Unpaid Family Caregiving

By Nathan M. Stall, MD, PhD; Nirav R. Shah, MD, MPH; Devika Bhushan, MD

Every day, millions provide unpaid care for a family member or friend.¹ The COVID-19 pandemic accelerated this crisis of care, with millions more people now reliant on unpaid caregiving and 40 percent of caregivers increasing the number of hours of care they provide. This increase was felt especially acutely by Black caregivers.²

The burden of unpaid care needs continues to disproportionately fall on women, with devastating effects on health, well-being, and labor force participation. But like so many other inequities laid bare by the pandemic, the gendered division of family caregiving is not new, merely now exposed and exacerbated.

A neglected and gendered dimension of family life

Worldwide, deep-rooted norms result in family caregiving still being widely perceived as so-called women’s work.³ These gender norms include women being seen as intrinsically more nurturing, sensitive, and altruistic. Sociocultural experiences starting in childhood, including play and role-modeling, create and reinforce these norms, socializing women into caretaking roles.³

In contrast, deeply held gender norms about masculinity—often defined in opposition to femininity—create barriers for men to act as caregivers.³ Accordingly, U.S. women provide 2.2 times more unpaid family caregiving on a time-per-day basis than men.⁴

Over the last half-century, society has made some—albeit inadequate—gains in tackling the gendered divisions of childcare and housework. However, the gender imbalance in the third dimension of family life, unpaid caregiving, remains relatively uncontested.⁴

Modern family caregiving: Complex care without adequate training or support

While family caregivers traditionally provided emotional and basic support with household tasks and personal care, an increase in home-based health care needs now sees unpaid caregivers expected to assume more complex roles with little to no training or support.^1,5 More than half of all caregivers perform medical tasks typically done by healthcare workers like nurses, pharmacists, or respiratory therapists.⁶

Family caregivers are also expected to help navigate complicated health care and social service systems, understand and track complex health information, and serve as surrogate care coordinators, advocates, and decision-makers.¹

Do health reforms institutionalize the marginalization of women?

Current healthcare reforms, including value-based and accountable care, increasingly decentralize care from inpatient settings toward the home and community. These shifts are based on the implicit assumption that family caregivers—the majority of whom are women—will provide this increasingly complex care at home without additional support.⁷

Family caregivers provide approximately 80 percent of direct home-based and community-based care services, with unpaid contributions valued at $600 billion U.S. dollars annually (2021),^1,2,7 more than all out-of-pocket healthcare costs ($433 billion, 2021, CDC).

Yet family caregivers are largely socially and politically invisible, and their genuine and necessary labor lies outside the market economy.⁷

The burdens of caregiving are disproportionately experienced by women

While caregiving can be personally rewarding, for many, it can create a cumulative physical and psychological strain that is health-damaging.¹ Compared with non-caregivers, family caregivers, especially women, experience increased emotional distress, depression, anxiety, and social isolation; impaired physical health; decreased preventive and self-care behaviors; greater acute care use; and even increased mortality.^1,6

Sixty percent of caregivers are juggling unpaid caregiving with paid job responsibilities. Many are forced to cut back on their work hours, take leaves of absence, or exit the workforce altogether.⁶ These disruptions in employment, exacerbated by the COVID-19 pandemic, reduce family caregivers’ income, Social Security benefits, and other retirement benefits, resulting in caregiver financial insecurity and an estimated productivity loss of $30 billion to the U.S. economy annually.¹

Caregiving Essential Reads

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Supporting caregivers requires comprehensive policy interventions and opposition to gendered norms

The 2016 Families Caring for an Aging America report and the 2022 National Strategy to Support Family Caregivers recognize that caregiving occurs within a multifaceted context and recommend that interventions be directed at the caregiver, workplace, healthcare organization, and societal levels.^1,8 Successful implementation of these policy interventions will also require a gender-based lens, which challenges gendered norms that treat women as the expected and primary caregivers and men as secondary caregivers.³

Caregiver-level interventions

Effective caregiver interventions are generally multidimensional and include problem-solving, skills training, support groups, counseling, family therapy, and respite.⁶

Since caregiving is often viewed as a natural part of women’s work, women caregivers are both less likely to receive assistance from family and friends, and to use external caregiving services and support.⁹

As such, female caregivers may need a higher intensity of caregiver support, and specific outreach efforts to ensure acceptability and accessibility.

In April 2023, the U.S. Biden-Harris Administration announced a set of executive orders focused on caregiving, including increased respite care, more support during the discharge planning process, and expanded mental health support.¹⁰

Workplace and health systems-level interventions

Caregiver-friendly workplace policies can help men and women manage their caregiving responsibilities without compromising financial security or career advancement. These policies include flexible working hours and arrangements, topping up and extending publicly available family leave benefits, and employee assistance programs that involve support groups, counseling, and skills workshops.⁸

There is also a pressing need for reforms to public and private health insurance plans that largely exclude family caregivers from receiving direct services or financial and other supports—which are limited to the person directly receiving care—despite the well-documented health effects of family caregiving.⁷ This is detrimental to both patient and caregiver health.

Societal-level interventions

While healthcare movements, such as person-centered and family-centered care, have raised the profile of family caregiving, there remains a need for much greater awareness about the intensity and complexity of roles that caregivers assume and their challenges.^1,6-8

The National Strategy to Support Family Caregivers calls for a national and culturally competent awareness campaign.⁸ This would be strengthened by including a focus on the gendered aspects of family caregiving, such that policymakers and the public would understand the inherent risks to women’s self-determination, health, and financial security posed by policies that promote and rely heavily on unpaid family caregivers, the majority of whom are women.⁷

The U.S. is unique among its economic peers in lacking universal and robust provisions for paid family leave. The 1993 Family and Medical Leave Act guarantees just 12 weeks of unpaid job-protected leave to care for a parent, spouse, or child with a serious health condition, and this is only available to 60 percent of caregivers in the workforce.

A national paid family leave program that uses the broadest possible definition of family for eligibility would help ensure that equity-deserving groups—including women—could best benefit from such a program.⁸ Family caregivers could be further financially protected by allowing them to accrue Social Security credits while on caregiving leave and by offering refundable tax credits for caregiving-related expenses.^1,7

Finally, the COVID-19 pandemic has accelerated the need for long-term care financing reform.

Currently, more than half of all long-term care costs in the U.S. are paid out-of-pocket. When this is not affordable, family caregivers often assume financial and direct care responsibilities.

The National Strategy to Support Family Caregivers advocates for a national public long-term care social insurance program that includes benefits for caregivers. This would guarantee coverage of a flexible set of goods and services—including home care, meals, and equipment—necessary for community-based care.⁸

Conclusions

The COVID-19 pandemic has spotlighted the critical role of unpaid family caregiving and how women disproportionately assume these responsibilities and bear the physical, mental, and financial consequences of doing so. Challenging this gendered dimension of family life is essential to support all caregivers better (including men and nonbinary individuals who are caregivers), ensuring that caregiver interventions are equitably implemented, and creating a more just and resilient society.

This post also appears at JAMA Health Forum.