Table 2 Level 2 theme descriptions and illustrative quotes from primary and secondary caregivers.

1. Support required for memory recall

Assistance includes prompts, reminders, phone calls, post-it notes; and with names and places

“So he also struggles to remember to keep his appointments with his healthcare providers. He does seem to not forget when I’m coming, because I take him shopping every week, and that he doesn’t forget about. But when he has other appointments, he often forgets about those.” (P8)

“Oh, yeah. Well, I mean, just directly, we would have an appointment scheduled for, say, Thursday at 9:00 a.m. and 9:05, 9:10, they’re not here. 9:30, okay, we call. Even though they had already received a call the day before, that they had the appointment at 9:00, but that they had forgotten about the appointment. So, usually, the subject’s been okay coming in afterwards, but they had to get a second call from us to remind them that they had already missed their appointment, and this has happened for numerous appointments.” (S12)

2. New activities/technology use requires sustained teaching assistance

Consistent 1:1 teaching required by the caregiver

“You said learning is part of cognitive. And then you will find also, if it’s a game you are teaching her, you’ll have to repeat so many times such that… My kid who is 6 years old can even capture the concept more than she does. So, it will take a long time for her to learn how it is being played and to play on her own. So, I can say she learns very slowly.” (P12)

“There is an app that’s related to the investigatal¹ product that we give to the patients, and there’s a device that we hand out in the beginning of the trial. And the subject has many issues using the device, working a device, and actually using it on a daily basis as he is required to. So, there’s been many instances where if I had to re-educate the subject on how to use the device, and there 9, 10 months that he was in the trial, it progressively got worse. And then at one point, he was pretty non-compliant with not using the actual device.” (S10)

3. Multiple elements of social communication assistance are required (e.g., support for the patient to listen, follow, respond and express)

Help with following, contributing to, and ultimately, being able to express themselves in conversations with others – particularly in a group

“Well, for her to be more independent and more organized for the future she still – she’s vague lots of times about interactions with like the therapist or the psychiatrist or whoever she’s working with in a vocational program about the details of what she needs to do or what was said. I get maybe half or three-quarters of the story and then I have to follow up to make sure that things are taken care of or that they happen. That kind of thing. She doesn’t really write them down like in a calendar or anything like that too much. So those kinds of organizational things. However, if it was where an apartment was and the address and setting up an apartment, yeah I think she can do that.” (P5)

“I have noticed because, like I said before, maybe she’s hungry. She needs something to eat. But whatever she’ll come and tell you, it’s absolutely something totally different. So you being the person, being the caregiver, you have to figure these things out for yourself. You just have to figure it out on your own. If she’s asking for something, it’s like a baby. Maybe she’s hungry. Maybe she wants to go to the toilet, or maybe she wants to go out. So, you have to battle all between those things, and figure out what she wants. So, you try and give her that. If she doesn’t want that, if that’s not what she wanted, you switch to something else until you finally get what she really wants. But having stayed with her for quite some time, you have a way of understanding them.” (P13)

“(…) I don’t think he does have a good connection to how the other people around him feels when he’s expressing himself in certain areas, because he just – he will be just communicating, and talking, and saying things without allowing the other person to kind of engage with him, in a way, unless you interrupt and say, “Hey, you know,” kind of interrupt him a little bit.” (S7)

“It’s just bothersome because they need to be able to express themselves so people will know what they’re talking about, so that they can get the help that they need if they’re seeking help. If you can get them in a group that’s like a one on one, you’re able to assist them. And that’s not going to always be the case. That’s the only thing bothersome about that, is we’re trying to get them engaged within that group setting, so they can be more comfortable, and pay attention, and try to focus on what’s being said in that group setting.” (S18)

4. Everyday living tasks require repetitive verbal support

Difficulties include those related to finance budgeting, cooking, self-care; Issues with daily routine – maintenance and understanding

“I can routinely ask him about something that I may have asked him to do. For instance, I can say, did you feed the dog? And then he’ll go, “mmm…yes.” It’s that much delayed, or maybe even longer sometimes, because I may have to repeat myself.” (P18)

“They get very frustrated. They get a little agitated. If they don’t know how to do certain things, they feel embarrassed. They try to make light of it, making excuses or try to avoid certain things. I think that’s maybe a reason why they don’t keep up with their appointments sometime because they forgot about the appointment, even though they were reminded about the appointment the day before coming. When I go and get them, they’re not ready. And even when I call and say, “I’m on my way”, they’re still not ready because they forgot that I was coming.” (S2)