Grant: Travel Awards - Institute Community Support

Attending to the experiences of persons living with dementia and their family members, I encountered tensions in the narrative process of telling and retelling stories. Family members expressed concerns about how their experiences would be retold, fearing potential harm in making their opinions visible. By acknowledging the concerns of persons living with dementia and their families while attending to ethics, I recognized that each person within a family has their truth, which may differ from another person. I acknowledge that no opinion or telling holds greater power than another. By attending to ethics, I acknowledged diverse and, at times, conflicting opinions and how they relate to each other. It was critical to reflect on how to tell the stories so that all perspectives remained visible. I explored diverse possibilities through written and arts-based formats to represent experiences in an ethically responsible way. In this collective approach to telling stories, I highlight the ethical importance of maintaining diverse and sometimes conflicting opinions without erasing points of tension to prevent harm. By intentionally attending to the tensions in the telling and retelling the stories of persons living with dementia and their families, I argue that we can deepen our understanding of their experiences in a way that respects each person involved without causing harm.