Banker White’s first feature, Sierra Leone’s Refugee All Stars, followed the titular group of musicians from a refugee camp in Guinea to their home and back again; his second feature, The Genius of Marian, is much closer to home. After his mother was diagnosed with early onset Alzheimer’s, White came back home to help with caretaking. In 2009 he began shooting conversations with his mother for therapeutic purposes, eventually realizing he was working on his next project. Shot over three years, the resulting film was co-directed by White’s wife (then-girlfriend) Anna Fitch.

Arriving in New York in advance of the film’s world premiere at the Tribeca Film Festival, the pair was ready to talk about their long-gestating work. Sitting on a bed in a Fashion District hotel, they completed each other’s sentences and watched each other intently throughout, fittingly focused and synced-up while discussing this family movie.

Filmmaker: This is your first film working together. After working on Sierra Leone’s Refugee All Stars, which has a very global focus, how did you guys settle on working with your family as your subject for a second feature?

White: Well, I’ll tell you how I did, and then how we did. For me, I didn’t choose to do it. I moved home to kind of help out the caregiving situation in a way. My mom had started writing a book about her mother called The Genius Of Marian. And so, she had just been diagnosed, and to help her continue with this book project she was struggling with, one of the things I did to help her as a son was — and also because I was very close with my grandmother — I just started sitting her with a camera, since there wasn’t much writing going on. And it just became this thing that I did with my mom.

So it was very personal. Personal, like I would have been happy and probably continued doing it if the course of what happened with the film hadn’t changed and it was just this film I did with my mom about my grandmother. But then I moved back. I lived in San Francisco, they lived in Boston. I moved back trying to figure what I was going to do, decided ultimately I was going to move in because they needed help. My mom at that point was really depressed about what was going on and my dad needed caregiving help. And I met Anna then. So not only had we not worked together, we were just meeting each other, and she looked at the footage and I think was really moved by it and thought a lot about her family. We talked about how powerful the footage was. My mom was a social worker too —

Fitch: I’d never met Pam. I met her through this footage that was just these video diaries, these interviews that Banker had done. He’d started playing with it and pairing it with archival footage and beautiful music. It was really moving, and we realized there was something really universal to the story even though it was really personal, and started seeing its potential as a documentary.

White: So she’d just finished a film, I was about to move cross-country, we just met, hit it off, and essentially my new girlfriend moved into my parents’ house. We drove cross-country, and I don’t think either of us knew how long you would stay, or whether this thing that I was doing — it still wasn’t the primary reason I was moving home. But then it was a really special period that summer, and my mom just kind of naturally opened up and started talking more about what was happening with her in this filming space. So I think it shifted and became this therapy space for her. And then the project just continued that way and I started interviewing everyone in the family and in a way admitted to myself that this was what we were doing. And it was amazing. One of the best parts of what my mom’s been going through, I think, was working on the film.

Filmmaker: With this kind of footage, there’s possibly an issue with filming someone who’s not in a position to give informed consent. How did you think about this when deciding what to shoot, since it’s an ethical issue everyone has to resolve for themselves?

White: Yeah. And with my mom, she simultaneously embraced the project, thought of it as hers. And she still — like 2009 when she started shooting, through the summer of 2010 — she was still expressing in ways that we could all trust was what she meant, what she wanted to do on a case by case basis. But that was mixed with these really complicated emotions. So in general, she wanted to keep her diagnosis a secret, and at the same time was totally supportive of the film.

In 2010, we started talking about it as a film. It got support, and that was the first interesting time I had to grapple with the fact that it was this project that was going to go out and was going to be seen publicly. And she asked me, the first thing she said — she’s always been incredibly supportive of my work, but in this case it was mixed with her discomfort in having other people talk about what she was going through. Not even thinking about a film having a broadcast and having screenings in festivals and theaters, but just the fact that she had the diagnosis. So I asked her about it a lot, and every time I asked her about it she was even really eloquent. I mean, she was a social worker and said, “I think this can be really helpful to people.”

So I think that through the course of the three years, she’s changed to the point where even processing the complexity of that question would not be something that she could do. So I have to kind of hold on to what it is that she said. And I think also because it’s a family film I have the trust of both my siblings and my father, who I think really appreciated it. And more than that, because she was a social worker, it’s a film that celebrates who she was and what she did with her life, which is help people dialogue and talk about difficult situations.

Fitch: And specifically, when we got Tribeca support in 2011 —

White: Oh yeah. Her response was, “Do you still get to make the decisions?”

Fitch: Or she said, “Are you still in control?”

White: “Are you still in control?” That was this really lucid thing, which I think that has affected both how I made the film and any decision I make about what happens with it. I do really want to make sure that we do still have control about how it’s written about, what kind of distribution path we would take with it, because I thought it was particularly lucid to ask that, making sure that someone else wasn’t going to come in and take control of what became her story.

Fitch: Yeah. Sometimes you think that Pam isn’t understanding what’s going on, and then she’ll come in and say something really insightful and profound, but she slips in and out of it.

White: That’s true up to some of that last stuff we shot in 2012. She could seem totally unengaged, just be rocking back and forth, and then you can engage her and maybe your conversation doesn’t go the way you expect it to. And then sometimes after a 15-minute silence, she’ll come in with this incredibly, perfect, cutting-like-a-razor answer to what you said. And I don’t know what happens in that time, but it is interesting to think about how her mind’s working differently.

Filmmaker: How do you balance the process of making a film on one hand and taking care of the administrative duties while you’re going through this?

White: Yeah. It’s a nightmare. [laughs] This project was really interesting too, because one of the things that happened was that we moved into my parents’ house, so after that the strangeness — I don’t know when the last time you’ve lived in your parents’ house is, but psychologically you kind of go back to who you were as an adolescent. And yet, on the other hand, our life was simplified until we wound up having a kid, which also happened right before we started post-production.

Fitch: I also made a lot of films for broadcast television before this film, and some of my more independent projects. So I wrote a schedule and a budget. We varied from both, but within reason. We had an idea of what this was going to look like, and things more or less fell into place. Impact Partners supported the project, and that really let us just make the film and bring on an amazing editor, Don Bernier —

White: Yeah, on the schedule, instead of waiting for grant cycles. We did continue to get support from a variety of grants. They talked to us about our schedule and what we needed. It’s equity, but it was money that helped us to finish on a schedule that kind of made sense. They came in right after Sundance last year. We did the edit lab that summer. We’d applied in a Good Pitch year, and they announced that we could pitch in the [Sundance] Edit and Story Lab. And we did that a month into starting the editorial process, so we thought we may have been a bit early. I’d cut throughout, but we’d been done for a month. And it was an amazing — it was the perfect time, because we were still open-minded, but we didn’t have a sense of what we felt our strongest footage was. We had a lot of great filmmakers and advisors. It was a very intense almost two weeks, and I think that helped us a lot.

Fitch: We had some powerful material and people who watched it could see the promise in it and were like, “You guys have a big job to live up to the promise of your trailer and your clips.” I feel like the edit lab helped us achieve that.

White: And kind of trusting the pace of it too. We had very loose scenes that were cut at a pace — and I think you do this when you’re not going for a 79-minute movie and you’re just looking at your footage and you’re cutting scenes experimentally. There are scenes that always are a little bit long, because it feels like that’s what the footage wants. I think we got the confidence with this film to be honest about what that experience is like and the reality of my mom’s house. I think we basically learned to believe in that approach, that it was that kind of honest, slow pace that was the best way to tell this story. So I think we wound up leaving like we were further along than we thought we were, which was good for us.

Fitch: And with a personal film, even though Don was a little bit outside the circle, you don’t know when you show it to other people if they’re just gonna think you’re crazy. You’re so wrapped up in your personal film, and then going there it was reaffirming that the film was moving to other people, and that these sort of experimental choices we made were resonating outside out of this little world.

Filmmaker: What were some of those experimental choices?

White: There’s two storylines. One of those is the story of my mom’s book project, and we hold on to that. Not just as this idea that helped inspired the film, but we try to tell that storyline. So it feels more like these very intimate conversations with my mom more than an interview. It’s about her remembering, trying to make sense. So we continue that, what it feels like to be in that psychological space, a parent and a child talking. And there’s simultaneously this linear storyline of what happened over the three years and you see the disease process take shape and her friends and all of us dealing with it.

One of the things we wanted to make sure with a personal film was that there was enough kind of quiet and aesthetically driven material that gave pause for people. Like there wasn’t too much detail that was personal so it gave you space to reflect on what it was about watching this experience of loss or how that might be manifested in your life or experiences you had. So there’s these two storylines, and then there’s these moments — Anna and I, we both like to shoot, too, so as creative people in this house, sometimes we’d be engaging and sometimes we’d step back and watch how quiet the house was and how light would move over the walls during the day and really observing the house and trying to show what we felt like it looked like. So for us I think was fun but it also does give this sense of how time is moving.

Fitch: We’d also do things like use Marian’s artwork with music to just let one of the subtext stories play out and not try to guide it too much. Those were some of our experiments. Some of them stayed and some of them didn’t.

White: But I do think it is this space that helps a very personal film be more accessible. It’s not so chock full of the details of my family history —

Fitch: Or talking —

White: Or talking. And I think that was really important, because I’d never done a personal film before. I am motivated that I want this to be this thing, because I’m very close with my mom, so that is super important to me, but I also think doing in a way that makes people reflect on what it means to have familial relationships and give people space to feel that own experience in their life was important.

Filmmaker: You talked on your Kickstarter about this being an “important film” for educating people about this disease and the stigma attached to discussing it. How do you conceive of the film’s path as a quasi-education document?

White: My brother’s a fourth-year resident at Columbia right now in psychiatry. Kind of built into the film I think you see a family trying to deal with this situation. So part of it is just emotionally what it feels like. I think that with my mom, stigma and her shame and depression as related to her diagnosis was as debilitating as the diagnosis itself. Definitely in the first two years. And then my brother, because he has a medical background, the film does offer an interesting look at how people make medical decisions. So we get to do that without breaking this family narrative. We get to have a little medicine in practice.

I bring up that because my brother started using excerpts from the film at the med school, in the third-year clerkship with one of the neurologists there, and it went incredibly well. We just met at Columbia yesterday with the dean of public health, someone from the med school, and someone from narrative medicine. I think that in that arena, there seems to be a lot of interest in showing what disease looks like outside of a clinical environment. And then besides that, speaking as someone who — when I found out my mom was diagnosed — really craved seeing how other people were dealing it, and I can see the same just from the reaction to putting up the trailer online.

They say right now one in every eight people over 65 has Alzheimer’s. Over 80, it’s 50% of the country, over 5.4 million people. So if you extend that to someone being related to that person with the aging demographics in this country —

Fitch: This affects almost everybody, even if it’s one step removed.

White: The Huffington Post called it two weeks ago the largest public health crisis in the US. The fact also that it is mental illness and there is stigma attached to it — when you hear those numbers, I think it’s shocking that there’s so little understanding about the disease, and the disease path, and what you need to know, how you need to plan for it, how you need to plan for the health care. For the general public, I think there’s information in it. Even more than that, I think it’ll be a real conversation starter. And I say that because some people, I think, don’t want to go online and read about it if it’s in their family because everyone’s terrified of the idea that you would lose this person you love or, if you’re the person, you’re worried it’s going to happen to you. You’re going to lose your identity, everything that makes you who you are. So the stigma is both societal and fear-based.

This film is also about love and family and connectedness and watching how people navigate the desire to stay together through the disease process. So I think that that in and of itself will be helpful for other people who are going through it.