It seemed clear they had some type of cognitive impairment. Yet they were living alone.

Portacolone, an associate professor at the University of California-San Francisco, wondered how common this was. Had anyone examined this group? How were they managing?

When she reviewed the research literature more than a decade ago, there was little there. “I realized this is a largely invisible population,” she said.

Portacolone got to work and now leads the Living Alone With Cognitive Impairment Project at UCSF. The project estimates that that at least 4.3 million people 55 or older who have cognitive impairment or dementia live alone in the United States.

About half have trouble with daily activities such as bathing, eating, cooking, shopping, taking medications, and managing money, according to their research. But only 1 in 3 received help with at least one such activity.

Compared with other older adults who live by themselves, people living alone with cognitive impairment are older, more likely to be women, and disproportionately Black or Latino, with lower levels of education, wealth, and homeownership. Yet only 21% qualify for publicly funded programs such as Medicaid that pay for aides to provide services in the home.

In a health care system that assumes older adults have family caregivers to help them, “we realized this population is destined to fall through the cracks,” Portacolone said.

Imagine what this means. As memory and thinking problems accelerate, these seniors can lose track of bills, have their electricity shut off, or be threatened with eviction. They might stop shopping (it’s too overwhelming) or cooking (it’s too hard to follow recipes). Or they might be unable to communicate clearly or navigate automated phone systems.

A variety of other problems can ensue, including social isolation, malnutrition, self-neglect, and susceptibility to scams. Without someone to watch over them, older adults on their own may experience worsening health without anyone noticing or struggle with dementia without ever being diagnosed.

Should vulnerable seniors live this way?

For years, Portacolone and her collaborators nationwide have followed nearly 100 older adults with cognitive impairment who live alone. She listed some concerns people told researchers they worried most about: “Who do I trust? When is the next time I’m going to forget? If I think I need more help, where do I find it? How do I hide my forgetfulness?”

Jane Lowers, an assistant professor at the Emory University School of Medicine, has been studying “kinless” adults in the early stages of dementia — those without a live-in partner or children nearby. Their top priority, she told me, is “remaining independent for as long as possible.”

Seeking to learn more about these seniors’ experiences, I contacted the National Council of Dementia Minds. The organization last year started a biweekly online group for people living alone with dementia. Its staffers arranged a Zoom conversation with five people, all with early-to-moderate dementia.

One was Kathleen Healy, 60, who has significant memory problems and lives alone in Fresno, California.

“One of the biggest challenges is that people don’t really see what’s going on with you,” she said. “Let’s say my house is a mess or I’m sick or I’m losing track of my bills. If I can get myself together, I can walk out the door and nobody knows what’s going on.”

An administrator with the city of Fresno for 28 years, Healy said she had to retire in 2019 “because my brain stopped working.” With her pension, she’s able to cover her expenses, but she doesn’t have significant savings or assets.

Healy said she can’t rely on family members who have troubles of their own. (Her 83-year-old mother has dementia and lives with Healy’s sister.) The person who checks on her most frequently is an ex-boyfriend.

“I don’t really have anybody,” she said, choking up.

David West, 62, is a divorced former social worker with Lewy body dementia, which can impair thinking and concentration and cause hallucinations. He lives alone in an apartment in downtown Fort Worth, Texas.

“I will not survive this in the end — I know that — but I’m going to meet this with resilience,” he said when I spoke with him by phone in June.

Since his diagnosis nearly three years ago, West has filled his life with exercise and joined three dementia support groups. He spends up to 20 hours a week volunteering, at a restaurant, a food bank, a museum, and Dementia Friendly Fort Worth.

Still, West knows that his illness will progress and that this period of relative independence is limited. What will he do then? Although he has three adult children, he said, he can’t expect them to take him in and become dementia caregivers — an extraordinarily stressful, time-intensive, financially draining commitment.

“I don’t know how it’s going to work out,” he said.

Denise Baker, 80, a former CIA analyst, lives in a 100-year-old house in Asheville, North Carolina, with her dog, Yolo. She has cognitive problems related to a stroke 28 years ago, Alzheimer’s disease, and serious vision impairment that prevents her from driving. Her adult daughters live in Massachusetts and Colorado.

“I’m a very independent person, and I find that I want to do everything I possibly can for myself,” Baker told me, months before Asheville was ravaged by severe flooding. “It makes me feel better about myself.”

She was lucky in the aftermath of Hurricane Helene: Baker lives on a hill in West Asheville that was untouched by floodwaters. In the week immediately after the storm, she filled water jugs every day at an old well near her house and brought them back in a wheelbarrow.  Though her power was out, she had plenty of food and neighbors looked in on her. 

“I’m absolutely fine,” she told me on the phone in early October after a member of Dementia Friendly Western North Carolina drove to Baker’s house to check in on her, upon my request. Baker is on the steering committee of that organization.

Baker once found it hard to ask for assistance, but these days she relies routinely on friends and hired help. A few examples: Elaine takes her grocery shopping every Monday. Roberta comes once a month to help with her mail and finances. Jack mows her lawn. Helen offers care management advice. Tom, a cab driver she connected with through Buncombe County’s transportation program for seniors, is her go-to guy for errands.

Her daughter Karen in Boston has the authority to make legal and health care decisions when Baker can no longer do so. When that day comes — and Baker knows it will — she expects her long-term care insurance policy to pay for home aides or memory care. Until then, “I plan to do as much as I can in the state I’m in,” she said.

Much can be done to better assist older adults with dementia who are on their own, said Elizabeth Gould, co-director of the National Alzheimer’s and Dementia Resource Center at RTI International, a nonprofit research institute. “If health care providers would just ask ‘Who do you live with?’” she said, “that could open the door to identifying who might need more help.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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“I didn’t know what I was going to do, where I was going to go,” he told me, describing a period of crisis that began in 2017.

Seeking a change of venue, Rousseau moved to the mountains of North Carolina, the start of an extended period of wandering. Soon, a sense of emptiness enveloped him. He had no friends or hobbies — his work as a doctor had been all-consuming. Former colleagues didn’t get in touch, nor did he reach out.

His wife had passed away after a painful illness a decade earlier. Rousseau was estranged from one adult daughter and in only occasional contact with another. His isolation mounted as his three dogs, his most reliable companions, died.

Rousseau was completely alone — without friends, family, or a professional identity — and overcome by a sense of loss.

“I was a somewhat distinguished physician with a 60-page resume,” Rousseau, now 73, wrote in the Journal of the American Geriatrics Society in May. “Now, I’m ‘no one,’ a retired, forgotten old man who dithers away the days.”

In some ways, older men living alone are disadvantaged compared with older women in similar circumstances. Research shows that men tend to have fewer friends than women and be less inclined to make new friends. Often, they’re reluctant to ask for help.

“Men have a harder time being connected and reaching out,” said Robert Waldinger, a psychiatrist who directs the Harvard Study of Adult Development, which has traced the arc of hundreds of men’s lives over a span of more than eight decades. The men in the study who fared the worst, Waldinger said, “didn’t have friendships and things they were interested in — and couldn’t find them.” He recommends that men invest in their “social fitness” in addition to their physical fitness to ensure they have satisfying social interactions.

Slightly more than 1 in every 5 men ages 65 to 74 live alone, according to 2022 Census Bureau data. That rises to nearly 1 in 4 for those 75 or older. Nearly 40% of these men are divorced, 31% are widowed, and 21% never married.

That’s a significant change from 2000, when only 1 in 6 older men lived by themselves. Longer life spans for men and rising divorce rates are contributing to the trend. It’s difficult to find information about this group — which is dwarfed by the number of women who live alone — because it hasn’t been studied in depth. But psychologists and psychiatrists say these older men can be quite vulnerable.

When men are widowed, their health and well-being tend to decline more than women’s.

“Older men have a tendency to ruminate, to get into our heads with worries and fears and to feel more lonely and isolated,” said Jed Diamond, 80, a therapist and the author of “Surviving Male Menopause” and “The Irritable Male Syndrome.”

Add in the decline of civic institutions where men used to congregate — think of the Elks or the Shriners — and older men’s reduced ability to participate in athletic activities, and the result is a lack of stimulation and the loss of a sense of belonging.

Depression can ensue, fueling excessive alcohol use, accidents, or, in the most extreme cases, suicide. Of all age groups in the United States, men over age 75 have the highest suicide rate, by far.

For this column, I spoke at length to several older men who live alone. All but two (who’d been divorced) were widowed. Their experiences don’t represent all men who live alone. But still, they’re revealing.

The first person I called was Art Koff, 88, of Chicago, a longtime marketing executive I’d known for several years. When I reached out in January, I learned that Koff’s wife, Norma, had died the year before, leaving him hobbled by grief. Uninterested in eating and beset by unremitting loneliness, Koff lost 45 pounds.

“I’ve had a long and wonderful life, and I have lots of family and lots of friends who are terrific,” Koff told me. But now, he said, “nothing is of interest to me any longer.”

“I’m not happy living this life,” he said.

Nine days later, I learned that Koff had died. His nephew, Alexander Koff, said he had passed out and was gone within a day. The death certificate cited “end stage protein calorie malnutrition” as the cause.

The transition from being coupled to being single can be profoundly disorienting for older men. Lodovico Balducci, 80, was married to his wife, Claudia, for 52 years before she died in October 2023. Balducci, a renowned physician known as the “patriarch of geriatric oncology,” wrote about his emotional reaction in the Journal of the American Geriatrics Society, likening Claudia’s death to an “amputation.”

“I find myself talking to her all the time, most of the time in my head,” Balducci told me in a phone conversation. When I asked him whom he confides in, he admitted, “Maybe I don’t have any close friends.”

Disoriented and disorganized since Claudia died, he said his “anxiety has exploded.”

We spoke in late February. Two weeks later, Balducci moved from Tampa to New Orleans, to be near his son and daughter-in-law and their two teenagers.

“I am planning to help as much as possible with my grandchildren,” he said. “Life has to go on.”

Verne Ostrander, a carpenter in the small town of Willits, California, about 140 miles north of San Francisco, was reflective when I spoke with him, also in late February. His second wife, Cindy Morninglight, died four years ago after a long battle with cancer.

“Here I am, almost 80 years old — alone,” Ostrander said. “Who would have guessed?”

When Ostrander isn’t painting watercolors, composing music, or playing guitar, “I fall into this lonely state, and I cry quite a bit,” he told me. “I don’t ignore those feelings. I let myself feel them. It’s like therapy.”

Ostrander has lived in Willits for nearly 50 years and belongs to a men’s group and a couples’ group that’s been meeting for 20 years. He’s in remarkably good health and in close touch with his three adult children, who live within easy driving distance.

“The hard part of living alone is missing Cindy,” he told me. “The good part is the freedom to do whatever I want. My goal is to live another 20 to 30 years and become a better artist and get to know my kids when they get older.”

The Rev. Johnny Walker, 76, lives in a low-income apartment building in a financially challenged neighborhood on Chicago’s West Side. Twice divorced, he’s been on his own for five years. He, too, has close family connections. At least one of his several children and grandchildren checks in on him every day.

Walker says he had a life-changing religious conversion in 1993. Since then, he has depended on his faith and his church for a sense of meaning and community.

“It’s not hard being alone,” Walker said when I asked whether he was lonely. “I accept Christ in my life, and he said that he would never leave us or forsake us. When I wake up in the morning, that’s a new blessing. I just thank God that he has brought me this far.”

Waldinger recommended that men “make an effort every day to be in touch with people. Find what you love — golf, gardening, birdwatching, pickleball, working on a political campaign — and pursue it,” he said. “Put yourself in a situation where you’re going to see the same people over and over again. Because that’s the most natural way conversations get struck up and friendships start to develop.”

Rousseau, the retired South Carolina doctor, said he doesn’t think about the future much. After feeling lost for several years, he moved across the country to Jackson, Wyoming, in the summer of 2023. He embraced solitude, choosing a remarkably isolated spot to live — a 150-square-foot cabin with no running water and no bathroom, surrounded by 25,000 undeveloped acres of public and privately owned land.

“Yes, I’m still lonely, but the nature and the beauty here totally changed me and focused me on what’s really important,” he told me, describing a feeling of redemption in his solitude.

Rousseau realizes that the death of his parents and a very close friend in his childhood left him with a sense of loss that he kept at bay for most of his life. Now, he said, rather than denying his vulnerability, he’s trying to live with it. “There’s only so long you can put off dealing with all the things you’re trying to escape from.”

It’s not the life he envisioned, but it’s one that fits him, Rousseau said. He stays busy with volunteer activities — cleaning tanks and running tours at Jackson’s fish hatchery, serving as a part-time park ranger, and maintaining trails in nearby national forests. Those activities put him in touch with other people, mostly strangers, only intermittently.

What will happen to him when this way of living is no longer possible?

“I wish I had an answer, but I don’t,” Rousseau said. “I don’t see my daughters taking care of me. As far as someone else, I don’t think there’s anyone else who’s going to help me.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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But her first marriage ended in divorce, and her second husband died more than 30 years ago. When a five-year relationship came to a close in 2006, she found herself alone — a situation that has lasted since.

“I miss having a companion who I can talk to and ask ‘How was your day?’ or ‘What do you think of what’s going on in the world?’” said Norington, who lives in an apartment building for seniors on the South Side of Chicago. Although she has a loving daughter in the city, “I don’t want to be a burden to her,” she said.

Norington is part of a large but often overlooked group: the more than 16 million Americans living alone while growing old. Surprisingly little is known about their experiences.

This slice of the older population has significant health issues: Nearly 4 in 10 seniors living alone have vision or hearing loss, difficulty caring for themselves and living independently, problems with cognition, or other disabilities, according to a KFF analysis of 2022 census data.

If help at home isn’t available when needed — an altogether too common problem — being alone can magnify these difficulties and contribute to worsening health.

Studies find that seniors on their own are at higher risk of becoming isolated, depressed, and inactive, having accidents, and neglecting to care for themselves. As a result, they tend to be hospitalized more often and suffer earlier-than-expected deaths.

Getting medical services can be a problem, especially if older adults living alone reside in rural areas or don’t drive. Too often, experts observe, health care providers don’t ask about older adults’ living situations and are unaware of the challenges they face.

***

During the past six months, I’ve spoken to dozens of older adults who live alone either by choice or by circumstance — most commonly, a spouse’s death. Some have adult children or other close relatives who are involved in their lives; many don’t.

In lengthy conversations, these seniors expressed several common concerns: How did I end up alone at this time of life? Am I OK with that? Who can I call on for help? Who can make decisions on my behalf if I’m unable to? How long will I be able to take care of myself, and what will happen when I can’t?

This “gray revolution” in Americans’ living arrangements is fueled by longer life spans, rising rates of divorce and childlessness, smaller families, the geographic dispersion of family members, an emphasis on aging in place, and a preference for what Eric Klinenberg, a professor of sociology at New York University, calls “intimacy at a distance” — being close to family, but not too close.

The most reliable, up-to-date data about older adults who live alone comes from the U.S. Census Bureau. According to its 2023 Current Population Survey, about 28% of people 65 and older live by themselves, including slightly fewer than 6 million men and slightly more than 10 million women. (The figure doesn’t include seniors living in institutions, primarily assisted living and nursing homes.)

By contrast, 1 in 10 older Americans lived on their own in 1950.

This is, first and foremost, an older women’s issue, because women outlive men and because they’re less likely to remarry after being widowed or divorcing. Twenty-seven percent of women ages 65 to 74 live alone, compared with 21% of men. After age 75, an astonishing 43% of women live alone, compared with only 24% for men.

The majority — 80% — of people who live alone after age 65 are divorced or widowed, twice the rate of the general population, according to KFF’s analysis of 2022 census data. More than 20% have incomes below $13,590, the federal poverty line in 2022, while 27% make between that and $27,180, twice the poverty level.

***

Of course, their experiences vary considerably. How older adults living alone are faring depends on their financial status, their housing, their networks of friends and family members, and resources in the communities where they live.

Attitudes can make a difference. Many older adults relish being independent, while others feel abandoned. It’s common for loneliness to come and go, even among people who have caring friends and family members.

“I like being alone better than I like being in relationships,” said Janice Chavez of Denver, who said she’s in her 70s. “I don’t have to ask anybody for anything. If I want to sleep late, I sleep late. If I want to stay up and watch TV, I can. I do whatever I want to do. I love the independence and the freedom.”

Chavez is twice divorced and has been on her own since 1985. As a girl, she wanted to be married and have lots of kids, but “I picked jerks,” she said. She talks to her daughter, Tracy, every day, and is close to several neighbors. She lives in the home she grew up in, inherited from her mother in 1991. Her only sibling, a brother, died a dozen years ago.

In Chicago, Norington is wondering whether to stay in her senior building or move to the suburbs after her car was vandalized this year. “Since the pandemic, fear has almost paralyzed me from getting out as much as I would like,” she told me.

She’s a take-charge person who has been deeply involved in her community. In 2016, Norington started an organization for single Black seniors in Chicago that sponsored speed dating events and monthly socials for several years. She volunteered with a local medical center doing outreach to seniors and brought health and wellness classes to her building. She organized cruises for friends and acquaintances to the Caribbean and Hawaii in 2022 and 2023.

Now, every morning, Norington sends a spiritual text message to 40 people, who often respond with messages of their own. “It helps me to feel less alone, to feel a sense of inclusion,” she said.

In Maine, Ken Elliott, 77, a retired psychology professor, lives by himself in a house in Mount Vernon, a town of 1,700 people 20 miles northwest of the state capital. He never married and doesn’t have children. His only living relative is an 80-year-old brother in California.

For several years, Elliott has tried to raise the profile of solo agers among Maine policymakers and senior organizations. This began when Elliott started inquiring about resources available to older adults living by themselves, like him. How were they getting to doctor appointments? Who was helping when they came home from the hospital and needed assistance? What if they needed extra help in the home but couldn’t afford it?

To Elliott’s surprise, he found this group wasn’t on anyone’s radar, and he began advocating on solo agers’ behalf.

Now, Elliott is thinking about how to put together a team of people who can help him as he ages in place — and how to build a stronger sense of community. “Aging without a mythic family support system — which everyone assumes people have — is tough for everybody,” Elliott said.

In Manhattan, Lester Shane, 72, who never married or had children, lives by himself in an 11-by-14-foot studio apartment on the third floor of a building without an elevator. He didn’t make much money during a long career as an actor, a writer, and a theater director, and he’s not sure how he’ll make ends meet once he stops teaching at Pace University.

“There are days when I’m carrying my groceries up three flights of stairs when I think, ‘This is really hard,’” Shane told me. Although his health is pretty good, he knows that won’t last forever.

“I’m on all the lists for senior housing — all lottery situations. Most of the people I’ve talked to said you will probably die before your number comes up,” he said with mordant humor.

Then, Shane turned serious. “I’m old and getting older, and whatever problems I have now are only going to get worse,” he said. As is the case for many older adults who live alone, his friends are getting older and having difficulties of their own.

The prospect of having no one he knows well to turn to is alarming, Shane admitted: “Underneath that is fear.”

Kate Shulamit Fagan, 80, has lived on her own since 1979, after two divorces. “It was never my intention to live alone,” she told me in a lengthy phone conversation. “I expected that I would meet someone and start another relationship and somehow sail off into the rest of my life. It’s been exceedingly hard to give up that expectation.”

When I first spoke to Fagan, in mid-March, she was having difficulty in Philadelphia, where she’d moved two years earlier to be close to one of her sons. “I’ve been really lonely recently,” she told me, describing how difficult it was to adjust to a new life in a new place. Although her son was attentive, Fagan desperately missed the close circle of friends she’d left behind in St. Petersburg, Florida, where she’d lived and worked for 30 years.

Four and a half months later, when I called Fagan again, she’d returned to St. Petersburg and was renting a one-bedroom apartment in a senior building in the center of the city. She’d celebrated her birthday there with 10 close friends and was meeting people in her building. “I’m not completely settled, but I feel fabulous,” she told me.

What accounted for the change? “Here, I know if I want to go out or I need help, quite a few people would be there for me,” Fagan said. “The fear is gone.”

As I explore the lives of older adults living alone in the next several months, I’m eager to hear from people who are in this situation. If you’d like to share your stories, please send them to khn.navigatingaging@gmail.com.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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The cost of services and therapies, and their ability to pay.

“It’s on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She’s a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

A new wave of research highlights the reach of these anxieties. When the University of Michigan’s National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan’s Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven’t come down, putting a strain on seniors living on fixed incomes.

Meanwhile, traditional Medicare doesn’t cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund’s 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can’t afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it’s more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it’s more difficult to afford basic necessities.”

This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn’t cover. According to Genworth’s latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a year’s worth of services from home-health aides cost $75,500.

Many older adults simply can’t afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That’s $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband’s heart medications, “we wouldn’t make it if my husband wasn’t still working,” she told me. (James’ monthly Social Security payment is $1,378. His premiums are similar to Connie’s and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.)

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn’t easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don’t want to be considered poor or unable to pay their bills, a blow to their pride. “What we try to say is, ‘You’ve worked hard all your life, you’ve paid your taxes. You’ve given back to this government so there’s nothing wrong with the government helping you out a bit.’”

And the unfortunate truth is there’s very little, if any, help available for seniors who aren’t poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don’t realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We’re already seeing people who’ve had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it’s going to get even better.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Late last year, the Biden administration promised to address this problem with a new effort called the White House Initiative on Women’s Health Research. That inspires a compelling question: What priorities should be on the initiative’s list when it comes to older women?

Stephanie Faubion, director of the Mayo Clinic’s Center for Women’s Health, launched into a critique when I asked about the current state of research on older women’s health. “It’s completely inadequate,” she told me.

One example: Many drugs widely prescribed to older adults, including statins for high cholesterol, were studied mostly in men, with results extrapolated to women.

“It’s assumed that women’s biology doesn’t matter and that women who are premenopausal and those who are postmenopausal respond similarly,” Faubion said.

“This has got to stop: The FDA has to require that clinical trial data be reported by sex and age for us to tell if drugs work the same, better, or not as well in women,” Faubion insisted.

Consider the Alzheimer’s drug Leqembi, approved by the FDA last year after the manufacturer reported a 27% slower rate of cognitive decline in people who took the medication. A supplementary appendix to a Leqembi study published in the New England Journal of Medicine revealed that sex differences were substantial — a 12% slowdown for women, compared with a 43% slowdown for men — raising questions about the drug’s effectiveness for women.

This is especially important because nearly two-thirds of older adults with Alzheimer’s disease are women. Older women are also more likely than older men to have multiple medical conditions, disabilities, difficulties with daily activities, autoimmune illness, depression and anxiety, uncontrolled high blood pressure, and osteoarthritis, among other issues, according to scores of research studies.

Even so, women are resilient and outlive men by more than five years in the U.S. As people move into their 70s and 80s, women outnumber men by significant margins. If we’re concerned about the health of the older population, we need to be concerned about the health of older women.

As for research priorities, here’s some of what physicians and medical researchers suggested:

Heart Disease

Why is it that women with heart disease, which becomes far more common after menopause and kills more women than any other condition — are given less recommended care than men?

“We’re notably less aggressive in treating women,” said Martha Gulati, director of preventive cardiology and associate director of the Barbra Streisand Women’s Heart Center at Cedars-Sinai, a health system in Los Angeles. “We delay evaluations for chest pain. We don’t give blood thinners at the same rate. We don’t do procedures like aortic valve replacements as often. We’re not adequately addressing hypertension.

“We need to figure out why these biases in care exist and how to remove them.”

Gulati also noted that older women are less likely than their male peers to have obstructive coronary artery disease — blockages in large blood vessels —and more likely to have damage to smaller blood vessels that remains undetected. When they get procedures such as cardiac catheterizations, women have more bleeding and complications.

What are the best treatments for older women given these issues? “We have very limited data. This needs to be a focus,” Gulati said.

Brain Health

How can women reduce their risk of cognitive decline and dementia as they age?

“This is an area where we really need to have clear messages for women and effective interventions that are feasible and accessible,” said JoAnn Manson, chief of the Division of Preventive Medicine at Brigham and Women’s Hospital in Boston and a key researcher for the Women’s Health Initiative, the largest study of women’s health in the U.S.

Numerous factors affect women’s brain health, including stress — dealing with sexism, caregiving responsibilities, and financial strain — which can fuel inflammation. Women experience the loss of estrogen, a hormone important to brain health, with menopause. They also have a higher incidence of conditions with serious impacts on the brain, such as multiple sclerosis and stroke.

“Alzheimer’s disease doesn’t just start at the age of 75 or 80,” said Gillian Einstein, the Wilfred and Joyce Posluns Chair in Women’s Brain Health and Aging at the University of Toronto. “Let’s take a life course approach and try to understand how what happens earlier in women’s lives predisposes them to Alzheimer’s.”

Mental Health

What accounts for older women’s greater vulnerability to anxiety and depression?

Studies suggest a variety of factors, including hormonal changes and the cumulative impact of stress. In the journal Nature Aging, Paula Rochon, a professor of geriatrics at the University of Toronto, also faulted “gendered ageism,” an unfortunate combination of ageism and sexism, which renders older women “largely invisible,” in an interview in Nature Aging.

Helen Lavretsky, a professor of psychiatry at UCLA and past president of the American Association for Geriatric Psychiatry, suggests several topics that need further investigation. How does the menopausal transition impact mood and stress-related disorders? What nonpharmaceutical interventions can promote psychological resilience in older women and help them recover from stress and trauma? (Think yoga, meditation, music therapy, tai chi, sleep therapy, and other possibilities.) What combination of interventions is likely to be most effective?

Cancer

How can cancer screening recommendations and cancer treatments for older women be improved?

Supriya Gupta Mohile, director of the Geriatric Oncology Research Group at the Wilmot Cancer Institute at the University of Rochester, wants better guidance about breast cancer screening for older women, broken down by health status. Currently, women 75 and older are lumped together even though some are remarkably healthy and others notably frail.

Recently, the U. S. Preventive Services Task Force noted “the current evidence is insufficient to assess the balance of benefits and harms of screening mammography in women 75 years or older,” leaving physicians without clear guidance. “Right now, I think we’re underscreening fit older women and overscreening frail older women,” Mohile said.

The doctor also wants more research about effective and safe treatments for lung cancer in older women, many of whom have multiple medical conditions and functional impairments. The age-sensitive condition kills more women than breast cancer.

“For this population, it’s decisions about who can tolerate treatment based on health status and whether there are sex differences in tolerability for older men and women that need investigation,” Mohile said.

Bone Health, Functional Health, and Frailty

How can older women maintain mobility and preserve their ability to take care of themselves?

Osteoporosis, which causes bones to weaken and become brittle, is more common in older women than in older men, increasing the risk of dangerous fractures and falls. Once again, the loss of estrogen with menopause is implicated.

“This is hugely important to older women’s quality of life and longevity, but it’s an overlooked area that is understudied,” said Manson of Brigham and Women’s.

Jane Cauley, a distinguished professor at the University of Pittsburgh School of Public Health who studies bone health, would like to see more data about osteoporosis among older Black, Asian, and Hispanic women, who are undertreated for the condition. She would also like to see better drugs with fewer side effects.

Marcia Stefanick, a professor of medicine at Stanford University School of Medicine, wants to know which strategies are most likely to motivate older women to be physically active. And she’d like more studies investigating how older women can best preserve muscle mass, strength, and the ability to care for themselves.

“Frailty is one of the biggest problems for older women, and learning what can be done to prevent that is essential,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Upward of 95% of patients experience these neuropsychiatric symptoms of dementia, which tend to fluctuate over time and vary in intensity. They’re the primary reasons people with dementia end up in assisted living facilities or nursing homes. At some point, families and friends trying to help at home simply can’t manage.

“When people think about dementia, they usually think about forgetfulness and memory impairment,” said Mary Blazek, director of the geriatric psychiatry clinic at the University of Michigan. “But it’s behavioral and psychological disturbances that are most disruptive to patients’ and caregivers’ lives.”

Now, help is available from a first-of-its-kind website created by prominent experts in this field. It offers free training in a comprehensive approach to managing neuropsychiatric symptoms of dementia — a method known as DICE — based on several decades of scientific research as well as extensive clinical practice.

The website’s goal is to “give people tools to better manage often-distressing situations,” said Helen Kales, chair of the Department of Psychiatry and Behavioral Sciences at UC Davis Health in Sacramento, California, and one of DICE’s creators. Users learn that neuropsychiatric symptoms are caused by changes in the brain that increase people’s vulnerability. Nine video modules and two simulations provide comprehensive information and problem-solving techniques.

More than 16 million unpaid caregivers — primarily family members and friends — help people with dementia live at home. (An estimated 20% of patients live in institutional settings.) The most common form of dementia, Alzheimer’s disease, affects nearly 7 million Americans 65 and older.

DICE is also designed to help “avoid the knee-jerk prescribing of psychoactive medications” that have potentially serious side effects, Kales said. Several medical organizations recommend that non-pharmaceutical approaches to troublesome behaviors be tried before drug therapy, but, in practice, this doesn’t routinely happen.

Drugs prescribed for dementia include antipsychotic medications, such as Risperidone, which carry a black-box warning noting an increased risk of sooner-than-expected death in elderly patients; anticonvulsants, such as gabapentin, for which use has been on the rise despite concerns about safety; benzodiazepines, such as Ativan, which are associated with an increased risk of falls and, thus, fractures; and Celexa and other such antidepressants that have limited data supporting their effectiveness in easing dementia symptoms.

DICE is a mnemonic — a pattern of letters meant to serve as a memory aid — that stands for Describe, Investigate, Create, and Evaluate, the four pillars of this approach. At its core is an assumption people with dementia engage in disturbing behaviors for often-unrecognized reasons that can be addressed once they are understood.

Take an example on the website featuring Jennifer, a 55-year-old caregiver for her mother, Betty, 85, whom she tries to bathe daily in the late afternoon. When Betty resists getting into the tub, Jennifer insists, “Let’s go! I have things to do.” Betty responds by smacking her and shouting, “Leave me alone. It hurts.”

DICE asks caregivers to step back from the heat of the moment and examine issues from three perspectives: the person with dementia, the caregiver, and the environment. All can contribute to distressing situations and all need to be considered in fashioning a response.

Examining the problem by using a “who, what, when, how, why” prompt can reveal several potential issues:

• The patient. Betty has arthritis and may experience pain getting in and out of the tub. She may feel tired and overwhelmed in the late afternoon.
• The caregiver. Jennifer may become easily frustrated when she encounters resistance — adopting a scolding and commanding tone rather than breaking down what Betty needs to do in simple steps.
• The environment. The bathroom tends to be cold, with overly bright lights, tepid bathwater, and no grab bars around the tub.

Some possible solutions discussed on the website: Offer Betty an over-the-counter pain reliever before her bath. Try baths in the morning, not the afternoon. Relax expectations that she’ll have a daily bath and offer sponge baths several times a week. Install grab bars around the tub, and make sure the water temperature is comfortable. Use a nicely scented soap and play music to help Betty relax. Speak calmly, making simple statements.

These embody strategies shown to improve neuropsychiatric symptoms associated with dementia: recognizing and addressing underlying medical issues such as pain, infections, or delirium; simplifying the tasks a person with dementia is expected to perform; and establishing daily routines that give structure to the day.

Other important steps: Engage the person in activities that are meaningful to them, including social interactions. Reduce clutter and the potential for overstimulation in the environment. Make sure the person is using hearing or vision aids, if needed. Get them outside and exposed to light.

If safety, psychosis, or major depression are urgent concerns, then consider using psychoactive medications after consulting a physician.

Of course, this isn’t a comprehensive list of recommendations. Nor is it prescriptive. What works for one person with dementia may not work for another.

Using DICE is an iterative process that involves creativity and frequent evaluation to assess whether strategies are working, Kales said. If not, new interventions should be tried.

Although this is the first time family caregivers can access the DICE toolkit, the program has been available to health care professionals for a while. Notably, all of Wisconsin’s dementia care specialists have been trained in DICE over the past few years (every county in that state has a specialist who helps families with dementia).

“It’s a really pragmatic approach that’s put together in a very thoughtful fashion,” said Art Walaszek, a professor of psychiatry and medicine at the University of Wisconsin School of Medicine and Public Health who’s been involved in that effort.

Other dementia training programs are available, some of which review behavioral and psychiatric symptoms in less depth, and they, too, are increasingly available online. Another valuable resource, Best Programs for Caregiving, launched in March, lists evidence-based programs across the country and their availability. Enter a ZIP code to find information that previously hasn’t been assembled in one place. This site, too, is very much worth consulting.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Pain shot through her left knee and ankle. After summoning her husband on her phone, with difficulty she made it back to the house.

And then began the run-around that so many people face when they interact with America’s uncoordinated health care system.

Gilliam’s orthopedic surgeon, who managed previous difficulties with her left knee, saw her that afternoon but told her “I don’t do ankles.”

He referred her to an ankle specialist who ordered a new set of X-rays and an MRI. For convenience’s sake, Gilliam asked to get the scans at a hospital near her home in Sudbury, Massachusetts. But the hospital didn’t have the doctor’s order when she called for an appointment. It came through only after several more calls.

Coordinating the care she needs to recover, including physical therapy, became a part-time job for Gilliam. (Therapists work on only one body part per session, so she has needed separate visits for her knee and for her ankle several times a week.)

“The burden of arranging everything I need — it’s huge,” Gilliam told me. “It leaves you with such a sense of mental and physical exhaustion.”

The toll the American health care system extracts is, in some respects, the price of extraordinary progress in medicine. But it’s also evidence of the poor fit between older adults’ capacities and the health care system’s demands.

“The good news is we know so much more and can do so much more for people with various conditions,” said Thomas H. Lee, chief medical officer at Press Ganey, a consulting firm that tracks patients’ experiences with health care. “The bad news is the system has gotten overwhelmingly complex.”

That complexity is compounded by the proliferation of guidelines for separate medical conditions, financial incentives that reward more medical care, and specialization among clinicians, said Ishani Ganguli, an associate professor of medicine at Harvard Medical School.

“It’s not uncommon for older patients to have three or more heart specialists who schedule regular appointments and tests,” she said. If someone has multiple medical problems — say, heart disease, diabetes, and glaucoma — interactions with the health care system multiply.

Ganguli is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. (The data is from 2019, before the covid pandemic disrupted care patterns. If any services were received, that counted as a day of health care contact.)

That study found that slightly more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year.

“Some of this may be very beneficial and valuable for people, and some of it may be less essential,” Ganguli said. “We don’t talk enough about what we’re asking older adults to do and whether that’s realistic.”

Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minnesota, has for many years raised an alarm about the “treatment burden” that patients experience. In addition to time spent receiving health care, this burden includes arranging appointments, finding transportation to medical visits, getting and taking medications, communicating with insurance companies, paying medical bills, monitoring health at home, and following recommendations such as dietary changes.

Four years ago — in a paper titled “Is My Patient Overwhelmed?” — Montori and several colleagues found that 40% of patients with chronic conditions such as asthma, diabetes, and neurological disorders “considered their treatment burden unsustainable.”

When this happens, people stop following medical advice and report having a poorer quality of life, the researchers found. Especially vulnerable are older adults with multiple medical conditions and low levels of education who are economically insecure and socially isolated.

Older patients’ difficulties are compounded by medical practices’ increased use of digital phone systems and electronic patient portals — both frustrating for many seniors to navigate — and the time pressures afflicting physicians. “It’s harder and harder for patients to gain access to clinicians who can problem-solve with them and answer questions,” Montori said.

Meanwhile, clinicians rarely ask patients about their capacity to perform the work they’re being asked to do. “We often have little sense of the complexity of our patients’ lives and even less insight into how the treatments we provide (to reach goal-directed guidelines) fit within the web of our patients’ daily experiences,” several physicians wrote in a 2022 paper on reducing treatment burden.

Consider what Jean Hartnett, 53, of Omaha, Nebraska, and her eight siblings went through after their 88-year-old mother had a stroke in February 2021 while shopping at Walmart.

At the time, the older woman was looking after Hartnett’s father, who had kidney disease and needed help with daily activities such as showering and going to the bathroom.

During the year after the stroke, both of Hartnett’s parents — fiercely independent farmers who lived in Hubbard, Nebraska — suffered setbacks, and medical crises became common. When a physician changed her mom’s or dad’s plan of care, new medications, supplies, and medical equipment had to be procured, and new rounds of occupational, physical, and speech therapy arranged.

Neither parent could be left alone if the other needed medical attention.

“It wasn’t unusual for me to be bringing one parent home from the hospital or doctor’s visit and passing the ambulance or a family member on the highway taking the other one in,” Hartnett explained. “An incredible amount of coordination needed to happen.”

Hartnett moved in with her parents during the last six weeks of her father’s life, after doctors decided he was too weak to undertake dialysis. He passed away in March 2022. Her mother died months later in July.

So, what can older adults and family caregivers do to ease the burdens of health care?

To start, be candid with your doctor if you think a treatment plan isn’t feasible and explain why you feel that way, said Elizabeth Rogers, an assistant professor of internal medicine at the University of Minnesota Medical School. 

“Be sure to discuss your health priorities and trade-offs: what you might gain and what you might lose by forgoing certain tests or treatments,” she said. Ask which interventions are most important in terms of keeping you healthy, and which might be expendable.

Doctors can adjust your treatment plan, discontinue medications that aren’t yielding significant benefits, and arrange virtual visits if you can manage the technological requirements. (Many older adults can’t.)

Ask if a social worker or a patient navigator can help you arrange multiple appointments and tests on the same day to minimize the burden of going to and from medical centers. These professionals can also help you connect with community resources, such as transportation services, that might be of help. (Most medical centers have staff of this kind, but physician practices do not.)

If you don’t understand how to do what your doctor wants you to do, ask questions: What will this involve on my part? How much time will this take? What kind of resources will I need to do this? And ask for written materials, such as self-management plans for asthma or diabetes, that can help you understand what’s expected.

“I would ask a clinician, ‘If I chose this treatment option, what does that mean not only for my cancer or heart disease, but also for the time I’ll spend getting care?’” said Ganguli of Harvard. “If they don’t have an answer, ask if they can come up with an estimate.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Sintió una punzada de dolor en la rodilla y el tobillo de la pierna izquierda. Después de llamar a su marido por teléfono, logró regresar a su casa con dificultad.

Y así comenzó el vaivén interminable que tantas personas enfrentan cuando tienen que navegar el desorganizado sistema de salud de Estados Unidos.

El cirujano ortopédico de Gilliam, que la había tratado antes por problemas en la misma rodilla, la vio esa tarde pero le aclaró: “Yo no me ocupo de tobillos”.

La derivó a un especialista en tobillos que ordenó nuevas radiografías y una resonancia magnética. Gilliam pidió hacerse las pruebas en un hospital cerca de su casa en Sudbury, Massachusetts, que le resultaba más conveniente. Pero cuando llamó para pedir una cita, el hospital no tenía la orden del doctor, que finalmente llegó después de varias llamadas más.

Coordinar la atención que necesita para recuperarse, incluyendo sesiones de fisioterapia, se convirtió en un trabajo de medio tiempo para Gilliam. (Los terapeutas trabajan solo en una parte del cuerpo por sesión, y por lo tanto Gilliam requiere visitas separadas para su rodilla y su tobillo, varias veces a la semana).

“El peso de organizar todo lo que necesito es enorme”, dijo Gilliam. “Te queda una sensación de agotamiento físico y mental”.

En algunos casos, las deficiencias del sistema de salud son el precio que se paga por avances extraordinarios en el campo de la medicina. Pero también ponen en evidencia las incoherencias entre las capacidades de los adultos mayores y las demandas del sistema.

“La buena noticia es que sabemos mucho más y podemos hacer mucho más por las personas con distintas afecciones”, dijo Thomas H. Lee, director médico de Press Ganey, una consultoría que hace seguimiento de las experiencias de los pacientes con el sistema de salud. “La mala noticia es que el sistema se ha vuelto tremendamente complejo”.

Esto se agrava por las múltiples guías para tratar afecciones, la super especialización médica, y los incentivos financieros que hacen que los pacientes reciban cada vez más atención, dijo Ishani Ganguli, profesora asociada en la Escuela de Medicina de Harvard.

“No es raro que pacientes mayores tengan tres o más cardiólogos que les programan citas y pruebas regulares”, dijo. Si alguien tiene varios problemas de salud (por ejemplo, enfermedades cardíacas, diabetes y glaucoma), las interacciones con el sistema se multiplican.

Ganguli es la autora de un nuevo estudio que muestra que los pacientes de Medicare dedican aproximadamente tres semanas al año a hacerse pruebas médicas, ver a doctores, someterse a tratamientos o procedimientos médicos, buscar atención en salas de emergencia o pasar tiempo en el hospital o en centros de rehabilitación. (Los datos son de 2019, antes de la pandemia de covid, que alteró   los patrones de atención médica. Cada servicio recibido se contó como un día de contacto con el sistema de salud).

El estudio determinó que poco más de 1 de cada 10 personas mayores, incluyendo las que se estaban haciendo controles o recuperándose de enfermedades graves, pasaban más tiempo recibiendo atención médica: al menos 50 días al año.

“Hay aspectos de esto que son muy beneficiosos y valiosos para las personas, pero hay otros que son menos esenciales”, dijo Ganguli. “No hablamos lo suficiente sobre lo que les pedimos a los adultos mayores que hagan, y si tiene sentido”.

Victor Montori, profesor de medicina de la Clínica Mayo en Rochester, Minnesota, lleva muchos años advirtiendo sobre lo que llama la “carga de tratamiento” que enfrentan los pacientes.

Esto incluye el tiempo que dedican a recibir atención médica, programar citas, encontrar transporte para las visitas médicas, obtener y tomar medicamentos, comunicarse con las aseguradoras, pagar facturas médicas, monitorear su salud en casa y seguir consejos como cambios en la dieta.

Hace cuatro años, en un artículo titulado “¿Se siente mi paciente agobiado?”, Montori y sus colegas descubrieron que el 40% de los pacientes con enfermedades crónicas como asma, diabetes y trastornos neurológicos “sentían que su carga de tratamiento era insostenible”.

Cuando la carga de tratamiento es excesiva, las personas dejan de seguir las recomendaciones médicas y dicen que su calidad de vida empeora, según los investigadores. Los adultos mayores con múltiples afecciones médicas y bajo nivel de educación son especialmente vulnerables, ya que experimentan inseguridad económica y aislamiento social.

El uso cada vez más frecuente de sistemas telefónicos digitales y portales electrónicos para pacientes en los consultorios y la falta de tiempo por parte de los doctores profundizan las barreras. “Cada vez es más difícil para los pacientes acceder a doctores que puedan pasar tiempo con ellos, para ayudarlos a resolver problemas y responder sus preguntas”, dijo Montori.

Mientras tanto, los médicos rara vez preguntan a los pacientes sobre su capacidad para realizar las tareas que se les pide. “A menudo tenemos poca idea de qué tan compleja es la vida de nuestros pacientes”, escribieron médicos en un informe de 2022 sobre cómo reducir la carga de tratamiento.

Un ejemplo es lo que vivieron Jean Hartnett, de 53 años de Omaha, Nebraska, y sus ocho hermanos después que su madre de 88 años sufriera un derrame cerebral en febrero de 2021, mientras hacían compras en Walmart.

En ese momento, su madre estaba cuidando al padre de Hartnett, quien sufría de una enfermedad renal y necesitaba ayuda con las tareas diarias, como ducharse o ir al baño.

Durante el año posterior al derrame cerebral, los padres de Hartnett, ambos trabajadores agrícolas extremadamente independientes que vivían en Hubbard, Nebraska, sufrieron varios achaques y las crisis médicas se volvieron comunes.

Cuando un médico cambiaba el plan de atención de su mamá o su papá, eran necesarios nuevos medicamentos, suministros y equipos médicos, y programar nuevas sesiones de terapia ocupacional, física y del habla.

Ninguno de los padres podía quedarse solo si el otro necesitaba atención médica.

“No era inusual para mí estar llevando a uno de mis padres a su casa después del hospital o de la visita al médico y pasar una ambulancia o un familiar transportando al otro al doctor”, explicó Hartnett. “Se necesitaba muchísima coordinación”.

Hartnett se mudó a la casa de sus padres durante las últimas seis semanas de vida de su padre, cuando  los médicos decidieron que estaba demasiado débil como para someterse a diálisis. Falleció en marzo de 2022. Su madre murió meses después, en julio.

Entonces, ¿qué pueden hacer los adultos mayores y sus cuidadores y familiares para aliviar la carga de la atención médica?

Para empezar, es importante sincerarse  con el médico si el plan de tratamiento que recomienda no resulta factible, y explicarle por qué, dijo Elizabeth Rogers, profesora asistente de medicina interna en la Escuela de Medicina de la Universidad de Minnesota.

Recomendó preguntar sobre cuáles intervenciones serían las más importantes para mantenerse saludable y cuáles podrían ser prescindibles.

Los médicos pueden ajustar los planes, suspender los medicamentos que no producen beneficios significativos y programar visitas virtuales, en caso de que las personas puedan manejar la tecnología necesaria (muchos adultos mayores no pueden).

Pregunte también si un asistente de pacientes (también llamados navegadores) puede ayudarle a programar varias citas y exámenes en el mismo día, para minimizar la carga de ir y venir de los centros médicos. Estos profesionales también pueden ayudarlo a conectarse con recursos comunitarios, como servicios de transporte. (La mayoría de los centros médicos tienen personal de este tipo, pero los consultorios médicos no).

Si no entiende cómo hacer lo que su médico pide, pregunte: ¿Qué implicaría esto de mi parte? ¿Cuánto tiempo llevaría? ¿Qué necesitaré? Y pida materiales escritos, como guías de autocontrol del asma o la diabetes, que puedan ayudarle a comprender mejor los requisitos.

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Every time my husband called his father, who was 94 when he died in 2022, he’d wait for his dad to find his hearing aids and put them in before they started talking.

Even then, my father-in-law could barely hear what my husband was saying. “What?” he’d ask over and over.

Then, there were the problems my father-in-law had replacing the devices’ batteries. And the times he’d end up in the hospital, unable to understand what people were saying because his hearing aids didn’t seem to be functioning. And the times he’d drop one of the devices and be unable to find it.

How many older adults have problems of this kind?

There’s no good data about this topic, according to Nicholas Reed, an assistant professor of epidemiology at Johns Hopkins Bloomberg School of Public Health who studies hearing loss. He did a literature search when I posed the question and came up empty.

Reed co-authored the most definitive study to date of hearing issues in older Americans, published in JAMA Open Network last year. Previous studies excluded people 80 and older. But data became available when a 2021 survey by the National Health and Aging Trends Study included hearing assessments conducted at people’s homes.

The results, based on a nationally representative sample of 2,803 people 71 and older, are eye-opening. Hearing problems become pervasive with advancing age, exceeding 90% in people 85 and older, compared with 53% of 71- to 74-year-olds. Also, hearing worsens over time, with more people experiencing moderate or severe deficits once they reach or exceed age 80, compared with people in their 70s.

However, only 29% of those with hearing loss used hearing aids. Multiple studies have documented barriers that inhibit use. Such devices, which Medicare doesn’t cover, are pricey, from nearly $1,000 for a good over-the-counter set (OTC hearing aids became available in 2022) to more than $6,000 for some prescription models. In some communities, hearing evaluation services are difficult to find. Also, people often associate hearing aids with being old and feel self-conscious about wearing them. And they tend to underestimate hearing problems that develop gradually.

Barbara Weinstein, a professor of audiology at the City University of New York Graduate Center and author of the textbook “Geriatric Audiology,” added another concern to this list when I reached out to her: usability.

“Hearing aids aren’t really designed for the population that most needs to use them,” she told me. “The move to make devices smaller and more sophisticated technologically isn’t right for many people who are older.”

That’s problematic because hearing loss raises the risk of cognitive decline, dementia, falls, depression, and social isolation.

What advice do specialists in hearing health have for older adults who have a hard time using their hearing aids? Here are some thoughts they shared.

Consider larger, customized devices. Many older people, especially those with arthritis, poor fine motor skills, compromised vision, and some degree of cognitive impairment, have a hard time manipulating small hearing aids and using them properly.

Lindsay Creed, associate director of audiology practices at the American Speech-Language-Hearing Association, said about half of her older clients have “some sort of dexterity issue, whether numbness or reduced movement or tremor or a lack of coordination.” Shekinah Mast, owner of Mast Audiology Services in Seaford, Delaware, estimates nearly half of her clients have vision issues.

For clients with dexterity challenges, Creed often recommends “behind-the-ear hearing aids,” with a loop over the ear, and customized molds that fit snugly in the ear. Customized earpieces are larger than standardized models.

“The more dexterity challenges you have, the better you’ll do with a larger device and with lots of practice picking it up, orienting it, and putting it in your ear,” said Marquitta Merkison, associate director of audiology practices at ASHA.

For older people with vision issues, Mast sometimes orders hearing aids in different colors for different ears. Also, she’ll help clients set up stands at home for storing devices, chargers, and accessories so they can readily find them each time they need them.

Opt for ease of use. Instead of buying devices that require replacing tiny batteries, select a device that can be charged overnight and operate for at least a day before being recharged, recommended Thomas Powers, a consultant to the Hearing Industries Association. These are now widely available.

People who are comfortable using a smartphone should consider using a phone app to change volume and other device settings. Dave Fabry, chief hearing health officer at Starkey, a major hearing aid manufacturer, said he has patients in their 80s and 90s “who’ve found that being able to hold a phone and use larger visible controls is easier than manipulating the hearing aid.”

If that’s too difficult, try a remote control. GN ReSound, another major manufacturer, has designed one with two large buttons that activate the volume control and programming for its hearing aids, said Megan Quilter, the company’s lead audiologist for research and development.

Check out accessories. Say you’re having trouble hearing other people in restaurants. You can ask the person across the table to clip a microphone to his shirt or put the mike in the center of the table. (The hearing aids will need to be programmed to allow the sound to be streamed to your ears.)

Another low-tech option: a hearing aid clip that connects to a piece of clothing to prevent a device from falling to the floor if it becomes dislodged from the ear.

Wear your hearing aids all day. “The No. 1 thing I hear from older adults is they think they don’t need to put on their hearing aids when they’re at home in a quiet environment,” said Erika Shakespeare, who owns Audiology and Hearing Aid Associates in La Grande, Oregon.

That’s based on a misunderstanding. Our brains need regular, not occasional, stimulation from our environments to optimize hearing, Shakespeare explained. This includes noises in seemingly quiet environments, such as the whoosh of a fan, the creak of a floor, or the wind’s wail outside a window.

“If the only time you wear hearing aids is when you think you need them, your brain doesn’t know how to process all those sounds,” she told me. Her rule of thumb: “Wear hearing aids all your waking hours.”

Consult a hearing professional. Everyone’s needs are different, so it’s a good idea to seek out an audiologist or hearing specialist who, for a fee, can provide guidance.

“Most older people are not going to know what they need” and what options exist without professional assistance, said Virginia Ramachandran, the head of audiology at Oticon, a major hearing aid manufacturer, and a past president of the American Academy of Audiology.

Her advice to older adults: Be “really open” about your challenges.

If you can’t afford hearing aids, ask a hearing professional for an appointment to go over features you should look for in over-the-counter devices. Make it clear you want the appointment to be about your needs, not a sales pitch, Reed said. Audiology practices don’t routinely offer this kind of service, but there’s good reason to ask since Medicare started covering once-a-year audiologist consultations last year.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).