Table 3.

Couple-Level Adaptive Coping Strategies Observed in YOD Couples

Theme	Subthemes	Illustrative quotes
Theme 1: Processing emotions and cultivating acceptance	1. Normalizing frustration and anger for both partners; partners balancing each other when one is experiencing emotional distress 2. Focusing on the present moment and current challenges to minimize emotional distress (e.g., anxiety, fear/worry, loss)	It was devastating, and we gathered our kids together and told them personally and said okay, we’ve got to make a plan for the rest of our life. (Spousal caregiver 19)
Theme 2: Promoting normalcy	1. Finding a “new normal” through grieving and accepting what is lost 2. Mutual “unafraid and accepting” stance, including with role changes 3. Flexibility with future plans (e.g., Plan B, Plan C) 4. “Not dwelling”—not thinking about upsetting topics to avoid getting stuck in intense negative emotions 5. Taking things “day-by-day,” focus on what has not changed and find ways to “do the regular things together” 6. Reframing problematic behaviors of persons with YOD as how a person with YOD has always been (e.g., outspoken, reactive) to promote identity continuity 7. Mutual avoidance of upsetting topics (e.g., fact that person with YOD is ill, person with YOD’s limitations, bad days, uncertainty of future)	Your life is now different so how do you deal with the way it is now, not the way it used to be, but grieve what you lost, but move forward with what you have. (Spousal caregiver 11) I have to always remind myself that the plan may not work the way I need it to work so I have to have a Plan B. You have to have multiple scenarios. So as long as you have multiple scenarios I am okay. (Spousal caregiver 12) Yeah I mean I think because she’s so functional, we don’t dwell on limitations, and we don’t really look to a future that is dark or think about a dark future. (Spousal caregiver 10) I just kind of say “we’re going to get you through it.” I mean it happens. I have a bad day, but we kind of just move on from it. Don’t want to be stuck in it because if I did, I’d just sometimes feel worse than I do at the moment, you know. (Spousal caregiver 16)
Theme 3: Efforts to preserve person with YOD independence and identity	1. Adopting problem-solving attitude; taking challenges in stride 2. Spousal caregiver finding ways to help persons with YOD with deficits (e.g., writing step-by-step instructions about daily tasks, detailed notes, or pictures) 3. Working together to preserve persons with YOD’s contributions in daily activities 4. Attention to targeted support for persons with YOD in completing daily tasks (e.g., persons with YOD can dress and groom, but needs help picking outfit)	When I’m home cooking dinners, I try to give [person with YOD] specific tasks, where I know she can access something. (Spousal caregiver 5) [Person with YOD] is probably the most positive person I’ve ever known. And just doesn’t let it get her down, just keeps going. There are some big challenges like [person with YOD is] at a place now where she struggles to get dressed every day in the morning, although she perseveres and will not stop. (Spousal caregiver 5)
Theme 4: Collaborative and open communication	1. Open communication about symptoms, medical care, end-of-life preferences, emotions, needs and desires, and responsibility shifts 2. Collaborative planning for future to shift focus to present moment 3. Planning conversations for when both people are in best “frame of mind” (e.g., walks, date nights, dinners) 4. Willingness to pause conversations; apologizing for losing patience 5. Problem-solving communication barriers (e.g., discussing when it is helpful for the spousal caregiver to help with word-finding/sentence completion)	Every time I don’t remember something, I ask my wife. That really helps my memory a little bit too because the words I get back, sometimes will remember them. (Person with YOD 14) [Person with YOD is] not afraid to die. And she’s had discussions with all of the children about that. (Spousal caregiver 17) Every time there’s an incident we try to sit down and talk it through and try to get each other’s perspective and try to talk about what would make it better the next time. We both get frustrated … and there’s not a lot we can do every time except deal with it afterwards. (Spousal caregiver 2)
Theme 5: Social support	1. Openness with social network about YOD and problem-solving barriers to disclosure (e.g., utilizing a script) 2. Educating friends/family about YOD to combat stigma, promote understanding, and provide strategies for interacting with persons with YOD 3. Maintaining friendships and staying in touch with friends 4. Meaningfully engaging in social support network of individuals with similar lived experiences (e.g., local Alzheimer’s Association, Facebook groups) 5. Accepting practical/tangible support from the existing social network (e.g., groceries, legal advice) 6. Spirituality/religious participation—either through prayer or involvement in a church organization	We got involved with the association, we found a bit of a network you might say, of people locally that were all in the same path. (Spousal caregiver 15) We have a lot of good friends … And they’re our support group along with our daughters so you know having support people that can help out is good. (Spousal caregiver 26)
Theme 6: Meaning-making, humor, and positivity	1. Reframing dependency as positive couple intertwinement 2. Gratitude for persons with YOD’s present identity and abilities 3. Appreciation for relationship and quality time (e.g., walks, trips, drives, reading, conversations) 4. Reorienting priorities for remaining time; prioritizing time together and special experiences with family (e.g., dates/vacations) 5. Using humor to confront daily challenges/difficult conversations	I rely on [person with YOD] a lot for judgement and things with our daughter … decision making. She has wonderful insight. Despite dementia, she’s still got so much to offer. (Spousal caregiver 10) [Person with YOD] really enjoyed reading to our neighbor. It gave her so much positive energy and sense of self … a way for her to feel useful instead of just being discarded. (Spousal caregiver 10) We have participated in research and that is because we want to be helpful. We want to do anything we can that may be helpful to other people. (Spousal caregiver 11)
Theme 7: Lifestyle changes and self-care	1. Emphasis on active lifestyle and finding “physical outlets” for stress (e.g., walking, sports, home renovations) 2. Personal self-care routine/emphasis on mindfulness/relaxation 3. Lifestyle changes to promote health (e.g., nutrition, exercise, minimizing alcohol consumption)	Nothing like ripping down walls and ceilings to channel your stress … [person with YOD] has gone and focused his energy into his sports, whether its skiing or golf he pretty much does it every day. For me … I bought this shack and I have been ripping it down and recapping that has been my outlet. (Spousal caregiver 4)

Note: YOD = young-onset dementia.