Maria Shriver is on a crusade. It's not a surprising role for a child of the Kennedy dynasty. After all, one uncle, President John F. Kennedy, led us through the Cold War. Another uncle, U.S. senator and presidential hopeful Robert F. Kennedy, fought for America's underprivileged. And her own father, Robert Sargent Shriver Jr., led America's war on poverty. So what is the goal of California's outgoing First Lady? Nothing less than defeating Alzheimer's disease!
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Through the experience she's had with her own father, Maria knows how devastating Alzheimer's can be. Now 95, Sargent Shriver, the first head of the Peace Corps and the 1972 Democratic nominee for vice president, suffers from the disease to the degree that he no longer recognizes his own daughter.
Testifying before a Senate committee on aging in 2009, Maria evoked images of her father prior to his 2003 Alzheimer's diagnosis. The words she used to describe him included "idealistic," "witty," and "a walking encyclopedia." As Maria said, "His mind was a beautifully tuned instrument that left people in awe and inspired.'
His current condition "is emotionally wrenching," says Maria, a broadcast journalist and wife of Governor Arnold Schwarzenegger. "Even though my mother [Eunice Kennedy Shriver] had strokes, broke her hip and died last year, I was able to handle that in some ways better than I'm able to handle my dad sitting across from me and not knowing who I am.'
Maria is using all her popular and political power in this battle. In October, she made the disease a focal point of her annual Women's Conference, a three-day forum that, according to its slogan, is designed to "empower women to be architects of change." Held in Long Beach, CA, the event featured a star-studded March on Alzheimer's that included Jane Fonda, Jane Lynch of the Fox TV series Glee and TV host-author-caregiver advocate Leeza Gibbons, among others.
It also touted the official release of The Shriver Report: A Woman's Nation Takes on Alzheimer's. The report is a comprehensive look at the disease and its impact on women as patients, advocates and caregivers, and was prepared in conjunction with the Alzheimer's Association. Its findings: "Sixty-five percent of people diagnosed with Alzheimer's are women, and 60% of those caring for people with Alzheimer's are women.'
Helping care for her own father has driven this point home for Maria. The first sign of concern in her own father, she says, was his constant repetition of questions. As a result, Maria, her mother and four brothers started to discuss the problem'but weren't clear as to what they should do. "We tried to handle it in private," Maria confides. "Even after the diagnosis, we thought, Should we tell anybody?" When invitations arrived, asking for her father to speak at public engagements, the family would simply send regrets.
Today, Maria regrets having shielded him in that way, admitting that maybe she should have consulted with her dad, who now has serious difficulty communicating. "The one person family members don't talk to when the diagnosis is given is the person who has the disease," she says. "I don't think we talked enough to our dad about what he wanted.'
Simply put, Alzheimer's disease occurs when brain cells, and the communications channels between them, deteriorate and die. This causes memory loss, confusion and difficulty completing familiar tasks. It is the most common form of dementia, and the sixth leading cause of death in the United States. More than five million Americans currently live with Alzheimer's disease. And with an aging population of 78 million baby boomers, that number is expected to reach as high as 16 million Alzheimer's sufferers by 2050.
A year after Sarge, as he is often called, was diagnosed, Maria wrote a children's book titled What's Happening to Grandpa? to help her four then-school-age kids deal with their grandfather's illness. In doing so, she also helped all children dealing with an Alzheimer's-affected family member. In another effort to educate not just her kids, but the public at large, Maria last year served as an executive producer of the HBO documentary The Alzheimer's Project.
Her kids, who now range in age from 13 to 21, are "very good with my dad," Maria says. "They joke with him. They don't remember him the way I do, so they're much more in the moment." Her second-youngest child, Patrick, 17, even sells clothes and bracelets marked with an "Unforgettable" label to benefit the Alzheimer's Association through a company he co-founded called Project 360 (teamproject360.com).
Back in 2003, people whispered about Alzheimer's, Maria said at the Senate hearing. Why the hushed tones? Maria cites "elderly bias." She notes, however, that such bias is misplaced because late-onset Alzheimer's'which hits folks over 60 and is the most common form of the disease'actually takes up to 20 years to develop. As a result, baby boomers in their 40s and 50s are learning to take precautions for the future, both physically and financially (see sidebar).
'It costs about $57,000 [a year] to [support] a loved one with Alzheimer's," says Maria, adding that medical insurance typically covers less than one-third of that. "So talk about long-term care insurance with your family. People actually end up going bankrupt from Alzheimer's.'
While there are drugs to slow Alzheimer's progression, clinical trials, and initiatives on the genetic and stem-cell fronts, Maria is pushing for a national strategy and awareness campaign. "I'm a big believer that we can advocate for an expedition to the brain much like President Kennedy advocated for an expedition to the moon," she says, evoking her late uncle.
To that end, she urges folks to lobby their local representatives in Congress to support the National Alzheimer's Project Act (NAPA). NAPA would establish an advisory council to address the government's efforts on "research, care, institutional services, and home- and community-based programs," according to the Alzheimer's Association.
In the end, it's all about preventing the next generation from watching their loved ones slip away because of this debilitating disease. "My kids ask me all the time, "Is this going to happen to you?" And I say, "I don't know. I'm hoping to find a cure,'" says Maria. "We're attacking this as a family."
You're never too young to start maintaining your physical and mental health to avoid getting Alzheimer's'a disease that can take 20 years to develop. And since, as The Shriver Report points out, Alzheimer's has been linked to type 2 diabetes, cardiovascular disease and depression, there's even more reason to stay healthy. Here are tips from the Alzheimer's Association for ways to keep your mind sharp and make Alzheimer's a disease of the past:
Exercise: Staying active increases blood flow. "The blood from your heart goes to your brain," says Alzheimer's advocate Maria Shriver. "Make them both healthy.'
Eat a low- and healthy-fat diet. Recommended foods include dark-skinned fruits and vegetables, and fish rich in omega-3s.
Stay socially active. Travel. Volunteer. "Keep yourself involved with people," says Maria.
Engage in mental challenges. "Do crossword puzzles. Learn a language," Maria advises. "Treat your brain like a muscle'work it, challenge it, grow it!"
For more information, visit the
Alzheimer's Association at www.alz.org.
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