THURSDAY, September 8, 2005
Session 2: Ethical Caregiving in
Our Aging Society II: Caregiving Perspectives
Greg A. Sachs, M.D., Chief, Section of Geriatrics,
University of Chicago
Peter V. Rabins, M.D., M.P.H., Co-director Division of Geriatric
Psychiatry and Neuropsychiatry, The Johns Hopkins University School of Medicine
CHAIRMAN KASS: On the record. This is our second session
entitled "Ethical Caregiving in Our Aging Society: Caregiving
Perspective." In this session and the next, we've invited
practitioners and students of caregiving to help us think about
two general matters: first, how our work to-date relating to the
actual activities of caregivings, caregiving for persons with dementia,
this session, and second, to the public policy aspects of the subject
of giving care for the elderly and the frail, the subject this afternoon.
All four of these guests have received the recent draft chapters
of our report for review. They're not primarily to be commenting
on the report. What they've been asked to do is to draw on their
own experience, a current research, their own or others, to identify
key areas that needed attention and/or reform. They've been
invited to suggest ways that what we have done in our work to-date
might relate to ongoing activities and practices, might be brought
into relation to those ongoing activities and practices or could
be developed further fruitfully in future work.
To speak from both clinical and research caregiving perspectives,
we're very fortunate in this session to have with us two people
who are long immersed in the care of the elderly and care of persons
with dementia. Both have been also keenly interested and active
in the development of ethical standards and teaching in this area.
Dr. Greg Sachs is the Chief of the Section of Geriatrics and Professor
of Medicine at the University of Chicago, also Co-Director for the
Center of Comprehensive Care and Research on Memory Disorders.
He's been a member and past Chair of the Ethics Committee of
the American Geriatrics Society. He's now still a member.
He's also on the Ethics Advisory Panel of the National Alzheimer's
Association and 25 years ago this fall, he reminds me, he was in
a class of mine on Science and Society at the University of Chicago.
Second, Dr. Peter Rabins who is the Co-Director of the Division
of Geriatric and Neuropsychiatry in the Department of Psychiatry
at Johns Hopkins, Principal Investigator of an NIMDS grant to assess
Care Decisions in Late Stage Dementia, co-author of "36 Hour
Day," a book called Getting Old Without Getting Anxious
and a guidebook Practical Dementia Care. Dr. Rabins has
taken special pains to get here from a meeting where they were in
fact working on the revision, if I understand, of a text in this
area. And if you'll forgive me for mentioning this to the group,
we'd like to wish you a Happy Birthday.
Thank you both for being here. We'll start with Dr. Sachs
and then Dr. Rabins.
DR. SACHS: Thank you very much. It's really a privilege
to be able to speak with you and I want to thank you for that and
also for your attention to this subject which is very near and dear
to my heart.
Just an outline of my remarks, I'm going to start with a case
because I'm a clinician and also because I think it's very
important to bring us back to the clinical realities in which these
decisions are made. And then my remarks will cover the major chapters
within the draft report though not commenting in any detail on the
The main points that I'll make to start with some of my conclusions
are what you call the "Mass Geriatrics Society" or what
those of us in the field call the "Demographic Imperative"
is very real. In fact, it may be even more scary than people are
currently projecting and we shouldn't be counting on cures or major
advances in treatment to change our preparing for the potential
Second, the section on advanced directives, I think that these
clearly are not exclusive for the problem of providing good end-of-life
care for people with advanced dementia, but they can be part of
a solution for some people and so should not discarded.
Third, on the issue of ethics in caregiving especially when it
comes to end-of-life care that dementia matters a great deal, that
it is not just a part of aging but it is something special and different
and is both clinically and morally relevant.
In particular, I think I'd like to emphasize that I am less
worried about the advancing number of people and smaller numbers
of caregivers about what may happen in terms of undervaluing and
undertreating people and much more worried about the propensity
to over treat, to not provide good end-of-life care, and in fact,
to have a healthcare system that is particularly ill-suited for
the ongoing care of people with dementia.
And finally, I'll conclude with some comments in which I think
that it's very important for this Council to be trying to focus
on these issues about chronic care, chronic disease and end-of-life
issues because I think many other bodies in the field have already
started to move towards focusing more and more so on issues around
cure and prevention of even things like Alzheimer's Disease.
So to start with my case, this was a 69-year-old woman who had
been living with advanced dementia in a nursing home for two years.
At the point at which I'm commenting, she was unable to recognize
family, only able to speak a few intelligible words and had had
multiple hospitalizations for things like pneumonia. Her agitation
and other problematic behavior has caused her to be restrained or
sedated on a regular basis. She died in that nursing home in that
state restrained with no particular palliative care efforts in place
and with no family around her.
So what's notable about that case is first of all it occurred
more than 20 years ago. Sadly, that's the way that many people
still die today with advanced dementia. Because it occurred 20
years ago, she was not tube fed. I guarantee you in most situations
today in most nursing homes that would have become a real issue
and there would have been a lot of pressure to put in feeding tube.
She was younger than most patients with Alzheimer's Disease
and finally, that patient was my maternal grandmother.
So I bring it up to also say something about my motivations both
in terms of improving end-of-life care and wishing that we had effective
treatments because of my increased risk of having this disease.
And also because of having already fielded my mother's advanced
directive of wanting me to shoot her if she should end up like her
mother which I told her that since I was already on record of being
against physician-assisted suicide and voluntary active euthanasia
that I couldn't carry that out.
My other disclaimers, one is that I have a nine-year-old son who
has some development disabilities and so I have an intense personal
interest as well as an professional one in looking at these issues
of how we value quality of life and taking great care not to project
what we see as value and quality and make decisions based solely
on those. And you've already made my final disclaimer about
our connection from 25 years ago and let other people draw their
conclusions as to whether or not that's important.
So to the demographic comparative, the numbers are very real and
we really should be scared by them. I'm not somebody who in
general is interested in apocalyptic tales but the numbers even
if you take the most conservative sorts of estimates are very scary
in terms of the numbers of people who have dementia and there's
a growing body of research looking at things like cancer survivors
and their increased risk of dementia, survivors of coronary bypass
surgery and their increased risk of dementia as well as the sort
of epidemic of obesity and how that is linked to hypertension, high
cholesterol, diabetes and all of those risk factors perhaps being
risk factors for dementia as well. So in a sense, there are many
things that we're doing either because of life style or because
of other medical treatment that may actually swell the numbers of
people with dementia even further.
Very quickly, I wouldn't count on cures. We don't have
very many of them, even the ones that were alluded to earlier today,
either cures are of very effective treatments whether it's HIV
or polio. We have done pretty well when it comes to infectious
diseases. We don't do well when it comes to late-onset, multifactorial
diseases. I think Alzheimer's Disease and other dementias are
going to be the kinds of things that aren't going to have a
I think also that the notion out there that if we could just delay
the onset of dementia by a few years that somehow that would solve
many of these problems that people would reliably die a few years
later without getting dementia is really a hope and there's
really little evidence to suspect that that will be true. That
in fact, in addition to the nine different medicines we now use
for congestive heart disease, we have things like Medicare now will
pay for implantable cardiac defibrillator in advanced congestive
heart failure. So it's even more likely, I think, that somebody
who gets advanced dementia will have other kinds of supportive care
that will keep them alive longer rather than allowing them to die
quickly whether it's from that arrhythmia or the pneumonia,
the friend of an old man.
So that's the tidal wave of people with dementia and our preparedness.
You've already talked and written about long-term care and the
inadequacies of the numbers of caregivers. But to flesh that out
a little bit, surveys still suggest that perhaps as many as one-third
of older patients say that they would prefer to die rather than
being in a nursing home and that's even though we've made
considerable leaps in care in the last 15 years.
The turnover in nursing homes of those people who made a little
bit more than minimum wage, the certified nurses' assistants
in many facilities, is 90 percent or greater per year. So it's
not like they have a stable body of employees where we can do quality
improvement and education and expect to make really big differences.
And we really aren't doing things that I think, whether it's
because of specialization or research or some of the incentives
within Medicare and other places where we are not supporting comprehensive
care, geriatric-type approaches, and in fact in many ways, there
are disincentives. When I started off as the Chief of Geriatrics,
our hospital counted on each of our patients providing a net $3,000
profit to their bottomline.
They now think of Medicare the way they used to think of Medicaid
that at best they break even or they lose money. They are not interested
in expanding the practice or hiring more geriatricians. That's
the way that we value things in American medicine is by paying for
it. We're not paying for the kind of care that we think we
want to get at the end of life.
So, to advanced directives now: For many practical reasons as
well as the conceptual ones that you cover very well in the report,
I would agree that they are not the answer as any sort of simple
solution to a complex problem would fail. But I think it is important
to point out that they can be a partial answer for some people.
So for the few who have them who have given it some thought in
making an advanced directive as part of a more comprehensive planning
process with their family and with their physician, they can be
helpful. It may not be that they'll be instrumental in making
individual decisions, but it will help the entire decision making
process along the line.
And we should take advantage of the fact that all states have
them. Most states do have laws in place of decision making for
families in the absence of advanced directives. And most importantly
for patients with dementia, family caregivers make decisions for
many years for them anyway, whether it's for where they live,
what they get to do during the day, the medications they take and
I think it's a little bit unfair in a sense to all of a sudden
cast a really harsh glance at how they would be making decisions
when it comes to end-of-life care.
I've always been amazed at the kind of care that the families
of my patients provide often for the best interests of the patient,
often at great cost to themselves, often under great duress. So
I think there still is a value to using them where people have them
but we should not be pushing them as a solution to this area.
Turning now to the larger portion about ethical caregiving and
focusing in particular on end-of-life care, I first want to do a
little bit of correcting what I think is a caricature out there
of Alzheimer's Disease or dementia in a sense where it may be
portrayed really as a memory disorder only and that one in which
people are aware when they start to get the illness, have anxiety
or depression and then sort of fade away over years, perhaps even
In truth, dementia is something that affects multiple cognitive
domains. Often individuals who are affected are unaware of the
process and do not have insight into it which creates its own complications
when you're trying to negotiate a care plan. It's frequently
accompanied by psychiatric symptoms and I know you're going
to mention many of those including things like delusions, other
kinds of psychotic behavior, anxiety and depression. In many of
those symptoms, the things that actually cause suffering for our
patients with dementia really have very limited treatments available.
I think that's actually an area where we need to be focusing
research and care.
Many kinds of dementia whether it's dementia with Lewy Bodies
or multi-infarc dementia do have physical symptoms where patients
will get them as the diseases progress. Furthermore, people with
dementia actually live for a lot shorter period of time than what
was once thought.
Even though I planned on not having any visual aids, this one
graph that was just passed out is based on the work Eric Larson
and colleagues in Seattle looking at the impact of Alzheimer's
Disease on remaining life expectancy and you can see for the middle
group, which is people of average health, if you take a 70-year-old
man, the average person would live about 12 years. The average
Alzheimer's patient at age 70 will live only about four years.
In fact, Alzheimer's Disease by itself has more an impact on
a life expectancy than most other chronic illnesses that would put
somebody in the lower quartile of health.
Furthermore, if you start looking at other kinds of prognostic
indications including nursing home residents, severe psychiatric
symptoms and hospitalization, you can start to come up with a prognosis
for some groups of patients such as Susan Mitchell showed in the
nursing home who may have a 70 percent six-month mortality. So
hearkening back (at least I learned something in college) that nasty,
short and brutish may actually be more applicable to the life of
somebody with dementia.
To flesh that out a little bit with even just in the last two
weeks while I was thinking about what I might say here, the kinds
of patients that I've seen have included a gentleman who is
just being diagnosed with Alzheimer's Disease but already his
wife was dealing with the fact that he was delusional, thought that
she had caused Alzheimer's Disease in his family and he had
been threatening her with a knife. Another patient with more advanced
disease who had been hospitalized for an ankle fracture, a blood
clot, dehydration on three separate occasions was returning home
to having care from a sister who is unable to care for her and essentially
three days a week help when she really needed 24 hour care.
Another patient who came to clinic with dementia and congestive
heart failure telling me that she was short of breath but her daughter
who was estranged from her because of abuse from a stepfather did
not accompany her to clinic. So I had no way of knowing whether
or not she was taking her medication and whether or not her symptoms
as she reported them to me in clinic were reliable.
Another patient with an altercation about telling him that he
wouldn't be able to drive because we have very limited options
in many areas over what they can do in place of that. Another patient
with a son struggling to keep his mother home alone but needing
to come over in the middle of the night to assure her that there
was nobody trying to break in needing to do things like checking
under her bed.
Another call from a hospice nurse about a patient with advanced
dementia and having a discussion about why we were not going to
use antibodies. In this case, there was no metastatic cancer or
severe pain but a patient with this limited life expectancy that
foregoing antibodies would be appropriate.
So I think, as I point out, these are many of the concerns as
we're approaching the end of life and the paper that I submitted
in advance from the Journal of General Internal Medicine
really goes into more detail about some of the ways in which providing
end-of-life care to people with dementia is particularly challenging.
I think it is very clear that people with dementia suffer more
than many other patients in part because it's more difficult
to tell when they are having pain. We do a very poor job of assessing
it. They're more at risk of having treatments of either no
benefit or unclear benefit including tube feeding which is something
where there's actually pretty substantial literature that we
haven't been able to prove that it's very helpful in a very
I think the other thing to emphasize from that paper was talking
about some of the system issues that really need to be addressed
because I think if you try and address the clinic individual decision
making without dealing with the system issue, it's not going
to go very far. Then we clearly have some misaligned incentives
when we start talking about people with advanced dementia who are
dying in the nursing home.
The sort of situation that I have in mind is where the nursing
home, when the patient is suffering more and they have a pneumonia
and is getting close to dying, they are having to provide more care.
It costs them more but they are not reimbursed more. Depending
on where they are and if the patient is on Medicaid, if they send
the patient to the hospital they can actually be paid a bed-hold
and they are actually making money while the patient is in the hospital
rather than losing money from having to provide additional care.
The physician instead of being paid at a lower rate and doing less
frequent visits hospitalizes the patient and makes more money by
seeing the patient on a daily basis and gets reimbursed at a higher
The hospital will make money because the patient is liable to
get out shorter than DRG for something like a pneumonia. All the
financial incentives are aligned for this patient to be transferred
to the hospital rather than being cared for in the nursing home
and being allowed to die peacefully.
In many of these situations coming back to the way in which the
report has framed things about the best care for patients who are
nearing the end of life with dementia, it really should not be conceived
of as the most care or the most treatment or the most medical treatment.
In fact, the best care for somebody who is dying with dementia is
like for most people who are nearing the end of life should be comfort
and company. That doesn't mean the defibrillator, antibodies,
stem cells or many other things.
In turning finally to some of the issues that I alluded to at
the beginning about where our society seems to be placing its emphasis,
there are ways in which I think whether it's in research or
in advocacy or the media that we've been turning away just in
the last few years from the needs of people with advanced dementia.
When you were talking earlier about the research agenda, we can
look at things like a $60 million NIA initiative on brain imaging
that's focusing on distinguishing aging, minor cognitive impairment
and early Alzheimer's Disease.
In contrast, a recent review by AHRQ found that there was really
no substantial evidence base for the palliative care treatment for
patients with dementia. Two major reviews about the treatment of
pain in patients with dementia said essentially the same thing.
We don't have the data.
We have a recent study using a drug for Alzheimer's Disease
and minor cognitive impairment which is thought to be the forerunner
of Alzheimer's Disease and it temporarily delayed the conversion
from minor cognitive impairment to Alzheimer's Disease without
affecting the eventual outcome. The same numbers of people got
Alzheimer's over three years.
There are going to be people who are going to be pushing for drugs
to be approved for treating minor cognitive impairment. It's
been estimated that this is $15 billion marketplace for the drug
companies. On the other hand when we were talking about the symptoms
of people with advanced dementia, we now have a warning from the
FDA basically pointing out that for all the drugs that we use to
treat psychotic symptoms in patients with dementia, they are essentially
not approved and now there's accumulating evidence that there
may actually be increased risk of death from these drugs. But we
have no substitutes. People are not exactly flocking to that market.
In the media, we have an autopsy study of 37 patients with minor
cognitive impairment that became front page news in the Chicago
Tribune which then went on to talk again about cures and about
the need for increased research. At the same time, we see little
attention to the potential impact of Medicaid cuts on nursing home
care for patients with Alzheimer's Disease.
Even though I'm very much aligned with the Alzheimer's
Association in many regards, one can even look there at the main
advocacy organization for this patient and caregiver population.
The old logo for the Alzheimer's Association was essentially
two people standing side by side and the slogan is "Someone
to stand by you." Now that may not be very catchy or raise
a lot of money but it was a lot about what the ethos of the organization
The new logo, I think, and maybe you know more than I do, Peter,
looks like to stylized connecting neurons and the new slogans included
things like "Our vision, a world without Alzheimer's."
They have a new program that's featured prominently on their
website entitled "Healthy Brain Aging" named "Maintain
Your Brain" and there was a recent conference on prevention
So I think the focus in many of these different areas in public
policy have really shifted to the well elderly, the people who have
mild memory impairment and things about prevention and cure and
we're getting precious little attention to the people that I
care for and care about. I think that anything that the Council
can do to refocus the public discourse and policy debate on these
issues would be really important.
On one hand, I think we need to avoid the extreme that people
are talking about in terms ending up with people who get all kinds
of treatment just because it's available, effective, perhaps
not burdensome, I doubt it won't be expensive, and the other
extreme of denying aging, death and dementia. I think that there
is a middle ground that we can be aiming for, both in terms of viewing
aging and dementia and end of life, of a place where comfort and
company should be the priority, and where we're guaranteeing
basic needs for patients with dementia rather than guaranteeing
them access to an ICU bed.
I think later on I would be happy to talk about some of the other
kinds of specifics that I think are very policy-oriented where we
can get away from some of the disincentives for end-of-life care
and realigning them towards matching up but would be financially
correct with what would be best for our patients.
I think that needs to be done and it needs to be done together
because I don't think you can rely on the virtue of families
and physicians indefinitely. We need to align the incentives and
the system to be able to make it happen more readily rather than
to make it an exception. Thank you.
CHAIRMAN KASS: Thank you very much Our usual custom when
we have two speakers is to allow a few minutes for questions of
clarification, not for full discussion. So we'll save the full
discussion of the two papers together, but questions of information
or clarification from Greg Sachs.
PROF. GEORGE: Leon, could I just ask the doctor to say
just a word more about that very interesting shift that you talked
about near the end which was exemplified by the change in the logo
and the slogan for the patient's advocacy organization. Can
you tell us what's going on behind that? What's the politics
DR. SACHS: I can tell you what I surmise.
PROF. GEORGE: Yes please.
DR. SACHS: Because I haven't been part of those conversations.
From talking to a communications company that was actually consulting
for the American Geriatric Society, they picked the Alzheimer's
Association as a successful case example for us to look at.
In fact, by doing that, the shift in the image was one of more
hope. Rather than someone to stand by you and sort of the solidarity
with people who are suffering, it was to raise more hope in the
minds of the public so as a more positive image. It actually has
translated into greater donations from the public, more engagement
of people as members of the Alzheimer's Association and has
actually allowed them to command greater leverage, I think, in the
marketplace in terms of the kinds of things they can do with the
other kinds of companies.
When I say at cocktail parties, "What do you do?" "Death
and dementia," people run away. So it's the same sort
of thing that, I think, the idea of having much more hope and some
of it is real in terms of the prospects for more effective therapies
is what's driving that. But I think it also has been one in
which people really don't want to have the image of the end-stage
patient, the patient where you're dealing with nursing homes
and a lot of those issues be the sort of thing that is out there
for the public.
PROF. GEORGE: Especially in view of your suggestion that
the Council might be able to do something helpful here, I gather
that you think that it comes with some serious baggage and creates
problems for the kinds of people, as you say, that you care for
and care about. Can you just say another brief word about how this
has impacted negatively your patients?
DR. SACHS: Sure. I think that when you look at the kinds
of treatments that we have available or even the things that are
in the offing, the amount of benefit that we get from drugs that
are available for Alzheimer's Disease for example are really
modest at best. So the kinds of hope though, the hype, that`s come
with that, has been one in which people really are expecting medicine
to make a really dramatic difference.
They expect, I've even had people ask about things like stem
cells which are pretty far off in terms of actually treatment, I
would say, for Alzheimer's Disease. I think it's falsely
raised the hopes of many patients and especially of many families
who often get very desperate when they're facing this sort of
picture of decline so that they may grasp at straws. I think it
makes it harder for people to even see Alzheimer's Disease as
something that's a terminal illness that is eventually fatal,
something for which a palliative care approach would be appropriate.
PROF. GEORGE: Thank you.
CHAIRMAN KASS: Dr. Rabins please.
DR. RABINS: First, I would like to thank the Council both
for inviting me here and also for focusing on this topic. I've
been interested in this for a long time and I think it's an
issue that has been unappreciated and your focusing on it, I hope,
will get people to think more about it in a thoughtful way.
I put my slides together before I had a chance to review the draft
and it turns out that in fact some of what I was going to say you
already know. So I will be able to go through it quickly.
But what I actually wanted to do first was to touch on a few of
the definitional and epidemiologic issues from a caregiver's
point of view rather than societal, second, talk a little bit about
caregiving and the emotional impact that it has on the caregivers,
and then finally, to talk a bit about my views on some of the ethical
issues, particularly some that I think are not addressed directly
in the report and I hope that you would able to perhaps pay a bit
more attention to it.
This is in a sense my disclosure statement. Obviously people
bring values to any topic like this and I just thought I should
say that these are a few of the things that are important to me
and have shaped my views on what I'll be presenting here today.
Again, as everyone knows, dementia, we're talking about adult
onset of multiple cognitive impairments in individuals who are normally
alert. I want to again repeat what Greg said and that is that
people still think of these diseases as primarily memory disorders
and in fact I think the irony here is that people who have memory
problems don't come to attention. I'll show you that in
a minute. So this second criterion I think is crucial and that
is that ultimately all the cognitive functions are affected and
it's usually the non-memory impairments that bring people to
attention and raise, I think, many of the particular difficulties.
Again, Alzheimer's Disease probably accounts for more than
70 percent of cases altogether because about half of people with
vascular dementia also have Alzheimer changes in their brain and
about half of people with Parkinson's dementia have Alzheimer's
Disease in their brain. But I do think it's worth pointing
out that each of these different illnesses, and these are the four
most common neuro-degenerative diseases, have different symptom
patterns and again, it's the non-memory symptoms that are often
For example in fronto-temporal dementia which only affects about
five percent of cases overall, the presenting symptoms very often
are changes in personality, behavior and social comportment. Intriguingly,
these individuals often have relatively normal memory. But a family
member trying to care for someone who at age 60 starts hitchhiking
for the first time, starts picking up children in a mall, total
strangers and then gets arrested, you can imagine the impact that
those kinds of behavior changes have without significant impairment
in memory. So I just think it's important to say that diagnosis
does make a difference even when we can't cure them.
Again, you know the symptoms of Alzheimer's Disease. What
I did want to emphasize again was that by definition every patient
with Alzheimer's Disease has a memory impairment. In addition,
they also need to have other problems in what's called praxis.
That is doing everyday activities and that means things like dressing
yourself, filling out your checkbook, driving a car.
See there, agnosia, really addresses perceptual problems. Alzheimer's
patients do not see the world the way we do. They can't see
the whole of things but also they have difficulty recognizing the
familiar. So this leads them to say things and experience things
such as "this isn't my house" or "you're
not my wife." Again, from a caregiver's point of view
to hear that statement, I think, is understandably devastating.
What's intriguing is that sometimes when the person speaks,
when the caregiver speaks, the patient can recognize them. That's
why this is not a memory disorder per se. It's an inability
to perceive the world accurately. This is the kind of information
that I believe is useful. It doesn't cure the disease. It
doesn't change anything. But it's this kind of knowledge,
I think, that can help care providers understand what's going
on and change something that sounds totally crazy, "What do
you mean this isn't your house? You've lived here 40 years"
to appreciate that it's part of the disease itself and that
sometimes changes the interaction.
The third symptom is aphasia, language impairment, and I think
most people have known someone who has had a stroke and developed
language impairment. Alzheimer patients develop the exact same
kinds of language impairments. But the reason that's particularly
crucial to the discussion today is that part of decision making
involves having a conversation with the person. And when an individual
has language impairment, that is they can't totally understand
what's being discussed or they can't express themselves,
the language impairments of Alzheimer's Disease get in the way
of having a meaningful conversation sometimes, even when the person
might have other abilities.
The one other point I wanted to make was that Alzheimer's
Disease is a relatively slowly progressive dementia and, in fact,
most people don't come to the attention of their families or
a clinician until they've been ill for two or three years.
Why might that be? Again, in the document, you talk about the
staging and it turns out that each of these stages, and again these
are really for our convenience, is about three years in length.
It's not generally until people start developing the second
stage of the illness, the language problems, the inability to do
self-care, the inability to perceive the world correctly, that other
people notice there's a problem.
My guess about this is that if you're retired, you live a
relatively routinized life, you don't really need to learn too
many new things. You do things the same. But when you get lost
in the neighborhood, when you stop paying your bills, when you don't
file your taxes, you come to family's attention. So people
are often ill for several years and it's not until the second
stage even today that they often come, I think, to our attention.
And I think that's important to keep in mind.
Now Greg has made this point, but I want to touch on it for a
bit. I'm a psychiatrist and I got interested in these diseases
actually when I was in medical school. I had an interest in psychiatry,
but I was rotating on the neurology service and started to see that
people with brain diseases had what were traditionally considered
psychiatric symptoms and that's how I personally got involved
in this field.
But one of the first studies that I did almost 25 years ago now
was to interview 55 consecutive families and just ask them what
kinds of problems are you having. Now the main thing I wanted to
impress you with here is how long this list is. We ask people both
the prevalence, how often, does this occur and you can see the numbers
are pretty high and are they a serious problem for you. If you
look at problems, catastrophic reactions refer to emotionally explosive
episodes, most families report those. Suspiciousness 63 percent.
Making accusations, 60 percent.
Greg mentioned a patient who made accusations towards a spouse.
In fact, Dr. Alzheimer's original patient presented with two
problems. The first was that she had always been an excellent housekeeper
and her ability to cook and keep the house up had been failing.
Remember that's second stage disease. And second, she was
accusing her husband of infidelity, a delusion of unfaithfulness.
So these symptoms are part and partial the disease. They are
not part of the definition of it and I think that's appropriate.
These are disorders of cognition. But I think it's very important
to appreciate that much of what caregivers struggle with are symptoms
that we would traditionally think of as behavioral or psychiatric
or I prefer the term, neuropsychiatric.
I also want to make the point that I'm probably not quite
as pessimistic as Greg, maybe because this is how I focus my clinical
work. But I, in fact, think that these symptoms are often more
treatable than the cognitive symptoms. I agree with Greg actually
that the drugs that we have are limited but I do think there's
good evidence that non-drug treatments for many of these symptoms,
change in the environment to address the patient's needs, actually
can diminish the impact of these symptoms. So that recognizing
and I would hope that the report might just pay a bit more attention
to this, that between 60 and 90 percent of patients have significant
neuropsychiatric symptoms and we can help patients and their caregivers
by treating those. I think that's an important positive point
to make. Again, it's a very long list here.
Now people had actually criticized that work saying, "Rabin,
you're a psychiatrist. This is an ascertainment bias. Either
you're looking for it so you find it or people come to you because
you're a psychiatrist."
So fortunately, my colleagues, Constantine Lyketosos and John
Breitner, have done a very important study in Cache County, Utah.
This is a county in Northeast Utah that has the longest life expectancy
on average in the country. They have been able to do an epidemiologic
study where they've interviewed more than 85 percent of the
65-year-olds in this county and have followed them longitudinally
since 1996. So these are mostly people living at home and these
are the prevalence figures that they've found. Twenty percent
have delusions. This is at one point in time when they did a single
interview. Fifteen percent hallucinations. Twenty-five percent
agitation. Was essentially wandering 15 percent. But again, this
is just to give you an idea of what caregivers are dealing with
on a daily basis. It's often at this behavior level rather
than "Oh, he's forgetful." Again, I do think we have
some treatments to offer that.
Finally, I just wanted to touch on just a few other points, some
of which are made in the report. First is, and Greg mentioned this
and I think this is crucial, that 75 percent of people with Alzheimer's
Disease are unaware that they have a significant problem even at
the beginning of the disease and this is absolutely crucial in thinking
about the ethical and moral dilemmas because you can't sit down
and have a meaningful conversation with a person about what they
would want when they have no insight into the fact that they're
Now 25 percent do have insight. As the disease progresses, ultimately
all individuals lose that insight. But even at the very beginning
as Greg said, the majority of people don't. This is more my
belief than backed up by research. But I believe this is actually
a peculiarity of Alzheimer's Disease rather than other dementia.
You don't see this in patients with Huntington's disease
to anywhere near this extent at the beginning of the disease. And
even patients with vascular dementia have much more insight.
So I think it's very important to appreciate that the caregiver
is struggling caring for someone, and as I'll say at the end,
making decisions with and for someone who can't participate
actively even in the beginning. And I think that's a tremendous
source of challenge and difficulty for the caregiver.
A second point I wanted to make is that about two-thirds of people
with dementia and Alzheimer's Disease live at home. So about
one-third are in long-term care and these numbers have not changed
since the mid 1980s when people started counting. So that nursing
homes in a sense really are in large part dementia care facilities.
However, there's been a very dramatic change in this country
in long-term care. In 1980, there was no such thing as an assisted-living
facility. A whole industry has grown up in the last 15 years called
assisted living. Probably about one million or so people now live
in assisted living and studies just completed by Adam Rosenblatt
and Constantine Lyketsos and I'm part of that as well show
just as in nursing homes about two-thirds of individuals in assisted
living have dementia.
What's intriguing is that these facilities were built and
the whole industry was established on the idea that they would treat
frail elderly individuals which is, I think, a very good motive.
But what's happened intriguingly is that as states have stopped
increasing the number of nursing home beds, there are fewer nursing
home beds today than there were in 1985, primarily because states
don't want to license them because of the economic issues that
are discussed in the report, this whole industry has built up which
is a private pay industry. But just because we haven't increased
the number of nursing home beds doesn't mean the institutional
care has gone away. Now we have one million people or so in assisted
living and two-thirds of them have dementia.
What's happened is that all the mild dementia cases, relatively
mild, are in assisted living and what's happened in nursing
homes is that they now treat the very advanced patients. So that
nursing homes have changed very dramatically. They used to be called
retirement homes like 25 years ago. When I started, they were called
retirement homes. Now the vast majority of people there have dementia
and 65 or 70 percent of people with dementia die in nursing homes.
I think that's very important to keep in mind.
Finally, I did want to mention that I'll come to the research
I'm doing at the end but you can measure quality of life in
people with dementia. At least, I believe you can and that we're
able to do it and that even in people with severe dementia, they
can have a positive measurable quality of life, but that quality
of life in advanced dementia is interfered with by not just disease
severity but by the presence of pain and by inactivity. Pain and
inactivity are two things that we can address. We can't change
the disease severity but even in advanced disease, we have some
things to offer people and I think that's important. So I just
think it's important to say that there's a range of quality
of life in individuals with dementia and with good care, it can
be improved. I don't want to be a Pollyanna but it can be improved.
So what we now have in a sense is a de facto dementia care system.
We have nursing homes and institutional care on one extreme, we
have the majority of people being taken care of at home and we have
a whole variety of services that are being developed and it's
a challenge to get them sometimes but that whose goal is primarily
to try to keep people at home as long as possible. I do think that
one of the important research agendas for the future will be to
see whether we can demonstrate first that these are effective in
improving quality of life and second, if they are, if they can keep
people at home longer and that has not been demonstrated and I think
that's an important research issue.
Now to switch to caregivers, again things that you already know,
about 80 percent of caregivers are women. I've already said
that about two-thirds of Alzheimer's patients and dementia patients
live at home. But the carers of the people with dementia, they
are women at all stages. That is at home it's 70 to 80 percent
women. In long-term care, my guess is it's 90 percent women,
if not more.
We have recently found and several other groups have found the
same thing. If you look at who are making the end-of-life decisions
for the person with dementia, in our study it's 70 percent women,
half spouses, a quarter daughters and daughter-in-laws and about
ten percent nieces interestingly enough. So throughout the course
of this illness, it's predominantly women who provide the care
and decision making.
I also though think it's important to point out, and I think
Greg has mentioned this as well, that long-term care and nursing
homes are an essential part of a dementia-care system. Ethel Shanas
who is a socialist, I think, at Northwestern in the 1970s made the
point that it's a myth that Americans dump their relatives in
long-term care and I think that's just as true today. The evidence
for that is if you look at people with dementia who's in long-term
care, who is at home. By far the strongest predictor of being in
long-term care is the severity of the disease. The most severe
people end up in long-term care. But in addition, people with greater
psychiatric/neuropsychiatric symptoms are in long-term care and
finally, people who have fewer available family care providers.
So I would hope that the report might be able to be a bit more
positive and perhaps it is already in saying that as a moral society
we want to develop a care system that meets the needs of people
and as long as we have diseases like this that severely impair people,
we will need long-term care. We just want to do it as good as we
can and the report does say that. But perhaps that could be highlighted
a bit more.
Then a few other things about caregivers, there's an extensive
literature that's been developed over the last 30 years that
show that people who care for individuals with dementia have about
doubled the rate of emotional distress as similar people in the
community. So if the standard rates of emotional disorder in the
community are 15 or 20 percent as some epidemiologic studies show,
about 40 percent of caregivers have significant emotional distress.
Of course, the other side of that is 60 percent don't. I
think one has to keep in mind that clearly being a caregiver increases
the likelihood. In one of the studies that I did a long time ago,
we looked at positive mood and we found that about one-third of
caregivers had a positive mood above the mean of the population.
Of course, it should be 50 percent above and 50 percent below the
But I think it's a mistake to be totally focused on the negative
aspects of caregiving. And when you talk with caregivers, they
will tell you the positive, many will tell you, both the positive
meaning they will get from providing it and the negative. As did
the cab driver who drove me over today asked me what I was doing
and from National airport to here, we talked about positives and
negatives of the care that he was able to provide. So I don't
think we want to dwell too much on the negatives.
But there are some surprises when you study caregivers. This
is a study that we did a number of years ago following caregivers
for two years and these are individuals who are caring for individuals
with dementia, the closed circles here, and individuals who have
metastatic or disseminated cancer. We found very few emotional
differences between the two groups.
But what I had not predicted was that over two years there were
not increases in the emotional distress. That is as the disease
got worse our prediction was that there would be more emotional
distress in the care providers. We found that either it stayed
the same or actually went down over two years. I think that's
The one difference that we found between cancer caregivers and
Alzheimer's caregivers was over here and that is that Alzheimer's
caregivers reported more guilt than cancer caregivers. I'm
going to come back to that at the end because I think that relates
to the ethical challenges that people face.
One other point I wanted to make about caregivers is that not
surprisingly if some caregivers are not doing well emotionally and
others seem to be doing relatively well, we ought to be able to
identify predictors of who's emotionally distressed and who
is doing relatively well. As you would predict, the severity of
dementia does correlate, albeit modestly, with the level of emotional
distress. This is a multiple regression so these are all independent
contributors to emotional distress.
We found that caregiver personality correlated with longitudinal
distress, not surprising. The way people have dealt with other
stresses in their lives predicts the way that they will deal with
this difficulty. And that caregivers that tend to be more flexible
tend to do a little bit better. We also found though on the positive
side that the strongest predictors as you can see of doing well
are (1) having a larger number of social supports and (2) saying
that your spiritual or religious beliefs explain this situation
in some way. The people who say yes to that statement do much better.
So again, I think this just points out that there are lots of things
that we can be doing to help caregivers do better in this challenging
I would conclude from some of these data that first adaptation
and resilience is actually the norm. Again, caregivers don't
get worse over time. They actually adapt to what is a very challenging
situation. Frankly, I think this is going to be true of any stressful,
traumatic situation. If we went out and studied the survivors of
the hurricane in New Orleans and Mississippi, I think we would find
a whole range of emotional responses and that many people will be
emotional causalities but many will do well and be surprisingly
The final point I wanted to make about caregivers is that there
are now more than 30 studies to show that directly intervening with
the caregivers, either providing information to them, education,
or providing emotional support, can improve the emotional well-being
of the caregiver, 30 studies. It's much more powerful than
the cognitive enhancing drugs. I don't know if you would agree
So again, just to emphasize, there is a lot that we can do. We
can't fix the biology but we can help caregivers with this high
level of emotional distress.
The last thing I wanted to touch on were some of the ethical challenges
and this really came from this chapter in the book. What I wanted
to point out was that what is emphasized in the report now are really
the bottom two issues. That is the challenges of medical decision
making for this advanced patient and a bit about feeding tubes,
not really all that much.
But I wanted to point out that there are a large number of other
issues that I think that the report doesn't address and I do
think at least need to be mentioned. Actually one of the things
that I included here was the day that I was putting these slides
together I got an email from a child of one of my patients. She
has given me permission to reproduce it. So it's in the packet
and I think if you read this, it's a very sensitive portrayal
of a challenge that this family is facing.
It turns out that about 20 percent of people with dementia live
alone, usually because that's what they want to do. Their spouses
die. This woman is still able to live alone with support, a lot
of support, from her two children because that's what she wants.
But what her daughter lays out in that email is that, by the way
the patient was a very successful business person, somehow she got
one of these notices in the mail that she won a lottery and all
she needed to do was give them some money. Once she got on one
of those lists, she now gets many of these a week and her judgment
is impaired and what they discovered because she was doing her own
checks was that she had sent thousands of dollars to these things.
The dilemma that the daughter lays out is how do we deal with
that. Do we stop the mail delivery at the house which seems to
be a pretty intrusive thing for an independent person? And we would
do that because we would want to protect her. I think she is asking
is it morally justified to do that. But then she goes on to say,
"But, Dr. Rabins, I can see this is only the first of lots
of similar challenges. If we say yes to that, we're going to
have to say no in a sense to many other things and that's going
to be very difficult."
These kinds of problems come up all the time. I get calls and
I give a lot of public talks. Every talk I give, two or three people
raise their hand and say, "My mom or dad is living alone"
and so and so and "Now that I've heard your talk I know
that he has early Alzheimer's. He denies he has a problem.
I can't get him to the doctor. What should I do?"
Again, I believe the challenge here is the person doesn't
have insight even at the beginning of the illness. So it's
not that this individual is making an informed decision that they
don't want to be medically evaluated. They don't want to
know if they have a problem. It's that because they can't
appreciate it then the challenge in the sense, the beneficent challenge,
to the family is to say "Should we `force' him or get
him to do it in some way?" That's an example.
Another example maybe I could touch on, and if there's time
for discussion we can talk about more, is the third from the bottom
and that's the issue of lying. Many people with these diseases
say things like I mentioned like "This isn't my home,"
"You're not my spouse." But even more important,
more difficult sometimes, is that they have a pattern when which,
and it's often every afternoon, they'll say, "Mom is
coming to get me" and they start getting agitated, "Where
is she? I know she's coming to get to me." Of course,
this is a 75- or 80-year-old individual.
And you can start to see that the challenges are (1) do you tell
the truth. Do you say, "But your mother's been dead for
30 years" and that would be truth-telling. I think most of
us would hold that as a very high value. But in this instance,
this serves no value for the sick person. Telling her the truth
or him the truth doesn't help them. Why? Because he cannot
grieve that loss. Every time you say, "But your mother's
dead" he's never heard that before and has an acute grief
response. So that's not helpful.
And sometimes you can distract them. Sometimes you can say, "Your
mother was one of the nicest people I know" and you get off
in a conversation and it goes away. But many times, the most effective
thing to do is to lie, is to say, "Don't you remember mom
went to the ocean? She's going to be back on Monday."
"Oh, yeah. I forgot." Then they're fine. Again,
is that morally justified?
I think you can see that even from the beginning of the illness
there's just a whole range of challenges like this. This goes
back to that finding that we had on guilt. I believe, and this
is really just a guess, the reason that there's more guilt in
Alzheimer's caregivers than in other caregivers is that they're
dealing with these kinds of issues all the time and it changes the
relationship in part that they've had life-long with the spouse,
a parent and uncle, whatever.
I do think it's important to say that Elaine Brody who was
doing a lot of this work 25 years ago made the point and I think
it's important that we should not call this a role reversal.
This is not that the children are now the parents and the roles
are reversed. That relationship is unchanged. It's still a
parent/child or spouse/spouse relationship. But the responsibilities
have changed and so the decision-making responsibility falls then
to the surrogate rather than that individual. I think it's
that conflict between role and responsibility that's such a
huge challenge for families. I would hope that you could highlight
that a bit more in the report.
Finally, if I can just very quickly run through some of the research
that I'm doing now. We've just finished a longitudinal study
of 125 individuals with late stage dementia. Ninety-one of them
died during the study and what we're focused on is what medical
decisions are made. But more importantly, how are they made and
how does that impact the family?
And we're not really even done entering the data but I ran
a few things just for this meeting. We had a very high percentage
of individuals who had advanced directives in the study. That's
not surprising because the subjects were ascertained in nursing
homes. So when they went in, they were offered one.
But I wanted to point out that in addition to the challenges that
are mentioned in the document, you can see that there's a real
difference in use by race and sex and that is that another reason
that these are not the sole answer is that they will be differentially
used by different groups of people. Individuals who are better
educated, more intellectual, think more about things are much more
likely to use these documents. So if we rely too much on them,
we will also exclude a large number of people
And I agree with Greg and I think the conclusion of the document.
They have a role to play and in fact, we have intensively interviewed
in a qualitative way one-third of these individuals and of those
individuals, the third who had had both an advanced directive document
and said that they had extensive discussions with the person, they
said that the document had helped get the discussion going. That
was the main value of it. So as you conclude in the report, I think
that is a value of them but we want to somehow get society to appreciate
that these issues need to be discussed.
Then finally, I did just want to say what kinds of decisions are
surrogates actually making since this is the bulk of your report.
This looks at the surrogates of 73 of the individuals who died during
our study. So this is in the last six months of life. Half of
them faced a decision about hospitalizing someone. About one-third
of them faced the decision about placing a feeding tube and in our
region, feeding tubes are actually very rarely used. You can see
that a high proportion of people decided against hospitalizations,
feeding tubes, ventilators. On the other hand, there were things
that people decided in favor of.
Now we also looked at were people in a sense satisfied with the
decisions that they made and how difficult were they. So I've
broken things down and these are in a sense decisions to do something,
to treat, and you can see that most people said when they decided
to do something that wasn't so hard and most of them were pretty
satisfied with the decision. But when people had to make decisions
to limit treatment, so I've even included comfort care here
as a treatment-limiting type of decision, people struggled much
more with them. They found these more difficult on average and
they were less satisfied.
Now I don't think that's bad. I actually think that this
is what we would hope. When people face difficult decision, they
struggle with them and they may never be totally satisfied with
that decision. But they made the decision, and I think as the report
emphasizes, someone has to make these decisions. But we should
not be holding out the idea that any approach whether it's a
discussion or an advanced directive is going to make everybody feel
good about making hard decisions. I actually think the report does
a very nice job of laying that point out.
I'm sorry I went on so long but I will stop there. Thank
CHAIRMAN KASS: Thank you very much. Could we get the
lights please at your convenience? Someone? Thank you. Thank
you both for very lucid and thoughtful and helpful presentations.
The floor is open for discussion of questions or comments to either
Dr. Sachs or Dr. Rabins. Frank Fukuyama.
DR. McHUGH: I just have a question for both of you combining
that 90 percent turnover in the professional caregivers and then
the data about the emotional distress and so forth. I was in Japan
over the summer and there was a front page article about how the
Japanese government was now importing all of these nurses from the
Philippines and giving them training to deal with their aging populations.
We're never as organized as some other countries.
I'm just wondering whether a higher degree of training, more
economic incentives, some kind of certification, whether any of
these would materially effect. What is the labor market in that
sector look like? My impression, for example, is that since it
is close to minimum wage like a lot of other minimum wage jobs,
a very high proportion of minorities represented in it. Can you
just say something about that, either one of you?
DR. RABINS: I can maybe and Greg can as well. I would
make one point which is again although I agree with Greg on those
turnover figures, again there's a wide range of turnover in
facilities and there's a little bit of research on looking at
what are the low turnover facilities like and what are the high
turnover facilities like and it is true that the low turnover facilities,
the pay is better.
But I think in fact the stronger difference is that the morale
is much better. I think that in the facilities that do better there's
a real effort to, in a sense, professionalize these individuals.
So I think that's part of the solution. I do think that this
is very hard work. I mean this is not just flipping a hamburger
at McDonald's. This is skilled labor in my opinion and I do
think that improving the pay would make a big difference. But I
think if we could change the attitude, partly of our society, and
say these are professionals and this is a needed part of our healthcare
system, I think that would help and then professionalize it through
recognizing that there's a real domain of knowledge that these
good caregivers have, I think those would all help.
DR. SACHS: I would agree with that, but I think if you
look at many nursing homes in areas that have a large percentage
of Medicaid patients, you'll find things like in one of our
nursing homes a lot of the nurses are Filipinos. It hasn't
been because of some concerted effort to go over and bring them.
But it's de facto happening.
There are big differences in facilities and I think that some
places, probably the kinds of places that people in this room would
have their relatives in, are going to be the places that are going
to be more private pay, higher standards, more involved in the family
and are more likely to be able to sustain that kind of staff and
have that good morale. I think for a lot of other facilities they're
trying to just get by and actually make their budgets in an era
in which they're getting less money and having to provide care
for sicker patients and still paying barely above minimum wage.
I think when people have looked at things like increasing the
hours of training required and things like that there's been
a real concern about whether or not you're going to be driving
people away from the position altogether given how hard it is and
how low paid it is.
DR. RABINS: I might add. I think this is an excellent
example of a topic where research, I think, actually could answer
the question. It's not very sexy. But supporting, engaging,
the NIA to research this kind of question would be very positive.
DR. FOSTER: The other issue just to answer that specifically
that I've just seen in a controlled situation where a very strongly
supported church-oriented nursing home was present, the change
of the director made a huge difference. This is a nursing home
that had the first Alzheimer unit in the State of Texas and so forth,
but the leadership is absolutely critical. I mean the new leader
really loves these patients and so forth and so on and he's
just transformed and the turnover has just dropped.
So it's like most things whether it's a department of
geriatrics or whatever. The leader is the critical person here,
not just the people that work under, I think, There's really
a dramatic change when you get the leadership. That's where
the morale really goes up.
DR. RABINS: Right. I think that's the point to make
that the leadership sets the tone and when it makes the caregiving
the central act and shows people that they actually make a positive
contribution to the quality of life for those people that trickles
down to every staff member and makes a huge difference.
DR. SACHS: But the pool of people who are going to be those
leaders, I mean there's a national nursing shortage. Geriatric
nursing practitioner programs are struggling to attract people just
the way we are in geriatrics and in general, these are positions
that pay less well than hospital positions. So you have a similar
sort of problem that when you're fortunate to get people who
have those sort of qualities. But to provide that for a nation
that's facing this sort of number of people aging, we have to
do something other than just hope that it's going to change.
CHAIRMAN KASS: Gil Meilaender and then Rebecca Dresser.
PROF. MEILAENDER: We around this table, some of us like
to argue with each other and I'd like to see if I could infect
you with that spirit just a bit. And what I mean by that is this.
Though clearly you agree on many things, just a very rough categorization,
I would say that the tone of Dr. Sachs' presentation was a little
more pessimistic and the tone of Dr. Rabins' a little more optimistic,
granting that those categories don't, they're very broad.
I was wondering. Dr. Sachs, where is Dr. Rabins a little wrong
or off-base and, Dr. Rabins, where is Dr. Sachs a little wrong or
off-base? Just take your own emphases and I'd like to see you
react to each other in that way.
DR. SACHS: I went to the University of Chicago. So I like
to argue. I would say that part of that has to do with the tone
that I took deliberately was to be a little bit pessimistic to help
try and motivate some of the kinds of attention and change that
I think is necessary. There are many stories of heroic kinds of
care that's being given. I didn't talk at all about the
kind of model that we've done with funding from the Robert Wood
Johnson Foundation to do palliative care for people with dementia.
I think there are models out there and there are lots of positive
things that can be done.
But the kind of demographic imperative that we have and how unprepared
we are, I think there should be people sounding an alarm about this
and it's not that what he said is not true or that these aren't
good examples and that there is a lot that can be done but many
of the examples of, like my program, your program and the kinds
of things that can be done for caregivers are rarely done outside
of funded studies, outside of special kinds of situations where
they are academically affiliated, VA affiliated, other kinds of
what I would call really top-of-the-line kinds of programs.
So yes, we can do that. But to think back to when you're
talking about the kind of doctor that you want or the kind of doctor
that's out there, the doctor can write a prescription for a
cholinesterase inhibitor. The doctor who is seeing patients every
eight minutes is not going to be equipped to do that sort of counseling
about caregiving. He doesn't have the staff. Medicare doesn't
pay for the social-working nurse practitioner to provide that kind
of comprehensive care. So there's a lot of stuff that we already
know we could do that we could do better, but I don't think
we have the infrastructure, the systems or the incentives in place
to make that happen more regularly for the vast number of people
who need it.
DR. RABINS: I guess I should disclose that perhaps since
my psychiatry training was under Paul McHugh, I both love to discuss
and challenge people but tend to be on the optimistic side too I
think. But I'd probably if there was one place that I would
disagree with Greg is I'm a bit more optimistic about biological
advances. I don't think these are going to ultimately change
the issue, but I do think that animal models suggest that there's
a real possibility that if this is an amyloid disease, if Alzheimer's
Disease is an amyloid disease, that some of that burden may be removed
from the brain, but that perhaps that will alter the neuro-toxicity
of the process. So I think that may happen.
But what I believe the implication of that is is that what's
happened with Parkinson's Disease is a very good model. L-dopa
has revolutionized the treatment of Parkinson's Disease and
now there are a whole other number of dopamine agonist medications.
They have probably doubled the life expectancy of people with Parkinson's
Disease (1) but (2) they have significantly increased the number
of years of good quality of life. However, they haven't diminished
the number of years of bad quality of life at the end because people
live much longer. So the severely disabling aspect of Parkinson's
Disease unfortunately, the brain keeps deteriorating.
And I think what may happen in the relatively near future is that
in fact we'll be able to modify the course of Alzheimer's
Disease and we will actually see a drop in the number of people
in the middle and later stages for awhile. Then after 15 or 20
years, of course, when it gets back in equilibrium, we'll be
right back where we are now.
Second, I do think that even if we could make a dramatic difference
or a preventive difference in Alzheimer's Disease. I do think
that the other great medical challenge that's barely been addressed
is the issue of frailty in the elderly. I mean that people who
don't have dementia that most individuals by the time they're
90 have multi-organ failure. This is mentioned in the report.
So I think in fact what will likely happen is even if we make
a big difference in Alzheimer's, something else will in a sense
come up. But what I do think is it will be a lot later in life
and I think that the 70s and the 80s, in fact, many more people
will have healthy lives. But we will have as many very debilitated
I do think that the ethical challenges will be different because
I really believe that as the report emphasizes that the cognitive
disorders have a rather unique aspect of ethical and moral decision
making because they remove the ill person from the conversation.
That doesn't happen, I think, with the nondementing illnesses.
So I think that will be a change. That may be a place that we disagree.
One of the reasons that I feel that supporting research is so
important is an optimist I guess. I think that things can be changed
and one way to change them is to have public fora like this. Another
way I believe is to have research where you can show people this
is cheaper than this but it's more effective. This is good
care and this is bad care. And I think that adds an aspect to the
conversation that is very powerful.
You'll never convince everybody, but I believe data can convince
a lot of reasonable people that there's a right way to do things
and a wrong way or a less right way. So I'm an optimistic in
that way, too and maybe we both are.
DR. SACHS: In different ways, I guess because I think frailty
is something that's at risk of becoming just like Alzheimer's
and minor cognitive impairment. There are people in basic research
in aging and geriatrics and gerontology who think that's sort
of the next target. So you find that there are certain genes and
interleukin-12 is elevated in people who are frail and then you're
going to get drug companies who are going to work on an expensive
So we're going to be doing all sorts of things like that instead
of providing basic home care needs, supportive care, long-term care
and palliative care because all the economic interests are for drug
companies for making profits to do those sorts of things. The researchers
have a very great interest in being funded to do their work and
the kind of research that you do, that I do, that other people should
be doing in this area isn't what gets funded.
DR. RABINS: I maybe have one more thing to add and I agree
with that, Greg. I would just say that I happen to believe that
overall this is very moral society and again one of the reasons
I was very glad that this Council is addressing this issue is that
I believe that if we can continually appeal to that side of this
discussion, things can get better. So I think biomedicine is part
of it. I think this part of discussion is part of it. And I think
making the points that Greg is making that we need to provide compassionate
care for very ill people as you say in the report is absolutely
crucial and we can do much better.
CHAIRMAN KASS: Rebecca Dresser please.
PROF. DRESSER: I would like to ask you both about, I guess,
the component of this that interests me the most which is getting
better at ascertaining how patients will experience treatment interventions
and continued life in that circumstance. I guess, I'm not a
physician, but my sense is there's under-appreciation of the
way that dementia affects how people experience various things even
things like a shot, but certainly a lot more ongoing things.
And I thought Dr. Sachs, Greg's article, in JAMA with
the case example of the woman, I forget the name of the medication,
but it was bone strengthening.
DR. SACHS: Bisphosphonate.
PROF. DRESSER: Right, bisphosphonate, how that didn't
work with her and that's a treatment that I think an ordinary
person would say, "Oh well. That's simple. No big deal."
So I guess I would like you to talk about those things and also
in the Journal of General Internal Medicine, Greg, you talk
about two cases, one where a family chose tube feeding and IV antibiotics
and one where a family didn't and the patients were similar.
I wonder if you thought one was better for the patient than the
other or they were both good care in a certain sort of way.
DR. SACHS: I'll start with the last one first. I think
when I was younger I would have been much more upset at and resistant
to participating in the care of a patient who had the repeated hospitalizations,
the tube feeding and the IV antibiotics over so much time. I would
have probably felt like I was inflicting more suffering upon that
But having worked with families with, as those two cases indicate,
a range of feelings about how they view the effect of the illness
on the individual, that family in particular, that was still mom.
They were very devoted to her, very much felt like this hadn't
been this great deforming sort of illness and that by doing all
of these things and taking all of this time to get to this point
of choosing hospice that they were really filling their obligation
to her and that felt right for that family and for that patient.
It felt sort of very genuine and reflective of what that family
and patient had been like. So I ended up feeling good about that
case on a level that I think I didn't think that was possible
10 or 15 years ago.
The other family was a very intellectual, high functioning, academic,
professional sort of person and it really was about the life of
the mind. They felt like he had been gone for quite some time.
So it really had to do with a very different view. I don't
think it was in a sense the value of life, but what it was worth
putting somebody through given those circumstances. I think those
stake out a range of options and as you get more towards things
that are more burdensome and that increase the suffering of an individual
or prolong suffering the more I have felt compelled to advocate
for foregoing those kinds of treatments.
The first one about the use of that medication, in particular
of bisphosphonate, the instructions if anybody isn't familiar
with it, you have to take the medicine like that on an empty stomach
when you first get up, drink it with an eight ounce glass of water,
stay upright, drink or eat nothing else for the next 30 minutes.
Now I have patients who are cognitively intact and 70 years old
who complain about that.
So if you can imagine some caregiver trying to get a patient to
do that or even for normal preventive things, doing a prep for a
colonoscopy, that is not something that's easy to do with an
uncomprehending, resistant and frightened patient. Many of the
things that we think of as being no big deal to do to people medically,
people tolerate because they understand it, they see the end, how
it's going to help them, they put up with the adverse effects,
they put up with the pain.
When somebody can't appreciate that and doesn't even appreciate
that they have an illness or why do I need a mammogram, you're
talking about another level of burden that you are inflicting upon
the patient and then trying to get the caregiver to actually put
somebody through that. You're actually adding to their suffering
in a sense. So I think there are ways in which much of routine
medical care should be reexamined when thinking about somebody with
dementia and look through those glasses as whether or not they're
DR. RABINS: If I can take two minutes. When Dr. Kass
called me to ask me to do this, I told him that I wanted to make
sure that the patient with the disease wasn't left out and I
didn't really address that. After I said that, then I thought
how could I possibly even do this and one of the things that I do
educationally is to make teaching video tapes and now DVDs.
It turns out that with a group at the University of Maryland and
the two that I've made this year, one is on end-of-life decision
making and care. The second is on what might it be like to have
dementia. And that might be part of this. So with indulgence,
if I can get this to work, I would like to show this. This is not
a patient of mine. This is someone that was made available, her
name is Shana, through the University of Maryland Geriatric Education
DR. RABINS: And I am sorry. I don't want to take
too much time but I think part of the answer to that, Rebecca, is
that you can empathize with people with Alzheimer's Disease.
I think you can imagine what it might be like as Greg said not to
understand why you need a medical test and even at the end-stage
of the illness, I don't think we can lose sight of the fact
that these are individual people just as these are individual families
and so there isn't one right way to do things. But that we
can imagine that things that for us are not upsetting or frightening
would be extraordinarily distressing.
That does need to be taken into account. I think sometime both
on the positive side of deciding when somebody's trying to decide
whether they should do something or to not do that I inject that
into the conversation with the decision maker. Sometimes they don't,
I feel I can be a little bit more objective in a sense particularly
if it's a patient that I've known for awhile in capturing
their personhood a little bit.
CHAIRMAN KASS: Diana Schaub.
DR. SCHAUB: Yes. I wanted to ask a question about one
statistic. You said that 75 percent of those with the disease are
unaware that they have the disease. Is that just because of the
point which diagnosis is made? That it's usually not until
the second stage and would that shift if diagnosis were made earlier?
Then a further question, would that be good? Is early diagnosis
something you want with Alzheimer's? It's certainly good
if you have cancer and we've made a real push for early diagnosis.
This may be related to the question about whether we want to focus
on prevention and cure or whether we are concerned with caregiving.
If we're concerned with caregiving, is a certain obliviousness
until things reach a certain point or not good?
DR. RABINS: Is that good?
DR. SCHAUB: Is it better for patients and families to
know what's coming?
DR. RABINS: I think to your first question there's
only been a little bit of research on this insight issue. But both
clinical experience and a little bit of research that there is
available suggests that this loss of insight is from the very beginning.
That most people never can appreciate that they have a problem.
In a way, I think of it in two ways. One is if your memory is
bad how do you know you've forgotten something because you don't
know you were told it five minutes ago. I think that is actually
part of it.
I think part of it actually gets back to agnosia. I believe it's
neurological inability to appreciate a deficit. Again, the reason
I say that is that you don't see the same rates in other dementia.
Its loss of insight, I believe, is less.
You asked what I think is not only an interesting question but
actually I've just finished another study that I hope will answer
the question of whether early recognition makes any difference.
I'm enough of a skeptic to think that is a reasonable question
and it worries me that $60 million is being spent now to identify
people earlier when we don't have a treatment. On the other
hand, I can understand that if a treatment came along tomorrow we
would want to do it.
So again, my personal belief at this point is that in thinking
about this from a more ethical point of view if there are no problems
I don't see a good reason, a strong reason, to push everybody
to get evaluated. The one justification I actually can see for
earlier recognition of a problem is to get people to have conversations
about the very issues that you're discussing here. I think
most research shows that many people don't have those discussions
until they're faced with an issue. And if we could say "You
have a very mild memory problem and we would recommend that you
have these kinds of conversation," that to me would be a benefit.
I'm not sure that would happen. So I don't personally think
that screening everybody right now is a benefit.
The other thing you asked, is it good that there's no insight,
this probably gets to my own values. I think in the end the answer
is no. I believe that particularly in our society where we think
our medical information is our own, that to not know deprives people
of planning, having conversation. So I think people should be able
to know. I don't know if that's quite the question but
I think it's a tragedy in a way that they don't know and
yes, maybe it's nice that it protects them from the horror of
But people used to say that about cancer. In the early 1950s,
a survey was done in the United States in which 85 percent of doctors
said you shouldn't tell someone they have cancer. Of course,
now you would find 100 percent of doctors who would say you should.
That's a cultural change that hasn't happened in France
or Japan where you still don't tell people directly. So I think
at least in our culture knowing we value that and it's a tragedy
that people don't recognize it.
DR. SACHS: Since I've already been characterized as
being more skeptical or pessimistic, I actually remain worried about
the push for diagnosing people earlier. The U.S. Preventive Services
Task Force when they reviewed evidence for screening dementia, let
alone something earlier like NCI, said that there really was not
evidence currently to favor or really against doing it. We don't
have good screening tools and we don't have effective treatments.
So what they talked a little bit about in their report was being
concerned about that also don't know about the effects of labeling
people and there have been a few studies that have looked at the
impact of giving the diagnosis and some of them in the caregiver's
perception of what having a diagnosis did or did not do and some
cases it had negative impact on people, changed relationships.
They were more likely to end up questioning every sort of little
mistake that somebody made. They were drawn to the negative. So
I think that in a sense it's an empirical question and I'm
eager not to start labeling people unless we have more evidence
or unless they're coming to me for an evaluation.
I have my primary care geriatrics practice and my memory center
practice. People who come who want to be evaluated, we do the evaluation.
My own patients who like the coordinator at the front desk says,
"Oh, Mr. So and So is having problems with her appointments.
She's starting to slip." We look at is she managing okay
and if she's still getting by and has her family support and
stuff, I don't push right hard to make an early diagnosis given
our limited armamentarium.
So it really to me depends a lot on what they're looking for
individually as they come to me. For the policy society-wide, I
think we need to hold off.
DR. RABINS: If I could add one more thing if I may. I
totally agree with Greg. The one instance where I think screening
may be appropriate is when people come into a hospital because we
know that there are very high rates of delirium. The strongest
risk factor for delirium is having an underlying dementia and there's
good evidence that preventing delirium has a huge positive impact.
So that might be the one place where screening might be beneficial.
But otherwise I agree with Greg.
DR. SACHS: I agree with that actually.
CHAIRMAN KASS: We have to stop. We have a session that
will begin at 2:00 p.m. and it is already 12:30 p.m. I want to
thank you both for really just wonderful presentation and forthcoming
discussion. I want to stress my appreciation, Dr. Rabins, for your
reminding us what a small slice of the caregivers' concerns
we have taken up in this report and you, Dr. Sachs, for calling
our attention to the incentive questions and this larger thing.
You said you had things that you'd have to suggest. If we'd
asked you if this were half an hour earlier, I would ask you, but
I might ask you if you wouldn't mind if you would jot some of
these things down to make sure that these suggestions are put before
us as we begin to think of some of the public policy matters and
how to begin to shift some of these incentives in the service of
the better care not driven by these sort of perverse factors, I
think that would be very useful to share around the table. We're
adjourned until 2:00 p.m. Thank you both very much. Off the record.
(Whereupon, the foregoing matter went off the record at 12:30
p.m. and went back on the record at 2:13 p.m.)