Repetitive (perserverative) behaviors are not unusual in any form of dementia, but they are especially common in frontotemporal dementia, vascular Parkinsonism, and Alzheimer's. Dementia may make a person do something over and over. This can be repeating a word, a gesture, or an activity, or wanting to undo an activity as soon as it is finished. Dealing with repetitive behaviors can be stressful for caregivers, family members, and dementia patients alike.
What are people with dementia trying to tell us with repetitive behavior?
In Alzheimer's disease, there is a predictable pattern of short-term memory loss. As the condition progresses, not only does short-term memory deteriorate, the emotional connections to short-term memory deteriorate. Even when someone in the middle stages of Alzheimer;s remembers an event or an instruction, they may not feel like they remember it. They lose confidence in their memory, and attempt to compensate with repetition.
This phenomenon sometimes occurs in other forms of dementia, but in people who do not have Alzheimer's, the problem more often is anxiety. People who have dementia lack the reasoning skills to take charge of their day to day lives. They become concerned about how they pay their bills, or stay in their homes, or, later in the disease, get a meal or get to the bathroom. Or repetition could reflect something as simple as not feeling able to keep up with a conversation.
The reality of perseverative behavior is that it may not stop despite your best efforts. Answering the same question over and over again may lead you to feel that maybe you have dementia. But there are strategies that can help you and the person you care for cope.
Tips for dealing with dementia
The most important thing to remember about dealing with repetitive behavior is that it is important not to escalate it. Don't point out that you just heard the same question. That leads to even more anxiety about their ability to take care of themselves. If possible, redirect the patient's attention to something else. Something as simple as getting some fresh air with them can make a huge difference, especially when the repetitive behavior is triggered by something going on in the home.
Don't share your own anxiety with someone who is anxious and has limited intellectual resources to deal with that anxiety. If you feel that you are about to lose your cool, leave the situation for a moment (assuming it is safe to do so). Keep calm as much as you can. Be kind. And try these tips:
- Focus on the emotion more than the words you hear. Don't just answer the question over and over again, convey that you care and you will be there. When your parent has forgotten who you are, or needs to ask who you are over and over again, tell them. Use a kind and reassuring tone of voice and tell them that you are there to help them. Some of your message just may get through. When the question is about meal time, reassure the patient that there is plenty of food. When the patient keeps asking about a doctor's appointment, reassure them that they have a great doctor. But be careful about outright deceptions. Even people with dementia sometimes have working "lie detectors."
- When you have trouble keeping your cool as you answer the same question over and over again, improvise. If you are caring for someone who can still read, use signs. Instead of answering "When is lunch? When is lunch? When is lunch?" with "At 11 o'clock. At 11 o'clock. At 11 o'clock," write down 11:00 on a piece of paper and show the paper every time you are asked the question. Some caregivers make collections of note cards with answers to questions they hear every day.
- It is not unusual for people with dementia to ask when they are going to see a deceased loved one. Sometimes this is a message to you that they expect to die soon. Sometimes they simply can't remember who is alive and who is not. But another reason for repeated questions about the dead, and for talking about and "to" dead people is anxiety. People with dementia who are anxious about where they will live and who will take care of them often inquire about the caregivers they remember best.
- Look for patterns. Keep notes. See if repetitive behavior occurs at the same time of day or night, or after the same visitors, or after a repeated event. Sometimes the reason for repetition is the patient is cold or hot or tired or hungry or needs to use the toilet.