As Washington debates the relative merits of health care legislation, many families have already come up with what is arguably the most reliable form of care in America: It’s called daughter care.
The essential role that daughters play in the American health care system is well known but has received little attention. But some health care analysts are beginning to sound the alarm about the challenges women face as caregivers — not just for children but for aging parents — often while holding full-time jobs.
This week, the medical journal JAMA Neurology highlighted a looming crisis for women and their employers: the growing ranks of dementia patients who will end up relying on family members, typically daughters, for their care.
“The best long-term care insurance in our country is a conscientious daughter,” wrote the authors, all of whom are fellows at Stanford University’s Clinical Excellence Research Center, which studies new methods of health care delivery.
The authors note that by 2030, one in five Americans will be 65 or older, and the number of elderly Americans living with dementia is expected to increase to 8.5 million, up from 5.5 million now.
Most dementia patients eventually require round-the-clock care, yet there is no clear national road map or overarching plan for providing it. Most of the care for older adults in the United States — from paying bills to feeding, bathing and dressing — falls on unpaid caregivers, and most of them are women.
Though men do provide some caregiving for older family members with dementia, the burden is not shared equally, experts say.
“Women are at the epicenter of caregiving as a whole, and Alzheimer’s caregiving in particular,” said Ruth Drew, director of family and information services at the Alzheimer’s Association. “Even though two-thirds of people with Alzheimer’s are women themselves, two-thirds of the caregivers are also women. So there are more wives caring for their husbands than the reverse, more daughters caring for parents than sons.”
“We see a lot of daughters caring not only for their parents, but their in-laws,” she added.
Most experts don’t anticipate that changing significantly. That’s because, despite progress, women continue to do a disproportionate amount of child care.
Though men have become more involved and taken on more responsibilities at home, “it hasn’t been a significant contribution and certainly hasn’t kept pace with women’s increased participation in the work force,” said Dr. Clifford C. Sheckter, a fellow at Stanford University’s Clinical Excellence Research Center, surgery resident and a co-author of the essay.
When it comes to caring for people with dementia, “the numbers are skewed strongly toward women, and it’s hard to imagine that by 2030 the numbers will even out to 50-50,” said Nicholas Bott, a neuropsychologist and another co-author who is also a fellow at the Clinical Excellence Research Center. “It shouldn’t be an unspoken rule that this falls on certain members of the family, but as of now, it still is falling primarily on the daughters and female spouses more than on men.”
Dr. Sheckter recalled how this played out in his own family. When his grandmother started losing her cognitive function and diabetes complications left her blind, Dr. Sheckter’s mother, a nurse, started using her lunch breaks at the hospital to run home and check on her.
One day she found her mother backed up in a corner of a room, disoriented and agitated; another time she was trapped in a closet. When the grandmother became incontinent, Dr. Sheckter’s mother had to clean up the mess and bathe her.
“The hospital wasn’t happy about her absences,” Dr. Sheckter said, but the family lived in a remote rural area in the Sierra Valley of California, and it was hard to find help.
Eventually the situation was untenable, and the family placed Mrs. Sheckter’s mother in a nursing home. “This was my mom’s mom, so my dad didn’t really pitch in,” Dr. Sheckter said. “I don’t blame him for that — but it really did fall on my mom. She was a saint.”
According to a report from the Alzheimer’s Association, employed women who are caregivers are seven times more likely than men to cut down from full-time to part-time employment because of caregiving duties. They are more likely than men to take a leave of absence from work, to lose employment benefits because they cut back their hours or to be forced to quit working altogether. A significant percentage say they were penalized at work because of their caregiving responsibilities.
“We hear women say their opportunities for advancement or for taking on special projects can be impacted as well,” Ms. Drew said. Caregiving can have long-term financial implications, “affecting a person’s career trajectory, their retirement funding, their ability to send their kids to college.”
Women are also are more likely than men to say that caregiving is physically difficult and has strained their marriages, and caused them to lose contact with friends and become isolated socially.
For many people, the cost of paying for care is prohibitive. Most American families are caught in what Dr. Bott called “the dementia doughnut hole”— neither wealthy enough to pay for full-time care at home or in a private facility, which can cost upward of $100,000 a year, nor poor enough to qualify for government programs like Medicaid. Many will “spend down” family savings in order to qualify.
Other caregiving support programs are spotty.
Some Medicare Advantage plans may provide limited in-home caregiving, hoping to cut down on emergency room visits and hospitalizations, but innovative initiatives like a proposal for “Medicare Part E” — which would let seniors trade hospital benefits for long-term care — have stalled, researchers said.
The international accounting and consulting firm Deloitte LLP has started a program that offers employees up to 16 paid weeks of leave to care for a family member, including an elderly parent. That doesn’t solve the problem, but would give employees the time to put in place a comprehensive long-term care plan, experts said.
As medicine advances, people are surviving longer and longer with chronic conditions, and will need more and more caregiving,” Dr. Sheckter said. “At some point, our country will have to decide how to go with this.”
Until then, it seems clear that women will continue to shoulder a disproportionate burden of the care. “A lot of women have been in caregiver roles traditionally,” said Ms. Drew. “They may have that skill set, or intention, or a feeling of obligation.”
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