New Yorker Marion Roach, daughter of an Alzheimer's disease victim and writer on the subject, had the catch phrase that essentially summed up what everyone else was saying: "When communication stops, the grief begins."
Attorney Nancy N. Dubler agreed, saying that the patient's right to know (of the disease and its ramifications) was one of six rights "which are no less applicable to Alzheimer's patients than to others. Without that knowledge, a victim is disempowered. Without that knowledge, there's no way the victim can make any informed consent (to the decisions the family will face)."
Also in agreement was Dr. Steven H. Zarit, associate professor of gerontology and psychology and acting director of the Leonard Davis School of Gerontology, Ethel Percy Andrus Gerontology Center at USC. He spoke about the care givers, the victim's family or friends, and how "they do better when they get their questions answered." This extended, he said, to involving the care giver in the treatment plan and communicating promptly to the family both the good and the bad things occurring in the patient's behavior.
It was an all-day intensive seminar on Alzheimer's disease, just one of several subjects examined in depth at the American Assn. of Homes for the Aging 24th annual conference this week at the Bonaventure. Of about 3,000 at the conference, representing 2,700 nonprofit facilities for the aged around the nation, more than 350 zeroed in on Alzheimer's disease. These were people past the point of needing definitions, explanations and the emotional support which so often accompanies Alzheimer's presentations.
Health-care professionals all, they well knew what Alzheimer's was--how it's been generally lumped with senility, but tends to hit people under age 65, a process of mental deterioration where patients lose their ability to remember, communicate, to reason and finally to care for themselves, all the while remaining physically strong and healthy. The cause of Alzheimer's disease is not known. Nor is there a known cure.
The timing of the seminar was fitting. November has been declared by President Reagan as National Alzheimer's Disease Month and seminars, films and projects designed to draw attention to the disease--which has only received public recognition in the last few years--are scheduled around the United States. In Los Angeles, the John Douglas French Foundation for Alzheimer's Disease this week sponsored a two-day seminar on "Early Diagnosis in Alzheimer's Disease" bringing together 40 research scientists. The Los Angeles chapter of the Alzheimer's Disease and Related Disorders Assn. held its annual awards dinner Wednesday, honoring actors Shirley Jones, Len Cariou and Richard Kiley, Bristol Myers for its philanthropy, Rep. Ed Roybal (D-Los Angeles) for public policy, Dorothy Kirsten French for public service, Jim Segel for volunteerism and Dr. Lissy F. Jarvick for the research she has done in the field.
The approach to Alzheimer's disease at the American Assn. of Homes for the Aging conference was less medical than pragmatic. What they wanted, these health-care professionals made clear, were some practical solutions to the reality that an increasing number of Americans are being diagnosed as having Alzheimer's disease every year. It is estimated 2 million elderly Americans suffer from the disease. Moreover, with the significant increase in the human life span and the number of people who experience this longevity, experts predict that the incidence of Alzheimer's disease will triple within the next 50 years unless a cure is found.
Despite a family's best efforts to keep a victim at home, nursing homes almost inevitably are part of the final package. Alzheimer's victims constitute 50% to 60% of the 1.3 million people in nursing homes, accounting for more than half of the $25 to $26 billion spent annually on such care.
Reluctant to accept Alzheimer's victims because they tend to be difficult patients, requiring not so much medical care as constant attention, many nursing homes are virtually starting from scratch in determining how to attend to the particular needs of Alzheimer's patients and their families.
Family 'the Other Victim'
And families, contended speakers Zarit and Karla Griffin, information and referral supervisor for San Francisco's Family Survival Project, are very much "the other victim."
In fact, said Zarit, just because an Alzheimer's patient has been placed in a professional facility, "the care giver's burden doesn't stop at the institution's door. The care giver may no longer be involved round the clock, but they'll continue to visit, sometimes long distances. There's the stress of interacting with staff, plus the additional financial burden.
"One of our studies among wives who placed their spouses in an institution showed that the wives' need for a social life increased afterwards.