Dementia and Young Carers: An Often Overlooked Issue

By Dr. Vivian Stamatopoulos, Associate Teaching Professor

This past October I attended an event hosted by the Women’s Brain Health Initiative where Kim Campbell spoke about her journey caring for her late husband and country music legend Glenn Campbell (featured in the documentary entitled I’ll Be Me). I had the chance to speak with Kim after her talk and something she said has stayed with me since. She talked about her ongoing nightmares from the often traumatic experiences linked with her husband’s Alzheimer’s and how the trauma remains with her well after his passing in 2017. She even wondered whether what she was experiencing could be a form of post-traumatic stress disorder (PTSD); a condition that can develop after exposure to a traumatic event(s), marked by symptoms including flashbacks, nightmares and severe anxiety (Lancaster, Teeters, Gros & Back, 2016). To be sure, Kim is not alone, and there is a developing body of research focusing on the connection between unpaid family caregiving and PTSD.

Alzheimer’s disease is the most common irreversible and fatal form of dementia, comprising symptoms including changes to one’s memory, judgment, reasoning, mood, behaviour, communication and the ability to function day to day (Chang, Patel & Schulz, 2015). Those caring in the context of Alzheimer’s (and the host of related brain disorders under the dementia umbrella) may be particularly prone to experiencing PTSD given the challenges associated with Alzheimer's progression. Even a team of experts and supportive family advocates assisting the Campbell family could not diminish the difficulty in living with this disease. Now imagine being a child or youth taking on a substantial caregiving role for someone with dementia. It happens more often than you think and the number of younger caregivers, or 'young carers', as they are referred to in the wider literature, will only continue to rise with our aging population.

My research focuses on children and youth who find themselves in substantial and ongoing caregiving roles, often for a parent, sibling or grandparent. My analysis of Statistics Canada’s General Social Survey points to more than 400,000 Canadian youth aged 15 to 24 who provide care in the context of aging, which includes Alzheimer’s and dementia (Stamatopoulos, 2019). Indeed, this group of young carers/caregivers represents the largest cohort within the broader group of 1.25 million youth aged 15 to 24 who provided informal caregiving in 2012, up from the 1.18 million first documented in 2005 (Stamatopoulos, 2015, 2018).

What is it like for young people navigating such caring roles, often without any formal assistance? On Thursday, January 16 join me, the Durham Alzheimer’s Society and Kathleen and Emily Fraschetti (featured in the TVO documentary Much too Young) to discuss some of the issues young Canadians face when doing just that.

About the researcher: Vivian Stamatopoulos, PhD, is an Associate Teaching Professor in the Faculty of Social Sciences and Humanities at Ontario Tech University. Her research over the past five years has focused exclusively on child and youth-based caregiving (i.e., young carers) in Canada. For more information, contact Vivian at vivian.stamatopoulos@ontariotechu.ca.