A NEW University of Worcester-backed study funded with more than £250,000 from the National Institute for Health and Care Research (NIHR) has been launched to examine challenges faced by family carers of people living with dementia in providing personal care.
Many family carers face challenges adapting to the change in role that providing personal care for their loved one brings and it can often be the tipping point for the person living with dementia to move into a care home.
This new study, co-led by Dr Shirley Evans, interim director at the University of Worcester’s Association for Dementia Studies, and Dr Tracey Williamson, consultant nurse for dementia at Betsi Cadwaladr University Health Board and Honorary Professor of Patient and Family Engagement at the University of Worcester, will include a UK-wide survey and interviews with family carers, to give a voice to the often-hidden family carers on this important topic.
The 18-month research project involves a number of co-applicants including a family carer, Midlands Partnership NHS Foundation Trust, Dementia UK and other members of staff from the University of Worcester.
They will lead on different aspects of the project, including recruitment of participants, data collection and the sharing of findings and resources whilst making sure that family carers and people living with dementia are actively involved in the research
Project partners are Alzheimer’s Society, Home Instead Worcestershire, Dementia Carers Count, Douglas McMillan Hospice and TiDE (Together Everyday in Dementia)/Life Story Network.
These partners will promote the study and pass on study information to eligible participants. They will focus on identifying routes for sharing and making use of study findings within their organisations and sectors.
They will also share and gain feedback on any pilot resources and training materials and some will evaluate their use directly in family carer support they provide.
Family carer Susan Briggs said: “As a family carer I had no previous experience of delivering care, let alone personal care to someone living with dementia. I felt out of my depth.
“This important research project will give family carers the opportunity to share not only their own experiences, but also their coping strategies which will in turn benefit a much wider audience. I look forward to working with everyone.”
The project, which has received £254,141 from the NIHR, is called Crossing the Line: providing personal care in the context of families affected by dementia.
