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Disease and illness often motivates people to try and make a difference in the hope that others will not see or endure the suffering they have. Dementia touches people in this way.
My experience is that a significant proportion of those who have been touched by dementia express a wish to join in research to create a better future where risk is lowered, where better treatment and care responses are understood and delivered, or maybe even where a cure is found.
Simply by investing a little bit of your time now, you could make all the difference to people living with dementia.
So how do you find out about Australian-based research programs or even get involved?
Research programs often require significant amounts of funding before they can get off the ground. That funding may come from federal or state government, from private investors or through a significant gift left in a person’s Will.
Most of us don’t have the resources to support research programs in this way, yet that doesn’t lessen our desire to get involved or provide support in any way we can.
In my role I am often privy to information about current dementia research as it is happening or even before it starts, but for most people the first they will hear of dementia research (or indeed, any kind of research) is after it has taken place when results are being published for the first time. At that point, there’s no way to get involved. And that’s just the larger, more noteworthy research projects.
Much of the time, unless you work in the specific field, subscribe to the right medical journal or magazine, or know the right person, you may not ever learn about many of the smaller research programs that are taking place.
This has now changed with a new initiative that has created a way for every interested person to get involved in dementia research being undertaken in Australia.
Whether you are living with dementia, caring for a person with dementia, know someone with dementia, or are just interested in giving back to your community and future generations, you now have an opportunity to be part of some of the groundbreaking research programs that are underway right now, and into the future.
An Australian first project called StepUp for Dementia Research has been developed by the University of Sydney with support from Alzheimer’s WA, and funded by the Australian Government Department of Health.
StepUp for Dementia Research is a research participation and engagement service connecting individuals with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure.
The concept is unique in Australia and incredibly simple.
Before the launch of StepUp, there was no systematic way in Australia for people to express their interest in participating in dementia research. There was also no timely or cost-effective way for researchers to find research participants. This would result in some research projects being delayed while searching for suitable participants, or studies going ahead with fewer participants – impacting on the quality of results.
The StepUp project allows people living with dementia, carers, family and the general public to register their interest in volunteering for research projects in dementia treatment and care. Researchers undertaking studies will also be able to register their projects for people to see and volunteer in. The project will link researchers with study volunteers in order to increase the effectiveness and outcomes of dementia research.
It just goes to show that money is only one of the resources you can employ to leave a legacy. Be generous with your time instead, knowing you can contribute positively to the impact of dementia on current and future generations.
Who knows, perhaps you could even take part in something that may one day lead to an effective medical treatment, or even a cure for dementia.
