Family carers for children and adults with intellectual disabilities have reported rates of mental health problems under lockdown that are up to ten times higher than parents without those responsibilities, according to a new study.

Swansea University reports the carers were five times more likely to report severe anxiety, and between four and ten times more likely to report major depression, compared to parents who did not have caring responsibilities for children with intellectual disabilities.

The challenges faced by informal carers, usually mothers, of children and adults with intellectual disabilities have been largely overlooked during the coronavirus pandemic.

To address this, a research team carried out an online study aimed at documenting carers’ mental health. Led by Professor Paul Willner from Swansea University, the project involved Swansea University researchers and colleagues from the universities of Warwick, Kent and Birmingham, and the Challenging Behaviour Foundation.

The team analysed two hundred and forty four online surveys, which were completed during the strict lockdown period by carers of adults with intellectual disabilities, of children with intellectual disabilities, and a comparison group of carers for children without intellectual disabilities.

More than 90% of the carers taking part were female. Eleven households had had direct experience of Covid-19.

The key findings were:

• 43% of carers of children with intellectual disabilities reported moderate to severe anxiety, compared with 8% of parents of children without intellectual disabilities
• Moderate to severe levels of depression was reported by 45% of carers of children with intellectual disabilities, compared with 11% of parents of children without intellectual disabilities
• Major depression was found in 31% of carers of children with intellectual disabilities, but only 3% of parents of children without intellectual disabilities
• Compared to parents of children without intellectual disabilities, carers of children with intellectual disabilities received significantly less support from other sources, particularly family and friends, despite their greater needs
• The closure of adult day services and respite care meant carers for adults with intellectual disabilities felt they had significantly less support than carers of children, who could still send their children to school if they wished

Professor Paul Willner of Swansea University, head of the project, said “It is likely from these data that the mental health of carers of children and adults with intellectual disability has been adversely affected by the pandemic. This effect is over and above any pre-existing mental health problems. They are also affected to a greater extent than parents of people without disabilities but are less well supported. Our findings are one illustration of how the pandemic has amplified existing inequalities.”

The authors make recommendations on supporting carers better, including:

• Long-term consistent support from a named key worker
• More nurses trained in learning disabilities, with carers’ mental health in their remit
• More respite provision, to be continued through any further lockdowns
• Services better equipped to offer support to carers remotely via phone or online
• Access for carers to specialist mental health support
• Peer support groups

Paul Willner said “We should acknowledge the essential role played by informal carers and take steps to ensure they are appropriately and proactively supported. There are significant costs for the carers themselves and for society more generally if mental ill health robs them of their ability to continue providing care for their loved ones.”

The research was published in the Journal of Applied Research in Intellectual Disabilities.