Reducing refusals of care through improved personal care interactions between caregivers and people with dementia: protocol for a realist synthesis

People with dementia develop progressive difficulties conducting basic activities of daily living, often requiring considerable assistance from caregivers. Many people with dementia, particularly in the advanced stages, can refuse assistance with care leading to difficult interactions. The ways in which refusals of care can be best reduced are unknown. Using a realist approach, this study aims to develop and refine evidence-based programme theories showing which mechanisms of interventions contribute to reducing refusals of care between caregivers and people with dementia, in which contexts, how and why.

The realist synthesis will be conducted in three iterative stages.Stage 1 will develop initial programme theories through secondary analysis of caregivers and persons with dementia interviews and observations, a preliminary exploratory literature review and team discussions. After initial programme theory development, the focus of the synthesis will be decided by the study team.Stage 2 will involve conducting focused, iterative and targeted literature searches to test and refine our initial programme theories considering the evidence for each setting: hospital, care home, home care and family. Data synthesis will use a realist lens to examine what works for whom in what circumstances and how, and organise related evidence to context-mechanism-outcome configurations whenever possible.Stage 3 will use stakeholder interviews to explore reactions to the programme theories and enhance validity after integration of these findings, recommendations and conclusions will be developed.

The NHS Social Care Research Ethics Committee has approved the interview stage of this study (REC reference: 24/IEC08/0007; IRAS project ID: 338274). Informed consent will be obtained from all interviewees prior to data collection. Findings will be disseminated via peer-reviewed publications, conference presentations and accessible information for key stakeholders.

CRD42024496072.