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Lou-Ellen Barkan interviews
David Hyde Pierce


Lou-ellen Barkan (LEB): So much has changed for us since we talked six years ago. Is that true for you?

David Hyde Pierce (DHP):
In the fifteen years Iíve been involved, things have changed dramatically, but not in a straight trajectory. In the early years, we focused on public awareness and federal funding. Every year we raised our goal and the government responded. Maureen Reagan, who was a real powerhouse gets the credit. Growing up in the White House, she understood how power worked in Washington. She was unstoppable and we made huge progress.

When Maureen died and we went to war, the focus on Alzheimerís disappeared. But in the last eighteen months, the pace of breakthroughs is picking up along with media interest. I wish we could take credit, because so many dedicated people have been working on the issue. I think thatís part of whatís going on, but sadly, itís really the demographic trend as baby boomers start hitting 65 and the prevalence of the disease increases. Thatís what is putting pressure on government, raising peopleís awareness and growing the momentum.

LEB:
One change is the increase in media coverage. Almost every day, thereís an Alzheimerís related story in the press. But, unfortunately, media attention doesnít off set the demographic trend. No matter how much coverage we get, we canít make up for the number of New Yorkers who are getting older.

DHP:
Youíre right to be concerned because whatís at stake will affect millions of lives. Because thereís lag time between the initial research on therapies and a drug that is available commercially, we are sealing the fate of the five plus million people already ill and those to come.

I see a strong parallel between Alzheimerís and the early days of the AIDS crisis. The play ďThe Normal HeartĒ is a reminder of how nothing was done for a long time. I think itís because the people who were affected just didnít seem that important. They seemed to be on the periphery, on the fringe ó and thatís how we think about older Americans. Eventually, everyone fi nds out the hard way that there is no divide between older Americans and the rest of us.

LEB:
Our social workers say we are hurt by ageism, a bias against worrying about things happening to older people, or at least treating these issues very diff erently than we do when we worry about children or younger adults.

I have to admit that in my first few weeks in this job, I expected to be greeted by a group of clients in their 80s and 90s. I was shocked to see the office full of clients from seventeen to fifty, frantic with worry about their jobs, their parents, and their financial security. And given the diffi culties in my own family, Iím not sure why I didnít realize right away that the disease aff ects everyone.

The good news is that as AD has affected more of us, we are less afraid to talk about it. But I wonder when weíll become angry enough, because thatís what happened with AIDS and breast cancer. I donít think we have enough rage.


DHP:
In the early years with the Association, I was very angry. What fueled me was what the disease did to my family. When it first happens, when you first lose someone, itís unthinkable that you can live without them. And then, even worse, you find that you can and you have to. I havenít lost my hatred of the disease but, over time, the pain becomes manageable.

The great thing about the Alzheimerís Association is that it keeps being restocked by passionate people, especially young people. The NYC Chapterís Junior Committee is such an inspiration. Theyíre young, theyíre passionate and their dedication, drive and work ethic gets my fires burning again.

LEB:
When I arrived in 2004, I found a group of young professionals with real commitment, and all they needed was a little attention and focus to turn them into the powerhouse they are today. We gave them the right to allocate the funds they raise and made it exciting and personal for them. In the last few years, theyíve raised and allocated close to $1,000,000!

The program also meets one of our goals to train responsible philanthropists, who are thoughtful about the way they allocate money, passionate about raising it and willing to stick with it. Weíre so proud of NYCís Junior Committee, but the truth is if you want to keep young people engaged, you need to invest them in the outcome, because theyíre the ones that are going to pay the bills if they fail.


DHP:
Thatís the same model we use for the Associationís Zenith Society. Donors get presentations on research projects that have been vetted and they vote on what they want to support. Thereís something about realizing your voice matters, that these are decisions that directly affect you that makes the process more meaningful. I think if government gave us a true picture of a future with a full-blown Alzheimerís epidemic, Americans might make different choices.

I look at people and I think ďYes, save as much money as you want for your retirement and Iíll tell you what youíre going to be spending that money on. Youíre going to be spending it on your own or some elseís care for Alzheimerís disease, unless we find a way to change the course of the disease.Ē

LEB:
Our National Public Policy office did a great job getting that message out to Congress, who heard us and passed NAPA. During that same period, we grew the number of our local advocates over 300% in less than four months. Once advocates understood they had a real task to push NAPA through, they got invested and involved.

DHP:
When people complain that our government doesnít work, I say it works exactly the way itís supposed to, our elected officials do what we ask them to do. And if youíre not happy with them, you vote them out.

LEB:
So how can we make sure that the candidates understand and support our position?

DHP:
Iím stunned how often Alzheimerís disease is not mentioned in national debates. They talk about Social Security reform and Medicare and Medicaid, but Alzheimerís is the greatest threat to the health care system and for a long time, it was left out of the conversation. Thatís why Iím excited about NAPA, which will provide a way to keep Alzheimerís at the table.

LEB:
I attended a presentation at Rockefeller University in which I learned that, even with all the focus on cancer and the National Cancer Institute, thereís been very little progress in curing some very common cancers. Apparently, while there has been great improvement in treating breast cancer, thereís been no improvement in curing melanoma. NAPA is exciting because it gives us a place to go with our concerns, but itís still up to us to make NAPA a meaningful resource.

DHP:
NAPA is an idea that costs government nothing. We canít underestimate the fact that every member of both houses of Congress voted for NAPA. We have to be actively engaged in making sure this becomes a real agency Ė and a burr in the side of the administration.

LEB:
I think that if the Presidentís mother-in-law, with whom he has a reflfl ections 8 volume 35 fall 2011 very warm and loving relationship, became ill with Alzheimerís this issue would get more attention. Nothing brings the message home like a personal experience.

DHP:
Weíve seen the spikes in public interest when a public figure discloses a connection to Alzheimerís or dies. Thatís what happened with President Reagan. But eventually, the publicís interest wanes and since

Alzheimerís is such a gradual killer, people forget the number of lives at stake and it falls out of the public eye. Alzheimers is a stealth disease, like a Trojan horse, that quietly works its way through society. If we wait for the public to catch up, it may be too late, so those of us who understand the threat must do our job.

LEB:
I remember the outcry when Betty Ford announced she had breast cancer. She was the first public figure to openly disclose that she was ill. And suddenly, mothers and daughters and fathers and sons got concerned and angry. They sustained that anger until funding was approved and increased. Their rage took us to a new place.

DHP:
The thing thatís diff erent is that with cancer, thereís more hope. Our community has made progress in diagnostics, helping caregivers and reducing the stigma, but the bottom line is that therapies have not advanced and there are no survivors of Alzheimerís disease ó yet.

LEB:
So whatís the next step?

DHP:
No one who has been touched by Alzheimerís needs to be told to advocate. Now others see the threat and realize this is something they canít ignore. There are breakthroughs as scientists share knowledge and we see elected officials with different political views coming together. The truth is the Association canít do this on our own and neither can government, private industry or the scientific community. Itís such a complicated fierce disease. It is these partnerships and collaborations that will defeat Alzheimerís.

LEB:
We agree and are actively looking for ways to expand our audiences. Our ďConnect to CultureĒ program has affi liated us with museums, dance and music programs. Have you heard about any other new programs?

DHP:
Depending on the stage of the disease, the arts are fertile ground for reaching people with Alzheimerís, whether its museum experiences, painting or journal writing ó all new ways of expression.

LEB:
And every time, we engage with an institution, we have the opportunity to tell our story and bring on new supporters. And thatís what you have done for us throughout the fifteen years youíve been working on our behalf. I know there is much more on the horizon and on behalf of the NYC Chapter, I can tell you that we are looking forward to sharing every moment with you.



David Hyde Pierceís longest-running role to date has been as an advocate for Alzheimerís disease awareness and research. Best known as Niles Crane, the character he played for 11 years on NBCís hit sitcom Frasier (as well as his 2008 Tony for the Broadway musical Curtains), Pierce originally got involved with the Alzheimerís cause for very personal reasons, losing his father and grandfather to the disease. A long-time supporter of the New York City Chapter, we thank David for his continued support.



Alzheimer's Association

Our vision is a world without Alzheimer's
Formed in 1980, the Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research.