Dementia in Australia: delivering new insights about people living with dementia

Contributing to our strategic goal of ‘leaders in health and welfare data’

Our understanding of the prevalence of dementia in Australia and the experiences of people living with dementia, or caring for someone with dementia, has long been limited by substantial data gaps in health and aged care data collections. This includes inconsistencies in how information on dementia diagnoses is captured. Australia’s population is ageing, and dementia is an increasing and leading cause of burden of disease, ill health and death in our community. It is imperative that we improve the quality and breadth of information on dementia available to health and aged care policymakers, researchers and the public.

The Department of Health and Aged Care funded the AIHW to establish the National Centre for Monitoring Dementia (NCMD) and to produce timely, policy-relevant dementia statistics. This project also includes a range of data improvement activities. In September 2021, former minister for senior Australians and aged care services, the Hon Richard Colbeck, Chief Executive Officer of Dementia Australia, Maree McCabe, and dementia advocate Natalie Ive, launched the Dementia in Australia report.

This report provides the first comprehensive picture of dementia in Australia in a decade. It includes statistics on prevalence, burden of disease, deaths and spending, and poignant personal stories. It uses linked data from the National Integrated Health Services Information Analysis Asset (NIHSI AA) to report on the use of health and aged care services including, for the first time, insights into the use of general practitioners and specialist services by people living with dementia.

Linked data have transformed our capacity to report on people living with dementia and understand how they use health and aged care services. We can now report from the patient perspective rather than being limited to documenting episodes of care.

Since the release of Dementia in Australia, NCMD staff have used a variety of linked data sources to develop analytical approaches to filling data gaps and to shed new light on the impact of dementia. For example, using the NIHSI AA, we have demonstrated that Medicare Benefits Schedule claims data, which contain no dementia diagnosis Australian Institute of Health and Welfare Annual report 2021–22 19 Our performance information, can be used to identify people with probable early dementia. This uses a key national data asset for health condition monitoring in a way never previously possible and contributes to our understanding of dementia prevalence in Australia.

However, there is still much to be done to improve the breadth and quality of data available for dementia monitoring. In future work, the NCMD will develop and enact a national dementia data improvement plan and continue to report on, and explore, policy and research priorities for dementia.