Estimates of the number of family members working as unpaid caregivers range from 48 million to 65.7 million, with 53 million  being a common approximation. Of those, about 37.1 million family members provide care to someone who is 65 or older. About 30% of Americans in their 50s and early 60s act as family caregivers, while 23% of Americans over 65 do so.

Most family caregivers have jobs outside the home. Family members sometimes work different shifts so that someone will always be available to help a relative as needed. Others have opted to work from home, foregoing the insurance benefits that often accompany outside employment so they can respond to a relative’s needs.

Burdens of Family Caregiving

Love and respect motivate family members to take care of aging relatives. Caregiving can be its own reward. Many caregivers find that spending quality time with aging relatives enriches their lives. Providing caregiving services can nevertheless be a second fulltime job for which no compensation is paid.

Caregivers often confront financial and emotional burdens. Caregivers face extra stress when a relative suffers from dementia or health conditions that cause personality changes. The help that caregivers need to cope with their caregiving role can be difficult to find.

Community resources can provide vital assistance to family caregivers. Day centers allow families to drop off a senior for part of the day. Respite care allows caregivers to take a much-needed break to attend to their own needs. Community volunteers may be able to help with shopping, meal preparation, and financial planning.

Still, affordable services and volunteers are not always available. Nor do volunteer services typically ease the financial burden imposed by uninsured healthcare expenses. Some seniors would be better served in an assisted living facility but many families lack the means to pay for the care their relatives need.

Eldercare Assistance

While long-term care facilities are the best option for many seniors, they are beyond the financial reach of some families. Even the expense of a home-care worker can exceed the means of families that are living within a tight budget.

Medicare does not pay for long-term eldercare, although it may cover the cost of short-term skilled care, either at home or in a nursing home, under limited circumstances. Medicaid might cover nursing home care, but beneficiaries must typically “spend down” their own financial resources as a condition of accepting assistance. Before relying on Medicaid, it is wise to get professional advice about how assets might be protected.

Medicaid in many states will pay for some form of home care for seniors who satisfy functionality and financial eligibility standards. Available services and eligibility standards vary from state to state. Even if a senior is eligible, however, many states have lengthy waiting lists for those benefits. Seniors might wait years to obtain all the services for which they are eligible.

Expanding Assistance for Senior Care

President Biden proposed an ambitious plan to help family caregivers by increasing funding for Medicaid to eliminate the waiting lists for caregiving services. The plan would also have funded respite care and day services, created a $5,000 tax credit for family caregivers, and increased tax subsidies for long-term care insurance. Uncompensated home care work would have qualified for credit toward Social Security benefits.

While Congress did not enact the proposed legislation, it narrowly passed President Biden’s American Rescue Plan, a law that was designed to help the economy recover from the COVID-19 pandemic. The American Rescue Plan provided (and most states accepted) funding for respite services for family caregivers of Medicaid recipients. Unfortunately, that funding is winding down.

President Biden delivered a National Strategy to Support Family Caregivers to Congress in September 2022. Among its other components, the strategy committed federal agencies to increasing access to care and providing better support to both caregivers and people receiving care. Biden used an executive order to implement that part of the National Strategy.

A September 2024 Progress Report  noted that nearly all of the 350 federal agency actions recommended in the National Strategy had been completed or were in progress. Accomplishments included amending Medicare payment schedules to cover the cost of caregiver training, engaging AmeriCorps Seniors volunteers to provide respite services to caregivers, and creating a new model of dementia care and making it available to Medicare beneficiaries and their family caregivers.

Actions that can be taken by executive order are nevertheless limited. Congress failed to enact President Biden’s proposal to provide paid family leave benefits to caregivers. It failed to pass a bill that would have enacted Biden’s proposed tax credit for long-term care services. Nor did Congress enact legislation to subsidize the purchase of long-term care insurance.

What Does the Future Hold?

President Trump supported, and the Republican Party Platform in 2024 included a tax credit, for unpaid family caregivers. Many advocates of the tax credit nevertheless fear that it will be funded by cutting the budget for Medicaid.

Medicaid provides the primary healthcare coverage for 83 million Americans. Twelve million of those are low-income or disabled seniors who also receive Medicare. More than half of all spending for long-term care comes from Medicaid.

Understandably, Medicaid is a popular  program. A majority of Americans view Medicaid favorably, regardless of their political party affiliation.

House Republicans nevertheless submitted a budget resolution that calls for $880 billion in cuts to Medicaid to help pay for an extension of 2017 tax cuts that disproportionately benefit the wealthy. President Trump endorsed  that proposal, apparently contradicting his promise to leave Medicaid “untouched.”

Facing a public backlash against cuts that would harm low-income Americans, including those who depend on Medicaid to fund nursing home stays, some House Republicans are resisting  the plan to slash funding of Medicaid. Others are touting a nationwide requirement that Medicaid recipients hold a job to be eligible for benefits. Most Medicaid recipients already hold a job, while many others work as unpaid caregivers for family members. States that have implemented work requirements for their Medicaid programs have faced enormous administrative costs while leaving many needy people without healthcare coverage.

The budget resolution is only a blueprint for a budget that will eventually need to be approved by the Senate, where the prospect of cutting Medicaid meets with less enthusiasm. The only certainty at this point is that increases in the Medicaid budget to expand help for caregivers are unlikely to be adopted in the current legislative session.

(This article was updated February 2025 since it originally published November 2020.)