Alzheimer's Steals More Than Memory
From: David James Polewka (joseywales_at_outlaw.nospam)
Date: 11/03/04
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Date: Wed, 03 Nov 2004 05:17:25 GMT
http://www.nytimes.com/2004/11/02/health/02alzh.html?8hpib
Alzheimer's Steals More Than Memory
By DENISE GRADY
Published: November 2, 2004
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 frighten-
ing," 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,
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 anti-
psychotics."
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 Astra-
Zeneca, and is generally used for schizophrenia. The drug
as 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."
=========================
"Endeavor to persevere"
=========================
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