The MacNeil/Lehrer Report; Living With Alzheimer's

[Tease]

BETTY STANNICK: I personally feel it would have been so much better if he had had a heart attack or he had had a stroke that was fatal -- anything other than to sit by and watch him go downhill progressively but so very, very, very slowly.

[Titles]

ROBERT MacNEIL: Good evening. The man you saw a moment ago is 61 years old and in all physical respects a healthy man, but his brain is slowly deteriorating, and in seven years has reduced him from a successful business executive to a state like early childhood. He is suffering from Alzheimer's disease, a form of senility that has only become widely recognized in the past few years. It's been called the disease of the century, and it is now the fourth largest cause of death in the United States. Doctors do not know what causes Alzheimer's disease nor how to cure it, nor even treat it. Recent experiments with drugs have raised hopes that a treatment may be found, and to that end the government and private groups have increased research dollars. Alzheimer's disease has also been called the worst of all diseases, with a devastating effect on the victim's families and friends. Tonight we examine the strain of living with Alzheimer's disease and the prospects for a cure. Jim?

JIM LEHRER: Robin, more than 120,000 Americans with Alzheimer's desease die each year, the end result of a process of death that is simply awful. It can begin almost casually with a slight loss of memory, maybe forgetting a phone number or a friend's name. As things nor remembered grow more common and more profound, there is confusion, initially maybe over where the kitchen or the corner drugstore is, eventually over most everything. And the personality changes; the power to reason slips away, along with the ability to talk in sentences, to feed oneself, to control the normal body functions. Finally, death comes, usually from another disease like pneumonia, because the patient's ability to fight them off is no more. It's a process that normally takes from five to 10 years. It's irreversible and unstoppable once it begins. There are 1.5 million Americans now at some stage in the process, all victims of Alzheimer's. Robin?

MacNEIL: The human toll of Alzheimer's was captured in a documentary about one victim, Bill Stannick, a New Jersey executive. The report was narrated by Dr. Timothy Johnson and was called "Someone I Once Knew." Here's portion of it.

NARRATOR [voice-over]: Just five years ago Bill Stannick was a supervisor in a large company, a successful and competent man. Alzheimer's disease forced him to leave his job. He is steadily becoming forgetful, confused and unable to handle the details of daily life.

BETTY STANNICK: Anything that's new he can't accept. Any information that is just put to him he doesn't retain. He can't remember his address. He doesn't know his phone number. He doesn't drive anymore. Little things that were so much a part of his life, that he used to do just automatically, he can't do at all.

NARRATOR [voice-over]: The symptoms of Alzheimer's disease are often subtle. Bill Stannick appears healthy and fit. Only his wife Betty understands how impaired he really is. Even the most simple household task is now beyond him.

Mrs. STANNICK: There's a big difference between the way Bill looks and the way Bill really is. You have to live with him to see the little things that happen, because every day they get a little bit worse, and he gets a little more confused.

[with Bill] Would you make the coffee? I think we need some coffee for lunch.

BILL STANNICK: We're out of coffee.

Mrs. STANNICK: No you have to dump that first, under the sink. Will you put a filter in it before?

Mr. STANNICK: If I can find them.

Mrs. STANNICK: They're in the top drawer.

Mr. STANNICK: Top drawer.

Mrs. STANNICK: Right here.

Mr. STANNICK: Here.

Mrs. STANNICK: No put it in the coffee. Now you have to put the filter in the coffee thing. Bill!

Mr. STANNICK: Okay.

Mrs. STANNICK: You getting it? Bill!

Mr. STANNICK: Yeah.

Mrs. STANNICK [to reporter]: Bill is very much aware. He is very aware of his shortcomings. That's why he becomes so depressed, because he becomes frustrated with himself, and yet physically he's fine, and this is annoying to him because he should be able to do these things, and he just can't do it, and it must be terrible. It must just be an awaful, awful feeling.

Mr. STANNICK: I can't remember anything, and anything I do have on my head, why, it slides off.

Mrs. STANNICK: And that gets to you and you get upset over it.

Mr. STANNICK: Yeah. I don't know. It just runs off my head, that's all.

Mrs. STANNICK: Yeah, I know that. But does that bother you the very most about it? That, or the fact that you aren't able to do the things that you used to be able to do before?

Mr. STANNICK: Some of the stuff. I could split a log.

Mrs. STANNICK: You sure can. [laughter]

Mr. STANNICK: In the wild -- I don't know.

Mrs. STANNICK: What do you suppose it is that depresses you? Is it -- what happens? Is it the disease?

[to reporter] He'll get upset and he'll go off by himself. If he's out too long I'll go looking for him, and when I find him he's usually weeping, and he'll say, "Oh, if my head would only straighten up," or "Why do I have to have this terrible thing in my head?" To me it's the worst thing that could have happened to him because he was such a strong, well-disciplined, determined man who knew where he was going, and he knew what he was doing. He has a complete change in personality. I feel that the man I married is not the man I'm living with today. He's just a different person. A completely different person.

NARRATOR [voice-over]: When Bill Stannick became ill, his wife decided to leave their home in New Jersey and move to New Hampshire to be near their children and grandchildren. The move has not been successful. It is painful for grown children to accept their parent's decline.

Mrs. STANNICK [voice-over]: when we have a family get-together at times, we're all guilty, I guess, but we will get carried away with a conversation and we won't ask his opinion; we won't give him a chance to interject anything into the conversation. We don't allow for his disability. What we do is tend to ignore it, and we ignore him.

Mrs. STANNICK: Well, Pop, are you going to stay at the lake this winter?

Mr. STANNICK: Yep.

Mrs. STANNICK: All right. With all your family?

NARRATOR [voice-over]: Alzheimer's disease changes family relationships, both between parent and child and between husband and wife.

Mrs. STANNICK: My husband has a great dependence on me now that he never had before. We have a role reversal. I was very, very dependent on him. He was my whole world. He was everything. We were the best of friends; we were lovers. We had each other, and that was great. Then, all of a sudden, he isn't there anymore in the same role that he was. I have to make all the decisions. I have to manage all the money. I have to decide when we go and when we stay. Just things that I never ever had to do before, never have thought I would have to do. And I don't like it, but that's the way it is, and that's part of the game with this disease. we had a very good life together before this disease, but now that the disease has taken over our lives, why, we just have to be content with just everyday living, and just be thankful that we have each other and that he has the rest of his health, and that I have my health, because that way we can go on as long as we are able to. And I often think of that poem, "Come along, grow old with me, the best is yet to be." And in my case the best has been.

MacNEIL: That film was made 18 months ago. Since then Bill's condition has deteriorated, and his wife Betty has been forced to place him in a nursing home. Last week we visited them there.

Mrs. STANNICK [spoon-feeding her husband]: You've just got to -- here, we'll clean that up in a minute. Let's eat first while it's still warm, okay?

[to reporter] He has regressed considerably. He has become incontinent. He doesn't speak more than a word at a time. Sometimes he'll put two words together. He seems to comprehend. He understands what you're saying, and he wants to communicate, but he just can't do it. I put him in the nursing home because I was persuaded by the family and everyone else that this was the thing to do, this was the time to do it. However, I still was wrestling with my conscience, and I had a guilt complex about it. And I didn't tell him. I told him he was going back to another hospital for more treatments, and after he was there for 24 hours and I went back to visit him, he looked at me and he said, "This is it." And I said, "Yes, Bill, this is it." Because he knew that this was the inevitable. I was devastated. I cried all the way home, and each time I'd leave I'd cry maybe a little less, but it took a lot out of me. That was the biggest decision, but it was the best decision. His prospects now are just -- I woule say he's in the fourth stages, almost the beginning of the fourth stages, as much as I can understand it. And he will just lose a few more functions, gradually, and he will eventually become bedridden and then he will just go, from some other disease, probably.

[showing Bill their wedding picture] Do you remember that day? Remember what day that was?

Mr. STANNICK: When was that?

Mrs. STANNICK: What do you think?

Mr. STANNICK: [unable to form the words] -- were happy --

Mrs. STANNICK: We were happy there, right? Happy?

[to reporter] The adjustment for me now is -- as I said: I am not a widow; I am not divorced; I am a married woman, and yet I have no husband. And this is a new phase of life, and it's a new adjustment. He's been such a big part of my life. He'll always be a part of my life, and if I were to make any sort of a new relationship with anyone they would have to accept that, that he is a very big part of my life and will always be.

LEHRER: Most of what's happening to Bill Stannick remains a mystery, a mystery medical researchers around the country are trying desperately to unravel. One of the major Alzheimer's research projects is at the Johns Hopkins University School of Medicine in Baltimore, Maryland. Dr. Peter Whitehouse, a specialist on Alzheimer's, is a member of that research team. Doctor, what is the state of knowledge now on what causes Alzheimer's?

PETER WHITEHOUSE: We don't know what causes Alzheimer's disease. There are many theories. Viruses, toxins, genetic components all have been suggested, but as you suggested, there's active research trying to uncover the cause.

LEHRER: Do you have a theory that you think -- that you particularly believe that may be where it's going to go, where it may end up?

Dr. WHITEHOUSE: I would prefer to take a step back and say I have a belief that before we concern ourselves with ideology, or at the same time, we've got to pay more attention to what the changes in the brain in this condition are. By describing which cells in the brain are affected, what chemical messengers are affected, then we can consider the questions of ideology. They go hand in hand.

LEHRER: Ideology. What do you mean by ideology?

Dr. WHITEHOUSE: Causation. What is the agent that causes the cells in the brain to die?

LEHRER: And that's what been happening to Bill Stannick's brain over these last seven years? Little cells have been slowly dying, is that right? And that's what causes him to lose a certain function?

Dr. WHITEHOUSE: That's correct. And identifying which cells are responsible for what part of his problems is very important, and I think are going to be an important clue to the cause eventually.

LEHRER: And there is nothing that can be done to retard it in any way, just stop it or even to slow it down?

Dr. WHITEHOUSE: That's unfortunately correct again. There is no agent or treatment that we've come up with so far that arrests the process, that slows it down in any way. There are, again, some suggestions that possibilities are on the horizon, but they are only suggestions.

LEHRER: Where are the experiments, or where is the major research in that area, as to how this might be stopped or retarded in some way?

Dr. WHITEHOUSE: Where in terms of desciplines, I think, it's a multi-disciplinary kind of enterprise. The disciplines are, as I mentioned, in neuropathology, the discipline of studying the brains and the cell loss; in neurochemistry, studying the chemical transmitters, the messengers that the cells send. It's in comparative studies with animals who have conditions that are perhaps similar. There are a wide variety of disciplines in Alzheimer's disease. Its cause and its treatment are at the focus.

LEHRER: But there is nothing close to a breakthrough or anything like that, in your opinion, right now?

Dr. WHITEHOUSE: One never wants to second-guess science, but in my opinion the progress in Alzheimer's disease is going to come in a series of steps, and predicting the size of any one particular step -- it may occur tomorrow, but it's unlikely. It's going to be a gradual process.

LEHRER: Why is it so difficult? What makes Alzheimer's such a difficult disease to get a handle on?

Dr. WHITEHOUSE: Alzheimer's disease is central to so many of the mysteries of the brain and the way we are as human beings, we don't understand what the relationship is between the brain and the problems that Mr. Stannick was demonstrating. In addition, Alzheimer's disease --

LEHRER: In other words, the fact that now he can only talk maybe two or three words at a time, and some of those words even being unintelligible -- you don't know what the relationship is there, you mean, between what happens in the brain and that ailment?

Dr. WHITEHOUSE: That's absolutely right. We have some understanding of where language is located in the brain, so we have a start on solving that particular problem, but the link between the changes in the brain and the changes that you see in his behavior remain to be established.

LEHRER: Is Bill Stannick's case fairly typical of somebody with Alzheimer's disease?

Dr. WHITEHOUSE: I think yes. You see the progressive decline over a number of years that's characteristic. Mr. Stannick maintained a level of awareness of his disease, apparently, from the tape, which is perhaps a little unusual. Fortunately, perhaps, frankly, many people with the desease lose their insight into their condition -- lose the ability to see what's happening to them as they decline, and perhaps that is fortunate.

LEHRER: Is Betty Stannick's prognosis for Bill Stannick pretty much also what will happen? That eventually he'll become bedridden, and then probably die of another disease?

Dr. WHITEHOUSE: The progression of the disease is fairly uniform, but there are changes from patient to patient, so one is always hesitant to make too strong predictions, but basically I'm afraid she is.

LEHRER: Thank you. Robin?

MacNEIL: As we've heard, Alzheimer's places a particularly heavy burden on the families of its victims. The medical community is now trying to help relatives learn to cope. One person involved in that effort is Dr. Miriam Aronson, a gerontologist at the Albert Einstein College of Medicine in New York. Dr. Aronson, why is this disease harder on families than others?

MIRIAM ARONSON: Well, as Betty Stannick said, she is neither a widow nor a wife, and the person she once married and the person she once knew is no longer that same person. It's this prolonged, indeterminate, constant kind of deterioration where you have to watch somebody you love just deteriorate before your very eyes that puts you in a position that you are experiencing grief that's almost unresolvable.

MacNEIL: I see. And what does that do to families?

Dr. ARONSON: I think it really places great stress on families. First of all, it places a great stress on the person who is enduring this for 24 hours a day -- on the caretaker. I think it also places stress between the caretaker, say, and the children, who may not understand quite how bad it is. After all, Dad doesn't look that bad when he comes to visit. And it's hard for them to understand that he can't even as much as understand where the coffee is and take the coffee from the can to the coffee pot without constant reminders.

MacNEIL: She said that her husband was first diagnosed as suffering the onset of a nervous breakdown. Why is diagnosis so difficult in this disease?

Dr. ARONSON: Diagnosis is so difficult because the onset of this disease is very insidious. What happens is you get a symptom here, a symptom there. You kind of can't put your finger on it at the beginning. Somebody begins to perform poorly. You get an accountant who suddenly can't add figures quite the way he used to, yet he does it sometimes and he does some of them. So it's quite an insidious kind of onset. Or you get the executive who starts to miss meeting, miss deadlines, make poor decisions, and people assume, well, it's exhaustion. It's a nervous exhaustion.

MacNEIL: It could be attributed to a whole lot of different things, you mean?

Dr. ARONSON: Absolutely.

MacNEIL: I see.

Dr. ARONSON: And usually attributed to exhaustion, stress, overwork -- all the kind of explanations.

MacNEIL: Is putting the patient in an institution an inevitable stage in it, or can they be treated at home or looked after at home?

Dr. ARONSON: I don't feel that it's always inevitable. I think the course is progressively downhill, but I think whether somebody ultimately goes to an institution or is maintained at home depends very much on what the family resources are, what the family living situation is, who is available to help with that care, etc. If you have a situation where you have a family -- where you have a couple who is in a one-bedroom apartment and you need 24-hour help -- live-in help -- it's not feasible. The spouse has to have a place to sleep; the spouse needs some privacy, so that institutionalization becomes necessary. Or, if you have teenaged children in the house, where this bizarre behavior is a constant source of stress to the kids -- they can't bring their friends into the house; they feel very threatened by the situation, institutionalization may be necessary earlier. On the other hand, if you're in a situation where there's a large home and a lot of resources, and there is room, and 24-hour-a-day help can be engaged and can be maintained, it is possible to maintain people at home.

MacNEIL: What kind of advice do you find families most wanting?

Dr. ARONSON: I think families want advice on a day-to-day basis about how to cope. "What should I do if . . . ? How do I prevent somebody from wandering out of the house so that I can sleep at night? What happens if he says to me, 'What is the matter with me?' What should I tell him? Should I tell him he has a disease, or shouldn't I tell him he has a disease?"

MacNEIL: What's the answer to that question?

Dr. ARONSON: I believe you should tell the patient as much as he wants to know, and I think I find that many of the patients often are very relieved to know that they have a disease. One patient said to me, "Oh, thank God I'm not going crazy." The patients feel exactly the same way about mental illness and being stigmatized. And when we tell them that they have a neurological disease, sometimes this is more comforting to them.

MacNEIL: Finally, briefly, these hospital support groups that are being set up. What can they accomplish?

Dr. ARONSON: Support groups are an extremely important adjunct to helping families to cope. I think there's nothing that can be more helpful to people than being able to share some of their misery with other people and being able to get support through difficult times. It's one thing for me to tell somebody what to do; it's another thing for them to be able to talk to somebody who's in the same situation and says, "Oh, I got through it. This is what I did. This is how I did it." I think support groups are an invaluable part of the management of this disease.

MacNEIL: Well, thank you. Jim?

LEHRER: Dr. Whitehouse, if I read what you said earlier, that you would not adivise to tell the patient that he or she has Alzheimer's disease. Am I wrong?

Dr. WHITEHOUSE: Sorry, Jim, I would agree with Miriam. If I said something that misled you before, my opinion would be the same as Miriam, that to a large extent it's better to tell them.

LEHRER: I was thinking of what you said earlier, that a lot of the people do not know what's happening to them, and you thought that that in some ways that was a better thing.

Dr. WHITEHOUSE: In some sense --

LEHRER: No big deal.

Dr. WHITEHOUSE: Right. No, in some sense it's protective, but my impression -- education and telling the patient and the family as much about the disease, up to their level of understanding, I think, is appropriate.

LEHRER: What's the evidence on whether or not Alzheimer's is hereditary -- whether it's passed on from generation to generation -- children to children, etc.?

Dr. WHITEHOUSE: This is a very important question that Dr. Folstein at Hopkins and others have been interested in, and it's controversial. It's very clear that in some families there is a familial tendency. But the exact mechanism of genetic transmission is unknown, and the percentages range from 10 to 30 percent. People just don't know exactly --

LEHRER: What do you mean, 10 to 30 percent?

Dr. WHITEHOUSE: Perhaps in 10% of cases there is a family history; perhaps more. People are actively investigating that now. Because it is a very important component of the illness.

LEHRER: Dr. Aronson, do you have any view on that?

Dr. ARONSON: Well, I think, again, it is very variable, but the one thing that I would like to do is not to scare people. We know for sure that Alzheimer's is not 100% genetically transmitted. There have been situations with identical twins where one gets is and the other one does not. That's in about 40% of the cases. So one may inherit a predisposition, but there are other factors; as Peter has mentioned, we don't know. Environmental factors, toxic factors, other kind of factors that may supervene and intervene.

LEHRER: Dr. Whitehouse, what are we talking about in terms of time, as to when there might be a breakthrough? I hate to use that word. I know you doctors don't like that, but when there might be some knowledge that could lead to something on this?

Dr. WHITEHOUSE: Well, it's the second question you've asked me along those lines, and I wish I could be more definite. I think the only thing I can do is be optimistic. There are, as you mentioned earlier, increasing efforts along those lines. There are more groups being interested, and I think the more people, the more public funding available, the closer we are. But I can't judge --

LEHRER: Are we talking about a matter of years or decades?

Dr. WHITEHOUSE: I think in terms of making some effect on the lives of patients, it's likely that within the next, let's say, five to 10 years we will have medications that ameliorate, that provide some relief. In terms of cure and even prevention, that is so distant that it's even -- it's just difficult to make a prediction whatsoever.

LEHRER: In a word, would you agree with that, Dr. Aronson?

Dr. ARONSON: I certainly would agree, and I think though that the one thing we do have to keep in mind is the fact that even though there is no cure at this time, we can manage the disease. We can help people to manage. We can help families to manage. We can treat certain symptoms that do arise in the course of the illness. And I think the one thing is that we must not only encourage research and encourage efforts in those areas, but we must encourage families to seek out the kind of help they need with management.

MacNEIL: We have to leave it there, Dr. Aronson. Thank you very much, and thank you, Dr. Whitehouse, for joining us. Good night, Jim.

LEHRER: Good night, Robin.

MacNEIL: That's all for tonight. We will be back tomorrow night. I'm Robert MacNeil. Good night.