Alzheimer’s disease, which affects more than 5 million people in the United States, is the central topic of two films that will be showing at the Breckenridge Festival of Film this month.
Despite this, the films are very different from one another. One, “The Sum Total of Our Memory” is a documentary with interviews of three couples in which one spouse is diagnosed with early-onset Alzheimer’s, and the other, “Usagi-san” is a Japanese-language film, subtitled and acted, about an elderly Japanese man dealing with his wife’s decline into Alzheimer’s. Both films seek to bring awareness to the disease and facilitate discussion.
A new face on an old diagnosis
“The Sum Total of Our Memory” comes from San Francisco-based filmmaker Barbara Klutinis. She has been making films since 1981 and has 12 others on her resume before “Sum Total,” which is the most recent.
The idea for the film came from personal experience. In 2010, her husband was diagnosed with early-onset Alzheimer’s. While the disease more commonly strikes people in their 70s and 80s, the early-onset form can affect people as young as their 40s or 50s.
“I did not know how we were going to get through the ordeal ahead of us,” she wrote in her director’s statement.
The pair decided to attend an early Alzheimer’s support group, which helped. Over the next few years, more and more married couples joined the group, allowing Klutinis to realize how many people were experiencing the same challenges, fears and struggles that she and her husband were.
Although she had seen films about Alzheimer’s before, they had all centered around elderly patients. In her support group, she saw the chance to tell the story of couples experiencing early-onset Alzheimer’s.
“With this film, I wanted to put a face on this disease that has so often been out of the public eye,” Klutinis stated. “… I wanted to bring to light some of the many issues that accompany a diagnosis of Alzheimer’s, both practical and emotional.”
In the film, Klutinis makes a point of highlighting not only the victim’s struggle in dealing with Alzheimer’s, but that of the caretaker as well. Interviews feature both spouses discussing their thoughts and emotions.
Some of it is poignant.
“He has been stripped of just everyday things we take for granted,” says one woman, in the movie trailer, of her husband.
“I forget words, sometimes I won’t know the word. It’s depressing, its’ upsetting, it’s frightening,” says a woman diagnosed with Alzheimer’s.
Instead of dwelling solely on the negative, Klutinis’ film also looks at the positive aspects of how the couples cope, emphasizing how they do their best to make the most of their remaining time together through memories, activities and communication.
“I’ve just decided that I’m not going to let it get me; I’m going to take care of it, I’m going to fight this in any way I can,” says the same woman in the film.
The previous woman finishes her discussion about her husband by saying that while before the diagnosis she would have thought dealing with Alzheimer’s would be the end of the world, now she doesn’t think that anymore. “I think there is life after being diagnosed with Alzheimer’s.”
Cynthia Gordon, vice president of the Breckenridge Festival of Film, said she thought the film presented a good message.
“I thought it was extremely effective and I think that it showed a not-so dismal side of Alzheimer’s.”
Early onset Alzheimer’s disease has touched Gordon’s family as well, in the form of her brother, Bill Graham, who was diagnosed seven years ago, at age 52, and died last fall. Her niece, Graham’s daughter, Andrea Graham Richichi, described the difficult experience of dealing with her father’s illness.
“I remember the day that I found out that my dad had Alzheimer’s like it was yesterday,” she said. She echoed the same issues as those brought up in Klutinis’ film — the struggle with mental deterioration, the emotional toll, the importance of making the most of the time that’s left. She also supports the message of awareness.
“It’s time to wake up and understand this is not just a disease for the old but also for the young and healthy.”
Focusing on the caretaker’s role
Caretaking is a focus of “Usagi-San,” by filmmaker Patrick Dickinson. The film revolves around an elderly Japanese couple living in Los Angeles. The husband, Yoshi, struggles to help his wife, Aiko, as she descends further into mental dementia brought on by Alzheimer’s. The film depicts Yoshi’s plight as caretaker, emphasizing that the person suffering from Alzheimer’s isn’t the only victim.
Summit County resident and professional nature photographer John Fielder played the role of caretaker for his wife, Gigi, for seven years. After she was diagnosed with early-onset Alzheimer’s at age 52, Fielder and his daughters took care of her from home throughout the duration of her disease. Now, Fielder and his family are active with the Rocky Mountain Alzheimer’s Association and in other awareness efforts related to the disease.
“I think people need to continue to be made aware that caregivers — the families and others who take care of Alzheimer’s victims — have a major challenge because it’s a difficult disease to manage and one person often tries to do it by himself or herself, a husband, a wife or another family member, and it’s pretty much impossible. It seals the fate of that person, pretty much destroys any diversity in their life. Physically and mentally, it’s debilitating,” he said.
Fielder has donated a large, framed photograph and two copies of his photography book to be given away in a raffle that will take place after the discussion panel of the two films. He said he hopes films like the two shown at the festival will help raise awareness of Alzheimer’s and the necessity to learn more about it.
“The more we talk about it, the more people are aware of it,” he said. “The more we de-stigmatize it, the more investments will go into research.”