More Than Death, Many Elderly Fear Dementia

By N. R. KLEINFIELD, NY Times

 November 11, 2002

  Stanford Smilow is 73 and stays active doing puzzles, driving vintage cars, making models and walking the dog.

It happens when she forgets. It could be a phone number. It could be an appointment. She might be about to introduce someone — someone she knows very well — and the name will totally elude her: "And this is . . . uh . . . uh. . . ."

The fear will crest from some corner of Barbara Waldon's self. She will think with a certain foreboding: Is this the sign? Have I got it? Is my mind going?

She is 65. Few people get dementia that young, and her sporadic memory lapses don't necessarily signify much. But still. Her mother had Alzheimer's disease, the dominant cause of dementia, and she saw it unspool in her. Early on, her mother kept notebooks of pertinent information, even dialogue from her husband. Then if he would say to her, "I already told you that," she would riffle through her notebooks to see if in fact he had. Eventually, she would neglect to turn the stove off, and later she would be unable to cook. One day, she left her home in her bathrobe and walked seven miles and could not say where she lived.

On and off, Mrs. Waldon worries that she, too, might be consigned to a life no one wants to live. She is a retired guest coordinator and field producer for a cable television network and lives in Cambria Heights, Queens. "If I forget something," she said, "I begin to think, `Oh my God, do I have Alzheimer's?' That's worse than death."

It is often assumed that death is the great bogeyman of the elderly, what they dread above all else, but now that people live much longer, and have greater expectations for their old age, the complexion of their worries has changed. Many elderly people say that what they fear more than death and scourges like cancer is losing their minds, a debasing death of its own sort.

Years ago, people joked quaintly about a forgetful aunt or uncle: "Oh, she's just a bit senile. Don't mind her." But one of the cruel consequences of people living longer is that dementia, particularly Alzheimer's disease, is increasingly commonplace. As more people hear about it and see it mercilessly transform relatives and friends, they grow alarmed about their own fates. It has reached the point that far more people appear concerned about getting the disorder than are ever likely to get it.

Though considerable research is under way, little about Alzheimer's is well understood, including exactly what causes it, and there is no cure. It is not a normal part of aging, but it is a disease almost exclusively of the aged. The older you get, the more likely you are to get it. Denis Evans, director of the Rush Institute for Healthy Aging, estimates that about 13 percent of Americans 65 and older suffer from Alzheimer's. By his calculation, less than 2 percent of people between 65 and 74 have it, but among those 85 and older, more than 40 percent do.

"People fear this more than death, because it steals your personality and turns you into somebody that requires total care," said Alexandre Bennett, a clinical neuropsychologist who specializes in geriatrics. She has seen many people caught up in fear of Alzheimer's, people she refers to as the "worried well." More often than not in her experience, she said, the people who worried about it did not have it; it was the ones unaware of memory lapses who were often in the early throes of the condition.

While most elderly people will never confront the disease, the odds lose their meaning when you see someone up close withering under its curse. And then if you forget a name, can't find the keys, you wonder.

Winifred Stevenson, 86, lives at the Hebrew Home for the Aged at Riverdale. She shudders at all the dementia she sees around her in the corridors and rooms. "Day after day, I pray to the Lord I won't turn out that way," she said. "I'd rather die than end up like that. I don't want to be a burden."

She went on, "I've been getting quite forgetful. I think, `Oh my God, I hope this isn't the beginning of it.' Whenever I forget a name, I go through the alphabet — a, b, c — to see if it will get me to remember the name. I'm very worried."

Encased in their fears, many elderly people sift for means to ward off Alzheimer's. In truth, no one knows how to prevent it. A surfeit of dubious "brain" and "memory" pills and techniques prey on people's anxieties. Myths and uncertainties persist. For many years, it has been debated whether aluminum could be a culprit. While many scientists today doubt this, plenty of old people shun aluminum pots and pans and won't buy deodorants containing aluminum.

Some studies have suggested that consumption of things like vitamin E and ginkgo biloba, a plant extract, might help some people escape the disease, but the studies have invited further research. Certain doctors think eating fish and drinking red wine could do some good. It has long been considered wise to keep your mind and body active to enjoy a healthy old age: work crossword puzzles, socialize, read.

Ms. Stevenson elects activity. She reads. She knits — a scarf, yarn dolls, a hat. She paints pictures of animals. In the pouch on her wheelchair this day was a word puzzle book.

Bernard Strauss, 88, another resident of the Hebrew Home for the Aged, said he had noticed that many residents with Alzheimer's sleep much of the day away. So he eschews afternoon naps. Maybe that will shield him. He knows of no evidence it should. Still, if he finds himself nodding off, he'll flick on the television. "I put the ballgame on," he said. "I put the news on."

Malka Margolies, the director of communications for the Hebrew Home, who at 42 feels much too young to worry about dementia, said the condition was on her "to-do worry list" for the future. She used to visit her aunt, Bella Gitelman, in Israel, and her aunt would confide her terror that her mind was slipping. At night, as her aunt lay in bed, she did mental exercises. She would run through all the 70-odd names in her extended family, and then try to match the children with the proper parent. She did a lot of public speaking, and would try to remember when she gave a particular speech, where she delivered it, who introduced her and what hotel she stayed in.

Her aunt's fears came true. She got Alzheimer's. She is now 87. She no longer recognizes anyone.

Her brother, Morris Margolies, 80, a retired rabbi who lives in Leawood, Kan., is not haunted by dementia to the same extent, but he thinks about it. He, too, follows nighttime mental routines. He began them to fight his insomnia, but also to exercise his mind. "This gives me comfort that I'm not losing it," he said. He knows a lot about baseball, and one of his favorite drills is to try to name all the left-handed pitchers who won at least 15 games in a season. He has identified as many as 130 in a single night.

Stanford Smilow used to think he looked nothing like his brother, Mel. But as they have aged — Stanford is now 73, Mel is 80 — he has found it uncanny how much they look alike. He sees his brother and he sees himself.

It is uncomfortable. For several years, his brother has suffered from dementia. Often, as Mr. Smilow put it, "he's totally out of it."

Mel Smilow is in a nursing home. Stanford Smilow, a retired commercial photographer who lives on the Upper East Side, finds it disturbing to visit him. "I look at him and it's like I'm looking in a mirror," he said. He has his own share of memory lapses, which he hopes are normal for someone his age. "If I knew it was coming on for sure, I might not stay alive," he said. "I wouldn't want to be a drag on my wife."

He has begun doing crossword puzzles. For years he drove vintage cars at club races, and he still does. He builds model cars and World War II planes. Recently, he and his wife got an Afghan puppy. The dog forces him to go out for walks three or four times a day. When he returns, he bypasses the elevator and walks up the three flights of stairs.

It was 12:30. Natalie and Mel Gordon were taking their lunch at a bustling diner on the Upper East Side. They live in Flushing, Queens, married 55 years, full of vigor. Mrs. Gordon is 75 and used to be a social worker in a nursing home. Mr. Gordon is 80. Before retiring, he worked in advertising and then taught high school English.

"We joke about having a `senior moment,' the buzzphrase for forgetting something, but it's also serious," Mrs. Gordon said meditatively. "Because we all fear Alzheimer's or something that will affect us mentally."

The Gordons have seen several friends enter a dark alcove no one would want to enter. One was an artist. They would accompany him to museums, and he would stare transfixed at a painting and be unable to summon the words to express his appraisal. He went into a long-term care facility, developed full-blown Alzheimer's. He died a year ago, everyone around him a stranger.

Another friend was planning a 90th birthday party. The invitations were all ready. Then he suffered a stroke, became confused, was put into a nursing home. The party was held there.

"The big concern for me is will I recognize it when it begins," Mrs. Gordon said. "If I tell a joke a second time to the same people, is that it? The fear for me is, will I not recognize it and then slip into a condition where I will not be able to deal with my family and those I love. I don't want to slip out of my life and not be able to tell them how I feel."

She glanced at her husband: "My concern is will I become impatient with him if it happens to him."

He said, "I worry, will I be angry."

As they nibbled at their lunches, they got to talking, the patter of husbands and wives in a diner booth.

Him: I think I've noticed more inability for her to find the word, to find the sentence. In the last year.

Her: I'm thinking of a name of somebody, and I can remember it starts with a b.

Him: It's as if your mind is thinking of something, and then it gets distracted and goes off in another direction.

Her: My problem with you is not finding things, losing things around the house.

Him: But is that new?

Her: I don't know. I used to think it was carelessness.

Him: Maybe more frequently in the last few years.

Her: In defense, we have quite an extensive social. . . .

Him: Network.

Her: Thank you. I was searching for the word, and you found it.

The Gordons are active people. They volunteer. They go out a good deal. They support each other. They make lists galore. She has a special place where she stashes an extra comb for when he loses his comb.

They belong to a book discussion group, and after the views on the book are offered, the members typically drift into what they teasingly call their "organ recitals," when they rattle off capsule updates on their ailments: someone talks about his kidney, someone else gives the latest on a lung. Virtually never, though, does dementia come up. It is as if it is too frightening to mention.

The other day, during one of the organ recitals, the Gordons went ahead and broached the topic. Everyone chimed in. They all expressed their fears.

The apprehension sometimes insinuates itself early, well before one is old.

Three siblings, two sisters and a brother, all in their 40's, saw their mother, now 77, develop vascular dementia about five years ago. They didn't want to be identified, to protect their mother's privacy. Their mother spent her medical career specializing in geriatrics and dementia, and her specialty came to claim her. As the siblings have seen the metastasis of their mother, their own fears have mounted.

One of the sisters, who is 47, said, "Every time I can't remember someone's name, which happens all the time, or when I forget what I'm supposed to do, I think, uh-oh, is this happening to me?"

Her sister, who is 48, said: "A family joke as a child was do crossword puzzles and you won't get dementia. My mother told us that."

She doesn't do puzzles. Her sister has begun to try them.