Posts

During the COVID pandemic, recognizing a friend, co-worker, or neighbor wearing a mask has been challenging.  While a person’s eyes give us some clues to the person’s identity, it often isn’t enough. We don’t have the benefit of seeing a person’s mouth and facial expressions. And masks often muffle our voices, making it harder to hear and understand.

This is especially true for people with dementia. Laurie has a friend, James, whom she met shortly after his diagnosis five years ago. They would talk, laugh and converse weekly about many things including his diagnosis. During the pandemic, Laurie didn’t see James for the better part of a year. She kept in touch with his wife, who said that while James’ dementia had progressed, he was pretty much his same old self.

When finally Laurie visited James, she wore a mask, as requested. She was excited and nervous to see James, as she wasn’t sure he would recognize her. He didn’t. When his wife said, “James, you remember Laurie, right?” James looked at Laurie quickly, shaking his head no.  When she took off her mask and said his name, he recognized her immediately, gave her a hug and they talked for a short time.

This experience reminded us of the importance of giving a person with dementia every chance we can to recognize and interact with us. This becomes harder in the later stages of dementia, but we believe that we never know when a person might recognize us. Keeping these points in mind may help you and your relative or those who work with your relative.

  • Whenever it is safe and allowed, remove masks, so that you can see each other’s entire face.
  • When you approach someone with dementia, move and talk slowly. People with dementia need more time to process who you are and what you are saying and doing.
  • Start by saying the person’s name and then introduce yourself. “James”. PAUSE. “It is Laurie.” PAUSE. “I am so happy to see you.”
  • Keep the conversation short.  Use simple phrases, especially if your relative or friend is in the later stages.
  • Maintain eye contact as much as possible. This often makes the person more comfortable. Try to be at their eye level, rather than above or below. In some cultures, it is rude to maintain eye contact.  If this is true in your culture, be sure you educate those who interact with your relative about this.
  • Recognize signs that your relative is becoming tired or agitated: wringing hands, facial grimaces, restlessness. If this happens, you might try involving your relative in another activity such as walking in the garden, having a snack, or just sitting together quietly.

As people with dementia become non-verbal, it doesn’t mean they can’t understand what you are saying. Some people with dementia will understand what others are saying long after they have lost the ability to speak. You can find many pointers for talking with your relative with dementia in our book Coping with Behavior Change in Dementia: A Family Caregiver’s Guide, which equips you to address communication challenges throughout the stages of dementia.

Laurie White and Beth Spencer, 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