Sitting before a mostly absent Senate committee in February, actor Seth Rogen sought to draw attention to an as yet incurable disease that is quietly killing millions of Americans and, perhaps worse, reducing their final years to a harrowing ordeal for both them and their families. He had come to Washington, D.C., to talk about Alzheimer's.
Rogen, known more for his vulgar comedy and stoner persona than his activism, had a personal reason for testifying. In 2006, his mother-in-law was diagnosed with early-onset Alzheimer's at 55. At first he thought this meant a future of lost keys and mismatched shoes. A few years later, the family faced "the real, ugly truth of the disease," Rogen testified. "After forgetting who she and her loved ones were, my mother-in-law, a teacher for 35 years, then forgot how to speak, feed herself, dress herself and go to the bathroom herself—all by the age of 60."
An estimated 5.2 million Americans have Alzheimer's, and there is no treatment that prevents, slows, stops or reverses it. If doctors don't find a cure, the future is grim: By 2025, the number of people age 65 and older with Alzheimer's is expected to grow by 40 percent to 7.1 million Americans, according to the Alzheimer's Association's 2014 Alzheimer's Disease Facts and Figures report. Americans are living longer than ever before, many well into their 80s and 90s. With advanced age the number one risk factor for Alzheimer's, there could be as many as 16 million Americans with Alzheimer's in 2050, costing $1.2 trillion in health care, long-term care and hospice care.
"The situation is so dire that it caused me, a lazy, self-involved, generally self-medicated man-child, to start an entire charity organization," Rogen told the few senators who had bothered to show up, referring to Hilarity for Charity, which raises money to support Alzheimer's research and help families.
"Americans whisper the word Alzheimer's because their government whispers the word Alzheimer's," he added. Later, Rogen blasted the absent senators, tweeting, "Not sure why only two senators were at the hearing. Very symbolic of how the government views Alzheimer's. Seems to be a low priority."
WHERE'S THE MONEY?
"The epidemic is upon us," says Dr. John Trojanowski, co-director of the Center for Neurodegenerative Disease Research and director of the Institute on Aging, both at the University of Pennsylvania School of Medicine. "It's a very difficult thing to say to a patient that there's nothing we have for you, but that is the honest response. There are no disease-modifying therapies for Alzheimer's."
Alzheimer's is one of the costliest chronic diseases to the country. Total costs of caring for Americans with Alzheimer's and other dementias is expected to reach $214 billion this year, with Medicare and Medicaid covering $150 billion and out-of-pocket expenses reaching $36 billion.
Historically, Alzheimer's research has been grossly underfunded. The National Institutes of Health (NIH) dedicated $5.3 billion to cancer research in 2013, nearly $3 billion to HIV/AIDS, $1.2 billion to heart disease and $1 billion to diabetes. Alzheimer's research received just over $500 million.
"Everybody knew there was an impending crisis 20 years ago, but people were optimistic that some of the 20 or so drugs in trials would yield at least one breakthrough," says Dr. Murali Doraiswamy, professor of psychiatry at the Duke Institute for Brain Sciences and coauthor of The Alzheimer's Action Plan. "The reality is, in the last 20 years we haven't had a single drug approved."
(Doraiswamy later noted that Aricept Exelon and Razadyne were approved for Alzheimer's in 1996-2001 but entered testing some 25 years ago. Namenda was approved in 2003 but is a 40-year-old repurposed drug.)
In January 2011, President Barack Obama signed the National Alzheimer's Project Act (NAPA) into law. As a result, the first National Plan to Address Alzheimer's Disease was released in May 2012, detailing five goals to prevent and effectively treat Alzheimer's by 2025. In January, Congress passed an unprecedented $122 million increase for Alzheimer's research, education, outreach and caregiver support. Still, funding remains a fraction of the $2 billion that the NAPA Advisory Council recommended.
"I believe that this disease will be the defining medical condition of our generation—hopefully not the next generation," says Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer's Disease Research Center and chair of the Advisory Council for NAPA. "If we don't get on top of it, it will bankrupt the health-care system."
While the number of deaths due to HIV, stroke, heart disease and prostate cancer all declined between 2000 and 2010, deaths attributable to Alzheimer's increased 68 percent, according to the Alzheimer's Association. It is now the sixth leading cause of death in the U.S., and a study published earlier this month suggested Alzheimer's deaths are dramatically undercounted.
Women in their 60s are twice as likely to develop Alzheimer's as breast cancer. And by the time a woman turns 65, her estimated lifetime risk of developing Alzheimer's is 1 in 6 (it's nearly 1 in 11 for men). Older African-Americans are about twice as likely as older whites to have Alzheimer's and other dementias.
On average people with Alzheimer's survive anywhere from four to eight years after diagnosis, though some people live 20 years or longer. The emotional, physical and financial effects on family and caregivers can be severe.
SUFFERING WITH THE STARS
When Seth Rogen first learned of his mother-in-law's diagnosis, he was shocked. "I had no idea that someone that young could even get Alzheimer's," he tells Newsweek. "The speed and aggressiveness with which it attacked was something I really didn't have any context for... My image of it was like, You forgot stuff. But that is really the tip of the iceberg. You forget how to walk and move and talk."
Nearly one quarter of American adults mistakenly believe the disease is hereditary. When asked about which illness they were most fearful of getting, Americans 60 and older rank Alzheimer's or dementia (35 percent) above cancer (23 percent) and stroke (15 percent).
"There's a disease that's killing our parents and grandparents and no one seems to be doing anything about it," Rogen says. "One day it's going to kill us. It hasn't become trendy to care about... Part of that is because it's really depressing and there's not a lot of hope associated with it."
Trojanowski and other doctors say there's a stigma to the disease. "It's shameful. You don't want to talk about the fact that your parents have Alzheimer's," he says. "Another reason is, the patients themselves are demented; they can't advocate for themselves. There isn't a Michael J. Fox equivalent for Alzheimer's."
In today's media-centric world, a celebrity diagnosis, though no more devastating than anyone else's, has the ability to raise awareness—and dollars—for a disease. Angelina Jolie, Katie Couric and Lance Armstrong have become public faces for the fight against cancer. Magic Johnson did the same for HIV/AIDS. Christopher Reeve became a crusader for stem cell research. Michael J. Fox started his own foundation dedicated to finding a cure for Parkinson's disease, with which he was diagnosed in 1991.
Alzheimer's has struggled to keep pace with these monster marketing and fund-raising machines. Former president Ronald Reagan was among the most notable sufferers. Country music star Glen Campbell, 77, and the University of Tennessee women's basketball coach Pat Summitt, 61, went public with their diagnoses in more recent years.
"People think it's an old-age person's disease," Petersen says. "It's like cancer was 25 years ago: You didn't mention the C word. Cancer activists have done an excellent job of destigmatizing it, putting it out there, and making it a disorder that needs attention. Alzheimer's is still behind the eight ball on that score."
TURNING THE TITANIC
Where progress has been made is in detection. When the disease develops, two abnormal structures—called plaques and tangles—disrupt nerve cells' all-important workflow in the brain, contributing to cell death. Almost everyone develops some plaques and tangles as they grow older, but those with Alzheimer's have far more. Until recently, the only way scientists could tell, for sure, if a person had Alzheimer's was to conduct an autopsy. Now, they can use new brain scan technology or test spinal fluid to test for signs before symptoms show up.
New studies focus on delaying onset and slowing progression. A large clinical study, known as A4, targets healthy seniors who do not show signs of memory problems but do have a silent buildup of plaques in the brain. The Alzheimer's Prevention Initiative focuses on the few people with a high genetic risk of developing Alzheimer's. One trial will test a new drug among the world's largest extended family to experience Alzheimer's disease, a group of thousands of relatives in Colombia who carry a specific gene mutation. Another trial, called DIAN-Trial Unit, investigates a new drug for people with genetically based, young-onset Alzheimer's.
Rare, inherited forms of the disease have been linked to three genetic mutations that guarantee a person will develop Alzheimer's, probably before the age of 65 and sometimes as young as 30. Yet these mutations are the only known definitive cause of the disease, and they account for less than 1 percent of cases. Having one or more first-degree relatives with the disease increases your risk, as do a host of other conditions, including obesity, diabetes, high cholesterol and smoking. Physical activity, healthy diet, mental exercise, social engagement and education may all help reduce the risk.
In another new study, Harvard scientists discovered that a protein called REST—which, in healthy older adults, protects neurons in the brain from the stresses of aging—seems to be significantly diminished in people with Alzheimer's and other dementias. There is a chance that REST could lead to new drugs for treatment, but considerable testing and further studies must come first.
"We don't fully understand what causes Alzheimer's, so in a sense we're shooting in the dark," says Doraiswamy. "When drug companies start their clinical drug programs, there's often a 10-year lag period. In the eight or nine years it takes the drug to move... into human trials, the science simultaneously progresses to where we've learned something new. A lot of these companies are like the Titanic; they can't change directions quickly."
ONE LITTLE GLITCH
For Pam White, it happened slowly. A model-turned-social worker, she started buying books she already had at home. Sometimes she got lost driving. Other times she couldn't do simple calculations. Mail disappeared. She was always losing her keys. Little things, like her cooking, seemed to be off.
"My dad took over many tasks and roles that used to be my mom's, but it happened so gradually and naturally, none of us ever made much of it," says Pam's youngest son, Luke White, 32, a psychiatrist.
In 2009, when Pam was 61, she was diagnosed with early-onset Alzheimer's. The news came just one year after she had started writing a book about her mother, renowned painter Marian Williams Steele, who had died of Alzheimer's in 2001 at 89.
"There is so much tension in loving someone who is in the process of changing, who will inevitably die because of this disease," says Banker White, 40, Pam's eldest son, a documentary filmmaker who starting rolling his camera right after she was diagnosed.
The result of all that footage is The Genius of Marian, a documentary about the Whites' experience, co-produced with his wife Anna Fitch. Spanning the first three years of Pam's illness, the film (named after the book she was writing) weaves together footage of her everyday life and progressive illness with old family videos and Marian's whimsical paintings that hang on the walls of the Whites' home in Dedham, Mass. The film debuted last year at New York's Tribeca Film Festival, will be released theatrically this month by TUGG and will air on PBS in September.
In the film, nothing is off-limits—not the bleak doctor visits nor tense conversations about medication nor the countless confused, absent stares that cross Pam's face. We watch her forget how to dress herself. At an appointment with her neurologist, she can't name the image on a flash card (a bench) and doesn't know what year it is ("19-something"—it was 2011).
For years, the White family kept Pam's condition a secret, while she vacillated between denial and acceptance. "I don't have it. Yes I do. I do. I have it," she says in the film.
In December, her husband, Ed White, 69, retired from his investment management business to care for her at home. Their daughter, Devon, 37, who lives in neighboring Brookline, visits often with her own family. Ed also hired a part-time caregiver to help. Still, he only takes four to six days off every couple of months to play golf with friends.
"My biggest problem is, I sometimes feel like I'm caged. I can't even go buy a paintbrush without going through the big rigmarole of getting Mom dressed up and getting in the car," Ed says in the film. "So I just have to—forget it. So? Remember the phenomenal life that she's given me.... So I sure as hell owe her this, even if it gets frustrating."
Some of the most intimate scenes in the film come from Pam's video diary, including the ending.
"I live for my family and my children," Pam says, "and one little glitch is that I have developed Alzheimer's. Initially, I was quite distressed and upset about it, but it doesn't really matter. It doesn't really change anything, so I don't feel sad and I don't feel regret. I feel blessed that I have this wonderful family and a husband who is extraordinarily wonderful. I just feel like, maybe the way my mother did before she was dying. It just was the way it was. And remembering, keeping, cherishing all the times I had with friends and family. So it's all good. No regrets."
Watching the clip, Ed pumps his fist in the air.
"It's very important that that movie got made," Rogen says. "That's the exact type of thing that's going to help: people sharing their personal experiences, making people realize that the disease is not how it's perceived."
"They say Alzheimer's is a caretaker's disease, and it really is. It requires a lot of work and it lasts a very long time," Rogen adds. "One of the reasons my speech got so much attention is because people were shocked that's what I was actually talking about. In a way, that was a major victory," he says. "But it shows how much people weren't talking about Alzheimer's—the mere fact that [my testimony] was a story."
This article has been updated to include a clarification from Dr. Doraiswamy on drug approvals.