Sydney Dementia Network
A network of 320 dementia researchers, clinicians, people living with dementia and carers collaboratively working towards improving treatments, care and support for people with dementia within NSW
The Sydney Dementia Network, launched in 2018, seeks to unite dementia researchers, clinicians, carers and patients to accelerate the focus on dementia research within NSW. Led by Prof Lee-Fay Low, Prof Sharon Naismith, Associate Professor John Kwok, with early and mid -career researchers Dr Ramon Landin-Romero, Dr Jacki Wesson, Dr Simone Simonetti. The Network works to ensure improved outcomes for people living with dementia and carers through advocacy and knowledge translation, while providing opportunities for researchers across NSW in prevention, treatment and care of dementia.
The network involves collaborations with key researchers, clinicians, health organisations and government bodies to coordinate, share findings from and extend current research efforts in the future of dementia in NSW and Australia.
What does the SDN represent?
The Sydney Dementia Network brings the largest multidisciplinary group of Australia’s leading dementia academics and Sydney Health Partners, an NHMRC accredited Advanced Health Research and Translation Centre. Sydney Health Partners encompasses three Local Health Districts (LHDs) providing care for 2.7 million people. This network allows us to rapidly translate research and make an impact on more than 10% of the Australian population. We bring a strong and cohesive track record of working collaboratively to lead national efforts in the rapid translation of research innovations into health care. Our partnership is successful not only because of our excellent collaboration but also because of our scale.
The Sydney Dementia Network has established effective care pathways between our research diagnostic and translational centres and clinician-researchers in Sydney LHD (Concord Hospital, Prof Louise Waite; Royal Prince Alfred Hospital, A/Prof Rebekah Ahmed), Northern Sydney LHD (Royal North Shore Hospital, Dr Helen Wu, Prof Sarah Hilmer; Hornsby Hospital, Prof Sue Kurrle), Western Sydney LHD (Westmead Hospital, Prof Clement Loy; Blacktown Hospital Prof Richard Lindley), Southern NSW LHD (Moruya Hospital, Prof Sue Kurrle).
In addition to the LHDs, the Brain and Mind Centre comprises leading dementia experts in the large majority of dementias with weekly clinics in frontotemporal dementia (Prof Olivier Piguet), Dementia with Lewy Bodies (Prof Simon Lewis), Vascular Dementia, Alzheimer’s disease and Healthy Brain Ageing (Prof Sharon Naismith, Prof Sue Kurrle), and leading neurodegenerative diseases associated with dementia including Huntington’s disease (Prof Clement Loy), Parkinson’s disease (Prof Simon Lewis) motor neuron disease (Prof Matthew Kiernan) and multiple sclerosis (Prof Michael Barnett). With weekly clinics across the Centre, we are already established as a leading Centre of Excellence in dementia diagnosis and management.
More about the SDN
- StepUp for Dementia Research (led by Prof Yun-Hee Jeon) facilitates the public engagement and participation in dementia research: a national infrastructure that connects the public, people with dementia and carers with researchers delivering studies into dementia prevention, diagnosis, treatment and care. Initially funded by the Federal Government Department of Health, this young service has already provided research participation opportunity to over 1000 volunteers and supported 35 research teams from 16 institutions across Australia contributing to fast-tracking dementia research in Australia.
- The Australian Dementia Network (ADNeT) Memory Clinic (MC) Initiative: Prof Naismith leads the MC Initiative of ADNeT, which aims to unite and improve standards of 55 MCs across Australia. We published guidelines for Australian Memory Clinics, working closely with clinicians, people with lived experience and carers, Dementia Australia and other stakeholders such as the Department of Health. This work shows that our MCs have long wait-times (>2-4 months), ‘service’ is limited to diagnosis, post-diagnostic support is rarely provided and there are regional/geographical disparities in care provision.
- The Interdisciplinary Home-based Reablement Program (I-HARP) (led by Yun-Hee Jeon). In order for people to live well with their dementia, key services and best care practices are needed that recognise and maximise their ability to engage in their daily, physical, social and community activities. I-HARP was developed to address these issues with a dementia-specific, person-centred, time limited, home-based, interdisciplinary rehabilitation package. Data shows that I-HARP enhances the functioning of older people with dementia, mobility, independence, and both wellbeing and confidence that enables their ability to live at home for longer. Funded by the NHMRC (2017-21) this world-first implementation trial, with international collaborators from UK and the US, is being conducted in 4 hospitals and 2 aged care services in Sydney to test the cost-effectiveness of the program.
- The Care of Older Persons in their Environment (COPE) program has been implemented and evaluated in Australia (led by Professor Lindy Clemson). The program is a structured occupational therapy and nursing intervention for people with dementia and their caregivers living at home that is designed to assist people with dementia and their carers to independently manage everyday activities. The program, derived from the US COPE program, is proven to reduce dependency, increase engagement in the person with dementia and improve carer wellbeing.
- Forward with Dementia: addresses a major gap in Australian dementia care by providing information, resources and training on communication of dementia diagnosis and the evidence for and access to post-diagnostic support. The project is a five-country collaboration, co-led by Prof Lee-Fay Low
- Aged Care Providers: Sue Kurrle works closely with not-for-profit aged care provider HammondCare and their Dementia Centre as a Research Lead, assisting with developing evidence based practice in both community and residential aged care for people with dementia.
The Sydney Dementia Network Lived Experience Expert Advisory Panel (LEEAP) was established in 2020 by Dr Claire O’Callaghan, Prof Muireann Irish and Prof Lee-Fay Low. LEEAP involves people with lived experience of dementia, including caregivers or family members, and people with dementia. The panel meets 3-4 times a year to provide dementia researchers with advice on research priorities, design, interpretation and other issues.
The goal of LEEAP is to promote engagement between dementia researchers and people with lived experience of dementia, so that research can be informed by the needs of those directly affected by dementia.
We invite dementia researchers to contact us if they are interested in engaging with the panel. Likewise, we invite people with lived experience of dementia to contact us if they are interested in being involved by emailing us.
- One of three NHMRC Centres of Research Excellence in Dementia (led by Prof Naismith)
- The only Australian based Aligning Science Across Parkinson’s initiative (Prof Deniz Kirik, Prof Carolyn Sue and Prof Glenda Halliday)
- MRFF Australian Parkinson’s Mission (led by Prof Simon Lewis and Prof Glenda Halliday)
- MRFF Amytrophic Lateral Sclerosis Trials Australia (led by Prof Matthew Kiernan)
- MRFF Trial for premanifest Huntington gene expansion carriers (led by Prof Clement Loy)
- Prof Glenda Halliday’s, MJFF Robert A. Pritzker Prize for Leadership in Parkinson's Research .
- One of three NHMRC European Union Joint Programme in Neurodegenerative Disease Research for Multinational projects on Personalised Medicine for Neurodegenerative Diseases (Profs Halliday and Piguet)
- One of 6/10 NHMRC Implementing Dementia Risk Reduction grant (Prof Sharon Naismith).
- One of two Sydney sites chosen for the new EISAI clinical trial for preclinical Alzheimer’s (Westmead, Prof Loy and Naismith)
- A range of other NHMRC funding including: One of seven NHMRC Ideas grants in Dementia; Nine NHMRC Standard Project grants in Dementia; One of the NHMRC New Investigator Project grants in Dementia; Five NHMRC Dementia Research Leadership Fellows; Fifteen NHMRC-ARC Dementia Research fellows; Three NHMRC Research Fellows in Dementia; Two NHMRC Leadership Investigator grants in Dementia; Four NHMRC Emerging Leadership Investigator grants in Dementia; One MRFF Next generation Clinical Researchers in Dementia; One of the six NHMRC Practitioner Fellows in Dementia; Three of four NHMRC Clinical Development Fellows in Dementia; Two of three NHMRC Early Career Fellows in Dementia; Two of six NHMRC CJ Martin Biomedical Fellows in Dementia; One of three NHMRC Health Professional Research Fellows in Dementia; Six NHMRC Postgraduate Scholarships in Dementia and three grants with the Alzheimer’s Association.
- NIH program and RO1 funding for Alzheimer and Lewy body dementias as Australian sites (Dr Eleanor Drummond and Prof Glenda Halliday)
- US Alzheimer’s Discovery Drug Foundation Funding for Digital Phenotyping (Prof Naismith)
- Spencer, Blues and Appenzeller Philanthropic gifts for Dementia Research (~$2.5M).
- Direct research funding support