Forget Me Not: What Gets Lost in Translation in the Alzheimer’s industrial Complex

• In Event: 3422 - Section on Aging and Life Course Refereed Roundtable Session
  In Refereed Roundtable 100min: Table 05. Healthcare

Abstract

Narrating the potential for agency, resilience and identity construction in Alzheimer's experiences

Despite the ever-increasing incidence rates and corresponding attention within the social and behavioral sciences, an Alzheimer's diagnosis remains socially constructed as a "death sentence" by clinicians, policymakers and unaffected seniors alike. Indeed, the relative paucity of discourse regarding living with the condition reveals the underlying assumption that people with AD cannot in fact “narrate” their own experiences. Drawing on mixed method qualitative datasets from individual, dyad and group in-depth interviews, however, my findings repeatedly demonstrate the power of narrative data to “give voice” to individuals experiencing challenges communicating in normative ways. Using grounded theory methods to collect, code and analyze study data, common themes are revealed across the disparate stories collected. The overarching themes discovered include negative psychosocial aspects but also keen examples of agency, resilience and identity construction. In many ways, some of the most challenging aspects of living with AD involve the interactional tensions with social others, rather than the management of the so-called biological manifestations of the ailment. Given the powerful messages portrayed in these data, I argue that my findings serve as a type of “counter narrative” that has both psychosocial as well as social justice benefits. The potential of the “narrative turn” within healthcare, and especially the sociology of health and illness, to challenge pejorative framings of AD and the medicalization of the condition itself are an important and much-needed departure from the dominant biomedical reductionism that create additional struggles for individuals experiencing health and illness in a modern western context. The major challenges with and tensions in my narrative data on living with AD, however, involve methodological concerns about collecting such data longitudinally as the condition presumably worsens over time.

Author

• Renee Lynn Beard, College of the Holy Cross