Uncooperativeness and Alzheimer's
In a memoir about caring for her husband, who had Alzheimer's disease, Lela Knox Shanks recalls that he once shouted at her, "Get out of here! You're an impostor trying to break up my marriage!" Afraid for her safety, she ran out the back door, sat in the sun, and cried, trying to figure out what to do. After 30 minutes or so, she tapped hesitantly at the back door. Her husband opened it, and exclaimed in relief. "Where have you been?" he cried. "I've been looking all over for you. I was just getting ready to call the police and report you as missing."
The brain damage caused by Alzheimer's disease can make a person like Shanks's husband act in unusual, distressing, or even darkly humorous ways. Anxiety, aggression, resistance, restlessness, agitation, shouting, paranoid accusations, and sleeplessness are some of the most common forms of difficult behaviors associated with the illness. Try not to take such behaviors personally. Because these symptoms are caused by a damaged brain, a person suffering from Alzheimer's-related dementia can't control himself and isn't acting this way intentionally. It's very important not to react to your loved one as if he were fully functional, even if he's having a "good day" and seems much like his old self.
Some people with Alzheimer's disease, or AD, are rarely or never loud and aggressive. But others may suffer a change in personality and become uncharacteristically combative. One particularly difficult form of Alzheimer's behavior -- an outburst of anger in response to a seemingly trivial event or situation -- is known as a "catastrophic reaction." This response may reflect the continual overwhelming frustration that many AD sufferers feel.
Coping techniques for caregivers
According to a study by the Rush Alzheimer's Disease Center in Chicago, it's usually the primary caregiver -- a spouse or adult child -- who bears the brunt of any aggressive outbursts. Almost 80 percent of uncooperative behaviors occur during the intimate activities of daily life, such as dressing, bathing, and going to the toilet. But catastrophic reactions can also happen as a result of sudden changes in the environment or stresses like an accident or family disagreement.
Suzanne Alexander, a social worker with the Mills-Peninsula Hospital Wellness Center in the San Francisco Bay Area, gives this advice on dealing with stubbornness and aggression: "First, depersonalize the behavior. You need to realize it isn't aimed at you. Your loved one isn't doing this to cause trouble. Second, see the resistant behavior as a form of nonverbal communication. Try to figure out what your loved one is trying to say, then address the issue."
Often the resistance is rooted in fear, according to the Alzheimer's Association. For example, people with Alzheimer's may resist taking a bath because being naked and enclosed in a shower frightens them. They may feel humiliated by their loss of ability and react to this emotion when asked to do something they don't understand. In the earliest stages, they may become angry at any suggestion that they are no longer fully competent, because the reality of what's happening to them is too terrifying to acknowledge.
Resistance may also have medical or physical causes, which can range from medication-induced confusion to poor vision or hearing to an additional illness. When someone suffering from dementia is also in physical pain or discomfort, he or she may have trouble doing even the simplest task. If you suspect that any of these added problems might be the cause, arrange for a medical exam.
Defusing a potential crisis
Another thing that can undermine cooperation between you and your loved one is difficulty in communicating. Even if you're normally an impatient sort, be patient and calm when dealing with someone who has Alzheimer's. Since brain damage from the disease has undermined the person's ability to understand normal speech, use short, simple questions, speak slowly, and keep the your voice quiet and calm, especially if there's a problem -- shouting will only upset your loved one further.
It also helps to always approach a person with Alzheimer's from the front, so that he or she can see you coming; a touch from behind may be frightening or even terrifying. These strategies are also helpful in case the person has related medical problems with hearing or vision. Remember that your mood and facial expression are more important than the words you say. A sense of humor may serve you better during this period than at any other time in your life. Use cheerfulness and a light touch whenever you can.
No matter how frustrated you feel, remind yourself your loved one isn't trying to provoke you. Don't get angry or argumentative; it will only make things harder for everybody. If your loved one becomes more and more agitated, stop what you're doing and give both of you a chance to calm down. Reassure him or her when this happens; a hug or a pat on the back, when possible, will go a long way toward improving the situation.
The Alzheimer's Association offers these tips on understanding and managing difficult behavior:
In a daily log, note what was happening just before each outburst or other problem, so you can identify the factors that triggered it. What you learn may surprise you.
When your loved one is being resistant, try to figure out whether there is something he or she wants or needs, like relief from pain or a trip to the bathroom.
Let your loved one be as autonomous as possible in performing the tasks of daily life.
If there's resistance that is due to a troubled family history, find someone else to intervene.
Don't carry the burden alone. Ask for help.
"Even in my greatest rage and anguish it never occurred to me that I would not be able to deal with [my husband's] behavior or to find solutions to the problems we faced," wrote Lela Shanks in her memoir about Alzheimer's. "I knew my care would depend not upon what he said or did but upon how I handled my negative emotions and how creatively I dealt with his problem behavior... Our determination to 'talk AD away' and to make the patient behave as before closes the door to solutions. It is out of an accepting attitude that creative techniques are born."
Behaviors. Alzheimer's Association. 2020.
Michael Castleman et al. There's Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer's. Putnam Publishers.
Howard Gruetzner, M.Ed. A Caregiver's Guide and Sourcebook. John Wiley and Sons.
Nancy L. Mace, M.A., and Peter V. Rabins, M.D., M.P.H. The 36-Hour Day. Johns Hopkins University Press.
Lela Knox Shanks. Your Name Is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's. The Penguin Group.