Actor David Hyde Pierce felt helpless while watching two loved ones succumb to Alzheimer's disease. Here, he shares his family's struggle and why his advocacy work gives him new hope.
David Hyde Pierce still remembers his dad's reaction to his Emmy Award in 1995. "He said, 'Oh, I can't wait to tell your mother.' He was so happy about it, but my mom had passed away. I remember being struck by that and thinking, Well, that's absolutely fine. As far as he's concerned, she's still here."
It was, unfortunately, a familiar moment for the Frasier star. He had already watched his grandfather battle Alzheimer's disease, the most common type of dementia—a condition in which brain nerve cells die, causing changes in memory, behavior and thinking. And it was one of the experiences that turned David into a passionate advocate for the search to find a cure for the debilitating disease, which is the fifth leading cause of death among those 65 and older in the U.S.
A cruel disease
George Pierce, David's father, had heart surgery and suffered a stroke, which affected his memory, peripheral vision and judgment. He started to show signs of dementia, but David's mom, Laura, took over many of the tasks he normally handled. After Laura passed away a few years later, George moved in with David's brother and his family. Over time, George's condition worsened. "My brother or his wife would have to miss work or the kids would have to miss school because my dad was unable to be by himself for any length of time," recalls David. "They'd leave him a note that said, Dad, going to the store, be back in 20 minutes. He might have read it but would completely forget and be in a panic about where they were. Everything became a crisis."
When it proved impossible to care for George at home, the family moved him to a nearby assisted living facility. One weekend, George came down with the flu and passed away. Although David and his family were devastated, they were relieved that George still recognized everyone. "We knew what we'd been spared," he says.
That's because David's maternal grandfather, Rod, had suffered from Alzheimer's as well. David's grandmother, Mildred, tried to care for him at home. When he began wandering out of the house, Mildred was forced to move Rod to a nursing home. David still grieves for his grandparents' emotional loss. "To be married for 50 years and…to have your spouse not know who you are and become belligerent day after day with no letup—that's quite a cruel form of torture," he says.
David will never forget the visits he had with Rod toward the end of his life. "He was a witty man and had a lot of dignity," the actor says softly. "Seeing him with his arms strapped to the wheelchair to restrain him, staring blankly at a book of construction paper flowers and animals that some generous kid had made for the people at the nursing home…. I don't know if I have words for what that does to you. You feel so helpless and hopeless." Fortunately, that feeling faded when David decided to turn his grief into action.
David has made it his mission to spare other families the anguish of losing a loved one to Alzheimer's disease. For more than 15 years, he has been a passionate spokesperson and honorary board member of the Alzheimer's Association (AA), a nonprofit group that promotes Alzheimer's research. In 2010, he urged lawmakers to support the National Alzheimer's Project Act, which passed last year. Its goal is to create a strategic plan to prevent Alzheimer's disease by 2025. He also represents caregivers as a member of the U.S. Department of Health & Human Services' Advisory Council on Alzheimer's Research, Care and Services. "Being part of the fight is what has healed me the most," says David. "The reason I continue working with the AA is that I…get to see the progress being made [by researchers], and I see new stories of hope."
David's top Alzheimer's caregiving tips
In 2011, 15 million people provided unpaid care to loved ones with Alzheimer's and other forms of dementia, according to the Alzheimer's Association (AA). More than 60% of caregivers rate the emotional stress as high, and one-third report symptoms of depression. Here's how you can minimize any stress and give your loved one the best care possible:
1. Take advantage of an early diagnosis.
Devastating as it may be, an early diagnosis means your loved one can make crucial decisions before the disease starts to take a serious toll. "People…can plan things they've always wanted to do," says David. "They can also plan for the end—whether it's financial planning or medical choices."
2. Know that Alzheimer's affects everyone differently.
"There's an expression we have: If you've seen one Alzheimer's patient, you've seen one Alzheimer's patient," says David. "Even though the general pathway of the disease is the same, how it progresses and the way it affects people can be wildly different."
3. Don't be afraid to get help.
"[Alzheimer's disease] is terrifying, and people are sometimes so afraid that they don't talk about it," says David. "I think there's a big fear of being isolated socially." Reach out to the AA (alz.org) or the Us Against Alzheimer's Network (usagainstalzheimersnetwork.org).
Photo: David Hyde Pierece (left) with his father, George