People with dementia are getting into the driving seat

about me without me 3Dementia Alliance International (DAI) was set up by people with dementia to ensure we have an authentic voice, and so that we are not taken over by either organisations or family carers. It is important we have our own voice, just as people with disabilities, the gay community, and Aboriginal and Torres Strait Islanders fought for over thirty years ago.

We are currently unfunded, although have raised some funds ourselves, and this year, received s small grant from ADI for some members to be able to attend the conference in Perth and the WHO meetings. They have also given us a stand in the Exhibition area free of charge, and we are thrilled with this collaboration and support.

After many months of collaboration, we were accepted as the peak body for people with dementia globally, and all of us at DAI are very proud to be working with Alzheimer’s Disease International (ADI) to support each others organisation, something we are truly proud of. Each organisation has a lot to offer each other and working together means we will both reach common goals more quickly.

I feel extremely proud to be a co-chair and one of the co-founders of Dementia Alliance International, and next week, as far as I know, I will be the only person from Australia invited to speak at the WHO Ministerial Conference on dementia next week in Geneva. Not bad, for a middle aged, unemployed volunteer advocate who is also living with dementia…

The push for nothing about us without us and for inclusion and a voice started by DASNI in 2000, and continued on by the Scottish Dementia Working Group (2002), the European Dementia Working Group (2012), the Alzheimer’s Australian Dementia Advisory Group (2013), the Irish Dementia Working Group (2013), the Japan Dementia Working Group (2014) and most recently the Ontario Dementia Working Group (2015), is taking traction.

As far as I know, all of these Dementia Working Groups are also supported with funding by the peak advocacy bodies in their respective countries, an important collaboration and partnership for which people with dementia are obviously very grateful of; most of us are unemployed, many living on the poverty line, and also living with the various disabilities of dementia, so this kind of support is imperative for us to have a real voice.

Thanks must go to the people with dementia who started DASNI, and then those in Scotland for starting this push for a voice, our autonomy and our human rights, and for all those people with dementia who have followed in their footsteps, and the advocacy organisations supporting these very important Dementia Working Groups.

5 thoughts on “People with dementia are getting into the driving seat

  1. Hi Lovely article, it is so important to hear the voice of people with dementia, their lived experence.
    The Scottish Dementia Working Group has been going for over 10 years.
    I believe formed around 2002 or 03, not sure when the official date is counted from.

    • Thanks Donna… I thought I added the year from the website, which is 2002 but instead I put 2012 – now corrected!! DASNI was 2000, so you were close behind them. What I find extraordinary is that it has taken the world so long to catch yup to the FACT people with dementia still have capacity to speak for themselves!

  2. Thank goodness PWDementia have a clear, rational, persuasive voice in you Kate to push for proper recognition of the human rights of people with dementia.

The only thing missing in this global conversation is YOUR voice... Thank you.

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