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In ‘Still Alice,’ a neuroscientist-novelist explores what it’s like to live with Alzheimer’s

Confronted by her own grandmother’s illness, writer and neuroscientist Lisa Genova started her exploration of Alzheimer’s with one question: What does it actually feel like to have the disease? Her resulting novel, “Still Alice,” was adapted into a film that has been nominated for an Academy Award. Jeffrey Brown interviews Genova about why she turned to fiction.

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  • GWEN IFILL:

    A new film, and the book that inspired it, are getting high praise this awards season for the spotlight they cast on the toll of early-onset Alzheimer's disease.

    Jeffrey Brown looks at the film and its subject, part of our occasional feature, NewsHour Goes to the Movies.

  • JULIANNE MOORE, Actress:

    Man has an instinctive tendency to speak, as we see in the babble of young children.

  • JEFFREY BROWN:

    When we first meet Alice Howland, she's 50 years old, an accomplished professor of linguistics, but something is beginning to happen.

  • JULIANNE MOORE:

    I hope we convince you that by observing these baby steps into the — into — I — I knew I shouldn't have had that champagne.

  • JEFFREY BROWN:

    We watch as Alice loses words, gets lost in familiar places, forgets appointments. Eventually, she's diagnosed with early-onset Alzheimer's.

  • JULIANNE MOORE:

    Why won't you take me seriously?

  • JEFFREY BROWN:

    It's an up-close and sometimes raw portrait shown from the perspective of someone with a disease that today affects more than five million Americans, including 200,000 who experience early onset.

  • JULIANNE MOORE:

    Sometimes, 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.

  • JEFFREY BROWN:

    Julianne Moore, who plays Alice, earned an Academy Award nomination for her performance.

    The movie is based on a novel by the same name. It's written by Lisa Genova, who trained and worked as a neuroscientist before turning to fiction.

    And Lisa Genova joins me now. Welcome to you.

    And maybe we could start there. Why fiction? Why was that the way to tell the story?

    LISA GENOVA, Author, "Still Alice": Well, it's a strange thing for a neuroscientist to turn to, right?

    My grandmother had Alzheimer's. And as the neuroscientist in my family, I read everything I could find about Alzheimer's to better understand what she was going through and to be better caregivers to her.

    And it helped, but yet everything I read was written by the perspective of the outsider looking in, so they were written by clinicians, scientists, caregivers, social workers. And the piece of information that was missing was an answer to the question: What does it feel like to have this?

  • JEFFREY BROWN:

    From the person, from the victim's point of view.

  • LISA GENOVA:

    Yes.

    And I understood that knowing that answer was what I really need to stay connected to my grandmother. And somehow I had this intuitive understanding that fiction and literature are places where we can explore empathy and have the chance the walk in someone else's shoes. And so that was really the seed for the book.

  • JEFFREY BROWN:

    And your decision to focus it on a relatively young woman and an extremely intelligent woman, in fact, a woman who works with words and language, why that route?

  • LISA GENOVA:

    So focusing on somebody who 50, rather than someone who was in their 80s, like my grandmother was, was a very conscious choice.

    I think that I am like a lot of people, in that my initial sort of picture of Alzheimer's, if you would ask me what does it look like, I pictured as sort of, this is the disease of the dying elderly.

  • JEFFREY BROWN:

    Right.

  • LISA GENOVA:

    Alzheimer's is someone who is in their 80s, who is in a nursing home in end stage. You picture end stage Alzheimer's. What does living with Alzheimer's look like?

    And for writing this book, I wanted to understand the perspective of Alzheimer's from the very first symptoms. And so the people that I came to know when I was doing research for the book were people living with early-onset Alzheimer's who could describe what it feels like from the very first, like, oh, where did I put my keys, and they were in their 40s, 50s and 60s.

    And they're not included in what gets talked about when people talk about Alzheimer's. And so I was hoping to give living with Alzheimer's a face and a voice.

  • JEFFREY BROWN:

    And, of course, the drama of that is just…

  • LISA GENOVA:

    And it raises the stakes, sure.

    And so we all sort of place so much worth and identity in what we do for a living. And if that gets stripped away, if you're someone like Alice and you have put all of your worth in thinking, and you can't do that because of Alzheimer's, because it robs you of memory and cognition and language, then who are you and how do you matter?

  • JEFFREY BROWN:

    All right, I want to show a short clip. This is Alice with her children. And they all know about her Alzheimer's at this point. But they're — it kind of shows how they're still trying to go on in a sort of normal way. Let's look at that.

  • LISA GENOVA:

    OK.

  • JULIANNE MOORE:

    Olivia, what time is your play?

  • KRISTEN STEWART, Actress:

    Eight o'clock.

  • SHANE MCCRAE, Actor:

    Olivia, you nervous about tomorrow night?

  • KRISTEN STEWART:

    Yes. I will be fine once I'm up there, but I will definitely have to blot all of you out.

    (LAUGHTER)

  • JULIANNE MOORE:

    I'm sorry what time did you say it was again?

  • KRISTEN STEWART:

    Eight o'clock.

  • KATE BOSWORTH, Actress:

    Mom, you don't have to schedule it. It's OK.

  • JULIANNE MOORE:

    No, no. I want to put it in. And where is it?

  • KRISTEN STEWART:

    The Saugatuck Theater.

  • JULIANNE MOORE:

    Can you spell that?

  • KRISTEN STEWART:

    Yes, it's S-A-U…

  • KATE BOSWORTH:

    Mom, it's not like we're going to forget to bring you.

  • KRISTEN STEWART:

    Just let her do it. It's S-A-U-G-A-T-U-C-K.

  • HUNTER PARRISH, Actor:

    You're not helping.

  • KATE BOSWORTH:

    No, you're not helping. Why should she worry about remembering something that she even doesn't have to remember?

  • KRISTEN STEWART:

    If you just let her do it, she won't worry. What's the problem? You don't have to talk about her like she's not sitting right here.

  • KATE BOSWORTH:

    I'm not. I'm talking to her.

    Aren't I, mom?

  • JULIANNE MOORE:

    Yes. Yes, you are.

  • JEFFREY BROWN:

    It goes to the question of how the person and the families cope together. Do you find that people withdraw or do they want to stay connected? How does that dynamic work?

  • LISA GENOVA:

    You see both.

    I think that everyone who is touched by this disease goes through the stages of grief. You're sort of losing the relationship that you had with the person with Alzheimer's, and so you go through denial and anger and bargaining, and hopefully ultimately acceptance.

    But not everyone goes through those stages at the same rate, at the same time, so you get a whole family in the room and you have got dad, who is in denial, and a sister who is bargaining, and a brother who is angry. And you're all trying to have a conversation about someone you love, but you tend to kind of miss each other.

    Some people stay in denial and retreat. It's really terrifying and heartbreaking. And a lot of people have hard time showing up in the sort of new reality, whereas others, you know, surprisingly — even surprisingly, come, step forward, and someone like Lydia in the movie who no one would expect.

  • JEFFREY BROWN:

    And you see — it's still Alice, right? Alice knows that she's Alice, but in many ways she's not. So, you see the confusion. You also see some of the shame. Right? Is there still a stigma, you think, attached?

  • LISA GENOVA:

    Oh, absolutely.

    And this is fortunately one of the things that the book and now the movie are helping to eliminate in kind of in a big way. So, yes, there's a lot of shame and stigma and alienation associated with Alzheimer's. People tend to retreat and not talk about this. It's a lot like cancer was, like HIV was.

    It's an easy population to ignore in some ways, and yet if we're going to ultimately have Alzheimer's survivors in the hopefully in the near future, we need to begin to talk about this and get rid of that shame and stigma.

  • JEFFREY BROWN:

    So you do think of the book and now the movie as almost teaching tools, even while telling an entertaining story at the same time?

  • LISA GENOVA:

    Oh, yes. Well, you know, fiction and film, they're accessible.

    If I as a neuroscientist had written a nonfiction book about Alzheimer's, or if I stayed in the lab and continued to do brain research and I publish in "The Journal of Neuroscience," you're not going to read that article.

  • JEFFREY BROWN:

    Probably not.

  • LISA GENOVA:

    So — no. So this is a way to make this sort of scary, upsetting topic accessible to people, where people can gather in living rooms over wine and cheese and book clubs, or go to the movie theater, and now see a very vivid example of what living with Alzheimer's looks like, and can realize that you're in the alone in this.

    Five — over five million Americans are going through this right now, and historically we have not been talking about this.

  • JEFFREY BROWN:

    And I assume you're hearing that from people, that kind of reaction you're getting?

  • LISA GENOVA:

    Yes, absolutely. And it's worldwide. I'm hearing from people living with Alzheimer's in Australia, Canada, the U.K., all over the U.S. It's really rewarding.

  • JEFFREY BROWN:

    All right, the book and movie, "Still Alice."

    Lisa Genova, thank you very much.

  • LISA GENOVA:

    You're welcome. Thank you.

  • GWEN IFILL:

    There's more with Lisa Genova. She talked to Jeff on how to spot the early signs of Alzheimer's. Watch that on our home page, PBS.org/NewsHour.

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