Before the COVID-19 pandemic, most of the world looked the other way when faced with the reality that even the most basic of human rights were being denied to people with dementia, including at the time of their diagnosis and for the rest of their life thereafter.
What this pandemic has done, is to highlight more surely than every before, just how much harm is done, and how many basic civil liberties are denied to us. Yes, even in 2020, at the time of diagnosis, people are stil being Prescribed Disengagement®.
We all know that it is still happening to most people with dementia, but still most choose to look the other way, and it is perhaps only since the COVID pandemic, that the inequities in equal access to universal health coverage, and the loss of rights as people with acquired dissabilites, including, or perhaps especially those from dementia are being more fully realised.
In fact, I attended an online DAI online Cafe yesterday, and not one person with dementia in attendance had a different experience to me. Every single week at the DAI peer to peer support groups I attend or co host, newly diagnosed members report the same, so in spite of significant advocacy, nothing has changed.
“You may choose to look the other way but you can never say again that you did not know.” (William Wilberforce)
As someone who has publised a lot in the last 10 years, including thousands of blogs, numerous research articles, books and poetry, it is always of interest to me to know if the meaning of what I have written is taken in the way I mean for it to be understood.
If not, it’s either that I have not defined what I meant well enough, or alternatively, people have a biased view on a particular topic, or their own agendas which can take over from a fuller understanding.
My theory of prescribed disengagement stemmed from the following , which happened to me soon after my diagnosis:
Subsequent to my being diagnosed with frontotemporal younger onset dementia in 2008, at the age of 49, health care professionals and service providers all told me the same thing: to give up work, give up study and go home and live for the time I had left. On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness – and to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time carer.
I quickly termed this Prescribed Disengagement™ and thankfully I eventually chose to ignore it. It seems extraordinary that one day I was studying a tertiary degree, working full-time, volunteering, raising two teenage boys and running a household with my husband and the next day, told to give up life as I knew it and to live for the time left.
Anyway, back to how others understand what we might mean of the written or spoken word, which has been brought to my attention by a dear friend alerting me to a book called Everyday Citizenshipand People with Dementia (2019).
In this book, members of the Scottish Dementia Working Group (SDWG) totally rejected my theory of Prescribed Disengagement, and were quoted as follows:
They reject what Swaffer (2015) calls ‘prescribed disengagement’ and instead advocate and campaign for the right of ‘continuing engagement’ within the world.(1)
Obviously I have failed to adequately define what I meant, and what happened to me – or – they failed to understand my theory.
I’ve always campaigned for support to allow continued engagement – not against – continued engagement – at the time of and after a persons dementia diagnosis.
Research beyond the one article quoted would almost certainly have helped clarify it, if they had looked. Unfortunately once something is published, it is very easily misquoted, or misunderstood without further research, and it is of course, impossible to edit somethng that has been formally published for exmaple in a book or journal, apart from an online source such as a blog.
It was also mildly concerning the editors didn’t pick up the misinterpretation either, something I’d expect academics and other professionals to do. I certainly hope I would have reached out to the author before publishing such a strong rejection, as from my experience I know just how long it takes to research for and to write a book.
As an author or editor, I believe we owe not only the reader, but those we quote that courtesy.
(1) Nedlund, Ann-Charlotte. Everyday Citizenship and People with Dementia, Dunedin Academic Press, , Chapter 3, p.4. Kindle Edition.