Living beyond the diagnosis of dementia     

One of the myths of dementia is that people diagnosed with it can’t live well after the diagnosis, and the concept of maintaining a pre diagnosis life is not possible.

However, ADI’s Global Charter states: I can live well with dementia.

But the problem with that, is nobody, no organisations, no service providers, no doctors, no researchers, no clinicians, are yet telling us how to do that. T

hey still direct us down the pathway of Prescribe Disengagement™, and man simply do not believe it is even remotely possible to “live well with dementia”.

Living well with dementia is a ‘tricky’ term, and there has been a global conversation, by people with a diagnosis of dementia, about whether it is in fact, not only about whether it is, or is not possible, but if it is even appropriate to use the term, living well with dementia.

Chris Roberts from Wales and I have said many times it is more about living better with dementia, and what I (and I think Chris) meant by that, was living better than the public perception of what others believe is living with dementia. Chris even influenced the title of Dr Shibley Rahmans latest book to Living Better with Dementia. Mostly, the public perception is that it is not possible to live well and we are ‘suffering’, all of the time.

Living better could simply suggest that the way I am living well or better, implies I am living better than someone else. This is not the case either, and is also not what I mean. Living well, or living better, is too reliant on what you, or others think that means, and can too easily used comparatively, which is unhelpful and could even be hurtful.

Perhaps though, this kind of debate, or discourse, is not necessarily helpful either.

The reality and data clearly tells us many more people are living in their own homes in the community, than in residential aged care. What we see is the public image in the media of people whose lives are devastated by the ‘suffering’ of dementia, but there is so much more to our lives.

In between the sadness and the deterioration of symptoms, many people with dementia continue to live reasonably well, in spite of dementia. With any terminal disease or chronic illness, there are bad days, but not every single day is always like that.

In this excerpt from my first book about dementia, What the hell happened to my brain, to be released late 2015 or early 2016, and which is already available for pre-ordering on Amazon.uk, I wrote this;

Subsequent to my being diagnosed with younger onset dementia 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. I was also told 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 family carer. 

Very quickly I termed this Prescribed Disengagement™, and thankfully I eventually chose to ignore it. Because Prescribed Disengagement™’ is a term I came up with, I was advised to trademark it before someone else did, and hence have done so.

It seems extraordinary that one day I was studying a tertiary degree, working full-time, volunteering, raising two teenage boys and running a household, doing the shopping and gardening, living a very busy and full life with my husband and the next day, told to give up life as I knew it and to live for the time left.

All of this advice was well-meaning, but it is based on a lack of education and preconceived expectations and myths about how people can or as it seems is clear, misperceptions that we can’t live well with dementia. This sets people with dementia up to live a life without hope, without any sense of a future and destroys the notion of well-being.

This Prescribed Disengagement™ sets up a chain reaction of hopelessness and fear which negatively impacts a person’s ability to be positive, resilient and proactive, ultimately affecting their well-being and quality of life.

Without hope, it is a wonder anyone of us bother to make an effort to live well.

After the diagnosis, when you are feeling like the darkest dark WILL put out the brightest candle, then being told to go home, get acquainted with aged care and get your end of life affairs in order, can only make you and everyone around you, believe there is NO hope.

Prescribed Disengagement™, lowers a person’s own expectations about how they can live well, and it lowers others’ expectation about how we can function and live, including employers, doctors, health care professionals, service providers, our families and friends, and the community.

For example, if I had experienced a stroke, I would have been authentically rehabilitated and supported to return to work, in whatever capacity possible, with reasonable adjustments if required.

For people with younger onset dementia, this is extremely important and potentially could keep us living better lives for much longer, including continued employment. It has the potential to completely disable us emotionally, leading us to learned helplessness.

Living well at any time of our life is probably what everyone wants, but add in the diagnosis if dementia, and the Prescribed Disengagement™, and many of us think we can no longer live well, so we might as well die now, in the sense that many just give up fighting for their lives. Although it requires a lot of hard work to supporting ourselves with non-pharmacological interventions, and on remaining positive, and meaningfully engaged is not a cure, ‘fighting for our lives’ in any way we can think of, does improve our quality of life and perceived well being.

Living beyond the diagnosis of dementia is perhaps the right term, and the key to improving the lived experience.

There is a growing body of research to support this, and as we are, in reality, perhaps further away from a cure than we thought we were 10 years ago, it is imperative we strive to better than expected of someone with dementia, for as long as possible.

I call it the Olympics of my life, and although I am terrified of the day when I am no longer independently functional, for now, it has increased my sense of well being, and my Ability to function in spite of, and alongside, the symptoms of dementia and the disAbilities it has given me..

I believe it is important I make every effort to live beyond the diagnosis, and say to myself every single day;

Why die upon diagnosis, when I wouldn’t have given up [told to fight for my life] with any other terminal or chronic progressive disease?

33 thoughts on “Living beyond the diagnosis of dementia     

  1. Pingback: Living well, living better, or living beyond dementia? | Creating life with words: Inspiration, love and truth

  2. Well done on all your achievements, a book is yet another string to your bow, I am talking weekly with my Father In law about his vascular dementia – yet to be fully diagnosed (if this is an appropriate term) I keep pushing his family wife, 2 sons to stop telling him what he can’t do and keep letting him do what he wants. Try first, fail but don’t give in and die later I tell him. We now have a bond that I never thought we would have, his biggest loss has been losing his license something I can do nothing about. I thank you for teaching me about “Prescribed Disengagement”(TM) it’s something I won’t let happen to those around me who do get diagnosed. xxx

    • My dear friend… it is wonderful to have your support, and I am so glad my blog and experiences seem to have aided in some small way your time with your father in law. Love you forever xoxox

  3. Hi Kate,

    I am currently taking up the Understanding Dementia course of the University of Tasmania. One of the videos led me to this site. I appreciate your insights about living with dementia. Prescribed Disengagement does sound depressing. I agree that one should be as meaningfully engaged as possible despite the daunting challenges. I wish you the best on the Olympics of your life. Looking forward to read your upcoming book,

    Patricia

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  8. Hello Kate!
    I admire your work. I’ll share some of your thoughts on 25. Alzheimer Europe Conference in my country Slovenia, Ljubljana. Can I?
    Jože Škrlj

    • Hello Jože, please do share them in Slovenia. I really wish I was able to get to this conference, but for such a short trip, it is too costly, and too far to get to from Australia! The temptation to move to the UK or Europe continues to call…

  9. Hello Kate, I’ve been following your thoughts for a long time now and this post really has made me stop and think. I’ve been developing a tech solution, which I hope will make a difference to people living with younger onset dementia in particular (I’m posting here as me personally and not the company). I say I aim to help people ‘live well’ because, up until now, that has encapsulated the ambition of helping people to continue to live as the person they’ve always been as long as possible. I’m now going to think about whether there’s a better way of expressing this, so thank you!

    • Thanks for sharing Mary… I loo forward to reading about your tech solution too, please do share it with me if appropriate. I could even organise focus groups of people with dementia for you to test your ideas or the actual tech ‘solution’ out on if that is helpful?

  10. What more could a primary care giver in the U K need than to open his P C in the morning and read such an articulate analysis of the shortcoming of the current approach to dementia. Thanks Kate I have reblogged and will do my best to spread the gospel here.

  11. Reblogged this on memory issues and commented:
    Once again my first post of the day is copied across from Kate Swaffer’s Blog. What an excellent start to the day for someone to outline the shortcoming of the approach to dementia so clearly.

  12. Amen and A(wo)men! Here is a testament to living beyond the diagnosis and if any “disengagement” took place, we controlled it! I think I mentioned previously that when we got the diagnosis for Gregory we had a choice: “Lie down and die or hunker down and keep going.” We hunkered down and in some ways lived BETTER than we did before the diagnosis.

    We ate well, cooked well, traveled to Europe and Mexico, subscribed to more theaters than ever before, continued going to the Opera, entertained, ate out, bought a new condo and furnished it, sold the old place, eventually closed Gregory’s firm so we could have more time doing the things we loved to do and while he loved his architecture firm he loved not having to deal with clients more!

    People invited us in, we invited them in, Gregory worked with me as we opened Michael’s Museum: A Curious Collection of Tiny Treasures at the Chicago Children’s Museum on Navy Pier in Chicago (www.michaelsmuseum.org)

    Yes we had to regroup and revamp but we never considered stopping. We were able to be at the top of our game for 10+ years when the Dementia/Alzheimer’s began winning out but even then we compensated, we loved, we enjoyed each other and our life!

    To this day Gregory and I enjoy each day and I try to make his life as full as possible; even though he can no longer has language, has great cognitive difficulties, physically is challenged, and lives

    Yes, as the disease progressed, we again had to regroup and revamp but we never considered stopping. We were able to be at the top of our game for 10+ years when the Dementia/Alzheimer’s began winning out but even then we compensated, we loved, we enjoyed each other and our life!

    To this day Gregory and I enjoy each day even though he can no longer has language, has great cognitive difficulties, physically is challenged, and lives at a near by memory care facility where he is safe, content, happy, and well taken care of. I visit every day and our time is always quality time.

    Our love for each other has continued and continues to grow stronger and stronger. We have never been “quitters” and never will be. We just look at our alternatives and make better or the best of them!

  13. Hi Kate! I cannot agree with you enough here – and I sing your praises and share your blog and other writings with as many of my colleagues as I can. If we don’t listen to the voice of those living with dementia – then what on earth are we doing working in the field???? ❤

    • Exactly Sarah.
      My current ‘band wagon’ is on conferences, where more often than not, people with dementia are not invited speakers, until someone like me asks WHY NOT??? Adding us as keynote speakers, after the media release of the ‘other’ key note speakers, and as an afterthought, is not only insulting, it shows passive stigma towards us, and is discriminatory.
      Great to have YOU on our team.

      ps happy birthday xx

  14. Thank you for your reply Kate. I agree with you and intend to live a full life beyond the diagnosis of dementia. I am still in work and intend (hopefully) to stay fully employed for a few years yet.
    😀

  15. Hi Kate,
    My name is Phil Price I live in the UK and I was recently diagnosed with Early Onset Alzheimer’s Disease, I’m 57. I couldn’t agree more with all that you have written above regarding living well/ better with dementia especially the ‘expectations’ of health care professionals within what you so eloquently term ‘Prescribed Disengagement ‘ – thank you.

    • Thanks for joining the conversation here Phil… sorry to hear you have Younger Onset Dementia, but whatever you do or decide not to do, do fight for your life! It is worth it, and there is far too much anecdotal evidence now to prove we are on the right track. Like all anecdotal evidence, eventually, it more often becomes evidence based as well… Take care.

      ps the term for under 65 years of age, is more often now referred to as Younger onset, not early onset, as anyone, at any age, can be in the ‘early’ stages of dementia.

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