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Cameras Are Popping Up in Long Term Care Facilities

Columnist Paula Span explains this growing phenomenon: why and how it’s being done and what the pros and cons are. KFF Health News posted her reporting on April 21, 2025. Her column also ran on the New York Times. Funding from the Silver Century Foundation helps KFF Health News develop articles (like this one) on longevity and related health and social issues. 

The assisted living facility in Edina, MN, where Jean Peters and her siblings moved their mother in 2011, looked lovely. 

“But then you start uncovering things,” Peters said.

Her mother, Jackie Hourigan, widowed and developing memory problems at 82, too often was still in bed when her children came to see her midmorning.

“She wasn’t being toileted, so her pants would be soaked,” said Peters, 69, a retired nurse practitioner in Bloomington, MN. “They didn’t give her water. They didn’t get her up for meals.” Her mother dwindled to 94 pounds.

Most ominously, Peters said, “we noticed bruises on her arm that we couldn’t account for.” Complaints to administrators—in person, by phone and by email—brought “tons of excuses.”

So Peters bought an inexpensive camera at Best Buy. She and her sisters installed it atop the refrigerator in her mother’s apartment, worrying that the facility might evict her if the staff noticed it.

Monitoring from an app on their phones, the family saw Hourigan going hours without being changed. They saw and heard an aide loudly berating her and handling her roughly as she helped her dress.

They watched as another aide awakened her for breakfast and left the room even though Hourigan was unable to open the heavy apartment door and go to the dining room. “It was traumatic to learn that we were right,” Peters said.

After filing a police report and a lawsuit, and after her mother’s 2014 death, Peters in 2016 helped found Elder Voice Advocates, which lobbied for a state law permitting cameras in residents’ rooms in nursing homes and assisted living facilities. Minnesota passed it in 2019.

Though they remain a contentious subject, cameras in care facilities are gaining ground. By 2020, eight states had joined Minnesota in enacting laws allowing them, according to the National Consumer Voice for Quality Long-Term Care: Illinois, Kansas, Louisiana, Missouri, New Mexico, Oklahoma, Texas and Washington.

Laws in some states require facilities to allow cameras, but it’s not clear that facilities take those laws seriously.

The legislative pace has picked up since, with nine more states enacting laws: Connecticut, North Dakota, South Dakota, Nevada, Ohio, Rhode Island, Utah, Virginia and Wyoming. Legislation is pending in several others.

California and Maryland have adopted guidelines, not laws. The state governments in New Jersey and Wisconsin will lend cameras to families concerned about loved ones’ safety.

But bills have also gone down to defeat, most recently in Arizona. For the second year, a camera bill passed the House of Representatives overwhelmingly but, in March, failed to get a floor vote in the state Senate.

“My temperature is a little high right now,” said State Rep. Quang Nguyen, a Republican who is the bill’s primary sponsor and plans to reintroduce it. He blamed opposition from industry groups, which in Arizona included LeadingAge, which represents nonprofit aging services providers, for the bill’s failure to pass.

The American Health Care Association, whose members are mostly for-profit long term care providers, doesn’t take a national position on cameras. But its local affiliate also opposed the bill.

“These people voting no should be called out in public and told, ‘You don’t care about the elderly population,’” Nguyen said.

A few camera laws cover only nursing homes, but the majority include assisted living facilities. Most mandate that the resident (and roommates, if any) provide written consent. Some call for signs alerting staffers and visitors that their interactions may be recorded.

The laws often prohibit tampering with cameras, or retaliating against residents who use them, and include “some talk about who has access to the footage and whether it can be used in litigation,” added Lori Smetanka, JD, executive director of the National Consumer Voice for Quality Long-Term Care.

It’s unclear how seriously facilities take these laws. Several relatives interviewed for this article reported that administrators told them cameras weren’t permitted, then never mentioned the issue again. Cameras placed in the room remained.

Some families use a camera just to stay in touch. 

Why the legislative surge? During the COVID-19 pandemic, families were locked out of facilities for months, Smetanka pointed out. “People want eyes on their loved ones.”

Changes in technology probably also contributed, as Americans became more familiar and comfortable with video chatting and virtual assistants. Cameras have become nearly ubiquitous—in public spaces, in workplaces, in police cars and on officers’ uniforms, in people’s pockets.

Initially, the push for cameras reflected fears about loved ones’ safety. Kari Shaw’s family, for instance, had already been victimized by a trusted home-care nurse who stole her mother’s prescribed pain medications.

So when Shaw, who lives in San Diego, and her sisters moved their mother into assisted living in Maple Grove, MN, they immediately installed a motion-activated camera in her apartment.

Their mother, 91, has severe physical disabilities and uses a wheelchair. “Why wait for something to happen?” Shaw said.

In particular, “people with dementia are at high risk,” added Eilon Caspi, PhD, a gerontologist and researcher of elder mistreatment. “And they may not be capable of reporting incidents or recalling details.”

More recently, however, families are using cameras simply to stay in touch.

Anne Swardson, who lives in Virginia and in France, uses an Echo Show, an Alexa-enabled device by Amazon, for video visits with her mother, 96, in memory care in Fort Collins, CO. “She’s incapable of touching any buttons, but this screen just comes on,” Swardson said.

Art Siegel and his brothers were struggling to talk to their mother, who, at 101, is in assisted living in Florida; her portable phone frequently died because she forgot to charge it. “It was worrying,” said Siegel, who lives in San Francisco and had to call the facility and ask the staff to check on her.

Now, with an old-fashioned phone installed next to her favorite chair and a camera trained on the chair, they know when she’s available to talk.

Both camera opponents and their supporters have expressed concern about residents’ privacy. 

As the debate over cameras continues, a central question remains unanswered: Do they bolster the quality of care? “There’s zero research cited to back up these bills,” said Clara Berridge, PhD, a gerontologist at the University of Washington who studies technology in elder care. “Do cameras actually deter abuse and neglect? Does it cause a facility to change its policies or improve?”

Both camera opponents and supporters cite concerns about residents’ privacy and dignity in a setting where they are being helped to wash, dress and use the bathroom.

“Consider too the importance of ensuring privacy during visits related to spiritual, legal, financial or other personal issues,” Lisa Sanders, a spokesperson for LeadingAge, said in a statement.

Though cameras can be turned off, it’s probably impractical to expect residents or a stretched-thin staff to do so.

Moreover, surveillance can treat those staff members as “suspects who have to be deterred from bad behavior,” Berridge said. She has seen facilities installing cameras in all residents’ rooms: “Everyone is living under surveillance. Is that what we want for our elders and our future selves?”

Ultimately, experts said, even when cameras detect problems, they can’t substitute for improved care that would prevent them—an effort that will require engagement from families, better staffing, training and monitoring by facilities and more active federal and state oversight.

“I think of cameras as a symptom, not a solution,” Berridge said. “It’s a band-aid that can distract from the harder problem of how we provide quality long-term care.”

Dementia: A Diagnosis Too Often Delayed

Last year, a bank officer phoned Kelli Brown’s brother with a concern: a lot of money was going out of their 87-year-old father’s bank account. 

Their father, a retired accountant, lived alone in Cincinnati. He seemed to be functioning well on his own, continuing to drive and golf twice a week. But when asked about the account, their father explained he’d won $3 million in the Publisher’s Clearinghouse Sweepstakes. He was paying the taxes so he could claim his prize. 

“This scammer had befriended him, and my dad fell for it, hook line and sinker,” Brown said. “He was taking money out of his account to buy gift cards and then sent the codes to the scammer.”  

Efforts to convince him this was a scam didn’t work. He continued sending money, and the family was powerless to stop him. Ultimately, he lost $75,000—most of his life savings. 

“He kept telling us, ‘No, I’ve won this money, you guys just don’t understand how the process works,’” Brown said. 

Finally, they persuaded their father to undergo a neuropsychiatric exam, which revealed he had advanced, stage 5 Alzheimer’s disease with dementia. Neither his physician nor the family had noticed any clues. 

“He had been compensating extremely well,” Brown said. 

A Common Tragedy

The Brown family’s situation is not uncommon. Only 50 percent of all dementia cases are ever medically diagnosed.

And many diagnoses come too late—too late to protect the older adult from scams, to make plans for their future or to start treatment that could slow the progression of the disease. 

“It’s a tragedy when I see patients presenting to me who are already in the moderate to severe stages of Alzheimer’s, where we can only offer palliative or comfort care,” said David Weisman, MD, with Abington Neurological Associates in Abington, PA. “It’s a tragedy because now we have a disease-modifying therapy that can slow the disease.” 

Why aren’t more people diagnosed sooner? Signs of cognitive changes in an older adult can be easily missed or dismissed as normal aging. In some cases, the family may know the older adult has cognitive impairment but, assuming nothing can be done, they don’t pursue a diagnosis. And few primary care physicians (PCPs) perform dementia screening on a routine basis.

Health care leaders are taking note. Programs like Dementia Care Aware in California are working to encourage and train providers to perform screening earlier and more proactively for older patients.

“Dementia is incredibly common, affecting as many as 30 to 50 percent of people over age 85, and there are a number of programs, like ours, where the goal is to identify people with dementia much earlier,” said Anna Chodos, MD, a geriatrician and principal investigator of Dementia Care Aware, which aims to improve detection in older adults with Medi-Cal benefits. 

Sooner, Not Later

Experts say sooner is always better for a dementia screening. 

For one thing, a screening as part of an overall checkup could rule out dementia and avoid needless suffering and worry, according to Ambar Kulshreshtha, MD, associate professor, Department of Family and Preventive Medicine, Emory University School of Medicine. 

“Sometimes what looks like dementia might be a treatable condition, like a urinary tract infection, thyroid disease, depression or the result of medication interactions,” he said. “These can mimic cognitive impairment.” 

Some medications, like sleep meds, sedatives and anticholinergic drugs (used for a variety of conditions from overactive bladder to chronic obstructive pulmonary disease), can temporarily impair cognition. 

“It’s important to report concerns about cognitive loss so that your doctor can rule out other causes that might be easily treated,” Kulshreshtha said. 

A later diagnosis may mean it’s too late for a patient to benefit from newer medications that can slow the progression of disease, such as Leqembi (lecanemab-irmb), a drug approved by the FDA in January 2023 for the treatment of Alzheimer’s. (Leqembi is not prescribed for other types of dementia, such as vascular, frontotemporal or Lewy body.) 

“This is the holy grail that we’ve been hoping for and waiting for forever: a disease-modifying treatment,” said Andrew Ferree, MD, a neurologist in Milford, MA, and an Alzheimer’s researcher. “If the patient has Alzheimer’s, you want to catch that as absolutely early as possible.” 

When dementia goes unrecognized, family stress and resentment can build up for years. 

Ferree cited a common saying in stroke neurology: “Time is brain.” For a patient having a stroke, the sooner they’re treated, the more brain function is likely to be preserved. 

“The same can be said for Alzheimer’s now,” he said. “The sooner you get that diagnosis and see if you qualify for that treatment, the more likely it could change everything.” For those with other types of dementia, clinical trials of experimental medications can offer hope, but only if the patient is diagnosed. 

A delayed diagnosis may also carry a psychological cost, according to Weisman. By the time dementia is diagnosed, he said, resentment and stress may have already been building among family members for years. 

Diane Ty, MBA, managing director of the Milken Institute Future of Aging, saw that in her own family. 

After retiring from a distinguished career as an engineer, Ty’s father became increasingly difficult. He was verbally abusive toward her mother. The family assumed he just wasn’t adjusting well to the loss of identity that came with early retirement. Finally, after an unexplained parking lot accident, her father was assessed and diagnosed with dementia. 

That was over 17 years ago, but the memory is still raw for Ty. Her voice broke as she recalled the family’s ordeal.

“Before the diagnosis, my mom endured so much distress over my dad’s behavior and verbal abuse,” said Ty. “When she learned of his diagnosis, she was able to forgive him. She became his caregiver and gave it her all. We finally understood that it wasn’t him. It was this terrible disease.”

Making Plans

An early diagnosis also gives families a chance to put safeguards in place to help protect the older adult’s assets from scammers. 

“There’s an entire scam industry in this country, and it’s targeting vulnerable older people, usually those with some cognitive changes,” Chodos said. 

Even without instances of fraud, an older adult’s finances may suffer from poor decisions caused by undiagnosed dementia. Ty noted that her family missed one clue that seems obvious in retrospect: her father started to spend money on luxuries like a new car or a garage repair, a departure from his normally frugal, practical ways. 

In fact, financial problems, like missing routine payments or a lowered credit score, may represent an early predictor of dementia, according to a 2020 study published in JAMA Internal Medicine. The study found that Medicare beneficiaries who went on to be diagnosed with dementia were more likely to have missed payments on bills as early as six years before clinical diagnosis.

Undiagnosed dementia can be especially problematic for “solo agers” without spouses or adult children, or for those who are socially isolated.

“An older adult with undiagnosed dementia may start having difficulty managing their health care,” said Kristen Romea, LCSW, director of supportive services for Alzheimer’s San Diego. “These days it’s very difficult to do without accessing an online portal. They just stop going to the doctor, so that means they’re no longer getting treatment for the other conditions they’re living with. And they become even more isolated.”

Romea added that many older adults put off having their cognition assessed because of stigma or shame, or for fear of losing their driver’s license. In California, for example, health care providers are mandated to report a dementia diagnosis to the DMV.

How Dementia is Diagnosed

When patients express concerns about cognitive issues to a PCP, typically the first step is a cognitive screening test, such as the Montreal Cognitive Assessment (MoCA) or Mini-Cog. Patients are asked to complete tasks on an app or paper-based test that assesses short-term memory, executive function, visuospatial abilities and orientation to time and place. 

If the screening test points to cognitive issues, the physician will refer the patient to a neurologist, psychiatrist or geriatrician for further evaluation. The next step might involve more in-depth cognitive testing, an extensive medical and family history and imaging tests such as a PET scan or MRI.

However, unless a patient reports concerns, most PCPs don’t perform screenings on a routine basis. 

“It’s really hard to do dementia detection and diagnosis in primary care,” said Chodos. “Doctors don’t get a lot of education on dementia during their training. Dementia is a more labor-intensive, complex diagnosis to make.” 

Dementia can’t be diagnosed definitively with a single blood test or scan. Cognitive assessments such as MoCA aren’t “pass” or “fail” tests; they must be considered in the context of the person’s history. An exceptionally well-educated person, for example, may earn a relatively high score, even if their cognitive abilities have declined significantly due to dementia. 

PCPs are not strongly encouraged to perform routine screening. The most recent statement of the US Preventive Services Task Force, which provides preventive care guidelines to physicians, concluded that the evidence was insufficient to recommend routine screening.  

Changes Ahead

Weisman thinks physicians will be more inclined to perform routine screening as they become more aware of new treatments. As recently as the mid-twentieth century, he said, doctors were reluctant to inform patients of a cancer diagnosis, a virtual death sentence with few treatment options. As the stigma attached to dementia recedes, and treatments improve, Weisman thinks doctors will be more proactive. 

“I think there was a time when doctors thought, ‘Why bother the patient if we can’t do anything about dementia?’” he said. “Now we have something we can do about it.”

Ty notes progress on other fronts that could help change the picture. Researchers are developing new tools that will make diagnosis more accessible and precise, such as a simple blood test to detect biomarkers of disease pathology. Similarly, digital cognitive assessment tools are allowing doctors to move away from paper-based tools, which require someone to be present to administer, observe and interpret the results. Early use suggests these digital tools offer more accuracy in terms of prediction, automated scoring and interpretation. 

Proactive Approach 

In the meantime, patients and families must approach this issue proactively. 

The first step is to become aware of the signs of dementia—and how they differ from normal aging. Nearly everyone over 65 will experience some measure of forgetfulness and mild cognitive decline. It’s normal for an older person to misplace the car keys from time to time. For a person with dementia, however, memory loss begins to disrupt daily life. The person may put the keys in the refrigerator or accuse others of stealing them. 

People with a family history of dementia should consider asking for baseline screening even before they experience symptoms.

“I would be screening before they even start forgetting their keys, before they have any memory problems,” Ferree said. 

Ty is hopeful that, one day, brain health screenings will become as routine as blood pressure checks for adults 65 and older. Until then, patients and their families need to report any symptoms of cognitive change and request evaluation.

“Individuals who are concerned about their memory, or a loved one’s memory, should make an appointment with their health care provider for a thorough cognitive evaluation,” according to the Alzheimer’s Association. 

A Cautionary Tale

Today, Kelli Brown’s father resides in assisted living. Family members continue to pay off his debts. 

Brown is hopeful the scammers will be caught. While dementia robbed her father of his ability to recognize the scam, his accounting habits remained intact. He kept detailed records of all the transactions with the scammer—receipts from every FedEx package received and every gift card he’d purchased. She hopes those records will enable law enforcement to bring the scammer to justice. 

Meanwhile, Brown is sharing her story on Facebook as a cautionary tale, urging friends to pursue dementia screening and assessment for family members who may be affected. 

“With early detection, we could have prevented Dad from giving away his retirement savings,” she said.  

What AI Can Do for Older Adults

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

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

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

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

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

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

Wide Range of Benefits

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

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

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

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

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

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

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

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

Robots as Companions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Potential Downsides

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

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

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

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

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

Living Independently 

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

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

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

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

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

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

Alyssa Weakley, PhD

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

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

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

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

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

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

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

 

Innovators Find Creative Ways to Connect the Generations

As the pandemic receded, Lenox Hill Neighborhood House, a community center in New York City’s Upper East Side, came back to life. The halls buzzed with people of all ages, from young children in the preschool to older adults who came for activities and communal meals. 

But few were connecting beyond their age-segregated groups. 

“We’ve always had kids and older adults in the same building, but there were a lot of things that were preventing them from coming together, including safety concerns on both sides,” said Jessica Leylavergne, director of visual and performing arts at Lenox Hill.  

To help change that, Leylavergne piloted an intergenerational theater program for children, ages 7 to 11, and a small group of older adults. The weekly meetings started with icebreakers, such as fun debates over questions like “Outer space vs. ocean?” and “Sleeping or reading?” 

“The kids were a little nervous at first,” she said. “They didn’t know how to act around the older people.” 

Next, group members collaborated to create scripts for two modern versions of classic tales: “The Influencer’s New Clothes” (a variation of “The Emperor’s New Clothes,” featuring a social media star, an idea contributed by a young participant) and “The Gingerbread Kid Takes Manhattan” (a takeoff on “The Gingerbread Man,” with the Kid blowing up Twitter, a twist proposed by an older participant).

Soon, the age barriers began to fall away. The group became a working theater troupe. 

In “The Influencer’s New Clothes,” Ric Suarez, 76, played the Assistant Baker, with the role of the Baker played by a young person. He laughs when recounting how his younger counterpart “told off” his character for doing things wrong. 

“At first, the kids treated us like their parents or grandparents,” he said. “They were cautious because we were the adults. But soon they learned they didn’t need to treat us with reverence. They just accepted us for who we are.” 

The pandemic revealed the harmful effects of loneliness, isolation and disconnection, which tend to affect younger and older people most acutely.

Giulia Manfe, 9, played the Designer in the same play. 

“Working with the older people was fun,” she said. “We have good relationships with the older adults.” 

Lenox Hill’s theater is one example of a wave of new initiatives cropping up across the United States. In recent years, community leaders, social innovators and even business entrepreneurs have begun devising creative ways to forge intergenerational connections.

“I think the pandemic was a turning point,” said Donna Butts, executive director of Generations United, Inc., a nonprofit focused on intergenerational collaboration. “People are realizing how critically important it is to have opportunities for young and old people to connect.”

The pandemic shined a light on the harmful effects of loneliness, isolation and disconnection, which tend to affect younger and older people most acutely. The problem has become so widespread that the US Surgeon General issued an advisory in April. The pandemic also led to learning loss among school children, a rise in mental health issues, especially among teens and young adults, and a worrisome increase in divisiveness and polarization. 

In addition, the pandemic highlighted the vulnerability of many older adults, Butts said. 

“Intergenerational solutions can really help to combat all that,” she said. “They help build bridges, not just between ages but also between a growing older population that’s white and a growing population of younger people of color. Intergenerational programs help connect those two very different-looking groups so that they care about each other.”

Tech innovators are building digital platforms that connect older adults virtually with children, teens and young adults. Activists are finding ways to attract multigenerational volunteers and leverage their complementary strengths. Entrepreneurs are devising for-profit businesses to match people of different generations for mentoring.  

“I think we’re at an inflection point in our society right now that’s making [intergenerational efforts] rise in urgency and importance,” said Eunice Lin Nichols, co-CEO of CoGenerate, a nonprofit working to bridge generational divides. “There’s a lot of frenetic energy, in a good way, around finding new ways to bring older and younger people together to be part of the solution to problems we’re facing.”

Tech-Driven Innovation

A fateful cab ride 12 years ago was the first spark of Eldera.ai, a digital platform that brings together older adult mentors with children and teens for weekly, virtual conversations. After a dinner party, Dana Griffin agreed to share a taxi with an older woman named Linda Storch. The two women quickly became best friends, even though Storch was more than 30 years Griffin’s senior. Not only did they just enjoy spending time together, Storch, a chief financial officer at a high-fashion shoe company, encouraged Griffin in her career in advertising and coached her on relationships.

“We had so much fun together,” said Griffin. “She had my back when nobody else had my back.”

Griffin was devastated when Storch passed away in 2017 at age 64. Hoping to help others make friendships across generations, she founded Eldera.ai. The platform uses artificial intelligence (AI) to match older adult mentors with young mentees and to monitor the conversations to ensure children and older adults stay safe. 

“Older adults experience increased purpose, community and health span,” Griffin said. “Kids gain resilience and social/emotional skills. You can’t learn those from TikTok. You can really only learn them from another person.” 

Parents of young mentees have reported they’ve seen a difference in their children at the dinner table. “They tell me their kids are more open, more curious, more interested in human connection with their own families,” Griffin said. 

The mentors benefit just as much. Patty Early, a retired teacher, mentors Margot, a 16-year-old girl with Down’s syndrome, through Eldera. 

“Margot helped me to reconnect with kids and brought me out of isolation,” Early said in a blog post. “She makes me feel loved. She makes me laugh. She accepts me exactly as I am. That’s what friends are for.” 

Connecting Generations to Create Change

Traditionally, intergenerational programs have brought together people of different ages as a way of providing a service, such as the Foster Grandparent Program, which deploys older adult volunteers in daycare centers and tutoring programs, or elder visitation programs like Dorot, which enlist volunteers—typically middle-aged or younger—to visit or call older adults who may be isolated. 

Now, some are taking a new tack—connecting older and younger people to tackle issues of common concern, such as climate change or racial injustice. 

For example, longtime climate activist Bill McKibben started Third Act, which he leads co-generationally with a younger person, Vanessa Arcara. The group mobilizes people 60 and older, as allies to young people, to work together to protect the climate and safeguard democracy. When he’s called on to write op-eds for media outlets, McKibben often collaborates and shares a byline with a high school or college-aged person, to highlight the shared effort. 

Business Models

While nonprofits have traditionally operated intergenerational programs, some entrepreneurs are testing for-profit business models. 

Griffin chose to start Eldera as a business rather than a non-profit because she believes that will enable the company to offer the platform at a large scale more sustainably than a donation-supported program. To generate income, she is negotiating with Medicare and hospital networks for contracts allowing clinicians to prescribe Eldera to patients who feel isolated or who need a sense of a purpose. 

Another for-profit digital start-up, called Hey Auntie!, connects Black women virtually across ages and life stages for networking, coaching and encouragement. It’s still in early stages, but founder Nicole Kenney ultimately hopes to attract large corporations to pay for Hey Auntie! as a perk for employees, as part of their Employee Assistance Programs (EAPs). 

“Aunties” are typically older women, not necessarily blood relations, who mentor younger people. Kenney said the term is a tradition in Black communities in the United States that can be traced back to West Africa. She was inspired to start Hey Auntie! when one of her own aunties guided her through stress-related health issues.

Hey Auntie! is an example of another type of innovation: multigenerational programs that operate within a specific community with an eye toward preserving and strengthening the community’s cultural traditions. 

“I come from a broad network of aunties who have not had biological ties but who supported and mentored me,” she said. For the platform, an “Auntie” can be any Black woman with experience who would like to mentor others; those who join the platform in hopes of receiving mentorship are dubbed “Auntees.” 

Three tribal nations have created joint projects for young and old that involve activities like storytelling or gardening. 

On a similar front, the Northland Foundation’s Age to Age program has provided small grants to three tribal nations in rural northeastern Minnesota: the Bois Forte Band of Chippewa, the Fond du Lac Band of Lake Superior Chippewa and the Grand Portage Band of Lake Superior Chippewa. 

Projects vary by community. Many include storytelling or community gardening. At Fond du Lac, older adults shared traditional practices with younger participants, such as ricing (harvesting wild rice) and sugarbushing (tapping trees for maple syrup).  

“It’s about sharing those cultural traditions while bringing people of different generations together,” said Zane Bail, chief operating officer of Northland Foundation. “This has given the older adults a renewed sense of purpose. They’re less isolated, they feel better emotionally and they’re excited to contribute to helping youth thrive.” 

Back for More

At Lenox Hill, after 10 weeks of writing and rehearsing, the Intergenerational Theater Project culminated with a performance of the group’s two plays.  

“There has been a great exchange of ideas and many friendships have developed across the generations,” Leylavergne told the audience. “And we all had a lot of fun.”

Giulia Manfe, the 9-year-old actor, enjoyed the project so much that she came back in June for Lenox Hill’s production of “The Music Man Sr.,” a version of the classic musical licensed for older adult community groups. She pitched in with props and performed in the marching band for the show’s finale. Suarez, who played the Mayor, was thrilled to share the stage with Manfe and a few other young acquaintances he’d made at the earlier program. 

Suarez sees benefits for both age groups. Working together made the older participants feel young and, he believes, made younger participants feel more mature. 

“I hope people in other areas of the country will do the same thing,” he said. “It’s a great way for kids and older adults to learn about each other.” 

Friendships Are Good for Your Health

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

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

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

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

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

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

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

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

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

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

Tips for Making Friends 

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

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

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

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

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

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

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

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

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

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

Challenging at Any Age

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

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

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

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

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

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

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

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

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

Fishing for Friends

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

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

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

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

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

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

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

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

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

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

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

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

Online Lifelines

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

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

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

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

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

Older People’s Mental Health Undermined by the Pandemic

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

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

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

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

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

Isolation and Loneliness

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

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

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

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

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

An Outpouring of Sadness and Worry

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Overcoming Hesitations 

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

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

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

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

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

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

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

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

—Lakshmi Rangaswamy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Crafting: A Way to Cope during the Pandemic

When KathLynne Lauterback, 64, retired in January 2020, she and her husband planned to move to a new place and to travel. But just a few months later, the COVID-19 pandemic struck. A health crisis sent her husband to the hospital, and she couldn’t visit him except by phone or video chat. Lauterback lapsed into a doom loop of fretting and worry.

“I had switched from a very demanding job to doing nothing,” she said. “Everything we had fantasized about doing in retirement was on hold.” 

For relief, Lauterback turned to another item on her retirement bucket list: learning to draw and paint. She signed up for a course taught over Zoom by a Dallas, TX, artist.

“I discovered that I love working with colored pencils,” she said. “It helps me deal with the emotional changes in my life. It relaxes me and it fills the time.”

Finding Joy in Creativity

Like Lauterback, many older adults have found a lifeline in arts and crafts during the pandemic. Knitting, woodworking, painting, sculpting, baking, quilting and other crafts saw a resurgence as people spent more time at home, starting in March 2020. Retailers of craft materials saw spikes in sales. Some supplies, like yeast, even became hard to find. 

Creative activities served as a buffer that helped many older adults cope with isolation, stress and fear during the pandemic, according to James C. Kaufman of the Neag School of Education at the University of Connecticut, Storrs. He points to research that suggests that participation in arts—crafts as well as dance, singing or painting—helps increase social engagement, stave off depression and keep older adults mentally engaged and active.

“Being immersed in something creative, often losing track of time and one’s surroundings, can be intensely joyful,” he said. 

“Healing” is a word that many people echoed in describing their crafting, in whatever medium. The repetition in crafting can be calming and meditative. Choosing and working with materials of different colors and textures is stimulating and enjoyable. Acquiring or improving skills engages the brain and reinforces a sense of mastery. The act of creating connects older adults with fellow crafters and even with memories—such as recalling the grandmother who taught them how to knit. The pleasure of a finished product can boost a person’s mood. 

During the pandemic, quilters and sewers around the world sat up and said, ‘I can help!’

—Kris Stevenson 

Crafts have also given some older adults a sense of purpose during the pandemic. Kris Stevenson, 56, works part time at Fabric Fanatics, a retail fabric shop in Plano, TX. When it closed for normal business due to a lockdown, the shop sold mask-making kits via curbside pickup. Stevenson was gratified as the community, including many older adults, banded together to sew more than 3,000 masks, all donated to retirement homes, hospitals and neighbors. Stevenson also teamed up with fellow parents who sewed bell covers for musical instruments for the local high school band, to reduce the risk of spreading the virus through the wind instruments. 

“During the pandemic, quilters and sewers around the world sat up and said, ‘I can help! This is actually something I can do!’” Stevenson said. An older friend, in her early 80s, told her, “It just feels so good to have something that I can do to contribute, to help.” 

Crafting also leads older people to tap into their creativity, according to Mark Runco, director of creativity research and programming at Southern Oregon University.  He’s embarking on a study of people who started crafting during the pandemic, with hopes that the research will help highlight what he calls “everyday creativity.” 

Runco thinks creativity is an overlooked coping strategy that helps many people, including those who don’t consider themselves to be creative, and even contributes to happiness and overall mental health. 

“Creativity researchers tend to focus on socially recognized creativity, such as the work of artists and performers,” Runco said. “But any activity that is original and effective is a form of creativity.”

Connection during Isolation

Many older adults found that crafting helped connect them with others while they were stuck at home. After Julie Hatch Fairley opened JuJu Knits in Fort Worth, TX, in 2019, the shop quickly turned into a hangout for crafters; many would stop in to knit, crochet, ask questions and socialize. After the shop closed in March 2020, customers continued to gather virtually to share their current projects. 

Similarly, when Candace Leshin’s bridge group stopped meeting due to the pandemic, she found a new group to connect with virtually. 

“I had always thought, ‘One of these days I’m going to learn how to quilt,’” said Leshin, 72, a retired skin pathologist. “’One of those days’ came when I was sitting at home with nothing else going on.” She signed up for a quilting class (offered in-person, in a large space that allowed for social distancing, with masks required) and fell in love. As a bonus, it connected her with a community of women. 

“It’s like the old-fashioned quilting bee,” she said. “We gather to talk and work at the same time.”

Once she learned the basics of quilting, Leshin came up with an idea. She’d spent decades looking at skin cells under a microscope, teaching students how to recognize the unique pattern of each type. She’d make a “skin quilt,” with each block representing the patterns unique to a skin type or abnormality. 

“Look at a fabric with a colorful abstract design,” she said. “Other people see some blobs or dots or lines; I see a pattern.” Lines remind her of a stratum corneum (outer layer of the skin); a dotted fabric looks like lymphocytes (white blood cells). Using purchased fabrics, embroidery and appliques, she crafted squares representing patterns of abnormal skin cells, like basal and squamous cell carcinomas and melanomas—each a pleasing, colorful, abstract design. She plans to enter the finished quilt in a local competition this fall.

Besides tactile pleasures, crafters get that sense of achievement that comes with completing a project.  

“I love coming up with ideas, picking a pattern and piecing it together,” she said. “It’s hard to explain, but quilting is exciting. It opened a whole universe to me.”

Crafting can also offer simple joys: the tactile pleasures of handling colorful yarns or fabrics; the sense of achievement that comes with completing a project. For many, it can also be a way of creating a legacy, Kaufman said. His late grandmother took up painting in later life. Two of her paintings hang in his living room. 

“It’s a tiny bit of immortality, and there’s something to be said for that,” he said.  

For Mari Madison, 66, quilting brought back a connection to her past. She spent time in quarantine repairing an old quilt made by her great-grandmother around 1936. As a child, she had helped her grandmother repair the quilt, which was tied to some unhappy memories for the older woman. 

“By helping my grandmother process a very painful time from her past, I learned a lesson in self-care,” she said. She heeded that lesson in 2020, picking up the quilt and repairing it again as she processed the stress of the pandemic and the turbulent political scene in the United States.  

For Robert San Juan, 54, a Dallas, TX, software quality engineer by day and an actor by night, crafting helped fill a creative deficit. The pandemic closed the local theaters where he normally performs. He’s single and couldn’t safely visit his mother or his siblings. That left him with time on his hands. He decided to try his hand at drawing and painting, something he hadn’t done since college. 

“I’m a little bit of a perfectionist,” he said. “But this was just something to do and a way to express myself. The physicality of putting a pencil or paintbrush to paper made me feel better.” He started posting photos of his drawings and paintings on Facebook and Instagram and got many positive responses. 

“I’ve accomplished something that’s touched people,” he said. “Just doing this made me happy. The act of creation, regardless of what it is, is a human need that most people need to fill.”

Collaboration and Community

Crafting can become an outlet for shared mourning, like Stitching the Situation, a collaborative memorial of the COVID-19 pandemic. The massive cross stitch project involves crafters from every state, many of them older adults. Each volunteer receives a kit and stitches a fabric panel that represents a single day of the pandemic; each panel’s border features red stitches representing those who died and blue stitches representing the case count. The volunteer then creates a design for the center, such as a portrait of a loved one who died; a reminder to mask up; or an image of the COVID virus. Participants share photos on Instagram and gather in Zoom meetings.

“It’s creating a space to contemplate and think about what’s happened,” said organizer Heather Schulte. “It’s a meaningful way for those who lost loved ones to process grief, especially given that families can’t gather for a funeral.”

Schulte is collecting the individual panels and wants to eventually launch an exhibit. She hopes the project might play a role in the COVID-19 pandemic similar to that of the AIDS Memorial Quilt during the HIV epidemic: a traveling exhibit that could offer a space for meditation and collective healing. 

One participant, Nancy Bonig, 72, an artist in Monument, CO, chose to make the square representing October 29, 2020, the day that a relative of hers passed away from COVID-19. More than 88,000 new cases were reported, and 971 Americans died that day. Bonig’s design for the center is a flock of blue butterflies.

“As I stitch my panel, most of the time I have tears in my eyes,” she said. “I realized how fortunate I am and how difficult this has been for so many.” 

This was just one in a series of new crafting projects that Bonig took on during the pandemic. After closing her fused glass art studio, she tried quilting, making hand-painted shoes, and crocheting hats, gloves and scarves for the homeless. 

“I have to create something every day,” she said. “It’s an outlet for me, like eating or breathing.” 

And for many older adults, crafting was the outlet that helped them weather the pandemic—giving them a sense of purpose, accomplishment and connection with other crafters and providing a distraction from the stress. 

“We’ve been in chaos most of the past year,” said Lauterback. “I’m a worrier; I had a much more difficult time without something to focus on. Drawing gives me a little harbor.” 

The Doctor Is In (Virtually)

As a retired registered nurse, Donna Bening, 81, has known for decades that telemedicine was coming. Her expectations have been realized this year.

Bening had two virtual visits via videoconference: first with her primary care physician for a routine checkup, and later with her rheumatologist for a follow-up to track the progress of her rheumatoid arthritis. Bening loved the convenience. Her primary care physician, Bening noticed, checked on her from home, casually dressed, sans the usual white coat.

“Neither of us had to get dressed for the appointment,” Bening said.

Millions of older Americans tried telemedicine for the first time in 2020. Due to the pandemic, medical providers quickly pivoted to virtual visits to minimize potential exposure to COVID-19 for vulnerable older patients, and Medicare expanded its coverage to reimburse for telemedicine visits, which were previously not covered.

“The pandemic took something that was ready to launch in some form and accelerated the adoption of the new technology,” said Joshua Septimus, MD, a primary and internal medicine physician at Houston Methodist Hospital who sees many older adult patients. “I think it will have a lasting impact.”

Many experts believe telemedicine will continue to play a bigger role in medical care for older adults after the pandemic, especially if Medicare maintains its coverage. But while telemedicine offers many advantages to older adults, some worry an overzealous push for widespread adoption could leave some patients behind or push them toward virtual visits even when they really need to be seen in person.

“I worry that people are being blinded by the efficiencies [telemedicine] creates to the limitations,” Septimus said.

Advantages of Virtual Visits

Telemedicine is the use of communications technology to deliver health care to patients at a distance. Virtual visits typically involve video and audio communication, via a laptop or desktop computer, tablet (such as an iPad) or smartphone, but may also include medical visits conducted by telephone. Some expand the definition of telemedicine to include written communication between patients and doctors via email or an online portal.

Early studies indicate that patients are responding positively to virtual interactions.
For many older adults, the biggest and most obvious benefit of telemedicine is the ability to consult a doctor or other medical professional without leaving home.

“Traveling to a clinic or doctor’s office can be an exhausting task for older adults,” said Jessica Voit, MD, an assistant professor in the Department of Internal Medicine at UT Southwestern Medical Center in Dallas who specializes in geriatrics. “Some patients need a family member to take off work to bring them in.”

Eulaine Hall, 87, of Dallas likes that advantage. When her annual checkup took place over the telephone a few months ago, she didn’t need to arrange transportation to the doctor’s office via the city’s transit service for seniors. Hall, who has macular degeneration, can no longer drive.

“Avoiding the trip was major,” she said. “And I felt like the doctor spent more time with me and asked really detailed questions.”

Other advantages: doctors can conduct visits from wherever they are, saving time and money. With the patient’s permission, a third party—another medical specialist or a family member—can easily be pulled into a virtual visit.

“You could have multiple physicians in a consultation with the patient at once, instead of having the patient make multiple visits to multiple doctors,” said L. Arick Forrest, MD, vice dean of clinical affairs at the Ohio State University College of Medicine. “Telemedicine offers the possibility of a more patient-centric approach.”

Telemedicine makes it easier for patients and doctors to have frequent, brief check-ins.

Another advantage: doctors can glean a better sense of a patient’s living situation through a video visit.

“I enjoy seeing patients in their homes,” said Voit. “I get insight into their daily lives. I meet their pets. I might notice things like how it’s a challenge for a patient to stand up from a soft couch, or a throw rug on the floor that might cause a fall.”

Before the pandemic, all visits were conducted in person at Voit’s clinic. Once the pandemic hit, the clinic quickly moved most appointments to videoconference or telephone. Now, it’s a hybrid—the clinic provides some appointments in person when needed and others via telemedicine. Nurses triage appointment scheduling to determine which visits need to take place in person and which can easily and safely be conducted virtually.

“Telemedicine works well for a follow-up visit—for example, if we’re trying a new medication and need to see how the patient is doing with it,” Voit said. “But if I need to listen to the patient’s heart and lungs, or it’s a complex case, I need to see the patient in person.”

Another advantage for older adults: telemedicine makes it easier for patients and doctors to have frequent, brief check-ins.

“As you get older, you get more chronic conditions, and managing those via telemedicine, rather than deferring follow-up until your next doctor visit, is a big advantage,” said Forrest. “With telemedicine, there are more ways to be in constant connection.”

Forrest added that patients can often monitor their vital signs from home, thanks to new, consumer-oriented gadgets, such heart rate monitors, blood pressure cuffs, blood glucose monitoring, or digital pulse oximeters to measure blood oxygen levels. However, insurance coverage for these devices varies.

Technological Challenges

When Rosie Kroft, 80, called to schedule a doctor’s appointment last May, the scheduler told her she’d need to see the doctor via videoconference. Kroft’s cell phone doesn’t have video capabilities, so she enlisted her son to come to her house with his smartphone for the appointment.

“I was pleasantly surprised by how well the visit went, but it would’ve been easier for me to just go to the clinic,” she said.

While many older adults are tech savvy—and many more have become adept with FaceTime, Zoom or other video platforms during the pandemic, to stay in touch with family—some lack the skills or the devices needed to connect with telemedicine. Forrest notes that about 40 percent of patients over 65 in his clinic chose to conduct their virtual visits via telephone, rather than video—about twice as many compared to those patients under 30.

While it was a necessity during the pandemic, “When it’s done by phone, it’s just not as effective,” he said.

In-person visits will always be important. Doctors often pick up subtle physical or behavioral cues that might not come across via telemedicine.

Technology is a barrier for telemedicine for a significant number of older adults in the United States, according to a University of California, San Francisco study.

“Video visits require patients to have the knowledge to get online, operate and troubleshoot audiovisual equipment, and communicate with the cues available in person,” the study reported. “Many older adults may be unable to do this because of disabilities or inexperience with technology. An equitable health system should recognize that for some … in-person visits are already difficult, and telemedicine may be impossible.”

The study estimated that, in 2018, 13 million older adults in the United States were not ready for video visits, mostly due to lack of experience with technology or not owning the right devices.

“Telecommunication devices should be covered as a medical necessity, especially given the correlation between poverty and telemedicine unreadiness,” the study recommended.

The study also noted that older patients are more likely than younger patients to have hearing or vision loss or dementia, which can make telemedicine virtually impossible, unless someone is available to assist with the technology.

Permanent Change or Emergency Stopgap?

Many medical visits that initially took place via telephone or videoconference during the pandemic are now returning to in-person appointments, as clinics put safety protocols in place. That’s how it should be, doctors say.

“One concern of mine is that a lot of virtual care is being done [during the pandemic] for respiratory infections, where the patients really should be examined,” said Septimus. “The value of examining someone’s lymph nodes, throat or chest, that’s something you can’t replicate with technology.”

Going forward, the challenge will be striking the right balance—using telemedicine where appropriate, but making sure patients are seen in person when necessary. And determining whether telemedicine will work for a specific visit isn’t always an easy call. It depends on the situation and may vary from one patient to another. For example, a dermatologist might be able to effectively follow up via video with an established patient with a confirmed diagnosis—such as acne or an eczema flare-up—but a suspicious mole or other skin lesion must be examined in person.

“It’s really up to the practitioner to decide who needs an in-person visit,” said Carmel Dyer, MD, geriatrician with UT Physicians/McGovern Medical School at UTHealth in Houston. “We don’t want a patient who needs to be seen forced into telemedicine. On the other hand, we don’t want to drag them down here to the clinic if it’s not necessary.”

Some experts worry that, given the lower cost of telemedicine visits, insurers may eventually push patients to use this route more and more often, even when they really need to be seen by a physician. Physical examinations and personal interactions will always be important for good medical care. Physicians often pick up on subtle physical or behavioral cues that might not come across via video.

“Telemedicine is not a substitute for an in-person visit,” said Forrest. “It’s a complement.”

Geriatrician Carmel Dyer, MD, suggests that patients ask a family member or friend to join them for virtual visits, to be a second set of ears.

Septimus recalled a patient who seemed nervous and fidgety during an exam; when confronted, the patient confessed that he had a drug addiction.

“I never would have noticed that, had I not been with him in person,” he said.

To help make a virtual visit more thorough and successful, Dyer advises patients to prepare just as carefully as they would for an in-person appointment.

Helpful preparation may include:

  • Sitting in a quiet, well-lit location, with the TV off and as few distractions as possible
  • Checking vital signs (blood pressure, temperature, oxygen levels, heart rate and weight) before the visit begins
  • Writing out a list of questions for the doctor
  • Having an up-to-date list of medications
  • Wearing hearing aids or glasses, when applicable

Dyer also suggests that a patient could ask a family member or friend to join the visit to be a second set of ears, or to hold the video device if a doctor needs to see the patient’s gait or a hard-to-reach spot on the body.

Before ending the visit, Dyer advises patients to repeat the doctor’s instructions aloud, to confirm they’re understanding them correctly, and to make sure they are clear on what next steps to follow.

Even in these uncertain times, Dyer recommends that patients see a physician in person at least once a year, and more often if they have a condition that requires it. She also thinks first visits should take place in person.

“Establishing a rapport with a new patient is a bit more challenging via FaceTime,” she said. “In person, you can look the patient in the eye.”

Patient Advocates: Pathfinders in the Complex World of Medicine

When a life-threatening staph infection sent Dominick Buttiglieri, 64, to the hospital, his situation quickly worsened—and his wife, Deborah, soon felt overwhelmed. 

“His organs were shutting down, and the doctors weren’t giving us much hope,” she said. Dominick was in pain and barely conscious; Deborah was beside herself with worry. 

The Buttiglieris’ son lives in another city and couldn’t be there to help. Instead, he searched online and hired AnnMarie McIlwain, a patient advocate, who turned up at the hospital to assist. Immediately, the family felt more control over the situation. 

“AnnMarie spoke to the doctors, gave me better insight into what was going on and made suggestions without telling us what to do,” Deborah Buttiglieri said. “I’m not an in-your-face person. I didn’t know what questions to ask to get the information I wanted.” 

As Dominick started to recover, McIlwain helped the family arrange for his transfer to a good rehab facility. Now, he’s home and on the mend. 

We have the most confusing health care system in the world. If you’re feeling overwhelmed, it’s not you.

—Caitlin Donovan

More and more patients and their families are following the same path as the Buttiglieris: enlisting the help of a patient advocate to navigate the complexities of the medical system. 

“A patient advocate’s role is to make sure the medical team has the right information, to make certain the client is getting the proper attention, and translating for the family what is going on,” McIlwain said. “The hospital environment is stressful; patients are usually in pain, sedated and weak, and their loved ones are understandably emotional. It’s too much to advocate for themselves.”

Patient advocates support people undergoing medical treatment, with a focus on getting the best possible care while keeping costs as manageable as possible. Patient advocates may also use other names—health advocates, patient or health navigators, case or care managers or doulas. They work one-on-one with patients as independent consultants, paid by the patients or their families. Some advocates come with a medical or social work background; others learn on the job. Many join the field after assisting a family member. 

“Patients should only have to concentrate on getting better,” said Caitlin Donovan of the Patient Advocate Foundation, a nonprofit that provides advocacy and patient education. “We have the most confusing health care system in the world. If you’re feeling overwhelmed, it’s not you.” 

Multiple Roles

Patients who are considering enlisting the help of a patient advocate should first consider: What kind of help is needed? The role of a patient advocate can vary broadly, depending on the patient’s needs and the patient advocate’s area of expertise. Some patient advocates have medical training and assist with navigating medical care, sometimes even specializing in areas like oncology. Some focus on billing issues. Others may assist with more administrative tasks: scheduling medical appointments, helping people sign up for Social Security or Medicare, organizing medical information or hiring a caregiver. Some work in teams to provide a range of skills and expertise.

Patient advocates often fill the communication gaps that can occur with older adults who have multiple medical issues. Deirdra Kindred, an RN and patient advocate, was hired by a family to assist their 92-year-old mother, who was losing weight and refusing to leave her room in the upscale, assisted living facility where she lived. 

“She was suffering from diarrhea and nausea and did not want to leave the room because she was afraid she’d throw up or have an accident,” Kindred said. She learned that the woman was taking 17 medications, some of which had been prescribed for years. She had several specialists but no one assessing her overall medicine intake. Working with the woman’s doctors, Kindred helped her wean to nine medications, and the diarrhea and nausea disappeared. Soon the woman was leaving her apartment, eating regularly and enjoying life again.

A patient advocate understands the system, knows how to ask the right questions and can lessen the burden for patients and their families. 

Some patient advocates assist in navigating insurance and correcting billing errors. Experts estimate that as many as 80 percent of all medical bills contain errors. Yet the process for correcting those errors is often labyrinthine. If there’s a snag in insurance processing, a hospital typically will continue to bill the patient and even threaten to send the bill to a collection agency. Getting the right people on the phone who can resolve the problem—either at the hospital and/or the insurance company—can prove difficult and time-consuming. Most patients don’t have the knowledge or the energy to tackle the challenge. A patient advocate who works in this area, however, understands the system, knows how to ask the right questions and relieves some of the burden for stressed patients and their families.

“When our case managers help a patient, it takes an average of 22 phone calls to resolve a billing issue,” Donovan said. “Having someone who knows how to talk to billing offices and to insurers is incredibly helpful.” 

Patient advocates also help navigate the vastness of the medical system. Barbara Abruzzo, a registered nurse, helps clients obtain second opinions, sorts out their options and manages complex care. She also may assist families in researching which doctors, hospitals or research facilities are best, given the patient’s condition and situation. 

Abruzzo has organized conference calls that brought together family members, hospital administrators, surgeons, physicians and nurses at once to plan a patient’s care when it required the expertise of several different specialists. For that kind of complex care navigation, she believes, clients should seek a patient advocate with medical training. 

“Doctors see that I know what I’m doing and that I mean business,” she said. 

In the Hospital—and Out 

Some patient advocates offer hospital accompaniment—visiting or even staying at the client’s bedside when family members can’t be there or feel they can’t advocate effectively in a complex situation. 

“Too many medical professionals are overworked and overwhelmed,” said Lisa Berry, a patient advocate. “For years, doctors have told me off the record that hospitals are dangerous places, because they cannot do their jobs. It’s very easy for mistakes to be made.” 

No one should go into a hospital without someone there to advocate for them, whether it’s a professional advocate or a family member, said Michael Weisburg, MD, a gastroenterologist. Most primary care physicians no longer have hospital privileges to attend to their patients when they’re hospitalized. Instead, patients’ care is managed by hospitalists—physicians who coordinate their treatment until they go home. Hospitalists work only in hospitals, which employ them, and the care they provide is dictated by each institution’s guidelines.   

“The hospitalist is someone who has never seen you before, knows nothing about you and doesn’t have the time to learn about you,” Weisburg said. “And that doctor in charge may change every couple of days.”

A patient advocate can help as patients leave the hospital—a critical juncture when things can easily go wrong. 

Weisberg experienced this dilemma himself during his 91-year-old father’s hospitalization for a broken hip. While visiting, Weisburg saw that his father was agitated and trying to get out of bed. Weisberg suspected a problem with his catheter and alerted a nurse. However, the hospitalist on duty was occupied by another emergency and simply prescribed a sedative, which only made the patient more agitated. Still busy with the emergency, the hospitalist ordered the nurse to restrain Weisberg’s father. 

Because restraints are dangerous (they can cause patients to aspirate), Weisberg called another hospitalist who had cared for his father earlier and was off duty. That hospitalist ordered nurses to check on the catheter, which, as Weisberg suspected, was not functioning properly. Another catheter was inserted and quickly filled with two bags of urine. Weisberg’s father immediately felt much better and fell into a deep sleep. 

“If I hadn’t been there, he could’ve been put into restraints, aspirated and died,” Weisberg said.  

Another task of patient advocates is to assist clients as they transition out of the hospital for recovery at home, at rehab or at another facility—a critical juncture when things can easily go wrong. Often, hospitals will discharge patients who need ongoing medical attention, expecting family members to pick up the responsibility at home. Patients who don’t have family or friends willing or able to help may be left to fend for themselves. 

Patients do have legal rights in this kind of situation, Berry noted, but most don’t know that. She works hard to make sure her clients aren’t discharged prematurely, which often occurs with Medicaid coverage or similar programs that pay minimal reimbursements to hospitals. In one case, a hospital tried to discharge one of her pro bono clients too early; the social worker on duty told Berry there was no option to protest. Berry knew better and insisted on an emergency hearing with an administrative law judge. The patient stayed. 

Finding a Patient Advocate

The Alliance of Professional Health Advocates offers a complete list of services that patient advocates provide, as well as AdvoConnection, a searchable directory of patient advocates. While users may search by zip code, a patient advocate doesn’t necessarily need to be local. Many advocates can assist remotely, depending on the situation. The Patient Advocate Foundation, a nonprofit, offers a range of services, including trained volunteers who can assist patients with billing and getting access to care; much of their work is done remotely. 

Keep in mind that independent advocates differentiate themselves from nurse navigators or patient advocates hired by hospitals or insurers, who don’t ultimately answer to the patient.

Another good place to start is with nonprofit groups that support people with specific diseases or conditions. These organizations may offer referrals to patient advocates, including some who are volunteers. The American Cancer Society, for example, can connect patients with advocates in some areas of the country. 

When looking to hire a patient advocate to help navigate medical care, talk to at least three candidates by phone, Berry said. (Most will do a preliminary consultation at no cost; ask first.) To get a good feel for whether someone will have the expertise to address particular concerns, provide a clear description of the patient’s issues and needs. 

Family as Advocates

Family members can be effective patient advocates, especially if they’re quick studies and have the time to devote to the task. Bruce Carr found himself in that role in early 2019 when his sister, Joan, 72, was hospitalized with a severe infection that was complicated by underlying conditions. Carr traveled from his home in Ohio to be near her in Dallas. Quickly, the task became his full-time job. 

“I dropped everything,” said Carr, who is a turnaround and bankruptcy consultant. “Thankfully, I was between gigs and in the financial position to take the time off.”  

He spent his days talking to her doctors and helping Joan make tough decisions; he devoted his evenings to reading medical literature and insurance information. Even though his sister was receiving world-class care, Carr said, she needed someone to advocate for her. 

Carr’s advice: keep a journal and write everything down. 

“So much comes at you so fast, you can’t remember if you don’t write it down,” he said.

Eventually, he made decisions when she was unable to do so herself. Joan passed away in September 2019; without his presence, Carr believes, she would have died six months earlier. 

Family members can find resources online to assist in their advocacy efforts. The National Patient Advocate Foundation offers tips for communicating with health care providers. Another nonprofit, Zaggo, offers a variety of resources including a free, downloadable chart for tracking treatments and medications. 

Not everyone, of course, has a family member like Carr available and able to focus on a loved one’s care; professional patient advocates can fill that gap. Plus, disagreements can arise in the family over the best course of action for a family member’s medical care, especially if the patient is unable to make decisions herself (or himself). In those situations, a professional patient advocate can serve as a neutral third party, someone who can objectively weigh available treatment options and help families better resolve disagreements. 

Whether it’s a family member or a professional, Weisberg says, what’s most important is to have someone in your corner when you’re sick. 

“There’s got to be someone—a parent, a spouse, a child, someone you pay—who has your best interests at heart and can stand up for you,” he said. 

 

Breaking the Age Barrier

Art Russell, 60, counts at least a dozen 20-somethings as friends: the guys he fences with; a 26-year-old colleague at work; and several people who attend his church. Although he also has many friends his own age, Russell values those younger ones.

“They have a fresh perspective that reminds me to stay enthusiastic about life,” he said.

Unfortunately, Russell’s social circle is unusual.

According to a 2017 report by Generations United and the Eisner Foundation, most Americans rarely have meaningful interactions or conversations with others (not family members) who are 20 or more years younger or older.

“Intergenerational friendships are the exception rather than the rule: for the most part, age segregation prevails,” the report concluded.

Most of us live in age bubbles. People tend to socialize within their own age groups at work or in school. Families with young children flock to kid-friendly neighborhoods; young adults head to apartments and condos in trendy locations; older adults whose children have grown gravitate to retirement communities.

Even multigenerational settings—such as churches, synagogues or community centers—tend to tailor programming by age: a yoga class for seniors; a Bible study for young adults; a science camp for kids. As a result, most of us have few opportunities to make friends with people outside of our own age groups.

“All of this is counter to what we know about what people need to thrive developmentally,” according to Eunice Lin Nichols, vice president at Encore.org and director of Gen2Gen, a campaign to encourage intergenerational connections. “Experts agree that age segregation contributes to social isolation and can reinforce stereotypes and perpetuate ageism.”

Friendship Transcends Age

When Mary Ann Eaton, 91, broke her hip in early 2018, she hired Diane Cannon, 60, to drive her around and to help with chores while she recovered. The two women became fast friends; now they talk by phone at least once a day and get together often. The 31-year age difference seems irrelevant.

“It’s very easy to talk to Diane,” Eaton said. “We have the same sense of humor, we both love animals and we’re both hard workers.” (One of Eaton’s first requests was for Cannon to drive her to a class to keep her real estate license up to date.)

If more older people made younger friends, experts believe that could help address a number of concerns related to the aging of the US population. Intergenerational friendships might counteract the “loneliness epidemic” that was identified in a 2018 Cigna survey of more than 20,000 Americans over age 18. Nearly half of respondents reported sometimes or always feeling alone (46 percent) or left out (47 percent).

…millennials are awesome. Almost none of the young people I know fit the stereotypes.

— Art Russell, age 60

Older people tend to stay healthier, both physically and cognitively, when they have strong social connections. (One study showed that loneliness has an impact on mortality similar to smoking 15 cigarettes a day.) Also, when elders nurture friendships with younger people, it helps assure that those who live into their 80s and 90s can maintain a vibrant social life even if they outlive their peers.

 Another advantage: intergenerational friendships promote mutual learning and enrichment and dispel ageist stereotypes. Even though he works in tech himself, Art Russell’s younger friends have tipped him on a couple of useful smartphone apps that he uses every day. When asked, he’s been able to offer them advice on relationships and careers.

“And I think millennials are awesome,” he said. “Almost none of the young people I know fit the stereotypes.”  

That’s a common side effect of intergenerational friendships—ageist stereotypes are quickly contradicted.

“If we get isolated by generation, we only talk about what’s relevant to our own generation,” said Donna Butts, executive director of Generations United. “We are richer and more able to look beyond our immediate concerns when we’re engaged with people in other age groups. To really slow down and listen—that’s how we share our humanity with each other.”  

Friends Gone Viral

A man in New Jersey befriended a woman in Florida by way of Words with Friends, an online game. Normally, that wouldn’t make the news. But in this case, the man is a 22-year-old African American rapper and the woman is an 81-year-old white retiree. A photo of their first meet-up went viral on social media, and the story made the New York Times in 2017.

What would it take to make friendships like this more common, rather than a newsworthy rarity? A number of initiatives are connecting older and younger people:

  • In Boston, a startup called Nesterly pairs older homeowners with young adults, especially students, who need housing. Housing is expensive in Boston, yet an estimated 90,000 spare bedrooms are going unused in the homes of aging empty nesters. The living arrangements have created friendships like that of Sarah Heintz, who’s in her 70s, and her roommate Dean Kaplan, 25. They share meals and enjoy talking politics.
  • Judson Manor, a retirement community in University Circle in Cleveland, offers a handful of apartments at no cost to 20-something graduate students at the nearby Cleveland Institute of Music, in exchange for performing for the residents. Friendships naturally arose between the older residents and the students. Viola student Caitlyn Lynch became so close to 90-something resident Clara Catliota that she asked her to join her wedding party. Catliota couldn’t travel to Oregon for the ceremony, so she hosted a wedding celebration for the couple at Judson.
  • A social services program called DOROT (which means “generations” in Hebrew) connects 7,000 children, teens and young adults with 3,000 older adults in New York City. The program enlists volunteers to serve as “friendly visitors” to isolated older adults, hosts intergenerational chess games and art sessions and provides opportunities for older adults to read to children. DOROT has sparked friendships like the one shared by Ramon Couzon, 78, and Vera Ruangtragool, 34. In 2015, Ruangtragool delivered a gift package from DOROT to Couzon shortly after his wife of 30 years died. He told Ruangtragool he was struggling with her loss; she responded by sharing how meditation had helped her find peace. Now, Ruangtragool visits Couzon weekly; the two chat before doing a 40-minute guided meditation. Both say they’re happier and more hopeful as a result of the friendship.

While programs like these can help connect people, experts say that awareness, an eye for shared interests and a little extra effort can lead to friendships that grow organically.

“It may start with something as simple as saying hello to your neighbor,” Butts said. “Everybody who lives in a neighborhood or an apartment building has the potential to have more interactions with people of other age groups.”

Intergenerational Collaboration

Intergenerational collaboration can also benefit organizations, Butts noted. Research shows that when teams involve people of different generations working together on an artistic or business project, they’re more productive and resourceful. Such collaboration can also spark intergenerational friendships.

That’s what happened when filmmakers Matt Starr, 29, and Ellie Sachs, 25, decided to remake the classic film Annie Hall with actors recruited from an older adult community, Lenox Hill Neighborhood House in New York. Starr and Sachs appreciated how the older actors consistently showed up on time early in the morning and were willing to work hard, even in hot weather. After the project ended, the young filmmakers and the elder actors continue to get together occasionally for lunch, a stroll in the park or even dance classes.

When young people don’t appreciate what older adults have to offer, Sachs said, “I think we just lose the potential to make incredible friends.”

Sachs said her new friends have shared guidance about love and life that she’s found more valuable than advice from her peers.

An intergenerational friendship has also enriched the lives of Courtney Cox and Carey Smith, both personally and professionally. In 2001, the two women started jobs in the same week in the art department of JCPenney. Cox was fresh out of school; Smith was returning to work after a hiatus to raise two kids. Despite the 27-year age difference, the two women made an immediate connection.

“If you’re creative, you tend to hang out with creative types,” Cox said. “I don’t notice the age difference. We have a lot of belly laughs. You don’t have that with everybody.”

Now, at 41 and 68 respectively, Cox and Smith have new employers and live in different cities but remain close friends. Recently, Cox needed graphic design help on a project for her current employer, so she hired Smith as a contractor. Smith traveled to North Carolina and stayed at Cox’s home during the three-month project. Cox said she often relies on Smith’s depth of experience, both in work and personal situations. Her older friend has faced some challenges—such as caring for a parent diagnosed with cancer—and was able to guide Cox when she faced the same situation with her own mother.

An intergenerational networking group in New York stages events that draw sold-out crowds.

That kind of mentoring doesn’t just benefit younger people; it also enriches the lives of the older people who serve as mentors. The Harvard Study of Adult Development, which has tracked more than 700 men over almost 80 years, found that those in middle age and beyond who invested in caring for and developing the next generation were three times as likely to be happy as those who did not do so.

“We were intended to live in community with one another, with older generations bringing wisdom, perspective and a lifetime of skills and experiences to younger generations, and younger generations bringing vitality and joy to the older generations,” said Nichols of Gen2Gen.

Younger people too see the need to tap into the wisdom of older adults. Charlotte Japp, 28, was “desperate” to connect with older mentors for advice on everything from maneuvering office politics to how to confront a manager about a difficult situation with a colleague. At the time, she was working at the online news site Vice; none of her colleagues were over 45. So Japp started CIRKEL, a networking platform that has organized a series of intergenerational events in New York that have drawn sold-out crowds.

Each event brings together older and younger people in a particular industry for informal mingling and structured discussions. A networking night for fashion professionals, for example, gave young millennials getting started in the field a chance to meet established influencers like Anna Wintour, 69, editor of Vogue, and Robin Bobbé, a fashion model in her 60s.

“For most CIRKEL attendees, the experience of coming to a party where the room is filled with people from all different ages is really new,” Japp said. “Many of the guests are having meaningful, enthralling conversations with someone from a different generation for the first time, and their view of that generation is shifting with each interaction.”

One of Art Russell’s younger friends, Robby Hare, 30, experienced that shift himself.  Before getting to know Russell and other older people in his church, Hare thought of boomers as the authors of the ubiquitous Internet memes that disparage millennials. Now he sees them as allies.

“When you take time to get to know someone, you realize they don’t fit the stereotype,” he said. “As I got to know Art, I began to see him as a person and as a friend, not just an old guy. It’s really hard to be prejudiced against people you know and like.”  

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