Project AMM48

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

Using a realist approach, this study aims to develop and refine evidenced theories about how refusals of care from people with dementia can be reduced. The synthesis has three stages:

1) initial programme theory development and prioritisation,

2) literature search, review, and synthesis,

3) refinement of programme theories and evidence-informed framework


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. As yet, the best ways to reduce refusals of care are unknown.

Project Aims

This study aims 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 will:

  • Identify how interventions to reduce refusals of personal care for people with dementia are thought to achieve better care interactions.
  • Develop 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.
  • Identify and evidence what works, for whom, in what circumstances, and how.

Project Activity

We will conduct a secondary analysis of data from the Alzheimer's Society Pro-CARE study, draw on key literature and team expertise to develop initial programme the3ories. We will conduct a series of targeted literature reviews and synthesise relevant evidence. We will then conduct stakeholder interviews to test and refine our theories.

Anticipated Output

We will publish our programme theory and a framework of theory-driven understanding and use it to underpin the development of an intervention to reduce refusals of care.


Backhouse T, Jeon Y-H, Killett A, Mioshi E. How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care? Dementia. 2022;21(8):2458-2475. doi:10.1177/14713012221123578

Who is involved?

  • PI: Tamara Backhouse, UEA
  • Eneida Mioshi, UEA
  • Anne Killett, UEA
  • Reed Bratches, University of Alabama at Birmingham, USA