Jonathan’s grandmother has cared for him as long as he can remember, but now at age 15, he is caring for her. Lisa runs straight home from school to help her grandfather so her mother can go to work. With the increasing number of multigenerational households and grandparents raising grandchildren, more youth are assuming the role of family caregiver when the health of their older family members declines.
In the United States, an estimated 1.4 million children of ages 8-18 are caring for disabled, ill or aging family members. They administer medications, assist with mobility and manage household chores. Some provide personal care such as bathing, feeding or helping a loved one to the bathroom.
Currently, 38 percent of youth caregivers in this country are caring for a grandparent.
Youth caregivers experience the same challenges and stress as adult family caregivers. Yet, as children and teenagers, they are not emotionally equipped to manage it. This can result in profound sadness and extreme anxiety. It affects their social and academic lives. The Bill and Melinda Gates Foundation study “The Silent Epidemic” reported that among students who drop out of school for personal reasons, 22 percent do so to care for a family member.
Other countries like the United Kingdom and Australia have been supporting “young carers” for years. In the United States, they remain a hidden population and consequently feel isolated and alone. “My friends can’t relate to what I am going through,” states an 11th grader who is caring for her grandmother, who is also her legal guardian. “I feel so overwhelmed by all my responsibilities. With all that’s happening at home, it’s hard for me to keep up my grades.”
Founded by a grandparent who went back to school to earn her doctorate, the American Association of Caregiving Youth is the first and only U.S. organization that identifies, recognizes and supports children who are responsible for the care of their ill, injured, elderly or disabled family members.
A former youth caregiver, Dr. Connie Siskowski used her dissertation to study the prevalence of youth caregiving in Palm Beach County, Florida. Working together with the National Alliance for Caregiving, Dr. Siskowski contributed to the first U.S. study on child caregiving. It was funded by the Administration on Aging in 2005.
The American Association of Caregiving Youth provides information and resources to youth, families and helping professionals, conducts research and promotes awareness of the issue of youth caregiving. The Association’s local effort, the Caregiving Youth Project, works with middle and high school youth caregivers.
It provides in-school skill building and therapeutic groups; out-of-school educational and recreational (respite) activities; family evaluation home visits; an overnight camp; health education and stress management classes; and most importantly, the opportunity to connect with caregiving peers who understand. The project also links families to community resources that include tutoring, health and social services, and respite.
The youth served by the Caregiving Youth Project consistently state that joining with peers who share this experience has changed their lives. They no longer feel alone and have a safe place to express their feelings associated with caregiving. A 10th grader who cares for her blind grandfather says, “Sometimes I get angry that I have to stay home to be with my grandfather when I’d rather be out with my friends.”
Fun activities allow caregiving youth to enjoy each other and act their age. At a recent beach party picnic, a 9th grader stated, “I wish every day was like this day.”
Meet our caregiving kids
About a third of our kids care for a grandparent, another third for a parent, 18 percent for a disabled sibling, and the rest for other relatives and extended family. Forty percent of our kids care for more than one person; for example, Keith cares for his mom and for his dad, who is blind and diabetic.
For more information or to support a youth caregiver, please visit AACY.org or call 1-800-725-2512.
Cristy Hom, LCSW, is Director of Continuing Care, Caregiving Youth Project of AACY.