Understanding Personal Care Interactions in Severe Dementia


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 finding to develop training and educational materials for caregivers to improve personal care interactions in dementia.

Key Research Questions

This project aims 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; create training to add to informal and formal carer skills.

Research and Outputs Research

The project has 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.

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, Senior Lecturer; and Dr Mizanur Khondoker, Senior Lecturer. The study is funded by the Alzheimer’s Society