TABLE 5.

Challenges and barriers to addressing palliative care needs of people with dementia

	Challenges and barriers
Domain	Themes	Exemplary quotations
Disease‐specific factors	Slow disease progression with no cure or uncertain diagnosis	“I have four or five patients that haunt me because I don't know their diagnosis. They keep on calling me trying to find out what else I can do to help them, and I don't know what to do, and that's a very big stress, because I don't know what's going on with them. I don't know where to go next.”
	Patient loss of cognition and capacity	“I feel like [patients are] vulnerable and so not in control of what's going on. I think it's challenging to not know what they want. It's challenging to be so far down the road that you can't have that conversation with them.”
	Reduced access to patient at end stages of the disease	“The sort of patients that we see, when they are at that very advanced stage, at least, we don't see it. At least, you know, as a neurologist, I can tell you I don't get to see those patients. They don't come to clinic. They don't come to research. So, I'm not involved at that level of late stage care.”
Provider or practice‐specific factors	Emphasis on making a diagnosis	“You become a clinician scientist, then you start to learn, ‘Okay. I'm good at all the diagnostics,’ but then as you follow the lives of these patients then you start to realize that there's more to this than just diagnosis, of course. Everybody knows that, but another thing is to experience it and to realize that there's so much doctoring involved, you know. Like, just being there listening, talking, educating, and that's a little bit harder to teach. It's teachable, but it's harder.”
	Lack of training or standardized protocols for palliative care in dementia	“I think it could probably be more formalized. More streamlined. Sort of an algorithm, a diagnostic, kind of a decision tree for every single patient that comes through.… That would probably make our lives much easier and our patients would get probably better care quicker and more efficiently.”
	Challenges communicating about difficult topics (e.g., end of life)	“We haven't talked a lot about end‐of‐life planning. I think one of the difficulties is that, you know, when she's, of course, still—she's coming to the visits and she's still aware that things are different, that she's not cognitively well, that she's not physically well, and sort of discussion of prognosis and sort of talking about end of life in front of her is—it brings her to tears, quite frankly.”
	Concern about disrupting the relationship with the patient and/or family	“I was thinking maybe, like, early, early AD. On the first visit I said this, and then a few weeks later I get a call from his wife asking me, ‘What did you tell him?’ Like, ‘He's been destroyed,’ basically. Like, she was upset at me. So that's an example where you go, like, ‘Damn, I should not have done that.’”
Systems or cultural factors	Time	“Neurology is slow … we don't have tests like the heart doctors. If I can get your blood test, then I can tell you you're having a heart attack. We don't have that in dementia, so we rely on this sort of interview that we're doing and putting elements together, so a lot of our time goes to that … the training that we get in engaging these other resources and the social aspects, I think, they are peripherally touched.”
	Structural, cultural, and spiritual competence	“The behavioral aspect puts a lot of emphasis, on the social‐cultural background of the patient. What's the socioeconomic status, what is the educational level, what's the cultural background, what's the primary language? You know, those things can be used to make people's lives better, if you engage them correctly. This is what I mean when I say we need to be more structurally competent.”
	Stigma	“You also have to fight the big stigma of what palliative care means, so before even recommending [it], there's got to be a little bit of a conversation about what palliative care offers, what it means, kind of destigmatize it saying … ‘I'm not giving you a death sentence by sending you to palliative care.’”