Representation of dementia

AlzSocUK DAW2016It has certainly been an interesting couple of weeks in England and Scotland, and on my last day here when we had planned to visit some dear friends south of London, we have both been too unwell so instead I have attempted to catch up on a few things like blogging, especially as I don’t think I have written nor posted even one blog since arriving!

The media has been very focused on dementia for this whole trip, as it had been Dementia Awareness Week in the UK just before we came, and was Dementia Awareness Week Scotland when we were there for the conference. Dementia has been ‘full on’ in the media here, and even if I didn’t live with it, I’d have had trouble getting away from the topic!  As always, what has been on in the media has made me think about representation of dementia in general, so I just googled for images of “representation of dementia”.

Google Images came up with a cross section of images of brains, some of them negative, many medical, and also many of brains that are impaired. Other images included people looking sad, or staff and care homes looking happy (as if they are places we would want to live). Some were of mind maps, events, and about the types of dementia there are, including infographics and quite a few on statistics and symptoms.

Not that long ago, my searches almost only came up with sad-looking old people, old hands being held by younger ones, or graphics of disappearing brains, so it has changed a lot, even on Google Images!  A couple of weeks ago, the Alzheimer’s Society UK produced a number of quotes about dementia, which I also found on my search, and the one featured here was used during their #DAW2016 activities, and it sounds like it was a quote from people, or a person actually living with dementia.

But onto representation of dementia, especially in the public domain. Most days I work at living in the denial bubble, and in particular ignoring that fact that I am struggling to speak, to think and often to function with even the simplest of tasks. I campaign globally for support to live beyond dementia, and for the discourse of suffering and tragedy to stop be the main messages promoted. However we continue to be bombarded with mostly negative narrative of living with dementia, with an almost complete focus on the losses and deficits. Even from many who publicly claim they are living well with dementia. This is especially devastating for the many newly diagnosed people who have received a diagnosis of a dementia, or those who have just started to become advocates and are starting to speak up publicly.

Yesterday in a meeting I heard that dementia is now the most feared disease for the over 40’s – I had previously heard that for the over 65 group, but was certainly concerned to hear yesterday it is now the most feared for people as young as 40. So if all we see and read about dementia is on the loss and devastation, on our grief and loss, our changed abilities, our loss of memories and capacity, and how hard it is for our ‘carer’s, then no wonder it is now the most feared disease. Like cancer, we all know the ‘horrors’ of dementia, and especially those of us living with it. Even though many living with it, and I would suggest virtually all until they are in the later stages and dying, have many good moments and good days, even many good years living quite well and beyond dementia. Many including me, even say it has been a gift, and that we have developed new creativity either because of dementia, or perhaps in spite of it.

Just for a change, could we please see something in the media celebrating the other side of dementia… I certainly hope it comes before I get onto a stage as a comedian!!! If we don’t, the many misperceptions and myths about dementia, the stigma, the discrimination and the isolation will almost certainly continue.

8 thoughts on “Representation of dementia

  1. “Just for a change, could we please see something in the media celebrating the other side of dementia…”

    I had many many positive posts on my blog until I was forced to remove them under threat of legal action from the person who is in control of the care of my care partner.

    I believe we are as much “the media” as anyone else. I believe every single individual out there is “the media,” and the more we do to live our lives as an example to others, the more we are using ourselves as media and as instruments to change the world.

    Keep up the good work Kate and thanks for catalyzing this list from which I will now create a post:

    15 links to the “other side” of dementia

    Naturally I will link back to you 😉

    XOX Susan

  2. As always, Kate, I am schooled by your open heart. This share is right on time for me as I finish creating a new website on dementia from a nurse’s perspective. Having also done those Google searches, I am at risk of violent illness if I see another shot of a beaming elder under the loving watchful eye of her equally beaming well groomed Caucasian carer. Ugh! Many thanks for your perspective; I will heed your words in choosing graphics and creating copy.

  3. Great post. Thanks Kate. I’ve been following your blog for a while now and even quoted you in my PhD on “prescribed disengagement”. I’m sitting in Heathrow waiting for a connecting flight to Stockholm to present a paper on disturbing what I term the ‘right kind’ of dementia story, in theatre and performance representations in particular, as these are my areas of research. I sometimes get nervous about presenting on the need for other kinds of stories about people living with dementia in the public domain, as over the past 8 years, when I have tried to engage people with the message that dementia stories also need to be about joy and even possibility, the reactions I get are often very negative. You have been a great inspiration to me over the years and reading your blog just now, before I present at the conference, has given me more confidence to talk about what I very much believe to be true.

  4. Kate

    If you are ever in this neck of the woods again, please consider a hop over to Northern Ireland to see the Arts & Disability Forum in Belfast.

    We are an empowerment based disabled-led company supporting disabled and deaf artists and audiences and developing new audiences for Disability/Deaf Arts. I enjoy reading your blogs and often share them online. I think our Art & Biscuits group would have loved to meet you.

    All the best, Chris

    Chris Ledger

  5. Kate I spoke about this at the ANZSGM last week. A young doctor announced it the most profound lesson (for him) of the whole conference. Things are changing, thankfully…

  6. What a great post Kate – this is just the message we all need so that anything written or spoken in the media or in any other place is more inclusive rather than exclusive of living well and beyond a diagnosis of dementia. The people who work in RACFs need to know about this as well as those organising and running community activities around the country and treat people with dementia with the respect and dignity they so greatly deserve. Until people with dementia are encouraged (as you were) to engage in enablement activities rather than child-like, mind numbing activities then the stigma, discrimination etc will continue.
    I hope to talk soon
    Elaine

  7. Kate, I lived beside dementia for my guess about 23 years before official diagnosis. For me it was hard to understand without that diagnosis, yet I can see that someone can lead a full life with dementia. I agree with one of your previous comments, that the diagnosis should not be treated as the opening of a door to an abyss. It is purely one step in a long process, and in our case 34 years. Knowing would have been better for me, and even being more aware that dementia can be a liveable situation with increasing “little help from friends”.
    Jeff

  8. We are living proof. We have been living it for 6 years. Yes its tough on us both. But I don’t think a day goes by that we don’t laugh. But I am a Cristian and believe we can get through this with positive thinking. If this part of our lives hadn’t happened.we would both be working our socks off.for what. We now get to spend nearly every day together.this has never happened. So the positive is we are making the best of our lives. And smiling most of the way. Xx 😊

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