Title: Improving care for people with dementia in acute hospitals: development and feasibility study of rules- of -thumb to promote comfort and decrease distress (DeCoDe-H)
Funder: Department of Health and Social Care

Abstract: BACKGROUND Up to 42% of acute hospital inpatients have dementia. Being unable to communicate their discomfort and needs may lead to distress and agitation. Maintaining comfort is a neglected aspect of care. Heuristics (&ldquo;rules-of-thumb&rdquo;) provide a simple intervention to maximise comfort and reduce distress and pain. AIM To develop and test the feasibility of a simple, acceptable and practical intervention to support acute hospital staff identify discomfort and distress and maximise comfort and wellbeing in people with moderate and severe dementia. Work Package (WP) 1: CAUSES, IMPACT AND MANAGEMENT OF DISCOMFORT (months 0-8) Observational study in medical wards from three diverse acute hospitals. Participants (150; 50 from each site) will have moderate and severe dementia. Consent procedures follow the Mental Capacity Act (2005). Study measures include environmental assessment- the Therapeutic Environment Screening Scale for Nursing Homes & Residential Care (TESS-NH/RC), light, temperature and noise. Participants will be observed using the Sources of Discomfort Scale (SODS), Symptom Management-End Of Life in Dementia (SMEOLD, physical symptoms), Pain Assessment In Advanced Dementia scale (PAINAD), Neuropsychiatric Inventory (NPI) and Dementia Care Mapping to assess wellbeing. We will document socio-demographics, medical history and medication and conduct semi-structured interviews with staff and family carers/relatives on factors enhancing or detracting from comfort. Prevalence of sources of discomfort, pain, and neuropsychiatric symptoms will be described. Associations between discomfort and behaviours that challenge will be explored (chi-square tests). Qualitative interviews will be analysed thematically. WP 2: DEVELOPMENT OF HEURISTIC INTERVENTION (months 5-13) Two mixed co-design groups, meeting on three occasions (current and former family carers, people with mild dementia, practitioners caring for people with dementia in acute hospitals- total 30 participants), purposively sampled to maximise diversity, will use a nominal group process to iteratively develop and refine heuristics informed by WP 1 data. People with dementia from the Dementia Engagement and Empowerment Project will meet twice to inform development. Educational package design occurs in parallel and two focus groups will be held with staff. WP 3: FEASIBILITY STUDY (months 12-20) A non-randomised &ldquo;before and after&rdquo; feasibility study in three acute hospital wards. Two champions at each site will provide change leadership using the educational package. Each site will use the heuristics with people with dementia for 6 months. Sites will be visited prior to implementation and monthly for support and informal feedback. Staff will complete the Sense of Competency in Dementia Care Scale prior to implementation, 1 and 5 months later. Data collection and outcomes Staff at each site will identify 15 people with dementia with whom they will use the heuristics. We will gain consent or consultee agreement, collecting data prior to use of the heuristics and 2-7 days later (SODS, SMEOLD, PAINAD, NPI). We will conduct semi-structured interviews at 17 months to understand how the heuristics are working using rapid thematic analysis to present themes to co-design groups and amend heuristics where necessary. We will report recruitment rates, completeness of outcome data collection, estimate intervention costs and feasibility of individual outcome cost data, conduct a process evaluation including number of training sessions and intervention fidelity. Using predefined &quot;stop-go&quot; criteria will indicate whether a larger pilot trial is warranted. BENEFITS TO PATIENTS AND THE NHS We will develop an in-depth understanding of sources of discomfort, staff interactions and how comfort is currently maintained. This will inform the heuristic toolkit, staff education package to maximise comfort in people with dementia in hospital and a future pilot trial. This may reduce distress in patients families and staff, reduce length of stay, adverse events and decrease care costs.

Lay abstract: Aim: We want to improve comfort and decrease distress among people with dementia who are patients in acute hospitals, particularly those who may not be able to communicate their needs to staff. Background: A quarter of people with dementia stay in hospital in a year. Some find it hard to communicate their needs to hospital staff and this may cause distress. Maintaining comfort (physical and psychological) is a key but neglected aspect of good care. Design and methods: We will develop a simple rules-of-thumb (heuristic) intervention which can be used by different hospital staff. There are three main parts of our proposed study. 1: We will collect information about patients with dementia in acute hospital wards and will identify the most common sources of discomfort and distress and how these are best managed. 2: We will use this information to co-design a practical toolkit for staff to use to improve patient comfort. Co-design uses knowledge and experience from carers, staff and specialists. Focus groups and interviews will involve people with dementia, hospital staff and family carers. 3: We will test our intervention toolkit on 3 acute hospital wards. This will help us work out how effective it is in real-life situations, if it is feasible to use in practice and whether we should progress to a full clinical trial. Patient and public involvement: Our expert by experience co-applicant helped develop this proposal. A core group of family carers from different backgrounds and places will be members of our project management group, involved with project design, analysis and dissemination. Dissemination: will be in journals/dementia care press/social media and at conferences. To ensure we reach frontline practitioners we will work with NHS Trust dementia leads, Health Education England, Skills for Health, Royal College of Nursing and practice development organisations.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL