Article
‘Y’ feel me?’ How do we understand the person with dementia?
Dementia 12(3) 348–358 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213479597 dem.sagepub.com
Julian C Hughes Newcastle University/Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, UK
Abstract As dementia progresses problems of understanding emerge. Eventually spoken language can be lost. And yet, even into the severer stages of dementia, close carers can often understand the person in a variety of ways. Loss of language is not just a practical problem. It raises philosophical issues too. As Wittgenstein suggested, understanding entails grasping a form of life. Our understanding of agitated, pacing behaviour is similarly based on a unique history, on culture, on context. Hence, a philosophy gestures at the foundations of care. There is the potential to feel the person’s meaning, even when it cannot be spoken. This is not simply by means of an alternative to language. The philosophy suggests that our engagement with the person is through and through. Understanding anyone is more like an aesthetic judgement than a cognitive act. Keywords aesthetic, dementia, embodied, meaning, personhood
Introduction In the cult television series The Wire, the Baltimore African-American drug dealers frequently, after an explanation or direction, use the expression ‘Y’ feel me?’ in an interrogative fashion to mean something like ‘I wonder whether you understand what I’m saying to you?’. It is a useful and philosophically interesting expression. It could, after all, be replaced by simply asking ‘Do you understand?’; but there is often more going on than simple understanding of the uttered words. Not that understanding is simple: far from it! But we could construct a simple model of understanding according to which to understand ‘p’ means to understand a particular proposition, which in turn requires that the parts of the proposition are understood. Thus, to understand ‘The cat sat on the mat’ means to know that ‘The cat’ refers to the allergenic hairy four-legged creature and so on. The trouble is that Corresponding author: Julian C Hughes, Psychiatry of Old Age Service, Ash Court, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK. Email: [email protected]
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in The Wire what has to be understood is often what is not said: it has to do with the history, culture and social context of ‘the game’ (i.e. drug dealing). Or, perhaps, it cannot be said, because it is too dangerous to speak (because ‘the game’ also includes murder). These things are there, gestured at by the interrogative, but not articulated in propositional form. They are felt, not said. Another way to put this is to point to the context which allows understanding. It is not just a grasping of the individual word meanings. The philosopher Ludwig Wittgenstein (1889–1951) put it this way: ‘To understand a sentence means to understand a language. To understand a language is to be master of a technique’ (Wittgenstein 1968, I¨199).
The first thing to notice about this is that to understand a sentence is not (simply) to understand the words in the sentence. It is something much broader. It means that you have grasped, more or less, a language. Comprehension means that a whole lot of other things are in place: some sort of understanding of grammar for instance, of how the subject is linked to the object by the verb and so on. And then Wittgenstein points out that what you have acquired, in understanding a language, is a way of doing something in the world. It is not simply an internal mental computation by which a word is linked to an object. It is an outer action, a technique, performed in the world between people. To understand my meaning is to grasp something. This is not to be thought of simply as a metaphysical grasping, it is not solely a mental event, it is a performance in the world; and, of course, this is the human world of sensate bodies. When you really understand something I’ve said, ‘Y’ feel me’. Or, at least, we have grasped something together: you feel my meaning, you don’t simply compute something in your head. In this paper, I wish to explore how these lines of thought might be relevant to our understanding of people with dementia. We need to start by thinking of real people with dementia and to consider the practical problems associated with communication, especially in severe dementia. I shall do this by presenting two vignettes, both drawn from clinical experience. Both are fictitious, but I hope the features they present and issues they raise will be readily recognisable by practitioners in the field of dementia. The philosophy, which I shall then consider, explains and underpins approaches to health and social care for people with dementia, which seem to be at least humane. This mixture of philosophy and practical experience, I contend, should provide us with deeper understanding of the issues, which arise in connection with looking after people with severe dementia; understanding, however, which is not ‘just’ theoretical, but which is linked to an imperative in terms of how we should act. There are two points to add before presenting the vignettes. First, the reader should note the inevitable importance of the human body. Our contact with, and therefore our understanding of, people with dementia is inevitably embodied: we understand not just mentally, but through our bodily interactions. This is an issue to which I shall return. Secondly, although my perspective is that of a clinician (more specifically, that of a medical doctor specialising in psychiatry of old age), the implications of my philosophical comments should be, I suggest, widely applicable: not solely to those who also work in health and social care, but to all those (families, researchers, designers, entertainers, lawyers and so on) who meet, care for, or whose work might affect the lives of people with dementia. The philosophical issue of personhood, that is, has implications for us all.
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Mr McNulty1 For a number of years now Mr McNulty, who has a diagnosis of mixed vascular and Alzheimer’s dementia, has tended to pace the corridors of the nursing home in which he lives. He no longer recognises his sister when she visits. He talks incessantly whenever anyone is near. He uses proper words, but overall they make no sense. It is not possible to have a coherent conversation with him, although there are snatches of sense. ‘It’s going to be a good one’, he might say; but just as you think he is talking of the weather, he adds, ‘You can’t do it on your own’. He often stops to bang the walls, which he does with a good deal of force, and if you ask him if he is all right he turns and says: ‘You’re not important, I’m not going to, you go away’. At times Mr McNulty seems angry and irritable, whatever is said to him. At other times, he smiles and seems very friendly. He will often walk around holding someone’s arm for considerable periods of time.
Mrs Barksdale Her husband will tell you that Mrs Barksdale has had signs of her Alzheimer’s disease for almost a third of their married life. They are approaching their 60th wedding anniversary and he recalls that the first evidence of memory problems appeared about 20 years ago when she got lost on a holiday. Mrs Barksdale is now confined to bed. She is totally dependent for all aspects of personal care. Mr Barksdale comes in to feed her lunch every day, but this is becoming more difficult because of the risk of choking. At other times of the day, Mrs Barksdale simply lies in bed. The nurses have set up a kaleidoscopic projection, which plays on the ceiling above her bed, and she seems to be engaged by this. The radio in her room is also tuned to classical music, which it is known she used to enjoy. When you approach her bed, her eyes will eventually turn in the direction of her visitor. She will utter the occasional soft noise in response to gentle words spoken to her, but her vocalisations are completely incomprehensible and mostly she just stares at the moving coloured shapes on the ceiling.
What’s the problem? Seasoned clinicians or care workers might read the vignettes about Mr McNulty and Mrs Barksdale and regard them as no more than run-of-the-mill, rather than as cases which might cause philosophical concerns. I shall now suggest two concerns (one philosophical and one clinical), which those working in the field might readily dismiss, and I shall present caricatures of the grounds they might give for doing so. But I shall go on to highlight what I perceive to be a deeper problem (to do with the foundations of care) and argue that it points in the direction of concerns about which correct thinking should underpin and encourage good practice in dementia care. The first concern is a philosophical problem, which is now quite familiar (Hughes, Louw, & Sabat, 2006). It is about the standing of Mr McNulty and Mrs Barksdale as persons. The philosophical problem stems from the thought that it is memory or consciousness that makes us the persons that we are (Hughes, 2001). More sophisticated treatments of this problem would distinguish between quantitative (numerical) and qualitative accounts of personhood: is the problem to do with the person not being the same in the sense of not having the same properties (not being the same quantity), or not
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being the same in the sense of not being identifiably the same (not having the same qualities)? Numerically speaking, my desk is the same desk if today I paint it as it was yesterday; but qualitatively it is different (McMillan, 2006). The same distinction can be applied to human beings. I can identify myself over time by my likeness to the person depicted in my passport, who has a certain general appearance. If I deviate too far from the picture given in my passport, my claim to be the same person might be challenged. To use the distinction derived from the philosophy of Paul Ricoeur (1913–2005), and elaborated in connection with dementia by Radden and Fordyce (2006), my numerical properties have enough sameness for me to have this much idem identity (i.e. what I am is the same); but in terms of myself (my ipse identity or selfhood), I might have changed radically from the person depicted in the passport (e.g. I might now eat toad in the hole and support Newcastle United Football Club). The thought that memory or consciousness is critical for personhood can be used to argue that someone (like Mr McNulty) with dementia cannot be regarded as the same person over time because the key property, which supplies idem identity in terms of personhood, has vanished. Alternatively, it might be argued that the person with severe dementia (like Mrs Barksdale) has changed so radically in a qualitative sense (in terms of ipse selfhood) that either she cannot be regarded as the same person or she cannot be regarded as a person at all. Such positions have been suggested at various times, but my aim is not to rehearse old arguments (see instead Hughes et al., 2006). My guess is that clinicians and care workers would not be too impressed by such arguments. They know that Mr McNulty is quite a character and Mrs Barksdale needs lots doing for her, but is a lovely person. In both cases the question about the standing of the person qua person will seem largely irrelevant. On the whole, the suggestion that either Mr McNulty or Mrs Barksdale might not be a person at all, but just a sentient being akin to any other animal, would probably seem either laughable or insulting.2 Abstract theories about personhood might, I guess, seem some way from the coalface of changing, feeding and toileting people with severe dementia. The second problem is a clinical problem to do with communication. Mr McNulty will respond to you, but his speech makes no real sense; you cannot enjoy a sensible conversation with him, because his responses are always non-sequiturs. More importantly, if he seems distressed and you are worried about him you cannot just ask him what the problem is. For Mrs Barksdale the difficulty is even more marked, because she does not speak at all. So it is impossible for her to tell you anything. In addition, it makes it very difficult – for Mr McNulty as well as for Mrs Barksdale – to know what to say to them, because there is no true conversation. It is partly a question of embarrassment: when you say things to people who either respond in an irrelevant manner or not at all, it is difficult not to feel self-conscious. More importantly, you would like to say the right thing, the one that will in some way be helpful rather than the reverse. The absence of verbal communication seems potentially on first blush to threaten good care in a number of ways. Again, I believe many clinical and social carers of people with dementia would be sympathetic to the problems around communication, but would dismiss them as simply showing a lack of experience. I think of the care assistant I saw the other day in a privately run nursing home who, having just finished feeding a woman very like Mrs Barksdale, then smoothed her hair, told her how lovely she looked and kissed her a couple of times on the forehead. Or I think of the nurse in a National Health Service (NHS) unit whom I witnessed taking the hand of a man who seemed to be distressed,
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very like Mr McNulty, and walking with him whilst engaging in a perfectly natural-sounding conversation, albeit one that lacked coherence in direction and theme. So, my feeling is that experienced workers in the field of severe dementia would dismiss both the philosophical and the clinical problems raised by these cases. I have caricatured these dismissals in terms of scepticism about the relevance of philosophy and appeals to experience. It is worth noting, however, that in the examples of good care, which I have just given, the instinctual interactions of the care assistant and the nurse with the persons with dementia were not only sensate, but also relied on embodied understanding and reaction. But now I wish to point to a deeper problem. It is not so obvious as a problem, but I feel it is foundational. Indeed, it is a problem about the foundation of clinical practice. Mr McNulty raises the problem in that he does not allow the type of engagement which normally serves to sanction clinical contact between the carer and the cared for. If you ask him ‘Can I help you?’ he is unlikely to say either ‘yes’ or ‘no’. If you think he has a problem and ask him what it is, he is unlikely to tell you, or he may even be abusive. Meanwhile, albeit Mr McNulty can still demonstrate his immediate wishes via his actions, Mrs Barksdale seemingly lacks any semblance of agency (but see below). Her total dependency means that her care is based on considerations beyond any wishes, beliefs or values that she may or may not hold. The foundations for her care, I feel, are brute. One immediate response to this is to say that I am over looking capacity legislation. In England and Wales the relevant statute law is the Mental Capacity Act 2005. This seems to settle matters nicely, in that we can say that Mr McNulty and Mrs Barksdale both lack capacity in various ways and so decisions must be made in their best interests, which would include attention being paid to any advance care plans and so forth. The foundations of practice in the setting of incapacity, therefore, are simply set by the relevant law. Rather than overlooking capacity legislation, however, I would contend that we should look both through it to its foundation and into it to its application. The foundations are something philosophically brute and the application of the laws requires an ethical approach not given in the law itself, albeit hopefully suggested by it. To understand this we can go back to the caricatured earlier responses. We can dismiss the philosophy of personhood as being too theoretical, but family carers are known to say things like ‘He’s not the person I married’ or ‘She stopped being my wife the moment she moved into this home’. And we cannot, despite the examples I have given above, pretend that dementia care is always what it should be: examples of actual abuse have hit the headlines in the UK in the last year or so; but we know that poor quality dementia care has been ubiquitous for many years and not just in the UK. Tom Kitwood’s mission to raise the standards of dementia care was driven by this very fact: care needed to be person-centred precisely because the standing of the person as such seemed to have slipped from view (Kitwood, 1997). Fifteen years after Kitwood’s death we cannot pretend that things are considerably better, despite strenuous efforts and examples of good practice. Understanding the basis of personhood is not irrelevant to the foundations of good practice in dementia care; and, similarly, it is persons as such who are afforded the protection of the law. Personhood is a philosophical concept and one which underpins legal theory; but it is more than conceptual because the standing of the person is a brute fact of health and social care as well as legal practice. What if, instead of looking to the underpinning basis of law, we look towards actual practice within the context of the law? What if Mr McNulty were to develop a chest infection and a question about treatment with an antibiotic were to arise? What should be done when Mrs Barksdale’s swallowing problems become worse and we have to act in her best
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interests and either feed her by mouth in the knowledge that she might develop an aspiration pneumonia or consider artificial feeding? The law will give us direction here, but there remains the requirement that at some point an evaluative decision is required. In the absence of the person him or herself making a capacitous decision, even in the face of advance care planning, an ethical decision is required: is this the right or wrong decision? Was this absolutely what Mr McNulty intended by his advance refusal of treatment? Can we be sure that this is what Mrs Barksdale would have wanted under these specific conditions (even if her husband says it is)? The problem is one to do with communication and it is true that experience will help, but the experience has to be of the right sort. We are talking, after all, about ethically problematic decisions. So, at the very least, we require an ethically nuanced debate about what might be best. Again, I want to say, we are nudged in the direction of the foundations of practice. For the issue is one of really knowing the person, of having a feel for what he or she wants and would have wanted. That comes from ‘being with’ them (and with their relatives) and not simply from ‘doing to’ them. So experience is vital, but it is not the experience of a taskoriented regime that is required. Nor is it the experience of paternalistic decision-making, even if it is beneficent in its intent. What is required is some sort of deeper engagement. It is, to cut to the chase, to do with feelings not with words. So far, based on the cases of Mr McNulty and Mrs Barksdale, I have suggested a philosophical problem to do with personhood, which I initially dismissed as too theoretical, and a clinical problem to do with communication, which I dismissed as being ‘just a matter of experience’. But I have subsequently argued that both the philosophical and the clinical problems are foundational in that they point towards what really underpins good practice in dementia care: the brute facts of personhood and the need for a deeper engagement based on communication at the level of feelings.
Language users To understand the person with dementia we have to consider the brute facts of personhood. Now, one thing I wish to suggest, but not argue for, is that human life – the life of human persons – is characterised by language. We need, therefore, to see what this implies. One thing it implies is the importance of meaning. I agree with McCabe (2005, p. 67): ‘It is characteristic of human animals to deploy symbols, to live in the structure we can broadly call language. What we call having a ‘mind’ is having the capacity to live in such structures, structures which, like the nervous system, or the genetic programme of an animal species, provide for meanings. Language is the nervous system of the human community. It is the context for meaning’.
Such thoughts return us to our opening considerations around understanding. But before we philosophise, we should again recognise the clinical problem and its implications, namely that, in dementia, language becomes seemingly meaningless and is eventually lost. What then of personhood? Well, the argument I shall pursue is that to understand language is to take part in a form of life. As Wittgenstein (1968, I¨241) said, when people agree in the language they use, this ‘is not agreement in opinions but in form of life’. Moreover, I wish to say that participating in the human form of life can be conceived as an aesthetic act as much as a cognitive one: it is on the feeling side as much as on the thinking side.3 Of course, the fully functioning human being feels and thinks. The mistake is to conceive human thought to take place without feeling, or human feeling without thought. And this is a mistake because it is
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the whole human person who thinks and feels and he or she does this in an embodied fashion. As Taylor (1995, pp. 170–171) states: ‘Our understanding is itself embodied. That is, our bodily know-how, and the way we act and move, can encode components of our understanding of self and world . . . My sense of myself, of the footing I am on with others, is in large part also embodied’.
From the broad perspective of the human person, we understand a language not by understanding individual words, not by understanding sentences even, but by grasping the whole complex context in which language has meaning. And that context is shared. It is inter-personal. The human-person-perspective reflects our standing, and that of people with dementia, as beings-in-the-world (Hughes, 2011). But our embeddedness in this context of meaning is an embodied one in which gestures have significance. As Kontos has argued (2004): ‘Language has inner content but the meaning of words is not entirely contained in the words themselves; rather, their meaning emerges from and is influenced by the contextual discourse. During interactions, words assume a gestural significance . . .’.
There is something that is understood by those close to a person with dementia, which may not be immediately apparent to others, which is not necessarily conveyed by words but by the carer interacting with the whole surround, grasping the gestures and grimaces of interpersonal space, by the feelings that emerge between people, which in part will reflect deep engagement with the person’s narrative history and psychosocial, spiritual and cultural background. Understanding a person, then, is like understanding a language. But just as understanding a language is neither solely, nor mainly, a matter of understanding how individual words connect to individual meanings, so too understanding a person is not just a matter of understanding what he or she says. Rather, it is a matter of sharing a form of life. So, even if the person lacks coherent speech (like Mr McNulty) or lacks speech altogether (like Mrs Barksdale), we can still establish meaningful connections. These connections might depend upon the interpretation of gestures, looks, grimaces, mien, nuanced movements and so forth, but might also involve techniques and attitudes (Allan & Killick, 2010). The meaning is not, of course, given by words, but by context. In the context of dementia it becomes obvious that judgements will be required. The judgements are interpretations involving the whole field: anything and everything about the person that might be helpful. Much of this will be intuitive. But judgements rely on and imply background (mostly tacit) agreement, for instance that the world is seen in this particular way (Hughes & Ramplin, 2012). Just as laws require evaluative decisions for them to be put into effect, decisions reflecting shared values, so too communication requires background judgements to be shared in order to sustain meaning. This is what we mean by the interpretation of the law. So, too, this gesture means such-and-such, but the consequence of that is so-and-so. Thus we can say, with more or less certainty depending on our level of expertise, that this person is in pain, which in turn means certain things in terms of our response (i.e. at the very least that we should consider pain relief, but also that we show concern in this or that way). We even say, for instance, that we can feel the other person’s pain. The notions of judgement and interpretation help to make the link with aesthetic appreciation. Wittgenstein (1968, I¨527) wrote: ‘Understanding a sentence is much more akin to understanding a theme in music than one may think’.
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And a little later (Wittgenstein 1968, I¨533): ‘Ask yourself: How does one lead anyone to comprehension of a poem or a theme? The answer to this tells us how meaning is explained here’.
His point is that we do not explain music or poetry by pointing to the notes or by simply giving definitions of words, but by making connections with other things in our shared lives. Perhaps we point to a line somewhere else, or to another piece, where there seems to be something similar; perhaps we show what we feel at this point in the piece by a movement (of assertion or excitement) or by a facial expression (signifying joy or despair); perhaps we explain it by pointing to something in the piece’s history; perhaps we understand it by reference to something in our own lives; and so on. This is not (at least not solely) a matter of explaining terms by definition – and in the case of music this cannot be done anyway – it is a matter of setting the piece in a meaningful context, so that it now has meaning for the person concerned. In part, the person will have to do this for him or herself on the basis of the already mutually shared background. But it is certainly not all cognitive work. To understand a language is to understand more than simply what the words stand for; and so too with music, poetry and people. Wittgenstein used the term ‘language-game’ to describe the range of new types of language, the multiplicity of uses we might conceive for language; and the term ‘language-game’ was ‘meant to bring into prominence the fact that the speaking of language is part of an activity, or of a form of life’ (Wittgenstein 1968, I¨23). Back on the streets of Baltimore (at least as depicted in The Wire), the drug gangs play ‘the game’, which even has its own language, and to understand which we need to draw on shared forms of life where the notions of family, trust, loyalty, territory, debt, duty, honour all have a role to play, even if the virtues of compassion, honesty, justice and temperance are sadly lacking. Wittgenstein (1968, I¨535) asks: ‘What happens when we learn to feel the ending of a church mode as an ending?’.
The answer is that we have acquired a way of being. It is not that we have learned some fact. It is not that a theorem or equation has been mastered. It is that we see the world, or hear it, in some new and particular way. We can now make the judgement that the piece has ended. We understand the shape of the music. We feel the world thus and so. We have developed an aesthetic sense of things. Moreover, this feeling is now, for us, not just a matter of cognitive understanding, it is also an embodied act. The music induces in me a feeling of completion, of resolution, of closure. I understand the music when I have this feeling, just as I understand a language when I react in this particular way. And I can understand the person with dementia when I open myself up to the possibility of engaging at the level of feeling.
The foundations of care It is characteristic of human persons that we are language-users, but a brute fact about people is that we are embodied. As we have seen, language – the way we communicate – reflects a form of life that includes activity in the context of meaningful relationships, which are also typically embodied. There is a link, then, between our embodied
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situatedness in a particular context, which is given by personal narrative, family history, culture and so forth, and the need for deeper engagement in terms of communication at the level of feelings. The link is supplied by meaning, which has to be seen as something that occurs between our bodies in public space, not solely in our heads (Hughes, 2008). To grasp my meaning, to understand me, therefore, is also a matter of feeling. If cognitive functions are lost, there is nothing to say that the capacity to feel is also lost. Hence, dementia care is a matter of aesthetic judgement as much as it is a scientific, pharmacological, cognitive, psychological or social endeavour. The foundations of care rest in the shared connections that establish human meaning. If these connections are linguistic, they are predicated on a non-linguistic experience of being in the world, which is first and foremost the experience of embodiment, but where the body is also the locus of know-how and practical knowledge. To care for Mr McNulty, we may have to draw upon our knowledge of his previous history as a builder in order to interpret his current behaviour and learn how to talk with him (Widdershoven & Berghmans 2006). To understand Mrs Barksdale’s irritable gestures in response to any attempts to feed her artificially, we may have to accept that she is showing us the remnants of her autonomy now inscribed in bodily form: ‘Although the body in severe dementia increasingly shows dysfunctions, it still remains a lived body and a body in which previous forms of autonomy have been inscribed’ (Dekkers, 2010, p. 258).
But in a less dramatic form, the foundations for good care emphasise the importance of knowing the people we care for in as holistic a fashion as possible. We are back to ‘being with’ as a priority before ‘doing to’. And we are back to the importance of the intuitive, the expert clinical judgement based on feelings akin to an aesthetic sense of what is right.
Conclusion People with severe dementia pose a problem and provide a solution. The problem is that the loss of language suggests an undermining of personhood. The solution comes from the realisation that meaning is shared and is located in the context which surrounds linguistic discourse. So personhood, or selfhood, is maintained in a variety of ways in dementia (Sabat, 2001; Stokes, 2008). But we also have a philosophical approach which gestures at a practical and humane way to tend to people when they have severe dementia. For there is the potential to feel their meaning, even when it cannot be spoken. In this sense, understanding anyone is more like an aesthetic judgement than a cognitive act. The philosophy suggests that our engagement with the person is one that is, because of our standing as human beings in the world, through and through. It involves, potentially at least, everything about us, not just our rationality or consciousness. And there are grounds for thinking of it as being primarily an embodied engagement. For, as Maurice Merleau-Ponty (1908–1961) wrote: ‘The body is our general medium for having a world’ (Merleau-Ponty, 1962, p. 169). Acknowledgement I am enormously grateful to the editors of this volume for their careful comments and useful advice during the preparation of this paper. The deficiencies remain my own.
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Notes 1. As explained in the text, these vignettes are fictitious examples drawn from clinical experience. The names are also concocted, but – to continue the theme – come from characters in The Wire, to which, however, the vignettes bear no resemblance whatsoever! 2. I say this having had the experience of quoting Brock’s (1988) view that people with severe dementia ‘approach more closely the condition of animals than normal adult humans in their psychological capacities’ in presentations to health and social care workers. 3. The notion of ‘aesthetic’ judgements (or sense) crops up a number of times in the rest of this paper. It is usually used these days in connection with the philosophy of art and refers to appreciation of the beautiful. I do not wish to lose this meaning (because it gestures at the importance of the arts as therapy for, and as ways to understand, people with dementia), but I also intend the older meaning, which suggests judgements pertaining to the senses. Think, for example, of the poet John Keats writing: ‘O for a Life of Sensations rather than of Thoughts’ (and see Hughes 2011, p. 29 ff. for further discussion).
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Stokes, G. (2008). And still the music plays: Stories of people with dementia. London, UK: Hawker Publications. Taylor, C. (1995). Philosophical arguments. Cambridge MA: Harvard University Press. Widdershoven, G. A. M., & Berghmans, R. L. P. (2006). Meaning-making in dementia: A hermeneutic perspective. In J. C. Hughes, S. J. Louw, & S. R. Sabat (Eds.), Dementia: Mind, meaning, and the person (pp. 179–191). Oxford, UK: Oxford University Press. Wittgenstein, L. (1968). Philosophical investigations trans. G. E. M. Anscombe). Oxford, UK: Blackwell (First edition 1953; second edition 1958; third edition 1967).
Author’s Biography Julian C. Hughes is a consultant in Psychiatry of Old Age at Northumbria Healthcare NHS Foundation Trust and honorary professor of philosophy of ageing in the Institute for Ageing and Health, Newcastle University. His research is on philosophical and ethical issues in connection with ageing and dementia. He studied Philosophy, in Oxford and Warwick, and Medicine in Bristol. His books include: Dementia: Mind, Meaning, and the Person (2006), Palliative Care in Severe Dementia (2006), Ethical Issues in Dementia Care: Making Difficult Decisions (2006), Supportive Care for the Person with Dementia (2010), Thinking Through Dementia (2011) and Alzheimer’s and Other Dementias (2011).
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‘Y’ feel me?’ How do we understand the person with dementia?
Dementia 12(3) 348–358 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213479597 dem.sagepub.com
Julian C Hughes Newcastle University/Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, UK
Abstract As dementia progresses problems of understanding emerge. Eventually spoken language can be lost. And yet, even into the severer stages of dementia, close carers can often understand the person in a variety of ways. Loss of language is not just a practical problem. It raises philosophical issues too. As Wittgenstein suggested, understanding entails grasping a form of life. Our understanding of agitated, pacing behaviour is similarly based on a unique history, on culture, on context. Hence, a philosophy gestures at the foundations of care. There is the potential to feel the person’s meaning, even when it cannot be spoken. This is not simply by means of an alternative to language. The philosophy suggests that our engagement with the person is through and through. Understanding anyone is more like an aesthetic judgement than a cognitive act. Keywords aesthetic, dementia, embodied, meaning, personhood
Introduction In the cult television series The Wire, the Baltimore African-American drug dealers frequently, after an explanation or direction, use the expression ‘Y’ feel me?’ in an interrogative fashion to mean something like ‘I wonder whether you understand what I’m saying to you?’. It is a useful and philosophically interesting expression. It could, after all, be replaced by simply asking ‘Do you understand?’; but there is often more going on than simple understanding of the uttered words. Not that understanding is simple: far from it! But we could construct a simple model of understanding according to which to understand ‘p’ means to understand a particular proposition, which in turn requires that the parts of the proposition are understood. Thus, to understand ‘The cat sat on the mat’ means to know that ‘The cat’ refers to the allergenic hairy four-legged creature and so on. The trouble is that Corresponding author: Julian C Hughes, Psychiatry of Old Age Service, Ash Court, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH, UK. Email: [email protected]
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in The Wire what has to be understood is often what is not said: it has to do with the history, culture and social context of ‘the game’ (i.e. drug dealing). Or, perhaps, it cannot be said, because it is too dangerous to speak (because ‘the game’ also includes murder). These things are there, gestured at by the interrogative, but not articulated in propositional form. They are felt, not said. Another way to put this is to point to the context which allows understanding. It is not just a grasping of the individual word meanings. The philosopher Ludwig Wittgenstein (1889–1951) put it this way: ‘To understand a sentence means to understand a language. To understand a language is to be master of a technique’ (Wittgenstein 1968, I¨199).
The first thing to notice about this is that to understand a sentence is not (simply) to understand the words in the sentence. It is something much broader. It means that you have grasped, more or less, a language. Comprehension means that a whole lot of other things are in place: some sort of understanding of grammar for instance, of how the subject is linked to the object by the verb and so on. And then Wittgenstein points out that what you have acquired, in understanding a language, is a way of doing something in the world. It is not simply an internal mental computation by which a word is linked to an object. It is an outer action, a technique, performed in the world between people. To understand my meaning is to grasp something. This is not to be thought of simply as a metaphysical grasping, it is not solely a mental event, it is a performance in the world; and, of course, this is the human world of sensate bodies. When you really understand something I’ve said, ‘Y’ feel me’. Or, at least, we have grasped something together: you feel my meaning, you don’t simply compute something in your head. In this paper, I wish to explore how these lines of thought might be relevant to our understanding of people with dementia. We need to start by thinking of real people with dementia and to consider the practical problems associated with communication, especially in severe dementia. I shall do this by presenting two vignettes, both drawn from clinical experience. Both are fictitious, but I hope the features they present and issues they raise will be readily recognisable by practitioners in the field of dementia. The philosophy, which I shall then consider, explains and underpins approaches to health and social care for people with dementia, which seem to be at least humane. This mixture of philosophy and practical experience, I contend, should provide us with deeper understanding of the issues, which arise in connection with looking after people with severe dementia; understanding, however, which is not ‘just’ theoretical, but which is linked to an imperative in terms of how we should act. There are two points to add before presenting the vignettes. First, the reader should note the inevitable importance of the human body. Our contact with, and therefore our understanding of, people with dementia is inevitably embodied: we understand not just mentally, but through our bodily interactions. This is an issue to which I shall return. Secondly, although my perspective is that of a clinician (more specifically, that of a medical doctor specialising in psychiatry of old age), the implications of my philosophical comments should be, I suggest, widely applicable: not solely to those who also work in health and social care, but to all those (families, researchers, designers, entertainers, lawyers and so on) who meet, care for, or whose work might affect the lives of people with dementia. The philosophical issue of personhood, that is, has implications for us all.
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Mr McNulty1 For a number of years now Mr McNulty, who has a diagnosis of mixed vascular and Alzheimer’s dementia, has tended to pace the corridors of the nursing home in which he lives. He no longer recognises his sister when she visits. He talks incessantly whenever anyone is near. He uses proper words, but overall they make no sense. It is not possible to have a coherent conversation with him, although there are snatches of sense. ‘It’s going to be a good one’, he might say; but just as you think he is talking of the weather, he adds, ‘You can’t do it on your own’. He often stops to bang the walls, which he does with a good deal of force, and if you ask him if he is all right he turns and says: ‘You’re not important, I’m not going to, you go away’. At times Mr McNulty seems angry and irritable, whatever is said to him. At other times, he smiles and seems very friendly. He will often walk around holding someone’s arm for considerable periods of time.
Mrs Barksdale Her husband will tell you that Mrs Barksdale has had signs of her Alzheimer’s disease for almost a third of their married life. They are approaching their 60th wedding anniversary and he recalls that the first evidence of memory problems appeared about 20 years ago when she got lost on a holiday. Mrs Barksdale is now confined to bed. She is totally dependent for all aspects of personal care. Mr Barksdale comes in to feed her lunch every day, but this is becoming more difficult because of the risk of choking. At other times of the day, Mrs Barksdale simply lies in bed. The nurses have set up a kaleidoscopic projection, which plays on the ceiling above her bed, and she seems to be engaged by this. The radio in her room is also tuned to classical music, which it is known she used to enjoy. When you approach her bed, her eyes will eventually turn in the direction of her visitor. She will utter the occasional soft noise in response to gentle words spoken to her, but her vocalisations are completely incomprehensible and mostly she just stares at the moving coloured shapes on the ceiling.
What’s the problem? Seasoned clinicians or care workers might read the vignettes about Mr McNulty and Mrs Barksdale and regard them as no more than run-of-the-mill, rather than as cases which might cause philosophical concerns. I shall now suggest two concerns (one philosophical and one clinical), which those working in the field might readily dismiss, and I shall present caricatures of the grounds they might give for doing so. But I shall go on to highlight what I perceive to be a deeper problem (to do with the foundations of care) and argue that it points in the direction of concerns about which correct thinking should underpin and encourage good practice in dementia care. The first concern is a philosophical problem, which is now quite familiar (Hughes, Louw, & Sabat, 2006). It is about the standing of Mr McNulty and Mrs Barksdale as persons. The philosophical problem stems from the thought that it is memory or consciousness that makes us the persons that we are (Hughes, 2001). More sophisticated treatments of this problem would distinguish between quantitative (numerical) and qualitative accounts of personhood: is the problem to do with the person not being the same in the sense of not having the same properties (not being the same quantity), or not
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being the same in the sense of not being identifiably the same (not having the same qualities)? Numerically speaking, my desk is the same desk if today I paint it as it was yesterday; but qualitatively it is different (McMillan, 2006). The same distinction can be applied to human beings. I can identify myself over time by my likeness to the person depicted in my passport, who has a certain general appearance. If I deviate too far from the picture given in my passport, my claim to be the same person might be challenged. To use the distinction derived from the philosophy of Paul Ricoeur (1913–2005), and elaborated in connection with dementia by Radden and Fordyce (2006), my numerical properties have enough sameness for me to have this much idem identity (i.e. what I am is the same); but in terms of myself (my ipse identity or selfhood), I might have changed radically from the person depicted in the passport (e.g. I might now eat toad in the hole and support Newcastle United Football Club). The thought that memory or consciousness is critical for personhood can be used to argue that someone (like Mr McNulty) with dementia cannot be regarded as the same person over time because the key property, which supplies idem identity in terms of personhood, has vanished. Alternatively, it might be argued that the person with severe dementia (like Mrs Barksdale) has changed so radically in a qualitative sense (in terms of ipse selfhood) that either she cannot be regarded as the same person or she cannot be regarded as a person at all. Such positions have been suggested at various times, but my aim is not to rehearse old arguments (see instead Hughes et al., 2006). My guess is that clinicians and care workers would not be too impressed by such arguments. They know that Mr McNulty is quite a character and Mrs Barksdale needs lots doing for her, but is a lovely person. In both cases the question about the standing of the person qua person will seem largely irrelevant. On the whole, the suggestion that either Mr McNulty or Mrs Barksdale might not be a person at all, but just a sentient being akin to any other animal, would probably seem either laughable or insulting.2 Abstract theories about personhood might, I guess, seem some way from the coalface of changing, feeding and toileting people with severe dementia. The second problem is a clinical problem to do with communication. Mr McNulty will respond to you, but his speech makes no real sense; you cannot enjoy a sensible conversation with him, because his responses are always non-sequiturs. More importantly, if he seems distressed and you are worried about him you cannot just ask him what the problem is. For Mrs Barksdale the difficulty is even more marked, because she does not speak at all. So it is impossible for her to tell you anything. In addition, it makes it very difficult – for Mr McNulty as well as for Mrs Barksdale – to know what to say to them, because there is no true conversation. It is partly a question of embarrassment: when you say things to people who either respond in an irrelevant manner or not at all, it is difficult not to feel self-conscious. More importantly, you would like to say the right thing, the one that will in some way be helpful rather than the reverse. The absence of verbal communication seems potentially on first blush to threaten good care in a number of ways. Again, I believe many clinical and social carers of people with dementia would be sympathetic to the problems around communication, but would dismiss them as simply showing a lack of experience. I think of the care assistant I saw the other day in a privately run nursing home who, having just finished feeding a woman very like Mrs Barksdale, then smoothed her hair, told her how lovely she looked and kissed her a couple of times on the forehead. Or I think of the nurse in a National Health Service (NHS) unit whom I witnessed taking the hand of a man who seemed to be distressed,
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very like Mr McNulty, and walking with him whilst engaging in a perfectly natural-sounding conversation, albeit one that lacked coherence in direction and theme. So, my feeling is that experienced workers in the field of severe dementia would dismiss both the philosophical and the clinical problems raised by these cases. I have caricatured these dismissals in terms of scepticism about the relevance of philosophy and appeals to experience. It is worth noting, however, that in the examples of good care, which I have just given, the instinctual interactions of the care assistant and the nurse with the persons with dementia were not only sensate, but also relied on embodied understanding and reaction. But now I wish to point to a deeper problem. It is not so obvious as a problem, but I feel it is foundational. Indeed, it is a problem about the foundation of clinical practice. Mr McNulty raises the problem in that he does not allow the type of engagement which normally serves to sanction clinical contact between the carer and the cared for. If you ask him ‘Can I help you?’ he is unlikely to say either ‘yes’ or ‘no’. If you think he has a problem and ask him what it is, he is unlikely to tell you, or he may even be abusive. Meanwhile, albeit Mr McNulty can still demonstrate his immediate wishes via his actions, Mrs Barksdale seemingly lacks any semblance of agency (but see below). Her total dependency means that her care is based on considerations beyond any wishes, beliefs or values that she may or may not hold. The foundations for her care, I feel, are brute. One immediate response to this is to say that I am over looking capacity legislation. In England and Wales the relevant statute law is the Mental Capacity Act 2005. This seems to settle matters nicely, in that we can say that Mr McNulty and Mrs Barksdale both lack capacity in various ways and so decisions must be made in their best interests, which would include attention being paid to any advance care plans and so forth. The foundations of practice in the setting of incapacity, therefore, are simply set by the relevant law. Rather than overlooking capacity legislation, however, I would contend that we should look both through it to its foundation and into it to its application. The foundations are something philosophically brute and the application of the laws requires an ethical approach not given in the law itself, albeit hopefully suggested by it. To understand this we can go back to the caricatured earlier responses. We can dismiss the philosophy of personhood as being too theoretical, but family carers are known to say things like ‘He’s not the person I married’ or ‘She stopped being my wife the moment she moved into this home’. And we cannot, despite the examples I have given above, pretend that dementia care is always what it should be: examples of actual abuse have hit the headlines in the UK in the last year or so; but we know that poor quality dementia care has been ubiquitous for many years and not just in the UK. Tom Kitwood’s mission to raise the standards of dementia care was driven by this very fact: care needed to be person-centred precisely because the standing of the person as such seemed to have slipped from view (Kitwood, 1997). Fifteen years after Kitwood’s death we cannot pretend that things are considerably better, despite strenuous efforts and examples of good practice. Understanding the basis of personhood is not irrelevant to the foundations of good practice in dementia care; and, similarly, it is persons as such who are afforded the protection of the law. Personhood is a philosophical concept and one which underpins legal theory; but it is more than conceptual because the standing of the person is a brute fact of health and social care as well as legal practice. What if, instead of looking to the underpinning basis of law, we look towards actual practice within the context of the law? What if Mr McNulty were to develop a chest infection and a question about treatment with an antibiotic were to arise? What should be done when Mrs Barksdale’s swallowing problems become worse and we have to act in her best
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interests and either feed her by mouth in the knowledge that she might develop an aspiration pneumonia or consider artificial feeding? The law will give us direction here, but there remains the requirement that at some point an evaluative decision is required. In the absence of the person him or herself making a capacitous decision, even in the face of advance care planning, an ethical decision is required: is this the right or wrong decision? Was this absolutely what Mr McNulty intended by his advance refusal of treatment? Can we be sure that this is what Mrs Barksdale would have wanted under these specific conditions (even if her husband says it is)? The problem is one to do with communication and it is true that experience will help, but the experience has to be of the right sort. We are talking, after all, about ethically problematic decisions. So, at the very least, we require an ethically nuanced debate about what might be best. Again, I want to say, we are nudged in the direction of the foundations of practice. For the issue is one of really knowing the person, of having a feel for what he or she wants and would have wanted. That comes from ‘being with’ them (and with their relatives) and not simply from ‘doing to’ them. So experience is vital, but it is not the experience of a taskoriented regime that is required. Nor is it the experience of paternalistic decision-making, even if it is beneficent in its intent. What is required is some sort of deeper engagement. It is, to cut to the chase, to do with feelings not with words. So far, based on the cases of Mr McNulty and Mrs Barksdale, I have suggested a philosophical problem to do with personhood, which I initially dismissed as too theoretical, and a clinical problem to do with communication, which I dismissed as being ‘just a matter of experience’. But I have subsequently argued that both the philosophical and the clinical problems are foundational in that they point towards what really underpins good practice in dementia care: the brute facts of personhood and the need for a deeper engagement based on communication at the level of feelings.
Language users To understand the person with dementia we have to consider the brute facts of personhood. Now, one thing I wish to suggest, but not argue for, is that human life – the life of human persons – is characterised by language. We need, therefore, to see what this implies. One thing it implies is the importance of meaning. I agree with McCabe (2005, p. 67): ‘It is characteristic of human animals to deploy symbols, to live in the structure we can broadly call language. What we call having a ‘mind’ is having the capacity to live in such structures, structures which, like the nervous system, or the genetic programme of an animal species, provide for meanings. Language is the nervous system of the human community. It is the context for meaning’.
Such thoughts return us to our opening considerations around understanding. But before we philosophise, we should again recognise the clinical problem and its implications, namely that, in dementia, language becomes seemingly meaningless and is eventually lost. What then of personhood? Well, the argument I shall pursue is that to understand language is to take part in a form of life. As Wittgenstein (1968, I¨241) said, when people agree in the language they use, this ‘is not agreement in opinions but in form of life’. Moreover, I wish to say that participating in the human form of life can be conceived as an aesthetic act as much as a cognitive one: it is on the feeling side as much as on the thinking side.3 Of course, the fully functioning human being feels and thinks. The mistake is to conceive human thought to take place without feeling, or human feeling without thought. And this is a mistake because it is
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the whole human person who thinks and feels and he or she does this in an embodied fashion. As Taylor (1995, pp. 170–171) states: ‘Our understanding is itself embodied. That is, our bodily know-how, and the way we act and move, can encode components of our understanding of self and world . . . My sense of myself, of the footing I am on with others, is in large part also embodied’.
From the broad perspective of the human person, we understand a language not by understanding individual words, not by understanding sentences even, but by grasping the whole complex context in which language has meaning. And that context is shared. It is inter-personal. The human-person-perspective reflects our standing, and that of people with dementia, as beings-in-the-world (Hughes, 2011). But our embeddedness in this context of meaning is an embodied one in which gestures have significance. As Kontos has argued (2004): ‘Language has inner content but the meaning of words is not entirely contained in the words themselves; rather, their meaning emerges from and is influenced by the contextual discourse. During interactions, words assume a gestural significance . . .’.
There is something that is understood by those close to a person with dementia, which may not be immediately apparent to others, which is not necessarily conveyed by words but by the carer interacting with the whole surround, grasping the gestures and grimaces of interpersonal space, by the feelings that emerge between people, which in part will reflect deep engagement with the person’s narrative history and psychosocial, spiritual and cultural background. Understanding a person, then, is like understanding a language. But just as understanding a language is neither solely, nor mainly, a matter of understanding how individual words connect to individual meanings, so too understanding a person is not just a matter of understanding what he or she says. Rather, it is a matter of sharing a form of life. So, even if the person lacks coherent speech (like Mr McNulty) or lacks speech altogether (like Mrs Barksdale), we can still establish meaningful connections. These connections might depend upon the interpretation of gestures, looks, grimaces, mien, nuanced movements and so forth, but might also involve techniques and attitudes (Allan & Killick, 2010). The meaning is not, of course, given by words, but by context. In the context of dementia it becomes obvious that judgements will be required. The judgements are interpretations involving the whole field: anything and everything about the person that might be helpful. Much of this will be intuitive. But judgements rely on and imply background (mostly tacit) agreement, for instance that the world is seen in this particular way (Hughes & Ramplin, 2012). Just as laws require evaluative decisions for them to be put into effect, decisions reflecting shared values, so too communication requires background judgements to be shared in order to sustain meaning. This is what we mean by the interpretation of the law. So, too, this gesture means such-and-such, but the consequence of that is so-and-so. Thus we can say, with more or less certainty depending on our level of expertise, that this person is in pain, which in turn means certain things in terms of our response (i.e. at the very least that we should consider pain relief, but also that we show concern in this or that way). We even say, for instance, that we can feel the other person’s pain. The notions of judgement and interpretation help to make the link with aesthetic appreciation. Wittgenstein (1968, I¨527) wrote: ‘Understanding a sentence is much more akin to understanding a theme in music than one may think’.
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And a little later (Wittgenstein 1968, I¨533): ‘Ask yourself: How does one lead anyone to comprehension of a poem or a theme? The answer to this tells us how meaning is explained here’.
His point is that we do not explain music or poetry by pointing to the notes or by simply giving definitions of words, but by making connections with other things in our shared lives. Perhaps we point to a line somewhere else, or to another piece, where there seems to be something similar; perhaps we show what we feel at this point in the piece by a movement (of assertion or excitement) or by a facial expression (signifying joy or despair); perhaps we explain it by pointing to something in the piece’s history; perhaps we understand it by reference to something in our own lives; and so on. This is not (at least not solely) a matter of explaining terms by definition – and in the case of music this cannot be done anyway – it is a matter of setting the piece in a meaningful context, so that it now has meaning for the person concerned. In part, the person will have to do this for him or herself on the basis of the already mutually shared background. But it is certainly not all cognitive work. To understand a language is to understand more than simply what the words stand for; and so too with music, poetry and people. Wittgenstein used the term ‘language-game’ to describe the range of new types of language, the multiplicity of uses we might conceive for language; and the term ‘language-game’ was ‘meant to bring into prominence the fact that the speaking of language is part of an activity, or of a form of life’ (Wittgenstein 1968, I¨23). Back on the streets of Baltimore (at least as depicted in The Wire), the drug gangs play ‘the game’, which even has its own language, and to understand which we need to draw on shared forms of life where the notions of family, trust, loyalty, territory, debt, duty, honour all have a role to play, even if the virtues of compassion, honesty, justice and temperance are sadly lacking. Wittgenstein (1968, I¨535) asks: ‘What happens when we learn to feel the ending of a church mode as an ending?’.
The answer is that we have acquired a way of being. It is not that we have learned some fact. It is not that a theorem or equation has been mastered. It is that we see the world, or hear it, in some new and particular way. We can now make the judgement that the piece has ended. We understand the shape of the music. We feel the world thus and so. We have developed an aesthetic sense of things. Moreover, this feeling is now, for us, not just a matter of cognitive understanding, it is also an embodied act. The music induces in me a feeling of completion, of resolution, of closure. I understand the music when I have this feeling, just as I understand a language when I react in this particular way. And I can understand the person with dementia when I open myself up to the possibility of engaging at the level of feeling.
The foundations of care It is characteristic of human persons that we are language-users, but a brute fact about people is that we are embodied. As we have seen, language – the way we communicate – reflects a form of life that includes activity in the context of meaningful relationships, which are also typically embodied. There is a link, then, between our embodied
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situatedness in a particular context, which is given by personal narrative, family history, culture and so forth, and the need for deeper engagement in terms of communication at the level of feelings. The link is supplied by meaning, which has to be seen as something that occurs between our bodies in public space, not solely in our heads (Hughes, 2008). To grasp my meaning, to understand me, therefore, is also a matter of feeling. If cognitive functions are lost, there is nothing to say that the capacity to feel is also lost. Hence, dementia care is a matter of aesthetic judgement as much as it is a scientific, pharmacological, cognitive, psychological or social endeavour. The foundations of care rest in the shared connections that establish human meaning. If these connections are linguistic, they are predicated on a non-linguistic experience of being in the world, which is first and foremost the experience of embodiment, but where the body is also the locus of know-how and practical knowledge. To care for Mr McNulty, we may have to draw upon our knowledge of his previous history as a builder in order to interpret his current behaviour and learn how to talk with him (Widdershoven & Berghmans 2006). To understand Mrs Barksdale’s irritable gestures in response to any attempts to feed her artificially, we may have to accept that she is showing us the remnants of her autonomy now inscribed in bodily form: ‘Although the body in severe dementia increasingly shows dysfunctions, it still remains a lived body and a body in which previous forms of autonomy have been inscribed’ (Dekkers, 2010, p. 258).
But in a less dramatic form, the foundations for good care emphasise the importance of knowing the people we care for in as holistic a fashion as possible. We are back to ‘being with’ as a priority before ‘doing to’. And we are back to the importance of the intuitive, the expert clinical judgement based on feelings akin to an aesthetic sense of what is right.
Conclusion People with severe dementia pose a problem and provide a solution. The problem is that the loss of language suggests an undermining of personhood. The solution comes from the realisation that meaning is shared and is located in the context which surrounds linguistic discourse. So personhood, or selfhood, is maintained in a variety of ways in dementia (Sabat, 2001; Stokes, 2008). But we also have a philosophical approach which gestures at a practical and humane way to tend to people when they have severe dementia. For there is the potential to feel their meaning, even when it cannot be spoken. In this sense, understanding anyone is more like an aesthetic judgement than a cognitive act. The philosophy suggests that our engagement with the person is one that is, because of our standing as human beings in the world, through and through. It involves, potentially at least, everything about us, not just our rationality or consciousness. And there are grounds for thinking of it as being primarily an embodied engagement. For, as Maurice Merleau-Ponty (1908–1961) wrote: ‘The body is our general medium for having a world’ (Merleau-Ponty, 1962, p. 169). Acknowledgement I am enormously grateful to the editors of this volume for their careful comments and useful advice during the preparation of this paper. The deficiencies remain my own.
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Notes 1. As explained in the text, these vignettes are fictitious examples drawn from clinical experience. The names are also concocted, but – to continue the theme – come from characters in The Wire, to which, however, the vignettes bear no resemblance whatsoever! 2. I say this having had the experience of quoting Brock’s (1988) view that people with severe dementia ‘approach more closely the condition of animals than normal adult humans in their psychological capacities’ in presentations to health and social care workers. 3. The notion of ‘aesthetic’ judgements (or sense) crops up a number of times in the rest of this paper. It is usually used these days in connection with the philosophy of art and refers to appreciation of the beautiful. I do not wish to lose this meaning (because it gestures at the importance of the arts as therapy for, and as ways to understand, people with dementia), but I also intend the older meaning, which suggests judgements pertaining to the senses. Think, for example, of the poet John Keats writing: ‘O for a Life of Sensations rather than of Thoughts’ (and see Hughes 2011, p. 29 ff. for further discussion).
References Allan, K., & Killick, J. (2010). Communicating with people with dementia. In J. C. Hughes, M. LloydWilliams, & G. A. Sachs (Eds.), Supportive care for the person with dementia (pp. 217–225). Oxford, UK: Oxford University Press. Brock, D. W. (1988). Justice and the severely demented elderly. Journal of Medicine and Philosophy, 13, 73–99. Dekkers, W. (2010). Persons with severe dementia and the notion of bodily autonomy. In J. C. Hughes, M. Lloyd-Williams, & G. A. Sachs (Eds.), Supportive care for the person with dementia (pp. 253–261). Oxford, UK: Oxford University Press. Hughes, J. C. (2001). Views of the person with dementia. Journal of Medical Ethics, 27, 86–91. Hughes, J. C. (2008). Being minded in dementia: Persons and human beings. In M. Downs, & B. Bowers (Eds.), Excellence in dementia care: Research into practice (pp. 119–132). Maidenhead, UK: McGraw Hill, Open University Press. Hughes, J. C. (2011). Thinking through dementia. Oxford, UK: Oxford University Press. Hughes, J. C., Louw, S. J., & Sabat, S. R. (Eds.) (2006). Dementia: Mind, meaning, and the person. Oxford, UK: Oxford University Press. Hughes, J. C., & Ramplin, S. (2012). Clinical and ethical judgement. In C. Cowley (Ed.), Reconceiving medical ethics (pp. 220–234). London, UK and New York, NY: Continuum. Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham, UK: Open University Press. Kontos, P. C. (2004). Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing and Society, 24, 829–849. McCabe, H. (2005). The good life: Ethics and the pursuit of happiness. London, UK and New York, NY: Continuum. McMillan, J. (2006). Identity, self and dementia. In J. C. Hughes, S. J. Louw, & S. R. Sabat (Eds.), Dementia: Mind, meaning, and the person (pp. 63–70). Oxford, UK: Oxford University Press. Merleau-Ponty, M. (1962). Phenomenology of perception (trans. C. Smith). London, UK and New York, NY: Routledge. First published as PhO˜nomO`nologie de la Perception by Gallimard, Paris (1945). Radden, J., & Fordyce, J. M. (2006). Into the darkness: Losing identity with dementia. In J. C. Hughes, S. J. Louw, & S. R. Sabat (Eds.), Dementia: Mind, meaning, and the person (pp. 71–88). Oxford, UK: Oxford University Press. Sabat, S. R. (2001). The experience of Alzheimer’s disease: Life through a tangled veil. Oxford, UK: Blackwell.
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Author’s Biography Julian C. Hughes is a consultant in Psychiatry of Old Age at Northumbria Healthcare NHS Foundation Trust and honorary professor of philosophy of ageing in the Institute for Ageing and Health, Newcastle University. His research is on philosophical and ethical issues in connection with ageing and dementia. He studied Philosophy, in Oxford and Warwick, and Medicine in Bristol. His books include: Dementia: Mind, Meaning, and the Person (2006), Palliative Care in Severe Dementia (2006), Ethical Issues in Dementia Care: Making Difficult Decisions (2006), Supportive Care for the Person with Dementia (2010), Thinking Through Dementia (2011) and Alzheimer’s and Other Dementias (2011).
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