Dementia At The Threshold: A qualitative Investigation Of Negotiating Threshold Spaces With Dementia

Abstract

This thesis argues for a profound shift in the way in which we understand dementia, advocating from a move away from the rhetoric of loss and decay, and towards an acknowledgement of people with dementia as whole and undiminished by the progress of their disease. It highlights the role of the narratives of decay in oppressing and disabling people with dementia, and contends that it the meaning attributed to dementia, rather than the dementia itself, which limits both what people with dementia can do and who they can be. This research uses an ethnographic approach to explores key areas where the physical, social and temporal spaces controlled by people with dementia meet those controlled by others, and elucidates the complex relationality of these threshold spaces. Through drawing on 78 hours of audio interviews with 11 people living with dementia in Scotland, this research highlights key physical, social, and temporal thresholds that participants encountered as part of their day-to-day lives. This thesis highlights the weaknesses in approaches that construct people with dementia as passive victims of biological tragedy. It offers instead a theoretical perspective that is rooted, in the understanding that a person cannot be ‘unmade’ by cognitive impairment. This perspective is grounded in Heideggerian philosophy, and allows for a deeper exploration of how people with dementia experience the physical, social, and temporal world as undiminished Dasein living with cognitive impairment. These experiences are contextualised through the lens provided by Thomas’ social relational approach to disability, which emphasises the role of society in disabling and oppressing people with dementia. These findings emphasise the need for a profound shift in both how dementia is represented as a reductive and tragic process and the ways in which barriers to social inclusion are constructed as the result of medical rather than social processes.