Taking part in our research
Who has taken part?
352 unpaid carers living in England, Wales, or Scotland agreed to take part. To be eligible, participants had been helping someone living with dementia at least weekly for at least 6 months, and the person they care for was not living in a full-time care facility when they joined the study.
We have also interviewed young people (aged 11-17) who helped us develop “iSupport Young Carers”. Parents and professionals working with young people were also interviewed to learn more about why it is challenging to reach young people who help look after someone living with dementia.
What does the study involve?
Our researchers asked all participants to complete some questionnaires in an internet-based (e.g. Zoom) or telephone interview. The questions ask about feelings and the role as a carer, among other things. Afterwards, participants randomly received either iSupport, or a booklet about being a carer. This is so we can compare how people feel when receiving either of these products, and whether there are any benefits. Participants who initially received the booklet are provided access to iSupport later in the study. Participants were invited to two more interviews (3-months and 6-months after they initially joined the study).
A smaller number of people taking part in the study were also invited to a more in-depth interview with another researcher, asking more open questions about their experiences of using iSupport.
Why are we doing this research?
Most people living with dementia are cared for at home, supported by a family member or friend who may have limited knowledge of the condition. This can be stressful, and many unpaid carers experience poor mental and physical health compared to people who are not caring for someone with dementia. COVID-19 has also meant that many older people have had to self-isolate, placing increasing pressures on carers.
A digital platform has the potential to better support carers to access the support, skills and information they need, particularly when they have reduced access to physical places of support.
How will this research help unpaid carers?
If we can show that iSupport helps carers, then those who provide dementia services will be able to recommend iSupport as an effective support tool. Having an effective and accessible online service for carers could benefit both the carer and the person living with dementia. Improving care at home can delay care-home admission, which reduces care cost and has wider benefits for society.
Equally, if we find that iSupport is not helpful, or needs to be used in combination with other sources of support and information, then we can recommend adapting the platform so that it is more useful to those who need it most.
How is the study organised and funded?
The study is sponsored by Bangor University, who are also the co-ordinating centre. Carers Trust Wales, University College London, the University of Strathclyde and Alzheimer Scotland are partners in the project.
Our study has received ethical approval from Bangor University (AEC 2021-16915) and is registered on a study database called the ISRCTN registry (ISRCTN17420703).
This project is funded by the National Institute for Health Research (NIHR) Public Health Research programme (project reference NIHR130914). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.