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As 15- to 24-year-olds take on more work helping elderly and disabled relatives, their studies suffer – and educators are just beginning to explore ways to help them

Rebekah Norman of St. Catharines, Ont., Alexandria Gonzales of Burlington, Ont. (with autistic brother Albert) and Nicholas Goberdhan of Montreal are part of a growing cohort of young Canadian caregivers. Photography by Carlos Osorio in Ontario, Christinne Muschi in Montreal/The Globe and Mail

Nicholas Goberdhan was only 15 when his mother fell into crisis, following years of cyclical bouts with mental health issues.

Mr. Goberdhan, an only child, was the one his mother leaned on: “It was about being there, being present and very mindful of the things that I said.”

When his mother was briefly hospitalized, Mr. Goberdhan didn’t know who to turn to. Feeling shame, he didn’t disclose the situation to his high school friends. He briefly considered approaching a police officer at the school: “I went up and I turned around halfway. I thought, am I revealing too much? What if this puts her in danger?”

After his mother’s health stabilized, Mr. Goberdhan went away to university. Still, fears about another breakdown dominated his thoughts. He’d call every day to check on her, and still does.

He first heard the term “young caregiver” last year. “All I knew was every couple of years, a crisis happens in our family,” said Mr. Goberdhan, now 26 and doing his PhD at Concordia University, focusing on young, racialized caregivers. “I felt like I was this anomaly, I got the bad lottery hand. I didn’t realize that a lot of people go through this.”

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At Concordia University, Mr. Goberdhan is studying how young, racialized people can become caregivers, as he did.

Some 1.25 million caregivers in Canada are just 15 to 24 years old, according to 2012 data from Statistics Canada, the most recent figures available from the agency. Experts stress that number is a significant undercount, given it excludes northern Canada as well as children under 15. As the country’s population ages, dementia cases rise and more families share multigenerational homes, young carers’ numbers will only grow in the coming years.

“It’s such a hidden population. We’ve only recently started to acknowledge in Canada that they’re here,” said Heather Chalmers, an associate professor in child and youth studies at Brock University who has focused on young carers since 2003.

Young caregivers remain a largely invisible group. They help parents, grandparents, siblings and other relatives facing problems related to aging, chronic illness, disability, mental health or substance use issues.

One in four young people help more than one person at home, according to the Statistics Canada data, which found 38 per cent had already been doing this work for four years or longer.

Young carers can be left managing the household, cleaning, grocery shopping and cooking for younger siblings. Others administer medications, or drive relatives to appointments, where they may also serve as translators. Many provide emotional support. They spend between 14 and 27 hours a week on care – the equivalent of a part-time job – according to separate studies from Dr. Chalmers and caregiving researcher Vivian Stamatopoulos.

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Ms. Gonzales holds her brother's hand. As her parents get older, she expects the responsibilities of looking after Albert will grow and have an effect on her postsecondary plans.

The care work often affects their academic performance. Some are unable to concentrate, others miss classes and homework assignments. Many feel worried, tired and overwhelmed, Statistics Canada data found. Some 60 per cent reported anxiety and sleep disorders, according to a May 2021 report from Proche aidance Québec, an organization helping informal caregivers in the province. Still, experts say too many educators overlook young carers, missing these signals.

Slowly, awareness is beginning to build around young students who must juggle their studies with care roles at home. On March 14, the Canadian Centre for Caregiving Excellence, Young Caregivers Association and AMI-Québec, an association supporting family members of people with mental illness, will convene a first national roundtable of 28 organizations supporting young informal carers. The network will share research, program models and plans to advance policy on the issue. In February, the Young Caregivers Association also launched its new Young Caregivers Knowledge Centre to help equip youth, families, educators, social workers and healthcare providers. For teachers, there is clear and specific guidance on how to identify and assist young carers in their midst.

In Quebec, several initiatives are underway to bring support workers into schools to speak specifically with young carers helping family members, friends or partners facing mental illness. Advocates are pushing for a U.K.-style model, which includes in-depth training for teachers and staff across the country’s elementary and secondary schools to help identify young, informal care providers and boost their academic performance.

“These are kids and young adults filling gaps. Young caregiving, in its most extreme forms, is really a symptom of lacking support and policy,” said Oliver Fitzpatrick, young carers co-ordinator with AMI-Québec.

And yet there is a particular shame that persists around young caregivers. Children caring for adults or other siblings in the family contradict long-held norms around childhood, a stage of life perceived as being free of responsibility. Outsiders often misinterpret young caregiving as a lack of care for the child. Many families grow secretive about their dynamics, fearing family and child services may be called.

“From a parent’s perspective, there could be guilt because your child is doing more than you ever intended for them to have to do,” said Michelle Lewis, executive director of the Young Caregivers Association. “If it’s addictions or mental illness in the home, there’s an extra layer of stigma and secrecy.”

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Rebekah Norman began to take more responsibility over her siblings in her teens as her father struggled with addiction and mental illness.

Rebekah Norman, 26, has spent much of her life supporting her father, who has a schizoaffective condition, severe depression symptoms and is recovering from addictions.

“I noticed a difference between me and other people in my life around Grade 6,” said Ms. Norman, who is the second oldest of four siblings in the family.

In her teens, as her father battled addiction and his mental illness remained undiagnosed, Ms. Norman tried to keep her siblings safe. During outbursts, they would move to a different room or wait outside in the car. “It was a lot of problem solving, a lot of having to adapt during stressful situations,” she said.

As their mother cared for their father, the siblings worked to keep the house in order while supporting their mother emotionally.

When home life became overwhelming, Ms. Norman’s two brothers left high school. Though she had confided in a sympathetic teacher about the family’s situation, nobody connected the dots to her struggling brothers.

There are signs educators should pay closer attention to, said Ms. Norman, who is doing her PhD in child and youth studies at Brock University in St. Catharines, Ont., and volunteers with the Young Caregivers Association.

Many young carers won’t participate in extracurricular activities after school, or might struggle to hand in homework. They can be unusually mature, struggling to find common ground with other kids.

“There’s a notion that young carers have lost out on their childhood and are growing up too fast,” Ms. Norman said. “But not only do you learn how to problem solve and adapt, you learn how to be very empathetic.”

In more extreme cases, some carers can become “young parents for their own parents,” said Marie-Eve Leblond, general manager of Quebec’s Réseau Avant de Craquer, a federation of associations focused on the wellbeing of those whose loved ones have mental illnesses.

“They are really responsible for themselves and other people. This can bring anxiety,” said Ms. Leblond.

Her federation organizes a program featuring relatable support workers – all ages 18 to 29 – visiting high schools, colleges and universities to talk about the realities of young people caring for parents, siblings, friends and partners with mental health issues.

Mr. Fitzpatrick is advising on a separate pilot project to establish go-to support workers for young carers at two high schools and two CEGEPS in Quebec; the hope is to broaden the program nationally.

In Ontario, the Young Caregivers Association has been offering an 8-week, in-school program throughout Niagara’s public and Catholic boards since 2015, designed to help young carers cope. Led by other caregivers, the sessions allow kids to consider how they feel about their carer roles. They discuss stress-management skills, including communicating with family about much-needed breaks, quiet space and time to do things they enjoy.

Young carers also need periodic flexibility at school, said Mr. Fitzpatrick. It could be as simple as sharing class notes or recordings when young carers must miss a class, or scheduling tutoring over lunch, not after school when they have duties at home.

“A lot of kids consider school to be a safe space: It’s predictable, it has a routine. It’s somewhere where they get to be away from those responsibilities,” Mr. Fitzpatrick said. “And lot of them look at school as a way out. If they can achieve a higher level of education and get a good paying job, they can help their family.”

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Ms. Gonzalez is planning to pursue her graduate studies close to home. 'I thought, I can’t just move away, because I want to be near my family – and I want to take care of my brother.'

As she contemplates her future caregiving role, 25-year-old Alexandria Gonzales has made a point of only applying to graduate medical and dentistry programs close to home. Ms. Gonzales helps her 33-year-old brother, Albert, who has autism, and lives with her, another brother and their parents in Burlington, Ont.

After getting her driver’s licence at 17, Ms. Gonzales would pick her brother up from his day program after her own school day ended. When his day program was paused during pandemic lockdowns, it was up to her to help keep him socially engaged. The two took walks, went on country drives and ran errands, visiting bookstores and coffee shops once restrictions lifted. She’s also accompanied him on medical appointments.

“I have a purpose there of keeping up to date with my brother’s health. One day I will be in my mom’s role of looking out for him and making informed decisions,” Ms. Gonzales said. “The sibling is there not just because they’re blood-related to the person but because they care.”

Though her parents insist she focus on her own aspirations, Ms. Gonzales is realistic that her care responsibilities will likely intensify as her parents age.

“I saw a lot of my classmates move away to go to med school, dental, pharmacy programs. They could just move and focus on themselves. When I thought about that, it made me worried and I got a little envious. I thought, I can’t just move away, because I want to be near my family – and I want to take care of my brother.”

While she doesn’t expect special accommodation at university, Ms. Gonzales would like to see more awareness among faculty about students who might be balancing demanding studies with care work at home.

“If the conversation about the caregiver role is there, it could help others show us a little grace in those times of difficulty.”

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