Building recognition and support for unpaid carers

Unpaid carers play a vital role in Australia's health, aged care, disability, and social care sectors, as well as in the national economy. As the population ages and more people live with chronic conditions, the need for carers grows. Recent carer policy reforms in Australia show promise by emphasising stronger recognition for carers. In this paper, we urgently call for collective efforts to better recognise and support carers and outline key priority areas for action. 

Why does carers' recognition and support matter?

According to ABS data, there are three million carers in Australia, representing nearly 12% of the population, who provide everyday support to family members or friends with a physical or mental health problem, disability or who are aged and frail. Among these, 1.2 million are primary carers, predominantly female, who have an average age of 54. The contributions of carers to health, aged and social care systems are significant. It is estimated that the care provided by unpaid carers would bring $77.9 billion in annual cost savings in Australia. 

Carers persistently experience poor health and well-being compared to the general population. They are twice as likely to experience high psychological distress, three times more likely to feel lonely, and three times more likely to face financial hardship. Carers’ access to formal and informal support services, such as respite care, training courses and psychological services, remains challenging. 

Carers of older adults, people with terminal illnesses or those nearing the end of life encounter unique challenges that distinguish them from the general carer cohort. These include heightened care demands and around-the-clock support needs, complexity of managing medical requirements, more frequent interactions with healthcare professionals, and intense emotional strain from observing suffering. Carers can also be affected by uncertainty and death anxiety, affecting their wellbeing and impacting their ability to care. Anticipatory grief, bereavement and responsibilities relating to the legal and operational aspects of death will continue to impact the carer after death.

Carers policy reform in Australia

To address the complex issues faced by carers, the Australian federal led major policy reforms. The National Unpaid Carers Recognition Act has been reviewed, and a National Carers Strategy 2024-2034 along with an Action Plan for 2024-2027 has been developed. This is a positive step in identifying gaps and prioritising areas for advocacy and action. Placing more emphasis on underserved populations is a promising step toward promoting equity and inclusion. However, to support the translation of policies into practice, evidence-based interventions should be developed to deliver acceptable, timely and equitable models of care for diverse groups of carers with varying needs.   

A call for action

With an increasing demand for unpaid care, there is an urgent call for collective action to enable systems and services to be more proactive and responsive to carers. Failing to recognise and support carers will not only affect the people they care for but also the systems that rely on their care to manage demand. 

However, every action requires a thoughtful understanding of the broader context in which carers live, care, and interact. Systems and services are interrelated, and carers move across systems, vertically and/or horizontally. These include healthcare systems, palliative care services, aged and social care systems, disability services, workplaces, local governments, and community networks.

Therefore, we call for:

• A whole-system approach to ensure a seamless journey for carers across systems, points of transition and at intersections. Multi-sectoral collaboration at the policy and practice levels would lead to a shared understanding of the problems and facilitate sustainable and integrated solutions for system change. 
• An appropriate linked data system that enables capturing carers’ data, data access and data sharing. Such a system would prevent time-poor carers from repeating their stories and needs while ensuring data security and protecting the privacy and confidentiality of carers and the person they care for.
• Supporting healthcare professionals to be more proactive in recognising and supporting carers. Examples of actions include developing carer-centred healthcare frameworks; adopting evidence-based tools for health professionals to assess carer needs (separate from patients); developing referral pathways; and professional training, especially for general practitioners and nurses as gateways. Some tools have already been developed. These can be reviewed and adapted for wider use in different settings. 
• Increased community awareness of the contribution of carers and their needs. Community campaigns should be implemented in partnership and through different avenues. Appropriate modes of communication and multiple languages would ensure that various community groups are reached. This will also assist carers to self-identify, which is a first step in seeking the help they need at the right time. Community actions should go beyond solely raising awareness to empowering individuals as active citizens who bolster social capital. Local governments can play a key role in leading local actions and leveraging community resources.  
• Documentation and analysis of carers’ narratives and tracking their journeys. Carers' problems and access barriers are well-reported. Tracking carer journeys over time helps identify transition points, such as moving from community to primary care, aged care, disability services, and acute care, bottlenecks in their pathways, and how these gaps can be addressed. Carer advocacy organisations, in partnership with service providers, researchers and other interest-holders, can play a critical role in this area. 
• Finally, we call for greater investment in research and evaluation. Rigorous research, underpinned by implementation science frameworks, will assist in analysing, generating and mapping evidence to inform the development, implementation and evaluation of best-practice models. Examining existing national and international carer support programs will provide insights into their scope and factors that enable or hinder their success and sustainability. Participatory and codesign research approaches serve as valuable tools for engaging carers and other stakeholders — such as policymakers and practitioners — in meaningful ways. These approaches aim to improve research validity and impact. Strengthening research and evidence-based care models, of course, relies on stronger commitment from the government and research funding organisations.

These priority areas of action are aligned with the National Carers Strategy and Action Plan, and thus, support the translation of policy into action. 

Dr Sara Javanparast is a medical practitioner and Senior Research Fellow in the Research Centre for Palliative Care, Death and Dying, Flinders University. She has over 18 years of experience in primary health care and aged care research, and research implementation and translation.

Professor Jennifer Tieman is a Matthew Flinders Professor and Director of the Research Centre for Palliative Care, Death and Dying. She leads a series of nationally and internationally recognised palliative care programs which aim to build awareness and capability across the workforce and service providers within the health and aged care sectors.