When neuroscientist Lisa Genova first pitched ‘Still Alice’ to literary agents, she was rejected by all of them. “People are so afraid of Alzheimer’s…. everyone who was even marginally interested in [the book] thought, ‘I just don’t think the general public is going to want to read about this,'” she said. After self-publishing her book and asking readers to write reviews on Amazon, a literary agent finally agreed to represent the book. Eventually, ‘Still Alice’ became an Oscar-nominated film. Genova said she used the power of storytelling to encourage people to speak about Alzheimer’s and connect with those who are living with the disease.
- Genova wrote the book to humanize a disease that is sometimes viewed as too depressing or scary to talk about
- She spent hours connecting with those who are living with Alzheimer’s to better understand how to portray Alice and tell her story
Being Patient spoke to Genova about what drove her to write ‘Still Alice,’ how the book became a major motion picture and the latest brain health research.
Developing Empathy for Alzheimer’s
Being Patient: You’re a neuroscientist, but you’re also a storyteller. In ‘Still Alice,’ you beautifully captured the emotional side of what it’s like to live with Alzheimer’s. Why do you think that is so important?
Lisa Genova: As human beings, I think we’re designed to understand through story. In my most recent book about ALS, I discuss the ice bucket challenge. Millions of us dumped buckets of ice water over our heads. We’re familiar with the letters ALS and maybe we know a little bit about Stephen Hawking or have some vague familiarity with the disease, but when doing the ice bucket challenge, did you feel anything about ALS? Probably not. You may have done the ice bucket challenge, posted it on Facebook, checked your likes, maybe you donated some money, which is wonderful, but you probably didn’t feel anything. It doesn’t cause you to have any empathy. I could have sympathy for those with ALS and could think ‘Oh, poor them, that’s awful,’ but they stay “otherized,” or different from me, and I stay safely different than them, so our worlds don’t overlap. They are excluded from my community.
But through story, we really can move from sympathy to empathy. Empathy is feeling with someone. That’s the imaginative leap I make when I imagine and feel what it’s like to be you. In doing that, it makes a world of difference.
People are so afraid of Alzheimer’s. I couldn’t even get ‘Still Alice’ published at first because people who were even marginally interested thought that the general public would not want to read about Alzheimer’s because it’s too depressing or scary. They said, ‘You’re a neuroscientist. Write a nonfiction book about Alzheimer’s.’ A nonfiction book is going to stay very intellectual. Very few people would read that. However, if I can write a story about Alzheimer’s that invites everyone in, then we can begin to humanize and become familiar with these diseases that scare us. Then, they’re not just diseases, they’re about the people living with diseases.
Being Patient: In ‘Still Alice,’ you show how Alzheimer’s does not destroy your emotional intelligence; you still have emotional sensitivities and are able to assess emotional circumstances. In the film, Alice’s daughter reads her a passage and she understands that the passage is about love. As a neuroscientist, what do researchers know about Alzheimer’s and how it’s unable to destroy emotion?
Lisa Genova: Even without Alzheimer’s, just think about this for a minute: Have you ever gotten into an argument with someone in the morning? You get into an argument with your spouse or child and you’re still mad by mid-afternoon, but you can’t remember what you fought about. Or, let’s say you had a beautiful exchange in the morning and you still feel great throughout the rest of the day. We often forget the language or what was said, but the emotional content lingers; the emotional memory outlasts what was said, even without Alzheimer’s.
With Alzheimer’s, it doesn’t just attack the whole brain uniformly and indiscriminately; it attacks specific parts, and so it goes after the hippocampus first. That’s a structure that’s essential for the formation of new memories. This is why people with Alzheimer’s first symptoms are forgetting what you just said, or repeating themselves. It attacks language centers. You have trouble finding the right words and you have difficulty speaking over time. It attacks the prefrontal cortex, and so you have problems with decision making, logical thinking and problem-solving. Alzheimer’s disrupts a lot of the brain, but it doesn’t disrupt your ability to feel emotion. You can still feel loved, lonely, sad or upset.
Alzheimer’s disrupts a lot of the brain, but it doesn’t disrupt your ability to feel emotion. You can still feel loved, lonely, sad or upset.
If you know anyone with Alzheimer’s, you know these things to be true. You know when your loved one feels at peace and loved. You know when they feel agitated and scared. You don’t need memory to have emotions. Think back to when you were raising your babies. Your five month-old baby doesn’t have memories beyond five months, and yet your baby can feel loved and scared.
Someone will say, ‘Well my dad’s in a nursing home and he’s got Alzheimer’s. I don’t visit him anymore and I really do feel awful about this.’ The justification that this person will give is, well he doesn’t know who I am anymore, and won’t even remember that I was there five minutes after I’ve gone, so what’s the point? The point is similar in that you’re right — he’s not going to remember what you said in that visit, but he will feel what you offer him. If you bring love into the room, he will feel loved, and that’s worth it. That feeling of being loved can outlast the memory of who was in a room and what happened.
Being Patient: As a neuroscientist, you must have done a lot of research on things they don’t teach you about when you are going through school. How has that helped you understand the emotion behind Alzheimer’s from a scientific perspective?
Lisa Genova: I was 28 when my grandmother was diagnosed with Alzheimer’s. I came at understanding her Alzheimer’s through the lens of neuroscience. I learned everything I could about the molecular neurobiology, the clinical presentation and the clinical management of the disease. I learned how to be a caregiver, and that was all helpful to a point, but it lacked empathy. I lacked empathy. I couldn’t understand what it felt like to be her, and so I didn’t know how to stay connected to my grandmother when she had Alzheimer’s.
The research that I do for all of my books goes beyond the textbooks, scientific literature and even the conversations with the physicians and scientists. I really dig in and get to know the people who are living with this. For ‘Still Alice,’ I came to know 27 people living with early-stage or young-onset Alzheimer’s who could still communicate what it feels like to have it. I was in touch with them every day for the year and a half that I was writing this book. We were in touch through email, a daily, one-hour live chat, online, by phone and in person when possible. That’s how I figure out what it feels like. It’s such a privilege for me because here are folks who really are in the most vulnerable place in their lives. We’re not making small talk; we’re really talking about stuff that matters. What are you going to do with the time you’ve got? How are you gonna matter? How will you still be seen and heard? What do you hope for? What are you afraid of? What’s your death going to look like? These are conversations that we have normally. Getting at what it feels like and the emotion of what it’s like to go through this to wake up in the morning and look next to you and not recognize the woman in your bed for 10 minutes, and then it clicks back in that that’s your wife of the past 35 years. What is it like to lose your job and your identity along with it, or to have people be afraid of you? We talk about all of that.
Being Patient: That’s captured well in ‘Still Alice’ when her daughter asks her what it feels like to have Alzheimer’s. What’s the best way to put yourself in the shoes of someone with Alzheimer’s, and how did you get into the headspace of someone dealing with a diagnosis?
Lisa Genova: I shadowed neurologists at Mass General Hospital in Boston and I sat in on neuropsychological testing. I was there in the room when folks were diagnosed and then continued to spend time with them again for about a year and a half. I think that for diseases and conditions like Alzheimer’s, ALS, Huntington’s, Autism, for a lot of us, they tend to intimidate us or scare us a little. We’re worried we may say the wrong thing. We would rather look the other way and not deal with what you’ve got. We don’t take the time to sit with someone and let them explain what it’s like to have Alzheimer’s, like Lydia did in ‘Still Alice.’ We shouldn’t be afraid of the answers or feeling uncomfortable because that isolates, alienates and unintentionally marginalizes these people who live with Alzheimer’s. Fifty million people in the world have Alzheimers. If I can’t deal with what you’ve got, I’ve just turned my back on 50 million people. In addition to not having a cure and having to live with Alzheimer’s, which is an incredibly difficult journey, you now layer on top of that being excluded from belonging and disappearing from your community.
The Future of Alzheimer’s Research and Finding a Cure
Being Patient: Do you think Alzheimer’s research has come a long way in the last decade?
Lisa Genova: It has, but it doesn’t feel like it. We don’t have any new drugs since Aricept and Namenda. Aricept and Namenda are the two drugs approved to treat Alzheimer’s, but they don’t actually treat the disease, they just help you with your ability to remember and think for a while, while you still have enough neurons working, but they don’t actually stop or affect the disease progression at all. A lot of drug companies have invested billions of dollars in trying to come up with this magic pill. There’s 5.7 million Americans with Alzheimer’s and the Baby Boomers are aging into the highest risk bracket for getting this disease. One in three people will have Alzheimer’s if we live to be 85, fast approaching one in two. There are a lot of brilliant people who have been investing their time and money into this and nothing has come of it, and yet I’m not discouraged.
The technology that we needed to really understand and crack the code for Alzheimer’s wasn’t available to us 20 years ago. Think about what your cell phone looked like in 2000. Technology has exponentially grown in the last 20 years. That has also happened in terms of the tools that we can use in scientific research. The tools 20 years ago for Alzheimer’s research were crude compared to now, and very expensive to use, so only a few scientists could be in the game. Now, the tools are exquisite, precise and exactly what we need to look at the molecular causes of this disease. They’re cheap and fast to use. The clinical trials for the drugs that have been in development have been targeting a protein called amyloid-beta. This protein begins to build up and form plaques in your brain and especially in your hippocampus. If they accumulate to a certain point, it will trigger a molecular cascade that causes the clinical symptoms of Alzheimer’s.
These drug companies have recruited people with Alzheimer’s into clinical trials to see if their drugs work and they’ve all failed. A part of the problem is that maybe the drugs could have worked if the people in those trials had been asymptomatic — people who would eventually get Alzheimer’s but don’t have it yet. These drugs are targeting amyloid, but amyloid would have had to accumulate to the point where you’re now symptomatic. It takes about 15 to 20 years for amyloid to accumulate to a point where you have symptoms of forgetting and memory loss that are diagnosable for Alzheimer’s. Before that, you don’t have any symptoms.
Think of amyloid as a lit match. It won’t cause Alzheimer’s on its own, but when it reaches the tipping point, that match will set fire to your brain, so your brain will be ablaze with Alzheimer’s and symptoms will show up. People had their brains ablaze with Alzheimer’s, but we were giving them a drug that was blowing out the match; it was too late. Those clinical trials weren’t designed properly. It’s challenging to find younger people who want to be in those clinical trials for Alzheimer’s, but data hackers, physicists and imaging experts are starting to research this disease, so I think we’ll see an advancement soon.
We’re so used to thinking of our health from the neck down. We’re all comfortable with heart health. You go to your annual physical, get your blood pressure taken and you get your cholesterol checked. You might be told you need to go on a statin. If you’re pre-diabetic, change your diet; if you’ve got high cholesterol and are at risk for heart disease, exercise, follow the Mediterranean diet or decrease your stress levels. These can all prevent you from getting a heart attack 30 years from now. You might wear the Fitbit device, count your steps.
It turns out we can also work on staying healthy from the neck up. There are ways that we can prevent and reduce our risk of Alzheimer’s through changes in behavior. They’re very similar to heart health; it’s following the Mediterranean diet or doing aerobic exercise; both have been shown to decrease your risk of Alzheimer’s by a third. Sleep is super important; you need slow-wave deep sleep and REM sleep for optimal memory. During that phase of sleep, glial cells — they’re like the janitors of your brain — clear away the metabolic debris that accumulated while you’re in the business of being awake. One of the things that it clears away is amyloid-beta. If you’re not getting enough sleep, that amyloid-beta starts to accumulate and that’s exactly what you don’t want to happen. So sleep, diet, exercise and reducing stress, because stress impacts sleep and what you eat.
Being Patient: Do you think the future of treating Alzheimer’s or other diseases will involve precision medicine and how systems in our body work together?
Lisa Genova: Absolutely. I think that prevention is going to be key, and our involvement and ownership of our health. You don’t want to treat cancer at stage four. You want to catch it at stage one and prevent it. With heart disease, you don’t want to treat it when you’re being rushed to the emergency room; you want to prevent it early. The same goes for Alzheimer’s. The more information we have about the constellation of biomarkers and risk factors that would alert us to, ‘Hey, you have elevated levels of X,’ so you can bring those down, the better. If you have feedback that shows you’ve been working on something for a week and your levels are going down, it could work. We’ve all inherited our DNA from Mom and Dad and you can’t do anything about it. But, you can influence how those genes are expressed. We’re learning more and more about how we live interacts with the genes we’ve inherited. The future of 23andMe will be more like, ‘Here are the constellation of genes you have that we know influence your Alzheimer’s risk, whether they’re protective or not. Here are all the things you can do to tip the scale toward protective.’
The Necessity of Clinical Trial Participation
Being Patient: Do you see ethical issues in involving asymptomatic people in clinical trials to test experimental drugs when public access to reports and journals about the results of prior research is costly and therefore limited?
Lisa Genova: I don’t have a problem with that because, how are we going to discover the cure for Alzheimer’s? There are a lot of families out there right now. For example, there’s a study called the DIAN study (Dominantly Inherited Alzheimer Network) that focuses on the kind of Alzheimer’s I gave Alice in ‘Still Alice.’ So if Mom or Dad has Alzheimer’s, you have a 50/50 shot of inheriting the gene that will cause Alzheimer’s. What’s great about identifying the families who have this, we can take the drugs that are being developed to see if we can prevent Alzheimer’s and give it to folks who are asymptomatic and may get Alzheimer’s. I think it’s going to take citizen scientists who want to create the cure for this disease, who have had grandparents who have been affected.
Being Patient: How do you monitor beta-amyloid before you have any symptoms?
Lisa Genova: You’re not going to today, because it’s too expensive and too invasive. Actually, this is one of the factors we’ve identified as necessary towards getting to a preventive medicine or cure for Alzheimer’s. With XPRIZE, we are launching a competition to ask people to find an earlier diagnostic that is less invasive and less expensive. So right now, if you wanted to know your amyloid levels there are two ways to do it: You get injected with a radioactive label called Pittsburgh compound B. It’s amyloid-beta that’s radiolabeled and attaches to amyloid-beta in the brain; it’s a PET scan that will give an image. There aren’t a lot of PET scans in the world, I think there’s 2,000 in the whole world, and it’s very expensive. It’ll cost you $2,000.
Or, you can get a lumbar puncture. They’re going to stick a needle in your spine and draw out cerebral spinal fluid to see if you’ve got amyloid-beta. That’s also invasive, painful and not reimbursed by insurance. So you can find out, but these numbers tell us maybe a little bit, but not a lot. Again, if you’re over 40 years old, you have elevated levels of amyloid-beta. It takes 15–20 years for this stuff to accumulate to a point where you’ll notice your very first symptoms. We probably all have some levels of it that fluctuate.
This is a dynamic process; it isn’t like your brain is this hunk of a blob of tissue in your skull that doesn’t do anything; it changes every day. Depending on your sleep habits, your eating habits, your stress levels, and your exercise, your amyloid-beta levels will move accordingly. Until you reach that or get close to that tipping point, it’s not useful information. I wouldn’t go and have it done because it’s not going to be useful. I just have to assume that I need to try to live a healthy lifestyle, a preventative lifestyle now, so that when I’m in my 70s and 80s I’ll reap the benefits.
The Path to Publishing and Optioning ‘Still Alice’ as a Film
Being Patient: It’s compelling that you’re a neuroscientist and pushed forward with ‘Still Alice‘ despite people telling you others wouldn’t be interested in the book. What did it take to get ‘Still Alice’ published, and what was it like going to the Oscars after the movie came out?
Lisa Genova: It was beyond amazing! None of this was planned, and I still giggle about it. I can hear my grandmother’s laugh at times because all of this was so wild. I sent 100 query letters when I finished ‘Still Alice’ to literary agents. I was rejected by all of them but four. I still haven’t heard back from one of them. The others who wanted to read the manuscript all declined it; they all thought it was too scary and depressing, or not enough of a readership for a novel about a woman with Alzheimer’s. At that point, I either had to go back to doing scientific research or strategy consulting for biotech and pharmaceutical companies or self-publish it. So, I chose to self-publish it in the summer of 2007 and literally sold it from the trunk of my car, giving copies to people saying, ‘If you’re in a book club, could you please spread the word or post something about it online?’ This was before Facebook, Instagram and Twitter, so there was like MySpace and Shelfari, but Amazon was there, so I said, ‘Please post a review.’ It took a lot of just peddling the book in person — not very efficient. I gave myself a year and eventually, a lot of magical things happened. Word-of-mouth and the recommendation of another author named Julia Fox Garrison led me to an agent who read it and agreed to represent it. She sold it to Simon & Schuster, who then published my book.
Once it was published, I got a film agent, it debuted at number five on the New York Times best-seller list and has been translated into 37 languages. My film agent said that Hallmark and Lifetime were interested and I said, ‘Absolutely not.’ He got on the phone with me and said, ‘Look, this is the best shot you’re going to get. You’ve got a drama starring a 55-year-old woman with Alzheimer’s. Hollywood is never going to make that film.’ I said I would take my chances.
After doing the research for this book, I came to know all these people with Alzheimer’s. I recognized that I had both an opportunity and a responsibility to give these people a face and a voice. These folks aren’t included in what gets talked about when people are brave enough to talk about Alzheimer’s because everyone pictures the end stage and dying. Nobody talks about living with Alzheimer’s and what that looks like or feels like. I wanted to create a global conversation about a topic nobody wanted to talk about, and I knew Lifetime and Hallmark weren’t going to do it. I said no to those opportunities and waited.
Nobody talks about living with Alzheimer’s and what that looks like or feels like. I wanted to create a global conversation about a topic nobody wanted to talk about.
Eventually, these two young producers from London offered to option the book. I took a chance on them. They hired two filmmakers to write the script and direct the film. Shortly after, we got Julianne Moore. When I met the producers from London, I said that’s who I wanted for Alice, and they said they did too. Months before that on a book tour in Australia, I wrote ‘Julianne Moore for ‘Still Alice” in my journal. Years later, I showed her the journal entry and said, ‘Look, I manifested you!’
The producers were friends with Todd Haynes, who has directed Julianne Moore a number of times, and they asked for the introduction. Julianne Moore didn’t have a personal connection to Alzheimer’s, but man, did she do her research. We both come at our jobs in a serious-minded, responsible way. She went to a neurologist and took all the testing as if she was concerned about having Alzheimer’s. She was also mentored by a 50-year-old woman who had Alzheimer’s, was in touch with the Alzheimer’s Association and watched documentaries about Alzheimer’s. The red carpet, the Oscars, that whole thing was bananas. Julianne Moore got nominated and won for every single award that season so I got to go to a lot of events. It just was mind-blowing, amazing, surreal and wonderful.
Being Patient: It’s such a wonderful story of persistence. What are you working on in the future?
Lisa Genova: I’ve written five novels. Right now, I’m doing a little bit of a departure. I’m writing a nonfiction book about memory. Since I’ve been an Alzheimer’s advocate and helping others better understand how to live with this disease for 10 years, I’ve noticed that there’s a lot of concern, curiosity, and confusion about memory, regarding what’s normal and what’s not. People think, why do I walk into the room and I can’t remember why I came in here? Does that mean I’m getting Alzheimer’s? Or you plan to call your mother and then forget to call. Or you are trying to think of someone’s name, but it doesn’t come to you. The narrative-form book should be accessible and easy information to understand what’s going on in your head with respect to memory and forgetting. The next novel I’ll get to as soon as I finish that is about a woman with bipolar disorder.