Dementia is of course, a topic that is quite rightly covered during the World Health Assembly (WHA). Members and staff of some of the dementia charities such as Alzheimer’s Disese International (ADI) attend, host side events and so on. I’ve attended a few of them, including the 2017 WHA when the Global Action Plan on Dementia was first adopted.

Back then, I was hopeful of change at the highest levels, but I soon became disenchanted by the annual, waffle, the endless spending by governments, charities and so many others attending the WHA.

The CEO of ADI, Ms Paola Barbarino was quoted many times by journalists and others covering this years WHA, and in the ADI Media Release last week titled, Global Dementia Emergency: only one in five countries has a plan, as cases set to nearly triple, warned us that “the world is heading towards a global health crisis, with just 45 (23%) of the World Health Organization’s 194 Member States having a national dementia plan in place despite unanimously pledging to do so by 2025.”

In the same piece, she says, “Even with a low target of diagnosing half of people currently living with dementia, the fact is Member States have not reached this target. This means more than half of people living with dementia won’t have access to new treatments, new diagnostics, and to vital care when they become available. National Dementia Plans are crucial to ensure this changes…”

Not extending this vitally important Global Action Plan would undermine the progress we have made in the past 8 years and limit the potential for governments to stem the tide that is coming.” (Paola Barbarino, ADI CEO)

Further comments in an article in The Carer are even more concerning, “The Global Action Plan remains the best tool available to governments to support those living with dementia, their carers, healthcare systems, and the wider society“.

I’ve found no evidence to support this to be true, yet it reads like a fact, and most people will believe it is fact.

Go figure, just like BPSD and the DFI’s that emerged with no evidence, two topics which of course, both deserve their own blogs again some day soon too. Perhaps for very different reasons, I’m not the only one who thinks dementia-friendly is unfriendly.

To be frank, I remain underwhelmed by the advocacy currently being done by any of the dementia charities, and worse, extremely confused.

Logic is almost always my first place to start, even before evidence based research.

For example, how can anyone say progress has been made, when the ADI 2024 World Alzheimer’s Report states that things have gotten worse in some areas in the last five years.

Nope, NOT progress.

At least, not positive progress.

And if the few countries who do have National Dementia Plans, are still not providing timely diagnoses, or 21st century care of people with dementia, do not support the care partners and family members of someone supporting a person with dementia, and people with dementia are still being Prescribed Disengagement®, that is not progress and more National Plans are unlikely to change that.

As someone living with a medically diagnosed rare young onset dementia, I find this extremely disturbing.

The other issue of course, is the negative narrative used when referring to people wiht dementia. There are numerous dementia language guidelines on website belonging to dementia charities, and branded as their own, but which they, and too often refuse to use.

The harm of being referrred to and advocated for by others, “… to advocate on behalf of the weakest amongst us“ is truly appalling, and highlights the continuing paternalism, stigma, and benevolent othering, and strengthening the myths and narrative that people with dementia cannot do for themselves, and are not deserving of a place at the table anymore.

Effectively, this language and approach is back to “about us, without us”.

The very worst example of this was the Alzheimer’s Society UK harmful advertisement, run twice over the last couple of years, suggesting each loss of function or capacity is a death. As far as I know, everyone only dies once, and that is when they stop breathing, which is followed by a funeral!

As always, the language of suffering is good as clickbait and even better for fundraising, despite harming the very people they say they support, and which is a narrative which completely ignores their own language guidelines, and the globally voiced concerns of a great many people with dementia and their families and care partners. But more on that topic for another day…

Professor Shibley Rahman wrote a piece titled, Twenty Fifty-Five: A Parody in the Style of George Orwell… ‘it’ is definitely a very bad joke!!!

Progress, but for whom?