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Abstract

In 2015, an estimated 5.3 million people in the United States were living with Alzheimer’s disease (AD). For both those diagnosed and their families, the dominant narrative of what this life is like is a harrowing one: Alzheimer’s disease is a terminal condition that unremittingly eats away at people’s ability to connect with the world around them, slowly unraveling the core of who they are. There currently is no known cure, and existing pharmacological treatments have limited, short-term benefits. Family members—most often, spouses or children—become the primary caregivers, tending to the daily needs of those diagnosed with Alzheimer’s. Given the lack of possible medical intervention, they must focus their efforts on maintaining the comfort, dignity, and quality of life of those diagnosed. A political climate of scarce resources and a biomedical logic that privileges the eventuality of a cure, however, frame families’ efforts as burdensome stop-gap measures that do nothing to halt Alzheimer’s progression. In this paradoxical milieu, where caregiving is both seen as critical to national health care infrastructure and deeply devalued, families must provide care and continue the familial work of social reproduction. Through a study of couples living with early-onset Alzheimer’s disease in the Midwestern United States, this dissertation examines how families learn to live with Alzheimer’s, the ways they balance a caregiving relationship with existing family relations, and what the implications of doing so are for them as a family. Medical anthropologists and sociologists frame the process of learning to live with illness as one of increasing medicalization for those involved. Viewed in this way, life with Alzheimer’s is a process of becoming a “person with Alzheimer’s disease” and a “family caregiver,” a trajectory in which families are dissolved into this new relation—one often understood by scholars as primarily one of social control—as biomedical understanding comes to obscure all other relational possibilities. In contrast, I argue that families draw upon both biomedical and familial notions of AD and caregiving as they learn to live with Alzheimer’s. Even as they increasingly recognize themselves in terms of a caregiving relation, I demonstrate that family members remain concerned with endeavors of family-making. The familial work of social reproduction does not fade, but rather is a critical part of the caregiving relationship as families learn to live with AD. Families labor to maintain these endeavors in the midst of life with a condition understood to unravel the very abilities of relationality considered necessary to maintaining family. In my fieldwork, I found that they did so by learning to recognize AD, generally considered a condition of the brain, as a disease entity constituted in the social and material relations of family. Across the dissertation, I trace the ways that, by engaging in the work of kinship and family-making, family members are able to, even temporarily, act upon and rework Alzheimer’s disease. My research contributes to work in anthropology, sociology, and science studies by, first, retheorizing the relationship between the clinic and the family. I argue that medicalization is insufficient to conceptualize the processes of learning to live with AD. As much as families living with AD come to understand their family in medicalized terms of Alzheimer’s disease and caregiving, they also come to understand Alzheimer’s disease and caregiving in terms of family, not only their own family history, relations, and narratives, but also more dominant ideologies and understandings of family that circulate in US discourse. Through the practices and relations of everyday family life, I argue, families domesticate Alzheimer’s and caregiving. Alongside theories of medicalization, domestication illustrates that both Alzheimer’s disease and family caregiving are shot through with ideologies of family, its relations, routines, and practices, and the obligations it engenders. Further, it accounts for the fact that Alzheimer’s and caregiving enter people’s lives in media res, that people don’t adopt them wholly—no matter how encompassing them can seem—but instead incorporate them into the larger projects of their lives. By shifting the frame to one of domestication, I both unsettle the clinic’s dominance in shaping people’s understandings of health and illness in their own lives and dispel any clear boundary between the biomedical and the domestic. Second, by conceptualizing family caregiving as a sociohistorical formation of knowledge, practices, relations, and morality, I offer conceptual clarity within theorizations of care. In contrast to the less culturally and historically situated “care,” I argue that family caregiving is a phenomenon unique to the late 20th/early 21st century US, situating caregiving as the product of a particular time and place, rather than a naturalized enactment of ahistorical family obligation. In doing so, I foreground the explicit nature of the way family care labor is drawn upon within the health care system, tracing how political economic concerns about care and aging filter into the daily lives of families, transforming them. In addition, I highlight the relationality of the processes I examine through a focus on family caregiving, drawing attention to the way that all parties are subjected to the discourses and moral frameworks of family caregiving. Too often, given the perceived vulnerable nature of dependency, care is articulated as a practice or relation of dichotomous domination, wherein one person or group exerts controls over another person or group. However, the relations of caregiving I examined were much richer than a narrative of social control could encompass. The body of the dissertation comprises six chapters, loosely structured into the three sections. The first section, chapters one and two, illustrates how families come to see Alzheimer’s disease in the midst of their daily lives. In chapter one, I focus on the diagnostic process within the clinic. I argue that, despite a great deal of concern over locating Alzheimer’s disease as a pathological process within the brain, the condition is seen most clearly within the daily lives of those diagnosed. Families are calibrated as a type of diagnostic technology to observe and report upon the moments of everyday life when Alzheimer’s becomes visible. As they do so, they come to see AD within the social and material relations of family. The diagnostic process is one of locating Alzheimer’s within a person’s home and community, and the second chapter examines what “comes home” with the diagnosis, namely conceptualizations of Alzheimer’s disease and family caregiving that come to shape how families understand their lives. I trace the entangled emergence of AD and family caregiving through the entrenched narrative of Alzheimer’s activism, the dominant symptom of memory, the understanding of both AD and caregiving through activity, the powerful temporality of decline, and the structuring logic of a coming cure. As families learn to see Alzheimer’s and family caregiving through these lenses, their relations are altered. Chapters three and four compose the second section, detailing how families are affected by the dominant conceptualizations outlined in the previous chapter. In chapter three, I argue that the biomedical privileging of only action directed toward the search for a cure as meaningful and legitimate renders the work that families do as non-action. In contrast to inaction, or passivity, non-action can involve a great deal of action, but action without meaning. The everyday labor of both those diagnosed and family caregivers—to maintain themselves and each other—is obscured, a devaluation that families come to adopt. Chapter four shifts the focus from the possibility of action within the logic of a coming cure to the disconnect between its hype-filled temporality and the temporality of inexorable decline. Focusing on families’ perceptions of clinical research, it offers a potent ethnography of the disjuncture between biomedical agendas and the lived realities of families, tracing the ways that the construction of hope on a national scale of research and activism can attenuate hope on another, smaller scale—that of families. The final section, chapters five and six, examine how families, even as they employ the dominant biomedical conceptualizations of Alzheimer’s and family caregiving, also draw upon familial relations, practices, and spaces to make sense of their lives and to continue their endeavors of family-making. In chapter five, I examine how family caregivers find flexibility within their understandings of kin relations in order to maintain relationships commensurate with caregiving and family. Whether coming to think of their spouse as a child or of the roles of their spousal relationship as flipped, I demonstrate that family caregivers employ a range of understanding of roles, activities, and intimacies to continue to conceptualize the diagnosed person as family. In doing so, in contrast to notions of infantilization, I argue that families’ use of alternative kin understandings can be a means of maintaining family and personhood, rather than doing violence to them. Chapter six broaden the frame to include material relations, namely the relations between family and home. I argue that as a family comes to see Alzheimer’s disease within their home, the home becomes a site for intervention, where action can be taken to stave off the effects of Alzheimer’s. Yet, as changes are made to the home, Alzheimer’s becomes increasingly visible, threatening the stability of the family. Ultimately, I illustrate, families work to disentangle the social relations of family from the material ones, recasting family across new spaces beyond the home.

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