Maria Shriver: Living with Alzheimer's in the Family

May 8, 2009 — -- California first lady Maria Shriver said that her children taught her the most about interacting with her father, Sargent Shriver, who has Alzheimer's disease.

"My kids dealt with the person that was sitting in front of them. Like, 'What are you doing, Grandpa?' And, 'What are you doing today?' And they didn't get into who my father was. They just got into who he was then. And I think that was a very valuable lesson to me," Shriver told "Good Morning America."

"Accept the person that's sitting in front of you. Stop trying to make them who they were. Let it go," she said.

Diagnosed with Alzheimer's disease six years ago, Sargent Shriver, 93, has motivated his daughter to get involved with an upcoming four-part HBO documentary, "The Alzheimer's Project."

Shriver hopes that the documentary will help lift some of the fear, shame, guilt and confusion that surround the disease.

While Alzheimer's is the sixth leading cause of death in the United States, a study by the MetLife Foundation found that people over 55 fear Alzheimer's more than cancer, diabetes or stroke.

"If Alzheimer's comes into your family, it doesn't just affect the person who gets Alzheimer's. It affects everybody, on every level. ...The cost of it. The emotional wear and tear," Shriver said.

Forgetting a Face

While her face may be recognizable to millions of Americans, when Shriver visits her father, he has no idea who she is.

"I think you have to recalibrate yourself every single time you see your father, and you have to introduce yourself to him," Shriver told "GMA" today.

When she walks into his room, Shriver must tell her father that she is his daughter and that her name is Maria.

"He'll go, 'Oh, my goodness, you are?'" she said.

She has become so passionate about the effects of Alzheimer's that she even testified before Congress. Afterward, she said her office was inundated with letters from people who relate to what's happening to her family and her father.

"At the age of 93, my dad still goes to Mass every day. And believe it or not, he still remembers the Hail Mary. But he doesn't remember me, Maria," she said before Congress last month. "I'd be lying if I didn't admit that still makes me cry."

Shriver said she wants to tell her father what's going on in her life but can only support him and make him comfortable.

She said she's realized that all she can do is love and accept him for who he is now, not who he was or who she wants him to be.

"And that's a pretty good lesson for life in general," she said.

Shriver, who was the co-executive producer on "The Alzheimer's Project," which begins airing on May 10, said she hopes the documentary will reach a broad audience in tackling topics like memory loss, living with Alzheimer's disease and the science of finding a cure.

The Future of Alzheimer's

Someone gets Alzheimer's disease every 70 seconds and, currently, 5.3 million people in the United States live with the condition, according to the Alzheimer's Association.

The fight to learn more about the disease and pinpoint a cure has become more fevered as millions of baby boomers march toward their senior years. It all adds up to a heavy burden on the health care system.

The direct and indirect costs of Alzheimer's disease and other dementias to Medicaid and Medicare amounts to more than $148 billion annually, according to the Alzheimer's Association.

The financial burden also falls to those caring for an Alzheimer's patient.

Dr. Richard Hodes, director of the National Institute on Aging, told "Good Morning America" that the disease is much more than forgetting a friend's name momentarily or misplacing the car keys.

It's time to worry, he said, "when memory becomes more difficult, when it becomes persistent, when it interferes with life functions."

Hodes said he's expecting some kind of major breakthrough on how doctors understand Alzheimer's in the next year or so.

Click here to get your questions answered at the ABC News OnCall+ Alzheimer's Center.

Alzheimer's Association CareSource offers resources to help manage caregiving responsibilities, such as financial decisions and skills for caring for loved ones every day.

On the organization's Web site, you can find message boards, create a calendar to keep track of tasks with your family, and locate assisted living facilities in your area.

The Alzheimer's Association offers a Doctor's Appointment Checklist to help family members prepare for effective doctor visits and keep track of questions.