UnRavelled comes to UW–Madison

By Jordana Lenon

On April 12, playwright, actor and producer Jake Broder gave a talk about UnRavelled, his play about Anne Adams and her primary progressive aphasia linked to frontotemporal dementia, to graduate students and faculty at the UW–Madison School of Medicine and Public Health.

Frontotemporal dementia takes away linguistic abilities. Broder’s lecture was hosted by the SMPH Neuroscience Training Program and the Wisconsin Alzheimer’s Disease Research Center’s Research Education Component (REC), with faculty organizers Marina Emborg, M.D., Ph.D. and Barbara Bendlin, Ph.D.

Jordana Lenon interviewed Broder about the play:

How did you find yourself here at UW–Madison talking to our Neuroscience Training Program students?

I met Marina Emborg at the Tau Consortium in Dallas last year and she got very excited and asked me to visit and give a talk. So here I am, and what was supposed to be a short lunch with the students today turned into two hours – they had so many great questions. The more I see of this university community, the more I see how amazing it is and I wonder, is this the kind of place where we could perform the play live someday?

What inspired you to write a play about Anne Adams and her primary progressive aphasia?

I was listening to a Radiolab episode about Anne, her doctor Bruce Miller and Maurice Ravel. I was struck by the idea that there could be a disease that has not only degeneration but gives you something before it kills you — something that enhances a part of you before being destructive. I found that extraordinary. It really blew my mind. I wanted to share that feeling with an audience.

I began studying the subject and everything pointed to Dr. Miller at the University of California San Francisco as one of the world’s most foremost authorities in frontotemporal dementia. So I wrote him a fan letter and to my delight, he wrote me back. We struck up a conversation and he sent me this textbook on neurocircuitry. It took me some time with a dictionary to read through it and then, after more questions and conversations, he said come up and be the Hellman visiting artist at UCSF and I accepted. I met everybody – Bill Seely, Maria Luisa Gorno Tempini, Virginia Sturm, all these extraordinary researchers. The spirit of that place is majestic, just exquisite, the depth of inquiry combined with the compassionate patient care coexisting. I’ve never seen anything like it in the world and I thought this is something worth championing.

So I wrote a script, started over, and tried again. The pandemic was helpful because it was focused writing time, but it was unhelpful because this is a staged play. We filmed it and created an online version, generously funded by the Global Brain Health Institute. And the magic, the secret sauce with this close-up online filming was the quality of actors we had. They were incredible theatre actors and film actors, and they were able to chart the course of the disease and their relationship through close-up shots.

Do you have any plans to stage UnRavelled live?

Yes, this July 21 in San Francisco, with a symphony. We’re going to try to do an immersive experience where we create a neurological reality of what’s happening inside Anne’s mind, with the paintings, the brain scans and the settings… so it all sort of melds.

How have viewers reacted to the play?

People have told me that, even though it’s not all that sweet, perhaps it’s bittersweet. The object of this is to bring something that feels like the darkest part of us into the light and say it’s okay, and that there is something not only okay about it, but perhaps something even a little hopeful about it.

Is Robert not only Anne’s husband, but is he also asking the questions that the audience is asking as well about our loved ones with dementia?

Robert transitions from husband to caregiver and that is a huge transition. The threshold is diagnosis. When you are living with somebody with this, it’s one thing before you’re diagnosed, and then it’s something else. First, it’s the misinterpretations of behaviors pre-diagnosis. We assume volition, which is not necessarily a bad thing, it’s just how we are. But that means we find psychological reasons, emotional reasons and we attribute those factors first before we look at something else. We do not want to admit that we are not in control of our actions. So pathologizing behavior is not the first thing we leap to. We may think or say, “You’re blurting something out. Why are you doing that? Do you not respect me?” We think of all these emotional, relational reasons why this behavior could be taking place. A neurological condition is not the first thing we think of – it’s usually the last.

Part of Robert’s journey is making every mistake in the book, until he gets to the place where diagnosis is undeniable. And then it becomes a whole different battle – one of how to reckon with the truth. Jennifer Merrilees, Anne’s nurse who is still at the GBHI, said there is a perceived threshold of care where people say, “I can deal with this and I will be the caregiver, that’s fine, but if they ever don’t know who I am, I would have a hard time continuing.” That appears to be people’s red line. And having a character who struggles with those things is kind of the point of this story. But Anne’s superpower is that her transmodal ability, her cognitive reserve, her life as a scientist and then her life as a painter showed all the different ways she communicated and what she was able to do with the onset of different abilities. She was even able to come back with a symbolic gesture that communicated to Robert, “I love you, I recognize you, I’m here.” She was able to do that without language. She is able to say I’m still here past the point where Robert is unsure if she really is. So maybe we’re all still there… until we’re not.

Can you explain what a term you use in the play, “workaround”, means?

Neuroplasticity is a hard thing to explain. I read about a patient who had a speech problem and while comprehension was possible, speaking was not. But he could sing what he wanted to say. And that tells you that communication can be achieved through different means and we have the ability to switch or be guided. There are many ways to reach the destination and perhaps we can train ourselves to switch modes if one mode isn’t working. We can speak in images, sounds, gestures, movement. All these things are ways of transmitting language. We are rather amazing.

My mom is in hospice with advanced Alzheimer’s disease and acute heart failure complications right now. At one point, Robert admits a very difficult thing that many of us have also felt and even expressed – that you wish your loved one would die and be at peace because you don’t want them to keep suffering. You’ve already said goodbye and grieved since they are not the person you know anymore. But you feel so much guilt thinking these thoughts. 

This is a story about transformation. But I also think it’s everybody’s story, more than we think. Yes, there is the loss of certain things, but certain things are preserved, and certain modalities are preserved if you keep the connection up. As frontotemporal dementia is to creativity, perhaps Alzheimer’s is to empathy. It’s the counterbalancing neurocircuitry that is perhaps enhanced a little bit. When FTD takes away linguistic abilities, then visual, musical, other forms may take over. With Alzheimer’s, studies show that empathy is enhanced in some people, or at least empathy is the kind of thing one can lean into to keep connections alive. 

Is there anything else you’d like to share?

This play is about human connection. What we have learned is that not everybody with FTD is going to become an artist, but people who have FTD might have an easier time drawing their thoughts rather than speaking them. The practical applicability of this is that if you think about nonpharmacological interventions and the goal is to keep the channel of communication open between patients and those who live with them and care for them, then that leads to people being valued and being treated as people, rather than objects, for longer. That’s a better health outcome for everybody. The idea is that people who apparently have language shut off have perhaps other modes they could use to communicate. And that’s not a hugely sophisticated or even a complex thought. We do that as kids. There are many ways to connect.

Jake Broder is a playwright, actor, producer, TV writer, and current Atlantic Fellow at the Global Brain Health Institute.

Marina Emborg is the director of the UW–Madison Preclinical Parkinson’s Research Program, a senior scientist at the Wisconsin National Primate Research Center (WNPRC), and professor of Medical Physics, UW–Madison School of Medicine and Public Health.

Jordana Lenon is the communications and outreach program manager at the Wisconsin National Primate Research Center, University of Wisconsin–Madison.