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repeated questions can irritate a dementia caregiverRepetitive behaviors such as asking the same question again and again can be stressful and irritating for family caregivers.

Sometimes it feels like your relative with dementia is purposely repeating questions or statements just to annoy you. This is rarely the case. More likely, your relative is trying unsuccessfully to feel a sense of control. Behaviors that surface later in dementia—repeatedly tapping fingers, rubbing arms or thighs, fidgeting with things or pacing back and forth—are also a means of self-comfort.

Responding in a calm, reassuring manner is easier when you understand that physical changes in the brain often lie behind these behaviors. A person may not know that she is repeating herself. He may not know when or how to stop doing something, so he continues spooning his soup bowl when there is no more soup! Your relative may be completely unaware of his repetitive behaviors. You’re the one who may be upset.

What’s behind repetitive behaviors? 

Pain.  Pain can cause people with dementia to rock, pace or move in other rhythmic ways when they are uncomfortable. A person who is hungry may constantly ask, What’s for lunch? A person who feels cold may repeatedly check closets for a blanket or a sweater.

Depression and boredom.  Repetitive actions or gestures may be the only way a person who feels depressed can express herself or cope with certain places, situations or people. Feeling bored or unsure of what to do can prompt someone to repeatedly ask, What do I do now?

Emotions.  Your relative may be expressing an emotion such as fear, anger, or anxiety, and need reassurance. Wringing her hands or tapping fingers on a table may be a way that she is trying to comfort herself. She may be feeling vulnerable, especially in a new or unfamiliar environment with unfamiliar people. Being separated from a loved one can cause constant questions such as, Where’s Tom?

Lack of comprehension.  Asking What are you doing? may indicate that he doesn’t understand what you or someone else is doing.

Environment. Coats, shoes, purses, and umbrellas can prompt questions like Is it time to go now? And too much stimulation—too many people, too much activity or noise—can trigger statements like Let’s go now. Let’s go now.

What can you do?

Consider these approaches to interrupting or redirecting a repetitive behavior.

  • Apply our Behavior Detective approach to observe when behaviors occur and what might be causing them.
  • Respond with your full attention. Sometimes people with dementia no longer know how to get attention and may be using questions as an attention-getting device. Focusing on them and responding to their emotional needs can sometimes break the cycle of repetition for a while.
  • Respond calmly. Frustration or anger in your voice is likely to escalate your relative’s anxiety. If you find it difficult to conceal your frustration, try remaining silent.
  • Try ignoring the behavior or questions. If there is no response or reinforcement, the behavior may stop. However, some people may be very upset when they are ignored and become more agitated. For others, ignoring may eventually work. Be patient while you learn what works and doesn’t work.
  • Try a gentle touch when a verbal response does not help. A hug, holding hands or a gentle shoulder massage can be more reassuring than words.
  • Try giving the person a note with the answer on it. For example, if the person repeatedly asks When is lunch? When is lunch? write out Lunch is at 12 o’clock. Give the person the piece of paper. Sometimes, having the answer to look at can stop or at least diminish the question being asked repeatedly.

You can find many more suggestions and strategies in the Repetitive Behaviors chapter of our book, Coping with Behavior Change in Dementia: A Family Caregiver’s Guide. 

Change your own attitude

Sometimes, despite our best efforts, repetitive questions or movements will not stop. If the behavior is not stressful or a safety threat to the person with dementia, it may help to recognize that this is part of the disease. Changing your attitude to one of acceptance can sometimes help you cope with repetitive behaviors caused by changes in the brain.

Beth Spencer and Laurie White 

Dementia Care Books

 

Behavior in people with dementia is a form of communication. When it’s no longer possible to express feelings through words, behavior speaks for them.

As dementia progresses, your relative may be unable to find the right words to say what she wants to say or ask. She may lose her train of thought or withdraw from conversations and social events because she can’t keep up or comprehend what other people are saying. And multiple conversations, loud noises or activities can be overwhelming. We knew one woman who would hold her head and moan whenever there were too many people in the room. Without using any words to describe the problem, she made her feelings perfectly clear!

The bottom line is: behavior is the language to learn as your relative with dementia loses communication skills. Pacing, wringing hands, moaning, are telling you something. Likewise, angry outbursts, anxiety, or aggression.

Learning to observe behaviors can help you understand what is behind them. When you understand the root cause of a particular behavior, you can try various strategies to address it. We call this the Behavior Detective approach. You can learn more about how to practice it here and here.

What are these behaviors?

Anxiety appears to increase among many people as they grow older. It’s easy to understand why your relative might be feeling anxious. Imagine not being able to hold onto memories or keep track of what’s happening, to have the world gradually become an unfamiliar, confusing and unpredictable place. Anxiety is not the same as anger, but especially when untreated, anxiety can lead to agitation, which in turn may lead to anger and aggression.

Agitation expressed through behaviors such as pacing, wringing one’s hands, crying or making loud repetitive noises, or trying to go home can indicate distress. Physical illness can cause or increase agitation. Many of us are anxious, agitated or irritable when we are sick and this is even more pronounced in people with dementia.  Pain can cause agitation. Sitting too long can cause it! Both anxiety and agitation can be a side effect of medications or changes in medications. Being tired, bored, frustrated, needing to go to the bathroom—all of these can trigger agitation.

Anger and aggression can be caused by the disease or by untreated depression.  People who had tempers earlier in life may have more trouble controlling their tempers now, especially when they feel threatened or are having trouble doing a task. Loss of control is another trigger. We like to be in control of our lives and schedules. Dementia gradually takes that control away. Feeling that one is being treated like a child or that control is being taken away can lead to anger. So can being told no.

Bathing, dressing and going to the toilet can be ground zero for anger and aggression. Frequently the person misunderstands the situation. She may feel threatened by someone trying to remove her clothes or touch her private areas, or feel humiliated that she needs help.  This often leads to feelings of frustration, loss of control and fear….which can lead to anger. Poor care partner communication—using too many words, a condescending tone, or approaching a person out of a person’s range of vision—can lead to angry responses.

Those angry responses are usually directed at the family member or caregiver. What can you do? Work on prevention! After a certain point, the person is probably not able to control his or her behavior. It will be up to you to observe the behavior, try to find a pattern, and then craft a way to respond that lessens or prevents anxiety, agitation, anger, and aggression. Your career as a Behavior Detective is beginning.

Beth Spencer and Laurie White

managing challenging dementia behaviorsIn Part 1 of Becoming a Dementia Behavior Detective, we talked about how observing and logging challenging behaviors can help you discover the reason for distress in a relative with dementia—and then begin to figure out how to make changes that prevent or lessen a challenging behavior.

This is a key concept of our book Coping with Behavior Change in Dementia.  Because people with dementia who cannot clearly articulate their thoughts and feelings use their behavior to communicate, we caregivers need to become detectives. Like detectives, we need to observe, investigate, and draw conclusions from what we are seeing. We watch a challenging behavior over several days, taking notes in a simple record or log, to try to identify a pattern that helps us figure out the cause.

Previously we discussed the story of George and Ann.  Ann often gets agitated in mid-afternoon, frustrating both George and Ann and making them lose their tempers. To help understand what was happening and try to see whether he could devise a solution, George began to take notes on where and when the behavior occurred.

 

When Who was there? Where and what was going on? What was the behavior? What I tried and what happened
Saturday 3:00 I was with Ann Watching TV with me in my office while I read a book. Anger and agitation I yelled at her. She yelled back and threatened to hit me.
Sunday 2:00 I was with Ann We were in my office. I left Ann sitting on the sofa and moved to work at my desk. Ann became upset and started pacing. I ignored her, but Ann became more agitated and started crying.
Monday 4:00 I was with Ann I was taking a nap in our bedroom. Ann became upset and yelled at me because I would not get up. I asked Ann to lie down with me. I stroked her back and she calmed down for a short while.

 

From George’s behavior log, we were able to come up with a number of possible causes for Ann’s behavior and strategies for responding to it. Violent or disturbing TV shows may be one reason. Based on what we know about a typical day for Ann and George, she may be hungry, or not be eating enough protein. Perhaps George needs to limit Ann’s caffeine intake, or give in and give her more sugar!

Other possible strategies to consider:

  • George might try working in his office in the morning when Ann is calmer. If he can focus on his work, he may have more patience for Ann because he is not worried about getting his work done.
  • He could hire a companion for Ann at that time of day. Ann’s behavior is understandably stressful for both of them.
  • He could ask a friend or neighbor to be with Ann.
  • Ann might enjoy attending a day program where she could be with other people and participate in activities.

If all else fails, George should consult a doctor. If the level of agitation continues or increases, and puts both Ann and George at rick, it may be time to talk about a medication to reduce the agitation and anger.

Ask for help

If keeping a log is not feasible for some reason, or if it doesn’t yield clear results, find someone to help you systematically analyze the behavior. A friend, family member or a health care professional may be able to assist with this. Your local Alzheimer’s Association chapter may have someone available who can help.

The more minds the better!  Brainstorming with others can help identify many possible causes and solutions. Some, of course, you will rule out, but your list will lead to a number of strategies to try.

When you sit down together, make a list of possible causes of the behavior. Think broadly. Perhaps it would help to categorize causes. In this story, George could sort the causes into physical, emotional, and environmental causes.

We firmly believe that many of the most challenging behaviors may be minimized when caregivers learn how to identify root causes and try strategies that are known to help some people with dementia much of the time. For us, medication is the last resort. By becoming a Dementia Behavior Detective, you will find strategies that work to prevent or lessen the behavior—and lessen your relative’s distress as well as your own.

Beth Spencer and Laurie White

managing challenging dementia behaviorsAs a Dementia Behavior Detective, you can start to understand and address challenging behaviors with your loved one with dementia.

People with dementia often lose their ability to communicate their feelings using words. Instead they communicate through behavior. What does it mean when someone is pacing, wringing hands or moaning? Finding out is our task!

In our book Coping with Behavior Change in Dementia  we suggest becoming a behavior detective. Like detectives, caregivers need to observe, investigate, and draw conclusions. We watch a challenging behavior over several days, taking notes in a simple record or log, to try to identify a pattern that helps us figure out the cause.

For example, Ann was diagnosed with Alzheimer’s disease 5 years ago. Her husband George has been caring for her alone in their home where they have lived for many years. Ann is self-sufficient in eating and using the bathroom, but needs reminders and assistance to shower. She does not like to change her clothes and has been wearing the same clothes for several weeks.

Ann sleeps about 15 hours a day, going to bed around 7:30 pm and getting out of bed between 10 and 10:30 in the morning. Mornings are the calmest time of day, anchored by their habit of going out for pastry, coffee and juice to a nearby bakery. George and Ann split a sandwich for lunch around 1 pm with ice tea and a cookie. Ann has developed a real sweet tooth. To keep her from eating only cookies, candy and ice cream, George locks the sweets in the pantry.

Lately Ann has become very agitated in mid-afternoon. She walks around their home screaming at George, pounding on the table and walls and going in and out of the kitchen slamming cupboard doors. Ann has hit George several times when he approached her to try to calm her. At this time of day George feels like hiding in his office to read or pay bills and just stay out of Ann’s way so he won’t lose his temper and yell “shut up!”

With encouragement from a fellow caregiver, George began to keep a behavior log to see if it would shed any light on Ann’s behavior.

 

When Who was there? Where and what was going on? What was the behavior? What I tried and what happened
Saturday 3:00 I was with Ann Watching TV with me in my office while I read a book. Anger and agitation I yelled at her. She yelled back and threatened to hit me.
Sunday 2:00 I was with Ann We were in my office. I left Ann sitting on the sofa and moved to work at my desk. Ann became upset and started pacing. I ignored her, but Ann became more agitated and started crying.
Monday 4:00 I was with Ann I was taking a nap in our bedroom. Ann became upset and yelled at me because I would not get up. I asked Ann to lie down with me. I stroked her back and she calmed down for a short while.

 

What could it mean? 

This behavior log gives us some information and some ideas of why Ann might be acting this way. Now it’s time to put on your detective cap. What is Ann’s behavior trying to tell us? What might George do to help Ann?

  • There is a consistent pattern related to time of day. Mid-afternoon is difficult for Ann. We need to think about possible reasons for this.
  • Ann may be feeling alone and insecure. She wants George’s attention. George does not understand that Ann’s behavior is a symptom of how she is feeling. He is finding her behavior so stressful that he reacts by yelling, which only escalates Ann’s anger and agitation. It may help George to know that agitation and anger are caused by the disease, and that Ann is not able to control her behavior. George might try planning an enjoyable activity that Ann can do, such as washing dishes, looking at a photo album, or dusting. Going for a drive or taking a walk before mid-afternoon when Ann’s agitation usually begins may help. It is often easier to prevent a behavior by changing a routine rather than respond to the behavior once it has begun.
  • The TV might have upset her. On one occasion the TV was on. Was she watching something she might have misunderstood or misinterpreted? Could she be confusing TV with reality? News programs that report violence or disturbing events, action or ‘thriller’ shows may be difficult for Ann and causing her distress.
  • Her sugar craving may be increasing her agitation. As the brain changes, people with dementia may crave more sweets. Although by locking up sweets, George is doing what he thinks is best for Ann, giving her an afternoon snack of yogurt, fruit or a cup of cocoa may help reduce her cravings and her agitation.
  • Ann may simply be hungry. She has not eaten much for breakfast or lunch. Starting the day with toast, eggs or cereal or something with less sugar may sustain Ann longer. A larger lunch might help too. George could document whether eating larger meals affects Ann’s level of agitation in the afternoon. Or he could try giving Ann a snack a couple hours after breakfast rather than waiting 3 or more hours.
  • What beverages is Ann drinking? We know she has coffee with breakfast and tea with lunch. George could try decaffeinated coffee or tea or substitute another beverage for tea. Caffeine can make anxiety and agitation worse.

Part two of Becoming a Dementia Detective covers other possible strategies, but our takeaway here is:  A log that helps you track behavior is the first step to understanding the behavior—and then finding ways to change things up that can head off or lessen the behavior. Good luck!

Beth Spencer and Laurie White

 

Refuses to take medicationPeople with memory loss often refuse medications for many different reasons.  A place to start is by trying to figure out why your mom is refusing to take them.

 

 

Possible reasons might include:

  • She doesn’t understand why she needs to take them.
  • She is afraid they might hurt her.
  • Saying ‘no’ is a way to have some control of her life.
  • She has never liked taking medicine.
  • She doesn’t trust the person who is giving them to her.
  • She is having trouble swallowing them.
  • The medications don’t taste good.
  • There are too many medications.

What can you try?

You can see that your approach to this is going to depend, to some extent, on why she is refusing to take them.  Sometimes a simple reminder of what the medicine is for is all that is needed. “Mom, Dr. Jones says this pill is what is keeping your heart beating regularly.  He wants you to take them.”

If it is a control issue, think about ways to give her a little more control: “Would you like your medicine now or after breakfast?” If this is where she is taking a stand, can you make it more casual and less of a power struggle? “Mom, your pills are in the cup on the counter when you are ready for them.” Sometimes putting the medications in a cup near her meal is a good reminder that she needs to take her pills. Keep in mind if she has to take her pills before, after or with food.

If she is afraid or a little bit paranoid, you will need a different approach.  Use the Behavior Detective Approach to pinpoint the times of day when she is most likely to be agreeable and try to give them to her then. You might need to back off and try again later.

Other things to think about:

  • Does she need all the medicine she is taking? Can it be simplified? Are the pills prescribed for multiple times of the day? If so, you might want to talk to the doctor or pharmacist to see whether it’s possible to take them once a day or in a different form. The doctor for one elderly woman with dementia dropped her cholesterol medication, her vitamin and her calcium because she was overwhelmed by the number of pills and refusing to take them. He felt these were the least important in the long run, unlike her blood pressure pills.
  • Ask the pharmacist if the medication comes in a different form. A liquid or patch might be easier than a pill, if available.
  • Can the pill be taken with food or crushed in pudding or ice cream? Sometimes it can be hidden or disguised if it’s something the person really needs but refuses to take.
  • Is this becoming a battleground between you? Is your body language and frustration adding to the problem?

While our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide offers many strategies for addressing challenging behaviors like this, sometimes there is no good solution.  All you can do, as your mother’s caregiver, is your best.

Beth White and Laurie Spencer