They’re too young to drive or vote — but they’re caring for their ailing loved ones

In some ways, Najiha Raman is not so different from other 17-year-olds. She crams sometimes for exams. She struggles with some subjects in high school and excels in others. 

But in one important aspect, she’s quite different from most of her peers. Since she was about seven, she’s been taking care of her mom, who was diagnosed with ALS when Najiha was three years old.

“Sometimes, I would try to help her with the wheelchair — but it was a lot bigger than me,” she remembers.  

It was years before Rahman realized that her responsibilities — such as helping her mom drink water, eat food, adjusting her body when she was uncomfortable —  were not quite typical for kids her age. 

Rahman says her dad and sister tried their best to shield her from those responsibilities, but there was so much to do that some of it fell on her. 

“As I’ve gotten older, and I’ve spoken more with my sister,” she said, “I kind of decided like, oh yeah, this isn’t normal. I am doing things that are a bit beyond what I should be doing, and I should be proud of myself for that.”

Across Canada, about 1.5 million Canadians between the ages of 15 and 30 are looking after loved ones with long-term health problems, according to a 2018 survey from Statistics Canada — the last time the government agency took count.

That may not be the full picture, however. Not only are the figures outdated, but even at the time, the agency didn’t count caregivers under the age of 15. 

The needs have only grown since the StatsCan survey was done — especially after the pandemic, says Vivian Stamatopoulos, a sociologist at Ontario Tech University who has researched the subject and advocates for caregivers.

“A lot of people have not been able to get preventative care, meaning later stage illnesses and more care to provide,” she said.

The stresses of caregiving — on top of the usual stress of adolescence — means young caregivers are at higher risk of mental health challenges, such as depression or anxiety, social isolation and falling behind in school, say experts. 

And the number of young caregivers is only expected to increase as Canada’s population ages, says Stamatopoulos.

According to projections by Statistics Canada, by 2068, more than one in four people will be 65 and older, even with higher fertility rates. 

But the services available to care for them are not keeping pace. According to data published last month by the Canadian Institute of Health Information, fewer people are working in long-term care homes than before the pandemic, and staffing levels continue to decline.

There is also the question of affordability: Some organizations, such as the Canadian Cancer Society, have criticized the Canada caregiver credit, saying it doesn’t go far enough in helping people pay for services outside the hospital. 

All this means caregiving responsibilities will trickle down to the whole family, says Stamatopoulos. 

“Because of all of this, the odds are more young people will be drawn into unpaid care,” she said. “They will not be spared from having to take on this responsibility.” 

But young caregivers also have unique challenges. They are harder to identify because unlike adult caregivers, they are less likely to have peers who have also experienced the stresses and responsibilities of caregiving and are less likely to talk openly about it, Stamatopoulos said. 

“They are a hidden population.”

A recent case study published in the peer-reviewed journal Canadian Family Physician says primary care teams should take an active role in identifying and supporting these young people as part of treating their loved ones.

“Caregivers might not even realize that they are caregivers until there starts to be detrimental effects to their mental health and well-being,” said Lucas Perri, one of the co-authors of the report.

Perri has seen it firsthand. Starting at age 14, he cared for his grandfather who was paraplegic and had lung disease.

“I felt both proud to be looking after someone that I really, really cared about. But also, I was feeling quite overwhelmed, because I would often miss school activities,” he said. “I wasn’t really sure what to expect when it comes to his care or his progression.”

After his grandfather died, Perri started volunteering at a palliative care unit. That’s when he realized there were others like him — caregivers of all ages. He wishes health-care workers had asked him and his peers about their mental health at the time.

“Do you have any issues going to school in the morning? Do you have any issues when it comes to participating in class? Do you feel drained?” Perri said, citing questions that would have helped. 

Perri says he thinks family doctors could be the ones asking these questions, and identifying and supporting young caregivers, because they often care for multiple family members and have a bird’s-eye view of the patient’s health.

Dr. Karen Okrainec, an internal medicine specialist and a clinician-scientist at University Health Network, in Toronto thinks that would be a good start.

“[Family doctors] may be more likely to recognize a child who may be providing care,” she said, “but I’ll caution that I don’t think family physicians are the only […] solution,” she said.

“All health-care providers … can play a role in supporting young caregivers.”

While treating patients with complex and chronic diseases, Okrainec has often recognized young caregivers, sometimes as young as 10 or 11. 

“I’ve seen some young carers just kind of break down and cry, and share how difficult it is and how no one’s really asked them how they were doing.”

Okrainec says there are resources that are available for young caregivers, but health care workers need to be able to identify those who need them.

She created a tool kit for her colleagues, which lays out how to identify young caregivers in their practice and includes a list of resources around Canada. 

Canada could also look at what other countries are doing to support their young caregivers, experts say.

Local governments in the U.K. must assess young caregivers’ situations to ensure their responsibilities don’t affect their mental health, well-being or school. 

“Most importantly, [the U.K. government] also provides them direct payments to kids, where these children can either hire help, access help that is already provided by the government, or […] use that to provide supplies,” said Stamatopoulous. 

It’s the kind of resource that could be helpful for caregivers such as 17-year-old Rahman. 

“I don’t think my situation is something I feel bad about. I think my mom is great, and I don’t want people to think anything less about my mom,” she said.

“But at the same time, I think you can not pity someone but still recognize that their situation is not ordinary.”