I believe suffering to be a part of being human. It comes in many forms–physical, emotional, spiritual…and in my heart of hearts, I know we all experience it.
Cancer causes suffering. Divorce causes suffering. Parenthood causes suffering. Death causes suffering, and maybe life itself causes suffering. I mean, if you haven’t suffered, are you even living?
And–you might have seen this one coming–dementia causes suffering.
Yet, I cringe when I see the term “dementia sufferer” or read that someone is “suffering from dementia.”
Let me be clear. Dementia can be a tough beast that presents unique and brutal challenges. I have no doubt that there is suffering as a result of dementia–and this applies to both those living with dementia and care partners.
As someone diagnosed with a dementia recently told me, “Sometimes this dementia thing really sucks.”
She’s allowed to say that. She doesn’t need my permission to say that dementia sucks or that it’s hard or even that she’s suffering. She’s allowed to say that dementia sucks sometimes. In fact, she can say that it sucks all the time. I’m not about to chastise her for her negativity.
She gets to define her own journey.
I don’t get to define her journey. That’s why I am not going to label her a “dementia sufferer” or a “dementia victim.”
It’s not up to me to decide if someone is a sufferer or a victim–which is why it’s so frustrating to me that the blanket term used in the media to describe someone living with dementia is often “dementia sufferer” or “dementia victim.”
Ugh. Just ugh.
Why do we try to write the story for other people–even people we don’t know? The only person who can write the narrative is the person living it. When I meet someone with dementia, all I know is that they are living with dementia. I don’t know their level of suffering. (In fact, I don’t know how much anyone I meet is suffering in that particular moment, and I try to remind myself of this daily.)
Perhaps they are thriving in their life after diagnosis. I don’t think the general public realizes that you can live a good life post-dementia diagnosis, but I have met plenty of people who do. This doesn’t mean they don’t suffer. It doesn’t mean everyday is rainbows and unicorns. It just mean that they perceive themselves to have a positive quality of life overall. You don’t have to be happy every minute of every single day to have a good life, right?
There’s another problem I see with using the term “dementia sufferer.”
It puts dementia first rather than putting the person first. When I say “individual living with dementia,” the person is mentioned before the dementia. I am describing a person–who happens to have dementia. The individual is a human being, and the dementia is the detail.
And…still…I see multiple news stories per day with headlines that mention “Dementia Sufferers” and “Dementia Victims.” A while back, I decided to make a point, and it didn’t go well.
Maybe that’s an understatement.
A news outlet posted a story on Facebook about how “dementia sufferers” had to move out of a nursing home that didn’t meet federal standards. They used “dementia sufferers” in the headline and about 3,489 throughout the story. By the time I had finished reading, I’d had enough. This was a news outlet that should have known better, in my opinion.
Below the news story, I posted a comment suggesting we use the term “persons living with dementia” instead of “dementia sufferers.” I thought it was a nice, well-stated comment that avoided blame but sought to educate.
After three minutes later, someone replied to my comment. They called me the “f**king derp of the week” and said that these people had much bigger problems that the words we used to refer to them. This individual actually told me that my focus on language was (and I hate to even use this cringe-worthy word here) “retarded.” Ironic, right?
I won’t get into use of the “R” word here–but I was PISSED.
I’ve heard that you shouldn’t engage in an argument with an idiot because they’ll drag you to their level and beat you with experience. Well, I did exactly that. Perhaps it was because I was fueled by two glasses of Riesling, but I couldn’t let it go. Other people chimed in–and way too many agreed that my focus on language was ridiculous (although the language they used wasn’t as gentle).
But I think language matters.
If you’ve used the term “dementia sufferers” or “dementia victims” before, it’s okay. I understand that people who refer to those who live with dementia by these terms aren’t being condescending or mean…they just don’t know. And, to be fair, the public uses these terms when the media uses these terms.
But we can do better.
When someone lives with dementia, all we know is that they are a person living with dementia.
It’s not our job to judge their level of suffering or whether they are a victim.
17 thoughts on “Dementia and Suffering (Aka….A Few Thoughts on Language)”
Late on commenting on this one but totally agree. As a journalist I try to be hyper-aware but I see such terms used frequently. “Battled” is another controversial term which I have used in the past but try to stay away from now because saying someone “lost their battle with cancer” (or any disease) makes it sound like it was the person’s fault. Autistic/person with autism is another example, though I know one mother who has a child with autism who said autistic is acceptable.
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Thanks Joy Johnston. If we had more journalists out there like you, we wouldn’t be in the pickle we’re in now!
As a journalist, I appreciate so much the thought you’ve put into this! Thank you!
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The more we talk, blog and write about it, the greater the chances are that things will change.
I was pleased when the Alzheimer Society of Canada published a new set of language guidelines last year:
And we need to get rid of the rest of the stigmatizing labels, ESPECIALLY the term BPSD:
Keep up the good work. I love your posts.
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Well done! I hate all these labels! In my experience it is often the relatives who suffer the most as we find it so difficult to put ourselves in the place of our loved ones.
Spot on as always! I do so look forward to your Monday morning posts.
Thank you for the following through on the thought process. Besides my husband’s dementia we are both long term (30+) HIV survivors. I was also the focus of a brutal crime as a young person in my late teens. I’ve always squirmed about taking on the “Victim” label it’s pernicious and consuming. Whatever has happened it can’t be changed, and at some point the victim label becomes you. It begs the question of “How do you go forward?” with that self defining label tattooed on your forehead. Experiences can be defining/life altering but they aren’t who you are.
Language DOES matter! Thanks for writing, Elaine.
Excellent! Write on! ________________________________
Thank you. My phrase: My husband “has been diagnosed” with dementia as a result of too many blows to the head. Period.
Honestly, he doesn’t suffer from dementia. Dementia in itself doesn’t hurt. The effects of dementia hurt: the loss of his job, his inability to drive at 52, his his medical ailments- non related to dementia, his confusion, and sleep frustrations- either all the time or hardly ever, create frustration. However, he doesn’t really suffer. As long as we keep him with coffee and treats in hand and allow him enough projects to do around the house, my husband forgets the frustrations.
In fact, since the diagnosis and the forced early retirement, our relationship has become sweeter. He depends on us now, so we have his full attention. ❤️
Keep writing Elaine. You are spot on.
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Thanks for sharing this. And I appreciate the point you make about how dementia itself doesn’t hurt–but the effects of dementia may hurt. I’ve never thought about it this way, but you are so right on.
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Thanks, Elaine. I have a similar concern about the popular phrase, “committed suicide”, when “died by suicide” is the more accurate term. Words matter, they have an influence on how we think and perceive situations. Thanks again.
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It’s timely that you bring this up…we are struggling to change the language of “committed suicide” to “died by suicide” on our campus. When students understand the reasoning behind it, they change their terminology–but the word “committed” is so ingrained.
Bloody brilliant as always Elaine,
love Julie, living with dementia xx
I think that “bloody brilliant” is the BEST compliment I’ve ever gotten!
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