Understanding and improving the experience of care for people with dementia in hospital: Developing the dementia care pointers for service change

Abstract

AbstractBackgroundBeing in hospital can be particularly confusing and challenging not only for people living with dementia, but also for their carers and the staff that care for them.MethodWe undertook three systematic reviews of quantitative and qualitative evidence according to best practice guidelines. The reviews explored: 1) experience of care in hospital; 2) experience of interventions to improve care in hospital; and 3) effectiveness and cost ‐effectiveness of interventions to improve the experience of care in hospital for people living with dementia, their carers and staff. Links between the findings from the three reviews were explicitly identified through the creation of a conceptual map. The overarching messages and their implications were discussed with key stakeholders. An advisory group of dementia specialists, hospital staff, commissioners and family carers advised us throughout the project. PROSPERO registration CRD42018086013ResultOur reviews show that the experience of care in hospital for people living with dementia is a dynamic process, being impacted by a complex range of personal, institutional and environmental factors. Despite the intent to deliver person centred care, and armed with the knowledge of how important this is, person centred care is still not happening consistently within hospitals. The effect of this is not only a poorer experience of care for people living with dementia and their carers, but also has a detrimental effect on staff emotional well‐being as a result of not being able to give the care they strive to provide. We highlight 12 institutional and environment practices and processes (Pointers for Service Change) that warrant consideration for those aiming to improve the experience of care in hospital for people living with dementia, their carers and staff.ConclusionEvidence suggests that although people living with dementia can have a good experience of care in hospital, this is still not happening for many. When staff cannot provide the care they would like to give, this has a negative effect on people living with dementia, their carers and the staff themselves. Further research needs to identify how best to change ward cultures, and how to maintain these changes in the long‐term.