Broken Connections, Missing Memories

By J. Madeleine Nash/Chicago

Q. Many older people, noticing they have trouble remembering things, are petrified that they may be developing Alzheimer's. Are their fears warranted?

A. One of about every 20 patients I see at Rush-Presbyterian-St. Luke's Medical Center could be described as an Alzheimer's-phobic. My rule of thumb is that the person who thinks he or she has Alzheimer's doesn't. Almost invariably, the Alzheimer's patient is brought in by a family member. Either the patient is not aware of the problem or just can't get it together to make an appointment with a doctor.

Q. But why do so many older people seem to have trouble with memory lapses?

A. There's something known as age-associated memory impairment. It sometimes takes the form of absentmindedness, like misplacing things. The typical story is, you come into the house, you put your briefcase down, and you're distracted by something. Maybe the kids are having a fight. So you go break up the fight, and then you can't remember where you put your briefcase. Another common difficulty is thinking of names, particularly proper names. I myself have always had difficulty with names, and I've always been slightly absentminded. So when a person comes in with complaints about memory, I can say with a great deal of honesty that we both have the same problem, only I have it worse.

Q. Have you ever tried to train yourself to have a better memory?

A. Most memory tricks have to do with connecting words to visual images. When I've tried it, I couldn't remember the visual image I was supposed to recall!

Q. What is usually the first symptom of Alzheimer's disease?

A. The typical patient starts with memory problems and then deteriorates into more general confusion. A truck driver may keep delivering things to the wrong place, or a bookkeeper may not be keeping the books right anymore. Motor skills are usually retained longer, although certain patients will have difficulty early on with tasks like using a screwdriver or tying shoelaces.

Q. Why is memory the first to go?

A. In Alzheimer's disease one of the most profoundly affected areas of the brain is the hippocampus. Memories may not actually be stored in the hippocampus. Instead the area may act as a retrieval mechanism for reaching those memories.

Q. Why then do Alzheimer's patients often retain vivid memories of childhood events?

A. There is reason to believe that recently learned information is not dealt with in the same way as information learned a long time ago. So, even though the hippocampus may be involved in learning something initially, as time goes on, that information may be stored or processed in other areas of the brain. This may, in fact, be the explanation for why Alzheimer's patients initially have problems learning and remembering new things, but are better at remembering old things.

Q. What exactly does Alzheimer's disease do to the brain?

A. People argue about this. There are billions and billions of cells that make up the brain, like the bricks that make up a house, and for years it was thought that Alzheimer's disease was caused by a loss of these cells. Some recent studies suggest, however, that what is important may not be a loss of cells so much as a shrinkage. Each brain cell has a central body, attached to which are the axons and dendrites. The simplest way to think about it is that the dendrite is the part of the cell that receives information, and the axon is the part that sends information out. Maybe it's these axons and dendrites that shrink.

Q. The axons and dendrites connect one brain cell to another. Is this why they are central to memory?

A. When you learn something and retain it, something must change in the brain. Most people now believe that what happens is that certain connections between brain cells and groups of brain cells become enhanced. So it's reasonable to believe that in an illness like Alzheimer's these connections may be the first things to be disrupted.

Q. What distinguishes an Alzheimer's brain from a normal brain?

A. There are two pathological hallmarks of Alzheimer's: plaques and tangles. A plaque appears to be a conglomeration of deteriorating nerve-cell terminals. A tangle, on the other hand, is a conglomeration of deteriorating neurofilaments, little tubes that traverse the central body of the brain cell. Sometimes the cell dies, and all that's left is the tangle. The question is, Which abnormality is key?

Perhaps the answer is neither. If you just looked at heart tissue after a heart attack, you would see scarring. You wouldn't realize that what caused the heart attack was the fact that a blood vessel got blocked. So in Alzheimer's disease maybe we are seeing only the second or third or fourth steps; maybe we have yet to locate where the real action is. In other words, the plaques and tangles may just be the graves of brain cells and may not speak to what caused their deaths.

Q. Do you have any favorite theory about what causes Alzheimer's?

A. I can honestly say that when it comes to the cause of Alzheimer's, I'm an agnostic. I'm waiting to find out. One theory is that if we all lived to 120, we'd all get Alzheimer's disease. I think if you told people they would get Alzheimer's when they were 120 years old, they wouldn't be terribly upset. The real question, then, is, Why do some people get Alzheimer's at age 50, 60, 70, 80?

Q. Is Alzheimer's disease really as frighteningly common as it appears?

A. A diagnosis of Alzheimer's used to be reserved for younger people who became prematurely senile. Senility in older people was believed to be due to something else, like hardening of the arteries. But now we know that the difference between senile old people and normal old people is that one group generally has Alzheimer's and the other doesn't. We also know that Alzheimer's becomes more common as people grow older, and since the population of this country is aging, we are seeing more patients with Alzheimer's. A colleague of mine estimates that 10% of people over 65 have Alzheimer's, and past the age of 85 the number may approach 50%. So sometime in the next century, when we have 80 million people in this country above the age of 65, we might have 8 million Alzheimer's patients.

Q. Last year a woman diagnosed with Alzheimer's killed herself with the help of a "suicide machine." What was your reaction?

A. That incident was unfortunate because it focused attention on death in mildly affected patients, whereas the biggest problem for those of us who care for Alzheimer's patients is the prolongation of life in advanced stages of disease. The question for us is, When patients inevitably lose the ability to swallow, should we advise their families to put in a stomach tube to feed them? My own personal advice is that they shouldn't. If these patients could come out of their state for a moment, knowing they would return to a state of absolutely no comprehension and no hope, would they want to be kept alive? Would I want to be kept alive like that? It's not being kept alive as a human being, but as a shell, and that seems inappropriate to me. The truth is, the person is gone and doesn't really care.

Q. What's hardest for families who are trying to cope with an Alzheimer's patient?

A. The realization that the person is different. For all of us, our definition of personhood to some extent involves thinking and understanding. I'm not saying that the person with Alzheimer's is no longer a human being. But it's not like losing a leg. When you lose a leg you're still the same person you were before. Here, as the brain fails, the person becomes like a shadow, like a reflection in the pool that is very, very blurry.

Q. What advice do you have for families struggling with an Alzheimer's patient?

A. People frequently use their children as a model for dealing with an Alzheimer's patient. But to treat patients as you would a child, to try to teach them and train them, is absolutely counterproductive. I tell families not to be bothered by what the Alzheimer's patient does if it's just a bother in theory. The best example of this is the patient who paces or talks to the television set, or who does a task over and over again. Maybe they'll keep folding or unfolding laundry, or maybe they like to wash the same dish 20 or 30 times. Family members tell me it's driving them crazy. My answer is, What are you going to have this person do instead of folding and unfolding laundry? Are they going to read Plato? Are they going to go to a play by Shakespeare? What's the big deal?

Q. Is there anything an early-stage Alzheimer's patient should not be allowed to do?

A. The one thing I'm adamant about is driving. We've done a study where approximately a third of our patients, if we look six months back, have either . been involved in an accident or have had a moving violation. So generally we advise that Alzheimer's patients shouldn't drive. Sometimes, if this upsets the patient, I tell the family, Put the car away and say it's been stolen. Disconnect the battery and say the car is not working. Steal the keys, if you have to.

This is what I call creative lying, and again, the wrong model is child rearing. If young children do things you don't like, you don't lie to them about the reasons, because, after all, you are trying to teach them the correct way to behave. But an Alzheimer's patient is not learning anymore, and so the issue for the family is not training or teaching, but surviving. I don't see the harm in little white lies, or even not-so-little white lies, if they maintain a certain degree of peace in the family unit.

Q. How hopeful are you that ways of treating Alzheimer's disease will be found?

A. Currently we have no proven treatment. I really don't know, but I think that in the next few years we could begin to have reasonable palliative treatments, meaning medicines that improve the symptoms of the patients and make them function better. But there's no good reason to believe that treating the symptoms will prevent progression of the disease. If people are in pain from cancer, they're clearly better off if you treat the pain. But they still have the cancer.