Caregiving HOPE Study
There are currently 670, 000 family members who provide support for a person living with dementia at home. As a result of an ageing population, more and more family members will be relied upon to provide care at home. Healthcare professionals and service providers often assume and take for granted that family members are willing and prepared to provide support at home. A recent report by the Carers Trust states that carers go through ten specific stress trigger points whilst providing support for a person with dementia. The report suggests that specific information/services are needed at each point to help carers in their role.
We caught up with Study Coordinator Sahdia Parveen to find our more about the Caregiving HOPE Study.
What are the main aims of the study?
This research aims to find out whether carers feel an obligation to take on the role of carer, and whether they are willing and prepared for this role, and how this changes over time.
We are looking at how this affects carer outcomes, for example anxiety and depression. We are also interested in finding out what helps carers feel prepared for the different aspects of the care role and how they cope.
What does the study involve and how long does it last?
We would like 400 family carers of people with dementia to complete the same questionnaire three times in a year. This will help us explore how things change over time for carers.
We are also doing one to one interviews with 20 family carers three times over 12 months. The interviews will enable us to gain an in-depth perspective of the carer experience. One fun aspect of the interviews is that we provide carers with cameras to take photos of things and experiences that helped them feel prepared for the next step in caregiving and helped them cope.
What will the outcomes be?
One major outcome of the project will be to produce a book containing photos and interview quotes to provide tips and advice for future carers. The findings of the project will also help us to develop interventions to support carers to feel prepared and cope better with providing support.
Where is the study based?
This study is funded by the Alzheimer’s Society and the research team based at the School of Dementia Studies, University of Bradford. We are looking for carers in England to complete a questionnaire and the interviews are taking place in Yorkshire.
What makes this study different?
This study is being led by a panel of 15 members who include carers, people with dementia, carer support workers and members of the public. The panel were involved with developing the research questions, all the materials for the study and will also be developing the book and other outputs from the research. Their main job is to make sure the findings of the study are shared widely and that the research is relevant and useful to carers.
You can see if you are eligible for this study, as well as others around the nation, by logging into your Join Dementia Research account.
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