Guardian 2.8.08

[Sweet Pea]

Dear All

I read a very interesting article in the Guardian (Family supplement on Saturday

http://www.guardian.co.uk/lifeandstyle/2008/aug/02/oliver.james.dementia

It discusses 'Special Care' as an alternative to anti psychotic drugs

I hope the link works!

Best wishes

Sweet Pea

 

[Nebiroth]

Interesting but I find the statement that dementia only being loss of short-term memory a bit sweeping.

Loss of short-term memory would certainly not explain my father's agression, which seem to stem more from his gradual loss of old memories of social behavior.

Memory loss would not explain his paranoid obsessions with our neighbours, although a partial explanation could lie in the fact that he can;t remember what our house/garden wall looked like yesterday and thus cooks up explanations of evil neighbours who campaign to damage our property.

There is also the question of hallucinations, which is actually experiencing things that are not real (for example, giant spiders).

 

[Skye]

It shows that people with dementia suffer from only one major disability: they do not store new information properly so their short-term memory is defective. As Garner has been pointing out for nearly 20 years - and as brain scans now prove - much old information is still there

I agree, Nebiroth.

There is a lot in the article that I think most of us ould go along with -- trying to live in their world, not contradicting, avoiding repeatedly telling them that someone has died.

And I think we'd all agree that proper care is preferable to over-prescription of drugs.

But it is a gross oversimlpification to say that the only disability people with dementia have is the inability to store new information.

How would the writers explain the loss of ability to wash and dress, to control bladder and bowel function?

And not all aggression can be written off as a man picking up a knife because he used to be a baker, though it might have been true in that particular case. In some cases, proper care will never suffice.

I think the writers have made the mistake of generalising from a few particular cases.

 

[connie]

Words fail me...........

 

[DeborahBlythe]

Small correction

Dear All

I read a very interesting article in the Guardian (Family supplement on Saturday

http://www.guardian.co.uk/lifeandstyle/2008/aug/02/oliver.james.dementia

It discusses 'Special Care' as an alternative to anti psychotic drugs

I hope the link works!

Best wishes

Sweet Pea

Thanks for posting this Sweet Pea. I saw the Guardian article too and wondered what it was about and what TP-ers would think of it. The care approach is however called 'Specal', not 'Special'. I've lifted a quote below from the Specal website about a Specal book called Contented Dementia: hope moderators are happy with this. I assume that if the claims about the RCN and AS are true, there will be no problem.

"What Contented Dementia offers is solutions; methods, approved by the Royal College of Nursing and the Alzheimer's Society and pioneered by SPECAL (Specialised Early Care for Alzheimer's), that are the result of hands-on experience and which are, above all, practical and positive. So much of the information out there is weighed down with medical jargon that intimidates and is often deliberately obstructive and patronisingly dismissive, but this is an authentic self-help book, in the truest sense of the term, that can be used by anyone. It is approachable, user-friendly and tried and tested."

Does anyone know this book?

 

[sue38]

I think the article points to useful mechanisms for coping with some of the symptoms of early stage dementia, most of which anyone who reads TP will already be aware of.

I also agree with Nebiroth and Hazel that short term memory loss cannot explain why my Dad believes his home of 42 years is not his home and tries to leave, why he is unable to peform some of the functions (like cleaning his teeth) he has done for nearly 80 years...

But the biggest problem I have with the article is that it promotes, what is for me, the public misconception that dementia is only about memory loss. I get so frustrated when I tell people my Dad has dementia and they say 'ooh I think I've got that, I'm always forgetting things'. I want to scream 'DO YOU HAVE THE FAINTEST IDEA WHAT COPING WITH DEMENTIA IS LIKE???' but I bite my lip and try to explain calmly what some of the consequences can be.

Anyone who believes that coping with dementia can be made so easy just needs to read a few of the threads here on TP.

 

[Grannie G]

I love these `expert` opinions.

There may be truth in drawing some things from long term memory but where does the SPECAL system take account of the challenging behaviour of some dementia sufferers, their physical deterioration and loss of spatial awareness and cognitive skills.

Two prime examples of loss of long term skills which sufferers are loathe to relinquish are driving and management of finance. I wonder what work the study has done on this.

It is a very selective piece of work. IMHO>

And here we go again.
Quote Daily Telegraph 28/7/08
Having seen so many people enjoy their last years, despite dementia, Garner says she has lost her fear of it. "If I have to have a terminal condition, there is no doubt which one I would prefer, and it's dementia, provided SPECAL is involved. Properly managed, you can end up thinking all day about the things in your life that you most enjoyed - and you don't get bored."

Can`t wait.

 

[jenniferpa]

Oh for goodness sake (and frankly I'd rather use swear words). Can you believe it? It's back to the "away with the fairies attitude" of little old ladies sitting in their rocking chairs smiling benignly, rather that hitting and kicking and using language that would make a soldier blush.

 

[Skye]

And here we go again.
Quote Daily Telegraph 28/7/08
Having seen so many people enjoy their last years, despite dementia, Garner says she has lost her fear of it. "If I have to have a terminal condition, there is no doubt which one I would prefer, and it's dementia, provided SPECAL is involved. Properly managed, you can end up thinking all day about the things in your life that you most enjoyed - and you don't get bored."

Quite frankly, that's enough to make me use words that would make a soldier blush!!!!!

That's even worse than the Guardian article. Has Garner ever visited an EMI unit, or an assessment ward?

What patronising drivel!

 

[connie]

Quite agree Jennifer and Hazel.

Quite frankly, that's enough to make me use words that would make a soldier blush!!!!!

Did not want to upset anyone - that's why I said "words fail me"

 

[Margarita]

I found it rather interesting read.

A theory that has been put into practise with some people with a dementia & has work in such a positive way that the person does not need to be medicated with Ant psychotic drugs is a positive move forward in keeping some people with a dementia away from Ant psychotic drugs.

Sue I also agree with Nebiroth and Hazel that short term memory loss cannot explain why my Dad believes his home of 42 years is not his home and tries to leave,

Where did your father live 42 years ago before he moved where he is living now ?

The book of The Simplicity of dementia explains it in the way that the memory is like a diary so as the disease progresses it rolls back the years, just like that article was implying , but worded it differently.

 

[May]

Arggh!!!!!!!!

Nothing new in this, and it's nothing that we don't all do to facilitate communication with our loved ones. It doesn't explain (or perhaps prefers not to try, for fear of exploding the myths perpetuated in the book) why we all struggle with the incontinence, aggression, loss of cognitive skills etc.

Methinks we are looking at a well written advertisement for the journo's MIL here IMHO.

It shows that people with dementia suffer from only one major disability: they do not store new information properly so their short-term memory is defective

If I have to have a terminal condition, there is no doubt which one I would prefer, and it's dementia,

As Hazel said, patronising drivel and I think she has no idea what end stage dementia is like.This lady is living in 'cloud cuckoo land!

I'm with you Connie, printable words fail me!!!!!!

 

[jude1950]

I am so so grateful for the expert opinion of Ms Garner.

I only wish I knew of her technique earlier ....When Jim said that the man in the restuarant was a hired assasin that was going to kill him I should have called the police and had the man
arrested !**!!

Her assumptions and opinions are an insult to the legion of carers coping with this dreadful disease.

Judith

 

[Sweet Pea]

It appears that I have angered and offended some people...that was not my intention. I speak from experience of watching my Dear Dad who had AD (now sadly departed). He was at his happiest, and most contented when we didn't remind him about recent events, rather sat and listened as he struggled to recall events that had meant so much to him in the past. I have read here so many times that it is better to 'go with the flow'than constantly fight against it. That was all I was trying to say, and indeed agree with what 'more qualified' people have already said on this forum.
We were lucky, my Dad wasn't violent in any way, indeed he remained gentle and kind, and always found a smile for those he loved

Best wishes

Sweet Pea

 

[Grannie G]

Hello Sweet Pea

You haven`t angered anyone.

You have just highlighted some of the misconceptions and sweeping statements carers have to listen to from well meaning `experts`

Those of us with hands on experience know full well the benefits of positive interaction and understand how sufferers of dementia return to the past, where they were safe and secure. But we also know, to our cost, it fails to work consistently.

Please don`t think it is you who has caused anger.

 

[Skye]

It appears that I have angered and offended some people...that was not my intention.
Sweet Pea

Dear Sweet Pea, you certainly haven't angered or offended anyone. Far from it!

I should have thanked you for posting the article, it's good that we all have the opportunity to read what is written.

You were lucky with your dad, as I am lucky with my John -- he was never violent either.

But many other members are struggling with aggression, and in some cases it doesn't respond to kindness or one-to-one care. The article didn't make any mention of these cases.

And to say that dementia is just loss of short-term memory is completely wrong, there are so many different aspects, different in every sufferer.

That was all I was trying to say, and indeed agree with what 'more qualified' people have already said on this forum.

No-one is 'more qualified' than you on this forum, Sweet Pea, we are all just speaking from our own experience, and your experience with your dad is as valid and as interesting as anyone else's.

Please don't be offended. It truly was the article that upset so many of us, not you!

Love and hugs,

 

[fearful fiona]

I know this book..........

Dear All,

I work in a bookshop and the book came in the other day, so naturally it caught my eye.

I had a good look at it, but felt it didn't tell me anything I didn't already know. I think there are better books on dementia, and also feel that I get all I need from Alzheimer's Society and help from others on Talking Point.

 

[jenniferpa]

Can I third what Sylvia and Hazel have said? It was a very good link to post - in fact the basic principles which seem to be the books content are sound. However, it was the somewhat flippant (reported) comments from the author(s) which made us mad, not you Sweet Pea.

 

[Sweet Pea]

Thank you for your kind replies Sylvia, Hazel and Jennifer. I feel so much better now knowing that I haven't offended anyone

Sweet Pea

 

[twinone]

I wish she could have seen what happened to Steve those last few months. I would not wish it on anyone.(even her)

I think she would definately change her mind if she was a carer to a loved one with the disease.

What rubbish she talks, has she ever seen anyone in this stage I wonder.

Love
Janet