Not enough is known about dementia

By Leon A Smith
March 22, 2013

This week saw the news of an 83-year old gentleman who still has mental capacity, taking a decision to go to Switzerland for an assisted suicide. This gentleman presumably felt that he could not face the future that lay in store for him having been diagnosed with dementia. He was also unprepared to allow his family to suffer the rigours and distress of supporting him in his last years. This news raises a number of complex issues. Firstly, dementia in itself is rarely the primary cause of death.

Dementia is a function of the brain which, in turn, can and does have implications for a number of other organs. Whilst I am not a medical physician, I am confident in saying that the terms “dementia” and/or indeed “old age” cannot in themselves be considered to be direct causes of death. The issue of this gentleman also raises other issues – of a religious, ethical and legal nature. And indeed there are profound implications to his decision. Having seen various types of dementia and what it can do to individuals and their families at very close quarters, I have enormous sympathy for this person. Yet the step which he is taking is not a choice that I would make.

Having seen the “ugly” side of dementia, diagnosis does not necessarily mean to me that life is over. Many of the residents that are being cared for by our Charity, Nightingale Hammerson, are living with varying degrees and different types of dementia. Yet a number of them are able to enjoy an acceptable and tolerable quality of life. This is brought about through quality interactions with family members and carers, as well as exposure to a pleasing environment and a variety of stimulating activities including music in various forms. Dementia is an illness that we hear more and more about as the years go by. The obvious reason for this is that the number of people who now have dementia, and have it diagnosed, is increasing all the time. Certain medications are available to inhibit the onset of the symptoms and it is possible to live with a moderate level of dementia and lead a reasonably normal life for quite some time. However, this progressive disease can ultimately become debilitating.

In a roundabout way, I am trying to suggest that dementia gets a bad press. Unfortunately not enough is known about it in the wider world and it is a condition which remains very stigmatised, largely through ignorance. To a great extent diagnosis does not mean that life is over. It does mean that life will be different and adjustments to lifestyle and routine need to be made accordingly.

Here at Nightingale Hammerson we tend to see the more advanced stages of dementia as often people are able to manage at home with certain levels of support. It tends to be when the dementia reaches a more advanced level that residential care becomes a preferred option.

Above all, we should not be frightened of the word “dementia” and we need to try and break down that stigma. Many years ago the words “senility” and “senile dementia” were in common usage. However, fortunately we have now moved on from such terminology. It may well be that in the fullness of time another word which will be more socially acceptable to us will replace dementia and the associations and connotations which it has.

Dementia is not catching. There is no airborne germ that will make it contagious. Increasingly as there are more and more people who are living to a greater age, there will be more people living with dementia and many around us will already be living with it.

Ultimately it is a disability which tends in the main to hit people later in life. This country’s new found tolerance and understanding of disabilities following the incredibly successful Paralympic Games needs now to encompass dementia as well.


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