Dementia care is still way off balance #DAM2015 Day 24

Image source: googleimages.com

Image source: googleimages.com

It is, obviously, still World Alzheimer’s Month 2015, so for Day 24 #DAM2015, and also making my life a little easier this week, I have found another article I wanted to re-blog, written and published on World Alzheimer’s Day this week by a colleague who I have not yet had the pleasure to meet in the UK, Damien Murphy, and posted on twitter where I first saw it.

Now that people without dementia are starting to learn the lessons and speak up for us as well, I believe we will actually start to see change. I have in fact, written about these things many times before, so Damien is really just agreeing with me, and supporting the other point of view.

The surprising thing is that if I had written and published this article, it is likely I would have been bullied offline again, as so often, it is the family care partners who object so strongly to the voice of people with dementia who dare to speak up for themselves. Thanks for your support Damien!

One sided or Lob sided – Dementia care is still way off balance.

From over 15 years of time spent observing families and couples interact; from what people with dementia have told me about their needs and questions, feelings and fears around the time of diagnosis; and more recently from the excellent eloquent testimonies of the likes of Kate Swaffer and Wendy Mitchell in their daily blogs, I have become increasingly concerned about the overwhelmingly carer-focussed approach in many areas of the field of dementia care.

The predominantly care-for-carer approach has prevailed for many years. The Alzheimer’s Society was founded as a carers’ organisation in 1979 and Carers UK has a strong national voice, incorporating Crossroads care now. This support is of course absolutely necessary, but it must not be at the expense of the voice and support of the person with dementia. I am often told in social situations when talking about what I do that ‘it must be worse for the carer’. I always try to point out that it is difficult for both parties in different ways and they cannot be compared. Although there are many examples of the voice of people with dementia getting a greater profile (the Dementia Engagement and Empowerment Project – DEEP – being an excellent example) they are still in their infancy and there still remains an uneven playing field where predominantly only one side of the care-giving relationship is heard.

Read the full post here…

10 thoughts on “Dementia care is still way off balance #DAM2015 Day 24

    • My pleasure… it is great that people without dementia are starting to see it for what is it, instead of just my husband and I banging on about it! And none of us write about it to criticise, simply to improve everyone’s experience of dementia, whether it is the lived experience, or that of our care partners, which we all know is done with LOVE.

  1. Hi Kate, I found the blog so very interesting. Have you read the book Contented Dementia by Oliver James? He writes about Penny Garners experience in helping her mother, who had dementia to have a contented life post diagnosis. As a result of the SPECAL method of communication that Penny developed many people with dementia and their loved ones are able to live in a much more fulfilling and stress free way.

    • Thanks Jane, yes I have read that book though don’t recall much of it. These days, I read very few books by ‘carers’ as prefer to read the authentic voices of people with dementia about our collective and individual experiences, for me, that is far more helpful. Though it sounds like more carers need to read it…

  2. Thanks Kate for sharing this post: Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer’s) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.
    Seeing Demien’s suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I “did” to Gregory with or without realizing. It also showed me those things I was careful NOT to “do to” him.

    While my first thought was “it was done with love” (which made me feel better) and my next thought was “it is only human nature” (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved.

    • Sadly, no-one is coached on this, but rather, but instead we are told to go home, get ready for death and aged care… hopefully can can change that unethical pathway and give both the person with dementia and our care partners some sense of hope!

  3. Those without a voice, without a Carer, are quietly forgotten, being institutionalised prematurely, at great cost to Government. They are excluded from the “dementia” conversation because they do not have an advocate.

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

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