Nearly half of aging Americans in assisted living facilities have medical needs that exceed the kind of care these residences provide, and yet family and the residents themselves are not adequately warned of those limitations, according to a new study led by doctors at Johns Hopkins University in Baltimore.
The findings, reported in the October issue of the Journal of the American Medical Directors Association, were accompanied by an editorial declaring that in many cases, assisted living residents look very much like nursing home patients. “The public is still not getting a balanced picture of the variability, capabilities and limitations of assisted living,” says Steven A. Levenson, M.D., medical director of the city of Baltimore, in the journal’s editorial.
More than 1 million Americans live in 36,000 assisted living facilities, according to the Center for Excellence in Assisted Living. The residences, with their welcoming, often well-appointed common rooms and private apartments, have become a popular option for older people who need some help with daily activities such as bathing and dressing but who don’t need to be in a nursing home. Still, the Hopkins study of nearly 200 residents in 22 assisted living facilities in Maryland found that 46 percent of the men and women in these facilities had three or more serious chronic conditions such as heart disease, emphysema and diabetes. Besides reviewing medical charts, researchers also interviewed the residents, their families and the staff of each home.
“There is a real difference between assisting with dressing and bathing, and overseeing, evaluating and guiding chronic medical conditions,” says Matthew K. McNabney, M.D., a geriatrician at Johns Hopkins and lead author of the study.
Assisted living facilities are marketed as homelike and comfortable. Moreover, families prefer them and want to believe that the residences will take care of their aging relative from admission to death, which generally is not the case.
Older people who are growing more dependent generally have multiple health conditions, McNabney points out, not just one. And the cumulative effect of those conditions “creates a real medical challenge,” he says.
As an internist who treats patients in assisted living, McNabney says he has “great interest in the management of medical issues, particularly chronic illnesses that are progressive and can become unstable.”
Residents with unstable medical conditions are not considered good candidates for assisted living homes because the homes usually have a limited medical staff. Only 54.4 percent of the residences in the survey had registered nurses or licensed practical nurses on staff, and most of them worked during the day. At night, medical emergencies were handled by calling an ambulance and taking the resident to the hospital.
Researchers found that almost half of the assisted living residents were taking medications—the blood thinner Coumadin, for example—that require frequent monitoring to ensure safety, including blood tests and other laboratory work, as well as regular consultations with physicians. And yet, many assisted living homes have no doctors and often no nurses, the study points out.
McNabney says many residents in assisted living “do just fine, but the key is to make sure everyone in these homes is receiving the level of care they need—when they move in and down the road as those needs increase.”
When Lucinda Conger’s 74-year-old mother began showing signs of dementia, Conger moved her into an assisted living residence in Washington, D.C. The plan was for her mother to live out her life there, close to her daughter, cared for and protected. But after less than a year, her mother needed more care, and management told Conger she had to hire nurses for her. That wasn’t enough. After three years of paying for nursing help, Conger was told that her mother’s health had so deteriorated that she needed to be moved out. “We had to find another assisted living home,” she says.
“It really isn’t always clear from the start how much care people in these homes will receive, and there was a big difference in the first residence and the second one we had my mother in,” Conger says. “The second one had nurses on staff, it monitored medications and had all kinds of services we didn’t get in the first.”
In his editorial, Levenson strikes a related theme. “As with nursing homes, many assisted living facilities perform admirably,” he writes. “However, overall performance across the country is uneven and often problematic.”
The industry itself is cognizant of this growing discrepancy between what assisted living facilities offer and what more and more residents actually need.
“People want to age in place—they don’t want to go to nursing homes. And that desire to stay where they are is contributing to this discrepancy,” says Steve Maag, director of assisted living and continuing care at the American Association of Homes and Services for the Aging in Washington, an industry group of nonprofit care facilities. “This trend has been common knowledge for years,” he says.
As for the variability in medical services—from real continuing care to very limited health care—Maag says assisted living facilities are regulated on a state-by-state basis; while some states have strong oversight rules on medical care, others do not.
But, he stressed, the industry is trying to address the issue by adding more trained staff and adapting its services. “And we want to give consumers more information about what is actually offered at each residence,” Maag says.
“The industry now is working with state agencies and consumer groups to develop a uniform disclosure statement for consumers,” he says. The University of North Carolina, with money from a federal grant, is creating a disclosure form, which Maag says will allow consumers to compare the types of services and levels of medical care each assisted living facility offers. He says the disclosure document could be in use as early as the end of 2009.
“The key message is to do your research when you are looking at assisted living options. Don’t just take the most attractive home,” says McNabney. “Ask how the facility manages complex medical needs and how will they handle these needs as the resident grows frailer and sicker. The capabilities of the facility need to be out there on the table to help consumers make the right decision.”
Barbara Basler is a senior editor at AARP Bulletin Today.