the time or all the time. In three-quarters of the participating RACFs, a detailed


life history was routinely developed, and these were regularly used when developing individual

activity plans in almost two-thirds of RACFs. In approximately three-quarters of RACFs,

residents routinely had input into their unique activity plans which were regularly reviewed in

conjunction with their care plans and residents were able to participate in recreational activities

that suited their interests and needs.

Table 5.2. Person-centred approach to activity programs

PCECAT item Not at all

n (%)

Sometimes

n (%)

A great deal

n (%)

All the time

n (%)

A detailed life history is developed outlining a person’s interests, preferences, past occupations and achievements.

1 (1.9) 12 (22.6) 19 (35.8) 21 (39.6)

The person’s life history is taken into consideration when developing their unique activity plan.

4 (7.5) 16 (30.2) 12 (22.6) 21 (39.6)

The person has input to developing their unique activity plan at the level of their ability.

4 (7.5) 11 (20.8) 19 (35.8) 19 (35.8)

The person’s activity plan is reviewed in conjunction with their care plan.

0 (0.0) 10 (18.9) 27 (50.9) 15 (28.3)

People are able to participate in recreational and social activities that match their interests and needs.

1 (1.9) 10 (18.9) 21 (39.6) 21 (39.6)

The Policy and Program Information Form (POLIF) collected data about resident

involvement in unpaid duties and activity-related decision making (Table 5.3). Of the 51

RACFs with available data, over half reported that residents were involved in unpaid duties

within the RACF. Decisions related to activities were most commonly made by the staff.

Planning entertainment and new activities were primarily joint decisions involving staff and

residents, but most commonly decided by staff with resident input. In almost half of RACFs,

staff planned welcome and educational activities by themselves. Almost half of the RACFs

reported that making rules about activity attendance was not applicable, suggesting that they

do not have rules about this.


Table 5.3. Resident involvement in decision making

Policy area Staff decide by

themselves

n (%)

Staff decide with

resident input

n (%)

Residents decide with staff input

n (%)

Residents decide by

themselves

n (%)

Not applicable

n (%)

Planning entertainment e.g. movies or parties

1 (1.9) 40 (75.5) 12 (22.6) 0 (0.0) 0 (0.0)

Planning educational activities e.g. courses and lectures

22 (41.5) 17 (32.1) 4 (7.5) 0 (0.0) 10 (18.9)

Planning welcoming or orientation activities

23 (43.4) 22 (41.5) 3 (5.7) 0 (0.0) 5 (9.4)

Deciding what kinds of new activities or programs will occur

0 (0.0) 42 (79.2) 11 (20.8) 0 (0.0) 0 (0.0)

Making rules about attendance at activities

4 (7.5) 12 (22.6) 5 (9.4) 7 (13.2) 25 (47.2)

Using the POLIF, RACF managers reported the frequency at which 13 specified

activities took place in their RACF (Table 5.4). In almost all RACFs, exercises and games took

place once a week or more. Almost all RACFs provided outside entertainment, films, religious

services and arts and crafts at least monthly. Discussion groups and social hour were provided

by approximately two-thirds of RACFs at least weekly. Approximately half of the RACFs

provided social groups at least weekly and parties once or twice a month. Reality orientation

groups, support groups and lectures were less commonly provided with most RACFs rarely

providing these activities. The frequency of activity occurrence in each RACF was summed to

provide an activity occurrence summary score (Lemke & Moos, 1980). Of a maximum possible

score of 26, the mean score from the 53 RACFs was 17.28 (SD=3.48, skewness=-.079).


Table 5.4. Frequency of activities that take place at the RACF

Activity Never/few times a year

n (%)

Once/twice a month

n (%)

Once a week or more

n (%)

Exercises or physical fitness activity

1 (1.9) 1 (1.9) 51 (96.2)

Outside entertainment e.g. pianist

1 (1.9) 18 (34.0) 34 (64.2)

Discussion groups 7 (13.5) 11 (21.2) 34 (65.4)

Reality orientation group 29 (58.0) 3 (6.0) 18 (36.0)

Self-help or mutual support group

42 (85.7) 2 (4.1) 5 (10.2)

Films or movies 2 (3.8) 11 (20.8) 40 (75.5)

Club, social group, singing group

10 (19.6) 16 (31.4) 25 (49.0)

Classes or lectures 40 (81.6) 3 (6.1) 6 (12.2)

Bingo, cards or other games 0 (0.0) 2 (3.8) 51 (96.2)

Parties 14 (27.5) 28 (54.9) 9 (17.6)

Religious services 1 (1.9) 9 (17.0) 43 (81.1)

Social hour e.g. coffee hour 6 (11.3) 10 (18.9) 37 (69.8)

Arts and crafts 2 (3.8) 6 (11.3) 45 (84.9)

5.1.2 Resident demographic characteristics

Of 446 residents who participated in the AusQoL study, data was available for 396

residents for this analysis. Table 5.5 presents the demographic characteristics of these residents.

The residents were between 65 and 105 years of age with over half between 80 and 90 years of

age. Most were female, neither married or in a de facto relationship and preferred to speak

English. Almost none identified as Aboriginal or Torres Strait Islander. Over one-third of the

participating residents lived in a dementia-specific RACF or unit. Approximately half of the

residents had received a dementia diagnosis and lived at the RACF for between one and three

years.


Table 5.5. Resident demographic characteristics (n=396)

Characteristic n (%)

Age (years) <80 54 (13.9)

80-90 226 (58.2)

>90 108 (27.8)

Gender Male 78 (19.8)

Female 315 (80.2)

Marital status Married/de facto 95 (24.5)

Separated/divorced/widowed/single 292 (75.5)

Preferred language English 358 (91.8)

Other 32 (8.2)

Aboriginal or Torres Strait Islander Yes 2 (0.5)

No 387 (99.5)

Care level/type^

Low 59 (15.0)

High 235 (59.8)

Ageing in place 103 (26.2)

Dementia-specific unit 142 (36.1)

Length of stay at the RACF (years) <1 85 (21.7)

1-3 171 (43.7)

>3 135 (34.5)

Time since dementia diagnosis (years) <1 56 (21.2)

1-3 139 (52.7)

>3 69 (26.1) ^categories are not mutually exclusive (data collected from separate questions)

Staff reported activity opportunity data using the Activity and Affect Indicators of

Quality of Life (AAIQOL) measure was incomplete for 50 residents. Analysis showed that

there was a statistically significant difference between these 50 residents and the remaining

396 residents only in terms of their preferred language (Table 5.6). Almost one-quarter of

residents with missing activity opportunity data preferred to speak a language other than

English compared to less than one-tenth of the remaining residents. There were no other

demographic differences between the groups. Data from these 50 residents was removed before

undertaking the analysis.


Table 5.6. Demographic characteristics of residents removed from the dataset due to missing

activity opportunity data (n=50) and difference compared to included residents (n=396)

Variable n (%) Difference

Age (years) <80 9 (20.0) X2 (2) = 1.963

p=0.375 80-90 27 (60.0)

>90 9 (20.0)

Gender Male 5 (11.1) X2 (1) = 2.006

p=0.157 Female 40 (88.9)

Marital status Married/de facto 7 (15.9) X2 (1) = 1.632

p=0.201 Separated/divorced/ widowed/single 37 (84.1)

Preferred language

English 39 (78.0) X2 (1) = 6.985

p=0.008 Other 11 (22.0)

Aboriginal or Torres Strait Islander

Yes 0 (0.0) p=1.000

(Fisher’s exact test)

No 45 (100.0)

Care level/type^ Low 7 (15.6) X2 (1) = 0.009

p=0.923

High 30 (66.7) X2 (1) = 0.797

p=0.372

Ageing in place 7 (15.6) X2 (1) = 2.436

p=0.119

Dementia-specific unit 16 (35.6) X2 (1) = 0.006

p=0.939

Length of stay at the RACF (years)

<1 8 (17.8) X2 (2) = 0.663

p=0.718

1-3 19 (42.2)

>3 18 (40.0)

Time since dementia diagnosis (years)

<1 3 (11.1) X2 (2) = 1.719

p=0.423

1-3 17 (63.0)

>3 7 (25.9) ^categories are not mutually exclusive (data collected from separate questions)

5.1.3 Resident health and care characteristics

Data was also collected about a range of health characteristics of the residents and the

care they received (Table 5.7). Over half of the participating residents had moderate or severe

cognitive impairment as assessed by the Mini-Mental State Examination (MMSE). An

assessment of the nutritional status of participating residents using the Mini Nutritional


Assessment Short Form (MNA-SF) revealed that most were either malnourished or at risk of

malnutrition. Using the Pain Assessment in Advanced Dementia (PAINAD), few residents had

observed pain.

According to the Aged Care Funding Instrument (ACFI), participating residents had a

high level of care needs (Table 5.7). At least three-quarters of residents were classified in the

two highest level of care categories in relation to eating, mobility, personal hygiene, toileting

and continence. Just over two-thirds of participants were classified within the two highest

categories for assistance with medication administration.

Table 5.7. Resident health and care characteristics

Variable n (%)

Cognitive impairment (n=364)

None/Mild 37 (10.2)

Moderate 136 (37.4)

Severe 67 (18.4)

Unable to complete measure 124 (34.1)

Nutritional status (n=391)

Normal 42 (10.7)

At risk of malnutrition 250 (63.9)

Malnourished 99 (25.3)

Observed pain (n=345)

None 284 (82.3)

Mild 46 (13.3)

Moderate/severe 15 (4.3)

ACFI 1 Eating (n=389)

A- Independent in readiness to eat and eating 21 (5.4)

B- Supervision required for readiness to eat and/or eating 79 (20.3)

C- Physical assistance required for readiness to eat or eating 194 (49.9)

D- Physical assistance required for readiness to eat and eating 95 (24.4)

ACFI 2 Mobility (n=389)

A- Independent in transfers and locomotion 20 (5.1)

B- Supervision or physical assistance required for transfers or locomotion

31 (8.0)

C- Supervision required for transfers and locomotion or supervision for one care need and physical assistance for the other care need

163 (41.9)

D- Physical assistance for transfers and locomotion or mechanical lifting equipment required for transfers

175 (45.0)


Variable n (%)

ACFI 3 Personal hygiene (n=387)

A- Independent in dressing, washing and grooming 1 (0.3)

B- Supervision required for dressing, washing or grooming 24 (6.2)

C- Physical assistance required for dressing, washing or grooming

40 (10.3)

D- Physical assistance required for dressing, washing and grooming

322 (83.2)

ACFI 4 Toileting (n=389)

A- Independent in use of toilet and toilet completion 16 (4.1)

B- Supervision required for use of toilet and/or toilet completion

68 (17.5)

C- Physical assistance required for use of toilet or toilet completion

62 (15.9)

D- Physical assistance required for use of toilet and toilet completion

243 (62.5)

ACFI 5 Continence (n=388)

A- No urinary or faecal incontinence or self-manages continence devices

54 (13.9)

B- Incontinent of urine ≤once per day or incontinent of faeces once or twice per week

11 (2.8)

C- 2-3 episodes per day of urinary incontinence or passing of urine during scheduled toileting or 3-4 episodes per week of faecal incontinence or passing faeces during scheduled toileting

28 (7.2)

D- >3 episodes per day urinary incontinence or passing of urine during scheduled toileting or >4 episodes per week of faecal incontinence or passing of faeces during scheduled toileting

295 (76.0)

ACFI 11 Medication (n=390)

A- No medication or self-managed medication 1 (0.3)

B- Application of patches at least weekly, but less frequently than daily or needs assistance for <6 minutes per 24 hour period with daily medications

115 (29.5)

C- Needs assistance for between 6-11 minutes per 24 hour period with daily medications

133 (34.1)

D- Needs >11 minutes of assistance with medication per day or daily administration of subcutaneous, intramuscular or intravenous drug

141 (36.2)

ACFI 12 Complex health care (n=393)

A- No procedures (score of 0) 131 (33.3)

B- score of 1-4 68 (17.3)

C- score of 5-9 151 (38.4)

D- Multiple complex health procedures (score of 10 or more) 43 (10.9)


5.1.4 Dementia related behaviour changes among residents

Data was collected on a range of dementia related behaviour changes based on staff

observations and report. Using the Collateral Source Geriatric Depression Scale (CS-GDS),

depression was common in participating residents with nearly three-quarters assessed as having

depression, including over a quarter with severe depression (Table 5.8). Based on data reported

using the Verbal Behaviour Scale (VBS), half of the residents exhibited some signs of verbal

behaviours. Non-aggressive verbal behaviours were observed in more residents than aggressive

verbal behaviours.

Table 5.8. Dementia related behaviour changes among participating residents (categorical

variables)

Variable n (%)

Staff assessed depression

(n=355)

None 105 (29.6)

Mild 150 (42.3)

Severe 100 (28.2)

Verbal behaviour- overall

(n=368)

None exhibited 184 (50.0)

Some exhibited 184 (50.0)

Verbal behaviour- aggressive

(n=380)



Verbal behaviour- non-aggressive

(n=373)



The mean frequency for overall agitation, reported by staff using the Cohen Mansfield

Agitation Inventory- Long Form (CMAI), was 53 of a possible total of 203 (Table 5.9). The

mean frequency for the agitation subscales was 14 of a possible 42 for physically non-

aggressive behaviour and 12 of a possible 35 for verbally agitated behaviour. The frequency of

aggressive agitated behaviours was skewed with most residents infrequently exhibiting these

behaviours. The median score for aggressive agitated behaviour was 11 of a possible score of

63. Using the Revised Algase Wandering Scale- Long Term Care Version (RAWS-LTC), the

mean intensity of wandering behaviour score for ambulant participating residents was 40 of a

possible total score of 80. Data on the intensity of wandering behaviour was collected from a

smaller sample as it was only measured in ambulant residents.


Table 5.9. Dementia related behaviour changes among participating residents (continuous

variables)

Variable n Median Mean (SD) Min- Max

Skewness

Agitation Overall agitation (/203) 396 47.0 52.7 (21.8) 29- 141 1.309

Aggressive behaviour (/63) 396 11.0 - 9- 51 2.258

Physically non-aggressive behaviour (/42)

396 11.0 13.7 (7.7) 6- 36 0.936

Verbally agitated behaviour (/35)

396 10.0 11.6 (6.8) 5- 33 1.043

Wandering behaviour (/80) 263 36.0 40.6 (12.5) 19- 76 0.789

5.1.5 Resident QoL- Activity opportunities, participation and enjoyment

Using the AAIQOL, staff reported data on opportunities for participation in the 15

specified activities, frequency of activity participation and enjoyment of these activities. The

data is presented in Table 5.10 below in descending order of activity opportunity to facilitate

comparison of percentages. There were eight activities in which more than half of the residents

had the opportunity to participate. These included: 1) getting together with family and friends;

2) listening to radio, tapes or watching TV; 3) being outside, going for walks, enjoying nature;

4) playing games or cards, doing crosswords, puzzles; 5) being with or watching animals; 6)

reading or having stories read to him/her; 7) going for a ride in the car, train or bus; and 8)

exercising, playing or watching sports. Just less than half of the participating residents had the

opportunity to participate in handiworks or craft or attend religious events. Approximately one-

third had the opportunity to go to the movies, museums or entertainment, talk on the telephone

or participate in gardening. The least available activities were completing a difficult task and

going shopping with around one-quarter of residents having the opportunity to participate in

each.

In cases where residents had the opportunity to participate in an activity the frequency of

their participation was also reported. Over three-quarters of the residents who had the

opportunity to listen to radio, tapes or watch television did so more than three times per week.

More than half of the residents who had the opportunity to get together with family or friends

and read or have stories read to him/her did so more than three times per week. There were six

activities that residents were most likely to participate in a few times each week. These

included: 1) being with or watching animals; 2) going for a ride in the car, train or bus; 3) going


to religious events; 4) going to movies, museums, entertainment; 5) completing a difficult task;

and 6) going shopping. There were several activities where many of the residents who had the

opportunity to participate did not do so. More than half of the residents who had the opportunity

to participate in gardening did not do so. Approximately one-third did not participate in games

or cards, craft, going to religious events, completing a difficult task or going shopping.

Almost all activities that were participated in were enjoyed. The most enjoyed activity

was talking to family or friends on the telephone with all residents who participated in this

reportedly enjoying the activity. The activity that was enjoyed the least, by 88% of residents

who participated in it, was completing a difficult task.


Table 5.10. Activity indicators of quality of life (AAIQOL)- Individual items

Activity type Opportunity Participation [n (%)] Enjoyed

n % None Few Often n %

Getting together with family/friends 366 92.4 6 (1.7) 152 (42.0)

204 (56.4)

348 99.1

Listening to radio, tapes or watching TV

336 84.8 11 (3.4) 58 (18.0)

253 (78.6)

296 97.4

Being outside, going for walks, enjoying nature

288 72.7 41 (14.4)

116 (40.7)

128 (44.9)

232 96.7

Playing games or cards, doing crosswords, puzzles

236 59.6 64 (28.6)

68 (30.4)

92 (41.1)

151 96.2

Being with or watching pets or animals

233 58.8 22 (9.5) 143 (61.6)

67 (28.9)

196 94.7

Reading or having stories read to him/her

232 58.6 22 (9.7) 79 (34.8)

126 (55.5)

196 99.5

Going for a ride in the car, train or bus

203 51.3 26 (13.3)

128 (65.3)

42 (21.4)

169 99.4

Exercising, playing or watching sports

202 51.0 32 (15.9)

77 (38.3)

92 (45.8)

159 94.6

Doing handiwork or crafts 194 49.0 72 (38.1)

58 (30.7)

59 (31.2)

114 98.3

Going to church, synagogue, religious events

186 47.0 64 (34.4)

101 (54.3)

21 (11.3)

111 96.5

Going to movies, museums, entertainment

160 40.4 24 (15.1)

91 (57.2)

44 (27.7)

127 95.5

Talking to family/ friends on telephone

144 36.4 26 (18.3)

54 (38.0)

62 (43.7)

115 100.0

Gardening, plant care, indoors or outdoors

120 30.3 61 (52.1)

33 (28.2)

23 (19.7)

55 98.2

Completing a difficult task 109 27.5 40 (37.7)

44 (41.5)

22 (20.8)

57 87.7

Going shopping for groceries, clothes etc.

93 23.5 28 (31.1)

47 (52.2)

15 (16.7)

59 96.7

Total AAIQOL scale scores were calculated (Table 5.11). On average, residents had the

opportunity to participate in half of the specified 15 activities (mean=7.8). The mean scores for

activity participation and enjoyment were 10 out of 30 and six out of 15 respectively.


Table 5.11. Activity indicators of quality of life (AAIQOL)- Scale scores

Scales n Mean (SD) Skewness Min-Max

Opportunity (0-15) 396 7.8 (4.1) 0.085 0-15

Participation (0-30) 387 9.7 (5.4) 0.649 1-26

Enjoyment (0-15) 385 6.2 (3.5) 0.462 0-15

The figures below illustrate the frequency of activity participation in more detail. In

addition to the frequency of participation summary score, the number of activities participated

in of the 15 specified activities was also calculated. On average, residents participated in 6.34

activities (SD=3.46) with over half of the residents participating in between three and seven

activities (Figure 5.1).

Figure 5.1. Number of activities participated in by residents over the previous two weeks (n=394)

Over half of the residents participated in between one and four activities a few times a

week each (Figure 5.2). Staff most commonly reported residents participating in one activity

at this frequency (17% of residents).

1.8

3.8

7.4

9.4

11.712.4

11.7

9.4

4.65.6

6.3

7.6

3.0 2.82.0

.5

0

2

4

6

8

10

12

14

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

Perc

ent o

f res

iden

ts (%

)

Number of activities participated in


Figure 5.2. Proportion of residents who participated in activities between one and three times per week over the previous two weeks (n=396)

Almost two thirds of residents participated in between one and four activities more than

three times a week each (Figure 5.3). Again, staff most commonly reported residents

participating in one activity at this frequency (19% of residents).

Figure 5.3. Proportion of residents who participated in activities more than three times per week over the previous two weeks (n=396)

15.917.4

11.9

14.9

13.1

8.1

6.35.6

3.5

1.8 1.0.5

0

2

4

6

8

10

12

14

16

18

20

0 1 2 3 4 5 6 7 8 9 10 11

Perc

ent o

f res

iden

ts (%

)

Number of activities participated in 1-3 times per week

11.6

18.9 18.7

12.9 13.4

5.87.1

5.3

2.0 2.0 1.3 .8.3

02468

101214161820

0 1 2 3 4 5 6 7 8 9 10 11 13

Perc

ent o

f res

iden

ts(%

)

Number of activities participated in >3 times per week


Staff reported zero activity opportunities in the previous two weeks for seven of the

residents participating in the AusQoL study. These residents were mostly between 80-90 years

of age, female, neither married or in a de facto relationship, preferred to speak English and did

not identify as Aboriginal or Torres Strait Islander (Table 5.12). Most of these residents had

lived with a diagnosis of dementia and at the RACF for more than three years. One resident

was classified as having severe cognitive impairment and four were reported as being unable

to complete the cognitive assessment.


Table 5.12. Characteristics of residents with zero reported activity opportunities (n=7)

Variable n

Age (years) <80 1

80-90 5

>90 1

Gender Male 2

Female 5

Marital status Married/de facto 2

Separated/divorced/widowed/single 5

Preferred language English 7

Other 0


Yes 0

No 7

Care level/type^ Low 0

High 5

Ageing in place 1

Dementia-specific unit 4


<1 1

1-3 2

>3 4

Time since dementia diagnosis (years)

<1 0

1-3 1

>3 3

Cognitive impairment Unable to complete measure 4

Severe 1

Moderate 0

None/Mild 0 ^categories are not mutually exclusive (data collected from separate questions)

5.1.6 Resident QoL- Affect

Using the AAIQOL and based on their observations of residents over the previous two

weeks, staff reported on the residents’ positive and negative affect. Staff reported higher

positive affect in residents than negative affect. The mean positive affect score was 12 and the

mean negative affect score was eight (Table 5.13).


Table 5.13. Affect indicators of quality of life (AAIQOL)- Scale scores


Positive affect (3-15) 388 11.8 (3.1) -0.953 3-15

Negative affect (3-15) 381 8.0 (3.4) 0.361 3-15

5.2 BIVARIATE ANALYSES

This section reports the results of the bivariate analyses. Relationships were explored

between RACF characteristics and resident activity and affect followed by the relationships

between resident demographic, health and care characteristics and resident activity and affect.

5.2.1 RACF characteristics associated with resident activity and affect

Associations between activity opportunities, participation and enjoyment and RACF

characteristics were explored (Table 5.14). There were no statistically significant differences

in measures of resident activity based on organisational type or RACF location. Significant

differences were found for activity opportunity and enjoyment based on RACF size and overall

staff hours to resident ratio. The categories with significantly more activity opportunities and

enjoyment were medium sized RACFs compared to small RACFs; and RACFs with a low ratio

of staff hours to residents compared to those with a medium ratio. Residents in RACFs with a

high ratio of DT staff hours to residents had significantly more opportunities than residents in

RACFs with a low ratio of DT hours to residents. There were no significant differences in

activity participation based on RACF size or the ratio of overall or DT staff hours to residents.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

10

5

Tabl

e 5.

14. R

esid

ent a

ctiv

ity b

y R

AC

F ch

arac

teris

tics

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Org

anis

atio

n ty

pe

F(2,

393

)=0.

852

p=0.

427

F(

2, 3

84)=

0.23

0

p=0.

795

F(

2, 3

82)=

0.66

8

p=0.

513

Rel

igio

us/ c

harit

able

7.

55 (4

.16)

Pr

ivat

e p=

0.74

3

Gov

ernm

ent p

=0.4

05

9.52

(5.4

0)

Priv

ate

p=0.

780

Gov

ernm

ent p

=0.9

80

6.07

(3.5

2 Pr

ivat

e p=

0.56

2

Gov

ernm

ent p

=0.9

97

Priv

ate/

for-

prof

it 7.

90 (4

.12)

G

over

nmen

t p=0

.848

9.

96 (5

.55)

G

over

nmen

t p=0

.905

6.

50 (3

.49)

G

over

nmen

t p=0

.582

Gov

ernm

ent/

com

mun

ity

8.20

(3.8

5)

9.

65 (5

.28)

6.04

(3.4

2)

Loca

tion

F(2,

393

)=1.

284

p=0.

278

F(

2, 3

84)=

0.01

2

p=0.

988

F(

2, 3

82)=

0.16

8

p=0.

846

Maj

or c

ity

7.75

(4.0

2)

Inne

r p=0

.539

Out

er p

=0.7

30

9.73

(5.3

8)

Inne

r p=0

.987

Out

er p

=0.9

97

6.30

(3.6

6)

Inne

r p=0

.911

Out

er p

=0.8

58

Inne

r reg

iona

l 8.

25 (4

.05)

O

uter

p=0

.264

9.

63 (5

.18)

O

uter

p=0

.998

6.

13 (3

.14)

O

uter

p=0

.985

Out

er re

gion

al

7.34

(4.2

0)

9.

68 (5

.87)

6.05

(3.6

1)

RA

CF

size

F(

2, 3

93)=

3.48

9

p=0.

031*

F(

2, 3

84)=

0.97

8

p=0.

377

F(

2, 3

82)=

3.23

4

p=0.

040*

Smal

l (25

-49

beds

) 7.

21 (3

.96)

M

ediu

m p

=0.0

31*

Larg

e p=

0.60

7

9.50

(4.9

7)

Med

ium

p=0

.519

Larg

e p=

1.00

0

5.62

(3.1

7)

Med

ium

p=0

.035

*

Larg

e p=

0.50

9

Med

ium

(50-

74 b

eds)

8.

80 (4

.07)

La

rge

p=0.

088

10.4

2 (5

.45)

La

rge

p=0.

367

6.96

(3.6

5)

Larg

e p=

0.14

0

Larg

e (7

5+ b

eds)

7.

71 (4

.06)

9.48

(5.5

3)

6.

11 (3

.48)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

10

6

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Staf

f hou

rs to

resi

dent

ratio

F(

2, 3

78)=

11.6

22

p<0.

001*

F(

2, 3

70)=

0.85

4

p=0.

426

F(

2, 3

68)=

3.26

1

p=0.

039*

Low

(<20

) 8.

77 (4

.04)

M

ediu

m p

<0.0

01*

Hig

h p=

0.07

7

10.0

5 (5

.46)

M

ediu

m p

=0.4

66

Hig

h p=

0.59

7

6.60

(3.5

7)

Med

ium

p=0

.030

*

Hig

h p=

0.58

0

Med

ium

(20-

25)

6.46

(3.5

4)

Hig

h p=

0.05

9 9.

25 (5

.28)

H

igh

p=0.

984

5.49

(3.1

4)

Hig

h p=

0.35

7

Hig

h (>

25)

7.69

(4.2

3)

9.

38 (5

.65)

6.16

(3.6

8)

DT

staf

f hou

rs to

resi

dent

ratio

t(3

75)=

-1.9

76

p=0.

049*

t(3

67)=

0.19

9

p=0.

842

t(3

65)=

-1.1

61

p=0.

246

Low

(<1)

7.

31 (4

.10)

9.75

(5.6

6)

5.

93 (3

.49)

Hig

h (≥

1)

8.15

(4.0

2)

9.

63 (5

.35)

6.37

(3.5

4)

AN

OVA

(Tuk

ey H

SD) a

nd T

-test

, *st

atis

tical

ly si

gnifi

cant

diff

eren

ce p

<0.

05


EAT and PCECAT scores were not correlated with measures of resident activity (Table

5.15). The overall frequency of organised activities in the RACF, as reported using the POLIF

was significantly negatively correlated with the number of activities participating residents had

the opportunity to participate in.

Table 5.15. Correlations between resident activity and RACF characteristics

RACF characteristics Activity

Opportunity Participation Enjoyment

Environmental Audit Tool mean

0.089, p=0.078

n=396

0.096, p=0.059

n=387

0.072, p=0.161

n=385

Person-centred environment and care

0.059, p=0.245

n=396

-0.009, p=0.856

n=387

-0.016, p=0.748

n=385

POLIF- Activity occurrence -0.111, p=0.027*

n=396

0.018, p=0.720

n=387

-0.072, p=0.158

n=385 Pearson correlation, *statistically significant correlation p<0.05

Several specific questions on the PCECAT were concerned with resident life histories

and activity plans (Table 5.16). Residents had significantly more activity opportunities in

RACFs where the following person-centred practices were reported: resident life histories were

often developed compared to sometimes developing life histories; residents sometimes had

input into developing their unique activity plan compared to always having input; activity plans

were often reviewed in conjunction with care plans rather than always reviewed in conjunction

with care plans; and residents were often able to participate in activities that match their

interests and needs compared to always doing this. No significant differences were found in

the frequency of activity participation for any of these aspects of person-centred care.

Significant differences in activity enjoyment were found in relation to the same aspects of

person-centred practices where differences in activity opportunities were found with enjoyment

in more activities reported for residents in RACFs where: life histories were often developed

compared to sometimes developing life histories; residents often had input into developing

their unique activity plan compared to always having input; activity plans were often reviewed

in conjunction with care plans rather than always reviewed in conjunction with care plans; and

residents were often able to participate in activities that match their interests and needs


compared to always doing this. There were no differences in any of the activity variables based

on the extent to which resident life histories were used when developing activity plans.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

10

9

Tabl

e 5.

16. R

esid

ent a

ctiv

ity b

y R

AC

F ac

tivity

pla

nnin

g

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

A d

etai

led

life

hist

ory

is d

evel

oped

out

linin

g a

pers

on’s

inte

rest

, pre

fere

nces

, pas

t occ

upat

ions

an

d ac

hiev

emen

ts

F(3,

392

)=3.

934

p=0.

009*

F(

3, 3

83)=

2.25

5

p=0.

082

F(

3, 3

81)=

3.87

1

p=0.

010*

Not

at a

ll 8.

75 (3

.40)

So

met

imes

p=0

.741

Gre

at p

=0.9

99

All

p=0.

981

7.00

(2.4

5)

Som

etim

es p

=0.9

34

Gre

at p

=0.6

13

All

p=0.

726

4.75

(0.9

6)

Som

etim

es p

=0.9

84

Gre

at p

=0.6

13

All

p=0.

860

Som

etim

es

6.67

(3.8

9)

Gre

at p

=0.0

05*

All

p=0.

063

8.63

(5.5

7)

Gre

at p

=0.0

84

All

p=0.

323

5.38

(3.3

1)

Gre

at p

=0.0

06*

All

p=0.

356

A g

reat

dea

l 8.

45 (3

.99)

A

ll p=

0.73

0 10

.33

(5.6

3)

All

p=0.

860

6.88

(3.6

8)

All

p=0.

241

All

the

time

7.97

(4.1

5)

9.

83 (5

.05)

6.12

(3.3

2)

A p

erso

n’s l

ife h

isto

ry is

take

n in

to c

onsid

erat

ion

whe

n de

velo

ping

thei

r uni

que

activ

ity p

lan

F(3,

392

)=1.

412

p=0.

239

F(

3, 3

83)=

1.47

9

p=0.

220

F(

3, 3

81)=

1.15

9

p=0.

325

Not

at a

ll 8.

14 (3

.87)

So

met

imes

p=0

.967

Gre

at p

=0.7

75

All

p=0.

998

11.9

5 (6

.76)

So

met

imes

p=0

.214

Gre

at p

=0.1

66

All

p=0.

266

7.36

(3.8

2)

Som

etim

es p

=0.5

49

Gre

at p

=0.4

54

All

p=0.

275

Som

etim

es

7.70

(3.9

2)

Gre

at p

=0.8

08

All

p=0.

196

9.56

(5.4

1)

Gre

at p

=0.9

84

All

p=0.

996

6.31

(3.4

4)

Gre

at p

=0.9

84

All

p=0.

797

A g

reat

dea

l 7.

21 (4

.18)

A

ll p=

0.19

6 9.

29 (5

.56)

A

ll p=

0.94

4 6.

14 (3

.80)

A

ll p=

0.97

1

All

the

time

8.30

(4.1

5)

9.

71 (5

.03)

5.93

(3.2

4)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

0

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

The

pers

on h

as in

put t

o de

velo

ping

thei

r uni

que

activ

ity p

lan

at th

e le

vel o

f the

ir ab

ility

F(

3, 3

92)=

3.73

5

p=0.

011*

F(

3, 3

83)=

0.49

8

p=0.

684

F(

3, 3

81)=

3.12

3

p=0.

026*

Not

at a

ll 6.

97 (3

.42)

So

met

imes

p=0

.164

Gre

at p

=0.3

87

All

p=0.

999

9.55

(4.9

5)

Som

etim

es p

=1.0

00

Gre

at p

=0.9

55

All

p=0.

997

6.00

(3.2

1)

Som

etim

es p

=0.9

76

Gre

at p

=0.6

75

All

p=0.

888

Som

etim

es

8.71

(3.6

8)

Gre

at p

=0.8

07

All

p=0.

023*

9.53

(5.0

8)

Gre

at p

=0.8

74

All

p=0.

994

6.30

(3.2

5)

Gre

at p

=0.7

72

All

p=0.

366

A g

reat

dea

l 8.

21 (4

.29)

A

ll p=

0.08

9 10

.10

(5.8

1)

All

p=0.

645

6.77

(3.7

7)

All

p=0.

014*

All

the

time

7.09

(4.0

4)

9.

34 (5

.24)

5.50

(3.2

1)

The

pers

on’s

act

ivity

pla

n is

revi

ewed

in

conj

unct

ion

with

thei

r car

e pl

an

F(2,

389

)=5.

541

p=0.

004*

F(

2, 3

80)=

1.26

8

p=0.

282

F(

2, 3

78)=

4.03

7

p=0.

018*

Not

at a

ll - (

n=0)

- (n=

0)

- (

n=0)

Som

etim

es

7.65

(3.8

3)

Gre

at p

=0.3

36

All

p=0.

330

9.43

(5.2

9)

Gre

at p

=0.6

09

All

p=0.

920

6.43

(3.4

3)

Gre

at p

=0.9

75

All

p=0.

099

A g

reat

dea

l 8.

40 (4

.14)

A

ll p=

0.00

3*

10.1

1 (5

.63)

A

ll p=

0.29

0 6.

53 (3

.59)

A

ll p=

0.01

6*

All

the

time

6.80

(3.9

6)

9.

11 (5

.04)

5.34

(3.2

0)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

1

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Peop

le a

re a

ble

to p

artic

ipat

e in

recr

eatio

nal a

nd

soci

al a

ctiv

ities

that

mat

ch th

eir i

nter

est a

nd n

eeds

F(

3, 3

92)=

10.5

99

p<0.

001*

F(

3, 3

83)=

1.99

6

p=0.

114

F(

3, 3

81)=

8.90

3

p<0.

001*

Not

at a

ll 6.

11 (2

.98)

So

met

imes

p=0

.494

Gre

at p

=0.1

28

All

p=0.

979

10.8

8 (3

.48)

So

met

imes

p=0

.852

Gre

at p

=0.9

96

All

p=0.

790

6.00

(2.5

6)

Som

etim

es p

=0.9

96

Gre

at p

=0.7

29

All

p=0.

949

Som

etim

es

8.07

(4.2

9)

Gre

at p

=0.2

97

All

p=0.

055

9.26

(5.2

6)

Gre

at p

=0.4

18

All

p=0.

995

5.73

(3.5

5)

Gre

at p

=0.0

09*

All

p=0.

855

A g

reat

dea

l 9.

06 (4

.01)

A

ll p<

0.00

1*

10.4

5 (5

.80)

A

ll p=

0.11

0 7.

27 (3

.64)

A

ll p<

0.00

1*

All

the

time

6.65

(3.7

2)

9.

06 (4

.94)

5.34

(3.0

3)


Resident involvement in unpaid chores in the RACF and aspects of decision making in

five activity-related areas were measured using the POLIF (Table 5.17). There were no

significant differences in activity opportunities, participation or enjoyment based on resident

involvement in unpaid chores. There were significant differences in activity opportunities and

enjoyment based on the extent of resident involvement in all five activity-related areas. In

RACFs where staff planned entertainment with resident input, residents had significantly more

activity opportunities but significantly less enjoyment than residents of RACFs where this was

done by residents with staff input. Activity opportunities, participation and enjoyment were

significantly associated with resident involvement in planning educational activities at the

RACF with these measures higher in RACFs where staff planned these activities compared to

when staff and residents were both involved in the planning. Residents of RACFs where staff

planned welcoming activities with resident input had the greatest number of activity

opportunities, significantly more than all other residents. Residents of RACFs where staff made

these decisions alone had significantly higher activity participation than residents of RACFs

where this was reported as not applicable and enjoyed significantly more activities than all

other residents. Residents in RACFs where staff made decisions about new activities with

resident input had significantly greater opportunities and more enjoyment than those in RACFs

where residents primarily decided. Residents of RACFs where the residents made rules about

activity attendance had the highest activity opportunities, participation and enjoyment.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

3

Tabl

e 5.

17. R

esid

ent a

ctiv

ity b

y re

side

nt in

volv

emen

t in

activ

ity p

lann

ing

Cha

ract

eris

tics

O

ppor

tuni

ty

Part

icip

atio

n En

joym

ent

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Res

iden

t inv

olve

men

t in

unpa

id c

hore

s or d

utie

s t(3

82)=

-1.1

26

p=0.

261

t(3

73)=

0.62

2

p=0.

535

t(3

71)=

0.12

7

p=0.

899

No

7.52

(3.9

1)

9.

97 (5

.47)

6.24

(3.3

5)

Yes

8.

00 (4

.14)

9.61

(5.4

1)

6.

19 (3

.58)

Res

iden

t inv

olve

men

t in

plan

ning

ent

erta

inm

ent

e.g.

mov

ies o

r par

ties

F(2,

393

)=8.

240

p<0.

001*

F(

2, 3

84)=

0.04

3

p=0.

958

F(

2, 3

82)=

4.62

1

p=0.

010*

Staf

f dec

ide

by th

emse

lves

7.

20 (3

.85)

R

esid

ent i

nput

p=0

.642

Staf

f inp

ut p

=0.8

64

10.1

0 (5

.95)

R

esid

ent i

nput

p=

0.97

2

Staf

f inp

ut p

=0.9

58

7.10

(3.8

4)

Res

iden

t inp

ut p

=0.8

43

Staf

f inp

ut p

=0.2

59

Staf

f dec

ide

with

resi

dent

inpu

t 8.

35 (4

.19)

St

aff i

nput

p<0

.001

* 9.

70 (5

.59)

St

aff i

nput

p=0

.985

6.

48 (3

.62)

St

aff i

nput

p=0

.010

*

Res

iden

ts d

ecid

e w

ith st

aff i

nput

6.

52 (3

.44)

9.60

(4.8

4)

5.

30 (2

.87)

Res

iden

ts d

ecid

e by

them

selv

es

- (n=

0)

- (

n=0)

- (n=

0)

Not

app

licab

le

- (n=

0)

- (

n=0)

- (n=

0)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

4

Cha

ract

eris

tics

O

ppor

tuni

ty

Part

icip

atio

n En

joym

ent

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Res

iden

t inv

olve

men

t in

plan

ning

edu

catio

nal

activ

ities

e.g

. cou

rses

and

lect

ures

F(

3, 3

92)=

7.34

7

p<0.

001*

F(

3, 3

83)=

7.55

7

p<0.

001*

F(

3, 3

81)=

11.5

03

p<0.

001*

Staf

f dec

ide

by th

emse

lves

8.

30 (3

.87)

R

esid

ent i

nput

p=0

.152

Staf

f inp

ut p

=0.0

01*

NA

p=0

.670

10.8

8 (5

.47)

R

esid

ent i

nput

p<

0.00

1*

Staf

f inp

ut p

=0.9

79

NA

p=0

.169

7.25

(3.4

5)

Res

iden

t inp

ut p

<0.0

01*

Staf

f inp

ut p

=0.0

08*

NA

p=0

.144

Staf

f dec

ide

with

resi

dent

inpu

t 7.

30 (4

.31)

St

aff i

nput

p=0

.098

NA

p=0

.036

*

7.94

(5.1

0)

Staf

f inp

ut p

=0.0

47*

NA

p=0

.359

4.98

(3.2

9)

Staf

f inp

ut p

=0.9

51

NA

p=0

.097

Res

iden

ts d

ecid

e w

ith st

aff i

nput

5.

63 (2

.91)

N

A p

<0.0

01*

10.5

0 (5

.12)

N

A p

=0.6

72

5.32

(2.6

3)

NA

p=0

.580

Res

iden

ts d

ecid

e by

them

selv

es

- (n=

0)

- (

n=0)

- (n=

0)

Not

app

licab

le

8.95

(4.1

3)

9.

28 (5

.11)

6.19

(3.5

2)

Res

iden

t inv

olve

men

t in

plan

ning

wel

com

ing

or

orie

ntat

ion

activ

ities

F(

3, 3

92)=

9.56

2

p<0.

001*

F(

3, 3

83)=

3.74

0

p=0.

011*

F(

3, 3

81)=

7.93

3

p<0.

001*

Staf

f dec

ide

by th

emse

lves

7.

97 (3

.79)

R

esid

ent i

nput

p=0

.346

Staf

f inp

ut p

=0.0

06*

NA

p=0

.012

*

10.5

4 (5

.57)

R

esid

ent i

nput

p=

0.05

7

Staf

f inp

ut p

=0.9

86

NA

p=0

.030

*

7.03

(3.5

7)

Res

iden

t inp

ut p

=0.0

07*

Staf

f inp

ut p

=0.0

32*

NA

p<0

.001

*

Staf

f dec

ide

with

resi

dent

inpu

t 8.

69 (4

.16)

St

aff i

nput

p<0

.001

*

NA

p<0

.001

*

9.03

(4.9

2)

Staf

f inp

ut p

=0.7

58

NA

p=0

634

5.79

(3.1

9)

Staf

f inp

ut p

=0.7

52

NA

p=0

219

Res

iden

ts d

ecid

e w

ith st

aff i

nput

5.

32 (3

.13)

N

A p

=0.9

39

10.1

5 (5

.63)

N

A p

=0.3

39

5.08

(2.9

0)

NA

p=0

.945

Res

iden

ts d

ecid

e by

them

selv

es

- (n=

0)

- (

n=0)

- (n=

0)

Not

app

licab

le

5.88

(4.2

4)

7.

86 (5

.68)

4.59

(3.5

7)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

5

Cha

ract

eris

tics

O

ppor

tuni

ty

Part

icip

atio

n En

joym

ent

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Res

iden

t inv

olve

men

t in

deci

ding

wha

t kin

ds o

f ne

w a

ctiv

ities

or p

rogr

ams w

ill o

ccur

F(

1, 3

94)=

8.12

5

p=0.

005*

F(

1, 3

85)=

0.04

1

p=0.

839

F(

1, 3

83)=

5.01

2

p=0.

026*

Staf

f dec

ide

by th

emse

lves

- (

n=0)

- (n=

0)

- (

n=0)

Staf

f dec

ide

with

resi

dent

inpu

t 8.

17 (4

.07)

9.72

(5.4

4)

6.

42 (3

.56)

Res

iden

ts d

ecid

e w

ith st

aff i

nput

6.

84 (3

.90)

9.59

(5.3

0)

5.

51 (3

.14)

Res

iden

ts d

ecid

e by

them

selv

es

- (n=

0)

- (

n=0)

- (n=

0)

Not

app

licab

le

- (n=

0)

- (

n=0)

- (n=

0)

Res

iden

t inv

olve

men

t in

mak

ing

rule

s abo

ut

atte

ndan

ce a

t act

iviti

es

F(4,

391

)=9.

694

p<0.

001*

F(

4, 3

82)=

4.48

6

p=0.

001*

F(

4, 3

80)=

6.85

6

p<0.

001*

Staf

f dec

ide

by th

emse

lves

7.

00 (3

.66)

R

esid

ent i

nput

p=0

.998

Staf

f inp

ut p

=0.9

06

Res

iden

ts p

<0.0

01*

NA

p=0

.872

9.04

(4.5

3)

Res

iden

t inp

ut

p=0.

839

Staf

f inp

ut p

=1.0

00

Res

iden

ts p

=0.4

91

NA

p=0

.804

6.00

(2.7

3)

Res

iden

t inp

ut p

=0.5

82

Staf

f inp

ut p

=0.7

70

Res

iden

ts p

=0.6

69

NA

p=0

.844

Staf

f dec

ide

with

resi

dent

inpu

t 7.

28 (4

.61)

St

aff i

nput

p=0

.561

Res

iden

ts p

<0.0

01*

NA

p=0

.868

7.76

(5.0

7)

Staf

f inp

ut p

=0.7

73

Res

iden

ts p

=0.0

05*

NA

p=0

.003

*

4.83

(3.3

1)

Staf

f inp

ut p

=1.0

00

Res

iden

ts p

=0.0

02*

NA

p<0

.001

*

Res

iden

ts d

ecid

e w

ith st

aff i

nput

6.

13 (3

.57)

R

esid

ents

p<0

.001

*

NA

p=0

.119

9.00

(5.0

8)

Res

iden

ts p

=0.3

42

NA

p=0

.652

4.94

(2.9

9)

Res

iden

ts p

=0.0

30*

NA

p=0

.028

*

Res

iden

ts d

ecid

e by

them

selv

es

10.9

1 (3

.17)

N

A p

<0.0

01*

11.2

0 (5

.16)

N

A p

=0.8

45

7.15

(3.2

9)

NA

p=0

.954

Not

app

licab

le

7.78

(3.8

3)

10

.31

(5.5

5)

6.

76 (3

.54)


Using the POLIF, RACF managers also reported on the provision of 13 specified

activities (Table 5.18). There were no significant differences in resident activity opportunities,

participation or enjoyment based on the frequency of exercises, outside entertainment,

discussion groups, religious services or arts and crafts. There were differences in resident

activity based on the frequency of reality orientation groups at the RACF. Residents of RACFs

that rarely ran these groups had the most activity opportunities, most frequent participation and

enjoyed the most activities. Activity opportunities and enjoyment differed depending on the

frequency of support groups, classes and games. Residents of RACFs that rarely ran support

groups and classes had the highest number of activity opportunities and enjoyment. In contrast,

residents of RACFs that ran games at least weekly had significantly more activity opportunities

and enjoyment than residents of RACFs that ran games less frequently. In RACFs that showed

films monthly, residents had significantly fewer activity opportunities, lower participation and

enjoyment than those in RACFs where films were shown weekly. Residents of RACFs where

social groups rarely took place enjoyed significantly more activities than all other residents.

Residents of RACFs that had monthly parties had significantly fewer activity opportunities,

participated in and enjoyed significantly fewer activities than all other residents. Residents of

RACFs with a monthly social hour had significantly more activity opportunities than residents

of RACFs with more frequent social hour.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

7

Tabl

e 5.

18. R

esid

ent a

ctiv

ity b

y R

AC

F ac

tivity

pro

visi

on

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Freq

uenc

y of

exe

rcis

es o

r oth

er p

hysic

al fi

tnes

s ac

tivity

taki

ng p

lace

at t

he R

AC

F F(

2, 3

93)=

1.28

5

p=0.

278

F(

2, 3

84)=

0.59

4

p=0.

552

F(

2, 3

82)=

0.07

7

p=0.

926

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

6.33

(2.3

4)

Mon

thly

p=1

.000

Wee

kly

p=0.

615

10.5

0 (4

.37)

M

onth

ly p

=0.9

58

Wee

kly

p=0 .

918

6.00

(2.5

3)

Mon

thly

p=0

.995

Wee

kly

p=0.

988

Onc

e or

twic

e a

mon

th

6.33

(2.3

1)

Wee

kly

p=0.

386

11.2

5 (3

.91)

W

eekl

y p=

0.56

1 5.

83 (1

.95)

W

eekl

y p=

0.92

8

Onc

e a

wee

k or

mor

e 7.

90 (4

.12)

9.62

(5.4

6)

6.

21 (3

.53)

Freq

uenc

y of

out

side

ente

rtain

men

t e.g

. pia

nist

or

sing

er ta

king

pla

ce a

t the

RA

CF

F(2,

393

)=2.

163

p=0.

116

F(

2, 3

84)=

2.02

3

p=0.

134

F(

2, 3

82)=

0.79

5

p=0.

453

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

11.4

0 (3

.51)

M

onth

ly p

=0.1

01

Wee

kly

p=0.

134

8.20

(4.4

9)

Mon

thly

p=0

.945

Wee

kly

p=0.

717

6.40

(4.1

6)

Mon

thly

p=0

.944

Wee

kly

p=1.

000

Onc

e or

twic

e a

mon

th

7.61

(3.7

0)

Wee

kly

p=0.

799

8.99

(4.8

9)

Wee

kly

p=0.

136

5.89

(3.4

6)

Wee

kly

p=0.

422

Onc

e a

wee

k or

mor

e 7.

88 (4

.24)

10.0

9 (5

.65)

6.36

(3.4

8)

Freq

uenc

y of

dis

cuss

ion

grou

ps ta

king

pla

ce a

t the

R

AC

F F(

2, 3

80)=

2.18

9

p=0.

113

F(

2, 3

71)=

2.65

8

p=0.

071

F(

2, 3

69)=

1.62

1

p=0.

199

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

6.80

(4.1

2)

Mon

thly

p=0

.129

Wee

kly

p=0.

129

8.54

(5.4

3)

Mon

thly

p=0

.841

Wee

kly

p=0.

122

5.84

(4.0

3)

Mon

thly

p=0

.982

Wee

kly

p=0.

500

Onc

e or

twic

e a

mon

th

8.22

(3.9

9)

Wee

kly

p=0.

925

9.09

(4.7

8)

Wee

kly

p=0.

254

5.73

(3.0

3)

Wee

kly

p=0.

243

Onc

e a

wee

k or

mor

e 8.

02 (4

.09)

10.1

9 (5

.61)

6.45

(3.5

2)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

8

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Freq

uenc

y of

real

ity o

rient

atio

n gr

oups

taki

ng

plac

e at

the

RA

CF

F(2,

374

)=4.

501

p=0.

012*

F(

2, 3

65)=

5.70

9

p=0.

004*

F(

2, 3

63)=

6.31

2

p=0.

002*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

8.20

(3.8

4)

Mon

thly

p=0

.099

Wee

kly

p=0.

033*

10.2

7 (5

.40)

M

onth

ly p

=0.0

04*

Wee

kly

p=0.

235

6.62

(3.5

0)

Mon

thly

p=0

.006

*

Wee

kly

p=0.

062

Onc

e or

twic

e a

mon

th

6.33

(4.6

6)

Wee

kly

p=0.

681

6.30

(3.3

4)

Wee

kly

p=0.

048*

4.

11 (3

.18)

W

eekl

y p=

0.11

4

Onc

e a

wee

k or

mor

e 7.

11 (4

.05)

9.31

(5.3

8)

5.

77 (3

.26)

Freq

uenc

y of

self-

help

or m

utua

l sup

port

grou

ps

taki

ng p

lace

at t

he R

AC

F F(

2, 3

67)=

9.52

7

p<0.

001*

F(

2, 3

59)=

0.74

6

p=0.

475

F(

2, 3

57)=

4.29

5

p=0.

014*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

8.15

(3.9

7)

Mon

thly

p=0

.001

*

Wee

kly

p=0.

023*

9.78

(5.3

3)

Mon

thly

p=0

.451

Wee

kly

p=0.

994

6.39

(3.4

6)

Mon

thly

p=0

.017

*

Wee

kly

p=0.

450

Onc

e or

twic

e a

mon

th

4.67

(2.1

1 W

eekl

y p=

0.23

0 8.

22 (3

.80)

W

eekl

y p=

0.52

1 4.

11 (1

.88)

W

eekl

y p=

0.22

8

Onc

e a

wee

k or

mor

e 6.

47 (4

.01)

9.88

(5.9

7)

5.

70 (3

.47)

Freq

uenc

y of

film

s or m

ovie

s tak

ing

plac

e at

the

RA

CF

F(2,

393

)=3.

133

p=0.

045*

F(

2, 3

84)=

7.91

6

p<0.

001*

F(

2, 3

82)=

5.50

5

p=0.

004*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

7.93

(3.1

2)

Mon

thly

p=0

.555

Wee

kly

p=0.

991

9.36

(4.4

8)

Mon

thly

p=0

.396

Wee

kly

p=0.

830

6.64

(2.7

6)

Mon

thly

p=0

.201

Wee

kly

p=0.

976

Onc

e or

twic

e a

mon

th

6.70

(4.4

5)

Wee

kly

p=0.

034*

7.

32 (5

.34)

W

eekl

y p<

0.00

1*

4.91

(3.5

9)

Wee

kly

p=0.

003*

Onc

e a

wee

k or

mor

e 8.

07 (3

.99)

10.2

0 (5

.33)

6.45

(3.4

3)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

11

9

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Freq

uenc

y of

clu

bs, s

ocia

l gro

ups o

r dra

ma

or

sing

ing

grou

ps ta

king

pla

ce a

t the

RA

CF

F(2,

383

)=2.

049

p=0.

130

F(

2, 3

74)=

2.45

6

p=0.

087

F(

2, 3

73)=

6.22

7

p=0.

002*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

8.72

(3.8

6)

Mon

thly

p=0

.136

Wee

kly

p=0 .

165

11.0

0 (5

.62)

M

onth

ly p

=0.0

80

Wee

kly

p=0.

148

7.56

(3.7

3)

Mon

thly

p=0

.003

*

Wee

kly

p=0.

004*

Onc

e or

twic

e a

mon

th

7.53

(4.0

8)

Wee

kly

p=0.

958

9.21

(5.6

1)

Wee

kly

p=0.

857

5.84

(3.5

2)

Wee

kly

p=0.

941

Onc

e a

wee

k or

mor

e 7.

66 (4

.10)

9.54

(5.1

6)

5.

97 (3

.23)

Freq

uenc

y of

cla

sses

or l

ectu

res t

akin

g pl

ace

at

the

RA

CF

F(2,

364

)=14

.101

p<0.

001*

F(

2, 3

56)=

1.01

9

p=0.

362

F(

2, 3

54)=

3.07

4

p=0.

047*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

8.44

(3.9

4)

Mon

thly

p<0

.001

*

Wee

kly

p=0.

001*

9.95

(5.2

7)

Mon

thly

p=0

.478

Wee

kly

p=0.

604

6.46

(3.4

6)

Mon

thly

p=0

.148

Wee

kly

p=0.

163

Onc

e or

twic

e a

mon

th

5.24

(3.6

6)

Wee

kly

p=0.

577

8.71

(5.9

0)

Wee

kly

p=0.

944

5.18

(3.6

3)

Wee

kly

p=0.

939

Onc

e a

wee

k or

mor

e 6.

16 (4

.02)

9.13

(5.6

4)

5.

46 (3

.20)

Freq

uenc

y of

bin

go, c

ards

or o

ther

gam

es ta

king

pl

ace

at th

e R

AC

F F(

1, 3

94)=

10.1

31

p=0.

002*

F(

1, 3

85)=

2.06

2

p=0.

152

F(

1, 3

83)=

6.69

8

p=0.

010*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

- (n=

0)

- (

n=0)

- (n=

0)

Onc

e or

twic

e a

mon

th

5.18

(2.4

4)

8.

00 (4

.72)

4.25

(2.4

3)

Onc

e a

wee

k or

mor

e 7.

99 (4

.09)

9.78

(5.4

3)

6.

30 (3

.50)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

12

0

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Freq

uenc

y of

par

ties t

akin

g pl

ace

at th

e R

AC

F F(

2, 3

74)=

12.5

36

p<0.

001*

F(

2, 3

66)=

9.02

8

p<0.

001*

F(

2, 3

64)=

8.20

6

p<0.

001*

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

9.39

(4.1

3)

Mon

thly

p<0

.001

*

Wee

kly

p=0.

793

10.6

9 (5

.75)

M

onth

ly p

=0.0

18*

Wee

kly

p=0.

342

7.16

(3.6

1)

Mon

thly

p=0

.002

*

Wee

kly

p=0.

995

Onc

e or

twic

e a

mon

th

7.21

(3.7

9)

Wee

kly

p=0.

006*

8.

93 (4

.79)

W

eekl

y p<

0.00

1*

5.73

(3.2

5)

Wee

kly

p=0.

010*

Onc

e a

wee

k or

mor

e 8.

97 (3

.83)

11.9

3 (5

.91)

7.21

(3.4

5)

Freq

uenc

y of

relig

ious

serv

ices

taki

ng p

lace

at t

he

RA

CF

F(2,

393

)=0.

111

p=0.

895

F(

2, 3

84)=

0.61

5

p=0.

541

F(

2, 3

82)=

0.47

3

p=0.

623

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

8.75

(3.4

0)

Mon

thly

p=0

.911

Wee

kly

p=0.

891

7.00

(2.4

5)

Mon

thly

p=0

.664

Wee

kly

p=0.

565

4.75

(0.9

6)

Mon

thly

p=0

.624

Wee

kly

p=0.

696

Onc

e or

twic

e a

mon

th

7.89

(4.0

0)

Wee

kly

p=0.

990

9.41

(5.4

0)

Wee

kly

p=0.

880

6.42

(3.6

6)

Wee

kly

p=0.

871

Onc

e a

wee

k or

mor

e 7.

81 (4

.10)

9.77

(5.4

3)

6.

17 (3

.46)

Freq

uenc

y of

soci

al h

our e

.g. c

offe

e or

coc

ktai

l ho

ur ta

king

pla

ce a

t the

RA

CF

F(2,

393

)=7.

140

p=0.

001*

F(

2, 3

84)=

0.68

6

p=0.

504

F(

2, 3

82)=

2.92

1

p=0.

055

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

7.97

(4.4

8)

Mon

thly

p=0

.188

Wee

kly

p=0.

681

10.5

4 (5

.95)

M

onth

ly p

=0.8

18

Wee

kly

p=0.

507

7.00

(4.1

5)

Mon

thly

p=0

.940

Wee

kly

p=0.

165

Onc

e or

twic

e a

mon

th

9.36

(4.1

1)

Wee

kly

p=0.

001*

9.

89 (5

.03)

W

eekl

y p=

0.84

9 6.

77 (3

.40)

W

eekl

y p=

0.14

9

Onc

e a

wee

k or

mor

e 7.

40 (3

.91)

9.51

(5.4

3)

5.

92 (3

.37)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

12

1

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Freq

uenc

y of

arts

and

cra

fts ta

king

pla

ce a

t the

R

AC

F F(

2, 3

93)=

0.30

4

p=0.

738

F(

2, 3

84)=

1.20

1

p=0.

302

F(

2, 3

82)=

0.35

8

p=0.

699

Nev

er/ o

nly

a fe

w ti

mes

a y

ear

7.33

(2.9

7)

Mon

thly

p=0

.749

Wee

kly

p=0.

897

11.4

0 (4

.50)

M

onth

ly p

=0.2

73

Wee

kly

p=0.

461

6.20

(2.4

6)

Mon

thly

p=0

.909

Wee

kly

p=0.

998

Onc

e or

twic

e a

mon

th

8.23

(3.9

7)

Wee

kly

p=0.

814

8.87

(4.8

9)

Wee

kly

p=0.

633

6.64

(3.5

7)

Wee

kly

p=0.

674

Onc

e a

wee

k or

mor

e 7.

81 (4

.12)

9.71

(5.4

9)

6.

14 (3

.51)

ANO

VA (T

ukey

HSD

) and

T-te

st, *

stat

istic

ally

sign

ifica

nt d

iffer

ence

p<

0.05


Associations between RACF characteristics and resident affect were also explored (Table

5.19). There were no significant differences in resident affect based on organisation type,

RACF location or size. The ratio of overall staff hours for each resident was significantly

associated with positive affect with residents of RACFs with a low number of staff hours per

resident having the highest positive affect. DT staff hours to resident ratio was not associated

with affect.


Table 5.19. Resident affect by RACF characteristics

Characteristics Positive affect Negative affect

Mean (SD) Difference Mean (SD) Difference

Organisation type F(2, 385)=1.073

p=0.343

F(2, 378)=0.617

p=0.540

Religious/ charitable 11.61 (3.31) Private p=0.380

Government p=1.000

8.10 (3.47) Private p=0.936

Government p=0.691

Private/ for-profit 12.10 (2.70) Government p=0.443

8.24 (3.49) Government p=0.525

Government/ community

11.60 (3.03) 7.75 (3.20)

Location F(2, 385)=0.464

p=0.629

F(2, 378)=2.685

p=0.069

Major city 11.63 (3.20) Inner p=0.602

Outer p=0.964

8.03 (3.29) Inner p=0.577

Outer p=0.236

Inner regional 11.97 (2.91) Outer p=0.861 7.64 (3.35) Outer p=0.055

Outer regional 11.74 (2.95) 8.79 (3.67)

RACF size F(2, 385)=1.277

p=0.280

F(2, 378)=2.052

p=0.130

Small (25-49 beds) 11.30 (3.55) Medium p=0.288

Large p=0.378

8.59 (3.51) Medium p=0.107

Large p=0.445

Medium (50-74 beds) 12.02 (2.64) Large p=0.875 7.51 (3.57) Large p=0.432

Large (75+ beds) 11.83 (3.00) 8.05 (3.28)

Staff hours to resident ratio F(2, 370)=4.044

p=0.018*

F(2, 363)=0.747

p=0.475

Low (<20) 12.23 (2.74) Medium p=0.048*

High p=0.049*

7.88 (3.37) Medium p=0.441

High p=0.869

Medium (20-25) 11.34 (3.20) High p=0.999 8.40 (3.72) High p=0.815

High (>25) 11.32 (3.27) 8.11 (3.04)

DT staff hours to resident ratio t(367)=0.172

p=0.863

t(360)=0.341

p=0.734

Low (<1) 11.76 (2.91) 8.12 (3.29)

High (≥1) 11.70 (3.17) 8.00 (3.44) ANOVA (Tukey HSD) and T-test, *statistically significant difference p<0.05


Person-centredness and the overall frequency of activities in the RACF, as reported using

the POLIF, were negatively associated with positive affect but not associated with negative

affect (Table 5.20). There was no correlation between EAT score and resident affect.

Table 5.20. Correlations between resident affect and RACF characteristics

RACF characteristics Affect

Positive affect Negative affect

Environmental Audit Tool mean 0.054, p=0.287

n=388

0.006, p=0.900

n=381

Person-centred environment and care

-0.123, p=0.015*

n=388

-0.068, p=0.182

n=391

POLIF- Activity occurrence -0.132, p=0.009*

n=388

0.064, p=0.211

n=381

Pearson correlation, *statistically significant correlation p<0.05

There was a significant difference in positive affect based on the extent to which a

resident’s life history was used when developing their activity plan (Table 5.21). Residents of

RACFs where this was never done had significantly higher positive affect than residents of

RACFs where life histories were often taken into account. There were no other significant

differences in resident affect related to person-centred approaches to activity programs.


Table 5.21. Resident affect by RACF activity planning



A detailed life history is developed outlining a person’s interest, preferences, past occupations and achievements

F(3, 384)=1.055

p=0.368

F(3, 377)=2.177

p=0.090

Not at all 12.00 (2.16) Sometimes p=0.994

Great p=1.000

All p=0.990

12.25 (2.75)

Sometimes p=0.087

Great p=0.061

All p=0.061

Sometimes 11.59 (3.00) Great p=0.562

All p=0.999

8.18 (3.66) Great p=0.960

All p=0.960

A great deal 12.12 (2.60) All p=0.345 7.95 (3.31) All p=1.000

All the time 11.53 (3.47) 7.95 (3.29)

A person’s life history is taken into consideration when developing their unique activity plan

F(3, 384)=3.552

p=0.015*

F(3, 377)=0.705

p=0.550


Great p=0.021*

All p=0.235

8.10 (4.58) Sometimes p=0.998

Great p=0.996

All p=0.966


All p=0.925

8.24 (3.43) Great p=0.999

All p=0.595


All the time 11.78 (3.22) 7.72 (3.33)

The person has input to developing their unique activity plan at the level of their ability

F(3, 384)=0.679

p=0.565

F(3, 377)=0.760

p=0.517


Great p=0.984

All p=0.948

7.43 (3.57) Sometimes p=0.628

Great p=0.654

All p=0.931


All p=0.523

8.31 (3.41) Great p=0.998

All p=0.778


All the time 11.57 (3.51) 7.85 (3.44)




The person’s activity plan is reviewed in conjunction with their care plan

F(2, 381)=2.567

p=0.078

F(2, 374)=1.372

p=0.255

Not at all - (n=0) - (n=0)


All p=0.325

8.38 (3.27) Great p=0.793

All p=0.254


All the time 11.18 (3.53) 7.57 (3.25)

People are able to participate in recreational and social activities that match their interest and needs

F(3, 384)=1.872

p=0.134

F(3, 377)=0.177

p=0.912


Great p=0.918

All p=1.000

7.33 (3.84) Sometimes p=0.898

Great p=0.919

All p=0.939


All p=0.198

8.18 (3.49) Great p=0.997

All p=0.986


All the time 11.35 (3.46) 8.01 (3.58)

There were no significant differences in resident affect related to whether or not residents

were involved in unpaid chores (Table 5.22). There were no significant differences in negative

affect but some significant differences in positive affect based on the extent of resident

involvement in activity-related planning (Table 5.22). Residents of RACFs where staff planned

educational activities by themselves had significantly higher positive affect than those in

RACFs where staff decided with resident input. Residents of RACFs where staff planned

orientation activities by themselves had significantly higher positive affect than those in

RACFs where these activities were reported as not applicable. In RACFs where making activity

attendance rules was not seen as applicable, residents had significantly higher positive affect

than where staff made these rules with resident input.


Table 5.22. Resident affect by resident involvement in activity planning


Mean (SD)

Difference Mean (SD)

Difference

Resident involvement in unpaid chores or duties

t(374)=-1.910

p=0.057

t(367)=1.283

p=0.200

No 11.37 (3.20)

8.30 (3.49)

Yes 11.99 (2.97)

7.84 (3.33)

Resident involvement in planning entertainment e.g. movies or parties

F(2, 385)=0.867

p=0.421

F(2, 378)=0.012

p=0.988

Staff decide by themselves 12.30 (2.16)

Resident input p=0.896

Staff input p=0.674

8.22 (3.11)


Staff input p=0.987

Staff decide with resident input

11.86 (2.89)

Staff input p=0.460 8.05 (3.27)

Staff input p=1.000


11.44 (3.52)

8.04 (3.76)

Residents decide by themselves

- (n=0) - (n=0)

Not applicable - (n=0) - (n=0)

Resident involvement in planning educational activities e.g. courses and lectures

F(3, 384)=3.733

p=0.011*

F(3, 377)=0.394

p=0.758


Resident input p=0.007*

Staff input p=0.419

NA p=0.404

7.97 (3.45)


Staff input p=0.961

NA p=0.999


11.13 (3.14)

Staff input p=0.908

NA p=0.727

8.30 (3.06)

Staff input p=0.752

NA p=0.966


11.50 (3.82)

NA p=0.997 7.68 (3.61)

NA p=0.949


- (n=0) - (n=0)

Not applicable 11.62 (3.22)

8.05 (3.74)



Mean (SD)


Difference

Resident involvement in planning welcoming or orientation activities

F(3, 384)=4.274

p=0.006*

F(3, 377)=0.895

p=0.444



Staff input p=0.140

NA p=0.009*

7.94 (3.25)


Staff input p=0.989

NA p=0.420


11.78 (3.04)

Staff input p=0.453

NA p=0.085

8.03 (3.45)

Staff input p=0.970

NA p=0.533


10.86 (4.04)

NA p=0.963 7.71 (3.77)

NA p=0.528


- (n=0) - (n=0)


8.85 (3.61)

Resident involvement in deciding what kinds of new activities or programs will occur

F(1, 386)=0.018

p=0.893

F(1, 379)=0.271

p=0.603

Staff decide by themselves - (n=0) - (n=0)


11.77 (2.94)

8.00 (3.27)


11.72 (3.39)

8.20 (3.75)


- (n=0) - (n=0)

Not applicable - (n=0) - (n=0)



Mean (SD)


Difference

Resident involvement in making rules about attendance at activities

F(4, 383)=3.656

p=0.006*

F(4, 376)=1.290

p=0.273



Staff input p=1.000

Residents p=0.248

NA p=0.296

6.88 (3.14)


Staff input p=0.833

Residents p=0.903

NA p=0.275


10.99 (3.58)

Staff input p=1.000

Residents p=0.076

NA p=0.034*

8.21 (3.05)

Staff input p=0.971

Residents p=0.889

NA p=1.000


11.08 (3.82)

Residents p=0.244

NA p=0.269

7.79 (3.67)

Residents p=0.999

NA p=0.920


12.43 (2.23)

NA p=0.977 7.62 (3.08)

NA p=0.756


8.29 (3.56)

Associations between the frequency of 13 specified activities, reported using the POLIF,

and resident affect were also explored (Table 5.23). Resident affect did not differ based on the

frequency at which the following activities took place in the RACFs: exercises, outside

entertainment, discussion or social groups, bingo or cards, parties and arts or crafts. Positive

affect was significantly different based on the frequency of reality orientation groups. Residents

of RACFs where these groups rarely took place had significantly higher positive affect than all

other residents and significantly lower negative affect than those in RACFs where reality

orientation groups took place at least weekly. Residents of RACFs where support groups or

classes rarely took place had significantly higher positive affect than residents of RACFs where

these were monthly activities. The frequency of showing films in the RACF was associated

with positive affect. Where this was done at least weekly, residents had significantly higher

positive affect than residents where films were shown monthly. Positive affect also differed

based on the frequency of social groups and lectures. There were no differences in negative

affect based on the frequency of these activities. Negative affect differed significantly based

on the frequency of religious services with residents of RACFs that rarely held these having


significantly higher negative affect than residents where religious services were held more

frequently.

Table 5.23. Resident affect by RACF activity provision


Mean (SD)


Difference

Frequency of exercises or other physical fitness activity taking place at the RACF

F(2, 385)=1.706

p=0.183

F(2, 378)=0.328

p=0.720

Never/ only a few times a year

13.17 (2.23)

Monthly p=0.993

Weekly p=0.472

7.17 (2.23)

Monthly p=0.968

Weekly p=0.792

Once or twice a month 13.00 (2.86)

Weekly p=0.314 7.58 (3.37)

Weekly p=0.873

Once a week or more 11.70 (3.07)

8.08 (3.42)

Frequency of outside entertainment e.g. pianist or singer taking place at the RACF

F(2, 385)=0.668

p=0.513

F(2, 378)=0.290

p=0.748


12.20 (2.49)

Monthly p=0.988

Weekly p=0.910

9.20 (4.76)

Monthly p=0.729

Weekly p=0.732


Weekly p=0.509 8.02 (3.26)

Weekly p=0.999


8.04 (3.45)

Frequency of discussion groups taking place at the RACF

F(2, 373)=2.582

p=0.077

F(2, 366)=0.229

p=0.795


10.92 (2.57)

Monthly p=0.061

Weekly p=0.201

8.06 (2.85)

Monthly p=0.896

Weekly p=0.999


Weekly p=0.505 7.79 (3.25)

Weekly p=0.782


8.08 (3.51)



Mean (SD)


Difference

Frequency of reality orientation groups taking place at the RACF

F(2, 366)=8.875

p<0.001*

F(2, 359)=3.293

p=0.038*


12.18 (2.92)

Monthly p=0.001*

Weekly p=0.023*

7.71 (3.34)

Monthly p=0.946

Weekly p=0.029*


Weekly p=0.048* 7.95 (3.43)

Weekly p=0.637


8.68 (3.49)

Frequency of self-help or mutual support groups taking place at the RACF

F(2, 360)=5.527

p=0.004*

F(2, 353)=0.027

p=0.973


12.03 (2.79)

Monthly p=0.015*

Weekly p=0.109

7.97 (3.33)

Monthly p=0.971

Weekly p=1.000


Weekly p=0.424 7.78 (3.75)

Weekly p=0.976


7.98 (3.37)

Frequency of films or movies taking place at the RACF

F(2, 385)=3.368

p=0.035*

F(2, 378)=0.679

p=0.508


10.93 (2.37)

Monthly p=0.998

Weekly p=0.426

7.50 (2.79)

Monthly p=0.609

Weekly p=0.858


Weekly p=0.047* 8.45 (3.07)

Weekly p=0.584


7.99 (3.49)

Frequency of clubs, social groups or drama or singing groups taking place at the RACF

F(2, 375)=3.029

p=0.050

F(2, 368)=0.099

p=0.906


12.51 (2.54)

Monthly p=0.480

Weekly p=0.050

8.17 (3.14)

Monthly p=0.947

Weekly p=1.000


Weekly p=0.331 8.01 (3.31)

Weekly p=0.906


8.18 (3.56)



Mean (SD)


Difference

Frequency of classes or lectures taking place at the RACF

F(2, 358)=7.631

p=0.001*

F(2, 351)=0.712

p=0.491


12.15 (2.69)

Monthly p=0.002*

Weekly p=0.060

7.91 (3.38)

Monthly p=0.492

Weekly p=0.972


Weekly p=0.375 8.66 (3.00)

Weekly p=0.519


7.79 (3.42)

Frequency of bingo, cards or other games taking place at the RACF

F(1, 386)=0.027

p=0.871

F(1, 379)=1.524

p=0.218


- (n=0) - (n=0)


7.18 (3.35)


8.10 (3.40)

Frequency of parties taking place at the RACF

F(2, 367)=2.422

p=0.090

F(2, 360)=2.392

p=0.093


12.41 (2.82)

Monthly p=0.291

Weekly p=0.081

7.29 (3.15)

Monthly p=0.079

Weekly p=0.354


Weekly p=0.467 8.19 (3.38)

Weekly p=0.969


8.07 (3.56)

Frequency of religious services taking place at the RACF

F(2, 385)=0.508

p=0.602

F(2, 378)=3.122

p=0.045*


12.00 (2.16)

Monthly p=0.924

Weekly p=0.993

12.25 (2.75)

Monthly p=0.043*

Weekly p=0.034*


Weekly p=0.580 8.03 (3.19)

Weekly p=0.997


8.00 (3.42)



Mean (SD)


Difference

Frequency of social hour e.g. coffee or cocktail hour taking place at the RACF

F(2, 385)=0.679

p=0.508

F(2, 378)=3.065

p=0.048*


12.24 (2.67)

Monthly p=0.839

Weekly p=0.520

7.63 (2.91)

Monthly p=0.857

Weekly p=0.470


Weekly p=0.831 7.27 (3.01)

Weekly p=0.051


8.32 (3.53)

Frequency of arts and crafts taking place at the RACF

F(2, 385)=2.438

p=0.089

F(2, 378)=0.011

p=0.989


13.13 (2.70)

Monthly p=0.646

Weekly p=0.151

8.07 (3.43)

Monthly p=0.996

Weekly p=1.000


Weekly p=0.393 7.97 (3.31)

Weekly p=0.989


8.06 (3.42)

ANOVA (Tukey HSD) and T-test, *statistically significant difference p<0.05

5.2.2 Resident characteristics associated with resident activity and affect

Differences in activity opportunities, participation and enjoyment were assessed based

on a range of demographic, health and care characteristics of the residents (Table 5.24). While

there were no differences in activity opportunities or participation based on the gender of

residents, female residents enjoyed significantly more activities than male residents.

Significant differences in all measures of activity were found based on marital status and

preferred language. Residents who were married or in a de facto relationship had fewer activity

opportunities, less frequent activity participation and less enjoyment compared to residents

who were not. On average, residents whose preferred language was English had the opportunity

to participate in almost two additional activities than residents who preferred another language.

Residents who preferred English also had a greater frequency of activity participation and

enjoyed more activities. Residing in low care was only associated with activity opportunities

with residents in low care having significantly more activity opportunities than other residents.

More activity opportunities and greater activity participation and enjoyment was associated

with ageing in place and not residing in high care. Residents in dementia-specific areas had

significantly fewer activity opportunities than residents not in dementia-specific areas. No


differences were found in activity participation or enjoyment based on whether residents lived

in dementia-specific areas or not.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

13

5

Tabl

e 5.

24. R

esid

ent a

ctiv

ity b

y re

side

nt d

emog

raph

ic c

hara

cter

istic

s

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

En

joym

ent

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Age

(yea

rs)

F(2,

385

)=2.

017

p=0.

134

F(

2, 3

76)=

0.46

7

p=0.

627

F(

2, 3

74)=

0.40

4

p=0.

668

<80

7.80

(4.3

8)

80-9

0 p=

0.77

3

>90

p=0.

715

9.94

(6.0

2)

80-9

0 p=

0.99

8

>90

p=0.

767

6.15

(3.7

2)

80-9

0 p=

0.90

9

>90

p=0.

969

80-9

0 8.

22 (3

.93)

>9

0 p=

0.11

4 9.

90 (5

.08)

>9

0 p=

0.62

8 6.

37 (3

.40)

>9

0 p=

0.65

6

>90

7.27

(4.1

4)

9.

31 (5

.74)

6.01

(3.5

5)

Gen

der

t(391

)=-0

.202

p=0.

840

t(3

82)=

-1.4

55

p=0.

146

t(3

80)=

-2.1

87

p=0.

029*

Mal

e 7.

78 (4

.28)

8.92

(5.0

8)

5.

45 (3

.21)

Fem

ale

7.89

(4.0

1)

9.

93 (5

.46)

6.42

(3.5

1)

Mar

ital s

tatu

s t(3

85)=

-2.2

68

p=0.

024*

t(3

76)=

-2.5

81

p=0.

010*

t(3

74)=

-3.0

17

p=0.

003*

Mar

ried/

de fa

cto

7.02

(4.2

0)

8.

48 (5

.20)

5.28

(3.4

4)

Sepa

rate

d/di

vorc

ed/

wid

owed

/sin

gle

8.11

(4.0

0)

10

.14

(5.4

4)

6.

53 (3

.47)

Pref

erre

d la

ngua

ge

t(388

)=2.

426

p=0.

016*

t(3

79)=

2.56

6

p=0.

011*

t(3

77)=

2.16

6

p=0.

031*

Engl

ish

8.

02 (4

.02)

9.98

(5.3

5)

6.

37 (3

.41)

Oth

er

6.22

(4.1

5)

7.

44 (5

.46)

4.97

(3.8

6)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

13

6

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

En

joym

ent

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Low

car

e t(3

91)=

3.27

6

p=0.

001*

t(3

82)=

1.55

7

p=0.

120

t(3

80)=

1.23

7

p=0.

217

Yes

9.

44 (4

.09)

10.7

4 (5

.40)

6.74

(3.4

5)

No

7.59

(3.9

9)

9.

55 (5

.38)

6.13

(3.4

7)

Hig

h ca

re

t(391

)=-2

.900

p=0.

004*

t(3

82)=

-3.6

71

p<0.

001*

t(3

80)=

-3.9

95

p<0.

001*

Yes

7.

38 (4

.05)

8.91

(5.1

4)

5.

65 (3

.33)

No

8.58

(3.9

7)

10

.94

(5.5

5)

7.

06 (3

.51)

Age

ing

in p

lace

t(3

91)=

3.79

2

p<0.

001*

t(3

82)=

2.63

0

p=0.

009*

t(1

61)=

3.98

4#

p<0.

001*

Yes

9.

15 (4

.26)

10.9

2 (5

.42)

7.44

(3.7

2)

No

7.41

(3.8

9)

9.

29 (5

.33)

5.78

(3.2

7)

Dem

entia

-spe

cific

uni

t t(3

14)=

-3.3

23#

p=0.

001*

t(3

82)=

0.22

1

p=0.

825

t(3

80)=

-0.4

39

p=0.

661

Yes

6.

99 (3

.79)

9.81

(5.3

6)

6.

12 (3

.37)

No

8.36

(4.1

3)

9.

68 (5

.43)

6.28

(3.5

3)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

13

7

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

En

joym

ent

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Leng

th o

f sta

y at

the

RA

CF

(yea

rs)

F(2,

388

)=4.

355

p=0.

013*

F(

2, 3

79)=

9.65

7

p<0.

001*

F(

2, 3

77)=

8.35

6

p<0.

001*

<1

8.55

(3.6

7)

1-3

p=0.

725

>3 p

=0.0

21*

11.7

0 (5

.65)

1-

3 p=

0.01

8*

>3 p

<0.0

01*

7.37

(3.4

0)

1-3

p=0.

049*

>3 p

<0.0

01*

1-3

8.15

(4.1

4)

>3 p

=0.0

52

9.77

(5.3

3)

>3 p

=0.0

85

6.29

(3.4

6)

>3 p

=0.0

78

>3

7.07

(4.0

4)

8.

46 (4

.97)

5.43

(3.3

4)

Tim

e si

nce

dem

entia

dia

gnos

is (y

ears

) F(

2, 2

61)=

5.73

2

p=0.

004*

F(

2, 2

56)=

3.13

3

p=0.

045*

F(

2, 2

56)=

4.75

4

p=0.

009*

<1

9.11

(3.9

0)

1-3

p=0.

183

>3 p

=0.0

03*

10.9

6 (5

.81)

1-

3 p=

0.61

5

>3 p

=0.0

45*

7.29

(3.5

9)

1-3

p=0.

476

>3 p

=0.0

09*

1-3

7.96

(4.1

4)

>3 p

=0.0

73

10.1

5 (5

.47)

>3

p=0

.135

6.

64 (3

.54)

>3

p=0

.050

>3

6.64

(4.1

3)

8.

59 (5

.03)

5.41

(3.2

7)

AN

OVA

(Tuk

ey H

SD) a

nd T

-test

, # Une

qual

Var

ianc

e T-

test

, *st

atis

tical

ly si

gnifi

cant

diff

eren

ce p

<0.

05


Differences in activity were found in relation to several health characteristics of residents

(Table 5.25). Residents with severe dementia had significantly fewer activity opportunities,

lower activity participation and enjoyed fewer activities compared to residents with moderate

or mild dementia. On average they had the opportunity to participate in one less activity

compared to residents with moderate dementia and three less activities compared to residents

with mild dementia. Differences in activity were found based on nutritional status. On average

residents who had a normal nutritional status had the opportunity to participate in an additional

three activities compared to those at risk of malnutrition and an additional six activities

compared to malnourished residents. Residents who were malnourished also had a significantly

lower frequency of activity participation and enjoyed significantly fewer activities than other

residents. Residents with no observed pain participated in activities more frequently than

residents with mild pain and enjoyed the greatest number of activities.

There were also differences in activity based on the level of care needs of residents as

assessed by the ACFI (Table 5.25). Residents with the highest level of care needs, requiring

physical assistance, had significantly fewer activity opportunities, less frequent participation

and enjoyed fewer activities compared to those requiring less care in the following areas:

eating, mobility and toileting. These residents had between three and four fewer activity

opportunities and scored between five and six points lower for activity participation than

residents who were independent in these areas. There were no significant differences in activity

opportunities or participation based on the level of assistance required for personal hygiene.

Residents who were more independent in personal hygiene enjoyed significantly more

activities than those who required some physical assistance. There were also differences in

activity based on resident continence with residents who did not experience incontinence

having significantly more activity opportunities, participation and enjoyment than residents

with the most frequent incontinence. Residents who had no incontinence had on average three

additional activity opportunities compared to residents who had the most frequent

incontinence. Differences were not found in activity opportunities, participation or enjoyment

based on the amount of assistance required with medications. The frequency of activity

participation differed significantly in relation to the number of complex health procedures

required. Residents who did not require any complex health procedures had a greater frequency

of activity participation than residents who required multiple complex health procedures.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

13

9

Tabl

e 5.

25. R

esid

ent a

ctiv

ity b

y re

side

nt h

ealth

and

car

e ch

arac

teris

tics

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Cog

nitiv

e im

pairm

ent

F(3,

360

)=10

.330

p<0.

001*

F(

3, 3

54)=

18.1

98

p<0.

001*

F(

3, 3

52)=

18.5

10

p<0.

001*

Una

ble

to c

ompl

ete

mea

sure

7.

04 (3

.80)

Se

vere

p=0

.983

Mod

erat

e p=

0.00

2*

Non

e/M

ild p

<0.0

01*

7.92

(4.3

3)

Seve

re p

=0.6

68

Mod

erat

e p<

0.00

1*

Non

e/M

ild p

<0.0

01*

4.99

(2.8

0)

Seve

re p

=0.6

35

Mod

erat

e p<

0.00

1*

Non

e/M

ild p

<0.0

01*

Seve

re

7.25

(4.1

9)

Mod

erat

e p=

0.04

6*

Non

e/M

ild p

<0.0

01*

8.79

(5.0

9)

Mod

erat

e p=

0.02

4*

Non

e/M

ild p

<0.0

01*

5.58

(3.1

8)

Mod

erat

e p=

0.00

6*

Non

e/M

ild p

<0.0

01*

Mod

erat

e 8.

75 (3

.76)

N

one/

Mild

p=0

.071

10

.93

(5.4

6)

Non

e/M

ild p

=0.0

03*

7.16

(3.5

6)

Non

e/M

ild p

=0.0

29*

Non

e/M

ild

10.4

9 (3

.52)

14.1

6 (5

.18)

8.81

(3.0

9)

Nut

ritio

nal s

tatu

s F(

2, 3

88)=

27.8

99

p<0.

001*

F(

2, 3

79)=

17.1

17

p<0.

001*

F(

2, 3

77)=

19.4

22

p<0.

001*

Mal

nour

ishe

d 5.

76 (3

.69)

R

isk

p<0.

001*

Nor

mal

p<0

.001

*

7.31

(4.4

1)

Ris

k p<

0.00

1*

Nor

mal

p<0

.001

*

4.78

(2.7

5)

Ris

k p<

0.00

1*

Nor

mal

p<0

.001

*

At r

isk

of m

alnu

tritio

n 8.

27 (3

.81)

N

orm

al p

=0.0

01*

10.2

1 (5

.32)

N

orm

al p

=0.0

25*

6.40

(3.3

9)

Nor

mal

p<0

.001

*

Nor

mal

10

.64

(3.9

6)

12

.48

(5.8

5)

8.

55 (3

.88)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

0

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Obs

erve

d pa

in

F(2,

342

)=0.

822

p=0.

440

F(

2, 3

34)=

4.61

3

p=0.

011*

F(

2, 3

32)=

3.12

5

p=0.

045*

Non

e 8.

26 (3

.97)

M

ild p

=0.4

53

Mod

/sev

p=0

.848

10.2

3 (5

.46)

M

ild p

=0.0

14*

Mod

/sev

p=0

.383

6.47

(3.5

3)

Mild

p=0

.108

Mod

/sev

p=0

.237

Mild

7.

48 (4

.43)

M

od/s

ev p

=0.9

87

7.74

(4.6

3)

Mod

/sev

p=0

.942

5.

31 (3

.18)

M

od/s

ev p

=0.9

33

Mod

erat

e/se

vere

7.

67 (4

.94)

8.29

(5.1

7)

4.

93 (3

.25)

ACFI

1 E

atin

g

F(3,

385

)=11

.322

p<0.

001*

F(

3, 3

76)=

13.6

46

p<0.

001*

F(

3, 3

74)=

12.5

01

p<0.

001*

A- I

ndep

ende

nt in

read

ines

s to

eat

and

eatin

g 9.

76 (4

.01)

B

p=0

.929

C p

=0.2

36

D p

=0.0

01*

12.7

5 (6

.23)

B

p=0

.809

C p

=0.1

04

D p

<0.0

01*

8.20

(3.4

3)

B p

=0.7

11

C p

=0.1

00

D p

<0.0

01*

B- S

uper

visi

on re

quire

d fo

r re

adin

ess t

o ea

t and

/or e

atin

g 9.

18 (3

.76)

C

p=0

.148

D p

<0.0

01*

11.6

0 (5

.46)

C

p=0

.097

D p

<0.0

01*

7.31

(3.6

6)

C p

=0.1

83

D p

<0.0

01*

C- P

hysi

cal a

ssis

tanc

e re

quire

d fo

r re

adin

ess t

o ea

t or e

atin

g 8.

07 (3

.98)

D

p<0

.001

* 9.

99 (5

.23)

D

p<0

.001

* 6.

41 (3

.30)

D

p<0

.001

*

D- P

hysi

cal a

ssis

tanc

e re

quire

d fo

r re

adin

ess t

o ea

t and

eat

ing

6.09

(3.8

3)

7.

13 (4

.40)

4.60

(3.0

3)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

1

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

ACFI

2 M

obili

ty

F(3,

385

)=6.

053

p<0.

001*

F(

3, 3

76)=

11.0

90

p<0.

001*

F(

3, 3

74)=

9.56

4

p<0.

001*

A- I

ndep

ende

nt in

tran

sfer

s and

lo

com

otio

n 9.

85 (3

.27)

B

p=0

.384

C p

=0.5

31

D p

=0.0

14*

13.4

0 (6

.07)

B

p=0

.447

C p

=0.1

30

D p

<0.0

01*

8.30

(3.6

3)

B p

=0.6

80

C p

=0.2

54

D p

=0.0

01*

B- S

uper

visi

on o

r phy

sical

as

sist

ance

requ

ired

for t

rans

fers

or

loco

mot

ion

8.03

(4.1

1)

C p

=0.8

98

D p

=0.5

58

11.2

6 (5

.85)

C

p=0

.950

D p

=0.0

14*

7.23

(4.2

0)

C p

=0.9

32

D p

=0.0

17*

C- S

uper

visi

on re

quire

d fo

r tra

nsfe

rs a

nd lo

com

otio

n or

su

perv

ision

for o

ne c

are

need

and

ph

ysic

al a

ssis

tanc

e fo

r the

oth

er

care

nee

d

8.58

(3.9

5)

D p

=0.0

02*

10.7

1 (5

.38)

D

p<0

.001

* 6.

83 (3

.35)

D

p<0

.001

*

D- P

hysi

cal a

ssis

tanc

e fo

r tra

nsfe

rs

and

loco

mot

ion

or m

echa

nica

l lif

ting

equi

pmen

t req

uire

d fo

r tra

nsfe

rs

7.02

(4.0

5)

8.

19 (4

.78)

5.29

(3.1

5)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

2

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

ACFI

3 P

erso

nal h

ygie

ne

F(3,

383

)=1.

729

p=0.

161

F(

3, 3

74)=

2.50

0

p=0.

059

F(

3, 3

72)=

2.80

9

p=0.

039*

A- I

ndep

ende

nt in

dre

ssin

g,

was

hing

and

gro

omin

g 11

.00

(n=1

)

13 (n

=1)

11

(n=1

)

B- S

uper

visi

on re

quire

d fo

r dr

essi

ng, w

ashi

ng o

r gro

omin

g 8.

58 (3

.35)

12.0

4 (4

.93)

7.33

(3.2

5)

C- P

hysi

cal a

ssis

tanc

e re

quire

d fo

r dr

essi

ng, w

ashi

ng o

r gro

omin

g 9.

03 (3

.98)

10.9

0 (5

.64)

7.18

(3.7

9)

D- P

hysi

cal a

ssis

tanc

e re

quire

d fo

r dr

essi

ng, w

ashi

ng a

nd g

room

ing

7.70

(4.1

0)

9.

45 (5

.37)

6.03

(3.4

1)

ACFI

4 T

oile

ting

F(

3, 3

85)=

9.87

6

p<0.

001*

F(

3, 3

76)=

10.9

46

p<0.

001*

F(

3, 3

74)=

10.1

49

p<0.

001*

A- I

ndep

ende

nt in

use

of t

oile

t and

to

ilet c

ompl

etio

n 10

.88

(3.3

2)

B p

=0.5

80

C p

=0.0

89

D p

=0.0

02*

13.1

9 (6

.18)

B

p=0

.835

C p

=0.3

87

D p

=0.0

04*

8.25

(3.6

4)

B p

=0.9

09

C p

=0.5

35

D p

=0.0

10*

B- S

uper

visi

on re

quire

d fo

r use

of

toile

t and

/or t

oile

t com

plet

ion

9.49

(3.5

7)

C p

=0.3

07

D p

<0.0

01*

11.9

7 (5

.35)

C

p=0

.631

D p

<0.0

01*

7.63

(3.3

5)

C p

=0.7

01

D p

<0.0

01*

C- P

hysi

cal a

ssis

tanc

e re

quire

d fo

r us

e of

toile

t or t

oile

t com

plet

ion

8.29

(4.1

3)

D p

=0.1

78

10.8

7 (5

.71)

D

p=0

.017

* 6.

98 (3

.80)

D

p=0

.016

*

D- P

hysi

cal a

ssis

tanc

e re

quire

d fo

r us

e of

toile

t and

toile

t com

plet

ion

7.16

(4.0

0)

8.

64 (4

.95)

5.54

(3.2

1)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

3

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

ACFI

5 C

ontin

ence

F(

3, 3

84)=

12.3

52

p<0.

001*

F(

3, 3

75)=

10.1

20

p<0.

001*

F(

3, 3

73)=

11.4

22

p<0.

001*

A- N

o ur

inar

y or

faec

al

inco

ntin

ence

or s

elf -

man

ages

co

ntin

ence

dev

ices

10.3

5 (3

.77)

B

p=0

.677

C p

=0.8

96

D p

<0.0

01*

12.2

9 (5

.69)

B

p=0

.955

C p

=1.0

00

D p

<0.0

01*

8.00

(3.7

0)

B p

=1.0

00

C p

=1.0

00

D p

<0.0

01*

B- I

ncon

tinen

t of u

rine

≤onc

e pe

r da

y or

inco

ntin

ent o

f fae

ces o

nce

or

twic

e pe

r wee

k

8.91

(3.5

1)

C p

=0.9

38

D p

=0.4

96

13.1

8 (5

.83)

C

p=0

.954

D p

=0.0

42*

7.91

(3.9

1)

C p

=0.9

99

D p

=0.1

27

C- 2

-3 e

piso

des p

er d

ay o

f urin

ary

inco

ntin

ence

or p

assi

ng u

rine

durin

g sc

hedu

led

toile

ting

or 3

-4

epis

odes

per

wee

k or

faec

al

inco

ntin

ence

or p

assi

ng fa

eces

du

ring

sche

dule

d to

iletin

g

9.71

(3.2

5)

D p

=0.0

07*

12.2

1 (5

.21)

D

p=0

.009

* 8.

07 (3

.54)

D

p=0

.002

*

D- >

3 ep

isod

es p

er d

ay u

rinar

y in

cont

inen

ce o

r pas

sing

of u

rine

durin

g sc

hedu

led

toile

ting

or >

4 ep

isod

es p

er w

eek

of fa

ecal

in

cont

inen

ce o

r pas

sing

of f

aece

s du

ring

sche

dule

d to

iletin

g

7.23

(3.9

8)

8.

93 (5

.11)

5.66

(3.2

2)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

4

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

ACFI

11

Med

icat

ion

F(

3, 3

86)=

0.43

5

p=0.

728

F(

3, 3

77)=

0.05

0

p=0.

985

F(

3, 3

75)=

0.53

3

p=0.

660

A- N

o m

edic

atio

n or

self-

man

aged

m

edic

atio

n 10

.00

(n=1

)

11.0

0 (n

=1)

10

.00

(n=1

)

B- A

pplic

atio

n of

pat

ches

at l

east

w

eekl

y, b

ut le

ss fr

eque

ntly

than

da

ily o

r nee

ds a

ssis

tanc

e fo

r <6

min

utes

per

24

hour

per

iod

with

da

ily m

edic

atio

ns

7.80

(4.0

0)

9.

86 (5

.59)

6.33

(3.5

8)

C- N

eeds

ass

istan

ce fo

r bet

wee

n 6-

11 m

inut

es p

er 2

4 ho

ur p

erio

d w

ith

daily

med

icat

ions

7.68

(4.1

7)

9.

79 (5

.38)

6.32

(3.5

0)

D- R

equi

res >

11 m

inut

es o

f as

sist

ance

with

med

icat

ion/

day

or

daily

adm

inist

ratio

n of

su

bcut

aneo

us, i

ntra

mus

cula

r or

intra

veno

us d

rug

8.16

(4.0

1)

9.

65 (5

.30)

6.09

(3.3

6)

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

5

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

ACFI

12

Com

plex

hea

lth c

are

F(

3, 3

89)=

1.60

5

p=0.

188

F(

3, 3

80)=

2.70

3

p=0.

045*

F(

3, 3

78)=

1.24

5

p=0.

293

A- N

o pr

oced

ures

(sco

re o

f 0)

8.47

(4.0

2)

B p

=0.2

40

C p

=0.3

67

D p

=0.4

89

10.2

7 (5

.42)

B

p=0

.861

C p

=0.9

42

D p

=0.0

27*

6.49

(3.4

9)

B p

=0.8

09

C p

=0.9

80

D p

=0.2

58

B- S

core

of 1

-4

7.34

(4.3

4)

C p

=0.9

34

D p

=0.9

99

9.63

(5.7

0)

C p

=0.9

86

D p

=0.2

29

6.02

(3.8

4)

C p

=0.9

32

D p

=0.7

74

C- S

core

of 5

-9

7.69

(3.9

9)

D p

=0.9

89

9.90

(5.4

8)

D p

=0.0

70

6.33

(3.4

2)

D p

=0.3

81

D- M

ultip

le c

ompl

ex h

ealth

pr

oced

ures

(sco

re o

f 10

or m

ore)

7.

47 (3

.86)

7.63

(4.0

7)

5.

36 (2

.88)

ANO

VA (T

ukey

HSD

), *s

tatis

tical

ly si

gnifi

cant

diff

eren

ce p

<0.

05


Resident activity differed based on staff assessed depression (Table 5.26). More severe

depression was associated with significantly fewer activity opportunities, less frequent

participation and enjoyment of fewer activities. On average, residents with severe depression

had three fewer activity opportunities and scored almost five points lower on activity

participation than residents without depression. Activity participation and enjoyment differed

based on aggressive verbal behaviour with residents not exhibiting these behaviours having

greater activity participation and enjoyment. In contrast, exhibiting non-aggressive verbal

behaviours was associated with more activity opportunities and enjoyment.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

14

7

Tabl

e 5.

26. R

esid

ent a

ctiv

ity b

y re

side

nt d

emen

tia re

late

d be

havi

our c

hang

es

Cha

ract

eris

tics

Opp

ortu

nity

Pa

rtic

ipat

ion

Enjo

ymen

t

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Mea

n (S

D)

Diff

eren

ce

Staf

f ass

esse

d de

pres

sion

F(

2, 3

52)=

17.4

08

p<0.

001*

F(

2, 3

45)=

18.8

10

p<0.

001*

F(

2, 3

44)=

23.6

14

p<0.

001*

Non

e

9.09

(3.7

5)

Mild

p=0

.199

Seve

re p

<0.0

01*

11.9

7 (5

.70)

M

ild p

=0.0

08*

Seve

re p

<0.0

01*

7.73

(3.5

8)

Mild

p=0

.003

*

Seve

re p

<0.0

01*

Mild

8.

25 (4

.02)

Se

vere

p <

0.00

1*

9.96

(5.4

0)

Seve

re p

=0.

001*

6.

33 (3

.41)

Se

vere

p <

0.00

1*

Seve

re

6.04

(3.6

3)

7.

45 (4

.24)

4.54

(2.6

6)

Verb

al b

ehav

iour

- ove

rall

t(3

66)=

-2.5

42

p=0.

011*

t(3

57)=

-0.0

85

p=0.

932

t(3

55)=

-0.9

10

p=0.

363

Non

e ex

hibi

ted

7.15

(3.8

7)

9.

69 (5

.38)

6.01

(3.3

8)

Som

e ex

hibi

ted

8.22

(4.2

0)

9.

74 (5

.63)

6.35

(3.6

4)

Verb

al b

ehav

iour

- agg

ress

ive

t(3

78)=

1.76

0

p=0.

079

t(2

16)=

3.06

8#

p=0.

002*

t(2

14)=

3.28

7#

p=0.

001*

Non

e ex

hibi

ted

7.99

(4.0

4)

10

.29

(5.6

1)

6.

59 (3

.59)

Som

e ex

hibi

ted

7.18

(4.1

0)

8.

48 (4

.92)

5.33

(3.1

9)

Verb

al b

ehav

iour

-non

-agg

ress

ive

t(3

71)=

-4.1

79

p<0.

001*

t(2

78)=

-3.3

23#

p=0.

076

t(2

76)=

-2.6

04#

p=0.

010*

Non

e ex

hibi

ted

7.04

(3.9

3)

9.

28 (5

.19)

5.78

(3.3

1)

Som

e ex

hibi

ted

8.82

(4.1

0)

10

.35

(5.8

2)

6.

78 (3

.72)

ANO

VA (T

ukey

HSD

) and

T-te

st, #

Une

qual

Var

ianc

e T-

test

, *st

atis

tical

ly si

gnifi

cant

diff

eren

ce p

<0.

05


Overall agitation was not found to correlate with activity opportunities or participation

(Table 5.27). A negative correlation between overall agitation and activity enjoyment was

significant but weak. Agitation was separated into aggressive behaviour, physically non-

aggressive behaviour and verbally agitated behaviour. Aggressive behaviour was weakly but

significantly and negatively associated with activity opportunities, participation and

enjoyment. Physically non-aggressive agitation and verbal agitation were not correlated with

any measure of activity. There was a weak negative correlation between wandering behaviour

and activity opportunities. Wandering behaviour was not correlated with activity participation

or enjoyment.

Table 5.27. Correlations between resident activity and resident dementia related behaviour

changes (continuous variables)

Resident characteristics Activity

Opportunity Participation Enjoyment

Agitation

Overall agitation -0.090, p=0.074

n=396

-0.099, p=0.053

n=387

-0.119, p=0.020*

n=385

Aggressive behaviour -0.246, p<0.001*

n=396

-0.257, p<0.001*

n=387

-0.288, p<0.001*

n=385

Physically non- aggressive behaviour

0.031, p=0.535

n=396

0.001, p=0.978

n=387

0.002, p=0.976

n=385

Verbally agitated behaviour

0.081, p=0.108

n=396

0.055, p=0.278

n=387

0.047, p=0.358

n=385

Wandering behaviour -0.212, p=0.001*

n=263

-0.015, p=0.809

n=259

-0.117, p=0.060

n=258

Pearson correlation, *statistically significant correlation p<0.05

Positive and negative affect did not differ based on age, gender, marital status, living in

low or high care, ageing in place or time since dementia diagnosis (Table 5.28). Positive affect

was significantly different based on preferred language and length of stay in the RACF.

Residents whose preferred language was English and had the shortest length of stay had higher

positive affect than other residents. Negative affect differed based on whether residents were

living in a dementia-specific area or not with those in the dementia-specific areas having a

significantly higher negative affect.


Table 5.28. Resident affect by resident demographic characteristics



Age (years) F(2, 377)=0.126

p=0.881

F(2, 370)=2.503

p=0.083

<80 11.68 (3.17) 80-90 p=0.932

>90 p=1.00

8.98 (3.49) 80-90 p=0.158

>90 p=0.069

80-90 11.85 (2.97) >90 p=0.903 8.00 (3.41) >90 p=0.719

>90 11.69 (3.08) 7.69 (3.31)

Gender t(133)=1.211#

p=0.228

t(376)=-0.615

p=0.539

Male 12.13 (2.64) 7.83 (3.49)

Female 11.71 (3.10) 8.10 (3.37)

Marital status t(377)=-0.431

p=0.667

t(371)=1.134

p=0.258

Married/de facto 11.66 (3.20) 8.36 (3.51)

Separated/divorced/ widowed/single

11.81 (2.96) 7.89 (3.34)

Preferred language t(380)=3.505

p=0.001*

t(373)=-0.461

p=0.645

English 11.97 (2.89) 8.03 (3.41)

Other 10.03 (3.48) 8.32 (3.31)

Low care t(383)=0.712

p=0.477

t(376)=-0.566

p=0.572

Yes 12.05 (2.65) 7.81 (3.36)

No 11.75 (3.07) 8.08 (3.40)

High care t(383)=-1.807

p=0.072

t(376)=0.570

p=0.569

Yes 11.57 (3.14) 8.12 (3.42)

No 12.13 (2.79) 7.92 (3.35)

Ageing in place t(383)=0.237

p=0.813

t(376)=-1.042

p=0.298

Yes 11.85 (2.85) 7.74 (3.15)

No 11.77 (3.07) 8.15 (3.47)




Dementia-specific unit t(383)=-0.885

p=0.377

t(376)=2.259

p=0.024*

Yes 11.61 (3.29) 8.56 (3.42)

No 11.89 (2.84) 7.75 (3.34)

Length of stay in the RACF (years) F(2, 380)=3.371

p=0.035*

F(2, 373)=0.121

p=0.886

<1 12.54 (2.81) 1-3 p=0.048

>3 p=0.053

8.22 (3.58) 1-3 p=0.886

>3 p=0.910

1-3 11.59 (3.08) >3 p=0.998 8.01 (3.40) >3 p=0.999

>3 11.56 (3.01) 8.02 (3.28)

Time since dementia diagnosis (years) F(2, 253)=1.458

p=0.235

F(2, 250)=0.062

p=0.940

<1 12.48 (3.12) 1-3 p=0.332

>3 p=0.235

8.32 (3.63) 1-3 p=1.000

>3 p=0.960

1-3 11.81 (2.72) >3 p=0.887 8.32 (3.34) >3 p=0.939

>3 11.61 (3.12) 8.15 (3.51) ANOVA (Tukey HSD) and T-test, #Unequal Variance T-test, *statistically significant difference p<0.05

Positive affect differed for residents with varying degrees of cognitive impairment (Table

5.29). Residents with severe cognitive impairment had significantly lower positive affect than

residents with mild cognitive impairment. Nutritional status and pain were significantly

associated with positive and negative affect. Malnourished residents had significantly lower

positive affect than all other residents and significantly higher negative affect than residents of

normal nutritional status. Residents with no observed pain had significantly higher positive

affect than those with mild pain while residents with moderate or severe pain had significantly

higher negative affect than residents with less pain.

There were a few differences in affect based on the level of resident care as assessed by

the ACFI (Table 5.29). Residents who required an intermediate level of assistance with eating

had the highest observed positive affect which was significantly higher than residents who

required physical assistance. The level of assistance required for toileting was also associated

with differences in positive affect as residents who required only supervision had significantly

higher positive affect than residents who required physical assistance. Continence was the only

area of care found to be associated with negative affect. Residents who had no incontinence or


self-managed continence devices had significantly lower negative affect than residents with the

most frequent incontinence. No significant differences were found in positive or negative affect

based on the level of assistance required with mobility, personal hygiene or medication or the

extent of complex health care required.

Table 5.29. Resident affect by resident health and care characteristics



Cognitive impairment F(3, 354)=6.950

p<0.001*

F(3, 347)=1.273

p=0.284

Unable to complete measure

11.17 (3.06)

Severe p=0.982

Moderate p=0.013*

None/Mild p=0.001*

8.31 (3.41) Severe p=0.989

Moderate p=0.566

None/Mild p=0.559

Severe 11.33 (3.63)

Moderate p=0.134

None/Mild p=0.006*

8.48 (3.42) Moderate p=0.492

None/Mild p=0.477

Moderate 12.29 (2.60)

None/Mild p=0.227 7.76 (3.43) None/Mild p=0.967

None/Mild 13.33 (2.11)

7.46 (3.00)

Nutritional status F(2, 380)=6.892

p=0.001*

F(2, 373)=4.498

p=0.012*

Malnourished 10.81 (3.29)

Risk p=0.001*

Normal p=0.027*

8.82 (3.67) Risk p=0.073

Normal p=0.013*

At risk of malnutrition 12.09 (2.90)

Normal p=0.949 7.92 (3.32) Normal p=0.268

Normal 12.24 (2.55)

7.05 (2.90)

Observed pain F(2, 336)=5.617

p=0.004*

F(2, 331)=6.717

p=0.001*

None 12.03 (2.90)

Mild p=0.020*

Mod/sev p=0.072

7.92 (3.30) Mild p=0.875

Mod/sev p=0.001*

Mild 10.74 (3.40)

Mod/sev p=0.834 7.65 (3.37) Mod/sev p=0.002*

Moderate/severe 10.21 (5.60)

11.14 (2.82)




ACFI 1 Eating F(3, 377)=3.516

p=0.015*

F(3, 370)=0.523

p=0.667

A- Independent in readiness to eat and eating

11.29 (3.18)

B p=0.789

C p=0.553

D p=0.979

7.67 (3.15) B p=0.992

C p=0.982

D p=0.797

B- Supervision required for readiness to eat and/or eating

11.96 (2.87)

C p=0.945

D p=0.155

7.91 (3.38) C p=0.999

D p=0.769

C- Physical assistance required for readiness to eat or eating

12.18 (2.82)

D p=0.011* 7.96 (3.56) D p=0.723

D- Physical assistance required for readiness to eat and eating

11.00 (3.29)

8.43 (3.18)

ACFI 2 Mobility F(3, 377)=1.437

p=0.232

F(3, 370)=0.761

p=0.516

A- Independent in transfers and locomotion

11.45 (2.98)

B p=0.739

C p=0.810

D p=1.000

7.55 (3.03) B p=0.871

C p=0.992

D p=0.808


12.32 (2.60)

C p=0.976

D p=0.497

8.30 (3.61) C p=0.867

D p=1.000


12.08 (2.95)

D p=0.296 7.78 (3.24) D p=0.562


11.50 (3.08)

8.27 (3.55)




ACFI 3 Personal hygiene F(3, 375)=0.494

p=0.687

F(3, 368)=2.148

p=0.094

A- Independent in dressing, washing and grooming

14.00 (n=1)

6.00 (n=1)

B- Supervision required for dressing, washing or grooming

12.38 (2.87)

7.88 (3.27)


11.68 (3.00)

6.79 (2.74)


11.79 (3.01)

8.21 (3.47)

ACFI 4 Toileting F(3, 377)=4.065

p=0.007*

F(3, 370)=1.871

p=0.134

A-Independent in use of toilet and toilet completion

10.94 (2.17)

B p=0.089

C p=0.637

D p=0.862

6.31 (2.47) B p=0.449

C p=0.287

D p=0.124


12.87 (2.59)

C p=0.262

D p=0.006*

7.71 (3.26) C p=0.964

D p=0.676


11.92 (2.98)

D p=0.801 8.00 (3.30) D p=0.960


11.54 (3.09)

8.24 (3.49)




ACFI 5 Continence F(3, 376)=1.811

p=0.145

F(3, 369)=3.273

p=0.021*


12.28 (2.92)

B p=0.797

C p=1.000

D p=0.458

7.02 (3.15) B p=0.891

C p=1.000

D p=0.048*


13.18 (2.04)

C p=0.834

D p=0.328

7.82 (3.06) C p=0.893

D p=0.960


12.29 (2.94)

D p=0.681 6.96 (3.19) D p=0.174

D- >3 episodes per day urinary incontinence or passing of urine during scheduled toileting or >4 episodes per week of faecal incontinence or passing of faeces during scheduled toileting

11.63 (3.03)

8.33 (3.44)




ACFI 11 Medication F(3, 378)=0.468

p=0.704

F(3, 371)=1.086

p=0.355

A- No medication or self-managed medication

15.00 (n=1)

7.00 (n=1)

B- Application of patches at least weekly, but less than daily or needs assistance for <6 minutes per 24 hour period with daily medications

11.93 (3.10)

7.57 (3.31)

C- Needs assistance between 6-11 minutes per 24 hour period with daily medications

11.77 (2.91)

8.33 (3.46)

D- Needs >11 minutes of assistance with medication per day or daily administration of subcutaneous, intramuscular or intravenous drug

11.74 (2.99)

8.15 (3.41)

ACFI 12 Complex health care F(3, 381)=0.961

p=0.411

F(3, 374)=1.027

p=0.380

A- No procedures (score of 0)

12.09 (3.07)

B p=0.503

C p=0.569

D p=1.000

7.89 (3.19) B p=0.984

C p=0.577

D p=0.990

B- score of 1-4 11.45 (3.06)

C p=0.981

D p=0.745

7.70 (3.29) C p=0.499

D p=1.000

C- score of 5-9 11.62 (3.09)

D p=0.846 8.42 (3.61) D p=0.638

D- Multiple complex health procedures (score of 10 or more)

12.05 (2.40)

7.70 (3.32)

ANOVA (Tukey HSD), *statistically significant difference p<0.05

Positive and negative affect differed based on staff assessed depression (Table 5.30).

Residents assessed as not having depression had significantly higher positive affect and

significantly lower negative affect than residents with depression. Aggressive verbal behaviour

was associated with positive affect with residents not exhibiting this behaviour having higher


positive affect than those who did. Residents who exhibited aggressive, non-aggressive and

overall verbal behaviour had higher negative affect than those who did not exhibit these

behaviours.

Table 5.30. Resident affect by resident dementia related behaviour changes



Staff assessed depression F(2, 345)=33.948

p<0.001*

F(2, 340)=76.278

p<0.001*

None 13.35 (2.05) Mild p<0.001*

Severe p<0.001*

5.84 (2.34) Mild p<0.001*

Severe p<0.001*

Mild 12.04 (2.58) Severe p<0.001* 7.78 (3.00) Severe p<0.001*

Severe 10.24 (3.30) 10.84 (3.15)

Verbal behaviour- overall t(358)=1.374

p=0.170

t(351)=-7.811

p<0.001*

None exhibited 11.94 (3.21) 6.65 (2.98)

Some exhibited 11.49 (3.00) 9.25 (3.26)

Verbal behaviour- aggressive t(370)=3.427

p=0.001*

t(363)=-10.454

p<0.001*

None exhibited 12.12 (2.98) 7.00 (3.05)

Some exhibited 10.91 (3.20) 10.64 (2.80)

Verbal behaviour-non-aggressive t(363)=0.513

p=0.609

t(356)=-5.118

p<0.001*

None exhibited 11.78 (3.20) 7.25 (3.17)

Some exhibited 11.61 (2.92) 9.05 (3.37) ANOVA (Tukey HSD) and T-test, *statistically significant difference p<0.05

Agitation and wandering behaviour were significantly correlated with affect (Table 5.31).

All correlations with positive affect were negative while correlations with negative affect were

positive. For example, as agitation increased positive affect decreased and negative affect

increased. Overall agitation, aggressive agitated behaviour, verbal agitation and wandering

behaviour were weakly correlated with positive affect and moderately correlated with negative

affect. The correlation between physically non-aggressive behaviour and negative affect was

moderate.


Table 5.31. Correlations between resident affect and resident dementia related behaviour

changes (continuous variables)

Resident characteristics Affect

Positive affect Negative affect

Agitation

Overall agitation -0.233, p<0.001*

n=388

0.629, p<0.001*

n=381

Aggressive behaviour -0.299, p<0.001*

n=388

0.405, p<0.001*

n=381

Physically non- aggressive behaviour

-0.089, p=0.080

n=388

0.517, p<0.001*

n=381

Verbally agitated behaviour -0.137, p=0.007*

n=388

0.584, p<0.001*

n=381

Wandering behaviour -0.145, p=0.020*

n=258

0.413, p<0.001*

n=253 Pearson correlation, *statistically significant correlation p<0.05

5.2.3 Correlations among AAIQOL summary scores

All AAIQOL summary scores were significantly correlated with each other (Table 5.32).

The strongest correlation was between activity participation and enjoyment as almost all

activities that were participated in were enjoyed. Activity opportunities were strongly and

positively correlated with activity participation and enjoyment. Positive affect was moderately

and positively correlated with all measures of activity while the correlations between negative

affect and measures of activity were weak and negative. Positive and negative affect were

weakly and negatively correlated with each other.


Table 5.32. Correlation between AAIQOL summary scores

Activity Affect

Opportunity Participation Enjoyment Positive affect Negative affect

Activity opportunity

- 0.672, p<0.001*

n=387

0.724, p<0.001*

n=385

0.361, p<0.001*

n=388

-0.148, p=0.004*

n=381

Activity participation

0.920, p<0.001*

n=385

0.367, p<0.001*

n=379

-0.136, p=0.008*

n=372

Activity enjoyment

0.407, p<0.001*

n=377

-0.160, p=0.002*

n=370

Positive affect

-0.200, p<0.001*

n=379

Negative affect

-

Pearson correlation *statistically significant correlation p<0.05

5.3 MULTIVARIATE REGRESSION ANALYSES

The following regression models were developed using a hierarchical multiple regression

technique. For each of the models, independent variables were added in the following blocks:

1) RACF characteristics; 2) resident demographics; 3) resident health and care characteristics;

and 4) variables representing dementia related behaviour changes. Due to the relatively low

sample size of the wandering behaviour variable, models adding the fourth block of variables

with and without wandering behaviour were developed separately. Models with the wandering

behaviour variable excluded the variable for physically non-aggressive agitated behaviour due

to the high correlation between the two variables.

5.3.1 Activity opportunity models

The initial activity opportunity model containing RACF characteristics significantly

predicted the number of activities residents had the opportunity to participate in, explaining

5.4% of the variation in activity opportunities (Table 5.33). All RACF characteristics, except

location and the PCECAT score were significant variables. After removing the insignificant

variables, a second model significantly predicted activity opportunities, explaining 5.7% of the


variation in activity opportunities. All RACF characteristics remaining in this model were

significant. After adjusting for the other variables in the model, the EAT score had the greatest

influence on activity opportunities. For every one-point increase in RACF EAT score, which

equates to 10%, residents on average had the opportunity to participate in an additional 10

activities. The categories with more than one additional predicted activity opportunity were:

government-run RACFs versus charitable organisations and medium versus large RACFs.

Residents of RACFs with one or more DT staff hours per resident per week had almost one

additional activity opportunity than residents of RACFs with a ratio of less than one.

Table 5.33. Activity opportunity regression models 1 and 2

Model 1 Model 2

B SE B β t p B SE B β t p (Constant) 2.943 1.992 1.477 .140 3.486 1.945 1.792 .074 Location Inner reg

vs major city

-.191 .524 -.022 -.366 .715

Outer reg vs major city

-.612 .629 -.061 -.973 .331

Organisation type

Private vs charitable

.615 .565 .070 1.088 .277 .776 .549 .089 1.414 .158

Gov vs charitable 1.382 .583 .153 2.369 .018 1.527 .552 .169 2.768 .006

DT staff ratio- high vs low .994 .433 .121 2.294 .022 .992 .428 .120 2.318 .021

RACF size Medium vs large

1.237 .603 .123 2.050 .041 1.421 .578 .142 2.458 .014

Small vs large -.928 .595 -.093 -1.559 .120 -.968 .587 -.097 -1.649 .100

EAT mean score 10.177 3.479 .189 2.925 .004 10.075 2.971 .187 3.391 .001

PCECAT score .011 .013 .049 .882 .378 POLIF- activity occurrence -.168 .066 -.137 -2.538 .012 -.156 .065 -.127 -2.403 .017

F(10, 366)=3.146, p=0.001 n=377 R2=0.079 Adj R2=0.054

F(7, 369)=4.248, p<0.001 n=377 R2=0.075 Adj R2=0.057

In the third model, resident demographic characteristics were added to the significant

RACF characteristics. This model significantly predicted activity opportunities, explaining

9.5% of the variation in activity opportunities (Table 5.34). This was a small but significant

improvement from model two. In this model all RACF variables, resident marital status and


length of stay at the RACF were significant. After removing the insignificant variables from

model three, model four significantly predicted activity opportunities, explaining 8.7% of the

variation in activity opportunities. After adjusting for the other variables in the model, EAT

score, organisational type and length of stay had the greatest influence on activity opportunities.

The influence of the EAT score was less than in model two as for every one-point increase in

EAT score residents were predicted to have an additional nine activity opportunities. The

influence of organisational type increased with residents of government-run RACFs predicted

to have almost two additional activity opportunities compared to residents of charitable

RACFs. Residents who had lived in the RACF for over three years had almost two fewer

activity opportunities than residents who had lived there for less than one year.


Model 3 Model 4 B SE B β t p B SE B β t p

(Constant) 4.128 2.038 2.026 .044 3.701 1.984 1.865 .063 Organisation type

Private vs charitable .819 .558 .095 1.467 .143 .889 .553 .103 1.608 .109


DT staff ratio- high vs low .891 .432 .109 2.063 .040 1.042 .426 .127 2.448 .015 RACF size Medium vs

large 1.572 .592 .158 2.654 .008 1.429 .580 .144 2.462 .014

Small vs large -.990 .604 -.099 -1.637 .102 -1.146 .590 -.115 -1.942 .053

EAT mean score 8.767 3.020 .162 2.903 .004 9.221 2.997 .170 3.076 .002 POLIF- activity occurrence -.130 .066 -.107 -1.965 .050 -.140 .064 -.116 -2.172 .031

Age 80-90 vs <80 -.128 .662 -.016 -.193 .847

>90 vs <80 -1.328 .743 -.147 -1.787 .075

Gender- female vs male -.144 .547 -.014 -.264 .792 Marital status- other vs married/ de facto 1.183 .544 .125 2.174 .030 .937 .480 .099 1.952 .052

Language- other vs English -.881 .748 -.062 -1.178 .240 Length of stay

Medium vs shortest -.352 .548 -.043 -.643 .521 -.593 .540 -.072 -1.097 .273

Longest vs shortest -1.328 .565 -.157 -2.350 .019 -1.573 .558 -.186 -2.819 .005

F(14, 344)=3.676, p<0.001 n=359 R2=0.130 Adj R2=0.095

∆R2 p=0.006

F(10, 355)=4.472, p<0.001 n=366 R2=0.112 Adj R2=0.087


Model five, adding resident health and care characteristics significantly predicted activity

opportunities, explaining 22.1% of the variation in activity opportunities (Table 5.35). This is

a large increase in the variation explained by the model with the previous model including

RACF characteristics and resident demographics explaining less than 9% of the variation in

activity opportunities. After adjusting for the other variables in the model, EAT score, the

POLIF activity summary score, marital status and length of stay were no longer significant.

After removing the insignificant variables from model five, model six significantly predicted

activity opportunities, explaining 25.0% of the variation in activity opportunities. In this model,

nutritional status, cognitive impairment and continence had the greatest influence on activity

opportunities. Malnourished residents were predicted to have almost four fewer activity

opportunities compared to residents of normal nutritional status. The categories with more than

two fewer predicted activity opportunities were: moderate/severe cognitive impairment versus

mild cognitive impairment and most frequent incontinence versus no incontinence.



(Constant) 8.015 5.926 1.353 .177 13.351 .940 14.198 <.001 Organisation type

Private vs charitable 1.928 .616 .222 3.129 .002 1.154 .529 .135 2.183 .030


DT staff ratio- high vs low 1.339 .453 .168 2.955 .003 1.177 .402 .147 2.924 .004 RACF size Medium vs

large 1.526 .625 .153 2.442 .015 .772 .547 .080 1.413 .159

Small vs large -1.700 .624 -.180 -2.722 .007 -1.609 .547 -.169 -2.943 .003

EAT mean score 5.697 3.268 .105 1.744 .082

POLIF - activity occurrence -.039 .067 -.034 -.585 .559

Marital Status- other vs married/ de facto .171 .535 .018 .320 .750

Length of stay

Medium vs shortest -.372 .591 -.046 -.630 .529

Longest vs shortest -.646 .626 -.077 -1.032 .303



Cognitive impairment

Moderate vs mild -2.197 .720 -.272 -3.052 .003 -2.239 .675 -.274 -3.316 .001

Severe vs. mild -2.335 .847 -.221 -2.758 .006 -2.842 .746 -.282 -3.808 <.001

Unable to complete vs mild

-2.095 .834 -.244 -2.512 .013 -2.446 .719 -.292 -3.402 .001

Nutritional status

At risk of malnutrition vs normal

-1.495 .703 -.176 -2.126 .034 -1.719 .625 -.206 -2.752 .006

Malnourished vs normal -3.070 .875 -.314 -3.509 .001 -3.793 .744 -.402 -5.097 <.001

Pain Mild vs none .063 .676 .005 .093 .926

Moderate/ severe vs none

1.608 1.144 .080 1.405 .161

ACFI 1 Eating

B (supervision) vs A (independent)

-.330 1.127 -.034 -.293 .770

C (some assistance) vs A (independent)

-.726 1.133 -.091 -.641 .522

D (substantial assistance) vs A (independent)

-1.669 1.261 -.175 -1.324 .187

ACFI 2 Mobility

B (some supervision or assistance) vs A (independent)

.610 1.531 .041 .398 .691

C (substantial supervision or some assistance) vs A (independent)

.164 1.340 .021 .123 .902


.453 1.454 .057 .311 .756

ACFI 3 Personal hygiene


1.755 3.871 .112 .453 .651


2.181 3.918 .164 .557 .578


2.835 3.926 .269 .722 .471



ACFI 4 Toileting


-.781 1.458 -.075 -.535 .593


-1.328 1.609 -.122 -.825 .410


-.991 1.695 -.121 -.584 .559

ACFI 5 Continence

B (some incontinence) vs A (no incontinence)

-1.957 1.480 -.080 -1.322 .187 -1.876 1.281 -.076 -1.464 .144

C (frequent incontinence) vs A (no incontinence)

-1.121 1.076 -.071 -1.041 .299 -1.292 .879 -.084 -1.469 .143

D (most frequent incontinence) vs A (no incontinence)

-2.371 .813 -.254 -2.917 .004 -2.550 .585 -.275 -4.359 <.001

ACFI 11 Medication

B (minimal assistance) vs A (no assistance)

.871 3.877 .103 .225 .822

C (some assistance) vs A (no assistance)

.680 3.867 .080 .176 .860

D (most assistance) vs A (no assistance)

1.511 3.880 .182 .389 .697

ACFI 12 Complex health care

B (few procedures) vs A (no procedures)

-1.573 .679 -.151 -2.317 .021 -.968 .579 -.092 -1.672 .095

C (some procedures) vs A (no procedures)

-.831 .601 -.102 -1.383 .168 -.048 .496 -.006 -.097 .923

D (multiple complex procedures) vs A (no procedures)

-1.012 .866 -.082 -1.168 .244 -.810 .694 -.066 -1.168 .244

F(38, 254)=3.177, p<0.001 n=293 R2=0.322 Adj R2=0.221

∆R2 p<0.001

F(16, 320)=8.009, p<0.001 n=337 R2=0.286 Adj R2=0.250


In the seventh model, variables representing dementia related behaviour changes,

excluding wandering behaviour, were added. This model significantly predicted activity

opportunities, explaining 30.8% of the variation in activity opportunities (Table 5.36). Again,

this was a large and significant increase in the variation explained by the model, with the

variables of dementia related behaviour changes explaining an additional 6% of the variation

in activity opportunities. After adding this block of variables, DT staff ratio, RACF size and

complex health care needs were no longer significant. After removing the insignificant

variables, model eight significantly predicted activity opportunities, explaining 27.1% of the

variation in activity opportunities. Although no new variables were added, in model eight

organisational type was no longer significant. Model nine, including cognitive impairment,

nutritional status, incontinence, depression, non-aggressive verbal behaviour and aggressive

agitated behaviour, significantly predicted activity opportunities, explaining 27.0% of the

variation in activity opportunities. After adjusting for the other variables in the model,

nutritional status had the greatest influence on activity opportunities with malnourished

residents having three fewer activity opportunities than residents of normal nutritional status.

The categories with approximately two fewer activity opportunities were: severe cognitive

impairment versus mild cognitive impairment and the most frequent incontinence versus no

incontinence. In relation to dementia related behaviour changes, non-aggressive verbal

behaviour had the greatest influence on activity opportunities. Residents who exhibited some

non-aggressive verbal behaviour had an additional two activity opportunities compared to

residents who did not exhibit this behaviour.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

16

5

Tabl

e 5.

36. A

ctiv

ity o

ppor

tuni

ty re

gres

sion

mod

els 7

, 8 a

nd 9

M

odel

7

Mod

el 8

M

odel

9

B

SE B

β

t p

B

SE B

β

t p

B

SE B

β

t p

(Con

stan

t) 13

.102

1.

023

12

.812

<.

001

13.4

34

.902

14.8

90

<.00

1 13

.661

.8

91

15

.331

<.

001

Org

anis

atio

n ty

pe

Priv

ate

vs c

harit

able

.3

86

.586

.0

44

.658

.5

11

.420

.4

86

.048

.8

65

.388

Gov

vs c

harit

able

1.

161

.541

.1

36

2.14

4 .0

33

.759

.4

91

.087

1.

546

.123

DT

staf

f rat

io- h

igh

vs lo

w

.784

.4

41

.098

1.

778

.077

RA

CF

size

M

ediu

m v

s lar

ge

.236

.6

05

.024

.3

89

.697

Smal

l vs l

arge

-.9

97

.576

-.1

08

-1.7

32

.085

Cog

nitiv

e im

pairm

ent

Mod

erat

e vs

mild

-2

.211

.6

65

-.275

-3

.326

.0

01

-1.7

23

.642

-.2

13

-2.6

83

.008

-1

.639

.6

40

-.203

-2

.559

.0

11

Seve

re v

s mild

-2

.713

.7

63

-.273

-3

.556

<.

001

-2.5

46

.736

-.2

50

-3.4

58

.001

-2

.528

.7

36

-.248

-3

.433

.0

01

Una

ble

to c

ompl

ete

vs m

ild

-1.6

14

.775

-.1

87

-2.0

81

.038

-1

.532

.7

18

-.179

-2

.132

.0

34

-1.3

05

.703

-.1

53

-1.8

55

.065

Nut

ritio

nal

stat

us

At r

isk

of

mal

nutri

tion

vs

norm

al

-1.5

08

.656

-.1

79

-2.2

99

.022

-1

.391

.6

41

-.166

-2

.169

.0

31

-1.3

01

.639

-.1

55

-2.0

36

.043

Mal

nour

ishe

d vs

no

rmal

-2

.839

.8

28

-.290

-3

.427

.0

01

-3.0

94

.792

-.3

21

-3.9

07

<.00

1 -3

.048

.7

88

-.316

-3

.870

<.

001

AC

FI 5

C

ontin

ence

B

(som

e in

cont

inen

ce) v

s A

(no

inco

ntin

ence

) -1

.898

1.

325

-.080

-1

.432

.1

53

-1.7

17

1.23

0 -.0

77

-1.3

96

.164

-1

.813

1.

207

-.082

-1

.501

.1

34

C (f

requ

ent

inco

ntin

ence

) vs A

(n

o in

cont

inen

ce)

-.933

.9

49

-.059

-.9

83

.326

-.6

80

.888

-.0

45

-.766

.4

44

-.789

.8

86

-.052

-.8

91

.374

D (m

ost f

requ

ent

inco

ntin

ence

) vs A

(n

o in

cont

inen

ce)

-2.2

16

.599

-.2

43

-3.6

97

<.00

1 -1

.974

.5

70

-.218

-3

.463

.0

01

-1.9

47

.568

-.2

15

-3.4

28

.001

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

16

6

M

odel

7

Mod

el 8

M

odel

9

B

SE B

β

t p

B

SE B

β

t p

B

SE B

β

t p

AC

FI 1

2 C

ompl

ex h

ealth

ca

re

B (f

ew p

roce

dure

s)

vs A

(no

proc

edur

es)

-.671

.6

22

-.063

-1

.079

.2

81

C (s

ome

proc

edur

es)

vs A

(no

proc

edur

es)

.273

.5

35

.034

.5

11

.610

D (m

ultip

le c

ompl

ex

proc

edur

es) v

s A (n

o pr

oced

ures

) -.9

03

.740

-.0

75

-1.2

19

.224

Dep

ress

ion

Mild

vs n

one

-.6

42

.505

-.0

80

-1.2

70

.205

-.2

46

.484

-.0

31

-.508

.6

12

-.281

.4

84

-.035

-.5

81

.562

Se

vere

vs n

one

-1

.694

.6

26

-.192

-2

.706

.0

07

-1.3

09

.569

-.1

46

-2.3

01

.022

-1

.343

.5

69

-.150

-2

.359

.0

19

Agg

ress

ive

verb

al b

ehav

iour

- som

e vs

no

ne

-.602

.5

82

-.069

-1

.035

.3

02

Non

-agg

ress

ive

verb

al b

ehav

iour

- so

me

vs n

one

1.55

9 .4

68

.194

3.

331

.001

1.

826

.414

.2

25

4.40

8 <.

001

1.85

6 .4

13

.229

4.

488

<.00

1

Agg

ress

ive

agita

ted

beha

viou

r sub

scal

e -.0

75

.032

-.1

56

-2.3

66

.019

-.0

80

.027

-.1

64

-2.9

76

.003

-.0

85

.027

-.1

74

-3.1

67

.002

Phys

ical

ly n

on-a

ggre

ssiv

e ag

itate

d be

havi

our s

ubsc

ale

.046

.0

34

.085

1.

346

.180

Ver

bal a

gita

tion

subs

cale

.0

26

.044

.0

44

.589

.5

56

F(

23, 2

59)=

6.44

9, p

<0.0

01 n

=283

R

2 =0.

364

Adj

R2 =

0.30

8 ∆R

2 p<0

.001

F(14

, 291

)=9.

090,

p<0

.001

n=3

06

R2 =

0.30

4 A

dj R

2 =0.

271

F(12

, 293

)=10

.385

, p<0

.001

n=3

06

R2 =

0.29

8 A

dj R

2 =0.

270


An alternative model seven was developed, including wandering behaviour and

excluding physically non-aggressive agitated behaviour. This model had a sample size of 206

compared to 283 in the equivalent model excluding wandering behaviour. Model seven,

including wandering behaviour, significantly predicted activity opportunities, explaining

22.2% of the variation in activity opportunities (Table 5.37). In this model, the RACF

characteristics and complex health care needs were no longer significant. After removing the

insignificant variables, alternative model eight significantly predicted activity opportunities,

explaining 24.7% of the variation in activity opportunities. After adjusting for the other

variables in the model, cognitive impairment and nutritional status had the greatest influence

on activity opportunities. The categories with approximately three fewer predicted activity

opportunities were: severe versus mild cognitive impairment and malnourished versus normal

nutritional status. The categories with approximately two fewer predicted activity opportunities

were: most frequent incontinence versus no incontinence and severe depression versus no

depression. In contrast, residents exhibiting some non-aggressive verbal behaviour were

predicted to have almost two additional activity opportunities compared to residents not

exhibiting this behaviour.

Table 5.37. Activity opportunity regression alternative models 7 and 8 (including wandering

behaviour)

Model 7a (including wandering behaviour)


B SE B β t p B SE B β t p

(Constant) 12.511 1.253 9.984 <.000 13.024 .881 14.778 <.001 Organisation type

Private vs charitable .547 .732 .062 .747 .456

Gov vs charitable .985 .680 .118 1.448 .149

DT staff ratio- low vs high .761 .557 .096 1.367 .173

RACF size Medium vs large .795 .758 .083 1.049 .296

Small vs large -.852 .742 -.091 -1.149 .252


Moderate vs mild -1.960 .773 -.249 -2.535 .012 -1.620 .650 -.201 -2.493 .013

Severe vs mild -2.679 .942 -.262 -2.844 .005 -2.783 .743 -.273 -3.745 <.001


-.607 .931 -.064 -.652 .515 -1.501 .711 -.176 -2.111 .036





Nutritional status


-1.172 .737 -.129 -1.591 .113 -1.358 .648 -.162 -2.095 .037

Malnourished vs normal -2.970 1.114 -.224 -2.666 .008 -3.338 .794 -.347 -4.203 <.001

ACFI 5 Continence


-1.869 1.427 -.092 -1.310 .192 -1.756 1.226 -.079 -1.433 .153


-.988 1.090 -.067 -.907 .366 -.802 .899 -.053 -.892 .373


-2.026 .663 -.240 -3.055 .003 -2.164 .573 -.239 -3.779 <.001



-.451 .792 -.041 -.570 .570


.473 .648 .056 .730 .466


-.593 .953 -.046 -.622 .535

Depression Mild vs none -.267 .619 -.033 -.431 .667 -.400 .490 -.050 -.817 .414 Severe vs none -1.904 .763 -.209 -2.495 .013 -1.727 .564 -.193 -3.060 .002

Aggressive verbal behaviour- some vs none -.865 .794 -.091 -1.090 .277

Non-aggressive verbal behaviour- some vs. none 1.308 .602 .161 2.174 .031 1.718 .417 .212 4.116 <.001

Aggressive agitated behaviour subscale -.028 .046 -.051 -.617 .538

Verbal agitation subscale .056 .052 .088 1.073 .285 Wandering behaviour -.010 .024 -.032 -.412 .681 F(23, 182)=3.548, p<0.001 n=206

R2=0.310 Adj R2=0.222 ∆R2 p=0.016

F(11, 294)=10.107, p<0.001 n=306 R2=0.274 Adj R2=0.247

5.3.2 Activity participation models

The initial model, containing RACF characteristics did not significantly predict resident

activity participation, explaining 0.7% of the variation in activity participation (Table 5.38). Of

all the RACF characteristics, RACF size and the RACF EAT score were the only significant


variables. After removing the insignificant RACF variables, the second model still did not

significantly predict resident activity participation, explaining 0.8% of the variation in activity

participation.

Table 5.38. Activity participation regression models 1 and 2


(Constant) 4.208 2.799 1.503 .134 5.254 2.081 2.524 .012

Location Inner reg vs major city

-.519 .731 -.045 -.710 .478


-.338 .876 -.025 -.386 .700

Organisation type

Private vs charitable 1.308 .784 .111 1.669 .096

Gov vs charitable 1.398 .808 .115 1.731 .084

DT staff ratio- high vs low .029 .604 .003 .047 .962 RACF size Medium vs

large 1.730 .833 .129 2.078 .038 1.059 .692 .081 1.530 .127

Small vs large .379 .827 .028 .458 .647 -.076 .697 -.006 -.108 .914

EAT mean score 13.006 4.817 .179 2.700 .007 7.551 3.663 .105 2.061 .040 PCECAT score -.023 .018 -.076 -1.336 .182 POLIF- activity occurrence -.043 .093 -.026 -.462 .644

F(10, 358)=1.245, p=0.261 n=369

R2=0.034 Adj R2=0.007 F(3, 383)=2.074, p=0.103 n=387

R2=0.016 Adj R2=0.008

In the third model, resident demographics were added to the two RACF characteristics

(Table 5.39). This model significantly predicted resident activity participation, explaining 8.2%

of the variation in activity participation. After adjusting for the additional demographic

variables, only marital status and length of stay at the RACF were significant. After removing

the insignificant variables from model three, model four significantly predicted resident

activity participation, explaining 6.6% of the variation in activity participation. Length of stay

had the greatest influence on activity participation with residents who had lived in the RACF

for more than three years on average scoring over three points lower on activity participation

than residents who had lived in the RACF for less than one year. Residents who were not

married or in a de facto relationship were predicted to have an activity participation score

almost two points higher than those who were.




(Constant) 7.469 2.286 3.267 .001 10.529 .723 14.565 <.001 RACF size

Medium vs large 1.136 .695 .087 1.635 .103

Small vs large -.394 .707 -.029 -.558 .577

EAT mean score 6.089 3.678 .084 1.656 .099 Age 80-90 vs

<80 -.912 .873 -.083 -1.045 .297

>90 vs <80 -1.570 .985 -.130 -1.595 .112

Gender- female vs male .671 .730 .049 .918 .359

Marital status- other vs married/de facto 1.903 .724 .151 2.627 .009 1.886 .632 .149 2.983 .003

Language- other vs English -1.721 .984 -.089 -1.749 .081

Length of stay

Medium vs shortest -2.105 .724 -.192 -2.908 .004 -2.215 .713 -.202 -3.107 .002

Longest vs shortest -3.409 .754 -.300 -4.520 <.001 -3.554 .742 -.312 -4.789 <.001

F(10, 357)=4.280, p<0.001 n=368 R2=0.107 Adj R2=0.082

∆R2 p<0.001

F(3, 372)=9.849, p<0.001 n=376 R2=0.074 Adj R2=0.066

In model five resident health characteristics were added to the variables retained in model

four. This model significantly predicted resident activity participation, explaining 19.3% of the

variation in activity participation (Table 5.40). After adjusting for the other variables in the

model, marital status and the level of care required as indicated by ACFI ratings were not

significant. After removing the insignificant variables from model five, model six significantly

predicted resident activity participation, explaining 19.3% of the variation in activity

participation. Cognitive impairment and nutritional status had the greatest influence on activity

participation. Residents with severe cognitive impairment scored over five points lower on

activity participation than residents with mild cognitive impairment. The categories with a

predicted score just over three points lower were: moderate cognitive impairment versus mild

cognitive impairment; and malnourished versus normal nutritional status.




(Constant) 15.696 7.379 2.127 .034 17.150 1.177 14.576 <.001 Marital status- other vs married/de facto 1.165 .710 .090 1.642 .102

Length of stay

Medium vs shortest -1.247 .798 -.114 -1.562 .119 -1.277 .710 -.118 -1.799 .073

Longest vs shortest -1.933 .849 -.168 -2.277 .024 -1.956 .769 -.172 -2.543 .011


Moderate vs mild -3.284 .951 -.298 -3.452 .001 -3.222 .910 -.295 -3.542 <.001

Severe vs mild -4.721 1.151 -.320 -4.103 <.001 -5.198 1.070 -.353 -4.860 <.001


-4.873 1.094 -.417 -4.455 <.001 -5.060 .999 -.440 -5.063 <.001

Nutritional status


-1.697 .949 -.148 -1.789 .075 -1.810 .856 -.159 -2.114 .035

Malnourished vs normal -2.740 1.184 -.207 -2.315 .021 -3.365 1.047 -.255 -3.214 .001

Pain Mild vs none -1.802 .904 -.109 -1.994 .047 -2.266 .848 -.137 -2.673 .008 Moderate/ severe vs none

-.203 1.544 -.007 -.132 .895 -.291 1.486 -.010 -.196 .845

ACFI 1 Eating


-.173 1.522 -.013 -.114 .910


-.393 1.547 -.036 -.254 .800


-.793 1.724 -.061 -.460 .646

ACFI 2 Mobility

B (some support or assistance) vs A (independent)

-.544 1.978 -.027 -.275 .783

C (substantial support or some assistance) vs A (independent)

-1.577 1.735 -.144 -.909 .364


-2.741 1.895 -.251 -1.446 .149





1.781 5.319 .083 .335 .738


.459 5.350 .026 .086 .932


2.512 5.356 .176 .469 .639

ACFI 4 Toileting


-.648 1.954 -.047 -.332 .740


-.939 2.161 -.062 -.434 .664


-.922 2.258 -.083 -.408 .684

ACFI 5 Continence

B (some incontinence) vs. A (no incontinence)

2.255 1.863 .074 1.211 .227


1.308 1.422 .064 .920 .359


-.039 1.109 -.003 -.035 .972

ACFI 11 Medication


.670 5.312 .057 .126 .900


.769 5.302 .067 .145 .885


1.172 5.310 .104 .221 .825





-.314 .907 -.022 -.346 .730


.647 .770 .058 .840 .401


-.558 1.074 -.033 -.519 .604

F(31, 273)=3.348, p<0.001 n=305

R2=0.275 Adj R2=0.193 ∆R2 p<0.001

F(9, 307)=9.416, p<0.001 n=317 R2=0.216 Adj R2=0.193

Variables representing dementia related behaviour changes were then added to the model

already containing the resident demographic and health characteristics. Model seven

significantly predicted resident activity participation, explaining 22.9% of the variation in

activity participation (Table 5.41). Length of stay in the RACF, nutritional status and the

agitation variables were not significant. These variables were removed from the model to create

model eight which significantly predicted resident activity participation, explaining 20.5% of

the variation. Aggressive verbal behaviour was no longer significant, so a final model was

developed with this variable removed. The final model significantly predicted resident activity

participation, explaining 19.8% of the variation in activity participation. After adjusting for the

other variables in the model, cognitive impairment and depression had the greatest influence

on activity participation. Residents with severe cognitive impairment scored over five points

lower for activity participation than residents with mild impairment while those with moderate

impairment scored three points lower. Residents with severe depression scored almost four

points lower than residents with no depression. Residents who exhibited non-aggressive verbal

behaviour scored more than one point higher for activity participation than residents who did

not exhibit this behaviour.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

17

4

Tabl

e 5.

41. A

ctiv

ity p

artic

ipat

ion

regr

essi

on m

odel

s 7, 8

and

9

M

odel

7

Mod

el 8

M

odel

9

B

SE B

β

t p

B

SE B

β

t p

B

SE B

β

t p

(Con

stan

t) 15

.698

1.

428

10

.995

<.

001

14.7

45

.887

16.6

22

<.00

1 14

.739

.8

86

16

.627

<.

001

Leng

th o

f sta

y M

ediu

m v

s sho

rtest

-1

.149

.7

60

-.104

-1

.512

.1

32

Long

est v

s sho

rtest

-1

.633

.8

52

-.134

-1

.917

.0

56

Cog

nitiv

e im

pairm

ent

Mod

erat

e vs

mild

-3

.055

.9

43

-.274

-3

.238

.0

01

-2.8

42

.942

-.2

55

-3.0

17

.003

-2

.973

.9

39

-.268

-3

.167

.0

02

Seve

re v

s mild

-4

.818

1.

160

-.320

-4

.152

<.

001

-5.0

30

1.12

8 -.3

33

-4.4

59

<.00

1 -5

.156

1.

125

-.341

-4

.582

<.

001

Una

ble

to c

ompl

ete

vs m

ild

-3.7

71

1.11

9 -.3

04

-3.3

70

.001

-4

.489

1.

052

-.360

-4

.266

<.

001

-4.7

62

1.04

1 -.3

86

-4.5

76

<.00

1

Nut

ritio

nal

stat

us

At r

isk

of

mal

nutri

tion

vs

norm

al

-.720

.9

42

-.060

-.7

64

.445

M

alno

uris

hed

vs

norm

al

-1.6

07

1.20

5 -.1

12

-1.3

34

.183

Pa

in

Mild

vs n

one

-2

.136

.9

99

-.118

-2

.137

.0

34

-2.2

56

1.00

5 -.1

24

-2.2

45

.026

-2

.287

1.

003

-.126

-2

.280

.0

23

Mod

erat

e/ se

vere

vs

none

-.0

66

2.14

4 -.0

02

-.031

.9

76

.645

2.

139

.017

.3

02

.763

.7

15

2.13

5 .0

19

.335

.7

38

Dep

ress

ion

Mild

vs n

one

-1.3

65

.743

-.1

22

-1.8

37

.067

-1

.073

.7

33

-.096

-1

.463

.1

45

-1.2

85

.724

-.1

16

-1.7

75

.077

Se

vere

vs n

one

-3

.600

.9

24

-.282

-3

.897

<.

001

-3.4

85

.855

-.2

75

-4.0

76

<.00

1 -3

.864

.8

33

-.305

-4

.637

<.

001

Agg

ress

ive

verb

al b

ehav

iour

- som

e vs

no

ne

-1.8

55

.865

-.1

53

-2.1

44

.033

-1

.399

.7

14

-.115

-1

.959

.0

51

N

on-a

ggre

ssiv

e ve

rbal

beh

avio

ur-

som

e vs

non

e 1.

396

.690

.1

23

2.02

3 .0

44

1.71

9 .6

55

.151

2.

625

.009

1.

469

.632

.1

29

2.32

2 .0

21

Agg

ress

ive

agita

ted

beha

viou

r sub

scal

e -.0

45

.052

-.0

59

-.858

.3

91

Phys

ical

ly n

on-a

ggre

ssiv

e ag

itate

d be

havi

our s

ubsc

ale

.060

.0

51

.080

1.

186

.237

V

erba

l agi

tatio

n su

bsca

le

.086

.0

65

.104

1.

319

.188

F(16

, 250

)=5.

938,

p<0

.001

n=2

67

R2 =

0.27

5 A

dj R

2 =0.

229

∆R2 p

<0.0

01

F(9,

260

)=8.

712,

p<0

.001

n=2

70

R2 =

0.23

2 A

dj R

2 =0.

205

F(8,

265

)=9.

406,

p<0

.001

n=2

74

R2 =

0.22

1 A

dj R

2 =0.

198


An alternative model seven was developed including wandering behaviour. The sample

size used to develop this model was 198 compared to 267 for the equivalent model excluding

wandering behaviour. This model significantly predicted resident activity participation,

explaining 21.3% of the variation in activity participation (Table 5.42). A final model

excluding the insignificant variables from the previous model, predicted resident activity

participation, explaining 15.8% of the variation in activity participation. Similar to the model

excluding wandering behaviour, cognitive impairment and depression had the greatest

influence on activity participation. After adjusting for the other variables in the model, the

categories with predicted participation scores over four points lower were: severe versus mild

cognitive impairment and severe depression versus no depression. Residents who exhibited

aggressive verbal behaviour scored two points lower for activity participation than residents

who did not exhibit the behaviour. On average, for every ten-point increase in wandering

behaviour score, residents scored an additional point for activity participation.


Table 5.42. Activity participation regression alternative models 7 and 8 (including wandering

behaviour)




(Constant) 11.638 1.825 6.376 <.001 12.094 1.352 8.947 <.001 Length of stay

Medium vs shortest -.803 .884 -.071 -.909 .365

Longest vs shortest -.755 1.041 -.058 -.725 .469


Moderate vs none -2.796 1.050 -.248 -2.663 .008 -2.455 1.058 -.217 -2.320 .021

Severe vs none -4.972 1.388 -.312 -3.581 <.001 -4.609 1.275 -.313 -3.614 <.001

Unable to complete vs none

-3.245 1.282 -.233 -2.532 .012 -3.829 1.212 -.282 -3.158 .002

Nutritional status


-.281 1.023 -.021 -.275 .784

Malnourished vs normal -1.495 1.635 -.072 -.914 .362

Pain Mild vs none -2.305 1.246 -.121 -1.849 .066


-4.824 2.772 -.121 -1.740 .083

Depression Mild vs none -1.361 .865 -.119 -1.573 .118 -1.008 .817 -.088 -1.234 .219 Severe vs none -4.357 1.082 -.319 -4.026 <.001 -4.182 .989 -.317 -4.230 <.001

Aggressive verbal behaviour- some vs none -3.512 1.142 -.259 -3.077 .002 -1.998 .880 -.147 -2.271 .024

Non-aggressive verbal behaviour- some vs none 1.547 .836 .132 1.851 .066

Aggressive agitated behaviour subscale .028 .080 .030 .356 .722

Verbal agitation subscale .084 .074 .091 1.129 .260

Wandering behaviour .099 .034 .220 2.934 .004 .090 .030 .200 2.971 .003 F(16, 181)=4.329, p<0.001 n=198

R2=0.277 Adj R2=0.213 ∆R2 p<0.001

F(7, 218)=7.025, p<0.001 n=226 R2=0.184 Adj R2=0.158

5.3.3 Positive affect models

Initially, a positive affect model was developed with the RACF characteristics (Table

5.43). This model significantly predicted positive affect, explaining 3.6% of the variation in

positive affect. After adjusting for the other variables in the model, RACF scores on the EAT

and PCECAT and activity occurrence in the RACF were significant variables. A second model,

including only these variables, significantly predicted positive affect, explaining 3.5% of the


variation in positive affect. For every one-point increase in the EAT score, which equates to

10%, residents were predicted to increase in positive affect by approximately five points.

PCECAT scores and the POLIF activity summary score were negatively correlated with

positive affect.

Table 5.43. Positive affect regression models 1 and 2


(Constant) 12.648 1.518 8.332 <.001 13.197 1.321 9.994 <.001 Location Inner reg

vs major city

.024 .403 .004 .060 .952


.061 .483 .008 .126 .899

Organisation type

Private vs charitable

.785 .437 .119 1.798 .073

Gov vs charitable .521 .447 .077 1.165 .245

DT staff ratio- high vs low -.021 .332 -.003 -.063 .949

RACF size Medium

vs Large

.451 .464 .060 .971 .332

Small vs large -.305 .456 -.041 -.669 .504

EAT mean score 6.329 2.660 .157 2.379 .018 5.209 2.158 .129 2.414 .016 PCECAT score -.026 .010 -.149 -2.629 .009 -.025 .009 -.143 -2.696 .007 POLIF- activity occurrence -.150 .050 -.164 -2.969 .003 -.122 .046 -.136 -2.654 .008

F(10, 358)=2.365, p=0.010 n=369 R2=0.062 Adj R2=0.036

F(3, 384)=5.696, p=0.001 n=388 R2=0.043 Adj R2=0.035

In a third model, resident demographic characteristics were added to the significant

RACF variables. This model significantly predicted positive affect, explaining 5.0% of the

variation in positive affect (Table 5.44). This was a small but significant change from model

two. After adding the resident demographics, RACF PCECAT score was no longer significant.

Of the resident demographic variables, language and length of stay at the RACF were

significant. The insignificant variables were removed to develop the fourth model. This model

significantly predicted positive affect, explaining 4.6% of the variation in positive affect. The

resident characteristics had the greatest influence in this model. After adjusting for the other


variables in the model, the categories where residents were predicted to score approximately

one point lower on positive affect were: preferred language not English versus preferred

English and length of stay more than one year versus less than one year.


Model 3 Model 4


(Constant) 13.490 1.424 9.472 <.001 12.942 1.272 10.178 <.001 EAT mean score 4.374 2.226 .110 1.964 .050 2.620 2.035 .066 1.287 .199 PCECAT score -.018 .009 -.103 -1.864 .063 POLIF- activity occurrence -.100 .046 -.115 -2.164 .031 -.106 .045 -.121 -2.322 .021

Age 80-90 vs <80 .421 .495 .069 .851 .395

>90 vs <80 .326 .553 .049 .590 .555

Gender- female vs male -.499 .409 -.067 -1.221 .223

Marital status- other vs married/ de facto -.010 .410 -.001 -.025 .980

Language- other vs English -1.421 .572 -.131 -2.484 .013 -1.560 .560 -.143 -2.788 .006

Length of stay

Medium vs shortest -.855 .408 -.141 -2.095 .037 -.778 .396 -.129 -1.966 .050

Longest vs shortest -.794 .425 -.127 -1.868 .063 -.853 .411 -.136 -2.073 .039

F(10, 358)=2.923, p=0.002 n=369 R2=0.075 Adj R2=0.050

∆R2 p=0.035

F(5, 374)=4.683, p<0.001 n=380 R2=0.059 Adj R2=0.046

Adding resident health and care characteristics, model five significantly predicted

positive affect, explaining 9.5% of the variation in positive affect (Table 5.45). After adding

these variables, EAT score and resident length of stay were no longer significant. Of the new

variables added, cognitive impairment was the only significant variable. Model six, including

the three significant variables, significantly predicted positive affect, explaining 6.7% of the

variation in positive affect. After adjusting for the other variables in this model, cognitive

impairment had the greatest influence on positive affect. Compared to residents with mild

cognitive impairment, residents with moderate impairment were predicted to score one point

lower and residents with severe impairment were predicted to score two points lower on

positive affect.



Model 5 Model 6 B SE B β t p B SE

B β t p

(Constant) 20.048 4.434 4.521 <.001 15.006 .920 16.315 <.001 EAT mean score .572 2.309 .015 .248 .805

POLIF- activity occurrence -.114 .049 -.136 -2.352 .019 -.094 .044 -.111 -2.125 .034

Language- other vs English -1.572 .788 -.116 -1.995 .047 -1.190 .626 -.099 -1.901 .058

Length of stay

Medium vs shortest -.813 .449 -.138 -1.811 .071

Longest vs shortest -.232 .476 -.037 -.487 .627


Moderate vs mild -.644 .550 -.109 -1.171 .243 -.993 .537 -.163 -1.848 .065

Severe vs mild -1.537 .662 -.193 -2.323 .021 -2.009 .594 -.265 -3.380 .001


-1.275 .633 -.203 -2.013 .045 -1.947 .548 -.311 -3.553 <.001

Nutritional status


.053 .532 .009 .100 .920

Malnourished vs normal -.607 .672 -.085 -.902 .368

Pain Mild vs none -.909 .503 -.104 -1.808 .072


-.731 .887 -.049 -.825 .410

ACFI 1 Eating


.206 .868 .029 .237 .813


.823 .886 .141 .929 .354


.037 .986 .005 .037 .970



B β t p

ACFI 2 Mobility


-.131 1.137 -.012 -.115 .908


-.249 .997 -.042 -.249 .803


-.164 1.091 -.028 -.151 .880



-3.002 3.035 -.260 -.989 .323


-3.951 3.051 -.414 -1.295 .196


-3.122 3.057 -.407 -1.021 .308

ACFI 4 Toileting


1.749 1.115 .235 1.569 .118


.929 1.236 .114 .752 .453


1.233 1.283 .205 .961 .337

ACFI 5 Continence


.961 1.066 .058 .901 .368


.512 .811 .046 .632 .528


-.031 .624 -.005 -.050 .960



B β t p

ACFI 11 Medication


-3.100 3.013 -.493 -1.029 .304


-2.481 3.016 -.401 -.823 .411


-2.978 3.019 -.488 -.986 .325



-.711 .516 -.092 -1.377 .170


-.556 .438 -.093 -1.270 .205


.024 .620 .003 .038 .970

F(33, 273)=1.978, p=0.002 n=307

R2=0.193 Adj R2=0.095 ∆R2 p=0.020

F(5, 348)=6.074, p<0.001 n=354 R2=0.080 Adj R2=0.067

A seventh model was developed adding the variables related to dementia related

behaviour changes to the three significant variables from the previous models. Model seven

significantly predicted positive affect, explaining 22.6% of the variation in positive affect

(Table 5.46). No RACF or resident demographic variables retained significance in this model.

Cognitive impairment, depression and aggressive agitated behaviour were significant variables

in the model. After removing the insignificant variables, model eight significantly predicted

positive affect, explaining 21.8% of the variation in positive affect. In this model, cognitive

impairment was no longer significant. The final model, after removing cognitive impairment,

significantly predicted positive affect, explaining 21.5% of the variation in positive affect. In

this model, residents with mild depression scored more than one point lower and residents with

severe depression scored almost three points lower on positive affect than residents with no

depression. After adjusting for depression, for every 11-point increase in aggressive agitated

behaviour scores, residents scored one point lower on positive affect.

Cha

pter

5: P

hase

2 F

indi

ngs-

Sec

onda

ry q

uant

itativ

e an

alys

is o

f Aus

tralia

n Q

ualit

y of

Life

Stu

dy d

ata

18

2

Tabl

e 5.

46. P

ositi

ve a

ffec

t reg

ress

ion

mod

els 7

, 8 a

nd 9

M

odel

7

Mod

el 8

M

odel

9

B

SE

B

β t

p B

SE

B

β

t p

B

SE

B

β t

p

(Con

stan

t) 15

.832

.9

21

17

.192

<.

001

15.0

10

.490

30.6

33

<.00

1 14

.328

.3

20

44

.790

<.

001

Act

ivity

occ

urre

nce

(PO

LIF)

-.0

75

.044

-.0

91

-1.6

98

.091

La

ngua

ge- o

ther

vs E

nglis

h -.7

48

.642

-.0

61

-1.1

64

.245

C

ogni

tive

impa

irmen

t M

oder

ate

vs m

ild

-.826

.4

94

-.139

-1

.672

.0

96

-.723

.4

86

-.123

-1

.488

.1

38

Se

vere

vs m

ild

-1.2

79

.571

-.1

73

-2.2

38

.026

-1

.071

.5

52

-.144

-1

.941

.0

53

U

nabl

e to

com

plet

e vs

mild

-.8

97

.548

-.1

41

-1.6

37

.103

-.8

43

.516

-.1

34

-1.6

34

.103

Dep

ress

ion

Mild

vs n

one

-1

.125

.3

68

-.191

-3

.054

.0

02

-1.0

31

.350

-.1

77

-2.9

42

.004

-1

.026

.3

35

-.175

-3

.057

.0

02

Seve

re v

s non

e -2

.865

.4

47

-.436

-6

.414

<.

001

-2.4

93

.402

-.3

83

-6.2

02

<.00

1 -2

.572

.3

82

-.396

-6

.737

<.

001

Agg

ress

ive

verb

al b

ehav

iour

- som

e vs

no

ne

-.202

.4

22

-.032

-.4

78

.633

N

on-a

ggre

ssiv

e ve

rbal

beh

avio

ur- s

ome

vs

none

.0

23

.342

.0

04

.067

.9

47

Agg

ress

ive

agita

ted

beha

viou

r sub

scal

e -.0

62

.024

-.1

68

-2.6

04

.010

-.0

81

.019

-.2

30

-4.3

32

<.00

1 -.0

87

.017

-.2

50

-5.0

50

<.00

1

Phys

ical

ly n

on-a

ggre

ssiv

e ag

itate

d be

havi

our s

ubsc

ale

.040

.0

25

.100

1.

588

.113

V

erba

l agi

tatio

n su

bsca

le

-.002

.0

34

-.005

-.0

65

.948

F(12

, 287

)=8.

271,

p<0

.001

n=3

00

R2 =

0.25

7 A

dj R

2 =0.

226

∆R2 p

<0.0

01

F(6,

315

)=15

.945

, p<0

.001

n=3

22

R2 =

0.23

3 A

dj R

2 =0.

218

F(3,

344

)=32

.741

, p<0

.001

n=3

48

R2 =

0.22

2 A

dj R

2 =0.

215


An alternative model seven was developed, including wandering behaviour and

excluding physically non-aggressive agitated behaviour. The sample size used to develop this

model was 217 compared to 300 for the equivalent model excluding wandering behaviour. This

model significantly predicted positive affect, explaining 15.5% of the variation in positive

affect (Table 5.47). The only significant variable in this model was depression. A final model

with depression alone significantly predicted positive affect, explaining 16.4% of the variation

in positive affect. Compared to residents with no depression, residents with severe depression

were predicted to score three points lower while residents with mild depression were predicted

to score over one point lower.

Table 5.47. Positive affect alternative regression models 7 and 8 (including wandering

behaviour)



B SE B β t p B SE B

β t p

(Constant) 14.376 1.097 13.102 <.001 13.353 .264 50.580 <.001 POLIF -activity occurrence -.043 .052 -.054 -.818 .415

Language- other vs English .079 .771 .007 .103 .918


Moderate vs mild -.863 .519 -.158 -1.664 .098

Severe vs mild -.935 .640 -.130 -1.461 .146


-.456 .613 -.069 -.744 .458

Depression Mild vs none -1.359 .413 -.243 -3.295 .001 -1.313 .342 -.224 -3.837 <.001

Severe vs none -2.909 .507 -.453 -5.734 <.001 -3.113 .379 -.479 -8.212 <.001

Aggressive verbal behaviour- some vs none -.590 .523 -.091 -1.129 .260

Non-aggressive verbal behaviour- some vs none -.057 .398 -.010 -.143 .886

Aggressive agitated behaviour subscale -.025 .034 -.060 -.751 .453

Verbal agitation subscale .040 .036 .092 1.128 .261 Wandering behaviour .012 .015 .057 .804 .422 F(12, 204)=4.306, p<0.001 n=217

R2=0.202 Adj R2=0.155 ∆R2 p<0.001

F(2, 345)=33.948, p<0.001 n=348 R2=0.164 Adj R2=0.160


5.3.4 Negative affect models

An initial model for negative affect was developed containing the RACF characteristics

(Table 5.48). This model did not significantly predict resident negative affect, explaining 0.8%

of the variation in negative affect. A second model was developed containing the resident

demographic characteristics (Table 5.49). This model also did not significantly predict resident

negative affect, explaining 0.2% of the variation in negative affect.

Table 5.48. Negative affect regression model 1

Model 1 B SE B β t p

(Constant) 8.809 1.708 5.158 <.001 Location Inner reg vs major city -.075 .455 -.010 -.164 .870

Outer reg vs major city .831 .558 .099 1.490 .137

Organisation type Private vs charitable -.062 .488 -.009 -.128 .898

Gov vs charitable -.495 .505 -.066 -.982 .327

DT staff ratio- high vs low -.145 .375 -.021 -.386 .699 RACF size Medium vs large -.493 .518 -.060 -.952 .342

Small vs large .333 .518 .040 .644 .520 EAT mean score -2.441 3.053 -.055 -.799 .425

PCECAT score -.012 .011 -.062 -1.052 .293

POLIF- activity occurrence .104 .057 .104 1.826 .069

F(10, 351)=1.278, p=0.241 n=362 R2=0.035 Adj R2=0.008


Table 5.49. Negative affect regression model 2

Model 2

B SE B β t p

(Constant) 8.775 .659 13.306 <.001 Age 80-90 vs <80 -.945 .582 -.137 -1.624 .105

>90 vs <80 -1.261 .649 -.168 -1.944 .053 Gender- female vs male .480 .478 .056 1.005 .315 Marital Status- other vs married/ de facto -.233 .482 -.029 -.482 .630 Language- other vs English .389 .650 .032 .599 .550 Length of stay Medium vs shortest -.163 .478 -.024 -.341 .734

Longest vs shortest -.007 .498 -.001 -.015 .988 F(7, 355)=0.904, p=0.503 n=363

R2=0.018 Adj R2=-0.002

A third model was developed containing resident health and care characteristics (Table

5.50). The model significantly predicted negative affect, explaining 4.5% of the variation in

negative affect. After adjusting for the other variables in the model, pain and continence were

significant variables. After removing the insignificant variables from model three, model four

significantly predicted negative affect, explaining 5.7% of the variation in negative affect.

Residents with moderate to severe pain were predicted to score three points higher than

residents with no pain while residents with the most frequent incontinence were predicted to

score over one point higher than residents who did not experience incontinence.

Table 5.50. Negative affect regression models 3 and 4


(Constant) 7.424 4.913 1.511 .132 6.690 .487 13.729 <.001 Cognitive impairment

Moderate vs mild .179 .646 .026 .278 .782

Severe vs mild .822 .777 .089 1.058 .291


-.060 .736 -.008 -.082 .935

Nutritional status


.572 .622 .081 .919 .359

Malnourished vs normal 1.293 .787 .159 1.644 .101



Pain Mild vs none .139 .607 .014 .230 .819 -.246 .535 -.025 -.460 .646 Moderate/ severe vs none

2.728 1.043 .158 2.615 .009 3.022 .897 .182 3.368 .001

ACFI 1 Eating


-.221 1.025 -.027 -.216 .829


-1.100 1.039 -.164 -1.058 .291


-.944 1.167 -.115 -.809 .419

ACFI 2 Mobility


.826 1.335 .065 .619 .537


.644 1.149 .095 .560 .576


.795 1.250 .117 .636 .525



-.949 3.576 -.071 -.266 .791


-2.406 3.599 -.216 -.668 .504


-1.153 3.608 -.130 -.320 .750



ACFI 4 Toileting


.985 1.311 .113 .751 .453


1.005 1.443 .108 .696 .487


.826 1.504 .119 .549 .583

ACFI 5 Continence

B (some incontinence) vs A (independent)

1.661 1.247 .088 1.332 .184 1.135 1.137 .058 .998 .319

C (frequent incontinence) vs A (independent)

.673 .948 .053 .710 .478 .157 .834 .012 .188 .851

D (most frequent incontinence) vs A (independent)

1.541 .729 .197 2.114 .035 1.530 .525 .195 2.915 .004

ACFI 11 Medication


-1.603 3.570 -.220 -.449 .654


-.516 3.560 -.073 -.145 .885


-1.133 3.571 -.161 -.317 .751



-.636 .609 -.071 -1.044 .298


.363 .510 .053 .712 .477


-.581 .728 -.055 -.798 .425

F(28, 277)=1.516, p=0.050 n=306

R2=0.133 Adj R2=0.045 F(5, 323)=4.988, p<0.001 n=329

R2=0.072 Adj R2=0.057


A fifth model was developed adding the variables related to behavioural and

psychological symptoms of dementia to pain and continence. Model five significantly

predicted negative affect, explaining 58.2% of the variation in negative affect (Table 5.51).

This was a large increase from the previous model, including pain and incontinence which

explained less than 6% of the variation in negative affect. Pain and incontinence were no longer

significant in this model. After removing the insignificant variables from model five, model

six significantly predicted negative affect, explaining 55.6% of the variation in negative affect.

After adjusting for the other variables in the model, depression had the greatest influence on

negative affect. Compared to residents without depression, residents with severe depression

scored almost three points higher and residents with mild depression scored one point higher

on negative affect. Residents who exhibited aggressive verbal behaviour scored more than one

point higher on negative affect than residents who did not exhibit the behaviour. All three types

of agitated behaviour were positively correlated with negative affect, with verbal agitation

having the greatest influence of the three.


Table 5.51. Negative affect regression models 5 and 6

Model 5 Model 6

B SE B

β t p B SE B

β t p

(Constant) 2.586 .458 5.644 <.001 3.132 .351 8.927 <.001 Pain Pain- mild vs

none -.465 .418 -.045 -1.113 .267

Pain- moderate/ severe vs none

.744 .850 .035 .876 .382

ACFI 5 Continence


.966 .809 .051 1.194 .234


-.245 .617 -.018 -.398 .691


.581 .386 .075 1.506 .133

Depression Mild vs none .913 .321 .135 2.841 .005 1.026 .308 .147 3.327 .001

Severe vs none 2.424 .398 .318 6.091 <.001 2.595 .372 .339 6.967 <.001

Aggressive verbal behaviour- some vs none 1.311 .374 .176 3.500 .001 1.485 .351 .194 4.232 <.001

Non-aggressive verbal behaviour- some vs none .049 .302 .007 .161 .872

Aggressive agitated behaviour subscale .061 .021 .138 2.912 .004 .045 .018 .105 2.453 .015

Physically non-aggressive agitated behaviour subscale .089 .022 .195 4.015 <.001 .097 .021 .214 4.658 <.001

Verbal agitation subscale .125 .028 .252 4.470 <.001 .118 .026 .234 4.606 <.001

F(12, 263)=32.848, p<0.001 n=276 R2=0.600 Adj R2=0.582

∆R2 p<0.001

F(6, 324)=69.760, p<0.001 n=331 R2=0.564 Adj R2=0.556

An alternative model five was developed including wandering behaviour and excluding

physically non-aggressive agitated behaviour. The sample size used to develop this model was

198 compared to 276 for the equivalent model excluding wandering behaviour. This model,

significantly predicted negative affect, explaining 56.0% of the variation in negative affect

(Table 5.52). Pain and continence were no longer significant in this model. After removing the

insignificant variables from model five, model six significantly predicted negative affect,

explaining 56.4% of the variation in negative affect. After adjusting for the other variables in


this model, depression had the greatest influence on negative affect. Residents with severe

depression scored almost three points higher on negative affect than residents with no

depression. The categories predicted to score over one point higher on negative affect were:

mild depression versus no depression and exhibiting aggressive verbal behaviour versus not

exhibiting this behaviour. Aggressive agitated behaviour, verbal agitation and wandering

behaviour all had a positive correlation with negative affect.

Table 5.52. Negative affect alternative regression models 5 and 6 (including wandering

behaviour)



B SE B β t p B SE B

β t p

(Constant) 1.783 .611 2.919 .004 2.366 .528 4.484 <.001 Pain Mild vs none -.521 .519 -.049 -1.002 .318


-.626 1.113 -.027 -.562 .575

ACFI 5 Continence


.868 .843 .053 1.031 .304


-.599 .662 -.049 -.905 .367


.773 .406 .111 1.905 .058

Depression Mild vs none 1.005 .361 .153 2.782 .006 1.363 .349 .195 3.909 <.001

Severe vs none 2.479 .451 .321 5.495 <.001 2.774 .427 .353 6.493 <.001

Aggressive verbal behaviour- some vs none 1.043 .477 .134 2.187 .030 1.529 .432 .187 3.540 <.001

Non-aggressive verbal behaviour- some vs none .106 .363 .016 .291 .771

Aggressive agitated behaviour subscale .096 .033 .179 2.916 .004 .066 .030 .122 2.235 .026

Verbal agitation subscale .167 .031 .328 5.414 <.001 .175 .027 .334 6.411 <.001

Wandering behaviour .028 .014 .111 2.017 .045 .027 .013 .100 1.999 .047 F(12, 185)=21.864, p<0.001 n=198

R2=0.586 Adj R2=0.560 ∆R2 p<0.001

F(6, 227)=51.271, p<0.001 n=234 R2=0.575 Adj R2=0.564


5.4 SUMMARY

The aims of this phase of the study were to assess the QoL of people with dementia living

in RACFs as measured by the AAIQOL and to explore which RACF-level and resident

characteristics were associated with QoL. The findings were reported in full in this chapter. To

summarise, many residents had the opportunity to participate in several activities, on average

half of the 15 activities specified in the AAIQOL. Residents participated in a mean of six

activities with a mean activity participation score of ten, suggesting that they participated in

some activities many times each week. Most activities that were participated in were enjoyed

by the residents. Staff reported a high level of positive affect over the previous two weeks

among residents with a mean score of 12 out of a possible 15. On average, residents scored

eight out of 15 for negative affect.

In the final stage of analysing this data, hierarchical multiple linear regression models

were developed for the AAIQOL summary scores for activity opportunity and participation

and positive and negative affect. The final activity opportunity model included significant

effects of cognitive impairment, nutritional status, continence, depression, non-aggressive

verbal behaviour and aggressive agitated behaviour. More severe cognitive impairment and

depression, poorer nutritional status, more frequent incontinence and aggressive agitated

behaviour and not exhibiting any non-aggressive verbal behaviour were associated with fewer

activity opportunities. In the alternative model including wandering behaviour, aggressive

agitated behaviour was no longer a significant variable. RACF level variables did not

independently predict activity opportunities once the variables representing dementia related

behaviour changes were added to the model. The final model for activity participation included

significant effects of cognitive impairment, pain, depression and non-aggressive verbal

behaviour. More severe cognitive impairment and depression, pain and no non-aggressive

verbal behaviour were associated with less frequent activity participation. When wandering

behaviour was included, pain and non-aggressive verbal behaviour were no longer significant

variables while aggressive verbal behaviour and wandering behaviour were significant.

Exhibiting aggressive verbal behaviour and more intense wandering behaviour were associated

with less frequent activity participation. RACF level variables did not independently predict

activity participation once resident demographics were added to the model. The final activity

opportunity models explained approximately one-quarter of the variation in opportunities while

the final activity participation models explained less than one-fifth of the variation in

participation. This model explained more of the variation in activity participation than a


previous study of US RACF residents with dementia where cognitive impairment, ADLs,

depression, agitation and pain predicted less than 12% of the variation in activity participation

(Sloane et al., 2005). In studies of human health and behaviour it is common and regarded as

acceptable to explain less than 50% of the variation and this has been found in other studies of

QoL, activity participation and social engagement among people living with dementia (Beer et

al., 2010; Cohen-Mansfield, Marx, Regier, & Dakheel-Ali, 2009; Hoe et al., 2006; Kang, 2012;

Sloane et al., 2005).

The final model for positive affect only included two significant variables- depression

and aggressive agitated behaviour. More severe depression and more frequent aggressive

agitated behaviour were associated with lower positive affect. When wandering behaviour was

included, depression was the only significant predictor. These models explained approximately

one-fifth of the variation in positive affect. Similarly, depression was significant in the final

negative affect model. Other significant variables included aggressive verbal behaviour,

aggressive agitated behaviour, physically non-aggressive agitated behaviour and verbal

agitation. More severe depression, exhibiting aggressive verbal behaviour and more frequent

agitated behaviour were associated with higher negative affect. When wandering behaviour

was included in the model it was significant and physically non-aggressive agitated behaviour

was no longer significant. More intense wandering behaviour was also associated with higher

negative affect. Over half of the variation in resident negative affect was explained by these

final models. These models for negative affect predicted a large amount of the variation. RACF

level variables did not independently predict positive affect once dementia related behaviour

change variables were added to the model while the RACF level variables did not

independently predict negative affect, even in the initial model.

The next chapter will continue to explore activity among RACF resident with dementia.

The findings of the Phase 3 qualitative study focusing on ‘meaningful activity’ in this context

will be reported.

Chapter 6: Phase 3 Findings- Qualitative study 193

Chapter 6: Phase 3 Findings- Qualitative study

This chapter reports the findings of the qualitative study. Interviews were held with

RACF residents with dementia and their family members. RACF activity and care staff

participated in focus group interviews. The purpose of this qualitative study was to build on

the findings of the literature-based concept analysis and explore the concept of ‘meaningful

activity’ in the specific context of the lives of people living with dementia in RACFs. A detailed

description of the methods used can be found in Chapter 3. The first section of this chapter

describes the characteristics of the participating RACFs, residents, family members and staff.

This is followed by the findings from the qualitative individual and focus group interviews.

The data was categorised using Walker and Avant’s (2011) framework of defining attributes,

antecedents and consequences of the concept, with the analysis guided by the findings of the

Phase 1 literature-based concept analysis. The findings presented in this chapter are the

participants’ perceptions of the key characteristics of ‘meaningful activity’, the conditions or

incidents that need to be in place for participation in ‘meaningful activity’ and the outcomes of

participation in ‘meaningful activity’.

6.1 PARTICIPANT CHARACTERISTICS

Across four RACFs, 19 residents and 17 family members participated in this qualitative

study (Table 6.1). One focus group was held in each RACF with a total of 15 staff across the

four RACFs.

Table 6.1. Participants in each RACF

RACF Residents (n) Family members (n) Staff (n)

1 5 5 6

2 5 4 4

3 3 2 2

4 6 6 3


The sites for this study included four RACFs: two RACFs in southern Tasmania, one in

northern Tasmania and one in Victoria. The characteristics of the four participating RACFs are

presented in Table 6.2. All participating RACFs were located in inner regional areas; most were

large with 75 or more beds and half were community-based organisations. On average, the

RACFs reported that about one-third of their residents had dementia.

The Environmental Audit Tool (EAT) and the Person-Centred Environment and Care

Assessment Tool (PCECAT) were used to assess the suitability of the RACF environment for

residents with dementia and the culture and implementation of person-centred care

respectively. Across the four RACFs the mean EAT score was 0.56 (range 0.53-0.59), meaning

they obtained approximately half of the available points on the EAT. The mean score for

person-centred care culture and care implementation was 93 (range 83-98) out of a maximum

possible score of 132.

Table 6.2. RACF characteristics (n=4)

Characteristic Mean (SD) n

Organisation type Religious/charitable 1

Private/for-profit 1

Government/community 2

Location Major city 0

Inner regional 4

Outer regional 0

RACF size Small (25-49 beds) 0

Medium (50-74 beds) 1

Large (75+ beds) 3

Percent of residents with dementia 33.42 (12.24)

EAT 0.56 (0.03)

Skewness=-0.596

PCECAT Domain 1- Organisational culture (/84)

58.75 (5.32)

Skewness=-1.667

Domain 2- Care (/48) 34.25 (2.22)

Skewness=0.482

Total (/132) 93.00 (6.78)

Skewness=-1.795


Across the four RACFs, 33 family members of potential resident participants were

contacted about the study and invited to provide consent for their own participation and proxy

consent for the resident’s participation. Of those family members, eight decided not to provide

consent for participation. The main concern of these family members was the burden of

participation for the resident in relation to poor health and cognitive impairment. Of the 25

residents with proxy consent for participation, six were excluded from the study after

completing the 3MS cognitive assessment (Teng & Chui, 1987) and obtaining a score lower

than 50, indicating severe cognitive impairment. All remaining residents with proxy consent

from a family member agreed to participate. None of the participating residents demonstrated

capacity to provide informed consent by satisfactorily completing the ESC (Resnick et al.,

2007). Therefore, the proxy consents of their legally authorised representatives were used.

Across the four RACFs, 19 residents participated in the study (Table 6.3). Most of the

residents were between 80 and 90 years of age, female, not married or in a de facto relationship

and all preferred to speak English. Less than one-quarter of the residents lived in a dementia-

specific area and approximately half had lived in the RACF for between one and three years.

Table 6.3. Resident demographic characteristics (n=19)


Age (years) <80 0 (0.0)

80-90 14 (73.7)

>90 5 (26.3)

Gender Male 3 (15.8)

Female 16 (84.2)

Marital status Married/de facto 5 (26.3)

Separated/divorced/widowed/single 14 (73.7)

Preferred language English 19 (100.0)

Other 0 (0.0)


Yes 0 (0.0)

No 19 (100.0)

Care type

Dementia-specific unit 4 (21.1)

Integrated area 15 (78.9)


<1 4 (21.1)

1-3 10 (52.6)

>3 5 (26.3)


To be eligible to participate in the study, residents were required to have mild or moderate

dementia, as indicated by a score between 50 and 77 on the Modified Mini-Mental State

examination (3MS). Using the 3MS, a lower score reflects more severe cognitive impairment.

The mean 3MS score of participating residents was 59.4 (SD=9.6, skewness=0.764) with

scores across the inclusion range from 50 to 77.

Data was also collected about the health characteristics of residents and the level and

types of care they received (Table 6.4). Almost half of the residents were either at risk of

malnutrition or malnourished while most residents did not exhibit observable signs of pain.

RACF-held records of assessments using the Aged Care Funding Instrument (ACFI) were used

to indicate the care needs of residents. Residents receive a rating between A and D for each

care need in the ACFI. A rating of A indicates independence with supervision and physical

assistance increasingly required up to a rating of D indicating the highest level of physical

assistance. According to the ACFI, almost all participating residents required assistance with

eating, mobility, personal hygiene, toileting and medication with only 5-10% independent in

each of these aspects of care. Over three-quarters required assistance with continence.


Table 6.4. Resident health and care characteristics (n=19)

Variable n %

Nutritional status

Normal 10 52.6

At risk of malnutrition 7 36.8

Malnourished 2 10.5

Observed pain None 16 84.2

Mild 3 15.8

Moderate/severe 0 0.0

ACFI 1 Eating A- Independent in readiness to eat and eating 1 5.3

B- Supervision required for readiness to eat and/or eating 5 26.3

C- Physical assistance required for readiness to eat or eating 12 63.2

D- Physical assistance required for readiness to eat and eating 1 5.3

ACFI 2 Mobility

A- Independent in transfers and locomotion 2 10.5


1 5.3


13 68.4


3 15.8


A- Independent in dressing, washing and grooming 1 5.3

B- Supervision required for dressing, washing or grooming 1 5.3


3 15.8


14 73.7

ACFI 4 Toileting

A- Independent in use of toilet and toilet completion 1 5.3


5 26.3


2 10.5


11 57.9


Variable n %

ACFI 5 Continence


4 21.1


0 0.0


2 10.5

D- >3 episodes per day urinary incontinence or passing of urine during scheduled toileting or >4 episodes per week of faecal incontinence or passing faeces during scheduled toileting

13 68.4

ACFI 11 Medication

A- No medication or self-managed medication 1 5.3

B- Application of patches at least weekly, but less frequently than daily or needs assistance for <6 minutes per 24 hour period with daily medications

12 63.2

C- Needs assistance for between 6-11 minutes per 24 hour period with daily medications

6 31.6

D- Requires >11 minutes of assistance with medication/ day or daily administration of subcutaneous, intramuscular or intravenous drug

0 0.0


A- No procedures (score of 0) 6 31.6

B- score of 1-4 1 5.3

C- score of 5-9 8 42.1

D- Multiple complex health procedures (score of 10 or more) 4 21.1

Staff reported on a range of dementia related behaviour changes observed in the residents.

Based on data reported using the Collateral Source Geriatric Depression Scale (CS-GDS) and

the Verbal Behaviour Scale (VBS), half of the residents had depression and exhibited verbal

behaviour (Table 6.5). Non-aggressive verbal behaviour was more common than aggressive

verbal behaviour. Based on staff report using the Cohen Mansfield Agitation Inventory

(CMAI), the mean frequency of overall agitation was 45 out of a maximum possible score of

203 (Table 6.6). Participating residents had a mean wandering behaviour score of 36 out of a

maximum possible score of 80 using the Revised Algase Wandering Scale- Long Term Care

Version (RAWS).


Table 6.5. Dementia related behaviour changes among residents (n=19)

Variable n %

Staff-assessed depression None 9 47.4

Mild 6 31.6

Severe 4 21.1

Verbal behaviour

Overall None exhibited 9 47.4

Some exhibited 10 52.6

Aggressive None exhibited 15 78.9


Non-aggressive None exhibited 9 47.4


Table 6.6. Dementia related behaviour changes among residents (continuous variables)

Variable n Median Mean (SD)

Min- Max Skewness

Agitation Overall (/203) 19 43.0 44.7 (12.6)

29- 71 0.875

Aggressive behaviour (/63) 19 9.0 - 9- 24 3.600

Physically non-aggressive behaviour (/42)

19 9.0 11.6 (5.4) 6- 25 1.036

Verbally agitated behaviour (/35)

19 11.0 11.4 (4.6) 5- 25 1.314

Wandering behaviour (/80) 17 34.0 35.8 (8.2) 25- 57 1.581

Staff reported on resident activity opportunities, participation and enjoyment using the

Activity and Affect Indicators of Quality of Life (AAIQOL). The data is presented in Table 6.7

in descending order of activity opportunity to facilitate comparison. All residents had the

opportunity to go outside, get together with family or friends and listen to the radio or watch

television. Most of the residents did participate in these activities and using the AAIQOL staff

reported that all those who did seemed to enjoy them. There were six additional activities that

more than three-quarters of the residents had the opportunity to participate in: 1) being with

animals; 2) reading; 3) exercising or watching sports; 4) playing games or doing puzzles; 5)

going for a ride in the car or bus; and 6) completing a difficult task (any activity identified by


the respondent as difficult for the individual resident concerned). Most of the residents who

had the opportunity to participate in these activities did so except for playing games with only

half of the residents who had the opportunity to participate reported to have played games in

the previous two weeks. Just over half of the residents who participated in a difficult task

enjoyed it. A higher proportion of residents enjoyed the other activities. Fewer residents had

the opportunity to go to movies, entertainment or religious services or participate in craft

activities. While most of the residents who had the opportunity to go to entertainment did so,

fewer than two-thirds participated in craft activities and fewer than half went to religious

services. Approximately half of the residents had the opportunity to talk on the phone,

participate in gardening or go shopping. While all residents with the opportunity to talk on the

phone did so, approximately half of those with the opportunity to garden or go shopping did so

infrequently.


Table 6.7. Activity indicators of quality of life (AAIQOL)- Individual items (n=19)..

Activity type Opportunity Participation [n (%)] Enjoy

n % None Few Often n %

Being outside, going for walks, enjoying nature

19 100.0 1 (5.3) 13 (68.4) 5 (26.3) 18 100.0

Getting together with family/friends

19 100.0 0 (0.0) 9 (47.4) 10 (52.6) 19 100.0

Listening to radio, tapes or watching TV

19 100.0 2 (10.5) 11 (57.9) 6 (31.6) 17 100.0

Being with or watching pets or animals

17 89.5 2 (11.8) 9 (52.9) 6 (35.3) 15 100.0

Reading or having stories read to him/her

17 89.5 5 (29.4) 9 (52.9) 3 (17.6) 12 100.0

Exercising, playing or watching sports

16 84.2 4 (25.0) 6 (37.5) 6 (37.5) 10 83.3

Playing games or cards, doing crosswords, puzzles

16 84.2 8 (50.0) 3 (18.8) 5 (31.3) 7 87.5

Going for a ride in the car, train or bus

15 78.9 2 (13.3) 11 (73.3) 2 (13.3) 13 100.0

Completing a difficult task

15 78.9 3 (20.0) 11 (73.3) 1 (6.7) 7 58.3

Going to movies, museums, entertainment

14 73.7 1 (7.1) 11 (78.6) 2 (14.3) 13 100.0

Doing handiwork or crafts

14 73.7 5 (35.7) 6 (42.9) 3 (21.4) 7 77.8

Going to church, religious events

13 68.4 8 (61.5) 4 (30.8) 1 (7.7) 5 100.0

Talking to family/ friends on telephone

11 57.9 0 (0.0) 6 (54.5) 5 (45.5) 11 100.0

Gardening, plant care, indoors or outdoors

10 52.6 6 (60.0) 4 (40.0) 0 (0.0) 4 100.0

Going shopping for groceries, clothes etc.

8 42.1 4 (44.4) 5 (55.6) 0 (0.0) 4 80.0

Total scores were calculated for the AAIQOL scales (Table 6.8). On average residents

had the opportunity to participate in 12 of the 15 specified activities and enjoyed nine of those

activities. The mean score for activity participation was 12 out of a maximum possible score

of 30. Positive affect was observed more frequently than negative affect with mean scores of

12 and seven respectively, out of maximum possible scores of 15.


Table 6.8. Activity and affect indicators of quality of life (AAIQOL)- Scale scores (n=19)..


Opportunity (0-15) 19 11.7 (2.4) -.180 7-15

Participation (0-30) 19 12.0 (3.1) -.141 6-17

Enjoyment (0-15) 19 8.5 (1.7) -.326 5-12

Positive affect (3-15) 19 12.7 (2.7) -1.208 6-15

Negative affect (3-15) 19 7.2 (2.8) .558 3-14

For 17 of the participating residents, a family member also participated in the study

(Table 6.9). Most of the participating family members were female, over 60 years of age and

the adult child of the resident. The most common way to maintain contact with the resident was

visiting the RACF and typically visitors came weekly or several times each week. The

participating family members spent a median of 10.0 hours (IQR=22.5, range=0-600 hours)

with the resident in the previous month.


Table 6.9. Family member demographic characteristics (n=17)


Gender Female 11 (64.7)

Male 6 (35.3)

Age (years) <40 0 (0.0)

41-60 4 (23.5)

61-80 9 (52.9)

>80 4 (23.5)

State QLD 1 (5.9)

SA 1 (5.9)

TAS 9 (52.9)

VIC 6 (35.3)

Relationship to resident Spouse 4 (23.5)

Child 12 (70.6)

Niece 1 (5.9)

Frequency of contact Every day 3 (17.6)

Several times a week 8 (47.1)

Weekly 4 (23.5)

Fortnightly 1 (5.9)

Monthly 1 (5.9)

Primary method of contact

Phone calls with resident 1 (5.9)

Visits to RACF 14 (82.4)

Calls to RACF about resident’s wellbeing 1 (5.9)

Also lives at the RACF 1 (5.9)

Focus groups with staff were held in each RACF with a total of 15 staff members across

all RACFs. Most participating staff members were female and between 41 and 60 years of age

(Table 6.10). Half had a TAFE certificate or diploma as their highest level of education. Most

of the participating staff members worked in an activity assistant role and reported that they

always or often communicated with people with dementia in that role. Two-thirds of staff had

worked in aged care for at least six years and one-third had some personal experience caring

for a person with dementia. Almost all staff had undertaken dementia education, most

commonly self-directed learning (for example online browsing, reading articles or books) or

RACF in-services.


Table 6.10. Staff demographic characteristics (n=15)


Gender Female 13 (86.7)

Male 2 (13.3)

Age (years) <20 0 (0.0)

21-40 3 (20.0)

41-60 11 (73.3)

>61 1 (6.7)

Highest level of education High school education- Year 10 (or equivalent) 3 (20.0)

High school education- Year 12 (or equivalent) 2 (13.3)

TAFE certificate or diploma 8 (53.3)

Undergraduate university degree 0 (0.0)

Postgraduate university degree 2 (13.3)

Current position Personal care assistant 2 (13.3)

Nurse/ Nursing student 2 (13.3)

Diversional therapist/ Activity assistant 10 (66.7)

Dementia support worker 1 (6.7)

Communication with people with dementia in current role

Never 0 (0.0)

Sometimes 2 (13.3)

Often 4 (26.7)

Always 9 (60.0)

Years worked in aged care <1 1 (6.7)

1-2 3 (20.0)

3-5 1 (6.7)

6-10 3 (20.0)

>10 7 (46.7)

Personal experience caring for a person with dementia

Yes 5 (33.3)

No 10 (66.7)

Dementia education Yes 13 (86.7)

No 2 (13.3)



Type of dementia education Included in undergraduate course 2 (13.3)

Formal postgraduate course 2 (13.3)

Dementia-specific conference 5 (33.3)

Online course 5 (33.3)

Self-directed learning 7 (46.7)

RACF in-service course 11 (73.3)

6.2 QUALITATIVE FINDINGS

As described in Chapter 3, the themes identified in the literature-based concept analysis

were used to guide the analysis of the qualitative data. A random selection of interview and

focus group transcripts were coded independently by the researcher and a second coder. Using

a coding comparison query, a kappa coefficient above 0.60 was obtained indicating that coding

the remaining transcripts by one coder was a reliable approach (Burla et al., 2008).

The findings of the qualitative study are presented below, starting with the defining

attributes of ‘meaningful activity’, followed by the antecedents and consequences of

‘meaningful activity’. The five defining attributes of ‘meaningful activity’ identified in the

literature-based concept analysis include: being suited to the individual, engaging, enjoyable,

goal-related and linked to identity. More detail about each of these themes as drawn from the

literature can be found in Chapter 4. The defining attributes of ‘meaningful activity’ identified

in the qualitative study are described below under each of these themes. While the defining

attributes of ‘meaningful activity’ identified in the existing literature and the qualitative study

were similar, there was a different emphasis in the context of RACF residents with dementia.

In addition to the attributes identified in the existing literature, participants in the qualitative

study raised the importance of the social aspect of ‘meaningful activities’. This adds a new

element to the model developed from the literature-based concept analysis, making ‘social’ the

sixth defining attribute of ‘meaningful activity’ in the specific context of RACF residents with

dementia.

The antecedents of ‘meaningful activity’ drawn from the literature-based concept

analysis included: sense of identity; physical and cognitive abilities; adaptation, enablement

and familiarity; activity availability; and resources. While these themes were used to guide the

analysis of the qualitative data, the antecedents of ‘meaningful activity’ were further refined in


response to the data. Some of the findings of the qualitative study related to antecedents that

emerged from the literature are now discussed under the related defining attributes section. The

antecedents of ‘meaningful activity’ relevant in the context of RACF residents with dementia

included: activity opportunities; enabling environment; family and staff support. The last

section of this chapter presents the consequences of ‘meaningful activity’ for RACF residents

with dementia. The literature-based concept analysis identified two main consequences of

‘meaningful activity’: increased activity participation and improved health. These themes were

used to guide the analysis of the qualitative data. Both themes emerged from the qualitative

study, but increased participation was broadened to increased involvement, including increased

social interactions as well as increased activity participation. An additional theme of sense of

normality also emerged from the qualitative study as important in the context of RACF

residents with dementia. The findings are summarised in Table 6.11 below, listing the themes

and subthemes under the defining attributes, antecedents and consequences.


Table 6.11. Themes and subthemes of ‘meaningful activity’ defining attributes, antecedents

and consequences

Categories Themes Subthemes

Defining attributes

Suited to the individual

One activity does not suit all

Activity suits physical and cognitive abilities

Activity is interesting

Engaging

Enjoyable

Goal-related

Keeping the mind active

Being productive

Helping others

Linked to identity Linked to the past

Personality

Social Interacting with others

Seeing others

Antecedents

Activity opportunities

Enabling environment

Family and staff support

Making activity choices


Limitations of support

Consequences

Increased involvement

Sense of normality

Improved health Cognitive function

Emotional wellbeing

6.2.1 Defining attributes

The defining attributes of ‘meaningful activity’ identified included: suited to the

individual; engaging; enjoyable; goal-related; linked to identity; and social.


The literature-based concept analysis revealed that for an activity to be meaningful to an

individual it needed to be suited to the skills and abilities of that individual. Under the theme


of suited to the individual, three subthemes emerged: one activity does not suit all; activity suits

physical and cognitive abilities; activity is interesting. The third subtheme is a unique

contribution of this qualitative study as being suited to the interests of the individual was not

discussed in the existing literature on ‘meaningful activities’.

One activity does not suit all

Participants agreed that there was no single activity or list of activities that were

considered to be meaningful. In addition, family members and staff acknowledged that

different activities were meaningful for different people and that it was important for them to

consider each individual with their unique abilities and interests. Large activity programs that

all residents were expected to participate in were not perceived as being appropriate. While this

was the common view of those participating in this study, participants reported that this view

was not necessarily represented in practice as it was believed that not all family members and

staff respected the notion that residents with dementia had unique abilities, interests and

preferences for activities and that different activities could have meaning for them.

S301: People think that people with dementia are all the same, they’ve got dementia so

yeah. I find a lot of people like that, ‘oh, they’ve got dementia so they can’t see properly,

they can’t speak properly’, you know. And that’s just not true, it’s so far removed,

they’re all at a different stage.

Activity suits physical and cognitive abilities

For an activity to be meaningful it needed to match the resident’s physical and cognitive

abilities. There was a sense that activities that were a suitable difficulty level allowed the

residents to participate and achieve something, while activities that were too difficult might

cause frustration, distress and anxiety. Staff reported that it was “really tiring for people with

dementia to try and keep up” (S106) with activities and this sometimes resulted in residents

walking away from the activities. However, activities that were too difficult for residents did

not always result in this. It was believed that residents could still be present during activities

that were beyond their capability but the person with dementia may not find these activities

meaningful.

F203: But non-meaningful activities, she might still go, they’ll say that they’re going

to have some particular movie on and she might think ‘oh yeah, I would like to see that’


and she’ll come and watch it, but she won’t be able to understand it, she can’t follow

it. So, there isn’t that meaning to it.

Family members and staff observed that for some residents with dementia there was a

general lack of motivation to participate in activities. Family members often put this lack of

motivation down to age or the effects of dementia making activity participation too difficult or

not worth the effort.

F201: It seems to me that one gets to the point [age] where you really don’t have, it’s

almost like you can’t be bothered expending the energy to do those things and the pay-

off might be some enjoyment but is the effort, does the effort outweigh the enjoyment

that you might get from it.

The main physical abilities that were perceived as important in this context were vision,

hearing and mobility. Vision and hearing impairments were a concern for activities that took

place in a social context with these impairments preventing residents from relating to others

and sometimes leading them to avoid these situations altogether. Activities also needed to be

suited to each resident’s level of mobility, allowing them to access and participate in activities.

F201: Movement is difficult for her... physical barriers are the main problems with her

enjoying some things. They’d be the major barriers. Her mobility and access to those

sorts of activities.

Participants also discussed the need for ‘meaningful activities’ to be suited to individual

cognitive abilities. One resident acknowledged that “you’re limited to what you can do and

what your mind can tell you to do” (R303). More specifically, activities needed to account for

impairments in memory, decision making, concentration, coordination, following instructions

and communication skills. Not being able to concentrate on an activity such as reading or

having impairments in the skills needed for participation such as communication skills in group

activities may limit a resident’s ability to engage fully with an activity. Face-to-face activities

requiring little attention to detail were considered easier for residents to participate in. Family

members suggested that sometimes it was helpful for activities to be group-based to avoid the

pressure that might be felt during one-on-one activities.

Family members and staff observed that residents’ preferences for activities changed

with their abilities over short periods of time due to the fluctuating nature of dementia

symptoms. Staff reported that “no two days are the same” (S201) and for some residents “no

five minutes are the same” (S203). To respond to this, staff sought to find what was important

to each resident at each moment. This was perceived as being challenging when caring for


residents with dementia and supporting them to participate in ‘meaningful activities’. Staff may

identify an activity that the resident responded well to and then the next time they facilitated

their participation in that same activity the resident’s reaction “could be better, it could be

worse, it just might be different” (S301). Staff needed to be flexible to cater for residents’

changing interests, abilities and support needs, limiting the value of a regular schedule of

activities.

S102: I think some people with dementia, the whole thing is fluid. The whole, everything

about dementia is fluid so you can never be organised with dementia and have things

set in stone that ‘this is what we do, and this is how we do it’ because every day is a

different day for people with dementia.

Changes in activities residents found meaningful were also seen over longer periods of

time. Family members and staff reported that the difficulty of activities that were meaningful

changed as dementia progressed with activities needing to be simplified in the later stages of

the condition.

F101: The complexity of what she participates in has probably changed now. Where

she would have maybe participated in something a little bit more complex, it’s now

much more simple, basic things that probably don’t take so much thinking on her behalf

anymore.

For some residents, awareness of limited abilities prevented them from participating in

activities they previously found meaningful. While this was not acknowledged in the interviews

by residents themselves, family members reported that residents were reluctant to participate

in an activity if they judged that they would not be able to participate as well or as fully as in

the past.

F201: With the painting or just doing some art activity, I’ve asked her about that and,

yeah, there’s a lot of self-judgement. ‘Oh, I can’t do that anymore’ or ‘I wouldn’t be

able to do anything’.

While it was important that activities were not too difficult, activities that were too easy

were not seen as meaningful either. Activities that did not utilise residents’ retained abilities

and were too easy were perceived as either not interesting or infantilising the residents. To

address this concern, staff reported that they often started by facilitating an activity or version

of an activity that they knew would be easy for the resident to participate in. They would then

build the complexity until it was challenging but still achievable, ensuring that the activity was

suited to the resident’s abilities.


S102: If you can find the right thing then they have an accomplishment and an enjoyable

activity that's something that they can think ‘well, you know, I really enjoyed that

because I'm capable of doing that’, whereas sometimes some things are just beyond

them and you don't want to make them feel inadequate and that they’re not capable of

doing something... you have to build up until you get to where it's not easy but it's not

‘not doable’.

Activity is interesting

For an activity to be meaningful it also needed to align with the resident’s interests. For

example, watching the television could be meaningful if it was a program or film the person

was interested in but not if it was a program they were not interested in. This was also the case

for other activities such as reading, music, going on outings or socialising with other residents.

The topic of the book, genre of music, the destination of the outing and topic of conversation

needed to be interesting for the individual resident to find the activity meaningful. Residents

were unlikely to even participate in an activity if they did not find it interesting.

R201: I mean they’re meaningful to the extent that if you weren’t interested you

wouldn’t go. If you are interested, you go along and usually you enjoy it.

Engaging

Findings from the literature-based concept analysis identified engaging as an attribute of

‘meaningful activities’. Participants also stated that ‘meaningful activities’ engage residents,

holding their attention and keeping them at the activity. From the perspective of family

members and staff, being engaging was part of what made activities meaningful to residents.

They used signs of engagement as a measure of whether an activity was meaningful for a

resident. For example, whether a resident was actively participating in, turning towards or

looking away from an activity would indicate if they were engaged and finding the activity

meaningful. Residents did not need to be engaged for long periods of time with staff referring

to “meaningful moments” (S106). While not raised by the other participant groups, some

residents emphasised the importance of variety in activities for them to be engaging and

meaningful. For example, variety in music styles at concerts and bus trip destinations.

According to family members and staff, engagement did not have to mean active

participation in an activity. Residents could also be engaged in an activity passively such as

watching others who were more actively participating or showing signs of interest. For


example, family members and staff often observed residents engaging with musical activities

passively by watching or tapping their feet to the rhythm of the music while other residents

were more actively engaged in singing.

S106: Sometimes they get so much just standing and watching other people. You know,

they might not even participate in the activity, but you've captured their mind to watch.

Which I would class as a meaningful activity for that person.

Enjoyable

According to the existing literature, enjoyment is a key attribute of activities that are

considered meaningful. The literature discusses enjoyment not only during activity

participation but in anticipation of activities and enjoyment of activity outcomes. Enjoyable

also emerged as an important attribute of ‘meaningful activity’ for RACF residents with

dementia.

Residents, family members and staff all perceived enjoyment as an important aspect of

‘meaningful activities’. There seemed to be an expectation that, if nothing else, activities would

at least be enjoyed. For residents, ‘meaningful activities’ were those that they chose to do rather

than something they felt they had to do and some reported that they simply would not go to

activities they did not enjoy. For some family members, the main aim of activities was

enjoyment. They reported reassuring the resident that enjoying what they were doing in the

moment was what mattered most, more than, for example, producing an artwork that could win

a prize or having lasting memories of the activities.

F302: It’s about enjoying it in the moment. That’s what me and my brother say, as long

as she enjoys it in the moment. Sometimes Mum gets upset that she’s forgotten what

she’s done but we tell her that it doesn’t matter because she enjoys it at the time. That’s

what matters.

It was important for family members to consider the enjoyment that an activity brought

to the person with dementia as they perceived other aspects of their lives as being sad and

difficult due to the experience of ageing and progression of dementia.

F404: I think the most important aspect of an activity would be that she’s enjoying it.

Because, you know, everything in there is miserable… I mean the whole scene is

horrible to me and things are only going in a horrible direction. So I reckon the main

thing is enjoyment.


Enjoyment was perceived as providing amusement or relaxation. Family members

reported that residents enjoyed activities such as dancing, music, art, quizzes and reading. For

staff, enjoyment was light-hearted with them referring to activities that were fun and using

humour.

S401: An activity person has to go out from left field and pick something else that might

really engage them - not only that, but make it fun. I think humour - humour is important

when you're doing an activity. I personally think humour is a great one.

However, enjoyment was not only equated to the activity being fun as residents and

family members referred to task-oriented and stimulating activities or “jobs” (R102) being

enjoyable.

When considering whether an activity was meaningful, family members and staff

observed body language, facial expression and how residents generally responded to activities.

In particular, they were looking for signs of enjoyment, interest or relaxation. The main positive

signs that they looked for included smiling and laughing while turning or looking away from

an activity indicated to them that the resident was not interested in or enjoying the activity. In

their role of supporting activity participation, staff reported reconsidering the suitability of an

activity if they could not see a resident exhibiting signs of enjoyment.

S301: That can be looking at a smile, looking at their eyes, looking at their face to see

if there’s any frown lines, tells me that they’re not enjoying it.

Goal-related

The literature-based concept analysis revealed that ‘meaningful activities’ were related

to goals, with individuals perceiving a purpose in their activity participation. For most

participants, it was important for residents to be occupied. However, to be meaningful,

activities also needed to be purposeful and goal-related. Residents may still attend other

activities, but they were seen as just “busy work” (S102) or passing the time.

S103: [a ‘meaningful activity’ is] something that creates a sense of purpose for the

person ‘cause something can be entertaining but not purposeful. You know, you can

have a laugh at something as a passing by but to engage with something, for it to be

meaningful, I think that the person needs to feel purpose.

Participants had different expectations about what would make an activity purposeful or

goals that could be achieved through participation in an activity. Examples of specific goals


were discussed under three subthemes: keeping the mind active; being productive; helping

others.

Keeping the mind active

Keeping the mind active was a goal of participating in ‘meaningful activity’ that was

raised by residents, family members and staff. Residents found meaning in stimulating

activities that helped them to learn about others or interesting topics and keep informed about

current affairs. Activities that were seen to keep the mind active included reading the

newspaper and books, watching documentaries, attending informative talks and talking to other

residents. Residents also talked about the stimulation keeping “the old brain working” (R302).

This stimulation from activities was seen by some residents as a means of preventing the

cognitive impacts of dementia.

R303: It helps you keep your mind going. Because some people when they get

Alzheimer’s, they go into a trance.

Being productive

Another goal of activity that was raised by residents and family members was producing

something tangible. This wasn’t raised by the staff. Examples of activities that were seen by

the participants as productive included art activities and woodworking. When asked what made

an activity meaningful to them one resident, who frequently participated in art activities,

responded “end results” (R105). From the perspective of one family member, an activity could

be goal-related and made meaningful by having a space such as a garden or an end product

such as a planter box that the resident had ownership of.

F205: If he could just build something that he could keep that was his then I think that

would be more meaningful to him.

Helping others

The key goal of ‘meaningful activity’ that was raised by all three participant groups was

helping or caring for others. Staff acknowledged that everyone, regardless of a dementia

diagnosis or living in an RACF, needs opportunities to give and do nice things for others and

this can make activities meaningful. There was a range of activity examples that allowed

residents to care for and help others such as interacting with children, caring for pets and


generally responding to the needs of those around them. The importance of helping others is

illustrated in the following quote from one of the participating residents.

R202: They’ve [other residents] knitted little squares and the squares make rugs… They

made five rugs for the [hospital], for the people over there. It’s good to put over their

knees in the cold weather. And my brother said to me, he said, ‘They’re doing a

wonderful job [name].’ Cause I was sitting here crying. He said, ‘You get around there.

I know you can’t knit but it’s just the fact that you’re doing something to help. You’re

unwinding the wool and you’re taking the labels off them and you’re helping.’

Sometimes [activity assistant] will say, ‘You can do the raffle today.’ And I go round

and ask people if they would like tickets in the raffle sort of thing and I help that way

as well.

It was also seen as important that activity opportunities allow residents to contribute to

the maintenance of the physical environment and add to the running of the RACF. This was

primarily achieved by undertaking tasks that needed to be done such as gardening, clearing the

lunch table, folding washing or maintaining the fish tank.

F302: She used to help out on the kiosk run with [staff member]. I think she really

enjoyed it, going around, seeing what the other residents wanted from the trolley… she

liked to feel like she was helping. And [staff member] from the laundry used to come

down and ask her to help with folding the washing. And Mum loved to do that.

However, the goal of helping others through contributing to the running of the RACF

was not relevant for all residents. Some residents perceived these activities as work and no

longer wanted to participate in any activity that resembled work.

F407: She used to join in folding the washing and that, I’ve tried to get her to do that

this time. She’s been in here 18 months now, nearly two years. She won’t, she’ll say,

‘I’m not working’.

Linked to identity

The literature-based concept analysis revealed the importance of ‘meaningful activities’

allowing those participating to express or reinforce an aspect of their identity. The main

subtheme raised by all participant groups was activities that were linked to the past. Family

members and staff raised the additional subtheme of personality.


Linked to the past

‘Meaningful activities’ were often linked to the resident’s past. Residents did not talk

about activities that were meaningful in the past compared to activities that are meaningful

now. Rather they talked about activities that had always been meaningful to them continuing

to have meaning while those that were not meaningful in the past were still not meaningful. In

this sense, these activities were linked to an aspect of their identity. For example, being a

spiritual or creative person, a pet owner or a gardener. Family members and staff also discussed

activities being made meaningful through a link to the past in relation to a resident’s identity

within their family. This seemed to be particularly important for female residents. Some of the

activities that were meaningful for these residents included cooking and nurturing others.

F303: She’s spent most of her life, a great deal of her life doing home work, so things

like cooking [are meaningful]. I think if she was given the opportunity to get involved

in cooking, she would probably find that worthwhile.

Participants reported that residents could often relate to activities that were linked to their

past. Staff felt this was particularly important for residents with dementia as their impaired

memory meant that past activities and interests were often what they remembered most clearly.

This brought familiarity, helping residents identify with the activity and understand how to

participate.

However, the importance of a link to the past did not negate the need for activities to be

suited to individual abilities as identified in the earlier attribute. Family members and staff

acknowledged that changes to living situation and abilities may mean that the resident could

not continue to participate in the same activity that they found meaningful in the past. In these

situations, residents could often still participate in related activities that allowed them to

express that aspect of their identity. For example, for one resident who had previously worked

on a fishing boat, watching fishing shows and reading fishing books were ‘meaningful

activities’. Family members and staff also noted that activities may need to be adapted while

maintaining links to their past.

F201: So, I mean, again one of those, you know, wheelchair accessible gardens where

she could maybe dig a hole with assistance and plant a plant or something and water

some plants. I reckon that could be an activity that she’d enjoy doing. It’s a bit related

to what she used to do. She used to like her garden and growing things.


Personality

According to family members and staff, participating in ‘meaningful activities’ allowed

residents to express their usual personality such as being a nurturer or a social person. Other

residents who were happy in their “own company” (F405), were unlikely to find group-based

activities meaningful. For most people, their personalities remained and the way they

participated in activities they found meaningful was also unchanged.

S106: You know people’s personalities sometimes are still down there. The ones that

sit and smile and look at what's going on are probably the ones who sat in the corner

of the pub and every so often had a conversation if someone spoke to them… You know

if you're a ‘skirter arounder’ and you've always been a looker you probably will always

be that tendency. That doesn't mean they’re not having a meaningful activity.

Social

A social aspect was not emphasised in the existing literature as an attribute needed for

activities to be meaningful. The attribute emerged as important in the specific context of the

lives of RACF residents with dementia. Under this theme, two subthemes emerged: interacting

with others and seeing others.

When asked what made an activity meaningful, residents, family members and staff often

talked about the social aspect of an activity. The importance of the social aspect of activities

was to the extent that some family members believed any activity could be meaningful to a

resident if it had a social aspect. It was the social aspect of the activity that made it a

‘meaningful activity’.

F402: She’s a real people person so she likes being around people and interacting with

people. So, because of that, it doesn’t so much matter what the activity is, so long as

it’s involving people… So that’s sort of the main purpose of the activities for her is

more the social aspect.

Similarly, sometimes the activities themselves would not be meaningful if it weren’t for

the interaction with others that took place during activity participation. For residents, activities

were “not much fun” (R301) if they were doing them on their own. This was observed by

family members. For example, one resident enjoyed the musical activities run in the community

hub area of the RACF but would frequently decline to listen to similar music on a CD in her

own room. It was the social aspect of the community music activities that she valued.


Interacting with others

Activities that brought residents out of their own rooms and facilitated interactions with

others who were also participating in the activity were perceived as important. Residents

wanted to meet other residents and learn about their lives. Residents reported that having

interesting and knowledgeable people to interact with made them want to stay and continue

participating in activities. The social aspect of activities also gave residents opportunities to

connect with, relate to staff and be part of a team with a sense of comradery.

R403: You’re mixing with people too and I think that’s important. Some of the people

here have had some interesting lives. They’re not famous or anything but they had some

quite interesting things in different places. It’s good, a good bunch of people.

Having a social aspect did not necessitate large group activities. Staff suggested that for

most residents a small group or one-on-one interaction helped residents to connect with others

and come out of their shell. This was particularly beneficial for those who found it confusing

or overwhelming to be around a lot of people.

The other people involved in the activity could also be a barrier to residents participating

in ‘meaningful activities’. For example, a resident may decide not to participate in an activity

if they had previously had a negative experience with any of the staff involved or the other

residents also participating in the activity. Family members also saw that a lack of other

residents who were cognitively able to engage in conversations limited their opportunities for

‘meaningful activities’. This was a particular concern for residents living in dementia-specific

areas. Family members generally accepted that this was an unavoidable reality of living in an

RACF and that this gap could sometimes be filled by staff engaging more with those residents

themselves. Family members also suggested that staff could connect residents with other

residents they could engage with.

F303: My mother's a very social person so she would probably enjoy things that she's

doing with other people. So one question that's obviously important, is that if possible

to match her with other people who are reasonably aware. I mean she complains

perhaps somewhat unkindly about the fact that some of these people are almost

catatonic state… it doesn’t make for a particularly interesting companionship… I think

being in the dementia wing is probably in some ways limiting her even if it’s necessary.


Seeing others

Residents, family members and staff also acknowledged that simply having other people

around and knowing that they were not alone or being left out could sometimes be enough to

make an activity meaningful. Family members felt that residents “don’t have to be chatting all

the time” (F106). Being able to participate in activities alongside others, while not necessarily

interacting directly, encouraged some residents to participate in activities and helped them find

meaning in those activities.

F201: I think doing things with others. I think, you know, if I [son] was there or [friend]

was there, and we were involved she would get involved. I think, or if people in the,

doing it alongside her, you know, if other people in the nursing home are doing it as

well, she would be more inclined to do it.

Seeing others could also be important for residents who did not have an interest in the

activity that others were participating in or residents who had more severe dementia preventing

them from following the activity or understanding or communicating with others. Family

members thought it was important that residents “feel that they’re not isolated, they are not

alone, they are part of what’s happening” (F203). Even for residents with severe dementia

who may not build lasting relationships with each other, staff perceived a sense of familiarity

that developed through participating in activities as a group. Staff saw that as meaningful.

S102: Really, anyway, whether they’re participating or not they’re still socialising by

being within a group of people… I say ‘well let’s just put them near to people so that

they can feel the social aspect’, they don't have to be part of the game or the song or

the, you know, they just have to be, they just need to know that there's people around,

that there's other people, that they're not totally alone and sometimes that's enough for

some people.

6.2.2 Antecedents

The antecedents of ‘meaningful activity’ that emerged for RACF residents with dementia

included activity opportunities, an enabling environment and support from family and staff.


Residents and family members reported that there was an abundance of organised

activities at the RACF, providing a range of activity opportunities. Residents felt that they


always had something to do. For some residents, there were more activity opportunities living

at the RACF compared with opportunities for activities when living alone at home. Residents

also reported that in their current situation they had the time to participate and absorb

themselves in activities and this contrasted with other times in their lives when they were busy

working. Staff members reinforced that a range of activity opportunities needed to be available

to cater for each resident. Having a variety of activities allowed residents to gravitate towards

those that interested them.

S106: I think it's trial and error and I think it's watching where they’re gravitating to.

So, if someone’s, you know, reading a book in the corner and they’re gravitating over

there then you try and give them a book or something to read… if there's enough going

on around them slowly and nicely they’ll track towards what’s interesting them.

However, when asked about activities, residents and family members seemed to focus on

those organised and run by RACF staff rather than activities they could do on their own or

outside of the scheduled activities. Residents did not see many other activity opportunities,

with alternatives to the scheduled activities limited to going to bed and watching the “rubbish

on television” (R204).

R405: They’re very good here, they keep us going. Keep things happening all the time,

so if you want to do it you do and if you don’t you just go to bed.

Despite the variety of organised activities, family members felt that there were some gaps

in activity opportunities for example, on weekends and for male residents. Staff were also

aware that there were fewer activity opportunities for some groups such as male residents and

actively sought additional opportunities for those residents.

S301: I think only once, and that was the other week, I said to go to a specific spot [on

the bus trip] and that was because the oil rig was coming up the river and I thought,

for some reason it’s always slightly trickier to find real male focused activities. It’s not

hard but it’s trickier so I thought the oil rig going up the [river] was something that the

blokes would like to see. Obviously, the women as well, anyone can go on the trip but I

wanted to make sure that men were asked.


Family members and staff recognised a suitable environment as important for enabling

residents with dementia to participate in ‘meaningful activities’. For some residents, a familiar


environment provided the security needed to participate in activities. A smaller, contained

environment that wasn’t too noisy helped residents with dementia to feel comfortable. In

contrast to the integrated areas of RACFs that were often large and busy, some residents felt

more comfortable and secure to participate in activities in the smaller, familiar environment of

the dementia-specific unit where they lived. In one RACF, staff reported that some residents

in the dementia-specific unit would not leave the unit to participate in activities in other areas

of the RACF despite activity opportunities being made available in those areas. Family

members also reported that residents often did not feel comfortable or safe to leave the familiar

environment of the RACF to participate in activities with family or friends. For example, one

resident was afraid of falling when outside of the RACF “yet she’s usually fairly confident, in

here [RACF] she’s happy” (F202).

It was also perceived as important that the environment was free of physical hazards for

residents with impaired mobility and included features that could make activities accessible

such as wheelchair accessible garden beds. Activities needed to take place in areas of the RACF

that were accessible to residents. One family member raised concerns that most activities were

held in a central area in the RACF with few held in the smaller living area in her mother’s area.

This made many activities inaccessible for her as she required assistance with mobility. This

contrasted with a previous experience in a smaller RACF where all activities were held in one

area where the residents were already present. The family member reported that residents

participated in more activities, including ‘meaningful activities’, when the area where activities

were run was easily accessible. An accessible environment for activities was also important for

residents living in secure areas. For example, residents living in secure areas needed to have

access to their own activity areas including outdoor spaces.

F105: Upstairs they can’t go outside and they are stuck away in a secure area. That

does not make sense to me. If you’re going to have a secure area, have a secure outdoor

area for people.


Family members and staff played an important role in supporting residents with dementia

to participate in ‘meaningful activities’. The support ranged from prompting to participate in

activities, assistance initiating activities and adapting activities to residents’ needs and interests.

These are discussed below under two subthemes: making activity choices and activity

participation. Staff provided the majority of support for residents to participate in ‘meaningful


activities’. This reassured family members that the residents were participating in activities

even when they could not be there to support them. Despite this, family members and staff

acknowledged there were some limitations to support and this was the third subtheme that

emerged from the data in relation to support for ‘meaningful activities’.

Making activity choices

Staff found it helpful to know each resident and their life story in order to provide support

for activities. This was particularly important for staff involved in developing the individual

activity plans as well as the broader RACF activity program. Knowing the residents helped

staff to identify activities that may be meaningful and allowed them to “incorporate everything

that is important to them [residents]” (S403) into their broad activity programs. Staff also

identified specific aspects of a group activity that may be meaningful to an individual resident

as illustrated in this quote.

S403: And not just reading newspaper articles - yes, we're going to read the main things

but we're also going to - like, we've had a resident who was a mechanic, so if there was

a story about a car, then we can encourage conversation knowing what they probably

would have read on their own accord because those topics were important in their life.

When attempting to identify ‘meaningful activities’ for residents, staff also found it

helpful to know the typical behaviours that a resident might exhibit when they did not want to

participate in an activity. This was particularly important for residents who were unable to

communicate this verbally as behaviour changes may be their way of expressing that they did

not want to participate in the activity.

Despite identifying potentially ‘meaningful activities’, staff also acknowledged that they

allowed residents to guide the direction of activities as they were participating.

S401: When you're running an activity you allow them to dictate where they want to

take it. You might say you're going to talk about a wedding, but you might end up talking

about the royal family in 1860 or something like that. You allow them to take you where

they want to go.


Some family members provided resources such as art supplies or crossword books to

ensure the resident had opportunities to participate in activities that they found meaningful.

However, simply having these resources available did not mean they would be used by the


residents. Residents often needed additional support to use these resources to participate in

activities such as reminders that the resources were there, initiating the activity or support to

use the resources during activity participation.

F401: She has got everything she needs. She's got that much paper, she's got big

drawing books down there, she only needs to open the page, but of course, she doesn’t

remember and she doesn’t look, so she comes up and hounds the nursing station staff

for some paper to draw on.

Staff reminded residents about activities that were scheduled and encouraged them to

attend. This was the only aspect of support for activity participation that was identified by the

residents. Staff prompting was mostly done verbally and for many residents, it needed to be at

the time an activity was commencing. Another example of prompting about activities was

family members or staff writing specific activities and times on a whiteboard for residents to

review themselves during the day. Some residents found prompting helpful as they

acknowledged that they otherwise wouldn’t know what activities were available. One resident

referred to these prompts as nagging by the staff while others talked about the activities that

were handed out for them to do. Regardless of how they perceived the prompting from staff,

participants mostly reported that residents participated when prompted.

F101: I’ve noticed that she’s quite happy to participate as long as someone reminds

her, someone comes and collects her. So, she does tend to forget, well she is very

forgetful now. It’s no point in saying something’s going to be on at one o’clock or

something’s going to be on tomorrow. She will have forgotten.

Some residents needed family members and staff to provide encouragement in addition

to prompting to initiate activities. Family members emphasised that residents needed

reassurance that the activity would be a positive experience and that residents often “need to

be persuaded, in a nice way of course” (F302). Some residents needed a family member or

staff to physically take them to an activity, set up the activity and get them started. In other

situations, staff initiated activities by starting to participate themselves and encouraging

residents to join in.

S301: Make sure that they can reach the equipment that you’re offering them, so, if it’s

a basket of laundry to be folded, you put that laundry in front of them and you might

have to help them and you might have to say, ‘look at this tea towel, should we fold it

up and pop it in the cupboard?’. Really engage yourself, you know, someone with


dementia, you’re not just going to put a puzzle down in front of them or a basket of

laundry and expect that they do it.

In some situations, residents adapted activities themselves or took steps to compensate

for their impairments so that they were still able to participate in activities. For example, sitting

at the front near those who were talking to compensate for vision impairment or sitting to

alleviate back pain.

R102: I fold the bibs up there of a morning. It’s another job they’ve given me. And my

back starts to tell me, I sit down for two or three minutes and I’m off again. Standing

up, working on the table… I’ve managed to overcome that without any great trouble.

Family members and staff also actively adapted activities to suit individual abilities.

Adapting activities could be done on a one-on-one basis such as reading aloud the questions of

a crossword puzzle instead of the resident being required to read on their own. Family members

often provided this type of support.

F105: And my sister was really smart, about four months ago she was here and she

brought a crossword book with her. Although Mum can’t write or read properly

anymore, [my sister] asked her the questions and she was still really, really switched

on there.

Activities could also be adapted by providing individual support in a group situation that

allowed everyone to be included. This type of support was more often provided by staff in their

role of facilitating the RACF activity program.

S403: Or the case of vision impairment. So, for example, with the newspaper reading

this morning, the lady who is vision impaired - so, there was a picture I was showing

around, so I sat down and described the picture to that woman so that she is still

benefiting from that newspaper reading.

Limitations of support

While family members and staff provided a range of supports for residents to participate

in ‘meaningful activities’, they acknowledged that there were some limitations to that support.

Some family members found it difficult to successfully provide support on an ongoing basis.

This was related to limitations on when they could be present at the RACF as well as the daily

and weekly variations in the activities that were provided in the RACF as part of the activity

program.


F401: In the early days we used to extract information through your monthly sheet

[RACF activity calendar] and write it out in big font and the time and she'd look at it

and she'd tick it off. I don’t know whether we became lazy or whether it was too hard

to do that because it didn’t take account of variations that happened on a daily or

weekly basis, which is understandable... but we aren’t going down and opening it [the

diary].

Staff time constraints made it challenging for them to provide what they perceived as

quality activity support to all residents who needed it. Family members and staff recognised

that sometimes staff support was inadequate for residents to participate in ‘meaningful

activities’. However, family members did not blame the staff for this, with some staff providing

support to residents in their own time. Rather, the limitations of support were attributed to

RACF and even health system financial constraints leading to staff time constraints.

F106: Unless it was one-on-one she’s just not going to do it. But with the nurses, as a

country we can’t afford it. There are practical limits, to what you can do with elderly

people.

6.2.3 Consequences

The consequences of ‘meaningful activity’ for RACF residents with dementia included:

increased involvement in activities and socialising; a sense of normality; and improved

cognitive and emotional health.

Increased involvement

Participation in ‘meaningful activity’ kept residents occupied and “out of mischief”

(R102). In contrast, not being involved in ‘meaningful activities’ lead to boredom, making the

days feel long and monotonous.

R405: Oh, I’d die of boredom if it wasn’t for those things.

Participating in ‘meaningful activities’ also facilitated greater social interactions and

allowed residents to more easily interact with others and engage in conversations. This

consequence of participating in ‘meaningful activities’ was valued by residents as well as

family members and staff. Residents could talk to other residents about the activity and it also

helped to build more lasting relationships with others at the RACF. One resident felt she had

become a more social person since participating in the knitting group.


R202: I do go because it gets me out of my room. I think that’s what life’s all about.

You’ve got to sit and meet and talk to people. That’s my motto anyway… And my family

that come and see me have noticed the change in me because I’m a different person

they reckon. I was not a very good mixer.

Participating in ‘meaningful activities’ gave residents something to talk about with

family members when they came to visit. Activities they did on their own also gave them

something to talk about with staff and other residents at the RACF.

F101: So, she’s definitely a lot happier and a lot more, I suppose, proud of the fact that

she’s got something to talk about instead of having really just sat in the room and, ‘no,

there’s nothing really happened today’ kind of thing… So that’s one big benefit.

Sense of normality

Residents and their family members acknowledged that an absence of ‘meaningful

activities’ could be one of the most difficult changes for residents to cope with after moving

into the RACF. In contrast, ‘meaningful activities’ helped residents to adjust to life in the

RACF. For example, one couple attended the resident meetings and described this as a

‘meaningful activity’ as they felt it helped them to acclimatise after their recent move to the

RACF. Participating in ‘meaningful activities’ helped residents become familiar with the

environment, the daily running of the RACF and others which helped them feel at home.

R202: I never miss out on anything cause what’s the good in being here if you sit in

your room all day… No, I think, seriously, I think this is my home, it’s not as nice as

my own home but I don’t mind being here. I wouldn’t like to be anywhere else… You

know it’s just like, just being with your brothers and sisters all the time.

‘Meaningful activities’ also gave residents a sense of normality and stability despite other

changes in life. These ‘meaningful activities’ were activities that the residents would have

participated in before they moved to the RACF. For example, eating an ice-cream on a hot day

and attending church services. Family members felt that residents deserved this sense of

normality through participating in these activities.

F105: They deserve to be outside on a hot summer’s day eating an ice-cream to get

some feeling of freedom and normality.


Improved health

Participants perceived improvements in resident health in relation to cognitive function

and emotional wellbeing as a result of participating in ‘meaningful activity’.

Cognitive function

Participation in ‘meaningful activities’ had positive impacts on residents’ cognitive

function. Family members and staff felt that participation in ‘meaningful activities’ helped

residents with “retaining that social skill, retaining the conversation skills and that sort of

thing, word recollection” (F101). Family members also reflected on the way residents were

more present when participating in an activity that was meaningful to them. Residents seemed

to be more aware of their surroundings, more present in the conversations they were having

with others and seemed to pick up on subtle cues.

F105: She’s much more, she’s probably more chatty about real things if that makes

sense. Like, she can say how much she enjoys the music or she can have a one-on-one

with someone and have that repartee... And it can be a real conversation about real

things if that makes sense. But yes, so if she’s enjoying stuff she’s more present as the

person that she was… Being a stirrer and being able to talk about it but not non-

sensical.

Emotional wellbeing

All participant groups reported that participation in ‘meaningful activities’ had a positive

impact on residents’ emotional wellbeing. Residents expressed that they could not do without

‘meaningful activities’ and not having ‘meaningful activities’ to participate in could make

someone feel lost. Participating in ‘meaningful activities’ brought positive emotions.

Residents, family members and staff recognised the capacity of ‘meaningful activities’ to

improve mood and this was reflected in one family member referring to ‘meaningful activities’

as “therapy” (F101). A common theme among residents and family members was that

participating in ‘meaningful activities’ “brightens you up a bit” (R303) or has the potential to

“switch a light on” (F302) in the resident. This happiness and sense of emotional wellbeing

contrasted with other times when family members observed residents’ negative mood.

F203: She’s more cheerful, she’s more, what you might call alive, I suppose. You know

that miserable, kind of hangdog look. She doesn’t have it. So, I do think that it lifts them

up a bit.


Participating in ‘meaningful activities’ could also be relaxing for residents. They gave

them something to focus on in quiet moments. The activities could also be calming and help

residents take their mind off worries, helping them to “generally be content” (S202). Staff also

associated this calming effect of participation in ‘meaningful activities’ with reduced dementia

related behaviour changes.

F302: If she wasn’t doing the activities she’d be worrying about where am I, why am I

here, why can’t I remember things. She’d be thinking too much and worrying. When

she’s playing the games on her iPad, she’s not thinking about those things.

A sense of fulfilment came from participating in ‘meaningful activities’. Participating in

‘meaningful activities’ that helped or contributed to others helped residents feel important and

needed, giving them a sense of purpose and self-worth. For one resident the stimulation she

had from reading the newspaper and learning about current events was important to her as it

made her feel that she was part of the world rather than just existing.

R201: You’re feeling you’re still part of the world, not just existing. It’s probably quite

true but you like to think you know what’s going on.

6.3 MODEL OF ‘MEANINGFUL ACTIVITY’ FOR RACF RESIDENTS WITH DEMENTIA

In the context of the lives of RACF residents with dementia, ‘meaningful activities’ were

perceived as those activities which were suited to the individual in relation to their physical

and cognitive abilities as well as being interesting. To be meaningful, activities also needed to

be engaging, enjoyable, related to a personally relevant goal, linked to an aspect of the person’s

identity and have a social aspect. This qualitative study added to what was already known about

‘meaningful activity’ from the literature with several new themes and subthemes identified.

Enjoyment was seen in task-oriented activities in addition to light-hearted fun while

engagement was perceived as passive as well as active. The key defining attribute that was

added was the importance of the social aspect of ‘meaningful activity’, whether that be actively

interacting with others or seeing others.

At a basic level, a range of activity opportunities were needed for residents to be able to

participate in ‘meaningful activities’. Residents with dementia also required an enabling

environment as well as support from family members and RACF staff. The participants

perceived several positive consequences of participating in ‘meaningful activities’. Residents


experienced increased involvement in both activities and socialising with others at the RACF

as well as with family members. In line with the emphasis on the social aspect of ‘meaningful

activities’ in the context of RACF residents with dementia, the consequence of increased

socialising was a subtheme not evident in the existing literature but added to the model as a

result of the qualitative study. Participating in ‘meaningful activities’ also gave residents a

sense of normality and resulted in perceived improvements to cognitive function and emotional

wellbeing.

These findings are illustrated below (Figure 6.1) in the model linking the antecedents and

consequences to the defining attributes of ‘meaningful activity’. In the RACF context,

‘meaningful activity’ occurs within the broader care environment.


Figure 6.1. Model of ‘meaningful activity’ for RACF residents with dementia

Antecedents




Consequences

Increased involvement Sense of normality Improved health

Meaningful activity

Suited to the

individual

Engaging

Enjoyable

Goal-related

Linked to identity

Social

Care Environment


6.4 SUMMARY

Findings from the qualitative phase of this study confirmed that there was no single

activity or list of activities that were meaningful for RACF residents with dementia. From the

perspectives of residents themselves, family members and RACF staff, ‘meaningful activities’

were enjoyable, engaging and suited to the individual. It was important for ‘meaningful

activities’ to have a social aspect, be linked to an aspect of the resident’s identity and allow

them to pursue a personally relevant goal. Antecedents for ‘meaningful activity’ in this context

include activity opportunities, an enabling environment and support from family and staff to

identify, attend and participate in ‘meaningful activities’. While participation in ‘meaningful

activity’ occupied residents, participants also perceived more profound consequences such as

enabling socialising, improving cognitive function, providing a sense of normality and

promoting emotional wellbeing.

This chapter has reported the analysis of data from interviews with RACF residents with

dementia, their family members and RACF staff. This has provided insight into what makes

activities meaningful in the context of the lives of people living with dementia in RACFs, what

circumstances or support enable participation in these activities and the outcomes of

participation. The next chapter will discuss the findings of this study, drawing together these

findings with the findings of the literature-based concept analysis and the quantitative analysis

of the AusQoL study data.

Chapter 7: Discussion 232

Chapter 7: Discussion

The previous chapters have reported the findings of the three phases of this study. This

chapter discusses those findings, integrating the three phases. The structure of the discussion

follows the five research questions.


dementia?

2. What is the QoL of people living with dementia in RACFs indicated by a)

engagement in activity and b) apparent emotions?

3. What is the perceived role of activity, including ‘meaningful activity’, in the QoL of

people living with dementia in RACFs?

4. What factors enable or inhibit access to, and engagement in, activities, including


5. What strategies are used by staff to a) identify activities meaningful to individual

residents and b) create opportunities for resident engagement in these activities?

7.1 RESEARCH QUESTION 1- WHAT ARE THE FUNDAMENTAL ATTRIBUTES OF A ‘MEANINGFUL ACTIVITY’ FOR PEOPLE WITH DEMENTIA?

To define the fundamental attributes of ‘meaningful activity’ in the context of people

living with dementia in RACFs a literature-based concept analysis was conducted and RACF

staff, families and residents with dementia were interviewed. The qualitative data from the

interviews provided clarity around some of the attributes identified in the literature and how

they apply in the context of the lives of people living with dementia in RACFs. The six

attributes of ‘meaningful activity’ for people with dementia that emerged from this study

include: suited to the individual, linked to identity, engaging, goal-related, enjoyable and social.

7.1.1 Suited to the individual

There was broad agreement among the literature, residents with dementia, their family

members and RACF staff that ‘meaningful activities’ are highly subjective and specific to each


person. The individualised nature of ‘meaningful activities’ makes them an important aspect

of implementing person-centred care for people living with dementia (Han et al., 2016b). A

central principle of person-centred care is that each person is acknowledged as a unique

individual (Kitwood, 1997). This principle of person-centred care fits with the understanding

that the meaning of an activity is perceived by the individual participating in it and cannot be

created by others (Drageset, Haugan, & Tranvag, 2017). From a person-centred perspective,

people with dementia have a psychological need for occupation, being occupied in ways that

are personally significant and utilising the person’s abilities (Kitwood, 1997). The attribute of

being suited to the individual, as well as ‘meaningful activities’ being goal-related and linked

to identity, means that participation in ‘meaningful activity’ can address the psychological need

for being occupied in ways that are personally meaningful.

Both the literature and participants in the qualitative study saw it as important for

activities to be suited to individual abilities to be meaningful. Activities that are of a suitable

difficulty level for a given resident enable participation and allow them to feel a sense of

achievement and competence from participating in activities. While this was raised by family

members and RACF staff, residents themselves did not perceive this as important. However,

this remains a key defining attribute of ‘meaningful activities’ in this context. This difference

between participant groups points to the role of family and staff in being aware of residents’

abilities and providing the necessary support to enable residents to participate in ‘meaningful

activities’. This will be discussed further under research question four, with support emerging

as a key factor that enables residents to participate in activities, including ‘meaningful

activities’.

Findings suggest that for activities to be meaningful to residents with dementia they

needed to both align with their interests and be of a suitable difficulty level for each person’s

functional and cognitive abilities. Activities that align with individual interests and abilities

have been found to have positive effects on agitation, dementia related behaviour changes,

participation levels and affect (Han et al., 2016b). Aligning activities with individual interests

may be more important than activities being of a suitable difficulty level. Activities that align

either with interests alone or interests and abilities have greater benefits compared with

activities that align with abilities only (Han et al., 2016b).


7.1.2 Linked to identity

Past activity interests can play a role in current activity interests and engagement (Cohen-

Mansfield, Marx, Thein, & Dakheel-Ali, 2010). For example, residents with a past interest in

music or pets have demonstrated longer duration of participation and greater levels of

engagement in musical and pet-related activities respectively compared to residents without a

previous interest in these activities (Cohen-Mansfield, Marx, et al., 2010). However, cognitive

decline and natural changes in interests over life stages are likely to influence the present

activity interests of residents with dementia (Cohen-Mansfield, Marx, et al., 2010). It has been

suggested that when considering ‘meaningful activities’ for residents with dementia, family

members place more emphasis on past experiences and activity interests while RACF staff

focus on the resident’s current health, situation and interests (Peoples, Pedersen, & Moestrup,

2018).

In the current study, family members and staff reflected on the changing nature of

‘meaningful activities’ and reported that knowing the resident and their past activity interests

did not guarantee that activities chosen by others would be perceived as ‘meaningful activities’

by the individual with dementia. Knowing residents’ past activity interests may even lead to

assumptions about their current activity preferences which could risk excluding residents

themselves from activity choices and limiting their activity opportunities (Mondaca,

Johansson, Josephsson, & Rosenberg, 2019). Therefore, it is important to know each resident’s

past as well as their current interests and preferences and acknowledge that these may change

(Han et al., 2016b). Family members and staff in this study concurred and emphasised the need

to modify activities and provide adequate support ensuring activities are suited to individual

abilities, increasing the likelihood that ‘meaningful activities’ linked to a resident’s identity

continue to be meaningful.

7.1.3 Engaging

The importance of activities being engaging was evident from both the ‘meaningful

activity’ literature and the qualitative study. The ‘meaningful activity’ literature focused on

active types of engagement for activities to be meaningful. Participants in the qualitative study

acknowledged that residents could be engaged in activities in multiple ways and this is

supported by the general activity literature (Cohen-Mansfield, Hai, et al., 2017; Olsen,

Pedersen, Bergland, Enders-Slegers, & Ihlebaek, 2016). In an example provided in the


literature of animal-assisted activities, residents could be engaged in the activity by observing

the dog, observing the other participants, responding to contact from the dog, actively engaging

the dog themselves or interacting with the other participants (Olsen et al., 2016). Engagement

can also be measured by duration of attendance at an activity or level of engagement ranging

from dozing or not engaged to passively or actively engaged (Cohen-Mansfield, Hai, et al.,

2017; Kolanowski, Buettner, Litaker, & Yu, 2006). Level of engagement can be difficult to

observe and measure (Csikszentmihalyi, 1993). In people with dementia, this often involves

observing facial expressions and body language in addition to behaviour (Cohen-Mansfield,

Hai, et al., 2017). The specific dimensions that can be observed include emotional, verbal,

visual, behavioural and collective engagement and signs of agitation (Jones, Sung, & Moyle,

2015). Staff in this study acknowledged the importance of observing facial expressions such as

smiling and frown lines and body language such as facing towards the activity to assess if an

activity was engaging and meaningful.

7.1.4 Goal-related

Participants in this study confirmed the importance of ‘meaningful activities’ being goal-

related, as was identified in the literature-based concept analysis. Residents, family members

and RACF staff all framed ‘meaningful activities’ as a useful way for residents to spend time,

in contrast to activities perceived by them as not having any purpose for the resident. For

example, for some people, activities such as watching television or attending concerts were

perceived as merely passing the time. These findings are consistent with literature that suggests

that activities that allow residents to make or achieve something, contribute or use skills can

give the resident a sense of purpose (Clarke et al., 2019; Peoples et al., 2018; Tak, Kedia,

Tongumpun, & Hong, 2015).

This distinction between productive and non-productive activities has been made in

previous research (Ritchey & Dietz, 2001). The idea that being productive or goal-related

makes activities meaningful may be based on the assumption that society values productive

activities more highly than other activities (Ritchey & Dietz, 2001). Being productive and

having a sense of purpose may become more important as residents become more cognitively

and functionally dependent (Tak et al., 2015). This perspective on ‘meaningful activities’ aligns

with activity theory on ageing which places value on older adults remaining active participants

in and contributors to the world around them (Wadensten, 2006). According to this theory, as


previous productive roles are lost, older adults need to remain active by taking on new

productive roles in society such as through participation in social groups and activities or

volunteering (Diggs, 2008). Similarly, being productive and helping others emerged as key

goals of participating in ‘meaningful activity’ in the current study.

7.1.5 Enjoyable

The review of the literature identified that enjoyment was perceived as an important

element of ‘meaningful activities’. There was an expectation from the interview and focus

group participants in the current study that activities will, if nothing else, at least be enjoyed by

residents. The qualitative study added to the understanding of enjoyment of activities in this

context. The literature mostly referred to light-hearted enjoyment and pleasure (Bishop &

Purcell, 2013; Harmer & Orrell, 2008; Nyman & Szymczynska, 2016; Roland & Chappell,

2015; Vernooij-Dassen, 2007). Interviews expanded beyond enjoyable activities being fun to

include enjoyment related to more satisfying task-related or stimulating activities.

7.1.6 Social

One of the key contributions of the qualitative study to understanding the concept of

‘meaningful activity’ is the importance of the social aspect of activities. This did not emerge

as a key attribute from the literature-based analysis but was raised by all participant groups as

a defining attribute of ‘meaningful activity’. In addition to activities that focus on socialising,

such as spending time with family and friends, other activities could be a catalyst for social

engagement with residents using them as opportunities to meet and interact with others (Olsen

et al., 2016). The current study expanded on this traditional view of the social aspect of activity

to highlight the value for some residents of simply being with and seeing others without always

actively interacting. Participating in activities with a social aspect can have the added benefit

of addressing social needs as well as relieving boredom (Cohen-Mansfield, Hai, et al., 2017).

Participating in activities involving social interaction is associated with positive health

outcomes and affect, a feeling of belonging, higher interest and pleasure for RACF residents

with dementia (Jao, Loken, MacAndrew, Van Haitsma, & Kolanowski, 2018; Junge et al.,

2018).

Different living situations can contribute to limitations on activity opportunities and lead

to different challenges for activity participation (Phinney et al., 2007). People living in RACFs,


including those with dementia, have identified social interactions and connections as key

factors in their QoL, contributing to experiences of meaning and purpose in life (Drageset et

al., 2017; Moyle et al., 2015). Loneliness and feelings of social isolation are reasonably

common among RACF residents (Andrew & Meeks, 2018; Annear, Elliott, Tierney, Lea, &

Robinson, 2017; Casey, Low, Jeon, & Brodaty, 2016). Residents with dementia are less

socially connected than people living with dementia at home (Nikmat, Hawthorne, & Al-

Mashoor, 2015). This may explain why the social aspect emerged as an attribute of ‘meaningful

activity’ in this context while it was not identified as a key attribute in the literature-based

concept analysis which included non-RACF setting literature and people without dementia.

7.2 RESEARCH QUESTION 2- WHAT IS THE QOL OF PEOPLE LIVING WITH DEMENTIA IN RACFS INDICATED BY A) ENGAGEMENT IN ACTIVITY AND B) APPARENT EMOTIONS?

A secondary analysis of data from the AusQoL study was conducted to examine QoL for

people living with dementia in RACF as indicated by activity opportunities and participation

as well as resident affect. There are multiple aspects of QoL and a range of approaches to its

measurement. Activity and affect are two observable approaches that are suitable for assessing

QoL among people living with dementia and are considered to be indicators of QoL for RACF

residents (Albert et al., 2001; Lawton, 1994b; Tak et al., 2015). Residents participating in the

AusQoL study and the qualitative study were involved in an average of six and nine activities,

respectively. This activity level is consistent with findings of a recent smaller Australian study

(Ellis, Doyle, & Selvarajah, 2016), but higher than in a Dutch study across 136 RACFs where

residents with dementia participated in an average of four activities over the previous three

days (Smit, de Lange, Willemse, & Pot, 2012). Compared to other studies, a lower proportion

of residents were reported as inactive. Only 2% of the participants in the AusQoL study were

not involved in any activities while other studies have found that between 15% and almost 50%

of residents are inactive (Buettner & Fitzsimmons, 2003; Palese et al., 2016; Smit et al., 2012).

While none of these prior studies used the AAIQOL to assess activity participation, all used

staff report.

In this study, staff retrospectively reported positive affect more frequently than negative

affect. Typically, residents showed signs of positive affect such as pleasure, interest and

contentment once or twice a week each. Participating residents, on average showed signs of

negative affect such as anger, anxiety and depression each a few times a week. This pattern of


more frequent positive affect has been reported from other studies based on staff observation

(Beerens et al., 2018; Schreiner, Yamamoto, & Shiotani, 2005). However, negative affect may

be underestimated by staff observation and interpretation as neutral expressions may be

concealing some experiences of negative emotions (Schreiner et al., 2005), particularly as

dementia progresses (van der Zon et al., 2018). This difficulty in observing and interpreting

negative affect is an important consideration given the challenges for some people with

dementia to verbally articulate their feelings, likes and dislikes (Lawton, Van Haitsma, &

Klapper, 1996). As dementia progresses, RACF staff need to increasingly rely on nonverbal

communication and observed signs of positive and negative affect to discern an individual’s

emotions and preferences and to be mindful of subtle changes that may be symptoms of

underlying psychological changes such as depression. It is also important for staff to be mindful

of transient emotional states such as brief facial expressions indicative of possibly being

confused or sad and the circumstances that appear to elicit these.

7.3 RESEARCH QUESTION 3- WHAT IS THE PERCEIVED ROLE OF ACTIVITY, INCLUDING ‘MEANINGFUL ACTIVITY’ IN THE QOL OF PEOPLE LIVING WITH DEMENTIA IN RACFS?

Research question three was primarily addressed by the Phase 3 qualitative study,

although those findings were also supported by findings of the quantitative analysis of the

AusQoL study data.

Participating in activities is generally perceived as important for people living with

dementia. Family carers of people living with dementia in the community discourage their

relative from sitting idly and encourage them to remain involved in pre-existing activities and

roles to maintain their identity (Chung, Ellis-Hill, & Coleman, 2008). A desire for ‘meaningful

activity’ is not lost after moving into an RACF with continued participation in ‘meaningful

activities’ able to provide a sense of normality (Clarke, Stack, & Martin, 2017; Kuhn et al.,

2004). Family members continue to value their relative being active and involved in activities

after moving into an RACF. In the current study, residents, family members and staff expressed

that it was important for residents to remain active and participate in ‘meaningful activities’.

The value placed on remaining active and participating in activities by participants aligns

with the theory of active ageing. Active ageing proposes that maintaining participation in

activities into older adulthood is important for a healthy life and enhances QoL (International

Longevity Centre Brazil, 2015). From this perspective activity opportunities and the support


required to enable resident activity participation are essential aspects of RACF care (Mondaca

et al., 2019). While participation in ‘meaningful activities’ was generally valued in the current

study, it is also evident that a balance between active engagement, passive engagement and

times of rest are important (Beerens et al., 2018; Drageset et al., 2017). This balance may

depend on personality traits such as extraversion (Hill, Kolanowski, & Kurum, 2010). All

participant groups in the current study acknowledged that some residents prefer to engage in

activities more passively such as watching the activity, or to not participate in group activities.

While family members and RACF staff generally encouraged active engagement among

residents, passive engagement and times of rest were considered acceptable.

All participant groups reported that participation in ‘meaningful activities’ led to positive

emotions and improved mood among residents. There was also perceived value in ‘meaningful

activities’ in maintaining function and delaying cognitive decline. The value in activity

participation perceived by the participants aligns with Kitwood’s view that participation in

‘meaningful activities’ enhances wellbeing, with a lack of participation contributing to

declining abilities and self-esteem in those living with dementia (Kitwood, 1997; Kuhn et al.,

2004). Participating in ‘meaningful activities’ can possibly move focus away from the

condition and its impact and towards feelings of empowerment (Junge et al., 2018).

Staff verbally reported improvements in dementia related behaviour changes resulting

from participation in ‘meaningful activities’. These findings are supported by previous research

that found improvements in dementia related behaviour changes by offering personally tailored

activities (Mohler et al., 2018). Analysis of the AusQoL study data also revealed relationships

between dementia related behaviour changes and overall activity opportunities and

participation. These relationships will be further discussed in the next section addressing the

factors that enable or inhibit participation in activities.

7.4 RESEARCH QUESTION 4- WHAT FACTORS ENABLE OR INHIBIT ACCESS TO, AND ENGAGEMENT IN, ACTIVITIES, INCLUDING ‘MEANINGFUL ACTIVITIES’?

The model of ‘meaningful activity’ for RACF residents with dementia developed in this

study outlined three antecedents of ‘meaningful activity’ in the RACF context. These include

activity opportunities, an enabling environment and support from family and RACF staff. The

sections below discuss the findings from all three phases of this study under these themes. The


final section will discuss additional factors measured in the AusQoL study that may enable or

inhibit access to, and engagement in, activities.

7.4.1 Activity opportunities

All participant groups in the qualitative study perceived an adequate range of activity

opportunities for RACF residents with dementia. The staff reported AAIQOL activity

opportunity scores for the residents in the qualitative study (mean of 11.7) were higher than

those reported in the AusQoL study (mean of 7.8). The residents in the qualitative study also

displayed higher activity opportunity scores, as rated by staff, than those described in previous

studies (Harmer & Orrell, 2008; Holthe et al., 2007; Mansbach et al., 2017; Tak et al., 2015).

The more activity opportunities reported for the residents participating in the qualitative study

may be related to the cognitive abilities of the residents. While all participants had dementia,

those with more severe dementia and unable to participate in an interview were excluded. As

the AusQoL findings identified that residents with severe cognitive impairment had

significantly fewer activity opportunities than residents with moderate or mild dementia, this

is likely to have contributed to the higher number of activity opportunities found in the

qualitative study.

Although the number of potential activity opportunities emerged from the qualitative

study as an important factor enabling participation in ‘meaningful activities’, this perception

was only partly supported by the findings of the quantitative analysis of the AusQoL study

data. At the individual level, the number of activities residents had the opportunity to

participate in was strongly and positively correlated with each participant’s frequency of

activity participation. However, the total number of activities provided at the RACF level (as

measured by the Policy and Program Information Form (POLIF)) was negatively correlated

with the number of activity opportunities for individual residents and was not correlated with

the frequency of participation. While these findings seem counterintuitive, the literature

suggests some potential explanations. Residents with dementia primarily depend on the

activities organised and provided by the RACF for their activity opportunities (Tak et al.,

2015). However, activity programs often do not match interests and functional or cognitive

abilities of residents with dementia (Buettner & Fitzsimmons, 2003; Kuhn et al., 2004; Tak et

al., 2015). Buettner and Fitzsimmons (2003) found that while RACFs offered many and varied

activities, many were more suitable for residents without dementia and left residents with


dementia with limited opportunities for stimulation and participation in activities. In addition,

residents with dementia need more staff support than other residents to attend and participate

in activities which can further limit their ability to participate (Tak et al., 2015). RACF staff

may rely on the central activity programs for resident activity participation (Smit et al., 2012)

even though people with dementia often require one-to-one or small group activities to

facilitate participation rather than larger group activities (Kuhn et al., 2004). Perhaps in RACFs

with a greater frequency of organised activities, the focus is on the activity program with less

emphasis and staff time available for individualised activities or individualised support during

activities that may be needed for people with dementia. In the absence of a timetable of

organised activities, activities can be more spontaneous, responding to the mood, different

interests and level of function of residents and engaging residents with dementia (Richards et

al., 2015). This more flexible and responsive approach may be more appropriate for residents

with moderate to severe dementia whose cognitive and functional abilities can fluctuate

(Richards et al., 2015).

Resident factors may also influence activity opportunities. For example, analysis of the

AusQoL study data revealed that residents with the most frequent incontinence had fewer

activity opportunities compared to residents with no incontinence or who self-manage

continence aids. There is limited prior research on the relationship between incontinence and

activity opportunities and participation in RACFs. However, several studies have explored the

association between overall ADL care needs and resident activity. Findings from these studies

indicate that as care needs or dependency increase, participation in activities and social

engagement decreases (Kang, 2012; Kolanowski et al., 2006; Kuhn et al., 2004; Palese et al.,

2016; Smit et al., 2012, 2017; van der Zon et al., 2018). Higher levels of ADL dependency

limit an individual’s capacity to independently participate in activities, and they may also

require additional assistance with activity participation (Kuhn et al., 2004). It has also been

argued that residents with more time-consuming care needs have less time for activities (Smit

et al., 2017). Thus, the overall level of care needs is a potentially limiting factor to participation

in activities, including ‘meaningful activities’, by residents with dementia.

7.4.2 Enabling environment

It has been argued that the built environment can contribute to the QoL of people living

with dementia (Fleming, Goodenough, Low, Chenoweth, & Brodaty, 2016). A suitable


environment can facilitate opportunities for participation in activity through familiarity, access

to areas and facilities for activity, the safety of those facilities and the reduction or absence of

confusing or unnecessary stimulus (Fleming et al., 2016; Smith et al., 2012). A suitable

environment is also important to support activity participation for RACF residents without

dementia (Clarke et al., 2019). These aspects of an enabling environment also emerged from

the qualitative study as factors enabling participation in ‘meaningful activities’. Family

members and staff reported that a familiar, small and contained environment that was free of

hazards and not too noisy helped residents to feel safe and comfortable, facilitating their

participation in activities. However, the quantitative analysis of the AusQoL study data did not

find any correlation between the suitability of the RACF environment for residents with

dementia (as measured by the Environmental Audit Tool (EAT)) and either activity

opportunities or the frequency of participation among residents with dementia. Having a

suitable and supportive environment will not necessarily result in it being used effectively to

improve resident care and QoL (de Boer et al., 2018). Improvements in QoL may depend more

on staff skills to optimally use the environment (de Boer et al., 2018). Staff, as well as family

support for activity opportunities and participation, will be discussed in the next section.

Another aspect of an enabling environment is the level of person-centred care and culture

within the RACF. Among the RACFs participating in the AusQoL study, person-centred care

and culture (as measured by the Person-Centred Environment and Care Assessment Tool

(PCECAT)) was not independently associated with resident activity opportunities or

participation. The lack of association between person-centred care and resident activity was an

unexpected finding, with person-centred care and related models of aged care such as the Eden

Alternative and the Montessori Method intended to address boredom and isolation among

RACF residents, including those with dementia (Brownie & Nancarrow, 2013; de Boer et al.,

2015; van der Ploeg et al., 2013). There have been mixed findings in studies evaluating the

impact of person-centred care on resident activity with some reporting increases in the number

of activities participated in or increases in social activity while others have not observed

associated changes in activity participation (Brooker, Argyle, Scally, & Clancy, 2011;

Chenoweth et al., 2009; Chenoweth et al., 2019; Li, Grandner, Chang, Jungquist, & Porock,

2017). Considering some of these seemingly counterintuitive findings provides some valuable

insights into the relationship between resident activity and person-centred culture and care.

In this study, smaller RACFs were found to have fewer activity opportunities for

individual residents than medium-sized RACFs. In addition to this, RACFs in which residents


had relatively more input into developing their unique activity plan, activity plans were

reviewed more often in conjunction with care plans and residents more frequently participated

in activities suited to their interests and needs were associated with residents in these RACFs

having fewer activity opportunities. These findings are counterintuitive in that it could be

expected that in both smaller RACFs, and in RACFs where residents have more input into

decision making about activities, residents may receive more staff attention to activity

opportunities.

Some models of care based on person-centred care principles advocate small-scale

environments and developing personalised activity plans in partnership with residents to foster

a sense of autonomy and facilitate activity participation (Boyd, Payne, Hutcheson, & Bell,

2012; de Boer et al., 2015; Walker & Paliadelis, 2016). The assumption is that involving

residents in planning will lead to participation in activities aligned with individual preferences,

a defining attribute of ‘meaningful activity’, and positive experiences of RACF life. The focus

is on activities that are tailored to individual residents. Perhaps person-centred care would be

positively associated with the level of engagement in activities or participation in activities that

are suited or meaningful to the individual resident. For example, a study evaluating the Green

Care Farm model of care for people with dementia found that residents were more actively

engaged in activities during participation compared with residents in more traditional RACFs

(de Boer, Hamers, Zwakhalen, Tan, & Verbeek, 2017). It is also possible that in RACFs where

these practices were reported more often, the activities were more targeted to each individual

resident. More targeted activities may mean that residents were not given opportunities to

participate in activities that were not suitable, interesting or meaningful to them and therefore,

limiting overall activity opportunities. In this case, additional activity opportunities would not

necessarily be desirable. Therefore, person-centred approaches to care, while they do not

necessarily create environments that enable more frequent overall activity participation among

residents, are likely to enable participation in ‘meaningful activities’.

Participants in the qualitative study generally perceived dementia-specific units as care

settings that contributed to the enablement of participation in ‘meaningful activities’.

Interestingly, in the AusQoL study, residing in a dementia-specific unit was associated with

having fewer activity opportunities but a similar frequency of overall activity participation

compared with residents living in integrated areas of the RACFs. Specially designed activity

programming and spaces for activities are usually seen as central features of the care provided

in dementia-specific units (Abbott, Sefcik, & Van Haitsma, 2017; Lai, Yeung, Mok, & Chi,


2009; Mentes & Buckwalter, 1998; Reid & Chappell, 2003). Again, the specially designed

activity programming in dementia-specific units may mean that activity opportunities are more

targeted to the abilities of the residents rather than a broader range of opportunities that may

be available in integrated areas of RACFs. Suitable activity opportunities (Kang, 2012; Tak et

al., 2015) and a suitable environment are likely to enable activity participation of residents with

dementia, particularly in activities that are meaningful.

7.4.3 Family and staff support

In general, among residents participating in the AusQoL study, those with poorer health

and more severe impairments and care needs had less frequent activity participation. It has been

suggested that inadequate staffing levels in RACFs are a barrier to activity participation for

those residents requiring more assistance (Kang, 2012). In RACFs with a high ratio of DT

hours for each resident, residents had significantly more activity opportunities than those in

RACFs with a low ratio of DT hours to residents. This finding is not surprising given that these

staff are primarily responsible for creating and facilitating activity opportunities for residents

in Australian RACFs (Reid & Chappell, 2003; Richards et al., 2015; State of Victoria

Department of Health, 2010). However, no relationship was found between overall staff or DT

staff hours to resident ratio and activity participation. The absence of a relationship between

activity participation and staff to resident ratios reflects the complexity and challenges of the

RACF environment as simply having more staff does not necessarily increase participation in

activities. The skills and capacity of staff may be more important as it has been found that

higher educational levels among staff and a perception of fewer job demands are associated

with higher resident activity involvement (Smit et al., 2017). Having dedicated staff, for

example, OTs, with specific skills in how to assess, determine, plan and deliver resident activity

preferences, may increase overall capacity to offer ‘meaningful activities’ to more residents

more often.

Staff may require specific training in relation to activity programming and the support

they may offer to facilitate activity participation in residents with dementia, particularly those

with more severe dementia (Kuhn et al., 2004). Training could address the importance of

knowing the individual to help identify their interests and skills as well as identify and adjust

suitable activity opportunities where their level of cognitive impairment makes this difficult to

do without support (Han et al., 2016b; Richards et al., 2015; Smit et al., 2017). Specific


strategies used to get to know individuals included talking to the person with dementia and

their family members, offering a range of activity opportunities for the person to choose from,

referring to the person’s care plan when in a care setting and reading the person’s mood and

response to activities (Han et al., 2016b; Richards et al., 2015). RACF staff may also benefit

from education about the therapeutic value of activities and training in various types of

activities and how to integrate activities into the daily care routine outside of the organised

activity program (Smit et al., 2017). RACF staff have reported that while they value dementia

training they primarily learn on the job about strategies for working with people with dementia

(Mavromaras et al., 2017). Care staff also focus on personal qualities such as patience and

empathy as being important for providing quality care and support for residents rather than

specific work-related skills or knowledge (Mavromaras et al., 2017).

There are likely gaps in support for activity participation for certain groups of RACF

residents. One of these groups is residents whose preferred language is not the dominant

language in the country they live in. People with dementia often prefer to listen to music and

watch television in their native language while communication difficulties arising from not

speaking the dominant language can lead to RACF residents withdrawing themselves from

others and preventing them from attending activities (Kong, Deatrick, & Evans, 2010;

Rosendahl, Soderman, & Mazaheri, 2016). This response to language barriers can sometimes

be misinterpreted by staff as the resident’s preference for being an introvert (Rosendahl et al.,

2016). Family members often serve as translators between residents and RACF staff but they

have expressed the need for bilingual staff to facilitate communication when they are not

present (Kong et al., 2010; Rosendahl et al., 2016; Runci, O'Connor, & Redman, 2005). A

study involving 126 RACFs in Melbourne, Australia found that while most RACFs had at least

one resident who preferred a language other than English, only 60% had any staff who could

speak to residents in their own non-English language and only 35% provided language-relevant

activity programs (Runci et al., 2005). This gap in support for these residents was reflected in

the finding that residents participating in the AusQoL study who preferred a language other

than English had significantly fewer activity opportunities and less frequent participation than

residents who preferred English.

Another group of residents requiring support for activity participation is residents with

dementia. Among residents participating in the AusQoL study, more severe cognitive

impairment was associated with having fewer activity opportunities and less frequent

participation. These findings are consistent with previous research findings that residents with


severe dementia spend less time participating in activities and are more likely to be inactive

than those with less severe cognitive impairment (Buettner & Fitzsimmons, 2003; Edvardsson,

Petersson, Sjogren, Lindkvist, & Sandman, 2014; Kolanowski et al., 2006; Kuhn et al., 2004;

Smit et al., 2017; Smit et al., 2016). Residents with any cognitive impairment are also more

likely to be inactive than residents without cognitive impairment (Palese et al., 2016).

The fewer activity opportunities of residents with more severe cognitive impairment may

be related to difficulties in self-initiating and sustaining activity, and the need for staff to set

up and model activities (Cohen-Mansfield, Thein, Dakheel-Ali, & Marx, 2010; Kolanowski et

al., 2006; Kuhn et al., 2004; Wood, Harris, Snider, & Patchel, 2005; Wood, Womack, &

Hooper, 2009). It has been found that, when approached by an activity staff member about

participating in a group activity, most residents with dementia are either asleep or doing nothing

but few will refuse to attend the activity (Cohen-Mansfield & Jensen, 2018). Those with

moderate or severe dementia have been found to need assistance to initiate activity at least 50%

of the time (Regier, Hodgson, & Gitlin, 2017). People with dementia may require ongoing

personal invitations to attend activities as it has also been found that participation levels

decrease when individual prompts are discontinued (Cohen-Mansfield & Jensen, 2018).

Residents with dementia often require ongoing support during activity participation. Staff-

resident interactions including cueing and redirection need to be maintained during the activity

for participation to be sustained (Brenske, Rudrud, Schulze, & Rapp, 2008; Regier et al., 2017;

Wood et al., 2005; Wood et al., 2009). Ensuring that adequate and appropriate staff are

available to provide activities, and that specific attention is given to the types of encouragement

and support individual residents need to attend, and to remain in, any particular activity is

important for enhancing participation.

7.4.4 Additional factors

There are a range of additional factors that were identified in this study as being

associated with resident activity opportunities and participation. While it is not possible to

conclude causation from the AusQol study as the data was cross-sectional some potential

enablers, inhibitors and consequences of participation in activity have been identified. The

perceptions of the staff, family and residents with dementia as well as existing literature provide

some insights into these associations.


This study found that staff reported signs of depression was an important factor

associated with having fewer activity opportunities and less frequent participation. This

association between depression and activity participation has been found elsewhere with RACF

residents with dementia (Beerens et al., 2018; Dobbs et al., 2005; Siedlecki et al., 2009; Smit

et al., 2012; van der Zon et al., 2018). On the other hand, if residents who are depressed are

encouraged to participate in ‘meaningful activities’, their mood may improve. Participation in

social activities, ‘meaningful activities’ or activities that help residents maintain past roles have

been recommended as key nonpharmacological interventions for treating depression in RACF

residents (American Geriatrics Society & American Association for Geriatric Psychiatry, 2003;

Guideline Adaptation Committee, 2016; Meeks & Depp, 2003; O'Connor, Ames, Gardner, &

King, 2009). Intervention studies examining the effects of individualised activity programs

have shown significant improvements in depressive symptoms in residents with and without

dementia (Bailey, Stevens, LaRocca, & Scogin, 2017; Jung, Park, & Kim, 2018). It has been

suggested that increased time spent with staff as part of any psychosocial interventions

including individualised activity programs may contribute to decreases in depressive symptoms

in addition to any effects of the intervention itself (Bailey et al., 2017; O'Connor et al., 2009).

These findings are consistent with the findings of the current study. RACF staff, families and

residents highlighted the importance of the social aspect of activities. It is also theoretically

plausible that depression is a barrier to residents engaging in activities given some of the

symptoms of depression, including withdrawal and lack of interest (Achterberg et al., 2003).

Family members participating in the qualitative study reported that residents often lacked the

motivation to participate in activities and approximately half of those residents had some

degree of staff-assessed depression.

Another characteristic of residents with dementia that was associated with activity

opportunity and participation was the expression of verbal behaviour. Residents who exhibited

some non-aggressive verbal behaviour had more activity opportunities and more frequent

participation than those who did not exhibit the behaviour. Participation in activities is

promoted as a key non-pharmacological intervention for managing verbal behaviours in people

living with dementia and in RACFs (American Geriatrics Society & American Association for

Geriatric Psychiatry, 2003; Guideline Adaptation Committee, 2016; Hill et al., 2010; von

Gunten et al., 2008). It is also possible that exhibiting non-aggressive verbal behaviour makes

RACF staff more aware of the resident and their potential needs as previous research has shown


that residents whose demands or needs are more apparent receive more input and support from

RACF activity staff (Backhouse et al., 2016).

Although aggressive verbal behaviour was not a significant variable in either regression

model, bivariate analyses indicated that residents who did not exhibit aggressive verbal

behaviour participated in activities more often than those who did exhibit the behaviour. The

literature suggests that verbally disruptive behaviour can lead to negative responses from other

residents, avoidance by staff, removal from traditional activity programs and subsequent

isolation and inactivity (Backhouse et al., 2016; Buettner & Kolanowski, 2003; McMinn &

Draper, 2005; von Gunten et al., 2008). These findings could suggest that non-pharmacological

strategies for managing behaviours such as participation in activities may be difficult to

implement with residents whose verbal behaviour is aggressive. In fact, it has been

recommended that these non-pharmacological approaches to managing behaviours are not used

as the initial approach when the behaviours cause danger to residents or others (American

Geriatrics Society & American Association for Geriatric Psychiatry, 2003), which may be

perceived if the verbal behaviours are aggressive.

The intensity of wandering behaviour was another resident characteristic found to be

associated with activity participation. There is limited research on potential relationships

between dementia-related wandering and activity involvement. Wandering behaviour is

characterised by frequent repetitive walking, that occurs day and night with distinct pattern

(lapping, pacing and random) and problems navigating that is associated with adverse

outcomes (Algase, Moore, Vandeweerd, & Gavin-Dreschnack, 2007). While it is possible that

wandering behaviour may make it difficult for residents to stay engaged in activities (Volicer,

van der Steen, & Frijters, 2013), findings from this study indicate that residents who were

perceived to wander with greater intensity participated in activities more frequently. Like

residents who exhibit non-aggressive verbal behaviour, the needs of these residents may be

more obvious to staff because they are more visible in the RACF throughout the day if they are

moving about in public areas. In a recent descriptive observational study, residents with severe

dementia were found to spend more of their time walking in areas that were considered as

public space (hallways, lounge room and dining room) (MacAndrew, Fielding, Kolanowski,

O'Reilly, & Beattie, 2017). This trend could result in these residents being seen more frequently

in areas where activities are being conducted which is then interpreted by staff as participation

in the activity. However, simply being physically present during an activity is insufficient

evidence of meaningful engagement.


Nutritional status is another resident characteristic associated with activity opportunities

in residents with dementia. Residents with poorer nutritional status had fewer activity

opportunities than those residents with normal nutritional status. Undernourished residents may

have less energy, poorer concentration and be more irritable, particularly if they are hungry

and thirsty. Particular attention needs to be paid to undernourished residents to improve their

food and fluid intake and determine the types of activities that they prefer and can be

encouraged to be involved in. Staff carers in dementia-specific units have suggested that

increased levels of overall activity participation lead to residents with dementia eating more

(Nell, Neville, Bellew, O'Leary, & Beck, 2016). Aromas of food can stimulate appetite

(Murphy, Holmes, & Brooks, 2017). Participating in activities that involve food may stimulate

an interest in eating and drinking in the residents involved (Murphy et al., 2017). Nutritional

status was not discussed by participants during interviews, but mealtimes were raised as a

‘meaningful activity’ in the context of facilitating social interaction between residents.

Increased attention to the milieu of mealtimes and the opportunities for meaningful engagement

involving socialisation over shared food may arguably assist in improving nutritional intake

(Lea, Goldberg, Price, Tierney, & McInerney, 2017).

7.5 RESEARCH QUESTION 5- WHAT STRATEGIES ARE USED BY STAFF TO A) IDENTIFY ACTIVITIES MEANINGFUL TO INDIVIDUAL RESIDENTS AND B) CREATE OPPORTUNITIES FOR RESIDENT ENGAGEMENT IN THESE ACTIVITIES?

The qualitative study provided insight into the strategies used by RACF staff to identify

‘meaningful activities’ and support residents to participate in these activities.

Many residents with dementia need support to enable them to participate in activities,

including ‘meaningful activities’ (Han et al., 2016b; Harmer & Orrell, 2008; Phinney et al.,

2007; Tak et al., 2015). Yet most residents interviewed did not perceive their physical or

cognitive impairments to be limiting their ability to participate in activities. As the residents

participating in this study did not have severe levels of cognitive impairment it may be that the

support for activity participation they were receiving was at a low and unobtrusive level. It is

also possible that the support provided to residents, such as to identify ‘meaningful activities’

and modify activities to suit each person’s abilities, made it easier for residents to participate

in activities, regardless of impairments. Support that reduces the difficulty of activity

participation for the person living with dementia can make the condition feel less intrusive and


limiting in their lives (Phinney, 2006). The support provided by family and staff is important

to reduce the impact of impairments and enable residents with dementia to participate in

‘meaningful activity’ and have a positive experience of that participation.

How an individual RACF structures the provision of activities influences the types of

support provided by staff for residents to participate in activities, including ‘meaningful

activities’. The organisation of RACF activities can be understood on a continuum. It ranges

from the traditional provision of timetabled activities and staff support for residents to

participate in those activities to a day-to-day approach where activities are initiated

spontaneously in response to resident interests and mood on that given day with no scheduled

activities (Richards et al., 2015). While all four RACFs participating in the qualitative study

had organised activity programs, staff discussed the need for flexibility in how activities were

delivered and in responding to residents’ interests and needs. Flexibility in activity provision

and support has been proposed as an important strategy when using participation in

‘meaningful activity’ to prevent or address dementia related behaviour changes (Backhouse et

al., 2016; Foley, Sudha, Sloane, & Gold, 2003). However, staff in the current study, as well as

in previous research (Backhouse et al., 2016), focused on flexibility in relation to changes in

resident interests and support needs rather than to address specific behaviours. The flexible

approach to activities may still be within the structure of pre-organised activities, for example,

facilitating a reminiscence group and allowing the natural conversations of the participating

residents to dictate the topic of discussion. Flexibility could also involve initiating and

supporting activities for individual residents separate from the activity program. The flexible

approach may be more suitable for residents with moderate to severe dementia and for activities

to address dementia related behaviour changes (Backhouse et al., 2016; Richards et al., 2015).

Declining memory and language skills can limit a resident’s ability to verbalise

preferences (Mesman, Buchanan, Husfeldt, & Berg, 2011). While family members in the

current study felt that difficulties verbalising preferences made it difficult to know whether an

activity was meaningful, staff were confident that they had the experience to make that

assessment based on the resident’s body language and facial expressions. The staff

participating in this study had experience working with people with dementia, with two-thirds

reporting that they had worked in aged care for at least six years. The different perspectives of

family members and staff reflect findings of a recent study where family members of people

with dementia and activity staff were asked about whether the person with dementia liked a

range of activities (Cohen-Mansfield, Gavendo, et al., 2017). Staff reported knowing whether


the person liked the activity for more of the activities compared with reporting by family

members. This confidence to identify preferred activities may be influenced by staff spending

more time with the residents than family members in general as well as being with residents

during activity participation or seeing them involved. Family members participating in this

study spent a median of ten hours with the resident in the previous month. Family members

often have an understanding of the resident’s past activity preferences while RACF staff are

likely to be more familiar with current preferences (Van Haitsma et al., 2015). While RACF

staff who provide direct care for residents are recognised as valuable informants, consultation

with multiple people who know a resident, including family members, as well as residents

themselves will have the greatest benefit for understanding resident preferences and routines

(Molony, Kolanowski, Van Haitsma, & Rooney, 2018).

Staff learn from experience how to identify ‘meaningful activities’ for residents and read

responses from residents (Mondaca et al., 2019; Richards et al., 2015). Some strategies used

by staff where residents were unable to verbalise preferences include consulting family

members, trial and error, providing a range of varied activity options and making informed

guesses based on a resident’s gender or past experiences with similar residents (Han et al.,

2016b; Mesman et al., 2011). Staff in the current study also reported using these strategies for

identifying ‘meaningful activities’. While it is possible that these approaches may exclude

residents and disregard their abilities to make activity choices (Han et al., 2016b; Mesman et

al., 2011), staff in this study recognised that residents, even with severe dementia, were able to

make activity choices. While it required attention to detail to understand how each resident

expressed these preferences, staff did not frame it as a challenge but something their experience

working with people with dementia had equipped them to do.

7.6 SUMMARY

This chapter has discussed the key findings of this study, integrating the findings of the

three phases as they relate to each research question. It is clear from this study that activity

among RACF residents with dementia is an important indicator of QoL. Less frequent activity

participation among certain groups of residents, such as those with severe cognitive impairment

or depression, suggests QoL for these residents could be improved. Participation in activities,

especially those that are meaningful, is valued by residents themselves as well as their family

members and RACF staff. For RACF residents with dementia, ‘meaningful activities’ are


activities that are suited to the person’s unique abilities and interests, related to a personally

relevant goal and linked to an aspect of their identity. These attributes of ‘meaningful activity’

suggest that supporting residents to participate in these activities is one practical approach to

implementing person-centred care. ‘Meaningful activities’ are also enjoyable, engaging and

have a social aspect.

This study has identified a range of factors that enable or inhibit engagement of RACF

residents with dementia in activities, including ‘meaningful activities’. Activity opportunities

suited to each person are important. With impairments often limiting residents’ abilities to

initiate and maintain activity participation, the activity opportunities are often limited to those

organised by the RACF, using either an activity calendar or staff to facilitate activity

participation among residents. All three phases of this study revealed that RACF residents with

dementia need to be supported and enabled to participate in activities. An enabling environment

is one that is familiar to residents, allowing them to participate in activities safely and

comfortably. Support from family and staff is important to identify potentially ‘meaningful

activities’, initiate activity participation and adapt or modify activities to suit residents’ abilities

and interests. There may be gaps in support for resident activity participation, indicated by less

frequent activity participation among residents who may have higher care and support needs

such as those with more severe cognitive impairment and severe depression, or who prefer to

speak a language other than English. Providing additional support and consideration to these

residents may increase their activity participation and improve their QoL.

The following chapter will provide a conclusion including the strengths and limitations

of this study, implications for practice and areas for future research that have been identified.

Chapter 8: Conclusion 253

Chapter 8: Conclusion

This concluding chapter briefly recounts the main findings of the study. Following this,

the main implications for policy and practice and suggestions for future related research will

be considered.

Person-centred care is the dominant philosophy underpinning approaches to the care of

people with dementia (Brooker, 2004; Brownie & Nancarrow, 2013; Kitwood, 1997). From a

person-centred perspective it is important to consider what makes activities meaningful for

people with dementia in addition to their presence at, and participation in activities, meaningful

or otherwise. It is also valuable to understand the perceived conditions needed for participation

in ‘meaningful activities’ and the outcomes of participation. In previous literature, the term

‘meaningful activity’ has been used extensively in relation to people with dementia. However,

a comprehensive definition of what the concept of ‘meaningful activity’ means and what

factors contribute to an activity being meaningful to the person with dementia in RACFs had

not been explored.

The main findings of this study were used to develop a model of ‘meaningful activity’

specific to those living with dementia in RACFs (Figure 8.1). The model illustrates the key

characteristics of ‘meaningful activity’, linking these with the antecedents and consequences

of the concept. Specific activities that are meaningful are different for each person as they need

to be suited to individual interests and abilities, linked to an aspect of identity and allow the

person to pursue a personally relevant goal. ‘Meaningful activities’ also need to be engaging,

enjoyable and have a social aspect. As discussed in the previous chapter, the qualitative study

helped to further refine the defining attributes of ‘meaningful activity’ identified from the

existing literature as they relate to RACF residents with dementia. A significant contribution

that this study has made is the identification of the social aspect of activities as being a defining

attribute of ‘meaningful activities’, which was not evident in the existing literature. The

importance of the social aspect of activities in the context of RACF residents with dementia

highlights the challenges for residents to develop and maintain social connections.

In the RACF context, residents with dementia need activity opportunities, an enabling

environment and appropriate support to participate in ‘meaningful activities’. These

antecedents of ‘meaningful activity’ in the final model did not differ greatly from those


identified in the existing literature but there was a stronger emphasis on the need for an enabling

environment and support from others, reflecting the cognitive and physical impairments

experienced by many residents. The findings of the AusQoL study both support and add to the

model, as explored in the previous chapter. For example, the importance of an enabling

environment and support for resident activity participation was reinforced by residents with

poorer health, more severe impairments and various dementia related behaviour changes

having fewer activity opportunities and less frequent activity participation. Participation in

‘meaningful activities’ was valued for facilitating opportunities to socialise, maintaining

function and health as well as benefits for emotional wellbeing and a sense of normality. These

findings are similar to the consequences of ‘meaningful activity’ identified in the literature.


Figure 8.1. Model of ‘meaningful activity’ for RACF residents living with dementia

Antecedents




Consequences

Increased involvement Sense of normality Improved health

Meaningful activity

Suited to the

individual

Engaging

Enjoyable

Goal-related

Linked to identity

Social

Care Environment


8.1 IMPLICATIONS FOR POLICY AND PRACTICE

The findings of this study have the potential to impact the care of RACF residents with

dementia. First, there are specific groups of residents who are more likely to have fewer activity

opportunities and less frequent participation. Resident characteristics with the greatest impact

on activity participation were the severity of cognitive impairment and depression. Residents

with more severe cognitive impairment, severe depression, mild pain or who exhibited

aggressive verbal behaviour or wandering behaviour had less frequent activity participation.

RACF staff need to give special attention to residents with these characteristics to ensure that

they have suitable activity opportunities and the supports they require to participate in

activities. Support from family members and RACF staff as well as an enabling environment

were identified as important antecedents of resident participation in ‘meaningful activities’.

Staff also need to be mindful of residents whose needs are less apparent such as those who do

not exhibit non-aggressive types of verbal behaviour or are less visible in the RACF

environment.

This study suggests a need for balance between providing activity opportunities through,

for example, scheduled activity calendars and more flexible approaches including tailoring

activities and providing individualised support. When asked about ‘meaningful activities’,

participants in the qualitative study focused on the activities provided as part of the activity

calendar. Scheduled activities can be particularly important for residents with dementia who

have difficulty initiating activities themselves (Tak et al., 2015). However, analysis of the

AusQoL study data found an inverse relationship between activity provision at the RACF level

and the activity opportunities for individual residents with dementia. This finding challenges

the value of planning and implementing a structured and broad scheduled activity calendar.

As discussed in the qualitative study, residents with dementia often require support to

enable participation in ‘meaningful activities’. The needs and abilities of individual residents

with dementia require comprehensive assessment to facilitate the planning and delivery of

suitable individual and group activities (Kuhn et al., 2004). RACF activity provision includes

activities provided for residents with and without dementia. These activities are not necessarily

suited to the needs and abilities of residents with cognitive or physical impairments. Activities

offered as part of a structured calendar have the potential to be meaningful to residents as they

often provide opportunities for social connection, but they must also be enjoyable and

engaging, aligning with the individual’s interests and suited to their abilities. Therefore, while

activity calendars can be a valuable way to organise and plan activities in the RACF context,


without support and tailoring of activities to the needs and interests of individual residents with

dementia, activity calendars alone will not be adequate for facilitating participation in activities

and, in particular, ‘meaningful activities’.

The findings of the current study also suggest that it is important to regularly review

actual activity participation patterns of residents as participation is not necessarily guaranteed

by providing a varied and comprehensive activity calendar. In line with this, actual activity

participation, level of engagement in the activity and resident perceptions of the activities are

arguably important quality indicators in RACFs relative to the understanding of perceived QoL

by residents with dementia. Consideration of the quality of activity uptake rather than the type,

variety and frequency of available activities is important as well as the stability of meaningful

engagement in any specific activity, that is, for example, does meaningful engagement last a

matter of days, weeks or is sustained over months or longer. These considerations can assist

staff to respond proactively to activity offerings for residents.

There is broad interest in person-centred care and a desire to use approaches to care

informed by this philosophy when caring for people with dementia. The individualised nature

of ‘meaningful activities’ suggests that facilitating participation in these activities is one

practical approach RACFs can use to implement person-centred care. The key attributes of

‘meaningful activities’ identified in this study, such as an activity being enjoyable and

engaging, can be used by those involved in caring for and supporting RACF residents with

dementia to identify potentially suitable activities. Understanding the characteristics of

activities that are meaningful can guide family members and RACF staff to provide activity

opportunities that address these attributes and consider the supports needed to facilitate resident

participation in these types of activities. For residents with dementia, many of whom have

difficulty with independent participation, it is important to understand the type and extent of

assistance required for participation that is most likely to confer meaning for individual

residents. With recognition that the specific activities that individual residents perceive as

meaningful may change over time, RACFs need to create systems and opportunities to identify

and monitor ‘meaningful activities’ and make changes as necessary to the activities offered and

the support provided.

The emphasis on using person-centred principles in the care of people with dementia is

also related to the focus on activities that are preference driven (Cohen-Mansfield, Gavendo,

et al., 2017), individualised (Van Haitsma et al., 2015) or tailored (Gitlin et al., 2008; Gitlin et

al., 2009; Kolanowski et al., 2011). While this importantly acknowledges the value beyond


activities merely occupying someone, the findings from this study pose additional factors to be

considered. Many of the studies evaluating ‘tailored’ or ‘individualised’ activities for people

with dementia involve prescribing activities for an individual, usually for participation on their

own or in a one-on-one context with a carer (Cohen-Mansfield, Gavendo, et al., 2017; Gitlin

et al., 2008; Kolanowski et al., 2011). The findings of the current study highlight the importance

of the social aspect of activities for them to be meaningful for RACF residents with dementia.

While this socialisation could come from one-on-one activities with staff, the value of being

with others their own age and ability level was also highlighted as being important. Therefore,

there is still value in group-based activities. In addition to this, the focus of residents, family

and staff on the activities provided as part of the RACF activity calendar suggests that relying

on individually tailored activities for each resident on every occasion would limit activity

opportunities. Relying on that approach to activity provision in RACFs would also be

unsustainable, requiring a significant amount of staff, family or volunteer time to facilitate

activity opportunities and participation for individual residents with dementia. This would be

problematic given that even with the current models of RACF activity provision that combine

activity calendars, flexibility and individual support, participants identified limited staff

capacity as one limitation on residents participating in ‘meaningful activities’.

The value placed on the social aspect of ‘meaningful activities’ in the qualitative study

has some additional implications for the care and support of residents with dementia. While

the types of activities residents participate in are important, residents could benefit from greater

emphasis on strategies to facilitate social interactions and address social needs through activity

participation. Taking into account the limitations on staff time (Clarke et al., 2019), perhaps

staff could identify ways to facilitate social connections between residents through shared

activities. One strategy that staff could use to encourage social connections through activity

could be to match residents with other residents who have similar interests (Mondaca et al.,

2019). This may be difficult for some residents, particularly those whose preferred language is

not English or who have apathy, depression or severe dementia impacting their motivation and

communication ability. However, facilitating these interactions where possible would address

the concern of some residents and family members that there was often a lack of other residents

with the cognitive abilities to allow satisfying social interactions, particularly for those living

in dementia-specific areas.

The findings of this study suggest that social needs are highly subjective, and the social

aspect of activities is not limited to the obviously social activities such as getting together with


family and friends. Other activities can facilitate social connections by residents participating

alongside others. Again, this was different for each resident with some likely to benefit from

one-on-one activities or very small groups while others may be able to cope with bigger groups

or find value in simply seeing others in the room. While an emphasis on the social aspect of

activities is important, it needs to be guided by a person-centred approach that acknowledges

that social abilities, needs and preferences vary.

8.2 STRENGTHS AND LIMITATIONS

8.2.1 Phase 1- Literature-based concept analysis

The literature-based concept analysis of ‘meaningful activity’ has several limitations. It

is important to acknowledge that concepts are not fixed and how they are understood will likely

change over time (Walker & Avant, 2011). The findings of this concept analysis, like any, is

subject to scrutiny as it is used and changes over time as more evidence becomes available in

the field of inquiry. Also, as the analysis is based on existing literature, there may be gaps in

the understanding of the concept and limitations in the use of the findings in areas where there

are gaps in the existing literature. For example, most of the existing ‘meaningful activity’

literature is based on qualitative studies. Therefore, while the model proposed from these study

findings links a range of outcomes to ‘meaningful activity’ participation, these are primarily

outcomes that are perceived by the participants of the various studies, rather than outcomes

that have been measured in intervention studies. There were some quantitative studies included

in the concept analysis (Conti et al., 2008; Goldberg et al., 2002; Gori et al., 2001) but these

studies used limited definitions of ‘meaningful activity’. These studies (Conti et al., 2008;

Goldberg et al., 2002; Gori et al., 2001), as well as studies focusing on tailored or individualised

activities (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al.,

2015) have shown positive outcomes from participating in these types of activities. Intervention

studies using the more comprehensive definition of ‘meaningful activity’ identified in this

concept analysis would provide a better understanding of the outcomes of ‘meaningful activity’

participation and inform the planning and provision of ‘meaningful activities’.

Despite these limitations, concept analyses provide valuable insights that help to clarify

vague concepts (Walker & Avant, 2011). ‘Meaningful activity’ is a term that continues to be

frequently used in the literature without being clearly or consistently understood or defined.


This means that studies going forward cannot be benchmarked against a common

understanding and descriptions and measures remain predominantly atheoretical. It is a

strength of the concept analysis process that a robust procedure for the analysis was used and

the literature was drawn from a broad range of fields, settings and populations to better

understand the concept. These findings will help to move discussion forward in this area and

provide a stronger foundation for future research and further conceptual validation.

8.2.2 Phase 2- Secondary quantitative analysis of the AusQoL study data

The quantitative analysis of the AusQoL study data contributes to understanding activity

opportunities and participation as well as affect among people living with dementia in RACFs.

The AusQoL study was the first to comprehensively explore QoL in a nationally representative

sample of residents with dementia in Australian RACFs (Beattie et al., 2015; Fielding et al.,

2015). There have been previous studies exploring the relationship between activity

participation and a range of RACF and resident characteristics such as small-scale

environments, depression and wandering behaviour (Siedlecki et al., 2009; Smit et al., 2012;

Volicer et al., 2013). It is a strength of the AusQoL study that, rather than considering

characteristics in isolation, data was collected on numerous characteristics from a range of

sources including RACF policies, RACF-held resident-specific clinical records and staff report

of resident health and care. This allowed for the development of regression models to determine

the amount of variance in activity opportunities and participation and resident affect that can

be explained independently by the RACF characteristics, resident demographic, health, care

and dementia related behaviour characteristics. In addition to this, while the provision of

activity opportunities at the RACF level has previously been explored (Buettner &

Fitzsimmons, 2003), little was known about activity opportunities for individual residents. The

current study has provided valuable insight into this aspect of QoL and care for RACF residents

with dementia.

One limitation of the analysis conducted in Phase 2 of this study is the missing AusQoL

study data. Of the 446 residents who participated in the AusQoL study, 50 were excluded from

this analysis because of missing activity opportunity data. For most demographic

characteristics, there was not a significant difference between the residents who were included

and those who were excluded. Among the residents who were excluded, a significantly higher

proportion preferred a language other than English compared to the residents who were


included in this analysis. However, in both groups the majority still preferred English. There

was also some missing data for individual variables in the included dataset. One example of a

variable with a large amount of missing data was wandering. Data about wandering behaviour,

using the RAWS, was only collected about residents who were ambulant, therefore excluding

many residents with more severe impairments. Wandering data was available for 263 of the

396 residents. To deal with large amount of missing data for the wandering variable, regression

models were developed and reported separately with and without wandering. The sample size

for each analysis has been reported in the relevant tables in Chapter 5.

The approach to measuring the frequency of activity participation in the AusQoL study

using the AAIQOL has some limitations. Staff reported resident participation in specific

activities as either none, less than three times a week or three or more times a week (Albert et

al., 1996). This type of measurement meant that a resident who participated in one activity for

several hours each day would score the same as another resident who participated in one

activity for three brief periods in a week or a resident who participated in two separate activities

once a week each.

Another limitation of the AAIQOL is the potential overestimation of the frequency of

participation in several of the activities. Watching television or listening to the radio were

among the activities most commonly participated in by the AusQoL study participants. Smit et

al (2017; 2016) suggested that participation in watching television or listening to the radio may

be overestimated when using staff report as staff often report residents participating in these

activities when they are on in the background and not just when residents are actively involved

in the activity. In that study, the reported duration of participation in activities such as watching

television was considered extreme with some residents reported to watch television for more

than 24 hours over a three-day period. Using the AAIQOL to measure activity participation

rather than the duration of participation is less likely to be sensitive to the inclusion of passive

forms of activity participation. For example, a single period of activity participation as reported

by a staff member using the AAIQOL may involve active participation or include both passive

and active forms of participation. The value of passive participation in activities such as

television watching for people with dementia is unclear (Gustafsdottir, 2015) although

participants in the qualitative study suggest this may be a valid and valuable form of activity

participation for some people. There is no way to differentiate between active and passive

participation using the AAIQOL, and it is possible that some staff respondents reported only

active participation while others reported both.


However, using the AAIQOL to measure activity participation ameliorated some

limitations of other approaches to retrospectively reporting activity participation. For example,

reporting the specific number of times an activity was participated in or the duration of

participation would likely be inaccurate when done retrospectively. Unlike other studies, which

focus on the number of activities participated in (Ellis et al., 2016; Smit et al., 2012), the

AusQoL study, using the AAIQOL also measured the frequency of participation and whether

it was enjoyed. These aspects of the AAIQOL allow for a more detailed understanding of

resident activity participation. In the absence of sufficient resources to undertake systematic

observation of resident activity participation in this large-scale study, the approach to

measuring activity participation using the AAIQOL is adequate. Another strength of the

AAIQOL is that the use of staff report data allowed for the inclusion of residents with mild to

severe dementia. Self report data was also collected in the AusQoL study but only for residents

with MMSE scores of ten or above so excluded residents with more severe dementia. Among

residents participating in the AusQoL study, 34% were deemed as ‘unable to complete’ the

MMSE and 18% obtained a score less than 10, indicative of severe cognitive impairment

(Beattie et al., 2018). Therefore, the use of staff report data allowed for the inclusion of

approximately 200 additional residents who would not have been included if using self report

data.

The AusQoL study used a cross-sectional design which did not allow for definitive

conclusions about the causal relationship between activity and resident and RACF

characteristics. This is an issue in relation to potentially modifiable characteristics such as

dementia related behaviour changes, resident function and health. It is unclear whether the

focus should be on facilitating activity opportunities and participation, reducing behaviours or

improving function and health. However, regardless of the direction of these relationships,

maximising suitable activity opportunities and participation for residents with dementia is a

positive and practical aspect of care that is valued by residents themselves as well as their

family members and RACF staff.

8.2.3 Phase 3- Qualitative study

The analysis of data from the qualitative study was guided by the defining attributes,

antecedents and consequences of ‘meaningful activity’ identified in the existing ‘meaningful

activity’ literature through the Phase 1 literature-based concept analysis. A strength of this


approach is that it adds support for the relevance of the concept of ‘meaningful activity’ and

builds on what is already known about the concept in different populations and settings (Sadler,

2000; Walker & Avant, 2011). The qualitative study focused on people living with dementia

in RACFs so applied the concept to this specific context. While the findings from the literature

were used as a guide, the themes were not adhered to rigidly, with some modified or combined

and new themes added. Areas of agreement and disagreement between the two datasets were

explored. This process helped to identify themes of particular relevance for RACF residents

with dementia such as family and staff support, the social aspect of ‘meaningful activities’ and

the sense of normality that results from participating in these activities. While this is a strength

of the study, the findings are limited somewhat by the gaps in the existing literature. One gap

is that most studies, including the current Phase 3 study, explore ‘meaningful activity’ using

either qualitative methods or quantitative surveys. The model developed from these findings is

based on the reported rather than observed or empirically measured consequences of

‘meaningful activity’ participation. However, with a better understanding of what makes

activities meaningful for people living with dementia in RACFs, future intervention studies

could explore in more detail the consequences reported by the participants of this study.

While the discussion of ‘meaningful activities’ is not new in the literature, a strength of

this study is that it included perspectives of RACF residents with dementia, their family

members and RACF staff. This allowed for comparisons between these three perspectives to

be made, and these new understandings have valuable implications for care and support for

residents with dementia. Harmer et al (2008) have explored the differing perspectives on

‘meaningful activity’ among these groups in the UK but with different inclusion and exclusion

criteria for resident participants and using different data collection methods. Residents were

only included in the UK study if they could provide their own informed consent and were

excluded if they had a diagnosis of depression or anxiety. The relationship between depression

and activity and the high proportion of residents with depression identified in the AusQoL

study suggests that this is an important group of residents to include in studies concerned with

activity. In the current study, obtaining proxy consent allowed residents to participate even if

they were unable to provide their own informed consent, giving them the opportunity to

contribute to research and share the experiences and perspectives of residents with more severe

dementia. In the UK study, focus groups were used to collect data from all participant groups.

While there is debate about the suitability of focus groups for research participants with

dementia (Cridland, Phillipson, Brennan-Horley, & Swaffer, 2016), this was likely to be more


difficult in the current study with residents with more severe cognitive impairment. Therefore,

individual interviews with residents allowed for those with more severe cognitive impairment

to also participate. The authors also recommended that future research consider, in more detail,

methods that can be used to enable residents with dementia to participate in ‘meaningful

activity’. The current study was able to address this. In many RACFs, volunteers also have an

important role in relation to activities (Mavromaras et al., 2017). Including the perspectives of

volunteers would have added useful insights on the issue. Future research should consider this

group.

There were some limitations of the qualitative phase of this study in relation to the

diversity of participants that limit the generalisability of findings. Initially, the aim was to

recruit RACFs from outer regional, inner regional and major city geographic areas. All four

RACFs that were recruited were from inner regional areas. Despite the challenges of recruiting

RACFs diverse by remoteness, the participating RACFs were located in distinct areas: 1) a city

in northern Tasmania; 2) a city in southern Tasmania; 3) a town in southern Tasmania; and 4)

a coastal town in Victoria. There was diversity in RACFs in relation to size and organisational

type.

There were also limitations in the diversity in resident participants, for example, in

relation to gender. Most participating residents were female with less than 16% being male.

This may have some implications for the findings as different challenges in relation to activities

for men were identified by some of the participants. For example, participants reported that

typical male gendered activities such as woodworking or mechanical work are difficult or even

not possible in the RACF context while typical female gendered activities such as knitting and

craft are possible and common. However, this gender imbalance in participants is not surprising

given that there are more female than male residents in Australian RACFs with female residents

accounting for 70% of all permanent RACF residents (Australian Institute of Health and

Welfare, 2012b).

This study also excluded some groups of RACF residents. Residents with a severity of

dementia or a speech or hearing impairment that prevented their participation in an interview

were excluded. Excluding residents with impairments that contribute to communication

difficulties is a limitation given the social nature of ‘meaningful activities’ identified in this

study. Future research needs to consider appropriate data collection methods that would allow

for residents with these impairments to participate.


8.3 FUTURE RESEARCH

There are several directions for future research. While the analysis of the AusQoL study

data provided a comprehensive understanding of the characteristics associated with resident

activity opportunities and participation, there are areas where a more detailed understanding

would be valuable and unexpected or counterintuitive findings that could be further explored.

A more fine-grained knowledge could be developed by considering different types of activities

such as outdoor activities, intellectual activities and social activities in addition to overall

participation in activities. Prior to the AusQoL study, there has been limited research

differentiating the types of aggressive and agitated behaviour in relation to activities. The

current analysis provided valuable insights into relationships between these and resident

activity, but further exploration is needed. There are some commonly held assumptions that

were not supported by the findings of this study, for example, that a person-centred approach

to care and resident involvement in developing personalised activity plans will increase

participation. Although some possible explanations for findings in relation to these

characteristics were discussed in the previous chapter, the field would benefit from further

research in these areas.

Limited RACF staffing is often raised as a barrier to activity participation, including

participation in ‘meaningful activities’. However, this view was not supported by the analysis

of the AusQoL study data, suggesting that the training and experience of RACF staff is more

important than considering only the numbers of staff or staff to resident ratios. A better

understanding of the training and experience of RACF staff and their knowledge and capacity

to provide activities would be valuable and help to identify areas to focus future training.

Specific areas requiring further research include the experience and capacity to support activity

participation among staff working in dementia-specific areas and staff working in different

roles including activity provision and care-related roles. Future research could also evaluate

the effectiveness of the range of strategies used by RACF staff to support residents with

dementia, including those living in dementia-specific areas, to participate in activities.

Further research is needed to explore resident activity opportunities and participation in

dementia-specific areas compared to integrated areas within RACFs. Little is known about the

approaches to activity opportunities and programming as well as the activities offered in

dementia-specific areas. Activity opportunities may be part of a structured program or use a

more flexible approach, part of the broader RACF activity opportunities or limited to the

dementia-specific unit. The perspectives of residents living in dementia-specific units, their


family members and RACF staff about current and potential approaches to activity provision

and support in these areas would also be valuable.

Observational research is needed to build on the understanding of activity participation

and ‘meaningful activity’ for people living with dementia in RACFs developed in this study.

Observing residents with dementia while they are participating in activities would provide

opportunities to consider whether the activity is meaningful for the individual. The empirical

referents of ‘meaningful activity’ identified in this study could provide guidance for how the

concept could be recognised and quantified in observational studies of activity (Walker &

Avant, 2011). Passive and active activity participation could also be explored using

observational studies. While participants in the qualitative study perceived value in passive

engagement in activity, previous research and measurement tools do not clearly differentiate it

from more active participation. This makes the impact of passive participation unclear.

Observations would provide a more detailed understanding of this aspect of activity

participation among RACF residents with dementia. Observations can also provide important

insights into social interactions and the social context (Mulhall, 2003). The qualitative phase

of this study indicated the importance of the social aspect of activities but the extent to which

residents with dementia engage in social interaction through activity participation is difficult

to ascertain from these findings or the quantitative data collected using the AAIQOL.

Observations would be valuable to further explore this.

Observations would complement the interview-based findings by placing these accounts

within the context of the wider care setting and providing another perspective on everyday

experiences (Hubbard, Downs, et al., 2003; Phinney et al., 2007). The most appropriate types

of observations would be naturalistic observations with minimal interference or interaction

from the researchers, and the observation of usual care and activities (Holthe et al., 2007;

Hubbard, Tester, & Downs, 2003; Mulhall, 2003). A study looking at activity structure and

programming in five US RACFs found that most organised activities finish by 4:00pm and at

that time many residents display either passive or agitated behaviours (Buettner &

Fitzsimmons, 2003). The scheduling of organised activities is likely to be similar in Australian

RACFs. To be comprehensive, observational studies of activity should include both times when

residents are likely to have opportunities to participate in activities organised by the RACF

staff as well as times in the late afternoon when this is less likely.

While this study has identified the key defining attributes of ‘meaningful activity’ in

relation to RACF residents with dementia, further research is needed to clarify how these


attributes can be measured in practice. There are some existing self report tools to assess

‘meaningful activity’ among older adults, but they are not specific to those living with dementia

in RACFs. The Meaningful Activity Participation Assessment (MAPA) seeks a rating of the

meaningfulness of each of 28 listed activities from ‘not at all’ to ‘extremely’ (Eakman et al.,

2010b). Respondents are given guidance to assess the meaningfulness of activities as “how

much it matters or is personally fulfilling for you” (Eakman et al., 2010b; p3). Using the

Engagement in Meaningful Activities Survey (EMAS) overall engagement in ‘meaningful

activity’ is assessed, not an assessment of the meaning of specific activities (Eakman et al.,

2010a). The defining attributes of ‘meaningful activity’ identified in this study provide a

foundation for developing a tool specific to the RACF context and in relation to residents with

dementia to assess whether specific activities are meaningful. Any tool developed would need

to address each of the defining attributes. The tool would need to measure enjoyment of the

activity, engagement, the suitability of the activity to the individual resident, links between the

activity and the resident’s identity and personal goals and the social aspect of the activity.

The qualitative study provided a preliminary understanding of how family members and

RACF staff currently assess ‘meaningful activity’ in practice including observing resident

responses of enjoyment, body language and facial expression. These assessments relate

primarily to enjoyment of the activity and engagement of the resident. It is unclear how family

members and RACF staff assess whether a certain activity is related to a resident’s goals and

identity, suited to their abilities and interests and has a social aspect that is suited to the

individual resident. More research is needed to further explore how each of the defining

attributes of ‘meaningful activity’ can be measured. The findings of the qualitative study also

highlight the role that family members and RACF staff play in identifying potentially

‘meaningful activities’ and supporting residents with dementia to participate. Therefore, a tool

that can be completed by family members and RACF staff is needed in addition to a self report

tool. These tools could be used for research purposes but also to support those involved in

caring for RACF residents with dementia to assess current activity opportunities and

participation and identify areas that may need to be addressed.

Intervention studies could provide evidence for the positive consequences of ‘meaningful

activity’ suggested by participants in this qualitative study. The analysis of the AusQoL study

data identified a range of resident characteristics associated with activity opportunities and

participation but was based on a cross-sectional study so the direction of causality is unknown.

Many of the other studies in the area have also been cross-sectional. Intervention studies would


provide valuable insight into the nature of the relationships between resident activity and RACF

and resident characteristics. There is a particular need for studies to inform the use of activities

and ‘meaningful activities’ as a non-pharmacological intervention for residents with depression

and dementia related behaviour changes. Activity participation has been recommended as an

intervention to address these but there is no clear framework to guide implementation. It is

unclear whether activities need to be adapted to the specific interests and needs of individuals

or whether non-tailored activity participation is adequate to manage dementia related behaviour

changes (Mohler et al., 2018; Trahan, Kuo, Carlson, & Gitlin, 2014). Other questions that need

to be explored include whether there is a difference between meaningful and non-meaningful

activities and the impact of regular and ongoing activity participation compared with activity

participation facilitated in response to specific behaviours as they arise.

8.4 CONCLUSION

This study has addressed important gaps in the literature. First, it has provided valuable

insight into QoL as indicated by activity participation and signs of affect among Australian

RACF residents with dementia. While previous studies explored RACF-level activity

participation or selected characteristics associated with activity, the current nationally

representative study investigated actual activity opportunities and participation of individual

residents. Including a broad range of resident and RACF-level characteristics allowed for

independent associations with activity participation to be identified. The literature-based

concept analysis was the first comprehensive analysis of what ‘meaningful activity’ means in

the context of the lives of people living with dementia. These findings were built on in the

RACF context to provide a clearer understanding of this widely used term and help to develop

research and discussion on the topic. While several areas for further research have been

identified, the study has some important implications for the care of those living with dementia

in RACFs. The findings provide guidance for those caring for RACF residents living with

dementia to understand groups of residents who may have fewer activity opportunities or less

frequent activity participation. A better understanding of what makes activities meaningful in

this context can also provide direction on how to identify activities that may be meaningful.

The knowledge gained from this study is an important step towards increasing participation in

activities, including ‘meaningful activities’, among RACF residents with dementia, and this

has the potential to improve their daily lives.

269

Reference List

Abbott, K. M., Sefcik, J. S., & Van Haitsma, K. (2017). Measuring social integration among residents in a dementia special care unit versus traditional nursing home: A pilot study. Dementia (London), 16(3), 388-403. doi:10.1177/1471301215594950

Achterberg, W., Pot, A. M., Kerkstra, A., Ooms, M., Muller, M., & Ribbe, M. W. (2003). The effect of depression on social engagement in newly admitted Dutch nursing home residents. The Gerontologist, 43(2), 213-218. doi:10.1093/geront/43.2.213

Adams, M. (2003). Humanistic values. International Journal for Philosophy of Religion, 54(2), 65-76.

Aged Care Financing Authority. (2019). Seventh report on the funding and financing of the aged care industry. Retrieved from https://agedcare.health.gov.au/sites/default/files/documents/08_2019/acfa-seventh-report-2019-acc.pdf

Aged Care Quality and Safety Commission. (2018). Guidance and resources for providers to support the Aged Care Quality Standards. Retrieved from https://www.agedcarequality.gov.au/providers/standards

Albert, S., Del Castillo-Castaneda, C., Sano, M., & Jacobs, D. (1996). Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of the American Geriatrics Society, 44(11), 1342-1347. doi:10.1111/j.1532-5415.1996.tb01405.x

Albert, S. M., Jacobs, D. M., Sano, M., Marder, K., Bell, K., Devanand, D., . . . Stern, Y. (2001). Longitudinal study of quality of life in people with advanced Alzheimer's disease. American Journal of Geriatric Psychiatry, 9(2), 160-169.

Algase, D. L., Antonakos, C., Beattie, E., Son Hong, G., & Beel-Bates, C. (2008). Are wandering and physically nonaggressive agitation equivalent? The American Journal of Geriatric Psychiatry, 16(4), 293-299. doi:10.1097/JGP.0b013e3181629943

Algase, D. L., Beattie, E. R. A., Song, J., Milke, D., Duffield, C., & Cowan, B. (2004). Validation of the Algase Wandering Scale (version 2) in a cross cultural sample. Aging and Mental Health, 8(2), 133-142. doi:10.1080/13607860410001649644

Algase, D. L., Beck, C., Kolanowski, A., Whall, A., Berent, S., Richards, K., & Beattie, E. (1996). Need-driven dementia-compromised behaviour: An alternative view of disruptive behavior. American Journal of Alzheimer's Disease, November/December, 10-19.

Algase, D. L., Moore, D. H., Vandeweerd, C., & Gavin-Dreschnack, D. J. (2007). Mapping the maze of terms and definitions in dementia-related wandering. Aging and Mental Health, 11(6), 686-698. doi:10.1080/13607860701366434

Alzheimer's Association. (2017). 2017 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 13(4), 325-373. doi:10.1016/j.jalz.2017.02.001

Alzheimer's Association. (2019). Stages of Alzheimer's. Retrieved from http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

Alzheimer's Disease International. (2015). World Alzheimer report 2015: The global impact of dementia, an analysis of prevalence, incidence, cost and trends. Retrieved from London: https://www.alz.co.uk/research/world-report-2015

American Geriatrics Society, & American Association for Geriatric Psychiatry. (2003). Consensus statement on improving the quality of mental health care in US nursing homes: Management of depression and behavioral symptoms associated with dementia. Journal of American Geriatrics Society, 51(9), 1287-1298. doi:10.1046/j.1532-5415.2003.51415.x

270

American Psychiatric Association. (2013). Diagnostic and statistical manural of mental disorders: 5th edition. Retrieved from http://www.dsm5.org/Pages/Default.aspx

Anas, M., & Akhouri, D. (2013). Positive and negative affect in depressed and normal adults. Journal of Indian Health Psychology, 8(1), 61-68.

Andrew, N., & Meeks, S. (2018). Fulfilled preferences, perceived control, life satisfaction, and loneliness in elderly long-term care residents. Aging and Mental Health, 22(2), 183-189. doi:10.1080/13607863.2016.1244804

Annear, M. J., Elliott, K. J., Tierney, L. T., Lea, E. J., & Robinson, A. (2017). "Bringing the outside world in": Enriching social connection through health student placements in a teaching aged care facility. Health Expectations, 20(5), 1154-1162. doi:10.1111/hex.12561

Annear, M. J., Toye, C., McInerney, F., Eccleston, C., Tranter, B., Elliott, K. E., & Robinson, A. (2015). What should we know about dementia in the 21st century? A Delphi consensus study. BMC Geriatrics, 15(5). doi:10.1186/s12877-015-0008-1

Armat, M. R., Assarroudi, A., Rad, M., Sharifi, H., & Heydari, A. (2018). Inductive and deductive: Ambiguous labels in qualitative content analysis. The Qualitative Report, 23(1), 219-221.

Assarroudi, A., Heshmati Nabavi, F., Armat, M. R., Ebadi, A., & Vaismoradi, M. (2018). Directed qualitative content analysis: The description and elaboration of its underpinning methods and data analysis process. Journal of Research in Nursing, 23(1), 42-55. doi:10.1177/1744987117741667

Ausserhofer, D., Deschodt, M., De Geest, S., van Achterberg, T., Meyer, G., Verbeek, H., . . . Engberg, S. (2016). "There's no place like home": A scoping review on the impact of homelike residential care models on resident-, family-, and staff-related outcomes. Journal of the American Medical Directors Association, 17(8), 685-693. doi:10.1016/j.jamda.2016.03.009

Australian College of Nursing. (2019). Regulation of the unregulated health care workforce across the health care system: A white paper by ACN 2019. Retrieved from Canberra: https://www.acn.edu.au/wp-content/uploads/white-paper-regulation-unregulated-health-care-workforce-across-health-care-system.pdf

Australian Institute of Health and Welfare. (2012a). Dementia in Australia. Cat. no. AGE 70. Retrieved from Canberra: https://www.aihw.gov.au/reports/dementia/dementia-in-australia/contents/table-of-contents

Australian Institute of Health and Welfare. (2012b). Residential aged care in Australia 2010-11: A statistical overview. Retrieved from http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=10737422896

Australian Institute of Health and Welfare. (2018a). Australia's health 2018. Retrieved from Canberra: https://www.aihw.gov.au/reports/australias-health/australias-health-2018/contents/table-of-contents

Australian Institute of Health and Welfare. (2018b). Leading causes of death. Retrieved from http://www.aihw.gov.au/deaths/leading-causes-of-death/

Australian Institute of Health and Welfare. (2018c). People's care needs in aged care. Retrieved from https://www.gen-agedcaredata.gov.au/Topics/Care-needs-in-aged-care

Australian Institute of Health and Welfare. (2018d). Services and places in aged care. Retrieved from https://www.gen-agedcaredata.gov.au/Topics/Services-and-places-in-aged-care

Backhouse, T., Killett, A., Penhale, B., & Gray, R. (2016). The use of non-pharmacological interventions for dementia behaviours in care homes: Findings from four in-depth, ethnographic case studies. Age and Ageing, 45(6), 856-863. doi:10.1093/ageing/afw136

271

Bailey, E. M., Stevens, A. B., LaRocca, M. A., & Scogin, F. (2017). A randomized controlled trial of a therapeutic intervention for nursing home residents with dementia and depressive symptoms. Journal of Applied Gerontology, 36(7), 895-908. doi:10.1177/0733464815627956

Ball, M., & Orford, J. (2002). Meaningful patterns of activity amongst the long-term inner city unemployed: A qualitative study. Journal of Community & Applied Social Psychology, 12(6), 377-396. doi:10.1002/casp.692

Barba, B. E., Tesh, A. S., & Courts, N. F. (2002). Promoting thriving in nursing homes: The eden alternative. Journal of Gerontological Nursing, 28(3), 7-13. doi:10.3928/0098-9134-20020301-04

Beach, M. C., Inui, T., & Relationship-Centered Care Research Network. (2006). Relationship-centered care. A constructive reframing. Journal of General Internal Medicine, 21(Suppl 1), S3-8. doi:10.1111/j.1525-1497.2006.00302.x

Beattie, E., Fielding, E., Moyle, W., He, W., & AusQoL Group. (2016). Measuring the quality of life of people with dementia: Differences among three raters. Paper presented at the Gerontological Society of American Annual Scientific Meeting, New Orleans.

Beattie, E., O'Reilly, M., Fetherstonhaugh, D., McMaster, M., Moyle, W., & Fielding, E. (2018). Supporting autonomy of nursing home residents with dementia in the informed consent process. Dementia (London), 18(7-8), 2821-2835. doi:10.1177/1471301218761240

Beattie, E., O'Reilly, M., Moyle, W., Chenoweth, L., Fetherstonhaugh, D., Horner, B., . . . Fielding, E. (2015). Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study. International Psychogeriatrics, 27(10), 1739-1747. doi:10.1017/S1041610215000435

Bebbington, A., Darton, R., & Netten, A. (2001). Care homes for older people: Admissions, needs and outcomes. Retrieved from University of Kent at Cantebury: https://www.pssru.ac.uk/pub/chop2.pdf

Beck, C., Richards, K., Lambert, C., Doan, R., Landes, R. D., Whall, A., . . . Feldman, Z. (2011). Factors associated with problematic vocalizations in nursing home residents with dementia. Gerontologist, 51(3), 389-405. doi:10.1093/geront/gnq129

Beer, C., Flicker, L., Horner, B., Bretland, N., Scherer, S., Lautenschlager, N. T., . . . Almeida, O. P. (2010). Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: A cross sectional study. PLoS One, 5(12), e15621. doi:10.1371/journal.pone.0015621

Beerens, H. C., Zwakhalen, S. M. G., Verbeek, H., Tan, F. E. S., Jolani, S., Downs, M., . . . Hamers, J. P. H. (2018). The relation between mood, activity, and interaction in long-term dementia care. Aging and Mental Health, 22(1), 26-32. doi:10.1080/13607863.2016.1227766

Bergman-Evans, B. (2004). Beyond the basics: Effects of the Eden Alternative model on quality of life issues. Journal of Gerontological Nursing, 30(6), 27-34. doi:10.3928/0098-9134-20040601-07

Bishop, R., & Purcell, E. (2013). The value of an allotment group for refugees. British Journal of Occupational Therapy, 76(6), 264-269. doi:10.4276/030802213x13706169932824

Boggatz, T. (2015). Quality of life in old age: A concept analysis. International Journal of Older People Nursing, 11(1), 55-69. doi:10.1111/opn.12089

Bousso, R. S., Poles, K., & de Almeida Lopes Monteiro da Cruz, D. (2014). Nursing concepts and theories. Revista da Escola de Enfermagem da USP, 48(1), 141-145. doi:10.1590/s0080-623420140000100018

272

Boyd, A., Payne, J., Hutcheson, C., & Bell, S. (2012). Bored to death: Tackling lack of activity in care homes. British Journal of Mental Health Nursing, 1(4), 232-237. doi:10.12968/nrec.2014.16.2.98

Brenske, S., Rudrud, E., Schulze, K., & Rapp, J. (2008). Increasing activity attendance and engagement in individuals with dementia using descriptive prompts. Journal of Applied Behavior Analysis, 41(2), 273-277. doi:10.1901/jaba.2008.41-273

Brodaty, H., Draper, B., & Low, L. F. (2003). Behavioural and psychological symptoms of dementia: A seven-tiered model of service delivery. Medical Journal of Australia, 178(5), 231-234. doi:10.5694/j.1326-5377.2003.tb05169.x

Brodaty, H., Draper, B., Saab, D., Low, L. F., Richards, V., Paton, H., & Lie, D. (2001). Psychosis, depression and behavioural disturbances in Sydney nursing home residents: Prevalence and predictors. International Journal of Geriatric Psychiatry, 16(5), 504-512. doi:10.1002/gps.382

Brodaty, H., Low, L. F., Gibson, L., & Burns, K. (2006). What is the best dementia screening instrument for general practitioners to use? American Journal of Geriatric Psychiatry, 14(5), 391-400. doi:10.1097/01.JGP.0000216181.20416.b2

Brooker, D. (2004). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13(3), 215-222. doi:10.1017/s095925980400108x

Brooker, D. J., Argyle, E., Scally, A. J., & Clancy, D. (2011). The enriched opportunities programme for people with dementia: A cluster-randomised controlled trial in 10 extra care housing schemes. Aging and Mental Health, 15(8), 1008-1017. doi:10.1080/13607863.2011.583628

Brooker, D. J., & Woolley, R. J. (2007). Enriching opportunities for people living with dementia: The development of a blueprint for a sustainable activity-based model. Aging and Mental Health, 11(4), 371-383. doi:10.1080/13607860600963687

Brownie, S., & Nancarrow, S. (2013). Effects of person-centered care on residents and staff in aged-care facilities: A systematic review. Journal of Clinical Interventions in Aging, 8, 1-10. doi:10.2147/CIA.S38589

Bryant, L., Corbett, K., & Kutner, J. (2001). In their own words: A model of healthy aging. Social Science & Medicine, 53(7), 927-941. doi:10.1016/s0277-9536(00)00392-0

Buettner, L., & Fitzsimmons, S. (2003). Activity calendars for older adults with dementia: What you see is not what you get. American Journal of Alzheimer's Disease and Other Dementias, 18(4), 215-226. doi:10.1177/153331750301800405

Buettner, L., & Kolanowski, A. (2003). Practice guidelines for recreation therapy in the care of people with dementia. Geriatric Nursing, 24(1), 18-25. doi:10.1067/mgn.2003.19

Burke, C., Stein-Parbury, J., Luscombe, G., & Chenoweth, L. (2016). Development and testing of the Person-Centered Environment and Care Assessment Tool (PCECAT). Clinical Gerontologist, 39(4), 282-306. doi:10.1080/07317115.2016.1172532

Burla, L., Knierim, B., Barth, J., Liewald, K., Duetz, M., & Abel, T. (2008). From text to codings: Intercoder reliability assessment in qualitative content analysis. Nursing Research, 57(2), 113-117. doi:10.1097/01.NNR.0000313482.33917.7d

Cahill, S., Pierce, M., Werner, P., Darley, A., & Bobersky, A. (2015). A systematic review of the public's knowledge and understanding of Alzheimer's disease and dementia. Alzheimer's Disease and Associated Disorders, 29(3), 255-275. doi:10.1097/WAD.0000000000000102

Carless, D. (2008). Narrative, identity, and recovery from serious mental illness: A life history of a runner. Qualitative Research in Psychology, 5(4), 233-248. doi:10.1080/14780880701826101

273

Carless, D., & Douglas, K. (2008). The role of sport and exercise in recovery from serious mental illness: Two case studies. International Journal of Men's Health, 7(2), 137-156. doi:10.3149/jmh.0702.137

Casey, A. N., Low, L. F., Jeon, Y. H., & Brodaty, H. (2016). Residents perceptions of friendship and positive social networks within a nursing home. Gerontologist, 56(5), 855-867. doi:10.1093/geront/gnv146

Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and psychological symptoms of dementia. Frontiers in Neurology, 3, 73. doi:10.3389/fneur.2012.00073

Chang, Y.-P., Edwards, D. F., & Lach, H. W. (2011). The Collateral Source version of the Geriatric Depression Scale: Evaluation of psychometric properties and discrepancy between collateral sources and patients with dementia in reporting depression. International Psychogeriatrics, 23(6), 961-968. doi:10.1017/S1041610211000147

Chenoweth, L., King, M. T., Jeon, Y.-H., Brodaty, H., Stein-Parbury, J., Norman, R., . . . Luscombe, G. (2009). Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: A cluster-randomised trial. Lancet Neurology, 8(4), 317-325. doi:10.1016/S1474-4422(09)70045-6

Chenoweth, L., Stein-Parbury, J., Lapkin, S., Wang, A., Liu, Z., & Williams, A. (2019). Effects of person-centered care at the organisational-level for people with dementia. A systematic review. PLoS One, 14(2), e0212686. doi:10.1371/journal.pone.0212686

Chung, J. C. (2004). Activity participation and well-being of people with dementia in long-term-care settings. Occupation, Participation and Health, 24(1), 22-31. doi:10.1177/153944920402400104

Chung, P. Y. F., Ellis-Hill, C., & Coleman, P. G. (2008). Carers perspectives on the activity patterns of people with dementia. Dementia (London), 7(3), 359-381. doi:10.1177/1471301208093289

Ciro, C., & Smith, P. (2015). Improving personal characterization of meaningful activity in adults with chronic conditions living in a low-income housing community. International Journal of Environmental Research and Public Health,, 12(9), 11379-11395. doi:10.3390/ijerph120911379

Clarke, C., Stack, C., & Martin, M. (2017). Lack of meaningful activity on acute physical hospital wards: Older people’s experiences. British Journal of Occupational Therapy, 81(1), 15-23. doi:10.1177/0308022617735047

Clarke, N., Smith, R., Wood, J., Koskela, S., Jones, F., & Hurley, M. (2019). A qualitative interview study comparing and contrasting resident and staff perspectives of engaging in meaningful activity in a UK care home. Archives of Gerontology and Geriatrics,, 83, 257-262. doi:10.1016/j.archger.2019.05.005

Cohen-Mansfield, J. (1986). Agitated behaviors in the elderly. II. Preliminary results in the cognitively deteriorated Journal of American Geriatrics Society, 34(10), 722-727. doi:10.1111/j.1532-5415.1986.tb04303.x

Cohen-Mansfield, J., Dakheel-Ali, M., & Marx, M. S. (2009). Engagement in persons with dementia: The concept and its measurement. The American Journal of Geriatric Psychiatry, 17(4), 299-307. doi:10.1097/JGP.0b013e31818f3a52

Cohen-Mansfield, J., Gavendo, R., & Blackburn, E. (2017). Activity preferences of persons with dementia: An examination of reports by formal and informal caregivers. Dementia (London), 18(6), 2036-2048. doi:10.1177/1471301217740716

Cohen-Mansfield, J., Hai, T., & Comishen, M. (2017). Group engagement in persons with dementia: The concept and its measurement. Psychiatry Research,, 251, 237-243. doi:10.1016/j.psychres.2017.02.013

274

Cohen-Mansfield, J., & Jensen, B. (2018). Attendance in recreational groups for persons with dementia: The impact of stimulus and environmental factors. American Journal of Alzheimer's Disease and Other Dementias, 33(7), 471-478. doi:10.1177/1533317518788158

Cohen-Mansfield, J., Marx, M. S., Regier, N. G., & Dakheel-Ali, M. (2009). The impact of personal characteristics on engagement in nursing home residents with dementia. International Journal of Geriatric Psychiatry, 24(7), 755-763. doi:10.1002/gps.2192

Cohen-Mansfield, J., Marx, M. S., Thein, K., & Dakheel-Ali, M. (2010). The impact of past and present preferences on stimulus engagement in nursing home residents with dementia. Aging and Mental Health, 14(1), 67-73. doi:10.1080/13607860902845574

Cohen-Mansfield, J., Thein, K., Dakheel-Ali, M., & Marx, M. S. (2010). Engaging nursing home residents with dementia in activities: The effects of modeling, presentation order, time of day, and setting characteristics. Aging and Mental Health, 14(4), 471-480. doi:10.1080/13607860903586102

Committee on Aging Frontiers in Social Psychology Personality and Adult Developmental Psychology. (2006). When I'm 64 (L. L. Carstensen & C. R. Hartel Eds.). Washington, D.C.: The National Academies Press.

Conti, A., Voelkl, J., & McGuire, F. (2008). Efficacy of meaningful activities in recreation therapy on passive behaviors of older adults with dementia. Annual in Therapeutic Recreation, 16, 91-104.

Cooney, A., Murphy, K., & O'Shea, E. (2009). Resident perspectives of the determinants of quality of life in residential care in Ireland. Journal of Advanced Nursing, 65(5), 1029-1038. doi:10.1111/j.1365-2648.2008.04960.x

Corrigan, P. W. (2015). Person-centred care for mental illness: The evolution of adherence and self-determination. Washington: American Psychological Association.

Cridland, E. K., Phillipson, L., Brennan-Horley, C., & Swaffer, K. (2016). Reflections and recommendations for conducting in-depth interviews with people with dementia. Qualitative Health Research, 26(13), 1774-1786. doi:10.1177/1049732316637065

Csikszentmihalyi, M. (1993). Activity and happiness: Towards a science of occupation. Journal of Occupational Science, 1(1), 38-42. doi:10.1080/14427591.1993.9686377

Cummins, R. A. (1997). Assessing quality of life for people with disabilities. In R. Brown (Ed.), Quality of life for people with disabilities: Models, research and practice (2nd ed., pp. 116-150). Cheltenham: Stanley Thornes.

Danhauer, S. C., Legault, C., Bandos, H., Kidwell, K., Costantino, J., Vaughan, L., . . . Shumaker, S. (2013). Positive and negative affect, depression, and cognitive processes in the Cognition in the Study of Tamoxifen and Raloxifene (Co-STAR) Trial. Neuropsychology Development and Cognition. Section B, Aging Neuropsychology and Cognition, 20(5), 532-552. doi:10.1080/13825585.2012.747671

De Bellis, A. (2010). Australian residential aged care and the quality of nursing care provision. Contemporary Nurse, 35(1), 100-113. doi:10.5172/conu.2010.35.1.100

de Boer, B., Beerens, H. C., Katterbach, M. A., Viduka, M., Willemse, B. M., & Verbeek, H. (2018). The physical environment of nursing homes for people with dementia: Traditional nursing homes, small-scale living facilities, and Green Care Farms. Healthcare (Basel), 6(4). doi:10.3390/healthcare6040137

de Boer, B., Hamers, J. P., Beerens, H. C., Zwakhalen, S. M., Tan, F. E., & Verbeek, H. (2015). Living at the farm, innovative nursing home care for people with dementia: Study protocol of an observational longitudinal study. BMC Geriatrics, 15, 144. doi:10.1186/s12877-015-0141-x

de Boer, B., Hamers, J. P., Zwakhalen, S. M., Tan, F. E., Beerens, H. C., & Verbeek, H. (2017). Green Care Farms as innovative nursing homes, promoting activities and social

275

interaction for people with dementia. Journal of the American Medical Directors Association, 18(1), 40-46. doi:10.1016/j.jamda.2016.10.013

de Boer, B., Hamers, J. P. H., Zwakhalen, S. M. G., Tan, F. E. S., & Verbeek, H. (2017). Quality of care and quality of life of people with dementia living at green care farms: A cross-sectional study. BMC Geriatrics, 17(1), 155. doi:10.1186/s12877-017-0550-0

Dean, S. G., Siegert, R. J., & Taylor, W. J. (2012). Interprofessional rehabilitation: A person-centred approach. Oxford: Wiley-Blackwell.

Deloitte Access Economics. (2011). Dementia across Australia: 2011-2050. Retrieved from https://fightdementia.org.au/sites/default/files/20111014_Nat_Access_DemAcrossAust.pdf

Dementia Australia. (2019a). Progression of dementia. Retrieved from https://www.dementia.org.au/about-dementia/what-is-dementia/progression-of-dementia

Dementia Australia. (2019b). Purposeful activities for people with dementia: A resource. Retrieved from https://www.dementia.org.au/resources/purposeful-activities-for-people-with-dementia

Dening, K. H. (2016). Palliative and end of life care for people with dementia. Nursing Standard, 30(23), 42-49. doi:10.7748/ns.30.23.42.s46

Department of Health. (2015). 2014-15 Report on the Operation of the Aged Care Act 1997. Retrieved from Canberra, ACT: https://www.dss.gov.au/roaca

Department of Health. (2018). 2017-2018 Report on the operation of the Aged Care Act 1997. Retrieved from Canberra: https://www.gen-agedcaredata.gov.au/Resources/Reports-and-publications/2018/November/2017%E2%80%9318-Report-on-the-Operation-of-the-Aged-Care-A

Department of Health and Ageing. (2009). Aged Care Funding Instrument (ACFI): User guide. Retrieved from Canberra: https://agedcare.health.gov.au/funding/aged-care-subsidies-and-supplements/residential-care-subsidy/basic-subsidy-amount-aged-care-funding-instrument/aged-care-funding-instrument-acfi-user-guide

DeSantis, B. (2015). The 'Butterfly' approach as it applies to culture change and person-centred care. Canadian Nursing Home, 26(1), 26-28.

Dewing, J. (2007). Participatory research: A method of process consent with persons who have dementia. Dementia (London), 6(1), 11-25. doi:10.1177/1471301207075625

Diggs, J. (2008). Activity theory of aging. In S. J. D. Loue & M. Sajatovic (Eds.), Encyclopedia of Aging and Public Health (pp. 79-81). Boston, MA: Springer.

Dobbs, D., Munn, J., Zimmerman, S., Boustani, M., Williams, C. S., Sloane, P. D., & Reed, P. S. (2005). Characteristics associated with lower activity involvement in long-term care residents with dementia. The Gerontologist, 45(Special Issue 1), 81-86. doi:10.1093/geront/45.suppl_1.81

Dowling, M. (2006). Approaches to reflexivity in qualitative research. Nurse Researcher, 13(3), 7-21. doi:10.7748/nr2006.04.13.3.7.c5975

Drageset, J., Haugan, G., & Tranvag, O. (2017). Crucial aspects promoting meaning and purpose in life: Perceptions of nursing home residents. BMC Geriatrics, 17(1), 254. doi:10.1186/s12877-017-0650-x

Drageset, J., Natvig, G. K., Eide, G. E., Bondevik, M., Nortvedt, M. W., & Nygaard, H. A. (2009). Health-related quality of life among old residents of nursing homes in Norway. International Journal of Nursing Practice, 15(5), 455-466. doi:10.1111/j.1440-172X.2009.01794.x

Du Toit, S. H., Shen, X., & McGrath, M. (2018). Meaningful engagement and person-centered residential dementia care: A critical interpretive synthesis. Scandanavian Journal of Occupational Therapy, 26(5), 343-355. doi:10.1080/11038128.2018.1441323

276

Eakman, A. (2011). Convergent validity of the Engagement in Meaningful Activities Survey in a college sample. OTJR: Occupation Participation and Health, 31(1), 23-32. doi:10.3928/15394492-20100122-02

Eakman, A. (2012). Measurement characteristics of the Engagement in Meaningful Activities Survey in an age-diverse sample. The American Journal of Occupational Therapy, 66(2), e20-e29. doi:10.5014/ajot.2012.001867

Eakman, A. (2013). Relationships between meaningful activity, basic psychological needs, and meaning in life: Test of the meaningful activity and life meaning model. OTJR: Occupation, Participation and Health, 33(2), 100-109. doi:10.3928/15394492-20130222-02

Eakman, A., Carlson, M., & Clark, F. (2010a). Factor structure, reliability and convergent validity of the Engagement in Meaningful Activities Survey for older adults. OTJR: Occupation Participation and Health, 30(3), 111-121. doi:10.3928/15394492-20090518-01

Eakman, A., Carlson, M., & Clark, F. (2010b). The Meaningful Activity Participation Assessment: A measure of engagement in personally valued activities. The International Journal of Aging and Human Development, 70(4), 299-317. doi:10.2190/AG.70.4.b

Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2010). Promoting a continuation of self and normality: Person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 19(19), 2611-2618. doi:10.1111/j.1365-2702.2009.03143.x

Edvardsson, D., Petersson, L., Sjogren, K., Lindkvist, M., & Sandman, P. (2014). Everyday activities for people with dementia in residential aged care: Associations with person-centredness and quality of life. International Journal of Older People Nursing, 9(4), 269-276. doi:10.1111/opn.12030

Edvardsson, D., Varrailhon, P., & Edvardsson, K. (2014). Promoting person-centeredness in long-term care: An exploratory study. Journal of Gerontological Nursing, 40(4), 46-53. doi:10.3928/00989134-20131028-03

Edvardsson, D., Winblad, B., & Sandman, P. O. (2008). Person-centred care of people with severe Alzheimer's disease: Current status and ways forward. The Lancet Neurology, 7(4), 362-367. doi:10.1016/s1474-4422(08)70063-2

Ellis, J. M., Doyle, C. J., & Selvarajah, S. (2016). The relationship between apathy and participation in therapeutic activities in nursing home residents with dementia: Evidence for an association and directions for further research. Dementia (London), 15(4), 494-509. doi:10.1177/1471301214527300

Elo, S., & Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107-115. doi:10.1111/j.1365-2648.2007.04569.x

Erdal, A., Flo, E., Selbaek, G., Aarsland, D., Bergh, S., Slettebo, D. D., & Husebo, B. S. (2017). Associations between pain and depression in nursing home patients at different stages of dementia. Journal of Affective Disorders, 218, 8-14. doi:10.1016/j.jad.2017.04.038

Ezzy, D. (2013). Qualitative analysis: Practice and innovation. New York: Allen & Unwin Ltd.

Fielding, E., Beattie, E., O'Reilly, M., McMaster, M., & AusQoL Group. (2015). Achieving a national sample of nursing homes: Balancing probability techniques and practicalities. Research in Gerontological Nursing, 9(2), 58-65. doi:10.3928/19404921-20151019-03

Finkel, S. I., Lyons, J. S., & Anderson, R. L. (1992). Reliability and validity of the Cohen-Mansfield Agitation Inventory in institutionalized elderly. International Journal of Geriatric Psychiatry, 7, 487-490. doi:10.1002/gps.930070706

277

Fleming, R. (2011). An environmental audit tool suitable for use in homelike facilities for people with dementia. Australasian Journal on Ageing, 30(3), 108-112. doi:10.1111/j.1741-6612.2010.00444.x

Fleming, R., Goodenough, B., Low, L. F., Chenoweth, L., & Brodaty, H. (2016). The relationship between the quality of the built environment and the quality of life of people with dementia in residential care. Dementia (London), 15(4), 663-680. doi:10.1177/1471301214532460

Foley, K. L., Sudha, S., Sloane, P. D., & Gold, D. T. (2003). Staff perceptions of successful management of severe behavioral problems in dementia special care units. Dementia, 2(1), 105-124. doi:10.1177/1471301203002001998

Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). "Mini-mental state": A practical method for grading the cognitive status of patients for the clinician. Journal of Psychiatric Research, 12, 189-198. doi:10.1016/0022-3956(75)90026-6

Fraker, J., Kales, H. C., Blazek, M., Kavanagh, J., & Gitlin, L. N. (2014). The role of occupational therapist in the management of neuropsychiatric symptoms of dementia in clinical settings. Occupational Therapy in Health Care, 28(1), 4-20. doi:10.3109/07380577.2013.867468.

Gitlin, L. N., Marx, K. A., Alonzi, D., Kvedar , T., Moody, J., Trahan, M. A., & Van Haitsma, K. (2017). Feasibility of the Tailored Activity Program for Hospitalized (TAP-H) patients with behvioral symptoms. The Gerontologist, 57(3), 575-584. doi:10.1093/geront/gnw052

Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. P., & Hauck, W. W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. American Journal of Geriatric Psychiatry, 16(3), 229-239. doi:10.1097/JGP.0b013e318160da72

Gitlin, L. N., Winter, L., Vause Earland, T., Herge, E. A., Chernett, N. L., Piersol, C. V., & Burke, J. P. (2009). The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptibility and replication potential. The Gerontologist, 49(3), 428-439. doi:10.1093/geront/gnp087

Goldberg, B., Brintnell, E., & Goldberg, J. (2002). The relationship between engagement in meaningful activities and quality of life in persons disabled by mental illness. Occupational Therapy in Mental Health, 18(2), 17-44. doi:10.1300/J004v18n02_03

Gori, G., Pientini, S., & Vespa, A. (2001). The selection of meaningful activities as a treatment for day-care in dementia. Archives of Gerontology and Geriatrics,, Suppl 7, 207-212.

Guideline Adaptation Committee. (2016). Clinical practice guidelines and principles of care for people with dementia. Retrieved from https://www.clinicalguidelines.gov.au/

Gustafsdottir, M. (2015). Is watching television a realistic leisure option for people with dementia? Dementia and Geriatric Cognitive Disorders Extra, 5(1), 116-122. doi:10.1159/000369383

Haaksma, M. L., Leoutsakos, J. S., Bremer, J. A. E., Aalten, P., Ramakers, I., Verhey, F. R. J., . . . Melis, R. J. F. (2018). The clinical course and interrelations of dementia related symptoms. International Psychogeriatrics, 30(6), 859-866. doi:10.1017/S1041610217000321

Halvorsrud, L., & Kalfoss, M. (2007). The conceptualization and measurement of quality of life in older adults: A review of empirical studies published during 1994–2006. European Journal of Ageing, 4(4), 229-246. doi:10.1007/s10433-007-0063-3

Han, A., Radel, J., McDowd, J., & Sabata, D. (2016a). Perspectives of people with dementia about meaningful activities: A synthesis. American Journal of Alzheimers Disease and Other Dementias, 31(2), 115-123. doi:10.1177/1533317515598857

278

Han, A., Radel, J., McDowd, J. M., & Sabata, D. (2016b). The benefits of individualized leisure and social activity interventions for people with dementia: A systematic review. Activities, Adaptation & Aging, 40(3), 219-265. doi:10.1080/01924788.2016.1199516

Hansen, E., Walters, J., & Howes, F. (2016). Whole person care, patient-centred care and clinical practice guidelines in general practice. Health Sociology Review, 25(2), 157-170. doi:10.1080/14461242.2016.1170625

Harmer, B., & Orrell, M. (2008). What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging and Mental Health, 12(5), 548-558. doi:10.1080/13607860802343019

Harrison, S. L., Lang, C., Whitehead, C., Crotty, M., Ratcliffe, J., Wesselingh, S., & Inacio, M. C. (2019). Trends in prevalence of dementia for people accessing aged care services in Australia. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, Epub ahead of print. doi:10.1093/gerona/glz032

Hebblethwaite, S. (2013). "I think that it could work but...": Tensions between the theory and practice of person-centred and relationship-centred care. Therapeutic Recration Journal, 47(1), 13-34.

Hermansson, E., & Martensson, L. (2011). Empowerment in the midwifery context: A concept analysis. Midwifery, 27(6), 811-816. doi:10.1016/j.midw.2010.08.005

Heung, R. S. M., & Yuen Loke, A. J. T. (2012). Leisure and older people: A concept analysis, and implications for nursing. Aging and Society: An Interdisciplinary Journal, 1(2), 55-67.

Hill, N., Kolanowski, A., & Kurum, E. (2010). Agreeableness and activity engagement in nursing home residents with dementia. Journal of Gerontological Nursing, 36(9), 45-52. doi:10.3928/00989134-20100330-10

Hinman, M. R., & Heyl, D. M. (2002). Influence of the Eden AlternativeTM on the functional status of nursing home residents. Physical and Occupational Therapy in Geriatrics, 20(2). doi:10.1080/J148v20n02_01

Hoe, J., Hancock, G., Livingston, G., & Orrell, M. (2006). Quality of life of people with dementia in residential care homes. British Journal of Psychiatry, 188, 460-464. doi:10.1192/bjp.bp.104.007658

Holthe, T., Thorsen, K., & Josephsson, S. (2007). Occupational patterns of people with dementia in residential care: An ethnographic study. Scandinavian Journal of Occupational Therapy, 14(2), 96-107. doi:10.1080/11038120600963796

Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288. doi:10.1177/1049732305276687

Hubbard, G., Downs, M., & Tester, S. (2003). Including people with dementia in research: Challenges and strategies. Aging and Mental Health, 7(5), 351-362. doi:10.1080/1360786031000150685

Hubbard, G., Tester, S., & Downs, M. G. (2003). Meaningful social interactions between older people in institutional care settings. Ageing and Society, 23(1), 99-114. doi:10.1017/s0144686x02008991

Humble, A. M. (2009). Technique triangulation for validation in directed content analysis. International Journal of Qualitative Methods, 8(3), 34-51. doi:10.1177/160940690900800305

IBM. SPSS Statistics. Chicago: SPSS Inc. International Longevity Centre Brazil. (2015). Active ageing: A policy framework in response

to the longevity revolution. Retrieved from Rio de Janeiro, Brazil: http://ilcbrazil.org/publications/

279

Ismail, Z., Rajji, T. K., & Shulman, K. I. (2010). Brief cognitive screening instruments: An update. International Journal of Geriatric Psychiatry, 25(2), 111-120. doi:10.1002/gps.2306

Jacelon, C. S., Connelly, T. W., Brown, R., Proulx, K., & Vo, T. (2004). A concept analysis of dignity for older adults. Journal of Advanced Nursing, 48(1), 76-83. doi:10.1111/j.1365-2648.2004.03170.x

Jao, Y. L., Loken, E., MacAndrew, M., Van Haitsma, K., & Kolanowski, A. (2018). Association between social interaction and affect in nursing home residents with dementia. Aging and Mental Health, 22(6), 778-783. doi:10.1080/13607863.2017.1304526

Jones, C., Sung, B., & Moyle, W. (2015). Assessing engagement in people with dementia: A new approach to assessment using video analysis. Arch Psychiatr Nurs, 29(6), 377-382. doi:10.1016/j.apnu.2015.06.019

Jung, J., Park, S., & Kim, J. (2018). The effects of a client-centered leisure activity program on satisfaction, self-esteem and depression in elderly residents of a long-term care facility. The Journal of Physical Therapy Science, 30(1), 73-76. doi:10.1589/jpts.30.73

Junge, T., Ahler, J., Knudsen, H. K., & Kristensen, H. K. (2018). The effect and importance of physical activity on behavioural and psychological symptoms in people with dementia: A systematic mixed studies review. Dementia (London), Jan 1, 1471301218777444. doi:10.1177/1471301218777444

Kaiser, M. J., Bauer, J. M., Ramsch, C., Uter, W., Guigoz, Y., Cederholm, T., . . . MNA International Group. (2009). Validation of the Mini Nutritional Assessment Short-Form (MNA-SF): A practical tool for identification of nutritional status. The Journal of Nutrition, Health and Aging, 13(9), 782-788.

Kang, H. (2012). Correlates of social engagement in nursing home residents with dementia. Asian Nursing Research, 6(2), 75-81. doi:10.1016/j.anr.2012.05.006

Katsuno, T. (2005). Dementia from the inside: How people with early-stage dementia evaluate their quality of life. Ageing and Society, 25(02), 197-214. doi:10.1017/s0144686x0400279x

Kaufmann, E. G., & Engel, S. A. (2016). Dementia and well-being: A conceptual framework based on Tom Kitwood's model of needs. Dementia (London), 15(4), 774-788. doi:10.1177/1471301214539690

Keith, T. Z. (2019). Multiple regression and beyond: An introduction to multiple regression and structural equation modeling (Third ed.). New York: Routledge.

Kenigsberg, P., Aquino, J., Berard, A., Gzil, F., Andrieu, S., Bremond, F., . . . Robert, P. (2016). Dementia beyond 2025: Knowledge and uncertainties. Dementia (London), 15(1), 6-21. doi:10.1177/1471301215574785

King, D., Mavromaras, K., Wei, Z., He, B., Healy, J., Macaitis, K., . . . Smith, L. (2012). The aged care workforce, 2012- Final report. Retrieved from https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/11_2014/rdp004-nacwcas-report.pdf

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.

Kolanowski, A., Buettner, L., Litaker, M., & Yu, F. (2006). Factors that relate to activity engagement in nursing home residents. American Journal of Alzheimer's Disease and Other Dementias, 21(1), 15-22. doi:10.1177/153331750602100109

Kolanowski, A., Litaker, M., Buettner, L., Moeller, J., & Costa, P. T., Jr. (2011). A randomized clinical trial of theory-based activities for the behavioral symptoms of dementia in nursing home residents. Journal of the American Geriatrics Society, 59(6), 1032-1041. doi:10.1111/j.1532-5415.2011.03449.x

280

Kong, E. H., Deatrick, J. A., & Evans, L. K. (2010). The experiences of Korean immigrant caregivers of non-English-speaking older relatives with dementia in American nursing homes. Qualitative Health Research, 20(3), 319-329. doi:10.1177/1049732309354279

Kuhn, D., Fulton, B. R., & Edelman, P. (2004). Factors influencing participation in activities in dementia care settings. Alzheimer's Care Quarterly, 5(2), 141-149.

Kuosa, K., Elstad, I., & Normann, H. (2015). Continuity and change in life engagement among people with dementia. Journal of Holistic Nursing, 33(3), 205-227. doi:10.1177/0898010114564684

Kurisu, K., Terada, S., Oshima, E., Horiuchi, M., Imai, N., Yabe, M., . . . Yamada, N. (2016). Comparison of QOL between patients with different degenerative dementias, focusing especially on positive and negative affect. International Psychogeriatrics, 28(8), 1355-1361. doi:10.1017/S1041610216000491

Lai, C. K., Yeung, J. H., Mok, V., & Chi, I. (2009). Special care units for dementia individuals with behavioural problems. Cochrane Database of Systematic Reviews(4), CD006470. doi:10.1002/14651858.CD006470.pub2

Lawton, M. P. (1994a). Personality and affective correlates of leisure activity participation by older people. Journal of Leisure Research, 26(2), 138-157. doi:10.1080/00222216.1994.11969950

Lawton, M. P. (1994b). Quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord, 8(Suppl. 3), 138-150.

Lawton, M. P., Van Haitsma, K., & Klapper, J. (1996). Observed affect in nursing home residents with Alzheimer's disease. Journal of Gerontology: Psychological Sciences, 51B(1), 3-14. doi:10.1093/geronb/51b.1.p3

Lawton, M. P., Winter, L., Kleban, M. H., & Ruckdeschel, K. (1999). Affect and quality of life: Objective and subjective. Journal of Ageing and Health, 11(2), 169-198. doi:10.1177/089826439901100203

Lea, E. J., Goldberg, L. R., Price, A. D., Tierney, L. T., & McInerney, F. (2017). Staff awareness of food and fluid care needs for older people with dementia in residential care: A qualitative study. Journal of Clinical Nursing, 26(23-24), 5169-5178. doi:10.1111/jocn.14066

Legere, L. E., McNeill, S., Schindel Martin, L., Acorn, M., & An, D. (2018). Nonpharmacological approaches for behavioural and psychological symptoms of dementia in older adults: A systematic review of reviews. Journal of Clinical Nursing, 27(7-8), e1360-e1376. doi:10.1111/jocn.14007

Lemke, S., & Moos, R. H. (1980). Assessing the institutional policies of sheltered care settings. Journal of Gerontology, 35(1), 96-107. doi:10.1093/geronj/35.1.96

Li, J., Grandner, M. A., Chang, Y. P., Jungquist, C., & Porock, D. (2017). Person-centered dementia care and sleep in assisted living residents with dementia: A pilot study. Behavioral Sleep Medicine, 15(2), 97-113. doi:10.1080/15402002.2015.1104686

Liamputtong, P. (2013). Qualitative Research Methods (4th ed.). South Melbourne, Victoria, Australia: Oxford University Press.

Lillyman, S., & Bruce, M. (2016). Palliative care for people with dementia: A literature review. International Journal of Palliative Nursing, 22(2), 76-81. doi:10.12968/ijpn.2016.22.2.76

Lingler, J. H., Jablonski, R. A., Bourbonniere, M., & Kolanowski, A. (2009). Informed consent to research in long-term care settings. Research in Gerontological Nursing, 2(3), 153-161. doi:10.3928/19404921-20090428-03

Logsdon, R. G., & Albert, S. M. (1999). Assessing quality of life in Alzheimer's disease: Conceptual and methodological issues. Journal of Mental Health and Aging, 5(1), 3-6.

281

Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64(3), 510-519. doi:10.1097/00006842-200205000-00016

Lu, Y. Y., Bakas, T., Yang, Z., Weaver, M. T., Austrom, M. G., & Haase, J. E. (2016). Feasibility and effect sizes of the revised Daily Engagement of Meaningful Activities Intervention for individuals with mild cognitive impairment and their caregivers. Journal of Gerontological Nursing, 42(3), 45-58. doi:10.3928/00989134-20160212-08

MacAndrew, M., Fielding, E., Kolanowski, A., O'Reilly, M., & Beattie, E. (2017). Observing wandering-related boundary transgression in people with severe dementia. Aging and Mental Health, 21(11), 1197-1205. doi:10.1080/13607863.2016.1211620

Mansbach, W., Mace, R., Clark, K., & Firth, I. (2017). Meaningful activity for long-term care residents with dementia: A comparison of activities and raters. Gerontologist, 57(3), 461-468. doi:10.1093/geront/gnv694

Mavromaras, K., Knight, G., Isherwood, L., Crettenden, A., Flavel, J., Karmel, T., . . . Wei, Z. (2017). 2016 National aged care workforce census and survey: The aged care workforce, 2016. Retrieved from Canberra, ACT: https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/03_2017/nacwcs_final_report_290317.pdf

McCormack, B. (2003). A conceptual framework for person-centred practice with older people. International Journal of Nursing Practice, 9(3), 202-209.

McCormack, B. (2004). Person-centredness in gerontological nursing: An overview of the literature. International Journal of Older People Nursing, 13(3a), 31-38. doi:10.1111/j.1365-2702.2004.00924.x

McMaster, M., Fielding, E., Lim, D., Moyle, W., Beattie, E., & AusQoL Group. (2018). A cross-sectional examination of the prevalence of psychotropic medications for people living with dementia in Australian long-term care facilities: Issues of concern. International Psychogeriatrics, 30(7), 1019-1026. doi:10.1017/S1041610217002447

McMinn, B., & Draper, B. (2005). Vocally disruptive behaviour in dementia: Development of an evidence based practice guideline. Aging & Mental Health, 9(1), 16-24. doi:10.1080/13607860512331334068

Meeks, S., & Depp, C. A. (2003). Pleasant events-based behavioral intervention for depression in nursing home residents. Clinical Gerontologist, 25(1-2), 125-148. doi:10.1300/J018v25n01_07

Mentes, J. C., & Buckwalter, K. C. (1998). Dementia special care units programming and staffing issues. Journal of Gerontological Nursing, 24(1), 6-8. doi:10.3928/0098-9134-19980101-07

Mesman, G. R., Buchanan, J. A., Husfeldt, J. D., & Berg, T. M. (2011). Identifying preferences in persons with dementia: Systematic preference testing vs. caregiver and family member report. Clinical Gerontologist, 34(2), 154-159. doi:10.1080/07317115.2011.539516

Mills, I., Frost, J., Kay, E., & Moles, D. R. (2015). Person-centred care in dentistry: The patients' perspective. British Dental Journal, 218(7), 407-413. doi:10.1038/sj.bdj.2015.248

Milte, R., Shulver, W., Killington, M., Bradley, C., Ratcliffe, J., & Crotty, M. (2016). Quality in residential care from the perspective of people living with dementia: The importance of personhood. Archives of Gerontology and Geriatrics,, 63, 9-17. doi:10.1016/j.archger.2015.11.007

Mitchell, S. L., Teno, J. M., Kiely, D. K., Shaffer, M. L., Jones, R. N., Prigerson, H. G., . . . Hamel, M. B. (2009). The clinical course of advanced dementia. The New England Journal of Medicine, 361(16), 1529-1538. doi:10.1056/NEJMoa0902234

282

Mohler, R., Renom, A., Renom, H., & Meyer, G. (2018). Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care. Cochrane Database of Systematic Reviews, 2, CD009812. doi:10.1002/14651858.CD009812.pub2

Molony, S. L., Kolanowski, A., Van Haitsma, K., & Rooney, K. E. (2018). Person-centered assessment and care planning. Gerontologist, 58(Suppl 1), S32-S47. doi:10.1093/geront/gnx173

Mondaca, M., Johansson, K., Josephsson, S., & Rosenberg, L. (2019). In search for the "humane": Staffs' perspectives on everyday activities in a nursing home. Aging and Mental Health, 10, 1-10. doi:10.1080/13607863.2019.1574709

Morgan, S., & Yoder, L. H. (2012). A concept analysis of person-centered care. Journal of Holistic Nursing, 30(1), 6-15. doi:10.1177/0898010111412189

Morley, J., Philpot, C., Gill, D., & Berg-Weger, M. (2014). Meaningful activities in the nursing home. Journal of the American Medical Directors Association, 15(2), 79-81. doi:10.1016/j.jamda.2013.11.022

Morris, J. C. (1993). The clinical dementia rating (CDR): Current version and scoring rules. Neurology, 43(11), 2412-2414. doi:10.1212/wnl.43.11.2412-a

Morris, J. N., Declercq, A., Hirdes, J. P., Finne-Soveri, H., Fries, B. E., James, M. L., . . . Topinkova, E. (2018). Hearing the voice of the resident in long-term care facilities-An internationally based approach to assessing quality of life. J Am Med Dir Assoc, 19(3), 207-215. doi:10.1016/j.jamda.2017.08.010

Moyle, W. (2010). Is quality of life being compromised in people with dementia in long-term care? International Journal of Older People Nursing, 5(3), 245-252. doi:10.1111/j.1748-3743.2010.00230.x

Moyle, W., Fetherstonhaugh, D., Greben, M., Beattie, E., & AusQoL Group. (2015). Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach. BMC Geriatrics, 15, 50. doi:10.1186/s12877-015-0050-z

Moyle, W., Venturato, L., Griffiths, S., Grimbeek, P., McAllister, M., Oxlade, D., & Murfield, J. (2011). Factors influencing quality of life for people with dementia: A qualitative perspective. Aging and Mental Health, 15(8), 970-977. doi:10.1080/13607863.2011.583620

Mulhall, A. (2003). In the field: Notes on observation in qualitative research. Journal of Advanced Nursing, 41(3), 306-313. doi:10.1046/j.1365-2648.2003.02514.x

Murphy, J. L., Holmes, J., & Brooks, C. (2017). Nutrition and dementia care: Developing an evidence-based model for nutritional care in nursing homes. BMC Geriatrics, 17(1), 55. doi:10.1186/s12877-017-0443-2

Murphy, K., Shea, E. O., & Cooney, A. (2007). Quality of life for older people living in long-stay settings in Ireland. Journal of Clinical Nursing, 16(11), 2167-2177. doi:10.1111/j.1365-2702.2006.01865.x

Nazarko, L. (2014). Quality palliative care for the person with dementia. British Journal of Healthcare Assistants, 8(2), 74-79. doi:10.12968/bjha.2014.8.2.74

Nell, D., Neville, S., Bellew, R., O'Leary, C., & Beck, K. L. (2016). Factors affecting optimal nutrition and hydration for people living in specialised dementia care units: A qualitative study of staff caregivers' perceptions. Australasian Journal on Ageing, 35(4), E1-E6. doi:10.1111/ajag.12307

Nikmat, A. W., Hawthorne, G., & Al-Mashoor, S. H. (2015). The comparison of quality of life among people with mild dementia in nursing home and home care: A preliminary report. Dementia (London), 14(1), 114-125. doi:10.1177/1471301213494509

283

Nolan, M., Davies, S., Brown, J., Keady, J., & Nolan, J. (2004). Beyond person-centred care: A new vision for gerontological nursing. Journal of Clinical Nursing, 13(3a), 45-53. doi:10.1111/j.1365-2702.2004.00926.x

Nolan, M., Keady, J., & Aveyard, B. (2001). Relationship-centred care is the next logical step. British Journal of Nursing, 10(12), 757. doi:10.12968/bjon.2001.10.12.12336

Novek, S., & Wilkinson, H. (2017). Safe and inclusive research practices for qualitative research involving people with dementia: A review of key issues and strategies. Dementia (London), 18(3), 1042-1059. doi:10.1177/1471301217701274

Nyman, S., & Szymczynska, P. (2016). Meaningful activities for improving the wellbeing of people with dementia: Beyond mere pleasure to meeting fundamental psychological needs. Perspectives in Public Health, 136(2), 99-107. doi:10.1177/1757913915626193

O'Connor, D. W., Ames, D., Gardner, B., & King, M. (2009). Psychosocial treatments of psychological symptoms in dementia: A systematic review of reports meeting quality standards. International Psychogeriatrics, 21(2), 241-251. doi:10.1017/S1041610208008223

O'Reilly, M., Fielding, E., Chenoweth, L., McMaster, M., Beattie, E., & AusQoL Group. (2016). Measuring person-centred care in the nursing home: Philosophy, practices and physical environment. Paper presented at the Gerontological Society of America Annual Scientific Meeting, New Orleans.

O'Shea, E., Timmons, S., O'Shea, E., Fox, S., & Irving, K. (2019). Respite in dementia: An evolutionary concept analysis. Dementia (London), 18(4), 1446-1465. doi:10.1177/1471301217715325

Olsen, C., Pedersen, I., Bergland, A., Enders-Slegers, M. J., & Ihlebaek, C. (2016). Engagement in elderly persons with dementia attending animal-assisted group activity. Dementia (London), 18(1), 245-261. doi:10.1177/1471301216667320

Palacios-Cena, D., Gomez-Calero, C., Cachon-Perez, J., Velarde-Garcia, J. F., Martinez-Piedrola, R., & Perez-De-Heredia, M. (2016). Is the experience of meaningful activities understood in nursing homes? A qualitative study. Geriatric Nursing, 37(2), 110-115. doi:10.1016/j.gerinurse.2015.10.015

Palese, A., Del Favero, C., Antonio Zuttion, R., Ferrario, B., Ponta, S., Grassetti, L., & Ambrosi, E. (2016). Inactive residents living in nursing homes and associated predictors: Findings from a regional-based, Italian retrospective study. Journal of the American Medical Directors Association, 17(12), 1099-1105. doi:10.1016/j.jamda.2016.07.010

Parkinson, L., & Radford, K. (2019). Delivering inclusive and quality services in community and residential aged care settings. Australasian Journal on Ageing, 38(2), 80-84. doi:10.1111/ajag.12683

Peoples, H., Pedersen, L. F., & Moestrup, L. (2018). Creating a meaningful everyday life: Perceptions of relatives of people with dementia and healthcare professionals in the context of a Danish dementia village. Dementia (London), Dec, 1471301218820480. doi:10.1177/1471301218820480

Phinney, A. (2006). Family strategies for supporting involvement in meaningful activity by persons with dementia Journal of Family Nursing, 12(1), 80-101. doi:10.1177/1074840705285382

Phinney, A., Chaudhury, H., & O'Connor, D. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging and Mental Health, 11(4), 384-393. doi:10.1080/13607860601086470

Pringle, J., Johnston, B., & Buchanan, D. (2015). Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review. Palliative Medicine, 29(8), 675-694. doi:10.1177/0269216315575681

284

QSR International Pty Ltd. (2010). NVivo qualitative data analysis software (Version 11). Ready, R. E., & Ott, B. R. (2003). Quality of life measures for dementia. Health and Quality

of Life Outcomes. Regier, N. G., Hodgson, N. A., & Gitlin, L. N. (2017). Characteristics of Activities for Persons

With Dementia at the Mild, Moderate, and Severe Stages. Gerontologist, 57(5), 987-997. doi:10.1093/geront/gnw133

Reid, R. C., & Chappell, N. L. (2003). Staff ratios and resident outcomes in special care units: Do activity aides make a difference? Journal of Applied Gerontology, 22(1), 89-103. doi:10.1177/0733464802250047

Reisberg, B., Ferris, S. H., de Leon, M. J., & Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139(9), 1136-1139. doi:10.1176/ajp.139.9.1136

Resnick, B., Gruber-Baldini, A.-L., Pretzer-Aboff, I., Galik, E., Buie, V. C., Russ, K., & Zimmerman, S. (2007). Reliability and validity of the evaluation to sign consent measure. The Gerontologist, 47(1), 69-77. doi:10.1093/geront/47.1.69

Richards, K., D'Cruz, R., Harman, S., & Stagnitti, K. (2015). Comparison of a traditional and non-traditional residential care facility for persons living with dementia and the impact of the environment on occupational engagement. Australian Occupational Therapy Journal,, 62(6), 438-448. doi:10.1111/1440-1630.12243

Ritchey, L. H., & Dietz, B. E. (2001). Clarifying the measurement of activity. Activities, Adaptation & Aging, 26(1), 1-21. doi:10.1300/J016v26n01_01

Robinson, S. B., & Rosher, R. B. (2006). Tangling with the barriers to cultural change: Creating a resident-centered nursing home environment. Journal of Gerontological Nursing, 32(10), 19-27. doi:10.3928/00989134-20061001-04

Rodgers, B. L. (2000). Philosophical foundations of concept development. In B. L. Rodgers & K. A. Knafl (Eds.), Concept development in nursing. Philadelphia, Pennsylvania: W.B. Saunders Company.

Roland, K., & Chappell, N. (2015). Meaningful activity for persons with dementia: Family caregiver perspectives. American Journal of Alzheimer's Disease and Other Dementias, 30(6), 559-568. doi:10.1177/1533317515576389

Roley, S. S., DeLany, J. V., Barrows, C. J., Brownrigg, S., Honaker, D., Sava, D. I., . . . American Occupational Therapy Association Commission on Practice. (2008). Occupational therapy practice framework: Domain and process 2nd Edition. The American Journal of Occupational Therapy, 62(6), 625-683. doi:10.5014/ajot.62.6.625

Rosendahl, S. P., Soderman, M., & Mazaheri, M. (2016). Immigrants with dementia in Swedish residential care: An exploratory study of the experiences of their family members and Nursing staff. BMC Geriatrics, 16(16), 18. doi:10.1186/s12877-016-0200-y

Royal Commission into Aged Care Quality and Safety. (2018). Terms of reference. Retrieved from https://agedcare.royalcommission.gov.au/Pages/Terms-of-reference.aspx

Royal Commission into Aged Care Quality and Safety. (2019). Navigating the maze: An overview of Australia's current aged care system. Retrieved from https://agedcare.royalcommission.gov.au/publications/Pages/default.aspx

Runci, S. J., O'Connor, D., & Redman, J. R. (2005). Language needs and service provision for older persons from culturally and linguistically diverse backgrounds in south-east Melbourne residential care facilities. Australasian Journal on Ageing, 24(3), 157-161. doi:10.1111/j.1741-6612.2005.00106.x

Sadler, J. J. (2000). A multiphase approach to concept analysis and development. In B. L. Rodgers & K. A. Knafl (Eds.), Concept development in nursing: Foundations, techniques and applications Philadelphia, Pennsylvania: W.B. Saunders Company.

285

Savva, G. M., Zaccai, J., Matthews, F. E., Davidson, J. E., McKeith, I., Brayne, C., & Medical Research Council Cognitive Function Ageing Study. (2009). Prevalence, correlates and course of behavioural and psychological symptoms of dementia in the population. British Journal of Psychiatry, 194(3), 212-219. doi:10.1192/bjp.bp.108.049619

Schreiner, A. S., Yamamoto, E., & Shiotani, H. (2005). Positive affect among nursing home residents with Alzheimer's dementia: The effect of recreational activity. Aging and Mental Health, 9(2), 129-134. doi:10.1080/13607860412331336841

Schwartz-Barcott, D., & Kim, H. S. (1986). A hybrid model for concept development. In P. L. Chinn (Ed.), Nursing research methodology: Issues and implementation. Rockville, Maryland: Aspen Publishers.

Sclan, S. G., & Reisberg, B. (1992). Functional assessment staging (FAST) in Alzheimer's disease: Reliability, validity and ordinality. International Psychogeriatrics, 4(Supplement 1), 55-69.

Sheard, D. (2013). Mattering in a dementia care home- The Butterfly Approach. Retrieved from www.dementiacarematters.com

Sheard, D. (2015a). Dementia: Emotional intelligence key to care. Australian Ageing Agenda, May-June 2015, 44.

Sheard, D. (2015b). Real culture change: The Butterfly Care Homes experience. Australian Journal of Dementia Care, 4(2), 29-32.

Sheppard, C. L., McArthur, C., & Hitzig, S. L. (2016). A systematic review of Montessori-based activities for persons with dementia. Journal of the American Medical Directors Association, 17(2), 117-122. doi:10.1016/j.jamda.2015.10.006

Siedlecki, K. L., Tatarina, O., Sanders, L., Albert, M., Blacker, D., Dubois, B., . . . Stern, Y. (2009). Comparison of patient and caregiver reports of patient activity participation and its relationship to mental health in patients with Alzheimer's disease. Journal of Gerontology: Psychological Sciences, 64(6), 687-695. doi:10.1093/geronb/gbp071

Slater, L. (2006). Person-centredness: A concept analysis. Contemporary Nurse, 23(1), 135-144. doi:10.5555/conu.2006.23.1.135

Sloane, P. D., Zimmerman, S., Williams, C. S., Reed, P. S., Gill, K. S., & Preisser, J. S. (2005). Evaluating the quality of life of long-term care residents with dementia. The Gerontologist, 45(Special Issue 1), 37-49. doi:10.1093/geront/45.suppl_1.37

Smit, D., de Lange, J., Willemse, B., & Pot, A. M. (2012). The relationship between small-scale care and activity involvement of residents with dementia. International Psychogeriatrics, 24(5), 722-732. doi:10.1017/S1041610211002377

Smit, D., de Lange, J., Willemse, B., & Pot, A. M. (2017). Predictors of activity involvement in dementia care homes: A cross-sectional study. BMC Geriatrics, 17(1), 175. doi:10.1186/s12877-017-0564-7

Smit, D., de Lange, J., Willemse, B., Twisk, J., & Pot, A. M. (2016). Activity involvement and quality of life of people at different stages of dementia in long term care facilities. Aging and Mental Health, 20(1), 100-109. doi:10.1080/13607863.2015.1049116

Smit, D., Willemse, B., de Lange, J., & Pot, A. M. (2014). Wellbeing-enhancing occupation and organizational and environmental contributors in long-term dementia care facilities: An explorative study. International Psychogeriatrics, 26(1), 69-80. doi:10.1017/S1041610213001397

Smith, M., Kolanowski, A., Buettner, L., & Buckwalter, K. (2009). Beyond bingo: Meaningful activities for persons with dementia in nursing homes. Annals of Long Term Care, 17(7), 22-30.

Smith, R., Fleming, R., Chenoweth, L., Jeon, Y. H., Stein-Parbury, J., & Brodaty, H. (2012). Validation of the Environmental Audit Tool in both purpose-built and non-purpose-

286

built dementia care settings. Australasian Journal on Ageing, 31(3), 159-163. doi:10.1111/j.1741-6612.2011.00559.x

State of Victoria Department of Health. (2010). Innovative workforce responses to a changing aged care environment. Retrieved from Melbourne: https://www2.health.vic.gov.au/about/publications/researchandreports/workforce-responses-changing-aged-care-environment

Strivens, E., & Stirling, C. (2019). It's time to move from researching problems to providing solutions. Australasian Journal on Ageing, 38(2), 78-79. doi:10.1111/ajag.12682

Tak, S. H., Kedia, S., Tongumpun, T. M., & Hong, S. H. (2015). Activity engagement: Perspectives from nursing home residents with dementia. Educational Gerontology, 41(3), 182-192. doi:10.1080/03601277.2014.937217

Teng, E. L., & Chui, H. C. (1987). The Modified Mini-Mental State (3MS) examination. Journal of Clinical Psychiatry, 48(8), 314-318.

Thanakwang, K., & Isaramalai, S. (2013). Productive engagement in older adults: A concept analysis. Nursing and Health Sciences, 15(1), 124-130. doi:10.1111/nhs.12015

The Institute of Governance and Policy Analysis. (2017). The economic cost of dementia in Australia 2016-2056. Retrieved from Canberra: https://www.dementia.org.au/dementia-news/issue-07/economic-cost-of-dementia

Thomas, J., O'Connell, B., & Gaskin, C. (2013). Residents' perceptions and experiences of social interaction and participation in leisure activities in residential aged care. Contemporary Nurse, 45(2), 244-254. doi:10.5172/conu.2013.45.2.244

Tolman, J., & Morrissey, M. (2016). Dementia care: How we get it wrong and what's needed to get it right. Australian Journal of Dementia Care, 5(1), 29-31.

Tondora, J., Miller, R., Slade, M., & Davidson, L. (2014). Partnering for recovery in mental health: A practical guide to person-centered planning. Oxford: John Wiley and Sons Ltd.

Trahan, M. A., Kuo, J., Carlson, M. C., & Gitlin, L. N. (2014). A systematic review of strategies to foster activity engagement in persons with dementia. Health Education and Behavior, 41(1 Suppl), 70S-83S. doi:10.1177/1090198114531782

Ulbricht, C. M., Rothschild, A. J., Hunnicutt, J. N., & Lapane, K. L. (2017). Depression and cognitive impairment among newly admitted nursing home residents in the USA. International Journal of Geriatric Psychiatry, 32(11), 1172-1181. doi:10.1002/gps.4723

van Beek, A. P., Frijters, D. H., Wagner, C., Groenewegen, P. P., & Ribbe, M. W. (2011). Social engagement and depressive symptoms of elderly residents with dementia: A cross-sectional study of 37 long-term care units. International Psychogeriatrics, 23(4), 625-633. doi:10.1017/S1041610210002061

van der Linde, R. M., Dening, T., Stephan, B. C., Prina, A. M., Evans, E., & Brayne, C. (2016). Longitudinal course of behavioural and psychological symptoms of dementia: Systematic review. British Journal of Psychiatry, 209(5), 366-377. doi:10.1192/bjp.bp.114.148403

van der Ploeg, E. S., Eppingstall, B., Camp, C. J., Runci, S. J., Taffe, J., & O'Connor, D. W. (2013). A randomized crossover trial to study the effect of personalized, one-to-one interaction using Montessori-based activities on agitation, affect, and engagement in nursing home residents with Dementia. International Psychogeriatrics, 25(4), 565-575. doi:10.1017/S1041610212002128

van der Zon, A., Wetzels, R. B., Bor, H., Zuidema, S. U., Koopmans, R., & Gerritsen, D. L. (2018). Two-year course of quality of life in nursing home residents with dementia. American Journal of Geriatric Psychiatry, 26(7), 754-764. doi:10.1016/j.jagp.2018.01.202

287

Van Haitsma, K. S., Curyto, K., Abbott, K. M., Towsley, G. L., Spector, A., & Kleban, M. (2015). A randomized controlled trial for an individualized positive psychosocial intervention for the affective and behavioral symptoms of dementia in nursing home residents. Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 70(1), 35-45. doi:10.1093/geronb/gbt102

Venturato, L. (2010). Dignity, dining and dialogue: Reviewing the literature on quality of life for people with dementia. International Journal of Older People Nursing, 5(3), 228-234. doi:10.1111/j.1748-3743.2010.00236.x

Vernooij-Dassen, M. (2007). Meaningful activities for people with dementia. Aging and Mental Health, 11(4), 359-360. doi:10.1080/13607860701498443

Volicer, L., & Simard, J. (2015). Palliative care and quality of life for people with dementia: Medical and psychosocial interventions. International Psychogeriatrics, 27(10), 1623-1634. doi:10.1017/S1041610214002713

Volicer, L., van der Steen, J. T., & Frijters, D. H. (2013). Involvement in activities and wandering in nursing home residents with cognitive impairment. Alzheimer Disease and Associated Disorders,, 27(3), 272-277. doi:10.1097/WAD.0b013e31826d012e

von Essen, L. (2009). Proxy ratings of patient quality of life: Factors related to patient–proxy agreement. Acta Oncologica, 43(3), 229-234. doi:10.1080/02841860410029357

von Gunten, A., Alnawaqil, A. M., Abderhalden, C., Needham, I., & Schupbach, B. (2008). Vocally disruptive behavior in the elderly: A systematic review. International Psychogeriatrics, 20(4), 653-672. doi:10.1017/S1041610208006728

Wadensten, B. (2006). An analysis of psychosocial theories of ageing and their relevance to practical gerontological nursing in Sweden. Scandanavian Journal of Caring Sciences, 20(3), 347-354. doi:10.1111/j.1471-6712.2006.00414.x

Wadensten, B., & Carlsson, M. (2003). Theory-driven guidelines for practical care of older people, based on the theory of gerotranscendence. Journal of Advanced Nursing, 41(5), 462-470. doi:10.1046/j.1365-2648.2003.02554.x

Walker, H., & Paliadelis, P. (2016). Older peoples' experiences of living in a residential aged care facility in Australia. Australasian Journal on Ageing, 35(3), E6-E10. doi:10.1111/ajag.12325

Walker, L., & Avant, K. (2011). Strategies for theory construction in nursing (5th ed.). Upper Saddle River, NJ: Pearson Education, Inc.

Warden, V., Hurley, A. C., & Volicer, L. (2003). Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. Journal of the American Medical Directors Association, 4(1), 9-15. doi:10.1097/01.JAM.0000043422.31640.F7

Watson, D. (2005). Rethinking the mood and anxiety disorders: A quantitative hierarchical model for DSM-V. Journal of Abnormal Psychology, 114(4), 522-536. doi:10.1037/0021-843X.114.4.522

Werner-Seidler, A., Banks, R., Dunn, B. D., & Moulds, M. L. (2013). An investigation of the relationship between positive affect regulation and depression. Behaviour Research and Therapy, 51(1), 46-56. doi:10.1016/j.brat.2012.11.001

Westbroek, H., Klaassen, K., Bulte, A., & Pilot, A. (2010). Providing students with a sense of purpose by adapting a professional practice. International Journal of Science Education, 32(5), 603-627. doi:10.1080/09500690902721699

Windle, G. (2010). What is resilience? A review and concept analysis. Reviews in Clinical Gerontology, 21(2), 152-169. doi:10.1017/S0959259810000420

Wood, W., Harris, S., Snider, M., & Patchel, S. A. (2005). Activity situations on an Alzheimer's disease special care unit and resident environmental interactions, time use, and affect.

288

American Journal of Alzheimer's Disease and Other Dementias, 20(2), 105-118. doi:10.1177/153331750502000210

Wood, W., Womack, J., & Hooper, B. (2009). Dying of boredom: An exploratory case study of time use, apparent affect, and routine activity situations on two Alzheimer's special care units. American Journal of Occupational Therapy, 63(3), 337-350. doi:10.5014/ajot.63.3.337

World Health Organisation. (2004). Introducing the WHOQOL instruments. Retrieved from http://depts.washington.edu/seaqol/docs/WHOQOL_Info.pdf

Wu, Y. T., Beiser, A. S., Breteler, M. M. B., Fratiglioni, L., Helmer, C., Hendrie, H. C., . . . Brayne, C. (2017). The changing prevalence and incidence of dementia over time: Current evidence. Nature Reviews Neurology, 13(6), 327-339. doi:10.1038/nrneurol.2017.63

Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., & Leirer, V. O. (1982). Development and validation of a geriatric depression screening scale: A preliminary report. Journal of Psychiatric Research, 17(1), 37-49. doi:10.1016/0022-3956(82)90033-4

Zimmerman, S., Sloane, P. D., Williams, C. S., Reed, P. S., Preisser, J. S., Eckert, J. K., . . . Dobbs, D. (2005). Dementia care and quality of life in assisted living and nursing homes. The Gerontologist, 45(Special Issue 1), 133-146. doi:10.1093/geront/45.suppl_1.133

289

Appendices

Appendix 1

Published concept analysis paper

Citation: Tierney, L., & Beattie, E. (2020). Enjoyable, engaging and individualised: A concept

analysis of meaningful activity for older adults with dementia. International Journal of Older

People Nursing, doi: 10.1111/opn.12306

Abstract

Aim

The term ‘meaningful activity’ is widely used in policy, practice and the research literature. However, definition and use of the term is unclear and inconsistent. A concept analysis was conducted to explore the fundamental attributes that make an activity meaningful for older adults with dementia and propose a conceptual model for understanding ‘meaningful activity’ in this population.

Methods

This study followed Walker and Avant’s method of concept analysis. Searches were conducted in the Scopus, MEDLINE, CINAHL, PubMed, Academic Search Elite and Web of Science databases for literature using the term ‘meaningful activity’. Papers published before 1996 were excluded.

Results Twenty-nine papers concerned with ‘meaningful activity’ were analysed. This analysis identified five attributes that make activities meaningful for people with dementia: 1) enjoyable; 2) suited to the individual’s skills, abilities and preferences; 3) related to personally relevant goals; 4) engaging; and 5) related to an aspect of identity. The conceptual model illustrates how individual and opportunity factors influence participation in ‘meaningful activity’ and the consequences of this participation as discussed in the existing literature.

Conclusion

The findings of this concept analysis provide insight into what characteristics make an activity meaningful. This understanding can be used by those involved in researching, planning or delivering services and care for people with dementia to encourage and support participation in activities that are meaningful to individuals.

Keywords

Meaningful activity, concept analysis, dementia, person-centred care, older adults

290

Summary statement of implications for practice

What does this research add to existing knowledge in gerontology?

The concept analysis provides a more comprehensive understanding of ‘meaningful activity’ based on what is known about the concept in a range of populations and contexts.

The model of meaningful activity for older adults with dementia links the attributes of ‘meaningful activity’ with the antecedents and consequences of participation.

What are the implications of this new knowledge for nursing care with older people?

The attributes identified in this concept analysis provide guidance for those involved in providing support and care for older adults with dementia to identify and enable participation in ‘meaningful activity’.

The findings can be used to inform the development of activity programs and opportunities for older adults with dementia, focusing on activities that have meaning for individuals.

How could the findings be used to influence policy or practice or research or education?

A practical definition of ‘meaningful activity’ has been developed to facilitate a common understanding of the concept and use of the term in policy, practice, research and education.

The individualised and highly subjective nature of ‘meaningful activity’ implies that facilitating participation in them could be one element of person-centred care.

291

Introduction

Person-centred care is the dominant approach to caring for people with dementia and considered the gold standard (Du Toit, Shen, & McGrath, 2018; Nolan, Davies, Brown, Keady, & Nolan, 2004). Person-centred approaches to care respect individuality, focus on individuals’ strengths rather than impairments and empower individual decision making (Brooker, 2004; Kitwood, 1997; McCormack, 2003; Morgan & Yoder, 2012; Slater, 2006). Using this approach, the caregiver develops a deep understanding of the context of the person’s life to better recognise their beliefs, values and how they make sense of their experience of illness and care (Kitwood, 1997; McCormack, 2003, 2004). Under the framework of person-centred care for people living with dementia activity has become a focus of increased scholarship and a range of terms have emerged in the literature to describe these activities. These include ‘tailored’ (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski, Litaker, Buettner, Moeller, & Costa, 2011; Mohler, Renom, Renom, & Meyer, 2018), ‘individualised’ (Van Haitsma et al., 2015), ‘preferred’ (Cohen-Mansfield, Gavendo, & Blackburn, 2017) and ‘purposeful’ (Dementia Australia, 2019), each enriching our common understanding of the centrality of the unique person in activity planning. This focus is consistent with the view that the value of recreational activities is based on the essential human need for activity (Csikszentmihalyi, 1993). It also reflects the growing interest in the value of activities that are suited to the unique person and require intervention beyond basic provision of general activities, and the acceptance of activity as a therapeutic tool to improve wellbeing. Additionally, there is growing concern for considering the perspectives and experiences of people living with dementia, including how they perceive, value or find meaning in the activities they are participating in (Aged Care Quality and Safety Commission, 2018; Hubbard, Downs, & Tester, 2003; Phinney, Chaudhury, & O'Connor, 2007). These types of activities provide a strategy for enacting some elements of person-centred care for people with dementia (Edvardsson, Varrailhon, & Edvardsson, 2014; Han, Radel, McDowd, & Sabata, 2016b). This viewpoint about activity questions the adequacy of more traditional types of large scale, fixed group activities for people with dementia and promotes a need to identify and facilitate participation in activities that are more suited to each person (Buettner & Fitzsimmons, 2003). There is also a belief that these types of activities have the potential to have greater positive benefits for those participating than participating in activities that are not tailored, individualised or meaningful (Eakman, Carlson, & Clark, 2010b; Kolanowski, Buettner, Litaker, & Yu, 2006). In this context, ‘meaningful activity’ has emerged as an important concept that needs to be defined and further explored. It arguably differs from terms such as ‘individualised’, ‘preferred’ and ‘purposeful’ because it encompasses an inference that by taking part in individual, tailored or preferred activities the person derives ‘meaning’ from the experience and that experiencing ‘meaning’ has positive health benefits. Csikszentmihalyi (1993) suggested that, where the person’s capabilities and the degree of challenge in the activity is so closely aligned that the experience is intensely enjoyable to them, a natural ‘flow state’ is in process. That ‘flow state’ may reflect the cognitive and emotional meaning the activity has for the person because the activity is neither too demanding nor too simple and can be achieved. At least one study (Payne, Jackson, Noh, & Stine-Morrow, 2011) has quantified ‘flow state’ in a sample of older adults using a questionnaire; however, the concept has yet to be examined in a sample of older adults with dementia. The literature suggests examples of activities that are considered meaningful for people with dementia. These can include reminiscence therapy, social interactions, hobbies, household

292

chores and individual activities such as reading (Harmer & Orrell, 2008; Phinney et al., 2007). However, the utility of compiling a list of ‘meaningful activities’ is limited, as the meaning ascribed to specific activities and reasons for participating in them will vary between individuals (Carless, 2008; Eakman, 2013; Han, Radel, McDowd, & Sabata, 2016a; Mansbach, Mace, Clark, & Firth, 2017). It is, therefore, more useful to understand what makes an activity meaningful. This will encourage a more person-centred approach to identifying ‘meaningful activities’ and supporting involvement of people with dementia. Despite the interest in, and common use of the term ‘meaningful activity’, the definition and understanding of it in the literature is ambiguous and inconsistent (Conti, Voelkl, & McGuire, 2008; Eakman, 2011; Mansbach et al., 2017). Some definitions focus on a broad understanding of the concept such as “engagement in life” (Kuosa, Elstad, & Normann, 2015; p2) or occupations “perceived as significant to that person” (Phinney et al., 2007; p385). Others focus on a specific aspect such as activities that “fulfil a goal or purpose” (Goldberg, Brintnell, & Goldberg, 2002; p18). This lack of consistency has hindered theoretical development of the concept (Eakman, 2011) and resulted in limited conceptual and empirical literature to confirm the common belief that participation in ‘meaningful activity’ is beneficial for people with dementia (Phinney et al., 2007). The inconsistent definition and use of the term ‘meaningful activity’ is further complicated by a lack of distinction from other types of ‘individualised’, ‘tailored’ or ‘preferred’ activities and similar concepts such as ‘engagement’ and ‘leisure activity’. The concept of productive engagement in older adults has been analysed and is defined as “the process of continuing to work either paid or unpaid, caring for others, engaging in social activities, and growing spiritually” (Thanakwang & Isaramalai, 2013, p128). The concept of leisure in older people has also been analysed using a concept analysis approach, identifying three defining attributes including freedom from obligations and freedom of choice (Heung & Yuen Loke, 2012). The third attribute identified was ‘meaningful or enjoyable experiences’, suggesting that ‘meaningful activity’ is closely related to leisure. However, discussion of this attribute focused on enjoyment and did not explore meaningful experiences in detail. Although related concepts have been analysed, there has been no formal systematic analysis of the concept ‘meaningful activity’ with many authors assuming the attributes of what constitutes such an activity type and confers meaning for the person. Therefore, a systematic, theory-driven analysis of the concept ‘meaningful activity’ is required to better understand the concept and facilitate the identification of and participation in ‘meaningful activities’. The main objectives of this concept analysis were to: 1) explore the fundamental attributes that make an activity meaningful for older adults with dementia; 2) define the concept and; 3) propose a conceptual model for understanding ‘meaningful activity’ in this context.

Methods The concept was analysed using the method described by Walker and Avant (2011) which consists of eight steps: select concept, determine purpose, identify uses, define attributes, identify model case, develop additional cases, identify antecedents and consequences and define empirical referents. A concept analysis is based on the existing literature to understand the critical elements of the concept and how it is currently used. The focus of a concept analysis is to better understand a specific key concept using literature from a range of fields beyond

293

nursing and across of range of population groups. Walker and Avant (2011) suggest using dictionaries and the literature both within and outside the specific area of interest to limit bias, provide a broad evidence base for the analysis and support the utility and richness of the findings. The findings of a concept analysis can be used to develop a definition of the concept and a conceptual model connecting the antecedents and consequences to the attributes (O'Shea, Timmons, O'Shea, Fox, & Irving, 2019; Thanakwang & Isaramalai, 2013; Windle, 2010).

Search Strategy

Dictionaries were initially used to identify common meanings of the individual words in the concept followed by a review of the concept ‘meaningful activity’ in the research literature. The following search strategy was developed in consultation with an expert librarian. The search terms ‘meaningful activity’ and ‘meaningful activities’ were used to search the Scopus, MEDLINE, CINAHL, PubMed, Academic Search Elite and Web of Science databases for relevant literature. While other terms such as ‘individualised’, ‘tailored’, ‘preferred’ or ‘purposeful’ activities may be related to ‘meaningful activity’ the terms were not included in the search. Walker and Avant (2011) acknowledge that concepts do not exist in isolation, they are surrounded by a network of related concepts. However, when selecting a concept for concept analysis it is important to be specific to ensure the analysis is focused and the findings make a useful contribution to knowledge development (Walker & Avant, 2011). The purpose of a concept analysis is to understand how a specific concept is understood and how the term is used. Therefore, although literature in these related activity areas provides a useful context, a detailed analysis of that literature is outside of the scope of this analysis of the concept ‘meaningful activity’. Previously published concept analyses have similarly used specific search terms and not included related concepts (Boggatz, 2015; Hermansson & Martensson, 2011; Heung & Yuen Loke, 2012; Jacelon, Connelly, Brown, Proulx, & Vo, 2004). Publications were included if they met one of the following criteria in relation to human behaviour: 1) qualitative research focusing on what constitutes ‘meaningful activity’ or which provide a definition of the concept; 2) quantitative studies of participation in ‘meaningful activity’ which also define the concept; or 3) reporting on the development of a tool to measure participation in ‘meaningful activity’ if the concept is also defined. Publications written in a language other than English or published before 1996 were excluded. Cultural and social changes over time impact the meaning of concepts and how terms are used (Walker & Avant, 2011). Therefore, it is acceptable to limit the included papers to a specified timeframe. In the context of this analysis, 1996 was a key time with person-centred care gaining increasing prominence in dementia care and Tom Kitwood publishing his influential book on the topic (Kitwood, 1997). The search results confirm that this was an appropriate exclusion criterion with ‘meaningful activity’ being a relatively recent concept, with few relevant papers returned from the earlier years within the search timeframe. To ensure a broad understanding of ‘meaningful activity’, quality assessment was not used to limit study selection beyond these criteria. The focus of this concept analysis is on ‘meaningful activity’ for older adults with dementia. In line with Walker and Avant’s approach to concept analysis, literature relevant to adults more generally was included, but with consideration for application to people with dementia. There are thought to be similarities between ‘meaningful activity’ for this group compared to adults without dementia (Phinney et al., 2007), so inclusion of the additional literature provided a richer understanding of the concept.

294

Analysis Initially, the title and abstracts of papers returned in the search were read for eligibility followed by an assessment of the remaining papers based on reading the full text. Each paper meeting the eligibility criteria and included in the review was again read in full. An inductive approach was taken to synthesise and analyse findings and study conclusions under the categories of attributes, antecedents, consequences and empirical referents of the concept. Model and additional cases were constructed based on the literature, discussions with colleagues experienced in the care of older adults and the author’s research experience to illustrate the concept and its defining attributes. Ethical approval was not required for this study.

Results Term Definitions

To understand ‘meaningful activity’ as a concept, it is useful to consider the meaning of each word. ‘Meaningful’ has been defined as “full of meaning, significant; having real impact, substantial” ("Macquarie Dictionary," 2016) or “serious, important or worthwhile” ("Oxford Dictionary," 2016). While these definitions contribute to understanding ‘meaningful activity’, it is unclear in what sense a ‘meaningful activity’ will have importance or what it will have an impact upon. According to the Macquarie Dictionary, ‘activity’ is:

1) state of action; doing; 2) the quality of acting promptly; energy; 3) a specific deed or action; sphere of action (social activities); 4) an exercise of energy or force; an active movement or operation; 5) liveliness; agility ("Macquarie Dictionary," 2016).

The Oxford Dictionary also includes “a thing that a person does or has done; a recreational pursuit or a pastime” ("Oxford Dictionary," 2016). The term ‘meaningful activity’ has been defined in its entirety by the Concise Oxford Dictionary of Archaeology as:

human action which is carried out for definite reasons, and with specific purposes in mind. The vast bulk of human behaviour is composed of meaningful activities, this being one of the main characteristics which separates human conduct from the movements, objects and events of the natural world (Darvill, 2009).

This definition suggests that ’meaningful activities’ are purposeful but makes no reference to the value of the activity being significant, important or worthwhile as suggested by the above definitions of ‘meaningful’. In isolation, dictionary definitions are inadequate to understand uses and meanings of ‘meaningful activity’ in the context of health and care.

Papers Included for Review

The literature search identified 29 relevant papers for review (Figure 1).

295

Figure 1: PRISMA Flow Diagram

Records identified through database searching (n = 2502)

Incl

uded

El

igib

ility

Id

entif

icat

ion

Records after duplicates removed (n = 850)

Abstracts reviewed for eligibility (n = 110)

Records excluded based on abstract review

(n = 78) Full-text articles assessed for

eligibility (n = 32) Full-text articles excluded

(n = 3) No definition (n=2) Thesis with published papers

from the study already included (n=1)

Studies included in qualitative synthesis (n = 29)

Records excluded based on title review

(n = 740)

296

The ‘meaningful activity’ concept has been explored in several populations and contexts including the long-term unemployed (Ball & Orford, 2002), refugees (Bishop & Purcell, 2013), people with serious mental illness (Carless & Douglas, 2008) and older adults with or without dementia, living in the community or residential aged care facilities (RACFs) (Harmer & Orrell, 2008; Kuosa et al., 2015; Palacios-Cena et al., 2016; Phinney et al., 2007). These studies emanated from the fields of occupational therapy, nursing, psychology and gerontology. Of the 29 papers, 16 focused on older adults, including 10 focusing specifically on older adults with dementia. Papers concerned with ‘meaningful activity’ for older adults covered a range of relevant settings including the community, day respite centres and RACFs.

Defining Attributes

Identifying a group of attributes that are commonly linked to a concept and can act as criteria to recognise its occurrence is the heart of the concept analysis process (Walker & Avant, 2011). A review of the literature revealed five key attributes that make an activity meaningful: enjoyable; suited to the individual; related to personally relevant goals; engaging and; expresses and reinforces identity. The attributes were drawn from the ‘meaningful activity’ definitions included in the reviewed papers, contents of ‘meaningful activity’ tools, qualitative reports by study participants and conclusions of the authors of the reviewed papers. Enjoyable Activities are made meaningful through feelings of enjoyment and pleasure (Eakman, 2012, 2013; Eakman, Carlson, & Clark, 2010a; Kuosa et al., 2015; Vernooij-Dassen, 2007). Enjoyment can be experienced during activity participation (Nyman & Szymczynska, 2016; Roland & Chappell, 2015), when looking forward to an activity (Roland & Chappell, 2015) or enjoyment of the outcome of an activity (Bishop & Purcell, 2013). Activities may be enjoyed for various reasons such as being a hobby (Bishop & Purcell, 2013), a means of relaxation (Bishop & Purcell, 2013; Han et al., 2016a) or a connection to personal identity (Carless, 2008; Han et al., 2016a; Milte et al., 2016). In a study examining ‘meaningful activity’ in RACFs, people with dementia as well as care staff commonly identified enjoyment as a measure for whether an activity was meaningful (Harmer & Orrell, 2008). Suited to Individual Skills, Abilities and Preferences Activities that are suited to the abilities of individuals enable participation (Conti et al., 2008), contributing to a sense of competence and autonomy (Eakman, 2011, 2013) and facilitating enjoyment of those activities (Edvardsson, Fetherstonhaugh, & Nay, 2010; Han et al., 2016a; Harmer & Orrell, 2008; Phinney et al., 2007). For example, a person with moderate dementia may not follow a group conversation but may be able to walk in the garden. Therefore, this person may experience the walk as a more ‘meaningful activity’ as it is suited to their cognitive and physical abilities (Phinney et al., 2007). The ability to participate in an activity can be seen as evidence that it is suitable (Harmer & Orrell, 2008) while signs of frustration and confusion are often perceived as evidence that an activity is unsuitable (Roland & Chappell, 2015). A person with declining abilities may seem reluctant to participate in an activity that was previously meaningful to them (Harmer & Orrell, 2008). However, adapting an activity or providing support to suit current needs and abilities can ease fears of failure and enable the person to cope with their health-related losses while continuing to find meaning in the activity (Harmer & Orrell, 2008; Nyman & Szymczynska, 2016).

297

Despite the need for individualised activities, group-based activities centred around common interests can be meaningful particularly if they are adapted to individual abilities within the group (Han et al., 2016a). Participation alongside others can foster a sense of belonging and may be preferred over individual activities by some people (Han et al., 2016a). This will be partly dependent on individual personality traits such as extroversion (Palacios-Cena et al., 2016; Roland & Chappell, 2015; Smith, Kolanowski, Buettner, & Buckwalter, 2009). Related to Personally Relevant Goals For an activity to be meaningful an individual needs to have a reason for participating in it (Westbroek, Klaassen, Bulte, & Pilot, 2010). It must be personally fulfilling and allow the individual to pursue and achieve personally relevant goals (Eakman, 2013; Eakman et al., 2010b; Goldberg et al., 2002). This can foster a sense of self-worth (Bryant, Corbett, & Kutner, 2001; Han et al., 2016a; Roland & Chappell, 2015), competence (Bryant et al., 2001; Eakman et al., 2010a), accomplishment (Bishop & Purcell, 2013; Eakman et al., 2010a), control (Conti et al., 2008), satisfaction (Bishop & Purcell, 2013) and feeling valued by others (Bryant et al., 2001; Eakman, 2012; Eakman et al., 2010a, 2010b; Han et al., 2016a; Roland & Chappell, 2015). For example, gardening was perceived as a ‘meaningful activity’ for a group of refugees resettling in the UK as the vegetables they grew were a tangible reminder to them of their achievement (Bishop & Purcell, 2013). Similarly, a desire to be involved in purposeful activities is felt acutely by older adults. RACF residents report a desire to undertake activities that allow them to assume some responsibility or role and contribute to those around them (Edvardsson et al., 2010; Han et al., 2016a; Harmer & Orrell, 2008; Kuosa et al., 2015; Palacios-Cena et al., 2016). Activities often take place within a social context and these social connections and interactions can give the activity purpose through experiences of reciprocity and equality (Conti et al., 2008; Kuosa et al., 2015). For some, belief that participation in an activity will be beneficial for their health can give the activity meaning. For example, a case study involving a person with serious mental illness revealed that running was perceived as a ‘meaningful activity’ because it could improve fitness and help him manage his mental illness (Carless, 2008). Similarly, the staff and family carers of people with dementia suggest that activities that allow them to use and maintain their functional abilities are meaningful to them (Harmer & Orrell, 2008; Roland & Chappell, 2015). However, in the papers included in this review, older adults themselves emphasised the value of activities that address their psychological and relational needs, not benefits to their physical health. Engaging Engaging is a term often used when discussing ‘meaningful activity’. In a study investigating ‘meaningful activity’ for long-term unemployed adults, activities that were perceived as meaningful were simply equated to being engaging (Ball & Orford, 2002). Activities that are engaging have also been described as interesting (Phinney et al., 2007). Harmer and Orrell (2008) suggest that pure engagement entails deep involvement in the activity, implying that engagement requires more than simply being physically present during an activity. In one study, family members of RACF residents with dementia suggested that for activities to be engaging they need to be at a level of difficulty that requires the individual to concentrate on what they are doing but without being unachievable (Milte et al., 2016). An example of an activity for RACF residents that is not typically considered meaningful is falling asleep in front of the television (Morley, Philpot, Gill, & Berg-Weger, 2014). This lack of attention suggests that in that case the activity is not engaging.

298

Expresses and Reinforces Identity Expresses and Reinforces Identity An individual’s work is thought to be meaningful if it is tied to their identity or they somehow express themselves in that work (Adams, 2003). Activities can also reflect something about the individual or their values (Eakman, 2012; Eakman et al., 2010a, 2010b). The literature on ‘meaningful activity’ for people with serious mental illness focuses on this attribute. In that context, withdrawal from exercise and sport because of mental illness can result in a loss of self for people with an athletic identity and reintroducing exercise and sport into their lifestyle can restore a sense of identity (Carless, 2008; Carless & Douglas, 2008). Identity can also be linked to occupational roles and roles within family and community (Mansbach et al., 2017; Roland & Chappell, 2015). It has been suggested that for older adults, identity related to social roles such as parent, spouse and homemaker is particularly important for the meaning of activities (Bryant et al., 2001). A sense of shared identity can also be expressed by participating in an activity as a group, such as a family (Han et al., 2016a). Involvement in ‘meaningful activities’ that express identity gives people with dementia a sense of continuity and normality in their life despite other life changes and declining health (Kuosa et al., 2015; Phinney et al., 2007; Roland & Chappell, 2015). Family carers of people with dementia living in the community perceived the maintenance of a sense of identity through activity as important (Roland & Chappell, 2015).

Model and Additional Cases

The following cases were developed by the authors to illustrate the ‘meaningful activity’ concept (Table 1). The Model case is an example of the concept which illustrates each of the defining attributes while the additional cases help to clarify the concept by clearly illustrating what it is not (Walker & Avant, 2011).

299

Table 1: Model and additional cases of ‘meaningful activity’ Type Case Model Case An example of the concept which illustrates each of the defining attributes.

John is a 75-year-old resident of an RACF. Before he retired, John was a local truck driver. It was a job he enjoyed because of the opportunity to meet and talk to different people throughout the day. John now gets up early every morning and delivers the newspapers to individual residents’ rooms. The early mornings don’t bother him as he’s used to it from years of working early mornings. Lately John has started forgetting which newspaper each resident likes to read so the office staff print a list with each residents’ name and their preference. This enables him to continue in this role. John enjoys talking with the other residents as he delivers the newspapers. John rarely misses or fails to complete a delivery and he wants to continue doing the deliveries for as long as he is physically able to as he likes to feel useful.

Borderline Case An example of the concept which illustrates most but not all the defining attributes.

Joan is an 83-year-old woman who lives alone in her own home and was recently diagnosed with dementia. Joan was a committed member of a church a few suburbs away from her home. As her dementia progressed Joan stopped driving so could no longer attend her old church. Joan now attends her neighbours’ church. Attending church has always been important to Joan and given her a sense of purpose. Joan feels she can contribute to this church by handing out the hymn books. However, she doesn’t enjoy going to her neighbours’ church as she is finding it hard to make new friends. Joan often gets distracted during the service.

Related Cases An example depicting how the concept fits into a network of related concepts, connected to the concept being analysed but not containing all the defining attributes.

Productive engagement is a concept related to ‘meaningful activity’ but with some key differences illustrated in this case. Peter is a 77-year-old man with dementia who recently moved into a retirement village. Every morning he keeps busy by tidying his apartment. Peter regularly reads the newspaper to a neighbour who has impaired vision. Peter feels it is his way of contributing to his care. Peter also attends the local church service to maintain his social connections and sense of spirituality. He doesn’t find these activities particularly enjoyable; he would prefer to spend time either reading novels or walking in the garden. However, Peter sees reading and walking as a luxury, even a waste of time. He wants to continue doing the other activities for as long as he is physically able to as they allow him to contribute to others and use his time productively.

Contrary Case An example that does not contain any of the defining attributes.

Mary is an 80-year-old woman with dementia who lives in an RACF. Each week Mary’s daughter brings in a few library books. She usually brings fiction which Mary doesn’t find very interesting. Mary would prefer to read about history. Due to her deteriorating vision, Mary struggles to read them. She often sleeps in her chair or listens to the activity in the corridor as she feels she has nothing useful to do.

300

Antecedents and Consequences

Antecedents associated with ‘meaningful activity’ have been reported in the literature in relation to individual and enabling factors. For individuals, a sense of role identity will contribute to what activities are found to be meaningful (A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007). For some people with dementia articulating personal roles, interests and values may be difficult, making carer skills to identify these vital to ensure that the activities offered are suitable (Harmer & Orrell, 2008; Morley et al., 2014). Support from family or staff carers may enable participation in ‘meaningful activity’ for those who struggle to initiate activity (Harmer & Orrell, 2008; Roland & Chappell, 2015). As discussed earlier, activities must be appropriate for individual physical and cognitive abilities to be meaningful. Therefore, adequate physical and cognitive abilities and/or adaptive strategies to account for impairments are also antecedents of ‘meaningful activity’ (Ciro & Smith, 2015; A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015; Smith et al., 2009). People with dementia may also be enabled to participate in ‘meaningful activity’ when their surroundings, objects and activities are familiar to them (Gori, Pientini, & Vespa, 2001; A. Han et al., 2016; Kuosa et al., 2015; Milte et al., 2016; Phinney et al., 2007). Opportunity factors also contribute to involvement in ‘meaningful activity’. The literature documents the need for availability of activities (Harmer & Orrell, 2008; Palacios-Cena et al., 2016; Phinney et al., 2007) and certain resources to allow participation. Required resources can vary according to types of activities and the support needs of individuals but may include financial resources (Ciro & Smith, 2015; Palacios-Cena et al., 2016), transport to and from the activity (Ciro & Smith, 2015) and adequate staffing for those conducted in health or aged care settings (Harmer & Orrell, 2008). One of the main consequences of participation in ‘meaningful activity’ discussed in the literature is the fulfilment of psychological needs (Eakman, 2013; Goldberg et al., 2002). This was emphasized by Ciro and Smith (2015, p11385) who described ‘meaningful activities’ as- “the activities that are so important, that if you could not do them, it would affect your happiness”. Some other psychological needs that participation in ‘meaningful activity’ can address are a sense of autonomy (Ball & Orford, 2002; Nyman & Szymczynska, 2016; Palacios-Cena et al., 2016), self-efficacy (Ball & Orford, 2002; Goldberg et al., 2002; Roland & Chappell, 2015), satisfaction (A. Han et al., 2016; Nyman & Szymczynska, 2016), connection to others (A. Han et al., 2016), feeling valued (Goldberg et al., 2002; Harmer & Orrell, 2008) and a sense of purpose (Eakman, 2013; Goldberg et al., 2002; Gori et al., 2001; Nyman & Szymczynska, 2016; Palacios-Cena et al., 2016; Phinney et al., 2007). For people with dementia, involvement in ‘meaningful activity’ may also provide a sense of continuity and normality in life despite changes and declining health (Edvardsson et al., 2010; A. Han et al., 2016; Milte et al., 2016; Phinney et al., 2007; Roland & Chappell, 2015). Participating in ‘meaningful activity’ suited to individual abilities can provide a sense of achievement and promote self-esteem (Edvardsson et al., 2010). A ‘meaningful activity’ provides something to look forward to and results in increased participation (A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015; Smith et al., 2009). Associated decreases in depression, agitation and dementia-related behaviours have also been seen (Gori et al., 2001; Phinney et al., 2007; Smith et al., 2009). Participation in ‘meaningful activity’ is thought to improve physical health but may also result in an increase in falls among older adults who are more active (Palacios-Cena et al., 2016; Phinney et al., 2007; Roland & Chappell, 2015). Overall, it has been suggested that participation in ‘meaningful activity’ can potentially result

301

in improved quality of life (A. Han et al., 2016; Harmer & Orrell, 2008; Phinney et al., 2007; Roland & Chappell, 2015).

Empirical Referents

Empirical referents relate directly to the defining attributes and identify how the presence of the concept can be recognised and measured in practice (Walker & Avant, 2011). The empirical referents for ‘meaningful activity’ for older adults with dementia include:

Enjoyment of the activity either in anticipation of participation, while participating in the activity or enjoyment of the outcome. Enjoyment can be expressed verbally or through facial and bodily expressions such as smiling, laughing, touching, singing or an open arm gesture (Albert, Del Castillo-Castaneda, Sano, & Jacobs, 1996) and has recently been quantified using Csikszentmihalyi’s (1993) ‘flow state’ concept (Payne et al., 2011).

The individual has the physical and cognitive abilities to fully participate in the activity or is enabled to participate with the support of a carer. In this case, the carer understands the individual’s abilities and can identify appropriate activities, adapt activities and provide the required level of assistance to ensure participation is a positive experience.

Participation in the activity allows the individual to work towards achieving a personally relevant goal.

An activity that is engaging holds the attention of the individual as they participate in it and they are not easily distracted. A deep level of engagement can be difficult to measure (Csikszentmihalyi, 1993). Engagement in activities has previously been measured in people with dementia using primarily temporal and/or attention to task parameters, such as time spent on task, level of attention, and including the intensity of engagement, e.g. dozing, not engaged, passively engaged and actively engaged (Cohen-Mansfield, Dakheel-Ali, & Marx, 2009; Kolanowski et al., 2006). Various dimensions of engagement that can be readily observed and measured in people with dementia include emotional, verbal, visual, behavioural and collective engagement as well as signs of agitation (Jones, Sung, & Moyle, 2015).

The activity is closely related to an aspect of the individual’s identity.

The empirical referents of ‘meaningful activity’ can be recognized and measured by the self-report of the individual participating in the activity or observation and assessment by others.

Definition and Conceptual Model of ‘Meaningful Activity’

Using the defining attributes identified in the existing literature ‘meaningful activity’ can be conceptualised as: those activities which engage the individual and provide a sense of enjoyment. Specific activities will be different for each individual as they will be suited to their unique interests, abilities and goals and express an aspect of their identity. A Meaningful Activity for Older Adults Living with Dementia Model is proposed below, illustrating the defining attributes, antecedents and consequences identified for this concept

302

(Figure 2). The central part of the model presents the five defining attributes of ‘meaningful activity’ identified from the literature using the specific term. The attributes are displayed as a series of overlapping circles and the space where all five circles overlap represents an activity where all five attributes are present, a paradigmatic example (Walker & Avant, 2011) of a ‘meaningful activity’. The first box in the model displays the antecedents required for people living with dementia to participate in ‘meaningful activities’ as identified in the literature. A range of factors related to the individual as well as opportunities for activity are mediated by adaptation and enablement. Lastly, the model presents a range of positive consequences of participating in ‘meaningful activity’ as drawn from the literature, including increased activity participation and improved health. Figure 2: ‘Meaningful Activity’ for Older Adults Living with Dementia Model

Discussion

The aims of this concept analysis were to explore the attributes of ‘meaningful activity’ in relation to people with dementia, develop a definition of the concept and propose a conceptual model depicting the factors that influence the ability of people with dementia to participate in ‘meaningful activity’ and potential outcomes of that participation. The review of literature explicitly using the term ‘meaningful activity’ identified five key elements of ‘meaningful activity’: enjoyable, suited to the individual’s interests and abilities, related to a personally relevant goal, engaging and reinforces or expresses an aspect of an individual’s identity. As

Antecedents

Attributes

Enjoyable


Goal-relatedEngaging

Linked to identity

Consequences

Sense of identity Physical and cognitive

Individual Factors Adaptation Enablement Familiarity

Activity availability Resources

Opportunity Factors

Increased activity participation

Improved Health

Psychosocial and physical Quality of life

303

illustrated in the model, that literature suggests that a range of factors contribute to participation in ‘meaningful activity’. These include a sense of identity, adequate physical and cognitive abilities, the availability of activities and resources. For people with dementia, adaptation, enablement and familiarity facilitate participation. Through participation in ‘meaningful activity’, people with dementia may experience improved health and quality of life. The concept analysis built on research explicitly using the term ‘meaningful activity’. Twenty-nine studies were located that used the term with reference to a variety of populations and contexts, with people with dementia being the most frequently studied using the term. Despite this broad use of the term in research, the lack of a clear and consistent definition of ‘meaningful activity’ was a conspicuous gap in the literature, hindering knowledge growth in the field (Conti et al., 2008; Eakman, 2011; Mansbach et al., 2017). This concept analysis has drawn on and synthesised the literature using the term ‘meaningful activity’ to develop a more comprehensive understanding of what makes activities meaningful for older adults with dementia. Our understanding of the concept ‘meaningful activity’ can be developed further by linking it to literature in the field of dementia that, while not explicitly using the term, nevertheless examines elements of its definition, such as ‘tailored’, ‘individualised’ or ‘preferred’ activities (Table 2). The literature on preferred activities has identified similarities between current preferred activities and past preferred activities of people with dementia (Cohen-Mansfield et al., 2017). This may be related to enjoying similar activities or the link to past and ongoing identity that activities can provide. For example, gender roles and identity may influence preferred and ‘meaningful activities’ as cooking has been reported as a preferred activity more often for women than men with dementia while physical games were reported as a preferred activity more often for men (Cohen-Mansfield et al., 2017). Tailored or individualised activities for people with dementia typically focus on ensuring that activities are either suited to the abilities or interests of the person or both abilities and interests (Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al., 2015). While the impact on the meaning of an activity is unclear, individualised activities that align with either a person’s interests or abilities have a positive impact on agitation, other dementia related behaviour changes and affect (Han et al., 2016b). In relation to ‘meaningful activities’ being suited to the person, aligning with their interests may be more important than having the physical or cognitive ability to participate. Activities that were suited to either interests alone or interests and abilities were found to have a greater impact than activities that aligned with abilities only (Han et al., 2016b). The findings of this concept analysis help to place ‘meaningful activity’ within a network of related concepts (Table 2). Activities being ‘tailored’ or ‘individualised’ are important to contribute to the meaning of activities. However, analysis of how ‘meaningful activity’ is used and understood as a complete term indicates that this in only part of ‘meaningful activity’. This concept analysis has identified other aspects that need to be considered when determining activities for individuals. For example, also considering how the activity may be related to a goal for the individual and how participation may allow them to work towards or achieve that goal. Many of the studies exploring tailored or individualised activities for people living with dementia focus on activities that have been prescribed for the individual and involve one-on-one participation (Cohen-Mansfield et al., 2017; Gitlin et al., 2008; Kolanowski et al., 2011). Organised group activities could also be meaningful. While activities need to be suited to the individual’s skills, abilities and preferences the activities do not necessarily need to be actively individualised or tailored for that person for every activity on every occasion.

304

Table 2: ‘Meaningful activity’ and other activity related terms Term describing activity Conceptual definition Qualified by Individualised (Van Haitsma et al., 2015)

Designed for, and provided to, a single person

Content, complexity and pace determined on the basis of abilities and interests.

Tailored (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Mohler et al., 2018)

Prescribed for an individual to address wellbeing and dementia related behaviour changes

Determined on the basis of identified interests and abilities.

Preferred (Cohen-Mansfield et al., 2017)

Selected over other available options and stated by the person as ‘preferred’ or a ‘preference’

Liked or enjoyed more than another activity.

Purposeful (Dementia Australia, 2019)

Resulting in an outcome or product

Not perceived as a waste of time or useless.

Meaningful Having meaning to the person

Determined on the basis of identified interests, abilities, goals and identity. The activity is enjoyed and engaging.

In applying the findings of this concept analysis in the context of the lives of older adults with dementia, the potential stage-specific nature of ‘meaningful activity’ needs to be considered. Research suggests that activity preferences do not change following a diagnosis of dementia with participation in activities, including ‘meaningful activities’, providing a sense of continuity (Phinney et al., 2007). However, the declining abilities associated with progressive dementia mean that the experience of activity participation will inevitably change (Phinney et al., 2007). While a pure example of a ‘meaningful activity’ will contain elements of each of the five defining attributes, it is possible that the importance of each attribute varies across the stages of dementia. In a study involving family carers of people with dementia living in the community, the majority of carers of people with mild dementia reported that activity participation was important for maintaining a sense of identity (Roland & Chappell, 2015). This was less frequently raised by those caring for people with moderate or severe dementia. Family carers focused on the need for activities to be engaging for people with moderate dementia and pleasurable for those with severe dementia. These reports are reflected in activity plans written by occupational therapists for people living with dementia in the community (Regier, Hodgson, & Gitlin, 2017). Goal-related activities were typically planned for those with mild dementia, occasionally for those with moderate dementia and rarely for people with severe dementia. Expectations of engagement also varied by dementia stage with the length of time engaged in the activity declining as dementia progressed. These changes may also follow activity related limitations and challenges for people with dementia associated with changes to living situation such as moving to an RACF (Phinney et al., 2007). The antecedents of ‘meaningful activity’ are also likely to be stage-specific with changing abilities, opportunities and support required. While this concept analysis identified several key elements of ‘meaningful activity’, methods for including these elements in activities for people with dementia are unclear. For example, continuity theory suggests that maintaining consistent activity patterns into older adulthood fosters successful ageing (Atchley, 1999; Conti et al., 2008; Nimrod & Kleiber, 2007). From

305

this perspective, activities an individual found meaningful in the past will continue to have meaning for them as they age (Conti et al., 2008), making it essential to understand the individuals past activity interests. However, it has also been suggested that this may not be the optimal approach, particularly for people with dementia, as insight into their deteriorating abilities may diminish the meaning of previously ‘meaningful activities’ (Conti et al., 2008; Harmer & Orrell, 2008). The approach may also limit activity opportunities for people with dementia (Du Toit et al., 2018). Those with more severe dementia may not recognise the activities as being a source of meaning. This has implications for practice for those who support and enable those with dementia to participate in ‘meaningful activities’. While it is important to consider activities an individual previously found meaningful, opportunities for participation in ‘meaningful activities’ should not be limited to those activities. Many RACFs have activity programs and coordinators as an efficient and cost-effective way to provide activity opportunities for residents (Powers, 2003). Despite this, a lack of ‘meaningful activities’ and feelings of boredom amongst residents are commonly reported in the literature (Edvardsson, Petersson, Sjogren, Lindkvist, & Sandman, 2014; Harmer & Orrell, 2008; Palacios-Cena et al., 2016; Thomas, O'Connell, & Gaskin, 2013). Palacios-Cena et al (2016) suggest that this is because many of the organised activities do not account for individual preferences and needs. These authors found that, across seven RACFs in Spain, the activity programs were targeted at residents with high levels of dependency, leading to frustration for residents with fewer impairments. Therefore, despite the intentions of RACF staff to provide residents with activity opportunities these activities need to be targeted towards the needs of individuals. Importantly, participation in ‘meaningful activity’ may have a greater impact on wellbeing and quality of life than more extensive involvement in activities that are not perceived as meaningful by the individual (Eakman et al., 2010b). This concept analysis has confirmed that ‘meaningful activity’ is highly individual, with older adults emphasising different aspects of what makes an activity meaningful for them compared to what their carers thought they would find meaning in. In particular, older adults focused on the goal of contributing to others through their activity participation while their carers perceived maintenance or improvement in physical health as a key reason for participation. These findings have important implications given the enabling role of staff and family carers in identifying ‘meaningful activity’ for individuals and supporting them to engage in these activities (Harmer & Orrell, 2008; Roland & Chappell, 2015). This role makes it important for carers to seek a deep understanding of activity participation and reasons for participation among individuals (Du Toit et al., 2018; Han et al., 2016a). For example, someone may find painting to be a ‘meaningful activity’ because it is an artistic expression while for someone else it is meaningful as a weekly activity with a friend (Du Toit et al., 2018). Understanding this will help carers identify and promote participation in ‘meaningful activity’.

Limitations

This review of the ‘meaningful activity’ literature has identified several gaps in our current understanding of the concept. As this concept analysis is based on the literature explicitly using the term, these gaps limit the ability of the current analysis to comprehensively guide the planning and provision of ‘meaningful activity’ for this group without further research. The defining attributes identified here suggest a cognitive element to understanding the activity, its link to personal identity and having a reason for participating in it. The relevance of these aspects of the concept of ‘meaningful activity’ for people with severe dementia is unclear. Further research is required to explore what ‘meaningful activity’ means for people with

306

varying levels of dementia severity. The proposed model is also based on the existing ‘meaningful activity’ literature, which is predominantly qualitative. Quantitative studies exploring the effect of other types of tailored or individualised activities have shown decreased expression of BPSD and increased pleasure and alertness in people with dementia as a result of participating in these activities (Gitlin et al., 2008; Gitlin et al., 2009; Kolanowski et al., 2011; Van Haitsma et al., 2015). Quantitative studies reviewed in this concept analysis also show increased alertness and interest, improved QoL and decreased agitation (Conti et al., 2008; Goldberg et al., 2002; Gori et al., 2001). However, these studies use a limited definition of ‘meaningful activity’, not including all of the defining attributes identified in this analysis. Intervention studies are needed to investigate the outcomes of participating in activities that fit the more comprehensive understanding of the characteristics of ‘meaningful activity’ as illustrated in the model. Despite these limitations, this concept analysis provides important insights that contribute to moving discussion and the literature forward in this area.

Conclusions The purpose of this concept analysis was to examine the ‘meaningful activity’ literature to identify the attributes, antecedents and consequences of the concept as they relate to people with dementia. This synthesis of the existing literature on ‘meaningful activity’ has identified the key defining attributes of the concept. A ‘meaningful activity’ is one which is enjoyable and engaging. It is closely linked to an individual’s goals and sense of identity while at the same time being appropriate for their physical and cognitive abilities. Antecedents of ‘meaningful activity’ can relate to the individual, such as their sense of identity and abilities or external factors such as activity opportunities and resources to enable participation. Engagement in ‘meaningful activity’ is thought to contribute positively towards an individual’s psychosocial and physical wellbeing. This concept analysis provides valuable clarification and direction for researchers, policy makers and health professionals interested in researching, planning and delivering person-centred services and care in this growing area. Those involved in supporting and providing care for people with dementia should consider each of the attributes found through this concept analysis when identifying ‘meaningful activities’ for individuals and when encouraging and facilitating participation in them.

Author contributions

Study design: LT, EB; data collection and analysis: LT; interpretation: LT, EB; drafting the manuscript: LT; critical review of the manuscript: EB; final approval: LT, EB

307

References

Adams, M. (2003). Humanistic values. International Journal for Philosophy of Religion, 54(2), 65-76.

Aged Care Quality and Safety Commission. (2018). Guidance and resources for providers to support the Aged Care Quality Standards. Retrieved from https://www.agedcarequality.gov.au/providers/standards

Albert, S., Del Castillo-Castaneda, C., Sano, M., & Jacobs, D. (1996). Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of the American Geriatrics Society, 44, 1342-1347.

Atchley, R. C. (1999). Continuity and adaptation in aging. Creating positive experiences. Baltimore, MD: Johns Hopkins University Press.

Ball, M., & Orford, J. (2002). Meaningful patterns of activity amongst the long-term inner city unemployed: A qualitative study. Journal of Community & Applied Social Psychology, 12(6), 377-396. doi:10.1002/casp.692

Bishop, R., & Purcell, E. (2013). The value of an allotment group for refugees. British Journal of Occupational Therapy, 76(6), 264-269. doi:10.4276/030802213x13706169932824

Boggatz, T. (2015). Quality of life in old age - a concept analysis. Int J Older People Nurs. doi:10.1111/opn.12089

Brooker, D. (2004). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13(3), 215-222. doi:10.1017/s095925980400108x

Bryant, L., Corbett, K., & Kutner, J. (2001). In their own words: A model of healthy aging. Social Science & Medicine, 53(7), 927-941.

Buettner, L., & Fitzsimmons, S. (2003). Activity calendars for older adults with dementia: What you see is not what you get. American Journal of Alzheimer's Disease and Other Dementias, 18(4), 215-226.

Carless, D. (2008). Narrative, identity, and recovery from serious mental illness: A life history of a runner. Qualitative Research in Psychology, 5(4), 233-248. doi:10.1080/14780880701826101

Carless, D., & Douglas, K. (2008). The role of sport and exercise in recovery from serious mental illness: Two case studies. International Journal of Men's Health, 7(2), 137-156.

Ciro, C., & Smith, P. (2015). Improving personal characterization of meaningful activity in adults with chronic conditions living in a low-income housing community. Int J Environ Res Public Health, 12(9), 11379-11395. doi:10.3390/ijerph120911379

Cohen-Mansfield, J., Dakheel-Ali, M., & Marx, M. S. (2009). Engagement in persons with dementia: The concept and its measurement. The American Journal of Geriatric Psychiatry, 17(4), 299-307.

Cohen-Mansfield, J., Gavendo, R., & Blackburn, E. (2017). Activity Preferences of persons with dementia: An examination of reports by formal and informal caregivers. Dementia (London), 1471301217740716. doi:10.1177/1471301217740716

Conti, A., Voelkl, J., & McGuire, F. (2008). Efficacy of meaningful activities in recreation therapy on passive behaviors of older adults with dementia. Annual in Therapeutic Recreation, 16, 91-104.

Csikszentmihalyi, M. (1993). Activity and happiness: Towards a science of occupation. Journal of Occupational Science, 1(1), 38-42. doi:10.1080/14427591.1993.9686377

Darvill, T. (2009). The Concise Oxford Dictionary of Archaeology. 2nd Edition. Retrieved from http://www.oxfordreference.com/view/10.1093/acref/9780199534043.001.0001/acref-9780199534043

308

Dementia Australia. (2019). Purposeful activities for people with dementia: A resource. Retrieved from https://www.dementia.org.au/resources/purposeful-activities-for-people-with-dementia

Du Toit, S. H., Shen, X., & McGrath, M. (2018). Meaningful engagement and person-centered residential dementia care: A critical interpretive synthesis. Scandanavian Journal of Occupational Therapy, 26(5), 343-355.

Eakman, A. (2011). Convergent validity of the Engagement in Meaningful Activities Survey in a college sample. OTJR: Occupation Participation and Health, 31(1), 23-32. doi:10.3928/15394492-20100122-02

Eakman, A. (2012). Measurement characteristics of the Engagement in Meaningful Activities Survey in an age-diverse sample. The American Journal of Occupational Therapy, 66(2), e20-e29. doi:10.5014/ajot.2012.001867

Eakman, A. (2013). Relationships between meaningful activity, basic psychological needs, and meaning in life: Test of the meaningful activity and life meaning model. OTJR: Occupation, Participation and Health, 33(2), 100-109. doi:10.3928/15394492-20130222-02

Eakman, A., Carlson, M., & Clark, F. (2010a). Factor structure, reliability and convergent validity of the Engagement in Meaningful Activities Survey for older adults. OTJR: Occupation Participation and Health, 30(3), 111-121. doi:10.3928/15394492-20090518-01

Eakman, A., Carlson, M., & Clark, F. (2010b). The Meaningful Activity Participation Assessment: A measure of engagement in personally valued activities. The International Journal of Aging and Human Development, 70(4), 299-317.

Edvardsson, D., Fetherstonhaugh, D., & Nay, R. (2010). Promoting a continuation of self and normality: Person-centred care as described by people with dementia, their family members and aged care staff. Journal of Clinical Nursing, 19(19), 2611-2618. doi:10.1111/j.1365-2702.2009.03143.x

Edvardsson, D., Petersson, L., Sjogren, K., Lindkvist, M., & Sandman, P. (2014). Everyday activities for people with dementia in residential aged care: Associations with person-centredness and quality of life. International Journal of Older People Nursing, 9(4), 269-276. doi:10.1111/opn.12030

Edvardsson, D., Varrailhon, P., & Edvardsson, K. (2014). Promoting person-centeredness in long-term care: An exploratory study. Journal of Gerontological Nursing, 40(4), 46-53.

Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. P., & Hauck, W. W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. American Journal of Geriatric Psychiatry, 16(3), 229-239.

Gitlin, L. N., Winter, L., Vause Earland, T., Herge, E. A., Chernett, N. L., Piersol, C. V., & Burke, J. P. (2009). The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptibility and replication potential. The Gerontologist, 49(3), 428-439.

Goldberg, B., Brintnell, E., & Goldberg, J. (2002). The relationship between engagement in meaningful activities and quality of life in persons disabled by mental illness. Occupational Therapy in Mental Health, 18(2), 17-44.

Gori, G., Pientini, S., & Vespa, A. (2001). The selection of meaningful activities as a treatment for day-care in dementia. Arch Gerontol Geriatr, suppl. 7, 207-212.

Han, A., Radel, J., McDowd, J., & Sabata, D. (2016). Perspectives of people with dementia about meaningful activities: A synthesis. American Journal of Alzheimers Disease and Other Dementias, 31(2), 115-123. doi:10.1177/1533317515598857

309

Han, A., Radel, J., McDowd, J. M., & Sabata, D. (2016). The Benefits of Individualized Leisure and Social Activity Interventions for People with Dementia: A Systematic Review. Activities, Adaptation & Aging, 40(3), 219-265. doi:10.1080/01924788.2016.1199516

Harmer, B., & Orrell, M. (2008). What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging and Mental Health, 12(5), 548-558. doi:10.1080/13607860802343019

Hermansson, E., & Martensson, L. (2011). Empowerment in the midwifery context--a concept analysis. Midwifery, 27(6), 811-816. doi:10.1016/j.midw.2010.08.005

Heung, R. S. M., & Yuen Loke, A. J. T. (2012). Leisure and older people: A concept analysis, and implications for nursing. Aging and Society: An Interdisciplinary Journal, 1(2), 55-67.

Hubbard, G., Downs, M., & Tester, S. (2003). Including people with dementia in research: Challenges and strategies. Aging and Mental Health, 7(5), 351-362.

Jacelon, C. S., Connelly, T. W., Brown, R., Proulx, K., & Vo, T. (2004). A concept analysis of dignity for older adults. Journal of Advanced Nursing, 48(1), 76-83.

Jones, C., Sung, B., & Moyle, W. (2015). Assessing engagement in people with dementia: a new approach to assessment using video analysis. Arch Psychiatr Nurs, 29(6), 377-382. doi:10.1016/j.apnu.2015.06.019

Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.

Kolanowski, A., Buettner, L., Litaker, M., & Yu, F. (2006). Factors that relate to activity engagement in nursing home residents. American Journal of Alzheimer's Disease and Other Dementias, 21(1), 15-22.

Kolanowski, A., Litaker, M., Buettner, L., Moeller, J., & Costa, P. T., Jr. (2011). A randomized clinical trial of theory-based activities for the behavioral symptoms of dementia in nursing home residents. J Am Geriatr Soc, 59(6), 1032-1041. doi:10.1111/j.1532-5415.2011.03449.x

Kuosa, K., Elstad, I., & Normann, H. (2015). Continuity and change in life engagement among people with dementia. Journal of Holistic Nursing, 33(3), 205-227.

Macquarie Dictionary. (2016). Retrieved from https://www-macquariedictionary-com-au Mansbach, W., Mace, R., Clark, K., & Firth, I. (2017). Meaningful activity for long-term care

residents with dementia: A comparison of activities and raters. Gerontologist, 57(3), 461-468. doi:10.1093/geront/gnv694

McCormack, B. (2003). A conceptual framework for person-centred practice with older people. International Journal of Nursing Practice, 9, 202-209.

McCormack, B. (2004). Person-centredness in gerontological nursing: An overview of the literature. International Journal of Older People Nursing, 13(3a), 31-38.

Milte, R., Shulver, W., Killington, M., Bradley, C., Ratcliffe, J., & Crotty, M. (2016). Quality in residential care from the perspective of people living with dementia: The importance of personhood. Arch Gerontol Geriatr, 63, 9-17. doi:10.1016/j.archger.2015.11.007

Mohler, R., Renom, A., Renom, H., & Meyer, G. (2018). Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care. Cochrane Database Syst Rev, 2, CD009812. doi:10.1002/14651858.CD009812.pub2

Morgan, S., & Yoder, L. H. (2012). A concept analysis of person-centered care. Journal of Holistic Nursing, 30(1), 6-15.

Morley, J., Philpot, C., Gill, D., & Berg-Weger, M. (2014). Meaningful activities in the nursing home. Journal of the American Medical Directors Association, 15(2), 79-81. doi:10.1016/j.jamda.2013.11.022

310

Nimrod, G., & Kleiber, D. A. (2007). Reconsidering change and continuity in later life: Toward an innovation theory of successful aging. International Journal of Aging and Human Development, 65(1), 1-22. doi:10.2190/Q4G5-7176-51Q2-3754

Nolan, M., Davies, S., Brown, J., Keady, J., & Nolan, J. (2004). Beyond person-centred care: A new vision for gerontological nursing. Journal of Clinical Nursing, 13(3a), 45-53. doi:10.1111/j.1365-2702.2004.00926.x

Nyman, S., & Szymczynska, P. (2016). Meaningful activities for improving the wellbeing of people with dementia: Beyond mere pleasure to meeting fundamental psychological needs. Perspectives in Public Health, 136(2), 99-107. doi:10.1177/1757913915626193

O'Shea, E., Timmons, S., O'Shea, E., Fox, S., & Irving, K. (2017). Respite in dementia: An evolutionary concept analysis. Dementia (London).

Oxford Dictionary. (2016). Retrieved from http://www.oxforddictionaries.com/ Palacios-Cena, D., Gomez-Calero, C., Cachon-Perez, J., Velarde-Garcia, J. F., Martinez-

Piedrola, R., & Perez-De-Heredia, M. (2016). Is the experience of meaningful activities understood in nursing homes? A qualitative study. Geriatric Nursing, 37(2), 110-115. doi:10.1016/j.gerinurse.2015.10.015

Payne, B. R., Jackson, J. J., Noh, S. R., & Stine-Morrow, E. A. (2011). In the zone: flow state and cognition in older adults. Psychology and Aging, 26(3), 738-743. doi:10.1037/a0022359

Phinney, A., Chaudhury, H., & O'Connor, D. (2007). Doing as much as I can do: The meaning of activity for people with dementia. Aging and Mental Health, 11(4), 384-393. doi:10.1080/13607860601086470

Powers, B. A. (2003). Nursing home ethics: Everyday issues affecting residents with dementia. New York: Springer Pub.

Regier, N. G., Hodgson, N. A., & Gitlin, L. N. (2017). Characteristics of Activities for Persons With Dementia at the Mild, Moderate, and Severe Stages. Gerontologist, 57(5), 987-997. doi:10.1093/geront/gnw133

Roland, K., & Chappell, N. (2015). Meaningful activity for persons with dementia: Family caregiver perspectives. American Journal of Alzheimer's Disease and Other Dementias, 30(6), 559-568. doi:10.1177/1533317515576389

Slater, L. (2006). Person-centredness: A concept analysis. Contemporary Nurse, 23(1), 135-144.

Smith, M., Kolanowski, A., Buettner, L., & Buckwalter, K. (2009). Beyond bingo: Meaningful activities for persons with dementia in nursing homes. Annals of Long Term Care, 17(7), 22-30.

Thanakwang, K., & Isaramalai, S. (2013). Productive engagement in older adults: A concept analysis. Nursing and Health Sciences, 15(1), 124-130. doi:10.1111/nhs.12015

Thomas, J., O'Connell, B., & Gaskin, C. (2013). Residents' perceptions and experiences of social interaction and participation in leisure activities in residential aged care. Contemporary Nurse, 45(2), 244-254.

Van Haitsma, K. S., Curyto, K., Abbott, K. M., Towsley, G. L., Spector, A., & Kleban, M. (2015). A randomized controlled trial for an individualized positive psychosocial intervention for the affective and behavioral symptoms of dementia in nursing home residents. J Gerontol B Psychol Sci Soc Sci, 70(1), 35-45. doi:10.1093/geronb/gbt102

Vernooij-Dassen, M. (2007). Meaningful activities for people with dementia. Aging and Mental Health, 11(4), 359-360. doi:10.1080/13607860701498443

Walker, L., & Avant, K. (2011). Strategies for theory construction in nursing (5th ed.). Upper Saddle River, NJ: Pearson Education, Inc.

311

Westbroek, H., Klaassen, K., Bulte, A., & Pilot, A. (2010). Providing students with a sense of purpose by adapting a professional practice. International Journal of Science Education, 32(5), 603-627. doi:10.1080/09500690902721699

Windle, G. (2010). What is resilience? A review and concept analysis. Reviews in Clinical Gerontology, 21(2), 152-169.

312

Appendix 2

HREC Approval

314

Appendix 3

Participant information sheets and consent forms

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Resident –

Enhancing quality of life for aged care facility residents with dementia: The role of meaningful activities

QUT Ethics Approval Number 1700000521 RESEARCH TEAM Principal Researcher: Mrs Laura Tierney PhD student Associate Researchers:

Prof Elizabeth Beattie Principal Supervisor

Dr Elaine Fielding Associate Supervisor Dr Margaret MacAndrew Associate Supervisor Faculty of Health, Queensland University of Technology (QUT) Dr Kathleen Doherty External Supervisor Faculty of Health, University of Tasmania

DESCRIPTION This research project is being undertaken as part of a PhD study by Laura Tierney. The purpose of this research project is to understand what makes activities meaningful to you. You are invited to participate in this research project because we are interested in hearing about what kinds of activities are important to you. PARTICIPATION A researcher will come to visit you. That person will ask you some questions about how you feel and what you do during the day. This will take about 1 hour of your time. We would also like to see what a typical day is like for you so a researcher may observe your activities for a few five-minute periods. The researcher will also talk to one member of your family who visits you frequently. We will also record information from your medical record such as your age and how long you have lived here. All your responses and information are coded with a number so they cannot be linked to you. Your participation in this research project is entirely voluntary. If you do agree to participate you can choose to stop at any time without comment or penalty. You just need to tell us that you no longer want to take part. Your decision to participate or not participate will in no way impact your current or future relationship with QUT, the University of Tasmania or where you live. EXPECTED BENEFITS It is expected that this research project may not benefit you directly. However, the information collected may benefit the lives of other people living in residential aged care.

315

RISKS There are some minor risks associated with your participation in this research project. You might get tired during the interview. You might get upset when answering the questions. You can ask for rest breaks if you need them or to stop the interview if you don’t want to continue. If you do become upset, you may contact the Alzheimer’s Australia National Dementia Hotline on 1800 100 500 for private and confidential counselling. An independent counselling service will also be available through the facility if you need their support. You can contact them by calling [insert details]. PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. Any information collected as part of this research project will be stored securely. CONSENT TO PARTICIPATE If you agree to participate in this research, please sign the consent form given to you by the researcher. QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT If you have any questions or require further information, please contact one of the listed researchers: Laura Tierney [email protected] 03 6226 4780(located in Tasmania) Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland) CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.

316

CONSENT FORM FOR QUT RESEARCH PROJECT –Resident –


QUT Ethics Approval Number 1700000521 RESEARCH TEAM Laura Tierney [email protected] 03 6226 4780 Elizabeth Beattie [email protected] 07 3138 3389 Elaine Fielding [email protected] 07 3138 5772 Margaret MacAndrew [email protected] 07 3138 5956 Kathleen Doherty [email protected] 03 6226 4752 STATEMENT OF CONSENT By signing below, you are indicating that you:

Have read and understood the information document regarding this research project.

Have had any questions answered to your satisfaction.

Understand that if you have any additional questions you can contact the research team.

Understand that you are free to withdraw without comment or penalty.

Understand that if you have concerns about the ethical conduct of the project you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].

Agree that your medical record can be accessed for anonymous information.

Agree to participate in the research project. Please tick the relevant box below:

I agree for the interview to be audio recorded. I do not agree for the interview to be audio recorded.

Name

Signature

Date PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.

317

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Family Member Interview and Proxy Consent for Resident –





DESCRIPTION This research project is being undertaken as part of a PhD study by Laura Tierney.

The purpose of this research project is to understand ‘meaningful activity’ in the context of the lives of people with dementia in residential aged care facilities. The research will explore what makes activities meaningful for residents and the potential impact of participation in these activities on resident quality of life from the perspective of residents, their family members and facility staff. Your input will also help us understand what assists or prevents participation in meaningful activities by your family member.

You have been identified as the authorised representative who makes decisions with and/or on behalf of your family member. You are invited to provide permission for your family member to participate in this research project if he/she is unable to provide their own consent. You are also invited to participate in this research project because you are a close family member of a resident with dementia. PARTICIPATION The research project entails collection of information about your family member in the following manner. Your family member will be invited to participate in an interview to explore their perspective on what makes activities meaningful to them.

Questions will include:

Tell me about some of the things you do during the day.

What makes an activity meaningful to you?

They will also be asked some questions about how they rate their quality of life and various aspects of their health. This will take a maximum of 60 minutes of their time. Your family member’s medical record will also be reviewed to gather demographic information such as their age, gender, length of stay and care level. We will also talk

318

to a staff member who regularly cares for your family member to gather information about their health and the care they receive.

We may also ask you if we can observe your family member for a series of eight brief five minute periods over the course of one week. Your family member may be chosen to be observed with your permission. These observations will be unobtrusive with the researcher not interfering with your family members’ usual activities or care or observing during personal care. All information collected about your family member will be coded with a number, meaning no information can be matched to their name.

Your participation will involve an audio recorded interview at your facility or over the phone that will take approximately 30 minutes of your time and focus on what you think makes activities meaningful to your family member.


What do you think makes activities meaningful to your family member?

What do you think helps your family member to participate in these kinds of activities? Your participation and your family members’ participation in this research project is entirely voluntary. If you do agree to participate you can withdraw from the research project without comment or penalty at any time. If you withdraw within 2 weeks after your interview, on request any identifiable information already obtained from you will be destroyed. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT, the University of Tasmania or the aged care facility in which your family member resides.

EXPECTED BENEFITS

It is expected that this research project will not benefit you directly. However, it may benefit aged care facility residents as a better understanding of meaningful activity will help residential aged care facilities provide opportunities and support for residents with dementia to participate in these activities.

RISKS

There are no risks beyond normal day-to-day living associated with your participation in this research project.

There are minimal risks associated with your family members’ participation in this research project. These include fatigue caused by the duration of interviews and emotional distress associated with interview questions. To minimise and manage these risks, the scheduling of the interview will be flexible to suit your family member’s needs and breaks during the interview will be offered if necessary.

QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT research projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant.

319

Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support.

The Alzheimer’s Australia National Dementia Helpline is a free confidential information and support service for anyone who has been diagnosed with dementia, knows someone with dementia, works with people with dementia or someone who simply wants to know more. The Helpline operates during business hours on 1800 100 500. For participants in Tasmania, the Alzheimer’s Australia Tasmania Dementia and Memory Community Centre can provide support on 03 6279 1100. Alternatively, an independent counselling service will also be available through the facility should you require further support. You can contact this service via the following: [insert details] PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. As the research project involves an audio recording:

You will have the opportunity to verify your comments and responses prior to final inclusion.

The audio recording will be destroyed 5 years after the last publication. The audio recording will not be used for any other purpose. Only the named researchers will have access to the audio recording. It is possible to participate in the research project without being audio recorded.

Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy. CONSENT TO PARTICIPATE We would like to ask you to sign a written consent form (enclosed) to confirm your agreement to participate. QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT If you have any questions or require further information, please contact one of the listed researchers: Laura Tierney [email protected] 03 6226 4780 (located in Tasmania) Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland) CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.


320

CONSENT FORM FOR QUT RESEARCH PROJECT – Family Member Interview and Proxy Consent for Resident –


QUT Ethics Approval Number 1700000521 RESEARCH TEAM Laura Tierney [email protected] 03 6226 4780 Elizabeth Beattie [email protected] 07 3138 3389 Elaine Fielding [email protected] 07 3138 5772 Margaret MacAndrew [email protected] 07 3138 5956 Kathleen Doherty [email protected] 03 6226 4752 STATEMENT OF CONSENT By signing below, you are indicating that you: Have read and understood the information document regarding this research project. Have had any questions answered to your satisfaction. Understand that if you have any additional questions you can contact the research team. Understand that you are free to withdraw without comment or penalty. Understand that if you have concerns about the ethical conduct of the research project

you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].

Are the authorised representative who is able to make decisions with and/or on behalf of [resident name].

Agree to participate in the project (an interview). Agree to [resident name] participating in the project (which may include an interview and

unobtrusive observations). Agree to the researchers accessing [resident name] medical record and discussing their

health and care with a staff member. Please tick the relevant box below:

I agree for the interview to be audio recorded. I do not agree for the interview to be audio recorded.

Name

Signature

Date

PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.

321

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Staff Informant Questionnaire –





DESCRIPTION This research project is being undertaken as part of a PhD study by Laura Tierney. The purpose of this research project is to understand ‘meaningful activity’ in the context of the lives of people with dementia in residential aged care facilities. The research will explore what makes activities meaningful and the potential impact of participation in these activities on resident quality of life from the perspective of residents, their family members and facility staff. Your input will also help us understand the quality of life and clinical status of one of the residents participating in this study who is under your care. You are invited to consider participating in this research project because you have been identified as providing care for one of the participating residents. It is important that you understand that your involvement in this study is voluntary. While we would be pleased to have you participate, we respect your right to decline. There will be no consequences to you if you decide not to participate and this will not affect you in any way. If you decide to discontinue participation at any time, you may do so without providing an explanation or incurring penalty. PARTICIPATION Your participation will involve helping one of the researchers answer questions regarding your understanding of an individual resident’s level of depression, agitation, degree of wandering behaviours and nutritional intake. This will take approximately 60 minutes of your time. You will need to be able to comfortably speak and understand English to answer these questions. While every effort will be made to schedule a time within normal work hours you may be asked to participate outside normal work hours. If the time selected doesn’t suit you, you are free to withdraw. Your participation in this research project is entirely voluntary. If you do agree to participate,

322

you can withdraw from the research project at any time without comment or penalty. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT, the University of Tasmania or your facility. EXPECTED BENEFITS It is expected that this research project will not benefit you directly. However, it may benefit aged care facility residents as a better understanding of meaningful activity will help residential aged care facilities provide opportunities and support for residents with dementia to participate in these activities. RISKS There are no risks beyond normal day-to-day living associated with your participation in this research project. However, QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT research projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant. Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. The Alzheimer’s Australia National Dementia Helpline is a free confidential information and support service for anyone who has been diagnosed with dementia, knows someone with dementia, works with people with dementia or someone who simply wants to know more. The Helpline operates during business hours on 1800 100 500. For participants in Tasmania, the Alzheimer’s Australia Tasmania Dementia and Memory Community Centre can provide support on 03 6279 1100. Alternatively, an independent counselling service will also be available through the facility should you require further support. You can contact this service via the following: [insert details] PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy. CONSENT TO PARTICIPATE We would like to ask you to sign a written consent form to confirm your agreement to participate. QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT If you have any questions or require further information, please contact one of the listed researchers:

Laura Tierney [email protected] 03 6226 4780 (located in Tasmania) Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland)

323

CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.


324

CONSENT FORM FOR QUT RESEARCH PROJECT Staff Informant Questionnaire




Are able to comfortably speak and understand English.




Understand that if you have concerns about the ethical conduct of the research project you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].

Agree to participate in the research project.

Name

Signature

Date


325

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Staff Focus Group –





DESCRIPTION

This research project is being undertaken as part of a PhD study by Laura Tierney.

The purpose of this research project is to understand ‘meaningful activity’ in the context of the lives of people with dementia in residential aged care facilities. The research will explore what makes activities meaningful and the potential impact of participation in these activities on resident quality of life from the perspective of residents, their family members and facility staff. Your input will also help us understand what aids or prevents participation in meaningful activities by residents under your care.

You are invited to consider participating in this research project because you are a staff member at one of the participating residential aged care facilities and involved in providing care and/or activity support for residents with dementia. It is important that you understand that your involvement in this study is voluntary. While we would be pleased to have you participate, we respect your right to decline. There will be no consequences to you if you decide not to participate, and this will not affect you in any way. If you decide to discontinue participation at any time, you may do so without providing an explanation or incurring penalty. PARTICIPATION

Your participation will involve an audio recorded focus group at your facility that will take approximately 60 minutes of your time.


What do you think makes activities meaningful to residents?

How would you know if an activity a resident is doing is meaningful to them? You will need to be able to comfortably speak and understand English to participate in this focus group discussion.

326

While every effort will be made to schedule a time within normal work hours you may be asked to participate outside normal work hours. If the time selected doesn’t suit you, you are free to withdraw.

Your participation in this research project is entirely voluntary. If you do agree to participate, you can withdraw from the research project without comment or penalty. You can withdraw anytime during the focus group. If you withdraw within 2 weeks after the focus group, on request any identifiable information already obtained from you will be destroyed. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT, the University of Tasmania, or your facility.

EXPECTED BENEFITS

It is expected that this research project will not benefit you directly. However, it may benefit aged care facility residents as a better understanding of meaningful activity will help residential aged care facilities provide opportunities and support for residents with dementia to participate in these activities.

RISKS

There are no risks beyond normal day-to-day living associated with your participation in this research project.

However, QUT provides for limited free psychology, family therapy or counselling services (face-to-face only) for research participants of QUT research projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counselling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant.

Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. The Alzheimer’s Australia National Dementia Helpline is a free confidential information and support service for anyone who has been diagnosed with dementia, knows someone with dementia, works with people with dementia or someone who simply wants to know more. The Helpline operates during business hours on 1800 100 500.

For participants in Tasmania, the Alzheimer’s Australia Tasmania Dementia and Memory Community Centre can provide support on 03 6279 1100.

Alternatively, an independent counselling service will also be available through the facility should you require further support. You can contact this service via the following: [insert details]

PRIVACY AND CONFIDENTIALITY

All comments and responses will be treated confidentially unless required by law.

As the research project involves an audio recording:

You will have the opportunity to verify your comments and responses prior to final inclusion.

The audio recording will be destroyed 5 years after the last publication. The audio recording will not be used for any other purpose. Only the named researchers will have access to the audio recording.

327

It is not possible to participate in the research project without being audio recorded.

Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy.

CONSENT TO PARTICIPATE

We would like to ask you to sign a written consent form to confirm your agreement to participate.

QUESTIONS / FURTHER INFORMATION ABOUT THE RESEARCH PROJECT

If you have any questions or require further information, please contact one of the listed researchers:

Laura Tierney [email protected] 03 6226 4780 (located in Tasmania)

Elizabeth Beattie [email protected] 07 3138 3389 (located in Queensland)

CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE RESEARCH PROJECT

QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.

THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT.

PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.

328

CONSENT FORM FOR QUT RESEARCH PROJECT Staff Focus group




Are able to comfortably speak and understand English.




Understand that if you have concerns about the ethical conduct of the research project you can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].

Understand that the research project will include an audio recording.

Agree to participate in the research project.

Name

Signature

Date


329

Appendix 4

Measures used for RACF environment review

Environmental Audit Tool - EAT Time: Facility:

Unit: Observer: No. of residents when full:

Safety

N/A

NO

YES A

dd 1

if

Uno

btru

sive

Score

1. Is the garden secure, i.e. are residents prevented from getting over/under fence or out of the gate without the assistance of a staff member?

0 0 1 1 Saf1

2. If the front door leads out of the unit is it secure?

0 0 1 1 Saf2

3. Are all side doors leading out of the unit secure?

0 0 1 1 Saf3

4. Are bedroom windows restricted in the extent to which they open so that residents cannot climb out?

0 0 1 1 Saf4

5. Is the garden easily supervised from the point(s) where staff spend most of their time?

0 0 1 1 Saf5

6. Is there a way to keep residents who are not safe with knives and/or appliances out of the kitchen?

0 0 1 1 Saf6

7. If the kitchen is used by residents is there a lockable knife draw in the kitchen?

0 0 1 1 Saf7

8.

If the kitchen is used by residents is the stove a gas stove? 0 0 1 Saf7

9. If the kitchen is used by residents is there a master switch that can be turned off quickly? 0 0 1 Saf9

10. Is the temperature of the water from all taps accessible to residents limited so that it cannot scald? 0 0 1 Saf10

11. If residents are involved in meal preparation are the pots and pans used small enough for them to lift easily?

0 0 1 Saf11

12. Are all floor areas safe from being slippery when wet (water or urine)?

0 0 1 Saf12

13. Is the lounge room easily supervised from the point(s) where the staff spend most of their time?

0 0 1 1 Saf13

14. Are all areas used by residents well lit? 0 0 1 Saf14

Total Saftot

330

Size

10 or less 11-16 17-30 30+

Score

1. How many people live in the unit?

Score

3

Score

2

Score

1

Score

0 Size

Visual Access Features

Score

1. What proportion of confused residents can see their bedroom door from the lounge room?

N/A

0

Score 0

25%

Score

1

50%

Score

2

75%

Score

3

100%

Score

4 Vis1 2. What proportion of confused residents can see

the lounge room as soon as they leave their bedroom?

N/A

0

Score 0

25%

Score

1

50%

Score

2

75%

Score

3

100%

Score

4 Vis2 3. What proportion of confused residents can see

the dining room as soon as they leave their bedroom?

N/A

0

Score 0

25%

Score

1

50%

Score

2

75%

Score

3

100%

Score

4 Vis3 4. Can the exit to the garden be seen from the

lounge room? If there is more than 1 lounge room answer with reference to the one most used by most confused residents.

N/A

NO

Score 0

YES

Score 1 Vis4

5. Can the dining room be seen into from the lounge room? If there is more than 1 dining room or lounge room answer with reference to those used by most confused residents.

N/A

NO

Score 0

YES

Score 1 Vis5

6. Can the kitchen be seen into from the lounge room? If there is more than 1 lounge room answer with reference to the one used by most confused residents.

N/A

NO

Score 0

YES

Score 1 Vis6

7. Can the kitchen be seen into from the dining room? If there is more than 1 dining room answer with reference to the one used by most confused residents.

N/A

NO

Score 0

YES

Score 1 Vis7

331

Visual Access Features

Score

8. Can a toilet be seen from the dining room? If there is more than 1 dining room answer with reference to the one used by most confused residents.

N/A

NO

Score 0

YES

Score 1 Vis8 9. Can a toilet be seen from the lounge room?

(If there is more than 1 lounge room answer with reference to the one used by most confused residents.)

N/A

NO

Score 0

YES

Score 1 Vis9 10. Can the lounge room be seen into from the

point(s) where staff spend most of their time?

N/A

NO

Score 0

YES

Score 1 Vis10

Total Score vistot

Stimulus reduction features

Yes

No

Score

1. Does the doorbell attract the attention of the residents?

0 1

Stim1

2. Is the noise from the kitchen distracting for the residents?

0 1

Stim2

3. Are doors to cleaners’ cupboards, storerooms and other areas where residents may find danger easily seen (i.e. not hidden or painted to merge with the walls?)

0 1

Stim3

4. Is the wardrobe that the resident uses full of a confusing number of clothes? 0 1 Stim4

5. Are deliveries of food, linen etc. taken across public areas such as the lounge or dining room?

0 1

Stim5

6. Is there a public address, staff paging or call system in use that involves the use of loud speakers, flashing lights, bells etc?

0 1

Stim6

7. Is the front entry to the unit easily visible to the residents?

0 1

Stim7

8. Is the service entry (where food, linen etc is delivered to) easily visible to the residents?

0 1

Stim8

Score is number of NO responses

stimtot

332

Highlighting useful stimuli

NO

YES

Score

1. Is the dining room looked into from the lounge room or clearly marked with a sign or symbol?

0 1 High1

2. Is the lounge room either looked into from the dining room or clearly marked with a sign or symbol?

0 1 High2

3. Do bedrooms have a sign, symbol or display that identifies them as belonging to a particular individual?

0 1 High3

4. Are the shared bathrooms and/or toilets clearly marked with a sign, symbol or colour coded door? 0 1 High4

5. Is the kitchen either looked into from the lounge or dining room or clearly marked with a sign or symbol? 0 1 High5

6. Are toilets visible as soon as the toilet/bathroom door is opened? 0 1 High6

7. Is there a lot of natural lighting in the lounge room? 0 1 High7

8. Is the artificial lighting bright enough in all areas? 0 1 High8

9. Is the lighting free of glare, eg from bare bulbs, off shiny surfaces? 0 1 High9

Score is number of YES responses hightot

Provision for wandering and access to outside area

NO

YES

Score

1a Is there a clearly defined and easily accessible (i.e. no locked exit) path in the garden that guides the resident back to their starting point without taking them into a blind alley?

0 1 Wand1a

1b Does the external path allow the resident to see into areas that might invite participation in an appropriate activity other than wandering? 0 1 Wand1b

1c Is the path within a secure perimeter 0 1 Wand1c

1d Can this path be easily and unobtrusively surveyed by staff members? 0 1 Wand1d

1e Are there chairs or benches along the path where people can sit and enjoy the fresh air? 0 1

Wand1e

1f Are there both sunny and shady areas along the path? 0 1 Wand1f

1g Does the path take residents past a toilet? 0 1 Wand1g

2a

Is there a clearly defined path inside that takes the resident around furniture and back to their starting point without taking them into a blind alley? 0 1

Wand2a

2b Does the internal path allow the resident to see into areas that might invite participation in an appropriate activity other than wandering? 0 1 Wand2b

Score is number of YES responses Wandtot

333

Familiarity

Many

A few

None

Score

1. Are there any colours in the furnishings or the decoration that would not have been familiar to the majority of residents when they were 30 years old?

0 1 2

Fam1

2. Are there any taps, light switches, door knobs that are to be used by residents that are of a design that would not have been familiar to the majority of residents when they were 30 years old?

0 1 2

Fam2

3. Are there any pieces of furniture in the lounge room or the dining room that are of a design that would not have been familiar to the majority of residents when they were 30 years old?

0 1 2

Fam3

4. Are there any pieces of furniture in the bedrooms that are of a design that would not have been familiar to the majority of residents when they were 30 years old?

0 1 2

Fam4

5. How many residents have their own ornaments, photos in their bedroom 2 1 0

Fam5 6. How many residents have their own furniture in their bedroom

2 1 0 Fam6

Total Score Famtot

Privacy and Community

Score

1 Are there small areas (nooks) that provide opportunities for casual interaction and quiet chats?

None Score 0

1 Score 1

2 Score 2

3 or more

Score 3 Priv1

2 How many of these areas or nooks have views of pleasant or interesting scenes (outside, the living room, the nursing station)?

None Score 0

1 Score 1

2 Score 2

3 or more

Score 3 Priv2

3 Do the shared living areas support small group activities (4-6 people) without re-arranging the furniture?

N/A NO Score 1

YES Score 2 Priv3

4 Does the dining room provide opportunities for residents to eat in small groups (2-4)?

N/A NO Score 1

YES Score 2 Priv4

5 Does the dining area provide opportunities for people to eat alone?

N/A NO Score 1

YES Score 2 Priv5

Total Score Privtot

334

Community links

NO

YES

Score

1.

Is there an area or room somewhat removed from the main dining room where families can share meals with their relatives?

0 1 Com1

1a

Is this room/area domestic and familiar in nature, to reassure family members and friends and encourage them to visit and to participate in the care of the resident?

0 1 Com1b

Score is number of YES responses Comtot

Domestic Activity Record the percentage of residents who:

None

Up to 50%

More

Than 50%

Score

1. Have access to a kitchen 0 1 2 Dom1 2. Have a significant involvement in main meal preparation 0 1 2 Dom2 3. Have a significant involvement in making snacks or drinks 0 1 2 Dom3 4. Have a significant involvement in keeping bedroom clean and tidy 0 1 2 Dom4 5. Have a significant involvement in personal laundry 0 1 2 Dom5 6. Are involved in gardening 0 1 2 Dom6 7. Have constant and easy access to a lounge? 0 1 2 Dom7 8. Have constant and easy access to a dining room? 0 1 2 Dom8

Total Score Domtot

335

Summary of Scores

Possible Score Actual Score Percentage

Safety 22

Size 3

Visual Access 19

Stimulus Reduction 8

Stimulus Enhancement 9

Wandering and access outside 9

Familiarity 12

Privacy and community 12

Community access 2

Domestic activities 16

Total 112

Smith R, Fleming R, Chenoweth L, Jeon YH, Stein-Parbury J, Brodaty H. Validation of the Environmental Audit Tool in both purpose-built and non-purpose-built dementia care settings. Australasian Journal on Ageing. 2011;Online early:DOI: 10.1111/j.741-6612.2011.00559.x.

336

Pers

on-C

entr

ed E

nvir

onm

ent a

nd C

are

Ass

essm

ent T

ool

(PC

EC

AT

) B

urke

C, S

tein

-Par

bury

J, L

usco

mbe

G, C

heno

wet

h L.

Dev

elop

men

t and

test

ing

of th

e pe

rson

-cen

tere

d en

viro

nmen

t and

car

e as

sess

men

t too

l (PC

ECA

T). C

linic

al G

eron

tolo

gist

. 20

16;3

9(4)

. SE

CT

ION

A

Cha

ract

eris

tics o

f the

Hom

e or

Car

e U

nit.

1. In

dica

te w

heth

er th

e H

ome

or In

divi

dual

Car

e U

nit i

s bei

ng a

sses

sed

(Circ

le c

orre

ct re

spon

se).

Hom

e: Y

es /

No

Car

e U

nit:

Yes

/ N

o 2.

Ide

ntifi

catio

n co

de o

f the

hom

e/ca

re u

nit

Dat

e as

sess

men

t was

und

erta

ken_

3. W

hat i

s the

tota

l num

ber o

f peo

ple

who

can

live

in th

e ho

me

or c

are

unit

bein

g as

sess

ed?

4. H

ow m

any

peop

le p

erm

anen

tly li

ve in

the

hom

e or

car

e un

it on

the

day

of a

sses

smen

t?

5. H

ow m

any

peop

le a

re li

ving

in th

e ho

me

or c

are

unit

for r

espi

te o

n th

e da

y of

ass

essm

ent?

6.

H

ow m

any

peop

le h

ave

dem

entia

as t

heir

prim

ary

diag

nosi

s.

num

ber o

ut o

f

(tot

al n

umbe

r of p

eopl

e)

337

7. H

ow m

any

peop

le h

ave

a “h

igh

leve

l app

rova

l” (n

ursi

ng h

ome)

? 8.

How

man

y pe

ople

hav

e a

“low

leve

l app

rova

l” (h

oste

l)?

9. W

hat i

s the

tota

l num

ber o

f bed

room

s in

the

hom

e or

car

e un

it be

ing

asse

ssed

?

9.1

How

man

y ar

e si

ngle

bed

room

s?

9.2

How

man

y be

droo

ms a

ccom

mod

ate

two

peop

le?

9.3

How

man

y be

droo

ms a

ccom

mod

ate

thre

e +

peop

le?

9.4

How

man

y “c

oupl

es”

bedr

oom

s (ie

two

adjo

inin

g ro

oms w

ith a

n in

terc

onne

ctin

g do

or)

are

ther

e?

10.1

Wha

t is t

he ra

tio o

f toi

let t

o pe

ople

livi

ng in

the

hom

e or

car

e un

it?

hom

e or

car

e un

it.

10.2

Wha

t is t

he ra

tio o

f sho

wer

s to

peop

le li

ving

in th

e ho

me

or c

are

unit?

th

e h

ome

or c

are

unit.

num

ber o

f toi

lets

to

num

ber o

f sho

wer

s to

num

ber o

f peo

ple

livin

g in

the

num

ber o

f peo

ple

livin

g in

10.3

How

man

y en

suite

bat

hroo

ms t

o si

ngle

bed

room

s are

ther

e?

338

11.

Wha

t are

the

tota

l num

ber o

f pai

d ho

urs w

orke

d by

em

ploy

ed st

aff (

perm

anen

t, pa

rt-tim

e, c

ontra

ctua

l and

cas

ual)

each

wee

k in

eac

h of

the

follo

win

g ro

les?

Pe

rman

ent F

ull

Perm

anen

t Par

t C

ontra

cted

C

asua

l St

aff i

nvol

ved

in d

irect

car

e of

peo

ple

livin

g in

the

hom

e or

car

e un

it:

Tim

e Ti

me

Staf

f St

aff

11.1

C

are

co-o

rdin

ator

/ D

DO

N

11

.2

Reg

iste

red

nurs

e

11

.3

Enro

lled

nurs

e

11

.4

AIN

/ PC

A /

CSE

11

.5

Phys

ioth

erap

ist /

Phy

siot

hera

py A

id

11.6

D

iver

sion

al th

erap

ist/r

ecre

atio

n of

ficer

11

.7

Past

oral

car

e st

aff /

Wel

fare

staf

f

11

.8

Tota

l ho

urs

=

12

. In

the

mon

th p

rior t

o th

is a

sses

smen

t with

the

PCEC

AT

, wha

t was

the

tota

l num

ber o

f hou

rs w

orke

d b

y ag

ency

staf

f in

the

hom

e or

car

e un

it in

dire

ct c

are

role

s?

hour

s

13. H

ow m

any

nurs

es a

nd c

are

staf

f ha

ve re

sign

ed fr

om th

e ho

me

or c

are

unit

in th

e pa

st 6

mon

ths?

M

anag

er

Nur

ses (

RN

, EN

and

EEN

) C

are

staf

f (A

IN, P

CA

, CSE

)

339

SEC

TIO

N B

Dom

ain

1. O

rgan

isat

iona

l Cul

ture

Prin

cipl

es o

f Per

son-

Cen

tred

Car

e re

latin

g to

org

aniz

atio

nal

cultu

re

Acc

redi

tatio

n st

anda

rds (

Exp

ecte

d ou

tcom

es) r

elat

ing

to

orga

nisa

tiona

l cul

ture

C

omm

itmen

t of t

he o

rgan

isatio

n / h

ome

to a

cul

ture

whe

re th

e pe

rson

com

es fi

rst.

1.

3 Ed

ucat

ion

and

staf

f dev

elop

men

t

1.5

Plan

ning

and

lead

ersh

ip

1.

6 H

uman

reso

urce

man

agem

ent

1.

8 In

form

atio

n sy

stem

s

St

aff w

ork

prac

tices

ack

now

ledg

e, re

spec

t and

supp

ort t

he

uniq

uene

ss o

f the

per

son,

incl

udin

g th

eir c

ultu

re, b

ackg

roun

d, a

nd

care

nee

ds

2.

4 to

2.1

7 Ex

pect

ed o

utco

mes

(See

App

endi

x A

, p.

30 to

31)

3.4

to 3

.9 E

xpec

ted

outc

omes

(See

App

endi

x A

, p.

32)

M

anag

ers a

nd st

aff c

ontin

ually

impr

ove

prac

tice

to e

nhan

ce th

e lif

e of

the

pers

on, w

orki

ng in

con

sulta

tion

with

the

pers

on’s

fa

mily

/repr

esen

tativ

e.

1.

1, 2

.1, 3

.1 a

nd 4

.1 C

ontin

uous

impr

ovem

ent

1.

4 C

omm

ents

and

com

plai

nts

3.

4 Em

otio

nal s

uppo

rt

3.5

Inde

pend

ence

3.6

Priv

acy

and

dign

ity

3.

8 C

ultu

ral a

nd sp

iritu

al li

fe

3.

9 C

hoic

e an

d de

cisi

on m

akin

g

4.4

Livi

ng e

nviro

nmen

t

4.8

Cat

erin

g cl

eani

ng a

nd la

undr

y

St

aff

are

resp

ecte

d an

d su

ppor

ted

in th

eir r

ole/

s and

hav

e ac

cess

to a

ppro

pria

te tr

aini

ng a

nd p

rofe

ssio

nal d

evel

opm

ent

for t

he ro

le/s

.

1.

6 H

uman

reso

urce

man

agem

ent

1.

8 In

form

atio

n sy

stem

s

1.3,

2.3

, 3.3

and

4.3

Edu

catio

n an

d sta

ff d

evel

opm

ent

340

Dom

ain

1. O

rgan

isat

iona

l Cul

ture

R

ate

your

org

anis

atio

n’s c

urre

nt st

atus

rega

rdin

g a

Pers

on-C

entre

d C

are

cultu

re u

sing

the

scal

e be

low

. Th

e co

mm

ents

col

umn

can

be u

sed

to re

cord

any

act

ion

that

has

bee

n ta

ken

to a

chie

ve th

e sp

ecifi

c in

dica

tor.

0 =

Not

at a

ll 1

= So

met

imes

2

= A

gre

at d

eal

3 =

All

of th

e tim

e

Org

anis

atio

nal c

ultu

re i

ndic

ator

s tha

t sup

port

a p

erso

n-ce

ntre

d ap

proa

ch to

car

e R

espo

nse

Scor

e C

omm

ents

1.1

The

Hom

e’s M

issi

on, V

isio

n, V

alue

s Sta

tem

ent (

or si

mila

r) st

ates

a

com

mitm

ent t

o th

e m

eetin

g th

e un

ique

nee

ds o

f the

per

son

livin

g in

the

Hom

e or

Car

e U

nit.

A

The

Hom

e ha

s a p

olic

y re

latin

g to

the

use

of a

Per

son-

Cen

tred

Car

e ph

i loso

phy

that

is u

nder

pinn

ed b

y re

spec

t and

dig

nity

. 0

1 2

3

B

The

Hom

e ha

s pro

cedu

res o

utlin

ing

how

Per

son-

Cen

tred

Car

e is

pe

rfor

med

. 0

1 2

3

1.2

The

per

son

and

thei

r fa

mily

/rep

rese

ntat

ive

are

awar

e of

the

hom

e’s

com

mitm

ent t

o a

pers

on-c

entr

ed a

ppro

ach.

A

Prio

r to

adm

issi

on, t

he h

ome

prov

ides

info

rmat

ion

rega

rdin

g se

rvic

es a

nd

prac

tices

to th

e pe

rson

and

thei

r fam

ily/re

pres

enta

tive.

0

1 2

3

341

O

rgan

isat

iona

l cul

ture

ind

icat

ors (

cont

) R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e

B

The

Hom

e’s H

andb

ook

stat

es a

pos

itive

com

mitm

ent t

o pr

ovid

ing

Pers

on-

Cen

tred

Car

e an

d st

ates

how

this

is p

rovi

ded

in th

e ho

me.

0

1 2

3

C

With

in th

e fir

st w

eek

follo

win

g ad

mis

sion

ther

e is

an

orie

ntat

ion

to th

e ho

me

and

its P

erso

n-C

entre

d se

rvic

es fo

r the

per

son

and

thei

r fa

mily

/repr

esen

tativ

e.

0 1

2 3

1.3

The

re is

reg

ular

con

sulta

tion

rega

rdin

g th

e pe

rson

’s in

divi

dual

car

e ne

eds a

nd p

refe

renc

es.

A

The

indi

vidu

al p

refe

renc

es a

nd d

esire

s of t

he p

erso

n ar

e ob

tain

ed p

rior t

o th

e de

velo

pmen

t of t

heir

Car

e Pl

an.

0 1

2 3

B

Rel

evan

t to

thei

r lev

el o

f cap

abili

ty, t

he p

erso

n an

d hi

s/he

r fa

mily

/repr

esen

tativ

e ar

e gi

ven

the

oppo

rtuni

ty to

col

labo

rate

with

staf

f in

de

term

inin

g al

l asp

ects

of t

he p

erso

n’s C

are

Plan

(in

pers

on o

r via

pho

ne).

0 1

2 3

C

Staf

f gai

n in

form

atio

n on

the

end-

of-li

fe b

elie

fs o

f the

per

son,

thei

r wis

hes

and

p ref

erre

d pr

actic

es a

nd w

hat i

s mea

ning

ful i

n th

eir l

ife.

0 1

2 3

D

Thro

ugho

ut th

eir s

tay

in th

e ho

me,

ther

e is

ong

oing

con

sulta

tion

with

the

pers

on a

nd/o

r the

ir fa

mily

/repr

esen

tativ

e pr

ior t

o ta

king

act

ion

for s

peci

fic

care

nee

ds.

0 1

2 3

342

O

rgan

isat

iona

l cul

ture

ind

icat

ors (

cont

) R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e

E

Inde

pend

ent a

nd a

nony

mou

s fee

dbac

k is

soug

ht fr

om th

e fa

mily

/ re

pres

enta

tive

abou

t asp

ects

of c

are

they

obs

erve

. 0

1 2

3

1.4

Acc

ordi

ng to

thei

r ab

ility

, the

per

son

and

thei

r fa

mily

/rep

rese

ntat

ive

have

the

oppo

rtun

ity to

mak

e su

gges

tions

and

lodg

e a

com

plai

nt.

A

On

adm

issi

on to

the

hom

e, in

form

atio

n ab

out t

he c

ompl

aint

s and

su

gges

tion

syst

em o

utlin

ing

aven

ues a

vaila

ble,

pro

cess

, tim

efra

me

and

feed

back

is g

iven

to th

e pe

rson

and

thei

r fam

ily/re

pres

enta

tive.

0 1

2 3

B

The

hom

e se

eks i

ndep

ende

nt a

nd a

nony

mou

s fee

dbac

k fr

om fa

mili

es/

repr

esen

tativ

es a

bout

thei

r sat

isfa

ctio

n w

ith h

ow c

ompl

aint

s/su

gges

tions

are

ad

dres

sed.

0 1

2 3

1.5

Staf

f are

aw

are

of th

e or

gani

zatio

n’s c

omm

itmen

t to

prov

idin

g pe

rson

- ce

ntre

d ca

re se

rvic

es.

A

Staf

f pos

ition

des

crip

tions

hig

hlig

ht th

e re

spon

sibi

lity

to p

rovi

de p

erso

n-

cent

red

care

. 0

1 2

3

B

Staf

f orie

ntat

ion

fully

exp

lain

s prin

cipl

es o

f per

son-

cent

red

care

pra

ctic

es

and

how

thes

e ar

e ap

plie

d in

eve

ryda

y ca

re.

0 1

2 3

343

O

rgan

isat

iona

l cul

ture

ind

icat

ors (

cont

) R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e

C

Staf

f ha

ve re

ceiv

ed tr

aini

ng in

per

son-

cent

red

care

as p

art o

f the

ir pr

ofes

sion

al d

evel

opm

ent.

0 1

2 3

D

Staf

f hav

e fo

rmal

ann

ual p

erfo

rman

ce a

ppra

isal

s to

iden

tify

pers

on-e

ntre

d sk

ill d

evel

opm

ent.

0 1

2 3

1.6

Man

ager

s and

staf

f dem

onst

rate

com

mitm

ent t

o pe

rson

-cen

tred

car

e.

A

Man

ager

s/se

nior

staf

f can

exp

lain

how

per

son-

cent

red

care

is im

plem

ente

d th

roug

h ca

re s

yste

ms.

0 1

2 3

B

Staf

f can

pro

vide

det

aile

d kn

owle

dge

of th

e ba

ckgr

ound

, nee

ds, d

esire

s and

pr

efer

ence

s of p

erso

ns th

ey re

gula

rly c

are

for.

0 1

2 3

C

Shift

ove

rlap

and

staf

f han

dove

rs o

ccur

whe

re a

ll st

aff r

ecei

ve u

p-to

-dat

e in

form

atio

n ab

out e

ach

pers

on’s

nee

ds a

nd th

eir c

urre

nt h

ealth

stat

us.

0 1

2 3

D

Ther

e ar

e op

portu

nitie

s at s

hift

hand

over

for s

taff

to d

iscu

ss w

ith e

ach

othe

r ho

w th

ey a

re im

plem

entin

g Pe

rson

-Cen

tred

Car

e.

0 1

2 3

E St

aff r

egul

arly

pro

vide

car

e se

rvic

es fo

r the

sam

e pe

rson

(for

a m

inim

um

perio

d of

3 m

onth

s).

0 1

2 3

344

O

rgan

isat

iona

l cul

ture

ind

icat

ors (

cont

) R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e

F W

ork

prac

tices

are

suff

icie

ntly

flex

ible

to e

nabl

e st

aff t

o re

spon

d to

the

pers

on’s

nee

ds a

s the

y oc

cur.

0 1

2 3

G

Staf

f dem

onst

rate

that

they

ass

ess a

ll po

tent

ial r

easo

ns fo

r the

per

son’

s di

stre

ss.

0 1

2 3

H

Whe

n a

pers

on is

dis

tress

ed st

aff o

ffer

com

fort

in k

eepi

ng w

ith th

e pe

rson

’s

pref

eren

ces a

nd n

eeds

. 0

1 2

3

1.7

Staf

f’s e

ffor

ts in

thei

r va

riou

s rol

es a

re r

ecog

nize

d an

d va

lued

.

A

Staf

f con

firm

they

are

off

ered

the

educ

atio

nal s

uppo

rt sp

ecifi

c to

Per

son-

C

entre

d C

are

that

they

nee

d to

und

erta

ke th

eir r

oles

. 0

1 2

3

B

Staf

f are

satis

fied

that

issu

es/c

once

rns t

hey

rais

e in

car

e de

liver

y ar

e ac

ted

upon

by

thei

r sup

ervi

sor/r

elev

ant p

erso

n.

0 1

2 3

C

Staf

f con

firm

thei

r man

ager

s ack

now

ledg

e/pr

aise

thei

r ach

ieve

men

ts in

us

ing

pers

on-c

entre

d ap

proa

ches

in c

arin

g fo

r the

per

son.

0

1 2

3

D

Staf

f con

firm

ther

e is

a c

ultu

re o

f res

pect

for a

ll st

aff.

0 1

2 3

A

dd sc

ores

to o

btai

n su

btot

al fo

r th

is se

ctio

n Su

btot

al =

Org

anis

atio

nal c

ultu

re

345

Dom

ain

2. C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

.

Prin

cipl

es o

f Per

son-

Cen

tred

Car

e in

car

e an

d ac

tivity

pro

gram

s A

ccre

dita

tion

stan

dard

s (E

xpec

ted

outc

omes

) rel

atin

g to

eac

h p e

rson

’s c

are

and

activ

ities

Th

e pe

rson

is re

spec

ted

and

valu

ed.

2.

4 to

2.1

7 Ex

pect

ed o

utco

mes

(See

App

endi

x A

, p.

30 to

31)

3.4

Emot

iona

l sup

port

3.

6 Pr

ivac

y an

d di

gnity

3.9

Cho

ice

and

deci

sion

mak

ing

C

are

and

activ

ity p

rogr

ams r

ecog

nize

the

pers

on’s

indi

vidu

ality

w

hile

re

info

rcin

g th

eir s

treng

ths,

pers

onal

attr

ibut

es a

nd re

mai

ning

sk

ills.

2.

4 C

linic

al c

are

3.

4 Em

otio

nal s

uppo

rt

3.5

Inde

pend

ence

3.7

Leisu

re in

tere

sts a

nd a

ctiv

ities

3.8

Cul

tura

l and

spiri

tual

life

3.9

Cho

ice

and

deci

sion

mak

ing

Th

e so

cial

env

ironm

ent s

uppo

rts th

e ps

ycho

logi

cal n

eeds

of t

he

pers

on:

the

need

for l

ove,

atta

chm

ent,

com

fort,

iden

tity,

occ

upat

ion

and

incl

usio

n.

3.

4 Em

otio

nal s

uppo

rt

3.5

Inde

pend

ence

3.7

Leisu

re in

tere

sts a

nd a

ctiv

ities

3.8

Cul

tura

l and

spiri

tual

life

3.9

Cho

ice

and

deci

sion

mak

ing

Th

ere

is a

com

mitm

ent t

o m

aint

aini

ng th

e pe

rson

’s in

depe

nden

ce,

allo

win

g ch

oice

and

invo

lvem

ent i

n de

cisi

on m

akin

g.

3.

5 In

depe

nden

ce

3.

8 C

ultu

ral a

nd sp

iritu

al li

fe

3.

9 C

hoic

e an

d de

cisi

on m

akin

g

4.4

Livi

ng e

nviro

nmen

t

Staf

f hav

e th

e ab

ility

to e

ngag

e w

ith th

e pe

rson

in th

eir

uniq

uene

ss th

roug

h op

enne

ss, f

lexi

bilit

y, c

reat

iven

ess a

nd

com

pass

ion

2.

4 C

linic

al c

are

3.

3 Ed

ucat

ion

and

staf

f dev

elop

men

t

3.4

Emot

iona

l sup

port

4.

4 Li

ving

env

ironm

ent

346

Dom

ain

2. C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

. R

ate

your

org

anis

atio

ns st

atus

in p

rovi

ding

a P

erso

n-C

entre

d ap

proa

ch in

car

e an

d ac

tivity

pro

gram

s, in

terp

erso

nal r

elat

ions

hips

and

in

tera

ctio

ns u

sing

the

scal

e be

low

. The

com

men

ts c

olum

n m

ay b

e us

ed to

reco

rd a

ny a

ctio

n th

at h

as b

een

take

n to

ach

ieve

the

spec

ific

indi

cato

r. 0

= N

ot a

t all

1 =

Som

etim

es

2 =

A g

reat

dea

l 3

= A

ll of

the

time

C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

de

mon

stra

te a

per

son-

cent

red

appr

oach

to c

are

Res

pons

e Sc

ore

Com

men

ts

2.1

Indi

vidu

al c

are

plan

s sup

port

the

pers

on’s

inde

pend

ence

as f

ar a

s po

ssib

le w

hile

add

ress

ing

thei

r un

ique

nee

ds a

nd d

esir

es.

A

Prio

r to

the

deve

lopm

ent o

f the

car

e pl

an c

ompr

ehen

sive

ass

essm

ents

are

co

nduc

ted,

incl

udin

g m

edic

al, f

unct

iona

l (ph

ysic

al, c

ogni

tive,

soci

al a

nd

psyc

holo

gica

l), e

mot

iona

l and

spiri

tual

dom

ains

.

0 1

2 3

B

Ass

essm

ents

are

con

duct

ed fo

r spe

cific

are

as o

f car

e (e

.g. m

obili

ty, r

isk

of

falls

, con

tinen

ce –

bow

el a

nd b

ladd

er a

nd b

ehav

ior)

0

1 2

3

C

The

care

pla

n fo

cuse

s on

how

to su

ppor

t the

per

son’

s abi

litie

s (th

eir

stre

ngth

s) m

ore

than

how

to c

ompe

nsat

e fo

r the

ir di

sabi

litie

s (th

eir d

efic

its).

0 1

2 3

347

C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

d e

mon

stra

te a

per

son-

cent

red

appr

oach

to c

are.

R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e

2.2

An

Indi

vidu

al L

ife H

isto

ry in

form

s eac

h pe

rson

’s R

ecre

atio

n an

d So

cial

Act

iviti

es.

A

A d

etai

led

Life

His

tory

/pro

file

is d

evel

oped

out

linin

g th

e pe

rson

’s in

tere

sts,

pers

onal

ity, p

refe

renc

es, p

ast o

ccup

atio

ns a

nd a

chie

vem

ents

. 0

1 2

3

B

The

pers

on’s

Life

His

tory

/pro

file

is ta

ken

into

con

side

ratio

n w

hen

deve

lopi

ng th

eir u

niqu

e A

ctiv

ity P

lan.

0

1 2

3

C

The

pers

on h

as in

put t

o de

velo

ping

thei

r uni

que

Act

ivity

Pla

n at

the

leve

l of

thei

r abi

lity.

0

1 2

3

D

The

pers

on p

artic

ipat

es in

recr

eatio

nal a

nd so

cial

act

iviti

es th

at m

atch

thei

r in

tere

sts a

nd n

eeds

. 0

1 2

3

E

The

pers

on p

rovi

des s

taff

with

feed

back

, bot

h po

sitiv

e an

d ne

gativ

e, o

n th

eir a

ctiv

ity p

lan

at th

e le

vel o

f the

ir ab

ility

. 0

1 2

3

348

C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

d e

mon

stra

te a

per

son-

cent

red

appr

oach

to c

are.

R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e 2.

3 T

here

is r

espe

ct fo

r th

e pe

rson

’s u

niqu

e id

entit

y (p

erso

nhoo

d)

A

Staf

f use

eac

h pe

rson

’s li

fe h

isto

ry/p

rofil

e to

gai

n in

form

atio

n on

thei

r pe

rson

al b

elie

fs a

nd w

hat i

s mea

ning

ful i

n th

eir l

ife.

0 1

2 3

B

Ther

e ar

e av

enue

s ava

ilabl

e fo

r the

per

son

to e

xpre

ss th

eir i

ndiv

idua

l sp

iritu

ality

in m

eani

ngfu

l way

s. 0

1 2

3

C

The

back

grou

nds o

f peo

ple

from

cul

tura

lly a

nd li

ngui

stic

ally

div

erse

so

ciet

ies a

re a

ppre

ciat

ed a

nd a

ckno

wle

dged

thro

ugh

prov

isio

n of

pre

ferr

ed

food

, mus

ic, a

ctiv

ities

and

cel

ebra

tions

.

0 1

2 3

D

Staf

f use

lang

uage

-spe

cific

or s

ymbo

lic c

ue c

ards

(or s

imila

r) to

ena

ble

com

mun

icat

ion

with

the

pers

on if

requ

ired.

0

1 2

3

E

Staf

f res

pect

the

pers

on’s

cho

ices

(e.g

. foo

ds, a

ctiv

ities

, tim

e of

get

ting

out

of b

ed e

tc),

or a

ltern

ativ

e ch

oice

s are

neg

otia

ted

if un

able

to b

e fu

lly m

et.

0 1

2 3

F St

aff u

se th

e pe

rson

’s p

refe

rred

mem

orab

ilia

(pho

tos,

obje

cts)

to a

ssis

t the

m

in m

aint

aini

ng c

omm

unic

atio

n an

d re

latio

nshi

ps w

ith fa

mily

and

clo

se

frie

nds.

0 1

2 3

349

C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

d e

mon

stra

te a

per

son-

cent

red

appr

oach

to c

are.

R

espo

nse

Scor

e C

omm

ents

Res

pons

e Sc

ale:

0 =

Not

at a

ll; 1

= S

omet

imes

; 2

= A

gre

at d

eal;

3 =

All

of th

e tim

e

2.4

Staf

f mai

ntai

n po

sitiv

e in

terp

erso

nal r

elat

ions

hips

with

eac

h pe

rson

.

A

Staf

f mee

t the

per

son’

s nee

d fo

r per

sona

l int

erac

tion

by e

ngag

ing

with

them

in

mea

ning

ful s

ocia

l con

vers

atio

n.

0 1

2 3

B

Staf

f eng

age

in c

ultu

rally

app

ropr

iate

and

pre

ferr

ed p

hysi

cal c

onta

ct w

ith

the

pers

on e

.g. t

ouch

, sig

ns o

f aff

ectio

n an

d pe

rson

al c

are.

0

1 2

3

A

dd sc

ores

to o

btai

n su

btot

al fo

r th

is se

ctio

n Su

btot

al =

Car

e an

d A

ctiv

ities

, In

terp

erso

nal R

elat

ions

hips

an

d In

tera

ctio

ns

350

Rat

ings

Fo

r eac

h do

mai

n lis

t the

subt

otal

of t

he sc

ores

reco

rded

M

axim

um sc

ore

Dom

ain

1: –

Org

anis

atio

nal C

ultu

re :

Subt

otal

scor

e =

(84)

D

omai

n 2:

– C

are

and

Act

iviti

es, a

nd In

terp

erso

nal R

elat

ions

hips

and

Inte

ract

ions

:

Subt

otal

scor

e

=

(48)

Tot

al S

core

=

(132

)

351

Appendix 5

Resident interview quantitative measures

The Modified Mini-Mental State (3MS) Test Teng, E.L., & Chui, H.C. (1987). The Modified Mini-Mental State (3MS) examination. Journal of Clinical Psychiatry, 48(8), 314-318.

352

Quality of Life: AD (LTC)- Resident

Circle responses.

1. Physical health Poor Fair Good Excellent

2. Energy Poor Fair Good Excellent

3. Mood Poor Fair Good Excellent

4. Living situation Poor Fair Good Excellent

5. Memory Poor Fair Good Excellent

6. Family Poor Fair Good Excellent

7. Relationships with people who work here

Poor Fair Good Excellent

8. Friends Poor Fair Good Excellent

9. Self over all Poor Fair Good Excellent

10. Ability to keep busy Poor Fair Good Excellent

11. Ability to do things for fun


12. Ability to take care of oneself


13. Ability to live with others Poor Fair Good Excellent

14. Ability to make choices in one’s life


15. Life over all Poor Fair Good Excellent

Comments:

___________________________________________________________________________

___________________________________________________________________________

___________________________________________________________________________

Logsdon RG, Albert SM. Assessing quality of life in Alzheimer's disease: Conceptual and methodological issues. Journal of Mental Health and Aging. 1999;5(1):3-6.

353

GERIATRIC DEPRESSION SCALE

Check response

DK = Don’t know NR = No response or nonsense response REF = Refusal to answer question

IF RESPONSE OF “SOMETIMES”, RESTATE THE QUESTION: “How do you feel most of the time?”

1. Are you basically satisfied with your life? Yes No DK/NR/REF

2. Have you dropped most of your activities and interests? Yes No DK/NR/REF

3. Do you feel that your life is empty? Yes No DK/NR/REF

4. Do you often get bored? Yes No DK/NR/REF

5. Are you in good spirits most of the time? Yes No DK/NR/REF

6. Are you afraid that something bad is going to happen to you? Yes No DK/NR/REF

7. Do you feel happy most of the time? Yes No DK/NR/REF

8. Do you often feel helpless? Yes No DK/NR/REF

9. Do you think it is wonderful to be alive? Yes No DK/NR/REF

10. Do you feel worthless the way you are now? Yes No DK/NR/REF

11. Do you feel full of energy? Yes No DK/NR/REF

12. Do you feel that your situation is hopeless? Yes No DK/NR/REF

TOTAL SCORE: _________

SCORE > 4 = PROBABLE DEPRESSION

Scoring system: Each BOLD-FACED answer counts one (1) point.

Do not calculate total score if more than 4 of the 12 questions have DK/NR/REF answers

Sutcliffe, C., Cordingley, L., Burns, A., Mozley, C., Bagley, H., Huxley, P. & Challis, D. A new version of the Geriatric Depression Scale for Nursing and Residential Home Populations: The Geriatric Depression Scale (Residential) (GDS-12R). International Psychogeriatrics, Vol. 12, No. 2, 2000, pp 173-181.

354

Activity and Affect Indicators of Quality of Life (AAIQOL) (Resident Self-Report – Activity Indicators)

Quality of Life Scale: Activity

I am going to ask you about the sorts of activities you might like to do. For each one, could you tell me if you have had a chance to participate in this activity recently (over the past two weeks).

Also, please tell me how often you did each activity and if you enjoyed it. Interviewer: Scale Few = < 3x/week; Often = > 3x/week

Have you done this in the past 2

weeks?

How often have you done this in the past 2

weeks?

Is this something you enjoy?

No Yes None Few Often No Yes 1. Being outside, going for walks,

enjoying nature. 0 1 0 1 2 0 1

2. Being with pets or animals, watching animals. 0 1 0 1 2 0 1

3. Getting together with family or friends. 0 1 0 1 2 0 1

4. Talking to family/friends on the telephone. 0 1 0 1 2 0 1

5. Going to movies, museums or entertainment. 0 1 0 1 2 0 1

6. Going to church, synagogue, mosque, temple or religious events. 0 1 0 1 2 0 1

7. Going shopping for groceries, clothes etc. 0 1 0 1 2 0 1

8. Going for a ride in the car, train or bus. 0 1 0 1 2 0 1

9. Reading or having stories read to him/her. 0 1 0 1 2 0 1

10. Listening to radio, tapes or watching TV. 0 1 0 1 2 0 1

11. Exercising, playing or watching sports. 0 1 0 1 2 0 1

12. Playing games or cards, doing crosswords or puzzles. 0 1 0 1 2 0 1

13. Doing handiwork or crafts. 0 1 0 1 2 0 1 14. Gardening, plant care, indoors or

outdoors. 0 1 0 1 2 0 1

15. Completing a difficult task 0 1 0 1 2 0 1 Logsdon, R. G., & Albert, S. M. (1999). Assessing quality of life in Alzheimer's disease: Conceptual and methodological issues. Journal of Mental Health and Aging, 5(1), 3-6.

355

Pain Assessment in Advanced Dementia - PAINAD

0 1 2 Score Breathing

Independent of

vocalization

Normal Occasional laboured

breathing. Short period of hyperventilation

Noisy, laboured breathing. Long

period of hyperventilation. Cheyne-Stokes

respirations

Negative vocalizations

None Occasional moan or groan.

Low level speech with a negative or

disapproving quality

Repeated troubled calling out.

Loud moaning or groaning. Crying.

Facial expression

Smiling or inexpressive

Sad. Frightened. Frown.

Facial grimacing.

Body Language

Relaxed. Tense. Distressed Pacing.

Fidgeting.

Rigid. Fists clenched. Knees

pulled up. Pulling or pushing away.

Striking out.

Consolability No need to console

Distracted or reassured by voice

or touch

Unable to console, distract or reassure

TOTAL Varden V, Hurely AC, Volicer, L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. JAMDA 2003: 4:9-15.

356

Appendix 6

Resident clinical record review

Resident Demographics

1. Date: 2. Research Assistant Code: 3. Resident Code

4. Facility Code: 5. Date of Birth: / / 19 6. Gender 1. Male 2. Female

7. Marital Status 1. Married 2. Separated 3. Divorced 4. Widowed 5. De-facto 6. Never Married

8. Dementia Diagnosis

1. Alzheimer’s 2. Vascular 3. Lewy Body 4. Frontal Lobe 5. Younger Onset 6. Unspecified 7. Alzheimer’s &

Vascular 8. Other: 9. Mixed

9. Other or Mixed specified:

10. Source of Diagnosis

1. GP/ Specialist Notes 2. Discharge Summary / ACAT 3. Nurses’ Notes / ACFI 4. Other 5. Multiple Sources

11. Other or Mixed specified:

12.

Date of Diagnosis/Assessment: / /

09.09.9999 = Date Missing / Unknown

(OR) When symptoms were evident: (Check with relative or contact) ( year)

09.09.9999 = Date Missing / Unknown

13. Length of Stay: Years/Months

14. Type of Unit: 1. High Care 2. Low Care 3. Dementia Specific 4. Aging in Place

357

Co morbidity – according to ACFI 15. 23. 16. 24. 17. 25. 18. 26. 19. 27. 20. 28. 21 29. 22. 30. 31. Country of Birth:

32. If Australia: Aboriginal or Torres Strait Islander: 1. Yes 2. No

33. Preferred Language:

34.

English Language Ability: 1. Very Well 2. Well 3. Not Well 4. Not at all 96 = Not Applicable

Applicable to people who stated a preferred language other than English or non verbal. If English is preferred language

35. Main Visitor 1. Partner 2. Daughter 3. Son

4. Relative

5. Friend/Neighbour 6. Community Visitor 7. No Visitor

36. Frequency of Visits 1. Daily or more often 2. 2 – 3 times per week 3. Weekly 4. Fortnightly 5. Monthly 6. Less than monthly 96 – Not applicable if

there are no visitors.

37. Other Visitor 1. Partner 2. Daughter 3. Son 4. Relative 5. Friend/Neighbour 6. Community Visitor 7. No other

visitor 38. Frequency of other visitor 1. Daily or more often 2. 2 – 3 times per week 3. Weekly

4. Fortnightly 5. Monthly 6. Less than monthly 96 – Not applicable if there are no visitors.

39. Highest Level of Education

99=Information missing

1. No formal education

2. Primary School 3. School Certificate (Year 10, Junior, Intermediate)

4. Higher School Certificate (Year 12, Leaving Cert. Matriculation)

5. TAFE/Trade Certificate, Diploma Advanced Diploma

6. Bachelor Degree 7. Postgraduate Degree (Graduate Diploma, Graduate Certificate or higher)

40. Occupation:

99 = Information missing

41. Admission Route: 1. Home 2. Retirement Village 3. Hostel

4. Other HC facility 99 = Information

missing

42. Location Change: 1. Rural to City 2. City to Rural 3. Significant suburb change 96 = Not Applicable

Legend: 95: Unable to answer 96: Not Applicable 97: Refused to answer

98: Not available/unknown 99: Missing/Not collected 9999: Age missing 09.09.9999: Date missing

358

Psychotropic Medications Regular or PRN** Additional Information

1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.

**PRN: It’s regular if it’s given more than 4 days in the week.

359

Aged Care Funding Instrument - ACFI

ACFI 1 Nutrition ACFI 2 Mobility

Nutrition Checklist Assistance level (Tick one per care need)

Mobility Checklist Assistance level (Tick one per care need)

1. Readiness to eat 0 (Independent/NA) 1 (Supervision) 2 (Physical assistance)

1. Transfers 0 (Independent/NA) 1 (Supervision) 2 (Physical assistance) 3 (Mechanical lifting

equipment.) 2. Eating 0 (Independent/NA)

1 (Supervision) 2 (Physical assistance)

2. Locomotion 0 (Independent/NA) 1 (Supervision) 2 (Physical assistance)

ACFI 1 Rating Key

RATING

ACFI 2 Rating Key

RATING

RATING A = 0 in both care needs (readiness to eat and eating) RATING B = 0 in readiness to eat AND 1 in eating RATING B = 1 in readiness to eat AND 0 in eating RATING B = 1 in readiness to eat AND 1 in eating RATING B = 2 in readiness to eat AND 0 in eating RATING C = 2 in readiness to eat AND 1 in eating RATING C = 0 in readiness to eat AND 2 in eating RATING C = 1 in readiness to eat AND 2 in eating RATING D = 2 in readiness to eat AND 2 in eating

RATING A = 0 in both care needs (transfers and locomotion) RATING B = 1 or 2 in transfers AND 0 in locomotion RATING B = 0 in transfers AND 1 or 2 in locomotion RATING C = 1 or 2 in transfers AND 1 in locomotion RATING C = 1 in transfers AND 2 in locomotion RATING D = 2 in transfers AND 2 in locomotion RATING D = 3 in transfers

ACFI 3 Personal Hygiene ACFI 4 Toileting

Personal Hygiene Checklist

Assistance level (Tick one per care need)

Toileting Checklist

Assistance level (Tick one per care need)

1. Dressing and undressing

0 (Independent/ NA) 1 (Supervision) 2 (Physical assistance)

1. Use of toilet 0 (Independent/ NA) 1 (Supervision) 2 (Physical assistance)

2. Washing and drying

0 (Independent/ NA) 1 (Supervision) 2 (Physical assistance)

2. Toilet completion

0 (Independent/NA) 1 (Supervision) 2 (Physical assistance)

3. Grooming 0 (Independent/ NA) 1 (Supervision) 2 (Physical assistance)

ACFI 2 Rating Key

RATING

ACFI 1 Rating Key

RATING

RATING A = 0 in all care needs (dressing and washing and grooming) RATING B = 1 in any of the three care needs (dressing, washing, grooming) RATING C = 2 in any of the three care needs (dressing, washing, grooming) RATING D = 2 in all three care needs (dressing and washing and grooming)

RATING A = 0 in both care needs (use of toilet and toilet completion) RATING B = 1 in one or two care needs (use of toilet, and/ or toilet completion) RATING C = 2 in one care need (use of toilet or toilet completion) RATING D = 2 in both care needs (use of toilet and toilet completion)

360

ACFI 5 Continence

Continence Assessment Summary Tick if yes No incontinence recorded 5.1 3-day Urine Continence Record 5.2 7-day Bowel Continence Record 5.3

You must tick one selection from items 1–4 and one selection from items 5–8. Continence checklist Tick if yes Urinary continence 1 No episodes of urinary incontinence or self-manages continence

devices

2 Incontinent of urine less than or equal to once per day 3 2 to 3 episodes daily of urinary incontinence or passing of urine

during scheduled toileting

4 More than 3 episodes daily of urinary incontinence or passing of urine during scheduled toileting

Faecal continence 5 No episodes of faecal incontinence or self-manages continence

devices

6 Incontinent of faeces once or twice per week 7 3 to 4 episodes weekly of faecal incontinence or passing faeces

during scheduled toileting

8 More than 4 episodes per week of faecal incontinence or passing faeces during scheduled toileting

ACFI 5 Rating Key

RATING

RATING A = yes to (item 1) and (item 5) RATING B = yes to (item 2) or (item 6): You must complete and enclose the Continence Record RATING C = yes to (item 3) or (item 7): You must complete and enclose the Continence Record RATING D = yes to (item 4) or (item 8): You must complete and enclose the Continence Record

361

ACFI 6 Cognitive skills Cognitive Skills Assessment Summary Tick if yes No PAS - CIS undertaken–and nil or minimal cognitive impairment 6.1 Cannot use PAS - CIS due to severe cognitive impairment or unconsciousness or have a diagnosis of 520, 530, 570 or 580

6.2

Cannot use PAS - CIS due to speech impairment 6.3 Cannot use PAS - CIS due to cultural or linguistic background 6.4 Cannot use PAS - CIS due to sensory impairment 6.5 Cannot use PAS - CIS due to resident’s refusal to participate 6.6 Clinical report provides supporting information for the ACFI 6 appraisal

6.7

PAS-CIS Score:

Cognitive Skills checklist Tick if yes 1 No or minimal impairment

PAS-CIS= 0-3 (including a decimal fraction below 4)

2 Mild impairment PAS-CIS=4-9 (including a decimal fraction below 10)

3 Moderate impairment PAS-CIS=10-15 (including a decimal fraction below 16)

4 Severe impairment PAS-CIS=16-21

ACFI 6 Rating Key

RATING

RATING A = yes to (item 1) RATING B = yes to (item 2) RATING C = yes to (item 3) RATING D = yes to (item 4)

ACFI 7 Wandering Wandering Behaviour Assessment Summary Tick if yes No behaviours recorded 7.1 Interfering while wandering 7.2 Trying to get to inappropriate places 7.3

Wandering checklist Tick if yes 1 Problem wandering does not occur or occurs less than two days per

week

2 Problem wandering occurs at least two days per week 3 Problem wandering occurs at least six days in a week 4 Problem wandering occurs twice a day or more, at least six days in a

week

ACFI 7 Rating Key

RATING


362

ACFI 8 Verbal Behaviour Verbal Behaviour Assessment Summary Tick if yes No behaviours recorded 8.1 Verbal refusal of care 8.2 Verbal disruption to others 8.3 Paranoid ideation that disturbs others 8.4 Verbal sexually inappropriate advances 8.5

Verbal behaviour checklist Tick if yes 1 Verbal behaviour does not occur or occurs less than two days per

week

2 Verbal behaviour occurs at least two days per week 3 Verbal behaviour occurs at least six days in a week 4 Verbal behaviour occurs twice a day or more, at least six days in a

week

ACFI 8 Rating Key

RATING


ACFI 9 Physical Behaviour Physical Behaviour Assessment Summary Tick if yes No behaviours recorded 9.1 Physically threatening or doing harm to self, others or property 9.2 Socially inappropriate behaviour impacts on other residents 9.3 Constantly physically agitated 9.4

Physical behaviour checklist Tick if yes 1 Physical behaviour does not occur or occurs less than two days per

week

2 Physical behaviour occurs at least two days per week 3 Physical behaviour occurs at least six days in a week 4 Physical behaviour occurs twice a day or more, at least six days in a

week

ACFI 9 Rating Key

RATING


363

ACFI 10 Depression Symptoms of Depression Assessment Summary Tick if yes No CSD undertaken 10.1 CSD- enter score 10.2 Clinical report provided supporting information for the ACFI 10 appraisal

10.3

Symptoms of depression checklist Tick if yes 1 CSD= 0-8 or no CSD completed

Minimal symptoms or symptoms did not occur

2 CSD= 9-13 Symptoms caused mild interference with the person’s ability to participate in their regular activities

3 CSD= 14-18 Symptoms caused moderate interference with the person’s ability to function and participate in their regular activities

4 CSD= 19-38 Symptoms caused major interference with the person’s ability to function and participate in their regular activities

5 There is a diagnosis or provisional diagnosis of depression completed or reconfirmed in the past twelve months (diagnosis evidence required as per Mental and Behavioural Diagnosis)

6 Diagnosis or provisional diagnosis of depression being sought and will be made available on request within three months of the appraisal date

ACFI 10 Rating Key

RATING

RATING A = yes to (item 1) RATING B = yes to (item 2) RATING B = yes to (item 3) AND NOT (item 5 or item 6) RATING B = yes to (item 4) AND NOT (item 5 or item 6) RATING C = yes to (item 3) AND (item 5 or item 6) RATING D = yes to (item 4) AND (item 5 or item 6)

ACFI 11 Medication Medication checklist Tick if yes 1 No medication 2 Self-managed medication 3 Application of patches at least weekly, but less frequently than daily 4 Needs assistance with daily medications 5 Needs daily administration of a subcutaneous drug 6 Needs daily administration of an intramuscular drug 7 Needs daily administration of an intravenous drug ACFI 11 Rating Key

RATING

RATING A = yes to (item 1) or (item 2) RATING B = yes to (item 3) or (item 4) RATING C = yes to (item 5) or (item 6) or (item 7)

364


Complex health care procedures Tick if yes 1 Blood pressure measurement for diagnosed hyper/ hypotension is a

usual care need AND frequency at least daily (1)

2 Blood glucose measurement for the monitoring of a diagnosed medical condition e.g. diabetes, is a usual care need AND frequency at least daily

(3)

3 Pain management involving therapeutic massage or application of heat packs AND Frequency at least weekly AND Involving at least 20 minutes of one on one staff time in total

(1)

4a Complex pain management and practice undertaken by an allied health professional or registered nurse. This will involve therapeutic massage and/ or pain management involving technical equipment specifically designed for pain management AND Frequency at least weekly AND Involving at least 20 minutes of one on one staff time in total. You can only claim one item 4–either 4a or 4b

(3)

4b Complex pain management and practice undertaken by an allied health professional. This will involve therapeutic massage and/ or pain management involving technical equipment specifically designed for pain management AND Ongoing treatment as required by the resident, at least 4 days per week, AND Involving at least 80 minutes of one on one staff time in total. You can only claim one item 4–either 4a or 4b.

(6)

5 Complex skin integrity management for residents with compromised skin integrity who are usually confined to bed and/ or chair and cannot self-ambulate. The management plan must include repositioning at least 4 times per day.

(3)

6 Management of special feeding undertaken by an RN, on a one-to-one basis, for people with severe dysphagia, excluding tube feeding. Frequency at least daily.

(3)

7 Administration of suppositories or enemas for bowel management is a usual care need. The minimum required frequency is ‘at least weekly.’

(1)

8 Catheter care program (ongoing); excludes temporary catheters e.g. short term post-surgery catheters.

(3)

9 Management of chronic infectious conditions • Antibiotic resistant bacterial infections • Tuberculosis • AIDS and other immune-deficiency conditions • Infectious hepatitis

(6)

10 Management of chronic wounds, including varicose and pressure ulcers, and diabetic foot ulcers.

(6)

11 Management of ongoing administration of intravenous fluids, hypodermoclysis, syringe drivers and dialysis.

(6)

12a Management of arthritic joints and oedema related to arthritis by the application of tubular and/or other elasticised support bandages. Note: The maximum score for claiming both items 12.12a and 12.12b is 3 points.

(1)

12b Management of; • non-arthritic oedema OR deep vein thrombosis by the fitting and removal of compression garments and/or compression bandages, OR • chronic skin conditions by the application and removal of dry dressings and/or protective bandaging. Note: The maximum score for claiming both items 12.12a and 12.12b is 3 points.

(3)

13 Oxygen therapy not self-managed. (3) 14 Palliative care program involving End of Life care where ongoing

care will involve very intensive clinical nursing and/ or complex pain management in the residential care setting.

(10)

15 Management of ongoing stoma care. Excludes temporary stomas e.g. post-surgery. Excludes supra pubic catheters (SPCs)

(1)

365

16 Suctioning airways, tracheostomy care. (6) 17 Management of ongoing tube feeding. (6) 18 Technical equipment for continuous monitoring of vital signs

including Continuous Positive Airway Pressure (CPAP) machine. (3)

ACFI 12 Rating Key

RATING

RATING A = score of 0 (no procedures) RATING B = score 1-4 RATING C = score 5-9 RATING D = score 10 or more

Department of Health & Ageing. Aged Care Funding Instrument (ACFI): User Guide. Canberra: Commonwealth of Australia; 2009.

366

Mini Nutritional Assessment

Sex: Age: Weight (kg): Height (cm):

SCREENING

A. Has food intake declined over the past 3 months due to loss of appetite, digestive problems, chewing or swallowing difficulties?

0 = severe decrease in food intake 1 = moderate decrease in food intake 2 = no decrease in food intake __________

B. Weight loss during the last 3 months 0 = weight loss greater than 3 kg (6.6 lbs)

1 = does not know 2 = weight loss between 1 and 3 kg (2.2 and 6.6 lbs) 3 = no weight loss __________

C. Mobility 0 = bed or chair bound

1 = able to get out of bed / chair but does not go out 2 = goes out __________

D. Has suffered psychological stress or acute disease in the past 3 months? 0 = yes 2 = no __________

E. Neuropsychological problems 0 = severe dementia or depression 1 = mild dementia 2 = no psychological problems __________

F1. Body Mass Index (BMI) (weight in kg) / (height in m2) __________ 0 = BMI less than 19 1 = BMI 19 to less than 21 2 = BMI 21 to less than 23 3 = BMI 23 or greater __________

IF BMI IS NOT AVAILABLE, REPLACE QUESTION F1 WITH QUESTION F2. DO NOT ANSWER QUESTION F2 IF QUESTION F1 IS ALREADY COMPLETED.

F2. Calf circumference (CC) in cm 0 = CC less than 31 3 = CC 31 or greater __________

Screening score (max. 14 points) __________ 12-14 points: Normal nutritional status

8-11 points: At risk of malnutrition

0-7 points: Malnourished

Vellas B, Villars H, Abellan G, et al. Overview of the MNA® - Its History and Challenges. J Nutr Health Aging 2006;10:456-465. Rubenstein LZ, Harker JO, Salva A, Guigoz Y, Vellas B. Screening for Undernutrition in Geriatric Practice: Developing the Short-Form Mini Nutritional Assessment (MNA-SF). J. Geront 2001;56A: M366-377. Guigoz Y. The Mini-Nutritional Assessment (MNA®) Review of the Literature - What does it tell us? J Nutr Health Aging 2006; 10:466-487. Kaiser MJ, Bauer JM, Ramsch C, et al. Validation of the Mini Nutritional Assessment Short-Form (MNA®-SF): A practical tool for identification of nutritional status. J Nutr Health Aging 2009; 13:782-788.

367

Appendix 7

Resident quantitative measures completed by staff informant

Cohen Mansfield Agitation Inventory (CMAI) – Long Form

Cohen-Mansfield J (1986): agitated behaviors in the elderly. II. Preliminary results in the cognitively deteriorated. Journal of American Geriatric Society. 34, 722-727 Cohen-Mansfield, J., Marx, M.S. and Rosental, A.S. (1989). A description of agitation in the nursing home. Journal of Gerontology. 44, M77-M84.

368

Activity and Affect Indicators of Quality of Life - Apparent Emotion

Staff Carer Report Please estimate how frequently this resident has exhibited signs of each type of emotion over the past 2 weeks. Often the resident cannot tell you how he or she feels. We have listed some possible signs of such emotions. If you see no sign of a particular feeling, rate “Never”.

Use “Can’t tell” only when you are really uncertain.

1. Pleasure Signs: Smile, laugh, stroking, touching with an ‘approach’ manner, nodding, singing arm or hand outreach or open arm gesture

Never Only once 2-6 times per week

1-2 Times per day

Several times per day (3+)

Can’t tell

1 2 3 4 5 9

2. Anger Signs: Clenching teeth, grimace, shouting, cursing, berating, pushing, physical aggression


1-2 Times per day


Can’t tell

1 2 3 4 5 9

3. Anxiety Signs: Furrowed brow, Motoric restlessness, repeated or agitated motions, facial expression of worry, sighs, withdrawal from others, tremor, tight facial muscles, calls repeatedly.


1-2 Times per day


Can’t tell

1 2 3 4 5 9

4. Depression Signs: Crying, tears, moans, mouth turned down at corners


1-2 Times per day


Can’t tell

1 2 3 4 5 9

369

5. Interest Signs: Eyes follow objects, intent fixation on object or person, visual scanning, facial, motoric or verbal feedback to others, eye contact maintained, body or vocal response to music, wide angle subtended by gaze, turns body or moves toward person or object


1-2 Times per day


Can’t tell

1 2 3 4 5 9

6. Contentment Signs: Comfortable posture (sitting or lying down), smooth facial muscle, lack of tension in limbs, slow movements, relaxed body stance, lightening of frown or worry line


1-2 Times per day


Can’t tell

1 2 3 4 5 9

370

Activity and Affect Indicators of Quality of Life - Activity Please indicate if the resident has had an opportunity to participate in the following activities in the past 2 weeks. Also, please indicate how often the resident did each activity and if he or she enjoyed it. Scale Few = < 3x/wk; Often = > 3x/wk

Opportunity? Frequency? Enjoys?

No Yes None Few Often No Yes 1. Being outside, going for

walks, enjoying nature. 0 1 0 1 2 0 1

2. Being with pets or animals, watching animals.

0 1 0 1 2 0 1

3. Getting together with family or friends.

0 1 0 1 2 0 1

4. Talking to family/friends on the telephone.

0 1 0 1 2 0 1

5. Going to movies, museums or entertainment.

0 1 0 1 2 0 1

6. Going to church, synagogue or religious events.

0 1 0 1 2 0 1

7. Going shopping for groceries, clothes etc.

0 1 0 1 2 0 1

8. Going for a ride in the car, train or bus.

0 1 0 1 2 0 1

9. Reading or having stories read to him/her.

0 1 0 1 2 0 1

10. Listening to radio, tapes or watching TV.

0 1 0 1 2 0 1

11. Exercising, playing or watching sports.

0 1 0 1 2 0 1

12. Playing games or cards, doing crosswords or puzzles.

0 1 0 1 2 0 1

13. Doing handiwork or crafts.

0 1 0 1 2 0 1

14. Gardening, plant care, indoors or outdoors.

0 1 0 1 2 0 1

15. Completing a difficult task

0 1 0 1 2 0 1

Albert, S. M., Del Castillo-Castaneda, C., Sano, M., & Jacobs, D. M. (1996). Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of the American Geriatrics Society, 44, 1342-1347.

371

Revised Algase Wandering Scale (RAWS) – Long Term Care Version

Please put a check beside the statement that best describes this resident. PERSISTENT WALKING

1. Resident has a reduced amount of spontaneous walking

walks the same or more as others of the same age and ability

walks less than others of same age and ability

walks only minimally, e.g. to go to bathroom

does not walk spontaneously unless prompted

2. Resident has an increased amount of spontaneous walking

walks about the same as others of same age and ability

walks distinctly more than average, but will sit for periods

walks distinctly more than average, rarely sits

walks distinctly more than average, never sits

3. Resident walks about on their own

only if prompted

occasionally during the day

frequently during the day

almost constantly during the day

4. Resident walks around restlessly

never

on a few occasions

regularly but not daily

on a daily basis

5. Resident paces up and down

never

on a few occasions


on a daily basis

6. Resident walks around after awakening but before breakfast

never

less than others of same age and ability

the same as others of the same age and ability

more than others of same age and ability

372

7. Residents walks around between breakfast and lunch

never




8. Resident walks around between lunch and dinner

never




9. Resident walks around after dinner but before bedtime

never




ELOPING BEHAVIOUR

10. Resident attempts to leave their authorised area

never

on a few occasions


on a daily basis

11. Resident runs off

never

on a few occasions


on a daily basis

12. Resident enters unauthorised areas

never

on a few occasions


on a daily basis

373

13. Resident was returned to authorised area after leaving unnoticed

never

only once

more than once, but not often

often

SPATIAL DISORIENTIATION

14. Resident gets lost

never

on a few occasions


on a daily basis

15. Resident cannot locate bathroom without help

requires no help

sometimes requires help

usually requires help

always required help

16. Resident cannot locate dining room without help

requires no help




17. Resident cannot locate own room without help

requires no help




18. Resident walks about aimlessly

always has an identifiable destination/goal

usually has an identifiable destination/goal

sometimes has an identifiable destination/goal

never has an identifiable destination/goal

374

19. Whilst walking alone, resident bumps into obstacles or other people

never

on a few occasions


on a daily basis

VALIDATION ITEMS

20. Resident is a wanderer

definitely not

at times

yes, but it is not a problem

yes, and it is a problem

21. I am

a care worker

an enrolled nurse

a nurse practitioner

a registered nurse

a social worker

a dietitian or dietary aid

a physical therapist

an occupational therapist

an activity therapist

a unit clerk

other

22. I have worked with this resident

only today

today and once before

several times

many times

23. I have attended classes on dementia

never

once

several times

often

375

24. I consider myself

inexperienced with dementia

a beginner in caring for persons with dementia

experienced in dementia care

an expert in dementia care

Are there any comments you would like to make about this resident

Algase DL, Beattie ER, Song JA, Milke D, Duffield C, Cowan B. Validation of the Algase Wandering Scale (Version 2) in a cross cultural sample. Aging and Mental Health. 2004;8(2):133-42.

376

Collateral Source – Geriatric Depression Scale (CS-GDS)

Tick the best answer for how you think the resident/your family member felt last week

1. Are they basically satisfied with life? Yes No 2. Have they dropped many of their activities and interests? Yes No 3. Do they feel that their life is empty? Yes No 4. Do they often get bored? Yes No 5. Are they hopeful about their future? Yes No 6. Are they bothered by thoughts they can’t get out of their

heads? Yes No

7. Are they in good spirits most of the time? Yes No 8. Are they afraid that something bad is going to happen to

them? Yes No

9. Do they feel happy most of the time? Yes No 10. Do they feel helpless? Yes No 11. Do they often get restless and fidgety? Yes No 12. Do they prefer to stay at home rather than going out and

doing new things? Yes No

13. Do they frequently worry about the future? Yes No 14. Do they feel they have more problems with memory then

most? Yes No

15. Do they think it is wonderful to be alive now? Yes No 16. Do they feel downhearted and blue? Yes No 17. Do they feel pretty worthless the way they are now? Yes No 18. Do they worry a lot about the past? Yes No 19. Do they find life very exciting? Yes No 20. Is it hard for them to get started on new projects? Yes No 21. Do they feel full of energy? Yes No 22. Do they feel that their situation is hopeless? Yes No 23. Do they think that most people are better off than they are? Yes No 24. Do they frequently get upset over little things? Yes No 25. Do they frequently feel like crying? Yes No 26. Do they have trouble concentrating? Yes No 27. Do they enjoy getting up in the morning? Yes No 28. Do they prefer to avoid social gatherings? Yes No 29. Is it easy for them to make decisions? Yes No 30. Is their mind as clear as it used to be? Yes No

Chang, Y.-P., Edwards, D. F., & Lach, H. W. (2011). The Collateral Source version of the Geriatric Depression Scale: Evaluation of psychometric properties and discrepancy between collateral sources and patients with dementia in reporting depression. International Psychogeriatrics, 23(6), 961-968.

377

Quality of Life: AD (LTC) (Staff Caregiver version) The following questions are about this resident’s quality of life.

When you think about this resident’s life, there are different aspects, some of which are listed below. Please think about each item, and rate the resident’s current quality of life in each area using one of four words: poor, fair, good, or excellent. Please rate these items based on the resident’s life at the present time (e.g. within the past few weeks). If you have questions about any item, please ask the person who gave you this form for assistance.

Circle responses.

1. Physical health Poor Fair Good Excellent

2. Energy Poor Fair Good Excellent

3. Mood Poor Fair Good Excellent

4. Living situation Poor Fair Good Excellent

5. Memory Poor Fair Good Excellent

6. Family Poor Fair Good Excellent

7. Relationships with people who work here


8. Friends Poor Fair Good Excellent

9. Self over all Poor Fair Good Excellent

10. Ability to keep busy Poor Fair Good Excellent

11. Ability to do things for fun Poor Fair Good Excellent

12. Ability to take care of oneself Poor Fair Good Excellent

13. Ability to live with others Poor Fair Good Excellent

14. Ability to make choices in one’s life Poor Fair Good Excellent

15. Life over all Poor Fair Good Excellent

Comments: ____________________________________________________________________ ____________________________________________________________________ Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510-519.

378

Verbal Behaviour Scale

Resident’s behaviour

No. of times it

occurred during your shift?

How disruptive was this

behaviour?

How aggressive was this

behaviour?

How much nursing time was required

for this behaviour?

How manageable

was this behaviour?

How much did the resident enjoy

himself / herself?

1 = not disruptive at all

to 7 = extremely

disruptive

1 = not aggressive at all

to 7 = extremely

aggressive

1 = required no time at all

to 7 = required a lot of

time

1 = extremely manageable

to 7 = extremely unmanageable

1 = did not enjoy self at all

to 7 = enjoyed self a lot

1. Talks constantly

2. Repeats phrases / words

3. Makes repetitious noise

4. Uses obscene / profane language

5. Screams / yells

6. Makes threats implying physical harm to others

7. Makes threats implying physical harm to self

8. Uses hostile / accusatory language toward others

Beck C, Richards K, Lambert C, Doan R, Landes RD, Whall A, et al. Factors Associated with Problematic Vocalizations in Nursing Home Residents With Dementia. The Gerontologist. 2011 June 1, 2011;51(3):389-405.

379

Appendix 8

Family member demographic questions

Family member demographic questions


QUT Ethics Approval Number 1700000521 1. What is your gender?

Female Male

2. What is your age group?

Less than 20 years 21 to 40 years 41 to 60 years 61 to 80 years 81 years and older

3. In which state or territory do you reside?

ACT NSW NT QLD SA TAS VIC WA

4. What is your relationship to resident?

Spouse Sibling Child Daughter in law/son in law Other family member (please specify) Other (please specify) ________________________________

5. Approximately how long have you known the resident?

years 6. How often are you in touch with the resident (phone calls or visits)?

Every day Several times a week Weekly Fortnightly Monthly Other (please specify)

380

7. How do you normally maintain contact with the resident?

Phone calls Letters Visits to facility Calls to facility regarding residents’ wellbeing Other (please specify)

8. Approximately how much time did you spend with the resident in the last month?

hours

381

Appendix 9

Staff focus group demographic questions

Staff demographic questions


QUT Ethics Approval Number 1700000521

1. What is your gender?

Female Male

2. What is your age group?

Less than 20 years 21 to 40 years 41 to 60 years 61 years and older

3. What is the highest level of education you have completed?

Primary school education High school education – Year 10 (or equivalent) High school education – Year 12 (or equivalent) TAFE College Certificate or Diploma (or Trade Certificate or Diploma) Undergraduate university degree Postgraduate university degree Other (please specify):

4. Which of the following best describes your current position?

Personal Care Assistant Assistant-In-Nursing Enrolled Nurse Endorsed Enrolled Nurse Registered Nurse CNC, Nurse Practitioner, Nurse Unit Manager Dietician or Nutritionist Occupational Therapist Diversional Therapist Physiotherapist Psychologist Welfare Officer /Social Worker Speech Pathologist Other (Please specify):

______________________________________________________

382

5. My current role involves communicating with people with dementia?

Never Sometimes Often Always

6. Please describe your current working hours:

Permanent full time Permanent part time Casual Other (please specify):

7. How long have you worked in aged care (in any capacity)?

Less than 12 months 1 to 2 years 3 to 5 years 6 to 10 years More than 10 years

8. Do you currently work on permanent night duty?

Yes No

9. Have you previously had a personal experience (i.e. not work related) of caring for a person with Alzheimer’s disease or other dementia?

Yes No

10. Have you received education specifically relating to caring for a person with

dementia?

Yes No Not applicable in my role

11. What dementia specific education have you had? (tick all that apply)

None Included in an undergraduate course Formal postgraduate course Dementia specific conference Online course Self-directed learning (e.g. online browsing, reading articles or books) Facility in-service course Other (please specify):

bachelor of health (hons)7.1 research question 1- what are the fundamental attributes of a...

Documents