Home or care? Capacity or incapacity? : an ethnographic study of how capacity and best interests are decided for people with dementia on discharge from hospital

Abstract

Whether people with dementia can make their own decisions regarding where they live on discharge from hospital is a complex but frequent and routine decision faced by multidisciplinary teams working in general hospitals. The decision has potential to impact significantly on the lives of people with dementia and their relatives. In England and Wales, decisions must be made within the legal framework of the Mental Capacity Act (2005) and are based on judgements as to whether the person with dementia has capacity to make this decision, or whether they lack capacity and a best‐interest decision must be made for them. There is little empirical evidence available about how these decisions are made in practice. The aim of this thesis is to explore and understand the interpretive work in which practitioners engage, to make sense of, and enact the MCA when making judgements on the capacity of people with dementia to make decisions about place of residence on discharge from hospital. Ethnographic methods were used to conduct this exploratory research in three hospital wards. The perspectives of people with dementia, their relatives and health and social care professionals were captured through observations, interviews and analysis of medical records. The data from 29 patient cases were analysed using constant comparative methods and grounded theory and interpreted using social science theory. The findings illustrate four aspects of the enactment of the MCA: interpretation of the Act and how this impacts on capacity assessment; key narratives influencing capacity judgements; complexities of managing binary notions of capacity; and the involvement of people with dementia in decision making in the context of best interests. Issues with the enactment of the MCA within the medical context are then reflected upon. The conclusions highlight the relevance and unique contribution of this work. Implications for practice are suggested, which may improve the outcomes of capacity assessment, bestinterest decisions and hospital discharge for people with dementia, their relatives and practitioners.