Table 2.

Barriers Relating to the Healthcare System, Skilled Facilities, & Home Care

Level	Barrier	Exemplar Quotes
Health system	Poorly coordinated care	Once they figured out what to do, they couldn’t execute it across the team, you know, so it’s so many people. The hospice people take over for the doctor, and then the hospice people are communicating with the in-house people, but the in-house people are in so many different shifts, and— I'd call hospice. Hospice—says, “No. Your doctor has to write an order.” (2, daughter) I just can’t say enough about the importance of hospice though and palliative care and a team approach to this. And it just, it can’t be, you know, so many physicians. You know, it’s a, a turf battle and there’s not enough of a team with social work, with PT, and OT, and there absolutely has to be a team approach to dealing with patients with Lewy body dementia. (13, daughter)
	Cost	I alert anyone that has to go into a memory-care facility, the cost is astronomical… And nothing pays for it, unless you have long-term care, but that’s expensive… (6, husband) And I know it’s a business to them and they gotta make money, too, but, you know, who can afford $24, $26, $28 an hour? Are you kidding me? Nobody can afford that. You know, stupid insurance… it-it’s just ridiculous, the elder care in this country. (7, niece) Then our healthcare system… it's darn expensive to put somebody in memory care. It's darn expensive to have somebody come to your house, and our healthcare system doesn't—doesn't allow for any help with that. I think it's terrible. I think it's terrible, terrible, terrible. (18, wife)
Facilities	Trouble finding the right facility	“You cannot take her home. You have to put her into a strong memory-care facility.”… And I found one that I thought was perfect, and [they] sent a nurse to the hospital to check on my wife and see if she’d be a fit. And the shocking thing for me was they called me on a Friday afternoon and said, “We were there, and she is too much for us to handle. We cannot take her.” And it’s literally like your whole world falls apart, like, now what do I do? (6, husband) We couldn’t really find a place that would like specialize in that type of stuff… He was there [in a geriatric psychiatry unit] for three weeks. They were really wanting us to move him somewhere. We could not really find a place for my—he couldn’t go home. (19, daughter) I must have called every facility in this entire area and county, and they were full, or they didn’t take that kind of dementia patient because they needed more care. (27, wife)
	Facility unable to handle person with DLB	We got a call that said Dad had become combative and that we had to get him out of the unit immediately. They had called everywhere in the area and said, "You have to find another place for him to go… (9, daughter) And their way of dealing with a-a incident of acting out was they’d send the person to the hospital. (22, wife)
	Insufficient staffing, turnover	I didn’t know about the crisis in healthcare around, assisted living and whatnot in terms of the pipeline issues of just not having enough workers. (2, daughter) They had 22 people in this wing, and so they couldn’t necessarily check everything, and there was a rotating nursing staff. So, not everybody saw him, you know, every day… so, some of that gets lost in the shuffle. (10, son) The facility she was in was new, so it had a fair bit of staff turnover. (20, daughter-in-law)
	Desire for better staff communication with family	In retrospect what we should’ve done is sat down with a nurse and—you know, when it was—once she’d stopped eating and said, “Right, this is what you’re now going to expect.” (16, daughter) The other things, um, I would’ve liked to see in these are, in the grand scheme of things, quite minor. But the communication between the facility and the families of people in memory care about such things as staffing changes was - suboptimal. (20, daughter-in-law)
	Family conflict with staff	Those places, you know, they think they’re doing you a favor by giving somebody a shower twice a week. And I said, “Nope. She showers every day, and that’s what I want her to have.” And, um, at one point in time, they even raised the price cuz I had ‘em showering every day. (7, niece) “She’s suicidal, and we need to medicate her.” Dude, no, I don’t think so. I really laid into this one guy. I said, “Oh, my gosh, I—you’re not even thinking here… Of course this is the way she’s thinking right this second. She’s in a brand-new place, and she just—you know, and she’s ill,” and all this other stuff. So that, the whole psych eval, I don’t— the timing of that just seemed really, really odd. I didn’t think that made a lot of sense. Someone who has dementia… Brand-new environment, has no idea what’s going on. Of course she’d rather not be there. (14, daughter) It’s very difficult. Sometimes you get angry because it’s very difficult watching an aid being rough with your loved one… I’m pretty, I was very protective of my husband. And I think most people who’s a caregiver and a spouse is that way. I think they should be, the aids and the nurses should be responsible, you know, aware of that (21, wife)
Home care	Difficulty finding good caregivers	We were able to keep mother in her home. We hired a team of uh, around-the-clock team of 24/7 caregivers. That was quite a process, because we had to weed out a lot of horrid folks. (24, daughter)
	Needing someone to help take charge	The visiting nurse, um, the main one who was assigned to us, we really liked. Unfortunately, she was having a lot of health issues… We got a substitute, who we also liked, but… she didn’t seem to want to take charge as much as the other one did. And I understand she was a substitute for us, um, but the other one had a little more, “Well, I can-I can help you with this,” kinda thing whereas the substitute was like, “Well, call so-and-so and find out such-and-such.” I’m like, I’m already way beyond overwhelmed, you know? Um, so, if we could’ve had our-our regular gal, if her health hadn’t been an issue, I think it would’ve been easier. (28)