Looking the other way

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.

10 thoughts on “Looking the other way

  1. I find the above quote incredible when I hear it came from Scottish DWG. A clear misinterpretation of your meaning. It’s so disheartening for us all when people refuse to hear. To misquote a famous saying, “There’s none so deafw as those who will not hear.” Nevertheless, if we battle on as an international team, I believe we can make things better for those to follow us.
    Thanks for all you do Kate, and mostly for being you x

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    • I did too, but as Jacki said, maybe I have misinterpreted them… I’m tring to connect about it, although have tried a number of times before now too. My friend who alerted me to it initially (from Scotland) did tell me they had rejected my theory, and was more than surprised by it. love you dear Julie xx

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  2. As someone who hasn’t had any family experience of dementia, I still find it startling that people are met with such barriers following a diagnosis. You are absolutely right Kate in looking at this as a ‘prescription’. And yet, research clearly shows that disengaging people from their lives exacerbates all manner of health problems. So why do we still do it? Hope you’re keeping well.

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  3. Kate – I am wondering (without knowing the context)- if they are not rejecting your theory – but rather endorsing it. And wanting to fight against the fact that it (prescribed disengagement) is happening. So rejecting that this forced disengagement caused by the current system is a good way to do things (rather than rejecting that it exists)? This might be another interpretation.
    Not sure if I am making any sense – I am all wordsed out!

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      • I hope it is the case! I have to say that I haven’t ever heard from anyone (person living with dementia, family carer or health professional) from whom it doesn’t resonate with – so a rejection that it occurs would really surprise me.

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      • I asked the person who alerted me to the comment in the book, who believes the interpretation he initially said, which after reading it is also mine, was correct. I will however keep trying to determine for sure

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  4. Ohh Kate, it is not you! People just don’t want to hear what you so eloquently have to say. Or they can’t hear it. And there is a difference between can’t and don’t want! Until one has been through what you (or I) have been through and until a person is a good person who cares more for others than their own success and/or pockets, not much will change. Keep shouting your message, so many people have heard what you have to say (me for one) and they do make a difference. Who knows if how PWD are treated will change in our lifetime; or how we care for the infirm, or the elderly, or the handicapped. When will financial greed, political power greed, and all selfishness change and regard for human life take priority with individudals, communities, groups, religions, governments? Maybe never, but those lives and the lives of the people they love, who you have touched, who have heard your message loud and clear, say THANK YOU! Be sure to hear that! Keep up the valiant fight.

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    • Thank you dearest Michael… it was curious that a group of dementia advocates misinterpreted it so much and worse that the editors either didn’t understand my theory, or missed the error. Onwards and upwards with love as ever xxxx

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