Caring for young caregivers, a hidden population

The intersection of the mental health crisis among young Americans and the growing burden of unpaid caregiving is generating an expanding, particularly vulnerable, and unacknowledged population: young people who act as caregivers for siblings with special health care needs, physically or mentally ill parents, ailing grandparents, or other loved ones.

Of the estimated 48 million caregivers in the U.S., an estimated 14 million are under the age of 24. The growing burden of unpaid caregiving is increasingly falling on young people.

We are among them. One of us (R.S.) helped care for her twin brother with autism, who needs help with various activities of daily living. The other (K.H.) helped care for her grandmother, who lives in the shadows of Alzheimer’s disease. Both of us found these experiences deeply meaningful, but we have also observed ways in which caregiving can be quite challenging.

Many family caregivers lack access to respite care, and this time constraint can lead them to forgo self-care measures. As a result, family caregivers often suffer unique psychological, physical, and financial stressors. They also experience high levels of social isolation, anxiety, and depression. In one study conducted during the Covid-19 pandemic, caregivers were three times more likely than non-caregivers to have symptoms of anxiety or depression, six times more likely to have started or increased substance use, and nine times more likely to have considered suicide. Strikingly, these risks were higher among the youngest caregivers in the study (18-24 years old) than among their older counterparts.

Caregiver burden can be even more life-altering for minors (children and teens under age 18), though they are often excluded from research on the topic. This age group, which should typically be cared for, is vulnerable to experiencing a phenomenon called parentification — a child’s developmentally inappropriate assumption of adult or parent responsibilities. Overwhelmingly, studies show that parentification of young caregivers leaves children and teens more susceptible to depression, anxiety, poor self-esteem, isolation from peers, and poor school attendance or performance.

Young adult caregivers aged 18-24 face their own set of challenges. This age group contends with expanding societal roles — establishing a career, maintaining friendships, dating, pursuing higher education, and more. These all become exponentially harder when young caregivers are simultaneously tasked with providing care for a loved one. In case a home nurse cancels last-minute, a caregiver must be ready to fill in, regardless of inflexible job or college schedules. If a loved one ends up hospitalized, going on a date drops low on the priority list. While friends may pull all-nighters to study for exams, a young caregiver may do the same to tend to their loved one through the night. These sacrifices add up and eventually take a toll on a young adult’s well-being.

Although these impacts are felt acutely at these formative ages, caregiving is often a chronic responsibility with no clear end date. One cannot simply retire from caregiving as one would a job. So those who become caregivers early in their lives often continue to balance it throughout the lifespan. For instance, while one of us (R.S.) was privileged to have family support in pursuing her dreams of higher education, many sibling caregivers do not have the same familial or financial backing to do so. Many remain stuck in cycles of socioeconomic instability, and studies show that those who begin caregiving at a young age are more likely to remain low-income throughout their lives.

Quantifying the economic value of caregiving is difficult, especially since this labor is often unpaid. However, the closest estimate, from 2012, places the economic value of caregiving by individuals between the ages of 8 and 18 years at $8.5 billion. That estimate would certainly be much higher if it were updated to reflect the population of young people providing care today, including those between the ages of 19 and 24 years and accounting for the impacts of caregiving on long-term wages and employment.

Although we stress that caregiving responsibilities can often harm a young person, we also acknowledge that the phenomenon is often inevitable. In fact, factors such as the aging baby boomer population, worsening opioid epidemic, and the Covid-19 pandemic make youth caregivers a growing population. Given this reality, young caregivers need extra support.

The first step to providing more robust support is characterizing the problem through population health research. The dearth of research on this topic in the U.S. stands in stark contrast to the larger bodies of work conducted in other developed countries. In 2020, for instance, the European Union funded multinational studies on adolescent caregivers. Similar efforts in the U.S. could help develop tools to identify young caregivers and shape policy to alleviate their burden.

While research on young caregivers remains scarce in the U.S., research on adult caregivers has begun to inform government objectives. The Biden administration’s Build Back Better plan aims to expand insurance coverage for home health care services and would also expand family and medical leave to include leave for caregiving purposes. These proposed improvements are steps in the right direction, but more targeted interventions are needed to address the unique challenges of the younger subset of caregivers.

For young caregivers, natural points of intervention would be their educational spaces, from kindergarten through graduate school. As recommended in the 2022 National Strategy to Support Family Caregivers, schools could pilot “backpack campaigns” through which teachers provide students with take-home resources like information about peer support groups or helpful websites. Schools could also hire and train counselors who are poised to meet the psychosocial needs of student-caregivers.

While national recommendations for supporting student-caregivers slowly grow in popularity, identifying student-caregivers poses an additional challenge. At the college level, 4 out of 10 student-caregivers do not disclose their dual roles to their advisors or professors. These students report facing obstacles rooted in professors’ or peers’ lack of understanding about their dual responsibilities, despite the prevalence of this experience. Efforts by higher education administration and staff to destigmatize caregiving experiences and provide accommodations to these students could alleviate stress and improve school engagement.

Health care providers can also help ease the burden of young caregivers, though this is complicated by the critical shortage of youth mental health providers, nationally and internationally. Increasing residency spots for pediatric and adolescent medicine and psychiatry could systematically alleviate these shortages, as can increasing training spots for clinical psychology graduate programs. Further, encouraging interdisciplinary collaboration between medical providers and other health care staff, such as social workers or therapists, would provide a robust support network for patients and caregivers. An even simpler “intervention” might involve a pediatrician asking each child during their annual check-up, “What are your responsibilities at home?” Such a simple question could spark a dialogue that the young caregiver might not otherwise engage in.

Interventions within education and health care are key to supporting young caregivers. At some point, many of us will require care ourselves. Tending to the well-being of loved ones who might fill caregiving roles, especially at vulnerable young ages, is an investment in the well-being of society at large.

Kimia Heydari and Romila Santra are first-year students at Harvard Medical School. Both contributed equally to this article and are co-first authors.