Women shoulder a disproportionate amount of responsibility in caring for family members with dementia, say the authors of a new scientific article—a disturbing trend that is likely to get worse as the American population ages over the next 20 years.
Many families can’t afford professional in-home care, researchers from Stanford University wrote last week in JAMA Neurology, leaving unpaid relatives as the best or only option. Historically, these jobs have fallen to women: Research shows that wives are more likely to care for husbands than vice versa, and daughters are 28 percent more likely to care for aging parents than sons.
This trend has continued, the authors note, even as women now make up nearly half of the workforce. Today, 83 percent of dementia patients in the United States are cared for by family members, and two-thirds of those family members are female. The authors go so far as to declare that “the best long-term care in our country is a conscientious daughter”—a sentiment that millions of American women can relate to as they shuttle their parents to and from appointments, file paperwork, research medications, and advocate on their behalves.
But that’s a problem, the article states, since experts predict a surge in dementia diagnoses as more baby boomers enter their senior years. By 2030, one in five Americans will be 65 or older, and an estimated 8.4 million people are expected to have Alzheimer’s disease or another form of dementia—up from 5.5 million today.
If women continue to shoulder an uneven percentage of this burden, the researchers say, they’ll be at higher risk of hampering their careers or leaving the workforce early due to time constraints, emotional stress, and other caregiver-related demands. “Hard-fought gains toward equality in the workplace are at risk,” the authors wrote.
And while caring for a loved one with dementia can be a labor of love, it can also be overwhelming: It requires an average of 171 hours per month, by one estimate, and involves daunting tasks like bathing, toileting, and always being on call for emergencies or unexpected problems.
In a press release, co-author Clifford Sheckter, M.D., a fellow at Stanford’s Clinical Excellence Research Center, recounted his own mother’s struggle caring for a parent with dementia. “I remember my mom having to leave work two to three times a day to come home—whether my grandma had taken a fall or was calling my mom on the phone and screaming, it was relentless,” he said. “It was so hard on my mom.”
Doctors can help ease the burden on female relatives of dementia patients by educating families about what kind of care will be required of their loved one, referring them to caregiver support services, and helping them make the best decisions for everyone involved, the authors say.
They also urge employers to play a bigger role by offering flexible policies that allow caregivers to adjust to new situations and devote time to sick relatives without fear of suffering penalties at work. As one example, they cite Deloitte LLP—an accounting and consulting firm that began offering employees up to 16 paid weeks of family leave (including for aging family members) last year. Government tax subsidies for employers who adopt these policies could help, too, they say.
But just as importantly, husbands, sons, and brothers need to get on board, as well. “It remains to be seen whether men can be persuaded to assume an equal share of the burden of caregiving,” the authors write. “While gender parity in childcare is modestly growing, gender parity in dementia care is unlikely to occur anytime soon.”