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A new study funded by the National Institute for Health and Care Research (NIHR) aims to gain a better understanding around the 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.

Mrs Susan Briggs, a family carer, 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.”

This new study, co-led by Dr Shirley Evans, Interim Director at the ¹ú²úÊÓƵ’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 ¹ú²úÊÓƵ, 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.

Dr Evans said: “The Alzheimer’s Society estimates that there are over 670,000 people in the UK who are primary unpaid carers for people with dementia and many of these provide personal care. There has been little research into peoples’ experiences and needs. I look forward very much to co-leading this project and working with our expert co-applicants and partners to enhancing knowledge and understanding and producing guidance to support family carers and those who support them.”

Professor Williamson, who led the successful funding application prior to joining the Health Board, added: “This is essential research that will help us gain a better understanding of how carers are affected by delivering personal care to a person with dementia and what strategies they develop to manage. We will be co-designing a number of resources to support family carers with personal care giving which may include training, through a set of workshops towards the end of the study.”

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 ¹ú²úÊÓƵ. 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 share and gain feedback on any pilot resources and training materials and some will evaluate their use directly in family carer support they provide.

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.