Including the voices that matter in our education programs: The value of lived experience

Authors and presenters*

• Alison Canty, Wicking Dementia Research and Education Centre, CoHM*

• Pip Tyrrell, Lived Experience Expert*

• Mia Lindgren, CALE

• Samantha Poulson, Wicking Dementia Research and Education Centre, CoHM

• Rory Dick, CoHM

• Panos Alexopoulos, School of Health Sciences, University of Patras

• Sven Vanneste, Global Brain Health Institute, Trinity College Dublin

Abstract

In April 2024, the Wicking Centre hosted two Irish dementia advocates, who shared their experience of living with dementia with staff and students. During their visit, they met with local dementia advocates to share stories of making a difference for people with dementia. They met with students, spoke on local radio, and hosted a research seminar focussed on how to effectively include people with lived experience in research programs. Staff asked a range of questions, and responses were filmed as the advocates described the challenges of life with a neurological disease. These videos are now infused across our curriculum and provide students with access to authentic personal stories of dementia: providing rich learning opportunities grounded in personal experience. We are now extending our suite of video stories to include voices of Tasmanians living with, and caring for people with dementia, and their experience of the Tasmanian Health System. In this extended collection, we will also invite a range of health and social care experts to respond to the stories, explaining how they would offer support from within their scope of practice. This will generate a rich suite of video resources and interprofessional learning opportunities for University of Tasmania students, within and beyond Wicking Centre courses, where the lived experience of neurological disease is at the centre of student learning. We plan to evaluate impact on student learning in 2025, and are willing to share these resources with others and to assist with adapting our approach to different learning settings.