Bridging the Dementia Divide: the contribution of a Massive Open Online Course on Dementia to dementia care and pedagogy

Dementia is one of the most important global health issues of our time due to its impact on both individuals and society. This thesis spans a 6-year programme of research and scholarship focused on developing an open platform for people to develop an understanding of the symptoms, progression, and caring needs of living with dementia with the intention that it would change their attitudes and perceptions of dementia. The vehicle for this project was a massive open online course (MOOC), known as “Bridging the Dementia Divide” (BTDD). The research and findings from BTDD were analysed, evaluated, and disseminated through ten published works consisting of the BTDD MOOC itself which has been studied more than 10,000 times, a TED talk which has been viewed more than 1,800 times, seven articles published in peer-reviewed journals and one chapter.
This body of work developed organically over time and involved an iterative methodological process. These works were driven by a pragmatic and reflexive approach to the work and research. This body of work has always had in mind the potential benefit to the end-user, service users, the public, professionals, patients, and people living with dementia. Because of this, specific aims were not set in the beginning but were developed iteratively over a period of five years. The initial aims and purposes of these works were to inform people about dementia and to make a difference to the lives of people living with dementia and their carers. The project then grew and developed into the development of the MOOC itself and resulted in the subsequent research surrounding it. The aims of the publications were developed in response to the developing research programme’s aims. The resulting aims of this thesis were: to conceptualise and implement a MOOC on dementia, to generate new knowledge pertaining to attitudes and perceptions and the lived experience of dementia within online fora; to evaluate the MOOC as a change intervention within the context of dementia and to discern the impact of dissemination of research findings for implementation in practice and pedagogy. This body of work was researched from a pragmatist paradigm.
This critical appraisal used Rolfe’s (2001) reflective model of “what, so what, now what” to consider the published works themselves, their impact, and requirements for future research. Research originating from BTDD has contributed to dementia care by providing educational experiences, describing the experiences of integrated care from the perspectives of carers and family members with dementia, as well as identifying the roles and responsibilities people and organisations play. BTDD made a difference in participants’ attitudes towards and perceptions of dementia. The findings from BTDD have influenced University policy, practice, and programmes and as importantly the research and publications included in this thesis have influenced national and international research projects.

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