I’m still in Sharjah, hence it is still the December 12 here, which each year is Universal Health Coverage (UHC) Day. I felt it important and extremely relevant to publish this blog today as UHC is something that has been missing in action for people with dementia and our families for almost forever.
About UHC: “On 12 December 2012, the United Nations unanimously endorsed a historic resolution urging all countries to accelerate progress toward universal health coverage as an essential priority for international development. UHC Day has become the annual rallying point for the growing global movement for health for all. Each year on 12.12, we raise our voices to share the stories of the millions of people still waiting for health, to call on leaders to make bigger and smarter investments in health, and to remind the world that health for all is imperative for the world we want.” (Source: http://universalhealthcoverageday.org/about/)
The current lack of appropriate care for people with dementia
In my time since being diagnosed with younger onset dementia, I’ve gone from deep despair due to initially believed what the health care professionals and service providers told me, which was that there was nothing anyone could do to slow down the progression of dementia and to go home and die vie aged care.
Initially I took their advice, and eventially termed it of Prescribed Disengagement®; I reviewed and updated my end of life affairs and even considerred which aged care facility I’d be willing to live in. Lucky for me, I was studying at the University of South Australia, and they taught me to see the symptoms of dementia as disAbilities which could be supported. I then started to self prescribe rehabilitation, including speech pathology, and made many life style changes including dietary changes and increased exercise, and I also focused on neuroplasticy by continuing to study, and reading Norman Doidge’s first book in 2012 confirmed this was imperative, and Doidge’s second book has plenty of evidence you can heal your brain.
Human Rights Day, December 11, 2017
On Monday (Dec 11) I attended day 2 of the second NCD Alliance Forum in Sharjah, and it was appropriate that I presented on Monday on human rights and social justice, and about the right to have a voice, especially as it was Human Rights Day
#standup4humanrights. You can read the blog I wrote about HUman Rights Day 2017, which includes my speech in the workshop session titled: “Promoting the meaningful involvement of people living with NCD’s” on DAI’s website here…
The challenges of advocates
In 2016, Australia launched their first National Clinical Guidelines for dementia. I was on the national Advisory group for the development of these guidelines, and actually begged for rehabilitation (physical and cognitive) for dementia to be included. At one point in a meeting in Sydney, one of the academic clinicians yelled at me, saying rehabilitation for people with dementia was a ‘waste of time’, and ‘there was no evidence for it’. I knew there was some evidence for it, published as far back as 2008. Rehabilitation was not included in the final guidelines, even though 71 or 72 of the recommendations had far less evidence based research to support them than rehabilitation! I was, to put it mildly, angry, as were a lot of people with dementia who had believed, because I was on this advisory group, rehabilitation would be included. My one very lonely voice didn’t win that battle, and I’m often reminded, ‘What would you know? You are just a person with dementia’.
I’ll continue to question why we often have to be ‘assertive’ to be included, and then when we are, why advocates are so relentlessly ignored. Personally, I think it’s due to the ‘Passive stigma’ of many (not all) in the very sector that ‘cares’ for us, including some of the researchers, which is a topic to be covered in my PhD. The following is a screen shot of a photograph I took from a power point at the forum today by key note speaker, Professor Jeremy Shiffman, Professor of Public Administration and Policy, American University, United States: Seeing the Big Picture: How Can Civil Society make NCDs a Political Priority?, which makes the same point (I’ve highlighted the relevant text inside a black box).
Universal Health Coverage Day, December 12, 2017
So, on this day of calling for Universal Health Coverage I am sounding a clarion call (again) for rehabilitation for dementia. I am pleased many more academics are now interested in this, including publishing articles, and holding seminars on the value of rehabilitation for dementia. Today I became aware of a recently published article Rehabilitation in dementia care in Age and Ageing, and I am referenced in it as reframing dementia as a condition with cognitive disabilities, and the publication on human rights by Dementia Alliance International is also referenced.
I’m pleased to have been advised by one of the authors this article was “written with the intention of highlighting that ‘people with dementia have been saying this for years, why aren’t we listening?’,” and that the authors “tried to explore the reasons why rehabilitation health professionals are so reluctant to provide services to people with dementia. It was also intended to frame the movement as being built by people with dementia.” The slide above asks the same question, although at the forum today, whilst there were no answers to this, the delegates were all advised to take action to ensure it changes.
Rehabilitation for dementia is a simple matter of rights and UHC
Dr Shibley Rahman has written on rehabilitation for dementia many times, including in blogs, for example this one earlier this year THE RIGHT TO HEALTH IN DEMENTIA CARE NEEDS PRIORITISATION OF REHABILITATION, and in his book ‘Enhancing health and wellbeing in dementia’ he wrote about it clearly (p 355). He also wrote a blog about Community Based Rehabilitation (CBR) in 2016. I wrote about rehabilitation for dementia in my first book What the hell happened to my brain?: Living beyond dementia, and Associate Professor Lee-Fay Low and I also wrote about it in our book Diagnosed with Alzheimer’s or another Dementia published in September 2016.
It really is a matter of human rights, and of affordable universal health coverage; it has little to do with published articles, blogs or books on the topic, nor how much evidence there is or isn’t for it. As an acquired brain ‘injury’ or neurological condition, causing various kinds of cognitive disabilities, it is simply a basic human right to include rehabilitation and/or reablement in our ‘care’ plans! It is in fact, a simple matter of Universal Health Coverage.
Ps. Sincere apologies for the long and rambling blog. I’m definitely over tired!