People with dementia develop high needs for assistance with their personal care and in the later stages can be reluctant to receive support with these daily tasks.
When people with late-stage dementia refuse assistance with personal care it leaves those caring for them in a difficult position. If care is not provided, the person with dementia could become neglected, have poor hygiene, or develop urine burns or infections. On the other hand, if care is provided, it could be against the person’s will. Refusals of care could be due to the person with dementia not understanding what the caregiver is trying to do, environmental factors, health status, or unmet needs. Refusals are common in people with dementia living in care homes and living at home.
The Pro-CARE study aims to learn more about refusals of care in late-stage dementia and use the findings to develop training and educational materials for caregivers to improve personal care interactions in dementia.
Key Research Questions
This project aimed to: determine the factors influencing refusals of care in care home and family settings; explore how family carers and care-home staff provide assistance with personal care to people in the later stages of dementia, including to those reluctant to receive or resisting care, and create training to add to informal and formal carer skills.
The first project had three stages:
- Stage 1: questionnaires to family carers and care-home staff, to find out about refusals and engagement in personal care at the later stages of dementia
- Stage 2: interviews, and observations (some video-recorded) of care tasks in family carer and care-home settings to learn from experiences of giving, and receiving, personal care in late-stage dementia
- Stage 3: workshops to develop training to aid carers in assisting with personal care.
Next Steps
Dr Backhouse is applying for funding to develop the Pro-CARE findings into a co-produced intervention and test the feasibility of this intervention.
Research Outputs
A brief summary of findings from the study can be found here: Pro-CARE study findings summary
A booklet of “Assisting People with Dementia with their Personal Care: Ideas and Tips for Carers” created from the study can be found here: Ideas and Tips for Carers
Publications from the Pro-CARE study can be found on these links:
- How do family carers and care-home staff manage refusals when assisting a person with advanced dementia with their personal care?
- Most Common Refusals of Personal Care in Advanced Dementia: Psychometric Properties of the Refusal of Care Informant Scale
- Strategies and interventions to reduce or manage refusals in personal care in dementia: A systematic review
- Understanding and reducing refusals of personal care in dementia
- What are the factors associated with people with advanced dementia refusing assistance with personal care?
The Research Team and Funding
The Chief Investigator of the team is Dr Tamara Backhouse, Alzheimer’s Society Research Fellow, working with: Professor Eneida Mioshi, Professor of Dementia Care; Dr Anne Killett, Associate Professor; and Dr Mizanur Khondoker, Associate Professor. The study is funded by the Alzheimer’s Society. Funding to build on from this work is being sought.