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HBO Puts Alzheimer’s Under the Microscope
By
Elizabeth Jensen, The New-York Times
May
1, 2009
Genevieve Garry and James E. Kutzner in one of HBO’s documentaries on Alzheimer’s disease.
HBO, the pay-cable home to blood-sucking 173-year-olds, polygamous Mormons and stressed-out, therapy-seeking C.E.O.’s, is not the usual place for explanations of amyloid plaques, computer-rendered brain-imaging scans or distressing tales of a woman told she can never drive again. But as it does every few years, HBO will soon intrude on its largely fiction-oriented lineup of series and second-run Hollywood movies to deliver five prime hours of a multimillion-dollar public service health campaign. Starting May 10, in its most far-reaching initiative yet, HBO tackles Alzheimer’s disease.
Maria Shriver, an executive producer of the series, with Carl Cotman, director of the Institute for Brain Aging and Dementia.
As with the previous “Addiction” and “Cancer: Evolution to Revolution,” “The Alzheimer’s Project” is a curious hybrid of science and emotional stories about patients, their families and caretakers. It started, as many HBO documentary projects do, with a personal fascination of Sheila Nevins, HBO’s president of documentary. “We were all getting older,” Ms. Nevins said. “The whole idea of what was real-forgetting, aging-forgetting and Alzheimer’s-forgetting was obsessing me.”
Like many of Ms. Nevins’s other obsessions, the initiative will get a lot of attention. HBO is opening the program to all cable subscribers, helping with grass-roots screenings of the four prime-time films and flooding digital outlets (like Facebook and YouTube) with content. From video that didn’t make the cut, HBO has made 15 short films for digital outlets and another 18 for Alzforum.org, a site for researchers. There will be a companion book, “The Alzheimer’s Project: Momentum in Science,” published by Public Affairs in May.
Aside from the personal interests of Ms. Nevins, HBO executives seeking out projects look for diseases that affect a broad swath of people and instances in which medical progress has been underreported. Alzheimer’s “kept coming up as having been this recent surge of advances,” said John Hoffman, the series producer. He added, “There seems to be some hope in an area where previously there had been little or none.”
It is estimated that as many as five million Americans suffer from Alzheimer’s, a relatively small number compared with the 23 million who were estimated in 2007 to be fighting addiction. And there are other afflictions that affect more people. But as a public health concern, Alzheimer’s — the seventh-leading cause of death in 2006, according to the National Center for Health Statistics — is a growing worry because of its already high cost of care and the likelihood that the numbers of those with the disease will grow markedly as the population ages. With cancer and heart disease, “there is a greater understanding that there is a problem,” said Richard J. Hodes, director of the National Institute on Aging (part of the National Institutes of Health), which is presenting the series with HBO. By contrast, just a couple of decades ago, he said, Alzheimer’s wasn’t even recognized as a distinct disease, and had a stigma.
Despite President Ronald Reagan’s openness in discussing his Alzheimer’s diagnosis, for many the disease is one of “fear, guilt, shame and confusion,” said Maria Shriver, whose father, Robert Sargent Shriver, the founding director of the Peace Corps, received a diagnosis of the disease in 2003. Ms. Shriver, an executive producer of the HBO series, said there is guilt and shame in dealing with caregiving, coupled with a “fear that I am looking into my own future.” The goal of the project, she added, “is to give people realistic hope.”
That goal initially made National Institute on Aging officials wary when HBO asked it to collaborate, Dr. Hodes said. “We were unsure what the focus was likely to be,” he said, noting the need to provide a balance between hope and scientific advances without raising “the promise of false expectations.” But ultimately, the institute signed on as a full co-presenter, the first time it has consented to such deep involvement in a project. The institute’s role was to ensure that all the science content was accurate; HBO retained editorial control.
Dr. Hodes said the two worked extensively “to understand and respect one another’s position,” but the tricky balance in outlook — hope or despair? — is evident in separate forewords to the companion book. Dr. Hodes writes that “research has yet to achieve success, as defined by the ability to prevent Alzheimer’s disease, or, if it develops, to slow its progression.” Mr. Hoffman writes that through producing the program, “I lost my fear of developing the disease” that killed his father. His optimism, he writes, stems from learning that late-onset Alzheimer’s “is not completely determined by inheritance” and that lifestyle choices may make a difference.
Unlike in “Addiction,” the science and the emotional issues around Alzheimer’s are dealt with in separate films, which Ms. Nevins said was done for creative reasons. But the effect is to send viewers on an emotional roller coaster as they confront the anguish of a current diagnosis and the potential better news for future generations.
Nearly 25 million viewers watched “Addiction” on HBO TV channels alone in 2007. But if “Addiction” is an indication, the impact of “The Alzheimer’s Project” will reach far beyond the personal. Patricia Taylor, executive director of Faces and Voices of Recovery, credits “Addiction” with playing an important role in her group’s lobbying for the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act, passed last year to end insurance discrimination against people with mental illness. “The HBO addiction show was really instrumental in laying the groundwork, obviously with other activities, to educate the public,” she said.
Robert Meyers, professor emeritus at the University of New Mexico, where the Center on Alcoholism, Substance Abuse and Addictions is based, said that HBO’s spotlight on his protocol for getting addicts to go to treatment led to numerous training requests from other researchers. “Some people learned the new system because of HBO,” he said.
In July the Army Center for Substance Abuse Programs plans to distribute DVDs of “Addiction,” as well as training curriculums, for use at Army installations worldwide, Hank Minitrez, an Army spokesman, wrote in an e-mail message.
Dr. Hodes said he hopes “The Alzheimer’s Project” “will allow people to make a better judgment of how they think research ought to be supported,” whether through government financing (although the National Institutes of Health doesn’t lobby) or by participating in clinical research as a human subject.
Ms. Shriver, California’s first lady and a former NBC News correspondent, already took the program to Capitol Hill in March when she testified before the Senate Committee on Aging. Her office in Sacramento told her that it “generated the most mail feedback of anything I had done in the last five years,” she said.
For Ms. Shriver, the program has had professional repercussions. After pitching Ms. Nevins projects for years and getting rejected, this proved to be the right moment for the two to work together. She said she’s happy that the series has a solid focus on caregivers, her personal interest.
Ms. Shriver appears in the second film, an adaptation of her 2004 children’s book, “What’s Happening to Grandpa?” Children ask questions and speak directly about their sadness; tears well up in the eyes of 11-year-old Ashanti when her grandmother snaps at her to “go home.” “It’s emotional television,” Ms. Shriver admits, but she said that only one other time have her own four children watched something she did and, craving more, said, “That’s it?”
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