‘Stories about forgetting’


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, there was the Peabody Award-winning series “Cancer: Evolution to 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 considered staggering. So 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 a 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 filmmakers gained access to the world’s top Alzheimer’s researchers and to families during some of the most vulnerable periods of their lives, even capturing the death of 77-year-old Cliff Holman, a retired Alabama TV show 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, Sargent 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 distinguish us from one another. It steals the personality, shaving off memories so gradually at first, like the name of one’s 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 memory disappear over time, 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 hun- dreds of cases and spent weeks interviewing families by phone be- fore showing up with their cameras. “The Memory Loss Tapes” directors Shari Cookson and Nick Doob found two of their subjects, Potocny and Josephine Mickow, through blogs (Potocny’s https://living-with-alzhiemers and Mickow’s daughter Annie Mickow’s https://maplecorners

Once filmmakers were in position, the disease itself posed special challenges to 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 8-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 “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 father’s pants that have fallen to his ankles. In another vignette, 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 in Science,” a two-part film airing Monday and Tuesday, five of six siblings in the DeMoe family learn 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 that 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 overseeing it.

In “Momentum in 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 The cable network is also distributing 5,000 screening kits 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 added, 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.”