Chapter 24 – Understanding the Person with Dementia




Abstract




This chapter considers the notion of personhood and shows how it offers a robust conceptual underpinning to person-centred care. We use a fictitious case vignette to clarify the nature of personhood. Although the vignette is fictional, it is based on an amalgam of real and made-up cases. We believe it would seem a familiar story to most people who know or care for people with dementia. We contend that we need a broad view of personhood, which we feel is best captured by regarding the person as a situated embodied agent (SEA), which will be explained. Using this characterization, we aim to demonstrate how it can underpin the notion of person-centred care and show the practical implications of this in connection with our fictitious case. The broad view supports a specific approach to people with dementia, but also shows the challenges that face the implementation of good-quality dementia care.





Chapter 24 Understanding the Person with Dementia A Clinico-Philosophical Case Discussion


Julian C Hughes and Aileen Beatty



Introduction


This chapter considers the notion of personhood and shows how it offers a robust conceptual underpinning to person-centred care. We use a fictitious case vignette to clarify the nature of personhood. Although the vignette is fictional, it is based on an amalgam of real and made-up cases. We believe it would seem a familiar story to most people who know or care for people with dementia. We contend that we need a broad view of personhood, which we feel is best captured by regarding the person as a situated embodied agent (SEA), which will be explained. Using this characterization, we aim to demonstrate how it can underpin the notion of person-centred care and show the practical implications of this in connection with our fictitious case. The broad view supports a specific approach to people with dementia, but also shows the challenges that face the implementation of good-quality dementia care. Discussion of this case shows both the relevance of philosophy for clinical practice and the ways in which clinical practice can enrich the debates of philosophy.


As is well known, the prevalence of dementia is set to rise inextricably with the ageing of the population.1 Person-centred care is the watchword of dementia services.2, 3 But it is rarely the reality.4 Indeed, in an Afterword to the second edition of Kitwood’s seminal book on personhood, now called Dementia Reconsidered, Revisited: The Person Still Comes First, Kate Swaffer, an Australian dementia activist, who lives with a diagnosis of dementia, states: ‘I believe Kitwood’s Person Centred Care has not generally been translated into practice, and instead has mostly been a tick-box in an organization’s paperwork.’5 Furthermore, despite the alleged ubiquity of person-centredness, we continue to see a variety of scandals affecting people with dementia, especially those in long-term care.6, 7 One researcher, Dr Penny Rapaport, was quoted as saying, in response to findings which suggested that abuse was taking place in 99% of care homes,8 ‘Carers can’t just be told that care should be person-centred – they need to be given the support and training that will enable them to deliver it.’7


The question is sometimes raised, therefore, as to whether the mantra of person-centred care is empty. Alternatives to person-centred care, such as relationship-centred care, have been suggested.9 However, the extent to which these alternatives represent substantial conceptual differences can be questioned.10 It may be that the problems in terms of realizing person-centred care in practice reflect deeply conceptual issues, which we hope to gesture at in this chapter.


Our aim is to unpack the notion of personhood and show how it does indeed offer a robust conceptual underpinning to person-centred care. But, in doing so, we also show why, despite its acceptance at the level of policy,11, 12, 13 the radical change suggested by person-centred care means that its successful implementation cannot be achieved in a facile manner. Our aim is, by using a fictitious case vignette, to clarify the nature of personhood in order to show that it:




  • underpins the notion of person-centred care;



  • demonstrates practical implications of this;



  • supports a specific approach to people with dementia;



  • shows the radical challenges which face the implementation of good-quality dementia care.


We shall initially outline a characterization of personhood, which we shall then use to comment, first, on the story provided by a case vignette and, secondly, on the interventions devised to manage the behaviour of the fictitious patient. Finally, we shall discuss some of the broader implications of this way of thinking of people living with a diagnosis of dementia.



The SEA View of the Person


In this section we introduce the notion of the person as a situated embodied agent.14 This way of characterizing what it is to be a person (i.e. personhood) was a reaction to more limited views according to which the key characteristic of the person is that he or she is consciously able to remember (see Box 24.1).




Box 24.1 Some philosophers on being a person


John Locke (1632–1704), regarded as the first of the British empiricists (who argued that knowledge comes from the five senses, rather than from reason alone), famously described the person as: ‘… a thinking intelligent being, that has reason and reflection, and can consider itself as itself, the same thinking thing, in different times and places; which it does only by that consciousness which is inseparable from thinking, and … essential to it.’15


David Hume (1711–1776), a Scottish philosopher who continued the tradition of Locke, has been called a ‘bundle theorist’ because he wrote that when he attempted to find himself, he found ‘nothing but a bundle or collection of different perceptions’.16 He wrote: ‘Had we no memory, we never should have any notion of causation, nor consequently of that chain of causes and effects, which constitute our self or person.’16


Derek Parfit (1942–2017) was a contemporary Oxford philosopher, who also admitted to being a bundle theorist: ‘… we can’t explain either the unity of consciousness at any time, or the unity of a whole life, by referring to a person. Instead we must claim that there are long series of different mental states and events – thoughts, sensations, and the like – each series is unified by various kinds of causal relation, such as the relations that hold between experiences and later memories of them.’17


Locke is probably the best example of this approach, although the interpretation of what he said can be questioned.18, 19 But he says: ‘as far as … consciousness can be extended backwards to any past action or thought, so far reaches the identity of that person.’20 Similarly, Parfit (see Box 24.1) has put forward the view that when we speak of persons we are simply speaking of continuing and connected psychological states.21 The key thing for Parfit is ‘psychological connectedness’, which involved ‘psychological continuity’, which is ‘the holding of overlapping chains of strong connectedness’.22


The worry about this sort of view, as far as thinking about people with dementia is concerned, is that it can readily seem to suggest that personhood is lost in severe dementia. In dementia, that is, the ‘chains of strong connectedness’ between conscious states of remembering are increasingly loosened. Thus, we find Dan Brock writing:



I believe that the severely demented, while of course remaining members of the human species, approach more closely the condition of animals than normal adult humans in their psychological capacities. In some respects the severely demented are even worse off than animals such as dogs and horses who have a capacity for integrated and goal directed behavior that the severely demented substantially lack. The dementia that destroys memory in the severely demented destroys their psychological capacities to forge links across time that establish a sense of personal identity across time and hence they lack personhood.23


In response to this rather narrow view of what it is to be a person, the SEA view offers a broader perspective. Whether as embodied beings or as agents, we are always situated or embedded in a context, which is always unique and multifaceted and which itself provides strong scaffolding for the preservation of personhood.


We are situated in our personal histories, which themselves have biological, psychological, social, and spiritual aspects; but we are also situated in particular families, cultures, and historical and geographical settings, and we have our uniquely evolved legal and moral codes, and so forth. Our bodies, too, contribute in an important way to our standing as human persons; and, of course, as persons we act in and on the world in which we live. But we are neither just bodies, nor are we agents simply in the sense that we wish to live autonomous lives. The notion that we are autonomous runs up against our deep rootedness (or embeddedness) in a world of other agents with whom we must interact and interconnect, and with whom we are – we have been and always will be – mutually dependent. Hence, the notion of ‘relational’ autonomy seems more apt.24 But the idea of being embodied is also layered. Thus, the Canadian philosopher Charles Taylor (born 1931) spells out that:



Our body is not just the executant of the goals we frame, … 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.25


Indeed, for Taylor, rather than particular internal mental states, crucial to our understanding of ourselves are the notions of ‘embodied agency and social embedding’.26 These thoughts draw on the work of thinkers such as Wittgenstein, Heidegger, and Merleau-Ponty (see Box 24.2).




Box 24.2 Some philosophers on being human in the world


Ludwig Wittgenstein (1889–1951) emphasized that language is an activity or practice in which we are engaged as a ‘form of life’.27 Our very understanding, according to Wittgenstein, is only possible in a human worldly context: ‘Only in the stream of thought and life do words have meaning’ (Wittgenstein 1981, §173).28


Martin Heidegger (1889–1976), in his seminal work Being and Time, set out how the nature of a human being is precisely that he or she is a ‘Being-in-the-world’. Moreover, a human being is not a disconnected observer of the world, but one whose nature is typified in terms of ‘Being-with’. Heidegger accepts human beings can be indifferent to one another, but from the point of view of being a human being as such, ‘… there is an essential distinction between the “indifferent” way in which Things at random occur together and the way in which entities who are with one another do not “matter” to one another’.29


Maurice Merleau-Ponty (1908–1961) was (like Heidegger) another existentialist who characterized our being as ‘Being-in-the-world’, but considered the special role that our bodies play in presenting us to the world. His philosophy is sometimes summed up by the use of the phrase ‘body-subject’, which suggests both how our subjectivity is embodied and how our bodies are the means by which we gain a subjective purchase on the world: ‘The body is our general medium for having a world.’30


Taylor emphasizes that the person must be seen as ‘engaged in practices, as a being who acts in and on a world’.31 The point to note is that, according to this way of thinking, being engaged with the world is not a mere empirical feature of personhood, that is, it is not that persons just happen to act like this; it is rather that, at a conceptual level, it is constitutive of persons that they must act ‘in and on a world’.


A conception of persons that left out this aspect of our lives would not simply be thin, it would be missing a constitutive feature. That is, our situated embodied agency – our Being-with others, our bodily engagement in and with the world – is not a matter of contingency (see Box 24.3). This is what it is to be a human being: it is precisely to be a person with a certain sort of standing (as a situated embodied agent) with others in the totality of the world.




Box 24.3 Contingent and constitutive accounts


The difference between these sorts of account is crucial. A contingent account of what it is to be a person might have been otherwise. It is contingently true that one of the authors of this chapter was born in London and one was born in Whitehaven. But these facts could have been otherwise. A constitutive account, alternatively, sets out what constitutes being a person: what it is to be a person as such, whatever one’s life history.


If we are giving a constitutive account of what it is to be a person, then person-centred care, if it is to reflect such an account, must engage at this level. As Heidegger might have said (see Box 24.2), if you are indifferent to me, which you can be, if you treat me as a mere object (not as a ‘body-subject’ to use the expression derived from Merleau-Ponty), it is nevertheless a matter of being indifferent and uncaring in the face of our nature as human beings who are, constitutively, mutually engaged, inter-connected, and inter-dependent. It is a contingent fact that you can ignore me or not, but there is no getting around the fact that our situated nature as beings of this sort means that our characteristic response to one another should be that of (what Heidegger called) solicitude.



The SEA View in Practice


So far we have sketched a characterization of personhood. In the next section we shall show how this broad view underpins our understanding of real people, including those with dementia.



Case Vignette: Mr Walker (Part 1)



Life Story


Mr Walker was one of seven children. He had a poor relationship with his father who would frequently drink and become violent. When, as a child, Mr Walker wet the bed his father would become very angry, sometimes hosing him down in the backyard, which was very frightening and humiliating. He adored his mother, however, and was devastated when she died relatively young. He left school when he was 15 years old and worked in the building trade. He progressed to supervisory roles and was known as a tough but fair boss. He married Margaret and they had three children. His family describe him as strict and quick to temper: he was frequently intolerant of his own children, but in later life enjoyed spending time with his grandchildren. He also enjoyed being outdoors, working on his allotment.

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Sep 27, 2020 | Posted by in PSYCHIATRY | Comments Off on Chapter 24 – Understanding the Person with Dementia
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