Australia’s efforts to improve dementia diagnosis and treatment took a major step forward this week as the Australian Dementia Network (ADNeT) Registry released its 2024 Annual Report. The findings, presented during a national webinar hosted by Monash University’s School of Public Health and Preventive Medicine, highlight how real-world data is reshaping clinical practice, research, and policy for nearly half a million Australians living with dementia.
The Registry, first established as part of the broader ADNeT initiative, is now regarded as one of the country’s most valuable tools for tracking the quality of dementia care. It provides clinicians with benchmark reports, informs policymakers, and serves as a foundation for introducing new treatments such as disease-modifying therapies for Alzheimer’s disease.
A Year of Rapid Growth
The 2024 Annual Report revealed significant expansion. Over the past 12 months, the Registry recruited 2,619 new participants, bringing its total to 6,898 individuals drawn from 74 clinical sites across all states and territories. Importantly, the Registry captures data from both metropolitan and regional areas, ensuring that insights reflect the lived experiences of Australians in diverse settings.
This breadth of participation allows the Registry to highlight disparities in diagnosis and care. People from culturally and linguistically diverse (CALD) backgrounds and those in remote regions often face late diagnoses or limited access to specialist care. By collecting and analyzing their data, ADNeT ensures that care models are adapted to better meet the needs of these groups.
Introducing Disease-Modifying Therapies
One of the year’s most notable developments was the expansion of the Registry to support Australia’s rollout of the first disease-modifying therapies for Alzheimer’s disease. In May 2025, the Therapeutic Goods Administration (TGA) approved donanemab, a monoclonal antibody therapy shown to slow cognitive decline in early Alzheimer’s patients.
The Registry is now playing a key role in monitoring how donanemab is prescribed, how patients respond, and whether it improves quality of life in real-world conditions. This is essential, as randomized clinical trials often exclude older, frailer patients or those with multiple chronic conditions—groups that represent a large proportion of dementia cases in practice.
To track these outcomes, the Registry was awarded a prestigious Alzheimer’s Association (US) grant to establish a Real-World Data Platform. This will enable long-term surveillance of new therapies, ensuring safety while also facilitating international research collaborations.
Driving Quality Through Benchmark Reports
Beyond supporting new treatments, the Registry has become a cornerstone of quality improvement. Last year, 130 benchmark reports were delivered to participating clinics. These reports allow healthcare providers to compare their diagnostic and treatment patterns against national averages, identifying gaps and areas for improvement.
For example, a clinic might discover it diagnoses dementia later than the national average, or that it under-utilizes imaging tests. Equipped with this feedback, clinicians can adapt their practices, leading to faster diagnosis and better patient care.
Capturing Risk Factors
The Registry’s reach now extends beyond clinical outcomes. In 2024, it introduced new data elements to track modifiable risk factors for dementia, including smoking and hearing impairment. This move reflects growing evidence that up to 40 percent of dementia cases may be preventable through lifestyle and health interventions.
For clinicians, this data provides actionable opportunities. If a patient presents with mild cognitive impairment (MCI) and has untreated hearing loss, the Registry’s insights could encourage referrals for hearing aids—an intervention shown to delay cognitive decline. Similarly, smoking cessation programs may be flagged as integral parts of care.
A National Collaboration
The Registry is part of the larger Australian Dementia Network (ADNeT), a national partnership of 21 clinical and academic institutions, including Monash University, the University of Melbourne, and UNSW’s Centre for Healthy Brain Ageing (CHeBA). Its governance is supported by the Australian Government Department of Health, Disability and Ageing under the National Clinical Quality Registry Program.
This collaboration ensures that the Registry’s data is not siloed but integrated into broader research and policy strategies. By aligning with hospitals, primary care providers, and research institutes, ADNeT provides a single, trusted source of truth for dementia care in Australia.
Supporting Clinicians, Patients, and Policymakers
The Registry’s data has direct implications at multiple levels:
- For clinicians, it provides evidence-based guidelines and comparative feedback to refine diagnosis and treatment.
- For patients and families, it offers reassurance that care is aligned with national best practice and that their experiences are shaping future treatments.
- For policymakers, it supplies real-world evidence to guide resource allocation, funding, and public health strategies.
This three-tiered impact is especially important as Australia faces the reality of a rapidly ageing population. Dementia is now the second leading cause of death in Australia, and the leading cause of death among women. By 2050, the number of Australians living with dementia is projected to double, placing enormous pressure on the health system.
Looking Ahead
The release of the 2024 Annual Report underscores the Registry’s growing influence at a time of major change in dementia treatment. The introduction of disease-modifying therapies represents the most significant clinical advance in decades, but their rollout comes with challenges: ensuring equitable access, monitoring long-term effects, and integrating them into routine care.
The ADNeT Registry is positioned to meet these challenges. Its real-world data will help determine not just whether these therapies work, but for whom, under what conditions, and at what cost. These answers will shape Australia’s approach to dementia care for decades to come.
The Role of Monash University
Monash University’s leadership has been pivotal. With the largest medical faculty in Australia and a strong presence in clinical registries, Monash has provided the infrastructure, expertise, and governance needed to run such a large-scale program. Its collaboration with partner universities ensures that ADNeT is not just a national initiative but also linked to global research efforts.
A Future of Data-Driven Dementia Care
The message from this year’s Annual Report is clear: data saves lives. By harnessing the power of real-world information, the ADNeT Registry is turning fragmented clinical experiences into a unified resource that drives progress.
The Registry’s continued growth—both in participant numbers and scope—signals a new era in dementia care. Patients, clinicians, and policymakers now have a tool that not only measures the current state of practice but also guides its future direction.
As Australia embraces novel therapies and focuses more heavily on prevention, the ADNeT Registry will remain a critical partner. Its insights ensure that scientific advances are translated into practical improvements in the day-to-day lives of Australians living with dementia and mild cognitive impairment.
In a health system often challenged by complexity and fragmentation, the Registry stands out as a model of integration, collaboration, and innovation. For a condition as devastating as dementia, that combination may prove to be one of the most powerful treatments of all.
