How We Think About Dementia

Personhood, Rights, Ethics, the Arts and What They Mean for Care

Julian C. Hughes

• Publisher: Jessica Kingsley Publishers
• Year: 2014
• ISBN:
  9780857008558
• Topic: Medicine
• Subtopic: Gerontology Nursing

Exploring concepts of ageing, personhood, capacity, liberty, best interests and the nature and ethics of palliative care, this book will help those in the caring professions to understand and engage with the thoughts and arguments underpinning the experience of dementia and dementia care.

Dementia is associated with ageing: what is the significance of this? People speak about person-centred care, but what is personhood and how can it be maintained? What is capacity, and how is it linked with the way a person with dementia is cared for as a human being? How should we think about the law in relation to the care of older people? Is palliative care the right approach to dementia, and if so what are the consequences of this view? What role can the arts play in ensuring quality of life for people with dementia?

In answering such questions, Julian Hughes brings our attention back to the philosophical and ethical underpinnings of dementia care, shedding new light on the significance and implications for those in the caring professions, academics and researchers, and those living with dementia and their families.

PART I

Ageing

CHAPTER 1

Our Changing Expectations of Life

What Do We Really Want?

Almost one hundred years ago, in 1922, the play The Makropulos Affair, written by a leading Czech writer of the time, Karel Čapek (1890–1938), was first performed in Prague. Almost immediately it was picked up by the composer Leoš Janáček (1854–1928), who turned it into a three-act opera of the same name (Věc Makropulos). The opera was first performed in 1926. Unlike Janáček’s other operas, such as The Cunning Little Vixen or Katya Kabanova, The Makropulos Affair is not often performed.

The story of The Makropulos Affair is, in brief, that 300 years ago the Emperor Rudolf II asked his alchemist, Hieronymus Makropulos, to come up with a potion to extend his life. The potion was tested on Makropulos’s daughter, Elina, who fell into a coma, but recovered and ran off with the formula for the potion. She became a famous singer and then spent the next 300 years being the same age, singing, but constantly having to change her name and character so that no one caught on to what was happening. In the opera, Elina, who is now called Emilia Marty (in fact she is always called by names with the letters EM), gets caught up in a law case in which she knows all the answers because she was involved in what had happened about 100 years before. So, she eventually has to reveal all, but she decides that being perpetually young is boring and distressing, hence she determines to allow death to come naturally and rapidly becomes over 300 years old – which may be why the opera is not often performed! She dies and the secret Makropulos formula is destroyed.1

The Makropulos Affair raises a question about longevity, namely: do we really want it? I suppose the question is, more precisely, for most of us (apart from those who wish to be frozen so they can live for ever), how much longevity do we want? Most of us want to live a good long life, but not too long. Hence, given that our expectations of life have and are changing, what do we really want?

In this chapter I shall consider the significance of the final years. And my argument will be as follows:

•Something has a significance because of its context, or surround.

•The final years are surrounded by the rest of life and by death.

•This implies two things: first, that the final years have to be seen, not in isolation, but in the context of the earlier years and, second, that the inevitability of death also provides the significance of the final years.

•But this means that our understanding of the final years gives us our perspective on life as a whole, including our perspective on death.

•So it does seem important to see the final years in the correct light.

It would be good, if obnoxious, if I thought I could present the correct light in which we should see the final years. It may be helpful to understand why this would be obnoxious. A corollary of my argument would be that presenting you with the correct light in which to see the final years would be to present you with a perspective on life as a whole: I would be telling you how to live your lives. That is something we normally leave to people such as our religious leaders or to people of patent goodness and wisdom. Our conversations about ageing are not solely about old age, they are about living the whole of our lives – about living our human lives in the world. This reflects, of course, the prosaic, but nonetheless fascinating, point that we are ageing from soon after conception. In which case, if ageing is really about the whole of life, about living generally, and if – as the philosopher Ludwig Wittgenstein (1889–1951) once noted – in life we are surrounded by death,2 then (paradoxically) our lives are really about dying, at least in terms of significance.

I shall start with the idea that something has a significance because of its context, or surround. The word ‘significance’ suggests meaning. Indeed, one theory of meaning, of the way in which words stand for objects, is in terms of their signification. We could say that words are signs for objects. Such a theory, however, is generally regarded now as being too simplistic. Instead, philosophers, following Wittgenstein amongst others, would tend to understand meaning in terms of use, or better still in terms of practice. According to this line of thought, to grasp a meaning is to grasp or to have a pattern of practice (a notion to which I shall return in Chapter 11). A meaningful statement can be squared with, it is part of, a practice that in itself makes some sense. The practice is the given, within which our utterances have a place. So, significance is to do with meaning and meaning is to do with being situated in a practice – what Wittgenstein also called a ‘form of life’.3 And a form of life is not something on its own: it has many parts, so that other parts surround each component part. A form of life is a whole context of significance.

To return to ageing, the significance of the final years must be judged by the context or surround. Harry Lesser (2006) talked about the ‘boundedness’ of life. Our final years are bounded too, by the past as by the future. He pointed to two consequences of boundedness being an essential feature of our identity as persons. First, it means that it is part of our identity that we probably decline and certainly die. This is not to deny, on his view, that this is a misfortune and distressing, but, he says, ‘decline is part of being a person, not ceasing to be one’ (Lesser 2006, p.59). Second, he highlights the relationship to the future, as to the past, and the way in which this relationship is changing with time, because change is an inevitable concomitant of our boundedness. Time, indeed, as some philosophers have said, is a measure of change. It is the notion of the inevitability of change in our lives that The Makropulos Affair tempts us to deny.

To summarize:

•something has a significance because of its context, or surround

•the final years are surrounded by the rest of life and by death.

Well, but might we wish to argue that this is simply an empirical, contingent matter, that death is not inevitable? I can think of two immediate responses. First, that an unbounded life, a life like this one but forever, is not something of which we have any real current conception. Many of our day-to-day concepts would have to change in order to understand such an eternal being. How would we, for instance, expect them to behave morally? If you knew you were going to live forever, what would be your attitude towards relationships? What would be your interest in intellectual activity? In other words, the conception of our lives – but our lives lived forever – is not a conception of our lives; it is a conception of lives, which are not ours, that we do not understand.

Second, a related response is the one given by the philosopher Bernard Williams (1929–2003) in his essay entitled ‘The Makropulos case: Reflections on the tedium of immortality’ (Williams 1973). He says that the supposed contingencies – he means things such as decline and death – are not really contingencies at all. He argues,

that an endless life would be a meaningless one; and that we could have no reason for living eternally a human life. There is no desirable or significant property which life would have more of, or have more unqualifiedly, if we lasted forever. In some part, we can apply to life Aristotle’s marvellous remark about Plato’s Form of the Good: ‘nor will it be any more good for being eternal: that which lasts long is no whiter than that which perishes in a day’. (Williams 1973, p.89)

There is nothing about life in itself, in terms of the quantity of life, that adds to the quality of life. The significance of our final years – if meaning comes from quality – may be contained in just one aspect of our lives as they are then lived (from our love of music, say, or from a particular relationship).

Williams goes on to say (where EM stands for the various names of Elina Macropulos over the centuries):

The more one reflects to any realistic degree on the conditions of EM’s unending life, the less it seems a mere contingency that it froze up as it did. That it is not a contingency, is suggested also by the fact that the reflections can sustain themselves independently of any question of the character that EM had; it is enough, almost, that she has a human character at all. (pp.90–91)

What we sense in the life of Elina Makropulos, or Emilia Marty, is a life of futility and boredom, which are not mere contingent features of her particular character and life, because any way we can think to eliminate such features entails eliminating her life qua human life. It would then be a form of life of which we have little comprehension (even if we have some). And the reason for the tedium is precisely that her life is not bounded. The significance of the final years, then, is partly because these are the years during which our boundedness becomes more manifest. Karl Jaspers (1883–1969), the German psychiatrist and philosopher, referred to death as a ‘limit situation’. Of course, we come face to face with the limit situation at many points in our lives (every death, every sadness even), but during the final years it is – whether we like it or not, face it or not – a pervasive feature. The inevitability of death provides the significance of the final years.

I have not made so much of the other side of our boundedness, which is that the final years also connect to our earlier lives. Part of the significance or meaning of the final years comes from the narrative that has gone before. Charles Taylor, the Canadian philosopher, once asserted that a basic condition of making sense of ourselves is, ‘that we grasp our lives in a narrative’ (Taylor 1989, p.47). For Taylor, human persons as selves, ‘…exist only in a certain space of questions, through certain constitutive concerns… And what is in question is, generally and characteristically, the shape of my life as a whole’ (Taylor 1989 p.50). The extent to which this is true is the extent to which our understanding of the final years fashions our perspective on life as a whole, which includes the meaning of death in our lives. Just as the meaning of a word cannot be grasped in abstraction without the embedding context of a practice or form of life, so too the meaning or significance of my final years is not just what happens then, for it is situated in the narrative of my whole life, which did or did not have this-or-that direction, was or was not entwined with the lives of a loving family, is or is not underpinned by values that remain of importance to me.

Thus,

•the final years have to be seen, not in isolation, but in the context of the earlier years; and the inevitability of death also provides the significance of the final years

•but this means that our understanding of the final years gives us our perspective on life as a whole, including our perspective on death

•so it does seem important to see the final years in the correct light.

To conclude, I shall sketch some features of the final years that I see as important.

First, we need to remember that the view from old age is just different to that of a younger age. In an editorial in the journal International Psychogeriatrics, Dan Blazer pondered on the paradox that the frequency of late life depression in the community is lower relatively when compared to the frequency in the young and middle-aged, despite the fact that we might guess that older people are at greater risk of depression because of a mixture of biological, psychological and social factors, from changes affecting the ageing brain to the accumulation of social losses that comes with age (Blazer 2010). Blazer hypothesizes that there may be three psychosocial protective factors: older people ‘de-emphasize future planning and prioritize goals which are emotionally meaningful in the present’; older people acquire wisdom; older people are better able to manage stressful life events, because these are expected in this context, they are the stuff of the surroundings of the final years.

These reflections are important, I think, partly because they remind us not to stigmatize older people on the basis of our own perspectives, which simply do not have the benefit of age. The Newcastle philosopher, Michael Bavidge, has made a similar point in cautioning against the possibility of pathologizing old age:

The thought that human consciousness emerges, develops, and ages should remind us not to pathologize old age…there are mixed costs and benefits attending all stages of life. It is only when these become dysfunctional that we should start treating them as pathological symptoms. We should think of old age as offering alternative rather ...