When we choose a name for something, that matters. Because when you name it, you label it — and sometimes, it labels you.
That’s certainly the case with the term mild cognitive impairment. I’ve been thinking about it lately, and I’ve been wondering, what if we didn’t call it “mild” cognitive impairment?
I find myself bristling lately at using the term “mild” when I write about this cognitive condition you’re dealing with.
That’s what I want to talk to you about today, and I’d really like your opinion on it.
Hi, I’m Tony Dearing of GoCogno.com, the site for people with MCI, and author of the book, “I Want My Mind Back.”
The reason I bring this up is because I find myself bristling lately at using the term “mild” when I write about this cognitive condition that you are dealing with.
I tend to drop the word “mild” and just talk about cognitive impairment. And there are a lot of reasons for that.
First of all, mild cognitive impairment is not mild. It is not remotely mild. It is a hard, frustrating, maddening thing to deal with.
The word “mild” also sends the wrong message to the world. When you have MCI, you quickly find that people can be incredibly dismissive about what you’re dealing with. They have no idea how difficult this is for you, and they say thoughtless, hurtful things.
Now the term mild cognitive impairment has been around for like 40 or 50 years. It should never have been called that in the first place, but it’s a clinical term and we’re stuck with it .
However, we do get to choose how we talk about it, and I don’t see that the term “mild” adds anything to the conversation. More and more, I find myself avoiding the use of it.
If you’re trying to explain to someone what you have, do you use the term mild cognitive impairment?
Now that’s my opinion, but the only thing that matters is the opinion of the people who actually have it. So how about you? How do you talk about MCI?
If you’re trying to explain to someone what you have, do you use the term mild cognitive impairment? Or do you say something like, “I sometimes have problems with memory,” or “Sometimes I don’t remember things”?
I’d love to hear your thoughts on that. You can leave a comment below, or send an email to me at tonydearing@gocogno.com.
I hope to hear from you, and I hope to see you again next week. Until then, as always, be kind to your mind.
In 2005, I was diagnosed with MCI at age 47. I have often wondered why it is called “mild” cognitive impairment. When I was working 2 jobs, I had MCI symptoms just about every day. Sometimes it would be happening several times a day, but especially the fog. It was anything but mild back then. Since I stopped working in June 2016, the symptoms have become much more manageable. When I was working too many hours, I was barely functioning. The only reason that I know this to be true is because I have been journaling about MCI since 2003. I can go back and read my journal entries from when I was working and life was very difficult for me.
Thanks for the comment, Cheryl. It’s interesting how often I hear from people in their 40s or 50s who have cognitive impairment, and almost always, they say that they are experiencing a high level of stress at work. I don’t have the science to back this up, but I’ve become convinced that work-related stress is one of the single greatest contributors to cognitive problems.
I think that the word “mild” should definitely be dropped.
I think a lot of people are with you on that, Zvi. I’m inclined to use it as little as possible going forward.
Why not just think and say “My cognitive impairment”?
What a clever, insightful thought, Robert. One of the things I tell people is, you are the only person who has your version of MCI. Your suggestion really reinforced that.
Clinical conditions are always divided into “mild”, “moderate” and “severe”. Unfortunately, when the decision makers decided how to name things regarding cognitive impairment related to AD, they left all their training (and their brains and courage) at home. They did not define 3 levels of “cognitive impairment”. They just used a vague, all-encompassing term. Worse than that, they confounded 2 separate things: functionality and disease by idiotically saying a functional, symptom state (MCI) “turns into” a disease (AD). I am convinced that this was done out if cowardice. Fear of telling patients the truth, because they did not have a drug to prescribe. In 2018, Mayo developed a new naming system that corrects this, mostly. You can find it by googling “mayo, stages of alzheimers.” In this progression of labels, they (correctly) focus only on functionality, naming the stages of AD in functional, symptomatic terms and importantantly stating each functional level as “AD caused – X” level of impairment. Unfortunately the majority of doctors still use the collosally old and misleading system, falsely labeling patients MCI with a “future od AD” rather than being real with people and explaining that MCI is a level of symptoms that is caused by things like AD and if your MCI is due to AD pathology, you are already WELL down the road with AD, which has been active in you for more then a decade. Additionally, clinicians fail to truthfully label mild and moderate dementia, choosing instead to stick with MCI until dementia is severe…again likely out of cowardice to be honest with patients and families in lieu of easy drug treatments. Naming has changed in research circles. Mayo has privided a system for tge clinic. Its time every system and every clinician at every level stopped the misleading, confusing and untruthful naming system still used by most.
Well put. You may have heard of the report back in 2015 that concluded less than half of people with Alzheimer’s or their family were even told by the doctor that the patient had Alzheimer’s. Yet when patients are surveyed, they overwhelmingly say they want to know their diagnosis , even if it’s Alzheimer’s..
B R A V O Tony! This label SHOULD be changed! It really downplays the negative aspects of the disease and makes those suffering from it feel like they are losing their minds, because the medical field is either ignorant or dismissive about their symptoms. The public, in general, dismisses it with “we’re ALL having memory problems as we age.” I think of it as having NO short-term memory beyond 2 days. — a real challenge if you are single with no adult children! With everything so computer-oriented, and do-it-yourself online, it is very difficult managing one’s life. When I was still working, it was a nightmare. I strongly believe that this condition should qualify a person for disability.
Thanks for the comment, Nancy. I know a lot of people who have this experience agree with you. I hope that eventually, cognitive impairment will become a condition that qualifies for disability, hopefully sooner than later.