What is it like to take part in dementia research?

We spoke to Dementia Advocate Dr Ron Sinclair OAM about his vast experience contributing to research, including his advice to others that everyone has a right to be heard.

Ron’s 20 years of experience in research

Dementia Advocate Dr Ron Sinclair OAM has been volunteering to take part in research projects for almost 20 years.

But don’t tell him he’s a “research participant” because to Ron, the contribution he and other research volunteers make is far deeper and more meaningful than just “participation”.

Ron, who cared for his wife Diana until she passed away with dementia in 2006, has been involved in dozens of research projects focused on improving the lives of people living with dementia, their family and carers.

Ron is a researcher himself in the field of biosecurity, and in 2016 received an Order of Australia Medal for his contributions to environmental management as well as his work to improve the lives of people living with dementia.

“Obviously research participants play an incredibly important role in advancing science, but in my view, people living with dementia and their carers need to be so much more than just participating in research,” Ron said.

“The insight provided by people living with dementia is invaluable and I think every dementia research project should include meaningful and active involvement of people with lived experience of dementia.”

Ron’s advice for people interested in volunteering

“The first thing to consider is what commitment of time the project requires. Some projects can last for three to five years, while other projects may just involve doing a single survey,” Ron said.

“Another important thing to remember is that as a carer or person living with dementia, you are the expert on that experience. Don’t be afraid to ask a professor have they considered this or that because– your perspective is valid and important, and you have a right to be heard.”

Ron’s advice for researchers

“Feedback and communication is vital. You can offer to pay people, but for many people, a simple acknowledgment and thanks is even more valuable. I’ve worked with researchers who have included me as a secondary author on academic papers which is another wonderful way to acknowledge the work of volunteers,” Ron said.

“Ultimately it’s a partnership between volunteer and researchers, and like all partnerships, it works best when there is open, honest and constructive communication between both parties.”

What has changed in the last 20 years in the research space?

“More and more researchers are bringing community members in for real involvement which is fantastic to see. I’ve worked with so many wonderful researchers over the years. Those that do it the best are the ones that work hard to establish a mutually respectful relationship with volunteers, especially at the time the project is being planned," Ron said.

“We’re seeing some good progress at the moment, particularly because of the work of Dementia Australia.”

One way that Dementia Australia is working to support both volunteers and researchers is by providing training and support for people in the Dementia Advocates Program who want to be involved in research at the design and advisory level.

Dementia Australia also recently launched Half the Story( 4.7 MB), a guide co-authored by people impacted by dementia for organisations and researchers to engage in meaningful consultation with people living with dementia, their families and carers.

Half the Story offers information, tips and strategies for inclusive consultation which seeks out, affirms and ratifies the voices of people impacted by dementia.

If you are interested in learning more about volunteering to be part of a research project, visit the Dementia Australia Research Foundation website where you will find a list of research projects currently seeking volunteers.

Find out more about becoming a Dementia Advocate. 

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Why are people in rural and regional communities three to five times more likely to develop dementia? Dr Ashleigh Smith is working to understand - and hopefully reverse - this trend, thanks to a grant from the Dementia Australia Research Foundation.

What is lecanemab? Lecanemab, the new treatment for Alzheimer’s disease, has been a big news story recently and in this article, we take a closer look at what it is, if it works and what the big deal is.

How do we fit a large bed through a small door? In this article we spoke to Dr Rebecca Nisbet about the obstacles she’s overcome in her career researching the blood-brain barrier and how she is trying to fit “a large bed through a small door”.

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