What we know about children and youth caregivers in the US

Melinda S. Kavanaugh, PhD, LCSW
Professor, Social work

Helen Bader School of Social Welfare

President, Global Neuro YCare

Over 25 years ago, as a clinical social worker, I met for the first time a child who assisted in the care of a parent with a neurological condition. I had no frame of reference. There were no programs, and little, if any, research. That child imprinted on me and has guided me ever since 

“Young caregivers”, or “caregiving youth” have remained on the fringes of federal and state caregiving policy for years. The literature is growing, despite the uphill battle faced by many researchers in bringing young caregiver voices to light. Every time an article or news print comes out, we hold our collective breath, thinking this will be the one to truly crack open the gates and have the federal government pay attention. Such was the case when the GAO reached out to us young caregiving researchers and program leads. The report accurately told the story of young caregivers in school settings, describing these students and sharing impacts to school performance and attendance. 

Outside of schools, the report missed the mark. 

Given one of the primary objectives of the report was “to present information on caregiving youth in the U.S.”, the final report relies heavily on data they collected from a small sample (n=43) of young adult caregivers, while almost completely ignoring the over 35 peer-reviewed, published research, described in previous reviews of young caregiver literature^1,2. 

This report does not reflect the large and complex young caregiver data, including crucial views of parents and grandparents – and those youth who care for a sibling with chronic, complex illness. Further, it ignores the numerous health care, disease based, and critically – military connected and veteran organizations, who work with, care for, and develop programs for young caregivers across the U.S.

Young caregivers are not found in one setting, nor are they a monolith. A child who cares for a grandfather with Alzheimer’s, is not the same as a teen who cares for their mother with ALS or a young child who cares for their veteran parent with PTSD. The nuanced data from the literature and existing programs explores these differences and has been used to guide targeted, scalable programs and services for young caregivers across the US. Thus, the absence of this data in the GAO report is striking.

Additionally, the report inaccurately states the evidence on the impact of care is “anecdotal.” Here is what the report missed about young caregivers: They struggle with sleep ^3,4 and are truant from school, both due to care⁵. They want to talk about death and dying with their family members, but don’t know how⁶. Their families worry about disclosing too much for fear of child removal, understandable given many states still have laws about TPR and disability⁷. Young caregivers are deeply involved in care for grandparents, heightened during COVID lockdowns^8,9. They help care for siblings on the Autism spectrum¹⁰. They guide their veteran parent through crowds to avoid PTSD triggers,¹¹ and care for spinal cord injuries. They fiercely love their family members, but want support and acknowledgment in the care¹².  They have almost no guidance in care they provide, yet when provided multidisciplinary, peer-engaged, care skills education, their confidence increases.¹³

Young caregiver researchers and organizations have worked hard over the years to develop programming and research, commensurate with adult caregivers, including the research based YCare program, a peer engaged, caregiving skills and education program for young caregivers across illness/injury¹⁴; online peer support groups for early onset dementia young caregivers¹⁵, community based education for children and grandchildren young caregivers¹⁶ and the numerous programs and supports for military connected and veteran youth, “hidden helpers” ¹⁷. The GAO report, by not including these programs, missed an opportunity to use them to inform state and federal caregiving programs, including those within HHS, building out best practices for young caregivers across settings.

Some programs are taking notice. The National Academies of Sciences, Engineering and Medicine has included young caregivers for the first time in their June 2025 meeting, “Strategies and Interventions to Strengthen Support for Family Caregiving and to Alleviate Caregiver Burden: A Workshop”. As an invited presenter, I am honored to share their stories, discuss programs and underscore the need for more federal support – across all young caregivers. 

In a changing world, with fewer and fewer caregiving resources, we cannot miss any opportunity to double down and force a more complete and nuanced portrayal of all caregivers – integrating young caregivers. This collective push is critical to informing the much needed policy and societal changes for all caregivers in the United States.

1. Kavanaugh, MS., Stamaopoulos, V., Cohen, D., & Zhang, L. (2015). Unacknowledged                                  Caregivers: A Scoping Review of Research on Caregiving Youth in the United States.                                Adolescent Research Review, 1(1), 29-49.
2. Hendricks, B.A., Kavanaugh, M.S. & Bakitas, M.A. (2021). How far have we come? An updated scoping review of young carers in the U.S. Child and Adolescent Social Work Journal. https://doi.org/10.1007/s10560-021-00783-8
3. Kavanaugh, MS. (2014). Children and adolescents providing care to a parent with Huntington’s disease: Disease symptoms, caregiving tasks and young carer well-being. Child and Youth Care Forum, 43(6), 675-690
4. Kavanaugh, M. S., Zawadzki, M. J., Johnson, K. T., & Boville, M. R. (2025). Moments of Care: Perceptions of Young Carers and Day-to-Day Well-Being. Healthcare, 13(3), 292. https://doi.org/10.3390/healthcare13030292
5. Kavanaugh, MS., Johnson, KT., Zawadski, M. (2021). Variations and patterns in sleep: A feasibility study of young carers in families with ALS. Journal of Clinical Medicine 2021, 10, x. https://doi.org/10.3390/xxxxx
6. Armstrong-Carter E, Siskowski C, Belkowitz J, et al. Child and adolescent caregiving for family: Emotional, social, physical, and academic risk and individual differences. J Fam Psychol 2022;36:1407e17.
7. Kavanaugh, MS, Noh, HJ, & Zhang, L (2016). Caregiving youth knowledge and perceptions of parental EOL wishes in Huntington’s disease. Journal of Social Work and End of Life care, 12, 348–365
8. Kalvesmaki, A. F., Miller, K. E., Armstrong-Carter, E., Lewis, F., Shih, R. A., Olson, E., & Kavanaugh, M. S. (2024). The challenge of identifying young carers in the US: how state laws put families at risk for separation. International Journal of Care and Caring, 9(1), 188-195
9. Hamill, S. B. (2012). Caring for grandparents with Alzheimer’s disease: Help from the “forgotten” generation. Journal of Family Issues, 33(9), 1195-1217.
10. Johnson, K., Kavanaugh, MS., Zerpa, V., Perez, S., and Castro.A (2023). “It’s Put a Lot of Responsibility on Me to Make Sure That She’s Being Taken Care of”: Latino and African American Young Carers of Family with Dementia during the COVID-19 Pandemic. International Journal or Health and Society. DOI: https://doi.org/10.18848/2156-8960/CGP/v13i02/93-109
11. Nuttall, A. K., Coberly, B., & Diesel, S. J. (2018). Childhood caregiving roles, perceptions of benefits, and future caregiving intentions among typically developing adult siblings of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 1199-1209.
12. Ramchand, R., Dalton, S., Dubowitz, T., Hyde, K., Malika, N., Morral, A. R., … & Williams, K. M. (2024). America’s Military and Veteran Caregivers: Hidden Heroes Emerging from the Shadows. Rand Health Quarterly, 12(1), 7.
13. Kavanaugh, MS., Cho, Y., Banker-Horner, L., Barkhaus, PB. (2020). Skill, confidence, and support: Conceptual elements of a child/youth caregiver training program in ALS (YCare). Neurodegenerative Disease Management Aug;10(4):231-241
14. www.globalneuroycare.org
15. https://lorenzoshouse.org/
16. https://www.csusm.edu/youthcaregivers/index.html