From ‘living death’ to ‘becoming-with’: caring for dementia beyond the human

Abstract

This essay provides a critical overview of historical and contemporary conceptualisations of selfhood in dementia. We explore the intersections of psychological and sociological research, as well as care practices, in dementia scholarship and how these have evolved in the years leading to and proceeding the start of the twenty-first century. Focusing on historical discourses of dementia and the metaphor of dementia as a ‘living death’, this essay maps the development of prominent conceptualisations of dementia in western cultures, from their roots in Cartesian philosophy to modernist values and existential anxieties. We firstly explore historical notions of selfhood in people living with dementia and the presumed erosion of the self that culminates in a so-called living death. Then, we discuss the radical shift in attitudes that arose around the start of the twenty-first century towards perseverance of selfhood in dementia and person-centred care. We finally consider whether our current understanding of selfhood in dementia could benefit from a posthuman approach, which requires a radical shift towards a more relational, multiple, and ultimately affirmative ways of caring for dementia.