What do "dementia friendly community" mean to people with dementia?

1. What do "dementia friendly community" mean to people with dementia? Dr. Jimmy Yee-ming Wu Chairman, HKADA

2. I’m sorry to tell you that you have the very early symptoms of Alzheimer’s Disease? What now?

3. A dementia friendly community can be defined as being one in which it is possible for the greatest number of people to live a good life with dementia; ….. where people with dementia are enabled to live as independently as possible and to continue to be part of their community, …….but at the same time are met with understanding and given support where necessary.

4. A dementia-friendly community is described by people with dementia as one that enables them to: • find their way around and be safe, • access the local facilities that they are used to (such as banks, shops, restaurant, post offices, recreational facilities and social centres) • …..and maintain their social networks so they feel they belong in the community.

5. Findings from UK DH Dementia and Big Society ThinkTank March 2011

6. People told us about the things which make the difference in a dementia-capable community: • The physical environment • Local facilities – especially the people • Support services • Social networks • Local groups • “This is town with a 'heart' - where the High St is the hub and where there is a community centre, health centre and day centre with regular events and services which are well-publicised” (supporter from a small town)

7. People told us they had stopped doing things in their community because: • Their dementia had progressed and they were worried about their ability to cope • They were concerned that people didn’t understand or know about dementia • Almost without exception – people blamed dementia, rather than shortcomings in the environment or community. • Very low expectations.

8. People told us that they would like to be able to: • Pursue hobbies and interests • Simply “go out” more • Make more use of local facilities • Help others in their community by volunteering • People told us that 1-1 informal support was the key to helping them do these things.

9. People told us that communities could become more dementia-capable by: • Increasing their awareness of dementia • How? • Communities need knowledgeable input, not least from people with dementia • There needs to be continued media attention and public awareness campaigns • Dementia needs to be “normalised”

10. …and by making mainstream services and facilities can be more accessible for people with dementia. • People have told us that to do this: • Communities need knowledgeable input, not least from people with dementia • Communities should make better use of existing resources • Organisations should work together more effectively

11. Where might you start building a dementia-friendly community? The voices of people with dementia and their carers should be at the start and the heart of the process of creating dementia-friendly communities. Dementia-friendly communities need to be responsive to what people want, but perhaps more importantly, people with dementia should have the right to have a sense of ownership, investment, responsibility and of connectedness to their own communities.

12. A sense of home, a need for care. The balance to be achieved. • What people want from a home and want they want in their lives does not change because of age, nor are core needs lost in dementia • But what does change in care is that residents can be disabled to the point where they can no longer carry out actions to fulfil their own aspirations and meet their needs. • A need for security, belonging, affection, companionship, occupation, meaningfulness, choice and control. • Building design contributes to well-being it cannot determine it

13. Guiding design principles (i) • A room as your home There’s a world where I can go and tell my secrets to In my room, in my room In this world I lock out all my worries and my fears In my room, in my room Do my dreaming and my scheming Lie awake and pray Do my crying and my sighing Laugh at yesterday. (Lyrics from ‘In My Room’, Wilson & Usher, 1963)

14. Guiding design principles (ii) • Moments spent between rooms are as important as those spent within rooms. • Communal and external areas that are legible and meaningful for residents. • Prosthetic designs that compensate for abilities that are impaired or lost.

15. Carpets • Works carried out • The same colouring with minimal pattern throughout the corridors minimizes misperception and creates a flow. • Visual barriers created through differing shades Bupa ADI 15 Bupa ADI 5 March 2012

16. Corridors • Plain corridors throughout, with no differentiation • Works carried out • Each corridor length is decorated in a different colour to aid orientation and provide an aesthetically pleasing environment • Refreshed artwork with nostalgic themes • Memory boxes throughout Bupa ADI 2 March 2012 16

17. A room as your home

18. Handrails • Bold handrails on corridors only • Works carried out • Contrasting handrails were already in place, however ‘staff-access’ doors now have handrails across them to disguise the fact they are doors. Bupa ADI 2 March 2012 18

19. An institutional lounge becomes a sitting room • Works carried out • Partition introduced to create a smaller warmer space • Wallpaper to create a ‘homely’, meaningful and inviting setting to sit. • Visual access maintained – allowing carers to observe effectively. • Large open space, the same throughout Bupa ADI 5 March 2012 19

20. Meaningful destination points • Works carried out • Two linen cupboards are now culture- and age-appropriate destination points. A newsagents and textile ‘mill’. activity zone has been created. Promote interest and engagement, as well as a reason to walk around. • Originally a corridor linen cupboard for storage (doors taken off in this photo) Dementia Friendly Environment – Colton Lodges trial, Before and After photos 20

21. The cafe • 2nd ‘ill-focused’ lounge not used very often • Works carried out • ‘Last of the Summer Wine’ (BBC comedy drama) café created, with nostalgic items from the programme, along with artwork of Compo, Foggy, Clegg and Nora Batty – encouraging staff to use this area for tea and scones (for example) Dementia Friendly Environment – Colton Lodges trial, Before and After photos 21

22. SIMPLE TECHNOLOGY THAT CAN HELP AROUND THE HOME- Kitchen and Bathroom • Large handled cutlery, 2-handled mugs • Non-slip mats/ One-touch automatic can/ • jar opener • Smoke alarms fitted with flashing lights • Bath temperature and water level indicator • Talking tins Images taken from essentialaids.com and rnib.org.uk

23. SIMPLE TECHNOLOGY THAT CAN HELP AROUND THE HOME- Electronic devices • Startaboard high contrast keyboard • Big button talking telephone • TV based video magnifiers • Recordable greeting cards • Talking calculator • Universal remote control Images taken from essentialaids.com and rnib.org.uk

24. SIMPLE TECHNOLOGY THAT CAN HELP AROUND THE HOME- General • Game sets • Signature/envelope guide • Large faced clock/talking clocks • Book stand with light • Glowmat Images taken from essentialaids.com and rnib.org.uk

25. SIMPLE TECHNOLOGY FOR LEAVING THE HOME • Key turner and Key locators • Recording devices (e.g. for shopping lists) • Medi alert and Help card • Note detector and coin holders • Big button mobile phones Images taken from essentialaids.com and rnib.org.uk

26. TECHNOLOGY IF ‘WE’ CAN DO IT FOR HIM ‘WE’ CAN DO IT FOR US (PEOPLE WITH DEMENTIA AND THEIR CARERS)