Australian Dementia Network Registry informs clinical practice, shapes policy and supports research: 2023 annual report
The Australian Dementia Network (ADNeT) Registry released its 2023 Annual Report at a public webinar attended by people living with dementia and their families, clinicians, researchers, and policy makers.
The ADNeT Registry captures data from a diverse group of Australians newly diagnosed with dementia or mild cognitive impairment (MCI), including those from regional and remote settings, and culturally and linguistically diverse backgrounds.
Managed by Monash University, and supported by the University of Melbourne, it provides data-driven insights that inform clinical practice, shape policy, and support research to improve access to high-quality care.
Key findings in the report include:
· 1,915 new participants recruited, bringing the total to 4,280 participants recruited across 60 contributing sites across all states in Australia
· 63% of these new participants were diagnosed with dementia and 37% with MCI. Of those diagnosed with dementia, the median age at diagnosis was 79 years, with 52% involving Alzheimer’s disease
In 2023, the ADNeT Registry incorporated new data elements on key potentially modifiable risk factors for dementia, such as smoking and hearing impairment. New data were also collected on the duration of symptoms, the presence of neuropsychiatric symptoms and on initial post-diagnostic care. A history of smoking and hearing impairment were each present in approximately one in five registry participants. Additionally,
· 56% of participants living with dementia and 41% of participants living with MCI had cognitive symptoms for more than two years at their initial appointment
· 52% of participants living with dementia and 40% of participants living with MCI had at least one neuropsychiatric symptom at the time of the diagnosis; mood symptoms were the most common
· 56% of participants living with dementia were referred to a post-diagnostic program at the time of a dementia diagnosis
The ADNeT Director, Professor Christopher Rowe, expressed pride in the achievements reflected in the 2023 Annual Report and highlighted the registry’s importance. “The ADNeT Registry is far more than a data collection tool—it is instrumental in enhancing the quality of dementia care across Australia. The insights generated by the registry are translating into real-world benefits for patients, families, and healthcare providers, driving meaningful improvements in clinical practice, research, and policy,” said Professor Rowe.
Importantly, the ADNeT Registry’s continued development includes the living experience of those diagnosed and their families and carers.
ADNeT Registry’s Clinical Lead and Steering Committee Co-Chair Dr Stephanie Ward reiterated the impact of the registry, saying, “Dementia affects so many people in our community, whether it be people living with this diagnosis or their family members. The ADNeT Registry provides clinicians with vital data on their clinical practices. At a broader level these data provide important insights into diagnostic and management practices across the country.”
With new developments in dementia prevention, diagnosis and treatment on the horizon, the ADNeT Registry is poised to play an even more pivotal role in combating the impact of dementia in Australia, by assessing, monitoring and guiding the adoption of new treatments and diagnostic tools as they become available.
As the registry expands, its role in driving healthcare policy, advancing medical knowledge and informing health care providers will be vital, to ensure the best outcomes for Australians seeking clinical care for dementia and MCI and for those who will receive a diagnosis in the future.