Anyone who has followed me here for a while will know that in 2008, following a diagnosis made by my neurologist of a young onset dementia, I was advised to prepare to die, via aged care respite, which I ultimately trademarked as, Prescribed Disengagement. I was not supported to live well, or positively at all, and received no referrals to rehabilitation, such as speech therapy, or even the most basic things such as increased exercise or lifestyle changes.

On the pathway I was soon to choose, I was inspired by two things; 1) having been a nurse and realising what post dx pathway I would have received if I’d had a stroke at the age of 49 instead of dementia, and 2) my university teaching me to see the symptoms as disabilities, and then providing ongoing disability assessments and support that allowed me to continue studying.

Anyway, I soon started to meet many hundreds of people either online or in person, who had also been diagnosed with dementia and given the same harmful prescription of disengagement.

I’ve published articles on it, written numerous blogs about it, spoken publicly about it, as many others had before, and after me.

In 14.75 years, I have only met one person who said their post diagnostic experience was positive. Yes, you did read that correctly, only ONE person. With more than 10,000 new diagnosis of dementia every year, that continues to appall me.

But, the sector, including researchers didn’t seem to want to change, or even to believe it was not unique to just a few of us. Various articles and research projects started to emerge on the topic, which initially felt like attempts to prove my theory wrong. Frankly, I wish they had…

However, the more research that has been done on the post diagnostic experience, and the more surveys done and reports written about it, the more this theory (and practice) has been proven to be right.

Check out the ADI 2021 and ADI 2022 World Alzheimer’s Reports, which both found people with dementia and our families do not receive adequate support. The COGNiSANCE project found the same, as has the STRIDE project. The difference between those two research projects, is the first was a 5-country project, in predominantly high income countries, the lattter focusing on low and middle income countries. Both found similar results, in that people are not receiveing adequate access to timely diagnosis, or adequate, if any post diagnostic support.

Many organisations and people are now busily promoting change, such as a recent ADI webinar which highlighted key findings and recommendations from their World Alzheimer’s Report 2022 as to how dementia post-diagnostic support can be improved worldwide.

Canada just also just released a report that it is unprepared for the rising rates of dementia, and that evidence shows all levels of government are ill-equipped to handle the boom of dementia patients poised to overwhelm Canadian health care in the coming years. The “… report shows that Canada is falling behind in the global race to deal with the increasingly complex needs of a rapidly aging population–the latest census data shows people 85 and older are now one of the fastest growing demographics in the country (861,395 people in 2021). 7,021,430 Canadians are over 65. Given that the risk of dementia doubles at age 85 (to 25%), the window of opportunity to get ahead of an inevitable health care crisis is growing alarmingly slim.”

They are not alone.

My concern, is why it has taken so long to declare the truth and act towards changing it, and why people without dementia would not believe people with dementia and advocate with us, for this change. Many people with dementia and their families or care partners have been stating in varying ways for almost four decades that they receive poor care, or worse, no care or support, and have been campaigning for change. Even more concerning, parts of the dementia sector has been willing to implement two programs (DFI’s and BPSD) that both had little or no evidence based research to support them, but have consistently refused to accept we get a raw deal. If we have to wait for Evidence Based Research (EBR), to do the right thing, something is very wrong with our world and systems.

We’re a weird species…