Stealing Minds: Alzheimer’s and Reagan
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TERENCE SMITH: Five years after Ronald Reagan left the White House, he told the nation in a letter that he had been diagnosed with Alzheimer’s Disease. He wrote: “I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead.” Throughout his illness, the Reagan family sought to maintain privacy about details of the president’s condition. Still in an interview last winter with KCTS-TV, the president’s son, Ron Reagan, discussed the pain of Alzheimer’s.
RON REAGAN: Well, the terrible thing about Alzheimer’s is, of course, is it robs the victim of the memories, the tapestry of memories and recollections that constitute the self in so many ways, and not only does the victim lose their own sense of self and their sense of place within their sort of social continuum and the family but the people around them, the loved ones, begin to question whether this is the same person we always knew.
TERENCE SMITH: Nancy Reagan also has worked long and hard to maintain the president’s privacy as well. But last month, the former first lady spoke publicly about his decline, and advocated broader use of stem cell research to treat Alzheimer’s and other diseases.
NANCY REAGAN: Ronnie’s long journey has finally taken him to a distant place where I can no longer reach him. I think that’s probably the hardest part. Those with Alzheimer’s are on a rocky path that only goes downhill. Because of this I’m determined to do what I can to save other families from this pain.
TERENCE SMITH: More now about Alzheimer’s Disease and the efforts to treat it. It comes from Dr. Ron Petersen, director of the Alzheimer’s Research Center at the Mayo Clinic. Dr. Petersen first diagnosed President Reagan’s illness and is on the medical and scientific advisory council of the Alzheimer’s Association. Dr. Peterson, welcome. Tell us what was the reaction of the former president and first lady when you gave them that diagnosis?
DR. RON PETERSEN: Well, when we had the initial discussion regarding the diagnosis, I talked to Mrs. Reagan and I talked to the president and both of them together. I think they took it in a matter-of-fact type of manner in which they’ve dealt with many challenges in their life. I think while this is an important and devastating type of news for them, I think they took it in a sense that, well, this is the next challenge, the next hurdle in our lives. Let’s go forward from here.
TERENCE SMITH: So that was a positive attitude at least at the beginning.
DR. RON PETERSEN: I think so.
TERENCE SMITH: The president lived ten years after that diagnosis. Is that typical? Long, short?
DR. RON PETERSEN: Well, the range at which people live with Alzheimer’s Disease is very variable. In general we talk about an eight-year ballpark figure, but it could be as few as a couple of years in more aggressive forms of the disease. On occasion we get people who will actually last 15 to 20 years. So at his age, ten years was quite significant in terms of his length of survival but not particularly unusual.
TERENCE SMITH: And the cause of death was not Alzheimer’s per se.
DR. RON PETERSEN: Well, it gets into a semantic discussion as to what actually is the terminal event. Most people with Alzheimer’s Disease as it advances will die of pneumonia or some type of medical complication of the disease.
TERENCE SMITH: Which is what the family is announcing.
DR. RON PETERSEN: Exactly. That’s a common. Or an infection of one type or another, a blood infection something of that nature.
TERENCE SMITH: How has this disease changed or how have we begun to learn more about it in these ten years since he was originally diagnosed?
DR. RON PETERSEN: Well it’s been an important ten years in the field of Alzheimer’s Disease research. If you look back at where we were in 1994 and where we are today, there are dramatic changes. With regard to understanding the disease itself, I think we have more knowledge about the basic underlying fundamental process, protein called amyloid that’s deposited in the brain.
We know how that’s processed. What the abnormal processing is and what happens in the brain when in fact it is deposited. We still have a challenge in terms of how do we stop that and how do we modify that? That’s where research is heading. And the clinical side or the patient-oriented side of research, we’ve now moved the diagnostic threshold, so to speak, or we now pick up the disease much earlier in people who are a little bit forgetful and so we’re able to identify the earliest signs of Alzheimer’s Disease I think more sensitively than we could in 1994.
TERENCE SMITH: Earlier in their lives or earlier in the process of the disease or both?
DR. RON PETERSEN: Probably a little bit of both. I think certainly in the disease process itself. We now have been able to recognize people at a stage that we call mild cognitive impairment. This is even before people achieve the diagnosis of Alzheimer’s Disease, so to speak. That is with mild cognitive impairment, people have a memory impairment that is new, that is significant. It’s beyond the normal forgetfulness of aging. But otherwise their activities of daily living are preserved. They look pretty normal to most people but those individuals who know those people well — they’ll say they’re more forgetful than they used to be.
TERENCE SMITH: What’s the normal trajectory of this disease in terms of intensification?
DR. RON PETERSEN: In general the disease follows an individual course for each patient. But in general one can characterize it perhaps as the mild cognitive impairment stage where there’s just the forgetfulness. Then you get into clinical Alzheimer’s Disease where you make the diagnosis. Now it’s achieved the criteria for Alzheimer’s Disease.
We talk about mild, moderate and severe stages. Mild, people do have trouble with thinking, memory is impaired — may have a little trouble with word finding but generally they’re functioning pretty well — may even be able to handle some of their own affairs fairly well. As you get into the moderate stages, now people need supervision. They need help with their finances; maybe some of their activities are more impaired and they need some supervision. As you get into the severe stages, of course, then people may need institutionalization, help with daily activities, bathing, grooming, dressing and ultimately in the end stage may become bedridden.
TERENCE SMITH: Alzheimer’s as a disease was identified nearly 100 years ago. And yet you say it’s the last 10, 20 years in which there have been, first of all, so much attention and the advances you were speaking of before. Why? Why the acceleration?
DR. RON PETERSEN: That’s correct. The original description of Alzheimer’s Disease as we’ve come to know it was made in 1907 by Alzheimer himself. In fact, it has existed in the literature. It’s gone through some changes in terms of where do we draw the age boundaries as to what is Alzheimer’s Disease and what’s not. But in the last ten years, 10 to 15 years certainly it’s received much more attention partly because as society is aging, in particular as the baby boomers are aging into the period of at risk for Alzheimer’s Disease, this is becoming of significant important such that if we as a society are unable to do something about this disease in terms of slowing down the progress or preventing it, it’s going to have a major impact on the health care system in the very near future.
TERENCE SMITH: Are their medications that help with that, slowing down that process?
DR. RON PETERSEN: Certainly. As you were saying, ten years ago when the president was diagnosed, we had maybe one medicine that was on the horizon that was being looked at but since then we’ve had the luxury, so to speak, of having three or four medications that we use now quite commonly. There are two classes of medications.
The one set of medications represented by Araset, Epsilon and Reminil are all of the same class, they’re called colonase inhibitors. They work on the symptoms of the disease but probably don’t get at the underlying process yet. There’s been a new medicine that was just approved this year actually and is on the market called Nementine or Nemenda… and this has a different mechanism of action from the other three but again is still thought to be largely symptomatic treatment rather than the underlying disease process.
TERENCE SMITH: Nancy Reagan has spoken out for more research into stem cells and the possibilities there are. I wonder quite apart from the ideological debate and other debates about stem cell research, is there universal agreement that it even applies or would be applicable to Alzheimer’s?
DR. RON PETERSEN: I think it’s an interesting possibility. Certainly any type of therapy that could replace the brain cells that are degenerating as part of the disease process would be very exciting. The Alzheimer’s Association has supported that type of an approach. However, there are significant challenges that remain. It’s not a single cell type in the brain that dies in Alzheimer’s Disease. It’s more complex than that so while it still remains an interesting prospect for research, it certainly is not there at this point in time.
TERENCE SMITH: Dr. Ron Peterson, thanks so much for explaining it to us.
DR. RON PETERSEN: Thanks, Terry.