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Meeting Transcript
June 24, 2004


Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue, NW
Washington, DC 20004

COUNCIL MEMBERS PRESENT

Leon R. Kass, M.D., Ph.D., Chairman
American Enterprise Institute

Benjamin S. Carson, Sr., M.D.
Johns Hopkins Medical Institutions

Rebecca S. Dresser, J.D.
Washington University School of Law

Daniel W. Foster, M.D.
University of Texas, Southwestern Medical School

Francis Fukuyama, Ph.D.
Johns Hopkins University

Michael S. Gazzaniga, Ph.D.
Dartmouth College

Robert P. George, D.Phil., J.D.
Princeton University

Mary Ann Glendon, J.D., L.LM.
Harvard University

Alfonso Gómez-Lobo, Dr. phil.
Georgetown University

William B. Hurlbut, M.D.
Stanford University

Charles Krauthammer, M.D.
Syndicated Columnist

Peter A. Lawler, Ph.D.
Berry College

Paul McHugh, M.D.
Johns Hopkins University School of Medicine

Gilbert C. Meilaender, Ph.D.
Valparaiso University

Janet D. Rowley, M.D., D.Sc.
The University of Chicago

Michael J. Sandel, D.Phil.
Harvard University

Diana J. Schaub, Ph.D.
Loyola College



INDEX

 

WELCOME AND ANNOUNCEMENTS

CHAIRMAN KASS:  Can we get started?

Greetings, Council members, guests and members of the public to this, the 17th meeting of the President's Council on Bioethics.

I'd like to recognize the presence of Dean Clancy, the designated Federal officer, in whose presence this is a legitimate and official meeting.

I would also like to indicate at this time that our esteemed colleague Dean Clancy has recently been offered and has accepted the position as the Associate Director for Human Resource Programs at the Office of Management and Budget. He will be one of the four Associate Directors at OMB. He begins over there on Monday.

And I would like to take this moment to officially thank Dean for his extraordinary service as the Executive Director of this Council. His integrity, his competence and above all, his devotion to the common good of this group is very much appreciated by staff, and I'm sure I speak for all of you. And if you would join me in offering a round of applause and best wishes.

(Applause)

CHAIRMAN KASS:  I would also like to announce that Yuval Levin has agreed to serve as the Acting Executive Director in Dean's departure.  Yuval, please, would you stand? And thank you very much for doing this.

(Applause).

CHAIRMAN KASS:  And welcome back to Bill May, who is who our senior consultant on this project on aging.

SESSION 1: AGING AND SOCIETY: SOCIAL-SCIENTIFIC AND HUMANISTIC PERSPECTIVES

CHAIRMAN KASS: It's entirely by coincidence, I'm sure, that we meet again for the second time in the Ronald Reagan Center to discuss ethical and social issues connected with Alzheimer's Disease and dementia.  The people who planned both of things, I'm fairly sure, had no advance knowledge of President's Reagan's recent death. And whatever else one wants to say about his legacy as a public figure, certainly more than a small footnote to his life will be the letter that he wrote to the American people in 1994, 10 years ago, it's hard to believe that it was that long ago, which more than any other single event I think brought Alzheimer's Disease out of the closet and into the national consciousness. 

Lots of people knew about this, lots of people were in denial. But for this beloved man to speak so candidly about this, I think made a large difference and the climate seems to have changed, at least for serious attention not only to the science of the subject but also to the way we begin to think about it.

Dementia, like disability, decline and death, are depressing subjects not only to those who are afflicted with it or those who care for them, but, one would also add, to us the apparently healthy who prefer not to be reminded most of the time of our finitude and of the various blows that fate has unavoidably in store for us.

Our denial is, in fact, increased by the quiet belief that with the aid of science we can overcome or at least greatly moderate our fate.  Yet, ironically, as a result of previous successes of science and medicine more and more of us are living to encounter the chronic and especially mind-destroying diseases of old age.  We now have, as everybody knows, between 4 and 5 million American afflicted with Alzheimer's Disease and the predictions are that as the baby boomers come into their old age, this number may perhaps even triple by mid-century.

The challenge for the society is how to think about the dilemmas of an aging society with an increasing number of people living into their old age, many of them in greatly diminished conditions, at least until science does more of what it promises to do.  In an age also where family structure is not what it used to be and the burdens on the caregivers are at least as great, if not greater than the burdens on the afflicted.

This Council has decided at least to try to explore this topic— the ethical and social implications of dementia, especially Alzheimer's Disease— not because we think that it is the sexiest of topics.  It is a topic of everyday ethics.  It is a topic of immense social importance.

Last time we put our toe in the water with a discussion of the concept of the demented person and had a discussion about the subject of identity.   We also had a discussion of advanced directives and the questions surrounding the adequacy of trying in advance to lay out what people want to be done when they become incapacitated.  We might return to some of those more focused problems in subsequent meetings.  But as a result of the last meeting, the staff and I thought what we really needed was to set the stage for any further more focused studies in this area.  And that means learning something about the story of our aging society, to learn something more about Alzheimer's Disease and to learn something more about the tasks of giving care for people with dementia and other severe disabilities.  And as a result we have planned a day devoted entirely to this subject.

The opening session is not about dementia in particular, but is about aging and society:  social-scientific and humanistic perspectives.  And we're really very privileged to have two of America's most distinguished students of this subject.

Robert Binstock, who is Professor of Aging, Health and Society at the School of Medicine, Case Western Reserve University, is a political scientist by training, but who has been in this business, I think, for close to 40 years.  I won't rehearse things in the bibliography, but he has been on top of almost every aspect of this subject.  And he will speak to us first giving us something of a social-scientific perspective on the subject.

And he'll be followed by Professor Thomas Cole, who is a Distinguished Professor and Graduate Program Director at the Institute for Medical Humanities, the University of Texas Medical Branch, Galveston.  Professor Cole is one of the country's leading humanists writing on this subject. His The Journey of Life, from which we have read some selections this time, is really quite extraordinary.

And welcome to you both.  We are really very pleased that you are willing and able to be with us this morning.

I think we'll simply let you go in order and reserve discussion for the end, unless there are some points of clarification in between that people would like to raise.

Professor Binstock, please and welcome.

PROF. BINSTOCK:  Thank you very much.

I am honored to be here and to be invited to be here, and to be present with you.

The task set for me is a bit daunting in the sense that if you're talking about the aging society, you're talking about every dimension of human life.  When you cut things by age, you encompass all aspects of human life and the variations among people.

And the challenge is reflected in my choice of a very narrow reading for you, because I really couldn't think of anything that was specifically written to provide a broad overview that was up to date and focused on the things that, perhaps, I thought you might to hear.  So I just gave you the short piece so you wouldn't have much agony and we can have a good discussion about a wide range of things.

You're all aware that the percent of the U.S. population that's 65 or older, and I'll generally be using 65 or older, has increased extraordinarily over time.  And you'll see that by 2030 or so when the baby boom is all on-line as older people, that fully 20 percent of our population will be 65 an older.

A simple way to grasp this in terms of impact is that today there's only one state, Florida, that has a population in which 18 percent are people 65 and older. But in 2025 roughly four-fifths of the states will have that. And largely, if you think it through, the ones that will not have that large proportion of older people are states where there are a lot of immigrants.

Now, part of this increase in proportion is due to, naturally, declines in infant mortality early in the last century and before that, but an even bigger factor has been a long term decline in U.S. fertility rates, with one exception, and we'll see now if I can manage the laser pointer, right there, which is the baby boom. Seventy-six million Americans born between 1946 and 1964. 

And so with the baby boom coming on line if you'll look at the absolute numbers, you'll see that the aged population will double from 35 million today to 70 million in 2030 when all baby boomers will be in the ranks of old age.

Now as always with baby boomers, they have implications for most sectors of society, even as they did when they entered grade school and a lot of schools had to be built awful fast.  And so one of them is, of course, that the number of older consumers will double.  It'll be a big market out there.

Another is that the demand for health care including long term care, will be much greater than it is today.  And I should mention, there's an enormous shortage of nurses and nursing aides even today.  One report out two years ago suggested that together we probably could use about 500,000 more nurses and nursing aides, including all the long term care needs.

There'll be an increased number of older workers.  One study out of Cornell suggests that about 33 percent of baby boomers will say they want to work full time continuing well past 65. And an AARP study said 85 percent want at least part time work.

The housing market could become depressed through over supply in the future as baby boomer's start to downsize by selling their houses and put a glut on the market.

And there'll be an increase in the number and percentage of older voters.  And I'll go into this in a little depth.  And when I notice that nearly a third of the Council members are political scientists, although Jim Wilson is not here today, I thought you might be somewhat interested in this in more depth.

You'll see that the percentage of people of voting age will reach about 27 percent, that is, percent who are old of those eligible to vote will reach about 27 percent in 2035.  And the import of that is magnified by the fact that older people cast a larger percentage of the votes than they are as a percentage of the voting age population. That's because they turn out at a higher rate; this has been a long term trend.  And actually, other age groups even as cohorts change, have declined in their turnout rates.

If one uses a couple of extrapolation models, which of course is a very unreliable mode of prediction, and you look at the likely percentage of votes that could be cast by older persons in 2035, about a third of all votes.  And another model you can see it getting up to 41 percent, about there.

Now there are some who have had apocalyptic concerns about this, such as Lester Thurow, who has written that democracy will meet its ultimate test in the aged and that class warfare will not be between the rich and the poor, but between the young and the old.  Just a few comments on that.

One of them is that older persons to date have not shown any tendency to vote cohesively.  In fact, they distribute their votes among candidates in the same proportions as people in other age groups do, except for the youngest age group which always deviates from the strata above them.  And that figures in terms of not having standing partisan attachments which have strengthened over time and so forth.

Nonetheless, even though the business about Social Security is the third rail of politics, this journalistic cliche, touch it and you're dead. You know, that's never happened.  And if you want in questions later, I can show you an example involving Ronald Reagan.

Nonetheless, there is an impact because of this latent constituency that no one in Congress wants to offend, okay.  And so as a consequence, old age policies have stayed very much on the agenda, probably will stay very much on the agenda in the future even though there isn't this voting effect. But it's the fear.

There's a great book called The Logic of Congressional Action by Doug Arnold which explains how you don't want to get caught out on a limb and portrayed  as being anti-old when you're running for reelection.

In any event, we can talk about that more later if you're interested.

Now, from 1935 to the late seventies we constructed an old age welfare state in this country starting with Social Security and then through Medicare and a great many programs, and the result is that today about a third of our annual federal budget goes to programs benefiting older persons.  Still, even with that, economic, health and health care problems of a substantial nature remain.

Now Social Security has reduced old age poverty from about 30 percent in 1960 to about 10 percent today.  But some 3.6 million older persons are still in poverty.  And I want to stress to you what a harsh measurement the poverty line is by looking at the budget of an elder couple that is at the poverty line, which is about $10,700.

According to the government's assumptions, which are one-third of the budget for food, one-third for housing and one-third for everything else, here's what that amounts o: $34 week each for food and $297 a month for shelter and, again, for everything else, which of course means furniture, utilities, clothing, transportation, you know, plus toilet paper— everything including out-of-pocket medical and dental expenses which average over $300 a month for older people although for poorer older people they would be less than that. But at least that gives you a rough idea.

And I should point out that roughly two-fifths of the elderly are under 200 percent of the poverty line. So when we say that only about 10 percent of the elderly are in poverty, be mindful that, you know, you get up to about 40 percent of the elderly and they're not much better off than that. So they've got an income of $20,000 and you can double that budget and so on.

The reading I gave, a study that AARP did, suggests some future improvement for baby boomers, through a DYNASIM methodology.  But this assumes that Social Security is sustained in its present form. And, in fact, Social Security is the major source of income for poorer older persons. 

For the lowest income quintile of the elderly, 81 percent of income is provided by Social Security and another 10 percent by public assistance.  So you can see that maintaining Social Security at its present level is very important for the income structure in the future.

Now, what are the challenges of sustaining Social Security in our aging society?  After all, we're going to move into a point where the number of beneficiaries will have doubled by 2035 unless we change the rules, okay.

Well, according to a CBO report released just this month, which is a bit more optimistic than the trustees of the Social Security funds report early in the year, we'll need to begin drawing on the Social Security Trust Fund in 2019.

The Social Security Trust Fund right now has a surplus of nearing $2 billion -excuse me, $2 trillion.  You know, the old Everett Dirksen line.  $2 trillion.  And it'll be well over $3 trillion by the time we're talking about.

Now, by drawing on it this simply means that the payroll tax revenue plus the taxes on Social Security income for upper income people, which is dedicated to go into the trust fund, won't be adequate to pay benefits starting in 2019.  So we'll drawing on this reserve, which has accumulated over the years because of some reforms that took place in 1983 in a big package which overtaxed the payroll tax, basically.

In 2052 the trust fund will be exhausted and only 80 percent of benefits can be paid. But the problems of sustaining us to 2052, which seems way off, are really more difficult than simply drawing on the trust fund because the trust fund consists of a stack of IOUs, U.S. bonds.  As soon as the money comes in and becomes a surplus, by law it must be invested in U.S. bonds, which are paying about two to three percent interest when the government borrows from itself. And then, of course, then that money goes on to be spent for all sorts of other things; anything that the government wants to spend out of general revenue.

And so in order start drawing on the trust fund we have to convert it into cash, which means we're going to have sell bonds on the open market at a much higher rate than we've been selling them to ourselves.  Okay.  And I'm sure many of you are aware that our debt is growing and growing and in the hands of people in foreign nations.  For example, I read recently that about 40 percent of our debt is held by Japan and China together, just today. And, of course, there is the issue with deficits.  We don't know whether there will be deficits or surpluses down the line. But, you know, faith in buying U.S. may decline geopolitically or for strategic purposes from other nations.

Now, turning to Medicare, that's enabled tens of millions of older persons to have health care who otherwise wouldn't have had it.  The impact of this can be seen in this slide where, if you'll notice that if we look at the uninsured, people 65 and older less than one percent.  On the other hand if you didn't have Medicare, according to my back of the envelope calculations, it would look something like this in terms of who would lack health insurance. Because there are lots of problems for getting health insurance if you're old in the public sector.  And I've sort of noted those at the bottom of the slide.

Under a "middle cost" scenario, Medicare will grow from 2.4 percent of GDP today until well over 8 percent in 2050.  And that's just a guess, like all these projections. But one thing that can be said clearly is that sustaining Medicare is a much more difficult challenge than sustaining Social Security. 

In the case of Social Security you're talking about doubling the number of beneficiaries, you've got specified benefits.  In the case of Medicare you don't have specified benefits.  What you have is an obligation, at least under present law, to pay the health care bills of the people out there who are covered by Medicare, which is about 41 million people, 90 percent of them older people.

And the big challenge will not be the aging of the population.  In fact, Uwe Reinhart had an excellent article in Health Affairs in December showing once again that population aging does not drive health costs; it's a pretty minor factor.  What drives them is the discovery and implementation of new technology; it tends to be very expensive.  And the thing about it is that when we implement new technology, we don't stop the related old technology.  Take the case of noninvasive imaging.  You know, we started out with the x-ray and we got the CAT scan and the MRI and the PET scan, the DOG scan.  And you can be sure, you know, you can do anyone of those in a space of a couple of months as a patient, depending on what you're undergoing or what's being diagnosed. And when we get to new scans, all these other things will still be used.

So that's the central problem.  That's been brilliantly pointed out by a lot of people, including the economist David Cutler at Harvard.

Now despite the present access through Medicare, there are a lot of health and health care problems that remain.  Leon has already mentioned the prevalence of Alzheimer's Disease at about 4.5 million today. Could be as much as 16 million by 2050 according to the Alzheimer's Association, which of course has a bit of an incentive to boost the number of people likely to be affected in order to back up their cause of getting research to deal with this effectively.

The costs of Alzheimer's Disease just through Medicare and Medicaid totaled $50 billion in 2000 and it is projected to be $72 billion just in 2010.  The cost of Alzheimer's Disease to business, according to a study done by the Alzheimer's Association, was $61 billion 2002.

Most older persons have at least one chronic illness, and many have multiple chronic illnesses. In fact, it's more common to have co-morbidities, as they're called, then to have just a single condition. 

And here are the most frequent chronic conditions of older persons.  You'll see that arthritis, actually, tops the list.  Alzheimer's doesn't quite make it.  It would be not too far below the diabetes there.  But you'll see it's high blood pressure, hearing impairments, heart disease, orthopedic impairments, cataracts, sinusitis and diabetes.

These chronic conditions, as I said, are often multiple for any given individual, lead to disability and dependency in activities of daily living.  You'll see that the percent of older persons with disabilities and dependency increases substantially by older ages within the old age group, the right hand brown bars being of course the 80-plus group.  So you can see in the "needing assistance" area over in the right we're talking about over 30 percent, really about 35 percent of people 80 and older needing assistance.  Now, what does that mean:  Needing assistance?

Well, there are several levels of this.  One is customarily called "assistance in activities of daily living" (ADL). And these are very basic activities of daily living.  As you can see, eating, getting in and out of bed, getting around inside the home, dressing, bathing and toileting.

Then there are "instrumental activities of daily living" (IADL) which are not as fundamental, but actually are essentially for being able to live independently. So this is not being able to do housework, laundry, prepare meals, grocery shop, travel outside the home, manage your money or use a telephone.  These are typical of those.

And then, of course, there are those who may not have the above, but who require 24 hour supervision.  That's usually a person with Alzheimer's Disease who may cause safety problems to themselves, may not remember to eat, etcetera, etcetera, etcetera.

The residential distribution of dependent older persons, about 1.6 million.  4.5 percent are in nursing homes.  About 4.3 million, 12 percent, are in the community who are dependent in activities of daily living.  And then about 1.4 million in the community who are dependent in IADLs only.  Have no problems with ADLs, but nonetheless can't manage their lives independently.

Now, over the past several decades there has been a trend of slight decline in disability in the older population, and that's sometimes optimistically cited.  It is a good optimistic trend.  But the problem is with the aging of the baby boom in the next several decades, there's going to be a massive increase in the absolute number of disabled older persons and the cost of their care. So the decline in the rate of disability and dependency doesn't eliminate that problem.

And here you see it reflected in estimated costs by the Congressional Budget Office.  In 2000, $123 billion spent on long term care services, and they're projecting that by 2040, that'll almost triple $347 billion.  So there's a daunting task there. 

And since I see my time is going fairly well, I can add in ad hoc without a slide that today about 80 percent of the home care that's provided for dependent older people is provided informally on an unpaid basis, usually by a spouse or a daughter or a daughter-in-law. There are some men caregivers, but they're relatively rare.

And as we look to the future that may be difficult to sustain, and it's become harder and harder for that level to be sustained simply because the percentage of adult middle-aged women who might be caring for their parents who are in the labor force has increased tremendously.  I have a slide on that in my reservoir of things for the question period, but I believe it runs since about 1960 from about 40 percent in the labor force to over 60 percent in the labor force today, and the trend keeps going up as far as that goes.

It's also the problem of so-called blended and non-family; that is to say we have had sustained periods of high rates of divorce and remarriage. And the issue of whose mother-in-law is whose, you know, becomes a little confusing over time and where does the obligation fit in... for caregiving and so on.

Well, moving along now so I don't take too long, the dilemmas of financing long term care are tremendous.  The average private pay annual cost of a nursing home today is about $60,000 and some of them run as high as $140,000. I'm not sure how much added value you get with each $10,000, but that's a whole subject of discussion.

Medicaid pays for about 35 percent of long term care for the aged, but all signs indicate that there'll be no growth and perhaps cuts in Medicaid both at the federal and state level in the year immediately ahead. In fact, like this year in many states.  So that's not a good sign.

Meanwhile, there are a lot of people who shelter their assets in order to become eligible for Medicaid. As I'm sure you know, in order to qualify for Medicaid you have to have an extremely low income and negligible assets — about $2,000.  And if you do qualify for Medicaid, Medicaid will pay the difference between what you can pay maybe through your Social Security check and the rate that the state approved for Medicaid in that state. And basically you have your long term care for free.

So there are a lot of peopl, in anticipation of this, and how many is not known, who consult Medicaid estate planning lawyers, as they call themselves, to shelter their assets in various ways through various kinds of trusts and then become eligible for a program for the poor without being poor.  Although they're technically poor, maybe in control over their assets.   And that's sort of a problem because one can see some moral and ethical aspects to that.

Then there's private long term care insurance, which actually very few, relatively few purchase. Perhaps 5 to 7 percent of the elderly population pays premiums for such insurance.  One of the reasons is denial that you're going to need long term.  Another reason is that it's expensive.

You know, I've got it now and with inflation protection of 5 percent to keep my benefit relevant, it costs about $2500 a year and it doesn't work out to be helpful in terms of a medical deduction and so on.

One thing one could do is have a tax code reform, such as giving you a credit for the premiums that you pay for long term care insurance.  Right now all you can do is include it as a medical deduction. And I can tell you as someone who has a lot of major operations if you have any insurance at all, you will never qualify for a medical deduction.  It has to be what's in excess of 7 percent of your adjusted gross income.  But you could do that.

And then of course there's the possibility of raising taxes, which may be coming the future, in which we could expand public support for long term care, not only through Medicaid but through other mechanisms.  Certainly this was considered a lot in the late '80s and in the early '90s.  And actually was part of President Clinton's Health Reform.  Of course, there's an issue there, which is why should I pay taxes so somebody else can avoid spending down their assets and providing an inheritance for their children?  Why should I be paying for somebody else's inheritance, which is in effect what did happen.

So finally in conclusion, there are plenty of other things one could talk about, but I sort of considered what are the most important issues for a national bioethics council in particular regarding the aging society, and I picked out two as priorities.

One is the issue of old aged-based health care rationing.  This has been proposed by some, including Dan Callahan, for nearly 20 years, saying we can't afford the health care of older people, and of course he had a lot of philosophical reasons for this, too.  And he proposed that Medicare not pay for lifesaving care, as he called it—well, actually, he called it "life extending care," to be accurate—for anyone who is 80 or older, saying he used that as an age to approximate when one had lived out a natural biographical lifespan.

This issue has stayed alive, it's going to become more and more part of the public discourse, I believe, as Medicare expenditures continue to rise at a rate that's well above health care expenditures in general.  And, frankly, you notice I didn't talk about any solutions for Medicare.  I don't know anyone who has a solution to Medicare in the policy world at this point; what to do about it in the long run and how to sustain it.

The other issue is whether or not aggressive medical treatment should take place for persons who are afflicted by Alzheimer's Disease.  You know, the best way I can express it is this:  My mother for several years got to the point where she didn't recognize me.  You know, but it happened gradually and so it was not a shock to me.  But what happened whenever I visited her, was that every ten minutes she would say "Now, who are you?"  And I would say "I'm your son Bob."  And she said, "You are?"  And she would be all delighted.  And ten minutes later she would ask me the same thing, and she'd be delighted all over again.  I didn't think ever think I could please a woman, you know, over and over again like that.

On the other hand, it got to the point where her physician called me up. She was in a nursing home, of course.  And said after some years of transferring her to the hospital for blood transfusions. She had some GI problem and he said to me at one point, "It's not worth diagnosing because we're not going to rip her open anyway to find out what it is or deal with it, rather, even if we found out."  She was now in late 90s.  And he said to me at one point, "You know, given where she's at now," it was more than the blood, "I'm thinking of not transferring her to the hospital and try to give her the best care I can in the nursing home."  So that's putting it on me at that point, and these are the kinds of issues — whether feeding tubes or less than that — which issues you guys should wrestle with.  How aggressively does one treat people with Alzheimer's Disease? What are the domains of professional responsibility there, family responsibility and so forth.

So, I don't want to take up anymore time, but later I'll be glad to answer any questions.  As I implied, I have a reservoir of about 15 additional slides here which I can bring up to maybe respond to your questions.

Thank you.

CHAIRMAN KASS:  Thank you very much.

Unless someone has a pressing question of clarification, I'd like to suggest we go on to Thomas Cole's presentation.

(View Prof. Cole's presentation in Acrobat Reader)

PROF. COLE:  Thank you very much for the honor of inviting me and allowing me to participate. 

I'd like to talk with you basically about what I think is the central question of humanistic gerontology. It's a problem that I've been wrestling with since I was 4 or 5 years old, actually, for autobiographical reasons.  But it's really, "what does it mean to grow old?"

I think this question really has no single or universal answer, and certainly it doesn't have one that finite historical beings can provide.  Really the question itself is abstracted from other innumerable questions that arise in historically and culturally specific forms. 

For example, what is a good old age?  Is there anything important to be done after children are raised and careers are completed?  Is old age the fulfillment of life or is it a second childishness?  What are the possibilities of flourishing in old age?  How do we bear decline of body and mind?  What kind of elders do we want to be?  What are the paths to wisdom?  What are the virtues and vices of the elderly, something that Bill May has written eloquently about.  What kind of support and care does society owe its frail and broken elders?  And what of the obligations of the old, a question which I think is much overlooked and quite important.

To think coherently about these questions, at my own peril, I think I have to disagree with the Council's definition of aging as it appears, at least in Chapter Four, "Ageless Bodies," of the Beyond Therapy volume.  In that chapter the Council chooses to use the term "aging" synonymously with the term "senescence."  "Aging," the Council writes, "therefore" because of the way it's being used synonymously, "denotes the gradual and progressive decline of various functions over time, beginning in early adulthood, leading to decreasing health, vigor and well-being, increasing vulnerability to disease, and increased likelihood of death."  I believe that is an incomplete and misleading definition. Despite my disagreement, however, I think my reflections are very much in keeping with the spirit of the Council's deliberations, especially the transcripts that I read through of your April 2nd meeting on dementia and personhood.

So my goal here is not really to try to suggest a single correct definition of aging, although I do think that any adequate definition must do justice to what Gil Meilaender calls the fact that we are embodied spirits and inspirited bodies.  But I speak really as a philosophically minded cultural historian and medical humanist.  And what I'm going to try to do is basically three things.

First, I want to point out the conceptual limitations of this definition. Then I want to suggest an historical account of how it has come to dominate and I think distort our thinking about aging.  And finally suggest just briefly that we need to cultivate much more existentially and socially nourishing meanings and practices of aging.

To identify aging with senescence, of course, is perfectly acceptable for biological aging. It allows us to get on with the business of scientific research and improvement of health. But it is, nevertheless, a terribly impoverished definition because it ignores the human experience of senescence, the constitutive role of human relationships,and social structures as well as the beliefs, feelings, images, attitudes and ideas that irreducibly shape the reality of aging.

Human beings are self-interpreting creatures.  We are spiritual animals who need love and meaning no less than food, clothing, shelter and health care.  Aging, therefore, cannot be defined as if biological changes are the underlying truth upon which are constructed psychological, social, political and cultural responses.  Biological aging is certainly real, but it does not exist in some natural realm independently of the ideals, images and social practices, including science, that conceptualize and represent it.

Now, this may seem like an obvious point to some of you, it may seem wrong headed to others or it may seem just merely a quibble, irrelevant to many of the hard ethical questions about research, policy, biotechnology and clinical care that directly effect the lives of millions of older people.  But my view is that the conflation of aging with senescence is so pervasive that it silently undermines human flourishing in later life, even as it narrows the existential ground for thinking about ethical and spiritual issues in the fields of gerontology and geriatrics.

Moreover, this conflation grows out of a specific cultural history which reveals a great deal, I think, about the peculiar pathos of aging in America.  This is I think connected to the pathos of denial that many of us have been just hearing about.

So I want to offe, based on some of my earlier work, some reflections, philosophical historical reflections on the meaning of aging, first in northern European culture and then in American culture.  And I'm referring, of course, to the dominant northern European and American cultures, not to the multiple cultures that have emerged and co-exist with the dominant culture.

So I begin with the idea that culture provides the unarticulated background understandings and the daily  habits of dress, bodily comportment, sanctioned activities within which and against which people live their lives.  Charles Taylor has pointed this out eloquently in an essay about 10 years ago called "Two Theories of Modernity."

Culture shapes the experience of meaning; that is the lived perceptions of coherence, sense or significance in later life. And culture sometimes leaves us vulnerable to the experience of meaninglessness.  Every culture attempts to meet the existential needs of its elders by drawing on its core beliefs and values to construct ideals of aging, ideals of old age and its place within the cycle of human life.  Myth, metaphor and other forms of symbolic language shape these ideals and, in part, give meaning to old age conveyed in the dominant social opportunities that are available to older people.

An ideal old age legitimatizes roles and norms appropriate to the last stage of life and it provides sanctions and incentives for living with the flow of time rather than trying to stem the flow of time, which is the experience of so many of us in this society dominated by the traumatic fear of aging.

I think, conceptually, ideals of aging are carved out of three basic dimensions of meaning:  The cosmic dimension, the social dimension, and the individual dimension.  Each culture fashions its own ideals of aging from all three sources of meaning, prioritizing and blending these in the light of its own history, social structure and belief system.  So to oversimplify for heuristic purposes, I think that the historical evolution of western ideals can be divided into three periods, and historically they would move from top to bottom in this slide.       

Classical and Christian ideals that gave pride of place to the cosmic dimension of meaning and they aimed at transcendence through philosophical or religious means.

Enlightenment and Victorian ideals based on the priority of social meaning which aimed at the rewards both sacred and secular— of living a life of middle class morality.

And finally, our modern scientific ideals of aging that are based on the priority of individual meaning which aim at the goal of health through the methods of science and medicine. 

Or to put it another way, from antiquity to the 18th century ideals of transcendence taught that the goal of aging was to bring one's self into alignment with the order of the cosmos or into alignment with its creator.

From the late 18th to the mid-20th century ideals of middle class morality articulated a social behavior considered necessary for a good old age in this life and the next.  And here I have in mind the classic bourgeois virtues of self-reliance and independence.

And since the mid-20th century ideals of normal or successful aging have aimed at maximizing individual health and physiological functioning through scientific research and medical management.

So we've had basically a shift in the blending of these three elements.  And we need to weigh the costs and benefits of these shifts.  So let me just briefly really show you this rather than talk about it using some exemplary images from the History of Life Course in the United States and in Europe, and this will allow you to visually see what I mean.

First, take a look at this sort of cosmic map.  It's a monk's manual from the early 11th century. It consists of a theo-concentric cosmos; God is in the middle and the four stages of life are linked to the four seasons of the year.  The stages of life are:  Estes, youth; autumnus, middle age; senectis, old age, and; puerites, childhood.  Each of these is connected to a season of the year and to the zodiac and so on and so forth.

The idea of this really for the monk was to meditate on the meaning of his or her place within this cosmic map.

Here is another illustration of basically the same idea.  The life cycle is represented, the four stages of life in a corner subdivided into eight around these medallions. And Christ is in the middle.  And you can see this on a gothic cathedral window in Paris.  And the translation of the Latin is "I rule all with equal reason."  And every stage of life is equally close and equally far away from the source of all meaning from God.

Again, we have the circular composition, in the 15th century an anonymous woodcut, actually this is 1470.  What's happening here is this is produced in a more urban society.  It's beginning to experience the anxieties of urbanization and the marketplace. You see the seven ages of life are displayed around the wheel of life. And you still have this circular composition, which implies of course continuity, immortality, ongoingness, but you also have a situation where it takes an angel to hold the beginning and the end of life together.  Things are beginning to change. The lifecycle will no longer be understood and represented in circular terms.

This image from the Reich's Museum at the time of the Protestant Reformation is an image, it's a classic momento mori.  'We are born to die,' this skeleton figure tells the sort of man dressed in a Roman toga.  What I want you just to see primarily here is the importance of the hourglass.  The hourglass was created in the 13th century as a means of keeping time, but in the 14th and 15th centuries it emerged in painting and iconography.  And here for the first time it appears as a representation of the amount of time that is permitted to each individual life. Each individual life is becoming the focus of this iconography.  And the amount of time available, the amount of precious time that's available is one of the key elements of a new way of thinking, especially associated with Protestantism.

Now, here is the classic image of the lifecycle in the West, the rising and falling staircase. It really becomes the standard western image of the lifecycle for the next 300 years and eventually comes to dominate popular thinking in Europe and America.  The medieval circle has been broken and replaced by an image in which the beginning and end of life do not come together.  You can clearly see the priority given to middle age by its height.  The hourglass is hard to see, but the beginning it's full and at end it's empty. Underneath the arch is a representation of the second coming. 

So as this iconography becomes more and more popular, what it's saying to people is there are ways to comport yourself at each stage of life, and the way you do this has an effect on your success in this world and your eternal fate.  Because we have the image of Christ, Christ's return separating those who will be saved from those who will be damned.

You still have in this image on the left hand side you can see leafy trees representing spring, on the right hand side the tree without leaves representing winter and the owl of wisdom on the tree.

Again, this becomes a much more standard middle-aged middle class norm that includes women increasingly.  And if you took the time to translate these Dutch passages, basically what you would be seeing is instructions that were given to the figures on each stage of life for how to live properly in a way that allows people to begin to think of life as a career.  This is what so unusual and so important at the time period.

So this iconography appears during the reformation. It reflects the Protestant sanctification of everyday life and work. Individuals are encouraged to see their lives as careers, as an interlink to succession of roles and behaviors. To use their brief time on earth properly and this iconography becomes a visual and a cognitive map of how one should envision one's life.

It also reflects a yearning for a long, healthy and stable course of life in this world as preparation for salvation in the next.  If you note that there are ten stages; this idealized lifecycle lasts 100 years.  This certainly doesn't reflect the demographics of the 17th and 18th centuries.  It represents what people were yearning for; long, stable, orderly life in this world as preparation for life in the next world.  And this iconography really prefigures the emergence of the individual life course as a social institution that become bureaucratized in the 20th century where we begin to have age-graded institutions. As John Bowles put it — boxes.  We get shepherded into boxes of school and work and retirement. This is prefigured in the iconography.

The British form you can begin to see the absence, really, of nature, representations of God, representations of life. 

A late 18th century French form, by this time this was no longer art.  This was just mass production. You began to see these everywhere — plain Spanish ceramic tiles, games, German beer mugs.  These were essentially the forerunners of posters and the maps.

Jacob Grimm, in the introduction to Grimm's Fairy Tales, talks about one of these hanging in the hallway of his home as a child and the formative influence it had on him. 

Here we see it through Currier and Ives.  You can also see something that's been present all along, which is the connection of stages of life with particular animals.  Again, there's still some reference here to springtime as the first half of life and winter as the second.

Now, this image comes from George Miller Beard's book called American Nervousness published in 1880. Beard was one of the first American neurologists and was the first person who studied really what we think today of as the issue of productivity and age.  And what I want you to notice about this table from his book was that it was really modeled, the rising and falling of physiological energies that is at the heart of the traditional iconography, but everything is stripped away and the focus is on when people do their best work.  This is, of course, something that might be expected in a society where corporate and industrial factories are beginning to want more and more labor out of less and less time.

This I threw in just for the fun of it. It shows how many places this iconography moved into.  This is really from an early 20th century greeting card.  And you would note here that like Hebrew, it reads from right to left rather than from left to right. And the pinnacle, interestingly enough, is the Bar Mitzvah boy.

So what I really I wanted to say about this is the pervasiveness of how it shapes our way of thinking, about the nature of life and the way we ought to comport ourselves.

Here's another representation of the lifecycle. It's really a graph from Erick Erikson's "Eight Ages of Man:  Childhood and Society" in 1949. Rather than think about it as a theory, I suggest we think about it as an image.  And the image is onward and upward. It's an image of a one way street to progress and then sudden oblivion which is beginning to become sort of the desire, the goal of sort of dominate American culture.

Now where we see a cartoon from Saul Steinberg in 1954, who is already critiquing the place of old people in the bureaucratized lifecycle.  And this is, of course, what people began reacting to in the 1980s saying, you know, we need an age-irrelevant society, that more and more we need to free ourselves from age-graded institutions.

I pulled this image from the wall of my father-in-law's shoe store in Omaha, Nebraska, in 1979 because it represents, I think, what the Council has called "ageless bodies."  The willow tree is a traditional symbol of immortality, and I think increasingly what this image represents is a lack of tolerance for decline, a lack of tolerance for the rising and falling of physiological energies and the need to really make sense of life as a whole.

Now, finally I want to share with you the image from the cover of the volume in 1983 of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.  This volume was entitled "Deciding to Forego Life-Sustaining Treatment."

Notice the hourglass. Notice how it has become stripped away from everything else that surrounded it traditionally in the iconography of the lifecycle. 

And just by chance, in the late '80s I was sitting next to Joanne Lynn one day at a conference.  She was the staff physician for the President's Commission and had chosen the cover for this. And I asked her why she picked it. And she said "Well, what I really wanted to do was put a physician on the top cutting a circle and putting more sand in the hourglass." 

So, the point here is what this represents is this continuous evolution towards the focus on individual health as the sort of primary way of thinking about the meaning of aging.

So, let me just summarize what I've been talking about.  Between the 16th century and the third quarter of the 20th century western ideas about aging underwent a fundamental transformation and spread by the development of modern society. Ancient and medieval understanding of aging as a mysterious part of the eternal order of things gradually gave way to secular, scientific and individualistic tendencies of modernity.  Old age was removed from its place as a waystation along life's spiritual journey and redefined as a problem to be solved by science and medicine.

By the third quarter of the 20th century advances in science and medicine along with the institutionalization of retirement supported by the welfare state and company pensions created an unprecedented situation:  That yearning that we saw in early modern iconography, the yearning for a long orderly and stable course of life had become a reality for the majority of Americans.  At the same time, however, older people were moved to society's margins and defined primarily as patients or pensioners and the cultural dominance of science had drained many of the cosmic and social resources which had traditionally supported the meaning of later life.

So where does this leave us?  In the early 21st century I think we're living through a search for ideals and practices of aging that are adequate to a society of mass longevity in a pluralist late or post-modern culture.  This search challenges us to recover and reshape the cosmic and collective sources of meaning, to make visible and viable the moral and spiritual dimensions of aging, to acknowledge that existential mystery has not been eliminated by scientific mastery.

Now, it may not be possible, but viable ideas of aging I think must somehow find a way to negotiate between the ancient virtue of submission to natural and social limits and the modern value of individual development and growth for all.

Later life today is a season in search of its purposes. On the negative side contemporary life exposes older people, as well as the rest of us but more so I think to crises of meaning and identity.  What Anthony Giddens talks about is ontological insecurity.

In addition to the biological process of aging itself, there are many forces in contemporary culture that undermine one's capacity to build a solid and stable identity in later life. The continuing forces of ageism, the economically destabilizing effects of globalization.  The dizzying speed of technological and social change:  There's a sense in which we are all Rip Van Winkles now.  And the uncertain future of the welfare state and the continuing deep-seated fear of aging and the relentless hostility to physical decline in our culture.

On the other hand, we're beginning to appreciate the blessings and the possibilities of our new abundance of life, to borrow a phrase from Rick Moody.  Older people, as we know, healthier and more numerous than ever before, are exploring boundaries of our new map of life as they seek meaningful lives of personal growth, social meaning and contribution, and, of course, health.

Signs of real commitment to human development in later life are evident in many places:  In the powerful movement for lifelong learning; in the growth of community volunteering and mentoring; in efforts to rehabilitate and retrain older workers; in the somewhat belated theological pastoral and programmatic efforts of churches and congregations and seminaries; in the turn to personal writing, to narrative and storytelling among elders and health professionals alike.

Gerontologists today document the continued capacity for creativity and growth among sick, frail and even demented elders.

Nursing homes and assisted-living facilities are beginning to incorporate programs that stimulate cognitive activities, playfulness, social interaction, the preservation of memory and the recreation of identity.  Programs which appear to have positive outcomes such as preservation of memory, relief of symptoms and reduced morbidity.

Despite the enormous difficulties, we are witnessing the emergence of person-centered individualized models of long term care. 

Perhaps our greatest hope lies in the sheer numbers of older people who are simultaneously pushing against the physical limits of aging and finding ways to accommodate them. Many are discovering that physical decline may be the occasion for social connection and spiritual growth.

So, in conclusion, humanistic inquiry does not really answer the question what does it mean to grow old. By offering multiple perspectives, it encourages people to live the question and live it deeply, and to embody the best possible answers.

A humanistic ethos above all is committed to nurturing, educating and supporting human development, growth and well-being not only in the increasingly healthy third age of life, but especially amidst the frailty, disease and death that still characterized the last quarter of life.

Thank you.

CHAIRMAN KASS:  Thank you both very much for very interesting and rich presentations.

Let me simply declare the floor open for questions and comments. And we have until about 10:30 and if people will keep the questions relatively short, we can all get into the discussion.

Robby George?

PROF. GEORGE:  Yes. I have a question for Professor Binstock.  First, thanks for that wonderful presentation.

PROF. BINSTOCK:  Thank you.

PROF. GEORGE:  You put a question at the end in two different ways, and I wondered if it refers to two different things or practically the two different ways of saying it amount to the same thing?

One you phrased the question how aggressively should we treat Alzheimer's Disease and another time you framed the question how aggressively should we treat people who have Alzheimer's Disease.  I can imagine circumstances in which they really would be different questions, but as a practical manner for people thus afflicted, does it come down to this?

PROF. BINSTOCK:  The former was a misstatement on my part.  As far as I know, you can't treat Alzheimer's Disease more than negligibly.  So really I meant how aggressively should we treat persons who have Alzheimer's Disease for other medical condition.

Sorry for that.

CHAIRMAN KASS:  Diana Schaub?

DR. SCHAUB:  Can you say something more about how you would answer the question that you posed about the obligations of the old?  Do you have some thoughts about it?

PROF. COLE:  Thank you.  That's a good question.

I think the primary, the virtue one might think about in old age, is the continuing commitment and care for a future that continues beyond one's own individual life.  And so obligations that we might construct based on that idea would be obligations to ensure a future, whether it's for one's own children, whether it's for other communities, whether it's environment preservation.  I mean there are many, many ways of thinking about this.

I think ideally what happens in later life is that people reach the levels of forgiveness and gratitude; gratitude for just having been here.  And that allows them to think much more freely about what they have to give, what they have to contribute.  And so that's I think why we're seeing so much volunteer work.

I'm not sure to what extent we might want to think about requiring forms of community service from older people as an obligation, say, to give back. But I do think we ought to encourage and support in any way we can the volunteer work and the contributions of this incredible cohort of people who have so much talent and so many resources, the baby boom generation that we've been talking or our contemporary elders.  We've got to find ways to encourage that contribution, those obligations.

CHAIRMAN KASS:  Gil and then Janet.

PROF. MEILAENDER:  Yes. I'd like to see Professor Cole if I can get you to think just a little more to say more what you think we need, the integration, the new you that integrates several things because I don't know if I see how it's possible exactly.  And I'd put the point this way, where I teach there is a group of older adults who meets every Thursday, you know, and I sometimes I talk to them.  And when I do, I try to picture myself 10 or 20 years from now — I think, "Do I really have to  keep growing forever?"

And on the one hand, you want submission to the lifecycle and on the other hand, you want sort of this sense that you don't wish to lose some of the good of the focus on the individual that you see growing out of the historical narrative you gave us. And I don't quite see how one continues to cultivate that focus on the individual while at the same time thinking that all of us, you know, the fundamental task is to submit to the lifecycle.  Can you say more about how one might integrate those?

PROF. COLE:  I can try.

The way I think about this is in terms of what you might call the moral and spiritual work of aging, the ongoing efforts required, I think, by responsible mature people to encounter realties of limits, and through the encounters emerge with broader consciousness, with deeper understandings.

I was just reading last night about the narrative of a nursing home patient who is 91 years old, and I'm not going to get this right, but basically she said, "Why shouldn't I succumb to the realities of aging?  Why shouldn't I succumb? I just want to sit here. I can't do what I used to do."  And then she said, "When I do this, I find new capacities coming forth. I find myself much more attuned to beauty, much more attuned to the wonderment of being alive, to that kind of sort of dialectic of physical decline and the growth of consciousness, growth of spirit that I think was valued and is valued in sort of our traditional religious commitments, but has been lost in the one-sided attempt to master, completely master our physiological function."

I don't know if that helps you, but it's the best I can do.

CHAIRMAN KASS:  Janet Rowley

DR. ROWLEY:  Well, I have a couple of comments and also a question.

I wonder if it isn't time that we begin to change not necessarily the definition of aging which you were discussing, but taking into account the fact that those of us who are older have had the advantage of better health care and that we are in general in much better shape when one reaches age 65 than one was a number of years ago. And shouldn't we just change the numerics somewhat so that you really think of people as aging and all of your statistics, 70 or 75, rather than 65, which would then really reflect the biological changes in individuals. And that would change, again, some of the figures.  So that's one question.

And the other, and I brought this up at our last meeting, I'm very concerned that the major ethical issue that we face in this country is that every dollar that is spent on very old individuals is a dollar that could be spent on young children who really are going to benefit.  And in a society of finite resources I think it is unethical for older individuals to steal resources from their children. And I think that that's not the way the question is put, but in fact that is in its bluntest terms of the way society should begin to consider this.  So you raise the question of rationing.  And I know that other countries do do this, but I would be curious as to your thought, and your thoughts also, Dr. Cole, on these issues?

PROF. BINSTOCK:  Well, they're all extremely interesting issues.  First on the use of chronological age 65 plus. You're absolutely right. It's a convention that's used in statistics, and it's largely an artifact of that age having been initially set by Bismark when he set up the Social Security system in Germany, the first one. And it was picked arbitrarily, some say, because he figured very few people would live to that age to collect.

And some years ago, in fact, one of Leon Kass's late colleagues, Bernice Neugarten, wrote in 1970 a very important article which was about the young/old and the old/old in American society.  And basically she was pointing out that chronological age did not tell you very much.  That there were a lot of people in their late 50s who resembled people in their mid-70s in terms of all sorts of characteristics and so on and so forth.

So you're absolutely right. In fact, you know, the age of eligibility for full Social Security benefits is gradually changing to 67.  Some people are suggesting that ought to be done with Medicare and so on and so forth. So it's a very well taken point.

On the question of the old stealing resources from the young and if less were spent on the old, more would be spent on the young, a couple of comments.

The first one is really simply that I don't think that's the way politics works; that if you cut back on the old, there's nothing to say it will go to the benefit of the young or to any other cause you might want. It could go to causes you might dislike very much. But the broader comment is this:  The United States is unique—well, let's say relatively unique among developed nations in its lack of collective concern in its political ideology. Our underlying political ideology is very much rooted in individualism, the markets and so on.  And so that's one of the explanations for why we were the last of the developed countries or traditionally developed countries to adopt the Social Security program.

We did it in 1935 in the midst of a great depression for all sorts of reasons, which I won't digress into.  And the last European country to adopt one was like 1915.  And I think that's a reflection of the fact, and if you compare welfare systems and so on, we don't do a great deal.

So old age became a loss leader, so to speak.  We had compassionate stereotypes of older people as frail, unable to work, deserving and unable to do much to help themselves.  And that opened the door for this construction of an old age welfare state. 

Whether we really would extend this old age welfare state to other groups such as youth, who are much more in poverty for example than older people, I think is problematic.  And I would wind up on that point by simply reminding you that the title of the so-called  Welfare Reform Act of 1996 was the Personal Responsibility and Work Opportunity Reconciliation Act, to get in the Washington jargon on it, which I think symbolizes precisely where our ideology is.  I think we had a long period of about 40 to 50 years of a more statist approach to things and now we're moving in the other direction.

And finally on the rationing.  I'm not aware of official policies for rationing the health care of older people. I know that even in Denmark, maybe Rebecca can help me out on this, but I don't think it's official there even though euthanasia is allowed, but that's not a health care rationing policy.

I have to express an opinion.  Some real concerns about the health care rationing. First of all, I don't think it would save much money, as various people have proposed it.  Certainly not the 80 and older thing that Dan Callahan proposed.  But on moral and ethical grounds I have a lot of problems with, and I guess I'll just pick one, which is I think a classic case of where the bioethical concern of the slippery slope comes into play.  Simply that if we declare one group of us as not worthy of life saving or other health care for one reason or another, then you really have to consider what group will be next.  And that concerns me a tremendous amount.  If you just take a demographic group and say "they are not worthy of...", what group will be next?

DR. ROWLEY:  Can I just respond?  I certainly understand the fact that because one would restrict funding, say, in some way for older individuals that it doesn't automatically go to youth.  But if you think if a pie of health care or health care education, when one sees the disproportionate amounts spent in older individuals within that category, there might be more pressure within the category to reallocate resources.

PROF. BINSTOCK:  I find it interesting that you regard it as disproportionate.  You spend health care when people are ill, and the most likely people to be ill are older people, by far.  I mean, you know to say it's disproportionate would be analogous to saying something like school children make up 18 percent of our population, but would you believe we spend nearly 100 percent of our educational money on them.  Well, who else would you spend health care money on except the people who are ill, and that's predominately older people.

CHAIRMAN KASS:  Thomas, do you want to comment?

PROF. COLE:  Just a couple of thoughts in response to Dr. Rowley.

First on the issue of raising the chronological age of what we think of as old age.  AARP is now, I think, touting the idea that 60 now is really 30.  The AARP is really moving towards the market and the needs really of the old.  And the reason I mention this is because the danger of universally sort of trying to move the age upward, the age of what we consider bureaucratically old age upward, is that we know that health is inversely proportional to income.  Every study I've ever seen shows this.

So that what you're going to do if you do that is people who are poor, 40 percent of people who live at or below 200 percent over the poverty line, they're going to be punished if you do that.  They're not going to be able to maintain a quality of life if you expect more of them.  It might not be so bad for people in upper income groups.

A point I wanted to make about Social Security and Medicare:  When they benefit older people, they also benefit middle-aged and younger people.  Middle income people need Social Security for their parents, need Medicare help for their parents because if they didn't have it, the burden would fall on them and it would be even more difficult to meet the needs of their children.

And in general, I worry too about pitting the old  versus young. I think it's a dangerous way to formulate it.  I agree with Bob that perhaps a more helpful way to think about it, this is what Norm Daniels does, is to think about the distribution of goods over the life course, in which case you'd spend more money on education in youth and you spend money on so on and so forth.

That's basically it.

CHAIRMAN KASS:  Ben Carson and then Paul, and then Bill May.

DR. CARSON:  I thank both of you gentlemen for that enlightening discussion. It was quite interesting.

For Dr. Binstock a question.  You rather humorously depicted the scene where you were with your mother with Alzheimer's Disease and she would derive great joy every 10 minutes as you reminded her who you were.  If it were someone else and they said that they were you, would it bring equal delight?  In other words, is there some cognition that allows them to recognize whether you in fact are telling the truth and does that go hand-in-hand with memory loss?

And the other issue for both of you, I certainly can resonate with the question that Janet asked about the use of resources, recognizing as a physician that somewhere between 40 and 50 percent of the total  lifetime medical dollars are spent during the last six months of life as an average statistic. Now, that means that a lot of those resources are used basically to extend or prolong a life that is pretty terminal at that point. And I wonder if we need to make a distinction between just using resources on people who are ill and using resources on people who are terminal?

PROF. BINSTOCK:  Well now since you asked the one about my mother, I would leave that to our neuroscientists whom you're going to meet with as to what's going on in terms of the cognition. I doubt if I told some of the other people in my mother's nursing home who I was that they would get as excited about it as she did.

On the question of expenditures on people who are in their last six months of life, there's a little bit of a misleading aspect of that in this sense:  That it implies, and I'm not suggesting you're implying it, but as it's generally used that these expenses are high cost, high tech interventions to, as you said, prolong or extend life.  You know, and prolong it beyond what is a little hard to say, since prognoses of near death except in cases of cancer is virtually impossible as far as I know from the literature.  You know, where it's been systematically studied by Joanne Lynn and others. But the misleading implication of this high tech, high cost intervention lies in the fact that 5,000 older people die everyday in this country, that is people 65 and older.  And it's a high volume activity and most of it takes place at a relatively low cost.  So that for example if you have bad symptoms and an ambulance takes you to the emergency room and you're pronounced DOA, you're a Medicare expenditure.  If you die in a nursing home, you're at least a Medicaid expenditure and may very well be at that point a Medicare expenditure, but not terribly high cost expenditure.

To my knowledge of the literature going back from Anne Scitovsky of Berkeley and forward, the money you would save if you denied high cost, high tech intervention to people who are in their last six months of life, would be relatively negligible.  So for example there was one point, and I haven't done this recently where I looked into it and I'll wind up here, if physicians know ahead of time for people 65 and older, not 80 and older, who was going to die within the next six months and would be costly and could ethically bring themselves not to treat, you would save 3 percent of Medicare, which is not a great deal for making that judgment which you can't make anyway, but even assuming you could that's what you would save.

So that's my response on that, I guess.  Tom?

PROF. COLE:  Well, the only thing I would add to that is there's a study came out probably three or four years ago that showed that people between 65 and 75 are the people on whom most high tech intervention and surgery and medical costs is expended. People from 75 on, the cost of their care is lower and the cost of their dying is lower. So, again, this is complicated and it's hard to really get a single, I think, picture on it.

Now, I really couldn't follow your logic when you asked the question should we distinguish between a person who is terminal and a person who is ill.  I guess because it too hard to know in advance, I think.

DR. CARSON:  I mean there are certain diseases that we simply do not have success with.  We know that they're going to die, and yet I personally have seen numerous instances where significant attempts are made at prolongation, and I do recognize that in many other countries, particularly in Europe, those situations are handled in a very different way.  I'm not saying that one is right or one is wrong, but saying do we need to begin a discussion on trying to distinguish this.

PROF. BINSTOCK:  Absolutely.  What I was trying to bring back up here unsuccessfully is a slide I have on Medicare Part A expenditures on coronary artery bypass operations and hip replacement by older age groups.  And what is shows is if you said no CABG operations for anybody 80 and older, you would save six-tenths of one percent of Medicare Part A reimbursement.  If you said no hip replacements for anyone 80 and older, you'd save three-tenths of one percent.

And so you'd have to go through an awful lot of things to gather up much money.

CHAIRMAN KASS:  We are almost at the end of what we've budgeted here.  I'm going to let the people who I've got in the queue make some comments.  And maybe we'll take the comments together and then let our guests respond.

Paul, Bill May and Peter briefly, and then we'll have a final response.

DR. McHUGH:  Well I have just the briefest comments of those two very excellent presentations.

For close to 50 years now I've been watching and practicing in the realm of geriatric neurology and psychiatry.  And I appreciate always these overviews that we're getting about this domain of humankind;  that's the wholesale and I'm a retailer delivering to individual patients at individual times and making individual decisions. The only thing that I want to be sure that we mention in our wholesale concepts are that sometimes we give meaning when we are not, meaning that fundamentally is negative in situations where we're both either not sure that should be or that we don't explain that this a phase towards to success.  Two points about that, two specifics about that.

I remember when in the mid-'60s there was a big theme within the care of elderly psychiatric patients to have us be deeper in our understanding of their depressions.  The depressions were to be meaningfully understood, after all age is a time of loss, a time of giving up, a time of deprivation.  And a few of us seeing these patients and in the process of hearing these things would say— but most of the old folk we know are happy. Why is Mr. X depressed?  And they would say, well, he has lost things.  And we gradually realized that a very large number of them had major depression that had come on them as an illness and that our attempts to give meaning to what was fundamentally a biological process afflicting elderly, and which were immediately amenable to various forms of physical treatment, transformed the experience of the elderly and of course transformed the care of the elderly.  Prior to that we were so wise and helpless, and after all we got more superficial and helpful.

Similarly, with this issue of Alzheimer's Disease.  Again, I was around when, although Alzheimer had described his stuff, nobody was recognizing Alzheimer's Disease.  They were calling it senility or hardening of the arteries.  And that wasn't bad.  I mean, because old gramps got hardening of the arteries and we could understand him. But once old gramp got Alzheimer's Disease, then it was a curse, a curse that people began to wonder whether he deserved stuff, whether he should be given stuff, whether his life was a burden to him and to the rest of us, instead of saying well, you know, he's just as he was with hardening of the arteries — still able to enjoy the Red Sox whenever you can.  And never did anyone say that the labeling of a category like this is a phase in the development of the science of medicine of neurobiology, and that we have to go through this phase where we have a category that we identify and are defined ways to treat it, and ultimately to prevent these things.  And we're not telling our people that, yes, it's tough.  We have to use a variety of treatments to help you now, but meanwhile in my opinion in a decade or so we're going to be able to postpone the onset of Alzheimer's Disease in those individuals who are identified with it by 20 or 30 years, so that you don't get it until you're 110.

And I think that the geriontological world has an important role to play in giving optimism to science and both our wholesale and our retail delivery of that.  And I'd just like to ask you two gentlemen who have spoken so wisely about these matters, whether those thoughts cross your minds as well.

CHAIRMAN KASS:  Would you be willing to hold and let the other comment be made?  Bill May, please.

DR. MAY:  Tom Cole, when you very gently took to task the President's Council for its equation of aging with senescence, really a reduction of aging to senescence seemed to be what you were worried about.  Because it generates a cultural response of either resistance or denial which science and technology serve, conveniently serve. You need science and technology to resist this process of senescence or you rely on it to help you avoid having to face it yourself, because you can punt them to the hospital and hope something good will happen out of it.

Now, you're not a Luddite and so you don't want to dismantle science and technology, and the question is how do you tame it so it doesn't become the sole source of meaning.  Because reportedly aging should provoke in us more than this sense of our story.

Now, in passing you talked about the importance of storytelling of the elderly.  But to what degree does that whole device of storytelling do much more than simply encourage the individualism that you already are somewhat worried about?  Sharing your story is different from having a shared story.  And the problem with a society like ours is the breakup of overarching narratives so that it's very hard to see one's own story in the setting of an overarching narrative and you get simply that New Yorker cartoon, a rise in the staircase and, whoomf, down to the bottom and there's a palm tree for a few years before nullity.  And absent shared stories, the problem of a pluralist culture like ours, absent a shared story of so often the storytelling that you get from the elderly either is patiently and politely listened to while one takes a side long glance at one's watch ready to leave after they've appropriately told their story, or when the elderly get together an awfully lot of the stories end up merely an organ recital.  So that our shared story tends to be the shared story of senescence and what might or might happen through the resources of science and technology, and that tends to become the shared story in our time.

CHAIRMAN KASS:  Would you each kindly take whatever time you'd like to respond to these comments and take a last word as you would like?

PROF. COLE:  I appreciate Dr. McHugh's retail point of view. My wife is a psychoanalyst and is quite free with her use of psychopharmacology, which brings people to the level where they can deal with what existential issues are in front of them. And certainly concern for existential meaning doesn't really dictate anything in terms of clinical guidelines. It's something always to be aware of and present for in the cases where it's an issue.

Optimism and hope.  I guess optimism and hope for me are different things.  We need to encourage hope as a virtue.  Hope is a commitment to a future in spite of the fact that things might not work out for the best.  This is a distinction Reinhold Niebuhr made. So we need not to give false optimism, but we need to give hope. And we need to hold out the prospects of what may very well be around the corner, but we need to give people hope in a clinical sense in terms of making sense of their condition at the time.

If I may just respond briefly to Bill May.  The question about whether storytelling encourages individualism or not I think is an important one.  I don't think that's always case, and I'll tell you why for a couple of reasons.

I've involved in actually teaching lifestory writing groups for seniors in a variety of settings, assisted care settings, nursing homes, community centers around the country.  And one of the things I find is that actually those groups build a certain kind of community and that the stories, they're not about the individual themselves. The stories are always about the others in one's life and that the opportunity for what Barbara Myeroff calls re-membering- she puts a dash between "re" and "membering."  The opportunity for that gives people the chance to move around the different members, the people, the characters, the families in their lives so that when they create a whole, it's not just an individual whole. It is individual, but it's socially constructed and reaches out beyond itself. And it does enable them to see themselves within a cycle of generations.

And, of course, when people belong to a faith tradition, then it's much easier for them to see themselves in a larger narrative.  But that's not often the case or always the case.

CHAIRMAN KASS:  Professor Binstock—

PROF. BINSTOCK:  Thank you.

First of all, Dr. McHugh, I lived through some of that myself, and I think your comments are very well taken. And in the 1960s in particular as I remember a so-called disengagement theory was in fashion, right?  So that it was normal to disengage and withdraw, etcetera, which has since been very much challenged.  But absolutely, I remember that well.

And then the transformation of senility into Alzheimer's Disease, which I think you aptly described as a phase along the way to getting more support for dealing with things or a phase of politicization. 

There's a very interesting article the Council might be interested in, written by Patrick Fox, which is on the whole story of how the Alzheimer's movement as a political movement got going.  And it's a good article to give you a sense of that perhaps.

And take heart on the Red Sox, although they lost last night.

As for Dr. May's comments, I thought they were extraordinarily insightful.  All I can say in closing, I had to do my personal narrative.  Somebody asked me for a journal to write what I had contributed as a political scientist in gerontology in my career, and I resisted it very much because first of all there was the implication, oh, my career is over. They want a has been to say what it was like. But then I tried to bring in some aging aspect to it. And when I settled on this title, I just wrote away, which is "Broken Down by Age and Sex: A Political Scientist In Gerontology.

It's been a pleasure chatting with you and being here with you.

CHAIRMAN KASS:  Thank you both very much.

To Council members who are generally hard to regather once we let out for a few minutes, we have two more guests. We're running about 12, 13 minutes behind.  Let's reconvene at five of the hour.  We'll start a few minutes late.

Thank you very much.

(Whereupon, a recess at 10:43 until 11:02 a.m.)


SESSION 2: AGING, DEMENTIA, AND THE PERSON: CLINICAL, NEUROLOGICAL, AND EXISTENTIAL PERSPECTIVES ON ALZHEIMER/DEMENTIA

CHAIRMAN KASS:  Could we get started, please?

In this second session of the morning we turn from aging and society in general to Alzheimer's Disease, its scientific, clinical and existential aspects.  And just as we had this morning, the attempt to treat aging both as an external phenomena and its societal wide implications and aging as the kind of life-long journey in search of meaning, so in this session we have a kind of dual perspective that we both need and require. On the one hand the recognition of this disease, which Paul McHugh calls the curse for which we need to understand its scientific foundation in the hope that clinically speaking we will be able to do vastly more by way of prevention and remedy.  At the same time we need to understand the people who are afflicted and what it means for them to have this experience and also what it means for all of those around them who interact with them.

And to help take our bearings in this dual project we're really very fortunate to have our two guests this morning.  Dr. Dennis Selkoe who is Professor of Neurologic Diseases at the Harvard Medical School and the Director of the Center for Neurologic Disease at Brigham and Women's Hospital and who is really one of the nation's leading researchers and educators on the medical/scientific side on Alzheimer's Disease.

And second David Shenk, who is a journalist and author whose absolutely magnificent book The Forgetting:  Alzheimer's, A Portrait of an Epidemic is probably, if I may say so, after President Reagan's letter, the single piece of writing that is done more to publicize and to put this particular subject and problem, on the national agenda.  The film for television that was made from this book, perhaps even more than the book itself.

Thank you both for taking time out of your busy lives to come and join us this morning.

I think as before if the Council won't mind, we can have the presentations back-to-back, though if there are technical things having to do with Dr. Selkoe's presentation, perhaps we should have those clarified before we go on.

Dr. Selkoe, please.

DR. SELKOE:  Thank you. Thank you, Dr. Kass.  I'm delighted to be here. I appreciate being invited to tell you the latest word on a saga that has absorbed me for about a quarter century now. This is my wedding anniversary and my wife reminded me on the way out the door this morning, she was actually up at 6:00, that you've been struggling with this disease, hopefully not personally although sometimes I wonder if she thinks so, for a long time and you still haven't got it licked. At the same time she told me to be home at 6:00 for dinner.  So I'm not sure about that mixed message, but we as a community are pushing ahead to try to prevent Alzheimer's ultimately and to understand it at its root cause.

So I think this is a sophisticated audience, and I will move fairly quickly, but I'll be delighted to have you stop me when things are unclear or something is controversial, which is part of the fun of this.

What I have been asked to do by your colleagues who organized today's meeting is to give you a snapshot of the biology of this disease, also it's clinical aspects in brief. And I'm delighted to share the podium with David Shenk who will tell you so much more than I can even about the human and societal impact of this disorder.  So I am going to stick to its natural history and digress only briefly about its impact on the society.

Now, if you'll look at the screen, I'm going to show you what in many ways I think is the essence of Alzheimer's Disease, sort of the central problem here.  And it's one of my favorite images.  It's a cartoon of a synapse that is firing away, providing electrochemical information from an axon at the bottom there to a large cell body at the top.  And this goes fine during life until you see what happens right in front of your eyes:  That the axon goes cold.  And in this situation we can freeze it, but in our brains we of course cannot. 

And at this moment in time we envisioned that a synapse in the hippocampus of a patient with Alzheimer's Disease no longer is releasing transmitter.  The most famous transmitter we associate with the disease is acetylcholine, but that's not the only one as you'll see in a moment.

And at its essence, I think Alzheimer's Disease is a synaptic failure and that certain synapses, certainly not all, can no longer release information from one neuron to the next.  And over time an axon like this will die and this asystematic synapse will degenerate and, indeed, the soma, the cell body, will ultimately die as well, if enough such axons are lost.

So we'd like to know why that nice bright flash of blue energy no longer is transmitted in this disorder. And if we allow this to continue, we all know what happens; everything goes dark.

Now, in the case of Alzheimer's Disease, we know this is the most common cause of dementia. The numbers are imprecise.  We often hear the term, the number 4 million, 4.5 million I've seen it said now.  I don't think we know precisely, but it's probably in the range of 2 to 4 million.  If that's true, then epidemiological evidence from other nations suggest that there should be 15 to 20 million and perhaps more likely 30 million worldwide that are afflicted not with dementia, but with Alzheimer's Disease.

Americans of African, Asian and European descent have rather closely similar prevalences of Alzheimer's Disease.  And this has been shown by door-to-door surveys; going in rural Mississippi, knocking on doors, not just obviously relying on who comes to the health care practitioner.

The disease is enormously expensive.  Probably I've had 100 billion on my slide for some years, so I'm sure the number is higher. These are imprecise estimates from the Public Health Service, Society for Neuroscience and others.  And I will not, sadly, announce today a cure or effective treatment, but I will point strongly at the end of my remarks to the possibility that we have one virtually in hand.

So quickly, some current concepts for this audience that knows these well.  Senile dementia or senility as we heard in the last session is a term used by the general public that can be defined as progressive mental failure and particularly after age 65.  And that's an arbitrary definition really coming from the Social Security Administration. And before that I understand from Otto Bismark, who understood when it was that he should institute a health care for the elderly, that was the year that they mostly died, age 65.  So ever since that time we've separated pre-senile dementia, which was what Alzheimer was writing about in 1906, from senile dementia, after 65.  But it isn't a bimodal process.  It's a continuum, and so we shouldn't think of Alzheimer's Disease anymore, of course, as a rare pre-senile dementia.

Alzheimer's is the most common of more than 20 causes, it accounts for roughly two-thirds of dementia cases in the U.S.  Again, the numbers are imprecise.  The disease begins very insidiously, usually with decreased memory and a general sense of confusion.  The rest happens slowly over 5 to 20 years. It is fatal. Sometimes that surprises people, but it shortens life expectancy by one- to two-thirds compared to someone of the same age who didn't get Alzheimer's Disease, if other things are taken into account. And, of course, the reason it's fatal is because like neurological disease, there's so much debilitation at the end of the life that the patient cannot move and really take care of their bodily needs, or they aspirate, they get a little bit of pneumonia and they succumb.  And most patients die of pulmonary complications.  Most of my patients, I've been following patients for about a quarter century, some of these patients die primarily at nighttime when they're unattended.

So the cardinal symptoms of the disease, I think, are very familiar.  Progressive loss of memory, recent more than distant, and the most striking early alteration is just not to remember a trivial event of everyday life that happened hours or days earlier; a trip to the store to buy a blouse, a phone call from a grandchild or even something more trivial than that, just doesn't stick.  And you repeat yourself, you don't recall that such a little event occurred.

There's disorientation to date, to time, to place. You just don't know quite where you are in everyday  life.

There's decreased executive function in everyday tasks; making a cup of coffee, shaving and other kinds of tasks.  Usually if we get into more complex tasks, then those examples such as repairing something, etcetera, the spouse will notice that the other member of the couple can no longer do this.

There's a decreased geographic sense.  A number of my patients have gotten lost.  Get into the car. Drive from Dedham to Newton, Massachusetts to get their hair done and end up in Albany, New York. It's a real example of a patient of mine.  And then eventually returned to their home base. They wander.

There is difficulty comprehending and reasoning about especially complex material at first.  There's an emotional ability, a paranoia in some patients and a social inappropriateness that sadly comes into the picture.

And all of these things don't happen necessarily in this area.  They can vary greatly, and they don't all need to happen.

There's impaired language, word finding difficulty in particular and eventually a picture of aphasia or dysphasia.

And all of this occurs in the absence of motor abnormalities until much later in the course.

This is the picture in many sense of Alzheimer's Disease in its early and moderate stages.

Now, the physicians of the audience, and I think many of you otherwise know that there is a complex differential diagnosis of late life dementia.  The first three disorders listed on this slide are the most common we think of in American society; Alzheimer's Disease, vascular or multi-infarct dementia and Parkinson's Disease, which is increasingly recognized as bringing dementia with it but not at the beginning.  Usually it starts with a movement disorder.

The next three disorders are less common but beginning to be known by the general public.  Frontotemporal dementia including a division called Pick's disease.  Diffused Lewy body dementia or just Lewy body dementia.  And the Creutzfeld-Jacob Disease which is, of course, a unusual prion encephalopathy likened to Mad Cow Disease and its variant in humans in Britain.

So there are many other disorders not listed here, but just as a snapshot we try to distinguish these in the clinic, but we don't have an acid test.  We don't have a simple laboratory marker that we can order up and say oh you have Lewy body dementia, it turns out not to be Alzheimer's Disease.  It's a clinical judgment.

Now the defining characteristics of the disease as we move into the biology now and into the pathology, are the following:

The amyloid plaques and neurofibullary tangles that Alzheimer first described, an inflation in the brain represented at the level by microglia activation and reactive astrocytes in the brain. Of course, a selected neuronal degeneration.  But beyond the lost of neurons, per se, there's this synaptic loss that my cartoon attempted to illustrate.  And the synaptic loss must explain the multiple neurotransmitter deficits that I won't read off for you, but only one of which, acetylcholine is addressed by an FDA approved treatment at present.  There is actually a second FDA approved treatment that many of you know, which I'll mention in a moment, a glutamate antagonist called memantine. But ironically, it doesn't actually address the point on this slide which are the deficits in glutamate that occur in the disease.

And the same time that there are deficits, there appear to be some inappropriate release of excess glutamate as a potential toxin, and therefore memantine would block that. But memantine does nothing about the fact that before that the patient has lost glutamaturgic neurons.

This is a patient whom I followed during life. A 69-year-old gentleman when he died. He was a stockbroker, he developed the disease at age 60 with a positive family history.  In the amygdala of the brain, very important for behavioral control, there were these spherical deposits of amyloid beta protein, so called amyloid plaques.  And the plaque on the left is ringed by dystrophic axons and dendrites, so it would be called a neuritic plaque.  On the right there are also dystrophic dendrites quite bulbous and enlarged, but they're not quite symmetrically arranged as they are on the left.  So these are two examples of these so-called amyloid or neuritic plaques.

Adjacent are these neurofibrillary tangles which are silver positive massive of filaments.  And you notice in the lower right hand corner of this section there are cells that are cytologically normal.  Even though my patient had 9 years of clinical disease and very likely had maybe 18 or 27 years of disease in toto.  So even at the end of life some cells are spared. And we do not understand why this selective vulnerability.  But the same could be said for Huntington's Disease, amyotrophic lateral sclerosis, etcetera.

Here's stepping back from the microscope and looking at a lower power view.  There are just enormous numbers of these amyloid plaques and neurofibrillary tangles.  The two that you saw in the last view are somewhere in here. I'm not sure which two they are. But as we step back you see more and more of these.  And they really focus on the areas you'd expect them to, that is important areas for memory for cognition.

Another image, one that has therapeutic implications is that in the amyloid plaque, and it's shown in the brown amyloid staining here, the active angry looking cells I would call them in the foreground are microglial cells.  The macrophage monocyte-derived cells in the brain that produce cytokines, etcetera.  And in this imagine there is a ring of reactive astrocytes, almost appearing to wall of the plaque.  This is inflammation, at least a brain style of inflammation. And it suggests the possibility that folks who take things like Motrin, Advil, ibuprofen and things like that. So it may have a lower likelihood of developing Alzheimer's Disease for this very reason, although we don't know that for sure.  So what I'm telling you is that epidemiologically there is evidence that certain NSAIDS (Non-steroidal anti-inflammatory drugs) taken over the counter nowadays might retard the likelihood of developing Alzheimer's Disease.  We don't know if it's because they help the process you're seeing on the screen.

Now, a few statistics.  I'm a biologist, I think, and a neurologist, but I can't fail to mention that in 1997 the prevalence was estimated at 2.32 million in the United States. In this particular publication the range was large, 68 percent of the patients were estimated to be women, 32 percent estimated to be men. I can't give you a precise answer about exactly why that is, why the gender disparity but I have some thoughts about it if we have time later on.

At age 75 it is said, and these are very precise numbers based on a pretty good study in my opinion, 4.3 percent of folks in the United States have the condition we call Alzheimer's Disease.  At age 80 that rises to 8.5 percent, 85 16 percent, age 90 28.5 percent have the diagnoses that experts call Alzheimer's Disease. Not dementia or not any of the other disorders that we're speaking of.

Incidence, 360,000 new cases per year. The range is very broad.  By 2050 this figure may rise threefold to 1.14 million per cases per year in the U.S. alone.  By 2050 the prevalence may rise 3.7 fold to 8.64 million from the current prevalence that I mentioned above of 2.32 million. But the range is enormous again.  Very hard to estimate.  All of this, of course, predicated on no meaningful treatment beyond what we can prescribe today.

An intervention that delays mean age of onset by five years, which has been likened by the risk calculators to about a 50 percent risk reduction, would reduce expected prevalence by 1.2 million after just ten years if that intervention was on hand, and reduce it by 4 million after 50 years; that is by 2050.

And one that delays onset by two years or so, it slows the course of the disease and makes it a little bit later, that would reduce expected prevalence by 600,000 in the United States after 10 years, 2 million after 50 years.

These are some curves that show the striking rise in prevalence of mild, moderate to severe and total Alzheimer's Disease by one set of data.

Public costs are enormous.  2010 Medicare costs, you know these numbers perhaps, they rise 54 percent from the current figure of 31.9 billion in 2000 to 49.3 billion.   These are Medicare costs.

In Medicaid expenditures, primarily for residential care of dementia.  In fact, this figure is exclusively for residential care of dementia in patients who otherwise do not have physical support for this, may rise 80 percent  to 33 billion.

At present the public sector, from what I read, is estimated to finance a small portion of Alzheimer's Disease care, 13 percent for community outpatient care and 34 percent for institutional care.

And then the remainder is the cost putatively to employers or to the private sector. U.S. businesses are said to bear costs in these ranges.  So for example, business costs for workers or caregivers of people with Alzheimer's putatively costs employers 26 billion going to 36 billion in 2002 according to these earlier data. Business costs for health care and health care research for people with Alzheimer's Disease borne by employers, maybe up to 24 billion.  The total business costs 61 billion.

These numbers then add to the governmental costs to give a figure upwards of 100 billion annually.

And the last statistic I'll bore you with or share with you is this set of graphs comparing the prevalence of mild disease, which is in the darker symbols, and moderate plus severe disease grouped together in the lighter symbols if no treatment becomes available over the next five decades.  So these are the kinds of prevalence numbers going up to 10 billion or maybe 15 billion if nothing intervenes.  The second set of bar graphs is if you had therapeutic that delays onset of the disease by maybe 6 or 7 years.  Then you'd still have the same spread of mild versus moderate to severe, but the total numbers would be done.

This third set of graphs is if you had a treatment that delayed disease progression.  Onset occurred still in the 60s and 70s but it didn't go as quickly. So you had more mild cases as compared to the total. But the total cases would ultimately accrue to similar levels. And this is the case that I think will actually occur.  And the rosiest scenario that you have both delay disease onset and a slower progression so that both mild cases occupy more of the total population and the total numbers are lower.

So let's return to the biology.  Current medications I was asked to speak of briefly.  Symptomatic drugs are the acetylcholine inhibitors.  You see there are brand names here, which is how the public generally speaks of them.  The new glutamate antagonist, just one of these approved by the FDA in January or it came on the market in January, Namenda or memantine.  Behavior modifiers of course, anti-psychoticsm tranquilizers, anti-depressant and a variety of other agents that potentially help with the very difficult behavioral symptoms that my families tell me are the most difficult part of this far beyond the memory impairment.

Potentially disease swelling agents that are currently available include antioxidants.  Most of my patients take vitamin E, 1000 or 2000 units a day. Perhaps anti-inflammatories either because they reduce the inflammatory cells in the brain or perhaps because they actually interfere with the amyloid problem that I'm going to explain to you in a moment.  And maybe cholesterol lowering drugs have some beneficial effect. But we're not ready actually to say this in a more public forum than this one, that is I can't write that anti-inflammatories and cholesterol lowering drugs should be taken by patients in America universally because they have plenty of bad side effects. And I don't know for sure that they slow Alzheimer's Disease.  Sometimes I use them anecdotally in patients whom I think I can follow very closely.

I think this is pretty much it.  This slide summarizes the principle therapies we have available.

So let's talk about the biology.  The diagnostic regions of the disease are those that Alzheimer described.  So this is sort of an operational definition of Alzheimer's Disease.  The condition contains neurofibrillary tangles inside neurons that are composed of altered forms of a particular protein called tau.  Whereas the amyloid plaques, which are really outside cells and between the cells are composed of 40 and 42 amino acid long amyloid beta-protein, so named by George Plenner who I think will be viewed ultimately as a sage in this field.  Sadly he died of another amyloid disease of the heart some time after he discovered the amyloid beta protein in 1984.

Now Alzheimer's Disease is one of a family of diseases potentially, and this isn't a terribly exciting slide for people like myself who study regeneration, it may mean less to this audience. But the point is it looks like diseases like Parkinson's Disease, ALS, Creutzfeld-Jacob Disease and Huntington's disease have a common thread with Alzheimer's in that there is a misfolding of a normally well folded protein and it aggregates in lesions in neurons. And without going into further detail, the details are not really critical here, it looks like things we learn about how amyloid beta protein or tua protein misfolds in Alzheimer's may help us with understanding Parkinson's and ALS.

Now this image is a bit of shocker.  This is a section of frontal cortex from a patient.  And the bottom of the slide, which is devoid of these brown lesions is the white matter of the brain.  Everything above where my cursor is now is the gray matter of the brain.  In simple terms thinking area of the brain.  And these are a zillion amyloid plaques.

This patient was 12 when he died.  So this is remarkable.  It is only one human condition which leads that leads to such an profound Alzheimer's like picture, and I think a number of you know what it is, it is Down's Syndrome.  So it turns out that this has been in an enormously powerful clue to biologists that being born with an extra copy of chromosome number 21, and having three copies instead of two, brings not only the Down's Syndrome, but brings an almost invariant occurrence of Alzheimer's Disease, but already as early at the microscopic level as age 12.

This patient had he lived longer, if he had died from cardiac reasons unrelated to this pathology, would likely have experienced some fall back in his learning ability.  Although he was retarded from birth, he would have certainly been able to learn things. But at 20, 25 I suspect he would have not been able to get on the bus and go to a sheltered workshop and do what he wanted to do as well as he did when he was 15.

Now, what is this telling us?  It's telling us that the beta-amyloid precursor protein which gene is encoded on chromosome 21 almost certainly will turn out to be central to the pathogenesis of the condition we call Alzheimer's.  So I don't want to overwhelm you with a lot of biological gobbledegook but I will tell you that this molecule is the favored therapeutic target of biopharamaceutical companies worldwide right now.  I hope they don't have it wrong. I don't think they do personally.  If they are wrong, then I am big trouble for sure. But it appears that understanding how this molecule is handled by brain cells might lead us to treatments and ultimate prevention.

Why?  Because the amyloid beta-peptide is a small fragment embedded within a 770 amino-acid precursor protein.  It's a receptor like molecule, like the insulin receptor. This is inside a cytoplasmic tail.  This part waves in the breeze and it sticks on the outside of the cell.  There's a single transmembrane domain.  And in 1992 my lab discovered that there is a processing situation that goes on normally in all of us throughout life.  Beta-secretase cuts right at the beginning of the red box here, and that's followed by a enzyme called gamma-secretase in the middle of the transmembrane domain curiously popping out the amyloid beta-peptide.

It is just this peptide, this little red box, that makes up the myriad plaques in the patient's brain.  The rest of the protein is dispensed with, for whatever reason.  Of course this protein has a normal function, and I'm not going to speak about that today. It appears that its involvement in Alzheimer's Disease does not relate to its normal function, but relates to a so-called toxic gain of function when these enzymes make too much A-beta or something else goes wrong.

So I'll ask you to try to recall that beta-secretase and gamma-secretase are two naturally occurring enzymes in everyone's brain that dice up the amyloid precursor protein to release amyloid-beta.  And that happens in in-utero and beyond.

So this has given rise to hypothesis that Alzheimer's is a syndrome caused from a chronic imbalance between A-beta production and A-beta  clearance that leads to cerebral accumulation of A-beta, and particularly a 42 amino-acid form of A-beta called A-beta 42.  The imbalance we thought could be caused by numerous distinct genetic alternations and perhaps by environmental ones.  But if you ask me what you can do to protect yourself environmentally, there's nothing I can recommend with any clarity. 

Head trauma is a known environmental risk factor.  So I'll ask you not to go to go out and beat yourself on the head. But beyond that I can't tell you about a dietary factor or sun exposure. I can only tell you to choose your parents carefully. Beyond that, we really don't know much about environmental alterations.

Now this syndrome has been enormously controversial and it's made it to The Wall Street Journal recently where it's been said that those, like myself, who tout this hypothesis are squelching other areas of research. So we can debate that later on.  I'm not going to digress to talk about that, but Richard Hodes the Director of the NIA I think subsequently wrote an article to The Wall Street Journal saying that he has evidence that a large amount of taxpayers' dollars were spent on other theories besides this one.

So, as Schhopenhauer said, all truth passes through three stages.  First it is ridiculed.  Second it is violently opposed.  Third it is accepted as being self-evident.  We're not yet there with the amyloid hypothesis, but I'm beginning to feel a sense that perhaps this is now being accepted as oh, yes, well that's sort of obvious that this build up would be bad news for memory function.

The basis for saying that is based on this concept.  Studying rare forms of the disease, familial Alzheimer's, and understanding the genotype to phenotype relationships and in very brief summary, there are four chromosomes, four genes that the field agrees are predictive of getting Alzheimer's.  Three of these, the first, the third and the fourth are inherited as very aggressive dominant traits.  If you're born with one of these mutations, it's almost definite that you will develop Alzheimer's, and you will do in your 40s and 50s.

The second trait listed here is a so-called polymorphism.  That is, Apolipoprotein E comes in three variants in the human population, E-2, E-3, E-4 and Allen Roses at Duke University discovered with this colleagues in 1992 that inheriting Apolipo E-4 with one allele from mom, for example, or dad gives you a two to fivefold increased likelihood of Alzheimer's. If you inherit allele from both mom and dad you have a five to 15 fold greater likelihood of Alzheimer's than you do not have the E-4 allele in your genome.

So this became to my knowledge one of the very first examples of a natural polymorphism in our population, in the human population, that you could test for genetically.  But I think everyone in the field recommends against testing for this until we have a treatment. That way we could couple it with the message you have an E-4 allele.

Now, a different example is presenilin, which has been enormously instructive and there are mutations in presenilin, now 146 of them.  You see a few of them scattered in this diagram of presenilin, which winds its way in and out of a membrane eight times.

This mutation here, this cartoon mutation, represents a mutation that causes the most aggressive form of Alzheimer's known in the literature.  A young woman developed this at age 18 and died at age 33. So that is absolutely remarkable.

So mutations in this gene are extremely malignant in terms of causing Alzheimer's.  How do they do it?  My lab and several others have we think figured this out.  If you look closely at the sequence, amino-acid sequence of the presenilin molecule which winds its way in and out of the membrane eight times, and you enlarge this part of the molecule, there are two Ds, the single letter code for apartates in the middle of the sixth and seventh transmembrane domain.  What does this mean?  We did a bunch of experiments and so did others to suggest that these two Ds that are circled in red are crucial for presenilin when mutant to cause Alzheimer's Disease.  And the way they do that is shown here.  The 2 Ds or aspartates coordinate with APP.  And they actually represent the cutting machine that cuts APP  to release amyloid beta peptide.  This is the so-called gamma-secretase reaction, the second of the two cuts that I mentioned.

In a nutshell then, presenilin appears to be the long sought gamma-secretase.

Now, there's a very interesting biological problem with addressing gamma-secretase.  And that is that as Gary Sturhl and Iva Greenwald showed, if a presenilin molecule on the fly is knocked out or dysfunctional, the fly gets a very abnormal wing, the so-called notched wing.  And nerve cells and the nervous system of the fly are disordered. 

Now what's going on here is that presenilin is not only a bad guy leading to the most aggressive form of Alzheimer's, but presenilin is necessary for life. It's necessary for the development of the fly to have wild type wing rather than a notched wing.

In summary, presenilin shown in purple here uses its two intramembrane aspartates by the letter D to cleave a protein called notch.  Its name was given to it by a biologist many years ago because absence of notch function leads to a notched wing.  And so presenilin is necessary for notch to be cut in the membrane of the cell.  This part is released and does good things inside the cell, in the nucleus. This is necessary for life in all multicellular animals on the planet. And therefore this mechanism was conserved during evolution.  Unfortunately, an alternate substrate called amyloid precursor protein gets processed essentially identically to notch.  This doesn't seem to make much difference when many individuals or almost everyone died shortly after reproductive life. And only when this cleavage, which does occur throughout life and pops out the blue box here, the amyloid beta, when that accumulates over a lifetime, there is a risk of developing memory failure.

So from my perspective biologically I feel you're looking at why it is that Alzheimer's arose in the human population. Now we'll see if this turns out to be true. Only therapy with anti-amyloid drugs can prove this hypothesis.  But I think that you need this machinery for life, for sulfate determination in metazoans and a byproduct of it is that you also generate amyloid beta peptide throughout life, which didn't make much difference when most of us died in our 40s and 50s.

Now I won't go into further scientific detail.  If you produce A(Beta) at 1.2X compared to 1.0Xp normal and you degraded at 1.0X, you're going to accumulate it over life and it's going to aggregate, which is what it did in that Down's patient already at age 12 years.

We recently figured out what that aggregation does to brain cells, to memory cells.  We studied the aggregation of A(Beta) is a simple culture system. The black lines here represent the actual A(Beta) peptide, A(Beta) 42.  This is the main beta, but if you have a presenilin mutation in the cell, you make doublets and triplets and quadruplets of A(Beta). It starts to gum together.

We've taken advantage of this phenomenon in a simple cell and harvested the medium of these cells and injected them into rats. What happens is that the rats have trouble in a task we taught them.  We've taught the rats to press lever A two times, go to lever B and press it six times, return to lever A and press it ten times, go to lever B and press it 16 times according to the quadratic function X square minus X.  So these rats do algebra.  And if you give them a microinjection of the lateral-ventricle of the brain of this doublet/triplet rich form of A(Beta) from our cultured cells, they do what you see in the dark symbols. They make switching errors.  They switch to lever B too soon or they perseverate. They remain on lever A not too counts, but three counts or they remain there for 16 counts. They go all the way up, by the way, to whatever the number is, 56 I think it is, and then they do down by themselves down to two again.  They learn how to do that. So this is a very sophisticated tests designed by Jim Cleary and Karen Hsiao Ashe, my collaborators at the University of Minnesota.

If you give them the singlet of A(Beta), the monomer, there is no significant effect on switching or perserveration errors. 

Why do I tell you this?  Because I think it's evidence that this little peptide when it mounts up in doublets and triplets is trouble.  And this interferes with the memory of a learned behavior in the hippocampus of a rat.  Whether this does this in a human we simply don't know.

So let me summarize and tell you where we are therapeutically.  This cartoon illustrates one way of thinking about the Alzheimer's riddle.  That cells in the brain make the amyloid-beta peptide, which is simply diagrammed as little sheres here.  Blood cells make it.  Big neurons on the left make it.  And by the time that someone who is destined to get Alzheimer's Disease at 75 is 55, we suspect and there's evidence for this that there are these diffused plaques, cloud like amyloid-beta peptide clusters.  And an axon that happens to be passing in the vicinity here, and there are many axons of course in this vicinity at all times, is okay.  This is not just hallucination, but Brad Hyman at the Mass General Hospital is showing this kind of phenomonology by beautiful microscopic studies.  But if you fast forward 20 years the image looks like this. And again it's supported by electron and microscopic data. The plaque is more robust or larger, the amyloid-beta has aggregated into chain like structures, doublets, quadruplets, etcetera, that are probably trouble.  The microglial cells, which are inflammatory cells, move into the fray and an axon is now inflamed or damaged at this point.  It probably can't conduct information very well.  This is the synapse here that I cartooned in my first slide.

I want you to know that Bill Klunk at the University of Pittsburgh has been, I think, the first to publish the most striking images of actually seeing the amyloid in the brain of a living patient.  So here a control 75 year old woman, and here a woman with AD at the same age or similar age.  The red and yellow signal represents Klunk's ability to use Pittsburgh Compound-B to actually image her amyloid deposits in the brain.  You can't see them plaque by plaque, but you can see this total signal.  And the signal to noise ratio is better with his compound than the current best positron emitting dye that we use, fluorodeoxyglucose, which has been used for more than a decade.

So I'm very excited about his work in this regard. I have nothing to do with this research. And I think ultimately many of us will want to get an amyloid scan once this is fully validated and, of course, approved for general use.

So let me end by telling you where we stand on the treatment modalities, that is treatments beyond those I listed earlier, which were symptomatic.  These we hope will ultimately be disease modifying.

We would like to inhibit the A(Beta) generating enzymes, the beta and gamma-secretase.  And many pharmaceutical companies are working hard on those targets.  A gamma-secretase inhibitor has been tried by Eli Lilly Company in human trials and the results were announced in April. There were no spectacular results.  It was simply a short trial showing that amyloid protein levels fell in the blood, but they happen not to fall in the spinal fluid in that study.  So they need to go back and figure out why that was. My guess is because the drug didn't penetrate the brain sufficiently.  That's the only gamma-secretase trial in humans so far that's been discussed. I think actually both of these are good targets on theoretical grounds, and we'll see whether they can actually reduce amyloid and make a difference in the clinic.

This is the approach that has caught the attention of many people. It is the idea of actually vaccinating against Alzheimer's.  You give the amyloid-beta peptide by a shot a deltoid muscle. The patient makes antibodies and the antibodies circulate throughout the blood stream and some of them get into the brain. And I'll show you an image of that.

You could also inhibit the inflammatory process and interfere with the toxic response of neurons, but that may be too little too late.

So the amyloid vaccine, a work that I had nothing directly to do with, was pioneered by a fellow called Dale Shenk, and saline injection into mice that develop Alzheimer plaques.  Over six months that saline injection did nothing to prevent the amyloid build up. But injecting the amyloid-beta peptide, the molecule that I am today claiming is a principle bad guy in Alzheimer's, led to a dramatic clearing of these deposits in a mouse.  Many further studies were done, including with monkeys, and this entered human clinical trials.

There is good and bad news.  The good news shown here was that a patient who died for another reason, from a pulmonary embolus, had skipped areas in her brain where there the wall of amyloid plaques suddenly was interrupted.  And in another area of the brain, the only thing that was left were little microglial cells engulfing amyloid.  A very similar picture that was seen in the mouse model.

So it looked like amyloid was being cleared.  There are now five patients who have succumbed from natural causes post an amyloid vaccine trial.  And in each case, there have been these areas where there is less amyloid in the brain.

And the last slide is does this matter however clinically? This is a small subset of 30 subjects in particular published by colleagues from Zurich, Switzerland of a larger trial of 375 subjects.  The full data have not yet been released, but they're apparently going to be released on July 22nd in Philadelphia. But the data that's publicly known is that in these 30 subjects in this amyloid vaccine trial, if you develop no antibody, no rise in antibody levels in your blood, your mental status examine fell over the subsequent six months. If you developed an intermediate increase in antibodies, you didn't as much of as a fall.  If you a strong antibody titer there was essential no change in this commonly used test, MNSE where we ask, for example, to tell us your place of birth, your date of birth and to remember items.

And the accrual of cases of moderate to severe Alzheimer's Disease or patients remaining with mild disease didn't fall as much in the dark symbols than the patients who had strong antibody responses.

So, this is a complex riddle. I've given it perhaps more detail than you cared to hear, but an overview of the biology and clinical aspects of the disease.

We don't yet know where the leading hypothesis will turn out to bear fruit, but we do know that it's in clinical trials and patients have been enrolled. So probably this group should know in three years or two years whether this has merit or not.

Let me stop there and just hope that there's time, perhaps after David speaks, if there's any questions.

CHAIRMAN KASS:  Thank you.

Dan Foster?

DR. FOSTER:   Leon, could I just ask one technical question.

You didn't mention the possible target of the alpha-secretase here which will clip through the beta peptide there, did you, or maybe I missed it when it—

DR. SELKOE:  Right, I did not.

DR. FOSTER:  And I think there are sort of two advantages. I mean, I've tried to follow your work.  Not only would you then stop the production of the amyloid-beta peptide there, but that maybe the soluble remainder of the precursor protein supposedly has anti-protective effects that are not released when you use the beta gamma-secretase.  So I just wondered if you'd given up on the idea enhancement of the activity of the alpha-secretase, this—it's another peculiar enzyme.  It's called an atom enzyme. Could you just comment very briefly about that, because I thought that maybe you would focus on that more than you did about the immunization here.

DR. SELKOE:  You're absolutely right.  That is a very valid target and I didn't focus on it primarily in the interest of time because I felt I had said it and said enough. 

The alpha-secretase target has recently been validated in mice by over expressing alpha-secretase, atom 10 in particular, one of the atoms. And showing that you reduce the amount of plaques in the mouse's brain. Just like inhibiting beta-secretase and inhibiting gamma-secretase have also been shown to reduce plaques.  So your point is absolutely correct. 

The reason I haven't focused on that as much is because alpha-secretase activators are not as much in the forefront in the biopharamacutical industry and they're, after all, the ones who are going to do the chemical trials and deliver the therapeutics.

There are ways to do this in the lab, but chronically stimulating alpha-secretase to both cleave A(Beta) in the middle to prevent its production and to provide a protective effect, we wonder whether that will be readily achievable pharmaceutically and whether that will also have side effects to chronically stimulate alpha-secretase.  But I think there're ways of doing that, and I like that way of going about it.  And there's a very nice paper just out, The Journal of Clinical Investigation that suggests it's conceptually possible.

CHAIRMAN KASS:  Thank you very much.

David Shenk, good to have you with us.  We look forward to your presentation.

MR. SHENK:  Thank you.

This is a little awkward for me because Dr. Selkoe has just said what I was pretty much going to say.  A terrible overlap here.  No, I'm going to switch gears quite a bit.

Thank you.  It's such a honor to be here. I particularly want to thank Dr. Kass for his kindness in our conversations leading up to this conference.  And if my book has shed an ounce of light on the issues at hand for the people at this table, it is indeed a high honor and I would say a lifetime of satisfaction for a writer.   And I'll do what I can to contribute to today's conference.

Let me first put my expertise and training in context for you.  I have no expertise; I'm not an expert and I have no training.  I'm not a medical doctor, although I have been accused many times of having the handwriting skills of a doctor.  I am not a molecular biologist or a geneticist.  I can assure you that I did go to college; that's about it as far as training, high education.

It is the conceit of my work as a writer, as a generalist, that perhaps outsiders can also bring something to these highly complex discussions.  And sometimes maybe even add a little something that the insiders are a little too inside to notice.

I was dragged into this subject not by any family experience, but by a conversation I overheard about six years ago now over lunch.  And I don't want to spend too much time on it, but it was concerning a middle-aged couple in their 50s. The man was taking care of his wife who was in the middle stages of Alzheimer's Disease I would now recognize.  But she had gotten to the point where she didn't know who he was anymore.  And that single fact dragged me into the subject and has not let me go.  It just raised so many questions and I found in subsequent weeks and months that as I started to try to answer some of those questions, that many, many new questions popped up as a result.

And, of course, I do not want to take anything away from the insiders, the valuable specialists of this world starting with the amazing army of Alzheimer's researchers and scientists represented here by the extraordinary Dennis Selkoe.

When I first started this research I realized that there might be a book here.  I thought I would probably learn about scores of extraordinary scientists who were going to hopefully come along and rescue us from this disease. And I was so wrong about that.  There are thousands of these people.  It's really an incredible thing to witness the energy that is going into stopping this disease.  And I think Dr. Selkoe has helped to give us a glimpse of how enormous even slowing it down would be.  But if we were to stop it, just to give you a taste of this, in the next 50 years we're talking about tens of millions of lives worldwide who would be spared, and not billions as you've seen—as you've learned today, but trillions of dollars.

Now as important as these scientists are, there is another even larger group of heros to me in this story, and that is the caregivers.  And I'm speaking of the family caregivers and the professional caregivers, and the people who support that community. And they will be best represented in this next session, your next session, by Geri Hall.

I want to deliver what I see as a preamble to Dr. Hall's remarks at a very general level, not getting into too much detail. Geri Hall is one of the most knowledgeable people I know on the details of caregiving and the surrounding legal concerns.  So I'm going to provide an overview, hopefully in preparation for her remarks.  And I'm going to focus on five central challenges. I did not bring any slides.  I apologize.  Five central challenges that I think are highly relevant to your work as an ethics panel.

Number one, the slow fading away of the patient and the threats to dignity and self.

Number two, denial and avoidance by patients, family and friends.

Number three, the shifting nature of the disease.

Number four, how Alzheimer's Disease can mask and therefore complicate other medical problems.

And number five, Alzheimer's Disease is a wedge in already fractured and dysfunctional families driving them further apart and complicating care.

So now let me address each one of those concerns in a little bit of detail. And there's a lot of ground to cover, so I'll move rather quickly.

First to start with, the most well known characteristic of Alzheimer's Disease, the fading away.  The existential nature of this disease terrifies patient and family like no other.  We're talking about a condition that essentially erases the thinking part of the brain very slowly over the course of ten years time, although we've just learned that the biology of it actually starts quite a bit before that, leaving a physical shell of a person.

Let me very briefly give you a firsthand feel for what this is like. Throughout my presentation today I'm going to occasionally read remarks straight from caregivers that capture the spirit of this disease better than I ever could.  This first testimonial is from a caregiver living in Washington state.

"This was the second day of near total confusion for Ed. He was back pretending to drive the locomotives and imagining that I was one of the crew. I was asked to call the dispatcher and find out how to get back to Walla Walla. I drove him around town for two days to help him get his bearings. When he finally realized he was in Walla Walla, he was distressed at being so confused and told me he didn't know what he would do without me.  But then half a minute later he was back in a neighboring town or up in the mountains or who knows where.

Periodically he asked me what Arda was doing and if I heard from her and telling me what a special person she is to him. I am Arda.

This afternoon we went for a ride and then stopped for a bite to eat. Our bill was $13.00, which Ed insisted on paying. He pulled out two 50 dollar bills out of his wallet.  I told him I had the right change, so I took the bill and paid it. 

When we pulled up under the carport at home he said 'I'll wait here.  What are we stopping here for?'  He said he'd forgotten.

He's at least cheerful and relaxed, much like a little child waiting to be told what to do.  It could be worse."

Well, as many of you no doubt already know, it is often much, much worse. This is a very gentle dip into this world.

Caregivers are dealing simultaneously with the emotional pain of watching their spouse or parent fade away, trying to manage the immense confusion and frustration of the patient and the physical burden of having to make up for lost functioning 24 hours a day, 7 days a week.  Extreme stress is a guaranteed part of this job and caregiving itself quite often leads to clinical depression and other stress related health problems.

One desperate and ultimately unanswerable question that seems to constantly gnaw at caregivers is this:  How much is left inside that head?  What does he or she truly understand right now?  What can he still remember?

It's impossible to ever know for sure and even harder to keep up with since the disease is always progressing, always getting worse.

Two more aspects of the caregiver experience with respect to fading away:  A sense of deep humiliation which quite often first bears down on the patient.  The shame of fading away, the shame of not being able to do what they have been able to do for so long. And then that humiliation paradoxically passes to the caregiver.  The shame of having to take care, the shame of having to take care of someone who is losing themselves and, arguably, losing their dignity.

We're talking about a spouse or child who gradually has to take over their loved one's dressing, bathing and toilet functions:  Essentially having to treat this adult figure as a child.  This is obviously excruciating and exhausting.  And coupled with that is the issue of honesty, or more precisely as I learned in observing caregivers, talking to them, learning how important it is to not be honest.  After we've spent the first half or two-thirds of our lives trying to be honest at all moments, now is the time to learn to not be honest.  It's a lesson that every caregiver seems to experience early on.  And to illustrate this, here is a caregiver from New Hampshire speaking directly to that issue.

"I have really struggled with the honesty issue.  One thing that I have learned is that the best decision for me is not always the best decision for my mom. At first I decided that she should know just why we were having her stay with us when she was begging to go home. But she was in a strong denial and could not reason.  She became extremely angry and the entire family suffered from my honesty.  She suffered most of all.

"What do you say to someone who sits on her bed and says that she has never stayed out overnight without letting her parents know where she is?  What do you say to someone who thinks she is a teacher and if she doesn't get home or into her classroom, there will be a whole class of children left unattended? What do you say to someone who thinks she has no money to pay bills and will lose everything she owns if she doesn't get home to a job that you know she has been retired from for years?

"I couldn't find any reason for telling her over and over that she has a horrible, terrible degenerating disease that was making her feel the way she does.  I found as the days went on that she seemed to become less anxious if I tried to just listen and have empathy with what she was saying and feeling.  Sometimes saying nothing was better than anything I could say.  Telling her that I would take care of some of these things put her a bit more at ease.  It may have felt better for me to verbalize the facts, but comfort and security is what she really needed, not the truth about her having this darn disease. The truth won't change things for her in any way."

I'm going to move onto challenge number two now, denial and avoidance.  And as you can tell, these things overlap quite a bit.  This is just a way to organize my thoughts.

Alzheimer's Disease seems almost to beg those who come into contact with it to at first ignore it or deny it, or in some other way sweep it under a rug somewhere. This applies to patients, family members, friends, neighbors, even family doctors believe it or not.  I should say some family doctors, no disrespect to the ones here or to the many that truly do "get" this disease.

No one wants to be near this disease if it comes too close and our first impulse is often to deny.  I believe there are two parts to this phenomenon.  The first part is a rational response to a terrifying truth.  Everyone who has ever heard of Alzheimer's Disease is, rightly, terrified of this. I got into this business because I was terrified of it.  Because for those who are actually facing a diagnosis, it is overwhelming.  Psychologists will tell you that in certain instances denial is actually an extremely healthy psychological response.

Aside from the trauma of diagnosis, though, there is a part of this that goes way beyond the rational fear of Alzheimer's, and that is the stigma that is unfairly associated with this disease.  Friends and neighbors actively shun people after their diagnoses.  Caregivers will tell you over and over again how even close friends just vanished from the scene entirely, immediately and entirely.

Family members are afraid ashamed to use the word Alzheimer's.  To this day, ten years after Ronald Reagan's public announcement that he had been diagnosed, very few obituaries contain the words Alzheimer's  or dementia.  And as a recent illustration of this Estee Lauder, I don't know how many of you know this, died of Alzheimer's Disease.  She had it for quite some time.  She was very well cared for, obviously.  Her family has donated tens of millions of dollars to fighting this disease and are, obviously, to be commended for it.  But I just find it absolutely fascinating that when she died, they did apparently everything they could and successfully so to keep the words Alzheimer's and dementia out of her obituaries. It's virtually unknown that she had this disease.

I believe that this stigma, this taboo comes from a vast ignorance about what the disease actually is. Because it's in the brain and because you can't see it with your own two eyes, people get the impression that it's a mysterious mental failing or old people just going loopy.  People do not get that this is a disease, pure and simple.  Something is going wrong with the chemistry and biology in the brain, as we've just learned so much about.  Just like something goes wrong, although in a different way, just like something goes wrong in skin cancer or in diabetes or in heart disease.  And I would say we communicators have not done a very good job of explaining the basics that malignant protein fragments called plaques and tangles cause the disease by killing neurons and stopping synapses in certain specific regions of the brain.  It always starts in one region of the brain called the hippocampus which is responsible for the formation of new memories, which is what explains the early symptoms of the disease, and the plaques and tangles always very predictably travel to other regions of the brain so we can know what's going to happen.

I believe that if people understood the basic outlines of this disease, we could take back some, not all, of the power that this disease has over us.  And let me just add that this is my personal mission with regard to this disease.  And in my talks around the country this is how I see my small role as trying to help ordinary people understand the basics of this disease so we can get past the stigma.

Challenge number three, the shifting nature of the disease.  From the caregiver's perspective, Alzheimer's Disease is not one disease.  It is an exhausting ever changing storm.  Consider the trajectory of this illness.  You begin with someone who looks, sounds and feels normal except for the occasional strange memory lapse.  At the end of this disease, let's say five or ten or 15 years later—it varies quite a bit, the average is about 10 years—the patient cannot think, cannot move much and finally cannot swallow or breath.  In between there are a thousand subtractions.  Over months and years the ability to form new memories slowly deteriorates, the patient's facility with words shows signs of breaking down, math becomes a problem, tasks and chores become difficult.  So that's the beginning of the disease. So the family adjusts to this. They maybe get some help, perhaps shift work schedules around, make some plans.  But then the disease marches on.

Following instructions becomes impossible.  Conversations become difficult. Frustration and tempers rise.  Really a whole new set of symptoms. Again, the family adjusts to the new conditions and the disease keeps moving.

Older memories start blurring now.  Earlier it was just the ability to form new memories, now it's the connection with older memories.  Serious confusion and paranoia set in. The patient wakes in the middle of the night and wanders off down the street, an entirely new problem. Again, the family adjusts to new challenges which is a paradigm for them.

Some more time passes now.  Now the patient cannot get dressed by  herself and is incontinent.  Again, the family has to adjust.  A whole new set of physical burdens and emotional ones.

So you get my point. I've run out of words for how distressing this disease is, but it's worth noting that while any particular stage of Alzheimer's  is devastating in and of itself, and we would be here having plenty to talk about if it was just any one of these stages, the way it morphs from one condition into another is a challenge for even an energetic and well-trained caregiver.

Challenge number four, how Alzheimer's Disease can mask and therefore complicate other medical problems.  And I think we got a good taste of this this morning with the two presentations.

Let's say some 90 percent or so of Alzheimer's patients are over the age of 70.  And so it is a given that these people are going to have other serious medical issues to contend with. That leads to this question:  How do you detect, explore, diagnose, treat and monitor a medical condition in someone who cannot communicate very well or at all?  How can you treat a patient who can still experience pain and discomfort but can't discuss it and may not even be able to even vaguely understand what it is they're feeling?  Dementia masks and inevitably complicates every other potential, emotional or physical distress associated with old age.

To get a small feel for the complexity of this, consider a relative modest list of medications taken by one Alzheimer's patient which her caregiver allowed me to reprint in my book.  I'm sure I'll mispronounce some of these medications.  Propulsid, 20 milligrams twice a day.  K-Dur, 20 meq tab once a day.  Synthroid, .025 milligrams once a day.  Imdur, 30 milligrams once a day.  Procardia XL, 60 milligrams once a day.  Prilosec, 20 milligrams once a day.  Aspirin, 325 milligrams once a day.  Betagan eyedrops, 2 drops for each twice a day.  Transacon faracon once a day. Paxil, 30 milligrams once a day.  Nerontin, 10 milligrams once a day.  Nizoral cream, once a day.  Ditropan, five milligrams once a day.  Extra strength Tylenol, one a day.

As I said, I suspect this list is rather modest compared to some. Imagine a list twice as long with drugs that might be interfering with one another or causing a combination of unpleasant side effects.  Imagine all the ailments that go undetected in the first place or are misdiagnosed and subsequently mistreated thanks to all the confusion and miscommunication.

We in the Alzheimer's world are very often quick to point out the one saving grace of this disease, which is that it causes no direct pain.  And I'm very guilty of this.  While that is true, it arguably I think misses the point.  And I'm correcting myself here. I'm going to try to do better in my talks.  It's a simple fact that Alzheimer's frequently leads to needless pain and discomfort because of how the disease complicates every other aspect of care.

Finally, challenge number five.  Alzheimer's is a wedge in already fractured and dysfunctional families.  I know no one here has any kind of dysfunction in their family, so of course we're speaking of people outside the room.

Alzheimer's brings out the best in people, I should start by saying that.  In my six years in observing this world I have been continually impressed by the compassion, sacrifice, generosity and eloquence in the caregiver world.  Time and time again people of ordinary means with very limited resources truly rise to the occasion and exhibit a level of humanity that they probably didn't even know they were capable of, and that is no exaggeration.

It also brings out the worst in people.  Thieves, con artists and just slightly less than scrupulous car dealers, and other sales people, can easily, very easily take an Alzheimer's patient for their life savings.  Unscrupulous or vindictive family members can do the same, taking advantage of the confusion to divert funds or take over property.  Here is one brief statement to that effect from a caregiver in Kentucky.

"We've been trying for two weeks to stop my sister and brother-in-law from stealing and from moving into mom's house, which they have. I suppose we'll find out Monday if the legal system moves on her behalf. The bottom line to all this is that I have mom and she is safe, happy and in good physical condition.  To her this is home and she expresses her desire to remain with us all the time.

"This whole situation is so sad.  I loved my aunts and uncles and certainly loved my sisters.  That's loved in the past tense.  Greed on their part has destroyed my mother's family when she needed them the most.  If it weren't for my children and my husband, there would be little daily help with mom.  When the others failed to get control of her assets, suddenly no one sent cards, letters, called or tried to see her."

This sort of violent family implosion is all too frequent.  But that's really not the main point I want to make in this challenge. That's not what most people experience. In between the best and the worst if often, frankly, a fairly ugly middle ground. Extended family members who all mean well but who don't entirely trust one another or who are perhaps a little jealous of one another, or who live a thousand or 2,000 miles away and are finding it very hard to believe that things are really so bad.  One sibling living nearby reports that mom's memory is shot and she needs to be watched over constantly.  Another sibling living four states away says I just talked to her and she seemed fine.

In the early stages of Alzheimer's, patients can look and sound fine and appear in every other way normal.  They can also can leave the stove on and burn the house down.

Different siblings have very different interpretations of the situation. I cannot stress how common this is.  If a family has any underlying issues of resentment or mistrust before facing this disease, and what family doesn't, Alzheimer's is perfectly suited to exploit them.  Fundamental questions of home care, medical care and control over financial decisions can rip even fairly stable families apart.

I'd like to close my remarks today with a portion of an email I received recently from a daughter of an Alzheimer's patient who speaks to this issue and also more broadly, to the enormity of what Alzheimer's does to everyone in its path.  This is from Omaha, Nebraska.

"My grandfather was recently diagnosed with Alzheimer's. He's in the early stages.  Last month he had to close his carpet business, which he had owned for 50 years.  They had an auction, which was very difficult. I tried to convince the whole family that the point of his life's work was not the things that people were walking away with for pennies but to raise a family, to own a home, to see the world; he had all of this and more.  The end was just details.

He raised four daughters, three of which have raised their own families.  We all still live very close to each other. My grandmother is overwhelmed.  She chooses not to speak of this at all. My mother and her sisters are trying to make sense of it. They're helplessly fumbling for answers, for help, for a solution. I think they know there is no real solution.  They have told me privately that they expect a big blowup sometime soon since no one agrees with what the others are doing.

Life is happening, I think.  It has been happening and we've all been growing older but now it is really coming at us full force.  Does that make sense?  Thank you."

That's from, as I said, from a daughter of a patient in Omaha, Nebraska.

Thank you so much for inviting me here today, and I hope to have an interesting discussion from here.

CHAIRMAN KASS:  Thank you both very much.

Let me just open the floor for comments and questions.  Dan Foster, please.

DR. FOSTER:  I want to just make a couple of points.  Leon asked me as a physician to maybe add a point or two about taking care of these—I don't do anything like Dennis does, but I have been involved with academic people who have had early onset.  And I wanted to make just one point about this.

In the course, as we heard earlier, the worst thing is when people, the patients, know that they have it and before it becomes irrelevant to them. 

I recently had a member of our faculty who was involved with all of the early space involvement, all the human experiments in space. And he asked to see me urgently. And when he came in, he sat in the chair. He has these very blue eyes and looked at me, and just looked at me.  I said so-and-so what is it- I don't understand what you wanted to see me about. And he said nothing works anymore.  And I saw a single tear drop down his cheek.  He said I was diagnosed fully last week, as far as one can do clinically, with Alzheimer's Disease, they took away my medical license and said I couldn't drive anymore. And I came to ask you if I might have one favor from you.  And I said anything that I can do I will do. And he said can I keep my office.  He said I want to try to finish some papers that go on.  And I said of course you can keep your office and your wife can drive you in.

We had almost everybody from NASA, astronauts and so forth, came at a symposium for him. And he still comes in every day.

But the point I want to make more specifically in another case is that through this loss that occurs there is often times a strong quest to maintain the essence of what the person was.  And I want to tell a story just to end it very quickly with two ways.

Abraham Lincoln says "They tell me I tell many stories, and I reckon I do, but I've learned that for ordinary people telling stories is the best way to communicate."

And I want to just give you, because I might not remember it well, I want to tell you what I said at this person's funeral, just very briefly.  I said now to the core of his essence, he was a teacher. He thought that the highest calling was not research or clinical care, but teaching. I never asked him this, but if I had asked him to define what he was he would answer in one word:  A teacher.  And so this is what I said. 

There was a prayer about teaching written by Gabrielle Mistral who won the Nobel Prize for Literature in 1945. She said "give me simplicity and give me depth. Free from the temptation of being vain and glorious or commonplace in my teaching.  May the splendor of my enthusiasm be reflected from the bare walls and fill the room."

And I said so-and-so filled the room with that splendor day after day, year after year. 

A final picture of his essence.  He died of an early onset and rapidly progressive Alzheimer's dementia.  It was an awful thing, it is an awful thing when the cognitive function of the brain dies and the biologic function remains.

I was Allen's physician from the time the disease first appeared until Dorothy took him to California for the end months; that was his wife.  And the last year and a half or two years in Dallas he could not write a check or tell time, yet he wanted to come to the school everyday just like the first case. I saw him formally in our ambulatory care center once a month. There was really nothing I could do. But I periodically, once a week or so, would come by to his office.  To be a teacher you have to study continually. You have to be a life student because medicine changes quickly.  Often when I came, this man who could not tell time or write a check had a medical journal open marking sentences with a yellow pen.  He could not remember a fact he had read, but there was a remnant somewhere there amongst the beta amyloid plaques and neurofibrillary tangles for the Alzheimer's lesion that said beneath his consciousness I am a teacher and I have to study.  And that was his essence.  To the end he tried to be what he was.

Both these professors tried to be what they were.

I wasn't going to say this, but—and I don't want to offend anybody by the specifics, but he and his wife were estranged.  And you said that Alzheimer's brings out the best of people sometimes. They had lived separately for quite a long time, never divorced.  It brought out the best in her. She kept him at her home in California and would call me frequently while there.  

His wife had a very strong religious faith.  She was a woman who was able to hold the Christian faith. And she was describing to me how he was defecating and urinating all over the floor and she would have to clean that up. She hadn't put him in an institution.  And I said well, Dorothy, it seems to me you're operating in a very Christ-like way, because I knew the details of the estrangement. And this is what she said to me:  "Did Jesus ever scream?"

So it's a story.

CHAIRMAN KASS:  Thank you, Dan.

DR. FOSTER:  Well, I didn't mean to interrupt the conversation here. He just asked me—I always do what Leon tells me.  And he said he wanted me to tell a story.  So, to get back to this.

CHAIRMAN KASS:  You did splendidly.  Really splendidly. The silence means that it was not going to be easy to follow.

Janet, please.

DR. ROWLEY:  Well, I feel my sort of mundane and pedestrian questions are almost inappropriate at this particular point, but maybe just to carry on.  I do want to thank both of the speakers for their illuminating discussions.  And I have three questions for Dr. Selkoe.

One, you pointed out that there are more women than men who have Alzheimer's.  One can think that maybe it's related to estrogen or some such and recent reports that it may be more common in women who receive supplemental estrogens post-menopausal might support that. But I was curious. The second, is why the hippocampus or are certain regions really preferentially hit or is it universal and memory is just the one that we noticed, but then we think that's not so because motor functions continue; why the hippocampus?

And finally, recent reports that suggest there may also be some relation to lifestyle and the kinds of changes in lifestyle that are being recommended in terms of more exercise and better diets, etcetera, whether you think that has any role possibly in prevention or delay?

DR. SELKOE:  Well, thank you. Those are very important questions.

The gender difference is simply not well understood. It clearly is there even if you take into account the greater longevity of women and all the other factors that we know about.  I think that it may have to do with the more abrupt menopause that women experience than men and the rapid change in the estrogen levels.  I'm not an endocrinologist, so I can't speak more to that. But I do think that estrogen balance may well have a contribution.

I also think that there's genetic evidence of something on the x-chromosome that could play a role, too.  And perhaps having that in two doses has some effect on that. The gene has not been found, but the x-chromosome is one of five chromosomes that look like they contain genetic factors that predispose to this disease.  This would not be recessive now, this would be something that would be dominant that if you had it in two copies it would be worse than having it in one. So we don't know exactly why.

And I have to say that in everyday practice there are an awful lot of men who have this disease, so it's not like—I thought that statistic that I quoted was surprising to me. I think my practice is not skewed that much towards women.

PROF. GEORGE:  Could you just clarify for us, are we talking about the sex differential in all the dementias or strictly Alzheimer's Disease?

DR. SELKOE:  No, Alzheimer's Disease.  Only Alzheimer's.  Yes.

In the case of why selective areas of the brain are vulnerable, we know a little bit about what might be going on.  The amyloid protein and the tau protein are everywhere.  And, indeed, amyloid plaques even occur in parts of the brain important for movement, like the caudate and putamen that are so devastated in Huntington's Disease, they may have a lot of amyloid plaques.  Even more than the hippocampus, per se.

But what's different is that the plaques in the striatum are early immature lesions. We call them diffuse plaques and they don't seem to mature even when we look at the brain at the end of life, the plaques have all stayed immature.  That suggests in the hippocampus there are some maturing factors. And my guess is that in the fullness of time we'll discover some, in my view of things, pro-aggregating factors in the hippocampus.  It's not just in the hippocampus, it's certainly in other areas of association cortex, but it's apparently not as much in the motor cortex where you see the early plaques, but not the more mature ones.  Or the glial cells are different in these two different regions.

I think at the end of the day there has to be a biological difference, and I think a good place to start looking is in terms of pro and anti-aggregating factors for amyloid-beta protein or for the response elements of the neurons.

And the third point about lifestyle, indeed I tell my patients that they should try and, most importantly the children of those patients because they're the ones who most want to know what to do, that they should try to do all the good things that the world is teaching them, the biomedical community is teaching them about exercise, cholesterol, hypertension, etcetera because they can make it less likely they'll develop vascular dementia.  And that means they won't have a double whammy.  They won't have both a tendency to Alzheimer's, potentially genetic or otherwise, and also have vascular dementia.

Whether vascular disease directly causes Alzheimer's Disease or is a direct risk factor, I personally am agnostic about.  There is some evidence that vascular factors in animal models can accelerate the process I spoke about, the Alzheimer's in the brain. But I think most of the impact of exercise, etcetera, is in avoiding other bad things in your brain rather than avoiding Alzheimer's Disease. But we'll see.

CHAIRMAN KASS:  Let's see, I have Gil and then Rebecca.

PROF. MEILAENDER:  This is partly a comment and partly a question for Mr. Shenk.  Trying to think about the relation of a couple of things you mentioned in your five points. You said when you were talking about denial and the stigma that is involved in that, that that is in fact the thing that you have come to emphasize especially as you give talks and so forth, that people need to realize that it's a disease and there's no reason to stigmatize it simply because it's a disease.  And that makes sense to me.  I understand that.

I wonder though if in fact there isn't a deeper issue that relates to your very first category about the fading away and the humiliation you said we feel about it.  I wonder if we should accept that?  Accept the fact, the notion that fading away is, in and of itself, humiliating?  And you know, whether there's a disease base or not if we didn't think of it as humiliation, if we thought that a person at every stage of his or her life was to be equally valued, we might learn to think differently about it.  And it seems to me that in some ways that may actually be more fundamental than even the question of stigma.  And I'd just like to hear what you'd say about it.

MR. SHENK:  I don't know what I can add to that.  I think that's an ideal that we should strive for. I think that's wonderfully said.

I think as a practical matter this is how people react. They do live a lifetime being proud of all things that they can do.  And as we get older, we're taught we acquire  more knowledge and hopefully more wisdom and we know that we have more skills and, yes, we get a little slower and this and that, but as the gentleman talked about this morning—at least to middle age but I guess now we've kind of pushed middle age upward so that we think that we just get better and better. And it is humiliating.  I mean, it is just extremely disturbing to someone that they should start to lose any of those skills.

And I think the other thing I would say, which I write about quite a bit in my book, is that once you start to lose your memories, your ability to remember recent things and then your ability to make connections with past memories, you are very much losing a part of who you are. There's no getting around that.  We are, in many ways, the accumulation of our memories and our reactions to the things that we've experienced.  And I think that we want to strive to not feel shame and humiliation for all the right reasons, but I'm afraid that there is just something that does rob you when this disease comes along.  And at a certain point there's no way to get around that.

I hope I've addressed what you said. I think you said it more eloquently than I did.

CHAIRMAN KASS:  Could I have just the Chairman's privilege a tiny bit? I was struck by that also, David. You seem to think that knowledge that this really is just a bad brain disease would go a long way towards at least moderating some of the humiliation felt if not by the patient, at least by the caregivers.  Gil thinks that there's another theory, namely some theory of the dignity of the human person no matter how reduced that could cure people from humiliation. But it does seem to me, as just a phenomenological and psychological matter, if one can no longer remember the name of one's loved one or if one has lost bowel and bladder control, it's not a question of some kind of modern deformity of thought or failure to understand the brain that would lead a person to some kind of profound shame and humiliation. 

And I don't think that there's any way that either biology or theology is going to get us around this brute fact of that experience.  And the attempt I think to think otherwise is I think wishful thinking. I don't know—

PROF. MEILAENDER:  There's no such thing as a brute experience that's uninterpreted, I think.

CHAIRMAN KASS:  I'll let that sit.  I shouldn't have interrupted. Rebecca, please?

PROF. DRESSER:  I have a question for each speaker. Maybe I'll start with Dr. Selkoe.

To some extent I've heard this disease described as iatrogenic in that it's a byproduct of success in medicine in other areas so that more people are living longer. And I guess as an aside, I wonder how much that has to do with the gender differences.  It's just there are more older women around.

But in any event, this is a question I always have with treatments.  If an effective treatment does come along, I think it's important to think about, you know, that the impact of that could be positive and negative.  So to what extent would it just give more years of life, some less impaired but then some more impaired?  Because as you point out the lifespan with people with—I forget if it was all dementia or just Alzheimer's is shortened.  So would this treatment then remove some of the reasons people die at an earlier age so that you would then have this longer lifespan, but it would also include many years of impairment after the treatment loses effectiveness?

DR. SELKOE:  Well, I think it depends on whether the treatment slows the progression but you eventually develop the full blown disease anyway, so you have lots of bad symptoms. It's later on in life maybe at a time you could cope with them even less well than when you're 75 or 80. If it does that, then it may not be a blessing or not an unmitigated blessing.

My sense is that, and frankly speaking so much depends on whether we are getting the biology right. If we're getting the biology wrong, then we're in trouble and scientists have generally voted with their test tubes, as I like to say, and they're doing a lot of experiments around the topic that I discussed and related topics and many other ones that I haven't talked about. But if we get the biology wrong, well then we obviously have to start over and figure out some other way. But if we're getting the biology right there are other human diseases in which little proteins build up in which the disease can be cured completely and the patient is free of that disease.  Of course, they're now prone to a lot of other diseases.

So I think that much of the field is attempting to find therapies that will stop the disease entirely or really prevent it from happening. And the therapies would be given to people in their 50s and 60s.  So I believe, and I've written this myself and many others in the field have written it, that the brave new world of Alzheimerology is that we will do risk assessment for this disease in detail in the 50s and 60s if our society can afford it as part of health screening as we do for vascular disease.  And we will take a careful family history.  We will measure amyloid data protein in the blood. You can't measure tau in the blood, but you can measure both proteins in the spinal fluid.  You could do an imaging scan such as Dr. Bill Klunk has begun to show us how to do, and others as well. And even you would now do I believe for geno typing because you would have something to offer.  And you would put the patient almost in a numerical category of likelihood once you got enough experience with these numbers and then offer treatment.  Either a very early treatment, prevention I should say, or something that's not as aggressive or robust and therefore has less side effects.

I think that's where we're going.  We're going to attempt to allow people not to have this disease at all.  And then what will the outcome be?  It's quite scary to think about it, and I'm  interested in that question and think about it a lot, and interested in answers from around this table, which would be enormously informative.

I think people will develop other diseases and we'll have other problems of late life.  But they, presumably, won't get the condition that we now call Alzheimer's Disease, and that would be good.

PROF. DRESSER:  I think it's an interesting ethical question if something were just, say, to delay it but then the onset will occur and then there will be these future years, is that a worthwhile benefit?  I think we would probably jump on it and want it and then deal with the consequences later.

DR. SELKOE:  You know, this is an aphorism that's been put forward I think in part by the National Institute of Aging.  And it's not one that I warm to, the idea of delay it by five years and you get five full less, delay it by ten years you get ten full less, or whatever it is.  I don't think that's a compelling model.  I think that we have to think about stopping the disease entirely and not delaying it. I think delaying it, as you point out, could turn out not a good idea.

And I don't think that, frankly, the way that we treat most medical conditions—you know, there's the way that we are attacking this at its genetic roots, that we would think that our interventions would delay it.  We'd think that either they don't work at all or they just don't allow the buildup of this protein at all, or very, very little. 

So I hope that we are mostly aiming at full prevention.

PROF. DRESSER:  Thanks.

CHAIRMAN KASS:  Frank—

PROF. DRESSER:  Could I ask my other question?  Really quickly.

I think that the beautiful thing about your book and the point that Dan makes is that people with Alzheimer's and dementia don't lose their subjectivity until later on.  And so to some extent they still remain individuals and a lot has to do with their earlier history and so forth. And then that material on the man, Morris Ferdell, was really fascinating in that way.

I think when we're thinking about our ethical obligations that's a very important element to factor in; what do we owe to people and in terms of treatment, care, end of life.

And also, and I think you were doing this a little bit, the danger of blurring the burdens on the caregivers with the burdens on the patients.  And it's not to say that burdens on caregivers are not something we should worry about and try to reduce and so forth, but some patients are quite content when their families are going crazy, you know.  And so we just have to be—it's very easy, I think, to say oh well, you know I shouldn't do this because she wouldn't want that when it's really I don't think I would want that in her position or—there's just a loss of boundaries there I think.

MR. SHENK:  Well, I take that point.  Let me rebut that just a little bit, that last point.

The caregiver has to look after the caregiver first.  We're talking about a ten year prison sentence where they are going to be spending most of their energy and time and resources taking care of this person.  Obviously, they have an ethical obligation to do that as best they can. But I would say the real danger, what I've seen more often than the way you phrase it, is that the caregiver doesn't take good enough care of themselves or look after their own interests enough and end up hurting themselves through stress and other ways, and then doesn't do their patient any good.

So just to make that—not really to contest what you said.

CHAIRMAN KASS:  Frank and then Michael Sandel.

PROF. FUKUYAMA:  Well, I'm actually just restating a question that Rebecca asked, but I didn't quite hear the answer for Dr. Selkoe.

If you converted the absolute, the numbers you put up for absolute incidence of the disease and the projections forward into a rate at different ages, is there any evidence that the rate of incidence has increased over time or is the increase in the absolute numbers simply the result of greater longevity.

DR. SELKOE:  Right. I don't think there's any evidence of an increased rate incidence or attack rate.  And I think it's the prevalence that's risen tremendously because of the successful aging population.

An enormous factor in this is definition.  It was called other things before; hardening of the arteries as we heard earlier this morning.  And so the prevalence of Alzheimer's Disease jumped dramatically after 1968 when three scientists in England said look it's not actually hardening arteries, it's this disease that this guy Alzheimer described.

So I would say that I don't know of evidence that the incident factor.  So in that sense what's the causative agent here?  What is the actual cause?  We don't know that it's an infectious agent.  We have no evidence for that.  So if it is a genetic agent, well then it takes times for that gene to express itself. And time is crucial for Alzheimer's Disease.  I think it's prevalence, not incidence.

CHAIRMAN KASS:  Michael Sandel?

PROF. SANDEL:  I have a question really as much for the group as for our presenters, but prompted by this discussion and the one we had earlier.  And it has to do with stigma and the moral import of biological explanation.

In the earlier discussion  Paul McHugh was expressing a certain nostalgia for the old fashioned, nonmedicalized picture of old gramps was just kind of went soft in the head or the hardening of the arteries, kind of went loopy.  And Mr. Shenk actually expressed the opposite.  So there's a certain nostalgia.

It also came up when we were talking about the old fashioned diagnoses of squirminess of boys when we were talking about now ADHD.  So in both of these cases Paul expresses a certain nostalgia for the nonmedicalized description that has been displaced when we have more precise or at least different biological accounts.  And then the mission that David Shenk stated in the preface to his account, his mission was once we understand the physical basis of disease, then we get past the stigma.  So in a way, that's the opposite to the nostalgia.  It's saying we'll get past the stigma if we can find the proper physical and medical and biological description.

And it's really those different pictures, those different accounts about the moral significance, the biological explanation that struck me.

So compare the stigma, David Shenk's worried about the stigma when people just said well so-and-so's going loopy and didn't have this account about the hippocampus.  And so my question is this, and it's not directed to anyone in particular but it's a question that seems to me to be raised by these presentations.  If the condition of loopiness is worthy of stigma, then why should the discovery of its physical basis in the hippocampus dissolve the stigma?  Or, to put the same question from the opposite direction, if loopiness is not worthy of stigma, why should we need to discover a physical basis for it in order to become more tolerant and accepting of it?

CHAIRMAN KASS:  David?

MR. SHENK:  I would like to speak to that just for a moment.

I'm going to try not to use the word "loopy."  But I think generally you've hit on something really, really important, which I also talk about quite a bit which is these two worlds that we are now encountering simultaneously and which we occasionally or quite often need to remind ourselves are often kept distinct.

We have the world of the condition, the human condition which we now call Alzheimer's Disease which is this person who is going through this horrible ordeal which we can't treat very well.  You know, we do the best we can, but basically we are caring for that person, and that is a human condition and it has to stay human and we have to deal with it on that level.  A lot of ethical and moral concerns there.

Then there is this world of science. There is this idea that we are calling it this disease.  We call something a disease when we decide as a society that we have the moral obligation and perhaps the capability to do away with this condition.  We are now in the middle of this extraordinary war to do away with what we now call a disease.

The people who are living with the human condition need to know about the disease increasingly as we have treatments and as we just know more about it that can help them. They also need to be reminded, as I try to do, not to get caught up completely in the medicalization of this disease.  Because I think that that tends to drag away from some of the human questions.

Let me leave it there. But I think that's really important.

DR. McHUGH:  Can I jump in, my name having been used in vain.  Let me say to Michael that it wasn't nostalgia that I really wanted to speak to.  I was speaking about the natural human condition in relationship to our evolving knowledge.  That we begin with thinking these are natural events.  Then somebody comes along and says no this is disease, Alzheimer's Disease, we have no cure for it, it probably runs in your family.  It's going to be awful. And then that's a necessary age in order to differentiate from hardening of the arteries and other things.  And ultimately find the kind of cure that Dr. Selkoe and David are talking about.

So I didn't mean it in the sense of nostalgia. I meant it in the sense of how you deal yourselves with the ultimate dealing with stigma by saying to people we are all in this together as a community.  We know what you're going through now and we, by the way, doctors have brought it to you because this is the way that medicine advances.

During this time, by the way, we want to take care of you just like we did take care of old gramps.

And it's that side of things that I want to make us aware of that as we progress and all of us thinking that we're making progress as we've got disease identified by its characteristics, both pathological and clinical, that we are sending a message out to other people that is really tough. 

And I'd like to, by the way, end up by saying again these presentations are wonderful.  I'd like to get my patients onto to the vaccine, if you know how do it, Dr. Selkoe. I'm in the retail business, and how can I do it?

CHAIRMAN KASS:  Peter, did you want a brief comment on this thing?

DR. LAWLER:  I don't see the stigma issue with loopiness, hardening of the arteries, Alzheimer's Disease.  It's no one's fault.  But meanwhile, you scared us to death in a way that mere loopiness or hardening wouldn't because you've described this disease in a very plain yet poetic way is utterly predictable and utterly devastating.  And so it's no wonder that people—and I'm not blaming you for this or anything—that people really back off because it's so extraordinarily terrible in the way Leon was describing it.  It's not a stigma, but it's just necessity and a really kind of awe inspiring form; that you know exactly this is going to happen in this progressive way to this person once this thing's identified.

MR. SHENK:  If I can just briefly reiterate, thank you very much for that.  Just to speak personally, you know I've been in this world now for only 6 years as opposed to 25 or more. I started out terrified and completely ignorant, and now I know a fair amount and I'm still terrified.  I'm utterly terrified of the disease.  People ask are you able to come to grips with it by knowing more about it.

So I'm not denying that people who know more about the plaques and tangles, I'm not saying that they won't be afraid of it anymore.  I think they'll still be terrified of it. We're rightly terrified of it. But there is something about the mystery which so many people experience.  You can live with this disease as a caregiver and a patient for ten or 15 or 20 years and never really have a clue about what is going on.

And also as something I talk about in talks that I didn't get into today, is that there's a very practical side effect to knowing about plaques and tangles in the hippocampus and knowing that it's then going to move to the front of the brain, and then knowing that it's going to move to these areas, which if you have a sense in your head that there are stages and you know what you can prepare for.  You can predict what future failings and dependencies are going to be in play.

CHAIRMAN KASS:  We have a problem.  It's five of one.  I'm going to let a couple of people that have been waiting, and we've got a guest at 2:00, and because at the end of the day we're going to have to be fairly prompt.

Let me simply ask Ben and Alfonso to make their comments.  We'll make sure that the people who are on the list who haven't gotten a chance to speak will speak first in the subsequent session, if that's okay.

DR. CARSON:  Well, my questions are quick.

I wonder if either one of you are aware of any cases of spontaneous regression of a diagnosed case of Alzheimer's Disease?  And also, is the incidence of AD different in nonsophisticated areas of the world?

DR. SELKOE:  No, I don't.  I see patients who plateau for 3 years, 4 years sometimes, very little change, maybe even longer than that.  But I don't recall a case where I or another clinician felt this is very likely to be typical Alzheimer's Disease and then 10 years later everything is fine or the patient's gotten better.

Obviously we have to worry about the confusion with other behavioral problems like depression.  And if we don't diagnose it right, you know, and it's hard sometimes to diagnose Alzheimer's Disease accurately. But I think no.  I think if it's Alzheimer's Disease and it turned out to actually be Alzheimer's Disease, we don't see regression.

And the other point was about the? —

DR. CARSON:  In nonsophisticated areas of the world—

DR. SELKOE:  Yes, that's a very important issue.  See, I forgot already, so my wife is right.  Forgot the question, there were only two questions.

Bob Katzman and UCSD has done, among others, some studies in China in people who had very limited education and looked at incidents of what he thought was Alzheimer's dementia, he and his colleagues.  And they thought it was higher among people with less education and less wherewithal.  And that's been reflected by other studies.

So there is some evidence that there is a protection from higher levels of education. However, we all know well and this group better than that, that that is a surrogate for many, many other factors. So just educational level—so the health care is better, etcetera.

But the answer is I think that people with less advanced education get, to some extent, more than their fair share of Alzheimer's Disease.

CHAIRMAN KASS:  Alfonso briefly.

DR. GÓMEZ-LOBO:  ­This is an information question for Dr. Selkoe.

Do you foresee or predict any novel therapies for Alzheimer's Disease based on stem cell research?

DR. SELKOE:  It's a wonderful question.  There is a small possibility in my mind from what I know about the biology that a therapy based on stem cell implantation could be helpful here, but it's a rather small possibility and that's why I didn't mention it in my initial remarks.

I certainly would think that other neurogenetive diseases are better candidates for treatment with stem cells than Alzheimer's Disease.

The reason is that it is difficult to say precisely where you would implant the stem cells. Presumably in the hippocampus if they were delivering something beneficial.  While the hippocampus is very important to the disease, there is a lot going on outside the hippocampus and in connections to the hippocampus.  And it all depends on what the therapy turns out to be.

Maybe stem cell implantation into the hippocampus would rescue neurons that project to the hippocampus from elsewhere. Maybe they would diffuse the good factor everywhere in the brain. But the disease is so widespread in the nervous system as compared to Parkinson's or even amyotrophic lateral sclerosis, which is also widespread but affects the motor system more precisely, that I would worry that stem cells would have that uphill battle.

So, you know, editorially I would say that stem cell research is something that's extremely important for understanding brain function and neurodegeneration broadly, but I think the answer to your question from my perspective is that I don't put it high on the list for potential for Alzheimer's. I could be wrong.

CHAIRMAN KASS:  With apologies to the two Bills and Diana, if your comments can hold until this afternoon, we'll find a place to put them in the discussion.

I want to thank Dr. Selkoe, David Shenk for wonderful presentations and for an illuminating discussion.  I hope you'll stay for lunch and people can join you. We'll get you home in time for your anniversary celebration.

Thank you very much.

Please, please let's be back by 2:00.

(Whereupon, the Council adjourned at 12:58 p.m., to reconvene this same day at 2:00 p.m.)


SESSION 3: AGING, DEMENTIA, AND THE CARE-GIVER: FAMILY AND INSTITUTIONS  

CHAIRMAN KASS:  On the record.  Let's get started.  There's some material that's at your place.  It includes she says, 'The President's Council on Bioethics Private Tour of Deadly Medicine' which we've arranged for 5:00 p.m. at the Holocaust Museum.  It has the instructions.  We will go by cab and the information is there.

I won't read it here, but we will break, I hope, fairly close to 4:15 p.m. as scheduled to give people enough time to get over there.  Then there's also information about the site for dinner which is a couple blocks from the hotel on Pennsylvania Avenue toward the Capitol.

This afternoon's session, the first session, we turn from the patient with Alzheimer's Disease and Dementia to the caregivers, both familial and institutional, and we are really very fortunate to have as our presentor, Dr. Geri Hall, who is Clinical Professor and Advanced Practice Nurse at the University of Iowa who you can see from what she supplied us in terms of CV has been very, very active in the field of geriatric nursing and nursing education and has touched on many of the topics of care that are of interest to us and are of importance in the field.  You will have all seen the specially prepared outline of some of the major ethical issues that confront caregivers that we've read before the meeting.  Dr. Hall, thank you very much for coming.  We look forward to your presentation.  Welcome.

DR. HALL:  Thank you.  I'm deeply honored to be asked.  Usually people ask me what it is I do and if you think about dementia as this huge, enormous piece of information that families need and a physician gives a particular diagnosis, it's almost like the dog that caught the school bus and I'm the one who teaches you what to do with the school bus once you have it.  So I deal with families.  I deal with institutions.  I deal with patients directly and do the day-to-day management issues as the disease progresses.

With that, we recognize that there are just tremendous numbers of every day ethical issues just trying to get your arms around who is this person, who is this person becoming.  When we looked at the ten-year course of the illness, and now we're seeing patients who are having the illness 15 years, 20 years, because of two things I think.

The first is that we're much better at helping families to recognize the disease early.  However, that said, in a study that we have right now that concurs with other studies, roughly one-third of our patients are never diagnosed at all and another third don't undergo a rigorous diagnostic evaluation.  They go to see their family physician who may or may not run some blood tests and say 'Yeah, you know with the course of this it probably looks like Alzheimer's' so that only about one-third of the patients that we talk about have undergone a rigorous diagnostic evaluation with some imaging and neuropsychological testing and that sort of thing.

But when we talk about being loopy and this morning I was amused and interested by that, what we're looking at is so much more than memory.  We're talking about changes in visual and auditory perception.  Little by little, this patient does not see and hear what we see and hear.  Essentially, the eyes are taking the picture, but the brain doesn't develop the film quite right.  They lose depth perception.  They lose the ability to see things on a vertical plane.  They can't see things moving across a horizontal plane.

There's difficulty with planning.  The patient knows what they want to do.  They can tell you what they want to do, but they can't get steps into the right order to get something done and they're very aware of this when this is happening.  Difficulty with initiating activity, communicating, and (one of the earliest losses) is reading comprehension where the patient can read aloud, but they can't tell us what they've read.  So all of the clocks and the calendars and that sort of thing, leaving notes becomes essentially meaningless.

In fact, there's a new study out from Sweden that suggests that by the time a patient is in early dementia, they really don't use the phone very well which is sort of the family's life-line to care.  Ability to work, in the abstract, where suddenly they are buying magazines like crazy.

I had one gentleman recently who spent $600,000 on Publisher's Clearinghouse because he knew that he was going to be able to win a Jaguar and it never dawned on him that he could have bought ten Jaguars for the $600,000 that he had invested in Publisher's Clearinghouse.  This was a patient who still looked and sounded normal to everyone.

Difficulty with reasoning, learning new material.  Decreased time sense which people don't want to talk about that, but that is enormously disabling.  If you can't figure out when tomorrow is or what it even means and your whole world is more existential, that's a problem.  Tolerating stress.  Understanding cause and effect.  These are huge deficits that occur over a period of time.

Reisberg is probably the best known person for developing the staging of dementia and the gold standard that we use is the Global Deterioration Scale.  One is where I hope you're all at now with no cognitive decline, but then we go to very mild which Dr. Ron Peterson calls 'mild cognitive impairment' to mild cognitive decline and so forth.

What we look at in terms of dementia is we look at dementia as a developmental process that are certain losses the patient has happening and that during that time, there are certain developmental tasks that the patient has to do.  At the same time for the caregivers and family, there are tasks that they have to accrue and the conflicts that occur when the two tasks clash such as the need for autonomy versus the need to provide physical care is where we see the ethical issues on a day-to-day basis in Alzheimer's Disease.

In stages one to three, we see difficulty with abstract reasoning, money management, shopping, employment, time sense and a tremendous decrease in the patient's sense of risk.  This is the patient who sticks his hand in the lawn mower to see if the blades are turning.  This is the patient who tries to pull a rock out of the snow blower or changes propane tanks with a lit cigarette.  We see these patients in the ERs all the time and it's the 'What were you thinking' kind of accident.

But again, these are patients who look normal, who sound normal and nobody can figure out what's going on.  There are changes in executive function, so planning and goal-setting, whether it's planning a vacation or managing employment.  One of the things that we've seen that's a very interesting ethical issue is when do you ask someone who has dementia to quit?  Should we be giving them downsized job which is a great idea until you realize that that patient will have paycuts and will be judged on disability at a much lower pay grade than they would if they just retired as soon as they discovered the disease.

Loss of reading comprehension and the patient starts to undergo a process of grieving and that includes denial and anger and shock and depression.  Stage one to three, the patient looks normal.  They sound normal, but if the family notices that paying of bills and finances are not quite as good as they used to be, this is patient who is very, very vulnerable to exploitation.  Overdrafts.  Motor vehicle accidents.  The driving statistics show that by the time we can recognize signs of memory loss that patients have a 33 percent higher incidence of motor vehicle crashes and I think it's a 42 percent increase in the number of crashes that they cause where they stop suddenly.  The car behind them is able to stop, but the cars behind them can't.

The other thing that occurs very early is problems with safe administration of medication.  Taking medications particularly when you heard David Shenk talk about the list of medications that the average person was on and that's a fairly average list.  I thought it was interesting that the patient wasn't on a cholinergic.  But if you imagine that patient trying to keep all of that straight, that's very difficult.  At this point, the family because of HIPAA rules is not able to communicate with the physician directly.  They can talk to the physician, send a letter, but they are not able to gain information back in a private way.

There's also no legal actions preventing catastrophes because this patient is competent.  So that the man who gave away $600,000 to Publisher's Clearinghouse, we tried to take him through a court of law to have him judged partially competent or something and he was too intact to do that.

Families at this point are in a state of denial also.  It would be nice if everybody got together and really thought about it carefully and said "Gee whiz, mom's got dementia."  This is from one of the Alzheimer's List Participants.  She said, "Ah, yes.  If we knew then what we know now in regard to my mom, my dad did say she had Alzheimer's and I got so angry and said "No, she did not."  Had I been more astute or known more about AD, I would have tried to ensure that happened a bit differently."  Now this particular caregiver is complaining because her sisters don't recognize it at the same level that she does.

Gaining consent is one of the biggest issues that we deal with in terms of families working with the medical community.  Early in the disease, the patient begins to resist change and disclosure, therefore gaining consent is a problem.  Also there is some question about even early in the disease whether the patient's understanding of what consent is all about is truly there.  So what we see is that this affects diagnosis, ensuring medical information.  It affects driving and money management.  It affects fear of abandonment.  It's been my experience that people with Alzheimer's Disease the first question they have  once they're diagnosed is 'Am I going to be stuck in a nursing home?'  It's fear of abandonment.

We can relatively reassure patients that we will be with them and the family will be with them throughout the course of their illness which doesn't necessarily mean that they will be cared for at home.  The family is expected to plan and oversee care, but they have no access to information and attempts to limit autonomy are met with resistance by the patient, the family and members of society.  People don't want older adults to lose their rights.

We expect people with dementia to voluntarily relinquish these activities synonymous with autonomy.  Most of us don't remember our high school graduation as well we remember the day that we got our driver's license.  These folks are not happy about giving up their driver's license and yet in the medical literature, we're still debating should we tell the patient the diagnosis and there are many, many caregivers who don't want the patient to know their own diagnosis.

The legal options as they exist today if you have voluntary surrendering of abilities, it's done in advance by the patient and their attorney.  In most states, it's called the Durable Power of Attorney and you have to have one for healthcare and one for finances.  The family request the attorney enact the document and it has to have a durable clause saying "This is valid should I become incapacitated."

The patient can still make decisions.  They can still send $600,000 to Publisher's Clearinghouse.  So it doesn't limit the patient in any way.  The patient can renig on it at any time and decide that they don't want the person who's being responsible.  The other thing is that the patient's family and others have a very easy time of exploiting the patient's finances.  Suddenly, you find out the kids who have been living in a trailer now have a house and a camper and that does happen.

Involuntary mechanisms are guardianship and conservatorship and usually those are involuntary.  What someone does is they apply to the court in most states and say, "My loved one is incapable of managing their finances and themselves and making decisions" and then there's a physician evaluation and the person is then adjudicated incompetent during a court hearing.  Having undergone this with family members and also as a professional, this is one of the most devastating things we ask families to do.  It humiliates them beyond belief because the people they care about most in the world are facing them with an attorney of their own saying, "I am competent."  Unless the patient really looks impaired, the court usually sides with the patient.

The other thing is that if you have a patient who is very dangerous, they have guns or they are psychotic and acting out, they are a danger to the caregiver, etc., then that patient can be committed.  The problem is when we have commitment it's usually to an acute care psychiatric facility and then once the person has undergone the diagnosis if they are no longer harmful within the psychiatric facility, the court sends them home or to a nursing home and then the patient can leave.  The other thing is that people who are dangerous we have nowhere to send them in many of the states.  There's just nowhere for them to go.  People want them admitted to nursing homes, but we have a growing problem of violence in nursing homes also.  Generally, it's because it's people with dementia who are poorly behaviorally managed.

The dark side experience providers like myself who have worked with this for more years than I care to admit have developed a high degree of suspicion about family members.  There are wonderful, loving family members, but every one of us has awful stories about exploitation, misuse of decision-making powers, taking their inheritance early, buying a house and then a week later moving mom to a nursing home, denial of critical risks, denial of illness.  Just because you've become a power of attorney doesn't mean that you're going to find it any easier to take the car from your father.  It's very difficult.  There are some cases for abandonment.  The other thing is that most state laws for dependent adult abuse do not cover exploitations.  Most states are such that unless it's a huge exploitation, it just never gets reported.

When you become a caregiver, you gradually but surely surrender yourself and your identity.  This is a real huge issue.  The first thing we found from our research is that the caregiver begins to assume responsibility for the patient's story.  You are the ones who your loved ones will rely on for history.

I received a call a couple of years ago from a reporter when I was down in Arizona.  She wanted to know why at Barry Goldwater's death and the funeral why Mrs. Goldwater and Mrs. Reagan who were at the funeral were not more forthcoming about their husbands' conditions.  It was perfectly evident to me that they were the ones responsible for how history was going to remember their husbands and that becomes a critically important part of being a caregiver.

The caregiver has to constantly modify their own behavior to produce desired results.  For example, David talked about the 'fiblets.'  Most caregivers realize that there are battles you die on the beach for and battles you don't die on the beach for.  So you become very adept at blurring the truth.  And very often, caregivers fail to meet their own needs and then once you find out you're a caregiver, it's a real shock.  That isn't a label that any of us volunteer for.

One of the biggest problems we have right now is roughly 35 percent of people with Alzheimer's and related disorders live alone and at stage four. We find that they get into real trouble.  They are resisting social services.  They resist any help.  They resist family intervention and so we get patients into a crisis situation.  Now many of these people have no children which is going to become an increased problem as the baby-boomers age that people with no children and no living relatives have nobody to serve as surrogate decisionmakers for them and few states have real public guardians who can go in and advocate for the patient and act as surrogate guardians.

Consent for research.  Three research physicians asked me to put this in.  At stage three and four, the patient really can't give informed consent for research.  Families very often are desperate for a cure and so they'll volunteer their loved ones for research, but this is a critical ethical concern among people about having guidelines for gaining participation.  Again, truth-telling, failure to disclose the diagnosis to the patient is a huge issue still and then the right to grieve.  Do we tell people lies or do we tell them about their diagnosis so that they can grieve?

In stages four and five, we are looking at placement for many of our people, particularly those who live alone.  Basically, if you have a caregiver who is 85 taking care of someone who is also 85, trying to provide 24-hour-a-day, seven-day-a-week care is very, very difficult.  About 60 percent of people living in assisted living now have dementia.  Many have no access to professionals or regulations about medications and families pay extra for the personal care that they receive there.  Families chose the least restrictive alternative because it's a nice place to go.  It's not a nursing home.  They have concerns about dignity.  The issue is that many people in assisted living right now are not getting the care that they need because it's much more than simply being a nice person.

Dementia-specific ALFs are starting to rise up and a dementia-specific ALF can be anything.  It can be a locked door.  It can be a very therapeutic program.  There are no regulations about this at this time.  The other thing is that many times assisted living facility owners say 'Well, we train our people to work with these people,' but they are people with no healthcare background.  So we've had some real problems with that particularly with violence and psychosis.  They are not bound by the limitations or the regulations of the nursing home and we're seeing eviction of some of these patients with nowhere to go.

Stages five and six, we see people in nursing home versus in-home care.  With in-home care, this is a real significant problem because in-home care is more expensive if you have 24-hour-a-day, seven-day-a-week care.  Most in-home care is provided by family members and they don't have much in the way of professional oversight.  What's happened is that Medicare has funded what they call 'skilled care.'  Because of its nature of being on-going, long-term and non-restorative, Alzheimer's Disease, even though it requires a high degree of skill to manage it, is called unskilled care.  So there is no in-home health coverage for the vast majority of patient needs.

There are few resources in terms of payment mechanisms.  The other thing is that if you have adult children taking care of their parents, they are endangering their own financial security in the future because they are dropping out of the work force or significantly reducing their hours.

The family conflicts are tremendous.  Wayne Karen is probably the most knowledgeable researcher on family conflict and he found that families fought and bickered to create energy to cope and that this was a really important part of the disease and when he as a family therapist got families to stop fighting, they fell apart.  So now what we do is focus on the ability to fight fairly so that they can help having —

Families are afraid of stigma and it is stigma.  I've done a lot of historical research and I'll forward some documents to the Council.  There are still families that adhere to the idea that dementia is a form of divine retribution and that this is very typical time from colonial times in the United States that that's how we've treated this.

I have had one son write me that he wanted to take his father's diagnosis of Alzheimer's off of the death certificate because he did not want that stigma known in his family.  Now that's extreme, but many, many families did not want anyone to know.  One of the biggest ethical issues that caregivers have is at what point do I tell friends, at what point do I tell family, because that's the beginning of the end for the caregiver in terms of this is really the disease and I can't deny it anymore.

Genetic testing, families are interested in it.  Most physicians at this point as you heard are not interested in telling families that they have some potential for this disease.  Families fear the disease.  They fear the source of care and they fear nursing home placement.

The long term care issues are first of all  the right of the resident to have his or her reality versus reorientation.  Reorientation for a patient that doesn't see and hear what we see and hear causes agitation.  It causes aggression.  It causes fear.  It causes depression.

The rights of the individual versus the rights of the aggregate community.  The family's responsibility is to provide for that individualized care and needs and it doesn't end once the patient reaches long term care.  The facility has to do individualized care planning, but they also have to consider the needs of the aggregate community.

That's where we get into clashes and ethical conflicts of "If my mother is acting out, if she is pushing other residents down, if she is spitting on people, if she climbs into bed with people" that sort of thing, 'my mother has a right to do that because she's confused.'  Yes, but you have to consider the global population.  That's been something that nobody's been able to really get their arms around.

The right to assume resident risk versus  staff responsibility to protect.  This is a huge issue that is playing out in the courts right now and that is 'Should my mother be allowed the opportunity to get up and fall or should we tie her down?'  We know restraints cause strangulation.  They cause terrible accidents and injuries.  However, we are seeing families sue the minute someone falls.

The staff rights to a safe working environment.  Many studies have shown that nurse aides feel that violence is a normal part of their job and they don't even report it.  Nurse aide work is about the most dangerous work in America outside of farming.

Then who owns the resident?  Is that person a part of themselves?  Do they belong to the family?  Who is the one who's most responsible?  That's a tremendous conflict.

At stage six, we have a patient who is losing weight.  They are incontinent, losing the ability to walk.  Sixty-one percent of those folks at home are wandering away in the middle of the night and  we don't have a lot of good systems yet for finding them.  Freedom to wander versus the need to be confined.  So we restrain them or not?  Is it right that if someone is agitated that we chemically restrain them?  These are huge issues.

And they are being served inch by inch by policy and also by research, but they are still dilemmas.  Treating pain is huge because pain is whatever the patient says it is, wherever they say it and whenever and these patients don't complain about pain.  So we have to look at nonverbal indicators.

Stopping cholinergic medications.  Families wrestle with this.  At what point, do I stop the Aricept and the Exelon and how do I find that?  I've seen several cases in my own practice where someone has discontinued the patient's cholinergic medication  only to find that that patient is no longer walking and it was a way of keeping that patient from wandering into someone else's unit.

The other thing is that there was a very interesting article posited in The New York Times several months ago about are these medications even valuable because they give so little relief.  One of the ABC reporters, Roger Sergel, sent around to his team of experts of which I'm considered one and said, 'What do you think?'  The academics all said, 'Well, the research shows' and all the clinicians said, 'But in my practice we see.'  So there's that ethical issue of do we go with the evidence or do we go with what we're seeing in practice.

Stage seven is the one where everybody is aware of the problem.  The patient is totally dependent and they are in an infant-like stage.  Reisberg has done some wonderful work in what he calls 'retrogenesis' which in itself is an ethical issue.  That is if you look at Piaget's stage of development that Alzheimer's takes that patient back inch by inch by inch developmentally so that by the time they reach stage seven they are at three months of age, unable to hold their head up, etc.

The family is exhausted, but they have to make the most important decisions of their lives.  Do they feed the person or not feed the person?  Most of us who are in the business now are taking Volicer and Hurley's advice found by research that tube feedings do not prolong life nor do they enhance the quality of life.  And the same with treating pneumonia.  After the first treatment with a recurrent pneumonia in the last six months of life does not increase your chances of survival and it doesn't successfully treat it either.

The Comfort issues are very difficult.  Do we give Valium to relax muscles?  What do we do?  Hospice, until about the last two years, has never covered Alzheimer's Disease and now we're beginning to see hospice coverage on a regular basis.  That is most  families' preference.

Euthanasia or assisted death, I think a lot of families worry that as they see their loved ones fail to take liquid or food that they are really afraid that they are starving their loved one to death and that they are committing euthanasia or assisted death when the patient really is simply shutting down.

Then when to let go and let God.  Very often, society has recrimination for these decisions.  I think ethical issues of dementia are best understood by families as they occur.  As somebody who has worked since about 1978 with dementia, one of the things that I realized when my husband's family developed several members with it is that until you live with it you have no idea.  I mean I had been counseling people for year after year after year and then we went to my husband's uncle's house and at the end of the visit, my husband and I were so frustrated we couldn't get our clothes into the suitcases.  We threw them in the trunk of the car.  You can't really understand what a family has to go through until you've walked in those shoes.

One of the things that came out last week in The New York Times was a thing by Barron Lerner and he said, 'The Reagans' decision not to go public while understandable nevertheless deprived Americans of the opportunity to learn how a family confronted questions crucially relevant to the Alzheimer patient and their families.  Did Mr. Reagan fill out an advanced directive indicating what types of medical treatment he did or did not want as he deteriorated?  Why did the family choose to have the broken hip repaired in 2001 despite his dementia and was Mr. Reagan's pneumonia the cause of his death aggressively treated with antibiotics or was the disease allowed to be the old man's friend?'

I think this statement demonstrates the most public recrimination of this family that has just emerged from this long goodbye.  I think the ethical issues demonstrated just by that statement should be enough that the Committee should understand this is a huge issue.  Thank you.

CHAIRMAN KASS:  Thank you very much.  I want to open the floor for discussion.  Dr. Hall, thank you very, very much for a very illuminating presentation of the complexity of this subject.  Even if we haven't yet been in the shoes of the caregivers, I think it is much clearer both from what you've written and what you've presented here.  Does someone want to open up the conversation?  Robby George.

PROF. GEORGE:  Dr. Hall, just a question of clarification.  Toward the end when you raised the question of feeding tubes, I thought I heard you say that in many cases, feeding tubes do not prolong life or feeding by the tube does not prolong life and, of course, it's not therapeutic.  It doesn't do anything for the underlying disease.  Is that in fact what you said and does that mean that the patient will die likely at the same point whether food is administered by the tube or not?

DR. HALL:  Yes, I'm glad you asked because it's a really important point.  Feeding tubes, Volicer, Volicer and Hurley did the seminal studies on this where they found that placement of feeding tube, either nasogastric feeding tube which has been found in another study to be the single most uncomfortable procedure that's done to anyone done in the hospital and peg tubes which is feeding through the stomach directly, do nothing to prolong life.  The reason for that is that most patients with Alzheimer's Disease die of aspiration pneumonia which is breathing in either food or fluid.  However, in the case of Alzheimer's Disease, it's usually that they are aspirating their own saliva, not food or fluid.

PROF. GEORGE:  Could I follow up then because you raised then the question of concern that family members have that not authorizing the feeding or requesting the feeding by these means worries them that they are participating in euthanasia or assisted suicide.  Is what they're failing to see here is it that the purpose of not administering the tube is either that the tube itself is so uncomfortable and you want to spare the patient the discomfort or the person is going to die at the same time whether the food is administered this way or not or both?  Is that what they are missing?

DR. HALL:  I think the biggest fear that families have is (1) that they may be first of all hastening death.  The other thing is that families are  very worried that they are going to inflect additional suffering because there are myths about people who starve to death that it's incredibly painful and that sort of thing.

The research bears out that people as they stop eating after they've stopped taking food and fluid for about 48 hours, that they go into sort of a euphoric state and they are actually more comfortable than they had been taking food and fluids.  If you talk families through that and work with them on that, they understand that and it's a much simpler and easier death rather than trying to force tube feedings, etc.

PROF. GEORGE:  Then finally, is the situation the same with respect to the aggressive treatment with antibiotics of pneumonias or is that really a different situation both in reality and as far as your experience with the families is concerned, their perceptions of the matter?

DR. HALL:  Again, it's 'am I hastening death' as an issue, but most families understand the concept of pneumonia as the old man's friend kind of thing.  Pardon me for being sexist.  But what we see is, too, that the patient becomes sick so quickly again or we give a course of antibiotics and they remain sick.  So it's a little bit easier in my experience for families to not go with antibiotic after antibiotic after antibiotic because it's essentially useless.

CHAIRMAN KASS:  Dr. Ben Carson.

DR. CARSON:  Just to follow up on that, is the implication then that when a person reaches the stage where they will not eat that they necessarily are going to die within a month?

DR. HALL:  If the person has reached the stage where they will not eat and it's been shown — some patients will stop eating for a while and start eating again.  So we keep offering food and fluids.  But once they've totally stopped, I think there's one case in the literature where the patient lived 45 days, but I think within a month is reasonable.

DR. FOSTER:  Well, let me just comment on that briefly.  One can starve for very long periods of time with no detriment at all as long as you take fluid and vitamins.  At Rockefeller University, they used to take massively obese people and give them no calories for a year or a year and a half.  It doesn't make any difference about that.  They will die quickly usually within about ten days or so if fluids are not contained in it.  So it really is not to do with anything about the calories, about the lack of the food.  It has to do with the lack of fluid.

So if you take neither food nor fluid then death comes usually very, very quickly.  There is almost no hunger.  The technical reason for that is when you starve your body makes substances that are called ketone bodies, aceto-acetic and beta-hydroxy-butyric acids and it's been known for a very long time  that the ketones take away the sense of hunger in the brain.  So if the ketones are elevated, you do not have a sense of hunger doing that thing.

Now you drink a Pepsi-Cola and that goes away.  So you have to do it.  So the issue is that and how long you'll live  without food depends on how much adipose tissue you have, how much stored energy that you have.  So if you weigh 400, 500, pounds, you can live for very long periods of time.

I used to do medical television for the Public Broadcasting System and I had Jules Hirsch from Rockefeller University on the weekly program and he had a Hungarian princess there and she had been under starvation for a year and a half and she looks and felt absolutely wonderful despite the fact that she hadn't eaten anything for a very prolonged period of time.

DR. HALL:  But if I might add, this is a  patient also who is not clearing saliva so again the pneumonia generally kicks in also.

DR. FOSTER:  I was just answering Ben's question about how long whether it would be a month or whatever.

CHAIRMAN KASS:  I would like to ask about the ways in which current public policies whether about insurance coverage or Federal funding or other sorts of things are getting in the way of or not doing what they ought to do to facilitate the best possible care by those families that are struggling.  You have a sentence in the document that you sent us where you say 'Federal policies state that dementia care is custodial.  Those families do not qualify for visiting nurse or skilled-care facilities.'  There are also questions about whether we're doing enough for respite care for the caregivers.  I just wondered if you would talk about the ways in which understandably, well-meaning or perhaps just not sufficiently thought through policies are in fact perversely structuring things or, at least, not doing enough of what they could be doing to make this kind of burden lighter and to make the care of the patients and the caregivers better.

DR. HALL:  In essence, the only real funding for long term care that's available is for people who are impoverished in a nursing home under Title 19.  There have been Medicaid waivers to try and keep people in the home with Alzheimer's longer, but again the family has to be impoverished.

I want to be very clear.  I don't think there is any ideal site for someone with Alzheimer's Disease.  The average family tries as hard as they can for as long as they can to keep the person in the home because of filial obligation, because of the need to preserve funding within the family because of the cost of long term care.  However, some patients do much better in a group setting where there are activities and appropriate care.  Whereas at home, they might be vegetating with no activities and socialization, etc.

However, if only skilled care is covered and we don't recognize that behavioral care unto itself is skilled, we run into the problem of 'I can't get a public health nurse to come out and see one of my patients because Medicare doesn't cover it.'  We're just finishing up a four-year project at the University of Iowa where we have public health nurses that have gone out and done individual visits with families in rural areas.  What we have found is that the families keep the person at home for much longer.  The caregivers report less physical illness among themselves.  They are able to pick up and understand what's going on with the patient.

The average physician today, and this is with all due respect, is pushed to see a number of patients during the day that can be in access of 25.  So the idea that a family physician who had 15 people in the waiting room has a lot of time to go through patient education.  It has to be done somewhere and we find that nurses in the home do a very good job of reinforcing what the physician would want to say, also in basic care techniques that can keep a family going longer.  The other thing is picking up on psychiatric types of behaviors that families find the most problematic and treating them in the home before they result in placement.

So if we could have more funding for respite, yes, families don't tend to want to use respite  until they are absolutely desperate.  But if we could have one thing, coverage for sporadic nursing visits, intermittent nursing visits, would make a huge difference in the quality of life and the patient's ability to remain in the home over a prolonged period of time.

CHAIRMAN KASS:  Thank you.  Janet Rowley and then Bill May.

DR. ROWLEY:  Well, I'd like to follow up on the tenor of your question but focus more on HIPAA because this is a problem in many other areas of medicine and I hadn't really thought of it in the context that you brought from your experience.

CHAIRMAN KASS:  Janet, excuse me.  Does everybody know what this is?  Would you say what HIPAA is?

DR. ROWLEY:  It's a patient health something patient privacy act.

CHAIRMAN KASS:  Health Information and Patient Privacy Act.

DR. ROWLEY:  So that these are in order to protect the patient's privacy from individuals who should not have access to their medical records, the HHS with Congressional authorization has really instituted new policies which are going to have all sorts of untoward bad effects, but I wanted just to focus on the effect of this on the patient with Alzheimer's, on the family and on the ability to try to provide more informed information.  If you could expand on that a little bit and then is anybody trying to help provide feedback, say, to HHS or to Congress where some of these provisions might be modified?

DR. HALL:  Your first question, it's a tremendous effect on us.  We've always had to be careful as providers what we could share with the family and when you have someone who has a dementing illness a lot of the time they are very forthcoming and say, 'Please tell my son or please tell my daughter.  Please talk with them.'

A lot of them though don't want to write that down or if I have a patient who's living alone, I have a lot of patients who live alone, and they are getting into trouble and they are psychotic.  They are living in conditions that could best be described as wretched.  They are not eating.  All kinds of problems are arising or they are being exploited.  If I say to the patient, 'Can I tell your daughter' and they go 'No', then there is nothing I can do under HIPAA.

Now it really has always been that way, but HIPAA has drawn more attention to it.  We also have families who call the physician, wanting to talk with the physician about very often people they are caring for in their own home and the physician can't talk back to them because they don't have a written release  specific to that person.

Alzheimer's is a disease such that you have to have as a caregiver almost an intimate relationship with your providers and it has to be a team of providers so that you have your physician.  You may have a psychiatrist.  You have a nurse.  You have a social worker and everybody has to be talking in order for there to be care that works.  This has just been a tremendous barrier for us.

I don't know of any dementia specific providers who don't really respect the issue of the concerns about family exploitation and who really don't respect private patient confidentiality.  But there are times when you really have to sort of just say, 'Well, if they sue me, they sue' because sometimes a patient's safety is what it hinges on.

Some of us have written Congress people.  I know people on the Alzheimer's list have written their Congress people because it's a huge issue.  Families need access to the patient information.

CHAIRMAN KASS:  Bill May.  Dan Foster.

DR. MAY:  A couple of us were left over from the earlier session, but these two sessions overlap a great deal, Mr. Shenk's presentation and yours.  I would like to make a few remarks bearing on some overlapping points from both of you.  I think somewhere in Shenk's manuscript that he gave us he talked about a death by 1,000 subtracts which was a vivid phrase describing this relentless process of impoverishment that goes on.

But what both of you have also indicated  that there's a death by 1,000 subtracts in a way that can also go on for the caregiver.  It's not simply this progressive impoverishment that the care receiver suffers, but the caregiver.  A vivid phrase is, I guess, Mrs. Reagan's phrase that 'he's gone to a far country.'  Here the person you're caring for has in a sense increasingly abandoned the caregiver.

So you face that problem, do you abandon the care receiver?  But there's not only the problem  of the patients in a sense absent in himself because of this illness and therefore abandon the caregiver, but also the community's avoidance which in various ways is quite understandable.  Again a vivid phrase 'the caregiver becomes a prosthetic device' and the community's tendency to avoid, surely that relates to the caregiver's reticence even to speak about it because they know that it's going to have huge ramifications for their social life because immediate friends and others feel that they have so little to offer.

Maybe in the short run, yes, the courtesy visit, but in the long run, sustained help is very difficult to come by.  And then meanwhile there is the larger problem, societal abandonment that we tend to be acute care gluttons but preventive and long term care anemics in the whole prioritorizing of our budgetary allocations for medicine.  I think that's the point that Leon Kass was trying to drive home.

What are the policy ramifications for all this by way of respite care, by way of the skilled training nurse coming in to offer some education because the day-by-day caregiver needs skills and so they need to be empowered as much as you can offer them.  We don't offer enough either by way of temporary relief or by way of training that would be helpful.

Maybe a further comment or two.  Gil Meilaender has raised across a couple of meetings this question, 'In what sense is the person really there?'  In Reagan's statement, 'He's left for a far country,' I found a vivid phrase.  Gil has tended to argue, 'Well, the body is still there and the person therefore is still there' but psychologically I wonder if there's an important way in which we have to acknowledge that he is not there in order to be there for what we've actually got.  As long as you hammered too hard this is so and so, then you have the problem of constantly dealing at turbulent levels at that question of loss and to what degree psychologically does one need to let go and accept that the person is absent in order to sustain a kind of presence to what is actually there.

I used at an earlier meeting the analogy to the problem of the birth of the child who turns out to have massive deficits.  You may have to bury the dream child in order to be free to relate to what in fact you've gotten. 

Now that comes home in your comments, but also in Shenk's comments on this whole problem of role-playing with them.  Fiblets, you refer to and white lies and so forth.  We feel there's kind of a lack of decorum in playing along and yet both of you have expressed so vividly the way in which you try to force reality on them.  It can be very agitating and I've given overlong comment, but I will offer one story.

I happen to be ordained and I have on occasion, because I don't have a church that I care for, delivered communion to elderly people who could not come for communion and I've been assisted by an elder who goes along with me on such occasions.  On one occasion, I started to bring the communion elements and this woman became very, very agitated.   She said, 'Frank's not here.  Frank has to be here.  Frank should be here.'

My elder was very upset because she was very upset and he went out looking for Frank.  Well, he came back, of course, somewhat sheepishly and said, 'Frank's been dead for 17 years.'  We proceeded with the service, but it was very interesting irony that we were trying to extend community and the very effort to extend community to her reminded her of the experience of community which she didn't have and he should be present.  Afterwards, I told the elder had he returned with Frank I would have thought he was grossly under employed as an elder because he would have raised Frank from the dead.  The ironies abound in trying to deliver care where the person in a sense is absent and how psychologically do you sustain presence?

DR. HALL:  One of the things that hasn't been brought up today that is very disarming for families because they do disengage somewhat.  The person doesn't recognize them and it allows you to disengage slightly, but then they have what we call 'windows of lucidity' where for a number of minutes or even an hour or so, the patient comes back.  It's like clouds clear and then there's this very clear lucid sort of few statements or what have you and then it goes back.  That's one of the most devastating things that families have.

The other thing that — So I work with patients in end stage very often and I see lots of windows of lucidity and I also see that as a patient nears death very often they will have up to a week of not total lucidity but they are a lot more alert and aware than we ever thought they were.  So I'm not willing to say that the person has gone to another place.  I think they are in there, but they can't get out because during windows of lucidity we'll hear things like 'This is awful' or 'I'm suffering so' or 'I hope this doesn't go on longer.'  So to a certain degree for many, many patients right up until the end, they're in there.

The other thing that happens that you talked about that I think it is so critically important is that caregivers as I said in my talk become prosthetics.  Someone once described them as a satellite that totally rotates around the patient and then when the patient becomes placed or worse they die, this caregiver has no reason to exist.  We'll see some in long term care develop very strong relationships and continue to visit long after their patient is dead.  But to reestablish themselves outside of this caregiving dilemma is very, very difficult.

There's a lot of positive things that comes out of a caregiving relationship, a sense of achievement, a sense of accomplishment, a sense of commitment, a sense of survivorship.  So I've never seen a family that I didn't think got stronger from the experience.

CHAIRMAN KASS:  Dan Foster, Gil and then Paul.

DR. FOSTER:  Dr. Hall, I don't know whether you can answer this question and I don't know that either another player has entered in particularly in the issue that we were addressing a little while ago about the feeding decision.  That is that the Pope has made clear that at least the removal of feeding tubes is unacceptable.  I only have read the news reports whether Paul or somebody knows whether that involves also the necessity to place a feeding tube or not.  I don't know, but the question would be do you anticipate even for non Roman Catholics for example because of the stature and influence that this might shift to persons who were near ready to say that artificial feeding is not going to help which I think the evidence is very clear about that.  Do you think that will complicate the problem or not?

DR. HALL:  I've given this a great deal of thought because when I saw it, I kind of went 'Ou.'  I think it doesn't make the decision any easier.  I understood that it was only for removal of existing feeding tubes which by the time someone with Alzheimer's Disease has a feeding tube, usually they don't live long enough that somebody's going to worry about taking them out.

In fact, I reviewed a study for 'Annals of Internal Medicine,' I think it was, that had a staggering statistic like 30 percent of people going for gastrostomy tubes die on the table.  So these people generally don't live very long.  There are some patients who will have bulbar symptoms and they tend to have a prolonged period of feeding tube, but the average Alzheimer's patient does not.

CHAIRMAN KASS:  Gil Meilaender and then Paul.

PROF. MEILAENDER:  Just a quick comment on Dan's.  I think the Pope's statement was about patients in persistent vegetative states.  That's a different issue.

DR. HALL:  No, the end of Alzheimer's is a persistent vegetative state.

PROF. MEILAENDER:  Well, we'd have to talk about that more and certainly, his statement does not distinguish between withdrawing or placing.  That's not the moral issue, but I think the issue is a little different.  But let me just come to what I want to talk about.  There's something that I'm really mystified by, not as a criticism of anything you've said, but just mystified by.  It's not the largest global issue here, but it has to do with the issue of truth-telling.

On the one hand if I got you correctly, you think it's important that patients should know their diagnosis, that it should be communicated.  Denial should just go on forever here and there may be a whole range of reasons.  Maybe you could say a little more about that.  On the other hand, it's probably a good thing not to challenge their reality at various places along the way.

And both of these things individually make sense to me.  Can you just say more about are there certain moments when you're supposed to tell them truth?  Are certain people supposed to tell them the truth but not others?  I mean maybe a professional gives the diagnosis, but the caregiver is engaged in the field.  But just say more about how you see this truth-telling or fudging of reality working itself out.

DR. HALL:  There are two different sets of things that we're really talking about.  The first is should the patient know their diagnosis and there's one study again done by Wayne Karen where he followed patients for a year, those where the family had said, 'I don't think Mom should know what's wrong with her' and the other ones where we've said, 'You have Alzheimer's Disease' or 'You have a brain disease and that's why things are happening to you.'

What happens is if I'm going to ask you or anyone else in this room to give me your driver's license and then I want your MasterCard and what else have you and I say to you, 'There's not real reason for this.  You're just kind of getting old,' well, you know that all of your friends are old, too, and they're not surrendering their license and their MasterCard and so what happens is we get this artificial barrier that goes up between the family and the patient and the family becomes the enemy.  Wayne in his research found that where families did not share the diagnosis, people became extremely paranoid and were often on medications within a year for the paranoia.

Most health professionals that I work with including myself will talk to the patients in a very kind way about the fact that they have a terrible disease and that this disease is a brain disease and sometimes we'll use the 'A' word and sometimes I don't depending on what the patient prefers.  But most of us believe that we are obligated to tell our patients what's wrong with them because they are our patients.

What the family does with that in terms of the diagnosis is very much a family decision.  I've had families talk very eloquently about how they don't see any need to put their loved one through pain.  But if I have a patient who's saying 'What's wrong with me' or 'I think I'm going crazy,' those are very common things, then I want that patient to know that they're not going crazy but they do have a brain disease.

The other thing is the therapeutic fiblet and this is where the patient, usually due to some reminiscent things that are going on, believes that their parents are coming for them or they believe they have to go to work today or they have to go out and harvest or what have you.  A careworker will say, 'Well, you cut the grass yesterday.'  That's a therapeutic fiblet. 

Recently in the Geriatric Nursing Journal, someone asked an expert about that and the person said, 'This is unethical.  You're lying to the patient' and on and on and on.  It's a real issue of dissent between families and families, families and professionals and professionals and professionals.  Is there a place for therapeutic fibs or do we do truth telling all the time?

In the whole scheme, it sounds like such a huge issue, but particularly when I'm training young health professionals and they say, 'You lied to that patient,' it's a comfort measure as much as anything.  Saying to a patient, 'Your mother is dead' over and over and over again certainly can produce a lot of negative and uncomfortable responses.  Where if you say, 'Tell me about your mom.  Are you thinking about her?' etc., can produce a whole different realm of experiences.

CHAIRMAN KASS:  Gil.

PROF. MEILAENDER:  This is just a question to ask out of ignorance.  It's a little different from the truth telling question, but if my physician formally diagnoses me with Alzheimer's, do I have to relinquish my driver's license?

DR. HALL:  Only in one state.  California.

PROF. MEILAENDER:  Okay.  Well, I don't plan to move there.

CHAIRMAN KASS:  Just before Paul comes in, is your puzzlement about the truth telling question resolved?

PROF. MEILAENDER:  Well, it must not be because the Chairman doesn't think it is.

CHAIRMAN KASS:  No, it was resolved for me, but it was not a puzzle to begin with which is why I wondered whether you're content.  It seems to me in both cases it's not some loyalty to the abstract principle of telling the truth, but in both cases, governed by what the professional regards as in the best interest of the patient and the family in this.  As the circumstances change, what you say and there are questions about how you speak and when you speak and all that, but the presumption that the patient is better off knowing that he or she has the disease is perfectly compatible with the presumption that the patient is better off not having their reality or their errors corrected.

PROF. MEILAENDER:  Look, yes, I agree with that and I understand that and I also agree that thinking about what is really in the person's best interest is actually the crucial question to think about there.  It's just that it seemed to me without having communicated this, it's not as if I spent my life communicating this information to people, that a person might resist the information as easily and even more strongly at the start.

I can imagine many people  resisting the communication of such a diagnosis and yet at that point, there seems to be a felt need or importance to get the diagnosis across whereas at some other point in a certain sense, you've just let it go.  I was just trying to figure out how that works.  That's all.

CHAIRMAN KASS:  Good.  Paul McHugh.

DR. McHUGH:  I'm not sure I'm going to get this to a question.  I'm going to start it with my admiration for you, Dr. Hall, and the wonderful things that you've achieved and the things you've done to help patients and also to build up this concept of a team of people needed to care for the patients suffering from this condition.  I'm full of admiration for that.

I also believe that this success that you've had and these good things that you've had have come from benefits from taking care of these patients and these families.  I was happy to hear in really the other question you said that lots of positive things came out of this.  In order for somebody like you and me who knows a lot about Alzheimer's patients really should tell the group about the benefits that come to families and to the caregivers for caring for these patients and for bringing them through this ordeal.

The problem for me all day today has been the great emphasis, and it's important I suppose to instructing others, of the burdens, the aches, the pains, the distress of this disease and what it brings to everyone.  In that process, we spent a lot of time talking about pathology, pathology of denial, betrayal, prosthetics and the like rather than talking as well that comes along with it and I'm sure that inspires you the great achievements that come.

Now people who are my age and have lived in families before 1960 about, about 1960, almost all of us had family experiences with sick, infirm, demented patients in the household.  It was only after about 1960 that we've shifted to the idea that this is so awful that we have to pick everybody up and get rid of them and get them off somewhere.

Now when I was a young person living in my household with actually two people elderly and in their 90s that my mother was caring for, there was an important not only blessing from that that came from that right at that noticing what was happening and how people felt about one another, but it was also important for the children, the family, the world outside that this is the truth about human kind that we live our affections, our loves, in fact, express themselves as we believe through the flesh itself.

How do you learn not to burn out in this process and simply emphasis the pathology?  How do you help the family?  I'll put it a better way.  How do you speak to the family so that their interest in caring for these cases is brought to the fore and emphasized for them so they can see the positives that are going to come because there are going to be positive days?  Again you emphasize the phases of this condition.  In the early phases of this condition, it's not terribly awful to take care of most patients with Alzheimer's Disease.  How do you weigh for the family and for everyone else the positive things that are going to come that include not only the care, the caregiver, the patient, but the broader context in which where you use to be accustomed to this side of life?

DR. HALL:  That's a really great question.  When I was working at the Mayo Clinic, I was seeing seven patients a day and one of the clerks came up to me one day and she said, 'You know people come into your office and they're just dragging and they walk out and they're just dancing.'  She said, 'What is it you do in there?'

I do two things.  Well, I guess I do a bunch of things, but (1) I talk about the disease objectively that this is a disease and we're going to get through it.  We instill hope.  We use humor.  I do a lot of teaching families how to look at it with humor.  You talk about storytelling.  One day, I was sitting with one of my caregivers who was a nurse.  She was a surgical nurse and she wanted to cut something out.  She said, 'What can I cut out and then it will be better.'  I said, 'Nothing.'  And her husband started to ask a question and she just lost it.  She said, 'Don't ask that question again.  Don't ever ask it.  I've had it.  You can talk about anything you want, just don't ask that question again.'  And he turned around and he looked at her and he said, 'Well, let's begin with freedom of speech.'  She fell on the floor and I fell on the floor and you teach people that it's okay to whine, that they have humor.  We teach them a lot about control.

My primary area of research has been a model called progressively lowered stress threshold which says that there are six things that will produce problem behaviors and what we do is we teach caregivers to choose how to control for those six things, including fatigue, change, the level of stimulus and a bunch of other things.

Once caregivers get that idea, my research shows that we have decreased hospitalizations, we have decreased nursing home placements and we have statistically significant decreases in 9 of 11 behaviors including psychosis so that they are empowered to use that disease.  Then I'm just there for them.

CHAIRMAN KASS:  Bill Hurlbut.

DR. HURLBUT:  I want to ask you a question that I hope will come up in our next session, but I want to get your perspective on it.  It's a bit of a broader question than just Alzheimer's Disease.  It has to do with the whole question of the changes of aging and in saying this, in asking this question, I don't mean in any way to question the difficulty of this condition nor to erode the notion that we should work for a cure of it.

But during the lunchtime, I was talking with Dr. Selkoe about the sense in which our society right now seems to have replaced its fear of cancer from about 30 years ago with a fear of Alzheimer's Disease.  I understand why being at the heart of what we see as our humanity that sense of loss of mental function is a touchy subject for us.  Nonetheless, we also sense that there is something about Alzheimer's Disease that also has a quality that's benign.  It's like a slow turning down of the volume or a soft ending of a symphony.

Now I don't want to any way romanticize that.  I just want to ask you for your perspective on how bad is Alzheimer's Disease versus other ways to die and to what extent does this mean that we should or shouldn't take extra consideration of the meaning of dramatic interventions?  I'm thinking of a full range of things because from listening to Dr. Selkoe, it's obvious that there might be treatments that start as early as late childhood or early adulthood.  There  already are possibilities for preemptive interventions in the very existence of the patient by prenatal screening or preimplantation diagnosis and then we might see later during the manifestation of disease many questions about how drastic a risk do we want to take to treat the patient.  Could you put this all in this larger context of what Thomas Cole was trying to deliver to us this morning that very fascinating question of the meaning of our frailty and fit it into the intractable vicissitudes and acknowledging that there might be something spiritually salutary about our transition through what he called the heroic process of humiliation?

DR. HALL:  Okay.  I'm going to begin with the part I can deliver first and that is the comparison of a frail person's death with an Alzheimer's person death.  One of the things that we really haven't addressed here is just how difficult the care is to provide.  It's not a simple matter of grandpa fading away.  People with Alzheimer's Disease very often don't go gracefully or quietly into that good night.  It's not 'Gee, I can't bathe.  Can you help me?'  It's like 'I've already bathed and if you touch me, I'm going to fight you.'

What we see are the most negative of our personality characteristics coming forward and our ability to communicate verbally and in written language or anything what we want at the most basic level.  So that about two-thirds of the way through the disease, you have someone who's talking word salad.  They are resisting personal care.  They're not just incontinent, but they're fighting you because they don't want to wear an adult protective device.

With someone who is frail if I'm providing care, I'm providing the bathing and the dressing and hopefully once I'm past that and the provision of medications, they are autonomous.  They can tell me how they want to spend their time.  A person with Alzheimer's Disease once I've gotten past the bathing and the medication and that sort of thing, they don't know what to do.  So if I don't fill that time in a meaningful way for them, they are going to be tearing the wallpaper down.  They are going to be wandering.  They are going to be eating the plants.  It's very much like having a toddler.  If anybody was in the food court at noon watching that child pitch a fit, that's very much what you have in many stages of Alzheimer's Disease.

The other thing is that when you have a toddler who is developing, you have someone who is following a predictable course and once you've seen one patient with Alzheimer's, you've seen one patient with Alzheimer's.  You cannot generalize other than some common things about the pattern of decline.  But basically as different as everyone else is in this room, you're all going to cope with it very differently.  So it is a more horrible death.

The other thing is that once you have a patient who isn't seeing and hearing what the rest of the world sees and hears there are people in the house  that are afraid of their own mirror image.  They are afraid of moving things.  It's just extraordinarily difficult and demanding.  If I can't ask you to modify your behavior, if you're keeping me up at night.

I used to have one patient get up.  He would go to bed at 7:00 p.m. so that by midnight, he'd pretty much had a night's sleep and then he'd go out into the garage and play the drums.  So it's very much up to the caregiver to manipulate everything around the patient in order to produce the type of result that needs to be gotten.  You know.  How many rest periods do I give a day?  If he says this, how do I respond in a way that's not going to be a battle?

Alzheimer's caregivers become very good at choosing battles because you never know what's going to produce in essence an explosion.  For that matter, that's what makes the difference and that's what makes the heroics.  Most of us in this room, I would dare say that everybody in this room, are people who really enjoy a good puzzle and taking these complex concepts and untangling them.  The idea that the person you love most in the world can't do that anymore and that you have to rethink everything you do with them in order to produce a response that isn't going to be an explosion, it's extraordinarily stressful.

CHAIRMAN KASS:  Could I piggyback just briefly on the direction Bill was taking?  I was going to ask Tom Cole earlier when he was showing us that wonderful iconography of the different views of the life cycle.  It didn't seem to me that any of those people in those pictures of the staircase up and down  that the people on the way down looked more or less like they did at the top only a little more wrinkled.  It didn't seem to me that the period of decline included something like this kind of devastation.  Whether it was known then or not, I doubt it.  But it was a certain graceful decline to the end and it had a nice shape where this is a very different kind of end.

On the other hand, this is done in certain passages in David Shenk's book and I wish I would remember them rightly in which, and he's still here so he could correct, there's at least a suggestion that although it's a particularly horrible disease and the rapid disappearances of all aspects of identity and self and not just cognition, but all of those things that you really listed for us, that in some ways that really is an emblem of the ultimate loss of everything.  Part of the reason that we hate it so much is not because it's gruesome but because it's a kind of compressed version of, forgive me, the ultimate truth of the matter of human life.

So the question is whether this is some kind of bizarre thing which if we erased it, we will find somewhere, we will return to that curve in which we will go out gently as Rebecca was asking earlier 'What will you do once you get rid of this' or whether there are things to be learned about who we are and the way we relate to those whom we love who have this and in a way of relating to our own limitations.  I think that's partly Bill's question.  As a person who has been in the trenches, mostly in the retail business, but also here in the wholesale business, it's quite clear.

What do you think about this?  I mean is this really just an aberration or is this somehow revelatory of things that all of us really have to learn whether they are going to find the immunization for amyloid or not?

DR. HALL:  I don't know.  It's a very interesting question.  It's the first time that I've really thought about it was this morning.  I don't know.  Are we going to find that there's something worse than Alzheimer's?  It's kind of hard to imagine if we do cure it.  But it may be that Alzheimer's serves a purpose in society in terms of helping us be better people or what have you, but it's a real tough way to learn.

CHAIRMAN KASS:  Yeah.  Peter and on the same point, Gil, or something else?  Okay.  Peter, will you hold or do you want in on this?

DR. LAWLER:  No.  A different issue.

CHAIRMAN KASS:  Okay.  Let Gil in on this  same issue.

PROF. MEILAENDER:  Just to clarify, you had said before that, I guess not all the time, but often a person's worst traits come out in the end and that would mean different traits, I guess, depending on what the person was.  That's interesting to me because to the degree that that's true, that means you don't actually lose all aspects of yourself.  Different people will go differently into this.

If that's true, there is a certain kind of continuity.  Now it may be if I think about my worst traits that may not be a pleasant thought.  But it's interesting to me because it connects with this larger question of identity and it may, in fact, be that we  come to that end stage differently because of the different people we are and have been.  Is that possible?

DR. HALL:  We absolutely come to it differently.  That's what I meant when I said 'When you've known one person with Alzheimer's you've known one person with Alzheimer's.?  What happens early in the disease is that you lose the ability to inhibit things that you normally would have not said.

The most common example is the elderly person who has been a church-going, devoted grandma all her life and suddenly learns to say words that would make a sailor blush and the family comes to you and says 'When did Grandma learn that word' and 'We've all known that word.  It's just she never used it in polite conversation before.'  So the person is not able to inhibit the more negative aspects.  The parts of your personality that you've been hiding are going to be right out in front.  So for those of you who are a Type A, you're going to be the little elderly person in pink fuzzy slippers, but if you're me, you're going to be driving and you're going to taking airline flights and doing all kinds of things and the minute somebody tries to limit someone like myself who is very autonomous you get fireworks.

PROF. MEILAENDER:  Are there no cases or small percentages of patients who go out sweetly?  I'm thinking of the patients with frontal lobe injuries that were known as being sort of passive, but some of them were also sweet.  I'm wondering if you see that or if it's always the worse coming out.

DR. HALL:  No, I have a lot of truly sweet patients.  It's just that those aren't the people where the family comes and says, 'I'm tearing my hair out.'

PROF. MEILAENDER:  But then it's always the worse.

DR. HALL:  No, it's not always the worst.  It's more likely than not that a lot of the worst comes out though.

CHAIRMAN KASS:  Last comment of this session belongs to Peter Lawler.

DR. LAWLER:  Everything said in the last few comments is what I wanted to say which amounts to this.  There is something strange about Alzheimer's because it's such a truth telling disease.  If you go to the doctor with cancer, you are immediately given hope where this or that aggressive treatment will cure you even if the chances are fairly slim.  Still you're given hope.  It's not exactly a lie but rarely is there absolute necessity connected with cancer of 'Maybe if we try this, we can fight it off.'

But with Alzheimer's, you can say you come with many differences, as we've talked about, but within the scope of the differences, it's predictable.  This is going to happen.  So it's essentially from a merely physical point of view rather hopeless.  You know you're going to die and something else might kill you, but in terms of this disease, this is going to happen to you and things are always going to get worse.  There may be the ware of good days, but in general you're going to be in this decline.  It's predictable.  We can see it.  You're going to regress to what you were at the beginning.

And early you said this that when I describe this objectively to the patient, I then give the patient hope.  But you didn't say what you said to give the patient hope.  What do you say then'

DR. HALL:  I give the patient hope that first of all medical science is developing treatments.  It was only in 1997 in January that we got our first even marginalyl effective medication.  For many of us who are clinicians, that has really changed the tenor of our practice.  We're seeing our patients earlier.  We're able to do a lot of patient education.  We're able to tell them that we are going to be with them.

I would suggest to you that the largest fear of Alzheimer's Disease is abandonment whether it's abandonment of the patient or abandonment of the caregiver by society, by healthcare professionals, etc.  If we reassure them that we will be with them, that we will help them have access, the first question that a caregiver is going to ask me is, "When is he or she going to be violent.  When you say, 'Well only a very few patients become violent and if that's a problem we'll deal with it,' they go, 'Okay, I can deal with that.'  It's eating the elephant one bite at a time.  Could I make one last statement'

CHAIRMAN KASS:  Please.

DR. HALL:  One of the biggest problem we have though that this Committee could probably address better than any other committee is the issue of partial autonomy, the patient who is still able to participate in some of the decisions that affect them deeply, but they are not able to make those decisions entirely alone such as the patient who needs help with managing finances or the patient who needs help with transportation or placement issues.

At this writing, there is nowhere in the country where we have anything like partial autonomy so that you either have decision making capacity or you don't.  And so many people get their rights removed either very, very late in the game after terrible things have happened or too early in the game which is a terrible thing for them.  That's a huge critical need.

CHAIRMAN KASS:  Thank you very much.  Thank you very much, Dr. Hall, for a really wonderful discussion/presentation.  Look, here's where we are.  I budgeted a half hour for us to talk amongst ourselves in the light of what we've talked about today to see where in this large area of dementia and the ethical and social issues at least what we might think about taking up down the road to focus this a little more carefully.

I'm not sure that everybody has this well formulated and we need to do some digesting after this day, but I would at least like to have some preliminary reactions and discussions.  Let's take ten minutes, but really make it ten minutes.  I want us to be through at 4:15 p.m. so we can get over to the museum.  Thank you.  Off the record.

         (Whereupon, the foregoing matter went off the record at 3:37 p.m. and went back on the record at 3:49 p.m.)


SESSION 4: AGING, DEMENTIA, AND SOCIETY

CHAIRMAN KASS:  On the record.  Could we get started? With respect to the tour of the Deadly Medicine exhibit, people have asked whether they can go on foot rather than by cab.  It is a short walk providing we know where we're going.  We are, I think, here at 13th and Pennsylvania, but I don't know which door out is 13th Street.  Which is—  Laura, you'll find us to the 14th Street exit.  We'll walk together.  It's a short walk.  Others will come by cab if they like, but if we leave here at 4:15 p.m. we'll be there well in advance of 5:00 p.m. and we can get some fresh air if it's not raining.

Also before we start, I want to ask.  Professor Binstock and I were chatting briefly at the break about the questions of policy affecting these matters.  That question came up in the last session and he had something very interesting that I think he would like to share with the group.

DR. BINSTOCK:  Last week, I was at a meeting of National Academy of Science that was mostly attended by health economists in which they were looking at the notion of establishing national health accounts.  Up to now, all they've been doing is national health expenditures, from what source and how many services and so on.  But now they are looking at the idea of health status and what are the inputs.  What's particularly interesting is that they have a broad notion of inputs which I think are very relevant to the Alzheimer's situation which we've been discussing.  So, for example, one of the economists unusually declared that informal, unpaid caregiving should be an input into national health accounts even though it's not a traditional medical service and it's not being paid for in cold cash, only in sweat and tears and so on.

And then on the other hand, I began to say "Wow", and for the health status of caregivers, you could have a lot of inputs such as respite programs, adult daycare programs, caregivers support programs, all of which the Federal Government is supporting in one way or another, well, not respite programs.  But in any event, now what that means is that down the line some of these things may very well shape up as policy foci for potential support if this development gets off the ground and it would certainly hasten that sort of a thing.  So I just thought I'd let you know that there is something out there.  If anybody is interested in following up from the staff, it's the DBASSE committee, D-B-A-S-S-E.  I used to know there was a CBASSE committee there.  I don't know what the D stands for.  They have now graduated, but it's Behavioral and Social Sciences and Education.  I don't know what the D stands for.

CHAIRMAN KASS:  Thank you very much.  This little session at the end of the day is meant to be a preliminary taking stock of what we've heard and where we might go next in this area.  There have been a couple of topics suggested to us by our guests of things worthy of our attention including questions left by Professor Binstock himself at the end about old age based healthcare rationing, questions about aggressive medical treatment in patients who have Alzheimer's Disease.

Dr. Hall raised with us the question at the very end of her remarks about exploring the category of partial autonomy, something in between this binary condition of you think you are  autonomous and you're not and that seems to get in the way of all kinds of important decisions.  There are questions having to do with issues of health coverage for certain sorts of matters.  There are questions about the limitations of the Health Information Patient Privacy Act that is an obstacle to things like getting the caregivers the information that they actually need to give proper care.  These are particular topics on which we could either invite further comment or do some writing.

There were also some of the questions raised implicitly about truth telling or the question Michael Sandel raised earlier about the moral status of this diminished—Put it the way you want to put it.

PROF. SANDEL:  I wouldn't use the phrase 'moral status.'

CHAIRMAN KASS:  I know.  Yes, if you hadn't correct me, he would have.  In any case, we have questions that we can fish out of the transcript.  As far as the Staff has thought about this in advance, since from the quality of the people you realize that there have been people out there thinking about these topics for a long time that it's not for this Committee to reinvent the wheel or to do a lot of staff writing here.  But one of the things that has occurred to us is that we could on the basis of these discussions and your input lift up to view some of the best things that have been thought and that are being thought in the form of a series of commissioned papers once we identify the topics and identify the people for which we, Staff and Counsel could write suitable introductions, suitable conclusions and make as a matter of much more visible public attention some of the best thinking both about the science, the clinical care, the life cycle questions and some of the ethical issues that this group at least could identify and invite other people to comment on.

But that's one possible thing that's occurred to us.  I know that there are people in the room who have spoken and who have other things to say, but we are free to develop this topic as we would like.  It's clearly an important topic.  The question is whether we can do this in a way that would be of some use and some help to the public.  I just open for general comments or specific suggestions.  Ben.

DR. CARSON:  Well, in the first sessions in the morning, we talked a little bit about aging and perhaps the shifting definitions of who is old, etc.  Obviously when we look at this compared to the last turn of the century before this prior one, we were looking at an average age of death in this country of 47.  We're close to doubling that now.  At the rate we're going, we will probably add substantially to the average life span.  At some point, I think it might be a wise thing to discuss the question of because we can prolong life to 200 should we do it and what are the implications for society for doing such things.

CHAIRMAN KASS:  Frank Fukuyama.

PROF. FUKUYAMA:  Well, I have a purely ethical rather than public policy issue that I think we should discuss which is what are the obligations of the caregivers to the elderly under the current technological circumstances because it seems to me everybody by nature grows up understanding that they have obligations to take care of dependent people at the beginning of life when they have children and at the end of life when their parents get old.  A lot of the pictures that were displayed by Dr. Cole suggest that understanding of the cycle.  But it seems to me that modern biomedical technology has greatly intervened to distort that cycle in a lot of ways.

It just seems to me from listening to the discussion of what Alzheimer's is that in a way it's a clear byproduct of all of the other cumulative advances in biomedicine an unintended consequence.  As I understand it from the presentation from Dr. Selkoe, you have this polymorphism in this item that's not a gene, but it's a protein that has obviously, well, it's produced by a gene, a very positive impact in early stages of life, but in later stages of life, it leads to the build-up of these amyloids.

You can see how in evolutionary terms the former characteristic was selected for, but most people in hunter-gathering societies didn't live to the age where the negative effects could take place and so there was never any evolutionary pressure to select against that particular characteristic.  Now we've managed to alter the situation such that you have this extremely unnatural disease.

Now the question is I think everybody feels a little bit guilty that we now ship our parents off to nursing homes rather than doing what we would all like to do which is to care for them at home.  The question of obligation is a really complicated one because do you have the same degree of obligation when you are facing basically a terrible disease that no one has ever really had to face in human history before where you have a ten year period of this very gradual, very high level of dependence that requires especially in the later years a much higher level of commitment.

Now previously when all of this was done in families, it was also dependent on certain social structures that no longer exist.  Either you had very large kinship systems in which you could have collective responsibility for the elderly.  Quite frankly, in traditional American society and this continues to this day, a disproportionate obligation for caregiving is on women and particularly if there's a family and there are siblings, it's always the daughter that ends up spending much more of her time doing this sort of thing.  In a traditional society, that worked because the women were not in the workforce and basically they made the transition from taking care of their children to taking care of either their parents or their husband's parents.

Obviously that doesn't work in present circumstances and so what are the moral obligations for people'  How guilty should we feel for asking either that professionals take over this responsibility privately-funded or to what extent is there actually a public obligation to relief families because in fact this is a good case, since it clearly has a genetic cause and it's not equally distributed among the population, for the socialization of the costs and risks of this disease which is a good case, I think, for a public intervention to equalize outcomes.

CHAIRMAN KASS:  Thank you.  Peter.

DR. LAWLER:  Just to add to what Frank said, it seems to me the big issue lurking all day is the status of voluntary caregiving in a highly individualistic, high tech society.  What Professor Binstock said this morning in effect is our health system would collapse.  We would all go broke if most of the caregiving wasn't done by the family and in fact, most of the caregiving wasn't done by women.

The burden is greater.  Alzheimer's just being one example.  The resources are going to be less in certain respects with women working, with fewer children, more elderly people.  More people unless the cure is discovered are going to have Alzheimer's and other debilitating diseases that aren't as bad as Alzheimer's but plenty bad.

So it's not just an ethical issue, but it's a question of what sort of support government should give to voluntary caregiving especially since there's not only a necessity, but there are all kinds of rewards as Paul talked about that is a large part of being human and seeing the truth about things.  Children should see people die even long agonizing deaths.  It's not as bad as clinical evidence would suggest.  So I share the nostalgia.  I'm not old enough to have it, but I share the nostalgic thought  then.

So is it good for our economy, indispensable for our economy and maybe indispensable  for our souls to encourage not just in the abstract ethical way, but it should be public policy encouraging voluntary caregiving because from the  point of view of justice, this may point to socialization.  But there is really a great loss there, so maybe we ought to sacrifice a little justice in the name of love.

CHAIRMAN KASS:  Michael and then Gil.

PROF. SANDEL:  There's a lot that we've learn and that we can learn from the kinds of presentations that we've heard and much of it also that's very moving in a human way and there's a lot we could discuss about various public policies to do with the healthcare system and questions of resources which, for the most part, this group has not taken up under the heading of bioethics though it certainly could fall under that heading.

I'm not sure that we have a question here really that we can contribute that we're well equipped to contribute to.  So I hope that we can have as an open question here in this discussion and later whether this really is something where we can make a contribution.

I haven't been able to wrap my arms around any focused ethical question that we could argue through and really make a contribution on.  Important though it is, informative though these issues are and moving though it is, I don't think we want to be in a position of issuing merely hortatory kinds of reports.  We could delve into the resource questions which are hugely important and vexing, but unless that's what we want to do, a focused ethical question on this topic so far I don't think has presented itself of the kind that we're equipped to contribute to.

CHAIRMAN KASS:  Someone want to join Michael or Gil.

PROF. MEILAENDER:  Well, I want to propose a focused ethical question.  Does that constitute joining?

CHAIRMAN KASS:   I suppose that's an answer.

PROF. MEILAENDER:  I mean I've been thinking about this for a while because I think in what we've done up until this meeting and even more so, what we've done in this meeting, what we have is an enormous amount of really rich fascinating material, but also a sense that you're kind of going round and round and not quite sure where it might go.  I think there is a direction that we could take a little piece of it and actually give it some focus and say something that I myself believe would be useful to say.

Here's the way I would put it.  I would start from the issue of advanced directives that we looked a little bit at and if you actually look at the history of it, the history of the development of advanced directives a quarter century ago was mainly to move from a perceived medical paternalism to a more autonomy based system where a person's own decisions could take effect.  What I think we could really usefully do is question that movement and question whether a return to a certain kind of understanding of best interests specifically now with respect to aging, demented patients wouldn't in fact be an important thing to do.

So that we could begin with the history.  We could look at the mounting evidence that the turn to advanced directives has failed in fact.  I think there's an awful lot of really powerful evidence that it hasn't in fact worked.  We could take up some of the philosophical problems about identity and continuing one's identity in the future that we talked about last time without turning it into a philosophical paper and then we could think about what it would mean particularly with respect to this group of patients to think more seriously about not just extending their autonomy into a period where they don't have it anymore, but thinking in terms of their best interest about participation by a whole range of people, the caregivers, the patient while the patient has partial autonomy, taking up that partial autonomy issue that came up, some of the issues about who had to have information that the HIPAA discussion raised and  we could actually say something that in a certain way redirected policy to a degree, redirected it by paying attention to some very practical issues to some larger philosophical questions and focused it on the particular class of patients, namely the demented aging patients that we've been talking about.

Now that would leave to the side a great deal of other really rich stuff that has crossed our path along the way.  It might be that the kind of collection of essays that Leon was talking about done in conjunction could as it were pick up some of that rich stuff, but it would also give us a more focused project that seems to me to be within the scope of our capabilities to do that relates to some of the things we've talked about.  So something like that is at least one idea for how one might pull some of this stuff together and give it a focus.

CHAIRMAN KASS:  Comment to Gil's suggestion or other suggestions?  Dan, did you want to speak to Gil's idea?

DR. FOSTER:  No, I'll wait.

CHAIRMAN KASS:  Mary Ann, then Dan.

PROFESSOR GLENDON:  Well this is in response to Michael's question and further to what Gil said.  It seems to me that there is a value in making more visible much of what has surfaced here today, not necessarily trying to answer the questions or even make policy recommendations.  But suppose we ask the question 'What is likely to happen in the not-to-distant future knowing all that we learned today if things just continue the way they are continuing?'  Is it fair to say, the experts here could give us an opinion on this, that there is a crisis looming because of the confluence of a number of circumstances, the continually expanding population of dependent elderly persons, many of whom have Alzheimer's but there are other kinds of frail elderly  with greater longevity.  Where are the caretakers to come from?

Paul evoked a time that some of us can remember when caretaking took place in the home.  That was a time when young adult women were at home.  That population of caretakers has disappeared.  Right now, what we have with Alzheimer's very often is a elderly person taking care of another elderly person.  So if you look at these developments, the movement of women into the paid labor force, then the expanding population of the frail elderly, the fact that there is certain stigma as Bill so eloquently wrote in his essay long ago attached to the condition of being dependent, that stigma also attaches or at least a lack of recognition and reward attaches to people who care for dependents and become dependent themselves in the process of caring for dependents, I think it's a useful service and one with ethical dimensions if we lift that up, make it visible and maybe suggest that attention needs to paid to recognizing, rewarding and compensating caregiving.

CHAIRMAN KASS:  Dan.

DR. FOSTER:  I don't think I have anything very profound to say, but what I'm worried about is something you've really hinted at.  I mean these issues that we've heard this morning by the very presence of experts and large numbers of people who have addressed both economically and in some sense make me worried about what the council would have to say about that.

I'm sure because the Staff writes very well and then we spend weeks and so forth editing these reports, the reports have been usually pretty widely praised for their content, but it would be hard for me to get really excited about simply reviewing the evidence about the aging and about Alzheimer's and so forth.  I mean to write a philosophical report about this which the literature is already filled with might bring it up to the business, but I'm not sure that that's what we are designed to do.

We started off with cloning— Most of the things that we've done have been sort of certainly pressing problems.  We started off by cloning.  We've talked about stem cells.  Even the 'Beyond Therapy' document had to do with questions that are serious questions for the future that had not really been addressed in the same way that anybody had done.  I mean we talked about some of them.  Ben wasn't there at the time, but at the time we did talk about making people live a long time.

So the question is in 'Beyond Therapy' — I mean 'What it Means to be Human' background material was widely received.  So we can write good papers that a few people will read and think that they are — And we'll probably get it in The New York Times either pro or con or something like that.

But I just don't see anything at least so far to me that grabs me to say this important that a national council — Remember we were told at the start that a council is the highest advisory body to the Federal Government.  It's not a commission.  I mean it's not a committee to do it.  It should address things of high interest and there was a national interest and there's a continuing national interest about the issues that we started off with.  That is the two goods that we talked about, a calling for research and so forth.

Even our last document was of an important issue which we were unanimous on because it at least gave some guidelines to maybe breaking the deadlock in the Congress about what to do about more cell lines and so forth.  You remember that we'd ignored the whole issue of cloning for research at that point.

In one sense, I mean colleagues would say — I've had several people ask me and I've mentioned this.  Leon, I said I wasn't going to say anything about this, but not for any decisions here, but a lot of people say 'Well given the things that have happened in the country, the Reagan death, the Sapphire article about Reagan's legacy, about additional lines and things of that sort, when is the council going to look at these issues again?  Everybody else in the country is talking about it and there is an absolute silence from the Council on Bioethics about it.  That may be valid.

We've made our decision as to what we do, but things do change.  You have 51 Senators who are saying we ought to get more lines and so forth.  I'm not addressing it all, somatic nuclear transfer.  I don't think — So I just don't find myself excited about the sort of things that have been suggested here when we have such a vast amount of material.  If you want to do what Janet raised about the distribution of resources for medical care relative to the aging or to the non-aging, that might be something to do.  But I would hope that we would come to a question that would make you want to come to Washington to spend a day and a half and address your time on that is at a level of ethical content that might be considered major rather than an ethical question which many people might think was minor and I think we ought to address the — I would hope that if we're going to do something in this, we ought to —

Now there are a lot of other things that we could talk about that I think might be more major  but I'm not going to go into those things.  That's my concern.  I'm not really excited about anything I've heard so far that would be at the level that I would think that a national council should address itself to.  I think that National Academy of Sciences or the Institute of Medicine could address these issues because they're not in some fundamental sense major ethical problems I think, but maybe I'm wrong on that.

CHAIRMAN KASS:  Charles, Rebecca and we'll stop.

DR. KRAUTHAMMER:  I was saying to Mike Gazzaniga during the break that what was refreshing about today is we've gone a whole day without talking about embryos, but I spoke too soon.

DR. FOSTER:  Forgive me, Charles.

DR. KRAUTHAMMER:  Well, you set me up for that one.  I would stay away from discussing the economics.  It is the huge issue.  It is the looming issue, but it's a political issue and I think that the people on the Hill are much more equipped and they have politics as the authorization allocation of the resource.  I think I would leave that to the politicians.  It is an important issue.  I'm just not sure it's ours.

I had exactly the same line of thought as Gil.  What intrigued me and I don't know that it rises to the level of national crisis.  It doesn't, but the most interesting issue I think is the issue of autonomy.  It is related exactly as Gil had said to the earlier discussion we had on advanced directives.  It seems to me in Alzheimer's you have a gradual loss of autonomy and in advanced directives we're often talking about a sudden accidental, catastrophic loss of autonomy and what do you do?

I think it's an interesting issue.  I don't know that it's been dealt with at this level and I think we might contribute something.  I was interested that our last speaker who's been involved with Alzheimer's for 20 years make a plea at the end for us to look at this issue of the binary on-off, yes-no, autonomy status that we now have legally.  I think that if we thought about this, it's a much broader issue.  I think it would open up other areas.  But I think it would be interesting. It would be focused and it would not be cosmic, but it would be worth our while to do.

DR. FOSTER:  Can I just respond to that?  We've been using the public language of autonomy and doing no harm and justice and benevolence for a very long time.  It's the public language of bioethics.  The thing with autonomy began with the National Commission.  It seems to me that autonomy may be this is so different from other aspects of autonomy but whenever autonomy is impaired we have a responsibility to meet it.  I don't see why you're excited about doing something about that.

To tell you the truth, I'm actually — I've read so many papers on autonomy that I think that where we are now that it's sort of boring.  All we've done, let's say, is change from taking care of somebody with Down's Syndrome or something to somebody who is at the end where they have multi-infarct dementia or Alzheimer's dementia.  What is the difference between an impaired autonomy at one stage or another or one disease or another disease to do it?  I mean why would that be exciting?

DR. KRAUTHAMMER:  I don't think it has to be Alzheimer's specific.  I mean when you talk about advanced directives it's not Alzheimer's specific.  I think what we did hear in the discussion of advanced directives is that the system that we thought was a solution in the hay-day of autonomy 30 years ago and everybody assumed in all aspects of life, marriage and divorce and sexuality, that autonomy is the answer, we've been rethinking autonomy in a lot of areas of life and seeing its unintended consequences.  This would be an interesting area to look at it again.

Again I'm not making a claim that it's going to revolutionize our thinking, but I think it has practical implications.  People are telling us the system that we had devised is not really working.  We might have something to offer as a practical alternative.

CHAIRMAN KASS:  Rebecca.

PROF. DRESSER:  See I have exactly the opposite view from Dan as far as what's important for a Bioethics council to take up and I think this is a problem with the field.  We get caught up in these sexy topics like cloning and stem cell research and I think they are very important because they are new issues and somebody needs to think them through, but there are all these everyday ethics issues that really affect people so much and we have a lot of writing on autonomy, but a lot of it is not very good.

I guess I would maybe think about a project that's a little bit bigger than what Gil said under a rubric of something like what is aging and death with dignity in the 21st century, develop countries.  I don't know if we want to take on developing as well, but I think that's a huge ethical challenge.  I don't know about you all, but I was sitting here all day thinking about myself, my family.  It's something that most people are going to cope with.  I, as a member of the Narcissistic Baby Boom Generation, think we're all going to think it's extremely important and people are really going to be grappling with this.

There isn't a lot of buy-in to the traditional spiritual institutions that guide us through these things and I think this will be a social crisis as well as a kind of an existential crisis over the next 15, 20 years how to deal with these things.  So I would really hope that we could take this up.

PROF. SANDEL:  Could I ask Rebecca.  What is the 'this'? You raised actually a more interesting topic to my mind than autonomy.  Death.  Death is an interesting topic.  Autonomy by now has been so chewed over.  Autonomy is dull.  Death is interesting.  So when you say, 'Yes, I agree we should do this.'  What's the 'this'?  You started out saying I agree, but then you gave a very different thing.  So what's the 'this' exactly?

PROF. DRESSER:  This is death with dignity, if we want to call it that.  Thinking about it from a broader perspective acknowledging that autonomy is not going to give us the answers and how we do approach it with a better way of thinking.  I'm not sure what it is, but I would love to hear what people like you think about it.  So I guess I would say in terms of thinking about our futures as aging people, as people who will need a lot of healthcare, as people who will have relatives who need a lot of healthcare, how do we approach this journey? What's, I don't want to say a health way of thinking about it, a rich, moral way of thinking about it?

DR. FOSTER:  Well, let me just say, so you want us to go back to ancient questions of what does it mean to die that everybody from the prophets of Israel to every seminary to everybody else has addressed over and over.  So we're going to come together as a council and we're going to say how you die.  What is your hope for death and whatever?  That's going to become a subject.  I mean I don't follow you.  I really don't follow you as to what you think we were going to do here.  Now I'm pressing pretty hard, but I think like Michael.  You'd better be specific.  Are we going to say 'Well, what do the polytheists think about death?  What are we going to do?  I mean what do you mean by death by dignity.  I just want to push you to that.

CHAIRMAN KASS:  Gil, do you want a tiny comment while Rebecca thinks about that?

PROF. MEILAENDER:  Yes, just a sentence.  I just want to reemphasize that my notion was not that we should take up the concept of autonomy.  My notion was that we should say that what has become our public language turns out to be bad public language and we should think about different public language.  That seems to me to be a rather useful interesting thing to do.

DR. KRAUTHAMMER:  I think autonomy is one way to answer the question and the question is who decides.  As people lose their capacity to make decisions, who decides and how do you establish structures that do that with regularity and with justice?  I think that's an interesting question.  There are a lot of people who— And it comes up in several contexts.  Autonomy is one of the ways of approaching it.  I think Gil tends to be skeptical about it.  I may be more of a libertarian but those are different answers, but the question I think is interesting and I don't think it has a very good practical answer today and we might look at it.

CHAIRMAN KASS:  Well, we're going to have to stop.  Let me say one sentence or two.  I share the view that the Council's work together has to be on something sufficiently focused, sufficiently clear and sufficiently deserving of your energies and time to bring you together here to make it worthwhile.  There is no argument about that.

The last time we started on more specific topics, at least the question of advanced directives was on a particular topic whether this is indeed the way to enable people contemplating their future to this is the best way to set up the care for the people who are aging and dying to allow them to somehow govern this with a piece of paper written 20, 30 years in advance.  Jim Wilson who couldn't be here actually set himself the task of reading all of the literature on advanced directives and he said he thought it was largely bankrupt.  He really didn't think that that was somehow going to be adequate to the task that we had.  Durable power of attorney was somehow better but that he was really at work on this topic.  And I do think that we will work to try to organize and focus some kind of question that is a question that is researchable and is manageable for us.  If we can't, we won't do this.

Having said that, I do want to put in one kind of a plea for the larger view of this, not that we were going to have a staff written report of the sort that we had before.  But I fear that as this conversation proceeds with an aging population and with a increasingly demented population that this will be handled in one or another of the usual bureaucratic ways.  That there will either be simply a economic and demographic approach to this matter or there will be simply another kind of biologized view of what you have to do to somehow move in there and alleviate these symptoms.

Whereas I think Tom Cole gave us in a way what he took to be the most important question of this particular age where there is no longer a circle and there's no longer even a view of a sequential and graded scale of what actually does it mean to be old and to be infirm.  Now that's not a question of burning public policy, but if we were to pull commission papers, commission papers drawing on things that people know, there is at least a way that a richer bioethical approach to those questions could be  put between two covers so that insofar as that conversation proceeds using the things that the experts already know, we might have not only lifted the matters to view, but given it a certain kind of richer, deeper and more humanistic shape so that it simply doesn't become yet one more problem for managers or deniers of one sort or another.

Now that would not be writing a report that's already been done.  It would be a matter, if we go forward with such a thing, of thinking through what are the specific large questions of present policy or present thought that deserve a voice in this discussion.  But that would be not a substitute for finding a focused question for us to tackle here.  I do think that it's incumbent upon the Staff and myself with your help to try to formulate such a question or else go somewhere else.

The reason we had the conversation we had today was to give us a kind of larger background for seeing where the particular pieces might fit.  We started rather small last time.  We've now painted a larger picture and I think we take for ourselves the task.  Bill will be one of our major consultants and in trying to think this through we will consult with you over the weeks ahead and try to formulate something.

We go now to the museum.  Someone will show us the 14th Street exit for those of us who would like to walk.  Dinner is at 7:00 p.m. at 1201 Pennsylvania Avenue for those who are not going to the museum.  We will be here if people would like to leave their things at their places.  And tomorrow morning for those of you not joining us, we start at 8:30 a.m.  Off the record.

(Whereupon, at 4:31 p.m., the meeting of the Council on Bioethics was concluded.)


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