How to help youth caregivers

March 1, 2008

Creation of an organization that provides support for children who are caregivers of adult family members.

Not every child gets 18 years of childhood. Some have to become responsible adults well before their bodies grow into maturity.

According to a 2005 National Alliance for Caregiving/AARP report, over 1.3 million children in the US serve as caregivers for siblings, older relatives, and family friends. Of these young caregivers, 38% care for a grandparent, and 34% for a parent. The numbers overlap when an ailing grandparent is raising a child alone.

These children often have no one looking out for them. Illnesses such as substance misuse, Alzheimer's disease, and mental illness make the child's guardian unable to fulfill their responsibilities, or even care for themselves.

Siskowksi suggests asking your pediatric patients if they have a relative or friend who is staying at home who is sick. Ask if they help provide care for that sick person. If they do, a few words of encouragement could be quite welcomed.

Caregiving youth often neglect their own health by putting their well-being on the back burner, something seen with adults as well. They might have missed well visits, and have no scheduled sick visits. They can do poorly in school, if they have little time of their own to study, or can't make all their classes. They often feel isolated by fate, unable to hang out, date, or be a kid.

Many inherent challenges of youth caregivers could resemble other teen problems, Siskowski says. Consider a 13-year-old with scanty attendance, plummeting grades, and a tendency to anger, confusion, and depression. Possible signs of attention deficit hyperactivity disorder? It could also be due to caring for an ailing parent or grandparent.

AACY's goal is to set up a nationwide system of support for youth caregivers. Resources for assistance would be available in every school, community service center, and health care facility. This help would let them focus on school work, activities, and living their life. "It shouldn't all be put on their small shoulders," Siskowsi notes.

Before any of that can happen, though, youth caregivers as a concept has to be acknowledged. "The term is not commonly used," says Millie Barber, MD, a pediatrician and child advocate. For many, caring for older relatives is part of growing up. Often, adults who served as youth caregivers aren't aware of their roles.

"And not all of the ramifications are negative," notes Siskowski. "Kids learn some life skills and responsibilities they may otherwise not learn. It may put them a little bit ahead." Still, they should not do it all by themselves.

Barber adds that the average youth caregiver is in middle school, which is where AACY's initial outreach programs are aimed. That means that kids as young as 6 or 7 could be toiling as home health aides. As their responsibilities grow, so do their stresses.

Youth caregivers might need counseling, financial support, or social services to ease some of their burden. "They often don't know what support is out there," Siskowski says. Some are physically ill from fatigue, or from moving heavy adults. AACY is working on building such a support network. Until then, the pediatrician could be a lifeline for a struggling hero.

"We're all taught in medical school, 'If you don't ask the question, you never get the answer,'" Barber says. Asking pediatric patients if they help care for someone ailing at home is the first step to providing youth caregivers with the extra care they in turn need.

Visit the American Association of Caregiving Youth at http://www.aacy.org/, or 800-725-2512 for more information.