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Dementia:- An Introduction

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We cannot possibly cover everything in this short paper, but sufficient information is given to give a broad picture. If a reader has specific queries, please contact Barry Napier, who, at the time of writing this paper, was Clinical Nurse Manager/Head of Unit at a nursing home specialising in dementia care. Note that in this Outline reference is NOT being made to acute, reversible confusion, which can often be mistaken for an early form of permanent dementia.

Dementia can be a very vexed and traumatic topic to discuss, especially with someone who may be at the beginning of the disease, or with someone whose loved-one has it. So, a few short points will be made as an introduction to such a complex matter, together with observations made by the author whilst working on a dementia unit. In the care sector such a unit is usually called an 'E.M.I. Unit' This stands for Elderly Mentally Infirm. But, as we shall see, this is not an accurate description.

There are many types of dementia because there are many different causes. The best-known is probably Alzheimer's Disease. Most people, including some in the medical profession, are of the opinion that everyone becomes demented when they get older! This is untrue and is not borne out by the known facts. Even those who have dementia in older age tend to die naturally before the dementia becomes a problem. So, the idea that dementia is automatic for those who are older, or that dementia is always a very big problem, is a fallacy.

A permanent dementia means there has been damage to the brain cells, which usually gets worse. In some cases, when the cause is, say, an accident, the dementia can remain the same and will not alter with age. This can also happen with someone who has had a stroke, so long as there are no further strokes and the original one was mild/treated in time.

Dementia can affect anyone of any age, including children. It can be caused by something unknown - even Alzheimer's does not have a properly defined cause: although certain changes can be found in the brain of a person with Alzheimer's (discovered during post-mortem), exactly the same things can be found in normal brains! On the other hand, many dementias can have a defined cause. For example, there can be a limited form of dementia in someone who has had a head trauma. Such a dementia can be permanent/irreversible or temporary/reversible. Another form of dementia (Vascular Dementia) is caused by blood vessels hardening or bursting in the brain. The symptoms are different in some ways from those of Alzheimer's, but the end result is the same.

Life expectancy is in the region of about 4 years, but it depends on when the diagnosis was made and the type of dementia. It is actually difficult to diagnose dementia unless there is a known cause. For this reason most doctors take a very long time to put a diagnosis on paper.

With the types of dementia found in older people, certain symptoms are general, often starting with a mild memory loss for recent events and activities, but an increasingly 'better' memory for long-past events and people. Memory loss, or any other symptom, on its own is not something to worry about. Memory loss can be caused by any number of things, and can be temporary or permanent. I am very glad of this, for my own memory is atrocious! It always has been. But, a memory loss should be investigated if it continues and is accompanied by other symptoms, such as:

Crying without a known reason; accusing others of stealing from one's belongings; turning on gas taps and forgetting about them or not lighting them; forgetting where one is when out, or forgetting how to get back home even when in a familiar place; walking out of the house at night and wandering about in a daze; incontinence; undergoing personality changes; becoming aggressive; swearing or cursing; becoming lewd or sexually demanding continuously; not finding the right words when talking or thinking. There may be many other symptoms.

Such symptoms are distressing to anyone. But some of them are particularly distressing to Christians. For example, when a godly father exposes himself to females, or a quiet mother takes off her clothing and stands naked in the garden, or walks down the road in her nightdress. There may be unsavoury language, or hitting out. It is sometimes thought that the symptoms are the 'real' person, but this is not necessarily the case. It is true that because inhibitions start to disappear, any secret or low-key personality traits tend to come to the fore. But, there can be another answer in the lives of Christians...

When, say, a Christian speaks in obscenities or with other swear words, it may simply be the accumulation of what has been heard over time. As Believers, we all hear and see things we would wish not to hear and see. These enter our minds and are usually discarded because they are not right for us to consider. However, the damage has been done. Many years later, if dementia develops, these unsavoury memories, long ignored or forgotten, begin to come out. Not out of choice, but because the brain cells and mental processes that normally screen out such things, are dying. In a progressive dementia the brain usually shrinks and/or cells die at a varying rate. As they die so various activities change, and there is nothing we can do to stop the changes. The Christian son or daughter, then, ought not feel guilt at the 'naughtiness' of their loved one, who is unaware in the normal sense of what is happening.

As the disease continues, other symptoms appear: eating and sleep disturbances, severe incontinence, loss of ability to speak sensibly, an increased tendency to contract viruses, inability to walk/falling, and so on. The main thing to remember is that dementia is a physical process. It is NOT a mental illness. There may be mental/emotional problems attached, but the illness is purely physical.

At some point, if the dementia patient lives long enough (and I have known some to live over 20 years), the family will no longer be able to cope. There is no shame in this. A family cannot stay awake day and night! That is when the patient must be placed in either a hospital or, most likely, in a nursing home, preferably one that specialises in dementia. One that takes in mentally ill patients is unsuitable.

The home will have specialist staff to look after the person and, to my knowledge, such staff are very loving and caring. The best homes will centre their care around the patient, and so even in the throes of dementia they are given choice and dignity. It is likely, but not automatic, that dementia patients will require various medications. Some need medication to quieten them down, or to enable them to sleep. Many need something to stop constipation, and so on. In my own Unit, it is my policy to stop as many drugs as I possibly can. Remarkable effects can be achieved by doing this. Sadly, it is sometimes necessary to maintain a drug regime, but drugs should always be seen as a last resort, if homes are to avoid the terrible stupor that accompanies the taking of drugs that make patients sleep all the time, or to stay in a dazed and controlled state.

Dementia can affect patients in many different ways, even if they all have the same diagnosis. Much depends on which area of the brain is being damaged. Thus, every dementia patient should be treated individually, with great caution. Specialist staff can understand and live with dementia patients. Indeed, in my experience, a dementia ward or home is a marvellous place to work! Mostly, a day on a Unit is hilarious, as each patient gets up to all kinds of mischief or odd behaviour. Much of the time the place is full of laughter. Of course, there is also a serious side, and death is part of the scene. But, mainly, dementia patients are rewarding and, in their own way, they enjoy their lives to the full.

Few forget who their loved ones are, even if it appears to be so. One gentleman, diagnosed as having advanced dementia, told me that he understood everything that went in to his mind, but he simply could not express it. Yet, it seemed he did not recognise his own wife. In all this, then, there is much hope. Dementia is a physical illness and it is devastating. But it need not be as terrible as it at first seems.

© August 1997

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