Since its launch three years ago, the main aim of Join Dementia Research has been to accelerate dementia research, helping to make it quicker and easier for researchers to find suitable candidates for their studies and empowering patients and the public to find studies they wish to take part in. The Caregiving HOPE study is one of the studies for which Join Dementia Research has made a difference in the recruitment process, helping to reach a huge number of volunteers in the range of a few days.

We caught up with Dr Sahdia Parveen, Senior Research Fellow at the Centre for Applied Dementia Studies, Faculty of Health Studies, in Bradford.

The Caregiving HOPE study

Caregiving HOPE studyIncreasing numbers of family members are being relied upon to provide support for people living with dementia at home. Service providers often take it for granted that family members are willing and prepared to provide care, particularly in South Asian families who are thought to ‘look after their own’.

The aim of Caregiving HOPE is to explore feelings of obligation to provide care, willingness to provide care, how prepared carers feel to provide care, and how confident they feel in the caring role and how it affects their well-being.

We have recruited both white British carers and carers from a South Asian background to take part in the study, with a view to exploring support needs in groups with different cultural backgrounds. Also, in a second stage of the study, we examined attitudes, willingness and preparedness of future carers, using questionnaires and discussion groups. Our aim was to explore awareness of care-related issues around dementia in white British and South Asian groups with a view to identifying areas with which carers of the future need more support.

Dr Parveen, the principal investigator, said:

“Drawing on my previous experience of working with carers, I hope in this study to deepen our understanding of the challenges faced by people with different cultural backgrounds and how we can best draw attention to them. Identifying areas of support will help inform future development of support services and awareness campaigns, as well as recommending coping mechanisms for carers of people with dementia.”

What does taking part in the research involve for participants?

Current carers of people with dementia have been involved in the study for twelve months, completing questionnaires and participating in in-depth interviews. This allowed us to understand changes over time and if these predict whether carers have positive or negative experiences of care. Carers who participated in the interviews have welcomed the opportunity to express themselves on multiple occasions, exploring how the carer role develops in response to their family member’s changing needs.

One aspect of the research involved carers taking photographs of meaningful aspects of their home / environment and social network, and this encouraged some to focus on cherished parts of their lives.

Reflecting on being involved in the study, one carer said:

“I found completing the survey therapeutic as the many varied questions covered my personal situation and encouraged me to think about my family relationships.”

Another carer said:

“It was really nice to be asked about how willing I am to provide care because this is not something carers are often asked by other people.”

Making a difference to patients and researchers: was Join Dementia Research helpful to deliver the study?

Recruitment of carers and non-carers took the form of a number of approaches, including working with NHS Trusts, ‘word of mouth’ methods, via social media, and engagement with carer support groups and other care-related organisations.

The recruitment mechanism provided by Join Dementia Research proved invaluable in terms of reaching out to various groups that proved difficult to recruit elsewhere, particularly younger carers and those from a South Asian background, to the point that we exceeded their original targets for recruitment by a considerable margin. The strength of this method is that people have already opted in to contribute to research, so the return rate from surveys sent through the post was a lot higher than other approaches where we had sent out packs to people who had not previously expressed an interest in contributing to research.

When might it be possible to put learning into practice to help people with dementia?

The research will lead to the production of a booklet providing ‘tips for carers’ with the aim of helping other carers to feel more prepared for different stages in the caring role. Additionally, the work will inform the development of interventions for carers with a particular focus on preparation for different aspects of the carer ‘journey’, while an understanding of cultural values will enable service providers to tailor services to diverse groups of carers. We hope to share their findings in a wide range of places, including care support services, academic conferences, and various publications. The Good Tips booklet will be made available to as many as carers of people with dementia as possible. We also hope that the first findings from the study will be available in late 2018.

anxietyAre you interested in helping researchers and taking part in dementia studies? There are over a 100 studies around the UK on Join Dementia Research currently looking for people like you to take part in studies. Sign up today to keep up to date with the latest studies you can take part in.

If you are a researcher, Join Dementia Research could help you meet your recruitment target faster. Take a look at our information for researchers to see if it may be suitable for your study.