This May, HBO launches The Alzheimer's Project, an ambitious, multi-platform effort to bring a wider understanding of Alzheimer's disease to the American public. The project consists of a four-part documentary series, 15 short supplemental films, a robust website (www.hbo.com/alzheimers) , a companion book and a nationwide, community-based information and outreach campaign.
The Alzheimer's Project is a follow-up to HBO's Emmy Award-winning The Addiction Project (2007). Much of the Addiction team is back for this latest collaboration with the National Institutes of Health (NIH), including executive producer Sheila Nevins and series producer John Hoffman. Maria Shriver joins as an executive producer.
Hoffman says that when the Addiction series was done, "We at HBO were so pleased that it had served a purpose for the community that's involved with addiction, and that we had established such a great rapport with the NIH. To have them as a collaborator is such an unusual occurrence, and we felt we should we explore this relationship a little bit further and look at another public health issue that we could play a role in."
HBO and the National Institute on Aging (a division of NIH) landed on the topic of Alzheimer's because it affects such a large number of people, including a considerable group beyond those who are afflicted with the disease. It is estimated that family and friends act as caretakers for 70 percent of those who have Alzheimer's. The disease is the second most feared illness after cancer, and may currently affect as many as five million Americans. That number will only increase as the baby-boomer generation ages.
The same survey that revealed people's deep fears of Alzheimer's also showed that many are unaware of the advances going on in science indicating that there may be things that we can do to help our brains age in a more healthy way and possibly mitigate the chances of developing the disease. "I had no knowledge of this enormous amount of information that's emerging about the connection between cardiovascular health and brain health," Hoffman notes. "Hope is the most important word that's part of this project."
The quartet of documentaries in the series uses a variety of approaches to illuminate the different aspects of the disease. The Memory Loss Tapes, directed by Shari Cookson and Nick Doob, is an intimate, 90-minute vérité documentary about seven patients, each in an advancing stage of dementia. Momentum in Science is two-part, state-of-the-science report that takes viewers inside the laboratories and clinics of 25 leading scientists and physicians. Bill Couturié crafts five family portraits that illustrate caring for different stages of Alzheimer's disease in Caregivers. Grandpa, Do You Know Who I Am? with Maria Shriver is aimed at helping children and young adults understand Alzheimer's. The film is inspired by Shriver's book, What's Happening to Grandpa?, and her own experience with her father, Sargent Shriver, who suffers from the disease.
"In a sense, Memory Loss Tapes and Grandpa, Do You Know Who I Am? are there to lay out the problem," Hoffman points out. "Momentum in Science and Caregivers in many ways offer solutions. So problem and solution is really what we were very clear that we were setting out to present."
In The Memory Loss Tapes, we meet each subject just once for a brief episode, and each segment presents a patient who demonstrates a further progression of the illness. The separate pieces build on one another in such a way that by the time we get to the seventh and final patient, we feel as though we have been through the entire spectrum of the disease with him.
"In the beginning, Sheila said she wanted a film about what it is to lose your mind," says Doob. "That was our operating principle-that sort of losing who you are, your sense of yourself."
In the earlier part of the film, those who have less advanced stages of the disease are able tell their own stories. Fannie Davis mourns her loss of independence when her driver's license is taken away because she can't remember certain aspects of how to drive. Joe Potocny, who was diagnosed two years ago, keeps a "Living with Alzheimer's" blog. Eventually, the point of view within each episode shifts to that of the caregiver because those who have the disease either aren't aware of it or can no longer express themselves.
Cookson and Doob spent a lot of time on the phone with their subjects and their families before shooting, and shot the film with a small HD camera and miniscule crew. The idea was to just blend in and be a part of the moments as they happened. This results in access to extraordinary moments, such as when 78-year-old Woody Geist reunites with the Grunions, his a capella singing group. Despite suffering from Alzheimer's for 14 years and often not recognizing his own family members, he still remembers the Grunion's song lyrics as he sings along with them.
"I was touched and moved not only by what had left people, but what remained," remarks Cookson. "There's some sort of essence of a person that holds on. I was really inspired by how these families coped with it-just being in the present with them, finding a way to still have a relationship with their loved one."
People often forget that when families are dealing with Alzheimer's, there may be children who are struggling to understand what is happening to a grandparent or older relative. Grandpa, Do You Know Who I Am?, directed by Eamon Harrington and John Watkin, uses vignettes and interviews with kids to help them deal with issues such as fear of the disease, preserving memories and coping with patient's mood swings and unexpected behavior.
Hoffman credits Nevins with the idea to make a piece for the series focused on children. "When we do these public health campaigns, we really try to address the needs of different audiences," says Hoffman. "It was a very inspired idea to think we should speak to children; it's not the obvious thing to do."
For those who are interested in understanding more about the pathology of Alzheimer's and current advances in research, Momentum in Science delivers a comprehensive look at the genetics, neuroscience, prevention and treatment of the disease. By the time you're done watching, you'll be an expert on everything from beta-amyloid to the latest developments in brain imaging...or at least understand enough to know why they are important.
Producers Hoffman and Susan Froemke prepared extensively for their interview sessions with the scientists and physicians by deliberately crafting questions that would garner responses with varying levels of sophistication. That way they'd have choices in the edit room that would allow them to strike just the right balance between general explanation and technical jargon.
"That was our need if this was going to be successful-not to lose you the viewer," explains Hoffman. "To pare the material down and make sure that we are not challenging you in a way that is just too tiring, too taxing, and that we are not requiring so much concentration that we lose you and you say, ‘This is more scientific than I was interested in. I'm not connecting with it; it doesn't feel like it relates to me.'"
Froemke and Hoffman were on the road for six months and shot 500 hours of material. Winnowing down the footage to two hours was a huge challenge. They eventually organized the film into chapters, at Nevins' suggestion. Hoffman says Nevins has an astounding editorial mind, and it was very helpful to have someone look at the project with fresh eyes during the process of putting it together.
After spending this much time on the project, Hoffman's friends joke that he's ready to get his medical license, but the producer has more than just a professional interest in the subject matter. His father passed away ten years ago after a protracted fight with Alzheimer's, and Hoffman had a deep-set fear of developing the disease himself. After immersing himself in the latest research during the course of making The Alzheimer's Project, he is much more hopeful.
"What surprised me was that because my father had it, it's not a given that that is my fate," Hoffman says. "I had a much bleaker view of the genetics of Alzheimer's than research has proven. Frankly, with all this new information, I was amazed to find myself swimming in a calming pool of scientific discovery and optimism. I hope that other people will have that same experience."
In addition to its May 10th premiere on HBO, The Alzheimer's Project will stream all four films for the general public on May 8 at www.hbo.com/alzheimers.
Tamara Krinsky is associate editor of Documentary.