Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Paul Clarkson, David Challis, Jane Hughes, BRENDA ROE, Linda Davies, Ian Russell, Martin Orrell, Fiona Poland, David Jolley, Narinder Kapur, Catherine Robinson, Helen Chester, Sue Davies, Caroline Sutcliffe, Julie Peconi, Rosa Pitts, Greg Fegan, Saiful Islam, Vincent Gillan, Charlotte EntwistleRebecca Beresford, Michele Abendstern, Clarissa Giebel, Saima Ahmed, Rowan Jasper, Adeela Usman, Baber Malik, Karen Hayhurst

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    Abstract

    Background: Over half of people with dementia live at home. We know little about what home support
    could be clinically effective or cost-effective in enabling them to live well.
    Objectives: We aimed to (1) review evidence for components of home support, identify their presence
    in the literature and in services in England, and develop an appropriate economic model; (2) develop
    and test a practical memory support package in early-stage dementia, test the clinical effectiveness
    and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based
    on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home
    support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and
    later-stage dementia.
    Design: We undertook (1) an evidence synthesis, national surveys on the NHS and social care and
    an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive
    Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing
    memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside
    process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and
    (3) consultation with experts, staff and carers to explore the balance between informal and paid
    home support using case vignettes, discrete choice experiments to explore the preferences of people
    with dementia and carers between home support packages in early- and later-stage dementia, and
    cost–utility analysis building on trial and observational study.
    Setting: The national surveys described Community Mental Health Teams, memory clinics and social
    care services across England. Recruitment to the trial was through memory services in nine NHS trusts
    in England and one health board in Wales. Recruitment to the observational study was through social
    services in 17 local authorities in England. Recruitment for the vignette and preference studies was
    through memory services, community centres and carers’ organisations.
    Participants: People aged > 50 years with dementia within 1 year of first attendance at a memory
    clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months
    of a review of care needs were eligible for the observational study. We recruited staff, carers and
    people with dementia for the vignette and preference studies. All participants had to give written
    informed consent.
    Main outcome measures: The trial and observational study used the Bristol Activities of Daily Living
    Scale as the primary outcome and also measured quality of life, capability, cognition, general
    psychological health and carers’ sense of competence.
    Methods: Owing to the heterogeneity of interventions, methods and outcome measures, our evidence
    and economic reviews both used narrative synthesis. The main source of economic studies was the
    NHS Economic Evaluation Database. We analysed the trial and observational study by linear mixed
    models. We analysed the trial by ‘treatment allocated’ and used propensity scores to minimise confounding
    in the observational study.
    Results: Our reviews and surveys identified several home support approaches of potential benefit.
    In early-stage dementia, the DESCANT trial had 468 randomised participants (234 intervention
    participants and 234 control participants), with 347 participants analysed. We found no significant effect
    at the primary end point of 6 months of the DESCANT intervention on any of several participant outcome
    measures. The primary outcome was the Bristol Activities of Daily Living Scale, for which scores range
    from 0 to 60, with higher scores showing greater dependence. After adjustment for differences at baseline,
    the mean difference was 0.38, slightly but not significantly favouring the comparator group receiving
    treatment as usual. The 95% confidence interval ran from –0.89 to 1.65 (p = 0.56). There was no evidence
    that more intensive care packages in later-stage dementia were more effective than basic care. However,
    formal home care appeared to help keep people at home. Staff recommended informal care that cost 88%
    of formal care, but for informal carers this ratio was only 62%. People with dementia preferred social and
    recreational activities, and carers preferred respite care and regular home care. The DESCANT intervention
    is probably not cost-effective in early-stage dementia, and intensive care packages are probably not
    cost-effective in later-stage dementia. From the perspective of the third sector, intermediate intensity
    packages were cheaper but less effective. Certain elements may be driving these results, notably
    reduced use of carers’ groups.
    Limitations: Our chosen outcome measures may not reflect subtle outcomes valued by people
    with dementia.
    Conclusions: Several approaches preferred by people with dementia and their carers have potential.
    However, memory aids aiming to affect daily living activities in early-stage dementia or intensive
    packages compared with basic care in later-stage dementia were not clinically effective or cost-effective.
    Future work: Further work needs to identify what people with dementia and their carers prefer and
    develop more sensitive outcome measures.
    Study registration: Current Controlled Trials ISRCTN12591717. The evidence synthesis is registered
    as PROSPERO CRD42014008890.
    Funding: This project was funded by the National Institute for Health Research (NIHR) Programme
    Grants for Applied Research programme and will be published in full in Programme Grants for Applied
    Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information.









    Original languageEnglish
    Pages (from-to)1-132
    Number of pages132
    JournalProgramme Grants for Applied Research
    Volume9
    Issue number6
    Early online date30 Jun 2021
    DOIs
    Publication statusPublished - 30 Jun 2021

    Keywords

    • Dementia

    Research Institutes

    • Health Research Institute

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