Major UK study reveals disappointing results for the effectiveness of the World Health Organisation’s online dementia carer resource
A major UK study into the effectiveness of the World Health Organisation’s online resource for carers of people living with dementia has revealed disappointing results.
ϲʹ-led researchers assessed the use of in a randomised controlled trial the UK for the first time - the findings of which have recently been published in the .
The research has been funded by a £1.48m grant from the National Institute for Health and Care Research (NIHR).
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. 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, it 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.
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. It is understood to be one of the largest ever randomised control trials evaluating a web-based intervention for dementia caregivers and the first large scale randomised control trail to evaluate the effectiveness of iSupport.
The research team was led by Professor Gill Windle, Director of Dementia Services Development Centre in the School of Health Sciences at ϲʹ, and involved scientists from University College London, the University of Strathclyde, along with Alzheimer Scotland and Carers Trust Wales.
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.
“These may be especially limiting in high-income countries where carers can access a range of services and may not deliver the desired benefits. We suggest personal contact from a care professional or peer support for tailored, therapeutic support and communication is needed alongside self-guided resources.
“In low and middle-income countries where resources for carers are extremely limited and professional support is minimal or not available, cultural and linguistic adaptations of iSupport may be an important resource in dementia 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.”
Professor Joshua Stott, iSupport investigator at UCL said, “Importantly our findings do not show that iSupport does not work, but due to the low adherence with iSupport we just found there is no evidence that it does. However, these findings do potentially call into question the wisdom of rolling out iSupport internationally, without pause as is currently done.”
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 ϲʹ, 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.