Attending the Alzheimer’s Australia 15th national conference this week has had its up and downs, like life in general, of course! The two days preceding the conference were very busy in meetings, something I take the time and energy to do to help ensure the voice of people with dementia were being heard. Yet there is still an extreme imbalance of our voices, as these committees are mostly made up of researchers, carers and supporting staff, and very few people with dementia.
The conference opening speech, given by our esteemed President Ms Ita Buttrose AO OBE was exceptional, apart from one comment, which just didn’t ring true. She said how far Alzheimer’s Australia has come in their fight for better funding and improving the lives of people with dementia, and even in the 2-3 years I’ve been actively involved in advocacy the change has been remarkable. But she said this was to be a conference where the voices of people with dementia would be heard… Not one person with dementia is on the program!
On Friday I will convene a meeting for people with dementia, which I initiated. Invitations only went out about 10 days ago, and well over 20 people responded, although I was told when I asked the conference organisers to help plan it that it was unlikely PWD would be interested. At this meeting we will discuss the global movement of PWD as advocates, and present the plans Alzheimer’s Australia is going ahead with regarding setting up a consumers group made up of, and for, people with dementia. My dream and hard work to give a stronger voice to all people with dementia since ADI London is on its way!
Remarkable that you were able to achieve so much spontaneously! Well done!
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Spontaneous is not the word we would use… the outrage amongst everyone, the organisations advocating for us, the professionals, the researchers, the carers, and the people with dementia was loud and clear! At long last, we are being supported by everyone, and it was thrilling on Friday to see the turn around. Thanks for your support from across the seas.
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Thank you everyone for your comments and thoughts… I love you all and do realise we all get it wrong sometimes. But without critique, we usually never know. Today is an example of great and positive change, brought on by the critique of many.
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Responders to this blog, please don’t be too harsh. Many hours were put in to supporting some wonderful people living with dementia who did present and have other roles at the conference in which they excelled – especially in the concurrent sessions. People who took up these roles with enthusiasm and spirit. Much was done that was good, and much is yet to be done to ensure the voices are heard. This is just one forum for many voices – and all those voices are in this together – even if we get it wrong sometimes.
Thanks for your blog and the work you do.
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You are amazing & I am proud to be your friend!
Love you heaps xx
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Congratulations Kate …… you are so inspiring!!! Thanks from all of us 🙂
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Kate…This is why your life was struck with Dementia. You were gifted a terrible disease to see how you would handle the situation. Would you use it to grow or allow it to take you down? You have used it to become a purpose and in helping others and in doing that you have grown well beyond your limits. The earth school gives us all our lessons to see if we will excel to the next grade or have to repeat it until we pass it. We suffer greatly in this world by putting our amount of suffering into the mix in deciding who is worse off. That is not how it works. We all have lessons that for us seem monumental to us and that needs to be respected. Who is someone with a clear thinking brain to decide what kind of attention Dementia will receive? Those afflicted should be front and center in helping to design the care that needs to be given to those suffering. Keeping fighting to have your voice heard and the voices of everybody else! You are the pioneer and unfortunately they suffer the most but they also gain the most meaning out of life. Good luck my friend. As I always say, our time is close at hand!!! Blessings and love…VK
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well done you and Shame on THEM is all I say
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Hello, good for you, if we don’t do it – who will? The stigma filled conference organizers who honestly believe we have no interest/drive in helping ourselves, each other, and in educating people like them?
I applaud and support your on going efforts Kate. You are a role model for your entire country. Keep it up……and thank you.
Richard
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My dear friend Richard… I was only speaking to my husband about you this morning, and we were worrying about how you are!! It is SO GOOD to hear from you, and YOU are the reason I have continued to advocate, and not give up. Thank you. Kate
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You go girl!!
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Good on you Kate! Who are we to represent without consultation from the people living with dementia themselves!
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