Alzheimer's Steals More Than Memory
- November 2, 2004
Alzheimer's Steals More Than Memory
By Denise Grady
It happened without warning, early one day last summer as they prepared to go out. Gloria Rapport's husband raised his arm to her, fist poised."He was very close to striking me," she said.What had provoked him? "Nothing," she said. "I asked him to get in the car."Mrs. Rapport's husband, Richard, 71, has Alzheimer's disease. His forgetfulness and confusion began about nine years ago, not long after they married. More recently, emotional troubles have loomed. Anxiety came first: he suddenly feared being left alone in the house. Outbursts of anger followed. The man she had always known to be kind and gentle could in an instant turn "cunning, nasty, aggressive, menacing," she said."The behavioral changes I've seen are absolutely frightening," she said. "I understand now why so many families institutionalize someone, because I was afraid of him."Though memory loss is the best-known Alzheimer's symptom, the disease can also cause psychiatric problems that lead to profound changes in personality, mood and behavior. People who were happy and good-natured for most of their lives suddenly become fearful, depressed, deluded or angry, sometimes even violent.Many families hide such symptoms, and perhaps as a result, psychiatric problems were long thought to affect only a minority of people with Alzheimer's disease or other types of dementia.Only recently has it become clear that emotional and behavioral troubles are nearly universal among people with Alzheimer's disease, and the problems are frequently intractable and more upsetting to families than the mental slowing. Depression and apathy are the most common psychiatric symptoms. But agitated, aggressive and psychotic behaviors are a leading reason Alzheimer's patients are put into nursing homes. (The other is incontinence.)"They are extraordinarily distressing and wearing on caregivers," said Dr. Constantine Lyketsos, a psychiatrist and Alzheimer's expert at Johns Hopkins.More than four million Americans have Alzheimer's disease, and the number is expected to increase as the population ages.Dr. Lyketsos said that doctors had become increasingly aware that elderly people who suddenly showed signs of mental illness might actually have Alzheimer's disease, though in the past they might have been given a diagnosis like "late-life psychosis," depression or nervous breakdown.Mrs. Rapport said: "Most families won't talk about it. I equate this disease to how leprosy used to be. We've lost good friends, and we have family members who won't have anything to do with us. I think they're afraid of it, and there's a real stigma that the person is crazy. I think it's why a lot of families hide people away who have it."The symptoms distress not just families, but the patients themselves."If your moods are labile or you get anxious and scared, there's a fair bit of suffering that goes with that," Dr. Lyketsos said. "If you have visions, or develop ideas that people are trying to steal from you or hurt you, there's a fair bit of suffering."The emotional disorders can be difficult or impossible to treat. There is no drug specifically approved for psychiatric problems in Alzheimer's patients, so doctors try to treat the symptoms, using drugs meant for other illnesses. They prescribe a wide array of medicines, including antidepressants, antipsychotics used to treat schizophrenia and stimulants and drugs approved for anxiety, epilepsy and memory impairment. Sometimes the drugs seem to work, sometimes they do not.Dr. Lon Schneider, a psychiatrist who studies and treats Alzheimer's disease at the University of Southern California, said: "Whenever you see a long list of drugs of different classes, you know there's no good treatment. You get a high degree of uncertainty, and companies hyping their antipsychotics."Over all, Dr. Lyketsos said, the effects of the drugs are moderate. But he added that depression seemed to be the most treatable symptom, and could be eased in half to two-thirds of Alzheimer's patients with drugs like Prozac, which enhance brain levels of the chemical serotonin.But some psychiatric drugs can have troubling side effects, particularly antipsychotics, which may increase the risk of stroke, diabetes, weight gain, high cholesterol, sleepiness and Parkinson's-like movement disorders.There is "substantial and increasing controversy" about the use of antipsychotics and other drugs to treat behavioral problems in people with dementia, Dr. Schneider said. Twenty percent of all antipsychotic prescriptions are for the elderly, but there is no good evidence of their effectiveness, he said, adding that the results of a government-sponsored study are due next year.Meanwhile, behavior therapy and activity programs at adult day care centers may work at least as well as drugs in some patients, and families are urged to try them first. Teaching relatives and the nursing home staff what to expect from a person with dementia and how to avoid confrontations can help to keep the peace."There's a tendency for us to want to correct people who are demented," Dr. Schneider said. "You don't do that."Researchers think the psychiatric symptoms result in part from brain damage, as the disease eats away at nerve centers that regulate mood, perception and the ability to control impulses. But some problems may also arise from patients' anguish and frustration over their increasing confusion and inability to function.Apathy, depression, irritability, sleep disturbances, agitation and aggression are common. Anxiety, delusions, paranoia and hallucinations may also occur, as well as disinhibition, or loss of impulse control. Patients sometimes think family members are impostors or intruders, or are out to harm or rob them. They may accuse spouses of cheating and slap, push or shout at relatives.Testifying in March before a Senate hearing on violence among people with dementia, Dr. Lyketsos said that every year, about 15 percent to 18 percent of dementia patients had physically violent outbursts. They can be set off by changes in routine or even a room that is too hot or cold, or discomfort from dental problems or illnesses like colds or bladder infections that patients may not be able to interpret or express. Patients who can no longer bathe or use the toilet without help often misinterpret and resent efforts to help them.Most of the incidents are minor and no one is seriously hurt, Dr. Lyketsos said."In fact, most of the time we never hear about it, sometimes because the caregivers feel embarrassed or ashamed to report it, or may blame themselves," he told the committee. But on rare occasions, real harm is done.Last year, a man at an assisted living center in Eugene, Ore., shot and killed his wife, an acquaintance and himself; all three had dementia.Dr. Jason Karlawish, a geriatrician at the University of Pennsylvania's Institute on Aging, said one of the first things he advised families with Alzheimer's patients was to get rid of any guns in the house.Mrs. Rapport, who lives in Williamsville, N.Y., a suburb of Buffalo, gives her husband a drug called Seroquel to decrease agitation. It is an antipsychotic made by AstraZeneca, and is generally used for schizophrenia. The drug was prescribed by Dr. Pierre Tariot, a professor of psychiatry, medicine and neurology at the University of Rochester, who studied it for 10 weeks in 333 Alzheimer's patients and found that a high dose, 200 milligrams a day, reduced agitation without severe side effects.Mrs. Rapport said: "I think the drug is absolutely wonderful. It brought him back to the same pleasant person he's always been."Mr. Rapport has been taking Seroquel for about a year. Several times, he has become combative again, and so Mrs. Rapport increased the dose. Without the drug, she said, she would probably not be able to keep her husband at home.Each family seems to have a different - and changing - recipe of drugs. Gertrude Affannato, 82, of Philadelphia was taking a memory drug, Aricept, and an antidepressant, Celexa, but a few years ago, as her dementia progressed, she became lethargic and reluctant to leave the house. So her doctor, a specialist at a dementia clinic, added vitamin E and Ritalin, a stimulant."It seemed to get her out of her shell and get a spark out of her," said her husband, Louis, also 82. "We were able to go out and do things."But recently, he said, "she started to get belligerent with me at home and with some of the patients at the day care center.""She never said a foul word in her life, and now, the least little thing and she'll curse you out," he said. She sometimes hits or pinches him when he tries to bathe her, and he said he worried that she would strike another patient or a nurse, and be thrown out of day care."Without that," he said, "I don't know if I could handle it."Their doctor reduced the Ritalin, and Mrs. Affannato seems to be getting along better with the other patients, he said. But the lethargy and apathy have returned. As soon as she gets home from day care in the afternoon, she wants to eat dinner and go to bed. Then she wakes at 3 or 4 a.m., and wants him to get up, too."This is one of the toughest jobs I've ever had to do," he said.Bob Simons, of Westmont, N.J., took care of his wife, Sylvia, 78, a former kindergarten teacher, at home for three years after her Alzheimer's disease was diagnosed."My wife is apathetic," Mr. Simons said during a telephone interview in August. "She's not depressed. Nothing makes any difference to her. She can spend hours in the bathroom examining all the jars and bottles she has on the counter. Once, I waited to see how long she would stay in there, and it was eight hours. She didn't come out for food or anything."At times, Mrs. Simons suffered from hallucinations, imagining there were strangers in the house. She became careless about her appearance and sometimes wanted to sleep in her clothes instead of changing at bedtime."Sometimes I have to physically push her down on the couch and say, 'Take off your blouse, take off your skirt,' '' Mr. Simons said, "and she'll say, 'Oh, I was talking to the nice Bob before, now I'm talking to the mean Bob.' " "It's like I'm married to a different woman," he said.She was taking several medications meant to slow memory loss, though Mr. Simons said he did not know whether they were helping."She might be the same way if I took her off all these drugs, but you're afraid to take a chance," he said. "If she had a good day when I waved a rubber chicken over her head, I'd be waving a rubber chicken over her head every day."But Mrs. Simons seemed to get worse each day, he said, adding that he might eventually have to put her into a long-term care facility.In September, he did.It is a decision that most spouses dread, but must consider.Mrs. Rapport said: "I'm happy because we can still have a life together - a different life. We still have the companionship. I know Richard would do the same for me. It's part of our journey together. There are no guarantees. I want to keep him home as long as I can."
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