Author
O'MALLEY Lisa; CROUCHER Karen;
Title
Housing and dementia care: a scoping review of the literature .
Journal citation/publication details
Health and Social Care in the Community, 16(6), November 2005, pp.570-577.
Summary
This scoping study was carried out using systematic methods although it is not designed to be a full scale systematic review in that it does not examine study quality. It describes the UK evidence base on the provision of housing for older people with dementia, and also draws on ‘limited aspects' of overseas research to illuminate gaps in the UK literature. These gaps are significant, especially in relation to end-of-life care and the effectiveness of integrated and segregated provision within residential care.
Context
Throughout the western world, including the UK , the population is ageing and the incidence of dementia is very likely to rise. One aspect of care planning for older people with dementia that has been relatively little addressed is their housing needs and preferences, and this review aims to survey what the UK literature reveals.
Methods
The scoping study draws on ‘established methods' (the systematic review guidance published by the Centre for Reviews and Dissemination in 2001), adapted by the authors.
What sources were used?
The following sources were searched: the Cochrane Library; Medline; Social Sciences Citation Index; DH Data, Helmis and the King's Fund library catalogue [these three databases together comprise the HMIC (Health Management and Policy Database)]; Sociological Abstracts, SIGLE (System of Information on Grey Literature in Europe) and PsycINFO. Websites of ‘key' but unspecified mental health organisations were searched, as were ‘main' (unspecified) journals and the bibliographies of selected studies.
What search terms/strategies were used?
All the main terms associated with the medical definition of dementia were used, with a combination of ‘housing', ‘long term care', ‘accommodation', ‘residential', ‘home care', ‘continuing care', ‘adult placement' and ‘group homes'.
What criteria were used to decide on which studies to include?
Research studies addressing the question ‘what is known about housing and care provision for older people with dementia?' were eligible, but issues to do with carers and with the use of drugs and other therapies were specifically excluded. Non-empirical studies of all kinds were excluded, as were theses.
Who decided on their relevance and quality?
The searches delivered 1,675 references. Titles and abstracts were scanned and 265 papers read in more detail before final decisions on inclusion were made. Quality assessment was not relevant given the scoping nature of the review.
How many studies were included and where were they from?
175 studies and reports were included (a detailed list is available from the lead author at the Department for Social Policy and Social Work, University of York), primarily from the UK but also including overseas material on issues where little UK research appears to have been done. However, the discussion relates to a much smaller number of studies, summarised in Tables 1 and 2.
How were the study findings combined?
The synthesis is narrative, with the findings presented in relation to ‘ordinary/domestic' and ‘special/collective' housing.
Findings of the review
Particular emphasis is placed on gaps in the UK research literature, and the authors also discuss methodological issues. Much dementia research in the UK has been conducted within ‘a scientific or medical paradigm', but studies tend to have limited sample sizes and need to be more rigorous in reporting respondent characteristics. In addition, the contribution of qualitative research in improving understanding of housing and care issues should not be underestimated.
Ordinary/domestic settings
The UK evidence base in this area consists of ‘limited and inconsistent survey data'. In respect of support services, attention has tended to focus on carers rather than people with dementia, but there is some evidence to suggest that people with quite severe dementia can be maintained at home with appropriate support. However, there is a noticeable lack of large scale studies of the effectiveness or cost-effectiveness of support services, and none that focus on people with dementia who live alone.
Similarly, no UK studies relating to building design issues were identified, although there are some that deal with hazard elimination. These generally show that occupational therapy-based adaptations and visits can be helpful in maintaining people with dementia at home. Studies of the potential of sheltered housing to accommodate people with dementia (as distinct from residents who later develop dementia) are also sparse. While there is considerable policy interest in very sheltered housing for this population, there ‘is a clear and urgent need for research' to examine its role and effectiveness.
Special/collective settings
The percentage of residents in care homes and other residential settings who have dementia is increasing, and there is a larger evidence base here that falls into three main areas: reasons for institutionalisation; different types of special or collective setting; and design in care settings.
Despite policy efforts to maintain people at home for as long as possible, most of those who suffer from dementia eventually make the transition to residential care as the result of behavioural problems, cognitive decline or increasing carer burden. More longitudinal studies to explore pathways of housing and care are needed, including exploration of issues such as inappropriate placement in care (i.e. with lower levels of need than deemed appropriate for the placement), and the possibility that people may have to make more than one move within residential care as their dementia progresses.
No full scale evaluations or multi-site comparisons of different types of special/collective housing were identified, and more research is needed in this area as well. In contrast, the literature is ‘replete' with design guides and practical advice based on ‘a high degree of consensus over appropriate design features'. However, crucial aspects remain unexplored by evaluators, including the relative effectiveness of particular design features and the optimum size for residential units.
The UK evidence base is particularly bereft of studies on the integration or segregation of demented and non-demented residents in care homes, and on the provision of end-of-life care. Studies from overseas suggest that integration is both unpopular and problematic for non-demented residents, but little research has been done on whether segregation is in the interests of those who are demented. Research from the USA on end-of-life care was varied in nature and orientation, and included no formal evaluations. However, it does shed some light on the contradictory issues surrounding the relative merits of hospice care as against the provision of palliative care in an individual's own home or long term care setting.
Despite the growing financial burden of dementia care, only four UK cost-based studies were identified, and these give little indication of the relative cost-effectiveness of different types of residential care. The same is true of home care vs. residential care, although one recent study does suggest – contrary to received wisdom – that residential care is the cheaper option.
Authors' conclusions
One of the main findings from the scoping study might be that a range of accommodation types is needed to match the needs of people with dementia at different stages of the disease. However, this does ‘little to ease the overriding concern that the current evidence base does little to illuminate what works in relation to any of these, or at what stage in the disease different approaches are appropriate'. The main recommendations are for multi-site, multi-stage comparative evaluations of different types of housing with care provision, as well as the filling of particularly glaring research gaps on end-of-life care and the integration or segregation of people with dementia in residential care settings.
Implications for policy or practice
None are discussed.
Related references
None