When a loved one becomes seriously ill—whether from a chronic condition or an acute episode—families are often forced to make difficult decisions about long-term care. Many people feel unprepared to navigate these choices, both emotionally and practically, and they may lack reliable information to guide them.
In unfamiliar territory, families commonly seek advice from friends, medical professionals, or case workers, and those sources may offer conflicting recommendations. The result is frequently high stress and a sense of being overwhelmed.
The COVID-19 pandemic has intensified the long-term care challenges already facing the country. Concerns about virus outbreaks in nursing homes are important, but another strain on the system comes from recovering COVID patients who are no longer contagious but still need skilled nursing care after hospital discharge. This increases demand on an already overburdened care network.
Costly options
When someone needs nursing care, there are essentially three options:
- Hire a nurse or caregiver to provide services in the person’s home,
- Move the person—temporarily or permanently—into a skilled nursing facility (a nursing home), or
- Rely on family members to provide care, sometimes with supplemental paid support when needs are advanced.
Paid care options can become expensive quickly. Genworth’s Cost of Care Survey shows steadily rising prices. In 2019, their findings included:
- The national average for a home health aide was about $144 per day (based on 44 hours per week), roughly $4,385 per month.
- In-home skilled nursing averaged $87.50 per visit; if daily, that equals about $2,625 per month, and this cost may be in addition to other home care services.
- Assisted living private bedrooms averaged $133 per day, about $4,051 per month.
- Nursing homes with skilled nursing care averaged $247 per day for a semi-private room and $280 for a private room, roughly $7,513 or $8,517 per month, respectively.
The cost of unpaid care
Projected care costs continue to rise, but unpaid family caregiving carries significant costs as well. In 2017, AARP estimated family caregivers provided an estimated 34 billion hours of care to people with limitations in daily activities. Valued at the average paid caregiver wage then, that unpaid care equated to nearly $470 billion for the year. With higher wages today, the dollar value would be considerably greater.
Family caregivers also lose wages, retirement contributions, Social Security benefits, and employer-provided benefits—losses that add up to billions more. Researchers at the Urban Institute’s Income and Benefits Policy Center project that lost wages due to unpaid family caregiving could reach $147 billion annually by 2050 as the Baby Boomer generation ages. On a per-caregiver basis, estimated lost wages were $5,251 per year as of 2013 and may rise to $6,323 by 2050.
An unexpected expense
The Social Security Act of 1935 and the 1965 amendments that created Medicare and Medicaid dramatically improved access to health care for seniors and other vulnerable Americans. However, Medicare’s coverage of nursing care is limited. For short-term skilled nursing care following a qualifying hospitalization, Medicare covers 100 percent of costs for the first 20 days, then requires a daily copay for days 21 through 100, after which the patient is responsible for all costs.
Importantly, Medicare does not cover long-term custodial care at home, in assisted living, or in skilled nursing facilities. Medicaid can cover long-term nursing home care, but eligibility generally requires very low income and few assets. This gap in coverage often forces families into unpaid caregiving or creates severe financial strain.
More care recipients with fewer caregivers
About 52 percent of people who reach age 65 will need long-term care services at some point, including nearly half of men and more than half of women. This growing demand highlights the care crisis: more people will need services while the supply of paid and unpaid caregivers is constrained.
Two major trends worsen the situation. First, the demand for paid caregivers is rising while the workforce available to provide paid care is not keeping pace, which will likely push costs higher. Second, unpaid family caregiving is becoming less available as social patterns change. Census data show that roughly one in 11 Americans age 50 and older lacks a spouse, partner, or living child—a number expected to grow as marriage rates decline and families have fewer children. The traditional model where multiple family members share caregiving responsibilities is therefore less common.
A long-term crisis with no end in sight
Long-term care in the United States is a complex, multi-faceted problem without a simple fix. Some advocate for broad policy changes such as expanding Medicare to cover long-term care, while others propose state-level programs or co-ops to address gaps. The COVID-19 pandemic has both highlighted and intensified these issues by disproportionately affecting seniors and increasing the number of patients requiring post-hospital skilled care.
Meanwhile, rising rates of dementia, diabetes, stroke, and other chronic conditions continue to increase the need for long-term services. Addressing this challenge will require coordinated efforts from government, the private sector, advocates, and families to build sustainable solutions and strengthen support for both paid and unpaid caregivers. The urgency is clear—action is needed now to better support aging Americans and those who care for them.