Dementia: sociological and philosophical constructions

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Social Science & Medicine 58 (2004) 369–378

Dementia: sociological and philosophical constructions Daniel H.J. Davis College of Medicine and Veterinary Medicine, The University of Edinburgh, Teviot Place, Edinburgh, Scotland EH8 9 AG, UK

Abstract This analysis presents a challenge to the biomedical view of dementia as a disease. This view is critiqued from two perspectives: those of sociology and philosophy. Because these domains inform the creation of the medical discourse, their analysis provides an important refinement to the apprehension of the phenomenon of dementia. From the work of Foucault, and in particular his analysis of the historical origins of modern medicine, the sociological construction of dementia is considered. Following this, the philosophical question of Being is discussed, considering particularly the positions of Heidegger and Merleau-Ponty. Lastly aspects of dementia nursing that are damaging to those relatives forced to take on the role of primary carer are isolated, in the context of Kitwood’s view that it is possible to maintain personhood at the extremes of this condition. It is suggested that this critique of sociological and philosophical foundations of dementia might offer a way of approaching the dismantling of the self and revise current conceptions of dementia care for the better. r 2003 Elsevier Science Ltd. All rights reserved. Keywords: Ageing; Dementia; Phenomenology; Ontology

Introduction The current construction of dementia is as a biomedical disease, progressive and pathologically degenerative. Within medical discourses, dementia is gazed at through a system of neurofibrillary tangles and b-amyloid plaques. These features of brain tissue become established as ‘hallmarks’ of pathological disease. Psychiatrists then attempt to comprehend how this disorder might effect behavioural, personality, mood and cognitive problems. From the WHO internationally agreed upon definition: Dementia is a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. Impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or E-mail address: [email protected] (D.H.J. Davis).

motivation. This syndrome occurs in Alzheimer’s disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain. (WHO, 1994, p. 47) Definitions inevitably present certain problems consequent on the very nature of prescription. However, medical definitions, and particularly the definition of a phenomenon as all pervasive as dementia, can be even more problematic given the singularity of medicine’s epistemological perspective. Since this perspective is tacitly informed by those of sociology and philosophy, the rigour with which medicine circumscribes its own discourse has unacknowledged ramifications into these areas beyond itself. A critique of medical definitions, then, could begin with an inquiry into these particular areas in order to ascertain the point at which medicine begins. Exposing this operation, in turn, reflects back upon the medical practices that have issued from the original definition. Central to this exposition of the sociological construction of dementia is the work of Michel Foucault, particularly his analysis of the historical origins of modern medicine in The Birth of the Clinic (2000).

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Following this, the philosophical question of Being in relation to dementia is investigated. Being and Time (Heidegger, 1990) represents a substantial position on which an understanding of modes of being can be based. Further to this, a possible way to view how Being in dementia is compromised is suggested by a reading of Merleau-Ponty’s exploration of the Phenomenology of Perception (2002). In relation to what is presently considered to be ideal dementia nursing, this overall approach might offer a broader understanding of the phenomenon of dementia and a more extensive view of dementia care.

The sociological construction of dementia Dominant constructions of dementia are located across several sociological spheres, and they are powerfully sustained through their being able to produce an image of dementia that society, on the whole, might find comfortably reassuring. The route that this analysis will take starts with an investigation of dementia within the discourse of biomedical disease. The work of Foucault provides an insight into the sociological grounding of dementia, inasmuch as he considers biomedicine as a force operating sociologically. Using Foucault’s exposition of the contingent formulation of disease and the corresponding problematisation of dementia, preparation can be made for a more progressive conception of this phenomenon. Emergence of the anatomo-clinical gaze Foucault’s genealogy of Western pathological medicine looks back, historically and culturally, to the scientific climate of the end of the eighteenth century. His critique focuses on the ‘anatomo-clinical gaze’ that emerges as a radical shift in the discursive practice of medicine after the Enlightenment. He describes the origins of the gaze as the cultural synthesis of two previously disparate traditions of explicating the body: that of the anatomisation of corpses; and, the nosology of clinical practice. These systems came together to form on the one hand, new geographical lines, and, on the other, a new way of reading time. In accordance with this litigious arrangement, the knowledge of the living, ambiguous disease could be aligned upon the white visibility of the dead. (Foucault, 2000, p. 126) For the first time, then, the anatomo-clinical gaze explicates, in the spirit of Descartes, a new way of knowing the nature of the body and its relation to disease. If a previous understanding of disease was as imbalances and disequilibria, contra the natural body, the gaze now revealed disease as residing within the

natural body (Armstrong, 1982). There was now a relation between the evidence presented at dissection and a corresponding series of symptoms and signs ante mortem. In being able to chart the internal presence of disease through time and space, the gaze is guided by the symptoms manifest at the surface. By a realistic shift in which medical positivism was to find its origin, surface, hitherto a structure of the onlooker, had become a figure of the one observed... Hence the appearance that pathological anatomy assumed at the outset: that of an objective, real, and at last unquestionable foundation for the description of diseases. (Foucault, 2000, p. 129, emphasis added) Thus, the conditions of possibility for the emergence of the gaze depended on the increasingly technical mode of medical perception that arose from underlying cultural structures. For Foucault, the production of such knowledge reveals more fundamental epistemological structures of a given moment of discursive formation, in this case, the ascendancy of scientific positivism. He views scientific epistemology as sanctioning a certain representation of reality, a ‘will to know’ (Foucault, 1990) and that this, a priori, allows for the historical possibility of a legislative medical project. Foucault is showing ‘‘historically how effects of truth are produced within discourses that are in themselves neither true nor false’’ (Foucault, 1980, p. 118). Hence, Foucault uses the gaze to be more revealing of a sociological dynamic than as a means to approach truth. ‘‘Medical scienceyis socially constituted to produce—in the form of scientific thought—definitions of health, normality and abnormality’’ (Vincent, 1999, p. 68). Discussed below is this idea of the gaze as a factor in the positioning of dementia as a medico-sociological problem. In more general terms, it also discloses deeper conceptual tensions within the medicalisation of older age as a whole. Gazing at dementia: power/knowledge With this sense of historical specificity in mind, the phenomenon of dementia can be examined through the gaze, for further formations of knowledge are predicated on the established discourse generated by this episteme. As far as our apprehension of dementia is concerned, Alzheimer’s original description of the disease was conceived within a framework whereby ageing was seen as a series of identifiable organic degenerations. This system characterised the ‘normal’ ageing physiology as a tending towards involution (Armstrong, 1982). In conjunction with this, deteriorations in global cognitive function associated with older age were thus known as ‘senile dementia’, and were consequently considered a normal part of the ageing process (Herskovits, 1995,

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p. 149). Accordingly, the classification of Alzheimer’s observed histopathology was to define a pre-senile dementia as a distinct disease of adults under the age of 65 (Fox, 1989, p. 63). Clinico-pathological research continued, however, to probe new perceptual domains as the electron microscope revealed further details of the histological changes in Alzheimer’s dementia. This raised ‘‘questions regarding the validity of the distinction of Alzheimer’s original characterisation’’ of ‘pre-senile dementia’ with regard to senile dementia (Fox, 1989, p. 64). In time, it became widely recognised that the initial differentiation between senile dementia and Alzheimer’s disease was erroneous on scientific grounds (Robertson, 1990, p. 433). This revised designation of dementia, one now that encompassed the senility of old age, opened up the possibility of finding biomedical means of treating the disease. As discourse creates the effects of the will to know, the disease-category now authorises socio-cultural norms. This structure, in which space, language, and death are articulated—ythe anatomo-clinical method— constitutes the historical condition of a medicine that is given and accepted as positive... Disease breaks away from the metaphysic of evil, to which it had been related for centuriesy [S]een in relation to death, disease becomes exhaustively legible, open without remainder to the sovereign dissection of the gaze. (Foucault, 2000, p. 196) This authority is representative of a power that is exerted through historically constituted fields of knowledge, and this knowledge reflexively perpetuates such power relations. Foucault thus construes that power and knowledge are directly predicated on one another. This power is ‘‘a productive network which runs through the whole social body’’ over and above the apparatuses of the state (Foucault, 1980, p. 119, emphasis added). This network is not driven by any unique strategist—the ‘‘person of the sovereigny[with which] political theory is obsessed’’ (Foucault, 1980, p. 121)—but a force that ‘‘induces pleasure, forms knowledge, produces discourse’’ (Foucault 1980, p. 119). Thus, Foucault’s conception of power is not one of a purely repressive force, but one that includes this possibility of production such that social interactions, and their associations with ideas and knowledge, can be sustained. Because this network pervades all social relations, its manifestation in everyday practices invites analysis that originates at the micro-local level. In line with this, for medical discourse, the body becomes a public object, and thus, knowledge of it affirms the power of the gaze. The living body is now an object to be known and controlled through the establishment of surveillance techniques: clinics, pension offices, censuses, and so forth. In terms of the

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population itself being an object of scientific investigation, a ystate government and the human sciences animate the population; they grant it a life of its own because its propagation, health and longevity are seen to be determined by the laws of nature. On the other hand, they constrain the population; they monitor its life because they see it as potentially menacing to the stability of the economic, moral and political orders. (Katz, 1996, p. 23) With dementia being seen as continuous with a range of pathological degenerative changes that represented disease, the collective work of clinicians, researchers and activist ‘lay carers’ could then attempt to legitimate the ‘‘extension of the medical gaze over the domestic and social lives of elders’’ (Robertson, 1990, p. 431). In this context, there emerged a social movement that aimed to prioritise dementia research and care on the respective biomedical and social agendas in the USA. Coincident with this, the establishment of the National Institute of Ageing (NIA) in 1974 used the energy of the movement to secure budget increases from the US Congress. In a personal communication to Fox, Robert Butler, the first director of the NIA indicates how he was interested in claiming Alzheimer’s disease as a major research area for the NIA: ‘‘I decided that we had to make it [Alzheimer’s disease] a household wordyI call it the health politics of anguish’’ (Fox, 1989, p. 82). The politicisation of the position of dementia is illustrative of how power operates at all levels, and the historical genealogy can be traced back, excavated in opposition to the direction of the ‘will to know’. Understanding this at the micro-level would suggest that this construction of dementia should satisfy some productive element of power. It seems that the formulation of the dementia-as-disease episteme does indeed produce a more palatably reassuring image of ageing. For it might be expected that it is better to witness armies of doctors, scientists, social workers, making visible (with a view to eliminating) the foundation of a disease than to fear a normalised deterioration without recourse to any structured cultural explanation. Theoretical tensions in the medicalisation of older age The sociological influences that have framed this present construction of dementia can be set against a more general reading of the attempt to bring the aged body under medical scrutiny. The extension of a medicalised knowledge to older age is, however, undermined by a series of theoretical tensions. The medical gaze is positioned to apprehend processes that deviate from the ‘natural’ physiology of the body. As seen in the case of dementia, knowledge grounded in the

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identification of pathology from the empirical analysis of tissue dysfunction can give rise to the power to manage dementia as a disease. However, with degenerative changes across a multiplicity of organ systems being almost ubiquitous in older age, the central distinction between the normal and the pathological is shown up as problematic (Armstrong, 1982). Scientific clinicopathology can no longer provide a standard referent, for the very process of ageing itself would seem to be pathological. With the gaze regarding degeneration as being distributed throughout the aged body in life, the normal and pathological become established in uneasy relation to each other. This is elucidated through the positivist effort to define a ‘‘specific set of bodily norms and pathologies that dissociated general health from ‘normal’ physiology in old age’’ (Katz, 1996, p. 44). The gaze now becomes disordered, for if the aged body always already displays the symptoms of pathology at its surface, there is a denial of the possibility of health in older age. Equally, the constant encounter of degenerative changes serves to normalise the appearance of ageing. Thus, ‘‘ythe aged body was neither diseased nor healthy but both normal and pathological since both conditions in old age were the expression of the same physiological laws’’ (Katz, 1996, p. 44). For Georges Canguilhem, who made much of Foucault’s work possible, a positivist attempt to delineate the normal from the pathological is misguided from the start, for it assumes an idea of normality that is a singular, pre-established harmony with a natural order. The co-relation of these entities on a spectrum of parameters is problematic as Canguilhem describes it, because, health cannot be normalised through statistical and positivist measurements. Rather, health is dynamic, representing a plurality of possibilities and potential transitions to new norms: ‘‘an individual organism’s particular disposition and reaction with regard to possible diseases’’ (Canguilhem, 1989, p. 137). This idea of health thus denies any conceptual continuity with an idea of pathology. If, in essence, a state of health reflects a potential to adapt actively to new environments, the pathological becomes that which proves less able to be flexible in this way. ‘‘Disease is still a norm of life but it is an inferior norm in the sense that it tolerates no deviation from the conditions in which it is valid, incapable as it is of changing itself into another norm’’ (Canguilhem, 1989, p. 183). In this respect, it could be suggested that ageing does indeed have a pathological dimension, one that is characterised by a general physiological inadaptability. When referring to the sick, Canguilhem could as easily be alluding to the elderly: ‘‘The sick living beingyhas lost his normative capacity, the capacity to establish other norms in other conditions’’ (Canguilhem, 1989, p. 183).

However, a closer reading, beyond a notion of pure physiological capacities adapting to general circumstances, hints at the sociological determinant to health in ageing. From outside the focus of the medicalising gaze, the general circumstances themselves can be interrogated. ‘‘The pathological is not the absence of a biological norm; it is another norm but one which is, comparatively speaking, pushed aside by life’’ (Canguilhem, 1989, p. 144). In this displacement of norms, it is the socially discriminating factors that enframe the disabling experience of ageing. Thus, being ‘pushed aside by life’ may engender problems of health in older age, but that is not to equate ageing necessarily with the pathological. Overall, this move away from normative representations of health and illness represent a serious contest to the medicalisation of later life. Problematisation of dementia This critique of how the sociological construction of dementia has emerged has essentially been a view of how this condition has become problematised. For Foucault, his examination of the history of thought is one of ‘problematisations’ (Foucault, 1984, p. 388). By this, he is suggesting that for an aspect of human existence or behaviour to enter a field of thought: a number of factors have made it become uncertain, to have made it lose its familiarity. These elements result from social, economic, or political processes. (Foucault, 1984, p. 388) Thus, the problematisation of dementia can be seen to have been set forward as an issue by the medicalised discourse that pervades our apprehension of older age. It is relevant, then, to analyse ‘‘not behaviors or ideas, nor societies and their ‘ideologies’, but the problematisations through which being offers itself to be, necessarily, thought—and the practices on the basis of which these problematisations are formed’’ (Foucault, 1992, p. 11, original emphasis). In the case of dementia, then, sociological conditions have allowed the anatomo-clinical view of dementia to be propagated in an interesting way. In establishing that previously, senile dementia was regarded as a normal part of ageing, and that the advent of rationalist modes of investigating the condition have led to its problematisation as a biomedical disease, the phenomenon itself becomes inescapably embedded in sociological discourse. Problematisation doesn’t mean representation of a pre-existing object, nor the creation by discourse of an object that doesn’t exist. It is the totality of discursive or non-discursive practices that introduces something into the play of true and false and

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constitutes it as an object for thought. (Foucault, 1988, p. 257)

Ontological nature of the experience of dementia Here, the central concern is to establish how those with severe dementia can be said to exist in the world. In this respect, the philosophical tradition within which this interpretation of Being belongs owes much to Heidegger (1990) and Merleau-Ponty (2002). This conception can be presented as a critique of a rationalist model where the cogito reflects on the world, and abstract reason is sufficient grounds for the construction of self. This rationalist view, of course, stems in part from Descartes’ skeptical formulation of existence as originating from the certainty of the thinking mind. Already, in seeking to regard the construction of dementia as having its origin in a sociological context, I have suggested that the gaze exploits its positivist scientific basis to present a more sanitised view of how to approach its treatment, and ultimately its ‘cure’. From an entirely different perspective, a philosophical stance would posit that the breakdown observed in advanced dementia might represent a fundamental disruption in Being, or more precisely, a mode of Being. Given this, a better way of negotiating the approaches to dementia care might perhaps emerge. Following Heidegger’s analysis (1990), the question might be asked: what does it mean for something to be? More specifically, what aspects of being change, or even disintegrate, as the existence of a person becomes subsumed by the dementia-disease? In order to understand this more fully, Being needs to be approached as fundamental philosophy. As explained below, metaphysical notions of self, which stem from a traditionally inadequate ontology, have not meaningfully penetrated this problem. However, an examination of these post-Enlightenment metaphysics is important as a starting point for interpretative, as opposed to analytic, conceptions of Being-in-the-World. Cartesian tensions The understanding of self that is provided by metaphysics is based on an epistemological fracture between subject and object that has yet to be sufficiently theorised. Consistent with this, the modern scientific view of the mind and its relation to the world has been beset by similar problems (Leonard, 1994). Implicit within empirical paradigms is the Cartesian notion that distinguishes the substance of mind and the substance of body (Leder, 1990). While the substance of the body— and the material world that it inhabits—is objectively framed, the substance of the mind, however, remains separate, isolated and unlocatable. From the mind alone

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is developed the notion of the subjective self. However, as subject, the self may only contemplate the world via representations constructed by the body (Stenner, 1998). Mind and body, then, are mutually dependent, but insurmountably distinct. The prominence accorded to this dualist position has been augmented by powerful developments in science, technology and medicine (Dreyfus, 1991). The objectification of the external world has allowed it to be shown up in a series of measurable properties, resulting in calculations, descriptions and predictions. While explicating the world, however, this method falls short of providing a full understanding of it (Dreyfus, 1991). Similarly, the objectification of the body has located disease exclusively in a corporeal domain, and so from a medical perspective, this reduction alone provides a grounding for physical interventions. Heidegger and fundamental ontology The project of Heidegger’s phenomenological inquiry is to reawaken the question of Being. He is reacting to a metaphysical tradition that has inured us to trying to understand Being through the vacillating models of empirical objectivism and rationalist subjectivism (Stenner, 1998, p. 65). Heidegger suggests that enframing this notion of Being across such debates only serves further to prioritise epistemologies of self—i.e., ways of knowing about Being. Unable to advance because of these metaphysical tautologies, Heidegger attempts ‘‘to open up the ground of metaphysics by focussing on being before it becomes articulated into subject and object’’ (Stenner, 1998, p. 62). Heidegger introduces a concept of Dasein that understands human beings (and human-Being) not as subject, consciousness or ego, but as self-interpreting existence that cannot be extricated from the world: Being-there. This self-understanding of being is Dasein’s unique characteristic, and it comports itself towards such being: ‘‘in each case, it has its being to be’’ (Heidegger, 1990, p. 33). Heidegger maintains that an attempt to analyse Being phenomenologically originates from one that cares (Sorge) enough for the question to be evoked in the first place. He suggests that this kind of reflexive questioning indicates that we should already have an understanding of Being, a pre-ontological awareness, and this is the first approximation for Heidegger’s investigation. This condition of care, caring about one’s existence, is central to the various features that Heidegger eventually maps out as modes of Dasein. Because care is so crucial to Heidegger’s analysis, it is worth trying to place his interpretation of care within his deeper explication of being. For Heidegger, care has a threefold structure (Heidegger, 1990, p. 192): (1) It is ‘‘ahead-of-itself’’, meaning that caring Dasein considers

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possibilities ahead, it being continually facing forward in its activities. (2) Its ‘‘Being-already-in-(the-world)’’ indicates care as acknowledging the situatedness of its position, always already related to the facticity of the possibilities that confront it. (3) Care as recognising Dasein’s ‘‘Being-alongside (entities encountered withinthe-world)’’ reminds us of Dasein’s occurrent engagement with the world. Heidegger offers a temporal aspect to being that accords significance to Dasein. ‘‘Dasein’s Being finds its meaning in temporality’’ (Heidegger, 1990, p. 19). His examination of the importance of care provides a connection to a sense of time. ‘‘Just as care allows us to unify the various structures of Dasein in the notion of a being that makes an issue of its being, so temporality makes sense of the threefold structure of care’’ (Dreyfus, 1991, p. 243). From the above, each aspect of care can be mapped onto temporal existentials. Thus, being ahead-of-itself ties Dasein with its sense of the future, being-already-in denotes a past, and being-alongside connects Dasein with a present. ‘‘Temporality reveals itself as the sense of authentic care’’ (Heidegger, 1990, p. 326). The temporal boundaries of our life begin with our birth, our own thrown-ness. Obversely, death represents our final horizon. For Heidegger, an awareness that Dasein can die at any time configures its attitude from the outset—Being is always already towards death; existence is this standing-out into time. An ontological awareness of this Being-towards-death, the running out towards death, is a privileging of futurity that underlies our reflexive self-awareness, distinguishing the worldconstituting existence of Dasein from all else. Fundamentally, Heidegger describes Being as a dynamic engagement of varying degrees with a world that Dasein constitutes. This is Being as becoming—not ‘‘defined as a metaphysics of presence’’ (Stenner, 1998, p. 72), but as a contextualised and temporalised awareness of existence. More profoundly, this awareness of existence becomes awareness as existence. In viewing the world as being both constituted by and constitutive of the self, Heidegger offers a paradigm that is fundamentally different from the Cartesian notion of the body as an object of possession. The phenomenological perspective demonstrates that rather than having a body, we are embodied (Leonard, 1994, p. 52). Dasein embodied Merleau-Ponty develops from Heidegger a notion of the body-subject that he places in the field of the lifeworld. The life-world is experienced through perception (as opposed to conceptualisation) and so is experienced before thematisation (i.e., before even a conscious organising of the world, so alluding to Heidegger’s pre-ontological awareness of Dasein). Field, used in a

Gestalt sense, represents our modal perceptions of space and time, organising experience into relations of mutual significance, integrated into the existential realm. These fields are effectively related by virtue of a ‘primordial contract’ between them, and are always already in existence (Merleau-Ponty, 2002, p. 251). The bodysubject, the experiencer, is incarnate and the nullpoint of the perceptual field. According to Merleau-Ponty, then, experiencing, moving, thinking are neither activities of a cogito, nor of ‘objects’, but are modes of being—a necessary pre-thematic layer, the very pre-condition for a conscious Dasein (Tiemersma, 1983). As the centre of one’s experiential field, there is an outward engagement with world; practical intentionality has an externally directed vector. This embodied connection is bounded by the physicality of experience. If ‘I’ am behind my eyes, but can navigate my body through the concreteness of the world’s contours, then ‘I’ and my body exist in a pre-aware unity in which conscious corporality is absent (Leder, 1990). Here, then, is the body-schema, delineated not by atoms, cells and organs, but by a lived experience that creates a knowledge of my Being-in-the-world. By extension, the spatiality of the world is mapped from the spatiality of the body. The world can only be apprehended by bodily capabilities that correspond to the integration of the bodily- and world-field. Prethematic knowledge forms a practical system, functioning in a coordinated and dynamic way: perceptual and movemental (Merleau-Ponty, 2002, pp. 171–177). Furthermore, these schemas are not integrated in an individual and isolated way: there is a wider social field that we directly exist into (Williams, 1996, p. 704). Ambiguous living towards death In a move away from the atomistic model of sense impressions espoused by empiricism, Merleau-Ponty advances the idea that we encounter things in a context—foreground against background—referenced to a horizon. At its most fundamental level, MerleauPonty’s analysis of our perceptual experience reveals that indeterminacy is an ineluctable part of our Gestalt existing-in-relation to the world. Our perceptual experience begins, pre-reflective, embedded in an ambiguous world-horizon. This primary ambiguous quality is key, for ‘‘its meaning is an equivocal meaning; we are concerned with an expressive value rather than with logical significance’’ (Merleau-Ponty, 2002, p. 7, emphasis added). Here, Merleau-Ponty is describing the importance of conscious reflection in collapsing the phenomenal field into a configuration that expresses something meaningful. The background horizon constantly shifts, before reflection, just as the unconcerned eye does not settle on one formation of the Necker cube, or of the opposed

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faces/goblet in the related Gestalt image. As this equivocal hypostasis requires reflective interpretation in order to make sense of perceptions, the affective value of what is experienced becomes paramount. So to search for the faces, or to want to see the goblet: meaning is resolved through conscious affect. Reflected experience, then, is only determinate and crystalline because context enframes meaning and sense-making throws the significant into relief. In this way, the habitual body is built upon successive beds of experience that record our past in the subliminal and project us towards the future (Philpott, 1998, p. 8). These structures that guide our sense of understanding from the ambiguous world-horizon become sedimented layers of the body—active residuals of one’s intentionalbody experience. ‘‘Bodily experience forces us to acknowledge an imposition of meaningy My body is that meaningful core which behaves like a general function, and is susceptible to disease’’ (Merleau-Ponty, 2002, p. 170). Existing unimpaired, one can be guided by what become pre-reflective body practices, and from our affective existence, one can abstract significance. Thus, with Heidegger, the final and fundamental horizon is death, and because of this, one’s unique operations in the world are still imbued with significance.

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advances and unfolds, even the awareness of Beingtowards-death dissipates. Outside of an understanding of time and Dasein, there is an irrevocable disjunction in Dasein’s mode of being so that it is no longer Dasein. Thus, the consequence of a phenomenological approach to ontology and dementia is this: by trying to diagnose early dementia using neuropsychological tests or SPECT imaging, there is a privileging of cognition, and a failure to recognise that dementia, even in the early stages, represents a fraying of the self. Dementia effects the dismantling of the self until there is nothing left.

Theorising practice Given the conclusions drawn above, certain practical implications follow. Through a reading of phenomenology, the relationship between dementia and Being becomes such that the former radically undermines the latter. This happens to the extent that at a certain point in the onset of dementia, Dasein’s claims to being become destabilised and ultimately, no longer sustainable; its mode of being has irrevocably broken down any meaningful awareness. On these grounds, current conceptions of dementia care can be critiqued.

Fracture: the rending of understanding An enduring personhood As Merleau-Ponty hints at above, in illness the bodyschema is disturbed. We doubt our own dimensions, distrust our capabilities, and a disintegrating cognition erodes our Being-in-the-world. Impairment of the bodyschema leads to an impoverishment of the life-world. But what is so devastating about the relentless nature of dementia is the very splintering of the sedimented layers of Being. The phenomenological uncertainty that is inherent in perception starts to break down in those with dementia, and the life-world dissolves into background meaninglessness. And this field cannot be restructured, because the bedrock of self, on which meaningful experiences have sedimented, is now in fragments. To return to a standard understanding of the phenomenon of dementia, Western biomedicine describes dementia as being primarily a cognitive psychiatric disorder, followed by affective and behavioural disturbances (WHO, 1994). Such a formulation is too narrow: to attempt to separate cognitive processes from the affective is futile. Mood disturbances are not in reaction to frustrations and fears of cognitive decline. Affective determinants of how perceptions can be assembled and the cognitive-emotional interpretation of sense have fundamentally unraveled. More deeply, the very process of living in the world is derailed. New experiences do not become sedimented: they trickle away, ungrasped. Even the physicality of the body is involved as continent control recedes. As the disease

One of the most radical thinkers to have addressed the subject of dementia care is the late Tom Kitwood. His work as the leader of the Bradford Dementia Group is rightly considered to be ground-breaking in its attempts to maintain personhood in advancing dementia. His work derives from an assertion about the nature of being, and Kitwood’s totalising premise is that a person with dementia remains as a person throughout their disabling experiences. Thus, in contrast to Heidegger’s explication of existence that is necessarily situated and self-aware, Kitwood understands personhood to be transcendent, sacred and unique (Kitwood, 1997, p. 8). Furthermore, he accords an ethical status to every person; they have an absolute value and so there is an obligation ‘‘to treat each other with deep respect’’ (Kitwood, 1997, p. 8). A third dimension to his conception relates to the discursive presentation of the self as it exists, always already, in a social psychological milieu. Thus: ‘[personhood] is a standing or status that is bestowed on one human being, by another, in the context of relationship and social being’ (Kitwood, 1997, p. 8, emphasis added). Kitwood’s reaction against a notion of personhood derived from Cartesian formulations of mind and body, is a productive one, and one to be initially endorsed. A consideration that it is to the rational faculties that one should look to discover the essence of man—a

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consideration evinced by the philosophies of Kant and Locke, for example—forms part of this formulation. It is a consideration that permeates modern thought, manifested even in so disparate a field as cognitive science. What such bodies of thought uphold is the notion that it is reason and the internal capacities of the mind that are able to rationalise towards a concept of truth. These capacities then may remain distinct from the bodily perception of the external world that is otherwise fraught with ambiguity. On this account, autonomy and rationality become esteemed qualities, to the exclusion of feelings and emotions (Kitwood, 1997, p. 8). In opposition to this, Kitwood hopes to animate a discourse based on relationships, asserting the primacy of interpersonal intercourse. He retains an idea of the uniqueness of persons grounded in a social constructivist notion of the discursive production of self (Sabat & Harre! , 1992). This is to describe a self, experienced as a continuous ontology, associated with a sense of agency and position in the world. This essential self is then manifest through clusters of discursively produced personae. The conception here is of the self as an ontological nullpoint, a ‘formal unity’ (Sabat & Harr!e, 1992, p. 449), which exists independently, elided from social spaces. However, contingent upon the social space in which it finds itself at any given time, the self projects to construct a suitable persona. Kitwood understands the self to require that these presentations be nourished through their recognition and response by others. Thus, this intercourse sustains the self as a validated being in the fabric of social interaction. The general hypothesis, then, that underpins much of Kitwood’s work on dementia is that social psychological and neuropathological factors together effect what he terms a ‘dialectical process’ (Kitwood, 1997, p. 53). He calls for a radical departure from the purely scientific perspective of the dementing process and accords much greater emphasis to ‘malignant social psychology’ (Kitwood, 1997, p. 45). This is to say that he is concerned with how social process work to undermine people with dementia; he sees that such mechanisms provide a contributory role to the functional decline in dementia equal to that of putative neuropathological degeneration. Practical ramifications To recapitulate, Kitwood is very much concerned with the nature of being and personhood. He contends that personhood is a status that must be accorded to everyone, not least those disabled by dementia. He advances this perpetuity of self because he understands people as existing affectively in relational contexts. This emphasis on the relational aspects of personhood is key: for if a disease process causes an intellectual impairment,

it is possible for social relations to prevent this becoming a disability. Kitwood asks that we provide an environment that aids the expression and production of self, shut off as it is by dehumanising exclusion. Kitwood recognises that personhood can be undermined, and that this is effected by powerful sociological forces. The social dynamics that establish disability correspond to cultural conditions that perpetuate a wider disregard for personhood, a pervasive marginalisation of older age. For Kitwood, this culminates in the malignant social psychology, and he develops practice by focussing on opposing these effects through what he terms ‘positive person work’ (Kitwood 1997, p. 43). The reversing corrective that he provides is this: an unwavering commitment to the person with dementia to the last. He attempts to restructure the fractured field by providing an environment that is always already conducive to the articulation of one’s unique personhood. Yet this seemingly noble proposition creates negative repercussions, namely towards those who existed relationally with the person prior to the advent of disease. Kitwood directly implicates the untrained carer as being involved in the disabling process. ‘‘Even the kind and well-intentioned’’ are party to such destructive processes (Kitwood, 1997, p. 14). For the creation of exclusion is, he claims, ‘‘a defensive reaction, a response to anxieties held at an unconscious level’’ (Kitwood, 1997, p. 14). Kitwood draws attention to the foundation of such anxieties as being reflective of fear of our own frailty and mortality. He also notes that we have such little sense of community, and this only serves to compound our dread of isolating weakness. Furthermore, we fear the threat to our mental stability that dementia potentially presents (Kitwood, 1997, p. 14). In effect, Kitwood pre-empts any attempts to oppose his stance by using this charge of fear to support his wider claims that carers can be complicit in the undermining of personhood. Doubtless, Kitwood is correct to call for the humane treatment of people with advanced dementia. Furthermore, an enormous part of the feeling of safety and wellbeing of people will depend on environments that encourage rewarding relationships with others. However, the suggestion that a setting, sensitively enough prepared, can be created as a forum for the expression of the person that remains has important consequences. For a corollary of this is that if a carer feels that the person they had a relationship with exists no more, then they themselves are directly involved in the dissolution of personhood. Guilt compounds a bereavement that has not yet come to pass. Phenomenological dimensions The work of Kitwood’s group has undeniably transformed dementia care overwhelmingly for the

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better by advocating individual-centred care. However, phenomenology presents a challenge to his investment in the endurance of personhood in dementia. For this reason, revisions of his practice are warranted if it can be shown that we can better serve all parties that are involved with care of people with dementia, without compromising the experience of those being cared for. Philosophically, in positing an interplay between neurological impairment and social psychology, Kitwood is operating within a pseudo-scientific paradigm. Ultimately, this still has a certain reliance on positivist methodologies. His tenet that personhood can be meaningfully sustained is based on relational notions of people existing intersubjectively. Specifically, Kitwood charges conventional dementia care with an attitude of ‘‘coolness, detachment and instrumentality’’. He goes on to state that ‘‘it is a way of maintaining a safe distance, of avoiding risks; there is no danger of vulnerabilities being exposed’’ (Kitwood, 1997, p. 10). Instead, he tries to improve care by restructuring these damaging relationships so much so that a person with dementia can regain a sense of personhood, unique and enduring as ever. His Dementia Care Mapping attempts to hold onto a sense of self, and views those without memories to be merely disabled. But losing memories is not anything that can be so simply palliated. If a failure to construct meaning results from a disruption of sedimented structures, then the possibilities of ‘positive person work’ now appear to be inappropriate. Certainly his making the experience of advancing dementia a less detached one is compassionate. However, his trying to preserve personhood-without-memory, or rather, persons-without-awareness of their Being is more than a point of academic curiosity. The adverse consequences of his arguments concern family carers and how they may respond in their grief. That Kitwood’s vision has become so widely accepted provides an interesting sociological comment. Many people and institutions have found his approach very persuasive, suggesting that his model fulfils a need for us to favour certain views of dying and mental instability. For, while ostensibly advocating a personalised and relational approach, he is offering an idea of unimpeachable personhood, which sanitises the dying process (Lawton, 2000). Buying into this amounts to the acceptance of a false sense that selfhood is resistant even to dementiadisease rather than the idea that death can ultimately be a desolate event long after the self has eroded. Phenomenological revisions It is estimated that 80% of those with dementia are cared for in a family setting (Orona, 1990, p. 1247). As a family comes to realise the conditions that will be experienced, respective roles of primary caregiver and Alzheimer’s victim begin to emerge (Orona, 1990,

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p. 1253). Thus, as the impact of dementia becomes increasingly unmistakable, there is a concomitant bereavement in that the carer mourns the loss of a person who is not yet truly lost, and yet the person they were is no longer recoverable. It is clear that some elements of Kitwood’s practical work should continue to be developed in order to enrich the experience of the demented. His approach to removing socially debilitating obstacles has almost certainly improved the sense of present wholeness that might otherwise have eluded someone with dementia. However, he must allow for a loss of personhood, for to deny this is to denounce the legitimacy of primary carers who no longer recognise a spark of their former relationship. He concedes that dementia means that inevitably, the pre-existing rapport can no longer be dynamic in the same way. But in postulating that personhood can ultimately be sustained, he prevents the initiation of a grieving process that should begin with the involution of the sufferer. It should be clearer, then, on the provision of care by an institution, and the significance of such care, when responsibility is transferred. Exactly how nursing homes that specialise in care of dementia persons might operate is beyond the scope of this initial analysis. However, there should be a greater degree of courage in confronting the possible impropriety of life-extending treatments. More urgently though, the seductive nature of Kitwood’s arguments should be resisted so that debate can continue as to the status of people with dementia and how they are positioned with respect to their loved ones. But what is most important is that the devastation in relationships that crumble during the dementing process is better understood. The consequences of this must be recognised and a guiltless grieving be allowed. Perhaps even the expectation that those relations that are closest become ‘carers’ by default is destructive. Ultimately, there is a need attend to the responsibilities entailed by grounding the care that institutions can provide in reflexive philosophy.

Conclusion In trying to confront this subsumption of the self by dementia, it has been necessary first to elucidate the societal structures that determine its conception. By discerning those forces that shape the perception of dementia as a sociological phenomenon, much of the dread of dementia can be explicated. Once the contingency of some of the medical, social and philosophical claims regarding dementia is recognised, a more radical and sophisticated understanding may ensue— more responsible, more honest, and a little less unreflexive than current practices. Much consideration has been given to how best to care for those suffering the distressing loss of

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personhood that dementia presents. Yet somewhat overlooked remains the less welcome question as to what actually constitutes personhood, and what might remain of it after dementia sets in. Perhaps the philosophical starting point for any such discussion should be the fundamental question of ontology, rather than with the relations between subject and object-world that fall more conventionally within the epistemological realm. On this reading, Heidegger’s phenomenological view, disconcertingly for sure, suggests that the end point of the dementing process is an essential rending of Dasein’s way of being. This is a bleak conclusion indeed for the sufferer, but the consequences of enlisting relatives to the retrieving of a person long since gone is no less so. While it is imperative that the sufferer is treated with dignity until the close of their life, the relatives would do better to be removed from this final process. For then they might be allowed to determine with courage that there is nothing left of their past together in a way that grants them an opportunity to mourn. This critique of the sociological and philosophical foundations of dementia and dementia care might offer a way of approaching what is a very real dismantling of the self. There must be a greater honesty in excavating the groundings of professional and ageist power structures, for they are not so unshakeable as they might ostensibly appear. There must be a greater honesty in determining the violence that dementia does to the substance of the person and absolve those closest relations of the guilt of overseeing this decline. For the latter must be included, charged as they have been with their inadvertent complicity with socioneurological degeneration, in attempting to revise current conceptions of dementia and dementia care for the better.

Acknowledgements Many thanks to Julia Lawton for her engaged supervision, and enduring gratitude to Abbie Maxwell.

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