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Improving Outcomes for Individuals with Hearing Loss and Dementia

Justine Sweet, MSc

Winston Churchill Fellowship Report, 2016

Justine Sweet, Winston Churchill Fellowship Report, 2016 2

Contents

1 Acknowledgements 3

2 Glossary 4

3 Professional Experience 6

4 Executive Summary 7

5 Introduction 9

6 Findings 14

7 Conclusions 28

8 Recommendations 29

9 References 33

10 Appendix 35


1. ACKNOWLEDGEMENTS

My Fellowship has given me the amazing opportunity to nurture the small idea of visiting organisations to meet with professionals, learn of unpublished research and observe innovative practice to improve hearing care for people with dementia and hearing loss. From my travels, it has become clear that although care for individuals is improving, (as understanding of cognition and the ageing process develops), the opportunity for further advancement to enrich quality of life through transformation in detection, diagnosis, treatment and prevention offers great promise. I believe that focused collaboration between the array of advocacy groups, professional organisations, academic research groups, clinical institutions, biotechnology and pharmaceutical companies – some of which I have been so very fortunate to meet during my travels - offers such hope. I am honoured and indebted to the Winston Churchill Memorial Trust, without whose invaluable support and encouragement this life-changing journey to nurture my small idea would not have been possible. My special thanks go to Harj Garcha, Sara Canullo, Tristan Lawrence, Sara Venerus and Julia Weston, whose support before and since my travels has been tremendous. I am grateful to past and present Fellows and my peers for their support, guidance and encouragement in planning my travels. People’s generosity imparting advice, sharing contacts and loaning resources has been overwhelming. Special appreciation is conveyed to Carmen Brewer, Melanie Ferguson, Allan Jones, Cap Lesesne, Sara Mamo, Catherine Palmer and Barbara Weinstein. Although I have individually thanked all my hosts and those patients, carers and communities of practitioners that I met along the way, it would be remiss of me not to formally thank them here for the giving of their time. The generosity, openness and commitment to make a difference so warmly exhibited by every person I have had the pleasure of meeting, has been truly inspirational. I returned to the UK feeling even more enthused and energised than I could ever have dreamed. I would also like to extend my thanks to my work colleagues for covering during my absence; especially Jason Bartlett, James Doran, Patricia Hunt and Jean Moran. Thanks also to Davina Benneworth for editorial assistance, and my friends, patients and family for their encouragement. Especially my husband - I could not have begun this amazing journey were it not for your patience, understanding and companionship! I most sincerely thank you all.


2. GLOSSARY

Abdominal aortic aneurysm A swelling (aneurysm) of the aorta – the main blood vessel that leads away from the heart, down through the abdomen to the rest of the body.

Auditory deprivation A reduction in the auditory system’s ability to process speech due to lack of stimulation.

Age-related hearing loss Gradual loss of acute hearing occurring with advancing age, usually affecting both ears and beginning with reduced sensitivity to higher-pitched sounds.

Alzheimer’s Disease A degenerative brain disease and the most common cause of dementia.

Assistive listening device An object, other than a hearing aid, that helps a person with hearing loss or a voice, speech, or language disorder to communicate.

Care model An overarching framework that provides the structure for the implementation and subsequent evaluation of care consisting of defined core elements and principles.

Care pathway A methodology for the mutual decision- making and organisation of care for a well-defined group of patients for a well-defined period.

Cerebrovascular disease A group of disorders of the heart and blood vessels.

Cognition The mental action or process of acquiring knowledge and understanding through thought, experience, and the senses.

Communication The imparting or exchange of information, ideas, or feelings.

Dementia A syndrome due to disease of the brain, usually of chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning, capability, language and judgement. Consciousness is not impaired. Impairments of cognitive functions are commonly accompanied, occasionally preceded, by deterioration in emotional control, social behaviour or motivation.

https://www.collinsdictionary.com/dictionary/english/impart

https://www.collinsdictionary.com/dictionary/english/exchange

https://www.collinsdictionary.com/dictionary/english/idea


Depression A common mental disorder characterised by sadness, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, feelings of tiredness, and poor concentration.

Diabetic retinopathy Eye disease which can cause blindness if undiagnosed and untreated resulting from complications of diabetes, caused by high blood sugar levels damaging the back of the eye (retina).

Epidemiology research Study and analysis of the patterns, causes, and effects of health and disease conditions in defined populations.

Hearing aid A wearable sound-amplifying medical device intended to compensate for impaired hearing.

Mini Mental Status Examination A 30-point questionnaire that is used extensively in clinical and research settings to measure cognitive impairment.

Pre-frontal cortex The grey matter of the anterior part of the brain’s frontal lobe responsible for regulation of complex cognitive, emotional, and behavioural functioning.

Personal sound amplification device A simple wearable electronic product intended to amplify sounds in certain environments with fewer features and less functionality than a hearing aid.

Population screening A strategy used in a population to identify the possible presence of an as-yet-undiagnosed disease in individuals without signs or symptoms.

Pure tone audiometry A behavioural test used to measure hearing sensitivity. Pure-tone thresholds (PTTs) indicate the softest sound audible to an individual at least 50% of the time.

Quick Speech-In-Noise test A test that measures the ability of an individual to hear in noise.

Socialisation The lifelong process by which individuals acquire the knowledge, language, social skills, and values required for integration and participation into their own society.

Sound field system An amplification system that provides an even spread of sound around a room.

http://www.nhs.uk/Conditions/Diabetes/Pages/Diabetes.aspx


3. PROFESSIONAL EXPERIENCE

Having qualified as a Clinical Physiologist (Audiology modality) in 1989, I consolidated and expanded my knowledge and skill base as I progressed through the levels of the healthcare scientist career framework. Since being awarded an MSc in Advanced Healthcare Practice and Management (with commendation) in 2009, I have undertaken a dual role as an advanced level practitioner and Head of Audiology, Dermatology, ENT, Oral Services & Plastic Services at Kingston Hospital NHS Foundation Trust. In this role I perform complex scientific and technical activities, and provide clinical leadership and direction for seven specialist level diagnostic and rehabilitation services across thirteen hospital and community sites. As part of the Specialist Services Management team I am responsible for the development and implementation of strategic planning, operational performance and the management and coordination of all staff groups. I am committed to supporting our clinical, nursing and administration teams to deliver high quality care, by driving improvement, optimising business processes and leading a collaborative solution-focused, outcome-orientated working environment. I believe clinical alliances, research networks and the use of best evidence-based practices are key to meeting patient expectations and contractual requirements. As clinical lead for Audiology, I am proud to direct the delivery of a service, which is accredited under the Improving Quality in Physiological Measurement Services (IQIPS) programme, to provide the full scope of adult and paediatric practice. This includes care for individuals with complex needs such as those with hearing loss and dementia. I am also a Lead Peer Assessor for the United Kingdom Accreditation Service (UKAS), a Workplace Assessor and Educator for The Ear Institute, University College London and a qualified Performance Coach.


4. EXECUTIVE SUMMARY Our ability to communicate with others, to use words, sounds, signs and behaviours to express ideas, thoughts, feelings or exchange information, is an essential aspect of everyday life. Impairment of this exchange can adversely impact on social functioning and psychological well-being leading to a reduction in quality of life.

Literature reports age-related hearing loss, which is one of the most prevalent chronic conditions affecting older individuals, to result in distorted or incomplete communication leading to embarrassment, frustration, fatigue, reduced working memory, social isolation and withdrawal. The resultant lowering of sensory input can negatively impact on overall psychological health.

Similar behavioural and psychological impact is reported amongst individuals with dementia who have reduced ability to communicate due to their language skills varying from day to day and becoming increasingly difficult as their condition progresses.

The frequent co-occurrence of these chronic conditions can compound communication problems, with untreated hearing loss masquerading as more advanced dementia symptoms limiting daily functioning.

Despite this, there is no national guidance or best care standards for the audiological management of individuals living with hearing loss and dementia.

This report reviews the impact of untreated hearing loss and dementia on communication. In addition, best practices, expert views and data relating to the provision of care and support for people with hearing loss and dementia are shared. Finally, recommendations are made to inform hearing care practices for this vulnerable patient population in the United Kingdom, (UK). The recommendations, which aim to improve quality of life outcomes, acknowledge the need to reinvent hearing care provision in the context of healthy ageing given:

The increasingly higher prevalence rates for age-related hearing loss and dementia as our society matures.

The high cost of unmet communication needs.

Research showing untreated hearing loss is associated with cognitive decline.

Reported high levels of underdiagnosed and undertreated hearing impairment.


Key Priorities and Recommendations

Early intervention should be a priority to potentially better preserve cognitive function and exploit brain plasticity. Individuals should be supported to seek help early and guaranteed access should be a focus in plans for service development.

Integrated care models should be developed to facilitate local teams to work together to ensure that people with dementia and hearing impairment have proper diagnosis through coordination and pooling of resources and expertise.

Individualised hearing care plans should be developed to ensure functional communication needs of care-receivers and care-givers are met.

Flexible, appropriate, timely on-going care and support should be provided.


5. INTRODUCTION

5.1 Background

Adult hearing loss affects over 15 million people in the UK, (Action on Hearing Loss, 2016). In adults under 60 years of age, hearing problems are the third most common chronic health condition after arthritis and cardio-vascular disease (Walling and Dickenson, 2012); and in older adults hearing loss disability dominates in terms of the most common cause of functional limitation, (Davis and Davis, 2009). The World Health Organisation estimates that in the UK adult hearing loss will be in the top ten disease burdens, above diabetes and cataracts, by 2030, (Mather 2006). Hearing loss results in distorted or incomplete communication, the consequences of which can be far-reaching. There is growing epidemiological evidence that untreated hearing loss is related to poor cognitive, physical and mental health outcomes in ageing individuals. Strong correlations are reported with social isolation, (Pronk et al, 2011), falls, (Lin 2012; Viljanen et al, 2013; Ali et al, 2016), depression, (Strawbridge et al, 2000), hospitalisation, (Genther et al, 2013) and mortality, (Genther et al, 2015; Fisher et al, 2014). Most noticeably, evidence shows that hearing loss is associated with incident dementia and accelerated cognitive decline, (Lin et al, 2011). Dementia, defined by the World Health Organisation as ‘a syndrome due to disease of the brain usually of chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning, capability, language and judgement. Consciousness is not impaired. Impairments of cognitive functions are commonly accompanied, occasionally preceded, by deterioration in emotional control, social behaviour or motivation, dementia occurs in Alzheimer’s disease, cerebrovascular disease and other conditions primarily or secondarily affecting the brain’, affects over 676, 000 people in the UK. It is one of the top five underlying causes of death, and estimates are that the number of individuals living worldwide with dementia will double by 2030, (Department of Health, 2015). Lin et al, (2011) show that the degree of severity of hearing loss and the degree and rate of cognitive decline are related. Meaning that individuals with hearing loss have a higher risk of developing dementia. For those with mild hearing loss the risk is double, for those with moderate hearing loss the risk is threefold and for those with severe hearing loss the risk is fivefold. There is also the suggestion that age-related hearing loss could be a precursor for developing dementia. These findings indicate the importance of early identification of hearing loss and offers of rehabilitative support. Contrera et al, (2016) present a conceptual model to propose how common pathology (i.e. age-related neurodegenerative mechanistic pathways), cognitive


resource depletion (resulting from the additional effort required to manage everyday interactions) or long term auditory deprivation of auditory input (through either impoverished input or via the effects of hearing loss on social isolation), may explain these independent associations. Additionally, recent data shows that untreated hearing loss can compromise communication during hospital stays and outpatient consultations. Jorgensen et al, (2016) demonstrate erroneous results on verbally administered cognition Mini Mental Status Examination, (MMSE) testing can impact on medication and care plan recommendations and family decisions for individuals with dementia. There is also a growing body of evidence demonstrating that treating hearing loss with auditory rehabilitation, counselling, education and assistive listening devices can positively impact outcomes. Davis et al, (2007) report greater benefit in terms of less disability and greater independence later in life through earlier hearing aid use and adaptation. Ciorba et al, (2012) report significant improvement in generic and hearing-related quality of life measures. Palmer et al, (1999) and Mamo et al, (2016a) demonstrate symptom-burden reduction in persons with dementia and their care-givers. Given the data demonstrating the implications on individuals, family and society, one would expect ageing individuals to pursue hearing healthcare and amplification, yet we continue to find that only about a third of individuals who need amplification use hearing aids, (Davis A and Davis K.A., 2009). Challenges accessing hearing healthcare are commonly cited as primary reasons why older persons do not pursue hearing loss treatment. Contrera et al, (2016) report uncertainty over where to access hearing care and low clinical emphasis in primary care practice due to a lack of recognition of hearing loss manifestations and awareness of implications. Given the significant burden of diminished cognition on individuals, care-givers, the healthcare system and society, and that hearing loss is one of the few potentially modifiable late-life risk factors for cognitive decline, one would expect healthcare professionals managing the care of older persons to be vigilant about treating hearing loss in their patient population. Unfortunately, they may not. A retrospective records review conducted at Kingston Hospital NHS Foundation Trust revealed that very few patients were asked about their hearing or referred for testing. Stigma, affordability and effectiveness of hearing aid devices are commonly cited as key barriers to accessing specialised hearing care services, (Contrera et al, 2016). However, Rauterkus and Palmer, (2015) found that stigma related to ear-level worn devices has reduced significantly and hearing aid uptake is poor, (at 36%), in the UK where hearing aids are provided free-of-charge, (Davis et al, 2007). Researchers at the University of Pittsburgh have put forward an alternative hypothesis suggesting that hearing loss may be unrecognised by patients, family and healthcare providers. Their unpublished data shows that individuals are not accurate


in self-identifying hearing loss and that family members often don’t identify hearing loss, rather attributing communication problems to other health issues (primarily cognitive decline). This correlates with Knudsen et al, (2000) finding that self-perceived activity limitation may be a key personal determining factor which influences help-seeking, hearing aid uptake, use and satisfaction with hearing aids. Early intervention to reduce the far-reaching impacts of such significant health challenges is advocated for other conditions. The national UK healthcare screening programme offers annual diabetic eye tests to check for early signs of diabetic retinopathy; bowel, cervical and breast screening to detect for early signs of cancer, and abdominal aortic aneurysm screening to men aged 65 years. Additionally, regular dental and eyesight tests are encouraged through national healthcare campaigns. Consequently:

61% of adults in England visit their dentist regularly, (Oral Health Foundation, 2016).

52% of adults surveyed view sight tests as ‘very important’ and 74% of adults in the UK either wear corrective eyewear or have had laser surgery to improve vision, (College of Optometrists, 2013).

There is, however, no national strategy for identifying and managing hearing loss in adults, even though one-half of those aged over 70 years have measurable hearing loss, (Lin et al, 2011). Neither are there national care standards for the effective management of hearing loss and dementia, despite the far-reaching effects caused by the co-occurrence of these conditions in over 316, 000 people in the UK, (Hearing Loss, 2013). 5.2 Aims and Objectives In recognition of my workplace serving an area that has one of the highest life expectancies in England, and consequently double the national average of individuals living with dementia and age-related hearing loss, the purpose of my Fellowship was to:

Source innovation and best-practice evidence to inform the development of policy in the UK.

Compare and contrast clinical practice to gain a broader understanding to inform the development of a local practical framework for my organisation.

Investigate the experience of individuals and their care-givers to identify key features to aid development of care plans that improve hearing health and reduce care-giver burden.

Promote the work of the National Institute for Health Research to enable international collaboration and pooling of knowledge to reduce psychosocial impact.


5.3 Method and Approach

5.3.1 Scope The main aims of my Fellowship were to provide evidence to inform the development of national policy and a local practical framework for my organisation to guide a more efficient and consistent approach to delivering care to individuals with age-related hearing loss and cognitive impairment. 5.3.2 Data collection To aid the evidence collection process, my itinerary was guided by personal experience in my own clinical context, through peer discussion and informed by systematic literature review findings. I undertook my Fellowship travels in two stages. Stage one took me to the east coast of the United States of America in the autumn of 2016. In the spring of 2017, Stage two consisted of a short return visit to the east coast and a visit to the west coast. This allowed me to maximise exposure to learning opportunities and gather evidence from observation of a wide range of clinical practice, research studies and academic programmes. In recognition of the absence of national guidance and the need to provide innovative direction, all forms of evidence gathered prior to, during and after my travels were considered, whether or not these were based on applied clinical research. Consequently, some recommendations made are based on ‘hypotheses’ offered from practical experience, anecdotal reports, informal cohort studies or observation. The effectiveness of these is, as such, unvalidated. 5.3.3 Outcomes Overview Since returning to the UK, I have shared my findings with key local stakeholders to aid multidisciplinary working, with researchers to explore potential to increase the evidence base and with professional peers to influence UK-wide clinical practice. At a local level this has led to the following:

Implementation of direct access referral pathways for the Adult Speech and Language Therapy teams to refer individuals they support who have speech and communication difficulties.

Commitment to work collaboratively with a leading researcher at the National Institute for Health Research, Nottingham Biomedical Research Unit and the local Elderly Care team to establish and evaluate a targeted hearing screening pilot study.


Engagement with the local Diocese leads to facilitate sensory inclusion for people in the local areas with hearing loss (regardless of faith or no faith beliefs) via a community-based hearing care support programme.

Agreement of an action plan with Kingston Hospital NHS Foundation Trust’s Dementia and Delirium Team, following the completion of an environment and facilities assessment. This aims to improve the clinical Audiology environment so it is easier for individuals to navigate and making it appear less alienating.

Engagement with Kingston University Faculty of Arts and Social Sciences Department to explore the collaborative development of hearing health information with faculty members and students.

To influence policy initiatives at a national level, I presented my research findings and recommendations at the 2017 British Society of Audiology Annual Conference. I am also now a member of a British Society of Audiology Working Group tasked with developing a recommended procedure for Audiology Assessment and Rehabilitation of Adults Living with Dementia. At an international level, I have a commitment to undertake an international collaborative research project with researchers at the University of Pittsburgh to better understand key factors that influence hearing aid uptake. I am also exploring opportunities to undertake a research PhD to further enhance my knowledge, inform the evidence-base and facilitate change in UK practice.


6. FINDINGS

6.1 Learning from Stage 1 Travels

6.1.1 Johns Hopkins Bayview Medical Center, Baltimore, Maryland. Clearly a vibrant, academic facility with a commitment to improving the health of the local community through innovation, compassionate care, education and research. Here I was introduced to the Hopkins ElderPlus Program of All-Inclusive Care for the Elderly, (PACE) which supports frail, high-risk older adults to live independently in their own homes whilst receiving medical care and quality of life support services from the Division of Geriatric Medicine and Gerontology. The community-based programme achieves this by providing coordinated individualised care plans which encompass preventative, primary, acute and long-term care; delivered by an interdisciplinary care coordination team who share their observations from and through frequent interaction to ensure medical difficulties are identified earlier and are better managed. For example, anecdotal reports were received from staff and care-givers, of dementia being diagnosed much earlier compared to general population studies suggesting cognitive impairment can be observable several years before diagnosis is made. Earlier recognition assists the mobilisation of support services and therapy reducing the risk of misdiagnosis/treatment and subsequent need for nursing care, (NICE, 2007).

Johns Hopkins Medicine, Bayview Campus Entrance A tour of the facilities of the Day Health Center clearly demonstrated how the co-located medical, nursing, therapy and social care teams provide coordinated health, social, rehabilitative, recreational and personal care services. Transportation to and from the Center is provided, as is medical equipment such as walking aids and communication devices. Personal care and meals are also provided at the Center and in patients own homes. A variety of arts and crafts, restorative exercises, participatory activities and entertainment aim to keep patients active and socially engaged. This includes visits by local school children and outings to dementia- friendly places. In recognition that older adults with hearing loss and dementia may be at risk of further cognitive and functional decline, and that untreated hearing loss can exacerbate negative behaviours, a unique intervention has been developed by the research and clinical care teams working in collaboration. Following direct


observation of everyday interactions by researchers and information gathered from staff focus groups, basic improvements have been made to the care-group environment to aid communication and engagement in social participatory opportunities, (Mamo et al, 2016a). During a tour of the Memory and Alzheimer’s Treatment Center I met with specially trained physicians, nurses, social workers and therapists from the psychiatry, neurology and geriatric medicine teams who provide weekly multidisciplinary memory evaluation clinics, (during which same day neuroimaging, neuropsychological testing and dementia care needs assessments are performed), specialist Frontotemporal Dementia and Young-Onset Dementia clinics. Patients and families benefit from access to the most current approaches and research on diagnosing and treating dementia. Working closely with the Alzheimer’s Disease Research Center (ADRC), the Memory Center supports many types of research. Of particular interest is a new project still in its infancy, which will evaluate the use of the automated pure tone audiometry testing function of the first clinically validated iPad portable audiometer for screening hearing in adults with dementia. 6.1.2 Johns Hopkins Center for Ageing and Health, Baltimore, Maryland. Seeking to provide community-delivered, low-cost hearing assistance to low-income seniors unable to afford the high costs of clinical grade hearing aids, the Access Hearing Healthcare Equality through Accessible Research & Solutions, (Access- HEARS) programme, is an innovative, evidence-based intervention that seeks to address the key barriers to hearing care in the United States of America of affordability and accessibility. Researchers partnered with a community organisation that provides subsidised independent housing for low-income older adults, to recruit older adults with hearing loss to develop personalised management plans with them and their communication partners. All participants received a basic ear examination, hearing screening, a personal sound amplification product, (PSAP), device training and the opportunity to practice communication strategies in their own home. Although PSAPs (available as headphone or ear-piece sets) do not offer the full customisable functionality of clinical grade hearing aids, they do deliver amplified sound to individuals via low-end technology at a significantly reduced cost. Primary outcome measures indicate marked quality of life improvements for participants with 80% feeling more connected with others, and reduced levels of hearing handicap as demonstrated by a mean change from base line Hearing Handicap Inventory for the Elderly (HHIE) scores at 1 and 3 months post intervention. Community health workers with the same cultural background have since been recruited to support the delivery of the programme. User-centered training materials, which integrate constructs from Bandura’s Social Cognitive Theory, are also being developed in partnership with the Maryland Institute College of Art Center for Social Design.


The Access-HEARS strategy has since been adapted to evaluate its effectiveness as a low-risk, non-pharmacological intervention for persons with dementia in a geriatric clinic setting. Findings from a Memory-HEARS feasibility study demonstrate reductions in depressive and neuropsychiatric symptoms, (Mamo et al, 2016b).

Johns Hopkins University Entrance 6.1.3 Towson University and Institute of Well-Being, Baltimore, Maryland. During interviews with Speech-Language Pathology and Audiology faculty staff, alumni and students, I explored the state-supported programmes of graduate and post-graduate study provided by this Higher Education Institute. The programmes (designed around core didactic and clinical courses), incorporate a series of formative and summative assessments to track students’ competency progress across the entire scope of Audiology practice and, similar to education programmes in the UK, deliver a module on ‘Communication and Ageing’. Although this provides an opportunity for students to acquire a basic level of dementia awareness, the learning outcomes do not reflect the level of core skills and knowledge advocated in education and training frameworks for health and care programmes, (Skills for Health, 2015). There is, however, the opportunity for these learning outcomes to be supplemented through exposure to professional learning experiences, delivered through clinical internship placement opportunities and in-service learning activities at the impressive on-campus Institute of Well-Being training facilities where students from different programmes work in teams under the direct supervision of expert faculty staff to deliver clinical care.

Towson University Campus Entrance


6.1.4 The Listening Center, Johns Hopkins Hospital, Baltimore, Maryland. Through discussion with members of the Lin Research Group, I learned how they address research questions that lie at the interface of hearing loss, gerontology, and public health. Using a range of methodologies and multidisciplinary collaboration, their research focuses on epidemiology of hearing loss and healthy ageing. Studies aim to determine the consequence of hearing loss in older adults, the impact of aural rehabilitation and how hearing loss can best be addressed from a societal perspective.

Most recent studies estimating the national prevalence rates of hearing loss and hearing aid use in older adults report 63% of adults over the age of 70 years to have a hearing loss, (Lin et al, 2001). This is higher than previous studies due to non-equivalent average pure tone audiometry calculation comparisons. Similar to other studies, age, sex differences and race were significantly associated with hearing loss - prevalence rates being greater with increasing age, amongst male participants and individuals of white race. The prevalence of hearing aid use varied according to severity of hearing loss: hearing aids being used by 3%, 40% and 76% of individuals with mild, moderate and severe levels of hearing loss respectively. These rates

Johns Hopkins Hospital Entrance compare favourably with those reported in the UK by Lamb and Archbold, (2016), where hearing aids are available free-of-charge, suggesting that accessibility may not be a key barrier limiting hearing care as is reported in other studies, (Mamo et al, 2016c). Most notably, a recent study demonstrated incident all-cause dementia to be independently associated with hearing loss, (Lin et al, 2011). Further study is planned to determine the impact of treating hearing loss on cognitive decline and dementia. 6.1.5 National Institute on Deafness and other Communication Disorders, Bethesda. Where some of my colleagues may argue that the researcher-clinician gap is widening, effectively reducing the opportunity to enhance quality of life because researchers are not addressing the problems that cause difficulty in clinical practice, during my time at this Institute (which is part of the National Institutes of Health and the federal government's focal point for the support of biomedical research), I witnessed the power of collaboration in bridging the gap between research and clinical practice.


This is achieved through the Audiology Unit providing both direct care to the Clinical Center’s patient groups, and functioning as a clinical research laboratory where the Audiologists work with intramural biomedical and behavioural researchers to translate laboratory-conducted study evidence on disordered hearing and balance processes into efficacious real-world clinical interventions and protocols; and, uniquely, clinical observations can lead to testable hypotheses and potentially inform real-world diagnostic and rehabilitative clinical practices.

National Institute of Health Entrance

Of particular interest was a study on Niemann-Pick Disease, (NP). This debilitating, and often fatal, genetic lipid storage disease results in accumulation of fatty deposits in body tissues leading to brain, peripheral central nervous system and organ damage which manifests in difficulty walking, swallowing and sometimes progressive hearing loss. An ongoing study has aided the development of a new treatment approach using Cyclodextrin. Unfortunately, evidence has demonstrated this drug to contribute to hearing loss by damaging the ear. However, through the Audiologists monitoring the hearing of study patients, safe dosage levels and individuals at most risk of hearing loss have been determined. In addition, the Audiologists have developed unique assessment and treatment approaches to improving the quality of life for those patients identified with hearing loss. These include:

a) Flexibility in the scheduling of consultations during times/days of best functioning, allocation of long appointment lengths and incorporation of rest periods to maximise test accuracy.

b) Modification of test technique such as simplifying instructions, use of verbal rather than motor responses during audiometry testing, conditioning to reinforce consistent responses, allowance for slower responses and rest periods.

c) Pre-attendance familiarisation, consistent provision of care from named audiologists and environmental modifications to minimise agitation.

d) Staff awareness of individual’s changing abilities, lifestyle and communication needs to personalise encounters and care plans.

e) Encouraging family member or care-giver’s attendance and participation. f) The use of social artistry to adapt and develop accessible information in a

range of formats to enhance understanding, decision-making and


promote awareness amongst individuals, carers and healthcare professionals.

6.1.6 University of Pittsburgh Medical Center Eye and Ear Institute. Here, in recognition of under-identified and under-treated hearing loss in older adults, researchers have gathered data indicating the accuracy of self-reported age-related hearing loss to be low. Yet to be published data shows that although 35.8% of individuals over 70 years of age whose hearing was screened during inpatient admission had a disabling level of hearing loss (as identified from pure tone audiometry testing), only 17.2% self-reported difficulty hearing. Researchers propose this is likely to be due to low awareness of the manifestations and implications of age-related hearing loss, due to difficulty recognising the slowly progressive nature of onset and/or difficulty recognising hearing loss due to comorbid conditions. A pilot trial - Geriatric Auditory Testing for Everyone, (GATE), is underway to assess the feasibility of an alternative identification approach whereby hearing screening is

offered to older adults accessing elderly care clinics. Such targeted screening could identify individuals with hearing loss who could benefit from the use of hearing aids or other hearing care interventions to address hearing loss. Similar hearing screening programmes have been considered in the UK. However, an appraisal review conducted by Spiby, (2014), concluded that there was a lack of evidence on the effectiveness of screening and that further research was required before a national screening programme for adult hearing loss could be recommended. However, this review only considered published evidence up to December 2012.

The Cathedral of Learning 6.1.7 University of Pittsburgh Medical Center Palliative and Supportive Institute. The importance of integrated multidisciplinary care approaches are emphasised in numerous policy documents and reports, particularly in fields where expertise is limited due to lack of empirical knowledge and therefore national guidance is absent. Integrated team approaches have also developed in response to a shift from


hospital-based acute healthcare to community delivered long-term disease care management, as technological and pharmaceutical advances led to evolving treatments and the population ageing, (Grand et al, 2011; Coulter et al, 2013). Such approaches are reported to provide improved quality of life benefits. Delivered through improved quality of information exchanges and more efficient integrated processes, these approaches result in higher commitment and energy levels, coordination efforts and innovation. This leads to higher levels of workforce well-being and retention rates preserving pooled levels of expertise, (Borrill et al, 2000). As an observer of a well-established weekly lunchtime palliative care case review meeting, I witnessed successful collaboration between numerous clinical specialities

and agencies. Clear leadership was evident from the Chair who demonstrated a sense of optimism and encouraged open, non-judgemental discussion with clear focus. Reflexivity, flexibility and high levels of participation and support were clearly evident as the well-functioning team collaborated to provide blended care. I was even invited to provide comment on the management of a patient known to have untreated hearing loss. The barriers frequently reported to impede creation of such collaborative patient management arrangements, such as clinician resistance, perceived status differences and issues of patient ownership, (Epstein, 2014), were far from evident.

University of Pittsburg Campus 6.1.8 Cumberland Crossing Manor Long Term Care Facility, Pittsburgh. Here I observed a communications facilitator delivering a unique interventional initiative aimed to maximise communication access for residents living in assisted living communities, thereby facilitating healthy ageing and improved quality of life. The Hearing and Communication Assistance for Residents’ Engagement (HearCARE) programme was developed in recognition of reports that, despite the high prevalence of hearing loss amongst individuals living in assisted living facilities, hearing loss is often undertreated or under-recognised and in some cases wrongly considered a normal part of ageing that should be accepted, (McGilton et al, 2016). Communications facilitators, who are integrated into the community care network, deliver day-to-day hearing and communication assistance including:

Support, instruction and encouragement for consistent hearing aid use.

Regular hearing aid maintenance and basic repairs.


Assistive listening device distribution, maintenance and repair including sound-field systems in activities rooms and portable infrared listeners in television lounges.

Ear examinations and referral for earwax removal, hearing assessment and medical management.

Advice for staff and families on the use of clear speech. The programme, (supervised by an audiologist who regularly visits the communities), has demonstrated a range of benefits including increased engagement and enjoyment, improved communication during healthcare exchanges - essential for informed consent and treatment compliance, and reduced staff and family burden.

Cumberland Crossing Manor Entrance

6.1.9 University of Pittsburgh, School of Health and Rehabilitative Sciences. In recognition of the effect language barriers may have on access and delivery of adequate care as a result of poor exchange of information, and reports that show the Mini Mental Status Examination, (MMSE) can grossly underestimate cognitive performance when delivered verbally to individuals with untreated or poorly managed hearing loss, a yet-to-be-published study has been undertaken. This demonstrates physician behaviour relating to the identification of hearing difficulty and referral for management to be poor in outpatient clinics that routinely see and take care of older patients, and during routine surgical admission for adults over the age of 70 years. These findings highlight the need to raise physician awareness of the risk poor communication may have on the quality of healthcare exchanges, and the potential impact miscommunication and misunderstanding may have on consent and decision-making processes. 6.1.10 The Graduate Center City University, New York City. During a networking opportunity with Barbara Weinstein, we acknowledged recent research demonstrating individuals with hearing loss are at greater risk of


developing dementia. In the absence of population screening for dementia in the UK and the United States of America, we discussed the key role audiologists could play in asking individuals if they are worried about their memory and referring them for appropriate assessment when concern is expressed. We also debated the potential employment of the easily administered Quick Speech-In-Noise (QuickSIN) test as a cognitive processing screening tool within the context of Audiology clinics. The test assesses individual ability to perceive speech in noise, which is a complex task requiring integration of working memory and auditory perception skills processed by the pre-frontal cortex (PFC). During ageing the volume and thickness of the PFC declines, adversely affecting speech perception performance, (Wong et al, 2010). One may hypothesise that poorer than expected test performance could provide an indication of central nervous system decline and be used as a prompt to warrant further exploration. A common theme throughout our discussion was the importance of socialisation and the need to ensure that we do all we can to improve individual daily communication interactions. In the absence of any national guidance or strategy, this will require a change in thinking away from a pure objective focus to the marrying of patient needs and ability with diagnostics and rehabilitative interventions to ensure individual communication challenges are understood and every effort made to improve daily function. 6.1.11 CaringKind, New York City. During a tour of the custom-designed facilities of this independent charity organisation, the key role well-planned spaces can have in the provision of care was evident. Practical experiences shared by staff and care-givers indicated how difficult maladaptive behaviours such as distraction, confusion, agitation and social withdrawal can be managed through therapeutic environmental consideration. Moderation of sensory stimulation (by providing optimum lighting and removing overstimulation from unnecessary visual and audible background distractions), the provision of calming, non-institutional atmospheres and consideration of physical access and way-finding are recommended, (Day et al, 2000; NICE, 2007; DOH, 2015b), to manage the confusion frequently experienced from difficulty processing simultaneous sensory stimuli in social settings. Sensory deficits such as hearing and visual impairment could exacerbate this. For example: an individual with dementia and untreated or poorly-managed hearing loss may experience additional confusion, and the reduced intolerance to everyday sounds resulting from recruitment of hair cells in adjacent damaged critical frequency bands may reduce sensory tolerance levels further. Through discussion on the advocacy work undertaken to inform policy, and from observation of educational programmes (designed to increase awareness and improve quality of life of care-givers and individuals), it became apparent that although the use of clear speech and hearing aids is advocated to carers whose family members have a hearing loss, the opportunity of training care-givers as


communication facilitators is not something that has been considered. Additionally, despite carers often predeceasing the family member due to care-giver depression and poor quality of life being highest in this group of care-givers compared to others, there appears minimal focus on the importance of hearing and listening effort on daily communication and behaviour of both the care-giver and the care-receiver. Furthermore, although the outreach programme and the supportive environment and specialised programmes provided at the Early Stage Center acknowledge the benefit of early dementia diagnosis, the same level of emphasis does not appear to be afforded to early hearing loss recognition and management despite the increasing level of research documentation evidencing the benefits of this, (Dawes et al, 2015).

CaringKind: The Harry and Jeanette Weinberg Early Stage Center In recognition of the quality of life improvements delivered by enhanced social interactions, including reduced depression and increased self-efficacy, (Ruthirakuhan et al, 2012), the Connect2culture programme offers a range of socially-engaging leisure activities in supportive public environments. Similar psychosocial well-being outcomes are reported from positive social engagement amongst hearing aid users, (Mulrow et al, 2000), where restricted lifestyle due to social withdrawal is otherwise evident when hearing loss is untreated. Socialisation-based therapies may therefore offer dual benefit. Support group activities can provide such socialisation opportunities and have been shown to reduce the impact of psychosocial difficulties relating to depression, loneliness and feelings of exclusion, (Ruthirakuhan et al, 2012). Additional higher frequency participation in cognitive stimulating activities such as listening to music and singing during reminiscence and relaxation therapy deliver similar quality of life benefits, (Ruthirakuhan et al, 2012). Studies using music as a means to help individuals with dementia enhance new learning are also reported. This exploits reports of music recognition being persevered as dementia disease processes progress. Simmons-Stern et al, (2010), propose persevered music processing may result from the multiple areas of the brain recruited to process sequenced musical stimuli as procedural memories, to decline at a slower rate than the areas of the brain that are typically involved with storing and retrieval episodic memories of particular events such as verbal


information exchange. Research is therefore underway on extending interventional musical therapies to the presentation of information in the form of musical mnemonics or songs to prompt memory retention and recall. 6.2 Learning from Stage 2 Travels Throughout my Stage 1 travels, discussion with practitioners, care-givers and individuals living with dementia and hearing loss, supported my personal clinical experience suggesting hearing interventions can greatly improve quality of life, (QoL) in a cohort of service-users traditionally considered too difficult to test and treat. However, I found little empirical evidence supporting this. My Stage 2 itinerary therefore aimed to inform new inquiries in the evaluation of intervention effectiveness to influence professional practice. Although I was able to gather further anecdotal evidence from direct clinical observation and unpublished learning from communities of practitioners, it became apparent that there is no equity in outcome measures employed for evaluation. This limits comparison of different interventions and the generation of empirical data to inform evidence-based decisions about what interventions promote or inhibit best outcomes. Well-established self-assessment tools traditionally employed in aural rehabilitation to create a profile of individual communication abilities, or gather subjective impressions of communication difficulties and their consequences on social and emotional well-being, can present a challenge to administer to individuals with dementia. This is because they use complex language, require recall of difficulties experienced and judgement – all of which can be affected from the earliest stages of dementia. Additionally, objective validation measures of speech perception require time and compliance to conduct, and may not accurately determine listening capability due to the impact of the disease on speech understanding.

Ronald Reagan UCLA Medical Center Plaza, Los Angeles


Commonly reported measures of treatment affect in cognition studies and care include: 1. Psychosocial approaches which assess domains including measures of mood,

(Lees et al, 2012), behaviour, depression, QoL/satisfaction and overall functioning, (Sheehan, 2012).

2. Measures of functional ability/impairment, including cognition and activities of daily living, (Peterson, 2004; Lees et al, 2012).

3. Outcomes for care-givers such as mood and burden, (NICE, 2010; Sheehan, 2012).

However, there is little consensus on what evaluation scales are best employed. This is because some measures are not sensitive to disease progression and complex care situations where it is difficult to assess the impact of a specific intervention due to so many variables. Some measures take time and experience to administer and for others, disparity between individual and proxy ratings is reported, (Sheehan, 2012).

The House Clinic, Los Angeles Study researchers and clinicians have therefore creatively modified tools or employed surrogate measures. For example, observational recording of awareness, engagement and interaction by trained proxies have been employed as measures of social and emotional function, (Clare et al, 2013; Mamo et al, 2016b). Although practical and acceptable, the validity of these is however unproven. Clare et al, (2016), advocates goal-setting approaches to facilitate and assess the efficacy of interventions in dementia care. The Bangor Goal-Setting Interview Manual aims to facilitate behaviour change to improve functioning or better manage in specific situations. The structured, four-step, conversational format, (which can be administered over several visits), aims to facilitate goal selection and uses simple numerical rating scales to evaluate the extent of benefit from interventions. The Zarit-Burden Interview, (ZBI), is the most extensively evaluated measurement tool of care-giver burden, (Bédard et al, 2001), with the full, short and screening versions having equal correlation, (Stagg and Larner, 2015). The brevity and ease of administration of the 4-item screening version is advocated for application in pressured, everyday clinical practice.


Whilst specific measures are developed that are most relevant and acceptable for application with individuals who have dementia and hearing loss, the following practical advice is offered to clinicians to improve the rigour of clinical practice:

Adoption of person-centred goal-setting scales modified to facilitate a shared individual/care-giver approach to meet changing functional needs as the disease progresses.

Flexible employment of measures informed by personal clinical experience, underpinned by at least a basic familiarity with the relative strengths and weaknesses of each.

Consideration be given to measure the effect of interventions on care-givers using the 4-item ZBI screening interview tool to help inform decision-making.

Manhattan Eye, Ear & Throat Institute, New York City


6.3 Evaluation

Unequivocally, evidence gathered during my Fellowship travels demonstrates that understanding is improving and clear advances are being made in the quality of care provided to individuals with hearing loss and cognitive impairment. Borne out of recognition of the limited success in administering standard care protocols due to the variability of symptomatic manifestations and abilities, clinicians have developed innovative approaches to evaluate the hearing of people with dementia and to provide interventions to optimise communication and maximise meaningful social participation. Although such approaches are largely unvalidated, their employment demonstrates that by investing time and effort in understanding individual capabilities and needs, it is possible to complete audiological assessment and develop interventions that have the potential to:

Encourage more meaningful communication and participation in daily life, aiding inclusivity and independence.

Address the effects of hearing loss on communication partners by enhancing interactions between care-givers and care-receivers, reducing frustrations that may damage relationships and reduce opportunity for social interactions.

Driven by evidence that early identification and intervention is key, and in acknowledgement of the usually inadequate identification of age-related hearing loss, several initiatives offer great promise. These include targeted screening programmes, direct-access support services for at-risk groups and education programmes developed to inform, influence and motivate individuals, care-givers, professionals, institutions and public audiences of the manifestations and implications of hearing loss. Based on projections that the numbers of individuals with age-related hearing loss and those with dementia will continue to increase as the demographic trend towards an ageing population continues, there is great potential to positively impact disease prevalence, quality of life measures and healthcare expenditure. To realise such potential:

Further work is needed to influence national policy initiatives.

Continued emphasis on tailored, integrated care models and practices is key.

Continued collaboration between advocacy groups, professional organisations, academic and clinical research institutions, care providers and biotechnology and pharmaceutical companies is required in order to inform the evidence base.


7. CONCLUSIONS In the absence of qualitative research to inform an evidence-based approach to providing hearing care to individuals with age-related hearing loss and dementia, this report documents all forms of evidence gathered over the course of my travels and outlines potential application to clinical practice and future opportunities for research. The recommendations made in the following section are mapped to the stage of the Audiology care pathway to which they relate, in order to improve an individual’s experience of care as they proceed through their hearing care journey. They reflect key themes including the need to promote access to audiology care, identify individual abilities and coordinate the delivery of a responsive service to best meet individual needs, acknowledging that these may change as the disease progresses.


8. RECOMMENDATIONS

Recommendation 1: Early intervention should be a priority to potentially better preserve cognitive function and exploit brain plasticity. Individuals should be supported to seek help early and guaranteed access should be a focus in plans for service development.

Advocacy groups should work collaboratively to inform public policy with regard to the potential for implementing a national hearing-screening programme for age-related hearing loss.

Service leads should seek to increase awareness of the importance of hearing and the prevalence and implications of hearing loss amongst healthcare professionals managing. and commissioners contracting care of older persons. The introduction of local targeted hearing-screening services for adults at risk of age-related hearing loss should be considered.

Heads of Service should liaise closely with local Dementia and Delirium Leads, Mental Health and Learning Disability teams to ensure registered Audiology practitioners receive dementia-care training that is consistent with their roles and responsibilities.

Higher Education Institutes and Clinical Placement Centres should work collaboratively to ensure the learning outcomes of Education and Training Frameworks for Dementia are incorporated into programmes of study and learning, supplemented through professional learning experiences during clinical placements.


Recommendation 2: Integrated care models should be developed to facilitate local teams to work together to ensure that people with dementia and hearing impairment receive proper diagnosis through coordination and pooling of resources and expertise.

Assessment teams should utilise individual personal stories. Understanding a person’s life history, their social and family circumstances, interests, basic activities of daily living, current level of functioning, how they react to stressful situations and what may help them to relax, can help in connecting with them. This in turn may help reduce anxiety by providing an opportunity to establish factors that may cause agitation and poor compliance so that interventions can be planned to minimise or avoid these. Such customised approaches can be achieved by gathering information from individuals, communication partners, from needs and lifestyle assessments conducted by Elderly Care teams or from the use of the ‘This is me’ tool developed by the Royal College of Nursing and the Alzheimer’s Society.

Service leads should seek to establish multi-disciplinary, complex communication needs clinics to allow hearing loss and dementia to be addressed simultaneously in a combined care plan, ensure appropriate expectation management in relation to the ageing processes and ensure the needs of individuals and communication partners are met.

Researchers and practitioners should work collaboratively to develop innovative diagnostic approaches and tools. Individual personal stories should be exploited to give insight to inform diagnostic approaches. For example: the incorporation of preferred activities for performance responses, and the use of music therapy in the form of passive music engagement (e.g. listening), to reduce agitation and active music engagement (e.g. singing), to aid memory recall. The feasibility of using speech perception testing as an indicator of cognitive processing skills may also be explored.

Heads of Service should ensure an appropriate setting. To ensure safety and minimise stress-levels, consideration should be given to the assessment setting. Good design or simple physical environment modifications should be made to facilities in line with guidelines to support people with dementia and, where possible, residential home visiting services provided.

Managers should seek to support early identification of dementia. There should be a clear local pathway for signposting of adults who appear to have cognitive impairment. Clinical protocols should ensure memory questions are asked during routine consultations and access to dementia services promptly initiated where appropriate.


Recommendation 3: Individualised hearing care plans should be developed to ensure functional communication needs of care-receivers and care-givers are met.

Practitioners should be encouraged to maximise possible long-term protective effects of personal amplification with concerted counselling for individuals and carers, and consideration of multimodal interventions including educational resources, environmental modifications, assistive technology and hearing training. Clear pathways should be developed with local sensory impairment support teams for high priority provision of assisted listening devices.

Leads should ensure individually tailored care plans include a key named audiologist and, where possible, consistent staffing, familiar environments and flexibility to accommodate changing abilities and needs.

Researchers should seek to better understand key factors that influence hearing aid uptake so future care standards and delivery can positively affect increased treatment rates for age-related hearing loss.

Researchers should explore the potential benefit of music-based memory enhancement therapies (such as music mnemonics) to prompt the use of personal hearing aids and reduce functional disability.

Practitioners should exploit evidence-based educational interventions to improve confidence, motivation and treatment compliance. The use of decision-making support software and home-delivered reusable learning objects (RLOs) should be encouraged, to provide hearing health information that can be used by individuals and care-givers as many times as is required to support improved handling skills, and reinforce realistic expectations affected by ageing processes. The use of social artistry to develop visual aids such as Patient Information Leaflets in acceptable formats should be explored.

Practitioners should use a range of outcome measures to provide information

about treatment benefit for individuals and care-givers to ensure changing needs are recognised and met as the condition progresses. Where traditional self-assessment and objective measures cannot be applied, consideration should be given to the adaption of proxy observational and goal-setting approaches.


Recommendation 4: Flexible appropriate, timely on-going care and support delivered by skilled staff whether at home, in hospital or in a care home should be provided.

Service leads should consider the provision of hearing and communication assistance from community facilitators to minimise care-giver burden resulting from the introduction of new hearing interventions into daily routine. The opportunity of training care-givers as communication partners should be considered.

Managers should ensure life-long, on-going formal review of care plans in recognition of the changing communication needs likely to be experienced through the advancing course of dementia disease.

Practitioners should address the impact of hearing loss and dementia on care-giver and care-receiver relationships in a sensitive manner giving information on local support groups and services when indicated. The importance of hearing and listening effort on daily communication and behaviour of both care-giver and care-receiver should be considered, especially in view of care-givers often predeceasing the family member due to care-giver depression and poor quality of life being the highest in this group of care-givers compared to others.

Practitioners should consider the use of music therapy to reduce levels of anxiety during hearing aid fitting consultations and facilitate acclimatisation to hearing aid systems.


9. REFERENCES

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Davis, A. and Davis, K.A. (2009). Hearing Care for Adults 2009: The Challenge of Aging. Proceedings of the Second International Adult Conference. Switzerland: Phonak AG: pp. 23-32.

Dawes, P., Emsley, R., Cruickshanks, K. J., Moore, D. R., Fortnum, H., Edmondson-Jones, M., Munro, K. J. (2015). Hearing Loss and Cognition: The Role of Hearing Aids, Social Isolation and Depression. PLoS ONE, [online]. 10 (3), Available at: http://doi.org/10.1371/journal.pone.0119616. [Accessed: 02/11/2016].

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Grand, J., Caspar, S., MacDonald, S. (2011). Clinical features and multi-disciplinary approach to dementia care. Journal of Multidisciplinary Healthcare 4: pp.125-47.

Knudsen, L.V., Oberg, M., Nielsen, C., Naylor, G., Kramer, S.E. (2010). Factors influencing help seeking, hearing aid uptake, hearing aid use and satisfaction with hearing aids: a review of the literature. Trends in Amplification, 14(3): pp. 127-154.

Lamb, B. and Archbold, S. (2016). Adult Hearing Screening: Can we afford to wait any longer? Action on Hearing Loss: Nottingham.

Lees,R., Fearon,P., Harrison, J.K., Broomfield, N.M., Quinn,T.J. (2012). Cognitive and Mood Assessment in Stroke Research Focused Review of Contemporary Studies. Stroke, 6 (43): pp. 1678-1680

Lin, F.R., Thorpe, R., Gordon-Salant, S., Ferrucci, L. (2011). Hearing Loss Prevalence and Risk Factors Among Older Adults in the United States. Journals of Gerontology. 66A (5): pp. 582-590. Lin, F.R. and Ferrucci, L. (2012). Hearing Loss and Falls Among Older Adults in the United States. Archives of Internal Medicine, 172(4): pp. 369–371. Lin, F.R., Yaffe, K., Xia, J., Xue, O., Harris, T.B., Purchase-Helzner, E., Satterfield, S.T.,

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173201/


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10. APPENDIX 1

Fellowship Itinerary Stage One

Date Venue Topic Contact Designation

23/10/16 Heathrow Airport, London, UK Flight to Washington DC, USA

24/10/16 Johns Hopkins Bayview Center, Baltimore Tour of PACE and Memory Clinic Sasha Pletnikova Research Assistant

Johns Hopkins Center on Aging and Health Memory and Alzheimer’s Treatment Center Esther S. Oh Associate Director of Geriatric Medicine and Gerontology

26/10/16 Towson University Campus, laboratory and clinic tour April Jones AuD student

Towson University Academic Syllabus and research programme Jennifer Smart Associate Professor

Institute for Well-Being, Towson Tour of facilities and clinical observation Tricia Ashby-Scabis Clinical Assistant Professor

Institute for Well-Being, Towson Practical skills training and clinical placements Amanda Kozlowski Audiology Clinical Director

27/10/16 Johns Hopkins University, Baltimore Healthy aging research and policy questions Frank R. Lin Associate Professor

Johns Hopkins University, Baltimore Memory-HEARS pilot study Sara Mamo Audiology Researcher & Postdoctoral Fellow

Johns Hopkins University, Baltimore Obstacles to hearing care research Adele Goman Postdoctoral Fellow

Johns Hopkins Hospital, Baltimore Clinic tour and clinical observation Steve Bowditch Audiologist & Assistant of Otolaryngology

Johns Hopkins University, Baltimore Memory-HEARS programme Jonathan J. Suen Research Audiologist

Johns Hopkins Bayview Center, Baltimore Geriatric grand rounds

28/10/16 Washington DC Travel to Washington DC

29/10/16 Washington DC Reflection and write up

30/10/16 Washington DC Free day



31/10/16 National Institute on Deafness and other Communication Disorders, Bethesda

Staff introductions and tour of facilities Catherine Brewer Chief Research Audiologist

National Institute on Deafness and other Communication Disorders, Bethesda

Participation in staff discussion for the day Catherine Brewer Chief Research Audiologist


Clinical observation Catherine Brewer Chief Research Audiologist


Research projects discussion Kelly King Research Audiologist


Research projects discussion Christopher Zalewski Research Audiologist

01/11/16 Pittsburgh Travel to Pittsburgh

02/11/16 University of Pittsburgh Medical Center Eye and Ear Institute

Tour of Center for Audiology and Hearing Aids and clinical observation

Catherine Palmer Associate Professor and Curriculum Director Audiology Program

University of Pittsburgh Medical Center Palliative and Supportive Institute

Palliative care meeting and tour of facilities

Paula Leslie Director and Professor, Doctor of Clinical Science in Medical Speech-Language Pathology Program

03/11/16 Cumberland Crossing Manor Long Term Care Facility

HearCARE Liz Dervin Communication Facilitator

University of Pittsburgh, School of Health and Rehabilitative Sciences

CHAT program Elaine Mormer Associate Professor and Audiology Clinical Education Coordinator

University of Pittsburgh Medical Center Eye and Ear Institute

Inpatient and Trauma program Lori Zitelli Audiologist Specialist

04/11/16 New York City Travel to New York

05/11/16 New York City Reflection and write up

06/11/16 New York City Free day

07/11/16 Manhattan Eye, Ear and Throat Hospital Tour of facilities and Introduction to service

Cap Lesesne Consultant

The Graduate Center City University Dementia and hearing loss – care-giver burden and assessing outcomes

Barbara Weinstein Professor & Founding Executive Officer of the Doctor of Audiology Program, (Au.D.)

CaringKind Tour of facilities and introduction to services

Jed A. Levine Executive Vice President

08/11/16 Newark Airport Flight to Heathrow, London, UK


Fellowship Itinerary Stage Two

Date Venue Topic Contact Designation

16/05/17 Heathrow Airport, London, UK Flight to New York City, USA

17/05/17 CaringKind Medical and Healthcare Professional Outreach Program and rapid referral program

Niurqui Mariano Manager of Healthcare Outreach

CaringKind Support group provision, coordination and facilitator training

Abigail Nathanson Director of Support Groups

CaringKind Professional training – enhancing communication with persons with dementia

Amy Torres Director of Training

18/05/17 NYU Langone Medical Center Tour of facilities, introduction to services and observation of clinical practice

Susan Walzman Professor of Otolaryngology

19/05/2017 New York City Reflection and write up

20/05/2017 Los Angeles International Airport, USA Flight to Los Angeles, USA

21/05/2017 Los Angeles Free day

22/05/2017 Ronald Reagan UCLA Medical Center Tour of facilities and introduction to services

Alison Grimes Director, Audiology and New Born Hearing Screening

Ronald Reagan UCLA Medical Center Observation of clinical practice Kathryn Sullivan Senior Audiologist

23/05/2017 The House Clinic Tour of facilities and introduction to services

Miriam Maldonado Visiting Physicians’ Program Coordinator

The House Clinic Observation of clinical practice John. W House Founder and Consultant Neurotologist

The House Clinic Observation of clinical practice Jordan Rock Audiologist

24/05/2017 Los Angeles Reflection and write up

25/05/2017 Los Angeles Free day


26/05/2017 Palm Springs Travel to Palm Springs

27/05/2017 Palm Springs Free day



30/05/2017 Los Angeles International Airport Travel to Los Angeles and Flight to Heathrow, London, UK


10. APPENDIX 2

Index of Organisations Visited

Reference Organisation Reference Organisation

1 CaringKind 360 Lexington Ave New York, NY 10017, USA

13 Towson University 8000 York Rd, Towson, MD 21252, USA

2 Cumberland Crossing Manor Long Term Care Facility 9350 Babcock Blvd. Pittsburgh, PA 15237, USA

14 University of Pittsburgh Medical Center Eye and Ear Institute 203 Lothrop St, Pittsburgh, PA 15213, USA

3 Institute for Well-Being 1 Olympic Pl, Towson, MD 21204, USA

15 University of Pittsburgh School of Health and Rehabilitative Sciences Forbes Tower, 3600 Atwood St #4028, Pittsburgh, PA 15260, USA

4 Johns Hopkins Bayview Medical Center 4940 Eastern Ave, Baltimore, MD 21224, USA

5 Johns Hopkins Hospital 1800 Orleans St, Baltimore, MD 21287, USA

6 Johns Hopkins University Baltimore, MD 21218, USA

7 Manhattan Eye, Ear and Throat Hospital 210 E 64th St, New York, NY 10021, USA

8 National Institute on Deafness and other Communication Disorders 31 Center Drive, MSC 2320, Bethesda, MD USA

9 NYU Langone Medical Centre 240 East 38th Street New York, NY 10016

10 Ronald Reagan UCLA Medical Center 757 Westwood Plaza, Los Angeles, CA 90095, USA

11 The Graduate Center City Hospital 365 5th Ave, New York, NY 10016

12 The House Clinic 2100 W 3rd St, 111, Los Angeles, CA 90057, USA

improving outcomes for individuals with hearing loss and ... · hearing care provision in the...

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