Report highlights strain on ageing parents caring for their autistic children into adulthood

Older people – some in their 80s and 90s – are caring for adult children with severe learning disabilities or autism, a report has found.

Researchers say the study, by the University of Bath for New Forest Mencap, highlights the strains placed on families as a result of the ageing population.

Two-thirds of adults with learning disabilities and autism live with their families, mainly with parents, according to figures.

In the late 1940s, life expectancy for people with conditions such as Down’s syndrome was 12, but it has increased to 66 thanks to medical advances.

The study’s authors say this has created a situation in which many adult carers, some in their 80s and 90s, are caring for adult children in their 50s and 60s.

Professor Rachel Forrester-Jones (pictured), director of the centre for the analysis of social policy at the University of Bath’s Department of Social & Policy Sciences, led the work.

“The issue of older family carers providing care to their adult children with conditions such as Down’s syndrome has gone unnoticed and under the radar for too long. With an ageing population, this issue will reach breaking point if it isn’t tackled,” she said.

“I spoke to family carers, including parents, who reported how they have been caring for their now older, adult children throughout their life.

“Some are dealing with their older children slowing down, either because they have reached a plateau of skill acquisition, or because they are declining in health and skills, or because they are locked into their older parents’ slower pace of life.

“Others are dealing with increasing and various forms of challenging behaviour, while experiencing frailty and ill health themselves.

“Yet they don’t feel they are partners with professionals in terms of care. Rather, they are still fighting with the authorities to gain benefits and formal care and, in the face of depleted and disappearing daily activities and services, due to austerity cuts, they end up organising everything themselves.

“We need to find a way to comprehensively register the number of older people with learning disabilities and/or autism, as well as their older carers, to find out who needs support.

“This must include greater co-operation between GPs and adult services, but also a plan of action which is proactive in providing information and support to assist older carers. A key first step is to include older parent carers in all levels of planning.”

The research looked at a small-scale study, featuring 21 older carers, carried out in the New Forest during 2018 and 2019.

Findings suggest that cuts to services, including day centres, older carers are having to take on more responsibility for locating, financing and managing support for their children.

The work also highlighted a fear faced by older parents on what would happen to their disabled adult children if they died.

Liz Rolfs, of New Forest Mencap, said: “There are too many instances of elderly parents appealing for help.

“It is usually, but not always, an elderly mother who says that they have cared for their own mother, they have cared for their husband and they are still having to care for their adult son or daughter. They are tired.

“Respite care that is suitable is hard to get, so it is difficult to take a break.

“They would like the right to retire and want to be able to go to their grave knowing that their child is healthy, happy, active and secure.”

The report will be officially launched at an event in Brockenhurst on Wednesday.

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