Oct. 15, 2010 -- One of the nation's highest-profile women is taking on one of the nation's highest-profile health problems that have affected her father and more than five million other Americans.
The Shriver Report: A Woman's Nation Takes on Alzheimer's is a collaborative research effort by California first lady Maria Shriver and the Alzheimer's Association that calls on society and government leaders to address the needs of patients and caregivers, fund more research into treatment for Alzheimer's and other brain diseases and help people prepare for the possibility of a future Alzheimer's diagnosis. The report's main focus is the impact the disease has on women.
"Alzheimer's is a woman's disease that's dramatically changing the way we live as families," Shriver said. "Sixty percent of people with Alzheimer's are women, and 60 percent of the caretaking is done by women."
Doctors say there's a simple reason more women have Alzheimer's.
"Women outlive men much longer, so there are more women with Alzheimer's disease," said Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center.
This year's report builds on last year's Shriver Report, A Woman's Nation Changes Everything, that found that about two-thirds of women now have to be their family's breadwinner in addition to being a wife, mother and caretaker for elderly or sick relatives.
"The challenge really has got to be how do we support women in all of these roles? They're strapped and stressed at all ends of the spectrum," she said.
Alzheimer's disease hits close to Shriver's heart. Her father, Sargent Shriver, has had the disease since 2003.
"Today he doesn't know I'm his daughter, and he doesn't even know my name," Shriver wrote in the report.
At the same time she was caring for her father, she also took care of her elderly and ill mother, who died in 2009.
"When I was out doing the women's report, I found many women in my situation -- raising children, working and caring for elderly parents," she said. This isn't the first time Shriver has taken on Alzheimer's -- she produced a documentary and also wrote a book on the disease.
Women Who Are Caregivers Face Staggering Burden
Much of the information in the report comes from the Alzheimer's Association's 2010 Women and Alzheimer's Poll, which involved interviews with more than 3,100 people, including more than 500 caregivers.
According to the poll, 68 percent of women who were caregivers experienced emotional stress, and 51 percent of them said they suffered from physical stress.
Alzheimer's experts praise the report for drawing attention to the challenges caregivers face.
"One of the most interesting things is that often, women actually don't even realize they need the support or that's it's acceptable to get support, because they're so used to caring for children and taking care of other responsibilities," said Mary Sano, director of the Alzheimer's Disease Research Center at Mount Sinai School of Medicine. "This additional burden is taken on without even realizing it's going to have an impact on them and everything they do."
"If a woman is providing care, she can't provide for other family members, can't be out in the workforce, etc.," said Kennedy.
The strain on caregivers and their families is just part of the enormous Alzheimer's price tag, and families pay more than 60 percent of it.
"The economic cost ... is now about $300 billion a year and could triple in coming decades," the report says. Some 78 million Baby Boomers are getting older, which will drive up costs.
Shriver hopes for legislation that will make it easier for women to get time off and help relieve financial strain.
"I hope that they'll look at adjusting social security and give people credit for time off as caregivers," she said.
The report also calls for more affordable services for people with Alzheimer's to take some of the stress off caregivers, more programs designed to help caregivers deal with negative emotions, more flexibility in the workplace and more support for men who serve as caregivers.
Experts say there are some support services available for caregivers, but the health care system makes them difficult to get.
"There's a care coordination component, a third party -- a social worker, trained nurse or a psychologist that works with a family to provide what is called caregiver coaching and provide more readily achievable access to care, which is what families need, but the insurance companies don't pay for it," said Kennedy.
"There's respite care, daycare, home care and nursing home care, but by the time a lot of people get to the moderate to severe Alzheimer's stage, they require 24-hour care," said Dr. David Bennett, director of the Rush Alzheimer's Disease Center at Rush University Medical Center. "Day care, nursing home care and home care are expensive and there's not much support for it."
Long-term care insurance is costly, and Medicare does not pay for nursing home care. The Community Living Assistance Services and Supports Act became law as part of President Obama's health care reform, and it will provide voluntary long-term care insurance provided by the federal government starting in 2011.
Despite this new law, the Shriver Report says it's not nearly enough to offset much of the financial burden of long-term care, and urges the government to make more financial assistance available.
"As terrible as the disease is today, if we continue at this rate, we won't understand how devastating it's going to be for families and for society and for the economy," said David Loewenstein, professor of psychiatry and behavioral sciences at the University of Miami School of Medicine.
More Promising Research Needed
While experts say there is a lot of research going on, they believe a lot of it has not been promising.
"It's clear that our leads on groundbreaking treatments are small," said Sano. "We're not making the progress we hoped to make in that area, though there's a good deal of research going on."
"There's been a shift toward researching disease-modifying agents that could change what's happening in the brain," said Bennett. "Those studies have been going on for the last few years and none of the agents has worked."
"That means identifying biomarkers and intervention studies, which are expensive," he added.
The nature of the brain itself also presents a huge challenge for researchers.
"Unlike other organs in the body, there is a significant challenge to understanding the complexity of the brain," said Loewenstein. "There are billions of neurons, unlike other organ systems that are more straightforward to study."
Despite the grim statistics, Shriver says there's been a lot of progress.
"There's been a lot written about it, a lot of trials, we've certainly been able to tie cardiovascular health to brain health," she said. "There's a lot of good preventive information that's gone out, so there's a lot of hope, but people get pessimistic because there's no cure."
One of her biggest hopes is to get people talking about Alzheimer's.
"We're trying to take it out of the closet and put it into the living room."