No yellow brick road here, just a little broken concrete.
–Joe Potocny, Living with Alzheimer’s, 18 February 2008
She’s here physically, but that’s not the mother that I have known the majority of my life.
— Deborah Dancy, Momentum In Science
Bessie Knapmiller lives Birchwood, Wisconsin, in the house where her husband was born. At 87, she’s lively and funny, tending to her garden and singing with a local group called the Happy Notes. Two months before she first appears in The Memory Loss Tapes, the first segment of HBO’s The Alzheimer’s Project, she was diagnosed with Alzheimer’s disease. She feels it, but imprecisely. “It’s hard to explain it just how it acts,” Bessie says. “I can know people by looking at ’em, but now it’s getting so I’m not doing too good a job at that either.” She smiles, faintly. Her fading memory worries her. When Bessie’s daughter asks whether she thinks her medication is helping, she answers, “It’s gonna come no matter what I take. There’s no cure for it.”
This doesn’t mean that Bessie is “giving up,” she asserts. But it does mean her family is one of the estimated 5.3 million now grappling with Alzheimer’s in the United States alone. This number is increasing as you read: according to the Alzheimer’s Association, someone develops the disease every 70 seconds, and the direct and indirect costs of Alzheimer’s and other dementias to Medicare, Medicaid, and businesses are over $148 billion a year. If such statistics are daunting, the individual experiences are exponentially more terrifying.
The Alzheimer’s Project premieres 10 May at 9pm ET. Like HBO’s previous multi-tiered public service program, Addiction, it’s available in a number of formats and across platforms, from the main channels (including HD) to HBO On Demand (free from 11 May through 8 June), on DVD and streaming on line, along with supplemental shorts (for instance, “Identifying Mild Cognitive Impairment” or “The Benefit of Diet and Exercise in Alzheimer’s”) and a Tribute Wall on Facebook. The series is also reconfigured as a book published by Public Affairs Books; the segment The Memory Tapes, is on iTunes; other segments can be seen on Youtube and myspace. The short documentary, Grandpa, Do You Know Who I Am? with Maria Shriver, which premieres 11 May, is inspired by co-producer Shriver’s 2004 children’s book, What’s Happening to Grandpa?, which she wrote, she says, to help her children — and herself — come to terms with the disease’s effects on her father, Sargent Shriver. “A family is a collection of memories and stories,” she says. As The Alzheimer’s Project makes clear, the disease makes you reassess the value of that collection.
The project’s four segments are very different. The Memory Tapes, directed and Produced by Shari Cookson and Nick Doob, profiles seven individuals and their families at various stages of this inevitably progressive illness. After Bessie, whose story is introduced by a point-of-view image driving along a foggy road, the film turns to 76-year-old Fannie Davis of St. Louis, MO, upset that her doctor has decided she can no longer drive (“This is really something, to think that I can’t go where I want to go anymore”), Yolanda Santomartino, diagnosed six years ago and living in a nursing home in Maryland, charmed by her mirror reflection and afraid of imagined snakes in her wheelchair (“You try to make everything simple,” she tells her caretaker, “But you can’t”), and Joe Potocny, who has been writing a blog, Living with Alzheimer’s, since 2006. The film finds him at home in Oceanside, CA, where his wife Ann struggles with his loss as he does. In a blog post entitled, “How scarry [sic] is your back yard,” he writes (and reads here), “What scares me is not the not knowing, but when will that line come where I step over and don’t come back?” (9 October 2007).
As heartening as the intimacy of The Memory Loss Tapes can be, the stories here can also be desperately sad, as patients and their loved ones try to hang on to one another while also making an uneasy peace with the inevitable slipping away process. “I never had children, says Annie Mickow, now looking after her mother Josephine. “I almost feel like I’ve gained motherhood somehow.” Her mother likes to “put things in her moth,” and Ann berates herself for letting her get a small stone into her mouth while out walking on their farm in Blooming Prairie, Minnesota.
Another sort of approach is offered in John Hoffman and Susan Froemke’s Momentum in Science, which airs over two nights (11 and 12 May). A more conventional documentary, it features expert talking heads and animated images of the disease’s likely causes and current and potential treatments. Richard J. Hodes, director of the National Institute on Aging at NIH (National Institutes of Health) introduces various pieces of this two-hour show, with particular attention to the “exciting” inroads being made. While, as John C. Morris of Washington University observes, the disease “destroys brain cells in regions that give us human qualities,”
Several doctors mention Dr. Alois Alzheimer, the German pathologist who in 1906 discovered lesions in the brain of woman who died with dementia. Since then — and the realization that “seeing disease” in the form of dissected bodies and brains was a crucial step in medical research — scientists have discovered the beta-amyloid plaques that impair the activity of neurotransmitters, as well as the varieties of Alzheimer’s that suggest similar but different causes (early-onset patients belong to families with a particular gene mutation, late-onset patients develop the plaques for a range of reasons). David Bennett of Chicago’s Rush University Medical Center, points to the “religious orders studies” (nuns agree to be tested and to donate their organs after death), which suggest that dementia is less likely in people who have large social networks (one element in this phenomenon is “cognitive reserve,” when the usual Alzheimer’s pathology might develop — too much protein blocking synapses — but does not have the same effects on a susceptible individual and “an individual that is somehow protected.”
Bennett’s study of “the nature of the protection” is not unlike that of other researchers, who have found that healthy diet and a regular regimen of exercise can form a “protection.” Carl Cotman of UC Irvine has conducted a series of mice-on-wheels studies that offer “great promise in terms of behavioral interventions.” Other studies have narrowed the area of the brain affected (hippocampus) and early signs (hyperactivity that implies “evidence of compensation”). Some research proposes that drugs might help not only to slow the advent of symptoms, but also to treat the disease. Dale Schenk, Chief Scientific Officer/SVP of Elan Pharmaceuticals, is an emphatically earnest advocate of treatment (whatever you think of his job title). He insists that now is “a magical time,” when “the biology and the clinical understanding are, as we speak, getting put together for the first time.”
This coordination is still in process, of course. The Alzheimer’s Project shows heartbreak and pain even as it posits hope. It notes the generosity of the DeMoe family, brothers and sisters carrying the early-onset gene, succumbing one by one to the disease that took their father, and participating in a long-term study in hopes that they might affect treatments for next generations. Lori DeMoe notes tearfully, “Knowing how early my father died, he didn’t get to enjoy his grandkids. If my daughters get married, I always thought I’d be a really, really good grandma, and I probably won’t get to.”
Other difficult moments are illustrated in Caregivers, airing 12 May and directed by Bill Couturié. Children and partners, as well as patients, speak about the trauma of the disease — the mix of guilt, regret, anger, and brilliant generosity that overtakes caregivers. Daphne, an astrophysicist, is suffering from late stages of Alzheimer’s as her partner of 24 years, Jude, looks after her. While she is sometimes buoyed by Daphne’s “indomitable spirit,” she is also feeling increasingly alone. She attends a regular group discussion, where caregivers share their anguish and occasional inspiring moments. “I think of it as the long goodbye,” says one member, watching a loved one’s ability to communicate “diminish and diminish and diminish.” Jackie Harrell has had to out her husband Marvine in a home. She visits him frequently, feeds him and files his fingernails and helps with other patients too. “This is something that I can do,” she says, “To make me feel like an inner part of this.” “Do you ever miss the man you married?” asks Couturié from off-screen. “I certainly do,” she nods. “I like to say, ‘Can you come out of there? I’m out here. Why did you leave me?'”
If The Alzheimer’s Project cannot answer that question, it does provide a helpful introduction to this most pervasive and distressing disease. Sometimes poignant and sometimes flatfooted, it is insistently informative, often outstanding.