Reducing resistance to receiving personal care in advanced dementia

Lead Investigator: Dr Tamara Backhouse
Institution: University of East Anglia 
Grant type: Junior Fellowship
Duration: 36 months
Amount: £208,824

Why did we fund this project?

Comments from members of our Research Network:

'Fantastic proposal. Practical and including training of nurses and caregivers.'

'Could prove to be very beneficial to all involved with dementia care and reducing the stress levels of carers and people with dementia.'

'This project resonates with me, personal care in severe dementia is complex and difficult to balance and a study which would increase training, improve the quality of life or death of someone in the late stages of dementia is important to me.'

What do we already know?

Personal care can involve things like washing and using the toilet. Many people living with dementia might need more assistance with personal care as their condition progresses. However, the person with dementia may be very reluctant to have someone else help them with personal care, especially when they are in the more severe stages of the condition. This can be a very difficult situation for their carer, who wants to make sure that the person with dementia has their personal care needs met but does not want to do it against the person's will. 

There is currently a lack of resources for carers to use or consult when providing personal care for people with dementia. 

What does this project involve?

Dr Backhouse wants to understand the factors that influence why someone with severe dementia might refuse personal care. She also wants to understand how family carers and staff at care homes assist people with dementia with personal care, including those who refuse care. 

She will do this by consulting with people affected by dementia and family and professional carers through questionnaires and face to face interviews.

She will use this knowledge to create education materials for carers and to develop and test face-to-face training workshops that are tailored to individual care tasks. 

How will this benefit people with dementia?

Refusing assistance when it comes to personal care is common in people with dementia. This can add to carer stress and could contribute to the person with dementia going to hospital or in to a care home.

Understanding more about how to improve assistance with personal care will help to improve wellbeing and hygiene for the person with dementia. The tools developed will also help carers to be more confident in providing personal care.