By Beth Witrogen
People with Alzheimer's disease often act as if their minds are caught in an endless tape loop. They may ask the same question 20 times in an afternoon, pace a stretch of floor for hours, or hum a tune that never seems to run out of verses. Many have a condition called echolalia, in which the patient repeats words endlessly or echoes a phrase. If you're caring for someone with the disease, this sort of thing may often make you feel like crying or tearing your hair.
It's important to know that your loved one has no intention of annoying you or pushing you to the brink. A continually repeated question, for instance, doesn't mean that he or she isn't listening to the answer. The 36-Hour Day, an excellent handbook for families coping with Alzheimer's, explains that this repetition may be a sign of the insecurity and uncertainty caused by memory loss. In the later stages of the disease, damage to the memory may be so severe that the sufferer will not even remember asking the question. In some cases, he or she will remember asking the question, but cannot remember your answer.
Through these words and actions, the person with Alzheimer's may also be expressing a specific concern, asking for help, or coping with frustration in the only way he or she knows. By understanding the reasons behind repetitive behavior, you can help provide comfort while preserving your own sanity.
"Reassurance is an excellent tool to use in managing difficult behavior," says family-outreach specialist Jan Oringer of the Family Caregiver Alliance in San Francisco. "Often that behavior is due to anxiety or fear, and you need to be sensitive to your loved one's emotions. Be aware of your touch, tone of voice, not rushing or being too anxious."
If your loved one constantly asks who you are or keeps asking for a long-dead friend or spouse, it may be out of worry that there's nobody to care for him or her. By the same token, repeated questions about the next doctor's appointment may mean that he or she has health concerns or is afraid of the doctor.
Focus on the emotion rather than the behavior. Instead of simply answering such questions every time they're asked, reply with words of comfort. When your loved one wants to know who you are, say in a calm, soothing voice who you are and assure him that everything is fine, that you're there and will take care of him. Add that there will be plenty of food tonight, and that he or she is fortunate to have such a great doctor. If words don't help, you may be able to ease his fears by putting on music, giving a shoulder massage, taking a walk outside, or another pleasant diversion.
Your loved one might have other reasons for saying the same things over and over. Some people with dementia may use repetition as a way to keep a conversation going when they know they're not holding up their end, says Dr. William Molloy, a professor of medicine at McMaster University in Hamilton, Ontario, and director of the university's Memory Clinic. Again, a few reassuring words or a little redirection might help.
Sometimes, of course, repeated questions may not stop despite your best efforts. In a memoir about caring for her elderly husband with Alzheimer's, Lela Knox Shanks recalls, "In the beginning, when Hughes asked the same thing over and over again, I wanted to scream. I learned to write notes to Hughes during that stressful period. Since he asked the same questions every day, I accumulated a set of stock answers that I flashed to his questions. By keeping silent I was better able to remain calm, [and] Hughes never questioned why I was communicating with him through signs."
Other forms of repetitive behavior are often just as frustrating as nonstop questions. Indeed, it can be heart-wrenching to see a formerly gifted, accomplished person spend the afternoon pacing the kitchen or folding the same towel. He or she may even walk into a corner, and, unable to turn around, keep marching in place. But with gentle reassurance and guidance, you can help break this pattern of behavior.
Instead of saying, "Quit walking around the kitchen," you might suggest that the two of you take a walk outdoors. But -- very important -- you should also ask yourself if the behavior really needs to be stopped. Your loved one may feel competent and helpful when he or she is folding that towel 50 times, and the towel won't mind, either.
Here are other strategies from the Alzheimer's Association and Family Caregiver Alliance to help you cope with repetitive behavior:
- Look for patterns. Keep a log to determine if the behavior occurs at a certain time of day or night, or whether particular people or events seem to trigger it.
- Keep track so you can tell whether your loved one might be hungry, cold, tired, in pain, or in need of a trip to the bathroom.
- Check with the doctor to make sure your loved one isn't suffering from pain or the side effects of medication.
- Speak slowly and gently, and wait for your loved one to respond.
- Don't point out that he or she just asked the same question.
- Steer him or her with a favorite activity: he may just be bored and need something to do.
- Try to build some calming activities into the day, such as taking walks together. The exercise and fresh air will be good for both of you.
- Use signs, notes, and calendars to help decrease anxiety and uncertainty. In the early stages of Alzheimer's, when your loved one can still read, he or she may not need to ask about dinner if a note on the table says, "Dinner is at 6:30 p.m."
Talking with friends, a counselor, or a support group about your grief and frustration at the damage caused by Alzheimer's also leaves you free to cope with its reality and to cherish your loved one despite all the losses.
"So many times we talk about caregiving in a somewhat negative fashion," says Oringer, of the Family Caregiver Alliance. "But I see a lot of families where this has been an opportunity to grow, and to find more adaptive ways of solving difficulties. These aren't just caregiver skills, but life skills all of us need."
Caring for Alzheimer's: Behaviors Alzheimer's Association. Updated October 4, 2010.
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 & 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.
Carol Simpson. At the Heart of Alzheimer's. Manor HealthCare Corporation.