National policy response to dementia

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 & Doyle 2014).

The first federal dementia policy initiative was launched in 1992 (the National Plan for Dementia Care 1992–97) 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 (World Health Organization 2017).

This webpage focuses on:

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 (Royal Commission 2019). Some of these essential services also receive federal government funding, for example through the Medicare Benefits Schedule or through specific programs and initiatives (e.g. Dementia Behaviour Management Advisory Service, Severe Behaviour Response Teams and the Specialist Dementia Care Program).

Box 15.1: The Royal Commission into Aged Care Quality and Safety

The Royal Commission into Aged Care Quality and Safety (Royal Commission) was set up in 2018 to look into issues related to the quality of residential and in-home aged care. The Royal Commission’s final report, Care, Dignity and Respect, was tabled in the Australian Parliament on 1 March 2021. This report included 148 wide-ranging recommendations for fundamental reform of the aged care system.

The Royal Commission identified 4 areas in need of immediate attention: food and nutrition; care and support for people living with dementia; elimination and reduction of restrictive practices; and palliative care (Royal Commission 2021).

Other recommendations specific to dementia from the final report, are:

  • Recommendation 15: establishing a comprehensive, clear and accessible post-diagnosis support pathway for people living with dementia, their carers and families
  • Recommendation 16: reviewing and publicly reporting on whether the number of Specialist Dementia Care Units established or planned to be established is sufficient to address need within the areas and populations they are designed to cover
  • Recommendation 19: reviewing of the Aged Care Quality Standards, including dementia care standards
  • Recommendation 45: improving the design of aged care accommodation, including dementia-friendly design
  • Recommendation 80: implementing mandatory dementia care training for workers engaged in residential aged care and in care at home (Royal Commission 2021).

Furthermore, the Royal Commission also recommended substantial improvements to aged care data and research, which are a promising source of information to close existing dementia data gaps. Recommendations include the creation of a National Aged Care Data Asset to monitor and report on: people accessing aged care, their needs and services used; the aged care workforce; financial and other characteristics of providers including quality of care measures (Royal Commission 2021).

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

In response to the final report of the Royal Commission, the Australian Government, through the 2021–22 Federal Budget, announced a $17.7 billion aged care reform package over 4 years. These measures are expected to deliver significant reform in aged care, providing care, dignity and respect to senior Australians.

As part of this reform, the government is investing over $229 million over 4 years to support people living with dementia and their carers. The investment 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 are able to access high-quality, dementia-informed aged care services. Key measures 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 dementia-specific health pathway program to be used by general practitioners (GPs) during consultation with patients.
  • Face-to-face 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 and there will be a specific 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 behavioural 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, 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 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.

In late 2021 the Australian Government will commence development of a new national dementia plan that will be informed by the 2019 Framework review and the Australian Government’s response to the recommendations of the Royal Commission. This work will occur in consultation with state and territory governments and other key stakeholders, including people living with dementia and their families, Dementia Australia, health professionals, aged care providers and researchers.

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.

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 & 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) (Royal Commission 2019a). 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 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 stream of this fund focuses on funding research aimed at improving the lives of ageing Australians. To date, $185 million had been budgeted to research grants under this stream over a 10-year period (between 2018–19 and 2028–29), with $17.5m available for 2020–21.
  • 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 Specialist Dementia Care Program. Further information on these programs is presented in Dementia support services and initiatives.
  • The Aged Care Centre for Growth and Translational Research (CGTR) is designed to address long-standing barriers to the development, evaluation and uptake of aged care workforce research. The CGTR focuses 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 recent investment of funding for a national dementia monitoring program and dementia data improvements and development will look to address these gaps over the next decade. 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

The COVID-19 pandemic has had an especially devastating impact on older Australians, including those with dementia. Through the National COVID-19 Aged Care Plan developed in January 2020, the Australian Government has made significant investment to support people through the pandemic. The plan has since been adapted to respond to outbreaks in residential aged care homes. As of 22 July 2021, 8.6% of residential aged care residents and staff members have had reported cases of COVID-19 (accounting for over 7 out of every 10 deaths due to COVID-19) (Department of Health 2021a).

In October 2020, the Royal Commission delivered a special report on COVID-19 in aged care and made the following recommendations to better prepare the aged care sector, its staff and people accessing services, for any future outbreaks:

  • funding aged care providers to ensure there is adequate staff to deal with external visitors and enable more meaningful visits to residential aged care homes
  • creating new Medicare Benefits Schedule (MBS) items to increase the provision of allied health and mental health services for people in residential aged care homes
  • publishing a national aged care plan for COVID-19 and establishing a national aged care advisory body
  • requiring aged care providers to appoint infection control officers and arrange for the deployment of accredited infection prevention and control experts (Royal Commission 2020).

The Australian Government accepted these recommendations with actions underway to address these recommendations (Department of Health 2020).

The Australian Government has also introduced a number of measures to assist in improving COVID-19 vaccination uptake and delivery among people living in residential aged care and aged care staff. This includes vaccination reporting requirements for residential and in-home aged care providers, as well as funding grants to support residential aged care employee vaccinations (Aged Care Quality and Safety Commission 2021).

As of 17 August 2021, 73% of Australians aged 50 and over and 84% aged 70 and over, had received the first dose of the COVID-19 vaccine. Around 40% aged 50 and over and 54% aged 70 and over, had received their second dose and were considered fully vaccinated (Department of Health 2021b).