The Simplicity of Dementia
eBook - ePub

The Simplicity of Dementia

A Guide for Family and Carers

  1. 176 pages
  2. English
  3. ePUB (mobile friendly)
  4. Available on iOS & Android
eBook - ePub

The Simplicity of Dementia

A Guide for Family and Carers

About this book

This book offers an accessible and sympathetic introduction for relatives, carers and professionals looking after or training to work with people with dementia.

Drawing on the two `laws of dementia', the author explains the causes of communication problems, mood disturbances and `deviant' behaviours, with particular emphasis on how these are experienced by dementia sufferers themselves. Case examples demonstrate the typical symptoms and progression of dementia, and clear guidance is provided on how to support dementia sufferers at every stage and help them deal with the challenges posed by their condition.

Relatives and carers will find this book a source of essential information and encouragement to deal confidently with the difficulties posed by the condition both for people with dementia and those around them.

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Information

Print ISBN
9781849857451
eBook ISBN
9781846420962
1
What is dementia?
Introduction
Her fingers, so wrinkled, the colour of marble, rearrange the advertisement folders lying on the low table.
ā€˜What a shame that Pa has just left. It would have been so nice... I don’t know where he is, I haven’t seen him all day!’
She looks at me with an uncertain expression on her face, grey-blue eyes that look but do not see.
ā€˜Pa is making a cup of tea, Mum,’ I say as I rest my hand on hers. ā€˜Really? Why didn’t he say something then? I haven’t seen anything of him at all.’
ā€˜Oh, Pa, there you are – that’s good.’
She is clearly very pleased to see him. Pa puts the tray with the cups, tea and sugar on the side table. He looks tired.
ā€˜Here you are dear, here’s the tea,’ he says.
She strokes his knee.
ā€˜I’m always so pleased when he’s back,’ she says almost apologetically, and then proceeds to put sugar in all the cups.
(Van den Berg 1995)
The term ā€˜dementia’ comes from the Latin and literally means ā€˜mind gone’: the first syllable ā€˜de’ meaning ā€˜gone’, and ā€˜mens’ being the Latin word for ā€˜mind’. The person concerned goes into a steady decline, and the progress of the disease is so destructive that in the last phase the patient bears hardly any resemblance to the person he or she was at the outset. During the (long) first phase, the dementia, as such, is scarcely apparent; the eyes are bright and open, the mind is clear and the patient walks and moves around as he has always done. In the final phase of the disorder, however, he becomes dependent on others for all his needs, and he has forgotten everything he has ever learned. A person with severe dementia comes to the end of his life just as he entered it – a helpless baby. At that stage, he is only receptive to the atmosphere around him, and to the satisfaction of his most primary human needs.
It was thought for a long time that people with dementia were ā€˜mad’ and suffering from some kind of mental illness. It has become apparent only fairly recently, however, that this is a misconception, and that dementia is caused by brain dysfunction. The nerve cells in the brain are diseased. In the case of Alzheimer’s disease, the nerve cells shrink or wither away – in a kind of ā€˜autumn of the mind’. The brain’s control room is not able to function as it should. In the early phase of the disease, sufferers are able to behave fairly normally, because most of the nerve cells are still in good working order. The brain also has amazing reserves at its disposal: when nerve cells fail, others take over their tasks, either partly or in whole, and can continue to do so for a very long time...at least until a critical point has been reached, and there are no more ā€˜reserve players waiting on the bench’. The more it affects more parts of the brain, the more striking the changes in the patient’s behaviour.
Strictly speaking, a full diagnosis is only possible once a post-mortem examination has been carried out. So long as the patient is still alive, there is no reliable method of determining the nature and degree of the brain tissue damage. Dementia, therefore, is always a ā€˜probable’ diagnosis. And sometimes, even the most experienced pathologists are puzzled by the fact that some people who have apparently functioned quite normally for their entire lives are found, during autopsy, to have the same brain abnormality as that found in people with dementia. This means that, even after death, it is not possible in all cases to diagnose Alzheimer’s disease with 100 per cent certainty.
The disease begins gradually: silent, like an animal stalking its night-time prey, it takes hold of its victim, and worsens with time.
Dementia in many forms
There are many types of dementia, and dementia – like cancer, rheumatism and respiratory disorders – is a collective term. The most common form of the illness is Alzheimer’s disease, which is named after the German neurologist Alois Alzheimer, who first described it in 1906.
The first conversation Alois Alzheimer had with Auguste D., the ā€˜first’ Alzheimer patient, began as follows:
ā€˜What is your name?’
ā€˜Auguste.’
ā€˜Your surname?’
ā€˜Auguste.’
ā€˜What is your husband’s name?’
ā€˜Auguste, I think.’
ā€˜Your husband?’
ā€˜Ah, my husband.’
She looks at me as if she has not quite understood the question.
ā€˜Are you married?’
ā€˜To Auguste.’
ā€˜Mrs D.?’
ā€˜Yes, Auguste D.’
ā€˜How long have you been married?’
She is obviously trying hard to remember.
ā€˜Three weeks.’
Of all people suffering from dementia, roughly 55 per cent have Alzheimer’s in its purest form. After Alzheimer’s, vascular dementia is the most common and is responsible for 15 per cent of all dementia cases. There are other forms of vascular dementia, the most well-known being the so-called multi- infarct dementia (MID). As the name suggests, this dementia arises from the many (in Latin: multi) small brain infarcts that cause oxygen loss in various parts of the brain which, in its turn, results in brain tissue erosion.
In roughly 15 per cent of cases, we see a combination of two or more disorders which lead ultimately to dementia. The combination of Alzheimer’s and vascular dementia occurs most frequently. If we add ā€˜pure Alzheimer dementia’ to the 15 per cent mentioned above, it means that roughly 70 per cent of all dementia patients suffer from Alzheimer’s disease.
A long line of relatively rare disorders is responsible for the remaining 15 per cent. These diseases, including Parkinson’s disease Pick’s disease, Binswanger disease, Lewy Body disease and Huntington’s disease, occur – relatively speaking – more often in younger patients. The same is true of Aids which, in its last phase, can also cause dementia.
Dementia is a syndrome; that is, a group of symptoms or features which appear in combination. Memory loss is always the essence of the illness, and it means in practice that the patient’s life pattern undergoes considerable change. As we have said already, there are many types of dementia. Each syndrome has its own cause, or causes, and each has its own process. We will limit ourselves in this chapter to a description of the two most common forms of dementia: Alzheimer’s disease and MID.
Both diseases share many similarities, in terms of their symptoms and consequences. There are, however, several important differences. Whilst Alzheimer develops very slowly, MID often begins suddenly with a period of confusion, which is probably the consequence of a mild stroke. This is followed by a period of reasonable recovery, the patient’s condition remaining fairly stable until the onset of the next ā€˜confusion’ period. Whilst Alzheimer progresses in a way which can be compared to walking down a slight slope, MID is more reminiscent of small steps on a descending track – two steps down, and one upward step back, and so on.
Because MID is caused by the erosion of many small brain particles, whereby the surrounding area is still able to function reasonably well, these patients are often far longer aware of their own deterioration than Alzheimer patients. When someone with Alzheimer’s disease makes a mistake of some kind, and this is pointed out to him, his response is often one of genuine surprise. The recent past is a black hole for him, whilst a similar incident might ring a few more bells for an MID patient, who realizes quite quickly, or remembers vaguely, what he should have known. MID patients are likely to be more conscious of the effects of their illness for a longer period of time.
A male MID patient describes his experiences in these terms:
I used to be able to do everything. And now I can’t do anything. That’s what’s so crazy about all this. Everything works against me. If I had my way...I would walk through that wall, get into the car, and go to see my wife. But I can’t. If I could, I would have done it already! And that’s what gets me down. I can’t stand it. I cannot cope without my wife. And here I am [in the nursing home]. That’s all I know. I don’t understand it. Everything is confused. I don’t know what’s going on any more. And I can’t remember how it was in the past. There is so much I would like to know...and I know nothing, that’s the whole problem. The fact of the matter is: I can’t remember anything. There is nothing I can do about it, but what I know this morning, I will know this afternoon...I don’t know any more. That is horrible. They say to me: ā€˜go and get ten kilos of potatoes’ – and a moment later, I’m saying to myself: what was it I was supposed to get? And then I’ve lost it. I used to know exactly what I had to do, but now I don’t.
My brother-in-law was here a while ago. I think to myself:’hey, that’s Gerard’. I was happy to see him, of course, because we grew up and played together. He says: ā€˜You ought to be able to remember that, Henk.’ I say: ā€˜Yes, I ought to, but I can’t, Gerard.’
I’m not doing anyone any harm, and no one is harming me, but I lose track of things immediately. How can I get rid of this illness? – because in my eyes it is an illness.
But enough of this self-pity. That’s no good. I will keep on fighting. I’ll just eat a plum, and then at least I’ll have something to nibble on in my mouth.
(Quoted in Van Delft 1993)
The fact that people with dementia are spectators of their own decline over a longer period of time often results in their developing depression.
Whenever the term ā€˜dementia’ is used, it usually refers not so much to MID but to Alzheimer’s disease. Unless otherwise stated, therefore, the same will be true of the rest of this book.
Prevalence
Dementia is often referred to as the ā€˜disease of old age’, although the disorder is occasionally known to occur in people under the age of 65 years. Between the ages of 45 and 54, however, only 0.025 per cent of the population suffers from dementia. The incidence figure is st...

Table of contents

  1. Cover
  2. Title
  3. Copyright
  4. Contents
  5. Preface
  6. 1.Ā Ā What is dementia
  7. 2.Ā Ā The simple logic behind dementia
  8. 3.Ā Ā The experience of dementia
  9. 4.Ā Ā Communication
  10. 5.Ā Ā Mood problems:Aggression, depressiveness and suspiciousness
  11. 6.Ā Ā Behaviour problems:Clinging behaviour, wandering and nocturnal restlessness
  12. 7.Ā Ā Management guidelines and activities
  13. 8.Ā Ā The family:The hidden victims
  14. 9.Ā Ā Feelings of guilt
  15. References

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