Sociologist Elena Portacolone was taken aback. Many of the older adults in San Francisco she visited at home for a research project were confused when she came to the door. They’d forgotten the appointment or couldn’t remember speaking to her.

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.

At age 66, South Carolina physician Paul Rousseau decided to retire after tending for decades to the suffering of people who were seriously ill or dying. It was a difficult and emotionally fraught transition.

“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.

Montana is looking to fast-track Medicaid access for older adults who need help to stay in their homes or towns.

Medicaid, the joint federal-state health care program for low-income Americans, opens the door to services such as paying for help to prepare meals or shower safely. But applying for and obtaining that coverage can take weeks or months, leaving aging people in a dangerous limbo: too vulnerable to live at home without assistance, but too healthy to merit a hospital or nursing home bed.

Montana lawmakers drafted a bill for the legislative session that begins in January that would create a shortcut to that care. The Children, Families, Health, and Human Services Interim Committee’s proposal would allow older people and those with a physical disability who are likely eligible for Medicaid to start receiving in-home and community-based care while awaiting final approval.

The goal of presumptive eligibility is to avoid delays in providing stabilizing care outside of medical facilities. Supporters of the plan say local care is also a lot less expensive than hospital or nursing home care.

Montana would join at least 11 states that have presumptive eligibility for seniors and people with disabilities to access in-home care, according to AARP. Washington state began expediting Medicaid coverage in 2023 for people recently discharged from a hospital and plans to expand coverage further. Rhode Island authorizes such benefits to new long-term care applicants. And a law signed last winter in New Jersey means seniors there will have similar access.

People who are hospitalized or checked into a nursing home can struggle to find the middle-ground option for care they need.

Katy Mack, a spokesperson for the Montana Hospital Association, said bottlenecks in the process are difficult for patients, long-term care providers, and hospitals.

“Many elderly patients do ‘get stuck’ in hospitals waiting for transfer to a more appropriate level of care,” Mack said in an email. “This is due to a variety of issues, including staffing, bed availability, and appropriate payments from the patient’s source of health coverage.”

Tyler Amundson, executive director of Big Sky Senior Services, a nonprofit that helps seniors stay in their home, said in one case, a couple without the support they needed ended up in the hospital dozens of times over two months.

“There are a lot of seniors in our community struggling,” Amundson said. “They’ll go home from a hospital with just enough care to get by for a little while.”

The nation’s pool of older Americans is getting bigger. With age comes more medical complications. People 65 or older have the highest rate of preventable hospitalizations, and medical emergencies risk worse health outcomes.

Rising health care costs are fueling anxiety among tens of millions of seniors, with 1 in 10 living below the federal poverty level. Older adults are struggling to pay the combined cost of housing and medical care, and some become homeless.

For years, states have had the option through the Affordable Care Act to allow qualified hospitals to extend presumptive eligibility to some adults based on their income, on top of the opportunity that most states give pregnant women and children. But in states such as Montana, people 65 and older haven’t been included. States need a federal waiver to expand who qualifies for that early access.

Alice Burns, who researches Medicaid issues at KFF, a health information nonprofit that includes KFF Health News, said widening presumptive eligibility for in-home and community-based care gained momentum during the covid-19 pandemic.

“It’s easy to understand why,” Burns said. “When we had the fatality rates in nursing facilities that we did, it was like, OK, we cannot send these people to the nursing facilities unnecessarily.”

The Montana proposal would, after state training, allow tribal entities, area agencies on aging, and hospitals, among others, to screen patients for presumptive eligibility. Approved patients would begin receiving services while state health officials review their applications.

The draft bill spells out some covered services, such as meal delivery and in-home medical equipment. Lawmakers noted it’s not clear if the proposal would help people move into long-term care, such as assisted living facilities, which offer daily support rather than medical treatment.

Montana officials don’t have an estimate for how much the temporary coverage would cost. Jon Ebelt, a spokesperson for the Montana Department of Public Health and Human Services, declined to comment on the proposal.

Mike White is a co-owner of Caslen Living Centers, which has six small assisted living facilities across central and southwestern Montana. His company no longer accepts Medicaid applicants until their coverage is final, and White said it’s not alone. He said that process can take anywhere from three to six months due to cumbersome paperwork, which he said is too long for small businesses to go without pay.

State officials have said delays in Medicaid approval often stem from ongoing communication with applicants.

The state’s Medicaid program has gone through major upheaval in the past year as states nationwide reviewed eligibility for everyone on the program. Montana officials dropped more than 115,300 people from coverage in that process, according to the state’s final report. Those disenrollments continued as nonprofits and patients alike cited problems in the state’s process, including delays in application processing and access to help for other safety net services.

Now, state lawmakers predict a major political fight during the legislative session over whether to continue to allow expanded Medicaid access to people who earn up to 138% of the federal poverty level, or about $43,000 a year for a family of four.

State Rep. Mike Yakawich, the Billings Republican behind the presumptive eligibility proposal, said he wants to keep some of its language vague. He’s leaving room for negotiations and potential amendments during the legislative session and beyond.

“The focus is to keep people at home, and it’s still going to be a hard lift to get it past the session,” Yakawich said. “We can add more to it two years from now.”

Not everyone on the interim committee was on board.

Sen. Daniel Emrich, a Republican from Great Falls, voted against the policy, saying it sounded too much like a gamble for families.

“We run the risk of taking and providing a service that’s then going to be pulled out from under them,” Emrich said.

The counterargument is that such cases would be rare. Burns, with KFF, said there is no reliable data nationally to show how often people are denied Medicaid after being presumed eligible. Presumptive access to Medicaid in-home programs is relatively new. And, from hospital data for other patients, it’s difficult to know whether a person was denied Medicaid because they didn’t qualify or because they didn’t complete the paperwork after leaving the hospital.

“There’s all these places where the ball could get dropped,” Burns said.

She said the difference with measures like Montana’s is that support services follow patients in their daily life, making it less likely patients would fall off the radar.

Gerri Norington, de 78 años, nunca quiso estar sola al envejecer.

Pero su primer matrimonio acabó en divorcio y su segundo marido murió hace más de 30 años. Cuando una relación de cinco años llegó a su fin en 2006, se encontró sola, y así sigue desde entonces.

“Echo de menos tener un compañero con el que poder hablar y preguntarle ‘¿Qué tal el día?’ o ‘¿Qué opinas de lo que pasa en el mundo?’”, dijo Norington, que vive en un edificio de apartamentos para mayores en el South Side de Chicago. Aunque tiene una hija que la adora en la ciudad, “no quiero ser una carga para ella”, agregó.

Norington forma parte de un grupo numeroso, pero a menudo ignorado: los más de 16 millones de estadounidenses que viven solos mientras envejecen. Sorprendentemente, se sabe muy poco sobre sus experiencias.

Este grupo de la población de edad avanzada tiene importantes problemas de salud. Casi 4 de cada 10 personas mayores que viven solas sufren pérdida de visión o audición, dificultades para cuidar de sí mismos y vivir de forma independiente, problemas de cognición u otras discapacidades, según un análisis de KFF de los datos del censo de 2022.

Si no se tiene ayuda en casa cuando se necesita —un problema demasiado frecuente—, estar solo puede agravar estas dificultades y contribuir para empeorar la salud.

Los estudios revelan que las personas mayores que viven solas corren un mayor riesgo de aislamiento, depresión e inactividad, de sufrir accidentes y de no prestar atención a su cuidado personal. Como consecuencia, suelen ser hospitalizados con más frecuencia y mueren de manera prematura.

Conseguir servicios médicos puede ser un problema, sobre todo si los adultos mayores viven solos en zonas rurales o no conducen. Expertos observan que, con demasiada frecuencia, los profesionales de salud no les preguntan a sus pacientes mayores por su situación y desconocen los problemas a los que se enfrentan.

En los últimos seis meses, he hablado con docenas de personas mayores que viven solas por decisión propia o por las circunstancias, en la mayoría de los casos, la muerte del cónyuge. Algunos tienen hijos adultos u otros parientes cercanos que participan en sus vidas; muchos no.

En largas conversaciones, los mayores expresaron varias preocupaciones comunes: ¿Cómo he podido quedarme solo a esta altura de la vida? ¿Estoy bien así? ¿A quién puedo pedir ayuda? ¿Quién puede tomar decisiones en mi nombre si yo no puedo? ¿Durante cuánto tiempo podré cuidar de mí mismo y qué pasará cuando ya no pueda?

Esta “revolución gris” en las condiciones de vida de los estadounidenses es resultado de la mayor longevidad, el aumento de las tasas de divorcio y la falta de hijos, las familias más pequeñas, la dispersión geográfica de los miembros de la familia, el énfasis en envejecer en casa y la preferencia por lo que Eric Klinenberg, profesor de sociología de la Universidad de Nueva York, denomina “intimidad a distancia”: estar cerca de la familia, pero no demasiado.

Los datos más fiables y actualizados sobre las personas mayores que viven solas son de la Oficina del Censo de Estados Unidos. Según su Encuesta de Población Actual de 2023, alrededor del 28% de las personas mayores de 65 años viven solas, lo que incluye cerca de 6 millones de hombres y algo más de 10 millones de mujeres. (La cifra no incluye a los adultos mayores que viven en instituciones, principalmente residencias de vida asistida).

En cambio, 1 de cada 10 estadounidenses mayores vivía solo en 1950.

Se trata, ante todo, de un problema de las mujeres mayores, porque viven más que los hombres y tienen menos probabilidades de volver a casarse luego de enviudar o divorciarse. El 27% de las mujeres de 65 a 74 años viven solas, frente al 21% de los hombres. A partir de los 75 años, un sorprendente 43% de las mujeres viven solas, frente a sólo el 24% de los hombres.

La mayoría —el 80%— de las personas que viven solas después de los 65 son divorciadas o viudas, el doble que la población general, según el análisis de KFF de los datos del censo de 2022. Más del 20% tiene ingresos inferiores a $13,590, el umbral federal de pobreza en 2022, mientras que el 27% gana entre esa cantidad y $27,180 que es el doble del nivel de pobreza.

Por supuesto, sus experiencias varían considerablemente. La situación de las personas mayores que viven solas depende de su situación económica, su vivienda, sus redes de amistades y familiares, y los recursos de las comunidades en las que viven.

Las actitudes pueden marcar la diferencia. Muchos mayores disfrutan siendo independientes, mientras que otros se sienten abandonados. Es habitual que la soledad vaya y venga, incluso entre personas que tienen amigos y familiares que se preocupan por ellas.

“Me gusta más estar sola que en pareja”, dijo Janice Chávez, de Denver, que tiene más de 70 años. “No tengo que pedirle nada a nadie. Si quiero dormir hasta tarde, duermo hasta tarde. Si quiero quedarme despierta viendo la tele, puedo. Hago lo que me da la gana. Me encanta la independencia y la libertad”.

Chávez se ha divorciado dos veces y vive sola desde 1985. De niña quería casarse y tener muchos hijos, pero “elegí a imbéciles”, comentó. Habla con su hija, Tracy, todos los días, y está muy unida a varios vecinos. Vive en la casa en la que creció, heredada de su madre en 1991. Su único hermano falleció hace 12 años.

En Chicago, Norington duda entre quedarse a vivir en su edificio para personas mayores o mudarse a las afueras, después que vandalizaran su auto varias veces este año. “Desde la pandemia, el miedo me ha impedido salir tanto como me gustaría”, explicó.

Es una persona con iniciativa y que se ha implicado a fondo en su comunidad. En 2016, Norington puso en marcha una organización para personas mayores negras y solteras en Chicago que patrocinó eventos de citas rápidas y reuniones sociales mensuales durante varios años. Trabajó como voluntaria en un centro médico local en actividades de divulgación para personas mayores, y clases de salud y bienestar a su edificio. Organizó cruceros para amigos y conocidos al Caribe y Hawaii en 2022 y 2023.

Ahora, cada mañana, envía un mensaje de texto espiritual a 40 personas, que a menudo responden con mensajes propios. “Me ayuda a sentirme menos sola, a tener una sensación de inclusión”, afirmó.

En Maine, Ken Elliott, de 77 años, profesor universitario de psicología jubilado, vive solo en una casa de Mount Vernon, un pueblo de 1,700 habitantes a 20 millas al noroeste de la capital del estado. Nunca se casó y no tiene hijos. Su único pariente vivo es un hermano de 80 años que vive en California.

Durante varios años, Elliott ha intentado dar a conocer la problemática de los mayores que viven solos entre los responsables políticos y las organizaciones de mayores de Maine. Todo empezó cuando Elliott comenzó a interesarse por los recursos disponibles para las personas mayores que viven solas, como él. ¿Cómo iban a sus citas médicas? ¿Quién los ayudaba cuando volvían del hospital y necesitaban ayuda? ¿Y si necesitaban ayuda extra en casa pero no podían permitírsela?

Para sorpresa de Elliott, descubrió que este grupo no estaba en el radar de nadie, y empezó a abogar en su nombre.

Ahora, intenta formar un equipo de personas que puedan ayudarle a envejecer en casa y aspira a crear un sentimiento de comunidad más fuerte. “Envejecer sin un mítico sistema de apoyo familiar —que todo el mundo da por sentado que la gente tiene— es duro para todos”, aseguró Elliott.

En Manhattan, Lester Shane, de 72 años, que nunca se casó ni tuvo hijos, vive solo en un estudio de 11 por 14 pies, en la tercera planta de un edificio sin ascensor. No ganó mucho dinero durante una larga carrera como actor, escritor y director teatral, y no está seguro de cómo llegará a fin de mes cuando deje de dar clases en la Universidad Pace.

Dijo que “hay días en los que estoy subiendo las bolsas de las compras por tres tramos de escaleras y pienso: ‘Esto es muy duro’”. Aunque su salud es bastante buena, sabe que eso no durará para siempre.

“Estoy en todas las listas de viviendas para mayores, y en todas las loterías. La mayoría de las personas con las que he hablado me han dicho que probablemente moriré antes de que salga mi número”, contó con ironía.

Luego, Shane se puso serio. “Soy cada vez más mayor, y los problemas que tengo ahora sólo van a empeorar”, afirmó. Como les ocurre a muchas personas mayores que viven solas, sus amigos también están envejeciendo y tienen sus propias dificultades.

La perspectiva de no tener a nadie que conozca bien a quien recurrir es alarmante, admitió Shane: “Eso te llena de miedo”.

Kate Shulamit Fagan, de 80 años, vive sola desde 1979, tras dos divorcios. “Nunca fue mi intención vivir sola”, dijo durante una larga conversación telefónica. “Esperaba conocer a alguien, empezar otra relación y, de algún modo, seguir adelante por el resto de mi vida. Ha sido muy duro renunciar a esa expectativa”.

La primera vez que hablé con Fagan, a mediados de marzo, tenía dificultades en Philadelphia, adonde se había mudado dos años antes para estar cerca de uno de sus hijos. “Últimamente me he sentido muy sola”, dijo, describiendo lo difícil que era adaptarse a una nueva vida en un nuevo lugar. Aunque su hijo estaba atento, Fagan echaba desesperadamente de menos el estrecho círculo de amigos que había dejado atrás en St. Petersburg, Florida, donde había vivido y trabajado durante 30 años.

Cuatro meses y medio más tarde, cuando volví a llamar a Fagan, había regresado a St. Petersburg y alquilaba un apartamento de una habitación en un edificio para personas mayores en el centro de la ciudad. Había celebrado allí su cumpleaños con 10 amigos íntimos y estaba conociendo a gente en su edificio. “No estoy completamente instalada, pero me siento fabulosa”, me dijo.

¿A qué se debe este cambio? “Aquí sé que si quiero salir o necesito ayuda, puedo contar con un grupo de personas”, explicó Fagan. “El miedo ha desaparecido”.

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Gerri Norington, 78, never wanted to be on her own as she grew old.

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 [email protected].

Missoula is one of Montana’s largest cities but is surrounded by rural mountain communities where cattle ranching is king. Despite the latitude and altitude, in recent years this region has experienced punishing summer heat waves.

It has been difficult for residents to adapt to the warming climate and new seasonal swings. Many don’t have air conditioning and are unprepared for the new pattern of daytime temperatures hovering in the 90s — for days or even weeks on end. Dehydration, heat exhaustion, heatstroke, and abnormalities in heart rate and blood pressure are among the many health complications that can develop from excessive exposure to high temperatures.

It can happen anywhere and to anyone, said Missoula firefighter Andrew Drobeck. He remembers a recent 911 call. The temperature that day had risen to over 90 degrees and a worker at a local dollar store had fainted. “She’s sensitive to the heat. Their AC wasn’t working super good,” Drobeck said. “I guess they only get a 15-minute break.”

Drobeck said many of the heat calls his department receives are from seniors who struggle to stay cool inside their older homes. Montana’s population is among the oldest in the country. About 1 in 4 residents are over 60. Those over 65 are especially vulnerable to heat-related illness, according to the Centers for Disease Control and Prevention. As people age, their bodies don’t acclimate to heat as well as they did when they were younger, including not producing as much sweat.

In July, a heat dome that settled over much of the western U.S. baked the region and shattered two types of temperature records: daily highs, and number of consecutive days over 90 degrees. Although the Northwest, including western Montana, is typically cooler, the region experienced record-breaking heat this summer.

Emergency responders like Drobeck have noticed. Drobeck says 911 calls during heat waves have ticked up over the last few summers. But Missoula County officials wanted to know more: They wanted better data on the residents who were calling and the communities that had been hardest hit by the heat. So the county teamed up with researchers at the University of Montana to comb through the data and create a map of 911 calls during heat waves.

The team paired call data from 2020 with census data to see who lived in the areas generating high rates of emergency calls when it was hot. The analysis found that for every 1 degree Celsius increase in the average daily temperature, 911 calls increased by 1%, according to researcher Christina Barsky, who co-authored the study.

Though that may sound like a small increase, Barsky explained that a 5-degree jump in the daily average temperature can prompt hundreds of additional calls to 911 over the course of a month. Those call loads can be taxing on ambulance crews and local hospitals.

The Missoula study also found that some of the highest rates of emergency calls during extreme heat events came from rural areas, outside Missoula’s urban core. That shows that rural communities are struggling with heat, even if they get less media attention, Barsky said. “What about those people, right? What about those places that are experiencing heat at a rate that we’ve never been prepared for?” she said.

Barsky’s work showed that communities with more residents over 65 tend to generate more 911 calls during heat waves. That could be one reason so many 911 calls are coming from rural residents in Missoula County: Barsky said people living in Montana’s countryside and its small towns tend to be older and more vulnerable to serious heat-related illness.

And aging in rural communities can pose extra problems during heat waves. Even if it cools off at night, an older person living without air conditioning might not be able to cope with hours of high temperatures inside their home during the day. It’s not uncommon for rural residents to have to drive an hour or more to reach a library that might have air conditioning, a community center with a cooling-off room, or medical care. Such isolation and scattered resources are not unique to Montana. “I grew up in the Upper Peninsula of Michigan,” Barsky said. “There are no air-conditioned spaces in at least 50 miles. The hospital is 100 miles away.”

Heat research like the Missoula study has focused mostly on large cities, which are often hotter than outlying areas, due to the “heat island” effect. This phenomenon explains why cities tend to get hotter during the day and cool off less at night: It’s because pavement, buildings, and other structures absorb and retain heat. Urban residents may experience higher temperatures during the day and get less relief at night.

By contrast, researchers are only just beginning to investigate and understand the impacts of heat waves in rural areas. The impacts of extreme heat on rural communities have largely been ignored, said Elizabeth Doran, an environmental engineering professor at the University of Vermont. Doran is leading an ongoing study in Vermont that is revealing that towns as small as 5,000 people can stay hotter at night than surrounding rural areas due to heat radiating off hot pavement. “If we as a society are only focused on large urban centers, we’re missing a huge portion of the population and our strategies are going to be limiting in how effective they can be,” Doran said.

Brock Slabach, with the National Rural Health Association, agrees that rural residents desperately need help adapting to extreme heat. They need support installing air conditioning or getting to air-conditioned places to cool off during the day. Many rural residents have mobility issues or don’t drive much due to age or disability. And because they often have to travel farther to access health care services, extra delays in care during a heat-related emergency could lead to more severe health outcomes. “It’s not unreasonable at all to suggest that people will be harmed from not having access to those kinds of services,” he said.

Helping rural populations adapt will be a challenge. People in rural places need help where they live, inside their homes, said Adriane Beck, director of Missoula County’s Office of Emergency Management. Starting a cooling center in a small community may help people living in town, but it’s unrealistic to expect people to drive an hour or more to cool off. Beck said the Missoula County Disaster and Emergency Services Department plans to use data from the 911 study to better understand why people are calling in the first place.

In the coming years, the department plans to talk directly with people living in rural communities about what they need to adapt to rising temperatures. “It might be as simple as knocking on their door and saying, ‘Would you benefit from an air conditioner? How can we connect you with resources to make that happen?’” Beck said.

But that won’t be possible for every rural household because there simply isn’t enough money at the county and state level to pay for that many air-conditioning units, Missoula County officials said. That’s why the county wants to plan ahead for heat waves and have specific protocols for contacting and assisting vulnerable rural residents.

“Ideally we’d be in a situation where maybe we have community paramedics that can be deployed into those areas when we know that these events are going to happen so they can check on them and avoid that hospital admission,” Beck explained. She added that preventing heat-related hospitalizations among rural residents can ultimately save lives.

This article is from a partnership that includes MTPR, NPR, and KFF Health News.

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A decade ago, federal officials drafted a plan to discourage Medicare Advantage health insurers from overcharging the government by billions of dollars — only to abruptly back off amid an “uproar” from the industry, newly released court filings show.

The Centers for Medicare & Medicaid Services published the draft regulation in January 2014. The rule would have required health plans, when examining patient’s medical records, to identify overpayments by CMS and refund them to the government.

But in May 2014, CMS dropped the idea without any public explanation. Newly released court depositions show that agency officials repeatedly cited concern about pressure from the industry.

The 2014 decision by CMS, and events related to it, are at the center of a multibillion-dollar Justice Department civil fraud case against UnitedHealth Group pending in federal court in Los Angeles.

The Justice Department alleges the giant health insurer cheated Medicare out of more than $2 billion by reviewing patients’ records to find additional diagnoses, adding revenue while ignoring overcharges that might reduce bills. The company “buried its head in the sand and did nothing but keep the money,” DOJ said in a court filing.

Medicare pays health plans higher rates for sicker patients but requires that the plans bill only for conditions that are properly documented in a patient’s medical records.

In a court filing, UnitedHealth Group denies wrongdoing and argues it shouldn’t be penalized for “failing to follow a rule that CMS considered a decade ago but declined to adopt.”

This month, the parties in the court case made public thousands of pages of depositions and other records that offer a rare glimpse inside the Medicare agency’s long-running struggle to keep the private health plans from taking taxpayers for a multibillion-dollar ride.

“It’s easy to dump on Medicare Advantage plans, but CMS made a complete boondoggle out of this,” said Richard Lieberman, a Colorado health data analytics expert.

Spokespeople for the Justice Department and CMS declined to comment for this article. In an email, UnitedHealth Group spokesperson Heather Soule said the company’s “business practices have always been transparent, lawful and compliant with CMS regulations.”

Missed Diagnoses

Medicare Advantage insurance plans have grown explosively in recent years and now enroll about 33 million members, more than half of people eligible for Medicare. Along the way, the industry has been the target of dozens of whistleblower lawsuits, government audits, and other investigations alleging the health plans often exaggerate how sick patients are to rake in undeserved Medicare payments — including by doing what are called chart reviews, intended to find allegedly missed diagnosis codes.

By 2013, CMS officials knew some Medicare health plans were hiring medical coding and analytics consultants to aggressively mine patient files — but they doubted the agency’s authority to demand that health plans also look for and delete unsupported diagnoses.

The proposed January 2014 regulation mandated that chart reviews “cannot be designed only to identify diagnoses that would trigger additional payments” to health plans.

CMS officials backed down in May 2014 because of “stakeholder concern and pushback,” Cheri Rice, then director of the CMS Medicare plan payment group, testified in a 2022 deposition made public this month. A second CMS official, Anne Hornsby, described the industry’s reaction as an “uproar.”

Exactly who made the call to withdraw the chart review proposal isn’t clear from court filings so far.

“The direction that we received was that the rule, the final rule, needed to include only those provisions that had wide, you know, widespread stakeholder support,” Rice testified.

“So we did not move forward then,” she said. “Not because we didn’t think it was the right thing to do or the right policy, but because it had mixed reactions from stakeholders.”

The CMS press office declined to make Rice available for an interview. Hornsby, who has since left the agency, declined to comment.

But Erin Fuse Brown, a professor at the Brown University School of Public Health, said the decision reflects a pattern of timid CMS oversight of the popular health plans for seniors.

“CMS saving money for taxpayers isn’t enough of a reason to face the wrath of very powerful health plans,” Fuse Brown said.

“That is extremely alarming.”

Invalid Codes

The fraud case against UnitedHealth Group, which runs the nation’s largest Medicare Advantage plan, was filed in 2011 by a former company employee. The DOJ took over the whistleblower suit in 2017.

DOJ alleges Medicare paid the insurer more than $7.2 billion from 2009 through 2016 solely based on chart reviews; the company would have received $2.1 billion less if it had deleted unsupported billing codes, the government says.

The government argues that UnitedHealth Group knew that many conditions it had billed for were not supported by medical records but chose to pocket the overpayments. For instance, the insurer billed Medicare nearly $28,000 in 2011 to treat a patient for cancer, congestive heart failure, and other serious health problems that weren’t recorded in the person’s medical record, DOJ alleged in a 2017 filing.

In all, DOJ contends that UnitedHealth Group should have deleted more than 2 million invalid codes.

Instead, company executives signed annual statements attesting that the billing data submitted to CMS was “accurate, complete, and truthful.” Those actions violated the False Claims Act, a federal law that makes it illegal to submit bogus bills to the government, DOJ alleges.

The complex case has featured years of legal jockeying, even pitting the recollections of key CMS staff members — including several who have since departed government for jobs in the industry — against those of UnitedHealthcare executives.

‘Red Herring’

Court filings describe a 45-minute video conference arranged by then-CMS administrator Marilyn Tavenner on April 29, 2014. Tavenner testified she set up the meeting between UnitedHealth and CMS staff at the request of Larry Renfro, a senior UnitedHealth Group executive, to discuss implications of the draft rule. Neither Tavenner nor Renfro attended.

Two UnitedHealth Group executives on the call said in depositions that CMS staffers told them the company had no obligation at the time to uncover erroneous codes. One of the executives, Steve Nelson, called it a “very clear answer” to the question. Nelson has since left the company.

For their part, four of the five CMS staffers on the call said in depositions that they didn’t remember what was said. Unlike the company’s team, none of the government officials took detailed notes.

“All I can tell you is I remember feeling very uncomfortable in the meeting,” Rice said in her 2022 deposition.

Yet Rice and one other CMS staffer said they did recall reminding the executives that even without the chart review rule, the company was obligated to make a good-faith effort to bill only for verified codes — or face possible penalties under the False Claims Act. And CMS officials reinforced that view in follow-up emails, according to court filings.

DOJ called the flap over the ill-fated regulation a “red herring” in a court filing and alleges that when UnitedHealth asked for the April 2014 meeting, it knew its chart reviews had been under investigation for two years. In addition, the company was “grappling with a projected $500 million budget deficit,” according to DOJ.

Data Miners

Medicare Advantage plans defend chart reviews against criticism that they do little but artificially inflate the government’s costs.

“Chart reviews are one of many tools Medicare Advantage plans use to support patients, identify chronic conditions, and prevent those conditions from becoming more serious,” said Chris Bond, a spokesperson for AHIP, a health insurance trade group.

Whistleblowers have argued that the cottage industry of analytics firms and coders that sprang up to conduct these reviews pitched their services as a huge moneymaking exercise for health plans — and little else.

“It was never legitimate,” said William Hanagami, a California attorney who represented whistleblower James Swoben in a 2009 case that alleged chart reviews improperly inflated Medicare payments. In a 2016 decision, the 9th Circuit Court of Appeals wrote that health plans must exercise “due diligence” to ensure they submit accurate data.

Since then, other insurers have settled DOJ allegations that they billed Medicare for unconfirmed diagnoses stemming from chart reviews. In July 2023, Martin’s Point Health Plan, a Portland, Maine, insurer, paid $22,485,000 to settle whistleblower allegations that it improperly billed for conditions ranging from diabetes with complications to morbid obesity. The plan denied any liability.

A December 2019 report by the Health and Human Services Inspector General found that 99% of chart reviews added new medical diagnoses at a cost to Medicare of an estimated $6.7 billion for 2017 alone.

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Hace unos años, los organizadores de uno de los mejores programas de ejercicios para personas con la enfermedad de Parkinson en Estados Unidos se dieron cuenta de que tenían un problema: la mayoría de los participantes eran blancos no hispanos.

“Siempre nos preguntamos por los que no están aquí, y por qué no están participando”, dijo David Leventhal, director del programa Dance for PD, que trabaja con el Grupo de Danza Mark Morris en la ciudad de Nueva York.

Entonces, Leventhal y su equipo pusieron manos a la obra: contrataron más instructores que hablaban español o mandarín y tradujeron los materiales publicitarios. Esto aumentó significativamente el número de participantes de comunidades hispanas (que pueden ser de cualquier raza), y chinas.

Pero los esfuerzos por captar participantes afroamericanos no han sido tan eficaces, apuntó Leventhal.

Se considera que el ejercicio es fundamental para el tratamiento del Parkinson. Numerosos estudios afirman que la actividad física es efectiva para aliviar los síntomas de la enfermedad y para mejorar la movilidad, la flexibilidad y el equilibrio.

Sin embargo, las personas que dirigen los programas de ejercicios para el Parkinson en un puñado de ciudades a lo largo del país confirman que hay grandes dificultades para sumar a sus actividades a personas de raza negra.

“En el Parkinson, el movimiento es terapéutico, es medicina. Así que no conseguir que esas comunidades se involucren en los programas de ejercicios es como negarles la medicación. “Si esto fuera una píldora, sería un escándalo”.

Cuando se presenta el mal de Parkinson, las neuronas que producen dopamina se destruyen lentamente. Un pequeño estudio realizado por investigadores de la Universidad de Yale demostró que, si los pacientes hacen seis meses de ejercicios, las neuronas productoras de dopamina crecen más sanas.

A la vez, una investigación publicada por una revista médica británica este año alentó un “cambio de paradigma” en el que la actividad física sería “recetada individualmente como medicina” a los pacientes en una etapa temprana de la enfermedad.

Por eso, personas como Eric Johnson, fundador y director general de Movement Revolution, se sienten frustradas. Johnson dijo que su iniciativa en el área de Chicago ofrecía un programa gratuito de seis meses de ejercicios para pacientes con Parkinson e intensificó su promoción en la comunidad negra, pero obtuvo poca respuesta. “Seré sincero, fue un desafío”, dijo.

Un gran obstáculo es que muchas personas negras ni siquiera saben que tienen la enfermedad. Los factores de riesgo biológicos y genéticos han sido poco estudiados en las personas de ascendencia africana. Además, investigaciones recientes han identificado un nuevo factor de riesgo de Parkinson en esta población.

Estudios muestran que las personas de raza negra tienen menos probabilidades de que les diagnostiquen Parkinson. Algunos apuntan a la parcialidad de los médicos. Por ejemplo, un artículo publicado en julio del año pasado en Nature concluyó que el prejuicio puede influir en la evaluación de pacientes con disminución de la expresividad facial, un síntoma común del Parkinson en el que los músculos faciales se endurecen, lo que dificulta sonreír, levantar las cejas y expresar sentimientos.

Cuando una persona blanca no hispana se presenta en el consultorio del médico con estos síntomas, es probable que el profesional los reconozca como signos de Parkinson, dijo Bernard Coley, defensor de los enfermos de Parkinson, en particular de aquellos de bajos ingresos.

Pero cuando una persona negra presenta los mismos síntomas, el médico podría interpretar sus comportamientos como expresión de “desconexión” o “enojo”, afirmó Coley, que integra la sección californiana de la Fundación contra el Parkinson.

Alrededor de 1 de cada 5 adultos negros asegura que, en el lapso de los últimos tres años, un proveedor de salud los ha tratado de forma injusta o irrespetuosamente debido a su raza u origen étnico, en comparación con el 3% de los adultos blancos no hispanos, reveló una encuesta de KFF del año pasado.

La encuesta también mostró que 6 de cada 10 adultos negros afirman que se preparan para recibir eventuales ofensas y que sienten que deben tener cuidado con su aspecto durante las citas médicas, algo que les pasa solo a 1 de cada 3 adultos blancos no hispanos.

Coley dijo que los prejuicios pueden llevar a retrasar el diagnóstico del Parkinson o a no hacerlo. Y luego, una vez que la dolencia ha sido diagnosticada, es posible que un paciente negro se muestre reacio a participar de un programa de ejercicios por temor a sufrir represalias en el trabajo.

“No quieres parecer enfermo o conflictivo”, dijo Coley, “porque [tu empleador] usará cualquier excusa para deshacerse de ti”.

El orgullo y la privacidad son otros factores, dijo Wendy Lewis, directora general del Parkinson Council de Philadelphia. “Las familias de color no comparten ni cuentan sus asuntos”, dijo. “No confían sus historias a nadie”.

Una forma de generar confianza y aumentar la participación en los programas de ejercicios para el Parkinson es que sean personas negras quienes lideren la capacitación y el registro, dijo Tammyjo Best, enfermera coordinadora de la Clínica de Atención Integral de la Enfermedad de Parkinson en la Universidad de Emory, en Atlanta.

Como persona negra que recluta pacientes para ensayos clínicos, Best dijo que a menudo logra superar la desconfianza: “Cuando me miran, se ven a sí mismos”, dijo.

Tras el escaso éxito de sus intentos de reclutar pacientes negros con Parkinson en su programa de ejercicios en Chicago, Johnson concluyó que el hecho de no ser de la misma raza es un “factor importante”.

Leventhal, que dirige el programa de ejercicios para Parkinson en Nueva York, ha llegado a la misma conclusión. Su organización, el Grupo de Danza Mark Morris, está recaudando fondos para proporcionar microdonaciones a grupos en comunidades desatendidas, con el objetivo de que inicien programas de baile para el Parkinson. Así esperan que “puedan tener el control y tomar las decisiones financieras ellos mismos”.