Background: As primary caregivers for my mother who lived with dementia in our home, my young daughter and I were immersed in intergenerational caregiving. Inadequate dementia homecare became shockingly apparent during the early days of the COVID-19 pandemic, which necessitated navigating the long-term care (LTC) home placement process. My mother placed in a LTC home two hours away, we all became immersed in strict infection prevention and control policies that isolated residents from their loved ones. I was eventually permitted to visit as an “essential” caregiver, but as a youth caregiver, my daughter was restricted from visiting for months at a time. This experience inspired my doctoral research, which seeks to understand youth caregiving relationships with residents living with dementia in LTC, a critically understudied caregiving phenomenon.
In Ontario, visiting restrictions remain in place to address COVID-19, acute respiratory infections, influenza and cold viruses, resulting in prolonged periods when youth are unable to visit loved ones in LTC, an estimated 70% of whom live with dementia. Being denied the possibility for social engagement has rendered these caregiving relationships invisible.
Methods: In this presentation, I explore intergenerational relationships alongside dementia using a relational caring – critical youth studies theoretical framework and the arts-based research methodology of digital story.
Results: Using evocative imagery, voice, music, and narratives from interviews, digital stories are short videos co-created with participants to explore the lived experiences of individuals and phenomena underrepresented in research. Stories drawn from this inclusive methodological approach enable audiences to gain insights into otherwise unseen intergenerational caregiving relationships with people living with dementia and offer new ways of supporting these complex relationships.
Discussion: Exploring experiences of youth caregiving through digital storytelling offers a powerful resource for contributing new understandings of the very nature of “essential” caregiving for people living with dementia.

Melanie Lalani is a PhD candidate in the Dalla Lana School of Public Health at the University of Toronto. Melanie’s research is inspired by the relationship between her mother, who lived with dementia and her adolescent daughter. Melanie is using arts-based methods such as painting, photography and digital storytelling to explore meaning between people living with dementia in long-term care and adolescents. Melanie is a Course Instructor in the Department of Health Studies at the University of Toronto Scarborough, applying narrative medicine approaches in relational care ethics and pedagogies.

COI Disclosure: I do not have an affiliation (financial or otherwise) with any for-profit or not-for-profit organizations