Understanding personal care interactions in severe dementia (Pro-CARE)
Research type
Research Study
Full title
Reducing resistiveness - and enhancing engagement - in personal care in severe dementia (Pro-CARE)
IRAS ID
251339
Contact name
Tamara Backhouse
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Summary of Research
Understanding personal care interactions in severe dementiaPeople with dementia develop high needs for assistance with their personal care, and in the later stages can be reluctant to receive assistance with these daily tasks. This can create a difficult situation for caregivers. If care is not provided the person with dementia could be neglected or receive reduced care leading to poor hygiene, urine burns, or infections. Or if care is provided it could be against the person’s will or restraint may be used.
This project aims to:
• Determine the factors influencing resistance-to-care
• Explore how informal family carers and formal care-home staff give assistance with personal care to people in the severe stages of dementia, including to those reluctant to receive or resisting care
• Create training to add to informal and formal carer skillsThe project has three stages. Stage 1: questionnaires to family carers and care-home staff, to find out about resistance 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 severe dementia. Stage 3: workshops to develop training to aid carers in assisting with personal care.
This study has potential to improve assistance with personal care for people with late-stage dementia, which could help to maintain or increase their engagement and reduce any anxieties or agitation they may experience. The training developed could empower those assisting people with late-stage dementia with personal care. This could increase the wellbeing of both people with dementia and those caring for them, and potentially delay institutionalisation.
Summary of Results
This study was carried out by a research fellow (Dr Tamara Backhouse) based at the University of East Anglia (UEA), Norwich.The Pro-CARE study was funded by the Alzheimer’s Society (Alzheimer's Society - United Against Dementia (alzheimers.org.uk)) and sponsored by UEA (UEA: University of East Anglia | Norwich, UK - UEA).
Introduction
People with advanced dementia require assistance with their personal care such as washing, dressing, and going to the toilet. Sometimes this assistance is refused. Refusals of care can be due to many reasons such as how the caregiver approaches the person, or the person’s health status or unmet needs. Refusals can be distressing for both the person with dementia and their caregiver. Refusals of care can lead to issues with hygiene, infections and conflict between the caregiver and person with dementia.Aims
This fellowship aimed to:
• find out the factors associated with refusals of care.
• examine the skills, understanding and knowledge family caregivers and care-home staff have for preventing or managing refusals of care.
• develop resources for caregivers.
• gain knowledge to develop caregiver training to provide the best possible personal care for people with dementia.
This should make personal care assistance acceptable to the person with dementia and reduce refusals of care.Methods and results:
The research had six parts:
Part 1: systematic literature review of the research evidence to find out what reduces refusals of care.
Findings: There was most research evidence for:
• Playing recorded music during care activities
• Offering different types of baths such as a strip wash
• Positive communication techniquesPart 2: development of a refusal of care questionnaire for caregivers.
A new questionnaire was developed called the Refusal of Care Informant Scale (RoCIS). This scale was used in Part 3 of this research and after data collection an analysis took place to validate the scale.Part 3: questionnaires answered by caregivers (106 family carers and 24 care home staff) to find out the factors associated with refusals of care. Recruitment was promoted the Join Dementia Research database and leaflets to family carers and information to care home managers. As the study involved home visits to participants for data collection recruitment focussed on residents living in Norfolk, Suffolk, Essex, and Cambridgeshire, however after the COVID-19 pandemic started, data collection moved to online and telephone methods and the geographical area for family carers recruited through Join Dementia Research expanded to include Southeast England and the Midlands. Once the COVID-19 pandemic started no further data were collected from care-home settings.
Results: Two factors were found to be associated with refusals of care in the study sample.
Factors ASSOCIATED with refusals of care:
Agitation
Dependence in activities of daily living
Factors NOT ASSOCIATED with refusals of care:
Caregiver dementia training (none or some)
Care setting (care home or family home)
Dementia type
Gender of the person with dementia
Ethnicity of the person with dementia
Age of the person with dementia
Health status of person with dementia
Caregiver management type
Caregiver support needs
Caregiver confidence
Psychotropic medication use
Other illnesses or diseases
Modifications to the bathroom or bedroom environment
Professional input within the last three months
Behaviours due to having dementiaPart 4: interviews with caregivers (20 family carers and 12 care home staff) to find out how they managed refusals of care and learn about their skills and understanding of providing personal care to a person with advanced dementia.
Findings: Caregivers used multiple strategies to encourage the person with dementia they assisted to accept care, to get care completed and to reduce refusals of care. They were:
• Finding the right moment to care
• Using specific communication strategies
• Simplifying and adapting care
• Maximising their confidence to care
• Seeking support from others
Knowledge of the person with dementia and their relationship with the person guided and shaped caregiver actions. Caregivers used skills such as communication techniques, adaptability and flexibility, teamwork, assessing cues from the person, and time management. Caregivers adapted to the person’s needs to help them through the care interaction.Part 5: video-recorded observations of personal care interactions (7 care home staff, 9 care home residents living with dementia, 5 family carers, 5 people supported at home living with dementia). Observations were to learn about caregivers unspoken knowledge and skills in providing care to a person with advanced dementia and to learn how a person with dementia experiences care assistance.
Findings: caregivers were highly skilled at nurturing and attending to the person. Skills included:
• Inviting the person to be part of the interaction
• Putting the person at their ease
• Guiding the person through the interaction
• Adapting their own actions to the pace and space of the person
Observations enabled an examination of caregivers’ skills and knowledge that they themselves may have not been aware of. For example, their positioning and non-verbal communication. Most actions showed them to be in-step with the person. Challenging care interactions were rare. When they occurred caregivers were flustered, had difficulties working out what the person was trying to communicate, were uncertain of how to proceed, and hurried and persisted when the person indicated they wanted to refuse care.Part 6: workshops with family carers care-home staff, and other dementia professionals such as Admiral nurses, care-home dementia specialists, occupational therapists, and clinical psychologists to start to develop the study findings.
The workshop attendees gave Dr Backhouse feedback on a booklet called “Assisting People with Dementia with their Personal Care: Ideas and Tips for Carers” developed as part of this study. Dr Backhouse then revised the booklet before disseminating it. The booklet is available here: https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbW0A52-2FTjzYo4GPYo7BAfU4dozlOOzlvRom-2BBRr-2BL-2B5uXO7qct3asv938d-2BvXVhOe3582Sw1zp2I3zzS7Rf-2BpqYOYCw7xQLziI6mgM2YG29BWq3Uby3irbaP6-2Ba3wpV5u7hFuZnNb1Kr9Z9s6RtzpkpJauXc6iZbRrYOZ5zwczKKSYOOf-2FYpQwtBRECGJOXjUw-3D-3D5IkM_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YLkBTXSj4rmv-2BYh-2FJt5Cz7VYarmK8ttIMD6j0IC7JKFPD0mErboqimUuMVDfusVhmcLhgHrXCX5rNCAPzDnOha30r98LKhaeYJLHXPwVVNdPxY6Uv5qiHH7L5CDznTm-2FwEtdxw-2F31f-2F4tk8CMZnomy02OpsKccz1Jy8SgIhZodw4A-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C1f992f282d0b4d7de53f08da64e6dfc0%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637933239996935191%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=q%2BRQpIpwwj7jEdo06IxNw7vbxlKc5hcX62kK%2B01Jvk4%3D&reserved=0Workshop attendees thought the findings from this fellowship would be useful for caregivers. They suggested that family carer and care-home staff training should be delivered differently. Care-home staff should have group training opportunities so that information could be shared, and all staff work in the same way, whereas family carers should be offered individualised and tailored training/support that works for their circumstances and does not rely on them publicly sharing their own experiences, since some carers can find this daunting and stigmatising.
All attendees agreed that training should not be solely document-based but include practical, reflective (maybe with video-recordings) and/or role play elements. Two clinical psychologists were keen to collaborate further to assist in the development of a training intervention based on psychological theories.
Patient and public involvement: The study had an advisory group made up of care-home staff and family carers. The advisory group were involved in the design of the data collection methods, creating documents for participants and analyses. They were also involved in creating the booklet for caregivers. This booklet has been well received and is now electronically available in Singapore and being used in Australia to aid university teaching.
Future work: Dr Backhouse (the fellow) is writing a new grant application to develop the findings from this research into a training package for care-home staff and to test it. The training will be co-produced with key stakeholders and relevant professionals. Dr Backhouse hopes to make the booklet available to caregivers in hard copy
REC name
London - Queen Square Research Ethics Committee
REC reference
18/LO/1677
Date of REC Opinion
14 Nov 2018
REC opinion
Further Information Favourable Opinion