David talks Alzheimer’s on PBS

David appeared yesterday on Life (Part 2), a PBS series focusing on the lifestyles of the Baby Boomer generation. In the episode ‘The Science of Happiness’, David spoke about his family’s experience with Alzheimer’s. You can watch the episode HERE. It’s touching stuff. If that doesn’t work for you, there’s also a transcript:

Robert Lipsyte: And now, being positive in the face of unhappiness. Actor David Hyde Pierce won four Emmys for his work on Frasier and a Tony for his work on Broadway. But he really should win an award for his work on behalf of the Alzheimer’s Association. David’s father and grandfather both suffered from dementia. Their caregivers, his mother and grandmother, gave out and predeceased their husbands. David brings a compassionate understanding of how far we’ve come in the battle against the disease and how far we have to go. David Hyde Pierce, thank you so much for joining us on Life (Part 2).

David Hyde Pierce: Glad to be here, thanks Bob.

RP: Your own involvement seems so personal. Could you describe how Alzheimer’s got to you?

DHP: Yeah, that’s a good way to put it. It got to me originally through my grandfather, my mom’s dad, and this was back in the late eighties and at that point, he started showing signs of very strange behavior and memory loss. We as a family noticed it probably around his 85th birthday. I now know, because I know more about the disease, that what we were seeing was a fairly late part of the early stage of the disease. His wife had clearly been dealing with this for many years before that, but we were seeing odd memory loss and suddenly couldn’t read a menu at a restaurant, small things like that. There was a Christmas where we noticed for the first time ever he lost a game of chess to my brother and not only did he lose, but he also started moving the pieces in ways that the pieces don’t move, and this was a man who…

RP: You saw this.

DHP: Yeah.

RP: And what was your thought?

DHP: Nothin’ – odd, old, forgetful, yeah. And as it developed, he also started to wander, which is common, and my grandmother would have to call the emergency squad to try to find him, and she was no longer able to restrain him to keep him from going and that led to him being put in a nursing home. The last time I saw him he was in a nursing home in New York State. He was in a wheelchair with his arms tied with straps to the arms of the wheelchair looking at cutout pictures in a construction paper book that some helpful volunteer had put together of flowers. Just sort of happily staring kind of blankly at this thing. So that was my…

RP: And how old was he when he died?

DHP: He died, I believe he was 91.

RP: Meanwhile, what was the impact on his wife who I guess was caring for him?

DHP: It killed her. I don’t think it’s too much to say. She took care of him. He went in the nursing home, she collapsed from a stroke and of course, she was not a young woman either, but the statistics are pretty significant about the physical as well as the emotional and financial effects on caregivers.

RP: Unfortunately, this is not an uncommon story.  No, it’s not. Now, was your father his son?

DHP: No, my dad, that was my mom’s dad that had that. My dad had a slightly different progression of the disease. His first memories or dementia problems happened because he had had heart surgery. He had quintuple bypass surgery and had a stroke in recovery. And then something else seemed to happen. When dementia is caused by a loss of blood to the brain cells it’s called vascular dementia, which can be caused by a stroke, it can be caused by blood clots, whatever. Frequently, especially at that age, a person in his 80′s, vascular dementia can go hand-in-hand with Alzheimer’s. And ultimately, we moved him to my brother’s house. He lived with my brother for a while, but his abilities continued to decline and my brother and his wife and their kids would start to miss work or miss school because Dad couldn’t be left alone. And you’d leave a note saying, “Gone to the store, back in five minutes.” He would forget the note; he’d panic. So they found a great assisted living place seven miles from their house, moved him there. It turned out to be the best thing in the world. We usually think of that as a bad second choice. In this case, it was a wonderful choice because instead of being in a house where there were very few people around, ’cause people had to work or be in school, he was constantly surrounded by people. He flourished in a social environment. He was always a very social person. Because of the demographics, he was one of the few men among many women, so that was lovely. And he continued to decline. He never went as far as my grandfather did. My grandfather went the whole route of the disease. My dad was, as we think, mercifully, stricken with the flu and got very sick, and my brother called us all. We were all able to come up there and we were all with him and he still knew us when he passed away.

RP: These are two different faces of the disease, in a sense. Other than tons of money, which I don’t have the authority to give to you at this moment, what do we need to do?

DHP: We need tons of money because the ultimate answer to this is research, as with every one of these major diseases. What we need to do, I think, mainly is recognize how much we need the money. We will recognize this; we’re going to recognize this in a very few years because so many people are going to have the disease. Just purely based on how many of the Baby Boomers will get into that statistically significant age where people get it. That ah, nobody will have to go to Congress to testify, and nobody will have to explain the loss to business or the destruction of Medicare or the destruction of the healthcare system, it will be happening. We won’t be able to do anything about it. We’ll be able to look back and say, “Gee, we knew it was coming, and we didn’t do enough to stop it.” Aside from how stupid that would be, it will also mean the loss of millions and millions of lives we didn’t need to lose.

RP: Had your grandfather or your father gone through what they went through 20 years later, would something different have been accomplished? The family would have been more alert, the doctors would have been, what would have happened?

DHP: So many things would have happened. For one, there are more treatments available. But your first point, that we would have known, although there are still places in this country where people aren’t as educated as they should be, including physicians, as educated as they should be, on what Alzheimer’s is and what the signs are and what the tests are. But there’s a much better chance that as a family, we would have known, we would have been able to contact the Alzheimer’s Association because we would have had some sense of what it was, and that the treatments that are available now, to slow down the progression, the drug treatments, and also the difference in attitude that’s come over these 20 years. I think that in the early years, we didn’t know what this was, families were struggling with this on their own, they were just overwhelmed by this tragedy. Now, it’s still something we don’t ever want to happen to us, but it’s part of our understanding of what happens to people in the world, and I think that gives you more strength and perspective to fight it.

RP: Twenty years later, would your grandfather and/or your father had a better quality of life, lived longer?

DHP: Hmm. They would have had better quality of life. Would they have lived longer? That I’m not sure. Would my grandmother and my mom lived longer?  Quite possibly.

RP: They wouldn’t have been hiding it from the world.

DHP: That’s right, that’s right.

RP: The shame, to a great extent is gone?

DHP: Oh yeah, I think it’s something, you see it reflected in the mass media, when you see television shows, The Sopranos or Boston Legal, or whatever, which are not even about Alzheimer’s but they have characters who have this disease. There’s a reason for that, and it’s a reflection, a) of how much it has spread, that it’s actually become something that people feel a need to respond to commercially in television, but also that it’s not such a stigma, that it’s a thing, it is a part of our life that we have to acknowledge and accept and then find a way to fight.

RP: David Hyde Pierce, thank you so very much for joining us on Life (Part 2).

DHP: My pleasure, thanks for talking to me.