Malignant Positioning vs Living Well with Dementia

Malignant positioning can occur when, after a diagnosis of dementia, a person’s words and behaviour are put down to symptoms of the condition, rather than being recognised as a genuine reaction to a situation. People may talk over and for people with dementia and take over doing things they can still do for themselves.

If carers assume that people with dementia cannot work, socialise or live without curbs and limitations, they banish them to a world of helplessness and hopelessness.

Shakespeare understood this so well: In Richard II, when the King banishes Thomas Mowbray, he wails:

A heavy sentence, my most sovereign liege,
And all unlook’d for from your highness’ mouth:
A dearer merit, not so deep a maim
As to be cast forth in the common air,
Have I deserved at your highness’ hands.
The language I have learn’d these forty years,
My native English, now I must forego:
And now my tongue’s use is to me no more
Than an unstringed viol or a harp,
Or like a cunning instrument cased up,
Or, being open, put into his hands
That knows no touch to tune the harmony:
Within my mouth you have engaol’d my tongue,
Doubly portcullis’d with my teeth and lips;
And dull unfeeling barren ignorance
Is made my gaoler to attend on me.
I am too old to fawn upon a nurse,

Too far in years to be a pupil now:
What is thy sentence then but speechless death,
Which robs my tongue from breathing native breath?”

For Thomas Mowbray, being banished to a foreign country was like losing his voice. If we are not careful, when we speak for a person with dementia or assume that they are talking nonsense, we take away an essential way of expressing themselves.

A TED speaker coach shares 11 tips for right before you go on stage

Originally posted on TED Blog:

Gina Barnett advises a speaker during TED2014. Below, her best last-minute public speaking tips. Photo: Ryan Lash/TED Gina Barnett advises a speaker during TED2014. Below, her best last-minute public speaking tips. Photo: Ryan Lash/TED

The weekend before a TED conference, each speaker rehearses their talk in the TED theater. It’s a chance for the speakers to get to know the space, for our curators to give last-minute suggestions on talk content, and for our speaker coaches to give advice to help each speaker feel their absolute best the day of their talk. During this time, we overheard speaker coaches Gina Barnett, Michael Weitz and Abigail Tenenbaum give a few extraordinarily helpful tips that we’d never heard before.

We asked Gina Barnett, longtime TED speaker coach and author of the upcoming book Play the Part: Master Body Signals to Connect and Communicate for Business Success (to be released in June), to share some specifics:

  1. Start drinking water 15 minutes before you start talking. If you tend to get…

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VE Day letter from the Netherlands

R.N. Party 1132
c/o GPO, Reading

Monday, 7/5/45

Dear love,
Please note my new address; it’s likely to stay like that for a couple of months.
Bonny weather we’re having today: fresh, and yet hot that I’ll be shedding my pullover in an hour or so. It feels like summer coming, and though we’ll probably still have plenty of patches of rain, I don’t think we’ll have any more cold. (I don’t write about the weather to fill up space; the weather interests us very much, because our work is all in the open. Besides, I like to think of you and Bumph sitting in the sun.)
I wonder if there have been many rejoicings, (I mean public rejoicings) at home over the victory here, of if they’re saving them up for VE day (Why VE?). I was out in the town last night, and it was full of (brave) crowds of youngsters, young lads and girls, marching up and marching down, but making remarkably little noise for so many. The good old British soldiers looked on, but took no special part. The town was gay with flags, celluloid balls, and odds and ends of Christmas tree decorations — and of course, this is their VE day, for the civilians at least, have forgotten all about the war in the East.
Oh, what do you think, Katie? Do you remember Edward Vaughan of Wellesley days? Well, he’s here as a cypher officer, after serving three years at sea as a coder. It’s very nice to meet him again, for he’s an awfully pleasant fellow. We had a grand old talk yesterday about our first nine weeks in the Navy.
Don’t know when I’ll get your letters now! They’re probably still going to R.N.N.P 3004, and the Mail Officer there will be sending them on to RNP 1501, who’ll be sending them on — we hope — here. Isn’t it a blessing that you don’t dodge about from place to place too!!
As you may have guessed, that leave — this month is out of the question now. But another couple of months might see us back, so there’s a chance of a summer leave at least. Go on getting brown and fat, Katie — warm summer nights with no blackout — lovely!
This is one of those in-between-times where there would be lots to write about if one were allowed to, and as a consequence I don’t seem to have anything else to talk about. So I’ll stop and come back in another letter.
All my love to my lass —

Feedback on living well with dementia


This is important

Originally posted on Creating life with words: Inspiration, love and truth:

Slide1The feedback from the Insight program from many people was overall very positive, but some “were deflated by it, saying it totally bypassed the realities of people with moderate-advanced dementia”, and one family support person said it “showed dementia through rose-tinted glasses”I’m adding a few snippets of feedback here, without people’s names for their privacy.

I would like to say in response to the two comments above, that most programs about dementia, completely bypass the reality that many of us are (and can) living much better with dementia, than the public perception, which is almost always ‘late to end stage’ in the media.

Unless diagnosed very late in the disease process, none of us go to end stage upon diagnosis.
It must have been difficult for the team at SBS Insight to turn 2.5 hours of filming into a 50 minute program, but I feel it was reasonably well-balanced. I…

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Foucault and Dementia

Why did you choose Foucault as a lens?

I chose Foucault as a lens because he addresses the psycho-social and political aspects of illness and medicine. As each generation manages to deal with different threats of illness, both medical advances and political attitudes focus on the next threat to the population. Currently the world is trying to make sense of the threat both socially and economically that dementia presents. Until recently people with dementia were separated and corralled in care homes, cut off from family and society, left to die. In the same way in the past, lepers, the indigent and the insane met similar fates. The rise of the medical model of treatment is not much use for people with dementia as there are limited treatments and no cure. So it is important that people with dementia are accepted by and encouraged to take part in society as best they can. It is a challenge for civilians and politicians to consider their own values: are human beings with a cognitive disability allowed to have a full life?

In particular: the Panopticon where prisoners are kept stable by the threat of an unseen but all seeing guard resembles some arrangements in care homes. Records of care and daily lives are available for family to read. Care Homes are inspected. If a person with dementia is living at home, an official will visit the client and the carer before any help is given. There are different models of care dependent on how much money the client has.

People with dementia are restricted as to what kind of work or social life they are “allowed” to have. They lose their autonomy, needing a carer with them in order to take part in society.

Dementia has yet to benefit from the “medical gaze”. Actual firm diagnosis can only be given after death when the brain is examined, but people with dementia are subjected to a barrage of tests prior to diagnosis. After diagnosis, people with dementia are encouraged only to go home and tidy up loose ends before they die.

Political will is mainly focused on cure and on the cost to society of dementia. Dementia friends create a them and us situation and to think someone can watch a video for fifteen minutes and be considered a Dementia Friend is ridiculously superficial.

Just as in the past, indigents were separated from society, people with dementia are largely separated from society because its situation is too complex for their safety. I fear this will change only slowly: look at how many public spaces and domestic housing still need to be adapted for wheelchair users for example.

I asked at my local branch of the Bank of Scotland if they had had dementia training: “No, oh, well, I think there are some leaflets in the back office…”

It is all very well to make public servants such as bus drivers aware of dementia, but how does a bus driver deal with both an angry queue and a passenger with dementia? The same may go for supermarket cash desks. Perhaps we will see Dementia friendly signs over one of the supermarket cash desks along with “cash only” “hand baskets only” signs.

Many people are doing sterling work towards a better society for people with dementia and they need support of all kinds if people with dementia are to live the lives they could live.


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