A national study has revealed the full extent of the challenges faced by the family carers of people who live with dementia.
Faith Frost, Researcher.
Crossing the Line, a study by 成人B站’s Association for Dementia Studies was funded by the National Institute for Health and Care Research under its Research for Patient Benefit Programme.
The 18-month study, which involved more than 200 family carers, aimed to understand their experiences of delivering personal care for someone living with dementia, the challenges they face, and the strategies they use to make their lives easier, and has led to the creation of brand-new resources to help families.
Family carers often face challenges adapting to the role that providing personal care brings, and this can be made worse by a lack of knowledge and skills, limited access to information, guilt and embarrassment.
Faith Frost, researcher on the project, said: “We had an idea of some of the areas where people face challenges; people feel like it’s all on them to find information and access the right support.”
The findings from the study enabled the development of accessible resources including a website, films and a series of booklets covering a wide range of topics around supporting someone living with dementia.
Faith Frost said: “The booklets cover general things like dealing with complex emotions, to specific areas like washing, eating & drinking, and foot care.”
She continued: “The idea is that you can go straight to the topics which are relevant to you, being a carer takes up a lot of time, so we wanted to ensure they that they can find the information in one place.”
She added: “The people we’ve shared it with have been impressed at how easy it is to understand, and they’ve appreciated how the resources are broken down into 15 key topics so they can find what’s relevant to them.”
Professor Dawn Brooker MBE, Professor Emeritus at the Association for Dementia Studies was also involved in the study.
She said: “We were particularly keen to hear the hidden voices of family carers supporting someone living with dementia.”
She continued: “They told us time and time again that they got no help, that professionals didn’t offer information in this area and that really, they felt left to their own devices to develop strategies for themselves.”
She added: “We hope that the resources provided by the Crossing the Line project will offer practical suggestions for coping with the pressures that caring presents, and that it’ll help carers know how best to get the help they need.”
You can access the resources by visiting the 成人B站’s website:
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