Reagan and Alzheimer's Disease

Reagan and Alzheimer's

Former president Ronald Reagan, 93, died at his home in California on Saturday. After leaving office, he announced his condition of Alzheimer's disease in a letter expressing his gratitude of service to the American people. About five million Americans are afflicted with the disease and there is no known cure.

David Shenk, author of "The Forgetting: Alzheimer's - Portrait of an Epidemic," was online Monday, June 7 at 2 p.m. ET to talk about the disease that President Reagan battled for the last 10 years of his life.

Shenk was previously online to discuss the PBS documentary, 'The Forgetting': A Portrait of Alzheimer's,' based on his book. Prior to 'The Forgetting,' Shenk wrote 'Data Smog' and has also written for Harper's, Wired, Salon, The New Republic, The Washington Post and The New Yorker and is an occasional commentator for NPR's All Things Considered.

Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.

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David Shenk: Hello. Thanks to washingtonpost.com for having me back on this sad occasion. As the author of the The Forgetting, I've obviously been following Reagan's illness very closely. Sad to say, he seem to have a classic experience with the disease, experiencing annoying but minor memory issues in the late 80s and early 90s, and then having more and more trouble with memoory and disorientation as the years went on. He was diagnosed in 1994, and did the whole world an enormous service by going public with his diagnosis. There are two monumental challenges in the Alzheimer's world right now: to cure it of course, and also to help the public understand it so we can break through the taboo and improve care. Nancy and Ronald Reagan faced squarely up to both challenges, and we owe them both a lot for that.

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Arlington, Va.: How is Alzheimer's Disease different from the "ordinary" (but sometimes severe) dementia that often occurs in old age?

David Shenk: Great question. In today's terminology, we no longer consider any dementia as ordinary. Dementia is the general category, and we know that dementia is always caused by a particular disease. Alzheimer's happens to be by far the leading cause of dementia.

But there is no such thing as "garden-variety dementia." It's always caused by something, and it's important to diagnose what's causing it.

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Wallace, N.C.: Do you think that Ronald Reagan had Alzheimer's during his term as president?

David Shenk: Everyone wants to know that about Reagan, understandably. The short answer is no -- he did not have diagnosable Alzheimer's in the White House.

Alzheimer's is a progressive disease that creeps up very very slowly, and it was certainly creeping up on him during the late years of his Presidency. He knew that better than anyone, and joked frequently in speeches and with his White House doctors. But it's clear from looking at the evidence that his memory troubles in the White House were much too slight to be considered Alzheimer's.

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Mt. Lebanon, Pa.: For those of us not keeping up with this field, what's the quick and dirty on where the progress stands on combating this condition? Who are the major players? Any hopeful signs in the near term? Are the research bucks devoted keeping up with the need and importance of delivering relief from this dreaded enemy?

Thanks much. HLB

David Shenk: Thank you for asking that. We are nearing a crisis point in this country, and it is utterly urgent that we devote more national resources to stopping this disease before the baby boomers get to the vulnerable years. Roughly 1% of 65 year olds have Alzheimer's or a related dementia. 10% of 75 year olds. 20% of 85 year olds. Aging is the biggest risk factor by far, and everyone knows the numbers of elderly are about to skyrocket.

There is an enormous scientific effort to understand and combat the disease, and I expect that there will be some very significant breakthroughs over the next handful of years. But we're very frankly not giving Alzheimer's the money it needs and deserves.

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Arlington, Va: I'm confused about the overlap, if any, between Parkinson's and Alzheimers, as medications, such as Aricept, for Alzheimers is being given for Parkinson's. Are they the same or do they come from the same place in the brain? Can you actually have both?

David Shenk: It is confusing. They are totally distinct diseases, but do very often overlap for reasons not entirely understood. I could get into medical detail about what Aricept does, but I think this isn't the place for it.

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Charlottesville, Va.: Greetings,

I am an acoustic musician who performs regularly for Alzheimer's and other dementia patients in area senior living facilities. Folk/rock type music - some of my favorites and original songs with some oldies and gospel tunes thrown in.

I also founded SongSharing (website at .org), an organization that coordinates and encourages musical volunteerism among our many local musicians. We have begun the process of incorporating & applying for non-profit status, which will allow us to greatly expand our services.

Any suggestions for the performers, or for how to focus a program that would be particularly beneficial to this group of individuals?

Thanks,

Greg

David Shenk: God bless you. We need so many more people like you who can tailor their work and humanity to this enormous need. I think you probably know the field better than I do -- you know, for example, that Alzheimer's patients really do respond to the warmth of music. Even in the advanced stages of the disease, music -- along with human touch -- can do wonders for their spirits.

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Washington, DC: This question sounds naive, but I don't know the answer. Do people actually die _from_ Alzeihmer's, or is it a secondary problem that causes death?

David Shenk: Thanks for asking that. I spend my career asking naive questions -- that's the only way to actually learn stuff.

Alzheimer's IS a fatal disease. It starts out as an annoying memory disabler, and then, as the plaques and tangles migrate to various areas of the brain, it slowly squelches every other brain function. At the very end -- 8-10 years, on average -- it actually picks apart the neurons that control breathing, heart rate, etc. Your body literally forgets how to breathe, how to live.

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David Shenk: I should add that it's also very common for people to die of related -- or unrelated -- conditions along the way. Reagan is reported to have died from pneumonia, which is quite common.

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Arlington, Va.: I was hoping that Nancy Reagan's plea for more stem cell research would be heeded by the people who proudly claim to be Reagan supporters. Is there any indication that there will be a ground swell to make stem cell research a priority, something that I think would be better than putting Reagan on the dime?

David Shenk: I think you're about to see that groundswell. This is just part of Nancy's importance to the cause.

It's also important for people to know that MOST important Alzheimer's research is not really connected to stem cell research. It's a lot less controversial, but no less important.

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Anonymous: Charlton Heston got Alzheimer's and it seemed like a rapid initial decline for him from news footage I've seen. Is the progression sometimes faster?

David Shenk: Progression does vary -- and of course people can diagnosed in different stages. Some people these days are getting diagnosed at the very earliest stages. It used to be that diagnoses were rare until people were well into the middle stages of the disease.

People can progress from diagnosis to death in just a few years. It's more common for it to be 8-10 years, but not uncommon for people to have the disease for 15, even 20 years.

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Vienna, Va.: Upon learning his condition, were the former President and Nancy very active in finding funding for research and hoping to find a cure during his lifetime?

David Shenk: Very active. They've steered a lot of money and attention the Alzheimer's Association, a terrific organization.

I need to correct the second part of your question: I don't think they had any real hope of stopping the Reagan's disease. They were doing it for the cause, for future generations.

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San Francisco, Calif.: I was in college during the Reagan years and I remember how anxious many people were about nuclear arms and his proposed Star Wars initiative. I also remember how Saturday Night Live played up his absent mindedness and naivity. Could we have been seeing symptoms of Alzheimer's that were masked by his facility as an actor and communicator? What are the early signs that someone may have this condition and to what extent do Alzheimer's suffer from psychosis or reconstruct personal history in order to "fill in the blanks" or mask their absent mindedness?

David Shenk: This is a very difficult question to answer -- you need to read a whole book to get into these nuances! But generally speaking, there's no connection between absent-mindedness and Alzheimer's. Reagan did have family experience with senile dementia, and was aware of that, and joked about getting it himself. But a spotty memory is not really a predictor of the disease.

Reagan has also been ridiculed for his supposed lack of intelligence. From what I know, he was actually a very smart person. But in any case, people need to know that intelligence is no real predictor for the disease. Noble laureates have gotten the disease. I've personally talked to scores of caregivers who are just shocked that their brilliant father or mother ended up with Alzheimer's, of all things.

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It is good to emphasize that, David. The major networks were not helping in this respect by announcing that "President Reagan had finally lost the battle with Alzheimers disease." And words along these lines.

I don't think anybody can "lose the battle with Alzheimer's disease." Is that correct?

David Shenk: I'm sorry, but I need to disagree with your statement as I understand it. The media characterization that Reagan lost his battle with Alzheimer's is basically correct. He was in the final stages of the disease, and thus was susceptable to things like pneumonia.

In fact, *everyone* loses their battle with Alzheimer's. It's unwinable right now. Alzheimer's is a fatal disease.

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Washington, D.C.: Where is a good place to get information about Alzheimer's? Also, does this disease affect minorities differently or in greater numbers?

David Shenk: You can start at theforgetting.com, a website I set up. I would also recommend the Alzheimer's Association, online at alz.org, and also present in virtually every city in the country.

Generally speaking, the only serious risk factor of Alzheimer's is age. Any ethnic group, city, state, nation is vulnerable precisely to the extent that they have a large aging population.

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Mechanicsville, Md.: My mother has started to be very forgetful - Forgetting entire days activities, but at other times, she is clear as a bell. Is this the beginning of Alzheimer's? Her doctor said she has "Mild Dementia", but we can call it beginning Alzheimer's if we want. Mom will not submit to an MRI. I think she may know what's happening because when she forgets something important, she gets agitated and says things like " I know it didn't happen, I have my right mind". Any suggestions to help me with her care?

PRL

David Shenk: To be frank, a doctor should be clearer about whether the disease is Alzheimer's or not. It's very important to get an accurate diagnosis, to know which disease you are dealing with.

My one suggestion for is to learn more about what you have, and read about how that disease unfolds. Do as much as you can to prepare for future problems. Set up as much care infrastructure as you can, and make sure you take care of yourself!

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Ft. Washington, Md.: Is there a national support group for those who care for dementia sufferers?

Thank you so much.

David Shenk: Get in touch with your local Alzheimer's Association chapter. Also, there's a fantastic online support group which you can find in the resources section of theforgetting.com.

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Silver Spring, Md.: My Grandfather suffers from Alzheimers and since his diagnosis I have coem to realize that my grandmother is one of the most gracious, patient, caring, and wonderful people in the world. I don't think there are enough words to descibe women like her and Nancy Reagan are. I hope that someday we can find a cure for this disease and that maybe in Mr. Reagans passing, some good can come out of it, with increased donations to Alzheimers research.
Lee

David Shenk: Amen to that. Caregivers are heroes, one and all. I am absolutely blown away by how generous, and eloquent, they can be. Most people really rise to the occasion -- one of the many heartwarming lessons I've pulled out of this dreadful disease.

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Arlington, Va.: What do you mean by the disease was "creeping up on him during the late years of his Presidency"?

David Shenk: Alzheimer's doesn't just start one day. The plagues and tangles that destroy brain cells actually can start accruing in someone's brain as early as their 20s or 30s, and it can take decades for them to build up a critical mass where they are doing recognizable damage. We call that an "insidious" disease. It creeps up very very slowly.

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Patuxent River, Md.: If there is a suspicion of Alzheimer's Disease, which type of doctor should you see to get the diagnosis? Is a neurologist the best?

David Shenk: A neurologist can be a great way to start, but so can a family practitioner if they're up to speed on the disease. There are memory clinics that may not even have doctors but which could tell you if you've got the type of memory issues that would prompt further testing. It's not the type of doctor so much as the quality that matters. A lot of them, sadly, are not fully kept up with the Alzheimer's literature.

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Bethesda, Md.: In your research, did you run into any of those caring for the former President or had communicated with him or his wife about Alzheimer's in any capacity?

David Shenk: I personally was not in contact with Reagan's caregivers, no. I did follow the comments of family members and friends who came into contact with him at various stages. He obviously got top-top notch care, from Nancy on down. And he was obviously in a position to afford the very best care. In that sense, he's a rare case. Alzheimer's is incredibly expensive -- mostly because of the caregiving needs and the job and life sacrifices that various family members have to make. Decent nursing home care is ridiculously expensive. I don't know how we're going to solve that one.

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Washington, D.C.: My father has Alzheimer's. After having heart bypass surger a few months ago his memory worsened significantly, and he has had seizures and balance problems. Do you have any idea what might help or why this occurred? Have any "alternative therapies" such as accupuncture been helpful in slowing the progression of the disease?

Thanks

David Shenk: Sorry to hear that. The connection between his surgery and the increase in memory troubles is probably related to his own lack of energy. It could be that people are just noticing it more. Surgery itself does not speed up the disease process, as far we know.

It's always good to explore alternative therapies, but DO NOT listen to hucksters who claim to have anything that slows down or "reverses" the disease. Such treatments do not yet exist, and its very very depressing to see desperate people falling under such cons.

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Annapolis, Md.: I lost my own mother to early-onset Alzheimer's - died at age 55, 3 years after her diagnosis. Truly a devastating disease and I commend Nancy for her devotion to President Regan. My father took care of my mother at home and it was the most heart-breaking yet wonderful thing that I ever witnessed as a daughter.

With regard to research, are we at a stage where you could be tested to see if you are at risk for the disease?

David Shenk: There aren't any really useful tests yet. A few rare families in the world actually carry an Alzheimer's gene, and they know who they are. They can be tested and be told for sure whether or not they will get the disease. The rest of us get "sporadic" Alzheimer's.

There will be tests in the coming years that help identify the disease in the very earliest stages. But we're not quite there.

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Sterling, Va.: Do you think President Reagan suffered from this during his second term?

David Shenk: No -- I went into this in some detail earlier. And I write about it a lot in my book. But the short answer is no. I don't think he had Alzheimer's in office -- as much as some would like to believe that he did.

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Fairfax, Va.: How do you allay a 78-year-old woman's fear that she's becoming forgetful and might be getting Alzheimer's?

David Shenk: Some fear is very healthy. The odds are frankly not great once you get to that age. But you can take her to a doctor and he can test her memory and tell her very directly whether there's any real cause for concern.

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Philadelphia, Pa.: A few of my oler relatives have (or had) Alzheimer's and I'm wondering if there is anything I can do now (I'm 30) to strengthen my brain against getting this terrible and heartbreaking disease - for example, I have heard that vitamin E suppliments are sometimes recommended. Is there research being conducted to find helpful preventative action?

Thanks.

David Shenk: Is there research being conducted -- only to the tune of billions of dollars every year. Every drug company in the world wants to come up with the preventative pill for Alzheimer's. Still, we need to put a lot more federal money into basic research of the disease.

The brain-strengthening issue is nuanced. Yes, you should definitely excercise your mind as much as possible, and stay active and socially and emotionally connected to others as you get older. But none of that guarantees you won't get Alzheimer's. They think that maybe an active intellectual life can push off onset of the disease by a few years.

Vitamin E certainly won't hurt, in low doses (it can be dangerous in high doses). But there's no real evidence that in low doses it will do a lot of good.

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Buenos Aires, Argentina: How close are we to finding a cure to this terrible disease? Is any medication available now that can arrest the progresive nature of Alzheimer?s?

David Shenk: We don't know how close we are. They have learned a lot about the disease in the last ten years, and there are very exciting drugs in testing. But we don't know if that means 5 years, 10 years, or 25 years.

There are medications now that can help somewhat with the symptoms of the disease. They DO NOT, however, actually slow down the disease. The disease marches on, sad to say.

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Washington, DC: You wrote: "annoying but minor memory issues in the late 80s and early 90s"

Do you have facts to corroborate that assertion, or are you just relying on the popular stereotype?

David Shenk: I have facts. I looked at every scrap of data available to the public on this question, and I work very hard to characterize things as fairly as I can. I spent several years writing a book on the subject, nothing in which has been challenged by any scientist or caregiver.

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Kingston, Jamaica: How do you know it's Alzheimer's, rather than other forms of dementia? And does this specific a diagnosis make a difference anyway?

David Shenk: The specific diagnosis is important. It was actually technically impossible to know with 100% certitude that Reagan had Alzheimer' while he was alive -- because that would require a brain biopsy. But the medical community has developed very precise tests that can rule out other things and rule in Alzheimer's to a greater than 90% certainty.

It's important to know which disease it is because different diseases:
- are treated differently.
- progress differently.

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Washington, D.C.: Did the former president and first lady ever meet with other patients of Alzheimer's? Did they ever go before Congress to get more money into funding research?

David Shenk: The Reagans -- kids included -- have done a tremendous amount to raise funding levels.

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Manassas, Va.: My mother was diagnosed with alzheimer's about 4 years ago and currently takes aricept and paxil (for depression). How long does the aricept actually work for?

David Shenk: From what I know, Aricept tends to be effective (in some people, not all) for a couple of years. Then the effectiveness seems to go away

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Patuxent River, Md.: Are there any "casual" tests that I can perform on my mother to see if my suspicions are correct?
TL

David Shenk: You can get ahold of an MMSE, a mini-mental state examination test. If you can casually administer that, you would have a pretty good idea about whether you need to look further.

Another thing is to take her to the doctor and alert the doctor in advance that you'd like him or her to casually explore the possibility. Many doctors can accomplish this with elegance.

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Catonsville, Md.: I just finished a college course on Aging, and was taught that the only definitive diagnosis for Alzheimer's is an autopsy.

My question is out of concern for the lay folks who pre-judge the vast spectrum of early dementia and may put their loved one in an "untreatable" category out of ignorance.

Before jumping to conclusions, what should loved ones do to assist someone suffering from apparent mental decline DO to assist with a proper diagnosis? For example, some bad medication mixes can look like dementia. I'm not a doctor. Just want folks to be careful...

David Shenk: Yes, that is all true. I just spoke to that earlier but am happy to repeat. People should not assume. They should go to a doctor who is up to speed the various forms of dementia.

There are some rare treatable, even reversible, forms of dementia. Alzheimer's is not one of them, yet. But people do need to know exactly what they're dealing with before they start medicating.

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Alexandria, Va.: Mr. Shenk,

Thank you for answering my question. I have a grandmother who died five years after being being diagnosed with alzheimers and when she died it was almost as if her brain forgot to tell her heart to beat. Could this have been the case and are there various degrees of alzheimer as Mr Reagan struggled with it for five years longer then my grandmother?

Thank You

David Shenk: That is very much what happens. The plaques and tangles migrate throughout the brain over years and years, and eventually wreak havoc on the part of the brain that regulates breathing, swallowing and the heart.

The length of time from diagnosis to death can vary tremendously -- as short as a few years to as long as 15-20 years.

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Owings, Md.: In President Reagan's speech to the country saying good-bye, he says a short line at the end and the applause starts just before it. What does he say? I cannot make it out. He truly was a great President and Nancy has surely shown how to stand by our men and our families.

Thanks. Betty

washingtonpost.com: According to the Post's Lou Cannon's article "He announced his condition Nov. 5, 1994, in a poignant letter to the American people in which he thanked them "for giving me the great honor of allowing me to serve as your president." (Post, June 6)

David Shenk: One more thing -- I thought that this link had been posted earlier, so just to clarify: Reagan was diagnosed with Alzheimer's in 1994, and, as stated below, he announced that in a letter to the nation. To my knowledge, he never spoke again publicly about the disease. Nancy became the spokesperson from then on.

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David Shenk: Thank you all for the terrific questions. Sorry I didn't have time to answer them all. I humbly submit that you might some more answers in my book. If you do get a chance to read it, please get in touch and tell me your thoughts. I can be reached at dshenk@yahoo.com, or through my website at davidshenk.com.

My heart goes out to the Reagans -- and to every family suffering from this cruel disease. Let's help break through the taboo, so people can understand it better. And let's use the occasion of Reagan's death an excuse to put more resources into the critical war against this disease.

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