Karen just buried her mother who had Alzheimer’s. She is enraged with grief and trying to rise from the ashes. She fears she has neglected her teenage son after years of caring for her mother.
Barb drives five hours each way to help her sisters and her aging father care for her mother, who is living at home with late-stage Alzheimer’s.
Sigrid, 72, is afraid she has early Alzheimer’s. Her mother died of the disease, and she is determined to fight back with exercise and healthy eating – much to the chagrin of her husband.
You now know the script for a new documentary, “Determined: Fighting Alzheimer’s,” financed in part by multiple Wisconsin organizations — including Bader Philanthropies Inc. in Milwaukee — and directed by award-winning Cincinnati filmmaker Melissa Godoy, which premieres April 6 on PBS’ NOVA.
Filmed over five years – and 10 years in the making – the independent documentary portrays the stories of three Wisconsin women. They are among 1,700 people enrolled in the Wisconsin Registry for Alzheimer’s Prevention (WRAP), one of the world’s largest and longest-running studies of people at risk for Alzheimer’s disease.
Simply put, the film is about the quest to find a cure for Alzheimer’s as told by human research subjects in a medical study. But unlike other Alzheimer’s documentaries, this one is told from an intimate angle. The film crew was embedded with each family for years as they experienced important moments in their journey.
It makes for powerful storytelling, Godoy said, but it is not depressing.
“There were definitely sad moments and challenging moments, but you will smile, laugh – and there’s hope,” said Godoy, who was director, cinematographer and editor.
The film weaves in explanations from researchers at the University of Wisconsin. Dr. Mark Sager founded the groundbreaking study in 2001. Scientists are following subjects over 15 to 20 years, collecting data such as cognition, lifestyle, physical activity and genetics.
But besides the science, the film shows the human toll that Alzheimer’s disease has on patients and their families as well as their perseverance to keep going and find a cure.
Filming in an observational style, Godoy and her team used their cameras to zoom into the plot line of each family, making multiple trips to each of their homes. Each is in a different stage of coping with Alzheimer’s disease.
“We were telling present-tense stories as they unfold over time,” Godoy said. “Part of what you look for in the story are how do people change over time? What are their challenges? How do they overcome challenges?”
It is a story that resonates with many. According to the Alzheimer’s Association, 6.5 million Americans are living with this progressive disease that affects memory, thinking and behavior. That is expected to double by 2050. Less known than statistics, though, is the burden of Alzheimer’s and other kinds of dementia on caregivers and the health care system.
Between 2013 and 2018, Godoy became close to her subjects, observing and filming as a fly on the wall. She made trips to the rural Spooner home of the family where a husband and three daughters – daughter Barb is followed in the documentary – care for a woman with late-stage Alzheimer’s.
It is a rare view of this stage of illness. There was a crew of two: Godoy and her producer, who was sound engineer.
Godoy learned just how demanding it is for a family, noting that it can destroy families or make them stronger.
“They’re just normal people with flaws, like all of us,” Godoy said. “But the way that they came together to care for their mother is a beautiful example of what’s possible.”
The principal investigator in the study, Dr. Sterling Johnson, has a big role. But the creators had to be careful when they filmed the participants’ assessments at the UW hospital because participants’ data must remain anonymous.
“Even when we filmed the cognitive testing, there were certain things we couldn’t show because the tests themselves could be gamed or copied and skew the study,” Godoy said. “We had to be careful not to do anything that would harm the actual validity of the study.”
Godoy has worked in production for 30 years – 28 of them in Cincinnati. The Wisconsin native owns her own company, Cinema Sol, and is a founding member and board member of Cincinnati’s Women in Film.
An adjunct professor at the University of Cincinnati College-Conservatory of Music, she recently gained a new title as managing producer of CCM digital. During the pandemic, she became essential to the arts and media school as it began producing digital programs and live streaming concerts when in-person gatherings were not allowed.
Locally, Godoy has produced films about late Cincinnati Pops conductor Erich Kunzel, Music Hall’s historic organ panels and Cincinnati Opera’s “Opera Fusion: New Works” projects. She’s proud to have been line producer for the Oscar-winning documentary feature, “American Factory,” by Steven Bognar and Julia Reichert (Netflix). She was also line producer for their Emmy Award-winning documentary, “A Lion in the House” (Independent Lens).
With her mother, Eileen Littig, Godoy co-produced the 2007 documentary about creative aging narrated by Walter Cronkite. “Do Not Go Gently” aired on PBS for 12 years through American Public Television.
Just before “Determined,” Godoy did some creative work in Cincinnati at a day care for people with Alzheimer’s disease at Mercy Health West Park as well as at Twin Towers in College Hill.
“I learned something about creativity and Alzheimer’s disease, that creativity and imagination are available for anybody at any age,” she said.
Those experiences not only prepared her for “Determined,” but she met nurse manager Amy Kruep, who taught her how to communicate with people who have Alzheimer’s. In exchange, Godoy taught Kruep some production skills.
Kruep became part of the sound crew of “Determined.” The other sound recordist was Shawndra Jones, a news broadcast director at WBDT and WDTN-TV in Dayton, who was most recently a sound recordist for “Dave Chapelle: This Time This Place,” directed by Bognar and Reichert.
The seed for “Determined” began in 2011 with Green Bay resident Therese Barry-Tanner. She was a caregiver for her mother, who died of Alzheimer’s disease. She is also a participant of WRAP.
With the pain of her family’s ordeal still fresh, Barry-Tanner believed that the story of how Alzheimer’s disease affects families needed to be told. She approached an independent producer in Green Bay named Eileen Littig – Godoy’s mother.
Out of the blue, Godoy got a phone call.
“Therese needed some guidance,” Godoy said. “And my mom said, ‘Oh, I know someone who would really like to help you.’ And recommended me. Then we got started, but we had no money.”
Barry-Tanner, who worked for more than 30 years in project management for Humana, and Littig, then retired, ended up as co-producers of “Determined.” Both are donating their efforts.
Barry-Tanner was instrumental in obtaining funding, the largest coming from Bader Philanthropies in Milwaukee. That inspired many others to give, including the Green Bay Packers Foundation.
Supporting innovative programs that enhance lives for older adults, including those with Alzheimer’s, has long been a part of Bader Philanthropies’ mission.
“Over a decade in the making, we are thrilled to see ‘Determined: Fighting Alzheimer’s’ debut tomorrow night on PBS,” Bader Philanthropies president and CEO Dan Bader said. “The documentary filmed entirely in Wisconsin offers an intimate look at the challenges faced by individuals diagnosed with Alzheimer’s and the caregivers who have or continue to care for them. Therese Barry-Tanner, Eileen Littig and Melissa Godoy’s commitment to curating these human stories will help others see they are not alone and we need each other.”
Over the course of the film project, Bader Philanthropies awarded two grants totaling $120,000. It was not alone in providing funding.
“We got donations from Catholic priests, the Jewish Federation in Dayton, Oneida tribal nation in Wisconsin, small manufacturing companies, and people who donated $10 or $25,” Godoy said.
Because of the pandemic, it didn’t have the usual trajectory of screenings at documentary film festivals. Most of it was online. An in-person screening at the Over-the-Rhine Film Festival last July at Ziegler Park was rained out.
“No one knew this was going to get to NOVA, yet we had a whole army of people believe in us and keep us driving forward,” she said.
Godoy is quick to thank Lizanne Rouillard, vice president of Filmoption International, who would become the distributor, and the Center for Independent Documentary, their fiscal sponsor. There was also support from the Camera Department, Cincinnati film industry’s home for renting high-end cameras, in Blue Ash.
Godoy, whose work has appeared on PBS before, is ecstatic that NOVA will premiere “Determined.” NOVA will also stream it online and their distributor will market it globally in several foreign languages.
She hopes the film will motivate everyday people to participate in Alzheimer’s disease research, which needs more volunteers for clinical trials.
Ultimately, “Determined” might help remove some of the stigma of Alzheimer’s disease because, she said, “Just living with these families for an hour, you realize, this is all of us.”
ON THE AIR
What: NOVA “Determined: Fighting Alzheimer’s”
When/where: 8 p.m. April 6 on WMVS-TV (Channel 10.1); 9 p.m.. April 10 on WMVT-TV (Channel 36.1)