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To identify strategies and mechanisms of interventions between caregivers and people with dementia that contribute to reducing refusals of care and determine how they work, in which contexts, why and for whom.
Realist synthesis.
There were three stages: (1) initial programme theory development and prioritisation through assessing video-recorded personal care interactions and interview transcripts; scoping the literature and team discussions, (2) literature search, review and synthesis and (3) realist interviews with stakeholders and refinement of evidence-based programme theories.
Searches were conducted in MEDLINE, EMBASE, PsycINFO, CINAHL Ultimate, Cochrane CENTRAL Register of Controlled Trials and Web of Science; date range: 2000–2024.
A total of 71 sources were included in the synthesis, and interviews with 15 stakeholders. Eight programme theories were generated, evidenced and refined, each incorporating multiple caregiver strategies. The overarching mechanism which made people with dementia more likely to accept assistance with personal care was trusting the caregiver and feeling safe. Seven mechanisms fed into this: a sense of control, positive connection, care feeling manageable, working together, engaging with the care activity (or something non-care related), comfort and needs being known and addressed.
Refusals of care from people with dementia can be reduced by multiple caregiver strategies related to communication, approach, the type of care offered and the care interaction process. Mechanisms reflect relational aspects: the quality of the caregiver/person partnership and making the person with dementia feel safe.
Our findings provide programme theories and practical care strategies which could be helpful for those, such as nurses, working to improve personal care practices for people with dementia.
Public representatives advised the study throughout, providing advice on initial programme theories, evidence-based programme theories and synthesised stakeholder evidence.
This synthesis uses the publication standards for realist synthesis (RAMESES 1).
PROSPERO: 2024 CRD42024496072
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