The rise of young caregivers was brought to light during the COVID-19 pandemic when home health care and assisted living costs skyrocketed. Many families simply can’t afford in-home care or its exponentially more expensive counterpart of assisted living.

The Other Epidemic Covid Brought to Light: The Teen Caregiving Epidemic

By Christina Eichelkraut

During the COVID-19 shutdowns, another already ongoing underlying public health crisis was brought to light: the epidemic of teen caregivers, or young people between the ages of 15 to 22 years who were caring for relatives.

An oft-cited 2021 social policy report by the Society for Research and Development estimates there are approximately 5.4 million caregivers under the age of 18 who provide often uncompensated care for relatives who are elderly, sick or have disabilities.  Of those, women and girls make up a disproportionate amount, particularly in communities of color.

What Is Caregiving, Anyway?

The duties and responsibilities of a caregiver are vast and varied. They can be small tasks that take a few minutes—such as administering daily medications—or hours, such as bathing and dressing an immobile loved one.

Many tasks are less quantifiable and tangible but no less impactful or important. These are things like sitting and watching and television show with an elderly relative who would otherwise be lonely, holding the hand of a loved one during a medical procedure or simply offering clarity about ongoing medical issues and processes the person who needs care may be dealing with.

Still other caregiving tasks don’t involve the other person directly. These tasks can include setting up an online profile to obtain necessary government assistance, sitting on hold with various physician offices or administrative departments to set, reschedule or confirm appointments, or navigating the byzantine labyrinth of social safety net systems and insurance processes.

All of these tasks, however, share two common and pernicious traits: they are wholly unpaid the vast majority of the time, and they must be accomplished in between school, work or other recreational activities.

Impact of Caregiving on Teens and Youth

Caregiving takes up an immense amount of a person’s cognitive bandwidth, emotional energy and, especially for those caring for others with mobility issues, even physical strength. That means less time, energy and bandwidth for school, age-appropriate socializing, exploring interests, passions and career paths, homework, college applications and even the volunteer and extracurricular activities that make a college application more competitive.

So it’s unsurprising that a 2024 research article in Duke University’s publication Demography found low academic outcomes for young caregivers. (Interestingly, this article found males and females were equally likely to provide care but reaffirmed that non-White households were far more likely to have young caregivers.)

On a more psychosocial level, caregiving inevitably results in the parentification of the caregiver. This can establish patterns of behavior that set them up for less successful relationships in the future, whether it be marriage or even employment.

Reasons for Youth Caregiving

The rise of young caregivers was brought to light during the COVID-19 pandemic when home health care and assisted living costs skyrocketed. Many families simply can’t afford in-home care or its exponentially more expensive counterpart of assisted living.

It’s also worth noting that in many cultures living in multigenerational households in which the women and girls provide free domestic and caregiving labor is the expected norm.

This issue isn’t new, as this 2005 study from the American Journal of Public Health proves. However, increased media coverage and broader societal awareness has brought a new wind to the advocacy movement for this issue.

Although there are some support services for caregivers – often with a huge bureaucratic literacy threshold that requires a massive time commitment, either in the form of filling out paperwork or simply just waiting to get through the system – none are available for people under 18 years old. In other cases, benefits must be applied for by the beneficiary themselves. This simply isn’t always feasible. Asking a stroke survivor, a person with Alzheimer’s, or a veteran with vision limitations or other cognitive and behavioral challenges to fill out a multi-page online form simply isn’t a viable option in many households.

The inability to apply for assistance programs—let alone receive and administer them—is especially prevalent in lower-income households, where access to online resources or capable devices—such as a printer to scan a document that requires a wet signature—isn’t always available.

Support for Young Caregivers

The core issues that lead to young people assuming the role of caregiver are unlikely to change very quickly, if at all. Cultural norms, the public and private health care systems, and stagnant income levels in the face of ever-rising costs for basic needs like food and housing will not be anything this is solved in one legislative session, presidential term or fiscal quarter.

Disheartening as that reality is, however, there is some good news. There are more advocacy organizations that offer direct support to young caregivers, including the American Association of Caregiving Youth and Kids Are Caregivers Too. The organization Caring Across Generations actively works to change the cultural and societal norms that result in unhealthy caregiver dynamics.

Among many other things, these organizations partner with school districts to provide direct academic support to young caregivers as well as other support services.

Reward Without Sacrifice

Caregiving can also offer moments of deep love, help young people learn necessary life skills for daily living and at times be immensely fulfilling. But those rewards shouldn’t have to come at the cost of a young person’s mental health, physical well-being, investment in their education and future and – most importantly – their youth itself.

ABOUT BRAIN INJURY ASSOCIATION OF ARIZONA

The Brain Injury Association of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.