Since my own diagnosis of a younger onset dementia 13 years ago, I continue to be disturbed by the lack of recognition of dementia as a disability and lack of proactive support to live with dementia.
People newly diagnosed with dementia already have their hope taken away at the time of diagnosis, so to have it taken away again (repeatedly) due to the experts refusing to accept the fact that dementia is a condition causing cognitive and other disabilities, and therefore who denying us proactive disability support at the time of diagnosis in any work they are doing, takes away any hope we may have regained after that!
It is extremely bad for brain health, to have our hope taken away by any diagnosis, including dementia.
Having been advised by every professional working in dementia (except my neurologist) to ‘go home, get my end of life affairs in order, give up work and give up study…’ and even ‘to get acquainted with aged care so I would get used to it’, it is curious to personally know so many people with dementia all around the globe who have lived way beyond the projected life span they were given at the time of their own diagnoses.
Thankfully my university taught me to see the symptoms of dementia as disabilities, and provided me with disability aacssesmnt and then very proactive disability support to keep living Kate Swaffers life, not too long after diagnosis!
Of course, I did not especially like accepting another seemingly negative D-word.
Accepting I had dementia, and even accepting the label of dementia was bad enough, but accepting dementia as a disability initially added to my misery.
However, this critical step was hugely important in my ability to live more positively – and importantly, more independently – with dementia.
Not to tell people when first diagnosed with any type of dementia, that the symptoms are progressive disabilities, but also that with disability assessment and supported it is possible to maintain independence and a higher quality of life for longer, is akin to not telling a person newly diagnosed with cancer there are treatments (that may or may not work).Swaffer, 2021
In my thinking about what had happened to me, I soon realised that as there was no pharmacological soluton to prescribe, no ‘easy’ patient fix, meaning no cure and no disease modifying drugs to prescribe for my dementia, the medical and other health care professionals only saw the end, and so, inadvertently prescribed giving up on living.
They saw no hope, so they took away mine.Swaffer, 2021
So, my initial response was to find a term for this, and I then registered and Trademarked the phrase Prescribed Disengagement®, and very distressingly, people being diagnosed with dementia mostly report it is still happening.
To know this is still happening to people beign diagnosed with dementia more then a decade later, in spite of a sigificant amount of advocacy all over the world, and worse, is hard to live with. This is in spite of dementia being listed by the World Health Organisation as a major cause of disability and therefore a condition deserving of equal access to the CRPD…
I see this topic as important, perhaps even more so, than brain health awareness, hence why I have written about it in this blog series.
Taking away hope, is bad for brain health too!
If a university can provide disability assessment and support for a person diagnosed with dementia to continue living – why then, do the academic, health care provider and medical community refuse to?????