Артрит – Arthritis

Much of what has been said about nursing homes is relevant also to residential home care. Many people with dementia who live on their own may well need to go into residential care when they can no longer be maintained in their own home, despite the fullest use of community services. This will often happen well before the stage at which they need nursing care, and the choice will usually be between the social services welfare home, or ‘Part III accommodation’, and a private residential home. The local authority will levy a charge on the demented person’s estate, after applying a means-test, if he or she has any financial resources. Private residential home charges are often higher than those in local authority homes, but there are many statutory grants that will help cover the cost. These arrangements may change after the new regulations, based on the Griffiths Report, come into effect, but a local social worker will be able to advise.

Most residential homes cannot cope with a heavy, physical nursing load nor with markedly impaired behaviour unless the home is specifically designed for this type of resident. It is very likely therefore that the time will come when a demented person in a residential home will have to move to alternative accommodation, most usually a nursing home or a hospital continuing-care bed. This of course is where the benefits of dual registered homes come in. The criteria for choosing an appropriate residential home are very similar to those for choosing a nursing home. Private residential homes are often smaller and more homely than local authority homes, but this is by no means always the case. Staffing levels may vary considerably between homes and although it is not so important to have trained nursing staff to hand, it is essential to inquire about the staffing ratios and the qualifications of those employed.

Arranging for a confused relative to be admitted to a home can seem a major problem. The person to help you most is the social worker. He or she should get to know your relative, provide you with a list of homes, point out the sorts of things you ought to be taking into consideration, beyond those mentioned in this book, and help you with the financial arrangements. The social worker should also be able to assist you with any worries and reservations you may have about placing your relative in a home, and may be prepared to keep in touch with you for a while afterwards, as the guilt and other emotions that are sometimes aroused by such a move can be very distressing for the carers who have arranged it.

It may be more difficult to persuade a person early on in the course of his or her illness to enter a residential home, than to persuade a more demented elderly person to accept a move to a nursing home. It is important that you, and if necessary also the social worker concerned, try to involve your relative in making this decision. Again, gradual habituation to the new environment by occasional day attendance may make it easier. Because many residential homes are unhappy about taking on very confused people, occasional attendance of this sort will give them the opportunity of assessing whether or not they can cope. It will also give you the opportunity to assess how they react to your relative and to assist in making the decision as to whether or not placement in a nursing home may be more appropriate.

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For many people, guilt is the most destructive of all the emotions aroused by caring for a person with dementia. It can undermine the carer’s self-esteem and can arise, initially, as a consequence of choosing a course of action deemed best for the sufferer. On the one hand the family may decide to have an elderly parent living with them, so that they can care for him or her; on the other they may decide that the sufferer would be best looked after in a hospital or a home. In each situation the carers will believe that the path they have chosen is best for their relative, either because they are preventing them from having to live in an institution or because they are avoiding the need for them to live at home where everybody else in the house may be out at work or school, for example.

So often, both approaches result in considerable guilt. The family that have decided to entrust the care of their relative with dementia to an institution feel guilty about not looking after him or her themselves, while the family who have elected to keep their relative at home may worry that by providing such a high standard of care they have prolonged a life that is causing distress to the sufferer and may also have introduced all sorts of stresses and strains into the family that they never dreamed would occur. Whatever you do is likely to appear to be wrong at some time. There are very few situations to which there is only one correct answer — in most you have to accept the best compromise, and this will vary very much from family to family. It has to be remembered that by the very nature of compromise, there are bound to be disadvantages to the chosen course of action.

Many of the other problems that are mentioned in this chapter – anger, changing family responsibilities, the possibility of your own physical illness, sexual relationships, and so on – may well make you feel guilty and undermine your self-confidence. As with so many other similar positions it is impossible to come to terms with such a problem and live with it until you realize what is happening and can accept it. In these circumstances you also have to accept that you are in a no-win situation and as long as you know that you are doing the best that you can, that is all that anyone can expect of you. It is essential that you break free from your own particular circle of guilt as much as you possibly can and don’t allow it to stop you thinking positively about the future.

Guilt that is festering inside can be very damaging. You may not wish to talk to other people about it, either because you are too ashamed to admit that you feel guilty because of something that has happened or because you feel they won’t understand your own emotional responses. This is where counselling can be very helpful, whether in the form of attending a support group or on a more individual basis, and discussing the problem with others who have either faced the same problems themselves or worked very closely with families in a similar situation in the past.

You may at times be embarrassed by the behaviour of your relative with dementia, whether this involves something dramatic like screaming in public or forgetting to pay for things in a shop, or more minor problems like poor table manners which are apparent to other people. Incontinence and changing sexuality also cause embarrassment. Many carers feel guilty about their own embarrassment, but this is a situation that you should be able to tackle. Explaining the situation to others involved and asking them to make allowances would be much more helpful than trying to pretend that nothing is happening or that you don’t know what is going on. Sharing the problem, where this is possible, will often relieve the tension and sense of embarrassment. This in itself will help alleviate the degree of guilt that may be felt. So it should be possible in some but not all situations that are potentially embarrassing to reduce the feeling of guilt by reducing the extent of the embarrassment.

Arranging for a relative with dementia to be admitted to a home or a hospital, even for a short period, is one of the situations that often arouses the greatest feelings of guilt. Even if a break is desperately needed or you have been caring for your relative for years and really have got to the end of the road, the feeling of relief is so often mingled with one of shame at having apparently abandoned him or her to the care of others. If the admission is a short-term one, to allow you to recharge your batteries, being advised to stay away or to go away on holiday so that you have a complete break, may make this feeling worse. It is important, however, to put each of these situations in the correct context. As far as a short-term admission is concerned, this is the sufferer’s side of the contract. In return for being unable to continue living at home the sufferer has to accept, albeit unknowingly, some of the consequences of the unsatisfactory nature of the compromise that has been forced upon all involved. A short-term admission to allow the carer some relief is after all in the sufferer’s best interest. It will usually result in being able to stay at home for longer and even if he or she is distressed while away from home, and disturbed for a while afterwards, the memory will soon fade.

When institutional care has had to be arranged on a permanent basis, whether in a hospital or in a private home, there is no need to feel a sense of abandoning the sufferer. The need usually arises after the carers have done all they can to cope for as long as possible and when, because of their own particular circumstances, and possibly others relating to the sufferer, they can no longer provide the necessary level of care. At this point, the sufferer is usually best looked after by people with professional skills. The fact that some families manage to continue caring at home until the end of the illness should not make others feel guilty if they are unable to do the same. Circumstances are never the same and we are all made differently; some people can cope more effectively with particular situations than others and some dementia sufferers are much more difficult to cope with than others.

There is also no need to feel that you are abandoning the sufferer if you continue to visit him or her on a regular basis while it still seems to you that you are eliciting some kind of response. For many dementia sufferers, however, the time will come when it is no longer important who looks after them, but essential that they are looked after in the best way possible. Social interaction is eventually reduced for many, although not all, dementia sufferers and there will come a time when regular visiting may seem less important. If this situation does arise, it is still important to visit from time to time for the sake of the professional carers who have taken over. It will also enable you to keep in touch with what is going on and to be happy that as much as can be done, is being done.

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It can be very difficult to choose a new general practitioner, either because you have moved into a new area or decided to part company with the practice with which you are currently registered. Ask friends and neighbours who their doctor is and where the surgery is located. Ask them how they get on with their doctor and what they see as the strengths and weaknesses of the doctors they know. If possible, try to make contact with other people caring for a person with dementia and see whether their doctor has the qualities that you think are important.

Make a shortlist of practices – there will probably only be three or four at most within easy reach of your home, fewer in rural areas – and visit them. You can tell a lot from the atmosphere that you pick up as you enter the surgery and from the attitude of the reception staff. Make a list of questions to ask such as are the doctors taking on new patients, are you in their area, how do you register with them, do they have any particular interests, and do they visit the elderly house-bound. Ask if you can make an appointment to talk to one of the doctors before registering with them. The way in which your questions are treated, and more importantly whether they make you feel welcome, should help you to decide if this is the practice with which you wish to register.

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Loss of brain tissue — atrophy of the brain substance – leads to a progressive shrinkage of the brain as the disease advances. Viewed externally, the brain therefore looks smaller and the spaces or sulci between the ridges, gyri, become bigger. Internally, the hollow spaces within the brain enlarge; the brain from a person with Alzheimer’s disease weighs less than normal. The degree of wasting is most marked in younger patients; in many older people with the disease the brain can appear very similar to that of a non-demented elderly person. The shape and degree of wasting of the brain can be seen on modern brain scans.

Although there is no particular diagnostic feature of Alzheimer’s disease when the brain changes are observed in this way, the absence of any other abnormality, a cerebral tumour or stroke-damage for example, makes the diagnosis of Alzheimer’s disease more likely. The similarity, however, between the degree of brain wasting in normal old people and elderly subjects with Alzheimer’s makes this observation of less value than in younger people, for whom any significant degree of atrophy is quite clearly abnormal. The most marked loss of brain substance usually occurs in the temporal lobes, particularly in the structure known as the hippocampus. As this part of the brain is particularly important for memory function, this fits in well with our knowledge that memory loss is one of the major symptoms of the disease.

At a microscopic level there are two main changes, both of which have already been briefly mentioned. One of these is the formation of disc-like plaques of abnormal tissue, found especially in the grey matter of the cortex; the other is the collection inside nerve cells of bundles of an abnormal fibril-like substance, called neurofibrillary tangles. Both of these occur to a lesser extent in the normal ageing brain. In Alzheimer’s disease the changes are more widespread and greater in number.

Further changes that are found in the brain of a person suffering from Alzheimer’s disease include abnormalities within the cells and the formation, within the walls of some of the small blood vessels, of an abnormal substance called amyloid. This amyloid is very similar to the material that is found in the centre of the plaques. It is found in significant amounts in many cases of Alzheimer’s disease and is also sometimes discovered in apparently normal, older people.

Amyloid is found in other parts of the body in other medical conditions. Some researchers have looked for a connection between the amyloid of other conditions and that of Alzheimer’s disease. The amyloid of Alzheimer’s is very different to that found in, say, the liver or the heart in other unrelated illnesses. At the moment it seems unlikely that there is any specific link.

The abnormalities that affect the brain cells would seem to lead to the death of many of them. Therefore when the cerebral cortex is examined under the microscope it becomes apparent that there are, in many areas, fewer cells than there should be and that a significant proportion of those that remain are affected by abnormal changes such as neurofibrillary tangle formation. In addition, some of the supporting glial cells increase in number. The general pattern of these changes, however, varies considerably from case to case and the largest number of nerve cells appears to be lost from the temporal lobe and the hippocampus. The actual degree of cell loss is still a matter of dispute because measurement of cell numbers in the brain is technically very difficult. It is, however, generally agreed that the greatest cell loss occurs in younger subjects.

There are also changes in the pattern and extent of branching of the nerve fibres in the brain. Although these are difficult to understand, they are probably one of the more important changes as nerve cells interact with each other via the connections, or synapses, made between their nerve fibres and the nerve fibres of other cells. The disruption of this system of communication leads to neurological disorders.

The plaques, commonly called senile plaques, and neurofibrillary tangles are the best-researched of the abnormalities and probably the most important.

Senile Plaque

Senile plaque can be shown to consist of granular material in the centre of which is a substance loosely referred to as the core. The granular material on the rim of the plaque consists largely of nerve cell fibres, their contents, and a collection of glial cell fibres. In other words, this rim consists largely of components that are normally part of brain cells. The centre of the plaque is made out of amyloid, now known to be similar to the amyloid protein found in some of the blood vessels.

These plaques multiply in the cerebral cortex in normal people as they age and are occasionally discerned in the brains of intellectually normal people in their thirties and forties. More usually, however, they begin to build up from the age of fifty. In a person with Alzheimer’s disease they are present in considerably increased numbers and in some cases it is difficult to find an area where you can see the normal structure of the cortex because there are so many plaques crowded into the grey matter. Although they look like flat structures, this is because they are normally observed in cross-section. In fact, they are spherical or oval and seeing them on a microscope slide is rather like taking a hard-boiled egg, cutting a thin slice out of it, laying it down, and looking at it. The yolk would be the equivalent of the amyloid core and the white around it the equivalent of the granular rim of the plaque.

In Alzheimer’s disease these plaques particularly affect those parts of the brain that are associated with memory function. They spread to involve heavily all the grey matter, but not the white matter — that part of the brain that is predominantly made up of nerve fibres.

It seems very much as if the plaques are composed of nerve cells that have begun to degenerate, glial cells that may have been attracted towards the degenerating nerve cell structures, and the amyloid substance in the centre. How they are formed is a matter of conjecture. One theory is that the protein that makes up the amyloid core leaks out of damaged blood vessels; another is that abnormal processes within nerve cells lead to the death of some of their branches and that this somehow leads to the formation of plaques.

Neurofibrillary Tangles

Neurofibrillary tangles occur inside brain cells, particularly the larger neurones. Again, they are especially seen in those parts of the brain that are involved in memory function and like plaques are present in small numbers, in circumscribed areas of the brain, in people who are old but intellectually normal. Eventually the cells containing them die and all one can see is the neurofibrillary tangle material lying free in the brain substance – usually cortical grey matter. Each of these tangles is made up of many smaller filaments arranged in a helix or spiral. They are mainly situated in the cell body, but may extend into some of the nerve cell processes.

Many people feel that neurofibrillary tangles are a better indicator of the presence of Alzheimer’s disease than are plaques. The number of tangles, rather like the number of plaques, relates well to the severity of the dementia; people with more severe Alzheimer’s disease usually have greater numbers of both.

The cause of neurofibrillary tangle formation is, like so many aspects of Alzheimer’s disease, still a matter of speculation. It has been thought that aluminium may be responsible, but for reasons discussed in a later chapter this seems unlikely. It may be that there is a genetic cause or that some infectious agent is responsible. At the moment we really don’t know, but a better understanding of the processes that lead to the formation of tangles may well help us in the fight against the disease.

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As has been mentioned already, nerve fibres connect with parts of other nerve cells. The message travels down the nerve fibre using a process that is often likened to an electrical current flowing down a wire. This is a convenient way of thinking about it, and although it isn’t quite right, for our purposes it is a useful analogy. When it gets to the end of the nerve fibre the message has to ‘switch on’ the next nerve cell or one of its dendrites, and there is a special system to make this possible.

Although it looks as if the connecting parts of two nerve cells are actually in contact with each other when they are viewed through an ordinary microscope, we know from the electron microscope, which can produce an even higher magnification, that there is in fact a gap between the axon that is bringing the message and the part of the cell that is going to receive it. This gap is extremely narrow and the way the first nerve cell activates the second is by releasing a special chemical into this gap. The chemical travels across the gap until it hits a specialized area on the cell which is receiving the message, and the interaction between the chemical and the receiving area, which is called a receptor, switches on the second cell. This neurone then either transmits the message to further cells by a similar process, or reacts to the messages received in some other way.

These chemical messengers are known as neurotransmitters, and if they were to stay in the gap, which is in fact called a synapse, they would continue to stimulate the second nerve cell, which in many cases would result in its death as it would be over-stimulated. The body has, therefore, very cleverly arranged for other chemicals to be present at many of these synapses so that they can break down the neurotransmitter after it has done its job. In many of the illnesses that cause dementia, such as Alzheimer’s disease, there is a gross disturbance of the chemical neurotransmitter system. Developing medicines to try to put this right is one of the approaches to treatment that is still being experimented with, as is described in a later chapter.

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