She seems FINE poor dementia labeling

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Transcript

This is a short story from the first dementia care community I ever worked in where I was the dementia care director. So I had a resident named Linda. Linda was a lot of fun. I really enjoyed being around her and spending time with her. And Linda had early-onset Alzheimer’s disease. So she specifically had Alzheimer’s. Alzheimer’s is the most common cause of dementia. There are many, many causes of dementia. She had Alzheimer’s disease and she had early-onset, which means she had it younger than most people do. She was probably in her early seventies, by the time she transitioned into our community. And again, Linda was a lot of fun. I really liked spending time with her. Linda also by, all things considered, looked fine. And this is what this video is really about today. I hear this label being put on people and, I don’t love it.

So one, the person is fine. They’re just living with dementia. So I don’t really like that label in that way, but also there were a number of times that other residents and families were holding the door for Linda so she could leave the community because they were like, she looks fine. She must work here. She must be visiting somebody. All right, bye. Like there were a number of times that I had to really quickly intervene and be like, Hey Linda, let’s go over here and do this because she was ready to walk out the door. And she was very conversational. She was very well put together. And so for people who didn’t know any better, they just labeled her. They were like, boom, she looks fine. She doesn’t have dementia. And there’s this whole concept that like if you have dementia, you’re suddenly going to look a certain way.

Like you’re just going to all of a sudden look like something’s wrong. Right? There are plenty of people living, especially with earlier stages of dementia, who seem fine. And when we apply this label to somebody, it can be really dangerous. And also, I think it’s really stereotyping what dementia looks like. And there’s not one thing that dementia looks like if you’ve met one person with dementia, you’ve met one person with dementia. You’re not a dementia expert. Because you’ve taken care of one person with dementia. So that’s it putting that label on somebody can be really dangerous because of what almost happened. Linda was like out the door a bunch of times, because families were like, oh she, she must work here. Right. There were times when I would get a new resident and my staff would be like, oh, they seem fine. They look fine. And it’s like, well what, what does fine look like? What does fine mean? So many times care partners like family members of people living with dementia would get frustrated because their family members would come from out of town and put the same label on the loved one and be like, I don’t know why you always complain about taking care of mom because she seems fine. I’ve talked to her on the phone for five minutes a week and well, she seems good. Right? So this labeling can be pretty offensive and it can be frustrating for caregivers and it can be kind of dangerous. I encourage you to back away from the labeling of like fine, not fine. And just say, okay, this person’s living with dementia. What are their needs?

Thanks for tuning in. I hope you learned something from this video. If you did be sure to give it a thumbs up, help other people find it and see it and make sure you subscribe to my YouTube channel. Thanks so much. See you next time.

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2 thoughts on “She seems FINE poor dementia labeling”

  1. Rachael, thank you for this insightful posting that will help those of us caring for people with dementia remember that each of us are individuals with various needs. And even beyond the treatment of people with dementia, your wise words offer good advice for how we can better treat all people, especially when they may seem different from ourselves.

  2. LISA VILLASENOR

    Thank you Rachel…I often face that question as an administrator. I believe that we live in the moment with our residents…We join their journey, where ever that might be.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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