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.,
American Enterprise Institute
Benjamin S. Carson,
Johns Hopkins Medical Institutions
Rebecca S. Dresser,
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.
P. George, D.Phil., J.D.
Ann Glendon, J.D., L.LM.
William B. Hurlbut,
Peter A. Lawler, Ph.D.
Johns Hopkins University School of Medicine
Gilbert C. Meilaender,
Janet D. Rowley, M.D.,
The University of Chicago
Michael J. Sandel,
Diana J. Schaub, Ph.D.
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
I'd like to recognize the presence of Dean Clancy, the
designated Federal officer, in whose presence this is a legitimate and
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.
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.
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
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
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
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
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
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
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
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
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,
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
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
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
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
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.
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
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
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 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
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
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
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
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
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.
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.
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
PROF. COLE: Thank you. That's a good
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,
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
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
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
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
CHAIRMAN KASS: Thomas, do you want to
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
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
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
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
SESSION 2: AGING, DEMENTIA, AND THE
PERSON: CLINICAL, NEUROLOGICAL, AND EXISTENTIAL PERSPECTIVES ON
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
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
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.
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
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
Now the defining characteristics of the disease as we move
into the biology now and into the pathology, are the following:
The amyloid plaques and neurofibullary tangles that Alzheimer
first described, an inflation in the brain represented at
the level by microglia activation and reactive astrocytes
in the brain. Of course, a selected neuronal degeneration.
But beyond the lost of neurons, per se, there's this synaptic
loss that my cartoon attempted to illustrate. And the synaptic
loss must explain the multiple neurotransmitter deficits that
I won't read off for you, but only one of which, acetylcholine
is addressed by an FDA approved treatment at present. There
is actually a second FDA approved treatment that many of you
know, which I'll mention in a moment, a glutamate antagonist
called memantine. But ironically, it doesn't actually
address the point on this slide which are the deficits in
glutamate that occur in the disease.
And the same time that there are deficits, there appear to
be some inappropriate release of excess glutamate as a potential toxin,
and therefore memantine would block that. But memantine does nothing
about the fact that before that the patient has lost glutamaturgic
This is a patient whom I followed during life. A 69-year-old gentleman
when he died. He was a stockbroker, he developed the disease at
age 60 with a positive family history. In the amygdala of the brain,
very important for behavioral control, there were these spherical
deposits of amyloid beta protein, so called amyloid plaques. And
the plaque on the left is ringed by dystrophic axons and dendrites,
so it would be called a neuritic plaque. On the right there are
also dystrophic dendrites quite bulbous and enlarged, but they're
not quite symmetrically arranged as they are on the left. So these
are two examples of these so-called amyloid or neuritic plaques.
Adjacent are these neurofibrillary tangles which are silver
positive massive of filaments. And you notice in the lower
right hand corner of this section there are cells that are
cytologically normal. Even though my patient had 9 years
of clinical disease and very likely had maybe 18 or 27 years
of disease in toto. So even at the end of life some cells
are spared. And we do not understand why this selective vulnerability.
But the same could be said for Huntington's Disease, amyotrophic
lateral sclerosis, etcetera.
Here's stepping back from the microscope and looking at
a lower power view. There are just enormous numbers of these amyloid
plaques and neurofibrillary tangles. The two that you saw in the last
view are somewhere in here. I'm not sure which two they are. But as
we step back you see more and more of these. And they really focus on
the areas you'd expect them to, that is important areas for memory
Another image, one that has therapeutic implications is
that in the amyloid plaque, and it's shown in the brown
amyloid staining here, the active angry looking cells I would
call them in the foreground are microglial cells. The macrophage
monocyte-derived cells in the brain that produce cytokines,
etcetera. And in this imagine there is a ring of reactive
astrocytes, almost appearing to wall of the plaque. This
is inflammation, at least a brain style of inflammation. And
it suggests the possibility that folks who take things like
Motrin, Advil, ibuprofen and things like that. So it may have
a lower likelihood of developing Alzheimer's Disease for
this very reason, although we don't know that for sure.
So what I'm telling you is that epidemiologically there
is evidence that certain NSAIDS (Non-steroidal anti-inflammatory
drugs) taken over the counter nowadays might retard the likelihood
of developing Alzheimer's Disease. We don't know
if it's because they help the process you're seeing
on the screen.
Now, a few statistics. I'm a biologist, I think, and a neurologist,
but I can't fail to mention that in 1997 the prevalence was
estimated at 2.32 million in the United States. In this particular
publication the range was large, 68 percent of the patients were
estimated to be women, 32 percent estimated to be men. I can't
give you a precise answer about exactly why that is, why the gender
disparity but I have some thoughts about it if we have time later
At age 75 it is said, and these are very precise numbers
based on a pretty good study in my opinion, 4.3 percent of folks in the
United States have the condition we call Alzheimer's Disease. At
age 80 that rises to 8.5 percent, 85 16 percent, age 90 28.5 percent
have the diagnoses that experts call Alzheimer's Disease. Not
dementia or not any of the other disorders that we're speaking of.
Incidence, 360,000 new cases per year. The range is very
broad. By 2050 this figure may rise threefold to 1.14 million
per cases per year in the U.S. alone. By 2050 the prevalence
may rise 3.7 fold to 8.64 million from the current prevalence
that I mentioned above of 2.32 million. But the range is enormous
again. Very hard to estimate. All of this, of course, predicated
on no meaningful treatment beyond what we can prescribe today.
An intervention that delays mean age of onset by five
years, which has been likened by the risk calculators to about a 50
percent risk reduction, would reduce expected prevalence by 1.2 million
after just ten years if that intervention was on hand, and reduce it by
4 million after 50 years; that is by 2050.
And one that delays onset by two years or so, it slows the
course of the disease and makes it a little bit later, that would
reduce expected prevalence by 600,000 in the United States after 10
years, 2 million after 50 years.
These are some curves that show the striking rise in
prevalence of mild, moderate to severe and total Alzheimer's
Disease by one set of data.
Public costs are enormous. 2010 Medicare costs, you know
these numbers perhaps, they rise 54 percent from the current figure of
31.9 billion in 2000 to 49.3 billion. These are Medicare costs.
In Medicaid expenditures, primarily for residential care of
dementia. In fact, this figure is exclusively for residential care of
dementia in patients who otherwise do not have physical support for
this, may rise 80 percent to 33 billion.
At present the public sector, from what I read, is
estimated to finance a small portion of Alzheimer's Disease care,
13 percent for community outpatient care and 34 percent for
And then the remainder is the cost putatively to employers
or to the private sector. U.S. businesses are said to bear costs in
these ranges. So for example, business costs for workers or caregivers
of people with Alzheimer's putatively costs employers 26 billion
going to 36 billion in 2002 according to these earlier data. Business
costs for health care and health care research for people with
Alzheimer's Disease borne by employers, maybe up to 24 billion.
The total business costs 61 billion.
These numbers then add to the governmental costs to give a
figure upwards of 100 billion annually.
And the last statistic I'll bore you with or share with
you is this set of graphs comparing the prevalence of mild disease,
which is in the darker symbols, and moderate plus severe disease
grouped together in the lighter symbols if no treatment becomes
available over the next five decades. So these are the kinds of
prevalence numbers going up to 10 billion or maybe 15 billion if
nothing intervenes. The second set of bar graphs is if you had
therapeutic that delays onset of the disease by maybe 6 or 7 years.
Then you'd still have the same spread of mild versus moderate to
severe, but the total numbers would be done.
This third set of graphs is if you had a treatment that
delayed disease progression. Onset occurred still in the 60s and 70s
but it didn't go as quickly. So you had more mild cases as compared
to the total. But the total cases would ultimately accrue to similar
levels. And this is the case that I think will actually occur. And the
rosiest scenario that you have both delay disease onset and a slower
progression so that both mild cases occupy more of the total population
and the total numbers are lower.
So let's return to the biology. Current medications I
was asked to speak of briefly. Symptomatic drugs are the acetylcholine
inhibitors. You see there are brand names here, which is how the
public generally speaks of them. The new glutamate antagonist, just
one of these approved by the FDA in January or it came on the market in
January, Namenda or memantine. Behavior modifiers of course,
anti-psychoticsm tranquilizers, anti-depressant and a variety of other
agents that potentially help with the very difficult behavioral
symptoms that my families tell me are the most difficult part of this
far beyond the memory impairment.
Potentially disease swelling agents that are currently available
include antioxidants. Most of my patients take vitamin E,
1000 or 2000 units a day. Perhaps anti-inflammatories either
because they reduce the inflammatory cells in the brain or
perhaps because they actually interfere with the amyloid problem
that I'm going to explain to you in a moment. And maybe
cholesterol lowering drugs have some beneficial effect. But
we're not ready actually to say this in a more public
forum than this one, that is I can't write that anti-inflammatories
and cholesterol lowering drugs should be taken by patients
in America universally because they have plenty of bad side
effects. And I don't know for sure that they slow Alzheimer's
Disease. Sometimes I use them anecdotally in patients whom
I think I can follow very closely.
I think this is pretty much it. This slide summarizes the
principle therapies we have available.
So let's talk about the biology. The diagnostic
regions of the disease are those that Alzheimer described. So this is
sort of an operational definition of Alzheimer's Disease. The
condition contains neurofibrillary tangles inside neurons that are
composed of altered forms of a particular protein called tau. Whereas
the amyloid plaques, which are really outside cells and between the
cells are composed of 40 and 42 amino acid long amyloid beta-protein,
so named by George Plenner who I think will be viewed ultimately as a
sage in this field. Sadly he died of another amyloid disease of the
heart some time after he discovered the amyloid beta protein in 1984.
Now Alzheimer's Disease is one of a family of diseases potentially,
and this isn't a terribly exciting slide for people like
myself who study regeneration, it may mean less to this audience.
But the point is it looks like diseases like Parkinson's
Disease, ALS, Creutzfeld-Jacob Disease and Huntington's
disease have a common thread with Alzheimer's in that
there is a misfolding of a normally well folded protein and
it aggregates in lesions in neurons. And without going into
further detail, the details are not really critical here,
it looks like things we learn about how amyloid beta protein
or tua protein misfolds in Alzheimer's may help us with
understanding Parkinson's and ALS.
Now this image is a bit of shocker. This is a section of
frontal cortex from a patient. And the bottom of the slide, which is
devoid of these brown lesions is the white matter of the brain.
Everything above where my cursor is now is the gray matter of the
brain. In simple terms thinking area of the brain. And these are a
zillion amyloid plaques.
This patient was 12 when he died. So this is remarkable.
It is only one human condition which leads that leads to such an
profound Alzheimer's like picture, and I think a number of you know
what it is, it is Down's Syndrome. So it turns out that this has
been in an enormously powerful clue to biologists that being born with
an extra copy of chromosome number 21, and having three copies instead
of two, brings not only the Down's Syndrome, but brings an almost
invariant occurrence of Alzheimer's Disease, but already as early
at the microscopic level as age 12.
This patient had he lived longer, if he had died from
cardiac reasons unrelated to this pathology, would likely have
experienced some fall back in his learning ability. Although he was
retarded from birth, he would have certainly been able to learn things.
But at 20, 25 I suspect he would have not been able to get on the bus
and go to a sheltered workshop and do what he wanted to do as well as
he did when he was 15.
Now, what is this telling us? It's telling us that the
beta-amyloid precursor protein which gene is encoded on chromosome 21
almost certainly will turn out to be central to the pathogenesis of the
condition we call Alzheimer's. So I don't want to overwhelm
you with a lot of biological gobbledegook but I will tell you that this
molecule is the favored therapeutic target of biopharamaceutical
companies worldwide right now. I hope they don't have it wrong. I
don't think they do personally. If they are wrong, then I am big
trouble for sure. But it appears that understanding how this molecule
is handled by brain cells might lead us to treatments and ultimate
Why? Because the amyloid beta-peptide is a small fragment
embedded within a 770 amino-acid precursor protein. It's
a receptor like molecule, like the insulin receptor. This
is inside a cytoplasmic tail. This part waves in the breeze
and it sticks on the outside of the cell. There's a single
transmembrane domain. And in 1992 my lab discovered that
there is a processing situation that goes on normally in all
of us throughout life. Beta-secretase cuts right at the beginning
of the red box here, and that's followed by a enzyme called
gamma-secretase in the middle of the transmembrane domain
curiously popping out the amyloid beta-peptide.
It is just this peptide, this little red box, that makes
up the myriad plaques in the patient's brain. The rest
of the protein is dispensed with, for whatever reason. Of
course this protein has a normal function, and I'm not
going to speak about that today. It appears that its involvement
in Alzheimer's Disease does not relate to its normal function,
but relates to a so-called toxic gain of function when these
enzymes make too much A-beta or something else goes wrong.
So I'll ask you to try to recall that beta-secretase
and gamma-secretase are two naturally occurring enzymes in
everyone's brain that dice up the amyloid precursor protein to
release amyloid-beta. And that happens in in-utero and beyond.
So this has given rise to hypothesis that Alzheimer's
is a syndrome caused from a chronic imbalance between A-beta
production and A-beta clearance that leads to cerebral accumulation
of A-beta, and particularly a 42 amino-acid form of A-beta
called A-beta 42. The imbalance we thought could be caused
by numerous distinct genetic alternations and perhaps by environmental
ones. But if you ask me what you can do to protect yourself
environmentally, there's nothing I can recommend with
Head trauma is a known environmental risk factor. So
I'll ask you not to go to go out and beat yourself on the head. But
beyond that I can't tell you about a dietary factor or sun
exposure. I can only tell you to choose your parents carefully. Beyond
that, we really don't know much about environmental alterations.
Now this syndrome has been enormously controversial and
it's made it to The Wall Street Journal recently
where it's been said that those, like myself, who tout
this hypothesis are squelching other areas of research. So
we can debate that later on. I'm not going to digress
to talk about that, but Richard Hodes the Director of the
NIA I think subsequently wrote an article to The Wall Street
Journal saying that he has evidence that a large amount
of taxpayers' dollars were spent on other theories besides
So, as Schhopenhauer said, all truth passes through three
stages. First it is ridiculed. Second it is violently opposed.
Third it is accepted as being self-evident. We're not
yet there with the amyloid hypothesis, but I'm beginning
to feel a sense that perhaps this is now being accepted as
oh, yes, well that's sort of obvious that this build up
would be bad news for memory function.
The basis for saying that is based on this concept. Studying
rare forms of the disease, familial Alzheimer's, and understanding
the genotype to phenotype relationships and in very brief
summary, there are four chromosomes, four genes that the field
agrees are predictive of getting Alzheimer's. Three of
these, the first, the third and the fourth are inherited as
very aggressive dominant traits. If you're born with
one of these mutations, it's almost definite that you
will develop Alzheimer's, and you will do in your 40s
The second trait listed here is a so-called polymorphism.
That is, Apolipoprotein E comes in three variants in the human
population, E-2, E-3, E-4 and Allen Roses at Duke University
discovered with this colleagues in 1992 that inheriting Apolipo
E-4 with one allele from mom, for example, or dad gives you
a two to fivefold increased likelihood of Alzheimer's.
If you inherit allele from both mom and dad you have a five
to 15 fold greater likelihood of Alzheimer's than you
do not have the E-4 allele in your genome.
So this became to my knowledge one of the very first examples
of a natural polymorphism in our population, in the human
population, that you could test for genetically. But I think
everyone in the field recommends against testing for this
until we have a treatment. That way we could couple it with
the message you have an E-4 allele.
Now, a different example is presenilin, which has been
enormously instructive and there are mutations in presenilin, now 146
of them. You see a few of them scattered in this diagram of
presenilin, which winds its way in and out of a membrane eight times.
This mutation here, this cartoon mutation, represents a
mutation that causes the most aggressive form of Alzheimer's known
in the literature. A young woman developed this at age 18 and died at
age 33. So that is absolutely remarkable.
So mutations in this gene are extremely malignant in terms
of causing Alzheimer's. How do they do it? My lab and
several others have we think figured this out. If you look
closely at the sequence, amino-acid sequence of the presenilin
molecule which winds its way in and out of the membrane eight
times, and you enlarge this part of the molecule, there are
two Ds, the single letter code for apartates in the middle
of the sixth and seventh transmembrane domain. What does
this mean? We did a bunch of experiments and so did others
to suggest that these two Ds that are circled in red are crucial
for presenilin when mutant to cause Alzheimer's Disease.
And the way they do that is shown here. The 2 Ds or aspartates
coordinate with APP. And they actually represent the cutting
machine that cuts APP to release amyloid beta peptide. This
is the so-called gamma-secretase reaction, the second of the
two cuts that I mentioned.
In a nutshell then, presenilin appears to be the long
Now, there's a very interesting biological problem with addressing
gamma-secretase. And that is that as Gary Sturhl and Iva
Greenwald showed, if a presenilin molecule on the fly is knocked
out or dysfunctional, the fly gets a very abnormal wing, the
so-called notched wing. And nerve cells and the nervous system
of the fly are disordered.
Now what's going on here is that presenilin is not only
a bad guy leading to the most aggressive form of Alzheimer's, but
presenilin is necessary for life. It's necessary for the
development of the fly to have wild type wing rather than a notched
In summary, presenilin shown in purple here uses its two
intramembrane aspartates by the letter D to cleave a protein called
notch. Its name was given to it by a biologist many years ago because
absence of notch function leads to a notched wing. And so presenilin
is necessary for notch to be cut in the membrane of the cell. This
part is released and does good things inside the cell, in the nucleus.
This is necessary for life in all multicellular animals on the planet.
And therefore this mechanism was conserved during evolution.
Unfortunately, an alternate substrate called amyloid precursor protein
gets processed essentially identically to notch. This doesn't seem
to make much difference when many individuals or almost everyone died
shortly after reproductive life. And only when this cleavage, which
does occur throughout life and pops out the blue box here, the amyloid
beta, when that accumulates over a lifetime, there is a risk of
developing memory failure.
So from my perspective biologically I feel you're
looking at why it is that Alzheimer's arose in the human
population. Now we'll see if this turns out to be true. Only
therapy with anti-amyloid drugs can prove this hypothesis. But I think
that you need this machinery for life, for sulfate determination in
metazoans and a byproduct of it is that you also generate amyloid beta
peptide throughout life, which didn't make much difference when
most of us died in our 40s and 50s.
Now I won't go into further scientific detail. If you
produce A(Beta) at 1.2X compared to 1.0Xp normal and you degraded at
1.0X, you're going to accumulate it over life and it's going to
aggregate, which is what it did in that Down's patient already at
age 12 years.
We recently figured out what that aggregation does to brain
cells, to memory cells. We studied the aggregation of A(Beta) is a
simple culture system. The black lines here represent the actual
A(Beta) peptide, A(Beta) 42. This is the main beta, but if you have a
presenilin mutation in the cell, you make doublets and triplets and
quadruplets of A(Beta). It starts to gum together.
We've taken advantage of this phenomenon in a simple
cell and harvested the medium of these cells and injected
them into rats. What happens is that the rats have trouble
in a task we taught them. We've taught the rats to press
lever A two times, go to lever B and press it six times, return
to lever A and press it ten times, go to lever B and press
it 16 times according to the quadratic function X square minus
X. So these rats do algebra. And if you give them a microinjection
of the lateral-ventricle of the brain of this doublet/triplet
rich form of A(Beta) from our cultured cells, they do what
you see in the dark symbols. They make switching errors.
They switch to lever B too soon or they perseverate. They
remain on lever A not too counts, but three counts or they
remain there for 16 counts. They go all the way up, by the
way, to whatever the number is, 56 I think it is, and then
they do down by themselves down to two again. They learn
how to do that. So this is a very sophisticated tests designed
by Jim Cleary and Karen Hsiao Ashe, my collaborators at the
University of Minnesota.
If you give them the singlet of A(Beta), the monomer, there
is no significant effect on switching or perserveration errors.
Why do I tell you this? Because I think it's evidence
that this little peptide when it mounts up in doublets and triplets is
trouble. And this interferes with the memory of a learned behavior in
the hippocampus of a rat. Whether this does this in a human we simply
So let me summarize and tell you where we are therapeutically.
This cartoon illustrates one way of thinking about the Alzheimer's
riddle. That cells in the brain make the amyloid-beta peptide,
which is simply diagrammed as little sheres here. Blood cells
make it. Big neurons on the left make it. And by the time
that someone who is destined to get Alzheimer's Disease
at 75 is 55, we suspect and there's evidence for this
that there are these diffused plaques, cloud like amyloid-beta
peptide clusters. And an axon that happens to be passing
in the vicinity here, and there are many axons of course in
this vicinity at all times, is okay. This is not just hallucination,
but Brad Hyman at the Mass General Hospital is showing this
kind of phenomonology by beautiful microscopic studies. But
if you fast forward 20 years the image looks like this. And
again it's supported by electron and microscopic data.
The plaque is more robust or larger, the amyloid-beta has
aggregated into chain like structures, doublets, quadruplets,
etcetera, that are probably trouble. The microglial cells,
which are inflammatory cells, move into the fray and an axon
is now inflamed or damaged at this point. It probably can't
conduct information very well. This is the synapse here that
I cartooned in my first slide.
I want you to know that Bill Klunk at the University of
Pittsburgh has been, I think, the first to publish the most striking
images of actually seeing the amyloid in the brain of a living
patient. So here a control 75 year old woman, and here a woman with AD
at the same age or similar age. The red and yellow signal represents
Klunk's ability to use Pittsburgh Compound-B to actually image her
amyloid deposits in the brain. You can't see them plaque by
plaque, but you can see this total signal. And the signal to noise
ratio is better with his compound than the current best positron
emitting dye that we use, fluorodeoxyglucose, which has been used for
more than a decade.
So I'm very excited about his work in this regard. I
have nothing to do with this research. And I think ultimately many of
us will want to get an amyloid scan once this is fully validated and,
of course, approved for general use.
So let me end by telling you where we stand on the
treatment modalities, that is treatments beyond those I listed earlier,
which were symptomatic. These we hope will ultimately be disease
We would like to inhibit the A(Beta) generating enzymes,
the beta and gamma-secretase. And many pharmaceutical companies
are working hard on those targets. A gamma-secretase inhibitor
has been tried by Eli Lilly Company in human trials and the
results were announced in April. There were no spectacular
results. It was simply a short trial showing that amyloid
protein levels fell in the blood, but they happen not to fall
in the spinal fluid in that study. So they need to go back
and figure out why that was. My guess is because the drug
didn't penetrate the brain sufficiently. That's the
only gamma-secretase trial in humans so far that's been
discussed. I think actually both of these are good targets
on theoretical grounds, and we'll see whether they can
actually reduce amyloid and make a difference in the clinic.
This is the approach that has caught the attention of many
people. It is the idea of actually vaccinating against
Alzheimer's. You give the amyloid-beta peptide by a shot a deltoid
muscle. The patient makes antibodies and the antibodies circulate
throughout the blood stream and some of them get into the brain. And
I'll show you an image of that.
You could also inhibit the inflammatory process and
interfere with the toxic response of neurons, but that may be too
little too late.
So the amyloid vaccine, a work that I had nothing directly
to do with, was pioneered by a fellow called Dale Shenk, and saline
injection into mice that develop Alzheimer plaques. Over six months
that saline injection did nothing to prevent the amyloid build up. But
injecting the amyloid-beta peptide, the molecule that I am today
claiming is a principle bad guy in Alzheimer's, led to a dramatic
clearing of these deposits in a mouse. Many further studies were done,
including with monkeys, and this entered human clinical trials.
There is good and bad news. The good news shown here was
that a patient who died for another reason, from a pulmonary embolus,
had skipped areas in her brain where there the wall of amyloid plaques
suddenly was interrupted. And in another area of the brain, the only
thing that was left were little microglial cells engulfing amyloid. A
very similar picture that was seen in the mouse model.
So it looked like amyloid was being cleared. There are
now five patients who have succumbed from natural causes post
an amyloid vaccine trial. And in each case, there have been
these areas where there is less amyloid in the brain.
And the last slide is does this matter however clinically?
This is a small subset of 30 subjects in particular published by
colleagues from Zurich, Switzerland of a larger trial of 375 subjects.
The full data have not yet been released, but they're apparently
going to be released on July 22nd in Philadelphia. But the data
that's publicly known is that in these 30 subjects in this amyloid
vaccine trial, if you develop no antibody, no rise in antibody levels
in your blood, your mental status examine fell over the subsequent six
months. If you developed an intermediate increase in antibodies, you
didn't as much of as a fall. If you a strong antibody titer there
was essential no change in this commonly used test, MNSE where we ask,
for example, to tell us your place of birth, your date of birth and to
And the accrual of cases of moderate to severe
Alzheimer's Disease or patients remaining with mild disease
didn't fall as much in the dark symbols than the patients who had
strong antibody responses.
So, this is a complex riddle. I've given it perhaps
more detail than you cared to hear, but an overview of the biology and
clinical aspects of the disease.
We don't yet know where the leading hypothesis will
turn out to bear fruit, but we do know that it's in clinical trials
and patients have been enrolled. So probably this group should know in
three years or two years whether this has merit or not.
Let me stop there and just hope that there's time,
perhaps after David speaks, if there's any questions.
CHAIRMAN KASS: Thank you.
DR. FOSTER: Leon, could I just ask one technical
You didn't mention the possible target of the
alpha-secretase here which will clip through the beta peptide there,
did you, or maybe I missed it when it—
DR. SELKOE: Right, I did not.
DR. FOSTER: And I think there are sort of two advantages.
I mean, I've tried to follow your work. Not only would you then
stop the production of the amyloid-beta peptide there, but that maybe
the soluble remainder of the precursor protein supposedly has
anti-protective effects that are not released when you use the beta
gamma-secretase. So I just wondered if you'd given up on the idea
enhancement of the activity of the alpha-secretase, this—it's
another peculiar enzyme. It's called an atom enzyme. Could you
just comment very briefly about that, because I thought that maybe you
would focus on that more than you did about the immunization here.
DR. SELKOE: You're absolutely right. That is a very
valid target and I didn't focus on it primarily in the interest of
time because I felt I had said it and said enough.
The alpha-secretase target has recently been validated in mice
by over expressing alpha-secretase, atom 10 in particular,
one of the atoms. And showing that you reduce the amount of
plaques in the mouse's brain. Just like inhibiting beta-secretase
and inhibiting gamma-secretase have also been shown to reduce
plaques. So your point is absolutely correct.
The reason I haven't focused on that as much is because
alpha-secretase activators are not as much in the forefront in the
biopharamacutical industry and they're, after all, the ones who are
going to do the chemical trials and deliver the therapeutics.
There are ways to do this in the lab, but chronically stimulating
alpha-secretase to both cleave A(Beta) in the middle to prevent
its production and to provide a protective effect, we wonder
whether that will be readily achievable pharmaceutically and
whether that will also have side effects to chronically stimulate
alpha-secretase. But I think there're ways of doing that,
and I like that way of going about it. And there's a
very nice paper just out, The Journal of Clinical Investigation
that suggests it's conceptually possible.
CHAIRMAN KASS: Thank you very much.
David Shenk, good to have you with us. We look forward to
MR. SHENK: Thank you.
This is a little awkward for me because Dr. Selkoe has just said
what I was pretty much going to say. A terrible overlap here.
No, I'm going to switch gears quite a bit.
Thank you. It's such a honor to be here. I
particularly want to thank Dr. Kass for his kindness in our
conversations leading up to this conference. And if my book has shed
an ounce of light on the issues at hand for the people at this table,
it is indeed a high honor and I would say a lifetime of satisfaction
for a writer. And I'll do what I can to contribute to today's
Let me first put my expertise and training in context for
you. I have no expertise; I'm not an expert and I have
no training. I'm not a medical doctor, although I have
been accused many times of having the handwriting skills of
a doctor. I am not a molecular biologist or a geneticist.
I can assure you that I did go to college; that's about
it as far as training, high education.
It is the conceit of my work as a writer, as a generalist,
that perhaps outsiders can also bring something to these highly complex
discussions. And sometimes maybe even add a little something that the
insiders are a little too inside to notice.
I was dragged into this subject not by any family
experience, but by a conversation I overheard about six years ago now
over lunch. And I don't want to spend too much time on it, but it
was concerning a middle-aged couple in their 50s. The man was taking
care of his wife who was in the middle stages of Alzheimer's
Disease I would now recognize. But she had gotten to the point where
she didn't know who he was anymore. And that single fact dragged
me into the subject and has not let me go. It just raised so many
questions and I found in subsequent weeks and months that as I started
to try to answer some of those questions, that many, many new questions
popped up as a result.
And, of course, I do not want to take anything away from
the insiders, the valuable specialists of this world starting with the
amazing army of Alzheimer's researchers and scientists represented
here by the extraordinary Dennis Selkoe.
When I first started this research I realized that there
might be a book here. I thought I would probably learn about
scores of extraordinary scientists who were going to hopefully
come along and rescue us from this disease. And I was so wrong
about that. There are thousands of these people. It's
really an incredible thing to witness the energy that is going
into stopping this disease. And I think Dr. Selkoe has helped
to give us a glimpse of how enormous even slowing it down
would be. But if we were to stop it, just to give you a taste
of this, in the next 50 years we're talking about tens
of millions of lives worldwide who would be spared, and not
billions as you've seen—as you've learned today,
but trillions of dollars.
Now as important as these scientists are, there is another
even larger group of heros to me in this story, and that is the
caregivers. And I'm speaking of the family caregivers and the
professional caregivers, and the people who support that community. And
they will be best represented in this next session, your next session,
by Geri Hall.
I want to deliver what I see as a preamble to Dr. Hall's
remarks at a very general level, not getting into too much
detail. Geri Hall is one of the most knowledgeable people
I know on the details of caregiving and the surrounding legal
concerns. So I'm going to provide an overview, hopefully
in preparation for her remarks. And I'm going to focus
on five central challenges. I did not bring any slides. I
apologize. Five central challenges that I think are highly
relevant to your work as an ethics panel.
Number one, the slow fading away of the patient and the
threats to dignity and self.
Number two, denial and avoidance by patients, family and
Number three, the shifting nature of the disease.
Number four, how Alzheimer's Disease can mask and
therefore complicate other medical problems.
And number five, Alzheimer's Disease is a wedge in
already fractured and dysfunctional families driving them further apart
and complicating care.
So now let me address each one of those concerns in a
little bit of detail. And there's a lot of ground to cover, so
I'll move rather quickly.
First to start with, the most well known characteristic of
Alzheimer's Disease, the fading away. The existential nature of
this disease terrifies patient and family like no other. We're
talking about a condition that essentially erases the thinking part of
the brain very slowly over the course of ten years time, although
we've just learned that the biology of it actually starts quite a
bit before that, leaving a physical shell of a person.
Let me very briefly give you a firsthand feel for what this
is like. Throughout my presentation today I'm going to
occasionally read remarks straight from caregivers that capture
the spirit of this disease better than I ever could. This
first testimonial is from a caregiver living in Washington
"This was the second day of near total confusion for
Ed. He was back pretending to drive the locomotives and imagining that
I was one of the crew. I was asked to call the dispatcher and find out
how to get back to Walla Walla. I drove him around town for two days to
help him get his bearings. When he finally realized he was in Walla
Walla, he was distressed at being so confused and told me he didn't
know what he would do without me. But then half a minute later he was
back in a neighboring town or up in the mountains or who knows where.
Periodically he asked me what Arda was doing and if I heard
from her and telling me what a special person she is to him. I am Arda.
This afternoon we went for a ride and then stopped for a
bite to eat. Our bill was $13.00, which Ed insisted on paying. He
pulled out two 50 dollar bills out of his wallet. I told him I had the
right change, so I took the bill and paid it.
When we pulled up under the carport at home he said
'I'll wait here. What are we stopping here for?' He said
He's at least cheerful and relaxed, much like a little
child waiting to be told what to do. It could be worse."
Well, as many of you no doubt already know, it is often
much, much worse. This is a very gentle dip into this world.
Caregivers are dealing simultaneously with the emotional
pain of watching their spouse or parent fade away, trying to manage the
immense confusion and frustration of the patient and the physical
burden of having to make up for lost functioning 24 hours a day, 7 days
a week. Extreme stress is a guaranteed part of this job and caregiving
itself quite often leads to clinical depression and other stress
related health problems.
One desperate and ultimately unanswerable question that seems
to constantly gnaw at caregivers is this: How much is left
inside that head? What does he or she truly understand right
now? What can he still remember?
It's impossible to ever know for sure and even harder
to keep up with since the disease is always progressing, always getting
Two more aspects of the caregiver experience with respect to fading
away: A sense of deep humiliation which quite often first
bears down on the patient. The shame of fading away, the
shame of not being able to do what they have been able to
do for so long. And then that humiliation paradoxically passes
to the caregiver. The shame of having to take care, the shame
of having to take care of someone who is losing themselves
and, arguably, losing their dignity.
We're talking about a spouse or child who gradually has
to take over their loved one's dressing, bathing and toilet
functions: Essentially having to treat this adult figure as a child.
This is obviously excruciating and exhausting. And coupled with that
is the issue of honesty, or more precisely as I learned in observing
caregivers, talking to them, learning how important it is to not be
honest. After we've spent the first half or two-thirds of our
lives trying to be honest at all moments, now is the time to learn to
not be honest. It's a lesson that every caregiver seems to
experience early on. And to illustrate this, here is a caregiver from
New Hampshire speaking directly to that issue.
"I have really struggled with the honesty issue. One thing
that I have learned is that the best decision for me is not always
the best decision for my mom. At first I decided that she should
know just why we were having her stay with us when she was begging
to go home. But she was in a strong denial and could not reason.
She became extremely angry and the entire family suffered from my
honesty. She suffered most of all.
"What do you say to someone who sits on her bed and says that she
has never stayed out overnight without letting her parents know
where she is? What do you say to someone who thinks she is a teacher
and if she doesn't get home or into her classroom, there will
be a whole class of children left unattended? What do you say to
someone who thinks she has no money to pay bills and will lose everything
she owns if she doesn't get home to a job that you know she
has been retired from for years?
"I couldn't find any reason for telling her over and
over that she has a horrible, terrible degenerating disease that
was making her feel the way she does. I found as the days went
on that she seemed to become less anxious if I tried to just listen
and have empathy with what she was saying and feeling. Sometimes
saying nothing was better than anything I could say. Telling her
that I would take care of some of these things put her a bit more
at ease. It may have felt better for me to verbalize the facts,
but comfort and security is what she really needed, not the truth
about her having this darn disease. The truth won't change things
for her in any way."
I'm going to move onto challenge number two now, denial
and avoidance. And as you can tell, these things overlap
quite a bit. This is just a way to organize my thoughts.
Alzheimer's Disease seems almost to beg those who come into
contact with it to at first ignore it or deny it, or in some other
way sweep it under a rug somewhere. This applies to patients, family
members, friends, neighbors, even family doctors believe it or not.
I should say some family doctors, no disrespect to the
ones here or to the many that truly do "get" this disease.
No one wants to be near this disease if it comes too close
and our first impulse is often to deny. I believe there are
two parts to this phenomenon. The first part is a rational
response to a terrifying truth. Everyone who has ever heard
of Alzheimer's Disease is, rightly, terrified of this.
I got into this business because I was terrified of it. Because
for those who are actually facing a diagnosis, it is overwhelming.
Psychologists will tell you that in certain instances denial
is actually an extremely healthy psychological response.
Aside from the trauma of diagnosis, though, there is a part of
this that goes way beyond the rational fear of Alzheimer's,
and that is the stigma that is unfairly associated with this
disease. Friends and neighbors actively shun people after
their diagnoses. Caregivers will tell you over and over again
how even close friends just vanished from the scene entirely,
immediately and entirely.
Family members are afraid ashamed to use the word Alzheimer's.
To this day, ten years after Ronald Reagan's public announcement
that he had been diagnosed, very few obituaries contain the words
Alzheimer's or dementia. And as a recent illustration of this
Estee Lauder, I don't know how many of you know this, died of
Alzheimer's Disease. She had it for quite some time. She was
very well cared for, obviously. Her family has donated tens of
millions of dollars to fighting this disease and are, obviously,
to be commended for it. But I just find it absolutely fascinating
that when she died, they did apparently everything they could and
successfully so to keep the words Alzheimer's and dementia out
of her obituaries. It's virtually unknown that she had this
I believe that this stigma, this taboo comes from a vast ignorance
about what the disease actually is. Because it's in the
brain and because you can't see it with your own two eyes,
people get the impression that it's a mysterious mental
failing or old people just going loopy. People do not get
that this is a disease, pure and simple. Something is going
wrong with the chemistry and biology in the brain, as we've
just learned so much about. Just like something goes wrong,
although in a different way, just like something goes wrong
in skin cancer or in diabetes or in heart disease. And I
would say we communicators have not done a very good job of
explaining the basics that malignant protein fragments called
plaques and tangles cause the disease by killing neurons and
stopping synapses in certain specific regions of the brain.
It always starts in one region of the brain called the hippocampus
which is responsible for the formation of new memories, which
is what explains the early symptoms of the disease, and the
plaques and tangles always very predictably travel to other
regions of the brain so we can know what's going to happen.
I believe that if people understood the basic outlines of
this disease, we could take back some, not all, of the power that this
disease has over us. And let me just add that this is my personal
mission with regard to this disease. And in my talks around the
country this is how I see my small role as trying to help ordinary
people understand the basics of this disease so we can get past the
Challenge number three, the shifting nature of the disease.
From the caregiver's perspective, Alzheimer's Disease
is not one disease. It is an exhausting ever changing storm.
Consider the trajectory of this illness. You begin with someone
who looks, sounds and feels normal except for the occasional
strange memory lapse. At the end of this disease, let's
say five or ten or 15 years later—it varies quite a bit,
the average is about 10 years—the patient cannot think,
cannot move much and finally cannot swallow or breath. In
between there are a thousand subtractions. Over months and
years the ability to form new memories slowly deteriorates,
the patient's facility with words shows signs of breaking
down, math becomes a problem, tasks and chores become difficult.
So that's the beginning of the disease. So the family
adjusts to this. They maybe get some help, perhaps shift work
schedules around, make some plans. But then the disease marches
Following instructions becomes impossible. Conversations
become difficult. Frustration and tempers rise. Really a whole new set
of symptoms. Again, the family adjusts to the new conditions and the
disease keeps moving.
Older memories start blurring now. Earlier it was just
the ability to form new memories, now it's the connection
with older memories. Serious confusion and paranoia set in.
The patient wakes in the middle of the night and wanders off
down the street, an entirely new problem. Again, the family
adjusts to new challenges which is a paradigm for them.
Some more time passes now. Now the patient cannot get
dressed by herself and is incontinent. Again, the family has to
adjust. A whole new set of physical burdens and emotional ones.
So you get my point. I've run out of words for how
distressing this disease is, but it's worth noting that while any
particular stage of Alzheimer's is devastating in and of itself,
and we would be here having plenty to talk about if it was just any one
of these stages, the way it morphs from one condition into another is a
challenge for even an energetic and well-trained caregiver.
Challenge number four, how Alzheimer's Disease can mask
and therefore complicate other medical problems. And I think we got a
good taste of this this morning with the two presentations.
Let's say some 90 percent or so of Alzheimer's
patients are over the age of 70. And so it is a given that these
people are going to have other serious medical issues to contend with.
That leads to this question: How do you detect, explore, diagnose,
treat and monitor a medical condition in someone who cannot communicate
very well or at all? How can you treat a patient who can still
experience pain and discomfort but can't discuss it and may not
even be able to even vaguely understand what it is they're
feeling? Dementia masks and inevitably complicates every other
potential, emotional or physical distress associated with old age.
To get a small feel for the complexity of this, consider a
relative modest list of medications taken by one Alzheimer's
patient which her caregiver allowed me to reprint in my book. I'm
sure I'll mispronounce some of these medications. Propulsid, 20
milligrams twice a day. K-Dur, 20 meq tab once a day. Synthroid, .025
milligrams once a day. Imdur, 30 milligrams once a day. Procardia XL,
60 milligrams once a day. Prilosec, 20 milligrams once a day.
Aspirin, 325 milligrams once a day. Betagan eyedrops, 2 drops for each
twice a day. Transacon faracon once a day. Paxil, 30 milligrams once a
day. Nerontin, 10 milligrams once a day. Nizoral cream, once a day.
Ditropan, five milligrams once a day. Extra strength Tylenol, one a
As I said, I suspect this list is rather modest compared to
some. Imagine a list twice as long with drugs that might be interfering
with one another or causing a combination of unpleasant side effects.
Imagine all the ailments that go undetected in the first place or are
misdiagnosed and subsequently mistreated thanks to all the confusion
We in the Alzheimer's world are very often quick to
point out the one saving grace of this disease, which is that it causes
no direct pain. And I'm very guilty of this. While that is true,
it arguably I think misses the point. And I'm correcting myself
here. I'm going to try to do better in my talks. It's a simple
fact that Alzheimer's frequently leads to needless pain and
discomfort because of how the disease complicates every other aspect of
Finally, challenge number five. Alzheimer's is a wedge
in already fractured and dysfunctional families. I know no one here
has any kind of dysfunction in their family, so of course we're
speaking of people outside the room.
Alzheimer's brings out the best in people, I should
start by saying that. In my six years in observing this world I have
been continually impressed by the compassion, sacrifice, generosity and
eloquence in the caregiver world. Time and time again people of
ordinary means with very limited resources truly rise to the occasion
and exhibit a level of humanity that they probably didn't even know
they were capable of, and that is no exaggeration.
It also brings out the worst in people. Thieves, con
artists and just slightly less than scrupulous car dealers, and other
sales people, can easily, very easily take an Alzheimer's patient
for their life savings. Unscrupulous or vindictive family members can
do the same, taking advantage of the confusion to divert funds or take
over property. Here is one brief statement to that effect from a
caregiver in Kentucky.
"We've been trying for two weeks to stop my sister
and brother-in-law from stealing and from moving into mom's
house, which they have. I suppose we'll find out Monday
if the legal system moves on her behalf. The bottom line to
all this is that I have mom and she is safe, happy and in
good physical condition. To her this is home and she expresses
her desire to remain with us all the time.
"This whole situation is so sad. I loved my aunts and uncles
and certainly loved my sisters. That's loved in the past tense.
Greed on their part has destroyed my mother's family when she
needed them the most. If it weren't for my children and my
husband, there would be little daily help with mom. When the others
failed to get control of her assets, suddenly no one sent cards,
letters, called or tried to see her."
This sort of violent family implosion is all too frequent.
But that's really not the main point I want to make in
this challenge. That's not what most people experience.
In between the best and the worst if often, frankly, a fairly
ugly middle ground. Extended family members who all mean well
but who don't entirely trust one another or who are perhaps
a little jealous of one another, or who live a thousand or
2,000 miles away and are finding it very hard to believe that
things are really so bad. One sibling living nearby reports
that mom's memory is shot and she needs to be watched
over constantly. Another sibling living four states away
says I just talked to her and she seemed fine.
In the early stages of Alzheimer's, patients can look and
sound fine and appear in every other way normal. They can
also can leave the stove on and burn the house down.
Different siblings have very different interpretations of the
situation. I cannot stress how common this is. If a family
has any underlying issues of resentment or mistrust before
facing this disease, and what family doesn't, Alzheimer's
is perfectly suited to exploit them. Fundamental questions
of home care, medical care and control over financial decisions
can rip even fairly stable families apart.
I'd like to close my remarks today with a portion of an
email I received recently from a daughter of an Alzheimer's patient
who speaks to this issue and also more broadly, to the enormity of what
Alzheimer's does to everyone in its path. This is from Omaha,
"My grandfather was recently diagnosed with
Alzheimer's. He's in the early stages. Last month he had to
close his carpet business, which he had owned for 50 years. They had
an auction, which was very difficult. I tried to convince the whole
family that the point of his life's work was not the things that
people were walking away with for pennies but to raise a family, to own
a home, to see the world; he had all of this and more. The end was
He raised four daughters, three of which have raised their own
families. We all still live very close to each other. My
grandmother is overwhelmed. She chooses not to speak of this
at all. My mother and her sisters are trying to make sense
of it. They're helplessly fumbling for answers, for help,
for a solution. I think they know there is no real solution.
They have told me privately that they expect a big blowup
sometime soon since no one agrees with what the others are
Life is happening, I think. It has been happening and
we've all been growing older but now it is really coming at us full
force. Does that make sense? Thank you."
That's from, as I said, from a daughter of a patient in
Thank you so much for inviting me here today, and I hope to
have an interesting discussion from here.
CHAIRMAN KASS: Thank you both very much.
Let me just open the floor for comments and questions. Dan
DR. FOSTER: I want to just make a couple of points. Leon
asked me as a physician to maybe add a point or two about taking care
of these—I don't do anything like Dennis does, but I have been
involved with academic people who have had early onset. And I wanted
to make just one point about this.
In the course, as we heard earlier, the worst thing is when
people, the patients, know that they have it and before it becomes
irrelevant to them.
I recently had a member of our faculty who was involved with all
of the early space involvement, all the human experiments in space.
And he asked to see me urgently. And when he came in, he sat in
the chair. He has these very blue eyes and looked at me, and just
looked at me. I said so-and-so what is it- I don't understand
what you wanted to see me about. And he said nothing works anymore.
And I saw a single tear drop down his cheek. He said I was diagnosed
fully last week, as far as one can do clinically, with Alzheimer's
Disease, they took away my medical license and said I couldn't
drive anymore. And I came to ask you if I might have one favor from
you. And I said anything that I can do I will do. And he said can
I keep my office. He said I want to try to finish some papers that
go on. And I said of course you can keep your office and your wife
can drive you in.
We had almost everybody from NASA, astronauts and so forth,
came at a symposium for him. And he still comes in every day.
But the point I want to make more specifically in another
case is that through this loss that occurs there is often times a
strong quest to maintain the essence of what the person was. And I
want to tell a story just to end it very quickly with two ways.
Abraham Lincoln says "They tell me I tell many stories, and
I reckon I do, but I've learned that for ordinary people
telling stories is the best way to communicate."
And I want to just give you, because I might not remember
it well, I want to tell you what I said at this person's funeral,
just very briefly. I said now to the core of his essence, he was a
teacher. He thought that the highest calling was not research or
clinical care, but teaching. I never asked him this, but if I had asked
him to define what he was he would answer in one word: A teacher. And
so this is what I said.
There was a prayer about teaching written by Gabrielle
Mistral who won the Nobel Prize for Literature in 1945. She said
"give me simplicity and give me depth. Free from the temptation of
being vain and glorious or commonplace in my teaching. May the
splendor of my enthusiasm be reflected from the bare walls and fill the
And I said so-and-so filled the room with that splendor day
after day, year after year.
A final picture of his essence. He died of an early onset
and rapidly progressive Alzheimer's dementia. It was an awful
thing, it is an awful thing when the cognitive function of the brain
dies and the biologic function remains.
I was Allen's physician from the time the disease first
appeared until Dorothy took him to California for the end
months; that was his wife. And the last year and a half or
two years in Dallas he could not write a check or tell time,
yet he wanted to come to the school everyday just like the
first case. I saw him formally in our ambulatory care center
once a month. There was really nothing I could do. But I periodically,
once a week or so, would come by to his office. To be a teacher
you have to study continually. You have to be a life student
because medicine changes quickly. Often when I came, this
man who could not tell time or write a check had a medical
journal open marking sentences with a yellow pen. He could
not remember a fact he had read, but there was a remnant somewhere
there amongst the beta amyloid plaques and neurofibrillary
tangles for the Alzheimer's lesion that said beneath his
consciousness I am a teacher and I have to study. And that
was his essence. To the end he tried to be what he was.
Both these professors tried to be what they were.
I wasn't going to say this, but—and I don't want
to offend anybody by the specifics, but he and his wife were
estranged. And you said that Alzheimer's brings out the
best of people sometimes. They had lived separately for quite
a long time, never divorced. It brought out the best in her.
She kept him at her home in California and would call me frequently
His wife had a very strong religious faith. She was a
woman who was able to hold the Christian faith. And she was describing
to me how he was defecating and urinating all over the floor and she
would have to clean that up. She hadn't put him in an institution.
And I said well, Dorothy, it seems to me you're operating in a very
Christ-like way, because I knew the details of the estrangement. And
this is what she said to me: "Did Jesus ever scream?"
So it's a story.
CHAIRMAN KASS: Thank you, Dan.
DR. FOSTER: Well, I didn't mean to
interrupt the conversation here. He just asked me—I always
do what Leon tells me. And he said he wanted me to tell a
story. So, to get back to this.
CHAIRMAN KASS: You did splendidly. Really splendidly.
The silence means that it was not going to be easy to follow.
DR. ROWLEY: Well, I feel my sort of mundane and pedestrian
questions are almost inappropriate at this particular point, but maybe
just to carry on. I do want to thank both of the speakers for their
illuminating discussions. And I have three questions for Dr. Selkoe.
One, you pointed out that there are more women than men who have
Alzheimer's. One can think that maybe it's related to estrogen
or some such and recent reports that it may be more common in women
who receive supplemental estrogens post-menopausal might support
that. But I was curious. The second, is why the hippocampus or are
certain regions really preferentially hit or is it universal and
memory is just the one that we noticed, but then we think that's
not so because motor functions continue; why the hippocampus?
And finally, recent reports that suggest there may also be
some relation to lifestyle and the kinds of changes in lifestyle that
are being recommended in terms of more exercise and better diets,
etcetera, whether you think that has any role possibly in prevention or
DR. SELKOE: Well, thank you. Those are very important
The gender difference is simply not well understood. It
clearly is there even if you take into account the greater longevity of
women and all the other factors that we know about. I think that it
may have to do with the more abrupt menopause that women experience
than men and the rapid change in the estrogen levels. I'm not an
endocrinologist, so I can't speak more to that. But I do think that
estrogen balance may well have a contribution.
I also think that there's genetic evidence of something on
the x-chromosome that could play a role, too. And perhaps
having that in two doses has some effect on that. The gene
has not been found, but the x-chromosome is one of five chromosomes
that look like they contain genetic factors that predispose
to this disease. This would not be recessive now, this would
be something that would be dominant that if you had it in
two copies it would be worse than having it in one. So we
don't know exactly why.
And I have to say that in everyday practice there are an
awful lot of men who have this disease, so it's not like—I
thought that statistic that I quoted was surprising to me. I think my
practice is not skewed that much towards women.
PROF. GEORGE: Could you just clarify for us, are we
talking about the sex differential in all the dementias or strictly
DR. SELKOE: No, Alzheimer's Disease. Only
In the case of why selective areas of the brain are vulnerable,
we know a little bit about what might be going on. The amyloid
protein and the tau protein are everywhere. And, indeed, amyloid
plaques even occur in parts of the brain important for movement,
like the caudate and putamen that are so devastated in Huntington's
Disease, they may have a lot of amyloid plaques. Even more than
the hippocampus, per se.
But what's different is that the plaques in the striatum are
early immature lesions. We call them diffuse plaques and they don't
seem to mature even when we look at the brain at the end of life,
the plaques have all stayed immature. That suggests in the hippocampus
there are some maturing factors. And my guess is that in the fullness
of time we'll discover some, in my view of things, pro-aggregating
factors in the hippocampus. It's not just in the hippocampus,
it's certainly in other areas of association cortex, but it's
apparently not as much in the motor cortex where you see the early
plaques, but not the more mature ones. Or the glial cells are different
in these two different regions.
I think at the end of the day there has to be a biological
difference, and I think a good place to start looking is in terms of
pro and anti-aggregating factors for amyloid-beta protein or for the
response elements of the neurons.
And the third point about lifestyle, indeed I tell my
patients that they should try and, most importantly the children of
those patients because they're the ones who most want to know what
to do, that they should try to do all the good things that the world is
teaching them, the biomedical community is teaching them about
exercise, cholesterol, hypertension, etcetera because they can make it
less likely they'll develop vascular dementia. And that means they
won't have a double whammy. They won't have both a tendency to
Alzheimer's, potentially genetic or otherwise, and also have
Whether vascular disease directly causes Alzheimer's
Disease or is a direct risk factor, I personally am agnostic about.
There is some evidence that vascular factors in animal models can
accelerate the process I spoke about, the Alzheimer's in the brain.
But I think most of the impact of exercise, etcetera, is in avoiding
other bad things in your brain rather than avoiding Alzheimer's
Disease. But we'll see.
CHAIRMAN KASS: Let's see, I have Gil
and then Rebecca.
PROF. MEILAENDER: This is partly a comment and partly
a question for Mr. Shenk. Trying to think about the relation of a
couple of things you mentioned in your five points. You said when you
were talking about denial and the stigma that is involved in that, that
that is in fact the thing that you have come to emphasize especially as
you give talks and so forth, that people need to realize that it's
a disease and there's no reason to stigmatize it simply because
it's a disease. And that makes sense to me. I understand that.
I wonder though if in fact there isn't a deeper issue
that relates to your very first category about the fading away and the
humiliation you said we feel about it. I wonder if we should accept
that? Accept the fact, the notion that fading away is, in and of
itself, humiliating? And you know, whether there's a disease base
or not if we didn't think of it as humiliation, if we thought that
a person at every stage of his or her life was to be equally valued, we
might learn to think differently about it. And it seems to me that in
some ways that may actually be more fundamental than even the question
of stigma. And I'd just like to hear what you'd say about it.
MR. SHENK: I don't know what I can add to that. I
think that's an ideal that we should strive for. I think that's
I think as a practical matter this is how people react.
They do live a lifetime being proud of all things that they
can do. And as we get older, we're taught we acquire
more knowledge and hopefully more wisdom and we know that
we have more skills and, yes, we get a little slower and this
and that, but as the gentleman talked about this morning—at least to middle age but I guess now we've kind of pushed
middle age upward so that we think that we just get better
and better. And it is humiliating. I mean, it is just extremely
disturbing to someone that they should start to lose any of
And I think the other thing I would say, which I write
about quite a bit in my book, is that once you start to lose your
memories, your ability to remember recent things and then your ability
to make connections with past memories, you are very much losing a part
of who you are. There's no getting around that. We are, in many
ways, the accumulation of our memories and our reactions to the things
that we've experienced. And I think that we want to strive to not
feel shame and humiliation for all the right reasons, but I'm
afraid that there is just something that does rob you when this disease
comes along. And at a certain point there's no way to get around
I hope I've addressed what you said. I think you said
it more eloquently than I did.
CHAIRMAN KASS: Could I have just the Chairman's
privilege a tiny bit? I was struck by that also, David. You seem
to think that knowledge that this really is just a bad brain disease
would go a long way towards at least moderating some of the humiliation
felt if not by the patient, at least by the caregivers. Gil thinks
that there's another theory, namely some theory of the dignity
of the human person no matter how reduced that could cure people
from humiliation. But it does seem to me, as just a phenomenological
and psychological matter, if one can no longer remember the name
of one's loved one or if one has lost bowel and bladder control,
it's not a question of some kind of modern deformity of thought
or failure to understand the brain that would lead a person to some
kind of profound shame and humiliation.
And I don't think that there's any way that either biology or
theology is going to get us around this brute fact of that experience.
And the attempt I think to think otherwise is I think wishful thinking.
I don't know—
PROF. MEILAENDER: There's no such thing as a brute
experience that's uninterpreted, I think.
CHAIRMAN KASS: I'll let that sit. I shouldn't
have interrupted. Rebecca, please?
PROF. DRESSER: I have a question for each speaker.
Maybe I'll start with Dr. Selkoe.
To some extent I've heard this disease described as
iatrogenic in that it's a byproduct of success in medicine in other
areas so that more people are living longer. And I guess as an aside, I
wonder how much that has to do with the gender differences. It's
just there are more older women around.
But in any event, this is a question I always have with
treatments. If an effective treatment does come along, I
think it's important to think about, you know, that the
impact of that could be positive and negative. So to what
extent would it just give more years of life, some less impaired
but then some more impaired? Because as you point out the
lifespan with people with—I forget if it was all dementia
or just Alzheimer's is shortened. So would this treatment
then remove some of the reasons people die at an earlier age
so that you would then have this longer lifespan, but it would
also include many years of impairment after the treatment
DR. SELKOE: Well, I think it depends on whether the
treatment slows the progression but you eventually develop the full
blown disease anyway, so you have lots of bad symptoms. It's later
on in life maybe at a time you could cope with them even less well than
when you're 75 or 80. If it does that, then it may not be a
blessing or not an unmitigated blessing.
My sense is that, and frankly speaking so much depends on
whether we are getting the biology right. If we're getting the
biology wrong, then we're in trouble and scientists have generally
voted with their test tubes, as I like to say, and they're doing a
lot of experiments around the topic that I discussed and related topics
and many other ones that I haven't talked about. But if we get the
biology wrong, well then we obviously have to start over and figure out
some other way. But if we're getting the biology right there are
other human diseases in which little proteins build up in which the
disease can be cured completely and the patient is free of that
disease. Of course, they're now prone to a lot of other diseases.
So I think that much of the field is attempting to find
therapies that will stop the disease entirely or really prevent it from
happening. And the therapies would be given to people in their 50s and
60s. So I believe, and I've written this myself and many others in
the field have written it, that the brave new world of Alzheimerology
is that we will do risk assessment for this disease in detail in the
50s and 60s if our society can afford it as part of health screening as
we do for vascular disease. And we will take a careful family
history. We will measure amyloid data protein in the blood. You
can't measure tau in the blood, but you can measure both proteins
in the spinal fluid. You could do an imaging scan such as Dr. Bill
Klunk has begun to show us how to do, and others as well. And even you
would now do I believe for geno typing because you would have something
to offer. And you would put the patient almost in a numerical category
of likelihood once you got enough experience with these numbers and
then offer treatment. Either a very early treatment, prevention I
should say, or something that's not as aggressive or robust and
therefore has less side effects.
I think that's where we're going. We're going to
attempt to allow people not to have this disease at all.
And then what will the outcome be? It's quite scary to
think about it, and I'm interested in that question and
think about it a lot, and interested in answers from around
this table, which would be enormously informative.
I think people will develop other diseases and we'll
have other problems of late life. But they, presumably, won't get
the condition that we now call Alzheimer's Disease, and that would
PROF. DRESSER: I think it's an interesting ethical
question if something were just, say, to delay it but then the onset
will occur and then there will be these future years, is that a
worthwhile benefit? I think we would probably jump on it and want it
and then deal with the consequences later.
DR. SELKOE: You know, this is an aphorism that's been
put forward I think in part by the National Institute of Aging. And
it's not one that I warm to, the idea of delay it by five years and
you get five full less, delay it by ten years you get ten full less, or
whatever it is. I don't think that's a compelling model. I
think that we have to think about stopping the disease entirely and not
delaying it. I think delaying it, as you point out, could turn out not
a good idea.
And I don't think that, frankly, the way that we treat
most medical conditions—you know, there's the way that we are
attacking this at its genetic roots, that we would think that our
interventions would delay it. We'd think that either they
don't work at all or they just don't allow the buildup of this
protein at all, or very, very little.
So I hope that we are mostly aiming at full prevention.
PROF. DRESSER: Thanks.
CHAIRMAN KASS: Frank—
PROF. DRESSER: Could I ask my other question? Really
I think that the beautiful thing about your book and the
point that Dan makes is that people with Alzheimer's and dementia
don't lose their subjectivity until later on. And so to some
extent they still remain individuals and a lot has to do with their
earlier history and so forth. And then that material on the man, Morris
Ferdell, was really fascinating in that way.
I think when we're thinking about our ethical
obligations that's a very important element to factor in; what do
we owe to people and in terms of treatment, care, end of life.
And also, and I think you were doing this a little bit,
the danger of blurring the burdens on the caregivers with
the burdens on the patients. And it's not to say that
burdens on caregivers are not something we should worry about
and try to reduce and so forth, but some patients are quite
content when their families are going crazy, you know. And
so we just have to be—it's very easy, I think, to say
oh well, you know I shouldn't do this because she wouldn't
want that when it's really I don't think I would want
that in her position or—there's just a loss of boundaries
there I think.
MR. SHENK: Well, I take that point. Let me rebut that
just a little bit, that last point.
The caregiver has to look after the caregiver first. We're
talking about a ten year prison sentence where they are going
to be spending most of their energy and time and resources
taking care of this person. Obviously, they have an ethical
obligation to do that as best they can. But I would say the
real danger, what I've seen more often than the way you
phrase it, is that the caregiver doesn't take good enough
care of themselves or look after their own interests enough
and end up hurting themselves through stress and other ways,
and then doesn't do their patient any good.
So just to make that—not really to contest what you said.
CHAIRMAN KASS: Frank and then Michael Sandel.
PROF. FUKUYAMA: Well, I'm actually just restating
a question that Rebecca asked, but I didn't quite hear the answer
for Dr. Selkoe.
If you converted the absolute, the numbers you put up for absolute
incidence of the disease and the projections forward into a rate
at different ages, is there any evidence that the rate of incidence
has increased over time or is the increase in the absolute numbers
simply the result of greater longevity.
DR. SELKOE: Right. I don't think there's any
evidence of an increased rate incidence or attack rate. And I think
it's the prevalence that's risen tremendously because of the
successful aging population.
An enormous factor in this is definition. It was called
other things before; hardening of the arteries as we heard earlier this
morning. And so the prevalence of Alzheimer's Disease jumped
dramatically after 1968 when three scientists in England said look
it's not actually hardening arteries, it's this disease that
this guy Alzheimer described.
So I would say that I don't know of evidence that the
incident factor. So in that sense what's the causative agent
here? What is the actual cause? We don't know that it's an
infectious agent. We have no evidence for that. So if it is a genetic
agent, well then it takes times for that gene to express itself. And
time is crucial for Alzheimer's Disease. I think it's
prevalence, not incidence.
CHAIRMAN KASS: Michael Sandel?
PROF. SANDEL: I have a question really as much for the
group as for our presenters, but prompted by this discussion and the
one we had earlier. And it has to do with stigma and the moral import
of biological explanation.
In the earlier discussion Paul McHugh was expressing a
certain nostalgia for the old fashioned, nonmedicalized picture of old
gramps was just kind of went soft in the head or the hardening of the
arteries, kind of went loopy. And Mr. Shenk actually expressed the
opposite. So there's a certain nostalgia.
It also came up when we were talking about the old
fashioned diagnoses of squirminess of boys when we were talking about
now ADHD. So in both of these cases Paul expresses a certain nostalgia
for the nonmedicalized description that has been displaced when we have
more precise or at least different biological accounts. And then the
mission that David Shenk stated in the preface to his account, his
mission was once we understand the physical basis of disease, then we
get past the stigma. So in a way, that's the opposite to the
nostalgia. It's saying we'll get past the stigma if we can
find the proper physical and medical and biological description.
And it's really those different pictures, those different
accounts about the moral significance, the biological explanation
that struck me.
So compare the stigma, David Shenk's worried about the
stigma when people just said well so-and-so's going loopy
and didn't have this account about the hippocampus. And
so my question is this, and it's not directed to anyone
in particular but it's a question that seems to me to
be raised by these presentations. If the condition of loopiness
is worthy of stigma, then why should the discovery of its
physical basis in the hippocampus dissolve the stigma? Or,
to put the same question from the opposite direction, if loopiness
is not worthy of stigma, why should we need to discover a
physical basis for it in order to become more tolerant and
accepting of it?
CHAIRMAN KASS: David?
MR. SHENK: I would like to speak to that just for a
I'm going to try not to use the word "loopy."
But I think generally you've hit on something really,
really important, which I also talk about quite a bit which
is these two worlds that we are now encountering simultaneously
and which we occasionally or quite often need to remind ourselves
are often kept distinct.
We have the world of the condition, the human condition
which we now call Alzheimer's Disease which is this person who is
going through this horrible ordeal which we can't treat very well.
You know, we do the best we can, but basically we are caring for that
person, and that is a human condition and it has to stay human and we
have to deal with it on that level. A lot of ethical and moral
Then there is this world of science. There is this idea
that we are calling it this disease. We call something a disease when
we decide as a society that we have the moral obligation and perhaps
the capability to do away with this condition. We are now in the
middle of this extraordinary war to do away with what we now call a
The people who are living with the human condition need to
know about the disease increasingly as we have treatments and as we
just know more about it that can help them. They also need to be
reminded, as I try to do, not to get caught up completely in the
medicalization of this disease. Because I think that that tends to
drag away from some of the human questions.
Let me leave it there. But I think that's really
DR. McHUGH: Can I jump in, my name having been used in
vain. Let me say to Michael that it wasn't nostalgia that I really
wanted to speak to. I was speaking about the natural human condition
in relationship to our evolving knowledge. That we begin with thinking
these are natural events. Then somebody comes along and says no this
is disease, Alzheimer's Disease, we have no cure for it, it
probably runs in your family. It's going to be awful. And then
that's a necessary age in order to differentiate from hardening of
the arteries and other things. And ultimately find the kind of cure
that Dr. Selkoe and David are talking about.
So I didn't mean it in the sense of nostalgia. I meant
it in the sense of how you deal yourselves with the ultimate dealing
with stigma by saying to people we are all in this together as a
community. We know what you're going through now and we, by the
way, doctors have brought it to you because this is the way that
During this time, by the way, we want to take care of you
just like we did take care of old gramps.
And it's that side of things that I want to make us
aware of that as we progress and all of us thinking that we're
making progress as we've got disease identified by its
characteristics, both pathological and clinical, that we are sending a
message out to other people that is really tough.
And I'd like to, by the way, end up by saying again
these presentations are wonderful. I'd like to get my
patients onto to the vaccine, if you know how do it, Dr. Selkoe.
I'm in the retail business, and how can I do it?
CHAIRMAN KASS: Peter, did you want a brief comment on this
DR. LAWLER: I don't see the stigma
issue with loopiness, hardening of the arteries, Alzheimer's
Disease. It's no one's fault. But meanwhile, you
scared us to death in a way that mere loopiness or hardening
wouldn't because you've described this disease in
a very plain yet poetic way is utterly predictable and utterly
devastating. And so it's no wonder that people—and
I'm not blaming you for this or anything—that people
really back off because it's so extraordinarily terrible
in the way Leon was describing it. It's not a stigma,
but it's just necessity and a really kind of awe inspiring
form; that you know exactly this is going to happen in this
progressive way to this person once this thing's identified.
MR. SHENK: If I can just briefly reiterate, thank you very
much for that. Just to speak personally, you know I've been in
this world now for only 6 years as opposed to 25 or more. I started out
terrified and completely ignorant, and now I know a fair amount and
I'm still terrified. I'm utterly terrified of the disease.
People ask are you able to come to grips with it by knowing more about
So I'm not denying that people who know more about the
plaques and tangles, I'm not saying that they won't be afraid
of it anymore. I think they'll still be terrified of it. We're
rightly terrified of it. But there is something about the mystery which
so many people experience. You can live with this disease as a
caregiver and a patient for ten or 15 or 20 years and never really have
a clue about what is going on.
And also as something I talk about in talks that I didn't
get into today, is that there's a very practical side
effect to knowing about plaques and tangles in the hippocampus
and knowing that it's then going to move to the front
of the brain, and then knowing that it's going to move
to these areas, which if you have a sense in your head that
there are stages and you know what you can prepare for. You
can predict what future failings and dependencies are going
to be in play.
CHAIRMAN KASS: We have a problem. It's five of one.
I'm going to let a couple of people that have been waiting, and
we've got a guest at 2:00, and because at the end of the day
we're going to have to be fairly prompt.
Let me simply ask Ben and Alfonso to make their comments.
We'll make sure that the people who are on the list who haven't
gotten a chance to speak will speak first in the subsequent session, if
DR. CARSON: Well, my questions are quick.
I wonder if either one of you are aware of any cases of
spontaneous regression of a diagnosed case of Alzheimer's Disease?
And also, is the incidence of AD different in nonsophisticated areas of
DR. SELKOE: No, I don't. I see patients who plateau
for 3 years, 4 years sometimes, very little change, maybe even longer
than that. But I don't recall a case where I or another clinician
felt this is very likely to be typical Alzheimer's Disease and then
10 years later everything is fine or the patient's gotten better.
Obviously we have to worry about the confusion with other
behavioral problems like depression. And if we don't diagnose it
right, you know, and it's hard sometimes to diagnose
Alzheimer's Disease accurately. But I think no. I think if
it's Alzheimer's Disease and it turned out to actually be
Alzheimer's Disease, we don't see regression.
And the other point was about the? —
DR. CARSON: In nonsophisticated areas
of the world—
DR. SELKOE: Yes, that's a very important issue. See,
I forgot already, so my wife is right. Forgot the question, there were
only two questions.
Bob Katzman and UCSD has done, among others, some studies
in China in people who had very limited education and looked at
incidents of what he thought was Alzheimer's dementia, he and his
colleagues. And they thought it was higher among people with less
education and less wherewithal. And that's been reflected by other
So there is some evidence that there is a protection from
higher levels of education. However, we all know well and this group
better than that, that that is a surrogate for many, many other
factors. So just educational level—so the health care is better,
But the answer is I think that people with less advanced
education get, to some extent, more than their fair share of
CHAIRMAN KASS: Alfonso briefly.
DR. GÓMEZ-LOBO: This is an information question for Dr.
Do you foresee or predict any novel therapies for Alzheimer's
Disease based on stem cell research?
DR. SELKOE: It's a wonderful question. There is a
small possibility in my mind from what I know about the biology that a
therapy based on stem cell implantation could be helpful here, but
it's a rather small possibility and that's why I didn't
mention it in my initial remarks.
I certainly would think that other neurogenetive diseases
are better candidates for treatment with stem cells than
The reason is that it is difficult to say precisely where
you would implant the stem cells. Presumably in the hippocampus if they
were delivering something beneficial. While the hippocampus is very
important to the disease, there is a lot going on outside the
hippocampus and in connections to the hippocampus. And it all depends
on what the therapy turns out to be.
Maybe stem cell implantation into the hippocampus would
rescue neurons that project to the hippocampus from elsewhere.
Maybe they would diffuse the good factor everywhere in the
brain. But the disease is so widespread in the nervous system
as compared to Parkinson's or even amyotrophic lateral
sclerosis, which is also widespread but affects the motor
system more precisely, that I would worry that stem cells
would have that uphill battle.
So, you know, editorially I would say that stem cell
research is something that's extremely important for understanding
brain function and neurodegeneration broadly, but I think the answer to
your question from my perspective is that I don't put it high on
the list for potential for Alzheimer's. I could be wrong.
CHAIRMAN KASS: With apologies to the two Bills and Diana,
if your comments can hold until this afternoon, we'll find a place
to put them in the discussion.
I want to thank Dr. Selkoe, David Shenk for wonderful
presentations and for an illuminating discussion. I hope you'll
stay for lunch and people can join you. We'll get you home in time
for your anniversary celebration.
Thank you very much.
Please, please let's be back by 2:00.
(Whereupon, the Council adjourned at
12:58 p.m., to reconvene this same day at 2:00 p.m.)
SESSION 3: AGING, DEMENTIA,
AND THE CARE-GIVER: FAMILY AND INSTITUTIONS
CHAIRMAN KASS: On the record. Let's get
started. There's some material that's at your place. It
includes she says, 'The President's Council on Bioethics Private
Tour of Deadly Medicine' which we've arranged for 5:00 p.m.
at the Holocaust Museum. It has the instructions. We will
go by cab and the information is there.
I won't read it here, but we will break, I hope, fairly
close to 4:15 p.m. as scheduled to give people enough time
to get over there. Then there's also information about the
site for dinner which is a couple blocks from the hotel on
Pennsylvania Avenue toward the Capitol.
This afternoon's session, the first session, we turn from the
patient with Alzheimer's Disease and Dementia to the caregivers,
both familial and institutional, and we are really very fortunate
to have as our presentor, Dr. Geri Hall, who is Clinical Professor
and Advanced Practice Nurse at the University of Iowa who you can
see from what she supplied us in terms of CV has been very, very
active in the field of geriatric nursing and nursing education and
has touched on many of the topics of care that are of interest to
us and are of importance in the field. You will have all seen the
specially prepared outline of some of the major ethical issues that
confront caregivers that we've read before the meeting. Dr. Hall,
thank you very much for coming. We look forward to your presentation.
DR. HALL: Thank you. I'm deeply honored to be asked.
Usually people ask me what it is I do and if you think about dementia
as this huge, enormous piece of information that families need and a
physician gives a particular diagnosis, it's almost like the dog that
caught the school bus and I'm the one who teaches you what to do with
the school bus once you have it. So I deal with families. I deal with
institutions. I deal with patients directly and do the day-to-day
management issues as the disease progresses.
With that, we recognize that there are just tremendous
numbers of every day ethical issues just trying to get your arms around
who is this person, who is this person becoming. When we looked at the
ten-year course of the illness, and now we're seeing patients who are
having the illness 15 years, 20 years, because of two things I think.
The first is that we're much better at helping families to recognize
the disease early. However, that said, in a study that we have
right now that concurs with other studies, roughly one-third of
our patients are never diagnosed at all and another third don't
undergo a rigorous diagnostic evaluation. They go to see their
family physician who may or may not run some blood tests and say
'Yeah, you know with the course of this it probably looks like Alzheimer's'
so that only about one-third of the patients that we talk about
have undergone a rigorous diagnostic evaluation with some imaging
and neuropsychological testing and that sort of thing.
But when we talk about being loopy and this morning I was
amused and interested by that, what we're looking at is so much more
than memory. We're talking about changes in visual and auditory
perception. Little by little, this patient does not see and hear what
we see and hear. Essentially, the eyes are taking the picture, but the
brain doesn't develop the film quite right. They lose depth
perception. They lose the ability to see things on a vertical plane.
They can't see things moving across a horizontal plane.
There's difficulty with planning. The patient knows what they
want to do. They can tell you what they want to do, but they can't
get steps into the right order to get something done and they're
very aware of this when this is happening. Difficulty with initiating
activity, communicating, and (one of the earliest losses) is reading
comprehension where the patient can read aloud, but they can't tell
us what they've read. So all of the clocks and the calendars and
that sort of thing, leaving notes becomes essentially meaningless.
In fact, there's a new study out from Sweden that suggests that
by the time a patient is in early dementia, they really don't use
the phone very well which is sort of the family's life-line to care.
Ability to work, in the abstract, where suddenly they are buying
magazines like crazy.
I had one gentleman recently who spent $600,000 on
Publisher's Clearinghouse because he knew that he was going to be able
to win a Jaguar and it never dawned on him that he could have bought
ten Jaguars for the $600,000 that he had invested in Publisher's
Clearinghouse. This was a patient who still looked and sounded normal
Difficulty with reasoning, learning new material.
Decreased time sense which people don't want to talk about that, but
that is enormously disabling. If you can't figure out when tomorrow is
or what it even means and your whole world is more existential, that's
a problem. Tolerating stress. Understanding cause and effect. These
are huge deficits that occur over a period of time.
Reisberg is probably the best known person for developing the
staging of dementia and the gold standard that we use is the Global
Deterioration Scale. One is where I hope you're all at now with
no cognitive decline, but then we go to very mild which Dr. Ron
Peterson calls 'mild cognitive impairment' to mild cognitive decline
and so forth.
What we look at in terms of dementia is we look at dementia
as a developmental process that are certain losses the patient has
happening and that during that time, there are certain developmental
tasks that the patient has to do. At the same time for the caregivers
and family, there are tasks that they have to accrue and the conflicts
that occur when the two tasks clash such as the need for autonomy
versus the need to provide physical care is where we see the ethical
issues on a day-to-day basis in Alzheimer's Disease.
In stages one to three, we see difficulty with abstract
reasoning, money management, shopping, employment, time sense and a
tremendous decrease in the patient's sense of risk. This is the
patient who sticks his hand in the lawn mower to see if the blades are
turning. This is the patient who tries to pull a rock out of the snow
blower or changes propane tanks with a lit cigarette. We see these
patients in the ERs all the time and it's the 'What were you thinking'
kind of accident.
But again, these are patients who look normal, who sound normal
and nobody can figure out what's going on. There are changes in
executive function, so planning and goal-setting, whether it's planning
a vacation or managing employment. One of the things that we've
seen that's a very interesting ethical issue is when do you ask
someone who has dementia to quit? Should we be giving them downsized
job which is a great idea until you realize that that patient will
have paycuts and will be judged on disability at a much lower pay
grade than they would if they just retired as soon as they discovered
Loss of reading comprehension and the patient starts to
undergo a process of grieving and that includes denial and
anger and shock and depression. Stage one to three, the patient
looks normal. They sound normal, but if the family notices
that paying of bills and finances are not quite as good as
they used to be, this is patient who is very, very vulnerable
to exploitation. Overdrafts. Motor vehicle accidents. The
driving statistics show that by the time we can recognize
signs of memory loss that patients have a 33 percent higher
incidence of motor vehicle crashes and I think it's a 42 percent
increase in the number of crashes that they cause where they
stop suddenly. The car behind them is able to stop, but the
cars behind them can't.
The other thing that occurs very early is problems with
safe administration of medication. Taking medications particularly
when you heard David Shenk talk about the list of medications that the
average person was on and that's a fairly average list. I thought it
was interesting that the patient wasn't on a cholinergic. But if you
imagine that patient trying to keep all of that straight, that's very
difficult. At this point, the family because of HIPAA rules is not
able to communicate with the physician directly. They can talk to the
physician, send a letter, but they are not able to gain information
back in a private way.
There's also no legal actions preventing catastrophes
because this patient is competent. So that the man who gave away
$600,000 to Publisher's Clearinghouse, we tried to take him through a
court of law to have him judged partially competent or something and he
was too intact to do that.
Families at this point are in a state of denial also. It
would be nice if everybody got together and really thought
about it carefully and said "Gee whiz, mom's got dementia."
This is from one of the Alzheimer's List Participants. She
said, "Ah, yes. If we knew then what we know now in
regard to my mom, my dad did say she had Alzheimer's and I
got so angry and said "No, she did not." Had I
been more astute or known more about AD, I would have tried
to ensure that happened a bit differently." Now this
particular caregiver is complaining because her sisters don't
recognize it at the same level that she does.
Gaining consent is one of the biggest issues that we deal
with in terms of families working with the medical community. Early in
the disease, the patient begins to resist change and disclosure,
therefore gaining consent is a problem. Also there is some question
about even early in the disease whether the patient's understanding of
what consent is all about is truly there. So what we see is that this
affects diagnosis, ensuring medical information. It affects driving
and money management. It affects fear of abandonment. It's been my
experience that people with Alzheimer's Disease the first question they
have once they're diagnosed is 'Am I going to be stuck in a nursing
home?' It's fear of abandonment.
We can relatively reassure patients that we will be with
them and the family will be with them throughout the course of their
illness which doesn't necessarily mean that they will be cared for at
home. The family is expected to plan and oversee care, but they have
no access to information and attempts to limit autonomy are met with
resistance by the patient, the family and members of society. People
don't want older adults to lose their rights.
We expect people with dementia to voluntarily relinquish
these activities synonymous with autonomy. Most of us don't remember
our high school graduation as well we remember the day that we got our
driver's license. These folks are not happy about giving up their
driver's license and yet in the medical literature, we're still
debating should we tell the patient the diagnosis and there are many,
many caregivers who don't want the patient to know their own diagnosis.
The legal options as they exist today if you have voluntary
surrendering of abilities, it's done in advance by the patient
and their attorney. In most states, it's called the Durable
Power of Attorney and you have to have one for healthcare
and one for finances. The family request the attorney enact
the document and it has to have a durable clause saying "This
is valid should I become incapacitated."
The patient can still make decisions. They can still send
$600,000 to Publisher's Clearinghouse. So it doesn't limit the patient
in any way. The patient can renig on it at any time and decide that
they don't want the person who's being responsible. The other thing is
that the patient's family and others have a very easy time of
exploiting the patient's finances. Suddenly, you find out the kids who
have been living in a trailer now have a house and a camper and that
Involuntary mechanisms are guardianship and conservatorship
and usually those are involuntary. What someone does is they
apply to the court in most states and say, "My loved
one is incapable of managing their finances and themselves
and making decisions" and then there's a physician evaluation
and the person is then adjudicated incompetent during a court
hearing. Having undergone this with family members and also
as a professional, this is one of the most devastating things
we ask families to do. It humiliates them beyond belief because
the people they care about most in the world are facing them
with an attorney of their own saying, "I am competent."
Unless the patient really looks impaired, the court usually
sides with the patient.
The other thing is that if you have a patient who is very
dangerous, they have guns or they are psychotic and acting out, they
are a danger to the caregiver, etc., then that patient can be
committed. The problem is when we have commitment it's usually to an
acute care psychiatric facility and then once the person has undergone
the diagnosis if they are no longer harmful within the psychiatric
facility, the court sends them home or to a nursing home and then the
patient can leave. The other thing is that people who are dangerous we
have nowhere to send them in many of the states. There's just nowhere
for them to go. People want them admitted to nursing homes, but we
have a growing problem of violence in nursing homes also. Generally,
it's because it's people with dementia who are poorly behaviorally
The dark side experience providers like myself who have
worked with this for more years than I care to admit have
developed a high degree of suspicion about family members.
There are wonderful, loving family members, but every one
of us has awful stories about exploitation, misuse of decision-making
powers, taking their inheritance early, buying a house and
then a week later moving mom to a nursing home, denial of
critical risks, denial of illness. Just because you've become
a power of attorney doesn't mean that you're going to find
it any easier to take the car from your father. It's very
difficult. There are some cases for abandonment. The other
thing is that most state laws for dependent adult abuse do
not cover exploitations. Most states are such that unless
it's a huge exploitation, it just never gets reported.
When you become a caregiver, you gradually but surely
surrender yourself and your identity. This is a real huge issue. The
first thing we found from our research is that the caregiver begins to
assume responsibility for the patient's story. You are the ones who
your loved ones will rely on for history.
I received a call a couple of years ago from a reporter
when I was down in Arizona. She wanted to know why at Barry
Goldwater's death and the funeral why Mrs. Goldwater and Mrs.
Reagan who were at the funeral were not more forthcoming about
their husbands' conditions. It was perfectly evident to me
that they were the ones responsible for how history was going
to remember their husbands and that becomes a critically important
part of being a caregiver.
The caregiver has to constantly modify their own behavior to produce
desired results. For example, David talked about the 'fiblets.'
Most caregivers realize that there are battles you die on the beach
for and battles you don't die on the beach for. So you become very
adept at blurring the truth. And very often, caregivers fail to
meet their own needs and then once you find out you're a caregiver,
it's a real shock. That isn't a label that any of us volunteer
One of the biggest problems we have right now is roughly
35 percent of people with Alzheimer's and related disorders
live alone and at stage four. We find that they get into real
trouble. They are resisting social services. They resist
any help. They resist family intervention and so we get patients
into a crisis situation. Now many of these people have no
children which is going to become an increased problem as
the baby-boomers age that people with no children and no living
relatives have nobody to serve as surrogate decisionmakers
for them and few states have real public guardians who can
go in and advocate for the patient and act as surrogate guardians.
Consent for research. Three research physicians asked me
to put this in. At stage three and four, the patient really can't give
informed consent for research. Families very often are desperate for a
cure and so they'll volunteer their loved ones for research, but this
is a critical ethical concern among people about having guidelines for
gaining participation. Again, truth-telling, failure to disclose the
diagnosis to the patient is a huge issue still and then the right to
grieve. Do we tell people lies or do we tell them about their
diagnosis so that they can grieve?
In stages four and five, we are looking at placement for many
of our people, particularly those who live alone. Basically,
if you have a caregiver who is 85 taking care of someone who
is also 85, trying to provide 24-hour-a-day, seven-day-a-week
care is very, very difficult. About 60 percent of people
living in assisted living now have dementia. Many have no
access to professionals or regulations about medications and
families pay extra for the personal care that they receive
there. Families chose the least restrictive alternative because
it's a nice place to go. It's not a nursing home. They have
concerns about dignity. The issue is that many people in
assisted living right now are not getting the care that they
need because it's much more than simply being a nice person.
Dementia-specific ALFs are starting to rise up and a
dementia-specific ALF can be anything. It can be a locked door. It
can be a very therapeutic program. There are no regulations about this
at this time. The other thing is that many times assisted living
facility owners say 'Well, we train our people to work with these
people,' but they are people with no healthcare background. So we've
had some real problems with that particularly with violence and
psychosis. They are not bound by the limitations or the regulations of
the nursing home and we're seeing eviction of some of these patients
with nowhere to go.
Stages five and six, we see people in nursing home versus
in-home care. With in-home care, this is a real significant problem
because in-home care is more expensive if you have 24-hour-a-day,
seven-day-a-week care. Most in-home care is provided by family members
and they don't have much in the way of professional oversight. What's
happened is that Medicare has funded what they call 'skilled care.'
Because of its nature of being on-going, long-term and non-restorative,
Alzheimer's Disease, even though it requires a high degree of skill to
manage it, is called unskilled care. So there is no in-home health
coverage for the vast majority of patient needs.
There are few resources in terms of payment mechanisms.
The other thing is that if you have adult children taking
care of their parents, they are endangering their own financial
security in the future because they are dropping out of the
work force or significantly reducing their hours.
The family conflicts are tremendous. Wayne Karen is probably
the most knowledgeable researcher on family conflict and he
found that families fought and bickered to create energy to
cope and that this was a really important part of the disease
and when he as a family therapist got families to stop fighting,
they fell apart. So now what we do is focus on the ability
to fight fairly so that they can help having —
Families are afraid of stigma and it is stigma. I've done
a lot of historical research and I'll forward some documents to the
Council. There are still families that adhere to the idea that
dementia is a form of divine retribution and that this is very typical
time from colonial times in the United States that that's how we've
I have had one son write me that he wanted to take his
father's diagnosis of Alzheimer's off of the death certificate because
he did not want that stigma known in his family. Now that's extreme,
but many, many families did not want anyone to know. One of the
biggest ethical issues that caregivers have is at what point do I tell
friends, at what point do I tell family, because that's the beginning
of the end for the caregiver in terms of this is really the disease and
I can't deny it anymore.
Genetic testing, families are interested in it. Most
physicians at this point as you heard are not interested in telling
families that they have some potential for this disease. Families fear
the disease. They fear the source of care and they fear nursing home
The long term care issues are first of all the right of
the resident to have his or her reality versus reorientation.
Reorientation for a patient that doesn't see and hear what we see and
hear causes agitation. It causes aggression. It causes fear. It
The rights of the individual versus the rights of the
aggregate community. The family's responsibility is to provide for
that individualized care and needs and it doesn't end once the patient
reaches long term care. The facility has to do individualized care
planning, but they also have to consider the needs of the aggregate
That's where we get into clashes and ethical conflicts of
"If my mother is acting out, if she is pushing other
residents down, if she is spitting on people, if she climbs
into bed with people" that sort of thing, 'my mother
has a right to do that because she's confused.' Yes, but
you have to consider the global population. That's been something
that nobody's been able to really get their arms around.
The right to assume resident risk versus staff responsibility
to protect. This is a huge issue that is playing out in the
courts right now and that is 'Should my mother be allowed
the opportunity to get up and fall or should we tie her down?'
We know restraints cause strangulation. They cause terrible
accidents and injuries. However, we are seeing families sue
the minute someone falls.
The staff rights to a safe working environment. Many
studies have shown that nurse aides feel that violence is a normal part
of their job and they don't even report it. Nurse aide work is about
the most dangerous work in America outside of farming.
Then who owns the resident? Is that person a part of
themselves? Do they belong to the family? Who is the one who's most
responsible? That's a tremendous conflict.
At stage six, we have a patient who is losing weight. They
are incontinent, losing the ability to walk. Sixty-one percent
of those folks at home are wandering away in the middle of
the night and we don't have a lot of good systems yet for
finding them. Freedom to wander versus the need to be confined.
So we restrain them or not? Is it right that if someone is
agitated that we chemically restrain them? These are huge
And they are being served inch by inch by policy and also
by research, but they are still dilemmas. Treating pain is huge
because pain is whatever the patient says it is, wherever they say it
and whenever and these patients don't complain about pain. So we have
to look at nonverbal indicators.
Stopping cholinergic medications. Families wrestle with
this. At what point, do I stop the Aricept and the Exelon
and how do I find that? I've seen several cases in my own
practice where someone has discontinued the patient's cholinergic
medication only to find that that patient is no longer walking
and it was a way of keeping that patient from wandering into
someone else's unit.
The other thing is that there was a very interesting article posited
in The New York Times several months ago about are
these medications even valuable because they give so little
relief. One of the ABC reporters, Roger Sergel, sent around
to his team of experts of which I'm considered one and said,
'What do you think?' The academics all said, 'Well, the research
shows' and all the clinicians said, 'But in my practice we
see.' So there's that ethical issue of do we go with the
evidence or do we go with what we're seeing in practice.
Stage seven is the one where everybody is aware of the
problem. The patient is totally dependent and they are in an
infant-like stage. Reisberg has done some wonderful work in what he
calls 'retrogenesis' which in itself is an ethical issue. That is if
you look at Piaget's stage of development that Alzheimer's takes that
patient back inch by inch by inch developmentally so that by the time
they reach stage seven they are at three months of age, unable to hold
their head up, etc.
The family is exhausted, but they have to make the most
important decisions of their lives. Do they feed the person
or not feed the person? Most of us who are in the business
now are taking Volicer and Hurley's advice found by research
that tube feedings do not prolong life nor do they enhance
the quality of life. And the same with treating pneumonia.
After the first treatment with a recurrent pneumonia in the
last six months of life does not increase your chances of
survival and it doesn't successfully treat it either.
The Comfort issues are very difficult. Do we give Valium to relax
muscles? What do we do? Hospice, until about the last two years,
has never covered Alzheimer's Disease and now we're beginning to
see hospice coverage on a regular basis. That is most families'
Euthanasia or assisted death, I think a lot of families
worry that as they see their loved ones fail to take liquid or food
that they are really afraid that they are starving their loved one to
death and that they are committing euthanasia or assisted death when
the patient really is simply shutting down.
Then when to let go and let God. Very often, society has
recrimination for these decisions. I think ethical issues of dementia
are best understood by families as they occur. As somebody who has
worked since about 1978 with dementia, one of the things that I
realized when my husband's family developed several members with it is
that until you live with it you have no idea. I mean I had been
counseling people for year after year after year and then we went to my
husband's uncle's house and at the end of the visit, my husband and I
were so frustrated we couldn't get our clothes into the suitcases. We
threw them in the trunk of the car. You can't really understand what a
family has to go through until you've walked in those shoes.
One of the things that came out last week in The New
York Times was a thing by Barron Lerner and he said, 'The
Reagans' decision not to go public while understandable nevertheless
deprived Americans of the opportunity to learn how a family
confronted questions crucially relevant to the Alzheimer patient
and their families. Did Mr. Reagan fill out an advanced directive
indicating what types of medical treatment he did or did not
want as he deteriorated? Why did the family choose to have
the broken hip repaired in 2001 despite his dementia and was
Mr. Reagan's pneumonia the cause of his death aggressively
treated with antibiotics or was the disease allowed to be
the old man's friend?'
I think this statement demonstrates the most public recrimination
of this family that has just emerged from this long goodbye.
I think the ethical issues demonstrated just by that statement
should be enough that the Committee should understand this
is a huge issue. Thank you.
CHAIRMAN KASS: Thank you very much. I
want to open the floor for discussion. Dr. Hall, thank you
very, very much for a very illuminating presentation of the
complexity of this subject. Even if we haven't yet been in
the shoes of the caregivers, I think it is much clearer both
from what you've written and what you've presented here.
Does someone want to open up the conversation? Robby George.
PROF. GEORGE: Dr. Hall, just a question
of clarification. Toward the end when you raised the question
of feeding tubes, I thought I heard you say that in many cases,
feeding tubes do not prolong life or feeding by the tube does
not prolong life and, of course, it's not therapeutic. It
doesn't do anything for the underlying disease. Is that in
fact what you said and does that mean that the patient will
die likely at the same point whether food is administered
by the tube or not?
DR. HALL: Yes, I'm glad you asked because it's a really
important point. Feeding tubes, Volicer, Volicer and Hurley did the
seminal studies on this where they found that placement of feeding
tube, either nasogastric feeding tube which has been found in another
study to be the single most uncomfortable procedure that's done to
anyone done in the hospital and peg tubes which is feeding through the
stomach directly, do nothing to prolong life. The reason for that is
that most patients with Alzheimer's Disease die of aspiration pneumonia
which is breathing in either food or fluid. However, in the case of
Alzheimer's Disease, it's usually that they are aspirating their own
saliva, not food or fluid.
PROF. GEORGE: Could I follow up then because you
raised then the question of concern that family members have that not
authorizing the feeding or requesting the feeding by these means
worries them that they are participating in euthanasia or assisted
suicide. Is what they're failing to see here is it that the purpose of
not administering the tube is either that the tube itself is so
uncomfortable and you want to spare the patient the discomfort or the
person is going to die at the same time whether the food is
administered this way or not or both? Is that what they are missing?
DR. HALL: I think the biggest fear that families have is
(1) that they may be first of all hastening death. The other thing is
that families are very worried that they are going to inflect
additional suffering because there are myths about people who starve to
death that it's incredibly painful and that sort of thing.
The research bears out that people as they stop eating after they've
stopped taking food and fluid for about 48 hours, that they
go into sort of a euphoric state and they are actually more
comfortable than they had been taking food and fluids. If
you talk families through that and work with them on that,
they understand that and it's a much simpler and easier death
rather than trying to force tube feedings, etc.
PROF. GEORGE: Then finally, is the situation the same
with respect to the aggressive treatment with antibiotics of pneumonias
or is that really a different situation both in reality and as far as
your experience with the families is concerned, their perceptions of
DR. HALL: Again, it's 'am I hastening death'
as an issue, but most families understand the concept of pneumonia
as the old man's friend kind of thing. Pardon me for being
sexist. But what we see is, too, that the patient becomes
sick so quickly again or we give a course of antibiotics and
they remain sick. So it's a little bit easier in my experience
for families to not go with antibiotic after antibiotic after
antibiotic because it's essentially useless.
CHAIRMAN KASS: Dr. Ben Carson.
DR. CARSON: Just to follow up on that, is the implication
then that when a person reaches the stage where they will not eat that
they necessarily are going to die within a month?
DR. HALL: If the person has reached the
stage where they will not eat and it's been shown —
some patients will stop eating for a while and start eating
again. So we keep offering food and fluids. But once they've
totally stopped, I think there's one case in the literature
where the patient lived 45 days, but I think within a month
DR. FOSTER: Well, let me just comment on that briefly.
One can starve for very long periods of time with no detriment at all
as long as you take fluid and vitamins. At Rockefeller University,
they used to take massively obese people and give them no calories for
a year or a year and a half. It doesn't make any difference about
that. They will die quickly usually within about ten days or so if
fluids are not contained in it. So it really is not to do with
anything about the calories, about the lack of the food. It has to do
with the lack of fluid.
So if you take neither food nor fluid then death comes
usually very, very quickly. There is almost no hunger. The technical
reason for that is when you starve your body makes substances that are
called ketone bodies, aceto-acetic and beta-hydroxy-butyric acids and
it's been known for a very long time that the ketones take away the
sense of hunger in the brain. So if the ketones are elevated, you do
not have a sense of hunger doing that thing.
Now you drink a Pepsi-Cola and that goes away. So you have
to do it. So the issue is that and how long you'll live without food
depends on how much adipose tissue you have, how much stored energy
that you have. So if you weigh 400, 500, pounds, you can live for very
long periods of time.
I used to do medical television for the Public Broadcasting
System and I had Jules Hirsch from Rockefeller University
on the weekly program and he had a Hungarian princess there
and she had been under starvation for a year and a half and
she looks and felt absolutely wonderful despite the fact that
she hadn't eaten anything for a very prolonged period of time.
DR. HALL: But if I might add, this is a patient
also who is not clearing saliva so again the pneumonia generally
kicks in also.
DR. FOSTER: I was just answering Ben's question about how
long whether it would be a month or whatever.
CHAIRMAN KASS: I would like to ask about
the ways in which current public policies whether about insurance
coverage or Federal funding or other sorts of things are getting
in the way of or not doing what they ought to do to facilitate
the best possible care by those families that are struggling.
You have a sentence in the document that you sent us where
you say 'Federal policies state that dementia care is custodial.
Those families do not qualify for visiting nurse or skilled-care
facilities.' There are also questions about whether we're
doing enough for respite care for the caregivers. I just
wondered if you would talk about the ways in which understandably,
well-meaning or perhaps just not sufficiently thought through
policies are in fact perversely structuring things or, at
least, not doing enough of what they could be doing to make
this kind of burden lighter and to make the care of the patients
and the caregivers better.
DR. HALL: In essence, the only real funding
for long term care that's available is for people who are
impoverished in a nursing home under Title 19. There have
been Medicaid waivers to try and keep people in the home with
Alzheimer's longer, but again the family has to be impoverished.
I want to be very clear. I don't think there is any ideal
site for someone with Alzheimer's Disease. The average family
tries as hard as they can for as long as they can to keep
the person in the home because of filial obligation, because
of the need to preserve funding within the family because
of the cost of long term care. However, some patients do
much better in a group setting where there are activities
and appropriate care. Whereas at home, they might be vegetating
with no activities and socialization, etc.
However, if only skilled care is covered and we don't recognize
that behavioral care unto itself is skilled, we run into the problem
of 'I can't get a public health nurse to come out and see one of
my patients because Medicare doesn't cover it.' We're just finishing
up a four-year project at the University of Iowa where we have public
health nurses that have gone out and done individual visits with
families in rural areas. What we have found is that the families
keep the person at home for much longer. The caregivers report
less physical illness among themselves. They are able to pick up
and understand what's going on with the patient.
The average physician today, and this is with all due
respect, is pushed to see a number of patients during the day that can
be in access of 25. So the idea that a family physician who had 15
people in the waiting room has a lot of time to go through patient
education. It has to be done somewhere and we find that nurses in the
home do a very good job of reinforcing what the physician would want to
say, also in basic care techniques that can keep a family going
longer. The other thing is picking up on psychiatric types of
behaviors that families find the most problematic and treating them in
the home before they result in placement.
So if we could have more funding for respite, yes, families
don't tend to want to use respite until they are absolutely
desperate. But if we could have one thing, coverage for sporadic
nursing visits, intermittent nursing visits, would make a
huge difference in the quality of life and the patient's ability
to remain in the home over a prolonged period of time.
CHAIRMAN KASS: Thank you. Janet Rowley and then Bill May.
DR. ROWLEY: Well, I'd like to follow up on the tenor of
your question but focus more on HIPAA because this is a problem in many
other areas of medicine and I hadn't really thought of it in the
context that you brought from your experience.
CHAIRMAN KASS: Janet, excuse me. Does
everybody know what this is? Would you say what HIPAA is?
DR. ROWLEY: It's a patient health something patient
CHAIRMAN KASS: Health Information and Patient
DR. ROWLEY: So that these are in order to protect
the patient's privacy from individuals who should not have access
to their medical records, the HHS with Congressional authorization
has really instituted new policies which are going to have all sorts
of untoward bad effects, but I wanted just to focus on the effect
of this on the patient with Alzheimer's, on the family and on the
ability to try to provide more informed information. If you could
expand on that a little bit and then is anybody trying to help provide
feedback, say, to HHS or to Congress where some of these provisions
might be modified?
DR. HALL: Your first question, it's a
tremendous effect on us. We've always had to be careful as
providers what we could share with the family and when you
have someone who has a dementing illness a lot of the time
they are very forthcoming and say, 'Please tell my son or
please tell my daughter. Please talk with them.'
A lot of them though don't want to write that down or if I
have a patient who's living alone, I have a lot of patients who live
alone, and they are getting into trouble and they are psychotic. They
are living in conditions that could best be described as wretched.
They are not eating. All kinds of problems are arising or they are
being exploited. If I say to the patient, 'Can I tell your daughter'
and they go 'No', then there is nothing I can do under HIPAA.
Now it really has always been that way, but HIPAA has drawn
more attention to it. We also have families who call the physician,
wanting to talk with the physician about very often people they are
caring for in their own home and the physician can't talk back to them
because they don't have a written release specific to that person.
Alzheimer's is a disease such that you have to have as a
caregiver almost an intimate relationship with your providers and it
has to be a team of providers so that you have your physician. You may
have a psychiatrist. You have a nurse. You have a social worker and
everybody has to be talking in order for there to be care that works.
This has just been a tremendous barrier for us.
I don't know of any dementia specific providers who don't
really respect the issue of the concerns about family exploitation
and who really don't respect private patient confidentiality.
But there are times when you really have to sort of just say,
'Well, if they sue me, they sue' because sometimes a patient's
safety is what it hinges on.
Some of us have written Congress people. I know people on
the Alzheimer's list have written their Congress people because it's a
huge issue. Families need access to the patient information.
CHAIRMAN KASS: Bill May. Dan Foster.
DR. MAY: A couple of us were left over
from the earlier session, but these two sessions overlap a
great deal, Mr. Shenk's presentation and yours. I would like
to make a few remarks bearing on some overlapping points from
both of you. I think somewhere in Shenk's manuscript that
he gave us he talked about a death by 1,000 subtracts which
was a vivid phrase describing this relentless process of impoverishment
that goes on.
But what both of you have also indicated that there's a
death by 1,000 subtracts in a way that can also go on for
the caregiver. It's not simply this progressive impoverishment
that the care receiver suffers, but the caregiver. A vivid
phrase is, I guess, Mrs. Reagan's phrase that 'he's gone to
a far country.' Here the person you're caring for has in
a sense increasingly abandoned the caregiver.
So you face that problem, do you abandon the care
receiver? But there's not only the problem of the patients in a sense
absent in himself because of this illness and therefore abandon the
caregiver, but also the community's avoidance which in various ways is
quite understandable. Again a vivid phrase 'the caregiver becomes a
prosthetic device' and the community's tendency to avoid, surely that
relates to the caregiver's reticence even to speak about it because
they know that it's going to have huge ramifications for their social
life because immediate friends and others feel that they have so little
Maybe in the short run, yes, the courtesy visit, but in
the long run, sustained help is very difficult to come by.
And then meanwhile there is the larger problem, societal abandonment
that we tend to be acute care gluttons but preventive and
long term care anemics in the whole prioritorizing of our
budgetary allocations for medicine. I think that's the point
that Leon Kass was trying to drive home.
What are the policy ramifications for all this by way of
respite care, by way of the skilled training nurse coming in to offer
some education because the day-by-day caregiver needs skills and so
they need to be empowered as much as you can offer them. We don't
offer enough either by way of temporary relief or by way of training
that would be helpful.
Maybe a further comment or two. Gil Meilaender has raised
across a couple of meetings this question, 'In what sense is the person
really there?' In Reagan's statement, 'He's left for a far country,' I
found a vivid phrase. Gil has tended to argue, 'Well, the body is
still there and the person therefore is still there' but
psychologically I wonder if there's an important way in which we have
to acknowledge that he is not there in order to be there for what we've
actually got. As long as you hammered too hard this is so and so, then
you have the problem of constantly dealing at turbulent levels at that
question of loss and to what degree psychologically does one need to
let go and accept that the person is absent in order to sustain a kind
of presence to what is actually there.
I used at an earlier meeting the analogy to the problem of
the birth of the child who turns out to have massive deficits. You may
have to bury the dream child in order to be free to relate to what in
fact you've gotten.
Now that comes home in your comments, but also in Shenk's
comments on this whole problem of role-playing with them.
Fiblets, you refer to and white lies and so forth. We feel
there's kind of a lack of decorum in playing along and yet
both of you have expressed so vividly the way in which you
try to force reality on them. It can be very agitating and
I've given overlong comment, but I will offer one story.
I happen to be ordained and I have on occasion, because I
don't have a church that I care for, delivered communion to elderly
people who could not come for communion and I've been assisted by an
elder who goes along with me on such occasions. On one occasion, I
started to bring the communion elements and this woman became very,
very agitated. She said, 'Frank's not here. Frank has to be here.
Frank should be here.'
My elder was very upset because she was very upset and he
went out looking for Frank. Well, he came back, of course, somewhat
sheepishly and said, 'Frank's been dead for 17 years.' We proceeded
with the service, but it was very interesting irony that we were trying
to extend community and the very effort to extend community to her
reminded her of the experience of community which she didn't have and
he should be present. Afterwards, I told the elder had he returned
with Frank I would have thought he was grossly under employed as an
elder because he would have raised Frank from the dead. The ironies
abound in trying to deliver care where the person in a sense is absent
and how psychologically do you sustain presence?
DR. HALL: One of the things that hasn't been brought up
today that is very disarming for families because they do disengage
somewhat. The person doesn't recognize them and it allows you to
disengage slightly, but then they have what we call 'windows of
lucidity' where for a number of minutes or even an hour or so, the
patient comes back. It's like clouds clear and then there's this very
clear lucid sort of few statements or what have you and then it goes
back. That's one of the most devastating things that families have.
The other thing that — So I work with patients in
end stage very often and I see lots of windows of lucidity
and I also see that as a patient nears death very often they
will have up to a week of not total lucidity but they are
a lot more alert and aware than we ever thought they were.
So I'm not willing to say that the person has gone to another
place. I think they are in there, but they can't get out
because during windows of lucidity we'll hear things like
'This is awful' or 'I'm suffering so' or 'I hope this doesn't
go on longer.' So to a certain degree for many, many patients
right up until the end, they're in there.
The other thing that happens that you talked about that
I think it is so critically important is that caregivers as
I said in my talk become prosthetics. Someone once described
them as a satellite that totally rotates around the patient
and then when the patient becomes placed or worse they die,
this caregiver has no reason to exist. We'll see some in
long term care develop very strong relationships and continue
to visit long after their patient is dead. But to reestablish
themselves outside of this caregiving dilemma is very, very
There's a lot of positive things that comes out of a caregiving
relationship, a sense of achievement, a sense of accomplishment,
a sense of commitment, a sense of survivorship. So I've never
seen a family that I didn't think got stronger from the experience.
CHAIRMAN KASS: Dan Foster, Gil and then Paul.
DR. FOSTER: Dr. Hall, I don't know whether you can answer
this question and I don't know that either another player has entered
in particularly in the issue that we were addressing a little while ago
about the feeding decision. That is that the Pope has made clear that
at least the removal of feeding tubes is unacceptable. I only have
read the news reports whether Paul or somebody knows whether that
involves also the necessity to place a feeding tube or not. I don't
know, but the question would be do you anticipate even for non Roman
Catholics for example because of the stature and influence that this
might shift to persons who were near ready to say that artificial
feeding is not going to help which I think the evidence is very clear
about that. Do you think that will complicate the problem or not?
DR. HALL: I've given this a great deal of thought because
when I saw it, I kind of went 'Ou.' I think it doesn't make the
decision any easier. I understood that it was only for removal of
existing feeding tubes which by the time someone with Alzheimer's
Disease has a feeding tube, usually they don't live long enough that
somebody's going to worry about taking them out.
In fact, I reviewed a study for 'Annals of Internal
Medicine,' I think it was, that had a staggering statistic like 30
percent of people going for gastrostomy tubes die on the table. So
these people generally don't live very long. There are some patients
who will have bulbar symptoms and they tend to have a prolonged period
of feeding tube, but the average Alzheimer's patient does not.
CHAIRMAN KASS: Gil Meilaender and then Paul.
PROF. MEILAENDER: Just a quick comment on Dan's. I
think the Pope's statement was about patients in persistent vegetative
states. That's a different issue.
DR. HALL: No, the end of Alzheimer's is
a persistent vegetative state.
PROF. MEILAENDER: Well, we'd have to talk about that
more and certainly, his statement does not distinguish between
withdrawing or placing. That's not the moral issue, but I think the
issue is a little different. But let me just come to what I want to
talk about. There's something that I'm really mystified by, not as a
criticism of anything you've said, but just mystified by. It's not the
largest global issue here, but it has to do with the issue of
On the one hand if I got you correctly, you think it's
important that patients should know their diagnosis, that it should be
communicated. Denial should just go on forever here and there may be a
whole range of reasons. Maybe you could say a little more about that.
On the other hand, it's probably a good thing not to challenge their
reality at various places along the way.
And both of these things individually make sense to me.
Can you just say more about are there certain moments when
you're supposed to tell them truth? Are certain people supposed
to tell them the truth but not others? I mean maybe a professional
gives the diagnosis, but the caregiver is engaged in the field.
But just say more about how you see this truth-telling or
fudging of reality working itself out.
DR. HALL: There are two different sets
of things that we're really talking about. The first is should
the patient know their diagnosis and there's one study again
done by Wayne Karen where he followed patients for a year,
those where the family had said, 'I don't think Mom should
know what's wrong with her' and the other ones where we've
said, 'You have Alzheimer's Disease' or 'You have a brain
disease and that's why things are happening to you.'
What happens is if I'm going to ask you or anyone else in
this room to give me your driver's license and then I want
your MasterCard and what else have you and I say to you, 'There's
not real reason for this. You're just kind of getting old,'
well, you know that all of your friends are old, too, and
they're not surrendering their license and their MasterCard
and so what happens is we get this artificial barrier that
goes up between the family and the patient and the family
becomes the enemy. Wayne in his research found that where
families did not share the diagnosis, people became extremely
paranoid and were often on medications within a year for the
Most health professionals that I work with including myself
will talk to the patients in a very kind way about the fact that they
have a terrible disease and that this disease is a brain disease and
sometimes we'll use the 'A' word and sometimes I don't depending on
what the patient prefers. But most of us believe that we are obligated
to tell our patients what's wrong with them because they are our
What the family does with that in terms of the diagnosis is
very much a family decision. I've had families talk very eloquently
about how they don't see any need to put their loved one through pain.
But if I have a patient who's saying 'What's wrong with me' or 'I think
I'm going crazy,' those are very common things, then I want that
patient to know that they're not going crazy but they do have a brain
The other thing is the therapeutic fiblet and this is where the
patient, usually due to some reminiscent things that are going
on, believes that their parents are coming for them or they
believe they have to go to work today or they have to go out
and harvest or what have you. A careworker will say, 'Well,
you cut the grass yesterday.' That's a therapeutic fiblet.
Recently in the Geriatric Nursing Journal,
someone asked an expert about that and the person said, 'This is
unethical. You're lying to the patient' and on and on and on. It's a
real issue of dissent between families and families, families and
professionals and professionals and professionals. Is there a place
for therapeutic fibs or do we do truth telling all the time?
In the whole scheme, it sounds like such a huge issue, but particularly
when I'm training young health professionals and they say, 'You
lied to that patient,' it's a comfort measure as much as anything.
Saying to a patient, 'Your mother is dead' over and over and over
again certainly can produce a lot of negative and uncomfortable
responses. Where if you say, 'Tell me about your mom. Are you
thinking about her?' etc., can produce a whole different realm of
CHAIRMAN KASS: Gil.
PROF. MEILAENDER: This is just a question to ask out
of ignorance. It's a little different from the truth telling question,
but if my physician formally diagnoses me with Alzheimer's, do I have
to relinquish my driver's license?
DR. HALL: Only in one state. California.
PROF. MEILAENDER: Okay. Well, I don't plan to move
CHAIRMAN KASS: Just before Paul comes in, is your
puzzlement about the truth telling question resolved?
PROF. MEILAENDER: Well, it must not be because the
Chairman doesn't think it is.
CHAIRMAN KASS: No, it was resolved for
me, but it was not a puzzle to begin with which is why I wondered
whether you're content. It seems to me in both cases it's
not some loyalty to the abstract principle of telling the
truth, but in both cases, governed by what the professional
regards as in the best interest of the patient and the family
in this. As the circumstances change, what you say and there
are questions about how you speak and when you speak and all
that, but the presumption that the patient is better off knowing
that he or she has the disease is perfectly compatible with
the presumption that the patient is better off not having
their reality or their errors corrected.
PROF. MEILAENDER: Look, yes, I agree with that and I
understand that and I also agree that thinking about what is really in
the person's best interest is actually the crucial question to think
about there. It's just that it seemed to me without having
communicated this, it's not as if I spent my life communicating this
information to people, that a person might resist the information as
easily and even more strongly at the start.
I can imagine many people resisting the communication of
such a diagnosis and yet at that point, there seems to be a felt need
or importance to get the diagnosis across whereas at some other point
in a certain sense, you've just let it go. I was just trying to figure
out how that works. That's all.
CHAIRMAN KASS: Good. Paul McHugh.
DR. McHUGH: I'm not sure I'm going to get this to a
question. I'm going to start it with my admiration for you, Dr. Hall,
and the wonderful things that you've achieved and the things you've
done to help patients and also to build up this concept of a team of
people needed to care for the patients suffering from this condition.
I'm full of admiration for that.
I also believe that this success that you've had and these
good things that you've had have come from benefits from taking care of
these patients and these families. I was happy to hear in really the
other question you said that lots of positive things came out of this.
In order for somebody like you and me who knows a lot about Alzheimer's
patients really should tell the group about the benefits that come to
families and to the caregivers for caring for these patients and for
bringing them through this ordeal.
The problem for me all day today has been the great emphasis,
and it's important I suppose to instructing others, of the
burdens, the aches, the pains, the distress of this disease
and what it brings to everyone. In that process, we spent
a lot of time talking about pathology, pathology of denial,
betrayal, prosthetics and the like rather than talking as
well that comes along with it and I'm sure that inspires you
the great achievements that come.
Now people who are my age and have lived in families before
1960 about, about 1960, almost all of us had family experiences with
sick, infirm, demented patients in the household. It was only after
about 1960 that we've shifted to the idea that this is so awful that we
have to pick everybody up and get rid of them and get them off
Now when I was a young person living in my household with
actually two people elderly and in their 90s that my mother was caring
for, there was an important not only blessing from that that came from
that right at that noticing what was happening and how people felt
about one another, but it was also important for the children, the
family, the world outside that this is the truth about human kind that
we live our affections, our loves, in fact, express themselves as we
believe through the flesh itself.
How do you learn not to burn out in this process and simply emphasis
the pathology? How do you help the family? I'll put it a
better way. How do you speak to the family so that their
interest in caring for these cases is brought to the fore
and emphasized for them so they can see the positives that
are going to come because there are going to be positive days?
Again you emphasize the phases of this condition. In the
early phases of this condition, it's not terribly awful to
take care of most patients with Alzheimer's Disease. How
do you weigh for the family and for everyone else the positive
things that are going to come that include not only the care,
the caregiver, the patient, but the broader context in which
where you use to be accustomed to this side of life?
DR. HALL: That's a really great question.
When I was working at the Mayo Clinic, I was seeing seven
patients a day and one of the clerks came up to me one day
and she said, 'You know people come into your office and they're
just dragging and they walk out and they're just dancing.'
She said, 'What is it you do in there?'
I do two things. Well, I guess I do a bunch of things, but
(1) I talk about the disease objectively that this is a disease and
we're going to get through it. We instill hope. We use humor. I do a
lot of teaching families how to look at it with humor. You talk about
storytelling. One day, I was sitting with one of my caregivers who was
a nurse. She was a surgical nurse and she wanted to cut something
out. She said, 'What can I cut out and then it will be better.' I
said, 'Nothing.' And her husband started to ask a question and she
just lost it. She said, 'Don't ask that question again. Don't ever
ask it. I've had it. You can talk about anything you want, just don't
ask that question again.' And he turned around and he looked at her
and he said, 'Well, let's begin with freedom of speech.' She fell on
the floor and I fell on the floor and you teach people that it's okay
to whine, that they have humor. We teach them a lot about control.
My primary area of research has been a model called
progressively lowered stress threshold which says that there are six
things that will produce problem behaviors and what we do is we teach
caregivers to choose how to control for those six things, including
fatigue, change, the level of stimulus and a bunch of other things.
Once caregivers get that idea, my research shows that we
have decreased hospitalizations, we have decreased nursing
home placements and we have statistically significant decreases
in 9 of 11 behaviors including psychosis so that they are
empowered to use that disease. Then I'm just there for them.
CHAIRMAN KASS: Bill Hurlbut.
DR. HURLBUT: I want to ask you a question that I hope will
come up in our next session, but I want to get your perspective on it.
It's a bit of a broader question than just Alzheimer's Disease. It has
to do with the whole question of the changes of aging and in saying
this, in asking this question, I don't mean in any way to question the
difficulty of this condition nor to erode the notion that we should
work for a cure of it.
But during the lunchtime, I was talking with Dr. Selkoe
about the sense in which our society right now seems to have
replaced its fear of cancer from about 30 years ago with a
fear of Alzheimer's Disease. I understand why being at the
heart of what we see as our humanity that sense of loss of
mental function is a touchy subject for us. Nonetheless,
we also sense that there is something about Alzheimer's Disease
that also has a quality that's benign. It's like a slow turning
down of the volume or a soft ending of a symphony.
Now I don't want to any way romanticize that. I just want
to ask you for your perspective on how bad is Alzheimer's
Disease versus other ways to die and to what extent does this
mean that we should or shouldn't take extra consideration
of the meaning of dramatic interventions? I'm thinking of
a full range of things because from listening to Dr. Selkoe,
it's obvious that there might be treatments that start as
early as late childhood or early adulthood. There already
are possibilities for preemptive interventions in the very
existence of the patient by prenatal screening or preimplantation
diagnosis and then we might see later during the manifestation
of disease many questions about how drastic a risk do we want
to take to treat the patient. Could you put this all in this
larger context of what Thomas Cole was trying to deliver to
us this morning that very fascinating question of the meaning
of our frailty and fit it into the intractable vicissitudes
and acknowledging that there might be something spiritually
salutary about our transition through what he called the heroic
process of humiliation?
DR. HALL: Okay. I'm going to begin with the part I can
deliver first and that is the comparison of a frail person's death with
an Alzheimer's person death. One of the things that we really haven't
addressed here is just how difficult the care is to provide. It's not
a simple matter of grandpa fading away. People with Alzheimer's
Disease very often don't go gracefully or quietly into that good
night. It's not 'Gee, I can't bathe. Can you help me?' It's like
'I've already bathed and if you touch me, I'm going to fight you.'
What we see are the most negative of our personality characteristics
coming forward and our ability to communicate verbally and
in written language or anything what we want at the most basic
level. So that about two-thirds of the way through the disease,
you have someone who's talking word salad. They are resisting
personal care. They're not just incontinent, but they're
fighting you because they don't want to wear an adult protective
With someone who is frail if I'm providing care, I'm
providing the bathing and the dressing and hopefully once I'm past that
and the provision of medications, they are autonomous. They can tell
me how they want to spend their time. A person with Alzheimer's
Disease once I've gotten past the bathing and the medication and that
sort of thing, they don't know what to do. So if I don't fill that
time in a meaningful way for them, they are going to be tearing the
wallpaper down. They are going to be wandering. They are going to be
eating the plants. It's very much like having a toddler. If anybody
was in the food court at noon watching that child pitch a fit, that's
very much what you have in many stages of Alzheimer's Disease.
The other thing is that when you have a toddler who is
developing, you have someone who is following a predictable course and
once you've seen one patient with Alzheimer's, you've seen one patient
with Alzheimer's. You cannot generalize other than some common things
about the pattern of decline. But basically as different as everyone
else is in this room, you're all going to cope with it very
differently. So it is a more horrible death.
The other thing is that once you have a patient who isn't
seeing and hearing what the rest of the world sees and hears there are
people in the house that are afraid of their own mirror image. They
are afraid of moving things. It's just extraordinarily difficult and
demanding. If I can't ask you to modify your behavior, if you're
keeping me up at night.
I used to have one patient get up. He would go to bed at
7:00 p.m. so that by midnight, he'd pretty much had a night's
sleep and then he'd go out into the garage and play the drums.
So it's very much up to the caregiver to manipulate everything
around the patient in order to produce the type of result
that needs to be gotten. You know. How many rest periods
do I give a day? If he says this, how do I respond in a way
that's not going to be a battle?
Alzheimer's caregivers become very good at choosing battles
because you never know what's going to produce in essence an
explosion. For that matter, that's what makes the difference and
that's what makes the heroics. Most of us in this room, I would dare
say that everybody in this room, are people who really enjoy a good
puzzle and taking these complex concepts and untangling them. The idea
that the person you love most in the world can't do that anymore and
that you have to rethink everything you do with them in order to
produce a response that isn't going to be an explosion, it's
CHAIRMAN KASS: Could I piggyback just
briefly on the direction Bill was taking? I was going to
ask Tom Cole earlier when he was showing us that wonderful
iconography of the different views of the life cycle. It
didn't seem to me that any of those people in those pictures
of the staircase up and down that the people on the way down
looked more or less like they did at the top only a little
more wrinkled. It didn't seem to me that the period of decline
included something like this kind of devastation. Whether
it was known then or not, I doubt it. But it was a certain
graceful decline to the end and it had a nice shape where
this is a very different kind of end.
On the other hand, this is done in certain passages in
David Shenk's book and I wish I would remember them rightly in which,
and he's still here so he could correct, there's at least a suggestion
that although it's a particularly horrible disease and the rapid
disappearances of all aspects of identity and self and not just
cognition, but all of those things that you really listed for us, that
in some ways that really is an emblem of the ultimate loss of
everything. Part of the reason that we hate it so much is not because
it's gruesome but because it's a kind of compressed version of, forgive
me, the ultimate truth of the matter of human life.
So the question is whether this is some kind of bizarre
thing which if we erased it, we will find somewhere, we will return to
that curve in which we will go out gently as Rebecca was asking earlier
'What will you do once you get rid of this' or whether there are things
to be learned about who we are and the way we relate to those whom we
love who have this and in a way of relating to our own limitations. I
think that's partly Bill's question. As a person who has been in the
trenches, mostly in the retail business, but also here in the wholesale
business, it's quite clear.
What do you think about this? I mean is this really just
an aberration or is this somehow revelatory of things that all of us
really have to learn whether they are going to find the immunization
for amyloid or not?
DR. HALL: I don't know. It's a very interesting
question. It's the first time that I've really thought about it was
this morning. I don't know. Are we going to find that there's
something worse than Alzheimer's? It's kind of hard to imagine if we
do cure it. But it may be that Alzheimer's serves a purpose in society
in terms of helping us be better people or what have you, but it's a
real tough way to learn.
CHAIRMAN KASS: Yeah. Peter and on the same point, Gil, or
something else? Okay. Peter, will you hold or do you want in on this?
DR. LAWLER: No. A different issue.
CHAIRMAN KASS: Okay. Let Gil in on this same issue.
PROF. MEILAENDER: Just to clarify, you had said before
that, I guess not all the time, but often a person's worst traits come
out in the end and that would mean different traits, I guess, depending
on what the person was. That's interesting to me because to the degree
that that's true, that means you don't actually lose all aspects of
yourself. Different people will go differently into this.
If that's true, there is a certain kind of continuity. Now it
may be if I think about my worst traits that may not be a
pleasant thought. But it's interesting to me because it connects
with this larger question of identity and it may, in fact,
be that we come to that end stage differently because of
the different people we are and have been. Is that possible?
DR. HALL: We absolutely come to it differently. That's
what I meant when I said 'When you've known one person with Alzheimer's
you've known one person with Alzheimer's.? What happens early in the
disease is that you lose the ability to inhibit things that you
normally would have not said.
The most common example is the elderly person who has been
a church-going, devoted grandma all her life and suddenly learns to say
words that would make a sailor blush and the family comes to you and
says 'When did Grandma learn that word' and 'We've all known that
word. It's just she never used it in polite conversation before.' So
the person is not able to inhibit the more negative aspects. The parts
of your personality that you've been hiding are going to be right out
in front. So for those of you who are a Type A, you're going to be the
little elderly person in pink fuzzy slippers, but if you're me, you're
going to be driving and you're going to taking airline flights and
doing all kinds of things and the minute somebody tries to limit
someone like myself who is very autonomous you get fireworks.
PROF. MEILAENDER: Are there no cases or small
percentages of patients who go out sweetly? I'm thinking of the
patients with frontal lobe injuries that were known as being sort of
passive, but some of them were also sweet. I'm wondering if you see
that or if it's always the worse coming out.
DR. HALL: No, I have a lot of truly sweet patients. It's
just that those aren't the people where the family comes and says, 'I'm
tearing my hair out.'
PROF. MEILAENDER: But then it's always the worse.
DR. HALL: No, it's not always the worst. It's more likely
than not that a lot of the worst comes out though.
CHAIRMAN KASS: Last comment of this session belongs to
DR. LAWLER: Everything said in the last
few comments is what I wanted to say which amounts to this.
There is something strange about Alzheimer's because it's
such a truth telling disease. If you go to the doctor with
cancer, you are immediately given hope where this or that
aggressive treatment will cure you even if the chances are
fairly slim. Still you're given hope. It's not exactly a
lie but rarely is there absolute necessity connected with
cancer of 'Maybe if we try this, we can fight it off.'
But with Alzheimer's, you can say you come with many differences,
as we've talked about, but within the scope of the differences,
it's predictable. This is going to happen. So it's essentially
from a merely physical point of view rather hopeless. You
know you're going to die and something else might kill you,
but in terms of this disease, this is going to happen to you
and things are always going to get worse. There may be the
ware of good days, but in general you're going to be in this
decline. It's predictable. We can see it. You're going
to regress to what you were at the beginning.
And early you said this that when I describe this
objectively to the patient, I then give the patient hope. But you
didn't say what you said to give the patient hope. What do you say
DR. HALL: I give the patient hope that
first of all medical science is developing treatments. It
was only in 1997 in January that we got our first even marginalyl
effective medication. For many of us who are clinicians,
that has really changed the tenor of our practice. We're
seeing our patients earlier. We're able to do a lot of patient
education. We're able to tell them that we are going to be
I would suggest to you that the largest fear of Alzheimer's
Disease is abandonment whether it's abandonment of the patient
or abandonment of the caregiver by society, by healthcare
professionals, etc. If we reassure them that we will be with
them, that we will help them have access, the first question
that a caregiver is going to ask me is, "When is he or
she going to be violent. When you say, 'Well only a very
few patients become violent and if that's a problem we'll
deal with it,' they go, 'Okay, I can deal with that.' It's
eating the elephant one bite at a time. Could I make one
CHAIRMAN KASS: Please.
DR. HALL: One of the biggest problem we have though that
this Committee could probably address better than any other committee
is the issue of partial autonomy, the patient who is still able to
participate in some of the decisions that affect them deeply, but they
are not able to make those decisions entirely alone such as the patient
who needs help with managing finances or the patient who needs help
with transportation or placement issues.
At this writing, there is nowhere in the country where we
have anything like partial autonomy so that you either have decision
making capacity or you don't. And so many people get their rights
removed either very, very late in the game after terrible things have
happened or too early in the game which is a terrible thing for them.
That's a huge critical need.
CHAIRMAN KASS: Thank you very much. Thank you very much,
Dr. Hall, for a really wonderful discussion/presentation. Look, here's
where we are. I budgeted a half hour for us to talk amongst ourselves
in the light of what we've talked about today to see where in this
large area of dementia and the ethical and social issues at least what
we might think about taking up down the road to focus this a little
I'm not sure that everybody has this well formulated and we
need to do some digesting after this day, but I would at least like to
have some preliminary reactions and discussions. Let's take ten
minutes, but really make it ten minutes. I want us to be through at
4:15 p.m. so we can get over to the museum. Thank you. Off the
(Whereupon, the foregoing matter
went off the record at 3:37 p.m. and went back on the record
at 3:49 p.m.)
SESSION 4: AGING, DEMENTIA,
CHAIRMAN KASS: On the record. Could we get
started? With respect to the tour of the Deadly Medicine exhibit,
people have asked whether they can go on foot rather than
by cab. It is a short walk providing we know where we're
going. We are, I think, here at 13th and Pennsylvania, but
I don't know which door out is 13th Street. Which is—
Laura, you'll find us to the 14th Street exit. We'll walk
together. It's a short walk. Others will come by cab if
they like, but if we leave here at 4:15 p.m. we'll be there
well in advance of 5:00 p.m. and we can get some fresh air
if it's not raining.
Also before we start, I want to ask. Professor Binstock
and I were chatting briefly at the break about the questions of policy
affecting these matters. That question came up in the last session and
he had something very interesting that I think he would like to share
with the group.
DR. BINSTOCK: Last week, I was at a meeting of National
Academy of Science that was mostly attended by health economists in
which they were looking at the notion of establishing national health
accounts. Up to now, all they've been doing is national health
expenditures, from what source and how many services and so on. But
now they are looking at the idea of health status and what are the
inputs. What's particularly interesting is that they have a broad
notion of inputs which I think are very relevant to the Alzheimer's
situation which we've been discussing. So, for example, one of the
economists unusually declared that informal, unpaid caregiving should
be an input into national health accounts even though it's not a
traditional medical service and it's not being paid for in cold cash,
only in sweat and tears and so on.
And then on the other hand, I began to say "Wow",
and for the health status of caregivers, you could have a
lot of inputs such as respite programs, adult daycare programs,
caregivers support programs, all of which the Federal Government
is supporting in one way or another, well, not respite programs.
But in any event, now what that means is that down the line
some of these things may very well shape up as policy foci
for potential support if this development gets off the ground
and it would certainly hasten that sort of a thing. So I
just thought I'd let you know that there is something out
there. If anybody is interested in following up from the
staff, it's the DBASSE committee, D-B-A-S-S-E. I used to
know there was a CBASSE committee there. I don't know what
the D stands for. They have now graduated, but it's Behavioral
and Social Sciences and Education. I don't know what the
D stands for.
CHAIRMAN KASS: Thank you very much. This little session
at the end of the day is meant to be a preliminary taking stock of what
we've heard and where we might go next in this area. There have been a
couple of topics suggested to us by our guests of things worthy of our
attention including questions left by Professor Binstock himself at the
end about old age based healthcare rationing, questions about
aggressive medical treatment in patients who have Alzheimer's Disease.
Dr. Hall raised with us the question at the very end of her
remarks about exploring the category of partial autonomy, something in
between this binary condition of you think you are autonomous and
you're not and that seems to get in the way of all kinds of important
decisions. There are questions having to do with issues of health
coverage for certain sorts of matters. There are questions about the
limitations of the Health Information Patient Privacy Act that is an
obstacle to things like getting the caregivers the information that
they actually need to give proper care. These are particular topics on
which we could either invite further comment or do some writing.
There were also some of the questions raised implicitly
about truth telling or the question Michael Sandel raised earlier about
the moral status of this diminished—Put it the way you want to put
PROF. SANDEL: I wouldn't use the phrase 'moral
CHAIRMAN KASS: I know. Yes, if you hadn't correct
me, he would have. In any case, we have questions that we
can fish out of the transcript. As far as the Staff has thought
about this in advance, since from the quality of the people
you realize that there have been people out there thinking
about these topics for a long time that it's not for this
Committee to reinvent the wheel or to do a lot of staff writing
here. But one of the things that has occurred to us is that
we could on the basis of these discussions and your input
lift up to view some of the best things that have been thought
and that are being thought in the form of a series of commissioned
papers once we identify the topics and identify the people
for which we, Staff and Counsel could write suitable introductions,
suitable conclusions and make as a matter of much more visible
public attention some of the best thinking both about the
science, the clinical care, the life cycle questions and some
of the ethical issues that this group at least could identify
and invite other people to comment on.
But that's one possible thing that's occurred to us. I
know that there are people in the room who have spoken and who have
other things to say, but we are free to develop this topic as we would
like. It's clearly an important topic. The question is whether we can
do this in a way that would be of some use and some help to the
public. I just open for general comments or specific suggestions.
DR. CARSON: Well, in the first sessions in the morning, we
talked a little bit about aging and perhaps the shifting definitions of
who is old, etc. Obviously when we look at this compared to the last
turn of the century before this prior one, we were looking at an
average age of death in this country of 47. We're close to doubling
that now. At the rate we're going, we will probably add substantially
to the average life span. At some point, I think it might be a wise
thing to discuss the question of because we can prolong life to 200
should we do it and what are the implications for society for doing
CHAIRMAN KASS: Frank Fukuyama.
PROF. FUKUYAMA: Well, I have a purely ethical rather
than public policy issue that I think we should discuss which is what
are the obligations of the caregivers to the elderly under the current
technological circumstances because it seems to me everybody by nature
grows up understanding that they have obligations to take care of
dependent people at the beginning of life when they have children and
at the end of life when their parents get old. A lot of the pictures
that were displayed by Dr. Cole suggest that understanding of the
cycle. But it seems to me that modern biomedical technology has
greatly intervened to distort that cycle in a lot of ways.
It just seems to me from listening to the discussion of
what Alzheimer's is that in a way it's a clear byproduct of
all of the other cumulative advances in biomedicine an unintended
consequence. As I understand it from the presentation from
Dr. Selkoe, you have this polymorphism in this item that's
not a gene, but it's a protein that has obviously, well, it's
produced by a gene, a very positive impact in early stages
of life, but in later stages of life, it leads to the build-up
of these amyloids.
You can see how in evolutionary terms the former
characteristic was selected for, but most people in hunter-gathering
societies didn't live to the age where the negative effects could take
place and so there was never any evolutionary pressure to select
against that particular characteristic. Now we've managed to alter the
situation such that you have this extremely unnatural disease.
Now the question is I think everybody feels a little bit
guilty that we now ship our parents off to nursing homes rather than
doing what we would all like to do which is to care for them at home.
The question of obligation is a really complicated one because do you
have the same degree of obligation when you are facing basically a
terrible disease that no one has ever really had to face in human
history before where you have a ten year period of this very gradual,
very high level of dependence that requires especially in the later
years a much higher level of commitment.
Now previously when all of this was done in families, it
was also dependent on certain social structures that no longer
exist. Either you had very large kinship systems in which
you could have collective responsibility for the elderly.
Quite frankly, in traditional American society and this continues
to this day, a disproportionate obligation for caregiving
is on women and particularly if there's a family and there
are siblings, it's always the daughter that ends up spending
much more of her time doing this sort of thing. In a traditional
society, that worked because the women were not in the workforce
and basically they made the transition from taking care of
their children to taking care of either their parents or their
Obviously that doesn't work in present circumstances and so
what are the moral obligations for people' How guilty should we feel
for asking either that professionals take over this responsibility
privately-funded or to what extent is there actually a public
obligation to relief families because in fact this is a good case,
since it clearly has a genetic cause and it's not equally distributed
among the population, for the socialization of the costs and risks of
this disease which is a good case, I think, for a public intervention
to equalize outcomes.
CHAIRMAN KASS: Thank you. Peter.
DR. LAWLER: Just to add to what Frank said, it seems to me
the big issue lurking all day is the status of voluntary caregiving in
a highly individualistic, high tech society. What Professor Binstock
said this morning in effect is our health system would collapse. We
would all go broke if most of the caregiving wasn't done by the family
and in fact, most of the caregiving wasn't done by women.
The burden is greater. Alzheimer's just being one example.
The resources are going to be less in certain respects with
women working, with fewer children, more elderly people.
More people unless the cure is discovered are going to have
Alzheimer's and other debilitating diseases that aren't as
bad as Alzheimer's but plenty bad.
So it's not just an ethical issue, but it's a question of
what sort of support government should give to voluntary caregiving
especially since there's not only a necessity, but there are all kinds
of rewards as Paul talked about that is a large part of being human and
seeing the truth about things. Children should see people die even
long agonizing deaths. It's not as bad as clinical evidence would
suggest. So I share the nostalgia. I'm not old enough to have it, but
I share the nostalgic thought then.
So is it good for our economy, indispensable for our
economy and maybe indispensable for our souls to encourage not just in
the abstract ethical way, but it should be public policy encouraging
voluntary caregiving because from the point of view of justice, this
may point to socialization. But there is really a great loss there, so
maybe we ought to sacrifice a little justice in the name of love.
CHAIRMAN KASS: Michael and then Gil.
PROF. SANDEL: There's a lot that we've learn and that
we can learn from the kinds of presentations that we've heard and much
of it also that's very moving in a human way and there's a lot we could
discuss about various public policies to do with the healthcare system
and questions of resources which, for the most part, this group has not
taken up under the heading of bioethics though it certainly could fall
under that heading.
I'm not sure that we have a question here really that we
can contribute that we're well equipped to contribute to. So I hope
that we can have as an open question here in this discussion and later
whether this really is something where we can make a contribution.
I haven't been able to wrap my arms around any focused
ethical question that we could argue through and really make a
contribution on. Important though it is, informative though these
issues are and moving though it is, I don't think we want to be in a
position of issuing merely hortatory kinds of reports. We could delve
into the resource questions which are hugely important and vexing, but
unless that's what we want to do, a focused ethical question on this
topic so far I don't think has presented itself of the kind that we're
equipped to contribute to.
CHAIRMAN KASS: Someone want to join Michael or Gil.
PROF. MEILAENDER: Well, I want to propose a
focused ethical question. Does that constitute joining?
CHAIRMAN KASS: I suppose that's an answer.
PROF. MEILAENDER: I mean I've been thinking about this
for a while because I think in what we've done up until this meeting
and even more so, what we've done in this meeting, what we have is an
enormous amount of really rich fascinating material, but also a sense
that you're kind of going round and round and not quite sure where it
might go. I think there is a direction that we could take a little
piece of it and actually give it some focus and say something that I
myself believe would be useful to say.
Here's the way I would put it. I would start from the
issue of advanced directives that we looked a little bit at and if you
actually look at the history of it, the history of the development of
advanced directives a quarter century ago was mainly to move from a
perceived medical paternalism to a more autonomy based system where a
person's own decisions could take effect. What I think we could really
usefully do is question that movement and question whether a return to
a certain kind of understanding of best interests specifically now with
respect to aging, demented patients wouldn't in fact be an important
thing to do.
So that we could begin with the history. We could look
at the mounting evidence that the turn to advanced directives
has failed in fact. I think there's an awful lot of really
powerful evidence that it hasn't in fact worked. We could
take up some of the philosophical problems about identity
and continuing one's identity in the future that we talked
about last time without turning it into a philosophical paper
and then we could think about what it would mean particularly
with respect to this group of patients to think more seriously
about not just extending their autonomy into a period where
they don't have it anymore, but thinking in terms of their
best interest about participation by a whole range of people,
the caregivers, the patient while the patient has partial
autonomy, taking up that partial autonomy issue that came
up, some of the issues about who had to have information that
the HIPAA discussion raised and we could actually say something
that in a certain way redirected policy to a degree, redirected
it by paying attention to some very practical issues to some
larger philosophical questions and focused it on the particular
class of patients, namely the demented aging patients that
we've been talking about.
Now that would leave to the side a great deal of other
really rich stuff that has crossed our path along the way. It might be
that the kind of collection of essays that Leon was talking about done
in conjunction could as it were pick up some of that rich stuff, but it
would also give us a more focused project that seems to me to be within
the scope of our capabilities to do that relates to some of the things
we've talked about. So something like that is at least one idea for
how one might pull some of this stuff together and give it a focus.
CHAIRMAN KASS: Comment to Gil's suggestion
or other suggestions? Dan, did you want to speak to Gil's
DR. FOSTER: No, I'll wait.
CHAIRMAN KASS: Mary Ann, then Dan.
PROFESSOR GLENDON: Well this is in response
to Michael's question and further to what Gil said. It seems
to me that there is a value in making more visible much of
what has surfaced here today, not necessarily trying to answer
the questions or even make policy recommendations. But suppose
we ask the question 'What is likely to happen in the not-to-distant
future knowing all that we learned today if things just continue
the way they are continuing?' Is it fair to say, the experts
here could give us an opinion on this, that there is a crisis
looming because of the confluence of a number of circumstances,
the continually expanding population of dependent elderly
persons, many of whom have Alzheimer's but there are other
kinds of frail elderly with greater longevity. Where are
the caretakers to come from?
Paul evoked a time that some of us can remember when
caretaking took place in the home. That was a time when young adult
women were at home. That population of caretakers has disappeared.
Right now, what we have with Alzheimer's very often is a elderly person
taking care of another elderly person. So if you look at these
developments, the movement of women into the paid labor force, then the
expanding population of the frail elderly, the fact that there is
certain stigma as Bill so eloquently wrote in his essay long ago
attached to the condition of being dependent, that stigma also attaches
or at least a lack of recognition and reward attaches to people who
care for dependents and become dependent themselves in the process of
caring for dependents, I think it's a useful service and one with
ethical dimensions if we lift that up, make it visible and maybe
suggest that attention needs to paid to recognizing, rewarding and
CHAIRMAN KASS: Dan.
DR. FOSTER: I don't think I have anything very profound to
say, but what I'm worried about is something you've really hinted at.
I mean these issues that we've heard this morning by the very presence
of experts and large numbers of people who have addressed both
economically and in some sense make me worried about what the council
would have to say about that.
I'm sure because the Staff writes very well and then we
spend weeks and so forth editing these reports, the reports
have been usually pretty widely praised for their content,
but it would be hard for me to get really excited about simply
reviewing the evidence about the aging and about Alzheimer's
and so forth. I mean to write a philosophical report about
this which the literature is already filled with might bring
it up to the business, but I'm not sure that that's what we
are designed to do.
We started off with cloning— Most of the things that
we've done have been sort of certainly pressing problems.
We started off by cloning. We've talked about stem cells.
Even the 'Beyond Therapy' document had to do with questions
that are serious questions for the future that had not really
been addressed in the same way that anybody had done. I mean
we talked about some of them. Ben wasn't there at the time,
but at the time we did talk about making people live a long
So the question is in 'Beyond Therapy' — I mean 'What
it Means to be Human' background material was widely received.
So we can write good papers that a few people will read and
think that they are — And we'll probably get it in The
New York Times either pro or con or something like that.
But I just don't see anything at least so far to me that
grabs me to say this important that a national council — Remember we
were told at the start that a council is the highest advisory body to
the Federal Government. It's not a commission. I mean it's not a
committee to do it. It should address things of high interest and
there was a national interest and there's a continuing national
interest about the issues that we started off with. That is the two
goods that we talked about, a calling for research and so forth.
Even our last document was of an important issue which we
were unanimous on because it at least gave some guidelines to maybe
breaking the deadlock in the Congress about what to do about more cell
lines and so forth. You remember that we'd ignored the whole issue of
cloning for research at that point.
In one sense, I mean colleagues would say — I've had
several people ask me and I've mentioned this. Leon, I said
I wasn't going to say anything about this, but not for any
decisions here, but a lot of people say 'Well given the things
that have happened in the country, the Reagan death, the Sapphire
article about Reagan's legacy, about additional lines and
things of that sort, when is the council going to look at
these issues again? Everybody else in the country is talking
about it and there is an absolute silence from the Council
on Bioethics about it. That may be valid.
We've made our decision as to what we do, but things do
change. You have 51 Senators who are saying we ought to get more lines
and so forth. I'm not addressing it all, somatic nuclear transfer. I
don't think — So I just don't find myself excited about the sort of
things that have been suggested here when we have such a vast amount of
material. If you want to do what Janet raised about the distribution
of resources for medical care relative to the aging or to the
non-aging, that might be something to do. But I would hope that we
would come to a question that would make you want to come to Washington
to spend a day and a half and address your time on that is at a level
of ethical content that might be considered major rather than an
ethical question which many people might think was minor and I think we
ought to address the — I would hope that if we're going to do
something in this, we ought to —
Now there are a lot of other things that we could talk
about that I think might be more major but I'm not going to go into
those things. That's my concern. I'm not really excited about
anything I've heard so far that would be at the level that I would
think that a national council should address itself to. I think that
National Academy of Sciences or the Institute of Medicine could address
these issues because they're not in some fundamental sense major
ethical problems I think, but maybe I'm wrong on that.
CHAIRMAN KASS: Charles, Rebecca and we'll stop.
DR. KRAUTHAMMER: I was saying to Mike Gazzaniga during the
break that what was refreshing about today is we've gone a whole day
without talking about embryos, but I spoke too soon.
DR. FOSTER: Forgive me, Charles.
DR. KRAUTHAMMER: Well, you set me up for that one. I
would stay away from discussing the economics. It is the huge issue.
It is the looming issue, but it's a political issue and I think that
the people on the Hill are much more equipped and they have politics as
the authorization allocation of the resource. I think I would leave
that to the politicians. It is an important issue. I'm just not sure
I had exactly the same line of thought as Gil. What intrigued
me and I don't know that it rises to the level of national
crisis. It doesn't, but the most interesting issue I think
is the issue of autonomy. It is related exactly as Gil had
said to the earlier discussion we had on advanced directives.
It seems to me in Alzheimer's you have a gradual loss of autonomy
and in advanced directives we're often talking about a sudden
accidental, catastrophic loss of autonomy and what do you
I think it's an interesting issue. I don't know that it's
been dealt with at this level and I think we might contribute
something. I was interested that our last speaker who's been involved
with Alzheimer's for 20 years make a plea at the end for us to look at
this issue of the binary on-off, yes-no, autonomy status that we now
have legally. I think that if we thought about this, it's a much
broader issue. I think it would open up other areas. But I think it
would be interesting. It would be focused and it would not be cosmic,
but it would be worth our while to do.
DR. FOSTER: Can I just respond to that? We've
been using the public language of autonomy and doing no harm
and justice and benevolence for a very long time. It's the
public language of bioethics. The thing with autonomy began
with the National Commission. It seems to me that autonomy
may be this is so different from other aspects of autonomy
but whenever autonomy is impaired we have a responsibility
to meet it. I don't see why you're excited about doing something
To tell you the truth, I'm actually — I've read so
many papers on autonomy that I think that where we are now
that it's sort of boring. All we've done, let's say, is change
from taking care of somebody with Down's Syndrome or something
to somebody who is at the end where they have multi-infarct
dementia or Alzheimer's dementia. What is the difference
between an impaired autonomy at one stage or another or one
disease or another disease to do it? I mean why would that
DR. KRAUTHAMMER: I don't think it has to be
Alzheimer's specific. I mean when you talk about advanced
directives it's not Alzheimer's specific. I think what we
did hear in the discussion of advanced directives is that
the system that we thought was a solution in the hay-day of
autonomy 30 years ago and everybody assumed in all aspects
of life, marriage and divorce and sexuality, that autonomy
is the answer, we've been rethinking autonomy in a lot of
areas of life and seeing its unintended consequences. This
would be an interesting area to look at it again.
Again I'm not making a claim that it's going to
revolutionize our thinking, but I think it has practical implications.
People are telling us the system that we had devised is not really
working. We might have something to offer as a practical alternative.
CHAIRMAN KASS: Rebecca.
PROF. DRESSER: See I have exactly the opposite view
from Dan as far as what's important for a Bioethics council to take up
and I think this is a problem with the field. We get caught up in
these sexy topics like cloning and stem cell research and I think they
are very important because they are new issues and somebody needs to
think them through, but there are all these everyday ethics issues that
really affect people so much and we have a lot of writing on autonomy,
but a lot of it is not very good.
I guess I would maybe think about a project that's a little
bit bigger than what Gil said under a rubric of something like what is
aging and death with dignity in the 21st century, develop countries. I
don't know if we want to take on developing as well, but I think that's
a huge ethical challenge. I don't know about you all, but I was
sitting here all day thinking about myself, my family. It's something
that most people are going to cope with. I, as a member of the
Narcissistic Baby Boom Generation, think we're all going to think it's
extremely important and people are really going to be grappling with
There isn't a lot of buy-in to the traditional spiritual
institutions that guide us through these things and I think this will
be a social crisis as well as a kind of an existential crisis over the
next 15, 20 years how to deal with these things. So I would really
hope that we could take this up.
PROF. SANDEL: Could I ask Rebecca. What
is the 'this'? You raised actually a more interesting topic
to my mind than autonomy. Death. Death is an interesting
topic. Autonomy by now has been so chewed over. Autonomy
is dull. Death is interesting. So when you say, 'Yes, I
agree we should do this.' What's the 'this'? You started
out saying I agree, but then you gave a very different thing.
So what's the 'this' exactly?
PROF. DRESSER: This is death with dignity,
if we want to call it that. Thinking about it from a broader
perspective acknowledging that autonomy is not going to give
us the answers and how we do approach it with a better way
of thinking. I'm not sure what it is, but I would love to
hear what people like you think about it. So I guess I would
say in terms of thinking about our futures as aging people,
as people who will need a lot of healthcare, as people who
will have relatives who need a lot of healthcare, how do we
approach this journey? What's, I don't want to say a health
way of thinking about it, a rich, moral way of thinking about
DR. FOSTER: Well, let me just say, so
you want us to go back to ancient questions of what does it
mean to die that everybody from the prophets of Israel to
every seminary to everybody else has addressed over and over.
So we're going to come together as a council and we're going
to say how you die. What is your hope for death and whatever?
That's going to become a subject. I mean I don't follow you.
I really don't follow you as to what you think we were going
to do here. Now I'm pressing pretty hard, but I think like
Michael. You'd better be specific. Are we going to say 'Well,
what do the polytheists think about death? What are we going
to do? I mean what do you mean by death by dignity. I just
want to push you to that.
CHAIRMAN KASS: Gil, do you want a tiny
comment while Rebecca thinks about that?
PROF. MEILAENDER: Yes, just a sentence. I just want
to reemphasize that my notion was not that we should take up the
concept of autonomy. My notion was that we should say that what has
become our public language turns out to be bad public language and we
should think about different public language. That seems to me to be a
rather useful interesting thing to do.
DR. KRAUTHAMMER: I think autonomy is one
way to answer the question and the question is who decides.
As people lose their capacity to make decisions, who decides
and how do you establish structures that do that with regularity
and with justice? I think that's an interesting question.
There are a lot of people who— And it comes up in several
contexts. Autonomy is one of the ways of approaching it.
I think Gil tends to be skeptical about it. I may be more
of a libertarian but those are different answers, but the
question I think is interesting and I don't think it has a
very good practical answer today and we might look at it.
CHAIRMAN KASS: Well, we're going to have to stop. Let me
say one sentence or two. I share the view that the Council's work
together has to be on something sufficiently focused, sufficiently
clear and sufficiently deserving of your energies and time to bring you
together here to make it worthwhile. There is no argument about that.
The last time we started on more specific topics, at least
the question of advanced directives was on a particular topic
whether this is indeed the way to enable people contemplating
their future to this is the best way to set up the care for
the people who are aging and dying to allow them to somehow
govern this with a piece of paper written 20, 30 years in
advance. Jim Wilson who couldn't be here actually set himself
the task of reading all of the literature on advanced directives
and he said he thought it was largely bankrupt. He really
didn't think that that was somehow going to be adequate to
the task that we had. Durable power of attorney was somehow
better but that he was really at work on this topic. And
I do think that we will work to try to organize and focus
some kind of question that is a question that is researchable
and is manageable for us. If we can't, we won't do this.
Having said that, I do want to put in one kind of a plea for the
larger view of this, not that we were going to have a staff
written report of the sort that we had before. But I fear
that as this conversation proceeds with an aging population
and with a increasingly demented population that this will
be handled in one or another of the usual bureaucratic ways.
That there will either be simply a economic and demographic
approach to this matter or there will be simply another kind
of biologized view of what you have to do to somehow move
in there and alleviate these symptoms.
Whereas I think Tom Cole gave us in a way what he took to
be the most important question of this particular age where there is no
longer a circle and there's no longer even a view of a sequential and
graded scale of what actually does it mean to be old and to be infirm.
Now that's not a question of burning public policy, but if we were to
pull commission papers, commission papers drawing on things that people
know, there is at least a way that a richer bioethical approach to
those questions could be put between two covers so that insofar as
that conversation proceeds using the things that the experts already
know, we might have not only lifted the matters to view, but given it a
certain kind of richer, deeper and more humanistic shape so that it
simply doesn't become yet one more problem for managers or deniers of
one sort or another.
Now that would not be writing a report that's already been
done. It would be a matter, if we go forward with such a
thing, of thinking through what are the specific large questions
of present policy or present thought that deserve a voice
in this discussion. But that would be not a substitute for
finding a focused question for us to tackle here. I do think
that it's incumbent upon the Staff and myself with your help
to try to formulate such a question or else go somewhere else.
The reason we had the conversation we had today was to give
us a kind of larger background for seeing where the particular pieces
might fit. We started rather small last time. We've now painted a
larger picture and I think we take for ourselves the task. Bill will
be one of our major consultants and in trying to think this through we
will consult with you over the weeks ahead and try to formulate
We go now to the museum. Someone will show us the 14th
Street exit for those of us who would like to walk. Dinner is at 7:00
p.m. at 1201 Pennsylvania Avenue for those who are not going to the
museum. We will be here if people would like to leave their things at
their places. And tomorrow morning for those of you not joining us, we
start at 8:30 a.m. Off the record.
(Whereupon, at 4:31 p.m., the meeting
of the Council on Bioethics was concluded.)