Published: September 2026. Next review: 2031.
Dementia has a major impact on individuals, families and communities across Australia, and is a significant and growing health issue.
Why dementia identification matters
In 2026, it is estimated that nearly 459,000 Australians are living with dementia. This number is expected to exceed one million people over the next 35 years (AIHW 2026).
A dementia diagnosis is often the beginning of a complex journey involving primary care, specialist services, hospitals, community services and aged care. Understanding when and where dementia is identified can help health services:
- support earlier recognition and diagnosis
- improve coordination across care settings
- strengthen support for carers and families
- reduce avoidable hospital presentations and admissions
- improve equity of access to dementia services across NSW.
Using linked primary and acute care data
We analysed linked healthcare data from the Lumos Data Asset to better understand:
- where dementia is identified
- how people move through the health system
- the opportunities to improve care.
At the time of the analysis, Lumos contained data from 7.38 million people and 885 general practices (approximately 40% of all NSW general practices).
We produced 3 reports to give the most comprehensive NSW analysis to date of dementia care pathways using linked primary and acute care data.
They demonstrate the value of linked data for understanding dementia prevalence, service use and care pathways. They also outline how expanding linked datasets and stronger diagnosis recording can support better planning, more coordinated care and improved outcomes for people living with dementia and their carers.
Key findings
Identifying people with dementia
- Around 1.8% of people in Lumos data were identified with dementia, equivalent to about 134,000 people out of 7.3 million.
- On any given day, about one in 10 people in NSW public and private hospitals were identified with dementia.
Diagnosis and care
- Nearly 66% of people had their dementia diagnosis first recorded in hospital, with almost 90% admitted for another reason.
- Around 11% of people with dementia were treated in hospital for delirium in the year before their first recorded diagnosis. Around 8% were treated in hospital or presented to an emergency department for depression. These findings suggest opportunities for earlier recognition of cognitive decline.
- Only 4% of people with dementia were living in residential care before diagnosis, rising to almost one-third (31%) within 5 years.
- There was variation in health service use for people with dementia. Some people had frequent contact with general practice, hospital or outpatient services, while others had little or no recorded service use each year.
- Compared with people whose first dementia diagnosis was recorded in hospital, those whose diagnosis was first recorded in general practice had more general practitioner appointments and fewer hospital attendances over time.
Gaps in dementia data
- Dementia is likely under-reported in general practice. Almost 7 out of 10 people with a dementia diagnosis recorded in hospital did not have a diagnosis recorded in general practice.
- A lack of linked private specialist data, limits insights into dementia diagnosis pathways and patterns of care across the whole health system.
- Data for Aboriginal and Torres Strait Islander peoples are currently unavailable in the Lumos Data Asset.
Bringing together data and lived experience
Data alone cannot fully explain the experiences of people living with dementia and those who support them.
To complement the quantitative analysis, a group of carers and clinicians from across NSW shared their lived and professional experiences from a range of roles and care settings. Participants provided insights into:
- diagnosis pathways
- barriers to accessing services
- challenges navigating the health system
- limitations of administrative data
- opportunities to improve dementia care and support.
These perspectives were used to sense-check the analysis, contextualise the findings, and provide insights that may not be visible in routinely collected healthcare data.
We can highlight the importance of the primary care setting and support diagnosis through regular GPs. The data actually gives me some hope. When I look at it, the outcomes associated with GPs appear to be better.
Download the reports
The Summary Report (PDF 769.8 KB) provides a concise overview of the project, its key findings and highlights potential future directions.
The Project Report (PDF 2.0 MB) provides a short methodology, presents detailed analysis of the findings, includes insights from clinicians and carers, and explores implications and future directions.
The Methodology Report (PDF 1.8 MB) outlines the data sources, methods, clinician and carer consultations, and analyses that underpin the findings. It includes an exploratory assessment of the quality and representativeness of dementia diagnosis data within the Lumos dataset relative to statewide data assets.
Acknowledgements
The Australian Institute of Health and Welfare commissioned us to lead this initiative in collaboration with the System Information and Analytics Branch of the NSW Ministry of Health. Together, we combined clinical expertise, lived experience, health system knowledge, and robust data analysis to inform evidence-based decision-making and drive improvements in healthcare across NSW.
The Lumos program is a partnership of the NSW Ministry of Health and NSW Primary Health Networks and is possible through the participation of general practices across NSW.
We thank the clinicians and carers who generously contributed their time, expertise and lived experience in consultations.
References
- AIHW (Australian Institute of Health and Welfare) (2026) Dementia in Australia, AIHW, Australian Government, accessed 3 September 2026.