More on the realities of advocacy

A fellow activist and dear friend of mine from from Germany attempted to comment on one of my recent blogs about the lack of services or tangible change for people with dementia and their care partners and/or families. Unfortunately she had trouble getting the comments posted, so sent them privately, and with her permission I’ve added them here.

Helga Rohra wrote:

You are perfectly right Kate. It is mainly the funding of projects for organisations – but – using PWD as support. The benefit for us, the real working together, is often a fake! I am very realistic and trying to fight and change dementia policy in my country – a hard work because people in charge DO NOT support our voice! Best support is for carer and people in nursing homes, who are no longer able to speak for themselves.

What a shame! It really takes away my Passion and Advocacy to realise again and again this situation in a highly appreciated country like Germany. Still, my, our fight my friend must go on! We are the Pioneers and the future generatio s will be grateful.

I remain committed to working for a truly authentic voice, regardless of where other organisations may head, or of how many others, including ‘dementia advocates’, might disagree with me.

It is however, heartwarming to know at least 3-4 dementia advocates / activists are on the same page. You know who you are!

In the blog I referred to above, I wrote that I believe most “organisations are invested in their own future, their staffing levels, and most of all influencing government and policy to keep their funding” and I still believe this to be true.

One such organisation was awarded another 25 million dollars recently, yet still does not provide real partnership with people wih dementia, and nor do they provide adequate services for them, or their families. Yet Dementia Alliance International, which was set up by, and is still run by and for people with dementia, and still has no paid staff, offers more than they do.

If our lives had not been tossed in the bin after a dementia diagnosis, termed by me as Prescribed Disengagement®, a great many people with dementia would still be working, and our time and expertise would still be valued!


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