By Carol Marak
Some start at a very early age, ten or younger. And the most comprehensive national study shows that in the US, there are at least 1.3 to 1.4 million children who provide care for an aging relative or family member with a disability. The date on that study was 2004, exactly 10 years ago. Do you suppose that number has changed?
Since more people are living longer, the total number of all caregivers has increased. In all likelihood, there are more youth carers too. But we don’t know for sure what that number is, nor do we have a handle on their challenges and how we, as a nation, can help. There’s a lot we don’t know.
But first, why do youth caregivers stay hidden?
I asked that question to Connie Siskowski, the founder and president of the American Association of Caregiving Youth. Ms. Siskowski replied, “Youth carers fear someone will find out and remove them their home. They fear their family will be torn apart.”
That’s a big fear for a child or teen, and as a result, they often stay silent.
It makes sense why they don’t want you to know. Ms. Siskowski added, “The youth carer is told by the family to be quiet, don’t complain, and don’t tell anyone.”
That’s the opposite of what caregiver support organizations want families to hear. They’re counseled and encouraged to reach out for help and support, not go it alone.
Adult family caregivers are much more visible; you’d have to be blind not to recognize one because they’re everywhere. All of us know one, or we are one, or we’ve been one, or we’ll be one. A National Alliance for Caregiving and AARP study from 2012 found there to be more than 65 million caregivers in the US alone.
A recent AACY study on youth in Florida who are caregivers found that on average, they spend at least two hours a day and more on the weekends giving care to relatives at home.
Here’s just one example of a youth caregiver who receives help from AACY. Meet Chris Miller — he’s thirteen and lives with his grandmother because his mom passed away and his dad is in and out of prison. He’s her sole caregiver. What terrifies Chris the most is what he might find one day when he returns home from school — his grandmother on the floor. Chris said, “I feel like I’m on a rollercoaster, one that’s going 90 degrees down. I worry about how my life is going to be without her. How will I succeed?”
And Chris is happiest when his grandma is happy. Doesn’t sound like a typical child, does it? Yet the more than 1.4 million children who provide care face the same challenges and the same fear.
See more children caregiver stories.
So, what can be done about and for youth carers?
Ms. Siskowski’s organization has helped more than 750 children living in Central and South Palm Beach County, FL. The needs-driven services her organization, AACY, offers through its Caregiving Youth Project include everything from skills building to tutoring to home visits from social workers.
The latest study on youth caregivers was released in 2004 and it was funded by the US Administration on Aging (AoA). That was ten years ago, and the family landscape has evolved. There are more adults living longer, we have an increase in multigenerational family units, more single-parent families, more veterans, more terminally ill and chronic conditions. In short, more of everything, including more of a need for research and support.
Ms. Siskowski hopes this lack of data and research will change and that more studies and research focus on the young carers. “We need more data on this population, to better understand their needs so that we can design programs to better serve their needs,” said Siskowski.
More data is needed on this caregiver group. Viable support and attention begins with research and real data, and more needs to be done to support not only the relatives they care for, but the youth caregivers themselves.
About the author: Carol Marak is a contributor and writer focusing on the senior living and health care market. She advocates for older adults and family caregivers by writing on topics like chronic issues, senior care, and housing. Her work is found on AssistedLivingFacilities.org and HomeHealthcareAgencies.com. Find Carol on LinkedIn and contact her at Carebuzz@gmail.com.