People with dementia say “NO” to nearly every question or request. This is an incredible challenge for caregivers. In this blog, I explain one reason for the non-stop no’s…and offer strategies for preventing and managing the negativity.
Patterns of Memory Loss and Retrieval Problems
All dementias share this same common feature: moving backwards in time. The newer memories go away first, followed by older memories. Persons with dementia “unlearn” tasks and abilities in reverse order. The tasks learned earliest in childhood, such as feeding oneself and removing clothing, are the last to be lost.
Some memories are buried deep in the brain. Retrieval, or the ability to get memories and bring them to the surface, gets worse. Singing and music, by the way, are retrieval paths. If the front door of the house is locked, always try the back door…it may be unlocked. Or try a side window. Music uses different paths to get to buried memories, which is why someone who no longer talks suddenly sings along with a favorite hymn.
“Mama” and “NO!”
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.
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. When my youngest was learning to talk, and “no” was one of his earliest words, his older sister loved to tease him by asking him questions–knowing his response:
Older sister: “Want some ice cream?”
Little brother (smiling and reaching for the spoon): “NO!”
Older sister: “Sorry, little guy, you said ‘no.’” (Older sister puts spoon of ice cream in her mouth.)
Little brother starts to cry and wail.
Mom: “DO NOT MAKE ME COME OVER THERE! STOP TEASING YOUR BROTHER!!” (and various other things that I probably should not have said but other parents will understand).
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 (make that purchase, eat that food, tell my supervisor that this newest idea is really stupid, 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. Procedural memories, which include feeding oneself and brushing one’s teeth, will remain even after we lose other memories, like why or when we should do something.
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. We change our tactics 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.”
Shrinking Temporal Lobes Cause Receptive Aphasia
The temporal lobes (under the ears) shrink in Alzheimer’s dementia and frontotemporal dementia. These same lobes are often damaged after strokes, which causes the receptive aphasia we see with post-stroke patients. 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.”
Strategies to Minimize “No”
There are ways you can interact with someone who has dementia to minimize “No.”
Start with Your Appearance
During a recent home visit, one of my nieces took my picture without my knowledge. I was listening intently to something my sister was telling me. The picture surprised me. I looked so serious and somewhat…mean. I was frowning and wrinkling up my forehead. I had no idea I looked like that. This made me think: when I’m working with people with dementia, do I look like this when I’m focused?
Gently smile. Relax your forehead. These two small steps will soften your features and make you appear more relaxed and friendly. People with dementia, especially in the moderate to severe stages, rely more on nonverbal cues than spoken language.
Support what you want to say with gestures. I will make a “come with me” gesture with my hands. I also NEVER hold or pull someone with dementia. The result is a tug-of-war, and you will lose. Instead, I gently place their hands on my wrists and I walk backwards or side-by-side. Try it. Also, nod your head and smile when you are getting the response you want.
Make it Vague
Instead of saying, “Let’s go brush your teeth,” try “Let’s go have fun.” Don’t judge, I know it sounds super weird (and creepy). For reasons I have not yet figured out, I have gotten people to the bathroom with the fun sentence.
Putting It All Together
At first, some of these ideas will feel weird. Play with the techniques, and see what works best for you and your family member. I have some patients with whom I barely speak because the spoken words trigger unwelcome or difficult (for me) behaviors. I have other patients with whom I sing the entire time I’m providing care. It is somewhat trial and error, but the results are worth the experimentation!
This post originally appeared in the Alzheimer’s Reading Room on July 13, 2018: https://www.alzheimersreadingroom.com/2018/07/dementia-care-why-people-with-dementia-say-no-and-what-to-do-about-it.html
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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.