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Younger onset dementia: new insights using linked data

I’m very pleased to announce my team’s latest study providing new insights into younger onset dementia using linked data from the National Integrated Health Services Information Analysis Asset (NIHSI-AA) and the Multi-Agency Data Integration Project (MADIP).

Linked data provides an opportunity to present a comprehensive picture of people with younger onset dementia over time – who they are, what health services they use and when they need to enter residential aged care.

The needs of people with younger onset dementia, and their 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.

People at a relatively early stage of younger onset dementia were identified using Pharmaceutical Benefit Scheme (PBS) claims for drugs used to treat Alzheimer’s disease. Over a 6-year period (2011 to 2017), the linked data were used to describe social characteristics from the 2016 Census and patterns of Centrelink payments (using the MADIP); and health service use, residential aged care service use and causes of death (using the NIHSI AA). The analysis included an exploration of differences in health service use and outcomes by people who subsequently entered permanent residential aged care, and those who did not.

The report found:

·      People with younger onset dementia are culturally and linguistically diverse: 41% of the younger onset dementia cohort were born overseas and 21% were born in a non-English speaking country.

·      People with younger onset dementia often need income support, assistance with day-to-day activities while living at home and may under-use respite residential aged care

·      Hospital stays are a common trigger for entry to permanent residential aged care and long hospital stays suggest challenges in timely access to appropriate supported accommodation for people with younger onset dementia

·      One-quarter of the younger onset dementia cohort were aged under 65 when they first entered permanent residential aged care

·      Differences in access to GPs and specialists may affect people’s ability to stay at home rather than move to permanent care. However, without more detailed data on the reasons for GP and specialist attendances (dementia-related or otherwise), it is difficult to deduce potential areas of inequity.

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Given most dementia research focuses on older people, there is a need for better evidence to inform policy and service responses to support younger people with dementia, including work responding to the Royal Commission into Aged Care Quality and Safety. Learn more about how younger onset dementia has impacted the lives of two Australians, Carrie* and Lucy*, through our ‘Australian stories about living with dementia’ series with Dementia Australia. These stories provide greater understanding of dementia and show the diverse experiences of people living with dementia and their carers.

The use of linked data in today’s report highlights its importance in providing a more complete picture of dementia in Australia, and will assist us to deliver a cutting edge dementia monitoring program over the longer term as well as produce targeted, policy relevant reports on specific health and welfare issues for people with dementia.

Today’s study builds on our current body of work, including a recent feasibility study on predicting early dementia using Medicare claims and our main report Dementia in Australia, to help fill known data gaps.

To see more of the work we are doing on dementia, please explore some of the recent reports produced by my unit at the links below:

Dementia in Australia

Dementia deaths during the COVID-19 pandemic in Australia

Dementia data gaps & opportunities

Explore AIHW dementia data

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