When Barbara Klutinis and her husband joined an Alzheimer’s support group for couples, she heard stories that she thought others should hear, too.
So Klutinis — who had taught movies and made only short experimental films after switching careers from a flight attendant — used her pension funds to produce her first full-length documentary. The movie — “The Sum Total of Our Memory: Facing Alzheimer’s Together” — will be screened Friday afternoon at the NOVA International Film Festival in Fairfax County.
“When my husband was diagnosed with Alzheimer’s, I just kind of went into a panic and started really feeling alone and just like, ‘How are we going to get through this?’ ” Klutinis, 72, said. “I started making a film about ‘If the disease could speak, what would it say?’ ”
Klutinis’s movie comes as Alzheimer’s becomes more prevalent in an aging society and depictions of its impact are appearing more frequently in popular culture. An estimated 5.3 million Americans are living with the disease, according to the Alzheimer’s Association’s most recent annual report. The report says the number of new cases diagnosed each year will rise from about 454,000 in 2010 to an estimated 615,000 by 2030.
Earlier this year, Julianne Moore won best actress awards at the Golden Globes and Academy Awards for her performance in “Still Alice,” which tells the story of a 50-year-old linguistics professor who has early-onset Alzheimer’s. In “Glen Campbell: I’ll Be Me,” filmmaker James Keach went on the road with the legendary country music guitarist and singer following Campbell’s diagnosis of Alzheimer’s and showed with bracing candor how the disease has changed the performer’s life. A song in the film received an Oscar nomination this year.
A recent “House of Cards” episode includes the plot line of a Supreme Court justice who is secretly diagnosed with Alzheimer’s disease; Frank Underwood — actor Kevin Spacey’s wickedly scheming character — threatens to expose him unless he resigns. Before that, the disease also showed up in episodes of “Mad Men,” “The Sopranos,” “Grey’s Anatomy” and other television shows.
It was has also been the topic of several books. Meryl Comer, a former journalist, wrote “Slow Dancing With a Stranger” about the course of dementia in her husband, a noted National Institutes of Health researcher.
“It is definitely bleeding much more significantly into the media,” said George Vradenburg, a founder of the D.C.-based nonprofit US Against Alzheimer’s. “It used to be the case that you hid out, you wanted to sort of stay private, you didn’t want to talk about your disease. But now more and more people are willing to talk about their disease. And more and more people are telling stories of others, fictional and real, of people experiencing this disease. So we’re beginning to see a crack in the stigma as people begin to talk about this disease.”
Klutinis’s husband, Jerome Steiner, 74, was diagnosed with Alzheimer’s about six years ago, she said. His serious troubles with memory became apparent when Steiner, a former lawyer with the Federal Trade Commission’s San Francisco office, asked her where one of his rings came from.
“I said, ‘Jerry, you’ve been wearing a wedding ring for 32 years,’ ” recalled Klutinis, a retired film studies teacher who still lives in California. She said his diagnosis almost seemed to hit her harder than him.
“I just could see our whole life crashing around us. The feeling that hit me the most was the isolation. I just felt like, ‘Where do we start? How do we navigate?’ ” Klutinis said. “Part of my interest to make this film is I didn’t want other people to feel like that.”
To help cope, Klutinis wanted her husband to join a support group. He did not. His skepticism faded, however, after finding a former high school classmate there.
What she heard was illuminating, and Klutinis decided to capture on film the kind of unvarnished and candid discussion that emerged in private, sometimes with a poetry of its own. Her film, she said, is intended to show people that there is a way to get through this, that one does not have to feel alone.
“I just thought this too good for somebody not to hear it,” she said.
Klutinis’s movie delves into the experiences of three couples, offering a glimpse of the emotional toll that dementia takes on the people diagnosed with the disease and their spouses.
Their interviews touch on a range of issues, from the wrenching experience of slowly losing a loved one to savoring the moments that are left. They talk about the daily struggles of living with someone whose memories are evaporating and whose ability to do simple tasks is eroding. They discuss issues as commonplace as losing things — “I love this man, but he is driving me crazy,” Christine Paterson says — and as intimate as sex. One talks about how disorienting it is to peer into a photo album with the person who had helped build the life depicted in its images — and being the only one who remembers any of it.
In their stories Klutinis saw reflections of her own: the feeling of friends growing distant, as if dementia were contagious; the sense that no one affected by the disease is really sure how to handle its impact until they have to; and that time can vanish as rapidly as memory.
Joel Panzer, whose wife, Janet, was diagnosed with dementia, tells their sons to spend as much time as they can with her now, not later.
“There is no tomorrow,” he says. “It’s going away. Mom’s going away, little by little. That’s the reality.”
She has since died.
“The Sum Total of Our Memory: Facing Alzheimer’s Together” will be shown at 1 p.m. Friday at the Angelika Film Center in Fairfax.