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The Why Behind the What: Refusals Based on Fear

One reason why older adults with dementia resist care can be found in the human brain. We evolved with the ability to automatically respond to anything that could be threatening. This automatic response is the “flight, freeze, or fight” response. For example,  let’s say you are driving your car down the interstate and the vehicle in front of you comes to a dead stop. Immediately, your body takes over—you simultaneously slam on the brakes while swerving to avoid the car in front of you. Your heart is furiously pounding and you seem to see everything in slow motion.  Afterwards, it may take several minutes for your heart to slow back down to normal.

What I’ve just described is the automatic fear response.  The fear response is governed by several parts of the brain known collectively as the limbic system or “lizard brain.” The fear response has both autonomic pieces (fast HR, fast breathing, sweating) and behavioral pieces (freeze, flee, or fight).

Using the driving example, when you saw the stopped car, the images traveled frombrain for fear response your eyeball to the thalamus and amygdala (the yellow and pink circles in the drawing). The amygdala decided that this was a dangerous situation and it sent a signal right to your brainstem, which unleashed the automatic responses: the increased heart rate, fast breathing, and sweating. This allowed the rest of your body to respond to the threat by trying to avoid the collision– slamming on the pedals and swerving. You were trying to “flee” from a potential accident.

Now, let’s talk about how your brain can tell the difference between something that is truly a threat and something that is not. Let’s say I am afraid of spiders and one of my friends wants to play a prank on me. I go to my desk and see this big, nasty, scary spider. The same freeze/flee/fight response initially kicks in, but…I realize that the spider is a Halloween decoration! This time, other parts of my brain kick in—particularly the hippocampus (light blue swoosh above) and frontal cortex (blue-purple part), which “tell” the amygdala that the spider is fake and not a threat.  Before the full flight/fight/freeze response can go into full gear, my brain calms down. I can now laugh at the situation and pick up the fake spider and use it to play a prank on someone else. This entire process takes nanoseconds, which means it feels immediate to you and to me.

When people have dementia, certain parts of the brain shrink—especially the hippocampi, which help the amygdala to tell the difference between something that is really a threat and something that is not. This means that persons with dementia are more likely to become fearful and see danger in non-threatening situations. Also, they have difficulty recognizing emotions: they are better able to recognize positive emotions rather than negative emotions, which explains why persons with dementia are less likely to resist care from smiling caregivers than from non-smiling caregivers.

The bottom line is that some of the necessary care we try to provide to our family members with dementia may be accidentally scaring them. The changes in their brains make it difficult for them to tell the difference between a helping action and a harming action.

So, how can you help keep the fear response from causing “NO!s” and refusals? Over the next couple of days, I will be uploading blogs that will have information that you may find helpful.

Categories: Dementia Refusal Behavior

Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

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