Dementia is a major health issue in Australia. It is not a single disease – there are many types of dementia with symptoms in common, and these are caused by a range of conditions affecting brain function. Dementia is most common among older people; ‘younger onset dementia’ refers to dementia that begins before the age of 65. While exact numbers are not known, the Australian Institute of Health and Welfare (AIHW) estimated that around 27,800 Australians had younger onset dementia in 2021.

The needs and care requirements of people with younger onset dementia, their families and informal carers are often different from those of older people. A diagnosis may occur at an age when the demands of family and work are at a peak, placing a severe strain on family and carer dynamics and finances. People with younger onset dementia often retain good physical health, which can affect the appropriateness of dementia services that are targeted at older people.

Linked data provide a new opportunity to present a more comprehensive picture of people with younger onset dementia. This report presents findings from 2 new multi-source enduring linked data sets, each of which focuses on different information:

1. The Multi-Agency Data Integration Project (MADIP) includes information on Pharmaceutical Benefits Scheme (PBS) medicines, sociodemographic characteristics in the 2016 Census, and income support payments received through Centrelink.
2. The National Integrated Health Services Information Analysis Asset (NIHSI AA) contains information on PBS medicines, health services, residential aged care (RAC) and mortality.