Caregiver’s Negative Agreement & Stigmatization of Those With Dementia


I’d like to quote from this in my PhD if you allow me to Faith?

Originally posted on Still Life With Dementia:

When I was diagnosed with dementia, I asked what that meant for my future. Unlike Kate Swaffer’s, Prescribed Disengagement, my questions were met with compassionate solemn looks…but no answers. Like everything else in my life, it was left up to me to figure it out…and to figure out what to do with it. Although, it makes things a bit harder to not be given guidance, I find as I get some distance, that I really prefer things that way because it allows me complete freedom to form my own view of it.

I didn’t relish being put in the situation of having to confront my beloved medical providers with the hard and uncomfortable question of, “just be honest with me, does this mean I am going to die?” Or to have to make them utter the words, it was clear they wished I hadn’t asked them to say, “yes…

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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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