Responding to dementia A critical phenomenology of everyday life among community-dwelling people with dementia in the Netherlands

How do people go about their everyday lives when stories told about them prefigure their ultimate disownment? As images of an overpowering increase in the prevalence of dementia warn general publics about the syndrome’s incapacitating effects, little is known about what we could learn from the ways in which people living with a dementia diagnose give shape to their lives in a positive sense. This dissertation offers both a lifeworld perspective on the challenges facing people living with a dementia diagnose, and ideas about how others could join people with dementia in making life with it a more habitable place. In this ethnography Laura Vermeulen takes her readers along in every day moments drawn from her five-year spanning study with community dwelling people with dementia who lived alone in a big city in the Netherlands. Vermeulen highlights how underlying the practical challenges and social forms of exclusion people with dementia face, many of them grapple with the existential quest to keep life going as a fundamental responsive process. She advances her critical phenomenological approach as allowing researchers and the general public a new framework for understanding and working with dementia. This relational approach helps us to rework care and support practices into ones facilitating larger circles of family, friends, and acquaintances in grappling with the social and existential quests coming up in lives with dementia. Vermeulen argues that by joining people with a diagnosis in considering what ‘dementia’ resonates with in our lives, we may queer dominant notions of selfhood and understand attempts at living with dementia as pointing us the way in our fostering of fundamentally human abilities.