How To Support Patients Who May Be Caregivers Too

For five years, providing full-time care for her older parents has been the daily routine for Donna. Her father recently died of cancer, and Donna still provides care for her mother as the dementia worsens, prioritizing caregiving over her own health care needs. Donna has delayed bone density scans for her osteoporosis and a colonoscopy despite her father dying of colorectal cancer. After suffering from fatigue and sleep deprivation, Donna recognizes that a physical exam is long overdue. While her brother is in town for a visit, Donna uses that time to schedule an appointment with her primary care nurse practitioner.

Patients May Also Be Caregivers

This case study is not exceptional in modern America and demonstrates the health issues that may be linked to increasing burdens of family caregiving. Yet, since family caregivers may not self-identify as such when seeking their own medical care, this source of stress is often overlooked. When a patient is also a caregiver, their own providers may be able to help address the potential negative physical and mental health effects of those responsibilities. Health care providers know that care is about the whole person—including their socioenvironmental context and family responsibilities—nonetheless, caregivers are vulnerable to being hidden in plain sight. Many patients may not self-identify as caregivers because no one has asked them if they are caring for someone else. Moreover, these roles can change over time.  

Modern Family Caregiving In The US

Today, more than one in five Americans have provided care to an adult or child with special needs at some point in the past 12 months. And many of them experience health problems related to their caregiving role. The number of family caregivers has increased over the past 12 years, and as the number of older Americans increases so will the demand for caregivers. Today, there are seven potential family caregivers per adult, but by 2030, there will be only four potential family caregivers per adult, causing the intensity of care provided by future caregivers to increase. This in turn will increase the likelihood of sole caregivers within family units. As more patients become caregivers, policies to support them are essential. We invite health care providers to assess their patients for caregiving responsibilities and—together with policy leaders and researchers—discuss strategies to advocate policies that support these “patient-caregivers” (hereafter, caregivers) (exhibit 1).

COVID-19 Sheds Light On Caregiving

We are just beginning to make sense of the impact of the COVID-19 pandemic on caregivers across the United States. The heterogeneous and persistent unmet needs of caregivers have been compounded by COVID-19’s disruption of more than half of family caregiving arrangements. Early shelter-in-place orders, for example, halted formal in-home care and community services such as respite and reduced access to assisted living and nursing home options. These disruptions increased caregiving responsibilities and were associated with depression, anxiety, and loneliness among caregivers. Data show that, since the beginning of the pandemic, 49.0 percent of unpaid adult caregivers—defined as family members, kinship linkages, partners, neighbors, and friends who provide care and support for individuals with serious illness or disability—report signs of COVID-19-related trauma- and stressor-related disorders, compared with 17.9 percent of non-caregivers. More than 30.0 percent reported to have suicidal thoughts compared with 3.7 percent of non-caregivers.

COVID-19 has also brought to our attention the emerging group of younger caregivers, who must carry a new and unexpected set of responsibilities to which few of their peers can relate. According to AARP, although one-third of family caregivers are ages 65 and older, nearly a quarter, or about 10 million people, are millennials born between 1980 and 1996. With the ongoing pandemic, younger Americans may be struggling with challenges related to financial burden, social isolation, or their own illnesses, in addition to the strain of a becoming caregiver sooner than expected. The pandemic has also seen thousands of people developing long COVID, another group of patients who will have to continue relying on caregivers.

Recommendations To Support Patients Who Are Also Caregivers

Exhibit 1: Strategies for how key stakeholders can advocate for policies that support patients who are caregivers

Source: Authors’ analysis.

Providers

With every clinical encounter, health care providers must first address the patient’s immediate health needs. Recognizing that caregivers are known to delay their own care, health care providers are instrumental in normalizing conversations about caregiving and its relationship with one’s overall health. To support the patients’ caregiving role and identify those at risk for caregiver burden, providers should validate patients’ experiences and encourage ongoing dialogue. This is especially important when it comes to patients who may not fit the typical caregiver profile, such as those who are younger, unpartnered, healthy, or without children. Older patients should also be informed that as Medicare beneficiaries they may be eligible to receive one free Medicare wellness visit per year—an opportunity for health care providers to assess the patient’s health and provide a plan of future care and prevention. Despite its benefits in identifying caregivers, the annual wellness visit is not yet well used. Fewer than 25 percent of Medicare beneficiaries receive an annual wellness visit, and the rate is even lower among beneficiaries from racially marginalized backgrounds. Health care providers may play a key role in helping patients become aware of social services and policies that can support their caregiving needs.

Health Care Systems

As large enterprises that benefit from unpaid work by caregivers, health care systems have a responsibility to increase public health messaging about caregiving and its impact on health. Health care systems can leverage technology to obtain accurate and more complete information about patients at every clinical encounter. The CARE Act, which has been enacted in more than 40 states and the District of Columbia, requires hospitals to record the names of caregivers of patients who are hospitalized. Similarly, health care systems should consider creating new data fields within electronic health records to document whether the patient is a caregiver.

However, simply asking patients about their caregiving role is not enough. Many individuals continue to fall through the cracks, especially those from minoritized and marginalized populations. Health care systems must equip patients with resources that optimize their capacity to provide care for others, while also receiving health services themselves. Strategies may include offering a focused response to their individual needs and social circumstances, including virtual medical visits, telehealth, same-day appointments, mobile screening programs, home visits, and lab and diagnostic facilities closer to home.

Policy

Individuals who care for others vastly contribute to the health care economy and should be able to count on supportive public policies. Yet, Medicare does not cover long-term services and supports, and few individuals have private coverage for these services, further contributing to caregiver burden. While there have been recent efforts at the national and state levels, more policy reform is needed to offset the caregiver burden and costs of providing care, including policies that promote coverage for home care aides, community living assistance, adult day care, and respite care. Policy leaders should seek to amplify the voices of caregivers and expand eligibility and equitable access to programs and services including institution-based financial assistance programs, community-based navigation, monetary support for caregivers, palliative care, hospice care, respite care, and long-term care coverage relying on need rather than prognosis. Developing policies that foster financial incentives (that is, reimbursable current procedural terminology (CPT) codes for delivering caregiver-targeted services and specific funds to establish a hospital-based caregiver clinic) in health care may be a solution to meet the intrinsic motivations of health system leaders while also supporting patients who are caregivers.

Research And Education

While health care providers have a responsibility to identify patients who are experiencing negative impacts on their health due to their caregiving role, many receive limited training on how to communicate with patients in such roles. The health care workforce should be taught how to recognize and respond to the socioenvironmental influences on one’s health, including caregiving responsibilities, as part of a holistic education. Principles of caregiving and its associated benefits and burdens are important concepts for health care providers to better understand and identify how to support caregivers. Curricula in pre-licensure programs should be modified with this goal in mind and so should continuing education, resource toolkits, and on-site clinical experiences. Every health care provider should be taught how to assess the caregiving status of their patients, identify risks and needs, and collaborate with interdisciplinary providers to offer resources such as respite programs, social support, meal delivery, financial and transportation services, and counseling.

For all new patient encounters, clinicians should complete their initial assessment of the patient by asking “Are there family members or others that you provide care for?”

Research also plays a major role in promoting holistic patient care through the discovery of scientific knowledge that subsequently shapes new and existing policies, programs, and outcomes related to caregiving. However, policy makers have failed to prioritize funding and investments in caregiver research, particularly for racially and ethnically diverse populations. Such investments are needed to identify key knowledge gaps, develop and test new interventions, evaluate existing policies and programs, address disparities in caregiver outcomes, use implementation science to test interventions in real-world care settings, and shape future research priorities. 

Employers

Employers are a key access point for supporting patients who work while providing care for others. Patients who work and provide caregiving are vulnerable to missing workdays due to both caregiving responsibilities as well as their own health needs. Among caregivers of adults ages 65 years and older, 75 percent of them are employed and nearly 70 percent need to adjust their work schedules to accommodate their caregiving responsibilities. There is a striking need for employers to promote family-friendly work environments, including access to workplace benefits such as guaranteed paid leave, state-level tax credits, and federal family and medical leave, paid sick days, employee assistance, workplace flexibility, and proposed unemployment insurance.

Within households, women are more likely to be caregivers and also more likely to face gender discrimination in the workplace. To address this issue, employers are key to implementing and monitoring anti-discrimination for all employees, including women caregivers in the workplace. Overall, employed caregivers earn lower wages than non-caregivers, which may be due to discrimination or other factors not related to job performance. We believe that employers should play a role in ensuring that caregiver status becomes a protected class in the workplace, similar to characteristics such as race, sex, and age.

A Pressing Need

For many of our patients, caregiving responsibilities can take a toll on their health. We often forget that caregivers are patients first. There is a pressing need to increase awareness and action related to how patients may benefit from caregiving-related policies and programs. Partnering with policy organizations that assist individuals who are balancing this dual role is a first step. The pandemic has reinforced the importance of taking care of ourselves as we take care of others. As health care providers, policy leaders, and researchers, we must ensure that these patients have equitable access to existing caregiver programs and policies to help them better serve others and focus on adaptive health behaviors and activities for themselves.  

Authors’ Note

This article received funding from the following: Cambia Health Foundation, Sojourns Scholar Leadership Program, and the RWJF Harold Amos Medical Faculty Development Program.