“Katie. Come here. Close,” says Grace, whispering. Kate walks to her mother. “Do you know who that man is?”
“What man?” asks Kate.
“The one who just went out for a Danish,” says Grace.
“That’s daddy. Your husband. Jack,” says Kate.
“Just checking,” says Grace, covering.
The scene is from the play “Surviving Grace,” but similar stories are taking place in the homes of over 5 million Americans—and 36 million people worldwide—diagnosed with Alzheimer’s Disease.
Alzheimer’s is an irreversible and fatal brain disease that destroys memory and thinking skills. Although it’s a disease that typically develops among older people, it’s not a normal part of aging.
Inexplicably, about two-thirds of Alzheimer’s patients are women. In an unfortunate double whammy, women are also 70% of the more than 15 million caregivers to Alzheimer’s patients—an unpaid, 24-7 job worth more than $216 billion in wages.
This was definitely the wrong ceiling to break,” says playwright Trish Vradenburg. She wrote “Surviving Grace,” starring Carol Burnett, Marilu Henner and other celebrities, to share her mother’s story—and to raise money for research.
“I wanted to stop the cycle,” says Vradenburg, also a co-founder of the Women Against Alzheimer’s Network (WA2). “Anytime you see this up close, you know how awful it is.”
The impact of Alzheimer’s on both families and caregivers can be devastating, says Meryl Comer, president of the Geoffrey Beene Foundation Alzheimer’s Initiative and co-founder of WA2. In fact, four in five caregivers report feelings of stress, anxiety and depression. Like many women, Comer quit her job to become the primary caregiver for a family member suffering from Alzheimer’s. Comer left an on-air position in broadcast journalism, in her mid-40s, to care for her husband, diagnosed with early onset nearly two decades ago. And she’s concerned the growing demand for care and lack of quality nursing options will compel other women to do the same. “I am worried that the same generation of women who fought for equal opportunities in the workplace is now being forced out,” she says.
“We’re going to lose so much of what we accomplished,” adds Vradenburg. “I was marching in the late 60s for women rights, and now it feels like I’m marching backward.”
As the Baby Boomers age, the number of Alzheimer’s patients is expected to nearly triple, reaching 13.8 million people by 2050. Boomers have been turning 65 since 2011 at the rate of 10,000 a day, 4 million people a year, said Comer. “It’s the dark side of longevity that no one ever predicted or prepared for financially,” she added.
The economic cost of dementia was up to $215 billion in 2010, according to a RAND Corporation study—primarily because of long-term and institutional care. By 2040, that could increase to $511 billion in inflation-adjusted dollars, the study reports.
The White House responded last year with a National Plan to Address Alzheimer’s Disease by 2025. But it’s not enough, said Vradenburg. More than $200 billion is spent annually treating Alzheimer’s—about 400 times more than the amount spent on finding a cure.