Helping Care-Givers Keep Their Cool : Workshop reminds those who are taking care of dementia patients that behavior problems are part of the disease.

Getting angry is no way to help someone who has Alzheimer’s disease or some other form of dementia, but it’s a natural reaction to behavior that is unexpected, disturbing and difficult to manage.

So is the guilt that inevitably follows an outburst of anger directed at someone who is helpless.

If you are caring for a loved one suffering from dementia, you’ve no doubt encountered the kinds of difficulties that Debra Lynn Cherry, program director of the Alzheimer’s Assn. of Los Angeles, discussed during a recent workshop in Orange on “Coping With Problem Behaviors.”

And, like the some 75 people who attended the workshop, you’ve probably gone through many cycles of anger and guilt that might have been avoided if, in the midst of a crisis, you’d heard a calm inner voice reminding you that behavior problems are part of the disease--not deliberate attempts to make your life difficult.

Cherry pointed out that dementia victims can be not only forgetful, but also stubborn, defiant, hostile and even violent. They may refuse to eat, resist the help they need with bathing and dressing, wander away from home and get lost, insist on driving when they are no longer capable of holding a license, make inappropriate sexual advances, or shove or strike a person trying to offer assistance.

Such behavior can push care-givers--whose 24-hour-a-day job is often physically and emotionally exhausting under the best circumstances--to a point where they have nothing left to give.

“They get worn down and may end up placing a relative in a nursing home before it’s necessary,” Cherry observed during an interview.

Some burned-out care-givers may become so frustrated that they resort to violence. Although such cases are rare, “it may happen if the care-giver has no other outlets and is completely burdened to the point of losing control,” Cherry cautioned.

She said her two-hour workshop at the Orange Senior Citizens’ Center was designed to arm care-givers with practical information that will help them avoid burnout. (The workshop was part of a series sponsored by the FHP Foundation and presented by UCLA’s Edward Roybal Center for Applied Gerontology in cooperation with the Orange County Care-Giver Resource Center. For information on future sessions, call (714) 538-9633.)

Cherry told the care-givers in her audience that they need to learn how to anticipate, interpret and manage difficult behavior instead of wearing themselves out with vain attempts to eliminate it.

Jean Bennis of Tustin was among those who went to the workshop with a hunger for suggestions to ease the stress of caring for a recalcitrant dementia victim.

Bennis takes care of her 83-year-old mother, who has Alzheimer’s disease and must be watched at all times because she has difficulty maintaining her balance.

“It’s frustrating not to be able to leave her alone for one minute without worrying that she’ll fall,” Bennis said during a break in the workshop. But what brought Bennis to Cherry’s talk was frustration over the kind of behavior that makes care-giving seem more like a form of punishment than an expression of love.

“My mother gets angry if she doesn’t get her way,” Bennis explained.

For example, when they are walking together, her mother will sometimes insist they go in a different direction. If Bennis doesn’t comply, she gets jabbed with an elbow, or her mother grabs her by the arm, wrist or hair and squeezes so tightly that her hand must be pried off.

Bennis explained: “I try to calmly say, ‘Mom, please turn me loose so we can go.’ But sometimes I’ll get impatient and raise my voice. And later I’ll think, ‘You should have had more control.’ I try to remember that she’s very sick.”

Joanne, a workshop participant who asked to remain anonymous, also has difficulty dealing with the anger of her mother, an 85-year-old victim of Alzheimer’s disease.

“She’s angry because she was always a very independent woman and she knows she won’t ever be again,” Joanne said. “She will get stubborn and refuse to eat or go to the doctor. She fights for every bit of independence.”

Since her mother moved in with her in January, Joanne has seen her own stress level climb dramatically. “I really have to manage it better than I’m doing when I lose my cool,” she said.

Cherry offered Joanne and the other care-givers in her audience a number of stress-reducing strategies for coping with problem behavior.

First, she advised, make sure that dementia victims aren’t having a reaction to medication or suffering from a correctable vision or hearing problem that is adding to their confusion.

“Anytime you see your relative suddenly get worse, take him to the doctor (so you may be able to) rule out health or medication problems,” Cherry said.

“If we understand what causes problem behavior, we can frequently figure out what to do,” she added.

Sometimes, restoring calm is simply a matter of making the patient more comfortable.

Cherry explained: “People with dementia may not tell you if they’re thirsty, hot, cold or hungry. They may become delirious or so fatigued that they get more confused. Then they strike out because they’re feeling a lot of discomfort and don’t know how to communicate that.”

A dementia victim who becomes hostile may be reacting to external as well as internal disturbances. For example, Cherry noted, problem behavior tends to occur more often after sundown, when confusion is magnified by darkness, and on weekends, when there tends to be an unsettling break from the normal routine.

She said keeping the home well lighted at night and planning activities on weekends can have soothing effects.

It also helps to maintain a quiet, predictable atmosphere at home. Just having the television on can be disturbing, noted Cherry, who recalled one dementia victim to whom the characters on TV were so real that she introduced them to visitors.

Traveling also tends to trigger problem behavior. “It’s horribly confusing. Their brains just can’t cope with it,” Cherry said.

“Take a trip,” she urged, but leave the dementia victim behind--”and don’t feel guilty.”

Care-givers who have difficulty getting loved ones to bathe, dress and groom themselves--or accept help--without a struggle may need to examine the way they communicate.

“You may need to change the way you talk to them,” Cherry said, noting that instructions may have to be repeated frequently. “People with dementia don’t have the capacity to learn. We are the intact ones. We’re the ones who have to make the adaptation.”

When trying to get your loved one to complete a task, give simple directions, one step at a time, Cherry advised. Speak slowly and clearly, in a reassuring tone. Remember that any stress or irritability in your voice is likely to cause frustration that leads to resistance rather than cooperation.

“Try not to be condescending,” Cherry added. “It’s easy to make parallels between people with dementia and children. But at any given point, they have the emotional capacity of adults. If you talk to them like they’re children, they usually know it and that will upset them.”

Often, the best way to handle problem behavior is by providing a distraction. This works particularly well with those seldom-discussed but common incidents involving inappropriate sexual behavior or lowered inhibitions.

Cherry recalled one woman with dementia who took her clothes off at a party because she was hot and a man who made sexual advances toward his grown daughter because he thought she was his wife.

The most important thing to remember in cases like these is not to overreact, Cherry said. “Try to be matter-of-fact. Stay calm and, in a gentle way, try to distract the person and redirect him to something more appropriate.”

This technique is also useful when dementia victims insist on driving. One woman in Cherry’s audience said that her father, who has Alzheimer’s disease, makes an attempt to drive as soon as he awakes each day.

The daughter has tried to reason with him, explaining that he can’t drive because he has no license or insurance. But, like most dementia victims, he doesn’t respond to logic.

Cherry told the woman that her father’s desire to get into the driver’s seat may be a sign that “his life is too unstructured.” She suggested a daily visit to an adult day care center to relieve his boredom, give him a sense of independence--and keep his mind off driving.

She pointed out that walks and household chores can also be effective distractions. However, she acknowledged, when dementia victims unleash frustration and hostility, it’s not easy for care-givers to stay calm enough to provide distractions because they have their own anger to contend with.

It might help, Cherry noted, to remind yourself not to take it personally when your loved one gets agitated and takes it out on the nearest target.

And remember, she added: “You set the tone. If you get angry and worked up, their anger will escalate, too. Walk away, return and start fresh.”

Helen Pollchik, a workshop participant from Anaheim, said that learning to walk away from her husband’s angry outbursts has made a big difference in her life. She said her 79-year-old husband, who has Alzheimer’s disease, has gone through rages during which he has overturned the living room furniture. But he has calmed down since she began to relax and accept his behavior as part of the disease rather than letting it frustrate her.

Pollchik said Cherry’s workshop reminded her that, in order to be able to handle problem behavior in a way that resolves rather than escalates difficulties, care-givers must give themselves time to rejuvenate.

To last as a care-giver, “you have to be good to yourself,” she said.