Now that the Australian government have recognised dementia as a National Health Priority, we will all be watching and listening carefully to see how this decision translates into change, reform and improvements in research, diagnosis, treatment, service provision and care for people diagnosed with dementia and their carers (BUBS). As this historic decision has been made, I have been in discussions with Alzheimer’s Australia about how they can support me in setting up an Australian Dementia Working Group. See this paper written about the Scottish Dementia Working Group Perspective on ageing with dementia_SDWG as it has been going for 10 years now, and has become a powerful voice for people with dementia in Scotland. Europe is currently in the process of setting one up too, so these are very exciting times for people with dementia (PWD).
A couple of weeks ago I was exposed to stigma by a senior staff member of a peak dementia organisation in SA. When I asked why there was no-one with dementia on the Board of the organisation, I was told but you are a-typical of a PWD, and no reason to allow someone with dementia on the board! Maybe I am a-typical, but as more baby boomers are diagnosed with dementia, there will be more PWD speaking up for their rights, and questioning the services – and motivations – of the medical profession, service providers and peak bodies. When told in Canberra a few weeks ago there are not enough of you [people with Younger Onset Dementia] to waste the funding on, I realised then we have such a long way to go to have an equal playing field.
If you are reading this and have dementia, or know someone with dementia, and who would be interested in getting involved with an Australian Dementia Working Group, please get in touch with me via my contact page. Any age group is welcome, as it will not be discriminating based on age! Do read the Scottish experience in the link above as it is uplifting not only allow us to see it is possible, it shows us the way. It astounds me no country has followed them before now, and I will work until I drop in getting it going in Australia. The slogan nothing about me without me, is powerful and I have asked them if we can also use this. I discovered Dementia Advocacy and Support Network International (DASNI) also use it, so I’m not sure who was first, but it is the perfect one liner.
Hi Kate
A very interesting read in the pdf above – thanks. For example…….in Scotland
“Classified as a major mental illness, dementia comes
under the umbrella of mental health services and
members are often quite shocked to learn they
have a mental health condition.”
I thought mental condition was something like insanity.
I didn’t like this unrealistic thinking though….
“Personally, I would not go back
to not having dementia … I’m
quite proud of everybody here.”
Baloney. I’m sure most peole with dementia wouldn’t ever want to have it. I’ve had cancer and survived, and while many people who say that they wouldn’t change their experience of having cancer, it’s nothing like a diagnosis of something like dementia. Nothing.
I’ll contact you via email about any possible involvement I might have with a working group.
Chat soon.
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The reality of the diagnosois, and the way we accept it is so different for each and every one of us. 🙂
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