1. Extracare Housing Seminar The Watershed, Bristol 5 June 2008

2. ripfa Extracare Housing Seminar June 08 Messages from Research on Extra Care Housing and People with Dementia Rachael Dutton Research Manger Dementia Voice - HOUSING 21

3. ripfa Extracare Housing Seminar June 08 Contents 1)About Us 2)Extra Care Housing in Brief 3)Extra Care Housing and People with Dementia – the evidence base 4)Research Findings from Opening Doors to Independence (Vallelly et al, 2006) 5) Conclusions 6) Useful Tools

4. ripfa Extracare Housing Seminar June 08 (1) A major national provider of services for older people Mission is to improve people's lives by promoting independence and choice for older people through good quality care, support and housing. 14,000 homes nation-wide in sheltered and extra care courts.

5. ripfa Extracare Housing Seminar June 08 (1) 15 years as Dementia Services Development Centre Now integrated into Housing 21 as the Specialist Dementia Services development arm Responsible for management and development of specialist care provision, research and training Committed to advancing the evidence base relating to design, technology and service delivery.

6. ripfa Extracare Housing Seminar June 08 (2) Extra Care Housing - Overview Also known as: Housing with Care Assisted Living Housing Very Sheltered Housing

7. ripfa Extracare Housing Seminar June 08 (2) Extra Care Housing - Overview Housing designed with the needs of frailer older people in mind. Varying levels of care and support available on site, enabling people to ‘age in place’. People have own self contained homes - own front doors - a legal right to occupy the property. Can be owned, rented, leasehold, part owned and part rented. Comes in many built forms (e.g. blocks of flats, bungalow estates and retirement villages) and designs (e.g. ‘core and cluster’).

8. ripfa Extracare Housing Seminar June 08 (2) Extra Care Housing - Overview Supports independent living for as long as possible. Gives security and privacy of a home plus a range of facilities on the premises and flexible care and support services. At its heart extra care housing is about ‘quality of life’ not just ‘quality of care’. [Housing LIN (2003; 2004) Extra Care Factsheet Number 1. Extra Care Housing What is it?]

9. ripfa Extracare Housing Seminar June 08 (2) Extra Care Housing - Types Types of tenants: Differing / Balance of dependency levels (‘dependency mix’) Mixture of tenants with and without dementia Dementia-type illness tenants only.

10. ripfa Extracare Housing Seminar June 08 (3) Extra Care Housing and People with Dementia What Can Extra Care Offer to Older People with Dementia? What is the evidence? Is extra care a suitable option for people with dementia? What benefits does it have for them and their families? What are the key ingredients for success?

11. ripfa Extracare Housing Seminar June 08 The Evidence Base … NICE/SCIE (2006) – regarding planning and organisation of services for people with dementia and their carers is: “small, even non-existent for some services, and is generally of a poor quality, or not readily applicable to the UK”. [Dementia: Supporting People with Dementia and their Carers in Health and Social Care, National Clinical Practice Guideline Number 42, 2006. http://guidance.nice.org.uk/cg42 ]http://guidance.nice.org.uk/cg42 O’Malley and Croucher (2005) - guidance to the design of living environments for people with dementia is based on ‘good practice’ rather than empirical evidence. O’Malley L and Croucher K (2005) Housing and Dementia Care: A scoping review of the literature. Health and Social Care in the Community 13, 570-577.] (3) Extra Care Housing and People with Dementia

12. ripfa Extracare Housing Seminar June 08 Recent Literature Review on Housing and Care (Croucher et al., 2006) Evidence seems to suggest that housing with care can accommodate people with relatively mild to moderate cognitive impairment. Can be concerns and difficulties around balancing the needs of residents with dementia against those without dementia. Currently no evidence to indicate that the schemes evaluated could successfully accommodate people with dementia over the full course of their illness. No evaluations found of Extra Care schemes specifically designed for people with dementia. (3) Extra Care Housing and People with Dementia [Croucher K, Hicks L and Jackson K. (2006) Housing with care for later life: a literature review.]

13. ripfa Extracare Housing Seminar June 08 (4) Recent Research Findings - Opening Doors to Independence Three year tracking study to explore what happens to people with dementia in extra care housing. Carried out by Housing 21 in partnership with Dementia Voice and the University of the West of England. Supported by an Innovation and Good Practice grant (IGP) from the Housing Corporation. Opening Doors to Independence

14. ripfa Extracare Housing Seminar June 08 (4) Recent Research Findings - Opening Doors to Independence Research Aims: To evaluate the contribution that extra care housing can make to the long term care and support of people with dementia. To make recommendations for good practice and assess the limitations of extra care housing. To capture the views of older people with dementia.

15. ripfa Extracare Housing Seminar June 08 Research Study Involved Tracking 103 tenants Jul 2003 – Oct 2005 from all of Housing 21’s extra care housing courts Collecting data on health, well-being and care, and reasons for tenancies coming to an end Interviews with 36 tenants with dementia Also interviews with: Care and housing staff Relatives of people with dementia Other residents Senior managers from local health and social care partner organisations. (4) Recent Research Findings - Opening Doors to Independence

16. ripfa Extracare Housing Seminar June 08 Key Findings Extra care offered a good quality of life to the majority of residents with dementia Dementia alone did not have a negative impact on potential to live independently in extra care housing The flexibility of care and support is a key strength Many older people in extra care have complex health needs, most of which are being met within their housing setting Extra care enables older people with dementia to remain living in a community setting. (4) Recent Research Findings - Opening Doors to Independence

17. ripfa Extracare Housing Seminar June 08 Does It Provide a Home for Life for People with Dementia? Of the cases that ended during the course of the study, a ‘home for life’ was possible for about 50% of tenants with dementia: 21 died, and 22 moved to residential or nursing care Triggers for move on identified by staff: repeated use of emergency alarm, distress, conflict and “challenging behaviours” There was little evidence of “wandering” as a risk factor Residents move in average age 84 years old and high dependency needs (10 hours+) Significant other health problems – care hours generally increased over time. (4) Recent Research Findings - Opening Doors to Independence

18. ripfa Extracare Housing Seminar June 08 The complexity of long term care funding mitigates against our ability to support people to die at home An integrated strategy that involves health care has a positive impact on residents in extra care but it is not the norm. (4) Recent Research Findings - Opening Doors to Independence

19. ripfa Extracare Housing Seminar June 08 Key Challenges Identified Management of risk (different professional and personal definitions of risk) Assistive technology where in use can be very effective in enabling frail older people to maintain their independence – but there are a number of barriers to this happening Providing flexible care and support under increasing resource pressure Recruitment and retention of care staff (4) Recent Research Findings - Opening Doors to Independence

20. ripfa Extracare Housing Seminar June 08 Balancing independence and isolation 60% of residents in the study had regular visits and ongoing support from friends and family Family members said that the relationship was easier – less carer fatigue and less stress but … Can be hard to make new friendships People can feel isolated in their own flats. (4) Recent Research Findings - Opening Doors to Independence

21. ripfa Extracare Housing Seminar June 08 What Residents with Dementia Particularly Liked - independence and privacy of own flat - alarm system - peace of mind and security - eating in restaurant - positive relationships with carers, particularly where continuity could be achieved - “still part of the community” - involvement of relatives and friends. (4) Recent Research Findings - Opening Doors to Independence

22. ripfa Extracare Housing Seminar June 08 Three elements of the extra care environment emerged as particularly important in supporting independence : 1.the freedom to come and go within and beyond the housing scheme; 2.maximising opportunities to ‘do things’ for themselves; 3.having choices about how to spend their time. (4) Recent Research Findings - Opening Doors to Independence

23. ripfa Extracare Housing Seminar June 08 The Importance of a Stimulating Environment Eating and social aspect of eating together found to be very important (for health and well being) Provision of stimulating activities – community development workers, activities co-ordinators Day centres attached to courts were highly valued. (4) Recent Research Findings - Opening Doors to Independence

24. ripfa Extracare Housing Seminar June 08 Findings Regarding Integration or Specialisation Advantages of a ‘specialisation’ found to be: Specialist care and support could be targeted on people with higher levels of need Catered more effectively for ‘wandering’ Extra security Fewer people moved on to other settings Disadvantages: Less integration in social life Hard for couples Did benefit some older people with dementia but requires good knowledge of the individual prior to moving in to make the assessment. (4) Recent Research Findings - Opening Doors to Independence

25. ripfa Extracare Housing Seminar June 08 Findings Regarding Impact of Good Design Good outside design such as wander gardens reduce risks and concerns Some small alterations or adaptations have a major impact An environment which is easy to move around with good orientation aids is essential But … Residents with dementia still need “escorted hours” as part of the care and support package More rigorous investigation of effectiveness of design features is needed. (4) Recent Research Findings - Opening Doors to Independence

26. ripfa Extracare Housing Seminar June 08 Summary of Key Elements Contributing to Effective Extra Care: Flexibility of care and support A stimulating environment, appropriate activities, and accessible facilities Specialist training and support for staff Integrated strategies and joint working between housing, health and social care Access to health care Good use of assistive technology Involvement of individuals with dementia and their carers in provision of care and development of individual schemes. (4) Recent Research Findings - Opening Doors to Independence

27. ripfa Extracare Housing Seminar June 08 “Extra care with the right ingredients can offer older people with dementia both security and independence, and above all a good quality of life” [Vallelly, S, Evans S, Fear T, and Means R. (2006) Opening Doors to Independence, A longitudinal study exploring the contribution of extra care housing to the care and support of older people with dementia. http://www.housing21.co.uk/downloads/h21openingdoors_summary.pdf] Evidence suggests that Extra Care can be a good option at least for people with low to moderate levels of dementia. It is a popular choice for people having to move out of their homes due to memory problems – meets aspirations better than other accommodation options. Has a key role in maintaining independence and health. [Extra Care Housing Toolkit (LIN) http://www.icn.csip.org.uk/_library/Resources/ Housing/Support_materials/Toolkit/ECH_Toolkit_Website_Version_Final.pdf] (5) Conclusions

28. ripfa Extracare Housing Seminar June 08 (5) Conclusions Need for More Robust Evidence Continues to be debates around what model of provision is best for individuals and carers with dementia, and for other Extra Care tenants. A more robust evidence base is required. More research is needed, particularly rigorous investigation around: the issue of integration and segregation in different settings what is most effective in terms of dementia specific design.

29. ripfa Extracare Housing Seminar June 08 (6) New Research Consortium Following a consultation event in January Enhancing the ‘What Works’ Research and Knowledge Base [http://www.housing21.co.uk/about_us/story_detail_whatworks.php] Organised by Housing 21 – Dementia Voice Funded by JRF Set up a Housing and Dementia Research Consortium with Anchor, MHA, and Hanover. Aims: to galvanise research activity to address key gaps in the evidence base with the aim to achieve timely, appropriate high quality research focused on ‘what works’ in order to directly influence policy and practice in relation to housing and care of people with dementia in the UK.

30. ripfa Extracare Housing Seminar June 08 Useful Tools and Information * Extra Care Housing Toolkit (LIN) http://icn.csip.org.uk/_library/Resources/Housing/Support_materials/Toolki t/ECH_Toolkit_Website_Version_Final.pdf Housing LIN factsheets on Extra Care e.g. * Supporting People with Dementia in Extra Care Housing: an introduction to the issues (January 2005) http://icn.csip.org.uk/housing/index.cfm?pid=332 * Standards for the Evaluation of an Extra Care Housing Scheme - drawn from a literature review looking at the range of standards and best practice documents that exist in the sector. www.cat.csip.org.uk/.../docs/Housing/Toolkit/Standards_forthe_evaluation _ofan_extra_care_housing_scheme.doc

31. ripfa Extracare Housing Seminar June 08 Rachael Dutton Research Manger Housing 21 - Dementia Voice Hillside Court Batten Road Bristol BS5 8NL  0870 192 4669  rachael.dutton@housing21.co.uk