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Taking part in our research

If you would like to take part in the study, we will send you more information.

If you live in Wales, England or Scotland, please get in touch using the links below:

If you do not have access to email you can call our researchers. Please be aware we may not be able to answer your phone call straight away, but we will phone you back on the number you called us from.

Call us on:

 

Who can take part?

We are inviting 350 unpaid carers living in England, Wales, or Scotland to take part. You might be eligible if you have been helping someone with dementia at least weekly for at least 6 months, and the person you care for is not living in a full-time care facility.

We are also inviting 30 young people (aged 11–17) who help look after someone living with dementia.

 

What does the study involve?

You do not have to travel anywhere to take part, you can do this from your own home. A researcher will ask you to complete some questionnaires in an internet-based (e.g. Zoom) or telephone interview. The questions will ask how you are feeling and your role as a carer. Afterwards, you will be randomly allocated to receive iSupport or the booklet. This is so we can compare how people feel when receiving either of these products, and whether there are any benefits. For those who initially receive the booklet, we will provide access to iSupport later in the study.

We would also like to interview you again 3 months after the start and then at the end of the study, 6 months after the start. Each of the interviews should take no more than 1 hour, at a time convenient to you.

A smaller number of people taking part in the study will also be asked to take part in a more in-depth interview with another researcher who will ask more open questions about their experiences of using iSupport.

Taking part is completely voluntary, and if you take part you would receive a shopping voucher at the end of the six-month period.

Young carers (ages 11–17) would be asked to test a new version of iSupport adapted for the needs of young people. A researcher would ask you to complete questionnaires in an internet-based (e.g. Zoom) or telephone interview three times over a six-month period. Each interview would take approximately one hour.

 

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.

 

Please get in touch if you would like to take part in the study, and we will send you more information.

If you live in Wales, England or Scotland, please get in touch using the links below:

If you do not have access to email you can call our researchers. Please be aware we may not be able to answer your phone call straight away, but we will phone you back on the number you called us from.

Call us on: