Alzheimer’s Safe House : John Douglas French Center offers some peace of mind and hope for the future for patients and their families

Mary Fortmann’s days and nights of watchfulness and worry are over.

They ended in February when Daniel, her husband of 50 years, became one of the first patients to enter the new Los Alamitos-based John Douglas French Center for Alzheimer’s Disease.

For the past four years, Mary’s life was reduced to one cause: keeping watch over her 71-year-old husband, who, as this mysterious disease progressed, became ever more prone to wandering away from home like a wayward child, pinching cheap knickknacks and throwing anguished tantrums in supermarkets.

“It had reached a point where I had to keep an eye on him all the time,” she said. “I was never sure what he might do.”

In the mornings, Mary clothed her husband; at night she bathed him. Increasingly, like many Alzheimer’s patients, he became verbally and physically abusive. There was no relief in outings or parties; only her closest friends could understand the demands and pressures placed on her.

For Fortmann and relatives of dozens of other Alzheimer’s patients, the opening of the French Center is an answer to a prayer.

The $10-million center was designed to provide special care for Alzheimer’s patients and to meet the needs of the patients’ families.

Its founders say it is the first free-standing facility in the country to deal exclusively with the care of Alzheimer’s patients. But more importantly, they view the clinic as a prototype and their work with patients and families as paving the way to answers for a long-ignored and little-understood disease.

Alzheimer’s “is an area of medicine where inexperience is the rule,” said the center’s medical director, Dr. Stephen L. Read. “There are deficiencies in the training of doctors to even recognize the disease. Those deficiencies are slowly being addressed, but one of the goals of the center will be to remedy the lack of knowledge about Alzheimer’s.”

Alzheimer’s is a progressive, irreversible brain disorder that results in a steady loss of brain cells, impaired mental faculties and, eventually, death.

The inability to learn or remember information is one early sign of the illness. Other symptoms include impaired judgment and reasoning ability, repetitive behavior, inarticulateness and personality changes such as depression and restlessness.

According to the National Institute on Aging, about 3 million Americans have the disease, which kills more than 150,000 people a year.

Medical authorities in Southern California estimate that as many as 187,000 Alzheimer’s patients live in Los Angeles and Orange counties.

French a Neurosurgeon

Former opera diva Dorothy Kirsten French established the John Douglas French Foundation in 1983 after her husband, a noted neurosurgeon and co-founder of the UCLA Brain Research Institute, developed Alzheimer’s disease.

The foundation, which established the center, has funded nearly $2 million in Alzheimer’s research and each year sponsors scientific conferences and seminars that attract leading researchers from around the world.

The French Center was built by National Medical Enterprises, a publicly held, for-profit company and one of the nation’s largest health care providers, and is operated by its subsidiary, Hillhaven Corp.

The design of the French Center incorporates recent innovations and knowledge gathered in the roughly 20 years that medical science has studied the disease.

The three-story, 148-bed facility, located near the Los Alamitos Medical Center, uses familiar colors, shapes and decor to create a homelike, private atmosphere for patients. Fixtures known to disturb and disorient Alzheimer’s patients--such as fluorescent lighting, narrow doorways and halls--have been avoided.

Small, intimate dining areas are scattered on each floor because large cafeteria-like settings have been shown to confuse patients.

Pathways around the facility are planned so that forgetful patients will always wander back to a central location. All the plants and shrubs on the grounds are nonpoisonous because patients attracted to colorful flowers will sometimes eat them.

Faucets Controlled

Likewise, in many of the bathrooms, faucets turn on and off automatically and water temperatures are controlled. Four nursing stations on each floor enable the staff to watch patients constantly.

Meals are designed to meet individual needs of patients and satisfy some general traits found among those who suffer from the disease. Dietitian Jerry Marshall said that at a certain stage of the illness, patients invariably begin to lose weight. Because of short attention spans, they often lose interest in a balanced but unwieldy three- or four-dish meal.

So cooks have devised a number of finger foods that can be eaten quickly and pack a nutritional punch, Marshall said.

“One of the things we’ve also observed is that Alzheimer’s patients have a penchant for sweets, so we might make chocolate brownies with prunes inside,” Marshall said. “We’d like to try to make everything as it would be made at home--like having hot breads for breakfast. That will be one of the most important things we do.”

Besides providing care for patients, the center will serve as a research base, providing clinical data for local universities and hospitals as well as for its own scientific team, headed by Read, which will work with the foundation’s scientific board.

Research goals at this stage of understanding the disease are still fairly basic, Read said.

For example, science has not developed a reliable test to detect the disease or to distinguish Alzheimer’s patients from those with other brain disorders.

And there are no established treatment therapies or guidelines for the kind of clinical care patients should receive.

“The concept of a facility clinically devoted to care of patients is a healthy one,” said Dr. David Drachman, chairman of the medical and scientific board of the Alzheimer’s Disease and Related Disorders Assn., a national group that provides information and support for Alzheimer’s families.

“I think it is a flagship that will point the way to improving care for patients throughout the country. But is it a model for the entire country? A lot will depend on the costs.”

Both private and nonprofit health care providers acknowledge that the costs of caring for Alzheimer’s patients--at the French Center and at private nursing homes--is steep.

Room and board at the French Center averages more than $36,000 annually--$125 per day for a private room and $100 for a semiprivate room with two patients, said Tom Henry, French Center executive director.

Medicare does not cover long-term care for the disease, and many private insurance policies exclude patients afflicted with dementia, Henry said.

Medical authorities say improving care for Alzheimer’s victims will prove to be one of the greatest challenges in health care. A recent study by the Hoover Institute at Stanford University estimated costs of caring for patients at $27 billion to $31 billion annually. Another study estimates per-patient cost at $25,000 to $30,000 per year.

Task Force Report

The 4-year-old state Alzheimer’s Task Force recently issued a report for the governor recommending that all insurance companies operating in California be required to provide long-term health care coverage for patients, including those with Alzheimer’s, said Henry, one of 11 task force members.

“Providing care to meet Alzheimer’s patients’ needs is not inexpensive,” Henry said. “One of our greatest problems is the lack of federal and state funds to reimburse families. However, people over 55 now constitute the largest voting block in the country. Government will have to start listening to somebody soon.”

Stephanie Goor, executive director of the Alzheimer’s Disease and Related Disorders Assn. of Los Angeles County, said her group receives more than 2,000 calls a month for information and referrals.

“The need for more (French Centers) is tremendous here in Southern California and throughout the country,” said Dr. Gary Small, an assistant professor of psychiatry at UCLA’s Neuropsychiatric Institute. “Nursing homes are filled with Alzheimer’s patients, and they don’t get the kinds of specialized care they need. I think the French Center will spearhead efforts to upgrade nursing home care throughout the country.”

Even at the French Center, employees are uncertain about day-to-day tasks simply because no models exist for long-term Alzheimer’s care.

“Staff members go through a two-week training class plus a two-day orientation here at the center to give them some understanding of what Alzheimer’s disease is. But much we will play by ear,” said nursing director Virginia Kellogg.

As part of therapy, patients who are able will be encouraged to exercise and engage in musical and artistic activities, said Shane Berli, a recreational therapist. Patients will not be bound to the center but will have regularly scheduled outings to parks and other local amusements, he added.

The center will also stress the involvement of families through family support groups and a family advisory council that will offer comments and suggestions about patient care.

One of the most difficult jobs will be helping relatives minimize the guilt of giving up care of a loved one, said Mark Fieldson, a family counselor at the center.

“Many relatives will have the attitude (about patients) that they are putting them away. People are naturally anxious and feel guilty,” he said. “We will encourage families to recognize that what they are doing is in the best interests of the patient but is also probably best for themselves.”

But guilt is not easy to assuage even for those knowledgeable about the disease, said Mary Fortmann.

“The night I left (Daniel at the center) I said to myself, ‘What have I done? I could have coped with this a little longer.’ But it was also a relief. I didn’t realize what kind of pressure I had been under. I think if he’s happy at the center I can put up with anything.”

The first noticeable signs of possible mental decline in Daniel Fortmann began just months before the end of a long and distinguished career as a surgeon at St. Joseph Medical Center in Pasadena.

Football Player

Fortmann entered the University of Chicago in 1936 and got his medical degree in 1940. To put himself through medical school, he parlayed speed and running talent into a career playing professional football with the Chicago Bears. He played eight seasons with the Bears, from 1936 to 1943.

Fortmann liked to tell how he was the last choice of the first draft ever conducted by the National Football League.

“The story goes that (Coach) George Halas thought ‘Fortmann’ sounded like a strong name, so they picked Daniel,” Mary said. “I think the most we ever made was about $8,000 a year, but those were the days when you played just because you loved the game. He made the Hall of Fame in its third year, but I think it was because everyone was just so impressed that he was a doctor.”

The family moved to California--first to Burbank and then to Pasadena--in 1947, and Fortmann settled in as a general surgeon at St. Joseph, a practice he devoted his life to, Mary said.

“He didn’t really have any other hobbies,” she said. “He was as happy as a clam, walking 10 feet in the air when he was at the hospital. His patients loved him.”

Shortly before his retirement four years ago, Fortmann began to suffer memory loss--he couldn’t remember names or where he had put things--but attributed his lapses to aging.

Memory Loss Worsened

Fortmann, like many Alzheimer’s sufferers, could not acknowledge that something was really wrong. “He would never admit it,” Mary said. “I think he was too macho for that. He would only admit to having a slight memory problem.”

But as the problem worsened, his two sons--one an engineer living in Boston, the other an internist at Stanford University--urged their father to enter a UCLA research program that diagnoses Alzheimer’s disease.

And so began Mary Fortmann’s days of torment. Her husband became increasingly ill at ease at home, she said, and he began pacing around the house and opening and closing the refrigerator because he had nothing else to do. And he was becoming more and more abusive, calling Mary names and finally one day knocking her down.

Nearly 70% of Alzheimer’s patients develop behavior disorders, such as aggressiveness, said Drachman, who is also chairman of the Neurology Department at the University of Massachusetts Medical Center.

Patients may also become delusional, believing that those around them are plotting against them. “One common way this is manifested, for example, is a husband believing there is a third person in the house besides the couple. He’ll yell at his wife, ‘You’re not my wife. Where is she?’ ” Drachman said.

During one of Fortmann’s wandering sprees, he got all the way to Burbank-Glendale-Pasadena Airport--no one ever figured out how--before he was detained by police who said he apparently was trying to make his way to New York.

Rages in Stores

The disease can manifest itself in odd ways. At grocery stores, Fortmann would become enraged at food prices and could barely be calmed. Mary learned from support groups she attended that other Alzheimer’s patients exhibited the same behavior.

She finally put her husband in a private day-care center in the San Fernando Valley because she was afraid to leave him alone. She learned of the French Foundation three years ago and decided to put him on the waiting list for the center.

After reading all of the available books and articles on Alzheimer’s disease and seeing movies and television shows on the subject, Mary Fortmann says that disseminating information about the illness is the most important task. (She said one intern who treated her husband thought his mother had the disease and asked her for information about it.) And family members must be willing to face the debilitating effects on loved ones.

“I have heard of a man with Alzheimer’s who was setting fires in his apartment building, and his wife never told anyone,” she said. “One of the most important things that family members can do is not to deny what’s going on.”