Understanding informal carers’ decision-making in choosing a care home for a person with dementia in hospital.

This paper describes findings from a recently completed two-phase study undertaken in the UK by a multi-disciplinary research team. The first phase of the study consisted of an on-ward semi-structured interview with the person with dementia (PWD) if they were assessed as able to respond, and with a family member self-identified as involved in their care at that stage. 111 pairs of PWD/carers were recruited from patients referred to a specialist psychiatric liaison service in two general hospitals in England. Data was also obtained about quality of life (QoL-AD and EQ5-D0), severity of dementia (MMSE), carer stress (GHQ), activities of daily living (I-ADL) physical illness and depressive symptoms (GDS), and economic data on care services and resources. Where possible these measures were repeated at six months and at twelve months after baseline. In the second phase of the study we identified a sub-set of 15 PWD due to move into a care home on discharge. With their carers they participated in an in-depth qualitative study of their experiences pre, during and post hospital admission and the transition to care home living. This paper presents themes identified in the second phase of the study, incorporating relevant data from the first phase. Family carers described how they came to the conclusion that discharge to a care home was in the best interests of all parties. The paper explores their feelings of guilt, remorse and responsibility for the PWD and their hopes about the Home’s capacity for improving the QoL of the PWD. It presents their criteria for choosing a care home and the extent to which expectations were met. Their reflections following admission to the care home are also discussed