For more than five years, Phyllis Edelstein managed to care for her husband Richard in their Long Island home as his dementia slowly progressed. She felt fortunate to have found, and to be able to pay for, a live-in couple to help her.
But last fall, "he was becoming more negative about things like showering," she told me. "There'd be flare-ups of anger." She saw her husband, a retired dentist, try to strike his hired helper one day, and she was startled, as they watched a Western together, to see him jump up and lunge toward the TV, as if he intended to beat up the bad guy. "It reached the point where I was uncertain being alone with him on weekends," she said.
In January, she moved Dr. Edelstein, 82, into a nearby assisted living facility. He seemed to be settling in, though he did once hit another resident. But one Saturday last spring "he just lost it," Mrs. Edelstein said. "A tremendous physical outburst." He broke planters, upended furniture, pulled a closet door off its hinges.
Dr. Edelstein was found to have a urinary tract infection, long known to cause suddenly aggressive or bizarre behavior in dementia patients. But although his infection was treated, he hasn't regained his previous level of function. He remains in a hospital psychiatric unit, where doctors are trying to adjust his medications so that he is calm but not somnolent.
Let's be clear: physically aggressive behavior arises in a sizable minority of dementia patients — a German study of nursing home patients published last year put the proportion at nearly 29 percent – but those most endangered are the people with dementia themselves and their caregivers. It is irrational to fear an assisted living/dementia care complex near a residential neighborhood, as some Minnesotans did a few years back, as though its elderly residents would break out and menace passers-by.
But violent behavior presents a particularly knotty problem for families. They know their loved ones with dementia generally don't intend to cause harm. Yet when confused, fearful, angry or in pain, they may kick, hit, bite, throw or shove.
A Montana woman named June recently told me that her husband, diagnosed with Alzheimer's three years ago, was becoming more irritable and resistant — and sleeping with a loaded gun. At his doctor's insistence, she and her sons removed his three firearms from the house, a blow to a longtime hunter. Yet Joe still carries a canister of pepper spray in his pocket when he leaves the house.
Aggressive behavior and fears that a person will harm himself or others are among the most common reasons caregivers consider placing a family member in an institution, an Alzheimer's Foundation of America survey found last year. But facilities, concerned about safety for their staff and other residents, aren't always willing to take on that challenge, either.
Most of the time, families and staff can use behavioral approaches to soothe aggressive responses, said consultant Susan Gilster, founder and former director of the Alois Alzheimer Center in Cincinnati. She recalls a former resident, who started yelling and swinging when aides tried to rouse him from bed at 8 a.m.
Facilities have their routines, but this center's motto was "person before task," Ms. Gilster said. "The person is more important. The task eventually gets done." The man did fine when allowed to sleep until 10, then given a light breakfast. Some men at the facility didn't get shaved until afternoon if that made their day go more smoothly.
"Why fight over these things? Nobody wins," Ms. Gilster said. "Allow people to do what they want to do, and a lot of these behaviors go away."
The Alzheimer's Foundation of America provides information on such strategies and also cautions caregivers to look for medical problems — infection, pain, depression — that can cause people who can't describe their symptoms to act out. The environment — crowds, noise, disrupted routines — matters, too. "They can't handle that much stimulation, and it upsets them," Ms. Gilster said.
Medications to control aggression and other problem behaviors, particularly antipsychotics like olanzapine (trade name: Zyprexa), quetiapine (Seroquel) or risperidone (Risperdal), represent a last resort. These have serious side effects and have been shown to increase the risk of death; the Food and Drug Administration requires "black box" warnings on their packaging.
Still, "in some circumstances, where it becomes a question of safety of the patient himself, the family or staff, the other residents, some of these medications are a possibility," said Dr. Ronald Petersen, director of the Mayo Clinic's Alzheimer's Disease Research Center.
He cautioned, however, that "we have to frequently reassess the need for them." Dementia symptoms shift over time. The drugs "may be useful now and not needed in two or three months," he said.
If you are thinking that these are a demanding and sometimes heartbreaking set of responses — ceaselessly trying to control an ailing person's environment, to adapt the way you communicate, to consider dangerous drugs — well, yes. The public generally thinks of dementia in terms of memory loss; sometimes, that's the least of the problems.
"These are difficult decisions," Dr. Petersen acknowledged. "There's no easy solution."
Phyllis Edelstein, mourning the man she has known since a blind date 62 years ago, is considering where he can be cared for when the hospital releases him. He can't return to his previous facility.
"We're trying to see what our next step is," she said. She has yet to figure it out.
Paula Span is the author of "When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions."
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