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september 29 :: vol 25 no 4 :: 2010 47NURSING STANDARD

learning zoneCONTINUING PROFESSIONAL DEVELOPMENT

Aims and intended learning outcomes

The aim of this article is to provide an overview of the issues relevant in dementia care for nursesworking in any setting. After reading this articleand completing the time out activities you should be able to:

4Understand the impact of dementia on societyand the implications for health resources.

4Outline the signs and symptoms of dementia.

4Explain the importance of promotingwellbeing in dementia.

4Identify the legal and ethical issues aroundmental capacity and consent.

4Describe the therapeutic interventions fordementia.

4Discuss the impact of caring for someone withdementia on the caregiver.

Introduction

With the growth of the ageing population and thepredicted rise in numbers of people experiencingdementia, the need to ensure that nurses in avariety of clinical settings have an understandingof dementia has become more evident. In the nextten years, the number of people aged over 65 willincrease by 15% and the number of people agedover 85 years will increase by 27% in the next tenyears (Department of Health (DH) and CareServices Improvement Partnership (CSIP) 2005).There are 820,000 people with dementia living inthe UK (Luengo-Fernandez et al 2010) and, asdementia affects one person in 20 aged over 65and one person in five over 80 years, this numberis expected to rise (DH and CSIP 2005, Knapp etal 2007). It is estimated that 24 million peopleworldwide have dementia and that this figure willdouble every 20 years to 42 million in 2020 and81 million in 2040 (Ferri et al 2005). Therefore, itis increasingly likely that nurses will be in contactwith someone who has dementia, particularly inacute care settings where 97% of nurses alreadycare for someone with dementia (Alzheimer’s

NS562 Hoe J, Thompson R (2010) Promoting positive approaches to dementia care in nursing. Nursing Standard. 25, 4, 47-56. Date of acceptance: July 27 2010.

Promoting positive approaches to dementia care in nursing

SummaryThis article provides an overview of factors relevant to dementiacare today. The number of people experiencing dementia is increasing and dementia is at the forefront of health policy. The evidence base for person-centred approaches andinterventions in dementia is expanding and nurses are central to implementing these across care settings. This is an exciting and challenging time for dementia care and nursing has a majorrole in leading and developing these changes in practice. Thearticle discusses the importance of wellbeing and the MentalCapacity Act in assessing and caring for people with dementia.Psychosocial and pharmacological approaches to dementia careare described and the need to support carers of people withdementia is emphasised.

AuthorsJuanita Hoe, senior clinical research associate, Research Departmentof Mental Health Sciences, University College London, London, andRachel Thompson, dementia project lead, nursing department, RCN,London. Email: [email protected]

KeywordsCarers, dementia, older people, psychosocial interventions

These keywords are based on subject headings from the BritishNursing Index. All articles are subject to external double-blind peerreview and checked for plagiarism using automated software. Forauthor and research article guidelines visit the Nursing Standardhome page at www.nursing-standard.co.uk. For related articlesvisit our online archive and search using the keywords.

Page 58Dementia multiple choicequestionnaire

Page 59Read Catherine Gibbs’spractice profile on diabetic ketoacidosis

Page 60Guidelines on how towrite a practice profile

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48 september 29 :: vol 25 no 4 :: 2010 NURSING STANDARD

Society 2009). There are particular challenges in acute settings as the environment is often notconducive to nursing people with dementia. The speed and pace of care delivery can increasepatients’ disorientation and confusion, and their needs can go unrecognised (Dewing 2001,Edvarsson et al 2008). It is vital that nurses havean understanding of dementia and the impact this disease has on patients and their families.Nurses should be able to respond moreknowledgeably and effectively to the needs of the person with dementia.

Dementia policy

A number of policies and reports written over the past decade have shaped how dementiaservices have been developed. The Dementia UKreport (Knapp et al 2007) highlighted the growing numbers of people with dementia andrecommended that it become a national healthand social care priority. A more recent report,Counting the Cost (Alzheimer’s Society 2009),suggested that the care of people in acute caresettings needed to be improved, as 47% of carersreported that being in hospital had a significantnegative effect on the health of the person withdementia and 77% were dissatisfied with thequality of dementia care. Moreover, in the samereport, 54% of nurses had not received anytraining on dementia.

In response to concerns raised about the qualityof care in dementia (National Audit Office 2007,2010), England, Scotland, Wales and NorthernIreland are developing strategies to advanceimprovements. All of these strategies are based onextensive consultation with professionals, peoplewith dementia and their family and carers, and haveidentified similar themes:

4Raising awareness and improving understanding.

4Enabling earlier diagnosis and developingspecific treatment or care pathways.

learning zone older people 4Improving quality of care in all settings.

Initial developments include the piloting ofdementia care adviser roles to enable access to care and support following diagnosis; thedevelopment of structured peer support andlearning networks for people with dementia andtheir carers; the launch of a public awarenesscampaign; and consideration of workforcedevelopment needs (DH 2009).

The remit of dementia strategies is far reaching,complex and will require significant investmentand leadership to enable improvements in alldementia care settings. Nurses have a key role inthe care of people with dementia and their families.They are in a good position to support theimprovements outlined in policies.

Defining dementia

Dementia has been defined as ‘an acquired globalimpairment of intellect, memory and personality’(David 2009). It is considered to be a collectiveterm that refers to a clinical syndrome, rather than a specific disease entity. It also describes a variety of pathological processes with commonfeatures. The presence of dementia implies aglobal deterioration in a person’s mental abilitiesdue to underlying brain disease that is usuallyprogressive and chronic in nature (Cooper 1997).

Diagnosing dementia

The diagnosis of dementia demands a broadrange of clinical skills and relies on accurateclinical evidence gained through personal history,medical examination and investigation of theperson (Burns and Hope 1997). Dementia is acomplex disorder and the disease trajectory is not easy to predict (Sampson et al 2008). Despitebeing a degenerative and terminal illness, not allpatients reach the end stages of the disease andsymptoms vary. Furthermore, dementia needs to be distinguished from other conditions whichmay overlap or present similarly, includingdelirium and depression, as both of theseconditions can improve with appropriatetreatment (Adams 1997).

Table 1 outlines symptoms that may present at different stages of dementia. Mental andneuropsychiatric behavioural disturbances affect

Time out 1What do you think are the implications for health and social care in providing services for people with dementia in the future? How can nurses influence developing policy?Consider:4The need for specialist dementia services.4Support for carers and families.4The importance of having a skilled

and knowledgeable workforce.

Time out 2Think about someone you have cared for who had a diagnosis of dementia and list some of the signs and symptoms you observed in that person. How did these factors affect the care that was given?



most people with dementia, irrespective of thecause and stage of the disorder (Lyketsos et al2000). These include psychotic symptoms(delusions and hallucinations), mood disorders(anxiety and depression), behavioural changes(irritability, aggression, restlessness andwandering), and sleep and eating disorders.Increased behavioural disturbances add tocaregiver burden and are associated withadvancing age and poorer cognition (Craig et al2005). Treatment of depression and anxiety indementia can be effective and may help increasefunctional ability, improve quality of life anddecrease caregiver burden (Shankar and Orrell 2000).

Types of dementia

There are two main classification systems for thediagnosis of dementia (World Health Organization1992, American Psychiatric Association 2000(shown in Box 1)). Dementia can be differentiatedinto four common types. Alzheimer’s disease is themost common cause of dementia, characterised bya history of gradual onset and decline in functionincorporating amnesia (loss of memory), apraxia(loss of ability to perform activities), agnosia(inability to recognise and identify objects orpeople) and aphasia (loss of ability tocommunicate verbally) (McKhann et al 1984).Vascular dementia is characterised by cognitiveimpairment resulting from cerebrovascular disease(ischaemia or stroke). It is defined by the presenceof focal neurological signs (perceptual orbehavioural impairments, for example rigidity,

unsteadiness, paralysis), gait disturbance,incontinence and mood lability (Román et al1993). Dementia with Lewy bodies ischaracterised by fluctuating cognition, recurrentvisual hallucinations and spontaneous features of parkinsonism (McKeith et al 1996).Frontotemporal dementia is characterised bybehavioural disorder and affective symptoms:personal neglect, disinhibition, perseveration(repetition of speech or movement) and apathy,with intact visual and spatial abilities (The Lundand Manchester Groups 1994). Alzheimer’sdisease is diagnosed in 50-60% of all cases;vascular dementia in 10-20% of cases; dementiawith Lewy bodies in 10-15% of cases and

Mild

Main symptom is forgetfulness:

4 Dates.4 Names or words. 4 Addresses.4 Shopping items.

Evident problems with recent memory.

Cognitive deficits evident on neuropsychological (memory) testing.

Mood changes as person may be aware of deficits in functioning – the personbecomes increasingly defensive, irritable,anxious or depressed.

No apparent problems with physicalhealth.

Slowed responses and errors may be evident with complex tasks, such as driving.

Moderate

Significant memory deficits:

4Lack of recognition of close relatives.4Loss of familiarity with well known

places or routes.

Disorientation in time and place.

Decline in cognitive ability – impaired decision making, judgement and problemsolving.

Problems with verbal communication.

Personality and behavioural changes.

Disinhibition – inappropriate responses, lack of emotional control.

Abandonment of hobbies and interests.

Difficulty in completing routine tasks, suchas household and self-care tasks.

Evident neglect of personal hygiene and appearance.

Severe

Severe memory deficits.

Disorientation: time, place, person.

Thinking is slow and content is impoverished.

Limited verbal communication – fragmentedspeech or monosyllabic responses, poverty ofspeech, perseveration (repetition of speech ormovement).

Aggression, restlessness and wandering.

Hallucinations and delusions.

Marked decline in physical health.

Incontinence.

Reduced mobility, increased rigidity and frequent falls.

Increased assistance required with activities of daily living.

TABLE 1

Different stages of dementia

The criteria for diagnosis of dementia should include:

1. Memory impairment (impaired ability to learn new information and torecall previously learned information).

2. Impairment of one or more of the following functions:

4 Language – misuse of words or inability to remember and use wordscorrectly (aphasia).

4 Motor activity – unable to perform motor activities even though physical ability remains intact (apraxia).

4 Recognition – unable to recognise objects, even though sensory function is intact (agnosia).

4 Executive function – unable to plan, organise or think abstractly.

3. A clinical course characterised by gradual onset and continuing cognitive decline.

(American Psychiatric Association 2000)

BOX 1

Diagnostic and Statistical Manual of Mental Disorders IVdiagnostic criteria for dementia



wellbeing in dementia is influenced byneurological impairment, physical health and the individual’s biography and personality, aswell as the social environment in which they live.Application of the VIPS model may also be usefulin providing individualised person-centred care(Brooker 2007):

V = A value base that asserts the absolute value of all human lives regardless of age orcognitive ability.

I = An individualised approach, recognisinguniqueness.

P = Understanding the world from the perspectiveof the service user.

S = Providing a social environment that supportspsychological needs.

Memories of the person’s life, achievements andpersonal characteristics give value to the personand their family and help map perceptions of who the person is (Jenkins and Price 1996). Themeasure of a person’s wellbeing is an importantcontributor to their quality of life, as it reflects his or her level of interaction with others andengagement with the environment. Table 2provides a framework for person-centred

frontotemporal dementia in 8-15% of cases (Lobo et al 2000, Stevens et al 2002).

Wellbeing and dementia

The symptoms of dementia are often seen to lead to destruction of the individual through loss of autonomy and personhood. The term‘personhood’ refers to the state or condition ofbeing an individual, and in dementia this is seen to diminish as the disease progresses. It isimportant that personhood is maintained indementia by recognising and respecting theidentity of the person (Kitwood 1997).

While an accurate diagnosis of dementia is essential, the experience of the individual must also be understood. The adoption of person-centred approaches to dementia careallows for a psychological interpretation of the experience of the person with dementia(Miesen 1993, Kitwood 1996). The careprovided in dementia is considered meaninglessif aspects of personhood are diminished and care is delivered in a repetitive and unemotionalway. It is therefore important that the personwith dementia is recognised and accepted as an individual and that a positive self-image is reinforced.

Developing person-centred approaches toassessment are essential in ensuring appropriatecare and treatment are achieved. Kitwood’s(1996) enriched model of care in dementiachallenged the negative view of cognitiveimpairment and is based on the idea that

learning zone older people

Factors affecting dementia

Neurological and/or cognitive impairment.

Health and physical fitness.

Biography and/or life history.

Personality.

Social psychology and environment.

Considerations for assessment

Assess the level and extent of impairment of the person’s abilities to function, plus the type of dementia, if possible.

Assess physical health and consider the person’s previous experience andresponse to ill health.

Establish possible influencing factors such as infection, constipation, medication, pain, eyesight or hearing loss.

Gather information about the person’s biography: family and friends, occupation, interests, likes and dislikes, achievements.

Gather information about person’s personality before the onset of dementia, including coping style, psychological needs and preferences for care.

Assess and consider the impact of interactions with others, both positiveand negative, from the individual’s perspective.

Assess and consider the effect of the environment – the level of noise, signage,colours – on the person, taking into account the person’s preferences.

TABLE 2

A framework for person-centred assessment in dementia

Time out 3Using the VIPS model and the enriched model of care in dementia, think about how you can support person-centred care for people with dementia in your current clinical setting. What additional resources might you need to deliver this?



assessment. It has been adapted from Kitwood’s(1996) enriched model and Brooker’s (2007) VIPSmodel, and considers the impact of the physicalenvironment on the person.

Mental Capacity Act 2005

The introduction of specific legislation for people who lack capacity (DH and CSIP 2005)has marked a significant change in the wayassessment and care for people with dementia areviewed. It should not be assumed that people areincapable of making decisions based solely on adiagnosis of dementia.The act clearly sets out theneed to assess capacity properly and to ensure theperson’s decision making is supported for as longas possible. Although the Mental Capacity Act2005 was implemented in England in 2007, withsimilar legislation being supported in Scotland,Wales and Northern Ireland, its implementationin practice is difficult to assess. Initial reportssuggest that further work is required to ensurethat capacity is understood and supported for this patient group (Manthorpe et al 2008,Thompson 2009).

Nurses working in various settings, includingacute care, emergency departments, mentalhealth, care homes and the community, are oftenrequired to make decisions for, and on behalf of,people with dementia. It is therefore essential thatnurses are able to understand and are supportedin assessing capacity for someone with dementia,enabling decision making, supporting the use ofadvocates and acting in someone’s best interests.

Examples of how the Mental Capacity Act2005 might be applied in practice include:

4Supporting people to take medication or toaccept other medical interventions.

4Helping people to get dressed or accept foodand drink.

4Supporting/assisting people in making adecision about where to live in the future.

4Assisting people in making decisions about end of life care.

First nurses must consider whether the personhas the capacity to make the decision. The actstates that someone is unable to make a specificdecision if ‘he/she has an impairment ordisturbance in the functioning of the brain whichleads to the person being unable to understand,retain, use or weigh up information as part of thedecision making process’. If someone does nothave the capacity to make a particular decision, it is important they are supported to do so in linewith their best interests. A Lasting Power ofAttorney order may have been made, appointingsomeone to act on the patient’s behalf, and thisperson should be involved in the decisionmaking. If there is no Lasting Power of Attorney,efforts should be made to establish what the patient would have wanted, based oninformation gathered from relatives or friendsabout his or her previous preferences or wishes. It is important that any decisions are based on a team discussion and not on the view of oneprofessional or family member. If necessary, areferral can be made to an Independent MentalCapacity Advocate, whose role is to ensure thatdecisions are made in a person’s best interests.

At times, it may be necessary to limit themovements of people with dementia, to protectthem from harm or to provide care that is in theperson’s best interests, for example:

4Using a code on a door to prevent someonefrom leaving a ward or care home.

4Holding someone while he or she has a bloodsample taken or during personal care.

The Deprivation of Liberty Safeguards wereintroduced as an amendment to the MentalCapacity Act 2005 and set out limits for lawfulrestriction and restraint of someone who lackscapacity (DH 2007). Applications are made forthose people in hospitals or care homes who aredeprived of their liberty as a result of restrictionsor restraints being used. Deciding whatconstitutes a deprivation of liberty, however, canbe difficult for practitioners. Thompson (2009)recommends that practitioners consider thefollowing factors for someone with dementia:

4The person, either by words or behaviour,repeatedly challenges the restrictions placed on him or her, for example repeatedly attempting to get out of a locked door or requiring frequent restrictive physical intervention.

Time out 4Consider a time when you were faced with making a choice on behalf of someone with dementia. This might have involved giving someone a wash who was unwilling to accept support, preventing someone who was vulnerable from going outside or giving someone medical treatment against his or herwill. Read the Deprivation of Liberty Safeguards(www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085476) and apply the principlesof best interests to the situation. How would you approach this situation now and how would you involve family and/or friends in thedecision-making process?

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4There are significant restrictions on the person’s contact with family and friends,or the outside world.

4Significant people disagree with the person’splacement in the service or with any restrictionsof their liberty.

Nurses are often involved in decisions about usingrestrictions or restraints for people with dementiawho lack capacity, and should be familiar with thelegal requirements. Nurses also need to recognisewhat is restraint and feel able to challengerestrictive practices in care. Good practice meansdetermining whether care could be provided in aless restrictive manner. This requires a detailedunderstanding of the person and the condition, plus knowledge of evidence-based interventionsand approaches used in dementia care.

Interventions for dementia

While it is important to develop a comprehensiveassessment and understanding of the person with dementia, it is essential that nurses also have knowledge of therapeutic approaches usedin treating them. Until recently research indementia was dominated by the development of pharmacological interventions (Heller and Heller 2003). However, the evidence for non-pharmacological (psychosocial) approachesto dementia care is increasing.

Non-pharmacological interventions includethe provision of therapeutic activities andeducation and psychological support; and there is increasing evidence of the benefits ofpsychosocial and behavioural interventions(Burns 2004). Therapeutic activities areundertaken to maintain or enhance cognitivefunctioning, promote independence, increasequality of life, provide enjoyment and meaningfulactivity, and encourage interaction with othersand the environment (Marshall and Hutchinson2001). Three broad categories of therapeuticinterventions are described: social anddiversional, cognitive, and alternative therapies(Pulsford 1997). Social and diversional activitiesincorporate recreational pursuits, current events, entertainment and physical exercise.Cognitive-based therapies include cognitive

learning zone older people stimulation therapy, reality orientation, lifereview, reminiscence and validation therapy.Alternative therapies include multisensoryenvironments, drama, and art and music therapy.Communication strategies Developing effectiveand supportive communication strategies isessential for nurses working with people withdementia. Communicating with people withdementia can bring many challenges because ofthe various ways in which usual communicationpatterns are affected. Cognitive impairment canresult in poor comprehension, difficultyconcentrating, memory loss, word findingproblems and visual perceptual difficulties, all of which hinder a person’s ability tocommunicate (Sabat and Harré 1992). Inaddition, older people with dementia may havehearing or visual impairments that can affectcommunication. Nurses therefore need to beskilled in a range of strategies that can facilitateand support communication.

General principles such as maintaining eyecontact, speaking distinctly and clearly andpaying attention to non-verbal cues are ofparticular importance for someone whosecommunication is impaired. Other considerationsinclude reducing environmental stimuli (noise),allowing time for the person to respond andrephrasing statements that are not understood.Specific strategies such as breaking sentencesdown into simple phrases, giving one instructionor choice at a time and avoiding open-endedquestions may all help to avoid stress or negativeresponses (Perry et al 2005).

Several therapeutic approaches tocommunication in dementia have been developedover the years including validation therapy,reality orientation and resolution therapy. All of these are useful, but more importantlynurses should assess each individual’scommunication and adapt theirs accordingly.Walker (2007) described the need to develop a ‘toolkit of helpful responses’ to be used indifferent situations with different people thataims to ‘tune into a person’s feelings’. This toolkit requires an understanding of howcommunication can be affected by dementia,knowledge of different approaches and a desire to improve the person’s ability to communicate.Dementia can have a devastating effect oncommunication and it is essential that nurses tryto connect with people in a meaningful way.Cognitive stimulation therapy This is anevidence-based, brief intervention for people withmild-to-moderate dementia (Spector et al 2005).It involves a number of structured group sessionsaimed at actively stimulating thinking and socialengagement for people with dementia. Themesinclude food, childhood, sounds, physicalexercises, famous faces, word games, number

Time out 5List the key skills required for communicating with someone who has dementia. List the opportunities for and challenges to effective communication in your clinical setting. How can these be addressed?



games and current affairs. Cognitive stimulationtherapy has been shown to be effective inimproving memory, judgement and use oflanguage and reasoning, as well as providingbenefits from interacting with others and havingfun (Spector et al 2003).Reminiscence Reminiscence is an opportunity to explore and share memories and get to knowabout other people’s lives. People with dementiaoften have clear memories of past events.Reminiscence therefore draws on their preservedabilities rather than emphasising their difficulties.In this way it can improve communication andconfidence (Woods et al 2009). A lifetime ofexperiences can be explored, from childhood,school days and working life up to the present.Different media such as objects, photographs, roleplay and senses – sound and taste – can be used tostimulate memories. However, not everyone enjoys reminiscence. It is a skilled intervention andmay provoke strong emotions, so it will need to be managed sensitively. Dementia can have asignificant impact on close relationships and thecurrent emphasis is on involving family carers andpeople with dementia in reminiscence activitiesto improve understanding and communicationwithin relationships (Woods et al 2009). The bookRemembering Yesterday, Caring Today details areminiscence activity specifically established forpeople with dementia and family carers(Schweitzer and Bruce 2008).Life story work This is an individual biographicalapproach to understanding the person.Information is gathered about a person’s lifeexperience that can be used to help inform care. It is based on the principles of reminiscence andstorytelling and involves reflection on past lifeevents and present or future wishes. Life story workenhances person-centred care by allowing nurses to make the link between past and present(McKeown et al2010), which can then promotenurses’ understanding of the person’s preferences.Information can be recorded in a range of different formats, including life story books,collages, memory boxes and/or electronic formatswhere photographs or videos can be held. Theformat chosen should be one that best fits theperson and the situation. For example, collagescan be developed as a shared creative activity andare useful in long-stay settings where visual imagescan be accessed easily. Life story books can providemore detail and may be transferred betweendifferent care settings, which is especially useful asthe person’s illness progresses. Memory boxes arebeneficial for those requiring more tactile cues.

Life story work has a number of benefitsincluding promoting increased understanding of the person and supporting the delivery ofperson-centred care (Hansebo and Kihlgren2000, Murphy 2000), as well as improving

relationships between family carers and staff ininpatient settings (Clarke et al 2003). The launchof a leaflet, This is Me, for recording life storyinformation to be used in general hospitalsettings is an example of how such work is being promoted (Alzheimer’s Society 2010).End of life care Dementia is a degenerative anddebilitating disorder that ultimately leads todeath. However, end of life care in dementia is often poor (Sampson et al 2008). To delivergood quality end of life care, significantimprovement is needed in recognising,understanding and including dementia in apalliative care approach (Harrison-Dening and Wharrad 2010). An emphasis on advancedcare planning and partnership working withpalliative care is also advocated (Gibsonet al 2009). Recent initiatives in end of life careinclude adopting best practice tools such as thePreferred Place of Care document (Pemberton et al 2003), the Liverpool Care Pathway(Ellershaw and Wilkinson 2003) and the Gold Standards Framework (Thomas 2003).

There is still much work to be done inrecognising the end of life pathway for people with dementia, because of itsunpredictable trajectory, often described asbeing ‘prolonged’ or ‘dwindling’ (Murray et al2005). As end of life care in dementia develops,clearer pathways may help nurses to plan anddeliver supportive palliative approaches earlier, leading to improved involvement, better symptom control and a more positiveexperience at the end of life. Medication The principal aims of treatment indementia are to improve cognition, mood andbehaviour, thereby promoting optimumfunctional performance and improving quality of life (Small et al 1997). Four medications are currently approved for the treatment of Alzheimer’s disease in the UK:acetylcholinesterase inhibitors – donepezil,galantamine and rivastigmine – and an N-methyl-D-aspartate (NMDA) antagonist,memantine (Overshott and Burns 2005).Acetylcholinesterase inhibitors help delay theprogression of Alzheimer’s disease in people with mild-to-moderate dementia and reduceneuropsychiatric symptoms and functionalimpairment (Clark and Karlawish 2003, Trinh et al 2003); in the UK their use is restricted topeople with moderate dementia (NationalInstitute for Health and Clinical Excellence(NICE) 2009). Memantine has shownimprovements in functional ability and decreasedcare dependence in people with moderate-to-severedementia (Förstl 2000). The benefits ofacetylcholinesterase inhibitors are consideredimportant because neuropsychiatric symptomscontribute to the loss of autonomy, morbidity



learning zone older people predictor of nursing home placement (Brodaty et al 1993). While caring takes place in thecontext of love, duty and obligation, carers canexperience adverse psychological, physical, socialand financial consequences known as caregiverburden (George and Gwyther 1986).

Carers of people with dementia have higherstress levels than other carers and theirpsychological wellbeing influences the abilityto continue caring for the person with dementia(Rosenvinge et al 1998). The availability offormal support from health and social servicesand informal support from family and friendscan be of benefit in reducing caregiver burden, although increased use of services is associated with higher levels of stress in carers (Jerrom et al 1993).

Psychosocial interventions and support forcarers of people with dementia are paramount inreducing caregiver stress and burden, and includeeducation and information, skills training,support groups and counselling (Burns 2004).The benefits of peer support include sharedexperiences and reduced isolation, which mostcaregivers find helpful (Zarit et al 2004). The BMA (2009) identified the needs of carers to be: respite, reliable and satisfactory services,information, recognition of their role andcontribution, care of their own health andsomeone to talk to.

Quality of life

Quality of life is an established outcomemeasure for people with dementia as well as in assessing disease impact (Hoe et al 2010). The course of the disease is not straightforwardand dementia can have significant psychologicaland social consequences. Measuring quality oflife can assess the extent to which dementia isdisabling and indicate the anticipated benefitsof slowing disease progression or delaying its onset. As a wide range of therapeuticinterventions and possible outcomes areavailable for the management of dementia,quality of life offers a common language forevaluating the effectiveness of treatment (Mack and Whitehouse 2001).

Quality of life in dementia is still a relativelynew concept. In the context of dementia it hasbeen defined as ‘the integration of cognitivefunctioning, activities of daily living, socialinteractions and psychological wellbeing’(Whitehouse et al 1997). Psychologicalwellbeing is the most important element of quality of life measurement in dementia (Walker et al 1998). Measures of quality of life are fundamental in reflecting the effect of the disease on the individual and on thoseproviding care for the person with dementia.

and need for long-term care placement (Trinh et al 2003). The guidelines for prescribing acetylcholinesterase inhibitors were revised as their cost effectiveness wasquestioned, and improved evidence of how they affect quality of life is needed (Overshottand Burns 2005, NICE 2009). Simpson et al(2005) reported that acetylcholinesteraseinhibitors have shown benefits for people with dementia both in and outside of theestablished criteria and that stopping themincreased the risk of mortality and led to amarked deterioration in patients.

Psychosocial interventions are consideredthe preferred option and pharmacologicaloptions should be introduced only whenpsychosocial treatments prove ineffective (Small et al 1997). Antipsychotic medications are a common treatment for the reduction of behavioural disturbance in dementia (Smith and Beier 2004).

However, an increased risk of cerebrovascularadverse events has been associated withantipsychotic use in people with dementia and their prescription is now limited (Smith and Beier 2004, Overshott and Burns 2005).Acetylcholinesterase inhibitors reduceneuropsychiatric symptoms in Alzheimer’sdisease and, although their use as an alternativetreatment for the management of behaviouraldisturbances is indicated, they are not usedroutinely for this purpose in the UK (Clark andKarlawish 2003, Trinh et al 2003).

Recognition of carers’ needs

The majority of people with dementia live in the community and are cared for by familymembers (Rabins 1998, British MedicalAssociation (BMA) 2009). Carers are essential in supporting people with dementia to remain in the community, and lack of a caregiver is a

Time out 6A 78-year-old man with dementia is admitted to hospital with a urinary tract infection and is increasingly irritable and restless. On admission you observe his wife to be upset and anxious, and she says she cannot cope. How would you assess her needsand ability to cope with caring? Think abouthow you could include the patient’s wife inassessment and care planning to meet both theperson with dementia and the carer’s needs.



Conclusion

Meeting the needs of people with dementia and supporting their families can be rewardingfor nursing staff. Having a sound knowledgeand skill base and understanding the issuesrelevant to dementia is key. The broad scope of the disease means it is not possible to discussall aspects currently affecting this patient group. This article does, however, provide anoverview of factors that are relevant todementia care today.

The number of people experiencing dementiais increasing and dementia is now at theforefront of health policy. The evidence base forperson-centred approaches and interventions indementia is expanding and nurses are central to

implementing these. Although care in dementiais improving, considerable progress is stillneeded. Nurses have a responsibility to ensure that they keep abreast of the changes and that improvements are integrated into the clinical setting. This is an exciting andchallenging time for dementia care and nurseshave a major role in leading and developingthese changes in practice NS

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Cooper B (1997) Epidemiology of the dementias of late life. InJacoby R, Oppenheimer C (Eds)Psychiatry in the Elderly. Secondedition. Oxford University Press,Oxford, 439-453.

Craig D, Mirakhur A, Hart DJ,McIlroy SP, Passmore AP (2005)A cross-sectional study of neuropsychiatric symptoms in 435 patients with Alzheimer’s disease. American Journal ofGeriatric Psychiatry. 13, 6, 460-468.

David AS (2009) Basic concepts in neuropsychiatry. In David AS,Fleminger S, Kopelman MD,Lovestone S, Mellers JDC (Eds)Lishman’s Organic Psychiatry: A Textbook of Neuropsychiatry.Fourth edition. Wiley-Blackwell,Oxford, 3-28.

Department of Health (2009)Living Well with Dementia: A National Dementia Strategy.The Stationery Office, London.

Department of Health, Care Services ImprovementPartnership (2005) Everybody’sBusiness. Integrated Mental HealthServices for Older Adults: A Service

Development Guide. The StationeryOffice, London.

Dewing J (2001) Care for olderpeople with a dementia in acutehospital settings. Nursing OlderPeople. 13, 3, 18-20.

Edvardsson D, Winbald B,Sandman PO (2008) Person-centred care of people withsevere Alzheimer’s disease: currentstatus and ways forward. TheLancet Neurology. 7, 4, 362-367.

Ellershaw J, Wilkinson S (Eds)(2003) Care of the Dying: APathway to Excellence. OxfordUniversity Press, Oxford.

Ferri CP, Prince M, Brayne C et al(2005) Global prevalence of dementia: a Delphi consensus study.The Lancet. 366, 9503, 2112-2117.

Förstl H (2000) Clinical issues incurrent drug therapy for dementia.Alzheimer Disease & AssociatedDisorders. 14, Suppl 1, S103-S108.

George LK, Gwyther LP (1986)Caregiver well-being: a multidimensional examination of family caregivers of dementedadults. The Gerontologist. 26, 3,253-259.

Gibson L, Hughes J, Jordan A et al (2009) The Power ofPartnership: Palliative Care inDementia. National Council forPalliative Care, London.

Hansebo G, Kihlgren M (2000)Patient life stories and current situation as told by carers in nursinghome wards. Clinical NursingResearch. 9, 3, 260-279.

Harrison-Dening K, Wharrad J(2010) Admiral nursing: respondingto the call for better end of life care

for people with dementia. Signpost:Journal of Dementia and MentalHealth Care of Older People. 14, 3,27-31.

Heller T, Heller L (2003) Firstamong equals: does drug treatmentfor dementia claim more than its fairshare of resources? Dementia. 2, 1, 7-19.

Hoe J, Orrell M, Livingston G(2010) Quality of life measures inold age. In Abou-Saleh MT, KatonaCLE, Kumar A (Eds) Principles andPractice of Geriatric Psychiatry.Third edition. In press.

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Kitwood T (1997) DementiaReconsidered: The Person ComesFirst. Oxford University Press,Buckingham.

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References

Time out 7Now that you have completed the article you might like to write a practice profile. Guidelines to help you are on page 60.



learning zone older people

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Marshall MJ, Hutchinson SA(2001) A critique of research on theuse of activities with persons withAlzheimer’s disease: a systematic literature review. Journal ofAdvanced Nursing. 35, 4, 488-496.

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c) Deprivation of Liberties Safeguards ❏

d) Safeguarding Children andVulnerable Adults ❏

9. A patient must be assumed to havecapacity unless:a) He or she makes an unwise ❏

decision ❏b) It is established that he or she

lacks capacity ❏c) He or she has dementia ❏d) He or she lives in a care home ❏

10. Recurrent visual hallucinationsare most likely to be caused by:a) Vascular dementia ❏b) Alzheimer’s disease ❏c) Frontotemporal dementia ❏d) Dementia with Lewy bodies ❏

This self-assessment questionnairewas compiled by Sonia Davies

The answers to this questionnaire will be published on October 13

1. How many people worldwide arepredicted to have dementia by 2020?a) 2.4 million ❏b) 4.2 million ❏c) 24 million ❏d) 42 million ❏

2. Dementia is:a) A clinical syndrome rather than

a specific disease ❏b)A variety of pathological

processes with common features ❏

c) Usually progressive and chronic ❏d) All of the above ❏

3. Alzheimer’s disease:a) Is the rarest cause of dementia ❏b) Has a rapid onset ❏c) Incorporates amnesia, apraxia,

agnosia and aphasia ❏d) Results from cerebrovascular

disease ❏

4. Which of the following is a sign of moderate dementia?a) Disinhibition ❏b) Incontinence ❏c) Delusions ❏d) Wandering ❏

5. Disinhibition is most likely to becaused by:a) Alzheimer’s disease ❏b) Vascular dementia ❏c) Dementia with Lewy bodies ❏d) Frontotemporal dementia ❏

6. Which intervention for mild-to-moderate dementia iseffective at improving memory?a) Reminiscence ❏b) Physical exercise ❏c) Cognitive stimulation therapy ❏d) Life story work ❏

7. In which situation might theMental Capacity Act 2005 beapplied?a) Helping someone to get dressed ❏b) Decisions about end of life care ❏c) Supporting someone to take

medication ❏d) All of the above ❏

8. Where are lawful restraint limitsfor someone who lacks capacity set out? a) Safeguarding Vulnerable

Groups Act ❏b) Protection of Vulnerable Adults ❏

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