Little-known caregivers

The preteen down the street who chronically misses the bus may not be dawdling over his breakfast; he may be coaxing his grandmother with Alzheimer’s to take her morning medication. As many as 1.4 million U.S. children age 8 to 18 are caring for a parent, grandparent or sibling with a disability or illness, according to data presented at APA’s 2010 Annual Convention as part of the “Connecting with Caregivers” presidential programming track.

Many of these young caregivers are from low-income, single-parent households. Almost a third of them help with at least one activity of daily living for a loved one, such as dressing, feeding or bathing. Many are falling behind in school, losing sleep, and struggling with anxiety or depression as a result of their caregiving duties, said Gail G. Hunt, chief executive officer of the National Alliance for Caregiving, who conducted the 2009 “Caregiving in the U.S.” study. Few tell their teachers about their responsibilities at home, yet 58 percent of these children are “too worried to concentrate on their schoolwork,” according to the study. Most of these children report high levels of stress, losing friends and being unable to participate in afterschool activities, Hunt said.

Not surprisingly, the more responsibilities children had, the higher their stress levels and the poorer they performed in school. To make matters worse, children in many ethnic-minority families who are the only English-speaking family members are often missing school to serve as translators for family doctor appointments, Hunt said.

While the topic of child caregiving is “fairly invisible” in the United States, the United Kingdom, Australia and New Zealand are “way ahead of us in recognizing that children under 18 are doing family caregiving,” said Hunt. These countries have been gathering data on young caregivers and establishing support programs for them.

The topic gained some momentum in the United States in 2006, when the Gates Foundation funded a study on school dropout rates among young adults. The report documented that, among young adults who dropped out of school for personal reasons, 22 percent said they left school to care for a family member, said Connie Siskowski, RN, PhD, of the American Association of Caregiving Youth.

While few U.S. programs exist to aid these children and teenagers, a program Siskowski runs in Palm Beach County, Fla., shows promise in helping them keep up in school and cope with the stress of their demanding roles. In the county, 15 percent of the 5,500 middle school students surveyed are caregivers with a level of responsibility that makes them eligible for Siskowski’s Caregiving Youth Project.

Among other services, the project arranges for visits from home health aides, offers in-home tutoring for students who can’t stay after school and provides computers for caregiving students whose families can’t afford them. The program also offers workshops on problem-solving and anger management, as well as social activities as a break and a chance to connect with other youth caregivers.

“It’s a time where kids can learn about each other’s situations and know they are not alone,” said Siskowski.

For more information on youth caregiving, visit the National Alliance for Caregiving, the American Association of Caregiving Youth and APA's Caregiver Briefcase for Psychologists.