Violent Alzheimer's patients in South Carolina routinely are turned away from nursing homes, leaving these fragile people and their families with few options, experts on the disease say.
State leaders, researchers and caregivers spent a year studying the way we handle Alzheimer's patients. A report earlier this year called "Conquering the Specter of Alzheimer's Disease in South Carolina" came up with these recommendations:--Develop incentives for health care providers to rehabilitate and treat combative patients.--Establish standard dementia-related training for staff of any state-licensed nursing home.--Use the Lt. Governor's Office on Aging as the single point of entry for people seeking assistance with Alzheimer's-related needs.--Create a "silver alert" system for rapid recovery of patients who get lost.--Create more defined standards for facilities that advertise special Alzheimer's units.--Study ways to make it easier for Medicare patients to get treated if they develop aggressive behaviors.
Other states are doing better.
North Carolina has two state-owned facilities solely for Alzheimer's patients with combative behavior so severe they can't be housed in traditional nursing homes, even those with designated Alzheimer's units.
The Lowcountry, with all its nursing homes and hospitals, has just two beds devoted to these patients.
Dr. Edgar Weiss, a geriatric psychiatrist at the Medical University of South Carolina, runs the Institute of Psychiatry's unit that has these two slots.
He recalled a phone call several years ago from a nursing home in the area:
A dementia patient had hit another with a cane and needed special care.
The patient did well at MUSC, but his old nursing home refused to take him back. When other nursing homes learned about the patient's history of aggression, they also said no.
"He stayed with us for 11 months, and he wasn't a problem at all," Weiss said. "It's just incredibly difficult these days to get someone in a nursing home who gets agitated."
The lack of options for these patients has a huge ripple effect, he added. Family members sometimes quit their jobs to take care of their loved ones; hospitals house them in emergency rooms and other units that aren't set up to handle the complex needs of these patients.
"The effects go from the patient to the family and then to society," Weiss said.
Most assaults involving Alzheimer's patients are minor and aren't reported, but sometimes people get hurt. Last fall, Dwayne Walls, an Alzheimer's patient, was beaten with a cane by another dementia patient in a nursing home near Walterboro. Walls died a week later.
The failure to care for Alzheimer's patients who become violent comes amid what some have called the "gray plague" — a startling increase in the number of Alzheimer's cases.
In 2000, 67,000 people in South Carolina had Alzheimer's or a related disorder. Next year, that number is expected to reach 80,000.
"The age wave has crashed to shore and we are not ready," Leeza Gibbons, a talk show host and Alzheimer's disease advocate, wrote in the preface to a state task force report earlier this year.
The report, "Conquering the Specter of Alzheimer's Disease in South Carolina," called for better-trained nurses and aides and more options for patients who become combative.
Many people associate Alzheimer's with memory loss, but severe behavior problems also are a natural part of dementia-related diseases. This transformation of a loved one's personality can be particularly upsetting, especially for aging spouses, said Fran Emerson, program director of the Charleston branch of the Alzheimer's Association.
"You might have an 85-year-old woman call and say she's been married for years and years, and that it's the first time her husband raised his hand to her," Emerson said.
When this happens, family members need a place where they can quickly get "skilled psychiatric intervention," she said. "A bed in a nursing home won't do, and a normal hospital bed won't do."
Well-trained and highly engaged staff often can effectively treat these combative episodes, said Dr. Jacobo Mintzer, a professor of psychiatry, neurology, physiology and neuroscience at MUSC.
"At any given time, 70 percent will exhibit some form of agitation, so it's not the exception, it's the rule. The good news is that if the needs are met, the aggression tends to disappear," he said.
Mintzer, a leading researcher in the study of aggression and Alzheimer's, said the key is to understand a patient's "context," something he learned early in his career from a patient.
The patient was Hispanic "and the most wonderful person in the world, but at 6 p.m., he would become a gladiator." Mintzer said the facility's staff tried medications and physical restraints. Nothing worked. Their only clue: The outbursts often happened at 6 p.m., when they removed his clothes to ready him for bed. By chance, Mintzer happened to talk to a receptionist who was Cuban. "She said no Cuban man would ever dream of sleeping without his underwear."
The staff stopped taking off his underwear, "and the aggression disappeared just like that."
Mintzer said it was an example of how patients often act out because they can't communicate pain, discomfort or other feelings and emotions.
"The best way is not to medicate; it's to meet the patient's need." That means nurses and aides need to better understand a patient's history. Patients who are bored may need more stimulation. Staffers need to understand what triggers outbursts and then document these triggers for other caregivers.
"That's as vital as the patient's name and the food they eat," he said.
Nearly 20 years ago, North Carolina recognized the need for special units designed to handle combative Alzheimer's patients. Today, it has two facilities, Black Mountain Neuro- medical Treatment Center in the western part of the state and Longleaf Neuro-medical Treatment Center in the east. Together they have 104 beds for these patients.
Unlike some traditional nursing homes, Black Mountain's center allows residents free movement to wander or move to different beds.
"You often can't control wandering or pilfering, and if you do restrict them, it interrupts the place where they are in their minds," said Gail West, director of the center. "They may be cleaning their house or doing the laundry, and when we interrupt that, we're stopping the things that have real meaning to them."
At Black Mountain, staff spend time learning about their patients' pasts: names of family members, favorite pets, their work with civic groups and hobbies. That way when patients feel anxious, they use this information to get their attention and redirect negative feelings to something positive and comforting.
All this takes more staff and money than normal nursing homes, West said. Black Mountain has 12 certified nursing aides for 66 patients, a ratio of less than one to six. In addition to these aides, the home has two registered nurses, a psychologist, social workers and other rehabilitation aides on duty during the day shift.
"Staffing levels are the key to making it work," West said, estimating that her facility's per-day rate is about twice that of a typical nursing home. The state's Medicaid typically pays for most patients' care.
In its task force report, South Carolina officials cited the Black Mountain facility as a model. "We don't have anything like that in South Carolina, and it's something we need," Emerson of the Alzheimer's Association said.
But doing something that ambitious will take political will during a period of scarce resources, Weiss said. His geriatric unit had 10 beds for aggressive Alzheimer's patients but lost eight to recent budget cuts, he said, adding that he sometimes wonders why people will pay extra sales tax for roads but complain about higher taxes to better care for themselves and their loved ones in their final days.
"You can't put aging under the mat and forget about it," Weiss said. "This is a serious problem that will have major impact on families and our society."
Why Alzheimer's patients get agitated
The disease destroys brain cells that control inhibitions and social functions learned in childhood.Patients may be responding to delusions and hallucinations.They may be cold, constipated, hungry or in pain and may be frustrated by their inability to communicate these feelings.Improper medications can trigger outbursts.Frustration and depression over feeling helpless.Paranoid feelings.Major environmental changes, such as a move to a new home or change in a comforting routine.Alzheimer's Association, Alzheimer's Society