Interrogating personhood and dementia

ABSTRACT

Objectives: To interrogate the concept of personhood and its application to care practices for people with dementia.

Method: We outline the work of Tom Kitwood on personhood and relate this to conceptualisations of personhood in metaphysics and in moral philosophy.

Results: The philosophical concept of personhood has a long history. The metaphysical tradition examines the necessary and sufficient qualities that make up personhood such as agency, consciousness, identity, rationality and second-order reflexivity. Alternative viewpoints treat personhood as a matter of degree rather than as a superordinate category. Within moral philosophy personhood is treated as a moral status applicable to some or to all human beings.

Conclusion: In the light of the multiple meanings attached to the term in both metaphysics and moral philosophy, personhood is a relatively unhelpful concept to act as the foundation for developing models and standards of care for people with dementia. Care, we suggest, should concentrate less on ambiguous and somewhat abstract terms such as personhood and focus instead on supporting people's existing capabilities, while minimising the harmful consequences of their incapacities.

KEYWORDS:

• Dementia care
• fourth age
• Kitwood
• personhood
• philosophy

Introduction

Dementia has become a matter of growing concern at the global level (Abbott, 2011). At the same time, the term itself has been subject to criticism leading the American Psychiatric Association to replace it with the phrase ‘major neurocognitive disorder’ in its latest edition of the Diagnostic and Statistical Manual (DSM-5; Sachdev et al., 2014). Eschewing the old idea of dementia as ‘madness’ this new terminology instead emphasises the presence of neurocognitive deficits as the condition's defining feature. In the process, significant decline in several distinct domains of cognitive function are identified as the necessary criteria for the diagnosis (APA, 2013). By ‘significant’ is implied deficits interfering with independence in everyday activities; by ‘several domains’ is meant deficits in such areas as learning and memory, in complex attention, language use, executive function, social cognition and perceptual motor skills. Leaving to one side the exact meaning of such terminology, the general thrust is to narrow the diagnostic focus upon ‘neurocognition’ – cognitive deficits attributable to underlying neurological pathology.

Such deficits are not the kind of distinct, localised impairments arising from developmental or acquired pathology such as in the case of learning disorders or stroke. Rather they are impairments of what many might consider the basic infrastructure that supports the individual's agency, awareness, communication, judgement and reasoning. Dementia – or major neurocognitive disorder – by definition then seems to threaten the identity and self-hood of the individual at risk, leading earlier writers to see dementia as ‘the loss of self’ (Cohen & Eisdorfer, 2001) or ‘loss of the person’ (Sweeting & Gilhooly, 1997). Subsequently this perspective has been challenged on two grounds – first that it exaggerates the extent of deficits experienced by people who develop dementia and second because it misrepresents what a person or ‘personhood’ really is (Downs, 1997; Kitwood, 1993; 1997b). The first is a matter of empirical enquiry evidenced in the research of, for example, Fazio and Mitchell (2009); Howorth and Saper (2003) and Clare, Marková, Verhey, and Kenny (2005). Such research is not the focus of this paper which addresses the latter issue of the validity of the concept in dementia.

Writers concerned with improving the care of people with dementia have privileged the importance of ‘personhood’ as the focus of care. Acknowledging the personhood of people with dementia has become one of the defining aspects of policy and practice in dementia care (NICE, 2011; Nuffield Council on Bioethics, 2009; Thomas & Milligan, 2015). For many of those grappling with the issue of personhood and dementia, the work of Tom Kitwood has been a touchstone (Baldwin & Capstick, 2007). In a number of works, Kitwood outlined what he saw as the fundamental denial of personhood in many care settings for people with dementia (Kitwood, 1993; Kitwood, 1997a; Kitwood & Bredin, 1992). He asserted that under the influence of the extreme individualism dominating Western societies, he felt personhood has been reduced to two criteria: autonomy and rationality (Kitwood, 1997a, p. 9). The reduction of personhood to such individualised notions of cognitive competence, he argued, has profound implications for the moral recognition of people with mental impairments. As a counter to this, Kitwood contended that personhood should be conceptualised more broadly, where relationships and moral solidarity are included as foundational principles to overcome ‘a social psychology that is malignant in its effects’ (Kitwood, 1997a, p. 14).

While much has been written since on the importance of maintaining personhood for people with dementia (Innes, Archibald, & Murphy, 2004), Kitwood and other advocates of person-centred care for dementia have not explored the various meanings attached to personhood nor why personhood has been such a difficult status for people with dementia to achieve. In this paper we seek to address the use of the concept of personhood and its utility for dementia care. Our aim is to provide an implicit critique of Kitwood's position and those narratives of care that are derived from it. As part of this argument we will outline how thinking about personhood depends on ideas of agency and autonomy, consciousness and memory, self-hood and personal identity. Each of these concepts has been proposed as constitutive of personhood by various thinkers. Differences between these positions result in multiple possible versions of personhood with the result that some have considered the very idea of personhood ‘logically confused and morally objectionable’ (Sapontzis, 1981, p. 607). His and other writers' critiques (e.g. Beauchamp, 1999; Gordijn, 1999) illustrate some of the difficulties of employing personhood as an essential focus through which to orient the narratives and practices of care for people with dementia.

We are undertaking this task, not to undermine the motivations lying behind person-centred care nor the advocacy of the rights of persons with dementia but rather to avoid what we identify as a potentially unhelpful gap developing between an increasingly professionalised rhetoric of ‘person centred care’ and the everyday social realities facing those who provide such care. There is a danger, we argue, that in placing such a confused and confusing concept as personhood at the centre of any set of organisational practices of care it risks undermining the basic moral imperative¹ of care that is central to society's responses to disabling old age.

The ambiguity of ‘persons’

Responding to what he considered the lack of any theory guiding the care of people with dementia, Kitwood made personhood central to his approach (Kitwood & Bredin, 1992, p. 270). At the outset he made little reference to others' theories of personhood, limiting himself to the view that (a) personhood was not so much given as ‘acquired’ as a result of relationships with others, presaged upon that between infant and mother/caregiver (Kitwood & Bredin, 1992, p. 276) and (b) that being or becoming a person gives an individual moral status, making him or her worthy of moral respect (Kitwood & Bredin, 1992, p. 275). Elsewhere, he makes reference to the work of Martin Buber and his concept of a person as a ‘thou--I’ relationship – referring to the way of individuals relating to another as a ‘pure being’ without any degree of instrumentality (Kitwood, 1997b, p. 5–6). Personhood is presented not as a concept capable of empirical verification (i.e. what are the necessary conditions of personhood and does this individual/species possess some or all of them) but as a statement of moral fact. A person is a ‘thou’; recognising and responding to another as a ‘thou’ is the essence of making that person a person.

Personhood has been used in philosophy long before Buber. Although its conceptual history is complicated the explication of personhood within philosophy has been either a moral or a metaphysical category (Beauchamp, 1999, p. 309). Both are responses to the question ‘what is a person?’ They address issues of identity and by implication, self-hood. While the nature of personal identity and self occupies the domain of metaphysics, in moral philosophy the term is concerned less with personal identity than with the moral standing of persons. Insofar as dementia is a subject of interest to these disciplines, both psychiatry and psychology have approached personhood and dementia in metaphysical terms (e.g. Hughes, 2013; Hughes, Louw, & Sabat, 2006). Law, medicine and theology on the other hand have been more involved with moral considerations of personhood as ‘a foundational concept in many systems of ethics’ informing much medico-legal debate (Dresser, 1995; Dworkin, 1993; Jaworska, 1999; Kittay & Carlson, 2010; Post, 2006).

A key problem addressed by Jens Ohlin is whether the concept of the person is a necessary requirement for human rights claims (Ohlin, 2005). Ohlin notes how legal systems place personhood at the centre of human rights. He questions whether the determination of such rights follows from the determination of personhood. Ohlin asks whether it is necessary to prove that this person is indeed a person in order to grant him or her rights and contends that in practice personhood serves as a ‘place marker’, treating those who have rights as persons and those who do not as non-persons. He introduces a further point – what Parfit (2003b) has called the argument from below – namely that it is the necessary constituents of personhood, such as possessing consciousness, and not personhood itself that determine moral status and in turn confer rights. In this formulation, no additional value is conferred by the status of being a person: its constituents have already done the work. Given these differences in approach which treat it as either metaphysical compound or moral status, we aim to consider both aspects of personhood in turn.

Personhood as metaphysical identity

‘Personal identity’ and ‘self’ are concepts that have long been central to metaphysics. In reviewing the sources of the self within the Western intellectual tradition, Charles Taylor has distinguished between an inner ‘me’ and an outer ‘world’ made up of objects and things that are not ‘me’. This conceptualisation constitutes ‘a historically limited mode of self-interpretation … dominant in the modern West’ (Taylor, 1992, p. 111). Whether or not this is the case, the history of this distinction is taken as that formulated by Rene Descartes when he distinguished between knowledge gained from within – the cogito – and knowledge gained from the without – ‘the material world and its quasi mechanical workings’ (Taylor, 1992, p. 156). Descartes asked whether it was possible to understand the nature of self and personal identity without resorting to forms of external knowledge based upon the material body. One solution to this problem was to treat ‘self’ and ‘personhood’ as entities that could not be reduced to, or assimilated within the category of material bodies. Instead such capacities were seen as existing in a contingent relationship with the body, a relationship that was irreducible to what Strawson has called ‘basic’ or ‘primary’ particulars – namely matter (Strawson, 1971). If self and personal identity are seen as the constituents of ‘persons’, one way of understanding who or what a ‘person’ is, can be found in the answer to whether he or she is capable of ‘owning’ (i.e. accepting as mine) his or her states of consciousness. While states of consciousness may vary in time and form, what gives them their unity is the necessity of their being a person's consciousness and not just being a thing sufficient in and of itself.

A doyen of early Enlightenment thinking, John Locke, began his Essay Concerning Human Understanding with a similar goal to that of Descartes, thinking about what constitutes the self or subject, free from any preconceptions. He wanted to establish a more objective understanding of humanity based on the consciousness of a distinct self which he saw as the hallmark of a person. For Locke, personal identity existed because of consciousness, or rather that aspect of consciousness that identifies itself with all previous actions and experiences ‘in what bodies soever they appear or what substances soever that consciousness adheres to’ (Locke, 1975, p. 347). For Locke, the consciousness of identity was all. This position was later challenged by another Enlightenment thinker, David Hume who pointed out that because all consciously entertained ideas, impressions and perceptions are essentially fleeting, consciousness is not continuous but fragmentary. The conscious self must be therefore equally fragmentary. What gave conscious thoughts and experiences their sense of continuity and underlying unity was memory which served as the unifier of what otherwise would be a fragmentary self (or selves). Had people no memory, they would have no means of tying together one impression with another, no knowledge of ‘that chain of causes and effects which constitute our self or person’ (Hume, 1978, p. 261).

Although Hume's position was challenged by Thomas Reid, subsequent enquiries into the identity of persons went into abeyance. The German philosopher Immanuel Kant was the forerunner of a different approach based upon the idea of personhood as status. Unlike Locke and Hume, Kant's conception of a person refers not to its metaphysical components but rather to a universal abstract property that renders human beings ‘ends’ in themselves and treats as irrelevant any biographical or biological elements of distinctiveness – what Radin has called ‘bare abstract rational agents’ (Radin, 1982, p. 967). While such a position may avoid any deeper engagement with a metaphysics of the person, it was an important precursor for viewing personhood in terms of its associated rights' claims. A clearer articulation of this position was made by the idealist philosopher Hegel who outlined the imperative to ‘be a person and respect others as persons’ (Hegel, 1991, p. 35). For Hegel, all such rights are personal and derive from the possession of the rationality of every human being. Given the universality of personhood as a rights holding status for Kant and Hegel, such a status cannot be further qualified by any individual, physical or social particularities.

Echoes of Hume's position reappear in contemporary theories of the self and personhood, particularly those which represent personal identity as a fundamentally ‘discursive’ narrative. In his book ‘Oneself as Another’ Paul Ricoeur distinguishes between two aspects of identity – sameness (idem) and self-hood (ipse) (Ricoeur, 1992, p. 116). Identity as sameness he argues can be seen as the property of substances – equally applicable to human beings or to items of clothing such as suits. Identity as selfhood does not work that way. As Ricoeur puts it, selfhood is a question of whom, not what, we are. Character (or personality), he suggests, lies somewhere between self-sameness and self-hood such that the stability or sameness of character elides ‘who I am’ with ‘what I am’. Self-hood is unequivocally about the former. For Ricoeur, self-hood (who I am) is a matter of what Alistair MacIntyre termed ‘the narrative unity of a life’ (MacIntyre, cited in Ricoeur, 1992, p. 158). This narrative unity, Ricoeur claims, enables identity to link both aspects of identity with one another, creating ‘the permanence, in time, of character and that of self-constancy’ (Ricoeur, 1992, p. 166). Ricoeur treats the self as the central part of our identity as persons alongside our sameness as both ‘matter’ and ‘character’. In that sense the term ‘person’ – or personal identity – includes the idea of self and ‘other’.

Persons and selves

Although Locke, Hume and Ricoeur have treated the person as more or less equivalent to the self, a number of contemporary philosophers have sought to distinguish between them. Remaining the same ‘person’ is not considered equivalent to remaining the same ‘self’. Even if, as Schechtman (1994) has put it, ‘person-identity’ and ‘self-identity’ ought to be co-extensive ‘for a richer and fuller life’, such co-extensivity is neither theoretically nor empirically necessary. Selves can remain the same selves even if they no longer are the same persons (and presumably, vice versa). Is a degree of co-extensivity between personal identity and self-identity therefore required as a criterion of ‘personhood’, in the same way that a degree of psychological continuity is required for personal identity to persist over time? Parfit argues that there are so many obstacles to determining whether or not human beings retain a continuous personal identity that it is more useful to consider this as a matter of degree rather than of categorical presence or absence (Parfit, 1984). For Parfit, there are always degrees of psychological continuity in individuals' lives. These may be more evident in some people's lives than in others and in some periods of people's lives than at others. Personal identity and selfhood are therefore better thought of as matters of degree, Parfit claims, rather than as singular entities, such that individuals are sometimes more and sometimes less ‘themselves’. The self remains continually subject to what could be called degrees of narrative unity.

Rom Harré sees the narrative unity of the self as but one aspect of ‘self-hood’. Two other aspects of self-hood – ‘selves’ 2 and 3 -- depend not on any individual narrativity but upon others' attributions and narratives (Harré, 1991). These other forms of self are either the external attributions of a person's character or the social identities and roles the individual plays (or has played). They represent not positions of subjective agency but social identities or socially constructed selves, reflected in and by the mirror of society (cf. Mauss, 1985; Mead, 1962). While these other forms of self may serve the role of identifying or distinguishing one person from others, they locate responsibility for conferring that identity upon the attributions, discourses and interpretations of others that may (or may not) be ‘internalised’ by the individual whose identity is so attributed. The notion of ‘self’ that is represented by these selves 2 and 3 is one prominent in anthropology and the social sciences, it is one that is presaged upon the denial of agency, autonomy and personal authority, and consequently renders personhood little more than a Western ‘conceit’ (Callegaro, 2013).

There are nevertheless ‘limit conditions’ to the narrative self, when ‘radical enough psychological change literally brings about a loss of identity’ (Schechtman, 2003, p. 242). One element underlying this ‘limit condition’ is the rate of personal change or loss. Slower rates of change represent greater possibilities for maintaining continuity compared to rapid, violent changes. A second limiting condition for maintaining sufficient self-sameness (or personal identity) is what she terms ‘narrative coherence’. By this, she is referring to the extent to which the individual can maintain a coherent story of continuing to be the ‘I’ he or she always was, despite marked or even sudden changes to life, self and circumstances. Even if these considerations capture some of the conditions sustaining the psychological continuity of self, ‘they are’, she argues, still ‘missing a piece and this piece … is empathic access’ (Schechtman, 2003, p. 245). By ‘empathic access’ she means when a person ‘retains some sympathy for the psychological features of the life phase to which [s/he] retains access’ (Schechtman, 2003, p. 255). So long as an individual retains some memory of past phases or periods in his or her life and these memories reflect feeling part of that memory, this bond of ‘warm memory’ preserves psychological continuity and thereby the individual's survival as a self-same self.

Empathic access is important for Schechtman, as is the anticipation of loss and the disconnection from the selves and others that have figured in the individual's past. Perhaps as Parfit claims, an individual's survival – as a person or as a self – is unimportant and what matters are the processes constituting their survival, those of managing change, of maintaining coherence and retaining these affective memories (Parfit, 2003a). Whether or not individuals retain their self-sameness may be less important than the retention of their empathic connections with their past, to which Schechtman has referred (Schechtman, 2003).

Persons as agents

So far our attention has been upon consciousness as experience – of memory and feelings, the sense of being ‘oneself’, of feeling ‘connected’ to one's past. But as Korsgaard has pointed out ‘a person is both active and passive, both an agent and a subject of experiences’ (Korsgaard, 1989:, p. 101). Harry Frankfurt questioned formulations of personhood that relied simply on some combination of a particular human body and its consciousness (Frankfurt, 1971). He argued that ‘one essential difference between persons and other creatures is to be found in the structure of a person's will’ (Frankfurt, 1971, p. 6). He made the distinction between the presence of desires and motives – primary intentions or drives – and the capacity to make choices and what he called ‘second order desires’ or ‘volitions of the second order’ (Frankfurt, 1971, p. 10). Frankfurt argues that the presence of such second-order volitions means wanting to have (or own) or not to have (disown) the particular desires that one has. Individuals who though possessing rationality have no such second-order volitions, no desires to be other than how they are, how they act, what they want are thus not persons. These latter he calls ‘wantons’, humans perhaps, but not persons. Korsgaard has argued that what determines personhood or personal identity is not the sameness of an individual's appearance, attitudes, habits or ways of life, but the continuing authorship of change (Korsgaard, 1989, p. 123). This notion of authorship – of recognising and owning though not necessarily keeping constant one's acts and desires, motives and plans – resonates with Ricoeur' s narrative unity of the self. However what Frankfurt and Korsgaard stress is not just narrative but ‘performative’ agency, doing what one intended to do.²

Dennett too has drawn upon Frankfurt's notion of ‘second-order volition’ in outlining the criteria which he believed must be met in order for individuals to possess ‘personhood’ (Dennett, 1976). To have the status of ‘personhood’, he argued an individual must be capable of having second-order intentions as well as possessing rationality; must be able to be judged as possessing consciousness; must be treated by others as if he or she is a person; must be capable of reciprocating others' feelings, beliefs and attitudes; must be able to communicate with others; and must be capable of self-consciousness. In this formulation, neither continuity over time nor identification with past selves are necessary components of personhood. Instead he emphasises the capacities or qualities that an individual must possess and not their continuity over time. Dennett's definition is not contingent upon whether these qualities persist: an individual may acquire personhood without previously having had it and individuals can lose personhood despite once having had it, in the sense of gaining or losing these capacities or qualities.

In a crowded field, other attempts have been made to define the relationship between persons and agency drawing upon similar ideas. Charles Taylor has raised the question in the following way: ‘What do we mean by a person? Certainly an agent, with purposes, desires, aversions and so forth. But obviously more than this because many animals can be considered agents in this sense, but we don't consider them persons’ (Taylor, 1985, p. 237). Taylor treats agency per se as an illustration of Frankfurt's first-order volitions or Dennett's primary intentional systems. But as well as being ‘an agent who has an understanding of self as an agent’ (Taylor, 1985, p. 263), he points out that ‘we conceive of [a person] as a special kind of agent, an agent-plus, who can also make life plans, hold values, choose’ (Taylor, 1985, p. 261). This seems to reflect Dennett's criteria of reflexivity informing actions. But then he states: ‘it is not just that we are aware of ourselves as agents… [but]…we also have a sense of certain standards which apply to us as self-aware agents’ (Taylor, 1985, p. 263). For Taylor, then, persons are not just agents, neither are they simply reflexive or second-order agents; rather, they are moral agents, capable of experiencing guilt and shame. Agency per se is a necessary but insufficient aspect of being a person; even metaphysical agency is insufficient. Moral agency is demanded. By placing ‘moral agency’ above ‘metaphysical agency’, Taylor distinguishes between the initiation and planning of behaviour and planning against a set of internal criteria which can be articulated before and after an action, realising an agency that is necessarily attached to a moral imperative. For Taylor, this distinction is important. Human beings – as persons – are not just capable of choosing to do something, of being aware of and considering that choice. They have the capacity of wanting to do other than what they do; of wanting to be other than what they are. This is what Taylor calls moral agency. It brings us back to Kant and personhood as moral standing or status.

Personhood and moral status

More clearly than Taylor, Dennett differentiated between metaphysical and moral notions of a ‘person’. To transform personhood into moral personhood, he states, calls for an extra dimension of ‘accountability’. As an example, he uses the position of an insane man who is not treated in law as accountable despite the fact that he interacts with other, non-insane persons in ways otherwise ‘indistinguishable from normal personal relations’ (Dennett, 1976, p. 177). While accountability is not required for such ‘basic’ (metaphysical) forms of personhood-agency, it is required for ‘moral’ agency. Moral agency confers a ‘higher’ order of personhood than mere ‘metaphysical’ agency. This raises the question of how far moral agency, moral identity and moral status converge in thinking about personhood within an ethical or moral philosophical tradition.

Metaphysics has pursued the relationship between agency, identity and personhood (or self-hood). These inquiries subsume two distinct motives. One, a relatively neutral line of questioning, asks what confers unity to individuals – how and to what extent do people develop and retain a sense of their personal identity, of being the person that they are? In short what are the constituents of personhood and people's sense of self? The other, less neutral, but perhaps of greater social import, is what distinguishes persons from other sentient beings, what makes individuals ‘human’ and what consequences should follow from that? While the search for the necessary criteria of personhood may seem a metaphysical inquiry, a search to know the self ‘from the inside’, inseparable from such inquiries is a concern with status or standing and the judging of persons. It is more moral philosophy than metaphysics that underlies Kitwood's account of personhood and person-centred care.

Just as metaphysical concepts of personhood seem to possess degrees of capacity, so too does the concept of the moral standing of persons. As Perring notes in his discussion of medical ethics, ‘[most] approaches deciding who deserves treatment and what are the rights of the patient implicitly assume the notion of 'degrees of personhood’ ' (Perring, 1997). Replacing metaphysical with moral personhood does not avoid having to confront such issues; indeed it sharpens such confrontations. If personhood is a matter of degree, the rights which an individual might claim must also be matters of degree – and thereby subject at the very least to some kind of negotiation. Much contemporary philosophy seems to have abandoned the attempt to define a stable continuous self opting instead for a status model of personhood. Like any other status, however, this too is contingent, relational and normative – in short a matter of degree.

For some ethicists, this poses such serious problems that they would prefer to abandon personhood as status altogether arguing that 'instead of encouraging the development of morality as an all-pervasive fundamental world outlook, it justifies restricting moral concern to the observance of a small number of rules' (Sapontzis, 1981, p. 618). For others, restricting the concept of moral personhood to a purely normative concept means that ‘the ascription of personhood is nothing but our declaration that an entity is a valid object of our moral concern’ (Ohlin, 2005, p. 237). The search for a basis for moral concern and the application of human rights must therefore lie elsewhere and not in the concept of personhood. Farah and Heberlein, reviewing the potential neuroscientific bases for ‘personhood’, concluded that since it is impossible, empirically, to defend any specific criteria for personhood, ‘rather than ask whether someone or something is a person, we should ask how much capacity exists for enjoying [such qualities as] intelligence, self awareness, etc.’ (Farah & Heberlein, 2007, p. 46). Yet, as these authors also conclude personhood narratives persist. They resolve this conundrum by claiming that personhood may be a ‘functional illusion’ that reflects the way human brains process information about other human beings.

Personhood clearly has a powerful presence in society. It is not easy to dismiss the term outright, or even replace it with more elemental terms such as ‘rationality’, ‘judgement’ or ‘autonomy’. Consequently, rather than seeking to dissect or demonstrate the specific qualities of personhood, some authors have suggested that it might be more straightforward to demand individuals' rights as of right and using Kant to see the individual as a ‘rights-holder’, asserting that persons are ‘ends-in-themselves’(Kant, 1895). In effect this view of the thin, bare personhood of Kantian ethics (Mackenzie 2007, p. 277) ‘casts persons as independent self-sufficient holders of rights’ (Erde, 1999, p. 146). Being a rights holder is being a person and vice versa.

The variable nature of moral identity

Contrasting with this theme of bare personhood, other interlocutors have postulated more graduated perspectives evinced for example in developmental studies of personhood and the self. Some philosophers and psychologists have argued that the sense of self emerges and develops through a process of emergent ‘second-order’ systems of control over the individual's actions, desires, wants and wishes rather than being present from the start, unchanged and unchanging. Such a perspective is evident in Walter Mischel's studies of ‘delay of gratification’ in the development of a robust, agentic self among children (Mischel, 1974), or in Piaget's concept of human development as replacing a limited and limiting set of biological capabilities with successive higher-order, acquired capabilities (Piaget, 1976) or again, in Vygotsky's concept of the internalisation of ‘secondary’ thinking through language and tool use (Vygotsky, 1978). Beauchamp (1999) provides a succinct articulation of this point when he argues that we first become human, then become human selves, and finally acquire by degrees the status of personhood, eventually learning to exercise ‘genuine’ agency – in the sense of having volitional control over our desires.

These various approaches represent a ‘developmentalist’ notion of what Taylor has called ‘agency-plus’. The possibility of a decline is also implied. If moral agency and self-hood are matters of degree and development, the moral status of personhood must be similarly qualified. If the acquisition of personhood status is a matter of human development – it too must be subject to human ageing and decline. As metaphysical concerns turn to moral concerns, the developmentalist approach becomes more salient and more problematic. While metaphysicians of personal identity have considered questions of sameness arising from the processes of ageing, the general consensus has been that changes brought about slowly and imperceptibly, such as those occurring as a consequence of ageing, do not pose any major threat to the identity of persons. The self is assumed to maintain its identity throughout life, through the affective bonds of memory and narrative, including its own narratives of growing up and growing old. But if personhood is thought of as an acquired status, constituted by increasing reflexivity, higher-order thinking and ‘agency plus’, and if these qualities serve as necessary precursors of moral standing, then the consequence is that moral standing itself must wax and wane over the life-course.

It is generally accepted that infants are neither capable of explicit declarative memory³ nor do they display reflexivity and thus have no moral agency. But does their lack of sufficient moral agency have any bearing upon their moral status – of being a legitimate object of others' care and concern? If both personhood and moral agency are developmentally acquired, the self or personal identity of the child remains contiguous. The acquisition of new qualities and capacities adds to but does not render unidentifiable the earlier self even if it cannot be remembered. A similar argument can be made about ageing: the self remains even if the qualities or attributes of personhood and moral agency are compromised. But the symmetry is by no means perfect. While age may compromise the attributes of personhood and qualify the extent of moral agency, were age to eliminate some or all of the underpinning attributes, could it not be argued that personhood as moral status can be lost through agedness?

In the context of what has been described as the new ‘neuroculture’ (Williams, Higgs, & Katz, 2012) changes in corporeal being are seen as sources of change in consciousness and mental capacities and hence in the capacity to perform as a self or person. If changes occur in those structures of the ageing brain that support neuronal functioning, does this imply a diminution of the infrastructure of the self? Or should they be seen as part of the ever changing external conditions that the self as person can and does re-interpret – because of its ‘under-determination’ by its social cultural and biophysical constituents (Sugarman, 2005, p. 806)? In other words should the symmetry of development and decline be qualified such that the processes of acquiring the status of personhood are not deemed to be the same as the processes that compromise or degrade agency and identity? Having become persons, perhaps individuals remain persons, and having acquired moral status as persons might they not retain moral status, at least under normal conditions.

This leads to an alternative formulation: is it only abnormal development or abnormal decline that can disrupt the continuities of agency and personhood, and is dementia an example of such a disruption? For Kant there is an assumption that personhood is a status that persists, along with the necessary rights of such persons to justice fairness and moral consideration. But Kant's abstract personhood assumes an inherent rationality that persists throughout adult life; how Kant might interpret the potential loss of moral agency has been a matter of some speculation, to the extent that some have argued that Kantian ethics would make pre-emptive suicide in the face of dementia a moral desideratum, sacrificing one's self-same body rather than losing one's self-directing moral agency (Cooley, 2007). Clearly once one qualifies personhood as a matter of degree, for whatever reason, such qualifications extend equally to its moral as to its metaphysical status

Conclusions

Our intention in interrogating the notion of personhood and its relationship to dementia has been to point out how much more complex the concept is than it first seems. Kitwood's assumptions about personhood, we argue, confound metaphysical with moral philosophy, while leaving open the prospect that the only conditions threatening adult personhood are those that arise when the circumstances of dementia are transformed by a malignant social psychology. By taking the position that personhood is an attribute of relationships, not capabilities, Kitwood sidesteps consideration of what we have termed the component approach to personhood – those necessary and sufficient conditions that render personhood possible. By treating personhood as a moral status demanding certain rights, Kitwood has confounded the constitution of personhood with the conditions for its existence, namely that it exists in an ‘I-thou’ relationship, the responsibility for which, though unspecified, implicitly is the carer's. By avoiding further considerations of personhood, Kitwood ends up treating personhood as little more than a moral entity, ‘a valid object of our moral concern’ (Ohlin, 2005) and as such, deserving those rights that follow from being of ‘moral concern’ without further questions or qualification.

While we have no dispute with recognising that people with dementia are and should be objects of moral concern, as indeed should all human beings whatever their disabilities, we also recognise that many people with dementia lack some of the capabilities deemed to constitute metaphysical personhood – such as self-awareness, reflexivity, second-order volition and narrative unity and that such deficits increase with time. The problems with a personhood centred approach to helping people with such impairments are twofold. In the first place, Kitwood's approach fails to distinguish between maintaining the moral standing of persons and preserving their capabilities of performing personhood. The failure to recognise this distinction places the burden of responsibility upon other persons for sustaining the personhood of individuals with dementia, not just in sustaining moral concern for them (their moral status as persons), but in preserving their capabilities for personhood (the metaphysical components of personhood). The failure to achieve the former is too easily treated as a failure to realise the latter.

Secondly, as others have noted, Kitwood's original conceptualisation of personhood was rooted in Christian theology in which all humans have intrinsic worth. His later work abandoned this religious underpinning leaving it less coherent and more relativist (Baldwin & Capstick, 2007, p. 180). Instead of using personhood as a ‘superfluous, confusing and without pragmatic use’ term ‘that can be easily used as a cover-up concept’ (Gordijn, 1999, p. 356) to improve the position of people with dementia, outside its everyday use, as persons, people, etc., it might be better to avoid the term in professional and policy discourse. An alternative approach is to see dementia care in terms of containing and contesting the malign social imaginary of the fourth age (Gilleard & Higgs, 2010; Higgs & Gilleard, 2015). We have chosen this use of words to contrast with Kitwood's phrase ‘malignant social psychology’ (or indeed Sabat's (2006) ‘malignant positioning’) because both these latter formulations stress inter-personal rather than social processes. This does not mean neglecting the study of individual agency, of memory, of narrative identity or of sense of self in people with dementia, neither does it mean abandoning attempts to support people's existing capabilities while minimising the harmful consequences of their incapacities. What may matter more is acknowledging that most carers, paid as well as unpaid, can and do recognise the moral standing of people with dementia and respond through a moral imperative of care. Their care practices may either deepen or lighten the darkness of the fourth age. To consider how best to do this, we suggest, requires no moral or metaphysical assertions about the 'personhood’ of people with dementia, beyond the recognition of a common humanity and the taking of due care.

Acknowledgments

We would like to thank the anonymous reviewers of earlier versions of this paper for their valuable comments which we believe have much improved this final version. Paul Higgs would like to acknowledge the support of the MARQUE project ESRC/NIHR ES/L001780/1.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

MARQUE project [grant number ESRC/NIHR ES/L001780/1].

Notes

1. This term draws on Immanuel Kant's Fundamental Principles of the Metaphysics of Ethics (1895) and is discussed in Higgs and Gilleard (2015).

2. The task of empirically demonstrating such intentionality and performative agency is beyond the scope of this paper. Reviews of this research area can be found in Malle, Moses and Baldwin (2001) and Lieberman (2007).

3. Evidence of the near total ‘amnesia’ for autobiographical events before age 3 has most recently been reviewed in Bauer (2014).