Caring for Medicare Beneficiaries at Home: Experiences and Priorities of Family Caregivers

Introduction

Medicare beneficiaries have a strong preference for in-home care over institutions such as hospitals and nursing homes, a preference that has only grown during the COVID-19 pandemic. As well as allowing people who are older or have disabilities to be supported in a familiar and safe environment, in-home services are potentially less costly to Medicare than care delivered in inpatient hospital and other institutional settings.¹

There are an estimated 42 million unpaid caregivers in the U.S. — disproportionately women — who provide care for someone age 50 or older.² These caregivers are an essential component of the health care infrastructure as they provide at-home support for Medicare beneficiaries, often including intense and complex care. However, traditional Medicare does not cover many of the costs associated with care at home except under the limited home health benefit or under some limited Medicare Advantage supplemental benefit offerings. As a result, many family caregivers to Medicare beneficiaries provide care without payment, recognition, or respite.

This data brief draws on six focus groups and a national survey of 1,000 family caregivers of Medicare beneficiaries, all conducted in February and March 2023, to understand caregiver experiences and needs, particularly in relation to Medicare. Those surveyed included unpaid adult family or community members who are either currently assisting a Medicare beneficiary with home health, personal care, or household management tasks or have done so in the past four years. We engaged with a diverse sample of family caregivers across genders, age, race, geography, and ethnicity (see “How We Conducted This Study” for more details).

In a companion brief, we offer an array of policy options for better supporting family caregivers and improving care for Medicare beneficiaries at home.³ These include policies to increase Medicare coverage of in-home services and financial support for family caregivers, as well as efforts to expand access to navigational support for families.

Study Findings

Family Caregiver Responsibilities

Alongside household management and personal care work, family caregivers provide a valuable link to the medical system through tasks like managing medications and arranging medical appointments. Many family caregivers provide home-based care to Medicare beneficiaries for years, with responsibilities typically growing over time. More than one-third provide more than 40 hours of care each week.

Additionally, most family caregivers reported spending at least some time looking for information on benefits and services covered by their family members’ health insurance plans. Focus group participants said they struggled to find the information they needed, especially because their caregiving responsibilities consumed so much time and energy. As one participant noted, “There are services hidden underneath all of these rocks and crevices . . . as a rookie I knew absolutely nothing. Those are things that you have to deal with on the fly while still trying to be professional . . . a case manager . . . a nurse practitioner . . . a laundry person . . . a housekeeper, and a bill payer . . . all at the same time.”

While most caregivers took on their role because they wanted to help, many also indicated that they did not necessarily have a choice because they could not afford paid help or nobody else was available. Compared to the total, Black caregivers were more likely to have previous caregiving experience and less likely to be able to find someone they trusted. Of the former caregivers surveyed, many were forced to stop because of personal challenges, like their own illness, and only a small proportion stopped because they could hire paid professionals (data not shown). Home-based assistance is unaffordable for about two-thirds of surveyed family caregivers.

About a third said caregiving was expected of them, with 41 percent of Latina and Latino and 52 percent of Asian American and Pacific Islander caregivers indicating that it was a cultural expectation. One of the caregivers who participated in the focus group said, “It’s pretty ingrained in Asian culture . . . in my case, the son has to take care of the parent as they get older. I’m expected to take care of my father.”

Impact of Caregiving

The strain of caregiving left about two-thirds feeling overwhelmed and more than half feeling burnt out. Those caring for beneficiaries with cognitive impairment were more likely to feel depressed, anxious, and overwhelmed, making them vulnerable to ending caregiving.

A focus group participant explained, “You always hear about a caregiver being put upon and it sounds almost cliché, but when you’re involved in it, it is absolutely the most stressful thing that I’ve ever experienced. You have to be there 24/7 for them, and patience is an absolute necessity in dealing with it.”

Managing the emotional and mental stress of their work and taking care of themselves were the overriding personal challenges of caregiving for many respondents, often compounded by the inability to take adequate breaks. More than half of all caregivers also reported making at least one sacrifice in their own careers to provide unpaid care, potentially impacting their long-term financial stability (data not shown).

When describing the experience of caring for both parents, a focus group participant said, “At that point, I was working as a journalist with a newspaper. I was trying to take care of both of them, and my dad was showing signs of dementia, and so I had to quit my job . . . . It was really the hardest time of my life. My stress level was through the roof.”

Family caregivers often jeopardize their own financial security to support Medicare beneficiaries at home. More than half of surveyed caregivers said they have ended or adjusted their paid employment to manage caregiving responsibilities (data not shown). Nearly half reported caregiving responsibilities made it difficult for them to meet their own regular expenses, such as rent or groceries. Younger, Black, as well as those caregiving more than 20 hours per week struggled the most to meet their own expenses. Half of respondents reported using their own savings for caregiving responsibilities.

Focus group participants indicated they often pay for the beneficiaries’ food, transportation, medical equipment, or copayments out of their own pockets, despite not being able to afford it. One participant, who cares for her grandfather, said that “financially it caused a strain on me because I had to cut back my employment, and I was spending additional money to do things for him.”

Racial and Ethnic Disparities

More than one in four family caregivers reported that the person they care for has been treated differently or experienced discrimination when using the health care system (data not shown). Factors such as their type of insurance, age, financial situation, and physical or cognitive limitations stand out.

Black caregivers were much more likely to have seen discrimination on the basis of every listed factor, with 35 percent reporting racial discrimination against the people they care for. Asian American and Pacific Islander and Latina and Latino caregivers were more likely than their white counterparts to report discrimination based on language. Caregivers in the focus groups talked about not being heard or listened to, having their concerns dismissed, or dealing with general mistreatment because of their race, gender, age, and sexuality.

“I don’t know what kind of training they have, if their training teaches them about being inclusive or nonjudgmental and things like that so they don’t talk down to you,” said one focus group member. “I don’t see that happening.”

Support for Family Caregivers

Nearly three-quarters of caregivers said that in-home services by paid professionals would help them some or a lot, as well as support through nonmedical services such as transportation, housing, and food. However, for most family caregivers, these types of help are out of reach without changes to traditional Medicare services and benefits. For those enrolled in Medicare Advantage plans, supplemental benefits are currently quite limited with regard to supporting beneficiaries and their caregivers.⁴

The vast majority of survey respondents said they would have benefited from a variety of services when providing care, including services that assist them directly. One focus group participant said, “I had to learn to inject a syringe . . . having that put upon me was really scary. He’s diabetic, so education around that and being aware of the medication that he’s taking. I need education around what he’s doing so I understand that.”

As another caregiver noted, “When you are working outside the home, you have the opportunity to decompress and to come down. Whereas, when you’re the primary caregiver there is not rest or respite. So just having mental health support.”

Some caregivers indicated that they might have to end their caregiving roles without additional support.

It’s clear that caregivers often risk their own financial health to provide care, whether through lost wages from stepping out of the workforce, reduced hours and roles at their jobs, or having to pay out of pocket for paid professional help. As such, many caregivers’ policy priorities are related to financial support, largely requiring legislation to fund them. However, steps can be taken now. Access to home care services could be improved through administrative actions, such as providing health care advocates to help caregivers navigate the system and encouraging more Medicare Advantage plan offerings that include social services such as transportation, housing, food, and nutrition. In addition, through proposed rules or administrative changes, the Centers for Medicare and Medicaid Services (CMS) could help advance a number of these services, like improved caregiver training opportunities.

Conclusion

Findings from our survey and focus groups make evident the tenacity and commitment of family caregivers to helping the Medicare beneficiaries they care for age well at home. These caregivers play a crucial role for Medicare beneficiaries, including managing their health conditions and supporting their well-being. But doing so, takes a heavy emotional, financial, and physical toll on many surveyed caregivers. As the population ages and the landscape of health care delivery for Medicare beneficiaries continues to evolve to the home, recognition of the need to assist and support family caregivers is growing. Medicare can take steps to improve support for unpaid family caregivers.

Building on the ideas we tested with family caregivers in this survey, options for policymakers to consider include:

• Ensure equitable access to the full range of services available under the Medicare home health benefit, as well as newer technologies and tools like telehealth.
• Encourage Medicare Advantage plans and accountable care organizations to offer more benefits that can support beneficiaries and their family caregivers at home. These include health-related benefits as well as nonhealth benefits such as respite, home care after hospitalization, meals, and transportation, and reimbursement for hours spent caregiving.
• Incentivize providers who bill Medicare to undertake outreach and education efforts with family caregivers. These could include using existing fee schedule payments to identify and assess their emotional, physical, and financial needs and capabilities. The CY 2024 proposed physician fee schedule includes caregiving training services that could enhance caregiver capabilities.
• Assist family caregivers to better meet the needs of beneficiaries who have physical or cognitive impairments through meaningful program support, information, and navigational resources that are culturally and linguistically responsive.
• Invest in greater research, testing, and innovation activities directed at recognizing and reducing disparities among an increasingly diverse population of family caregivers and beneficiaries.

These short-term actions would not only acknowledge family caregivers’ essential role in delivering home-based health care, but they would also better prepare the nation to care for an aging population.