The big A

Matt of the Daily Telegraph cartoons a demonstration of elderly people. They chant: “What do we want? Why did we come here? What were we saying?” I giggle, but then I flinch a little. We have often spoken of the Big C as a euphemism for cancer, but the Big A, for Alzheimer’s, is in some ways even more threatening. It is surrounded by question marks: we do not know for sure what causes it, we do not know how to diagnose it, we do not know who is going to get it, we do not know how to cure it, we do not know how to prevent it.

The threat affects everyone. I am not only thinking of the sufferers but of those who have spouses, parents and other relatives who may become sufferers. They are faced with a loved one whose memory, so central to identity, gradually deteriorates so that they may not even recognise their marriage partner of half a century.

Although “early onset” Alzheimer’s can affect people in their 40s, it becomes more prevalent with age. Around half of those who reach 85 (men and women equally) will have dementia, and in 30 per cent of cases it will take the form of Alzheimer’s. In this country experts predict that 1.4 million people will have dementia within a generation, causing a crisis in the NHS. They deplore the lack of research funds which are badly needed.

We must be grateful to the scientists. As an indication, my very selective records show 17 studies published within the last month. Numerous different approaches are being investigated and although some of these show the possibility of future progress, just as many turn out to be dead ends.

Diagnosis of the early stages of Alzheimer’s is difficult and it is hard to distinguish it from vascular dementia – which requires different treatment. But there is general agreement that early treatment to avoid or at least retard progress of the disease is one way forward. But much work needs to be done to establish what the best form of treatment may be; there are many unproven candidates. Even the brain changes observable in post-mortem biopsies of sufferers are not certainly the mechanism of Alzheimer’s; they may be the result of the disease rather than the cause. Some people who have similar changes, as the recent use of brain scanning techniques are now able to show, do not suffer from Alzheimer’s.

Alzheimer’s is no respecter of intelligence. To take one example, Iris Murdoch, the brilliant novelist and philosopher, had Alzheimer’s. None of us can afford to pass by on the other side, for any of us may be pulled across the road at some future point. And some readers of this column undoubtedly will be.

There is some evidence, though far from a guarantee, that maintaining an active mental life, and good social contacts, can be helpful. I am in my mid-70s, and it may well be that writing this column, my large family and the philosophy discussion group which I lead are helping me. Not everyone will be so fortunate.

There are some important issues for us to consider here. The first is that loss of memory is not loss of humanity. Just as the embryo is fully human although its human capacities are not yet formed, so the sufferer from advanced dementia retains humanity although their human capacities are deformed. I will not easily forget the night I spent with my father in my arms: he thought I was his mother – who had died when he was 12. As I wrote later in a poem: “His loose brain played the scales of time.” The privilege of doing that was his last gift to me.

But my father’s dementia was short-lived. I have a friend who, with his wife, looked after his mother-in-law in her Alzheimer’s for many years. Soon after she died his wife herself developed Alzheimer’s; he visits her every day, and fears that he may die before her, for he is in his 90s. Those visits are not a chore for him but a communion of their love, which only one them can express. Even on the lonely road to Calvary enough love can bring its joys.

It is experiences like this which bring home to us what honouring our father and mother, or promising to love through sickness and health may mean. But it extends beyond those with whom we have a familial connection. The figures tell us, with some certainty, that the proportion of those who will need care and loving in their old age will increase. Many of these will not have relatives to play their part – and the fashion for smaller families will make the instances more frequent. A recent study suggests that a close relationship between carer and patient can ameliorate early symptoms as effectively as the drugs known so far.

This will be a harsh test for our society of how we value the dignity of human life. It has already failed the test with regard to the unborn, and in the – often grotesque – experiments concerned with the beginnings of human life. But the question of care for the old is still on the public agenda. Perhaps it has a better chance because the politicians of the day will be among the sufferers of tomorrow. We must be ready to play a vigorous part in ensuring that society pays attention and that adequate research funds are available. Google the Alzheimer’s Research Trust and find out more.

*     *     *

Tell us about experiences you have had related to dementia and Alzheimer’s. Have they been a grace for you, or have they made you wonder about the goodness of God? How do you think our society will look on dementia as people live longer and the number of sufferers increases? You might want to bear in mind the current discussion on assisted suicide. A little bird tells me that the CH has a leading column on the subject this weekend.

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About Quentin

Science Editor, Catholic Herald. Portrait © Jacqueline Alma
This entry was posted in Bio-ethics, Catholic Herald columns, Spirituality. Bookmark the permalink.

7 Responses to The big A

  1. claret says:

    The extreme cases of dementia are forgetting to eat, to wash, to walk, to beathe and to live.
    Some kind of start could be made by removing it from the list of ‘comedy items,’ as it is still a subject of ‘sick humour,’ although by no means as prevalent as it once was.
    It is surprising that it does not have a higher profile in the public conciousness.
    Cancer has become a ‘popular’ source of charitable giving with the truism that nearly all families are affected by it in some way so it feels quite close, but for some reason dementia, that also affects all families in some way, does not attract the same charitable funding.
    Perversely one of the reasons for this is perhaps that dementia always ends in death whereas for cancer there are often cures and new life, and so there is encouragement that charitable giving does have an effect.
    Not so for dementia. It needs a higher profile but it has to some extent been harnassed to the euthanasia debate and an early intervention hastened by killing is made to look like an atractive way of dealing with it.

  2. Fariam says:

    An excellent piece. I particularly agree with these lines: “The first is that loss of memory is not loss of humanity. Just as the embryo is fully human although its human capacities are not yet formed, so the sufferer from advanced dementia retains humanity although their human capacities are deformed”.

    You also express the loving fidelity beautifully: “Those visits are not a chore for him but a communion of their love, which only one of them can express. Even on the lonely road to Calvary enough love can bring its joys”.

    I sometimes think of aging, and even the helpessness and dependency, described here as our coming to birth, infancy and childhood IN REVERSE. Seen this way, I wonder if we should be so afraid of it. In a way, it seems like a natural turn of events.

    But perhaps we are not so much afraid of the malady as we are afraid of being called to love in this demanding way – or in being left unloved…

    I also wonder, like you, how our abortion generation will cope with the challenge of this kind of caring and loving… I am afraid I am not optimistic.

    It is – and will be – a great challenge to every man and woman who calls him/herself a Christian. It can also be a superb witness for our society – if we have the love and courage to take on the challenge.

  3. Superview says:

    Quentin refers to ‘the current discussion on assisted suicide’. For example, a week or two ago The Times carried features and articles about the terminally ill and ‘The Right to Die’ controversy, meaning the right of people of sound mind to commit suicide in these circumstances. The boundary between this and euthanasia, defined as ‘the deliberate, painless killing of persons who suffer from a painful and incurable disease, or who are aged and helpless’ (Webster’s) is clearly very weak, depending on the election of the individual to die in this way.
    To some people there is nothing whatever between them – they are equally extremely distasteful, if not wicked, concepts – although it would seem that they are a minority of the population:
    http://www.timesonline.co.uk/tol/life_and_style/health/article6727116.ece
    Where the illness is dementia or Alzheimer’s there will be no question of election, unless it was made clear by the person before onset that it was their wish.

    I’ve attempted these clarifications because, objectively speaking, I believe there is a major issue ahead in the form of the humane care of unheard of numbers who have lost their minds (is this the right way to describe it?) and who are completely dependent on the care of the state for their continued existence – I think this is what Quentin is inferring when he talks of ‘a crisis for the NHS’ and ‘a harsh test for our society’. And although I am very attracted by Fariam’s comment I fear that its optimism is not the basis for a public policy.

    Let me try and put it into context. Having seen my own mother die, mercifully, after five months in a geriatric ward with no knowledge of her family and in great distress (relieved it seemed by dosing her with haloperidol that had other side effects), I am easily able, from the statistics, to multiply up my mother’s case into the hundreds of thousands and certainly call it a crisis of immense proportions, the like of which has never been seen.

    To speak plainly, all these men and women, each with their long personal histories, all will be kept alive so that they can die naturally; but in reality, it is not a natural death. Nature would speed them away, as happened in the past. It is the achievements of medical science, and the extraordinary provisions of the NHS, that keep them alive, and could probably do so indefinitely. So where is the moral theology here? Is there any point short of a person being completely brain dead when it would be humane and moral to say let mother nature take her course, let God take them away? Can it be translated into a meaningful policy that we all can support? Or is this too much like society taking control of life and death?

  4. Iona says:

    Letting nature take its course is one thing, euthanasia is quite another. Refusing treatment for a life-threatening condition is not suicide. (Is it?)

    While it’s frightening to think of huge numbers of elderly people needing full-time care as they become further and further demented, we also keep being frightened by reports in the media that significant numbers are likely to die prematurely of alcohol-related and diabetes-related conditions. So which is it? Is the majority going to die too early, or live too long? Within the last few months two members of my own family, both in their mid-sixties, have died of cancer, and a friend in her early 70s has cancer which will probably prove to be terminal. No dementia in any of those cases.

  5. Vincent says:

    I understand the orthodox view to be that, while in general one should work to preserve life, there is no obligation to use “extra-ordinary” means. This may require judgment, and judgment will vary from one person to another if the call is a close one. In addition what might be a normal and routine life saving treatment today might well have properly been called extra-ordinary a few years back.

    One example, which is much discussed, is the withdrawal of food and water. At first sight one would think this to be a very ordinary means. But I understand there to be conditions in which the patients cannot get nourishment from food, and may be actually harmed by water which cannot be absorbed. if so, under those particular circumstances, they become extra-ordinary, and indeed futile, means.

    Similarly it would normally be culpable not to revive someone from a potentially mortal collapse. But there are situations in which reviving someone is pointless and undesirable. Again, a judgment must be made.

    Another issue is the expressed wish of the patient, or if the patient is beyond decision-making, the weight given to close family.

    So it seems to be an area where one can do no more than establish general principles, leaving the ultimate judgment to the circumstances of the particular case.

  6. Superview says:

    I think the final sentence of Vincent’s comment is right, and it probably sums up what happens in many situations now. It bears re-stating that it is an absolute rule that every case has to be an individual judgement based on each person’s condition and governed by a set of principles.
    However, I do find my feelings divided over the actual circumstances in which medical staff have to make these judgements, with or without the person’s family. I have sympathy with the case for the unspoken exercise of their clinical discretion, formed and governed by the ethics of their profession, where they have to weigh up all the various factors and make a moral and defensible decision to cease using ‘extraordinary means’ to maintain life; and yet I also feel anxious about the risk that the absence of transparent, rules-based decision-making may leave for, in the absence of a better word, utilitarian judgements which are calibrated using resources as a main or key factor.

    The risk is inevitably going to loom larger in the future if the predictions materialise of the numbers of people suffering from severe dementia and Alziemer’s and requiring full time care, and whose quality of life, for what it may be, is only going to diminish to a level that is … I hesitate to use the word … but can it be other than purposeless? This is why I ask for a Christian moral theology that clearly speaks to these dilemmas and which starts from the standpoint that the modern world can, and does, defeat nature and sustains life beyond what was imaginable not just centuries, but even decades ago, and a theology that deals positively with the consequential control over the ending of life that this entails.
    For example, does holiness only consist in using all measures to sustain a life, or can there be holiness in mercifully ceasing to sustain a life which has run its course? I know this is a question fraught with possibilities, especially in the current climate, but it is surely one we have to answer?
    We may then find that, far from being seen as a reactionary minority, we reveal God’s wisdom and compassion to help people understand and deal with a painful and traumatic experience which will become increasingly common in the life of families.

  7. tim says:

    Legally, a competent person has the right to refuse medical treatment. I expect that the same right exists morally, in many cases at least. There are clearly some circumstances in which you are entitled to make a choice that leads directly to your death (today is the feastday of St Maximilian Kolbe, after all). But it’s not so clear when (or if) you are entitled to make this choice for someone else (or even for yourself, in advance of the situation arising).

    I accept that there are circumstances as death approaches where food and water are not required, even burdensome to the patient. A doctor may reasonably and properly decide this in a particular case. Obviously it doesn’t follow from this that food and water may routinely be withheld from the elderly ill with a poor prognosis. There is a vital difference between letting people die and killing them. It would be good to be able to rely on the informed professional conscience of the doctor – but in an era in which so many doctors see nothing wrong in abortion, not everyone will feel happy about this.

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