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

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.