Embodied selfhood: An ethnographic exploration of Alzheimer's disease

Abstract

Alzheimer's disease is regarded as the most bewildering and frightening condition facing the aging population in the twenty-first century (Schroeder et al. 1990) and represents a much feared stigmatizing label that carries with it the force of a sentence of social death (Robertson 1991). As Herskovitz notes, senility is characterized as "monstrosity" by the lay media with "cliched metaphors and representations in which Alzheimer's is characteristically drawn in colourfully dramatic terms that paint vividly disturbing images" (1995, 152-153). Alzheimer's is described as a living death, a never ending funeral, and a private hell of devastation. The source of the fear is found in much of the Alzheimer's literature in which individuals with dementia are said to experience a steady erosion of selfhood as a consequence of the cognitive deficiencies that lie at the core of the illness (Cohen and Eisdorfer 1986; Mills and Walker 1994). As Fontana and Smith state, with advancing Alzheimer's, what is actually happening is that the self is becoming "increasingly devoid of content" (1989,36). It is, they say, "unbecoming a self." Others echo these sentiments by describing Alzheimer's as a disease that "eradicates the essence of the person" (Dalziel 1994,1407), as a process of "drifting towards the threshold of unbeing" (Kitwood and Bredin 1992, 285). Thus, while Alzheimer's is usually described and analyzed in terms of the cognitive dysfunction it produces, there is, as well, a presumed existential outcome: the loss of self with the concomitant erosion of individual agency (Davis 2004; Herskovitz 1995; Ronch 1996). This presumed loss of selfhood is itself a product of the Western assumption that status as a full human being is completely dependent upon cognition and memory, both of which become impaired with advancing Alzheimer's: "Alzheimer's disease represents the loss of all those qualities by which we have come to define our humanness" (Robertson 1991, 143). This representation of personhood is itself the legacy of Western philosophy's tendency to split mind from body and to position the former as superior to the latter. In contrast to the Cartesian mind/body dualism, in which human meaning and selfhood are attributed to the mind, I propose to integrate Maurice Merleau-Ponty's (1962) radical philosophical reconceptualization of perception and Pierre Bourdieu's (1977,1990) sociological exploration of the logic of practice, yielding a theoretical framework that captures the existential immediacy of the body as well as its interrelationship with culture and history (Kontos 2003). The central aim of this chapter is to explore how this proposed theoretical framework that advocates the irreducibly embodied nature of agency brings a new and critical dimension to the challenge of the presumed loss of personhood in Alzheimer's and, more broadly, to the Western representation of personhood that hinges on cognition and memory. To do so, I will analyze, from the perspective of embodiment that I advocate here, findings drawn from an ethnographic study of an Alzheimer's support unit of a Canadian home for the aged.