Using a realist approach, this study aimed to develop and refine evidenced theories about how refusals of care from people with dementia can be reduced. The synthesis had three stages:
1) initial programme theory development and prioritisation,
2) literature search, review, and synthesis,
3) refinement of programme theories and evidence-informed framework
Background
People with dementia develop difficulties conducting daily activities such as washing, dressing and going to the toilet. Often, they require assistance from caregivers to manage these activities. Sometimes people with dementia can refuse assistance with care, which can lead to difficult care interactions. The best ways to reduce refusals of care are unknown.
Project Aims
This study aimed to identify 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.
We:
- Identified how interventions to reduce refusals of personal care for people with dementia are thought to achieve better care interactions.
- Developed a programme theory describing contexts and causal mechanisms of programmes/programme features where caregivers can improve personal care interactions for people with dementia, which result in positive outcomes.
- Identified and evidence what works, for whom, in what circumstances, and how.
Project Activity
We conducted a secondary analysis of data from the Alzheimer's Society Pro-CARE study and used key literature and team expertise to develop initial programme theories. We conducted a series of targeted literature reviews and synthesised relevant evidence. We then conducted stakeholder interviews to test and refine our theories. Public involvement representatives advised throughout.
Output
We published our programme theory and a framework of theory-driven understanding.
Impacts
The findings from this study have underpinned the development of a training intervention for care home staff to reduce refusals of care in the study AMM56 OPTIMISED DEMCARE. This intervention is currently being assessed for acceptability and will be further tested in a feasibility trial.
Who was involved?
- PI: Tamara Backhouse, UEA
- Eneida Mioshi, UEA
- Anne Killett, UEA
- Reed Bratches, University of Alabama at Birmingham, USA
