The University of Worcester's national study has revealed the full extent of the challenges faced by people who care for relatives with dementia.
The 18-month study, Crossing the Line, which was conducted by the university's Association for Dementia Studies, involved more than 200 family carers.
It aimed to understand their experiences of delivering personal care for someone living with dementia, the challenges they face, and the ways they try to make their lives easier.
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The study, funded by the National Institute for Health and Care Research, has led to the creation of new resources to help families.
Faith Frost, a 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 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.
Ms Frost said: "The booklets cover general things like dealing with complex emotions, to specific areas like washing, eating and drinking, and foot care.
"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 that they can find the information in one place.
"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, said: "We were particularly keen to hear the hidden voices of family carers supporting someone living with dementia.
"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.
"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."
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