The World Dementia Council

about me without me 3The World Dementia Council meets this week, without anyone living with a diagnosis of dementia, or any family carers, invited to be a part of this event.

Yesterday I received an open letter (via email) from Dr Shibley Rahman, personal friend, colleague and academic in dementia from the UK, regarding the ‘World Dementia Council‘. I asked him if I could publish it here, and instead of the original letter, he has taken more time and committment, and written it as an open letter to Dementia Alliance International (DAI). I asked him if I could publish it here, and have permission, but will also include it on the DAI weekly blog later this week, with DAI’s response to them as well. Thank you for your professional insights Shibley, and for your praise of the work we are doing at Dementia Alliance International. The letter is attached as a pdf here Open letter to Dementia Alliance International

It continues to astound me that organisations and committees such as the World Dementia Council still consider it is appropriate to meet, without people with dementia. The catch phrase, “Nothing about me without me“, first used in the disAbility sector, and which has been used in the dementia sector by people with dementia for over 12 years, still seems to make no difference. We have had a global voice now for some time, and many are still very eloquent and capable, and yet, we are still not being included.

People with dementia do matter, and in their claim fo the most basic of human rights – full inclusion – continuing to exclude us about the very issues that directly affect us and matter to us, simply magnifies and exacerbates the stigma, isolation, discrimination and the myths of dementia, that we cannot self-advocate. Dr Gillings from the World Dementia Council is wrong (see below)… We are no different to the HIV activists, and we can and do advocate and activate for ourselves, and if he has missed this fact, then he must have his eyes and ears shut.

Excluding us from a council as significant as this, would be no different to excluding gay people from a World Gay Council, or Indigenous people, from a World Indigenous Council, or disAbled people from a World disAbled Council. People with dementia deserve to be at this particular table, and the lack of insight, and lack of respect afforded us by not including us, however unfortunate, was simply too predictable.

Dr Gillings

11 thoughts on “The World Dementia Council

  1. Pingback: Statement to the World Dementia Council - Dementia Alliance International

  2. Kate, people who have been relegated to 2nd fiddle, whose thoughts have not been encouraged need to start some where to regain lost integrity. How would you tell them to start?


    • I’d say start with joining a community that empowers and respects them first, such as Dementia Alliance International, then start speaking up, whether simply about improving their own care and choices, or speaking for themselves, rather than allowing their family carer to speak for them (if they do still have a voice – and I see many who do, but their carers take over too much)… also advise joining advocacy or consumer groups in their local areas… just a few ideas, but if we don’t speak up for ourselves, I can guarantee from experience others will decide what it is that is best for us, without asking us.


  3. How can you ‘activate’ on behalf of someone you don’t talk to, include and actively try to exclude from every discussion and decision.

    It is a disgrace, abuse and a human rights issue.

    Am I an activist for people with dementia, absolutely! I’m an activist for people living with dementia to have their own voice not my opinion and voice.

    For god sake they are people, treat them as people who have valued opinions and huge experiences.

    People with dementia are trying to LIVE with Dementia nobody goes out of their way to suffer.

    Are people Gay sufferers, Wheelchair suffers of course not.

    When will people grow up, seems to me Dr Gillings is more concerned with the availability of ‘lab rats’ than the quality of life that people living with dementia have..


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