Table 2.
Supportive Care Decisions with Representative Excerpts
| Decision | Description | Participants | Excerpts |
|---|---|---|---|
| Seeking diagnosis | Early decision to take steps to meet with health care provider(s) about memory loss or associated symptoms | 34 Participants (25 CG, 9 PWD) | I went to see my … doctor and … he suggested that I start to see some people who could see if they could figure out what’s going on and why. (PWD_111) |
| Sharing household responsibilities | Early decision to shift previously held household tasks (IADL tasks, etc.) such as paying the bills, managing appointments and scheduling to spouse or adult children. Often not an explicit decision but a gradual taking over of a task by another individual, involving both implicit and explicit decisions making among the dyad. | 28 Participants (17 CG, 11 PWD) |
I do not pay bills or manage finances. [CG_129] does all of that now. I just can’t get it straight, and sometimes I don’t know how the hell I made a mistake, but I sure did. (PWD_129) I think I slowly began to incrementally … to take on other stuff. (CG_106) |
| Reducing activities outside the household |
Early/Middle decision Decisions to reduce scope of job or leave employment because of difficulties performing job duties, such as driving, employment |
25 Participants (19 CG, 6 PWD) | I remember we were driving one day and it was foggy, and he couldn’t find his way out of the parking lot. And I realized that this cognition problem was bigger than I thought. …. So I made him stop the car, and I drove from that day forward. (CG_129) |
| Increasing informal supportive care | Middle decision: Decision to bring in or move closer to family and friends or retirement community to increase access to support. | 18 Participants (18 CG, 1 PWD) |
It would be great if [CG_111] could take care of whatever I need, I’d rather have that, rather than pay somebody to come in. (PWD_111) Well, it was just very clear that he was not able to do the jobs that were required of him. And I was working at another place. And so I quit that job … to take over the role that he played at the bakery. … He knew that he couldn’t do it anymore. (CG_111) |
| Bringing in formal support | Middle decision: Deciding to hire formal care giver or attend an adult day care, seek help with specific activities or provide monitoring | 15 Participants (14 CG, 1 PWD) | People coming in to help, that’s probably going to happen…. If we have to bring people in to take care of me and that makes it easier for [CG_113], then I’m okay with that. (PWD_113) |
| Moving to a care facility |
Early decision: to move to retirement facility with spectrum of care Late decision: Decision to move out of home and into a more supportive living environment (assisted living or memory care) |
13 Participants (10 CG, 3 PWD) |
Well, we decided, CG_109 and I and our kids, that it would be best if I was not doing all of the things in the house and then, getting groceries, all of that sort of thing... (PWD_109) Well, … I guess if I had no brain function, and someone’s got to take care of me, and I have no conversations with anybody at that point, if it was better for the family to put me into a facility and we could work it financially, absolutely. (PWD_134) |