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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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The Long Goodbye, a series of articles dealing with issues related to Alzheimer's disease.
1 posted on 11/02/2004 10:42:08 AM PST by neverdem
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To: neverdem

My mother used to make a nice ginkgo tea for her patient. The family thought he was getting too well because he started asking questions about his money. Some folks benefit from parents being senile.

2 posted on 11/02/2004 10:44:33 AM PST by cyborg
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To: neverdem
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?
3 posted on 11/02/2004 10:45:35 AM PST by nmh (Intelligent people recognize Intelligent Design (God).)
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To: neverdem

My grandmother atacked my then 4 year old son twice. Once with a large book and then with a pair of scissors. She was not provoked either. That is when I knew I could no longer care for her in my home. Alzheimer's is one of the most evil and vilest diseases out there.

4 posted on 11/02/2004 10:47:17 AM PST by PleaseNoMore
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To: PleaseNoMore

My mom has encountered problems with patients before. They revert back to their childhood. If their childhood was violent, then it's likely the patient will act out. It's take real skill and talent to deal with them.

5 posted on 11/02/2004 10:48:45 AM PST by cyborg
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To: PleaseNoMore; nmh; fourdeuce82d; El Gato; JudyB1938; Ernest_at_the_Beach; Robert A. Cook, PE; ...

FReepmail me if you want on or off my health and science ping list.

6 posted on 11/02/2004 10:48:48 AM PST by neverdem (Xin loi min oi)
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To: neverdem

My mother was diagnosed with Alzheimer's about 4 years ago. Her's ended up being a very aggressive form. I went through hell for 2 years....Alzheimer's victims tend to take it all out on their closest and most loved ones. My mom is currently in a nursing home and the worst is over. By that I mean the violent, aggressive outbursts that break one's heart. She remembers basically nothing other than her childhood. She still thinks her parents are alive even though they died over 20 years ago. I, my cousin, her brother and a few close friends are the only people she remembers. She will, sometime in the near future, even forget us. This is the most excruciating, heart breaking thing I have ever gone through. My mother was a dynamic individual, a business leader who was elected business person of the year in our community 25 odd years ago. To see what this disease does is absolutely the saddest thing I've ever witnessed. My heart goes out to all Alzheimer's victims and expecially their families who must cope and love the victim in spite of the progression of the disease.

7 posted on 11/02/2004 10:48:58 AM PST by michaelbfree
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To: nmh

I hope that was sarcasm.

8 posted on 11/02/2004 10:49:51 AM PST by PleaseNoMore
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To: nmh

That's not appropriate.

9 posted on 11/02/2004 10:54:51 AM PST by tiamat ("Just a Bronze-Age Gal, Trapped in a Techno-World!")
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To: michaelbfree

I am so sorry for what you and your family are going through with your mom.

My grandmother got like that, and it was very hard.

10 posted on 11/02/2004 10:56:15 AM PST by tiamat ("Just a Bronze-Age Gal, Trapped in a Techno-World!")
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To: PleaseNoMore; nmh

The last that I heard or read, a definitive diagnosis of Alzheimer's can only be made by autopsy.

11 posted on 11/02/2004 10:56:19 AM PST by neverdem (Xin loi min oi)
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To: nmh

I dunno, my husband's grandmother (for whom our youngest is named for was the sweetest lady, but... she strangled nurse's aid with panty hose and almost killed them. At the time she was under the strong delusion that she was protecting her home and family.

My grandmother was always throwing tableware and fruit (especially apples) at my kids because she thought they were theiving grifters (her words). Most of the time she thought she was on a train going to meet up with her husband who had been a train conductor most of his life and they traveled a lot by train after the war.

I don't know that they were angry and aggressive, just that their reality and our reality crashed into each other a little hard every now and then.

12 posted on 11/02/2004 10:57:01 AM PST by Valpal1 (The constitution is going to be amended, the only question is by whom?)
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To: neverdem

Alzheimer's is not something I would wish on anyone....including John Kerry. It is the most cruel disease to both the victim and his/her family. My mother in law was diagnosed with Alzheimer's 7 years ago and is still the same, sweet person she always was, only she has NO short term memory. My husband and I call her Dory when we're alone because she is just like the blue fish Dory in Finding Nemo. That might sound cruel & mocking to some, but when a family watches a loved one slip away, sometimes the only thing left is to laugh. The best part of her condition is that she has no idea what is wrong with her as she has since forgotten her diagnosis. Prayers for anyone who is suffering.

13 posted on 11/02/2004 10:57:43 AM PST by PilloryHillary (John Kerry: Still a traitor after 33 years!)
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To: neverdem

My father in law died of Alzheimer's last year after he had reached the point where he forgot how to swallow and inspired food, leading to pneumonia. Over the previous four years, we had watched the progress of this disease until he no longer recognized any family members, knew who he was or what he was doing. This from a man who had been the auditor of a major corporation, who was well read, and who enjoyed life.

He was good natured to the end and never got violent or mean. This is a cruel disease.

14 posted on 11/02/2004 10:57:56 AM PST by mak5
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To: neverdem

Bump For Later

15 posted on 11/02/2004 10:58:29 AM PST by manic4organic (Kerry/Edwards - Both ends of the horse)
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To: tiamat

Thank you so much for your kind words of support. It is truly difficult as you know, very painful, very hurtful even though one understands the dynamics of the disease.
Thanks again....

16 posted on 11/02/2004 10:59:34 AM PST by michaelbfree
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To: nmh

You sir, are an idiot.
You know not of what you speak.
I'm going to take a shot here and guess that your comment is out of youthful ignorance.
For their sakes, I hope your parents will NEVER have to depend on YOU for care in their declining years.

17 posted on 11/02/2004 11:02:34 AM PST by Roccus
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To: michaelbfree

Not a problem.

I'll pray for you guys.

My MIL has it, too, and it is devestating that side of the family.

18 posted on 11/02/2004 11:04:48 AM PST by tiamat ("Just a Bronze-Age Gal, Trapped in a Techno-World!")
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To: Roccus
"You sir, are an idiot.
You know not of what you speak.
I'm going to take a shot here and guess that your comment is out of youthful ignorance.
For their sakes, I hope your parents will NEVER have to depend on YOU for care in their declining years."


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.
19 posted on 11/02/2004 11:10:29 AM PST by nmh (Intelligent people recognize Intelligent Design (God).)
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To: neverdem
My sister and I cared for Mom till her passing. For 7 years that disease charged along on it's way to destroying a sweet, dear lady. Her violent outbreaks mainly resulted in self injury. My Dad passed about 3mos. before Mom and although she had recognized no one for several years, she would ask for him each day. When told he was gone, it was like she found out for the first time. Tore our hearts out.
Try to remember the fun things. With Mom it was tissues and mini Tootsie-Rolls. When I'd undress her for bed, it was like a pinata(sp?) tissues and Tootsie-rolls stuffed everywhere and falling to the floor. We buried her with both in her pockets.
I never thought that I'd be changing my Mom's diapers, but hey, she did it or me. You do what ya gotta do and every once in a while, a different light would come in her eye and I liked to believe that she understood.
Good luck.
20 posted on 11/02/2004 11:23:38 AM PST by Roccus
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