La Maldición de Antioquia: Stigma, Illness Metaphors, and Caregiver Narratives of Early-Onset Alzheimer's Disease in Colombia

Abstract

This thesis explores the biological and humanistic aspects of early-onset familial Alzheimer’s Disease (EOFAD) in Antioquia, Colombia, where the world’s largest population of EOFAD patients’ lives. I first present a biological introduction of the disease and the genetic mutation, PSEN1 E280A, which causes EOFAD in this population. Next, I discuss several interviews of caregivers that I conducted throughout the Antioquia region, which provides insight into the EOFAD caregiver experience and gives a voice to a population that is often ignored or left unconsidered. In the third chapter, a new tool I designed for illness metaphor research and the results of its first use are described and analyzed, and this discussion helps elucidate the social stigma of EFOAD and the nuances of the illness within the context of Antioquia. Finally, an analysis of recent media coverage highlights how stigma is propagated through society and how illness metaphors vary between disease representations rendered by caregivers—people who work regularly with the disease—and those produced by media.