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Author: Editor

Losing Sight

Posted on by Editor

In 2014, Sharon Kassakian, 75, was diagnosed with macular degeneration in one eye. But the condition was manageable, and she felt confident enough to move to Portland in late 2016 to be closer to family. Then, in 2018, her vision began to deteriorate. She started having difficulty seeing with her other eye. 

“It was a nightmare,” she said. “I was adjusting to life in a new city and adjusting to vision loss.” 

Three years later, Kassakian’s eyesight remains very unstable—OK one day, not so good the next. Doctors can’t promise she won’t eventually lose her sight entirely. The diagnosis was emotionally devastating, Kassakian said, similar to her earlier experiences in life when family members died.

“You’re losing something that you’ve had your whole life,” she said. “I wake up every morning with fear. Will it be the same, worse or better?”

More and more older adults will face similar challenges in the coming years. According to the National Eye Institute, about one-third of Americans over 65 are living with some form of “vision-reducing eye disease.” As the population ages, that number will increase, making vision loss a serious, public health issue.

“This year, the oldest baby boomers are turning 75, when age-related vision loss really kicks in,” said Ed Haines, chief program officer for the Hadley Institute, a Chicago-area nonprofit supporting people with blindness or vision loss. “We have a looming epidemic that no one has planned for, and we don’t have an infrastructure to deal with it.”

What Can Be Done?

The leading causes of blindness and low vision in the United States are age-related eye conditions—macular degeneration, cataracts, diabetic retinopathy and glaucoma—and the numbers are on the rise. Cases of macular degeneration, for example, are expected to climb to 17.8 million by 2050 among those 50 and older, according to the Centers for Disease Control and Prevention. Cases of diabetic retinopathy are expected to quadruple by 2050. 

For older adults affected, vision loss can severely affect quality of life.

“It’s a big loss of independence,” said Neva Fairchild, national aging and vision loss specialist for the American Foundation for the Blind. “Things you were able to do before —read your mail, pay your bills, watch TV, cook meals—they’re all taken away, at least until [you] have some accommodations in place.”

Many aging-related eye diseases can be controlled with treatment—if caught early. In addition, vision loss can often be managed with assistive devices, such as corrective lenses or magnifying devices, and occupational therapy that helps people learn techniques to adapt and maintain independence. But Medicare doesn’t always cover the cost of eye exams or assistive devices, and doctors often don’t have the time or knowledge to refer patients to therapists.

Tech and training can help, but many doctors don’t even know they exist.

“Historically, in this country, visual rehabilitation did not evolve under the medical model, therefore it’s typically not covered by Medicare or private insurance companies,” said Haines. “If you break a hip, a discharge planner makes appointments with a physical therapist and a plan for getting back on your feet. When you get a diagnosis of irreparable vision loss, it’s devastating, yet you’re sent home with nothing.” 

The key is to connect patients with the right technology and the right training, but often, patients and even doctors don’t know that exists. 

“I’ve heard it a thousand times: ‘The doctor told me nothing more can be done,’” Fairchild said. “What the doctor means is that there’s nothing more that can be done medically. There’s no surgery or eye drops that will give back the patient’s vision. But there’s almost always something more that can be done to help the older adult adjust and function more independently.”

Catch It Early 

If caught early, many causes of aging-related vision loss, including glaucoma and cataracts, can be treated before they cause significant damage.  

“In general, if they’re treated early enough—with medicines, surgeries, laser treatments and regular follow-ups—the vast majority of patients don’t lose vision from a functional standpoint to the point where it severely limits their daily activities,” said Donald Abrams, MD, ophthalmologist-in-chief and director of the Krieger Eye Institute at LifeBridge Health in Maryland. “The sooner we treat it, the better off you’ll be.” 

The best way to protect your vision is to have regular eye exams.

While “dry” macular degeneration (the more common type, which generally leads to gradual loss of vision) is not treatable, “wet” macular degeneration (the type that causes leaky blood vessels in the eye) can usually be treated with injections. 

A patient’s best defense: regular eye exams beginning at age 50. Black and Hispanic people, who are more prone to many age-related eye conditions, and those with a family history of eye disease, should start annual exams at age 40. A comprehensive eye exam should include a test of eye pressure as well as dilation of the pupils. (Not all optometrists perform all of these diagnostics. Ask first.) A thorough eye exam can detect genetic conditions or abnormalities in the eye that may indicate a need for more surveillance. Medicare pays for comprehensive eye exams for some patients with diabetes or those with increased risk for glaucoma due to ethnicity or family history.

Prevention is also key. Good health habits will reduce the likelihood of losing one’s vision—exercising, eating a balanced diet including dark leafy greens and fish high in omega-3 fatty acids, avoiding smoking, wearing sunglasses and a brimmed hat outdoors, and management of other health conditions like diabetes. Doctors may also recommend vitamin supplements (usually a combination of antioxidants, carotenoids and omega-3 fatty acids) for people with signs of macular degeneration. 

Problems beyond Lost Vision

Elise Franz, 67, (not her real name) was a successful graphic designer and freelance writer for art magazines until six years ago, when she had cataract surgery. Instead of improving her eyesight, the surgery seemed to trigger a cascade of other problems, including macular edema, diabetic retinopathy, glaucoma and optic nerve damage. 

Once a frequent traveler who’d jet off to Paris on a whim, now Franz rarely leaves her home except to go to the doctor.  She once churned out articles easily, getting lost in the flow; now the writing process is tortuously slow. She positions her face right next to the computer and uses extra-large type. 

“Everything is problematic,” she said. “And people don’t understand. I’ll go to the doctor’s office, and they’ll hand me a pile of paperwork. I tell them, ‘I can’t read that.’ They hand it to me anyway.”

Franz was recently diagnosed with heart issues too, which she thinks resulted from her inactivity due to her vision loss.

“I used to love to exercise, to go swimming,” she said. “Now, it’s hard to do everything. The fact that I can’t see has had deleterious effects on my physical health. It’s not like I can go out my front door and go for a walk.” 

As Franz’s story shows, older adults with vision loss often suffer more than a loss of the ability to enjoy favorite activities. Vision loss can exacerbate other health problems and lead to emotional and psychological challenges. With a diagnosis of macular degeneration, for example, “Your perception of yourself, and vision of your future, is thrown into total disarray; you despairingly imagine a life of darkness, social isolation, dependency, risky treatments, loss of friends, hobbies, participation in activities of interest such as sports, theater, art and reading—in short, a kind of early death,” wrote psychiatrist Arnold Wyse, MD. 

Older adults who are visually impaired often become isolated. Everyday activities, like attending worship services or eating a meal at a restaurant with friends, become problematic.  

“People with vision loss often become paranoid about eating out,” Haines said. “They don’t want to drop food or spill it on themselves. Navigating a buffet is a nightmare. You’re unable to see when people are waving at you. That’s a big deal when I’ve worked with folks in small towns because everybody waves. And if you don’t wave back, if the person who waved doesn’t know you have a vision impairment, they feel they’ve been insulted.”

Haines added that the Hadley Institute typically gets a surge of inquiries after the holidays from families who notice a decrease in a loved one’s vision during a visit. Often, fearing for the elder’s safety, families will rush to move the person into assisted living, without taking the time to learn about other options to allow the elder to remain independent. 

Help from Tech and Training

Older adults can tap into resources that help them adjust and function—if they know where to look. The federal government maintains the Older Individuals Who Are Blind Technical Assistance Center, a clearinghouse of agencies serving older adults with vision loss. 

Many digital devices are helpful for people with vision loss. Virtual assistants, like Amazon’s Alexa, can provide information (time, weather forecast, sports scores, even make phone calls) in response to voice requests. Some devices can be operated via speech commands, although there’s a learning curve to adapt to that. 

“Apple did the visually impaired community a huge favor,” Haines said. “Every Apple device can be accessed with speech commands. If you lose your vision, you don’t have to throw out your iPad. We’ve had individuals in their 90s learn how to do this.”

Because of Apple’s success with speech access, Haines added, other platforms like Android are adding similar features. 

However, technology isn’t the only fix, Haines cautions. Adapting the home environment and learning how to perform daily tasks with reduced or no vision are often even more helpful. The Hadley Institute offers an extensive catalogue of online, distance-learning workshops, all free, that teach people how to adapt tasks of daily living for reduced vision. 

For example, a short video demonstrates how to pour liquids into a cup, using simple techniques like squaring oneself up next to the counter, adding task lighting and placing the cup on a tray of a contrasting color, making it easier to see and easier to clean up spills. (View a short sample here.) The workshops can be ordered by mail in other formats too: large print, digital talking book audio, or braille. 

Occupational therapists can also help patients with vision loss. They visit patients’ homes to coach them on ways to safely manage their activities of daily living, including bathing, toileting, cooking and cleaning. They also may recommend adjustments in the home environment, customized to the person’s needs and type of vision problem, like adding task lighting in key spots or installing drapes to block glare. 

Making Adjustments

After connecting with a variety of resources, Kassakian feels more hopeful now.

She worked with a therapist who helped her with the grieving process that came with the loss of vision. She found a nonprofit ride service that takes her to doctors’ appointments. She discovered Hadley’s free online workshops. She joined two support groups, both offered via Zoom—one by Hadley for emotional support, another for sharing tech tips. At the latter, she learned how to use the accessibility features on her iPhone.   

“I have blind friends now, and I’m just amazed at how they sometimes function even better than I do,” she said. “There is a grieving process, but you can learn to live with vision loss because there are so many services and resources.  Now I know where to turn for support.” 

Crafting: A Way to Cope during the Pandemic

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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.” 

Row, Row, Row Your Boat

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Hanne Caraher loves rowing. She’s very good at it. So good, she’s won a national gold medal and has competed in championships in Canada, Poland, Germany and Hungary (she won there too). After years of early morning practices—which meant arising at 4:20 a.m. five days a week—she’s now rowing with the Gray Knights at Thompson Boat Center in Washington, DC. 

She’s only been rowing for 11 years now. And she started when she was 72. 

“I found all the things that were connected with rowing were fun. It totally changed my life,” said Caraher, now 83, who also won a medal in 2019 on a boat rowed by competitors whose average age was 80.

Caraher is not alone in her love of the sport. More and more older adults are discovering rowing as a way to stay physically active, as well as mentally and socially engaged. USRowing, the sport’s governing body, says its membership grew from about 67,000 in 2013 to 75,000 in 2018 (the most recent tally available). About 14 percent of members are 50 and older. (While there’s no gender breakdown for older rowers, women make up about 53 percent of USRowing’s total membership.) 

At the 54th Head of the Charles Regatta—one of the sport’s biggest events, held on the Charles River in Massachusetts—about a quarter of entries in 2018 were men and women 50 and up. 

Even as COVID-19 curtailed many races and team activities, older rowers still stay in shape through indoor rowing, virtual races, singles boats (allowing rowers to remain safely distanced) or other safety measures. And while some competitions are on hold, that doesn’t dampen the enthusiasm that older rowers express for the sport.

“Rowing has got under my skin like no other form of exercise ever has,” said Patricia Carswell, a British rower in her 50s, who blogs and podcasts about rowing at GirlontheRiver.com. “The river has me in its thrall, and I love the endless challenges that go with such a technically difficult sport.”

Vigorous but Safe

Rowing offers all the benefits of vigorous exercise, but with minimal risk of injury or impact on the joints—a plus for older adults. Contrary to popular belief, rowing is not just an upper-body exercise. It uses all the body’s major muscle groups: legs, arms and core (torso). 

“Rowing puts only minimal stress on the joints, far less than walking, running or biking,” said Mark Slabaugh, MD, an orthopedic sports-medicine surgeon with Orthopedics and Joint Replacement at Mercy Medical Center in Baltimore. “Only swimming is less strenuous on the joints. Those with limited range of motion in any of their joints can still participate in rowing, due to the low stress on the hips, knees, ankles and shoulders.”  

Slabaugh said he might caution patients with symptomatic, rotator-cuff tears (a type of shoulder injury) against rowing. Otherwise, the sport is safe for most people, he said, adding that newbies of any age should start slowly, building up intensity gradually.  

Research confirms the fitness benefits. Slabaugh cited a 2012 study in Japan that measured the results of an indoor rowing regimen for a group of older men: improved aerobic capacity, decreased fat and improved muscle tone, all key metrics for functional health for older people. Researchers have also found that the lungs of rowers who train seriously use oxygen more efficiently than those of most other athletes. 

The focus on the present moment and mindfulness in rowing is a kind of Zen.

— Charles Gilbert

In addition, studies have found that rowing improved physical fitness among breast-cancer survivors. They were once urged to avoid lifting or exerting their shoulders, to reduce the risk of lymphedema; now, many doctors encourage them to row. Rowing groups have sprung up specifically for breast-cancer survivors. 

Like other forms of vigorous exercise, rowing may ward off depression. Some rowers say that the rhythmic, repetitive nature of rowing is like meditation.

“The focus on the present moment and mindfulness in rowing is a kind of Zen,” said Charles Gilbert, 66, who rows with Princeton National Rowing Club in Princeton, NJ. “A Zen practitioner told me that my rowing 1.5 hours a day on the water constituted my Zen practice.”  

Rowing also benefits the brain. It involves learning new skills that require concentration, which may offer added brain health benefits. Most boat clubs offer “learn to row” programs, generally about six weeks long, to teach newbies the basics, but rowers never stop improving their technique. 

“Rowing is a lifetime sport,” said Tom Murphy, 67, president of Rocky Mountain Rowing Club in Denver. “It appears easy to learn the basic motion, but it takes a lifetime to master.” 

Competition as Motivation

While older adults can row recreationally, many compete as part of a team in races and regattas, and that can push them to train harder and more consistently. 

“When you’re in a boat with other people, you can’t stop,” said Lisa Miller, 56, who rows with Dallas United Crew in Dallas, TX. “It pushes you to get past your limits. On my own, in the gym, I would’ve stopped.”

Miller likes the sense of accountability. For example, she said, if one person doesn’t come to practice, the coach must rearrange seating on the boats. “You don’t want to mess up your teammates,” she said. “You don’t want to get that call from the coach, asking, ‘Where are you?’” 

Rowing is one sport where team members look forward to getting a year older. 

For some, rowing is their first experience of athletic competition. 

“I’m a pre-Title IX babe,” said Joanne Caye, 72, a rower in North Carolina. “I didn’t get this stuff when I was in school. Just to be able to compete is something that is really heady for me. I get pushed in absolutely wonderful ways. I never knew that about me.”

Caye was introduced to the sport in her late 40s through another mom on her son’s high school rowing team. Now, 25 years later, her son is grown (and no longer rowing) and Joanne is retired, but she’s still rowing as part of Carolina Masters Crew Club.

Rowing allows people to remain competitive even as they age. Classification is based on age, and handicaps are assigned based on these classifications, allowing young and old to compete fairly, side by side. Gilbert jokes that rowing is one sport where participants look forward to getting a year older, because that helps boost the boat’s average age, raising the handicap. 

“In rowing, the goal is to get older and stronger, so that you can keep contributing,” he said. 

‘Built-in Sisterhood’

Rowing teams often form close-knit communities that stay connected outside of practice and during the off-season. Many clubs host social gatherings, philanthropic service projects and classes for disadvantaged children or disabled veterans. For retired older adults, regular rowing practice creates routines and teamwork that many miss after leaving the professional world. 

As a retired professor of social work, Caye sees a lot of value in the intergenerational social connections she’s made as a rower. “It’s wonderful to have a built-in sisterhood,” Caye said. “Rowing connects me with women who are younger than me and keeps me attuned to changes in trends.” 

Liz Jenista, 37, is one of those younger women on Caye’s team. She’s been rowing with the same club for 15 years. Having moved from California to North Carolina soon after graduating from college, Jenista calls her rowing club her “multigenerational family away from my actual family.” Friends made through rowing have become an important support network, helping her and her husband navigate the job market, purchase a house and even parent their two children, ages six and 10. Some rowers handed down gently used clothing and supplies when her children were babies; others have babysat. When they rode together for hours on the way to regattas, Jenista often asked teammates for advice on child rearing.

“Talking through behavioral challenges and hearing about [older members’ children] who faced similar challenges but grew up and became successful adults—that’s so reassuring,” Jenista said.  “It’s been very valuable having the perspective of older women.”

Time in Nature

Most competitive rowers spend time on indoor rowing machines, whether in the off-season, during inclement weather or due to COVID-19 restrictions. But the time spent outdoors is a key attraction—and a major benefit—of rowing. 

“The benefits are even more profound when you’re in nature, breathing clean, fresh air and getting away from the normal daily routine, especially during COVID when we need to avoid staying indoors for too long,” said sports-medicine surgeon Slabaugh. 

There’s a growing body of research that suggests time spent outdoors itself has benefits. In a 2019 study published in Scientific Reports, a journal published by Nature, 20,000 study participants reported better health and well-being when they spent 120 minutes or more in nature each week. 

Many rowers commented on the magical feeling of rowing on a body of water early in the morning before the world is awake. 

“You’re getting back to nature,” said Miller, the Dallas rower. “You’re out on the water and it’s quiet, except for the clicks of the oars. You see these beautiful sunrises. It’s a great way to start the day.” 

In the Red

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At age 50, Sarah Smith found herself divorced, bankrupt and saddled with debts inherited from her ex-husband. When her two children chose to attend private colleges, she took out student loans. Now, at 66, Smith (not her real name) still owes about $60,000.

“Pretty much everyone told me to not take on college debt, but I wasn’t going to let my kids suffer because of their dad’s irresponsibility,” she said. 

In finding herself still in debt as she nears retirement age, Smith is far from alone. Financial debt among older Americans has skyrocketed in recent decades. And that trend was well underway before the COVID-19 pandemic—a source of financial calamity for many. 

From 1999 to 2019, total debt for Americans over 70 increased 543 percent. That’s the largest percentage increase for any age group, according to the Federal Reserve Bank of New York. Similarly, those in their 60s have seen their debts—including mortgages, auto loans, medical bills and other credit—balloon by 471 percent. Many who are nearing retirement age feel their debts are excessive and say they are financially distressed, according to a report by the TIAA Institute. 

Few statistics are available so far on the impact of COVID-19 on older people’s finances, but one study found that the nonmortgage debt burden of the average retiree doubled in 2020. Forced early retirement, job loss or reduced hours are likely contributors. 

Experts don’t expect the situation to improve any time soon.

“We’ve had two significant economic crises in barely over a decade,” said Mark Hamrick, senior economic analyst for Bankrate.com. “Many people were still trying to claw their way back to their previous position, having suffered setbacks from the Great Recession [of 2008]. Now they have the interruptions in income and employment due to the pandemic.” 

As a result, many people turned 65 during the last year after spending the past 12 years fighting just to stay afloat. They saved little or no money for retirement during their 50s, the decade when financial planners traditionally advise investors to focus on building a nest egg. Some were forced to start taking Social Security payments earlier, decreasing the monthly amount they’ll receive in their remaining years.

Once, paying off the mortgage was a big goal in life. Now, people refinance their mortgages to borrow cash. 

“For those lucky enough to become re-employed [after a job loss], many had to switch occupations and take a pay cut,” said Lori Trawinski, director of finance and employment for AARP’s Public Policy Institute. “And some gave up looking for a job.” 

Many Americans carry debt—most financial experts would say too much debt. Younger people have many years of earning power ahead to pay off debt; for an older adult, finding a full-time job that pays well becomes increasingly difficult. Those with health problems may not have the ability to work at all. 

Debbie Burkham, a financial coach with the Elder Financial Safety Center at the Senior Source in Dallas, sees a variety of reasons why older adults carry debt: job loss, medical bills, divorce, student loans and support they provide for adult children and grandchildren. Plus, she adds, it’s easy for Americans of any age to get credit. 

“In the 1970s and 1980s, you applied by mail for a credit card and waited several weeks, hoping for a credit line of maybe $500 to $1,000,” she said. Today, many find their mailboxes full of letters offering pre-approved credit cards. For those with bad credit, there are always payday loan businesses, which charge exorbitant interest rates and added fees for late repayment. 

Credit cards aren’t the only source of temptation. 

“Our financial system now allows for easy refinancing of a home, which gives the borrower cash for any purpose: to improve their home or to pay for college, to buy a new car or to pay off another debt,” Trawinski said. 

Contrast that to older adults of a generation or two ago, who had an aversion to debt after surviving the Great Depression of the 1930s. For that generation, “Paying off the mortgage was a big goal in life,” Trawinski said. “People would have mortgage burning parties, because it was a cause to celebrate.” 

How Debt Accrues

Why do so many people reach retirement age still owing money? 

Student loans are one surprising source of debt. A 2017 study by the Consumer Financial Protection Bureau found that the number of American consumers ages 60 and older with student loan debt quadrupled between 2005 and 2015, from 700,000 to 2.8 million. A few are paying off their own loans or those of a spouse, but the majority had funded the education of a child or grandchild, either by taking out a loan or acting as a cosigner.

Women and people of color are particularly burdened by college debt. The American Association of University Women found that Black women reported the highest levels of outstanding debt compared to white men and white women, with Black women racking up $37,558 in undergraduate loans, compared to $31,346 for white women. Nearly 60 percent of Black women report financial difficulties while repaying college loans. 

Then there are the adults in midlife (40-64) who provide financial support to their parents or their adult children—or both—according to an AARP telephone survey. Half of midlife adults continue paying for basic expenses like cell phone bills, groceries and rent for children over 25; nearly a third report providing similar financial support for their parents. This creates financial pressures that reduce retirement savings during a crucial period for building wealth.

Sometimes debt leads to deeper debt.

Another pitfall: medical costs that typically increase as people age, coupled with the skyrocketing price of health care and insurance. Even older adults with good insurance may end up owing thousands of dollars in deductibles and copayments after a single medical episode. 

On top of all of that, older adults are often targeted by scammers and unscrupulous salespeople. Burkham counseled an older man who was pushed to buy a new car every time he took his car into a dealership for repairs. The new purchases were rolled into his existing car loan. Now he’s driving a Ford Taurus with car payments of $900 a month. 

In some cases, debt just leads to deeper debt. Burkham worked with a client in her early 70s whose credit cards were maxed out.

“She lost her job, and health issues kept her from going back to work,” she said. “She used her credit cards to fill the gaps until her credit was maxed out.” Living on only about $1,500 a month in Social Security, the client can’t make even the minimum payments. Without the means to pay an attorney, bankruptcy isn’t an option. Right now, the woman is relying on the generosity of friends to survive. 

Who’s in Debt

Black people and lower-income earners are hardest hit, and much is based on socioeconomic inequalities. 

For example, before the pandemic, the unemployment rate among Black Americans was twice that of white Americans. Black workers earn less than white workers with similar education and experience. Other factors include historically low home ownership, lower rates of savings, less participation in the stock market and less generational wealth passed down from family members among people of color. 

According to a report by the Employee Benefit Research Institute, pre-COVID, families with Black or Hispanic heads of household had much higher debt-to-asset ratios compared to those households headed by non-Hispanic white people. Families with minority heads were more likely to be saddled with debt payments that represented more than 40 percent of their income. And that money owed was more often the result of consumer debt (such as credit cards or student loans) rather than housing debt (mortgages or home equity loans). That’s bad news, because families with mortgages build wealth through homeownership; consumer debt is a “sunk cost” with no future pay-off, and usually at higher rates of interest. 

Depression and Desperation

Debt represents more than a number on the wrong side of a financial ledger. Debt can negatively affect mental health at midlife and beyond. One survey of older adults in Miami-Dade County, FL, found more symptoms of depression, anxiety and anger among older adults who reported excessive levels of debt.

“Debtor status is more consistently associated with mental health than any other single traditional indicator of socioeconomic status,” the report said.

A National Council on Aging survey found that older adults often make tradeoffs to save money, such as foregoing needed home or auto repairs (23 percent), cutting pills to save money on medications (15 percent) or skipping meals or medical appointments (almost 14 percent). 

If that isn’t enough, an older person in debt may be harassed by debt collectors. Some may find their cars repossessed or end up evicted from an apartment because they can’t pay the rent.  

Tackling the Problem

Borrowing money is just one part of the problem. The other side of the coin is not saving enough and not having the financial literacy to know better. 

Most Americans no longer receive pensions from their employers and must rely on 401(k)s or other retirement savings plans. Hamrick of Bankrate.com says few Americans understand how much money they need to fund their retirement, especially in light of longer lifespans and growing costs of housing and health care. In some cases, debt becomes the only way to make ends meet. 

“As a society, we don’t do an adequate job of teaching financial literacy,” he said. “The onus to put money aside has been shifted to individuals, and it’s difficult to compel individuals to save.” 

Similarly, the TIAA study noted that many older adults nearing retirement age don’t understand basics about finance, such as how debt can quickly double on money borrowed at high rates of interest. Trawinski of AARP added that, as people age, they’re more likely to lose a spouse to death, but many don’t plan for living without the spouse’s earnings. 

A debt-consolidation loan can help, provided you don’t just revert to credit-card spending afterward.

For older adults in debt, experts suggest a traditional remedy: making a budget and sticking to it. They advise taking care of the basics first—rent, utilities, food, drugs and medical care—and then looking for ways to keep those costs as low as possible, and to save money for unexpected expenses. 

“I advise people to try to build up a savings of at least a few hundred dollars,” said Burkham of the Elder Financial Safety Center, “so they’ll be ready for those nonregular expenses that people end up putting on a credit card,” such as car repairs. To help keep monthly expenses down, she helps low-income adults apply for government assistance programs that help with expenses like food, transportation, Medicare premiums and prescription drugs. 

Credit counseling could help some people. Debt-management companies can assist in creating a manageable repayment plan. These services are not free, however, and Burkham advises choosing one that’s affiliated with the National Foundation for Credit Counseling, not a for-profit debt-settlement company that may charge higher fees. 

Debt-consolidation loans might be an option for older adults with a steady income and the discipline to not fall back into credit-card spending. Home refinancing or reverse mortgages may be good options in some cases, but older adults should seek advice from a trusted expert before proceeding. 

Working Longer

For most older Americans, debt means they will have to work longer and postpone retirement. That’s the fate facing Bonnie Jones (not her real name), 62. She planned to retire at age 60, but she’s still saddled with about $10,000 in credit-card debt, plus a mortgage. That’s whittled down from the six figures in debt she inherited from a divorce 10 years ago. She’ll need to work another three to five years before retiring. 

“I’ve been very focused on paying down the debt, and I just feel lucky that I’ve been able to earn a good salary,” she said. 

Financial experts note that not all debt among older adults is necessarily problematic. Some debts, like mortgages at record-low interest rates, may make sense, according to the Center for Retirement Research at Boston College.

“Given longer life expectancies and extended labor force participation rates of older workers, and improving health status, households may optimally choose to maintain mortgage debt later in life,” one report notes.

Debt can also serve as a positive source of motivation that keeps older adults engaged in the workforce. Sarah Smith is still in debt but also feels she’s just hitting her stride professionally. She started a successful legal referral business just a few years ago and feels more confident than ever about her money situation. 

“I have more money in the bank now than ever, a large amount of equity in my home, a growing business and an extremely positive outlook,” she said. “Had I not hit rock bottom, I might not have created such a massive success.”

 

Climate Change Endangers Many Older Adults

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In 2007, Larry Howe watched a documentary called The Great Global Warming Swindle, which denied the threat of climate change. Convinced, he put the issue out of his mind. 

But that changed a few years later when Howe’s first grandchild was born. A retired engineer, Howe, 64, dug deeper into the science. Now he’s active with the Citizens’ Climate Lobby and talks to local groups, like the Rotary Club and Kiwanis, in Plano, TX, where he lives. He’s often met with skepticism—especially among people in his own age group. 

“Most don’t think they’ll be negatively impacted themselves,” he said. “They may agree that climate change is a serious problem but think ‘I won’t be around for it. It’ll get worse, but after I’m gone.’” 

If anybody should be concerned about the issue, it would seem to be older people, who stand to suffer more from climate-change-related problems—from weather disasters to air pollution. And many, like Howe, do grow more concerned about the future when grandchildren arrive. Yet many older adults remain unprepared for disasters in their own homes and communities, and studies suggest elders are less concerned about climate change than their younger counterparts.

So why the disconnect? 

Climate Disasters and Later Life

Climate change is triggering more frequent and more disastrous weather events, and older adults stand to suffer the most. Nearly half of those who died in 2005 during Hurricane Katrina were 75 or older. In 2012, when Hurricane Sandy hit New York and New Jersey, almost half of those who died were over age 65.

“Older adults are more vulnerable and experience more casualties after a natural disaster, compared to other age groups,” according to a study from the American Red Cross Scientific Advisory Council and the American Academy of Nursing. The study cited the likelihood that older adults will have chronic conditions and rely on medications, and will be dependent on assistive devices (like walkers or eyeglasses) and support from caregivers. Older people are also more likely to live alone, leaving them even more vulnerable. Those with mobility limitations are at greater risk, because it’s more difficult to get out of harm’s way. 

From 2015 to 2019, the United States saw at least 10 massive, climate-related disaster events each year, with each incurring a loss of $1 billion or more—the longest streak since record keeping began in 1980. In 2020, as of October 7, the United States was affected by 16 climate-related disasters with losses per event exceeding $1 billion: one drought, 11 severe storms, three hurricanes and one wildfire. 

“As we respond to disasters, we see the heartbreak of … communities dealing with the new realities of more intense storms, heavier rainfall, higher temperatures, stronger hurricanes and historic wildfires,” the Red Cross said in a 2019 statement on climate change. 

At the same time, older people are less likely than others to be prepared in the event of a major disaster. One 2014 survey found that two-thirds of adults 50 or older had no emergency plan, had never participated in any disaster preparedness educational program and were not aware of the availability of relevant resources. More than a third of respondents lacked a basic supply of food, water or medical supplies in case of emergency.  

Chronic Problems Made Worse

Older people often suffer from chronic health problems that can be exacerbated by climate change. Global warming leads to longer allergy seasons and more air pollution, affecting people with allergies, asthma and other lung conditions. As heat waves grow more and more extreme, older people stand to suffer more, and need to stay in more, especially those who retired to sunbelt states like Arizona. Some scientists speculate that climate change might also mean more risk from new infectious diseases—such as COVID-19—and might make people who live with polluted air more vulnerable to them.

Climate change also affects the costs of living. Energy expenditures to keep a home air conditioned go up as the temperatures rise. Home insurance rates skyrocket in areas subject to disasters like wildfires, flooding and hurricanes; in some cases, homeowners can’t even get insurance.

“So, you have increasing costs at a time when your income is fixed,” said Howe. “Age is like a threat multiplier when it comes to climate change.” 

Attitudes toward Climate Change

But while there’s a consensus among scientific, disaster-response and medical experts that climate change disproportionately threatens the health and safety of older adults, that’s not reflected in the attitudes of this age group. Older people seem even less aware than their younger counterparts of the threats they face.

Michael “Mick” Smyer has researched older adults’ attitudes toward climate change. He is a gerontologist, professor emeritus of psychology at Bucknell University and the founder and CEO of Growing Greener: Climate Action for a Warming World, an organization that promotes education related to climate change. 

While concern and awareness are increasing among people of all ages, there are some age differences. Smyer points to research and analysis from the Yale Program on Climate Change Communication. When asked, “How worried are you about global warming?,” 72 percent of younger people (ages 18-39) reported they were “somewhat” or “very” worried. By contrast, only 61 percent of baby boomers (ages 56-74) and 56 percent of those 75 or older reported the same levels of concern.

The lack of awareness and disaster preparation among older adults might relate to human nature—our capacity to dismiss danger when it’s not imminent. When asked, “How much do you think global warming will harm you personally?,” the age differences narrowed, with 44 percent of younger people responding “a moderate amount” or “a great deal,” compared to 41 percent of boomers and 39 percent of the oldest respondents. 

“That’s not a big difference,” Smyer said. “Can we find older adults who are members of the climate change denial club? Absolutely. Look at the ranking, senior, US senators. But can you generalize to all older adults? No.” 

Natural disasters make the news, but climate change itself gets less than one percent of airtime.

However, Smyer thinks there may be age differences in the way that older people prepare for disasters. Smyer, 70, was born and raised in New Orleans; Hurricane Katrina was the impetus that spurred his interest in climate change. He thinks more older adults died in Katrina, in part, because they’d lived through many hurricanes before and chose not to evacuate. Most were able to weather the hurricane itself—but not the flooding and prolonged disaster that followed when the levees broke. 

“Older adults thought they knew how to survive hurricanes,” he said. “And in a sense, they did. They were the ones who had axes in their attics, to chop their way through the roof to survive a flood. But many thought, ‘I’ve learned from previous, similar disasters and I can generalize to this situation.’ Except the conditions changed, and that’s what people don’t appreciate.” 

Smyer attributes the disconnect between awareness and action to what he calls society’s “climate silence habit.” Natural disasters make the news, but the bigger and longer-term cause—climate change—tends to fall to the background.

The 24-hour news cycle saturates viewers with news of weather events, but climate change gets very little airtime. Media Matters, a US media watchdog, calculated that only 0.3 percent (55 of 16,000 total minutes) of evening news airtime on the major TV networks (ABC, CBS and NBC) was dedicated to climate change in 2018. (That’s compared to 28 percent of news minutes dedicated to President Trump.) 

Some efforts for change are underway. Until recently, TV meteorologists traditionally avoided discussing climate change on the air, wishing to avoid appearing too political. Now many are bringing up the issue regularly, and even talking about possible ways to tackle it, according to a panel of meteorologists and policy experts convened at the 2020 meeting of the American Meteorological Society. 

“Broadcasters have an unusually good platform from which to engage,” said Ed Maibac, the director of the Center for Climate Change Communication at George Mason University. He noted that weather casters telling local stories about climate change have increased more than 50-fold over the last eight years.

Making the Message Stick

Rick Lent, 72, didn’t think much about climate change until a conversation with his college-age granddaughter two years ago. 

“Please tell me there’s something to be hopeful about in the future environment I’m living into,” she said. “Because I’m really scared.” 

That spurred Lent to activism through the Boston chapter of Elder Climate Action. He shares the conversation he had with his granddaughter when he speaks to groups of older adults at senior centers and community centers. Often, he has to hold back tears. 

“I have to watch my emotions when I tell that story,” he said. “That really personalizes it.” 

Smyer thinks that’s key. “The best way to reach older adults is through family members,” he said. He created a deck of climate-change cards to encourage young people—from elementary–aged kids to college students—to start the conversation. 

Their attitude [to climate change] is, “I’m not going to be around to fight that battle, so what can I do?”

— Rick Lent 

“What’s really clear to me is that older adults are not just potential victims but also potential leaders of climate action,” Smyer said. 

Lent says he sees two kinds of responses among older adults when he talks about climate change. 

“Well educated, middle- or upper-middle-class people don’t seem to be paying much attention,” he said. “I can’t say why except that they did what they were supposed to do —raised families, put money in their 401K—and now they’re retired and enjoying life. Their attitude is, ‘I’m not going to be around to fight that battle, so what can I do?’” 

He says it’s even more difficult to engage low-income people of color. 

“Those are the people most impacted by climate change and who have the fewest resources to deal with it,” he said. “If you can’t afford to put in air conditioning in your home, you’re not thinking about working to improve local air quality.”

Where Lent lives in Massachusetts, the biggest threat from climate change is the increasing number of severe heat waves, which affect older people most directly.

“It’s a problem, but then people forget and move on,” he said. 

Separating Science and Politics 

Politics is a big part of what informs attitudes toward climate change, Smyer said, and older adults are more likely to lean conservative; that may serve to reinforce their skepticism. Research shows that those who identify as left-leaning tend to express more concern about climate change and want more action to reduce its effects. Conservative older adults also tend to express significantly less concern than their Generation Z or millennial Republican counterparts, according to a Pew Research Center survey.

Howe, who is a conservative Republican, hopes science, not politics, can inform older adults’ views on the issue. He worries climate change has become politicized in a way that tends to make people of all ages resistant to scientific facts, noting the growing distrust in science he sees in response to the COVID-19 pandemic. But he’s also hopeful that education can help change some minds. 

“When I talk to groups, I try to address skeptics in the audience,” he said. “I try to get people to think that this isn’t just a political, polarizing issue. I share my personal journey. I thought fixing climate change meant killing the economy. It doesn’t have to. There are a lot of ways to solve it.” 

The Doctor Is In (Virtually)

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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.”

Will Lifelong Learning Change the Way We Age?

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Six years ago, Laura Rich signed up for a continuing education class in Chinese art history and archaeology at Stanford University. Her children were grown and she was wrapping up a full-time stint on the local school board. 

“Most of my life, I thought history was boring, but a trip to Shanghai sparked my interest,” said Rich, 58, of Menlo Park, CA. “And I felt like my mind was stagnating a little.” 

The class completely changed her life: she is now an archaeologist. Before the pandemic, she traveled to Europe twice a year for months-long digs in Italy and England. She has continued to educate herself through other classes at Stanford, lectures, conferences and online courses. As she dug deeper into her subject, she discovered she could tackle dense books that would’ve seemed impenetrable before. (“It’s like my brain turned back on,” she said.) Recently, she was elected vice president for outreach and education for the Archaeological Institute of America.   

“If you had told me 10 years ago that I’d be doing archaeology full time, I would’ve fallen over laughing,” she said. “Yet I absolutely love it.” 

Learning as Reinvention 

Rich’s story is dramatic, but one that Ken Dychtwald believes will become more common in the coming years. He lists “more learning” as one of the key ways life will change for older adults in the years ahead, in his new book, What Retirees Want: A Holistic View of Life’s Third Age (2020), which he co-wrote with Robert Morison..

“Lifelong learning may be the most important ingredient in determining the way people age,” said Dychtwald, who is CEO of Age Wave, a company that conducts research on aging populations. “If you’re living in a world that’s moving along very slowly, you go to high school and college, and that education lasts you for life. That world is long gone. In the future, there will be more learning and more of the personal development, fulfilment and untapping of potential that goes with it.” 

Many people associate “lifelong learning” with enrichment classes that cater to the interests of retired people—such as a course in photography or gardening. But today, older adults can choose from a rapidly expanding menu of educational options that allow them to pursue hobbies, grow professionally or even embark on new careers.  

For example, the Bernard Osher Foundation’s Lifelong Learning Institutes, launched in 2002, support 124 programs, geared primarily to older adults, on university and college campuses across the country.

The Road Scholar program, formerly Elderhostel, offers thousands of “learning adventures” in 150 countries (before the current travel restrictions imposed by the pandemic). 

Some universities are adding innovative, full-time, residential programs for older adults. 

Massive open online courses (MOOCs) allow students of any age to learn about almost anything, on their own timelines, often for free. Emerging in popularity in 2012, MOOCs are offered by providers like Coursera, Khan Academy, edX and FutureLearn.  

While college campuses have offered continuing education classes for decades, Dychtwald expects that will explode after the pandemic. 

“Older learners enjoy being in classrooms with people of all ages,” he said. “After we get this virus in the rearview, I think you will see a surge in campuses—at churches, community centers, senior centers, summer camps, museums—that become learning environments for people in later years.” 

Some universities are even adding innovative, full-time, residential programs for older adults who are starting second careers or looking to move from the profit to the nonprofit world, according to Mark Silverman, CEO of Amava.com, an online platform connecting older adults to online learning, jobs and volunteer opportunities. 

He cites the Stanford Distinguished Careers Institute as an example. The Institute brings midlife students to Stanford to attend classes with undergraduate and graduate students and to participate in campus life, with the goal of enabling individuals in midlife to renew their purpose, build a new community and enhance their physical, emotional and spiritual health. 

Silverman believes such programs are the natural outgrowth of people living longer.

“Many people want to continue to work after they reach retirement age, and money is often not the main motivator,” he said. “Now they have this opportunity to rethink everything. They don’t need to limit their opportunities based only on the experiences they had in the past. You can still develop new skills at this age.”

Learning for Employability 

For those still working, lifelong learning is a way to stay relevant. Judy Brown, 60, of Dallas, TX, worked in marketing jobs for most of her career. But when she took a new job several years ago, she needed to upgrade her skills to help market the company’s products online. With help from a colleague, and the online platform Lynda.com, she taught herself digital skills like search engine optimization. 

“I was in a job I didn’t know how to do; Lynda.com saved my life,” said Brown, who later parlayed her new skills into another, higher-paying job. 

Working older adults like Brown have more options now, because education has become more consumer-friendly and modularized in recent years, said Bradley Staats, associate professor of operations at the University of North Carolina’s Kenan-Flagler Business School and author of Never Stop Learning: Stay Relevant, Reinvent Yourself, and Thrive (2018).  

While a young person may opt for a degree program’s broad education and credentialing, someone in midlife likely needs training in specific skills. Higher education institutions are serving the latter group with more specialized online courses and certificate programs. 

“Universities are breaking up that education into pieces,” Staats said. “If you don’t want to spend two years full time, earning an MBA, maybe you take a one-year certificate program in data analytics online instead.” 

Bethany Ross, public services librarian at the Plano Public Library in Plano, TX, sees older adults profiting from those options. 

Expect COVID-19 to further shake up the online learning space and make it more relevant.

“I helped one older woman who came into the library at night to learn Excel, because she had started a new job and her skills were rusty,” she said. “Another taught herself Canva [a website design platform] to launch a small business selling socks on eBay.”  

Ross, 50, turned to Lynda.com to learn PhotoShop and refine her skills in Excel—two software platforms she uses for her job that weren’t taught in her master’s degree program in library science. 

Ross thinks COVID-19 is spurring older adults to become more adept with online platforms. When the pandemic closed the library’s buildings, the staff moved a book club, which normally met in person, to Zoom. 

“We worried that our older members wouldn’t be able to join us online, but most of them found a way to join us,” she said.   

Expect COVID-19 to further shake up the online learning space and make it more relevant, added Fred DiUlus, 78, founder of Global Academy, which helps universities launch online programs.  

“When Harvard said that existing students would be taught the same courses, all online, this fall, without reducing the cost of tuition, that dispelled some of the prejudice against online learning,” he said. 

Joys of Learning

Paul Irving, a former lawyer in Santa Monica, CA, who chairs the Milken Institute Center for the Future of Aging, thinks everyone should return to school at some point later in life. 

“There’s something magic about being on campus,” he said. “It starts with feeding intellectual curiosity, challenging oneself, and realizing the joy of learning. And returning to school can be a huge confidence builder—confidence both in what you know and in how much you learn.” 

Lifelong learning addresses many challenges related to an aging population. Researchers point to a “sense of purpose” as a key ingredient of successful aging and even longevity. One study by Age Wave and Edward Jones identified “purpose” as one of four pillars of successful retirement (along with health, finances and social connections). 

Purpose, the study said, includes giving back to the community, enjoying time with family, as well as “trying new things, developing new abilities and meeting personal goals—intellectual, artistic, athletic.” In other words, learning. In that same study, 95 percent of retirees polled agreed that “It’s important to keep learning and growing at every age.”  

More than 50 colleges and universities around the world are collaborating as they look for ways to become more welcoming to older adults.

Just as physical exercise keeps the body functioning and healthy, experts believe that learning exercises the brain in a way that helps keep it healthy.  One study showed that acquiring a complex new skill—like digital photography or quilting—led to improvement in memory; another suggested that learning a second language, even later in life, may slow age-related cognitive decline.

“Engaging in learning helps protect our brains from atrophy, and when we’re learning, we are more likely to express greater happiness and greater satisfaction overall, as a result of staying engaged in that way,” said Staats. 

Another benefit of learning: social connections. Strong social connections have been linked with physical and mental health for older adults. Taking a class can boost social skills and self-confidence. 

“I have a whole new set of friends who I would not necessarily have connected with before,” said Laura Rich, the archaeologist. “I’ve lived in this town for decades and I knew many people, but this new interest has brought me together with people from different worlds and lifestyles that I would never have met without pursuing something new and opening myself up to something new.” 

Age Diversity on Campus

These new options in learning are opening new opportunities for reinvention, continuing participation in the workforce and social engagement. But some older adults face obstacles. 

Many, especially those 75 and older, aren’t tech savvy and don’t have access to smartphones, computers or Wi-Fi. Those with limited mobility can’t always attend in-person classes. And older adults often don’t feel comfortable in traditional classes at universities, where the student populations generally remain age segregated. 

Some universities are looking to change that, by pursuing ways to include older people as part of their commitments to welcoming people of all backgrounds. Bringing more older adults to campus could also help keep classrooms filled and tuition dollars flowing. 

More than 50 colleges and universities around the world have joined Age-Friendly University, a global network founded in 2012 at Dublin City University to collaborate on ways to become more welcoming to older adults. Washington University in St. Louis, MO, joined the network in 2018, with a stated vision that “Later life will be viewed as a time of active engagement, learning, and purpose, as opposed to current perceptions of stepping back and diminishing relevance.” While still in its infancy, the Washington University program aims to add new courses, certificate programs, workshops and events tailored to the needs and interests of older adult learners. 

Bringing older adults on campus, too, could enable institutions of higher learning to participate more actively in shaping a society that includes a growing segment of older adults. Efforts to address issues related to population aging will be inhibited if students, classrooms and research training remain age-segregated, according to a study published in the Gerontologist, “Making the Case for Age Diversity on Campus.” 

Irving, of the Milken Institute, says that’s key. Encouraging more learning among adults won’t just help individuals age successfully; it will enable societies with large, aging populations to thrive. 

“Wise and knowledgeable populations will distinguish countries and societies in the decades to come,” he predicts. “Those countries that figure out ways to reeducate, reskill and continue to challenge and engage their older populations are the countries that will succeed.” 

Older and Wiser—but Dizzier

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Carol Kuhlman vividly remembers a weekend trip with friends about two years ago—because that’s when she started feeling dizzy. The lightheaded, unsteady sensation came on gradually and quickly got worse. 

“It was very uncomfortable,” said Kuhlman, 66. “I had to hold onto things just to keep from falling. By Monday I was so dizzy, I couldn’t go to work.”

Her physician diagnosed her with vertigo, noticing her rapid eye movements, recommended some exercises and prescribed meclizine, which didn’t prove a practical solution. 

“I took one tablet in the middle of the day and immediately slept for five hours,” she said. 

The doctor wrote a note to excuse Kuhlman from work—for just two days. She was still dizzy when she went back. Her colleagues immediately noticed something wasn’t right. “I was very unsteady on my feet and weaving all over the place,” she said. 

Many times, dizziness is caused by something benign, but it’s still emotionally and psychologically devastating. 

Kuhlman’s struggle wasn’t an atypical one for older adults. Dizziness can affect anyone, but older people are more prone—about 70 percent of adults over 65 have suffered from it in some form. And compared to younger people, dizziness in older adults tends to be more persistent, have more causes and be more incapacitating. 

“We see patients with dizziness very frequently, and we take it very seriously,” said Anupama Gangavati, MD, an assistant professor in internal medicine in the division of geriatric medicine at UT Southwestern Medical Center in Dallas. 

A patient’s experience of dizziness may come in a variety of forms: a feeling of lightheadedness or imbalance; a sensation of blacking out; or vertigo, the perception that the patient—or the surrounding environment—is spinning, tilting or moving. 

Several studies show that older people with a history of dizziness are at higher risk of falling, which is a leading cause of hospitalization and accidental death among those over age 65.

While many causes of dizziness turn out to be benign, the effects can be emotionally and psychologically devastating. Dizziness is disorienting and unnerving. Sudden bouts are frightening; chronic cases can be debilitating. 

“It’s a quality of life issue,” said Gangavati. “Dizziness can lead to a lot of psychological distress if you’re not able to control it. Patients should not let it go just because a physician has not addressed it successfully on the first try.”  

What Causes Dizziness?

Accurate diagnosis can be a challenge. Dizziness can stem from a range of issues, including problems affecting the inner ear, brain, eyes, nervous system, vascular system or heart, all of which are subject to aging-related changes, according to Kathleen Stross, PT, a neurological and vestibular therapist.

Many older adults take multiple medications; dizziness may be a side effect of one or the result of an interaction between drugs. Neurological conditions like Parkinson’s can cause dizziness. Even health issues that might seem unrelated—such as neuropathy (numbness or loss of feeling) in the feet—can cause a patient to feel unbalanced and dizzy. Stress, depression or a lack of exercise may also contribute, as can dehydration or hot weather conditions. 

Among older people, one of the most common causes of dizziness is dysfunction of the peripheral vestibular system—the inner ear and its pathways to the brain. This controls a person’s balance and spatial perception. Neurologists call the vestibular system “the sixth sense” and, just like other sensory functions, it changes as people age. 

“As we age, just as our vision changes and our hearing may be affected, the vestibular system ages as well and may not function as well as it did when we were younger,” said Stross.

Patients can help their medical providers to diagnose the cause more accurately by giving a clear description of their dizziness. Stross gives new patients a questionnaire to help pinpoint their experience—what it feels like, how often it occurs and what, if anything, seems to trigger it. 

“The way people describe it can really vary, so I ask patients to tell me how they feel without using the word ‘dizzy,’” said Stross. “For some, it’s a feeling of being lightheaded or off-balance. Some describe it as feeling ‘heavy headed’ or a sense of floating or pressure. Others say they feel as if they’re spinning or moving.”  

Steve Lavine, 65, of Plano, TX, began experiencing dizzy spells when standing up from a chair. They got progressively worse, to the point where he felt he might black out. Lavine checked his blood pressure and found it was low, almost dangerously so. After consulting with his physician, Lavine stopped the blood pressure medication he had been taking for more than six months with no problems. Lavine had since lost 15 pounds through diet and exercise. The medication was now overcorrecting and making his blood pressure too low, causing the dizzy spells. When he stopped the medicine, the problem disappeared in a few days.

A thorough medication review is absolutely important.

— Anupama Gangavati, MD

When a patient complains of dizziness, one of the first things Gangavati checks is the person’s list of medications. Blood pressure medications are common culprits, as are antidepressants, beta blockers, prostate medications and diuretics.   

“Medications are one of the most common contributors of lightheadedness or dizziness,” she said. “A thorough medication review is absolutely important.” 

Gangavati also performs an exam, reviews the patient’s medical history and asks about triggers—when the dizziness occurs and what seems to be causing it. 

Beyond drug side effects, Gangavati said she sees three common causes of dizziness among her older adult patients: benign paroxysmal position vertigo (BPPV), orthostatic hypotension and postprandial hypotension. 

BPPV occurs when tiny calcium particles (canaliths) clump up in canals of the inner ear, interfering with normal perception about head and body movements relative to gravity. Doctors diagnose the condition by observing patients’ eyes while they’re moving their heads. Patients with BPPV exhibit rapid, uncontrollable eye movements. The symptoms may be severe, making the patient feel as if the room is spinning, and may lead to nausea and vomiting. 

“BPPV tends to occur in episodic bouts of a few hours,” Gangavati said. “It’s triggered by head movement, and if you stop moving your head and keep it in one position, it subsides or goes away.” 

Orthostatic hypotension is a bout of dizziness or lightheadedness due to a lack of blood supply to the brain, typically triggered when a person stands from a sitting or lying position. Postprandial hypotension occurs when patients feel dizzy or faint after eating a meal, because their blood supply is geared to the stomach to digest the meal.

Trial and Error

Imani Calicutt, 65, of Dallas, sometimes experiences bouts of dizziness, and her doctor’s not sure why.

“Lately, it’s been constant,” she said. “It’s really limiting me because I can’t go very far without having to sit down.”

She’s working with her doctor (now via telemedicine due to the COVID-19 crisis) to determine the cause. Because Calicutt takes an array of medications for arthritis, diabetes, chronic pain and kidney disease, she’s expecting it may take some trial-and-error to find the cause.  

That’s not uncommon, Stross said. 

“In our experience, patients usually need to see three physicians before they get an answer,” said Stross. Because dizziness could relate to any number of areas of the body, finding the right specialist isn’t easy. 

After a visit to a primary care physician, the patient’s next step might be an appointment with an ENT (ear-nose-throat) specialist or a neurologist, or possibly a cardiologist (if vascular issues are suspected) or hematologist (if anemia is suspected). 

Brief moments of lightheadedness are probably not serious but do mention them to your doctor.

To treat dizziness, a physician may prescribe medications or dietary and behavioral modifications. That can include basic steps like ensuring the patient is drinking enough fluids and getting enough rest and exercise. 

For problems relating to the inner ear, including BPPV, vestibular rehabilitation therapy can be effective. Vestibular therapy ranges from simple exercises (a well-known one is the Epley maneuver, which involves positioning the head to help dislodge the tiny particles that cause BPPV) to physical therapy that helps the patient learn to compensate for imbalance and maintain physical activity. Vestibular therapy, when indicated, may provide immediate relief, or it may take some time to see results.

Gangavati added that many older people will experience brief moments of lightheadedness that likely don’t signal any serious problem. But she recommends at least mentioning it on the next visit to the doctor. “I think any dizziness should be discussed with your physician.” 

If acute dizziness occurs and is accompanied by other symptoms—like chest pain, difficulty walking or slurred speech—it could be a medical emergency, like a heart attack or stroke. In that case, Gangavati advises, head to the emergency room.  

Chronic Dizziness

Twelve years ago, as he walked out of the hospital after finishing his rounds, Tom Davis began to feel dizzy. 

“I’ve been dizzy ever since,” said Davis, 58, a physician in St. Louis, MO. Over the years, specialists have come up with different diagnoses: vestibular neuronitis, vestibulitis and Meniere’s disease, among others. None of the prescribed treatments fixed the problem permanently. Vestibular therapy made it worse. He considered surgery, which would destroy the nerve in the inner ear, but that would leave him deaf in one ear and offered no guarantees. At this point, instead of searching for a diagnosis, he’s focused on managing the symptoms as best he can. 

“It really doesn’t matter what’s causing it, because there’s no way to fix it,” he said. “You just have to work your way around that reality.” Regular exercise keeps him strong and helps reduce the risk of falls. On bad days, he takes a low-dose sedative and rests.

Unfortunately, like Davis, some people may have to contend with dizziness as a chronic or recurring issue. He says getting social support is important, especially for older people who might be tempted to isolate or become sedentary, for fear of falls. 

“If you have chronic dizziness, you’re not alone,” he said. “There are many groups on Facebook where you can get support from others.” 

Patients with chronic dizziness can also find helpful information and links to providers on the website for the Vestibular Disorders Association. Several other organizations offer support groups and other resources.   

Carol Kuhlman has been more fortunate. She did find some relief. She returned to work, still dizzy, a few days after her symptoms first appeared. She’s an administrative assistant at a medical school and, as luck would have it, an expert on vestibular disorders was visiting her department that day. 

Coworkers arranged for her to see the specialist, who diagnosed acute peripheral vestibulopathy (inflammation of the inner ear). He prescribed vestibular therapy, which helped reduce the dizziness and restored her sense of balance. Kuhlman still has flare-ups from time to time, but she’s found a way to manage them. Exercise and stress management seem to help.

“When it recurs, I go back to the balancing exercises, which help,” she said. “And when I have a flare-up, I just have to push through.” 

 

Patient Advocates: Pathfinders in the Complex World of Medicine

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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. 

 

Write Your Own Obituary

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When Susan deLarios’s mother passed away, she had to scramble to finish the obituary before the funeral. By contrast, when her father died a few years earlier, his obituary was already done—he had written it himself. Given how much easier that made life for her, deLarios said, “Now I tell people: you need to write your obit.” 

A growing number of people are doing just that: they’re crafting their own obituaries as a gift to their families and as a way of having the last say in summing up their lives. Some write them when death is imminent; others prepare them as an exercise in contemplating mortality. 

Whatever the motivation, writing your own obituary ensures the facts are correct, relieves your family of one of the more difficult tasks of the funeral arrangements and allows you to communicate key wishes, such as where friends and family should direct memorial donations.

Self-obits are part of a broader phenomenon: growing cultural acceptance of talking about death. The same “death positive” movement that has led people to gather in Death Cafes to talk about passing, or to read bestselling books like Atul Gawande’s Being Mortal (2015), is also encouraging people to prepare the last word on their own lives. 

While USA Today dubbed them “selfie obits,” self-obits are much more than narcissistic exercises, according to Frank Joseph, a rabbi serving four congregations in Texas. “A prewritten obit relieves a lot of stress for the family during a stressful time. And it ensures that the loved one is being remembered exactly for what they wanted to be remembered for.”

Having the Last Say

When journalist Ken Fuson passed away in early 2020, friends alerted his family that he’d likely written his own obituary. Fuson taught writing classes; his first assignment to students was to write their own obituaries. 

After cracking the passcode on Fuson’s computer, family members did indeed find an obituary written in Fuson’s distinctive, funny voice. The obit ticked off his many journalism awards, followed by a humorous crack: “No, he didn’t win a Pulitzer Prize, but he’s dead now, so get off his back.” Fuson’s son, Jesse, posted the obituary on Facebook—it was long and too costly to print in the Des Moines Register, where Fuson worked for years. The obit went viral. Major news outlets picked up the story. 

Don’t store your obit in a password-protected computer or a safe deposit box. 

“It was really awesome to read someone’s own thoughts on their life after they had died,” Jesse Fuson said. “You could see the humor shine through. It was just a great thing to be left with, not to mention the partial fame it created, which was hilarious in its own way. Dad would be rolling in his urn if he had known his obit was on Fox News.” 

Fuson’s story offers an important caveat: if you write your own obit, you must tell your family or friends that you did so and tell them how to access it. Don’t store it on a password-protected computer (unless you share that password) or in a safe deposit box, which may be sealed temporarily after death.

“Make sure you’ve told all of your children or other next of kin that you’ve done this,” advised Keely Gilham, a funeral director in Arlington, TX. “Make each of them a folder with all of your final wishes, including copies of the obit as well as other important docs, such as your will, preplanned funeral arrangements or life insurance policy.”

A Chance to Review

Fifteen years ago, Cindy Kyle sat down with a glass of wine and spent an evening completing an online form with her final wishes, including a section for her obituary. Although she was in her 40s at the time and in good health, it felt natural for a “dreadfully organized person” who keeps her affairs in order. She listed her family members and details of her schooling, work history, special interests and hobbies, and added words of gratitude for important people in her life.

Instead of being upsetting, she said, “I had a blast. It was a way of summarizing the joys and accomplishments of my life, to think about what’s important and what I want people to know about me.” 

Resources abound to help self-obit writers get started. ObitKit: A Guide to Celebrating Your Life (2009) by Susan Soper is a workbook for recording important facts and life events as well as end-of-life wishes. Legacy.com, an online publisher of obits, offers an extensive archive of articles on crafting an obituary, as well as a compilation of examples of auto-obits. Websites for end-of-life planning, such as Everplans.com, provide places to upload and store an obit (along with other key documents) as well as checklists of information to consider for inclusion. 

Most obituaries typically include basic information such as the deceased’s surviving family members, religious and organizational affiliations, career and other accomplishments, as well as details on the funeral. Checklists, templates and step-by-step guides abound online. But keep in mind that there’s nothing that dictates what a self-obit writer must include. (Consider the humorous, two-word self-obit of 85-year-old Douglas Legler: “Doug Died.”)

It’s not a resume. It’s a representation of how you lived.

— Alan Gelb

Writing your obituary can serve as a memento mori—practice for confronting your mortality and taking stock. For some, it spurs positive life corrections, said Joseph, the rabbi. He cited the example of Alfred Nobel, the inventor of dynamite. After reading his own obituary (published in error), which called him a “merchant of death,” Nobel bequeathed his fortune to institute the Nobel Prize. As he hoped, he’s now remembered for the Nobel Peace Prize, rather than for his invention. 

A life-review writing exercise benefits people at any age, said Alan Gelb, author of Having the Last Say, Capturing Your Legacy in One Small Story (2015.) After observing how high school students benefited from writing college application essays, he created prompts for similar writing exercises for older people, which he dubbed “Last Says.” 

To maximize readership and create an interesting tale, Gelb encourages writers of self-obits to look for a narrative arc and to lead off with a statement that captures their essence. 

“Don’t try to tell your entire life story or get hung up on having to cover everything,” he said. “It’s not a resume. It’s a representation of how you lived.” 

An obituary can be funny or serious, short or long, factual or more contemplative. Joan Calhoun’s in-laws wrote their own obits, which were published when they passed away just seven days apart. Her mother-in-law’s obit was short and sweet; her father-in-law’s was lengthy and full of details. Each reflected their respective personalities. 

“That was them,” Calhoun said. “That’s how they were. She was quiet; he was a storyteller who never met a stranger. I just think that [writing one’s obit] is a wonderful thing to do.”

Considering the Cost

In her self-written obituary, comic writer Jane Lotter quipped, “I’d tell a few jokes, but they charge for these listings by the column inch.” Generally, prewritten obituaries won’t save families money. For one thing, many funeral homes will prepare a basic obit (based on information the family provides) as part of the overall cost of the funeral package; others may charge a nominal fee. 

The biggest cost is publishing the obit, and often there’s sticker shock. Newspapers typically charge per word or per line; a short obituary can easily run $200-$600 in a major market paper, whereas a long one can cost upward of $1,000. A photo adds to the cost. 

Note that newspaper editors distinguish obituaries written by a reporter (typically for locally prominent people) from the paid write-ups provided by the deceased’s family or a funeral home. While newspapers publish reporter-written obituaries at no charge, families usually have no control over what’s included in the final story.  

Some newspapers and funeral homes post obituaries online for a nominal fee ($50-$100) regardless of length. If budgets are limited, Gilham advises families to publish a brief obit in the newspaper’s print edition, with basic facts and funeral arrangements, and a longer version online. Bottom line: keep in mind that a long obit could be costly. 

Taking Control

Toward the end of his life, Reid Coleman worried that family conflict would arise over the planning of his funeral and obituary, given one relative’s tendency toward intrusiveness. To pre-empt that, he wrote his own obituary and planned his funeral in detail. It worked—his wife, Kate Coleman, was able to execute his wishes and fend off potential meddling. 

However, Coleman trusted his wife to see things through on his behalf. If you don’t have a reliable next of kin who will follow your wishes, you should enlist legal advice if it’s imperative to have your self-obit published as is. Laws vary by state; in some states it may be possible to appoint an agent to handle funeral and burial details, including the obituary. 

Don’t include your obituary in your will, because it may not be discovered until it’s too late. Funerals (and the publication of an obituary) generally take place immediately after death and before an executor takes control of the deceased’s estate. 

But keep in mind that total control isn’t always a positive. Because most people don’t always see themselves as fully as others do, a self-written obit may be limited. 

That’s one slight regret that Kate Coleman has about her husband’s self-obit: he didn’t brag about himself enough. He didn’t share how he devoted the latter half of his career to reducing medical errors. The obit chronicled his career but failed to mention that he developed a hospital bracelet that uses scannable codes to prevent mistakes. 

“He was a ‘just the facts’ guy and the obit reflected that,” she said. “But I got cards from his colleagues talking about his accomplishments and how meaningful they were.” 

Looking back, deLarios often thinks of things she wishes she’d included in her mother’s obituary but overlooked due to lack of time. But she’s certain her father’s obit included everything important to him, including details about his military service and his involvement in the Masons. 

“That floored me,” she said. “I would’ve never thought of putting that in his obit. Reading his words after he was gone, and seeing what he considered was important, was very profound.”

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