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BLOG - Kate Swaffer, Dementia care is still way off balance
Posted: Sunday, November 1, 2015 5:48 AM
Joined: 7/24/2015
Posts: 3020

I realize that there is a benefit of participating in numerous groups with others with dementia, and following a number of blogs as well.  Sometimes this gives a wider perspective on what people with Alzheimer's and dementia are thinking, feeling, and going through.  There are surprisingly few of us here in this forum, compared to other social media, and that can give a rather limited view of things.  I thought to share some blog posts so others can see and share in what others are experiencing of life with this disease. I hope you consider following their blogs.


Dementia care is still way off balance

Kate Swaffer / September 24, 2015  

"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.

Posted on September 21, 2015 by elhijodeveronica

"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.

Historically, then, the stress and burden model has prevailed and has always made me feel extremely uncomfortable as it can, however unwittingly, imply blame on the person with dementia as the cause of this stress. Kate Swaffer has written widely on the phenomenon she has termed ‘prescribed disengagement’™. She explains how the overwhelming message she received from her doctors (the prescription) was to give up work, go home and withdraw (disengage). She almost did it too like so many other people living with dementia who are constantly fed this line that they are a burden.

My concern is that many dementia services (often well-intentioned) only serve to reinforce the blame-laden stress and burden model.

In this article I want to focus on the presentation of what are often referred to as ‘challenging behaviours or behaviours that challenge’ in advice leaflets, the public media, and in many courses either on-line or face to face. They are frequently presented like a warning. Carers are warned about certain ‘behaviours’ to watch out for. These behaviours mentioned are usually framed under the medically camouflaged ‘BPSD’ or Behavioural and Psychological Symptoms of Dementia. Am I the only person who finds this deeply worrying? A classic lead into diagnostic overshadowing – an extremely convenient ‘get out’ from seeking to truly understand what more often than not are understandable reactions to highly stressful situations that many people with dementia face every day. ‘What do you expect? They have dementia.’

So these frequently termed ‘challenging behaviours’ are often presented as a warning to carers but ask yourselves, as I have, to what extent are people with dementia warned about the possible challenging behaviours of those around them? Currently never, and that’s just not fair.

Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.

They might answer the question you’re about to answer

They might talk over you

They might point out your mistakes

They might correct you

They might talk about to others when you’re there.

They might speak too quickly for you

They might interrupt you in full flow

They might dismiss what you say as untrue or false.

They may patronise you.

They may frequently undermine you

They may expose you to failure just to show others they’re right.

They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.

They may control you

They may disempower you.

They may blame you for your dementia

They may tell you off

They may treat you as ‘full blown’ from the moment of diagnosis.

They may hide things from you.

They may contradict you

They may try to rip you off or deceive you

They may ignore you.

They may take away your independence.

They will frequently test you

They may exclude you

They may shout scream or cry

They may humiliate you or make you feel a burden, when offloading about how stressed they are."