. 2022 Nov 6;21:194. doi: 10.1186/s12904-022-01082-4

Table 4.

Supporting Excerpts from Thematic Analysis

Description	Elevated Amyloid	Not Elevated Amyloid
Theme 1: Perceived urgency to have or update advance directives
• Certainty / uncertainty about the future • Role of comorbid conditions or other life-threatening situations in making plans • Previous experience with dementia / end-of-life	“It’s in the back of our minds [writing advance directives], not enough to go forward. I think as each year passes, we’re more concerned with that. But we have talked about it a little bit, yes.” (Care partner, other race/ethnicity) “Well, we know what we’re dealing with. We made sure we already had wills and things, but we made sure to update them. We got our affairs in order. We went through everything together, all of our finances, everything together. I remember shortly after the diagnosis, we spent a couple of weeks together in the basement going through everything so that we both be aware of where everything was. We just got everything in order.” (Care partner, non-Hispanic White) “I did one of those [advance directive] when I went in for surgery one time [...] I don’t know why I did it then, but we did it, and I went into surgery. It was for hip replacement” (Person with cognitive impairment, non-Hispanic White) “I lost my brother recently, and he told me I wouldn’t have any decisions to make, everything’s taken care of. Well, he passed away and nobody knew what his things were, his wishes or desires. I was next of kin, so I kind of got adopted into it. Plus we were in different states, so it was not easy. It just reminded us that we better take care of some of this stuff ahead of time.” (Care partner, Hispanic White)	“At the time we did it, it was... We did it I guess about 10 or 12 years ago. And we’re both in [a] reasonable state of mind. It was a process that we felt was necessary, so there was very little anxiety connected with it.” (Person with cognitive impairment, non-Hispanic White) “We haven’t really [discussed end-of-life care preferences]. My husband and I are close, and sometimes he helps me remember, so I rely on him a lot. [...] No. We bought a plot, or a niche, already. We’ve done that, but that’s all. We haven’t even done a will yet”. (Person with cognitive impairment, other race/ethnicity) “It has not been needed. I mean, we have clearly done estate planning and have involved our friends and made sure that we have power of attorneys and we’ve made provisions if (Husband) were to outlive me, of who would manage our finances and any legal things that are needed. […] There’s not a need. He’s doing fine.” (Care partner, non-Hispanic White) “Since COVID began, we started getting serious about our will, and what’s to be done with our remains and etcetera, things about our mortgage. And we’re going to try to leave that type of instruction behind because we know they’re going to be blown over if they have to take over if we both go at the same time.” (Care partner, Hispanic White)
Theme 2: Evolving healthcare preferences
• Expectations about coping with progressing illness • Empowerment to set boundaries about care • Acceptance of disease process	“We’ve had a living will for a long time, which basically says that if I can’t care for myself, if I can’t care for myself in any way, if I can’t maintain my life in a life full of joy and full of fulfillment, then I don’t want to live. Don’t feed me. I don’t want to be fed. I don’t want to be maintained. […] It would be against my living will. It would be against any will that I have.” (Person with cognitive impairment, other race/ethnicity) “It means that you need to plan now while you still can, and eventually if things degrade your only insurance is already set in motion. Those things you can control. Other things you can’t control and you just accept as part of life.” (Care partner, other race/ethnicity) “It was difficult [discussing care preferences], but we know that eventually we all have to die anyway so we had to do it sometime. It wasn’t too difficult.” (Care partner, Hispanic White)	“So I really haven’t planned on being physically inept to take care of myself. I know one day that may come or maybe I’ll be lucky and like somebody said, they had cancer, they woke up one morning and thought some lucky [guy] had a heart attack last night.” (Person with cognitive impairment, Hispanic White) “The only thing that comes to mind is that we would want to have a cut-off date, or point. We would want to decide when we would change our opinion. I don’t expect him to have Alzheimer’s or to have mental problems that get worse. I simply do not expect it, but if they did, then we would have to discuss it then.” (Care partner, non-Hispanic White) “My mom and I are both what I would consider realists. We realize our days are numbered and we’re both not really afraid of dying from the standpoint that, it’s going to happen.” (Care partner, non-Hispanic White)
Theme 3: Circumstances of writing an advance directive
• Existing skills and knowledge to plan for future • Costs • Resources such as lawyers, accountant, books and websites • State frameworks (e.g. POLSTs) • Availability of trusted person to designate as surrogate decision-maker	“Well, the process is, we had it done, and now I’m waiting to get some money from my 401 k so I can pay for the attorneys to do this. It’s so expensive. That’s where I’m at right now.” (Person with cognitive impairment, Hispanic White) “We have a POLST, P-O-L-S-T. It’s designed to be on a bright print sheet, so that if anyone comes in the house to try and save you. It says exactly what you want. It’s a little more involved in just the regular one that they have at the hospitals, have you sign or whatever.” (Person with cognitive impairment, Non-Hispanic White) “We haven’t [discussed end-of-life preferences]. Only because this is strong family support and I don’t think I would be thrown to the wolves or left unattended. That is the least of my worry and my concern. So I’m not worried about that. I even have really good friends who I think would step in and step up to help me out if I needed help.” (Person with cognitive impairment, Black/African American)	“I’ve had a will since the beginning, being in the military. Then we got married. We had to put this together and then because of the kind of work we did, having kids we had to have all kinds of stuff put together.” (Person with cognitive impairment, Black / African American) “Well, we’ve done that separately already. Power of attorney and healthcare proxy and so forth. Our accountant actually was the one who prompted us into that”. (Person with cognitive impairment, Hispanic White) “There are educational experiences with our church about this, as well as in Lifelong Learning, which is education through the university for elder people. And so it’s something we talk about easily and share things with other people.” (CARE PARTNER, non-Hispanic White) “No, we don’t have to yet [plan for future]. We will. We will, with our family’s physician when we discuss this.” (Care partner, Black/African American)

Description

Elevated Amyloid

Not Elevated Amyloid

Theme 1: Perceived urgency to have or update advance directives

• Certainty / uncertainty about the future

• Role of comorbid conditions or other life-threatening situations in making plans

• Previous experience with dementia / end-of-life

“It’s in the back of our minds [writing advance directives], not enough to go forward. I think as each year passes, we’re more concerned with that. But we have talked about it a little bit, yes.” (Care partner, other race/ethnicity)

“Well, we know what we’re dealing with. We made sure we already had wills and things, but we made sure to update them. We got our affairs in order. We went through everything together, all of our finances, everything together. I remember shortly after the diagnosis, we spent a couple of weeks together in the basement going through everything so that we both be aware of where everything was. We just got everything in order.” (Care partner, non-Hispanic White)

“I did one of those [advance directive] when I went in for surgery one time [...] I don’t know why I did it then, but we did it, and I went into surgery. It was for hip replacement” (Person with cognitive impairment, non-Hispanic White)

“I lost my brother recently, and he told me I wouldn’t have any decisions to make, everything’s taken care of. Well, he passed away and nobody knew what his things were, his wishes or desires. I was next of kin, so I kind of got adopted into it. Plus we were in different states, so it was not easy. It just reminded us that we better take care of some of this stuff ahead of time.” (Care partner, Hispanic White)

“At the time we did it, it was... We did it I guess about 10 or 12 years ago. And we’re both in [a] reasonable state of mind. It was a process that we felt was necessary, so there was very little anxiety connected with it.” (Person with cognitive impairment, non-Hispanic White)

“We haven’t really [discussed end-of-life care preferences]. My husband and I are close, and sometimes he helps me remember, so I rely on him a lot. [...] No. We bought a plot, or a niche, already. We’ve done that, but that’s all. We haven’t even done a will yet”. (Person with cognitive impairment, other race/ethnicity)

“It has not been needed. I mean, we have clearly done estate planning and have involved our friends and made sure that we have power of attorneys and we’ve made provisions if (Husband) were to outlive me, of who would manage our finances and any legal things that are needed. […] There’s not a need. He’s doing fine.” (Care partner, non-Hispanic White)

“Since COVID began, we started getting serious about our will, and what’s to be done with our remains and etcetera, things about our mortgage. And we’re going to try to leave that type of instruction behind because we know they’re going to be blown over if they have to take over if we both go at the same time.” (Care partner, Hispanic White)

Theme 2: Evolving healthcare preferences

• Expectations about coping with progressing illness

• Empowerment to set boundaries about care

• Acceptance of disease process

“We’ve had a living will for a long time, which basically says that if I can’t care for myself, if I can’t care for myself in any way, if I can’t maintain my life in a life full of joy and full of fulfillment, then I don’t want to live. Don’t feed me. I don’t want to be fed. I don’t want to be maintained. […] It would be against my living will. It would be against any will that I have.” (Person with cognitive impairment, other race/ethnicity)

“It means that you need to plan now while you still can, and eventually if things degrade your only insurance is already set in motion. Those things you can control. Other things you can’t control and you just accept as part of life.” (Care partner, other race/ethnicity)

“It was difficult [discussing care preferences], but we know that eventually we all have to die anyway so we had to do it sometime. It wasn’t too difficult.” (Care partner, Hispanic White)

“So I really haven’t planned on being physically inept to take care of myself. I know one day that may come or maybe I’ll be lucky and like somebody said, they had cancer, they woke up one morning and thought some lucky [guy] had a heart attack last night.” (Person with cognitive impairment, Hispanic White)

“The only thing that comes to mind is that we would want to have a cut-off date, or point. We would want to decide when we would change our opinion. I don’t expect him to have Alzheimer’s or to have mental problems that get worse. I simply do not expect it, but if they did, then we would have to discuss it then.” (Care partner, non-Hispanic White)

“My mom and I are both what I would consider realists. We realize our days are numbered and we’re both not really afraid of dying from the standpoint that, it’s going to happen.” (Care partner, non-Hispanic White)

Theme 3: Circumstances of writing an advance directive

• Existing skills and knowledge to plan for future

• Costs

• Resources such as lawyers, accountant, books and websites

• State frameworks (e.g. POLSTs)

• Availability of trusted person to designate as surrogate decision-maker

“Well, the process is, we had it done, and now I’m waiting to get some money from my 401 k so I can pay for the attorneys to do this. It’s so expensive. That’s where I’m at right now.” (Person with cognitive impairment, Hispanic White)

“We have a POLST, P-O-L-S-T. It’s designed to be on a bright print sheet, so that if anyone comes in the house to try and save you. It says exactly what you want. It’s a little more involved in just the regular one that they have at the hospitals, have you sign or whatever.” (Person with cognitive impairment, Non-Hispanic White)

“We haven’t [discussed end-of-life preferences]. Only because this is strong family support and I don’t think I would be thrown to the wolves or left unattended. That is the least of my worry and my concern. So I’m not worried about that. I even have really good friends who I think would step in and step up to help me out if I needed help.” (Person with cognitive impairment, Black/African American)

“I’ve had a will since the beginning, being in the military. Then we got married. We had to put this together and then because of the kind of work we did, having kids we had to have all kinds of stuff put together.” (Person with cognitive impairment, Black / African American)

“Well, we’ve done that separately already. Power of attorney and healthcare proxy and so forth. Our accountant actually was the one who prompted us into that”. (Person with cognitive impairment, Hispanic White)

“There are educational experiences with our church about this, as well as in Lifelong Learning, which is education through the university for elder people. And so it’s something we talk about easily and share things with other people.” (CARE PARTNER, non-Hispanic White)

“No, we don’t have to yet [plan for future]. We will. We will, with our family’s physician when we discuss this.” (Care partner, Black/African American)