‘I have, so to speak, lost myself’: an interdisciplinary thesis on challenging notions of loss of self in dementia

This mixed-methods thesis explores the psychological experience of the self in dementia, with an aim to interrogate, reshape and re-conceptualise traditional notions of the cognition-mediated self, which have often resulted in narratives of loss. Challenging the notion of loss of self in dementia, this interdisciplinary thesis engages with philosophy, developmental psychology and sociology discourse to emphasize the embodied and relational nature of subjectivity. Theoretically, this PhD is grounded in the notion that the self is irrevocably embodied, situated and embedded, departing from exclusively biomedical or socially-constructed understandings of selfhood to provide a more affirmative understanding of the self in dementia. Through independent scholarly works, the thesis explores: -What are (some of) the origins of the notions that dementia equates with a total loss of self? -What is the empirical evidence-base to challenge such notions, while recognising the role of methodological innovation? -Beyond cognitive decline, how can interdisciplinary knowledge exchange foster novel conceptual and methodological insights into self-experience in dementia? Part 1 explores key theoretical groundings around ideals of the cognition-mediated self, notably the seminal Cartesian dualism and modernist values, while also considering alternative conceptualisations of embodied and relational subjectivity in the context of dementia (Chapters 1 & 2). Part 2 presents empirical insights from the field of psychology, including a scoping review of existing evidence-base exploring self-processing in dementia (Chapter 3), considerations of methodological innovation in providing sensitive measurements of pre-reflective manifestations of the self (Chapters 4 & 5), and an original quantitative study using methodologies inspired by developmental psychology (Chapter 6). Part 3 focuses on relational art-making to facilitate creativity, sensory involvement and non-verbal expressions for people living with dementia (Chapters 7 & 8). Insights across disciplinary fields, conceptual approaches and methodologies are knitted together to argue for an affirmatively relational future for dementia research and care.