CHICAGO — Family members who take care of Alzheimer's disease victims are not asking for somebody to take their loved ones off their hands permanently. Just for a few hours.
To many spouses or grown children, that short respite from their days of constant caring could mean the difference between keeping their loved one at home and surrendering him or her to an institution.
It is more than a simple family crisis. With 2.5 million Americans suffering from Alzheimer's disease, and 750,000 of them already overcrowding nursing homes, respite care has become a national issue.
"We really feel the best place to take care of an Alzheimer patient is at home," said Jerome H. Stone, founder and chairman of the Alzheimer's Disease and Related Disorders Assn. (ADRDA). "It's better for the patient and it's better for society."
"But we, the public and our elected officials, have got to recognize the tremendous pressure this puts on the family and we have to find alternatives and respite for the care-giver."
Reasonable Source of Respite
Adult day-care centers appear to be the most reasonable source of this respite. On a very basic level, a good center can free a care-giver for several hours a day to do chores, run errands, recharge. It might also allow a care-giver to hold a necessary job and avoid bankruptcy.
On another level, the centers can be good for the patient, providing them with functional training and mental stimulation that can delay their cognitive decline. The centers also give the patient a sense of community, a social life of sorts.
"I've been to a lot of respite-care centers, and what may look like juvenile behavior to you and to me is a good outlet to these people," Stone said. "It's crayons and watercolors, 4-, 5- and 6-year-old stuff, but that's the level a lot of the people are operating on.
"We do feel that respite care is the way to go," he said. "A lot of people in nursing homes don't belong in nursing homes--our people believe a fifth of Alzheimer's patients might not be there if we had good respite care--and respite care may also help care-givers keep the Alzheimer patient in their home for longer than they would otherwise."
500 Centers Nationwide
But the problem is such centers are few and far between. There are perhaps 500 nationwide. With each capable of taking about 25 patients, "it's easy math to see it's not enough," Stone said.
The ADRDA, in conjunction with the Robert Johnson Foundation, is hoping to alleviate that with a $7.5-million pilot program to explore economical and practical ways to provide support services for Alzheimer's care-givers. The program will fund 25 adult day-care centers designed to serve as models for private and public centers in the future.
Congress has also recently authorized Medicare to spend $40 million to study adult day care and other support services for Alzheimer's victims, to determine whether these outpatient efforts will improve quality of life and decrease the costs of hospital and nursing home care.
Stone believes that it will. He points out that nursing home care typically costs more than $20,000 a year, while home care can cost $8,000 to $12,000. The cost of an adult day-care program have been estimated to be an additional $6,000.
"The question is, though, whether these costs would hold up on a large scale, and whether it is something that can even be done on a large scale," Stone said. "I believe it can."