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Pat’s dad can’t remember from moment to moment that he has a brain disease affecting his ability to live alone.

Sara can get herself out of bed—but doesn’t know what to do next. She needs someone to prompt her through every step and help her get them in the right order.

These are frustrating situations for people with dementia and their care partners. Understanding more about brain changes caused by dementia can help us respond with compassion and patience.

Dementia changes the brain, and those brain changes also affect a person’s thinking and ability to function. The type of dementia will affect how and when these changes occur. Many affect what we call “executive function”—the cognitive areas that let us get through our days, perform routine tasks, make decisions and solve familiar problems. When these functions are impaired, the result may be inability to think clearly, do routine tasks, and make good decisions.

Most troubling can be anosognosia, or lack of awareness in the presence of a neurological illness. Pat’s dad can’t remember that he has a brain disease. He doesn’t see any problem with living alone and resists the idea of moving in with Pat.  It’s hard on Pat, too. She remembers a father with good insight into his life and situation.

“A person can abstractly understand that they have an illness, but not be aware of how it is affecting them,” says Mariana Longoria Ibarrola MD,  a brain health expert who contributed a chapter to our book, Moving a Relative and Other Transitions in Dementia Care. “Loss of insight into one’s own deficits is often baffling to caregivers who are used to having honest conversations with their loved ones.”

Lack of insight may lead to denial, inflexibility, or irresponsibility. Care partners frustrated by a person’s lack of insight might confront or blame.  All of these can lead to conflict. (Find ways to handle anger, aggression and conflict here.)

Understanding the “why” of these behaviors helps us respond in caring and appropriate ways. Knowing what is happening in the brain can help us use the powerful tools of empathy and forgiveness—and remember not to take things personally.  Then Pat can approach her father and decisions that need to be made from a different perspective.  Sara’s family can learn how to coach her instead of blaming her for being “lazy” or “resistant.”

Remembering that the disease is talking helps us stay calm, warm, and supportive. George and Harriet called his disease Mr. AD.  When things became challenging, one or the other would often say “That’s Mr. AD interfering again.”

Changes in the brain are behind all of the changes and stages of dementia. We love the way George and Harriet let “Mr. AD” take the blame instead of each other. Our books Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care offer many more ways to cope with “Mr. AD”.

Beth Spencer and Laurie White

Dementia Care Books

 

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