Time to Recognize and Support Emerging Adult Caregivers in Public Health

According to the 2020 iteration of “Caregiving in the United States,” an estimated 53 million, or one in five, adults are informal or family caregivers. These individuals have provided care for an adult or child with special needs in the past year.¹

For emerging adults, aged 18 to 25 years, caregiving may represent a nonnormative life-course experience that presents challenges beyond expectation or preparation.² Developmentally, emerging adults are beginning to form life plans, including career and educational trajectories, significant relationships, and choices related to childbearing. They may lack firsthand or have limited experience caring for someone with a serious or life-limiting illness.³ Unlike their noncaregiving peer counterparts, they often face the additional time constraints of needing to care for an ill household member while maintaining household functioning.⁴ Peers may have other priorities and may be ill-equipped to provide important dimensions of social support—emotional, logistical, informational, and companionship—critical to helping emerging adult caregivers function and cope.³ Thus, caregiving for emerging adulthood can be a confusing, taxing, and socially isolating experience that does not always resemble caregiving at other life stages.

In this issue of AJPH, Grenard et al. (p. 1853) leveraged the largest population-based data source of US caregivers, the Behavioral Risk Factor Surveillance System (BRFSS), to study emerging adult caregiving. The BRFSS data resource is an annual state-based nationwide survey of health behaviors and health outcomes. It has contained an optional module to assess caregiving experiences since 2009. The study used data from 2015 to 2017 to compare health risk behaviors and outcomes among three self-defined populations: recent (past 12 months) caregivers, expectant caregivers (those anticipating needing to be a caregiver within the next 2 years), and noncaregivers. Caregiver health outcomes included current alcohol use (both binge drinking and heavy drinking), current cigarette smoking and e-cigarette use, and previous-month frequent mental distress (measured by the unhealthy days measure, cut at 14 days or more).

The authors found significantly higher prevalence of frequent mental distress in current caregivers (20.8%) than in both expectant caregivers (13.5%) and noncaregivers (12.8%). The study also showed significantly higher prevalence of current cigarette smoking rates (20.2%) compared with noncaregivers (12.8%) but not expectant caregivers (17.6%). Further analyses reported higher distress among caregivers providing personal assistance to their care recipient, a proxy for assistance with activities of daily living. Drinking behaviors and e-cigarette use did not differ significantly among the three groups. Taken together, these findings suggest the possibility of unmanaged stressors and problematic coping mechanisms in this age-specific caregiver population.

The study did not compare experiences of emerging adult caregivers to those of older caregivers, and certainly some stressors of caregiving across the life course are shared. However, the experience of being a caregiver at this age is less common than at older ages,⁵ and there are fewer narratives about caregiving in popular culture in emerging adulthood than those in middle adulthood.⁴ This can create a mismatch about expectation and experience, leading to role conflict and loneliness. Caregiving responsibilities, which can be challenging, burdensome, and stressful at any age, present for emerging adults against a developmental stage characterized by residential mobility, career transition, and ambiguity about independence.² The lack of a supportive infrastructure often creates demand for emerging adult caregivers to take on this role in the first place, speaking to the need for a public health perspective.⁴ In addition, while caregivers fill an essential void, becoming a caregiver at such a young age may have a negative impact on educational, career, and relationship trajectories at a critical developmental life stage. Thus, strategies to prepare and support emerging adult caregivers congruent with the realities of their life stage are warranted.

Regarding the possible link between coping styles and health behaviors to manage stress, another study of caregivers reported revealing findings about associations with smoking. Litzelman et al. analyzed survey results of colorectal and lung cancer caregivers and found that current smokers were more likely to report dysfunctional coping, a scale that measures behavioral disengagement, denial, self-distraction, self-blame, substance use, and venting.⁶ Health behaviors are often linked to coping styles and may increase in particularly stressful situations. Encouraging health-promoting behaviors, such as exercise and socialization, to replace adverse health behaviors, like smoking, may help regulate stress responses. At the same time, boosting functional coping mechanisms (e.g., problem-focused coping) may simultaneously help to increase healthier behaviors.

Regarding the prevalence of frequent mental distress reported by Grenard et al., caregiving often takes a toll on mental health, and emerging adults are no exception. Higher symptom levels of depression and anxiety among emerging adult caregivers versus age-matched controls have also been demonstrated in other campus-based undergraduate studies.⁷ The unique burdens and often lack of support, recognition, and preparation of caregivers likely exacerbate the existing stressors of witnessing a loved one suffer through health problems.

FAMILY CAREGIVING AS A PUBLIC HEALTH PROBLEM

Growing national attention on caregiving as a public health problem and priority is shifting conversations about how we value care work and provide support to caregivers. The unique needs of emerging adult caregivers need to be considered in the national conversation about caregiving. To what extent is caregiving a public health problem? Recent legislation suggests that caregiving is being perceived with national interest. The Recognize, Assist, Include, Support, and Engage Family Caregivers Act (Pub L No. 115–119) became law on January 22, 2018, and charged the US Secretary of Health and Human Services to develop a national family caregiving strategy. It remains unclear how much this legislation will lead to increases in federal funding, given only minor increases in and low initial budget allocation over the past few years. The current COVID-19 pandemic continues to reveal the extent to which our societal infrastructure relies on unpaid family caregivers to keep tending to our most vulnerable members. Efforts to expand and tailor resources toward caregivers need to be informed by patients and caregivers of multiple dimensions, including caregivers of all age groups, given unique needs across the life course.

AGE-APPROPRIATE CAREGIVER INTERVENTIONS

Interventions have been developed and increasingly evaluated for dissemination and implementation, though few have been developed with emerging adults as the target population. The growth in recognition of adolescent and young adult cancer patient populations as having distinct psychosocial needs from both children and older adults suggests a possible path forward for considering emerging adult caregivers as a population in need of recognition, study, support, and advocacy. A comprehensive and sustainable acknowledgment of these needs requires multisector, private, public, and community-based approaches.

GROWING DEMAND AND RELIANCE ON FAMILY CAREGIVERS

Finally, as mentioned in Grenard et al., as the population ages and experiences a higher prevalence of chronic conditions, the need for caregivers will continue to increase while availability of caregivers aged 45 to 64 years continues to decrease. This demographic shift will place higher demand and expectation on younger caregivers as they are called upon to support the health needs of the oldest members of our society. We need to recognize and support emerging adult caregivers, and we need to examine current policies, cultural narratives, and norms around family caregiving.