Ann Mayer would love to go to the Utah Alzheimer's Association candlelight vigil tonight. On Saturday she said, "If I can get someone to baby-sit her tomorrow night, I'm going."
The person who would need watching if Mayer were to attend the vigil is her mother, Josephine Salsetti, who has been suffering from Alzheimer's disease for four years and requires constant watching.Salsetti is "at the point where she doesn't know anybody, hardly, you know. She can get around. She doesn't know where the bathroom is anymore," the daughter said.
She worries that her mother may fall down or otherwise injure herself if nobody is there to keep an eye on her.
The association plans to hold its first-ever vigil, a ceremony that has been dubbed "A glimmer of hope," starting 8 p.m. at the Capitol. The association invites all interested Utahns to "light a candle with us to remember Alzheimer's disease victims and their families."
Experts on the degenerative brain disorder are to speak about new research, and family members who help care for Alzheimer's victims will be sharing notes.
The disease is a cruel one, imposing what amounts to a sentence of death without dignity on many of its victims. It can start in middle age or old age. As it progresses, the victims lose more and more of their ability to think and even their awareness of their surroundings.
They are afflicted with memory loss and confusion and sometimes become fearful because they don't know where they are. Often, victims develop a tendency to wander, which can be dangerous.At the same time, Alzheimer's inflicts terrible burdens on family members. About 70 percent of the state's estimated 25,000 Alzheimer's victims are cared for at home, according to the associ-ation.
A new poll shows that Alzheimer's disease poses a terror that cuts across demographics.
According to a Dan Jones and Associates poll commissioned by the Deseret News and KSL, 54 percent of Utahns are concerned that they, or members of their immediate families, will get Alzheimer's.
The poll, carried out March 28 and 29 with 607 interviews, has a possible error rate of plus or minus 4 percent. It shows that almost everyone sampled knew of the disease, and that concern about Alzheimer's is fairly uniform across all age brackets.
Those who were "very concerned" about the chance of getting it - either that they would come down with it themselves or members of their family would - amounted to 19 percent of those interviewed.
The youngest group, ages 18 to 30, were the most worried about it, with 21 percent answering they were very concerned. For Utahns from 31 to 44, a total of 15 percent were very concerned; those 45 to 55, 20 percent; those 56 and above, also 20 percent.
A similar near-uniformity of responses were tallied from those who were somewhat concerned, ranging from 29 percent for those 18 to 35 years old, to 40 percent of those 45 to 55.
The recent disclosure that former President Ronald Reagan has Alzheimer's had only a minor effect on Utahns' concerns, since they already knew about the disease. A heavy majority - 88 percent - said their concern was unchanged after the announcement.
About 1 percent more were much more concerned, 9 percent somewhat more concerned and 1 percent somewhat less concerned.
A surprisingly large number - 29 percent - said a family member has Alzheimer's disease. Those who know a friend with Alz-heimer's amounted to 25 percent of the sampling, and 28 percent said they knew an ac-quain-tance with the disorder.
Those who understand the disease must know what Mayer and Salsetti are going through. Mayer has to live in her mother's home and care for her, and it's an enormous project.
"I had to quit my job, everything," she said.
"It's like being a prisoner, it really is. I haven't been out of this house in over a month and a half, other than just to go down and get toilet paper and other necessities.
"I don't have any friends, because I'm just with her," she said of her mother.
"She needs constant care, all the time."
Four days a week a nurse comes to help bathe her mother. Also, the Utah Alzheimer's Association picks up Salsetti daily and takes her to a neighborhood care facility, then returns her in the evening.
"That's enough to let me get the house straightened up," Mayer said. "But I find that I'm regressing, I'm getting into a depression where I don't even get out of the house."
She feels that she has a little relief if her mother watches television. But that's not long enough for Mayer to even go outside and do yard work.
"They just forget about who they are, where they're at. They only know the past. They don't know the future or right now," she said.
Mayer said she has feelings of great tenderness for these victims.
"They're like a little baby, and they're very precious, and they're fragile . . . . They're scared," Mayer said.
Deseret News/KSL poll
How concerned are you that you or a member of your immediate family will get Alzheimer's disease?
VERY CONCERNED 19%
SOMEWHAT CONCERNED 35%
NOT TOO CONCERNED 33%
NOT AT ALL CONCERNED 13%
DON'T KNOW 1%
Poll conducted March 28-29, 1995. Margin of error +/-4% on interviews of 607 adults statewide. Conducted by Dan Jones & Associates. 1995 Deseret News.