The initiative, led by Professor Yun-Hee Jeon, Susan and Isaac Wakil Professor of Health Ageing at the University of Sydney and Sydney Nursing School, aims to connect up dementia researchers with participants – filling an essential gap in the process of dementia research.
The program uses key information about participants - including age, location and diagnosis - to match volunteers to research trials currently studying dementia prevention, diagnosis, treatment and cure.
The event marked the kick-off for StepUp for Dementia Research, with the NSW Minister for Health Brad Hazzard declaring the program officially open on Tuesday 11 June.
Also in attendance were Vice-Chancellor and Principal Dr Michael Spence and Ita Buttrose OBE in her capacity as an ambassador for the program, as well as former NSW Premier Nick Greiner.
Professor Jeon spoke to how common dementia is – both in Australia and around the world - and the growing needs of researchers in this space. She hopes this program can bring about not only more efficient and effective research but also "sustainable and systematic change in attitudes" towards dementia.
Every day, 250 people in Australia are diagnosed with dementia, and a further 1.5 million Australians are involved in the care of someone with dementia. Despite its prevalence, there is still a stigma around dementia with many sufferers and their families reluctant to share their experiences with the disease.
By actively engaging members of the public with research, the hope is that not only will researchers see more trials through to completion, but that the public's awareness of the research process, and its power, can be increased.
"The stigma around dementia means it can be hard to recruit participants, particularly those in the early stages who are likely to benefit most from our research but are often reluctant to talk about their symptoms or diagnosis,” said Professor Jeon.
Dr Spence and Mr Hazzard also spoke, similarly echoing the need for more research in the dementia space – and most importantly – letting researchers conduct the studies that will make a difference.
The initiative has now entered the first call-out phase for participants, with both researchers and members of the public able to register their interest.
It is expected that volunteer-study matching will take place by August. Learn more about StepUp for Dementia Research.