Large-scale data on aged care, disability and cognitive decline to shape agenda on ageing

For the first time, large-scale data on how Australians use aged care, along with insights into the impacts of disabilities and cognitive decline, will be available through the release of data from the 45 and Up Study.

The Sax Institute’s 45 and Up Study – Australia’s largest ongoing study on health and ageing – is releasing new survey data from 17,000 participants in May, with tens of thousands more older Australians being surveyed in 2024 and 2025.

The survey, which was completed by Australians aged 60 and older, will feed into powerful evidence platforms for issues facing our ageing population, said CEO of the Sax Institute Dr Martin McNamara.

“By 2050, millions more Australians will need aged care or support for a disability. And the number of people with dementia will have tripled to more than 1.5 million. These critical and interconnected issues are important national challenges.”

Researchers and policymakers are invited to partner with the 45 and Up Study to establish new data platforms to improve understanding of the challenges and drive new solutions.

“We’re at the beginning of an exciting new wave of data, so now is the time to get involved,” said Dr McNamara. “We can marshal crucial evidence that can guide efforts to improve health and wellbeing through better-targeted policies and services.”

To find out more about working with the 45 and Up Study, contact Dr Greer Dawson, Deputy Director of Research and Partnerships, at 45andUp.Research@saxinstitute.org.au

The Sax Institute’s 45 and Up Study offers person-centred data, which sets it apart from other data sources. “We can see how someone’s experience of a disability or condition, or their experience of a service like aged care, affects their wellbeing and quality of life,” said Dr McNamara.

Participants answered more than 100 questions on their physical and mental health, on the health services they use, their lifestyle and general wellbeing.

For the first time, the survey asked extensive questions about participant’s use of community aged care, including what services were received at home, out-of-pockets costs for aged care services and any barriers to accessing care.

“These new questions, along with existing ones on participants’ mental health, loneliness and life satisfaction, all point to how well the aged care sector is performing, and the challenges of transitioning between different care systems,” said Dr McNamara.

With the recent Royal Commission into Aged Care Quality and Safety ushering in new reforms, the 45 and Up Study has the potential to measure the impact of some of these changes.

The impact of disabilities and cognitive decline on older Australians are also being explored for the first time in this survey. There are new questions on participants’ disabilities and the services received for it, including funding from the National Disability Insurance Scheme (NDIS). Participants are also asked about memory loss and if they’ve had a diagnosis of cognitive impairment, dementia or Alzheimer’s.

The 45 and Up Study has been running since 2005, with more than a quarter of a million Australians aged 45 and older initially recruited.

Participants in the Study consented to have their survey responses linked to a large range of datasets, including Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS), hospital administrative data, cancer registries, immunisation data (AIR) and mortality data. Study data are de-identified and protected with high-level security measures and ethics requirements.

“There is no other data source in Australia with such rich information about large numbers of participants. The 45 and Up Study can now provide powerful insights on life trajectories and health care use across two decades,” said Dr McNamara.

Research using the Study has already informed policy on a broad range of issues including tobacco control, cancer screening, vaccinations and chronic disease management, and has helped plan health services in Australia and across the globe.

Tens of thousands of older Australians are expected to complete a survey by the end of 2025, with new data from the surveys being released in 2024, 2025 and 2026.

To find out more about working with the 45 and Up Study, contact Dr Greer Dawson, Deputy Director of Research and Partnerships, at 45andUp.Research@saxinstitute.org.au