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Terry Pratchett – Living With Alzheimer's

Helen33

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Jul 20, 2008
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Glad you found us in the end.
Dear Said, so am I:) I think in time the message that the AZ Soc deal with all forms of dementia will get across. I think it should be clearly stated by each professional when dealing with someone with a dementia other than Alzheimers - that seems simple enough to me;)

Dear Sandy, I can see what the AZ intended to do but I don't think it is clear at all. Subtle is no good really. It would have come across to me that Alzheimers Soc. is leading the fights against dementia (meaning Alzheimers = dementia). It would have been more effective to have worded it

LEADING THE FIGHT AGAINST ALL FORMS OF DEMENTIA This statement is significantly different.

I do appreciate your responses and I cannot imagine my life now without the AZ Soc. You all do a wonderful job.

Love
 

sue-ree

Registered User
Aug 23, 2008
17
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Wales
Hi All,

I think it must be difficult when someone is diagnosed with a different form of dementia to link that back to support from the Alzheimer's Society. I suppose that is part of educating health professionals and other support workers to give out information about sources of support. Perhaps the new memory clinic plan will make that easier.

I also just wanted to point out that the Society has tried to tackle this gap by adding the tag line to their logo:

Leading the fight against
dementia


It's subtle, but it does try to get the message across.

Take care,

Sandy

I just Googled 'Frontotemporal Dementia help' and the very first hit is the Alzheimer's.org with a fact sheet. I think that if you can Google it, you can usually find something out about everything! So it doesn't look that difficult to link the support back to the Alzheimer's Society, you people are doing a marvellous job and I feel so much better for having found you, Big Thanks!:)
 

Meldrew

Registered User
Apr 28, 2003
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London
PCA is a completely different form of dementia, just as John's PPA is. John could not speak so articulately, or write novels, but he could complete the drawings -- and tie his tie!

OK, what's in a name? Well, call me nitpicking ;), but I do think it's important to differentiate if we're to get the message across to the general public.

Hello
Posterior cortical atrophy (PCA) is a progressive degenerative condition involving the loss and dysfunction of brain cells particularly at the back (posterior) of the brain. In the vast majority of cases, this loss of brain cells is associated with the same pathological brain changes seen in typical Alzheimer’s disease, namely amyloid plaques and neurofibrillary tangles. In other words, posterior cortical atrophy is most usually considered to be an unusual or atypical variant of Alzheimer’s disease. PCA is also occasionally referred to as Benson’s syndrome.

If we want to be really really pedantic, Alzheimer's disease is not a dementia in itself but is a cause of dementia - the plaques and tangles in the brain cause a series of symptoms which we associate with dementia. The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. These include Alzheimer's disease and stroke. Strictly speaking we ought to refer to dementia caused by vascular disease or by Lewy bodies rather them being dementias in there own right. In the end, how we label a condition doesn't really matter that much - as long as we're all clear what we're talking about and we demonstrate compassion and care for those of us who are affected directly or indirectly.
 

sue-ree

Registered User
Aug 23, 2008
17
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Wales
Meldrew makes sense!

Hello

In the end, how we label a condition doesn't really matter that much - as long as we're all clear what we're talking about and we demonstrate compassion and care for those of us who are affected directly or indirectly.
You have the exact point. 'Cancer' is still 'Cancer', only it affects different parts of the body.'Alzheimer's', 'Dementia' it's all still affecting the brain. The outside cover is still the same, it's just the book inside that tells a slightly different story! so read up!
 

Helen33

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Jul 20, 2008
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Hello Meldrew

Thank you for that information Meldrew. I found the second paragraph very helpful for my own understanding.

Best wishes
 

Skye

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Aug 29, 2006
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SW Scotland
Hello

The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. These include Alzheimer's disease and stroke.

That's exactly my point, Meldrew. PCA is a specific form (or cause, if you prefer) of dementia. It is not the same as Alzheimer's, though in later stages symptoms of Alzheimer's do present.

Strictly speaking we ought to refer to dementia caused by vascular disease or by Lewy bodies rather them being dementias in there own right.

In fact we do this. Lewy Body dementia and vascular dementia are usually differentiated.

There are several diseases and conditions that cause dementia. These include:

Alzheimer's disease − The most common cause of dementia. During the course of the disease the chemistry and structure of the brain changes, leading to the death of brain cells (see Factsheet 401, What is Alzheimer's disease?).
Vascular disease − The brain relies on a network of vessels to bring it oxygen-bearing blood. If the oxygen supply to the brain fails, brain cells are likely to die and this can cause the symptoms of vascular dementia. These symptoms can occur either suddenly, following a stroke, or over time through a series of small strokes (see Factsheet 402, What is vascular dementia?).
Dementia with Lewy bodies − This form of dementia gets its name from tiny spherical structures that develop inside nerve cells. Their presence in the brain leads to the degeneration of brain tissue. Memory, concentration and language skills are affected. This form of dementia shares some characteristics with Parkinson's disease (see Factsheet 403, What is dementia with Lewy bodies?).
Fronto-temporal dementia (including Pick's disease) − In fronto-temporal dementia, damage is usually focused in the front part of the brain. At first, personality and behaviour are more affected than memory (see Factsheet 404, What is fronto-temporal dementia, including Pick's disease?).
Rarer causes of dementia
There are many other rarer diseases that cause dementia, including progressive supranuclear palsy, Korsakoff's syndrome, Binswanger's disease, HIV and AIDS, and Creutzfeldt-Jakob disease (CJD) (see Factsheets 438, What is Korsakoff's syndrome?, 446, What is HIV-related cognitive impairment? and 427, What is Crutzfeldt-Jakob disease?). People with multiple sclerosis, motor neurone disease, Parkinson's disease and Huntington's disease may also be more likely to develop dementia.

AS factsheet http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200131&documentID=106
 

Tender Face

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Mar 14, 2006
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NW England
Well, having slept on it I am still a bit 'Hmmmmmm' about it ... I am really not sure about last night's programme and I am pleased in a strange way to come back to this thread and see other people have raised points already which troubled me as I practically 'forced' myself to sit through last night's programme after the first 10 minutes .....

Questions which puzzle me:

1) Why did his wife and daughter refuse to have anything to do with the filming?
2) Has Terry given permission for his 'story' to be followed through when he is no longer in a position to agree to being filmed? (However many years hence).

Perhaps the answer to (2) might have a direct bearing on (1) ...... ?

Perhaps next week's programme will create very different thoughts and reactions ...... ?

I am left nearly 24 hours later with a feeling of 'what was all that about and what was it meant to achieve?' Was it meant to be educational or entertaining? Both or neither?

A very confused, Karen (who will of course be watching next week :rolleyes:)
 

Margarita

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Feb 17, 2006
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london
My wife, aged 55, has PCA and is probably about 4 years ahead of Terry Pratchett. The consultant has told us that, although it starts at the back of the brain, it ends up affecting the brain in much the same way as the more “normal” forms of Alzheimer’s/dementia

Thank you for clearing that up .

That's exactly my point, Meldrew. PCA is a specific form (or cause, if you prefer) of dementia. It is not the same as Alzheimer's, though in later stages symptoms of Alzheimer's do present.

in later stages symptoms of Alzheimer's do present.

yes that what I always thought .

So really Alzheimer's is an umbrella team , then under that umbrella come all forms of Dementia.


I find this link make it very clear .
http://www.mayoclinic.com/health/alzheimers-disease-and-dementia/AZ00053.

The term dementia refers to a set of symptoms, not the disease itself. These symptoms might include language difficulty, loss of recent memory or poor judgment. In other words, when an individual is said to have dementia they are exhibiting certain symptoms. With a thorough screening including blood tests (to rule out other causes of dementia such as vitamin deficiency), a mental status evaluation, neuropsychological testing, and sometimes a brain scan, doctors can accurately diagnose the cause of the dementia symptoms in 90 percent of the cases. (It is true however, that Alzheimer's can be diagnosed with complete accuracy only after death, using a microscopic examination of brain tissue, which checks for plaques and tangles).

Although Alzheimer's disease accounts for 60-70 percent of cases of dementia, other disorders that cause dementia include: Vascular dementia, Parkinson's disease, dementia with Lewy Bodies and Frontotemporal dementia.

In the early stages of a disease, there can be some clear differences between the diseases. For example, in dementia with Lewy Bodies (the second most common cause of dementia) early symptoms of the disease may not be so much forgetfulness, but lowered attention span, recurrent visual hallucinations, and a fluctuation between periods of lucidity (or clear thinking) followed by periods of confusion. However, as the specific disease advances, more parts of the brain become affected, and the differences from one cause of dementia to another are subtle.

I hope, however, that the next programme will show what the moderate and severe forms are like and the challenges and fears that the carers and sufferers face. We have to prepare for the future

I hope not, because I have that reality to much in my face at home with my mother am sure the generally public no how horrific it is , because when I tell people mum got AZ all they know about is the horrific in pack in has on the person and the carer , all they know is about is the ending .
So I feel terry program has a good balance in talking about neurological disorders , showing the brain in 3D, so hopefully also taking the stigma away .
 
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JPG1

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Jul 16, 2008
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Margarita,

Could it be the other way round: that Dementia is the umbrella, and under the cover of that umbrella sit many forms of dementia, one of which is Alzheimer's?

The Terry Pratchett programme is still disturbing me, but I will watch it again.

At the moment, I can only say that it bothered me. In the same week that the National Dementia Strategy is revealed for us all to see and to read and to digest, there is a programme about one very rare form of dementia, in one very-high-profile individual. And my initial feeling is that the programme will have done little to introduce to the viewing public the devastating effects of most dementias. The rapidly devastating effects, not the long-term slowly-developing effects. But for those who have gone from 'start' to 'finish' in a mere couple of years, then I am still wondering about the usefulness of this particular programme having been transmitted in this particular week.

I will watch the programme again before commenting on it.
 

Margarita

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Feb 17, 2006
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london
Could it be the other way round: that Dementia is the umbrella, and under the cover of that umbrella sit many forms of dementia, one of which is Alzheimer's?

But then Alzheimer's is not a dementia.
The term dementia refers to a set of symptoms, not the disease itself.

Vascular dementia, Parkinson's disease, dementia with Lewy Bodies and Frontotemporal dementia.

That what I thought when I read up on it .

Alzheimer's is not a symptom like Parkinson's is not a symptom. They are both a disease of the brain.

 
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TinaT

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Sep 27, 2006
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Bolton
I watched part of the programme. As I was in a hotel bedroom with my son and I wondered if that was the reason I hadn't watched it all the way through. On reflection I think that my problem in watching it was twofold, both of which points have already been made I see when I read back over previous posts.

1) Terry was obviously very interested in helping the 'cause' and all praise to him for allowing cameras and suchlike enormous intrusion into his private life, especially at a time when he was trying to come to terms with the fact that he has a devastating illness. It was such a brave and demanding thing for him to allow.

I know from experience the self absorbing nature of the illness. It was good to air to the general public the insidious creeping effects of the illness and the impact this was having on Terry's life. I also wanted to see what effect this had on those around him. His illness was shown too much in 'isolation'. We all on TP know that it isn't only the effects which the illness has on the person themselves, it is the wider effects it has on the family, friendships and social life which can often be so hard and difficult to deal with.


2) I second all the posts about the use of the blanket term 'Alzheimers'. It has been mentioned that there are many different forms of Cancer. Well, There are many forms of Dementia and Alzheimers is one form of Dementia. The general public has only become aware of the many differing forms of Cancer because of publicity associated with each specific type. For example, even if we have no personal knowledge of breast cancer, we are well aware it exists and is different than bone cancer, testicular cancer etc., etc.

I would like to see more publicity to explore the differing forms of Dementia - not always using the term Alzheimers as a 'one word covers all types'. I sincerely believe we need more publicity about the various types of dementia and to help the public to dispel the myth that all dementia's have the same causes, the same symptoms and the same rates of decline. We here on TP know - once you have seen one dementia sufferer - you have seen one dementia sufferer. Let's try to educate the public a little more into the various forms.


All this sounds carping and small and as I say I am full of admiration for one very brave man who is striving to do just the very thing I wish for - to give publicity and education to the general public.
xxTinaT
 

Skye

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Aug 29, 2006
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SW Scotland
Could it be the other way round: that Dementia is the umbrella, and under the cover of that umbrella sit many forms of dementia, one of which is Alzheimer's?

But then Alzheimer's is not a dementia.


No, dementia is the umbrella, Margarita.

Alzheimer's is the most common form of dementia, around 52% as far as i remember, can't find the pie chart off hand.
 

JPG1

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Jul 16, 2008
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The Umbrella Of Dementia

Dementia = symptoms that occur when the brain is affected by specific diseases and conditions.

These include Alzheimer’s disease, which is the most common cause of dementia.

Therefore Alzheimer’s disease is a form of dementia.

Alzheimer’s disease = a form of dementia.

Vascular disease = another form of dementia.

Dementia with Lewy bodies = another form of dementia.

Fronto-temporal dementia = another form of dementia.

PCA, the Terry Pratchett form = another form of dementia.

They are all forms of dementia. All diseases causing dementia.

So the Umbrella is dementia, and under that umbrella sit many forms of dementia.
 

Margarita

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Feb 17, 2006
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london
Where did you find all that out ?





But for those who have gone from 'start' to 'finish' in a mere couple of years, then I am still wondering about the usefulness of this particular programme having been transmitted in this particular week.

If you notice in the program they did say that Terry family did not want to be involved in the filming.

But for those who have gone from 'start' to 'finish' in a mere couple of years,

So when terry gets to that part , near the end of his life . I wonder if the family will permit it to be viewed . even if its sooner rather the later, in a couple of years

Terry seem he wants his life to be viewed along his Journey, but I wonder if the family will when he has no clarity of thought .

Take a lot of courage for someone to give permission to view on TV " Start to finish " .
 
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Margarita

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Feb 17, 2006
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london
So why does it say this ?


What is dementia?

The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions, including Alzheimer's disease, stroke and many other rarer conditions. Symptoms of dementia include loss of memory, confusion and problems with speech and understanding.



The term 'dementia' is used to describe the symptoms
 

Helen33

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Jul 20, 2008
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Take a lot of courage for someone to give permission to view on TV " Start to finish " .

The way I'm feeling at the moment, I think it would take more courage for his wife and/or daughter to be viewed. I would not want anyone to see me tonight. I could just SCREAM AND SCREAM.
My husband hasn't a clue because of the disease. I now realise that the story needs to be more holistic. It's not about an individual. Right at this moment I think I would rather be the one with the disease - yes I do realise this is a terrible thing to say but right at this minute I think it would be easier:(:eek:
 

JPG1

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Jul 16, 2008
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Ok, Margarita: a question to you now:

What are the symptoms of Alzheimer's?

The symptoms of Alzheimer's are: ...
 

Margarita

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Feb 17, 2006
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london
No, dementia is the umbrella, Margarita.

Alzheimer's is the most common form of dementia, around 52% as far as i remember, can't find the pie chart off hand



Ok Just trying to get grasp this


Dementia is the progressive decline in cognitive function, so is defining a set of symptoms due to organic dysfunction. So Alzheimer's disease is the most common form of dementia .

seeing it the most common form of dementia , I can't see what the issue is with Alzheimer being class the top of the umbrella?
 

Skye

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Aug 29, 2006
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The issue is, Terry Pratchett has PCA, which is a form of dementia.

He does not have Alzheimer's, which is a different form of dementia.
 

JPG1

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Jul 16, 2008
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Skye,

Or, alternatively, is PCA a variant of Alzheimer's?

Variant = a different form of, but in essence very very similar, or even very much the same in effect?

I don't know, but I am trying to work it out as I move forward along the path of understanding dementia.

Pratchett calls it Alzheimer's. So perhaps we should ask Pratchett and his Consultants why he calls it Alzheimer's.