O'Connor, Gingrich, Satcher Discuss Alzheimer's
ALISON STEWART, host:
This is TALK OF THE NATION from NPR News. Im Alison Stewart. Neal Conan is away. One-hundred-and-three years ago, a German doctor by the name of Alzheimers first reported a debilitating affliction that affected brain function.
Today we know the discovery is a degenerative and deadly disease that robs people of their memories, their personalities, their independence, and ultimately, their life.
Many people have committed themselves to fighting Alzheimers, but there is no cure. Earlier today, members of the congressionally established Alzheimers Study Group testified on Capitol Hill before the Senate Special Committee on Aging.
Among those appearing, Justice Sandra Day OConnor, a member of the study group. She shared some startling statistics.
Justice SANDRA DAY OCONNOR (Former Justice, United States Supreme Court): The Alzheimers Disease is the sixth leading cause of death, and today in this country, more than five million Americans have the disease, and our study shows that in the next 20 years, the numbers of people with Alzheimers will increase more than 50 percent.
And without some basic action in this country, ultimately one in two people over 80 are going to have this disease, and thats too many.
STEWART: Justice OConnor will join us in just a moment. Well also hear from two other members of the Alzheimers Study Group, former Speaker of the House Newt Gingrich and former Surgeon General Dr.�David Satcher.
Now, the study group issued a report, out today, that paints a picture of a gathering storm that Alzheimer's will soon overwhelm our health-care system as baby-boomers age, and the group offered its plan to prevent and possibly someday cure the disease.
We do also want to hear from you. If someone in your family has Alzheimer's, how do you cope? What would make life easier? Please tell us your story. Our number here in Washington is 1-800-989-8255. The e-mail address is firstname.lastname@example.org. You can always join the conversation at our Web site by going to npr.org and click on TALK OF THE NATION.
Sandra Day OConnor was an associate justice on the United States Supreme Court from 1981 until 2006. She is now the chancellor of the College of William and Mary, and as I mentioned, a member of the Alzheimer's Study Group. She joins us here in Studio three.
Justice OConnor, thank you so much for your time today. We really appreciate it.
Justice OCONNOR: Thanks for making time for it.
STEWART: When you announced your intention to resign from the Court in the summer of 05.
Justice OCONNOR: Retire, not resign.
STEWART: Retire, thank you. You were candid, and you told Americans that your husband is one of the some-5.3-million people who suffer from this disease. First of all, how is his health, and whats involved in his care today?
Justice OCONNOR: Like all people with Alzheimer's, he has deteriorated. Its a downhill slide, and theres really no interruption in the process. What has changed with him is that he no longer understands what it is he has and that he has a disease. He is just existing, and hes, frankly, reasonably content with his current situation, for which Im very grateful. And I think its about all I can hope for at this point.
STEWART: If I can take you back, when did you and your husband first realize that he might have Alzheimer's?
Justice OCONNOR: My husband was a wonderful entertainer. He loved to tell funny stories and jokes. And when he stopped remembering the punch line, he thought maybe something was wrong, and so did I. And sure enough it was.
STEWART: At the time, once he was diagnosed, did you realize what was ahead of you in terms of care?
Justice OCONNOR: No, no because we had not been affected by anyone close to us with Alzheimer's, and I didnt understand at all, the dimensions of the problem or how it would unfold.
And we had to learn all that, John and I together, and it wasnt good news.
STEWART: So it was very surprising to you, it sounds like.
Justice OCONNOR: Well, I had no concept of how it unfolded and what the prognosis was and what the potential treatments were.
STEWART: Your testimony and the report from the group talks quite a bit about how difficult this disease is for the caretakers who are so clearly involved in this.
As someone who was a caregiver for many years, what did you learn about the disease that someone who might read a report or hear a news story wouldnt really understand?
Justice OCONNOR: Well, it is progressive, and someone who is truly afflicted with Alzheimer's need somebody with them all the time. There occasionally gaps of as long as an hour after my husband was brought home from a daycare facility for people with Alzheimer's before I could get home.
And during that hour, he started wandering. We had moved to an apartment building, and then he would leave the apartment and wander around. And that was very frightening for me, and Im sure it was for him, too, when he realized he didnt know where he belonged or how to get back.
So I think its like caring for a small child, and you cant leave them unattended. Thats what it boils down to.
STEWART: You mentioned there was that hour before you could get home.
Justice OCONNOR: For a while.
STEWART: Was it difficult to balance work and this part of your life?
Justice OCONNOR: Well of course. It is for anyone, very hard, because he really had to have constant care and someone with him.
STEWART: It seems that everyone knows someone, a family member, a person in your neighborhood. I remember Mr.�Altamorando(ph) down the street from me, who was a former police officer, and I watched him slowly deteriorate.
Why do you think this issue hasnt been more of a priority when so many of us have personal stories and know someone?
Justice OCONNOR: Well, its something that grew over time in the first place. We live longer today than we used to, as a people. And its people, generally speaking, in their late 70s or 80s that start developing the disease.
It isnt limited to that. It can start earlier, but primarily its that. Now we have people living longer, and the number of Alzheimer's cases has greatly expanded. And if it continues at the present rate, one in two people over 80 are going to have this before you know it.
STEWART: Why did you want to take part in this study group? There are many ways that you could have become an advocate about this, but this particular group?
Justice OCONNOR: Well, because we all anyone whos connected with it wants to know what can we do about it? How can we help? Whats the future? What corrective action is possibly there?
And like others who are affected by Alzheimer's and by being, having someone in the family whos so affected, we want to know what can be done.
STEWART: Id like to take a call from a young woman named Bridget in Denver. Hi, Bridget. I understand that this is a personal you have a personal story you can share with us.
BRIDGET (Caller): Yes. Im actually on my way I pulled over. I couldnt believe this report was on. Im on my way to pick up my mother and father to get my mom checked out for Alzheimer's. And I actually feel relieved and excited, if thats the right word, to finally be doing this because weve been seeing symptoms for years, and its been hard to get my father on board with this - to admit it.
STEWART: Do you mind sharing what some of the symptoms were that youve seen with your mom?
BRIDGET: The short-term memory loss is the most obvious one to people that dont know her very well. Shell say, wheres dad? Oh, he just went to the store. And then 10 minutes later, wheres your father? Well, he just went to the store. Its literally that immediate.
STEWART: Are you in a situation where youre prepared, where you could be a caregiver for your mom if?
BRIDGET: I hope so. I live an hour away, but Im prepared to do whatever I need to do. Ive been scheduling meetings. My brother flies in from Virginia. We schedule meetings at the Alzheimer's Association to get my father information. But right now, the hardest part is my mom doesnt want to talk about it, and my father doesnt want to upset her by talking about it.
STEWART: Bridget from Denver, thank you so much for being so candid. Does that ring true, what Bridget said, that moment of I dont really want to believe this, Justice OConnor?
Justice OCONNOR: Well, the caregiver, the person not afflicted of course doesnt want to believe it. And the person whos told they have it, if theyre still reasonably intact, they dont want to hear it, either.
And what is it that I have, and what did you say it is? And why me? Why me? Why do I have this? That was the reaction I got from my husband.
STEWART: And what about your children?
Justice OCONNOR: Well, they didnt know what to think because they had not looked into it at all. And it wasnt until they started finding out about Alzheimer's and what it meant that their concern mounted. Initially, they didnt know that much about it.
STEWART: What do you hope someone takes away from this study group report, and were going to discuss it in depth throughout the hour, but just the overall goal?
Justice OCONNOR: I hope that people who listen realize what a massive problem it is in terms of numbers in this country, and how many people over 80, and some much younger than that, are going to be afflicted with this disease; and to learn what the hope is for trying to solve it, because we need everyone in this country to get on board in trying to solve the problem, by supporting the research that it takes to find something that will stop it; and in supporting government action to do that research; and indeed encouraging Congress to properly fund the research; and to set up an agency within our government that can focus on this disease.
STEWART: Alright, were going to break that down, as well as invite in some of the other study group members in just a moment. Were speaking with Justice Sandra Day OConnor.
Were talking about the devastating effects of Alzheimer's, some of the personal stories. Were also going to talk about some policy initiatives, perhaps even some solutions, some proposals, to prevent and treat the disease.
Newt Gingrich, a co-chair of the Alzheimer's Study Group, will join us next. We do also want to take your calls. Please ring us at 800-989-8255. You can also email us. Thats email@example.com. Im Alison Stewart. This is a special edition of TALK OF THE NATION from NPR News. Stay with us.
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STEWART: This is TALK OF THE NATION. Im Alison Stewart. Some five-million people suffer from Alzheimer's disease in the United States, and that number is expected to grow. While deaths from diseases like heart disease and stroke dropped in 2000 and 2006, Alzheimer's death jumped 47 percent by one count.
What to do about that was one of the questions facing a congressionally appointed panel. The Alzheimer's Study Group released its report today, and members of the Senate Special Committee on Aging heard testimony on Capitol Hill.
Maria Shriver, the first lady of California, spoke to the committee. Her father, Sargent Shriver, suffers from the disease, and she told the committee that when a person gets Alzheimer's, it can and often does devastate families.
Mr.�MARIA SHRIVER (California First Lady): I know that many people look at Alzheimer's families from the outside. They see dependent, childlike parents now cared for by their offspring or their loved ones, and it seems so often that the roles are simply reversed. Thats not so.
The truth is no matter what our age, we all feel like children. No matter who you are, what youve accomplished, what your financial situation is, when you are dealing with a parent with Alzheimer's, you, yourself, feel helpless.
The parent cant work, they cant live alone and is totally dependent, like a toddler. As the disease unfolds, you have no idea what to expect.
STEWART: That was Maria Shriver, the first lady of California, addressing the Senate Special Committee on Aging earlier today.
Weve been speaking with Justice Sandra Day OConnor, a member of the Alzheimer's Study Group. Were going to bring in a few more voices now. First, co-chair of the study group, former Speaker of the House Newt Gingrich, here with us in Studio 3A. Thanks for being with us.
Former Representative NEWT GINGRICH (Republican, Georgia): Its good to be with you.
STEWART: I do want to give out the phone number before we have our conversation for folks who are listening in who have a story to tell or just perhaps have questions.
If someone in your family has Alzheimer's disease, how do you cope? What would make life easier? Please tell us your story. The number is 1-800-989-8255. Our e-mail address is firstname.lastname@example.org.
And Mr.�Gingrich, when I told friends about I was working today, and I was going to interview Newt Gingrich about Alzheimer's, I said I really had no idea that he was part of patient advocacy. Im not sure its the first thing people put together when they hear your name.
Would you explain to people why youre involved in this and whats your personal connection?
Former Rep. GINGRICH: Well, Ive had a very long interest in health as a general issue, and I have helped found the Center for Health Transformation, which works on looking at a variety of key issues.
In the case of Alzheimer's, it partly grew out of work that Senator Bob Kerrey and I did on quality, long-term care, which was a three-year commission we co-chaired, and the more we worked on it, and the more we looked at long-term care facilities, the more we realized that Alzheimer's is the central driver of long-term care for the next generation.
And that is an extraordinary problem. I had first encountered it at the First Baptist Church in Carlton, Georgia, when I was a very young college teacher, and they asked me to teach the oldest mens course.
And you gradually began to realize that some of the members of that class went from being totally alert and totally engaged to gradually declining, and that was back in the 1970s.
My sister-in-law today has a mother who has Alzheimer's and whos going the process, and of course with Nancy Reagan and President Reagan, we went through that experience, and I would talk on occasion with Nancy during that long process.
I was attracted to do this particular project because George Vradenburg of the Vradenburg Foundation, whos a real leader in this area, and Harry Johns, whos the head of the Alzheimer's Association, came to us at the Center for Health Transformation and said they thought that the breakthroughs in brain science were sufficient that this could be one of those moments when the right panel of experts working together could come up with a strategy that would make a profound difference.
And with the help of people like Dr.�David Satcher and Justice Sandra Day OConnor, I think that we actually have a report that is very significant and that lays out a series of goals that could have a profound impact on Alzheimer's over the next decade.
STEWART: And we do want to mention that Dr.�Satcher is joining us in the studio, as well.
One thing about the report, and its the very first paragraph you read, describes the Alzheimer's crisis - a slow-building crisis, analogous to the weakened levees in New Orleans or with the sub-prime mortgage crisis.
What is unique, sir, about the way that this is progressing?
Former Rep. GINGRICH: Well, I think there are two things here that come together to make it different than almost any other disease. The first is that when you have Alzheimer's, it is normally a fairly long process, and you end up in total dependency.
And so it becomes a very demanding process for your family and a very expensive process for the country. The second is the sheer scale of it. Just a couple quick facts.
Every 70 seconds, someone in America develops Alzheimer's. By the year 2050, thatll be every 33 seconds. There are 5.3-million Americans currently suffering from Alzheimer's, one in eight Americans over 65, almost one in two over 85.
Ten-million baby-boomers will develop the disease. Its a family disease. There are 9,900,000 caregivers, and they provide, such as the young lady who called in a while ago, they provide 94-billion hours of uncompensated care every year.
I mean, if we tried to pay for 94-billion hours of uncompensated care, by itself it would be like passing a new stimulus bill every six months. Thats how big the amount of money would be.
Just one or two other quick things because I think our audience needs to understand the scale of this.
Between now and 2050, the current estimate is that Medicare and Medicaid will pay $19,890,000,000,000 for Alzheimer's. And to give you a sense of hope, if we could get just a five-year delay in the onset of Alzheimer's over that same period, it would save $8,530,000,000,000.
So when people talk to you about the entitlement problem, they talk to you about the out-year budget problem, finding a fundamental breakthrough in Alzheimer's is one of the most powerful things you could do for the human beings directly involved, for their families, and for the taxpayers, all three simultaneously.
STEWART: Lets get to someone whos going through this right now. Bernie(ph) is calling us from Teaneck, New Jersey. Hi, Bernie.
BERNIE (Caller): Hello. Ms.�OConnor, I cant tell you how much I miss your voice on the Supreme Court, and I know your personal story. You have my sympathy.
Im not married today in large part because of Alzheimer's. My wifes mother had Alzheimer's, and the way I put it is my wife gave all of her love to her mother. Therefore, I had to give all of my love to our children. Therefore, there was no love left for us.
I cant I dont think there is any financial solution. It emotionally disrupted my wifes family with her siblings because no one agrees whats the best thing to be done.
You cant expect all the siblings to leave their jobs, to move from wherever they live. And in my own family, they sort of believe that there should be a pill, sort of a Kevorkian solution, because no amount of care as you just said, theres no amount of money that will fix the problem. Maybe youll find a cure someday, but in the meantime, its a family destroyer.
Justice OCONNOR: It is of course. For many families it is; not perhaps for every family. But for some it is, and the point of our report is in part that we can find something to delay the onset or to cure the disease. And I think thats within our grasp within the next, certainly 20 years, anyway, to do, if we mobilize the scientists who are working in the area and if we develop some financing to coordinate that research. And if we can require the sharing of data at the critical times, I think we can solve it. And its worth trying to do that, I think.
STEWART: Bernie, thank you so much for sharing your story. I do want to follow up Bernies call with an email we got. It says, should we be designing support for Alzheimers patients caretakers so that family members, as well as, quote, outside attendants, can be compensators for the hours they are contributing? We understand something like the equivalent of 100 billion is already being toted up each year for in-home support services. Would it help if family members had a piece of that budget? What do you think, Mr. Gingrich?
Mr. GINGRICH: I think it one of the things we talked about a great deal was fundamentally shifting resources towards families. One of the proposals which was made by Senator Susan Collins was to have a tax credit, for example, for families. We also talked about a fundamental change in the payment system. The current fee for service system, when youre dealing with a chronic condition which you know will go on for years, may, in fact, be a destructive model.
And we had very, very good testimony this morning about alternative models of paying for care that created a continuum of care on a value-based payment system, and that was one of our strongest recommendations to the senators, to look at rethinking how we pay for taking care of people who have a long-term condition.
STEWART: I want to bring Dr. David Satcher into our conversation. He is also a member of the study group, former surgeon general, thank you very much for joining us as well.
Dr. DAVID SATCHER (Former Surgeon General): Delighted.
STEWART: I want to bring you in because we have a young woman on line five from Jacksonville, Florida. I want to step off from the group report a little bit who has a question. Devana(ph)?
DEVANA (Caller): Yes.
STEWART: Go ahead and ask your question.
DEVANA: Youre ready for my comment now?
STEWART: Absolutely, please.
DEVANA: My father is 82 and hes been diagnosed with Alzheimers for about five years now. And I would say hes probably nearing the end of the beginning of Alzheimers. I had I have been troubled with aphasia for, oh, probably five years. And although my doctorate is in statistics, Ive nearly lost the ability to do math. Im forced to use the calculators to do any kind of math.
And so, I decided to go to a cognitive psychologist and have myself evaluated to see if I had Alzheimers, because I know it runs in families. And when I did, they felt like that perhaps I was showing was, in fact, more related to lupus, which I have, than Alzheimers. But they warned me that studies seem to show that people who are my age, Im 58, who show short-term memory problems like Im having and some long-term memory problems like Im having, seem to be more prominent to Alzheimers in later age. Id like to hear comments from your speaker. And Ill take my their comments off the air.
STEWART: Devana, good luck to you. Dr. Satcher, when you heard Devana tell her story, does she have need for concern in terms of genetics?
Dr. SATCHER: Well, I think she has need for concern that she has a problem. And I think she needs to be evaluated individually. And its not, certainly not the kind of thing you want to try to diagnose on the phone. But clearly, if a person has problems with their memory, short-term and long-term, and theyre getting worst, there could be other explanations. It doesnt have to Alzheimers.
But clearly, if you have a family member who has Alzheimers, you are at greater risk, but at what age? If her father is in 80s and is just getting it, its not the typical kind of gene-associated Alzheimers that we see. But we do see a greater predisposition for Alzheimers in persons who are in families where there has been that diagnosis.
But I would encourage her to continue to get evaluated individually and certainly to thoroughly evaluate the lupus problem, which can be a very serious problem, too. But I wouldnt make the diagnosis of Alzheimers this soon. There are a lot of causes of short-term memory loss.
STEWART: Were speaking with Newt Gingrich, Justice Sandra Day OConnor and Dr. David Satcher. This is TALK OF THE NATION from NPR News.
Dr. Satcher, we heard why Justice OConnor and Mr. Gingrich decided to get involved with this particular project. Why did you?
Dr. SATCHER: Well, I guess there are about three different reasons. Let me go at it this way. As you know, I was director of the CDC, and we implemented mental health programs there for the first time. And then as a surgeon general, had the opportunity to release the first ever surgeon generals report on mental health. And that all happened before I actually had a more personal experience with Alzheimers.
My mother-in-law has been in an institution for several years with Alzheimers. And I think because of that, when my wife started having difficulties with her memory, we were probably more on top of it, so it was diagnosed much earlier than usual. She was in her 60s, so its been a prolonged course. So I guess you could say that Im dealing with Alzheimers both as a professional on the one hand, but also as a person, and as a spouse and as a family member where this disease has been an issue.
STEWART: As a professional, what do you feel needs to be done? And then someone whos dealing with it on a personal level, what do you think needs to be done?
Dr. SATCHER: Well, I am very pleased with the report of the Alzheimers Study Group. I think if this report is followed, we stand a very good chance of getting on top of this disease and significantly delaying the onset of Alzheimers disease, saving a lot of money. As youve heard, we expect the cost of this disease, which is now already $250 billion a year, to increase by more than $20 billion by 2050 and to cost $1 trillion a year - so, just looking at it from the standpoint of our health system.
But let me say something else and maybe a point that we havent made well enough, and that is if we, in fact, fix our health system to deal with the needs of patients and families with Alzheimers, we will have a better health system to deal with all of our health problems, especially our chronic diseases. We are not doing a good job now in dealing with chronic diseases in our health system. Chronic diseases are responsible for 75 to 80 percent of the cost, and yet we dont have a coordinated system.
We underutilized the electronic health record. Medicine is perhaps behind a lot of other fields when it comes to the use of the electronic health record. So we can follow the recommendations of the study group and make the changes and demonstrate the impact of those changes for the problem of Alzheimers. We will be making a tremendous contribution to the future of health care in this country.
STEWART: I dont want to get to more of those recommendations, but I want to bring in Janette(ph) from Norfolk, Illinois. Hi, Janette.
JANETTE (Caller): Hello.
STEWART: I understand youre taking care of your mom.
JANETTE: Yes. My mom took care of her mother, ironically, who had what was probably Alzheimers 40 years ago, and now Im doing the same thing. Im 40 years old. I was a late-in-life child. My mom was a brilliant woman. And about five years ago, as a bookkeeper, she was no longer able to keep her books, pay her bills. Some of the family was in denial. I was, to some extent. But I moved home, some thousand, few thousand miles and took care of her for three and a half years.
Some of my family was too far away to help. One brother said, I cant deal with this, see you at the funeral. I didnt know what I was getting into, but I knew I didnt want to have any regrets. So I came home, and I gave up some of my hours on jobs and stuff so that I could be there. But one of the things I want to let the other caregivers know that you have to take care of yourself because even doing everything I could to try to keep - take care of her, it was taking too much of a toll on me.
I was becoming just so stressed. I became depressed and anxious. You wouldnt sleep very well. If you hear them get up, youre, like, okay, did they get back to bed, okay? And a lot of people dont understand. I had a boss ask me if I was if I had a learning disability because I couldnt focus, I couldnt concentrate.
Sounds like it was a tremendously difficult time. Janette, thank you so much for sharing your story. Were talking with members of the Alzheimers Study Group about solutions raised in their final report. Well get to that just very shortly. Justice Sandra Day OConnor, former speaker of the House Newt Gingrich, as well as Dr. David Satcher are joining us in studio.
Im Alison Stewart. Its TALK OF THE NATION from NPR News.
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STEWART: But right now our focus in this hour is on Alzheimers disease - its effect on patients, families and the health care system, and the strategies presented today by the Alzheimers Study Group to fight and prevent the disease. If youd like to join the conversation, please do call us at 1-800-989-8255. Our email address is email@example.com. Or you can go to our Web site, npr.org and click on TALK OF THE NATION.
Sandra Day OConnor is with us. Justice OConnor, member of the study group, as well as Newt Gingrich. He served as speaker of the House and co-chaired the study group. And Dr. David Satcher, he was surgeon general from the U.S. from 1998 till 2002. Thank you all for staying with us for the whole hour.
Mr. Gingrich, the report has you said actually, this morning you had a little sense of optimism. There are solutions in this report. Weve been talking about some of the devastating numbers, but lets talk about some of the solutions. Sixteen points were made. Could you highlight one or two that you think are really important for people to know?
Mr. GINGRICH: Well, let me say, first of all, that its very telling when you talk with people who are directly, personally involved with Alzheimers, that they put the emphasis on research in getting a breakthrough because the most devastating aspect of the disease is the hopelessness and the sense that its an inevitable decline. And as somebody said today, its sort of a one-way train, unlike, say, having cancer, where you have a chance to become a survivor and what have you.
I would say we have three large propositions and that they require having an office to coordinate them in a public-private partnership, as Justice OConnor pointed out in her testimony this morning. The first proposition is that we change the payment pattern so that we recognize this is a long-term condition, and we pay for value for the total experience. We dont pay on a transactional basis. And we have a number of models that help you do that. But its a huge change from the current model of Medicare and Medicaid.
The second big breakthrough is to work with the Food and Drug Administration to rethink the entire process of how they approach preventive conditions and testing preventive conditions. Because in the current setting, since their first rule is do no harm, its very difficult to figure out how you run a trial that involves people who currently have no particular conditions.
And so, it would somebody has told us, for example, itd be very hard today to check out the statins that are common because 25 years ago we had a different risk profile. But we actually want to be able to deal with you before you start having damage from Alzheimers, and that requires working with the Food and Drug Administration to rethink their approach to brain science.
The third and probably, at least in my opinion, the biggest and boldest proposal weve made is to recognize that we have a commitment of a minimum of $20 trillion already on the table through 2050. And ask yourself, what would the value be of the research that allowed you to save a fourth or a half of that - a fourth would be $5 trillion, half would be $10 trillion? Itd be more than the total national debt today.
And our proposition is that we rewrite the budget act to take this kind of science out from under the annual budgeting. And instead of saying how much how many pennies can be put together this year and right now its about 400 million a year, which is pathetic compared to the cost of it, which is above $100 billion a year for Medicare and Medicaid - what if we said to the scientific community, tell us the optimum you could spend on a five-year cycle.
So you could begin thinking about graduate students, you could begin thinking about real infrastructure and do it the way we did it with the Human Genome Project, which was originally a 15-year project, came in - 12 years - came in 300 million under budget as Dr. Satcher points out. But nonetheless, its a directed project model rather than an individual grant peer review model.
And ask the scientific community to come back with an honest commitment of the maximum rate at which they could undertake investigations on multiple parallel fronts to get to the breakthrough. We have three Nobel Prize winners and over 125 neuroscientists who signed onto our report and said they believe we could get to the breakthrough by 2020. If that happened - and by breakthrough they mean stopping all future Alzheimers if that were happen by 2020, the out-year savings would probably be on the order of $8 to $10 trillion.
And so you have to ask yourself, what would you invest today if you thought the payout was going to be $8 to $10 trillion? You would invest it very differently than what were doing right now. Thats probably our biggest single proposal.
STEWART: Justice OConnor, I was struck by one of the first suggestions or requests of the plan is to have the president get involved. What do you hope the president can do?
Justice OCONNOR: To support the idea of finding a place in our national government, to set up a project office for tackling Alzheimers. We need someone, and an office and a small group of people who can direct this project. And where to place it, and how to place it and how to get it funded are all things that ought to be of great interest to the president.
STEWART: Lets take a call from Elizabeth. Elizabeth is calling us from Hickory, North Carolina. Hello, Elizabeth.
ELIZABETH (Caller): Hello.
STEWART: Do you have a question?
ELIZABETH: Yes. I was wondering how you what your thoughts are on I know you mentioned chronic disease and how inflammatory diet has - affects that and, you know, or diets that consists of a lot of the hydrogenated oils, trans fats, artificial sweeteners like aspartame and Splenda, which affect and damage the brain cells
STEWART: Youre curious about preventative.
ELIZABETH: And (unintelligible) three.
STEWART: Youre interested about preventative measures.
STEWART: Dr. Satcher, can you take that?
Dr. SATCHER: Well, I think without question, if you are not engaging in a regular physical activity and get nutrition, then you should make that an immediate goal because you cant go wrong. Let me say that first. We can debate about how much impact that has. It seems to delay the onset of Alzheimers. Its very early in those studies, but it seems as if people who are physically active on a regular basis and who especially consumer a diet high in fruits and vegetables, antioxidants and things like that do well.
But its a no-brainer that to engage in regular physical activity at least 30 to 60 minutes a day at least five days a week and to consume diets high in fruits and vegetables, reduce sweets, and salts and fats in your diet, you cant go wrong. And I believe that it does have a positive effect, in terms of the onset of Alzheimers, but the science there is still developing.
STEWART: Lets go to Patsy. Patsys calling us from Archibald, Ohio. Hi, Patsy.
PATSY (Caller): Hi. Thank you so much for taking my call. What an interesting program. I thank everyone for being there. My husband and I, I want to say this, in some ways taking care of my mother until she died - and she did die in our home was the most beautiful, spiritual experience, I think, that I have ever encountered, other than the birth of my daughter. And, yes, there were difficult times, but my mother had this creative sense about her and my background is early childhood.
So I interpreted a lot of her communication and actions through my mind as early childhood educator, so I went along with her. And she just, in many ways, enhanced our lives, my husband and my life. I also had two caretakers come in. She had a pension and Social Security and that was enough money to take care of these caretakers. So, any expense that was incurred, my husband and I did that because we wanted to.
Also, I had the church involved with her. Wonderful people came into the house. And toward the end, of course I had hospice, and they were just phenomenal. And when my mother died, it was a very blessed, beautiful situation. The mortuary, we had contacted them many years in advance not years, but many months in advance, and they were very patient and cordial.
And I felt that this is something I will never forget as long as I live that my husband and I were able to contribute to the beauty and the experience of what she was able to understand and maintain in her life. My goal was every single day for these caretakers, to make sure that she looked beautiful. We had her hair done, we dressed her. And she was so amusing at times. And although other people might not interpret that as amusing, I did, because of my early childhood background.
One example is she loved to go into my walk-in closet, and she loved chocolates. So we made sure we had some chocolates in the house. And after she had died, I went into my closet and my suits had little chocolate fingerprints on them where she had been filtering through my suits. And then another real quick example.
PATSY: My husband came in from work one day, and my mother was still mobile at that time, and she pointed her finger and called me over to her to the corner of the living room, and she said, Patsy, we have got to get rid of that man. He is a nuisance to me, weve got to get rid of him.
(Soundbite of laughter)
PATSY: So there were so many things and having the blessing of her with us that year and a half that will be in my memory forever.
STEWART: It sounds like you do have wonderful memories.
PATSY: Yes, there were hardships, there were heartaches. We cried bitterly when she died. But I felt that there was no nursing home, there was no one else that could nurture and care for her the way my husband and I did. And he actively participated. And he would take her in and help change her diaper just as I would. And the caretakers we had, they never missed a day of work. They were phenomenal.
STEWART: Sounds like your mother was very lucky to have you. Patsy, thank you so much.
Mr. GINGRICH: You know, I just wanted to comment that isnt directly related to Alzheimers, but its related to care giving. My son-in-law, Paul Lubbers, his father had a pretty severe stroke a year ago in Sheboygan, Wisconsin. And Paul made the decision that he would invest a good part of the next couple of years to being his fathers caretaker, to being with him. My daughter Kathy has been totally supportive.
And they end up at times working out of Sheboygan and fundamentally rearranging their lives to enable them to have really helped Owen, his father, have a dramatically higher quality of life than he wouldve had under any other circumstance. And I think that they would both say that this is the kind of investment in being human.
That really is important and that we have to learn is a part of - for all of us - now, that doesnt mean we dont want a cure for Alzheimers, just as wed like to have a cure for a lot of other things, but it does mean sometimes when you have these moments that you realize how precious those kind of memories are going to be for the entire rest of your life.
STEWART: Dr. Satcher, you wanted to jump in?
Dr. SATCHER: I would agree. I think as pointed out for the Alzheimers Study Group, we have an opportunity to do a better job of supporting caregivers and that includes family members. We can do more training. We can develop systems of communications that will, in fact, enhance their role in caring for loved ones. So hopefully, part of what were going to do in the future, in addition to trying to prevent and to delay the onset of this disease, is to have in place a system of care, value-based, coordinated, but also one that defines caregivers as members of the health care team and provides the support for that.
STEWART: Lets try to get to one more call, one or two, if we can. Hi, John, youre calling us Dyer, Indiana.
JOHN (Caller): Yes. Thank you very much for taking my call.
JOHN: This is a quick legislative question, but Ill set it up. My wife has early stage and Im the caregiver. I had to leave work and take out COBRA, and weve had an incredible cost for insurance. Im wondering how soon we are to overcome this two-year barrier of wait for her. Were coming out of that now, where shes going on Medicare soon, but we had to wait two years.
I met a gentleman earlier who had Alzheimers diagnosed at 49. I cant imagine what their family is going through to try to put the cost together. That seems to be a quick solution quickly. And I admire the long-term continuum ideas of Representative Gingrich, who I admire very much. Maybe were close to this being a kind of snap decision since were on a one-way train here. Theres no evidence that were ever going to overcome this and come out of it, which might be the rationale for a two-year delay. Ill take your comments off the air.
STEWART: Thank you, John.
Mr. GINGRICH: Well, okay, I think, first of all, that what we want to get to is a kind of science which is predictive and diagnostic and which proceeds by a long distance ever having any kind of symptoms. We want to be able to preempt the disease, rather than deal with the symptoms of it. And thats why we believe that the only way you get off the one-way train is to have the kind of scientific breakthroughs that metaphorically turn it into an airplane.
And so I think we are committed to very fundamental breakthrough. And let me say one thing as somebody whos practiced the art of legislation for a long time, it is more important to talk about this report over the next two years than it was to get it written. The only way you change things is by driving at home and if every single family that is concerned about Alzheimers called their senator and their House member and demanded that they act on these proposals, you would see bills sail through the House and Senate.
And you would see the direction of scientific research change, but it does take a willingness to roll up your sleeves and truly make a difference. And as I said a minute ago, maybe steal it, create a new metaphor, to turn the one-way train downward into an airplane that soars above the current Alzheimer condition.
STEWART: Youve sort of answered my last question for you. What is it going to take, and anyone can jump in, to take this report in my hand and turn it into real action?
Justice OCONNOR: It is going to take actions by everybody out around our country who cares about this issue and get them to communicate to their members of Congress and in the Senate and say we need action on this. Thats essential.
STEWART: Dr. Satcher, what do you think its going to take to get that from words on a page and a detailed plan to some real action?
Dr. SATCHER: Well, leadership, clearly. I think leadership at several levels. In all of the major movements, including the Human Genome Project, leadership from the top has been very important. And its going to be important here, leadership from the Congress. But I think, as youve heard, a lot of times, a way to get that leadership is to mobilize people in communities to really advocate for changes in the way we do business.
We have all acknowledged that we have a health system thats in trouble in this country. Its urgent that we reform it. And we have an opportunity, I think, to reform it in a direction that will not only positively impact Alzheimers, but a lot of other health problems with which we struggle.
STEWART: And Mr. Gingrich, where can someone go if they want to read this report?
Mr. GINGRICH: I think the easiest way, although, its a little long if youre driving a car.
(Soundbite of laughter)
STEWART: Well, we - well link to it in our Web site for sure.
Mr. GINGRICH: Okay. I think that would be the best thing, if they could come straight to your NPR Web site.
STEWART: Well do it.
Mr. GINGRICH: Because otherwise its a fairly long URL.
STEWART: A drive.
Mr. GINGRICH: But I would say the key thing, and I thank the Senate aging committee for broadcasting, please pay attention to it, take a look at the report and help us.
STEWART: Newt Gingrich, Justice Sandra Day OConnor, Dr. David Satcher, thank you so much for spending the hour with us. We really appreciate it - and all your work on the report.
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