Ronald Reagan's openness about his Alzheimer's disease is likely draw new attention to this common problem of aging, as well as diminish the related stigma many patients and their family caregivers experience.
Reagan announced his diagnosis Saturday in an open letter to the public.
"In opening our hearts, we hope this might promote greater awareness of this condition," Reagan said. "Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it."
News of his illness did not surprise friends. It had been rumored for some time. Reagan's doctors reportedly made the diagnosis after changes in behavior observed over the last 12 months. Experts say Reagan's famous memory lapses regarding Iran-Contra were likely not related.
"It's very good they are announcing it," says Lou Cannon, Reagan's biographer. "So many of us have either friends or family who've been touched by Alzheimer's. A president . . . can focus a lot of attention on it like none of us can."
Ironically, speaking out on Alzheimer's is nothing new to Reagan, 83, whose mother died with the disease at age 77.
"We feel a particular kinship to Mr. Reagan," says Edward Truschke, president of the national Alzheimer's Association, Chicago.
"During his administration in 1986 was the first time we were invited to the White House in recognition of `National Alzheimer's Disease Month,' " says Truschke. "Now here it is in November again and Mr. Reagan is announcing his diagnosis. It is courageous on his part for coming forward - for the public awareness it will bring."
Currently, 4 million Americans have Alzheimer's disease and another 20 million family members must care for them. By the time the last of the baby boomers reaches old age in the year 2040, at least 14 million will have the disease and 70 million people will be enlisted in their care.
The progressive disease destroys nerve cells in the brain, causing a steady decline in mental and physical function.
People who live long enough with the disease can lose all ability to feed, clothe and bathe themselves.
Today there's still no cure for Alzheimer's, though 50,000 people are taking a newly approved drug called tacrine. The drug has a limited ability to slow progression or restore function in a limited number of patients when used early in the disease.
The drug helps boost levels of a chemical messenger in the brain called acetylcholine, which aids in memory. Acetylcholine levels are diminished in people with Alzheimer's.
It is not known whether Reagan's condition is suitable for tacrine or whether he will be given an experimental therapy, experts say.
Dr. Richard Hodes, director, National Institute on Aging, Bethesda, Md., says tacrine is the only approved Alzheimer's drug.
All other drug treatments are experimental and available usually through clinical trials conducted at large teaching hospitals. The NIA and the Alzheimer's Association can supply information about how to participate in experimental trials.
Both Hodes and Truschke predict Reagan's effort to increase awareness will succeed. Awareness already created by the Alzheimer's Association, the NIA and other groups has played a major role in speeding the pace of progress toward understanding and someday treating the disease. In 1976, for example, the NIA had less than $1 million a year to spend on studies of the disease.
After the Alzheimer's Association was founded in 1980 and began lobbying for more research money, everything changed. By 1982, the National Institutes of Health was given $20 million a year to spend on Alzheimer's and today spends $310 million. Of that, the NIA spends $213 million. That kind of money has allowed remarkable progress in research in the last several years at the cellular level. Scientists have learned that a protein, beta amyloid, forms on the brain cells of people with Alzheimer's and destroys brain cells. The most recent experiments are reporting on various related substances that can accelerate the formation or even block it.
But, experts say it will still be years before doctors know how to prevent the disease or treat it.
Until then, the greater concern among families is how to care for the family member with the disease.
Reagan, in his open letter to the public, expressed the same concern about family caregiving that's shared by millions of others.
"Unfortunately as Alzheimer's disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience," Reagan said.
Theresa Foster, 34, of Waukegan, Ill., was comforted when she learned of Reagan's statement over the weekend. Her mother was diagnosed with Alzheimer's seven years ago and she and her father have provided care ever since.
"I thought about how wonderful it was of President Reagan to share it with the public," says Foster. "To me it showed he has no shame and that this is all right, it could happen to anyone. I wish I could have wrapped my arms around him and let him know that it's going to be OK."
Foster's mother attends adult day care while Foster and her husband work. They have a full-time, in-home caregiver to help with bathing and care such as changing diapers in the middle of the night. Her condition is common among people in more advanced stages of Alzheimer's.
"My mother is to the point in her disease where she requires full care. She's not able to get up without assistance and she has to be fed, bathed and changed," says Foster. "But through it all she's been very responsive to us. She's a good little girl."
Foster's dad cared for her mother for the first six years, until last spring. Then, the strain took its toll and, after 21 years of sobriety, he began to drink, she says.
"To leave home in the morning and come home in the evening and look across the living room and not be able to communicate, not be able to share with her made him feel all alone in the world," Foster says. "I don't want my dad to be embarrassed about this. I just want people to know how hard it can be."
NIA's Hodes says research is under way relieving stress among caregivers. Such studies offer the most immediate benefit to families.
The Alzheimer's Association also has programs ready to assist. With approximately 220 chapters, the association has support groups nationwide and supplies information on all known aspects of the disease.
Whether Reagan will serve as a spokesperson on Alzheimer's disease remains to be seen. But, people who know the Reagans expect the former president to serve as a willing spokesman for research efforts, such as those funded by the NIA and the Alzheimer's Association.
"It's perfectly in line with everything I know about Ronald Reagan for him to use this and to bring some good out of it," says Sheila Tate, a Washington publicist who served as Nancy Reagan's press secretary.
For more information: The Alzheimer's Association, 800-272-3900, 24 hours a day, 7 days a week.
The National Institute on Aging, 800-438-4380, 8:30 a.m.-5 p.m. ET, Monday through Friday.
Contributing: Jessica Lee and Johanna Neuman
The USA's No. 4 killer Alzheimer's disease, the fourth leading cause of death among adults, leads to about 100,000 deaths annually. It afflicts 2.5 million-4 million Americans, and could rise to 14 million victims in 2040. Like others his age, Ronald Reagan, 83, was at increasing risk of Alzheimer's:
Chances of Alzheimer's
Age 65 6%
Age 75 20%
Age 85 47%
U.S. population over age 64 (In millions)
1970 20
1980 26
1990 32
2000(1) 35
2010(1) 39
1 - Projection
General stages of the disease
1. Disease starts; no symptoms.
2. Forgetfulness.
3. Early confusion. Can't understand news; forgets personal history, finances; denies problem.
4. Late confusion. Can't understand news; forgets personal history, finances; denies problem.
