These days, you’d struggle to find an Australian who hasn’t been affected by dementia in some way. It’s estimated that 400,000 people across the country have dementia, and many of those are yet to be diagnosed.
Dementia is a terrifying prospect based on its reach alone, but there’s also the fact that we still don’t know exactly what causes it. While there are measures you can take to lower your risk, there’s currently no cure or vaccine.
As Australia’s population ages, the incidence of dementia is rapidly increasing. By 2050, close to 1 million Australians are expected to have dementia. Worldwide, 50 million people are estimated to have dementia right now, and by 2050, that number will be roughly 131 million.
But the good news is our scientific understanding of dementia is advancing every day. And there are practical things you can do to improve your experience, whether you yourself have dementia, or are caring for someone who does.
“It’s important that we think of ways to improve the lives of people living with dementia, and of the people who care for them,” says Dr Kathleen Doherty from the Wicking Dementia Research & Education Centre at the University of Tasmania.
“We also want people to understand the condition better, as well as the diseases that can occur, in order for them to plan better. We want to help diagnosis rates improve, while also seeing improvements in people’s quality of life, as well as in the experiences of carers.”
A world-record completion rate
Dr Doherty and her colleague Dr Maree Farrow, also from the Wicking Dementia Research & Education Centre, are part of the team behind a revolutionary MOOC (Massive Open Online Course) that, for several years, has been providing free, evidence-based information, practical advice, and community support for people looking for answers around dementia.
The Understanding Dementia MOOC is free for anyone with internet access, and is designed for patients, family, and the aged care workforce.
Since 2013, some 140,000 people from more than 180 countries have enrolled in the Understanding Dementia MOOC, and completion rates are up around 35 to 45 percent. To give you an idea of how impressive that is, the average completion rate for MOOCs, which are offered by many world-leading universities such as Harvard, MIT, and, Oxford, is typically below 15 percent.
The Wicking Dementia Centre team recently launched a separate Preventing Dementia MOOC, which stunned everyone when it set a world-record completion rate of 53 percent.
“It demonstrates how much of a gap existed, and how much this information was needed. It’s serving a really broad cross-section of people in really different settings,” says Dr Doherty.
“Very consistently, over time, we continue to attract more and more participants. Unlike lots of other MOOCs, where you deliver it a few times over and the numbers often drop away, with our MOOCs, the numbers have been sustained over several years. In fact, they’re actually growing. It makes it quite a special offering.”
Connecting people with the science
The inspiration that saw the development of these MOOCs was the simple fact that so many people are looking for real, scientifically accurate information on dementia, and they’re not interested in wading through the misinformation and mixed messages that are often found online.
“It highlights the fact that there’s so much misinformation out there, especially in the prevention space. If you Google, ‘How to prevent dementia,’ you’ll be told all kinds of nonsense,” says Dr Farrow.
“People need accurate information. And there’s plenty of research showing that the better educated people are about a condition like dementia, the better their outcomes will be.”
The team found that international experts in the field are eager to get involved to ensure that the information offered by these MOOCs is not only accurate, but is updated as soon as new scientific discoveries are made.
“We’re continually finding world-leading experts who are incredibly keen to participate and to talk about their areas of research. This is connecting people with the actual research itself,” says Dr Doherty.
“It’s global in more than the sense that our participants are global – it’s global in addressing the issue of dementia from a global perspective.”
Another key to the success of these MOOCs is that they don’t just connect users with experts in the field – they connect the users with each other, giving them a chance to be part of a community that’s going through similar experiences.
Users have the opportunity to join discussion forums, where they can raise questions or simply offer their support to those who are struggling.
“It’s more than just sitting down and looking at your computer by yourself – you’re encouraged to be part of the community,” says Dr Doherty.
What can you expect?
For those interested in enrolling in the Understanding Dementia or Preventing Dementia MOOCs, you can head to the Wicking Dementia Research & Education Centre website to put your name on the list.
If you’re wondering what kind of time commitment you’d be looking at, the Understanding Dementia MOOC is a seven-week course, and Dr Farrow says you’ll get the most out of it by spending around 3 hours a week engaging with the material and the other users. But you can complete the course in half that time per week if you’re juggling a busy lifestyle.
The Preventing Dementia MOOC is a four-week course, and it’s recommended that users put aside 2 hours per week for that one.
In terms of what you’ll learn, Understanding Dementia explains the diseases that cause dementia, how the brain is affected, and the symptoms and stages that patients go through.
Diagnosis, medical management, and best practice in terms of early-stage care and support are also covered, as are advanced care planning and end of life.
In Preventing Dementia, you’ll learn about the risk factors and how they might be reduced, plus the scientific evidence around prevention – and how to spot misinformation or commonly spread myths.
A big hope for Dr Doherty and Dr Maree Farrow is that, not only will the MOOCs improve things for people who are affected by dementia, but by educating more and more people about the condition, it will make everyone more willing to talk openly about their experiences.
“It’s been recognised that, in order to actually improve the care for people, and to reduce stigma associated with dementia, it’s absolutely vital that people understand what dementia is,” says Dr Doherty.
Key facts:
- It’s estimated that one in two people in residential aged care have dementia.
- Since 2013, 140,000 people from more than 180 countries have enrolled in the Understanding Dementia MOOC.
- Completion rates for Understanding Dementia are 35–45%.
- Completion rates for the Preventing Dementia MOOC set a world record of 53%.
- It takes just three hours a week over seven weeks to complete the Understanding Dementia MOOC.
About the researchers
Dr Kathleen Doherty joined the University of Tasmania in 2008 in a research development role, before taking up a Senior Research Fellow role at the Wicking Dementia Research and Education Centre in 2015 in order to return to full-time research. Her interests include the establishment and evaluation of Dementia Friendly Communities, knowledge and awareness of dementia, qualitative research in community settings with careworkers, carers and people with dementia, development and evaluation of online educational interventions for careworkers, health professionals, General Practitioners and the general public (Respiratory Care in Dementia, Recognising, Diagnosing and Managing Dementia, Understanding Dementia MOOC).
Dr Maree Farrow is the Senior Academic Lead for Dementia MOOCs with the Wicking Dementia Research and Education Centre, and a cognitive neuroscientist. Maree’s current research interests include community education about dementia risk reduction, timely diagnosis and early intervention for cognitive impairment, and knowledge translation. She has a number of national and international research collaborations in these fields. Maree has developed and evaluated a range of resources and eHealth tools for community education about dementia and risk reduction, including Alzheimer’s Australia’s BrainyApp and the Wicking Centre’s Preventing Dementia Massive Open Online Course (MOOC).
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Interested in partnering with the University of Tasmania? Find out more here.