Rethinking the Language of Dementia: From Stigma to Dignity
by Heather Gately
Words matter. The language we use has the power to heal or harm, to include or isolate, to offer dignity or diminish it. This is particularly true in how we talk about cognitive changes that come with conditions traditionally labeled as dementia. While the medical world may see “dementia” as a clinical diagnosis, many individuals and families hear it as a sentence — a label that implies decline, loss, and despair.
But what if we could change that? What if the language we use could reduce stigma, support dignity, and help people live well even in the face of brain health challenges?
It’s time to reimagine how we speak about dementia — not only to reflect medical accuracy but also to affirm humanity, hope, and worth at every stage of cognitive change.
The Problem with the Word "Dementia"
The term dementia originates from Latin, literally meaning "out of one’s mind." It's no wonder, then, that even in the 21st century, the word evokes fear, shame, and a sense of being “less than.” Despite scientific advances, the public perception of dementia is often rooted in images of hopelessness and inevitable decline.
The implications are profound:
People delay diagnosis out of fear of being labeled or misunderstood.
Families withdraw from community and support due to stigma.
Individuals living with dementia are often treated as if they are invisible or incapable.
Even well-meaning caregivers or clinicians may unintentionally reinforce harmful ideas by referring to someone as “demented” or saying they are “losing their mind.” These expressions reinforce the myth that a diagnosis erases a person’s value or identity — and that simply isn’t true.
Why Language Matters
When we change our words, we can:
Shift public attitudes.
Reduce fear and shame.
Encourage earlier engagement with treatment and support.
Empower people to live with dignity and purpose.
This isn’t just a semantic issue. It’s a matter of human rights, social inclusion, and mental health. The way we talk about cognitive change directly affects how people feel about themselves and how others treat them.
Better Alternatives: Reframing the Narrative
Here are several emerging terms and language models that aim to replace stigma with dignity:
1. Neurocognitive Disorder (NCD)
Already adopted in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), this term is more clinically precise and less emotionally charged. It focuses on the brain’s function rather than personal identity.
✅ Example: “She’s living with a mild neurocognitive disorder due to vascular changes in the brain.”
2. Cognitive Impairment Spectrum
This framing recognizes that cognitive challenges exist along a continuum — from mild memory loss to more complex neurological changes. It offers flexibility and acknowledges that people may function differently depending on time, context, or support.
✅ Example: “He’s on the cognitive impairment spectrum and still enjoys volunteering at the community garden.”
3. Brain Health Condition
By aligning the language of cognitive disorders with terms like “heart condition” or “lung disease,” we medicalize the diagnosis without reducing the person to it. It allows for a respectful, body-focused approach.
✅ Example: “She has a brain health condition that impacts her short-term memory.”
4. Changing Cognition / Cognitive Change
These softer, descriptive phrases support conversation, especially for people in the early stages of diagnosis. They help reframe the focus on adaptation and wellness, not loss.
✅ Example: “He’s noticing some changes in cognition and has started participating in a brain wellness group.”
5. Living with Cognitive Change
Person-centered and affirming, this phrase places the person first and normalizes their experience. It reflects the reality that people continue to live and thrive despite changes in how their brain processes information.
✅ Example: “Our center supports individuals living with cognitive change through therapeutic activities and social connection.”
How Stigma Impacts Identity
Stigma doesn’t just hurt feelings — it erodes identity. People internalize the message that they are “less than,” “burdensome,” or “broken.” This can lead to:
Social withdrawal
Depression and anxiety
Reduced self-worth
Decline in functional ability due to lack of engagement
When a person is defined solely by their diagnosis, it overshadows their history, passions, personality, and capabilities. As a society, we must reject the idea that a diagnosis erases a person’s worth.
What Person-Centered Language Looks Like
DO say:
“A person living with cognitive change”
“Experiencing memory challenges”
“Navigating a neurocognitive condition”
“He still enjoys…”
“She participates in…”
AVOID saying:
“Suffering from dementia”
“She’s gone” or “She’s not there anymore”
“Demented patient”
“Losing his mind”
Language can lift people up or push them down. Let’s choose our words with care.
We all need to consciously adopt language that:
Emphasizes what individuals can do
Recognizes the whole person, not just their diagnosis
Encourages community participation
Offers hope and resilience through brain wellness programs
Back up our words with belief in action:
“You are not your diagnosis. You are still you — and you are deeply valued.”
I have see directly the benefits of Cognitive Stimulation Therapy groups, brain health workshops, cognitive rehabilitation and caregiver support programs for all involved in order to create a culture of dignity, empowerment, and respect.
Moving Forward: What You Can Do
If you’re a caregiver, healthcare professional, family member, or community leader, you can be part of the change. Here’s how:
Use person-first language in every conversation.
Challenge stigma when you hear demeaning or outdated terms.
Model inclusive behavior that affirms identity and individuality.
Educate your networks on the importance of compassionate, accurate language.
Share uplifting stories of people living well with cognitive change.
Final Thoughts
We are not powerless in the face of cognitive decline. The most powerful tool we have is connection — and that starts with the words we choose. By shifting from language of despair to one of dignity, we honor the lives, contributions, and value of every person living with cognitive change.
Let us lead with compassion, speak with clarity, and walk together in community. Because no one is “lost.” They are still here — still loving, still giving, still living.
And they deserve to be seen, heard, and respected.
Let’s replace stigma with understanding, silence with dialogue, and isolation with belonging.
💬 "You are not your diagnosis. You are still YOU — with voice, value, and vision."