Research Network volunteer Sandra Barker, who is also project monitor for Caregiving HOPE, describes how Network volunteers have been supporting research into caring for a person with dementia.
About Caregiving HOPE
In 2015, Alzheimer’s Society agreed to fund a project at the University of Bradford to look at how obliged, willing and prepared people from both white British and South Asian communities are when faced with caring for a person with dementia.
‘Public and patient involvement’ is key to research at Bradford. The project’s Principal Investigator, Dr Sahdia Parveen, brought a project panel together to guide and support the research.
The panel comprised key professionals as well as carers. Along with Wendy Mitchell and U Hla Htay, I was one of the designated Research Network monitors for the project and we agreed to join the panel.
It has been an enlightening and very rewarding experience.
Sahdia wanted to look at how carers and future carers view caring for someone living with dementia, and what factors – in terms of obligation, willingness and feeling prepared to care – affect their caring role and their ongoing health and stress levels.
She was also keen to explore the assumption that South Asian families ‘will look after their own’ – is that the case, and how do family members feel about that?
Key findings include that South Asian carers felt more culturally obligated to provide care, and also that white British carers were more willing to provide emotional and nursing care. Both groups were equally willing to provide practical support, such as cooking and cleaning.
For all carers, being better prepared was associated with being more willing to provide care and with less ‘carer burden’ – the stress, depression and sometimes anxiety that carers may face.
As Research Network volunteers and panel members, we have been fully involved in developing research materials and in helping and advising on the recruitment of participants for the study.
We also supported Sahdia in a successful application for an Alzheimer’s Society dissemination grant. This will be to publish a book of carer experiences, and also to hold an event for carers and professionals to report on the study and to consult them on what we do next with the results.
It is very clear that, given the extent to which the country relies on family carers, better support for those carers is key.
More about Caregiving HOPE
Visit the project website to learn more about the study and the key findings.