This summer, at dinner with her best friend, Jacki Barden raised an uncomfortable topic: the possibility that she might die alone.

“I have no children, no husband, no siblings,” Barden remembered saying. “Who’s going to hold my hand while I die?”

Barden, 75, never had children. She’s lived on her own in western Massachusetts since her husband passed away in 2003. “You hit a point in your life when you’re not climbing up anymore, you’re climbing down,” she told me. “You start thinking about what it’s going to be like at the end.”

It’s something that many older adults who live alone — a growing population, more than 16 million strong in 2023 — wonder about. Many have family and friends they can turn to. But some have no spouse or children, have relatives who live far away, or are estranged from remaining family members. Others have lost dear friends they once depended on to advanced age and illness.

More than 15 million people 55 or older don’t have a spouse or biological children; nearly 2 million have no family members at all.

Still other older adults have become isolated due to sickness, frailty, or disability. Between 20% and 25% of older adults, who do not live in nursing homes, aren’t in regular contact with other people. And research shows that isolation becomes even more common as death draws near.

Who will be there for these solo agers as their lives draw to a close? How many of them will die without people they know and care for by their side?

Unfortunately, we have no idea: National surveys don’t capture information about who’s with older adults when they die. But dying alone is a growing concern as more seniors age on their own after widowhood or divorce, or remain single or childless, according to demographers, medical researchers, and physicians who care for older people.

“We’ve always seen patients who were essentially by themselves when they transition into end-of-life care,” said Jairon Johnson, the medical director of hospice and palliative care for Presbyterian Healthcare Services, the largest health care system in New Mexico. “But they weren’t as common as they are now.”

Attention to the potentially fraught consequences of dying alone surged during the covid-19 pandemic, when families were shut out of hospitals and nursing homes as older relatives passed away. But it’s largely fallen off the radar since then.

For many people, including health care practitioners, the prospect provokes a feeling of abandonment. “I can’t imagine what it’s like, on top of a terminal illness, to think I’m dying and I have no one,” said Sarah Cross, an assistant professor of palliative medicine at Emory University School of Medicine.

Cross’ research shows that more people die at home now than in any other setting. While hundreds of hospitals have “No One Dies Alone” programs, which match volunteers with people in their final days, similar services aren’t generally available for people at home.

Alison Butler, 65, is an end-of-life doula who lives and works in the Washington, D.C., area. She helps people and those close to them navigate the dying process. She also has lived alone for 20 years. In a lengthy conversation, Butler admitted that being alone at life’s end seems like a form of rejection. She choked back tears as she spoke about possibly feeling her life “doesn’t and didn’t matter deeply” to anyone.

Without reliable people around to assist terminally ill adults, there’s also an elevated risk of self-neglect and deteriorating well-being. Most seniors don’t have enough money to pay for assisted living or help at home if they lose the ability to shop, bathe, dress, or move around the house.

Nearly $1 trillion in cuts to Medicaid planned under President Donald Trump’s tax and spending law, previously known as the “One Big Beautiful Bill Act,” probably will compound difficulties accessing adequate care, economists and policy experts predict. Medicare, the government’s health insurance program for seniors, generally doesn’t pay for home-based services; Medicaid is the primary source of this kind of help for people who don’t have financial resources. But states may be forced to eviscerate Medicaid home-based care programs as federal funding diminishes.

“I’m really scared about what’s going to happen,” said Bree Johnston, a geriatrician and the director of palliative care at Skagit Regional Health in northwestern Washington state. She predicted that more terminally ill seniors who live alone will end up dying in hospitals, rather than in their homes, because they’ll lack essential services.

“Hospitals are often not the most humane place to die,” Johnston said.

While hospice care is an alternative paid for by Medicare, it too often falls short for terminally ill older adults who are alone. (Hospice serves people whose life expectancy is six months or less.) For one thing, hospice is underused: Fewer than half of older adults under age 85 take advantage of hospice services.

Also, “many people think, wrongly, that hospice agencies are going to provide person power on the ground and help with all those functional problems that come up for people at the end of life,” said Ashwin Kotwal, an associate professor of medicine in the division of geriatrics at the University of California-San Francisco School of Medicine.

Instead, agencies usually provide only intermittent care and rely heavily on family caregivers to offer needed assistance with activities such as bathing and eating. Some hospices won’t even accept people who don’t have caregivers, Kotwal noted.

That leaves hospitals. If seniors are lucid, staffers can talk to them about their priorities and walk them through medical decisions that lie ahead, said Paul DeSandre, the chief of palliative and supportive care at Grady Health System in Atlanta.

If they’re delirious or unconscious, which is often the case, staffers normally try to identify someone who can discuss what this senior might have wanted at the end of life and possibly serve as a surrogate decision-maker. Most states have laws specifying default surrogates, usually family members, for people who haven’t named decision-makers in advance.

If all efforts fail, the hospital will go to court to petition for guardianship, and the patient will become a ward of the state, which will assume legal oversight of end-of-life decision-making.

In extreme cases, when no one comes forward, someone who has died alone may be classified as “unclaimed” and buried in a common grave. This, too, is an increasingly common occurrence, according to “The Unclaimed: Abandonment and Hope in the City of Angels,” a book about this phenomenon, published last year.

Shoshana Ungerleider, a physician, founded End Well, an organization committed to improving end-of-life experiences. She suggested people make concerted efforts to identify seniors who live alone and are seriously ill early and provide them with expanded support. Stay in touch with them regularly through calls, video, or text messages, she said.

And don’t assume all older adults have the same priorities for end-of-life care. They don’t.

Barden, the widow in Massachusetts, for instance, has focused on preparing in advance: All her financial and legal arrangements are in order and funeral arrangements are made.

“I’ve been very blessed in life: We have to look back on what we have to be grateful for and not dwell on the bad part,” she told me. As for imagining her life’s end, she said, “it’s going to be what it is. We have no control over any of that stuff. I guess I’d like someone with me, but I don’t know how it’s going to work out.”

Some people want to die as they’ve lived — on their own. Among them is 80-year-old Elva Roy, founder of Age-Friendly Arlington, Texas, who has lived alone for 30 years after two divorces.

When I reached out, she told me she’d thought long and hard about dying alone and is toying with the idea of medically assisted death, perhaps in Switzerland, if she becomes terminally ill. It’s one way to retain a sense of control and independence that’s sustained her as a solo ager.

“You know, I don’t want somebody by my side if I’m emaciated or frail or sickly,” Roy said. “I would not feel comforted by someone being there holding my hand or wiping my brow or watching me suffer. I’m really OK with dying by myself.”

Subscribe to KFF Health News' free Morning Briefing

Bill Hall, 71, has been fighting for his life for 38 years. These days, he’s feeling worn out.

Hall contracted HIV, the virus that can cause AIDS, in 1986. Since then, he’s battled depression, heart disease, diabetes, non-Hodgkin lymphoma, kidney cancer, and prostate cancer. This past year, Hall has been hospitalized five times with dangerous infections and life-threatening internal bleeding.

But that’s only part of what Hall, a gay man, has dealt with. Hall was born into the Tlingit tribe in a small fishing village in Alaska. He was separated from his family at age 9 and sent to a government boarding school. There, he told me, he endured years of bullying and sexual abuse that “killed my spirit.”

Because of the trauma, Hall said, he’s never been able to form an intimate relationship. He contracted HIV from anonymous sex at bath houses he used to visit. He lives alone in Seattle and has been on his own throughout his adult life.

“It’s really difficult to maintain a positive attitude when you’re going through so much,” said Hall, who works with Native American community organizations. “You become mentally exhausted.”

It’s a sentiment shared by many older LGBTQ+ adults — most of whom, like Hall, are trying to manage on their own.

Of the 3 million Americans over age 50 who identify as gay, bisexual, or transgender, about twice as many are single and living alone when compared with their heterosexual counterparts, according to the National Resource Center on LGBTQ+ Aging.

This slice of the older population is expanding rapidly. By 2030, the number of LGBTQ+ seniors is expected to double. Many won’t have partners and most won’t have children or grandchildren to help care for them, AARP research indicates.

They face a daunting array of problems, including higher-than-usual rates of anxiety and depression, chronic stress, disability, and chronic illnesses such as heart disease, according to numerous research studies. High rates of smoking, alcohol use, and drug use — all ways people try to cope with stress — contribute to poor health.

Keep in mind, this generation grew up at a time when every state outlawed same-sex relations and when the American Psychiatric Association identified homosexuality as a psychiatric disorder. Many were rejected by their families and their churches when they came out. Then, they endured the horrifying impact of the AIDS crisis.

“Dozens of people were dying every day,” Hall said. “Your life becomes going to support groups, going to visit friends in the hospital, going to funerals.”

It’s no wonder that LGBTQ+ seniors often withdraw socially and experience isolation more commonly than other older adults. “There was too much grief, too much anger, too much trauma — too many people were dying,” said Vincent Crisostomo, director of aging services for the San Francisco AIDS Foundation. “It was just too much to bear.”

In an AARP survey of 2,200 LGBTQ+ adults 45 or older this year, 48% said they felt isolated from others and 45% reported lacking companionship. Almost 80% reported being concerned about having adequate social support as they grow older.

Embracing aging isn’t easy for anyone, but it can be especially difficult for LGBTQ+ seniors who are long-term HIV survivors like Hall.

Related Links

• Americans With HIV Are Living Longer. Federal Spending Isn’t Keeping Up. Jun 17, 2024
• ‘Stonewall Generation’ Confronts Old Age, Sickness — And Discrimination May 22, 2019
• Staying Out Of The Closet In Old Age Oct 17, 2016

Of 1.2 million people living with HIV in the United States, about half are over age 50. By 2030, that’s estimated to rise to 70%.

Christopher Christensen, 72, of Palm Springs, California, has been HIV-positive since May 1981 and is deeply involved with local organizations serving HIV survivors. “A lot of people living with HIV never thought they’d grow old — or planned for it — because they thought they would die quickly,” Christensen said.

Jeff Berry is executive director of the Reunion Project, an alliance of long-term HIV survivors. “Here people are who survived the AIDS epidemic, and all these years later their health issues are getting worse and they’re losing their peers again,” Berry said. “And it’s triggering this post-traumatic stress that’s been underlying for many, many years. Yes, it’s part of getting older. But it’s very, very hard.”

Being on their own, without people who understand how the past is informing current challenges, can magnify those difficulties.

“Not having access to supports and services that are both LGBTQ-friendly and age-friendly is a real hardship for many,” said Christina DaCosta, chief experience officer at SAGE, the nation’s largest and oldest organization for older LGBTQ+ adults.

Diedra Nottingham, a 74-year-old gay woman, lives alone in a one-bedroom apartment in Stonewall House, an LGBTQ+-friendly elder housing complex in New York City. “I just don’t trust people,“ she said. “And I don’t want to get hurt, either, by the way people attack gay people.”

When I first spoke to Nottingham in 2022, she described a post-traumatic-stress-type reaction to so many people dying of covid-19 and the fear of becoming infected. This was a common reaction among older people who are gay, bisexual, or transgender and who bear psychological scars from the AIDS epidemic.

Nottingham was kicked out of her house by her mother at age 14 and spent the next four years on the streets. The only sibling she talks with regularly lives across the country in Seattle. Four partners whom she’d remained close with died in short order in 1999 and 2000, and her last partner passed away in 2003.

When I talked to her in September, Nottingham said she was benefiting from weekly therapy sessions and time spent with a volunteer “friendly visitor” arranged by SAGE. Yet she acknowledged: “I don’t like being by myself all the time the way I am. I’m lonely.”

Donald Bell, a 74-year-old gay Black man who is co-chair of the Illinois Commission on LGBTQ Aging, lives alone in a studio apartment in subsidized LGBTQ+-friendly senior housing in Chicago. He spent 30 years caring for two elderly parents who had serious health issues, while he was also a single father, raising two sons he adopted from a niece.

Bell has very little money, he said, because he left work as a higher-education administrator to care for his parents. “The cost of health care bankrupted us,” he said. (According to SAGE, one-third of older LGBTQ+ adults live at or below 200% of the federal poverty level.) He has hypertension, diabetes, heart disease, and nerve damage in his feet. These days, he walks with a cane.

To his great regret, Bell told me, he’s never had a long-term relationship. But he has several good friends in his building and in the city.

“Of course I experience loneliness,” Bell said when we spoke in June. “But the fact that I am a Black man who has lived to 74, that I have not been destroyed, that I have the sanctity of my own life and my own person is a victory and something for which I am grateful.”

Now he wants to be a model to younger gay men and accept aging rather than feeling stuck in the past. “My past is over,” Bell said, “and I must move on.”

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).

Subscribe to KFF Health News' free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

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

The death toll was shocking, as were reports of chaos in nursing homes and seniors suffering from isolation, depression, untreated illness, and neglect. Around 900,000 older adults have died of covid-19 to date, accounting for 3 of every 4 Americans who have perished in the pandemic.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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).

Subscribe to KFF Health News' free Morning Briefing.