It’s still a long road to full inclusion for people with dementia

speak upThe road of advocacy and self advocacy is a really tough one, especially as most often, to have become an advocate, you must have become part of a marginalised group that is being discriminated against, or speaking out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing someone thinks they are not doing things well, or perhaps the change wanted, does not fit their own agenda or business plan.


As the life of Dementia Alliance International (DAI) continues to grow, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems at least to me to be the most productive way to be an advocate. We must all speak up for our basic human rights to not only a voice, but to full inclusion on the things that impact OUR lives.

Along the way, DAI is also providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well. Alzheimer’s Disease International is really listening to us now, and we have collaborated with them and in the process, become the peak body for people with dementia in the world. This has been followed by The Alzheimer’s Society UK, who we are engaged in currently with talks about supporting each others work.

These are indeed, exciting times…

We now all need our own state and country advocacy organisations to come on board, to do the same, and to really listen to us… as together, we improve the lives of people with dementia and our families.

It is also time for all of our supporters to speak up for us, and the recent disgraceful piece of ‘journalism’ (not that I would call it that!) by the Australia Financial Review has brought a lot of voices to the table, people with and people without dementia. We now also need people without dementia, to start speaking up for our proper and full inclusion. If they don’t, they are complicit in contributing to the stigma, discrimination and isolation we experience.

It is no longer acceptable to continue to do anything, about us, without us.

One person with dementia, is never, not ever, enough. 

9 thoughts on “It’s still a long road to full inclusion for people with dementia

  1. “It’s still a long road to full inclusion for people with dementia” Agreed, agreed, agreed. It would be interesting to see a timeline of when the AWARENESS that Dementia/Alzheimer’s existed first began in the medical field as well as in public opinion, when people began publicly admitting to and talking about it with and for their loved ones, when advocacy for those diagnosed with Dementia/Alzheimer’s began, when those diagnosed started speaking up for themselves, etc etc.

    Also, not to diminish the journey … it is still a long road to full inclusion for people with dementia, of color, the gay community, immigrants, those marginalized by society, etc. Why oh why is so much time and energy and money and sadness spent on something that could if solved in a moment if people could just realize we are all one, all the same, all need love?


    • I totally agree re the other groups, and sometimes wonder if Dr Martin Luther Kind Jnr would be crying in his grave as how far things do not seem to have changed for Negro Americans! It is the same in Australia for Aboriginal Australians… and the gay, disabled and other marginalised groups. Love is the answer, so the more of us who choose that path, the better, at least for us!


  2. Pingback: It’s still a long road to full inclusion for people with dementia | Dementia Caregivers Blog - Hope and Harmony -

  3. A lovely and honest blog, about speaking out for people. We all make enemy’s as we travel , but to be very honest about it, you can never please everyone, and anyway why should you try.

    If people cannot accept what you say, they are in the wrong place.

    Over the years I have always tried to be honest, but I admit that there have been times, when I opened my mouth, only for the wrong words to come out, or the right words in the wrong order, and that puts a different slant on what I intended to say.

    But you’re a star and an inspiration to thousands around the world. So forget the others, and enjoy what your doing


    • Thanks so much dear Ken… it was wonderful to finally meet you and Janice, as well as hear about your many years of advocacy in the UK. Oh, and I look as tired as I was feeling in that photo you posted on your blog!!


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