The Stupid Things We Say to People in Dementialand

In the spring, I asked for my loyal readers to send me some questions in hopes of finally achieving my adolescent dream of being an advice columnist. I received more questions than I expected. From the bottom of the heart, thank you. You guys really are the best.

Sure, I answered some. Yet many of them I didn’t answer—not because they weren’t great questions. In fact, maybe they were too good. I was left shaking my head, thinking “Wow. That sucks. And I have nothing to offer you.”

Several readers emailed me about something that tends to happen when people “come out” with their dementia to family and friends. It’s an issue I’ve thought about a lot. I’ve wanted to offer advice to the individuals with dementia and their caregivers, but I didn’t know what to say. It finally occurred to me that I was focusing on the wrong group. I want to offer advice to everyone else on behalf of people with dementia and their caregivers.

So here are some things to not say to someone when they tell you they have dementia:

“Oh, I’m super forgetful, too.”

“I lost my keys the other day. Maybe I have dementia as well.”

“I’m right there with you. I didn’t remember pick up milk the other day after my husband reminded me three times.”

“I bet I’m just as bad. You wouldn’t believe the stupid stuff I do sometimes.”

To be honest, these types of comments make me pretty angry. My first thought is to be judgmental of those who make such comments, but after a bit of reflection I’ve realized that maybe these people aren’t insensitive jackasses. Maybe they are just uneducated. There’s not much I can do to prevent jackassery, but I can make an attempt to educate.

Dementia is a condition caused by a disease such as Alzheimer’s, frontotemporal dementia, Lewy-Body dementia, or vascular issues. It is a medical condition. It’s unfortunately irreversible and ultimately fatal. It’s a big deal.

Let me put this a different way. Let’s say a friend came to you and said they had stage IV lung cancer. What if you responded with one of the following statements?

“I’ve been coughing so much lately. I bet I have lung cancer, too.”

“I’m right there with ya, buddy. I get winded walking up the stairs.”

“I had trouble catching my breath the other day. I know exactly what you’re going through.”

Those comments are ridiculous, right? Well, that’s exactly what we do to people who have dementia. It would be hilarious if it weren’t so infuriating. Comments about how we are going through something similar (when we aren’t) might be well-meaning, but they minimize the severity of a dementia-causing disease. And they say, “I’m not really listening to what you’re telling me.”

If you are a person who has clinical depression or an anxiety disorder, you might have experienced similar comments. I remember when I was going through my first episode of depression in college. I slept about three hours a night for weeks and unintentionally dropped twenty pounds that I couldn’t spare at the time. I threw up when I tried to eat and lived with a feeling of panic that wrapped around me like a boa constrictor. I thought I was destined to live my entire life in this state (please note: I got better).

I am certain my friends knew something was quite wrong but we had avoided the word depression. After my first visit to the student health center, I decided it was time to let a friend in on what was going on. This wasn’t easy for me. Honestly, if I had realized I was a lesbian in college and had to divulge this to my conservative Republican father, I would have dreaded that conversation far less than “coming out” with my depression to a friend. That’s how difficult this was for me. (And I do understand the irony that I am now writing about having depression in a blog. I’m kinda over that whole stigma deal.)

I explained that the doctor told me I had clinical depression and that he recommended anti-depressants. Her response was, “I’ve been in a bad mood, too. You know I didn’t do well on that test Monday.” Um. She didn’t get it.

To be fair, she was 21 years old. I don’t want everything I said at 21 (or before or after for that matter) scrutinized. In fact, I still say a lot of stupid things that are intended to be helpful but miss the mark. To hold this comment against her almost twenty years later would be purposeless. In fact, my point is that she was doing the best that she could. She was well-meaning. If the roles were reversed, I don’t know if I would have done better.

There’s a rule we need to understand in helping those who have health issues, and unfortunately some of us never really get it. We continue to try to make people feel better by saying we know exactly what they’re going through because we’ve done it ourselves—or even that we’re doing it right now. We try to show comraderie. We try to tell people they’re not alone because our own struggles are similar.

It doesn’t work and we need to stop.

Telling someone who has Alzheimer’s that you sometimes lose your sunglasses isn’t helpful. What you are really telling them is “Alzheimer’s is no big deal. We all go through stuff like that.” And you know what? That’s not true at all. Alzheimer’s is not a normal part of aging. In fact, it’s a terminal disease that has tremendous psychological, social, and financial impacts on families. Oh, sorry about your sunglasses.

I’ve talked with many people who have dementia that struggle with how to tell family and friends about their diagnosis. It’s not an easy conversation to have. And, let’s face it, there’s no perfect response.

However, there are some suggested ways to respond when someone tells you they have a serious illness (whether that serious illness is ALS, cancer, or Alzheimer’s).

Remember that it might have been really difficult for them to tell you this news. It sounds silly, but saying “Thank you for letting me know this” can reinforce their decision to include you. You can say something like, “I’m so glad I know now so that I can there for you.”

Forget that anecdote about your Aunt Bertie who had the same disease (or maybe it wasn’t even exactly the same disease but it was kinda the same) and used castor oil or vitamin E or snail semen or maybe it was prayer to treat all her symptoms. Just zip it. This ain’t your Aunt Bertie, and this isn’t the time. Oh, and that study you read on Facebook about how they cure mice with Alzheimer’s by using green tea extract? Just keep it to yourself. (By the way, sometimes I wish I were a mouse. Doctors seem to be able to cure everything for them.)

It’s okay to say, “I don’t know what to say, but I care about you.”

It’s okay to say, “You are important to me, and I’m here for you.”

It’s okay to say, “I want to help and I’ll need some guidance on how to do that.”

It’s not okay to imply that you have similar cognitive issues to someone who has been diagnosed with Alzheimer’s, frontotemporal dementia, dementia with Lewy-Bodies, or another dementia any more than it’s okay to imply that you have similar breathing issues to someone with lung cancer.

If you are a person with dementia and experience this reaction when you tell others about your diagnosis, you have my permission to handle this situation in whatever way you see fit—but try your best to avoid slapping your friends and family.

20 thoughts on “The Stupid Things We Say to People in Dementialand

  1. And we always learn more after the fact. I’ve learned a lot from your blogs that I wished I had been aware of sooner in my mom’s journey with dementia. So, I am always sharing your site with those going through care giving now. God bless you and your work to educate!!

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  2. I love that you are so direct with people. Thank you for that and for continuing to educate the masses.

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  3. Wow
    I love how you wrote it and it is so powerful a d true. My mum suffers with dementia and I have found people telling me all sorts of different things instead of just saying that they are here for me which some times is the one thing I want.
    Dementia is such a cruel illness and I’m so glad that you write this blog and speak the truth hopefully the more people that read it the more people that can learn.
    Plus your writing is amazing so well written.
    Xx

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  4. Elaine, I think this is one of your best blogs!!! I always appreciate your love and honesty when you write!!! This message is a new twist to the old saying, ” if you can’t say something nice, don’t say anything at all!” Families and caregivers need loving support not advice on how to fix the unfixable!!! Thank you for sharing this!!!

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  5. One of the worst things to say to someone distressed at realising they’ve forgotten their husband or children’s names or can’t find the word for something simple is “It’s OK” which we’ve all said at some point or other but it stings like hell and is never taken kindly because it’s not OK. It’s never OK to realise you can’t remember what your husband’s name is or what that thing is called you put your clothes in to get them clean.

    Easier said than done but important to try and keep in mind all the same.

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  6. I understand someone’s ignorant comment which doesn’t mean I appreciate it. After all many health care professionals haven’t even heard of FTD let alone understand it. I have been known to tell people hubby has a terminal brain disease instead of saying dementia. That people seem to understand and don’t make comparisons.

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  7. Totally agree and have had the same experience with hospital ward staff having no clue whatsoever. Literally stood trying to explain to a doctor that someone’s behaviour was totally out of character and she needed re-admitting and treating appropriately. He’d seen “dementia” and assumed Alzheimer’s so tried telling me it was part and parcel of her condition and that’s what happened. Really patronising too and repeated “Well.. I know it’s a difficult thing but unfortunately this is part of the condition sadly”

    She had vascular dementia and was admitted for routine tests and scans for bowel problems. Not two weeks earlier I was sat playing noughts and crosses with her at 2am when she couldn’t sleep this wasn’t part and parcel of anything nor did she have Alzheimer’s. They see “dementia” somewhere in notes and that’s it – game over.

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  8. It’s nonsense. I’ve fallen out with more hospital nurses, GP’s and paramedics than I care to remember over the years. Appalling how little they know or care either. I got into a habit of sending someone’s full summary of care and background with a staff member to hospital and then they had everything they could possibly need to know right there in front of them. Still had consultants ringing the care home at 2am asking whether Mrs so and so is normally disruptive. :/

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  9. Elaine, this one bears repeating over and over to the population at large. It’s a real disease and people are so uncomfortable with the news. It’s like when a loved ones dies unexpectedly. People sometimes seem to blurt out the most inappropriate responses trying to soothe which sometimes backfire.

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