A report from the Changing Ageing Partnership (CAP) reveals a lack of support for older people who care for adult children with disabilities.
The research, by Dr Karola Dillenburger at Queen’s University Belfast, recommends that more should be done to enhance the development of life skills, such as personal care skills, domestic and social skills, or employability for disabled adults who are cared for by their parents. Early behavioural intervention that focuses on these kinds of skills is recommended to improve the choices available to adults with disabilities and their families.
The research suggests that the psychological health of older carers (average age approx 65 years) is at risk, with twice the level of stress than the general population. Despite their age, caring was a full-time job for 90 per cent of the older participants and physical care was required in 86 per cent of cases.
Karola Dillenburger, Senior Lecturer in Inclusion and Special Educational Needs, Graduate School of Education at Queen’s said: "This research takes into account older carers' experiences, whose greatest challenges (in 86 per cent) were the lack of respite for sons or daughters with disabilities, and dealing with their difficult behaviours.
"79 per cent of the participants did not have a future care plan for their son or daughter. The report recommends that an advocate should be available from birth, to people with disabilities and their families, to help coordinate appropriate networks of support. I would urge policy makers to carefully consider this report and its recommendations."
Caroline Kelly, a research participant who cares for her 31 year old son with a learning disability said: "This research records vividly all the despair and exhaustion we feel as older carers. It looks with heart-breaking honesty through our eyes, reflects the love we have for our children, the sacrifices we make in our lives and relationships, the broken promises from those who are supposed to provide the services and our nightmares about the future for our children. We want the policy makers to read every word of this report, because this is our reality."
Dr Una Lynch, CAP Research Manager at the Institute of Governance at Queen's said: "Dr Dillenburger’s study is a fine example of the CAP goal, to ensure that the voices of all older people, including the most isolated, are heard by policy makers and services providers. Research such as this provides a stark insight into the reality of older carer’s lives and a robust basis for future policy and service developments."
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