Health Risks Mount When Seniors Are Stranded in the ER

And that happens even more often now than when COVID was rampant

It’s called “boarding” when patients who have come to an emergency room spend hours and hours, lying on a gurney in a hallway, waiting for a bed in the hospital. Studies show that seniors who have been boarded don’t do as well once they’re admitted and run a higher risk of dying. For this article, journalist Judith Graham interviewed ER doctors and others about why boarding is happening much more often now and what patients can do to protect themselves. KFF Health News posted her article on May 6, 2024, and it also ran on CNN. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

   

Every day, the scene plays out in hospitals across America: older men and women lie on gurneys in emergency room corridors, moaning or suffering silently as harried medical staff attend to crises.

Even when physicians determine these patients need to be admitted to the hospital, they often wait for hours—sometimes more than a day—in the ER in pain and discomfort, not getting enough food or water, not moving around, not being helped to the bathroom and not getting the kind of care doctors deem necessary.

“You walk through ER hallways, and they’re lined from end to end with patients on stretchers in various states of distress calling out for help, including a number of older patients,” said Hashem Zikry, MD, an emergency medicine physician at UCLA Health.

Physicians who staff emergency rooms say this problem, known as ER boarding, is as bad as it’s ever been—even worse than during the first years of the COVID-19 pandemic, when hospitals filled with desperately ill patients.

While boarding can happen to all ER patients, adults 65 and older, who account for nearly 20 percent of ER visits, are especially vulnerable during long waits for care. Also, seniors may encounter boarding more often than other patients. The best estimates I could find, published in 2019, before the COVID-19 pandemic, suggest that 10 percent of patients were boarded in ERs before receiving hospital care. About 30 to 50 percent of these patients were older adults.

“It’s a public health crisis,” said Aisha Terry, MD, an associate professor of emergency medicine at George Washington University School of Medicine and Health Sciences and the president of the board of the American College of Emergency Physicians, which sponsored a summit on boarding in September.

Older adults forced to wait in the ER overnight are more likely to die after they’re finally admitted to the hospital.

What’s going on? I spoke to almost a dozen doctors and researchers who described the chaotic situation in ERs. They told me staff shortages in hospitals, which affect the number of beds available, are contributing to the crisis. Also, they explained, hospital administrators are setting aside more beds for patients undergoing lucrative surgeries and other procedures, contributing to bottlenecks in ERs and leaving more patients in limbo.

Then, there’s high demand for hospital services, fueled in part by the aging of the US population, and backlogs in discharging patients because of growing problems securing home health care and nursing home care, according to Arjun Venkatesh, MD, chair of emergency medicine at the Yale School of Medicine.

The impact of long ER waits on seniors who are frail, with multiple medical issues, is especially serious. Confined to stretchers, gurneys, or even hard chairs, often without dependable aid from nurses, they’re at risk of losing strength, forgoing essential medications and experiencing complications such as delirium, according to Saket Saxena, MD, a co-director of the geriatric emergency department at the Cleveland Clinic.

When these patients finally secure a hospital bed, their stays are longer and medical complications more common. And new research finds that the risk of dying in the hospital is significantly higher for older adults when they stay in ERs overnight, as is the risk of adverse events such as falls, infections, bleeding, heart attacks, strokes and bedsores.

Ellen Danto-Nocton, MD, a geriatrician in Milwaukee, was deeply concerned when an 88-year-old relative with “stroke-like symptoms” spent two days in the ER a few years ago. Delirious, immobile and unable to sleep as alarms outside his bed rang nonstop, the older man spiraled downward before he was moved to a hospital room. “He really needed to be in a less chaotic environment,” Danto-Nocton said.

Several weeks ago, Zikry of UCLA Health helped care for a 70-year-old woman who’d fallen and broken her hip while attending a basketball game. “She was in a corner of our ER for about 16 hours in an immense amount of pain that was very difficult to treat adequately,” he said. ERs are designed to handle crises and stabilize patients, not to “take care of patients who we’ve already decided need to be admitted to the hospital,” he said.

Boarding is an issue that needs to be addressed with changes in the health system and in health policies. 

How common is ER boarding and where is it most acute? No one knows, because hospitals aren’t required to report data about boarding publicly. The Centers for Medicare & Medicaid Services retired a measure of boarding in 2021. New national measures of emergency care capacity have been proposed but not yet approved.

“It’s not just the extent of ED boarding that we need to understand. It’s the extent of acute hospital capacity in our communities,” said Venkatesh of Yale, who helped draft the new measures.

In the meantime, some hospital systems are publicizing their plight by highlighting capacity constraints and the need for more hospital beds. Among them is Massachusetts General Hospital in Boston, which announced in January that ER boarding had risen 32 percent from October 2022 to September 2023. At the end of that period, patients admitted to the hospital spent a median of 14 hours in the ER and 26 percent spent more than 24 hours.

Maura Kennedy, MD, Mass General’s chief of geriatric emergency medicine, described an 80-something woman with a respiratory infection who languished in the ER for more than 24 hours after physicians decided she needed inpatient hospital care.

“She wasn’t mobilized, she had nothing to cognitively engage her, she hadn’t eaten and she became increasingly agitated, trying to get off the stretcher and arguing with staff,” Kennedy told me. “After a prolonged hospital stay, she left the hospital more disabled than she was when she came in.”

When I asked ER doctors what older adults could do about these problems, they said boarding is a health system issue that needs health system and policy changes. Still, they had several suggestions.

Be prepared to wait when you come to an ER…. Bring a medication list and your medications, if you can.

—Alexander Janke, MD

“Have another person there with you to advocate on your behalf,” said Jesse Pines, MD, chief of clinical innovation at US Acute Care Solutions, the nation’s largest physician-owned emergency medicine practice. And have that person speak up if they feel you’re getting worse or if staffers are missing problems.

Alexander Janke, MD, a clinical instructor of emergency medicine at the University of Michigan, advises people, “Be prepared to wait when you come to an ER” and “Bring a medication list and your medications, if you can.”

To stay oriented and reduce the possibility of delirium, “make sure you have your hearing aids and eyeglasses with you,” said Michael Malone, MD, medical director of senior services for Advocate Aurora Health, a 20-hospital system in Wisconsin and northern Illinois. “Whenever possible, try to get up and move around.”

Friends or family caregivers who accompany older adults to the ER should ask to be at their bedside, when possible, and “try to make sure they eat, drink, get to the bathroom and take routine medications for underlying medical conditions,” Malone said.

Older adults or caregivers who are helping them should try to bring “things that would engage you cognitively: magazines, books … music, anything that you might focus on in a hallway where there isn’t a TV to entertain you,” Kennedy said.

“Experienced patients often show up with eye masks and ear plugs” to help them rest in ERs with nonstop stimulation, said Zikry of UCLA. “Also, bring something to eat and drink in case you can’t get to the cafeteria or it’s a while before staffers bring these to you.”

Do We Simply Not Care about Older People?

Three out of four killed by COVID were older adults. Where’s the outrage?

Journalist Judith Graham asked herself that question as she contemplated COVID’s devastating impact on older Americans. Why isn’t everybody blown away by what happened and by how little is still being done to protect older people? Looking for answers, she interviewed policy makers, researchers and health care professionals. KFF Health News posted her article on February 9, 2024, and it also ran on CNN. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

The COVID-19 pandemic would be a wake-up call for America, advocates for the elderly predicted: incontrovertible proof that the nation wasn’t doing enough to care for vulnerable older adults.

The death toll was shocking, as were reports of chaos in nursing homes and seniors suffering from isolation, depression, untreated illness and neglect. Around 900,000 older adults have died of COVID-19 to date, accounting for three of every four Americans who have perished in the pandemic.

But decisive actions that advocates had hoped for haven’t materialized. Today, most people—and government officials—appear to accept COVID as a part of ordinary life. Many seniors at high risk aren’t getting antiviral therapies for COVID, and most older adults in nursing homes aren’t getting updated vaccines. Efforts to strengthen care quality in nursing homes and assisted living centers have stalled amid debate over costs and the availability of staff. And only a small percentage of people are masking or taking other precautions in public despite a new wave of COVID, flu and respiratory syncytial virus [RSV]infections hospitalizing and killing seniors.

In the last week of 2023 and the first two weeks of 2024 alone, 4,810 people 65 and older lost their lives to COVID—a group that would fill more than 10 large airliners—according to data provided by the CDC. But the alarm that would attend plane crashes is notably absent. (During the same period, the flu killed an additional 1,201 seniors, and RSV killed 126.)

“It boggles my mind that there isn’t more outrage,” said Alice Bonner, 66, senior adviser for aging at the Institute for Healthcare Improvement. “I’m at the point where I want to say, ‘What the heck? Why aren’t people responding and doing more for older adults?’”

It’s a good question. Do we simply not care?

I put this big-picture question, which rarely gets asked amid debates over budgets and policies, to health care professionals, researchers, and policy makers who are older themselves and have spent many years working in the aging field. Here are some of their responses.

The pandemic made things worse. Prejudice against older adults is nothing new, but “it feels more intense, more hostile” now than previously, said Karl Pillemer, PhD, 69, a professor of psychology and gerontology at Cornell University.

“I think the pandemic helped reinforce images of older people as sick, frail and isolated—as people who aren’t like the rest of us,” he said. “And human nature being what it is, we tend to like people who are similar to us and be less well disposed to ‘the others.’”

“A lot of us felt isolated and threatened during the pandemic. It made us sit there and think, ‘What I really care about is protecting myself, my wife, my brother, my kids and screw everybody else,’” said W. Andrew Achenbaum, PhD, 76, the author of nine books on aging and a professor emeritus at Texas Medical Center in Houston.

In an environment of “us against them,” where everybody wants to blame somebody, Achenbaum continued, “who’s expendable? Older people who aren’t seen as productive, who consume resources believed to be in short supply. It’s really hard to give old people their due when you’re terrified about your own existence.”

Although COVID continues to circulate, disproportionately affecting older adults, “people now think the crisis is over, and we have a deep desire to return to normal,” said Edwin Walker, 67, who leads the Administration on Aging at the Department of Health and Human Services. He spoke as an individual, not a government representative.

The upshot is “we didn’t learn the lessons we should have,” and the ageism that surfaced during the pandemic hasn’t abated, he observed.

Ageism is pervasive. “Everyone loves their own parents. But as a society, we don’t value older adults or the people who care for them,” said Robert Kramer, MDiv, 74, co-founder and strategic adviser at the National Investment Center for Seniors Housing & Care.

Kramer thinks boomers are reaping what they have sown. “We have chased youth and glorified youth. When you spend billions of dollars trying to stay young, look young, act young, you build in an automatic fear and prejudice of the opposite.”

Combine the fear of diminishment, decline and death that can accompany growing older with the trauma and fear that arose during the pandemic, and “I think COVID has pushed us back in whatever progress we were making in addressing the needs of our rapidly aging society. It has further stigmatized aging,” said John Rowe, MD, 79, professor of health policy and aging at Columbia University’s Mailman School of Public Health.

“The message to older adults is, ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line,’” said Anne Montgomery, 65, a health policy expert at the National Committee to Preserve Social Security and Medicare. She believes, however, that Baby Boomers can “rewrite and flip that script if we want to and if we work to change systems that embody the values of a deeply ageist society.”

Integration, not separation, is needed. The best way to overcome stigma is “to get to know the people you are stigmatizing,” said G. Allen Power, MD, 70, a geriatrician and the chair in aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada. “But we separate ourselves from older people so we don’t have to think about our own aging and our own mortality.”

The solution: “We have to find ways to better integrate older adults in the community as opposed to moving them to campuses where they are apart from the rest of us,” Power said. “We need to stop seeing older people only through the lens of what services they might need and think instead of all they have to offer society.”

That point is a core precept of the National Academy of Medicine’s 2022 report, Global Roadmap for Healthy Longevity. Older people are a “natural resource” who “make substantial contributions to their families and communities,” the report’s authors write in introducing their findings.

Those contributions include financial support to families, caregiving assistance, volunteering, and ongoing participation in the workforce, among other things.

“When older people thrive, all people thrive,” the report concludes.

Future generations will get their turn. That’s a message Kramer conveys in classes he teaches at the University of Southern California, Cornell and other institutions. “You have far more at stake in changing the way we approach aging than I do,” he tells his students. “You are far more likely, statistically, to live past 100 than I am. If you don’t change society’s attitudes about aging, you will be condemned to lead the last third of your life in social, economic and cultural irrelevance.”

As for himself and the Baby Boom generation, Kramer thinks it’s “too late” to effect the meaningful changes he hopes the future will bring.

“I suspect things for people in my generation could get a lot worse in the years ahead,” Pillemer said. “People are greatly underestimating what the cost of caring for the older population is going to be over the next 10 to 20 years, and I think that’s going to cause increased conflict.”

Should Older People Take the New Weight Loss Drugs?

Not much is known about their long-term effects on those 65 and over 

The new drugs being used to help people lose weight seem like game changers, but the studies done on them haven’t included enough older adults, which raises lots of questions. In this article, journalist Judith Graham explains what’s making some doctors think twice before prescribing the new medications for their older patients. KFF Health News posted her article on July 25, 2023, and it also ran on the Washington Post. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues.

Corlee Morris has dieted throughout her adult life.

After her weight began climbing in high school, she spent years losing 50 or 100 pounds then gaining it back. Morris, 78, was at her heaviest in her mid-40s, standing 5 feet 10½ inches and weighing 310 pounds. The Pittsburgh resident has had diabetes for more than 40 years.

Managing her weight was a losing battle until Morris’ doctor prescribed a Type 2 diabetes medication, Ozempic, four months ago. It’s one in a new category of medications changing how ordinary people as well as medical experts think about obesity, a condition that affects nearly four in 10 people 60 and older.

The drugs include Ozempic’s sister medication, Wegovy, a weight loss drug with identical ingredients, which the FDA approved in 2021, and Mounjaro, approved as a diabetes treatment in 2022. (Ozempic was approved for diabetes in 2017.) Several other drugs are in development.

The medications reduce feelings of hunger, generate a sensation of fullness and have been shown to help people lose an average of 15 percent or more of their weight.

“It takes your appetite right away. I wasn’t hungry at all and I lost weight like mad,” said Morris, who has shed 40 pounds.

But how these medications will affect older adults in the long run isn’t well understood. (Patients need to remain on the drugs permanently or risk regaining the weight they’ve lost.)

Will they help prevent cardiovascular disease and other chronic illnesses in obese older adults? Will they reduce rates of disability and improve people’s ability to move and manage daily tasks? Will they enhance people’s lives and alleviate symptoms associated with obesity-related chronic illnesses?

Unfortunately, clinical trials of the medications haven’t included significant numbers of people ages 65 and older, leaving gaps in the available data.

Medicare doesn’t cover weight-loss medications. If it did, and everyone who needs them took them, the cost would be in the billions. 

While the drugs appear to be safe—the most common side effects are nausea, diarrhea, vomiting, constipation and stomach pain—“they’ve only been on the market for a few years and caution is still needed,” said Mitchell Lazar, MD, founding director of the Institute for Diabetes, Obesity and Metabolism at the University of Pennsylvania Perelman School of Medicine.

Given these uncertainties, how are experts approaching the use of the new obesity medications in older people? As might be expected, opinions and practices vary. But several themes emerged in nearly two dozen interviews.

The first was frustration with limited access to the drugs. Because Medicare doesn’t cover weight loss medications and they can cost more than $10,000 a year, seniors’ ability to get the new drugs is restricted.

There is an exception: Medicare will cover Ozempic and Mounjaro if an older adult has diabetes, because the insurance program pays for diabetes therapies.

“We need Medicare to cover these drugs,” said Shauna Matilda Assadzandi, MD, a geriatrician at the University of Pittsburgh who cares for Morris. Recently, she said, she tried to persuade a Medicare Advantage plan representative to authorize Wegovy for a patient with high blood pressure and cholesterol who was gaining weight rapidly.

“I’m just waiting for this patient’s blood sugar to rise to a level where diabetes can be diagnosed. Wouldn’t it make sense to intervene now?” she remembered saying. 

The representative’s answer: “No. We have to follow the rules.”

Seeking to change that, a bipartisan group of lawmakers has reintroduced the Treat and Reduce Obesity Act, which would require Medicare to cover weight loss drugs. But the proposal, which had been considered previously, has languished amid concerns over enormous potential costs for Medicare.

If all beneficiaries with an obesity diagnosis took brand-name semaglutide drugs (the new class of medications), annual costs would top $13.5 billion, according to a recent analysis in the New England Journal of Medicine. If all older obese adults on Medicare—a significantly larger population—took them, the cost would exceed the total spent on Medicare’s Part D drug program, which was $145 billion in 2019.

The new drugs are generally recommended for people with a BMI (body mass index) that’s over 30—or over 26 if they have an obesity-related condition like diabetes. 

Laurie Rich, 63, of Canton, MA, was caught off guard by Medicare’s policies, which have applied to her since she qualified for Social Security Disability Insurance in December. Before that, Rich took Wegovy and another weight loss medication—both covered by private insurance—and she’d lost nearly 42 pounds. Now, Rich can’t get Wegovy and she’s regained 14 pounds.

“I haven’t changed my eating. The only thing that’s different is that some signal in my brain is telling me I’m hungry all the time,” Rich told me. “I feel horrible.” She knows that if she gains more weight, her care will cost much more.

While acknowledging difficult policy decisions that lie ahead, experts voiced considerable agreement on which older adults should take these drugs.

Generally, the medications are recommended for people with a body mass index over 30 (the World Health Organization’s definition of obesity) and those with a BMI of 27 or above and at least one obesity-related condition, such as diabetes, high blood pressure or high cholesterol. There are no guidelines for their use in people 65 and older. (BMI is calculated based on a person’s weight and height.)

But those recommendations are problematic because BMI can under- or overestimate older adults’ body fat, the most problematic feature of obesity, noted Rodolfo Galindo, MD, director of the Comprehensive Diabetes Center at the University of Miami Health System.

Dennis Kerrigan, PhD, director of weight management at Henry Ford Health in Michigan, a system with five hospitals, suggests physicians also examine waist circumference in older patients because abdominal fat puts them at higher risk than fat carried in the hips or buttocks. (For men, a waist over 40 inches is of concern; for women, 35 is the threshold.)

Fatima Stanford, MD, an obesity medicine scientist at Massachusetts General Hospital, said the new drugs are “best suited for older patients who have clinical evidence of obesity,” such as elevated cholesterol or blood sugar, and people with serious obesity-related conditions, such as osteoarthritis or heart disease.

Since going on Mounjaro three months ago, Muriel Branch, 73, of Perryville, AR, has lost 40 pounds and stopped taking three medications as her health has improved. “I feel real good about myself,” she told me.

While shedding pounds, older adults need to exercise, to avoid losing too much muscle mass.

When adults with obesity lose weight, their risk of dying is reduced by up to 15 percent, according to Dinesh Edem, MD, Branch’s doctor and the director of the medical weight management program at the University of Arkansas for Medical Sciences.

Still, weight loss alone should not be recommended to older adults, because it entails the loss of muscle mass as well as fat, experts agree. And with aging, the shrinkage of muscle mass that starts earlier in life accelerates, contributing to falls, weakness, the loss of functioning and the onset of frailty.

Between ages 60 and 70, about 12 percent of muscle mass falls away, researchers estimate; after 80, it reaches 30 percent. 

To preserve muscle mass, seniors losing weight should be prescribed physical activity—both aerobic exercise and strength training, experts agree.

Also, as older adults taking weight loss drugs eat less, “it’s critically important that their diet includes adequate protein and calcium to preserve bone and muscle mass,” said Anne Newman, MD, director of the Center for Aging and Population Health at the University of Pittsburgh.

Ongoing monitoring of older adults having gastrointestinal side effects is needed to ensure they’re getting enough food and water, said Jamy Ard, MD, co-director of Wake Forest Baptist Health Weight Management Center.

Generally, the goal for older adults should be to lose one to two pounds a week, with attention to diet and exercise accompanying medication management.

“My concern is, once we put patients on these obesity drugs, are we supporting lifestyle changes that will maintain their health? Medication alone won’t be sufficient; we will still need to address behaviors,” said Sukhpreet Singh, MD, system medical director at Henry Ford’s weight management program.

 

In Later Life, Is a Little Excess Weight Such a Bad Thing?

Experts have been debating that for years

As new weight-loss drugs with a high degree of success become available, journalist Judith Graham considers whether older people really need to shed some of the pounds they’ve gained as they’ve aged. Some experts suggest that being slightly overweight may actually be good for a person’s health in later life. Graham’s article was posted on the KFF Health News website on July 17, 2023. It also ran on CNN. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

Millions of people enter later life carrying an extra 10 to 15 pounds, weight they’ve gained after having children, developing joint problems, becoming less active or making meals the center of their social lives.

Should they lose this modest extra weight to optimize their health? This question has come to the fore with a new category of diabetes and weight loss drugs giving people hope they can shed excess pounds.

For years, experts have debated what to advise older adults in this situation. On one hand, weight gain is associated with the accumulation of fat. And that can have serious adverse health consequences, contributing to heart disease, diabetes, arthritis and a host of other medical conditions.

On the other hand, numerous studies suggest that carrying some extra weight can sometimes be protective in later life. For people who fall, fat can serve as padding, guarding against fractures. And for people who become seriously ill with conditions such as cancer or advanced kidney disease, that padding can be a source of energy, helping them tolerate demanding therapies.

Of course, it depends on how heavy someone is to begin with. People who are already obese (with a body mass index of 30 or over) and who put on extra pounds are at greater risk than those who weigh less. And rapid weight gain in later life is always a cause for concern.

Making sense of scientific evidence and expert opinion surrounding weight issues in older adults isn’t easy. Here’s what I learned from reviewing dozens of studies and talking with nearly two dozen obesity physicians and researchers.

Our bodies change with age. As we grow older, our body composition changes. We lose muscle mass—a process that starts in our 30s and accelerates in our 60s and beyond—and gain fat. This is true even when our weight remains constant.

Also, less fat accumulates under the skin while more is distributed within the middle of the body. This abdominal fat is associated with inflammation and insulin resistance and a higher risk of cardiovascular disease, diabetes and stroke, among other medical conditions.

“The distribution of fat plays a major role in determining how deleterious added weight in the form of fat is,” said Mitchell Lazar, MD, director of the Institute for Diabetes, Obesity and Metabolism at the University of Pennsylvania’s Perelman School of Medicine. “It’s visceral [abdominal] fat [around the waist], rather than peripheral fat [in the hips and buttocks] that we’re really concerned about.”

Activity levels diminish with age. Also, with advancing age, people tend to become less active. When older adults maintain the same eating habits (energy intake) while cutting back on activity (energy expenditure), they’re going to gain weight.

According to the Centers for Disease Control and Prevention, 27 percent of 65- to 74-year-olds are physically inactive outside of work; that rises to 35 percent for people 75 or older. For older adults, the health agency recommends at least 150 minutes a week of moderately intense activity, such as brisk walking, as well as muscle-strengthening activities such as lifting weights at least twice weekly. Only 27 to 44 percent of older adults meet these guidelines, according to various surveys.

Concerns about muscle mass. Experts are more concerned about a lack of activity in older adults who are overweight or mildly obese (a body mass index in the low 30s) than about weight loss. With minimal or no activity, muscle mass deteriorates and strength decreases, which “raises the risk of developing a disability or a functional impairment” that can interfere with independence, said John Batsis, MD, an obesity researcher and associate professor of medicine at the University of North Carolina School of Medicine in Chapel Hill.

Weight loss contributes to inadequate muscle mass insofar as muscle is lost along with fat. For every pound shed, 25 percent comes from muscle and 75 percent from fat, on average.

Since older adults have less muscle to begin with, “if they want to lose weight, they need to be willing at the same time to increase physical activity.” said Anne Newman, MD, director of the Center for Aging and Population Health at the University of Pittsburgh School of Public Health.

Ideal body weight may be higher. Epidemiologic research suggests that the ideal body mass index (BMI) might be higher for older adults than younger adults. (BMI is a measure of a person’s weight, in kilograms or pounds, divided by the square of their height, in meters or feet.)

One large, well-regarded study found that older adults at either end of the BMI spectrum—those with low BMIs (under 22) and those with high BMIs (over 33)—were at greater risk of dying earlier than those with BMIs in the middle range (22 to 32.9).

Older adults with the lowest risk of earlier deaths had BMIs of 27 to 27.9. According to World Health Organization standards, this falls in the “overweight” range (25 to 29.9) and above the “healthy weight” BMI range (18.5 to 24.9). Also, many older adults whom the study found to be at highest mortality risk—those with BMIs under 22—would be classified as having “healthy weight” by the WHO.

The study’s conclusion: “The WHO healthy weight range may not be suitable for older adults.” Instead, being overweight may be beneficial for older adults, while being notably thin can be problematic, contributing to the potential for frailty.

Indeed, an optimal BMI for older adults may be in the range of 24 to 29, Carl Lavie, MD, a well-known obesity researcher, suggested in a separate study reviewing the evidence surrounding obesity in older adults. Lavie is the medical director of cardiac rehabilitation and prevention at Ochsner Health, a large health care system based in New Orleans, and author of The Obesity Paradox, a book that explores weight issues in older adults.

Expert recommendations. Obesity physicians and researchers offered several important recommendations during our conversations:

  • Maintaining fitness and muscle mass is more important than losing weight for overweight older adults (those with BMIs of 25 to 29.9). “Is losing a few extra pounds going to dramatically improve their health? I don’t think the evidence shows that,” Lavie said.
  • Unintentional weight loss is associated with several serious illnesses and is a danger signal that should always be attended to. “See your doctor if you’re losing weight without trying to,” said Newman of the University of Pittsburgh. She’s the coauthor of a new paper finding that “unanticipated weight loss even among adults with obesity is associated with increased mortality” risk.
  • Ensuring diet quality is essential. “Older adults are at risk for vitamin deficiencies and other nutritional deficits, and if you’re not consuming enough protein, that’s a problem,” said Batsis of the University of North Carolina. “I tell all my older patients to take a multivitamin,” said Dinesh Edem, MD, director of the Medical Weight Management program at the University of Arkansas for Medical Sciences.
  • Losing weight is more important for older adults who have a lot of fat around their middle (an apple shape) than it is for people who are heavier lower down (a pear shape). “For patients with a high waist circumference, we’re more aggressive in reducing calories or increasing exercise,” said Dennis Kerrigan, PhD, director of weight management at Henry Ford Health in Michigan.
  • Maintaining weight stability is a good goal for healthy older adults who are carrying extra weight but who don’t have moderate or severe obesity (BMIs of 35 or higher). By definition, “healthy” means people who don’t have serious metabolic issues (overly high cholesterol, blood sugar, blood pressure, and triglycerides), obesity-related disabilities (problems with mobility are common), or serious obesity-related illnesses such as diabetes or heart disease. “No great gains and no great losses—that’s what I recommend,” said Katie Dodd, MS, a geriatric dietitian who writes a blog about nutrition.

 

What to Expect as You Age

A doctor’s frank guide to natural changes in bodies and minds 

As you grow older, it’s sometimes hard to figure out whether a physical or mental change needs medical attention or whether it’s just normal at your age. For this article, journalist Judith Graham interviewed a geriatrician who has written a comprehensive guide to help readers make such distinctions and to suggest ways to adapt. KFF Health News posted Graham’s story on October 20, 2023, and it also ran in the Washington Post. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues.   

How many of us have wanted a reliable, evidence-based guide to aging that explains how our bodies and minds change as we grow older and how to adapt to those differences?

Creating a work of this kind is challenging. For one thing, aging gradually alters people over decades, a long period shaped by individuals’ economic and social circumstances, their behaviors, their neighborhoods and other factors. Also, while people experience common physiological issues in later life, they don’t follow a well-charted, developmentally predetermined path.

“Predictable changes occur, but not necessarily at the same time or in the same sequence,” said Rosanne Leipzig, MD, vice chair for education at the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York. “There’s no more heterogeneous a group than older people.”

I called Leipzig, 72, who works full time teaching medical residents and fellows and seeing patients, after reading her new 400-plus-page, information-packed book, Honest Aging: An Insider’s Guide to the Second Half of Life. It’s the most comprehensive examination of what to expect in later life I’ve come across in a dozen years covering aging.

Leipzig told me she had two goals in writing this guide, “to overcome all the negatives that are out there about growing older” and “to help people understand that there are lots of things that you can do to adapt to your new normal as you age and have an enjoyable, engaged, meaningful life.”

The medical disorders older people have are different than those doctors see in younger people.

Why call it “honest aging”? “Because so much of what’s out there is dishonest, claiming to teach people how to age backwards,” Leipzig said. “I think it’s time we say, ‘This is it; this is who we are,’ and admit how lucky we are to have all these years of extra time.”

The doctor was referring to extraordinary gains in life expectancy achieved in the modern era. Because of medical advances, people over age 60 live far longer than people at the dawn of the 20th century. Still, most of us lack a good understanding of what happens to our bodies during this extended period after middle age.

Several months ago, a medical student asked Leipzig whether references to age should be left out of a patient’s written medical history, as references to race have been eliminated. “I told her no; with medicine, age is always relevant,” Leipzig said. “It gives you a sense of where people are in their life, what they’ve lived through, and the disorders they might have, which are different than those in younger people.”

What questions do older adults tend to ask most often? Leipzig rattled off a list: What can I do about this potbelly? How can I improve my sleep? I’m having trouble remembering names; is this dementia? Do I really need that colonoscopy or mammogram? What should I do to get back into shape? Do I really need to stop driving?

Underlying these is a poor understanding of what’s normal in later life and the physical and mental alterations aging brings.

Can the stages of aging be broken down, roughly, by decade? No, said Leipzig, noting that people in their 60s and 70s vary significantly in health and functioning. Typically, predictable changes associated with aging “start to happen much more between the ages of 75 and 85,” she told me. Here are a few of the age-related issues she highlights in her book:

  • Older adults often present with different symptoms when they become ill. For instance, a senior having a heart attack may be short of breath or confused, rather than report chest pain. Similarly, an older person with pneumonia may fall or have little appetite instead of having a fever and cough.
  • Older adults react differently to medications. Because of changes in body composition and liver, kidney and gut function, older adults are more sensitive to medications than younger people and often need lower doses. This includes medications that someone may have taken for years. It also applies to alcohol.
  • Older adults have reduced energy reserves. With advancing age, hearts become less efficient, lungs transfer less oxygen to the blood, more protein is needed for muscle synthesis, and muscle mass and strength decrease. The result: older people generate less energy even as they need more energy to perform everyday tasks.
  • Hunger and thirst decline. People’s senses of taste and smell diminish, lessening food’s appeal. Loss of appetite becomes more common, and seniors tend to feel full after eating less food. The risk of dehydration increases.
  • Cognition slows. Older adults process information more slowly and work harder to learn new information. Multitasking becomes more difficult, and reaction times grow slower. Problems finding words, especially nouns, are typical. Cognitive changes related to medications and illness are more frequent.
  • The musculoskeletal system is less flexible. Spines shorten as the discs that separate the vertebrae become harder and more compressed; older adults typically lose one to three inches in height as this happens. Balance is compromised because of changes in the inner ear, the brain and the vestibular system (a complex system that regulates balance and a person’s sense of orientation in space). Muscles weaken in the legs, hips and buttocks, and range of motion in joints contracts. Tendons and ligaments aren’t as strong, and falls and fractures are more frequent as bones become more brittle.
  • Eyesight and hearing change. Older adults need much more light to read than younger people. It’s harder for them to see the outlines of objects or distinguish between similar colors, as color and contrast perception diminish. With changes to the cornea, lens and fluid within the eye, it takes longer to adjust to sunlight as well as darkness.
  • Because of accumulated damage to hair cells in the inner ear, it’s harder to hear, especially at high frequencies. It’s also harder to understand speech that’s rapid and loaded with information or that occurs in noisy environments.
  • Sleep becomes fragmented. It takes longer for older adults to fall asleep, and they sleep more lightly, awakening more in the night.

This is by no means a complete list of physiological changes that occur as we grow older. And it leaves out the many ways people can adapt to their new normal, something Leipzig spends a great deal of time discussing.

A partial list of what she suggests, organized roughly by the topics above: don’t ignore sudden changes in functioning; seek medical attention. At every doctor’s visit, ask why you’re taking medications, whether doses are appropriate and whether medications can be stopped. Be physically active. Make sure you eat enough protein. Drink liquids even when you aren’t thirsty. Cut down on multitasking and work at your own pace. Do balance and resistance exercises. Have your eyes checked every year. Get hearing aids. Don’t exercise, drink alcohol or eat a heavy meal within two to three hours of bedtime.

“Never say never,” Leipzig said. “There is almost always something that can be done to improve your situation as you grow older, if you’re willing to do it.”

 

Special Programs Teach Much-Needed Skills to Dementia Caregivers

But those programs are neither widely available nor widely known

More than 80 percent of the care provided for individuals who have dementia comes from family and friends. Most of these caregivers have no training and get little help. In this article for KFF Health News, journalist Judith Graham describes the programs that are available now, locally or online, what they do and why they’re so important. KFF Health News posted her piece on February 27, 2023. It also ran on CBS News.  

There’s no cure—yet—for Alzheimer’s disease. But dozens of programs developed in the past 20 years can improve the lives of both people living with dementia and their caregivers. 

Unlike support groups, these programs teach caregivers concrete skills, such as how to cope with stress, make home environments safe, communicate effectively with someone who’s confused or solve problems that arise as this devastating illness progresses.

Some of these programs, known as “comprehensive dementia care,” also employ coaches or navigators, who help assess patients’ and caregivers’ needs, develop individualized care plans, connect families to community resources, coordinate medical and social services and offer ongoing practical and emotional support.

Unfortunately, despite a significant body of research documenting their effectiveness, these programs aren’t broadly available or widely known. Only a small fraction of families coping with dementia participate, even in the face of pervasive unmet care needs. And funding is scant, compared with the amount of money that has flooded into the decades-long, headline-grabbing quest for pharmaceutical therapies.

“It’s distressing that the public conversation about dementia is dominated by drug development, as if all that’s needed were a magic pill,” said Laura Gitlin, PhD, a prominent dementia researcher and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia.

“We need a much more comprehensive approach that recognizes the prolonged, degenerative nature of this illness and the fact that dementia is a family affair,” she said.

In the United States, more than 11 million unpaid and largely untrained family members and friends provide more than 80 percent of care to people with dementia, supplying assistance worth $272 billion in 2021, according to the Alzheimer’s Association. (This excludes patients living in nursing homes and other institutions.) Research shows these “informal” caretakers devote longer hours to tending to those with dementia and have a higher burden of psychological and physical distress than other caregivers.

These programs improve the quality of life for people with dementia while lessening the stress on their caregivers. 

Despite those contributions, Medicare expected to spend $146 billion on people with Alzheimer’s disease or other types of dementia in 2022, while Medicaid, which pays for nursing home care for people with low incomes or disabilities, expected to spend about $61 billion.

One might think such enormous spending ensures high-quality medical care and adequate support services, but quite the opposite is true. Medical care for people with Alzheimer’s and other types of dementia in the United States—an estimated 7.2 million individuals, most of them seniors—is widely acknowledged to be fragmented, incomplete, poorly coordinated and insensitive to the essential role that family caregivers play. And support services are few and far between.

“What we offer people, for the most part, is entirely inadequate,” said Carolyn Clevenger, NP, associate dean for transformative clinical practice at Emory University’s Nell Hodgson Woodruff School of Nursing.

Clevenger helped create the Integrated Memory Care program at Emory, a primary care practice run by nurse practitioners with expertise in dementia. Like other comprehensive care programs, they pay considerable attention to caregivers’ as well as patients’ needs. “We spent a great deal of time answering all kinds of questions and coaching,” she told me. This year, Clevenger said, she hopes three additional sites will open across the country.

Expansion is a goal shared by other comprehensive care programs at UCLA (the Alzheimer’s and Dementia Care Program, now available at 18 sites), Eskenazi Health in Indianapolis, the University of California-San Francisco (Care Ecosystem, 26 sites), Johns Hopkins University (Maximizing Independence at Home) and the Benjamin Rose Institute on Aging in Cleveland (BRI Care Consultation, 35 sites).

Over the past decade, a growing body of research has shown these programs improve the quality of life for people with dementia, alleviate troublesome symptoms, help avoid unnecessary emergency room visits or hospitalizations and delay nursing home placement, while also reducing depression symptoms, physical and emotional strain and overall stress for caregivers.

Comprehensive dementia care programs could save billions for Medicare and Medicaid.

In an important development in 2021, an expert panel organized by the National Academies of Sciences, Engineering, and Medicine said there was sufficient evidence of benefit to recommend that comprehensive dementia care programs be broadly implemented.

Now, leaders of these programs and dementia advocates are lobbying Medicare to launch a pilot project to test a new model to pay for comprehensive dementia care. They have been meeting with staff at the Center for Medicare and Medicaid Innovation, and “CMMI has expressed a considerable amount of interest in this,” according to David Reuben, MD, chief of geriatric medicine at UCLA and a leader of its dementia care program.

“I’m very optimistic that something will happen” later this year, said Malaz Boustani, MD, a professor at Indiana University, who helped develop Eskenazi Health’s Aging Brain Care program and who has been part of the discussions with the Centers for Medicare & Medicaid Services.

The Alzheimer’s Association also advocates for a pilot project of this kind, which could be adopted “Medicare-wide” if it’s shown to [be] beneficial and cost-effective, said Matthew Baumgart, the association’s vice president of health policy. Under a model proposed by the association, comprehensive dementia care programs would receive between $175 and $225 per month for each patient in addition to what Medicare pays for other types of care.

A study commissioned by the association estimates that implementing a comprehensive care dementia model could save Medicare and Medicaid $21 billion over 10 years, largely by reducing patients’ use of intensive health care services.

Later this year, caregivers will be able to search an online directory for programs in their area.  

Several challenges await, even if Medicare experiments with ways to support comprehensive dementia care. There aren’t enough health care professionals trained in dementia care, especially in rural areas and low-income urban areas. Moving programs into clinical settings, including primary care practices and medical clinics, may be challenging, given the extent of dementia patients’ needs. And training needs for program staff members are significant.

Even if families receive some assistance, they may not be able to afford necessary help in the home or other services, such as adult day care. And many families coping with dementia may remain at a loss to find help.

To address that, the Benjamin Rose Institute on Aging later this year plans to publish an online consumer directory of evidence-based programs for dementia caregivers. For the first time, people will be able to search, by ZIP code, for assistance available near them. “We want to get the word out to caregivers that help is available,” said David Bass, a senior vice president at the Benjamin Rose Institute, who’s leading that effort.

Generally, programs for dementia caregivers are financed by grants or government funding and free to families. Often, they’re available through Area Agencies on Aging—organizations that families should consult if they’re looking for help. Some examples:

  • Savvy Caregiver, delivered over six weeks to small groups in person or over Zoom. Each week, a group leader (often a social worker) gives a mini-lecture, discusses useful strategies and guides group members through exercises designed to help them manage issues associated with dementia. Now offered in 20 states, Savvy Caregiver recently introduced an online, seven-session version of the program that caregivers can follow on their schedule.
  • REACH Community, a streamlined version of a program recommended in the 2021 National Academy of Sciences report. In four, hour-long sessions in person or over the phone, a coach teaches caregivers about dementia, problem-solving strategies, and managing symptoms, moods, stress and safety. A similar program, REACH VA, is available across the country through the Department of Veterans Affairs.
  • Tailored Activity Program. In up to eight, in-home sessions over four months, an occupational therapist assesses the interests, functional abilities and home environment of a person living with dementia. Activities that can keep the individual meaningfully engaged are suggested, along with advice on how to carry them out and tips for simplifying the activities as dementia progresses. The program is being rolled out across health care settings in Australia and is being reviewed as a possible component of geriatric, home-based care by the VA, Gitlin said.

 

More Older Americans Likely to Die of Heart Disease in the Future

Blacks and Hispanics will be especially vulnerable

Deaths from heart disease were dropping nicely for a while, but after 2010, the number of fatalities began to rise again. In this piece written for KFF Health News, Judith Graham delves into the reasons for this change, what it portends for the future and what COVID revealed about the groups and parts of the country most at risk. KFF Health News posted her piece on its website on May 30, 2023. It also ran on the Washington Post.

Cardiovascular disease—the No. 1 cause of death among people 65 and older—is poised to become more prevalent in the years ahead, disproportionately affecting Black and Hispanic communities and exacting an enormous toll on the health and quality of life of older Americans.

The estimates are sobering: by 2060, the prevalence of ischemic heart disease (a condition caused by blocked arteries and also known as coronary artery disease) is projected to rise 31 percent compared with 2025; heart failure will increase 33 percent; heart attacks will grow by 30 percent; and strokes will increase by 34 percent, according to a team of researchers from Harvard and other institutions. The greatest increase will come between 2025 and 2030, they predicted.

The dramatic expansion of the US aging population (cardiovascular disease is far more common in older adults than in younger people) and rising numbers of people with conditions that put them at risk of heart disease and stroke—high blood pressure, diabetes, and obesity foremost among them—are expected to contribute to this alarming scenario.

Because the risk factors are more common among Black and Hispanic populations, cardiovascular illness and death will become even more common for these groups, the researchers predicted. (Hispanic people can be of any race or combination of races.)

“Disparities in the burden of cardiovascular disease are only going to be exacerbated” unless targeted efforts are made to strengthen health education, expand prevention and improve access to effective therapies, wrote the authors of an accompanying editorial, from Stony Brook University in New York and Baylor University Medical Center in Texas.

Between 2011 and 2019, deaths from cardiovascular disease increased by 13 percent.

“Whatever focus we’ve had before on managing [cardiovascular] disease risk in Black and Hispanic Americans, we need to redouble our efforts,” said Clyde Yancy, MD, chief of cardiology and vice dean for diversity and inclusion at Northwestern University’s Feinberg School of Medicine in Chicago, who was not involved with the research.

Of course, medical advances, public health policies and other developments could alter the outlook for cardiovascular disease over the next several decades.

More than 80 percent of cardiovascular deaths occur among adults 65 or older. For about a dozen years, the total number of cardiovascular deaths in this age group has steadily ticked upward, as the ranks of older adults have expanded and previous progress in curbing fatalities from heart disease and strokes has been undermined by Americans’ expanding waistlines, poor diets and physical inactivity.

Among people 65 and older, cardiovascular deaths plunged 22 percent between 1999 and 2010, according to data from the National Heart, Lung, and Blood Institute—a testament to new medical and surgical therapies and treatments and a sharp decline in smoking, among other public health initiatives. Then between 2011 and 2019, deaths climbed 13 percent.

The COVID-19 pandemic has also added to the death toll, with coronavirus infections causing serious complications such as blood clots and millions of seniors avoiding seeking medical care out of fear of becoming infected. Most affected have been low-income individuals and older, non-Hispanic Black and Hispanic people, who have died from the virus at disproportionately higher rates than non-Hispanic white people.

African Americans, facing the stress of racial discrimination, are more likely to have high blood pressure and other conditions that increase the risk of cardiovascular disease. 

“The pandemic laid bare ongoing health inequities,” and that has fueled a new wave of research into disparities across various medical conditions and their causes, said Nakela Cook, MD, a cardiologist and executive director of the Patient-Centered Outcomes Research Institute, an independent organization authorized by Congress.

One of the most detailed examinations yet, published in JAMA Cardiology in March, examined mortality rates in Hispanic, non-Hispanic Black, and non-Hispanic white populations from 1990 to 2019 in all 50 states and the District of Columbia. It showed that Black men remain at the highest risk of dying from cardiovascular disease, especially in Southern states along the Mississippi River and in the northern Midwest. (The age-adjusted mortality rate from cardiovascular disease for Black men in 2019 was 245 per 100,000, compared with 191 per 100,000 for white men and 135 per 100,000 for Hispanic men. Results for women within each demographic were lower.)

Progress stemming deaths from cardiovascular disease in Black men slowed considerably between 2010 and 2019. Across the country, cardiovascular deaths for that group dropped 13 percent, far less than the 28 percent decline from 2000 to 2010 and 19 percent decline from 1990 to 2000. In the regions where Black men were most at risk, the picture was even worse: in Mississippi, for instance, deaths of Black men fell only 1 percent  from 2010 to 2019, while in Michigan they dropped 4 percent. In the District of Columbia, they actually rose by nearly 5 percent.

While individual lifestyles are partly responsible for the unequal burden of cardiovascular disease, the American Heart Association’s 2017 scientific statement on the cardiovascular health of African Americans notes that “perceived racial discrimination” and related stress are associated with hypertension, obesity, persistent inflammation and other clinical processes that raise the risk of cardiovascular disease.

Though Black people are deeply affected, so are other racial and ethnic minorities who experience adversity in their day-to-day lives, several experts noted. However, recent studies of cardiovascular deaths don’t feature some of these groups, including Asian Americans and Native Americans.

We really need to be going into vulnerable communities and reaching people where they’re at to increase their knowledge of risk factors and how to reduce them.

—Natalie Bello, MD

What are the implications for the future? Noting significant variations in cardiovascular health outcomes by geographic location, Alain Bertoni, MD, an internist and professor of epidemiology and prevention at Wake Forest University School of Medicine, said, “We may need different solutions in different parts of the country.”

Gregory Roth, a coauthor of the JAMA Cardiology paper and an associate professor of cardiology at the University of Washington School of Medicine, called for a renewed effort to educate people in at-risk communities about “modifiable risk factors”—high blood pressure, high cholesterol, obesity, diabetes, smoking, inadequate physical activity, unhealthy diet and insufficient sleep. The American Heart Association has suggestions on its website for promoting cardiovascular health in each of these areas.

Michelle Albert, MD, a cardiologist and the current president of the American Heart Association, said more attention needs to be paid in medical education to “social determinants of health”—including income, education, housing, neighborhood environments and community characteristics—so the health care workforce is better prepared to address unmet health needs in vulnerable populations.

Natalie Bello, MD, a cardiologist and the director of hypertension research at the Smidt Heart Institute at Cedars-Sinai Medical Center in Los Angeles, said, “We really need to be going into vulnerable communities and reaching people where they’re at to increase their knowledge of risk factors and how to reduce them.” This could mean deploying community health workers more broadly or expanding innovative programs like ones that bring pharmacists into Black-owned barberships to educate Black men about high blood pressure, she suggested.

“Now, more than ever, we have the medical therapies and technologies in place to treat cardiovascular conditions,” said Rishi Wadhera, MD, a cardiologist and section head of health policy and equity research at the Smith Center for Outcomes Research in Cardiology at Beth Israel Deaconess Medical Center in Boston. What’s needed, he said, are more vigorous efforts to ensure all older patients, including those from disadvantaged communities, are connected with primary care physicians and receive appropriate screening and treatment for cardiovascular risk factors, and high-quality, evidence-based care in the event of heart failure, a heart attack or a stroke.

What to Do When Your Older Parents Resist Help or Advice

To find a solution, you may need a new set of skills

A kind of role reversal can happen when your parents take risks or jeopardize their health, and you worry and insist they do what you think they should do. That often gets you nowhere. In this article, Judith Graham, a columnist for KFF Health News, consults experts for tips on how to handle such situations. Her piece was posted on the KFF Health News website on May 19, 2023. It also ran on CNN. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

It was a regrettable mistake. But Kim Sylvester thought she was doing the right thing at the time.

Her 80-year-old mother, Harriet Burkel, had fallen at her home in Raleigh, NC, fractured her pelvis and gone to a rehabilitation center to recover. It was only days after the death of Burkel’s 82-year-old husband, who’d moved into a memory care facility three years before.

With growing distress, Sylvester had watched her mother, who had emphysema and peripheral artery disease, become increasingly frail and isolated. “I would say, ‘Can I help you?’ And my mother would say, ‘No, I can do this myself. I don’t need anything. I can handle it,’” Sylvester told me.

Now, Sylvester had a chance to get some more information. She let herself into her mother’s home and went through all the paper work she could find. “It was a shambles—completely disorganized, bills everywhere,” she said. “It was clear things were out of control.”

Sylvester sprang into action, terminating her mother’s orders for anti-aging supplements, canceling two car warranty insurance policies (Burkel wasn’t driving at that point), ending a yearlong contract for knee injections with a chiropractor and throwing out donation requests from dozens of organizations. When her mother found out, she was furious.

“I was trying to save my mother, but I became someone she couldn’t trust—the enemy. I really messed up,” Sylvester said.

Dealing with an older parent who stubbornly resists offers of help isn’t easy. But the solution isn’t to make an older person feel like you’re steamrolling them and taking over their affairs. What’s needed instead are respect, empathy and appreciation of the older person’s autonomy.

Before interfering, try asking yourself whether what your loved one is doing really matters to their health or safety.

“It’s hard when you see an older person making poor choices and decisions. But if that person is cognitively intact, you can’t force them to do what you think they should do,” said Anne Sansevero, RN, president of the board of directors of the Aging Life Care Association, a national organization of care managers who work with older adults and their families. “They have a right to make choices for themselves.”

That doesn’t mean adult children concerned about an older parent should step aside or agree to everything the parent proposes. Rather, a different set of skills is needed.

Cheryl Woodson, MD, an author and retired physician based in the Chicago area, learned this firsthand when her mother—whom Woodson described as a “very powerful” woman—developed mild cognitive impairment. She started getting lost while driving and would buy things she didn’t need, then give them away.

Chastising her mother wasn’t going to work. “You can’t push people like my mother or try to take control,” Woodson told me. “You don’t tell them, ‘No, you’re wrong,’ because they changed your diapers and they’ll always be your mom.”

Instead, Woodson learned to appeal to her mother’s pride in being the family matriarch. “Whenever she got upset, I’d ask her, ‘Mother, what year was it that Aunt Terri got married?’ or ‘Mother, I don’t remember how to make macaroni. How much cheese do you put in?’ And she’d forget what she was worked up about and we’d just go on from there.”

Woodson, author of To Survive Caregiving: A Daughter’s Experience, a Doctor’s Advice, also learned to apply a “does it really matter to safety or health?” standard to her mother’s behavior. It helped Woodson let go of her sometimes unreasonable expectations. One example she related: “My mother used to shake hot sauce on pancakes. It would drive my brother nuts, but she was eating, and that was good.”

“You don’t want to rub their nose into their incapacity,” said Woodson, whose mother died in 2003.

Try to offer help in a way that’s face-saving for the other person.

Barry Jacobs, PsyD, a clinical psychologist and family therapist, sounded similar themes in describing a psychiatrist in his late 70s who didn’t like to bend to authority. After his wife died, the older man stopped shaving and changing his clothes regularly. Though he had diabetes, he didn’t want to see a physician and instead prescribed medicine for himself. Even after several strokes compromised his vision, he insisted on driving.

Jacobs’ take: “You don’t want to go toe-to-toe with someone like this, because you will lose. They’re almost daring you to tell them what to do, so they can show you they won’t follow your advice.”

What’s the alternative? “I would employ empathy and appeal to this person’s pride as a basis for handling adversity or change,” Jacobs said. “I might say something along the lines of, ‘I know you don’t want to stop driving and that this will be very painful for you. But I know you have faced difficult, painful changes before, and you’ll find your way through this.’”

“You’re appealing to their ideal self rather than treating them as if they don’t have the right to make their own decisions anymore,” he explained. In the older psychiatrist’s case, conflict with his four children was constant, but he eventually stopped driving.

Another strategy that can be useful: “Show up, but do it in a way that’s face-saving,” Jacobs said. Instead of asking your father if you can check in on him, “go to his house and say, ‘The kids really wanted to see you. I hope you don’t mind.’ Or, ‘We made too much food. I hope you don’t mind my bringing it over.’ Or, ‘I wanted to stop by. I hope you can give me some advice about this issue that’s on my mind.’”

This psychiatrist didn’t have any cognitive problems, though he wasn’t as sharp as he used to be. But encroaching cognitive impairment often colors difficult family interactions.

If you think this might be a factor with your parent, instead of trying to persuade them to accept more help at home, try to get them medically evaluated, said Leslie Kernisan, MD, author of When Your Aging Parent Needs Help: A Geriatrician’s Step-by-Step Guide to Memory Loss, Resistance, Safety Worries, & More. 

You always want to give the older adult a chance to weigh in and talk about . . . their feelings and concerns.

—Leslie Kernisan, MD 

“Decreased brain function can affect an older adult’s insight and judgment and ability to understand the risks of certain actions or situations, while also making people suspicious and defensive,” she noted.

This doesn’t mean you should give up on talking to an older parent with mild cognitive impairment or early-stage dementia, however. “You always want to give the older adult a chance to weigh in and talk about what’s important to them and their feelings and concerns,” Kernisan said.

“If you frame your suggestions as a way of helping your parent achieve a goal they’ve said was important, they tend to be much more receptive to it,” she said.

A turning point for Sylvester and her mother came when the older woman, who developed dementia, went to a nursing home at the end of 2021. Her mother, who at first didn’t realize the move was permanent, was furious, and Sylvester waited two months before visiting. When she finally walked into Burkel’s room, bearing a Valentine’s Day wreath, Burkel hugged her and said, “I’m so glad to see you,” before pulling away. “But I’m so mad at my other daughter.”

Sylvester, who doesn’t have a sister, responded, “I know, Mom. She meant well, but she didn’t handle things properly.” She learned the value of what she calls a therapeutic fiblet from Kernisan, who ran a family caregiver group Sylvester attended between 2019 and 2021.

After that visit, Sylvester saw her mother often, and all was well between the two women up until Burkel’s death. “If something was upsetting my mother, I would just go, ‘Interesting,’ or, ‘That’s a thought.’ You have to give yourself time to remember this is not the person you used to know and create the person you need to be your parent, who’s changed so much.”

 

Many Older Adults Have a Problem with Persistent Fatigue 

It can be linked to chronic illnesses, but sometimes the cause is hard to diagnose

Journalist Judith Graham digs into a problem reported by 55 percent of older patients in one large study. She explores what can cause fatigue and strategies for managing it. KFF Health News posted her article on April 4, 2023, and it also ran in the Washington Post. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

Nothing prepared Linda C. Johnson of Indianapolis for the fatigue that descended on her after a diagnosis of stage 4 lung cancer in early 2020.

Initially, Johnson, now 77, thought she was depressed. She could barely summon the energy to get dressed in the morning. Some days, she couldn’t get out of bed.

But as she began to get her affairs in order, Johnson realized something else was going on. However long she slept the night before, she woke up exhausted. She felt depleted, even if she didn’t do much during the day.

“People would tell me, ‘You know, you’re getting old.’ And that wasn’t helpful at all. Because then you feel there’s nothing you can do mentally or physically to deal with this,” she told me.

Fatigue is a common companion of many illnesses that beset older adults: heart disease, cancer, rheumatoid arthritis, lung disease, kidney disease, and neurological conditions like multiple sclerosis, among others. It’s one of the most common symptoms associated with chronic illness, affecting 40 to 74 percent of older people living with these conditions, according to a 2021 review by researchers at the University of Massachusetts.

This is more than exhaustion after an extremely busy day or a night of poor sleep. It’s a persistent, whole-body feeling of having no energy, even with minimal or no exertion. “I feel like I have a drained battery pretty much all of the time,” wrote a user named Renee in a Facebook group for people with polycythemia vera, a rare blood cancer. “It’s sort of like being a wrung-out dishrag.”

When older adults who develop fatigue become inactive, that can lead to muscle loss and weakness—and worse fatigue. 

Fatigue doesn’t represent “a day when you’re tired; it’s a couple of weeks or a couple of months when you’re tired,” said Kurt Kroenke, MD, a research scientist at the Regenstrief Institute in Indianapolis, which specializes in medical research, and a professor at Indiana University’s School of Medicine.

When he and colleagues queried nearly 3,500 older patients at a large, primary care clinic in Indianapolis about bothersome symptoms, 55 percent listed fatigue—second only to musculoskeletal pain (65 percent) and more than back pain (45 percent) and shortness of breath (41 percent).

Separately, a 2010 study in the Journal of the American Geriatrics Society estimated that 31 percent of people 51 and older reported being fatigued in the past week.

The impact can be profound. Fatigue is the leading reason for restricted activity in people 70 and older, according to a 2001 study by researchers at Yale. Other studies have linked fatigue with impaired mobility, limitations in people’s abilities to perform daily activities, the onset or worsening of disability, and earlier death. 

What often happens is older adults with fatigue stop being active and become deconditioned, which leads to muscle loss and weakness, which heightens fatigue. “It becomes a vicious cycle that contributes to things like depression, which can make you more fatigued,” said Jean Kutner, MD, a professor of medicine and chief medical officer at the University of Colorado Hospital.

To stop that from happening, Johnson came up with a plan after learning her lung cancer had returned. Every morning, she set small goals for herself. One day, she’d get up and wash her face. The next, she’d take a shower. Another day, she’d go to the grocery store. After each activity, she’d rest.

In the three years since her cancer came back, Johnson’s fatigue has been constant. But “I’m functioning better,” she told me, because she’s learned how to pace herself and find things that motivate her, like teaching a virtual class to students training to be teachers and getting exercise under the supervision of a personal trainer.

Many people who struggle with fatigue seem to have no underlying medical condition. 

When should older adults be concerned about fatigue? “If someone has been doing OK but is now feeling fatigued all the time, it’s important to get an evaluation,” said Holly Yang, MD, a physician at Scripps Mercy Hospital in San Diego and incoming board president of the American Academy of Hospice and Palliative Medicine.

“Fatigue is an alarm signal that something is wrong with the body, but it’s rarely one thing. Usually, several things need to be addressed,” said Ardeshir Hashmi, MD, section chief of the Center for Geriatric Medicine at the Cleveland Clinic.

Among the items physicians should check: Are your thyroid levels normal? Are you having trouble with sleep? If you have underlying medical conditions, are they well controlled? Do you have an underlying infection? Are you chronically dehydrated? Do you have anemia (a deficiency of red blood cells or hemoglobin), an electrolyte imbalance, or low levels of testosterone? Are you eating enough protein? Have you been feeling more anxious or depressed recently? And might medications you’re taking be contributing to fatigue?

“The medications and doses may be the same, but your body’s ability to metabolize those medications and clear them from your system may have changed,” Hashmi said, noting that such changes in the body’s metabolic activity are common as people become older.

Many potential contributors to fatigue can be addressed. But much of the time, reasons for fatigue can’t be explained by an underlying medical condition.

For cancer patients, evidence suggests that the best way to manage fatigue is to gradually improve stamina with physical activity.

That happened to Teresa Goodell, 64, a retired nurse who lives just outside Portland, OR. During a December visit to Arizona, she suddenly found herself exhausted and short of breath while on a hike, even though she was in good physical condition. At an urgent care facility, she was diagnosed with an asthma exacerbation and given steroids, but they didn’t help.

Soon, Goodell was spending hours each day in bed, overcome by profound tiredness and weakness. Even small activities wore her out. But none of the medical tests she received in Arizona and subsequently in Portland—a chest X-ray and CT scan, blood work, a cardiac stress test—showed abnormalities.

“There was no objective evidence of illness, and that makes it hard for anybody to believe you’re sick,” she told me.

Goodell started visiting long COVID web sites and chat rooms for people with chronic fatigue syndrome. Today, she’s convinced she has post-viral syndrome from an infection. One of the most common symptoms of long COVID is fatigue that interferes with daily life, according to the CDC, the Centers for Disease Control and Prevention.

There are several strategies for dealing with persistent fatigue. In cancer patients, “the best evidence favors physical activity such as tai chi, yoga, walking or low-impact exercises,” said Christian Sinclair, MD, an associate professor of palliative medicine at the University of Kansas Health System. The goal is to “gradually stretch patients’ stamina,” he said.

With long COVID, however, doing too much too soon can backfire by causing post-exertional malaise.” Pacing one’s activities is often recommended: doing only what’s most important, when one’s energy level is highest, and resting afterward. “You learn how to set realistic goals,” said Andrew Esch, MD, senior education advisor at the Center to Advance Palliative Care.

Cognitive behavioral therapy can help older adults with fatigue learn how to adjust expectations and address intrusive thoughts such as, “I should be able to do more.” At the University of Texas MD Anderson Cancer Center, management plans for older patients with fatigue typically include strategies to address physical activity, sleep health, nutrition, emotional health and support from family and friends.

“So much of fatigue management is about forming new habits,” said Ishwaria Subbiah, MD, a palliative care and integrative medicine physician at MD Anderson. “It’s important to recognize that this doesn’t happen right away: it takes time.”

Should Older Seniors Risk Major Surgery?

New, much-needed research offers guidance

Until recently, surprisingly little was known about probable outcomes when people have surgery late in life. Certain risks are becoming clearer now. Writing for KFF Health News journalist Judith Graham explains what new studies are finding and what some doctors and hospitals are doing to make major surgery safer for older people. Graham’s article was posted on the KHN website on Nov. 28, 2022, and also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Nearly one in seven older adults die within a year of undergoing major surgery, according to an important new study that sheds much-needed light on the risks seniors face when having invasive procedures.

Especially vulnerable are older patients with probable dementia (33 percent die within a year) and frailty (28 percent), as well as those having emergency surgeries (22 percent). Advanced age also amplifies risk: patients who were 90 or older were six times as likely to die [as] those ages 65 to 69.

The study in JAMA Surgery, published by researchers at Yale School of Medicine, addresses a notable gap in research: though patients 65 and older undergo nearly 40 percent of all surgeries in the United States, detailed national data about the outcomes of these procedures has been largely missing.

“As a field, we’ve been really remiss in not understanding long-term surgical outcomes for older adults,” said Zara Cooper, MD, a professor of surgery at Harvard Medical School and the director of the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

Of particular importance is information about how many seniors die, develop disabilities, can no longer live independently or have a significantly worsened quality of life after major surgery.

“What older patients want to know is, ‘What’s my life going to look like?’” Cooper said. “But we haven’t been able to answer with data of this quality before.”

Some older people are more likely than others to have a poor outcome from surgery.

In the new study, Thomas Gill, MD, and Yale colleagues examined claims data from traditional Medicare and survey data from the National Health and Aging Trends study spanning 2011 to 2017. (Data from private Medicare Advantage plans was not available at that time but will be included in future studies.)

Invasive procedures that take place in operating rooms with patients under general anesthesia were counted as major surgeries. Examples include procedures to replace broken hips, improve blood flow in the heart, excise cancer from the colon, remove gallbladders, fix leaky heart valves and repair hernias, among many more.

Older adults tend to experience more problems after surgery if they have chronic conditions such as heart or kidney disease; if they are already weak or have difficulty moving around; if their ability to care for themselves is compromised; and if they have cognitive problems, noted Gill, a professor of medicine, epidemiology, and investigative medicine at Yale.

Two years ago, Gill’s team conducted research that showed one in three older adults had not returned to their baseline level of functioning six months after major surgery. Most likely to recover were seniors who had elective surgeries for which they could prepare in advance.

In another study, published last year in the Annals of Surgery, his team found that about one million major surgeries occur in individuals 65 and older each year, including a significant number near the end of life. Remarkably, data documenting the extent of surgery in the older population has been lacking until now.

“This opens up all kinds of questions: Were these surgeries done for a good reason? How is appropriate surgery defined? Were the decisions to perform surgery made after eliciting the patient’s priorities and determining whether surgery would achieve them?” said Clifford Ko, MD, a professor of surgery at UCLA School of Medicine and director of the Division of Research and Optimal Patient Care at the American College of Surgeons.

As the older population grows, paying for major surgeries will be a challenge for Medicare. 

As an example of this kind of decision-making, Ko described a patient who, at 93, learned he had early-stage colon cancer on top of preexisting liver, heart and lung disease. After an in-depth discussion and being told that the risk of poor results was high, the patient decided against invasive treatment.

“He decided he would rather take the risk of a slow-growing cancer than deal with a major operation and the risk of complications,” Ko said.

Still, most patients choose surgery. Marcia Russell, MD, a staff surgeon at the Veterans Affairs Greater Los Angeles Healthcare System, described a 90-year-old patient who recently learned he had colon cancer during a prolonged hospital stay for pneumonia. “We talked with him about surgery, and his goals are to live as long as possible,” said Russell. To help prepare the patient, now recovering at home, for future surgery, she recommended he undertake physical therapy and eat more high-protein foods, measures that should help him get stronger.

“He may need six to eight weeks to get ready for surgery, but he’s motivated to improve,” Russell said.

The choices older Americans make about undergoing major surgery will have broad societal implications. As the 65-plus population expands, “covering surgery is going to be fiscally challenging for Medicare,” noted Robert Becher, MD, an assistant professor of surgery at Yale and a research collaborator with Gill. Just over half of Medicare spending is devoted to inpatient and outpatient surgical care, according to a 2020 analysis. 

What’s more, “nearly every surgical subspecialty is going to experience workforce shortages in the coming years,” Becher said, noting that in 2033, there will be nearly 30,000 fewer surgeons than needed to meet expected demand.

The goal is to minimize the harms of hospitalization.

—Zara Cooper, MD

These trends make efforts to improve surgical outcomes for older adults even more critical. Yet progress has been slow. The American College of Surgeons launched a major quality improvement program in July 2019, eight months before the COVID-19 pandemic hit. It requires hospitals to meet 30 standards to achieve recognized expertise in geriatric surgery. So far, fewer than 100 of the thousands of hospitals eligible are participating.

One of the most advanced systems in the country, the Center for Geriatric Surgery at Brigham and Women’s Hospital, illustrates what’s possible. There, older adults who are candidates for surgery are screened for frailty. Those judged to be frail consult with a geriatrician, undergo a thorough geriatric assessment and meet with a nurse who will help coordinate care after discharge.

Also initiated are “geriatric-friendly” orders for post-surgery hospital care. This includes assessing older patients three times a day for delirium (an acute change in mental status that often afflicts older hospital patients), getting patients moving as soon as possible and using non-narcotic pain relievers. “The goal is to minimize the harms of hospitalization,” said Cooper, who directs the effort.

She told me about a recent patient, whom she described as a “social woman in her early 80s who was still wearing skinny jeans and going to cocktail parties.” This woman came to the emergency room with acute diverticulitis and delirium; a geriatrician was called in before surgery to help manage her medications and sleep-wake cycle and recommend nonpharmaceutical interventions.

With the help of family members who visited this patient in the hospital and have remained involved in her care, “she’s doing great,” Cooper said. “It’s the kind of outcome we work very hard to achieve.”

Questions to Ask before Major Surgery

What you need to know to figure out whether it’s worth the risk

Back in November, Kaiser Health News columnist Judith Graham wrote about what older adults risk when they have a major operation. Readers wanted to know more, so she consulted experts and zeroed in on seven questions to ask a surgeon before surgery. Graham’s article was posted on the KHN website on January 3, 2023, and also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Larry McMahon, who turned 80 in December, is weighing whether to undergo a major surgery. Over the past five years, his back pain has intensified. Physical therapy, muscle relaxants and injections aren’t offering relief.

“It’s a pain that leaves me hardly able to do anything,” he said.

Should McMahon, a retired Virginia state trooper who now lives in Southport, NC, try spinal fusion surgery, a procedure that can take up to six hours? (Eight years ago, he had a lumbar laminectomy, another arduous back surgery.)

“Will I recover in six months—or in a couple of years? Is it safe for a man of my age with various health issues to be put to sleep for a long period of time?” McMahon asked, relaying some of his concerns to me in a phone conversation.

Older adults contemplating major surgery often aren’t sure whether to proceed. In many cases, surgery can be lifesaving or improve a senior’s quality of life. But advanced age puts people at greater risk of unwanted outcomes, including difficulty with daily activities, extended hospitalizations, problems moving around and the loss of independence.  

I wrote in November about a new study that shed light on some risks seniors face when having invasive procedures. But readers wanted to know more. How does one determine if potential benefits from major surgery are worth the risks? And what questions should older adults ask as they try to figure this out? I asked several experts for their recommendations. Here’s some of what they suggested.

What’s the goal of this surgery? Ask your surgeon, “How is this surgery going to make things better for me?” said Margaret “Gretchen” Schwarze, MD, an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health. Will it extend your life by removing a fast-growing tumor? Will your quality of life improve by making it easier to walk? Will it prevent you from becoming disabled, akin to a hip replacement?

If your surgeon says, “We need to remove this growth or clear this blockage,” ask what impact that will have on your daily life. Just because an abnormality such as a hernia has been found doesn’t mean it has to be addressed, especially if you don’t have bothersome symptoms and the procedure comes with complications, said Robert Becher, MD, and Thomas Gill, MD, of Yale University, authors of that recent paper on major surgery in older adults.

If things go well, what can I expect? Schwarze, a vascular surgeon, often cares for patients with abdominal aortic aneurysms, an enlargement in a major blood vessel that can be life-threatening if it bursts.

Here’s how she describes a “best case” surgical scenario for that condition: “Surgery will be about four to five hours. When it’s over, you’ll be in the ICU with a breathing tube overnight for a day or two. Then, you’ll be in the hospital for another week or so. Afterwards, you’ll probably have to go to rehab to get your strength back, but I think you can get back home in three to four weeks, and it’ll probably take you two to three months to feel like you did before surgery.”

Among other things people might ask their surgeon, according to a patient brochure Schwarze’s team has created: What will my daily life look like right after surgery? Three months later? One year later? Will I need help, and for how long? Will tubes or drains be inserted?

If things don’t go well, what can I expect? A “worst case” scenario might look like this, according to Schwarze: “You have surgery, and you go to the ICU, and you have serious complications. You have a heart attack. Three weeks after surgery, you’re still in the ICU with a breathing tube, and you’ve lost most of your strength, and there’s no chance of ever getting home again. Or, the surgery didn’t work, and still you’ve gone through all this.”

“People often think I’ll just die on the operating table if things go wrong,” said Emily Finlayson, MD, director of the UCSF Center for Surgery in Older Adults in San Francisco. “But we’re very good at rescuing people, and we can keep you alive for a long time. The reality is, there can be a lot of pain and suffering and interventions like feeding tubes and ventilators if things don’t go the way we hope.”

Given my health, age and functional status, what’s the most likely outcome? Once your surgeon has walked you through various scenarios, ask, “Do I really need to have this surgery, in your opinion?” and “What outcomes do you think are most likely for me?” Finlayson advised. Research suggests that older adults who are frail, have cognitive impairment or other serious conditions such as heart disease have worse experiences with major surgery. Also, seniors in their 80s and 90s are at higher risk of things going wrong.

“It’s important to have family or friends in the room for these conversations with high-risk patients,” Finlayson said. Many seniors have some level of cognitive difficulties and may need assistance working through complex decisions.

What are the alternatives? Make sure your physician tells you what the nonsurgical options are, Finlayson said. Older men with prostate cancer, for instance, might want to consider “watchful waiting,” ongoing monitoring of their symptoms, rather than risk invasive surgery. Women in their 80s who develop a small breast cancer may opt to leave it alone if removing it poses a risk, given other health factors.

Because of Larry McMahon’s age and underlying medical issues (a 2021 knee replacement that hasn’t healed, arthritis, high blood pressure), his neurosurgeon suggested he explore other interventions, including more injections and physical therapy, before surgery. “He told me, ‘I make my money from surgery, but that’s a last resort,’” McMahon said.

What can I do to prepare myself? “Preparing for surgery is really vital for older adults: if patients do a few things that doctors recommend—stop smoking, lose weight, walk more, eat better—they can decrease the likelihood of complications and the number of days spent in the hospital,” said Sandhya Lagoo-Deenadayalan, MD,  a leader in Duke University Medical Center’s Perioperative Optimization of Senior Health program [POSH].

When older patients are recommended to POSH, they receive a comprehensive evaluation of their medications, nutritional status, mobility, preexisting conditions, ability to perform daily activities and support at home. They leave with a “to-do” list of recommended actions, usually starting several weeks before surgery.

If your hospital doesn’t have a program of this kind, ask your physician, “How can I get my body and mind ready” before having surgery, Finlayson said. Also ask: “How can I prepare my home in advance to anticipate what I’ll need during recovery?”

What will recovery look like? There are three levels to consider: What will recovery in the hospital entail? Will you be transferred to a facility for rehabilitation? And what will recovery be like at home?

Ask how long you’re likely to stay in the hospital. Will you have pain, or aftereffects from the anesthesia? Preserving cognition is a concern, and you might want to ask your anesthesiologist what you can do to maintain cognitive functioning following surgery. If you go to a rehab center, you’ll want to know what kind of therapy you’ll need and whether you can expect to return to your baseline level of functioning.

During the COVID-19 pandemic, “a lot of older adults have opted to go home instead of to rehab, and it’s really important to make sure they have appropriate support,” said Rachelle Bernacki, MD, director of care transformation and postoperative services at the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

For some older adults, a loss of independence after surgery may be permanent. Be sure to inquire what your options are should that occur.

 

A Family Grapples with Death

What happens when a frail 94-year-old has a stroke

Kaiser Health News columnist Judith Graham writes movingly about her father-in-law’s last days at a time when hospitals and nursing homes were short-staffed and under pressure. Her article was posted on the KHN website on Dec. 8, 2022. It also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

It wasn’t the Thanksgiving holiday any of us had expected.

Two weeks before, my 94-year-old father-in-law, Melvin Zax, suffered a stroke after receiving dialysis and was rushed to a hospital near his residence in western New York.

There, he underwent a series of tests over the course of several days. With each test, Mel became more agitated. His hearing aids weren’t working right, and he didn’t understand what was happening.

Amid the hubbub of a busy hospital, Mel wasn’t sleeping at night. He became delirious, a frightening and all-too-common experience for older adults who are hospitalized.

For two days, Mel was housed in the emergency department; the hospital had no regular rooms available. Similar scenarios are playing out across the country, as hospitals stagger under a surge in respiratory illnesses and covid-19-fueled cases alongside acute staffing shortages. Older Americans are at particular risk: about one in five emergency department visits are made by people 60 and older.

An ongoing crisis in long term care options has contributed to the bottleneck. Some seniors are occupying hospital rooms longer than necessary because there’s no place else for them to go. Many nursing homes and home care agencies aren’t accepting new patients because they simply don’t have enough workers.

Staffing issues at my father-in-law’s hospital were apparent. My husband, who was at a conference in Montreal when his dad was first hospitalized, called repeatedly but couldn’t get through to a nurse or a doctor for hours. As far as we knew, Mel’s stroke was tended to promptly, but the lack of clear communication left us with lingering doubts. How often did nurses check on him in the subsequent hours and days? How were decisions about testing made, and what consideration was given to Mel’s advanced age?

Mel was a distinguished psychologist who’d worked part time until age 90 and remained mentally sharp. But he’d had diabetes for decades and since September 2020 had been getting dialysis three times a week, a grueling therapy for kidney failure. “I’m a wreck,” he would tell my husband over the phone after returning from a session.

Some things the hospital’s doctors recommended didn’t make sense.

I’d written about dialysis for the elderly, and I knew the statistics: patients 85 and older live, on average, two years after beginning treatment. Mel had already beaten the odds by surviving 26 months. Did the hospital staff realize how frail he was and adjust their treatment and testing regimens accordingly?

“Ask for a geriatrician consultation,” I advised my husband, who has legal and medical power of attorney for his father and was now at his side.

I worried that nothing being done at the hospital—electrocardiograms, CT scans, an attempted MRI scan (Mel couldn’t tolerate that), an order to wear a heart monitor—would change Mel’s prospects. And he was increasingly agitated, groaning and throwing his arms out in seeming distress.

Some of what hospital doctors suggested simply didn’t make sense. Mel had been taken off statins for high cholesterol in the past year; a hospital physician put him back on the medication, citing the risk of another stroke. Was there any chance it would really make a difference? (Statin therapy is not recommended for people near the end of life.)

Six days after his stroke, Mel was discharged to the nursing home where he’d been living for four months following a previous hospitalization. It’s part of a well-run senior living complex with a top-notch geriatrician who oversees medical care.

That geriatrician was the first to acknowledge that Mel might be dying. Gently, he told my husband that Mel had been depleted by all the interventions he’d received in the hospital and recommended that dialysis be stopped. Compassionately, he explained that Mel would probably pass within a week or two of ending the therapy.

Mel was barely conscious and unable to express what he wanted at this critical juncture. But my husband knew the ferocity of his father’s desire to live. “Let’s try one more session of dialysis and see what happens,” he told the doctor.

Advice from the hospice’s medical staff turned out to be essential. 

It didn’t work: Mel’s circulatory system was too compromised for dialysis to proceed. Over the next few days, Mel’s six grandchildren and three sons and their wives traveled to be at his side.

My husband realized it was time to arrange hospice care, and a social worker met with us to describe what that would entail. An aide would visit Mel several times a week, she explained, but that would take a few days to set up because of staffing issues. Meanwhile, a nurse would visit in the following days, and we could call the hospice 24/7 for help.

As it turned out, an aide never arrived, but access to the hospice’s medical staff proved essential. As he lay in bed, Mel’s breathing became ragged, and his chest heaved. With our encouragement, a nurse at the home called hospice, and orders were given to administer morphine every hour.

The next day, Mel seemed peaceful but more distant. There was a quiet in the room that hadn’t been there the day before. The hospice nurse arrived and observed that Mel’s breathing was halting for several seconds. Watch for these pauses and their lengthening, she told us. A few hours later, four of us sat at Mel’s side as his breathing slowed and then stopped.

That was four days before Thanksgiving.

How does one go on with a holiday under these circumstances? On the one hand, the entire family was together for the first time in many years. And there was lots to do: host a funeral, arrange for the weeklong Jewish mourning period and prepare food for various occasions. Including Thanksgiving.

On the other hand, there was little time to think about what we’d just witnessed or process our emotions.

That’s what we’re doing now, as Christmas decorations go up in our neighborhoods and holiday songs fill the airwaves. Remembering Mel. Feeling sad. Noticing the shadow of death just behind us. And resolving to live well in the new year, knowing this is what Mel would want.

Changing the Way You Think about Aging Can Improve Your Life

It’s good for everything from your memory to your health

Our culture teaches us to expect the worst of our later years and of older people. Research done by Yale psychologist Becca Levy has uncovered the damage that kind of ageism can do, but she has also found ways people can shed such beliefs. Journalist Judith Graham interviewed Levy for Kaiser Health News, which posted her article on the KHN website on April 11, 2022. 

People’s beliefs about aging have a profound impact on their health, influencing everything from their memory and sensory perceptions to how well they walk, how fully they recover from disabling illness and how long they live. 

When aging is seen as a negative experience (characterized by terms such as decrepit, incompetent, dependent and senile), individuals tend to experience more stress in later life and engage less often in healthy behaviors such as exercise. When views are positive (signaled by words such as wise, alert, accomplished and creative), people are more likely to be active and resilient and to have a stronger will to live.

These internalized beliefs about aging are mostly unconscious, formed from early childhood on as we absorb messages about growing old from TV, movies, books, advertisements and other forms of popular culture. They vary by individual, and they’re distinct from prejudice and discrimination against older adults in the social sphere.

More than 400 scientific studies have demonstrated the impact of individuals’ beliefs about aging. Now, the question is whether people can alter these largely unrecognized assumptions about growing older and assume more control over them.

In her new book, Breaking the Age Code: How Your Beliefs About Aging Determine How Long and Well You Live, Becca Levy of Yale University, a leading expert on this topic, argues we can. “With the right mind-set and tools, we can change our age beliefs,” she asserts in the book’s introduction.

Levy, a professor of psychology and epidemiology, has demonstrated in multiple studies that exposing people to positive descriptions of aging can improve their memory, gait, balance and will to live. All of us have an “extraordinary opportunity to rethink what it means to grow old,” she writes.

Recently, I asked Levy to describe what people can do to modify beliefs about aging. Our conversation, below, has been edited for length and clarity.

Q: How important are age beliefs, compared with other factors that affect aging?

In an early study, we found that people with positive age beliefs lived longer—a median of 7.5 additional years—compared with those with negative beliefs. Compared with other factors that contribute to longevity, age beliefs had a greater impact than high cholesterol, high blood pressure, obesity and smoking.

Q: You suggest that age beliefs can be changed. How?

That’s one of the hopeful messages of my research. Even in a culture like ours, where age beliefs tend to be predominantly negative, there is a whole range of responses to aging. What we’ve shown is it’s possible to activate and strengthen positive age beliefs that people have assimilated in different types of ways.

Q: What strategies do you suggest?

The first thing we can do is promote awareness of what our own age beliefs are.

A simple way is to ask yourself, “When you think of an older person, what are the first five words or phrases that come to mind?” Noticing which beliefs are generated quickly can be an important first step in awareness.

Q: What else can people do to increase awareness?

Another powerful technique is something I call “age belief journaling.” That involves writing down any portrayal of aging that comes up over a week. It could be a conversation you overhear in a coffee shop or something on social media or on your favorite show on Netflix. If there is an absence of older people, write that down too.

At the end of the week, tally up the number of positive and negative portrayals and the number of times that old people are absent from conversations. With the negative descriptions, take a moment and think, “Could there be a different way of portraying that person?”

Q: What comes next?

Becoming aware of how ageism and age beliefs are operating in society. Shift the blame to where it is due.

In the book, I suggest thinking about something that’s happened to an older person that’s blamed on aging—and then taking a step back and asking whether something else could be going on.

For example, when an older adult is forgetful, it’s often blamed on aging. But there are many reasons people might not remember something. They might have been stressed when they heard the information. Or they might have been distracted. Not remembering something can happen at any age.

Unfortunately, there’s a tendency to blame older people rather than looking at other potential causes for their behaviors or circumstances.

Q: You encourage people to challenge negative age beliefs in public.

Yes. In the book, I present 14 negative age beliefs and the science that dispels them. And I recommend becoming knowledgeable about that research.

For example, a common belief is that older people don’t contribute to society. But we know from research that older adults are most likely to recycle and make philanthropic gifts. Altruistic motivations become stronger with age. Older adults often work or volunteer in positions that make meaningful contributions. And they tend to engage in what’s called legacy thinking, wanting to create a better world for future generations.

In my own case, if I hear something concerning, I often need to take time to think about a good response. And that’s fine. You can go back to somebody and say, “I was thinking about what you said the other day. And I don’t know if you know this, but research shows that’s not actually the case.”

Q: Another thing you talk about is creating a portfolio of positive role models. What do you mean by that?

Focus on positive images of aging. These can be people you know, a character in a book, someone you’ve learned about in a documentary, a historical figure—they can come from many different sources.

I recommend starting out with, say, five positive images. With each one, think about qualities you admire and you might want to strengthen in yourself. One person might have a great sense of humor. Another might have a great perspective on how to solve conflicts and bring people together. Another might have a great work ethic or a great approach to social justice. There can be different strengths in different people that can inspire us.

Q: You also recommend cultivating intergenerational contacts.

We know from research that meaningful intergenerational contact can be a way to improve age beliefs. A starting point is to think about your five closest friends and what age they are. In my case, I realized that most of my friends were within a couple of years of my age. If that’s the case with you, think about ways to get to know people of other ages through a dance class, a book club, or a political group. Seeing older people in action often allows us to dispel negative age beliefs.

 

Needed: New Ways to Prepare Older People for Disasters

Hurricane Ian’s death toll among older adults exposes a widespread problem

When Hurricane Ian descended on Florida, most of those who died were at least 60 and had failed to evacuate. Journalist Judith Graham reports here on why that happened and on new efforts to help vulnerable, older people prep for disasters. Her article was posted on the Kaiser Health News (KHN) website on Nov. 2, 2022. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

All kinds of natural disasters—hurricanes, tornadoes, floods, wildfires, dangerous heat waves—pose substantial risks to older adults. Yet not enough seniors prepare for these events in advance, and efforts to encourage them to do so have been largely unsuccessful.

The most recent horrific example was Hurricane Ian, the massive storm that in September smashed into Florida’s southwestern coast—a haven for retirees—with winds up to 150 mph and storm surges exceeding 12 feet in some areas. At least 120 people died, most of them in Florida. Of those who perished, two-thirds were 60 or older. Many reportedly drowned and were found in their homes.

Why didn’t more older adults leave for safer areas, as authorities recommended? Understanding this is critically important as the population of older people expands and natural disasters become more frequent and intense with climate change.

“I think the story of Hurricane Ian that people will remember is the story of people who didn’t evacuate,” said Jeff Johnson, AARP’s Florida state director.

Even before the storm, there were worrisome signs that disaster preparedness was lagging. In an AARP survey this summer of 1,005 Florida residents 45 and older, 67 percent reported having a natural disaster emergency plan, compared with 75 percent in 2019. The declines were most notable among people with low incomes (less than $50,000 a year) and those who owned their homes.

Meanwhile, 61 percent of Florida residents 45 and older said they planned to shelter in place during the next bad storm. In 2019, the comparable figure was 55 percent.

The lessons of COVID haven’t been incorporated into disaster preparation yet. 

Johnson said concerns about the COVID-19 pandemic and inflation’s impact on budgets may have contributed to “a lot of people who were just not mentally prepared to leave.” More broadly, he faulted disaster preparation checklists that target seniors.

Mostly, these resources tell older adults to complete a long list of tasks before a crisis occurs. “Coming out of Ian, what’s become clear is that giving seniors materials with lots of steps they need to follow ends up being overwhelming,” Johnson told me. “The checklists aren’t working.”

Among the items that seniors are advised to assemble: enough nonperishable food, water and medications for several days; cash for 30 days of living expenses; hearing aids and glasses; flashlights and battery-powered lamps; extra batteries; and first-aid supplies.

Beyond that, older adults are encouraged to create a list of people who can help them in an emergency, familiarize themselves with evacuation routes, arrange for transportation and compile essential documents such as wills, powers of attorney and lists of their medical providers and medications.

Doing all this is especially challenging for older adults with hearing and vision impairments, cognitive problems, difficulties with mobility and serious chronic illnesses such as heart disease or diabetes.

Also at heightened risk are seniors without cars, cell phones that broadcast emergency alerts, extra money for lodging, or family members and friends who can help them get organized or take them in, if necessary, according to Lori Peek, director of the Natural Hazards Center and a professor of sociology at the University of Colorado-Boulder.

“It’s not age alone that renders elderly people vulnerable in disasters,” she noted. “It’s the intersection of age with other social forces” that affects people who are poor and represent racial and ethnic minorities.

This lesson has been painfully learned during the COVID pandemic, which has killed enormous numbers of vulnerable seniors. But it hasn’t been incorporated into disaster preparedness and response yet.

Sue Anne Bell, an assistant professor at the University of Michigan, who studies the health effects of disasters, said this must change. “We need to focus disaster preparedness on these vulnerable populations,” she said, adding that a one-size-fits-all approach won’t work and that outreach to vulnerable seniors needs to be tailored to their particular circumstances.

In a survey, 52 family caregivers all said they would never take a loved one with dementia to a disaster shelter. 

Coming up with better strategies to boost older adults’ ability to cope with disasters should be a national priority, not one specific to areas beset by hurricanes, because lack of preparedness is widespread.

In May 2019, Bell’s colleagues at the University of Michigan’s National Poll on Healthy Aging surveyed 2,256 adults ages 50 to 80 about emergency planning for natural or man-made disasters. Although nearly three in four respondents said they had experienced an event of this kind, just over half had a week’s supply of food and water available, and only 40 percent said they had talked to family or friends about how they would evacuate if necessary.

Least likely to have prepared for emergencies were seniors who live alone, a growing portion of the older population.

Of enormous concern are older adults with Alzheimer’s disease or other types of cognitive impairment living in their own homes, a larger group than those living in institutions.

When Lindsay Peterson, a research assistant professor at the University of South Florida, interviewed 52 family caregivers in 2021 and 2022, all of them said they would never take a loved one with dementia to a disaster shelter. Although Florida has created “special needs” shelters for people with disabilities or medical concerns, they’re noisy and chaotic and lack privacy.

Even older adults without dementia are loath to go to shelters because of these issues and because they don’t want to identify themselves as needing assistance, Peek noted.

Until now, disaster planning has focused on individuals taking responsibility for themselves. Older adults need community support.

Using feedback from her research, Peterson this year created a disaster preparedness guide for dementia caregivers in concert with the Alzheimer’s Association that presents information in an easy-to-understand format.

“A lot of caregivers told us, ‘Please help us do this but make it simpler. Every day I wake up and there’s a new crisis,’” Peterson said.

She noted that institutions such as nursing homes have been a focus of disaster planning for older adults in the wake of disasters such as Hurricane Katrina in New Orleans in 2005 and Superstorm Sandy, which hit the New York City metro area and New Jersey especially hard in 2012.

Now, the field needs to do more to address the needs of the vast majority of older adults who live at home, Peterson suggested.

What might that include? A report published by the Federal Emergency Management Agency and AARP in July calls for bringing together organizations that serve older adults and local, state and federal agencies responsible for emergency preparedness on a regular basis. Together, they could plan for reducing the impact of disasters on seniors.

Separately, a January 2020 report by the American Red Cross and the American Academy of Nursing recommends that home health agencies and other organizations serving older adults at home develop plans for helping clients through disasters. And more opportunities for older adults to participate in community-based disaster training should be made available.

Think of this as age-friendly disaster planning. Until now, the focus has been on individuals taking responsibility for themselves. This is a more communal approach, focused on building a stronger network of community support for older adults in times of crisis.

“All of us are thinking now that communities can’t be age-friendly or dementia-friendly if they’re not disaster-resilient,” said Johnson of AARP Florida. “And everyone who’s been through Ian, I suspect, will be more vigilant going forward, because people have been scared straight.”

 

A Photographer’s Rich Portrait of Aging

Her 12-year quest to document her own life 

What happens when a 70-something professional photographer sets out to record her own body as she ages and the bodies of other, older people, sometimes naked and sometimes not? In this article, Journalist Judith Graham interviews the photographer, Marna Clarke, for Kaiser Health News (KHN) and describes reactions—in the art world and beyond—to Clarke’s moving portraits of aging. Graham’s article was posted on the KHN website on October 7, 2022. It also ran in the San Francisco Chronicle. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

A dozen years ago, at age 70, Marna Clarke had a dream. She was walking on a sidewalk and rounded a corner. Ahead of her, she saw an end to the path and nothing beyond.

It was a turning point for Clarke. “I realized, ‘Oh my God, I’m nearer the end than the beginning,’” she said. Soon, she was seized by a desire to examine what she looked like at that time—and to document the results.

Clarke, a professional photographer decades before, picked up a camera and began capturing images of her face, hair, eyes, arms, legs, feet, hands, and torso. In many, she was undressed. “I was exploring the physical part of being older,” she told me.

It was a radical act: older women are largely invisible in our culture, and honest and unsentimental portraits of their bodies are almost never seen.

I found out there’s a taboo about showing older adults’ bodies—some people were just aghast.

—Marna Clarke

Before long, Clarke, who lives in Inverness, CA, turned her lens on her partner, Igor Sazevich, a painter and architect 11 years her senior, and began recording scenes of their life together. Eventually, she realized they were growing visibly older in these photographs. And she understood she was creating a multiyear portrait of aging.

The collection that resulted, which she titled “Time As We Know It,” this year won a LensCulture Critics’ Choice Award, given to 40 photographers on five continents. “There is a universality and humility in seeing these images which remind us of the power of love and the fragility of life,” wrote Rhea Combs of the Smithsonian Institution’s National Portrait Gallery, one of the judges.

Early on, some people were offended by the images Clarke displayed at galleries in the San Francisco Bay Area, near her home. “I found out there’s a taboo about showing older adults’ bodies—some people were just aghast,” she told me in a phone conversation.

But many people in their 50s, 60s, 70s and 80s expressed gratitude. “I learned that older people are dying for some kind of recognition and acceptance and that they want to feel seen—to feel that they’re not invisible,” Clarke said.

Art has many benefits in later life, both for creators and for those who enjoy their work. It can improve health by expanding well-being, cultivating a sense of purpose and countering beliefs such as the assumption that older age is defined almost exclusively by deterioration and decline, Gene Cohen, MD, wrote in The Creative Age: Awakening Human Potential in the Second Half of Life, published in 2000.

Perspective and acceptance of her own body have been benefits of her project. 

Cohen, a psychiatrist, was the first director of the Center for Aging, Health and Humanities at George Washington University and acting director of the National Institute on Aging from 1991 to 1993.

In 2006, Cohen published findings from the Creativity and Aging Study, conducted in San Francisco, CA, Brooklyn, NY, and the Washington, DC, area. Two groups of older adults were studied: those who participated weekly in arts programs led by professionals, and people who went about their usual business. Those in the first group saw doctors less often, used less medication, were more active and had better physical and mental health overall, the study found.

For Clarke, “perspective” and “acceptance of my body as it is” have been benefits of her 12-year project. As a young and middle-aged woman, she said, she was “obsessed” with and anxious about her appearance. “Now, I think there’s a beauty that comes out of people when they accept who they are,” she told me. “It’s altered how I look at myself and how I see others.”

Shortly after our first conversation, in early August, Clarke, now 82, found herself at another turning point with the death of Sazevich, 93, who had lymphoma and refused chemotherapy. The couple had been together since 2003 but hadn’t married.

Sazevich had fallen three times in the months before, broken his hip, contracted pneumonia in the hospital and returned home on hospice. As he lay in bed on his final day, receiving morphine and surrounded by family, two dogs belonging to one of his daughters came close, checking on him every hour. At the moment of his death, they growled, probably because “they felt a change in the energy,” Clarke said.

It takes a community to comfort an older adult who is coping with loss. 

“It was amazing—I have never been through an experience like that in my life,” she said about Sazevich’s death. “There was so much love in that room, you could cut it with a knife. I think it’s changed me. It’s given me a glimpse of what’s possible with humans.”

Everywhere she goes in Inverness, Clarke runs into people who tell her how sorry they are for her loss and ask if they can help. “I am overwhelmed by the care pouring over me from my friends and family,” she told me. “It’s like a huge embrace.”

It takes a community to comfort an older adult coping with loss, just as it takes a community to raise a child. Clarke said she is still “up and down emotionally … questioning what death is” as she processes her loss.

Eventually, Clarke said, she wants to restart work on “Time As We Know It.” 

“Because it’s about aging me,” she said. “My aging. And that’s what I’m committed to. It’s given me a purpose. And when you’re growing old, you need to have something you love and makes you feel alive.”

‘It’s Becoming Too Expensive to Be Alive’ 

Anxious older adults with limited incomes are struggling to cope

Because of inflation and other factors, millions of older people, who had been managing reasonably well on limited budgets, are now unable to make ends meet. Writing for Kaiser Health News, journalist Judith Graham interviews three women whose stories illustrate how easily even people who worked hard all their lives and did everything they were supposed to do can end up in a financial bind. Her article was posted on the KHN website on September 7, 2022. It also ran on CBS News.

Economic insecurity is upending the lives of millions of older adults as soaring housing costs and inflation diminish the value of fixed incomes.

Across the country, seniors who until recently successfully managed limited budgets are growing more anxious and distressed. Some lost work during the COVID-19 pandemic. Others are encountering unaffordable rent increases and the prospect of losing their homes. Still others are suffering significant sticker shock at grocery stores.

Dozens of older adults struggling with these challenges—none poor by government standards—wrote to me after I featured the Elder Index, a measure of the cost of aging, in a recent column. That tool, developed by researchers at the Gerontology Institute at the University of Massachusetts-Boston, suggests that 54 percent of older women who live alone have incomes below what’s needed to pay for essential expenses. For single men, the figure is 45 percent.

To learn more, I spoke at length to three women who reached out to me and were willing to share highly personal details of their lives. Their stories illustrate how unexpected circumstances—the pandemic and its economic after-effects, natural disasters, and domestic abuse—can result in unanticipated precarity in later life, even for people who worked hard for decades.

Bettye Cohen

“After 33 years living in my apartment, I will have to move since the new owners of the building are renovating all apartments and charging rents of over $1,800 to 2,500/month which I cannot afford.”

Cohen, 79, has been distraught since learning that the owners of her Towson, MD, apartment complex are raising rents precipitously as they upgrade units. She pays $989 monthly for a one-bedroom apartment with a terrace. A similar apartment that has been redone recently went on the market for $1,900.

This is a national trend affecting all age groups: As landlords respond to high demand, rent hikes this year have reached 9.2 percent.

Cohen has been told that her lease will be canceled at the end of January and that she’ll be charged $1,200 a month until it’s time for her apartment to be refurbished and for her to vacate the premises.

“The devastation, I cannot tell you,” she said during a phone conversation. “Thirty-three years of living in one place lets you know I’m a very boring person, but I’m also a very practical, stable person. I never in a million years would have thought something like this would happen to me.”

For those on a waiting list for senior housing, the wait can last more than two years.

During a long career, Cohen worked as a risk manager for department stores and as an insurance agent. She retired in 2007. Today, her monthly income is $2,426: $1,851 from Social Security after payments for Medicare Part B coverage are taken out, $308 from an individual retirement account and $267 from a small pension.

In addition to rent, Cohen estimates she spends $200 to $240 a month on food, $165 on phone and internet, $25 on Medicare Advantage premiums, $20 on dental care, $22 for gas and $100 or more for incidentals such as cleaning products and toiletries.

That doesn’t include nonroutine expenses, such as new partial dentures that Cohen needs (she guesses they’ll cost $1,200) or hearing aids that she purchased several years ago for $3,400, drawing on a small savings account. If forced to relocate, Cohen estimates moving costs will top $1,000.

Cohen has looked for apartments in her area, but many are in smaller buildings, without elevators and not readily accessible to someone with severe arthritis, which she has. One-bedroom units are renting for $1,200 and up, not including utilities, which might be an additional $200 or more. Waiting lists for senior housing top two years.

“I’m miserable,” Cohen told me. “I’m waking up in the middle of the night a lot of times because my brain won’t shut off. Everything is so overwhelming.”

Carrie England

“It’s becoming too expensive to be alive. I’ve lost everything and break down on a daily basis because I do not know how I can continue to survive with the cost of living.”

England, 61, thought she’d grow old in a three-bedroom home in Winchester, VA, that she said she purchased with her partner in 1999. But that dream exploded in January 2021.

Around that time, England learned to her surprise that her name was not on the deed of the house she’d been living in. She had thought that had been arranged, and she contacted a legal aid lawyer, hoping to recover money she’d put into the property. Without proof of ownership, the lawyer told her, she didn’t have a leg to stand on.

“My nest was the house. It’s gone. It was my investment. My peace of mind,” England told me.

England’s story is complicated. She and her partner ended their longtime romantic relationship in 2009 but continued living together as friends, she told me. That changed during the pandemic, when he stopped working and England’s work as a caterer and hospitality specialist abruptly ended.

“His personality changed a lot,” she said, and “I started encountering emotional abuse.”

I do not have a life. I don’t do anything other than try to find work, go to work and go home.

—Carrie England

Trying to cope, England enrolled in Medicaid and arranged for eight sessions with a therapist specializing in domestic abuse. Those ended in November 2021, and she hasn’t been able to find another therapist since. “If I wasn’t so worried about my housing situation, I think I could process and work through all the things that have happened,” she told me.

After moving out of her home early in 2021, England relocated to Ashburn, VA, where she rents an apartment for $1,511 a month. (She thought, wrongly, that she would qualify for assistance from Loudoun County.) With utilities and trash removal included, the monthly total exceeds $1,700.

On an income of about $2,000 a month, which she scrambles to maintain by picking up gig work whenever she can, England has less than $300 available for everything else. She has no savings. “I do not have a life. I don’t do anything other than try to find work, go to work, and go home,” she said.

England knows her housing costs are unsustainable, and she has put her name on more than a dozen waiting lists for affordable housing or public housing. But there’s little chance she’ll see progress on that front anytime soon.

“If I were a younger person, I think I would be able to rebound from all the difficulties I’m having,” she told me. “I just never foresaw myself being in this situation at the age I am now.”

Elaine Ross

“Please help! I just turned 65 and [am] disabled on disability. My husband is on Social Security and we cannot even afford to buy groceries. This is not what I had in mind for the golden years.”

When asked about her troubles, Ross, 65, talks about a tornado that swept through central Florida on Groundhog Day in 2007, destroying her home. Too late, she learned her insurance coverage wasn’t adequate and wouldn’t replace most of her belongings.

To make ends meet, Ross started working two jobs: as a hairdresser and a customer service representative at a convenience store. With her new husband, Douglas Ross, a machinist, she purchased a new home. Recovery seemed possible.

Then, Elaine Ross fell twice over several years, breaking her leg, and ended up having three hip replacements. Trying to manage diabetes and beset by pain, Ross quit working in 2016 and applied for Social Security Disability Insurance, which now pays her $919 a month.

She doesn’t have a pension. Douglas stopped working in 2019, no longer able to handle the demands of his job because of a bad back. He too doesn’t have a pension. With Douglas’ Social Security payment of $1,051 a month, the couple live on just over $23,600 annually. Their meager savings evaporated with various emergency expenditures, and they sold their home.

Their rent in Empire, AL, where they now live, is $540 a month. Other regular expenses include $200 a month for their truck and gas, $340 for Medicare Part B premiums, $200 for electricity, $100 for medications, $70 for phone, and hundreds of dollars—Ross didn’t offer a precise estimate—for food.

“All this inflation, it’s just killing us,” she said. Nationally, the price of food consumed at home is expected to rise 10 to 11 percent this year, according to the US Department of Agriculture.

To cut costs, Ross has been turning off her air conditioning during peak hours for electricity rates, 1 p.m. to 7 p.m., despite summer temperatures in the 90s or higher. “I sweat like a bullet and try to wear the least amount of clothes possible,” she said.

“It’s awful,” she continued. “I know I’m not the only old person in this situation, but it pains me that I lived my whole life doing all the right things to be in the situation I’m in.”

The Struggle to Find Home Health Care

Many families are in a bind because health workers are in short supply

Home health care workers are so hard to find right now that some families have to handle all the care of older relatives alone, and some older people, without family available, are entirely without care. Journalist Judith Graham describes the situation and its repercussions in this article written for Kaiser Health News. KHN posted her story on February 3, 2022; it also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.

Frail older adults are finding it harder than ever to get paid help amid acute staff shortages at home health agencies.

Several trends are fueling the shortages: hospitals and other employers are hiring away home health workers with better pay and benefits. Many aides have fallen ill or been exposed to COVID-19 during the recent surge of omicron cases and must quarantine for a time. And staffers are burned out after working during the pandemic in difficult, anxiety-provoking circumstances.

The implications for older adults are dire. Some seniors who are ready for discharge are waiting in hospitals or rehabilitation centers for several days before home care services can be arranged. Some are returning home with less help than would be optimal. Some are experiencing cutbacks in services. And some simply can’t find care.

Janine Hunt-Jackson, 68, of Lockport, NY, falls into this last category. She has post-polio syndrome, which causes severe fatigue, muscle weakness and, often, cognitive difficulties. Through New York’s Medicaid program, she’s authorized to receive 35 hours of care each week. But when an aide left in June, Hunt-Jackson contacted agencies, asked friends for referrals, and posted job notices on social media, with little response.

“A couple of people showed up and then disappeared. One man was more than willing to work, but he didn’t have transportation. I couldn’t find anybody reliable,” she said. Desperate, Hunt-Jackson arranged for her 24-year-old grandson, who has autism and oppositional defiant disorder, to move into her double-wide trailer and serve as her caregiver.

“It’s scary: I’m not ready to be in a nursing home, but without home care there’s no other options,” she said.

Because comprehensive data isn’t available, the scope and impact of current shortages can’t be documented with precision. But anecdotal reports suggest the situation is severe.

Most home care agencies have had to refuse new clients at times during the past year.

“Everyone is experiencing shortages, particularly around nursing and home health aides, and reporting that they’re unable to admit patients,” said William Dombi, president of the National Association for Home Care & Hospice. Some agencies are rejecting as many as 40 percent of new referrals, according to reports he’s received.

“We’re seeing increasing demand on adult protective services as a result of people with dementia not being able to get services,” said Ken Albert, RN, president of Androscoggin Home Healthcare and Hospice in Maine and chair of the national home care association’s board. “The stress on families trying to navigate care for their loved ones is just incredible.”

In mid-January, the Pennsylvania Homecare Association surveyed its members: Medicare-certified home health agencies, which provide assistance from aides and skilled nursing and therapy services, and state-licensed home care agencies, which provide nonmedical services such as bathing, toileting, cooking and housekeeping, often to people with disabilities covered by Medicaid. Ninety-three percent of Medicare-certified home health and hospice agencies and 98 percent of licensed agencies said they had refused referrals during the past year, according to Teri Henning, the association’s chief executive officer.

“Our members say they’ve never seen anything like this in terms of the number of openings and the difficulty hiring, recruiting and retaining staff,” she told me.

Lori Pavic is a regional manager in Pennsylvania for CareGivers America, an agency that provides nonmedical services, mostly to Medicaid enrollees who are disabled. “Our waiting list is over 200 folks at this time and grows daily,” she wrote in an email. “We could hire 500 [direct care workers] tomorrow and still need more.”

Another Pennsylvania agency that provides nonmedical services, Angels on Call, is giving priority for care to people who are seriously compromised and live alone. People who can turn to family or friends are often getting fewer services, said C.J. Weaber, regional director of business development for Honor Health Network, which owns Angels on Call.

“Most clients don’t have backup,” she said.

Families are doing their best to fill the gaps in home care.

This is especially true of older adults with serious chronic illnesses and paltry financial resources who are socially isolated—a group that’s “disproportionately affected” by the difficulties in accessing home health care, said Jason Falvey, DPT, an assistant professor of physical therapy and rehabilitation science at the University of Maryland School of Medicine.

Many agencies are focusing on patients being discharged from hospitals and rehab facilities. These patients, many of whom are recovering from COVID, have acute needs, and agencies are paid more for serving this population under complicated Medicare reimbursement formulas.

“People who have long-term needs and a high chronic disease burden, [agencies] just aren’t taking those referrals,” Falvey said.

Instead, families are filling gaps in home care as best they can.

Anne Tumlinson, founder of ATI Advisory, a consulting firm that specializes in long term care, was shocked when a home health nurse failed to show up for two weeks in December after her father, Jim, had a peripherally inserted central catheter put in for blood cell transfusions. This type of catheter, known as a PICC line, requires careful attention to prevent infections and blood clots and needs to be flushed with saline several times a day.

“No show from nurse on Friday, no call from agency,” Tumlinson wrote on LinkedIn. “Today, when I call, this 5 star home health agency informed me that a nurse would be out SOMETIME THIS WEEK. Meanwhile, my 81 year old mother and I watched youtube videos this weekend to learn how to flush the picc line and adjust the oxygen levels.”

Tumlinson’s father was admitted to the hospital a few days before Christmas with a dangerously high level of fluid in his lungs. He has myelodysplastic syndrome, a serious blood disorder, and Parkinson’s disease. No one from the home health agency had shown up by the time he was admitted.

Because her parents live in a somewhat rural area about 30 minutes outside Gainesville, FL, it wasn’t easy to find help when her father was discharged. Only two home health agencies serve the area, including the one that had failed to provide assistance.

“The burden on my mother is huge: she’s vigilantly monitoring him every second of the day, flushing the PICC line and checking his wounds,” Tumlinson said. “She’s doing everything.”

Many nursing homes are so understaffed that they can’t take new patients. 

Despite growing needs for home care services, the vast majority of pandemic-related, federal financial aid for health care has gone to hospitals and nursing homes, which are also having severe staffing problems. Yet all the parts of the health system that care for older adults are interconnected, with home care playing an essential role.

Abraham Brody, PhD, associate professor of nursing and medicine at New York University, explained these complex interconnections: when frail older patients can’t get adequate care at home, they can deteriorate and end up in the hospital. The hospital may have to keep older patients for several extra days if home care can’t be arranged upon discharge, putting people at risk of deteriorating physically or getting infections and making new admissions more difficult.

When paid home care or help from family or friends isn’t available, vulnerable older patients may be forced to go to nursing homes, even if they don’t want to. But many nursing homes don’t have enough staffers and can’t take new patients, so people are simply going without care.

Patients with terminal illnesses seeking hospice care are being caught up in these difficulties as well. Brody is running a research study with 25 hospices, and “every single one is having staffing challenges,” he said. Without enough nurses and aides to meet the demand for care, hospices are not admitting some patients or providing fewer visits, he noted.

Before the pandemic, hospice agencies could usually guarantee a certain number of hours of help after evaluating a patient. “Now, they really are not able to guarantee anything on discharge,” said Jennifer DiBiase, MSW, palliative care social work manager at Mount Sinai Health System in New York City. “We really have to rely on the family for almost all hands-on care.”

Many Older People Can’t Afford Basic Necessities 

The Elder Index paints a realistic picture of the true cost of living everywhere in the country

The federal poverty threshold supposedly reflects the current cost of living, but it doesn’t take health care expenses into account—or the way overall costs vary from one region to another. Yet that threshold determines who can get help from safety-net programs. The Elder Index has worked out the true, realistic cost of living for older people in every county and state in the country. Journalist Judith Graham describes its latest  findings in this article written for Kaiser Health News, posted on July 22, 2022. Her story also ran on Fortune.  

Fran Seeley, 81, doesn’t see herself as living on the edge of a financial crisis. But she’s uncomfortably close.

Each month, Seeley, a retired teacher, gets $925 from Social Security and a $287 disbursement from an individual retirement account. To make ends meet, she’s taken out a reverse mortgage on her Portland, ME, home that yields $400 monthly.

So far, Seeley has been able to live on this income—about $19,300 a year—by carefully monitoring her spending and drawing on limited savings. But should her excellent health worsen or she need assistance at home, Seeley doesn’t know how she’d pay for those expenses.

More than half of older women living alone—54 percent—are in a similarly precarious financial situation: either poor according to federal poverty standards or with incomes too low to pay for essential expenses. For single men, the share is lower but still surprising—45 percent.

That’s according to a valuable but little-known measure of the cost of living for older adults: the Elder Index, developed by researchers at the Gerontology Institute at the University of Massachusetts-Boston.

A new coalition, the Equity in Aging Collaborative, is planning to use the index to influence policies that affect older adults, such as property tax relief and expanded eligibility for programs that assist with medical expenses. Twenty-five prominent aging organizations are members of the collaborative.

The goal is to fuel a robust dialogue about “the true cost of aging in America,” which remains unappreciated, said Ramsey Alwin, president and chief executive of the National Council on Aging, an organizer of the coalition.

Nationally, and for every state and county in the United States, the Elder Index uses various public databases to calculate the cost of health care, housing, food, transportation, and miscellaneous expenses for seniors. It represents a bare-bones budget, adjusted for whether older adults live alone or as part of a couple; whether they’re in poor, good, or excellent health; and whether they rent or own homes, with or without a mortgage.

The poverty rate just doesn’t cut it as a realistic look at the struggles older adults are having. The Elder Index is a reality check.

—William Arnone 

Results from the analyses are eye-opening. In 2020, according to data supplied by Jan Mutchler, director of the Gerontology Institute, the index shows that nearly five million older women living alone, two million older men living alone and more than two million older couples had incomes that made them economically insecure.

And those estimates were before inflation soared to more than 9 percent—a 40-year high—and older adults continued to lose jobs during the second and third years of the pandemic. “With those stressors layered on, even more people are struggling,” Mutchler said.

Nationally and in every state, the minimum cost of living for older adults calculated by the Elder Index far exceeds federal poverty thresholds, which are used to calculate official poverty statistics. (Federal poverty thresholds used by the Elder Index differ slightly from federal poverty guidelines. Data for each state can be found here.)

One national example: the Elder Index estimates that a single older adult in good health, paying rent, needed $27,096, on average, for basic expenses in 2021—$14,100 more than the federal poverty threshold of $12,996. For couples, the gap between the index’s calculation of necessities and the poverty threshold was even greater.

Yet eligibility for Medicaid, food stamps, housing assistance and other safety net programs that help older adults is based on federal poverty standards, which don’t account for geographic variations in the cost of living or medical expenses incurred by older adults, among other factors. (This isn’t an issue for older adults alone; the poverty measures have been widely critiqued across age groups.)

“The poverty rate just doesn’t cut it as a realistic look at the struggles older adults are having,” said William Arnone, chief executive officer of the National Academy of Social Insurance, one of the new coalition’s members. “The Elder Index is a reality check.”

In April, University of Massachusetts researchers showed that Social Security benefits cover only a fraction of what older adults need for basic living expenses: 68 percent for a senior in good health who lives alone and pays rent and 81 percent for an older couple in the same situation.

“There’s a myth that Social Security and Medicare miraculously take care of all of people’s needs in older age,” said Alwin, of the National Council on Aging. “The reality is they don’t, and far too many people are one crisis away from economic insecurity.”

We should be using a reliable measure of economic security and at least know how well the programs we’re offering are doing.

—Paul Downey

Organizations across the country have been using the Elder Index to convince policy makers that older adults need more assistance. In New Jersey, where 54 percent of seniors are economically insecure, according to the index, advocates used the data to protect property-tax relief programs for older adults during the pandemic. In New York, where nearly 60 percent of seniors are economically insecure, advocates persuaded the legislature to raise the Medicaid income eligibility threshold.

In San Diego, where as many as 40 percent of seniors are economically insecure, Serving Seniors, a nonprofit agency, persuaded county officials to use pandemic-related stimulus payments to expand senior nutrition programs. As a result, the agency has been able to double production of home-delivered meals, to more than 1.5 million annually.

Officials are often wary of the financial impact of expanding programs, said Paul Downey, president and CEO of Serving Seniors. But, he said, “we should be using a reliable measure of economic security and at least know how well the programs we’re offering are doing.” By law, California’s Area Agencies on Aging use the Elder Index in their planning process.

Maine is No. 5 on the list of states ranked by the share of seniors living below the Elder Index, 56 percent. For someone in Fran Seeley’s situation (an older adult who is in excellent health, lives alone, owns a house and doesn’t pay a monthly mortgage), the index suggests $22,560 a year is necessary—$3,200 more than Seeley’s annual income and $9,500 above the federal poverty threshold.

A look at Seeley’s budget reveals how quickly necessary expenses accumulate: $2,041 annually for Medicare Part B (this is deducted from her Social Security check), $4,156 for property and stormwater taxes, $390 for home insurance, $320 for furnace cleaning, $1,440 for heat, $125 for water, $500 for gas and electricity, $300 for property maintenance, $1,260 for phone and internet, $150 for car registration, $640 for car insurance, $840 for gas at current prices, $300 for car maintenance, and $4,800 for food.

The total: $17,262. And that doesn’t include the cost of medications, clothing, toiletries, any kind of entertainment, or other incidentals.

Seeley’s great luxury is caring for four cats, which she describes as “the light of my life.” Their annual wellness checks cost about $400 a year, while their food costs about $1,080.

With inflation now making her budget even tighter, “it means I have to cut back in any way I can. I find myself going into stores and saying, ‘No, I don’t need that,’” Seeley said. “The biggest worry I have is not being able to afford living in my home or becoming ill. I know that medical expenses could wipe me out in no time financially.”

Villages: Boutique Options for Aging in Place

But the villages movement has growing pains as it expands

There are hundreds of villages scattered across the country, organized by older people for older people, in order to provide the kinds of services that make it possible to age in place. But as journalist Judith Graham explains here, a major question is whether they can expand to reach people with lower incomes. Graham wrote her article for Kaiser Health News, which posted her story on March 14, 2022. It also ran on the Sacramento Bee.

Twenty years ago, a group of pioneering older adults in Boston created an innovative organization for people committed to aging in place: Beacon Hill Village, an all-in-one social club, volunteer collective, activity center, peer-to-peer support group and network for various services.

Its message of “we want to age our way in our homes and our community” was groundbreaking at the time and commanded widespread attention. Villages would mobilize neighbors to serve neighbors, anchor older adults in their communities and become an essential part of the infrastructure for aging in place in America, experts predicted. 

Today, there are 268 such villages with more than 40,000 members in the United States, and an additional 70 are in development—a significant accomplishment, considering how hard it is to get these organizations off the ground. But those numbers are a drop in the bucket given the needs of the nation’s 54 million older adults. And villages remain a boutique, not a mass-market, option for aging in place.

Now, people invested in the village movement are asking tough questions about its future. Can these grassroots organizations be seeded far more widely in communities across the country as baby boomers age? Can they move beyond their white, middle-class roots and attract a broader, more diverse membership? Can they forge partnerships that put them on a more stable operational and financial footing?

Villages share common features, although each is unique. Despite their name, physical structures are not part of villages. Instead, they’re membership organizations created by and for older adults whose purpose is to help people live independently while staying in their own homes. Typically, villages help arrange services for members: a handyman to fix a broken faucet, a drive to and from a doctor’s appointment, someone to clean up the yard or shovel the snow. Volunteers do most of the work.

Also, villages connect members to one another, hosting discussion groups, sponsoring outings, offering classes and organizing social events. “I’ve lived here a long time, but I really didn’t know a lot of people living in my neighborhood,” said Nancy Serventi, 72, a retired trial lawyer who joined Beacon Hill Village nearly five years ago. “Now, because of the village, I almost always meet people on the street who I can stop and say hello to.”

In principle, this model of neighbors helping neighbors can work in all kinds of communities, adapted for particular needs. Andrew Scharlach, an emeritus professor of aging at the University of California-Berkeley and a leading researcher on villages, believes the potential for growth is considerable—a view shared by several other aging experts. His work has found that village members have more confidence about aging in place because they expect support will be there when they need it.

In practice, however, the fierce “we’ll do it our way” independence of villages, their reliance on a patchwork of funding (membership dues, small grants and donations), and the difficulty of keeping volunteers and members engaged have been significant obstacles to growth.

What you have are a lot of fiercely independent, hyperlocal organizations scrambling to keep their head above water, and a lot of inefficiencies. 

—Joel Shapira

“Villages’ long-term sustainability requires more institutional support and connection, whether from local or state governments, or Older American[s] Act programs or partnerships with health care providers,” Scharlach told me.

“We have been brilliant about creating a sense of community and giving people a sense of belonging and being cared for,” said Susan McWhinney-Morse, 88, a co-founder of Beacon Hill Village. “But can what we do be scaled broadly? That’s the critical question.”

Consider how small villages are. According to the latest data from the Village to Village Network, a national organization that disseminates best practices, 35 percent have 50 or fewer members; only 6 percent have more than 400. Budgets are modest, with two-thirds of villages operating on $75,000 a year or less and only 3 percent spending more than $400,000.

“What you have are a lot of fiercely independent, hyperlocal organizations scrambling to keep their head above water, and a lot of inefficiencies,” said Joel Shapira, who served on the board of the Village to Village Network for six years. “What you need are a lot more orchestrated efforts to bring villages together.”

That’s happening in California, where a coalition of villages is working in sync to expand its impact and seek state funding. Recently, Village Movement California, representing 44 villages with about 7,000 collective members, submitted a $3 million funding request to the state, which has embraced volunteerism and aging in place in its new Master Plan for Aging. Priorities include bringing new and existing villages into underserved communities and creating a training institute to promote equity and inclusion, said Charlotte Dickson, Village Movement California’s executive director.

Early discussions are underway with Sistahs Aging with Grace & Elegance,  a California organization dedicated to Black women.

“This concept, people in the community taking care of each other, is not new to the African American community,” said Carlene Davis, a Sistahs Aging co-founder. “But having it in a formalized structure surrounding aging in place intentionally doesn’t exist. We’re at the stage where we’re asking, ‘Can we envision a village model that is culturally responsive to the needs of our community?’” 

There’s a lot that villages do to promote health and well-being, and I would love to see a health plan really work with villages to help support their growth. 

—Tyler Cromer 

Another coalition, Washington Area Villages Exchange, represents 75 villages that have opened or are under development in the Washington, DC, metropolitan area. Affiliates in the district are supported, in part, by city funding, which rose to nearly $1 million annually during the pandemic, according to Gail Kohn, coordinator of Age-Friendly D.C.

On a $50,000 annual budget, Legacy Collaborative Senior Village helps 321 low-income adults in the district, most of them African Americans, access transportation, food, and home and community-based services, and learn how to advocate for themselves with service providers.

“The seniors in our communities are very neighborly, but we had to show them how they could do things on a larger scale if they worked collectively,” said Katrina Polk, the village’s interim executive director and CEO of Dynamic Solutions for the Aging, a consulting firm.

In Colorado, A Little Help has pursued another strategy that many villages are contemplating: forging closer ties with organizations such as Area Agencies on Aging, senior centers, and senior housing complexes. “COVID inspired a fresh look at how we can work together with partners in our communities,” said Barbara Hughes Sullivan, national director of the Village to Village Network.

Since January 2020, A Little Help—which has 970 members in metropolitan Denver, northern Colorado, and the western part of the state—has received $200,000 to $250,000 a year from local Area Agencies on Aging. Services supported by this funding stream include frequent “how are you doing” calls, in-person visits, and “kindness kits” of books, puzzles or treats that are dropped on members’ doorsteps—all of which eased social isolation during the pandemic, said Hilary Simmons, A Little Help’s executive director.

Because services are government funded, A Little Help doesn’t charge membership fees, which can be prohibitively high for many older adults. (Beacon Hill Village’s are $675 a year for an individual and $975 for a couple, with lower subsidized fees for 20 percent of members.) Instead, it asks for voluntary contributions, which constitute 2.5 percent of its $1 million annual budget. The largest portion, 42 percent, comes from in-kind services donated by 4,000 volunteers.

Working with Medicare Advantage plans is also an emerging area of interest. Since 2020, plans have been able to offer supplemental benefits that address nonmedical concerns such as home modifications or “social needs,” explained Tyler Cromer of ATI Advisory, a consulting firm that has worked with Village Movement California. “There’s a lot that villages do to promote health and well-being, and I would love to see a health plan really work with villages to help support their growth,” Cromer said.

That won’t be easy, however, without a stronger research base that can help villages make the case for collaboration, but that is likely “years away,” said Kohn of Washington, DC. “We need to show that villages and the social engagement that is their mainstay are making an impact on people’s health and longevity,” she said. “If we can do that, we should be able to get funding through health plans and health systems for villages.”

 

Advance Care Planning for Guns

Ensuring that they remain in safe hands, whatever happens to their owners

What happens to gun-owners’ guns if they develop dementia or when they die? Journalist Judith Graham describes the problems that can develop and a way to plan ahead, so that the guns are safely transferred to others, according to their owners’ wishes. She wrote her article for Kaiser Health News, and it was posted on the KHN website on April 27, 2022. Her story also ran on U.S. News & World Report. 

Kerri Raissian didn’t know what to do about her father’s guns when he died of COVID-19 in December at age 86 and left her executor of his estate.

Her father, Max McGaughey, hadn’t left a complete list of his firearms and where they were stored, and he hadn’t prepared a realistic plan for responsibly transferring them to family members.

What’s more, McGaughey had lived alone for at least a year at his home in Weimar, TX, after being diagnosed with dementia in October 2020—a situation Raissian realized was potentially unsafe but didn’t know how to address.

Now, a new tool can help gun owners and family members plan ahead for safe firearm use and transfers in the event of disability or death: the Firearm Life Plan, created by researchers at the University of Colorado and the Rocky Mountain Regional VA Medical Center in Denver.

Think of it as advance care planning for guns—a way for someone to describe what they want to have happen to their firearms should they die or become physically or cognitively disabled and unable to use them responsibly.

The goal is to prevent accidental injuries that can result if older gun owners forget to store firearms safely, their hearing and vision are impaired, they become seriously depressed or a medical condition such as arthritis prevents them from handling firearms adeptly. Another goal is to ensure that firearms are transferred safely to responsible new owners when the need arises.

As many as 60 percent of people who are struggling with dementia live in homes that have firearms. 

This is a real concern because 42 percent of Americans 65 and older live in households with guns, according to the Pew Research Center, and more than 100 people die of firearm injuries in the United States each day. Among adults ages 50 and older, 84 percent of firearm-related deaths are suicides.

The Firearm Life Plan has four parts. First, there’s a list of warning signs (physical, cognitive, behavioral and emotional) that might cause a gun owner to use a gun inappropriately. Among them are symptoms associated with dementia, whose dangerous nexus with firearm ownership was the topic of a KHN investigation in 2018.

Up to 60 percent of people with dementia live in homes with a firearm, according to an overview of gun-related injury and death published in 2019.

The Firearm Life Plan kit stresses personal responsibility, safety and the importance of being prepared, themes that older owners and family members emphasized in focus groups conducted by researchers.

Key messages for owners are “this is your decision” and “it’s voluntary,” said Emmy Betz, MD, co-founder of the Colorado Firearm Safety Coalition and a University of Colorado researcher who led the project. Also, the kit notes that people’s plans may change over time, and the worksheets gun owners fill out are not legally binding.

“We talk a lot about safe gun storage. This really challenges us to make sure that guns are handled appropriately when an owner dies or experiences health declines,” said Cassandra Crifasi, director of research and policy at the Center for Gun Violence Solutions at the Johns Hopkins Bloomberg School of Public Health.

A second part of the guide features conversation prompts for family members and friends who might be concerned about an older gun owner and for older adults who recognize the value of planning ahead. Among them: 

“You always taught me about firearm safety. That’s why I wanted to talk about some changes I’ve noticed lately.”

“Do you think it’s time to have someone give you an honest assessment about how you’re handling your firearms these days?”

“If I’m ever incapacitated or die, I need to make sure my firearms are taken proper care of. Having a conversation about what to do is important to me.”

Conversations of this sort are bound to be difficult since they touch on fundamental issues of identity, autonomy, safety and mortality.

“I’ve seen several people that I’ve really been worried about and had conversations with a couple of them that haven’t gone particularly well,” said Richard Abramson, founder of Colorado’s Centennial Gun Club and a former board member of NSSF, a firearm industry trade group.

“In my opinion, it’s much harder to get someone to relinquish their firearms than their car keys because of this strong feeling that I need to protect myself and my loved ones,” he added.

“I would ask ‘Who is the person you trust the most to come to you and tell you you’re beginning to lose it?’” said Michael Victoroff, MD, 72, a physician who is a competitive shooter and firearms safety instructor. “You’ve got to tell that person you want him to be straight with you when the time comes, even though it’s a horrible thing to talk about.”

The third piece of the Firearm Life Plan is the most straightforward. It calls for people to create an inventory of their firearms, where they’re stored (including codes to lockboxes, storage sheds and gun safes), who should get the firearms when the owner dies or is willing to relinquish them and when transfers should occur.

Some gun owners have so many guns that they aren’t sure just how many they own. 

Khalil Spencer, 68, a retired scientist from Los Alamos National Laboratory and a member of the board of directors of the Los Alamos Sportsmen’s Club, is among the legions of gun owners who haven’t assembled this kind of information. When I asked him how many guns he had, he responded, “At least a dozen, I’ve lost track.”

In some ways Spencer is well prepared: after a “mini-stroke” eight years ago, he talked to his family and asked a former colleague to help his wife dispose of his firearms should he become incapacitated or die. Spencer wants the colleague to take some guns, give others to Spencer’s two younger brothers and sell whatever is left behind.

Still, Spencer acknowledged, he hasn’t inventoried his firearms or included plans for them in his will. “At this point, it’s all been done verbally and via email,” he told me.

Similarly, David Yamane, 53, a professor of sociology at Wake Forest University who has written extensively about America’s gun culture, hadn’t thought about describing what should happen to his guns in his will before he reviewed the Firearm Life Plan. Altogether, he and his wife have 18 firearms.

Because gun owners care deeply about personal protection (two-thirds of owners cite this as a major reason for having firearms), it might be hard for them to give up guns as they grow older, Yamane said. “There would have to be some way of compensating for that feeling of vulnerability,” he suggested. Possibilities include installing a home alarm system, buying a dog and moving in with someone else or to a senior living complex.

Barriers to using the plan might also arise because gun owners are “incredibly resistant to being told they shouldn’t be doing what they’re doing,” Victoroff said. He plans to transfer ownership of all his firearms to a “gun trust” and name himself, his wife, and his children as joint trustees with equal rights. Altogether, Victoroff estimates he owns “more than 20, less than 30” firearms.

The fourth component of the guide is a “legacy” section that asks gun owners to share memories and stories about their firearms and what they’ve meant to them.

“This becomes a plan for transferring family knowledge, and I think that’s really lovely,” said Raissian, a third-generation Texan who now researches gun violence prevention at the University of Connecticut. “Some of the guns in my dad’s estate are my grandfather’s, and I’m pretty sure Dad would have told me the stories if I’d asked, which I didn’t, unfortunately.”

As for disseminating the Firearm Life Plan, Betz hopes that gun shops, shooting ranges, gun industry groups and aging organizations will make copies available. She’s in discussion with several groups, but none have publicly endorsed the plan yet. 

Top Experts Question the Value of Advance Care Planning

A controversy has developed over end-of-life care

Some medical experts have begun to question whether it’s a good idea to draw up a document specifying what kind of care you want if you’re seriously ill and can’t speak for yourself. Others are pushing back. Kaiser Health News (KHN) columnist Judith Graham considers both sides of the controversy in this article, which was posted on KHN’s website on January 6, 2022.

For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill—living wills, do-not-resuscitate orders and other written materials expressing treatment preferences.

Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

“Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said R. Sean Morrison, MD, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a coauthor of a recent opinion piece advancing this argument in JAMA.

“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: it doesn’t achieve the results that we hoped it would,” said Diane Meier, MD, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and coauthor of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences—a major objective.

“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” said James Tulsky, MD, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”

The reasons are varied and documented in dozens of research studies. People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes—such as receiving treatment at home—simply aren’t available.

Already, the priority is to help seriously ill people make complicated decisions.

But this critique of advance care planning is highly controversial and has received considerable pushback.

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Rebecca Sudore, MD, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California-San Francisco. This progress shouldn’t be discounted, she said.

Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.

When people with serious illnesses have conversations of this kind, “our research shows they experience less anxiety, more control over their care, are better prepared for the future and are better able to communicate with their families and clinicians,” said Jo Paladino, MD, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.

Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said J. Randall Curtis, MD, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values and wishes for the future with his wife and palliative care specialists.

“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in a piece about his experiences.

Only 37 percent of adults have advance directives.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.

But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier, of Mount Sinai.

She noted that only 37 percent of adults have completed written advance directives—in her view, a sign of uncertainty about their value.

Other problems can compromise the usefulness of these documents. A patient’s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Scott Halpern, MD, a professor at the University of Pennsylvania Perelman School of Medicine, who studies end-of-life and palliative care.

For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.

“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.

There’s strong support for naming a health care surrogate or proxy to make decisions on your behalf. 

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

Morrison spoke of his alarm early in the pandemic when older adults with COVID-19 would go to emergency rooms, and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing COVID and the possibilities of recovery,” even though most older adults ended up surviving, he said.

For all the controversy over written directives, there is strong support among experts for another component of advance care planning—naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form. 

“This won’t always be your spouse or your child or another family member: it should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who cochairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.

Among tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the Conversation Project, Respecting Choices and Caring Conversations; and videos about health care decisions at ACP Decisions

The Centers for Disease Control and Prevention also has a comprehensive list of resources

COVID Spotlights the Ageism in Health Care

Death toll among older people shows urgent need for changes

The staggering death toll among older people who have contracted COVID has many more people, worldwide, thinking about what needs to change in medical care and elsewhere. In this article for Kaiser Health News, journalist Judith Graham reports on new health care strategies being adopted in the United States. Her piece was posted on KHN’s website on November 5, 2021.

Earlier this year, the World Health Organization announced a global campaign to combat ageism—discrimination against older adults that is pervasive and harmful but often unrecognized. 

“We must change the narrative around age and ageing” and “adopt strategies to counter” ageist attitudes and behaviors, WHO concluded in a major report accompanying the campaign.

Several strategies WHO endorsed—educating people about ageism, fostering intergenerational contacts, and changing policies and laws to promote age equity—are being tried in the United States. But a greater sense of urgency is needed in light of the coronavirus pandemic’s shocking death toll, including more than 500,000 older Americans, experts suggest.

“COVID hit us over the head with a two-by-four, [showing that] you can’t keep doing the same thing over and over again and expect different results” for seniors, Jess Maurer, executive director of the Maine Council on Aging, said in an October webinar on ageism in health care, sponsored by KHN and the John A. Hartford Foundation. “You have to address the root cause—and the root cause here is ageism.”

Some experts believe there’s a unique opportunity to confront this concern because of what the country has been through. Here are some examples of what’s being done, particularly in health care settings.

Distinguishing old age from disease. In October, a group of experts from the United States, Canada, India, Portugal, Switzerland and the United Kingdom called for old age to be removed as one of the causes and symptoms of disease in the 11th revision of the International Classification of Diseases, a global resource used to standardize health data worldwide.

Aging is a normal process, and equating old age with disease “is potentially detrimental,” the experts wrote in the Lancet. Doing so could result in inadequate clinical evaluation and care and an increase in “societal marginalisation and discrimination” against older adults, they warn.

Identifying ageist beliefs and language. Groundbreaking research published in 2015 by the FrameWorks Institute, an organization that studies social issues, showed that many people associate aging with deterioration, dependency and decline—a stereotype that almost surely contributed to policies that harmed older adults during the pandemic. By contrast, experts understand that older adults vary widely in their abilities and that a significant number are healthy, independent and capable of contributing to society.

Using this and subsequent research, the Reframing Aging Initiative, an effort to advance cultural change, has been working to shift how people think and talk about aging, training organizations across the country. Instead of expressing fatalism about aging (“a silver tsunami that will swamp society”), it emphasizes ingenuity, as in “we can solve any problem if we resolve to do so,” said Patricia D’Antonio, project director and vice president of policy and professional affairs at the Gerontological Society of America. Also, the initiative promotes justice as a value, as in “we should treat older adults as equals.”

Since it began, the American Medical Association, the American Psychological Association and the Associated Press have adopted bias-free language around aging, and communities in Colorado, New Hampshire, Massachusetts, Connecticut, New York and Texas have signed on as partners.

Tackling ageism at the grassroots level. In Colorado, Changing the Narrative, a strategic awareness campaign, has hosted more than 300 workshops educating the public about ageist language, beliefs and practices in the past three years. Now, it’s launching a campaign calling attention to ageism in health care, including a 15-minute video set to debut in November.

“Our goal is to teach people about the connections between ageism and poor health outcomes and to mobilize both older people and [health] professionals to advocate for better medical care,” said Janine Vanderburg, director of Changing the Narrative.

Faced with the pandemic’s horrific impact, the Maine Council on Aging earlier this year launched the Power in Aging Project, which is sponsoring a series of community conversations around ageism and asking organizations to take an “anti-ageism pledge.” 

The goal is to educate people about their own “age bias”—largely unconscious assumptions about aging—and help them understand “how age bias impacts everything around them,” said Maurer. For those interested in assessing their own age bias, a test from Harvard University’s Project Implicit is often recommended. (Sign in and choose the “age IAT” on the next page.)

Changing education for health professionals. Two years ago, Harvard Medical School began integrating education in geriatrics and palliative care throughout its curriculum, recognizing that it hadn’t been doing enough to prepare future physicians to care for seniors. Despite the rapid growth of the older population, only 55 percent of US medical schools required education in geriatrics in 2020, according to the latest data from the Association of American Medical Colleges.

Andrea Schwartz, MD, an assistant professor of medicine, directs Harvard’s effort, which teaches students about everything from the sites where older adults receive care (nursing homes, assisted living, home-based programs, community-based settings) to how to manage common geriatric syndromes such as falls and delirium. Also, students learn how to talk with older patients about what’s most important to them and what they most want from their care.

Schwartz also chaired a committee of the academic programs in geriatrics that recently published updated minimum competencies in geriatrics that any medical school graduate should have.

Altering professional requirements. Sharon Inouye, MD, also a professor of medicine at Harvard, suggests additional approaches that could push better care for older adults forward. When a physician seeks board certification in a specialty or doctors, nurses or pharmacists renew their licenses, they should be required to demonstrate training or competency in “the basics of geriatrics,” she said. And far more clinical trials should include a representative range of older adults to build a better evidence base for their care.

Inouye, a geriatrician, was particularly horrified during the pandemic when doctors and nurses failed to recognize that seniors with COVID-19 were presenting in hospital emergency rooms with “atypical” symptoms such as loss of appetite and delirium. Such “atypical” presentations are common in older adults, but instead of receiving COVID tests or treatment, these older adults were sent back to nursing homes or community settings where they helped spread infections, she said.

Bringing in geriatrics expertise. If there’s a silver lining to the pandemic, it’s that medical professionals and health system leaders observed firsthand the problems that ensued and realized that older adults needed special consideration.

“Everything that we as geriatricians have been trying to tell our colleagues suddenly came into sharp focus,” said Rosanne Leipzig, MD, a professor of geriatrics at the Icahn School of Medicine at Mount Sinai in New York City.

Now, more Mount Sinai surgeons are asking geriatricians to help them manage older surgical patients, and orthopedic specialists are discussing establishing a similar program. “I think the value of geriatrics has gone up as institutions see how we care for complicated older adults and how that care improves outcomes,” Leipzig said.

Building age-friendly health systems. “I believe we are at an inflection point,” said Terry Fulmer, president of the John A. Hartford Foundation, which is supporting the development of age-friendly health systems with the American Hospital Association, the Catholic Health Association of the United States and the Institute for Healthcare Improvement. (The John A. Hartford Foundation is a funder of KHN.)

More than 2,500 health systems, hospitals, medical clinics and other health care providers have joined this movement, which sets four priorities (“the 4Ms”) in caring for older adults: attending to their mobility, medications, mentation (cognition and mental health) and what matters most to them—the foundation for person-centered care.

Creating a standardized framework for improving care for seniors has helped health care providers and systems know how to proceed, even amid the enormous uncertainty of the past couple of years. “We thought [the pandemic] would slow us down, but what we found in most cases was the opposite—people could cling to the 4Ms to have a sense of mastery and accomplishment during a time of such chaos,” Fulmer said.

Saying a Wrenching Goodbye to My Longtime Primary Care Doctor

A foretaste of physician shortages to come as many older doctors begin to retire

Medical authorities are predicting a huge shortage of primary care physicians and specialists in the not-too-distant future, just as the population of older Americans is exploding. After losing her own doctor to retirement, journalist Judith Graham takes a broader look at the way medicine is changing. Kaiser Health News posted her article on the KHN website on October 12, 2021. The story also ran in the Washington Post. 

I hadn’t expected the tears.

My primary care doctor and I were saying goodbye after nearly 30 years together.

“You are a kind and a good person,” he told me after the physical exam, as we wished each other good luck and good health.

“I trust you completely—and always have,” I told him, my eyes overflowing.

“That means so much to me,” he responded, bowing his head.

Will I ever have another relationship like the one with this physician, who took time to ask me how I was doing each time he saw me? Who knew me from my first months as a young mother, when my thyroid went haywire, and who since oversaw all my medical concerns, both large and small?

It feels like an essential lifeline is being severed. I’ll miss him dearly.

This isn’t my story alone; many people in their 50s, 60s and 70s are similarly undergoing this kind of wrenching transition. A decade from now, at least 40 percent of the physician workforce will be 65 or older, according to data from the Association of American Medical Colleges (AAMC). If significant numbers of doctors retire, as expected, physician shortages will swell. Earlier this year, the AAMC projected an unmet need for up to 55,200 primary care physicians and 86,700 specialists by 2033, amid the rapid growth of the [older] population.

Stress from the COVID pandemic has made the outlook even worse, at least in the near term. When the Physicians Foundation, a nonprofit research organization, surveyed 2,504 doctors in May and June, 61 percent reported “often experiencing” burnout associated with financial and emotional strain. Two percent said they had retired because of the pandemic; another 2 percent had closed their practices.

Twenty-three percent of the doctors surveyed said they’d like to retire during the next year.

When doctor-patient relationships end, the patient’s medical issues can be overlooked.

Baby boomers, like me, whose medical needs are intensifying even as their longtime doctors bow out of practice, are most likely to be affected.

“There’s a lot of benefit to having someone who’s known your medical history for a long time,” especially for older adults, said Janis Orlowski, MD, AAMC’s chief health care officer. When relationships with physicians are disrupted, medical issues that need attention can be overlooked, and people can become less engaged in their care, said Gary Price, MD, president of the Physicians Foundation.

My doctor, who’s survived two bouts of cancer, didn’t mention the pandemic during our recent visit. Instead, he told me he [was] turning 75 a week before he closed the practice at the end of October. Having practiced medicine for 52 years, 40 as a solo practitioner, “it’s time for me to spend more time with family,” he explained.

An intensely private man who’s averse to publicity, he didn’t want his name used for this article. I know I’m lucky to have had a doctor I could rely on with complete confidence for so long. Many people don’t have this privilege because of where they live, their insurance coverage, differences in professional competence and other factors.

With a skeletal staff—his wife is the office manager—my doctor has been responsible for 3,000 patients, many of them for decades. One woman sobbed miserably during a recent visit, saying she couldn’t imagine starting over with another physician, he told me.

At one point, when my thyroid levels were out of control, I saw my physician monthly. After my second pregnancy, when this problem recurred, I brought the baby and her toddler brother in a double stroller into the exam room. One or the other would often cry sympathetically when he drew my blood.

I remember once asking when a medical issue I was having—the flu? a sore throat?—would resolve. He pointed upward and said, “Only Hashem knows.” A deeply religious man, he wasn’t afraid to acknowledge the body’s mysteries or the limits of medical knowledge.

“Give it a few days and see if you get better,” he frequently advised me. “Call if you get worse.”

Older people often have trouble finding a new doctor who is accepting patients. 

At each visit, my doctor would open a large folder and scribble notes by hand. My file is more than four inches thick. He never signed up for electronic medical records. He’s not monetizing his practice by selling it. For him, medicine was never about money.

“Do you know the profit margins this hospital makes?” he asked at our last visit, knowing my interest in health care policy and finance. “And how do you think they do it? They cut costs wherever they can and keep the nursing staff as small as possible.”

Before a physical exam, he’d tell a joke—a way to defuse tension and connect with a smile. “Do you know the one about …” he’d begin before placing his fingers on my throat (where the thyroid gland is located) and squeezing hard.

Which isn’t to say that my doctor was easygoing. He wasn’t. Once, he insisted I go to the emergency room after I returned from a long trip to South Asia with a very sore leg and strange pulsing sensations in my chest. An ultrasound was done and a blood clot, discovered.

The young doctors in the ER wanted to give me intravenous blood thinner and send me home with a prescription. My doctor would have nothing of it. I was to stay in the hospital overnight and be monitored every few hours, efficiency and financial considerations be damned. He was formidable and intransigent, and the younger physicians backed down.

At that last meeting, my doctor scribbled the names of two physicians on a small sheet of paper before we said our goodbyes. Both would take good care of me, he said. When I called, neither was accepting new patients. Often, I hear this from older friends: they can’t find physician practices that are taking new patients.

The transition to a new physician can be hard for patients and also for doctors. 

Price, who’s 68, went through this when his family physician announced she was retiring and met with him in January to work out who might take over his care. Price was admitted into the practice of a younger physician with a good reputation only because he asked a medical colleague to intervene on his behalf. Even then, the first available appointment was in June.

Orlowski had a similar experience two years ago when searching for a new primary care doctor for her elderly parents. “Most of the practices I contacted weren’t accepting new patients,” she told me. It took six months to find a physician willing to see her parents—again, with the help of medical colleagues.

I’m lucky. A friend of mine has a physician daughter, part of an all-women medical practice at a nearby university hospital. One of her colleagues had openings and I got on her schedule in December. My friend’s daughter recommends her highly.

Still, it will mean starting over, with all the dislocation that entails. And these transitions are hard for patients and doctors alike.

Several weeks ago, I received a letter from my doctor, likely his last communication, which I read with a lump in my throat.

“To my beloved patients,” he wrote. “I feel so grateful for the opportunity to treat you and develop relationships with you and your families that I will always treasure. … I bid you all adieu. I hope and pray for your good health. I will miss each and every one of you and express to you my appreciation for so many wonderful years of doing what I love, caring for and helping people.”

 

Minister for Older Adults Has Seen How Pervasive Ageism Is

She’s also seen the courage it takes to push back against it

In a wide-ranging interview, journalist Judith Graham asks the minister of older adults of a famous New York City church about her job and what it’s taught her about aging and older people. Graham wrote her piece for  Kaiser Health News, and KHN posted it on September 2, 2021. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Later life is a time of reassessment and reflection. What sense do we make of the lives we have lived? How do we come to terms with illness and death? What do we want to give to others as we grow older?

Lynn Casteel Harper, 41, has thought deeply about these and other spiritual questions. She’s the author of an acclaimed book on dementia and serves as the minister of older adults at Riverside Church in New York City, an interdenominational faith community known for its commitment to social justice. Most of the church’s 1,600 members are 65 and older.

Every Thursday from September to June, Harper runs programs for older adults that include Bible study, lunch, concerts, lectures, educational sessions and workshops or other forms of community-building. She also works with organizations throughout New York committed to dismantling ageism.

I spoke with Harper recently about the spiritual dimension of aging. Our conversation, below, has been edited for length and clarity.

Q: What does a minister of older adults do?

A large part of my job is presence and witness—being with people one-on-one in their homes, at the bedside in hospitals or nursing homes, or on the phone, these days on Zoom, and journeying with them through the critical junctures of their life.

Sometimes if people are going through really difficult experiences, especially medically, it’s easy for the story of the illness and the suffering to take over. Part of my role is to affirm the other dimensions. To say you are valuable despite your sickness and through your sickness. And to affirm that the community, the church is with you, and that doesn’t depend on your capacity or your abilities.

Q: Can you give me an example of someone who reached out to you?

I can think of one today—a congregant in her 70s who’s facing a surgery. She had a lot of fear leading up to the surgery and she felt there could be a possibility she wouldn’t make it through.

So, she invited me to her home, and we were able to spend an afternoon talking about experiences in her life, about the things that were important to her and the ways she’d like the church to be there for her in this time. And then we were able to spend some time in prayer.

Q: What kind of spiritual concerns do you find older congregants bringing to you?

One of the things, undeniably, is death and dying. I see a lot of older adults wanting to express their concerns and desires regarding that.

I can think of one woman who wanted to plan out her memorial service. It was really important for her to think about what would be special for the congregation and her family—a gift she wanted to leave behind.

I rarely encounter a fearfulness about what will happen when someone dies. It’s more about: What kind of care will I receive before I go? Who will care for me? I hear that especially from people who are aging solo. And I think the church has an opportunity to say we are a community that will continue to care for you.

Q: What other spiritual concerns regularly arise?

People are looking back on their lives and asking, “How do I make sense of the things that maybe I regret or maybe am proud or am ambivalent about? What do those experiences mean to me now and how do I want to live the rest of my life?”

We invite story sharing. For instance, we did a program where we asked people to share an important object from their home and talk about how you came to have it and why it’s important to you.

For another program, we asked, “What is a place that’s been important to you and why?” That ended up being a discussion about “thin places”—a Celtic concept—where it feels like the veil between this world and the next is very thin and where you feel a connection with the divine.

Q: Your work revolves around building community. Help me understand what that means.

That’s another theme of spirituality and aging. In middle life and earlier in life, we’re incentivized to be self-sufficient, to focus on what you can accomplish and build up in yourself. In later life, I see some of that shedding away and community becoming a really important value.

There are many types of communities. A faith community isn’t based on shared interests, like a knitting club or a sports team. It’s something deeper and wider. It’s a commitment to being with one another beyond an equal exchange—beyond your ability to pay or repay what I give to you in kind. It’s a commitment to going the extra mile with you, no matter what.

Q: How did the pandemic and spiritual concerns change or influence the nature of spiritual discussions?

Every Sunday, our congregation offers a moment of silence for the victims of COVID-19. And every Sunday, we list the names of congregants who are sick and who died, not only of COVID. It’s built into our practice to acknowledge sickness and death. And that became something even more needed.

As much as there was a lot of worry about isolation and our older adults, in many ways our ties with one another became stronger. I saw a tremendous amount of compassion—people extending themselves in very gracious ways. People asking, “Can I deliver groceries? Does anyone need a daily phone call? What can I do?”

Q: What about pandemic-related loss?

The grief has been heavy and will live with us for a while. I think that the ongoing work of the church now is to understand what to do in the wake of this pandemic. Because there have been multiple layers of loss—the loss of loved ones, the loss of mobility, the loss of other abilities. There have been significant changes for people, emotionally, mentally, financially or physically. Much of our work will be acknowledging that.

Q: What have you learned about aging through this work?

I’ve learned how real and pervasive ageism is. And I’ve been brought into the world of what ageism does, which is to bring shame in its wake. So that people, instead of moving toward community, if they feel like they’re compromised physically or in some other way, the temptation is to withdraw. I’m pained by that.

Q: What else have you learned?

How wildly creative and liberating aging can be. I’m around people who have all kinds of experience: all these years, all these tragedies and triumphs and everything in between. And I see them every day showing up. There’s this freedom of being without apology.

I’m so appreciative of the creativity. The honesty. And the real, radical attention they pay to each other and the world around them. I’m always remarking how many of our older adults pay attention to things that I hadn’t noticed.

Q: It sounds like a form of bravery.

Yes, that’s right. Courage. The courage to almost be countercultural. To say, even if the culture tells me I don’t have a place or I don’t really matter, I’m going to live in a way that pushes back against that. And I’m really going to see myself and others around me. So they’re not invisible, even if they’re invisible in a larger cultural sense.

Those of us who aren’t of advanced age yet, we often think we’re doing a favor by being around older people and listening to their stories. I don’t see it that way at all. It’s not charity to be around older adults. I am a better person, a better minister, our church is a better place because of our older members, not despite them.

It reflects poorly that our imagination is so stunted and limited when it comes to aging—that we can’t see all the gifts that are lost, all the creativity and the care and the relationships that are lost when we don’t interact with older adults. That’s a real spiritual deficit in our society.

The Surprising Importance of Casual Acquaintances

These low-key relationships have health benefits for older adults

Your undemanding, everyday connections with everyone from your neighbors to your local pharmacist—people you barely know—are important. Journalist Judith Graham explains how and why in this article she wrote for Kaiser Health News (KHN), which posted her piece online on August 2,2021. The story also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.

In May, Vincent Keenan traveled from Chicago to Charlottesville, VA, for a wedding—his first trip out of town since the start of the pandemic.

“Hi there!” he called out to customers at a gas station where he’d stopped on his way to the airport. “How’s your day going?” he said he asked the Transportation Security Administration agent who checked his ID. “Isn’t this wonderful?” he exclaimed to guests at the wedding, most of whom were strangers.

“I was striking up conversations with people I didn’t know everywhere I went,” said Keenan, 65, who retired in December as chief executive officer of the Illinois Academy of Family Physicians. “Even if they just grunted at me, it was a great day.”

It wasn’t only close friends Keenan missed seeing during 15 months of staying home and trying to avoid COVID-19. It was also dozens of casual acquaintances and people he ran into at social events, restaurants, church and other venues.

These relationships with people we hardly know or know only superficially are called “weak ties”—a broad and amorphous group that can include anyone from your neighbors or your pharmacist to members of your book group or fellow volunteers at a school.

Like Keenan, who admitted he’s an unabashed extrovert, many older adults are renewing these connections with pleasure after losing touch during the pandemic.

Feeling connected to other people, not just the people who are closest to you, turns out to be incredibly important.

—Gillian Sandstrom 

Casual relationships have several benefits, according to researchers who’ve studied them. These ties can cultivate a sense of belonging, provide bursts of positive energy, motivate us to engage in activities, and expose us to new information and opportunities—all, without the emotional challenges that often attend close relationships with family and friends.

Multiple studies have found that older adults with a broad array of “weak” as well as “close” ties enjoy better physical and psychological well-being and live longer than people with narrower, less diverse social networks. Also, older adults with broad, diverse social networks have more opportunities to develop new relationships when cherished friends or family members move away or die. 

“Feeling connected to other people, not just the people who are closest to you, turns out to be incredibly important,” said Gillian Sandstrom, a senior lecturer in the department of psychology at the University of Essex in England.

Sandstrom’s research has found that people who talk to more acquaintances daily tend to be happier than people who have fewer of these interactions. Even talking to strangers makes people feel less lonely and more trusting, she has discovered.

Claire Lomax, 76, of Oakland, CA, who’s unmarried, has made a practice of chatting with strangers all her life. Among her greatest pleasures in recent years was volunteering at the Oakland Police Department, where she would ask patrol officers about their families or what was happening at the station.

“I never wanted a man of my own, but I like to be around them,” she explained. “So, I got to have my guy buzz without any complications, and I felt recognized and appreciated,” Lomax told me. Since becoming fully vaccinated, she’s volunteering in person at the police stations again—a deep source of satisfaction.

In places like coffee shops and gyms, you can feel part of a community. 

Even people who describe themselves as introverts enjoy the positivity that casual interactions can engender.

“In fact, people are more likely to have purely positive experiences with weak ties” because emotional complications are absent, said Katherine Fiori, a prominent researcher and chair of the psychology department at Adelphi University in Garden City, NY.

Lynn Eggers, 75, a retired psychologist in Minneapolis, loved going to coffee shops and the gym before COVID hit. “In both places, you can be in a group and alone,” she told me. “You can choose to talk to someone or not. But you feel you’re part of the community.”

At a light-rail station, Eggers would strike up conversations with strangers: two police officers, who told her about growing up in Somalia, a working-class Texan, whose daughter won a scholarship to Harvard, a young Vietnamese woman whose parents worried she was abandoning her culture.

When Eggers stopped taking public transportation for fear of COVID, she missed “getting these glimpses into other ways of seeing the world.” Instead, she started chatting with neighbors in daily walks around her neighborhood—another way to feel connected.

Many people may have found that neighbors, mail carriers and delivery people became more important during the pandemic—simply because they were around when others were not, said Karen Fingerman, a professor of human ecology at the University of Texas-Austin. As pandemic restrictions lift, “the key is to get out in daily life again” and re-engage with a variety of people and activities, she recommended.

Helen Bartos, 69, a retired clinical psychologist, lives in a condominium community in Rochester, NY. “With COVID, a whole group of us started getting together outside,” she told me. “We’d bring out chairs and drinks, wear masks, and sit around and talk. It was very bonding. All of these people are neighbors; now I would call some of them friends.”

Ellie Mixter-Keller, 66, of Milwaukee, turned to social gatherings sponsored by the activity group Meetup six years ago after a divorce disrupted her life. “It was my salvation. It exposed me to a bunch of new people who I didn’t have to date or have to dinner,” she said. Now that she’s fully vaccinated, she’s busy almost every night of the week attending Meetup events and informal get-togethers arranged by people she’s met.

In some cases, varying views of COVID vaccines have made casual interactions more difficult. Patty Beemer, 61, of Hermosa Beach, CA, used to go swing-dancing two or three times a week before the pandemic. “It’d be 20 seconds of chitchat and just dance” before all those events were canceled, she said.

In the past several months, however, the swing-dance community in and around Los Angeles has split, with some events requiring proof of vaccination and others open to everyone.

“Before, everyone danced with everyone, without really thinking about it. Now, I don’t know if it’s going to be like that. I’m not sure how much mixing is going to happen,” Beemer said. “And that sense of shared humanity, which is so meaningful to all of us, may be harder to find.”

 

‘They Treat Me Like I’m Old and Stupid’

Older people protest ageist incidents in medical care 

Ageism is all too common in medical settings, and it’s been escalating—and getting more attention—because of the pandemic. Journalist Judith Graham describes the problems older people are encountering in this article written for Kaiser Health News. KHN posted her story on October 20, 2021. It also ran on CNN.

Joanne Whitney, PharmD, 84, a retired associate clinical professor of pharmacy at the University of California-San Francisco, often feels devalued when interacting with health care providers.

There was the time several years ago when she told an emergency room doctor that the antibiotic he wanted to prescribe wouldn’t counteract the kind of urinary tract infection she had.

He wouldn’t listen, even when she mentioned her professional credentials. She asked to see someone else, to no avail. “I was ignored and finally I gave up,” said Whitney, who has survived lung cancer and cancer of the urethra and depends on a special catheter to drain urine from her bladder. (An outpatient renal service later changed the prescription.)

Then, earlier this year, Whitney landed in the same emergency room, screaming in pain, with another urinary tract infection and a severe anal fissure. When she asked for Dilaudid, a powerful narcotic that had helped her before, a young physician told her, “We don’t give out opioids to people who seek them. Let’s just see what Tylenol does.”

Whitney said her pain continued unabated for eight hours.

“I think the fact I was a woman of 84, alone, was important,” she told me. “When older people come in like that, they don’t get the same level of commitment to do something to rectify the situation. It’s like ‘Oh, here’s an old person with pain. Well, that happens a lot to older people.’”

Whitney’s experiences speak to ageism in health care settings, a long-standing problem that’s getting new attention during the COVID pandemic, which has killed more than half a million Americans, age 65 and older.

Ageism occurs when people face stereotypes, prejudice or discrimination because of their age. The assumption that all older people are frail and helpless is a common, incorrect stereotype. Prejudice can consist of feelings such as “older people are unpleasant and difficult to deal with.” Discrimination is evident when older adults’ needs aren’t recognized and respected or when they’re treated less favorably than younger people.

Almost 20 percent of Americans who are 50 or older say they have experienced discrimination in health care.

In health care settings, ageism can be explicit. An example: plans for rationing medical care (“crisis standards of care”) that specify treating younger adults before older adults. Embedded in these standards, now being implemented by hospitals in Idaho and parts of Alaska and Montana, is a value judgment: young peoples’ lives are worth more because they presumably have more years left to live.

Justice in Aging, a legal advocacy group, filed a civil rights complaint with the US Department of Health and Human Services in September, charging that Idaho’s crisis standards of care are ageist and asking for an investigation.

In other instances, ageism is implicit. Julie Silverstein, MD, president of the Atlantic division of Oak Street Health, gives an example of that: doctors assuming older patients who talk slowly are cognitively compromised and unable to relate their medical concerns. If that happens, a physician may fail to involve a patient in medical decision-making, potentially compromising care, Silverstein said. Oak Street Health operates more than 100 primary care centers for low-income seniors in 18 states.

Emogene Stamper, 91, of the Bronx in New York City, was sent to an under-resourced nursing home after becoming ill with COVID in March. “It was like a dungeon,” she remembered, “and they didn’t lift a finger to do a thing for me.” The assumption that older people aren’t resilient and can’t recover from illness is implicitly ageist.

Stamper’s son fought to have his mother admitted to an inpatient rehabilitation hospital where she could receive intensive therapy. “When I got there, the doctor said to my son, ‘Oh, your mother is 90,’ like he was kind of surprised, and my son said, ‘You don’t know my mother. You don’t know this 90-year-old,’” Stamper told me. “That lets you know how disposable they feel you are once you become a certain age.”

At the end of the summer, when Stamper was hospitalized for an abdominal problem, a nurse and nursing assistant came to her room with papers for her to sign. “Oh, you can write!” Stamper said the nurse exclaimed loudly when she penned her signature. “They were so shocked that I was alert, it was insulting. They don’t respect you.”

Nearly 20 percent of Americans age 50 and older say they have experienced discrimination in health care settings, which can result in inappropriate or inadequate care, according to a 2015 report. One study estimates that the annual health cost of ageism in America, including over- and undertreatment of common medical conditions, totals $63 billion.

One nursing home resident in every five has persistent pain, and a significant number don’t get adequate treatment.

Nubia Escobar, 75, who emigrated from Colombia nearly 50 years ago, wishes doctors would spend more time listening to older patients’ concerns. This became an urgent issue two years ago when her longtime cardiologist in New York City retired to Florida and a new physician had trouble controlling her hypertension.

Alarmed that she might faint or fall because her blood pressure was so low, Escobar sought a second opinion. That cardiologist “rushed me—he didn’t ask many questions and he didn’t listen. He was sitting there talking to and looking at my daughter,” she said.

It was Veronica Escobar, an elder law attorney, who accompanied her mother to that appointment. She remembers the doctor being abrupt and constantly interrupting her mother. “I didn’t like how he treated her, and I could see the anger on my mother’s face,” she told me. Nubia Escobar has since seen a geriatrician, who concluded she was overmedicated.

The geriatrician “was patient,” Nubia Escobar told me. “How can I put it? She gave me the feeling she was thinking all the time what could be better for me.”

Pat Bailey, 63, gets little of that kind of consideration in the Los Angeles County, CA, nursing home where she’s lived for five years since having a massive stroke and several subsequent heart attacks. “When I ask questions, they treat me like I’m old and stupid and they don’t answer,” she told me in a telephone conversation.

One nursing home resident in every five has persistent pain, studies have found, and a significant number don’t get adequate treatment. Bailey, whose left side is paralyzed, said she’s among them. “When I tell them what hurts, they just ignore it or tell me it’s not time for a pain pill,” she complained.

Most of the time, Bailey feels like “I’m invisible” and like she’s seen as “a slug in a bed, not a real person.” Only one nurse regularly talks to her and makes her feel she cares about Bailey’s well-being.

“Just because I’m not walking and doing anything for myself doesn’t mean I’m not alive. I’m dying inside, but I’m still alive,” she told me.

They wanted a doctor who would help them live, not figure out how they’re going to die.

—Shelli Bischoff 

Ed Palent, 88, and his wife, Sandy, 89, of Denver, similarly felt discouraged when they saw a new doctor after their long-standing physician retired. “They went for an annual checkup and all this doctor wanted them to do was ask about how they wanted to die and get them to sign all kinds of forms,” said their daughter Shelli Bischoff, who discussed her parents’ experiences with their permission.

“They were very upset and told him, ‘We don’t want to talk about this,’ but he wouldn’t let up. They wanted a doctor who would help them live, not figure out how they’re going to die.”

The Palents didn’t return and instead joined another medical practice, where a young doctor barely looked at them after conducting cursory examinations, they said. That physician failed to identify a dangerous staphylococcus bacterial infection on Ed’s arm, which was later diagnosed by a dermatologist. Again, the couple felt overlooked, and they left.

Now they’re with a concierge physician’s practice that has made a sustained effort to get to know them. “It’s the opposite of ageism: it’s ‘We care about you and our job is to help you be as healthy as possible for as long as possible,’” Bischoff said. “It’s a shame this is so hard to find.”

Intimidated by Smartphones or Tablets? Help Is Available

New resources spring up to meet seniors’ needs in the pandemic 

Though the internet has come to the rescue for many older adults isolated by the pandemic, others own digital devices but don’t fully understand how to use them—or have no idea. Journalist Judith Graham, a columnist for Kaiser Health News (KHN), reports on the many ways elders can learn more about computers, smartphones and tablets. Her story was posted on the KHN website on June 24, 2021. 

Six months ago, Cindy Sanders, 68, bought a computer so she could learn how to email and have Zoom chats with her great-grandchildren.

It’s still sitting in a box, unopened.

“I didn’t know how to set it up or how to get help,” said Sanders, who lives in Philadelphia and has been extremely careful during the coronavirus pandemic.

Like Sanders, millions of older adults are newly motivated to get online and participate in digital offerings after being shut inside, hoping to avoid the virus, for more than a year. But many need assistance and aren’t sure where to get it.

A recent survey from AARP, conducted in September and October, highlights the quandary. It found that older adults boosted technology purchases during the pandemic, but more than half (54 percent) said they needed a better grasp of the devices they’d acquired. Nearly four in 10 people (37 percent) admitted they weren’t confident about using these technologies.

Sanders, a retired, hospital operating room attendant, is among them. “Computers put the fear in me,” she told me, “but this pandemic, it’s made me realize I have to make a change and get over that.”

With a daughter’s help, Sanders plans to turn on her new computer and figure out how to use it by consulting materials from Generations on Line. Founded in 1999, the Philadelphia organization specializes in teaching older adults about digital devices and navigating the internet. Sanders recently discovered it through a local publication for seniors.

Before the pandemic, Generations on Line provided free, in-person training sessions at senior centers, public housing complexes, libraries and retirement centers. When those programs shut down, it created an online curriculum for smartphones and tablets, and new tutorials on Zoom and telehealth, as well as a family coaching kit, to help older adults with technology. All are free and available to people across the country.

Demand for Generations on Line’s services rose tenfold during the pandemic as many older adults became dangerously isolated and cut off from needed services.

Those who had digital devices and knew how to use them could do all kinds of activities online: connect with family and friends, shop for groceries, order prescriptions, take classes, participate in telehealth sessions and make appointments to get COVID vaccines. Those without were often at a loss—with potentially serious consequences.

There’s a national hotline for those who need technical support. 

“I have never described my work as a matter of life or death before,” said Angela Siefer, executive director of the National Digital Inclusion Alliance, an advocacy group for expanding broadband access. “But that’s what happened during the pandemic, especially when it came to vaccines.”

Other organizations specializing in digital literacy for older adults are similarly seeing a surge of interest. Cyber-Seniors, which pairs older adults with high school or college students who serve as technology mentors, has trained more than 10,000 seniors since April 2020—three times the average of the past several years. (Services are free and grants and partnerships with government agencies and nonprofit organizations supply funding, as is true for several of the organizations discussed here.)

Older adults using digital devices for the first time can call 1-844-217-3057 and be coached over the phone until they’re comfortable pursuing online training. “A lot of organizations are giving out tablets to seniors, which is fantastic, but they don’t even know the basics, and that’s where we come in,” said Brenda Rusnak, Cyber-Seniors’ managing director. One-on-one coaching is also available.

Lyla Panichas, 78, who lives in Pawtucket, RI, got an iPad three months ago from Rhode Island’s digiAGE program, one of many local technology programs for older adults that started during the pandemic. She is getting help from the University of Rhode Island’s Cyber-Seniors program, which plans to offer digital training to 200 digiAGE participants in communities hardest hit by COVID-19 by the end of this year.

“The first time my tutor called me, I mean, the kids rattle things off so fast. I said, ‘Wait a minute. You have a little old lady here. Let me keep up with you,’” Panichas said. “I couldn’t keep up and I ended up crying.”

Panichas persisted, however, and when her tutor called again the next week she began “being able to grasp things.” Now, she plays games online, streams movies and has Zoom get-togethers with her son in Arizona and her sister in Virginia. “It’s kind of lifted my fears of being isolated,” she told me.

OATS (Older Adults Technology Services) is set to expand the reach of its digital literacy programs significantly after a recent affiliation with AARP. It runs a national hotline for people seeking technical support, 1-920-666-1959, and operates Senior Planet technology training centers in six cities (New York; Denver; Rockville, MD; Plattsburgh, NY; San Antonio, TX; and Palo Alto, CA). All in-person classes converted to digital programming once the pandemic closed down much of the country.

Germaine St. John, 86, a former mayor of Laramie, WY, found an online community of seniors and made dear friends after signing up with Senior Planet Colorado during the pandemic. “I have a great support system here in Laramie, but I was very cautious about going out because I was in the over-80 group,” she told me. “I don’t know what I would have done without these activities.”

Older adults anywhere in the country can take Senior Planet virtual classes for free. (A weekly schedule is available.) Through its AARP partnership, OATS is offering another set of popular classes at AARP’s Virtual Community Center. Tens of thousands of older adults now participate.

For those with low incomes, a federal program is temporarily offering discounts on devices and internet service. 

Aging Connected, another new OATS initiative, is focusing on bringing one million older adults online by the end of 2022.

An immediate priority is to educate older adults about the government’s new $3.2 billion Emergency Broadband Benefit for low-income individuals, which was funded by a coronavirus relief package and became available last month. That short-term program provides $50 monthly discounts on high-speed internet services and a one-time discount of up to $100 for the purchase of a computer or tablet. But the benefit isn’t automatic. People must apply to get funding.

“We are calling on anybody over the age of 50 to try the internet and learn what the value can be,” said Thomas Kamber, OATS’ executive director. Nearly twenty-two million seniors don’t have access to high-speed internet services, largely because these services are unaffordable or unavailable, according to a January report cosponsored by OATS and the Humana Foundation, its Aging Connected partner.

Other new ventures are also helping older adults with technology. Candoo Tech, which launched in February 2019, works with seniors directly in 32 states as well as organizations such as libraries, senior centers and retirement centers.

For various fees, Candoo Tech provides technology training by phone or virtually, as-needed support from “tech concierges,” advice about what technology to buy, and help preparing devices for out-of-the-box use.

“You can give an older adult a device, access to the internet and amazing content, but if they don’t have someone showing them what to do, it’s going to sit there unused,” said Liz Hamburg, Candoo’s president and chief executive.

GetSetUp’s model relies on older adults to teach skills to their peers in small, interactive classes. It started in February 2020 with a focus on tech training, realizing that “fear of technology” was preventing older adults from exploring “a whole world of experiences online,” said Neil Dsouza, founder and chief executive.

For older adults who’ve never used digital devices, retired teachers serve as tech counselors over the phone. “Someone can call in [1-888-559-1614] and we’ll walk them through the whole process of downloading an app, usually Zoom, and taking our classes,” Dsouza said. GetSetUp is offering about 80 hours of virtual technology instruction each week.

For more information about tech training for older adults in your area, contact your local library, senior center, department on aging or Area Agency on Aging. Also, each state has a National Assistive Technology Act training center for older adults and people with disabilities. These centers let people borrow devices and offer advice about financial assistance. Some started collecting and distributing used smartphones, tablets and computers during the pandemic.

For information about a program in your area, go to https://www.at3center.net/

What Happens When a Geriatrician Becomes a Caregiver?

She learns a great deal—and not just about how difficult caregiving is

Journalist Judith Graham tells the extraordinary story of a geriatrician who had to become a caregiver twice over—for her husband and then her mother—in the midst of the pandemic. Graham is a contributing columnist for Kaiser Health News (KHN), and her article was posted on the KHN website on May 18, 2021. It also ran on the Washington Post.  

The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.

This has been a year like none other for Rebecca Elon, MD, who has dedicated her professional life to helping older adults.

It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.

Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally—something she understood only abstractly previously as a geriatrician.

And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.

All these experiences have been “a gift, in a way: they’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.

Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long term care. “I don’t think we, as a nation, are going to make needed improvements [in long term care] until we take responsibility for our aging mothers and fathers—and do so with love and respect,” she told me.

[Elon is] an extraordinary advocate for elders and families.

—Kris Kuhn, MD 

Elon has been acutely aware of prejudice against older adults—and determined to overcome it—since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”

Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the United States. “She’s an extraordinary advocate for elders and families,” said Kris Kuhn, MD, a retired geriatrician and longtime friend.

In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.

Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, William Henry Adler III, MD, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.

Eventually, however, Adler’s decline accelerated, and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, MD, house. “He became a prisoner in our upstairs bedroom,” Elon said.

By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.

In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.

It was time to leave the East Coast behind and be closer to family.

“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”

Meanwhile, another crisis was brewing. In Kankakee, IL, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade, and Davis, who has dementia, required significant assistance.

Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.

By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.

“I finally had help,” she told me. “It was like night and day.”

Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.

“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.

Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.

I thought, ‘Oh, my God, is this what we ask families to deal with?’

–Rebecca Elon, MD

For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.

“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”

Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.

That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”

“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, TX, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”

And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly as Elon works, and she and her mother spend time together.

“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”

Why Technology Matters So Much for Older People during a Pandemic

While technology ‘haves’ cope online, vulnerable ‘have-nots’ struggle

Access to technology can make a huge difference to vulnerable elders isolated by COVID-19. Many don’t have access. Judith Graham explains why and explores creative solutions in this article written for Kaiser Health News (KHN). Graham’s piece was posted on the KHN website on July 24, 2020, and also ran on CNN. 

Family gatherings on Zoom and FaceTime. Online orders from grocery stores and pharmacies. Telehealth appointments with physicians.

These have been lifesavers for many older adults staying at home during the coronavirus pandemic. But an unprecedented shift to virtual interactions has a downside: large numbers of seniors are unable to participate.

Among them are older adults with dementia (14 percent of those 71 and older), hearing loss (nearly two-thirds of those 70 and older) and impaired vision (13.5 percent of those 65 and older), who can have a hard time using digital devices and programs designed without their needs in mind. (Think small icons, difficult-to-read typefaces, inadequate captioning, among the hurdles.)

Many older adults with limited financial resources also may not be able to afford devices or the associated internet service fees. (Half of seniors living alone and 23 percent of those in two-person households are unable to afford basic necessities.) Others are not adept at using technology and lack the assistance to learn.

During the pandemic, which has hit older adults especially hard, this divide between technology “haves” and “have-nots” has serious consequences.

Older adults in the “haves” group have more access to virtual social interactions and telehealth services, and more opportunities to secure essential supplies online. Meanwhile, the “have-nots” are at greater risk of social isolation, forgoing medical care and being without food or other necessary items.

A Medicare Advantage plan found that about a third of its most vulnerable members couldn’t manage a telehealth appointment because they didn’t have the technology.

Dr. Charlotte Yeh, chief medical officer for AARP Services, observed difficulties associated with technology this year when trying to remotely teach her 92-year-old father how to use an iPhone. She lives in Boston; her father lives in Pittsburgh.

Yeh’s mother had always handled communication for the couple, but she was in a nursing home after being hospitalized for pneumonia. Because of the pandemic, the home had closed to visitors. To talk to her and other family members, Yeh’s father had to resort to technology.

But various impairments got in the way: Yeh’s father is blind in one eye, with severe hearing loss and a cochlear implant, and he had trouble hearing conversations over the iPhone. And it was more difficult than Yeh expected to find an easy-to-use iPhone app that accurately translates speech into captions.

Often, family members would try to arrange Zoom meetings. For these, Yeh’s father used a computer but still had problems because he could not read the very small captions on Zoom. A tech-savvy granddaughter solved that problem by connecting a tablet with a separate transcription program.

When Yeh’s mother, who was 90, came home in early April, physicians treating her for metastatic lung cancer wanted to arrange telehealth visits. But this could not occur via cell phone (the screen was too small) or her computer (too hard to move it around). Physicians could examine lesions around the older woman’s mouth only when a tablet was held at just the right angle, with a phone’s flashlight aimed at it for extra light.

“It was like a three-ring circus,” Yeh said. Her family had the resources needed to solve these problems; many do not, she noted. Yeh’s mother passed away in July; her father is now living alone, making him more dependent on technology than ever.

When SCAN Health Plan, a Medicare Advantage plan with 215,000 members in California, surveyed its most vulnerable members after the pandemic hit, it discovered that about one-third did not have access to the technology needed for a telehealth appointment. The Centers for Medicare & Medicaid Services had expanded the use of telehealth in March.

Other barriers also stood in the way of serving SCAN’s members remotely. Many people needed translation services, which are difficult to arrange for telehealth visits. “We realized language barriers are a big thing,” said Eve Gelb, SCAN’s senior vice president of health care services.

One alternative is a tablet already loaded with apps designed for adults 75 and older.

Nearly 40 percent of the plan’s members have vision issues that interfere with their ability to use digital devices; 28 percent have a clinically significant hearing impairment.

“We need to target interventions to help these people,” Gelb said. SCAN is considering sending community health workers into the homes of vulnerable members to help them conduct telehealth visits. Also, it may give members easy-to-use devices, with essential functions already set up, to keep at home, Gelb said.

Landmark Health serves a highly vulnerable group of 42,000 people in 14 states, bringing services into patients’ homes. Its average patient is nearly 80 years old, with eight medical conditions. After the first few weeks of the pandemic, Landmark halted in-person visits to homes because personal protective equipment, or PPE, was in short supply.

Instead, Landmark tried to deliver care remotely. It soon discovered that fewer than 25 percent of patients had appropriate technology and knew how to use it, according to Nick Loporcaro, the chief executive officer. “Telehealth is not the panacea, especially for this population,” he said.

Landmark plans to experiment with what he calls “facilitated telehealth”: nonmedical staff members bringing devices to patients’ homes and managing telehealth visits. (It now has enough PPE to make this possible.) And it too is looking at technology that it can give to members.

One alternative gaining attention is GrandPad, a tablet loaded with senior-friendly apps designed for adults 75 and older. In July, the National PACE Association, whose members run programs providing comprehensive services to frail seniors who live at home, announced a partnership with GrandPad to encourage adoption of this technology.

“Everyone is scrambling to move to this new remote-care model and looking for options,” said Scott Lien, the company’s co-founder and chief executive officer.

Nursing homes, assisted living centers and senior communities need to install communitywide Wi-Fi services.

PACE Southeast Michigan purchased 125 GrandPads for highly vulnerable members after closing five centers in March where seniors receive services. The devices have been “remarkably successful” in facilitating video-streamed social and telehealth interactions and allowing nurses and social workers to address emerging needs, said Roger Anderson, senior director of operational support and innovation.

Another alternative is technology from iN2L (an acronym for It’s Never Too Late), a company that specializes in serving people with dementia. In Florida, under a new program sponsored by the state’s Department of Elder Affairs, iN2L tablets loaded with dementia-specific content have been distributed to 300 nursing homes and assisted living centers.

The goal is to help seniors with cognitive impairment connect virtually with friends and family and engage in online activities that ease social isolation, said Sam Fazio, senior director of quality care and psychosocial research at the Alzheimer’s Association, a partner in the effort. But because of budget constraints, only two tablets are being sent to each long term care community.

Families report it can be difficult to schedule adequate time with loved ones when only a few devices are available. This happened to Maitely Weismann’s 77-year-old mother after she moved into a short-staffed, Los Angeles, memory-care facility in March. After seeing how hard it was to connect, Weismann, who lives in Los Angeles, gave her mother an iPad and hired an aide to ensure that mother and daughter were able to talk each night.

Without the aide’s assistance, Weismann’s mother would end up accidentally pausing the video or turning off the device. “She probably wanted to reach out and touch me, and when she touched the screen it would go blank and she’d panic,” Weismann said.

What’s needed going forward? Laurie Orlov, founder of the blog Aging in Place Technology Watch, said nursing homes, assisted living centers and senior communities need to install communitywide Wi-Fi services—something that many lack.

“We need to enable Zoom get-togethers. We need the ability to put voice technology in individual rooms, so people can access Amazon Alexa or Google products,” she said. “We need more group activities that enable multiple residents to communicate with each other virtually. And we need vendors to bundle connectivity, devices, training and service in packages designed for older adults.”

 

His Medical Crisis Took Us by Surprise

Suddenly my father-in-law was hospitalized, and we had put off planning

Journalist Judith Graham reveals what happens when problems that have always been hypothetical suddenly become real and need immediate solutions. Graham writes the Navigating Aging column for Kaiser Health News (KHN). Her article was posted on the KHN website on August 20, 2020, and also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.

Earlier this month, my husband picked up the phone and learned his 92-year-old father had been taken to the hospital that morning, feeling sick and short of breath.

We were nearly 2,000 miles away, on a vacation in the mountains of southern Colorado.

No, it wasn’t COVID-19. My father-in-law, Mel, who has diabetes, high blood pressure and kidney disease, was suffering from fluid buildup in his legs and around his lungs, and excruciating knee pain. Intravenous medications and steroid injections were administered, and he responded well.

Doctors monitored Mel carefully, adjusted his medications and recommended a few weeks of home health care after eight days in the hospital.

In other words, this was not a life-threatening emergency. Yet we realized how poorly prepared we were for a real crisis, should one arise. We needed a plan.

Why didn’t we have one already? The usual reasons: denial, avoidance and wishful thinking. It was easier to imagine that Mel would be all right until it became clear that we couldn’t take that for granted.

Although I routinely advise readers about preparing for changes in their health, I didn’t want to be a know-it-all with my husband’s family. Their assumption seemed to be, “We’ll deal with whatever comes up when that happens.”

Now, eyes wide open, we got organized.

Some background: Mel lives in a well-run continuing care retirement community in upstate New York, in the independent living section. His three sons all live at a distance: one out West, one overseas and one a few hours away.

Hiring a care manager. Last year, as Mel’s kidney function declined, I suggested we hire a geriatric care manager who could look in on him regularly. After a few visits, Mel let her go. Her services were too expensive, he complained. In truth, we understood, he didn’t want someone interfering in his affairs.

My husband respects his father’s autonomy and didn’t press the point.

So when Mel went to the hospital a few weeks ago, he was alone, with no one to turn to for assistance.

This was especially problematic because Mel has hearing loss, and it is almost impossible to talk with him by phone. “How are you, Dad?” my husband yelled on twice-a-day calls to check on his father in the hospital. “What?” Mel replied querulously. This was repeated a few times, with mounting frustration and no useful information exchanged.

Now a care manager who could serve as our eyes and ears on the ground was necessary, not optional, and we hired back the professional we’d already found.

Finding companion care. What kind of assistance was Mel going to need when he left the hospital, deconditioned and weaker than when he went in?

When we spoke with the physician overseeing Mel’s care in the hospital, he suggested that “companion care” for at least a few weeks would be a good idea. Mel needed someone to help him up out of the chair, stay at his side while he walked to the bathroom and bring him a glass of water, among other tasks. (Also, we realized, we needed to arrange for meals to be delivered to Mel and for someone from his senior community to buy groceries for him—a service they’d started during the pandemic.)

An excellent organization that works with older adults in Mel’s area supplied me with a list of 21 agencies that provide these kinds of services—a dizzying array of choices.

Fortunately, the senior community where Mel lives recommended an agency that often works with its residents. We hired 24/7 care for several days after Mel left the hospital with the understanding that we’d continue services if necessary. Now, this agency is on our list of essential resources.

Understanding the options. Mel’s senior community incorporates assisted living and a nursing home for residents who need short-term rehabilitation services or longer-term, round-the-clock care.

But it was clear Mel wanted to go home after being in the hospital instead of going to that rehab. Medicare would pay for a few weeks of visits from nurses and physical and occupational therapists. Would that be enough to set him on the road to recovery? We had no idea.

If Mel couldn’t return to his previous level of functioning after returning home, he might need to transition to assisted living, where he could receive more medical oversight and assistance. How would this work? We didn’t know and asked the geriatric care manager to find out.

Getting paperwork in order. Years ago, Mel assigned power of attorney for his health care decisions and financial and legal affairs to my husband. So long as Mel can manage on his own, he makes his own decisions: The legal papers were a backup arrangement.

But Mel hadn’t prepared a document naming all three sons as his personal representatives under the Health Insurance Portability and Accountability Act of 1996. This waives privacy concerns and gives them access to his medical information. It went on our to-do list.

The brothers also didn’t have a complete list of Mel’s doctors, the medications he was on and why he was taking them. Another item for our list, especially important since Mel left the hospital with prescriptions for 14 medications, several of them new. While he’d always managed on his own before, in his post-hospital fog it was clear he was nervous about managing this complicated regimen.

Understanding the prognosis. Before Mel’s hospitalization, we knew his kidney function was worsening. But what lay ahead? Was dialysis even an option for a 92-year-old in this time of COVID-19?

Who was best prepared to help us understand Mel’s prognosis and the big picture?

I’ve written for years about geriatricians’ comprehensive approach to the health of older adults. It turns out there’s a top-notch group of geriatricians affiliated with the hospital where Mel was being treated.

After several calls, I reached one who agreed to see Mel after he was released from the hospital. Now, we have another new team member who can help us understand Mel’s health trajectory and issues that might arise going forward.

Having the conversation. What has yet to happen is the conversation that my husband hasn’t wanted to have. “Dad, if your health takes a turn for the worse again, what do you want? What’s most important to you? What does quality of life mean to you? And what can we do to help?”

With Mel’s hearing problems, doing this over the phone won’t do.

My husband would have to fly cross-country and, ideally, meet his New York brother at Mel’s place for a conversation of this kind. Before that happens, the brothers should talk among themselves. What’s their understanding of what Mel wants? Are they on the same page?

Also, no one has discussed financial arrangements.

Each time we explain to Mel one of the new services we’ve arranged, his first question is “What’s the cost?” His impulse is to guard his cherished savings and not to spend. My husband tells him he shouldn’t worry, but this too is a conversation that has to happen.

Being prepared. Professionally, I know a lot about the kinds of problems families encounter when an older relative becomes ill. Personally, I’ve learned that families don’t really understand what’s involved until they go through it on their own.

Now, Mel has a new set of supports in place that should help him weather the period ahead. And my husband is keenly aware that planning doesn’t stop here. He’ll be attending to his father far more carefully going forward.

 

Older COVID Patients Battle ‘Brain Fog’ 

For those who have been critically ill, a full recovery can take months

Most older people who develop COVID-19 survive it, but release from the hospital is often followed by a long and difficult recuperation. Journalist Judith Graham explains what that’s like and what needs to be done to help them. She wrote her article for Kaiser Health News, and it was posted on the KHN website on Oct. 20, 2020. It also ran on CNN

“Lord, give me back my memory.”

For months, as Marilyn Walters has struggled to recover from COVID-19, she has repeated this prayer day and night.

Like other older adults who’ve become critically ill from the coronavirus, Walters, 65, describes what she calls “brain fog”—difficulty putting thoughts together, problems with concentration, the inability to remember what happened a short time before.

This sudden, cognitive dysfunction is a common concern for seniors who’ve survived a serious bout of COVID-19.

“Many older patients are having trouble organizing themselves and planning what they need to do to get through the day,” said Zijian Chen, MD, medical director of the Center for Post-COVID Care at Mount Sinai Health System in New York City. “They’re reporting that they’ve become more and more forgetful.”

Other challenges abound: overcoming muscle and nerve damage, improving breathing, adapting to new impairments, regaining strength and stamina and coping with the emotional toll of unexpected illness.

Most seniors survive COVID-19 and will encounter these concerns to varying degrees. Even among the age group at greatet risk—people 85 and older—just 28 percent of those with confirmed cases end up dying, according to data from the Centers for Disease Control and Prevention. (Because of gaps in testing, the actual death rate may be lower.)

A year after being critically ill with COVID, at least half of older patients will not have fully recovered.

Walters, who lives in Indianapolis, IN, spent almost three weeks in March and April heavily sedated, on a ventilator, fighting for her life in intensive care. Today, she said, “I still get tired real easy and I can’t breathe sometimes. If I’m walking, sometimes my legs get wobbly and my arms get like jelly.”

“Emotionally, it’s been hard because I’ve always been able to do for myself, and I can’t do that as I like. I’ve been really nervous and jittery,” Walters said.

Younger adults who’ve survived a serious course of COVID-19 experience similar issues, but older adults tend to have “more severe symptoms, and more limitations in terms of what they can do,” Chen said.

“Recovery will be on the order of months and years, not days or weeks,” said E. Wesley Ely, MD, co-director of the Critical Illness, Brain Dysfunction and Survivorship Center at Vanderbilt University Medical Center. Most likely, he speculated, a year after fighting the disease at least half of the critically ill older patients will not have fully recovered.

The aftereffects of delirium—an acute, sudden change of consciousness and mental acuity—can complicate recovery from COVID-19. Seniors hospitalized for serious illness are susceptible to the often-unrecognized condition when they’re immobilized for a long time, isolated from family and friends and given sedatives to ease agitation or narcotics for pain, among other contributing factors.

In older adults, delirium is associated with a heightened risk of losing independence, developing dementia and dying. It can manifest as acute confusion and agitation or as uncharacteristic unresponsiveness and lethargy.

“What we’re seeing with COVID-19 and older adults are rates of delirium in the 70 percent to 80 percent range,” said Babar Khan, MD, associate director of Indiana University’s Center for Aging Research at the Regenstrief Institute, and one of Walters’ physicians.

Family members should insist on rehab therapy after a patient leaves the hospital and returns home. 

Gordon Quinn, 77, a Chicago documentary filmmaker, believes he contracted COVID-19 at a conference in Australia in early March. At Northwestern Memorial Hospital, he was put on a ventilator twice in the ICU, for a total of nearly two weeks, and remembers having “a lot of hallucinations”—a symptom of delirium.

“I remember vividly believing I was in purgatory. I was paralyzed—I couldn’t move. I could hear snatches of TV—reruns of Law & Order: Special Victims Unit—and I asked myself, ‘Is this my life for eternity?’” Quinn said.

Given the extent of delirium and mounting evidence of neurological damage from COVID-19, Khan said he expects to see “an increased prevalence of ICU-acquired, cognitive impairment in older COVID patients.”

Ely agrees. “These patients will urgently need to work on recovery,” he said. Family members should insist on securing rehabilitation services—physical therapy, occupational therapy, speech therapy, cognitive rehabilitation—after the patient leaves the hospital and returns home, he advised.

“Even at my age, people can get incredible benefit from rehab,” said Quinn, who spent nearly two weeks at Chicago’s Shirley Ryan AbilityLab, a rehabilitation hospital, before returning home and getting several weeks of home-based therapy. Today, he’s able to walk nearly 2 miles and has returned to work, feeling almost back to normal.

James Talaganis, 72, of Indian Head Park, IL, also benefited from rehab at Shirley Ryan AbilityLab after spending nearly four months in various hospitals beginning in early May.

Talaganis had a complicated case of COVID-19: his kidneys failed, and he was put on dialysis. He experienced cardiac arrest and was in a coma for almost 58 days while on a ventilator. He had intestinal bleeding, requiring multiple blood transfusions, and was found to have crystallization and fibrosis in his lungs.

When Talaganis began his rehab on Aug. 22, he said, “my whole body, my muscles were atrophied. I couldn’t get out of bed or go to the toilet. I was getting fed through a tube. I couldn’t eat solid foods.”

In early October, after getting hours of therapy each day, Talaganis was able to walk 660 feet in six minutes and eat whatever he wanted. “My recovery—it’s a miracle. Every day I feel better,” he said.

To recover from a critical illness, sometimes what patients need most is human connections. 

Unfortunately, rehabilitation needs for most older adults are often overlooked. Notably, a recent study found that one-third of critically ill older adults who survive a stay in the ICU did not receive rehab services at home after hospital discharge.

“Seniors who live in more rural areas or outside bigger cities where major hospital systems are providing cutting-edge services are at significant risk of losing out on this potentially restorative care,” said Sean Smith, MD, an associate professor of physical medicine and rehabilitation at the University of Michigan.

Sometimes what’s most needed for recovery from critical illness is human connection. That was true for Tom and Virginia Stevens of Nashville, TN, in their late 80s, who were both hospitalized with COVID-19 in early August.

Ely, one of their physicians, found them in separate hospital rooms, frightened and miserable. “I’m worried about my husband,” he said Virginia told him. “Where am I? What is happening? Where is my wife?” the doctor said Tom asked, before crying out, “I have to get out of here.”

Ely and another physician taking care of the couple agreed. Being isolated from each other was dangerous for this couple, married for 66 years. They needed to be put in a room together.

When the doctor walked into their new room the next day, he said, “it was a night-and-day difference.” The couple was sipping coffee, eating and laughing on beds that had been pushed together.

“They both got better from that point on. I know that was because of the loving touch, being together,” Ely said.

That doesn’t mean recovery has been easy. Virginia and Tom still struggle with confusion, fatigue, weakness and anxiety after their two-week stay in the hospital, followed by two weeks in inpatient rehabilitation. Now, they’re in a new assisted living residence, which is allowing outdoor visits with their family.

“Doctors have told us it will take a long time and they may never get back to where they were before COVID,” said their daughter, Karen Kreager, also of Nashville. “But that’s OK. I’m just so grateful that they came through this and we get to spend more time with them.”

 

What Will Later Life Be Like Beyond COVID-19?

Older people anticipate changes and challenges ahead

At a time when the future seems unknowable—except that the “new normal” may not be much like the past—journalist Judith Graham talked to almost a dozen older people about their own hopes and fears. Her article was posted on the Kaiser Health News (KHN) website on July 7, 2020. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.

Months into the coronavirus pandemic, older adults are having a hard time envisioning their “new normal.”

Many remain fearful of catching the virus and plan to follow strict precautions—social distancing, wearing masks and gloves, limiting excursions to public places—for the indefinite future.

Mortality is no longer an abstraction for those who have seen friends and relatives die of COVID-19. Death has an immediate presence as never before.

Many people are grieving the loss of their old lives and would love nothing better than to pick up where they left off. Others are convinced their lives will never be the same.

“We’re at the cusp of a new world,” said Harry Hutson, 72, an organizational consultant and executive coach who lives in Baltimore.

He’s among nearly a dozen older adults who discussed the “new normal” in lengthy conversations. All acknowledged their vulnerability as states across the country lifted stay-at-home orders. (Adults 65 and older are more likely to become critically ill if infected with the coronavirus.) Here’s some of what they said:

Willetha, 67, and Harold, 68, Barnette, of Durham, NC. The Barnettes are an unusual couple: they divorced in 1995 but began living together again in 2014 when both Willetha and her elderly mother became ill, and Harold returned to help.

For Willetha, who has Crohn’s disease and is immunocompromised, the “new normal” is characterized by vigilance—masks, gloves, disinfectants, social distancing, working remotely (she’s a development officer at a school).

“I’m not going to be comfortable freely moving around this world until they’re able to do reliable antibody testing and there is a vaccine,” she said. “Right now, I think we all have to learn to live smaller.”

I’m preparing myself for a different social order.

—Harold Barnette

Harold believes that self-reliance and local support networks are more important than ever. “To me, the pandemic reveals troubling things about the state of institutions in our society. The elder care system is rotten and the health care system full of neglect,” he said.

“I’m preparing myself for a different social order. I’m thinking that will be built on relationships with family and people near to us and we’ll all be helping each other out more.”

Patricia Griffin, 80, of Oxford, PA. Griffin is a retired microbiologist who lives alone in a continuing care community and loves to travel. In March, as the coronavirus pandemic gathered steam, she was due to take a trip to the Amazon, which was canceled.

I’m leaning toward being cautious but not being completely a prisoner.

—Patricia Griffin

“I envision conditions for seniors being restrictive until we have a vaccine,” Griffin said. “That makes me angry because I don’t have that many years left. And I would like to do the things I want to do. At the moment, I’m leaning toward being cautious but not being completely a prisoner.”

A big frustration for Griffin is the lack of clear guidance for healthy older adults like her who do not have underlying medical conditions. “All we see are statistics that lump all of us together, the healthy with those that have multiple issues,” she said. “I’m wondering what my odds of getting really sick from this virus are.”

Wilma Jenkins, 82, of South Fulton, GA. Jenkins, who has coped with depression most of her life and describes herself as an introvert, lives alone in a small house just outside Atlanta.

“I confess I’m going to be afraid for a while,” she said.

During the pandemic, her three adult children and grandchildren have created a new tradition: Zoom meetings every Sunday afternoon. Previously, the entire family got together once a year, at Thanksgiving. “It helps me a lot, and I think it will last because we have so much fun,” Jenkins said.

Before her life ground to a halt, Jenkins regularly gave presentations at senior centers across Atlanta on what it’s like to grow old. “My work is helping little old people like me,” she said, “and when I can get out again, I’ll be reminding them that we have reached a point when we can wear the crown of age and we should be doing that proudly.”

Marian and Ed Hollingsworth, 66 and 72, of La Mesa, CA. Ed has a rare gastrointestinal cancer and is enrolled in a clinical trial of a new drug.

“My vision of the future is somewhat limited, given my age and my prognosis,” he said. “There’s a constant fear and uncertainty. I don’t see that changing anytime soon. We’ll be in the house a lot, cooking a lot, watching a lot of Netflix.”

“I’m looking at least a year or two of taking strong precautions,” said Marian, a patient-safety advocate.

“I always was the person who was active and doing for others. Now I’m the one at home having to ask for help, and it feels so foreign,” she said. Her most immediate heartache: “We don’t know when we’ll see our [four] kids again.”

Richard Chady, 75, of Chapel Hill, NC. Chady, a former journalist and public relations professional, lives in a retirement community and participates in the North Carolina Coalition on Aging.

“This pandemic has given me a greater appreciation of how precious family and friends are,” he said. “I think it will cause older people to examine their lives and their purpose a little more carefully.”

Chady is optimistic about the future. “I’ve been involved in progressive causes for a long time, and I think we have a great opportunity now. With all that’s happened, there’s more acceptance of the idea that we need to do more to improve people’s lives.”

Edward Mosley, 62, of Atlanta. Mosley lives alone in Big Bethel Village, an affordable senior housing community. Disabled by serious heart disease, he relies on Supplemental Security Income and Medicaid. In the past year, he has had multiple hospitalizations.

“The pandemic, it affected me because they canceled my doctors’ appointments, and I was in a bad way,” said Mosley, who had a pacemaker implanted in his chest before COVID-19 emerged. “But I’m doing better now. I can walk with a cane, though not very far.”

The hardest thing for Mosley is not being able to mingle with other people “because you don’t know where they’ve been or who they’ve been with. You feel like you’re in solitary confinement.”

Vicki Ellner, 68, of Glenwood Landing, NY. Ellner ran [the] Senior Umbrella Network of Brooklyn for 20 years. Today she works as a consultant for an elder care attorney on Long Island.

Before the coronavirus upended life in and around New York City, Ellner and the attorney were planning to launch an initiative aimed at older women. Now, they’ve broadened it to include older men and address issues raised during the pandemic. The theme: “You’re not done yet.”

Ellner explains it this way: “Maybe you were on a path and had a vision of your life in mind. Then all of a sudden you have these challenges. Maybe you lost your job, or maybe things have happened in your family. What we want to help people understand is you’re not done yet. You still have the ability to redirect your life.”

In her personal life, Ellner, who lives with a “significant other,” is determined to keep fear at bay. “We tell ourselves we’re doing everything we can to stay vital and get through this. We try to turn that into a positive.”

Harry Hutson, 72, of Baltimore. Hutson, an organizational consultant and executive coach, is married and has five grown children. He believes “an enormous change in lifestyle” is occurring because of the pandemic.

“We’re all more careful, but we’re also more connected,” he said. “Older friends are coming out of the woodwork. Everyone is Zooming and making calls. People are more open and vulnerable and willing to share than before. We’re all trying to make meaning of this new world.”

“We’re all having a traumatic experience—an experience of collective trauma,” Hutson said. As the future unfolds, “the main thing is self-care and compassion. That’s the way forward for all of us.”

Annis Pratt, 83, of Birmingham, MI. A retired English professor, novelist and environmental activist, Pratt lives alone in a home in suburban Detroit.

“What I’m looking forward to is getting back to interacting with real people. Much of my human contact now is on Zoom, which I consider about 75% of a personal encounter,” she said. “But every day, I make myself go out and talk to someone—like taking a vitamin pill.”

Pratt now has a “do not put me on a ventilator” order in her front hallway, along with a “do not resuscitate” order. “I know it’s very likely that if I get to the point where I have to go to the hospital, I’ll probably die,” she said. “Of course, I’m going to die anyway: I’m 83. But somehow, this pandemic has brought it all home.”

Going forward, Pratt sees two possibilities. “Our moral imaginations will have grown because of what we’ve all gone through, and we will do better. Or nothing will have changed.”

Most of all, she said, “I would like to get my wonderful, wonderful life back.”

Older People Are Having Second Thoughts about Where to Live

From aging in place to assisted living, housing choices look different since the pandemic

In this piece written for Kaiser Health News (KHN), journalist Judith Graham investigates the dilemma older people and their families face as the pandemic calls many housing solutions into question. KHN posted her story on Sept. 18, 2020, and it also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.

Where do we want to live in the years ahead?

Older adults are asking this question anew in light of the ongoing toll of the coronavirus pandemic—disrupted lives, social isolation, mounting deaths. Many are changing their minds.

Some people who planned to move to senior housing are now choosing to live independently rather than communally. Others wonder whether transferring to a setting where they can get more assistance might be the right call.

These decisions, hard enough during ordinary times, are now fraught with uncertainty as the economy falters and COVID-19 deaths climb, including tens of thousands in nursing homes and assisted living centers.

Teresa Ignacio Gonzalvo and her husband, Jaime, both 68, chose to build a house rather than move into a continuing care retirement community when they relocate from Virginia Beach, VA, to Indianapolis, IN, later this year to be closer to their daughters.

Having heard about lockdowns around the country because of the coronavirus, Gonzalvo said, “We’ve realized we’re not ready to lose our independence.”

Alissa Ballot, 64, is planning to leave her 750-square-foot apartment in downtown Chicago and put down roots in a multigenerational cohousing community where neighbors typically share dining and recreation areas and often help one another.

“What I’ve learned during this pandemic is that personal relationships matter most to me, not place,” she said.

Kim Beckman, 64, and her husband, Mike, were ready to give up being homeowners in Victoria, TX, and join a 55-plus community or rent in an independent living apartment building in northern Texas before COVID-19 hit.

Because of the many COVID-19 deaths in nursing homes and assisted living facilities, many elders are nervous about where to live.

Now, they’re considering buying an even bigger home because “if you’re going to be in the house all the time, you might as well be comfortable,” Beckman said.

“Everyone I know is talking about this,” said Wendl Kornfeld, 71, who lives on the Upper West Side of Manhattan. She has temporarily tabled the prospect of moving into a continuing care retirement community being built in the Bronx.

“My husband and I are going to play it by ear; we want to see how things play out” with the pandemic, she said.

In Kornfeld’s circles, people are more committed than ever to staying in their homes or apartments as long as possible—at least at the moment. Their fear: if they move to a senior living community, they might be more likely to encounter a COVID outbreak.

“All of us have heard about the huge number of deaths in senior facilities,” Kornfeld said. But people who stay in their own homes may have trouble finding affordable help there when needed, she acknowledged.

More than 70,000 residents and staff members in nursing homes and assisted living facilities had died of COVID-19 by mid-August, according to the latest count from KFF, (Kaiser Family Foundation). This is an undercount because less than half of states are reporting data for COVID-19 in assisted living. Nor is data reported for people living independently in senior housing. (KHN is an editorially independent program of KFF.)

Nervousness about senior living has spread as a result, and in July, the National Investment Center for Seniors Housing & Care [NIC] reported the lowest occupancy rates since the research organization started tracking data 14 years ago. Occupancy dropped more in assisted living (a 3.2 percent decline from April through June, compared with January through March) than in independent living (a 2.4 percent decline). The organization doesn’t compile data on nursing homes.

In a separate NIC survey of senior housing executives in August, 74 percent said families had voiced concerns about moving in as COVID cases spiked in many parts of the country.

Overcoming Possible Isolation

The potential for social isolation is especially worrisome, as facilities retain restrictions on family visits and on group dining and activities. (While states have started to allow visits outside at nursing homes and assisted living centers, most facilities don’t yet allow visits inside—a situation that will increase frustration when the weather turns cold.)

Beth Burnham Mace, NIC’s chief economist and director of outreach, emphasized that operators have responded aggressively by instituting new safety and sanitation protocols, moving programming online, helping residents procure groceries and other essential supplies and communicating regularly about COVID-19, both on-site and in the community at large, much more regularly.

Mary Kazlusky, 76, resides in independent living at Heron’s Key, a continuing care retirement community in Gig Harbor, Washington, which is doing all this and more with a sister facility, Emerald Heights in Redmond, WA. 

“We all feel safe here,” she said. “Even though we’re strongly advised not to go into each other’s apartments, at least we can see each other in the hall and down in the lobby and down on the decks outside. As far as isolation, you’re isolating here with over 200 people: there’s somebody always around.”

One staff member at Heron’s Key tested positive for COVID-19 in August but has recovered. Twenty residents and staff members tested positive at Emerald Heights. Two residents and one staff member died.

Some families find that, since the pandemic, older relatives have trouble managing on their own. 

Colin Milner, chief executive officer of the International Council on Active Aging, stresses that some communities are doing a better job than others. His organization recently published a report on the future of senior living in light of the pandemic.

It calls on operators to institute a host of changes, including establishing safe visiting areas for families both inside and outside; providing high-speed internet services throughout communities; and ensuring adequate supplies of masks and other forms of personal protective equipment for residents and staff, among other recommendations.

Some families now wish they’d arranged for older relatives to receive care in a more structured environment before the pandemic started. They’re finding that older relatives living independently, especially those who are frail or have mild cognitive impairments, are having difficulty managing on their own.

“I’m hearing from a lot of people—mostly older daughters—that we waited too long to move Mom or Dad, we had our head in the sand, can you help us find a place for them,” said Allie Mazza, who owns Brandywine Concierge Senior Services in Kennett Square, PA. 

While many operators instituted move-in moratoriums early in the pandemic, most now allow new residents as long as they test negative for COVID-19. Quarantines of up to two weeks are also required before people can circulate in the community.

Many older adults, however, simply don’t have the financial means to make a move. More than half of middle-income seniors—nearly 8 million older adults—can’t afford independent living or assisted living communities, according to a study published last year. And more than 7 million seniors are poor, according to the federal Supplemental Poverty Measure, which includes out-of-pocket medical expenses and other drains on cash reserves.

Questions to Ask

For those able to consider senior housing, experts suggest you ask several questions:

  • How is the facility communicating with residents and families? Has it had a COVID outbreak? Is it disclosing COVID cases and deaths? Is it sharing the latest guidance from federal, state and local public health authorities?
  • What protocols have been instituted to ensure safety? “I’d want to know: Do they have a plan in place for disasters—not just the pandemic but also floods, fires, hurricanes, blizzards?” Milner said. “And beyond a plan, do they have supplies in place?”
  • How does the community engage residents? Is online programming—exercise classes, lectures, interest group meetings—available? Are one-on-one interactions with staffers possible? Are staffers arranging online interactions via FaceTime or Zoom with family? Are family visits allowed? “Social engagement and stimulation are more important than ever,” said David Schless, president of the American Seniors Housing Association.
  • What’s the company’s financial status and occupancy rate? “Properties with occupancy rates of 90 percent or higher are going to be able to withstand the pressures of COVID-19 significantly more than properties with occupancy below 80 percent, in my opinion,” said Mace of the National Investment Center for Seniors Housing & Care. Higher occupancy means more revenues, which allows institutions to better afford extra expenses associated with the pandemic.

“Transparency is very important,” Schless said.

 

 

COVID-19 Is Damaging Bereaved Families

The trauma and the grief could last for years

Losing someone you love is hard enough, but losing them to COVID can compound your grief. Journalist Judith Graham describes what’s happening as the pandemic wears on and where help can be found. Kaiser Health News posted her article on August 12, 2020. The story also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.  

Every day, the nation is reminded of COVID-19’s ongoing impact as new death counts are published. What is not well documented is the toll on family members.

New research suggests the damage is enormous. For every person who dies of COVID-19, nine close family members are affected, researchers estimate, based on complex demographic calculations and data about the coronavirus.

Many survivors will be shaken by the circumstances under which loved ones pass away—rapid declines, sudden deaths and an inability to be there at the end—and worrisome ripple effects may linger for years, researchers warn.

If 190,000 Americans die from COVID complications, . . . some models suggest, 1.7 million Americans will be grieving close family members, according to the study. Most likely to perish are grandparents, followed by parents, siblings, spouses and children.

“There’s a narrative out there that COVID-19 affects mostly older adults,” said Ashton Verdery, a coauthor of the study and a professor of sociology and demography at Pennsylvania State University. “Our results highlight that these are not completely socially isolated people that no one cares about. They are integrally connected with their families, and their deaths will have a broad reach.”

Because of family structures, Black families will lose slightly more close family members than white families, aggravating the pandemic’s disproportionate impact on African American communities. (Verdery’s previous research modeled kinship structures for the US population, dating to 1880 and extending to 2060.)

The potential consequences of these losses are deeply concerning, with many families losing important sources of financial, social and caregiving support. “The vast scale of COVID-19 bereavement has the potential to lower educational achievement among youth, disrupt marriages, and lead to poorer physical and mental health across all age groups,” Verdery and his coauthors observe in their paper.

Not being there in your love one’s time of need, not being able to say goodbye, make prolonged grief and post-traumatic stress more likely. 

Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medicine in New York City, sounds a similar alarm, especially about the psychological impact of the pandemic, in a new paper on bereavement.

“Bereaved individuals have become the secondary victims of COVID-19, reporting severe symptoms of traumatic stress, including helplessness, horror, anxiety, sadness, anger, guilt, and regret, all of which magnify their grief,” she and coauthors from Memorial Sloan Kettering Cancer Center in New York noted.

In a phone conversation, Prigerson predicted that people experiencing bereavement will suffer worse outcomes because of lockdowns and social isolation during the pandemic. She warned that older adults are especially vulnerable.

“Not being there in a loved one’s time of need, not being able to communicate with family members in a natural way, not being able to say goodbye, not participating in normal rituals—all this makes bereavement more difficult and prolonged grief disorder and post-traumatic stress more likely,” she noted.

Organizations that offer bereavement care are seeing this unfold as they expand services to meet escalating needs.

Typically, 5 percent to 10 percent of bereaved family members have a “trauma response,” but that has “increased exponentially—approaching the 40 percent range—because we’re living in a crisis,” said Yelena Zatulovsky, vice president of patient experience at Seasons Hospice & Palliative Care, the nation’s fifth-largest hospice provider.

Since March, Seasons has doubled the number of grief support groups it offers to 29, hosted on virtual platforms, most of them weekly. All are free and open to community members, not just families whose loved ones received care from Seasons. (To find a virtual group in your time zone, call 1-855-812-1136, Season’s 24/7 call center.)

Besides losing family members and friends, people are losing jobs and any sense of normalcy and safety.

“We’re noticing that grief reactions are far more intense and challenging,” Zatulovsky said, noting that requests for individual and family counseling have also risen.

Medicare requires hospices to offer bereavement services to family members for up to 13 months after a client’s death. Many hospices expanded these services to community members before the pandemic, and Edo Banach, president and CEO of the National Hospice and Palliative Care Organization, hopes that trend continues.

“It’s not just the people who die on hospice and their families who need bereavement support at this time; it’s entire communities,” he said. “We have a responsibility to do even more than what we normally do.”

In New York City, the center of the pandemic in its early months, the Jewish Board is training school administrators, teachers, counselors and other clinicians to recognize signs of grief and bereavement and provide assistance. The health and human services organization serves New Yorkers regardless of religious affiliation.

“There is a collective grief experience that we are all experiencing, and we’re seeing the need go through the roof,” said Marilyn Jacob, a senior director who oversees the organization’s bereavement services, which now include two support groups for people who have lost someone to COVID-19.

“There’s so much loss now, on so many different levels, that even very seasoned therapists are saying, ‘I don’t really know how to do this,’” Jacob said. In addition to losing family members, people are losing jobs, friends, routines, social interactions and a sense of normalcy and safety.

For many people, these losses are sudden and unexpected, which can complicate grief, said Patti Anewalt, director of Pathways Center for Grief & Loss in Lancaster, PA, affiliated with the state’s largest not-for-profit hospice. The center recently created a four-week group on sudden loss to address its unique challenges.

Coping with grief, especially when it is complicated by social isolation and trauma, takes time. Support groups can help. 

The day before Julie Cheng’s 88-year-old mother was rushed to the hospital in early July, she had been singing songs with Cheng’s sister over the phone at her Irvine, CA, nursing home. The next morning, a nurse reported that the older woman had a fever and was wheezing badly. At the hospital, COVID-19 was diagnosed and convalescent plasma therapy tried. Within two weeks, after suffering a series of strokes, Cheng’s mother died.

Since then, Cheng has mentally replayed the family’s decision not to take her mother out of the nursing home and to refuse mechanical ventilation at the hospital—something she was sure her mother would not have wanted.

“There have been a lot of ‘what ifs?’ and some anger: someone or something needs to be blamed for what happened,” she said, describing mixed emotions that followed her mother’s death.

But acceptance has sprung from religious conviction. “Mostly, because of our faith in Jesus, we believe that God was ready to take her and she’s in a much better place now.”

Coping with grief, especially when it is complicated by social isolation and trauma, takes time. If you are looking for help, call a local hospice’s bereavement department and ask what kind of services it provides to people in the community. Funeral directors should also have a list of counselors and grief support programs. One option is GriefShare, offered by churches across the country.

Many experts believe the need for these kinds of services will expand exponentially as more family members emerge from pandemic-inspired shock and denial.

“I firmly believe we’re still at the tip of the iceberg, in terms of the help people need, and we won’t understand the full scope of that for another six to nine months,” said Diane Snyder-Cowan, leader of the bereavement professionals steering committee of the National Council of Hospice and Palliative Professionals.

Should You Change Your Living Will Because of the Pandemic?

Some older people are doing that—and ruling out intubation

What kind of hospital care would you want if you had COVID-19 and were desperately ill? In this article, journalist Judith Graham pulls together the facts about treatments, especially with ventilators, along with expert advice on what to do and how to decide. Her article was posted on the KHN website on May 12, 2020, and also ran on the Washington Post.

DENVER ― Last month, Minna Buck revised a document specifying her wishes should she become critically ill.

“No intubation,” she wrote in large letters on the form, making sure to include the date and her initials.

Buck, 91, had been following the news about COVID-19. She knew her chances of surviving a serious bout of the illness were slim. And she wanted to make sure she wouldn’t be put on a ventilator under any circumstances.

“I don’t want to put everybody through the anguish,” said Buck, who lives in a continuing care retirement community in Denver.

For older adults contemplating what might happen to them during this pandemic, ventilators are a fraught symbol, representing a terrifying lack of personal control as well as the fearsome power of technology.

Used for people with respiratory failure, a signature consequence of severe COVID-19, these machines pump oxygen into a patient’s body while he or she lies in bed, typically sedated, with a breathing tube snaked down the windpipe (known as “intubation”).

For some seniors, this is their greatest fear: being hooked to a machine, helpless, with the end of life looming. For others, there is hope that the machine might pull them back from the brink, giving them another shot at life.

“I’m a very vital person: I’m very active and busy,” said Cecile Cohan, 85, who has no diagnosed medical conditions and lives independently in a house in Denver. If she became critically ill with COVID-19 but had the chance of recovering and being active again, she said, “yes, I would try a ventilator.”

Out of all those who become infected with COVID-19, frail older adults are the least likely to survive treatment with a ventilator.

What’s known about people’s chances?

Although several reports have come out of China, Italy and, most recently, the area around New York City, “the data is really scanty,” said Carolyn Calfee, a professor of anesthesia at the University of California-San Francisco [UCSF].

Initial reports suggested that the survival rate for patients on respirators ranged from 14 percent (Wuhan, China) to 34 percent (early data from the United Kingdom). A report from the New York City Area appeared more discouraging, with survival listed at only 11.9 percent.

But the New York data incorporated only patients who died or were discharged from hospitals—a minority of a larger sample. Most ventilator patients were still in the hospital, receiving treatment, making it impossible for researchers to draw reliable conclusions.

Calfee worries that data from these early studies may not apply to US patients treated in hospitals with considerable resources.

“The information we have is largely from settings with tremendous resource gaps and from hospitals that are overwhelmed, where patients may not be treated with optimal ventilator support,” she said. “I would be very worried if people used that data to make decisions about whether they wanted mechanical ventilation.”

Still, a sobering reality emerges from studies published to date: older adults, especially those with underlying medical conditions such as heart, kidney or lung disease, are least likely to survive critical illness caused by the coronavirus or treatment with a ventilator.

“Their prognosis is not great,” said Douglas White, MD, a professor of critical care medicine at the University of Pittsburgh. He cautioned, however, that frail older adults shouldn’t be lumped together with healthy, robust older adults, whose prospects may be somewhat better.

The choice isn’t as black-and-white as go on a ventilator or die.

Like other clinicians, White has observed that older COVID patients are spending considerably longer on ventilators—two weeks or more—than is the case with other critical illnesses. If they survive, they’re likely to be extremely weak, deconditioned, suffering from delirium and in need of months of ongoing care and physical rehabilitation.

“It’s a very long, uphill battle to recovery,” and many older patients may never regain full functioning, said Negin Hajizadeh, MD, an associate professor of critical care medicine at the School of Medicine at Hofstra/Northwell on New York’s Long Island. “My concern is, who’s going to take care of these patients after a prolonged ventilator course—and where?”

In St. Paul, MN, Joyce Edwards, 61, who is unmarried and lives on her own, has been wondering the same thing.

In late April, Edwards revised her advance directive to specify that “for COVID-19, I do not want to be placed on a ventilator.” Previously, she had indicated that she was willing to try a ventilator for a few days but wanted it withdrawn if the treatment was needed for a longer period.

“I have to think about what the quality of my life is going to be,” Edwards said. “Could I live independently and take care of myself—the things I value the most? There’s no spouse to take care of me or adult children. Who would step into the breach and look after me while I’m in recovery?”

People who’ve said “give a ventilator a try but discontinue it if improvement isn’t occurring” need to realize that they almost surely won’t have time to interact with loved ones if treatment is withdrawn, said Christopher Cox, MD, an associate professor of medicine at Duke University.

“You may not be able to live for more than a few minutes,” he noted.

But the choice isn’t as black-and-white as go on a ventilator or die.

“We can give you high-flow oxygen and antibiotics,” Cox said. “You can use BiPAP or CPAP machines [which also deliver oxygen] and see how those work. And if things go poorly, we’re excellent at keeping you comfortable and trying to make it possible for you to interact with family and friends instead of being knocked out in a coma.”

People are thinking about what could happen to them and they want to talk about it. It’s opened up a lot of conversations.
— Rebecca Sudore, MD

Heather McCrone of Bellevue, WA, realized she’d had an “all-or-nothing” view of ventilation when her 70-year-old husband developed sepsis—a systemic infection—last year after problems related to foot surgery.

Over nine hours, McCrone sat in the intensive care unit as her husband was stabilized on a ventilator by nurses and respiratory therapists. “They were absolutely fantastic,” McCrone said. After a four-day stay in the hospital, her husband returned home.

“Before that experience, my feeling about ventilators was, ‘You’re a goner and there’s no coming back,’” McCrone said. “Now, I know that’s not necessarily the case.”

She and her husband both have advance directives stating that they want “lifesaving measures taken unless we’re in a vegetative state with no possibility of recovery.” McCrone said they still need to discuss their wishes with their daughters, including their preference for getting treatment with a ventilator.

These discussions are more important than ever―and perhaps easier than in the past, experts said.

“People are thinking about what could happen to them and they want to talk about it,” said Rebecca Sudore, MD, a professor of medicine at the UCSF. “It’s opened up a lot of conversations.”

Rather than focusing on whether to be treated with a ventilator, she advises older adults to discuss what’s most important to them—independence? time with family? walking? living as long as possible?—and what they consider a good quality of life. This will provide essential context for decisions about ventilation.

“Some people may say, my life is always worth living no matter what type of serious illness or disability I have,” she said. “On the other end of the spectrum, some people may feel there are health situations or experiences that would be so hard that life would not be worth living.”

Sudore helped create Prepare for Your Care, a website and a set of tools to guide people through these kinds of conversations. Recently it was updated to include a section on COVID-19, as have sites sponsored by Compassion & Choices and The Conversation Project. And the Colorado Program for Patient Centered Decisions has published a decision aid for COVID patients considering life support, also available in Spanish.

Some older adults have another worry: What if there aren’t enough ventilators for all the COVID patients who need them?

In that situation, “I would like to say ‘no’ because other people need that intervention more than I do and would benefit, in all probability, more than I would,” said Larry Churchill, 74, an emeritus professor of medical ethics at Vanderbilt.

“In a non-scarcity situation, I’m not sure what I’d do. I’m in pretty good health, but people my age don’t survive as well from any major problem,” Churchill said. “Most of us don’t want a long, lingering death in a custodial facility where the chances of recovery are small and the quality of life may be one we’re not willing to tolerate.”

Why Black Aging Matters Too

COVID-19’s exceptional toll on older African Americans is largely unnoticed

In this important and moving article, Kaiser Health News journalist Judith Graham recounts the myriad reasons why older Blacks are especially vulnerable to the coronavirus and describes their situation. This story also ran on CNN. Posted on the KHN website on September 3, 2020.

Old. Chronically ill. Black.

People who fit this description are more likely to die from COVID-19 than any other group in the country.

They are perishing quietly, out of sight, in homes and apartment buildings, senior housing complexes, nursing homes and hospitals, disproportionately poor, frail and ill, after enduring a lifetime of racism and its attendant adverse health effects. 

Yet older Black Americans have received little attention as protesters proclaim that Black Lives Matter and experts churn out studies about the coronavirus.

“People are talking about the race disparity in COVID deaths, they’re talking about the age disparity, but they’re not talking about how race and age disparities interact: they’re not talking about older Black adults,” said Robert Joseph Taylor, director of the Program for Research on Black Americans at the University of Michigan’s Institute for Social Research.

A KHN analysis of data from the Centers for Disease Control and Prevention underscores the extent of their vulnerability. It found that African Americans ages 65 to 74 died of COVID-19 five times as often as whites. In the 75-to-84 group, the death rate for Blacks was three and a half times greater. Among those 85 and older, Blacks died twice as often. In all three age groups, death rates for Hispanics were higher than for whites but lower than for Blacks.

(The gap between Blacks and whites narrows over time because advanced age, itself, becomes an increasingly important, shared risk. Altogether, 80 percent of COVID-19 deaths are among people 65 and older.)

The data comes from the week that ended Feb. 1, through Aug. 8. Although breakdowns by race and age were not consistently reported, it is the best information available.

Mistrustful of Outsiders

Social and economic disadvantage, reinforced by racism, plays a significant part in unequal outcomes. Throughout their lives, Blacks have poorer access to health care and receive services of lower quality than does the general population. Starting in middle age, the toll becomes evident: more chronic medical conditions, which worsen over time, and earlier deaths.

Several conditions—diabetes, chronic kidney disease, obesity, heart failure and pulmonary hypertension, among others—put older Blacks at heightened risk of becoming seriously ill and dying from COVID-19.

Yet many vulnerable Black seniors are deeply distrustful of government and health care institutions, complicating efforts to mitigate the pandemic’s impact.

The infamous Tuskegee syphilis study—in which African American participants in Alabama were not treated for their disease—remains a shocking, indelible example of racist medical experimentation. Just as important, the lifelong experience of racism in health care settings—symptoms discounted, needed treatments not given—leaves psychic scars.

In Seattle, Catholic Community Services sponsors the African American Elders Program, which serves nearly 400 frail, homebound seniors each year.

“A lot of Black elders in this area migrated from the South a long time ago and were victims of a lot of racist practices growing up,” said Margaret Boddie, 77, who directs the program. “With the pandemic, they’re fearful of outsiders coming in and trying to tell them how to think and how to be. They think they’re being targeted. There’s a lot of paranoia.”

“They won’t open the door to people they don’t know, even to talk,” complicating efforts to send in social workers or nurses to provide assistance, Boddie said.

In Los Angeles, Karen Lincoln directs Advocates for African American Elders and is an associate professor of social work at the University of Southern California.

Older Blacks are keeping to themselves. They’re deeply distrustful of government and of health care providers. 

“Health literacy is a big issue in the older African American population because of how people were educated when they were young,” she said. “My maternal grandmother, she had a third-grade education. My grandfather, he made it to the fifth grade. For many people, understanding the information that’s put out, especially when it changes so often and people don’t really understand why, is a challenge.”

What this population needs, Lincoln suggested, is “help from people who they can relate to”—ideally, a cadre of African American community health workers.

With suspicion running high, older Blacks are keeping to themselves and avoiding health care providers.

“Testing? I know only of maybe two people who’ve been tested,” said Mardell Reed, 80, who lives in Pasadena, California, and volunteers with Lincoln’s program. “Taking a vaccine [for the coronavirus]? That is just not going to happen with most of the people I know. They don’t trust it and I don’t trust it.”

Reed has high blood pressure, anemia, arthritis and thyroid and kidney disease, all fairly well controlled. She rarely goes outside because of COVID-19. “I’m just afraid of being around people,” she admitted.

Other factors contribute to the heightened risk for older Blacks during the pandemic. They have fewer financial resources to draw upon and fewer community assets (such as grocery stores, pharmacies, transportation, community organizations that provide aging services) to rely on in times of adversity. And housing circumstances can contribute to the risk of infection.

In Chicago, Gilbert James, 78, lives in a 27-floor senior housing building, with 10 apartments on each floor. But only two of the building’s three elevators are operational at any time. Despite a “two-person-per-elevator policy,” people crowd onto the elevators, making it difficult to maintain social distance.

“The building doesn’t keep us updated on how they’re keeping things clean or whether people have gotten sick or died” of COVID-19, James said. Nationally, there are no efforts to track COVID-19 in low-income senior housing and little guidance about necessary infection control.

Large numbers of older Blacks also live in intergenerational households, where other adults, many of them essential workers, come and go for work, risking exposure to the coronavirus. As children return to school, they too are potential vectors of infection.

‘Striving Yet Never Arriving’

In recent years, the American Psychological Association has called attention to the impact of racism-related stress in older African Americans—yet another source of vulnerability.

This toxic stress, revived each time racism becomes manifest, has deleterious consequences to physical and mental health. Even racist acts committed against others can be a significant stressor.

“This older generation went through the civil rights movement. Desegregation. Their kids went through busing. They grew up with a knee on their neck, as it were,” said Keith Whitfield, provost at Wayne State University and an expert on aging in African Americans. “For them, it was an ongoing battle, striving yet never arriving. But there’s also a lot of resilience that we shouldn’t underestimate.”

This year, for some elders, violence against Blacks and COVID-19’s heavy toll on African American communities have been painful triggers. “The level of stress has definitely increased,” Lincoln said.

During ordinary times, families and churches are essential supports, providing practical assistance and emotional nurturing. But during the pandemic, many older Blacks have been isolated.

In her capacity as a volunteer, Reed has been phoning Los Angeles seniors. “For some of them, I’m the first person they’ve talked to in two to three days. They talk about how they don’t have anyone. I never knew there were so many African American elders who never married and don’t have children,” she said.

Meanwhile, social networks that keep elders feeling connected to other people are weakening.

“What is especially difficult for elders is the disruption of extended support networks, such as neighbors or the people they see at church,” said Taylor, of the University of Michigan. “Those are the ‘Hey, how are you doing? How are your kids? Anything you need?’ interactions. That type of caring is very comforting and it’s now missing.”

In Brooklyn, NY, Barbara Apparicio, 77, has been having Bible discussions with a group of church friends on the phone each weekend. Apparicio is a breast cancer survivor who had a stroke in 2012 and walks with a cane. Her son and his family live in an upstairs apartment, but she does not see him much.

“The hardest part for me [during this pandemic] has been not being able to go out to do the things I like to do and see people I normally see,” she said.

In Atlanta, Celestine Bray Bottoms, 83, who lives on her own in an affordable senior housing community, is relying on her faith to pull her through what has been a very difficult time. Bottoms was hospitalized with chest pains this month—a problem that persists. She receives dialysis three times a week and has survived leukemia.

“I don’t like the way the world is going. Right now, it’s awful,” she said. “But every morning when I wake up, the first thing I do is thank the Lord for another day. I have a strong faith and I feel blessed because I’m still alive. And I’m doing everything I can not to get this virus because I want to be here a while longer.”

KHN data editor Elizabeth Lucas contributed to this story.

 

COVID-19 Sets Off a Pandemic of Despair for Older People

The longer their isolation goes on, the harder it is for many

As communities cautiously open up after the lockdown, older adults are being urged to not leave home yet because they’re more vulnerable than those who are younger. Journalist Judith Graham explores some of the consequences in this article that was posted on the KHN website on May 28, 2020. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. Graham’s story also ran on CNN 

As states relax coronavirus restrictions, older adults are advised, in most cases, to keep sheltering in place. But for some, the burden of isolation and uncertainty is becoming hard to bear.

This “stay at home awhile longer” advice recognizes that older adults are more likely to become critically ill and die if infected with the virus. At highest risk are seniors with underlying medical conditions such as heart, lung or autoimmune diseases.

Yet after two months at home, many want to go out into the world again. It is discouraging for them to see people of other ages resume activities. They feel excluded. Still, they want to be safe.

“It’s been really lonely,” said Kathleen Koenen, 77, who moved to Atlanta in July after selling her house in South Carolina. She’s living in a 16th-floor apartment while waiting to move into a senior housing community, which has had cases of COVID-19.

“I had thought that would be a new community for me, but everyone there is isolated,” Koenen said. “Wherever we go, we’re isolated in this situation. And the longer it goes on, the harder it becomes.”

(Georgia residents age 65 and older [were] required to shelter in place through June 12, along with other vulnerable populations.)

Her daughter, Karestan Koenen, is a professor of psychiatric epidemiology at Harvard University’s T.H. Chan School of Public Health. During a Facebook Live event this month, she said her mother had felt in March and April that “everyone was in [this crisis] together.” But now, that sense of communality has disappeared.

Making it worse, some seniors fear that their lives may be seen as expendable in the rush to reopen the country.

“[Older adults] are wondering if their lives are going to end shortly for reasons out of their control,” said Linda Fried, MD, dean of the Mailman School of Public Health at Columbia University, in a university publication. “They’re wondering if they’ll be able to get the care they need. And most profoundly, they’re wondering if they are going to be cast out of society. If their lives have value.”

If anything, I’ve seen a very strong will to live and acceptance of whatever one’s fate might be.

— Marc Agronin, MD 

On the positive side, resilience is common in this age group. Virtually all older adults have known adversity and loss; many have a “this too shall pass” attitude. And research confirms that they tend to be adept at regulating their reactions to stressful life events—a useful skill in this pandemic.

“If anything, I’ve seen a very strong will to live and acceptance of whatever one’s fate might be,” said Marc Agronin, MD, a geriatric psychiatrist and vice president of behavioral health at Miami Jewish Health, a 20-acre campus with independent living, assisted living, nursing home care and other services.

Several times a week, psychologists, nurses and social workers are calling residents on the campus, doing brief, mental health checks and referring anyone who needs help for follow-up attention. There’s “a lot of loneliness,” Agronin said, but many seniors are “already habituated to being alone or are doing OK with contact [only] from staff.”

Still, “if this goes on much longer,” he said, “I think we’ll start to see less engagement, more withdrawal, more isolation—a greater toll of disconnection.”

Erin Cassidy-Eagle, PhD, a clinical associate professor of psychiatry at Stanford University, shares that concern.

From mid-March to mid-April, all her conversations with older patients revolved around several questions: “How do we keep from getting COVID-19? How am I going to get my needs met? What’s going to happen to me?”

But more recently, Cassidy-Eagle said, “older adults have realized the course of being isolated is going to be much longer for them than for everyone else. And sadness, loneliness and some hopelessness have set in.”

She tells of a woman in her 70s who moved into independent living in a continuing care community because she wanted to build a strong social network. Since March, activities and group dining have been canceled. The community’s director recently announced that restrictions would remain until 2021.

“This woman had a tendency to be depressed, but she was doing OK,” Cassidy-Eagle said. “Now she’s incredibly depressed and she feels trapped.”

A 93-year-old plunged into despair after her assisted living facility went on lockdown in mid-March. Medications have not helped.

Especially vulnerable during this pandemic are older adults who have suffered previous trauma. Gary Kennedy, MD, director of the division of geriatric psychiatry at Montefiore Medical Center in New York City, has seen this happen to several patients, including a Holocaust survivor in her 90s.

This woman lives with her son, who got COVID-19. Then she did as well. “It’s like going back to the terror of the [concentration] camp,” Kennedy said, “an agonizing emotional flashback.”

Jennifer Olszewski, EdD, an expert in gerontology at Drexel University, works in three nursing homes in the Philadelphia area. As is true across most of the country, no visitors are allowed, and residents are mostly confined to their rooms.

“I’m seeing a lot of patients with pronounced situational depression,” she said, “decreased appetite, decreased energy, a lack of motivation and overall feelings of sadness.”

“If this goes on for months longer, I think we’ll see more people with functional decline, mental health decline and failure to thrive,” Olszewski said.

Some are simply giving up. Anne Sansevero, a geriatric care manager in New York City, has a 93-year-old client who plunged into despair after her assisted living facility went on lockdown in mid-March. Antidepressant and anti-anxiety medications have not helped.

“She’s telling her family and her health aides ‘life’s not worth living. Please help me end it,’” Sansevero said. “And she’s stopped eating and getting out of bed.”

The woman’s attentive adult children are doing all they can to comfort their mother at a distance and are feeling acute anguish.

What can be done to ease this sort of psychic pain? Kennedy of Montefiore has several suggestions.

Older adults may not own up to feeling depressed, but some will describe physical symptoms, such as difficulty sleeping or concentrating.

“Don’t try to counter the person’s perception and offer false reassurance. Instead, say, yes, this is bad, no doubt about it. It’s understandable to be angry, to be sad. Then provide a sense of companionship. Tell the person, ‘I can’t change this situation but I can be with you. I’ll call tomorrow or in a few days and check in with you again.’”

“Try to explore what made life worth living before the person started feeling this way,” he said. “Remind them of ways they’ve coped with adversity in the past.”

If someone is religiously inclined, encourage them to reach out to a pastor or a rabbi. “Tell them, I’d like to pray together or read this Bible passage and discuss it,” Kennedy said. “Comforting person-to-person interaction is a very effective form of support.”

Do not count on older adults to own up to feeling depressed. “Some people will acknowledge that, yes, they’ve been feeling sad, but others may describe physical symptoms—fatigue, difficulty sleeping, difficulty concentrating,” said Julie Lutz, PhD, a postdoctoral fellow at the University of Rochester.

If someone has expressed frequent concerns about being a burden to other people or has become notably withdrawn, that’s a worrisome sign, Lutz said.

In nursing homes, ask for a referral to a psychologist or social worker, especially for a loved one who’s recovering from a COVID hospitalization.

“Almost everybody that I’m seeing has some kind of adjustment disorder because their whole worlds have been turned upside down,” said Eleanor Feldman Barbera, PhD, an elder care psychologist in New York City. “Talking to a psychologist when they first come in can help put people on a good trajectory.”

The National Alliance on Mental Illness has compiled a COVID-19 information and resource guide, available at https://www.nami.org/covid-19-guide. The American Psychological Association has created a webpage devoted to this topic and recently wrote about finding local mental health resources. The Substance Abuse and Mental Health Services Administration has a 24-hour hotline, 1-800-662-4357. And the national suicide prevention hotline for those in acute distress is 1-800-273-8255.

 

Parenting Your Aging Parents

What can you do if they refuse the help they obviously need?

You can see that your parents are having difficulties, perhaps even running risks they shouldn’t, but they’re quite sure they can manage. What can—and should—you do? Writing for Kaiser Health News (KHN), journalist Judith Graham consults some experts for advice on a problem many families confront. Her article was posted on the KHN website on Dec. 19, 2019.

David Solie’s 89-year-old mother, Carol, was unyielding. “No, I will not move,” she told her son every time he suggested that she leave her home and relocate to a senior-living residence.

And it didn’t stop there. Although Carol suffered from coronary artery disease, severe osteoporosis, spinal compression fractures and unsteady balance, she didn’t want assistance. When Solie brought in aides to help after a bad fall and subsequent surgery, his mother fired them in a matter of days.

“In her mind, she considered it a disgrace to have anybody in her home,” Solie said. “This was her domain for over 50 years, a place where she did everything by herself and in her own way.”

Conflicts of this sort often threaten relationships between aging parents and their adult children just when understanding and support are needed the most. Instead of working together to solve problems, families find themselves feuding and riven by feelings of resentment and distress.

Solie got so worked up, he considered going to court and asking for a conservatorship—a legal arrangement that would have given him control over his mother’s affairs. (The situation was complicated because Solie’s brother, who has Down syndrome, lived at the family home.) But Solie’s lawyer advised that this course of action would destroy his relationship with his mother.

Ask your parents how they’d prefer to solve problems and what their priorities are. 

Today, Solie, a health care consultant and writer with a well-regarded blog about aging, sounds the same theme when he consults with adult children caring for parents. Make preserving trust and keeping your relationship intact—not winning arguments—a priority, he suggests. What your parents most need is confidence that you’ll listen to them, take their concerns seriously and stay by their side no matter what happens, he says.

How adult children communicate with parents can go a long way toward easing tensions, Solie says. Instead of telling your parents what to do, ask how they’d prefer to solve problems. Elicit their priorities and recognize their values when making suggestions. Give them choices whenever possible. Be attuned to their unexpressed needs and fears.

When Dr. Lee Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, asked 68 older adults in eight focus groups why they resisted help, the answers varied. They said they were afraid of losing their independence, becoming a burden on loved ones, being taken advantage of, and relinquishing control over their lives.

Asked what might make a difference, the older adults said they liked the idea of “interdependence”—acknowledging that people need one another from childhood to older age. And they found it helpful to think that “by accepting help, they were in turn helping the person providing the help,” according to Lindquist’s study, published last year in the Journal of the American Geriatrics Society.

Unfortunately, no amount of patience, compassion or forbearance will work in some conflict-ridden circumstances. But here’s some of what experts have learned:

Be patient. Give your parents time to adjust. At first, Jane Wolf Frances’ 87-year-old mother, Lillian Wolf, wouldn’t consider moving with Jane’s father from New York City to the Los Angeles area, where Frances, her only child, lived.

Although Lillian had Alzheimer’s disease, and Frances had planned to give her one-story house to her parents, “I deferred to my mother’s fear that she was going to be losing something essential,” she said.

During three years of caregiving, Frances had learned to not rush her parents. She knew they had slowed down and needed time to process change.

So Frances waited until her parent’s home health aide called with concerns about their ability to live independently. After discussing the situation with their physician, Frances approached her mother again. A move to assisted living would be a fresh start, allowing the family to spend more time together, she said. After several conversations, her mother finally agreed.

Frances, a psychologist, is the author of a new book, Parenting Our Parents: Transforming the Challenge into a Journey of Love, and founder of www.parentingourparents.org. Stay calm when disagreements arise with your elderly parents and tamp down your emotional reactions, she tells families. Listen carefully to your parents’ concerns and let them know you’re trying to help them accomplish their goals, not impose your agenda.

“It’s often helpful to say to your parents ‘I’m doing this for you; I’d like you to do something for me,’” Frances said. “People who are good parents perk up on that one and will ask, ‘OK, what can I do for you?’ Then you can tell them, ‘You can let me help you more.’”

Let them know you’re on their side. Denise Brown was convinced her parents, Roger and Sally Loeffler, were making a terrible decision. In the previous year, Roger, 84, had been diagnosed with bladder and prostate cancer and undergone extensive surgery. Sally, 81, had suffered three internal bleeds and had one-third of her stomach removed.

Brown didn’t think they could live on their own anymore, and her parents had moved into a retirement community upon her recommendation. But then, at a family meeting, her mother stood up and said, “I’m not dying in this dump. I hate it here.” As Brown and her siblings turned to their father, he said, “I’ll do whatever your mom wants.”

When her parents decided to move to an apartment, Brown was confrontational. “I raised my voice and said, ‘This is not good, this is terrible,’” she said. “They were shocked, but they said ‘It doesn’t matter; this is what we’re going to do.’”

As Brown thought about her reaction, she realized she thought her parents would be safer and have a more “gentle” death in the retirement community. “Then it occurred to me—this wasn’t what my parents wanted. They valued their independence. It’s their decision about how the end of life plays out.”

It doesn’t work to try to communicate when your parents are tired or angry. 

Brown let her parents know she’d respect their wishes but would need to set limits. Her work—Brown is the founder of www.CareGiving.comhad to be a priority, and her parents would need to arrange other assistance if she couldn’t be available. (Brown’s two brothers and sister help out.) And they’d have to be willing to talk openly about how their choices were affecting her.

What doesn’t work: trying to communicate when any one of them is tired or angry. “We never get anywhere,” Brown said. “Everybody gets defensive and shuts down.”

What does work: “Asking them questions like how do you think we should try to solve this problem? It’s interesting to hear their answers, and it makes working together so much easier.”

Stop expecting your parents to be as they used to be. After her father’s death, Loi Eberle was distraught when her mother, Lucille Miller, became involved with a man she and her siblings didn’t like. With his encouragement, Miller invested in real estate and lost a great deal of money.

But nothing Eberle or her siblings said could convince her mother that this relationship was destructive.

Eberle struggled with resentment and anger as her mother’s needs escalated after a heart attack and a diagnosis of myasthenia gravis, a severe neurological disease. “Mom and I had this love/hate relationship all my life, and there was a huge need for healing in this relationship,” she said.

In 2012, Eberle moved Miller, then 89, from her longtime home in Minneapolis to a nursing home in northern Idaho, near where Eberle lives. Gradually, she realized that her mother “had transitioned to being someone else”—someone who was vulnerable and at her life’s end.

“I think for a long time I had this idea that I was going to help Mom come back to who she was, and I spent a lot of time trying to do that,” Eberle said. “I finally had to forgive myself for failure and understand that this is the life process.”

With this shift in perspective, emotional tension dissipated. “When I’d visit, my mother was always so happy to see me,” Eberle said. Miller died in March 2017 at age 94.

Letting go of unrealistic expectations can defuse conflicts. This is the final stage of your journey with your parents. Try to put angst to one side and help make this time meaningful for them and for you. Most of all, your parents want to feel emotionally connected and accepted, even in a diminished state.

 

Where Should You Go to Recover after a Hospitalization? 

It’s a tough decision, often made too quickly with too little help 

There are big differences in the quality of the care provided by rehab facilities, and poor care can affect your recovery. Judith Graham, a contributing columnist for Kaiser Health News (KHN), investigates the problem here and suggests ways to make better choices. Her article was posted on the KHN website on April 11, 2019. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Every year, nearly two million people on Medicare—most of them older adults—go to a skilled nursing facility to recover after a hospitalization. But choosing the facility can be daunting, according to an emerging body of research.

Typically, a nurse or a social worker hands out a list of facilities a day or two—sometimes hours—before a patient is due to leave. The list generally lacks such essential information as the services offered or how the facilities perform on various measures of care quality.

Families scramble to make calls and, if they can find the time, visit a few places. Usually they’re not sure what the plan of care is (what will recovery entail? how long will that take?) or what to expect (will nurses and doctors be readily available? how much therapy will there be?).

If asked for a recommendation, hospital staffers typically refuse, citing government regulations that prohibit hospitals from steering patients to particular facilities and that guarantee patients free choice of medical providers. (This is true only for older adults with traditional Medicare; private Medicare Advantage plans can direct members to providers in their networks.)

“The reality is that we leave patients and families without good guidance at a really vulnerable point in their care trajectory,” said Robert Burke, MD, an assistant professor of medicine at the University of Pennsylvania’s Perelman School of Medicine.

When hospitals present patients who need short-term rehab with a list of possible places to go, there are, on average, 34 facilities on the list. 

Amid stress and confusion, older adults and their families frequently make less than optimal choices. According to a 2018 report from the Medicare Payment Advisory Commission (MedPAC), an independent agency that advises Congress on Medicare, nearly 84 percent of Medicare beneficiaries who go to a skilled nursing facility (SNF) after a hospital stay could have selected a higher-rated provider within a 15-mile radius. On average, MedPAC noted, hospitals refer patients needing short-term rehabilitation to 34 facilities. (Fewer options are available in rural areas.)

Where older adults go is important “because the quality of care varies widely among providers,” MedPAC’s report notes, and this affects how fully people recover from surgeries or illnesses, whether they experience complications such as infections or medication mix-ups, and whether they end up going home or to a nursing home for long term care, among other factors.

A recently completed series of reports from the United Hospital Fund in New York City highlights how poorly older adults are served during this decision-making process. In focus groups, families described feeling excluded from decisions about post-hospital care and reported that websites such as Medicare’s Nursing Home Compare, which rates facilities by quality of care and other performance criteria, weren’t recommended, easy to use or especially helpful.

What do older adults and family members need to know before selecting a rehab facility after a hospital stay? Recent academic research, policy reports and interviews with experts elucidate several themes.

The Basics

Who needs post-hospital care in a rehabilitation center? Surprisingly, there are no definitive guidelines for physicians or discharge planners. But older adults who have difficulty walking or taking care of themselves, have complex medical conditions and complicated medication regimens, need close monitoring or don’t have caregiver support are often considered candidates for this kind of care, according to Kathryn Bowles, professor of nursing at the University of Pennsylvania School of Nursing.

Medicare will pay for short-term rehabilitation at SNFs under two conditions: (1) if an older adult has had an inpatient hospital stay of at least three days; and (2) if an older adult needs physical, occupational or speech/language therapy at least five days a week or skilled nursing care seven days a week.

Be sure to check your status, because not all the time you spend in a hospital counts as an inpatient stay; sometimes, patients are classified as being in observation care,” which doesn’t count toward this three-day requirement.

Traditional Medicare pays the full cost of a semiprivate room and therapy at a skilled nursing facility for up to 20 days. Between 21 and 100 days, patients pay a coinsurance rate of $170.50 per day. After 100 days, a patient becomes responsible for the full daily charge—an average $400 a day. Private Medicare Advantage plans may have different cost-sharing requirements.

Nationally, the average stay for rehabilitation is about 25 days, according to a recent editorial on choosing post-hospital care in the Journal of the American Geriatrics Society.

Quality Varies Widely

In its 2018 report, MedPAC documented large variations in the quality of care provided by SNFs. Notably, facilities with the worst performance were twice as likely to readmit patients to the hospital as those with the best performance. (Readmissions put patients at risk of a host of complications. This measure applied only to readmissions deemed potentially avoidable.) Patients at the best-performing facilities were much more likely to be discharged back home and to regain the ability to move around than those at the worst-performing facilities.

In April, for the first time, Medicare’s Nursing Home Compare website is separating out performance measures for short-term stays in SNFs, for people who are recovering after a hospitalization, and long-term stays, for people with severe, chronic, debilitating conditions.

Seven measures for short-term stays will be included: the portion of patients who experience an improvement in their functioning (such as the ability to walk), return home to the community, are readmitted to the hospital, visit the emergency room, get new prescriptions for antipsychotic medications, have pain well controlled, and are adequately treated for bedsores, according to David Gifford, MD, senior vice president for quality and regulatory affairs at the American Health Care Association, which represents nursing homes and assisted living centers. There will also be a separate “star rating” for short-term stays—an overall indicator of quality.

Questions to Ask

Before making a decision on post-hospital care, older adults and family members should address the following issues:

Your post-hospital needs. Bowles, who has studied what kind of information patients and families find valuable, suggests people ask: What are my needs going to be during the post-hospital period? What kind of help will be needed, and for approximately how long?

Lena Chen, MD, an associate professor of internal medicine at the University of Michigan who has published research examining wide variations in spending on post-acute care after a hospitalization, suggests asking: What is my anticipated recovery, and what do you think the most difficult parts of it might be?

What the SNF provides. Bowles also suggests people ask why the SNF is being recommended instead of home health care. How will the SNF meet my needs, specifically? What kind of medical care and therapy will I get there? From whom and how often?

Carol Levine, who directs the United Hospital Fund’s Families and Health Care Project, suggests that patients and families seek out details about facilities. Is a doctor readily available? (New research suggests 10 percent of patients in skilled nursing facilities are never seen by a physician, nurse practitioner or physician assistant.) What kind of equipment and specialized services are on-site? Can the facility accommodate people with cognitive issues or who need dialysis, for instance?

Getting information early. Vincent Mor, MD, professor of health services, policy and practice at Brown University’s School of Public Health, said patients and families should insist on seeing a discharge planner soon after entering the hospital and start the planning process early. When a planner comes by, “say, ‘I don’t care about choices: Tell me, what do you think will be best for me?’ Be insistent,” he advised.

Burke warns that doctors don’t typically know which SNF is likely to be the best fit for a particular patient—a topic he has written about. He suggests that older adults or their families insist they be given time to contact facilities if they feel rushed. While there’s considerable pressure to discharge patients quickly, there’s also a requirement that hospital discharges be safe, Burke noted. “If we’re waiting for a family to tell us which facility they want a patient to go to, we can’t make a referral or discharge the patient,” he said.

 

A Doctor Speaks Out about Ageism in Medicine

A frank discussion of the biases that undercut older people’s health care

In a wide-ranging interview, Louise Aronson, MD, a well-known geriatrician and author, talks about ageism among physicians, why it exists and what health care could and should be like for older people. Kaiser Health News (KHN) contributing columnist Judith Graham asks the questions in this eye-opening article that was posted on the KHN website on May 30, 2019. 

Society gives short shrift to older age. This distinct phase of life doesn’t get the same attention that’s devoted to childhood. And the special characteristics of people in their 60s, 70s, 80s and beyond are poorly understood.

Medicine reflects this narrow-mindedness. In medical school, physicians learn that people in the prime of life are “normal,” and scant time is spent studying aging. In practice, doctors too often fail to appreciate older adults’ unique needs or to tailor treatments appropriately.

Imagine a better way. Older adults would be seen as “different than,” not “less than.” The phases of later life would be mapped, and expertise in aging would be valued, not discounted.

With the growth of the elder population, it’s time for this to happen, argues Dr. Louise Aronson, a geriatrician and professor of medicine at the University of California-San Francisco, in her new book Elderhood.

It’s an in-depth, unusually frank exploration of biases that distort society’s view of old age and that shape dysfunctional health policies and medical practices.

In an interview, edited for clarity and length, Aronson elaborated on these themes.

Q: How do you define “elderhood”?

Elderhood is the third major phase of life, which follows childhood and adulthood and lasts for 20 to 40 years, depending on how long we live.

Medicine pretends that this part of life isn’t really different from young adulthood or middle age. But it is. And that needs a lot more recognition than it currently gets.

Q: Does elderhood have distinct stages? 

It’s not like the stages of child development—being a baby, a toddler, school age, a teenager—which occur in a predictable sequence at about the same age for almost everybody.

People age differently—in different ways and at different rates. Sometimes people skip stages. Or they move from an earlier stage to a later stage but then move back again.

Let’s say someone in their 70s with cancer gets really aggressive treatment for a year. Before, this person was vital and robust. Now, he’s gaunt and frail. But say the treatment works and this man starts eating healthily, exercising and getting lots of help from a supportive social network. In another year, he may feel and look much better, as if time had rolled backwards.

Q: What might the stages of elderhood look like for a healthy older person?

In their 60s and 70s, people’s joints may start to give them trouble. Their skin changes. Their hearing and eyesight deteriorate. They begin to lose muscle mass. Your brain still works, but your processing speed is slower.

In your 80s and above, you start to develop more stiffness. You’re more likely to fall or have trouble with continence or sleeping or cognition—the so-called geriatric syndromes. You begin to change how you do what you do, to compensate.

Because bodies alter with aging, your response to treatment changes. Take a common disease like diabetes. The risks of tight blood sugar control become higher and the benefits become lower as people move into this “old old” stage. But many doctors aren’t aware of the evidence or don’t follow it.

Q: You’ve launched an elderhood clinic at UCSF. What do you do there?

I see anyone over age 60 in every stage of health. Last week, my youngest patient was 62 and my oldest was 102.

I’ve been focusing on what I call the five P’s. First, the whole person—not the disease—is my foremost concern.

Prevention comes next. Evidence shows that you can increase the strength and decrease the frailty of people through age 100. The more unfit you are, the greater the benefits from even a small amount of exercise. And yet doctors don’t routinely prescribe exercise. I do that.

It’s really clear that purpose, the third P, makes a huge difference in health and wellness. So I ask people, “What are your goals and values? What makes you happy? What is it you are doing that you like best or you wish you were doing that you’re not doing anymore?” And then I try to help them make that happen.

Many people haven’t established priorities, the fourth P. Recently, I saw a man in his 70s who’s had HIV/AIDS for a long time and who assumed he would die decades ago. He had never planned for growing older or done advance-care planning. It terrified him. But now he’s thinking about what it means to be an old man and what his priorities are, something he’s finally willing to let me help him with.

Perspective is the fifth P. When I work on this with people, I ask, “Let’s figure out a way for you to keep doing the things that are important to you. Do you need new skills? Do you need to change your environment? Do you need to do a bit of both?”

Perspective is about how people see themselves in older age. Are you willing to adapt and compensate for some of the ways you’ve changed? This isn’t easy by any means, but I think most people can get there if we give them the right support.

Q: You’re very forthright in the book about ageism in medicine. How common is that?

Do you know the famous anecdote about the 97-year-old man with the painful left knee? He goes to a doctor, who takes a history and does an exam. There’s no sign of trauma, and the doctor says, “Hey, the knee is 97 years old. What do you expect?” And the patient says, “But my right knee is 97 and it doesn’t hurt a bit.”

That’s ageism: dismissing an older person’s concerns simply because the person is old. It happens all the time.

On the research side, traditionally, older adults have been excluded from clinical trials, although that’s changing. In medical education, only a tiny part of the curriculum is devoted to older adults, although in hospitals and outpatient clinics they account for a very significant share of patients.

The consequence is that most physicians have little or no specific training in the anatomy, physiology, pharmacology and special conditions and circumstances of old age—though we know that old people are the ones most likely to be harmed by hospital care and medications.

Q: What does ageism look like on the ground?

Recently, a distressed, geriatrician colleague told me a story about grand rounds at a major medical center, where the case of a very complex older patient brought in from a nursing home was presented. [Grand rounds are meetings where doctors discuss interesting or difficult cases.]

When it was time for comments, one of the leaders of the medical service stood up and said, “I have a solution to this case. We just need to have nursing homes be 100 miles away from our hospitals.” And the crowd laughed.

Basically, he was saying: we don’t want to see old people; they’re a waste of our time and money. If someone had said this about women or people of color or LGBTQ people, there would have been outrage. In this case, there was none. It makes you want to cry.

Q: What can people do if they encounter this from a doctor?

If you put someone on the defensive, you won’t get anywhere.

You have to say in the gentlest, friendliest way possible, “I picked you for my physician because I know you’re a wonderful doctor. But I have to admit, I’m pretty disappointed by what you just said, because it felt to me that you were discounting me. I’d really like a different approach.”

Doctors are human beings, and we live in a super-ageist society. They may have unconscious biases, but they may not be malicious. So, give them some time to think about what you said. If after some time they don’t respond, you should definitely change doctors.

Q: Do you see signs of positive change?

Absolutely. There’s a much larger social conversation around aging than there was five years ago. And that is making its way to the health system.

Surgeons are thinking more and more about evaluating and preparing older adults before surgery and the different kind of care they need after. Anesthesiologists are thinking more about delirium, which has short-term and long-term impacts on older adults’ brains. And neurologists are thinking more about the experience of illness as well as the pathophysiology and imaging of it.

Then you have the age-friendly, health-system movement, which is unquestionably a step in the right direction. And a whole host of start-ups that could make various types of care more convenient and that could, if they succeed, end up benefiting older people.