Primary care and dementia: 2. long-term care at home: psychosocial interventions, information provision, carer support and case management

REVIEW ARTICLE

Primary care and dementia: 2. long-term care at home:
psychosocial interventions, information provision,carer support and case management
Louise Robinson1, Steve Iliffe2, Carol Brayne3, Claire Goodman4, Greta Rait2, Jill Manthorpe5, Peter Ashley6,Esme Moniz-Cook7 and the DeNDRoN Primary Care Clinical Studies Group8

1Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK2Department of Primary Care for Older People, University College London, London, UK3Department of Epidemiology, University of Cambridge, Cambridge, UK4Health Services Research, University of Hertfordshire, Hatfield, Hertfordshire, UK5Department of Social Work, Kings College London, London, UK6Alzheimer’s Society, London, UK7Institute of Rehabilitation, University of Hull, Hull, UK8Dementia & Neurodegenerative Diseases Research Network (DeNDRoN) National Co-ordinating Centre, London & Newcastle, UKCorrespondence to: L. Robinson, E-mail: [email protected]

Copyr

Objective: To write a narrative review of the role of primary care physicians in the long-termcare of people with dementia living at home, with a focus on psychosocial interventions, theprovision of information and carer support, behavioural and psychological symptoms and casemanagement.

Methods: The systematic review carried out for the NICE/SCIE Guidelines was updated fromJanuary 2006, Cochrane Reviews were identified and other publications found by consultations withexperts.

Results: In primary care, the long-term care of people with dementia living at home can be structuredaround several key themes: reframing dementia with a focus on a social model of disability; active use ofinformation sources; supporting carers (caregivers); the management of behavioural and psychologicalsymptoms and a structured case management approach.

Conclusions:Caring for people with dementia in primary care demands the same systematic approach asthe management of other long-term conditions. The systematic follow-up of both people with dementiaand their carers should be integrated into primary care. Reframing dementia, with an emphasis onabilities retained may allow people with dementia and their families to develop more effective copingstrategies; an increase in skill mix within primary care is required to deliver this andmay also improve themanagement of behavioural problems. The potential benefits of person-centred interventions, likeadvance care planning, and alternative models of service delivery, such as a structured, collaborative careapproach which promotes integrated case management within primary care, require further evaluation.Copyright # 2009 John Wiley & Sons, Ltd.

Key words: primary care; dementia; carers; community care; case managementHistory: Received 27 March 2009; Accepted 3 August 2009; Published online 27 November 2009 in Wiley InterScience(www.interscience.wiley.com).DOI: 10.1002/gps.2405

Introduction and methods in the care of people with dementia. This paper

This paper is the second of two reviews (Iliffe et al.,2009) exploring the role of the primary care physician

ight # 2009 John Wiley & Sons, Ltd.

addresses the theme of long-term care for people withdementia living at home and focusses on psychosocialinterventions, the provision of information and carer

Int J Geriatr Psychiatry 2010; 25: 657–664.

658 L. Robinson et al.

support, behavioural and psychological symptommanagement and case management.The same review methods were used as in Part 1

(Iliffe et al., 2009) and build upon the United Kingdom(UK) NICE/SCIE Guidelines systematic review (NICE/SCIE, 2006), with an updated literature search fromJanuary 2006 using the NICE/SCIE criteria andconsultations with experts, including people withdementia and carers. Findings from new studieswere compared with the recommendations of theUK NICE/SCIE guidelines and agreement abouttheir significance reached through discussion. Paperswere only included in this review when consensusabout their implications for the review themeswas reached.

Background

People with dementia live for an average of 5 yearsfrom the emergence of diagnostic symptoms (Xie et al.,2008) and 3.5 years from the time of clinical diagnosis(Bottomley et al., 2008). In the UK, national guidelines(NICE/SCIE, 2006) and the recent National DementiaStrategy (Department of Health, 2009) both propose asystematic approach to the long-term support ofpeople with dementia in the community,to correct theconsistent deficits in care identified by a range oforganisations (Alzheimer’s Disease Society, 1995, 2007;National Audit Office, 2007). The same phenomenonof fragmented care provision is found throughoutmainland Europe (Longley and Warner, 2002; Walde-mar et al., 2007). In this paper we suggest that thesystematic, long-term primary care management ofpeople with dementia living at home can be structuredaround several key themes; reframing dementia, activeuse of information sources, supporting carers (care-givers), understanding and managing behavioural andpsychological symptoms in dementia and a structuredcase management approach. A recently publishedsurvey of community-dwelling people with dementiaand their carers showed a large number of unmetneeds, many of which mapped to the themes in thispaper (Van de Roest et al., 2009).

Psychosocial interventions: reframingdementia

Standard psychological therapies, like CognitiveBehavioural Therapy (CBT), have been shown to helppeople with mild to moderate dementia overcomenegative thinking and depressive withdrawal (Thomp-

Copyright # 2009 John Wiley & Sons, Ltd.

son et al., 1990; Adams et al., 2005). The techniquesused include combinations of reality orientation,memory strategies and cognitive reframing, with afocus on a social model of disability. Cognitivereframing was used to encourage the re-labelling of‘stupidities’ as ‘difficulties’ and catastrophic thoughtswere reformulated into more normalised terms. Forcarers, reframing has been found to play an importantrole in developing their coping strategies, more thansimple problem solving or social support in psycho-educational groups (Lavoie et al., 2005).Psychological therapies may also specifically focus on

(i) promoting cognition including cognitive stimulationtherapies (CST), previously known as reality orien-tation, cognitive training (CT) and cognitive rehabilita-tion (CR) (Clare et al., 2003: Clare and Woods, 2004)and (ii) supporting psychological and social relation-ships, such as reminiscence therapy (Moniz-Cook andManthorpe, 2009a). CR encompasses individual goalrelated strategies to enable peoplewithdementia to learnnew strategies to overcome day to day memorydifficulties. Group-based CST has been shown to beboth clinically effective on cognition and quality of life,and also cost effective (Spector et al., 2003: Knapp et al.,2006). A home-based programme of individual cogni-tive stimulation, involving the carer, had long-termbenefits for cognitive function in the person withdementia and also on carer mental health/well-beingand reduced care home admissions (Moniz Cook et al.,1998). There is currently not a strong evidence base forreminiscence therapy (Woods et al., 2005) although inthe UK a current 8-centre randomised controlled trial isunderway (Woods et al., 2007–2010). It is not yet knownwhether group-based psychosocial support is moreeffective than individualised therapy (Moniz-Cook andManthorpe, 2009a).Unfortunately due to a shortage of such specialist

services, psychological therapies may not be easilyaccessible to people with dementia in primary care.Recently studies have explored the potential of othercommunity-based professionals to deliver psychoso-cial interventions (PSI). Community mental healthnurses trained in a specialist PSI, improved carercoping and behavioural and psychological symptom(BPSD) management (Moniz-Cook et al., 2008a).Another advantage of primary care is the ability of theprimary care physician to develop a therapeuticrelationship with the person with dementia whilstcognition and insight remain relatively intact; he/she isthus well placed to promote positive attitudes to theillness, undertake supportive discussions and ascertainthe need for referral for additional psychologicalsupport (Iliffe et al., 2009).


Primary care and dementia 2: long term care at home 659

Support and information

People with dementia and their carers are still notreceiving sufficient information and information in anacceptable format (Van de Roest et al., 2009). Accurateand up to date information should be available inprimary and secondary care, social care, and voluntaryand community settings (Audit Commission, 2000).Information is most useful if people with dementiahave been involved in its compilation and presentation(Cantley et al., 2003; Pinfold et al., 2004). Peersupport, by people with dementia for people withdementia has the potential to be highly beneficial butmay not be readily available (Department of Health,2009) and evidence on dementia-specific self-manage-ment programmes is still patchy (Mountain, 2006).Family members and other supporters should have

access to information and advice from sources that areaccurate and able to address their individual concerns,which may be different to those anticipated byclinicians (Wald et al., 2003; Van de Roest et al.,2009). People with financial problems may find care-giving particularly difficult and may benefit from earlysignposting to financial or debt advice agencies(Schneider et al., 1999). Family therapy services showpromise in situations where additional psychiatricproblems also exist, but in the past these services wereoften not available for older people (Benbow et al.,1993); we have not found any evidence that thissituation has changed.Voluntary or third sector organisations are a major

source of information for people with dementia andtheir families, but their resources are often limited andcapacity building may be necessary (Manthorpe et al.,2003). Information for children in families where amember has dementia should be available, particularlyfor children and young people who act as carers(Manthorpe, 2005). When working with people fromminority communities, where terms like dementia maynot be widely known, practitioners should develop ordraw on specialist support and publications (Bowes andWilkinson, 2003; Adamson, 2001). In terms ofsupporting people with dementia, multi-componentinterventions including for example, educational ses-sions, group support and practical training, have beenshown to be the most successful for them (Finnemaet al., 2000) and their family carers (Brodaty et al.,2003), potentially reducing patients’ symptoms whilstimproving carer well-being and knowledge. Providingsuch interventions at an early stage, following timelydiagnosis, can reduce both future depression andbehavioural symptoms in people with dementia andcarer burden (Moniz-Cook et al., 2009b).


Support for carers of people with dementia

In the UK, two-third of people with dementia liveindependently in the community whilst one-third livein care homes; around half a million family carersprovide the mainstay of community support to theformer (Alzheimer’s Society, 2007). Carers of peoplewith dementia are more likely to experience depressedmood, to report a higher ‘burden’ and to have worsegeneral health, compared with carers of people withother long-term conditions (Brodaty and Green,2002). Depressed mood in the carer is one of thefactors that determines the move of the person withdementia to residential care (Grasel, 2002). There issome evidence that carers are reluctant to seekprofessional help in such circumstances (Toselandet al., 2002; Brodaty et al., 2005) and when they can nolonger cope (Bruce et al., 2002). In view of the aboveevidence, primary care physicians should endeavour toprovide proactive carer support and to monitor theirhealth and well-being, in addition to caring for theperson with dementia.The experience of carer ‘burden’ is related to the type

of coping strategies used, loneliness and lack ofaccessible support, rather than to ‘objective’ measureof tasks and responsibilities (Graham et al., 1997;Schultz et al., 2002; Bertrand et al., 2006). How carersunderstand the caring role and if they derivesatisfaction and meaning from being a carer alsoinfluence how they respond to offers of support andability to cope over time (Murray et al., 1999). Carersmay grieve or experience loss as their relative losesfunctional and cognitive abilities, and companionship,affection and intimacy are affected (Zarit and Zarit,2008); strategies to help such grief reactions areavailable (Silverberg, 2007).Family carers can be trained and supported to

maintain their own well-being; interventions focussedon counselling and the provision of practical andpsychosocial support have the potential to delaynursing home placement of people with dementia.Community-based occupational therapy, includingcognitive and behavioural interventions, for peoplewith dementia and their carers has been shown to becost effective, increase carer competence, and improvequality of life, mood and the health of both people withdementia and their carers (Graf et al., 2009). Familymeetings that bring everyone together involved incaring to provide family members with copingstrategies are also useful (Zarit and Zarit, 2008).Multi-component interventions and those that

actively engage carers have the most promisingoutcomes and may reduce the likelihood of care home



use (Sorensen et al., 2002; Gitlin et al., 2003;Mittelman et al., 2006; Smits et al., 2007). A meta-analysis of psychosocial interventions for carers ofpeople with dementia revealed that such interventionscan reduce psychological morbidity for carers and helptheir relatives stay at home longer; interventions thatwere intensive, individualised and also included peoplewith dementia, as well as their carers, were the mostsuccessful (Brodaty et al., 2003). A systematic reviewexplored in detail the effects of combined carer/patientinterventions on the health and well-being of bothgroups (Smits et al., 2007). These programmesimproved the general mental health of carers andwere often effective in delaying admission to carehomes; however effects on carer burden and coping,physical health and survival were less conclusive (Smitset al., 2007).Overall the evidence in this area suggests that

clinicians need to tailor interventions to the specificneeds of individual carers and systematically assesscarer needs (Pinquart and Sorenson, 2006, Sorensenet al., 2006). Another sources of support for familycarers is respite or short-break care; although thesebreaks are positively received by carers, the long-termbenefits remain unclear (Mason et al., 2007). Withmore timely diagnosis, the family physician canactively involve carers and people with dementia asevidence confirms that earlier intervention can preventproblems arising at a later stage (Moniz Cook et al.,1998; Whitlatch et al., 2006; Moniz-Cook andManthorpe, 2009a and b).

Advance care planning

People with dementia and their families may wish to beable to plan ahead, so that if in future they cannot makedecisions, their wishes will be known. Documents inwhich an adult records such preferences were originallycalled ‘advance directives’ (ADs) or living wills; theterm advance care planning (ACP) has recently beenintroduced to describe the overall process. ADs firstappeared in the United States (US) in the 1960s andbecame more common after 1990, when the USgovernment introduced the Patient Self DeterminationAct. In addition to an ‘advance directive or decision’stating informed consent to refuse specific treatment ifloss of mental capacity ensues, people can nominateothers to make decisions on their behalf, should theylose mental capacity, in the areas of finance and/orhealth and personal welfare (Power of Attorney). Thelegal framework regarding loss of capacity/competencycan vary between countries, and in the USA between


states. Primary care physicians need access to up todate and accessible information for themselves, theirteams and patients in this area (Alzheimer Europe,2005; Royal College of Physicians, 2009).Systematic reviews have been conducted on the

effectiveness of interventions to promote the use ofACP in general; however most of the evidence is fromNorth America (Hanson et al., 1997; Patel et al., 2004;Ramsaroop et al., 2007; Jezewski et al., 2007; Bravoet al., 2008; Lorenz et al., 2008). Overall these reviewsconclude that there is moderate evidence that multi-component interventions increase the number of ADs,especially those that include one to one discussionsover a period of time with a skilled facilitator.Unfortunately even with such interventions, ADsmay not be disseminated sufficiently well to influencepatient care and health services utilisation (Lorenzet al., 2008). A Cochrane review is currently underwayto assess the effects of interventions to promote the useof ADs in end of life decision-making in all adults(Simon-Lorda et al., 2009).In dementia care, current UK guidance stipulates

that ACP should be discussed with the person withdementia whilst he/she still has the capacity to makedecisions (NICE/SCIE, 2006). The number of ADsmade by people with dementia has historicallytraditionally been lower than for people with cancer(Mitchell et al., 2004). In terms of the impact of ACPon dementia care, several international studies haveshown a reduction in unnecessary hospital admissionsafter ADs have been produced (Molloy et al., 2000;Caplan et al., 2006); however in general evidence onthe effectiveness and acceptability of ACP in dementiacare is limited. Research is urgently needed to addressboth the apparent knowledge transfer gap to facilitatethe integration of ACP into routine clinical practiceand to establish whether ADs, if implemented,influence patient care and choice (Lorenz et al.,2008; Froggatt et al., 2009; Exley et al., 2009).

Management of behavioural and psychologicalsymptoms in dementia in the community

Primary care physicians can play a problem-solvingrole in enabling people with dementia to continue tolive at home (Bridges-Webb, 2002). People withdementia are more likely to be referred for specialistassessment when behavioural problems or carer stressare identified (Bruce et al., 2004; Weiner et al., 2005).Between 20–90% of people with dementia willexperience behavioural and psychological symptoms(BPSD) at some time, particularly in the middle



and later stages (Robinson et al., 2006; Savva, 2009).However while the risks, such as wandering andgetting lost, from such behaviour are often not ashigh as carers fear (Robinson et al., 2007a), they canlead to high levels of carer stress, curtailment of theperson with dementia’s activities and may be thecrucial factor that leads to care home moves (Balestreriet al., 2000).Guidelines urge non-pharmacological management

for such symptoms (NICE/SCIE, 2006), but in thecommunity this is very difficult to achieve. There islittle high-quality evidence for the clinical and costeffectiveness of non-pharmacological treatments(Livingston et al., 2005; Robinson et al., 2006;Robinson et al., 2007b), although research is emergingwhich illustrates the potential of exercise, behaviouralinterventions and educational interventions for carers(NICE/SCIE, 2006). Currently, it is all too easy withinprimary care to prescribe medication, such asantipsychotics, for these symptoms often due to alack of availability of specialist psychological services.Despite widespread concerns over the hazards of usingantipsychotic drugs in dementia (Schneider et al.,2006), research has shown that they can be safelywithdrawn in people with dementia who have takenthem for prolonged periods (Ballard et al., 2008).Advice from the National Institute of Clinical

Excellence provides a helpful framework for primarycare physicians in the management of BPSD indementia beginning with a thorough clinical assess-ment of the patient to exclude treatable causes (NICE/SCIE, 2006). Non-pharmacological approaches shouldbe used where possible and, if available, referral tospecialist nurses or psychological therapists willprovide support and advice for carers (Moniz-Cooket al., 2008b). If the distressing behaviours continue, avariety of drug options can be tried depending on thenature and severity of the behaviour; howeverprescribing anti-psychotic drugs should be time-limited and only reserved for severe and distressingsymptoms after careful assessment of the risks andbenefits of their use and consideration of the type ofdementia (Burns and Iliffe, 2009; O’Brien, 2008).

Case management in primary care: thepotential of a collaborative care model

A consistent and widespread criticism of the carereceived by people with dementia and their families inmany countries is that it is fragmented and rarelyperson-centred (Longley andWarner, 2002; Waldemaret al., 2007; National Audit Office, 2007). Approaches


used in the management of other long-term conditionsmay warrant consideration. A structured collaborativecare model has been shown to be effective forpeople with other long-term conditions, includingdiabetes and late life depression (Ashley, 2008).Collaborative care combines a care/case manager toco-ordinate individual care, who will liaise regularlywith the primary care physician and specialistsecondary care teams and who utilises evidence-basedcare pathways to manage common areas of care.Several studies, largely US-based, have explored the

potential of a structured, collaborative care model indementia care, with either a community nurse or socialworker as the case manager. These have demonstratedimproved quality of care, increased user satisfactionand decreased carer stress (Cherry et al., 2009;Callahan et al., 2006; Vickery et al., 2006; Cherryet al., 2004; Challis et al., 2002). The PREVENT trial inthe US employed a collaborative care interventiondelivered by a nurse (Callahan et al., 2006) withsupervision from a specialist team. It demonstratedsignificant improvements for both people withdementia (increased prescribing of anti-cholinesteraseand antidepressant drugs, fewer behavioural andpsychological symptoms) and family carers (improveddepression scores, higher carer satisfaction ratings);admission to long- term care facilities could not beevaluated due to the limited follow-up. However in oneUK study, a significant number of people withmoderate dementia continued to live in their ownhomes as a consequence of a collaborative careintervention delivered by social workers (Challiset al., 2002). The care manager role would appear tobe a key component over and above guidelinedissemination in enhancing the quality of dementiacare (Cherry et al., 2009; Vickery et al., 2006; Cherryet al., 2004; Challis et al., 2002).The above approaches to the long-term care of

people with dementia living at home adopt a proactive,bio-psychosocial model with greater integrationbetween existing primary, secondary and communityservices. Such innovative service delivery methodsmay also facilitate prescribing of anti-cholinesterasedrugs (Callahan et al., 2006) in countries whereprescribing rates are low, possibly due to restrictionson primary care prescribing (O’Brien et al., 2001). Thepotential of a case manager role in increasingthe responsiveness of primary care services forpeople with dementia requires further evaluation indifferent health care settings; research is ongoing toassess the additional effects of this approach on costeffectiveness and carer competencies (Jansen and vanHout, 2005).


Key points

� In primary care, the long-term care of people withdementia living at home can be structured aroundseveral key themes: reframing dementia, active useof information sources, supporting carers, beha-vioural and psychological symptom managementand a structured case management approach.

� Reframing dementia, with a focus on a socialmodel of disability and emphasis on abilitiesretained, may allow people with dementia andtheir carers to develop more effective copingstrategies. An increase in skill mix within primarycare is required to deliver this.

� The systematic follow-up of both people withdementia and their carers should be formallyintegrated into primary care.

� The ability of interventions and alternativemodels of service delivery in primary care todeliver more integrated and person-centred careto people with dementia and their carers requiresfurther evaluation.


An agenda for research and development inprimary care

Four important research and development questionsfor primary care arise from this review. First, canpsychosocial interventions become incorporated intoroutine primary care practice and retain theireffectiveness for people with dementia and theircarers? Second, how we ensure that approaches likeAdvance Care Planning, which have the theoreticalpotential to deliver more person-centred dementiacare, become integrated into clinical practice? Thirdly,what configuration of primary care services are optimalto support people with dementia living at home?Finally can the benefits of innovative service deliveryapproaches demonstrated in some countries bereplicated in other health care systems?

Conclusions

Logically, the continuing care of people with dementiawho live at home should be provided by those withongoing contact with families and communities i.e.primary care physicians and related community-basedservices, with specialist support from secondary carecolleagues. However, this provision will depend on thequalitative development of primary care, which atpresent is too variable to meet the needs of people with


dementia in a consistent and equitable way. Reframingdementia, to focus on the social model of disabilitywith its emphasis on abilities retained and activelyusing information sources about the course ofdementia and its problems, fit readily in the cultureof primary care. However its application into routinepractice will need a broader and more diverse skill mixthan is currently available in primary care. Supportingcarers and understanding behavioural and psychologi-cal symptoms in people with dementia combinepsychosocial understanding of illness and advanceddiagnostic skills, both of which need enhancement ifthese tasks are to be undertaken by generalists. Inaddition, it is imperative that the systematic follow-upof both people with dementia and their main familycarers should be integrated routinely into primary care.Finally, we need to increase the ability of primary careto deliver more person-centred and customised care topeople and their families living with dementia;evaluation of interventions and alternative models ofservice delivery that demonstrate such characteristicsare urgently required.

Conflict of interest

None known.

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