Dementia and risk: contested territories of everyday life

Aims. The project aimed to understand the construction of risk in dementia care from the perspective of the person with dementia, family carers and practitioners with the intention of developing negotiated partnerships in risk management. Background. This paper addresses a gap in the literature by embedding constructions of risk within everyday events and social contexts, and communicates such constructions through the voices of people with dementia, carers and practitioners. Method. This symbolic interactionalist study involved data collection by interview with 55 people with dementia (sometimes twice), and their nominated carer and practitioner. The sample was drawn from three regions of the United Kingdom. Data were collected during 2004. Conclusions. Five 'contested territories' of everyday living with dementia are outlined in this paper: friendships, smoking, going out, domestic arrangements, and occupation and activity. These contested territories are purposeful and allow for sense making, maintenance of self, claiming and relinquishing decision making, and creating purpose(lessness) in people's lives. Relevance to clinical practice. Assessing and managing risk in a way that respects the dynamics and purposes of contested territories will support care that is person centred, and moreover respectful of the relationships that contribute to maintaining the individual's sense of self and purpose.