Alzheimer's books, alzheimers, alzheimers awareness, dementia, still alice, younger onset alzheimers
_____ CONTEST CLOSED _____
“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.
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.
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!
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!
I would love to read Still Alice. My mother had early onset Alzheimer’s about 20 years ago and she died after suffering for about 10 years. Back then, they didn’t know much about Alzheimer’s or how to help my Mom. She was the best and I still miss her.
Adrienne Powell said:
Already order my copy. Would be honored to win a copy and donate to the Alzheimer assoc!
Reblogged this on Lynda Converse and commented:
This is so important. We must do all we can to inform and educate everyone about this devastating disease. Although fiction, “Still Alice” is an excellent tool to help inform those few, who as of yet, are untouched by Alzheimer’s disease. I pray you are never touched but we are all affected and must work too hep and inform each other.
Book didn’t just hit close to home..It hit home. Don’t know if I will have the courage to watch the movie. The book traumatized me and I am afraid for my own future based on how I am living through this watching my mother wither away. A regal, elegant woman who not can’t contol her bladder nor does she live by the Emily Post rules I was raised on. So glad Still Alice was written, more glad I read it and will be even happier if the world reads it.
Thank you for what you’re doing. I’m doing all the research I can so that I can help my Mom.
Ann Napoletan said:
You are the WINNER!!! Please email me at email@example.com with your name and address. Congratulations!
Hope it helps you in your journey with your mom!
Thank you so much. I look forward to reading it.
Linda Buytendorp said:
As a caregiver to my husband with Alzheimers I put off reading this book because I was fearful that it would just be a lot of conjecture with lots of make believe. I can’t even begin to tell you how wrong I was. This book explained so well what my husband must be going through. The situations are real things which happen to dementia patients every day. If you want an excellent story and a little education on the subject of dementia this is the perfect book.
Thank you for this. I first became aware of the book through the movie being made with 2 of my favorite actresses – Julianne and Kristen. As a young person, it has really opened my eyes to this disease. It is scary and horrible and almost too much to bear, yet we have to. The book and the movie can only do good things, and Julianne winning that oscar (she will, i can feel it in my bones!) will raise awareness even more. Kristen Stewart’s fans raised over 24k for alzheimers research within a few weeks. Let us continue to spread the word.
Here is the link to the charity fundraiser Kristen’s fans held http://curealz.org/heroes/fans-kristen-stewart I’m so glad that a young and very famous actress chooses movies that can educate her young fans about issues such as this. It might change the set opinion that it is just an old person’s disease that they don’t have to worry about.
Lisabeth Stelz Riach said:
Would be honored to receive a signed copy of this book. In turn, I would forward it on to the wife of my dear cousin who is suffering with ALZ. They have always been a big part of my life. I am heartbroken — yet again — to see this horrendous disease take one more from my family. Thanks Ann for all that you do and for just being you!
Kelle Kramer said:
I took care of my mother for almost 4 years before she passed from Alzheimer’s. I clearly remember one night tucking her into bed; I kept a picture of her mom on the nightstand, my mom asked me who the woman was and I told her it was her mother. She then looked at me and asked me who my mother was. I felt like the wind was knocked out of me, I told her she was my mother and kissed her cheek. I left her room and just started crying. I knew then that I had lost the mother I grew up with and my heart was broken. In May of 2012 I just felt I could no longer care for her, it was becoming more difficult to look after her. I had picked out a care center and made plans to take her. Then something told me she wasn’t going to be around very much longer and the thought of her not being with loved ones when she passed made me sad. I chose to care for my mother, my husband and children were very supportive of that decision. 6 months later on November 21, 2012 my beautiful mother passed away. The last 3 weeks of her life was so special and touching that I will always be thankful that I cared for her until the end.
Until my husband was diagnosed…I didn’t realize how many kinds of dementia existed. We need to keep educating ourselves and others!
Bonnie Hopkins said:
I love the book already! “Still Alice!” I could substitute that with “Still Elsie” or even better, “Still My Mom”!
I have read this book, my mother borrowed it to me. I would love to have a copy! This taught me so much about what my grandmother had to go through.It was my grandmother (my mother’s mom) who passed away from Alzheimer’s.
I imagined myself as Alice. I imagined myself watching my world fall apart, forgetting….this book had me in tears. I would so honored to have a igned copy.
Annette Kitterman said:
I would love to receive a copy of this book. I am a caregiver of many who have suffered over the years. The world as a whole needs all the education it can get. I realize it is Fiction but from the comments above you have written quite a few facts. I wish you the very best!
Jamie Pope said:
I hadn’t heard of this book until now. It’s just been added to my Must Read list. I am a hospice social worker and dementia educator. I was also a caregiver for my grandfather, who died with Alzheimer’s disease. For these two reasons, I’m an Alzheimer’s advocate. But I admit, I don’t know as much about early onset Alzheimer’s, because I’ve never come across a case of it. I need to change that, because due to some disconcerting cognitive changes, I’m concerned about my own risk. Again, I haven’t read this book (yet), but thank you for writing it. I’m looking forward to it, and to the movie.
Pamela Joslin, RN. BSN said:
Definitely on my “must read” list. My husband & I just experienced a short but winding journey with EOAD in July, when his mother passed away. She was angry, frightened, resentful & combative through it all. My heart goes out to everyone touched by this horrible disease!
Jan Larsen-Fendt said:
Hello. I have yet to read this book, but I have heard absolutely wonderful things about it. I am a nurse, with over 22 years experience. I was honored to have worked with the elderly and more recently as a hospice nurse who traveled to nursing homes to care for patients on hospice. I also was a co-caregiver for my mother, who had Alzheimer’s, and just passed away in April. My father cared for her in their home.
I am also a fibromyalgia sufferer. As such, I take multiple medications, some of which affect my memory. I also have what is referred to as “Fibro Fog.” I worry often about Early Onset Alzheimer’s due to my frequent inability to “word find,” the inability to remember some things from day to day, etc.
As Ann mentioned in her article, she initially put off reading “Still Alice” because she didn’t want to know what it was like in the “early years.” I must say, I can relate to that feeling as well.