In last week’s blog, I talked about ways to help a person living with dementia maintain their abilities to do activities. In today’s blog, I will talk why people with dementia refuse help, even though we can clearly see they need it!

There are three main, general drivers of care-refusal behavior: Lack of awareness, the “automatic no” and refusals based on fear. In today’s blog, I will explain those three causes.  In next week’s blog, I will talk about what to do when people with dementia refuse help.

“I forgot that I forgot”

There is a term called “anosognosia” (pronounced ah-no-so-NO-see-ya), which means persons living with dementia are completely unaware of their memory problems. This unawareness extends to their need for help. People living with dementia may not know that they are having problems with paying bills or with their driving. Anosognosia is different from denial, and this is why: when I am in denial about something, I choose to ignore a scary problem or to see the scary problem as “not so bad” so that I can temporarily deal with life. Denial is a defense mechanism. When I am finally mentally able to handle the situation, my denial breaks. This is because deep down in my brain, I knew that I was facing a scary problem. I had to mentally “bury” the scary problem until I was able to face it. Believe it or not, denial can be a healthy TEMPORARY coping method. People get in trouble when denial becomes a way of life, but that is not what I’m talking about here.

Anosognosia, on the other hand, happens because I forgot that I forgot. If I am unable to remember that I have a scary problem, then I simply do not have a scary problem. I forgot that I just asked you the same question 5 times. I forgot that I nearly wrecked the car. I forgot that I got lost coming home from the store yesterday. Now, when you tell me that this is the 6^th time I’m asking the same question, I become angry because NO IT IS NOT! I’VE NEVER ASKED YOU THAT QUESTION. THIS IS THE FIRST TIME I ASKED IT!  Or, if you tell me that I got lost yesterday coming home from the store, I’m going to look at you like you are crazy because I don’t remember getting lost yesterday. What the hell are YOU talking about???

Anosognosia is tricky, especially in the mild stage of dementia, because the person living with dementia is completely, 100% not aware that he or she is having problems. Or, if they find something is hard, they may create “reasons” like “I’m just tired” or “I don’t feel like dealing with paying bills today.” You, on the other hand, are looking at the situation and want to step in to help, but you aren’t sure how to do it.

Automatic “NO!”

People with dementia towards the end of the moderate stage often say “NO” to nearly every question or request. This is an incredible challenge for caregivers.

The earliest words uttered by babes are usually “mama” and “no.” Any parent can relate to the “NO” word. “NO” is how we protect children from harm and teach them how to behave. Even if we make the home environment as safe as possible, “NO” remains important as our children get older and go outside into the world. They learn to use “no” to establish boundaries.  “Just say no” and “No means no” are now embedded in our culture. The use of t When the toddler first uses the word “no,” he or she is not refusing anything. They are simply trying out their teeth and tongues, repeating this cool new thing they learned to do.

As adults, we continue to use the word “no.” Sometimes, we use it to protect ourselves from negative choices: “No, I am NOT going to buy yet another gizmo online, eat Twix bars for breakfast, watch Netflix instead of seeing patients, quit my job and become a comedienne, etc.” Sometimes, we struggle to use the NO word to avoid being over-committed or to set boundaries, for fear that we may be disappointing others. The bottom line is that our use of the word “no” starts around the same time we are learning to feed ourselves with our fingers and is used multiple times a day throughout our adulthood and older age. The use of the word “no” eventually becomes a procedural memory. A procedural memory is the memory of how to do something. I talked a lot about procedural memories in last week’s blog.

Dementia and “No”

As people with dementia move backward in time, it makes sense that the use of the word “no” remains. The ability to say “no” will be among the last memories and abilities lost by a person with dementia. Just like my example above, the knowledge of the meaning may go away even though the ability to make the word remains.

Beyond Yes/No Questions

When working with persons with dementia, we immediately learn NOT to ask yes/no questions. Even when we change our approach and say, “Time to take a bath,” or “Here are your medications,” the dreaded NO still happens. Why?

Too Many Words, Not Enough Memory

People with worsening dementia can only “hold onto” a few words at a time. We often use sentences that are too long. Or we try to “explain” why medications are important. Logic and explanations do not work. There is not enough available memory to process this information. When the number of words are greater than the brain capacity, the brain falls back on the procedural memory of “no.”

Dementia damage causes the temporal lobes (which live around the temples) to shrink. These same lobes are often damaged after strokes, which causes some people who have had strokes fail to understand speech. The temporal lobes link sounds to words. As the temporal lobes shrink, people with dementia no longer understand speech. In fact, I have observed that many people with moderate dementia start to act as if they have a hearing problem: “Huh?” “What?” “What did you say?” “I can’t understand.” The hearing works; the ability of the brain to pull the word out of the brain dictionary and link it to the sound is broken.

Our words, then, lose meaning. The result? Automatic “no.”

Refusals Based on Fear

The third cause of refusing care and help tends to happen at the same time people living with dementia need help with everyday activities, like dressing and bathing. This is refusal based on fear. Let me explain. 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 heart rate, fast breathing, sweating) and behavioral pieces (freeze, flee, or fight).

Using the driving example, when you saw the stopped car, the images traveled from your eyeball to the thalamus and then to the amygdala (check out the pic with today’s blog, it shows the pathways!). The amygdala interpreted the stopped car as 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. At the same time, the amygdala sent signals to the motor cortex part of your brain. 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, because Halloween is in a couple of days. This time, other parts of my brain kick in—particularly the hippocampi  which “tell” the amygdala that the spider is fake and not a threat.  Before the full flight/fight/freeze response can go into high 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.

To recap, the amygdala is like a smoke detector. It beeps when there is smoke, regardless of the source of the smoke. I have to look around the house and figure out what is the source of the smoke. I act like the the hippocampi and figure out if the smoke alarm means dinner is ready or if the smoke alarm is letting me know my couch is on fire and I have to grab my animals and get the hell out.

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 telling the difference between neutral facial expressions and negative/angry facial expressions. This is why persons with dementia are less likely to resist care from smiling caregivers than from non-smiling caregivers–they think the non-smiling caregivers are angry!

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.

Next week’s blog: Strategies to prevent and manage refusal behavior.

Categories: Alzheimer's Disease Care Partners Caregiving communication Dementia FTD Lewy Body Dementia Refusal Behavior Understanding Behaviors Vascular Dementia

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.