What image comes to mind when you think of Alzheimer’s disease? Probably it is not one of the feverish portraits painted by Willem de Kooning, even though the artist himself, in all likelihood, was afflicted by the disease in his later years. Perhaps for this reason it is fitting that the home of many of de Kooning's famous abstractions, the Museum of Modern Art, hosted Thursday night's event, Living With Alzheimer’s, a screening of short films that bear witness to patients diagnosed with the disease.
“The point of my film was that there could be life after a diagnosis of Alzheimer’s,” Naomi Boak, an Emmy Award-winning producer and independent filmmaker, told Medical Daily. Her short, “Let the Band Play On,” highlighted families as they continued to experience intimacy and delight despite the ravages of the disease. None too quickly she learned of the possibility of emotional closeness in the wake of her father’s diagnosis. Initially, his condition was devastating to her but “more and more joy and moments of joy came into [my father’s] life as time passed,” she recalled. By remaining in the moment, by accepting the new terms of her father’s life — instead of insisting he meet her own standards of quality — she found a way to continue their intimacy... and their happiness. “Where there is joy, there is still life,” she stated simply.
Experts suggest that as many as 5.1 million people in the U.S. currently suffer from this brain disease, which slowly destroys memory and thinking skills, while ultimately eroding a person’s ability to perform even simple tasks. More prevalent among African-Americans than European-Americans, estimates range from 14 percent to almost 100 percent higher incidence, comparatively. Because his mother was diagnosed with the disease, the topic of Alzheimer’s resonated deeply with Roger Ross Williams, who won the 2010 Academy Award in documentary short subject with his film “Music by Prudence.” Williams said he wanted to make a film that was in some way connected to his heritage and so his short, “De ‘mem’ bunce (The Remembrance)”, focuses on the Gullah, a group of African-Americans who are descendants of the slaves of South Carolina and Georgia.
His short film features a mother with Alzheimer’s and her caregiver son as they take part in activities with Memory Matters, a non-profit organization committed to helping families living with a diagnosis of Alzheimer's. His difficulty in making a movie about Alzheimer’s centered around the fact that this community felt a great deal of shame. “The son didn’t want to go to the group sessions,” Williams said in a Q&A session after the screening. “So I wanted to capture that hesitation and capture, after [the mother and son] went to the center and got help, how that changed the relationship between them.” As Williams’ film makes clear, there is greater reticence in the African-American community, and many who might benefit do not seek the help they need. (Similarly, Hispanics are said to be about 1.5 times more likely to develop Alzheimer’s disease than whites, and they, too, are underrepresented when it comes to accepting help.)
Symptoms of the disease, which usually begin after age 60, worsen over time — a sad fact featured in the short film by Megan Mylan, whose documentary films have received Academy Award and Emmy Award nominations. Discussing “My Little Friends,” Mylan spoke of her admiration for the wife of a patient with Alzheimer's. “She was so straight-faced,” she said, paraphrasing the woman’s attitude as “I know this isn’t going anywhere positive but we are going to eke out every bit of quality and genuine experience from a still vibrant life.”
David Hyde Pierce, actor, Alzheimer's advocate, and the event’s host, observed, “That’s the story of all of our lives. It doesn’t end well.” Laughter followed this comic remark to which he added, “To be reminded of that, and learn that lesson in these very extreme circumstances is a great gift.” Pierce emphasized the fact that at one time, cancer was the unmentionable disease and now Alzheimer’s fills that role. These days it's Alzheimer's no one wants to talk about or admit to having, he said, but in the case of cancer, “the beginning of the conversation was the beginning of finding treatment.”
“Once you know… once you realize what an urgent, urgent problem this is, you now are an ambassador to go out there and help us,” added David Shenk, creator and executive producer of the Living with Alzheimers Film Project. “Every new person we draw into this discussion means we’re getting that much closer to a full, national conversation about this disease,” which he said is one of the major killers in the U.S. and “the only major killer that’s on the rise.”
Currently, there is no cure and also “no effective treatment for Alzheimer’s, even to slow it down by one day, despite what you may have heard,” Shenk said. “We’re not spending nearly enough on Alzheimer’s research. … It’s a paltry $500 million [a year] compared to billions and billions of dollars spent on other diseases.” He urged those in the audience to raise awareness of Alzheimer’s so that treatments might soon become available to the millions suffering today ... and to the millions more who will suffer the same tomorrow.