People who live long are much more likely to be disabled and require caregiving during their last months of life, two new studies found.
A national study of more than 8 200 older Americans revealed that more than one of every three seniors can expect to experience disability within their last year of life that will affect their ability to handle daily activities such as dressing, bathing, eating, getting in or out of bed, walking across the room or using the toilet.
And a smaller survey of 491 seniors in New Haven, Connecticut, found that disability ramps up quickly in the last few months of life. Five months before death, about 27% of the seniors surveyed needed help due to disability; that number increased rapidly to 57% in the month prior to death.
"We found that about half of patients in that year preceding death had serious symptoms that forced them to either stay in bed or cut down on their normal everyday activities," said Dr Sarwat Chaudhry, lead author of the New Haven study and an associate professor at Yale University School of Medicine's Section of General Internal Medicine.
People commonly think that if they are disabled at the end of their life, it will come as the result of a fatal disease like cancer, Chaudhry noted. Her study revealed that is not necessarily the case.
Burden of symptoms
"Cancer was a little bit higher, but really those curves are almost on top of each other," Chaudhry said. "Patients who died of dementia, frailty, organ failure – all had a very similar burden of symptoms, with rates increasing five months prior to death."
The number of seniors in the United States older than 85 is expected to triple over the next four decades, growing from 5.4 million in 2008 to 19 million in 2050.
This pair of studies, published online July 8 in the journal JAMA Internal Medicine, serves as a wake-up call for a society that will face a huge number of people who will need help during their final months of life, said Dr Nancy Keating, associate professor of medicine and health care policy at Brigham and Women's Hospital and Harvard Medical School, both in Boston. Keating was not involved with the research.
"We need to be prepared for what the burden is on our society and on family caregivers and other caregivers who take care of these people," Keating said. "It's a huge problem. Americans are aging, they're living longer, and with the aging population we're going to have an extraordinary number of people who are going to need help."
In the national survey, researchers at the University of California, San Francisco (UCSF), spoke to a representative sample of seniors, interviewing each person at least once during their last two years of life. The study ended up including more than 8 200 people with an average age at death of 79.
The survey found that disability increased from 28% two years before death to 56% in the last month of life. People who died at the oldest ages were more likely to have suffered a disability late in life: 21% for those 70 to 79 years old, 32% for those 80 to 89, and 50% for those 90 or older.
"Our data do raise the question of whether it makes sense to sell the public a view of aging that purports that it is reasonable to expect to both live a long life and remain free of disability throughout life," Dr Alexander Smith, of UCSF, and colleagues concluded. "Our findings add to the evidence that those who live to advanced ages will spend greater periods of time in states of disability than those who die at younger ages."
Need for better palliative care
The survey in New Haven involved monthly interviews of 754 seniors, 491 of whom died during the course of the study. "This allowed us a unique look at what was [happening] over the last few months and the last years of life," Chaudhry said.
The Yale researchers discovered that disabling symptoms increased dramatically during the final five months of life, with nearly two of every three seniors experiencing disability in their last month.
"Our study is kind of calling to attention that disabling symptoms are common at the end of life," Chaudhry said. "They are affecting patients' independence and quality of life."
Chaudhry believes that an improved system of palliative care holds the answer to helping people nearing the end of their lives.
"Right now, relatively few of our patients are referred to a hospice at the end of life," she said. "There's a need for better palliative care throughout a patient's life rather than in the last months. That kind of care can be very important in improving the quality of life, maintaining independence, and reducing caregiver burden."
Keating said both studies call for a national reassessment of the availability of long-term care for seniors. Currently, most older Americans receive care from family members, she said, but as the elderly population grows there may not be enough caregivers to go around.
"More than 60% of women who live into their 90s are going to experience disability," Keating said, citing the UCSF study. "These are widowers who are not going to have their husbands to help take care of them. Even though some people are starting to think about their goals for the very end of their life, many people have no concept for what they would do if they can no longer live independently. We need to figure out the best way to help these people remain as independent as possible, but recognize that 40 to 60% of the people living into their 80s and 90s are going to need help due to disability."
For more on end-of-life issues, visit the U.S. National Institutes of Health.
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