iSupport for Dementia Carers study
Research type
Research Study
Full title
A randomised controlled trial and feasibility study of the effects of an e-health intervention ‘iSupport’ for reducingdistress of dementia carers, especially in the ongoing pandemic of COVID-19.
IRAS ID
311565
Contact name
Gill Windle
Contact email
Sponsor organisation
Bangor University
ISRCTN Number
ISRCTN17420703
Clinicaltrials.gov Identifier
2021-16915, Bangor University School of Health and Medical Sciences Academic Ethics Committee approval
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Most people living with dementia in the UK are cared for at home by a family member or friend. Many unpaid carers experience poor mental and physical health compared to people who are not caring for someone with dementia.
The Randomised controlled trial (RCT) aims to recruit 350 unpaid carers living in England, Wales, or Scotland in order to assess whether an online education and self-care website called ‘iSupport’ is more effective compared to reading an information booklet at reducing distress and symptoms of depression (primary outcomes), and improving mental wellness and knowledge of dementia (secondary outcomes). A researcher would administer outcome measures in an internet-based (e.g. Zoom) or telephone interview three times over a six month period. Out of the participants who complete all three interviews, up to 50 would be asked some additional open-ended questions about what it was like to use iSupport as part of a process evaluation.
The feasibility study aims to refine and adapt iSupport specifically for younger people who have some caring responsibilities (ages 11 – 17), and test if it would be feasible to conduct a full-stage study with younger people.
In either study cohort, to be eligible, participants need reliable access to the internet, to have been caring for someone with any type of dementia at least weekly for at least 6 months, to not be receiving mental health treatment at baseline, and the person they care for should not be living in a full-time care facility at baseline.
If we show iSupport is effective, service providers will benefit by knowing there is a proven service they can recommend, unpaid carers will benefit from reductions in psychological distress and improvements in skills and resilience, and people living with dementia will benefit from having a better-equipped informal carer.
Research summary
Why did we do this trial?
NHS guidelines recommend informal carers of people living with dementia should be offered training and guidance. This is to help them develop care skills and manage their mental health, because the role can be stressful. Many carers experience mental and physical illness. The World Health Organization (WHO) recommend access to affordable, effective, well-designed, online technologies for education, skills- training and support for dementia carers. We wanted to examine whether an online self-guided training and support programme developed by the WHO called ‘iSupport’ reduced carer distress and depression, and whether it was good value for money.What did we do?
We undertook the first trial of iSupport in the UK. 352 carers aged 18 and over agreed to take part for 6 months, unless they chose to withdraw at any point. Everyone received either access to the iSupport website, or usual care. Participants were interviewed three times about their health and caregiving experiences. A smaller study adapted iSupport for young carers and explored how useful, usable and acceptable the adapted version might be ahead of any further research.What did we find?
Despite many participants remaining with the trial until completion, their use of iSupport was low. Some carers reported some benefits but said they didn’t have time to use it enough. We did not find that iSupport helped carers distress and depression, and could not say it was cost-effective, although the costs of delivery were low (£10.54 per person) and the use of health care resources were significantly less in the iSupport group compared to usual care by 6 months. Some carers suggested iSupport could be improved through the involvement of a professional for contact and guidance. We successfully adapted iSupport for young carers, but failed to recruit enough participants to test whether we could conduct a future trial with this group.What does this mean?
iSupport is being rolled-out around the world by the WHO and our trial suggests that in its current format it is unlikely to be effective as a self-guided intervention in the UK. The findings from this programme of work will inform both the ongoing global implementation and future international research. Given the low costs of delivery, we produced an easy to navigate website, which now hosts iSupport for adult carers, the related Welsh version, the young carers and also South-Asian adaptations. All are freely available on our isupportdementiacarers.co.uk website, and also on the WHO Global Dementia Observatory Knowledge Exchange Platform.REC name
London - City & East Research Ethics Committee
REC reference
22/LO/0688
Date of REC Opinion
2 Nov 2022
REC opinion
Further Information Favourable Opinion