Re-investing in life after a diagnosis of dementia

reinvestingFollowing 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.

30 thoughts on “Re-investing in life after a diagnosis of dementia

  1. Pingback: I Was Diagnosed With Dementia At 49 And It Was A Gift – Ny Med Times

  2. Pingback: A lazy blog! | Creating life with words: Inspiration, love and truth

  3. Pingback: Prescribed Disengagement | Hole Ousia

  4. Pingback: Follow the Yellow Brick Road…… | Cultivating Connections in Dementia

  5. Pingback: “Dementia friendly communities”: would a rose by any other name smell as sweet? | Living well with dementia

  6. Pingback: A proposed use of @theRSA’s “Steer” for a behavioural change for dementia friendly communities | Living well with dementia

  7. Pingback: In the shoes of … | Ken Howard, living with younger onset dementia | Whose Shoes?

  8. Pingback: Kate Swaffer’s “Prescribed Disengagement”, “the sick role” and living with dementia | Living well with dementia

  9. 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…..

  10. Pingback: People not body parts | Pippa Kelly ...

  11. 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

  12. 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!

  13. 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

    • 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

  14. ……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……

    • 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 😉

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s