Huffpost Fifty
The Blog

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors

Lou-Ellen Barkan  Headshot

The Unexpected Face of Alzheimer's

Posted: Updated:
ALZHEIMERS
Ursula Markus via Getty Images

With the successful conclusion of the Alzheimer's Association International Conference in Copenhagen on July 23, there is increased scrutiny on this killer disease now affecting more than five million Americans and more than a quarter million people in the Big Apple, where I lead the Alzheimer's Association, New York City Chapter. But behind every Alzheimer's statistic is a life -- a family, a community -- forever changed by this devastating disease. So let's take a look at some of the faces behind the facts and figures.

Fact: Every 67 seconds, an American is diagnosed with Alzheimer's disease. A startling fact for sure, but not all the faces behind this number are what you'd expect. Alzheimer's is not a normal part of aging. More than 200,000 Americans with Alzheimer's are under the age of 65. These are people who until recently were enjoying successful professional and personal lives. They were driving their kids to soccer practice; owning restaurants; volunteering at the local food bank; and balancing their checkbooks. And every 67 seconds, one of their lives dramatically changed with an Alzheimer's diagnosis.

Fact: More than 60% of dementia caregivers are women. My parents retired to Florida in 1984. But when my father's dementia was diagnosed, it quickly became clear that their retirement plan had not anticipated a long-term chronic illness. Within a few years, he required 24-hour care. To preserve their limited financial resources, Mom initially struggled to care for him alone and, like so many women of her generation, she became a caregiver and suffered physically, emotionally and financially.

Fact: Almost 66% of Americans with Alzheimer's are women. Nine years after my father died, I admitted my 88-year-old mother to assisted living. She was recovering from chemotherapy and exhibiting signs of dementia. After two months of community living, Mom, who never held a paying job, had abandoned her identity as a Jewish housewife and re-invented herself as a Protestant attorney with a second career as a big band vocalist. Like other children of Alzheimer's, I was at first shocked, but then I delighted in her new story. The independent, energetic and creative woman I called "Mom" was still there.

Fact: Alzheimer's is the sixth leading cause of death in the U.S., but experts say it could be as high as number three! There are a number of factors behind the discrepancy of this disturbing statistic, but one contributing factor remains the shame associated with dementia. Every day, I meet families who are embarrassed by an Alzheimer's diagnosis. Let's be clear: Alzheimer's is a fatal, untreatable physical illness, no different than cancer or ALS. But, even after a death, many families are ashamed to admit their relative had Alzheimer's.

Fact: Total funding allocated by the NIH for HIV/AIDS research dwarfed the funding for Alzheimer's in 2013 (almost $2.9 billion vs. $503 million), yet almost five times as many Americans today are living with Alzheimer's than HIV (1.1 million). In my mind's eye, I see the faces of hundreds of bright, eager scientists who are interested in neurological illness and are committed to developing effective therapies for Alzheimer's. But without adequate funding, this army of brilliant minds will walk away from their groundbreaking work to focus on better-funded areas of research. It's a tragedy in the making.

Fact: Within 30 years as many as 16 million Americans will have Alzheimer's. To see the face of someone affected by Alzheimer's, all we have to do is look in the mirror. Statistically, if we live long enough, many of us will develop the disease and all of us will be affected in some way -- either personally, in our role as caregivers or by the enormous strain it will put on the American healthcare system.

In the end, facts and figures do matter. Numbers compel politicians to action. Numbers drive research dollars and resources for care. But it is the face of Alzheimer's that will forge change. The more active our community becomes, the more visible we are and the stronger our voice, the harder it will be for elected officials, policy makers, corporate America and the voters to ignore us.