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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.
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http://kateswaffer.com/2015/09/24/dementia-care-is-still-way-off-balance-dam2015-day-24/
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!"
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One sided or Lob sided – Dementia care is still way
off balance.
Posted on September 21,
2015 by elhijodeveronica
https://dementiafriendly.wordpress.com/2015/09/21/one-sided-or-lob-sided-dementia-care-is-still-way-off-balance/
"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."
READ THE FULL ARTICLE
HERE: https://dementiafriendly.wordpress.com/2015/09/21/one-sided-or-lob-sided-dementia-care-is-still-way-off-balance/
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