"Still Alice" novelist shines spotlight on early onset Alzheimer's

"I can see the words hanging in front of me and I can't reach them, and I don't know who I am, and I don't know what I'm going to lose next," says Alice Howland, the main character in the new film "Still Alice," which opens today nationwide. The film tells the story of a 50-year-old Harvard linguistics professor who is diagnosed with early onset Alzheimer's disease. Alice is played by actress Julianne Moore, who won the Academy Award for Best Actress for her role.

The movie is based on the 2007 novel of the same name by Lisa Genova, who it turns out isn't just a novelist. Before turning to writing fiction, Genova earned a PhD in neuroscience at Harvard University, and has since become an activist seeking to raise awareness about Alzheimer's disease and other neurological conditions that are too often misunderstood.

In the U.S., an estimated 200,000 people have early onset Alzheimer's disease, meaning they developed it before the age of 65. Some are diagnosed in their 40s or 50s with this devastating neurodegenerative disease that destroys a person's intellectual and cognitive abilities and robs them of their memories.

CBS News talked with Genova about what compelled her to write "Still Alice" and how Alzheimer's disease is still misunderstood. This interview has been condensed and edited.

Your main character is a depiction of what it's like to have early onset Alzheimer's disease. Tell us a little about Alice.

She has moments of memory loss and confusion, and attributes it, at first, probably to stress or not getting enough sleep or maybe menopause. But eventually things sort of worsen, as they do with this disease, and she's diagnosed with early onset Alzheimer's. The book then becomes a journey into trying to hold on to yourself and understanding who you are. For Alice that's very intellectual, she can't be that anymore because of this disease. Then her life becomes a question of 'who am I and how do I matter, and am I more than what I can remember? How do I stay connected to myself and the people I love while I'm losing pieces that I had always thought of as who I am?'

What inspired you to write this novel?

My grandmother had Alzheimer's in her 80s, and this experience was the inspiration for the book. My background is not as a novelist. I have a PhD in neuroscience from Harvard. I used to do brain research. I read everything I could about Alzheimer's to try and understand my grandmother's Alzheimer's. I found what was lacking is an understanding of what it feels like to have it. Because we as a family assumed that forgetting was a normal part of aging, we missed the beginning of my grandmother's Alzheimer's altogether. Whether it was denial or she was very good at hiding it, I think for someone her age we don't really see the beginnings of this disease in a very alarming kind of way.

Why did you make the decision to have your protagonist be someone who gets this disease so young?

Ten percent of people who are diagnosed with Alzheimer's are diagnosed under the age of 65 -- that's considered young onset -- and 90 percent are over the age of 65. Generally, this has always been considered the disease of the elderly, and stereotypically thought of as the disease of the dying elderly. But there are so many people living with Alzheimer's and they're not typically given a face or a voice.

I knew I wanted to write about Alzheimer's, but I didn't yet know who my protagonist was. I wanted to understand the beginnings of this disease, and so I knew the best way to learn was to talk to younger people who had it. Because if you're in your 50s, 60s or even 40s and you get Alzheimer's, you are going to notice the very first symptoms that aren't in the norm because you're in the middle of working and taking care of kids, you're in the prime of life.

I think I was also guilty of that misconception that Alzheimer's is this cliff you fall off of, you're diagnosed, then you're suddenly mentally incompetent. I think the tenacity with which people with Alzheimer's fight to be present and to live life with all that they can while they can -- I learned so much about how to live from people who have Alzheimer's.

How did you research your book?

I contacted 27 people who have young onset or are in the early stages of Alzheimer's, and as I talked to them -- I was in communication with them every day for a year and a half as I was writing this story. I felt an overwhelming responsibility to give a face and a voice to this younger crowd.

I stayed in touch with the 27 people, and I'm still in touch with many of them today. Some have died, some are no longer able to be on the computer and some are and do remarkably well. So the people who do well, they're advocating for support and resources for people living with Alzheimer's.

Fortunately, I sort of had this magic all-access pass because I had this PhD in neuroscience from Harvard, I could access anyone. I called the chief of neurology at Brigham and Women's Hospital in Boston and said I was interested in understanding how a 50-year-old woman might come to be diagnosed with Alzheimer's. What does that conversation sound like, what sort of tests is she put through, what happens?

He said, sure, come on in, and suggested I pretend to be [Alice]. He told me, tell him the symptoms I was presenting with and I went through the assessment. I sat with him for two hours. I shadowed neurologists at Mass General Hospital in Boston. I interviewed genetic counselors and general practice physicians. I sat in on neuropsych testing with actual patients. I went to care group support meetings, and I came to know people who have it.

You have all of these credentials. So how did you end up turning to fiction -- and why?

I read all the nonfiction books about Alzheimer's and they were intellectual and they helped me understand how to be a better caregiver. They helped me understand the biology of the disease, but it was information that was very intellectual. The intuitive leap for me was that fiction is a place where we can explore empathy and it offers the chance to walk in someone else's shoes. I think that reading a nonfiction book about Alzheimer's takes a certain interest and a certain commitment by someone and that audience is smaller. But if I write a novel about a woman living with Alzheimer's, anyone might pick that up and it then becomes a way to educate the general public, though they don't know they're getting educated.

How much time did you spend researching your novel?

It's so funny, Julianne Moore did four months of research before going to set and I did the same -- exactly four months of research before I put pen to paper. Then I continued the conversation with people with Alzheimer's every day while I was writing the book.

Do you know how Moore prepared for her role?

She did the homework. She didn't say I'm going to imagine what it feels like to have Alzheimer's. She really educated herself and spent the time, and went to the neuropsych testing and met people who have it. She was very specific in what she did so all of that information formed the choices she made and it paid off brilliantly. It was so nuanced and authentic.

Some newer research indicates that we'll begin to see more people diagnosed with the disease at a younger age. Do you think this is true, and why?

It's hard to know why we're going to see more of that. The average life expectancy in 1900 was 45 years old, so we weren't seeing a lot of Alzheimer's back then because the number one risk factor for Alzheimer's is age. For younger people getting diagnosed, I think it has more to do with education.

Twenty-five years ago, we didn't have statins for high cholesterol and people were terrified of heart attacks and heart disease. The idea of dying of a heart attack was a very scary thing and a very real thing. When I was growing up that was what would kill your grandparents or parents. There's not as much fear around heart attacks today. People go to the doctor now to go get their blood pressure taken and their blood checked for cholesterol levels, and people don't flinch about doing this. They go and do this because they can do something about that. They can exercise and modify their diet and they can go on statins.

Quite frankly, what's good for your heart is also good for your brain. The risk factors for Alzheimer's are very similar. High cholesterol drives the production of amyloid beta. The overproduction or accumulation of amyloid beta plaque is what leads to all of the problems that cause Alzheimer's. So a Mediterranean diet can help. Exercise in animal models has been shown to clear amyloid beta better than any pharmaceutical we have so far.

But with Alzheimer's we're not there yet -- this idea of going to the doctor to talk about cognition. This education is starting to sneak its way into the consciousness of the public, and so I think we're going to see more cases of diagnosis in the younger crowd because people are more willing to have that conversation with their physician.