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Alzheimer's disease is still ignored. It shouldn't be.

June 26, 2015

    Emily Hatton, Daily Briefing

    In America, someone develops it every 67 seconds. Right now, it affects about 5.3 million U.S. citizens. It's fatal and it cannot be prevented, slowed, or cured.

    So why are people just starting to talk about Alzheimer's disease?

    It affects a massive portion of the population—this year alone the direct cost of care is expected to reach $226 billion—half of which Medicare is responsible for. And that price tag may reach $1.1 trillion by 2050.

    Yet for every $260 in related Medicare and Medicaid expenses, the federal government dedicates just $1 to Alzheimer's research. And most people who have been diagnosed with it were not even told by their physician.

    While it has been the topic of steady pharmaceutical research, the disease only recently became a mainstream topic.

    "Americans whisper the word 'Alzheimer's' because their government whispers the word 'Alzheimer's,' and although a whisper is better than silence ... it's still not enough. It needs to be yelled and screamed," said actor Seth Rogen in a 2014 address to Congress.

    "What I did not realize until I was personally affected was the shame and stigma associated with the disease.  It was before I was born, but I'm told of a time that cancer had a stigma that people were ashamed by ... although it's turning, this is currently where we are largely at with Alzheimer's disease, it seems like," Rogen said.

    But now, celebrities have joined the Alzheimer's Association's awareness campaign, Julienne Moore won an Academy Award for her portrayal of early onset in "Still Alice," Glen Campbell's song about the disease won a Grammy, and a slew of public figures have gone public with their diagnoses. Increasingly, Alzheimer's patients in early stages are advocating for themselves as well.

    "There was this time when you just didn't talk about anything like this," former Rep. Dennis Moore's (D) wife Stephene told the Washington Post.

    In movies, Alzheimer's was relegated to forgetting names and histories—restored by a loved one retelling personal stories. Omitted were the later stages: forgetting how to eat, drink, breathe.

    Today, that seems to be changing. University of Tennessee women's basketball coach Pat Summitt refused to disappear from public life after her announcement. "And that's a huge, important shift in attitude. That alone is going to help so many people," Murali Doraiswamy, a professor at the Duke Center for the Study of Aging and Human Development, told ESPN. 

    Perhaps it's as Joel Rubinoff of the Toronto Star says: Many "cultural heroes" with it have come forward, more young people are being affected, and Baby Boomers are terrified of the disease's "ravaging grip." As more boomers are affected, it may stir up old activist habits, suggests Stephene Moore.

    Whether or not increased conversations and public awareness result in concrete scientific progress remains to be seen. But either way, this month—June happens to be Alzheimer's & Brain Awareness month—the Senate Labor, Health, and Human Services Appropriations Subcommittee approved a 60% increase in Alzheimer's disease research funding, and the House subcommittee approved a more than 50% increase. As part of a $2 billion year-over-year funding increase for the National Institutes of Health, the National Institute on Aging would receive $350 million for such research.

    And, as Rogen noted, simply knowing others are facing the same challenges "would probably make us feel a little less alone."

    On delivering effective Alzheimer's care:

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