Similar to popular dating apps, the StepUp for Dementia Research service will draw on characteristics such as age, location and diagnosis to match volunteers with researchers carrying out studies in dementia prevention, diagnosis, treatment, care and cure.
Dementia is the second highest cause of death in Australia and while funding for research is a priority for governments, researchers say one of their biggest challenges is finding and keeping research participants.
(I do it) for my kids, and my grandkids, because I have the familial type of dementia. I give as much as I can now living with dementia, to make it easier for our future generations living with dementia.
“Dementia research in Australia is being severely impacted by difficulties and delays in finding the right people to take part in trials,” said Professor Yun-Hee Jeon, Susan and Isaac Wakil Professor of Healthy Ageing at the University of Sydney who leads the StepUp for Dementia Research initiative.
“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.”
Professor Jeon said their preliminary review of the Australian and New Zealand Clinical Trials Registry found that of terminated dementia clinical trials, three in five ceased due to recruitment difficulties.
“In my own experience, I have seen trials delayed by over a year and budgets blown out due to an inability to find the right research participants. StepUp for Dementia Research is set to change this,” said Professor Jeon of the University’s Faculty of Medicine and Health and Charles Perkins Centre.
“Importantly, it will also empower people with dementia, their families, carers and the general public to make informed decisions and to have a voice in shaping the future of dementia research.”
StepUp for Dementia Research ambassador and former national president of Dementia Australia, Ita Buttrose said: “StepUp is an excellent initiative that will help reduce the stigma around a diagnosis of dementia, while encouraging people who have been touched by it to take the opportunity to create a better future for others experiencing dementia.”
StepUp for Dementia Research is based on a model already up and running in the UK, which has attracted over 40,000 volunteers in four years.
The Australian program is run by the University of Sydney and was developed in partnership with researchers from the University of Exeter and University College London. It is funded by the Australian Government Department of Health.
Vice-Chancellor and Principal Dr Michael Spence said, “The University of Sydney is proud to be working with our international collaborators to pioneer this initiative in Australia. It has so much potential for shaping how we conduct health and medical research, and for influencing the way the public views scientific research.”
People over 18 – both with and without dementia - can register their interest in participating in research via the secure StepUp for Dementia Research website. They will then be connected with any studies they may be eligible for. A telephone (1800-7837-123) and postal service are also available.
Anyone across Australia can register, however, the rollout of research studies will commence with NSW and WA.
Researchers can register their interest with StepUp for Dementia Research; a free service specifically designed to help researchers meet their recruitment needs. It can be used by approved researchers working in universities and in healthcare across Australia to list their ethically approved studies and match participants.