This study examined changes to dementia knowledge associated with completing the Understanding Dementia MOOC, and further, the role of experiential learning and dementia education in the acquisition of this knowledge about dementia. Participants in the UDMOOC ranged from those with limited personal or other experience of dementia, through to domain ‘experts’ possessing considerable personal and occupational experience of dementia and formal dementia education or training. We demonstrated that exposure to the lived experience of dementia through family and work settings, and/or to education about dementia, were associated with higher baseline knowledge of dementia, most markedly in those who had undertaken dementia education but also for those caring for people with dementia in the workforce and to a lesser degree those with a family member with dementia. Experience from multiple different settings was associated with the highest baseline levels suggesting a cumulative effect on knowledge, yet despite this, baseline knowledge was typically not comprehensive, even where all three opportunities for learning were available.

Undertaking the Understanding Dementia MOOC, however, was related to considerably higher knowledge scores and, importantly, reduced the magnitude of knowledge differences associated with different levels of exposure. This demonstrates that the UDMOOC can complement participants’ existing understanding of dementia irrespective of its source, resulting in comprehensive knowledge regardless of experience.

To date there has been limited evidence that MOOCs are an effective knowledge enhancement mechanism. While there has been much emphasis on design and learner attributes, learning outcomes associated with MOOCs are rarely examined (although see28,29,30). Few MOOCs, include objective measures of knowledge acquisition,30 instead choosing primary outcome measures such as engagement, retention and completion as evidence of success.31 However, not only was the UDMOOC designed to build dementia knowledge in a broad learner cohort,21 but validated and robust measures of dementia knowledge were inbuilt to assess whether this occurred.

The significance of demonstrating knowledge improvement across a wide range of participants via a free, widely available online course is particularly evident for dementia. The condition is increasingly prevalent across a globally ageing population, and there is no effective therapeutic intervention currently available.32 People with the condition are cared for in the home and workforce by family and paid caregivers, typically women, many of whom may have a limited capacity to effectively participate in adult learning due to low levels of education, low income and the time and energy required for caregiving.33 The knowledge of caregivers, health professionals and the general public about dementia is consistently reported as inadequate.4,7,10,11 The critical need to address such lack of awareness and understanding about dementia is identified by international public health advocates, including to meet the aims of the Global action plan on dementia.34,35 The current data indicate that the UDMOOC is effective in improving awareness and understanding of dementia, across groups including informal carers, care workers, health professionals and the general public.

The important contribution of experiential learning, that is, the construction of knowledge and meaning from real-life experience,36 is evident in shaping dementia knowledge. While there will be considerable heterogeneity in the nature and extent of various types of exposure to dementia (education, and family and/or workplace care), each of these contribute to the breadth of understanding about the condition. We suggest that while experiential learning may provide knowledge in some areas, it rarely addresses all of the relevant domains of knowledge, as shown by the low probability of participants with some exposure to dementia achieving the target score at baseline. However, the UDMOOC has demonstrated capacity to increase knowledge across all areas; to bring learners to a more comprehensive level of understanding. Further, despite the evident impact of previous educational experience in shaping people’s knowledge of this health condition, the equalising effect of the UDMOOC is further demonstrated by the large increases in knowledge shown for all educational groups, including that of participants without a tertiary education.

One of the key arguments for MOOCs is their democratising potential.37,38 Not only does the probability of having a comprehensive knowledge of dementia greatly increase after completing the UDMOOC, regardless of educational and experiential backgrounds of participants, but the demographics of participants indicate that the UDMOOC is being accessed by the groups that most need it. UDMOOC course participants comprise a high proportion of mid-aged females, around half without a university-level qualification; notably different from the typical educationally advantaged, male participants of MOOCs described by Stich and Reeves.39 Most of these care for someone with dementia through their occupation and/or home. While completion rates are insufficient as a measure of educational outcome, it is nonetheless also important to note that these groups are just as likely to complete the UDMOOC22 and completion rates for this MOOC since inception have substantially exceeded the typical 5–15% MOOC completion rate.23

These figures demonstrate the motivation of the cohort, suggesting the recognition of those most involved in dementia care of the importance of this education and the need for access to evidence based quality education about dementia in order to address the scale of the public health challenge that dementia presents. The global adoption and potential of this education is also evident, with the UDMOOC having been undertaken by participants in more than 180 different countries incorporating individuals of all ages and all levels of previous educational attainment.

In light of difficulties in MOOCs reaching underserved communities,39 and little evidence of the substantive educational impact of MOOCs in general31,40 and health-related MOOCs in particular,41 these data demonstrate the UDMOOC significantly improves dementia knowledge within a short-time frame for a broad range of individuals with a spectrum of exposure to the condition.

This course is an effective mechanism to educate a broad international cohort of informal carers, health care providers and the general public about dementia. This allows a fundamental requirement of the global action plan on dementia to be realised.35 In addition, it supports the ability of individuals to more effectively make decisions about their own care needs and those of the people for whom they care, so that as prevalence escalates in the community, people living with dementia will receive better quality care.