Title: Improving the experience of care for people with dementia in hospital: Systematic review of qualitative and quantitative evidence
Funder: Department of Health and Social Care

Abstract: Aim: To use existing evidence to direct change and improvements in the experience of care for people with dementia in hospital, their families and the staff that care for them. Methods: We will conduct 3 systematic reviews, develop a logic model and convene a series of UK regional consensus meetings to discuss findings in the context of existing services resulting in the co-production of plans for service change. Research questions: 1. What is the experience of people with dementia and their families of receiving care in a hospital setting? 2. What is the experience of hospital staff of caring for people with dementia? 3. What evidence is available to inform on the most effective and cost-effective ways to improve the experience of care for people with dementia in hospital? 4. What is the impact of such interventions on the health and wellbeing of the hospital staff and the families and informal carers of those with dementia? 5. Which factors are important in the successful delivery of approaches to improve the experience of care? PREPARATION: Consultation with the PAG to further develop and finalise the protocol before registration with the International Register of Systematic Reviews (PROSPERO). REVIEW: The search strategy will be developed by an Information Specialist (MR) in consultation with the PAG. Sources will include electronic databases and supplementary methods to identify grey literature. Inclusion and exclusion criteria will be applied to the title and abstract of each identified citation independently by 2 reviewers with disagreements being settled by discussion with a third. Population: People with dementia receiving care in a hospital setting, their families & the staff providing care; Intervention(s): Experience of care / interventions to improve experience of care; Comparator: Any; Outcomes: Any outcomes relating to the experience of care as reported by people with dementia, their families & hospital staff providing the care; Setting: Any hospital setting, including the process of transition into and out of hospital; Study design, publication date, language of publication: No restriction. Full texts will be obtained for papers that appear to meet the criteria and a similar process used. Standardised, piloted data extraction forms will be used to collect relevant data from each included paper. Appropriate quality appraisal checklists will be used according to study design. Quality appraisal and data extraction will be performed by one reviewer and checked by a second with disagreements settled through discussion with a third. Synthesis methods will be determined in response to the nature of the findings. INTEGRATION: We will bring together the findings from the three reviews through the development of a logic model. The logic model will be built column by column to map out the conjectured links between different types of intervention and anticipated outcomes, gaps in the evidence and factors that help or hinder intervention success. We will use face-to-face meetings, telephone conferences and email to ensure that the PAG are involved at all stages in contributing to the interpretation of the findings and the development of the logic model. CONSULTATION/PRE-IMPLEMENTATION: We will convene UK regional consensus meetings with providers, commissioners and recipients of services to discuss the findings in the context of existing services and co-produce plans for service change

Lay abstract: Aim: To understand how to improve the experience of care for people with dementia in hospital, their families and the staff that care for them. Methods: We will conduct 3 systematic reviews, bring together the findings and convene a series of regional consensus meetings to discuss findings in the context of existing services and co-produce plans for service change. Research questions: 1. What is the experience of people with dementia and their families of receiving care in a hospital setting? 2. What is the experience of hospital staff of caring for people with dementia? 3. What evidence is available to help us decide which are the most effective and cost-effective ways to improve the experience of care for people with dementia in hospital? 4. What is the impact of such interventions on the health and wellbeing of the hospital staff and the families and informal carers of those with dementia? 5. Which factors are important in the successful deliver of approaches to improve the experience of care? PREPARATION: We will talk to people with dementia and their families, health care professionals and commissioners to make sure that our research questions capture the essence of what is important to all those for whom the research is relevant. REVIEW: We will conduct 3 linked systematic reviews. A systematic review is a way of reviewing current practice by bringing together all existing published information on a topic and summarising it. The 'systematic' element means that the work will a) include everything published on a topic not just those things that individuals think are important, b) involve assessing the quality of the evidence found, and c) is conducted in a way (which is carefully documented) that would allow someone else to carry out the same procedure and produce the same findings. Our reviews will try and find out which ways of improving the experience of care for people admitted to hospitals with acute healthcare needs work best and which provide the best value for money. We will also look at factors that may help or hinder the successful delivery of these methods of providing care and how the approaches impact on people with dementia, their families and the health care professionals that provide care. INTEGRATION: The findings from the 3 reviews will be brought together alongside people with dementia and their families, health care professionals and commissioners. This approach will allow us to consider the pathway between methods of improving the experience of care and their intended outcomes. CONSULTATION/PRE-IMPLEMENTATION: We will work closely with our advisory group to develop and deliver a dissemination strategy that is appropriate to the findings and for different target audiences. At the heart of the strategy will be a series of UK regional consensus meetings with providers, commissioners and recipients of services to discuss the findings in the context of existing services. The aim of these meetings will be to co-produce plans for service change. Expected Outcomes: i) Identification of effective ways to improve the experience of being in hospital for people with dementia, their families and those that care for them, ii) improvements in the understanding of how to communicate and put these methods into action, iii) identification of approaches that could be further developed, and iv) identification of the important factors for consideration in designing and evaluating future approaches.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL