Keeping care fully alive - An ethnography of Moving-with carers and persons living with dementia

J Aging Stud. 2021 Jun;57:100927. doi: 10.1016/j.jaging.2021.100927. Epub 2021 Apr 8.

Abstract

Metaphors of persons living with dementia as living dead or zombies create images of soulless bodies, consuming the lives of those around them. Such metaphors also accentuate the public fear of dementia as one of the most threatening conditions that can befall persons or their loved ones. Drawing from an ethnography on the experience of carers and persons living with dementia, the sub-study described in this article focused on specific events within Moving-with-an eight sessions movement group designed to cultivate new experiences of self with others. At the end of the last session, a carer referred to her experience of Moving-with as "some good times." Her statement raised questions about what constituted those "good times" for that particular carer and how they came to be. Using a narrative-phenomenological approach that foregrounds the particularities of human interactions, we traced the course of a "good time," from its creation by all the participants in a Moving-with session to how it entered into the couple's everyday life outside the sessions. A microanalysis of those significant experiences illuminates how the improvisational actions of those involved made space for others to respond in ways not solely defined by their caregiving relationship. Dewey's philosophy on aesthetics further highlights the fully alive nature of such moments and underscores how the embodied and ethical nature of care arises in the tension between past and present. Care as an experience is, thus, never fixed. Attention to those moments contributes to the ways in which we can (re)define and enact care. In other words, tracing the creation of fully alive moments and their portrayal can contribute to keeping care, itself, fully alive.

Keywords: Care; Dementia; Ethnography; Fully alive; Moving-with; Significant experience.