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10. Narrative Practice and the Inner Worlds of the Alzheimer Disease Experience
- Johns Hopkins University Press
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10 Narrative Practice and the Inner Worlds of the Alzheimer Disease Experience Jaber F. Gubrium Alzheimer disease has been formally recognized as a diagnostic category for nearly a century, dating back to the case history of a 51-yearold female patient, Auguste D., presented by physician Alois Alzheimer at a meeting of German psychiatrists in 1906. The case was ‘‘peculiar’’ because signs of dementia were being exhibited at an unusually young age. This so-called presenile dementia took the name of its discoverer and became known as ‘‘Alzheimer disease,’’ or AD. Decades later nosologic developments established AD as a dementia of ‘‘the Alzheimer type,’’ which virtually eliminated the age distinction and further designated AD as one of several other forms of dementia (Wells 1977). As a matter of routine diagnostic practice, however, AD is of more recent vintage. Until the 1970s, AD was not much of a working diagnosis . My own ethnographic fieldwork in U.S. nursing homes at the time indicated that organic brain syndrome (OBS) and cerebral vascular accident (CVA) were the recorded diagnoses for elderly patients with debilitating dementia symptoms. Rarely if ever was AD listed on patient records (Gubrium 1997 [1975]). As an illness category used by family members, dementia sufferers, and the public at large, AD was effectively born in the late 1970s along with the founding of what was then called the Alzheimer’s Disease and Related Disorders Association, or ADRDA 182 Jaber F. Gubrium (now the Alzheimer’s Association). The rapid growth in public awareness of the disease was accompanied by huge increases in funding for research and service provision. As Philip Stafford put it, ‘‘Clearly, something has happened to carve out cultural space for a disease which, prior to 1970, was practically unheard of’’ (1992, 168). This chapter deals with this cultural space as it was ordinarily articulated in the narratives of service providers, family members, and significant others of those afflicted with AD in the 1980s. It was the period in which the future of AD was being formed at the level of everyday life. In accordance with the ‘‘two victims’’ theme of the disease movement, the chapter considers how folk understandings were used to construct two inner worlds—the disintegrating mind of the disease sufferer, and the developing thoughts and feelings of the caregiver. THE NARRATIVE MATERIAL For over three years in the early 1980s, I conducted fieldwork in local chapters of the ADRDA in two North American cities. At the same time I participated in, and systematically observed, the proceedings of various support groups for caregivers. Some of the support groups were formally sponsored by the ADRDA; others were either hospital-based or had other institutional affiliations. In one of the cities, fieldwork was also conducted in a day-care center for dementia sufferers (Gubrium 1986a). The analysis in this chapter centers on some of the social processes at work in the support groups based on the theme that cultural understandings resonate with experience through storytelling. The illustrations presented are drawn from narrative material collected in four support groups; they represent a small part of the larger study from which the findings are derived—which, in turn, is a fraction of what has become a network of over 2,000 support groups nationwide. Participants in the groups were usually the spouses, adult children, or other close relatives of dementia sufferers. Most were elderly themselves . Spouses tended to be in their 70s and 80s; adult children were typically in their 50s or 60s. A few significant others, such as long-time friends and neighbors, participated, and they too were up in age. On rare occasions a grandchild who had taken on the responsibility for caring for a demented grandparent would attend. While most participants cared for their demented relative at home, a few continued to attend after the relative was placed in a nursing home. This continued attendance was attributed to a desire to help others in their former circumstances, a continued need for support from the group, or the [18.208.203.36] Project MUSE (2024-03-19 14:06 GMT) Narrative Practice and Inner Worlds of the Experience 183 assumption of the role of group facilitator. Although most participants were women, some husbands and adult sons did attend, and many exhibited great enthusiasm for the understanding they received. All groups were moderated by a facilitator, either a veteran caregiver or a volunteer service professional, usually a nurse or a social worker. The facilitator’s function...