The Wicking Dementia Research and Education Centre, based at the Faculty of Health at the University of Tasmania, is now the largest provider of dementia education in the world.
It is also one of the most innovative: in 2013 it launched the world's first Massive Open Online Course (MOOC) devoted to dementia.
Since then, more than 70,000 people from 155 countries have enrolled in the free 27-hour online Understanding Dementia course, which draws upon the expertise of neuroscientists, clinicians and dementia care professionals, and people with dementia and their carers.
Within each unit, participants watch and listen to a series of short videos of experts discussing dementia, learn about authentic cases and do interactive projects.
"We have a completion rate of 36 per cent, which is outstanding compared to the global MOOC average of between six and nine per cent," says Andrew Robinson, Professor of Aged Care Nursing and Co-Director of the Centre.
The course is designed to be accessible and appealing to people from diverse backgrounds, including health professionals, residential facility support staff, health policymakers, social scientists, people in the early stages of the condition, their families and carers, and individuals with a general interest in dementia.
They study three units: the first, on 'The Brain', considers basic concepts in nervous system anatomy and function, the pathology underlying dementia, and current and future research into varying presentations of dementia. The second, 'The Disease', explores the differences between typical ageing and dementia, risk factors for dementia, symptoms, diagnosis, and medical management. The third,'The Person', considers the insidious onset of dementia, living with dementia, the progression and stages of the condition, associated behavioural changes, and caring.
Significantly, the course completion rate is the same if the student has a tertiary degree or certificate level education.
Professor Robinson says the Wicking Trust took a "real leap of faith in us" in funding the creation of the Centre, which brought together "strange bedfellows": neuroscientists and social scientists.
"That's a very unusual partnership, not just in Australia but globallly too," he said. "Historically those two groups would have very little to do with each, and might even have some antipathy at times, but they are a very creative and critical partnership when it comes to dementia."
"If you don't understand the neuropathology of dementia, and how it progresses, you're not going to understand what the wider care needs are. And you get inappropriate care in response to poor understanding of dementia, such as a care worker saying 'I told you not to do that, you're very naughty' when people with dementia are not 'compliant'."
Professor Robinson remembers sitting at a dinner about five years ago with a neuroscientist who was dumbfounded that dementia was not widely accepted as a terminal condition.
"In neuroscience, it was just a given and knowing that gave our social scientists the confidence to challenge the prevailing discourse," he said. "We were able to argue that so many people with dementia were having unnecessary burdensome interventions in the last three months of their lives rather than making sure they were getting the best quality of life."
That revelation also had profound implications for the Centre's work after it conducted research that found 60 per cent of families and 50 per cent of aged care staff did not understand dementia. Just as interesting was the design of a new dementia knowledge assessment survey that allowed the Centre to compare knowledge between family, care workers, allied health specialists and doctors."
"It showed you could have a family carer with very little decision-making power with a much better knowledge of dementia than the clinician who is responsible for decision-making.
"If you don’t understand something, how can you provide appropriate care?" he said.
In response, the Centre developed a Bachelor in Dementia Care, which like the MOOC course delivers learning in two inter-related streams: neuroscience and care and health services. Started in 2012, it's now in the top three of courses offered at the University of Tasmania and the only course of its type in Australia. Many of the nearly 2,000 students that are currently enrolled work in the aged care sector, helping to build workforce capacity and knowledge.
Without the support of the Wicking Trust, Professor Robinson says, "none of that would have happened".
Having the funds to set up a centre established an identity and a critical mass that enabled it to achieve early success and attract significant additional funding, including through the National Health and Medical Research Council for three streams of research – translational neuroscience, dementia trajectory and translational health services research – which then informs the education programs.
"That's meant that we are really now a global player," he said.
In 2016 the Centre will develop a new MOOC called ‘Preventing Dementia?’ and a series of short courses, based on the Understanding Dementia MOOC that can further promote a better understanding of dementia across the world.
The JO & JR Wicking Trust has been providing support to what is now known as the Wicking Dementia Research and Education Centre since 2008. The Trust’s current grant commitment to the Centre concludes in late 2017.