The Australian Dementia Network (ADNeT) Registry, the first registry in Australia that measures the quality of clinical care provided at the time of diagnosis of dementia or mild cognitive impairment (MCI), published its 2022 report today. This second annual report’s key findings include:
- 2369 persons registered from 55 clinics across every state in Australia, with 27% clinics located in regional areas
- Nearly 40% of persons in the Registry were born outside Australia
- 37% of persons registered waited more than 3 months from referral to appointment at a dementia and cognition clinical service
- Two thirds (68%) of persons registered were diagnosed with dementia and one third (32%) with MCI· Of persons diagnosed with dementia, over three quarters (76%) involve Alzheimer’s disease. The median age at diagnosis was 79 years , more than half (54%) were women and 32% were driving. More than a quarter (27%) lived alone at the time of diagnosis, with this group potentially more vulnerable to increased risk of hospitalisation or entry into residential aged care.
In 2023, dementia became the leading cause of disease burden in Australians aged 65 and over and remains the second leading cause of death overall. Over 400,000 Australians are estimated to be living with dementia and nearly as many are engaged in caregiving activities. The ADNeT Registry unites clinical services involved in dementia and MCI diagnosis in a concerted effort to monitor and continuously improve the quality of care.
The ADNeT Registry, managed by Monash University, is well placed to measure the real-world outcomes of promising new disease-modifying therapies. We are entering a new era of dementia prevention, diagnosis, management and treatment. Recent breakthroughs in disease modifying drugs, such as lecanemab and donanemab, show slowing of cognitive and functional decline and removal of toxic amyloid beta protein from the brain. ADNeT researchers are using novel blood tests to detect and diagnose dementia easier and more accurately.
ADNeT Director, Professor Chris Rowe, said, “This is an exciting time for dementia diagnosis and treatment. Newly approved disease-modifying drugs, in combination with new blood tests for Alzheimer’s disease, give great hope that with early and accurate diagnosis we will be able to slow cognitive decline and reduce the prevalence of dementia.”
The Australia-wide ADNeT Registry represents the diversity of Australians impacted by dementia, including those in regional and remote settings, Aboriginal and Torres Strait Islanders and those from culturally and linguistically diverse backgrounds. People with lived experience of dementia and MCI, as well as their carers, have been vital in the ADNeT Registry’s continued development.
Gwenda Darling has a diagnosis of younger onset frontotemporal dementia and is a member of the ADNeT Registry Steering Committee. She said, “Being a part of the Steering Committee allowed me to feel heard and valued. Following a dementia diagnosis, many become invisible and fear becoming just another statistic. The ADNeT Registry Steering Committee always showed genuine respect and interest and valued input from me as a person with lived experience in the community.”
Dr Stephanie Ward, the ADNeT Registry Clinical Lead and practicing geriatrician said, “The ADNeT Registry continues to provide clinicians with valuable, benchmarked data, and with measures of patient and carer experiences and well-being. This information is extremely important to clinical services in helping to drive improvements”.
Now and into the future, the ADNeT Registry is an invaluable source of data to drive healthcare policy, advance medical knowledge, inform healthcare providers and ensure that Australians get the best and most equitable clinical care and outcomes when seeking diagnosis and treatment for dementia and MCI.
You can view a summary of the report findings here
Dr Stephanie Ward is available for interviews.
MEDIA CONTACT: Kasey Wallis- ADNeT Registry Program Manager
| E: adnet.registry@monash.edu
About
The Australian Dementia Network is a partnership of leading dementia researchers from across Australia and led by the University of Melbourne. The Australian Dementia Network Registry is managed by Monash University. More information about the ADNeT Registry can be accessed on the ADNeT Registry website
https://www.australiandementianetwork.org.au/initiatives/clinical-quality-registry/
BIO
DR STEPHANIE WARD
ADNeT Registry Clinical Lead and Steering Committee Co-Chair
Dr Stephanie Ward BMed FRACP MPH is a Senior Research Fellow at UNSW’s Centre of Healthy Brain Ageing (CHeBA), adjunct Senior Research Fellow at Monash University, and a geriatrician (specialist doctor for older people) experienced in the diagnosis and care of persons living with dementia and cognitive impairment in a variety of settings.