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In-home care of dementia patients falls mainly on women

Stanford School of Medicine News May 15, 2017

As the population ages, a surge in patients with dementia will place an inordinate burden on working women, risking hard–fought gains for equality in the workplace, according to Stanford researchers.

The responsibility of providing care to the vast number of patients with dementia expected over the next 20 years will disproportionately fall on working women, according to researchers at the Stanford University School of Medicine.

The best long–term care insurance in our country is a conscientious daughter, the authors wrote in a perspective piece published May 8 in JAMA Neurology journal. The article points to a lack of affordable in–home care options in the United States other than unpaid family members, primarily women.

As more baby boomers reach retirement age, experts predict a corresponding surge in cases of dementia: By 2030, an estimated 8.4 million Americans are expected to be suffering from some form of the disease.

Today, most of the care for these patients – 83 percent – is provided by unpaid family members, two–thirds of whom are women, the authors wrote.

"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.

Concern about this troubling health care dilemma grew out of research by a team of design fellows at Stanfords Clinical Excellence Research Center. They were investigating ways to provide better care at lower costs for patients with dementia and other cognitive disorders.

As our CERC fellows dug below the surface of dementia care, they detected a growing threat to health equity and tangible opportunities for action by policymakers and clinicians, said co–author Arnold Milstein, MD, professor of medicine and director of CERC.

"I have a very personal history with this topic," said Clifford Sheckter, MD, a CERC fellow and co–author of the article. "My grandmother, my mom, got dementia when I was in college at UCLA. 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. It was so hard on my mom."

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 jobs demands and unrelenting tasks, such as toileting and bathing, can be overwhelming. The article also asserts that ts not likely that men will step up and share in the caregiving anytime soon.

If nothing is done to plan for this shift in caregiving demands, not only will women and their families suffer, an increase in costs will fall on employers from absenteeism, productivity loss, stress–related disability claims and health benefits plan spending, the article said.

I come in contact with these patients often, said co–author Nicholas Bott, PsyD, a neuropsychologist and CERC fellow. When youre working with a patient who has this disease, you are also working with the family. It raises tensions for the entire family unit. It causes friction in the relationships. You end up doing a lot of triage for the family members.

The article 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, Milstein said.

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