Cover Story

November 2005

By Chris Bartolomeo

Looking back, Bernie Williams, a retired biology high school teacher, realized she missed the signs that her husband Roy was in the early stages of Alzheimer’s. While the couple vacationed in Europe 10 years ago, Roy dove into the shallow end of a hotel pool and emerged with a bloody head wound.

“I was in denial,” says Bernie Williams from Cinnaminson, New Jersey. “No one wants to believe that Alzheimer’s can strike your family. I passed the pool incident off as an accident. But in doing so I lost six years before he was diagnosed. I’ll never know how he could have been helped if I had acted sooner.”

Today, Williams, 66, still wrestles with guilt, not just about her failure to seek treatment immediately but how she lost her patience when Roy couldn’t perform simple tasks. “It would often take me three hours to dress him in the morning,” she recalls. “I yelled at him and he’d look like a child who had been scolded.” Williams got some relief when she joined an Alzheimer’s spouse support group and enrolled him in adult day care.

“One of the men in the support group reminded me that it was not my husband doing these things, it’s the disease,” says Williams. “After that, I still lost my temper occasionally, but that realization helped me to be more patient.” Her husband died last June at age 79.

The close-knit family of Kathleen Marsh, a retired Kaukauna, Wisconsin, English teacher, united to care for Kathleen’s mom, Rosemary Brantmeier. The wake-up call came when Brantmeier was terminated from her volunteer job at a local school library because she could no longer sort books. “The thing that really worked for us was family,” says Marsh. “The 16 of us met and made decisions by consensus. It was very important that everyone be on board. It was a blessing that there were so many of us, so we could share the burden.”

Marsh learned not to argue with her mother, who, like many Alzheimer’s sufferers, lived in a fantasy world.

“My mother would often say that my dad was coming to pick her up even though he had been gone for many years,” Marsh says. “Our first temptation was to say, ‘No, Mom, Dad is not coming.’

“But it would comfort her much more to say something like ‘Dad had problems at the farm, he’ll be here soon.’ Because a half hour later, she’d forgotten.”

Three years ago, Marsh’s mother showed up for Mass at 11 p.m. believing it was 11 a.m. It was then that the family decided she could no longer live alone on the family farm. But taking her to an independent living facility proved daunting.

“It was the worst day of my life,” says Marsh. “We had to take her from the small Wisconsin town where she lived for 80 years.” Heeding the advice of the local Alzheimer’s Association, the family prepared her mother’s room with all her things to make her feel at home. But when they arrived at the facility, her mother refused to get out of the car.

“My husband had to carry her,” says Marsh who still cries at the memory. “But she looked around, saw her things, and realized she had no choice, so she bravely walked to her new room and greeted everyone.”

Ralph Chamblin, a retired French and Spanish teacher from Albuquerque, New Mexico, says when his wife Isabel began showing signs of the disease he realized that the couple could no longer live in their suburban single-family home. “I knew I couldn’t care for my wife alone,” he says. “We needed a car to get anywhere and my wife needed daily care that was very expensive.”

Chamblin and his wife moved to a life care retirement community that offered many levels of service depending upon need: independent living residence, assisted living, a dementia ward, and a nursing home. And there was lots of supportive staff on hand.

At first, the couple lived in the independent living section. Later, as Isabel’s condition worsened, she was moved to the dementia ward and eventually the nursing home. “I joined a support group where a facilitator guided the discussion about how things were going,” he says. “We were all losing our spouses through a terribly slow death and it helped to be surrounded by others going through the same thing.”

The death of a close relative with Alzheimer’s can leave the survivors fearful about their own fate. Kathleen Marsh lost both her mother and grandfather on her mother’s side to Alzheimer’s, so even at the tender age of 58, she’s very conscious of the threat.

“I look like my mother physically so I think the cards are stacked against me,” she says. “But I take precautions. I’m extremely active, I keep my weight down, eat healthy. But you have to live your life and not worry.” She’s hoping there will be effective ways to ward off Alzheimer’s before it’s her turn.

—Thomas Grillo

Can We STOP Alzheimer’s Disease?

Winston Churchill, actress Rita Hayworth, writer E.B. White, composer Aaron Copeland, and former President Ronald Reagan all had Alzheimer’s disease, an illness that used to be whispered about and is now coming into the open.

Alzheimer’s, or AD, is insidious, complex, and fascinating. It robs sufferers of memory, reasoning, language, and ultimately motor skills—and it can start with a symptom as small as suddenly starting to misplace your wallet when you didn’t do that before. But don’t panic if this happens to you, even if one of your parents had Alzheimer’s. Other common disorders, from depression to B-12 deficiency, mimic the early symptoms of AD. And except for a rare, early-onset form that has a strong genetic link, there is no one definitive risk factor for Alzheimer’s. It seems to be caused by a combination of genetic, environmental, and lifestyle factors.

Age is the primary risk factor—the prevalence doubles every five years over 65, although there is some evidence that the incidence is lower among those who get past 90.

No clear family pattern

But age isn’t the whole story. Nor is family history. Except in rare cases, there is no clear family pattern in the most common form, in which symptoms usually appear after age 60, although having a parent or sibling with AD does increase your risk. Other risk factors include cardiovascular disease; a meat-based, high-fat diet; inflammation; viruses; environmental factors; smoking; and a history of head injury.

The list seems so bewildering, you may wonder if lowering your risk is possible. But the cardiovascular connection suggests to experts that exercise and a healthy diet can help, since these are ways to improve the health of your blood vessels. The Alzheimer’s Association also emphasizes maintaining brain health—from staying mentally active and socially involved to guarding against head injuries with seat belts and cycling helmets.

Tangles and plaques

Scientists are still unraveling the mystery of AD. Its hall-marks, observed in autopsies, are knots in nerve cells in the cerebral cortex (the part of the brain responsible for mem-ory and reasoning), and cellular debris called plaques that accumulate around those knots. Over time, the tangles and plaques spread, communication among nerve cells is mass-ively disrupted, and eventually the cells die. At advanced stages, people with AD cannot speak intelligibly, hold their heads up, smile, or even swallow.

Diagnosis can be difficult. Family members often notice symptoms first. The disease can first show itself with a change in forgetfulness. Mild forgetfulness is normal in healthy people growing older. “Forgetfulness starts about as soon as you’re able to re-member something,” says Dr. Bill Thies, Alzheimer’s Association vice president of Medical and Scientific Affairs. But in Alzheimer’s disease, the pattern changes and more severe symptoms follow. Thies says someone without AD might forget where they put the car keys. Someone with AD may forget what the keys are for.

When diagnosing AD, doctors try to rule out other, often treatable causes of some of these symptoms—thyroid problems, drug reactions, depression, brain tumors, alcohol dependency, and blood vessel disease in the brain.

New drugs

No drug treatment to date can halt the disease permanently. But, in the past decade, new drugs have emerged that can sometimes ameliorate the symptoms and help stave off the need for nursing home care.

AD is becoming an ever more urgent priority as baby boomers age. Advocates call on Congress to make Medicare and Medicaid more responsive to AD patients and their caregivers, and improve tax and consumer laws to help families pay for long-term care. They also want Congress to appropriate $1 billion for Alzheimer’s research. With the baby boom generation aging, “we need to short-circuit the epidemic of Alzheimer’s,” says Thies. Otherwise, “we’re going to bankrupt our health care system.”

But Thies is an optimist. Drugs that may prevent or at least slow down the disease are already being tested, he says, and he believes it won’t be very long before AD can be managed the way high blood cholesterol is handled today. “I can’t tell you if it’s five or ten or seven years away,” he says, “but I think I’m going to be here when it happens.”

Thies is 63.

The Alzheimer’s Association has identified 10 warning signs of the disease:

• memory loss (forgetting recently learned information, not occasionally forgetting names or appointments)
• difficulty performing familiar tasks (such as placing a telephone call)
• problems with language (forgetting simple words or substituting unusual words for common ones)
• disorientation as to time and place (becoming lost in your own neighborhood)
• poor or decreased judgment (such as wearing little clothing in the cold)
• problems with abstract thinking (forgetting how to use numbers)
• misplacing things (particularly in unusual places, such as leaving a wristwatch in the sugar bowl)
• changes in mood or behavior (including rapid mood swings)
• changes in personality (such as becoming extremely confused, suspicious, or fearful)
• and loss of initiative (sitting in front of the TV for hours, for example).

Four brain-healthy life choices recommended by the Alzheimer’s Association:

• Stay mentally active
• Remain socially involved
• Stay physically active
• Adopt a brain-healthy diet: low fat, low cholesterol, lots of dark vegetables and fruits

The Alzheimer’s Association Web site is full of news and resources for anyone coping with Alzheimer’s—or just worried about it. Visit www.alz.org .