(Reuters Health) - Unpaid family and friends provide the overwhelming majority of care to the elderly in their last year of life, according to a new study highlighting the need to expand supportive services to caregivers.
In 2011, 2.3 million caregivers tended to the needs of an estimated 905,000 older Americans in their final year of life, the report in Health Affairs found.
Nearly 9 in 10 of the caregivers were unpaid, and only 9 percent of dying older adults received money for caregiving from government or private insurance.
“Supporting caregivers is an urgent public health issue,” said lead author Dr. Katherine Ornstein, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.
“We have a huge reliance on families throughout the course of serious illness, but especially at the end of life. It’s the most complex and challenging time, and it’s really the families who are involved,” she said in a phone interview.
Ornstein and her team used two previous national studies to estimate the number of people tending to the basic needs of Medicare beneficiaries who were 65 and older and in the last year of their lives. Only 14 percent of the caregivers were spouses, and nearly two-thirds of the spouses reported receiving no help from other relatives or friends.
Caregiving includes assistance with basic activities, such as eating and bathing.
The spouses reported caring for their husbands and wives for an average of 10 years and an average of 44 hours a week and were more than twice as likely as other end-of-life caregivers to feel depressed.
The children of dying elders, especially the daughters, carried the biggest burden, the study showed. Daughters provided more than 38 percent of caregiving to their parents, while sons provided 22 percent.
“We’ve known that families are involved,” Ornstein said. “But here’s proof. They’re especially involved at the end of life. What can we do to make it easier so they can do their jobs?”
“We have to think more about policies that will support caregivers at the end of life,” she said.
The researchers identified 2,423 community-dwelling older adults receiving help in 2011. Based on the fact that 264 of them died within the year, the researchers estimated that 905,000 elderly community-dwelling older adults received help from an estimated 2 million unpaid caregivers in their final year.
“This article is a call for attention for the important role of caregivers in caring for an aging population and for Congress to start thinking about how to restructure Medicare for an aging society in which people are having multiple chronic illnesses and need assistance with daily living at the close of life,” said Dr. Joan Teno, a professor of medicine at the University of Washington in Seattle. She was not involved with the new study.
“We have a healthcare system that’s built around the needs of the healthcare system and not the needs of the family,” she said in a phone interview. “We have an aging society, and we have little time to deal with the silver tsunami we’re not ready for.”
Medicare was designed in the 1960s for a different population, Teno said. Today’s older adults more frequently face death at home after being sent home from hospitals sicker and with more complicated needs, she said.
Many of the caregivers are members of the so-called sandwich generation, children of the elderly who are at the same time still caring for their own children, Teno said.
Ornstein was surprised to see that end-of-life caregivers were not more depressed, anxious or stressed about money than caregivers ministering to people with longer than a year to live, she said.
“It really speaks to the fact that the challenging job of a caregiver is not necessarily restricted to a few months before one dies,” she said. “Certainly individuals are more vulnerable at the end of life. Support for caregivers may be more urgent at the end of life but important through critical illness.”
SOURCE: bit.ly/2sJlIhy Health Affairs, online July 5, 2017.