Softening the Descent : For Alzheimer’s Patients, Better Quality of Life Can Be Just a Waltz Away

LOS ALAMITOS —  Until a month ago Mabel, a 90-year-old Alzheimer’s patient, lived isolated in her Leisure World Seal Beach apartment with nothing to look forward to but the continuing loss of her memory and coordination.

As she grew more feeble, a conservator had Mabel admitted to the John Douglas French Center, a 148-bed facility specializing in the care of Alzheimer’s patients. Mabel bemoaned the move until the day Dana Andrews, a popular actor of the 1940s who also suffers from the disease, asked her to dance. She was elated.

The joy that Alzheimer’s patients such as Mabel can derive from music, dancing and the company of friends are among the many lessons that care-givers at the French Center have learned about improving the quality of life of the victims of this often slow-moving disease that attacks the brain.

When it opened in 1987, the French Center was the first skilled nursing facility in the nation designed exclusively for Alzheimer’s patients. It still offers the broadest range of services in Orange County for Alzheimer’s patients at all stages of their disease.

Experience gleaned there has helped shatter myths about Alzheimer’s patients, such as the belief that most are too anxious to enjoy travel and group activities, or unable to concentrate long enough to paint a picture or to know that events on television are not part of their personal lives.

Above all, care-givers say, they have learned that Alzheimer’s patients do best when they receive individual attention and are kept busy with tasks that focus on the immediate moment to make the most of remaining skills and interests.

Since its opening five years ago Friday, the French Center has become a recognized leader in its specialized field.

Linda Scheck, associate director of the Alzheimer’s Assn. of Orange County, said that in “taking a leadership role, the center has increased public awareness about the disease and educated the Orange County community about improved methods of care.”

Usually striking people 50 and older, the disease gradually and irreversibly destroys the memory of its victims, robbing them eventually of the ability to think, talk and care for themselves. Inevitably, usually in seven to 12 years, the disease ends in death.

About 4 million people in the United States, including an estimated 40,000 in Orange County, have the disease. Its wide-ranging impact is becoming more evident as the nation’s population ages and improved methods of diagnosis are making it possible to detect in early stages. There is no cure and its cause remains a mystery.

A visit to the French Center provides a firsthand look at how care-givers use whatever works to add meaning to the lives of their patients, from music and painting to smiles and simple kindness.

The day-care area at the French Center sports a gallery of paintings by patients, who show them off to family and friends.

“Some people may no longer have verbal skills, but they can get their feelings out in a picture,” said Lisa Huggard, the day-care activities director. Patients who otherwise can’t concentrate, she said, will spend an hour working at a painting. They frequently draw upon memories of their youth for subjects.

While patients may not recall what happened five minutes earlier, Huggard said, they usually have fond memories of their earlier lives and like to reminisce.

Music is common throughout the center, especially tunes of the 1920s through the ‘40s, in deference to a population with an average age of 70.

“I have learned that music should be used on a daily basis,” said Ginny Cullen, the activity program director. “Some people are able to dance better than they can walk.” And some who can’t talk nonetheless can sing a favorite tune, or at least hum, she added.

Other events the patients especially relish, Cullen said, are visits with pets, especially dogs, which are regularly brought to the center by volunteers.

Mabel, who so enjoyed the dance with Andrews, likes to drop by the day-care center to see Rocky, a Pekingese belonging to a staff member there. Rocky spends each day with the patients and allows Mabel, whose full name was not revealed, to cuddle him by the hour.

Because the patients often cannot savor the recollection of entertainment they enjoyed on previous days, the staff is driven to keep them busy. “Your goal is to make them happy in the moment,” said Mark Fieldson, a family counselor at the center.

The French Center was the dream of the late Dorothy Kirsten French, a famed opera singer, who became dismayed about the shortage of facilities for Alzheimer’s patients when her husband fell victim to the disease.

John Douglas French, a neurosurgeon and co-founder of UCLA’s Brain Research Institute, was the first patient to move into the center named for him. He died in 1989 at the age 77. Dorothy Kirsten French died Wednesday.

The center is owned by National Medical Enterprises, a major health care services provider based in Santa Monica, and managed by the Hillhaven Corp. of Tacoma, Wash., which operates 300 nursing homes nationwide.

Ferri Kidane, executive director of the center, said her aim is to tailor care to the needs of the individual. “Basically we have no rules,” she said. “The rule is what works best for the patient.”

The job of the care-givers at the center, she said, is to provide the patients encouragement “to help them feel good about what they can do.”

To reduce anxiety that could stem from fear of the future, the center’s patients are segregated according to the severity of their illness.

A key to caring for the patients is patience on the part of the staff. Proper treatment is a time-consuming endeavor that becomes more demanding as patients lose abilities and become disoriented and confined to wheelchairs.

Mealtime is a challenge, said Kidane. Patients in the early stages of the illness are able to feed themselves. But they must be served one course at a time so they don’t have to select among several items on a tray.

In later stages of the disease, Kidane said, patients have to be spoon-fed and coached to chew and swallow.

Showering can be terrifying for some who forget from day to day the feel of water hitting their faces. “Some patients take five nurses to shower them,” Kidane said.

All this attention is costly. For its services, the center charges the families of its 135 residents $4,000 a month. Kidane said the center cannot afford to accept Alzheimer’s patients on Medi-Cal, the state’s medical insurance for the indigent, which pays an average rate of $70 a day.

In instances where residents can no longer afford the $4,000 fee, a center spokeswoman said, families are obliged to transfer them to less costly facilities. She added that the center’s social services department will assist them in choosing the best alternative within each patient’s financial means.

Stephen L. Read, the center’s medical director, said some residents, with consent of their relatives have participated in drug trials that are seeking a treatment for the disease. Although no federally approved treatment is yet available, he said, other medications, such as anti-depressants, can reduce some of the symptoms.

While public awareness of the seriousness of Alzheimer’s has increased, Read said, it still must gain more attention so that sufferers can receive proper care and aren’t allowed to drive cars or have control of bank accounts or be preyed upon by swindlers or wander off and get lost.

“I think people are more aware and come in for evaluation sooner,” Read said. “Sometimes, people now call themselves to say something is wrong with their memory.”

In response to requests, two years ago the French Center established a community clinic to diagnose Alzheimer’s. More recently the center added a case management service to help families choose the most appropriate care for afflicted relatives.

Besides the French Center, options include day-care centers and board and care facilities that help Alzheimer’s patients with the tasks of daily life or skilled nursing assistance provided in institutions or at home.

To help families pay for the care of Alzheimer’s patients, the French Center a year ago founded a nonprofit organization that so far has raised and distributed more than $60,000.

“Many (Alzheimer’s patients) are still cared for at home by loving care-givers, many of whom are pushing themselves to the point of exhaustion,” Kidane said. To help these people, the center has added a day-care program and short-term boarding so family members can get a respite from their demanding routines.

Bob Flannes, 72, of Laguna Beach recalled “the nightmare” of managing three shifts of nurses aides when he was trying to care for his wife, Barbara.

“It was kind of like running a small hospital at home. Sometimes the aides wouldn’t show up or would show up late and they were not always aware if she needed medical attention.”

Four and a half years ago, Flannes brought Barbara, now 69, to the French Center. Despite the relief of knowing she is well cared for, watching her health deteriorate has been difficult, Flannes said.

Just a few years ago, he said, he would celebrate birthdays and wedding anniversaries with her. But now there is no point to it, he said, because she doesn’t know what is going on.

Then about eight months ago she stopped recognizing him. “It was a shock at first. All of a sudden there was no more communication,” he said.

To cope with all this, Flannes said he joined a family support group that the French Center sponsors where he can share his grief with others who will understand.

“In the beginning you figure there must be a cure for this. You keep hoping,” he said. “But eventually you come to the realization there isn’t any.”