Prescribed Dis-engagement

Prescribed Dis-engagement: what is it?

Following diagnosis, my specialists all told me ‘to give up work, give up study, and go home for the time I had left’! I quickly termed this prescribed disengagement, and thankfully I eventually chose to ignore it. Why is it that one day I was studying a double degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give up work, and give up life as I knew it, and start ‘living’? This prescribed dis-engagement sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.

I had to give up paid employment after having my driver’s license revoked, but continued to study. Studying means I need to use a lot of strategies to be productive, helps me stay focused away from illness, and increases my neuroplasticity and resilience. Thankfully, at university, I am still viewed as a whole person, in the same way as someone who is sight impaired or in a wheel chair.

Prescribed Dis-engagement: what’s the cost?

I believe it sets PWD to become victims or sufferers, and their partners to eventually start behaving like martyrs, and to take over for the PWD. It sets us up to believe there is NO HOPE, no strategies to fight the symptoms of dementia, and that it’s not worthwhile trying to find some. It impacts our self esteem, our finances, our relationships, and our ability to see a future. Having dementia does not mean you have to give up doing crazy and fun things, or blogging, or living beyond your diagnosis. For some, following a diagnosis of dementia, their whole life become about dementia and many seem to forget to keep living the other parts of their lives. This is surely the negative side effect of the prescribed disengagement.

A recent article about Dementia Friendly Communities written by Alzheimer’s Society of Ireland is about dementia friendly communities, which is something I have had a dream about for Australia since March this year. It links in with my belief people with dementia must stay engaged in their pre-diagnosis lives for as long as possible, and for younger people, to remain employed for as long as possible, requesting assistance in the same way as a person who has been disabled by other illnesses or an accident. It might help to remove the discrimination, stigma and isolation, and will help others see that people with dementia are still very capable of contributing positively.


14 thoughts on “Prescribed Dis-engagement

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  7. For those of us who have the opportunity to support people to stay engaged in ways important to them, what questions should we be asking of the person and others in their life? It could be, “How have you found meaning in the past?”, “What have your achievements been and what do they mean to you?”, “Where are the places where you feel most stimulated, most peaceful, most liberated?”, “Who are the people you trust, who offer fun, who offer consolation, who offer challenge, who offer debate, who offer gentleness?”. Kate, what do you think?

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  8. Your determination to fight on despite so-called expert advice from doctors and others is a profound lesson for all of us. My god you’ve got guts and brains aplenty and the wisdom to focus on the things that matter and that can make a difference.

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  9. never ever disengage, only those that have never stepped in your shoes can really know you, even then I often wonder what would they do if it were them, their wives or a loved one. We have all worked with surgeons who should have been given the shoulder tap YEARS before they left, I remember asking a senior Dr once why they didn’t ask them to leave and his response was, then someone would ask me…. What is good for the goose good for the gander, I was not surprised by this comment. Thankfully you didn’t do these things for I fear the fight would not be as relevant as it is now. love you keep going

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    • Sadly, staying engaged means some accuse me (mostly behind my back) of lying about the diagnosis, even PWD… but I’d much rather ignore them and treat them with the contempt they deserve than give up and fall into a heap!

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