For six months now, I have been visiting and working in the Kiama area as part of the contracted consultancy role I have until this week with Alzheimer’s Australia, on the dementia friendly community Pilot Project with the local Kiama council, Alzheimer’s Australia and the University of Wollongong.
The main challenge has been to involve and engage people with dementia; as with most cities and towns, many of the people with dementia have not even “come out” yet about their diagnosis, due to the feelings of shame, the stigma and discrimination, and the isolation experienced following the diagnosis.
This is partly due to the Prescribed Disengagement dished out at the time of diagnosis – being told go home, get their end of life affairs in order, and get acquainted with aged care, which is a recipe for hopelessness, helplessness and a pathway only to aged care and death.
No indication there is and can be a good life to live, alongside dementia, for many people. It is encouraging to see a few people with dementia and their support people (partners, husbands, wives, friends) take this project on, and become active members of the first Local Dementia Advisory Committee in Australia, called in this region, the Kiama Dementia Advisory Committee. It is modelled on the national Alzheimer’s Australia Dementia Advisory Committee.
This is what we need every dementia friendly community initiative to do, as without allowing people with dementia, also living with varying and significant disabilities, to function in smaller groups, with support, rather than expecting them to be part of a larger group full of people without disabilities, is unreasonable, and of course, is partly why it is hard to get them to engage.
Kiama is setting the example, and I am thrilled I will be staying on with this project in a voluntary capacity, and I am very hopeful this will become part of the suite of dementia friendly toolkit resources. Well done to the members of this Dementia Advisory Committee in Kiama, and together, we will lead the way.
It basically involves a few simple steps. The first two are to set up a Local Dementia Advisory Committee and a Local Dementia Alliance or Working Group. Then we need to encourage organisations, businesses and the community to engage, by;
- Making the Commitment (having Board and/or management of your organisation sign the Dementia-friendly commitment – template attached)
- Making it real – completing an action plan (with the assistance of Alzheimer’s Australia) to define the strategies and how the organisation will work towards becoming dementia friendly. This plan will go to the Local Dementia Advisory Group to review and approve.
- Making it last – annual continuous review process to look at what has been achieved and identify other priorities and strategies for the next 12 months.
Of course, the resources on the Alzheimer’s Australia website includes a lot more steps, processes and details, and some other terrific examples, but it is really a simple inexpensive process. The most important step, is to include people with dementia every step of the way, in the same way we would if we were setting up Indigenous or disAbled friendly communties.