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Dementia: Sociological and philosophical

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 ARTICLE IN PRESS

Social Science & Medicine 58 (2004) 369378

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 renement 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 Kitwoods 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 motivation. This syndrome occurs in Alzheimers

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 neurobrillary 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 inter-
nationally agreed upon denition:
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, lan-
guage, and judgement. Consciousness is not clouded.
Impairments of cognitive function are commonly
accompanied, and occasionally preceded, by dete-
rioration in emotional control, social behaviour, or
E-mail address: d.h.j.davis@sms.ed.ac.uk (D.H.J. Davis).
disease, in cerebrovascular disease, and in other
conditions primarily or secondarily affecting the
brain. (WHO, 1994, p. 47)
Denitions inevitably present certain problems con-
sequent on the very nature of prescription. However,
medical denitions, and particularly the denition of a
phenomenon as all pervasive as dementia, can be even
more problematic given the singularity of medicines
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 ramications into these
areas beyond itself. A critique of medical denitions,
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, reects back
upon the medical practices that have issued from the
original denition.
Central to this exposition of the sociological con-
struction 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).

0277-9536/03/$ - see front matter r 2003 Elsevier Science Ltd. All rights reserved.
doi:10.1016/S0277-9536(03)00202-8
 ARTICLE IN PRESS
370 D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
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-Pontys 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 power-
fully sustained through their being able to produce an
image of dementia that society, on the whole, might nd
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 Foucaults exposi-
tion of the contingent formulation of disease and the
corresponding problematisation of dementia, prepara-
tion can be made for a more progressive conception of
this phenomenon.
Emergence of the anatomo-clinical gaze
Foucaults genealogy of Western pathological medi-
cine looks back, historically and culturally, to the
scientic 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 rst 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
nd its origin, surface, hitherto a structure of the
onlooker, had become a gure 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 epistemolo-
gical structures of a given moment of discursive
formation, in this case, the ascendancy of scientic
positivism. He views scientic epistemology as sanction-
ing 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
producein the form of scientic thoughtdenitions
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 specicity 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,
Alzheimers original description of the disease was
conceived within a framework whereby ageing was seen
as a series of identiable 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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D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
p. 149). Accordingly, the classication of Alzheimers
observed histopathology was to dene 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 micro-
scope revealed further details of the histological changes
in Alzheimers dementia. This raised questions regard-
ing the validity of the distinction of Alzheimers 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 Alzheimers disease was erroneous
on scientic grounds (Robertson, 1990, p. 433). This
revised designation of dementia, one now that encom-
passed the senility of old age, opened up the possibility
of nding 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 articulatedythe 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 elds of knowl-
edge, and this knowledge reexively 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 strategistthe
person of the sovereigny[with which] political theory
is obsessed (Foucault, 1980, p. 121)but a force that
induces pleasure, forms knowledge, produces dis-
course (Foucault 1980, p. 119). Thus, Foucaults
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
afrms 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
ofces, censuses, and so forth. In terms of the
371
population itself being an object of scientic investiga-
tion, 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 rst
director of the NIA indicates how he was interested in
claiming Alzheimers disease as a major research area
for the NIA: I decided that we had to make it
[Alzheimers 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 formula-
tion 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 inuences 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, under-
mined 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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372 D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
identication 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). Scientic clinico-
pathology 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 dene a specic set of bodily norms and
pathologies that dissociated general health from nor-
mal 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 degen-
erative 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
Foucaults 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 organisms
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 reects a potential to
adapt actively to new environments, the pathological
becomes that which proves less able to be exible 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 circum-
stances, hints at the sociological determinant to health in
ageing. From outside the focus of the medicalising gaze,
the general circumstances themselves can be interro-
gated. The pathological is not the absence of a
biological norm; it is another norm but one which is,
comparatively speaking, pushed aside by life (Canguil-
hem, 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 eld 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 problematisa-
tions through which being offers itself to be, necessarily,
thoughtand 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 problema-
tisation as a biomedical disease, the phenomenon itself
becomes inescapably embedded in sociological dis-
course.
Problematisation doesnt mean representation of a
pre-existing object, nor the creation by discourse of
an object that doesnt 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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D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
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 reects on the world, and abstract reason is
sufcient 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
scientic 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 Heideggers analysis (1990), the question
might be asked: what does it mean for something to be?
More specically, 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 meaning-
fully 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 sufciently
theorised. Consistent with this, the modern scientic
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 inhabitsis objectively
framed, the substance of the mind, however, remains
separate, isolated and unlocatable. From the mind alone
373
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 objecti-
cation of the external world has allowed it to be shown
up in a series of measurable properties, resulting in
calculations, descriptions and predictions. While expli-
cating the world, however, this method falls short of
providing a full understanding of it (Dreyfus, 1991).
Similarly, the objectication 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 Heideggers 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 (Sten-
ner, 1998, p. 65). Heidegger suggests that enframing this
notion of Being across such debates only serves further
to prioritise epistemologies of selfi.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 Daseins
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
rst place. He suggests that this kind of reexive
questioning indicates that we should already have an
understanding of Being, a pre-ontological awareness,
and this is the rst approximation for Heideggers
investigation. This condition of care, caring about ones
existence, is central to the various features that
Heidegger eventually maps out as modes of Dasein.
Because care is so crucial to Heideggers 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
 ARTICLE IN PRESS
374 D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
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
Daseins Being-alongside (entities encountered within-
the-world) reminds us of Daseins occurrent engage-
ment with the world.
Heidegger offers a temporal aspect to being that
accords signicance to Dasein. Daseins Being nds 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 nal horizon. For Heidegger, an awareness that
Dasein can die at any time congures its attitude from
the outsetBeing 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 reexive self-awareness, distinguishing the world-
constituting 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 becomingnot
dened as a metaphysics of presence (Stenner, 1998,
p. 72), but as a contextualised and temporalised aware-
ness 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 fundamen-
tally different from the Cartesian notion of the body as
an object of possession. The phenomenological perspec-
tive 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 life-
world. 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 Heideggers
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
signicance, integrated into the existential realm. These
elds are effectively related by virtue of a primordial
contract between them, and are always already in
existence (Merleau-Ponty, 2002, p. 251). The body-
subject, the experiencer, is incarnate and the nullpoint of
the perceptual eld. According to Merleau-Ponty, then,
experiencing, moving, thinking are neither activities of a
cogito, nor of objects, but are modes of beinga
necessary pre-thematic layer, the very pre-condition for
a conscious Dasein (Tiemersma, 1983).
As the centre of ones experiential eld, 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 worlds 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-eld. Pre-
thematic knowledge forms a practical system, function-
ing in a coordinated and dynamic way: perceptual and
movemental (Merleau-Ponty, 2002, pp. 171177).
Furthermore, these schemas are not integrated in an
individual and isolated way: there is a wider social eld
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
contextforeground against backgroundreferenced
to a horizon. At its most fundamental level, Merleau-
Pontys analysis of our perceptual experience reveals
that indeterminacy is an ineluctable part of our Gestalt
existing-in-relation to the world. Our perceptual experi-
ence begins, pre-reective, 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 signicance (Merleau-Ponty, 2002, p. 7, em-
phasis added).
Here, Merleau-Ponty is describing the importance of
conscious reection in collapsing the phenomenal eld
into a conguration that expresses something mean-
ingful. The background horizon constantly shifts, before
reection, just as the unconcerned eye does not settle on
one formation of the Necker cube, or of the opposed
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D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
faces/goblet in the related Gestalt image. As this
equivocal hypostasis requires reective 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. Reected experience,
then, is only determinate and crystalline because context
enframes meaning and sense-making throws the sig-
nicant 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 bodyactive residuals of ones intentional-
body 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-reective body practices, and from our
affective existence, one can abstract signicance. Thus,
with Heidegger, the nal and fundamental horizon is
death, and because of this, ones unique operations in
the world are still imbued with signicance.
Fracture: the rending of understanding
As Merleau-Ponty hints at above, in illness the body-
schema is disturbed. We doubt our own dimensions,
distrust our capabilities, and a disintegrating cognition
erodes our Being-in-the-world. Impairment of the body-
schema 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 eld 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 de-
scribes dementia as being primarily a cognitive psychia-
tric 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
375
advances and unfolds, even the awareness of Being-
towards-death dissipates. Outside of an understanding
of time and Dasein, there is an irrevocable disjunction in
Daseins mode of being so that it is no longer Dasein.
Thus, the consequence of a phenomenological ap-
proach 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 phenomenol-
ogy, 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, Daseins claims to being
become destabilised and ultimately, no longer sustain-
able; its mode of being has irrevocably broken down any
meaningful awareness. On these grounds, current con-
ceptions of dementia care can be critiqued.
An enduring personhood
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 Kitwoods totalising premise is that a person
with dementia remains as a person throughout their
disabling experiences.
Thus, in contrast to Heideggers 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: [person-
hood] 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).
Kitwoods 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 mana
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376 D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
consideration evinced by the philosophies of Kant and
Locke, for exampleforms part of this formulation. It
is a consideration that permeates modern thought,
manifested even in so disparate a eld 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 nds 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
Kitwoods 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 scientic
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 environ-
ment that aids the expression and production of self,
shut off as it is by dehumanising exclusion.
Kitwood recognises that personhood can be under-
mined, 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 margin-
alisation 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 eld by
providing an environment that is always already
conducive to the articulation of ones unique person-
hood.
Yet this seemingly noble proposition creates negative
repercussions, namely towards those who existed rela-
tionally 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 reective 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. Further-
more, an enormous part of the feeling of safety and well-
being of people will depend on environments that
encourage rewarding relationships with others. How-
ever, 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 Kitwoods group has undeniably
transformed dementia care overwhelmingly for the
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D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
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, Kit-
wood is operating within a pseudo-scientic 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. Specically, Kit-
wood 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, per-
sons-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 Kitwoods 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 fulls 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 dementia-
disease 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
Alzheimers victim begin to emerge (Orona, 1990,
377
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 Kitwoods 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 signicance 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 Kitwoods
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 reexive philosophy.
Conclusion
In trying to confront this subsumption of the self by
dementia, it has been necessary rst 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 con-
tingency of some of the medical, social and philosophi-
cal claims regarding dementia is recognised, a more
radical and sophisticated understanding may ensue
more responsible, more honest, and a little less unre-
exive than current practices.
Much consideration has been given to how best
to care for those suffering the distressing loss of
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378 D.H.J. Davis / Social Science & Medicine 58 (2004) 369378
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 conven-
tionally within the epistemological realm. On this reading,
Heideggers phenomenological view, disconcertingly for
sure, suggests that the end point of the dementing process
is an essential rending of Daseins way of being. This is a
bleak conclusion indeed for the sufferer, but the con-
sequences 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 nal
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 concep-
tions 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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