Tulsa World: Let's get serious about funding Alzheimer's research

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Let's get serious about funding Alzheimer's research
Let's get serious about funding Alzheimer's research

Jackie and Marvine Harrell observe their 50th wedding anniversary, as well as Marvine's 72nd birthday in 2008 as seen in "The Alzheimer's Project: Caregivers" on HBO. KATJA HEINEMANN

By JULIE DELCOUR Associate Editor
Published: 5/24/2009 2:30 AM
Last Modified: 5/24/2009 4:47 AM

It was an odd but touching gesture.

I had laid my purse and a rose from my aunt's funeral on the ground so that I might help my 94-year-old uncle out of the hearse. Uncle Charley pointed his cane at the ground. Apparently he was reminding me not to forget the items — this from a man who forgets almost everything, including, sometimes, the name of his daughter who lives one floor below him.

Back home he stared at a big-screen television, intently watching a baseball game, oblivious to everyone around him. We all wondered if he truly understood that his wife of 57 years was not coming back. He had sat dry-eyed at her funeral, lost in his thoughts or his grief. His face was unreadable. "Oh, he understands," my cousin reassured us. "He asked me about 'Mama,'" his nickname for my aunt.

When I sat down beside him that afternoon, he looked into my face and asked who I was although he had known me for nearly six decades. Trying to engage him, I asked if he remembered our family doctor and his best friend. Suddenly animated, my uncle chatted about Doc DeWitt, who has been dead for more than 40 years. And then my uncle grew pensive. "But that was a long time ago," he said, abruptly ending our talk and turning back to his baseball. The moment of lucidity, surely a small triumph for him, was gone.

This man who had played minor league baseball and worn Joe DiMaggio's hand-me-down uniform; this man who had built a successful five-state whiskey barrel stave business, keeping most of his vast inventory in his head, had retreated back into his shell. He often sleeps 18 hours a day.

My uncle suffers from Alzheimer's, a degenerative, always-fatal brain disease. He has lived with it at least a decade, perhaps longer but he covered well. He now requires around-the-clock care. He is among 5.3 million Americans, most of them elderly, whose affliction steals its victims' memories, then their dignity and, at some point, their lives. Alzheimer's disease is now the sixth leading cause of death for people in the United States, and the fifth leading cause of death for those 65 and older. I also understand what my cousin faces. She is among the 10 million Americans providing 8.5 billion hours of care to family members with Alzheimer's. Were they paid, they would earn $94 billion.

Direct and indirect costs of Alzheimer's and other dementias total more than $148 billion annually.

And yet federal funding for Alzheimer's research has remained flat, about $650 million a year for the past five years. This is a shameful and inequitable state of affairs considering this incurable disease claimed 400,000 lives last year.

In 2000, 62,000 Oklahomans suffered from Alzheimer's. By 2025 that number is expected to grow to 96,000. Last year, 113,475 Oklahoma family caregivers contributed 98 million hours in unpaid care annually to loved ones.

On the national front, experts predict that as the Baby Boom generation ages, the number of cases diagnosed each year will increase to half a million by 2010 and almost a million by 2050.

Recently former House Speaker Newt Gingrich and former Sen. Bob Kerrey from the congressionally authorized Alzheimer's Study Group, testified that it is fiscally responsible to spend money now to find a cure because it will save money in the long run. They called for a national strategy to combat a crisis that deepens by the day.

California first lady Maria Shriver, whose father suffers from the disease, hosted an HBO documentary series on Alzheimer's. "It is the most expensive disease in existence, it lasts the longest, it takes down the entire family — not only the person who has the disease," she said. "We've got to do something."

To put the enormity of the problem into perspective consider that someone in the U.S. develops Alzheimer's every 70 seconds; by mid-century it will be every 33 seconds.

My unsettling meeting with my uncle occurred shortly before the entire world went crazy over a rare strain of swine flu. The U.S., state and local governments and the nation's public health agencies mobilized for a pandemic that thankfully did not come to pass.

Alzheimer's already has reached epidemic levels. But its funding trails that of most other diseases. Recently, U.S. Reps. John Sullivan, R-Okla., and Dan Boren, D-Okla., wrote letters to a congressional appropriations committee urging an immediate $250 million infusion of research funding at the National Institutes for Health. That is a good start but at least $1 billion in sustained funding is needed.

For victims of this fearsome disease there is no way up and no way out. The fact that there is no cure makes funding for Alzheimer's research more urgent. When compared to other diseases, spending does not reflect the enormous threat that this disease poses to the nation's health and welfare. Unless the course of the disease is substantially altered, Alzheimer's will represent a $20 trillion liability to the government over the next four decades. If ever a "stimulus package" were needed it is now, for more Alzheimer's research.

Julie DelCour, 581-8379
julie.delcour@tulsaworld.com By JULIE DELCOUR Associate Editor

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	Report Comment Loki, Broken Arrow (5/24/2009 7:05:45 PM) Well-crafted, Julie. The boomer demographic is hurtling towards this abyss. It will affect their families. It will affect government. It will affect health care. "Kicking this problem down the road" is a formula for pain and suffering for all concerned. What percentage of the cost of the Bush war of choice could have been used to address this problem? An average cost of $10 billion a month could have been spent wiser elsewhere. Elections DO have consequences.
	Report Comment J C OK, Tulsa County (5/24/2009 7:24:43 PM) JULIE, GREAT ARTICLE. Unless one has witnessed this several times, it doesn't quite sink in. One of the finest OB/GYN and one of my favorite Pediatricians in Utica Square Medical Center had this awful illness. My brother-in-law was just put into aasisted living. My sister developed senility due to mini strokes and it was similar to the confusion these guys experience. IT IS SOMETHING THAT NEEDS OUR HELP. My neice had no life for several years.
	Report Comment human1, Cast you fate to the wind (5/25/2009 2:19:35 AM) This was a great article. Alzheimer org has a wonderful site with some of the most detailed information of what we currently know about brain function. This would not have been possible without research funding. Many other illnesses such as Bipolar and Schizophrenia,and Autism would also benefit from the brain research. It is time to understand the brain has chemicals, and neuroreceptors which affect behavior. You can't tell a person in the later stages of this disease to "act responsible" and expect them to choose to change their behavior! The Pet Scan has done wonders in helping with this research. This illness is disheartening to watch.
	Report Comment oprah44, Independence (5/26/2009 6:31:36 PM) It's a sad state of affairs when a loved one gets dementia. We just cannot fund EVERY malady as if we could prevent ageing and dying. We can learn to live with the process of ageing and dying but we just can't avoid it, regardless of how much money we throw at it. Dementia has been a part of the ageing process, well, forever, and I don't think our endless pursuit of a perfect life can justify the billions of dollars some want to get access to. Sorry, no sale on this one. I'd rather fund research on childhood diseases to give someone a long life, not just extend an existence.
	Report Comment human1, Cast you fate to the wind (5/27/2009 9:31:52 PM) oprah44..."dementia has been a part of the aging process forever" From the Alzheimer Association MYTH # 1: Memory loss is a natural part of aging. Reality: In the past people believed memory loss was a normal part of aging, often regarding even Alzheimer’s as natural age-related decline. Experts now recognize severe memory loss as a symptom of serious illness. Certain Type of Dementia can begin as early as 30. Alzheimer's KILL's! It destroys brain cells and causes memory changes, erratic behaviors and loss of body functions. Alzheimer's can strike people in their 30s, 40s and even 50s. This is called younger-onset Alzheimer's. In 2009, it is estimated that there are as many as 5.3 million people living with Alzheimer’s disease in the United States. The research into Brain Function and abnormalities is often useful in other diseases which may affect children. It is not about extended living. It is about quality living, and if you can even eat.

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