What she mourns most, says Solange DeLaPaz, are the mundane pleasures and rituals of her once-active life. A weekly manicure at the corner nail salon. Saturday excursions to Macy’s shoe department.
“I miss going to Sunday brunch on Second Avenue with my friends,” she said. “I miss going to church.”
Though only 67, Ms. DeLaPaz retired early with chronic obstructive pulmonary disease and now struggles to leave her Manhattan apartment. She needs constant oxygen, and carrying even a portable oxygen unit troubles her breathing.
Climbing or descending the few steps from the elevators into her building’s lobby presents another obstacle. “I wouldn’t dare do that on my own,” she said.
About every three weeks, therefore, the home care aide who provides 12 hours of city-subsidized weekly assistance accompanies Ms. DeLaPaz outdoors. They walk to the corner and back, perhaps a six-minute expedition. Other outings are largely limited to medical appointments, with an escort from the social service agency Dorot.
Unlike some homebound older people, Ms. DeLaPaz doesn’t feel isolated, she said. Friends and relatives stop by; between a son’s and a grandson’s visits from Texas and California, she stays in touch online and by phone. A hairdresser and a priest make house calls. A volunteer helps with grocery shopping; a pharmacy delivers prescriptions.
Being homebound in rural areas can be harder and lonelier. Even for Ms. DeLaPaz, however, “being inside the house all the time is stifling. I’m confined.”
Almost two million people over age 65, or nearly 6 percent of those Americans (excluding nursing home residents), rarely or never leave their homes, researchers recently reported in JAMA Internal Medicine. The homebound far outnumber the 1.4 million residents of nursing homes.
Using data from the 2011 National Health and Aging Trends Study, the study authors defined as homebound those who in the past month had not left their homes at all or had gone out no more than once a week. The researchers categorized another six million people as “semi-homebound,” able to leave home only with difficulty or with another’s assistance.
Who are the homebound? Compared with other aging adults, “they’re older,” said Katherine Ornstein, an epidemiologist at the Icahn School of Medicine at Mount Sinai Hospital in New York and the study’s lead author. “They’re more likely to be female and less likely to be white; they’re lower income. They’re more likely to be non-English speakers and to be Medicaid beneficiaries.”
And, she added, “they’re sicker,” with higher rates of heart and lung disease, arthritis and stroke. Among the completely homebound, who haven’t left home in the past month, 80 percent have dementia; so do nearly 60 percent of those semi-homebound older adults who never go out alone.
Depression, too, is widespread, affecting a quarter to a third of the semi-homebound and almost 60 percent of the completely homebound. Researchers don’t yet know whether these people rarely go out because they are depressed or grow depressed because they have become homebound.
But it is clear that while physical and mental health play key roles, the difference between those stuck at home and those able to participate in life beyond their front doors also depends on their environments and on assistance.
Dr. Ornstein’s 79-year-old father in Queens, for example, lives alone and after several strokes, walks unsteadily. Jerry Ornstein could easily become homebound. Instead, “my father has two amazing home care attendants, so he’s out every day” visiting the park, his synagogue and the local library, Dr. Ornstein said. “He enjoys seeing people, watching the kids in the playground.”
Edward Sedlacek, on the other hand, hasn’t left home in about three months, he told me. At 87, he has difficulty standing and walking, but the bigger factor may be the 16 steps from his walk-up Manhattan apartment to the street. If he lived in an elevator building and used a motorized wheelchair, he might still be able to join friends for lunch at a nearby senior center.
“We really don’t know the extent to which assistive devices — canes, walkers, wheelchairs — or environmental modifications like hand rails and ramps can fill this gap,” said Vicki Freedman, an epidemiologist at the University of Michigan’s Institute for Social Research.
A study she helped conduct last year, using the same 2011 data to look at older adults’ “unmet needs,” turned up an interesting comparison: When the researchers controlled for demographic characteristics and health and function, people in assisted living facilities actually got outside more often than those in their own homes.
How stuck in their homes older adults became, in other words, depended not only on how ill or frail they were, but on where they were. In assisted living facilities, aides, outings, vans and single-floor designs probably promoted access to a broader world.
Geography matters, too. Among people over 80, more than three-quarters remain in their own homes, the Harvard University Joint Center for Housing Studies has reported, and those homes can reduce or reinforce their limitations.
In the Northeast, for example, more than 40 percent of homes have stairs and no bedroom and bathroom on the first floor. In the South, more than 80 percent of homes offer single-floor living.
Concerned about how the homebound get routine health care, and the costs that mount when they don’t, a small but growing number of geriatrics practices make house calls. In the Mount Sinai study, about 12 percent of those completely homebound received primary care at home.
But there is more to a satisfying life than seeing doctors. You have to wonder whether older adults’ preference for “aging in place” has inadvertently helped imprison them.
Aging in place, by the definition of the Centers for Disease Control and Prevention, is “the ability to live in one’s own home and community safely, independently and comfortably, regardless of age, income or ability level.”
In practice, however, older adults’ desire for familiar surroundings, and their fear of institutionalization and its financial burdens, have apparently led millions to fight to remain in homes they can rarely leave. Our national celebration of independence as a value may not help.
“They don’t have enough care,” Amy Murray of the Carter Burden Center for the Aging in New York said of her homebound clients. “But when we suggest other situations, they don’t want them.”
As Mr. Sedlacek’s case manager, she has arranged for Meals on Wheels and regular home visits from a nurse practitioner. She has suggested, and his nieces have also urged, that he hire home care.
He could afford help from aides, or a move into assisted living, “but for some reason, I’m resisting it,” he said. “I can still get around, more or less.” Mostly less.
To keep older people in their homes, as Medicaid and other programs increasingly try to do, represents a laudable goal but an inadequate one. Aging in place also requires a variety of supportive services; creating or expanding them involves money, time and many moving parts.
Remaining at home, however difficult or isolating that becomes, gives older people a sense of control that may prove illusory, Ms. Murray said. “They feel like they have their freedom even though they don’t, really.”
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