Families have been the foundation of the long-term care system in the United States — and an important part of the economy — but that could change during the next decade.
As people live longer, have fewer children and move more frequently, the burden of care will shift from family members to assisted living facilities and nursing homes. And the current Medicare/Medicaid system will break, experts say.
As part of a study about elder care, the AARP found that families, usually women, with full-time jobs outside the home, taking care of elderly relatives have an economic impact of $350 billion nationwide. In Colorado, the amount is $6.2 billion.
“Family caregivers play a vital role and are the backbone of long-term care in our state,” said Morie Smile, AARP Colorado spokeswoman. “While the care they provide often goes unnoticed, their contributions often delay or prevent more costly nursing home care and that can have a positive impact on our state Medicaid budget.”
Today, people 85 and older who need custodial care have an average of 11 people to help them, said Regis University instructor Karen Pennington, who is writing her dissertation about elder care. By 2030, she said, the number will drop to four.
The vast number of baby boomers is going to put a strain on an already strained system, she said. And the country is unprepared for both the boomers’ retirement and their medical needs.
“People are living longer,” Pennington said. “But they’re living longer with chronic illnesses. So they are going to need help. They’ll need people looking after them and for many reasons; family won’t be their main caregivers.”
Delaying having children, having fewer children and divorce will affect what elder care will look like in the future.
Most family caregivers are women who are employed full or part-time and nearly one-fifth of all U.S. workers are caregivers, according to the AARP study. As family caregivers are forced to take time off and work partial days to care for loved ones, they face lower wages, reduced job security and loss of employment benefits like health insurance, lower retirement savings and Social Security earning.
These losses come at a time when income and benefits are critical for the caregivers and their families.
Businesses also feel the impact. Productivity losses associated with care giving are estimated to be as high as $33 billion a year.
The AARP Public Policy Institute study, “Valuing the Invaluable: A New Look at the Economic Value of Family Care giving,” shows that among those with the most intense level of care giving responsibility, 92 percent report major changes in their working patterns — 83 percent arrive late, leave early or take time off during the day; 41 percent report taking a leave of absence; and 37 percent report changing from full-time to part-time status to accommodate their care giving responsibilities.
Additionally, the caregivers’ health is often at risk because they are more likely to suffer chronic conditions and incur more medical debt than non-caregivers.
That’s where Kathryn Curry comes in. She’s the local owner of Home Instead, a national franchise that provides non-medical in-home care to the elderly. In business for 10 years, she employs about 180 workers who care for seniors.
“There’s a huge impact on businesses, and I believe they don’t count it, they’re unaware of it — the loss of time, taking off for an elderly family member,” she said. “If I had to hazard a guess, I’d say most businesses don’t keep track of the lost revenue that comes from adult caregivers providing for elderly family members.”
But the loss comes from more than care giving responsibilities, she said. About 62 percent of adult caregivers say they suffer from stress-related illness stemming from the often overwhelming job of taking care of relatives combined with family and full-time jobs.
“There’s no question that it can be difficult,” Curry said. “We polled some of our clients — 82 percent said that taking care of loved ones was very demanding. Seventy-six percent said their care was overwhelming.”
The problems only will multiply during coming years because fewer family members will be available to care for the nation’s elderly.
“We don’t live as a nuclear family any more,” Curry said. “We’re all over the place. Especially in Colorado Springs — people don’t retire here because they have family here; they retire here because the climate’s mild, because they had a military assignment here. So when they need help, their family members are too far away.”
Curry estimates that 50 percent of her clients have family members in other states, who hire Home Instead to provide services that they can’t.
Don and Josephine Whaley have relied on Home Instead services for four years. With no family in the area, the close friend who looks in on them was overwhelmed. She arranged care for Josephine, now 98, and Don, 87.
Sharon Patterson provides daytime services — including help with exercises, transportation and other needs — and another provider comes at night.
Because they do not have close family members, Curry said that without outside help the couple, who met in occupied Germany after World War II, might have had to move into a nursing home, instead of living comfortably in their home of 16 years.
The results of the survey have shifted AARP focus, Smile said.
“We’re active in finding home based services, long term care services,” she said. “The need for that is going to be huge in Colorado. We want to keep people in place, let them stay in the homes, and have people come to them. So we’ve created a new area in AARP, a livable community, where staying at home, as long as possible is made as easy as possible.”
But that’s going to require a major policy shift, Pennington said. Medicare doesn’t cover in-home health services, unless the health of the family member providing care is jeopardized.
“The cost of care is not cheap,” she said. “Over the years, we’ve had more failed legislation than we’ve had successful legislation.”