Finally, a chance for you to get directly involved with dementia research

While there are plenty of studies and technological advances when it comes to dementia prevention, diagnosis, treatment, care and cure, there’s currently no systematic way for people living with the cognitive condition to get involved in potentially life-changing research.

Recruiting participants for dementia-related studies is expensive and time-consuming for researchers and can cause trials to be delayed significantly when the right participants aren’t found. In turn this can cost even more money, limit the effectiveness and scope of research and delay findings that have the potential to significantly change existing policies and the lives of those affected by dementia.

Now though, in a first for Australia, researchers from the University of Sydney have launched StepUp for Dementia Research – an engagement service that connects participants to an array of studies that have the potential to help those living with dementia have a better quality of life, change the way the disease is diagnosed and discover new treatments, or even a cure.

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“StepUp for Dementia Research is an online, postal and telephone service that connects people who are interested in volunteering for dementia research with researchers recruiting for their studies,” Professor Yun-Hee Jeon – program director of StepUp for Dementia Research, tells Starts at 60.

“It’s a similar concept to an online dating service in the way that it matches people with or without dementia with research studies based on their personal information or characteristics like age, where they live or whether they have a particular diagnosis and so on.”

In some cases, participants will be suggested for studies that may have a direct benefit on their health, such as drug trials and intervention studies which are designed to improve physiological wellbeing. In most cases though, the studies give participants a chance to be involved in trials that could improve existing services for dementia patients in the wider community and even form better policies around supporting those affected by dementia.

“There are people in the community who may have relatives or friends with dementia and they want to do something about it,” Jeon says.

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Current types of research that participants could be matched with include genetic and brain imaging studies that identify risk factors, biomarkers and possible drug targets for dementia; Intervention studies where diet, socialising and exercise can be used to assess outcomes; surveys to figure out best treatments to improve quality of life; and other studies that assess dementia risk in those without a diagnosis. Participants will be matched with the best study based on the information they provide.

The website went live in March and, while volunteers are yet to be paired with studies, it’s been important for the service to accumulate enough participants in the database before the matching commences in mid-August.

Researchers hope the service will save costs, keep trials to schedule and find enough relevant participants for studies, with Jeon explaining: “I’ve seen trials delayed for over a year, mainly because they can’t recruit participants in time.

“Having this type of service isn’t going to solve all the problems associated with recruitment, but having this pool of people that feel they’d be interested in dementia research will improve recruitment efficiency and that has potential to save millions of dollars and fast-track dementia research.”

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The other aim is to reduce the stigma surrounding dementia – the second leading cause of death in Australia – and increase the public understanding of what the condition is and the impact research can really have on the 342,000 Australians living with dementia.

“This is something no one has ever done in terms of improving recruitment deficiency and research in Australia,” Jeon says. “We’re funded by the Federal Government Department of Health to pilot this. We’d love to see more people coming to us and signing up for StepUp for Dementia Research.”

Volunteers will be asked simple questions about themselves when signing up including their location, date of birth and brief medical history, but adding extra information such as the medication you take or any symptoms you’ve experienced could improve the chance of being put forward for a study.

While people living with dementia will be valuable, the service also requires carers, healthy people and those with cognitive impairment to sign up. Anyone over 18 can express their interest, while researchers are also currently being invited to register their studies.

For more information or to register visit stepupfordementiaresearch.org.au or call 1800-7837-123.

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Have you ever participated in a trial or research for dementia? Do you know someone who would be an ideal candidate?