The behavioural and psychological problems of those suffering from dementia are often the most difficult test for those looking after them. As well as wearing a person down, constant abnormal behaviour taking the form of accusations, violence, or even minor aggression can be very hurtful and demoralizing. If a carer’s sleep is constantly disturbed, it won’t be long before a social crisis is precipitated. But before embarking upon individual behavioural problems, there are some general points that are worth bearing in mind and which may be relevant to many of the situations in which carers may find themselves.

We all need a routine of some sort. Some people have very regimented existences while others have greater flexibility in their day to day lives. It is very important to try to introduce a regular routine for people with dementia. This should include having a set place for objects and a set time for different activities. The dementia makes it very difficult for a person to learn new information and it can be very bewildering and frustrating to look for something that is missing, without the ability to think about where it might have been moved to. Similarly, knowing that certain activities such as mealtimes or visits to the shops generally occur at a certain time, not only makes them easier to remember as the memory wanes, but can also act as a focal point which a mildly demented person can look forward to. The routine must, however, be flexible and will probably need to change as the disease advances. Once it becomes apparent that various aspects of it are not working they should not be forced upon the sufferer, but should be altered or abandoned as seems most appropriate.

In general it is best to help people with Alzheimer’s disease or one of the other dementias to live as much in the real world as possible. This means regularly telling them about the environment in which they live, reminding them of the day or the month and, at least at the beginning, of the events that are going on in the world around them. However, as the disease advances, sufferers will be able to cope with this less and less and if they wish to do something unusual, there is no reason why they shouldn’t as long as it isn’t harmful and if it proves impossible to persuade them to do otherwise without a lot of trouble and upset. For instance, somebody I know with Alzheimer’s disease insists on wearing his bathing-trunks rather than underpants. There is no harm in this and it causes much distress to both him and his wife if she tries to insist that he wears underpants.

Many people with dementia over-react to a threatening situation. This catastrophic reaction should be avoided whenever possible as it eventually does more harm than good. It may be possible to win the battle over something on one occasion but life will probably be made very much more difficult afterwards. If possible, anticipate such reactions and try to find ways around them.

While it is important to maintain the independence of individuals for as long as possible, don’t try to make them undertake an activity such as doing up small buttons that you know they will not be able to complete. It is important to avoid failure as much as possible. If the activity can be managed, even though it may take two or three times as long as it would if you were to help, whenever possible it is better not to intervene but to be patient. As time goes on, however, and help is needed, rather than taking over completely, start by providing assistance. Usually over a period of years the dementia will take its toll on the ability to carry out simple everyday activities and there will be a shift from independence or partial independence to more or less complete dependence. This should take place gradually and in many ways is a reverse of the situation that parents find themselves in with children. Although the situation progresses in the opposite direction, the principles are very similar.

Communication is extremely important. It is easy to attribute failure to understand what is said to the confusion that results from the dementia. In many instances, however, just as is the case with other old people, a person with dementia may have difficulty in seeing or hearing. It can be very awkward to assess the sight and hearing of a person who has an illness that causes dementia as they may be disinclined to cooperate with the assessment. Nevertheless there are all sorts of clues that can be picked up by the carer. If there is any doubt, especially with hearing, it is important to ask the doctor to examine the ears and to clear out any wax. If there is still doubt, a trial with a hearing-aid is often helpful in deciding whether deafness is a problem.

Communication is not confined to language, and non-verbal communication is particularly important because, as has been mentioned in earlier chapters, many of the illnesses that cause dementia interfere with a person’s ability to understand and use language. Without realizing it, we all receive and transmit signals by the expressions on our faces, our gestures, and the position of our body, and the ability to respond to this type of communication is retained in many people with dementia even into the more severe stages in some cases. Smile, be positive and friendly, and don’t shout unless it is necessary. You will probably have noticed how a smile usually elicits a smile in return. This often reduces tension and can help with relaxation, particularly if a difficult situation is arising. Similarly you can use the body language of the sufferer to help you understand what is going on in his or her mind. Facial expressions, actions of the hands, and posture are very important. Although there are some aspects of body language that are similar in most people, individual patterns vary greatly and if you observe carefully you can soon learn to pick up the signs.

As well as speaking clearly, and in some cases slowly, and using relatively simple language, it is often a good idea to use props when trying to communicate with someone who is beginning to have difficulty with language. Photographs of members of the family or friends and pointing to the individual when discussing them can be helpful, as can the use of large calendars or clocks for the purpose of time-orientation. Disorientation in space is often another problem and some families that I know have painted the doors in their house in different colours to help distinguish between the kitchen and the dining room. You can take this a step further by putting a picture on the door, of a WC or bed as appropriate.

For the highest standards of care, the important points are to establish a routine, but to treat this flexibly as the situation will change; to make the most of communication, both verbal and non-verbal; to avoid catastrophic over-reactions; to avoid situations that cause a sense of failure; and to be protective without being over-protective. In other words you will need to be a paragon of all the virtues, which is of course impossible. It is important to accept this and to realize that you may sometimes appear to make mistakes, but as long as you are trying to do the best you can, that is all anyone can really expect of you.

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Another reason for studying in detail the way in which the disease affects people is that it may be possible to develop better ways, both of differentiating Alzheimer’s disease from other illnesses, particularly MID, and also of recognizing when MID and Alzheimer’s disease co-exist. Although it is possible to differentiate these conditions with quite a high degree of accuracy, a confident diagnosis is still much more difficult than with many other problems.

Although Alzheimer’s disease is usually regarded as a single condition for the purposes of diagnosis, there is sufficient similarity of symptoms and signs with other conditions to confuse even the most experienced doctor on occasions. In the present state of knowledge, accuracy in making this diagnosis is of the order of 80 per cent. This may well surprise many readers as it means the diagnosis may be wrong for as many as one person in five. This is of particular importance for the trial of new treatments; if it is known that there is a one in five chance of incorrectly including people without Alzheimer’s disease in the study, it means that the treatment must be expected not to work in at least one fifth of cases. This has to be taken into consideration when assessing the results of clinical trials of new medicines.

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This condition was described in 1892, before Alzheimer’s disease, but appears to occur much less frequently. Like Alzheimer’s disease it is a chronic degenerative condition of the brain. In the majority of cases it appears as if there is an inherited tendency and it strikes particularly in late middle age. It is said to affect women a little more frequently than men.

The most striking feature of this condition is the way in which the degeneration and wasting of the brain tissue appears to be confined to two lobes in particular, the frontal and temporal lobes. Sometimes the left hemisphere appears to be more affected than the right and the disease also seems to start at the front end of these lobes. When one examines the brain under the microscope there is a considerable degree of nerve cell loss and also an increase in the numbers of the non-nerve cell population, the glia, in the outer layers of the brain — the cortex. Some of the neurones are distorted in a particular fashion; the nerve cell bodies appear to be distended by some abnormal material that has collected within the cell.

The symptoms that a patient shows reflect the site at which the damage occurs. Abnormalities of the frontal lobe often result in deterioration in personality and disorders of mood. These changes make it quite clear that something is amiss, especially as they usually occur in a younger person. Unlike some of the other illnesses that cause dementia, in the early stages of the disease memory function and the ability to use language are less affected in proportion to the personality and mood changes. In many instances therefore it is possible to suspect the diagnosis after questioning a relative or close friend and examining the person concerned. A brain scan may then show that the atrophy has particularly affected the frontal and temporal lobes and this makes the diagnosis almost certain. In most of the other dementias memory function is affected first and is usually one of the aspects of mental function that is affected most.

The condition is not always easy to spot, however, and can sometimes mimic the commoner illnesses such as Alzheimer’s disease. Alzheimer’s sufferers may be caught shoplifting because they have absentmindedly put an article in their bag, forgetting that they ought to pay for it. Rather than having forgotten, Pick’s sufferers may well have felt that they should not be expected to pay or perhaps just wanted to see if they could get away with not doing so.

As the disease progresses it becomes more and more difficult to distinguish from other conditions like Alzheimer’s. Often the diagnosis is only made when the brain is examined after the person has died. Most people with Pick’s disease live for five or six years after the diagnosis has been made, sometimes a little longer.

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