Can dementia education improve stress and quality of life for dementia carers?

This project compares an experimental arm where people complete a 7-week Understanding Dementia Massive Open Online Course (UD MOOC) that is designed to assist dementia carers to understand dementia and its impacts on people living with the condition, with a control arm where people receive links to information on dementia available from the Dementia Australia (DA) website. The information on the DA website can easily be obtained by anyone who seeks information on dementia and unlike the UD MOOC, it does not aim to give carers in-depth understanding of effects of dementia on people living with dementia and ways to help carers cope better with the dementia symptoms. The UD MOOC is an accessible online educational innovation that was developed in 2013 to serve as a major intervention to boost knowledge and awareness of dementia at a population level. This scalable initiative was designed to address the needs of family carers, aged care workers and health professionals, and, through education, to improve the lives of both people with dementia, and their families. Specifically, the UD MOOC seeks to support families and carers to understand dementia to provide a foundation for care throughout the trajectory of dementia. The UD MOOC is presently delivered as a 7-week on-line course (recommended 21 hours total engagement including interactive discussion fora) oriented around 3 modules: • The ‘Brain’ module covers basic human neuroscience, as well as the pathological changes that characterise the major forms of dementia. • The ‘Diseases’ module describes the diagnosis and major clinical features of dementia, as well as risk factors and medical management. • The ‘Person’ module examines the progression of dementia, therapeutic approaches, psychosocial interventions, dementia palliation and the support of the person with dementia and carer through this trajectory. The UD MOOC includes a variety of learning approaches, including video interviews with experts in the field across Australia and internationally, a range of prompted discussion fora, gamified learning and quizzes. Importantly, the UD MOOC educational framework orients around a total dementia trajectory and whole-person approach to understanding dementia, which has potentially direct psychosocial wellbeing and social inclusion effects. This is supported by accounts of the personal impacts of dementia, as described by people with dementia as well as family carers. The UD MOOC provides an opportunity to equip participants with an understanding of the trajectory of dementia and how this may influence care and, given the support and discussion fora provided to the global community of participants, also assists in building social networks and social capital to support participants. In this regard, the UD MOOC involves active learning, where, by way of participation in discussion fora, in particular, the people in the course construct the learning experience. Emails will be sent to participants in the experimental arm informing them of the availability of each module and closure of the course as a reminder to complete the modules. Participants’ engagement and progression in the course will be measured by their time-stamped logins to the course and completion of sequential modules.