Yes, just as it is usually non-Indigenous people who are responsible for racism, people without dementia, and even some people with dementia, are partly responsible for stigma, discrimination, the continuance of rights violations, and the systemic injustices and exclusion many are still experiencing.

The dementia friendly initiatives have done nothing to improve things either, other than stigma and attitudes towards people with dementia being worse in 2024 than it was in 2019. Oh, that is except they have increased the employment rates of staff in dementia charities and other organisations, and a great number of people without dementia (PWoD) continue to be employed.

It’s not personal, but I also continue to be concerned seeing a great many conference panels or programs listing their ‘expert speakers’, but who still have no people, or perhaps only one person with the lived/living experience of dementia. The Alzheimer’s Europe conference in Bucharest did have many people with dementa presenting, who are members of their Working Group of People, although many people with dementia might contest that their inclusion, is exclusionary, as it is often at the cost of a more diverse group of people with dementia.

Anyway, after 4 decades of advocacy for inclusion, we are still waiting for it to be equal.

I’m constantly losing respect for people, especially those who are invited as speakers, who still don’t (or won’t) call this out. For well over a decade, I have asked speakers without dementia, including care partners, not to accept invitations to present, if there is no one with dementia listed as a speaker. It remains rare that anyone does this.

Everyone it seems, wants to be on the programme, and the shiny star syndrome is alive and well including in ‘dementia-land’.

And I’m really going out on a limb here, as I also believe many people themselves diagnosed with dementia are equally responsible for exclusion.

They love being the ‘Teacher’s Pet’, and will not give up their hard fought positions in the limelight for new advocates. I was likely considered one of them, but in my heart – and files – I know I have always worked hard to empower new advocates to take leading roles.

It was why I was so insistent when I founded the Dementia Australia Advisory Committee that their Terms of Reference only allowed someone to stay on it for a maximum periond of four years. As soon as I stepped down from my role as the inaugural chair, the new members of the group changed it, removing the time line, making it yet another exclusive, elitist club, focused on organisational funding and branding, rather than real change.

Note, this not meant to be disrespectful to anyone, just an observation I’ve only ever heard others speaking about over coffee, and who wish to remain anonymous as they have all said in differfent ways, ‘if we publicly disagree with the dementia charities, they drop us as advpcates and speakers’.

So much for authentic advocacy… And of serious concern, one of the other issues this creates, is that participation in research by charity’branded advocates is likely skewed.

Someone’s Gotta Say It…