Pills for Cheap

Although the time will come in the course of most forms of dementia when sufferers will become less involved with their environment and those around them because of apathy, loss of concentration, and so on, it is best to make the most of what they can achieve while this is still possible. Life will then become fuller not just for the sufferer, but also for those who are involved in caring. This chapter describes some simple activities that may be possible in the early and mid stages of the disease. Rather than trying to keep a person with dementia active all day long, it is probably better to break up the day by organizing several short periods of activity at convenient times. In the earlier stages of the disease it may be helpful to concentrate upon those that will result in the sufferer enjoying a feeling of achievement and of having been useful.

Other important areas that relate to the preservation of independence are the need to stop driving, to give up work, to give up living alone, and often to move house. These will all be discussed in turn.

It is not usually possible for people with dementia to learn new skills so it is best to base activities, whether recreational or otherwise, on skills that have already been obtained in earlier life, taking advantage of them until they fade from the memory store. Activities that involve relationships with other people and pets are often among the most meaningful for a person with a declining intellect. It is also important to remember the need for physical exercise.

This chapter will only be able to provide ideas, as with so many of the other chapters in this book. Trial and error alone will show what is best for an individual and his or her pattern of activity should not be expected to remain unchanged as the months pass.

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As a dementing illness progresses, relatives and, to a lesser extent, friends have to come to terms with the loss of someone they love. Although this process is a slow one, starting with the realization that the sufferer is not the person he or she used to be, and progressing to a loss of companionship and a hundred and one other losses, it is very much akin to the grief and bereavement experienced after someone has died. Although the body is physically still present, the personality goes. This is particularly painful when the sufferer is unable to communicate with, understand, or recognize you. This sense of loss is very difficult to cope with sometimes, and the long-drawn-out grieving process may affect the pattern of bereavement when the sufferer eventually dies. Just as you come to terms with the situation, your relative may deteriorate in another way and you have to adjust all over again.

With a progressive illness like dementia, the grief can get worse as time goes on and very often death is a merciful release from this type of emotional turmoil, just as it is from the physical burdens and the distressful existence of the sufferer. Many people won’t understand what you are going through. We can all relate to the recently bereaved, but this is a situation that is only really understood by others who have experienced it, either first hand or by working closely with those in your position. As for so many of the emotional problems that arise when caring for a person with dementia, the main anchor in coping with the living bereavement process can only be a sharing of the experience with others. There is little to be gained from keeping a stiff upper lip and maintaining a facade of emotional independence.

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A young person with suspected dementia will probably first be referred to a neurologist. This is a doctor who has been specially trained in the diagnosis and treatment of disorders of the nervous system, including the brain. Neurologists ensure that a thorough physical examination is undertaken, having carefully inquired into the history of the illness, and will arrange appropriate tests, including blood tests and special X-rays. However, after making a diagnosis, many will not be in a position to offer any regular help and will refer the continuing management of the patient back to the general practitioner.

An older person with dementia is more likely to be referred to a geriatrician or a psychiatrist with a special interest in the elderly, sometimes called a psychogeriatrician. Geriatricians are trained in all the disorders that are found more commonly in older people. They will perform a very similar assessment to that provided by the neurologist for younger people, but will also have access to many of the health service resources that are essential for the continuing care and support for people with dementia, and for their relatives and carers.

As well as hospital beds to provide intermittent relief or holiday admissions the geriatric department usually has a day hospital. This is not necessarily a facility for providing relief for families, but an environment in which further careful assessment can be undertaken. In most cases there has to be a ‘therapeutic’ need for a person to attend a day hospital. Day relief is provided elsewhere, for example at day centres run by the statutory and voluntary services.

Although there are no strict rules, elderly people with dementia who require screening are generally referred first to a geriatrician, but after this the care for those who are mobile as well as demented usually falls to the psychogeriatrician. There are good practical reasons for this; for instance, psychiatric day hospitals are more secure and a wandering demented person is less likely to escape and come to harm. On the other hand a demented person who is heavily dependent on physical nursing will more usually need the help of the geriatric service. There are of course many exceptions to this generalization.

Very often psychogeriatricians will visit patients in their own home, and take the opportunity to familiarize themselves with the problems that relatives and other carers are having to manage. In this way they can judge how best the resources that they have available can help. It also allows those looking after a person with dementia to demonstrate the difficulties they are facing and being able to talk about the problem in their home environment is often easier than trying to describe the situation in a busy out-patient clinic.

Once the matters of diagnosis and assessment have been completed, the specialist will plan the future with the family, the general practitioner, and often other members of his team. It is important that everybody knows about this ‘package’ so that they can see the way ahead. One must also remember that the package has to be regarded flexibly and its provisions may need to be changed as the situation alters.

In some parts of the country there are specialist clinics for people with dementia where a person with dementia isn’t just seen in a slot between people with other conditions, but is assessed in an environment in which all patients have similar problems and all staff are specially trained in this area of medicine. The pattern in different memory clinics varies, but in some every patient is seen by a geriatrician, a psychiatrist, and a psychologist, and great attention is paid to the problems and needs of the carers. (A psychiatrist is a doctor trained in the problems of mental illness; a psychologist, although not medically qualified, is trained in the skills of behaviour assessment, behaviour treatment, and other related activities; he is also able to give valuable advice.) A full appraisal of the medical problems is made, a diagnosis of the underlying disorder is established, and treatment is prescribed for the fortunate few with a treatable underlying condition. The way ahead is mapped out and the patients and their families seen regularly two or three times a year. The day to day management of patients’ care is returned to the general practitioner or to the local specialist if they have been referred from another area of the country. The clinic may also have a support group attached to it for the families of people with dementia who live in the district. The number of clinics like this is increasing and, if one is available locally, your general practitioner will probably seek from it a second opinion. One of the major strengths of such clinics is that they often have a representative of both the geriatric and the psychogeriatric services, allowing closer collaboration between the two in dealing with the needs of a particular person.

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Multiple infarcts – a series of strokes – are the second most common cause of dementia. Typically a stroke causes paralysis of the limbs and the face on one side of the body, but there are many areas of the brain where a stroke can affect the intellect without leaving any tell-tale outward signs in the rest of the body. In some cases, however, there is a mixture resulting in both physical abnormalities and intellectual difficulties. Occasionally a single large stroke can also cause dementia, but this is less common.

As dementia caused by strokes is a common affliction, and because its progress can sometimes be halted or slowed down, it deserves a chapter of its own. It is a condition that we should all be aware of and on the look-out for.

Although he is usually associated with the condition that now bears his name, Alois Alzheimer also worked in this field. He published a short report while working in an asylum in Frankfurt describing arteriosclerotic changes in the brain which he identified as usually occurring in late middle age. The symptoms and signs that he recorded in his patients are very similar to the picture that we see nowadays although many people with multiple infarct dementia are into their seventies and eighties.

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The pattern of the symptoms and physical changes in most of the illnesses that cause dementia allows one to divide the progress of the disease into roughly three phases. These are by no means exact and they vary from individual to individual with the same condition, and from disease to disease. Nevertheless they give us a useful rule of thumb and allow us to decide whether a person with dementia is in the early, mid, or late stages of the disease. Each of these phases has a particular message and often these messages are not appreciated by those working in the medical and paramedical professions and the social services.

In the earliest phase of a dementing illness it is essential to ensure that the sufferer is properly investigated for treatable underlying conditions, as already emphasized, having first ascertained that the problems are really caused by dementia and not just by a worse than average memory loss. It is this phase that is often incorrectly accepted by many relatives, friends, and others as normal ageing and what one expects of somebody in their late seventies or early eighties. At this stage the dementia is usually causing significant memory loss, perhaps some disorientation in time, and a tendency to get lost in familiar places. Sufferers may be depressed because of the loss of intellect that they perceive in themselves or they may become irritable as a result of their forgetfulness. Misplaced objects are often considered to have been stolen by others and some difficulty with speech may occur.

The next or middle phase is marked by a deterioration in ability that makes it clear to everybody that something is wrong and that it is no longer a question, even stretching the imagination considerably, that normal ageing is still the problem. This is when significant difficulty in day to day living presents itself. In this stage of the disease people with dementia may be completely unable to cook for themselves, shop, clean the house, or generally look after themselves. Speech becomes even more difficult, and wandering and similar behaviour abnormalities a major problem. This is a stage at which in many cases it becomes apparent to relatives that the individual concerned no longer has the personality they loved, though that person is nevertheless present in a physical sense. This can induce a sense of ‘living bereavement’ which may take years to come to terms with.

In most medical conditions one expects the need for support and involvement of professional people to be greatest towards the end of the disease. It is not so with many of the conditions that cause dementia. It is now, in the middle stages of the disease, that the carers need the greatest amount of support, as it is at this stage that they have the most difficult problems to contend with, both those presented by the sufferer and also those that they themselves begin to experience at an emotional and personal level. These are addressed in later chapters. It is particularly important for doctors especially to be aware of this variation on the normal disease pattern.

The third and final phase that occurs in many cases is one of total dependence, sometimes associated with almost complete inactivity, whether the person who is suffering from dementia is confined to his or her bed or a combination of bed and chair. In many ways this period is met with some feeling of relief by carers. There is no longer the risk of an explosion or a fire from an incorrectly used gas stove, nor the possibility of an accident caused by a tendency to wander out into the road or by falling down stairs. The physical side of the illness becomes more apparent and it is easier for most people to relate to this. In many instances they have looked after a physically dependent person, such as a young child, in the past and caring for a person with dementia in this final phase is in many ways similar to looking after a child. The sad thing of course is that in the case of a child one anticipates that the problem will diminish as the child grows older, whereas in the case of someone with dementia, it is going to get worse.

This account is probably one of the gloomier parts of this book. It has, however, been written for very positive reasons. Uncertainty about the future is one of the major problems with which those caring for people with dementia have to contend. Many of those involved in a professional capacity in providing advice and support are loath to explain about the future, often because they themselves find it too difficult to give relatives and other carers a full picture of what lies ahead of them. However, with the increasing acceptance of psychiatric illness as a physical problem like the malfunction of any other organ in the body, disorders of the brain, particularly the dementias, are increasingly discussed in the popular media and in casual conversation. Piecemeal and anecdotal accounts are often more frightening than having the matter carefully explained in the context of the help and support available. It is impossible to come to terms with and plan for the future if one doesn’t know what the future holds. Unhappy though the picture is, it will be seen as the reader progresses that there is an enormous amount of support available, and also a lot that an individual carer can do to help him- or herself to cope with the stresses and strains that will arise, and at the same time to help the person suffering from dementia to have as pleasant and full a life as is possible.

Many people caring for someone suffering from dementia want to know how long the disease will take to run its course. This is a difficult question to answer and it is almost impossible to fix a definite span to each of the three stages described. In most cases, however, the disease processes will run their course over a period of about five to seven years. Since it is often not appreciated that elderly people have a dementing illness when the disease is in its earliest stages, they may already be one or two years into the progression of their illness before the diagnosis is made. This means of course that the disease will appear to last for a shorter period.

In younger people, especially those under sixty, the disease often runs a more rapid course and may be two or three years less in duration. Even so, the disease may appear to last longer as it is often less likely that in younger people the early stages will be mistaken for anything other than something abnormal, whereas if the same symptoms had become apparent twenty years later, they might well have been mistaken for the changes of normal ageing.

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