Now Is the Time to Act for Youth Caregivers

I am 34 years old and have been a caregiver for 23 of those years. My mother became disabled when I was 11, a result of a relatively routine spinal surgery performed incorrectly. My older brother dropped out of college to care for me and our mother, which included paying all of our household bills. I primarily assisted my mother with mobility aid, wound and intimate care and medication administration. We did not have any home health assistance, such as nurses, physical therapists or social workers.

My childhood was marked by social isolation, anxiety over my mother’s health and our family finances and internalized pressure to succeed. As I grew into young adulthood and my mother’s health somewhat stabilized, my caring role shifted to one slightly more anticipatory in nature: I knew that one day she would grow old and become my full responsibility, so I threw myself into education and work, hoping to carve out a middle-class existence that would support her, myself and future children of my own.

Abrupt Change to Best-Laid Plans

Youth caregiving has also given me my life’s mission. As I sought to change the world for other children and young adults with caregiving responsibilities, like my brother and me, research and advocacy became my mechanism to enact that change.

But that all shifted radically almost two years ago, when my mother experienced a debilitating stroke due to a medication error in a hospital. This time around, my brother was unable to act as caregiver due to his own family responsibilities.

On paper, I was a promising and privileged young academic. In reality, I was precarious, broke and accountable for the livelihood of another adult.

Further disabled, my mother now requires the use of a wheelchair and has lost movement on the right side of her body, has lymphedema, and apraxia of speech. This new situation thrust me firmly back into a caregiving role that felt far too soon according to my life plan. At 32 years old, I had been working as a post-doctoral fellow in Europe, researching adolescent youth caregivers’ mental health. On paper, I was a promising and privileged young academic, but in reality, I was precarious, broke and now accountable for the livelihood of another adult. The night of my mother’s stroke, I immediately left London and came home to Nashville. I broke the lease on my apartment in England and found us a wheelchair-accessible home in a senior living community.

Ironically, I became a living embodiment of my research. I knew what it was like to be a child caregiver and now again a Millennial caregiver in my early adulthood. As a child, I had lain awake at night praying that God would transfer my mother’s chronic pain to me and allow her to live a long life. As an adult, I lay awake at night and worry how bills will be paid. Ever since I was a child, I possessed a profound awe for the sacrifices my brother made at age 19, providing care during his early young adulthood years. But now, I understood those sacrifices and furthermore, the weight he carried on his shoulders.

This is why I am continuing to shout ad nauseam: we are not doing enough to support youth caregivers in this country.

There are an estimated 5.4 million children and adolescents with a caregiving role for ill or disabled family members, and our society is failing them desperately. That figure is an extremely low estimate, as we have yet to conduct a dedicated youth caregiver prevalence study in the United States, putting us far behind European counterparts such as the United Kingdom. It is also a figure released before the COVID-19 pandemic struck, thus, the current estimate does not account for the children affected by the 11.1 million adults newly disabled because of long COVID.

The impacts of caregiving at young ages has been well-established, including poorer mental and physical health in comparison to non-caregiving children, higher incidents of bullying and lowered school performance. Depression, anxiety and self-harming behaviors including suicidal ideation, have been reported in this population of children. Research also has demonstrated that Black and Latinx youth caregivers, especially girls and girl-identifying youth, face greater negative effects from caregiving, particularly since the COVID-19 pandemic.

Caregiving Never a Priority in the U.S.

Our society has traditionally devalued family caregiving: in prior centuries, care tasks were relegated to enslaved Black women and girls, then in the modern era to poor Black and Brown women as domestic workers. In today’s discourse on the care infrastructure and the care economy, we rightfully raise the clarion call about the need for paid leave, child tax credits and the need to reduce astronomical childcare costs.

‘Black and Latinx youth caregivers, especially girls and girl-identifying youth, face greater negative effects from caregiving, particularly since the COVID-19 pandemic.’

Yet, a pared back Build Back Better bill, as it is presently debated, will barely address those worthy issues, much less the state of affairs for youth caregivers. Children as caregivers are rarely mentioned when we talk about the $470 billion worth of care through the 37 billion hours of care provided by family caregivers. The old adage of “children should be seen, not heard” comes to mind—in the case of recognizing and supporting youth caregivers, our society neglects to see or hear the voices of children.

It is possible for our society to correct this course and fulfill our moral duty to ensure youth caregivers have thriving childhoods. I am heartened by efforts already made by the Elizabeth Dole Foundation, the Wounded Warrior Project, and the Biden Administration’s Joining Forces program, to launch the Hidden Helpers Coalition, an initiative featuring more than 60 national organizations pledging to support the creation of new supportive programs for youth caregivers in military families.

Also on a federal level, the inclusion of a youth caregiver representative on the Family Caregiving Advisory Council could help to amplify the needs of youth caregivers by providing direct recommendations to Congress. The Caregiving Youth Project in Boca Raton, Fla., led by the American Association of Caregiving Youth, is one intervention that has been shown to positively impact youth caregivers in school. With support from the Department of Education, this project could be replicated across every school district in the country.

As ASA members, we can serve as change agents for youth caregivers. As we advocate for long-term care solutions, particularly those that encourage aging in place, we should consider initiatives such as PACE, the Program of All-Inclusive Care for the Elderly—and how children living at home with older parents or grandparents may be functioning as invisible, overlooked caregivers. Children should be seen as experts in the care of their family members and given an opportunity to voice their own needs, concerns and wishes.

We can also emphasize the beauty of collective, mutual care in multigenerational families, rather than reinforcing the decline narrative of aging. This is a part of our ASA mission to prioritize equity, health and well-being and justice. United together, we can strengthen our approach to caregiving—care that is good, just and valuable across all ages.

Feylyn Lewis, PhD, is the manager of the Students for Health Equity program in the School of Nursing at Vanderbilt University in her hometown of Nashville, Tenn., and as mentioned above she has cared for her disabled mother since she was a child, an experience that led her to research the lives of young caregivers in the United States, U.K. and Europe.

Photo: Author Feylyn Lewis, right, with her mother, Darline Lewis, and brother, Ferrell Lewis, in July 2021. 

Photo courtesy of Feylyn Lewis.