Following a diagnosis of dementia, most people are told to go home, give up work, in my case, give up study, and put all the planning in place for their demise such as their wills.
Their families and partners are also told they will have to give up work soon to become full time ‘carers’. Considering residential care facilities is also suggested.
All of this advice is well-meaning, but based on a lack of education, and myths about how people can live with dementia. This sets us all up to live a life without hope or any sense of a future, and destroys our sense of future well being; it can mean even the person with dementia behaves like a victim, and many times their care partner as a martyr.
Many of you know I have labelled this “Prescribed Disengagement”, and it is clear from the numbers of people with dementia who are standing up and speaking out as advocates that there is still a good life to live even after a diagnosis of dementia.
My suggestion to everyone who has been diagnosed with dementia and who has done what the doctors have prescribed, is to ignore their advice, and re-invest in life.
I’m not talking about money, but about living well and continuing to live you pre-diagnosis life for as long as possible. Sure, get your wills and other end of life issues sorted out because dementia is a terminal illness, but there is no need not to fight to slow down the deterioration.
There is no other illness I know of where the medical and health care providers tell you to give up. To me, this is a ridiculous and negative prescription… It is time all people with dementia and their families stood up for better advice and services that enhance well being.
Alzheimer’s Disease International have a Charter that says “I can live well with dementia”, and this is not a joke, it can be done. They are serious about, and I am serious about it.
The new group Dementia Alliance International is serious about it. The Scottish Dementia Working Group is serious about it. The European Dementia Working Group is serious about it. The Alzheimer’s Australia Dementia Advisory Committee is also serious about. People with dementia make up the membership of these groups.
We are all working together to support the voices of people with dementia, and to improve our own lives, and the lives of everyone around the world living with dementia.
Pingback: Holiday season
Pingback: Supporting a person with anxiety
Pingback: Why awareness of dementia isn’t enough
Pingback: to Neurologists and other Specialists | Truthful Loving Kindness
Hello Kate. Tru here. Will be including this Link in my next blog entry. THANKS.
LikeLike
Thanks Tru 🙏🙏
LikeLiked by 1 person
Pingback: I Was Diagnosed With Dementia At 49 And It Was A Gift – Ny Med Times
Pingback: A lazy blog! | Creating life with words: Inspiration, love and truth
Pingback: Prescribed Disengagement | Hole Ousia
Thank you for sharing my work dear Peter, for being my friend and but most of all, for being the wonderful person that you are. xox
LikeLike
Pingback: Follow the Yellow Brick Road…… | Cultivating Connections in Dementia
Pingback: “Dementia friendly communities”: would a rose by any other name smell as sweet? | Living well with dementia
Pingback: A proposed use of @theRSA’s “Steer” for a behavioural change for dementia friendly communities | Living well with dementia
Pingback: In the shoes of … | Ken Howard, living with younger onset dementia | Whose Shoes?
Pingback: Kate Swaffer’s “Prescribed Disengagement”, “the sick role” and living with dementia | Living well with dementia
Hi Kate – Great Blog, I agree with most of what you say, the difficulty for many is that there is help and support out there and a desire to live life to the full – some barriers do remain however, such as a GP who prevents access to this support but refusing to diagnose…..
LikeLike
Hi Gary… sadly, what you say is so true! Many people are working hard in Australia at how to to better educate GP’s in dementia. Take care…
LikeLike
Medical practioners need to take heed from people like you, you are the people that are making a stance and improving quality of life for people with dementia.
LikeLike
We are working on it Raylene Thanks for your support here though, it means a lot xx
LikeLike
Pingback: People not body parts | Pippa Kelly ...
hi kate you are a fabulous inspirational lady. Your positivity is so refreshing. I am a mental health nurse about to start up a post diagnostic group in the day hospital i work in. I want to make the eight week course informative and and very positive. People who are told early that they have dementia can remain at a plateau where they can live well and have fun. If you have anything you would like me to include in this course let me know. I feel so much more upbeat after reading your article. keep the thoughts coming.
Kind Regards
Mary Mc arthur
LikeLike
Hi Mary, Thanks for your kind words, and good luck with your course. I’d love to contribute if I can, and will connect via email. Cheers… Kate
LikeLike
Well written Kate, we need more of your thoughts, as they really do make a difference to people with dementia. Keep up the good work
LikeLike
Thanks Ken, it is wonderful to have you join the conversation here. Take care, and let’s hope we meet some day soon too!
LikeLike
Bravo Kate, absolutely… Such a lovely post you’ve written and this will be well received by readers I’m sure. Would you mind if I share it on the YoungOnsetDementiaSupportGroup page because this philosophy is exactly what I seek to encourage. A lovely read!
LikeLike
Thanks Denise… and of course you can share it there.
LikeLike
I would imagine half the battle in facing Dementia is staying activated and keeping the mind challenged and activated rather than giving up and letting it go to mush. You have obviously done this well Kate and I truly believe your dedication to the blog has kept your mind fired up and growing not going still and dying as they would have you believe. Keep going girl. You are giving Dementia a whole new meaning…As we are learning, our health and our mind included, are capable of healing if our attitudes and outlook on life remain positive…You have certainly done that……Hugs to you and much admiration…..VK
LikeLike
Half the battle with anything we are facing is standing up and fighting for yourself, taking the time to face the challenges, accept them and improve your lot… anything… losing weight, recovering from a death or divorce… terminal diseases or chronic illness. It is what we ‘do’ with it that really counts! Love and hugs to you my friend… xox
LikeLike
……yes, I even paid for my funeral……..and here I am today still alive, confident and happy, always the eternal optimist……..and I think I will ask for a refund, because I still have a long way to go……no doubt God is looking after me……
LikeLike
Dear Tony… that is almost funny… I did virtually everything towards organising my funeral, as requested by family, except pay… and like you, am here still. Thankfully, by the way!!! At least I don’t need a refund 😉
LikeLike
It is also very important to continue doing activities which stimulate the brain and enhance sequencing; such as word puzzles and many cognitive word games that you can do on an iPad.
LikeLike
I totally agree, but to suggest stopping one’s pre diagnosis life, and switching to things like that is, from my perspective, ridiculous. They can definitely help, but should not be what one exchanges ‘living’ for. IMHO…
LikeLike
Oh, of course, I meant it just as a therapy.
LikeLike
Yes, I realised that… but so many don’t. Thanks for your support 🙂
LikeLike
Thank you so very for this article! I definitely agree and appreciate you writing it!
LikeLike
Wonderful… please also consider spreading the word! Thanks.
LikeLike