In general, treatment strategies fall into three main groups. The first of these is particularly aimed at supporting those who are looking after a person with dementia and in this chapter we will consider the role of support groups, and how to set one up from scratch if necessary. The other two strategies cover behavioural approaches and the use of medication.
Over the years there have been many behavioural approaches to treating people with dementia. The best known of these is probably reality orientation (RO), but there have been others such as reminiscence therapy and music therapy that are gaining popularity at the moment. It must be said that their main purpose is to try to maximize whatever intellectual ability remains, rather than improve the situation by resurrecting brain cells or preventing further decline. Many of the common-sense approaches that carers adopt to overcome difficulties are actually reality orientation techniques although not specifically called this. Reality orientation is the application of common sense to provide stimulation and exercise to the failing mental capabilities of a person with Alzheimer’s disease or a similar condition.
Reminiscence therapy, music therapy, and similar approaches are, in my opinion, effective methods of improving the quality of life for short periods for many people with dementia. Making the most of long-term memories can bring back pleasurable thoughts and associations, and may sometimes have a calming effect upon the sufferer. Music, particularly that relating to the past, can have a similar effect. When these activities are carried out in a group, it is sometimes possible to stimulate interaction between group members, even when the individuals appear to be quite severely demented. It is, however, often worth trying these or similar approaches in a one-to-one situation if attendance at a group session is not practical. Behavioural approaches to improving the quality of life of people with dementia are very important, but it often seems as if more is made of their scientific validity than is realistic and this can lead carers and relatives to expect to see an improvement in the intellectual ability of the person they are caring for, after the session or activity is over. This rarely happens; when it does it is usually short-lived and consists most commonly of an elevation of mood.
The therapeutic strategies involving the use of medicines fall into two groups. On the one hand there is the use of existing, well-tried, medical approaches to treatment of difficult behaviour in people with dementia. These involve drugs that are well-known to most of those looking after a person with dementia, especially professional carers. On the other hand new medicines are being developed and evaluated in the hope that they may slow down, or even reverse, a sufferer’s intellectual decline. Much of our hope for the future lies in the development of the latter group and there are many exciting new compounds on the way, although their effectiveness can only be tested in clinical trials, which may not be for a few years.
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The first requirement is the need to change regularly dirty or soiled clothes, and the second, washing and bathing. Some of the problems surrounding dressing have already been referred to, but the most difficult situation is a confused person who refuses to change his or her clothes. This usually happens when the suggestion is made after the person has already dressed and is most easily overcome by arranging for the provision of clean clothes and the removal of dirty ones either last thing at night or first thing in the morning.
Having a bath or a shower can also be a problem and if it provokes a catastrophic reaction it may be better to accept that there will be fewer baths if a daily routine can’t be established. Do remember to make sure that someone checks the temperature of the bath water. A bedbath, although sometimes successful, is often more problematic than an ordinary bath.
It is particularly important to ensure that the skin areas around the genitalia, the patient’s bottom, and the areas in skin folds, including under a woman’s breasts, are thoroughly attended to. If this is not scrupulously done, superficial skin infections will take a hold, with resulting discomfort and unpleasant odours. To prevent the skin becoming chafed and sore, ensure that it is completely dry after washing or bathing. Follow towelling with talcum powder, especially in areas under skin folds.
Safety in the bathroom is paramount. As well as non-slip mats and rails in the bath and shower, make sure that the floor will not become slippery if water is spilt on it, as is the case with linoleum. Modern bathroom carpeting is very effective, but expensive. An alternative, although second best, is a substantial bath-mat fixed firmly in place with Velcro pads, attached both to the linoleum and to the underneath of the mat.
Many people believe a shower to be more unsafe than the bath. This need not be so, as many baths have high sides and it is when negotiating these that accidents can happen. A shower cubicle with a chair or stool within it and a shower head attached to a flexible hose is often easier for a relative or other carer to manage.
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At some stage in their illness many people with dementia will show a tendency to wander. This can be a problem even if it is confined to the house, but some people will take to wandering, sometimes miles, away from home. Because this is potentially dangerous it usually causes a lot of anxiety and distress for the carers. It is, however, almost impossible to be absolutely certain that you could prevent a wanderer from ‘escaping’. Even in a hospital it isn’t feasible to watch someone for twenty-four hours a day.
There seem to be many different types of wandering and it is a form of abnormal behaviour that is only just beginning to be studied in detail. In some people with dementia it may result from boredom, in others perhaps it is a way of using up excess energy; on occasions it may be a reaction to pain or discomfort. In many cases it seems that sufferers are looking for somebody or something, for instance trying to find the house they lived in when they were a child under the mistaken impression that it is still their home. At a simpler level, some people wander when they have been moved into a new environment and once they become familiar with the layout of the accommodation and settle into a routine, the wandering will cease.
Another quite common cause of wandering is the mistaken impression sufferers can have that they have an appointment or that the time for an appointment has arrived when it may not in fact be for several hours, or may even be on an entirely different day.
There are various ways of trying to tackle wandering. If it is at all possible, it is worth making an effort to understand the reason behind it. This means that one has to be certain that there is no additional medical problem that is causing distress and medical advice may have to be sought. If, however, boredom seems to be at the root of the matter, then increased activity may well help. Very often all that one can do is to divert the person’s attention to some other activity that doesn’t involve wandering. When disturbed in the middle of the night, some carers suggest that the sufferer has a cup of tea before he or she leaves for wherever they imagine they are going. While the tea is made, it is often possible to divert attention away from leaving the house to something else and from there to the need to go to bed. If they insist on leaving the house, particularly if they appear to be becoming aggressive or violent, it is best to let them leave, to accompany them, and to try to divert their attention while walking so that they will eventually come round the block with you back to home.
Unfortunately a determined wanderer will sometimes escape. There is no reason why you can’t fit suitable locks and bolts to the doors, but do make sure that they are not difficult to open in case of an emergency, for example a fire. Give your relative an identity bracelet or some other means of identification, including your telephone number or that of a neighbour if you don’t have a telephone of your own. Make sure that local people, neighbours and shopkeepers for example, know of the problem so that they can alert you if necessary.
If, despite all precautions, the sufferer wanders off for some time, undetected and unseen by anybody, don’t panic. Accidents happen very rarely. I can think of hundreds of people with dementia who have wandered regularly, despite the best efforts of those caring for them, yet I only know of two or three who suffered in consequence. The greatest difficulty caused by wandering is the reluctance of day centres and nursing homes to take responsibility for a person who may disappear. This naturally increases the stress on those caring for them. Drugs are usually of little help, but may have to be tried as a last resort. It is essential though that they are only used for a short period and withdrawn very early if they don’t appear to be helping.
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As well as scanning techniques that examine the structure of the brain and the changes within it, there are also those that measure functional changes, such as the way in which the blood passes through the brain or the manner in which the brain cells use up some of the brain chemicals. One such approach is called PET scanning (positron emission tomography). This has revealed particular patterns of abnormality in the way in which the Alzheimer brain uses glucose for example, but this has been found to be the case only in younger people with the disease, not the older sufferers who make up the majority of people affected. One interesting finding, however, is the fact that the impairment of glucose metabolism in the cerebral cortex varies between individuals with Alzheimer’s disease, and that this difference appears to reflect the way in which the disease affects the sufferer — that is, which symptoms and signs he or she has developed.
PET scanning is extremely complicated and requires access to radioactive materials, albeit in minute quantities, that are difficult to make and use. It is therefore only available in a few centres.
These new scanning techniques, and also CT scans which have been available for quite a while now, have increased our understanding of the changes in the brain a little, but perhaps not as much as we had hoped. We are hoping that there may in a few years be some less expensive and more easily available scanning techniques that will prove useful in helping us to understand what is happening in the brain and improve our diagnostic accuracy.
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It used to be said that about a third of people with Parkinson’s disease would eventually develop dementia. This view would nowadays be considered controversial. Parkinson’s disease can affect the intellect, but in many instances this is insufficient to cause what we would consider to be dementia. It is particularly associated with a slowness of thinking and reacting, but often memory is relatively intact until the later stages in those whose intellect ultimately fails.
It is important not to forget that most people who develop Parkinson’s disease are relatively elderly and are therefore also likely to develop other conditions that occur more frequently in older people, illnesses that cause dementia among them. This has muddied the waters, and it is probable that some people whose dementia has been ascribed to their Parkinson’s disease were all the time suffering from some other unrelated condition, also causing dementia. Taking account of this possibility, a more accurate representation of the truth would probably be that only about one person in ten who has Parkinson’s disease is likely to develop dementia because of the Parkinson’s disease itself. The total number of people with Parkinson’s disease and dementia will be more than one in ten, as some of them may also have Alzheimer’s disease, multiple infarct dementia, or some other cause.
It should also be understood that some of the medicines that are given to people with Parkinson’s disease to treat their movement disorders, may themselves cause confusion. If a person with Parkinson’s is found to be confused, rather than immediately attributing this to dementia caused by the disease, it is important first to make sure that the confusion isn’t a side-effect of the sufferer’s drugs.
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