Understanding personal care in dementia – interview study.
Research type
Research Study
Full title
Reducing refusals of care in personal care interactions between caregivers and people with dementia: Interview study.
IRAS ID
338274
Contact name
Tamara Backhouse
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
1 years, 0 months, 21 days
Research summary
Summary of Research
This interview study is the final part of a realist synthesis that aims 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.
Evidenced programme theories will be developed from preliminary theorising, literature searches and synthesis. Subsequently, for this interview study, we will present our theories to stakeholders to test and refine them. We will recruit up to 15 stakeholder participants. Stakeholders will be purposively sampled, aiming to provide a range of perspectives and likely to include care-home staff, family carers, home-care workers, people with dementia, and support team staff such as crisis teams or dementia intensive support staff. Interviews will be conducted iteratively assessing new insights about programme theories and then conducting more to fill in any gaps where programme theories have not been properly addressed.
Summary of Results
Study title: Reducing refusals of care in personal care interactions between caregivers and people with dementia: Interview study
This research was part of a wider study called a realist synthesis. We examined past research to develop ideas. We wanted to find out why people living with dementia would be more likely to accept help with their personal care. For this study we interviewed relevant people to test out our ideas and refine them.
Who carried out the research?
This research was carried out by Tamara Backhouse, Anne Killett and Eneida Mioshi at the University of East Anglia and Reed Bratches at the University of Alabama in Birmingham, USA. The study sponsor was the University of East Anglia. The study was funded by NIHR ARC East of England through a DEM-COMM fellowship. There were no competing interests.How were the public involved?
Several public involvement representatives advised the study. This synthesis involved the Stevenage Dementia Involvement Group (one person living with dementia and three family carers) to develop initial ideas, the Lived Experience Advisory Group for the OPTIMISED DEMCARE study (3 residents’ relatives, 3 care home staff (1 carer, 1 manager, 1 team leader)), and a public advisor (former family carer of a person living with dementia) regularly throughout. Representatives provided advice on and helped refine study ideas and processes. This included discussing our initial ideas and findings from past research, how to find stakeholders for the interview study, and gaining feedback on study posters and final findings.When did the interview study take place?
The interview study took place at the University of East Anglia between 11.01.2024 and 24.01.2025. The searches for past research and creation and development of initial ideas took place before the interview study.Why was the research needed?
Personal care includes activities such as washing, dressing and going to the toilet. Personal care assistance can be difficult for people with dementia to receive and tricky for caregivers to provide. Sometime people living with dementia refuse help with care.What were the main questions studied?
The research aimed to learn how caregivers can improve personal care assistance for people living with dementia. This interview study was the final part of the study. We wanted to test out our ideas developed from reading past research with relevant stakeholders to see if they made sense and then refine our ideas.Who participated in the study?
15 stakeholders participated in the study.
· 1 person living with dementia
· 4 Family carers
· 3 Home care workers
· 3 Care home staff
· 4 Professionals supporting carersWhat did participants do?
Each person took part in a recorded research interview. These took up to 1-hour and were either face-to-face or online. All participants appeared to enjoy the process. There were no negative reactions.What did we do with the data?
We typed up interview discussions and took away any identifiable information. We then analysed the data and used it to refine our ideas.What were the results of the study?
We found there were several reasons a person with dementia may be more likely to accept care assistance:
· If the person with dementia trusts the caregiver and feels safe during care
· If the caregiver creates a positive connection with the person with dementia
· If the person with dementia’s needs are known and addressed
· If the care activity feels manageable for the person with dementia
· If the person with dementia feels comfortable (emotional, physical, and sensory comfort)
· If the person with dementia has a sense of being in control
· If the caregiver is working together with the person with dementia
· If the person with dementia is engaging with the care activity (or something else)To support each of these, we identified several actions that caregivers could try.
Key reasons a person with dementia accepts care:
Trust and safety
Positive connection
Needs are known and addressed
Care feels manageable
Care feels comfortable
Sense of control
Working together
Engaging with the care activity or something elseHow has this study helped patients and researchers?
There were no direct benefits for patients. The study has helped researchers gain knowledge to develop training for caregivers of people living with dementia. A publication has been submitted to an academic journal.Next Steps:
We are using the findings to develop care home staff training to improve personal care assistance for people living with dementia in care homes.Where can I learn more about this study? Tamara.Backhouse@uea.ac.uk
REC name
Social Care REC
REC reference
24/IEC08/0007
Date of REC Opinion
9 Apr 2024
REC opinion
Further Information Favourable Opinion