Table 2.

Loss of External Social Network of Person Living With Dementia and Caregiver

Subthemes	Quotes
Avoidance, social exclusion, and withdrawal	A. Fear/Avoidance by Surrounding Social Network: My dad, especially when my mom was gone, was very scared and emotional and labile, and easy to trigger, and so a couple friends came by and got sort of scared off … So very quickly, people didn’t come. So he was pretty lonely, except for the caregiver and me. (DPC c08, bereaved care partner, female, 45, AD)
	B. Social Exclusion of Dyad: One part that was difficult for me in the early years, that all of our friends were keeping going and doing all the things we used to do together and we were not … They weren’t purposefully doing that to exclude us, but the disease excluded us from being a part of a friendship group that continued. (DPC c20, bereaved care partner, female 72, non-AD) C. Social Exclusion of Person Living with Dementia: So she did very well [at the facility], but her dementia kept going, and something unfortunate happened … She had a group of women that she had every meal with and they started shunning her … Because her dementia got to the point where she couldn’t relate to them, and they didn’t want her sitting at their table. (DPC c11, bereaved care partner, female, 78, AD)
	D. Person Living with Dementia Withdrawal: She has really withdrawn socially from her friends and from everything. … because she said people will talk about you, and that’s her concern … She doesn’t go to church like she used to … She’s just really withdrawn. (DPC c23, care partner, female, 50, AD, MMSE 16) E. Caregiver Withdrawal: My own social life just completely deteriorated … There’s the disease and everything that you do, and then [[Spouse]] passes away, and while I know it would be good for me to be more social, I don’t have the desire to be at this point. (DPC c16, bereaved care partner, male, 61, non-AD) F. Caregiver Responsibilities: I got a dog because I don’t leave anymore. That’s a problem. Researcher 1: How come you don’t leave anymore? Caregiver: Because I have to-- because I’m the point person. (MDC, c13, bereaved care partner, female, AD)
Barriers to socializing from cognitive loss	G. Memory: “I mean, he just … he’s losing it. He’s losing people … so what am I going to do next? I’m going to do a photo album. For him. But I want him <laughs> to be able to recognize his children and his grandchildren, but even when I say, you know, ‘[[family member #5]] coming, [[family member #5]] and [[family member #6]] are coming,’ … I have to do a little bit of explanation.” (DPC c19, care partner, female, 72, AD, MMSE 19)
	H. Verbal Skills: “I try to speak less with telephone messages, and I try to avoid social gathering. My best friend before since first grade lives in [[Canadian city]]. She and I converse over an hour every Sunday afternoon, and I stopped that because I get tired…” (DPC, p10, person living with dementia, female, 77, non-AD, MMSE 28)
	I. Difficulty with Groups: “Mother’s Day was a complete disaster because he can’t be around a bunch of people. The stimulation’s too much, and he gets confused really easy. … So he got really aggravated at Mother’s Day at my sister’s, so we had to leave.” DPC c22, care partner, female, 57, non-AD)
	J. Inappropriate Social Behaviors: Well, the social issues are what are the worst, because [[Husband]], he says inappropriate things in front of people, … especially when it comes to young women, and so we don’t do a lot of social things. (DPC c29, care partner, female, 64, non-AD, MMSE 24)
	K. Safety/Independence: “Every social thing she does I have to go or she’s not comfortable … Events, community, she doesn’t participate. She used to be a big concertgoer even when she was a hundred years old. She doesn’t say, ‘I’m scared,’ but she won’t go, and if it’s more than five minutes from her house she can’t walk home, and so she’s not going.” (DPC c24, care partner, female, 59, AD, MMSE 23) L. Inability to Drive: “Not being able to drive is a biggie. I’ve gone to two Alzheimer’s group meetings. That comes out real strong, that not being able to drive … it’s a big deal for me, especially where we live. I’m not going anywhere, almost nowhere. (DPC, p04, person living with dementia, male, 73, AD, MMSE 27) M. Functional Impairment: “I’d like to get out of the house, but it’s too much work, you know. I’ve got to have my son to get me ready and have somebody to help my son to get me down and to get me up.” (MDC, p08, person living with dementia, male, 82, FAST Stage 5 (mild))
	N. Apathy: “He’s isolating himself. Very much so. I have to make him go out with me. I mean, I even try and get him out to occasionally go to see a movie or something. He doesn’t want to go, and he, honestly, he sits on a couch and watches TV all day. …. we have a couple that’s a really old friend of ours and they know what’s going on, so occasionally we’ll go out to dinner with them, and they’re so nice and kind about everything, but it’s hard to even get [[Spouse]] to have dinner with them.” (DPC c10, care partner, female, 71, non-AD, MMSE 23)

Notes: AD = Alzheimer’s dementia; DPC = Dementia Palliative Care Study; MDC = Music and Dementia Caregiving Study; MMSE = Mini-Mental Status Exam; MoCA = Montreal Cognitive Assessment; non-AD = non-Alzheimer’s dementia (includes dementia conditions listed in Table 1).