It is indeed an honour to be listed as a State Finalist Australian of the Year 2016, and yet I feel strangely uncomfortable being named amongst this formidable group of Australians, or even being a finalist at all. My work as an advocate for people with dementia, which in fact is now more than 47 million around the world, a statistic that is growing at a rate of one new diagnosis every 3.2 seconds, is to improve the lives of us all.
What happens currently, even in wealthy Western countries, is not only unpalatable, it is unacceptable. I would even go so far as to say it is unethical as it is the only disease I know of where people are told to go home, get their end of life affairs in order, and get acquainted with aged care, and that is regardless of age. It was not even vaguely inviting to be told at the age of 50 to start going to ‘day care’, provided by an Aged Care provider, once a month, to get used to it. My advocacy and activism is important, and also, I have a very vested interest in it, so perhaps what I do is simply selfishness?
But, in reality, I do this work, almost all of which is unpaid, not to receive awards, but to improve the lives of the 47 million people already diagnosed. It is however, deeply humbling and truly delightful to be acknowledged for my work.
I do it because I absolutely, 100%, want to change the world. This is a list of a just a few of the issues I am working on addressing, and we need action urgently;
- Improving the diagnostic process, including what happens at, or very soon after diagnosis
- Getting rid of Prescribed Disengagement®
- Improving treatment
- Improving how people behave towards us, and how they treat us; it is imperative we remove the shame of having a dementia
- Reducing the isolation, stigma and discrimination
- Providing new pathways of support for people with dementia to learn to LIVE BEYOND DEMENTIA, rather than to simply go home and prepare to die
- To improve the lives and experiences of those who support and love us, and those who are being newly diagnosed each day
- To ensure our basic human rights are fully met, in part by advocating globally on our recognition under the United Nations Conventions of the Rights of Persons with Disabilities (CRPD)
- Ensure rehabilitation and support for the disabilities caused by the symptoms of dementia are provided, automatically, like they would be for everyone else
- Changing the language of dementia to one that is empowering and enabling, away from the discourse of suffering, victim-hood and death
- Full inclusion and citizenship in our communities, and in the meetings and conferences that are about us
- Dementia enabling environments, in the same way legislation ensures we have wheel chair ramps
In Australia, we have more than 342,000 people with a dementia, and almost 26,000 who are under the age of 65, known as younger onset dementia. It is unacceptable that the last cohort should have to access services that are age appropriate. In fact, what I have been told recently is that what is ahead for those of us with younger onset dementia in Australia, is going to be worse than it is now… but I will write more about that in a few days.
With the collective dreams and goals of a few other people with dementia from around the world, I am one of the proud co-founders of Dementia Alliance International, as people with dementia had until then, not had an authentic voice. With the very best of intentions, we have been overshadowed by the voices of care partners, advocacy organisations, clinicians and researchers.
The time is NOW, that the collective voice of people with dementia all over the world is heard, and acted upon. It must no longer be “About us, without us”.
Perhaps being a finalist in this prestigious award, and a finalist in the National Disability Awards, will help improve the lives of people with dementia and our care partners and families?
Perhaps as a recent winner of an International Dementia Leader 2015 Award, a Dignity In Care Achievement Individual Award, for my ‘outstanding contribution to Dignity in Care’, and the Bethanie Education Award, will also help put our voices into the public domain more clearly?
Thank you to those people who nominated me, and thank you to the organisations who felt my work is important enough that I have either won an award, or to have made it as a finalist. I really do want to change the world…