Finding a voice for PWD

advocacy worksI’m often challenged by the fact that conferences, seminars, forums or educational programs about dementia, often marketed to people with dementia (PWD), and as events which are inclusive of them, are organised exclusively by people without dementia, and for the most part, without people with dementia as plenary speakers.

Many of you know I have regularly railed against this, and at a national conference earlier this year organised by the very organisation meant to be advocating for people with dementia, there was outrage about it, not only by PWD, but by most other delegates. The matter was just rectified on the third and last day of the conference, but it still reeked of segregation, stigmatisation and discrimination.

And then, every time I think the message is getting out there, I discover a new group of events without people with dementia on the program, and in fact many of the Dementia Awareness Week events have once again been organised without people with dementia on their programs.

In an email to find out if there was any way he could influence one particular event being held in October without PWD, I wrote the following to a friend and colleague working in the area of dementia as it is being held in the same place that he works.

“It seems to me if we held conferences, seminars or forums for the gay community, and only had heterosexual people organising and speaking at them, there would be an outrage… this would be the same for Indigenous or other CALD communities, or perhaps even a cancer conference. Thank you for supporting our rights.”

He replied;

“As you know I’ve always been on your side with regard to persons with dementia standing up and being counted (if they want to!) at conferences and presentations, and I feel that the general mood toward dementia is improving as shown by the number of new PWD’s who are not afraid or embarrassed to talk openly about their disease. You should be feeling very proud that there is this new confident group who are following in your footsteps, as you were one of the trailblazers!

Of course, I’m not saying that it’s a perfect situation, it’s just very much better than it used to be, and now the march forward to recognition by the world at large has started it will improve the situation for everyone. Thank you for your continued support and voice on the subject of dementia, we must do our best to keep the world aware of the approaching tidal wave.”

Dementia Awareness Week is upon us right now, and I’m very thrilled to have been reporting the last couple of days about the new Alzheimer’s Australia Dementia Advisory Committee (AADAC) as it has held its very first meeting in Canberra. I am very proud it has happened, and glad I didn’t give up with my dream along the way! Of course, that was partly due to my DH, and a lot to do with the vision of Glenn Rees, AM, the CEO of Alzheimer’s Australia.  So now, there is hope that future dementia events and conferences will be FULLY inclusive of people with dementia, although I know it is still difficult to get people to see change is needed, without them feeling threatened.

I’ve often coined the phrase, If it ain’t broke, don’t try and fix it, but in this case, it is still broken, and definitely needs fixing. The AADAC has a lot of work ahead of it, and full inclusion of people with dementia is certainly one of the top priorities I hope we can impact positively. As the saying goes, Nothing about us without us, so it is onwards and upwards as all people with dementia become re-empowered to, as Richard Taylor would say, stand up and speak out.

14 thoughts on “Finding a voice for PWD

  1. Kate – maybe you can do a blog post with the changes that should be made to the conferences ….. how would the PWD do things differently? Because I don’t really know what you mean since I’ve never gone to one etc.

    Know what I mean? Thanks


  2. Hello, even when one or two folks with dementia are on the program I don’t believe the organizers still really get “it.” We should be well represented on the organizing committees. We should be in the majority of many/most of the doing. Some us need coaching, some of us need practice, some of us need someone next to us, but we all need to be at the center of our lives, our disability, our attempts to educate others, to advocate for ourselves.

    We wouldn’t say to folks in wheelchairs, you can’t speak because you can’t get in the room by yourselves. We don’t build ramps for folks with dementia, because we haven’t put enough thought and effort into thinking what those ramps would look like. As usual Kate you are right on.



  3. Keep up the great work Kate! Bravo to you 🙂 So glad the PWD world has you fighting for it. Lucky people. Still not receiving your posts in my email. Talked again with WP and they keep saying they are fixing the problem and yet it continues…Who knows…I just keep trying to remember to pop in here on my own. Forgive me if I forget. Happy weekend! Much love….VK


  4. Fantastic Kate. I attended a conference in my home county in England this week at which the most valuable contributions came from a PWD and a former carer whose husband lad lived with dementia for more than ten years. The least valuable contribution came from a politician. The balance seems to shifting, albeit slowly, and I see it as my job to give my lovely Mum a voice in this debate.
    Keep up the great work.


    • Thanks Duncan… and keep up the wonderful support for your mum. I’m sure you give her a voice too, which is wonderful. The more we speak up, the better the world will become for people with dementia, and their loved ones.


  5. Keep up the good work Kate. Who else but someone with this condition could possibly understand? I only wish my husband could talk to me about how he is feeling. One can only imagine the sadness he must be going through to not be able to express himself. You are doing what he can’t.


  6. I usual find when people say it’s not as bad as it was it is a convenient excuse not to face the realities of how bad and ridiculous the situation is.

    A great step forward Kate and congratulations for all your hard work. But the more I listen to you and other people living with Dementia the more angry some people make me. ANGRYBUB. xxxxxxx


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