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THURSDAY, June 24, 2004

Session 3: Aging, Dementia, and the Care-Giver: Family and Institutions

Geri R. Hall, Ph.D., ARNP, CS, FAAN, Clinical Professor, University of Iowa College of Nursing, and Advanced Practice Nurse, Behavioral Neurology, University of Iowa College of Medicine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CHAIRMAN KASS:  Dr. Ben Carson.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CHAIRMAN KASS:  Health Information and Patient Privacy Act.

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

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

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

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

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

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

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

CHAIRMAN KASS:  Bill May.  Dan Foster.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

CHAIRMAN KASS:  Dan Foster, Gil and then Paul.

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

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

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

CHAIRMAN KASS:  Gil Meilaender and then Paul.

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

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

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

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

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

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

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

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

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

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

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

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


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

DR. HALL:  Only in one state.  California.

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

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

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

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

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

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

CHAIRMAN KASS:  Good.  Paul McHugh.

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

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

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

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

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

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

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

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

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

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

CHAIRMAN KASS:  Bill Hurlbut.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DR. LAWLER:  No.  A different issue.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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


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