Effective Home Support in Dementia: Components, Impact and Cost of Tertiary Prevention.

The Effective Home Support in Dementia Care programme ran from 2013 to 2020 and was funded by a National Institute for Health Research (NIHR) Programme Grant for Applied Research. The project was a collaboration between The University of Manchester, Pennine Care NHS Foundation Trust and partner universities.

We considered models of best practice from the literature, the views of people with dementia and their carers, what is currently delivered nationally and the new models that could be provided.

There were two primary, large-scale research projects as part of the programme:

•The Dementia Early Stage Cognitive Aids New Trial (DESCANT) randomised trial investigating the use of memory aids supported by a Dementia Support Practitioner for people in early stage dementia. This RCT recruited 468 people with dementia and their carers across 10 NHS Trust memory services in England and Wales.

•An observational (naturalistic) study, examining the usual care received by people in later-stage dementia across 17 local authority areas in England. We interviewed a very large group of people with dementia and their carers, living at home, at two time points, six-months apart. This was to look at their health, quality of life and how they coped at home. We also asked them about all services they had received into the home – from professionals, hospitals and the voluntary sector, amongst others. We interviewed 518 people with dementia and their carers with 389 of these also completing the six-month follow up interview.

This NIHR Programme finished in April 2020. Outputs and dissemination of findings to participants, NHS Trusts involved, and commissioners and policy makers in health and social care is now ongoing.

Health and social care decision-makers should direct attention to tailoring services to the expressed preferences of people with dementia and their carers. People with dementia most value: emotional support; access to community facilities; health promotion advice, information and signposting; and relaxation techniques. Carers value: aids and adaptations; home care; support in coping with difficult behaviour and agitation; emotional support; access to community facilities; health promotion; information and signposting; relaxation; and respite care.

Decision-makers should seek to combine these services in different ways depending on changing needs. Whilst the NHS and social care already provide many of these approaches to helping people with dementia ‘live well’, there might be more benefit in concentrating on approaches that are particularly effective: those combining education, social support and helping carers cope with difficult behaviour. Modifying the immediate environment around the person with dementia is particularly valuable as is ensuring services are coordinated together. Home care, commissioned by local authority social care, is particularly effective at helping people with dementia remain at home and appears to operate appropriately in providing more intensive support to achieve this. It should be prioritised, despite the resource constraints currently operating within social care and carers value it.

Providing memory aids to people at early stages of dementia, although valued, does not help maintain their daily living activities to a sufficient extent and scarce resources might be better directed elsewhere. In later stage dementia, combining more services together, to help the person stay at home and support carers, is not necessarily better. Much depends on people’s specific needs. It would be useful to continue to commission care from the third sector – Dementia Support Workers, drop-in centres and tailored support to carers. The evidence is that the third sector may provide this more cheaply, but this is not necessarily more effective in maintaining quality of life.