Academic journal article Family Relations

Preserving Personhood: (Re)membering the Spouse with Dementia

Academic journal article Family Relations

Preserving Personhood: (Re)membering the Spouse with Dementia

Article excerpt

Preserving Personhood: (Re)Membering the Spouse with Dementia*

Preserving the personhood of one's partner emerged as a guiding directive for spouses caring for a partner with dementia. On the basis of data from open-ended interviews with 38 husband and wife caregivers, four strategies that facilitate this directive were identified: maintaining continuity, sustaining existing competencies, protecting the partner from incompetence, and strategizing public encounters. From a social constructionist perspective, the focus on preserving the personhood of the partner with dementia promotes more holistic, person-centered care. However, when examined independently, each of the strategies used to achieve this goal can present both challenges and opportunities for the spouse caregiver.

Dementia is largely viewed as a progressive neurodegenerative disorder characterized by deteriorating cognitive abilities that cause the sufferer to experience increasing difficulty managing his or her day-to-day life (American Psychiatric Association, 1994). In this biomedical perspective, the term dementia covers a host of disorders, including Alzheimer's disease, that have a downward trajectory. Cognitive changes become so severe that ultimately the illness subsumes the individual. One essentially becomes a shell of the person one once was. Indeed, some have conceptualized the dementia experience as one in which the sufferer experiences a "loss of self" (Cohen & Eisdorfer, 1986; O'Connor, 1993).

Although there are documented physiological changes associated with dementia, the interpretation of the dementia experience as a loss of self draws implicitly on traditional conceptions of personhood. For example, within the philosophical literature, personhood has been associated with conditions of: consciousness (including consciousness of the self), rationality, intentionality, reciprocity, and ability to communicate (Buchanan & Brock, 1989; Dennett, 1976; Quinton, 1973 as quoted in Kitwood, 1997). Applying these conditions, the personhood of the individual with dementia necessarily becomes questionable. Specifically, the cognitive changes cause the discontinuity between past, present, and future, and the individual is perceived as increasingly incapable of rational, intentional behavior and thought. Stem (1985) noted that in the absence of memory, an individual cannot maintain any sense of history or continuity, and this connection between past and present is essential for the maintenance of a sense of self (Buchanan & Brock; Stem).

The dominant perspective that dementia is necessarily a linear, downward trajectory invariably leading to the loss of self is increasingly being challenged (Harding & Palfrey, 1997; Kitwood, 1997; Lyman, 1989). In particular, the ideas of social constructionism are being used to dispute this notion at least partially by challenging conventional ideas about personhood. A social constructionist view suggests that the primary loss of a sense of self, or one's personhood, results from the ways that others view and treat the dementia sufferer (e.g., Harding & Palfrey; Kitwood). Using this perspective, the experience of dementia is reconceptualized as an interactive, interpersonal experience in addition to a physiological condition where it is the attack on personhood, and not solely the physiological changes, that create the pessimistic prognosis.

The work of Kitwood and the Bradford Dementia Group has been particularly influential in advancing a social constructionist perspective of personhood. Personhood is a term Kitwood (1997) associates with self-esteem, the place of the individual in a social group, the performance of given roles, and the integrity, continuity and stability of the sense of self. Recognizing that many authors assume a common understanding of personhood, though in fact the term has multiple meanings and varied uses, Kitwood defined it as a "standing or status that is bestowed upon one human being by others, in the context of relationship and social being. …

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