What do the words "dementia friendly community" mean to people with dementia? March 2012 Steve Milton Director Innovations in Dementia (CIC)

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

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.

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, cafes, cinemas and post offices) …..and maintain their social networks so they feel they belong in the community.

Findings from DH Dementia and Big Society ThinkTank March 2011

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)

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.

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.

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”

…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

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.