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The Hidden Struggles And Rewards Of Youth Caregiving

photo of a young woman pushing someone in a wheelchair
Pxhere / Public Domain

More than 40 million people provide unpaid care to a family member or loved one, according to data from the National Alliance for Caregiving. But these statistics leave out youth caregivers: a group of more than a million young people under the age of 18 who care for a family member because of a chronic health condition, disability, or a mental health problem, including addiction.

The last time youth caregivers were surveyed was 2005, and the statistics from that survey show there are between 1.3 and 1.4 million young people who fall under the definition “youth caregivers.” Host Frank Stasio talks to Elizabeth (Betsy) Olson about the research on youth caregivers and what support is available for them. Olson is a professor of geography and global studies at the University of North Carolina at Chapel Hill.

Twanna Monds also joins the conversation. She’s a board member for Bookend Caregiving, an organization dedicated to supporting children who care for parents or grandparents. She’s also a school counselor in the Chapel Hill-Carrboro School District, and she was a youth caregiver for her grandmother, who had diabetes. Monds has multiple sclerosis and is considering the possibility that her young children might become her caregiver in the future. 

Resources for youth caregivers can be found at the American Association of Caregiving Youth's website.

Interview Highlights

Olson on what tasks caregivers may have to do:
They do everything from helping people get out of bed in the morning, helping them prepare for their day, getting them dressed, getting a shower, feeding them and so on — straight through to providing company, helping to do additional cleaning around the house or maybe shopping.

Monds on her own experience caregiving for her grandmother as a child:
This was my job. This was my chore. I thought that was just part of the normal task that you do when your grandmother is not [well]. But I didn't realize it was a lot until I'm much older. But yes, every day you go and you make sure everything is taken care of. She's taking her insulin. You call her: Did you take your insulin? No, I'm having a hard time with the shots. So you go over there, and you get the injections. You go to the grocery store every week. You make sure she has her meals. You bathe her every day, and that's just part of what you do.

Monds on the support she wished she had:
It would have been nice to have just that support in place, maybe from a teacher to understand that this was going on. It never affected my grades — however it could have — but sometimes I had to leave school early, and I would come to school late, and so that affected my attendance.

There's a big concern that it will be misinterpreted as neglect. And so a lot of what we do is talk about it so that people understand when a young person is providing care they're also gaining all kind of benefits. - Betsy Olson

Olson on a successful support program:
We know of one really successful program that has been managed in West Palm Beach County School District called the Caregiving Youth Project, and that's driven by the American Association of Caregiving Youth. They go into the schools, they have lunch meetings … Stress and depression can be quite high amongst youth caregivers, [so they] help them figure out how to manage that. [Youth caregivers] tend to be bullied or may become bullies themselves depending on the situations that they end up in, so trying to help young people support themselves and help their families be proud of being a caregiver. And if things get too difficult … They have people to go to who can help support them and find resources.

Olson on the benefits of youth caregiving:
There's a big concern that it will be misinterpreted as neglect. And so a lot of what we do is talk about it so that people understand when a young person is providing care they're also gaining all kind of benefits: empathy, maturity, all kinds of things that they get from caregiving, as long as it doesn't become detrimental to them. So educating folks so that they don't think it's neglect is a big role of ours.

Amanda Magnus is the executive producer of Embodied, a weekly radio show and podcast about sex, relationships and health. She has also worked on other WUNC shows including Tested and CREEP.
Longtime NPR correspondent Frank Stasio was named permanent host of The State of Things in June 2006. A native of Buffalo, Frank has been in radio since the age of 19. He began his public radio career at WOI in Ames, Iowa, where he was a magazine show anchor and the station's News Director.
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