The short Vimeo I am posting below today was made by a friend and colleague in Scotland, which I found to be incredibly profound. For me, it spoke mostly about truth. But it also speaks about lies and deception, and arrogance and the lack of scrutiny. As I have become what others often tell me – a rebel, disruptor, or a whistleblower, or simply someone willing to lose ‘friends’ by talking about topics many others are too afraid to speak up about. This short movie really spoke to my heart.
Within this short movie, Peter says, “Establishment does not receive the scrutiny it deserves.” This is true for many, not just in medicine, or more specifically in the dementia sector more generally. For example, the development of technology for people with dementia also does not receive the scrutiny it deserves, and has found ways to avoid ethics approvals, which is always needed by researchers.
There is also something seriously wrong, if anyone actually believes a short Dementia Friends awareness session is all the education and knowledge they or their staff need to know about dementia. No wonder the experiences of stigma, discrimination and isolation are still so common.
In fact, a few years ago, a community care provider in Australia asked me to endorse their ‘Dementia Friends training’ for staff, and when I asked for the content, they told me it was a short 30 minute dementia awareness session for staff working with people with dementia. Before this ‘training’, their staff had NO education in dementia. Obviously, I was not willing to endorse it, and also objected strongly to them even calling it dementia education. My voice made not one bit of difference…
The arrogance of the western medical community, and the ‘Establishment’, alongside the unwillingness of organisations to do little more for people with dementia and our families than ‘engage’ us to use us for fundraising, needs more scrutiny and attention too. Too often, those of us who want tangible change rather than more rhetoric receive negative reactions from people who do not want to change, or are too arrogant to think they or their organisation may need to.
Often I read articles or things like Facebook posts, or listen to well-intentioned people including academics, clinicians and other health care professionals, as well as many care partners on social media, I mostly ‘hear’ how awful it is supporting a person with dementia, and also what they think is best for us. This is well-intentioned, and done with good will, but I also agree with Peter that “good will can cause as much damage as ill-will if it is not enlightened.” The way care partners are still mostly advised to take over for us, is done with the best of intentions, but, in reality, it further disables us, and strengthens the Precribed Disengagement® still being recommended to most newly diagnosed people with dementia.
So, if you have time, please watch and listen to this movie by Dr Peter Gordon. I hope it will change your thinking, as it did mine. It definitely inspired this rather rambling blog!
ASTROV, by Dr Peter Gordon