"That's how we do it...we treat them all the same": an exploration of the experiences of patients, lay carers and health and social care staff of the care received by older people with dementia in acute hospital settings.

Abstract

... we treat them all the same' This study aimed to explore the experiences of patients, lay carers and health and social care staff of care received by older people with dementia in the acute hospital setting. In view of the ageing population, an increasing prevalence of dementia and the emerging dignity agenda this is a particularly topical subject. Four elements are included in this thesis: a literature review, a research study, a practice development project and an integrative review. A literature review sets person-focused research in the context of dementia research as a whole. It also identifies ways in which studies have been conducted in an ethical and meaningful manner. An ethnographic approach was used in the research study to collect data through observation, conversations and interviews. Findings portray a bleak picture of the care of this vulnerable group. Patients demonstrated, through words and actions, how difficult they found the experience. Lack of communication was an issue as was the obvious distress caused by delivery of personal care. Lay carers were relatively uncritical although this may have been due, in part, to the recruitment process. Staff generally appeared to have good intention. Most stated that they had received little or no preparation or education in dementia care. Many staff functioned almost entirely within thebed and body'framework. They frequently avoided communication with patients. Staff worked in a deeply embedded habitus, in which they appeared not to really think about what they were doing. They demonstrated a lack of empathy with patients. The concept that staff were working in a 'switched off mode and lacked empathy called for a practice development project that engaged them on both cognitive and emotional levels. A practice development project based on the philosophies of confluent education and situated learning was implemented. Initial evaluation has demonstrated some tangible changes in practice. An integrative review draws these elements together into a coherent whole. Potential contributions to the body of knowledge are acknowledged, as are limitations of the work. This study has shown that people with dementia, even those at an advanced stage and with superimposed physical illness, can be engaged in research that is both ethical and meaningful. It has shown that improvements in practice are possible. They need to be underpinned by a belief in the personhood of staff as well as patients. Areas for further research and practice development in this vital subject have been identified.