Before, Behind and Beyond: Life Stories and Identity in Dementia Care

ABSTRACT

Life stories are widely promoted in person‐centred dementia care as tools to preserve the identity of the ‘person behind the dementia’. However, as cognitive decline progresses, staff often face dilemmas when current expressions of preference appear to contradict a person's documented past, for example, a devout Muslim requesting pork or a lifelong teetotaller showing interest in alcohol. The aim of this study is to explore how dementia care staff reason about situations in which life story information conflicts with a person’s present identity and expressed preferences. Using Atchley's continuity theory (1989), we explore how staff conceptualise the relationship between external continuity (roles, habits and life patterns) and internal continuity (self‐perception and identity). Based on six focus group interviews with dementia care staff in Sweden, we demonstrate that the frequently cited dichotomy between ‘seeing the person’ and ‘seeing the condition’ is overly simplistic; instead, staff adopt flexible and dynamic understandings of identity that accommodate change over time. Our findings suggest the need to move beyond binary framings and indicate that thinking in terms of the person before, behind and beyond dementia offers a more nuanced framework for understanding identity in dementia care.