When Stanford researcher Clifford Sheckter, MD, was an undergraduate at UCLA, his grandmother was diagnosed with dementia. He remembers well the struggles his mom went through trying to balance in-home care for her own mother while holding down a job. Those memories helped inspire a perspective piece he and researcher Nicholas Bott, PsyD, published earlier this week in JAMA Neurology.
“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 told me for a story I wrote on his perspective piece. “It was so hard” on her.
As design fellows at Stanford’s Clinical Excellence Research Center, the two authors — who wrote the piece with their advisor Arnold Milstein, MD, director of CERC — were digging into research about how to provide better low-cost care for patients with dementia and other cognitive disorders when they stumbled upon some disturbing statistics: Today, most of the care for these patients — 83 percent — is provided by unpaid family members, two-thirds of whom are women. And the responsibility of providing care to the growing number of patients with dementia expected over the next 20 years will disproportionately fall on working women.
As I explained in my article:
‘Wives are more likely to care for husbands than vice versa, and daughters are 28 percent more likely to care for a parent than sons,’ the authors wrote, adding that because women now make up almost 50 percent of the workforce, these burgeoning demands will disproportionately fall on them — and put them at higher risk for lowering or exiting their career trajectory.
‘Hard-fought gains toward equality in the workplace are at risk,’ they wrote.
The authors noted that while caregiving for loved ones with dementia can certainly be meaningful, the amount of time required — an average of 171 hours per month, according to the article — combined with the unpredictability of the job’s demands and unrelenting tasks, such as toileting and bathing, can be overwhelming. The article also asserts that ‘it’s not likely that men will step up and share in the caregiving anytime soon.’
Milstein told me the piece was written to sensitize physicians to the demands on family members caring for patients with dementia, the need to educate families about what will be required and the importance of referring them to caregiver support service. And Schekter said he wished his family had received better support when his grandmother got sick.
Previously: Caregivers experience high rates of anxiety, depression, study finds, When dementia hits home: the global impact of dementia on women, Study suggests yoga may help caregivers of dementia patients manage stress, and Stanford neuroscientist discusses the coming dementia epidemic
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