En español l The most expensive disease in America is devouring federal and state health care budgets, and depleting the life savings of millions of victims and their families. But the greatest cost of Alzheimer's disease and other forms of dementia is not financial, but personal. This cruel ailment steals our memories, steals our independence and finally steals our dignity by eroding the ability to manage the basic tasks of daily life.
Recent studies show that the cost of caring for Americans with Alzheimer's disease and other dementias has surpassed the cost of treatment for cancer patients or victims of heart disease. And these costs are virtually certain to go up. While the deaths from some cancers and heart disease are declining, the number of Alzheimer's cases continues to increase every year as the population grows older. "If we don't get some control over this disease," says Huntington Potter, a neurobiologist at the University of Colorado School of Medicine, "it's going to bankrupt both Medicare and Medicaid."
And yet Alzheimer's is an also-ran when it comes to federal funding for research on prevention and treatment. In the intense political competition for federal dollars, other diseases come out far ahead of Alzheimer's. Washington has committed some $5.4 billion this fiscal year to cancer research, about $1.2 billion to heart disease and $3 billion to research on HIV/AIDS. Research funding for Alzheimer's will reach only about $566 million.
"It's just a fact that some diseases have stronger political backing, and that leads to federal funding," says Sen. Susan Collins, the Maine Republican who chairs the Senate Special Committee on Aging. "If you contrast our Alzheimer's funding to the other major diseases, or compare the spending on research to the cost of care, we're not spending nearly enough to find ways to deal with this problem."
A devastating disease
The Alzheimer's Association estimates that 5.2 million Americans had Alzheimer's disease in 2014, a figure that has risen steadily over the years. Nearly two-thirds of Alzheimer's sufferers are women. Alzheimer's is the most common form of dementia, which is a collective term for a number of conditions marked by a loss of mental abilities. Generally the disease begins near the hippocampus, the brain's memory center, and then spreads to areas of the brain that control language, judgment and physical activity.
The disease was named for a German physician, Alois Alzheimer, who presented a case study in 1906 of a female patient exhibiting loss of memory and other cognitive issues. An autopsy of her brain showed the buildup of proteins that are now known to be hallmarks of the diseases. These proteins form clumps known as "plaques," which appear to contribute to neuron death, and "tangles" of protein fiber that disrupt the neuron's transit system. Eventually communication between neurons breaks down.
Young people can develop Alzheimer's, but the disease is most common among those over 65. It is degenerative, which is to say that the plaques and tangles get worse over time. There is no cure for Alzheimer's, and no treatment that appears to stop its spread in the brain. "There's never been a patient who recovered from Alzheimer's," notes Robert Egge, chief public policy officer at the Alzheimer's Association.
Experts emphasize that the severe decline in mental capacity caused by Alzheimer's is not a normal sign of aging. The minor problems that people describe as "senior moments" — you can't find your keys one morning, or you can't pull up the name of the group that sang "Stop! In the Name of Love" — are common and not indicative of any disease. Signs of a clinical state of dementia, in contrast, are much more serious: You can never remember where you put your keys, or you have trouble remembering just about anybody's name.
Since Alzheimer's is slow to progress, the disease can linger for years, or decades in some cases. And that makes the cost — both for government insurance programs and for families, which frequently bear the burden of daily care — extremely high. "Because there is no treatment to stop the disease, an Alzheimer's patient is probably going to need some type of care for years and years," Egge says.
Alzheimer's currently costs the United States some $214 billion annually, according to federal government estimates. Care of the victims will cost Medicare and Medicaid $150 billion in the current fiscal year; the remaining costs will fall largely on patients and their families. A 2014 study by Caring.com, a website for family caregivers, reported that 42 percent of families that include someone with Alzheimer's spend more than $20,000 per year for care.
This situation makes families desperate to find any kind of medical treatment that might relieve the burden. When Harry Johns, the president of the Alzheimer's Association, appeared recently on a C-SPAN interview program, caller after caller asked him whether this drug or that supplement might be the miracle cure they're hoping for. A somber Johns had to give the same disappointing answer each time: "We have not yet found any substance that deals with the basic causes of the disease."
That makes the need for a massive government effort to fund research critical, experts say.
"We must initiate a global conversation about Alzheimer's disease and other dementias," said Sen. Bill Nelson of Florida, the ranking Democrat on the Senate Aging committee. Nelson notes that his state, with a large population of seniors, has been particularly hard-hit by Alzheimer's. But research funding remains inadequate, the senator says, at least partly because of a dearth of knowledge about Alzheimer's. "Despite the prevalence of the disease, it is still widely misunderstood," he said.
The stigma of dementia
Why, then, has the federal government been so stingy about funding research on a problem that costs the nation more than any other medical condition? Several explanations have been offered.
"I think the problem is that there's still a stigma attached to Alzheimer's and other dementias," Collins says. "People don't want to talk about it. By contrast, the LGBT groups have no qualms about campaigning for HIV/AIDS research. The cancer advocacy groups are extremely well-organized, vocal and politically skillful, with their Race for the Cure and everybody wearing pink for a month."
For cancer, at least, this was not always the case, Collins says. "When I was growing up, people wouldn't even say the word 'cancer,' " she recalls. "They would sort of whisper about it; they called it 'the big C.' And that's about where we are with Alzheimer's today."
Another explanation may lie in the typical course of Alzheimer's disease. It can take years or decades for the protein blockage in the brain to cause diagnosable cognitive problems. "We're not terribly good at getting ahead of slow-building conditions," says Egge of the Alzheimer's Association. "The general sense is, it's a problem, but we have time to deal with it."
For diseases such as cancer or HIV/AIDS, there are high-profile survivors who can tell their own stories to promote research. But Alzheimer's is a disease with no prominent survivor — since there have been no survivors so far — who can personify a campaign for more federal funding.
There has been some increase in the federal commitment to Alzheimer's research in recent years. In 2011, Congress created a new approach to the disease called the National Alzheimer's Project. This mandated the nation's first "National Plan to Address Alzheimer's Disease," which was released in 2012 and set a target date of 2025 to develop methods of prevention and effective treatment. To help reach this ambitious goal, Congress added $100 million in 2014 to the National Institute on Aging's portfolio for Alzheimer's research, and doubled the $100 million going to the so-called BRAIN initiative (a classic Washington acronym that stands for "Brain Research through Advancing Innovative Neurotechnologies").
All of which sounds impressive but may actually fall well short of the need. Ronald Peterson, M.D., of the Mayo Clinic, who chairs an advisory council for the National Alzheimer's Project, told Congress that meeting the 2025 goal for prevention and treatment will require $2 billion annually over the next decade in research funding. But Congress to date has never approved more than $600 million in annual funding — less than one-third of Peterson's minimum requirement.
If there were sufficient funding for Alzheimer's research, there are several promising areas of study that could bear fruit.
For one thing, it has been known for some time that people born with Down syndrome have a heightened propensity to develop the cranial plaques and tangles that characterize Alzheimer's. The point that interests Huntington Potter, of the University of Colorado, is that many Down patients never develop dementia. "In an autopsy, when we open up the brain [of these patients], we say: 'Look at all those plaques and tangles. This person should have had Alzheimer's — but he didn't.'
"If we could understand how these people avoid the dementia," Potter says, "maybe we could figure out how to prevent Alzheimer's dementia among all people as they age."
Another intriguing line of study involves rheumatoid arthritis, a painful autoimmune disorder. People suffering from this type of arthritis generally do not get dementia; your joints may hurt, but your mind will stay alert.
Figuring out the reason for this connection might be yet another way to find preventive treatment for Alzheimer's, Potter says.
"For a while, we were working on the hypothesis that the pills arthritis patients took for pain — particularly NSAIDs like aspirin and ibuprofen — tended to stave off dementia," Potter says. "It was a logical idea, but extensive studies of NSAID drugs all failed miserably. So now we are looking for some other pathway between the arthritis and the reduced rate of dementia."
The need for funding
Potter says that some approaches to Alzheimer's prevention bandied about in the press don't seem to work in practice. It's often said, for example, that older people who do daily crossword puzzles or take up a new language will exercise their brains and thus stave off dementia. Sadly, the research doesn't bear this out. "Some studies suggest that if you have spoken two languages all your life, you might be at reduced risk for dementia," Potter says. "But there isn't much evidence that you get reduced risk if you start after retirement."
Some studies show that physical exercise may prevent dementia in old age, because it seems to increase development of new neurons in the brain. Since physical exercise also has significant benefits for cardiovascular health and weight control, getting up and about on a regular basis might be called a no-brainer both for physical and mental health purposes.
The fact remains, though, that we are a long way from finding either prevention or cure for the nation's most expensive disease. Finding a solution is almost certainly going to require significant sums of federal research funding. Getting that additional funding, in turn, is going to require greater efforts to make Alzheimer's one of the diseases that enjoy political favor, and thus the support of politicians.
One rather surprising figure working hard to put Alzheimer's in the spotlight is Seth Rogen, the 32-year-old star of teen gross-out movies (Knocked Up, Superbad) who took up the cause when he saw his mother-in-law disabled by dementia before she turned 60.
"Americans whisper the word 'Alzheimer's' because their government whispers the word 'Alzheimer's,' " Rogen told a Senate hearing last year. "It needs to be yelled and screamed to the point that it finally gets the attention and the funding it deserves and needs."
T.R. Reid's recent book The Healing of America and his PBS Frontline documentary, Sick Around the World, studied health care systems in industrialized democracies.