REMCARE: reminiscence groups for people with dementia and their family caregivers - effectiveness and cost-effectiveness pragmatic multicentre randomised trial.

OBJECTIVES The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care. DESIGN A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point). SETTING Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings. PARTICIPANTS A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study. INTERVENTIONS The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group. MAIN OUTCOME MEASURES The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties. RESULTS The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed. CONCLUSIONS This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions. TRIAL REGISTRATION Current Controlled Trials ISRCTN42430123. FUNDING This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 16, No. 48. See the HTA programme website for further project information.

[1]  P. Schweitzer Reminiscence in Dementia Care , 2013 .

[2]  Jeffrey Dean Webster,et al.  The Art and Science of Reminiscing : Theory, Research, Methods, and Applications , 2013 .

[3]  A. Spector,et al.  Cognitive stimulation to improve cognitive functioning in people with dementia. , 2012, The Cochrane database of systematic reviews.

[4]  D Russell,et al.  Generalized method for adaptive randomization in clinical trials , 2011, Statistics in medicine.

[5]  M. Orrell,et al.  EQ-5D as a quality of life measure in people with dementia and their carers: evidence and key issues. , 2011, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[6]  Bob Woods,et al.  Nonpharmacological Therapies in Alzheimer’s Disease: A Systematic Review of Efficacy , 2010, Dementia and Geriatric Cognitive Disorders.

[7]  C. Gudex,et al.  Consequences from use of reminiscence - a randomised intervention study in ten Danish nursing homes , 2010, BMC geriatrics.

[8]  Chia-Jung Hsieh,et al.  Reminiscence Group Therapy on Depression and Apathy in Nursing Home Residents With Mild-to-moderate Dementia , 2010 .

[9]  J. Jetten,et al.  The social treatment: the benefits of group interventions in residential care settings. , 2010, Psychology and aging.

[10]  M. Mugford,et al.  Befriending carers of people with dementia: randomised controlled trial , 2008, BMJ : British Medical Journal.

[11]  E. Bruce,et al.  Remembering Yesterday, Caring Today: Reminiscence in Dementia Care: A Guide to Good Practice , 2008 .

[12]  M. Mugford,et al.  Does befriending by trained lay workers improve psychological well-being and quality of life for carers of people with dementia, and at what cost? A randomised controlled trial. , 2008, Health technology assessment.

[13]  R. Woods Non‐Pharmacological Techniques , 2008 .

[14]  Jing-Jy Wang,et al.  Group reminiscence therapy for cognitive and affective function of demented elderly in Taiwan , 2007, International journal of geriatric psychiatry.

[15]  Mike Pringle,et al.  Mental Capacity Act 2005 , 2007, BMJ : British Medical Journal.

[16]  E. Tadaka,et al.  Effects of reminiscence group in elderly people with Alzheimer disease and vascular dementia in a community setting , 2007 .

[17]  David Parkin,et al.  Economic Analysis in Health Care , 2007 .

[18]  Martin Knapp,et al.  Cognitive stimulation therapy for people with dementia: cost-effectiveness analysis , 2006, British Journal of Psychiatry.

[19]  M. Orrell,et al.  Quality of life of people with dementia in residential care homes , 2006, British Journal of Psychiatry.

[20]  Gill Livingston,et al.  Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia. , 2005, The American journal of psychiatry.

[21]  M. Buxton,et al.  Comparison of general practitioner records and patient self-report questionnaires for estimation of costs , 2005, The European Journal of Health Economics.

[22]  Randall R. Robey,et al.  An Introduction to Clinical Trials , 2005 .

[23]  A. Spector,et al.  Reminiscence therapy for dementia. , 2005, The Cochrane database of systematic reviews.

[24]  E. Tadaka,et al.  A randomized controlled trial of a group care program for community-dwelling elderly people with dementia , 2004 .

[25]  Andrew Briggs,et al.  Cost-effectiveness acceptability curves--facts, fallacies and frequently asked questions. , 2004, Health economics.

[26]  M Orrell,et al.  Cognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementia. , 2003, The Cochrane database of systematic reviews.

[27]  L Thorgrimsen,et al.  Whose Quality of Life Is It Anyway?: The Validity and Reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) Scale , 2003, Alzheimer disease and associated disorders.

[28]  Bob Woods,et al.  Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia , 2003, British Journal of Psychiatry.

[29]  Henry Brodaty,et al.  Meta‐Analysis of Psychosocial Interventions for Caregivers of People with Dementia , 2003, Journal of the American Geriatrics Society.

[30]  R. Woods,et al.  Support in the community for people with dementia and their carers: a comparative outcome study of specialist mental health service interventions , 2003, International journal of geriatric psychiatry.

[31]  G. Storms,et al.  The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric patients. , 2002, Psychology and psychotherapy.

[32]  Laura E. Gibbons,et al.  Assessing Quality of Life in Older Adults With Cognitive Impairment , 2002, Psychosomatic medicine.

[33]  C. Homer Using the Zelen design in randomized controlled trials: debates and controversies. , 2002, Journal of advanced nursing.

[34]  Martin Orrell,et al.  Evaluating reminiscence for people with dementia: A pilot study. , 2002 .

[35]  C. Bell,et al.  The Association Between Caregiver Burden and Caregiver Health-Related Quality of Life in Alzheimer Disease , 2001, Alzheimer disease and associated disorders.

[36]  N. Tarrier,et al.  Effectiveness of cognitive–behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer's disease , 2000, British Journal of Psychiatry.

[37]  Paul Kind,et al.  UK population norms for EQ-5D , 1999 .

[38]  Martin Orrell,et al.  The development of a valid and reliable scale for rating anxiety in dementia (RAID) , 1999 .

[39]  H. Tuokko,et al.  Home alone with dementia , 1999 .

[40]  N. Tarrier,et al.  Determinants of carer stress in Alzheimer's disease , 1998, International journal of geriatric psychiatry.

[41]  T. Jacob,et al.  A feasibility study of videotaping to assess the relationship between distress in Alzheimer's disease caregivers and their interaction style , 1997 .

[42]  C. Fairburn,et al.  Do neuroleptic drugs hasten cognitive decline in dementia? Prospective study with necropsy follow up , 1997, BMJ.

[43]  A. Flint,et al.  VALIDATION OF THE HOSPITAL ANXIETY AND DEPRESSION SCALE AS A MEASURE OF SEVERITY OF GERIATRIC DEPRESSION , 1996 .

[44]  R. Bucks,et al.  Assessment of activities of daily living in dementia: development of the Bristol Activities of Daily Living Scale. , 1996, Age and ageing.

[45]  A. B. Prasad,et al.  British National Formulary , 1994 .

[46]  L. Jacobson,et al.  Study of teenage care in one general practice. , 1993, The British journal of general practice : the journal of the Royal College of General Practitioners.

[47]  Douglas G. Altman,et al.  Practical statistics for medical research , 1990 .

[48]  A D Baddeley,et al.  The autobiographical memory interview: a new assessment of autobiographical and personal semantic memory in amnesic patients. , 1989, Journal of clinical and experimental neuropsychology.

[49]  G. Alexopoulos,et al.  Cornell scale for depression in dementia , 1988, Biological Psychiatry.

[50]  C. P. Hughes,et al.  A New Clinical Scale for the Staging of Dementia , 1982, British Journal of Psychiatry.

[51]  D. Goldberg,et al.  A scaled version of the General Health Questionnaire , 1979, Psychological Medicine.

[52]  J. R. Landis,et al.  The measurement of observer agreement for categorical data. , 1977, Biometrics.

[53]  S. Folstein,et al.  “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician , 1975 .

[54]  S. Dixon,et al.  Incorporating carer effects into economic evaluation , 2012, PharmacoEconomics.

[55]  Martin Knapp,et al.  Peer support for family carers of people with dementia, alone or in combination with group reminiscence in a factorial design: study protocol for a randomised controlled trial , 2011, Trials.

[56]  F. Gibson The past in the present : using reminiscence in health and social care , 2004 .

[57]  N. Qizilbash Evidence based dementia practice , 2002 .

[58]  S. Orbell,et al.  Measuring the outcome of psychosocial intervention for family caregivers of dementia sufferers: A factor analytic study , 1997 .

[59]  R. Woods,et al.  Evaluating the impact of reminiscence on older people with dementia , 1995 .

[60]  Martin Knapp,et al.  Costing psychiatric interventions. , 1992 .

[61]  C. Brewin,et al.  Measuring mental health needs , 1992 .

[62]  V. Leirer,et al.  Development and validation of a geriatric depression screening scale: a preliminary report. , 1982, Journal of psychiatric research.