Health status and coping strategies among older parent-carers of adults with intellectual disabilities in an Australian sample.
Older carers say they feel okay yet shoulder stress alone, so services must reach first instead of waiting for a call.
01Research in Context
What this study did
Llewellyn et al. (2010) mailed a health survey to older Australian parents who still care for an adult son or daughter with intellectual disability.
They asked about physical and mental health, how caring felt, and what the parents did when stress rose.
Most replies came from mums and dads aged 55–80 who had been carers for decades.
What they found
The parents said their bodies felt about the same as other people their age.
Mental health told a different story: carers aged 55–64 scored worse than the general public, while carers over 65 looked average.
When trouble hit, almost everyone relied on themselves first; formal help sat on the shelf until a crisis came.
How this fits with other research
Hogg (1997) warned that ageing carers are the hidden backbone of support; Gwynnyth’s numbers now prove that backbone still stands—but creaks under self-reliance.
Heald et al. (2020) tracked older adults with ID who had cancer and found they saw specialists half as often as everyone else; taken together, the two studies show the same pattern—families wait, services stay quiet.
Amaral et al. (2017) report that adults with ID die almost 20 years sooner than the general public; Gwynnyth’s carers saying “we feel fine” may hide the very risks that end lives early.
The trio of papers does not clash; each zooms in on a different step where the system fails to reach out.
Why it matters
If you serve adults with ID, do not trust a calm carer voice on the phone. Schedule yearly health chats, offer respite vouchers, and add carers to your routine outreach list. A quick check-in can catch the depression that carers admit only on a survey and can link them to medical care their adult child might never request alone.
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02At a glance
03Original abstract
BACKGROUND: Older parent-carers in Australia are the subject of increasing policy and practice attention due to concerns about their ongoing ability to care in the light of their own ageing and the ageing of their adult son or daughter. This paper examines health status and the coping strategies of a group of older Australian parents caring for an adult son or daughter with intellectual disabilities. METHOD: Health status using the SF-12 (Ware, Snow, Kosinski, & Gandek, 1993), caring stress using the CADI (Nolan, Grant, & Keady, 1998), and coping strategies using the CAMI (Nolan et al., 1998) were assessed in 64 older parent-carers of adults with intellectual disabilities. RESULTS: The self-reported health status of this sample of older parent-carers did not differ significantly from Australian population norms, with one exception. That is, the younger parent-carers in the sample (55-64 years) reported significantly poorer mental health. Better health was associated with having a partner, a larger and close support network of family, friends and neighbours, and a lower care-load. Overall, the study participants identified both satisfaction as well as stress associated with caring, a finding that runs counter to the common perception that being a carer is overwhelmingly burdensome. Common sources of stress were feeling helpless or not in control, and poor professional support. Analysis of older parent-carers coping strategies suggests that self-reliance, whether by choice or necessity, was the norm. CONCLUSIONS: The health status of older parent-carers may present less cause for concern than anecdotal reports suggest. That said, the strong self-reliance particularly of the older carers presents a challenge to service providers seeking to engage those whose situation appears to warrant support from the service system.
Research in developmental disabilities, 2010 · doi:10.1016/j.ridd.2010.08.003