The consequence of “doing nothing”: Family caregiving for Alzheimer's disease as non-action in the US

Abstract

This article adopts a discursive approach in order to examine how dominant US discourses shape both public and personal understandings of the caregiving work that families do, specifically in the context of Alzheimer's disease (AD). Family caregivers are an essential, increasingly recognized piece of the US health care system. Dominant discourses of AD and caregiving articulate family caregiving in contrast to biomedical intervention. The dichotomy privileges the ability to affect a biomedical outcome and, using that metric, minimizes caregiving's potential value as meaningful action. Family caregiving comes to be seen as what I term non-action, action that, while voluminous, is not perceived as meaningful in terms of its outcome. Drawing on over 26 months of ethnographic fieldwork in the Midwestern US with families living with early-onset AD (2011–2013), I focus on spousal caregivers to trace how these discourses shape the possibilities for family caregiving. I show how advocacy rhetoric is taken up and reproduced by family members, who learn to see their own caregiving labor through a biomedical lens. However, I also demonstrate that, obscured by dominant discourses, caregivers engage in relational labor, the continual work of making and unmaking social relations. Recognition of caregiving as part of longer-term relational endeavors, I argue, offers the potential to reframe caregiving discourses and reimagine the value the labor of caregiving as meaningful in its own right.