Dementia and Suffering (Aka….A Few Thoughts on Language)

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.