The final day of our conference has opened doors and galvanised change. To commence the proceedings today, a gentleman called Eric from Townsville, living with a diagnosis of dementia was added to the program at short notice and asked to tell his story. Eric’s story clearly showed us the human cost of this hideous disease. He was followed by a young man, Joseph who told the story of his father’s Alzheimer’s disease, and the effects it has had on his whole family. His journey has inspired him to study music as therapy for people with dementia, and was deeply moving.
Many days I talk about giving up my advocacy work, as I feel like it is not making a difference, or change seems too difficult to achieve. At these times, my dear husband nags me to keep going, or someone or something reinspires me to keep going. Many times it is a comment or comments here. Yesterdays comments definitely helped reinvigorate me. I may have seemed a little harsh about the voices of PWD missing from the proceedings, but without them, a conference claiming to be giving a voice to PWD is simply increasing our social isolation and inequality if we are not on the plenary program. It caused a groundswell of unrest leading to a tsunami of change that I believe will become cemented in history for people with dementia all over Australia; there will be no turning back and we will have a voice.
Today I was asked to speak about the new dementia advisory group being set up by Alzheimer’s Australia, for people with dementia, run by people with dementia. In the lift coming back to our hotel room, we met one of the new members of the research group I am on, and she complimented me on my presentation, and then with tears in her eyes, told me it was the best one of the three days, and has inspired her to keep going, to continue to advocate in memory of her partner who died recently from younger onset dementia. I feel deeply moved and humbled by this acknowledgement, but do know how she feels as so many of you have inspired me in the same way.
And so it seems, advocacy does work! Below is my speech from today.
“Thank you Rhonda Parker (CEO of Alzheimer’s Australia WA) for inviting me to speak. I feel honoured and humbled to be representing all people diagnosed with dementia, of all ages, in Australia.
My thanks to Alzheimer’s Australia Tasmania for hosting this conference, and for all your dedication and commitment to the event, and also for engaging the extraordinary Robyn Moore as MC, her love and passion for the lives of PWD and their families continues to inspire us all.
It is my great pleasure to be able to report further progress towards setting an Alzheimer’s Australia dementia advisory group, which Eric referred to is morning.
I have been advocating for this since meeting the Scottish dementia working group members in London at the ADI 2012 conference, and would like to thank Glenn Rees, the CEO of Alzheimer’s Australia and his wonderful team for working so hard to support this goal. I would also like to acknowledge Christine Bryden, the first person in Australia with dementia to speak up for PWD. She has been a trail blazer for pwd in Australia, and along with Richard Taylor in Texas, has been my mentor.
So what are we going to achieve by having an advisory group for PWD, run by PWD?
Firstly, there should be nothing about us without us. We also hope to ensure the human cost of dementia is more fully understood. Thankyou to Eric and Joseph who bravely shared with us their very personal stories this morning.
The group hopes to empower PWD, and to give them a voice about what it is that is important to them, and whether the current services available to them fits their needs. We want the group to be supported by all ages of PWD, from every pocket of Australia, and to represent every culture.
We hope to influence governments, service providers and the general community through raising awareness that we are still fully human, and with support, in the same way as any other person with a disability, and can live fulfilling lives contributing with purpose in meaningful purposeful ways.
We are thrilled to be setting this up now, perfect timing to be able to work with AAWA and ADI towards the 2015 conference in Perth, and it now gives me pleasure to invite Dr Glenda Parkin from Western Australia to say a few words. Glenda has a PhD in education, an honours degree in geology, and was a Principal at two prestigious colleges in Perth until retiring due to a diagnosis of younger onset dementia aged 57 in 2010. Glenda is going to welcome you to her beautiful state.”