The shadow of dementia: Listening to undecidability in ethnographic interviews with persons suspecting possible dementia

Abstract

Even before a diagnosis of dementia, people may negotiate in their everyday lives the fears and suspicions about the possibility of a future with dementia. My field of research involves JewishIsraeli older adult individuals who suspect that they are beginning to lose their memory, but before seeking out a formal diagnosis—and when not seeking a diagnosis at all is an equal possibility. By distinguishing their experience of suspecting possible dementia from this of living with dementia, I attempt to illuminate the social, bio-diagnostic and cultural shadows of dementia hovering in the background of their everyday experience. I begin by shedding light on the ethical and methodological context of my specific field in Israel. I next reflect upon the concept of “shadow,” that is constituted within and reflecting the assemblages of lurking presences accompanying my interlocutors' daily negotiations of the possibility of dementia. I then situate their lived experiences, as well as my ethnographic engagement with them, in the context of the prevailing cultural and social moralities surrounding this possibility. Finally, I show how a negotiation of the place that this shadow occupies in their lives arises in the encounter with the ethnographer. This first account of people before diagnosis and not through the diagnostic event, while keeping the space for deciding about a possible future of diagnosis open, can contribute to the understanding of undecidability as an ethical stance in ethnography, incorporating the suspension of the need to order realities through the imperatives of a diagnosis of dementia. Further, understanding these mundane negotiations with these shadows can help us allow more space for uncertainty and unpredictability as legitimate forms of living with dementia.