Often Alone, Not Eating: Older Adults Struggle With Malnutrition
Factors such as isolation, grief, age discrimination and expense can all play a part
"I found out she was putting water on her cereal," Mary Kunz says of her former next-door neighbor. Kunz, the 88-year-old mother of four daughters who lives with her husband in upstate New York, says that even though she'd prepare hot meals for her former neighbor, and friends from church would drop off food from time to time, "often, her cupboard was bare."
"She was too frightened to have Meals on Wheels, to have a stranger come. So it was a bad situation," Kunz says. One day, her former neighbor's church friends told her she was going to the hairdresser — and instead, they took her to an assisted living facility.
Eventually, it "worked out," Kunz says. "She needed a lot of help. And luckily, she had the friends to do it."
"Once older adults lose weight, they have a hard time putting weight back on."
Kunz has faced her own struggles with malnutrition: she has short bowel syndrome. A few years ago, after a major obstruction, her bowel ruptured. "I went into shock," she says. "When I had the emergency surgery, it was due to adhesions. I lost most of the small bowel. I'm told I have two or three feet left."
Since her surgery, Kunz has lost a bit of weight. "I don't look horribly thin, but I'm thin," she adds. "And it's very difficult for me to gain weight."
Rose Ann diMaria-Ghalili, PhD, says this is a common issue. "Once older adults lose weight, they have a hard time putting the weight back on," she says. Now a professor and Senior Associate Dean for Research at Drexel University's College of Nursing and Health Professions, she first developed an interest in malnutrition while working as a nutrition support nurse at Jacobi Medical Center in the Bronx from 1989 to 1993.
"It was really alarming, the rates of malnutrition," she remembers. She observed a big disparity between how long it took for an older adult to recover and go home versus a younger person.
"I was concerned," she says.
She began focusing her research on malnutrition in older adults, publishing one of the first papers on the topic in 2005 in The American Journal of Nursing. More recent work has attempted to quantify the prevalence of malnutrition among older adults who don't live in nursing homes.
How common is it? 1 in 4 people were at risk, and 6% were malnourished. Those in residential care were over twice as likely to be malnourished (12% vs 5%).
Isolation, Anxiety and Grief
DiMaria-Ghalili says risk factors for malnutrition among older adults include depression, anxiety, social anxiety, and the loss of a loved one. Living alone is also a risk factor.
"Your world gets so much smaller. There's no one to go out to eat with."
Kunz has seen the toll of isolation first hand. "You're losing all your friends. Your world gets so much smaller. There's no one to go out to eat with," she says.
One of her friends was a 96-year-old woman who lived by herself. "Her house was a hovel. You had to make a path to walk through," she says.
In her younger days, her friend was a good cook, but as she got older, she just heated things up. "She resorted to using paper plates, but she never discarded the paper plates. Everything was ... such a mess. How do you eat healthy there? It's just that they're not capable any more, living by themselves."
Many older men lack cooking skills. Some have never cooked before. When their wives die, it leaves men adrift, with little knowledge of how to feed themselves.
Access to food is also a challenge. Many older adults don't drive, "and have never used a computer," Kunz says. "[Some] older people don't even have a computer and don't know how to get food delivered," she adds. "And some are not willing to reach out for help."
Effects on Caretakers
Becoming a caretaker comes with its own risks.
"When you're there as the caretaker, there's an overwhelming fatigue, with no time to shop and prepare healthy meals," Kunz says. She took care of her sister for 72 days, staying at the hospital from 7 a.m. to 7 p.m. After that, she would care for her brother, who was disabled. "You think, Can you eat? Of course you're not eating anything good," she says.
Another friend lost an estimated 30 or 40 pounds when her husband was sick. She served as his caretaker. "My friend said she was just too worried and too nervous to eat," Kunz remembers.
"Now she has no interest in cooking for herself, and she's too sad to eat," she adds. "She went from being a little bit heavy to being just so frail."
Frailty — like dementia and fall risk, among others — is a complex condition (a "geriatric syndrome") that is fueled by malnutrition, research shows. With weight loss comes loss of muscle, which becomes a foundation for frailty. And frailty — characterized by exhaustion, low physical activity level, low strength, slow gait, and unintentional weight loss — also impacts malnutrition, though they are separate conditions. Clinical guidance and treatment guidelines are still evolving.
Money and Co-Morbid Conditions
Cost is also a barrier. Food can be expensive.
"Older adults are oftentimes on a fixed income, and they have to make some decisions about paying for medication or buying food," DiMaria-Ghalili says. "They may buy foods that don't have high-quality protein because they may not have enough money."
There are also some conditions — such as diabetes, hypertension and heart disease — that can impact how people shop for food, and limit the types of food that they can eat. Even tooth pain can prevent someone from getting the nutrition they need.
"I know of two women who had no teeth, and they just gummed all their food. So you're not eating good food," Kunz says.
"And it can be challenging to feed individuals with dementia," DiMaria-Ghalili adds.
"They forget if they've eaten, or what they ate."
"In the case of severe Alzheimer's — and I've seen this with a couple of people — they are physically unable to eat. They don't remember how to eat. They have to be reminded to swallow," Kunz says.
And sometimes, someone might simply be too forgetful to handle their nutritional needs. "They forget if they've eaten, or what they ate," Kunz says. "It also may be too dangerous for them to cook for themselves." One of her friend's aunts would leave food cooking on the stove unattended. Soon enough, she couldn't cook for herself anymore.
Gut Issues and Age Discrimination
"I try not to let it stop me from doing anything I want to do. That's how I live with it," says Katie Marschilok, a 70-year-old retired nurse and veteran who lives with her husband in Troy, New York. Her malnutrition experience has taken her all over the country, to specialty doctors at the Cleveland Clinic, Mass General, Medstar Georgetown, Mt. Sinai, Stanford University, and Temple University.
It all started about eight years ago, when she developed H. pylori ulcers. "After that, my GI tract was never the same," she says. She started seeing a gastrointestinal doctor, and she developed a few food intolerances. She lost 50 pounds in four months.
"My window of what I would eat had been anything and everything. It narrowed down gradually over time until it was down to next to nothing," she says. She began needing nutrition support, starting with enteral feeding. "My doctor said I survived on it, but I didn't really thrive. I didn't really bounce back the way you expect someone to."
Marschilok ate that way for nine months and then, her intestine perforated. At that point, she switched to IV nutrition, or parenteral nutrition. She's been on that since 2019. Up until this spring, she ran her nutrition in the morning, plugging in a line into a Hickman catheter port in her chest, via a backpack that she wore all day long. On unusually hot days, she ran the nutrition faster, with hydration. But it's not painful. "I don't feel a thing," she says.
"Parenteral nutrition has its wonderful blessings, in that it keeps somebody like me who can't eat or drink normally alive and healthy and able to live a normal life (as long as I take care of myself), but it also has its dangers," she says. She's had three central line infections. "When that happens, it can be very dangerous," she says. "Infection spreads and gets rampant pretty fast."
But she says she doesn't really have a choice — she tried nutrition directly into her intestinal tract, and it didn't work long-term.
"I think some people get overwhelmed."
She was told over and over again that she was too old for a small intestine transplant — but everything changed this spring, when she finally found a doctor at the University of Pittsburgh Medical Center who saw her case in a new way. She had a three-part surgery: a pyloroplasty, with two other components. It's potentially given her a new future.
"It is amazing, life-changing, life-altering," she says.
Depending on the outcome, she says, she could transition away from not needing the IV nutrition as much (perhaps every other day), or, if she gets lucky, not needing it at all. At this point, she's up to 500 calories a day. Now she's eating things like yogurt and pudding.
'You Don't Have to Go It Alone'
Marschilok has a few words of advice for others who may find themselves in her situation. First, keep records of your symptoms. Document everything. Take photos, and date the photos, with an accompanying description of how you felt that day.
"Make this nutrition support work for you the best you can," she says. "And if you don't know how to do that, contact ASPEN (the American Society for Parenteral and Enteral Nutrition), contact the Oley Foundation, contact somebody who can help you. You don't have to go it alone."
"It is so important to be your own advocate or to have a family member help," Kunz adds.
"I think some people get overwhelmed," Marschilok says. "Or they're feeling sick, with a lack of energy, and it's hard to fight the fight. But there's help out there to fight the fight."
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