TABLE 3.

Memory care providers’ perspectives on addressing palliative care needs of people with dementia

Domain	Example Quotations
Identifying patient and family priorities	“I think families give you the answer, if you just let them talk and you listen. They'll tell you sort of what's right or wrong for them, and realizing that there isn't a one‐size‐fits‐all, … although we have certain sense of how things should be, there are some people who can't do it the way we want them to do it.”
Managing family dynamics and decision making	“It's hard sometimes to use people's values and the way they've made decisions in this new sort of reality which is dementia. So, people can say ‘Oh, our family always makes decisions together, and we really value these sorts of things,’ but then dementia is often so different in the type of conflict it brings to families and the types of challenges.… There's no one right question that sort of gets it every time. I think it comes up sometimes after multiple conversations. They're getting to know what they can expect from us, and we're getting to know how they operate as a unit.”
Interprofessional care	Within neurology interdisciplinary team: “Well, the benefit we have at the [specialty center] is that, when we see a patient that … we feel pretty certain has a neurodegenerative disease, right, and the patient's getting to a stage where help is needed, we—I will rope in support staff, right. So nursing and social work support staff, and in the message … I will often say something like, ‘The family needs more information about future planning,’ and that's what will activate the discussions about advanced care planning … or if it's a stage of thinking of like hospice or palliative care, I will say that too. ”
	Coordinating with providers outside of neurology: “The oncologist and I had to get on the same page. That turned out to be very, very straightforward once I explained to the oncologist that Lewy body disease was a terminal neurodegenerative disease. It had a really bad trajectory. And that treating him for bladder cancer was going to make his deliria—chronic delirium worse. And so there wasn't a really good way to manage this.”
Helping with care transitions	“I think one of the biggest things, and I learned this from patients, was people always ask, ‘When will they place someone? When will they know?’ … I ask people to think about what would make … it untenable at home? Like, what is the thing that would push you over the edge … Because it's different for every person. Some people wouldn't manage incontinence to save their soul, and for other people it's no big deal to have them incontinent, it's something totally different…. So I think trying to help people, not give them the answer of when it's time to make choices, but helping them to decide what would push them to make a choice.”
Anticipatory guidance	“You know, certainly the things right now that could put her in immediate and imminent harm are, you know, if she has a terrible fall, if she has aspiration, if her mood goes south and she has, you know, suicidal thoughts and decides that it's a good idea to harm herself, and, you know, she's certainly at risk for all of those things and I've been closely watching for all those symptoms and trying to make, you know, everything as safe as possible.”
Helping maintain patient and caregiver quality of life	“What I try and tell people is we want to make every day the best that it can be, and so you don't want to spend your time trying to drill her about the date. You don't want to spend your time arguing about the fact that she thinks someone stole her wallet…. So I think the focus on truth isn't everything; sort of the quality of the moment is the most important thing.”
Managing symptoms	Support of patient: “Over time, you know, she's had the significant memory changes, visuospatial symptoms, movement changes, changes in being able to feed herself, swallow, do a lot of basic tasks, and, you know, we've added a lot of medications for her symptoms and so, you know, there's needed to be a lot of teaching and guidance on administering those medications, medication side effects, potential benefits of the medications. You know, and the medications for the mood symptoms, because that's been a big part of her management, and then with the, you know, with the movement changes, talking about physical therapy for gait and balance. Talking about ways of minimizing fall risk. Rearranging the home so that there aren't any obstacles that could increase her fall risk. That's been big.” Support of caregiver: “I ask this every visit, ‘Is there enough care at home? Do you think that there needs to be more?’ Or, ‘You mentioned that your loved one is getting confused in the middle of the night, sundowning. They're walking around in middle of the night. I know you're getting up in the middle of night and helping, and I know that's disruptive to your sleep and being able to get ready for the next day and work. Do you need someone to be there overnight and redirect your loved one or be there for them?’ You know, so certainly assessing the level of care and support at home and seeing if more resources are needed. That's something that I talk about a lot with families.”
Making connections to supportive services	“I referred her to community case management, intensive case management, with a Spanish‐speaking social worker so they can actually be in the home, and then I coordinate with that social worker, and referred her for more accessible transportation because right now they're taking the bus. It's just really high risk for falls. Also home delivered meals, we were able to, I referred her for home delivered meals to get more meal support and also kind of reduce some of the stress financially for the meals.”
Providing emotional support to patients and caregivers	“You know, we've talked about how long this has gone on and he talks a lot about how, again, how guilty he feels that he couldn't take care of her at home. I mean, he did an amazing job, but there just came a point where he couldn't do it. He worries that he wishes this would end, and he feels really guilty about that.”
Advance care planning/end of life planning and discussion	“On the Huntington's Disease team and with the neurologist, they address the end of life … in the first one or two visits. So they start having those conversations right away … I think that's really helpful for the patient and the family or the caregiver to be thinking about and really engaging in that conversation, even if we don't make decisions in that first meeting, which rarely we do. So that's really, I think that's a real benefit to them because it kind of helps frame how they want to live and what they want at the end of life, … and then we can get on with other things to support their quality of life.”