title: 'Deferred or chickened out?' Decision making among male carers of people with dementia.
abstract: In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions. Arguably unsurprisingly, we found that short-term or 'day-to-day' decisions were made with input from those cared for, while longer term decisions were deferred until a point when necessity meant carers had to make decisions themselves. However, and importantly, carers were aware of the implications of how they were making decision, including the potential impact in terms of partial withdrawal, or even full denial, of autonomy of those they care for. Consequently, we argue that carers adopt a form of practised autonomy to negotiate the complexity of everyday decision making while managing longer term uncertainty and anxiety.
authors.affiliation: Salford Institute for Dementia, University of Salford, Salford, UK m.s.sampson@edu.salford.ac.uk.
authors.forename: Michelle S
authors.initials: MS
authors.lastname: Sampson
authors.affiliation: Salford Institute for Dementia, University of Salford, Salford, UK.
authors.forename: Andrew
authors.initials: A
authors.lastname: Clark
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D003704:Dementia; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D026684:Personal Autonomy
keywords: autonomy; compassion; decision making; dementia care; male carers; power; uncertainty