As a geriatrician, or physician specially trained to treat older adults, Kenneth Lam, MD, MAS, has many years of experience working with families to understand when their older relatives should move into a nursing home or assisted living facility, and what kind of services they might need.
“They might be deteriorating and becoming less able to care for themselves, and the family members would ask us, ‘Where do you think this person should go? What services should they get? Should they move into an assisted living facility, or should they move into a nursing home?,’” says Lam, assistant professor of geriatric medicine in the University of Colorado School of Medicine. “In my clinical practice, I had honed a sense of where people belong, but as I started to move into research, it kept bothering me: This is a really big decision, and I had never seen any data around it.”
Lam set out to provide data in a paper published November 6 in the journal JAMA Internal Medicine. Titled “The Natural History of Disability and Caregiving Before and After Long-Term Care Entry,” the research looks at the ages at which people enter care facilities and their disability levels prior to entry.
“I learned about a dataset called the National Health and Aging Trends Study, which follows older people every year and asks questions like, ‘Can you get dressed on your own? Can you get around in your home on your own?,’” Lam says. “It also asks questions like, ‘How many people help you? How many hours of help are they giving you?’ Those were exactly the questions I was asking — how independent are people before they go into a facility, and how much help do they tend to get? What does the process leading up to that point look like?”
After crunching the numbers, Lam found that the mean age for people entering care facilities is 84, and their entry is typically preceded by months of severe disability and escalating caretaking at home, typically by unpaid family members.
The average person moving into a nursing home is already severely disabled and receiving about 27 hours a week of care for at least one month, he found. Severe disability means they have a lot of difficulty or someone is already helping them with three activities of daily living, like getting dressed, bathing, and moving around inside their home. Older adults moving into assisted living are less likely to be severely disabled but are receiving 18 hours a week of care.
“Clearly, many people are providing a lot of care at home, and also dealing with severe disability at home, for months or years before these people move into nursing homes,” he says. “It’s less of an issue for people moving into assisted living facilities, and that might reflect the sociodemographic advantages of people who tend to move into assisted living facilities.”
One of the interesting facts Lam discovered is that for the group that moved into assisted living facilities, levels of severe disability approached those of nursing home residents within one to two years.
“There's been a lot of discussion of late saying, ‘What is the interrelationship between assisted living and nursing homes?’,” he says. “The data show that after a few years, people who moved into assisted living start to look much more like people who moved into nursing homes. This leads to more questions: Should people stay at assisted living facilities forever, or do we need to have upfront conversations about what care might look like in those places a couple of years down the line?”
To Lam, the data suggest that nursing home entry tends to happen late in the course of disability. “Everyone wants to know why,” he says, “but that’s a much harder question to answer.” It may be because of stigma. People are afraid of what will happen to their relatives once they enter one.
It may also be because of affordability. “You have to have a low enough income and low enough assets to qualify for nursing home coverage; otherwise you have to pay out of pocket. Most people can’t afford that,” he says. “These data give a picture of the moment when people and society has decided to make this trade off — when they say, on average, ‘I can't do this anymore, now you get help.’”
Lam is following up the quantitative study with some qualitative research, interviewing people who have recently moved into nursing homes or assisted living to understand the circumstances of their entry, how it changed their social lives, and what advice they would give to other people in the same situation. He is also looking at the role of dementia in the decision to move someone into a long-term care facility.
“I knew this was a really big decision that was really important to people,” he says. “I felt it deserved more robust research, rather than just my advice and opinion.”
Now that his report has been published, Lam hopes it provides a starting point for clinicians, patients, and families to weigh options around long-term care for older persons. “Too early” and “too late” are terms relative to each person’s individual situation, he says, but the study sets a bar around which one can start having conversations.
“Now we know at what age people move in, on average, and from there you can start to define what it means to move in early or move in late,” he says. “The next step is to figure out if moving in early or moving in late makes a difference, and if so, a difference in what? That is an important and different question. It's a tricky problem, and this paper is trying to open up the discussion around it.”