The facts have not gotten any more reassuring for patients of Alzheimer's disease and their families.
In Los Angeles County alone, according to a study conducted in February by Westside Independent Services to the Elderly, 39,000 patients in skilled nursing homes are Alzheimer's patients. Nationally, Alzheimer's is the fourth leading cause of death behind heart disease, cancer and stroke. It affects close to 3 million Americans yearly, 20% of those older than 65. And, according to projections of the Health Care Financing Administration, $78 billion will be spent by 1990 to institutionalize these patients--costs that are expected to increase substantially by 2000 when nearly two-thirds of the U.S. population will be older than 50 and at risk of being stricken with Alzheimer's disease.
There is no known cause or cure for the disease, which simply is described as a process of mental deterioration. Patients lose their ability to communicate, to remember, to reason, to care for themselves but remain physically strong and healthy.
However, if the situation seems desperate--it no longer, agree people on the scene, seems quite so hopeless.
--The 10-patient unit and garden especially designed for Alzheimer's patients that is being dedicated today at the Motion Picture and Television Hospital in Woodland Hills. The little things are most impressive here: homey, flower-print wallpaper in every room and along the hallways, patients encouraged to bring furniture from home, the removal of handsome beveled-edged mirrors above the sinks because psychologists said the double image could be confusing. Given the Alzheimer's patients well-known predilection for wandering, the enclosed garden has about one-quarter-mile of footpath, much of it along an attractively fenced, man-made stream, past an aviary and a wishing well.
--The availability of respite care in addition to its already existing day-care program at Casa Colina Hospital for Rehabilitative Medicine in Pomona. Patients can stay from several hours to a month, giving their caretakers or relatives a break to re-energize or to handle other family crises.
--The John Douglas French Foundation has finalized an agreement with National Medical Enterprises and Los Alamitos Medical Center for an Alzheimer's facility there. Ground-breaking plans are expected to be announced this summer. Earlier negotiations with Memorial Hospital of Long Beach are on hold.
--The new umbrella program initiated by the Los Angeles County branch of Alzheimer's Disease and Related Disorders Assn. to increase the number of adult day-care centers willing to accept Alzheimer's patients. The program provides funding for such needs as security guards or new fences to make a center Alzheimer-practical.
More Media Attention
What's happened, said Stephanie M. Goor, executive director of the association, is "the silent epidemic is no longer silent. Just look at the TV and radio media alone. We've been on Michael Jackson, Art Ulene has talked about us, Phil Donahue spent an hour on the subject. Alzheimer's disease has made the cover of Newsweek. It's been in Vogue, McCall's, Time. And 'Do You Remember Love?' (the film starring Richard Kiley and Joanne Woodward about a woman with Alzheimer's disease) certainly didn't hurt."
Indeed, said Tom Porter, consultant to the Assembly Special Committee on Medi-Cal Oversight, "There's a definite trend for attention for the elderly."
The reality is that the American population is aging faster than it's increasing, he said, and "given the high risk of disease associated with aging, people are coming to recognize the need for long-term care over an extended period.
"The traditional societal response, at least in America, has being reimbursement for institutional years. But over the last 10 years, there have been studies, a real effort to find alternatives."
And Alzheimer's disease, because of all the attention it has received, said Porter, has been the "flagship" for a new set of programs and attitudes.
New Programs Under Way
Dr. Steven Zarit, associate professor of gerontology and psychology at USC's Andrus Gerontology Center and co-director of clinical core at the Alzheimer's Disease Research Center of USC, ticked off the specifics.
"Suddenly attention is being given to the development of special units in institutions for Alzheimer patients. There's belated recognition that their needs aren't being met at home."
Any common characteristics to these units?
"No, but there should be. One thing a facility ought to characterize is a physical design so its patients can wander, where they can get rid of all that energy they have. And there should be a tolerance for the patients who are awake at night in terms of staff programs and foods. There needs to be a recognition that Alzheimer's patients get off our clock.
"On the state level, there are more day-care programs especially for dementia patients: simple crafts, the ability to walk, music, simple exercise. Actually, one of the most successful programs always has two or three of these activities going at once so the patient can wander between them.
"But three or four years ago, there was only one adult day-care center in the county that considered taking Alzheimer's patients. Now there are several," Zarit said.
(Goor said 24 centers in the county take three to eight dementia patients at a time.)
"And respite care," Zarit continued. "That's a new concept, this recognizing that families caring for an elderly person with an impairment are going to burn out. When that happens, there are two options: A family can either put the patient in a nursing facility or they can put them in a facility which is temporary and will merely give the family a break. That, some people like myself believe, will help the patient stay with the family much longer."
While Goor laments that there still aren't enough nursing homes willing and able to care for Alzheimer's patients, that there is a need for more adult day care and respite programs, and that the need for more federal research funds (the National Institute of Health allocated $35 million toward Alzheimer's disease in 1985 compared with $1 billion-plus for cancer)--she and others in the field are nonetheless heartened.
Staffs Are Enthusiastic
Zarit said he sees a momentum "and the staffs at the various institutes are enthusiastic about keeping it going. We've had a fabulous response from people who've enrolled themselves and their families in our research program. The public really wants to help."
Goor has observed the same thing. The number of calls to the Alzheimer's association, which operates as a resource and referral center, is already at 7,000 compared with 5,000 in 1984. There are now more than 25 association-sponsored support groups and a volunteer program has been started at the association's office.
Some volunteers are people who don't have Alzheimer's patients as relatives, said Goor. "We asked them why and they said other diseases like cancer already had volunteers."
Then there's Casa Colina and the Motion Picture and Television Hospital, two facilities which have responded to a need by seeking and creating innovative programs.
At Casa Colina, which traditionally has focused on neurologically impaired adults, administrator Lenore Hirsch and Jodi Brandenberg created an Alzheimer service program 1 1/2 years ago. The program includes day care, two family-support groups and a diagnostic program besides the newly instituted respite care.
The day-care program, Brandenberg said, has about 14 people daily. The agenda may include visits from youngsters in the children's ward, the humane society with a few animals (including an unsuccessful encounter with a snake), or walks to a lake to feed the ducks or watch planes land at a nearby airport.
The program has a daily fee of $40. But Casa Colina, which unlike most other day-care programs is licensed as a private, adult day-health facility, is eligible for Medi-Cal payments. (Despite much vocalizing by families and demands for legislative change, Alzheimer's disease is not covered by most insurance companies.)
Respite Care Available
As for the respite care, Brandenberg said, it came about because "in the past year we've had two Alzheimer's patients whose care-givers had heart attacks. One gentleman (with Alzheimer's disease) was placed in 72-hour hold in the psychiatric unit of a hospital. Then he was moved to another where he was beat up. He died three weeks later. It was very crushing.
"Then a house was made available to us on the hospital grounds. The hospital, you see, owns four houses, three of which are used for transitioning brain-injured patients back into the community. This one has a fenced backyard so they can walk about. They can come to the day-care program during the week. We can keep them for up to a month or two or three hours on a Saturday." That care costs $5 an hour, but Brandenberg said the hospital is looking into funding on a sliding scale.
Brandenberg uses some of the same words as Barbara Kuperman, assistant director of nursing in charge of the skilled area at the Motion Picture and Television Hospital: dignity and love. Kuperman, according to hospital chief executive officer Robert Tonry, initiated the idea of developing an Alzheimer's wing. Now within days of bringing in its first patients, she's on a run of exhilaration.
So far all three shifts of the wing's nursing staff have been trained to deal with Alzheimer's patients; virtually every sharp corner in the wing and around the garden has been sanded and rounded; silk plants, assorted books and decorative items have been glued to shelves high along the hall, giving a distinctly homey look and below the shelves, photographs of '20s and '30s movie stars, the age group they expect to draw. In the garden, there are benches and rocking chairs, an elbow-level sandbox where one can stand and run one's hands through the grains, signs identifying flowers, trees, maybe to jog memories.
Tonry contends everything that has been done is there to be studied for effect and be changed, if necessary. The hospital has been in communication with the Andrus Gerontology Center and the Alzheimer Disease Research Group.
"With this wing, we can assume some posture of research. Usually, we just take care of people. But with what we're doing here, we can study the people, what works, what doesn't. It's a new field just begging for answers. And here, nothing is written in gold."