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Neurology Now:
doi: 10.1097/01.NNN.0000279075.25251.19
Feature: David Hyde Pierce

Raise the Curtain: David Hyde Pierce shines a light on Alzheimer's disease.

GORA, SUSANNAH

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Susannah Gora's work has appeared in magazine such as Elle, Premiere and Woman's Day, and she is the writer and host of “Classics on Film,” a DVD series by Penguin Books.

For more information about Alzheimer's Disease, see RESOURCE CENTRAL on page 46.

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Abstract

It's like everyone is standing on the beach and there's a tidal wave coming. We're trying to get people to turn around and look.

A As the lovably quirky character Niles on NBC's hit sitcom Frasier, David Hyde Pierce won our hearts, not to mention four Emmys. Since then, the versatile actor has gone on to celebrated roles in films like Down With Love and Full Frontal and is currently starring in Curtains, a wry Broadway musical about love, murder, and…Broadway musicals.

But the comedian so talented at making us smile has known some very real pain of his own: He lost both his father and his grandfather to Alzheimer's disease and as a National Spokesperson for The Alzheimer's Association, Pierce is passionate about raising awareness of this disease that now affects 5 million Americans—a number that could easily triple by the year 2030.

The Alzheimer's Association recently launched a large-scale campaign to educate the public about the illness and seek more government funding for Alzheimer's research. Pierce, a trustee on the Association's Board, spoke with us about the new campaign, the effect the disease has had on his family, and why fighting to raise Alzheimer's awareness is his role of a lifetime.

NN As a national spokesperson for the Alzheimer's Association, you must be excited about the huge new campaign that's just been unveiled.

DHP I think it's important that it become huge. We need people to become aware so that they can become a voice for us and help move the government along in supporting Alzheimer's research.

NN Alzheimer's disease has affected you and your family in a very personal way, right?

DHP My grandfather's Alzheimer's was my introduction to the disease. We first noticed the symptoms back in the 1980s. It was a classic case in that my grandmother took care of him and also made sure people didn't know that something odd was going on. She would finish his sentences for him. It wasn't until his 85th birthday, when the family was gathered at a restaurant, that things became clear to us. He was looking at the menu and saying to his wife, “I'm not sure what I want. What do you think I should have?” And we got it all of a sudden, that he couldn't read the menu.

NN What had your grandfather been like before Alzheimer's took its toll?

DHP He was always very witty…not educated, but very smart. He was always playing on words, so he had the ability to give non-answers to questions. Later, this meant that you couldn't necessarily tell that anything was wrong.

NN Did you know that what your grandfather was affected by was Alzheimer's disease?

DHP We didn't know what Alzheimer's was. It wasn't in the news, and it certainly wasn't understood as well as it is now. The next time we were together with him was at Christmas of the same year, and the disease was clearly affecting things that he had been able to do. He'd been a great chess player, and he started not only losing at chess but moving the pieces in ways that they aren't allowed to move. He also loved boats and would build little models out of wood as well as full-sized rowboats and sailboats that he would actually take out on the Hudson River. My niece had gotten a very simple plastic boat model that they were working on together, and she became very upset because he kept trying to put it together in ways that didn't make sense.

The final serious warning signs were that he was starting to wander. My grandmother would have to call the emergency squad in town to find him because she didn't know where he was. Ultimately she was no longer able to control him, and so he went into a nursing home. She died of a stroke not long after that.

NN Alzheimer's has such an effect not just on those who suffer from the disease but on the people who love and take care of them.

DHP You can't underestimate the psychological trauma from having this person you care about—and your entire life together—disappear in front of your eyes. The statistics on illness and death of caregivers for people with Alzheimer's testify to what a destructive thing it is.

NN It seems that compared to many other diseases, Alzheimer's suffers from a lack of public awareness and understanding.

DHP When you've experienced the disease, when you have someone in your family with it or you know someone with it, you don't have to have it explained to you, how terrible Alzheimer's is. But it's not a “one-sentence disease.” It's not like bird flu, where you can describe it quickly and everyone gets panicked and says “Oh my God, we've gotta do something!” The repercussions—what I call the “collateral damage” of Alzheimer's on other family members, the economic costs, the costs on business—it's astonishing that this one disease has so much devastating power. There will come a time when we won't have to have a campaign like this, because so many people will have Alzheimer's, and so many people will be taking care of people with Alzheimer's, and the health care system will be completely [overrun]. But we don't want to wait that long.

NN I remember reading that if we don't have a cure for Alzheimer's within the next 25 years, it's going to ruin the health care system.

DHP: The majority of people at the highest risk are in their sixties, seventies, and eighties. We know how many Americans in the Baby Boom generation are going to be reaching that age, so we also know how those numbers are going to increase and what it's going to cost. It's like everyone is standing on the beach and there's a giant tidal wave coming, and we're trying to at least get people to turn around and look.

NN There's tons of buzz surrounding this new Alzheimer's campaign, which I understand is the Association's first paid campaign.

DHP It is, and there's a reason for that. It's always been very important for us at the Alzheimer's Association that the money we raise goes directly toward helping people, by funding research and lobbying efforts and by finding better ways of taking care of people. But we came to realize that raising public awareness, letting people know what this disease is, and what it isn't, and what a crisis we're facing, is as important as those other missions.

NN Tell me about the times you have testified in front of Congress to raise funding for Alzheimer's research.

DHP: I think I probably get more nervous doing that than I have ever gotten going onstage, because of what's at stake. My celebrity brings attention and cameras into the room. But the people who really carry the message are the researchers, caregivers, and now, more and more, the people suffering from Alzheimer's who speak.

NN That's because we're better able to diagnose the disease at an earlier stage, right?

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DHP That's right…These people are able to speak so eloquently about what's in store for them and their families. We just had an event at which a 51-year-old woman spoke, and she's in the early stages of the disease. It's not that it's worse for a younger person to get it than for an older person—it's terrible for anyone to get it. But the difficulty of getting people to understand what's at stake and what is lost with Alzheimer's disease is this: When you are looking at someone your age who has Alzheimer's—not an older person, not the stereotype we associate with the disease—suddenly you can put yourself in the place of a person with the disease. You realize that this is not about becoming forgetful; it's about having every part of your life taken from you slowly before you die from it.

NN I know your father also succumbed to Alzheimer's. Did he suffer from the disease for a long time?

DHP No. Our experience with my dad happened in a different point in the history of our understanding of Alzheimer's. Because of my grandfather, when my dad started showing the symptoms, we had a context. And because I knew about the Alzheimer's Association and had information, we knew what we were dealing with. But the prognosis was different.

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Figure. ON THE COUCH...
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NN In what way?

DHP Dad had undergone heart surgery, and he had a stroke while in recovery in intensive care, from a clot. He lost peripheral vision and had some memory problems and disorientation, but it started to clear up. He and my mom were living in my family home, and then in 1994 she was diagnosed with cancer and died very quickly. When she was gone, we saw that something else had been going on with dad. We found out how much she had been covering for him…

NN Like your grandmother had done with your grandfather.

DHP The same way. For example, she was starting to take care of the checkbook. And though dad was still going to work at the insurance company that he used to run, I think in many ways it was a courtesy, just to give him a place to go. He was afraid to go to church because he was a well-known person in our small town, and he was embarrassed to not remember people's names.

NN She'd been helping him hold it together.

DHP Yes, she could step in and say…

NN “Oh, you remember so-and-so…”

DHP Exactly. After mom was gone, our minister introduced us to a wonderful woman who would come by just to spend time at the house with dad. We wanted dad to be able to live in our home even though he was on his own, and he was fully functional at that point. She was a fabulous cook and would prepare meals for him with instructions for the microwave. But after a while he was unable to understand the microwave instructions, and she could only leave him alone for smaller amounts of time.

NN What did your family do?

DHP He lived with my brother and his wife and kids for a while. But the decline continued, and eventually he couldn't be left alone for five minutes without panicking. You'd leave a note saying “Dad—Gone to the store, be right back,” and you'd get back, and he'd be completely freaking out. So that meant my brother and his wife were missing work, or the kids were missing school, so that they could come back and make sure he was OK. So they found a great assisted-living place very near them.

NN How did that work out for your father?

DHP At this point, we had sold our family home, and we got some of the furniture and set it up so that it looked more or less like his living room. But the other great thing which we hadn't thought about was that my father was always very social, and because there were so many people around at the assisted-living facility, especially women—when you get to that age there are more of them—he would just sparkle. When he'd go to a meal with everyone he'd be “on,” and his spirits really lifted.

The last time I won an Emmy, I brought it to him and he said, “Oh gosh, I can't wait to show it to your mom,” which, weirdly, wasn't sad. Because it put him in a very good frame of mind: He thought he was going to show it to her, and that was OK.

NN Has the knowledge that your father and grandfather both had the disease inspired you to make changes in your own lifestyle?

DHP Having Alzheimer's in my family led me to the Alzheimer's Association, and my activity with them has given me exposure to all of this information about the latest research. So yes, because of that exposure, I try to keep healthy. I follow the idea of “What's good for your heart is good for your head”: that vascular health and brain health may be connected. That is the essence of this campaign that we're launching. Everybody needs to know this information, and everyone should also know that we're at a real turning point now in our understanding of Alzheimer's. We've got this research that is almost ready to propel us into better ways of treatment, and we need support to fuel that hope.

NN Are there any new advances in the field of Alzheimer's research that you're particularly hopeful about?

DHP There are nine treatments that are in phase three clinical trials, and some of these are not just to ease the symptoms. All we have now are a variety of drugs that slow or mask some of the symptoms and make functioning a little bit easier.

NN But they don't cure the actual process of Alzheimer's in the brain.

DHP No. Our hope, though, is really for prevention. It may be possible for people to regenerate brain cells, but it's probably better to stop Alzheimer's before, say, the memories of your life together with your spouse or your partner are taken away. But even if we can slow down the progression of the disease, then hopefully people will die of more “natural” causes, without Alzheimer's becoming so disabling.

NN In terms of prevention, you're reaching those 40- and 50-year-olds with your message, and now is the time that they can make lifestyle changes.

DHP Exactly.

NN Would you ever get genetic testing to find out if you could get Alzheimer's yourself?

DHP I don't think so, at least not right now because the genetics are inconclusive. There is a very rare gene which is extremely predictive of Alzheimer's, but that's a tiny percentage of the population. And although they've found certain indicators, they've also found that some people who have these indicators don't get Alzheimer's, while people who do get Alzheimer's sometimes don't have them. So this is yet another area where we need more research.

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Figure. BACK IN THE ...
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NN As an actor, what do you think about the portrayal of aging Americans, especially people with dementia, in film and television?

DHP Well, the good news and the bad news is that because Alzheimer's is more prevalent, it is also becoming more prevalent in our media. The television and movies reflect what we are interested in. Grey's Anatomy, The Sopranos—there are all these places where Alzheimer's and dementia are being presented with great understanding. It's not a joke. And there was a movie called Iris, with Judi Dench and Jim Broadbent, which was extraordinary. There are more. Through all those different means, not just through lobbyists and the Alzheimer's Association, people are becoming more familiar with it, and it allows people to talk about the disease.

NN Between your advocacy work and acting, your plate is quite full! So are you loving Curtains?

DHP It's unbelievably fun. It's a dream role, written with John Kander [Cabaret, Chicago], who is the heart and soul of American musical theater. We have a great company of talented people who are also fun and supportive. I play a Boston police detective who gets brought in to solve a backstage murder mystery, but they don't realize that he also has a secret love of musicals. So he not only tries to solve the crime, he also tries to fix the show before it goes to Broadway.

NN Do you have any specific advice about what kind of support is important for families to get?

DHP Contact the Alzheimer's Association. They have chapters all over the country, and they are almost completely staffed by people who are going through this or have been through it. The Association has a phenomenal array of resources: support groups, doctor references, a 24-hour hotline, and a new Web site (actionalz.org). The disease can be such an isolating thing, especially as a caregiver. You're so torn between your duties to this person you love, and your obligations to the rest of life—your children, your job—and you can't do it all. The most important thing is for people to understand that they are not alone.

©2007 American Academy of Neurology

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