as told to jill sieracki | October 1, 2013 | People
David Hyde Pierce speaks at a 20th anniversary Alzheimer’s Association event in LA.
Hyde Pierce with fellow actor Victor Garber at an Alzheimer’s benefit.
Nicole Sexton, Princess Yasmin Aga Khan, and G. Marlyne Sexton attend the 2011 Alzheimer’s Association Rita Hayworth Gala Kickoff in NYC.
Nicole Sexton, Robin and Martin Meltzer, and Sharon Bush support the cause at last year’s Rita Hayworth Gala.
The Waldorf-Astoria, where the 2013 gala will be held.
The last time I saw my grandfather he was in a nursing home in upstate New York. He was in a wheelchair, and his arms were strapped to the side of the chair for his safety. He didn’t know my grandmother, he didn’t know me, and he was looking blankly at a booklet of pictures pasted onto construction paper. My grandfather—my father’s father—was a very smart, witty, self-educated man. He was a chess player and very good with his hands; he would build full-size ships as well as elaborate model wooden boats. He was very important in my life—I think I got my sense of humor from him. Seeing him marooned in a wheelchair in that nursing home... that’s a memory that lives with me.
My grandfather died from Alzheimer’s disease, although it wasn’t until he passed away that they diagnosed him. I had heard about the Alzheimer’s Association, so when I had the chance to go on Celebrity Jeopardy in November 1994, it became the charity for which I played. Ultimately, the folks from the LA chapter started involving me in the association, by appearing at fundraisers and signing autographs to help bring people to the cause.
As the years went by, they enlisted me to be more of a spokesperson; then later, I joined the national board. I started going before Congress to testify about my family’s experience with Alzheimer’s and the need for greater attention to the disease. As my involvement with the organization deepened, the biggest shock was learning just how many people suffer from Alzheimer’s. It’s a disease with a lot of stigma attached to it. People sometimes feel like there’s nothing we can do, so they just ignore it and hope it doesn’t get them. They were afraid to talk about the disease, because there was—and there still is—no cure.
Today, I’m also on the advisory council for the National Alzheimer’s Project Act, which Congress unanimously passed and the president signed just a few years ago. It’s the first national plan to fight Alzheimer’s. This war is being fought on so many fronts, and education is just one of them. We are also so far behind in terms of funding. If you look at the great crises of our time—cancer, HIV/AIDS, heart disease—all of them show a declining death rate in this country while Alzheimer’s continues to skyrocket.
We want to end the disease as soon as possible, but research takes time, and there are going to be a lot of families who are going to live through this disease and people who are going to die with it before we ever find a cure. In the interim, there are equally important things to focus on—such as creating well-trained and well-paid home-care workers, which is a relatively new idea. Home care is a much less expensive way to deal with people with dementia than hospitalization or nursing homes.
In government, everyone is talking about cutting back, but what it will cost us to let this disease run rampant is so much more than what we have to spend to stop it. We have very accurate statistics on the percentage of people who get Alzheimer’s as they reach age 65 and how the percentage grows. We know how many people there are in this country and the rate at which they’re aging. If it weren’t so sad, it would make me laugh when I hear the debates about healthcare. Because, Obamacare or not, if we don’t tackle Alzheimer’s, the costs will be far beyond anything we can afford. Our goal is to get people to understand that before it’s too late.
The only thing we don’t really have is time. Clinical trials take such a long time, and if you can only afford to do one after another, then millions of people will be lost to the disease before we make any progress. The National Alzheimer’s Plan has said we’re not going to wait. We’re not going to lose researchers because we cannot afford to pay them; we’re not going to lose opportunities to discover treatments and a cure.
One important change I’ve seen over my years working with the association is hope. Because we’re able to talk about the disease more openly, families are able to find ways to interact positively with family members who have Alzheimer’s and find support. I was just at the New York City chapter of the Alzheimer’s Association and saw they recently opened a new floor for support groups and telephone banks. The feeling of compassion, hope, and respect that you get just walking into that space is such a huge change from the way Alzheimer’s used to be [managed]. That gives me hope.
I am not a leader in this movement; I am an ardent follower, and what keeps me going is the people in the Alzheimer’s Association. My memories of my family’s experience were tough—my grandmother died before my grandfather in no small part from having to care for him and having no place to turn. But time has passed and those wounds are not as raw as they were when my grandfather first died. Every time I’m in contact with people in the Alzheimer’s Association or families who are being helped by the association, my energy and my commitment is revived, and I get inspired.
If anyone reading this has been touched by Alzheimer’s, then he or she knows how great the need is. If you’ve seen this disease once, you don’t ever want to see it again. And if anyone reading this is lucky enough not to have experienced Alzheimer’s, the gala is a great place to go to get a taste for the loss, the conviction, and the hope that is bound up in the fight against the disease. It is in all of our futures—we will either be living with it, taking care of someone with it, or paying for the cost of it. We realize that none of us can conquer the disease alone; we have to do it together.
photography by jason merritt/getty images (pierce); julie skarratt/courtesy of alz (garber); clint spaulding/patrickmcmullan.com (Gala); owen hoffmann/patrickmcmullan.com (gala); ben hider/getty images (waldorf astoria)