The experiences of ageing parent carers and the reasons behind their decision to continue to care for adult children with intellectual disability at home

Mrs Wendy Simpson1

1Edith Cowan University, Joondalup, Australia

Australian research has found that there is an increasing number of ageing parent carers continuing to provide care for their adult child with intellectual disability at home.  Since the late 1980s, when institutions began closing, many families made the choice to provide care at home, which may become a concern when they age and ask the question “who will care when I am gone?” The purpose of this study was to explore the reasons behind the decision families made, what barriers they experienced, and what plans they had in place for future accommodation for their adult child with intellectual disability.

Qualitative research methods explored the lived experiences of families through semi-structured interviews conducted with ageing parent carers who continue to provide care for their adult child with intellectual disability.

The findings from this study suggest that the degree of disability of their adult child and the absence of informal support networks had no bearing on the decision for these families to continue to provide care.

The most prevalent barrier the parents in this study experienced was the perceived poor quality of disability accommodation services, largely influenced by previous experiences in respite care.

Recommendations focused on improving the first and subsequent experiences in respite care by implementing strategies to improve the quality of care, perceived or real, provided in disability accommodation. Recommendations were also made to introduce support for families to plan for the future through further education for service providers.


Wendy Simpson completed her Masters research in 2016, and is currently continuing to study the lived experiences of disability through her PhD research. Wendy works as a Research and Evaluation Coordinator in a not-for-profit community organisation in WA. Wendy’s background is within the aged care and disability sector.

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