Imagine a man who gets up repeatedly and walks toward the door of his memory care community. We could call him a wanderer, which is a word that has been used for decades in dementia care. Or we could ask where he is trying to go. Imagine a woman who becomes distressed every afternoon and repeatedly calls out for her husband. We could call her a yeller, or we could wonder what happens for her when the light begins to change, the room gets busier, or she realizes she cannot find the person who has made her feel safe for 50 years. Those may sound like small differences in language, but I don’t think they are. The words we choose do more than describe what we see. They can influence what we look for next.
Words Become Lenses
As a caregiver-turned-board-certified neuropsychologist, I have spent much of my life listening to the language we use around dementia. Dementia sufferer. Wandering. Difficult. Burden. She’s not the same person anymore. Most people who use these words are not trying to be unkind. Many of these terms grew out of medicine and caregiving, and some remain common in clinical and research settings. But language doesn’t simply communicate information. It also gives us a frame through which to interpret another human being. Language can either narrow the lens through which we see someone with dementia or widen it.
A Wanderer or a Person Going Somewhere?
Consider again the man walking toward the exit at 4:30 every afternoon. If we decide that he is a wanderer, dementia itself can become the beginning and end of our explanation. He wanders because he has dementia. But what if he spent 40 years leaving work at 4:30? What if he believes his children are waiting for him? What if the room has become unbearably noisy and walking is his way of getting away from it? He may need the bathroom, be looking for someone familiar, feel restless after sitting most of the day, or simply want to go outside.
Changing our vocabulary doesn’t magically give us the answer but what it can do is preserve a question. Contemporary person-centered approaches to dementia care encourage us to look beyond the neurological disease itself and consider a person’s history, physical needs, emotional state, relationships, and environment when trying to understand behavior. Instead of assuming we already understand what the person is doing, we become curious about why it might make sense to them.
Different and the Same
There is another sentence I have heard countless times from families: “She’s not the same person anymore.” I understand what they mean, and I never want to use person-centered language to minimize what dementia can take from a person or a family. Dementia can profoundly change memory, language, judgment, personality, independence, and relationships. There is real loss in dementia, and the people who love someone with brain change may find themselves adapting to those losses again and again. But not the same person makes a much larger claim. It takes changes in some human capacities and turns them into a conclusion about the whole human being. I have come to prefer a sentence that makes room for both realities: She is different and the same.
Dementia educator and occupational therapist Teepa Snow has helped bring this thinking into the language of everyday dementia care. Through her “Positive Approach to Care,” she uses the language of brain change to focus attention on what is happening in a person’s brain rather than allowing a diagnostic label to define the person. I have come to appreciate this language as brain change puts dementia back onto the spectrum of human experience.
After all, every one of us lives with a changing brain. Our brains change while we sleep and learn. They work differently when we are frightened, grieving, depressed, sleep-deprived, or hypoglycemic. None of these experiences is equivalent to the progressive neurodegeneration, but they remind us of something important: there is no group of people with perfectly stable, unchanging brains standing on one side of a line and a separate group of people with “changed brains” standing on the other.
Even Our Caring Words Matter
We can apply the same scrutiny to the language surrounding the people providing care. Consider the familiar phrase caregiver burden. There is no question that care partners can experience tremendous strain, and changing our vocabulary should never become a way of sanitizing that reality. But the word burden can blur an important distinction between the person and the demands of the situation. A husband may be exhausted without experiencing his wife as a burden.
This is one reason I have adopted the term care partner. For me, it is a small linguistic reminder that even when the balance of a relationship changes dramatically, there are still two human beings inside it. The point is not to become the language police. It is to become more conscious of what our language invites us to see and what it may allow us to stop seeing.
What Changing Brains Can Teach Us
Of course, none of this is only about dementia. Human beings categorize one another constantly. We talk about the difficult employee, the anxious child, the alcoholic, the homeless, the disabled, the elderly. There is a reason our brains do this. Categories are efficient and help an extraordinarily complicated brain organize an impossibly complicated social world. But efficiency comes with a risk: once we believe we know what someone is, we may become less curious about who they are.
Dementia makes the consequences of that shortcut especially visible because cognitive abilities are so central to the way our culture measures independence, competence, and identity. As memory, language, reasoning, or independence change, it becomes remarkably easy for a complex human life to shrink in our language until the diagnosis is the only thing we see.
That is why changing our language about dementia is not about finding nicer words for a difficult disease. It is about trying to see more accurately. Better dementia language should be able to hold both realities at once: dementia can cause profound and painful change, and the person living with those changes remains more than the disease affecting their brain.
