Sawyer, Joseph Michael; (2024) Forming a kinship with loss: Navigating form and non-form in the narratives and practices of care at the end-of-life for people affected by dementia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

This thesis provides an empirically based reflexive account of the social space occupied by people with dementia facing the end-of-life. It addresses how knowledge in the field is constructed to create visions of success, meaning and value that become established as orientating ideals. Quantitative and qualitative data was collected between October 2021 to March 2023. Social network analysis was used to contextualise informal caregiving across nine different networks of care. This was followed by interviews and long-term participant observation with five people with dementia, their friends, family and carers. From this data, it was clear that what is commonly perceived as absence was crucial in the responses given. This absence constituted a space where dementia distorted cognitive and social norms, creating a world beyond what is empirically recognisable. Working with research participants it was possible to create an embodied representation of absence which recognised the suffering as well as the healing that results from engaging with end-of-life care in advancing dementia. The thesis focusses on a dialectic between experience and theory which challenges notions of progress that become paradoxical at the frontiers of human existence. Throughout the study I describe a shift in focus from the production of a programme theory that would determine what works, towards an analysis that focussed on the emergence of two worlds, which I have described as ‘form’ and ‘non-form’. The ethnography describes these worlds, offering a reflexive account of the possibilities in working with and within them. In doing so, I argue that progress, meaning and value are not ends in themselves but exist as ephemeral yet transformative moments that arise through a deep articulation of our greatest vulnerabilities. The PhD proposes that recalibrating the narratives and practices of care to accommodate all that is non-form is critical to how the end-of-life is experienced.

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