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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 report itself.

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 disasters ahead.

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 silver bullet.

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 decades.

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 significant way.

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 rate.

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 was.

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 of dementia.

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 or psychology?

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 most prominent.

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 ill.

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 mean.

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 important.

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 condition.

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 resilient.

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 with that.

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 you.

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 individuals.

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 IL-12 blocker.

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 individual.

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 appropriate.

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 Center.

(Video plays.)

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 this.

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.)

  - The President's Council on Bioethics -  
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