Dementia and Stigma: The Ethical Imperative

This post is based on a talk given by our Council Member Professor Julian Hughes at “Dementia and stigma: a dinner and discussion” at the House of Lords on Monday 3 February. The event was organised by the International Longevity Centre-UK together with Alzheimer’s Research UK, Alzheimer’s Society, the Medical Research Council and Pfizer. Julian was a member of the Council’s Working Party which produced the report Dementia: ethical issues, published in 2009.

My title is ‘The Ethical Imperative’. So I plan to do three things: first, state the nature of the imperative; secondly, look briefly at some conceptual issues; and, thirdly, very briefly, gesture at practical implications.

To do this I have looked back at the responses to the public consultation we held at the start of the working party inquiry. When asked about society’s perceptions of dementia, in the main (although not exclusively) the responses were negative. Dementia is “feared, dreaded, hidden; a form of madness”, which is not understood, which upsets the ability to communicate, and which leaves carers feeling they have to apologize for the behaviour of their loved ones. People under-estimate the impact of the disease and think it is just a question of memory; or over-estimate and presume that people with dementia get violent. The Royal College of Nursing linked stigmatization with the notion of “spoilt identities”. Professor June Andrews, described “a very negative perception of dementia, equating it with decay, shabbiness and ultimately horror”. A significant number of respondents said that dementia was accompanied by shame and embarrassment. One anonymous respondent said: “No member of society should be cast onto the scrap-heap of life simply because they are no longer wanted, no longer spend money and no longer vote!” Finally, it was noted that stigma extends to include, not just families, but also those who work with people with dementia.

(As an aside, this last point is very evident to me on the three days a week when I visit care homes in North Tyneside: 12 hour shifts for minimal wages for work in a sector, which is constantly criticized, with few resources: perhaps shifting perceptions in this arena would be a place to start to eradicate stigma.)

These characterizations of dementia are borne out in practice, where I recall people with dementia and carers saying how their friends seemed to disappear. Your “real friends” can turn out to be only a very few close family members. The stigma involved in dementia is also revealed in research. One inevitably thinks of Tom Kitwood’s “malignant social psychology” and of Steve Sabat’s notion of “malignant positioning”. And it’s true to say that some of this stigmatization is self-stigmatization: people feel ashamed of themselves for having the condition. The word “stigma” derives from the Greek word meaning “to prick”: it conveys the idea of being marked or labelled. But people with dementia are often marked with other stigmata – those of old age and mental illness – which compound the problems.

The nature of stigma is clear. The reality of stigma is apparent. And yet, things are changing. In 2009, the Labour government published the National Dementia Strategy. Under the current government we have the Prime Minister’s Challenge. There are many people in this room who devote their lives to changing the culture of dementia care. Last summer, I was on a lecture tour in Australia and found myself discussing dementia with numerous taxi drivers, who mostly showed a good deal of sympathy and understanding. I was surprised by one taxi driver who seemed very thoughtful and then suddenly asked: “Do you think it’s anything to do with calcification of the amygdala?” I don’t know what I said, but I think we both wondered why he wasn’t giving the lectures not me! So, attitudes are changing.

But they must change. This is the nature of the imperative. In the Nuffield Council’s report we stressed that, on the one hand, dementia results from a disease. It should, accordingly, be given at least as much priority as any other disease in terms of funding for both services and research. In addition, our attitudes to people with the condition should be the same as for other diseases: attitudes of concern, compassion and respect; not attitudes of fear, dread and horror. On the other hand, in addition to its being a disease, we also said that it should be possible to live well with dementia if the right sort of care and support were available.

The imperative to provide appropriate care and support in part stems from the salience of two other components in the ethical framework set out in the Nuffield Council’s report. First, we should act in accordance with solidarity. That is, we should recognize our inter-dependence as citizens and the rights and responsibilities that flow from that status. Secondly, we should respect the identity and personhood of individuals, even if they have dementia, which will involve taking their values seriously.

It’s in connection with the notion of personhood that I now wish to spend a moment thinking more conceptually. I’ll restrict myself to two points.

First, I just want to rehearse my own view on personhood, which is to characterize the person as a situated embodied agent. The key idea is that of being situated. It means we live our lives in a context. None of us is understood properly without the context: of family, personal narrative, social milieu, cultural beliefs and so forth. This point cuts in two directions. It’s the basis of the ethical imperative. By our nature we are situated, which means that we inter-connect. Our autonomy and well-being (both emphasized in the Nuffield Council’s report) are predicated on the solidarity – respect for the common good – which just is a manifestation of our situated being. Situatedness cuts in a different direction too. It means that, in a radical sense, stigma must be seen in context. Which takes me to my second conceptual point.

This is actually a point about our embodiment. One of the aims of this meeting is to think more about the fact that stigma is a matter of perception; and perception is something that involves the brain. I’m sure there’s a lot in this: there must be something biological about stigma. One of our senior nurses, Aileen Beatty, hearing about the theme of this meeting, told me about the Chillingham cattle. This is a herd of about 100 cattle that roam the parkland around Chillingham Castle in Northumberland. They have done so, without human interference, for almost 800 years. They’re uniquely wild cattle and they are totally in-bred, which raises a question as to how they’ve survived. Perhaps it’s because only the strongest bull can mate with the cows. And also because, new-born calves, if weak, will not be brought into the herd by the mother, but will be left to die. Weakness, perhaps as an evolutionary mechanism, is weeded out. The herd want nothing to do with illness and disability – and thus they survive. Why should this evolutionary germ not be a factor in the reaction of homo sapiens to difference?

Well, in response to this question I want to propose a cautionary note. Let’s grant that perception occurs in the brain. Still, the meaning and significance of the percept is in the world. Merleau-Ponty, in his seminal work, Phenomenology of Perception, suggests that whilst the body is fundamental to our subjective awareness of the world, the world is fundamental as the locus, the place, in which actions have meaning. In the Preface to his book he says: ‘The world is not what I think, but what I live through’ (p. xviii).

I can make the point by noting the difference between causal and constitutive accounts. Physiological activity may give us a causal account of the phenomenon, in this case stigma. But what constitutes stigma? What does it mean to be stigmatized? If the causal questions take us to the brain, the questions about the nature of stigma take us to the world of human beings: the world we all “live through”; the world of meaning and significance in which we are situated. My caution is perhaps best summed up in the fabulous quote from Mary Midgley’s book Science and Poetry:

‘People sometimes say that the human brain is the most complex item in the universe. But the whole person of whom that brain is part is necessarily a much more complex item than the brain alone. And whole people can’t be understood without knowing a good deal both about their inner lives and about the other people around them. Indeed, they can’t be understood without a fair grasp of the whole society that they belong to, which is presumably more complex still’ (Midgley 2001, p. 120).

In conclusion, what are the practical implications of these thoughts? I think, as a general point, if we wish to understand any human phenomenon as complicated as stigma, we shall need to take a very broad view. Understanding the person – in a holistic manner – means understanding the psychosocial and spiritual environment; it also means understanding biology, from neuroscience to evolutionary theory. But understanding biology ultimately brings us back to the meaning of things in the world. In the end, it seems to me, it's the notion of solidarity that should erase the mark, or stigma, of dementia. But human solidarity, unlike that of the wild cattle of Chillingham, involves what philosophers have called the “space of reason” in which moral concern and values have a place. We should use our reason (– we are, after all, sapiential –), including the causal accounts of brain physiology, to enlarge our understanding. But finally it’s our situated nature as inter-connected and inter-dependent human beings in-the-world that provides the ethical imperative to show solidarity with all those around us, even if – and perhaps more so if – they have dementia.

Julian Hughes