Informal Caregiving During the COVID-19 Pandemic in the US: Background, Challenges, and Opportunities

There is a critical need to protect the health and quality of life of the approximately 41 million informal caregivers in the United States (US).¹ Informal caregivers provide unpaid care and assistance to friends or family members in need of care; typically an older adult such as a parent or spouse with cognitive decline, a disability, or chronic health issues.² Informal caregivers support the millions of older adults aging in place and allow older adults to remain in their homes, and are an integral component of the US healthcare system. A recent study using nationally representative data from the National Health and Aging Trends Study estimated that caregivers in the US provide over 15 billion hours of care annually.³ However, the economic value of informal caregiving is challenging to quantify since its scope lies outside the market economy and is often not quantified.⁴ The best approximation of the cost of replacing informal caregiving in the US with paid, formal caregiving, including skilled and unskilled labor and/or institutionalization of older adults, is between $221 and $642 billion annually.⁵

Several population-based studies have identified notable benefits associated with informal caregiving for the caregiver, such as reduced overall mortality^6,7 as well as distinct mental health benefits, including a sense of giving back, an increased sense of meaning and purpose. Informal caregivers also report satisfaction from modeling caregiving, with the idea that by showing their children the importance of caregiving, those children will provide care to them if needed.⁸ However, informal caregiving has been shown to negatively impact informal caregivers’ health, well‐being, and financial stability.⁸ Large national and international studies suggest that caregiving, especially high-intensity caregiving with respect to hours and duties performed, is associated with an increased risk of depression^9-12 and other mental health issues such as caregiver burnout,¹³ poorer overall health,^14-15 and a reduction in preventive health behaviors.¹⁶ Informal caregivers also experience lower rates of social participation¹⁷ and greater social isolation and loneliness than non-caregivers.^18-20 Employed caregivers face additional challenges. The time required for informal caregiving may interfere with their ability to work for pay, meaning that employed informal caregivers often need to provide care at the expense of time and income that would have been earned from paid work.¹⁴ The need to sacrifice work and work-related obligations due to informal caregiving responsibilities disproportionately impact female caregivers.²¹ Relatedly, informal caregiving can result in financial strain for the caregivers and their families.^22-24 For example, among caregivers to persons with dementia, the economic burden of dementia on families manifests directly through time spent caregiving and high out-of-pocket costs often extended over many years.²⁵

There is a critical and timely need to fully understand and address the health, quality of life, social, and financial needs of informal caregivers to protect and improve these and other elements in their life. Over the next several decades, the number of informal caregivers is expected to grow, not only in the US but globally, due to continuing demographic trends toward increasing proportions of older adults in the population, and an increasing share of those older adults in worse health, necessitating care.^14,23 Based on recent trends, the demand for informal caregivers will likely increase due to increased survival among people with disabilities,²⁶ and earlier onset of disability necessitating care.²⁷

Further complicating the need to protect caregiver health are inequities in informal caregiving in the US. There are critical racial/ethnic, gender, socioeconomic, and geographic disparities concerning who becomes a caregiver, and among caregivers themselves, the distribution and intensity of caregiving duties performed, and caregiver burden.²⁸ Caregiver burden is generally defined as the extent to which caregiving responsibilities adversely affect emotional, social, financial, and physical functioning.²⁹ Racial/ethnic disparities occur both in caregiving responsibilities and the resultant caregiver burden and strain. For instance, it is well established that females are more likely than males to serve as informal caregivers, and among informal caregivers, females provide higher intensity care than males.^21,30,31 Although Black caregivers and caregivers of other races/ethnicities provide more care than White caregivers,³² they report less strain and burden from their caregiving responsibilities than their White counterparts.³³ Latin/x informal caregivers are more likely than White caregivers to experience unmet need with respect to caregiving and are more likely to have received supplemental support from formal, paid caregivers.³⁴ Notable differences in informal caregiving exist by geography, as well. For instance, compared to caregivers living in urban or suburban areas, caregivers in rural areas face the additional challenges of reduced social support, greater geographic isolation, lower socioeconomic status, reduced access to formal care services, and reduced access to workplace caregiving supports and favorable policies designed to ease the health and financial burdens of informal caregiving.³⁵

The COVID-19 pandemic has complicated the practice of informal caregiving in several unique ways. COVID-19 was first diagnosed in 2019 in Wuhan Province in China and spread rapidly across the globe in weeks. The virus is especially dangerous to older adults because mortality was highest in older individuals, especially those with comorbidities and chronic conditions.³⁶ The case-fatality rates from COVID-19 in adults age 80 and above is nearly 100 times higher compared to those below age 30 and over 10 times higher than those age 50-59.³⁷

Health policies and mandates designed to slow the spread of COVID-19, such as social distancing, quarantining, and physical isolation complicated informal caregiving and imparted additional challenges. Informal caregivers may rely on the support of additional volunteer services and social care to fulfill their caregiving responsibilities that were halted when these policies were implemented.³⁸ Informal caregivers may have been unable to provide care due to having COVID-19, fear of contracting COVID-19, or time in quarantine, which has occurred in other countries during previous pandemics if the caregiver does not live with the care recipient.³⁹ Many informal caregivers provide care and assistance to residents of nursing homes and assisted care facilities as a supplement to the formal care services the care the recipient receives. For the safety and protection of all vulnerable older adults, such policies also affected formal care services, such as nursing homes and assisted living facilities. These include the prohibition of outside visitors to many sites, as well as physical isolation of the patients and residents from each other to reduce the spread of COVID-19 among such facilities.⁴⁰ Policies implemented to protect the health of all residents were associated with increased caregiver burden,⁴¹ particularly early in the pandemic when these policies were implemented with little time to prepare.

We conducted a cross-sectional study of 835 informal caregivers in the US and assessed changes in caregiving intensity and the resultant caregiver burden due to the pandemic. The majority reported experiencing increases in caregiving intensity (55.7%) and caregiver burden (53.1%).⁴² A closer examination of the data found that, as in caregiving experiences outside of the pandemic, there were notable differences by gender. Women were more likely than men to experience increases in both aspects of caregiving during the pandemic,⁴² which reflects overall patterns of females shouldering a disproportionate amount of both caregiving responsibilities and impacts on their health and well-being.

Other studies found similar results. For example, a recent qualitative study found that caregivers are reporting added challenges of caregiving during the pandemic, which included keeping connected with the care recipient and social supports, keeping care recipients occupied despite reduced social stimulation, and seeking support and services in new ways, primarily through technology.⁴³ However, not all informal caregivers had the financial and technological capabilities of seeking additional supports, which presents the potential for COVID-19 to widen further existing gender, racial/ethnic, socioeconomic, and geographic disparities among informal caregivers. A study comparing the experiences of rural caregivers to urban and suburban caregivers during the pandemic found that rural caregivers were more than twice as likely to report a substantial increase in caregiver burden due to COVID-19 than urban caregivers.⁴⁴ The same study found that caregivers who were diagnosed with COVID-19 and those who lived with their care recipient were also more likely to observe increased caregiver burden during the pandemic. A European study found that caregiving responsibilities did not change during the pandemic, but the differences between informal caregivers and non-caregivers in mental health and well-being did change.⁴⁵ Although existing evidence is somewhat inconsistent, the limited studies on informal caregiving during the pandemic suggest that the pandemic had a net negative impact on the health and quality of life of informal caregivers, and that impact varied by numerous sociodemographic factors.

Irrespective of the COVID-19 pandemic, creating and implementing effective health policies to address informal caregiver needs is critical to protecting this key component of the healthcare system. There are a number of existing programs at the federal, state, and local levels. Many of these programs assist those receiving care with covering the costs of a paid caregiver, which may provide an important respite for the informal caregiver. The Medicaid Self-Directed Program allows qualified individuals in some states to hire family members as caregivers.⁴⁶ Some long-term care insurance plans enable family members to receive compensation for their caregiving; however, these policies may exclude coverage for caregivers who reside with the person receiving care.⁴⁷ Furthermore, the baseline cost and annual increases in premiums of these plans to the caregiver, especially for caregivers of lower socioeconomic status, can be cost prohibitive. There are also programs to help cover the expense of hiring paid caregivers for veterans, such as the Veteran-Directed Home and Community-Based Services and Aid and Attendance benefits.⁴⁷ Other programs, such as Lifespan Respite Care Program and the National Family Caregiver Support program, are nationally available and provide grants to states and state agencies for caregiver respite assistance, assistance in accessing services, counseling, support groups, and caregiver training.^48,49

A number of federal policies have been enacted to support and assist caregivers. Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act requires the Secretary of Health and Human Services to develop, maintain, and update an integrated strategy to recognize and support family caregivers.⁵⁰ The Family Medical Leave Act (FMLA) provides up to 12 weeks of unpaid job-protected time off from work to care for a parent or spouse/domestic partner with a serious health condition. There is current legislation to make FMLA provide partial income for up to 12 weeks.^51,52 The Social Security Caregiver Credit Act is a benefit for caregivers who spend at least 80 hours per month providing care and provides a social security credit added to a person’s total career earnings.⁵³ Some policies focus on more specific demographics, such as the Alzheimer’s Caregiver Support Act, which provides grants to public and nonprofits to expand and improve training and support services for families and caregivers of individuals with Alzheimer’s disease.⁵⁴

The availability of caregiver programs also varies by state. Rhode Island, for example, provides Temporary Caregiver Insurance that offers up to 4 weeks of caregiver benefits to care for a seriously ill partner, spouse, parent, in-law, or grandparent.⁵⁵ Rhode Island also offers the Rhode Island CareBreaks Respite Services Program, which connects unpaid family caregivers with trained respite care professionals to provide breaks periodically.⁵⁶

However, although informal caregivers reside in all 50 states, states have approached the issue in terms of policy differently. As a result, there is significant variation among caregiver policies across the country because of a combination of factors that vary by locale, including environmental, political, contextual, and fiscal factors.⁵⁷ One example is the Medicaid Self-Directed Program described above. State variability in the implementation of this program exists not only with respect to which states actually participate in the program, but also among eligibility requirements for individuals to receive benefits in participating states.⁵⁸

Policies that are currently in legislation to benefit caregivers include the Credit for Caring Act, The Veterans’ Administration (VA) Mission Act, and, as previously noted, the amendment to FMLA.⁵¹ The Credit for Caring Act was introduced to the US Senate and House of Representatives on May 18; the bill would provide up to $5,000 federal tax credit for eligible working caregivers.⁵⁹ The VA Mission Act would expand benefits for caregivers of veterans.⁶⁰

The extant literature indicates that the COVID-19 pandemic is associated with changes in caregiving by informal caregivers providing care for older adults. The COVID-19 pandemic has shed new light on the complexities of caregiving, and the critical need to first acknowledge the population of 41 million informal caregivers providing an essential service to their families, the healthcare system, and the national economy, often to the detriment of their own physical and mental health and quality of life. It also has made evident racial/ethnic inequities and differences in access to care and the need for greater support systems for informal caregivers.

While policies and programs for caregivers are expanding, access to and knowledge about these programs could improve. With the US population continuing to age, necessitating more informal caregivers in the decades to come, a more unified, national approach is needed to ensure caregivers are afforded access to programs and services and support to enable them to be effective caregivers. In many of the existing health policies, there is an overarching assumption that family members will provide informal care to older relatives in need. Policies pertaining to long-term care have evolved in the context of an addendum to acute health care.²³ Existing policies on the federal, state, and local levels attempt to ease certain aspects of caregiver burden. However, these policies in the aggregate only address some aspects of caregiver burden and strain, and many are not universally available, as they depend upon factors such as place of residence, socioeconomic status, or other factors. Furthermore, although national policies are needed to create more equitable responses and provide resources to those who need them regardless of place of residence, it is important to keep in mind the inherent heterogeneity of the caregiver population in terms of demographics and caregiver needs. Therefore, any such policies, programs, and interventions developed must also be flexible to accommodate the needs and address the barriers caregivers face across all population subgroups of informal caregivers. Understanding and addressing those needs and the challenges of caregiving through a global pandemic disproportionately impacting older adults is fundamental to preparing for the changing caregiver needs during future pandemics and health crises.