The women came together and played games. They sat around the table and they chatted, although not always to each other. But they played. Especially when they gambled, their eyes brightened and their fading cheeks became flushed. They were paying rapt attention to the flick of the dealer's wheel, and when they gathered in their chips, their delight was palpable.
Alzheimer's disease is the relentless and inexorable disintegration of brain and mind, of one's very deepest self, of one's uniqueness. It is the most common of the so-called senile dementias -- the illnesses that, sometimes quite literally, bore holes in the brain, wreaking havoc and, to loved ones, heartbreak.
What the experts call "memory problems," encompassing the entire realm of dementias, are second only to lack of mobility as the main cause of institutionalization of the elderly in this country, principally in nursing homes. More than 1 million old people are in such homes.
As one participant pointed out at the recent annual conference of the National Council on the Aging, the nursing home would go the way of the iron lung after the discovery of the polio vaccine should Alzheimer's disease be conquered.
"Alzheimer's disease," said Dr. Gene D. Cohen, director of the National Institute of Mental Health program on aging, "can be looked at in many different ways.
"In one way, it is the kind of disorder where physical changes result in behavioral consequences. And this is one of the extraor- dinary aspects of this disorder. You have these neurochemical changes going on in the brain, yet you look at the manifestations and they are, for so much of the disorder, predominantly cognitive and behavioral."
"Here," he said, "is a devastating brain disorder, where for most of the course, many of the major symptoms are behavioral.
"It isn't like a stroke where we see neuromuscular impairment. With Alzheimer's we see the cognitive, behavioral and psychosocial effects of the disorder. And we see a scenario that evolves that is of triple jeopardy for the family: One, as the individual with Alzheimer's shows deterioration -- agitation, restlessness, forgetfulness -- the family is feeling the anguish of observing the changes.
"At the second level, there is an increased risk of delusional thoughts, and this often results in attacks on family members, often involving irrational accusations -- that, for instance, a spouse is unfaithful. This is often the final straw in destroying a family's capacity to deal with the individual.
"The family is already struggling with anguish, and on top of that these accusations are puzzling to those members who are less sophisticated about the illness. They may feel this is the real person, with all that meanness coming through and it is a terrible, tragic scenario, part of the dynamics that speaks to the high degree of depression in families where Alzheimer's disease is found."
Yet, says Cohen, "there are windows of opportunity."
"True or false," activities director Maureen Skelly is asking, "chickens have four legs. If you think it is false, raise your flag." First one, then another, and finally all of the women wave little blue flags. One of the women spins the spinner on a wooden circle around which parade the letters of the alphabet. The spinner lands on "W." "Can you think of some place to go that begins with a 'W'?" asks Skelly. One of the women, 82-year-old Leona Cobb, peers at Skelly. "Why yes," she says, "the White House." "Were you ever at the White House?" Skelly asks. "I was," says Leona Cobb firmly, her eyes alight with the memory. "I saw Mrs. Roosevelt. I helped," she says with pride and dignity, "at a tea."
"The nursing home," Cohen said, "is really a paradoxical situation. You have so many people in the nursing home setting, so many staff and so much of the work is labor intensive with regard to the essential activities of feeding, toileting, bathing, medicating. You have one of these situations where one is reminded of the lines from Samuel Taylor Coleridge's 'Ancient Mariner' -- 'Water water everywhere, nor any drop to drink . . .' In the nursing home, it is 'People people everywhere, and not a relationship to develop.' "
"Nursing homes," says Nancy Dazan, "are the last place we look when we can no longer handle a patient." Dazan is director of the Bethesda Fellowship House, a day-care center for the moderately impaired elderly. "If the caregivers can no longer take care of an individual," says Dazan, "We'd rather go to foster care."
At Fellowship House, where Maureen Skelly and the women are spending a rainy morning playing games, including a highly popular (and highly modified -- no real money involved, only chips) roulette, "we run activity programming all day."
The games being used on this day are prototypes for Eldergames Inc., a nonprofit company in Montgomery County, which hopes to market the games to day-care centers and nursing homes. They are especially designed to capture the interest of persons in the earlier stages of Alzheimer's or Alzheimer-like illnesses. They concentrate, for example, on evoking earlier memories when short-term memory, but not long-term memory, has begun to erode. They are also designed to engage the attention of these individuals who often exhibit extreme restlessness as they change -- as Cohen puts it -- from "doing to being."
One of the games is useful for those in whom the disease has progressed. It is made of cloth in different textures, and permits the repetitive folding action that is a common characteristic of Alzheimer's patients. They fold anything -- paper, handkerchiefs, napkins, even skirts. "Feel and Fold" also has a comforting and soothing effect.
Marion Wolff, a teacher of learning impaired youngsters, devised the games for her own mother, whose vision and memory were failing. The games were first adopted as a project by the Senior Job Co-op of the Jewish Council for the Aging. The project later became Eldergames Inc. So far, it is a concept with a few hand-made samples looking for a manufacturer.
The women, ranging in age from 71 to 90, each of them moderately impaired and therefore prototypes themselves of the games' intended players, are "sometimes confused and sometimes childish, but," says Betty Ustun, Eldergames president, "they are not children, and we never call the games 'toys.' "
Skelly, who trained as a recreation therapist, is adept at using the games to help the women with memory skills, to encourage them to reminisce, even to laugh. After an hour of unusually attentive play, with a group known for a characteristic short attention span, Skelly said of the games: "They are a long time in coming, and I'm especially pleased to see the recognition that these games are needed in long-term care facilities and places like this. I can't believe no one has done it before."
"One of the many problems these people face," says Ann Mehler of the Jewish Council for the Aging, who worked on the games with Wolff, "is isolation from their families and neighbors. They may be allowed to sit, unattended, for hours at a time, because more active people find it difficult to engage them in conversation."
A few days before, Cohen had voiced the same thought when he told those attending his lecture about a paper written by the late psychiatrist (and former head of the American Psychiatric Association) Dr. Jack Weinberg. The title was: "What Do You Say to Your Mother When You Have Nothing to Say?"
It might be, as Skelly told her group around the table at Fellowship House, something like "What do we do during the day that begins with an 'L'?"
"We lazy around," offered 89-year-old Della Webster.
"We have fun," said Emeroy Moorhead, who is 88.
"That doesn't begin with 'L,' " chided Della Webster.
"No," chimed in Leona Cobb, "but love does." Resources Eldergames Inc. 11710 Hunters La., Rockville, Md. 20852. National Institute of Mental Health, Mental Disorders of the Aging Branch, Room 11C-03, 5600 Fishers La., Rockville, Md. 20857. (For list of publications.) National Council on the Aging Inc., 600 Maryland Ave. SW, Washington, D.C. 20034. Ongoing studies of Alzheimer's disease are conducted by the National Institute of Aging, Laboratory of Neurosciences. 496-4754.