Table 2.

Major Themes in Family Caregivers’ Sense-Making and Contextualization of Neuropsychiatric Symptoms

Common Examples of Sense-Making	Illustrative Quote(s)
Theme 1: Explanatory Sense-Making
▪ Care recipient is fearful or anxious	“And then I think she started to feel the fear, you know. She knows something is happening to her. She just doesn’t know what.”
▪ Care recipient is fixating on something	“I struggle with trying to explain things so as not to upset her. And I try to explain, well, I’ve only got so much time … She stays focused when she’s on a point and won’t let it go.”
▪ Care recipient is confused or forgetful	“[H]e started forgetting how to get places, and that would cause an argument.”
▪ Care recipient is frustrated with their situation	“And she’s not happy with her current situation. And I think when I get to that, I think anyone who has ultimate freedom that you can come and go and go out to eat and enjoy all of the fruits and wonders of living freely, when you start getting locked down, who would enjoy that, you know? So I can understand the frustration. And as a part of frustration you may say things that you wouldn’t normally say or think.”
Theme 2: Pattern-Oriented Sense-Making
▪ Caregiver situates onset of behavior temporally or around other major events	“A few weeks before he went in the hospital he wasn’t allowing anything to get washed, or I finally would talk him into wearing a different pair of pants just so I could wash the article. And then he could put them back on if he wanted to. But very set in his ways of what he wanted done when he wanted it done.”
▪ Caregiver anticipates responding cyclic behavior based on a consistent pattern of “early signs”	“She just, you know, I can just tell that her breathing will get really shallow. And it’s just something, usually something that she wants to know. How’s that going to work, you know, $5,200. $5,200, who’s got $5,200. How am I going to pay $5,200? […]
	I’m going to have to tell her again today. But she asks, where am I going? How much does it cost? And I feel like I need to tell her.”
▪ Caregiver contextualizes symptom based on the time of day it presents in relation to recent changes in environment	“And then with mom, I’ve been, because she’s getting, you know, very agitated and stuff at night, I’ve been having her just, you know, do the ten breaths thing. And, okay, let’s just stop and take ten deep breaths, and that works pretty good for her. […] That’ll get her calmed down a little bit too. […] It’s kind of like since the fall. And I’m hoping that it goes away, because I think it’s unfamiliar surroundings even though she doesn’t remember where she came from and, you know, she doesn’t remember her apartment. But she knows that something is different, and she knows she’s in a place.”
Theme 3: Strategy-Oriented Sense-Making
▪ Caregiver remains calm in response to urgent situation and as a de-escalation strategy	“And even though I was, you know, maybe five hours away at the most, I just can’t instantly drop what I’m doing and get there. So it would be more of a calm voice, and don’t, you know, this is not what’s going on, Mom. It’s okay. You’re okay sort of thing.”
▪ Caregiver uses distraction to address recurring requests care recipient has that cannot be met	“But then about a month later, you know, same thing. I need to go to the bank and stuff, but I managed to put her off.”
▪ Caregiver encourages interaction to address lack of engagement	“She just isn’t a social person anymore, whether it’s because she feels left out, because when we do go, everybody, you know, interacts with her or tries to get her to interact, and she just doesn’t.”
▪ Caregiver uses visual reminders and other tools to address repetitive questions	“whenever she would ask the [same] questions, you’d be like, well, it’s all written over here on the whiteboard”