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.

 

Addiction in Older Adults: A Problem on the Rise

Substance abuse can look different as people age

Jane’s adult children worried she was sinking into dementia. Her behavior had changed. She wasn’t taking care of her physical appearance. She was forgetful and missing appointments. Maybe it was time, family members wondered, to move her into assisted living. 

Then they discovered the real problem: at the age of 89, Jane was an alcoholic. 

She’d struggled with alcoholism earlier in life but had been sober since age 70. She had taken sobriety seriously, attending Alcoholics Anonymous meetings and sponsoring others who struggled. But after a series of setbacks—her husband of 57 years died, she had to stop driving, and worsening arthritis meant she couldn’t swim anymore—Jane relapsed. 

“I think she was lonely, and felt a lot of loss, and thought, ‘I haven’t drank in 20 years; maybe I can just have a glass of wine,’” said Diana Santiago, MSW, clinical supervisor of the Older Adult Program at Caron Treatment Centers, where Jane eventually underwent treatment. “After a couple of months, she was right back where she started.” 

Jane’s story isn’t uncommon. Substance addiction is on the rise among older adults. 

“Nearly one million adults 65 and up in the United States are living with a substance abuse disorder,” said Lisa Stern, LCSW, assistant vice president, Senior & Adult Services at Family & Children’s Association (FCA), a human services agency on Long Island, NY. From 2002 to 2021, the rate of overdose deaths, accidental or intentional, quadrupled among older adults, according to a research letter published in the March 2023 JAMA Psychiatry

Alcohol and prescription painkillers top the list of substances most commonly abused by people 60 and up. Most older people admitted to treatment facilities are addicted to alcohol. Approximately 20 percent of all adults ages 60 to 64, and around 11 percent over age 65, report they are currently binge drinking, according to the National Institute on Alcohol Abuse and Alcoholism.

In later life, people are more likely to use alcohol or drugs to relieve pain than to get high. 

Opioid abuse is rising among older people too. While the US population of adults 55 and older rose by about 6 percent between 2013-2015, the proportion of people in that age group seeking treatment for opioid use disorder increased nearly 54 percent. The proportion of older adults using heroin more than doubled between 2013-2015 (in part due to those who switched to heroin—an illicit opioid—after misusing prescription opioids). One study estimated that the prevalence of prescription drug abuse among older adults may be as high as 11 percent.

Marijuana use is also on the rise among older people in the United States. However, experts suspect that’s due to Boomers, the first generation to widely accept marijuana use, reaching older age. Admission to treatment facilities for marijuana alone is rare, although it can often be part of the mix of drugs and/or alcohol that led to addiction.

Older addicts tend to follow different patterns than those who are younger. They include “hardy survivors”—people like Jane, who struggled with addiction for years off and on or continuously. Others first become addicts in their later years. Use of illicit drugs, like cocaine or meth, declines after young adulthood. But common challenges in later life—isolation, depression and anxiety, financial worries, family conflict, the loss of a spouse or other loved ones, physical or mental decline, adapting to retirement—can turn into triggers for abuse. 

“Older adults are less likely to use drugs or alcohol to get high,” said Jeremy Klemanski, MBA, CEO of Gateway Foundation, one of the nation’s largest addiction treatment organizations. “Instead, they tend to use these substances to reduce pain or handle emotional difficulties.” 

Many older adults experience chronic pain, anxiety or insomnia, all of which may be treated with highly addictive medications like opioids or benzodiazepines (“benzos”), like alprazolam (Xanax), diazepam (Valium) and lorazepam (Ativan.) Older people may be even more prone to abuse these drugs than their younger counterparts. Plus, many older adults must manage multiple health conditions with an assortment of medications prescribed by several specialists, usually without careful coordination, making misuse or overuse more likely. 

“These prescriptions are often not monitored closely, as seniors who cannot get out easily do not follow up regularly with their physicians,” said Stern. “Doctors should be making patients aware of drugs that can be highly addictive, but often they don’t have these conversations. The older adult may be taking the medication incorrectly, or taking too much, but not considering it abusive.” 

Physiological changes that occur with aging can make substance use riskier and misuse more deadly. The ability to metabolize drugs or alcohol declines with age. Someone who could have a beer or two in their 30s with no consequences, for example, is more likely to become impaired in their 60s or 70s. 

Addiction Can Be Easily Missed

Substance abuse is often overlooked or misdiagnosed in older adults. Many of the symptoms of abuse—forgetfulness, drowsiness, confusion, mood swings or shaky hands—are easily dismissed as signs of aging. Even when addiction is recognized, family members are often prone to minimize it.

“People may think the older adult isn’t working or driving, so what’s the harm?” said Klemanski. “The harm is that the substance is harmful physically, and addiction is often a sign of loneliness and lack of connectedness. Both can lead to premature death.” 

Santiago cited a patient in his early 60s who’d been prescribed Aricept for dementia. 

“His medical records indicated that he had Alzheimer’s,” she said. “When he came in for treatment, he was confused and his memory was bad.” 

As it turned out, the patient had been taking a variety of stimulants, opioids and benzodiazepines, along with alcohol. After four weeks without the drugs and alcohol, the man scored within normal range in a follow-up cognitive screening. 

That scenario is not uncommon, Santiago added.

“Once we’re able to clear the substances away, we’re able to see what’s really going on, and nine times out of 10, those older adult patients have their cognition improved significantly,” she said. 

Confronting Trauma 

The telltale sign that Tim, 68, had a problem was his credit card statements. Family members discovered he was “drunk buying” guitars online, ultimately spending more than $100,000, which he couldn’t afford. His daughter referred him to FCA Long Island for treatment. 

In counseling, Tim shared how his mother had walked out on his family when he was 14 and was never heard from again. For the first time, he realized that trauma had affected his relationships for more than 50 years. 

Unresolved trauma is a common factor contributing to addiction among older adults, according to Chris Walter, a certified recovery peer advocate at FCA. 

“Often the Boomers don’t want to talk about these things,” he said. “That wasn’t a generation that went to therapy or talked about their problems. If we can get that [childhood trauma] out, it does help them to free up demons.”  

People who have had a successful life can become isolated as they age, with time on their hands, and fill that vacuum with alcohol or drugs. 

Older adulthood, of course, can also bring new trauma and loss. Friends and family members die. A move from a longtime home to assisted living can feel like a death. Retirement, or an unplanned job loss, may leave an older adult at loose ends. 

That’s what happened with Dan, 63, when he lost his job 17 years ago. He spiraled from a social drinker into an alcoholic. 

“When you go from being a workaholic, and your professional career to a large extent defines you, to being undecided about your future and with whom you fit in, it leads to self-questioning, and for some of us, self-medicating,” he said.  

“It’s very typical to have an older adult [with addiction] who has had a successful life,” said Klemanski. “They’ve raised children. They’ve had a career or contributed something positive to their community. But as they got older, some of the things that helped define life are pulled away from them. They may have more time on their hands or feel isolated. A vacuum occurs, and that’s filled with alcohol or drugs.”  

Getting Treatment

Drinking got Francisco, 68, banned from the local senior center. He’d shown up intoxicated, behaved aggressively and fell in the parking lot. He was referred for treatment at FCA Long Island. Counselors discovered that he was not only drinking a pint of vodka a day but also taking clonazepam (Klonopin) prescribed by his doctor for anxiety. 

In treatment, counselors helped Francisco to better manage his drinking and to address a root cause of the problem: isolation. His case manager set up a meal delivery service, so he’d eat more nutritious meals more regularly, and provided him with a tablet computer and Amazon Echo device, along with lessons on how to use both. 

“He was able to learn how to access YouTube and the internet, which allowed him to enjoy his passions of cars and music in a new way and socialize virtually to reduce his isolation,” said Christiana Mangiapane, LMSW, director of senior mental health services at FCA Long Island. “As a result, he had something to look forward to every day besides a drink.” 

Francisco’s treatment seems to be helping. But as the numbers of older adults struggling with addiction increase, many worry that treatment facilities and programs can’t keep up. Researchers for the JAMA Psychiatry report on overdoses urged policy makers to pursue proposals applying mental health parity rules within Medicare, so that older adults will have better mental health and substance-use disorder coverage and more options. Medicare has covered opioid treatment programs such as methadone clinics since 2020 and will cover a broader range of outpatient treatments beginning in January 2024. However, it does not cover residential treatment.

When older people who are addicted get treatment, they have a better chance of recovering than people who are younger. 

Models of care for treating substance abuse in older people are still evolving. Inpatient treatment typically begins with detox—a period of medical observation while the patient withdraws from the substance, sometimes with the aid of medication. Because older adults tend to metabolize drugs more slowly, most need longer periods of detox. 

Other treatment approaches might include individual counseling, cognitive behavioral therapy, support groups, medication and building connections with other people. Ideally, treatment is tailored to individual needs. Older adults with other medical or mental health issues must have those managed while in residential treatment. Support groups with peers, rather than with people in their 20s and 30s, are more effective. 

“A 74-year-old man who’s retired and whose wife just died isn’t going to relate to a bunch of 30-year-olds with small children and jobs, whose struggles might relate more to drinking too much when they’re with friends,” said Santiago. 

On the plus side, recovery rates tend to be higher among older adults who seek treatment compared to younger adults, according to Klemanski. 

“Their positive life experiences help them focus on the benefits of rehab, which can make them more disciplined in their recovery,” he said.   

Finding Sobriety

Still, the first hurdle is motivating the older adult to seek help. For Dan, that motivation came in the form of a health scare. His drinking finally led to liver disease; doctors told him he’d need a transplant or he’d die within three months.  

“Treatment for me was literally a life-or-death decision,” he said. 

Dan enrolled in a program at Gateway and cobbled together his own recovery strategy, combining the support of friends and family with daily prayer and attending Mass four times a week at his church. He’s been sober for more than a year now. To his doctor’s surprise, his liver disease seems to be in remission. 

For him, the AA principle of “one day at a time” was his key coping strategy.

“Anyone who has [quit drinking] knows it’s more like 10 or 20 minutes at a time,” he said. “Everyone has to develop the tricks, skills and tools that work for them.”

For Jane, an intervention staged by her adult children spurred her to travel from Florida to Wernersville, PA, to undergo residential treatment at Caron Treatment Centers. By age 90, Jane was once again sober. A follow-up cognitive screening showed that Jane didn’t have dementia after all.  

“Her memory came back, and she was able to live independently again,” said Santiago. “Even though she may only have a few years left on this earth, she’s enjoying a better quality of life during those years.”

Tips for Long-Distance Caregivers

Advice from the experts on how to manage care from afar 

This is part 2 of a series about caregiving from a distance. Read part 1 here.

Fern, 92, called her daughter in a panic. She couldn’t turn off her television because she couldn’t find the remote. Due to Fern’s hearing loss, the volume was very high. Fern was afraid the blaring TV would keep her and her neighbors up all night.

Her daughter, Monica, couldn’t help. She was in Michigan; Fern lives alone in Sarasota, FL. 

Fern’s situation wasn’t life threatening. But it’s an example of how even a minor issue can become a crisis when an older loved one lives far away. For the millions of Americans in that situation, it’s a major source of stress. In fact, research suggests that long-distance caregiving is even more stressful than face-to-face caregiving. 

Unlike those caring for an older adult nearby, long-distance caregivers often face situations that can’t just be handled as they arise, whether it’s a missing TV remote or a serious medical crisis like a stroke or an injury due to a fall. There are no easy fixes. But experts advise that thinking ahead, and assembling a support team, can help families navigate long-distance caregiving more effectively. Here are some tips. 

Divide and Conquer 

Start by gathering family members for a conference, virtually or in-person, advises Maria Hood, a social worker and director of admissions at United Hebrew, a senior care community in the New York metropolitan area.  

“Develop a strategy to divide and conquer,” Hood says. Make a plan to rotate visits and regular phone calls. Clarify roles so no one person feels overburdened. Those who can’t visit in person might tackle other tasks: a family member who is an accountant can help manage financial issues; another who’s a medical professional can establish lines of communication with the older adult’s physician. 

As much as possible, involve the older adult in the conversation, and initiate it before a medical crisis or other “point of vulnerability” occurs, adds Barry Wu, MD, professor of medicine (geriatrics) at Yale School of Medicine.  

“Understand what your [older adult] family member’s wishes are,” Wu says. “If they don’t want aggressive treatment in the event of a medical emergency, the family should know that. If their heart stops, or they stop breathing, do they want to be hospitalized? Do they want a feeding tube? You need to know what their wishes are.” 

Other questions to ask might include:  

  • What kind of support would be helpful now? That might include transportation to doctor visits or outings, help with meals, errands or housekeeping. 
  • Could alterations in the home make life easier and safer? For example, switching from an upstairs bedroom to a downstairs bedroom or installing a ramp leading down from the front porch could prevent future accidents or make daily life easier.
  • What about anticipated future needs? If an illness or loss in mobility makes it difficult or impossible to live alone, what would the older adult want to do? Move into assisted living? Move in with a family member? Stay at home, with in-home support, as long as possible? 

Remember to keep the older adult’s wishes paramount, says Teri Dreher, an RN and patient advocate who assists older adults and their families. 

“A sense of dignity, autonomy and agency over one’s own life is even more important as we age,” she says. “Nobody likes their children to talk to them like they’re children.” 

Dreher says older adults can become stubborn or unwilling to share honestly about their struggles. Some may resist discussing the issue or insist, “Don’t ever put me in a home.” In that case, a visit to an assisted living community might help reassure them. 

“I worked with a couple in their late 70s that stayed in their house, even though they couldn’t take care of it, until the house was finally condemned,” Dreher says. “Once they moved into a senior living community, they saw how great the food was and changed their minds immediately.”

Start the money conversation as part of these family talks. How is a loved one paying for daily expenses now? How might they pay for additional care if it’s needed? These questions are important for any caregiver, but especially when family members aren’t close enough to quickly access financial records. Needs can change suddenly; an older adult could become incapacitated temporarily or permanently. 

Explore Resources 

Many agencies and local governments offer services to assist older adults—these can be lifesavers when family members can’t be present. However, it’s not always easy to find out about these services. For example, some local charities, city governments or agencies offer wellness checks—regularly scheduled phone calls to check in with an older adult, with follow-up calls and/or visits if they don’t respond. To determine if such a service is available in the older adult’s community, try searching online using the zip code or town (such as, “older adult welfare check 75024”). Or check the search tool of Shepherd’s Centers of America, which provides welfare checks through more than 50 affiliates around the United States. 

Hood suggests contacting a hospital in the older adult’s area and speaking with staff in the social work department. Similarly, the marketing staff at a senior living community near the older adult’s home will likely know what’s available locally.

Create a directory with contact information, including the older adult’s physicians, local fire, police and EMTs, and non-emergency numbers, like those of the apartment security staff or community director where the older adult lives, and names and numbers of neighbors, friends and family members. Add a list of medications and a list of locations of key documents, such as insurance policies and the person’s will. Share copies with family members and post a copy on the older adult’s refrigerator or another prominent spot. 

Enlist Technology

A big source of stress for many long-distance caregivers: worry over the older adult’s safety. Unfortunately, it’s not uncommon for older adults, especially those 90 and older, to fall and end up on the floor for hours before someone comes to help. If the older adult is amenable, consider a medical alert pendant and/or installing an in-home monitoring system. Most require some type of subscription or monthly connection fee that is not covered by insurance or Medicare.  

These systems are typically either “active,” where the user presses a button on a home unit, wearable device or wall to call for help, or “passive,” transmitting data from the user to a trusted care partner without requiring any action on the older adult’s part should they fall or become unresponsive. For example, the Apple Watch offers a passive fall detection function that can be set up to call 911 automatically if the wearer falls. (However, this technology isn’t yet 100 percent reliable and automatic updates to the watch’s software may disable the function without alerting the user.) 

Make the Most of Visits 

Many older adult living communities see an uptick in inquiries right after the holidays, when family members visit and notice signs that their loved one isn’t coping well. Visits are a good time to observe. Look for piles of dirty dishes or unwashed laundry; unopened mail, overdue notices or other signs that paperwork isn’t getting handled; rotten food in the fridge—or no fresh food at all; scorch marks on pans or countertops, possibly signs of inattention to cooking tasks. 

Visits also present opportunities to set up local lines of communication. Accompany the older adult on a doctor visit and ask to be added to the list of emergency contacts. Inquire about joining future telehealth visits, with the older-adult patient’s permission, as a way of tracking health conditions.

Keep in mind, after the visit, that an older person’s health, mobility or cognitive status can change quickly. Be ready to pivot. 

Finally, use a visit to enlist “boots on the ground.” Go to home care agencies, visiting nurse associations, transportation services and other local support services to learn what they offer. Exchange contact information with the older adult’s friends and neighbors and encourage them to call if anything raises concerns, like unusual behavior or if something seems out of place (a door left open or lights on overnight).

The key to long-distance caregiving: find local people who can provide help when your loved one needs it.

If finances allow, consider a consultation with a geriatric care manager in the older adult’s area. Also called “aging life care managers,” these professionals are usually licensed nurses or social workers experienced in the care of older people. They can provide a neutral assessment of the older adult’s situation and advise on options available locally. Generally, they serve clients and families whose incomes are too high to qualify for publicly financed services like Medicaid. Care managers can also offer references to reputable home-care agencies or professional caregivers in the area. Find a care manager in the older adult’s community by using the Aging Life Care Association’s expert search tool or the Eldercare Locator, a public service of the US Administration on Aging.

If the older adult has complex medical issues, consider hiring a local patient advocate who can step in should an emergency arise. Once a relationship is established, the patient advocate can accompany the older adult to the ER and serve as a point of contact until an out-of-town family member arrives. 

Unfortunately, these services are not inexpensive. Labor costs have increased considerably in recent years. In-home care now averages about $26 an hour for homemaker services (cleaning, cooking, etc.) and $27 an hour for a home health aide, according to Genworth’s Cost of Care Survey. Some companies’ employee assistance programs (EAP) assist employees in caring for older family members, with help finding caregiving services and even help covering the costs. 

Some Medicare Advantage plans also provide coverage for personal care assistance, non-medical transportation and in-home meal delivery through a private provider or services like Papa.com. Papa is a platform that connects older adults with Papa Pals, vetted local people available to provide companionship or to assist with cooking, cleaning, transportation and laundry. 

A Papa Pal came to the rescue when Fern couldn’t find her remote. Connor Carroll has been visiting 92-year-old Fern regularly, helping her with light housekeeping, running errands and assisting with other daily needs. After each visit, he calls Fern’s daughter, Monica, to fill her in on how Fern is doing. 

“We’ve built a rapport,” Carroll says. “It’s a comfortable relationship. Fern calls me ‘the son she never had.’ Monica tells me it’s nice to have me as her eyes and ears in the area.”

Hood says that’s a key to long-distance caregiving: connecting with professionals and others in the local area who can step in to help when needed. 

“When it comes to caring for an older adult,” she says, “it really does take a village.” 

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.”

 

Caring from Afar

Long-distance caregivers face daunting challenges  

This is part 1 of a series about caregiving from a distance. Read part 2 here.

A few years before he passed away, Maria Hood noticed that her father wasn’t shaving or showering regularly, which was unusual, because the retired military man had always been impeccably groomed. 

“He wasn’t getting into the shower because he was afraid of falling,” she said. “And his home, normally spotless, was getting messier. The dust bunnies were starting to have babies.” 

It was clear he needed help. But her father lived in Florida, and Hood was in New York.

Hood’s dilemma is a reality for millions of Americans: providing eldercare from afar. According to a 2012 Journal of Gerontological Social Work report, nearly one-third of informal caregiving occurs from a distance. 

Studies estimate that four to seven million people in the United States are long-distance caregivers, and those numbers are expected to rise as longevity increases and birth rates decline. Mobility factors in too. Adult children move away from their parents to pursue careers; parents migrate to warmer climates when they retire. When the older adult begins to experience medical issues, or mobility or cognitive decline, relocating isn’t always possible for either party. 

While the physical and emotional toll of caregiving is well documented, less has been documented about how distance plays a role. What is clear: “Geographic separation can exacerbate care-related stressors,” according to the 2012 report. 

“When you live far away, you don’t know what’s going on,” said Hood, a social worker and director of admissions at United Hebrew, a senior care community in the New York metropolitan area. “You are not the person with eyes on the ground.” 

Long-distance caregivers don’t handle round-the-clock physical care, but many experience significant emotional and psychological distress. They may feel even more distressed than local caregivers, as researchers Joan Monin, PhD, and Richard Schulz, PhD, were surprised to find in a 2009 study.

Distance can make problems seem worse than they actually are. 

“Caregivers who lived farther away, who were the siblings of the primary caregivers, often were more distressed than the caregivers providing the daily support,” said Monin, associate professor at Yale School of Public Health. 

Similarly, a 2004 study found that long-distance caregivers were more likely to report emotional distress than caregivers either residing with their care recipients or less than one hour away.

Stress often stems from the perception that a loved one is suffering, whether it’s physical pain, loneliness and isolation, or confusion due to dementia. Distance tends to amplify that perception. 

“When you’re not nearby, you may be thinking the situation is bad all the time,” Monin said. “There’s no way to know if things are actually fine if you’re not there. The psychological distress is the ruminating, the feeling that you need to stay vigilant.” 

In working with older adults with dementia and their children, Teri Dreher often hears concerns about safety—and feelings of helplessness.  

“I call it the fear of unknowing,” said Dreher, a registered nurse and patient advocate who assists older adults and their families. “It’s not understanding what’s going on and being so far away, you can’t do anything except worry.” 

Diana Cannon, a companion caregiver for older adults in the Dallas area, serves as “another set of eyes” for families who live out of town. Clients hire her to visit their loved ones in senior living communities, sometimes even in high-end facilities that purport to provide round-the-clock care. 

If you hire a caregiver locally, she can report in regularly and even send smartphone videos to reassure you. 

“That’s a big source of stress—making sure family members are getting adequate care,” she said. Communities may boast posh facilities and lavish amenities, she said, but don’t always offer consistent care, which usually boils down to the staff person on duty, who’s typically working for low pay. 

“You don’t know what’s going on, especially if the person has dementia,” Cannon said. “I’m there to make sure they’re not lonely, that they get turned over regularly [if bedridden], that someone answers when they hit the call button, that they’re being listened to and their medications are being dispensed correctly.”

One of her clients called Cannon an “extra daughter.” The client lives in Houston; her mother lived in a senior living community in Dallas until her death at age 96 in 2018. Because her mother had severe hearing loss, talking over the phone was almost impossible. 

“I’d have to scream the whole time,” the daughter said. She hired Cannon to visit and call afterward with updates. Sometimes Cannon even sent short iPhone videos showing how her mom was doing. 

Even with the means to pay for extra help, the client said, caregiving from a distance was stressful for her and her sister, who also lives hours away. 

“When you’re there with your loved one, you wish you were doing what needed to be done at home,” she said. “When you’re at home, you wish you could be there. Diane was our ‘boots on the ground.’ She helped reassure us that Mom was getting good care.” 

Strained Relationships 

Family dynamics often complicate the long-distance caregiving situation.

“Distance can invoke a lot of feelings of sadness, guilt and shame,” said Vanessa Sommer, lead family therapist for signature programming at Caron Treatment Centers in Pennsylvania. “The adult child feels guilt for not being able to be an immediate support source. The caregiver who lives far away may feel a sense of rejection if they offer something as support or help, and it’s refused. The parent may feel abandoned. Or they don’t want to be a burden to their kids or to be seen as less than capable.”

The family’s relationship history plays a role too. “Caregiving crises can bring up a lot of old resentments,” Sommer said. 

When one adult child lives close to the older adult—and the other lives far away—that can lead to conflicting perceptions of how the older adult is faring. 

“The adult child who is closer may have more daily engagement and involvement with the older adult, and they see the changes over a period of time,” Sommer said. “Whereas the distanced child who has only intermittent contact may not necessarily see the physical changes, and that can lead to disagreements.” 

It’s not uncommon for siblings to argue over caregiving decisions, especially when medical crises arise, according to Marilyn Gugliucci, professor and director of geriatrics research at the University of New England. 

“Just as there are helicopter parents, there are helicopter kids—adult children who are too controlling because they fear losing the parent,” she said. “The older adult may have said, ‘I don’t want to go through heroic measures, I’ve had my life, let me go when the time comes.’ But one of the adult children might feel the need to control their lives to ensure they live longer.” As much as possible, the older adult’s wishes should dictate how to proceed. 

It can be difficult to find out from a distance about local resources available for caregivers. 

The stress of caregiving often has ripple effects on the relationships with the caregiver’s spouse and children. Sommer, who works with families of older adults with substance abuse disorder, says a stressful caregiving situation usually affects the entire family. 

Cognitive loss or personality changes due to dementia can make communication even more problematic. Plus, older adults are often reluctant to admit that they’re having difficulty. 

That’s been a challenge for Hood, who is also caring for her in-laws, who live in Tucson. 

“So much depends on the prior relationship between the adult child and elderly parent,” said Hood. “My mother-in-law is the most amazing, sweet woman. But is she at her best dealing with a husband in poor health? Not always.” 

Family members may get frustrated when an older adult is less than forthcoming, or even dishonest, about their situation. Monin encourages empathy. 

“Imagine someone doubting your ability to care for yourself,” she said. “That can be super threatening, even when the parents and children have a good relationship.” 

“All you can do is give each other a lot of grace,” said Hood. “Try to put yourself in the person’s shoes. Most older people are fiercely independent. They don’t want to burden their children. They may dread moving into a senior living community or having someone coming into their household. It’s easier to think, ‘I’m OK.’” 

Searching for Solutions

Tracking down assistance in another city can also pose challenges. Some communities offer services like daily telephone calls or other welfare checks for older adults. Finding out about those services, however, isn’t easy for those who live far away. Monin thinks policy makers need to assist long-distance caregivers in finding and connecting with resources from afar. She’d like to see a searchable, technology platform that would allow caregivers to find reputable resources in the care recipient’s local area, such as senior community centers, long-term-care centers, hospitals, physicians and other networks of supportive communities.  

In the meantime, to keep stress as manageable as possible, experts advise thinking ahead. Anticipate problems, know the older adult’s wishes in the event of an emergency and have a plan. 

“It’s all about prevention,” said Barry Wu, MD, professor of medicine (geriatrics) at Yale School of Medicine. “If your loved one falls, for example, you don’t want to be scrambling at the last minute.” 

Wu is in Connecticut; his 90-year-old mother lives in Pittsburgh. He relies on technology to help bridge the distance. 

“Her mobility has steadily declined over the last few years, so I set up cameras in her room, with her permission,” he said. He can look in on his mother any time from his smartphone. In addition, he calls her once a day, at a specific time, to make sure she’s OK. He assembled a list of local contacts—his mother’s physicians, the security person in her apartment building, neighbors and friends—which he posted on her refrigerator and saved in his phone. When problems crop up, he can call on his brother, who lives in the Pittsburgh area, to step in. 

Maria Hood began to travel to Florida more often once her father’s housekeeping and hygiene started to lapse. She hired a housekeeper to tackle some of the household chores, which allowed her father to stay in his home a little longer. Eventually, he moved into an independent living senior community, and then, after an injury, into skilled nursing, where he spent the rest of his days. 

In response to her experiences with her father and her in-laws, Hood and her husband sat down with their son and daughter and expressed their wishes for how they’d like to be cared for when the time comes. She draws on her own experience for her job at United Hebrew as she advises families navigating caregiving from a distance.

“The first thing I tell them is, ‘You are not alone,’” she said. “There are a lot of people in the same boat.” 

Dementia Can Take a Toll on Financial Health

Some families only learn about it after the damage is done

In this article, health and science journalist Sarah Boden looks at what happens when dementia leads to financial disasters for individuals and their families. She also describes the so-far-ineffective efforts governments have made to protect those living with dementia from attempts to exploit them. KFF Health News posted Boden’s piece on June 20, 2023. Her work was supported by a partnership that included WESA (Pittsburgh’s NPR station), NPR and KFF Health News. 

Angela Reynolds knew her mother’s memory was slipping, but she didn’t realize how bad things had gotten until she started to untangle her mom’s finances: unpaid bills, unusual cash withdrawals and the discovery that, oddly, the mortgage on the family home had been refinanced at a higher interest rate.

Looking back, Reynolds realizes her mother was in the early stages of Alzheimer’s disease: “By the time we caught on, it was too late.”

Reynolds and her mother are among a large group of Americans grappling with the financial consequences of cognitive decline.

A growing body of research shows money problems are a possible warning sign—rather than only a product—of certain neurological disorders. This includes a 2020 study from Johns Hopkins University of more than 81,000 Medicare beneficiaries that found people with Alzheimer’s and related dementias became more likely to miss bill payments up to six years before a formal diagnosis.

The reach of these conditions is enormous. One recent study found nearly 10 percent of people over age 65 have dementia; more than twice as many are living with mild cognitive impairment.

Missing the Signs of Declining Cognition

One weekday in the spring of 2018, Reynolds sat next to her 77-year-old mother, Jonnie Lewis-Thorpe, in a courtroom in downtown New Haven, CT. She listened in discomfort as strangers revealed intimate details of their own finances in a room full of people waiting their turn to come before the judge.

Then it hit her: “Wait a second. We’re going to have to go up there, and someone’s going to be listening to us.”

That’s because the family home was in foreclosure. The daughter hoped if she explained to the judge that her mother had Alzheimer’s disease, which had caused a series of financial missteps, she could stop the seizure of the property.

Reynolds can’t pinpoint when Alzheimer’s crept into her mother’s life. A widow, Lewis-Thorpe had lived alone for several years and had made arrangements for her aging, including naming Reynolds her power-of-attorney agent. But Reynolds lived a 450-mile drive away from New Haven, in Pittsburgh, and wasn’t there to see her mom’s incremental decline.

When a person’s mental abilities begin to decline, problems can grow exponentially.

It wasn’t until Reynolds began reviewing her mother’s bank statements that she realized Lewis-Thorpe—once a hospital administrator—had long been in the grip of the disease.

Financial problems are a common reason family members bring their loved ones to the office of Robin Hilsabeck, PhD, a neuropsychologist at the University of Texas at Austin Dell Medical School, who specializes in cognitive issues.

“The brain is really a network, and there are certain parts of the brain that are more involved with certain functions,” said Hilsabeck. “You can have a failure in something like financial abilities for lots of reasons caused by different parts of the brain.”

Some of the reasons are due to normal aging, as Reynolds had assumed about her mother. But when a person’s cognition begins to decline, the problems can grow exponentially.

Dementia’s Causes—and Sometimes Ruthless Impact

Dementia is a syndrome involving the loss of cognitive abilities. The cause can be one of several neurological illnesses, like Alzheimer’s or Parkinson’s, or brain damage from a stroke or head injury.

In most cases, an older adult’s dementia is progressive. The first signs are often memory slips and changes in high-level cognitive skills related to organization, impulse control and the ability to plan—all, critical for money management. And because the causes of dementia vary, so do the financial woes it can create, said Hilsabeck.

For example, with Alzheimer’s comes a progressive shrinking of the hippocampus. That’s the catalyst for memory loss that, early in the course of the disease, can cause a person to forget to pay their bills.

Lewy body dementia is marked by fluctuating cognition: a person veers from very sharp to extremely confused, often within short passages of time. Those with frontotemporal dementia can struggle with impulse control and problem-solving, which can lead to large, spontaneous purchases.

And people with vascular dementia often run into issues with planning, processing and judgment, making them easier to defraud. “They answer the phone, and they talk to the scammers,” said Hilsabeck. “The alarm doesn’t go off in their head that this doesn’t make sense.”

Handling finances is difficult. If you have mild cognitive impairment, you can make mistakes even if you’re doing well otherwise. 

For many people older than 65, mild cognitive impairment, or MCI, can be a precursor to dementia. But even people with MCI who don’t develop dementia are vulnerable.

“Financial decision-making is very challenging cognitively,” said Jason Karlawish, MD, a specialist in geriatrics and memory care at the University of Pennsylvania’s Penn Memory Center. “If you have even mild cognitive impairment, you can make mistakes with finances, even though you’re otherwise doing generally OK in your daily life.”

Some mistakes are irreversible. Despite Reynolds’ best efforts on behalf of her mother, the bank foreclosed on the family home in the fall of 2018.

Property records show that Lewis-Thorpe and her husband bought the two-bedroom Cape Cod for $20,000 in 1966. Theirs was one of the first Black families in their New Haven neighborhood. Lewis-Thorpe had planned to pass this piece of generational wealth on to her daughters.

Instead, U.S. Bank now owns the property. A 2021 tax assessment lists its value as $203,900.

Financial Protections Are Slow to Come

Though she can’t prove it, Reynolds suspects someone had been financially exploiting her mom. At the same time, she feels guilty for what happened to Lewis-Thorpe, who now lives with her: “There’s always that part of me that’s going to say, ‘At what point did it turn, where I could have had a different outcome?’”

Karlawish often sees patients who are navigating financial disasters. What he doesn’t see are changes in banking practices or regulations that would mitigate the risks that come with aging and dementia.

“A thoughtful country would begin to say we’ve got to come up with the regulatory structures and business models that can work for all,” he said, “not just for the 30-year-old.”

But the risk-averse financial industry is hesitant to act—partly out of fear of getting sued by clients.

The Senior Safe Act in 2018, the most recent major federal legislation to address elder wealth management, attempts to address this reticence. It gives immunity to financial institutions in civil and administrative proceedings stemming from employees reporting possible exploitation of a senior—provided the bank or investment firm has trained its staff to identify exploitative activity.

It’s a lackluster law, said Naomi Karp, an expert on aging and elder finances who spent eight years as a senior analyst at the Consumer Financial Protection Bureau’s Office for Older Americans. That’s because the act makes training staff optional, and it lacks government oversight. “There’s no federal agency that’s charged with covering it or setting standards for what that training has to look like,” Karp said. “There’s nothing in the statute about that.”

If you’ve named a ‘trusted contact,’ brokerage firms are now required to notify that person if something seems off about your account. 

One corner of the financial industry that has made modest progress is the brokerage sector, which concerns the buying and selling of securities, such as stocks and bonds. Since 2018, the Financial Industry Regulatory Authority—a nongovernmental organization that writes and enforces rules for brokerage firms—has required agents to make a reasonable effort to get clients to name a “trusted contact.” 

Trusted contacts are similar to the emergency contact health care providers request. They’re notified by a financial institution of concerning activity on a client’s account, then receive a basic explanation of the situation. Ron Long, a former head of Aging Client Services at Wells Fargo, gave the hypothetical of someone whose banking activity suddenly shows regular, unusual transfers to someone in Belarus. A trusted emergency contact could then be notified of that concerning activity.

But the trusted contact has no authority. The hope is that, once notified, the named relative or friend will talk to the account holder and prevent further harm. It’s a start, but a small one. The low-stakes effort is limited to the brokerage side of operations at Wells Fargo and most other large institutions. The same protection is not extended to clients’ credit card, checking or savings accounts.

A Financial Industry Reluctant to Help

When she was at the Consumer Financial Protection Bureau, Karp and her colleagues put out a set of recommendations for companies to better protect the wealth of seniors. The 2016 report included proposals on employee training and changes to fraud detection systems to better detect warning signs, such as atypical ATM use and the addition of a new owner’s name to an existing checking account. “We would have meetings repeatedly with some of the largest banks, and they gave a lot of lip service to these issues,” Karp said. “Change is very, very slow.”

Karp has seen some smaller community banks and credit unions take proactive steps to protect older customers—such as instituting comprehensive staff training and improvements to fraud detection software. But there’s a hesitancy throughout the industry to act more decisively, which seems to stem in part from fears about liability, she said. Banks are concerned they might get sued—or at least lose business—if they intervene when no financial abuse has occurred, or a customer’s transactions were benign.

Policy solutions that address financial vulnerability also present logistical challenges. Expanding something as straightforward as use of trusted contacts isn’t like flipping a light switch, said Long, the former Wells Fargo executive. “You have to solve all the technology issues: Where do you house it? How do you house it? How do you engage the customer to even consider it?”

Still, a trusted contact might have alerted Reynolds much sooner that her mom was developing dementia and needed help.

“I fully believe that they noticed signs,” Reynolds said of her mother’s bank. “There are many withdrawals that came out of her account where we can’t account for the money. … Like, I can see the withdrawals. I can see the bills not getting paid. So where did the money go?”

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.

 

What AI Can Do for Older Adults

Among other things, it can keep them safer and connect them better to those they love

When Alyssa Weakley’s 82-year-old grandmother was diagnosed with Alzheimer’s in 2019, the family scrambled to respond. Her grandmother lived in southern California; Weakley and other family members were in northern California and Washington State. As problems arose, they took turns flying down to see the older woman. Often, that meant leaving a job or making child-care arrangements on short notice. 

Weakley, who is an assistant professor in the Department of Neurology at University of California Davis Health, tried to find a way to use technology to help. Despite her expertise in both Alzheimer’s and assistive technologies, she had no luck. 

“There was nothing that allowed us to help her or to get feedback to know what was really going on with her,” said Weakley. 

Now, she’s part of a research team working on what she hopes will be a solution: Interactive Care, or I-Care, a platform that will use unobtrusive sensors to help caregivers stay connected to older adults living with mild cognitive impairment or early-stage dementia. 

Unlike most existing platforms to monitor older adults, I-Care will harness the power of artificial intelligence (AI) 

“Advances in AI technology offer many ways of improving people’s lives,” said Björn Herrmann, PhD, a Scientist and Canada Research Chair in Auditory Aging at the Rotman Research Institute at Baycrest Academy in Toronto. “I believe these will ultimately enable older adults to be more independent and live longer in their own homes.”

Wide Range of Benefits

“Artificial intelligence” broadly refers to machines that can understand, synthesize and generate knowledge [in] much the way that humans do, although the precise definition is still a matter of debate. AI is already embedded in many aspects of our daily lives; if you rely on a virtual personal-assistant app like Siri or Alexa, or drive a car with a navigational system or parking assist, you’re using AI.  

The public release last year of ChatGPT—a type of AI that can respond to questions and generate novel content in natural language—has raised awareness of AI’s rapidly expanding capabilities. It also highlighted concerns about its potential for proliferating misinformation and threatening individual privacy and security. 

“It’s a huge, tectonic change in the whole landscape of technology that has opened up a new era of possibilities,” said Vol Berezhniy, founder of OBS Group, an AI tech startup in Plano, TX. 

An AI system would “think” and make judgments the way a doctor does. 

AI’s potential for assisting older adults spans a wide spectrum that includes robots, exoskeleton devices, intelligent homes, AI-enabled wearables, voice-activated devices and self-driving automobiles. AI-powered devices might serve as rehabilitation therapists, emotional supporters, social companions, personal organizers and cognitive assistants. 

Many experts are especially optimistic about AI’s potential to provide more personalized medical care to older adults. Daniel Chow, MD, co-director of the Center for Artificial Intelligence in Diagnostic Medicine at the University of California, Irvine, is studying ways AI might facilitate precision medical care, which “delivers the right therapy for the right patient at the right time.”

For example, Chow said, researchers are discovering that there are many types of Alzheimer’s or dementia. A patient’s genetic makeup may point to one type or another. Each type may respond better to some medications or treatments than others. Imaging studies, like brain MRIs, provide vast amounts of additional data, including changes in the brain over time. Patients’ speech patterns might also provide clues about the type and stage of disease. Even patients’ social, economic or environmental situations may also need to factor into treatment plans.   

“That’s a lot of information, so how do we put it all together?” asked Chow, who is also neuroradiology chief in the Department of Radiological Sciences at the UCI School of Medicine. “AI allows us the computational method to include and incorporate all this information and tailor treatment accordingly.” An AI system would “think” and make judgments in the same way that a doctor does, but with the ability to quickly factor in vast quantities of data from imaging, genetics, patient history and more—and even “learn” from information collected on each patient’s response to treatment.  

Robots as Companions

Frank’s story started with a common problem: he was having trouble taking care of himself. The older man, who had mild dementia, wasn’t eating regularly or remembering to take his medications. 

Worried, his son bought him a companion robot. At first, Frank was resistant. “That thing is going to murder me in my sleep!” he groused. But soon Frank warmed to the robot, which prepared his meals, cleaned his home, helped with his medications and became a constant companion. 

Frank’s story is fiction—it’s the plot of the 2012 film Robot & Frank. But AI is turning fantasy into reality on some levels. Humanlike robots that can perform all the tasks of a butler or home health aide—and converse naturally with a human being—are still a long way off, but advances in AI are making robots more and more useful for specialized tasks, said Wendy Rogers, PhD, professor of kinesiology and community health at the University of Illinois and director of the Human Factors and Aging Laboratory. 

Several tech startups are experimenting with social robots, which provide companionship and conversation. Rogers has studied Moxie, a robot designed for children with autism, for its potential for providing social engagement for older adults with mild cognitive impairment. Unlike Alexa or Siri, users don’t need to remember to use the robot’s name to engage. 

“Moxie is very socially interactive,” she said. “One of our older adults was just talking with it and having a whole conversation.” 

Another social robot on the market is ElliQ, a small device resembling Pixar’s playful desk lamp and accompanied by a tablet. As part of a pilot project, the New York State Office for the Aging is providing ElliQ to older adult clients like Judy Washington, 74. ElliQ greets Washington every morning when she wakes up (cued when she turns on the room light), reminds her to exercise and take her medication, keeps track of her comings and goings and occasionally tells corny jokes. Washington laughs when she shares how ElliQ even gave her a nickname: “Nugget.”  

“I know it’s a machine, but it helps a great deal,” said Washington, who lives alone and has limited mobility due to a stroke. “It keeps you company.”  

For older adults who live alone, a companion robot can provide reassurance, mental stimulation and even a connection to other people. 

ElliQ typically interacts with a user 20 times a day; the device is programmed to be proactive and emotionally intelligent. Initial studies show that ElliQ reduces loneliness by 80 percent and spurred some 82 percent of users to be more physically active. 

“For older people living alone, a robotic companion can provide a sense of having someone in the house, some reassurance and safety, keep them connected to the world and other people and provide cognitive stimulation,” said Elizabeth Broadbent, PhD, professor of psychological medicine at the University of Auckland in New Zealand. “The robots can also send health data and medical alerts to medical professionals and family members to provide assistance when required.”

Broadbent has also studied Paro, a therapeutic baby harp seal robot developed in Japan. When tested in a residential care facility for older adults in New Zealand, Paro proved reliable, easy to use and comforting and calming for residents.

But there are still hurdles to widespread adoption. Robots are expensive and must be recharged periodically. Most require a connection with a monthly service fee.  

“It’s still very challenging to build a reliable robot for a price that people are willing to pay for it,” said Broadbent.

Experts note that robots and other AI-powered devices will also benefit older adults in many significant ways they may not see. Rogers expects that “back of house” robots will handle more and more time-consuming, repetitive tasks in senior living communities and hospitals. If robots deliver medications or meals in a senior community, for example, staff members are freed up to spend more time engaging directly with residents. 

Herrmann expects AI will also accelerate research in many areas that will benefit older adults. In his own work in hearing and aging, he uses brief audio stories to assess subjects’ hearing. Before, creating the stories meant enlisting writers and voice actors; now they can be generated in minutes using ChatGPT.  

Potential Downsides

The spotlight on AI and ChatGPT has raised concerns about protecting users’ privacy and security. How those issues will be addressed remains unclear, but it’s likely that government regulation, academic research and market forces will combine to design safe systems. Currently, the European Union is negotiating an AI Act to regulate how the technology is developed and deployed. In the United States, the Federal Trade Commission has issued statements with guidelines for AI companies. Academic and research institutions are also shaping the conversation.  

Some researchers worry about the potential for AI to perpetuate ageism, similar to the way social media spreads misinformation. A 2022 World Health Organization policy brief proposed measures to counter that, such as including older people in the design of AI-based technologies and on data science teams; collecting data in an age-inclusive manner; investing in ways to boost digital literacy among older adults and protecting the rights of older users to give their consent and to contest issues.

AI technologies could also empower fraudsters to reach more older adult victims, more quickly and inexpensively, with even more convincing scams. Herrmann led a study that revealed that older adults appear less able to distinguish between AI-generated speech and human speech, compared to younger counterparts.

“These findings suggest that older adults may be at higher risk of being taken advantage of,” he said.  

AI can also generate speech that mimics a specific person’s voice, which offers great promise for older adults who have lost speech capabilities. For example, AI can enable ALS patients to speak with a natural voice much like their own, in contrast to the robotic voice that became Stephen Hawking’s trademark. In the wrong hands, however, the same capability could make it easier for older adults to fall for the so-called “Granny Scam,” in which a caller posing as a grandchild claims to be in trouble and convinces an older relative to send money. 

Living Independently 

In the I-Care project’s current stage, Weakley and her team are tracking human subjects as they move about and perform activities of daily living in an apartment-like lab. Sensors installed in each room track vibrations created by the subject’s movements.

AI interprets these vibrations in precise ways. The sound of a human falling is different from a box or other object falling; information collected by the researchers will “train” the AI to detect the difference. Similarly, the system will track whether the subject spent much of the day in bed or on the couch, took their medication on time or made an unusual number of trips to the bathroom. Ultimately, the data will transmit to a family member or caregiver who can step in if needed. 

The system is unobtrusive (there are no cameras) and passive (the older person need not input any information or wear a device).

Laurie Miller, founder of AgeTechNow.com, predicts systems like I-Care won’t replace human caregivers but will act as caregivers’ eyes and ears when they are not present. 

“That might help reduce instances of ’crisis-based care’ that force families to scramble,” she said. For example, if the system notes the resident using the bathroom frequently at night—something that even a live-in caretaker might otherwise miss—that might suggest a urinary tract infection. The caregiver may be prompted to seek medical help before the problem becomes an emergency. 

If an individual can live the life they want, longer, with less assistance … that’s going to have positive emotional effects for the caregiver as well as the care receiver.

Alyssa Weakley, PhD

Miller, who also owns Apple Care and Companion, a home care agency in Plano, adds that even with current technology—like wearable pendants or the Apple Watch fall-detection app—instances where an older person falls and can’t get up for many hours still occur with alarming frequency. Older users may forget to wear their devices or refuse to call 911 out of embarrassment. Passive AI-based systems would help alleviate these problems. 

“With just a little of this kind of oversight, many older people can live safely at home longer,” she said. 

Weakley hopes the system she’s working on will eventually make life easier for the four million Americans who care for a loved one in another city or state. Had her family had access to I-Care back in 2019, she believes their story would have unfolded differently. 

Today, Weakley’s grandmother is in an assisted living community near her home. Although she resisted the move initially, she’s now happy and well-adjusted. 

“My grandmother would’ve had the potential to stay home longer,” Weakley said. “There would’ve been less crisis care; we would not have had to drop everything as often as we did. And it would’ve made the decision to transition her (to assisted living) easier.” 

Weakley thinks AI-powered innovations will ultimately boost older adults’ sense of self-efficacy and connection. 

“If an individual can live the life they want longer, with less assistance or (with) the kind of assistance they want, in an environment that is as normal as possible, that’s going to have positive emotional effects for the caregiver as well as the care receiver,” she said. 

 

Remote Work: An Underestimated Benefit for Family Caregivers

The option to work remotely makes a huge difference in many situations

As businesses consider whether their employees should work from home, they take into account the needs of those with children but seldom think about caregivers looking after an elderly parent, for example, or a spouse. Yet 20 percent of the nation’s workers are family caregivers. Journalist Joanne Kenen delves into the problem in this article for KFF Health News, which posted her piece on May 19, 2023. The story also ran on USA Today. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

For Aida Beltré, working remotely during the pandemic came as a relief.

She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.

Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of COVID-19, she had to handle it. Community programs for the elderly had shut down.

Even when Beltré switched to a hybrid work role—meaning some days in the office, others at home—caring for her father was manageable, though never easy.

Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.

She quit. “I needed to see my dad,” she said.

In theory, the national debate about remote or hybrid work is one great, big, teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.

But the “return to office” debate has centered on commuting, convenience and child care. That fourth C, caregiving, is seldom mentioned.

That’s a missed opportunity, caregivers and their advocates say.

Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, MSW, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”

After her stepmother died, Beltré moved her father into her home in Fort Myers, FL, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.

The option to work remotely is no substitute for federal action on things like a national long term care policy and family leave.

She’s also not alone. About one-fifth of US workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year—an amount that’s almost certainly gone up since the report was released nearly a decade ago.

Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out—only to the grocery store and church, and even then, she’s constantly checking on her dad.

“This is the story of my life,” she said.

Workplace flexibility, however desirable, is no substitute for a national long term care policy, a viable long term care insurance market or paid family leave, none of which are on Washington’s radar.

President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers, outlining how federal agencies can help and offering road maps for the private sector.

Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.

So that leaves it up to families.

Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.

But there are countless scenarios in which the option to work remotely is an enormous help.

When a disease flares up. When someone is recuperating from an injury, an operation or a rough round of chemo. When a paid caregiver is off, or sick or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.

“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy, who now runs a consulting firm and was able to work from her dad’s home as needed.

Caregivers who quit their jobs lose pay, benefits, Social Security and retirement savings.

That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.

Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.

As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.

For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.

A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.

In Lincoln, NE, Sarah Rasby was running the yoga studio she co-owned, teaching classes and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother and other family members spent hour after hour at her side.

Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.

“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.

Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security and retirement savings.

Most people able to work from home have jobs that are computer-based.

“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t—and they may lose health insurance and other benefits.”

But given the high cost of home care, the sparse insurance coverage for it and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.

At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.” 

Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”

Yet even with COVID’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only one in four private businesses had some or all of their workforce remote last summer—a drop-off from 40 percent in 2021, the second pandemic summer. Only about one in 10 workplaces are fully remote.

And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.

But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.

New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”

She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”

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.”

 

The Cure Can Be Worse Than the Disease 

Older people are more at risk for cancer—and for side effects from cancer drugs

Older people are seldom included in clinical trials of drugs and other therapies, which means that, when doctors treat older cancer patients, too often they have to make decisions about what to do with little evidence from trials to go on. Journalist Jyoti Madhusoodanan explores the problem in this story, originally published by the digital magazine Undark on July 6, 2023. Her reporting was supported in part by a fellowship from the Gerontological Society of America, the Journalists Network on Generations, and the Silver Century Foundation. 

In October 2021, 84-year-old Jim Yeldell was diagnosed with stage 3 lung cancer. The first drug he tried disrupted his balance and coordination, so his doctor halved the dose to minimize these side effects, Yeldell recalled. 

In addition, his physician recommended a course of treatment that included chemotherapy, radiation and a drug targeting a specific genetic mutation. This combination can be extremely effective—at least in younger people—but it can also be “incredibly toxic” in older, frail people, said Elizabeth Kvale, MD, who is a palliative care specialist at Baylor College of Medicine and also Yeldell’s daughter-in-law.

Older patients are often underrepresented in clinical trials of new cancer treatments, including the one offered to Yeldell. As a result, he only learned of the potential for toxicity because his daughter-in-law had witnessed the treatment’s severe side effects in the older adults at her clinic.

This dearth of age-specific data has profound implications for clinical care, as older adults are more likely than younger people to be diagnosed with cancer. In the United States, approximately 42 percent of people with cancer are over the age of 70—a number that’s poised to grow in the years to come—and yet they comprise less than a quarter of the people in clinical trials to test new cancer treatments. Those who do participate are often the healthiest of the aged, who may not have common age-related conditions such as diabetes or poor kidney or heart function, said Mina Sedrak, MD, a medical oncologist and the director of the Cancer and Aging Program at the University of California, Los Angeles.

For decades, clinical trials have tended to exclude older participants for reasons that range from concerns about preexisting conditions and other medications to participants’ ability to travel to trial locations. As a result, clinicians have little way of being certain that approved cancer drugs will work, as predicted in clinical trials, for the people most likely to have cancer. This dearth of data means that older cancer patients must decide if they want to pursue a treatment that might yield fewer benefits—and cause more side effects—than it did for younger people in the clinical trial.

This evidence gap extends across the spectrum of cancer treatments—from chemotherapy and radiation to immune checkpoint inhibitors—with sometimes dire results. Many forms of chemotherapy, for example, have proven to be more toxic in older adults, a discovery that came only after the drugs were approved for use in this population. “This is a huge problem,” Sedrak said. In an effort to minimize side effects, doctors will often tweak the dose or duration of medications that are given to older adults, but these physicians are doing this without any real guidance.

Despite recommendations from funders and regulators and extensive media coverage, not much has changed in the past three decades. 

“We’re in this space where everyone agrees this is a problem, but there’s very little guidance on how to do better for older adults,” Kvale said. “The consequences in the real world are stark.”

Chemotherapy causes potentially life-threatening side effects in about half of patients over 65 who have advanced cancer. 

Postapproval studies of cancer drugs have helped shed light on the disconnect between how these drugs are used in clinical trials and how they are used in clinics around the country.

For example, when physician and cancer researcher Cary Gross, MD, of Yale University set out to study the use of a new kind of cancer drug known as an immune checkpoint inhibitor, he knew that most clinicians were well aware that clinical trials overlooked older patients. Gross’ research team suspected that some doctors might be wary of offering older adults the treatments, which work by preventing immune cells from switching off, thus allowing them to kill cancer cells. “Maybe they’re going to be more careful,” he said, and offer the intervention to younger patients first.

But in a 2018 analysis of more than 3,000 patients, Gross and his colleagues found that within four months of approval by the US Food and Drug Administration, most patients eligible to receive a class of immune checkpoint inhibitors were being prescribed the drugs. And the patients receiving this treatment in clinics were significantly older than those in the clinical trials. 

“Oncologists were very ready to give these drugs to the older patients, even though they’re not as well represented,” Gross said.

In another analysis, published this year, Gross and his colleagues examined how these drugs helped people diagnosed with lung cancer. The team found that the drugs extended the life of patients under the age of 55 by a median of five months, but only by a month in those over the age of 75.

The evidence doesn’t suggest checkpoint inhibitors aren’t helpful for many patients, said Gross. But it’s important to identify which particular populations are helped the most by these drugs. “I thought that we would see a greater survival benefit than we did,” he said. “It really calls into question how we’re doing research, and we really have to double down on doing more research that includes older patients.”

Most clinical trials no longer have an upper age limit, but older participants are still scarce.

People over the age of 65 don’t fare well with other types of cancer treatments, either. About half of older patients with advanced cancer experience potentially life-threatening side effects with chemotherapy, which can lead oncologists to lower medication doses, as in Yeldell’s case.

There’s a strong connection between the lack of evidence from clinical trials and worse outcomes in the clinic, according to Kvale. “There’s a lot of enthusiasm for these medicines that don’t seem so toxic up front,” Kvale said, “but understanding where they do or don’t work well is key, not just because of the efficacy, but because those drugs are almost toxically expensive sometimes.”

This financial aspect is especially critical, said Gross, because Medicare benefits must cover new cancer treatments that are FDA-approved. “It’s a little bit crazy that Medicare is required to cover these drugs if we don’t know whether they work in the older population,” he said.

Since the earliest reports of this data gap, regulators and researchers have tried to fix the problem. Changes to clinical trials have, in principle, made it easier for older adults to sign up. For instance, most studies no longer have an upper age limit for participants. Last year, the FDA issued guidance to industry-funded trials, recommending the inclusion of older adults and relaxing other criteria, such as measures of kidney function, to allow for participants with natural, age-related declines. Still, the problem persists.

When Sedrak and colleagues set out to understand why the needle had moved so little over the past few decades, their analysis found a number of explanations, beginning with eligibility criteria that may inadvertently disqualify older adults. Physicians may also be concerned about their older patients’ ability to tolerate unknown side effects of new drugs. Patients and caregivers shared these concerns. The logistics of participation can also prove problematic.

“But of all these, the main driving force, the upstream force, is that trials are not designed with older adults in mind,” Sedrak said. Clinical trials tend to focus on survival, and while older adults do care about this, they often have other motivations—and concerns—when considering treatment.

Most clinical trials are geared toward measuring improvements in health: they may track the size of tumors or months of life gained. These issues aren’t always top of mind for older adults, said Sedrak. He said he’s more likely to hear questions about how side effects may influence the patient’s cognitive function, ability to live independently and more. “We don’t design trials that capture the end points that older adults want to know,” he said.

One way doctors can make better decisions in treating older cancer patients is to take into account their biological—rather than just their actual—age. 

As a group, older adults do experience more side effects, and sometimes they are so severe that the cure rivals the disease. In the absence of evidence from clinical trials, clinicians and patients have tried to find other ways to predict how a patient’s age might influence their response to treatment. In Yeldell’s case, discussions with Kvale and his care team led him to choose a less intensive course of treatment that has kept his cancer stable since October 2022. He continues to live in his own home and exercise with a trainer three times a week.

For others trying to weigh their choices, researchers are developing tools that can create a more complete picture by accounting for a person’s physiological age. In a 2021 clinical trial, geriatric oncologist Supriya Mohile, MD, of the University of Rochester and her colleagues tested the use of one such tool, known as a geriatric assessment, on the side effects and toxicity of cancer treatments. The tool assesses a person’s biological age based on various physiological tests.

The team recruited more than 700 people with an average age of 77 who were about to embark on a new cancer treatment regimen with a high risk of toxicity. Half the participants received guided treatment management recommendations based on a geriatric assessment, which their oncologists factored into their treatment decisions. Only half of this group of patients experienced serious side effects from chemotherapy, compared to 71 percent of those who didn’t receive specialized treatment recommendations.

This type of assessment can help avoid both undertreatment of people who might benefit from chemotherapy and overtreatment of those at risk of serious side effects, Mohile said. It doesn’t compensate for the data on older adults that’s missing from clinical trials, but in the absence of that evidence, tools such as geriatric assessment can help clinicians, patients, and families make better-informed choices. 

“We’re kind of going backwards around the problem,” Mohile said. Although geriatric oncologists recognize the need for better ways to make decisions, she said, “I think the geriatric assessment needs to be implemented until we have better clinical trial data.”

Since 2018, the American Society of Clinical Oncology has recommended the use of geriatric assessment to guide cancer care for older patients. But clinicians have been slow to follow through in their practice, in part because the assessment doesn’t show any cancer-specific benefits, such as tumors shrinking or people living longer. Instead, the tool’s main purpose is to improve quality of life. 

“We need more prospective therapeutic trials in older adults, but we also need all of these other mechanisms to be funded,” said Mohile. “So we actually know what to do for older adults who are in the real world.”

Making the Most of the ‘Extra 30’

What will you do with the longer life you can expect to live?

When Bob Evans lost his job in 2009, he began to consider what was next. He’d spent more than 30 years in the horticulture industry, mostly in sales and customer service positions in landscaping and lawn care. 

His wife reminded him that, in his 20s, Evans had wanted to become a nurse but set the dream aside to support the family. 

“It’s too late now,” he replied.

“I don’t think so,” she said. 

So Evans went back to school—in his mid-50s, the oldest person in his class. He earned a nursing degree and got a job as a registered nurse in a hospital. Just as he’d imagined in his 20s, he loved the work. 

People can expect later-in-life pivots, like Evans’ new career, to become more and more common as we live longer, according to the Stanford Center on Longevity. Human life expectancies doubled between 1900 and 2000. Living to age 100 will become commonplace by the middle of the 21st century. 

As more people live to 100, they may alternate time spent on work and career with periods devoted to family or caregiving.

“The 100-year life is here,” according to the Center’s report, The New Map of Life. “We’re not ready.”

Most people still expect life and career to follow the timeline shaped by a 60- or 70-year lifespan, according to the report, viewing the “extra” 20 or 30 years afforded by increased longevity as an extension of retirement and older age. In this model, college and graduate school, childrearing and prime earning years are crammed into the 20s, 30s and 40s. 

That needs to change, according to the report. This unparalleled demographic shift “calls for equally momentous and creative changes in the ways we lead these longer lives.” 

As more people live to 100, the report predicts, life trajectories will become more fluid and more flexible, and multiple transitions over the course of life will be viewed as “a feature, not a bug.” People will shift gears routinely, to new phases of work and career, possibly alternating with periods devoted to lifelong learning or family and caregiving responsibilities. 

Adapting to Change

“As people live longer, they’re realizing that retirement is not a destination, it’s a transition and a time of new beginnings,” said Dorian Mintzer, a retirement coach and coauthor of The Couple’s Retirement Puzzle: 10 Must-Have Conversations for Creating an Amazing New Life Together (2014). “It can be a time to rewire, rejuvenate and revolutionize.” 

Longer lives may lead more people to follow unconventional paths, like that of Jim and Lynda McDevitt of Plano, TX. Now in their early 70s, they’ve pivoted twice in the last two decades. After retiring in the early 2000s from long careers with the Internal Revenue Service, the couple opened a neighborhood wine shop called Corner Wines—and loved it. 

“We liked to say, ‘We’re like Cheers,’ because the shop was a place where everybody knew your name,” Lynda McDevitt said. “Most of the friends we have now, we made at our store.” 

Eventually, the shop’s six-days-a-week schedule began to take a physical toll, and the couple wanted to spend more time with their granddaughter. They sold Corner Wines in 2020. Now they call themselves “officially retired” but continue to stay engaged, providing occasional consulting services and leading “wine-themed” group tours to places like Tuscany and Napa Valley. 

Self-confidence is the key to success when you start a new career or any other new endeavor.

“We had such a passion for wine, we couldn’t let it go,” Lynda McDevitt said. 

Several factors made the McDevitts’ later-in-life transition possible. Both enjoy good health. Pensions from their IRS careers provided a financial base. Wine was their passion, but they’d honed practical skills while at the IRS: the basics of accounting, managing and marketing a business. Both had work experiences that gave them the confidence to start something new: Jim had presented proposals to top officials at the IRS; Lynda had fielded media interviews as an IRS spokesperson. 

That type of confidence is key in embarking on any new career or endeavor, Evans said. Even though he had worked in a very different field before he became a nurse, basic skills—like computer proficiency—buoyed his confidence to tackle the next phase. 

“Computer literacy was a big part of being able to jump back into college in my late 50s, to be able to function and graduate,” he said. “You can’t really stay in the game if you can’t work at a computer at least at a minimum level.” Former co-workers in his previous career who didn’t embrace the computer and internet have had more difficulty adapting, he added.

Along with confidence, a new start takes humility. 

“Assuming the role of novice required … swallowing my pride,” Evans said. That was humbling but necessary to learn the skills to serve patients.

Finding Purpose

In filming her 2022 documentary Lives Well Lived: Celebrating the Secrets, Wit & Wisdom of Age, which aired on PBS, filmmaker Sky Bergman chose interviewees, ages 75 and up, who were resilient, active and engaged—and discovered that all shared a common trait. 

“Everyone had a sense of purpose,” said Bergman, who is professor emeritus of photography and video at Cal Poly State University in San Luis Obispo, CA. “That purpose could change over time, and often did change over time, but that was the common thread.”

A health scare in 2003 helped Mellanie True Hills, 71, of Greenwood, TX, identify her next purpose. She developed a heart blockage, followed by atrial fibrillation (“afib”), which caused her heart to race. Surgery corrected the problem, but at the time, patients had little access to reliable information about afib. After Hills retired from her corporate job, she created a website, StopAfib.org, and began organizing annual patient conferences featuring experts. 

Skills developed over her long career in IT, web development and accounting all came to her aid. But Hills also credits her thirst for knowledge and her lifelong learning habit. 

When you start something new, don’t be afraid to change or to take a risk.

“When I was young, I had a boss who said, ‘Mellanie finds a vacuum and fills it,’” she said. “That is the mindset you need to have to start something new. You see a need and you fill it. It’s also a matter of not being afraid to change. That is hard for some older adults. Not being afraid to take a risk. Risk is the price you pay for opportunity.” 

Jan Gero pushes himself to keep taking risks artistically at the age of 90. After five previous careers—architect, modern dancer, fashion designer, documentary filmmaker and artist—he has reinvented himself as a monologist. Recently, he performed a one-man show, Naked at 90: An Evening with Jan Gero

His daily life is solitary, which he prefers, but he shares a video journal online and hosts The Compulsive New Yorker, a public access cable show from his apartment in New York. 

“I’m basically just saying what’s on my mind,” he said. “A lot of what I’m doing is trying to come to terms with death, because it’s a finality, a biological reality. Every day, I’m kind of asking myself the question, ‘Am I on the path to going down with a smile, rather than a sneer?’” 

Envisioning the Extra Years

Jerry Cahn, an executive coach in New York, recently launched a workshop titled, “Age Brilliantly: Maximize Your Ability to Lead a Fulfilling 100+ Year Life.” It’s not just for executives approaching retirement, however. 

The 30 “extra” years that many will enjoy shouldn’t be viewed as tacked on at the end of life, he said. Those years might be devoted to sabbaticals at any age, to provide breathing space for creative growth. Cahn cited a young professional who left one high-pressure job but postponed the start of his next job to devote four months to travel, including visits to Mount Everest, Nepal and the Camino de Santiago in Spain. 

Cahn added that many executives meticulously plan their finances for retirement and later life but head into their post-career years with vague plans, such as, “I’d like to travel.” 

“That might mean traveling six or seven weeks out of the year,” he said. “But what about the other 45 weeks? They don’t tend to think about that.” 

Mary “Molly” Camp, MD, assistant professor in the department of psychiatry at UT Southwestern Medical Center in Dallas, said more and more of her patients want to talk about how they’ll handle retirement and the second half of life. 

Young people might seek help for transitions—a guidance counselor when choosing a college or a therapist for premarital counseling. But there’s little to guide middle-aged or older people to prepare for the later transitions in life. Camp hopes that’s beginning to change.

“We’re evolving in our knowledge of human development, where we don’t think of adulthood as something you reach and then it plateaus and stays the same,” she said. “Instead, we’re understanding that life changes through lots of different phases, lots of different transitions, including career changes and retirement. It’s not that we turn 55 and everything becomes static.” 

Yet Another Chapter 

The COVID-19 pandemic forced Bob Evans to pivot again in 2020. His age and health issues made it too risky for him to work around COVID patients. He left nursing with plans to eventually return—then discovered that he enjoyed retirement. His wife, an IT recruiter, still works from their home in the Cleveland area, so Evans, 68, handles the household duties, including maintaining their large, landscaped yard, and volunteers with the Cleveland Hiking Club, helping to build a new pavilion at a local park. He looks in often on his father, who’s 93 and lives nearby. He’s developed an interest in family history. 

Just in case, he also keeps his nursing license up-to-date. 

“I’m not sure what the next chapter is going to be,” he said, “But that’s the fun part.” 

An Underestimated Benefit for Family Caregivers

The option to work remotely makes a huge difference in many situations

As businesses consider whether their employees should work from home, they take into account the needs of those with children but seldom think about caregivers looking after an elderly parent, for example, or a spouse. Yet 20 percent of the nation’s workers are family caregivers. Journalist Joanne Kenen delves into the problem in this article for KFF Health News, which posted her piece on May 19, 2023. The story also ran on USA Today. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

For Aida Beltré, working remotely during the pandemic came as a relief.

She was taking care of her father, now 86, who has been in and out of hospitals and rehabs after a worsening series of strokes in recent years.

Working from home for a rental property company, she could handle it. In fact, like most family caregivers during the early days of COVID-19, she had to handle it. Community programs for the elderly had shut down.

Even when Beltré switched to a hybrid work role—meaning some days in the office, others at home—caring for her father was manageable, though never easy.

Then she was ordered back to the office full time in 2022. By then, Medicaid was covering 17 hours of home care a week, up from five. But that was not close to enough. Beltré, now 61, was always rushing, always worrying. There was no way she could leave her father alone so long.

She quit. “I needed to see my dad,” she said.

In theory, the national debate about remote or hybrid work is one great, big, teachable moment about the demands on the 53 million Americans taking care of an elderly or disabled relative.

But the “return to office” debate has centered on commuting, convenience and child care. That fourth C, caregiving, is seldom mentioned.

That’s a missed opportunity, caregivers and their advocates say.

Employers and co-workers understand the need to take time off to care for a baby. But there’s a lot less understanding about time to care for anyone else. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, MSW, chief of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the talk of cradle to grave, she said, “mostly, it’s cradle.”

After her stepmother died, Beltré moved her father into her home in Fort Myers, FL, in 2016. His needs have multiplied, and she’s been juggling, juggling, juggling. She’s exhausted and, now, unemployed.

The option to work remotely is no substitute for federal action on things like a national long term care policy and family leave.

She’s also not alone. About one-fifth of US workers are family caregivers, and nearly a third have quit a job because of their caregiving responsibilities, according to a report from the Rosalynn Carter Institute. Others cut back their hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income each year—an amount that’s almost certainly gone up since the report was released nearly a decade ago.

Beltré briefly had a remote job but left it. The position required sales pitches to people struggling with elder care, which she found uncomfortable. She rarely gets out—only to the grocery store and church, and even then, she’s constantly checking on her dad.

“This is the story of my life,” she said.

Workplace flexibility, however desirable, is no substitute for a national long term care policy, a viable long term care insurance market or paid family leave, none of which are on Washington’s radar.

President Joe Biden gave family caregivers a shoutout in his State of the Union address in February and followed up in April with an executive order aimed at supporting caregivers and incorporating their needs in planning federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a National Strategy to Support Family Caregivers, outlining how federal agencies can help and offering road maps for the private sector.

Although Biden checked off priorities and potential innovations, he didn’t offer any money. That would have to come from Congress. And Congress right now is locked in a battle over cutting spending, not increasing it.

So that leaves it up to families.

Remote work can’t fill all the caregiving gaps, particularly when the patient has advanced disease or dementia and needs intense round-the-clock care from a relative who is also trying to do a full-time job from the kitchen table.

But there are countless scenarios in which the option to work remotely is an enormous help.

When a disease flares up. When someone is recuperating from an injury, an operation or a rough round of chemo. When a paid caregiver is off, or sick or AWOL. When another family caregiver, the person who usually does the heavy lift literally or metaphorically, needs respite.

“Being able to respond to time-sensitive needs for my dad at the end of his life, and to be present with my stepmother, who was the 24/7 caregiver, was an incredible blessing,” said Gretchen Alkema, a well-known expert in aging policy, who now runs a consulting firm and was able to work from her dad’s home as needed.

Caregivers who quit their jobs lose pay, benefits, Social Security and retirement savings.

That flexibility is what Rose Garcia has come to appreciate, as a small-business owner and a caregiver for her husband.

Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrig’s disease. Because of his escalating needs and the damage the pandemic wrought on their San Francisco stone and porcelain design company, she downsized and redesigned the business. They cashed in his retirement fund to hire part-time caregivers. She goes to work in person sometimes, particularly to meet architects and clients, which she enjoys. The rest of the time she works from home.

As it happened, two of her employees also had caregiving obligations. Her experience, she said, made her open to doing things differently.

For one employee, a hybrid work schedule didn’t work out. She had many demands on her, plus her own serious illness, and couldn’t make her schedule mesh with Garcia’s. For the other staff member, who has a young child and an older mother, hybrid work let her keep the job.

A third worker comes in full time, Garcia said. Since he’s often alone, his dogs come too.

In Lincoln, NE, Sarah Rasby was running the yoga studio she co-owned, teaching classes and taking care of her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were intense, even when she was in a rehab center or nursing home. Rasby, their mother and other family members spent hour after hour at her side.

Rasby, who also took on all the legal and paperwork tasks for her twin, sold the studio.

“I’m still playing catch-up from all those years of not having income,” said Rasby, now working on a graduate degree in family caregiving.

Economic stress is not unusual. Caregivers are disproportionately women. If caregivers quit or go part time, they lose pay, benefits, Social Security and retirement savings.

Most people able to work from home have jobs that are computer-based.

“It’s really important to keep someone attached to the labor market,” the Rosalynn Carter Institute’s Kavanaugh said. Caregivers “prefer to keep working. Their financial security is diminished when they don’t—and they may lose health insurance and other benefits.”

But given the high cost of home care, the sparse insurance coverage for it and the persistent workforce shortages in home health and adult day programs, caregivers often feel they have no choice but to leave their jobs.

At the same time, though, more employers, facing a competitive labor market, are realizing that flexibility regarding remote or hybrid work helps attract and retain workers. Big consultant companies like BCG offer advice on “the working caregiver.” 

Successful remote work during the pandemic has undercut bosses’ abilities to claim, “You can’t do your job like that,” observed Rita Choula, director of caregiving for the AARP Public Policy Institute. It’s been more common in recent years for employers to offer policies that help workers with child care. Choula wants to see them expanded “so that they represent a broad range of caregiving that occurs across life.”

Yet even with COVID’s reframing of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found only one in four private businesses had some or all of their workforce remote last summer—a drop-off from 40 percent in 2021, the second pandemic summer. Only about one in 10 workplaces are fully remote.

And remote and hybrid work is mostly for people whose jobs are largely computer-based. A restaurant server can’t refill a coffee cup via Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bedside.

But even in the service and manufacturing sectors, willing employers can explore creative solutions, like modified shift schedules or job shares, said Kavanaugh, who is running pilot programs with businesses in Michigan. Cross-training so workers can fill in for one another when one has to step into caregiving is another strategy.

New approaches can’t come soon enough for Aida Beltré, who finds joy in caregiving along with the burden. She’s looking for work, hybrid this time. “I am a people person,” she said. “I need to get out.”

She also needs to be in. “Every night, he says, ‘Thank you for all you do,’” she said of her father. “I tell him, ‘I do this because I love you.’”

 

How to Preplan Your Own Funeral

And why it’s a really good idea to do that

This is part 2 in our series on funerals. Read part 1 here. 

When Amy Martin’s mother-in-law died last year at the age of 96, the funeral arrangements were easy. Her mother-in-law had discussed her wishes with her two adult children. Everything was specified in writing: the burial plot, the chapel for the funeral service, the hymns to be sung, the scripture to be read, even the brightly colored pantsuit and shoes she wanted to be buried in. 

“She really gave it some care and some thought,” said Martin. “It was done out of love. She didn’t want any of her kids to have anything to worry about.” 

Having seen how smoothly things unfolded, Martin, 66, is glad that she and her husband also have plans in place for their own funerals—with people designated to handle them—especially, given that they don’t have children.  

But the Martins are in the minority. While most people agree that preplanning a funeral is a good idea, only about 15 percent of those over age 40 have prepared plans, according to a 2015 Harris Poll survey for the Funeral and Memorial Information Council.

Why do so few of us make funeral plans? 

“We live in a death-denying culture,” said Joe Reardon, vice president of marketing at Keohane Funeral Home in the Boston area. “We don’t talk about death. We can kill dozens of people in seconds on a video game, but otherwise, death is removed from our presence and our conversation. People die in hospitals, not homes. They’re cremated in a crematorium, with no family members present. It’s as if, ‘If you don’t talk about it, it’s not real.’”

Also, death has no place in a youth-oriented culture that’s averse to emotions like grief, sadness and loss, according to Alan Wolfelt of the Center for Loss and Life Transition. Some families now opt for direct burial or direct cremation, with no viewing, no service and no memorial gathering. Others bypass traditional funerals for festive “celebrations of life.” Wolfelt has even heard some dismiss somber memorial services as “barbaric.” 

“We lack an understanding that there are times in life when it’s appropriate to be sad,” he said. “We want to go around our grief instead of through it. Funerals are critical rites of passage. Rituals help us when words are inadequate. That’s why we’ve had these ceremonies since the time of the Neanderthals.” 

Studies show that a family moves faster through the grief process when a funeral is held.

—Randy Anderson

Procrastination is another factor. If you’re healthy and busy, planning your funeral never rises to the top of your to-do  list. Others avoid planning because, subconsciously, they fear it’ll hasten death. Gail Rubin, blogger and author of A Good Goodbye: Funeral Planning for Those Who Don’t Plan to Die (2010), addresses that fear with a joke: “Talking about sex won’t make you pregnant; talking about funerals won’t make you dead.”  

Reardon says many people neglect planning because they “don’t want to make a fuss,” spurred by a sense of self-deprecation that’s well-intentioned.  

“George Washington wanted a simple burial, with no fanfare, no oration, no state funeral,” he said. “He ended up having over 300 funerals. That’s not what he wanted, but that’s what people needed. America was a fledgling nation. He was a war hero.” 

Funerals are for the living, adds Randy Anderson, a funeral director who teaches funeral psychology at Jefferson State Community College in Birmingham, AL. 

“Psychologically, a funeral gives family and friends a chance to talk about the person,” he said. “Studies show that a family moves faster through the grief process when a funeral is held. We’re not made to grieve alone.” 

Anderson cherishes stories he heard at his own father’s funeral. 

“My father had always kept a $100 bill in his pocket,” he said. “It was his way of being prepared to help people in trouble. At his funeral, I heard so many stories I’d never heard before from people who said my dad had given them $100 after a house burned down or after a death in the family.” 

While many efforts have emerged in recent decades—such as The Conversation Project and Death Over Dinner—to reduce that fear and stigma, and to encourage people to talk openly about death and end-of-life wishes, it seems we have a ways to go before the process is an easier one.

A Big Buy

For many of us, a funeral will be the third-largest purchase we’ll ever make, exceeded only by buying a home or car. In 2021, the national median cost of a funeral with a viewing and burial was approximately $7,848 (or $6,971 for a funeral with cremation), according to a study by the National Funeral Directors Association (NFDA.) 

While homes and cars are typically purchased after comparison shopping and much planning, most funerals are arranged within days after a death, while the planner is in the fog of grief. Within hours of a death, the family must choose a funeral home or otherwise specify a place to send the remains. 

Funerals pose a significant financial burden on many families. When arrangements are made “at need,” the burden is likely to be worse. Studies show that families who’ve discussed final arrangements prior to death incurred much lower costs than families that did not. Without time pressures, and without the presence of raw grief, consumers can ask for less expensive options, compare prices and clearly understand what is required versus what would be nice to have.

“When a person dies, there are about 125 decisions that have to be made almost immediately,” said Anderson, who is also a former president of the NFDA. “Will the deceased be buried or cremated? Where and when will the service take place? Who will speak? What music will be played?” 

Most people making funeral decisions have no experience and no clear grasp of what’s involved. 

All of this happens while the family is grieving and possibly grappling with trauma, family conflict or feelings of guilt, according to Rubin.

“People don’t shop around ahead of need,” she said. “So when somebody drops dead, it’s like, ‘Oh my God, I need a burial plot,’ and ‘Oh my God, I need a funeral.’ And that is not the time to be shopping around if you want to compare prices and to be an informed consumer.”

Most people make these decisions with no experience. Many don’t even have a clear grasp of the basic components involved in funeral arrangements. 

“We’ve had [older adult] clients who assumed they’d prepaid the bulk of the cost of a funeral, because they’d already purchased a cemetery plot,” said Carl Burlbaw, director of the Elder Financial Safety Center at the Senior Source, a nonprofit in Dallas. “They didn’t understand that there’s also the cost of a casket, a vault, opening and closing the grave, not to mention the cost of embalming and a funeral service.   

Preplanning also ensures your wishes are followed and your spiritual or religious beliefs are honored. That helps a family avoid conflicts, according to Richard Paskin, managing partner at Funeralwise.com, a funeral planning website. If a parent dies without having expressed their wishes, he said, “One adult child wants to bury the deceased, another wants to cremate. One wants a no-frills funeral, the other wants a fancy one. With preplanning, you’ve at least taken some of the pressure off the family.”

Preplanning can help family members avoid last-minute scrambling by assembling information, such as details for the obituary or the names of chosen pallbearers. Pre-need planning is also key for solo agers—elders without children or surviving family members, who may not have an obvious heir to step in to handle arrangements.  

Steps in Preplanning

Planning a funeral starts with two basic decisions: First, what do you want to do with your body? Today, families have a wide range of options: a traditional burial, cremation, green burial or burial at sea. 

Secondly, what do you want the funeral service to entail? People may work with a funeral home or turn to online resources, such as Funeralwise.com, to explore their options. The NFDA offers RememberingALife.com, with a list of questions to consider for the funeral service, such as: “What music would you like played? Are there any special readings of poetry, scripture, etc. that you would like to have included? How might the location be decorated to reflect your life? What is the one thing you would want attendees to walk away knowing about you and who you are? Are there any special objects or photos you would want on display?”

Those who are religiously unaffiliated need to think creatively when there’s no church or clergyperson to provide a template for the funeral service, Martin notes. She’s been called on to organize and officiate at funerals for many unaffiliated friends. 

“We gather at houses and bars, yoga studios and dance halls, and parks if the weather permits,” she said. “We bring food to share, cover memory tables with mementoes of our lost loved ones and spread out paper to write our grief. Folks share some songs, some poems, a prayer or two  and multitudes of stories about the deceased.” 

You can prepay a funeral home or buy funeral insurance.

The next step is to estimate the cost and plan how it will be paid. 

Some expenses, such as the cemetery space, may be purchased in advance. Some people choose to prepay for a funeral, which involves making all or most of the decisions about it in consultation with a funeral director, then setting up prepayment, typically in monthly installments made directly to the funeral home. Depending on the plan, prepayment can lock in the price of some of the services or purchases involved in the funeral. 

But buyers beware. Prepaid funeral plans aren’t well-regulated. While the Funeral Consumers Alliance advocates preplanning, it advises extreme caution in prepaying. If considering that option, ask what happens if the funeral home goes out of business, and whether the dollar value of the prepaid plan is transferable to another funeral home should you move before you die. Also, you’ll lose the price guarantee if your funeral ends up at another funeral home. Read the fine print.

Another option to prepare financially is funeral insurance—essentially, a life insurance policy that pays money upon your death to cover funeral, burial and other end-of-life expenses. 

Without prepayment or insurance, the cost of a funeral is typically paid out of the proceeds of the deceased’s estate. 

Informing Your Loved Ones

The final step of funeral preplanning: share your wishes, preferably in writing, with the family member or trusted friend who will be responsible for arrangements. Update them as needed. You can also file your wishes with the funeral home you’ve chosen. 

It is possible to name a specific person to handle your funeral arrangements in your will. However, keep in mind that funeral plans are often made before the will is located. It’s important to let the people in your life know who you chose. It’s also possible to legally designate a funeral agent, a person who will handle your funeral arrangements, according to your wishes. This requires written documentation; laws vary by state. Ask an attorney or a local funeral home director for specific guidance. 

Reardon cautions against expressing wishes “in a vacuum,” without realistic guidance on costs, logistics and applicable laws. He assisted the family of a Boston area man who served at a naval base near the Gulf of Mexico. The man wanted his ashes scattered on a beach there, thinking that would be an easy option for the family. 

“But how hard is it to fly everyone to Texas, get the permits to carry the remains and then scatter them on the beach?” Reardon said. “What if not everyone could afford it?”  The man’s simple wishes proved to be a headache. 

Finally, in addition to mapping out your own plans, it’s important to encourage family members to express their wishes. That’s not an easy discussion, but Remembering A Life offers a page on how to start the conversation. 

One Last Howl

Having seen how helpful planning is, Amy Martin has made detailed plans for her own funeral. But hers won’t look anything like her Methodist mother-in-law’s funeral. 

She and her husband made plans to be cremated, with some of their ashes to be scattered at their Unitarian church’s memorial garden. A prepaid, permanent brass plaque there will memorialize them. Because nature has always been central to her spirituality, Martin designed an outdoor ritual to distribute her remaining ashes, with instructions to ensure it’s done in an environmentally responsible way. She has chosen the music and readings. Also, she wants attendees to howl when they scatter her ashes —something she’s had mourners do at friends’ funerals where she’s served as the officiant. 

“Howling is a way to let out pent up emotional energy,” she said. 

Planning also assures Martin that her earth-based spirituality will be honored at her funeral.

“To me, it’s a matter of caring for the people who will be left behind,” she said. 

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.”

Green Burials and Other Nontradional Ways to Honor the End of a Life

There are many different options now for that last goodbye

This is part 1 in a our series on funerals. Read part 2 here.

Near the end of her mother’s life, Barrie Page Hill began thinking about the funeral and the best way to honor her mother.  

“My mom was a wildlife artist and very into nature,” Hill said. “She was happiest when she was sitting by a babbling brook or looking out at a mountain.” 

From conversations, Hill knew her mother wanted a simple funeral but did not want to be cremated. When Hill learned about green burial—with a biodegradable shroud or casket, no embalming and no concrete vault—that seemed like a good fit. But when she tried to make plans, she said, “it was problematic.” 

No cemeteries in the Dallas area, where she lives, allowed green burial. The nearest green cemetery was in Houston. When she inquired at a funeral home, the director tried to “upsell” her toward a more elaborate casket and grave. Hill gave up on going green. 

Overwhelming Choices

Those contemplating funeral arrangements for themselves or a family member now have many choices. In addition to traditional burial or cremation, families may choose options like green burial, composting, burial at sea or donating the body to medical science. 

With more choices, families can plan funerals that better reflect a deceased person’s values or passions. However, more choices can also make the decision process more complicated, even overwhelming. And, as Hill discovered, those who want nontraditional options may face roadblocks. 

That’s because there’s a disconnect between what many consumers want and what the funeral industry offers, according to Darren Crouch, CEO of Passages International, which supplies sustainable items like willow caskets and biodegradable urns to funeral homes. 

“The funeral industry is a relatively traditional industry that has done things a certain way for generations,” he said. “When a death occurs, people are not in a good state. They’re not asking the right questions. Because funerals have time constraints, decisions get made quickly. Without advanced planning, the deceased person—who might have driven a hybrid vehicle, worn organic clothing and eaten organic produce all their life—could easily end up pumped with embalming fluids and buried in a metal casket in a concrete vault.” 

Eco-Friendlier Options 

When someone dies, surviving loved ones must make two basic decisions: what to do with the body (funeral directors call it the “disposition”) and the particulars of the viewing, funeral and/or memorial service. 

The death-care traditions of some religious groups are inherently eco-friendly. For example, for traditional Jewish and Islamic funerals, bodies aren’t embalmed; instead, they are placed in simple wood caskets and buried within one or two days.  

For many others, green burial is appealing because it offers a less expensive option with less impact on the environment, compared to traditional burial. Bodies are buried in biodegradable shrouds or in caskets made of willow, plain wood or cardboard. Green burial grounds generally do not accept embalmed bodies, although some make exceptions for newer, more eco-friendly embalming fluids. To preserve the natural landscape, most don’t allow headstones, but some do permit ground-level stone markers. 

Prices for green burials vary widely by region and the type of green burial site, according to the Funeral Consumers Alliance. A grave site and interment in a green burial ground typically ranges from $1,000 to $4,000. The biggest cost advantage of going green: instead of an expensive metal casket, embalming and a vault, the only cost is a biodegradable casket or shroud. Some burial grounds don’t even require any sort of container. 

A lot of families express interest in green burial, but few end up choosing that route, according to Joseph Reardon, vice president for community development and advance planning for Keohane Funeral Home in the Boston area. Keohane was the first funeral home in Massachusetts certified by the Green Burial Council but it faces a big obstacle: the nearest green burial ground is in Maine. The Green Burial Council estimates that there were 340 certified green burial cemeteries in the United States in 2021. 

Many traditional cemeteries are beginning to set aside space for those who want greener options. However, outdated local and state laws are hindering the growth of dedicated green burial grounds. No state laws explicitly prohibit green burial, but existing laws are tailored to the traditional burial model. For instance, some states require a large endowment fund to establish a new cemetery; that’s cost prohibitive and unnecessary for a cemetery that will be kept in its natural state and won’t need mowing or upkeep.  

Some people donate their body to a medical school because they’re disenchanted with the traditional death industry. 

Green burial isn’t the only eco-friendly option. Emerging alternatives include natural organic reduction, which composts a body into soil, and alkaline hydrolysis (also called aquamation or liquid cremation). In organic reduction, which costs about $5,000, the body is placed in a receptacle along with wood chips, straw or other organic material, and will turn into soil after about four weeks. (Farmers use a similar process to compost livestock.) Alkaline hydrolysis, which costs about $3,500, involves placing the body in a stainless-steel receptacle and adding a pressurized solution to rapidly decompose it into water. These options aren’t legal in all states. Both methods avoid the emissions and energy use associated with conventional cremation, which costs about $1,500. 

One low-cost and altruistic option is donation of the body to science. Cadavers are essential for teaching medical students or for testing new surgical techniques. Body donation usually does not involve any cost to the family. (If the body is donated to a specific medical school that’s not nearby, there may be a transportation cost.) 

A body may be donated directly to a teaching medical school or through a body donation operation such as ScienceCare. About 20,000 people (or their families) donate their bodies to scientific research and education each year, either “because they want to make their deaths meaningful, or because they’re disenchanted with the traditional death industry,” according to the MIT Technology Review

For people who felt a connection to the water in life, burials at sea can be very meaningful for their loved ones. 

Captain Brad White of New England Burials at Sea assists families who wish to scatter ashes or bury a loved one’s body at sea. Per EPA regulations, a body must be taken out to a depth of 600 feet—about 40 miles off the coast of Massachusetts. The body is wrapped in a biodegradable shroud and weighted with cannonballs. 

“Fewer families are seriously religious these days,” White said. “For some, the ocean is their church.” 

Burial at sea avoids the cost of cremation or embalming, as well as a casket, cemetery plot and vault. However, a burial from a boat large enough to accommodate many mourners can run thousands of dollars, largely due to the high cost of fuel. Full body burials at sea are not new, but they are relatively rare. In 2020, 2,544 Americans were buried at sea, according to data collected by the EPA.

Rise in Cremation

When Reardon started in the funeral business 35 years ago, virtually every local funeral followed the traditional Catholic pattern: the deceased was embalmed and placed in a metal casket for the viewing and funeral, usually presided over by a priest, then buried in a cemetery plot with a concrete vault. 

Today, about half of all funerals at Keohane involve cremation. Nationally, the average is about 57 percent. Many choose cremation because it is less expensive—but it’s not cheap. Funerals with cremation averaged $6,971 in 2021, while those with a viewing and burial cost around $7,848, according to the National Funeral Directors Association (NFDA).  

About three-quarters of Keohane’s clientele still desire some sort of permanent marker to remember loved ones, according to Reardon. Many churches and cemeteries are adding columbaria—above-ground vaults for storing the cremains of the departed—as well as spaces for in-ground burial of cremated remains. 

Scattering cremains in a meaningful spot can be problematic. Some cemeteries offer designated scatter gardens, but in other areas a permit may be required. In bodies of water, the highly alkaline cremains can foster algae blooms. That’s why the EPA requires that cremated remains be scattered so far from land, and it forbids scattering at beaches or in wading pools by the sea. 

Some families find creative ways to handle ashes. Reardon knows a family that used a small amount of a loved one’s ashes to make ink for a memorial tattoo. Cremains can be turned into synthetic memorial diamonds. Parting Stone solidifies cremated remains into smooth stones, usually about 50 to 80 stones for an average-sized person. Families share the stones with loved ones or scatter them. 

“Families are spread out these days,” said Justin Crowe, CEO of Parting Stone. “Previously, you lived and died in the same community and were buried in the local cemetery. That physical location doesn’t carry the same importance anymore.” Crowe noted that he has visited his maternal grandfather’s grave in Ohio only once, but keeps his paternal grandfather’s remains with him at his home in Santa Fe. 

Funeral: the Final Goodbye

Once the burial or cremation is arranged, the next decision is the timing, venue and format of a funeral or memorial service. Once limited to places of worship, funeral homes or chapels, memorial gatherings are moving outdoors and to nonsacred places that were meaningful to the deceased.

With a bit of creativity, a funeral can be meaningful and reflect the person’s life without necessarily being costly. NFDA past president Randy Anderson recalled a funeral at his funeral home in Alexander City, AL. The woman loved to cook, so her signature recipe for teacakes was published in a pamphlet, and teacakes were offered after the service. 

Because more and more Americans identify as “nones”—having no religious affiliation—some funeral homes provide certified celebrants to assist families with no religious affiliation in crafting a meaningful ceremony. The NFDA also offers RememberingALife.com, an extensive website with ideas for funeral planning. 

Just as hospice has moved dying from the hospital to the home, a small but growing movement is encouraging families to move the funeral to the home. Family members or death-care guides (also called death doulas) wash the body, wrap it in a shroud and lay it out on a platform. The family sits vigil for a day or two before the body is cremated or buried.  

Funerals held at home must comply with laws that vary from state to state.

Proponents say that a home funeral provides a more intimate, comfortable setting for family and friends. Mourners may be surrounded with photos, clothing, possibly even the deceased’s favorite chair. There are no hours at home funerals; people can easily sit up all night with the deceased, with more time for reminiscing or meditating on the person’s life. Like green burials, home funerals require advance planning. Laws related to home funerals vary by state. New York state law, for example, requires a licensed funeral director to handle many aspects of final arrangements, including the final disposition of the body. That means the family must pay for a funeral director’s services even for a home funeral. In states without that requirement, families choosing at-home funerals must understand the paperwork requirements normally handled by a funeral director, such as how to file the Certificate of Death. 

Many families skipped or postponed funerals during the pandemic. Some now opt for direct cremation or burial, without holding a viewing or memorial service. However, psychologist Alan Wolfelt of the Center for Loss and Life Transition advises against skipping a memorial service entirely. Sitting with the dead body of a loved one helps survivors confront the reality of their loss. Mourning with friends and family helps gather support. When people fail to grieve properly, he adds, it’s easy to end up “living in the shadow of the ghosts of grief.” 

“There’s a reason why humans of every culture have had funeral rituals for thousands of years,” he said. “They are critical rites of passage.” 

As Green as Possible

By the time her mother died at age 83 in 2018, Barrie Page Hill had finally settled on a plan that felt right. She found a small cemetery in a rural area of Oklahoma, near where her mother grew up. The cemetery overlooks a peaceful valley; her plot is under a tree. Her mother’s parents and grandparents are buried there.

Because her mother’s body had to be transported across state lines from Texas to Oklahoma, by law the body had to be embalmed. A funeral home handled the embalming and transported the body to Oklahoma. Hill, her daughter and husband traveled to the cemetery for a private burial. The body was placed in a simple pine casket and buried in the ground, without a vault. 

Hill is at peace.

“It was as green as I could get it, under the circumstances,” Hill said. “And she’s buried in a very peaceful place. It’s lovely.” 

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.”

A Possible Solution for the Staffing Crisis in Long Term Care

Experts suggest that immigrants could bridge the gap

The nation’s older population is growing, along with the need for long term care, but at the same time, nursing homes are turning away residents because they’re so short of staff. Writing for Kaiser Health News (KHN), journalist Michelle Andrews describes what’s happening and talks to experts who believe new immigrants could help a lot. Her article ran on KHN on February 3, 2023, and also on the Tampa Bay Times.

When Margarette Nerette arrived in the United States from Haiti, she sought safety and a new start.

The former human rights activist feared for her life in the political turmoil following the military coup that overthrew President Jean-Bertrand Aristide in 1991. Leaving her two small children with her sister in Port-au-Prince, Nerette, then 29, came to Miami a few years later on a three-month visa and never went back. In time, she was granted political asylum.

She eventually studied to become a nursing assistant, passed her certification exam and got a job in a nursing home. The work was hard and didn’t pay a lot, she said, but “as an immigrant, those are the jobs that are open to you.”

A few years later, her family joined her, but her children didn’t want to follow her career path. When she was a teenager, Nerette’s daughter, now 25, would ask, “Mom, why are you doing that?” Nerette said. Her daughter considered the work underpaid and too physical.

After many years, Nerette, now 57, left nursing-home work for a job with the Florida local of the labor union SEIU1199, which represents more than 25,000 health workers. As the local’s vice president for long term care, she is keenly aware of the staffing challenges that have plagued the industry for decades and will worsen as aging baby boomers stretch the limits of long term care services.

The United States is facing a growing crisis of unfilled job openings and high staff turnover that puts the safety of older, frail residents at risk. In a tight labor market where job options are plentiful, long term care jobs that are poorly paid and physically demanding are a tough sell. Experts say opening pathways for care workers to immigrate would help, but policymakers haven’t moved.

Already, about one in four direct care workers are foreign-born. 

In the decade leading up to 2031, employment in health care support jobs is expected to expand by 1.3 million, a nearly 18 percent growth rate that outpaces that of every other major occupational group, according to the federal Bureau of Labor Statistics. These direct care workers  include nurses of various types, home health aides, and physical therapy and occupational therapy assistants, among others.

Certified nursing assistants, who help people with everyday tasks like bathing, dressing and eating, make up the largest proportion of workers in nursing homes. In the decade leading up to 2029, nearly 562,000 nursing assistant jobs will need to be filled in the United States, according to a far-reaching report on nursing home quality published last year by the National Academies of Sciences, Engineering, and Medicine.

But as the US population ages, fewer workers will be available to fill those job openings in nursing homes, assisted living facilities and private homes. While the number of adults 65 and older will nearly double to 94.7 million between 2016 and 2060, the number of working-age adults will grow just 15 percent, according to an analysis of census data by PHI, a research and advocacy organization for older and disabled people that conducts workforce research.

Immigrants can play a crucial role in filling those gaps, experts say. Already, about one in four direct care workers are foreign-born, according to a 2018 PHI analysis. 

“We do think that immigrants are critical to this workforce and the future of the long term care industry,” said Robert Espinoza, executive vice president of policy at PHI. “We think the industry would probably collapse without them.”

Nursing homes and other long term care facilities have long struggled to maintain adequate staff. The problem worsened dramatically during the pandemic, when those facilities became hotbeds for COVID-19 infections and deaths. More than 200,000 residents and staff members died during the first two years of the pandemic, representing about a quarter of all COVID deaths during that time.

Unlike some other countries, the United States generally hasn’t made it a priority to attract direct care workers from abroad.

Since March 2020, the long term care industry has lost more than 300,000 jobs, bringing employment to a 13-year low of just over 3 million, according to an analysis of BLS payroll data by the American Health Care Association and the National Center for Assisted Living.

Immigration policies that aim to identify potential workers from overseas to fill long term care job slots could help ease the strain. But unlike other countries that face similar long term care challenges, the United States generally hasn’t made attracting direct care workers from abroad a priority.

“Immigration policy is long term care policy,” said David Grabowski, a professor of health care policy at Harvard Medical School, whose research focuses on the economics of aging and long term care. “If we really want to encourage a strong workforce, we need to make immigration more accessible for individuals.”

Most of the roughly one million immigrants to the United States annually are family members of citizens, though some come in on employment visas, often for highly skilled jobs.

On his first day in office, President Joe Biden proposed comprehensive immigration reform that would have created a pathway to citizenship for undocumented workers and revised the rules for employment-based visas, among other things, but it went nowhere.

“There hasn’t been a lot of interest or political will behind opening up more immigration opportunities for mid- to lower-level care aides such as home health aides, personal health aides and certified nursing assistants,” said Kristie De Peña, vice president for policy and director of immigration policy at the Niskanen Center, a think tank.

The United States is competing with other countries, who also want to attract immigrant workers. 

The Biden administration didn’t respond to requests for comment.

Some local and regional organizations are working to connect immigrants with health care jobs.

Ascentria Care Alliance provides social services, refugee resettlement and long term care services in five New England states. With state and private philanthropic funding, the organization is beginning to help refugees from Ukraine, Haiti, Venezuela and Afghanistan get the supportive services they need—language, housing, child care — to enable them to take health care jobs at Ascentria’s long term care facilities and those of health care partners.

The group has long helped refugees resettle and find jobs in traditional settings like warehouses or retailers, said Angela Bovill, president and CEO of Ascentria, which is based in Worcester, MA. “Now we’re looking at what it would take to move them into health care jobs,” she said.

The alliance is applying to the Department of Labor for a grant to scale up the program. “If we get it right, we’ll build a pathway and a pipeline to move at the fastest rate from immigrant to effective health care worker,” Bovill said.

Some long term care experts say the United States can’t afford to drag its feet on putting policies in place to appeal to immigrants.

“We’re competing with the rest of the world, other countries that also want these workers,” said Howard Gleckman, a senior fellow at the Urban Institute.

Staffing shortages are forcing nursing homes to turn away new residents.

Canada, for instance, is going all in on immigration. In 2022, it welcomed more than 430,000 new permanent residents, the most in its history. Immigration accounts for almost 100 percent of Canada’s labor force growth, and by 2036 immigrants are expected to make up 30 percent of the population, the government said.

In the United States, immigrants account for about 14 percent of the population, according to an analysis of census data by the Migration Policy Institute.

Canada’s Economic Mobility Pathways Pilot aims to identify and recruit refugees who have skills Canadian employers need. In January, after visiting a refugee camp in Kenya, recruiters offered jobs in Nova Scotia to 65 continuing care assistants. 

In a December survey of 500 US nursing homes, more than half said staffing shortages have forced them to turn away new residents.

These staffing challenges, said industry representatives, are likely to become an even heavier lift, with more closed facilities, units or wings, after the Biden administration announced last year that it would establish minimum nursing home staffing requirements. 

A government mandate alone won’t solve long-standing problems with inadequate training, pay, benefits or career advancement, experts said.

“Young people aren’t going to clean 10 to 15 patients for $15 an hour,” Nerette said. “They’ll go to McDonald’s. We need to face that reality and come up with a plan.”

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.

 

Living with Disabilities

More than a third of older Americans have at least one

Until a few years ago, doctors told Deanna Mann, 85, she was “healthy as a horse.” She lived independently in an apartment and enjoyed playing bridge with friends twice a week. Then one leg suddenly swelled up. The other followed soon after. Mann was diagnosed with lymphedema, a treatable but incurable condition that made it difficult to walk. 

She started to fall. After hitting her head in a fall, she moved to an assisted living community and used a walker to get around. But Mann still hoped she could get back on her feet and eventually go home. Then her daughter pointed out that wasn’t likely. 

“That did me in,” she said. Mann struggled with depression. On bad days, she cried. She felt totally alone. She grieved over the loss of her old life. “You’ve got to give up the life you have before,” she said. It wasn’t easy. 

Many older adults will eventually deal with a temporary or permanent, age-related disability, whether it’s vision loss, hearing loss or reduced mobility, or issues such as fatigue or constant pain due to chronic illness. 

“It can be traumatic,” said Kimberly Knight, director of the caregiver support program at the Senior Source, a nonprofit social services agency in Dallas. “It can mean giving up a level of independence that the person has been accustomed to for some time.” 

A New View 

By some estimates, as many as 60 million Americans of all ages are living with a disability. About 36 percent of people aged 65 and older report having at least one disability, according to the US Census. Rates of disability increase greatly in very old age; the majority of those 85 or older are unable to perform all activities of daily living without help.

Many resources offer practical tips for older adults trying to adapt their home environments and daily routines to compensate for disabilities. But newly disabled older adults must also learn how to cope emotionally and psychologically, according to Asma Jafri, MD, chair of the department of family medicine at the University of California, Riverside (UCR) and part of UCR’s Aging Initiative, a group of researchers focused on aging-related issues. 

“If you adjust emotionally, you are more likely to thrive and to succeed in maintaining function,” Jafri said. “If a person doesn’t adjust well, that may trigger a negative cycle.” Feelings of depression or discouragement can lead to withdrawal from social connections and a less active lifestyle, which in turn leads to even more loss of function. 

To cope, older adults facing disability must adopt a new view of themselves and the world. 

“Living in a world not built for us can be an occasion for resourcefulness and a source of frustration,” wrote Rosemarie Garland-Thomson, PhD, a professor of English and bioethics at Emory University. “Living with a disability can be hard work … the burden of stigma can be heavy; managing psycho-emotional changes can be wearing; traversing the breach between us and the nondisabled can attenuate our energy and resources.” 

Building Resilience

One key factor in coping is resilience—the ability to persist, bounce back and flourish when faced with stressors, according to Arielle Silverman, PhD, research director at the American Foundation for the Blind. In her previous position at the University of Washington Medical Center, Silverman was lead researcher for a study of resilience in people with multiple sclerosis. When participants were asked about what resilience was, and what made them resilient, their answers seemed paradoxical. 

“People would talk about having a fighting spirit, not giving up and continuing to fight,” she said. “At the same time, those same people talked about acceptance and how important that was. It does seem like you need both—the drive to keep participating in life, but at the same time, accepting the fact that you do have a disability and some things are going to change.” 

That study identified facilitators of resilience, such as coping skills (like humor, flexibility and optimism), social connections, a sense of meaning and purpose, proactive planning for practical needs, and overall physical wellness.

The study also named barriers to resilience: burnout, negative thoughts and feelings, social challenges (friends’ lack of understanding, for example), stigma and physical fatigue. Study participants talked about thriving, not just surviving. “It’s not dwelling on what you can’t do, it’s relishing what you can do,” as one 56-year-old male participant shared.

Becoming disabled “doesn’t necessarily mean that the quality of your life will diminish, but it does mean that you have to take active steps to accommodate the disability,” said Silverman. 

Staying Engaged

Eve Bostic admired the resilience of her mother, Mary, 91, as health problems gradually took away her ability to walk. Even as her disabilities progressed, Bostic said, her mother outperformed doctors’ predictions time and again. 

“My mother is a very determined woman,” Bostic said. “She compensated by doing other things that her body still could do.”

When she could no longer bend over or kneel, Mary found a way to keep gardening. She read gardening magazines, ordered plants and seeds and directed family and friends who stepped in to help, pointing out what to plant where. 

Bostic credits her mother’s resilience to her life experiences. Mary contracted polio in her teens; doctors predicted she would never walk again. She worked hard at rehabilitation and proved them wrong. By the 1980s, Mary began experiencing post-polio-syndrome symptoms that led her to use a cane, then a four-prong cane, then a walker, then a rollator and finally a wheelchair and scooter. Mary fought each step of the way, maintaining what function she could, until a stroke in 2022 left her bedridden. 

Taking a cue from her mother, Bostic, 63, pushes herself to stay active. After falling and breaking her leg a year ago, Bostic is back to carrying water down long flights of stairs to the chickens and goats she keeps in her yard on a mountainside in West Virginia. Bostic could give up the livestock—she doesn’t rely on them for income—but she’s determined to stay at it as long as she can. She’s more careful too. 

“I don’t trip lightly down those steps anymore,” she said. “But I think it’s important to keep doing this. Use it or lose it.” 

Leon Miller, 89, likes to joke that he went “from the outhouse to the penthouse” over the course of his life—growing up in a poor family, getting an education and establishing a successful career as an architect. That determination, honed over a lifetime, keeps him going even after two dozen surgeries on his knees and legs, including two knee replacements. He can’t climb stairs or walk around the block; he uses a walker to get around at home. 

“My heart, lungs and kidneys are all fine, but my bones and joints are shot,” he said.

Finding ways to help others can contribute to a feeling of empowerment for someone with disabilities 

He misses golfing, but he’s outlived most of his golf buddies anyway. He’s retired but continues to manage his real estate investment in a shopping center. He taught himself to trade stocks online. 

“I’ve learned to focus on the future, as opposed to what I’ve lost and what’s in the past,” he said. 

Miller does grouse a bit about his adult children, who urge him to move into an assisted living community due to safety concerns. That’s a common situation, but a 2019 article in the Innovations in Aging journal, “Meeting Challenges of Late Life Disability Proactively,” encourages care providers and family members to give “greater attention to the adaptive potential of older adults.” 

“Disability and aging … have both been stigmatized, yet also have the potential to reveal human strengths and resiliency,” the authors wrote. Proactive adaptations—such as finding ways to help others or looking for solace and meaning in spirituality—can contribute to an older adult’s sense of empowerment and psychological well-being. 

Those two strategies have helped Nancy Becher, 65, live with a long list of disabilities, some due to a car accident nine years ago and some related to chronic diseases including Crohn’s, glaucoma and diabetes. 

After struggling with depression for more than a year—“I just wanted to die,” she said—she found hope in a support group and in her faith. She learned to focus on what she can still do. She can’t hike any more, but she can sit outside her camper along the Tennessee River and enjoy nature. She also found purpose through a nonprofit she founded called Invisible Warriors, which supports people with “invisible” disabilities, such as chronic pain or fatigue due to autoimmune disorders, which can severely restrict the lives of people who may otherwise look perfectly healthy. 

“I realized that my disabilities were life-changing but not life-ending,” Becher said. 

Becher’s experience reflects psychology’s concept of “secondary gains,” according to Pamela Garber, a therapist in private practice in New York. 

“Something that’s negative, that’s a struggle, can have a benefit also,” she said. Finding and appreciating those secondary gains can help older adults adjust to a new normal. 

The Importance of Being Independent

Research suggests that an older adult’s emotional adjustment to disability also relates closely to the person’s perceptions of dependence and independence. For many people, losing independence represents their biggest fears. They might accept limits on their activities but fight any change that makes them feel dependent. 

If older adults can maintain control over how much assistance they need, they’re likely to feel less helpless and more able to cope, according to a 2000 study. Caretakers and family members can support an older adult by understanding and respecting the person’s need for independence, however they may define that, even if it involves a measure of risk. 

That’s how Deanna Mann is beginning to adjust—by finding ways to maintain her sense of independence and feel more at home in her assisted living community. She decorated her apartment to her liking, without help. 

She negotiated a compromise when staff members wanted to assist her with showering: the aide waits outside her bathroom door, at the ready if needed, while she showers in private. She helps other residents with more severe disabilities when she can. She’s working with a home care assistant who provides a treatment that’s reducing the swelling in her legs, preventing further loss of function. She sounds upbeat as she talks about making new friends. 

“I think each person in his own way has got to find their own way … where you’re not in depression, and where you’re looking at your situation as not necessarily all bad,” she said. “I have my down days and my good days. I’m still not fully adjusted, but I’m as adjusted as I think I’m going to get.” 

Is Dying at Home Becoming the New Normal?

More and more people are ending their lives in familiar surroundings

Journalist Phillip Reese taps into a nationwide trend, as it’s playing out in California, exploring the reasons behind it and some of the consequences. Kaiser Health News posted his article on January 26, 2023. It was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. Reese’s story also ran on the Sacramento Bee. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

The COVID-19 pandemic has spurred a surge in the proportion of Californians who are dying at home rather than in a hospital or nursing home, accelerating a slow but steady rise that dates back at least two decades.

The recent upsurge in at-home deaths started in 2020, the first year of the pandemic, and the rate has continued to climb, outlasting the rigid lockdowns at hospitals and nursing homes that might help explain the initial shift. Nearly 40 percent of deaths in California during the first 10 months of 2022 took place at home, up from about 36 percent for all of 2019, according to death certificate data from the California Department of Public Health. By comparison, US Centers for Disease Control and Prevention data shows that about 26 percent of Californians died at home in 1999, the earliest year for which data on at-home deaths is accessible in the agency’s public database.

The trend is amplified among California residents with serious chronic conditions. About 55 percent of Californians who died of cancer did so at home during the first 10 months of 2022, compared with 50 percent in 2019 and 44 percent in 1999. About 43 percent of Californians who died of Alzheimer’s disease in the first 10 months of 2022 did so at home, compared with 34 percent in 2019 and nearly 16 percent in 1999.

Nationwide, the share of deaths occurring at home also jumped in 2020, to 33 percent, then rose to nearly 34 percent in 2021. Nationwide data for 2022 is not yet available. 

COVID’s early, deadly sweep across California does not in itself explain the increase in at-home death rates; the vast majority of people who have died of COVID died in a hospital or nursing home. Instead, medical experts said, the surge—at least initially—appears to coincide with sweeping policy changes in hospitals and nursing homes as caregivers struggled to contain a virus both virulent and little understood.

The sweeping bans on in-person visitation in hospitals and nursing homes, even to the bedsides of dying patients, created an agonizing situation for families. Many chose to move a loved one back home. 

“It was devastating to have Mom in a nursing home and dying, and the only way you can see Mom is through the window,” said Barbara Karnes, a registered nurse who has written extensively about end-of-life care.

No one ever says, ‘I want to die in the ICU.’

At the same time, fears of COVID exposure led many people to avoid hospitals in the first years of the pandemic, in some cases neglecting treatment for other serious conditions. That too is thought to have contributed to the rise in at-home deaths.

Those who specialize in end-of-life care say it is no surprise the trend has continued even as visitation policies have eased. They said more people simply want to die in a comfortable, familiar place, even if it means not fighting for every second of life with medical interventions.

“Whenever I ask, ‘Where do you want to be when you breathe your last breath? Or when your heart beats its last beat?’ no one ever says, ‘Oh, I want to be in the ICU,’ or ‘Oh, I want to be in the hospital,’ or ‘I want to be in a skilled nursing facility.’ They all say, ‘I want to be at home,’” said John Tastad, coordinator for the advance care planning program at Sharp HealthCare in San Diego.

Meanwhile, the physicians who specialize in the diseases that tend to kill Americans, such as cancer and heart disease, have become more accepting of discussing home hospice as an option if the treatment alternatives likely mean painful sacrifices in quality of life.

“There’s been a little bit of a culture change where maybe oncologists, pulmonologists, congestive heart failure physicians are referring patients to palliative care earlier to help with symptom management, advanced care planning,” said Pouria Kashkouli, MD, associate medical director for hospice at UC Davis Health.

The trends have created a booming industry. In 2021, the California Department of Health Care Access and Information listed 1,692 licensed hospice agencies in its tracking database, a leap from the 175 agencies it listed in 2002.

When families choose hospice care at home, they do the bulk of the caregiving themselves.

That much growth—and the money behind it—has sometimes led to problems. A 2020 investigation by the Los Angeles Times found that fraud and quality-of-care issues were common in California’s hospice industry, a conclusion bolstered by a subsequent state audit. Gov. Gavin Newsom signed a bill in 2021 that placed a temporary moratorium on most new hospice licenses and sought to rein in questionable kickbacks to doctors and agencies.

When done correctly, though, home hospice can be a comfort to families and patients. Hospice typically lasts anywhere from a few days to a few months, and while services vary, many agencies provide regular visits from nurses, health aides, social workers and spiritual advisers.

Most people using hospice are insured through the federal Medicare program. The amount Medicare pays varies by region but is usually around $200 to $300 a day, said Kai Romero, MD, chief medical officer at the nonprofit Hospice by the Bay. 

To find quality end-of-life care, Andrea Sankar, PhD, a professor at Wayne State University and author of  Dying at Home: A Family Guide for Caregiving, recommends seeking out nonprofit providers and having a list of questions prepared: How often will nurses visit in person? In what circumstances do patients have access to a physician? What help will be available for a crisis in the middle of the night?

While hospice providers offer crucial guidance and support, families need to be prepared to shoulder the bulk of the caregiving. “It really takes a pretty evolved family system to be able to rally to meet all of the needs,” said Tastad at Sharp HealthCare.

Several end-of-life experts said they expect the proportion of Californians choosing to die at home to keep climbing, citing a variety of factors: medical advances will make it easier for patients to receive pain management and other palliative care at home; telemedicine will make it easier for patients to consult doctors from home; and two powerful forces in American health care—insurance companies and the federal government—increasingly see dying at home as an affordable alternative to lengthy hospital stays.

Friendships Are Good for Your Health

But making new friends can be challenging in later life

As a human resources executive, Carole Leskin traveled around the world and worked with a diverse group of interesting people. She never married and never had children, but life was full. Then a recession ended her career at age 65. Leskin floundered. 

“I was out of work, without purpose, bored and desperately lonely,” she said. “Sometimes my only human interaction was with someone in line at the supermarket.”

To meet people, Leskin took a class at the Jewish Community Center near her home in Moorestown, NJ. Initial attempts to connect failed; she introduced herself but got nowhere. Finally, she met four women who welcomed her into their group. For years, the group shared countless hours of conversation, lunches and road trips. 

Then, one by one, all the other women in the group died. Leskin developed health problems that left her homebound. Once again, she was lonely and desperate for connection. 

Leskin’s struggle is not only common, it has massive societal implications. A growing body of research points to the importance of social connections for the health and well-being of older adults. 

“Isolation can be as deadly as obesity and smoking,” said Kasley Killam, MPH, a social scientist and the executive director of Social Health Labs, a nonprofit working to address loneliness and social connection. “In fact, its health consequences cost Medicare an estimated $6.7 billion each year. We need to take better care of older adults’ social well-being.”

Social connections were the key predictor of a long, healthy and happy life in the Harvard Study of Adult Development, which began in 1938 and closely followed hundreds of men over the course of their lives. Those in the study who were more socially connected to family, friends and community were happier, physically healthier and lived longer than those who were less connected. Other research links loneliness with greater sensitivity to pain, suppression of the immune system, diminished brain function and less effective sleep. The evidence is so compelling that one expert called loneliness a public health emergency. 

Since the pandemic, American men are in the middle of a “friendship recession.”

“Loneliness kills,” said Robert Waldinger, MD, the Harvard study’s director. “And the sad fact is that at any given time, more than one in five Americans will report that they’re lonely.”

Lane McCullough, 61, was one of those lonely people. After his divorce last year, he found himself spending his evenings alone at home, bingeing Netflix or staring at the walls. He tried going to a few bars; that proved expensive and fruitless. He tried a singles group; people in the group didn’t seem friendly. 

Tips for Making Friends 

Get involved. Volunteer. Sign up for classes. Join a book club. Pick activities that meet regularly, so it’s easier to get to know people. 

Choose activities that coincide with genuine interests. If you don’t find an organization or group that interests you, start something new.

Expand your interests. Try an activity you’ve never tried before. 

Be brave. Smile. Start a conversation. If you sense a connection, extend an invitation to meet again. 

Expect some trial and error. Don’t take it personally if your efforts are rebuffed. Give it a second or even a third try. 

Be patient. Making friends takes time. Fitting a new friend into your life takes time. It’s worth the effort. 

“It’s difficult to get and keep friends,” he said. “Where do you go? What do you do? There’s no guide for this.”

While that’s not strictly the case—books and resources on friendship abound—it’s true that loneliness affects men more than women, according to Killam. One study of over 46,000 people in more than 200 countries found that loneliness was more common among men. Post-pandemic, American men are in the middle of a friendship recession.” Men’s social circles have shrunk since 1990, and the percentage of men without any close friends has risen.      

Friendships are especially critical for older adults who don’t have adult children or close family members. Wendl Kornfeld, 74, and her husband have no children. Having cared for their aging mothers, she saw how vulnerable people can become later in life. That inspired her to start Community as Family, an education model for older adults who don’t have children or family, at her synagogue in New York. As participants met weekly to learn to navigate their older years, they naturally formed supportive relationships. After eight years as a group, the members sit shiva together, hold house keys for each other or pick each other up from the hospital. Now Kornfeld advises other nonprofits as they adopt the approach. 

Making the first move may be daunting or awkward. That’s inevitable. “If you really want friends, you have to be motivated,” said Kornfeld. “You’re going to have to get outside your comfort zone. It won’t come naturally. Friends need to be replenished, because life takes them away from you.”

Challenging at Any Age

Making friends is hard for adults of any age. As a young mother in the 1990s, Marla Paul remembers filling out an emergency card for her daughter’s school shortly after a move to a Chicago suburb. There were spaces for three neighborhood contacts; she didn’t have a single name to write. That inspired Paul to write an essay for the Chicago Tribune, which sparked a flurry of letters from readers who shared her struggle, and ultimately led Paul to write a book, The Friendship Crisis: Finding, Making, and Keeping Friends When You’re Not a Kid Anymore (2005). 

Almost 30 years later, Paul says it’s still challenging to make friends but in different ways. Her daughter is grown; social connections through her daughter’s school or activities have long disappeared.

Sometimes the best way to make friends is to get involved in local groups that are doing things that interest you.

“When you’re older, you have to be more proactive,” she said. “If you’re retired, you are not organically seeing people every day on a job. You have to work harder to find people. Virtually every new life chapter has the potential to disrupt friendships: moving, leaving an office to stay home, divorce, the death of a spouse, retirement, illness.”  

That was the case for Mina Gupta, 82, a retired microbiologist. She had no trouble making friends until she and her husband moved from the Dallas area to a suburb of Seattle in 2013. The new home was closer to grandchildren, but their social network was thousands of miles away in Texas. 

“It was horrible,” she said. “I knew almost everyone in the Indian community in the Dallas area. Here, I just couldn’t seem to connect with people.”

For Gupta, the solution was getting involved. She began volunteering at a hospital nursery, snuggling the babies of mothers with substance addictions, which led to friendships with the staff and fellow volunteers. Later, to meet fellow gardeners, she put an invitation on NextDoor (a neighborhood-based social media platform) and started a garden club. 

Getting involved also helped Donna Bearden, 75, after she and her husband relocated to Loveland, CO, 10 years ago. She found friends by joining and teaching classes in photography, art and writing. It wasn’t hard to meet people, given that those in the classes shared her passions. Bearden adds that she also learned to advocate for herself in group situations to make sure she was connecting. She wears a hearing aid; if she can’t hear well, she’ll ask people at her book club to speak up. 

“Hearing loss can make you feel so isolated and left out,” she said. “It didn’t come easy, but I’ve learned to be a little bit assertive.” 

Fishing for Friends

Showing up—whether for a singles group, a volunteer job or a community college class —is a first step but doesn’t automatically lead to friendships. Converting acquaintances into friends requires intentional effort.

“Friend-finding is like fishing,” writes Hope Kelaher, LCSW, in Here to Make Friends: How to Make Friends as an Adult (2020). “Casting out the line and, several reels and hooks in, waiting for a bite. And some days … you don’t catch anything at all.” 

“Fishing” for friends is more effective when approached with intentionality and positivity. Research shows that people who think friendships happen organically—based on luck—are lonelier, according to Marisa Franco, author of Platonic: How Understanding Your Attachment Style Can Help You Make and Keep Friends (2022). She advises friend-seekers to beware the “liking gap.” Research shows that, when strangers interact, they’re often more liked by the other person than they assume. By contrast, thinking positively becomes a self-fulfilling prophecy. 

“When people do assume others will like them, they tend to become warmer, friendlier and more open,” Franco writes. 

Developing friendships takes time and effort. One study estimates it takes 50 hours of interaction just to make a casual friend, and 200 hours of time together to create a close friendship. 

Persistence, along with trial and error, finally paid off for Lane McCullough. He found another singles group, Phase 2 Singles 50+, aimed at fostering friendships, not dating. The group boasts a busy calendar of outings and several subgroups based on different interests. Now McCullough goes out at least twice a week, one night playing pickleball and the other socializing. 

“It’s a great group,” he said. “We just clicked.” 

If you’re open to friendships with people who aren’t your age, you’ll have more potential friends to connect with.  

Social scientist Killam urges older adults to cultivate habits that strengthen “social muscles.” Studies show that people feel happier when they spend at least 10 minutes on the phone a few times a week or connect with people five times a day, whether in person, with a text or an email. 

Kelaher also advises older adults to look beyond their peers for their pool of possible new friends. She cites an acquaintance in her 70s who chatted with younger neighbors and occasionally babysat; now there’s a steady stream of visitors of all ages in her home. 

When people are open to friendships of any age, “it really expands the universe of potential friends,” adds Irene Levine, a former clinical psychologist and the author of Best Friends Forever (2009). Intergenerational friendships also offer extra benefits; younger friends may have different perspectives and may appreciate the wisdom and experience of an older person. 

In addition, be open to places to find connections: join an exercise class, alumni group, group travel, volunteer project, or local fan groups for sports teams. If possible, select activities that meet several times or on a regular basis, advises Franco. Faces will grow familiar, increasing the chances of connection.

Online Lifelines

Happily, the Internet opened options for connecting, virtually and in person. During the COVID-19 pandemic, many older adults learned to use new technology platforms, like Zoom and FaceTime. Apps like Meetup, Friender and BarkHappy (for dog lovers) help connect people with common interests. Neighborhood platforms also offer a place to start. 

A word of caution: take care when venturing online to meet people, says Thomas Preininger, LCSW, a counselor at the Ecumenical Center, a mental health agency in San Antonio, TX. Online scammers target lonely older adults: he knows several who lost tens of thousands of dollars to fraudsters who posed as empathetic friends, gained their trust and then asked for money. 

“If someone asks you for money, cut them off right away,” he advises.

For Carole Leskin, now 77, virtual connections became her lifeline after her friends died. She’s housebound due to a stroke and heart failure but has new friends all over the world. She connects via Facebook and through her blog posts on sites like Jewish Sacred Aging. Virtual acquaintances gradually evolved into close friends; she keeps in touch regularly via Zoom, texts and email. Recently, Leskin talked for hours on the phone with a friend in Melbourne, Australia. They’ve never met in person but share common interests in nature and in wetlands, in particular. 

“There is something about this kind of communication that allows for greater sharing,” she said. “It is more thoughtful, uninterrupted and open. In a way, I am closer to these people than I was to my now deceased friends.” 

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.

What Happens When Someone Dies without a Will?

Things can go wrong in ways families never imagine

Years later, the story still haunts attorney Jennifer Cona. 

A man—in his 70s and in good health—retained her to draw up a will. He wanted to bequeath his sizable estate to his grandson and to a few charities. He did not want to leave anything to his two grown children, who lived out of state and never called or visited. 

“The grandson was very close and did everything for him,” said Cona, an elder attorney in Melville, NY. “While we were going back and forth over some of the details, [the client] died suddenly of a massive stroke.”

The will was not yet signed. The two grown children didn’t attend his funeral, but they inherited the entire estate. The grandson got nothing. 

As Cona’s story shows, without a valid will, a deceased person’s wishes mean nothing. The laws of the state where the person lived dictate who inherits—and often, not in ways that many assume. 

Lorie Burch, an attorney in Dallas, puts it this way for her clients, “If you don’t have a will, the state of Texas has one for you.” 

Why No Will? 

Most people know they need a will. Yet two out of three Americans don’t have one, according to the 2022 Wills and Estate Planning Study by Caring.com. 

Why not? Of those without a will, the study reported, one of three think they don’t have enough assets to leave behind. 

For many others, it is simply a matter of procrastination. Chris Krupa Downs, an attorney in Plano, TX, calls it the “Scarlett O’Hara philosophy.” 

“When it comes to making the decisions involved in creating a will, many people would prefer ‘to think about that tomorrow,’” she said. 

Some assume that, because family members get along, their heirs will do the right thing. Or they believe their family situation is uncomplicated and the assets will transfer easily.

Others don’t want to think about death. 

“There’s this weird human element that clouds people’s judgment,” said Cona. “It’s almost like they’re superstitious. They think that, as soon as they sign their will, they’ll go out and get hit by a bus.” 

Unpleasantly Surprised

Most people don’t appreciate how difficult the probate process can be for surviving family members when there’s no will in place—or the many unexpected ways things can go wrong. When a person dies without a will, everything that the deceased person owned falls into intestate succession: the state takes control of the estate and doles it out to the heir or heirs, according to the state’s laws of intestacy.

With blended families, succession becomes more complicated. And state law doesn’t take into account whether family members are estranged or whether an heir might have a drug addiction or a gambling problem.

“A lot of people are shocked to learn that without a will, all the decisions are made according to state law,” said Burch. 

Before the estate is distributed, there’s a probate process to identify the dead person’s heirs. Sometimes, secrets are exposed. Burch is following a case where a man, a member of the LGBTQ community, died without a will. Unbeknownst to his husband, the deceased man had fathered a child—now grown—in a one-time sexual encounter he’d had decades earlier. After his death, the daughter came forward and DNA testing proved paternity. With a will, the man likely would’ve left his entire estate to his husband. But without a will, by Texas law, biological children may have a claim on a parent’s estate. 

And now the whole story is a matter of public record.

“When there’s no will, family secrets come out, and the process is super invasive,” said Burch. 

When the deceased has adult children from a previous marriage or gave up a baby for adoption long ago, and there’s no will, things can get complicated. 

Blended families often create surprises, too, depending on the state’s laws. 

“If you have children from a different marriage, it complicates things,” said Catherine Forte, an attorney in Plano. “With blended families, the estate often doesn’t go where you think it’s going to go.” 

In Texas, for example, in situations where there is no will, it’s not uncommon for adult children from a previous marriage to take an interest in the home occupied by the surviving spouse. The widow or widower is legally entitled to stay in the home, but if the stepkids want to cash in, they may pressure that person to sell. 

Downs adds that when people die without a will, often their life history dies with them. 

“I’ve had cases where someone died, and there’s no one who knows what relationships they had in life,” she said. “There’s no one who knows the facts and the history of the person’s life.”

Duncan Webb, an attorney in Plano, shared the story of a middle-aged woman who died without a will. While she had many friends and professional associates, the woman never married and had no children. She had been tight-lipped about her family situation. When she died, her body lingered at the morgue for weeks because no family member claimed the body. Neighbors stepped forward to help; a court-appointed attorney ultimately located an uncle, who made the funeral arrangements. Her estate was divided between the uncle and a nephew she’d never met. 

Similarly, Burch knows of a woman who died without a will, and who had had a baby decades earlier and given the baby up for adoption. Her spouse was aware of the child’s existence but had no idea when or where the child was born or the child’s gender. The court insisted that the child be tracked down to give his or her consent before the assets could be distributed. 

“Now, how do you find that child?” Burch said. 

Where’s the Money?

When there’s no will, finding the deceased’s heirs is one issue. Finding the assets is another. That was the problem facing Kashif Ahmed when his father died in Pakistan in 2001. More than 20 years later, he’s still tying up loose ends of the estate. 

“As wise and as organized as he was, my father just never got around to creating a will or documenting his assets and where they were,” Ahmed said. “And to make matters worse, he had multiple assets in multiple countries and continents.” 

Ahmed knows how to handle money—he is a wealth manager in Bedford, MA, and a lecturer in estate planning at Suffolk University and Bentley University. But the process was still a nightmare. Some of his father’s assets were in nations where, even with a judge’s order, bureaucrats demanded bribes before they’d handle the paperwork to transfer the assets to Ahmed’s name. He spent countless hours combing through his father’s papers and trying to track down other assets. 

An ATM receipt, found in his father’s trouser pocket, led Ahmed to look for a bank account in Switzerland. After sending certified letters to virtually every bank in Switzerland, he eventually learned that his father had only withdrawn cash from an ATM machine while passing through the Zurich airport. There was no Swiss bank account. 

Your Brain, on Grief 

Even with a valid will in place, grieving family members often find the probate process frustrating and emotionally exhausting. Without a will, it can be overwhelming. 

Sophia Dembling struggled with this after her husband, Tom Battles, died suddenly at age 59 in 2020 without a will. The situation seemed straightforward—the couple had been married for almost 30 years and had no children.

But her effort to access a few thousand dollars in a bank account, along with some uncashed checks, both in his name, has been a nightmare. Dallas County, TX, where she lives, required her to complete a small estate affidavit to prove she’s the rightful heir. That meant compiling a list of all his possessions and obtaining notarized documents from her elderly in-laws, who lived in Chicago and didn’t want to venture out during the pandemic.

The instructions on the county’s website were confusing. She made mistakes; each time she refiled the affidavit, she got something else wrong. Dembling could use the money but still can’t get access. Hiring an attorney would likely cost more than the total amount. 

“It was so overwhelming and heart-wrenching,” she said. “Just listing his possessions— the process was loaded with sentiment and sadness and love and regret.”

Normally, she thinks the process might be manageable, but having to tackle it while grieving was too much. 

One minor error can invalidate an online will or one that’s handwritten.

“There is something called ‘grief brain,’” said Dembling, who blogs about coping as a widow at Psychology Today.  “In early grief, your thinking is really fuzzy. There’s a lot of neurological energy going into just dealing with the loss.” 

Another area where a will is essential: providing for minor children. Without a will, the state will decide who cares for the children. It’s possible for children to end up in foster care. Estate planning—usually a will as well as a trust—is also critical for parents of adult children with special needs.  

“If you don’t do your planning, the child can lose government benefits, like Medicaid or disability payments,” Downs said. “In some cases, the wait lists to get the benefits are years long.”

Attorneys warn that there are also situations where a will may exist, but it’s not valid, or it doesn’t apply. Wills must be updated whenever a family situation changes due to birth, death, divorce or marriage, or when moving to another state. And some designations can override a will. For example, the beneficiary named in a life insurance policy will get the money regardless of what the will says. Ditto for bank or stock accounts where the owner has named a payable-upon-death (POD) beneficiary, which overrides what’s in the will.

Webb and Burch also advise caution with do-it-yourself options, like online wills or holographic wills. (Holographic wills are handwritten wills created by the testator and are legal in about two dozen states, with varying requirements.) Webb has handled cases where one seemingly minor error or omission—an insufficient number of witnesses to the will, for example—rendered a holographic will invalid. 

Family Fighting

Webb often hears from clients who assume they don’t need a will because their families get along. They trust their spouse or children to divide the estate fairly and peacefully. He’s witnessed plenty of horror stories that contradict that. He cited a case of a man who died with a large estate. He had two daughters and no will. 

“The daughters seemed to get along OK when he was alive, but after he died, they fought like cats and dogs and ended up spending $150,000 in legal fees,” he said. “When you and your spouse are still alive, the relationship between children is often muted. The jealousies and envy stay below the surface. Once the parents are gone, all these things come to the forefront.”

Even when succession laws clearly state who gets what, Webb added, fights can arise. For example, if there’s no will, all the heirs must agree on who will serve as executor, and that alone can start a war. 

Cona adds that a will not only helps ward off conflicts, it can also help keep families together after a death. 

“The best thing you can do for the next generation is to take care of estate planning,” she said. “It’s the best gift you can give your loved ones.”

Nursing Home Patients Caught in a Squeeze

What happens when Medicare Advantage plans aren’t an advantage

It’s happening more and more often: Medicare Advantage plans are telling nursing home patients it’s time to go home because their insurance coverage is ending, and at the same time, their doctors are telling them it’s too soon to go. Journalist Susan Jaffe investigates the situation here for Kaiser Health News. Her story was posted on KHN’s website on October 4, 2022, and also ran on Fortune. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

After 11 days in a St. Paul, MN, skilled nursing facility, recuperating from a fall, Paula Christopherson, 97, was told by her insurer that she should return home.

But instead of being relieved, Christopherson and her daughter were worried because her medical team said she wasn’t well enough to leave.

“This seems unethical,” said daughter Amy Loomis, who feared what would happen if the Medicare Advantage plan, run by UnitedHealthcare, ended coverage for her mother’s nursing home care. The facility gave Christopherson a choice: pay several thousand dollars to stay, appeal the company’s decision or go home.

Health care providers, nursing home representatives and advocates for residents say Medicare Advantage plans are increasingly ending members’ coverage for nursing home and rehabilitation services before patients are healthy enough to go home.

Half of the nearly 65 million people with Medicare are enrolled in the private health plans called Medicare Advantage, an alternative to the traditional government program. The plans must cover—at a minimum—the same benefits as traditional Medicare, including up to 100 days of skilled, nursing home care every year.

But the private plans have leeway when deciding how much nursing home care a patient needs.

“In traditional Medicare, the medical professionals at the facility decide when someone is safe to go home,” said Eric Krupa, an attorney at the Center for Medicare Advocacy, a nonprofit law group that advises beneficiaries. “In Medicare Advantage, the plan decides.”

Mairead Painter, a vice president of the National Association of State Long-Term Care Ombudsman Programs, who directs Connecticut’s office, said, “People are going to the nursing home, and then very quickly getting a denial, and then told to appeal, which adds to their stress when they’re already trying to recuperate.”

The health plan can determine how long someone is in a nursing home typically without laying eyes on the person.

—Jill Sumner

The federal government pays Medicare Advantage plans a monthly amount for each enrollee, regardless of how much care that person needs. This raises “the potential incentive for insurers to deny access to services and payment in an attempt to increase profits,” according to an April analysis by the Department of Health and Human Services’ inspector general. Investigators found that nursing home coverage was among the most frequently denied services by the private plans and often would have been covered under traditional Medicare.

The federal Centers for Medicare & Medicaid Services [CMS] recently signaled its interest in cracking down on unwarranted denials of members’ coverage. In August, it asked for public feedback on how to prevent Advantage plans from limiting “access to medically necessary care.”

The limits on nursing home coverage come after several decades of efforts by insurers to reduce hospitalizations, initiatives designed to help drive down costs and reduce the risk of infections.

Charlene Harrington, a professor emerita at the University of California-San Francisco’s School of Nursing and an expert on nursing home reimbursement and regulation, said nursing homes have an incentive to extend residents’ stays. “Length of stay and occupancy are the main predictor of profitability, so they want to keep people as long as possible,” she said. Many facilities still have empty beds, a lingering effect of the COVID-19 pandemic.

When to leave a nursing home “is a complicated decision because you have two groups that have reverse incentives,” she said. “People are probably better off at home,” she said, if they are healthy enough and have family members or other sources of support and secure housing. “The resident ought to have some say about it.”

Jill Sumner, a vice president for the American Health Care Association, which represents nursing homes, said her group has “significant concerns” about large Advantage plans cutting off coverage. “The health plan can determine how long someone is in a nursing home typically without laying eyes on the person,” she said.

The problem has become “more widespread and more frequent,” said Dr. Rajeev Kumar, vice president of the Society for Post-Acute and Long-Term Care Medicine, which represents long term care practitioners. “It’s not just one plan,” he said. “It’s pretty much all of them.”

As Medicare Advantage enrollment has spiked in recent years, Kumar said, disagreements between insurers and nursing home medical teams have increased. In addition, he said, insurers have hired companies, such as Tennessee-based naviHealth, that use data about other patients to help predict how much care an individual needs in a skilled nursing facility, based on her health condition. Those calculations can conflict with what medical teams recommend, he said.

For some Advantage plan members, going home is not practical or safe. 

UnitedHealthcare, which is the largest provider of Medicare Advantage plans, bought naviHealth in 2020.

Sumner said nursing homes are feeling the impact. “Since the advent of these companies, we’ve seen shorter lengths of stays,” she said.

In a recent news release, naviHealth said its “predictive technology” helps patients “enjoy more days at home, and health care providers and health plans can significantly reduce costs.”

UnitedHealthcare spokesperson Heather Soule would not explain why the company limited coverage for the members mentioned in this article. But in a statement, she said such decisions are based on Medicare’s criteria for medically necessary care and involve a review of members’ medical records and clinical conditions. If members disagree, she said, they can appeal.

When the patient no longer meets the criteria for coverage in a skilled nursing facility, “that does not mean the member no longer requires care,” Soule said. “That is why our care coordinators proactively engage with members, caregivers and providers to help guide them through an individualized care plan focused on the member’s unique needs.”

She noted that many Advantage plan members prefer receiving care at home. But some members and their advocates say that option is not always practical or safe.

Patricia Maynard, 80, a retired Connecticut school cafeteria employee, was in a nursing home recovering from a hip replacement in December when her UnitedHealthcare Medicare Advantage plan notified her it was ending coverage. Her doctors disagreed with the decision.

“If I stayed, I would have to pay,” Maynard said. “Or I could go home and not worry about a bill.” Without insurance, the average daily cost of a semiprivate room at her nursing home was $415, according to a 2020 state survey of facility charges. But going home was also impractical: “I couldn’t walk because of the pain,” she said.

It isn’t unusual for members of Medicare Advantage plans to have to file appeals repeatedly. 

Maynard appealed, and the company reversed its decision. But a few days later, she received another notice saying the plan had decided to stop payment, again over the objections of her medical team.

The cycle continued 10 more times, Krupa said.

Maynard’s repeated appeals are part of the usual Medicare Advantage appeals process, said Beth Lynk, a CMS spokesperson, in a statement.

When a request to the Advantage plan is not successful, members can appeal to an independent “quality improvement organization,” or QIO, that handles Medicare complaints, Lynk said. “If an enrollee receives a favorable decision from the QIO, the plan is required to continue to pay for the nursing home stay until the plan or facility decides the member or patient no longer needs it,” she explained. Residents who disagree can file another appeal.

CMS could not provide data on how many beneficiaries had their nursing home care cut off by their Advantage plans or on how many succeeded in getting the decision reversed.

To make fighting the denials easier, the Center for Medicare Advocacy created a form to help Medicare Advantage members file a grievance with their plan.

When UnitedHealthcare decided it wouldn’t pay for an additional five days in the nursing home for Christopherson, she stayed at the facility and appealed. When she returned to her apartment, the facility billed her nearly $2,500 for that period.

After Christopherson made repeated appeals, UnitedHealthcare reversed its decision and paid for her entire stay.

Loomis said her family remains “mystified” by her mother’s ordeal.

“How can the insurance company deny coverage recommended by her medical care team?” Loomis asked. “They’re the experts, and they deal with people like my mother every day.”

Celebrating Aging

Older adults are beginning to invent their own rites of passage

After her mother passed away, Jeanette Leardi invited female friends to her home for a special gathering. It wasn’t exactly a memorial service; many attendees never knew her mother. Instead, it was a healing ritual for Leardi. The group lit candles, played music and took turns reading favorite poems or writings. Then Leardi took a cup, which her mother had drunk from as a baby, poured milk into it and drank it.

Looking back, 25 years later, Leardi said the gathering helped her through a momentous transition: the end of years spent as her mother’s caregiver, and the transition from being a daughter toward her own elderhood.

“That was so impactful for me,” said Leardi, now 70, a social gerontologist and community educator in Portland, OR. “When someone dies, the person who was the caregiver loses a kind of identity.” The ritual helped her move forward. 

Seasons of Life

While there are many milestones to celebrate for youth and young adults—graduations, weddings, bar or bat mitzvahs, first communion or confirmation ceremonies—older adults have few. 

Adulthood involves many transitions. Parents send children off to college and become empty nesters. Professional careers come to an end at retirement. Older adults sell a beloved home to downsize to a condo or a retirement community. Longtime roles—such as caregiver for a spouse or parent—conclude; new roles begin. These transitions are life-altering, yet most pass uncelebrated.

“Becoming a grandparent is an incredible transition in someone’s life,” said Martha Pollack, 68, an adjunct professor at Touro College Graduate School of Social Work in New York. “There should be an opportunity to acknowledge that with some kind of a celebration.” 

When milestones slip by unnoticed, feelings of isolation and disconnection may remain. Rites of passages help people attend fully to key moments in life spiritually, psychologically and socially, according to Ronald L. Grimes, author of Deeply into the Bone: Re-inventing Rites of Passage (2000). 

“If people don’t mark a transition, they are unlikely to remember it,” he said. “Marking a transition with a ritual makes it memorable and gives it new shape.”  

Rituals Matter 

Why are there so few significant celebrations for older adults? For much of human history, few people lived past what is today considered middle age. Given that many rites of passage evolved over thousands of years, there has been relatively little time for such observances to emerge for older people. Ageism factors in too. Many milestones in older adulthood involve at least some element of loss; on the surface, it may appear they aren’t worth commemorating.  

“Society assumes older age is nothing but downhill and deterioration and decline, so there’s nothing to celebrate,” Leardi said. 

Still, it’s important to mark milestones. Rituals create a sense of completion—a closing of one phase of life and the beginning of another—and provide time for reflection. Gatherings allow friends and family to offer recognition and support during a transition. Rites of passage provide a sense of stability and continuity and tie people to their heritage, ancestry and religious faith or spirituality. They can impart a sense of meaning and purpose. 

“Rituals help us find and define the patterns and cycles of our individual lives that might otherwise seem to be random happenings if viewed separately,” wrote Abigail Brenner, MD, in Psychology Today.

More Than a Birthday 

Kathy Armey remembers seeing the colorful quinceañera gowns in the windows of shops in her neighborhood in Dallas. Quinceañeras are 15th birthday parties for young women, celebrated in Mexico and among Hispanic Americans. 

Armey yearned for an excuse to wear one of those beautiful, elaborate gowns. So she bought herself a gown and a tiara, and, after a year of planning, hosted a 50th birthday bash she called her “cincuentanera.” Friends and family members traveled from far and wide for a night of dancing, food, a DJ and an elaborate cake. 

“My view was, I’m not going to ever be any younger than 50 after this,” she said. “There’s no point moaning and groaning about getting older, so I might as well make it a celebration.” 

Now 58, Armey still enjoys looking through the book she assembled of photos from her cincuentenera. The event helped maintain ties with friends and family who might have otherwise fallen out of touch. She would like to do something big for her 60th birthday too, but she hasn’t yet decided what that will be. 

Some adults are marking age milestones by inventing or re-inventing rites of passage for their later years. A growing number of Jewish adults, for example, are choosing to celebrate second bar or bat mitzvahs. Unlike adult bar or bat mitzvahs for an adult who never had the celebration as a teen, second bar mitzvahs typically take place at age 83, a nod to 70 (an expected lifespan, per Psalms 90:10 in the Bible) plus 13 (the age of a typical bar/bat mitzvah.)

“Reaching age 70, then, can be considered a new start—and therefore, age 83 would be the equivalent to reaching [bar/bat] mitzvah age again,” wrote Howard Lev in Reform Judaism’s blog. “This is also a great way to keep older congregants involved in synagogue life.” 

Unlike the rite celebrated with young teens, second bar/bat mitzvahs come toward the end of a long life. 

“This is not about your parents telling you to do something, it’s not about Hebrew school, it’s not about the culmination of these years of study and all the pressure and expectations associated with it,” said Avi Winokur, a Philadelphia rabbi. “It’s really a free-will situation…. it is an opportunity for older adults to reaffirm their commitment to Judaism and bring their loved ones together.” 

Celebrating a ‘Cancerversary’ 

Many older adults, sooner or later, face health issues that may require arduous periods of treatment or rehab. Bonnie Annis, 64, a writer and photographer, urges fellow survivors to mark a “cancerversary” (an anniversary of a key moment in their cancer journey, such as the completion of chemotherapy) by throwing a party, completing a “bucket list” activity, planting a tree, taking a vacation or getaway or simply spending some time in reflection. 

Annis recently traveled to Israel to mark the eighth anniversary of her breast cancer surgery. It was the first overseas trip she’d taken since the surgery. Because she has breast prostheses, she was apprehensive about getting through security, but it worked out and the trip went well. 

Annis has celebrated each anniversary with some new adventure. 

“I can’t imagine letting one single year postcancer pass without celebrating,” she said. “Being able to celebrate is a way of saying to cancer, ‘I’m still here! You didn’t win.’ By celebrating, you acknowledge the difficulties you’ve overcome and shift your focus toward the future.” 

Reinventing Milestone Moments 

Retirement is a big deal. And while workplaces do often hold celebrations for retiring colleagues, many are low-key, even dreary affairs.

“Retirement parties often feel sort of sheepish,” said Kitty Eisele, 59, host of Twenty Four Seven, a podcast about caregiving. “You have people standing around with plastic cups of wine and a couple of managers remembering the [retiring person’s] glory days.” 

That kind of celebration doesn’t fit the retirees Eisele knows, whose plates are full of passion projects they couldn’t tackle while working full time. 

“I feel like these celebrations should be amazing,” she said. “They should feel more like launch parties.”

Because he’s an expert in ritual, years ago author Grimes was called on to design a celebration for a colleague, Bob, who was retiring. He devised an elaborate, joyful and serious affair, including a cord-cutting ritual to mark the end of Bob’s career at the university. Grimes distributed a printed program for the event; students and retired colleagues offered reflections during the time for “Words of Appreciation, Recollection and Bedevilment.” 

“The rite, like Bob himself, is still remembered and talked about,” Grimes wrote. 

There are ways to commemorate the change when you downsize and leave a longtime home.

Another big transition that usually goes unmarked: leaving a longtime family home to downsize or move to assisted living. 

“Many [older adults] struggle with leaving behind a home where they’ve created so many memories,” said Missy Buchanan, author of Joy Boosters: 120 Ways to Encourage Older Adults. “Trying to decide what to take, what to sell and what to give away can be overwhelming.” 

Buchanan proposed a few ways to better commemorate the transition: videotape the family home, room by room, before moving, with the outgoing resident(s) narrating about treasured memories or precious items in each room. At the new home, invite family, friends and perhaps a clergy person for a “Bless this New Home” gathering.

A Turning Point

In retrospect, Leardi sees the ceremony after her mother’s death as a turning point that ultimately led to her current work. A few years later, after her father passed away, she went back to school to earn a degree in gerontology. Today, she writes and speaks to empower older people to identify and share their wisdom with others.

Caregiving showed her how little older adults are valued in the community. Though she didn’t know it at the time, the healing ritual “was the beginning of the recognition that there was something I needed to be doing about all this,” she said. 

Leardi would like to see communities mark a rite of passage for elderhood—the point when a person reaches the threshold of older age, however that might be defined. Some Unitarian churches, as well as goddess and earth-based spirituality groups, have experimented with that, with rituals such as croning and saging ceremonies, to mark the arrival at elderhood for older women and men respectively. 

Even solitary rituals, or simple acts, can make transitions more meaningful, Professor Pollack noted. The day after retiring from her longtime job at a social services agency, she joined a new gym. Regular visits to the gym now give her days structure and happiness.

You need to be inventive to celebrate unconventional milestones.

“Even if it’s not a formal ritual, we can take small, personal steps to mark these transitions,” she said.

Pollack believes that if more transitions in later life were celebrated in positive ways, it might help combat ageism. Communal, multigenerational celebrations of rites of passage in older adulthood could help model “how to age successfully and how to take on new roles in life,” she said. 

“That could, in turn, inspire younger people not to be afraid to move on in life. We owe it to our children and our grandchildren to create a positive image of older age, to show them what it means to move forward in life, and the importance of experience and wisdom.” 

For now, older adults who choose to celebrate unconventional milestones need to be inventive and willing to experiment. Grimes thinks it’s worth the effort.

“Rituals are like markers on a forest trail,” he said. “Sometimes those markers could be wrong and could lead you astray, but having no markers is worse.” 

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.”

Older People’s Mental Health Undermined by the Pandemic

But it also taught many where to find help 

In early 2020, Sarah Crouch started a tally on her cell phone: a list of names of family members and friends who died since the pandemic began. As of July 2022, there were 51 names. About half died due to COVID-19. 

“Some weeks there were two deaths of close friends in one week,” said Crouch, 72. “One person would die, and I barely had time to grieve before the next one hit.” 

On top of all that, her father-in-law almost died in November 2020. He spent two weeks in the hospital alone, because visitors weren’t allowed. Around the same time, her husband contracted COVID. Thankfully, both recovered, but with all the stress, Crouch’s own health started to suffer. Her thoughts raced. She couldn’t sleep. 

“I had sudden hearing loss,” she said. “I spent six weeks in bed with vertigo. My body just quit on me. Because of all of that, one of my doctors said, ‘You know what? I think you should probably talk to a counselor.’” 

Crouch was reluctant. She worried therapy was too costly. She’d tried it in the past; it didn’t help. But she took her doctor’s advice and contacted a psychologist. 

Isolation and Loneliness

Crouch wasn’t alone. In the United States at the beginning of 2021, an estimated one in five older adults, ages 50 to 80 were experiencing mental health symptoms, such as depression, anxiety, insomnia or substance abuse, according to the University of Michigan National Poll on Healthy Aging. When asked about the last two weeks before they were surveyed, 28 percent said they had felt depressed or hopeless, 34 percent had been nervous or anxious, and 44 percent had recently felt stressed. Almost two-thirds reported trouble falling asleep or staying asleep, twice the percentage who reported sleep problems in a similar poll in 2017. 

Nora Gravois, a licensed social worker and counselor at the nonprofit Wellness Center for Older Adults in Plano, TX, witnessed these effects of the pandemic firsthand.  

“We got calls from neighbors, church members or family, asking us to check on an older adult who hadn’t opened their curtains for ages, or whose mail was piling up,” she said. “Older adults were isolated, and some didn’t have the emotional resilience to call us for help themselves.” 

Even before the pandemic, older people were at higher risk of social isolation and loneliness than younger age groups. Studies show that loneliness can trigger anxiety, anger and emotional instability or contribute to physical problems like hypertension. For some, the restrictions imposed by the pandemic led to even deeper isolation.

“What we saw in our grief support group was almost like a trauma response,” Gravois said. “Our clients were not able to physically touch or say goodbye to their loved ones at the time of death. Grief and loss became a traumatic experience for them.” 

An Outpouring of Sadness and Worry

Susan Rebillet, a geriatric psychologist in Dallas, saw a dramatic uptick in physician referrals beginning in the summer of 2020. 

“So much had happened,” she said. “On top of the pandemic, there was political turmoil and the Black Lives Matter movement. It was a chaotic time.”  

Some patients needed help from a child or grandchild to connect online with Rebillet, but once they did, there was an outpouring of feelings of grief, loss, sadness and worry. 

“Many people had a real fear of dying themselves or losing someone to the virus,” she said. “There was a lot of information out there that wasn’t helpful or accurate. I told many patients, ‘Do not watch the news 24 hours a day.’” 

Everyone was affected by the disruptions and restrictions of the COVID pandemic, but some older adults were hit especially hard, according to Lisa Murray, a social worker with OhioHealth’s John J. Gerlach Center for Senior Health in Columbus, OH. 

“If you’re an older adult who’s living alone, or who cannot drive because of mobility or cognitive issues, then COVID meant you no longer had access to services that provided transportation,” said Murray. “We saw people falling out of their normal routines that helped sustain their mental health, whether it was going to church or being involved with family dinners.” 

For older people, the psychological work of this life stage is stymied without social connections.

“While depression is not a normal part of aging, there were so many changes during the pandemic that increased the risk of depression,” said Lakshmi Rangaswamy, DO, a geriatrician at OhioHealth Riverside Methodist Hospital in Columbus, OH. 

She added that depression and anxiety in older adults can manifest in unexpected ways. She saw patients during the pandemic with pseudodementia, in which anxiety or depression triggered symptoms that mimicked dementia. 

“In those cases, when we treated the anxiety or depression, the cognitive impairment improved,” she said. 

While the media highlighted concerns about the effects of the lockdown on children and youth during their formative years, Gravois says, “The pandemic was a disruption for older people too, because every stage of life has its own challenges.” 

Gravois cites Erik Erikson’s stages of psychological development, which span the entire lifespan from birth to death. Just as young people must grow and mature in childhood and adolescence, older adults face their own psychological challenges in later life. Retirement, for example, demands that older adults find new ways to contribute and stay engaged, once a career is over. Older people often reflect on their lives and look to find peace with the past, rather than feeling stuck in despair or regret. But without social connections, the work of this life stage gets stymied. 

Janet Pyne, 66, saw that in the spring of 2020, when she retired from her job as an assistant principal in Austin, TX. As they had planned for years, she and her husband, Rick, moved shortly after her retirement to be near grandchildren in the Dallas area. 

Because school was virtual due to COVID, “I never got to tell my co-workers and students goodbye in person,” she said. “It was a sad and depressing way to leave a job I loved.” 

Overcoming Hesitations 

Another complicating factor affected older adults’ mental health during the pandemic: reluctance to seek mental health care. Past research showed that many older adults who need that don’t get it. One 2012 study, for example, showed that 70 percent of older adults with mood and anxiety disorders did not use mental health services.  

But more recent research suggests that the pandemic may have moved the needle. A voluntary survey of nearly 4,000 Medicare recipients, published by eHealth, found that more people were willing to seek mental health care two years into the pandemic. Nearly half (48 percent) were willing to consider talk therapy or another form of mental health care, up from 35 percent pre-pandemic. 

Similarly, the 2021 University of Michigan poll indicated that older adults were now more open to seeking mental health, with 71 percent saying they wouldn’t hesitate to see a mental health professional in the future and 13 percent saying they had talked with their primary care provider about a new mental health concern since the pandemic began. More than 85 percent reported feeling “very comfortable” or “somewhat comfortable,” talking about their mental health.  

“Most older adults do feel comfortable discussing their mental health and understand that it’s an important component of overall health,” said Lauren Gerlach, DO, a geriatric psychiatrist at Michigan Medicine who worked with the University of Michigan poll team. 

Among those who were unsure or who had reservations about seeking help, the most common reasons cited were the belief that therapy or other interventions would not help, feeling embarrassed and the cost. (According to the eHealth survey, many older adults don’t know that Medicare provides mental health care benefits.)

Gerlach sometimes sees a perception among older patients “that they should just be able to pull themselves up by their bootstraps and get better on their own.” When she encounters hesitancy, she tries to normalize patients’ experiences of anxiety, depression or other symptoms. 

“I tell them that many people are experiencing significant mental health symptoms, and explain that, just like diabetes or hypertension, mental health conditions are real illnesses, with treatments that can really help,” she said. 

I try to explain that anxiety and depression, for example, can be due to a chemical imbalance in the brain, and not a sign of weakness.

—Lakshmi Rangaswamy

Rangaswamy observes that some of her older patients seem more willing to take medication for mental health conditions than to engage in counseling or psychotherapy. 

“I think there’s a stigma attached to needing help,” she said. “Patients will say they don’t want to talk to a ‘head shrink.’” 

She added that older patients who experience symptoms, such as frequent crying, decreased appetite, inability to sleep, racing thoughts or a case of the “nerves,” may not frame them as mental health conditions.

“I try to explain that anxiety and depression, for example, can be due to a chemical imbalance in the brain and not a sign of weakness,” Rangaswamy said. “I’ve even told patients that I’ve sought counseling at times myself and that it was beneficial to me. Normalizing things is very important.” 

Rangaswamy believes that reluctance may be a generational issue too. Many older adults who lived through the Great Depression or World War II prize self-reliance.  Working through feelings isn’t part of their coping toolkits. 

Ellen Edwards, 63, sees that with her own parents, ages 90 and 92. Edwards (not her real name) didn’t hesitate to seek counseling herself when she began feeling overwhelmed by the challenges of caring for them during the pandemic. But her parents won’t consider counseling, even though they’ve struggled with isolation and a series of health problems. 

“They have a very strong, independent spirit,” she said. “My mom’s father died when she was four. My dad was placed in an orphanage during the Great Depression. Their feeling is, if you’re having trouble, you’ve got to take care of it yourself.”

COVID-19 caused mental health problems but also helped to destigmatize them.

Even older patients who do overcome their hesitations and see a counselor may struggle with the process itself. 

“Some people can’t engage because they don’t know how,” Rebillet said. “They don’t want to complain. They say things like, ‘I know it’s going to work out’ or ‘It just takes time.’ This is a coping strategy they saw their parents use, and it’s their way of getting through challenges. They never got the message that it’s OK to talk about your feelings.” 

Despite those challenges, research suggests that older adults still experienced significantly less depression, anxiety and stress-related conditions than younger adults did during the pandemic. In a survey conducted early in the pandemic by the Centers for Disease Control and Prevention, nearly 50 percent of adults ages 18 to 24 reported anxiety, depression and/or stress-related disorders. Researchers believe many adults 65 and older, having lived through crises or difficult times in the past, possessed resilience and wisdom that enabled them to withstand the stresses of COVID-19. 

Many mental health experts also believe that the pandemic increased awareness of mental health in general. News reports about the virus often included information about the effects of isolation and stress. 

“COVID-19 did more than increase the prevalence of mental health issues; it also accelerated positive momentum to raise awareness about these issues … and accelerated long-term efforts to destigmatize mental health issues and normalize the search for help for these kinds of problems,” writes psychologist Michele Nealon. 

That awareness also spurred more older adults to practice self-care during the pandemic, Gerlach added. In the University of Michigan poll, one in three people reported making lifestyle changes—such as exercise, diet or meditation—to improve their mental health since the start of the pandemic.

“As a culture, we are talking so much more about mental health as part of our overall well-being,” said Murray. “If we can really normalize this and acknowledge that we’ve all gone through difficult times, that opens the door to conversation.” 

Sarah Crouch overcame her initial hesitancy about counseling, and she’s glad she did. 

Weekly sessions with Rebillet—Crouch was surprised to discover they were covered by Medicare—proved incredibly helpful. She continues to see Rebillet, although less often. If she were to give her mental health a grade, Crouch says, it’s up from a D in the midst of the pandemic to a B+ or an A- these days. 

While she was never suicidal, Crouch believes she wouldn’t have made it without help. 

“I think I would have ended up more isolated, more unhappy and sicker if I hadn’t done counseling,” she said. “I still have moments of fragility, but I’m a whole lot further along than I was. Counseling was really a lifeline.”  

Ageism’s Toll in the Age of COVID

An expert on aging and ageism explains the impact of age discrimination

In a powerful interview, the distinguished scholar and author Margaret Morganroth Gullette exposes ageism’s reach into the highest levels of government and its lethal consequences during the pandemic, She draws on research she has done for her work in progress, American Eldercide, which will be published by the University of Chicago Press. Her interview was posted on the website of the Radcliffe Institute for Advanced Study at Harvard on September 1, 2022. Gullette sometimes blogs for the Silver Century Foundation. 

Margaret Morganroth Gullette … is one of the nation’s leading voices on the negative impacts and violence of ageism. Gullette, 81 and a resident scholar at the Women’s Studies Research Center of Brandeis University, is the author of Ending Ageism, or How Not to Shoot Old People (2017), which won the MLA [Modern Language Association] Prize for Independent Scholars, and the Society for the Psychology of Women’s Florence L. Denmark Award for Contributions to Women and Aging. One of her oft-repeated refrains is “Fear ageism, not aging.” … [S]he is working on her next book, American Eldercide. 

What is ageism? And why is it so important now? 

We need to consider the immense power of ageism. I’ll start with just two aspects. People internalize the stereotypes of decline—the decline attributes that America culture associates with growing older—and this involves warding off their own personal bodily or economic decline. Another type is behavioral, and that means hating or shunning older people. These two types can be distinct.

You believe Donald Trump’s presidency resulted in abandoning the residents of nursing homes, and that COVID played a large role in increasing the stigmas around growing old in America. Can you elaborate?

Yes, Trump’s ageism was lethal. He exemplified both types. He is a typical idolater of youth, including, of course, his own lost youth. He has fake blonde hair, the fake tan. Youth emulation drives significant behaviors. He owned the Miss America Pageant for years, he remarried younger women, he fathered a child at age 60, and he spoke with boisterous bluster of his sexual assaults on Access Hollywood. Experts told him that the young were dying of COVID too, but he said, “Ah, they have a helluva immune system.”

And as president, he was an ageist in this other sense, in shunning older people. He had a chain in his mind linking dementia and disability and expendability and old people. In 2020, everyone knew the residents of nursing homes and older adults had been dying in appalling numbers. He literally did not count them. At the end of August 2020, the Centers for Disease Control and Prevention [CDC] was estimating that nearly 200,000 people had died, and he retweeted a claim that the deaths due to COVID were really only 9,000, since “most of the deaths are very old Americans with comorbidities.”

Politics, of course, required that he minimize the numbers because he chose to minimize the pandemic, but only ageism and ableism decided whom he would count. This is more important than everyday ageism—yours or mine—because he had power at the top of the political hierarchy to dissociate himself from the nursing home residents. 

More could have been saved had the Centers for Medicare & Medicaid Services [CMS] immediately provided tests and PPE [personal protective equipment] and monitored the staffing ratios, thus keeping residents safe and out of the overwhelmed ICUs [intensive care units]. So ageism rather than incompetence or any other reason that has been ascribed to Trump can explain why his first policy decision about COVID was to do nothing for nursing home residents. That was disastrous.

Why does ageism matter now, as COVID wanes?

It matters because we have seen it at the highest levels of government, we have seen it in many state governments’ responses to COVID, and we saw it in the triage guidelines adopted early on by hospitals, many of which used age to exclude people from access to ventilators. 

Ageism, the ageisms plural, really, causes a spectrum of damages—including internalized shame and job discrimination at early ages.… And “compound ageism,” as I call it, is what some people felt toward nursing facility residents. A particular form of intersectionality. It was a compound of they’re old, they’re sick, they’re poor, they’re women, they have cognitive impairments, they have mental health issues. Compound ageism is a very toxic prejudice. 

To be fair, people who are ageist aren’t necessarily also ableist, classist, racist, sexist, et cetera. They have overcome some of the other biases. And I keep in my heart families who lost loved ones in the facilities. They were heartbroken—separated from them by the lockdowns. Unable to have real funerals. A million mourners know their relatives could have lived longer, should have survived.

But in general, Americans seem to be responding to the plight of those residents with indifference, if not alienation.

Why might people respond this way?

The early part of the COVID Era was terrifying—I mean, it terrified the CDC. It should have terrified CMS, which is responsible for the residents. It terrified the doctors in the hospitals. It terrified people in rural communities, where half of the hospitals had no ICUs, and it terrified normal people, some more than others. People had a lot to focus on in their own personal lives: worry about their children, their parents, their jobs. Social cohesion weakened; those anxieties grew. People have a tendency to back away from more trouble, more sorrow, more misery. They protect themselves. And psychoanalysis says we protect ourselves from aging and dying. A lack of empathy makes ageism harder to fight even as COVID waxes and wanes.

Why does it make it harder to fight?

You catch me at a discouraged moment. I’ve been active in a group, Dignity Alliance Massachusetts. They’re wonderful people: they’re dedicated, they’ve been in this for two years. They supported 67 bills in the state legislature for people with disabilities and those who will need long term care. And the legislature went off and ended their session without dealing with a lot of things, including nursing homes. Despite the scandals in this state, they left without passing a nursing facility reform bill. In the national media, there was some coverage, but it didn’t amount to a campaign, “Old Lives Matter.” So this is not encouraging. 

This is the year to fight back against the causes of all those premature deaths—170,000 is one figure—in nursing homes. We know a lot about what happened. We know that 70 percent of 15,400 US nursing home facilities are owned by for-profit organizations, and some by hedge funds. Evidence shows they care more about the bottom line than about the health and well-being of their residents. There was understaffing and neglect, and people died. Much understaffing was not because aides fell ill—they could have been protected too—it was unnecessary. Actually, you catch me at a pitch of anger at the debased culture of feeling in this country. Anger is at least better than discouragement.

I hold on to the belief that many good, caring people will function in higher gear now. My own field, age studies, and gerontology are exposing the evils. We have an age-friendly cities movement; we have not just AARP but nonprofits like Justice in Aging and the disability rights organizations. That’s where the action is. You have got to go to the law to fight some of these things, particularly if legislators will not do their job. We already have laws on the books. One of the candidates for state attorney general said she was going to look at all the age-related regulations in Massachusetts; update and monitor them; and go to court, if need be, to rectify injustices. 

I like the term “age justice.” There’s more reason to get on board with it now. Age is not a trivial categorization. Ageism is serious—as serious as sexism, as serious as racism. In the minds of people of conscience and in the behaviors of people of conscience, it should rank with those. Indeed, it could matter more, because it is a prejudice that targets anyone lucky enough to grow old.

‘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.”

Seasoned Warriors

Experienced, wiser and more strategic, older activists fight for change

Every Monday morning for nearly a year, Judy Sherry, 82, has called the office of her senator, Roy Blunt (R-Missouri), with the same question: When is he going to get the courage to do something about gun violence? 

“He’s retiring soon, for God’s sake,” she said.

Those weekly calls seemed to make no difference, but that hasn’t deterred Sherry. As founder and president of Grandparents for Gun Safety, she calls, writes, marches, speaks to groups and fields TV interviews—anything to get the message out for commonsense gun control. 

“All people have the right to feel safe from gun violence in their communities,” she said.  

The impact of activists like Sherry is likely to grow, as more than a million people 55 and older join the ranks of the retired each year in the United States. Like Sherry, these older activists come armed with their own superpowers: lifetimes of experience, a supply of available time and a sense of perspective that strengthens them for the long game. 

“From marching to improving road safety; from envelope-stuffing to making calls; from being arrested to circulating petitions; from fundraising to letter writing; from cooking in a community kitchen to starting an urban farm—for these people, it is not too late to try to save the world,” wrote Thelma Reese and BJ Kittredge, coauthors of How Seniors are Saving the World: Retirement Activism to the Rescue! (2020).

A Quiet Force 

Media attention tends to spotlight young activists like Greta Thunberg, a teen climate change activist, or Malala Yousafzai, who won a Nobel Peace Prize at age 17. Older activists who’ve worked in their communities for years are often overlooked, according to Loretta Graceffo, a correspondent for the media watchdog group Fairness & Accuracy in Reporting. 

“By devaluing the wisdom and experience of elders in favor of uplifting a handful of teen activists for clicks, [the] media underplay the collective power that can come from intergenerational cooperation,” she wrote. 

Older activists may not create the same media splash, but they’re a quieter, more effective force, said Tommy Steed, 73, chairman of the Association of BellTel Retirees. The nonprofit works to protect the pensions and benefits of retirees from Verizon and the original Bell System. 

Steed contrasts his current role to his rowdier approach as a union steward in his 20s. Back then, he relished tangling with the police on picket lines. Now, his approach is more low-key. Steed partners with fellow retirees, many of them former managers who once sat on the opposite side of the bargaining table. 

“Older activists are stoic and strategic,” he said. “We’re quiet, but that’s how to be effective. Younger activists are a mob scene for the media. They make a lot of noise. We don’t want to make a lot of noise; we want to be effective.” 

A Wealth of Experience      

Older adult activists often bring a more nuanced perspective and broader knowledge of communities. As Graceffo wrote, “With age often comes access to institutional infrastructures and financial resources, as well as a deeper understanding of history.”  

“We’ve had more time to make mistakes than younger activists,” said John Fullinwider, 70, a lifelong community organizer in Dallas and co-founder of Mothers Against Police Brutality. “Sometimes you can see the problems with greater depth after you’ve had longer experience with them.”

Fullinwider points to historic victories that most people now take for granted: the abolition of slavery, the 40-hour work week, women’s right to vote.

His advice: “Never lose your youthful idealism. Pace yourself for the long-distance run. You lose until you win. It’s good to have that sense of history about it.” 

I’ve learned that you don’t bury your head like an ostrich. You get out there and deal with it.

—Karlin Chan

Wisdom and experience empowered Karlin Chan to act when Asian Americans in the Chinatown neighborhood of New York were targeted during the pandemic. He started a block watch group to patrol neighborhoods. Having lived in Chinatown for more than 60 years and worked as a community organizer for decades, Chan has connections throughout the city and with the New York City police department. 

“Hate crimes have been around here since I was a kid,” he said. “I’ve lived the history, and I’ve learned that you don’t bury your head like an ostrich. You get out there and deal with it.” 

For Sherry, being strategic means patience—staying realistic about what can be accomplished immediately while taking small steps in the meantime. After learning that many gun-related deaths are due to accidents or suicide, her organization started Lock It for Love. They’ve distributed more than 5,000 free, high-quality gun locks at community events. 

Yes, Sherry said, she’d like more sweeping reforms, but until then, she’s convinced the gun locks have saved lives. 

“Clearly, we have saved someone from suicide, or some little kid from picking up an unlocked, loaded gun,” she said. 

Inspired by the 1960s

Unlike their Greatest Generation predecessors, many of today’s generation of older adults came of age during the Vietnam War era in the 1960s. For some, it sparked a lifetime of activism. For others, that formative time created an emotional connection that has lingered, even if career and family obligations limit their ability to stay in the fight. 

The Vietnam era is very much intertwined in the story of Henry Stoever’s activism. His father was forced to join the Nazi war effort after attempting to immigrate to the United States in the 1930s. Stoever was born in Germany in 1948; his family came to the United States in 1951. Stoever grew up enduring taunts from kids who called him “Adolph” and watching stories about the Holocaust on Walter Cronkite’s Twentieth Century documentaries. When war was in the news in the1960s, Stoever worried that Americans “were the Nazis in Vietnam.” 

Those formative experiences led to Stoever’s lifelong work in peace activism. Since 2003, Stoever has stood at the same street corner in Kansas City, MO, every Tuesday, waving a sign that reads, “Imagine a world free of nuclear weapons.” Along with other local activists, he’s been arrested numerous times for trespassing during protests at a nuclear weapons plant; recently he was convicted and faces a trial in September. He’s looking forward to making his case to the jury. 

In talking about his work, Stoever seems immune to despair, even if his efforts haven’t led to significant changes.

When the news is upsetting, activism can ease a sense of despair. 

“My activism comes from a deep caring for others,” he said. “Activism is a sign of hope, faith and love.”  

As a teen, Lauren Mayer canvassed for presidential candidate George McGovern, spurred by her fears for her older brothers, who were eligible for the draft. Today, at 63, Mayer is earning a living as a songwriter in the Los Angeles area but finds ways to contribute when she can. Inspired by the protest singers of the 1960s and early 1970s, she created her own twist for the digital age. She writes and records a new song every week, offering her sassy take on issues ranging from reproductive choice to climate change to LGBTQIA+ rights. Some 20,000 people follow her on YouTube and Facebook. 

“I don’t sing as well or look as cute as I did when I was younger, but I think my writing is better because I have so much more life experience,” Mayer said. 

Mayer performs at rallies and donates the use of her songs for fundraisers for groups like the Raging Grannies, a network of older protesters.

“The news these days is often so upsetting that people feel paralyzed,” she said. “For me, this project completely eases my sense of despair.” 

Time to Devote

Another key advantage that older activists bring to their causes: time. Once they’ve reached their 60s or 70s, many have paid off the mortgage and the kids’ college tuition. They can afford to retire or work fewer hours. 

Arch Mayfield, 73, still works part time as a writing instructor at Texas Christian University in Fort Worth. He’s involved in helping support refugees in the community through his church. When US immigration officials began separating children from their families at the border, he began standing at a street corner with a few other activists once a week, holding signs showing children in cages.  

During elections, Mayfield serves as an election judge, working shifts that start at 5:30 a.m. and continue until the polls close. (Every election in his county requires a set of election judges and clerks to represent both the Democratic and Republican parties.) The work pays a small stipend, but younger people with children and full-time jobs usually can’t step in. 

“I see that involvement as a way of countering voter suppression and to help ensure the widest possible participation,” he said. 

Once you open your eyes to injustices, it’s hard to be happy without doing something about it. 

—John Fullinwider

Bill Holston, 66, spent the first 30 years of his career in commercial law in Dallas. In the late 1980s, he took on a pro bono case representing an immigrant seeking asylum in the United States. 

“I fell in love with the work,” he said. “As I represented more and more people, I developed a greater and greater passion for the rights of the people I was representing.” Ten years ago, he closed his commercial law practice to become executive director of the Human Rights Initiative of North Texas. 

Holston says he’s inspired by John Lewis, the US congressman and civil rights activist who continued to get into “good trouble” until his death at age 80. As he gets older, Holston thinks more about his legacy. He’s more focused on “eulogy virtues,” citing New York Times columnist David Brooks, who wrote: “The résumé virtues are the skills you bring to the marketplace. The eulogy virtues are the ones that are talked about at your funeral—whether you were kind, brave, honest or faithful.”  

With that change in focus, Holston said, he has a more long-term view. 

“The older you are, the more wired you are toward persistence,” he said. “I’ve been doing this a long time, and I’m going to keep doing this as long as I’m physically and mentally capable.” 

For many activists, their work also brings a sense of purpose and meaning. 

Activism “is a good way to live your life,” Fullinwider said. “What kind of life is it to just enjoy your advantages and buy things and then die? Once you open your eyes to injustices, it’s hard to be happy without doing something about it. Most people have a conscience. When you listen to it, your life will be better, and you have a chance to make life better for others.” 

A Good Start 

Judy Sherry’s weekly calls to Roy Blunt may have made some difference after all. Blunt was one of 10 Republican senators who helped hammer out a bipartisan deal on a narrow set of gun safety measures announced on June 12. However, the deal didn’t include other basic measures, like expanded background checks or limits on assault weapons. 

“It is a good start, but that’s all,” she said.  

Sherry jokes that she sometimes wishes she’d chosen a cause she’ll live long enough to see solved. But she remains convinced that gun violence will ultimately be addressed. 

“We’ve changed cultures before,” she said. “We’ve changed smoking. We’ve changed seatbelts. We’ve changed drinking. We didn’t ban cigarettes or cars or alcohol, but we figured out a better way to deal with it, and we will do that here.” 

Colorado Passes the First Right-To-Repair Bill for Wheelchairs

But there’s still no easy fix for wheelchair users

When a power wheelchair stops working, that can totally immobilize the person who uses it, and getting it repaired is difficult and time consuming. In this article, journalist Markian Hawryluk digs deeply into why that’s so, what Colorado is doing about it and why problems may persist. Kaiser Health News posted Hawryluk’s article on June 2, 2022. It also ran on U.S. News & World Report. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Robin Bolduc isn’t the type of person who takes “no” for an answer—particularly when it comes to fixing her husband’s wheelchair.

Her husband, Bruce Goguen, 69, is paralyzed from multiple sclerosis. And without his chair, he would be stuck in bed, at risk of developing pneumonia or pressure sores that could lead to sepsis and death.

When components of the chair wear out or break down, the road to repair is littered with obstacles. Recently, the Broomfield, CO, residents had to replace a button that Goguen presses with his head to control his wheelchair. They considered going through his wheelchair supplier for the repairs.

“If we did that, he would literally be in bed for months,” said Bolduc, who, along with her husband, is a member of the Colorado Cross-Disability Coalition, an advocacy group. “There’s a quality-of-life issue—he could be lying in bed staring at the ceiling. He has no movement without his wheelchair.”

But instead, Bolduc tracked down the manufacturer, ordered several buttons online for $20 each and discovered that replacing the part herself was simple.

“It’s a plug,” she explained. “It’s like charging your cellphone.”

The multibillion-dollar, power-wheelchair market is dominated by two national suppliers, Numotion and National Seating and Mobility. Both are owned by private equity firms that seek to increase profits and cut spending. One way they do that is by limiting what they spend on technicians and repairs, which, when combined with insurance and regulatory obstacles, frustrates wheelchair users seeking timely fixes.

The $70 billion durable medical equipment market has been an attractive target for private equity investment because of the aging US population, the increasing prevalence of chronic conditions and a growing preference for older adults to be treated at home,  according to the investment banking firm Provident Healthcare Partners. Medicare’s use of competitive bidding favors large companies that can achieve economies of scale in manufacturing and administrative costs, often at the price of quality and customer service.

Wheelchair suppliers usually keep few spare parts on hand and wait for approval from insurers to order more. 

Regulations set by Medicare and adopted by most Medicaid and commercial health plans have led to lower-quality products, no coverage for preventive maintenance and enough red tape to bring wheelchairs to a halt.

Power wheelchair users have long been fighting for the right to repair their wheelchairs themselves or through independent repair shops. Medicare and most insurance companies will replace complex wheelchairs only every five years. The wheelchair suppliers that have contracts with public and private health insurance plans restrict access to parts, tools and service manuals. They usually keep a limited inventory of parts on hand and wait until health plans approve repair claims before ordering parts.

Some chairs require a software passcode or a physical key for any repairs. Wheelchair users who make fixes themselves may void their warranty or lose out on insurance payments for repairs.

“What bothers me is that the wheelchair company, knowing that the buttons wear out, won’t keep any in stock,” Bolduc said. “They’ll risk my husband’s life, but they won’t risk $20 to buy a button and not get reimbursed for it.”

That could soon change. The Colorado legislature has passed a first-in-the-nation right-to-repair bill for power wheelchairs that will allow owners and independent repair shops to access parts, embedded software, tools and documentation needed to perform diagnostic, maintenance or repair services. Colorado Gov. Jared Polis is expected to sign the bill into law this month.

The right-to-repair bill may help, said Mark Schmeler, an associate professor of rehabilitation science and technology at the University of Pittsburgh, but it’s not a perfect solution. “There is a serious problem with wheelchair repairs, and the consumers are basically crying out for help,” he said.

Part of the problem, Schmeler said, is a Medicare decision not to cover preventive maintenance for power wheelchairs. Many wheelchair users are unfamiliar with or unable to do routine maintenance, such as tightening the bolts or cleaning the casters. As a result, problems aren’t addressed until something breaks down, often leaving the user stranded.

Suppliers tend to lose money on repairs, so they have little incentive to hire more technicians.

Additionally, Medicare officials have interpreted the statute establishing payment for durable medical equipment to cover wheelchairs only for in-home use. Consequently, many power wheelchairs aren’t designed for outdoor use and are prone to failures when users take them outside. “It’s like you’re outside walking around all day with your slippers on,” Schmeler said.

When Medicare adopted competitive bidding for durable medical equipment in 2011, it allowed large companies to undercut the pricing of smaller, local wheelchair shops. Numotion and National Seating and Mobility bought out many smaller companies and now dominate the market.

Competitive bidding encourages suppliers to press manufacturers for lower-cost wheelchairs, which spurs manufacturers to use lower-quality parts. More than one in four repairs results in users being stranded, missing a medical appointment or missing work, according to a study published in 2016 in the journal Archives of Physical Medicine and Rehabilitation.

Wheelchair suppliers make most of their money by selling the wheelchair and tend to lose money on repairs. So there is little incentive to hire more technicians or pay for training.

Suppliers testified against the Colorado bill. “The problem with this legislation is that it does not provide a good solution to address the problems responsible for the delays,” said Seth Johnson, senior vice president of government affairs for Pride Mobility Products, a Duryea, Pennsylvania-based supplier of power wheelchairs. If repairs are done incorrectly, he said, patient safety could be jeopardized.

Medicare regulations add to the problems, with low reimbursements, and Medicare pays only for parts and labor, not for technicians’ travel time. Another cause for delays: Medicare sometimes requires physicians to document that an individual still needs a wheelchair and that it needs to be repaired.

Kenny Maestas of Lamar, CO, has been in a wheelchair since his spine was severed during a rollover vehicle accident in 1987. His wheelchair supplier, located more than 150 miles away, won’t schedule a repair visit unless it has another client nearby that needs a repair. When his battery begins to die and won’t hold a charge, he becomes tethered to an outlet, unable to leave his home for more than 20 to 30 minutes at a time until the supplier replaces the battery.

“It’s such a broken system,” Maestas said.

Given the right to repair, wheelchair users can buy parts and do the work themselves or go to independent repair shops. 

Julie Jennings, 56, of Denver, was diagnosed with multiple sclerosis in 1995 and now can’t walk.

She described a lengthy ordeal to get even a simple wheelchair fix—the supplier waited for insurance to approve the repair before ordering the parts. The last time she needed a repair visit—to replace the battery, armrests, and a joystick controller—the entire process took three months.

“I try to be proactive, and I try to keep an eye on the wear and tear,” she said.

The right to repair could help reduce the kind of delays that Maestas and Jennings have experienced by allowing users to purchase the parts and repair the wheelchairs themselves or to call in independent repair shops.

Consumer advocates with the Colorado Public Interest Research Group said the power-wheelchair industry is the first sector required to provide repair access since Massachusetts voters approved a right-to-repair measure for cars through a 2012 ballot initiative.

Car manufacturers decided they didn’t want to fight that battle in all 50 states and opted to apply the same standard across the country.

Don Clayback, executive director of the National Coalition for Assistive and Rehab Technology, an industry group representing wheelchair suppliers, said whether the industry would change its policies nationwide was unclear. “We would expect changes will be limited to Colorado,” he said.

Last year, President Joe Biden issued an executive order that directed the Federal Trade Commission to draft regulations that limit manufacturers’ ability to restrict independent repairs of their products. At least three right-to-repair bills have been introduced in Congress this year. Massachusetts and Pennsylvania are also considering bills that address wheelchair repairs.

For now, Bolduc is prepared to go to any length to get her husband’s chair repaired. Once, she took away an uncooperative technician’s keys until he fixed the wheelchair. She then returned his keys and gave him a big candy bar to smooth things over.

“They’ll turn me into this crazy woman because my husband’s life is on the line,” she said. “If I have to kidnap somebody to get his chair fixed, I’ll do it.”

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.”

 

Apps Can Open Up a World of Possibilities for Older Adults

But their unfamiliar technology stymies too many  

John Brandt is still on good terms with his ex-mother-in-law—so good that he gave her an iPad for Christmas last year, along with a promise to provide tech support.  

The learning curve turned out to be a bit steep. At 90, his ex-mother-in-law, a retired government agency director, is still sharp and not new to computers. But using apps presented new challenges. 

“She kept saying, ‘I’m just so stupid, I can’t do this,’” he said. 

Brandt realized that his mother-in-law hadn’t used a smartphone or a tablet before. Skills he’d acquired years ago—swiping and tapping to turn on the device, open, navigate and close apps—were all new to her.

“Those of us who got iPhones 12 or 14 years ago have already learned all the features and the gestures,” he said. “It was like she was learning a new language but with a physical component.” 

After a few long sessions, she became confident with FaceTime, text messaging and Facebook. Now she uses her iPad regularly to stay in touch with family members who live out of town, including a granddaughter in Serbia.  

As Brandt’s experience shows, apps have the potential to enhance an older adult’s quality of life. Apps like Messenger, Zoom and FaceTime provide social connections. Apps for ridesharing (like Uber or Lyft) or grocery delivery services boost independence. Health-related apps allow people to track vital signs, monitor progress, detect problems and possibly save trips to the doctor. 

But many older adults aren’t taking advantage of them.

Apps to Sustain Independence 

Apps offer significant potential for supporting older adults’ independence. Those who don’t drive can use the Lyft or Uber app to schedule rides to and from doctor appointments, concerts and events outside of the community. With banking apps and online payment apps like PayPal or Venmo, they can deposit checks, transfer money and pay bills without a trip to the bank. Apps like Simply Safe or Ring can check who’s at the front door or send alerts for package deliveries. Digital-assistant apps like Alexa or Echo can turn off lights in the house or set reminders to take medications. 

Leticia Valdez, life enrichment manager at Presbyterian Village North, a retirement community in Dallas, has seen how older adults benefit from apps. She estimates more than 80 percent of residents use the community’s Cubigo app to sign up for activities, to check dining room menus and make reservations and to schedule maintenance in their apartments. 

The residents have plenty of help—Valdez leads monthly training classes and provides one-on-one coaching. That experience has shown Valdez how older adults often face a steep learning curve. Just recently, a resident came in for tech help; when she informed him that he needed to download an app, he said, “What’s an app?” 

“It was like I was speaking a foreign language,” she said.  

A lot of [older people] are afraid that if they touch the wrong thing, they will break the phone

—Susan Lewis

Susan Lewis, 79, uses dozens of apps daily for everything from driving directions to games to ordering prescription refills. But many neighbors in her 55+ apartment complex do not use them at all. Some own smartphones but only use them for phone calls. 

Even though she doesn’t consider herself all that tech savvy, Lewis has become the informal tech guru for her community. 

“I’m not afraid of technology,” she said. “A lot of [older people] are afraid that if they touch the wrong thing, they will break the phone. They don’t know about the App Store, or where to look for apps or how to adjust their phone settings.” 

Lewis’ favorite tip: turn to your computer and use Google. When she’s stumped herself, she can almost always find a tutorial video or an article with step-by-step instructions. YouTube offers short videos on how to download apps on an iPhone, iPad or Android device. 

Apps to Support Health 

Ed Sanders knows of at least one person who’s convinced an app saved his life. Sanders, a tech trainer for Microsoft, often volunteers at senior centers and retirement communities, helping older adults with their devices. 

One older man told Sanders he’d had a stroke and, thanks to the Health app on his phone, first responders were able to access his medical information immediately, even though he was unconscious, saving precious minutes. 

Sanders thinks using the Health app is a no-brainer for anyone, particularly those with chronic health conditions, yet relatively few older adults he meets know about it or how to enter their medical information. 

The Health app is one of a rapidly growing number of apps designed to track an individual’s medical and health information that have significant potential to help older adults manage chronic conditions and save trips to the doctor. But experts see two issues: not all of these health apps are reliable, and relatively few older adults are using them.  

App users should be aware that there are wide variations in the functionality, accuracy and safety of medical apps. Because most health apps don’t fit the FDA’s definition of medical devices, most are not subject to regulation. Many were created with little or no oversight from medical experts.

Researchers called on the FDA to rethink its hands-off stance when it comes to regulating apps. 

Calling the digital health marketplace a “wild west,” studies show that developers “seldom involve health professionals or users in the design, development or deployment.” Patients and doctors “know very little about whether apps will work or how they might affect the cost and quality of care.” 

In a 2021 study of 15 symptom checkers (apps where users enter their symptoms and obtain a list of possible diagnoses), most fared no better than an average layperson in diagnosing. Plus, the symptom checkers erred on the side of declaring an emergency, potentially sending users to ERs needlessly. Similarly, a study of apps that purport to “analyze” moles or other skin lesions for the presence of skin cancer showed they were not reliable. 

And while they are fun, those so-called “brain game” apps offer such overstated claims that 96 scientists at Stanford University and other institutions issued a statement saying, “The scientific track record does not support the claims [that] … they actually help older adults boost their mental powers.”

Some medical experts are proposing policies to protect and better inform consumers.  In 2021, an international team of researchers proposed a framework for evaluating digital health devices. While acknowledging the tremendous promise for apps to improve health and well-being, the team also called on the FDA to rethink its hands-off policy and encouraged health care providers to help steer patients toward “the small subset of effective and rigorously evaluated apps.”

For now, patients should beware: they should talk with their doctors before relying on an app, research the app online and read reviews and ratings. 

The Challenges Apps Present

While apps may be unreliable when diagnosing health problems, they do have significant potential for helping older adults manage their health. The Abridge app, for example, records conversations at the doctor’s office, creating a transcript with definitions of medical terms that can be shared with caregivers. Medication apps like Pillboxie remind people to take their pills at specific times daily. SmartBP checks blood pressure with a monitor and smart watch. MyFitnessPal tracks calories and nutrients. 

But according to a University of Michigan study, less than half of people aged 50 to 80 have ever used a health-related app. Only 28 percent of people with diabetes use them to track blood sugar. Further, the study noted that older adults who stand to benefit most from these apps—those in poor health and those with less access to health care—are even less likely to use them. To help boost usage, the researchers encouraged health providers to discuss the use of health apps with their patients.

Tapping and swiping can be difficult for those who have arthritis or poor hand-eye coordination.

Navigating apps on mobile devices involves skills that can be challenging, even for the computer-savvy, according to Ignacio Aranda, technology trainer for the Senior Source in Dallas. 

“I notice that many of the older adults I work with tend to use web browsers instead of apps, even on their mobile devices, because that’s what they know from using a desktop or laptop,” Aranda said. But accessing [a website] via web browser usually means the connection is less secure and there’s less functionality. And some app-based services, like Lyft, aren’t available at all via web browsers. (There are some workarounds, however. A company called GoGoGrandparent lets riders call an Uber or Lyft via a toll-free phone number or website. Some senior centers will call rides for those who can’t access the app themselves.) 

Downloading apps may involve accessing infrequently used passwords. After adding a new app, the user is typically bombarded with requests for permissions (such as location services or syncing with the user’s photo library), which can be daunting or confusing. Mobile devices need frequent updates; without them, apps won’t function properly. 

Navigating mobile devices requires mastering a new “language” of swipes and taps that differ from the tools on laptop or desktop devices. That’s doubly difficult for adults with mild cognitive impairment, and tapping and swiping can be challenging for adults with arthritis or other conditions that affect hand-eye coordination. (Sanders advises older adults to obtain a stylus for easier, more precise tapping and swiping.) 

Bridging the Gap 

Efforts are underway to address some of these challenges. Aranda teaches a curriculum developed by Senior Planet, part of Older Adults Technology Services (OATS) from AARP, a digital literacy program that runs technology training centers in six cities in the United States. Older adults can take online and in-person courses or call the Senior Planet Tech Hotline (920-666-1959) for tech help.   

The pandemic pushed many older adults to hone their tech skills. An AARP study found a sharp increase in older adults purchasing and using technology during the pandemic. 

Valdez noticed that many residents in her community started using apps to order groceries for delivery and Zoom or Facetime to connect with friends and family during the pandemic. Having discovered those apps out of necessity, she said, many still use them for convenience. 

Susan deLarios, 75, a resident of Presbyterian Village North, opens Cubigo multiple times daily to sign up for activities, look up residents’ names, check the dining room menu and schedule meals. She uses MyBSWHealth, a proprietary app for her health care provider, to make appointments, check test results and track medications and other records. She uses Audible to listen to audio books, Lyft to schedule rides, Amazon to order merchandise, Facebook to keep up with friends, and her bank’s app to manage her checking account. If she wants to adjust her hearing aids, there’s an app for that too. Apps have made her iPhone the nerve center of deLarios’ daily life. 

“I don’t know what I’d do without it,” she said. 

Retooling the Nation’s First Long Term Care Insurance Program

Washington State delays start of groundbreaking health benefit

Seventy percent of Americans who turn 65 need long term care at some point, but the nation has no program in place to help pay for that. Families can be bankrupted by the expense. In 2019, the state of Washington passed a law establishing a state-wide program, which could become a model for the country. It hasn’t started yet and is currently being retooled. In this article written for Kaiser Health News, journalist Michelle Andrews describes the law as it stands and the changes under consideration. Her story was posted on the KHN website on April 18, 2022. It also ran on NPR. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Patricia Keys, 71 and a stroke survivor, needs help with many everyday activities, such as dressing and bathing. Her daughter Christina, who lives near her mom in Vancouver, WA, cares for her in the evenings and pays about $3,000 a month for help from other caregivers.

Christina Keys, 53, was thrilled three years ago when Washington state passed a first-in-the-nation law that created a long term care benefit for residents who paid into a state fund. She hoped it would be a resource for others facing similar challenges.

The benefit, which has a lifetime limit of $36,500, would have made a big difference during the first year after her mom’s stroke, Keys said. Her mom needed a ramp built and other modifications made to her house, as well as a wheelchair and hospital bed. The extra money might also have made it easier for Keys to hire caregivers. Instead, she gave up her technology sales job to look after her mom.

“People are under this cloud of delusion that between your insurance and your retirement [income] you’re going to be fine,” she said. “They don’t understand all the things that insurance doesn’t cover.”

But relief for Washington families will have to wait. The WA Cares Fund,  which was set to begin collecting money for the program with a mandatory payroll tax on workers in January [2022] has been delayed while lawmakers made adjustments during the current legislative session. Payroll deductions will start in July 2023, and benefits will become available in July 2026.

Other states are watching Washington closely as they weigh offering coverage for their own residents. In California, a task force is examining how to design and implement a long term care program, according to the National Conference of State Legislatures. Illinois and Michigan are also studying the issue, according to the NCSL.

Supporters of the Washington program say it just needed fine-tuning and note that social programs like Medicare and the Affordable Care Act also underwent tweaking. The program’s long-term solvency, however, is in doubt and the cost to workers who buy into the program is in question.

We don’t have a solution at the federal level, so states are taking it on themselves to experiment with solutions.

—Bonnie Burns

What’s not in doubt is that it is critically important to address long term care needs. About 70 percent of people who turn 65 will require some type of long term care services. Many will need help such as an at-home assistant, while others could face a stay in a nursing home, which on average costs more than $90,000 a year. But many don’t have good options to cover the expense. Medicare’s coverage is very limited, while Medicaid generally requires people to impoverish themselves before it picks up the tab. Private long term care insurance policies are unaffordable for most people.

The upshot: many people rely on unpaid family members to help them with medical care, as well as everyday activities like bathing and dressing.

The problem is getting much worse. The number of people 85 and older is projected to more than double within the next 20 years, while the number of Americans living with Alzheimer’s disease and related dementias is expected to double as well, to 13 million. 

The federal Community Living Assistance Services and Supports Act (CLASS Act), which was part of the Affordable Care Act, created a voluntary long term care buy-in program, but it was never implemented because of concerns it wouldn’t be financially sound. Since then, policymakers in Washington, DC, have had little appetite for addressing the problem.

“We don’t have a solution at the federal level, so states are taking it on themselves to experiment with solutions,” said Bonnie Burns, a consultant for California Health Advocates and an expert on long term care who was appointed to a Washington state committee to help develop a supplemental long term care insurance product to be offered alongside the state benefit.

The Washington state program’s maximum benefit is intended to cover a year’s worth of home care at 20 hours a week, said program director Benjamin Veghte, PhD.

Although wealthy people likely can afford to pay for their care and the poorest families qualify for Medicaid, middle-class families might burn through their savings trying to cover such bills.

Many employers are now offering their workers the opportunity to buy a private long term care plan.

“It doesn’t solve all the problems, but with a modest premium and a modest benefit it eases the problem for families,” Veghte said. It could also give some families time so that “maybe they can develop a plan” for long term care needs after their benefits expire, he added.

Although the law passed in 2019, it remained below many people’s radars until the mandatory payroll deduction approached. Workers faced a tax of 0.58 percent per $100 of income. For someone earning $52,000 annually, the deduction would equal $302 a year, according to state estimates. As people realized they were about to have to start paying into the program, some pushed back.

Workers could get an exemption if they had private long term care insurance, and thousands of people scrambled for that coverage before the Nov. 1, 2021, opt-out deadline. Many of the state’s employers quickly offered workers the opportunity to buy private plans.

Because withholding for the benefit isn’t capped based on income, wealthier people may be better off with private long term care insurance, if they can pass the insurer’s medical evaluation.

“We did have a good number of higher-earning, younger folks who wanted to buy a policy,” said Gary Brooks, a certified financial planner who is co-owner of BHJ Wealth Advisors in Gig Harbor, WA.

By last month, 473,000 workers had taken the one-time offer to opt out of the program.

Other people raised objections because they would have to pay into the system but wouldn’t benefit. These included people who work in Washington but live in a neighboring state, the spouses of service members who are unlikely to make Washington a permanent home, people planning to retire before the three years needed to qualify for benefits, and some workers on temporary visas. The commission overseeing the long term care program has estimated that the number of people from these groups eligible to opt out is about 264,000.

We know that as the first state to do this that it may not be perfect going out of the gate.

—Jessica Gomez

In January, Gov. Jay Inslee signed legislation that addressed many of these issues. It allows certain groups to opt out and people nearing retirement to receive partial benefits based on the number of years they paid into the program.

One other group—those who plan to retire elsewhere—hasn’t been addressed, but the state is developing recommendations for the legislature, Veghte said. According to current actuarial projections, 3.1 million workers will begin paying into the program next year, out of a total of 3.6 million, Veghte said.

Some critics are concerned that allowing more people to opt out of the program puts it on increasingly precarious financial footing.

“The solvency issue just gets greater and greater,” said Richard Birmingham, a partner at Davis Wright Tremaine in Seattle who is representing employers and workers in a class-action lawsuit that claims the law violates federal and state statutes governing employee benefit plans. “Any change they make further increases the cost.”

Supporters are sponsoring a ballot initiative that they believe would help bolster the program’s assets by allowing program funds to be invested in a diversified portfolio rather than fixed-income investments. That initiative “probably will eventually” pass, Veghte said, even though it failed in 2020.

Although the program delay isn’t ideal for the thousands of people who could benefit from the new program in the short term, consumer advocates are taking it in stride.

“We know that as the first state to do this that it may not be perfect going out of the gate,” said Jessica Gomez, coalition manager of Washingtonians for a Responsible Future, which represents community groups for aging and disability populations. “It may have to be fixed, but we’ll fix the problems and go forward.”