A new service is helping connect people to research projects in ageing and dementia, to shape the future of what healthy ageing looks like in Australia.
From quick surveys to drug trials and everything in between, the service helps researchers recruit into studies and helps volunteers access tailored opportunities that interest them, providing a chance to ‘give back’.
Professor Yun-Hee Jeon says Australia’s rapidly ageing population can’t be ignored and research is the key to improving quality of life, and the quality of aged and dementia care services.
“By 2060, around one-fifth of Australia’s population will be 65 or over,” says Prof. Jeon, Susan and Isaac Wakil professor of healthy ageing at the University of Sydney and director of StepUp for Ageing Research.
“For Australia to cater to this shift we need better services, better treatments and the facilities and infrastructure to support people to age well – especially for the majority of Australians who would like to stay in their homes.”
StepUp for Ageing Research builds on the successful StepUp for Dementia Research launched in 2019. The service has enlisted close to 1700 volunteers, 26 universities and institutes, 220 researchers and successfully fed participants into more than 50 completed research projects, with another 50 studies currently recruiting through the service.
StepUp ambassador Dame Quentin Bryce says active engagement of older people and their families in research is essential to keep them front and centre in health policy development and service delivery.
“Healthy ageing is about older people becoming and remaining healthy. StepUp for Ageing Research will enable the voices of older people, families and communities to be heard and to be included,” she says.
But unfortunately, research is costly and one of the significant costs is recruitment.
Numerous research studies in ageing encounter problems because they can’t get the required number of participants to sign on, and stay on.
One large multinational Alzheimer’s trial predicted a recruitment period of 18 months but took three years to finalise recruitment.
“These recruitment delays are not only costly, they also slow the pace at which discoveries and better ways of doing things can be implemented,” says Prof. Jeon.
He says dementia, aged care and ageing-related research is a particularly difficult area to recruit for as many older people often keep to themselves or can be difficult to reach.
“But on the flip side, many people who are ageing often want to give back and make a meaningful contribution to society – they just don’t know where to start.
“StepUp for Ageing Research aims to bridge this gap and make it easy for the public to connect with researchers.”
The platform was developed in collaboration with the UK’s Join Dementia Research team at University College London and University of Exeter, and technology partner Thoughtworks Australia, with initial funding from the Australian government.
We need better services, better treatments and the facilities and infrastructure to support people to age well.
Who is StepUp for Ageing Research for?
Anyone 18 and over who resides in Australia can register to be involved online, via phone or post. The service is looking to recruit all adults, including the young, older people, those with dementia or cognitive decline, family, friends and carers. Being able to speak English is not a requirement and many studies use translators as research needs to represent all cultures and ethnic backgrounds.
How does it work?
Once you have registered your details at StepUp for Ageing Research, the service checks to see if you match any studies. If so, it will send you detailed information on the study and you then decide if you’d like to take part. By registering for the service, you are not committing to research projects.
What people are saying
Bobby Redman, who lives with dementia, says she loves being involved with StepUp for Research as it allows her to be involved with research that could help her retain functioning and potentially even one day find a cure for dementia.
“It gives me purpose and makes me feel that I can make a difference,” she says.
“So far, I have been linked to more than a dozen research projects covering many different perspectives, including activities to reduce the risk of further cognitive decline, rehabilitation, impact on social skills and the use of technology.
“It is so easy to connect to researchers through StepUp – once registered on the website, emails come through to tell me that I have been matched and I then have the option of deciding whether I want to be involved. There is no pressure, just great opportunities.”
A note on privacy
Protecting people’s data and privacy is a priority for StepUp for Research. The platform complies with the University of Sydney’s cybersecurity policies and ethics protocols.
This article is published with the permission of the University of Sydney.
Have you ever volunteered for a research project? Do you think it’s important to help researchers? Why not share your thoughts in the comments section below?
I have not previously been involved in a research project as a subject, but would like to participate in this one. I am 81 years of age, am healthy and reasonably “with it” mentally, and am reasonably well educated (I have a PhD).
I am interested in Dementia and cognitive decline with age.