(Social) Location Matters: Phenomenology of Alzheimer's Disease

• In Event: 499 - Section on Aging and the Life Course Roundtable Session.
  In Refereed Roundtable: Table 05. Illness and Disability Experience

Abstract

This talk outlines the major trends in the relatively nascent literature base on Alzheimer’s narratives, highlighting the shortcomings and suggesting future areas of study. In particular, the discussion makes a call for including more sociological analysis, namely attention to social location, in research on the individuals’ changing perspectives in AD, or AD narratives, which has heretofore been dominated by a decidedly pejorative, caregiver-focused and behavioral science framing. Drawing on ten years of empirical research, the paper argues that rather than assuming that illness experiences can be universalized, variables such as race/ethnicity, marital status, class, gender, religiosity, and age as well as the roles of mass media and medicine; that is “social location,” matters deeply in how AD is interpreted and experienced. The discussion concludes by proposing that psychosocial studies of the topic need to systematically explore at least six areas: 1) comprehensive illness narratives, including the potential positive aspects, 2) the role of sociodemographic variables, 3) the narrative transformations throughout the illness trajectory, 4) the bioethical implications of trends toward diagnostic expansion, 5) the impact of structural forces like mass media and modern medicine on illness narratives, and 6) the potential of non-pharmacological efforts for increasing in-the-moment meaning and quality of life for those most intimately affected.

Author

• Renee Lynn Beard, College of the Holy Cross