Giving a voice to people with dementia

voice_of_user2Since ADI 2012 in London, I have maintained contact with a few people I met from Scotland, many who are members of the Scottish Dementia Working Group. This is the eleventh year they have been operating, and they are a powerful voice and strong advocates for all people with dementia, as well as a wonderful support network for each other. Through one of these global friends I was lead to this website;  A Dementia Voice: You can still live a life with dementia. WOW! It is a wonderful website for people with dementia, and their families and friends as it gives insight and information, and empowers people with dementia to have their say.

It would be sensational to set something up like this in Australia. The site I started last year did not grow legs. Others in Australia also have blogs and websites, but to have ONE site for everyone with dementia to give all people with dementia a voice in Australia makes much more sense.

We are getting close in Australia to setting a group up specifically for people with dementia; it will not the same format as Scottish Dementia Working Group, but it is a great start. The distance between cities and for rural people in Australia, as well as funding is prohibitive to setting up a group similar to the one in Scotland, but to at last have a real voice for people with dementia in our sights is music to my ears. I have been advocating for this for over 12 months now, and feel quite emotional to think it is actually going to happen.

For those of us who can still use computers, the online global support is very tangible, and many online friends of mine, most whom I have never met are also active in their own communities. It is like having an online support group of people with dementia, as well as providing information for people who are carers of PWD, or advocates for, or working or researching in the dementia sector.

6 thoughts on “Giving a voice to people with dementia”

  1. Pingback: Alzheimer’s Australia Dementia Advisory Committee | Creating life with words: Inspiration, love and truth

  2. Sounds like things are moving Kate…Put out into the universe that you could use some help in getting everything off the ground and it will come to you.You are doing great things and the world of PWD are lucky to have you. Heck the whole world is lucky 🙂 Good luck Kate and keep at it. Change is happening! Blessings..VK

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  3. I went to the Mercury cinema today and preceding the main film was a short made through the Media Resource Centre about dementia: gave a daughter’s superficial, bog standard perspective on her mother’s dementia. I immediately thought of you about approaching the MRC to make a well thought out film on EOD and dementia generally. I even know a film maker and former lecturer in film and media studies who may be prepared to help you – he saw yr fringe show and was v impressed. xoxoxo

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  4. Well done to you my girl, you have put in an incredible amount of work to get this happening. I am in awe of you and the huge amount of effort you put into this.
    You’re No1 fan BUBxxxx

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  5. This is great news, Kate! Scotland seems to be leading the way in many respects – they have just announced a commitment to consistent support for carers too.

    I think you also know about dementiachallengers.com for carers in the UK… but with fab tips for carers – and indeed BUBs (love that phrase you have coined!) – worldwide! 🙂

    Keep blogging, Kate. Keep campaigning. And I love the red T-shirt! Gill x

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