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Saturday, July 04, 1998
Alzheimer's caregivers need support
Nursing care experts say those who tend to family with a degenerative disease face the chance of burnout.
By Lori Roniger
Review-Journal
Eileen Pickering describes how her mother, Eleanor Busse, works 24 hours a day.
Busse, also of Las Vegas, is the primary caretaker for her 82-year-old husband, who has Alzheimer's disease.
"The family's totally affected," Pickering said. "We're all exhausted."
As her father's condition worsens, numerous family members are helping with his care, often assisting in tracking him down when he wanders off at any hour. Wandering is common in the middle stages of the disease, and patients often go out dressed inappropriately and cannot find their way home. Pickering said her mother is particularly affected.
"The caregiver needs relief," she said.
"(Alzheimer's) is a disease that consumes someone 24 hours a day," said Joyce Simard, vice president of Alzheimer's programming for CareMatrix Corp., a Needham, Mass.-based company that operates assisted living communities. Simard recently led a seminar at Canyon Gate Country Club on tips for Alzheimer's caregivers.
Rein Tideiksaar, a physician assistant and gerontology specialist at Southwest Medical Associates, urged caregivers "to take time out for themselves."
"If you get burned out, then you can't take care of the individual," he said.
Women are more likely than men to be affected by the stress of giving care. Eighty percent of Alzheimer's caregivers are women, according to a 1996 Alzheimer's Association survey.
Initial prompt diagnosis of the disease is key to improved treatment.
Pickering said her family had suspected for about two years that her father had Alzheimer's disease. However, the cardiologist he regularly visited did not immediately recognize his symptoms.
According to the Alzheimer's Association, disease warning signs include memory loss that affects job skills; difficulty performing familiar tasks, such as preparing a meal; forgetting simple words and inappropriately substituting words; confusion about time and place; misplacing things inappropriately, such as putting an iron in a freezer; rapid mood swings; dramatic personality changes; and long-term disinterest in one's usual pursuits.
Early diagnosis allows for a greater likelihood of more effective pharmaceutical treatment, which may slow disease progression and improve memory, according to Tideiksaar. He said medication is typically less effective in later stages of the disease.
"Studies have shown that these medications can enhance functions, such as walking, eating and bathing, and also decrease behavioral manifestations, such as aggression and agitation," said Tideiksaar. "It also helps to reduce caregiver burden and stress."
Earlier recognition of Alzheimer's disease also provides caregivers with more time to consider future care options, such as nursing homes. In the advanced disease stages, patients can require assistance with everything from eating to using the bathroom.
Tideiksaar urged caregivers to recognize when it's time for a nursing home or round-the-clock, in-home care. This enables the caregiver to "come and go as they want and to be there for the quality moments with the loved one," he said.
However, Phyllis Montavon, executive director of the Southern Nevada chapter of the Alzheimer's Association, expressed concern about the quantity of skilled nursing care facilities available locally. She said the numerous group home and assisted living facilities in the community are needed but are not adequate for people who require round-the-clock medical care.
Simard said denial sometimes can be a barrier to dealing with a loved one's Alzheimer's diagnosis, which inevitably leads to terminal degenerative illness and death.
"Denial is probably one of the key issues we struggle with at the beginning," Simard said.
Las Vegas resident Carlotta Hurless, 55, who attended Simard's lecture, said her mother is in the advanced stages of Alzheimer's disease and lives in a nursing home. Now 81, she worked until she was 75.
"You start remembering how she was," Hurless said. "You don't have that person. You don't have your best friend anymore."
However, Simard said an Alzheimer's diagnosis doesn't mean the end of life.
"We certainly realize that Alzheimer's disease is a devastating disease," she said. "But people can live with it."
Simard said President Reagan's admission of his Alzheimer's diagnosis in 1994 made a difference.
"It's encouraged people that, yes, they can have a life," she said. "Understand that just because someone doesn't have memory doesn't mean they're not a viable person."
Four million Americans have Alzheimer's disease, and that total is expected to balloon to 14 million in 2050, according to the Alzheimer's Association. One in 10 Americans older than 65 and nearly half older than 85 have the disease.
In Southern Nevada there are 21,000 people with Alzheimer's disease, according to the Alzheimer's Association. The Nevada State Demographer's office reports that there were 248,988 Clark County residents age 65 and older in 1997, and it projects the number to increase 56 percent to 387,193 in 2004.
In the earlier stages of the disease, Simard recommends caregivers involve someone in aspects of their life in which they used to participate.
"You're not doing anyone any favors by doing everything for them," she said.
She suggested that if they used to make sandwiches, but can no longer do so, they can hold the bread during the sandwich-making process.
For patients in the middle stages of the disease who have increased difficulty in performing activities independently, Simard recommends simple hairstyles and clothes.
"Keep everything as simple as possible so people can maintain their independence," she said.
Protecting irreplaceable items is also important.
"Don't let them have the only copy of the will or the real checkbook," Simard said. "Have them copied."
Some lifestyle adaptations require additional creativity. Simard said a woman who could not get her Alzheimer's-afflicted husband to sit down served him his food, including items such as vegetables, in ice cream cones so he could eat everything to go.
In the later stages of the disease, when patients may refuse to eat, Simard said it could be time for the person to die.
"It is sometimes time for them to go," she said. "It is not a painful death. It's us who are in pain."
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