For many neurological patients, the words that describe their condition often carry years and years of stigma and misrepresentation.
Take for example, dementia. Can you imagine that the word survived from the late 16th century, from the Latin root demens, meaning “out of one’s mind.” ? It seems hard to comprehend this “legacy”, especially when we consider how language evolves over time.
It’s like we’re still riding around in horse-drawn carriages while simultaneously launching rockets into space, or to use a medical correlation - while simultaneously performing gene editing with CRISPR technology.
Dementia is a broad term used to describe a decline in cognitive functioning severe enough to interfere with daily life and activities. It encompasses symptoms such as memory loss, difficulty with problem-solving, impaired language skills, changes in behavior, and reduced reasoning abilities.
Take for example, dementia. Can you imagine that the word survived from the late 16th century, from the Latin root demens, meaning “out of one’s mind.” ? It seems hard to comprehend this “legacy”, especially when we consider how language evolves over time.
It’s like we’re still riding around in horse-drawn carriages while simultaneously launching rockets into space, or to use a medical correlation - while simultaneously performing gene editing with CRISPR technology.
Dementia is a broad term used to describe a decline in cognitive functioning severe enough to interfere with daily life and activities. It encompasses symptoms such as memory loss, difficulty with problem-solving, impaired language skills, changes in behavior, and reduced reasoning abilities.
Dementia is not a single disease but rather a group of symptoms caused by various underlying conditions, the most common being Alzheimer’s disease (caused by plaques in the brain), followed by vascular dementia (caused most often by stroke) and Lewy body dementia (associated with abnormal protein levels).
As our understanding of neurological conditions evolves, so too should our language and approach.
The word “dementia” carries a heavy burden. It’s a term that has become synonymous with loss - loss of memory, identity, and independence.
To me, being close to someone with vascular damage, I can only say this is far from the truth.
Not to underestimate the tragical effects of this condition, which affect the patient, their caregivers, family and friends. But there’s a lot more going on, or how Emma Heming Willis likes to say: “the remarkable reframe”.
Making a reframe for this condition is helpful both for the patient and the care partner, but also for policy makers, physicians, advocates and the society at large.
Reframing “dementia” means something that science and medicine have left behind, although emotions are technically a part of our anatomic system.
The reframe is about the newly formed social connections, about the kindness and the emotional truth that the person with this conditions speaks of. It’s about adaptation and resilience, rather than solely a progressive decline.
It’s our collective need for companionship that the individualistic society in which we live has forgotten about, and which (ironically) gets us to this very damaging state (that is often accelerated by loneliness, lack of social support etc.)
On a practical note, reframing “dementia” is nothing else but bringing into the 21st century a lexicon that aligns better with the progress we have made in brain health.
The negative connotations often lead to delayed diagnoses and reluctance to seek treatment, as caregivers and patients fear the implications of such a label.
My loved one does not have dementia. - This is what many care partners think, because it’s too frightening to believe otherwise.
So we all need this, for the sake of our loved ones, for the sake of our society’s courage to hope, to advance, to unveil better treatments.
Not to mention that in some communities, especially remote or rural areas, the stigma is even more pronounced due to cultural beliefs about the causes of dementia, traditional views on aging and cognitive decline and more.
Reframing dementia is not just about finding a new word; it’s about changing the narrative surrounding the condition. By shifting our language and perspective, we can encourage earlier diagnosis and treatments and stimulate more robust research and funding initiatives.
Some practical steps forward:
- Encourage the use of person-centered (instead of disease-centered) language: in healthcare settings, media, and the public discourse. For example, say “person living with dementia” instead of “dementia patient”.
- The term “dementia” has been used since antiquity and remains deeply ingrained in medical literature. With the development of more precise diagnostic tools, language must shift to reflect specific biological markers or subtypes of cognitive disorders.
- Move away altogether from “dementia” as a blanket term: push to recognize the heterogeneity of cognitive disorders and use more specific language.
- A few examples: “ Neurocognitive disorder”, “Cognitive variability”, “Brain health challenge”, “Memory and thinking changes”.
- Focus on capabilities: shift from deficit-based language to highlighting remaining abilities and potential for meaningful engagement.
Words have power. Let’s use that power to create positive change.
Whether through petitions, social media campaigns, or grassroots community efforts, each of us has a role to play in changing the narrative. By doing so, we can help ensure that fear and stigma no longer stand in the way of diagnosis, treatment, and support for those living with cognitive challenges.