The experiences of people with dementia in the acute hospital ward setting

The accounts of people with dementia about their experiences are essential to provide care that is based on their preferences. Evidence is lacking for factors within the acute hospital setting that contribute to good and poor care experiences. This thesis aimed to explore what people with dementia consider to be important factors that contribute to their experience of being in hospital. A qualitative systematic review was conducted to assess the evidence for experiences of people with dementia in hospital. The findings revealed variation in experiences which were influenced by their physical and social environment. Most importantly, the review revealed that there are several factors within the care process that can influence both good and poor care. However, the review also highlighted that there was a lack of accounts from people with dementia on their experiences. A multi-perspective qualitative research study was conducted using interpretative phenomenological analysis to explore the experiences of people with dementia during hospital ward episodes. The analysis revealed several novel findings that contribute to the existing literature: people with dementia perceived that they should not be in hospital and that they were not involved in this decision-making process. Their experiences highlighted for them their sense of failing self and an uncertain future. They faced this uncertainty whilst living with grief of who they used to be, and for some, denial that dementia existed. Staff were mostly blameless in limitations of care and people with dementia appeared to influence responses from staff to evaluate their care as good. They defined poor care as being neglected and ignored and perceived that they had to, and would, respond in certain ways to ensure that this did not occur. The thesis has highlighted the importance of co-producing evidence to inform changing practice and designing research.