It’s great to see new dementia advocates inspired and empowered to start speaking up for change. What’s disturbing though, is that after more than four decades of it, ‘we’ are asking for exactly the same things as the pioneer dementia advocates including Christine Bryden and James McKillop (who were both diagnosed in the last century), were campainging for.

Apart from there being a lot more public VOICES of people with dementia, sharing personal stories of how their diagnostic experience was poor and they receive little if any post diagnostic support, I cannot find any tangible change for the majority of the 55+ million people with dementia or their famileis and care partners.

Our ‘stories’ are used by people without dementia, for things such as fundraising for the dementia charities or other organisations, and by researchers to gain grants to allow them to do more research.

Ironically, hearing more voices, actually makes the status quo all the more disturbing.

More participation and voices has not yet meant any real change for people with dementia or our family members and care partners as a collective. This is except for those people sponsored by the dementia charities or universities to be involved.

As a long time ex-advocate, I’m too well aware that the initial joy of advocacy comes from being what feels like being ‘meaningfully included’, from thinking our volunteer advocacy will make a difference to people in the future, and feeling like we have got our lives back.

This is despite that for many years, we usually don’t realise it is still tokenistic inclusion and not equitable inlusion – as if it was, we’d be paid at commercial rates, or employed. It is also challenging to come to the awareness that we are being ‘used’ by people without dementia and the many organisations and charities who seek our voices, which would be pallatable if there had been significant change for people newly diagnnosed with dementia.

I watched a 30 minute interview you gave recently, and I loved everything you said. It’s a real shame that you keep on needing to repeat the same message over and over again (Anonymous, person diagnosed with dementia, living in Australia, 11 October 2022)

Whilstever research and reports continue to confirm that people with dementia still experience Prescribed Disengagement®, as well as high levels of stigma, discrimination, paternalism, therapeutic nihilism, othering, benevolent othering, ageism, abelism, minimal if any post diagnostic support including a lack of access to rehabilitation, and are institutionalised and segregated in assisted living settings, and harmed whilst in receipt of care, including chemical and physical restraint, high levels of sexual assault, we still have a lot of work to do.

And that eight people diagnosed with dementia had to set up their own organisation, Dementia Alliance International, to provide support for themselves and others with dementia more than 10 years ago, is truly shameful.

For the charities and researchers to keep doing the same thing over and over again, for decades, really does meet the definition of insanity, when they keep reporting so little positive change. I feel this way about advocacy too, and realised some time ago my own focus had to change.

To keep doing the same, repeatedly, for decades, makes no sense.

Note: The image in this blog represents the growth of organisations representing people with dementia and individuals workign in the field, all who live without dementia, contrasting the lack of change for people with dementia. It is still a desert for us…