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HBO Documents Life with Alzheimer Disease — And 25 Research Advances

STUMP, ELIZABETH

doi: 10.1097/01.NT.0000354537.04872.bb
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Neurologists are well aware of both the destructive nature and the widespread prevalence and burden of Alzheimer disease (AD) — according to 2009 data released by the Alzheimer's Association, one out of eight people age 65 or older has AD; an estimated 500,000 Americans under age 65 have AD or some other form of dementia; and 70 percent of people with AD live at home, cared for by friends and family. In addition, by 2050, the number of Americans living with AD is expected to triple, growing to as many as 16 million.

But whether the public at large is prepared to handle these facts as our society ages and AD continues to remain a threat is another matter. And that's where the new HBO documentary series, “The Alzheimer's Project,” steps in.

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The four-part documentary series debuted on Sunday, May 10, with the first segment, “The Memory Loss Tapes,” which shares the stories and perspectives of seven individuals with AD as dementia progresses. The three other shows include “Grandpa, Do You Know Who I Am? with Maria Shriver,” in which the author and California First Lady teaches children to understand and deal with a grandparent's AD; “Caregivers,” which spotlights the struggles and successes of five caregivers for family members in different stages of the disease; and the two-part “Momentum in Science,” a report on cutting-edge research advances in understanding, treating, and preventing AD.

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Neurology Today talked to series producer John Hoffman about the creative work and medical input that went on behind the scenes of “The Alzheimer's Project.” Hoffman, who was behind HBO's award-winning “Addiction” documentary, said his father's struggle with AD partially inspired him to originate the documentary concept.

“After Susan Froemke and I produced ‘The Addiction Project’ with [executive producer] Sheila Nevins, we asked what would be the next health issue we would address with such a multi-platform effort,” he said, adding that the producers were shocked by the magnitude that AD poses as a public issue and the amount of anxiety it generates in the general public.

There is a huge gap between research advances and what the public knows, he said. “We realized so much was being learned in combination with advances in possible treatments to slow down and prevent disease. The public was unaware that science was making breakthroughs, and we thought this was a great opportunity to help fill the gap between the fear the public has and the optimism the scientific community is starting to feel about the disease.”

“In addition,” he continued, “there's a growing understanding that AD is a disease of the entire body — whether it be the cardiovascular system, the inflammatory system, the role glucose plays — all of these somehow relate to its pathology. There's mounting evidence that if you can control glucose and blood pressure in midlife you can affect the way your brain changes as you grow older. We saw a tremendous role for a public health campaign to address these issues.”

Hoffman quickly became educated about the disease while researching the documentary concept. “Before this, I hadn't allowed myself to focus on Alzheimer disease because I had a defeatist attitude about it,” Hoffman said, “and I didn't believe there was hope. I'd have an ‘ignorance is bliss attitude.’ It was a great lesson that knowledge equals power.”

HBO executive producer Shelia Nevins' long friendship with Maria Shriver and knowledge of her children's book about AD, What's Happening to Grandpa?, led to getting Shriver on board as an executive producer of the project and the host of the documentary program “Grandpa, Do You Know Who I Am? with Maria Shriver.” In this short film, Shriver, whose father has AD, offered kids and teens five lessons for coping with grandparents who have the disease.

As for the patients with AD that viewers meet in the segments, Hoffman said the producers were introduced to the patients by doctors on the staff of the AD centers where they filmed. All are (and were at the time of filming) being treated by specialists, primarily neurologists. “Thanks in large part goes to the courage and generosity of these people and their families, who were able to open their lives to us to help demystify the disease,” he said.

The “Momentum in Science” segment, which took two years to make, explores the interiors of clinics and laboratories of 25 physicians and scientists in order to highlight research advances (brain imaging, pharmaceutical treatments) and the progress made over the past few years in understanding the interaction of multiple factors that contribute to AD. The documentary producers spoke to 200 of the leading AD researchers in disease care, treatment, and research, said Hoffman. (See “A Who's Who in AD Expertise.”)

“We consulted with all of these scientists, but none were hired as consultants — it was all part of our education,” he said. The producers also consulted with staff in the division of neuroscience at the National Institute on Aging, who vetted all the content and offered guidance on the major discoveries (or current investigations) to feature.

If there is any misconception they want to address in the documentary, it is to rectify the false belief that there is no hope for AD. “That's just not true,” he said. “We are excited to bring hope to the 54 percent of Americans that have been touched by Alzheimer disease. There is tremendous public anxiety that there is nothing we can do, and if you have someone in your family who is affected by Alzheimer disease, that you are at great risk, but genetics does not show that. We feel good about bringing that kind of information to the public.”

“Neurologists will appreciate how we've elevated the importance of science in society,” Hoffman said. “We are trying to capture what many of the scientists feel is a golden era of neuroscience. The brain equaling a black box is hopefully going to be a thing of the past. The field of neurology is exploding with findings, and we're very happy to depict that and to portray scientific endeavors as exciting and worthy pursuits for young people.”

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Who's Who in AD Expertise

Advances by 25 Alzheimer disease experts comprise the final two-part segment, “Momentum in Science”:

  • Paul Aisen, MD, professor of neurosciences, University of California-San Diego (AD drug development)
  • Randy Bateman, MD, assistant professor of neurology, Washington University (beta-amyloid metabolism, pathophysiology of AD)
  • Thomas Beach, MD, Director of Civin Laboratory for Neuropathology Banner Sun Health Research Institute (pathology of AD, cholesterol and AD)
  • David Bennett, MD, director of Rush Alzheimer's Disease Center (cognitive reserve in AD)
  • Carl Cotman, PhD, professor of neurology at University of California- Irvine (healthy aging, role of exercise and diet in AD)
  • Suzanne Craft, PhD, professor of psychiatry and behavioral sciences at University of Washington VA Puget Sound (impact of insulin resistance on AD)
  • Charles DeCarli, MD, professor of neurology at University of California-Davis (vascular health and AD)
  • Steven DeKosky, MD, vice president, dean, and James Carroll Flippin professor of medical science at University of Virginia (clinical practice in AD) Dora Games, PhD, researcher at Elan Pharmaceuticals (vaccine approach to AD drug development)
  • Richard Hodes, MD, director of the National Institute on Aging(demographics and costs of AD)
  • William Klunk, MD, professor of psychiatry and neurology at University of Pittsburgh (co-inventor of the AD neuroimaging compound PiB)
  • Virginia Lee, PhD, John. H. Ware 3rd Professor in AD Research at University of Pennsylvania (tau tangles in AD)
  • Chester Mathis, PhD, professor of radiology, pharmacology, and pharmaceutical sciences at University of Pittsburgh (co-inventor of the AD neuroimaging compound PiB)
  • John Morris, MD, director of the AD Research Center at Washington University (diagnosis of AD)
  • Lennart Mucke, MD, professor of neuroscience at University of California, San Francisco (tau and neuronal overexcitation in AD)
  • Joseph Rogers, PhD, founder of Sun Health Research Institute (interaction of inflammation and AD)
  • Gerard Schellenberg, PhD, director of AD Genetics Consortium at University of Pennsylvania (genetics of AD)
  • Dale Schenk, PhD, executive vice president and chief scientific officer of Elan Pharmaceuticals (vaccine approach to AD drug development)
  • Julie Schneider, MD, assistant professor of neurology and neuropathology at Rush University (neuropathology and AD research)
  • Dennis Selkoe, MD, co-director of center for neurologic diseases at Harvard (beta-amyloid and protein biology of AD)
  • Scott Small, MD, Herbert Irving Associate Professor in Neurology at Columbia University (hippocampal dysfunction and memory loss, exercise in maintaining cognition)
  • Sudha Seshadri, MD, associate professor at Boston University (cardiovascular health and AD)
  • Reisa Sperling, MD, associate professor in neurology at Harvard (neuroimaging in AD research, memory formation and retrieval)
  • John Trojanowski, MD, co-director of Center for Neurodegenerative Disease Research at University of Pennsylvania (tau tangles in AD)
  • Philip Wolf, MD, principal investigator of Framingham Heart Study at Boston University (cardiovascular health and AD)

“The Alzheimer's Project,” presented by HBO Documentary Films and the NIH National Institute on Aging in association with the Alzheimer's Association, Fidelity Charitable Gift Fund, and Geoffrey Beene Gives Back Alzheimer's Initiative, is part of HBO's public service outreach campaign that also includes 15 short supplemental films on scientific advances, a companion book by Public Affairs Books, and a Web site (www.hbo.com/events/alzheimers/). All films will stream free of charge on HBO.com, and will be available on DVD starting June 2. The “Alzheimer's Project” DVD is now available for purchase at the HBO Store online: http://bitly.com/n6wf5.

©2009 American Academy of Neurology