Dementia in Australia

Australia was one of the first countries to design comprehensive dementia-specific policy initiatives at a national level, as a response to the rising challenges of an expanding and ageing population and advocacy from groups such as the then Alzheimer’s Association of Australia (Hunter and Doyle 2014).

The first federal dementia policy initiative was launched in 1992 (the National Plan for Dementia Care 1992–1997) and succeeding policy initiatives have cemented dementia as a key priority in the national aged care agenda. Dementia has also been increasingly recognised as a national health priority requiring a focus on preventive strategies, high-quality health and social care, and investments in medical research (Hunter & Doyle 2014; Department of Health 2015). In 2017, the World Health Organization developed The Global action plan on the public health response to dementia 2017-2025 to encourage a concerted international effort to address the global impacts of dementia. The global action plan was adopted by Australia and other Member States (WHO 2017).

This webpage focuses on:

• The Royal Commission into Aged Care Quality and Safety, which concluded in early 2021 (see Box 16.1), including dementia-focused recommendations and the Australian Government’s response to these recommendations.
• Recent national policies and developments in response to the challenges posed by dementia.
• The Australian Government’s response to the COVID-19 pandemic and the impact that the pandemic had on people living with dementia. 

While this page focuses on the national policy response to dementia by the federal government, it is acknowledged that governments at all levels develop and deliver dementia-specific policies and services. State and territory governments also fund (in full or part) essential services like: memory clinics; geriatric evaluations and aged care visiting services; older adult mental health services; hospital to residential aged care transition services; and support for people experiencing behavioural and psychological symptoms of dementia (Mond 2019). Some of these essential services also receive federal government funding, for example through the Medicare Benefits Schedule or through specific programs and initiatives (for example, Dementia Behaviour Management Advisory Service, Severe Behaviour Response Teams and the Specialist Dementia Care Program).

The Australian Government’s response to the Royal Commission into Aged Care Quality and Safety

A range of changes are being made to aged care in response to the final report of the Royal Commission into Aged Care Quality and Safety (‘the Aged Care Royal Commission’). These changes are expected to deliver significant reform in aged care, providing care, dignity and respect to senior Australians.

Dementia-specific changes will support people living with dementia and their carers at every stage from diagnosis through to residential aged care. Together this will ensure people living with dementia are connected with the support they need post-diagnosis, are enabled to remain in their home for longer, and able to access high quality, dementia informed aged care services.

Key initiatives include:

• Improved early intervention assistance: When a person is first diagnosed with dementia there will be more support to help them access the services they need to maintain their health, wellbeing and independence. This includes a localised dementia-specific health pathway to be used by general practitioners (GPs) during consultation with patients and development of consumer resources outlining dementia specific services and supports available within their region.
• More help to navigate the aged care system: When a person living with dementia needs aged care services, they will be supported by improved linkages between services, such as My Aged Care and the National Dementia Helpline and there will be a strengthened focus on dementia in aged care assessment.
• More staff trained in dementia care: An uplift in dementia-specific workforce measures means that people living with dementia will receive better, more targeted care when accessing aged care services.
• Improved respite experience for people living with dementia: This includes efforts to expand dementia-friendly respite care models, engage a national provider to prepare respite care plans for people living with dementia and provide training to respite care providers to implement the plans.
• Improvements in capacity and quality of dementia care: People living with dementia and their carers will feel more confident accessing aged care services due to improvements in aged care regulation. These improvements extend to services to enhance positive approaches to behaviours and psychological symptoms of dementia, further reducing the reliance on restrictive practices.
• More support for carers to maintain their caring role: Additional carer-focused psychological supports, including innovative early intervention activities and regular follow up, will help informal carers to continue caring for a person living with dementia, delaying their entry to residential aged care.

The reform also includes funding to improve dementia data collection and understanding and develop new National Design Standards for residential aged care, incorporating dementia-friendly design. A more detailed description on the Australian Government’s response to the final report can be found on the Australian Government Department of Health website.

The National Framework for Action on Dementia

The National Framework for Action on Dementia 2015–2019 (‘the Framework’) was developed under the Australian Health Ministers’ Advisory Council to set high-level priorities of dementia care, guide the development and implementation of plans and policies, including specific measurable actions in order to reduce the risk of dementia, and improve outcomes for people with dementia and their carers (Department of Health 2015). A review of the Framework was undertaken in 2019 and finalised in early 2020. The review was conducted in order to assist development of a future national dementia strategy. Engagement on the development of this strategy was put on hold during 2020 due to COVID-19 and the re-prioritisation of activities managed through the National Cabinet structures.

The Australian Government commenced development of the new National Dementia Action Plan (‘the Plan’) in 2021 with state and territory governments, which will be informed by the 2019 Framework review. The Plan will span 10-years and include specific actions that promote a collaborative national approach to drive improvements for people living with dementia, their carers and families throughout Australia.

The Plan forms part of the Commonwealth Government’s response to the Aged Care Royal Commission and contributes to Australia’s international obligations as a member state to the World Health Organization’s Global action plan on the public health response to dementia 2017-2025. This work is occuring in consultation with state and territory governments and other key stakeholders, including people living with dementia and their carers and families, Dementia Australia, health professionals, aged care providers and researchers.

The Australian Government is working to finalise the plan before release in early 2024.

The Aged Care Diversity Framework

In 2017 the Australian Government also launched the Aged Care Diversity Framework and associated action plans to address the needs of older Australians from diverse backgrounds, including those with cognitive impairment and dementia. The Diversity Framework provides a mechanism for government, aged care providers, peak bodies and representative groups, service users, and their families and carers, to ensure diversity is embedded in the design and delivery of aged care services.

The delivery of safe and inclusive services to people with diverse needs and life experiences is built into the Aged Care Quality Standards. Diversity is embedded throughout the standards and underpinned by Standard 1 to value the identity, culture and diversity of each aged care recipient and to deliver culturally safe care and services.

In February 2019, four Action Plans designed to address the specific needs and challenges faced by diverse groups in the community were launched under the Aged Care Diversity Framework for:

• First Nations people
• older people from Culturally and Linguistically Diverse Communities
• people who identify as Lesbian, Gay, Bisexual, Trans and Gender Diverse, Intersex, Queer or other (LGBTIQ+)
• actions common to all diverse older people, in recognition of the many commonalities within and between diverse groups.

These plans assist aged care providers to identify actions they could take to deliver more inclusive and culturally appropriate services for their residents and clients. They acknowledge that there is no ‘one-size-fits-all’ approach to diversity, and that each aged care provider will be starting from a different place and operating in a different context.

Dementia research

Australian dementia researchers funded by the Australian Government through the National Health and Medical Research Council (NHMRC) have a renowned reputation for producing international-leading work (Hunter and Doyle 2014). Australian research has high potential to positively impact Australians with dementia, particularly when research is collaborative and conducted on a large-scale (Moira Clay Consulting 2021).

Starting in 2014, the government funded a 5-year $200 million dementia research expansion coordinated by the then NHMRC National Institute for Dementia Research (NNIDR) (Mond 2019). While allocation of the funding for the NNIDR concluded in 2019, the NHMRC still offers dedicated dementia-specific research funding opportunities (NHMRC 2021).

The NHMRC has also awarded funding to the Australian Dementia Network (ADNeT) – a network of scientists and researchers across a number of institutions. ADNeT aims to: establish Australia’s first dementia clinical quality registry to monitor, report and improve clinical care for people with dementia; establish a collaborative network of memory clinics and develop best practice guidelines for dementia diagnosis treatment and management; and establish screening sites for people with dementia who are suitable for participation in clinical trials. 

The government also funds a broad range of research and innovation projects on emerging priorities in dementia:

• The Medical Research Future Fund (MRFF) is a $20 billion long-term investment by the government that aims to support health and medical research and innovation. The Dementia, Ageing and Aged Care Mission will invest $185 million over 10 years under the MRFF to improve outcomes for people living with dementia and older Australians. The Mission will support older people to maintain their health and quality of life as they age, live independently for longer, and access quality care when they need it. 
• The Dementia and Aged Care Services Fund provides funding for multiple dementia-related services and initiatives such as the National Dementia Support Program, the Dementia Training Program and the Dementia Behaviour Management Advisory Service. Further information on these programs is presented in Dementia support services and initiatives.
• Aged Care Research and Industry Innovation Australia is designed to address long-standing barriers to the development, evaluation and uptake of aged care workforce research. They focus on the development of innovation to improve workforce capability and the development of assistive technologies to enable care recipients to maintain independence for longer. Funding of $34m was announced over 4 years, starting in 2021–22.

There are still persistent gaps in national data that limit monitoring and reporting on dementia in Australia and planning for dementia programs and services. The National Centre for Monitoring Dementia (NCMD), located at the Australian Institute for Health and Welfare (AIHW) was established in 2021 and is undertaking routine monitoring of dementia in Australia, addressing existing data gaps and informing specific Government policy on the needs for Australians living with dementia. The NCMD currently provides biannual updates to the Dementia in Australia web report, annual updates to the Dementia in Australia: Summary report and further research into Dementia data gaps and opportunities.

For more information on current dementia data gaps, and ways in which these gaps can be systematically and strategically addressed, see the 2020 AIHW report: Dementia data gaps and opportunities.

The impact of COVID-19

Although the emergency phase of the pandemic has passed, COVID-19 pandemic continues to impact older Australians, including those with dementia. The Australian Government continues to provide support to all Australians to prevent and manage the impact of COVID-19. On 12 December 2022, the Minister for Health and Aged Care, the Hon Mark Butler MP announced the key COVID-19 supports that will be available for 2023 and released the new National COVID-19 Health Management Plan (the National Plan) which outlines a suite of interconnecting, whole of system measures designed to manage COVID-19 into the future.

The National Plan includes the National Statement of Expectations on COVID-19 management in Aged Care Settings (the National Statement) which provides guidance to aged care providers and services (residential, group and care-at-home settings) on their responsibilities for preparing and responding to the impact of COVID-19.