Politics, Policy and Identity: Who is the Person
in Person-Centered Care?
Patrick Fox, Ph.D.
Professor Emeritus
Institute for Health & Aging
Department of Social and Behavioral Sciences
University of California
San Francisco, CA 94143-0646
Senior Access Advisory Committee
7 November 2014
To say that somebody suffers from senile dementia,
Alzheimer’s disease (AD) considered as the most prevalent form,
appears straightforward. Hardly a week goes by without some major
mass media outlet warning the public about the impending collision of
an aging population and AD, a costly and devastating disease,
affecting around 24 million individuals worldwide, predicted to rise to
42 million by 2020 and to 81 million by 2040 (Ballard et al., 2011).
The disease is characterized as “ceaselessly kill(ing) brain cells,
eventually leaving people mute, incontinent, unaware of who they or
their family and friends are”(Kolata, 2010).
Despite these sobering numbers and catastrophic predictions,
that some have labeled a case of “apocalyptic demography”
(Robertson, 1990, p. 429), as late as the mid-1960s few had
heardabout AD or would have anticipated that it would become “one
ofthe ten leading causes of death in the United States,
[evensurpassing] diabetes as “the sixth leading cause of death
amongAmerican adults” (Centers for Disease Control and Prevention,
2009). What brought about this transformation? How has it shaped
the experience and needs of individuals affected by dementia? What
are its implications for aging policies generally?
2
Beginning in the early 1970s the transformation of senility into
AD began in earnest. What had for over 70 years prior been seen as
a rare form of pre-senile dementia, was reconstituted into the most
prevalent form of senile dementia, a “major killer,” and a significant
threat to the well-being of elderly people and their families. This
conceptual and operational transformation was critical to the
consolidation of a social movement born from the grievances of those
living with a variety of dementing disorders and their families, whose
concerns and needs had been largely neglected. The transformation
helped movement participants demand that society acknowledge the
challenges posed by the cognitive changes that often accompany
aging, and that services to cope with these changes be made
available.
From the point of view of individuals involved in redressing
collective grievances through disease-based social movements,
which generally draw from the authority of medical definitions
(Archibald & Crabtree, 2010), the effects of medical labels are mixed.
Medical labels may operate as instruments of empowerment and
social recognition that allow individuals to legitimize their grievances
in their own and others’ eyes (Nettleton, 2006). They may also
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operate as instruments of professional expansion, social control, and
corporate dominance, serving to pathologize human conditions,
unduly reinforce gender norms, or persuade the public that technical,
rather than structural, solutions are what is needed to address major
health concerns whose roots may be social and political in origin
(Chaufan, 2007; Figert, 1995; Rodin, 1992). Or they may be
ambiguous, operating as “double-edged swords” as they help
legitimize grievances yet simultaneously serve professional
expansion and status quo power relations such that original
grievances may be neglected and ultimately remain unaddressed.
Chronic illness can require various identity adjustments; if roles
deemed characteristic diminish or disappear, then a sense of self
must be actively reconstructed (Strauss, 1959). With notable
exceptions, longitudinal depictions of identity construction for people
with dementia do not exist (Clare, Roth, & Pratt, 2005; MacQuarrie,
2005). Studies of dementia have historically been based on
biomedical and psychological models of pathology without regard for
the social interactions or socio-cultural contexts within which such
conditions occur (Downs, 2000; O’Connor et al.,2007).
Researchers and affected families have been at the forefront of
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shaping policy responses to AD and other dementias since the
1980s, when the disease model of dementia gained greater
prominence in western culture (Beard, 2004; Fox, 2000; Fox, Kelly, &
Tobin, 1999; Holstein, 2000). As a consequence of what has been
called the ‘‘health politics of anguish’’ (Butler, 1986), awareness of
dementia such as AD in the United States has largely been driven by
characterizations of the burden on care partners and society, with
stressors on the former being a common focus of attention.
Designations such as ‘‘the unraveling of self’’ and a ‘‘slow death of
the mind’’ demonize the disease to focus public attention and political
support to address the problem.
In the United States, advocacy is primarily focused on
increasing funding for biomedical research with the hope of finding
effective treatments, and even a cure, for this ‘‘dread disease’’
(Fox,1989). These efforts have predominantly been by proxy, with
advocacy coming not from individuals with dementia but rather
invested others.
Despite a number of autobiographies depicting the experiences
of individuals living with Alzheimer’s (Davis, 1989; DeBaggio, 2003;
McGowin, 1994; Rose,1996), personal experiences were historically
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marginalized or depicted third-person (Braudy Harris, 2002; Mills,
1997; Usita, Hyman, & Herman, 1998; Vittoria,1998). Assumptions
that it was impossible to ascertain the views of people with dementia
resulted in few attempts to understand how people so affected
perceive the world around them (Downs, 1997, 2000; Bender &
Cheston, 1997). Contemporary efforts to enhance communication
and involvement, however, have demonstrated the enduring ability of
people living with dementia to meaningfully interact (Allen & Killick,
2000; Wilkinson, 2001), despite stigma resulting from their inability to
navigate the social world in a manner deemed normatively
acceptable by others.
The exclusion of people with AD from discourse concerning
their experiences has historically stemmed from a ‘‘social
disenfranchisement’’ that has arisen from at least three sources: (1)
in social arenas, from the difficulties family members have accepting
and understanding the changes in their loved ones; (2) in political
arenas, by the demonization of the disease as a result of advocacy
efforts aimed at increasing awareness of, and research funding for,
the condition; and (3) in scientific arenas, by its objectification
wherein biological and behavioral features of Alzheimer’s are reduced
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to their component parts in an effort to unlock it’s complex mysteries
(Shabahangi, Faustman, Thai & Fox, 2009).
These social forces have highlighted the interdependence of
social relationships in bestowing the status of ‘‘personhood’’ on
others. Tom Kitwood (1997) appealed for culture change focused on
‘‘person-centered’’ care due to the limiting or eliminating of
traditionally proscribed privileges when individuals with dementia are
deemed unable to function in socially appropriate ways. This
‘‘malignant social psychology’’ (Kitwood, 1997) can result in ‘‘excess
disability’’ (Sabat, 2001), whereby the detrimental actions and words
of others unnecessarily constrain the lives of diagnosed individuals to
a restricted range of social roles (Kitwood & Bredin, 1992).
The ‘‘loss of self’’ associated with dementia, especially of the
Alzheimer’s type, has been a dominant trope in America, reflecting a
postmodern disorientation and skepticism regarding time honored
conceptions of the coherence and rationality of time, space, and
personhood (Ballenger, 2006). Some argue that through deep
philosophical roots in modern science, Alzheimer’s and its symptoms
came to represent an erasure of personhood (Kontos, 2004). Since
being positioned as a member of a socially undesirable group can
7
cause stigmatization (Goffman, 1963), the resultant focus has
become the disease and its manifestations rather than interactional or
experiential aspects of living with dementia.
Noteworthy narrative efforts include Gloria Sterin’s (2002)
account of the lived experience of AD, which calls for a ‘‘reframing’’ of
Alzheimer’s as an obstacle rather than an end, and Christine
Bryden’s (2005) story of ‘‘living positively with dementia.’’ These
perspectives challenge the notion that diagnosed individuals become
a hollow shell by positioning people with dementia as ‘‘situated
embodied agents’’ (Hughes, 2001); personhood is not defined by
consciousness of thought rather it is a corporeal dimension of human
existence (Kontos, 2004).
Therefore, dementia is an embodied breakdown, with the most
severely impaired living in a world that simply does not appear
meaningfully structured (Phinney & Chesla, 2003). The preservation
of human dignity in the face of dementia is critical, because
characterizations that serve political or scientific ends do not
sufficiently represent the phenomenology of living with the cognitive
and experiential changes associated with these conditions.
The question of what is undesirable about dementia can be
8
answered in part by one of the social trends noted earlier that
contribute to the demonization of dementias such as Alzheimer’s
disease—that is, difficulties forgetful people and family members
have in understanding and accepting the changes in their own and
their loved one’s identity wrought by dementia.
But what is this phenomenon called identity? It’s who we are,
we say. And we know how rich and complex we are. When asked to
identify ourselves, we often say, I am a man/woman, this young or
old, live here or there, have this job, like this or that food, am with this
or that person. Yet we also know that these describe only a small
part of who we are. When we are in an intimate relationship, we
speak less of these demographic facts and focus more on what is not
as obvious: our dreams, desires, ambitions, vulnerabilities, and
hopes. These less obvious characteristics also form part of who we
are—the most important part, many would say.
Thus, we see at least two aspects of how we define our
individuality: a public, objective way and a private, subjective way. As
Georg Simmel noted: “Although this individuality cannot, on principle,
be identified by any name, it surrounds our perceptible reality as if
traced in ideal lines. It is supplemented by the other’s view of us,
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which results in something that we are never purely and wholly. It is
impossible for us to see anything but juxtaposed fragments, which
nevertheless are all that really exist” (Simmel, 1971, p. 11).
I simply want to point out how malleable this concept of identity
is and how it may only partially be related to our ability to remember.
In fact, certain parts of our identity might even benefit from forgetting.
Forgetting may allow for other, deeper parts of our identity to come to
the foreground, parts our remembering keeps forgetting. Thus the
stories behind identity, behind remembering and forgetting, are not
fixed but fluid; they depend much on our vantage point, our priorities,
and our lives (Shabahangi, Faustman, Thai & Fox, 2009).
Understanding the experience of dementia is complex, but
unfortunately what has, until very recently, been largely left out of the
discourse on AD is the experience of the individual who has
forgotten. But thinking about this in a broader context of potential
meanings may help us to expand our horizons of the role of medicine
and science in influencing our conceptions of health, and even our
notions of the variety of experiences that define our humanity as
social beings living in the community of others. What we may accept
as taken-for-granted may need to be challenged so that as a society
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we are individually and collectively opened to understanding
difference and the diversity of experience as something to be
embraced rather than stigmatized.
The recasting of senility as predominately AD, and of AD as a
major American social problem and public health threat has implicitly
established a race against the demographic clock, which pits desired
advances in developing effective treatments or a cure for dementias
against the aging of the population, the primary driving force behind
the expansion of the number of people anticipated to be living with
dementia and requiring supportive services in the near future.
The timeline for the race is approximately 30 years, during
which a substantial majority of the baby boom generation will reach
advanced age. Yet the fruits of scientific research that can be
translated into effective treatments or a cure for AD are a difficult
outcome to predict.
In the meantime, the biomedical model can lead to a “cult of
expertise”, where presumably objective, neutral and nonpolitical
problem definitions support decisions requiring professional or
technical judgments that exclude laypersons from meaningful
participation in decisions concerning the distribution of resources
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(Estes, 1979). This model also tends to exclude alternative problem
definitions that conceptualize a variety of conditions not as individual
dysfunctions, but as the product of interactions between physical and
mental capabilities and social environments (Barnartt, Schriner, &
Scotch, 2001).
One such alternative definition of AD proposes to drastically
change how we think about dementia, and about aging in
contemporary society more generally, a shift that necessarily leads to
substantially different forms of attending to the needs of people living
with dementia and their families. Experiential and other relationshipcentered models of dementia are alternatives to the biomedical one,
and emphasize being and humanity over cognition (Kitwood & Bredin,
1992). They conceptualize dementia as “a shift in the person’s
perception of his or her world” and abandon the idea of “managing”
its behavioral expressions and returning individuals to as “normal” as
state as possible, in favor of adapting the environment to the needs of
the person with dementia rather than the other way round (Power,
2010, p. 79). Because only when the respect for the humanity of all
persons becomes a source of legitimacy in its own right can multiple
approaches be brought to bear to better address the needs of both
12
people living with dementia and those that accompany them on their
journey.
13
References
Allen, K., & Killick, J. (2000). Undiminished possibility: the arts in
dementia care. Journal of Dementia Care, 8(3), 16e18.
Archibald, M. E., & Crabtree, C. (2010). Health social movements in
the United States: an overview. Sociology Compass, 4(5), 334e343.
Ballenger, J. (2006). Self, senility, and Alzheimer’s disease in modern
America: A history. Baltimore, MD: The Johns Hopkins University
Press.
Ballard, C., Gauthier, S., Corbett, A., Brayne, C., Aarsland, D., &
Jones, E. (2011). Alzheimer’s disease. The Lancet, 377(9770),
1019e1031.
Barnartt, S., Schriner, K., & Scotch, R. (2001). Disability and political
action disability protests: contentious politics, 1970e1999. In S.
Barnartt, & R. Scotch (Eds.) (pp. 430e449). Washington, DC:
Gallaudet University Press.
Beard, R. L. (2004b). Advocating voice: organisational, historical,
and social milieu of the Alzheimer’s disease movement.
Sociology of Health & Illness, 26(6), 797e819.
Bender, M., & Cheston, R. (1997). Inhabitants of a lost kingdom:
a model of the subjective experiences of dementia. Ageing and
Society, 17, 513e532.
Braudy Harris, P. (Ed.). (2002). The person with Alzheimer’s disease:
Pathways to understanding the experience. Baltimore, MD: The
Johns Hopkins University Press.
Bryden, C. (2005). Dancing with dementia: My story of living
positively with dementia. London: Jessica Kingsley Publishers.
Butler, R. Personal interview (with P. Fox), May 23, 1986.
Centers for Disease Control and Prevention Alzheimer’s Disease.
14
Atlanta, Department of Health and Human Services:
http://www.cdc.gov/aging/healthybrain/alzheimers.htm Accessed
01.05.09
Clare, L., Roth, I., & Pratt, R. (2005). Perceptions of change over
time in ESAD: implications for understanding awareness and
coping style. Dementia, 4(4), 487e520.
Davis, R. (1989). My journey into Alzheimer’s disease. London:
Tyndale House Publishers.
DeBaggio, T. (2003). Losing my mind: An intimate look at life with
Alzheimer’s. New York: Free Press.
Downs, M. (1997). Progress report: the emergence of the person with
dementia research. Ageing & Society, 17, 597e607.
Downs, M. (2000). Dementia in a socio-cultural context: an idea
whose time has come. Ageing & Society, 20, 369e375.
Estes, C. (1979). The aging enterprise. San Francisco: Jossey-Bass
Publishers.
Figert, A. E. (1995). The three faces of PMS: the professional,
gendered, and scientific structuring of a psychiatric disorder. Social
Problems, 42(1), 56e73.
Fox, P. (2000). The role of the concept of Alzheimer’s disease in the
development of the Alzheimer’s Association in the United States.
In P. Whitehouse, K. Maurer, & J. Ballenger (Eds.), The concept
of Alzheimer’s disease: Biological, clinical, and cultural perspectives
(pp. 209e233). Baltimore, MD: The Johns Hopkins
University Press.
Fox, P. J. (1989). From senility to Alzheimer’s disease: the rise of the
Alzheimer’s disease movement. Milbank Quarterly, 67(1), 58e102.
Fox, P., Kelly, S., & Tobin, S. (1999). Defining dementia: social and
historical background of Alzheimer’s disease. Genetic Testing,
3(1), 13e19.
15
Goffman, E. (1963). Stigma: Notes on the management of spoiled
identity. Engelwood Cliffs, NJ: Prentice-Hall, Inc.
Holstein, M. (2000). Aging, Culture, and the Framing of Alzheimer’s
Disease. In P. Whitehouse, K. Maurer, & J. Ballenger (Eds.), The
Concept of Alzheimer’s disease: Biological, clinical, and cultural
perspectives (pp. 158e180). Baltimore, MD: The Johns Hopkins
University Press.
Hughes, J. C. (2001). Views of the person with dementia. Journal of
Medical Ethics, 27, 86e91.
Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia
care: personhood and wellbeing. Ageing & Society, 12, 269e287.
Kitwood, T. (1997). Dementia reconsidered: The person comes first.
Buckingham: Open University Press.
Kolata, G. (2010). Years later, no magic bullet against Alzheimer’s
disease. The New York Times August 28:
http://www.nytimes.com/2010/08/29/health/research/
29prevent.html?pagewanted.print.
Kontos, P. C. (2004). Ethnographic reflections on selfhood,
embodiment and Alzheimer’s disease. Ageing & Society, 24,
829e849.
MacQuarrie, C. R. (2005). Experiences in early stage AD:
understanding the paradox of acceptance and denial. Aging &
Mental Health, 9(5), 430e441.
McGowin, D. (1994). Living in the labyrinth: A personal journey
through the maze of Alzheimer’s. New York: Delta.
Mills, M. (1997). Narrative identity and dementia: a study of emotion
and narrative in older people with dementia. Ageing & Society,
17, 673e698.
Nettleton, S. (2006). ‘I just want permission to be ill’: towards a
16
sociology of medically unexplained symptoms. Social Science &
Medicine, 62(5), 1167e1178.
O’Connor, D., Phinney, A., Smith, A., Small, J., Purves, B., &
Perry, J., et al. (2007). Personhood in dementia care: developing
a research agenda for broadening the vision. Dementia, 6(1),
121e142.
Phinney, A., & Chesla, C. A. (2003). The lived body in dementia.
Journal of Aging Studies, 17, 283e299.
Power, G. A. (2010). Dementia beyond drugs: Changing the culture
of care. Baltimore, London, Sydney: Health Professions Press.
Robertson, A. (1990). The politics of Alzheimer’s disease: a case
study in apocalyptic demography. International Journal of Health
Services, 20(3), 429e442.
Rodin, M. (1992). The social construction of premenstrual syndrome.
Social Science & Medicine, 35(1), 49e56.
Rose, L. (1996). Show me the way to go home. San Francisco: Elder
Books.
Sabat, S. R. (2001). The experience of Alzheimer’s disease: Life
through a tangled veil. Oxford: Blackwell Publishers Ltd.
Shabahangi, N., Faustman, G., Thai, J. N., and Fox, P. (2009)
Some Observations on the Social Consequences of Forgetfulness
and Alzheimer's Disease: A Call for Attitudinal Expansion. Journal of
Aging, Humanities, and the Arts, 3(1): 38-52.
Simmel, G. (1971). How is society possible? In D. Levine (Ed.),
Georg Simmel on individuality and social forms (pp. 6–40). Chicago:
University of Chicago Press.
Strauss, A. L. (1959). Mirrors and masks: The search for identity.
New York: Free Press.
Sterin, G. (2002). Essay on a word: a lived experience of AD.
17
Dementia, 1(1), 7e10.
Usita, P. M., Hyman, I. E., & Herman, K. C. (1998). Narrative
intentions: listening to life stories in Alzheimer’s disease. Journal
of Aging Studies, 12(2), 185e197.
Vittoria, A. K. (1998). Preserving selves: identity work and dementia.
Research on Aging, 1, 91e136.
Wilkinson, H. (Ed.). (2001). The perspectives of people with
dementia: Research methods and motivations. London: Jessica
Kingsley Publishers.
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