This paper was developed by the team of Clair Eccleston, Kathleen Doherty, Aidan Bindoff, Andrew Robinson, James Vickers and Fran McInerney from the Wicking Dementia Research and Education Centre based at the University of Tasmania. Our new paper builds on the development of a Massive Open Online Course (MOOC), an educational offering on dementia which brings together expertise in the Wicking Dementia Centre and across the world, as well as from people with dementia and their carers. It was important for us to examine whether this MOOC does improve learning outcomes, and we are grateful to the participants in the study for assisting us in determining whether the course leads to meaningful improvements in dementia knowledge.
What is the main focus of your research work in the science of learning?
This paper focusses on determining whether an educational intervention designed to address knowledge deficits around dementia can be effective in boosting understanding of dementia in a meaningful away across family carers, health care workers and professionals, and others affected or concerned about dementia.
What initiated this particular study?
We established the Understanding Dementia Massive Open Online Course (MOOC) in 2013 as a way of reaching as many groups of people affected by dementia as possible. This was in response to research by the Wicking Centre that showed that there were significant deficits in the knowledge of important aspects of dementia in family carers, aged care support workers, nurses and other health professionals – this was clearly having an effect on how we approach and configure care for people with dementia at different stages of progression of the condition. Tackling knowledge deficits required a holistic, systematic and evidence-based approach across a range of areas relevant to understanding dementia at its different stages, and how best to configure care and support for the person with dementia.
The course has had over 190,000 enrolees to date, with high completion rates for a MOOC (approx. 40%). We also had substantial qualitative and anecdotal data that the course was effective, and it is highly rated by users (currently #5 ranked MOOC in the world, #1 in Health and Medicine – Class Central). We have previously demonstrated that it was highly accessible, with completion rates similar across educational backgrounds. However, it was also important to have quantitative evidence to determine whether the MOOC did lead to an increase in dementia knowledge, which is the focus of the current report.
Can you explain the main findings and what they revealed?
Our Centre’s development and validation of a dementia knowledge tool (Dementia Knowledge Assessment Scale, DKAS) was an impetus to see if the MOOC had a positive effect on dementia understanding. The study included 4,894 participants from 2 courses across 2016 and 2017, with participants undertaking the DKAS prior to and then after the MOOC. These participants were mostly female providing formal or informal care for dementia, with around half with pre-university levels of education. Participants provided information about whether they have had dementia-specific education, if they had close experience of dementia (e.g. caring for a family member) or were in the health workforce with a role caring for people with dementia. Each participant could have exposure to dementia across multiple categories, and some had no exposure.
We found that prior to the MOOC, greater exposure to dementia across these categories was associated with a higher baseline DKAS score. There was a substantial and significant increase in DKAS scores across all exposure types post-MOOC. We also determined an ideal target range for dementia knowledge based on the DKAS. Higher levels of previous education and dementia exposure were associated with greater probability of reaching this score.
How vital is this research work globally?
Dementia is a complex condition that is poorly understood, with high levels of stigma across the globe. There is also a substantial increase in the numbers of people with dementia, with the fastest rise in cases in low to middle wealth countries. The WHO Global Action Plan for Dementia advocates for a robust public health campaign to build awareness and inclusivity for people with dementia, as well as in the support for family and professional carers.
Our hope is that the Understanding Dementia MOOC will be an important tool for boosting dementia knowledge across the world, and can form an enabling evidence base for people with dementia and their carers to have more control over how care and support is provided and configured.
In addition, this data indicates that MOOCs can be effective devices to support health knowledge among key groups affected. In this regard, it is important to have good evidence around learner outcomes.
In the context of learning, what is the bigger picture?
The study shows that, regardless of previous education and prior experience of dementia, everyone is capable of increasing their knowledge of dementia. MOOC approaches may provide accessible opportunities to obtain this knowledge, potentially at the scale necessary to make a systemic difference to how we consider and support people with dementia.
The next step for the Wicking Centre is to determine how this knowledge is used by those caring for people with dementia. We are developing new tools for this ‘dementia literacy’ that we will investigate through MOOC participants and alumni. The MOOC has also been shown to provide an important means of social support for those affected by dementia, and we are investigating ways to maintain these networks after someone completes the course. In this regard, successful learning about dementia could be a pathway to an ongoing global community that can provide further benefits for individuals and communities. Finally, it will be very important for us to develop the MOOC approach for communities that do not speak English.
You can read more about the research findings in our new article: Building dementia knowledge globally through the Understanding Dementia Massive Open Online Course (MOOC) published by npj Science of Learning.