How viable is it for people with dementia to continue living independently? Melanie Henwood reports on research into extra care housing
Title: “Extra Care” Housing and People with Dementia: A scoping review of the literature 1998-2008, Housing 21 (2009), on behalf of the Housing and Dementia Research Consortium with funding from Joseph Rowntree Foundation.
Author: Rachael Dutton
Institutions: Housing 21
The report provides a literature review of people with dementia living in extra care housing (ECH) – also variously known as “housing with care” and “very sheltered housing”. The Housing and Dementia Research Consortium (HDRC) is made up of four housing associations which promote housing with care for people with dementia. The purpose of the review was to:
● To inform policy and practice by looking at what works.
● To highlight gaps where further knowledge and research are required.
The scoping review established inclusion criteria to identify studies and literature produced between 1999 and March 2009. It included UK published research and international sources (particularly from the US and Australia). In addition, unpublished and “grey” material was also identified.
Studies were included if they related to “people with dementia or memory loss who are living in a self-contained unit (including a bedroom, bathroom, living area and kitchen) within a complex providing flexible person-centred care services within an ethos of homeliness, choice, independence, privacy, and minimising the need to move.”
More than 2,000 references were initially identified; 323 met the inclusion criteria and 123 references were ultimately included in the review.
It was clear that the evidence base in the UK is thin, with few studies having been undertaken in the area of extra care housing for people with dementia. By contrast, there is a considerable body of evidence from the US (based on the model of “assisted living”), although not all of it is directly comparable or focuses only on people living in extra care facilities.
The review highlights the positive finding that there is mounting evidence that people with dementia living in ECH can have a good quality of life. However, there is also evidence “that some tenants with dementia can be at risk of loneliness, social isolation and discrimination.” Extra care can offer an effective alternative to residential care, and can delay or prevent the need for a move to nursing care. However, while many people with dementia have been able to remain in extra care housing until the end of their lives, “enabling all tenants, with or without dementia, to remain in place through to the end of their lives in extra care housing is not usually possible”.
It is important to understand the variables that can influence the likelihood of people with dementia being able to remain at home in extra care or needing to move to other facilities. The review identified a number of issues:
● Challenging behaviours, and their impact on other tenants and staff.
● Difficulties in providing the necessary levels and flexibility of care in response to increasing needs.
● Availability of resources including demand on staff time.
● Level of community nursing services available.
● Targets for dependency mixes, and maximum number of high-dependency tenants that can be cared for.
● Availability of places in other facilities.
● Willingness of funders to pay for increasing levels of care.
● Choices and preferences of tenants and their families.
It is already evident that dementia among tenants in extra care housing is not unusual. While people moving into extra care housing generally have fewer physical and mental impairments than people moving into care homes, nonetheless some tenants have multiple health conditions including dementia.
Studies undertaken by Housing 21 and by Hanover suggest that as many as one-quarter of tenants of extra care had been diagnosed with or were believed to have dementia. Some studies have found considerably higher levels of moderate or severe cognitive impairment among tenants.
Evidence from UK studies supports a conclusion that extra care is able to meet the needs of many people with dementia and provide them with a good quality of life by enabling them to live in a community setting and retain their independence as long as possible. However, the ability to promote “independence” diminishes as the level of dementia and other health and care needs increases.
A study which tracked tenants with dementia in 15 Housing 21 extra care schemes over a period of three years was particularly useful in supporting a conclusion that: “..most of the extra care schemes in the study were operating as a replacement for residential care, and in most cases the extra care is effective as an alternative to residential care for people with dementia.” The ability of schemes to provide appropriate care for all tenants is reliant not only on the capacity and nature of the scheme itself, “but on other local services such as community nursing, to be able to provide required services.”
In addition to support with health needs, other factors that make a difference to quality of life and which can delay functional decline in people with dementia in extra care settings include activities and participation. Studies in both the UK and the US variously report that participation in activities is associated with longer retention of people within extra care or assisted living facilities. For people with dementia, such participation might best be involvement in normal household activities.
The Enriched Opportunities Programme developed by the Bradford Dementia Group and the Extracare Charitable Trust aimed to find a way of working to ensure people with mental health problems, including dementia, could lead fulfilled lives within extra care and without the need for a further move. Initial evaluation of the model was very positive “..and demonstrated that it is possible to increase levels of well-being and diversity of activity for people living with dementia in extra care housing.”
Moreover, a casework model of setting individual goals with tenants was seen to work well. The review concludes that a long-term, multi-site, controlled evaluation of the Enriched Opportunities Programme is needed to determine the effectiveness in supporting people with dementia, increasing quality of life, and reducing the likelihood of moving to a nursing or care home.
It is an important conclusion that extra care housing can provide a home for life for large numbers of people with dementia, but not all needs can be met by all schemes. Many examples were found where staff could not manage the symptoms or consequences of dementia of tenants, or other tenants could not tolerate the impact on their own lives.
The review found evidence on cost-effectiveness to be sparse and contradictory, and identified this as another area where further evaluation is required.
Extra care can offer some people with dementia an option that facilitates more independence than would be possible in a care home. Longitudinal evidence indicates that tenants with dementia are able to live independently for almost as long as tenants without dementia.
The robustness of the evidence base would be considerably improved by addressing the specific gaps identified by the review including:
● Integrated versus specialist dementia models.
● Provision of end-of-life care.
● Outcomes for different types of individuals with dementia against key variables of extra care housing.
● Staff recruitment and training to work with people with dementia.
● Comparisons of extra care housing with alternative support.
Understanding what works, and what does not, for people with dementia living in extra care housing is vital as a basis for policy and practice development.
LINKS AND RESOURCES
Individualised activities and experiences are associated with improved quality of life for people with dementia living in extra care housing. Individualised assessment and care planning are key tools to support such an approach.
Improved quality of life appears possible for people with dementia living in extra care housing, although further development of approaches to measuring outcomes is needed. Important aspects of quality of life include maximising dignity and independence, meaningful social interaction and relationships, person-centred care and support, and freedom from pain and discomfort.
The success of extra care schemes in supporting people with dementia and avoiding them moving to other facilities is determined not just by the resources of the scheme, but critically by the support provided by home care and community nursing resources. A partnership approach is therefore vital.
Home for life
A home for life is a central principle of extra care housing, and while this cannot be guaranteed for any tenant (with or without dementia), there is evidence that more people can be supported to age in place. This has implications for the facilities available, the skills and knowledge of staff, and the dependency mix across schemes to allow optimal support for high dependency tenants without major negative impact on other tenants.
Self-knowledge and expertise
Staff in schemes need to be knowledgeable about dementia and have the appropriate skills to respond to effects and behaviours. Staff also need to be skilled in person-centred care and to understand the importance of personalisation and independence for all tenants.
Published in 1 October edition of Community Care 2009