More than 40 million Americans provide care to an elderly or chronically ill relative at home. An increasing number of these caregivers are children or teenagers.
Young caregivers perform all kinds of tasks, including medically complex roles such as giving injections, managing tube feedings or handling medical equipment. They bear heavy responsibilities with little support.
MemoryWell reached out to Julia Belkowitz, whose research focuses on youth caregivers, to understand the impact that these caregiving tasks have on young people. Belkowitz is a pediatrician and professor at the University of Miami Leonard M. Miller School of Medicine in Boca Raton, Fla.
The following is adapted from our conversation. It is edited for clarity and length.
MemoryWell: How many youth caregivers administer medication to family members? How big is this issue?
Belkowitz: It’s hard to pin down these numbers, because there’s very little research in the United States. Families also don’t tend to report it, due to the stigma of illness and fear that the authorities will get involved and possibly separate the children from the home. But it’s important to remember that all figures citing the number of caregivers in the US only count adults, and not the children, which means children are administering these tasks without the recognition and support that the adult caregivers have.
The American Association of Caregiving Youth (AACY), which is the only US organization solely
dedicated to addressing caregiving youth issues, cites a 2005 National Alliance for Caregiving figure of 1.3 million caregiving youth ages 8 to 18. Not only is that figure out of date, but we believe that trends, such as that of grandparents raising grandchildren and increased home health care, could mean that the number is substantially larger today.
Youth caregivers perform multiple tasks, of course. However, records from the AAYC showed that 36 percent of the children and teens who participated in their program manage medications for a family member, and this was only in one county. This led us to zero-in on this task with a study of youth caregivers to explore the issues surrounding medication administration by youth caregivers.
MemoryWell: There is research showing that youth caregivers have higher levels of depression and anxiety than noncaregivers and that they are more likely to struggle in school.
Belkowitz: There is also research that suggests there can be some potential benefits as well. However, it’s important that these kids receive support in order to recognize those benefits, as they do in other countries. In Australia and the UK, for instance, the issue has been well-researched. There are many support groups and “youth carers” receive financial support, but this is not the case in the US, which is decades behind in this matter.
MemoryWell: What should be done about it?
Belkowitz: When I was training to be a pediatrician, there was never any mention of the issue. While I was in practice, I knew intuitively that there were kids taking on more at home, but that was about it. Meeting Dr. Connie Siskowski, founder and president of the AACY, during my work in the community was a real eye-opener.
We need to create more widespread recognition of youth caregivers among the medical, school and caregiver communities. And doctors need to be aware of that children might be carrying out the instructions they give for homecare.
Once people see this is an issue, they will dedicate more resources to research and support. That is the first step to assuring that our policy is inclusive and supportive of these youth caregivers. They need to be recognized by all of the communities in the care continuum and receive government support, as they do in other countries, so that they will be able to thrive in their own lives.
MemoryWell: What are you doing about it?
Belkowitz: In my capacity as a medical educator, I work with students who are conducting research on youth caregiving. The lead author on the medication administration paper was one of my students. Another is currently studying the role that poverty plays among caregiving youth.
It important that the medical community understand that these kids exist. One of my students is currently conducting a survey among health care providers to assess their awareness of the youth caregiver issue and bring attention to it as broadly as possible. I also speak directly with medical students during their pediatrics rotations and, with Dr. Siskowski, on grand rounds. Together, we’ve submitted a resolution on the matter to the American Association of Pediatricians.
As more of these future healthcare workers come into contact with the issue, we’re creating an army of caregiving youth advocates.