New research into independence for people with dementia

Issue date: 26 April 2006

Housing 21 New research published today shows that extra care housing is a resoundingly popular accommodation choice for older people who develop memory problems or dementia and need to move out of their homes.

The research was carried out by older people's housing association Housing 21 in collaboration with the Housing Corporation, the University of the West of England, Bristol (UWE), and Dementia Voice.

'Opening doors to independence', a three year study into older people with dementia who live in extra care housing, also warns that the Government's agenda for increased choice and independence of older people is at risk without better resources and increased co-operation between housing, health and social care providers.

The study found:

• Extra care housing has a key role in maintaining independence and health of people with dementia.
• With the right support, people with dementia and memory problems are able to live independently in extra care housing for nearly as long (around 2 years) as people without significant cognitive impairment.
• Older people with dementia – and their families – choose extra care housing because it meets their needs and aspirations better than other accommodation options.
• Friends and relatives are more likely to remain part of an informal support network of residents living in extra care housing, compared to people living in hospital, or nursing or residential homes.

Housing 21 research manager Sarah Vallelly, lead author of the research report, said:

“This is the first long-term research published which looks specifically into the role of extra care housing for people with dementia. It gives a springboard for radically rethinking what is currently offered to older people with dementia who are unable to remain in their own homes.”

The research also shows that there is an urgent need to replicate good extra care schemes around the country, but this is hampered by a lack of resources, poor co-ordination by service providers and difficulties in recruiting and retaining appropriately qualified care staff.

Matt Leach, Director of Policy and Communications at the Housing Corporation, said:

"The Housing Corporation is committed to helping meet the needs of vulnerable older people. We want to help them meet their aspirations of independence, and to maintain strong links with family, friends and the wider community. Meeting the needs of the most vulnerable older people is of critical importance, which is why over the last two years we have invested over £93 million in new extra care housing schemes, and why we are so pleased to have been able to support this research."

The report makes more than 15 recommendations, including:

• Better investment so the 'flexibility of care' provision can be sustained – as people's care needs change, so services change with them.
• Using extra care housing as a base to develop better preventative health services for all older people in the community.
• Improved joint working at all levels between health, housing and social care providers.
• Further investigating the use of assistive technology, and design principles, to improve the quality of life for people with dementia.
• Releasing additional social care 'escorting' funds to support people with dementia and allow them to benefit from all the facilities within extra care schemes.
• Prioritising funding for activities co-ordinators to increase opportunities for social engagement and stimulation.
• Improved specialist dementia training for social care and other staff.

Simon Evans, senior research fellow at UWE and co-author of the report added:

“This is the first national study of extra care housing for people with dementia. Its findings have implications for government policy in providing appropriate housing options for increasing numbers of older people. A major strength of this study is that it involved older people with dementia and their families and shows we can gain meaningful insight into their views. The findings are firmly based on the views and experiences of people with dementia.”

Copies of 'Opening doors to independence' are available, price £25, from Housing 21. A summary of the report is available free and can be downloaded from


Editors notes:

1. The research tracked 103 people with dementia in extra care housing in a combined quantitative and qualitative study which finished in October 2005. Information was updated every six months, recording how people's health, well being and care needs changed over time and reasons for tenancies coming to an end. In total, the quantitative study involved 340 completed surveys.

The University of the West of England, Bristol conducted interviews in six extra care schemes across England. 36 people with dementia were interviewed on up to four separate occasions over the life of the study. Care and housing staff were interviewed at various intervals, as were relatives of people with dementia, other residents and senior managers from local health and social care partner organisations. A total of 127 interviews were conducted.

2. Partners involved in the research:

Housing 21 is a national provider of housing, care and support for older people in England. Housing 21 has over 13,000 units of accommodation in more than 200 local authority areas including 16 extra care schemes. Housing 21 also delivers a range of care services and has several extra care schemes in various stages of development.

The Housing Corporation is the Government agency responsible for investing in new affordable homes and regulating over 1,500 housing associations across England. Its biggest ever investment programme of £3.9 billion for 2006-08 will fund 84,000 homes; 49,000 of these will be for affordable rent, and 35,000 will be for affordable sale through the Government's new HomeBuy initiative, helping people to get a foot on the property ladder.

The University of the West of England (UWE), Bristol, is one of the leading new universities for research. The Faculty of Health and Social Care has developed strong research links with health and social care communities, and has particular expertise in including people from vulnerable or marginalised groups in research.

Dementia Voice is the specialist care arm of Housing 21 and a Dementia Services Development Centre. It has a national role in direct provision of older people's mental health services and in providing research, training and consultancy to promote best practice to care professionals and commissioners.

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