Part of the Alzheimer’s & Dementia: Personal Stories, Research, Advice Special Report

You’ve been hearing the warnings for years and they’re dire. Without an effective treatment or cure, Alzheimer’s will become so pervasive it will overwhelm the health care system and wreak havoc on the economy. Left unchecked, the footprint of the disease will only expand as the boomers age.

We have the imagery down pat. Just search the words “Alzheimer’s” and “tsunami” and nearly 3,000 news articles appear, describing how Alzheimer’s will wash over the aging population like a tidal wave.

What we don’t have is anything close to the necessary funding to address the looming crisis. And based on the latest projections, we’d better act fast.

MoreTreatment and Maybe a Cure for Alzheimer’s

At the Alzheimer’s Association International Conference in Washington, D.C. in July, a report put it bluntly: more than 28 million boomers will develop Alzheimer’s by mid-century and the cost of caring for them will eat up a quarter of all Medicare spending in 2040.

During the conference, The Atlantic was holding a forum a few blocks away to address what to do about it. “Alzheimer’s is our nation’s costliest disease, about $226 billion,” warned Sen. Susan Collins (R-Maine), chair of the Senate Special Committee on Aging and co-chair of the Alzheimer’s task force. “It’s going to bankrupt Medicare and Medicaid if we do not invest in the research.”

Collins used that word again: “If you look at the tsunami of cases we are going to be facing, we can’t afford not to make this investment.”

Why Is Crisis Response So Slow?

Though the alarm bells have been sounding, no one seems to be responding in proportion to the magnitude of the crisis. The question is why? The reasons may be as complex as the disease itself.

We invest almost $6 billion a year for cancer and $4 billion for heart disease, but only $500 to 600 million in Alzheimer's research.

— Former Surgeon General Dr. David Satcher

Dr. David Satcher, the Surgeon General in the Clinton Administration, hoped the 2009 Alzheimer’s Study Group report he helped write would be the “wake up call.” AMERICA MUST ACT NOW, read the headline. The report compared the coming Alzheimer’s crisis to the prospect of an overwhelming hurricane. What if we’d strengthened the levies around New Orleans, La., before Katrina struck?

Satcher, the founding director of the Health Leadership Institute at the Morehouse School of Medicine, concedes “we haven’t done a good enough job of communicating” the perils of Alzheimer’s. Says Satcher: “While we’ve had a decline in heart disease deaths, stroke deaths and cancer deaths, there has been an almost 70 percent increase in Alzheimer’s deaths in the last 10 years. We invest almost $6 billion a year for cancer and $4 billion for heart disease, but only $500 to 600 million in Alzheimer’s research. I don’t think we’ve had that wake up call.”

Part of the slow response, Satcher says, may be that “as a society we tend to relegate the people who are really old, especially having an illness like Alzheimer’s. We don’t see them as voters.”

But Collins questions that theory, noting that the disease affects “entire families, not just the older victim — the grandchild whose name is no longer remembered, the spouse who may be facing a husband or wife who is yelling at them for the first time and won’t bathe. I think it’s because it was hidden for years.”

Harry Johns, President and CEO of the Alzheimer’s Association, agrees that this disease, like cancer, was once largely hidden. “For many years, people didn’t recognize Alzheimer’s, especially as a disease for the largest population who has it. It was treated as normal aging, treated as senility,” says Johns. Alois Alzheimer discovered what became known as Alzheimer’s disease more than 100 years ago, but the Alzheimer’s Association wasn’t formed until 1980, seven decades later.

Raising Awareness Now

So how best to raise awareness?

Sen. Dick Durbin (D-Ill.), a member of the Senate’s bipartisan task force on Alzheimer’s, told The Atlantic gathering that he recommends taking a page from the late Jack Valenti, the former LBJ aide who headed up the Motion Picture Association of America. “He always put six words in his speeches: ‘Let me tell you a story…’ How many stories do we have in this room?” Durbin asked, knowing he was speaking to a group of motivated caretakers and advocates desperate for a treatment or cure for Alzheimer’s. “Make sure your member of Congress or a trusted aide hears those stories,” Durbin advised.

MoreThe Alzheimer’s Epidemic Hits Women Hardest

Satcher has a story. In addition to his professional work rallying support for Alzheimer’s research, he has had an all too intimate glimpse at the toll the disease takes on families. His wife, Nola, was diagnosed with Alzheimer’s nearly 14 years ago while he was Surgeon General. Today, she requires full-time care and can’t do anything for herself.

“I consider myself fortunate. There are a lot of people who can’t afford the kind of care I can afford. Still, it’s very overwhelming physically and emotionally to watch someone you love disappear in front of your eyes,” Satcher said.

Collins senses Alzheimer’s awareness has reached a new level. Years ago, she says, it was hard to find Senate colleagues willing to be co-chair of the Alzheimer’s Task Force. “Today, people are clamoring to be,” Collins adds.

And there’s also a new dynamic to raise Alzheimer’s profile: the presidential campaign.

“Jeb Bush called me to ask for my support,” she says. “I am endorsing him, but I took the opportunity to talk with him about Alzheimer’s. And just a few weeks later, he spoke publicly about his mother-in-law’s battle with Alzheimer’s and the need for more federal investment. See, it works.”

Collins puts a lot of stock in celebrities telling their story or a family member’s personal experience with Alzheimer’s. Glen Campbell has testified before Congress, as has former restauranteur B. Smith, who was diagnosed with early-onset Alzheimer’s a year ago and is featured in a public service announcement encouraging African-Americans to participate in clinical trials.

Seth Rogen and Maria Shriver have also been very active because of family members with Alzheimer’s. And the recently crowned Miss USA Olivia Jordan helped raise $1.3 million for Alzheimer’s research at one event.

But some wish the politician with the biggest megaphone would do for Alzheimer’s what President John Kennedy did for space when he promised and succeeded in getting a man to the moon and back or what President Richard Nixon did when he declared war on cancer.

“I can’t speak for why President Obama hasn’t stepped up the way I think it could have been done,” says Johns. But this administration has taken some steps, including reprogramming $50 million to Alzheimer’s a few years ago.

In May of 2014, Republican presidential hopeful Mike Huckabee channeled President Kennedy’s “moon shot” promise to the nation and vowed to focus on a cure for Alzheimer’s, saying: “America can do anything it sets its mind to.”

That was followed by Democratic presidential candidate Jim Webb’s tweet: “We need to find a cure for Alzheimer’s. I know we can solve this problem.”

By Richard Harris Richard Harris is a freelance writer, consultant to the nonprofit iCivics and former senior producer of ABC News NIGHTLINE with Ted Koppel. Follow him on Twitter @redsox54

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