Australia along with many other countries including the UK is focused on becoming dementia friendly. The Associations and Organisations advocating for people with dementia and their family carers are sitting around tables, inviting guest speakers to present at events and teach others how to make their organisations and communities dementia friendly.
The UK have been working on being dementia friendly via projects such as the Dementia Engagement and Empowerment Project (DEEP) for over 10 years, and yet the UK only have 350 people with dementia actively involved in their own advocacy. After all this time, and the size of their ‘community’ that seems an appallingly low number.
In the work being done towards dementia friendly communities, there are two pieces of the puzzle obviously missing; It is the internal Audit that needs to be done, inside their own organisations, and the full inclusion of people with dementia. I do not know of any truly dementia friendly Alzheimer’s/Dementia organisations. They generally are not inclusive of people with dementia, rarely have them on their Boards, and the consumer committees that have been set up to provide a consumer voice, are predominantly made up of carers, not people with dementia.
Thankfully this is changing, as the Scottish, European and Australian Dementia Working Groups made up entirely of people with dementia have set the trend, and I believe the Irish Dementia Group is currently being set up, modelled on what Scotland did twelve years ago. The Scottish group was ground breaking, and set the example of what could, and should be done. But not having people with dementia, at the table, at every single meeting about them, about what their needs are, being part of the conversations, is not dementia friendly.
There is no way any country or community would be holding meetings or running events, on what a gay or disabled friendly community is, without gay or disabled people being present.
Of course people with dementia rely on the support and services these organisations can provide, but not to their own detriment. Often we are used in a patronising and tokenistic way, in order for them to say they have included us. We are used to help with fund-raising, reported as ‘sufferers’ and ‘victims’ in order to elicit sympathy and support through fundraising for research. Research still mostly goes into finding a cure, even though the top researchers openly and publicly admit we [they] are further away from a cure than they were 10 years ago!
Change is in the air, and as the voices of people with dementia get louder, and more unified, through organisations such as Dementia Alliance International we will spread our wings and use our voices to ensure our basic human rights.