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Understanding Dementia: A Q & A with Dr. Robert Roca

Q: What is dementia?

A: Dementia is a syndrome of global decline in thinking ability in the presence of clear consciousness. It is characterized by loss of memory, difficulty in abstract thinking, difficulty with language and at some point disturbing changes in behavior. And these are the features that break the backs of care givers and often lead to institutional placement.

Q: Is age a risk factor?

A: The risk of dementia increases with age. The prevalence of dementia is 5 to 10% among persons over 65, and as high as 45% for persons over 85. Though it becomes more prevalent with age, people can develop dementing illnesses as early as the 30's or 40's.

Q: Does Alzheimer's occur more in men? women? specific ethnic groups?

A: Being a woman seems to be a risk factor for Alzheimer's disease. It is primarily a disease of the elderly so you are going to see more of it in countries where there are more elderly people.

Q: Is Alzheimer's hereditary?

A: There are rare familial cases of Alzheimer's associated with abnormalities on chromosomes 1, 14, and 21. The more common late onset Alzheimer's is sporadic and nonfamilial but does seem to be linked to chromosome 19 and the gene that codes for apolipoprotein E.

Q: Do people die from dementia?

A: It's more correct to say that people die from the complications of dementia. People die from infections, fractures, and complications of immobility.

Q: How does one know whether the forgetfulness of an elderly family member is Alzheimer's, or normal aging?

A: It's sometimes not an easy distinction to make but forgetfulness that normally accompanies aging is usually a problem of retrieval. The memory is in there somewhere, but you have trouble retrieving it. For example, it may take a moment to remember somebody's name, or where something was placed, but eventually you do remember the name or place. And that in fact is something people in their 40's or 50's begin to report. In contrast with Alzheimer's dementia, it's more fundamentally a problem of encoding. The memory was never really firmly established, so it's not there to be retrieved. Hints and clues don't help.

Q: So no matter how long it takes or how hard you try it can't be retrieved?

A: It's not there to be retrieved, and in the worst cases something that happened only moments ago will just not be there. Efforts to prompt somebody with cues won't work.

Q: So a person with Alzheimer's or dementia lives pretty much in the present?

A: Very much in the present.

Q: Is there a realization of the decline on the part of the patient?

A: It's fairly common for people to be aware that there's something wrong with them early in the course of the disease. It's a painful thing to acknowledge. Other people are completely unaware. Dementia is particularly difficult for individuals who remain acutely and painfully aware of difficulties as their impairment worsens.

Q: Is depression a secondary factor? Are there other psychiatric complications?

A: There are. In addition to the memory and thinking difficulties there are a whole host of behavioral and other psychiatric problems in Alzheimer's. People tend to be depressed. As many as 20-25% of persons with Alzheimer's develop major depression and a large number of others develop less severe depressive symptoms. The risk of depression is related to the level of awareness of the deficits. In addition to depression people develop symptoms of aggressiveness, often directed at care givers. They may develop inappropriate sexual behaviors and other behaviors that are completely out of character. They may become crude and profane in language. These are often the problems that bring people to Sheppard Pratt for treatment. It's not so much the forgetfulness that people find it difficult to deal with, it's more the changes in behavior.

Q: In diagnosing Alzheimer's, do you do a brain imaging scan?

A: There is no universally accepted place for brain imaging in the positive diagnosis of Alzheimer's disease. It is used mostly now to rule out other conditions. In the future, so called functional imaging may play a positive role.

Q: How is a person with dementia evaluated in the hospital?

A: There are three approaches that are helpful in guiding the evaluation of these patients: the empathic, behavioral, and medical approaches. The empathic perspective invites us to put ourselves in the shoes of this person, and imagine what it would be like to be forgetful and bewildered, constantly living in the present, surrounded by circumstances that are at times threatening. We ask, "How might we behave in those circumstances and what might be done to bring about improvement?"

Q: So basically you are looking at the environment?

A: The environment and the individual, the individual's habits, preferences, and vulnerabilities and how might the environment interact with the person in such a way as to cause these catastrophic eruptions. I had a patient once who lived in a nursing home. He was a former amateur boxer who started punching nursing staff, and in some cases, other residents. When we interviewed him we found out he thought he was home and couldn't figure out who these intruders were; these strangers coming into his bedroom all the time. You can easily understand how somebody who had that interpretation of the circumstances might defend himself with his fists. When we understood that about him, we could recommend that we have as few care givers as possible in the room with him so he would have maximum opportunity to recognize people. We advised the nursing home staff not to assume that he knew he was in a nursing home. They needed to appreciate the fact that he thought he was at home to understand the behavior and to control the outbursts. He needed to be reminded frequently that he was in a nursing home and that they were there to help him that they were not strangers or intruders. That's what I mean by empathic perspective; you put yourselves in the shoes of this person and imagine why the person might be responding this way.

Q: Does that involve taking an extensive history?

A: It requires that you know the person well. It's not always easy to do, you need to know the person, family members, other people who have known the person for awhile.

Q: And the behavioral perspective?

A: The behavioral perspective looks at the behavior itself and the environment. Is the environment serving as a model for the behavior, or reinforcing the behavior problem? If it is, you can change the environment to change the behavior. In a nursing home, for example, we were asked to evaluate a person who was walking out of the building several times a day. We found out her room was situated right next to the door, and she was sitting right outside her room all day watching people go in and out of the front door. It didn't take too much insight to realize that she was imitating people she was watching go in and out of the door. We suggested relocating her to a room down the hall. When she was moved, the behavior stopped. That was an obvious intervention. It involved just looking at the behavior and the environment, and understanding the behavior as an imitation of what she was seeing. Another instance that's not uncommon is for the patients to yell and bang on things. It's not unusual when people do that for the staff to rush over and see what's wrong. There are times when it appears the yelling and banging is rewarded by attention. In those circumstances it is often helpful to advise care givers to identify other behaviors to reward and to avoid reinforcing behavior that is found troublesome. So again we're changing the way the environment responds to the person.

Q: And the medical approach?

A: The medical approach asks the physician to look at the behaviors as symptoms or complications of a medical or psychiatric illness and treats that illness to ameliorate the behavior. Oftentimes when people who are demented get what otherwise might be an insignificant infection or start on new medication there will be a behavior change that can be understood as a side effect of the medication or a byproduct of a minor infection. Treating the infection will sometimes bring a behavioral improvement.

Q: Caring for an Alzheimer's patient is described as very stressful for the family members.

A: It is stressful and part of the problem for care givers is there is a sense of therapeutic futility that a lot of physicians convey about dementia. There is a lot that can be done to ameliorate behavioral symptoms, and there are other sources of support for care givers. The Alzheimer's Association is a particularly good support for people who are in the care giving world, whether the disease is Alzheimer's or another form of dementia.

Q: Do those behavior changes essentially bring about the crisis of a magnitude that would encourage the care giver to seek treatment?

A: It's very frustrating when people are fighting with care givers, when they're resisting the care they need. They may throw food. They may accuse care givers of stealing money. They may become paranoid or aggressive. These symptoms are hard to bear and sometimes lead to institutionalization.

Q: What type of institutional placement are we talking about for a person with Alzheimer's who has become impossible to care for at home?

A: Mainly nursing home placement, but often, as an intermediary measure, they need to be hospitalized in a general medical center of a psychiatric hospital for an evaluation. Sometimes those symptoms can be treated effectively in the hospital and the person can go back home. That's really the aim when people come into a psychiatric unit. For example, when symptoms are based in persecutory delusions, the behavior often can be treated with medications that treat paranoid delusions. There are medicines that are sometimes effective in the management of aggressiveness or the management of depression and anxiety. So when somebody comes in for treatment for one of these behavioral psychiatric complications of dementia, they are looked at comprehensively in an effort to understand what the origins of the behavior are.

Q: Are there treatments? Is there a cure?

A: Dementia is caused by many illnesses. It's not a normal part of aging, it's always a product of disease. Alzheimer's disease is the most common cause of dementia but there are other dementing illnesses. The most common is stroke. Other medical illnesses that cause dementia are severe thyroid disease, vitamin deficiencies, a whole host of inflammatory conditions, brain tumors, and subdural hematoma. There is a long list of things that can cause dementia. And that serves to emphasize the point that if somebody has signs and symptoms of dementia they need to be evaluated, worked up, to determine the cause of dementia because in some cases there is in fact potentially curative treatment. But for the most prominent causes of dementia there is no cure. The treatment is aimed at minimizing the disability rather than curing the disease.

Q: Are there any drugs currently available or in the research phase for treating, arresting, or ultimately curing Alzheimer's?

A: There are currently two drugs approved for use in Alzheimer's disease: tacrine and donepezil, also known as Cognex and Aricept. They are modestly effective, although in individual cases they may be dramatically helpful. Unfortunately, they work on a peripheral aspect of the disease, not on a fundamental aspect of the disease process. They are the only available treatment, so everybody who has access to them tends to want to give them a try. They are primarily for cognitive aspects of Alzheimer's disease, most often in terms of modest improvement of daily functioning. They don't tend to do much in the way of improving memory skills or behavior. But families may report things like, "Mom can now dress herself."

Q: How do they work?

A: Physiologically, they inhibit the breakdown of the brain chemical acetylcholine that is a critical ingredient in memory function. The problem in Alzheimer's disease is that the cells that produce acetylcholine are devastated so that, as the disease advances, the cells that produce this chemical have largely died off. But early in the disease, when the devastation is not as great, there is still a fair amount of acetylcholine in the brain, and these drugs prolong the life of acetylcholine. In that way they promote enhanced thinking ability and memory function. Unfortunately, the use of these drugs is a matter of treating the problem after the horse is out of the stable.

Q: Are there any other promising drug treatments?

A: There is evidence that high doses of vitamin E may help patients stay out of institutions for some period of time. We're talking about 2000 units per day for people who already have diagnoses of Alzheimer's Disease, and it seems to be relatively free of side effects.

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Last modified: Thursday, April 17, 2014

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