The Working Mother Research Institute surveyed nearly 2,500 women, including more than 1,200 who have cared for a loved one with Alzheimer's, to get a clear picture of how the responsibility of caregiving affects their emotional, financial and work lives, as well as their families.
Women and Alzheimer'sDisease: The Caregiver's Crisis was sponsored by GE and designed with input from the Alzheimer's Association. It explores not only the burden of caring for a loved one with the disease, but also ways that employers, doctors and families can help caregivers lighten their loads ever so slightly.
They also talked to women who are not caregivers, to learn more about how well they understand the disease and to get a sense of their feelings about it.
Among the conclusions:
· Employers can’t afford to overlook the issue of Alzheimer’s. As society ages and workers retire later, there will be ever more Alzheimer’s caregivers on the job, says Ellen Galinsky, president and co-founder of the Families and Work Institute. “Our data shows 49 percent of workers expect to be caregivers within the next five years,” she says.
· Doctors need to be more proactive. Despite women’s higher risk for the disease, doctors aren’t regularly discussing Alzheimer’s or aging at checkups. More than three quarters of respondents say their physician hasn’t broached either topic.
· A substantial number of women are stuck in a caregiving role. Although 30 percent want to provide care themselves, even more—39 percent—appear to be trapped (no other family member can do it, it feels “expected,” or they can’t afford or don’t like the available facility care.)
· Whether they are tending to someone by choice or by default, caregivers are struggling in every area of life. They are more likely than their predecessors to feel overwhelmed, to feel they don’t have a choice in taking on the role and to be experiencing a financial drain. As well, at a time when extra income is sorely needed, caregiving often places a women’s career on hold—she’s less likely to take a promotion and much more likely to make schedule adjustments (scaled-back hours, a leave of absence) that reduce her chances for immediate advancement.
· Within the caregiving group, minorities are struggling the most. They spend more on caregiving overall and are twice as likely as white caregivers to spend more than $10,000 per year. They also have fewer hours of help at home, despite being nearly twice as likely to be caring for a patient in the late/severe stage of the disease.
· Caregiver health is a major issue, given that these women often take better care of the loved one with Alzheimer’s than themselves. The Alzheimer’s Association estimates that caregiver health problems cost the U.S. $8.7 billion each year.