A new study has found that many older adults admitted to long-term care (LTC) homes end up living their final years in a state of severe disability, often unable to make even simple daily decisions like what to eat or wear.
The research highlights the importance of discussing quality of life and end-of-life wishes earlier, so that care can better match what residents actually want.
The study, conducted by researchers at the Bruyère Health Research Institute and ICES in Ontario, followed more than 120,000 people aged 65 and older who were newly admitted to long-term care homes between 2013 and 2018.
The participants were tracked until they died, left the care home, or until April 1, 2023.
One of the most striking findings was that 1 in 5 residents became permanently unable to make their own everyday decisions within five years of moving into long-term care. Many of these individuals lived in this condition for a long time—half of them for at least 262 days.
About 13% of residents eventually became completely dependent on others for all their personal care, including eating, bathing, and using the bathroom. Among this group, half lived more than 45 days in this state of total dependence.
Younger residents under age 80 and those with dementia were more likely to live longer once they reached this stage of severe disability.
Meanwhile, residents who had advance care plans—such as “do not resuscitate” (DNR) or “do not hospitalize” (DNH) orders—tended to spend less time in this condition. These documents often reflect a person’s preferences to avoid aggressive medical treatment when it no longer improves quality of life.
According to lead researcher Ramtin Hakimjavadi, an internal medicine resident at the University of Ottawa, the study was meant to shed light on what really happens to people after they move into long-term care.
“Many residents have said in interviews that losing their independence is more upsetting than the idea of dying,” he said. “If we don’t talk about these possible outcomes, we’re not providing care that respects what people truly want.”
The study suggests that having early conversations about what matters most to residents can make a big difference. When people have the chance to express their wishes—such as wanting comfort over life-extending treatments—their care can be better tailored to those values.
Dr. Daniel Kobewka, the study’s senior author, emphasizes how important it is for families and care teams to talk about these issues. “We should be asking: What does a good quality of life mean for this person? And at what point might they prefer not to continue with certain treatments?” he said.
The research ultimately calls for a shift in how we think about aging, long-term care, and end-of-life planning.
Rather than waiting until someone is already severely disabled, the study suggests that open discussions—ideally before entering long-term care—can help avoid situations where individuals live for extended periods in ways they might not have chosen for themselves.
The message is clear: planning ahead and having honest conversations about care preferences could improve the experience of aging, helping people spend their final years with more dignity and comfort.
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The research findings can be found in JAMA Network Open.
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