Extra Care Housing for People with Dementia 15 th November 2005 Fred Tibble Court – The Experience So Far

1. Extra Care Housing for People with Dementia 15th November 2005Fred Tibble Court – The Experience So Far Jon Head – Senior Service Development Manager – Hanover HA SE Region jon.head@hanover.org.uk www.hanover.org.uk

2. Fred Tibble Court – The Experience So Far • Background – Barking and Dagenham • Why extra care for people with dementia? • Description of Fred Tibble Court (FTC) • TLC Care Services • Managing our risks • Entry criteria • Telecare • Evaluation by Institute of Public Care – background, aims and some key findings • National Policy context • Conclusion

3. Fred Tibble Court – The Experience So Far Background – Barking and Dagenham • LBBD (2001-2) reviewed alternatives to residential care and planned an ongoing strategy for service modernisation and reprovision. • Limited modern provision for people with dementia in the Borough • Many people needing care away from home had to go to neighbouring LAs • Decision to promote a specialist extra care scheme for people with dementia – with following aim (LBBD) • “to provide secure and appropriate accommodation and separately commissioned care to meet the needs of the Service Users who will, in the main, be older people living with dementia. …..to create independence and choice for Service Users enabling them to maintain their presence within the community.”

4. Fred Tibble Court – The Experience So FarBackground – Barking and Dagenham (cont.) • Not an isolated development: • LBBD already had an Anchor-run extra care scheme – Colin Pond Court • Hanover had opened a non specialist extra care housing scheme - Harp House – in 2002. • Fred Tibble Court opened in 2004 • Hanover and LBBD are now developing our 3rd (mainstream) scheme – Darcy Gardens - and are planning a 4th.

5. Fred Tibble Court – The Experience So FarWhy extra care housing for people with dementia? • Why Not? • Extra care largely evolved as a response to physical frailty but.. • If extra care is to be a true alternative to residential care then it should also respond to the needs of people with dementia and their carers • Extra care offers major advantages for carers who wish to remain actively involved in supporting a person with dementia • Of course, Extra care already meets the needs of many people with dementia • Research undertaken in 2002 - 10% of Hanover Extra Care tenants had a diagnosis of dementia and a further 16% were believed to have dementia, based on behaviours and other signs

6. Fred Tibble Court – The Experience So FarDescription ‘Typology’ of extra care schemes catering for people with dementia? • A unit or ‘wing’ - within a non specialist scheme • Integrated, mainstream extra care schemes • Specialist schemes • Exclusive schemes Where does Fred Tibble fit?

7. Fred Tibble Court – The Experience So FarDesign/build issues Outside scope of presentation … but to set scene: • 31 flat (26 x 1 bed; 5 x 2 bed) scheme in Dagenham - opened in June 2004 • Flats to normal extra care scheme /design standards • Built upon the site of a closed residential care home • Normal extra care communal facilities include a residents’ lounge/dining room, laundry room, assisted bathroom, shop/kiosk, guest room, hairdressing salon • A small professionally designed cinema • A secure garden area • Telecare • Particular focus on interior design

8. Fred Tibble Court – The Experience So FarTLC Care Services -www.tlccare.org.uk • TLC Care Services – ‘not for profit’ care provider founded in 1991 - based in NE London • TLC provides both care and support for residents to ensure as seamless a service as possible. Separate contracts with • SSD for care provision • Hanover for housing related support provision • Also a dementia inclusion worker • Committed to working in a holistic, person centred way

9. Fred Tibble Court – The Experience So FarTLC (cont.) • Specialising in work with • people with dementia; • people of all ages who are living with disabilities, illness or frailty • carers. • people with learning disabilities and people with mental health problems • training and consultancy services; • support groups for stroke survivors; • domiciliary and respite care. • Also, care contract at Harp House scheme • Work alongside Hanover’s Estate Manager (EM) and Assistant EM, who cover both Hanover’s schemes in LBBD

10. Fred Tibble Court – The Experience So FarManaging our risks • Translating perception of ‘need’ into sufficient applicants • Would assessment / ‘case finding’ process be finely tuned enough? • Would the scheme be attractive enough to be viable? • …bearing in mind that people would need to fall within a ‘window of opportunity’ defined by ‘level’ of dementia • If - in response to the above risk - we loosened entry criteria, would it then lose specialist focus and identity? • Would the scheme be sustainable in longer term, i.e. when residents’ needs increase? • Concerns about registration issues during the planning stage

11. Fred Tibble Court – The Experience So FarManaging our risks How we managed risks: • Eligibility criteria –broad approach • Scheme design / facilities that are sufficiently generic to make the scheme attractive - (exit route/flexibility) • [ However this hasn’t been tested ] • Emphasis on the housing model • Assured Tenancies – guidance on how tenancies could be set up where people lacked capacity to sign • Ensure that the tenant is able to enter a valid tenancy agreement at the point of entry • Choices over care • Evaluation!!

12. Fred Tibble Court – The Experience So FarEntry Criteria [detail] Applicants • will be mainly older people living with cognitive dysfunction arising from diagnosed medical conditions/disabilities, with possible short term memory loss, some disorientation, and/or communication difficulties, but to a degree which is assessed as being manageable at the point of entry, allowing them to become settled in their new environment. • will be people at the early stages of dementia, though others with similar difficulties arising from other diagnosed medical conditions (e.g. Parkinson’s Disease and strokes) will also be eligible. • must be able to appreciate in general terms, their rights and responsibilities as a housing resident and as a recipient of care and support services. • will have some knowledge and awareness of their surroundings.

13. Fred Tibble Court – The Experience So FarEntry Criteria [ detail ] (Cont.) Applicants • will be able to partake of supportive relationships within the Scheme and function within a daily routine; • Will have a commitment to living as independently as possible, in self-contained accommodation - but should also need the security and peace of mind offered by the Scheme. • should be able to make choices (with appropriate degrees of support) about the care and support they receive. • should not have a level of physical or mental frailty that is likely to cause serious disruption or risk to other occupants.

14. Fred Tibble Court – The Experience So Far • People with dementia or other cognitive impairments that are already at a more advanced stage will not be eligible for entry to the scheme. • Wherever possible the applicants should enter the Scheme at an optimum time for them and not at a point of crisis.

15. Fred Tibble Court – The Experience So Far IPC summarised the criteria as: • having a diagnosis of dementia or other medical condition resulting in cognitive dysfunction • being at an early stage in the progression of the illness • being aware of their surroundings, and able to make choices • not being a risk to other residents and/or staff • ideally not being at a point of crisis Also ….. a balance of need and dependency levels, defined as: • High Care needs - 10 hours and over p.w. (40%) • Medium Care needs - 5 -10 hours per week (30%) • Low Care needs of less than 5 hours per week (30%)

16. Fred Tibble Court – The Experience So FarOther points in criteria • ExtraCare- a Housing option - fundamental principle of promoting independent living, and the value of people having their own front door and tenancy. • Preference to Local applicants • Both housing and care needs – LA Housing Nomination route • Exceptionally, if not possible to fill void units using the above criteria, units could be let to: • Frail older people who meet the eligibility criteria for non-specialist extra care housing • Older people who do meet the above criteria but who live outside the LBBD. (Hasn’t happened so far)

17. Fred Tibble Court – The Experience So FarTelecare ‘Starter pack’ plus infrastructure • Fall detector • Movement detectors • Bed sensors • Chair sensors • MIDAS / CALMS • EIB wiring (lighting path - bed to WC)

18. Fred Tibble Court – The Experience So FarTelecare (cont.) Issues • Technical teething problems / test bed • Interference with the call system was problematic • A lot of devices very useful • Not fully deployed yet Telecare - Joint Protocol Telecare deployed in ways that reflect; • needs identified in individual care and support plans; • residents’ preferences (or views of carers / representatives) …and which promote privacy and dignity

19. Fred Tibble Court – The Experience So Far Telecare - Joint Protocol (cont.) • Focus at FTC - person-centred, ‘social model’ of dementia care. • Face-to-face interaction and communication with service users at centre of service delivery. • Telecare is an aid to this core service, to be used where it can support and assist the aims set out in individuals care and support plans. • Telecare may not be needed in every instance.

20. Fred Tibble Court – The Experience So FarEvaluation by Institute of Public Care (IPC) • Why? • Asked to look at • Is the scheme attracting the “right” population? • Is the scheme performing to an acceptable standard? • Does the scheme deliver a reasonable quality of life for its residents? • A fourth element as a possible future stage: • Does the scheme meet the expectations of users?

21. Fred Tibble Court – The Experience So FarEvaluation by Institute of Public Care (IPC)(cont.) Findings • Is the scheme attracting the “right” population? • Panel decisions have largely adhered to criteria, and initial population does match those set out by partners • Generally, criteria have been followed- with some exceptions • Initial population • Few couples - missed target set – (Why?) • No residents from BME groups – (Why?)

22. Fred Tibble Court – The Experience So FarEvaluation by Institute of Public Care (IPC)(cont.) Is the scheme attracting the “right” population? • In FTC, compared with a larger population of service users in the community identified as having some degree of dementia, there is • Under representation of those living with families pre entry (Why?) • Overrepresentation of those living alone (Why?) • Under representation of men (Why?) • Also, more entrants were at crisis point than criteria allowed for - but often they still settled in • Although FTC did achieve the ‘right’ mix, a high level of unmet need in the community remains – incl. people with high needs: • Who might have been able to use extra care if places available • … and a significant minority of whom then moved to institutional care instead

23. Fred Tibble Court – The Experience So FarEvaluation by Institute of Public Care (IPC)(cont.) Is the scheme performing to an acceptable standard? Does the scheme deliver a reasonable quality of life for its residents? • standards and the quality of life indicators were developed from a literature review of standards and best practice documents – with focus on: • Assessment and Allocation • Moving In • Care and Support • The Building • Communication and Involvement • Staffing • Partnership Working • Residents, their relatives and staff were interviewed to assess FTC against the standards developed

24. Fred Tibble Court – The Experience So Far Evaluation by Institute of Public Care (IPC)(cont.) Conclusions: • Residents have a reasonable quality of life • Most residents feel safe, respected and supported by staff. • Families’ experience is generally positive. • HHA and TLC emphasise the need for person centred care. • The scheme is designed to give opportunities for social interaction. • FTC reaches an acceptable standard across a range of measures; building design, use of assistive technology, support to managers and staff, a rehabilitative focus;

25. Fred Tibble Court – The Experience So Far Evaluation by Institute of Public Care (IPC)(cont.) Issues to address • Almost 1/3 of resident expressed feelings of loneliness –felt that staff do not spend enough time talking to them. • Need to increase resident involvement in care planning • Maintaining high care standards • Impact of staff shortages • Develop appropriate ways of involving residents in the running of the scheme. • Maintain and develop involvement with the wider community

26. Fred Tibble Court – The Experience So Far Evaluation by Institute of Public Care (IPC)(cont.) Issues to address (cont.) • Assessment: • More focus on strengths, and need to better evidence the involvement of the older person and/or their carer. • Strengthen review process • Telecare – need more information to residents about what is available. • Success of partnership between managers relies on personalities involved - needs to build upon a more structured approach.

27. Fred Tibble Court – The Experience So FarBackground – national policy DoH Extra Care Definitions – quick recap – how does FTC fare? • Living at home – not in a home • Having one’s own front door • Provision of culturally sensitive services • Flexible care delivery based on individual need • Opportunity to preserve or rebuild independent living skills • Accessible buildings with smart technology that make independent living possible for people with physical or cognitive disabilities including dementia

28. Fred Tibble Court – The Experience So FarBackground – national policy Extra Care Definitions – quick recap (cont.) • …… a real community ….. mixed tenures and mixed abilities…… permeable to the wider community …… benefits from the variety of provision available to all citizens. • An ethos of independence /rehabilitation • Tenancy or equity stakes give security of tenure • Couples may stay together • Relatives and friends may continue to contribute to care. DoH view on dementia specific schemes

29. Fred Tibble Court – The Experience So FarConclusion- Critical Factors for Hanover • Define entry criteria to ensure it is a truly housing-based service (tenancies / capacity issues) • When planning, critical to address the pros and cons of various models and reach an informed view • Balance specialist focus and flexibility – design and services • Realistic level of care and support - specialist provider • Exit strategies • Review and evaluate • Good residential / nursing home care can offer a viable alternative for people who cannot (or can no longer) enjoy/ benefit from living within a housing model • But huge potential for extra care • Will we do it again?

30. Extra Care Housing for People with Dementia 15th November 2005Fred Tibble Court – The Experience So Far Jon Head – Senior Service Development Manager – Hanover HA SE Region jon.head@hanover.org.uk www.hanover.org.uk