P02 Improving the experience of care for people with dementia in hospital: developing the DEMENTIA CARE pointers for service change

Abstract

Background Being 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. Methods We 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. Working closely with key stakeholders we co-developed 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. An advisory group of dementia specialists, hospital staff, commissioners and family carers advised us throughout the project. PROSPERO registration CRD42018086013. Results Our reviews show that the experience of care in hospital for people living with dementia is a dynamic process, being impacted at any one time by a complex range of personal, institutional and environmental factors. Despite the intent to deliver person centered care, and armed with the knowledge of how important this is particularly for people living with dementia, this is still not happening consistently across hospital care. 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. Working closely with evidence end-users enabled us to transform these findings into easily-accessible, practical suggestions to improve the experience of care: Dementia Understanding, Education and Training, Modelling Person Centred Care, Environment, Not Alone, Time, Information Sharing, Access to Resources, Communication, Ask Family, Raise the Profile and Engage Volunteers. Conclusion Evidence 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. Future research should identify how best to change ward cultures, and how to maintain these changes in the long-term.