Caregiving Youth: A Call to Action for Improved Support

Opinion
Article

A systematic approach to understanding the needs of the caregiving youth—a growing and less-studied population of caregivers—is needed to better tailor interventions, provide support, and improve care to patients and their families.

Jacob Zwerling, Roslyn High School class of 2024

Jacob Zwerling

The COVID-19 pandemic provided insight into gaps in programming across generations concerning mental health and well-being. As a preteen during the pandemic, an increase in household responsibilities, such as caring for loved ones was extremely stressful—especially in New York, where access to support services was ever-changing because of stay-at-home orders, fear of the virus, and the changing landscape of education. Policy decisions have not kept up with these shifts, and caregivers under the age of 18 years have been left out of much-needed legislation, formal support programming, and respite even in this postpandemic world.1-3 Reflecting on this notable absence is an understanding to have our faith-based organizations be a catalyst for change and work with governmental agencies, and private and public center organizations to increase resources for teenagers caring for loved ones with chronic disease.

The rates of dementia and chronic disease are on the rise, especially in marginalized communities. In addition, around the world, there has been an increase in multigenerational households where teens play a pivotal role in caregiving—a fact highlighted by the pandemic.1,2 Keeping with the situation in New York, the state has programs that support caregivers that might be family under the Consumer Directed Personal Assistance Program (CDPAP), a program that empowers families; however, it is directed only to those older than 18 years. A large step into recognizing the heterogeneity of caregiving and the need to support different caregivers is outlined in the National Strategy to Support Family Caregivers.4 The strategy here is that local, state, and nonprofit organizations will be aligned to direct recommendations to the federal government. This is an incredible coordinated effort, but again, the caregiving youth is often left out of the data for a variety of reasons. The largest study looked at young adult caregivers, including those ages 18 to 25 years, but still does not touch upon our need to be recognized and supported by policy and clinical management alike. Larger studies are needed to understand the nuances of being a youth caregiver, especially in the areas of mental well-being.

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This issue has directly affected the youth of days past and continues to plague the youth of today, who are increasingly living in multigenerational homes. Data from a 2020 report on caregiving in the United States from the National Alliance for Caregiving and AARP showed a 4% increase since 2015 in the percentage of Americans caring for someone with Alzheimer disease.5 The report also estimated that in total, 5.3 million caregivers are grandchildren, representing 8% of all caregivers over 18 years of age—and many of these individuals begin their caregiving journey earlier. In Florida's Youth Risk Behavior Survey in 2021, which included more than 10,000 adolescents, data showed that 24% of middle schoolers and 16% of high schoolers self-reported some caregiving at least every week, with the pandemic adding additional burden on these youth to provide care for their grandparents.6

How many of you, as teenagers, provided support to your loved ones— your grandmother or grandfather, or maybe a parent—in the form of general support, social respite, meal delivery, transportation accompaniment, or technology support? How many have seen the same among the families of patients you provide care for? Have you, or they, been embarrassed to share frustrations with their friends about how difficult it was to bathe and dress their loved ones in order to attend an event? Many of these caregiving youth are juggling all of this while struggling—especially during the height of the pandemic and in this postpandemic world—to keep up with schoolwork, sports, and part-time jobs.

The Label of ‘Caregiver’

By Rebecca Whitney

For all the brightest, breathtaking moments of joy and laughter, they are there. For the darkest times, in the middle of angst, uncertainty, and strain, they are there. For the 3 AM sudden wakeups requiring a trip to the emergency room, through piercing screams or silent tears, or the clinic appointments inconveniently scheduled in the middle of a workday, regardless of the time or place, they are there. The label of ‘caregiver’ may seem all-encompassing, but the role it describes extends so far beyond what may initially come to mind.

We, the caregiving youth, have been absent from many policy decisions despite having been, according to Elizabeth Olsen, PhD,7 “the largest volunteer life-saving corps in the world” for many years. The need for improved and accessible support services for adolescent and teenage caregivers is huge. Research has shown that the frequency and level of intensity of caring for loved ones as a youth is related to higher levels of developmental risk in many domains including—social, physical health, and academics.2,8,9

A systematic approach to understanding the needs of the caregiving youth is needed to tailor interventions. Utilizing faith-based organizations as a coordinated approach is one way to help us feel understood and share the best strategies.8 From the clinician's perspective, utilizing patient interviews to understand who constitutes the caregiver is crucial. Many teenagers are caring for adults with chronic diseases. Recognizing fellow caregiver champions who are teenagers and linking them with support will contribute to sustaining this so-called ‘volunteer health corps.’ There are many helpful organizations to support young caregivers, but a framework to direct them to them is sorely lacking.

Online links to resources for teen caregivers

REFERENCES
1. Kates J, Pogorzelska-Maziarz M, Uppal M, Gerolamo AM. The impact of dementia family caregiving on adolescent well-being: A scoping review. Dementia (London). 2023;22(4):910-928. doi:10.1177/14713012231161385
2. Armstrong-Carter E, Siskowski C, Belkowitz J, Johnson C, Olson E. Child and adolescent caregiving for family: Emotional, social, physical, and academic risk and individual differences. J Fam Psychol. 2022;36(8):1407-1417. doi:10.1037/fam0000969
3. Armstrong‐Carter E, Johnson C, Belkowitz J, Siskowski C, Olson E. The United States should recognize and support caregiving youth. Soc Policy Report. 2021;34(2):1–24. doi:10.1002/sop2.14
4. 2022 National Strategy to Support Family Caregivers. Administration for Community Living. Updated January 5, 2024. Accessed January 23, 2024. https://acl.gov/CaregiverStrategy
5. Caregiving in the US: 2020. National Alliance for Caregiving and AARP. 2020. Accessed January 23, 2024. https://www.aarp.org/content/dam/aarp/ppi/2020/05/infographic-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.002.pdf
6. High School Students Who Provide Care For Someone in Their Family or Household Who is Chronically Ill, Elderly, or Disabled With Activities They Would Have Difficulty Doing on Their Own (HS-YRBS). 2021. Accessed January 23, 2024. https://www.flhealthcharts.gov/ChartsDashboards/rdPage.aspx?rdReport=SurveyData.YRBS.HSDataviewer
7. Olson, E. The largest volunteer life saving corps in the world’: Centering child caregiving in histories of US human security through the Little Mothers’ League. Soc Cult Geog. 2017;20(4):445-464. doi:10.1080/14649365.2017.1362585
8. Britt KC, Cacchione PZ, Naylor MD. Faith-based organizations can support dementia caregivers in a post-pandemic world. Res Nurs Health. 2023;46(3):282-284. doi:10.1002/nur.22309
9. Levine C, Hunt GG, Halper D, Hart AY, Lautz J, Gould DA. Young adult caregivers: a first look at an unstudied population. Am J Public Health. 2005;95(11):2071-5. doi:10.2105/AJPH.2005.067702
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