At home until the end? What carers shared about navigating in-home aged care at the end of life
An article written by Dr Kristin Bindley, Postdoctoral Research Fellow, The University of Technology Sydney & Accredited Mental Health Social Worker, AASW
Most older Australians say they want to stay at home as long as possible, ideally right through the end of life. But as many health and aged care providers know, wanting to stay at home and being able to stay at home are very different prospects for many older people and their families. Alongside interdisciplinary care and help provided by family and others, aged care packages have the potential to support care at home at the end of life. Yet we know little about how these packages meet the needs of people during this time.
In our research [1], we sought out Australian carers supporting an older person with a life-limiting illness and receiving a package of in-home aged care. Drawing on interviews with 14 current or bereaved carers, we explored the ways in which in-home aged care works and where challenges remain, when someone is nearing the end of life at home. Most older people receiving care had a dementia diagnosis, and at the time of our study, most had accessed care through the Home Care Packages Program (HCPP), which has since transitioned to the new Support at Home Program that commenced on 1 November 2025. Although the Australian system of in-home care is evolving, these findings remain relevant, with insights pertinent to future evaluation of these reforms, especially the new End-of-Life Pathway.
A consistent theme was the enormous amount of ‘navigational work’ carers described. Even after the challenging initial process of accessing a package, this work continued: coordinating different services, querying billing, and chasing information. Findings underscore something that clinicians and workers often see, but can underestimate, the ongoing administrative burden of managing in-home aged care is in itself a form of care labour that needs to be more thoroughly validated and supported. Especially considering that many face this work on top of the known emotional and physical challenges that accompany caring at the end of life.
Carers in this study also described the way that long-standing, well-known systemic issues impacted caring at end of life, for instance, long waits for assessments and higher-level packages, even when needs were clearly escalating. Several noted that by the time a greater level of care became available, it was no longer feasible to stay at home due to further deterioration or needing to move into residential care. Many felt care workers weren’t adequately equipped with specialised knowledge and skills to meet complex and challenging needs related to a life-limiting illness. Only a few described any contact with palliative care providers, and not at home. Repeatedly, our participants told us that meaningful relationships of care with workers and providers matter, involving in-depth knowledge of the older person and consistency that builds trust and reduces anxiety. Yet many were also aware that issues such as staffing shortages, high turnover and care models continue to undermine such relationships.
Uniquely, this study speaks to experiences of packaged care specifically in the context of end of life. Findings resonate with what we already know and are still struggling to address, despite increasing diagnoses of dementia alongside other life-limiting illnesses, and rapidly growing demand for home care. The potential for in-home aged care to support care at home at the end of life is contingent on timely access, care that is tailored to varied life-limiting illnesses and often intensive end of life needs, and workforce capacity related to end-of-life care. Maintaining a clear focus on the extent to which current and future forms of packaged care are adequately resourced to meet the complex realities of end of life at home remains crucial.
For more detail, see our article: At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness
Reference
- Bindley K, Ivynian S, Rawlings-Way O, Parker D. At home until the end? A qualitative study of experiences of in-home aged care programs in the context of caring for older adults with a life-limiting illness. Palliat Care Soc Pract. 2026;20.
Author
Dr Kristin Bindley
Postdoctoral Research Fellow, The University of Technology Sydney
Accredited Mental Health Social Worker, AASW