International Psychogeriatrics (2012), 24:6, 856–870 C© International Psychogeriatric Association 2012doi:10.1017/S1041610211002614

R E V I E W

Systematic review of the effectiveness of non-pharmacologicalinterventions to improve quality of life of people withdementia

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Claudia Cooper,1 Naaheed Mukadam,1 Cornelius Katona,1 Constantine G. Lyketsos,2

David Ames,3,4 Peter Rabins,2 Knut Engedal,5 Carlos de Mendonca Lima,6

Dan Blazer,7 Linda Teri,8 Henry Brodaty3,4 and Gill Livingston,1 on behalfof the World Federation of Biological Psychiatry – Old Age Taskforce1University College London, London, UK2Department of Psychiatry, Johns Hopkins Medicine, The Johns Hopkins Bayview Medical Center, Baltimore, MD, USA3National Ageing Research Institute, Parkville, Victoria, Australia4University of Melbourne, Victoria, Australia5Oslo University Hospital, Nydalen, Oslo, Norway6Centro Hospitalar do Alto Ave, Rua dos Cutileiros, GUIMARAES, Portugal7Duke University Medical Center, Durham, NC, USA8University of Washington, Seattle, WA, USA

ABSTRACT

Background: People with dementia report lower quality of life, but we know little about what interventionsmight improve it.

Methods: We systematically reviewed 20 randomized controlled trials reporting the effectiveness of non-pharmacological interventions in improving quality of life or well-being of people with dementia meetingpredetermined criteria. We rated study validity with a checklist. We contacted authors for additional data.We calculated standardized mean differences (SMD) and, for studies reporting similar interventions, pooledstandardized effect sizes (SES).

Results: Pooled analyses found that family carer coping strategy-based interventions (four studies, which didnot individually achieve significance; n = 420; SES 0.24 (range 0.03–0.45)) and combined patient activity andfamily carer coping interventions (two studies, not individually significant; n = 191; SES 0.84 (range 0.54–1.14)) might improve quality of life. In one high-quality study, a care management system improved quality oflife of people with dementia living at home. Group Cognitive Stimulation Therapy (GCST) improved qualityof life of people with dementia in care homes.

Conclusion: Preliminary evidence indicated that coping strategy-based family carer therapy with or without apatient activity intervention improved quality of life of people with dementia living at home. GCST was theonly effective intervention in a higher quality trial for those in care homes, but we did not find such evidencein the community. Few studies explored whether effects continued after the intervention stopped. Futureresearch should explore the longer-term impact of interventions on, and devise strategies to increase, lifequality of people with dementia living in care homes or at home without a family carer.

Key words: well-being, systematic review, meta-analysis, controlled trial

Introduction

The global prevalence of dementia will risedramatically over the next 20 years due to increased

Correspondence should be addressed to: Dr. Claudia Cooper, Department ofMental Health Sciences, University College London, Holborn Union Building,Archway Campus, Highgate Hill, London, N19 5LW, UK. Phone: +0207 2885931; Fax: +0207 288 3411. Email: c.cooper@ucl.ac.uk. Received 13 Sep2011; revision requested 31 Oct 2011; revised version received 15 Nov 2011;accepted 15 Nov 2011. First published online 16 January 2012.

longevity and falling birth rates in many countries(Ferri et al., 2005; Christensen et al., 2009). TheWorld Health Organization (1995) defines qualityof life as “an individual’s perception of their positionin life in the context of the culture and value systemsin which they live and in relation to their goals,standards and concerns.” Because quality of lifeis multifactorial, its measurement is challenging.Judgments and perceptions about the quality of a

Quality of life of people with dementia 857

range of aspects of life will contribute to evaluations,and the importance attached to these will varyamong individuals.

A further difficulty is the lack of consensus abouthow to define quality of life in dementia. Narrowerdefinitions focusing on affect and participatingin and enjoying activities (Albert et al., 1996)inform some quality of life measures, for exampleDementia Care Mapping (DCM), an observer-rated instrument measuring activity, engagementwith the environment, and affect. Rabins et al.(1999) noted that social functioning and perceivedemotional well-being or distress were the twodomains consistently included in health-relatedquality of life instruments. Most dementia-specificquality of life instruments exclude cognitive andphysical functioning (Rabins et al., 1999), althoughthe DEMQOL measures cognitive functioning, aswell as daily activities and looking after yourself,health and well-being, social relationships, and self-concept (Banerjee et al., 2004). The Alzheimer’sDisease Quality-Related Life Scale (ADQRL)includes awareness of a person’s own identity andclose relationships and response to surroundings,items that are related to cognitive functioning(Rabins et al., 1999). It also measures socialinteraction, feelings, and mood. The Quality of Life– Alzheimer’s Disease (QOL-AD) scale has perhapsthe broadest definition, which encompasses physicalhealth, relationships, and financial status (Logsdonet al., 1996). Nonetheless, as quality of life isconsistently cited by older adults as more importantthan disease-specific outcomes, many dementiatrials are now including it as an outcome. Clearlythe definition of quality of life employed in studiesmust be considered carefully when interpreting howinterventions affect it.

The nature of dementia brings into questionthe validity of ratings particularly by those withmoderate and severe illness; but the concept ofquality of life as an individual’s own perceptionsuggests that the rater should be the person withthe illness where possible. Quality of life measureshave therefore been developed to be rated by theperson with dementia, by the carer (ADQRL), byboth or either (QOL-AD; DEMQOL), or by directobservation (DCM). The QOL-AD was developedby asking patients, family, and professional carersabout what is important in quality of life; theADQRL by asking panels of professional and familycarers; and the DEMQOL by interviewing patientsand family carers. The DCM was developed from atheoretical person centered model.

Hoe and colleagues demonstrated that the QOL-AD is valid and reliable when completed by peoplewith dementia, except those with the most pro-found dementia (Mini-Mental State Examination

(MMSE) score <3; Hoe et al., 2005; 2007). Carerproxy reports and self-reports of quality of life arehighly correlated, although people with dementiarate their own quality of life more highly than carersrate it by proxy (Hoe et al., 2006). As there is astrong subjective element to quality of life, it isunsurprising that there is variation in how it is ratedby the people with dementia themselves, family, andprofessional carers and independent observers.

People with dementia reported lower qualityof life than people without dementia in a recentnational English survey, and this was explained bytheir higher levels of physical and mental healthproblems (Cooper et al., 2009). We know little –according to a recent review “almost nothing” –about what interventions promote or inhibit theirquality of life (Cooper et al., 2009). Poorer qualityof life has been associated with depression andless satisfactory relationships but not with greateractivity limitation in dementia (Livingston et al.,2008). Some studies have reported a relationshipwith worse cognition (Cordner et al., 2010), whileothers have not (Livingston et al., 2008). Thesedifferences may be due to varying dementia severityof populations studied or to methodology, with staffratings more likely than patients’ own ratings tocorrelate with higher cognition (Hoe et al., 2006;Black and Rabins, 2010).

This is, to our knowledge, the first systematicreview of the effectiveness of non-pharmacologicalinterventions to focus on quality of life or well-being of people with dementia. Quality of life wasincluded as an outcome in one previous systematicreview of non-pharmacological interventions forpeople with Alzheimer’s disease or mixed dementia(Olazaran et al., 2010), although only two studiesmeasuring quality of life were included (Graff et al.,2007; Gitlin et al., 2008). We considered whetherinterventions were effective immediately and if thiseffect was sustained, and divided interventions intothose for people with dementia living at home andthose in full-time care. This is part of a seriesof systematic reviews by the Old Age Task Forceof the World Federation of Biological Psychiatry(Livingston et al., 2005; Selwood et al., 2007;Cooper et al., 2011).

Methods

Search strategyWe searched PubMed, Web of Science, andCochrane systematic reviews databases throughJanuary 2011 using the keywords “Dementia”or “Alzheimer;” “Quality of life” or “well-being;” and “treatment” or “intervention.” Wesearched references of included papers and relevant

858 C. Cooper et al.

-1.1 -0.6 -0.1 0.4 0.9 1.40.6

0.4

0.2

0.0

* difference

Standard error

Figure 1. Funnel plot demonstrating symmetrical plot indicating low risk of publication bias.

systematic reviews. We asked experts in the field ifthey knew of other papers meeting inclusion criteria.

Inclusion and exclusion criteriaWe included primary research in people withdementia evaluating non-pharmacological inter-ventions in randomized controlled trials (RCTs),which included quality of life or well-being as aquantitative outcome. We restricted our search tostudies published in English and excluded singlecase reports, dissertations, meeting abstracts, andstudies that only used quality of life measuresubscales, if we judged that these did not measureoverall quality of life.

Data extractionTwo authors independently evaluated studyvalidity using a checklist for appraisingRCTs adapted from the Critical AppraisalSkills Programme (http://www.sph.nhs.uk/sph-files/rct%20appraisal%20tool.pdf). They resolveddifferences in discussion with a third author. Weallocated a point for each positive response to thequestions:

1. Were participants appropriately randomized by anindependent person?

2. Were participants, staff, and study personnel as faras possible “blind” to study group?

3. Were all those who entered the trial accounted for atits conclusion, and was an intention to treat analysisused?

4. Was the measure of quality of life valid and reliable?5. Were the participants in all groups followed up and

data collected in the same way?6. Was sufficient power (>80%) to detect a significant

difference in our outcome of interest demonstrated?

We judged papers where the answers to questions2 and 4 above were yes to be of higher quality.

AnalysisWe reported the unadjusted standardized mean dif-ferences (SMD) between control and interventiongroups at follow-up for the quality of life outcome,and their 95% confidence intervals (CI). Wherethe unadjusted SMD was not reported, we usedStatsDirect software, version 2.6.6 (StatsDirect,2008) to calculate it from the means, standarddeviations (SD), and sample sizes (n) of the studygroups. We contacted the authors to request thisinformation if it was not available in the paper. Wecombined study findings where appropriate, andreported pooled standardized effect sizes (SES).These were calculated using direct weights definedas the inverse of the variance of the mean for eachstudy. We performed a funnel plot (Figure 1) toexamine publication bias and reported the Eggerstatistic. This tests for asymmetry of the plot, with

Quality of life of people with dementia 859

1069 papers identified from electronic search (removing duplicates) + 6 from references of relevant systematic reviews)

20 papers included

-

1055 excluded: 761 not a primary research intervention study 118 as not all participants had dementia; 96 did not include a relevant outcome measure; 28 were not an RCT; 24 were protocols only or single case studies; 5 were not in English; 4 did not include a quantitative outcome measure 19 were pharmacological interventions without a psychosocial component

Figure 2. Flow diagram of search results.

a significant result indicating significant asymmetryand therefore bias (Egger et al., 1997).

Results

We included 20 studies. Figure 2 describes thesearch strategy and results, and the reasons forexcluding studies. We did not find evidence ofsignificant publication bias (Egger statistic = 0.41,p = 0.74; Figure 1).

Study validityWe scored 16/20 studies that used a valid andreliable measure of quality of life or well-being andin which raters were blind to group allocation. Wedefined these as higher quality studies, and gavethese priority when interpreting results.

Measures usedAll but one study (Davis et al., 2001) used a measureknown to be valid and reliable in this population.All the studies measured quality of life. Most used aself-report measure, completed by the person withdementia, a carer on their behalf, or both. Themeasures used were: the QOL-AD (Spector et al.,2003; Chapman et al., 2004; Teri et al., 2005; Orrellet al., 2007; Gitlin et al., 2008; Meguro et al., 2008;Clare et al., 2010; Gitlin et al., 2010; Logsdon et al.,

2010), the ADQRL (Politis et al., 2004; Visser et al.,2008; Steinberg et al., 2009), the Dementia Qualityof Life Instrument (Graff et al., 2007), the Qualityof Life assessment (Davis et al., 2001), DEMQOL(Gavrilova et al., 2009; Guerra et al., 2010), andthe Health Utilities Index Mark 3 (HUI-3; Vickreyet al., 2006). Three studies used observer-ratedmeasures: Ballard et al. (2002) and Lai et al. (2004)used DCM while Chenoweth et al. (2009) usedthe Quality of Life in Late-Stage Dementia Scale(QUALID).

Primary outcomesThirteen studies identified one or more primaryoutcome. In three of these, quality of life waseither the sole primary outcome (Logsdon et al.,2010) or one of more than four primary outcomes(Chapman et al., 2004; Gitlin et al., 2010). Noneof the included studies was specifically designed todetect a significant difference in the quality of lifeoutcome. Eight studies reported significant effectson other primary outcomes, which were: patientagitation (Ballard et al., 2002; Chenoweth et al.,2009), goal satisfaction and performance (Clareet al., 2010), patient daily functioning and caregiversense of competence (Graff et al., 2007), patientchallenging behaviors (Gitlin et al., 2008), cognition(Spector et al., 2003), functional performance(Steinberg et al., 2009), and clinician adherence to

860 C. Cooper et al.

guideline recommendations (Vickrey et al., 2006).Two studies did not report a significant effect ontheir primary outcomes of patient needs (Orrellet al., 2007) and apathy (Politis et al., 2004).

FindingsTable 1 describes the studies, including validityratings. The SMD between control and follow-up groups was reported by two studies (Gavrilovaet al., 2009; Guerra et al., 2010) and we calculatedit for a further 14 studies (Figure 3). We couldnot report SMD for one study because data werenon-parametric (Ballard et al., 2002); from anotherbecause it did not provide a summary score forquality of life, reporting on the five subscales instead(Visser et al., 2008); and in two studies becausethe data were not available (Meguro et al., 2008;Steinberg et al., 2009). We divided interventionsinto those for people with dementia living at homeand those for residents of full-time care.

Interventions for people with dementia livingat home

FA M I LY C A R E R IN T E RV E N T I O N S

Four studies, all judged to be of higher quality,tested mainly coping strategy-based interventionsfor family carers of people with dementia livingat home (Teri et al., 2005; Gavrilova et al., 2009;Gitlin et al., 2010; Guerra et al., 2010). Theseincluded psychological strategies such as promotinghelpful coping, behavioral management, effectivecommunication, and scheduling pleasant events.

Two studies, in Russia and Peru respectively,evaluated a manualized family carer intervention ofeducation and behavioral management developedfor the 10/66 study. It comprised five, half-hoursessions. In Russia, it was delivered by newlyqualified doctors to people who had been diagnosedwith dementia on average 4.5 years previously(in 2009). In Peru, it was delivered by juniorpsychologists and social workers (in 2010) toa population half of whom had mild dementia.Neither study reported a statistically significantdifference in quality of life between the interventionand usual care groups.

Gitlin et al. (2010) described a ten-sessionintervention focused on the carer, in whichoccupational therapists (OTs) interviewed carersand people with dementia. It included up to 12OTs or nurses, home or telephone contacts infour months. The intervention was tailored toindividual needs, but encompassed carer education,and trained carers to modify the home environment,engage patients in activities, and simplify tasks,and in problem-solving, communication training,and stress reduction. The mean MMSE score of

care recipients was 13.4 (SD = 8.1). Compared toa control group receiving up to three 20-minutephone calls from trained research staff, there wasno significant improvement in quality of life in theintervention group at four months.

Teri et al. (2005) trained health professionals todeliver a manualized intervention to family carersbased on behavioral management, communication,and increasing pleasant events. It involved eightweekly sessions and four telephone calls and this wascompared with usual care. The mean MMSE scoreof care recipients was 14.0 (SD = 7.0). There wasno significant difference in the SMD in quality oflife scores between groups at two or six months post-intervention (Figure 3). A significant difference inthe mean change of scores between baseline and twomonths in favor of the intervention was reported(n = 0.049, n = 83).

Summary and analysis: The pooled SESfor the post-intervention follow-up assessments ofthese four high-quality studies was 0.24 (range0.03–0.45; n = 420), suggesting that carer copingstrategy-based support is effective at improvingquality of life in people with dementia living in thecommunity. The quality of life measures included inthis analysis were self-rated (Gavrilova et al., 2009;Guerra et al., 2010), carer proxy-rated (Gitlin et al.,2008), or both (Teri et al., 2005). None of thestudies individually showed a significant effect andthe interventions were not the same, so this pooledanalysis must be interpreted cautiously.

AC T I V I T Y PROG R A M S F O R P E O P L E W I T H

D E M E N T I A A N D FA M I LY C A R E R C O P I N G

S T R ATE G Y C O M B I N E D IN T E RV E N T I O N S

Two high-quality studies evaluated individualtailored activity interventions delivered by OTsto people with dementia and their family carers,which involved goal setting and environmentalassessment, together with family carer copingstrategy modification components. Graff et al.(2007) evaluated a program of ten, one-hour homesessions conducted by an OT over five weeks.These involved goal setting and environmentalmodification. Patients (mean MMSE score 19.0)were taught to optimize compensatory andenvironmental strategies to help with daily tasks.Carers were trained in effective supervision,problem-solving, and coping strategies. People withdementia in the intervention group had higherquality of life compared to the usual care group, oneand seven weeks after the end of the intervention.

In the study by Gitlin et al. (2008), an OT madesix 1.5-hour home visits and two telephone calls;they devised 2–3 activity prescriptions for identifiedgoals (e.g. playing catch with grandchildren) and

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dementia

861

Table 1. Characteristics and validity of intervention studies involving people with dementia living in their own homes (the numbers 1–6 in the columnhead refer to the validity questions as cited in the method)

STUDY P EOPLE I NCLUDEDIN T E RVENTION/CONTRO L (n)

INTERVENTION(MORE DETAILSIN TEXT)

C O M PA R I S O NG RO U P

QUA LI T Y O FL I F E M E A S U R E(WHOCOMPLETED)

FOLLOWU P 1 2 3 4 5 6

TOTA LSCORE

.............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Ballard et al.(2002)

Severe dementia (CDRStage 3) and agitation,living in NHS nursinghomes

36/36 Aromatherapy (withlemon balm)

Placebo (sunfloweroil)

DCM (observer) PI N N Y Y Y N 3

Chapman et al.(2004)

Probable AD,1 on donepezil≥3 months, with insight,MMSE ≥12, living athome at baseline

28/26 Cognitive stimulationtherapy groups anddonepezil over a year

Donepezil alone QOL-AD (patient andcarer)

4, 8, and 12months frombaseline

Y Y Y Y Y Y 6

Chenowethet al. (2009)

Diagnosed dementia, livingin Sydney nursing homes,aged 60+ with highdependency andbehavioral problems

98 /109/82 (1) Person centeredcare (2) DCM

Usual care QUALID (observer) PI and 4months later

Y Y Y Y Y Y 6

Clare et al.(2010)

Probable AD1, MMSE≥18, on donepezil for ≥4weeks, no current majorpsychiatric disorder

23/24/22 Individual cognitiverehabilitation byOT; carer supportin implementation

(1) Relaxation(2) No treatment

QOL-AD (patient andcarer)

PI and 6months

Y Y N Y N N 3

Davis et al.(2001)

Probable AD1 recruitedfrom an AD researchcenter in Texas

19/14 Individual cognitivestimulation therapy

Unstructuredconversation andquestionning

QOL Assessment(carer)

PI N Y N N Y N 2

Gavrilova et al.(2009)

Family carers and peoplewith DSM-IV dementiadiagnosis, aged 65+recruited for 10/66 studyin Russia

30/30 5 × weekly familycarer education andbehavioralmanagementsessions

Usual care DEMQOL (patient) 6 monthspost BL

Y Y Y Y Y Y 6

Gitlin et al.(2008)

Family carers recruitedthrough media and socialservices, living with andcaring ≥4 hours/day forperson with dementia,MMSE 1–23, who canfeed self and participatein ≥2 self-care activities

30/30 OT devising activityprescriptions withpatient and carerplus carerintervention

Waiting list control QOL-AD (carer) PI Y Y Y Y Y N 5

862

C.Coo

peretal.

Table 1. Continued

STUDY P EOPLE I NCLUDEDIN T E RVENTION/CONTRO L (n)

INTERVENTION(MORE DETAILSIN TEXT)

C O M PA R I S O NG RO U P

QUA LI T Y O FL I F E M E A S U R E(WHOCOMPLETED)

FOLLOWU P 1 2 3 4 5 6

TOTA LSCORE

.............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Gitlin et al.(2010)

Family carers recruitedfrom media and socialservices, living <5 milesand caring ≥8 hours/weekfor person with probabledementia,1 MMSE <24,behavioral problem andADL dependency, no NHplacement plans

117/120 Family carer educationand communicationand problem-solvingtraining

Three telephonecalls andeducationalmaterials

QOL-AD (carer) PI and 5months later

Y Y Y Y Y Y 6

Graff et al.(2007)

Dutch memory clinicattendees, communitydwelling, stableanti-dementia drug dose,with OT goal, familycarer <once a week, nosevere behavioral problemor depression

68/67 OT intervention forfamily carer andpatient

Usual care Dementia Quality ofLife instrument(patient)

1 and 7 weeksPI

Y Y Y Y Y N 5

Guerra et al.(2010)

Family carers and peoplewith DSM-IV dementiadiagnosis aged 65+recruited for 10/66 studyin Lima, Peru

29/29 5 × weekly familycarer education andbehavioralmanagementsessions

Usual care DEMQOL (patient) 6 months postBL

Y Y Y Y Y Y 6

Lai et al.(2004)

Residents from two HongKong public NH, withDSM-IV dementiadiagnosis, able tocommunicate inCantonese, those unableto hear or see even withaids excluded

30/35/36 Reminiscence groups (1) Discussiongroup

(2) Usual care

DCM (observer) PI and 6 weeksPI

N Y Y Y Y Y 5

Logsdon et al.(2010)

Dementia diagnosis,MMSE 18+, with familycarer, aware of memoryloss, able to communicateverbally andindependently in groupsetting

96/46 Education anddiscussion groupsfor people withdementia and carers

Waiting list control QOL-AD (patient andcarer); Short Form-36

PI N N Y Y Y N 3

Meguro et al.(2008)

Probable AD,1 MMSE10–20, those with severebehavior problems oradverse effects todonepezil excluded

12/12 Unstandardizedpsychosocial groupsand donepezil

Donepezil alone QOL-AD (patient) PI N N N Y Y N 2

Quality

oflifeofpeople

with

dementia

863

Orrell et al.(2007)

DSM-IV dementiadiagnosis, living in UKresidential homes for <1month and likely to stay>6 months

12 RH/12 RH Multidisciplinaryresearch teamdevised care plans

Usual care QOL-AD (patient andcarer)

PI Y Y Y Y Y N 5

Politis et al.(2004)

US model residential homeresidents with DSM-IVdementia, apathy, GDSscore 3–5, capable ofsimple activity or briefconversation

18/18 Individual, kit-basedactivity

One to oneunstructuredintervention

ADQRL (patient) PI N Y Y Y Y N 4

Spector et al.(2003)

DSM-IV dementia, fromUK residential homes andday centers, MMSE10–24, able tocommunicate enough toparticipate

115/86 Group CognitiveStimulationTherapy

Usual activities QOL-AD (patient) PI N Y Y Y Y N 4

Steinberg et al.(2009)

Probable AD,1 MMSE ≥10,ambulatory, not living insupported housing, withcarer ≥10 hours a week

14/13 Daily exercise programfor patients andcarers

Home safetyassessment

ADQRL (patient) 6 and 12 weeksfrom BL

N Y Y Y Y N 4

Teri et al.(2005)

Probable or possible AD,1

reported by carers to have3+ agitated or depressedbehavior problemsoccurring 3+ times aweek

47/48 Family carerintervention

Usual care QOL-AD (patient andcarer)

PI 6 months N Y Y Y Y N 4

Vickrey et al.(2006)

People with dementiareceiving Medicare withfamily carer, fromCalifornian clinics andcommunity older people’sservice agencies

9/9 clinics Computerizedguideline-based caremanagement system

Usual care HUI-3 (carer) 12 and 18months

Y Y Y Y Y N 5

Visser et al.(2008)

Residents at 3 Australiancare homes, withdementia and behavioralproblems

21/23/32 Staff training and careplan development

Usual care ADQRL (patient) PI, 3 and 6months

N N N Y N N 1

1As defined by National Institute of Neurological and Communicative Disorders and Stroke (NINCDS) guidelines. ADQRL = Alzheimer’s Disease Quality-Related Life Scale; BL = baseline;CDR = Clinical Dementia Rating Scale; DCM = Dementia Care Mapping; HUI-3 = Health Utilities Index Mark 3; NH = Nursing Home; OT = Occupational Therapist; PGCMS = PhiladelphiaGeriatric Center Affect/Morale Scale; PI = Post-intervention; QOL = Quality of Life; RH = Residential Home. Validity score gives a rating of validity of studies, with higher scores indicating morevalid studies.

864 C. Cooper et al.

-1.5 -0.5 0.5 1.5

Vickery et al. (18 months) 0.24 (0.04, 0.44)

Vickery et al. (12 months) 0.13 (-0.07, 0.33)

)36.0 ,32.0-( 91.0)noitnevretni tsop( l.a te ireT

)39.0 ,38.0-( 50.0)elpmasbus ytinummoc(. la te rotcepS

)17.0 ,40.0( 73.0)elpmasbus emoh laitnediser( l.a te rotcepS

Politis et al. 0.08 (-0.58, 0.73)

Orrell et al. (patient rating) -0.25 (-0.66, 0.16)

Orrell et al. (staff rating) -0.34 (-0.62, -0.05)

Logsdon et al. 0.33 (-0.03, 0.69)

)45.0 ,34.0-( 60.0**)retal skeew 6( l.a te iaL

Lai et al. (post intervention)** -0.11 (-0.59, 0.38)

Guerra et al. 0.19 (-0.88, 1.25)

)53.1 ,36.0( 99.0)retal skeew 7( l.a te ffarG

)72.1 ,65.0( 29.0)keew 1( l.a te ffarG

)74.0 ,70.0-( 02.0)shtnom 4( )0102(.la te niltiG

)02.1 ,21.0( 66.0)8002(. la te niltiG

Gavrilova et al.* 0.53 (-0.06, 1.11)

Davis et al. -0.44 (-1.09, 0.21)

)84.1 ,50.0-( 27.0)detar-tneitap( )shtnom 6( **l.a te eralC

)29.0 ,48.0-( 40.0)detar rerac( )shtnom 6( *.*la te eralC

Clare et al.** (post intervention) (patient-rated) 0.19 (-0.43, 0.80)

)04.1 ,53.0-( 45.0)detar-rerac( )noitnevretni tsop( **l.a te eralC

Chenoweth et al.** (4 months later) -0.58 (-0.92, -0.24)

)11.0- ,57.0-( 34.0-)noitnevretni tsop( **h et al. tewonehC

Chapman et al. (12 months) 0.22 (-0.43, 0.87)

Chapman et al. (8 months) 0.30 (-0.34, 0.93)

Chapman et al. (4 months) -0.01 (-0.61, 0.59)

Figure 3. Forest plot of standardized mean differences and 95% confidence intervals.∗Adjusted for baseline differences in need for care.∗∗Comparisons are for control and intervention groups; no significant differences observed between active comparison arm and either

group.

taught the family carer relaxation. The interventionwas delivered mainly to the family carer but theyincluded the person with dementia (mean MMSEscore of 11.6; SD 8.1) as much as possible. Ascarers mastered these activities, the interventionistgeneralized the strategies to managing careproblems. The authors reported that the mean

difference, adjusted for baseline values, care recip-ient MMSE score, activities of daily living (ADL)dependency, caregiver age, gender, education, andrelationship to care recipient, between experimentaland waiting list control groups in carer-rated qualityof life scores post-intervention was not significant(p = 0.095), but we found that the unadjusted

Quality of life of people with dementia 865

SMD for this comparison was significant in favorof the intervention (Figure 3).

Summary: In two high-quality studies, qualityof life (self-rated: Graff et al., 2007; carerproxy-rated: Gitlin et al., 2008) was higher ina group receiving an activity and family carercoping strategy combined intervention than incomparison groups (pooled SES 0.84 (range 0.54–1.14); n = 191).

CO G N I T I V E ST I M U L AT I O N THERAPY (CST)Three studies evaluated Cognitive StimulationTherapy (CST); none required participants toinvolve their carer. Two studies, both rated ashigh quality, evaluated group CST (Spector et al.,2003; Chapman et al., 2004). Spector et al.(2003) evaluated 14 45-minute sessions of realityorientation and CST over seven weeks. Sessionsfocused on themes (such as childhood and food)that allowed natural reminiscence but had anadditional focus on the current day, encouraged theuse of information processing rather than factualknowledge, and included multisensory stimulation.Participants were recruited from five day centersand from 18 residential homes. The meanparticipant MMSE score was 14.4 (SD = 3.8). Inthe original analysis that included people livingat home and in care homes, quality of life washigher in the intervention than “usual activities”group post-intervention. Using data kindly providedby the authors, we calculated the SMD forcommunity dwelling residents and those in carehomes separately, and these are shown in Figure 3.

Chapman et al. (2004) recruited from thecommunity (mean MMSE 20.9; SD 3.6). Groupsessions lasted 1.5 hours, and were held weeklyfor eight weeks then monthly for the remainder ofone year. They were led by a speech and languagepathologist with three trained students. Thegroups included discussions requiring homework,interactive sessions about Alzheimer’s disease, anddiscussions using salient life stories. There wasno significant difference between the interventionand usual care control groups at four, eight, or 12months after baseline.

A trial that we rated as lower quality comparedfive one-hour sessions of individual CST with anattention control, and found no significant effect(Davis et al., 2001).

Summary: There is insufficient evidence fromtwo high-quality trials that group CST improvesquality of life in people with dementia living athome immediately post-intervention on self-rated(Spector et al., 2003) or self- and carer-rated(Chapman et al., 2004) QOL-AD scores (pooledSES 0.16; 95%CI –0.36–0.68; n = 57). Also,

individual CST did not improve quality of life inpeople with dementia in one lower-quality trial.

CA R E M A N AG E M E N T

A study that we rated as higher quality evaluatedan internet-based care management softwareprogram that generated care plan actions andrecommendations from a structured assessment(Vickrey et al., 2006). Care managers regularlyassessed patients and carers, and used the systemto coordinate guideline-recommended health andcommunity care. The mean duration sincedementia diagnosis in participants was 2.7 years.Only those with an informal carer also willing toparticipate were included.

Summary: Compared to those receiving usualcare, carer-rated quality of life had improved amongparticipants receiving the intervention 18 monthsafter its introduction.

DISCUSSION GROUPS

In a study that we rated as lower quality, Logsdonet al. (2010) evaluated nine weekly 1.5 hourmanualized, structured groups provided by localAlzheimer’s Association volunteer facilitators forpeople with dementia with an informal carer whowas also willing to participate. Carers and peoplewith dementia (mean MMSE score 23.5) mettogether and separately to discuss dementia, socialand family relationships, and planning for thefuture. In an analysis that controlled for baselinescores, MMSE, age, and sex, the interventiongroup carer-rated quality of life scores significantlyimproved, while those for the waiting list controlgroup deteriorated. We found that the SMDfor carer-rated quality of life between groupspost-intervention, unadjusted for baseline scores,was not significant. There were no significantdifferences on the SF-36 or on the patient-rated quality of life scores between groups post-intervention.

Summary: In a lower-quality study, there wasconflicting evidence about whether a discussion-based group program for people with dementia andtheir family carers improved quality of life.

IN D I V I D UA L C O G N I T I V E R E H A B I L I TATI O N

A study we rated as higher quality tested a programof eight weekly one-hour sessions described ascognitive rehabilitation, delivered by an experiencedOT (Clare et al., 2010) to people with or withoutan informal carer. The OT agreed goals withparticipants (mean MMSE score 23; SD 3.0), andsought to meet these through practical aids andstrategies, including cognitive strategies such aspractice in maintaining concentration and stress

866 C. Cooper et al.

management. Where available, carers were invitedto join the last 15 minutes of sessions to supportimplementation. The intervention was comparedto individual relaxation, delivered by the sametherapist, and to usual care.

Summary and analysis: Cognitive rehabilita-tion did not improve patient or carer-rated qualityof life in one higher-quality study.

EX E R C I S E

A higher-quality trial randomized people withdementia who had an informal carer (mean MMSE17.5; SD 5.3) and their carers to an exerciseintervention or a control group who were visitedtwice at home to discuss home safety (Steinberget al., 2009). The intervention involved three, two-hour sessions to introduce a daily exercise program,encompassing aerobic, strength and balance, andflexibility training.

Summary: Exercise therapy did not improveself-rated quality of life for people with dementialiving at home in one study.

Interventions for people with dementia livingin care homes

GROU P CSTSpector et al. (2003) included people with dementiain care homes in their trial of group CST(see earlier for more details of this study). Inour reanalysis, which included only those peoplewith dementia living in care homes, there wasa significant difference between mean self-ratedquality of life scores of intervention and usual caregroups immediately post-intervention (Figure 3).

Summary: Group CST improved self-ratedquality of life for people with dementia living in carehomes in one study.

STA F F T R A I N I N G A N D IN D I V I D UA L I Z E D

R E S I D E N T C A R E P L A N S

We found three studies in this category (Orrellet al., 2007; Visser et al., 2008; Chenoweth et al.,2009), and rated two as higher quality (Orrellet al., 2007; Chenoweth et al., 2009). Orrellet al. (2007) describe a 20-week intervention inwhich researchers visited care homes to discussthe home environment, procedures, and residents’unmet needs. The unmet needs of residents weresummarized and fed back to the homes in theintervention group as individualized care plans, andthe researcher visited for two hours a fortnight toreview the plans. Quality of life did not improve inresidents in the intervention group compared to theusual care control group.

Chenoweth et al. (2009) taught care staff theprinciples of person-centered care. This teaches thatfeelings persist despite cognitive impairment, andshould be acknowledged during social interactionsto help preserve personhood and build meaningfulrelationships. Training included a two-day initialcourse, two site visits, and regular telephone contactduring the four-month intervention. In a secondintervention group, two of the authors carriedout DCM, then developed person-centered careplans with home staff for residents. DCM is anobservational tool that examines the care of peoplewith dementia from their viewpoint. There were nosignificant differences between these interventiongroups and a third, usual care group in residentquality of life immediately after the intervention oreight months later.

In a study we judged as lower quality, Visser et al.(2008) evaluated an education program of eight,twice-weekly sessions, for nursing home staff. Theseincluded information about dementia, behavioralmanagement, and workshops where staff developedindividualized care plans. A second interventiongroup received this training and a half-hour peersupport session after each teaching session. Nodifference in quality of life was reported betweenthese groups and the usual care control group.

Summary: There is no evidence that interven-tions that guide the development of individualizedcare plans by care home staff increase the qualityof life of residents with dementia. The pooled SESfor the post-intervention quality of life ratings of thetwo higher-quality studies suggested that quality oflife of residents (observer: Chenoweth et al., 2009;or staff-rated: Orrell et al., 2007) was more likelyto improve with usual care (–0.38: range –0.59 to–0.17; n = 350).

OT H E R I N T E RVE N T I O N S

Higher-quality studies have evaluated kit-basedactivities (Politis et al., 2004) and reminiscencegroups (Lai et al., 2004). Neither reporteda significant difference between control andintervention groups in quality of life at follow-up. Politis et al. (2004) evaluated a standardized,individual kit-based activity in a care home. In three30-minute sessions per week for four weeks, patientschose from five activities, each of which involvednaming, counting, and quiz questions based on achosen topic. The control group received individualtime of an equivalent duration. Lai et al. (2004)compared six half-hour reminiscence groups, whichused a life story approach, to a general discussioncomparison group, in two nursing homes.

In a lower-quality study, Ballard et al. (2002)compared aromatherapy with lemon balm and

Quality of life of people with dementia 867

placebo oil, applied by a care assistant twice daily forfour weeks, in people with dementia and agitationliving in nursing homes. They reported that thechange in median percentage time that participantsspent engaged in constructive activities increasedsignificantly and time spent socially withdrawndecreased significantly in the active treatment groupcompared with the placebo group. The raters werenot blind as they could smell the oil (unlike in asubsequent trial by the same authors in which theraters wore nose clips; Burns et al., 2011).

In a second lower-quality study, Meguroet al. (2008) took account of previous interestswhen allocating psychosocial interventions, whichincluded flower arranging, cooking, calligraphy,as well as reminiscence and reality orientation,delivered over a year. Quality of life was significantlyhigher in the intervention group than the usual carecontrol group at follow-up.

Summary: In low-quality studies, aromather-apy with lemon balm and an unstandardizedpsychosocial intervention program were associatedwith improved self-rated quality of life immediatelypost-intervention. Also, high-quality studies haveevaluated the impact of reminiscence groups andkit-based activities. Neither reported a significanteffect.

Discussion

We found preliminary evidence that coping strategy-based support for family carers with or without atailored activity component directed at the personwith dementia improved the quality of life of peoplewith dementia living at home. While the individualstudies of the carer coping-based support alonedid not indicate significant benefits to quality oflife, the pooled results of four studies suggested abeneficial but small effect size immediately after theintervention. This type of intervention is effectiveat improving carer mental health (Gallagher-Thompson et al., 2001) and it is encouraging thatit might also help in improving quality of lifeof people with dementia. The two studies thatincluded a tailored activity component reportedhigher effect sizes suggesting that the combinationof tailored activities for people with dementia andcarer coping strategy-based support may be themost effective intervention for people with dementialiving at home, based on existing evidence. In onehigher-quality study, a care management systemthat helped professionals to deliver evidence-basedcare consistently to people with dementia livingat home reported better quality of life 18 monthsafter its introduction (Vickrey et al., 2006). Most

of the interventions we found to be effective couldonly be accessed by people with dementia with afamily carer, suggesting that the development andevaluation of interventions to improve the quality oflife of people with dementia without a family carerare needed.

Group CST, evaluated in one high-quality study,and an unstandardized psychosocial interventionprogram evaluated in one lower-quality studywere the only effective interventions in promotingquality of life of people with dementia living incare homes. Both studies only evaluated patientsimmediately post-intervention. We suggest a trialof the longer-term effects of group CST for carehome residents is now warranted. Two studies thatevaluated interventions to help care home staffdevelop individualized care plans found that qualityof life was higher in the usual care comparedwith intervention groups. In neither study wereresults unequivocally negative – Orrell et al. (2007)found this for carer but not patient-rated qualityof life, while Chenoweth et al. (2009) found thatthe intervention decreased patient agitation – butnonetheless our review would suggest that trials ofinterventions to improve quality of life of peoplewith dementia in care homes should bear in mindthe possibility of harm as well as benefit. As in drugtreatment, an intervention might not only improveor have no effect on one domain but also harmoverall quality of life.

Coping strategy-based support for family carersthat included training in behavioral management,problem-solving, and communication togetherwith tailored activities programs for people withdementia appeared to be effective at improvingthe quality of life of people with dementia livingat home with a family carer. Therefore, a similarapproach might help those looked after by paidcarers both in the community and in care homes,although the high staff turnover and the distinctnature of the relationship between a paid carer and aperson with dementia would necessitate substantialmodifications to intervention content and delivery.Adapting these interventions specifically to targetquality of life might increase their effectiveness. Werecommend a trial of a modified coping strategyand activities-based intervention for paid carers, todetermine whether the benefits of this approach canbe extended to people with dementia looked afterby paid carers in care homes or the community.

All but three of the interventions we reviewed(Lai et al., 2004; Politis et al., 2004; Orrell et al.,2007) demonstrated positive effects on outcomesother than quality of life. It might be that effectson quality of life take longer to manifest. Quality oflife tended to improve over time in the interventioncompared to the comparison groups in the studies

868 C. Cooper et al.

that measured this more than once (Vickrey et al.,2006; Graff et al., 2007; Clare et al., 2010).These interventions involved a carer where availableand gave strategies for coping with the effects ofdementia. If these interventions are successful, thequality of life of the people who received them mighttherefore continue to diverge over time from thosewho did not.

LimitationsWe only included papers in English. We meta-analyzed studies with similar interventions butinevitably there was heterogeneity in the studiescombined. Some studies asked the person withdementia about quality of life, others asked familyor professional carers, some asked both, and someobserved it directly. Where results allowed, we onlycombined quality of life scores measured in the sameway and where there was heterogeneity in the sourceof quality of life ratings combined in our analyseswe stated this explicitly. Different instruments wereused to measure quality of life, introducing furtherheterogeneity.

All of the higher-quality studies used a quality oflife measure with established validity and reliability.Quality of life measures can be sensitive tochange (Hoe et al., 2009), although they may notdetect small changes that are meaningful to theperson with dementia. Responses of family carers,people with dementia, and health professionalsdiverged in the included studies. Developmentof quality of life instruments with establishedpsychometric properties, and growing appreciationof the importance of measuring it have been majorrecent advances. Greater consensus about how todefine quality of life and who should rate it indementia would, in our view, be an important nextstep.

Effect sizes were generally small; although ourmeta-analyses for coping strategy-based family carerinterventions with or without activity programs forthe person with dementia demonstrated significanteffects, few of the individual studies did so.It is possible that with larger sample sizes, wemight have found evidence of efficacy for otherinterventions on meta-analysis. We did not findany information about cost effectiveness, and thismay be relatively low given the small effect sizesand the complexity of the interventions. We didnot investigate pharmacological interventions. Lowquality of life has frequently been associatedwith depression and, in some studies, with lowercognition, so cognitive enhancers or antidepressantmedication might improve quality of life.

Participants in the interventions for people livingat home mostly had mild or moderate dementia

(mean MMSE scores from 11.6 to 23.9). Amongthe studies reporting interventions for people livingin care homes, one did not report dementia severity(Visser et al., 2008), two excluded people withsevere dementia (MMSE <10; Spector et al.,2003; Meguro et al., 2008), and in the remainderparticipants had, on average, severe dementia. Weseparated results into those for people living in carehomes and those for people living at home, butwe did not report results for stages of dementiaseparately and it is possible that quality of life may beconceptually different in mild, moderate, and severedementia. None of the papers selected participantson the basis of their quality of life scores before theinterventions, so there may have been floor or ceilingeffects. Some studies have reported a relationshipbetween lower quality of life and worse cognition(Cordner et al., 2010); this would suggest thatquality of life might decrease over time, although aswe compared intervention groups with controls overthe same time periods this would not have affectedour results.

Conclusions

There is a lack of definitive evidence for anyintervention that increases quality of life or well-being of people with dementia. Nonetheless, lackof evidence of efficacy is not evidence of lackof efficacy. Coping strategy-based family carerinterventions and tailored activities for the personwith dementia and their family carers, and a systemof care management, may improve quality of life ofpeople with dementia living at home. In contrast theonly high-quality evidence we found that improvedquality of life among care home residents withdementia was a single study of group CST. Furtherresearch is needed, to develop and test interventionsto increase quality of life among people withdementia and to test their cost effectiveness.

Conflict of interest

DB has received grant funding from NIDA andNIMH, National Institutes of Health, USA. GLand LT are each co-authors of one of thereviewed papers. GL has received funding fromLundbeck. HB is grant support/sponsored speakeror advisory board member of NHMRC, AustralianCommonwealth Department of Health and Ageing,Pfizer, Eisai, Janssen, Novartis, Lundbeck, Lilly,Medivation, Sanofi, Prana (none relevant to thispaper). CGL has received grant support (researchor continuing education) from NIMH, NIA,Associated Jewish Federation of Baltimore, Wein-berg Foundation, Forest, Glaxo-Smith-Kline, Eisai,

Quality of life of people with dementia 869

Pfizer, Astra-Zeneca, Lilly, Ortho-McNeil, Bristol-Myers, Novartis, National Football League, andElan; consultant/advisor for Astra-Zeneca, Glaxo-Smith Kline, Eisai, Novartis, Forest, Supernus,Adlyfe, Takeda, Wyeth, Lundbeck, Merz, Lilly,Pfizer, Genentech, Elan, NFL Players Association,NFL Benefits Office; honorarium or travel supportfrom Pfizer, Forest, Glaxo-Smith Kline, HealthMonitor. CK has undertaken paid lectures, advisoryboard membership, and received consultancy feesfrom several pharmaceutical companies includingLilly Lundbeck and Pfizer Eisai; grant fundingfrom Lundbeck; expert testimony on behalf ofGSK. PR has provided legal testimony for JanssenPharmaceutica, and received grant support fromNIMH and NIA.

Description of authors’ roles

CC and GL conceived and designed the study; CCanalyzed the data and prepared the first draft; allauthors were involved in the interpretation of dataand preparation of the paper.

Acknowledgments

We thank the authors of included studies whoprovided additional data.

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