Interpreting puzzling behavior

This is the third post in a series on dementia by memory specialist Heather Dobbert. Catch up on the first two posts: When you see changes and worry about dementia and The value of early dementia diagnosis.

By Heather Costello, MSW, LICSW, CDP 

Alzheimer’s disease and other types of dementia change the way people experience the world around them. If there’s someone in your life who is living with dementia, looking at their environment through their eyes may give you a better sense of how they feel and why they feel that way. That can make a big difference in your ability to respond to how they’re acting.

Most of the actions you see are happening for a reason. If your loved one’s reaction is causing a problem, then identifying that underlying reason may reveal a way to reduce its negative effects and maybe even bring about a more positive situation.

Look from a different angle

One caregiver I worked with, Anna*, struggled to understand why her husband, David*, became agitated every evening, even though he had seemingly adjusted to living in a nursing home. It happened when the nearly floor-length curtain was drawn between his bed and his roommate’s. Convinced that someone was in the room watching him, David refused to lie down to sleep. Everyone else in the room only saw the privacy curtain.

It was their young granddaughter who solved the mystery. She laid down on his bed, rolled to the side and said, “There is a man there. I see his boots.” 

It turned out that the roommate had been leaving a pair of boots just on the other side of the curtain each night. And it did look like someone was standing there. When the boots were removed, bedtime became peaceful again.

This is a great example of the value of looking at the world from your loved one’s perspective whenever possible. Everyday things like reflections, shadows, overheard conversations can trigger concern in someone living with dementia. 

Their world is shrinking, and because of that, they tend to become more egocentric. They may assume comments are about them and fill gaps in a narrative with details related to them. When they no longer recognize themselves, they may think their reflection is a stranger staring at them. Shadows may start to seem independent of the solid objects that create them.

Is there an underlying reason?

While people living with dementia often have some challenges in common, every individual is different. Caregivers, friends and family members have to pay close attention to interpret what is influencing their loved ones. Meet them where they are, rather than where you wish they were or think they should be.

Notice what causes your loved one to act in an unusual, agitated, angry, nervous or unpredictable way. You may hear medical and care professionals describe these things as “triggers.” Consider whether any of these common triggers could be affecting your loved one:

• Pain. This should always be considered first, especially if the person isn’t able to easily communicate that they’re having pain. Here are some non-verbal signs of possible pain:
• Labored breathing
• Squirming or shifting in bed
• Crying, moaning, calling out
• Facial expressions that are tense
• Pulling away from your touch or guarding of body area
• Not consolable, not able to calm down or be distracted
• Discomfort. The cause may be sickness, medication, hunger, thirst, feeling overheated or cold, or something else.
• Being in a loud or busy environment.
• Inability to communicate.
• Frustration with a complicated task or situation that is difficult for them.
• Surroundings that feel unfamiliar, even if they haven’t actually changed. Your loved one may experience reflections, shadows and sounds differently.

If your loved one seems uncooperative or resists your help, it could be out of fear or feeling unsafe. Keep in mind that they still want to feel safe and secure—and to have the things, people and activities around them to make sense.

What are they trying to say?

Like most people, those living with dementia have a desire to express their thoughts and make their own choices. But their ability to tell you what’s on their mind and make competent decisions diminishes as the disease advances.

Figuring out what they mean and want can sometimes be trial and error. You’re not always going to be correct but you can try again. Read Learning to Speak Alzheimer’s, by Joanne Koenig Coste, for more ideas about communicating with someone who is living with dementia. Or check out the Alzheimer’s Association’s resource page on communication.

Dementia can feel like a fog

It’s hard to imagine what it’s like to live with dementia and understand the sometimes puzzling actions of a loved one living with it. Yet we can see parallels in ourselves by thinking about times when we’re not at our best—when we’re highly stressed, exhausted, frustrated, confused or angry. Under those extreme circumstances, we sometimes feel like we are in a fog and are unable to think clearly or weigh the pros and cons of a situation on our own. 

Some people describe dementia similarly. They’re trying to make sense of everything and manage their feelings and reactions through a fog, which means just trying to keep it together is stressful. That’s exhausting, mentally and physically, and is likely to create even more stress.

You may find greater understanding from watching Wendy Mitchell, who was diagnosed with dementia at age 58, in this video about how she navigates the fog of Alzheimer’s and strives to “outmaneuver dementia” whenever and however she can.

You could watch it with your loved one, if they’re able. Wendy’s descriptions may help start a conversation about the topic and offer you some insight into what your loved one is experiencing.

* Names and identifying details have been changed to protect anonymity.