Reducing Resistiveness and Enhancing Engagement in Personal Care in Severe Dementia (Pro-CARE)
As the population ages, dementia will affect more and more of us.
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 can be due to the person with dementia not understanding what the caregiver is trying to do, environmental factors, health status, or unmet needs. Refusals of care are common in people with dementia living in care homes and living at home. They can add to caregiver load and lead to service use or the person going into a care home.
The Pro-CARE study is funded by the Alzheimer’s Society and aims to learn more about refusals of care in late-stage dementia. The findings will be used to develop training and educational materials for caregivers to improve personal care interactions in dementia.
One of the biggest issues for caregivers is balancing the right of the person living with dementia to refuse assistance with their care against the evident need for personal care to take place.
Dr Tamara Backhouse, Alzheimer’s Society Research Fellow
Refusals of care in dementia present significant difficulties for both care workers and family carers. Refusals can be distressing for both the person living with dementia and caregivers and are legitimate targets for intervention.
Research Design
The research has three stages:
- Stage One: Informant-based questionnaires to care-home staff and family carers to determine the relationships between refusals of care and caregiver, patient and environmental factors.
- Stage Two: Interviews and observations to gain understanding of the knowledge and skills care-home staff and family carers have for providing personal care in severe dementia.
- Stage Three: A series of workshops where key stakeholders will be involved in developing the findings to produce training, educational materials and guidance with the aim of empowering caregivers to improve personal care interactions in dementia.
An advisory group, consisting of people with dementia, care-home residents, care-home staff and family carers meet to input to the research at regular intervals throughout the study.
Study Outcomes
Outcomes from the study will include:
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The creation of evidence-based educational materials containing advice in booklets, webpages, and pamphlets and a bespoke training programme. These will be tailored to specific personal care tasks for those who support personal care in severe dementia (one-to-one sessions) to:
- Increase carer skills,
- Reduce refusals of care, and
- Promote the person with dementia’s engagement in personal care.
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Improving skills in delivering personal care could increase the wellbeing of both people with dementia and those caring for them, and in turn potentially prevent hospitalisations and even delay institutionalisation.
Empowering caregivers to better cope with refusals of care in dementia and deliver improved personal care could lessen anxiety for the person with dementia and reduce the emergence of behaviours that may challenge caregivers.
They could also promote engagement and person centeredness in personal care and assist in reducing risk of infections through better hygiene.
Dr Tamara Backhouse, Alzheimer’s Society Research Fellow
