News Release

Lockdown mental health problems amongst family carers up to 10 times higher

Peer-Reviewed Publication

Swansea University

Family carers for children and adults with intellectual disabilities have reported rates of mental health problems under lockdown that are up to 10 times higher than parents without those responsibilities, a new study has found.

They 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 disability.

The challenges faced by informal carers - usually mothers - of children and adults with intellectual disability have been largely overlooked during the coronavirus crisis.

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

The team analysed 244 online surveys, which were completed during the strict lockdown period by carers of adults with intellectual disability, of children with intellectual disability, and a comparison group of carers for children without intellectual disability.

More than 90 per cent of the carers taking part were female. Eleven households had had direct experience of COVID-19.

Key findings were:

  • Moderate to severe anxiety - 43% of carers of children with intellectual disability reported this, compared with 8% of parents of children without intellectual disability.

  • Moderate to severe levels of depression were reported by 45% of carers of children with intellectual disability, compared with 11% of parents of children without.

  • Major depression was found in 31% of carers of children with intellectual disability but only 3% of parents of children without intellectual disability.

  • Social support - compared to parents of children without intellectual disability, carers of children with intellectual disability received significantly less support from other sources, particularly family and friends - despite their greater needs.

  • No respite: carers for adults with intellectual disability; the closure of adult day services and respite care meant that this group 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

Professor Willner added:

"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.


Notes to editors

About the research: Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G.H., Langdon P.E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S. and Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities.

Swansea University is a world-class, research-led, dual campus university offering a first-class student experience and has one of the best employability rates of graduates in the UK. The University has the highest possible rating for teaching - the Gold rating in the Teaching Excellence Framework (TEF) in 2018 and was commended for its high proportions of students achieving consistently outstanding outcomes.

Swansea climbed 14 places to 31st in the Guardian University Guide 2019, making us Wales' top ranked university, with one of the best success rates of graduates gaining employment in the UK and the same overall satisfaction level as the Number 1 ranked university.

The 2014 Research Excellence Framework (REF) 2014 results saw Swansea make the 'biggest leap among research-intensive institutions' in the UK (Times Higher Education, December 2014) and achieved its ambition to be a top 30 research University, soaring up the league table to 26th in the UK.

The University is in the top 300 best universities in the world, ranked in the 251-300 group in The Times Higher Education World University rankings 2018. Swansea University now has 23 main partners, awarding joint degrees and post-graduate qualifications.

The University was established in 1920 and was the first campus university in the UK. It currently offers around 350 undergraduate courses and 350 postgraduate courses to circa 20,000 undergraduate and postgraduate students. The University has ambitious expansion plans as it moves towards its centenary in 2020 and aims to continue to extend its global reach and realise its domestic and international potential.

Swansea University is a registered charity. No.1138342. Visit

For more information:

Kevin Sullivan, senior press officer, Swansea University

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