The costs of caring for ill and aging loved ones don’t show up on store shelves, but they’re front and center for voters like Sharon Zimmer.
Zimmer, 65, of Onalaska, Wisconsin, has been caring for her husband, Chuck Zimmer, since he was diagnosed with Alzheimer’s and dementia in 2018.
“Everything that we worked hard for is going back into his care,” said Sharon — one of the more than 38 million unpaid family caregivers to whom Vice President Kamala Harris appealed last week with a proposal to have Medicare cover the costs of at-home care.
The ranks of U.S. family caregivers have swelled by around 4 million since 2015, according to AARP, causing many to drop out of the workforce. For Sharon, that decision came in 2021, when she gave up most of her part-time retail work after it became too much to juggle with caring for Chuck, now 67. The move slashed their annual household income by nearly $24,000.
The couple now have health insurance through Medicare, but they didn’t qualify for the program when Chuck was first diagnosed, causing a big early hit to their finances. Even now, the Zimmers are still dipping into their retirement funds to subsidize his care. Their out-of-pocket costs are set to exceed $17,000 this year, not including security and transportation.
That is far more than the average $7,200 unpaid caregivers shoulder annually, up from $7,000 in 2016, according to AARP. And while inflation overall slowed to an annual rate of 2.4% in September, the costs of at-home care for ill and elderly people were 8.7% higher than they were the same time last year, federal data show.
Sharon called Harris’ proposal “huge.” While she’d been leaning toward supporting Harris, the Democratic presidential nominee, over women’s rights issues, she called the new plan “a deciding factor for us.”
“As of today Harris would have my vote,” said Sharon, who lives in a battleground state — where Harris is set to make her sixth campaign visit Thursday — surrounded by friends who mostly back Republican former President Donald Trump.
Caregiving costs have continued to squeeze millions of households even as price increases for other goods and services cool or outright reverse. Many are long-term, essential expenses that eat away at other financial buffers, said Kelsey Flock, a dementia care specialist at the Aging and Disability Resource Center of La Crosse County, Wisconsin.
“If your loved one is diagnosed younger, they’re losing their retirement, they’re losing their income, maybe losing the primary caregiver’s health insurance,” Flock said, “so you’re coming up with all of those extras.”
Trump has also promised to lower costs for caregivers, though without detailing specific legislation. Any plan to do so by the next administration would most likely require congressional action.
The Harris campaign said in a fact sheet that the at-home care plan would be fully paid for “by expanding Medicare drug price negotiations, increasing the discounts drug manufacturers cover for certain brand-name drugs in Medicare, and addressing Medicare fraud.” The campaign didn’t estimate the cost of the proposal but said similar ones have been ballparked at $40 billion annually.
In response to multiple requests for comment, the Trump campaign twice provided the same statement (as written): “President Trump’s economic agenda will Make America Affordable Again for caregivers and elders by defeating historic inflation, lowering prices, and no taxes on Social Security.”
The economic costs of caregiving aren’t shared equally, with women and people of color taking on disproportionate burdens. The average caregiver spends roughly a quarter of his or her income on out-of-pocket costs, according to AARP data. But those ages 18-34 spend 42% of their income on caregiving. For African Americans, it’s 34%, and Hispanic and Latino caregivers spend 47%.
“My research has shown that Black and Hispanic Medicare beneficiaries are less likely to access higher-quality home health agencies,” said Shekinah Fashaw-Walters, a professor of medical ethics and health policy at the University of Pennsylvania’s Perelman School of Medicine. “This lack of access means that it takes more time, more energy, more knowledge and resources for a caregiver to find the support that they need for their loved one.”
Like the Zimmers, many households find that Medicare and Medicaid don’t cover all the costs associated with elder care, especially for complex conditions among patients whose needs change over time. Medicare covers Chuck’s medication but not nursing home or in-home care. The couple purchased a long-term care policy while they were in their 50s, but they say the out-of-pocket costs for a memory care facility would be prohibitive and they don’t qualify for Medicaid.
Coverage gaps like these are widespread, said David Grabowski, a professor of health care policy at Harvard Medical School. “This really highlights just how broken our system is for older adults with dementia and their families,” he said.
While the child care affordability crisis has gained more attention, including in the 2024 campaign, experts say elder care issues have flown comparatively under the radar. “Even though it is hard work, it is also something that is viewed as rewarding,” said Joseph Gaugler, director of the Center for Healthy Aging and Innovation at the University of Minnesota’s School of Public Health. “It’s really an issue of public health import.”
And as Flock sees it, “if we’re looking at child care, we’re being biased if we’re not looking at elder care.”
Bipartisan legislation reintroduced in January would provide a tax credit to caregivers paying out-of-pocket costs of up to $5,000. The bill, which AARP supports, has been introduced in Congress five times since 2016, but it has never seen debate on the floor.
Before the Harris campaign unveiled the new policy idea, Sharon Zimmer had her eye on a proposed $500 caregiver tax credit, also backed by AARP, that state lawmakers have considered in recent years but failed to pass. AARP plans to push for its reintroduction in January.
“Every little bit helps,” she said, “but deep down, $500 doesn’t even pay for a pair of eyewear.”
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