Oct. 15, 2010 -- It's been a year since Maria Shriver, California's first lady and perhaps its best-known women's advocate, released The Shriver Report: A Woman's Nation Changes Everything. The landmark study examined how Americans live and work now that mothers are the primary or co-breadwinners in nearly two-thirds of U.S. families, and the far-reaching effects of these shifting roles.
This week, the sequel is here: The Shriver Report: A Woman's Nation Takes on Alzheimer's. It focuses on the impact of the Alzheimer's epidemic, talks about cutting-edge research, includes personal essays by celebrities, patients, and caregivers, and reveals the results of a large-scale poll on Alzheimer's.
The puzzling, frustrating brain disorder now affects 5.3 million Americans and may affect 16 million by 2050. Sixty-five percent of those with Alzheimer's are women, and women are also more likely than men to be caregivers for someone with the disease.
''This is a nationwide epidemic, and women are at the epicenter of it," says Shriver, who was an executive producer for The Alzheimer's Project documentaries that aired last year on HBO.
According to the poll, which gathered information from 3,118 adults nationwide, including more than 500 Alzheimer caregivers:
- 60% of Alzheimer's caregivers are women.
- Of those women, 68% report they have emotional stress from caregiving.
- Nearly half of these 68% rate their stress as a ''5'' on a scale of "1" to "5."
- 57% of all caregivers, including 2/3 of the women, admit they fear getting Alzheimer's.
- 4 in 10 caregivers say they had no choice about their new role.
For Shriver, 54, fighting the epidemic is intensely personal. Her father, politician Sargent Shriver, the first leader of the Peace Corps who was also active in his late wife Eunice Kennedy Shriver's Special Olympics, was diagnosed with Alzheimer’s in 2003. He is now 94.
This week, Shriver talked to WebMD about how far she's come since the diagnosis, the momentous tasks that lie ahead, and her own fear that she, too, will get Alzheimer's.
Q: Can you tell us how the new report came to be?
A: I think I had been researching, studying about Alzheimer's since my dad was diagnosed in 2003. But I did not understand that women were really at the epicenter of it because of looking into it from my father's point of view.
[Then came the HBO documentaries.] More and more women started coming up to me, and saying, "I know you have a dad with Alzheimer's, my mom has Alzheimer's. I'm a caregiver and I'm also working full time. Do you have any ideas? Do you have any ways I can get help?"
So everywhere I went, suddenly someone was caring for an elderly parent. So we focused on Alzheimer's because the caregiving of Alzheimer's is the most time intensive, emotionally intensive and also expensive. ... It's really expensive to have a parent with Alzheimer's. It disrupts your entire family, it changes your life. In the poll, two-thirds of those polled said they had to come Iate to work, change their work schedule, or leave work altogether to care for somebody with Alzheimer's.
Q: You say women are at the epicenter of the Alzheimer's epidemic. Could you talk about that and how it is affecting society?
A: I think it's affecting society in every way. The facts are that women have more Alzheimer's [than men do] and are doing the lion’s share of caregiving. Those are millions and millions of women. Women who have to put food on the table, who have to raise the next generation while taking care of the last generation, [who] are under duress.
Men and women in this country are going to have to care for parents who get Alzheimer's and other diseases. Businesses have to be prepared. Companies that have seen this coming and work with their employees are more successful than those who don't.
In the report, it shows that two-thirds of the people polled said they had not been able to get time off for elder care, that it was easier to get help for child care, that they had to either come in late, change their job, or take a leave altogether.
The Social Security system the way it is now doesn’t recognize women or men who take time off to do caregiving. The child care tax credit allows you to spend pretax money on child care, but doesn't allow you to do it on elder care.
The vast majority of Americans have no long-term health care plan, no long-term disability plan, and they have not sat down as a family to discuss with their children how they want to be cared for or whose responsibility is it, and how is that going to work [if Alzheimer's is diagnosed]. So very often it falls on a daughter's shoulders. Many of the women polled said they really had no choice about being a caregiver.
So just as I coined the term last year ''a woman's nation,'' we are also becoming a caregiving nation and we don't have the backup for that. We don't understand it, we don't support it, and we don’t have laws to protect it.
Q: Can you take us back to the moment -- or series of moments -- when you decided to ''go public'' about the diagnosis of your father and to become an activist for Alzheimer's disease?
A: It was something my mother and brothers and I came to. We came to his diagnosis rather slowly and then the realization of his diagnosis, not really understanding what that meant for his future or ours.
He wrote a letter about getting Alzheimer's and what it meant for him. My father was always the best letter writer I'd ever met. And he wrote all his own speeches and so he was a beautiful, beautiful writer. So when he wanted to write the letter, it seemed like a natural thing. ... [The family distributed it to colleagues and friends, as requested.]
I had written already two children's books, one on heaven and one on people with disabilities, and I decided to write one on explaining Alzheimer's to my children and to other young children that I thought would have to come face to face with Alzheimer's. It was a relief to speak about it, because I think it's always a relief to come out from behind what you might think of as a secret or shadow or something that people are thinking but they don't really know.
And then it's been a slow progression. I did The Alzheimer's Project [for HBO] a year ago and that took really two years of work. Now I've done this and I've testified for increased funding for Alzheimer's on the Hill.
Q: Caregivers are already overburdened, but is there something a caregiver can do to help society as a whole deal with Alzheimer's, a small step that wouldn't take much time but would make an impact?
A: I think the first thing caregivers should do is get help for themselves. Join a support group, find out how other people do it. There are caregiver groups all over this nation now.
People need to step in and spell people [who are caregiving]. Let them go exercise. They also need to understand if they aren't in good shape, the person they are caring for won't be in good shape. I think that's very hard for most women, to put themselves front and center.
But what we know is, caregiving is hazardous to your health unless you take care of your health.
I think that women can make their voices heard at the polls. They should be voting for those who have smart family work policies, who understand the changing dynamic of the American family. Less than 20% of families now have a stay-at-home parent, and women are the primary breadwinner or co-breadwinner in two-thirds of American families.
So the American family has changed dramatically and we need to understand that women make 80% of the consumer decisions. Women are the economic engine of this country and we are also the political engine. We put people in office and we can take them out.
Q: What keeps you going on this mission?
A: Well, I'm terrified of getting Alzheimer's. And I don't want to put my kids in that place.
I'm fascinated by the brain ... how it works and dominates your life.
I think that to learn about what's being done, to go into these labs, talk to these people studying the brain, and get them to speak in commonsense English, is fascinating.
I'm the latter end of the baby boom generation ... this is our epidemic. We've done all these things to make our lives last longer, but not our brains.
Q: Back to the terror -- how do you deal with that?
A: I'm an advocate. I'm focused. And I try to live a life that is helpful either to finding a cure, rallying people, making it matter. I try to live each day the best I can, make the choices in my life be about something that's meaningful, and try to work as hard as I possibly can to encourage people in power to look at this and help to find a solution. Not just for me but for the millions and millions of other women who are like me and the other families who are like mine -- and who don't have the resources that I do, who don't have the ability to do a report that I do, who don't have a job that allows some flexibility, like I do.
Q: Your dad's 95th birthday is this November. Is he aware of that?
Q: That must be hard.
A: Yes. I think the whole thing is hard. That's why I call it mind-blowing. It's blowing the mind of the person who gets it and everybody near them. ... It's a hard disease to explain and to take in every single time you deal with it. It is an emotional challenge, it's a financial challenge, it's a spiritual challenge.
But there is hope, and I think that's the most important thing. And I think the more we talk about it, the more it comes out of the backroom and into the front room.
Spending money on Alzheimer's is not taking money away from something else, because the study of the brain is [bound to] unlock and help lots of other diseases.