Language Matters

Imagine for a moment that you are walking a tree-lined beach path.  The wind whirls, and the Banyans creak their response all around you. Your rubber sandals scrape the sand and the waves sound the way they do when you press your ear against a conch shell.

The air itself seems to shimmer, twirling the canopy leaves the way you might carefully turn an ocean-slicked lettered olive shell in your palm. You admire the sunlight dancing overhead, and you inhale the salty afternoon air. 

If you speak Japanese, you can categorize this precise pleasure. 

“Komorebi,” you say, knowing that you are describing what Google Translate calls “sunlight filtering through the foliage.” 

While you don’t need this specific word to enjoy the moment you just envisioned, you may find that, now that you know it, your golden hour walks include deeper appreciation for sun-soaked leaves. 

That’s because language matters. Linguistic relativity, or the Sapir-Whorf hypothesis, posits that a person’s mother tongue directly shapes our human experience in profound ways. 

The words we use characterize our world and everything it encompasses — the people we most love, the people we no longer love, our actions, our needs, our desires, our emotional landscape. 

“Just as with other aspects of thought and perception, the vocabulary and grammatical structure we have for thinking about or talking about what we feel doesn’t create our feelings, but it does shape how we understand them and, to an extent, how we experience them,” says Rachel Green, a mental health writer, in a Verywell Mind article. 

When it comes to Alzheimer’s and other diseases that cause cognitive impairment, this concept can positively transform your experience. 

Yes, it is true that language loss is on the horizon when we navigate dementia’s murky waters, but that doesn’t mean that we should be indifferent when speaking to and about the person who is confronting brain changes . 

Think about the difference between the following phrases: “person living with Alzheimer’s disease” and “patient suffering from…” or “patient afflicted with…” 

Which one centers the human and his or her dignity, independence, and ability to experience life and joy? 

“It sends a strong message to our world,” says Alzheimer’s & Dementia Resource Center Executive Director Edith Gendron. “This is a person — someone to be included in our daily lives, our interactions, our thoughts, and our plans — rather than an afflicted being to be put in a safe corner and forgotten. We ‘work with’ them. As we do, we ask their opinions and we take their view into account. We seek to understand, instead of claiming to ‘know what is best.’”

This means we approach our family member, spouse, or friend with inquisitiveness and adventure. 

We begin to ask: Who is this new person? 

“We have to find a way to have our language reflect the curiosity and the joy in this person’s new being,” Gendron says. “As this person evolves into someone new, someone we don’t know, someone we have to learn about, we ask, ‘Who will that new person be now?’ And that sets us up to ask, ‘Who will I be when my person is gone?’”

When we reframe our experience this way, we mitigate the distress we feel as Care Partners. 

Even the term “Care Partner” is an example of how we employ language to empower ourselves and our people, and create better outcomes. 

“Moving away from the term ‘caregiver,’ even though that word is not incorrect by any means, toward a realization that this is a partnership, is essential,” Gendron says. “This dyad of Care Partner and the person living with Alzheimer’s Disease or other form of dementia is a team.” 

Both players bring unique skills, knowledge and abilities. This partnership continues, even when the voyage is approaching its close. Even when one team member can no longer articulate her experience using words, she can still communicate because she and her teammate remain connected. 

“They continue to have great meaning for one another,” Gendron says. “Just because one person in that dyad may not be able to verbalize the meaning, does not indicate that the meaning is not there. We do not know the extent of the ability of the person living with Alzheimer’s Disease to process the world in which they live. Communication is not limited to verbal expression. The person’s body tension, facial expression, non-word vocalizations are all forms of communication and indicate the team is intact. Team is not defined solely by task completion.” 

And it’s important, too, to watch how we describe the behaviors we observe, which are natural responses to the environment. When we call them “problematic or problem behaviors,” we are creating more stigma, even though that is likely not our intention. 

We each respond to our internal and external environments all the time, and those responses may be neutral, happy, pleased, or distressed. The same is true when we consider the person who is navigating dementia. 

When we replace the word “problem” with “distressed,” we are more accurately describing what is happening, and we are centering a solution-oriented approach. 

“A sudden noise, an unexpected touch, a startle of any kind are just a few ways that a person can respond with distress,” Gendron says. “The distress is not the problem. The aspect of the environment that prompted the response is the problem that needs to be identified and mitigated.”

When you work with ADRC team members, you’ll notice that the language used reflects a deep respect for the person living with brain changes and his or her Care Partner. When you adopt that language, too, you are helping us create a more accurately-described world that supports dignity and independence for each of us, for all of us.

The next time you and your person go for a walk, maybe you stop and savor the komorebi, taking a moment to appreciate the unique vocabulary you have for this once-in-a-lifetime experience.