Table 2 Notable quotes from patients and carepartners

PWD and carepartners vary in decision-making approaches for interventions for PWD

“We talk all the time about our feelings, and she pretty much leaves the finances and that kind of thing up to me, and that’s fine with her. I mean, she trusts me, and she knows that I’m going to– one of our main goals was to have a good amount of money that we could pass on to our son.” (CP #6).

“I’m making all the–[decisions]… I would be making all the decisions for (PT #8) and I, most likely” (CP #20)

“Well, he’s still involved in the decision-making. I still give him choices, I guess, currently. But they could change in the future, and he verbally will say to me, “(CP #20), I don’t know what you’re talking about,” or, “Could you just decide for me?” Whether it’s for a text you received or to call someone back, if he’s getting agitated or frustrated, then I would be making the decision, I guess, for him…But he’s very much a part of the process, and he does let me know if he just doesn’t understand” (CP #20)

“(CP #20) does all of it. I mean, that’s what happens every day” (PT #8)

Lack of discussion about impact of medical intervention on dementia posed a barrier to decision-making and burdened dyads

“I’ve asked them, all the reading that I’ve done, what stage is he in, and the doctor at [institution] said, “Don’t even look at stages,” he said, “we don’t think of it that way.” No, we haven’t gotten a lot of answers about anything…Well, I mean how quickly is this going to progress? They don’t know. How long is he going to be able to function as well as he is now? They don’t know. I mean I don’t ever get answers to anything.”(CP #13)

“I wish [he] would have told me a little bit more about how the general anesthesia and the hospital experience would have made her. Because she was really agitated. She was really confused.” (CP #7)

“Oh, no. No. No. And we have a doctor at [institution] who is aware. We go like twice a year to see him, but anytime we have questions or something. But that never came under consideration at all, no. I didn’t believe that the surgeries -- I never even asked anybody. I didn’t believe that the surgeries should be put off, and nor did he, and nor did the doctors (CP #11)

“The main takeaway is that you really have to advocate on behalf of your loved ones and yourself in terms of medical care and whatnot. I mean, you have to ask a lot of questions. In some cases, sometimes you have to challenge things.” (CP #9)

Medical intervention decisions were an inflection point to evaluate values for dyads and involved tradeoffs with implications for end-of-life care and quality of life

“So I can definitely imagine a situation where if [the patient] were really sick, and let’s say she had a real bad stomach ailment or something like that, and she just didn’t want to have any medical care, see any care at all, I can imagine that would be a situation where I would override what she wishes in that moment and seek care.” (CP #9)

“And you get to a certain age, it’s like so you can have a lot of chemo and get yourself all together and then die tomorrow because of your age. So that’s a factor in decisions with regard to surgery. If you can live with stuff– I think both [the patient] and I are of the same mind. If you can live with it, then do so.” (CP #1)

Decisional quality were facilitated by a trusting relationship with clinicians and a multidisciplinary team approach.

Trusting relationship with clinicians

“Yeah, just work with your medical team. That’s the best advice I have, yeah. They’ve been the biggest help to me, just knowing they’re there; I can call and talk to people, and… good help that way” (CP #4).

“Some do. Some don’t. I think the best do understand that. And I think those who don’t are just sort of blindly– you become a series of body parts that needs to be fixed, and then that’s how it’s approached. But I think, really, superior physicians really get it about the quality of life. And it’s a real factor, I think, when you’re making those kinds of decisions” (CP #1).

Multidisciplinary Team Approach

“And then we would break off into separate groups. And all the caregivers would go into one room, and the patients, I guess, whatever, our loved ones, would go in another room. And I always found it so helpful, because in that support group of just the caregivers getting together, or through Surrey, I guess, also. There was a caregiver support group there also. That, to me, would be the place to have those discussions” (CP #1).

“That they have a nurse advocate for the patient so that when these doctors come in you have someone who is listening and documenting what is going on. That’s very important” (CP #2).