SUMMARY: In Nashville, the nonprofit Music for Seniors connects the city’s musicians with its older residents in an effort to build community and improve seniors’ quality of life. Now, the organization is teaming up with researchers at Vanderbilt University to see if the effects of its work can be measured -- and potentially leveraged to help patients with dementia and Alzheimer's. John Yang reports.
SUMMARY: What does it feel like to be diagnosed with early-onset Alzheimer's disease? Pam Montana and Chris Hannafan offer their 'Brief but Spectacular' takes on what it means to live with the disease and how their worlds have changed.
SUMMARY: According to Robin Williams’ widow, an autopsy has revealed that the comedian suffered from Lewy body dementia before he committed suicide. Susan Schneider Williams described the battle to treat and understand her late husband's symptoms as a game of Whac-A-Mole. William Brangham learns about the lesser-known but common illness from Dr. James Galvin of Florida Atlantic University.
WILLIAM BRANGHAM (NewsHour): After Robin Williams took his own life, his press representative said Williams was battling severe depression. His widow, Susan Schneider Williams, also said back then that he was struggling with depression and early stages of Parkinson’s disease
But this week, Mrs. Williams told ABC News and “People” magazine that an autopsy revealed something else. He had what is known as Lewy body dementia. She described battling a mysterious set of symptoms for a year, something she compared to playing Whac-A-Mole — quote — “They present themselves like a pinball machine,” she said. “You don’t know exactly what you’re looking at. I have spent this last year trying to find out what killed Robin, because we didn’t know. He didn’t know.”
Joining me now to help us understand more about this disease is neurologist Dr. James Galvin. He’s a professor and associate dean for clinical research at Florida Atlantic University.
Dr. Galvin, thank you for joining us.
It seems that before this news about Robin Williams broke, most of us had never heard of this disease. Can you tell me a little bit more about it?
DR. JAMES GALVIN, Florida Atlantic University: Sure.
So, Lewy body dementia may be the most common disease you have never heard of. It’s the second most common cause of memory problems after Alzheimer’s disease and affects over 1.3 million Americans. Its predominant symptoms are a progressive change in memory and other thinking functions, signs of Parkinson’s, so; slow movement, stiffness, balance problems, visual hallucinations, seeing things that aren’t there, like little people or furry little animals, fluctuations in levels of attention, concentration, and, lastly, a sleep disorder where people act out their dreams.
WILLIAM BRANGHAM: Among that huge array of symptoms, I’m curious about the particular visual hallucinations you described. Is that common for a certain type of dementia to have such specific hallucinations?
DR. JAMES GALVIN: It’s very common in Lewy body dementia.
Typically, if other dementias, other memory problems develop hallucinations, they’re not until much later in the course of the disease, and the hallucinations are not so well-formed.
What’s particularly characteristic of Lewy body dementia are these very well-formed hallucinations. They’re usually not frightening initially to the patient, but they are very well-formed. They usually can describe exactly what they’re seeing.
Duke University scientists have potentially discovered new avenues for Alzheimer's and dementia treatments.
They observed that in Alzheimer’s, immune cells that normally protect the brain instead begin to consume a vital nutrient called arginine.
By blocking this process with a drug, they were able to prevent the formation of ‘plaques’ in the brain that are characteristic of Alzheimer’s disease, and also halted memory loss in the mice.
What's more is that they were researching with a drug that has already begun human trials for cancer treatments—possibly paving the way for clinical trials in the near future.
While no technique that is tested in an animal can be guaranteed to work the same way in humans, the findings are particularly encouraging because, until now, the exact role of the immune system and arginine in Alzheimer’s was completely unknown.
The drug that was used to block the body’s immune response to arginine – known as difluoromethylornithine (DFMO) – is already being investigated in drug trials for certain types of cancer and may be suitable for testing as a potential Alzheimer’s therapy.
This follows on the heels of other recent breakthroughs in possible "plaque fighting" techniques for Alzheimer's patients.
SUMMARY: Confronted by her own grandmother’s illness, writer and neuroscientist Lisa Genova started her exploration of Alzheimer’s with one question: What does it actually feel like to have the disease? Her resulting novel, “Still Alice,” was adapted into a film that has been nominated for an Academy Award. Jeffrey Brown interviews Genova about why she turned to fiction.
GWEN IFILL (NewsHour): A new film, and the book that inspired it, are getting high praise this awards season for the spotlight they cast on the toll of early-onset Alzheimer’s disease.
Jeffrey Brown looks at the film and its subject, part of our occasional feature, 'NewsHour Goes to the Movies.'
JULIANNE MOORE, Actress: Man has an instinctive tendency to speak, as we see in the babble of young children.
JEFFREY BROWN (NewsHour): When we first meet Alice Howland, she’s 50 years old, an accomplished professor of linguistics, but something is beginning to happen.
JULIANNE MOORE: I hope we convince you that by observing these baby steps into the — into — I — I knew I shouldn’t have had that champagne.
JEFFREY BROWN: We watch as Alice loses words, gets lost in familiar places, forgets appointments. Eventually, she’s diagnosed with early-onset Alzheimer’s.
JULIANNE MOORE: Why won’t you take me seriously?
JEFFREY BROWN: It’s an up-close and sometimes raw portrait shown from the perspective of someone with a disease that today affects more than five million Americans, including 200,000 who experience early onset.
GWEN IFILL (NewsHour): We have reported often on how the number of Americans coping with Alzheimer’s disease will grow in coming years. Now a new study finds Alzheimer’s may already account for many more deaths than realized.
Hari Sreenivasan, reporting from our New York studio, gets the details.
HARI SREENIVASAN (NewsHour): The CDC ranks Alzheimer’s as the sixth-leading killer in the U.S., accounting for nearly 85,000 deaths a year. But the study in the journal “Neurology” puts the annual death toll around half-a-million, making it the third-leading cause of death, just behind heart disease and cancer, and ahead of chronic lung disease and strokes.
Dr. Bryan James, an epidemiologist with Rush University Medical Center in Chicago, led the research. He joins us now.
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HARI SREENIVASAN: So, give me an example of how Alzheimer’s is the underlying cause of death, if a heart attack is what’s listed on the death certificate.
DR. BRYAN JAMES, Rush University Medical Center: Right.
Ya, I think many people don’t realize that Alzheimer’s disease is a fatal disease. It leads to death very slowly over many years. It starts in the part of your brain that controls your memory and your thinking, and we’re all pretty much aware of that. But what people don’t know is that, over time, it slowly spreads to the parts of your brain that control your more basic functions, like swallowing and breathing and your heart rate.
And this can lead to fatal conditions such as pneumonia and heart failure.
JUDY WOODRUFF (Newshour): This weekend, the crossword puzzle marks its hundredth birthday. First published in a New York newspaper, it's become a daily ritual for many and even been rumored to help stave off dementia. But there isn't much evidence to back up that claim.
On the other hand, special correspondent Jake Schoneker reports on new research using video games to sharpen an aging mind.
JAKE SCHONEKER: Fifty-seven-year-old Ashley Wolff has been a self-employed children's author and illustrator for 25 years, working out of her small home studio in San Francisco. She says she loves being her own boss, but that working from home can be a challenge.
ASHLEY WOLFF, author and illustrator: Working from home allows me really to just let my attention deficit problem fly.
JAKE SCHONEKER: Like many people her age, she's recently found herself forgetting things more often, and getting easily distracted from work. She was worried about these problems getting worse as she got older, especially because her mother, at age 85, was beginning to exhibit signs of Alzheimer's disease.
ASHLEY WOLFF: My sister and I are watching our mother kind of lose her memory. And we thought, gee, wow, she always did the New York times crossword puzzle, and always seemed so sharp, and here she is, none of that helped her. And we thought, we should try something.
JAKE SCHONEKER: So she decided so try cognitive training, a new breed of video game designed to exercise the brain. She now gets a daily reminder to log on to her laptop for a 15-minute mental workout.
GWEN IFILL (Newshour): New research suggests there may be some good news in the struggle against dementia.
Two recently released studies show severe memory loss declining among healthier and better educated populations. In England and in Wales, dementia rates over the last two decades have dropped by 25 percent among those 65 and older.
And in Denmark, the percentage of elderly whose cognitive abilities were severely impaired also dropped between 1998 and 2010.
In the United States, about five million people have Alzheimer's disease, but that number is expected to rise sharply as baby boomers age.
For more, we're joined by Dr. Murali Doraiswamy, director of the Neurocognitive Disorders Program at the Duke University School of Medicine.
JEFFREY BROWN (Newshour): And now the rising toll from dementia economically, medically, and emotionally.
A study by the RAND Corporation published in this week's New England Journal of Medicine estimates the cost of caring for Americans with Alzheimer's and other forms of dementia between $157 billion and $215 billion dollars a year. On a per-person basis, that translates into $41,000 to $56,000 dollars annually.
The costs include direct medical spending, informal family care, lost productivity and long-term care. The latter accounted for 84 percent of total costs. And the problem is growing fast. The costs and number of people with dementia are expected to more than double within 30 years.
We explore the findings and implications with two experts, Dr. Ronald Petersen, the director of the Alzheimer's Research Center at the Mayo Clinic, and Dr. Richard Hodes, director of the National Institute on Aging, which is part of NIH. His institute financed the new study.
A study of a rare gene mutation that protects people against Alzheimer’s disease provides the strongest evidence yet that excessive levels of a normal brain substance, beta amyloid, are a driving force in the disease — bolstering hopes that anti-amyloid drugs already under development might alter the disease’s course or even prevent it.
So far, the drugs have not succeeded. But scientists not connected with the new study said it suggested that the drug companies’ big bets on anti-amyloid treatments could yet pay off.
The implication for drug development “is hugely important,” said Dr. David Altshuler, a genomics expert at Harvard Medical School and the Broad Institute of Harvard and M.I.T.
And Dr. Samuel Gandy, an Alzheimer’s researcher who directs the Mount Sinai Center for Cognitive Health, called the finding the most significant in the field in two decades, since researchers first reported a mutation that leads to the disease.
The protective mutation, whose discovery was reported online Wednesday in the journal Nature, is highly uncommon — it is not the reason most people do not develop Alzheimer’s. But what intrigues researchers is how it protects the brain.
Mutations that cause Alzheimer’s lead to excessive amounts of beta amyloid in the brain; by contrast, the protective mutation slows beta amyloid production, so people make much less.
“This paper provides strong evidence that it would work in the general population if you did it right,” Dr. Altshuler said.
Scientists at the drug companies agreed. “We are thrilled,” said Ryan Watts, one of the authors of the new paper and head of the neurodegeneration labs at Genentech, which is developing two drugs to reduce brain amyloid levels.
Dr. Richard Mohs, leader of neuroscience early clinical development at Eli Lilly, said the company was “very encouraged by these study results.” They show, he said, that despite an initial failure, the strategy of focusing on drugs to reduce beta amyloid levels is “a logical path for the development of effective therapies that may slow disease progression.”
Many questions remain, of course. Most people do not have the protective gene mutation, but as common as Alzheimer’s is, most people do not get it. It is not clear why. And most who develop Alzheimer’s do not have one of the rare gene mutations that cause it. The reasons for their disease are unclear.
MARGARET WARNER (Newshour): The numbers are daunting. More than five million Americans now suffer from Alzheimer's disease and related dementias. And barring a breakthrough, the figure could triple by 2050.
That prospect prompted the first-ever national Alzheimer's plan mandated by Congress and formally announced today. The secretary of health and human services, Kathleen Sebelius, set a deadline of 2025 to find effective ways to prevent and treat the disease.
What if you could prevent or slow Alzheimer's disease just by giving patients nasal spray containing insulin, just once or twice a day after a meal?
Researchers have been exploring that possibility for some time. But a new study out Monday provides the best indications yet that such a treatment might provide some hope for helping at least early stage Alzheimer's patients.
Results from the trial -- a so-called Phase II trial designed to test the safety and early efficacy of such an approach -- were published in the Archives of Neurology*. Scientists tested 104 patients with either early to moderate-stage Alzheimer's or mild cognitive impairment (often a harbinger for Alzheimer's) to see how they responded to the insulin spray. Thirty-six participants received a moderate dose of the insulin spray twice a day for four months, 36 got double that dose, and 30 of the patients were on placebo.
The initial results were encouraging.
Compared to the placebo group, patients who took the moderate dose did 25 percent better on testing for memory than the placebo group over a four-month period, said Suzanne Craft, who led the research at the Veterans Affairs Puget Sound Health Care System and University of Washington School of Medicine. Craft will discuss the results on the NewsHour Monday.
"We also saw improvement on a test of general thinking by both groups that were treated with insulin," Craft said. "Their family members also said they showed a better ability to function daily like managing things at home, taking care of daily finances."
"The proof of principle here is important because it tells us that this area of study is important," said Craft. "Areas of insulin regulation are important targets for Alzheimer's Disease."
More than 5 million Americans have Alzheimer's, and that number is expected to swell in coming years as the population ages.
The idea behind the insulin trial, Craft said, is that researchers increasingly understand that insulin plays an important role in the brain in both supporting memory, processing new information and protecting against the toxic effects of proteins like beta-amyloid, which collects in the brains of people with Alzheimer's.
"Alzheimer's patients," she said, "seem to have a deficiency of insulin in their brains. This led to the hypothesis that if we were to supplement insulin, we might be able to improve their symptoms or the pathology that is causing the disease. We were searching ways to get insulin to the brain. What we came up with was administering it to the nose -- using a specialized device that targets insulin to the upper part of the naval cavity. Insulin reaches the brain within a 15 to 30-minute time-frame that way."
Doctors also took PET scans of some patients, comparing the decline of the glucose metabolism in the brains.
Patients who took a daily dose of insulin had less of a decline in that metabolism than the placebo group.
"I absolutely believe this is an important step forward," said Craft. "It needs to be taken to the next level of a Phase III trial (the gold standard) to see if it can be a therapy. At the very least we hope that if we can stabilize patients with mild cognitive impairment, they're quite functional. To stabilize that group would be a huge advantage. And there are reasons based on biology of what insulin does to examine whether it can do more than just stabilize pathology: Could it reverse or improve that pathology?"
Dr. Laurie Ryan, who oversees clinical trials of Alzheimer's Disease at NIH's Institute of Aging (which funded this study, too) cautioned that individuals should not place too much hope in a Phase II trial just yet.
"It's very encouraging," she said. "But there's not going to be just a single treatment for Alzheimer's. We're exploring this. We're also studying and testing other drugs and vaccines. There's not going to be a single magic bullet."
"I think there are several pathways to developing Alzheimer's disease," added Craft. "So an approach that might work for one group of patients might not work for another. And I think that makes things a bit more complicated. We'd like to have a one-size-fits-all approach, but that's not likely."
The Grammy Award-winning singer Glen Campbell announced this week that he is suffering from Alzheimer's disease. And then he said he'd be going on the road for a farewell tour.
It's not unusual for a public figure to reveal a diagnosis of the insidious disease. Former President Reagan told the world of his battle with Alzheimer's in a poignant letter in 1994. Actor Charlton Heston disclosed, via a taped statement, that he was suffering from symptoms similar to those of Alzheimer's. Peace Corps founder Sargent Shriver's 2003 diagnosis was also announced. Although Heston and Shriver later made occasional appearances — and the "Ben Hur" star gave an interview — those prominent men essentially exited the public stage. Or to quote Heston quoting Shakespeare in his statement, they bade farewell and "melted into air, into thin air."
What's extraordinary about the 75-year-old Campbell, who revealed his illness in an interview with People magazine, is his intention to stay in the spotlight — and ask his fans' indulgence. That decision, if he can carry it out, is a milestone in the fight against Alzheimer's, a disease that currently has no cure, afflicts 5 million Americans and will only strike more as baby boomers age.
Campbell's tour is an opportunity to show not only how widespread this disease is but that life goes on even after one is diagnosed with it. Like Michael J. Fox, who has put a working actor's face on living with Parkinson's disease, Campbell — the singer known for such country pop classics as "Wichita Lineman" and "Rhinestone Cowboy" — can put a face on living with Alzheimer's.
Guidelines for diagnosing Alzheimer’s — the memory-stealing disease — have been updated for the first time in 27 years.
The new guidelines recognize the disease as a continuum, not a single stage, according to a release Tuesday by the National Institutes of Health's National Institute on Aging and the Alzheimer’s Assn.
In 1984, Alzheimer’s was defined as having a single symptom — dementia — and the diagnosis was only confirmed at autopsy by the abnormal amounts of proteins forming plaques and tangles in the brain.
The new guidelines reflect the more modern understanding of the disease: Alzheimer’s can start progressing up to 10 years before signs of dementia.
And autopsies can reveal a brain riddled with plaques in someone who showed no signs of dementia.
In clinical settings, the guidelines reflect what many doctors already use to diagnose the disease. For example, memory isn’t always the first thing to go; vision, literary skills and speech can deteriorate while memory remains intact. And while Alzheimer’s is rare in people younger than 40, the disease progresses the same way as in a 90-year-old. And testing for mutations in three genes can help determine whether a patient has early onset of Alzheimer’s (though 10 related genes are known).
Not all the major changes will be evident in the doctor’s office, however. Many of the new recommendations for diagnosing the disease are for researchers only, especially for diagnosing the earliest stages of brain changes. Guidelines that use biomarkers, or medical indicators of a disease, aren’t standardized yet for clinical use, such as using positron emission tomography (PET) scans or analyzing cerebrospinal fluid to find amyloid buildup.
But some cutting-edge research tools will now be standardized to diagnose the disease’s early stage: mild cognitive impairment, having memory problems others notice but that don’t interfere with daily life. Such impairment may or may not turn into Alzheimer’s dementia. But in some specialized clinical settings, the diagnosis can be made clearer by using biomarkers such as levels of protein in the cerebrospinal fluid or atrophy in the brain as revealed by magnetic resonance imaging.
OUR government is ignoring what is likely to become the single greatest threat to the health of Americans: Alzheimer’s disease, an illness that is 100 percent incurable and 100 percent fatal. It attacks rich and poor, white-collar and blue, and women and men, without regard to party. A degenerative disease, it steadily robs its victims of memory, judgment and dignity, leaves them unable to care for themselves and destroys their brain and their identity — often depleting their caregivers and families both emotionally and financially.
Starting on Jan. 1, our 79-million-strong baby boom generation will be turning 65 at the rate of one every eight seconds. That means more than 10,000 people per day, or more than four million per year, for the next 19 years facing an increased risk of Alzheimer’s. Although the symptoms of this disease and other forms of dementia seldom appear before middle age, the likelihood of their appearance doubles every five years after age 65. Among people over 85 (the fastest-growing segment of the American population), dementia afflicts one in two. It is estimated that 13.5 million Americans will be stricken with Alzheimer’s by 2050 — up from five million today.
Just as President John F. Kennedy, in 1961, dedicated the United States to landing a man on the moon by the end of the decade, we must now set a goal of stopping Alzheimer’s by 2020. We must deploy sufficient resources, scientific talent and problem-solving technologies to save our collective future.
As things stand today, for each penny the National Institutes of Health spends on Alzheimer’s research, we spend more than $3.50 on caring for people with the condition. This explains why the financial cost of not conducting adequate research is so high. The United States spends $172 billion a year to care for people with Alzheimer’s. By 2020 the cumulative price tag, in current dollars, will be $2 trillion, and by 2050, $20 trillion.
If we could simply postpone the onset of Alzheimer’s disease by five years, a large share of nursing home beds in the United States would empty. And if we could eliminate it, as Jonas Salk wiped out polio with his vaccine, we would greatly expand the potential of all Americans to live long, healthy and productive lives — and save trillions of dollars doing it.
Experience has taught us that we cannot avoid Alzheimer’s disease by having regular medical checkups, by being involved in nourishing relationships or by going to the gym or filling in crossword puzzles. Ronald Reagan suffered the ravages of this disease for a decade despite the support of his loving family, the extraordinary stimulation of his work, his access to the best medical care and his high level of physical fitness. What’s needed are new medicines that attack the causes of the disease directly.
So far, only a handful of medications have been approved by the Food and Drug Administration to treat Alzheimer’s, and these can only slightly and temporarily modify symptoms like forgetfulness, disorientation and confusion. None actually slows the underlying neurodegeneration.
In the mid-1980s, when our country finally made a commitment to fight AIDS, it took roughly 10 years of sustained investment (and about $10 billion) to create the antiretroviral therapies that made AIDS a manageable disease. These medicines also added $1.4 trillion to the American economy. The National Institutes of Health still spend about $3 billion a year on AIDS research, while Alzheimer’s, with five times as many victims, receives a mere $469 million.
Most of the medical researchers who study Alzheimer’s agree on what they have to understand in order to create effective drugs: They must find out how the aberrant proteins associated with the disease develop in the brain. They need to model the progression of the illness so they can pinpoint drug targets. And ultimately they must learn how to get drugs to move safely from the blood into the brain.
A breakthrough is possible by 2020, leading Alzheimer’s scientists agree, with a well-designed and adequately financed national strategic plan. Congress has before it legislation that would raise the annual federal investment in Alzheimer’s research to $2 billion, and require that the president designate an official whose sole job would be to develop and execute a strategy against Alzheimer’s. If lawmakers could pass this legislation in their coming lame-duck session, they would take a serious first step toward meeting the 2020 goal.
Medical science has the capacity to relegate Alzheimer’s to the list of former diseases like typhoid, polio and many childhood cancers. But unless we get to work now, any breakthrough will come too late to benefit the baby boomers. Whether the aging of America turns out to be a triumph or a tragedy will depend on our ability to fight this horrific disease and beat it before it beats us.
