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Alzheimer's Steals More Than Memory
NY Times ^ | November 2, 2004 | DENISE GRADY

Posted on 11/02/2004 10:42:07 AM PST by neverdem

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."

TOPICS: Culture/Society; Front Page News; News/Current Events
KEYWORDS: alzheimersdisease; dementia; healthcare; mentaldisorders; mentalhealth; violence
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To: neverdem
My prayers for anyone with a family member suffering Alzheimer's. Truly one of the cruelest of diseases. My grandmother and both of my wife's grandmothers died from it.

This thread caught my eye because I had just gotten off the phone with my wife. She hosts a Bible study in our home every Tuesday morning and this morning an elderly lady who's been visiting our congregation showed up. [I'd be interested to know what first brought her since our worship service is decidedly contemporary in style. She keeps coming because she said she could tell our congregation was genuine in our faith...] She told my wife she's been diagnosed with Alzheimer's and it saddens her because she's been forgetting things about her faith. Sorry, something in my eye...

My wife told her that even though she might forget, the Holy Spirit doesn't and he knows just how to pray for her even when she doesn't. She seemed to get a lot of comfort from that. I think I'll change from my usual seat this coming Sunday and try to get to know her a little better.

21 posted on 11/02/2004 11:25:39 AM PST by LTCJ (CBS, all your Boyd Cycles are belong to us.)
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To: nmh

Take another look a your post #3.
I feel my post was in good order.

22 posted on 11/02/2004 11:27:09 AM PST by Roccus
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23 posted on 11/02/2004 11:31:33 AM PST by Stonewall Jackson (Eagle Scout class of 1992.)
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To: neverdem

We're just about to complete a home addition to house my mother-in-law, who has alzheimers. We should have her with us by Thanksgiving. We'll keep her as long as we can. My wife's grandmother also had the disease..... so needless to say.... my wife is researching anything she can do to make it skip her.

24 posted on 11/02/2004 11:32:29 AM PST by kjam22 (What you win them by, is what you win them to)
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To: nmh

Commendations to you and your family for the care you gave your relatives. OTOH, there are people who, for health reasons, cannot care for an Alzheimer's patient in the home. Everyone that I know kept their family member at home as long as possible. I don't know anyone who "farmed" anyone out at a "warehouse."

I've cared for a number of Alzheimer's patients, and they are different at different stages. Some do become violent, and I wonder if sometimes that's because of minor strokes that go any case, it's an organic disease, and can affect different areas of the brain in different people. When a small, frail wife has a large, aggressive husband with Alzheimer's, she can be harmed, particularly after he no longer recognizes her.

25 posted on 11/02/2004 11:34:49 AM PST by Judith Anne (The last time Kerry said "Reporting for duty!" he betrayed his comrades, his flag, and his country.)
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To: neverdem
My gradmother, and her father, both had Alz. It frightens me that it could be passed down to myself, or my children.

I've heard blueberries have shown promise in brain related health. Needless to say, I'm eating them daily. Just hope my skin doesn't turn blue ; )

26 posted on 11/02/2004 11:35:08 AM PST by softengine (Correlate everything. Practice critical thinking. Don't be a sheeple.)
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To: kjam22

I've heard that green tea twice daily is very helpful, although I haven't come across the research.

27 posted on 11/02/2004 11:35:56 AM PST by Judith Anne (The last time Kerry said "Reporting for duty!" he betrayed his comrades, his flag, and his country.)
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To: nmh; Roccus

Of all things to be nasty about - ALZHEIMERS is not it! Save the ugly for the enemy. We are not the enemy. And God bless and keep each of you who have cared for and loved a family member stricken with "A"

28 posted on 11/02/2004 11:36:47 AM PST by daybreakcoming ("The American press is all about lies! All they tell is lies, lies and more lies!",,,,,,Baghdad Bob)
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To: nmh
Alzheimer's patients aren't violent. If they are may I suggest they are merely angry liberals who've forgotten why they are angry at EVERYONE?

With an attitude like this, one hopes none of your relatives will have to suffer under care.

29 posted on 11/02/2004 11:37:43 AM PST by Doctor Stochastic (Vegetabilisch = chaotisch is der Charakter der Modernen. - Friedrich Schlegel)
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To: Judith Anne

Thanks... I'll pass that along to her.

30 posted on 11/02/2004 11:37:59 AM PST by kjam22 (What you win them by, is what you win them to)
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To: Doctor Stochastic

Sad thread ping.

31 posted on 11/02/2004 11:46:44 AM PST by RadioAstronomer
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To: neverdem

My boyfriend had atypical Parkinson's Disease. It started when he was in his forties and developed with a mixture of Parkinson's and Alzheimer's symptoms, also including paranoia and, at times, violent outbursts. He died after twelve years -- from a brain tumor that hadn't shown up on MRVs a year earlier. I empathize with all who have to care for these patients. And decisions about what to do become more complicated still when the individual is not married. Note that all these stories involve people who -- for all their suffering -- are lucky enough to have a devoted spouse who will devote himself totally to their welfare. When you are not married to the ill person and have to earn your own living, the choices become even more difficult.
I had my boyfriend committed once because he was threatening suicide -- and seemed to want me to take this action. After that, however, he became more secretive. Drug addicts preyed on him, pretending to be his friends and running up enormous credit card bills ($67,000)by taking out cash advances. At times he wanted to be rescued by me, at other times he insisted on seeing these people and there was nothing I could do. He punched a stranger on the street and knocked him down. When I let him stay at my apartment, he could not be left alone for an hour -- started fires,called our friends to complain that I was holding him prisoner, and so on. Unlike the patients in the article, he still youthful looking and powerfully built, so if his medication was working it wasn't always obvious how sick he was. I lived in terror that he would end up arrested.
Though it was clear to me that he was not competent, he managed to pull himself together during visits to his doctors and pass their tests, so he was not considered a candidate for residential care. He could turn on the charm and seem like the most reasonable person in the world. I was the villain for thinking it might be necessary to hospitalize him.
I'm sure this case isn't unique -- and in the future,with so many adults who are single, divorced or otherwise alone, the problem will become more acute.

32 posted on 11/02/2004 12:16:41 PM PST by joylyn
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To: michaelbfree

Sorry to hear about you mother. We went through a similiar experience with my grandmother a few years back.

33 posted on 11/02/2004 12:30:44 PM PST by proudpapa (of three.)
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To: joylyn

Your love and care were phenomenal, and God will surely bless you for it.

34 posted on 11/02/2004 12:35:38 PM PST by Judith Anne (The last time Kerry said "Reporting for duty!" he betrayed his comrades, his flag, and his country.)
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To: softengine; All

I happen to specialize in LTC insurance. If any freepers out there are looking for non-biased info on LTC insurance you can reply privately.

35 posted on 11/02/2004 1:43:44 PM PST by proudpapa (of three.)
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To: Judith Anne

That's nonsense.

It will all depend of their priorities.

When the age, they shouldn't be surprised when "family" doesn't have the time for them.

I hear "state homes" are horrendous. THAT is where they will wind up.

36 posted on 11/02/2004 1:54:25 PM PST by nmh (Intelligent people recognize Intelligent Design (God).)
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To: Doctor Stochastic

Many of my relatives had Alzheimer's and WE TOOK CARE OF THEM. We didn't farm them out to an old age WAREHOUSE to be neglected and die and NONE of them were violent.

How dare you point your finger at ME.
OTOH, you sound like the typical cantankerous hypocrite.

37 posted on 11/02/2004 1:54:57 PM PST by nmh (Intelligent people recognize Intelligent Design (God).)
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To: daybreakcoming

Many of my relatives had Alzheimer's and WE TOOK CARE OF THEM. We didn't farm them out to an old age WAREHOUSE to be neglected and die and NONE of them were violent.

How dare you point your finger at ME.
OTOH, you sound like the typical cantankerous hypocrite.

What is really in a persons heart comes out through this terrible disease.

38 posted on 11/02/2004 1:55:44 PM PST by nmh (Intelligent people recognize Intelligent Design (God).)
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To: nmh
Many of my relatives had Alzheimer's and WE TOOK CARE OF THEM. We didn't farm them out to an old age WAREHOUSE to be neglected and die and NONE of them were violent.

I don't believe you.

39 posted on 11/02/2004 1:59:02 PM PST by Judith Anne (The last time Kerry said "Reporting for duty!" he betrayed his comrades, his flag, and his country.)
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To: neverdem

Tragic and sad but very real. My husband's grandfather, Granpa George, had Alzheimers. He had some occasions where he burst out at Grandma. Part of it was frustation and loss of memory. He was agitated for a time. One he progressed beyond that, the episodes stopped. It's hard as a family to see someone forget them. Grandma developed it later. They always cooked in aluminum cookware...don't know if that is a factor, but I threw away all my aluminum cookware.

40 posted on 11/02/2004 2:12:18 PM PST by jcmfreedom
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