Step up and be part of the dementia solution
21st September 2022
Approximately 450,000 Australians live with dementia – almost every one of us knows someone diagnosed with or has cared for someone with this neurodegenerative condition.
Dementia is the second highest cause of death among Australians, and without a medical breakthrough, this number is expected to increase to nearly 900,000 Australians by 2058. We are not alone – it is estimated that more than 55 million people worldwide have dementia.
Finding breakthroughs or ways to improve treatment and care won’t happen of its own accord. Being able to help people living with dementia to have a better quality of life, being able to diagnose the disease earlier, and the search for ways to prevent dementia all depend on research. Effective research, in turn, depends on finding participants.
However, that has remained one of the biggest challenges. For researchers, recruiting participants for dementia-related studies is costly and time-consuming. Delays in finding the right people can result in studies taking longer to deliver, often requiring funding extensions. In addition, insufficient study samples limit the effectiveness and scope of research – the difficulty researchers face when recruiting participants directly impacts their capacity for robust analysis and the generalisation of findings.
Anybody can help advance vital dementia research through participation in studies – whether they themselves have been diagnosed with dementia or are carers, family members or among the wider public. But there can be challenges for would-be participants too. There is still a lot of stigma around dementia (although hopefully, that is diminishing somewhat), and some people just don’t feel comfortable talking about it. For some, it is a question of how and where they can participate.
StepUp for Dementia Research is one way of solving the how and where.
An Australia-wide research participation and engagement service, StepUp for Dementia Research was developed to make it easier for researchers to connect with people willing to participate in vital studies into dementia and dementia care. A “one-stop shop” if you like, that connects individuals – both with and without dementia – with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure.
Importantly, StepUp has been giving the public a voice and helping them contribute to the future of dementia research. Since its official launch in June 2019, StepUp for Dementia Research has attracted over 1,500 volunteer registrations and supported close to 100 studies across Australia.
Many more volunteers are needed. Essentially, we need our communities to be part of what StepUp calls ‘a dementia breakthrough, powered by you’.
Based on a similar and successful public engagement platform in the UK, it has been developed here through the University of Sydney with funding from the Commonwealth Department of Health.
More than 25 organisations have signed up as champions to support StepUp to reach out to communities. Calvary Health Care is one of them, and for good reason.
We are a charitable, not-for-profit, Catholic health care organisation with more than 18,000 staff and volunteers nationally in 14 public and private hospitals, more than 70 residential care and retirement communities and 19 community care service centres. Our mission is to provide quality, compassionate health care to the most vulnerable, and many of our patients, residents and clients, as well as their families and loved ones, are just that, living with dementia in one way or another.
We are doing what we can to improve and enhance treatment and care for people with dementia across all of our services. As an organisation, we have stepped up to support and promote ongoing research efforts and champion the change we want to see. Individually, many of us have also stepped up to contribute where we can. I encourage everyone with experiences or interests in this area to contribute to a better future for those with this degenerative disease.
StepUp for Dementia Research gives everyone aged 18 and over the opportunity to participate in research. It provides an easy way for people to donate time for the cause they are interested in while placing the value and potential of people with dementia at the centre of the solution.
Registration is simple. With a few clicks, participants can sign up to be contacted for ethically approved studies. Those studies can include surveys about what works in improving quality of life for people with dementia and their carers; drug trials; longitudinal follow-up studies for people who may have a family history; interventional studies looking at whether behavioural changes such as diet or exercise can improve outcomes; or identifying risk factors and biomarkers. People can also opt-out at any stage.
Australia’s population is ageing: the time to find better care and treatment options is now. Dementia is the leading cause of death for Australian women and the second leading cause of death for all Australians. It is only through research that we will better understand dementia and accelerate the search for a cure. This cannot happen without an efficient, effective method of connecting researchers with participants, or without people willing to step up to be part of the solution.