Listening to Early Alzheimer's Disease (LEAD): Experiences over Time


LAC Burkhardt


Sociology and Anthropology


For residence at the Gerontology Institute at the University of Massachusetts, Boston during academic year 2017-2018


Perhaps the most dreaded disease of our time, Alzheimer’s is framed as a steadfast “loss of self” for those diagnosed, a long goodbye, and torture for all involved. The common tribulations of chronic illness dramatized as accounts of resilience and connection in spite of dementia are marginalized rather than celebrated. This longitudinal interpretive study draws on stories from those most intimately affected – diagnosed individuals and their care partners - to explore experiences of memory loss. Drawing on in-depth qualitative interviews and observations with multiple stakeholders, the project depicts various models of living with Alzheimer’s. Investigating how people interpret diagnoses according to shared worldviews has vast implications for understanding our core humanity as well as context-specific care needs. Mapping the social determinants of forgetfulness may reveal and hopefully begin to reverse potential barriers to accurate understandings of the illness, thus preserving a path to meaningful aging when facing Alzheimer’s.