At 86, Diane Nixon, living in an apartment at the back of a daughter’s house, no longer drives and has trouble getting around.
When her health worsened last year before the coronavirus pandemic, she and all four of her daughters talked about whether a nursing home would be the next step. She worried that she had become a burden to her children.
“She was very adamant about not wanting her daughters to be caregivers,” said Jill Cooper, one of her daughters, who lives nearby in the Pittsburgh area.
But as infections began to tear through nursing homes across the country, killing tens of thousands of residents last year, Nixon and her family realized a group home was no longer a viable choice — especially after most of them barred visitors to help contain outbreaks.
“Not to be able to see her was not an option for us,” Cooper said, so the family contacted a local home health agency to hire someone to help her during the day.
“It made us look at an alternative that we might not have looked at as hard,” she said.
The pandemic’s toll on nursing homes drove occupancy down significantly — not just from the 132,000 deaths, but also because of a decline in admissions. The 14,000 skilled nursing facilities in the United States now have on average a vacancy rate of slightly more than 25%, according to figures from the National Investment Center for Seniors Housing & Care.
But as immunization campaigns inside them began taking priority last winter, with nearly 3 million residents and staff members fully vaccinated, the outlook improved somewhat. Nursing homes point to the steep decrease in COVID-19-related deaths, saying they have dropped by 91% since December.
While the industry has received $21 billion in federal funding under the CARES Act, nursing homes are lobbying for more federal aid to cover the higher cost of personal protective equipment, testing and staffing at their facilities. They say that they are losing tens of billions of dollars in revenue because of the pandemic and that many homes are at risk of closing.
But the deaths of so many elderly residents, captive in those homes, has deepened levels of anxiety and guilt among many families planning the next phase of care for an aging relative. Experts say rethinking the purpose of nursing homes is long overdue.
Even before the pandemic began 14 months ago, nursing homes had become the source for rampant, antibiotic-resistant infections. The facilities also faced systemic problems like high turnover among staff and the gaming of the federal government’s rating system, which made it hard for families to judge the quality of homes.
For years, federal health officials and some insurers have tried to encourage more stay-at-home care, and the pandemic has created a sense of urgency.
“It’s really changed the paradigm on how older adults want to live,” said Dr. Sarita Mohanty, chief executive of the SCAN Foundation, a nonprofit group focused on issues facing older adults. The vast majority of those adults would prefer to stay at home as they age, she said.
“What’s happened is a welcome sort of market correction for nursing homes,” said Tony Chicotel, a staff attorney for California Advocates for Nursing Home Reform in San Francisco. Some families, he said, “ended up agreeing to a nursing home without giving it a lot of deliberation.”
But after trying home care during the pandemic, many families found keeping an older relative at home was a viable alternative.
Nursing homes rose from the almshouses in England and America that cared for the poor. In the United States, passage of the Social Security Act in 1935 provided money for states to care for seniors. Thirty years later the Medicaid program expanded funding, making long-term care homes central to elder care, said Terry Fulmer, president of the John A. Hartford Foundation, an advocacy group for older adults.
“If you pay the nursing homes, that’s where you go,” Fulmer said.
It was not until the 1970s that some programs began to pay for home care, and the number of nursing home residents nationwide started to slowly decline, with occupancy levels in recent years flattened to about 80%, according to data from the Kaiser Family Foundation.
New technology makes it easier to monitor someone at home, said Fulmer, who thinks the pandemic might be a “tipping point.”
Beth Kreisman, a nurse at Debra D. Feldman & Associates in Buffalo Grove, Ill., who helps families navigate these issues, faced the same dilemma with her stepmother, now 89. Her stepmother had been showing signs of dementia, and a hospital stay last spring “took a lot out of her,” Kreisman said.
“She couldn’t go home by herself,” she said. “We were really in a quandary if she should go to skilled nursing or go home with a caregiver.”
But concern about her contracting the virus at a facility persuaded the family to opt for home care. “We were absolutely convinced that if she got COVID-19 she would die,” she said.
Now that her stepmother is vaccinated, the family has renewed discussions about whether she would be best served in a nursing home. Her stepmother does not want to leave the home where she spent decades with Kreisman’s late father. “In her mind, if she moves out of her place, then she is leaving my dad,” she said.
“We’ve decided for the time being to keep her home,” she said. Many of her clients are also choosing home care in lieu of a nursing home.
But many people do not have a choice because of their financial situation or physical needs. “There’s limited wiggle room in avoiding nursing home care,” said Richard Mollot, executive director of the Long Term Care Community Coalition, a nonprofit group in New York. “You’re not given a lot of time and choices when you leave the hospital,” he said.