Dementia friendly… or not?

dementia friends logoLast week I attended and spoke briefly at an event, where the guest speaker Rachael Litherland was an invited expert from the UK, being funded to tour Australia and discuss the work of dementia friendly comunities in the UK over the last 10 years. She highlighted the work on dementia friendly communities that has been done, and then there was some time set aside for the attendees to workshop what that means. The session was really interesting and highlighted how far behind we are in Australia. Interestingly, and sadly, amongst the 70 people in attendance, there were only three (yes, I repeat, only 3) people with dementia… Another case of about us, without us, and the stigma and discrimination were exacerbated yet again. We are ‘still here’ even if we are incapacitated in various ways. How can an event like that possibly be dementia friendly, if it does not include us?

Kelly Vincent MP

Kelly Vincent MP

Imagine having an event to discuss what a disAbled friendly community should look like, without at least half the room full of disAbled people, rightfully speaking up for themselves? The Honourable Kelly Vincent MP, pictured here, would be justifiably outraged, and would speak up publicly about it. Luckily for her community, she has a position in the state government, and advocates brilliantly for herself and her community. I respect her enormously, and in fact, have had the most support personally for living well with dementia from the disAbility sector, via two universities. I love the fact they see me as a whole human being, with much still to contribute, and simply support me with strategies to manage or overcome the various disAbilties of dementia. They are fully inclusive, non discriminatory, have never stigmatised me, and have helped me see that I can live well, in spite of a diagnosis of dementia. Of course, I’ve had to take up the baton they passed onto me, but without this type of support, I may never have done so well…

13 thoughts on “Dementia friendly… or not?

  1. Pingback: The ugly parts of dementia | Creating life with words: Inspiration, love and truth

  2. Kate, is it like this at each event that you go to? the one you’re talking about probably had a focus on the UK speaker so having more disAbled people form Australia wasn’t as important as you were listening to what SHE had to say.

    But in terms of including dementia in the community ………

    – where were the requests for electronic submissions of ideas?

    – Where are the SHORT video talks with points that have already been covered? This would be necessary so that people who might want to contribute know what they mean with “changing communities” etc. I say SHORT because I can’t watch and concentrate on more than 5 minutes at the most and maybe others are the same.

    Hope it went well……

  3. Oh not good to hear Kate. I was to attend in Brisbane one but airlines hiccup prevented it. I had been told I was not allowed to attend the afternoon session, it was strictly for people with dementia. I understand there were many more than 3 people with dementia there. I then participated in a workshop the following day (I finally made Brisbane!) to thoroughly review the living with memory loss program for young people and there we separated into those with and those without a diagnosis. Those with a diagnose outweighed those without by two to one. Clearly Qld did better Kate.

    How frustrating for you – I hope you make a great deal of noise over it!

  4. Despite these people having the best of intentions, áble minded people” äre like able bodied people and sometimes as we know decisions are made easier if you don’t consult – it takes the ‘hard work’ out of the equation. (if only for them)
    I wonder also if there is no real registration body for people living well with dementia that conference convenors can draw upon to invite them? Perhaps this should or could be a project you and I do together – so that we can get it out there to get their ‘bums on seats?'” love you

    • My dear friend… yes, there is registration and statisdtics, and membership, but still we are ignored.. public consultation with or without them, is going to be my next step in this state. So perhaps I will call on you for help… It will help with the boredom!! love you too xox

      • Then there is NO excuse, it is pretty lame then, I will be more than happy to help you in any capacity, driver, envelop sticker, email sender, speaker. Let me know how to help you facilitate this change

  5. It’s a brave new world out there that you are exploring. Be positive! There were THREE there, which is infinitely more than would have attended 10 years ago.

    • Helo Jeff… lovely to hrear from you! I was only thinkng of you the other day and wondering if you were still there… I suppose 3 is better than none, but it is still a disgrace. The gay community, or disAbled community would be OUTRAGED, and yet it still makes people uncomfortable we want to have a voice…

  6. I can imagine how disappointed you are with the lack of inclusion in the workshop. It would be interesting to know how and to who the invitations to attend were offered, and how much encouragement and support was offered. Thank heavens you are there to speak out.

    • Disappointed would perhaps be the understatement of ths and last Century Wendy… 3 vs 70, unbelievable! And insulting to have to listen to others decide and discuss what is best for people with dementia, without asking them… it seems we still have such a long way to go, sadly 😦

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