An online, psychological training programme supported by the Centre for Ethnic Health Research has been found to reduce anxiety and depression among people caring for family members with dementia.
New research, published in The Lancet, found that carers using the ‘iACT4CARERS’ programme experienced improvements in their mental wellbeing after just three months, compared with those receiving usual care alone.
Created by the University of East Anglia (UEA), the platform is designed to support people caring for loved ones with dementia through an evidence-based, psychological approach called Acceptance and Commitment Therapy.
Caring roles can vary considerably between ethnic minority communities and White British families. Within many South Asian families, for example, responsibility for caring often rests with daughters or daughter-in-laws, resulting in a younger carer population than typically seen in White British communities.
Access to support services can also be more challenging for carers from ethnic minority backgrounds due to a range of barriers. To help address this, the Centre for Ethnic Health Research (CEHR) has worked alongside community members to co-design the ‘iACT4CARERS’ programme, ensuring it is culturally appropriate and better reflects the needs of diverse communities.
Barbara Czyznikowska, Community Engagement and Inclusion Manger at the CEHR, said: “For many individuals from ethnic minority communities, caring for a loved one with dementia is a deeply held family responsibility, meaning carers often suffer in silence rather than seek help.
“Cultural expectations, stigma and unequal access to support leave many at greater risk of developing negative mental health.”
She added: “Culturally inclusive services like this are not just important, they are essential to reaching those who need support most and tackling persistent health inequalities.”
A total of 496 people supporting a family member with dementia took part in the study. Half were given access to digital therapy via a platform called ‘iACT4CARERS’, alongside their usual care, and the other half received usual care only.
Participants allocated to receive the digital therapy were asked to complete eight online sessions. They received additional support from trained NHS support workers based at 20 NHS services across England, delivered through written feedback and, where needed, optional phone or video calls.
According to the results, those with access to the ‘iACT4CARERS’ programme had lower anxiety and depression levels compared to those receiving usual care alone.
The findings are part of a £1.23 million project funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme.
Lead researcher Dr Naoko Kishita, from UEA’s School of Health Sciences, said: “We know family carers of those living with dementia are at higher risk of mental health problems. Many family members around the world provide unpaid support to a person with dementia.
“Research shows that around one in three people supporting someone with dementia experiences anxiety or depression, but many struggle to access help because they cannot leave the person they support or because health and care services are under pressure.”
Dr Kishita added: “To address this, we created a digital platform that focuses on helping people handle difficult or troubling thoughts and feelings, whilst taking actions that are important to them, like looking after their own health.
“We found that people who used the digital support platform had noticeably lower anxiety after three months compared with those who just received usual support. Importantly, these improvements were sustained at the six-month follow-up.”
Dr Kishita concluded: ““The improvement wasn’t just statistically significant – it was meaningful in real life, meaning people genuinely felt better. This is really important because iACT4CARERS offers support that is flexible, affordable and easy to access from home.
“The programme only needs a small amount of support from trained support workers, which means it could help many more people get the mental health support they need.
“We hope this system could be a powerful tool to support family carers, who we know are vulnerable to mental health issues. Because it’s online and needs only minimal professional support, it has strong potential to be rolled out across the UK and, potentially, internationally, to support carers in their important work.”
This study was led by UEA in collaboration with University College London (UCL), the CEHR, Uppsala University (Sweden), Universidad Rey Juan Carlos (Spain), Universidad Autónoma de Madrid (Spain) and Norfolk and Suffolk NHS Foundation Trust.
The new study is now available in The Lancet here.
The CEHR works to address inequalities, associated with ethnicity, in health care access and health outcomes. It does this by supporting individuals and organisations to involve and understand the needs of ethnic minority and underserved communities when planning and undertaking research and healthcare delivery.
For further information about the CEHR, click here.
