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“Interesting subject, seems it’s becoming very topical.”

Last week, I attended a wonderful fundraiser featuring Dr. Lisa Genova, author of the New York Times best selling novel, Still Alice.

I overheard the aforementioned statement at the reception prior to the main event. Becoming very topical??? Excuse me if I’m a bit passionate, but this illustrates the fact that we have much more work to do. While awareness has increased significantly over  the past 10 years, the mainstream population still doesn’t grasp the gravity of the epidemic we’re facing.

Those of us personally affected understand the urgency surrounding Alzheimer’s. We are terrified that we might be next. This disease has changed our perspective in countless ways, but there are too many people who are still in the dark. It’s often said there are two kinds of people; those who have been personally touched by Alzheimer’s and those who will be.

Educating the Masses

Moments after hearing the rather lackadaisical remark, I had the opportunity to meet Dr. Genova, herself a neuroscientist by education. I thanked her for all she’s doing to raise awareness among the masses because she is reaching people who wouldn’t typically seek out a book about a woman with Alzheimer’s. Book clubs across America are reading Still Alice; people are being touched deeply and inspired to get involved. Readers are beginning to understand the disease and talk about it. With that we’ll begin chip away at the stigma and shame associated with dementia.

Remember when no one wanted to utter the word “cancer” or discuss HIV? It wasn’t until movements were created around these killer diseases that things began to change. My sincere hope is that the press Still Alice is receiving will stir the masses. The reality is, people need to get good and pissed off. Every son, daughter, husband, wife, partner, brother, sister, friend, neighbor, co-worker must understand that sooner or later they too will experience the wrath of Alzheimer’s firsthand unless we take action in a major way.

Graphic: USAgainstAlzheimer’s

We must let our government know it’s absurd to think that Alzheimer’s disease is the only leading cause of death without a means to cure, prevent, or even slow its progress. It’s utterly  incomprehensible that we’re spending $215 billion annually on Alzheimer’s care in the United States and a mere $500 million on research. And people need to know that this is not just a disease of the elderly.

Understanding Younger Onset

In Still Alice, Alice Howland is a brilliant cognitive psychology professor and world-renowned linguistics expert, who at age 50 begins to have trouble finding words. She’s becoming increasingly confused, disoriented, and forgetful. This highly accomplished, well educated, far from elderly, woman has younger onset Alzheimer’s. The disease takes hold and doesn’t let go.

I must be honest. I’ve had this book on my Kindle for several years, and I haven’t worked up the courage to read it. There’s something about the idea of knowing what it feels like in those early years. Fear, denial, a desperate desire to keep the secret and hide the fact that something is terribly wrong. These are all things my mom must have experienced, and the thought of that breaks my heart. She must have felt so alone in those early years, quite possibly even before she retired at age 61, as she started to realize the brain she had always taken for granted was now failing her.

You are so much more than what you remember.

Dr. Genova’s exhaustive research included speaking with many individuals living with younger onset Alzheimer’s. While the book is a work of fiction, it’s very much based in the reality of living with this disease. People in their 40s, 50s, and 60s are living Alice’s story every single day. As my 50th birthday looms around the corner, that hits a little too close to home.

Still Alice, the movie, will be released widely in January, and there is already talk of multiple Oscar nominations. As someone whose life was changed forever by this horrific disease I am so thankful to Dr. Genova, executive producer Maria Shriver, and everyone involved in the making of this film. Together, they are making a difference, changing the way America views Alzheimer’s, and helping to bring it out of the shadows.

Raise Your Voice

Last month at the WomenAgainstAlzheimer’s Summit in Washington, we heard from leading researchers Dr. Reisa Sperling (Brigham and Women’s) and  Dr. Kate Zhong (Cleveland Clinic) among others. Their talks were filled with hope. Great work being done in research centers across the country, and each day we’re getting closer. The day will come when we have a cure or at least a viable way to slow the disease’s progression, but we have to keep fighting.

Graphic: USAgainstAlzheimer’s

In a few weeks, we’ll be heading to the polls. There’s no time like the present to call or write your senators and representatives! Let them know how important this issue is. Remind them that every 67 seconds, someone is diagnosed with Alzheimer’s and that if we remain on the current trajectory, the cost of care in the U.S. alone will exceed $1.2 trillion by the year 2050. Tell them your personal story. Let your voice be heard!

Postscript

After writing this piece, I gathered my courage, sat down, and read Still Alice cover to cover. While the book is fiction, I believe the author’s careful research resulted in a very realistic depiction of younger onset Alzheimer’s. Alice’s story is tender, frightening, and certainly thought-provoking, but mostly, it’s a wonderful reminder that our loved ones living with dementia are very much alive and present.

Those living with this disease are capable of experiencing love and joy, just as they are able to feel sorrow and loss. We must remember they still have so much to contribute to our world and they deserve every opportunity to do so. As critical as research is, we must also focus on those living with Alzheimer’s today and do everything possible to support their needs and the needs of their families and caregivers. 

One lucky reader (continental U.S only, please) will receive a copy of Still Alice, signed by the author. To enter, simply leave a comment on this post. A random winner will be drawn on November 1st to mark the beginning of Alzheimer’s Awareness Month. Best of luck!