Complex restrictions are preventing patients from accessing medical aid in dying, even in states where it is allowed. New legal and legislative efforts are pushing to change that.Five years ago, Dr. Nicholas Gideonse spoke with an older man who had received a terminal cancer diagnosis and was hoping to use Oregon’s medical aid-in-dying law.Oregon’s Death With Dignity Act, in effect since 1997, permits doctors, after a complex process of requests and waiting periods, to prescribe lethal medication for dying patients to self-ingest.The nonprofit group End of Life Choices Oregon had referred the man to Dr. Gideonse, a primary care doctor at Oregon Health & Science University and a hospice medical director, who had already helped many patients use the law.But this time he could not. “I’m really sorry,” he told the man on the phone. “I’m not going to be able to help you with this.” Oregon’s law — and all the laws that permit medical aid in dying in 10 states and in Washington, D.C. — has residency requirements. This man would have qualified — except for that fact he lived in nearby Washington State.The patient’s response, Dr. Gideonse recalled, was “stunned silence, deep disappointment.” A number of Dr. Gideonse’s primary care patients drive 20 to 30 minutes across the Washington border to his office in Portland. There, he can offer them any medical service he is qualified to provide — except that one — without proof of residency. And although Washington has its own aid-in-dying law, its southwestern region has few providers who can help patients use it.Last month Dr. Gideonse, backed by pro bono lawyers and Compassion & Choices, an advocacy group for expanding end-of-life options, filed a federal lawsuit claiming that the residency requirement for Oregon’s aid-in-dying law is unconstitutional. “I realized how important this could be for patients seeking access,” he said.The lawsuit is one of several legal and legislative efforts around the country to reduce the requirements that patients must contend with in order to receive aid in dying. In some states, lawmakers have already broadened the types of health care providers that can participate, or have shortened waiting periods or allowed waivers.“I think of it as MAID 2.0,” said Thaddeus Pope, an end-of-life bioethicist at Mitchell Hamline School of Law who tracks such actions, referring to the acronym for medical aid in dying. “We found out there’s an access problem.” He added, “We set all these safeguards and eligibility requirements and they locked a lot of people out.”Oregon led the shift in easing access, amending its law in 2019. The state previously required patients to make two verbal requests for life-ending medication, at least 15 days apart, to ensure that they had not changed their minds. Now, if the patient is unlikely to survive that long, their doctor can waive the 15-day waiting period.“Fifteen days is everything when you are suffering,” said Kim Callinan, the president and chief executive of Compassion & Choices, which supported the change. “People who are eligible for the law are hitting roadblocks and barriers.”In 2016, for example, Youssef Cohen, a political scientist at New York University, took the extraordinary step of moving across the country to use the Oregon law as he was dying of mesothelioma at 68. “He wanted the option to determine the end of his life,” said his wife, Lindsay Wright, who is an associate dean at the university.To establish residency, the couple had to hurriedly sign an apartment lease, obtain an ID from the state motor vehicle agency, transfer medical records and arrange an immediate appointment with a Portland doctor to qualify for medical aid in dying. Dr. Cohen then faced the 15-day waiting period.“He didn’t make it,” Dr. Wright said. “He died six days after we arrived. And he suffered.”A 2018 study from the Kaiser Permanente health system in Southern California showed that about one-third of qualifying patients died before they could complete the process.New Mexico, which in June became the most recent state to legalize medical aid in dying, has adopted a markedly less restrictive approach than other states. The largely rural state is the first to allow not only doctors but advanced practice registered nurses and physician assistants to help determine eligibility and write prescriptions for lethal medication. “In some communities, they’re the only providers,” said Representative Deborah Armstrong, a Democrat and the bill’s primary sponsor.Although a doctor must also affirm that a patient is terminally ill, New Mexico patients can skip that step if they have already enrolled in hospice, as most do. The patient need only make one written request, rather than two or more requests, as other states require. A 48-hour waiting period between when the prescription is written and when it is filled can be waived. “People walk up and tell me how thankful they are to have this option if they need it,” Ms. Armstrong said.California has simplified its 2016 law as well. In October, Gov. Gavin Newsom signed legislation that, starting in January, reduces the 15-day wait between verbal requests to 48 hours and eliminates the requirement for a third written “attestation.”Similar bills died during the most recent legislative sessions in Hawaii, Washington and Vermont, but will be reintroduced, Ms. Callinan said. And in many states — including Delaware, Indiana, North Carolina, Virginia, Pennsylvania and Arizona — new aid-in-dying bills, if passed, will ease requirements for patients or expand the kinds of providers who may participate.On the legal front, the Oregon lawsuit filed by Dr. Gideonse argues that residency requirements for aid in dying violate two sections of the U.S. Constitution, one barring state laws that limit the ability of a nonresident to access medical care and one prohibiting state laws that burden interstate commerce. The state must respond by Dec. 27.“This is the only medical procedure we can think of that is limited by someone’s ZIP code,” said Kevin Diaz, the chief legal advocacy officer at Compassion & Choices.A separate federal class action suit claims that California’s law, which like the others requires patients to self-administer the drugs that end their lives, discriminates against patients dying of neurodegenerative diseases that make it physically impossible to take medication without assistance.The plaintiffs, charging violation of the Americans With Disabilities Act and California law, include patients with multiple sclerosis and A.L.S., also known as Lou Gehrig’s disease, and their doctors. (In denying a request for a preliminary injunction, a judge ruled in September that the plaintiffs were asking California “to cross the line to euthanasia.”)Catholic organizations, anti-abortion advocates and some disability groups continue to oppose aid in dying. The California Catholic Conference, the church’s public policy organization, for example, argued in June that liberalizing the state’s law “puts patients at risk of abuse and the early and unwillful termination of life.”But polls regularly report broad public support. Last year, Gallup found that 74 percent of respondents agreed that doctors should be allowed to end patients’ lives “by some painless means” if they and their families request it.Liberalizing the laws will likely increase participation, the bioethicist Dr. Pope predicts. “We know from evidence around the world that if you reduce the waiting period, or allow waivers in certain cases, it materially expands access,” he said.Experts do not expect a major surge, however. Even in states where the practice has been legal for years, aid in dying accounts for very few deaths, a fraction of one percent. Of those who successfully navigate the process, moreover, about one-third do not use the drugs and instead die of their diseases.Still, should Dr. Gideonse prevail in his lawsuit and a likely appeal, residency requirements in other regions might also start to fall. That could allow New York or Pennsylvania patients to use New Jersey’s aid-in-dying law, for instance, or Maryland and Virginia residents to seek providers in Washington, D.C.It is an outcome that would please Dr. Gideonse. “This is an action in support of a needed and very important service,” he said. “I’m optimistic.”

Most Medicare beneficiaries don’t compare plans during open enrollment season, and may be paying more, or accepting more restrictions, than they should.One morning last month, Eunice Korsah, a retired nurse in Burke, Va., spent about half an hour on the phone being guided through the complexities of various plans for Medicare Part D, which covers prescription drugs.Her current drug plan was being discontinued and the insurer wanted to move her into one with sharply higher premiums. “I decided, ‘No way,’” she said. But what to replace it with? She looked at the Medicare website for Part D plans available in Fairfax County and found 23, with monthly premiums ranging from $7.10 to $97.30. “There are so many choices, so I wanted someone to clarify them for me,” she said.Jack Hoadley, a health policy researcher at Georgetown University, was on the other end of the call with Ms. Korsah. He has for two years volunteered with the State Health Insurance Assistance Program, or SHIP, the federally funded, free counseling service that helps Medicare beneficiaries find the coverage that’s best for them.“Some very smart people just don’t know how Medicare works and get confused,” Dr. Hoadley said. For example, “it can make a $1,000-a-year difference if you’re willing to try several different pharmacies.”Ms. Korsah, 74, and her son had already compiled a list of her eight medications — for blood pressure, cholesterol, acid reflux and glaucoma — and their doses. Using the online Medicare Plan Finder, Dr. Hoadley narrowed the field to three suitable selections.With the cheapest plan, from Wellcare, Ms. Korsah’s estimated total yearly drug and premium costs (“the magic number,” he said) would be $301 a year if she used a CVS or Giant pharmacy — but $1,125 if she took the same prescriptions to a Walmart. Conversely, a Humana plan would cost $525 a year through a Walmart pharmacy, but more than twice that at CVS. With a Cigna plan, the best deal involved a mail-order pharmacy.In theory, all beneficiaries who have traditional Medicare with Part D coverage, or who are interested in or enrolled in Medicare Advantage programs (an “all-in-one” alternative offered through private insurers), should be making similar calculations during this annual open enrollment period, from Oct. 15 until Dec. 7. It’s the reason that insurers’ pitches for plans are showing up in their mailboxes and inboxes, and on TV ads featuring Joe Namath and Jimmie “Dyn-o-mite” Walker.“The idea is that consumers can re-evaluate what coverage is best for them,” said Tricia Neuman, the executive director of the Program on Medicare Policy at the Kaiser Family Foundation. Since each year brings changes to Part D and Medicare Advantage — in premiums, benefits, co-payments and provider networks — shopping around makes sense.But that’s not what happens.For 2019, 71 percent of beneficiaries said they didn’t compare plans during the open enrollment period, according to a Kaiser study published last month. The rate was even higher among Black and Hispanic beneficiaries, people over 85 and those with lower income and fewer years of education — precisely the groups most likely to require more medical services and drugs, and least able to pay high costs.Roughly half of respondents had never visited the official Medicare website, used its 1-800-MEDICARE help line or read the “Medicare & You” handbook that annually arrives by mail.Accordingly, “there’s not a lot of switching,” Dr. Neuman said. Kaiser found that in 2019, only eight to 10 percent of beneficiaries voluntarily changed their Medicare Advantage or stand-alone Part D plans.Ms. Korsah’s medications. Because she ended up signing up with the low-cost Medicare Wellcare Part D plan, she will probably pay less for drugs than she did last year.Kenny Holston for The New York TimesSome of that inertia may reflect people’s satisfaction with their coverage; it might also indicate an overwhelming amount of choice. For 2022, beneficiaries face an average of 33 Medicare Advantage plans to select from (but 56 in Philadelphia and 63 in Cincinnati) and 30 stand-alone Part D plans.“It is hopelessly, needlessly complicated and it continues to get more complicated,” said David Lipschutz, associate director of the Center for Medicare Advocacy. “The entire system relies on savvy actors maximizing their choices, and that just does not happen.”Even those who are motivated to comparison shop can have trouble finding reliable information. Most overtures and ads come from brokers or agents with financial incentives, though the offers may mimic official Medicare communications.Moreover, “brokers typically only market a portion of plans,” sometimes excluding the most advantageous, a fact they’re not required to disclose, said Gretchen Jacobson, a vice president of Medicare at the Commonwealth Fund, a foundation which supports health research.The Center for Medicare Advocacy, a nonprofit group, has charged that Medicare itself has shown bias toward private Medicare Advantage plans in its promotional materials, starting in 2017. “They started overplaying some of the benefits and downplaying some of the negatives,” said Mr. Lipschutz. “I think they wanted private health insurers to thrive.”Medicare has since resumed a more neutral stance, but “they still have a way to go,” Mr. Lipschutz said.As for the star ratings that Medicare awards, critics have begun to invoke “the Lake Woebegon” effect (after the radio personality Garrison Keillor’s fictional town where “the children are all above average”). Medicare gave four stars or higher to 68 percent of 2022 Medicare Advantage plans with drug coverage, making the rankings less than useful for comparisons.How much does all this matter? With Part D, choosing the most cost-effective plan goes beyond a financial issue, because skipping unaffordable medications can have health consequences. And choosing between traditional Medicare and Medicare Advantage involves substantial differences in the health care experience.Medicare Advantage plans, so increasingly popular that 42 percent of Medicare beneficiaries are now enrolled in one, offer one-stop shopping. They include a Part D benefit, and don’t require a supplemental Medigap policy to cover co-payments and deductibles.They put a cap on out-of-pocket expenses ($7,550 for in-network coverage in 2021). They also promote “extra benefits” like dental, hearing and vision coverage, and transportation — though “they may not be very generous,” Dr. Jacobson said. However, some services aren’t available to everyone in the plan, and beneficiaries can’t learn if they’ll qualify until after they’ve enrolled.Medicare Advantage also restricts full coverage only to doctors, hospitals and pharmacies within their networks; if patients go outside the network, they face higher costs or may have to pay entirely out of pocket. In-network providers change frequently, and it can be challenging to ascertain which ones a plan includes.Except for emergency or urgent care, Medicare Advantage coverage may not extend outside beneficiaries’ county or state. “If you’re in Albany, you may not be able to get care in New York City,” Dr. Jacobson said. Advantage plans also often require preauthorization from the insurer for services and drugs.With traditional Medicare, “you can see any provider you want to at any time, without getting prior approval,” Dr. Jacobson said. It’s accepted nationally. But factoring in a private Medigap policy and a separate Part D plan sometimes pushes overall costs higher.Still, a recent Commonwealth Fund analysis found that traditional Medicare and Advantage plans (excluding special needs plans) now attract similar populations in terms of demographics and health, with high rates of satisfaction in both groups (though both reported waiting more than a month for a doctor’s appointment).Advantage beneficiaries are more likely to receive some care management services, such as a review of their medications, the study found. But when it comes to patients’ health, “it doesn’t seem to change the outcomes much,” Dr. Jacobson said, because hospitalization and emergency room use were roughly the same for both groups.That raises the question of whether the federal government should continue paying Advantage plans 4 percent more per beneficiary than it pays for those in traditional Medicare. Everyone who pays a Part B premium, which is almost every beneficiary, winds up subsidizing that higher cost.But for now, it’s open enrollment season. SHIP programs in every state, with 12,500 trained team members, represent the best source of unbiased information and work with more than 2.5 million people each year.Ms. Korsah, who opted for traditional Medicare because she wants to be able to choose her doctors, signed up with the low-cost Wellcare Part D plan and will probably pay less for drugs than she did last year.So she appreciated Dr. Hoadley’s counsel. “He was a great help,” she said.

Anne Cotton had enjoyed her years at an assisted living facility in Corvallis, Ore. But at 89, her health problems began to mount: heart failure, weakness from post-polio syndrome, a 30-pound weight loss in a year.“I’m in a wheelchair,” she said. “I’m getting weaker. I’m having trouble breathing.” On Sept. 30, Dr. Helen Kao, her palliative care doctor and a medical director at Lumina Hospice & Palliative Care, determined that she qualified for hospice services — in which a team of nurses, aides, social workers, a doctor and a chaplain help patients through their final weeks and months, usually at home.Ms. Cotton, a retired accountant and real estate broker, embraced the idea. “I’ve lived a very full life,” she said. “I’m hoping I’m near the end. I need the help hospice gives.” Her sister died in Lumina’s care; she wants the same support. For older patients, Medicare pays the cost.But Lumina and other hospices that serve Benton County, Ore., are grappling with pandemic-fueled staff shortages, which have forced them at times to turn away new patients or delay their enrollment — as it did with Ms. Cotton. “It’s devastating,” Dr. Kao said.Another of her palliative care patients, Ruth Ann McCracken, 91, has declined physically and cognitively since suffering two strokes last year. Last month, her family made an appointment for hospice enrollment.The day before the appointment, Dr. Kao made a difficult call to Ms. McCracken’s daughter, explaining that Lumina had lost several nurses and could not safely admit new patients, perhaps for several weeks.Distressed and fearful of delay, the family followed her advice and made an appointment for enrollment with another local hospice, Samaritan Evergreen — only to have that meeting postponed, too, because of a nursing shortage.Ms. Cotton and Dr. Kao. “I’ve lived a very full life,” said Ms. Cotton, whose sister died Lumina’s care. “I’m hoping I’m near the end. I need the help hospice gives.” Alisha Jucevic for The New York TimesAn imitation rose sat on top of Ms. Cotton’s meal schedule at Regency Park Place.Alisha Jucevic for The New York TimesHospice staff shortages have developed across the country, and while closing to new patients is not a common response, “it’s getting worse,” said Edo Banach, the president and chief executive of the National Hospice and Palliative Care Organization. “If this goes on much longer, it’s going to happen more.”In a stressed health care system, some routine procedures or elective surgeries can be deferred without much harm. But more than half of the 2.3 million Medicare beneficiaries who die annually rely on hospice care, Medicare reported. To qualify for hospice, patients are deemed to be within six months of death, which cannot be postponed.Because many put off enrolling — American patients spend only a median of 18 days in hospice — even short waits can mean the loss of valuable care, from pain relief to help with household tasks.“It causes huge distress to tell a family, ‘We can’t serve you,’” said Barbara Hansen, who directs Oregon’s and Washington’s state hospice and palliative care organizations.The Center for Hospice Care in northern Indiana, which serves about 2,000 patients annually, has not had to turn away patients. But the smaller of its two inpatient units, a seven-bed hospice in Elkhart, has remained closed since July because of inadequate staff.The Center had planned to reopen it on Oct. 1, but a newly hired nurse left, so the unit remains unavailable. “I keep thinking it’s going to get better,” said Mark Murray, the Center’s president and chief executive.In New York State, “it’s a day-to-day jigsaw puzzle that puts a strain on the organization,” said Jeanne Chirico, the president and chief executive of the state’s Hospice and Palliative Care Association. Some hospices, which often pride themselves on enrolling new patients within a day, may take an additional day or two, since admissions are a labor-intensive process. They may send home aides for fewer hours.Many hospices are trying to recruit staff with signing bonuses; on the high end, EvergreenHealth Hospice Care in Seattle is offering $15,000 for registered nurses and $5,000 for licensed practical nurses. It has not lost much staff, said Brent Korte, the agency’s chief home care officer, “but we may go from our average care load of 12 patients per nurse to 15, temporarily.”The shortage, hospice administrators say, stems partly from an exhausted staff who visited patients’ homes through the worst of the pandemic, wearing full protective gear (once they could acquire it).Now Willamette Valley Hospice and Palliative Care, which also serves Corvallis, has lost 25 percent of its registered nurses since the pandemic began and has closed to new patients several times. “The fatigue, the disappointment is hitting us,” said Iria Nishimura, its executive director.Staff shortages also reflect economic pressures. Hospice nurses typically earn less than those employed by hospitals or traveling nurse agencies, which have raised their wages and bonuses as they also face a pandemic-related lack of nurses.In Oregon and Washington, for instance, a registered nurse working for a hospice might make $40 to $60 an hour, Ms. Hansen said. Agencies in those states are advertising up to $130 an hour for traveling nurses, she said, and one in Seattle is said to be dangling $275. “No hospice can match that,” she said.Dr. Kao has had to turn away patients or delay their enrollment in hospice, and it takes its toll on families, patients and caregivers alike. “It’s devastating,” she said.Alisha Jucevic for The New York TimesMs. Cotton rubbed her hands during a check-up with Dr. Kao.Alisha Jucevic for The New York TimesAt Lumina, where staff turnover has run 80 percent higher than usual, “we’ve had job postings for months without any applicants at all,” Dr. Kao said. It has begun offering $2,000 bonuses for registered nurses.Hospice aides, who are usually certified nursing assistants, are being lured away, too, sometimes leaving health care entirely. “When they’re getting paid in the low double digits and Amazon pays twice that, it’s hard to compete,” Mr. Banach said.Vaccination resistance is also shrinking hospice staffs in states — roughly 20, according to Leading Age, which represents nonprofit senior care providers — that mandate shots for health care workers.Hospice organizations have supported such mandates, and report that most workers have complied. But losing even a few resistant hospice staff — perhaps five percent in New York State so far, Ms. Chirico estimated — could bring temporary closures, wait lists or higher caseloads for the remaining staff. (Rules for the Biden administration’s federal mandate, governing all health care providers that receive Medicare and Medicaid funding, including hospices, are expected soon.)Hospice organizations received aid through several rounds of federal pandemic relief, but they need more to rebuild their staffs, Mr. Banach said. They could also benefit from changes in immigration law to help bolster the work force.Those kinds of changes take time, however. Hospice workers require specialized training. Even if scrambling hospices could hire nurses tomorrow, it would take several months for most to be fully ready to work with dying patients.“It’s going to be a tough six months,” Ms. Hansen predicted; other administrators interviewed found her statement optimistic.In Oregon, Samaritan Evergreen Hospice began receiving overflows from other local hospices and, for two weeks in September, was forced to practice triage. “We were taking the most ill, actively dying patients first,” said Karen Daley, the hospice director. Those who weren’t struggling with symptoms and had good support at home waited for several days.Evergreen’s staff has stabilized for now, and triage is no longer necessary, although it could resume at any time. Ms. McCracken, to her family’s relief, was enrolled on Oct. 8.Ms. Cotton prefers to use Lumina, so she is still waiting. “I don’t know how many people are ahead of me,” she said. “Basically, I have to wait for people to die, and that’s not a pleasant thought.”Dr. Kao and Ms. Cotton at Regency Park Place.Alisha Jucevic for The New York Times

Researchers have been studying how much care American adults will require as they age, and for how long.Say you’re a 65-year-old looking ahead, wondering about your health and your finances, pondering what life might be like in 20 years.You might get lucky, like Susan Green, a retired social worker. At 82, she enjoys hiking, golfing and cross-country skiing (although she has given up downhill) with her husband in Ketcham, Idaho. The only assistance they need: a weekly housekeeper.Or you might be as fortunate as Sally Dorst, also 82, a retired magazine editor who lives on the Upper West Side in Manhattan. A committed museum visitor and concertgoer (we couldn’t talk the first time I called because Ms. Dorst was attending the New York City Ballet’s reopening performance), she manages personal care and household tasks on her own, including toting heavy bags of litter home for her two cats.“I’ve always been pretty independent,” she said. “The only thing I need help with is that my ceilings are so tall that I can’t reach them.” (Her building superintendent replaces burned-out bulbs for her.)Most older Americans, however, eventually need assistance. Nancy Canu’s granddaughter, Renee Turner, moved into her home in Rochester Hills, Mich., five years ago to care for her. At 92, Ms. Canu takes multiple medications for heart failure, and joint pain makes it hard for her to walk more than a block, even while using a walker. Ms. Turner, 37, has gradually taken over household tasks, such as shopping, cooking, cleaning, doing the laundry and paying the bills.She administers her grandmother’s medications, drives her to doctors’ appointments, hovers nearby when she showers and helps her up the stairs. If Ms. Turner, a wedding singer and massage therapist, has to be away for more than an hour or two, she recruits another relative to step in.“It wasn’t a question,” Ms. Turner said. “I wanted to be here for her.” Still, she added, “it’s become my full-time job.”For years, researchers have tried to calculate what proportion of the aging population will need such extensive care. “Becoming frail and needing help with basic personal care is probably the greatest financial risk people face at older ages,” said Richard Johnson, the economist who directs the Program on Retirement Policy at the Urban Institute.A 2019 study he undertook for the federal Department of Health and Human Services, for example, found that over their lifetimes, about 70 percent of older adults will need help from family caregivers or paid aides or some combination, in their own homes or in long-term care facilities. Other surveys have reported roughly similar results.But such analyses often don’t distinguish between short rehab stays, perhaps after a knee replacement, and the years of round-the-clock care that is required for someone with deepening dementia.Ms. Turner and Ms. Canu hold hands. Ms. Turner helps her grandmother with her medications, drives her to doctor’s appointments and helps her up the stairs. Cydni Elledge for The New York Times“Even if you need a lot of care, if it’s for a short period, it’s not that big a deal,” said Alicia Munnell, an economist and director of the Center for Retirement Research at Boston College.Recent work by Dr. Munnell and her colleagues explored those nuances. Using data from the federal Health and Retirement Study as well as other federal surveys, they looked at both intensity and duration — how much help older Americans will need and for how long.Policy types perpetually lament Americans’ inadequate retirement savings; only about half of the U.S. population will be able to maintain their standard of living after they stop working, according to a Boston College index.But retirees can also overestimate their need for care, lowering their quality of life with unnecessary scrimping. “I think that’s actually a bigger risk than the more conventional idea of taking an around-the-world cruise and then ending up with nothing,” Dr. Munnell said.Her team assessed seniors’ lifetime care needs as low, medium or high intensity, based on how many so-called activities of daily living they needed assistance with. Then the researchers calculated how many older Americans would need help for short (up to a year) or medium durations (one to three years) or for longer than three years.Their results: Seventeen percent of 65-year-olds will need no long-term care. Almost one-quarter will develop severe needs, requiring many hours of help for more than three years.Most older people will fall between those poles, with 22 percent having only minimal needs. The largest group, 38 percent, can expect moderate needs — like support while they recover from a heart attack, after which they can again function independently.Unsurprisingly, the need for more intense or extended care hits some groups harder than others. People who attended college for some period fare far better than those without high school diplomas, the Boston College team found. Black and Hispanic seniors, reflecting entrenched economic and health inequities, are more apt than older white people to develop moderate or severe needs.And married people are less likely to need extensive care than those who are single. They have higher incomes, Dr. Munnell pointed out, and spouses provide “regular meals and someone nagging you to go see the doctor — all that having another person to care about your welfare entails.”Where an individual falls on this spectrum will determine whether such predictions feel reassuring or terrifying. But data from a second Boston College analysis veer toward the latter.“I wish all elderly people had someone like Renee to care for them,” Ms. Canu said. “We have a happy life, in spite of all the things that happen.”Cydni Elledge for The New York TimesThe researchers calculated how much care retirees would need, how much they could receive from family and how much they could afford to buy (at $22 an hour for a home health aide in 2018). The study determined that 36 percent of people in their late 60s could not cover even a year of minimal care without exhausting their resources; only 22 percent could cover severe needs.“There’s only a small chance that you’ll need care for an extended period,” Dr. Johnson said. “But a lot of people will need care for a shorter time, and that will take money.”Low-income people, who are less able to purchase help but more likely to need it, might qualify for Medicaid, which pays for long-term care. But that could mean a nursing home, because Medicaid waiting lists for home care are years long in some states. A few people, about 10 percent, have bought private long-term care insurance. Others will be left in a bind that financial planning can’t really address.“That’s something insurance is designed to correct,” Dr. Johnson said.When the Affordable Care Act passed in 2010, it contained a measure called the Class Act, a voluntary long-term care insurance program that never materialized. Critics feared an actuarial “death spiral”: If ailing workers only enrolled, costs would soon outstrip premiums paid in.To start a sustainable public insurance program for long-term care, “we’d have to make it mandatory,” Dr. Johnson said. “Everyone would have to contribute.” The payoff: “It would give people peace of mind.”Washington recently became the first state to establish such a program. Beginning next year, employees must contribute 0.58 percent of their earnings (self-employed workers could opt in, too), or about $290 in annual premiums on a $50,000 salary.It’s a modest program — starting in 2025, participants can receive up to $36,500 in benefits — but it’s a start on the kind of safety net that the Netherlands, Germany and South Korea already provide. Illinois, Minnesota and Hawaii are also discussing long-term care insurance, Dr. Johnson said.American families still bear the greatest brunt of responsibility for elder care. Ms. Canu’s family hopes to keep her in the house where she has lived for 44 years. If she had to pay a home health aide or move into assisted living, she or her children would face costs of thousands of dollars a month. That still might happen.But for now, she has her oldest grandchild. “I wish all elderly people had someone like Renee to care for them,” Ms. Canu said. “We have a happy life, in spite of all the things that happen.”

El deterioro cerebral puede comenzar años antes de la aparición de síntomas. El comportamiento cotidiano puede arrojar advertencias.Para saber cuáles son las probabilidades de padecer demencia en algún momento —una inquietud apremiante para muchas personas, sobre todo para quienes tienen antecedentes familiares— es necesario realizar pruebas médicas y consultar con los especialistas. Pero ¿qué tal si el comportamiento cotidiano, como omitir un par de pagos de la tarjeta de crédito o frenar a menudo al conducir, pudieran predecir ese riesgo?Actualmente se llevan a cabo varios experimentos para explorar esa posibilidad, lo que refleja la creciente concientización de que las patologías vinculadas a la demencia pueden comenzar años o incluso décadas antes de que aparezcan los síntomas.“La detección temprana es muy importante para poder actuar, justo en la etapa en la que podría resultar más eficaz”, señaló Sayeh Bayat, autora principal de un estudio sobre la conducta al volante financiado por los Institutos Nacionales de Salud y realizado en la Universidad de Washington en San Luis.Según los investigadores, dichos trabajos podrían ayudar a identificar a posibles voluntarios para las pruebas clínicas y ayudar a proteger a la gente mayor de la explotación económica y de otros peligros.En los últimos años, muchos medicamentos que se consideraban prometedores para tratar la demencia, sobre todo la enfermedad de Alzheimer, han fracasado en los ensayos. Según los investigadores, tal vez una razón sea que ya se administran demasiado tarde para ser de utilidad. Detectar los riesgos cuando el cerebro aún no ha sufrido tanto daño, podría proporcionarnos una reserva de posibles participantes que tuvieran la enfermedad de Alzheimer en una fase preclínica con los cuales se podrían poner a prueba tratamientos preventivos.Es posible que esto también mejore la vida cotidiana. “Se podría aumentar la capacidad de las personas para que conduzcan durante más tiempo y que las calles fueran más seguras para todos”, mencionó Bayat como ejemplo.Por el momento, la búsqueda de personas mayores con probabilidades de desarrollar alzhéimer o algún otro tipo de demencia tiene lugar principalmente en los contextos de investigación, donde los pacientes se enteran de su nivel de riesgo gracias a una combinación de pruebas genéticas, punciones lumbares o tomografías por emisión de positrones (PET, por su sigla en inglés) que detectan la sustancia amiloide en el cerebro, así como mediante cuestionarios relacionados con los antecedentes familiares..css-1xzcza9{list-style-type:disc;padding-inline-start:1em;}.css-3btd0c{font-family:nyt-franklin,helvetica,arial,sans-serif;font-size:1rem;line-height:1.375rem;color:#333;margin-bottom:0.78125rem;}@media (min-width:740px){.css-3btd0c{font-size:1.0625rem;line-height:1.5rem;margin-bottom:0.9375rem;}}.css-3btd0c strong{font-weight:600;}.css-3btd0c em{font-style:italic;}.css-w739ur{margin:0 auto 5px;font-family:nyt-franklin,helvetica,arial,sans-serif;font-weight:700;font-size:1.125rem;line-height:1.3125rem;color:#121212;}#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-family:nyt-cheltenham,georgia,’times new roman’,times,serif;font-weight:700;font-size:1.375rem;line-height:1.625rem;}@media (min-width:740px){#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-size:1.6875rem;line-height:1.875rem;}}@media (min-width:740px){.css-w739ur{font-size:1.25rem;line-height:1.4375rem;}}.css-9s9ecg{margin-bottom:15px;}.css-uf1ume{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-box-pack:justify;-webkit-justify-content:space-between;-ms-flex-pack:justify;justify-content:space-between;}.css-wxi1cx{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-flex-direction:column;-ms-flex-direction:column;flex-direction:column;-webkit-align-self:flex-end;-ms-flex-item-align:end;align-self:flex-end;}.css-12vbvwq{background-color:white;border:1px solid #e2e2e2;width:calc(100% – 40px);max-width:600px;margin:1.5rem auto 1.9rem;padding:15px;box-sizing:border-box;}@media (min-width:740px){.css-12vbvwq{padding:20px;width:100%;}}.css-12vbvwq:focus{outline:1px solid #e2e2e2;}#NYT_BELOW_MAIN_CONTENT_REGION .css-12vbvwq{border:none;padding:10px 0 0;border-top:2px solid #121212;}.css-12vbvwq[data-truncated] .css-rdoyk0{-webkit-transform:rotate(0deg);-ms-transform:rotate(0deg);transform:rotate(0deg);}.css-12vbvwq[data-truncated] .css-eb027h{max-height:300px;overflow:hidden;-webkit-transition:none;transition:none;}.css-12vbvwq[data-truncated] .css-5gimkt:after{content:’See more’;}.css-12vbvwq[data-truncated] .css-6mllg9{opacity:1;}.css-qjk116{margin:0 auto;overflow:hidden;}.css-qjk116 strong{font-weight:700;}.css-qjk116 em{font-style:italic;}.css-qjk116 a{color:#326891;-webkit-text-decoration:underline;text-decoration:underline;text-underline-offset:1px;-webkit-text-decoration-thickness:1px;text-decoration-thickness:1px;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:visited{color:#326891;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:hover{-webkit-text-decoration:none;text-decoration:none;}“La idea es hallar a las personas lo suficientemente rápido como para tomar cartas en el asunto y evitar o retrasar la aparición de la enfermedad”, comentó Emily Largent, especialista en ética médica e investigadora en política sanitaria en el Centro de Investigación sobre la Memoria de Pensilvania, en Filadelfia, en el cual se realizan muchos estudios de ese tipo.Se vislumbran otros tipos de pruebas de predicción, como los análisis de sangre sin prescripción médica que detecten la proteína Tau, otro biomarcador del alzhéimer, pero todavía faltan muchos años para que sean una realidad, dijo Largent.Eso nos deja solo las técnicas invasivas, como las punciones lumbares, o las que son costosas, como las tomografías PET. No es posible usar estos métodos para estudiar a grupos de muchas personas. “No están disponibles en todas partes”, explicó Bayat. “No están muy accesibles ni son muy adaptables”.Sin embargo, un dispositivo GPS en el auto podría monitorear de manera casi continua y a bajo costo el comportamiento al volante, lo cual proporcionaría los llamados biomarcadores digitales. “Los estudios han demostrado que las personas que padecen alzhéimer sintomático cambian su manera de conducir”, comentó Bayat. “Pero algunos cambios se presentan incluso antes”.El estudio de la Universidad de Washington reclutó a 64 adultos mayores con alzhéimer en fase preclínica, según se determinó por medio de punciones lumbares (los participantes no recibieron los resultados) y 75 cuyo nivel cognitivo se consideró normal.A lo largo de un año, los investigadores estudiaron el comportamiento de ambos grupos al volante —con qué frecuencia aceleraban o frenaban de manera repentina, si excedían el límite de velocidad o manejaban muy por debajo de él, si hacían movimientos bruscos— y su “perfil de conducción” (cantidad de recorridos, distancia promedio, destinos inusuales, recorridos en la noche). “Solo ahora, porque contamos con esta tecnología, podemos hacer este tipo de investigaciones”, señaló Bayat.En el estudio se descubrió que el comportamiento al volante y la edad podrían predecir el alzhéimer en fase preclínica un 88 por ciento del tiempo. Es posible que esos hallazgos incentiven reclutamientos para pruebas clínicas y permitan que se pueda hacer algo —como hacer sonar alguna alarma cuando el auto se desvía— a fin de ayudar a que los conductores se mantengan en su camino. En áreas en las que no hay un buen transporte público (la mayoría), eso podría contribuir con la independencia de las personas mayores.Jason Karlawish, geriatra y codirector del Centro de Investigación sobre la Memoria de Pensilvania, calificó ese estudio como “provocativo” y bien diseñado. “Los resultados indican que monitorear un comportamiento importante a nivel cognitivo en el mundo real puede ayudar a detectar las señales más tempranas y sutiles de un deterioro cognitivo incipiente”, escribió en un correo electrónico.De manera similar, en un estudio en el que se analizan los antecedentes clínicos y los informes crediticios de más de 80.000 beneficiarios de Medicare se demostró que era mucho más probable que las personas mayores que en algún momento eran diagnosticadas con alzhéimer se retrasaran en sus pagos de tarjetas de crédito que quienes pertenecían a una población parecida, pero que nunca recibieron ese diagnóstico. También era más probable que tuvieran evaluaciones crediticias de alto riesgo.“Nos motivaron las anécdotas en las que las personas descubren la demencia de algún familiar mediante un acontecimiento financiero catastrófico, como el embargo de la casa”, comentó Lauren Nicholas, la autora principal y economista sanitaria en la Escuela de Salud Pública de la Universidad de Colorado. “Esta podría ser una manera de identificar a los pacientes que están en riesgo”.Los problemas se presentaron antes, cuando omitieron al menos dos pagos consecutivos hasta seis años antes del diagnóstico y obtuvieron un crédito de alto riesgo de incumplimiento dos años y medio antes. Aunque estudios más pequeños ya han señalado la relación entre una mala gestión financiera autonotificada y la demencia, este es el más grande y el primero en usar información financiera verídica, añadió Nicholas.En Japón, los científicos han desarrollado una herramienta de aprendizaje automático que analiza las conversaciones telefónicas para detectar señales de alzhéimer en fase preclínica. Mediante el uso de archivos de audio grabados el año pasado durante algunas entrevistas, compararon las características vocales de los pacientes sanos —tono, intensidad, intervalos de silencio— con las de los de pacientes con alzhéimer y descubrieron que estos modelos podían predecir el nivel cognitivo.Los investigadores de IBM han captado un riesgo elevado en pruebas de escritura y han descubierto que los patrones y el uso de las palabras pronosticaron un diagnóstico posterior de alzhéimer. Algún día se podría usar cualquiera de estos hallazgos para realizar un diagnóstico temprano.Sin embargo, estos métodos plantean problemas sobre la privacidad. “¿A la gente no le incomoda que su banco o el seguro de su auto tenga esa información y la comparta?”, cuestionó Largent. “Llega a ser información médica que pasa a manos de personas que no son médicos”.En el Centro de Investigación sobre la Memoria de Pensilvania, donde la información realmente está en las manos de los profesionales de la salud, “después de las pruebas en la clínica, algunas personas con deterioro cognitivo expresan que les gustaría que las monitorearan”, afirmó. “Otras consideran que eso es algo en verdad intrusivo”.Durante años, los especialistas en bioética han abordado el tema de informar a los pacientes sobre los riesgos elevados de padecer alguna enfermedad aterradora para la cual aún no existe un tratamiento eficaz. Los estudios han demostrado que, en contextos de investigación, se pueden compartir los resultados de manera segura y eficaz. Sin embargo, sigue existiendo el temor de sentirse discriminados y estigmatizados.Incluso utilizando biomarcadores establecidos, como el amiloide en las tomografías PET, estos hallazgos anticipados no son definitivos, lo que los investigadores se esfuerzan en señalar a los pacientes. “No es necesario ni suficiente tener estos factores de riesgo”, explicó Largent. Las personas con amiloide elevado tienen un mayor riesgo, pero pueden no evolucionar hacia el deterioro cognitivo; las personas que no lo tienen pueden, sin embargo, desarrollar demencia.Aun así, dijo Largent, “en general creo que tener esa información puede ser útil para la gente”.En muchos estudios, Largent ha analizado lo que sucede cuando se les revela a los pacientes y a sus familiares las posibilidades de padecer demencia y descubrió que alrededor de una tercera parte de los pacientes reaccionan modificando su comportamiento referente a la salud, realizan algunas planeaciones legales y financieras o toman otras medidas de preparación. “Hacen cosas como actualizar su testamento, redactar instrucciones de previsión, practicar más ejercicio, quizás mudarse a vivir más cerca de algún hijo adulto”, mencionó.Paul Gondek, de 68 años, que vive en Filadelfia y enseña psicología social en la Universidad de Drexel, decidió conocer su estado de riesgo hace dos años, participando como voluntario en varios estudios del Penn Memory Center. El alzhéimer tiende a ser hereditario y, tras observar el lento declive de su madre a causa de la enfermedad, sabía que tenía más posibilidades de desarrollarla.Para alivio de Gondek, la tomografía PET mostró que no tenía cantidades elevadas de amiloide en su cerebro. Y una puntuación de riesgo calculada mostró que sus probabilidades de padecer alzhéimer a la edad de 85 años eran de aproximadamente un 19 por ciento, más alto que el 11 por ciento de riesgo de la población general, pero más bajo de lo que había temido.Si se dispusiera de otros indicadores tempranos a través de los registros de conducción o financieros u otros comportamientos y fueran confiables, dijo, “me gustaría usarlos. Preferiría saberlo antes que no”.

The pathologies underlying brain decline can begin years before symptoms emerge. Can everyday behavior provide warning?Learning your odds of eventually developing dementia — a pressing concern for many, especially those with a family history of it — requires medical testing and counseling. But what if everyday behavior, like overlooking a couple of credit card payments or habitually braking while driving, could foretell your risk?A spate of experiments is underway to explore that possibility, reflecting the growing awareness that the pathologies underlying dementia can begin years or even decades before symptoms emerge.“Early detection is key for intervention, at the stage when that would be most effective,” said Sayeh Bayat, the lead author of a driving study funded by the National Institutes of Health and conducted at Washington University in St. Louis.Such efforts could help identify potential volunteers for clinical trials, researchers say, and help protect older people against financial abuse and other dangers.In recent years, many once-promising dementia drugs, particularly for Alzheimer’s disease, have failed in trials. One possible reason, researchers say, is that the drugs are administered too late to be helpful. Identifying risks earlier, when the brain has sustained less damage, could create a pool of potential participants with “preclinical” Alzheimer’s disease, who could then test preventive measures or treatments.It could also bring improvements in daily life. “We could support people’s ability to drive longer, and have safer streets for everyone,” Ms. Bayat offered as an example.For now, the search for older people who are likely to develop Alzheimer’s or other dementias takes place mostly in research settings, where patients learn their risk status through some combination of genetic testing, spinal taps or PET scans to detect amyloid in the brain, as well as through questions about family history..css-1xzcza9{list-style-type:disc;padding-inline-start:1em;}.css-3btd0c{font-family:nyt-franklin,helvetica,arial,sans-serif;font-size:1rem;line-height:1.375rem;color:#333;margin-bottom:0.78125rem;}@media (min-width:740px){.css-3btd0c{font-size:1.0625rem;line-height:1.5rem;margin-bottom:0.9375rem;}}.css-3btd0c strong{font-weight:600;}.css-3btd0c em{font-style:italic;}.css-w739ur{margin:0 auto 5px;font-family:nyt-franklin,helvetica,arial,sans-serif;font-weight:700;font-size:1.125rem;line-height:1.3125rem;color:#121212;}#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-family:nyt-cheltenham,georgia,’times new roman’,times,serif;font-weight:700;font-size:1.375rem;line-height:1.625rem;}@media (min-width:740px){#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-size:1.6875rem;line-height:1.875rem;}}@media (min-width:740px){.css-w739ur{font-size:1.25rem;line-height:1.4375rem;}}.css-9s9ecg{margin-bottom:15px;}.css-uf1ume{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-box-pack:justify;-webkit-justify-content:space-between;-ms-flex-pack:justify;justify-content:space-between;}.css-wxi1cx{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-flex-direction:column;-ms-flex-direction:column;flex-direction:column;-webkit-align-self:flex-end;-ms-flex-item-align:end;align-self:flex-end;}.css-12vbvwq{background-color:white;border:1px solid #e2e2e2;width:calc(100% – 40px);max-width:600px;margin:1.5rem auto 1.9rem;padding:15px;box-sizing:border-box;}@media (min-width:740px){.css-12vbvwq{padding:20px;width:100%;}}.css-12vbvwq:focus{outline:1px solid #e2e2e2;}#NYT_BELOW_MAIN_CONTENT_REGION .css-12vbvwq{border:none;padding:10px 0 0;border-top:2px solid #121212;}.css-12vbvwq[data-truncated] .css-rdoyk0{-webkit-transform:rotate(0deg);-ms-transform:rotate(0deg);transform:rotate(0deg);}.css-12vbvwq[data-truncated] .css-eb027h{max-height:300px;overflow:hidden;-webkit-transition:none;transition:none;}.css-12vbvwq[data-truncated] .css-5gimkt:after{content:’See more’;}.css-12vbvwq[data-truncated] .css-6mllg9{opacity:1;}.css-qjk116{margin:0 auto;overflow:hidden;}.css-qjk116 strong{font-weight:700;}.css-qjk116 em{font-style:italic;}.css-qjk116 a{color:#326891;-webkit-text-decoration:underline;text-decoration:underline;text-underline-offset:1px;-webkit-text-decoration-thickness:1px;text-decoration-thickness:1px;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:visited{color:#326891;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:hover{-webkit-text-decoration:none;text-decoration:none;}“It’s all about finding people soon enough to intervene and prevent or delay the onset of the disease,” said Emily Largent, a medical ethicist and health policy researcher at the Penn Memory Center in Philadelphia, which undertakes many such studies.Other kinds of predictive tests are on the horizon, including over-the-counter blood tests for tau, another Alzheimer’s biomarker, but are several years away, Dr. Largent said.That leaves methods that are invasive, like spinal taps, or expensive, like PET scans. These approaches can’t be used to screen large groups of people. “They’re not available everywhere,” Ms. Bayat said. “They’re not very accessible or scalable.”But a GPS device in someone’s car could monitor driving behavior almost continuously at low cost, providing so-called digital biomarkers. “Studies have shown that driving changes in people with symptomatic Alzheimer’s,” Ms. Bayat said. “But some changes occur even earlier.”The Washington University study enrolled 64 older adults with preclinical Alzheimer’s, as determined by spinal taps (the results were not shared with participants), and 75 who were deemed cognitively normal.For a year, researchers measured both groups’ driving performance — how often they accelerated or braked aggressively, exceeded or fell well below the speed limit, made abrupt moves — and their “driving space” (number of trips, average distance, unique destinations, trips at night). “Only now, because we have these technologies, can we do this kind of research,” Ms. Bayat said.The study found that driving behavior and age could predict preclinical Alzheimer’s 88 percent of the time. Those findings could spur recruitment for clinical trials and allow interventions — like an alert when a car drifts — to help keep drivers on the road. In areas with inadequate public transportation (which is most areas), that could enhance seniors’ independence.Dr. Jason Karlawish, a geriatrician and co-director of the Penn Memory Center, called the study “provocative” and well designed. “The results suggest that monitoring a real-world, cognitively intense behavior can detect the earliest, subtle signs of emerging cognitive impairment,” he said in an email.Similarly, a study analyzing medical records and consumer credit reports for more than 80,000 Medicare beneficiaries showed that seniors who eventually received a diagnosis of Alzheimer’s disease were significantly more likely to have delinquent credit card payments than those who were demographically similar but never received such diagnoses. They also were more likely to have subprime credit scores.“We were motivated by anecdotes in which family members discover a relative’s dementia through a catastrophic financial event, like a home being seized,” said Lauren Nicholas, the lead author and a health economist at the University of Colorado School of Public Health. “This could be a way to identify patients at risk.”The problems appeared early, with at least two consecutive payments skipped as much as six years before a diagnosis, and subprime credit two and a half years before. Although smaller studies have pointed to an association between self-reported financial mismanagement and dementia, this is the largest and the first to use actual financial data, Dr. Nicholas added.In Japan, researchers have developed a machine-learning tool that scrutinizes phone conversations for signs of preclinical Alzheimer’s. Using audio files recorded during interviews last year, they compared healthy patients’ vocal features — pitch, intensity, silent intervals — with those with Alzheimer’s and found that the models could predict cognitive status.IBM researchers have picked up elevated risk in writing tests, finding that word patterns and usage predicted later Alzheimer’s diagnoses. Any of these findings might, one day, be used for early screening.Such approaches raise concerns about privacy, however. “Are people comfortable with a bank or an auto insurance company having and communicating that information?” Dr. Largent asked. “It becomes medical information in the hands of people who are not physicians.”At the Penn Memory Center, where information is indeed in health professionals’ hands, “some people who are cognitively unimpaired, after testing in the clinic, indicate they’d like to be monitored,” she said. “Others find that unbelievably intrusive.”Bioethicists have grappled for years with questions about informing patients of higher-than-normal risk for a feared disease for which there is, still, no effective treatment. Studies have shown that in research settings, results can be communicated safely and effectively. But fears of discrimination and stigma remain.Even using established biomarkers like amyloid in PET scans, these advance findings aren’t definitive, which researchers take pains to point out to patients. “It’s neither necessary nor sufficient to have these risk factors,” Dr. Largent explained. People with elevated amyloid have higher risk but may not progress to cognitive impairment; people without it can nevertheless develop dementia.Still, Dr. Largent said, “I generally think having that information can be useful to people.”In a number of studies, Dr. Largent has examined what happens when dementia risks are disclosed to patients and families. She has found that about one-third of patients respond to the information by changing their health behavior, undertaking legal and financial planning or taking other preparatory steps. “They do things like update their wills, draft advance directives, exercise more, maybe move closer to an adult child,” she said.Paul Gondek, 68, who lives in Philadelphia and teaches social psychology at Drexel University, chose to learn his risk status two years ago, volunteering for several studies at the Penn Memory Center. Alzheimer’s tends to run in families and, having watched his mother’s slow decline from the disease, he knew he had a higher chance of developing it.To Mr. Gondek’s relief, the PET scan showed that he did not have elevated amounts of amyloid in his brain. And a calculated risk score showed that his odds of Alzheimer’s by age 85 were about 19 percent — higher than the 11 percent risk for the general population, but lower than he had feared.If other early indicators were available through driving or financial records or other behaviors and were reliable, he said, “I would want to use them. I’d rather know than not.”

Al aumentar los casos y las hospitalizaciones de personas de la tercera edad, los expertos ofrecen una advertencia: la covid puede tener un aspecto diferente en las personas de edad avanzada.Un día de marzo de 2020, Rosemary Bily se cansó tanto que apenas podía levantarse de la cama. “Dormía mucho”, dijo su yerno Rich Lamanno. “Estuvo exhausta durante casi todo un mes”. Bily, que ahora tiene 86 años, también presentó náuseas y diarrea, junto con una tos leve, y salió adelante en gran parte con Tylenol y Gatorade.Días más tarde, su marido, Eugene Bily, de 90 años, empezó a toser y también se aletargó.De no haber sido por una reunión familiar días antes, los hijos de los Bily no habrían sospechado del nuevo coronavirus. Podrían haber culpado a la gripe, o simplemente al avance de la edad. “Lo que oímos en la televisión fue ‘fiebre alta y dificultad para respirar’, pero ellos no tenían ninguno de esos síntomas”, recuerda Lamanno.Sin embargo, una decena de invitados se habían reunido en un restaurante de Rockville Centre, Long Island, a principios de ese mes para celebrar el cumpleaños de una sobrina, y uno a uno la mayoría de ellos cayó enfermo de covid, incluidos Lamanno y su esposa.Cuando los síntomas se extendieron, los médicos dijeron a la preocupada familia que lo más probable es que los Bily tuvieran COVID-19. Como las pruebas eran escasas en ese momento, ninguno de los dos se sometió a ellas; la familia también temía llevarlos a los hospitales locales, que estaban desbordados. No obstante, las pruebas posteriores de anticuerpos confirmaron que Eugene y Rosemary Bily, que viven en Oceanside, Nueva York, habían contraído y sobrevivido al virus mucho antes de que se aprobara o estuviera disponible cualquier vacuna.Lamanno fuera de la casa de sus suegros en OceansideGregg Vigliotti para The New York TimesLa población mayor de 65 años, más vulnerable a los efectos del virus, se vacunó pronto contra la COVID-19 y tiene la tasa más alta de Estados Unidos: más del 80 por ciento está totalmente vacunada. Sin embargo, con el nuevo aumento de las infecciones, así como el incremento de las hospitalizaciones entre los adultos mayores, un nuevo estudio a gran escala publicado en Journals of Gerontology proporciona una advertencia oportuna: la covid puede tener un aspecto diferente en los pacientes de edad avanzada.“La gente espera que haya fiebre, tos y dificultad para respirar”, afirma Allison Marziliano, autora principal del estudio. Es psicóloga social y de la salud en los Institutos Feinstein de Investigación Médica, que forman parte del gran sistema Northwell Health del estado de Nueva York.Pero cuando los investigadores rastrearon las historias clínicas electrónicas de casi 5000 personas, todas mayores de 65 años, que fueron hospitalizadas por covid en una decena de hospitales de Northwell en marzo y abril de 2020, descubrieron que un tercio había llegado con síntomas inesperados.Al buscar a través de los registros mediante el uso de un software de lenguaje, el equipo encontró que alrededor de una cuarta parte de los pacientes mayores informó de un deterioro funcional. “Se trataba de caídas, fatiga, debilidad, dificultad para caminar o levantarse de la cama”, explicó Marziliano.El once por ciento experimentó alteraciones del estado mental: “confusión, agitación, olvido, letargo”, agregó. Alrededor de la mitad del grupo con síntomas atípicos también sufría al menos uno de los problemas clásicos de la COVID-19: fiebre, problemas para respirar, tos.“Los médicos deberían saberlo, los adultos mayores deberían saberlo, sus cuidadores deberían saberlo: si se observan ciertos síntomas atípicos, podría tratarse de covid”, advirtió Marziliano.La tasa de síntomas atípicos aumentó de manera significativa con la edad, al afectar a cerca del 31 por ciento de las personas de 65 a 74 años, pero a más del 44 por ciento de los mayores de 85 años. Esos síntomas eran más frecuentes en las mujeres, en los pacientes negros (pero no en los hispanos) y en los que padecían otras enfermedades crónicas, en particular diabetes o demencia.Dado que las personas del grupo atípico eran menos propensas a experimentar problemas respiratorios y a requerir ventilación, era menos probable que necesitaran cuidados intensivos. Pero ambos grupos pasaron casi diez días en el hospital, y aproximadamente un tercio de cada grupo murió.Eugene Bily, a la derecha, recibe cuidados paliativos a domicilio, y Rosemary Bily se ha recuperado totalmente del virus. “A ella le va bien”, dijo Lamanno. “Ha retomado su vida normal”.Gregg Vigliotti para The New York Times“Estas personas estuvieron en el hospital el mismo tiempo”, afirmó Marziliano. “Su tasa de mortalidad fue igual de alta. Así que esto no debería descartarse”.La investigación refleja los hallazgos de otros estudios más pequeños sobre personas mayores realizados al principio de la pandemia en Estados Unidos y Europa. Durante un brote de covid en una residencia de ancianos de Providence, Rhode Island, por ejemplo, un estudio de la Universidad de Brown descubrió que el síntoma más común era la pérdida de apetito, seguido de letargo, diarrea y fatiga.“No necesariamente nos sorprende esto”, comentó Maria Carney, geriatra y autora del estudio de Northwell. “Los adultos mayores no siempre se presentan como otros adultos. Puede que no tengan fiebre. Sus metabolismos son diferentes”.Los diabéticos más jóvenes, por ejemplo, pueden sudar y experimentar palpitaciones si baja su nivel de azúcar en la sangre, explicó Carney. Una persona mayor con una disminución del azúcar en la sangre podría desmayarse sin previo aviso. Las personas mayores que sufren depresión pueden tener pérdida de apetito o insomnio, pero no necesariamente sentirse tristes.En mayo de 2020, Carney recibió noticias de una hija preocupada por su madre, que tenía más de 80 años y se había debilitado de manera repentina. “No tenía fiebre ni tos, pero no era ella misma”, recordó Carney. Los médicos de una sala de urgencias local le diagnosticaron una infección del tracto urinario y le recetaron antibióticos, informó la hija. Sin embargo, cinco días después, el estado de su madre empeoraba. “Necesita una prueba de covid”, aconsejó Carney.Diagnosticar con rapidez la COVID-19 en pacientes de edad avanzada puede suponer una gran diferencia. “Ahora tenemos cosas que ofrecer que no teníamos en la primera oleada”, dijo Eleftherios Mylonakis, jefe de enfermedades infecciosas de la Facultad de Medicina Warren Alpert de la Universidad de Brown, que dirigió el estudio de la residencia de ancianos de Providence. “Tenemos una mejor comprensión, más tratamientos y mejor apoyo”.Entre las mejoras: el uso de fármacos anticoagulantes para evitar la formación de coágulos y el uso de anticuerpos monoclonales (el tratamiento que recibió el expresidente Donald Trump en el hospital Walter Reed de Bethesda, Maryland) que refuerzan el sistema inmunitario. Sin embargo, añadió Mylonakis, “es primordial iniciar cualquier tipo de tratamiento de manera temprana”.Entender que algo tan vago como la debilidad, la confusión o la pérdida de apetito puede ser señal de una infección por covid también puede ayudar a proteger a amigos y familiares, que pueden aislarse y hacerse las pruebas ellos mismos. “No solo ayuda al individuo, sino que también puede contener la propagación del virus”, afirma Mylonakis.Un diagnóstico de covid también puede evitar pruebas y procedimientos innecesarios. “Podemos evitar pruebas innecesarias, pinchar y hurgar y hacer tomografías”, dijo Carney. Las tomografías son caras, engorrosas y llevan tiempo de programación y análisis; un hisopo nasal para covid es rápido, relativamente barato y ahora está ampliamente disponible.Con la generalización de la vacunación, los síntomas de la COVID-19 en los adultos mayores pueden ser aún más sutiles. La fiebre es fácil de medir, y la dificultad para respirar enviará a cualquiera a un servicio de urgencias, señaló Carney, mientras que “no necesariamente notamos si alguien ha dejado de comer”.Su consejo, para los pacientes de edad avanzada y sus cuidadores y médicos, es estar atentos a los cambios que se producen de manera apresurada, en cuestión de días. “Cuando hay un cambio en el comportamiento, físico o cognitivo, puede no parecer una infección, pero hay que mantener la covid en lo más alto de la lista”, recomendó.La mujer con la hija preocupada en efecto había contraído el virus; murió en un hospital.Pero los Bily se recuperaron y siguen viviendo en su casa de dos pisos de Oceanside. Eugene Bily tuvo muchos problemas de salud incluso antes de la pandemia. En los últimos 18 meses, fue sometido a dos operaciones de cadera y a varias otras hospitalizaciones. En junio, empezó a recibir cuidados paliativos en casa.No obstante, Rosemary Bily se recuperó por completo del virus. A sus 86 años, va en auto al supermercado y a la farmacia, visita su peluquería cada semana, se mantiene en contacto con la familia a través del iPad y el celular y ayuda a cuidar a sus nietas.“Le va bien”, comentó Lamanno. “Ha retomado su vida normal”.

With infections increasing once more, and hospitalization rising among older adults, health experts offer a timely warning: a coronavirus infection can look different in older patients.One day in March of 2020, Rosemary Bily suddenly grew so tired she could barely get out of bed. “She slept a lot,” said her son-in-law Rich Lamanno. “She was wiped out for most of a month.” Ms. Bily, now 86, also developed nausea and diarrhea, along with a slight cough, and subsisted mostly on Tylenol and Gatorade.A few days later her husband, Eugene Bily, 90, started coughing and became lethargic as well.Had it not been for a family gathering a few days earlier, the Bilys’s children would not have suspected the new coronavirus. They might have blamed the flu, or simply advancing age. “What we heard on TV was ‘high fever, can’t breathe’ — and they had neither,” Mr. Lamanno recalled.But about a dozen guests had gathered at a restaurant in Rockville Centre, Long Island, earlier that month to celebrate a niece’s birthday, and one by one most of them fell ill with Covid, including Mr. Lamanno and his wife.As the symptoms spread, doctors told the worried family that the Bilys most likely had Covid-19. Because tests were in short supply at the time, neither was tested; the family also feared taking them to overflowing local hospitals. But subsequent antibody tests confirmed that Eugene and Rosemary Bily, who live in Oceanside, N. Y., had contracted and survived the virus.Mr. Lamanno outside his in-laws’ home in Oceanside.Gregg Vigliotti for The New York TimesThe population over 65, most vulnerable to the virus’s effects, got an early start on Covid vaccination and has the highest rate in the country — more than 80 percent are fully vaccinated. But with infections increasing once more, and hospitalization rising among older adults, a large-scale new study in the Journals of Gerontology provides a timely warning: Covid can look different in older patients.“People expect fever, cough, shortness of breath,” said Allison Marziliano, lead author of the study. She is a social and health psychologist at the Feinstein Institutes for Medical Research, part of the large Northwell Health system across New York State.But when the researchers combed through the electronic health records of nearly 5,000 people, all over the age of 65, who were hospitalized for Covid at a dozen Northwell hospitals in March and April of 2020, they found that one-third had arrived with other symptoms, unexpected ones.The team, searching through records using language software, found that about one-quarter of older patients reported a functional decline. “This was falls, fatigue, weakness, difficulty walking or getting out of bed,” Dr. Marziliano said.Eleven percent experienced altered mental status — “confusion, agitation, forgetfulness, lethargy,” she said. About half the group with atypical symptoms also suffered from at least one of the classic Covid problems — fever, trouble breathing, coughing.“Clinicians should know, older adults should know, their caregivers should know: If you see certain atypical symptoms, it could be Covid,” Dr. Marziliano said.The rate of atypical symptoms rose significantly with age, affecting about 31 percent of those aged 65 to 74, but more than 44 percent of those over 85. These symptoms occurred more commonly in women, in Black patients (but not in Hispanics) and in those who had other chronic diseases, particularly diabetes or dementia.Because people in the atypical group were less likely to experience breathing problems and require ventilation, they were less likely to need intensive care. But both groups spent about 10 days in the hospital, and roughly one-third of each group died.Mr. Bily, at right, receives home hospice care, and Mrs. Bily has fully recovered from the virus. “She’s doing well,” Mr. Lamanno said. “She has resumed her normal life.”Gregg Vigliotti for The New York Times“These people were in the hospital for as long,” Dr. Marziliano said. “Their mortality rate was as high. So this shouldn’t be dismissed.”The research mirrors findings from other, smaller studies of older people conducted early in the pandemic in the United States and Europe. During a Covid outbreak in a nursing home in Providence, R.I., for instance, a Brown University study found that the most common symptom was loss of appetite, followed by lethargy, diarrhea and fatigue.“We’re not necessarily surprised by this,” said Dr. Maria Carney, a geriatrician and an author of the Northwell study. “Older adults don’t always present like other adults. They may not mount a fever. Their metabolisms are different.”Younger diabetics, for instance, may become sweaty and experience palpitations if their blood sugar falls, Dr. Carney explained. An older person with low blood sugar could faint without warning. Older people who suffer from depression may have appetite loss or insomnia but not necessarily feel sad..css-1xzcza9{list-style-type:disc;padding-inline-start:1em;}.css-3btd0c{font-family:nyt-franklin,helvetica,arial,sans-serif;font-size:1rem;line-height:1.375rem;color:#333;margin-bottom:0.78125rem;}@media (min-width:740px){.css-3btd0c{font-size:1.0625rem;line-height:1.5rem;margin-bottom:0.9375rem;}}.css-3btd0c strong{font-weight:600;}.css-3btd0c em{font-style:italic;}.css-w739ur{margin:0 auto 5px;font-family:nyt-franklin,helvetica,arial,sans-serif;font-weight:700;font-size:1.125rem;line-height:1.3125rem;color:#121212;}#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-family:nyt-cheltenham,georgia,’times new roman’,times,serif;font-weight:700;font-size:1.375rem;line-height:1.625rem;}@media (min-width:740px){#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-size:1.6875rem;line-height:1.875rem;}}@media (min-width:740px){.css-w739ur{font-size:1.25rem;line-height:1.4375rem;}}.css-9s9ecg{margin-bottom:15px;}.css-uf1ume{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-box-pack:justify;-webkit-justify-content:space-between;-ms-flex-pack:justify;justify-content:space-between;}.css-wxi1cx{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-flex-direction:column;-ms-flex-direction:column;flex-direction:column;-webkit-align-self:flex-end;-ms-flex-item-align:end;align-self:flex-end;}.css-12vbvwq{background-color:white;border:1px solid #e2e2e2;width:calc(100% – 40px);max-width:600px;margin:1.5rem auto 1.9rem;padding:15px;box-sizing:border-box;}@media (min-width:740px){.css-12vbvwq{padding:20px;width:100%;}}.css-12vbvwq:focus{outline:1px solid #e2e2e2;}#NYT_BELOW_MAIN_CONTENT_REGION .css-12vbvwq{border:none;padding:10px 0 0;border-top:2px solid #121212;}.css-12vbvwq[data-truncated] .css-rdoyk0{-webkit-transform:rotate(0deg);-ms-transform:rotate(0deg);transform:rotate(0deg);}.css-12vbvwq[data-truncated] .css-eb027h{max-height:300px;overflow:hidden;-webkit-transition:none;transition:none;}.css-12vbvwq[data-truncated] .css-5gimkt:after{content:’See more’;}.css-12vbvwq[data-truncated] .css-6mllg9{opacity:1;}.css-qjk116{margin:0 auto;overflow:hidden;}.css-qjk116 strong{font-weight:700;}.css-qjk116 em{font-style:italic;}.css-qjk116 a{color:#326891;-webkit-text-decoration:underline;text-decoration:underline;text-underline-offset:1px;-webkit-text-decoration-thickness:1px;text-decoration-thickness:1px;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:visited{color:#326891;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:hover{-webkit-text-decoration:none;text-decoration:none;}In May of 2020, Dr. Carney heard from a daughter worried about her mother, who was in her 80s and had suddenly grown weaker. “She didn’t have fever or a cough, but she was just not herself,” Dr. Carney recalled. Doctors at a local emergency room had diagnosed a urinary tract infection and prescribed antibiotics, the daughter reported. But five days later, her mother’s condition was worsening. “She needs a Covid test,” Dr. Carney advised.Diagnosing Covid quickly in older patients can make a world of difference. “We have things to offer now that we didn’t have in the first wave,” said Dr. Eleftherios Mylonakis, chief of infectious diseases at Warren Alpert Medical School of Brown University, who led the Providence nursing home study. “We have better understanding, more treatments, better support.”Among the improvements: using anticoagulant drugs to prevent clotting and using monoclonal antibodies (the treatment that former President Trump received at Walter Reed Hospital) that strengthen the immune system. But, Dr. Mylonakis added, “It’s paramount to start any kind of treatment early.”Understanding that something as vague as weakness, confusion or appetite loss might signal a Covid infection can also help protect friends and family, who can then isolate and get tested themselves. “It not only helps the individual, but also can contain the spread of the virus,” Dr. Mylonakis said.A Covid diagnosis can also ward off needless tests and procedures. “We can avoid unnecessary testing, poking and prodding, CT scans,” Dr. Carney said. CT scans are expensive, burdensome and take time to schedule and analyze; a nasal swab for Covid is quick, relatively cheap and now widely available.With widespread vaccination, the symptoms of Covid-19 in older adults may become even more subtle. Fevers are easy to measure, and difficulty breathing will send anyone to an emergency room, Dr. Carney pointed out, whereas “we don’t necessarily notice if someone has stopped eating.”Her counsel, for older patients and their caregivers and doctors, is to stay alert for changes that occur quickly, over a matter of days. “When there’s a change in behavior, physical or cognitive, it may not look like an infection, but keep Covid at the top of your list,” she said.The woman with the worried daughter had indeed contracted the virus; she died in a hospital.But the Bilys pulled through and still live in their Oceanside split-level home. Mr. Bily contended with many health problems even before the pandemic. In the past 18 months, he underwent two hip surgeries and several other hospitalizations. In June, he began receiving home hospice care.Rosemary Bily, however, has fully recovered from the virus. At 86, she drives to the supermarket and the drugstore, visits her hair salon weekly, keeps in touch with family via iPad and smartphone and helps care for her granddaughters.“She’s doing well,” Mr. Lamanno said. “She has resumed her normal life.”

Staffing shortages have long plagued the home care industry. But the pandemic has intensified the problem.Almost daily, Terry Driscoll drives 40 minutes from her home in Yarmouth Port, Mass., to see her husband, Ken, in his memory care facility.That’s not where she wants him to be. The Driscolls, both 72, have been a couple since college. When he was diagnosed with Alzheimer’s disease almost a decade ago, “my plan, always, was to keep him at home,” said Ms. Driscoll, a nurse. “I thought, ‘I can handle this.’”For years she managed, cutting back to part-time work, then retiring earlier than planned and relying on adult day programs and support groups through a local nonprofit. As her husband’s needs increased and she could not leave him for even short periods, she hired two part-time independent home care aides. “They were both wonderful,” she said.But when the pandemic hit, she began to fear having outsiders in their home, and she let the aides go. Her daughter moved in for several months to help. In June, after Mr. Driscoll was briefly hospitalized, the family transferred him to an assisted living community with memory care while he regained his stability and the family caught its breath.“My goal is to bring him home,” Ms. Driscoll said. Her dilemma: She cannot shoulder his exhausting care alone, and she cannot find home care aides to hire.Word-of-mouth has produced no candidates. Local agencies charging $30 to $34 an hour tell her they have no workers available. “They all say the same thing: ‘We’ll put you on the waiting list, call us after Labor Day,’” Ms. Driscoll said. So her husband, at daunting expense, remains institutionalized.For years, staffing shortages have plagued the home care industry — a hodgepodge of for-profit companies and chains, nonprofit programs and publicly funded care through Medicaid, all operating under a confusing welter of state and federal regulations, plus an uncharted “gray market” of clients who avoid agencies and hire privately. But Covid-19 has intensified the problem.“I’ve never heard such frustration over finding workers, and I’ve been doing this for 20 years,” said Vicki Hoak, executive director of the Home Care Association of America, whose 4,000 member agencies collectively employ about 500,000 people.The Bureau of Labor Statistics estimated job losses of 342,000 in the direct care work force last year — including nursing home and other residential care and home care staff. (Typically, employment in these categories rises each year.) The losses came either through layoffs or from people resigning because of health problems or fears related to Covid, lack of child care and other impediments.By the end of 2020, employment in home care had rebounded and was only 3 percent below prepandemic levels, according to an analysis by PHI, a direct-care advocacy and research group..css-1xzcza9{list-style-type:disc;padding-inline-start:1em;}.css-3btd0c{font-family:nyt-franklin,helvetica,arial,sans-serif;font-size:1rem;line-height:1.375rem;color:#333;margin-bottom:0.78125rem;}@media (min-width:740px){.css-3btd0c{font-size:1.0625rem;line-height:1.5rem;margin-bottom:0.9375rem;}}.css-3btd0c strong{font-weight:600;}.css-3btd0c em{font-style:italic;}.css-w739ur{margin:0 auto 5px;font-family:nyt-franklin,helvetica,arial,sans-serif;font-weight:700;font-size:1.125rem;line-height:1.3125rem;color:#121212;}#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-family:nyt-cheltenham,georgia,’times new roman’,times,serif;font-weight:700;font-size:1.375rem;line-height:1.625rem;}@media (min-width:740px){#NYT_BELOW_MAIN_CONTENT_REGION .css-w739ur{font-size:1.6875rem;line-height:1.875rem;}}@media (min-width:740px){.css-w739ur{font-size:1.25rem;line-height:1.4375rem;}}.css-9s9ecg{margin-bottom:15px;}.css-uf1ume{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-box-pack:justify;-webkit-justify-content:space-between;-ms-flex-pack:justify;justify-content:space-between;}.css-wxi1cx{display:-webkit-box;display:-webkit-flex;display:-ms-flexbox;display:flex;-webkit-flex-direction:column;-ms-flex-direction:column;flex-direction:column;-webkit-align-self:flex-end;-ms-flex-item-align:end;align-self:flex-end;}.css-12vbvwq{background-color:white;border:1px solid #e2e2e2;width:calc(100% – 40px);max-width:600px;margin:1.5rem auto 1.9rem;padding:15px;box-sizing:border-box;}@media (min-width:740px){.css-12vbvwq{padding:20px;width:100%;}}.css-12vbvwq:focus{outline:1px solid #e2e2e2;}#NYT_BELOW_MAIN_CONTENT_REGION .css-12vbvwq{border:none;padding:10px 0 0;border-top:2px solid #121212;}.css-12vbvwq[data-truncated] .css-rdoyk0{-webkit-transform:rotate(0deg);-ms-transform:rotate(0deg);transform:rotate(0deg);}.css-12vbvwq[data-truncated] .css-eb027h{max-height:300px;overflow:hidden;-webkit-transition:none;transition:none;}.css-12vbvwq[data-truncated] .css-5gimkt:after{content:’See more’;}.css-12vbvwq[data-truncated] .css-6mllg9{opacity:1;}.css-qjk116{margin:0 auto;overflow:hidden;}.css-qjk116 strong{font-weight:700;}.css-qjk116 em{font-style:italic;}.css-qjk116 a{color:#326891;-webkit-text-decoration:underline;text-decoration:underline;text-underline-offset:1px;-webkit-text-decoration-thickness:1px;text-decoration-thickness:1px;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:visited{color:#326891;-webkit-text-decoration-color:#326891;text-decoration-color:#326891;}.css-qjk116 a:hover{-webkit-text-decoration:none;text-decoration:none;}The bigger problem, industry sources say, is growing demand. Whereas nursing home occupancy has declined for years and fell further during the pandemic, and assisted living is at about 75 percent of capacity, the number of people seeking home care keeps increasing.More than 800,000 older and disabled people who qualify for Medicaid are on state waiting lists for home care. Agencies serving private-pay clients are turning away business.Congregate living looks less attractive after Covid, as residents died and family members were locked out for months. Moreover, a return to workplaces means that some adult children can no longer provide elder care. Even before the pandemic, the Bureau of Labor Statistics projected the addition of one million home care jobs by 2029.“The surge is here and we can’t meet the need,” Ms. Hoak said. “It’s disheartening.”Ms. Driscoll worries that trying to provide for Ken around the clock, unassisted, might endanger her own health. “You can be the strongest person in the world, but after a while you say, ‘I need a break,’” she said.Phyllis B. Dooney for The New York TimesIn response, many agencies are offering signing bonuses to employees and those who refer new hires, usually paid out over several months. A $500 incentive is common, Ms. Hoak said, but one franchise of the national chain Home Instead dangled $1,200.Seniors Helping Seniors, with more than 100 franchisees in 30 states, has begun paying new employees $100 to $500 bonuses after three months, earmarking a portion of that amount as a donation to local Alzheimer’s Association organizations.Its franchise operators employ about 7,000 home care aides, most over age 55. “We’re looking to add another 1,000 to 1,500 caregivers through this program,” said Namrata Yocom-Jan, its president.In eastern Tennessee, where Ray Bales operates two Seniors Helping Seniors franchises, 11 people applied within a week after he advertised $200 bonuses on Facebook, he said. He hopes to attract 30 to 40 new workers. (None objected to funding the company’s philanthropy with $50 from their prospective bonuses, he said.)But bonuses may not retain newcomers working in a field with notoriously high turnover — more than 80 percent in 2018, the Home Care Association found. Since then, turnover has fallen; still, two-thirds of agency employees have left each year.Some aides are taking advantage of higher pay in retail, fast food and other industries. Others have moved to independent work, avoiding intermediaries who pocket at least half of what clients pay.Wendy Gullickson, a licensed practical nurse in Wellfleet, Mass., spent only a few months as a $13-an-hour agency worker before discovering that she could make $25 as a private aide — still less than local agencies charge. (Home care cost an average of $23 to $24 an hour nationally last year, but $29 to $30 in Massachusetts.)To advocates, therefore, the key to enticing new aides into home care is not a mystery. “What they need is a competitive wage, because they can make as much or more in other sectors with full-time hours,” said Robert Espinoza, vice president of policy at PHI.In 2018, the nation’s estimated 2.8 million home care aides, most of them women of color and about one-third immigrants, earned a median $12 an hour and $17,200 annually. Very few received benefits; more than half relied on food stamps, Medicaid or other public assistance.“I don’t think a bonus is going to cut it anymore,” said April Verrett, president of SEIU Local 2015, which represents 400,000 home care workers in California’s Medicaid program. “Workers are choosing not to take jobs unless they’re guaranteed a family-sustaining wage.”The union’s new contracts with counties will raise wages to about $16 to $18 an hour within three years, with improved health benefits.Given the worsening shortage, industry groups are grappling with how to respond. “How do we elevate this profession?” Ms. Hoak asked. “We recognize the critical condition we’re in today.” Yet private-pay home care is already unaffordable for many middle-class families.President Biden’s proposed $400 billion Better Care Better Jobs Act would expand Medicaid eligibility for home care and improve wages, benefits and training for workers. It faces stiff opposition in Congress, however.Leading Age, which represents nonprofit senior care providers, has suggested a system of temporary visas and guest worker programs to bring elder care workers from overseas. And the Home Care Association supports a bipartisan bill providing a $5,000 federal tax credit (up from $3,000 in previous versions) to offset costs for family caregivers.But those efforts, even if they succeed, can’t help Terry Driscoll bring her husband home this summer, so they can have dinner on their deck and drive to the beach together.She worries that continuing to pay $10,000 a month for memory care will undermine her financial security. But she also fears that trying to provide round-the-clock care by herself could endanger her own health. “You can be the strongest person in the world, but after a while you say, ‘I need a break,’” she said.She keeps asking friends for leads and calling local home care agencies. They say they might be able to supply an aide by October.

July 8: This article was updated to note a change in the F.D.A.’s recommended use for Aduhlem that was announced after it was first published.Dr. Kenneth Koncilja, a geriatrician at the Cleveland Clinic, saw the announcement from the Food and Drug Administration on June 7, on Twitter: The agency had approved Aduhelm (aducanumab), the first drug to treat Alzheimer’s disease to be approved in nearly 20 years.The calls from patients’ spouses and family members began within the hour, and have not stopped. “I was shocked at how fast the word spread — ‘Hey, is this something we can use? When can we get it?’” Dr. Koncilja recalled. “There’s a mix of excitement, anxiety and desperation.”His first call that morning came from Joan Morehouse, 78, who has been caring for her 71-year-old husband, James, in their home in North Perry, Ohio, since his Alzheimer’s diagnosis four years ago. She has watched him get lost on familiar drives and forget their grandchildren’s names.When her brother and her son both emailed her a news article about the F.D.A. action, she recalled, “I said, ‘Oh, my God, my prayers have been answered.’”It fell to Dr. Koncilja to explain the complexities: That Aduhelm is not yet widely available. That protocols determining which patients qualify have yet to be developed. That the clinical trial data was ambiguous and that the drug might bring no noticeable improvements in daily life. That its side effects include brain swelling and bleeding.And that its maker, Biogen, estimates the annual cost of monthly intravenous infusions at $56,000, plus expensive scans and tests.“It’s a more difficult question than I’ve ever had before,” Dr. Koncilja said. Patients ask him how their lives will change, “and I don’t know how to answer.”In the weeks since the F.D.A.’s action, which initially placed virtually no restrictions on prescribing the drug, geriatricians, neurologists and other doctors across the country have been fielding similar questions.Aduhelm has generated intense controversy. Biogen stopped two trials in 2019 because they demonstrated no benefit, then submitted an F.D.A. application after a later analysis of one trial showed slightly slower cognitive decline at high doses.In a letter to the F.D.A., the American Geriatrics Society argued that approval was “premature given the lack of sufficient evidence.” The Society for Post-Acute and Long-Term Care Medicine later came to a similar conclusion.The F.D.A.’s own advisory committee strongly recommended against approval, and three member scientists resigned in protest when the agency overrode its advice. A new survey of 200 neurologists and primary care doctors has found that most disagreed with the F.D.A. decision.Senators Elizabeth Warren, Democrat of Massachusetts, and Bill Cassidy, Republican of Louisiana, have called for a hearing, concerned that spending billions on Aduhelm could undermine Medicare. The House Committee on Oversight and Reform has announced an investigation into the drug’s approval and pricing.On Thursday, reacting to widespread criticism, the F.D.A. narrowed the drug’s recommended use to those with mild cognitive impairment or mild Alzheimer’s disease, noting that there was no data on its safety or effectiveness in later stages of dementia.Dr. Stephen Salloway talked with Henry Magendantz, a participant in Aduhelm’s clinical trial, and his wife, Kathy Jellison, at Butler Hospital in Providence, R.I.Kayana Szymczak for The New York TimesGiven all that, should older adults consider Aduhelm? “The F.D.A. has passed the determination along to the American family,” said Dr. Jason Karlawish, co-director of the Penn Memory Center, who, with a number of other doctors, publicly opposed the drug’s approval.Penn Memory doctors are receiving anxious inquiries, too. Geeta Simons, a musician in Philadelphia whose 80-year-old father has Alzheimer’s, messaged her father’s neurologist there. “I wanted to believe that this was that magical save,” she said.Such doctors face “a dilemma,” Dr. Karlawish said, “a moment when there’s no decision that resolves all the uncertainties and settles the ethical concerns.”“It puts us in a bad place,” agreed Dr. Karina Bishop, a geriatrician at the University of Nebraska Medical Center. Ethically, she added, “if this drug was available right now, I would not feel able to prescribe it.”Even as individual doctors grapple with advising patients, hospitals and health systems are devising protocols for when Aduhelm becomes more widely available, probably within weeks.At the Mayo Clinic, said Dr. Ronald Petersen, a neurologist who directs the Alzheimer’s Disease Research Center there, “we’re going to stick pretty close to the inclusion and exclusion criteria used in the trial.”That means only patients with mild cognitive impairment or early Alzheimer’s disease would qualify, after an M.R.I. to rule out certain conditions and risks, and a P.E.T. scan or lumbar puncture to confirm the presence of amyloid. The Mayo protocols, like the clinical trials, would exclude people taking blood thinners like Warfarin or Eliquis.“It’s not like you come in and say, ‘I’m a little forgetful,’ and we say, ‘Here’s this drug,’” said Dr. Petersen. But not every provider, he acknowledged, will employ such safeguards.Dr. Eric Widera, a geriatrician at the University of California, San Francisco, expressed a similar concern: “If doctors were extremely cautious and limited this drug to the very specific population included in the study, with very careful monitoring, it would be the first time in medicine that was ever done.”He pointed out another consequence of federal approval: a rift between some doctors and the Alzheimer’s Association, the national advocacy group, which this spring mounted a campaign it called More Time. Intended to demonstrate public support for approval of aducanumab, the effort included newspaper ads and social media posts.Now Dr. Widera, who has worked with a local chapter to train medical students and residents, is seeking an alternate source of information to which to refer patients. He has come to mistrust the Alzheimer’s Association, calling it “a big promoter, almost a marketer, for Biogen,” which, like other pharmaceutical firms, helps underwrite the organization and contributed $275,000 to it last year.The association said in an email that “history has shown us that approvals of the first drug in a new category will invigorate the field, increase investments in new treatments and generate greater innovation.”One major unpredictable factor in Aduhelm’s future: insurance coverage. Medicare could decide to authorize coverage as “reasonable and necessary,” to deny or limit it, or to delay a decision. A spokesman at the Centers for Medicare and Medicaid Services said it was reviewing the F.D.A.’s decision and would have more information soon.Given the drug’s announced price tag, a restrictive Medicare policy could put it beyond reach for most older Americans.Joan and James Morehouse of North Perry, Ohio, before the diagnosis. “We are on a horrible journey,” Ms. Morehouse said.Amber Ford for The New York TimesEventually, the F.D.A. might also take action against Aduhelm. Its “accelerated approval” process requires Biogen to undertake a new clinical trial; if that shows no benefit, the agency could withdraw approval. But Biogen has until 2030 to report those results; by then, thousands of hopeful patients might already be taking Aduhelm.For now, doctors are wrestling with how to respond.“One of my core principles is respect for patient autonomy, especially for this disease, which degrades a patient’s ability to exercise self-determination,” said Dr. Karlawish. Slightly softening his published opposition to Aduhelm, he said that he now would prescribe it, after extensive discussions with patients, “but I’d be a reluctant prescriber.”Several doctors described gently dissuading patients by noting the uncertainty that the drug would help, the potentially disabling side effects and the many unknowns. “They have been open to waiting and getting more information,” Dr. Bishop said.Ms. Morehouse, for instance, had heard nothing about Aduhelm before the F.D.A. acted. “We are on a horrible journey,” she said of her husband and herself. Perhaps with the new drug, “we could have maybe not a normal life, but a better life.”During their phone call, she listened as Dr. Koncilja noted that the science was exciting but that Aduhelm was no miracle drug. She heard for the first time about brain swelling or bleeding, “and that scared me,” she said. “Would I ever want to put Jim through that?” She was staggered by the price, which she cannot pay.Her excitement has abated. “But Dr. Koncilja didn’t take away all my hope,” she said. “He told me, ‘Let’s see the potential through the summer, and we’ll confer again in the fall.’”