Better Than A Nursing Home?

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MICHELLE LIVITIN FOR TIME

Here comes the latest horror story from the ragged frontier of care for the elderly. Like a lot of aging baby boomers struggling with ailing parents, Peter Levang fretted 2 1/2 years ago when his mother Dolores, already plagued with mild dementia, became incontinent. He considered a nursing home--the classic option for those too sick to live alone and too needy to live with family. It seemed a dreary choice. Then Peter heard about a center just 15 minutes from his house. It was an assisted-living facility, part of a new way to live--and die--with dignity and freedom. These facilities, designed to help residents with daily tasks but not to provide skilled medical care (you still need a nursing home for that), are free of many of the safety and sanitary regulations that make nursing homes seem so much like mortuaries. By providing warm, inviting decor and individually tailored care, these centers can take much of the pain out of the awful decision to move a loved one from her home.

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So Peter brought his mother to Alterra Clare Bridge in Eagan, Minn. Designed for people with memory difficulties, the center promised to allow Dolores, then 78, to live independently while it provided the extra support she needed. Staff members trained in memory impairment would help her eat and bathe; a "life-enrichment coordinator" would keep her active. The facility was stunning: from the outside, it looked more like a resort than a hospital. Inside, residents could gather in the "town square," with its beauty salon and ice-cream parlor, or relax by the fire in the living room, or skim through stacks of old National Geographic magazines. "You walk in and say, 'This is a place I would love to have my parent,'" says Peter.

Now he wishes he had looked a little more closely. Shortly after Dolores moved into the Eagan center in March 1999, at a cost of $3,450 a month, Peter's wife Bonnie, who visited regularly, noticed that Dolores' only "life enrichment" was watching television in her rocking chair. Nor was Dolores receiving the help she needed in visiting the toilet. On several visits, Bonnie found her mother-in-law's feces smeared on the bedroom floor and walls, in Dolores' hair, on her face, on her toothbrush. Then Dolores began to fuss incessantly with her feet. The Levangs thought they had arranged, through the center, for an outside service called Happy Feet to provide pedicures. But Happy Feet never received the contract. (The center's operator, Alterra, based in Milwaukee, Wis., insists that its manager did fax it in.) For eight months no one cut Dolores' nails, which grew so long that they curled over the tops of her toes and began to dig into the skin underneath.

The Levangs then began to hear alarming stories from other residents' families. Tina Sowells' grandmother Freda Trimble, then 89, had to be hospitalized after an anxiety attack because for several days she hadn't been given her necessary dose of Xanax. Fran Firth complained that her mother, Grace, then 74, had been left lying in her feces for several hours until her skin peeled; the company says her diaper was changed regularly. "We could not have been more disappointed," says Bonnie Levang.

Fueled by Wall Street speculation and the rapidly aging U.S. population, assisted-living residences in the past few years have popped up in nearly every suburb and city. Today there are at least 10,000 facilities, 90% of which have been built in the past decade, according to the American Seniors Housing Association. They house nearly 800,000 elderly Americans. But the boom has been accompanied by widespread allegations of substandard care, neglect and even preventable death. Year after year, Washington politicians take aim at problems in nursing homes, often proposing scores of new guidelines for an industry that is already heavily regulated. Yet Congress has thus far largely ignored assisted living, which receives no federal oversight whatsoever.

Last week a special government investigation disclosed that the number of nursing homes cited for abuse violations has doubled in just the past five years, prompting Congressman Henry Waxman, a California Democrat, to propose tougher staffing and disclosure rules. These may indeed be necessary. But the soon-to-be-released findings of the first national study of assisted living suggest that staffing problems and neglect in these facilities may be just as acute as in nursing homes. The Department of Health and Human Services (HHS) report will show that 32% of assisted-living residents (who are typically much healthier than their nursing-home counterparts) had been hospitalized in the previous year, a rate higher than for residents of nursing homes. And according to the report, most assisted-living staff do not have a basic understanding of the aging process: the vast majority thought, for example, that incontinence, confusion and depression were normal signs of aging rather than potentially reversible conditions. "There's absolutely no doubt that these facilities are more dangerous than nursing homes," says Karen Love, executive director of the Consumer Consortium on Assisted Living.

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