End of life care for community dwelling older people with dementia: an integrated review

REVIEW ARTICLE

End of life care for community dwelling older people withy
dementia: an integrated review
Claire Goodman1, Catherine Evans1, Jane Wilcock2, Katherine Froggatt3, Vari Drennan4, Elizabeth Sampson5,Martin Blanchard5, Maggie Bissett6 and Steve Iliffe2

1Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK2Department of Primary Care and Population Sciences, University College London, London, UK3Lancaster University, Lancaster, UK4St Georges Medical School and Kingston University, Faculty of Health and Social Care Sciences, University of London, London, UK5Department of Mental Health Sciences, University College London, London, UK6Camden Primary Care Trust, Camden and Islington Palliative Care Team, London, UKCorrespondence to: Professor C. Goodman, E-mail: [email protected]

yThis manuscript is original unpublished work and has not been being submitted for publication elsewhere.

Copyr

Objective: To review the evidence for end-of-life care for community dwelling older people withdementia (including those resident in care homes).

Design:An integrated review synthesised the qualitative and quantitative evidence on end-of-life care forcommunity dwelling older people with dementia. English language studies that focused on prognosticindicators for end-of-life care, assessment, support/relief, respite and educational interventions forcommunity dwelling older people with dementia were included. A user representative group informeddecisions on the breadth of literature used. Each study selected was screened independently by tworeviewers using a standardised check list.

Results: Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying withdementia at home. Six studies included direct evidence from people with dementia. The studies groupedinto four broad categories: Dementia care towards the end of life, palliative symptom management forpeople with dementia, predicting the approach of death for people with dementia and decision-making.The majority of studies were descriptive. The few studies that developed dementia specific tools to guideend of life care and outcome measures specific to improve comfort and communication, demonstratedwhat could be achieved, and how much more needs to be done.

Conclusions:Research on end-of-life care for people with dementia has yet to develop interventions thataddress the particular challenges that dying with dementia poses. There is a need for investigation ofinterventions and outcome measures for providing end-of-life care in the settings where the majority ofthis population live and die. Copyright # 2009 John Wiley & Sons, Ltd.

Key words: dementia; end-of-life care; community dwelling older peopleHistory: Received 23 February 2009; Accepted 28 May 2009; Published online 17 August 2009 in Wiley InterScience(www.interscience.wiley.com).DOI: 10.1002/gps.2343

Introduction

There is an increasing policy interest in the needs ofpeople with dementia (Department of Health, 2009)and end-of-life care for older people with long-termconditions (World Health Organisation, 2004;

ight # 2009 John Wiley & Sons, Ltd.

National Council for Palliative Care, 2006; Departmentof Health, 2007). Professional and policy guidance oncare for people with dementia nearing the end of lifeemphasise the importance of advance care planning,co-ordinated working between health and social care,and the adaptation of palliative care frameworks and

Int J Geriatr Psychiatry 2010; 25: 329–337.

330 C. Goodman et al.

tools for people with long term conditions (Ellershawet al., 1997; Alzheimer Europe, 2006, 2008; Depart-ment of Health, 2008).Currently one in 14 people of the UK over the age of

65 has a form of dementia, rising to one in six of thoseover 85. Dementia is one of the main causes ofdisability in later life (World Health Organisation,2003). People diagnosed with dementia do notnecessarily die from dementia but will die with it(Vallelly et al., 2006). The life expectancy for someonediagnosed from onset of symptoms is on average4.5 years but can be as long as 10.7 years, depending onage at the time of diagnosis and the presence ofco-morbidities, (Xie et al., 2008). In the UK, a third ofall people with dementia live in a care home and two-thirds in their own homes (Alzheimer’s Society, 2007).Forty per cent of older people with dementia will die athome or in a care home environment that has neitheron-site nursing nor access to specialist palliative careservices (Kay et al., 2000; McDonald and Cooper,2006). In the USA, over half of people with dementiadie in a nursing home (Mitchell et al., 2005). Reviewsof evidence to date have drawn heavily on evidencefrom settings where there is access to medical andspecialist palliative care services for this population(Coventry et al., 2005; Hughes et al., 2005; Robinsonet al., 2005; Sampson et al., 2005; Zwakhalen et al.,2006; Birch and Draper, 2008). Generalist palliativecare frameworks may increase awareness of the issuesfor people with dementia. However, for those who areliving at home or in care homes, definitions of end-of-life are often imprecise, and it is unclear whethergeneralist palliative care frameworks address the needsof people with dementia (Goodman et al., 2003;Downs et al., 2006; Shipman et al., 2008).This paper reports on an integrated review of

research that synthesised the qualitative and quanti-tative evidence on end-of-life care for communitydwelling older people (including those living in carehomes) with dementia, addressing the question: Whatis the evidence for palliative care interventions forcommunity dwelling older people (including thoseresident in care homes) with dementia?

Methods

Published and unpublished English language studieson palliative care for older people with dementia,produced between 1985 and 2006 were included.Published studies were identified through electronicdata bases of papers in peer reviewed journals: AMED,ASSIA, BNI, CareData, CINAHL, EBMR, EMBASE,

Copyright # 2009 John Wiley & Sons, Ltd.

HMIC, IBSS, Medline, PSychINFO and Social ScienceCitation index. The Cochrane database and olderpeople and dementia specialist libraries, for examplethe Alzheimer’s Society library and Dementia ServicesDevelopment library, were reviewed. Online data basesof unpublished evidence and ‘grey’ evidence (e.g.SIGLE, research registers, conference proceedings)were systematically examined, and hand searchesundertaken of non-indexed journals and frequentlycited journals. The search included the followingterms: palliative care, terminal care, attitude to death,or dying, end-of-life care, comfort care, symptomcontrol, end stage disease, living will, advance directive,palliate$ adj (treatment or care) and subject headingsfor dementia: Alzheimer’s disease, dementia, neuro-degenerative diseases, Parkinson’s disease, aphasia. Keyauthors, individuals and agencies with a remit fordementia care were contacted to identify current workand unpublished reports. Lateral searching ‘techniquesand the related articles’ option on data bases were alsoused, an approach particularly recommended whensearching for studies on complex interventions(Greenhalgh et al., 2004). Studies included were thosethat focused on prognostic indicators for end-of-lifecare, assessment, support/relief, respite and edu-cational interventions for older people with dementiain primary care settings/community dwelling settings(defined as patients’ own home), care homes, (definedas a long term residential facility for older people thatoffers personal care and may or may not have onsite nursing provision) and settings staffed by or withlinks to primary care. Studies were excluded when theywere:

(1) A
synthesis of expert opinion. (2) E mpirical studies that were hospital-based. (3) N ot in the English language. (4) O n people with dementia under 65 years old. (5) E ither end of life studies not specific to dementia or
dementia studies but not at the end of life.

As part of the development of the review method-ology, a user representative group was convened. Itconsisted of eight family carers of people who hadeither recently died from, or were suffering fromsymptoms of advanced dementia, three user represen-tatives from older people and dementia charities, andfive health professionals involved in end-of-life care forpeople with dementia. This was a self-selecting groupthat had responded to an invitation sent out through alocal network of health professionals, academics andmembers of the public interested in older people’sresearch (AgeNeT). The group’s discussions informed


End of life care for community dwelling older people with dementia 331

the researchers’ decisions on the breadth of sources forthe literature. They also identified from their perspect-ive the key research questions and research prioritiesfor people with dementia at the end of life that wereincorporated into the review. For the purposes of thereview interventions were defined as (a) those activitiesthat could influence how end of life was recognised and(b) care provided for people with dementia at the endof life. This included descriptive studies if the focusand findings could be interpreted as having the poten-tial to inform clinical decision making.Electronic search results were downloaded into

bibliographic software screened using the predefinedinclusion criteria and all members of the multi-disciplinary research team (VD, KF, ES, MB, SI, MBi)reviewed potentially relevant citations. These were thenscreened independently by two reviewers (JW, CG,CE). The methodological quality of studies was judgedusing criteria based on those of the CochraneCollaboration and the Cochrane EPOC group (EPOC,2005; Higgins and Green, 2006).

Results

Over 5000 possible research publications were ident-ified. On initial reading of the abstracts 292 appeared tomeet the inclusion criteria and the full publicationswere retrieved. Most of these (223) were excluded bythe reviewers because they either failed to meet theinclusion criteria of empirical research evidence (103)or were empirical studies but did not describe/evaluatean intervention in dementia care at the end of life forolder people in a community setting (120).Sixty seven papers were included in the final review.

Most studies were conducted in North America (61%,n¼ 41). Thirty per cent (n¼ 20) reported on Europeanstudies (including the UK) and the remainder onstudies from Asia and Australia. The majority ofstudies (64%, 43) had been undertaken in a care homesetting. Only 18% (12) exclusively concerned livingand dying with dementia at home, while a further sixstudies included at home care in mixed setting studies(e.g. at home care and hospice care). Six studiesincluded direct evidence from people with dementia(The Anne Mei, 2002; Allen, 2003; Abbey et al., 2004;Shega et al., 2004; Magaziner et al., 2005; Abbey, 2006)as opposed to relying on family carers’ and healthprofessionals’ accounts and/or records of the care.Most studies had purposive or convenience samples.Individual non-experimental studies were the mostfrequent (58%, 39), followed by descriptive studies(37%, 25). The literature contained two Randomised


Controlled Trials (Kovach et al., 2006a, 2006b) andone other experimental study (Abbey et al., 2006). Ofthose studies that included data on people withdementia (n¼ 36), sample sizes ranged from 25 to 9264(median 148); large sample sizes were found in thosestudies that used secondary analysis of large patientmedical record data sets. The papers were furthercategorised by the type of research question theyaddressed. This gave four broad categories concernedwith: the experience of caring for people with dementiawho were dying, how dying in people with dementia isrecognised, research on symptom management, andresearch on decision making about end-of-life care forpeople with dementia. These were summarised as:

� D
ementia care towards the end of life, � P redicting the approach of death for people withdementia,
� P
alliative symptom management for people withdementia,
� D
ecision making at the end of life.
Although inevitably there was some overlap withstudies falling into more than one category the highestproportion of papers (n¼ 28, 41%) focused ondescribing dementia care towards the end of life.Predicting the approach of death for people withdementia (18%, 12) was a particular focus of USstudies influenced by US financial eligibility criteriafor time limited hospice care. Studies addressing prac-titioners’ and family carers’ decision making at theend-of-life, and the use of advanced care directivesaccounted for 25% (17) of papers. Thirteen papers(19%) focused on pain and behavioural symptoms,measurement of discomfort and the effects of with-holding nutrition and hydration. Practitioner edu-cation, design of care settings psycho–social issues orspirituality were addressed within some of the studiesreviewed but not as discrete areas of research (e.g.Albinsson and Strang, 2003; Abbey et al., 2006). Theevidence will now be considered in turn for each of thecategories.

Dementia care towards the end of life

This section considers what is known about howculture and context informs how care is provided andthe overall experience of end-of-life care for olderpeople with dementia and their family carers.The variation between different countries’

approaches to end-of-life care can be attributed tohow end-of-life care is organised (particularly in



nursing homes) and the legal and social understandingof end-of-life decision making, which in turn reflectsboth professional and family values (Helton et al.,2006). A Dutch study of 35 patients concluded thatbecause the clinical course of dementia was considerednormal, artificial administration of fluids and food wasrare (The Anne Mei, 2002). The interpretations of thepatient’s quality of life by their care providerswere often culturally determined and could be moresignificant in shaping care than living wills and policyagreements. Longitudinal studies of antibiotic treat-ment following onset of pneumonia in people withdementia in the USA and the Netherlands, demon-strated a higher mortality from pneumonia for peoplewith dementia in the Netherlands than in the USA(Mehr et al., 2003, Steen et al., 2004). A Spanishprospective study with an unrepresentative sample ofcommunity dwelling people with advanced dementia,found that using artificial nutrition was stronglyassociated with mortality (Varez Fernandez et al.,2005). One US study also found that there were rural–urban differences between residents with severedementia at the end of life with a greater use ofaggressive treatment for urban subjects (Gessert et al.,2001). Studies that compared end-of-life care forpeople with dementia between countries and settingssignify how location and systems of care as well aspatient symptoms and physician responses influencepatient outcomes.Notwithstanding cultural differences, studies from

North America, Europe and Australia indicated thatpeople with dementia are likely to receive a poorerquality of care than those without dementia. There area few studies demonstrating interventions thatimprove this situation. People with dementia livingin nursing homes experience fewer adverse symptomsand improved levels of comfort when there aredementia specific, structured, approaches to providingcare, with specialist support and staff education,(Kovach et al., 1996, 1999; Bekelman et al., 2005).However, when compared with other patient groups,people with dementia receive less pain relief and fewermedical services, and any decisions to forgo hospitaladmission are not made until death is imminent(McCarthy et al., 1997; Burton et al., 2001; McCor-mick et al., 2001; Haydar et al., 2004; Lamberg, et al.,2005; Hirakawa et al., 2006a, 2006b). Barriers to theprovision of quality care for people with dementia atend of life include the lack of any valid measurement ofquality of care and quality of life, and of appropriateinterventions (Blasi et al., 2002). Studies show that,even with the use of clinical assessment tools it isdifficult to recognise when someone with dementia is


dying (Mitchell et al., 2004a, 2004b; Brandt and Ribe,2005) and, also, that staff lack confidence in theassessment and management of care at the end oflife for people with dementia (Moss et al., 2002).For people with dementia living at home or in

settings where family members have ongoing contactand involvement, the role and contribution of carers iscrucial. Studies indicate that family carers of olderpeople with dementia who are approaching the end oflife have different but equivalent needs to carers ofpatients dying from other diseases (Schulz et al., 2003).Rather than the physical aspects of the end stage ofdementia, carers’ experiences and responses are shapedby the dementia-related behaviours and the experienceof prolonged loss, including loss of choice and controlwhen someone moves into a care home or istransferred to hospital (Loos, 1997; McCarthy et al.,1997; Albinssion and Strang, 2003a, 2003b; Bond et al.,2003; Bowes and Wilkinson, 2003; Diwan et al., 2004).Studies highlight the mixed feelings caregivers experi-ence at the death of the person with dementia, theimportance of a ‘goodbye moment’ and the mis-conception that all the grieving has already been doneby the time a person with dementia dies (Almberget al., 2000; Adams, 2004). Although when there hasbeen a protracted period of caring, a study of 217family carers found relief is a significant emotion whenthe person with dementia dies, with only a minority(14%) requiring bereavement related services (Schulzet al., 2003). When the older person with dementia isin a care home, factors that improve carer experienceand satisfaction, particularly around end-of-life caredecision making are: giving structured time tocommunication, addressing issues of resident comfort,avoidance of tube feeding and care in a specialist unit(Engel et al., 2006).

Predicting the approach of death for peoplewith dementia

Recognising when a person stops living with dementiaand starts dying from it, and the prediction of survivaltime, can influence decisions to involve specialistpalliative care services and the release of resources. Itcan also influence decision making about the benefit oftransferring patients to acute services. A failure torecognise that someone is dying can result inpotentially distressing and unnecessary hospital admis-sions (Lamberg et al., 2005). A number of studiesindicate that health professionals are not skilled atrecognising the end stages. A US study of 883 nursinghome residents found that one per cent of people with



dementia were recorded as having a life expectancy ofless than six months, but 71% of them died during thisperiod (Mitchell et al., 2004a). A Korean study (Suhet al., 2004) tested the hypothesis that mortality inpeople with dementia is higher in care homes than inthe community and found no difference in mortalityrate. Predictors of death were age, global deterioration,duration of disease, the presence of hallucinations,wandering and depression. A five year longitudinalstudy of 102 community dwelling people withdementia found dementia associated with excessmortality; major causes of death related to dementiawere cachexia, dehydration and pneumonia (Boersmaet al., 1999). However, two cohort studies indicatedthat the severity of dementia itself, independent of thepresence of co-morbidities, was enough to predict theend of life (Dooneief et al., 1996; Van Dijk et al., 1996).Little consensus was found about the value of

prognostic indicators for people with dementia.Several studies tested and validated scales to predictsurvival. Contextual factors such as the use of tubefeeding and less aggressive care plans (Hanrahan et al.,1999; Lapane et al., 2001) plus the inability of somescoring systems to discriminate between underlyingmorbidities and different disease trajectories, genderdifferences, and disabilities mean that existing toolsand guidelines need further validation and refinement(Gambassi et al., 1999; Mitchell et al., 2004a, 2004b;Magaziner et al., 2005). A small descriptive studyargued that the use of hospice guidelines for peoplewith dementia were useful for identifying survival timeof less than six months (Hanrahan et al., 1999), but astudy that reviewed the notes of 165 people withdementia admitted to a community-based hospicefound that only 64% of people who met criteria forhospice care died within six months of admission. Itconcluded that advanced age, anorexia and level offunction were more useful prognostic indicators thanexisting guidelines (Schonwetter et al., 2003).

Palliative symptom management for peoplewith dementia

This section considers what is known about themanagement of pain and discomfort at the end of life.Compared to those with other conditions patients

with dementia are more likely to experience a variety ofsymptoms including persistent pain, and are morelikely to be untreated, in the last six months of life(McCarthy et al., 1997). More recently, Hirakawa et al.(2006a), in a retrospective survey in Japan, comparedthe last 48 hours of life of people with dementia


(n¼ 98) with patients at home without dementia(n¼ 112) and compared their experience of symptomsand the end-of-life care they received. After controllingfor age and other differences in baseline characteristics,dementia was determined to be a significant indepen-dent predictor of uncontrolled pain.Research on the assessment of pain for people with

end stage dementia is limited and has focused on theability of carers to predict pain (Shega et al., 2004) andthe validity and perceived usefulness of different painassessment tools for end-of-life care (Abbey et al.,2004). Van Lersel et al. (2006) asked 185 care providersto compare two pain assessment tools (Abbey andPAINAD) with 157 older people who could notverbally express their experience of pain. Approxi-mately half of care providers evaluated both scales asbeing good measures of pain and easy to use, andidentified three indicators as the most valuable formeasuring pain: facial expression, vocalisation andbody language.A series of studies developing and testing an

assessment tool for discomfort in dementia (ADD)in people with late stage dementia in nursinghomes, used analgesia and provision of non-pharma-cological comfort intervention as outcome measures(Kovach et al., 1999; Kovach et al., 2001). Overallfindings suggested that use of the tool could improvesymptom recognition and administration of analgesiaalthough its uptake and use by care staff was variable.Later work by the same team (Kovach et al., 2006a,2006b) tested a five step clinical protocol to promotecomfort and reduction of behavioural symptoms ofpsychological distress with 57 nursing home residents.Whilst treatment response to positive assessment waseffective for 86% of participants, 70% of participantsreceived a positive assessment, but no treatment. Non-pharmaceutical interventions were effective in redu-cing discomfort for 62% of participants, and analgesicseffective for 75% of participants The study demon-strated more effective use of analgesia and lessdiscomfort in the intervention group. This work,and that of Abbey et al. (2004), highlighted theimportance of structured ways of working thatcombine educational support for care workers withthe development of interventions that are specific forend-of-life care for people with dementia. Thesestudies were based in nursing homes and relied oneffective cross-disciplinary working.We found no research in these settings that focused

on different ways of using nutrition and fluids as ameans of providing comfort and enhanced quality oflife. Although there is some evidence to suggest thatwithdrawing artificial hydration and nutrition does not



increase discomfort (Chouinard et al., 1998; Pasmanet al., 2004, 2005).

Decision making at the end of life

Advanced care planning represents an opportunity toinvolve people with dementia and their carers indecision making and to achieve care that aims to becentred on the individual’s wishes rather than theassumptions of the service. Gjerdingen et al. (1999)in a survey of 84 older people living at home and intransitional care found that three quarters would notwant aggressive interventions, including tube feeding,if they had dementia. In a cohort study of 78 peoplewith dementia across five US nursing homes, Allen(2003) found that most residents could state a simpletreatment preference (82.4%), but a sizable numberdid not retain capacity to understand treatmentalternatives or appreciate the consequences of theirchoice. The authors concluded that measures ofcognitive ability offered limited information about aresident’s capacity for decision making and recom-mended that interventions to engage residents andfamilies in structured discussions for end-of-lifeplanning were needed.

Carer involvement in advance care planning anddecision making

Little is known about how carers engage withanticipating the end-of-life for people with dementia(Roscoe and Cohen, 1999), although family carers aremore likely than professionals to want interventions tosupport life (Coetzee et al., 2003). A robust qualitativestudy with 28 carers of people with dementiademonstrated the complexity and stages of the decisionmaking process. It concluded that families needassistance to process difficult and painful emotions,to understand the disease trajectory, to appreciate thatsome decisions might impede a natural death and tograsp the available comfort and palliative care options(Forbes et al., 2000). Nevertheless, carers believe thatadvanced directives help (Bekelman et al., 2005). Thepresence of an advance care plan and perceptions of apatient’s quality of life may affect carers’ decisionmaking about interventions to prolong life. However,the review demonstrated how contextual factors suchas level of education, rural or urban settings andnationality all influence individuals’ responses todecision making about place of care and interventionsat the end of life (Caron et al., 2005a, 2005b; Chen


et al., 2006; Gessert et al., 2006). Very few studies haveengaged with how carers interact with professionals inthe decision-making process, nor have they describedwhat is required for effective communication (Caronet al., 2005b) even though it is clear that howphysicians resolve and negotiate patient and familypreferences regarding care appears to directly influencepatient outcomes (Helton et al., 2006). In the absenceof agreed guidelines, and advance care plans, decisionmaking for people with dementia at the end of life isshaped by differences in religious beliefs, professionaltraining, understanding of the disease, what is meantby palliative care, perspectives of other patients, cultureand beliefs (Luchins and Hanrahan, 1993; Cavalieriet al., 2002; Hinkka et al., 2002; The Anne Mei, 2002;Lacey, 2005; Haydar et al., 2004; Rurup et al., 2006).Despite discussion and exploration of the feasibility ofintroducing advance care planning into long term carefor people with dementia (Volicer et al., 2002), wefound no studies that evaluated the impact of advancedcare directives on the overall approach to end-of-lifecare and its related outcomes of place of death,treatments received and carer involvement in andsatisfaction with the home or care home environment.Studies on professionals’ decision making for people

with dementia at the end of life similarly highlight amix of views and approaches. One review, of 929deaths over a year in a nursing home, found thatdecisions by attending Dutch physicians to foregoartificial administration of feeding and fluids weremore likely for residents with perceived poor quality oflife and where palliation was the aim of treatment.Relatives and competent residents were involved in thedecision to forego treatment, but not relatives ofresidents lacking capacity (Onwuteaka-Philipsen et al.,2001). One study, also from the Netherlands, reviewedwith physicians the notes of 135 people in nursinghomes who died from pneumonia after antibiotics hadbeen withheld, and found that the intention to hastendeath was evident in 53% of the cases, and that theaction would hasten death was considered in 41% (Vander Steen et al., 2005). It is significant that the two studieson professional decision making we found were bothfrom the Netherlands where medical staff are on hand.We found no studies that considered how familyphysicians, community nurses and care home staffbecome involved in decision making for this population.

Discussion

The majority of older people with dementia spend thelast months and years of their life at home or in a care


Key Points

� The majority of older people with dementia liveand die at home or in a care home.

� Policy guidance and end-of-life initiatives, thoughlaudable, have outstripped the available evidenceon end-of-life care for people with dementia andtheir carers that live at home and in care homes.

� Without a better understanding of the inter-actions between patient symptoms, caregiverfactors, cultural and ethnic differences, anddifferent types of collaborative working, it islikely that research in this area will continue to beatheoretical and insensitive to context.


home. A preoccupation with decision making and careprovision in the last days of life, has meant that littleresearch has focused on the detail of the experiences ofpatients with dementia and their carers’ leading up tothe last days of life, or considered what supports andinhibits the provision of end-of-life care at home or insettings that have intermittent access to specialistpalliative care support.Without a better understandingof the interactions between patient symptoms,caregiver factors, cultural and ethnic differences, anddifferent types of collaborative working, it is likely thatresearch in this area will continue to be atheoreticaland insensitive to context.The majority of studies were not experimental in

design but descriptive, so could only begin to addressaspects of care that should be stopped and deficits inexisting approaches to care. Downs et al. (2006) havenoted how end-of-life care for people with dementiahas yet to develop interventions that address theparticular challenges that dying with dementia poses.The few studies that did develop dementia specifictools to guide end-of-life care and outcome measuresspecific to improve comfort and communicationdemonstrated both what could be achieved and howmuch more needs to be done. That none of this workwas undertaken in patients’ homes or involved familyphysicians and community nursing staff is significantand of concern.There were limitations to the review. The absence of

a shared understanding of how end of life is recognised,or at what point end of life is defined for people withdementia, means that research that focused onimproving symptom assessment for people withadvanced dementia, on needs assessment in carehomes, and on communication and the involvement ofpeople with dementia in decision making were notincluded in the review (Fossey et al., 2006; Hancocket al., 2006; Zwakhalen et al., 2006). Data extractionceased in 2006, however a rapid review of research andreviews published up till 2008 (Birch and Draper, 2008;Di Giulio et al., 2008; Lorenz and Lynn, 2008) indicatethat the research focus and methods and findingsdiscussed in this paper have not dramatically changed,and that there are still very few intervention studiesthat include people with dementia who are living athome or in a care home.This review complements the work of others that

have demonstrated how fragmented and descriptiveresearch on end-of-life care for people with dementia isregardless of setting, and the absence of work that isdementia specific (Hughes et al., 2007). What thisreview starkly illustrates however, is the lack ofinterventions and outcome measures for providing


end-of-life care in the settings where the majority ofthis population live and die.

Conflict of interest

None declared.

ACKNOWLEDGEMENT

This work was funded by North Central LondonResearch Network.

References

Abbey J, Piller N, De BA, et al. 2004. The Abbey pain scale: a 1-minutenumerical indicator for people with end-stage dementia. Int J Palliat Nurs10(1): 6–13.

Abbey J, Douglas C, Edwards H, Courtney M, Parker D, Yates P. 2006.Develop, Trial and Evaluate aModel of Multidisciplinary Palliative Care forResidents with End-Stage Dementia, Princes Charles Hospital Foundation:Brisbane, Queensland.

Adams KB, Sanders S. 2004. Alzheimer’s caregiver differences in experienceof loss, grief reactions and depressive symptoms across stage of disease: amixed-method analysis. Dementia 3(2): 195–210.

Allen RS. 2003. Advance care planning in nursing homes: correlates ofcapacity and possession of advance directives. Gerontologist 43(3): 309–317.

Albinsson L, Strang P. 2003a. Existential concerns of families of late stagedementia patients: questions of freedom, choice, isolation, death andmeaning. J Palliat Med 6(2): 225–234.

Albinsson L, Strang P. 2003b. Differences in supporting families of demen-tia patients and cancer patients: a palliative perspective. Palliat Med17(4): 359–367.

Almberg BE, Grafstorm M, Winbald B. 2000. Caregivers of relatives withdementia: experiences encompasing social support and bereavement.Aging Ment Health 4(1): 82–89.

Alzheimer Europe. 2006. The Use of Advance Directives by People withDementia, Alzheimer Europe: Luxembourg.

Alzheimer Europe. 2008. Position and Recommendations on End-of-LifeCare, Alzheimer Europe: Luxembourg.

Alzheimer’s Society. 2007. Dementia UK: The Full Report. Alzheimer’sSociety: London.

Bekelman DB, Black BS, Shore AD, Kasper JD, Rabins PV. 2005. Hospicecare in a cohort of elders with dementia and mild cognitive impairment.J Pain Symptom Manag 30(3): 208–214.



Birch D, Draper J. 2008. A critical literature review exploring the challengesof delivering effective palliative care to older people with dementia. J ClinNurs 17(9): 1144–1163.

Blasi ZV, Hurley AC, Volicer L. 2002. End-of-life care in dementia: a reviewof problems, prospects and solutions in practice. J Am Med Dir Assoc 3:57–65.

Boersma F, van den Brink W, Deeg DJH, Eefsting JA, van Tilburg W. 1999.Survival in a population-based cohort of dementia patients: predictorsand causes of mortality. Int J Geriat Psychiatry 14: 748–753.

Burton LC, German PS, Gruber-Baldini AL, et al. 2001. Medical care fornursing home residents: differences by dementia status. JAGS 49: 142–147.

Bond JM, Micheal SC, Davies S. 2003. The quality of life of spouse dementiacaregivers: changes associated with yielding to formal care and widow-hood. Soc Sci Med 57: 2385–2395.

Bowes A, Wilkinson H. 2003. We didn’t know it would get that bad: SouthAsian experiences of dementia and the service response. Health Soc CareCommunity 11(5): 387–396.

Brandt HE, Ribe MW. 2005. The last days of life of nursing home patientswith and without dementia assessed with the Palliative Care OutcomeScale. Palliat Med 19: 334–342.

Caron CD, Griffith J, Arcand M. 2005a. End-of-life decisions making indementia. Dementia 4(1): 113–136.

Caron CD, Griffith J, ArcandM. 2005b. Decisionmaking at the end of life indementia: how family caregivers perceive their interactions with healthcare providers in LTC settings. J Appl Gerontol 24(3): 231–247.

Cavalieri TA, Latif W, Ciesielski J, Forman LJ. 2002. How physiciansapproach advance care planning in patients with mild to moderatedementia. JAOA 102(10): 541–544.

Chen J-H, Lamberg JL, Chen Y-C, et al. 2006. Occurrence and treatment ofsuspected pneumonia in long-term-care residents dying with advanceddementia. JAGS 54: 290–295.

Chouinard J, Lavigne E, Villenueuve C. 1998. Weight loss, dysphagia andoutcome in advanced dementia. Dysphagia 13: 151–155.

Coetzee RH, Leask SJ, Jones RG. 2003. The attitudes of carers and old agepsychiatrists towards the treatment of potentially fatal events in end-stagedementia. Int J Geriatr Psychiatr 18: 169–173.

Coventry PA, Grande GE, Richards DA, Todd CJ. 2005. Prediction ofappropriate timing of palliative care for older adults with non-malignantlife-threatening disease: a systematic review. Age Ageing 34: 218–227.

Department of Health. 2007. Building on Firm Foundations, Improving Careat the End of Life in Care Homes. Department of Health: London.

Department of Health. 2008. End of Life Care Strategy—Promoting HighQuality Care for All Adults at the End of Life. Department of Health:London.

Department of Health. 2009. Living Well with Dementia: A NationalDementia Strategy. Department of Health: London.

Di Giulio P, Toscani F, Villani D, et al. 2008. Dying with advanced dementiain long-term care geriatric institutions: a retrospective study. J PalliatMed 11(7): 1023–1028.

Diwan S, Hougham GW, Sachs GA. 2004. Strain experienced by caregiversof dementia patients receiving palliative care: findings from the Palliativeexcellence in Alzheimer Care Efforts (PEACE) Program. J Palliat Med7(6): 797–807.

Dooneief G, Marder K, Tang M-X, Stern Y. 1996. The Clinical DementiaRating scale: Community-based validation of ’profound’ and ’terminal’stages. Neurology 46: 1746–1749.

Downs M, Small N, Froggatt N. 2006. Explanatory models of dementia:links to end-of-life care. Int J Palliat Nurs 12(5): 209–213.

Engel SE, Kiely DK, Mitchell SL. 2006. Satisfaction with end-of-life care fornursing home residents with advanced dementia. Am Geriatr Soc 54:1567–1572.

EPOC: Cochrane Collaboration on Effective Professional Practice. 2005.The cochrane effective practice and organisation of care review group.Data collection checklist. In The Cochrane Library, Issue 2, John Wiley &Sons, Ltd: Chichester, UK.

Ellershaw J, Foster A, Murphy D, Shea T, Overill S. 1997. Developing anintegrated care pathway for the dying patient. Eur J Palliat Care 4: 203–207.

Forbes S, Bern-Klug M, Gessert C. 2000. End-of-life decision-making fornursing home residents with dementia. J Nurs Scholarsh 32(3): 251–258.


Fossey J, Ballard C, Juszczak E, et al. 2006. Effect of enhanced psychosocialcare on antipsychotic use in nursing home residents with severe demen-tia: cluster randomised trial. Br Med J 332(7544): 756–761.

Gambassi G, Landi F, Lapane KL, Sgadari, Mor V, Bernabei R. 1999.Predictors of mortality in patients with Alzheimer’s disease living innursing homes. J Neurol Neurosurg Psychiatr 67: 59–65.

Gessert CE, Haller IV, Kane RL, Degenholtz H. 2006. Rural-urban differ-ences inMedicaid Care for Nursing Home residents with severe dementiaat the end of life. JAGS 54: 1199–1205.

Gjerdingen DK, Neff JA, Wang M, Chaloner K. 1999. Older person’sopinions about life sustaining procedures in the face of dementia. ArchFam Med 8: 421–425.

Goodman C, Woolley R, Knight D. 2003. District nurses’ experiences ofproviding care in residential homes: issues of context and demand. J ClinNurs 12(1): 67–76.

Greenhalgh T, Robert G, MacFarlane F, Bate P, Kyriakidou O. 2004.Diffusion of innovations in service organizations: systematic reviewand recommendations. The Milbank Quarterly 82(4): 581.

Hancock GA, Bob Woods B, Challis D, Orrell M. 2006. The needs of olderpeoplewithdementia in residential care. Int J Geriatr Psychiatr21: 143–149.

Hanrahan P, Raymond M, McGowan E, Luchins DJ. 1999. Criteria forenrolling dementia patients in hospice: a replication. Am J Hospice PalliatCare January/February 16(1): 395–400.

Haydar ZR, Lowe AJ, Kahveci KL, Weatherford W, Finucane T. 2004.Differences in end-of-life preferences between congestive heart failureand dementia in a medical house calls programme. JAGS 52: 736–740.

Helton MR, van der Steen, Daaleman TP, Gamble GR, Ribbe MW. 2006.A cross-cultural study of physician treatment decisions for dementednursing home patients who develop pneumonia. Ann Fam Med 4(3):221–227.

Higgins JPT, Green S (eds). 2008. Cochrane Handbook for SystematicReviews of Interventions Version 5.0.1 The Cochrane Collaboration.Available at: www.cochrane-handbook.org

Hinkka H, Kosunen E, Lammi EK, Metsanoja R, Puustelli A, Kellokumpu-Lehtinen P. 2002. Decision making in terminal care: a survey of Finnishdoctors’ treatment decisions in end-of-life scenarios involving a terminalcancer and a terminal de.

Hirakawa Y, Masuda Y, Kuzuya M, et al. 2006a. End-of-life experience ofdemented elderly patients at home: findings from DEATH project.Psychogeriatrics 6(2): 60–67.

Hirakawa Y, Masuda Y, Uemura K, et al. 2006. End of life care at grouphomes for patients with dementia in Japan. Findings from an analysis ofpolicy related differences. Archives of Gerontol Geritatr 42: 233–245.

Hughes JC, Robinson L, Volicer L. 2005. (editorial) Specialist palliative carein dementia. Br Med J 330: 57–58.

Hughes JC, Jolley D, Jordan A, Sampson EL. 2007. Palliative care indementia: issues and evidence. Adv Psychiatr Treat 13: 251–260.

Kay DWK, Forster DP, Newens AJ. 2000. Long-term survival, place of death,and death certification in clinically diagnosed pre-senile dementia innorthern England: Follow-up after 8–12 years. Br J Psychiatr 177: 156–162.

Kovach CR, Logan BR, Noonan PE, et al. 2006a. Effects of the serial trialintervention on discomfort and behaviour of nursing home residentswith dementia. Am J Alzheimer’s Disease Other Dementia’s 21(3): 147–155.

Kovach CR, Cashin JR, Sauer L. 2006b. Deconstruction of a complextailored intervention to assess and treat discomfort of people withadvanced dementia. J Adv Nurs 55(6): 678–688.

Kovach CR, Noonan PE, Griffie J, Muchka S, Weissman DE. 2001. Use ofthe assessment of discomfort in dementia protocol. Appl Nurs Res 14(4):193–200.

Kovach CR,Weissman DE, Griffie J, Matson S, Muchka S. 1999. Assessmentand treatment of discomfort for people with late-stage dementia. J PainSymptom Manage 18(6): 412–419.

Kovach C, Wilson SA, Noonan E. 1996. The effects of hospice interventionson behaviours, discomforts, and physical complications of end stagedementia nursing home residents. Am J Alzheimer’s Disease OtherDementias 11(7): 7–15.

Lacey D. 2005. Tube feeding, antibiotics, and hospitalization of nursinghome residents with end-stage dementia: perceptions of key medical



decision-makers. Am J Alzheimer’s Disease(R) Other Dementias 20(4):211–219.

Lamberg JL, Person CJ, Kiely DK,Mitchell SL. 2005. Decisions to hospitalizenursing home residents dying with advanced dementia. JAGS 53: 1396–1401.

Lapane KL, Gambassi G, Landi F, et al. 2001. Gender differences inpredictors of mortality in nursing home residents with Alzheimer’sDisease. Neurology 56: 650–654.

Loos CA. 1997. Caregivers of persons with Alzheimer’s disease: someneglected implications of the experience of personal loss and grief. DeathStud 21(5): 501–514.

Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA,Morton SC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C,Sun VC, Shekelle PG. 2008. Evidence for Improving Palliative Care at theEnd of Life: A Systematic Review. Ann Int Med 148(2): 147–159.

Luchins DJ, Hanrahan P. 1993. What is appropriate health care for end-stage dementia? J Am Geriatr Soc 41(11): 25–30.

McCarthy M, Addington-Hall J, Altmann D. 1997. The experience of dyingwith dementia: a retrospective study. Int J Geriatr Psychiatr 12(3): 404–409.

McCormick WC, Hardy J, Kukull WA, et al. 2001. Healthcare utilizationand costs in managed care patients with Alzheimer’s disease during thelast few years of life. JAGS 49: 1156–1160.

McDonald A, Cooper B. 2006. Long-term care and dementia services: animpending crisis. Age and Ageing 36(1): 16–22.

Magaziner J, Zimmerman S, Gruber-Baldini AL, et al. 2005. Mortality andadverse health events in newly admitted nursing home residents with andwithout dementia. JAGS 53: 1858–1866.

Mehr DR, van der Steen JT, Kruse RL, et al. 2003. Lower respiratoryinfections in nursing home residents with dementia: a tale of twocountries. Gerontologist 43: Spec No 2, 85–93.

Mitchell SL, Kiely DK, Hamel MB, et al. 2004a. Estimating prognosis fornursing home residents with advanced dementia. J Am Med Assoc291(22): 2734–2740.

Mitchell SL, Kiely DK, HamelMB. 2004b. Dying with advanced dementia inthe nursing home. Arch Intern Med 164: 321–326.

Mitchell SL, Teno JM, Miller SC, Mor V. 2005. A national study of thelocation of death for older persons with dementia. J Am Geriatr Soc53(2): 299–305.

Moss SM, Braunschweig H, Rubenstein RL. 2002. Terminal care for nursinghome residents with dementia. Alzheimer’s Care Quarterly 3(3): 233–246.

National Council for Palliative Care. 2006. Exploring Palliative Care forPeople with Dementia NCPC London.

Onwuteaka-Philipsen BE, Apsman RW, Kruit A, et al. 2001. Witholding orwithdrawing artificial administration of foods and fluids in nursing-home patients. Age and Ageing 30: 459–465.

Pasman HR, Mei The BA, Onwuteaka-Philipsen BD, Ribbe MW, van derWal G. 2004. Participants in the decision-making on artificial nutritionand hydration to demented nursing home patients: a qualitative study.J Aging Stud 18: 321–335.

Pasman HR, Onwuteaka-Philipsen DMW, Ooms ME, Ribbe MW, van derWal G. 2005. Discomfort in nursing home patients with severe dementiain whom artificial nutrition and hydration is forgone. Arch Intern Med165: 1729–1735.

Robinson L, Hughes J, Daley S, et al. 2005. End-of-life care and dementia.Rev Clin Gerontol 15: 135–148.

Roscoe LA, Cohen D. 1999. Cognitive attributions, depressive symptomsand hopelessness as predictors of perceived desirability of physician-assisted suicide in Alzheimer’s caregivers. Am J Alzheimer’s Disease 14(3):165–171.

RurupML, Onwuteaka-Philipsen BD, Pasman RH, RibbeMW, van derWalG. 2006. Attitudes of physicians, nurses and relatives towards end-of-life


decisions concerning nursing home patients with dementia. Patient EducCounsel 61(3): 372.

Sampson EL, et al. 2005. A systematic review of the scientific evidence forthe efficacy of a palliative care approach in advanced dementia. IntPsychogeriatr 17(1): 31–340.

Schonwetter RS, Han B, Small BJ, et al. 2003. Predictors of six-monthsurvival among patients with dementia: an evaluation of hospice Med-icare guidelines. Am J Hospice Palliat Care 20(2): 105–113.

Schulz R, Mendelsohn AB, Haley WE, et al. 2003. for the Resourcesfor Enhancing Alzheimer’s care giver health (REACH) investigators(2003). End-of-life care and the effectos of bereavement on family caregivers of persons with dementia. New Engl J Med 349(20): 1936–1942.

Shega JW,HoughamGw, Stocking CB, Cox-Hayley D, Sachs GA. 2004. Painin community-dwelling persons with dementia: frequency, intensity andcongruence between patient and caregiver report. J Pain SymptomManag28(6): 58559.

Shipman C, Gysels M, White P, et al. 2008. Improving generalist end-of-lifecare: national consultation with practitioners, commissioners, academics,and service user groups. Br Med J 337: 2290.

Steen JT, Kruse RL, OoomsME, RibbMW, van derWal G, Heintz LL, MehrDR. 2004. Treatment of nursing home residents with dementia and lowerrespiratory tract infection in the United States and the Netherlands: anocean apart. J Am Geriatr Soc 52: 691–699.

Suh GH, Yeon BK, Lee JY. 2004. Mortality in Alzheimer’s disease: acomparative prospective Korean study in the community and nursinghomes. Int J Geriatr Psychiatr 20: 26–34.

The AM, Pasman R, Onwuteaka-Philipsen B, Ribbe M, Van der Wal G. 2002.Withholding the artificial administration of fluids and food from elderlypatients with dementia: ethnographic study. Br Med J 325(7376): 1326.

Vallelly S, Evans S, Fear T, Means R. 2006. Opening doors to independence:a longitudinal study exploring the contribution of extra care housing tothe care and support of older people with dementia Housing 21 London.

Van Dijk PTM, Dippel DWJ, Meulen JHP, Habbema DF. 1996. Comor-bidity and its effects on mortality in nursing home patients withdementia. J Nerv Ment Dis 184: 180–187.

Van Lersel T, Timmerman D, Mullie A. 2006. Introduction of a pain scalefor palliative care patients with cognitive impairment. Int J Palliat Nurs12(2): 54–59.

Van der Steen JT, van der Wal G, Mehr DR, Ooms ME, Ribbe MW. 2005.End-of-life decision-making in nursing home residents with dementiaand pneumonia: Dutch physicians’ intentions regarding hastening death.Alzheimer Dis Assoc Disord 19(3): 148–155.

Varez Fernandez, B, Garcia Ordonez MA, Martinez Manzanares C, GomezHuelgas R., 2005. Survival of a cohort of elderly patients with advanceddementia: Nasogastric tube feeding as a risk factor for mortality. Int JGeriatr 20(4): 363–370.

Volicer L, Cantor MD, Derse AR, et al. 2002. Advance care planning byproxy for residents of long-term care facilities who lack decision-makingcapacity. JAGS 50: 761–767.

World Health Organisation. 2003. Global burden of dementia in theyear 2000 summary of methods and data sources. Colin Mathers, MatildeLeonardi www.who.int/entity/healthinfo/statistics/bod_dementia.pdfAccessed 01/05/09.

World Health Organisation. 2004. Palliative Care for Older People, Davies E,Higginson IJ (eds). WHO Regional Office for Europe: Denmark.

Xie J, Brayne C, Matthews FE, the Medical Research Council CognitiveFunction and Ageing Study collaborators. 2008. Survival times in peoplewith dementia: analysis from population based cohort study with 14 yearfollow-up. Br Med J 336(7638): 258–262.

Zwakhalen Sandra, Jan MG, Hamers, Martijn PH, Berger PF. 2006. Thepsychometric quality and clinical usefulness of three pain assessmenttools for elderly people with dementia. Pain 126(1–3): 210–220.


Documents

End of life care for community dwelling older people with dementia: an integrated review