Thief of Time
By Lisa Ellis
InteliHealth Staff Writer
For years, they had lived with fame, power and wealth. Then came Alzheimer's disease.
Thus, the family of former President Ronald Reagan became, in many ways, just another family coping with a disease that steals even the grandest of memories. Reagan, 93, died June 5, 2004, nearly 10 years after his diagnosis with the disease.
But the Reagans also did what others could not do. By acknowledging the illness, as they previously had done with the president's prostate, colon and skin cancers and Nancy Reagan's breast cancer, they helped countless others to see and to accept Alzheimer's disease in their own families.
"I think the impact has been immense," said Bill Thies, Ph.D., a pharmacologist who is vice president for medical and scientific affairs at The Alzheimer's Association in Chicago. "There is no doubt that the dialogue about Alzheimer's in the community got a huge move forward from Reagan's courageous announcement [in 1994] that he had the disease."
In their own writings, Reagan family members also revealed glimpses of experiences that would resonate with others touched by Alzheimer's disease, a form of dementia that gradually destroys memory and other intellectual functions but leaves sensation and movement intact.
A memory lapse
For Maureen Reagan, the journey began in late 1993 with her first "click of awareness" that something had gone awry in her father's mind, she wrote in a January 2000 essay for Newsweek magazine. Maureen Reagan died in August 2001 of malignant melanoma.
She and her father, former President Ronald Reagan, were talking about one of his movies, the 1954 drama Prisoner of War.
"For years he had told me about the gruesome tortures inflicted on American prisoners by the North Koreans," she wrote. "But now he seemed to be hearing me tell the stories for the first time. Finally he looked at me and said, 'Mermie, I have no recollection of making that movie.' "
"No actor ever forgets a role," she wrote, "so I should have realized something was wrong."
A few months later, she wrote, her father complained to his doctor about feeling disoriented in hotel rooms. In August 1994, he was diagnosed with Alzheimer's, and on Nov. 5 of that year he released a brief statement about his illness, in hopes of promoting "greater awareness of this condition."
Although the early symptoms of Alzheimer's vary, Thies said, what Maureen Reagan described is a common pattern: "not remembering things that had a relatively high profile in your life, and certainly disorientation in strange places."
Alzheimer's, which appears most often in people older than 60, begins with disruptions in the paths of communication among brain cells. These disruptions are related to deposits of a protein called amyloid and to a reduction in the levels of acetylcholine, a substance that aids in the passing of messages between cells. Eventually, cells in some parts of the brain shrink and die.
Sometimes, Thies said, it can be difficult for family members to notice that a gradual change is occurring or to realize that the change matters.
"Typically the first thing people will notice is that an individual begins to have difficulty finding the right words," he said. We all have that problem occasionally, he said, "but as you see it with increasing frequency, it becomes a sign."
Memory loss might not mean losing car keys but instead forgetting how to drive a car. "Someone may lose their interest in something they used to spend a lot of time on because they don't remember how they did that before for instance, an accountant who is having difficulty balancing their checkbook," Thies said.
People also may give less attention to maintaining cleanliness, changing clothes, preparing food and performing other aspects of the daily routine, he said.
Surprise and denial
In Ronald Reagan's case, the person who knew him best, his wife Nancy, initially saw "no signs" of illness, as she wrote in her 2000 book, I Love You, Ronnie, a collection of Reagan's love letters to her. When his Alzheimer's was diagnosed, she wrote, "I was dumbfounded."
Family members often are surprised by an Alzheimer's diagnosis, Thies said.
"The No. 1 reason for lack of recognition is denial: 'Oh, this isn't different; Uncle Joe always had a bad memory.' As long as the issues are relatively subtle and they cause minimal dislocation, it's easy enough to attach these sorts of incidents to something other than a disease process. And, certainly, the fact that the symptoms of Alzheimer's are highly variable from day to day also makes a difference."
Still, there is good reason to look for the warning signs of Alzheimer's and to seek care, Thies said. Although Alzheimer's has no cure, some medicines approved in recent years can relieve some symptoms. These drugs, known as cholinesterase inhibitors, increase the levels of acetylcholine and thus help communication among brain cells. Eventually, as brain cells die, the drugs no longer help, Thies said.
A newer drug called memantine (Namenda) has been shown to stabilize memory in people with moderate to severe Alzheimer's disease. It is the first in a new class of medications called NMDA receptor antagonists.
Certain psychotherapeutic techniques known as reality orientation and memory retraining also can be helpful, Thies said.
New research focuses on whether other substances including vitamin E, nonsteroidal anti-inflammatory drugs, estrogen and the herb gingko biloba might slow the progression of Alzheimer's, Thies said. Other human trials are aimed at treatments to decrease accumulation of amyloid protein in the brain, he said.
Still, with the best of care now available, Alzheimer's is a progressive disease that at some point interferes with everyday activities such as dressing, eating and bathing.
Behavior and stress
Along the way, behavioral problems also may occur, Thies said. "Sometimes it gives rise to sort of a paranoiac reaction where they [patients] talk about someone stealing things from their house. Well, they just can't find them [the missing items]. They can occasionally strike out at someone because they don't recognize them; they feel threatened."
As the demands of caring for the person with Alzheimer's become more intense, the caregiver may need considerable support. Nancy Reagan, though she had a nurse to help care for her husband, still said she treasured the encouragement she received from friends and from thousands of people who sent encouraging letters.
"I can't begin to say how much this means to me and how helpful it is," she wrote in I Love You, Ronnie. "First of all, there is a feeling of loneliness when you're in this situation. Not that your friends aren't supportive of you; they are. But no one can really know what it's like unless they've traveled this path and there are many right now traveling the same path I am. You know that it's a progressive disease and that there's no place to go but down, no light at the end of the tunnel. You get tired and frustrated, because you have no control and you feel helpless."
Help is available
Thies said it is important for people dealing with Alzheimer's in the family to realize that help may be available and seek out that help. Resources may range from actual services such as respite care to the emotional support of those who have had similar experiences. He urged people to contact local chapters of The Alzheimer's Association and state or local departments of health or aging for information.
Awareness, he said, continues to be the greatest barrier to people who need help with Alzheimer's in the family. But he gave great credit to the Reagan family for bringing into the open a disease that often has been hidden, for starting a research institute in cooperation with The Alzheimer's Association and for stirring interest that has led to a large increase in federal funding for research.
In the last few years, Nancy Reagan also has worked for increased funding of stem-cell research, a potential path to other treatments for Alzheimer's.
Ronald Reagan "is someone whose memory was going to be that of a great man and will continue to be," Thies said. "It took great courage to stand up and say, 'I've got this disease.' "
Last updated February 03, 2010
Thief of Time
Alzheimer's disease is a thief of time, and it is no respecter of power, position or privilege. Here's what we can learn from the experience of Ronald Reagan and his family.