Documentary faces the reality of Lewy body dementia

Soprano Renée Fleming, cellist Yo-Yo Ma and actor David Hyde Pierce share more than their notable careers; they are also co-executive producers of "Facing the Wind," a new documentary spotlighting Lewy body dementia. The film, streaming here, follows three couples as they face the intense challenges of this form of dementia, testing their vows of enduring love and commitment “in sickness and in health.”

Lewy body dementia affects cognition, movement and behavior. Symptoms often include memory problems, confusion, tremors, muscle stiffness, slow movement, hallucinations, paranoia, depression, anxiety, sleep disturbances and fluctuations. Lewy body dementia, the second most common form of progressive dementia, affects more than 1.4 million Americans, but is still not widely known and understood, explains Mary Lou Falcone, co-executive producer of the 60-minute documentary.

“Seeing real people in real life is the most dramatic and powerful way to better understand the disease and see how differently it impacts individuals and their families,” says Falcone, author of "I Didn’t See it Coming," a memoir about falling in love with her husband, Nicky Zann, and caring for him when he was diagnosed with Lewy body dementia.

Hyde Pierce was so inspired by the couple’s courage, strength and love during their experience together that he became a co-executive producer of the documentary along with Fleming and Ma. “I hope families who are dealing with Lewy body and other dementias will see the film, and I hope families who haven’t been touched by dementia will find understanding and compassion and be inspired by the heroes in the film to join the cause,” says Hyde Pierce, who has lost family and friends to Alzheimer’s disease and vascular dementia.

The documentary team began filming in December 2021 with a focus on three couples: Curry and Linda Whisenhunt, Patrick and Carla Preyer and Jim and Linda Szypula. The story centers on the male patients living with Lewy body dementia and their wives, who are their primary caregivers.

Of the three men, Curry has been living with Lewy body dementia the longest, for more than a decade, and is considered an outlier. The average life expectancy for someone diagnosed with Lewy body dementia is typically five to eight years after diagnosis. Curry, who has responded well to medications to stabilize his mood and hallucinations, facilitates a patient support group and started chronicling his life on Facebook. He later teamed up with Linda Szypula to produce a national podcast called the "Lewy Body Roller Coaster."

The documentary follows the Szypulas as they embark on a road trip in their RV, traveling from New Jersey to visit families affected by Lewy body dementia. “The road trip felt like a wonderful last adventure for Jim and Linda to enjoy the time they had left,” says Deirdre Fishel, director of “Facing the Wind” and professor of film and video production at City College of New York. “Jim was at that point where he really knew that his disease was progressing and he was struggling.”

Six months after the road trip, Jim unexpectedly passed away. Patrick died just four months later, with Carla by his side holding his hand.

“Both Jim and Patrick passed away suddenly, which can happen with Lewy body dementia,” Fishel says. “Their deaths were shocking, as we had plans to visit them shortly before it happened, but the decline was rapid and unexpected. It wasn’t a conscious choice not to show their final stages.”

The documentary includes scenes from Patrick and Carla’s wedding in 2001, 10 months after they met on a blind date. Patrick, an operating room nurse, started experiencing symptoms in 2012 that included hand tremors and fainting episodes. Later, he would forget what tools he needed to provide the surgeons during an operation. He retired from nursing in 2014.

“Through the hospital, we were able get tests done, including a PET scan, which showed the Lewy body tangles in his brain,” Carla remembers. “The diagnosis came as a relief and a shock.”

Carla found the Lewy Body Support Group for Spouses group on Facebook to educate herself about the disease. She and a few of the other caregiver wives set up a weekly Zoom call. Eventually, the wives planned a respite care weekend in Kansas City, Mo., filled with laughter, tears and lasting friendships, all captured in the documentary.

When dealing with hallucinations, Carla learned to step into Patrick’s world by agreeing with his perceptions, even if they weren’t real, and then gently redirecting the conversation. This approach helped avoid confrontation and reduced his anxiety. For example, when Patrick thought he saw a truck in the backyard, Carla played along, making light of the situation and shifting the focus to something else. “I realized that this was part of his condition and so I tried not to overreact to things,” she says.

In dealing with paranoia, Carla remained calm and supportive. Although Patrick’s suspicion and paranoia worsened over time, she was grateful that he never experienced delusions about her being unfaithful, which can be a common problem for many caregivers. When he had auditory hallucinations, she would engage with the voices, even “kicking them out,” making the situation feel less threatening.

In one of the last scenes, about a year after their husbands have died, Carla and Linda reunite in New Jersey at the Wildwood boardwalk where Linda and Jim met as teenagers working at Morey’s Pier, known for its rollercoasters. They carve their husband’s names into the sand and consider their futures – Carla to focus on self-care for caregivers, and Linda partnering with Curry to co-host the podcast.