Battling Alzheimer's disease is often a private struggle, with few champions who speak on behalf of patients and their loved ones. But the family of R. Sargent Shriver, who died Tuesday, helped shed light on the disease and spur support and research for its causes.
Since his diagnosis in 2003, the family of the influential public servant and founder of the Peace Corps had sought to change the public perception of people with Alzheimer's so they would not be viewed as victims, said geriatrician William Thomas, professor at UMBC's Erickson School of Aging.
"Instead, he was a person living with Alzheimer's, and that's an absolutely crucial distinction," Thomas said. "What the Shrivers were about were sort of normalizing this disease. It is important for people of stature, like the Shrivers, to step into the light and to be seen and to tell their story, because so many other people feel like they can't do that."
Thomas calls Alzheimer's a "silent epidemic." The number of people with the disease is growing, but they are often an invisible group, living many times in nursing homes, away from society at large.
The Shriver family's deep involvement with Alzheimer's advocacy elevated the visibility of the disease. Shriver's daughter, the TV journalist and former first lady of California, Maria Shriver, wrote a book, "What's Happening to Grandpa," explaining the disease to children, and donated its proceeds to the Alzheimer's Association.
She was also an executive producer of HBO's 2009 documentary series, "The Alzheimer's Project." It includes a segment for children whose families are dealing with the illness. It was called, "Grandpa, Do You Know Who I Am?"
She also published "The Shriver Report: A Woman's Nation Takes on Alzheimer's." The 2010 study details the $300 billion-a-year impact the illness is having on the nation, and especially on women, who constitute 65 percent of its victims, and 60 percent of caregivers.
In a May 2009 interview with Larry King on CNN, Maria Shriver said her father no longer recognized her.
"I introduce myself to him every time I go visit him," she said. "I say, 'Hi Daddy. I'm Maria, and I'm your daughter.' And he says, 'You are. Oh my goodness. That's so great. Glad to meet you.' "
"It teaches you … to live in the moment, to accept the person who's sitting right in front of you, and to stop wishing that some things were different," she said.
The Shrivers' vocal campaign came on the heels of a very public discussion of Alzheimer's that followed the diagnosis of President Ronald Reagan, said Dr. Paul Fishman, director of the Alzheimer's Center at the University of Maryland Medical Center.
It was Reagan's diagnosis that set the precedent for public figures coming out and saying they were affected by the disease.
For years, few public figures were willing to be forthcoming about the illness, he said.
"It's a horrendous disease that takes away your intellectual abilities," he said. "So many people were stigmatized. You were losing something so vital to your public life — your intellect — so many of them concealed it."
Advocacy is crucial in improving diagnosis and encouraging research, he said. While great strides have been made in understanding the biology of the disease, so much is not known about Alzheimer's. Researchers don't understand fully what causes it and there is no cure. Screening and diagnosis are often poor, said Fishman.
For years, Alzheimer's was simply known as senility, said Thomas. In fact, many physicians today tend not to use the word Alzheimer's, favoring vague terms like "senile" and "demented," said Fishman. That's a huge barrier to diagnosis and getting people treatment that could help, he said.
"The advocacy shows this is a common disease and we need to screen for it," he said.
Baltimore Sun reporter Frank D. Roylance contributed to this article.