The Shadow Administrator: Australia's 2.65 Million Unpaid Carers Are at a Breaking Point

Australia has 2.65 million unpaid carers,[12] and they are doing more than just caring—they are running a "shadow administrative system." They are being forced to act as project managers, data archivists, and system navigators, all in an unpaid capacity.[1]

This isn't an accident. It's the direct result of a fragmented health, disability, and aged care system that outsources its most critical coordination tasks to its most vulnerable users. This report, based on an in-depth analysis of the carer experience, documents the crushing weight of this administrative burden and the clear, carer-defined needs for a path forward.

The Unpaid, Unseen Job Description

The role of an unpaid carer has evolved far beyond physical and emotional support. Data from Carers NSW shows this is a near-universal experience, with 91.5% of carers reporting they perform "administrative tasks".[11]

This unacknowledged "job" includes high-stakes, professional-level work:

• High-Stakes Medication Management: Carers are performing clinical-level tasks, such as keeping an up-to-date medication list (medicines reconciliation), managing repeat prescriptions, and actively monitoring for side effects, all with little to no formal training.[2]
• "Chasing Paper": Carers are responsible for "planning and coordinating healthcare."[1] This means "chasing" referrals from the GP to the specialist, calling to ensure they were received, attending the appointment, calling the specialist for the results, and then calling the GP to ensure the report was read.
• The "Single Source of Truth": In a system where records are scattered, the carer becomes the "walking electronic medical record."[3] At every new consultation, they are forced to recount a full, complex medical history with perfect accuracy, and often must correct errors in the information that was transferred.
• Navigating Two Systems: Carers are trapped in "administrative double-jeopardy," forced to navigate the clinical system (GPs, hospitals) and the separate, equally fragmented support system (NDIS, My Aged Care, Centrelink).[13], [14]

The True Cost of This Burden

This relentless administrative workload is a primary driver of the well-documented public health crisis in carer wellbeing.

The data is stark. The 2024 Carer Wellbeing Survey found that carers are more than twice as likely (57.7%) to have low levels of wellbeing compared to the average Australian.[5] A staggering 32.5% are experiencing high levels of psychological distress.[5]

This isn't just an inconvenience; it's a direct driver of burnout.[4] The administrative load is compounded by severe "financial toxicity." Carers face high direct costs for care and significant lost income.[16] This strain forces devastating choices: 57.0% of carers had to reduce household spending, and 49.5% had to cancel or delay their own specialist appointments.[5]

Most alarmingly, 33.1% of carers had to cancel, delay, or reduce appointments for the person they care for due to cost.[5] This creates a vicious cycle: a missed appointment creates a new information gap, which increases the patient's clinical risk, which in turn increases the carer's administrative and emotional burden.

This all-consuming role leads to a profound erosion of the carer's own health. More than half (52.5%) report being in "fair or poor health," and 40.3% are "often or always lonely."[5]

What Carers Actually Need (Hint: It's Not Another Website)

When you ask carers what they need, the answer is clear. They are overloaded with fragmented, unhelpful information, but starved of synthesized, actionable knowledge.[6]

The problem is not a lack of data, but a lack of synthesis. Sending a carer to another website only worsens the "information burden."

1. The Primary Need: A Human Navigator

The most consistently identified "need" is not for a tool, but for a person. Carers "overwhelmingly prefer a personalized approach."[7] They articulate a clear desire for a "care navigator" helper—a single, trusted individual who can provide one-on-one support to help them navigate the clinical and support system maze.[7], [8]

2. The Secondary Need: Tools That Actually Help

Where digital tools are concerned, carers need them to be "action-oriented," not "information-passive."

• Action-Oriented: A prime example is the MedAdvisor App's "Carer Mode," which directly reduces the workload by allowing a carer to "order medications, message the pharmacy, and set dose reminders."[9]
• A "Single Source of Truth": A secure, trusted, and functional My Health Record is critical. Its key purpose is to provide "Less need for you, as a carer, to remember key aspects of medical history and medications,"[17] a feature that directly addresses one of their greatest burdens.
• Accessible: A digital-only strategy will fail. Research shows older carers "have trouble with technology" and "abandon" online apps.[7] Any digital rollout must be paired with human-led digital literacy training and non-digital alternatives.[10]

3. The Foundational Need: Formal Recognition

Ultimately, no tool or service will work until the system stops treating carers as invisible. Lived experience data is saturated with carers feeling "devalued" and "excluded from treatment decisions."[15]

This lack of recognition is the root of the problem. The system holds carers responsible for patient safety but actively denies them the information and inclusion required to perform that role.

The most fundamental need is for a systemic shift: to formally identify carers in all records, to formally include them in care-planning decisions, and to formally grant them access to the information they need to manage their "shadow administrative" workload.[18]

Conclusion

Australia's unpaid carers are the human "interoperability layer" for a broken system. They are performing a critical, complex administrative job, and they are being burned out by it.

The solutions, as defined by carers themselves, are clear. They don't need more fragmentation. They need human-centric "care navigators" to guide them. They need smart, action-oriented tools that reduce their workload. And above all, they need the system to finally recognize them as the expert, essential partners in care they have always been.

Reference List

1. Carers Australia. Carers Australia Submission to the Productivity Commission Carer Leave Inquiry. Carers Australia. Published 2022. https://www.carersaustralia.com.au/wp-content/uploads/2022/09/Carers-Australia-Submission-to-the-Productivity-Commission-Carer-Leave-Inquiry.pdf
2. Carers Australia. Medicine safety. Carers Australia. Accessed November 7, 2025. https://www.carersaustralia.com.au/medicine-safety/medicine-safety/
3. Saragih M, See X, Teo W, et al. Implementing advanced therapies for spinal muscular atrophy and Duchenne muscular dystrophy: a qualitative study of barriers and facilitators. Front Pharmacol. 2024. https://pmc.ncbi.nlm.nih.gov/articles/PMC11074375/
4. Home Instead. What is Carers Burnout? Home Instead. Accessed November 7, 2025. https://www.homeinstead.co.uk/care/domiciliary/respite/carers-burnout/
5. Carers Australia. Caring for others and yourself: Carer Wellbeing Survey 2024 report. Carers Australia. Published 2024. https://www.carersaustralia.com.au/wp-content/uploads/2024/10/Final-CWS-2024-Report-compressed.pdf
6. Cushing A, Kerrigan P. Personal information management burden: A framework for describing nonwork personal information management in the context of inequality. Proc Assoc Inf Sci Technol. 2022. https://www.google.com/search?q=https://www.researchgate.net/publication/344321965_Caregivers_Information_Overload_and_Their_Personal_Health_Literacy
7. Roberts L, K B, L S, et al. 'Voices of unpaid carers': A qualitative study of their needs and experiences in accessing information and services in South Australia. Health Sci Rep. 2024;7(8):e2079. https://pmc.ncbi.nlm.nih.gov/articles/PMC11141225/
8. Submission 62. Inquiry into the Recognition of Unpaid Carers. Parliament of Australia. Published 2024. https://www.aph.gov.au/DocumentStore.ashx?id=c117d2c6-6504-46c0-b47d-80b4c9781c6b&subId=746439
9. Carers Australia. Making Your Medication Manageable. Carers Australia. Accessed November 7, 2025. https://www.carersaustralia.com.au/making-your-medication-manageable/
10. Carers Australia. Pre-Budget Submission 2022-23. Carers Australia. Published 2022. https://treasury.gov.au/sites/default/files/2022-03/258735_carers_australia.pdf
11. Carers NSW. Carers NSW 2024-25 Pre-Budget Submission. Carers NSW. Published 2024. https://www.carersnsw.org.au/uploads/main/Files/3.Resources/Policy-Research/Policy-Submissions/Carers-NSW-2024-25-Pre-Budget-Submission.pdf
12. Australian Institute of Health and Welfare. Informal carers. AIHW. Accessed November 7, 2025. https://www.aihw.gov.au/reports/australias-welfare/informal-carers
13. Malek N, Guthridge M, G-Mari E, et al. ‘Where’s the Support for Us?’: Exploring the Lived Experiences of Significant Others Who Care for People with Disability in Australia. Disabilities. 2024;4(4):706-718. https://www.mdpi.com/2673-7272/5/4/95
14. Kular, N. Family carers’ perspectives of managing activities of daily living. Bond University. Published 2019. https://research.bond.edu.au/files/32583781/Am_Family_carers_perspectives_of_managing_activities_of_daily_living.pdf
15. SANE Australia. Carer mental fatigue and burnout. SANE Australia. Accessed November 7, 2025. https://www.sane.org/information-and-resources/facts-and-guides/carer-mental-fatigue-and-burnout
16. Carers Australia. Annual Report 2020-21. Carers Australia. Published 2g. 2021. https://www.carersaustralia.com.au/wp-content/uploads/2021/11/CarersAustralia-Annual-Report-2020-21.pdf
17. Carers Australia. Digital Health Literacy. Carers Australia. Accessed November 7, 2025. https://www.carersaustralia.com.au/programs-projects/digital-health-literacy/
18. NHS England. Transforming primary care: Supporting the new DES for patients with complex needs. NHS England. Published 2014. https://assets.publishing.service.gov.uk/media/5a7512d740f0b6397f35d77e/Transforming_primary_care.pdf

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