Are we willing and prepared to care?

The Centre for Applied Dementia Studies is exploring what influence obligation, willingness and preparedness has on the well-being of family carers.

Sahdia Parveen, Senior Research Fellow in the Centre for Applied Dementia Studies, was awarded £225,000 from the Alzheimer’s Society for the Caregiving HOPE study in 2015. The study, completed in 2018, explored how obligation, willingness, and preparedness to care, influences family carer wellbeing. The research also explored the differences on coping with caregiving in South Asian and British cultures.

It is expected in the future that most of the support people with dementia receive will be provided by family in the home. There are currently 670,000 family members in the UK caring for a relative with dementia and approximately 290,369 young carers aged 16-24 years. Caring for a loved-one can take its toll, so supporting these carers now and into the future is extremely important. Sahdia’s research could help shape the future of dementia home care and inform us of how willing and prepared our next generation of carers are likely to be.

The Caregiving HOPE study involved over 700 carers and 1200 members of the public and received considerable media attention, including the BBC, and the Yorkshire Post. Because of the success of the project, the Alzheimer’s Society awarded the team a further £2,500 for dissemination of the outcomes of the study. The main output from the project is a book describing how carers cope with supporting a relative with dementia at home. This is being distributed to carer groups, GP surgeries and memory clinics. The next stage is to apply for NIHR funding to co-design interventions to facilitate carers to feel more prepared in their care role.

Sahdia is a health psychologist by background and a mixed methods researcher, with experience of working in various health-related fields. She joined the Centre for Applied Dementia Studies in 2013 and her role involves developing project proposals and applying for funding. Sahdia has been working with Professor Jan Oyebode in developing the dementia and diversity research theme.

Sahdia’s first project after her PhD was a European Framework 7 funded project looking at medication adherence in 17 different European countries. After the completion of this project she joined the Yorkshire Quality and Safety Group at Bradford Institute of Health Research as a research fellow. She worked on various projects aiming to improve patient safety in acute care settings and developed an interest in implementation sciences and patient and public involvement.

Although Sahdia’s research focuses on dementia, she continues to have an interest in patient safety research. She currently collaborates with colleagues from the University of Manchester and Deakin University, Australia, on projects related to patient safety in primary health care settings. She has been involved with developing a new patient measure of safety in primary care which is currently being implemented and further evaluated in primary care in France and Australia.

Sahdia is also working on various other projects including Dementia Detectives. Dementia Detectives is a workshop aiming to raise awareness and reduce the stigma associated with dementia among young people. The team are currently evaluating the effectiveness of the workshop with regards to impact on knowledge and attitudes. Once the pilot evaluation is complete, they intend to apply for funding to support further development and dissemination of this project.