Improving Help at Home: Medicare Beneficiaries’ and Caregivers’ Experiences

Medicare’s home health benefit is crucial to the welfare of its 62 million beneficiaries. Older Americans and people with disabilities rely on Medicare home health for postacute services and to help manage chronic conditions, but the benefit is difficult to access and service restrictions limit its potential. A recent study finds disparities by race, ethnicity, and income in the use of home health services. We interviewed 17 Medicare beneficiaries of different gender, race, ethnicity, and age who need help managing health conditions at home, along with their caregivers, to better understand what beneficiaries experience and the challenges they face. The interviews revealed the following insights:

• Medicare beneficiaries who need help at home are living with cognitive and physical limitations that greatly restrict their lives. Some people are unable to perform daily activities or tasks without assistance. These include walking, driving, showering, running errands, or managing medications or doctors’ visits. Many feel isolated and lonely. Despite these struggles, beneficiaries are passionate about maintaining their independence, dignity, and ability to live at home.

• Managing medical conditions requires help with daily personal care and household tasks. Prescription drug regimens can be complicated for beneficiaries to manage on their own; diet and nutritional needs can be difficult to meet when medical conditions cause loss of appetite and nausea; and incontinence, combined with mobility problems that delay getting to the bathroom, can lead to rashes and infections. Cognitive impairments make it even more difficult or impossible to manage medicines, appointments, and finances.

• Access to consistent in-home services is difficult to obtain. Most participants were unaware that Medicare covered in-home assistance and despite hospitalizations, few had received a home health referral. Hospital discharge is often a key point for referral to home health services to help manage postacute care. One participant lamented that Medicare would “rather pay for a nursing home” than keep people in their homes. All felt in-home services would help and take pressure off family caregivers but cannot afford to pay out-of-pocket, struggle with red tape, and already face daunting health system interactions in arranging check-ups, referrals, and treatments.

• Family is the first and primary source of assistance but cannot fully address beneficiaries’ needs. Caregivers try to head off medical emergencies or a decline in health status and often feel guilty about not doing enough. In turn, many beneficiaries worry about being a burden and limit asking for additional help from family or friends. Most caregivers said they cannot fulfill their loved ones’ needs alone or that the amount of caregiving they provide is not sustainable. They worry that being a caregiver stretches their finances, jeopardizes their job or ability to work, and leads to neglecting their own health.

• Culture and race affect participant’s experiences. Three of the four Black participants shared experiences of racism in the health care system. These experiences can create barriers to accessing Medicare home health care benefits as the health care system is the gateway to these services. Several Latinx and Asian American and Pacific Islander participants feel that linguistic barriers undermine care. As a result, many preferred a home health provider who speaks their language.

The participants’ comments suggest the following policy priorities:

• Broaden access to benefits and cut the red tape. Few beneficiaries have received a home health referral. Most assume they do not qualify or have been told they do not. Some have looked into eligibility but gave up when faced with bureaucracy or said they grew tired of “jumping through hoops” and facing “dead ends.”

• Expand the types of services covered and increase scheduling flexibility. Participants pointed to a range of services — assistance with personal care and daily tasks — that are critical to health and the ability to remain at home. Some beneficiaries are employed, and many engage in community life — both important to maintaining mental health and reducing social isolation. Their lives require flexibility and may not mesh well with predetermined scheduling of services.

• Technology is an important tool but doesn’t replace human assistance. Participants talked about utilizing telehealth and apps but noted that these options don’t work for everyone; personal care requires hands-on assistance. Participants said having a consistent, reliable in-home aide who is invested in the job and treats them with dignity could reduce reliance on family caregivers and social isolation. Some would be more comfortable with a caregiver who is familiar with or shares their cultural background and language preferences.

The views and experiences of this small but diverse group underscore the need for policymakers to listen and respond to the concerns of Medicare beneficiaries and their caregivers; investigate disparities and barriers to care; and probe deeper on issues of racism and cultural differences to broaden access to this important but underutilized benefit.