This project, funded through the NIHR School for Social Care Research investigated home care (domiciliary care commissioned through local authority social care) specifically for dementia.
The study examined the components and effectiveness of different approaches to home care provision, and the views of home care providers and informal carers of those with dementia. We incorporated data from a related research programme on dementia home support to supplement primary data collections in this study.
This was a mixed methods study with four sub-studies. A Public, Patient and Carer Involvement reference group informed work across the study. First, a literature review and evidence synthesis identified components of home care in published international studies and elicited evidence about their effectiveness. Second, a naturalistic study across English local authority areas collected data from carers and people with dementia in its later stages on circumstances, service receipt and outcomes, in terms of functioning and well-being. Third, we undertook interviews with home care providers to elicit their views on the challenges and issues in providing home care specifically to those with dementia. Fourth, we elicited the views of informal carers through a co-designed electronic survey, constructed in partnership with carers of those with dementia.
Research evidence of home care delivery and effectiveness for people with dementia is lacking. A synthesis of the literature revealed only 14 international studies, 5 in the UK, with any effectiveness evidence. Studies in the literature were of specialist home care, none contained only assistance with personal care, characteristic of traditional home care to older people in general. Instead, studies showed mixes of various components. Most contained respite care with positive effects on carer health/burden, nursing home admission, and mortality. Evidence for effects of social engagement (befriending) was limited. Existence of more components was not necessarily associated with better outcomes.
A co-produced study of informal carers’ views showed current home care as not tailored sufficiently towards the individual needs of people with dementia. Traditional ‘time and task’ delivery does not provide continuity and often does not work alongside family carers. There are issues for better training and different contractual arrangements with local authorities.
An analysis of providers’ views revealed issues around a sustainable workforce for supporting people with dementia at home. Views were that providers could take greater responsibility for assessment and care planning and that they were under pressure to create a respected and skilful workforce, in the context of financial austerity.
Data on the effectiveness of specialist home care approaches occurring naturally in a cohort of people with dementia and their carers living at home in the later stages of the condition revealed some positive findings. Both traditional home care, offering support primarily with personal care, and more specialist approaches, were relatively successful in keeping people with dementia at home. Enhanced home care, however, assisting with a full range of personal support needs, was particularly effective in maintaining people at home.