“It was very difficult when my dad didn’t know who I was,” says Maria Shriver. Her father—the politician Sargent Shriver, who was the brother-in-law of President John F. Kennedy and founder of the Peace Corps—was diagnosed in 2003 with Alzheimer’s disease, which ravaged his once brilliant mind until he could no longer recognize his own daughter. “It’s a challenge when you’re sitting across from a parent who keeps asking, ‘What’s your name? Do I know you?’”

Part of the narrative

This heartbreaking situation is familiar to the millions of people who have cared for a loved one suffering from Alzheimer’s disease, a neurological condition that interferes with thinking and memory. The most severe and common form of dementia, it steadily worsens over time, until the sufferer can no longer follow a conversation, recognize his or her environment, or perform daily tasks like bathing, getting dressed and even going to the bathroom. “I learned to go with whatever conversation he was having with me,” Shriver says of her father, who died in 2011, “and just enjoy him for who he was in that moment.”

But as Shriver made peace with her father’s diminished mental capacity, she declared war on the disease that caused it. For more than a decade, Shriver has been a powerhouse in the fight against Alzheimer’s, leveraging her public platform as an NBC news anchor and member of the Kennedy clan to “change the narrative” about Alzheimer’s from one of hopelessness to hope.

The Alzheimer’s Association estimates that the disease currently afflicts about 5.4 million people across the U.S., including one in nine people over the age of 65. That number will likely triple by the year 2050 as the Baby Boomer generation ages. Because sufferers often require round-the-clock care, the disease takes an enormous economic toll. In 2016, Alzheimer’s and other dementia diseases will cost $236 billion across the U.S.. This doesn’t include the exhausting work of people who care for a sick spouse or parent themselves, equal to more than 18 billion hours of unpaid labor in 2015, according to the Alzheimer’s Association. “It’s a crisis and an epidemic,” says Shriver. Yet there is no cure.

“Shriver points out that funding for all aspects of Alzheimer’s research—for finding a cure, finding new treatments that slow its progress and finding better medications to lessen its symptoms—is woefully inadequate.”

Rewriting the narrative

When her father was diagnosed with Alzheimer’s, Shriver knew very little about the disease. “I’d heard that former President Reagan had it but didn’t know much else,” she says. “Lo and behold, nobody else did either, so I started asking questions.” This led her to write the children’s book, “What’s Happening to Grandpa.” “It was a way of explaining the disease to myself and to my children,” Shriver says. Inspired by the positive response to the book, she approached HBO about making a documentary. That gave birth to “The Alzheimer’s Project,” an Emmy-winning four-part documentary series created in partnership with HBO, the Alzheimer’s Association and the National Institute on Aging, with Shriver as executive producer.

Next, she launched the 2010 study, “The Shriver Report: A Woman's Nation Takes on Alzheimer’s” in collaboration with the Alzheimer’s Association. “It was the first time any reporting had been done to isolate Alzheimer’s as a women’s disease,” Shriver says. “Why was it that two-thirds of the brains diagnosed belong to women?”

She continues, “The majority of caregivers in the country were also women. So Alzheimer’s had huge economic consequences for women as well as being a health issue.” 

As the daughter of an Alzheimer’s victim, Shriver is especially passionate about the needs of caregivers. “It’s okay to ask for help,” Shriver says. “There are many caregiver organizations and support groups. It’s important for people in those situations to build their own village of people they can turn to.” If the burden of caregiving becomes overwhelming, Shriver says, “It’s important for us not to judge. People end up putting loved ones in assisted living facilities because they can’t handle it anymore. It’s a 24-hour-a-day job, and we shouldn’t judge them as people who don’t love their family.”

Shriver helped shed light on another aspect of Alzheimer’s as executive producer of the critically acclaimed movie “Still Alice,” which stared Julianne Moore in an Oscar-winning performance as a brilliant professor fighting early-onset Alzheimer’s. “I think ‘Still Alice’ changed the portrait of the person getting Alzheimer’s from a 90-year-old in a nursing home,” Shriver says. “Some people think Alzheimer’s is a natural part of aging. It’s not. When [audiences] saw someone in her 50s who was struggling with her mind, that both moved people and scared them.”

Acting on the narrative

The message that Alzheimer’s is not just a problem for the elderly dovetails with Shriver’s partnership with Equinox Fitness Clubs, which sponsored “Move for Minds” events in six cities this past Spring. “It’s taking the discussion of Alzheimer’s into gyms where people are into their health—in every sense of that word—and re-marketing it as something people in their 40s, 50s, even their 20s and 30s, should be aware of.” Shriver says. “People struggle with ageism. They struggle with the hopelessness or fear of losing your mind.”

Instead of giving in to that fear, Move for Minds helped educate people to take a proactive approach. “Cardiovascular health is directly tied to brain health,” Shriver says. “What’s good for the body is good for the brain.” Participants had the opportunity to take fitness challenges and learn about nutrition, meditation and sleep practices that promote brain health from scientific experts.

The Equinox partnership was part of the Alzheimer’s Women’s Challenge, an initiative Shriver is leading that raises money for gender-specific research on women’s brains. Shriver points out that funding for all aspects of Alzheimer’s research—for finding a cure, finding new treatments that slow its progress and finding better medications to lessen its symptoms—is woefully inadequate. “Cancer and AIDS receive $5 billion and $6 billion [respectively] from the National Institutes of Health, but Alzheimer’s research receives only $800 million,” Shriver says. “That’s just not enough money. I think we can do better. We’re challenging ourselves, our families and the world the find a cure. If we come together, we have a solid chance of defeating it.”