UNDERSTANDING DEMENTIA: THE THREE STAGES
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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