A vibrant mind fades into 'sunset'
Reagan becomes the face of Alzheimer's sufferers
By Catherine Saillant
Scripps Howard News Service
A memorable moment: The former president and Mrs. Reagan made their first appearance after announcing he had Alzheimer's disease at his presidential library in Simi Valley, Calif., in November, 1994. After that, he often paid unannounced visits to the library to talk with children and thank library volunteers.
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It used to be called senility. Nancy Reagan referred to it as that "cruel disease." But when former President Ronald Reagan told the nation in 1994 that he was in the early stages of Alzheimer's disease, he gently alluded to "the journey." "I now begin the journey that will lead me into the sunset of my life," said Reagan in the Nov. 4, 1994, handwritten letter to the public.
It was a lyrical and forthright admission about a disease that ravages the mind so relentlessly that patients in later stages are unable to talk or dress themselves.Reagan's willingness to go public with his condition changed the way Americans think about Alzheimer's disease and the 4 million individuals and their families who must deal with it on a daily basis, advocates say.
His letter did "enormous good" for the families of Alzheimer's sufferers, according to Elizabeth Wilson of the Alzheimer's Association, a national support and research organization based in Chicago.Wilson said the public dialogue about the disease and its impact on families took away some of the stigma. It showed the disease can affect anyone - even a president.
The Alzheimer's Association and its 200 U.S. chapters were inundated for months with calls for information.
A year later, the Reagans announced the creation of the Alzheimer's Association Ronald and Nancy Reagan Research Institute, whose goals include finding ways to delay onset of symptoms by five years. That would reduce by half the number of people afflicted, she said, and save U.S. families $50 billion in care-related costs.
There is still much to be learned about Alzheimer's. First described by Dr. Alois Alzheimer in 1906, it did not get much attention for decades. But with people living longer today, there are more people in the over-65 population most at-risk of showing symptoms.
A degenerative disease of the brain, it initially causes a person to forget recent events or familiar tasks. In later stages, it causes confusion, personality and behavior changes and impaired judgment.
Eventually, most patients must rely on family members or costly professional caregivers to help them perform such daily tasks as eating, bathing and dressing. Most are unable to hold a conversation.
Friends who know both Reagans say it broke their hearts to see the man known as "the Great Communicator" lose his ability to reel off long colorful anecdotes and jokes. In its place was a blank expression, friends reportedly said.
Despite increased emphasis on research, there is no cure. Drugs rivastigmine (Exelon), donepezil and tacrine may temporarily relieve some symptoms of the disease and have been approved by the Food and Drug Administration.
At least two dozen other promising drugs are now being developed and some may be available within the next few years, and the American Academy of Neurology last year issued new practice guidelines to promote early recognition and diagnosis.
Scientists also are trying to find the biological and chemical markers for the disease so it can be detected early.
There is strong evidence that the brain degeneration associated with Alzheimer's disease may begin up to 40 years before the first symptoms appear, Alzheimer's Association officials say, although questions of genetic testing for a disease for which there is currently no cure raise ethical questions for doctor and patient alike.
Reagan reportedly began exhibiting bouts of bewilderment and forgetfulness two years before he was diagnosed. It is clear from his letter that he was aware of the trials ahead for himself and, especially, his beloved wife, Nancy.
"I only wish there was some way I could spare Nancy from this painful experience," he wrote in his familiar scrawl. "When the time comes, I am confident that with your help she will face it with faith and courage."
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