The last two days I’ve been working in Sydney with a group of professionals ranging from experts in government policy, expert researchers, clinicians, medical doctors, service providers, NGOs, and dementia consultants.
Oh, and me, a representative of people with dementia, more often referred to only as a ‘consumer’.
Except I was also there in my other roles; an expert in dementia (not just the lived experience), a retired nurse, a past care partner, a current researcher, and the CEO, Chair and co-founder of a global DPO/NGO, currently representing people with dementia in 49 countries.
But I am a bit tired of many only seeing me as a ‘consumer’…
The last two days have still been a very positive experience, and hopefully the learnings for everyone will inform policy, research and practice, to transform the tragedy that is much of what’s currently happening in Australia in aged and dementia care.
We spent a lot of time today working on strategies to improve research, and significantly increase knowledge translation.
That is obviously an ongoing work in process…
But this two day meeting was a positive initiative, in part responding to the expected negative stories and ‘outcomes’ of the Royal Commission here, and a series of investigations, a body of work and numerous consultations which have been taking place the last few months.
One only has to read the daily transcripts of the Aged Care Royal Commission Hearings in Australia to discover just how bad things are here. I’ve seen, it’s not much different anywhere else in the world…
And although there are still a few things many still don’t ‘get’, I’m delighted to say that with each meeting like this that I attend, that is definitely changing.
A colleague and friend, and an emerging Early Career Researcher (currently doing her Honours, though I hope to be a co supervisor for her when she does her PhD!), was discussing her research with me. It’s groundbreaking and really fascinating, although like I felt a few years ago, I suspect she has ‘Imposter syndrome’, when sitting amongst long time academics.
I’m really looking forward to reading the book (photo shot of the book cover attached), which she highlighted to me as I think it will inform thinking greatly.
Truly Inclusive Citizenship remains continuously and systemically elusive for almost all people with dementia.
Unfortunately, although the world has heavily invested in them, the Dementia Friends and Dementia Friendly Community initiatives do not come close to attaining Inclusive Citizenship, let alone an Inclusive Community. Nor does any other initiative or program that comes to mind.
Whilst organisations including universities won’t pay me (or anyone else with dementia) for my time, nor my intellectual ability and novel ideas, or my expertise and significant professional experience, this particular brand of stigma will continue to feed the ‘otherness’ and discrimination.
A health care professional today referred to this as SLAVERY.
Necessary: patience and perseverance
Footnote: I’m overtired and have not spent much time on this blog! Hoping it’s not too rambling and actually makes sense…