Decoding the Feelings of People with Alzheimer's [TEASER]

Summary

Proxy with Yowei Shaw: Decoding the Feelings of People with Alzheimer's [TEASER]

Release Date: June 24, 2025
Host: Yowei Shaw
Producer: Y3 Productions

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In this teaser episode of Proxy with Yowei Shaw, the conversation centers on the intricate emotional dynamics involved in caring for individuals with Alzheimer's disease. Hosted by Yowei Shaw, the episode features an insightful dialogue with Claudia Drossel, a psychology professor at Eastern Michigan University. Claudia specializes in working with both individuals experiencing dementia and their caregivers, aiming to foster more compassionate and effective caregiving relationships.

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1. The Growing Challenge of Neurodegenerative Diseases

Yowei Shaw opens the discussion by highlighting alarming statistics:

"Researchers estimate that 42% of Americans will eventually develop a neurodegenerative disease." (00:02)
This staggering figure underscores the increasing prevalence of conditions like Alzheimer's and the ensuing strain on caregivers—often family members untrained and thrust into demanding roles. Shaw references a previous episode where the challenges faced by caregivers were explored, setting the stage for a deeper dive into the emotional experiences of those with cognitive decline.

2. Understanding the Emotional Landscape of Alzheimer's

Transitioning into the core topic, Shaw emphasizes that individuals with Alzheimer's have profound emotional experiences that are frequently misinterpreted or overlooked. She recounts her conversation with Claudia Drossel, who elucidates the complexities of these emotional states.

"Feelings that Claudia says are often misunderstood. Like when someone with Alzheimer's gets upset about something that's not true… underneath their distress is an underlying emotional need." (00:17)
Claudia explains that what may appear as irrational fears or irritations are, in reality, manifestations of deeper emotional needs. Recognizing and addressing these needs is crucial for caregivers to provide meaningful support.

3. The Importance of Slowing Down

One of the pivotal insights shared by Claudia revolves around the necessity for caregivers to slow down their interactions with those suffering from neurocognitive disorders.

"Being with somebody who has a neurocognitive disorder often means being with somebody who doesn't comprehend language in the same way that you and I do..." (03:00)
Claudia highlights that perceptual changes significantly impact communication. Slowing down ensures that interactions are deliberate and tailored to the altered ways individuals with Alzheimer's perceive the world, thus fostering better understanding and reducing frustration on both sides.

4. Emotional Persistence and Mood Induction

A fascinating aspect discussed is the persistence of emotions in individuals with Alzheimer's, even when they no longer recall specific events tied to those emotions.

"People did mood induction... they could not recall having seen the movie, but the mood matched what the movie had been about." (05:12)
This phenomenon illustrates that while memory may falter, emotional responses remain intact and can be influenced by external stimuli, further complicating interactions and emotional regulation for both patients and caregivers.

5. Sensory and Perceptual Changes Over Memory Loss

Claudia shifts the focus to emphasize that sensory and perceptual alterations are more debilitating than memory loss itself for individuals with Alzheimer's.

"It's not the memory loss that is really the biggest problem, but sensory and perceptual kind of changes." (07:31)
These changes affect how individuals perceive their environment, leading to challenges like misinterpreting textures underfoot or experiencing altered senses of smell and hearing. Such distortions not only increase risks, such as falling, but also make it difficult for caregivers to implement effective strategies like using visual or auditory cues.

6. The Emotional Toll on Caregivers

The discussion delves into the emotional burdens that caregivers carry, including feelings of frustration, exhaustion, anger, and eventual burnout.

"There's such a demand. And this is how we come to rules that kind of are ineffective in the culture." (10:15)
Claudia points out that caregivers often compare themselves to others in similar roles, leading to futile and harmful self-assessments. Each caregiving situation is unique, influenced by personal histories, the nature of the relationship, and the specific challenges posed by the individual's condition.

7. Navigating Complex Caregiving Relationships

The relationship between the caregiver and the individual with Alzheimer's is frequently fraught with complexity, especially when historical dynamics like trauma or previous relational strains come into play.

"I've seen folks who are divorced where the ex-spouse then starts caring for the person that they used to be partnered with..." (11:10)
These intricate dynamics make caregiving not just a logistical challenge but an emotional labyrinth, requiring caregivers to navigate their own feelings alongside those of the person they are caring for.

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Conclusion

This teaser episode of Proxy offers a profound exploration into the emotional intricacies of Alzheimer's care. Through Claudia Drossel's expertise, listeners gain a deeper understanding of the emotional persistence in individuals with dementia, the critical importance of perceptual considerations in caregiving, and the multifaceted emotional challenges faced by caregivers. The conversation underscores the need for empathy, patience, and tailored strategies to foster healthier, more compassionate caregiving environments.

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Notable Quotes:

• "Feelings that Claudia says are often misunderstood. Like when someone with Alzheimer's gets upset about something that's not true… underneath their distress is an underlying emotional need." — Yowei Shaw (00:17)

• "Being with somebody who has a neurocognitive disorder often means being with somebody who doesn't comprehend language in the same way that you and I do..." — Claudia Drossel (03:00)

• "It's not the memory loss that is really the biggest problem, but sensory and perceptual kind of changes." — Claudia Drossel (07:31)

• "There's such a demand. And this is how we come to rules that kind of are ineffective in the culture." — Claudia Drossel (10:15)

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For the full in-depth conversation, listeners are encouraged to become Patreon members at patreon.com/ProxyPodcast, where exclusive bonus episodes and additional resources are available.

Transcript

[Yowei]

Hey, everybody, it's Yowei. So recently I saw some alarming stats. Researchers estimate that 42% of Americans will eventually develop a neurodegenerative disease. And who's caring for all those people? Very often it's family people thrown into one of the hardest possible jobs with no training. In our last episode, Brian can't stop fact checking his mother in law. I talked to this great researcher, Claudia Drossel. Claudia is a psychology professor at Eastern Michigan University who works with people who have dementia and their caregivers to have a nicer, easier time together. That episode was all about how hard it is to be a caregiver. But of course, there's another person in the equation, the person with cognitive decline. And they have feelings too. Feelings that Claudia says are often misunderstood. Like when someone with Alzheimer's gets upset about something that's not true, say burglars trying to get in through the back door, when in fact there are no burglars. Claudia says it's easy to dismiss those feelings, but underneath their distress is an underlying emotional need. It's the caregiver's job to figure out. It was an eye opening conversation. It felt like Claudia was teaching me how to puzzle through these personal mysteries and makes sense of clues that otherwise get ignored. This is one of our bonus episodes. They come out around once a month for our Patreon members and we're going to play you a preview of that conversation now. To listen to the full episode, you can go to patreon.com ProxyPodcast to become a member. For $5 a month, you'll get access to ad free episodes, our library of 11 bonus interviews and counting. And at $10 a month, you get more stuff, really cute desktop and mobile screen art and a zoom call with me, which really is a perk for me as well. To sign up, go to patreon.com roxypodcast okay. Hope you enjoy the conversation. Hello, Claudia.

[Claudia Drossel]

Hi.

[Unnamed Host]

Okay, so what I want to do today is talk about the emotional dynamics of dementia care. And I want to really get into the nitty gritty. Not just because that's, you know, our lens as an emotional investigative show, but also because emotions, as far as I understand, are a critical component of giving and getting good dementia care. When I started reading about this, I was like, wow, all this is really interesting. And I also feel like there are practical lessons for people who are not caregivers even. There's lessons for just like how to be and how to be with other people and how to move through life.

[Claudia Drossel]

Yes, there Is a really valuable lesson in slowing down. Being with somebody who has a neurocognitive disorder often means being with somebody who doesn't comprehend language in the same way that you and I do. Because very often perception changes. It might actually be much more language, might be much more like sound sometimes than it is like language. And so then slowing down, making sure we're much more deliberate in our interactions to portray what we would like the other person to receive becomes a very important part of those interactions. And I think people don't think about this when they interact or when they even hear about dementia, because our first. I think our first that the person is becoming less sensitive rather than becoming more sensitive.

[Unnamed Host]

Oh, that's interesting. Can you say more about that?

[Claudia Drossel]

Let's say I'm in a rush and I'm taking. I'm making this up. I'm having a mom with a neurocognitive disease. Let's say it's Alzheimer's disease. And I'm really in a rush. In the morning, I'm trying to pick her up so I can take her to a physician's appointment. And I'm saying, go get ready. I'm really rushed with it. And I think in the end, the interaction does not matter because she forgets about it very quickly. That turns out not to be the case very often. The kind of rushed, urgent situations that we generate, they might linger for the person with dementia kind of the whole day.

[Unnamed Host]

Why?

[Claudia Drossel]

You and I can alter our context so I can actually talk myself in and out of emotions if you want to. So even my sense of urgency, I, as a therapist, sometimes might have the sense of urgency, and I can make sure that I deliberately work on my sense of urgency to seem very calm. I might seem calm to you right now, but it actually turns out I'm very nervous.

[Unnamed Host]

I would not be able to tell.

[Claudia Drossel]

But when you don't have that verbal ability anymore to kind of self regulate against what the current context is in which I'm nervous, then I might actually be swept up by my emotion much more. And sometimes we see that with people who have dementia, so. Meaning the emotion kind of lingers and they might not know anymore when what set the occasion for them to be irritable. But it was an interaction that they had in the morning. I remember a study where people did mood induction. So they took people with Alzheimer's disease either to a movie that was like a comedy and very happy movie or to a sad one, and then later on ask them what their mood was. They could not recall having seen the movie, but the mood matched what the movie had been about.

[Unnamed Host]

Oh, wow. So like the people who went to see the comedy.

[Claudia Drossel]

Oh, today's a good day.

[Unnamed Host]

Oh. And then the people who watched the.

[Claudia Drossel]

Sad movie were down and were reporting that today was just not right, but.

[Unnamed Host]

They didn't remember they watched a movie.

[Claudia Drossel]

And so I think there is a real lesson in that. And you know, it happens to us sometimes too. Don't you sometimes get into an argument with somebody and then you kind of don't remember what the argument was about anymore, but you still remember what it felt like.

[Unnamed Host]

Right.

[Claudia Drossel]

Or even waking up in the morning and noticing immediately something is not quite right and something is just lingering and you can't put your finger on what it exactly is. And I think that kind of sense we're really learning from a lot of people who have neurodegenerative diseases. I was once in a memory care unit, so that is a specialized unit for people who are severely impaired. And one of the aides was crying because her relationship had just faltered and a person had broken up with her. And within no time the people with Alzheimer's disease were standing around her and also crying. And it took us a while to calm everybody back down.

[Unnamed Host]

Oh my God.

[Claudia Drossel]

It's a contagion.

[Yowei]

Right, right, right, right. Being super empaths. What's another thing that people don't realize about what it's like to live with Alzheimer's?

[Claudia Drossel]

Most people think of memory loss when dementia is mentioned, but I just want to say it's not the memory loss that is really the biggest problem, but sensory and perceptual kind of 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. So for example, if I walk walked across the floor and the texture changes, I might actually perceive steps where there are none that puts me at high fall risk. So it's these perceptual changes and then changes in our ability to organize and plan and benefit from cues. And so this is very, very difficult for caregivers because very often caregivers put post its and reminders very well intentioned everywhere. But if the person is really not organized enough, they're not benefiting from cues in the same way anymore. So meaning the cues really don't prompt any action anymore. And I know everybody knows this feeling that you wrote yourself a note someplace and you don't remember anymore what you were actually writing. Now imagine you had that all the time with post its all over the house.

[Unnamed Host]

Yeah.

[Claudia Drossel]

So it's not the remembering. It's really kind of to organize, to put kind of thoughts into action and benefit from devices and benefit from calendars and those kinds of things that becomes the main problem down the line.

[Unnamed Host]

And obviously, a person with Alzheimer's is.

[Yowei]

Not living in a vacuum. There's everyone else in the house, and everyone's feelings are impacting each other's. So what kinds of feelings are caregivers usually bringing into the space?

[Claudia Drossel]

Yeah. So thinking about how do I really manage, how do I interact with a person who needs so much help, and how do I gauge the right kind of assistance, particularly when that person may not want to be helped by me? How do I even approach this?

[Unnamed Host]

I mean, it seems from the outside, just impossibly frustrating and exhausting and just. Yeah, it makes sense. Why a lot of caregivers are dealing with burnout and exhaustion and just anger and resentment.

[Claudia Drossel]

There's such a demand. And this is how we come to rules that kind of are ineffective in the culture. This rule that somebody else is taking care of a person with neurocognitive disorder every single day. Why can't I do it? What is wrong with me that I can't do it? This is the question that we hear a lot. And it turns out the point of comparison might be completely off. There are people who have different kinds of histories. So if a person who has a trauma history gets a neurocognitive disorder, they might actually be more scared and fearful, they might be much harder to care for and to signal safety than somebody who doesn't have a trauma history. And so if you think about these situations as situations that are already very complicated, then a lot of the caregivers compare themselves to others. And these comparisons to other caregivers are very often futile, and they're not appropriate because most situations are very, very unique situations. Everybody brings their own history, their own strengths and weaknesses to bear. And that's true for the person who's the caregiver, and truth for the person who has the neurocognitive disorder. And then we're talking about the relationship history in here. Has it been a good relationship? Has it been a complicated relationship? You know, people might have had very complicated relationships. I've seen folks who are divorced where the ex spouse then starts caring for the person that they used to be partnered with because she's the only one who kind of steps up to the task, how to manage this and how to feel about it. So you can see that there is no easy answer here.

[Unnamed Host]

So lots. Lots of complicated feelings that a caregiver might come to you with. And so what do you do? Where do you go from there?