Analytic autoethnography of familial and institutional social identity construction of My Dad with Alzheimer's: In the emergency room with Erving Goffman and Oliver Sacks

This paper analyzes variable social identity construction for my Dad over his last two years, within his family, and then within several institutions, before he died of Alzheimer's Disease (AD). This article makes epistemic and methodological contributions to research on persons with AD by using analytic autoethnography and long-term ethnographic case development to trace processes by which my Dad's evolving social identity was constructed -- and increasingly socially constructed -- as his memory became more impaired and he moved from home into several institutions. It analyzes how our family resisted his conversion into an “AD patient” – the stigmatized sum of his symptoms – but engaged in what felt like Goffmanian betrayals to care for him. The paper recognizes the value and need to fight the image of AD as social death in research, the medical system, and popular understanding, but proposes a family Memory-Relationship self to conceptually capture the trauma many families feel as AD increasingly impairs the loved one with AD and leads to their death (unless they die of something else first). My Dad's placement in five institutions in six months created awful natural experiment-like leverage, because he was alternatively constructed in institutions as a legally competent adult, a dangerous patient, and an AD patient, and often responded correspondingly.