Brains and hearts

"Determined" is a smart, compassionate look at the stories behind UW’s long-term Alzheimer’s study

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As the daughter of someone who died from dementia-related causes, a film about Alzheimer’s disease is not going to be an easy watch. But I know I am not alone. According to UsAgainstAlzheimer’s, 5.7 million Americans are living with the disease right now. Those of us who cared for relatives with dementia know how truly awful the disease can be, and our greatest fear is that it will happen to us.

No matter what your experience with dementia, I believe you should make a point of watching Determined, the smart and compassionate film that documents the groundbreaking research happening at UW-Madison. The film features subjects enrolled in the 20-year clinical trial of adult children of parents who died from Alzheimer’s, called Wisconsin Registry for Alzheimer’s Prevention (WRAP). At the heart of the movie are stories of compassion and resilience. The all-female filmmaking team gained intimate access to families struggling to care for partners and parents with dementia. They are participating in rigorous studies to try to document changes in their cognitive abilities to help researchers gain knowledge about how to prevent the disease.

Determined was part of an extraordinarily strong lineup of documentaries slated to premiere at the April Wisconsin Film Festival. Its screening was cancelled, like everything else, due to concerns of spreading COVID-19. But, thankfully, in the era of social distancing, UW Cinematheque and the festival have been pairing up to offer virtual screenings of some of these gems. Determined will screen from Dec. 10-24. To receive instructions on how to view the movie free, send an email to info@cinema.wisc.edu. Be sure to include the code WFF in the subject line. 

The initial idea for Determined came from the film’s producer, Therese Barry-Tanner, a participant in the WRAP study whose mother died from Alzheimer’s several years ago. Barry-Tanner, who lives in Green Bay, retired from a corporate job, and hatched the idea for the film after traveling to Madison for a study visit. “I was talking to one of the coordinators about how I lost it after my mom died. She said, ‘You’re not the only one who feels the things you are feeling.’ It just triggered something in me, and I got it in my head to do a film about people as caregivers and research participants.”

Barry-Tanner approached another Green Bay resident, Eileen Littig. An award-winning independent producer, Littig spent years producing TV documentaries Northeastern Wisconsin In- School Telecommunications, many of them about teenagers. As she grew older, she worked with her daughter, director Melissa Godoy, on the documentary Do Not Go Gently, narrated by Walter Cronkite, which highlights the stories of artists over the age of 85. 

Littig says Determined is a film about “the importance of science.” She says she hadn’t heard about the WRAP study until Barry-Tanner approached her. “There is no cure for Alzheimer's disease,” says Littig. But, she says, we have seen significant advances in COVID-19 vaccines, cancer and heart disease research, so there’s reason for hope. “I just respect the people in the WRAP project. They are human subjects who give their bodies and minds to science. The characters in the film have spent all these years doing it, and they are totally committed to finding something to cure Alzheimer's.”

The film focuses on three families, all with at least one member in the WRAP study. It does an excellent job of walking the viewer through the science, introducing us to some of the leading researchers, and showing brain scans and close-ups of participants undergoing rigorous cognitive testing. “We want to know who goes on to develop dementia and who doesn’t,” the study’s principal investigator, Sterling Johnson, says in the film, “We want to be able to prevent this disease, identify it, and know if there’s a drug or lifestyle change that would prevent dementia.”

But what lifts Determined above the level of most science documentaries is the storytelling. The intimacy is powerful, as if the families have invited us into their homes. As the film begins, we meet a family in Spooner, Wisconsin, caring for Irene, an emaciated woman with advanced Alzheimer’s. Her husband, Doren, couldn’t stand to have her in a nursing home, so he brought her home, taking on the significant burden of caring for her physical and emotional needs. Doren and Irene’s three daughters appear on camera, too, sharing how they were apprehensive about bringing her home, and insisted that their father bring in a professional nurse to assist. Doren and Irene have been married for 59 years. “I guess I feel the same about her, just gotta keep on loving her and taking care of her,” says Doren.

In Milwaukee, Karen, an African American woman, works full time, raises her son, and grieves the loss of her mother to Alzheimer’s. Through Karen, the film gives a glimpse into the work of Milwaukee Outreach, an organization seeking to recruit more Black volunteers for medical studies. Determined does an excellent job of highlighting historical injustices and current disparities that contribute to unequal outcomes in health care.

We watch another couple, Sigrid and David, argue good-naturedly as they purge their closet of books, furniture and memorabilia. They don’t want to leave it until they are unable to do it themselves. They are both research participants; he is in the control group, and she, as daughter of someone who died from Alzheimer’s, is deeply worried that she will develop it. Her eyes fill up as she describes losing patience with her mother. 

In addition to Littig’s vast experience in documentary making, the film benefits from the deft direction of Godoy, an adjunct professor at the University of Cincinnati. Godoy has worked closely for years with a towering figure in documentary making, Julia Reichert, who visited UW Cinematheque for a retrospective in November of 2019. Godoy calls Reichert a “wonderful mentor.” They worked together on a number of films, including the Oscar winner American Factory, which tracked the retooling of an Ohio auto plant.

In addition to working with her mother on Do Not Go Gently, Godoy also has created short films with the staff and patients at an adult daycare. The nurse in that facility went on to become the sound person on Determined.

When Littig and Barry-Tanner approached her about directing a film on the WRAP study, Godoy felt the project was the next logical step for her. “Because I was already in that world, being there felt normal to me, and Therese had been through that. So there was none of that fear of stigma,” says Godoy. “We asked the subjects to ignore us. We just said we are going to film your lives. These people really wanted to be a part of it, and they were game, allowing us to be a part of their lives.”

The crew followed the three families for five years, through triumphs and tragedies. They kept the crew as small as possible to reduce disruption. Barry-Tanner learned how to run sound so she and Godoy could be the only people joining families in these intimate moments. And during and after, she applied her significant energy to promoting and fundraising for the film. Despite pandemic challenges and myriad cancellations, she is still working to secure a streaming or distribution deal.

“One of the goals is not to ‘other’ this person with the disease, which happens a lot,” says Barry-Tanner. “Some people will say ‘That’s not my mom anymore.’ Well, that’s how you feel, but maybe she just can’t express herself the way she used to. Music is one thing that shows that people can connect.”

Barry-Tanner says Godoy introduced her to the idea of “verite,” or following the action as it unfolds. “I knew what I wanted to do, to follow the families and capture those moments,” says Barry-Tanner. We didn’t have scripts, but we’d catch up with them and the researchers once or twice a year."

Godoy admits that the film has difficult moments, but overall she believes it strikes a good balance. “We hope that after people watch the film they feel hopeful and strengthened and energized that they can do something to change the trajectory of the disease,” she says. Already, the film shows, the research is showing a strong correlation between exercise and dementia prevention. Littig, who is in her 80s, walks five miles a day. And, of course, having a diverse group of study participants is key to scientific breakthroughs.

“People can build up their brains, and individuals can create some resilience. Another way is you can join a clinical trial,” says Godoy. “And people can have more compassion for families that are going through this. We want future generations to have a better understanding of dementia.”