Dementia and Diversity—What Should We Call People with Dementia?

Recently I found myself talking to the daughter of a nursing home resident. We were discussing why nursing home staff should avoid calling residents “sweetie,” “honey,” “dear,” and similar terms. I’ve read quite a few articles arguing that such language can be demeaning when used toward older adults. I mean, you wouldn’t call your boss sweetie, right?

The daughter agreed with me.

Then her mother, who was sitting nearby, piped up.

“I like it when they call me honey. It makes me feel loved,” she said.

And I was reminded of something.

I don’t speak for all people living with dementia. In fact, I don’t speak for any of them. I speak based on my own background and knowledge. My views are shaped by my perspective on the world and my personal experiences. Sure, I listen to people living with dementia and do my best to process their experiences and feelings. But even if I were to be 100% accurate in my perceptions of where someone is at, that’s one person with dementia.

If you’ve met one person with dementia, you’ve met one person with dementia.

I stand in front of groups and talk about what you should and shouldn’t do when you interact with someone who has dementia. But is every person going to agree with my recommendations? Nope.

I recently watched a video of a man with cerebral palsy. He was talking about what annoyed him…being patted on the head, people pushing his wheelchair without asking…but then he said something interesting. He reminded everyone that he’s just one person with cerebral palsy. He doesn’t speak for everyone with cerebral palsy. Something that might be frustrating to him might be welcomed by another person.

An African-American colleague and I were chatting a couple months ago about bias, discrimination, and micro-aggressions. He mentioned that he might perceive a comment made to him as biased, whereas another African-American individual could hear that same comment and think nothing of it. There’s not an official list of what offends every African-American because African-Americans are individuals and do not share a collective brain.

My friend, Drew, has cystic fibrosis. My education would tell me to refer to her as a person living with CF. We call that “person-first” language. She’s a person before anything else. However, she refers to herself as a CFer. And who I am to explain why that’s incorrect? She gets to call herself whatever she wants.

I live in a university culture. I am constantly made aware of preferred language and current trends in political correctness. I follow the tips I’m given. I call students what they prefer to be called. (This was a particular point of emphasis when our university realized we had an increasing number of transgender students. A student whose legal name was Michael preferred to be called Lucinda. And I have no issue with that.)

It’s in my nature to prefer things to be black and white, so I like to be given rules. Either I’m right or I’m wrong. And I can point to a piece of paper to show someone that they’re wrong. But I’m not sure it’s so simple here.

Recently I wrote about why we shouldn’t refer to people living with dementia as dementia sufferers. Sure enough, I heard from a few people with dementia who preferred to be called dementia sufferers. They felt like saying they were living with dementia rather than suffering from it painted too rosy of a picture. They wanted the world to know how challenging dementia was—and they felt like using the term dementia sufferers was the best choice to really represent dementia.

And that’s their experience. I can’t argue with their experiences.

We make recommendations of what to call individuals and how to interact with them, but we do this at the group level. And people living with dementia are just as diverse as people living without dementia. They have different preferences. They have different likes. They have different needs.

This isn’t about me. It’s about them. So I need to adjust.

I was talking to a woman in early-stage dementia about this a while back. I asked her if she considered herself to be a dementia sufferer or a dementia patient or a person with dementia or a person living with dementia….

She laughed and said, “I don’t know. You can just call me Clara.”

I wasn’t sure what to make of this–because her name was Sue. I wondered if she’d had a cognitive lapse.

“I’ve always wished I were named Clara,” she said.

From then on, I called her Clara.

 

 

9 thoughts on “Dementia and Diversity—What Should We Call People with Dementia?

  1. I liked your story about Clara. I do not have dementia (well, that I know of). But people who did not know me started calling me “sweetie” and “honey” etc. as I aged. Ageism, in its purest form. I tell them that they can call me “Doctor” (I have a doctorate).

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  2. The fact that there is no ‘one size fits all’ when caring for someone with dementia, leaves me feeling more than a bit lost. I’m very grateful that you’re here to guide the way.

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  3. I never discuss dementia nor Alzheimer’s in the memory unit. The only exception is one lady (of the Sweet 17) asks every time I see her (hundred’s of times) “Why am I here?”. We were told that it is ok with her to tell her that all is ok but she has trouble remembering and they are there to help her.
    With a tremendous amount of respect, I say this carefully: Most of the women in my mom’s memory unit are incapable of discerning gender, race, or most other traits. I am not sure worrying about micro-aggression is a thing when everything on the vast majority of patients operate on the epitome of a macro-level. They, in general, have no filter. On stuff they do discern, yhey blurt out statement: about colorful hair, tattoos, piercings, etc… I am not sure that correcting them even in that serves a purpose other than, perhaps, helping the other party know that you care about their feelings too. I am not certain how much most of the ladies where my mom lives can “learn” from correction at this point.
    I make a lot of generalizations in my Digital Cornbread blog, mainly because there is very little good information in the “What to Expect” realm…mostly How-tos and venting and general noise. No disease or condition can be generalized down to its core, but being over-sensitive to generalizations can also exclude valuable information.
    Just some thoughts from an amateur. 😉 Keep up the good work. 🙂

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  4. I love these emails. How do I share it on facebook! They are just often enough to not be annoying and I learn something and laugh at every one!Linda MarascoSent from my cell

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