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Once a person’s dementia has progressed beyond a certain stage, the duration of life becomes less important than its quality. Most people, be they family carers or professional advisers, would not wish to preserve at all costs an existence that might be a burden to the sufferer. A discussion between the family and the doctors will usually result in a joint decision about the most appropriate form of treatment and when this should be withheld. In some circumstances treatment may need to be fairly active, but in others it may consist merely in ensuring that the person with dementia does not suffer pain, distress, or thirst. It is the doctors’ and nurses’ job to try to help people die with dignity and with the least suffering possible.

Sometimes, a demented person’s illness, a pneumonia for example, may look certain to end in his or her death and it will be decided not to treat the infection, but rather to pay attention to alleviating distress and suffering. After a few days, however, it may become apparent that despite not being treated with antibiotics, the patient is rallying and the pneumonia receding. Under these circumstances many doctors will elect to institute treatment with antibiotics to speed up the recovery, rather than allow it to take place over a prolonged period of time resulting eventually in a greater degree of dependence and a lessened quality of life than would otherwise have been the case. The point at which to intervene with antibiotics in such cases is often difficult to determine and it is not possible to lay down ground rules. Each situation has to be considered on its own merits.

Few, if any, people die of dementia, the majority succumbing to intercurrent infections such as pneumonia. Sometimes, however, other factors contribute to a patient’s death, for example malnutrition and a failure to drink. The body in general will deteriorate, sometimes slowly, sometimes not so slowly, until the sufferer dies. The exact mechanism of this is often uncertain as it can appear to occur without a specific intercurrent illness.

When a person with dementia does die, it is possible that the doctors may ask whether you would be prepared to give permission for a post-mortem examination of the brain. Many relatives find this a difficult decision to make, often because they haven’t been given the opportunity to think about it in advance. The only definite way of making a diagnosis of the condition that has caused the dementia is to examine the brain after death. It is extremely helpful to doctors to have their suspicions about the diagnosis confirmed, or the reverse. Knowledge gained in this way may well help them in the management of their future patients.

We also need to know a lot more about the changes that occur in the brain in people who have dementia and much of the research can only be undertaken on brain tissue donated at a post-mortem examination. The new approaches to treatment and the increased understanding that we have recently gained have nearly all been based upon the results of research carried out using post-mortem material. There is no reason why a postmortem examination should significantly delay the arrangements for a funeral and it will not cause any further suffering to the deceased. The examination is undertaken in a very discreet manner and there is usually little, if any, evidence that it has taken place.

In many cases it is very likely that if the deceased sufferer had appreciated in earlier life what sort of illness he or she was going to develop, he or she would have given permission in advance for a post-mortem examination, in the hope that it might contribute knowledge that might help doctors and medical scientists to treat others.

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You will often feel angry and at times perhaps even violent. Many a carer has also actually attacked physically the person they are looking after. This is a natural reaction and we all have our own tolerance level. Your anger will be very mixed – it will be directed at the sufferer, directed at yourself for having reacted in the way that you have, and directed at the general situation that has allowed these circumstances to prevail. You may be angry with the doctors for not being able to cure the dementia, with others for not providing adequate services, with the government for not making better care available, and so on.

When this situation arises – and if it hasn’t it almost certainly will — try to remember that the behaviour that has provoked it is not aimed at you as an individual, but is a response engendered within the sufferer by his or her illness. However personal an attack it may appear to be, it is merely a symptom of the sufferer’s illness.

If you arrive at the point of only just being able to stop yourself being physically aggressive or have actually been unable to prevent yourself responding in this way, you need help and support. It is not something to be ashamed of, it is not something to lock up inside yourself; it is a warning to everybody that you need help. To whom you turn will depend very much on your own circumstances. Other members of the family may be able to help relieve the strain, either by taking over for a while or by acting as an emotional outlet. A friend in a similar position to yourself, perhaps met through a support group, may also be able to help. You ought, anyway, to visit your doctor as he may be able to mobilize professional support that will sustain you in the longer term. Please try not to feel ashamed and guilty; this reaction is normal and everybody has their breaking-point. Once you have discovered yours, you should try to plan ahead. In some ways your task may be easier for knowing where you stand. Also, remember that whatever you have done, the sufferer will almost certainly forget, unless it is a repeated and frequent occurrence.

Paradoxically, like so many other situations in life, it is the apparently trivial situations that cause the greatest problems. For this reason you may not feel like sharing your problem with others, but it is important that you overcome this reluctance. If you can also manage to distinguish between your anger at the sufferer’s behaviour and your anger with the person himself or herself, this may make your burden easier to bear.

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The doctors in a general practice employ many different staff, especially if they are part of a large busy partnership. Most people will meet one of the receptionists before they meet their doctor. Some receptionists are better than others, but all should take patients’ and relatives’ problems seriously and treat them with consideration however harassed they may themselves be feeling. They should never be allowed to make diagnoses and they should never fob patients off. Anything they are told should be treated as confidential; strictly speaking, there is no reason at all why they should know anything about the problem that has led to the request for a consultation with the doctor.

Of the other medical staff, older people with dementia are most likely to meet the health visitor or the district nurse. The latter is particularly responsible for helping to provide nursing care to sufferers in their own home and this will be more important later on in the course of a dementing illness. In many areas, district nurses are supported by auxiliary nurses who help with jobs like washing and bathing. The district nurse is trained to appreciate the needs, physical and emotional, of patients and their relatives, to provide appropriate care, and to summon up other members of the community health team when required. She will also keep the doctors informed about the physical condition of her patients.

The health visitor is someone who has trained and practised as a nurse and often also as a midwife. She receives additional training, especially in prevention of illnesses. In the past health visitors have tended to concentrate on young people and children but with the increasing numbers of older people they are beginning to play an important role with this age group too. She will be able to give advice and mobilize extra resources if they are needed. Unfortunately health visitors are in short supply.

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As described earlier, dementia involves a progressive decline of intellectual ability. A declining memory alone is inadequate evidence upon which to make the diagnosis. In addition to the difficulty with remembering things there is usually a progressive loss of the ability to think and to reason that can also affect other areas of mental functioning, for example emotion and behaviour. Most people, even the very old, do not become demented.

The simplest of the medical definitions of dementia is ‘a global loss of intellectual function that is usually progressive and in the majority but not all cases untreatable’. The most important word in this definition is the term ‘global’, as this reinforces the fact that memory loss alone is not the same as dementia, and that there have to be other aspects of abnormal mental functioning.

It has already been mentioned that hardening of the arteries by itself does not cause dementia, but there are also other misconceptions that need to be corrected. It is not caused by under-use or over-use of the brain, and it affects people in all walks of life. With the exception of one or two very rare conditions it is not infectious — one person cannot transmit it to another. It is also not an inevitable consequence of ageing. Although it may sometimes appear to be precipitated by a stressful event, the most common example of this being the family who attribute the onset of dementia in one ageing parent to the strain of the bereavement and grief caused by the death of the other, this is not so. In these circumstances, careful inquiry will usually reveal that the intellectual changes had probably been present for some time before the bereavement occurred, but that the person who died was assisting the sufferer so that waning mental abilities were less noticeable. When the spouse dies, the surviving partner is suddenly left exposed to the world at large, and his or her failings become more obvious.

There are so many different underlying conditions that can cause dementia that it is difficult to provide an overall picture of the way in which dementia affects personality and behaviour. For the two most common causes of dementia, Alzheimer’s disease and multiple infarct dementia, the details are described in the appropriate chapters, but they will be seen to be very similar to the account which follows, representing a rather general picture of the features that are most frequently found in people suffering from a dementing illness. It is very unlikely that any one person with dementia will show all the changes in behaviour described.

In the early stages, often the first thing that is noticed is that the normal degree of forgetfulness that some older people experience becomes much worse, perhaps sufficient to interfere with their day to day life. They may also have difficulty in understanding new information, which may have to be repeated to them several times. In many cases, a person who has been house-proud is not so careful as he or she once was, and one can notice a deterioration in the cleanliness of the home, and sometimes of clothes.

Meanwhile the forgetfulness may continue to get worse but it becomes more apparent that the major difficulty is with recent or short-term memories whereas those dating back many years, even to childhood, are preserved, sometimes in amazing detail. People with dementia may therefore forget what they had for lunch, or even that they had lunch only an hour or two ago, but recall with some precision the contents of a meal eaten on a special occasion such as a birthday sixty or more years ago. At a practical level this memory loss can be quite a problem, as it may result in kettles and saucepans being put on the cooker and allowed to boil dry, a gas stove or fire being turned on but not lit, and so on. Times become muddled and it is easy for a person with dementia to become lost in familiar places, for example when out shopping. Sometimes, thoughtful relatives provide an electric cooker to replace one that runs on gas, or an electric fire to replace a gas fire in the hope of reducing the risk of fire or explosion. Unfortunately, this doesn’t always help, as the person for whom it is intended may be unable to master the techniques involved in working the new apparatus, simple though they may appear to be.

Disorientation in time may lead to the person with dementia getting up in the middle of the night to go off to work to a job retired from twenty years earlier, and to which he or she would normally have set off at, say, 8.30 in the morning. On one occasion, the retired owner of a factory in his late seventies insisted on returning to his previous office at 3 a.m. each night, seven days a week. Rather than upset him, his family went along with his wishes until he insisted that other members of the staff were also there at that time. Eventually they sought medical advice and he was treated for his abnormal behaviour, so that he was once again able to sleep through the night.

These changes in behaviour may also affect the personality of sufferers and it is this that is often so hurtful and upsetting to those closest to them. Repetitive questioning, either as an expression of the need for reassurance or because the previous answer has been forgotten, constant wandering, aggression, noisiness, and emotional instability take their toll, especially of those that love them.

At a variable point in the progress of the dementia, usually in the early or middle stages, language becomes affected. To begin with it may be forgetfulness of the correct word and this can often be circumvented, e.g. by asking if someone will pass the ‘thing that you write with’, rather than using the term ‘pencil’. Sadly, however, even this ability declines. Some people with dementia become unable to understand the meanings of some words, even if they are in common everyday use, such as knife, fork, or cup. If this happens early in the course of the disease it often results in frustration and irritability.

Most of us from time to time forget someone’s name. Nevertheless when we meet them, we know exactly who they are and can place them in the appropriate context – we remember perfectly well where we last saw them, what their job is, where they live, and so on. Often their name comes back to us out of the blue some time afterwards. This can also happen to people with dementia, to a greater extent than in the rest of us. More serious, however, is an apparently similar situation in which they forget who somebody is, not just what their name is. It can be extremely hurtful to a wife to be mistaken for her husband’s former secretary and treated as such, or for a daughter to be mistaken for the sufferer’s mother.

As the disease progresses, general abilities required for normal, everyday life deteriorate progressively. With many of the dementing illnesses it almost appears a matter of ‘last in first out’; the more complex activities one learns in childhood are lost in the reverse order to that in which they were learned. Eventually sufferers may appear to lose all concern for social convention, relieving themselves in public, undressing at inappropriate times and in inappropriate places, stealing, and engaging in other embarrassing forms of behaviour. Physical dependence becomes in the end considerable and even walking becomes difficult or impossible. Some but by no means all people with dementia become bedridden.

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