The handwritten doctor’s order was just eight words long, but it solved a problem for Dundee Manor, a nursing home in rural South Carolina struggling to handle a new resident with severe dementia.
David Blakeney, 63, was restless and agitated. The home’s doctor wanted him on an antipsychotic medication called Haldol, a powerful sedative.
“Add Dx of schizophrenia for use of Haldol,” read the doctor’s order, using the medical shorthand for “diagnosis.”
But there was no evidence that Mr. Blakeney actually had schizophrenia.
Antipsychotic drugs — which for decades have faced criticism as “chemical straitjackets” — are dangerous for older people with dementia, nearly doubling their chance of death from heart problems, infections, falls and other ailments. But understaffed nursing homes have often used the sedatives so they don’t have to hire more staff to handle residents.
one in 150 people.
Schizophrenia, which often causes delusions, hallucinations and dampened emotions, is almost always diagnosed before the age of 40.
“People don’t just wake up with schizophrenia when they are elderly,” said Dr. Michael Wasserman, a geriatrician and former nursing home executive who has become a critic of the industry. “It’s used to skirt the rules.”
refuge of last resort for people with the disorder, after large psychiatric hospitals closed decades ago.
But unfounded diagnoses are also driving the increase. In May, a report by a federal oversight agency said nearly one-third of long-term nursing home residents with schizophrenia diagnoses in 2018 had no Medicare record of being treated for the condition.
hide serious problems — like inadequate staffing and haphazard care — from government audits and inspectors.
One result of the inaccurate diagnoses is that the government is understating how many of the country’s 1.1 million nursing home residents are on antipsychotic medications.
According to Medicare’s web page that tracks the effort to reduce the use of antipsychotics, fewer than 15 percent of nursing home residents are on such medications. But that figure excludes patients with schizophrenia diagnoses.
To determine the full number of residents being drugged nationally and at specific homes, The Times obtained unfiltered data that was posted on another, little-known Medicare web page, as well as facility-by-facility data that a patient advocacy group got from Medicare via an open records request and shared with The Times.
The figures showed that at least 21 percent of nursing home residents — about 225,000 people — are on antipsychotics.
The Centers for Medicare and Medicaid Services, which oversees nursing homes, is “concerned about this practice as a way to circumvent the protections these regulations afford,” said Catherine Howden, a spokeswoman for the agency, which is known as C.M.S.
“It is unacceptable for a facility to inappropriately classify a resident’s diagnosis to improve their performance measures,” she said. “We will continue to identify facilities which do so and hold them accountable.”
significant drop since 2012 in the share of residents on the drugs.
But when residents with diagnoses like schizophrenia are included, the decline is less than half what the government and industry claim. And when the pandemic hit in 2020, the trend reversed and antipsychotic drug use increased.
A Doubled Risk of Death
For decades, nursing homes have been using drugs to control dementia patients. For nearly as long, there have been calls for reform.
In 1987, President Ronald Reagan signed a law banning the use of drugs that serve the interest of the nursing home or its staff, not the patient.
But the practice persisted. In the early 2000s, studies found that antipsychotic drugs like Seroquel, Zyprexa and Abilify made older people drowsy and more likely to fall. The drugs were also linked to heart problems in people with dementia. More than a dozen clinical trials concluded that the drugs nearly doubled the risk of death for older dementia patients.
11 percent from less than 7 percent, records show.
The diagnoses rose even as nursing homes reported a decline in behaviors associated with the disorder. The number of residents experiencing delusions, for example, fell to 4 percent from 6 percent.
A Substitute for Staff
Caring for dementia patients is time- and labor-intensive. Workers need to be trained to handle challenging behaviors like wandering and aggression. But many nursing homes are chronically understaffed and do not pay enough to retain employees, especially the nursing assistants who provide the bulk of residents’ daily care.
Studies have found that the worse a home’s staffing situation, the greater its use of antipsychotic drugs. That suggests that some homes are using the powerful drugs to subdue patients and avoid having to hire extra staff. (Homes with staffing shortages are also the most likely to understate the number of residents on antipsychotics, according to the Times’s analysis of Medicare data.)
more than 200,000 since early last year and is at its lowest level since 1994.
As staffing dropped, the use of antipsychotics rose.
Even some of the country’s leading experts on elder care have been taken aback by the frequency of false diagnoses and the overuse of antipsychotics.
Barbara Coulter Edwards, a senior Medicaid official in the Obama administration, said she had discovered that her father was given an incorrect diagnosis of psychosis in the nursing home where he lived even though he had dementia.
“I just was shocked,” Ms. Edwards said. “And the first thing that flashed through my head was this covers a lot of ills for this nursing home if they want to give him drugs.”
Homes that violate the rules face few consequences.
In 2019 and 2021, Medicare said it planned to conduct targeted inspections to examine the issue of false schizophrenia diagnoses, but those plans were repeatedly put on hold because of the pandemic.
In an analysis of government inspection reports, The Times found about 5,600 instances of inspectors citing nursing homes for misusing antipsychotic medications. Nursing home officials told inspectors that they were dispensing the powerful drugs to frail patients for reasons that ranged from “health maintenance” to efforts to deal with residents who were “whining” or “asking for help.”
a state inspector cited Hialeah Shores for giving a false schizophrenia diagnosis to a woman. She was so heavily dosed with antipsychotics that the inspector was unable to rouse her on three consecutive days.
There was no evidence that the woman had been experiencing the delusions common in people with schizophrenia, the inspector found. Instead, staff at the nursing home said she had been “resistive and noncooperative with care.”
Dr. Jonathan Evans, a medical director for nursing homes in Virginia who reviewed the inspector’s findings for The Times, described the woman’s fear and resistance as “classic dementia behavior.”
“This wasn’t five-star care,” said Dr. Evans, who previously was president of a group that represents medical staff in nursing homes. He said he was alarmed that the inspector had decided the violation caused only “minimal harm or potential for harm” to the patient, despite her heavy sedation. As a result, he said, “there’s nothing about this that would deter this facility from doing this again.”
Representatives of Hialeah Shores declined to comment.
Seven of the 52 homes on the inspector general’s list were owned by a large Texas company, Daybreak Venture. At four of those homes, the official rate of antipsychotic drug use for long-term residents was zero, while the actual rate was much higher, according to the Times analysis comparing official C.M.S. figures with unpublished data obtained by the California advocacy group.
make people drowsy and increases the risk of falls. Peer-reviewed studies have shown that it does not help with dementia, and the government has not approved it for that use.
But prescriptions of Depakote and similar anti-seizure drugs have accelerated since the government started publicly reporting nursing homes’ use of antipsychotics.
Between 2015 and 2018, the most recent data available, the use of anti-seizure drugs rose 15 percent in nursing home residents with dementia, according to an analysis of Medicare insurance claims that researchers at the University of Michigan prepared for The Times.
in a “sprinkle” form that makes it easy to slip into food undetected.
“It’s a drug that’s tailor-made to chemically restrain residents without anybody knowing,” he said.
In the early 2000s, Depakote’s manufacturer, Abbott Laboratories, began falsely pitching the drug to nursing homes as a way to sidestep the 1987 law prohibiting facilities from using drugs as “chemical restraints,” according to a federal whistle-blower lawsuit filed by a former Abbott saleswoman.
According to the lawsuit, Abbott’s representatives told pharmacists and nurses that Depakote would “fly under the radar screen” of federal regulations.
Abbott settled the lawsuit in 2012, agreeing to pay the government $1.5 billion to resolve allegations that it had improperly marketed the drugs, including to nursing homes.
Nursing homes are required to report to federal regulators how many of their patients take a wide variety of psychotropic drugs — not just antipsychotics but also anti-anxiety medications, antidepressants and sleeping pills. But homes do not have to report Depakote or similar drugs to the federal government.
“It is like an arrow pointing to that class of medications, like ‘Use us, use us!’” Dr. Maust said. “No one is keeping track of this.”
published a brochure titled “Nursing Homes: Times have changed.”
“Nursing homes have replaced restraints and antipsychotic medications with robust activity programs, religious services, social workers and resident councils so that residents can be mentally, physically and socially engaged,” the colorful two-page leaflet boasted.
Last year, though, the industry teamed up with drug companies and others to push Congress and federal regulators to broaden the list of conditions under which antipsychotics don’t need to be publicly disclosed.
“There is specific and compelling evidence that psychotropics are underutilized in treating dementia and it is time for C.M.S. to re-evaluate its regulations,” wrote Jim Scott, the chairman of the Alliance for Aging Research, which is coordinating the campaign.
The lobbying was financed by drug companies including Avanir Pharmaceuticals and Acadia Pharmaceuticals. Both have tried — and so far failed — to get their drugs approved for treating patients with dementia. (In 2019, Avanir agreed to pay $108 million to settle charges that it had inappropriately marketed its drug for use in dementia patients in nursing homes.)
‘Hold His Haldol’
Ms. Blakeney said that only after hiring a lawyer to sue Dundee Manor for her husband’s death did she learn he had been on Haldol and other powerful drugs. (Dundee Manor has denied Ms. Blakeney’s claims in court filings.)
During her visits, though, Ms. Blakeney noticed that many residents were sleeping most of the time. A pair of women, in particular, always caught her attention. “There were two of them, laying in the same room, like they were dead,” she said.
In his first few months at Dundee Manor, Mr. Blakeney was in and out of the hospital, for bedsores, pneumonia and dehydration. During one hospital visit in December, a doctor noted that Mr. Blakeney was unable to communicate and could no longer walk.
“Hold the patient’s Ambien, trazodone and Zyprexa because of his mental status changes,” the doctor wrote. “Hold his Haldol.”
Mr. Blakeney continued to be prescribed the drugs after he returned to Dundee Manor. By April 2017, the bedsore on his right heel — a result, in part, of his rarely getting out of bed or his wheelchair — required the foot to be amputated.
In June, after weeks of fruitless searching for another nursing home, Ms. Blakeney found one and transferred him there. Later that month, he died.
“I tried to get him out — I tried and tried and tried,” his wife said. “But when I did get him out, it was too late.”
McDonald’s is raising wages at its company-owned restaurants. It is also helping its franchisees hang on to workers with funding for backup child care, elder care and tuition assistance. Pay is up at Chipotle, too, and Papa John’s and many of its franchisees are offering hiring and referral bonuses.
The reason? “In January, 8 percent of restaurant operators rated recruitment and retention of work force as their top challenge,” Hudson Riehle, senior vice president for research at the National Restaurant Association, said in an email. “By May, that number had risen to 72 percent.”
Restaurant workers — burger flippers and bussers, cooks and waiters — have emerged from the pandemic recession to find themselves in a position they could not have imagined a couple of years ago: They have options. They can afford to wait for a better deal.
In the first five months of the year, restaurants put out 61 percent more “workers wanted” posts for waiters and waitresses than they had in the same months of 2018 and 2019, before the coronavirus pandemic shut down bars and restaurants around the country, according to data from Burning Glass, a job market analytics firm.
replace their face-to-face workers with robots and software. Yet there are signs that the country’s low-wage labor force might be in for more lasting raises.
Even before the pandemic, wages of less-educated workers were rising at the fastest rate in over a decade, propelled by shrinking unemployment. And after the temporary expansion of unemployment insurance ends, with Covid-19 under control and children back at school, workers may be unwilling to accept the deals they accepted in the past.
Jed Kolko, chief economist at the job placement site Indeed, pointed to one bit of evidence: the increase in the reservation wage — the lowest wage that workers will accept to take a job.
According to data from the Federal Reserve Bank of New York, the average reservation wage is growing fastest for workers without a college degree, hitting $61,483 in March, 26 percent more than a year earlier. Aside from a dip at the start of the pandemic, it has been rising since November 2017.
“That suggests it is a deeper trend,” Mr. Kolko noted. “It’s not just about the recovery.”
Other trends could support higher wages at the bottom. The aging of the population, notably, is shrinking the pool of able-bodied workers and increasing demand for care workers, who toil for low pay but are vital to support a growing cohort of older Americans.
“There was a work force crisis in the home care industry before Covid,” said Kevin Smith, chief executive of Best of Care in Quincy, Mass., and president of the state industry association. “Covid really laid that bare and exacerbated the crisis.”
more families turning their backs on nursing homes, which were early hotbeds of coronavirus infections, Mr. Smith said, personal care aides and home health aides are in even shorter supply.
“The demand for services like ours has never been higher,” he said. “That’s never going back.”
And some of the changes brought about by the pandemic might create new transition opportunities that are not yet in the Brookings data. The accelerated shift to online shopping may be a dire development for retail workers, but it will probably fuel demand for warehouse workers and delivery truck drivers.
The coronavirus outbreak induced such an unusual recession that any predictions are risky. And yet, as Ms. Escobari of Brookings pointed out, the recovery may provide rare opportunities for those toiling for low wages.
“This time, people searching for jobs may have a lot of different options,” she said. “That is not typical.”
All over the world, countries are confronting population stagnation and a fertility bust, a dizzying reversal unmatched in recorded history that will make first-birthday parties a rarer sight than funerals, and empty homes a common eyesore.
Maternity wards are already shutting down in Italy. Ghost cities are appearing in northeastern China. Universities in South Korea can’t find enough students, and in Germany, hundreds of thousands of properties have been razed, with the land turned into parks.
Like an avalanche, the demographic forces — pushing toward more deaths than births — seem to be expanding and accelerating. Though some countries continue to see their populations grow, especially in Africa, fertility rates are falling nearly everywhere else. Demographers now predict that by the latter half of the century or possibly earlier, the global population will enter a sustained decline for the first time.
A planet with fewer people could ease pressure on resources, slow the destructive impact of climate change and reduce household burdens for women. But the census announcements this month from China and the United States, which showed the slowest rates of population growth in decades for both countries, also point to hard-to-fathom adjustments.
spirals exponentially. With fewer births, fewer girls grow up to have children, and if they have smaller families than their parents did — which is happening in dozens of countries — the drop starts to look like a rock thrown off a cliff.
“It becomes a cyclical mechanism,” said Stuart Gietel Basten, an expert on Asian demographics and a professor of social science and public policy at the Hong Kong University of Science and Technology. “It’s demographic momentum.”
Some countries, like the United States, Australia and Canada, where birthrates hover between 1.5 and 2, have blunted the impact with immigrants. But in Eastern Europe, migration out of the region has compounded depopulation, and in large parts of Asia, the “demographic time bomb” that first became a subject of debate a few decades ago has finally gone off.
South Korea’s fertility rate dropped to a record low of 0.92 in 2019 — less than one child per woman, the lowest rate in the developed world. Every month for the past 59 months, the total number of babies born in the country has dropped to a record depth.
schools shut and abandoned, their playgrounds overgrown with weeds, because there are not enough children.
To goose the birthrate, the government has handed out baby bonuses. It increased child allowances and medical subsidies for fertility treatments and pregnancy. Health officials have showered newborns with gifts of beef, baby clothes and toys. The government is also building kindergartens and day care centers by the hundreds. In Seoul, every bus and subway car has pink seats reserved for pregnant women.
But this month, Deputy Prime Minister Hong Nam-ki admitted that the government — which has spent more than $178 billion over the past 15 years encouraging women to have more babies — was not making enough progress. In many families, the shift feels cultural and permanent.
projections by an international team of scientists published last year in The Lancet, 183 countries and territories — out of 195 — will have fertility rates below replacement level by 2100.
municipalities have been consolidated as towns age and shrink. In Sweden, some cities have shifted resources from schools to elder care. And almost everywhere, older people are being asked to keep working. Germany, which previously raised its retirement age to 67, is now considering a bump to 69.
Going further than many other nations, Germany has also worked through a program of urban contraction: Demolitions have removed around 330,000 units from the housing stock since 2002.
recently increased to 1.54, up from 1.3 in 2006. Leipzig, which once was shrinking, is now growing again after reducing its housing stock and making itself more attractive with its smaller scale.
“Growth is a challenge, as is decline,” said Mr. Swiaczny, who is now a senior research fellow at the Federal Institute for Population Research in Germany.
Demographers warn against seeing population decline as simply a cause for alarm. Many women are having fewer children because that’s what they want. Smaller populations could lead to higher wages, more equal societies, lower carbon emissions and a higher quality of life for the smaller numbers of children who are born.
But, said Professor Gietel Basten, quoting Casanova: “There is no such thing as destiny. We ourselves shape our lives.”
The challenges ahead are still a cul-de-sac — no country with a serious slowdown in population growth has managed to increase its fertility rate much beyond the minor uptick that Germany accomplished. There is little sign of wage growth in shrinking countries, and there is no guarantee that a smaller population means less stress on the environment.
Many demographers argue that the current moment may look to future historians like a period of transition or gestation, when humans either did or did not figure out how to make the world more hospitable — enough for people to build the families that they want.
Surveys in many countries show that young people would like to be having more children, but face too many obstacles.
Anna Parolini tells a common story. She left her small hometown in northern Italy to find better job opportunities. Now 37, she lives with her boyfriend in Milan and has put her desire to have children on hold.
She is afraid her salary of less than 2,000 euros a month would not be enough for a family, and her parents still live where she grew up.
“I don’t have anyone here who could help me,” she said. “Thinking of having a child now would make me gasp.”
Elsie Chen, Christopher Schuetze and Benjamin Novak contributed reporting.
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 nursing home 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, the 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, he said.
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 the elderly. Thirty years later, the Medicaid program expanded funding, making long-term care homes central to elder care, said Terry Fulmer, the president of the John A. Hartford Foundation, an advocacy group for older adults. “If you pay the nursing homes, that’s where you go,” Dr. Fulmer said.
It wasn’t 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 percent, according to data from the Kaiser Family Foundation.
President Biden’s $400 billion proposal to improve long-term care for older adults and those with disabilities was received as either a long overdue expansion of the social safety net or an example of misguided government overreach.
Republicans ridiculed including elder care in a program dedicated to infrastructure. Others derided it as a gift to the Service Employees International Union, which wants to organize care workers. It was also faulted for omitting child care.
For Ai-jen Poo, co-director of Caring Across Generations, a coalition of advocacy groups working to strengthen the long-term care system, it was an answer to years of hard work.
“Even though I have been fighting for this for years,” she said, “if you would have told me 10 years ago that the president of the United States would make a speech committing $400 billion to increase access to these services and strengthen this work force, I wouldn’t have believed it would happen.”
knocking millions of women out of the labor force — or deplete their resources until they qualify for Medicaid.
Whatever the limits of the Biden proposal, advocates for its main constituencies — those needing care, and those providing it — are solidly behind it. This would be, after all, the biggest expansion of long-term care support since the 1960s.
“The two big issues, waiting lists and work force, are interrelated,” said Nicole Jorwic, senior director of public policy at the Arc, which promotes the interests of people with disabilities. “We are confident we can turn this in a way that we get over the conflicts that have stopped progress in past.”
And yet the tussle over resources could reopen past conflicts. For instance, when President Barack Obama proposed extending the Fair Labor Standards Act of 1938 to home care workers, which would cover them with minimum-wage and overtime rules, advocates for beneficiaries and their families objected because they feared that states with budget pressures would cut off services at 40 hours a week.
“We have a long road ahead of passing this into law and to implementation,” Haeyoung Yoon, senior policy director of the National Domestic Workers Alliance, said of the Biden proposal. Along the way, she said, supporters must stick together.
half of adults would need “a high level of personal assistance” at some point, typically for two years, at an average cost of $140,000. Today, some six million people need these sorts of services, a number the group expects to swell to 16 million in less than 50 years.
In 2019, the National Academy of Social Insurance published a report suggesting statewide insurance programs, paid for by a dedicated tax, to cover a bundle of services, from early child care to family leave and long-term care and support for older adults and the disabled.
This could be structured in a variety of ways. One option for seniors, a catastrophic insurance plan that would cover expenses up to $110 a day (in 2014 dollars) after a waiting period determined by the beneficiary’s income, could be funded by raising the Medicare tax one percentage point.
Mr. Biden’s plan doesn’t include much detail. Mr. Gleckman of the Urban Institute notes that it has grown vaguer since Mr. Biden proposed it on the campaign trail — perhaps because he realized the tensions it would raise. In any event, a deeper overhaul of the system may eventually be needed.
“This is a significant, historic investment,” Mr. Espinoza said. “But when you take into account the magnitude of the crisis in front of us, it’s clear that this is only a first step.”
Long before the coronavirus hit, nutrition programs that served the nation’s older adults struggled to keep up with a growing demand. Often, they could not.
In Charlotte, N.C., and nine surrounding counties, for example, the waiting list for Meals on Wheels averaged about 1,200 people. But Linda Miller, director of the Centralina Area Agency on Aging, which coordinates the program, always assumed the actual need was higher.
She knew some clients skipped meals because they couldn’t travel to a senior center for a hot lunch every weekday; some divided a single home-delivered meal to serve as both lunch and dinner.
Some never applied for help. “Just like with food stamps, which are underused,” Ms. Miller said, “people are embarrassed: ‘I worked hard all my life; I don’t want charity.’”
5.4 million older recipients.
For years, advocates for older adults have lobbied Congress for more significant federal help. Although the Older Americans Act has enjoyed bipartisan support, small annual upticks in appropriations left 5,000 local organizations constantly lagging in their ability to feed seniors.
From 2001 to 2019, funding for the Older Americans Act rose an average of 1.1 percent annually — a 22 percent increase over almost two decades, according to an analysis by the AARP Public Policy Institute. But adjusted for inflation, the funding for nutrition services actually fell 8 percent. State and local matching funds, foundation grants and private donations helped keep kitchens open and drivers delivering, but many programs still could not bridge their budget gaps.
food insecure,” meaning they had limited or uncertain access to adequate food.
And that shortfall was before the pandemic. Once programs hastily closed congregant settings last spring, a Meals on Wheels America survey found that nearly 80 percent of the programs reported that new requests for home-delivered meals had at least doubled; waiting lists grew by 26 percent.
Along with money, the Covid relief legislation gave these local programs needed flexibility. Normally, to qualify for Meals on Wheels, homebound clients must require assistance with activities of daily living. The emergency appropriations allowed administrators to serve less frail seniors who were following stay-at-home orders, and to transfer money freely from congregant centers to home delivery.
Even so, the increased caseloads, with people who had never applied before seeking meals, left some administrators facing dire decisions.
In Northern Arizona, about 800 clients were receiving home-delivered meals in February 2020. By June, that number had ballooned to 1,265, including new applicants as well as those who had previously eaten at the program’s 18 now-shuttered senior centers. Clients were receiving 14 meals each week.
By summer, despite federal relief funds, “I was out of money,” Ms. Beals-Luedtka said. She faced the grim task of telling 342 seniors, who had been added to the rolls for three emergency months, that she had to remove them. “People were crying on the phone,” she recalled. “I literally had a man say he was going to commit suicide.” (She reinstated him.) Even those who remained started receiving five meals a week instead of 14.
diminish loneliness and help keep seniors out of expensive nursing homes. They also may help reduce falls, although those findings were based on a small sample and did not achieve statistical significance.
Interestingly, Dr. Thomas’s research found daily meal deliveries had greater effects than weekly or twice-monthly drop-offs of frozen meals, a practice many local organizations have adopted to save money.
Frail or forgetful clients may have trouble storing, preparing and remembering to eat frozen meals. But the primary reason daily deliveries pay off, her study shows, is the regular chats with drivers.
“They build relationships with their clients,” Dr. Thomas said. “They might come back later to fix a rickety handrail. If they’re worried about a client’s health, they let the program know. The drivers are often the only people they see all day, so these relationships are very important.”
a prepandemic evaluation found.
So while program administrators relish a rare opportunity to expand their reach, they worry that if Congress doesn’t sustain this higher level of appropriations, the relief money will be spent and waiting lists will reappear.
“There’s going to be a cliff,” Ms. Beals-Luedtka said. “What’s going to happen next time? I don’t want to have to call people and say, ‘We’re done with you now.’ These are our grandparents.”
The PACE provider manages all of a person’s health care needs that are covered by Medicare or Medicaid. “It becomes your form of health care coverage,” said Peter Fitzgerald, executive vice president for policy and strategy at the National PACE Association, a membership and advocacy organization.
States decide whether to offer PACE programs; currently 30 have programs serving about 55,000 people, Mr. Fitzgerald said.
Where change is happening
Some states and regions are moving to address the needs of their aging citizens.
In January, Gov. Gavin Newsom released a master plan for aging for California. It calls for creating, over the next decade, millions of housing units for older residents, one million high-quality caregiving jobs, and inclusion goals such as closing the digital divide and creating opportunities for work and volunteering. Colorado, Massachusetts, Minnesota and Texas have already established master plans, and a number of other states are working on them.
California’s plan also calls for a new state office focused on finding ways to innovate using Medicare funds, especially for low-income, chronically ill seniors who also participate in Medicaid.
“We think this can really help our state by bringing together medical and nonmedical services for people who want to live well in the place they call home,” said Gretchen E. Alkema, vice president of policy and communications at the SCAN Foundation, a nonprofit focused on elder care that has worked with California and other states on age-friendly models.
In the Atlanta metropolitan area, which began tackling these issues head-on in 2002, one in five residents will be 65 or older by 2050, according to the Atlanta Regional Commission, a planning organization. The group has responded by developing a “lifelong communities initiative” to raise awareness in local government of the need for housing that is affordable and convenient to sidewalks, shopping and transportation.
Atlanta and four suburbs have joined an AARP-sponsored network of age-friendly communities, and several city neighborhoods have created plans.
The result, prosecutors said, was that Brookdale “has been awarded higher star ratings than it deserved.” They added, “The chain’s manipulation has allowed Brookdale to attract prospective patients and their families to its facilities by misleading them about its quality of care.”
Prosecutors also accused Brookdale of illegally evicting or transferring residents so that the chain could “fill its beds with residents who will bring in more money.” In one instance highlighted in the suit, prosecutors said Brookdale discharged a 78-year-old resident who suffered from heart and kidney disease without removing his catheter.
The lawsuit seeks civil penalties and an injunction to prevent future unlawful conduct. Under California law, civil penalties are up to $2,500 per violation. In this case, where the violations are committed against seniors or people with disabilities, the law provides for an additional penalty of up to $2,500 per violation.
A Brookdale spokeswoman didn’t immediately respond to a request for comment.
The Times previously reported that a Brookdale facility in Lexington, Ky., told Medicare in 2017 that every resident got an average of 75 minutes of care each day. In reality, nurses at the Brookdale Richmond Place facility spent an average of less than 30 minutes a day with patients. Brookdale received five stars for staffing. Absent the inflated numbers, it probably would have received only one or two stars.
A former Brookdale nursing assistant said in a deposition last year that her supervisors had told her to falsify residents’ medical records to make it look as if they received more care than they did.
Heather Hunter, a spokeswoman for Brookdale, told The Times, “We have detailed policies in place to ensure compliance with C.M.S. reporting rules, and we are not aware of any instance where inaccurate or false information was submitted by any of our communities outside of the confines of the C.M.S. rules.”
President Biden nominated Mr. Becerra, whose office brought the case against Brookdale, for secretary of health and human services, which oversees C.M.S. The Senate has not yet voted on the nomination.
The pandemic laid bare the flaws in the government rating system.
The state health inspections do little to penalize homes with poor records of preventing and controlling infections. From 2017 to 2019, The Times found, inspectors cited nearly 60 percent — more than 2,000 — of the country’s five-star facilities at least once for not following basic safety precautions, like regular hand washing. Yet they earned top ratings.
In San Bernardino, Calif., inspectors wrote up Del Rosa Villa for four different infection-control violations. It kept its five stars. Ninety residents at the 104-bed facility have contracted the coronavirus, and 13 have died.
Del Rosa Villa officials didn’t respond to requests for comment.
Life Care Centers of Kirkland, Wash., the first nursing home in the United States to have documented coronavirus cases, was found in 2019 to have weak infection controls, despite its five stars. State inspectors wrote it up for failing to “consistently implement an effective infection control program.”
Thirty-nine of the facility’s residents have died from Covid-19. The home has 190 beds.
Leigh Atherton, a Life Care spokeswoman, said that citation was the only lapse in infection control that inspectors had identified over 32 previous visits. She said the home quickly fixed the problem.
If the rating system worked as intended, it would have offered clues as to which homes were most likely to have out-of-control outbreaks and which homes would probably muddle through.
That is not what happened.
The Times found that there was little if any correlation between star ratings and how homes fared during the pandemic. At five-star facilities, the death rate from Covid-19 was only half a percentage point lower than at facilities that received lower ratings. And the death rate was slightly lower at two-star facilities than at four-star homes.
A facility’s location, the infection rate of the surrounding community and the race of nursing home residents all were predictors of whether a nursing home would suffer an outbreak. The star ratings didn’t matter.
TORONTO — Devora Greenspon is among the lucky ones. She is one of the 1.4 percent of Canadians who has received two shots of a coronavirus vaccine. So have 90 percent of the residents in her nursing home.
How has it changed her life?
“It’s like it never happened,” says Ms. Greenspon, 88, who is still sequestered mostly in her room. Her walks have been confined to the corridor; she has not been allowed to leave the center for nonmedical reasons since October.
Long-term care homes, as they are called in Canada, were prioritized for the first precious doses of vaccines, to few objections — they were ground zero for the pandemic’s cruel ravage. Around 66 percent of the country’s terminal Covid-19 victims lived in nursing homes, among the highest rates in the world.
But while the vaccines have given the majority of nursing-home residents protection from death by the virus, so far they have not offered more life. Some residents have compared their lives to those of prisoners and caged animals.
game night or choir practice. And some homes are permitting indoor visits under U.S. federal guidelines put in place in Septemberthat allow them if a home has been virus-free for 14 days, and county positivity rates are below 10 percent, regardless of the home’s vaccination rate.
But elsewhere, homes are about to reach a full year of being closed to visitors, despite the plummeting of coronavirus cases.
AARP and other advocacy organizations have called on the U.S. government to ease visitation guidelines as vaccines are rolled out innursing homes. Manynote that with vaccinations, the likelihood of residents contracting and dying from Covid-19 is lower, but the harm to residents from social isolation continues unabated.
Ms. MacKenzie noted that the extended periods of isolation are having detrimental effects on residents’ health in Canada as well.
large survey of nursing-homes residents and their families by Ms. MacKenzie’s office found the majority reported a marked decline in cognitive function and emotional well-being, and almost half reported their physical functioning had worsened. The survey also found that the proportion of residents on antipsychotic medication — traditionally prescribed to manage behaviors like agitation related to dementia — had increased by 7 percent over six months.
The question of how to care for the country’s senior population during a pandemic isn’t unique to Canada and the United States. Many nursing homes around the world banned visits as the coronavirus arrived around a year ago. Soon after, geriatricians sounded the alarm about the rapid decline in health and well-being of residents, triggering a debate about the balance between protection and quality of life, as well as the rights and autonomy of residents. As a result, many jurisdictions reintroduced some sort of visitor policy, as the first wave subsided.
Many are calling for a similar discussion to happen again in Canada.
“If we really don’t allow people more civil and social liberty, and allow them to meaningfully engage in social activities in some way, these people are going to give up, as many of them have already done,” said Dr. Nathan Stall, a geriatrician at Toronto’s Mount Sinai Hospital.
Betty Hicks, 82, broke her hip a couple months before her nursing home went into lockdown and she never regained her ability to walk, says her daughter Marla Wilson. Without the regular visits from her large family, the mother of eight deteriorated quickly, losing nearly 20 pounds and the ability to even pick up a phone, her daughter says.
Now that Ms. Hicks has been vaccinated, like everyone elsein her nursing home, the argument that she’s locked up for her own safety seems painfully weak, her daughter says.
“You always hear people say, ‘Oh they lived a long life,’” said Ms. Wilson. “Right now, they aren’t living. They are existing.”
While overprotective government regulations have prevented long-term care homes from adjusting their restrictions, they are only partially responsible, said Dr. Samir Sinha, co-chair of the National Institute on Ageing and director of geriatrics at Toronto’s Sinai Health System and University Health Network.
Many facilities have been so focused on preventing outbreaks that they’ve been unwilling to develop creative ways of keeping their residents mentally and physically stimulated, he said.
“The majority of nursing homes across the country have found an excuse to not do something,” he said. “You even have these homes who are marketing it, ‘We’re going above and beyond to keep you safe.’ We translate that to mean, ‘We are locking you in your room for good.’ They are actually violating people’s human rights.”
And for many residents, Dr. Sinha pointed out, time is running out: The average stay in a Canadian nursing home, to put it gingerly, is just two years.
“I’d like to take them on a bus to Niagara Falls, or anywhere, even if we can’t get off the bus. When can we do that?” said Sue Graham-Nutter, the head of two nursing homes in Toronto where 98 percent of residents have been vaccinated. She is haunted by last spring’s outbreak that killed many of her residents, but she worries many more will die before they are afforded some basic joy.
“They want to go and hang out with their friends,” said Ms. Graham-Nutter, the chief executive of Rekai Centres. “When can we do that?”
Lawyers say the rules restricting residents from leaving breach rights laid out in the Canadian Charter of Rights and Freedoms. “Long-term care residents should be able to come and go like everybody else,” said Jane Meadus, a lawyer at the Advocacy Centre for the Elderly, a legal clinic for seniors. “Does the fact you live in long-term care give you less charter rights?”
Few of her clients are willing to challenge their home’s restrictions, however.
“They are afraid the home will somehow retaliate, or try to remove them from the home,” said Ms. Meadus. “We are talking about institutions that have a lot of power over a very vulnerable population.”
Jonathan Marchand is one exception. Last summer, he slipped out of his care home near Quebec City and moved into a makeshift cage erected near the provincial legislature, to stage a protest. Mr. Marchand, a 44-year-old network engineer, suffers from muscular dystrophy and requires a ventilator to breathe. For years, he’s fought to leave the institution and spend the government money to hire his own caregivers at home.
The pandemic gave him another powerful argument. After five nights sleeping in his motorized wheelchair and on a cot, he returned to the facility, with a government promise to work on a pilot project for community living.
Since then, he has not been allowed to leave the property except for medical reasons, he says. While he calls the rules unjust and unfair, he understands why they are there — because of the devastation an outbreak from variants could wreak.
“Long-term carefacilities were the first things to close down; they will be the last thing to open up,” he said. “I think they will be very cautious in opening up, and I can’t blame them for it.”
Still, some people have decided not to wait for the rules to change, but to relish the small joys vaccination provides.
Suzanne Charest rushed to an Ottawa hospital last month after being notified by her father’s nursing home that he had suffered what seemed like another heart attack. He was in so much pain, she said, he talked frantically through the night, as if it might be their last time together. Thankfully, it was a false alarm.
The next day, after he was back in the nursing home, Ms. Charest, who like her father has been vaccinated, did something she hadn’t done in almost a year.
She hugged him.
Catherine Porter reported from Toronto. Reporting was contributed by Allison Hannaford in North Bay, Sarah Mervosh in New York and Danielle Ivory in New Jersey.