A major UK study into the effectiveness of a World Health Organisation’s (WHO) online resource for carers of people living with dementia has revealed disappointing results.
Researchers assessed the use of iSupport in a randomised controlled trial in the UK for the first time – the findings of which have recently been published in the Lancet Regional Health – Europe.
The WHO developed iSupport amid rising numbers of people with dementia, including in low and middle income countries, and in response to the increasing call for low-cost scalable interventions to help those who care for them.
Quality of life
Distress and depression are common among carers of people with dementia, which exacts a high price on them and the wider society.
The aim of the program is to address the mental and physical health problems associated with care and to improve the quality of life of those caring for people with dementia.
Since its release in 2019, the tool has been culturally adapted and implemented across 40 countries, but experts have warned that the evidence on its effectiveness is scant.
Though the research found that it does not reduce distress and depression for carers of people living with dementia at this time, it is still viewed as a useful resource.
Support resource
The randomised controlled trial involved 352 carers in England, Wales and Scotland. It examined the effectiveness of the interactive training and support resource, in its current format as a self-guided programme, in reducing distress and depression.
The research team was led by Professor Gill Windle, Director of Dementia Services Development Centre in the School of Health Sciences at Bangor University, and involved scientists from University College London, the University of Strathclyde, along with Alzheimer Scotland and Carers Trust Wales.
Dr Kieren Egan, in the Department of Computer and Information Sciences who led Strathclyde’s work on the study, said: "This work marks a significant milestone in advancing digital efforts to enhance the quality of life for people with dementia and their families.
While the randomised controlled trial did not show significant improvements in reducing distress or depression among carers, it highlights critical learning points.
“These include gaps in evidence regarding engagement with digital approaches, challenges in measuring outcomes within the context of dementia, and the need for further development, testing, and refinement of programmes to build upon the existing evidence base."
Digital transformations
Professor Windle said: “iSupport is a useful source of information for carers, but we did not find that it reduced carer distress and depression. We found that despite being digitally literate, carers in the research did not use iSupport as much as anticipated. The low use of iSupport points to wider limitations in self-guided online health resources, which are increasingly becoming part of mainstream care delivery as part of the digital transformations in health and social care.
Those tasked with implementation may need to think creatively about how they might enhance the impact of iSupport, for example through non-specialist led support to provide some human contact.
The randomised controlled trial of iSupport was one piece of work in this programme of research funded by the National Institute of Health and Care Research.
Alongside the trial, the team from Bangor University, UCL and University of Strathclyde successfully undertook major adaptations of iSupport and produced new online resources for young people, South-Asian carers in the UK and carers of people with rarer dementias.
The researchers say these make a valuable contribution to the limited resources available for these groups, as the majority of people living with dementia are supported and receive care from family members.