Dementia is a substantial heath, aged care and societal challenge. Between 386,000 and 472,000 Australians are estimated to be living with dementia and this will increase as the population ages.

Accurate and timely evidence is crucial to inform how we respond to this challenge.

Australia was one of the first countries to pioneer the development of comprehensive dementia policy initiatives at a national level back in 1992. However, a national database was lacking to underpin the policy and service planning for the rising impact of dementia on the health of Australians and our health and aged care systems.

As part of the Australian Government’s response to what continues to be regarded as a significant health challenge, the Australian Institute of Health and Welfare (AIHW) developed the first comprehensive data analyses of the state of Dementia in Australia.

‘Better data about the experiences of Australians living with dementia and the people who care for them are essential and can be used to improve policies and support services for those who need it the most, and to assist in our future planning,’ said Dementia Australia CEO Maree McCabe AM.

'For Dementia Australia, up-to-date data is invaluable. It ensures that we have a correct view of the scale of dementia in Australia, and certainly gives us a better sense of the real impact it is having on so many Australians across all backgrounds.’

The comprehensiveness of Dementia in Australia and the quality of the institute’s data sources and analysts led to the establishment of the National Centre for Monitoring Dementia (NCMD) in September 2021.

The institute’s reporting, including Dementia data gaps and opportunities in 2020, identified significant data gaps that limit monitoring and reporting on dementia in Australia and ways in which they can be systematically and strategically addressed.

The recent investment of funding in the national dementia monitoring program and dementia data improvements and developments will be used to address these gaps over the next decade, to improve future planning for dementia programs and services.

The newly established National Centre for Monitoring Dementia has work already underway at the institute, including projects on the health and aged care interface for people with dementia, behavioural and psychological symptoms of dementia, examining the impact of COVID-19 pandemic on people with dementia, and developing a national dementia data improvement plan. A key focus of the Centre’s work will be linking administrative data to improve dementia data and analysing existing linked data.

Dementia advocate, Natalie Ive, spoke about her personal experience with having younger onset dementia and the necessity for accurate and timely statistics.

‘The institute’s report is important so that I am counted and included in the statistics provided. These statistics provide a crucial platform in the hope that it will inform policies within the health, disability, and aged care sectors. Furthermore, I feel that it encompasses an overview of the lived experience of people impacted by dementia.’

The Australian Government has welcomed the institute’s capacity to consolidate information from multiple national data sources to provide a more complete picture of dementia in Australia.