Stories of forgetting
HBO’s for part Alzheimer’s Project explores the disease on a personal and medical level with help from executive producer, Maria Shriver
Alzheimer’s disease doesn’t leap to mind as a subject likely to draw many TV viewers, much less draw them for a four-part series. But it’s tough to turn away from HBO’s exhaustive and bracing look at the illness through the lives of people enduring it and the scientific breakthroughs that could change everything. “The Alzheimer’s Project” marks the third time HBO documentary films has made a focused attempt at public health education. In 2000, it was the Peabody award-winning series “Cancer: Evolution and Revolution,“ followed by the “Addiction“ series in 2007.
About 50 million people accessed the “Addiction“ series via TV, the Internet, and a companion book, series, producer, John Hoffman said, a number that HBO executives consider staggering. So the producers quickly looked for other health issues that might warrant a series that could fill gaps in public health education and help raise money for scientific research.
“The question was, where is there need?“ recalled Hoffman, who helped produce all three series. “Where is there hope in the public health area, but where is there a lack of knowledge? And it kept coming up that Alzheimer’s was the area where great advances were being made, and at the same time we had a tremendous amount of fear and anxiety.“
“The Alzheimer’s Project“ debuts tonight with the film “The Memory Loss Tapes,“ which features seven patients in various stages of the disease, Joe Potocny, a 63-year-old computer genius, blogs through the onset of Alzheimer’s disease, noting wryly that he helped invent DVDs and now gets lost in his own front yard. Yolanda, Santomartino, 75, lives in a nursing home and befriends her own reflection, believing it to be a new resident named Ruth.
HBO Filmmaker‘s gained access to the world’s top, Alzheimer’s researchers and to families during some of the most vulnerable periods of their lives, capturing the death of 77-year-old Cliff Holman, a retired Alabama TV host
“I thought of it as short stories about forgetting,“ said HBO documentary Films President, Sheila Nevins, executive producer of the series. “To me that show was really a lesson in caring if nothing else and oddly not as depressing as everyone expected it to be. The love of some of these people is quite extraordinary.“
Nevins also involved First Lady of California, Maria Shriver, as executive producer. Shriver’s 93 year old father, Sergeant Shriver, the first director of the Peace Corps and 1972 Democratic vice presidential nominee, was diagnosed with Alzheimer’s in 2003.
More than 5 million Americans have Alzheimer’s disease. That figure accounts for one in every eight people over age 65, according to the Alzheimer’s Assn. And those numbers are expected to balloon as the baby boomers reach retirement age.
“It’s the second most feared illness after cancer,“ said Hoffman, echoing a line repeated in the series.
The project’s producers quickly discovered why. As each film in the “Alzheimer’s Project“ demonstrates, Alzheimer’s dissolves the very traits that distinguishe us from one another. It steals the personality, shaving off memories, so gradually at first, like the name of one spouse, or the meaning of a stop sign, while preserving enough intellect to give the patient a profound sense of his or her loss.
“I wake up some mornings and don’t know whether I’ve been asleep at all,“ Alzheimer’s patient June, Vasse, 63, says in “Momentum in Science.“
Larger and larger swaths of the memory disappear overtime, often leaving odd bits and pieces, like song lyrics, or fondness for a long dead pet. Eventually, an Alzheimer’s patient exists in the world much like a toddler, who must be hand-fed, diapered, dressed, and vigilantly monitored.
“I think of it as the long goodbye,” said one Alzheimer’s caregiver in the “Caregivers” segment.
Finding the right individuals for these films was a months-long process. Filmmakers considered hundreds of cases and spent weeks interviewing families by phone before showing up with their cameras. “The Memory Loss Tapes“ directors, Shari Cookson and Nick Doob found two of their subjects, Potocny, me and Josephine Mickow, through blogs (Potocny’s http://living-with-alzheimers.blogspot and Mickow’s daughter Annie Michow’s http://maplecorners.blogspot.com.
Once the filmmakers were in position, the disease itself posed special challenges of shooting. Though they were often lost in their own reveries, the late-stage Alzheimer’s patients weren’t oblivious to the camera. It sometimes took hours of waiting, said Cookson, before a patient was comfortable enough to ignore them.
“It was hard because we couldn’t explain who we are to them,“ Cookson said. “We could just be as open and kind as we could be … What was amazing to me was to see what remained of people. When you see those bits of who that person was, shining through it, all, it’s kind of breathtaking in a way.“
In “Grandpa Do You Know Who I Am?,” which debuts Monday, a bubbly, eight-year-old girl tries to engage her disoriented grandmother. Eventually, her grandmother grows angry and orders the sobbing girl out of her room.
Later, her older sister assures the girl she did nothing wrong. In the “Caregivers,“ debuting, Tuesday, a grown son, out for a walk with his 82-year-old father with Alzheimer’s, has to stop to pull up his fathers pants that have fallen to his ankles. And another thing yet, a woman who had divorced her husband, welcomed him back into her life and became his primary caregiver when he was diagnosed, at 54, with early- onset Alzheimer’s. And in “Momentum of Science,” a two-part film airing, Monday and Tuesday, five of six siblings in the DeMoe family learned they have a genetic mutation that causes early-onset Alzheimer’s, and though science has no cure for them, they commit to an ongoing study in the hope the findings will help future generations
But ‘The Alzheimer’s Project” represents a greater commitment than a few stirring documentaries. It’s co-presented by the National Institute on Aging at the National Institutes of Health, a partnership that guaranteed producers would have access to the most cutting-edge research and the scientists over seeing it.
In “Momentum of Science,” scientists note that there have been more dramatic advancements in understanding the disease in the last two decades than took place in the preceding 80 years. In the last five years, scientists gained the ability to diagnose early-onset Alzheimer’s using brain imaging.
Other new research suggests that the disease may be delayed or even prevented by exercise, maintaining healthy blood pressure, broad social networks and intellectual stimulation into old age. There’s even an Alzheimer’s vaccine in the final stages of clinical trials.
“We are on the brink of controlling one of the major diseases affecting world health,“ says Richard J. Hodes, director of the National Institute on Aging, in the film.
HBO sees the series as a sort of privately funded public health campaign. To reach the estimated 150 million Americans, whose lives are touched by Alzheimer’s, HBO is distributing the series in unprecedented ways.
Viewers can stream or download the series for free – as audio or video – from HBO.com. The cable network is also distributing 5,000 screening kids to nonprofits nationwide. The NIH will make screenings of the series available to its members.
“Alzheimer’s could cripple the United States if someone doesn’t figure out how to deal with it,“ said Nevins. Producing the HBO series, she had it, gave her hope.
“ It was invigorating to know there could be something on the horizon to, if not prevent, at least extend the length of time from diagnosis to incapacitation.“
The Los Angeles Times
10 May 2009, Sun · Page 17 and 33 (D Section)
Dictated Transcription: S Cookson