Why vibes really matter to people with dementia 🍏

Hello friends,

I don’t have anything useful to say about potentially being on the verge of WW3 (I hope this is hyperbole), except to offer this cute Boston Terrier video a friend sent last night as her way of coping with the times.

Ok.

Last episode was all about how to deal with the hard feelings that can come up as a dementia caregiver, so you can ultimately give better care.

For our latest bonus episode for paying subscribers on Patreon, we bring you an in-depth conversation with Claudia Drossel, an Eastern Michigan University psychology professor, about the feelings of people with dementia—feelings that she says are widely misunderstood.

Oftentimes, when a person with Alzheimer’s gets upset about something that isn’t factually true—say, that there are burglars trying to get in through the backdoor—it can be frustrating for caregivers because you can’t calm them down using reason.

But, Claudia says, their distress is always driven by an underlying emotional need—and it’s your job as the caregiver to figure it out.

It was an eye-opening conversation. It felt to me like Claudia was an “emotional detective” teaching me how to puzzle through these personal mysteries and make sense of clues that otherwise get ignored.

Though we talk specifically about interacting with people with dementia, I think it’s good advice for interacting with anyone as a human.

And if you’re not a paying Patreon member yet, you can subscribe here starting at $5/month. You’ll get access to our library of bonus interviews (11 and counting!), ad-free episodes, and a Zoom call with moi.

Listen to the bonus

“Most people think of memory loss when dementia is mentioned,” Claudia said. “But I just wanna say, it's not the memory loss that is really the biggest problem, but sensory and perceptual changes, where you and I might lose our sense of smell. We might perceive hearing very differently. We might perceive language differently. We might see the world differently.”

For example, she said, someone with dementia might perceive texture differently and see steps where there are none, putting them at a high fall risk. Or language might sound much more like noise to them than language. That’s why “there is a really valuable lesson in slowing down” and being deliberate in your interactions with people with dementia.

Claudia talked about a “mood induction” experiment done with people with Alzheimer’s disease. “They took [them] either to a movie that was a comedy and a very happy movie or to a sad one, and then later on asked them what their mood was. They could not recall having seen the movie, but the mood matched what the movie had been about.”

So, she says, if you’re a caregiver and you’re rushing your loved one out the door and you’re impatient and stressed, you might think, “Oh, no big deal, Mom will forget about this later.” That’s not exactly true.

“Sometimes we see very abrupt behavior changes and it turns out it's physical decline,” Claudia said. “It's an infectious disease. It's pain that the person is not being able to verbalize. So they … might kick somebody when they're being approached and people are trying to do their personal care. And it might be that they're just self-protective because they're hurting so much and we have not realized that they have a urinary tract infection or something else is wrong with them.”

Comparisons like that erase their history, she says. “They carry their history even when they might not be able to talk about it anymore. I think that is so fascinating that people live their histories and what matters to them even when they cannot speak about it anymore. And that's why I really do not like any kind of comparison of people with neurocognitive disorder to children. … It's absolutely not the same.”

• Maybe improv could help you be in the moment with loved ones who have Alzheimer’s.

• Or maybe a bus stop.

• Or maybe a podcast all about caregiving for your parents. Proxy listener and filmmaker Sian-Pierre Regis just launched a Kickstarter campaign to chronicle “the moment you’re called to parent your parent through the lens of 2 gay men and a mom. My mom moved in with me and my man for three years and I was recording throughout for the highs, lows, fights, frustrations, care, etc.” I, for one, would like to listen to this.

Your emotional investigative journalist,

Yowei

Edited by Juliana Feliciano Reyes.