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

• Session 1: Aging and Society: Social-Scientific and Humanistic Perspectives
  
• Session 2: Aging, Dementia, and the Person: Clinical, Neurological, and Existential Perspectives on Alzheimer/Dementia
  
• Session 3: Aging, Dementia, and the Care-Giver: Family and Institutions
  
• Session 4: Aging, Dementia, and Society

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