It was 2003 and Maria Shriver had begun her tenure as first lady of California when her father, Sargent Shriver — U.S. ambassador to France, 1972 vice presidential candidate and the first director and co-founder of the Peace Corps — was diagnosed with Alzheimer’s, a ravaging brain disease that, according to statistics procured from the Alzheimer’s Assn., affects some 5.8 million Americans and 50 million individuals globalwide. Sargent Shriver died of the disease in 2011.
While societal awareness of Alzheimer’s has grown over the past several years, at the time of her father’s diagnosis, Shriver, selected as Variety’s Entertainment Philanthropist of the Year for her role as founder of the Women’s Alzheimer’s Movement (WAM), was left muddling through a morass of unanswered questions. Doctors, neurologists, scientists — they were conducting clinical studies on Alzheimer’s. But there were gaping holes in what conclusive facts that research had thus far yielded. In 2003, Alzheimer’s remained very much a misunderstood, underfunded and underpublicized disease. This was maddening to Shriver, a seasoned investigative journalist whose notable career — from her days as network news weekend anchor and correspondent to her her award-winning reports on “Dateline NBC” to her special anchor post on “NBC Nightly News” — embraced the dogged pursuit of truth.
“The more I questioned as a journalist, as a daughter, as a woman, the more I found that I had to really chart my own path there,” says Shriver. “I looked for a children’s book about it so I could explain what Alzheimer’s was to my kids. I couldn’t find one, so I went and wrote one.”
“What’s Happening to Grandpa?” was published in 2004 and became an instant bestseller. In 2009, Shriver earned two Emmy Awards for co-producing the five-part HBO documentary series “The Alzheimer’s Project.”
“Thus began my foray into trying to understand the Alzheimer’s space,” says Shriver.
Driven and determined, Shriver drew on her platform as first lady of California to do whatever she could to educated about Alzheimer’s and debunk the myths surrounding the disease. She organized a women’s conference on the subject and was conducting breakout sessions for caregivers of Alzheimer’s patients when she discovered that an inordinate amount of women — more so than men, it appeared — were stricken with the disease.
“More and more women came up to me and said, ‘Thank you for doing this, my mom has Alzheimer’s,’ ” says Shriver. “And I thought, there are a lot of women with Alzheimer’s. And so I would ask all the doctors that I was meeting, ‘Why is it that I think there are more women than men with Alzheimer’s?’ And the doctors would answer, ‘No, no, that’s just not the case. You just think that because women live longer.’ And whenever people in my life have told me, ‘No, you just think that,’ I’m like, ‘You know what? I don’t think so.’ So I decided to research and find out.”
At the time, Shriver was acting as caregiver not only to her father, but also her mother, Eunice Kennedy Shriver — founder of the Special Olympics and lifelong advocate of children with disabilities — who had suffered a series of strokes. It was Eunice, says Shriver, who equally inspired in her the drive and passion to seek out definitive answers about women’s brain health.
“I’m an only girl, with four brothers, and I grew up with a mother who always stressed to me the importance of my brain over my looks,” says Shriver. “It was a funny thing where people would always come up to me when I was little and say, ‘Oh my God, you’re so beautiful.’ And [my mother] would rush over and say, ‘Your looks are going to go, focus on your brain. I want you to work on your brain.’ That was my mother’s message to me as an only girl. ‘You need to be smart. You need to be strong. You need to be confident. You need to be competitive.’”
Shriver has been just that. In October 2009, along with the Center for American Progress, Shriver published “The Shriver Report: A Woman’s Nation Changes Everything,” a comprehensive study on the state of women in the United States workforce, the first of its kind since 1963.
Then, in October 2010, Shriver, in conjunction with the Alzheimer’s Assn., released “The Shriver Report: A Woman’s Nation Takes on Alzheimer’s.”
The report’s most stunning takeaway: 3.6 million American women are diagnosed with Alzheimer’s each year, a ratio far greater than that of men. Globally, two-thirds of those diagnosed with Alzheimer’s are women. Two-thirds of those acting as caregivers for patients with Alzheimer’s are also women.
“In the end, we reported to the nation for the first time that Alzheimer’s did, in fact, discriminate against women,” says Shriver. “And it wasn’t because women were living longer, but because of many factors, one of which is that women age differently. And with that realization, my whole world kind of came together and broke apart at the same time. And then I started asking more questions.”
One glaring fact Shriver discovered: historically, women were not part of Alzheimer’s research. In fact, they hadn’t been included in the large majority of clinical trials across the board.
“Women haven’t been a part of any medical research,” notes Shriver. “And so this kind of singular question became a bulldozing of this new trail to try and understand how women age, to study women’s brains as they age, to look at women in their 40s, 50s, 60s. We knew that Alzheimer’s is in the brain 20 years before symptoms, so I started doing the math. And I thought, ‘OK, if women are 70, what’s going on when they’re 50?’ And that’s why I started the Women’s Alzheimer’s Movement — to really focus and drill down on the issue of why?”
Founded in 2010, the movement is the only organization of its kind, its pointed mission to unearth why Alzheimer’s discriminates against women — namely women of color — and to educate, raise awareness, support fundraising efforts and advocate for the prevention of the disease.
“Our goal is to fund research so we can give people the answers, to focus scientists and researchers and doctors on the concept of women aging, the concept of women’s brains, how menopause, perimenopause, how whether or not women work or don’t work, whether or not women have access to health care — how all of this impacts the rates of Alzheimer’s in women,” says Shriver.
One fact we now know: Every 65 seconds a brain develops Alzheimer’s.
“More and more people are being diagnosed, and at a quicker rate because we have more and more people getting older,” says Shriver. “We are a graying nation, and most people don’t think about that.”
Richard Isaacson, director of the Alzheimer’s Prevention Clinic, associate professor of neurology and director of the Neurology Residency Program at Weill Cornell Medicine and New York-Presbyterian Hospital, has worked alongside Shriver over the past five years, receiving research grant support from her movement and serving as a member of its Scientific Advisory Board Council.
“Maria has changed the way that I think about Alzheimer’s,” says Isaacson. “I met her about five years ago and she kept asking me these probing questions and I kept on doing the typical dancing-around-it thing, saying, ‘Well, we don’t know.’ And she would not accept ‘we don’t know’ as an answer. Fast-forward the clock five years and her foundation and her work has pushed me to think about things differently. And now I can answer that question she asked me: Why do women get Alzheimer’s more often than men?”
While age is the No. 1 risk factor for Alzheimer’s, a host of various biological factors play into whether someone develops the disease, and to what extent the disease takes root. Those risk factors, explains Isaacson, include, but are not limited to, menopause and perimenopause, genetics, widowhood, high cholesterol, heart disease, diabetes, high blood pressure, stress and stroke. Belly fat is also a considerable risk factor, with abdominal obesity increasing a women’s risk of developing Alzheimer’s by 39%.
“As the belly fat gets larger, the memory center in the brain gets smaller, and people don’t think about that, especially in women,” says Isaacson.
“Women’s brains and men’s brains are different and there are very specific biological factors that are different in women versus men,” he continues. “We’ve written papers on brain imaging studies and, looking at men versus women, you can compare the two and you can see a change in brain function. Women also have different types of stressors in life — sleep deprivation, for example. Before I met Maria, I didn’t think about Alzheimer’s very differently in women versus men. But now I ask women, ‘OK, tell me about your perimenopausal symptoms, do you have sleep trouble?’ Now I treat women differently. I think Maria’s work, without alliteration and without hyperbole, changed the way that I can [treat] patients and impacted Alzheimer’s in a positive way.”
Because of Shriver, Alzheimer’s has gone from a topic that most people refused to openly talk about — brain cell death and the subsequent loss of cognitive function aren’t exactly fodder for jovial party chatter — to a subject that has fielded wide-spanning media attention on the national and international fronts. Because of Shriver, Alzheimer’s is a word that is no longer taboo.
“Maria was raised to think of others first, and she has spent her life using her voice to champion the rights and dignity of those facing personal challenges,” says Oprah Winfrey. “I am in awe of her tireless energy, passion, and devotion to her philanthropic efforts, particularly around raising awareness and supporting families with Alzheimer’s.”
To wit, Shriver and WAM have held Alzheimer’s summits and conferences around the world attended by thousands of doctors and neurologists and scientists. Shriver was an executive producer on the 2014 film “Still Alice,” for which Julianne Moore won the Oscar for lead actress, playing a linguistics professor stricken with Alzheimer’s. In 2019, Gov. Gavin Newsom appointed Shriver task force chair of the California Task Force on Alzheimer’s Prevention and Preparedness.
While Isaacson points out that “somewhere between 40%-50% of Alzheimer’s cases may be preventable,” in the remaining cases there is still a chance to delay the onset, little by little, be it by five, 10 or possibly 15 years.
“So much of my work is about awareness, prevention, funding of research and trying to educate people about something they think they don’t have to worry about until they’re 80,” says Shriver. “And I keep trying to explain that that’s not right. You need to think about your brain when you’re 30, when you’re 35, when you’re 40. You need to think of it as a muscle or an organ. It’s the most valuable resource that you use all the time and you never think about until you’ve lost it — until it’s gone.”
Shriver has spent the past 10 years embarking on what she calls “A Mount Everest of an expedition” trying to encourage women to sharpen and preserve their brain function — through everything from exercise to meditation to sleep and nutrition — as much as they possibly can.
“After 60, a woman has a one in five chance of developing Alzheimer’s,” says Shriver. “I use statistics to inform, not to terrify. But I do use them to get your attention. I’m trying to shout in people’s ears, that thing that you’re using all the time, I want to talk to you about it, I want you to feed it, I want you to nourish it, I want you to be aware of it, I want you to understand it. I don’t want to scare you to death. I want to wake you up and I want you to get going. This is a drum you have to keep banging.”
To this end, in May, WAM opened the first Women’s Alzheimer’s Movement Prevention Center with the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas. Here, women come to be evaluated for their risk of Alzheimer’s and are assigned a medical plan to help reduce the likelihood of developing the disease. The Center expected 500 patients in its first year; 500 people showed up on the first day.
Jessica Caldwell, director of the Women’s Alzheimer’s Movement Prevention Center and research grant recipient, has focused her work on sex differences in Alzheimer’s disease as it relates to biomarkers, various indicators of the disease ranging from the amount of protein in the blood to the size of one’s hippocampus. It’s Shriver whom she credits with helping to reduce the stigma surrounding the disease.
“Decades ago, if a loved one got dementia, they were often hidden away, and that shame-oriented thinking around dementia is still out there,” says Caldwell. “It’s not something we want to bring up, it’s too negative, and I think that’s supported by the fact that we don’t have a cure yet. And that’s another reason that the work Maria has done over the past 10 years is so important. And it really comes down to her focusing on three different areas: raising money to jump-start research programs, donating her talent and time to educating people about the disease, and supporting women’s career development. One of her goals is to foster collaboration between scientists and that kind of collaboration is priceless.”
Lauren Miller Rogen, actress and co-founder with husband Seth Rogen of the Alzheimer’s philanthropic organization Hilarity for Charity, calls Shriver “a trailblazer.”
“Maria Shriver has spearheaded a movement into what was once uncharted territory: women and Alzheimer’s,” says Miller Rogen. “Her quest to discover why two out of every three brains that develop Alzheimer’s belong to a woman has already made an insurmountable impact for women and for the Alzheimer’s movement.”
Since March when COVID-19 shut down most of the U.S., according to analysis of federal data by the Washington Post, over 134,200 people have died from Alzheimer’s and other forms of dementia — 13,200 more deaths than anticipated — WAM’s work has grown increasingly urgent.
“More than half the COVID-19 deaths in California have been in nursing homes, and that’s a travesty,” says Shriver. “Most people don’t think of California as an aging state — and it is. So what does that look like for California? What does that look like for every other state? With more and more people getting Alzheimer’s, who is going to take care of them? These are all the issues that I am working on, thinking about, trying to be creative around. These are the issues that people don’t often think about until they are in the middle of them, and then when they are in the middle of them, it’s like getting hit by a Mac truck. They’re stunned there aren’t more resources. They’re stunned at how expensive it is.”
“We prize youth, youth is what the United States is about,” continues Shriver. “But we are changing that. We need to be able to say, ‘Look I’m 64 years old, I’m vital, I’m working, I’m engaged, I’m energetic. We need to shine a light on people like Dr. Fauci, who’s 79 years old and as sharp as they come. We need to focus on the fact that there are a tremendous number of incredible, older leaders in all areas of professional life. Warren Buffet, Fauci — people for whom age is not a number. That’s what we all want to be. We want to be of sound body and sound mind for as long as possible. That’s where I want to be, that’s where I want others to be. And that’s why I’m working to find a cure for Alzheimer’s.”