In senior housing facilities where residents are required to relocate as heath issues worsen, seniors tend to isolate themselves and may hide health conditions out of fear of relocation, according to a new study.
Transitioning from independent living to assisted living to skilled nursing in one place can be disruptive and stressful, as researchers have known for 30 years, the authors write in The Gerontologist.
"Our sample is primarily white, mostly private pay," but this type of multilevel housing is found across the US, said lead author Erin G. Roth of the department of sociology and anthropology at the University of Maryland, Baltimore County.
Stigma is common in these settings, Roth told Reuters Health by email.
"For senior housing developers, multilevel senior housing has proven to be profitable in many ways - it's heavily marketed and has become the prevalent model for senior housing and care," said Kevin Eckert, another author of the paper, also of UMBC. "It is more cost-effective, profitable, and convenient to group people together by levels."
"The social challenges that result are often recognised by staff and administrators but the difficulty for everyone is in imagining a true alternative, when the model so thoroughly dominates the senior housing landscape," she said.
The researchers considered two National Institute on Aging-funded studies of various housing options, including continuing care retirement communities and dementia care units where multiple levels of care are available within a campus or building.
In total, they used 470 interviews with 367 residents, family, staff and administrators at seven facilities.
Interviewers asked open-ended questions about what life is like at the facilities, including transitions between levels of housing.
In every facility, the unit with the highest level of care was stigmatised, with residents referring to it with names like "The Twilight Zone," "The Dark Side," "Death Valley," "Sleepy Hollow," or "God's waiting room."
One administrator noted that few residents in lower levels of care like independent or assisted living seem comfortable going to the higher level units to visit friends. Many interviewees commented that residents didn't like to mingle with others in different levels of care.
In one case, residents refused to ride on a bus marked to indicate that the people inside might be memory impaired.
"Many people shopping for a senior housing setting are not wanting to face the possibility of these next moves - and so staff have said that some people will decline the part of the tour that includes the nursing care centre," Roth said. "This points to a deeper sociocultural fear of death and decline that is so pervasive and is a contributing factor to the problems we layout in the article."
Some residents fear that facility staff are closely watching them, looking for signs of deterioration that would necessitate a move to a higher level of care. One resident spoke of keeping her progressive blindness from staff so they would not move her to assisted living.
The power differential can lead to an adversarial relationship between resident and staff, the researchers write.
"Most people aren't aware of these social dynamics until after they're settled and may not have the energy or power to make a change or advocate for a different model," Roth said. "Instead, most seniors choose to adapt or focus on the positives."
The Metlife Mature Market 2012 Survey of long term care costs lists some useful questions to ask when looking for a nursing home or assisted living, said Debra Dobbs of the School of Aging Studies at the University of South Florida in Tampa, a co-investigator on the study.
The federal government's Nursing Home Compare tool has useful quality indicators, survey deficiencies and payment types for every nursing home available for public view, Dobbs told Reuters Health by email.
According to a new analysis by the Kaiser Family Foundation, more than a third of the 15,500 nursing homes in the US received low ratings of 1 or 2 out of five stars in the Nursing Home Compare quality rating system.