Methods: We selected 28 care partners of PLWD who had recently experienced a health crisis resulting in hospitalization or emergency room visit from a group of 100 recruited for another study. These care partners were identified via Electronic Medical Records at two local hospitals and offered participation using mailed and follow-up phone invitations. Of these 28 care partners, one care partner reported experiencing no challenges and was excluded from the analysis. Semi-structured interviews were conducted with 27 care partners (age 28 to 93, mean age: 62), who were mostly women (78%; 22% men), Non-Hispanic White (78%; 18% Asian, 4% Black/African American), adult children (59%; 26% spouses, 15% other), and college-educated (82% with a college degree). The majority (93%) viewed themselves as primary support persons for the PLWD. Interviews elicited care partners’ behaviors adopted to address challenges during PLWD’s health crises and factors that might shape resilience outcomes (recovery, gains, and PLWD’s and care partners’ health outcomes). Interviews were transcribed verbatim and we conducted an abductive thematic analysis using two coders, a codebook, and reconciliation processes.
Results: Dementia care partners faced various challenges associated with PLWD health crises, including difficulties in health management, increased care responsibilities, conflicts within the care network, emotional difficulties, and decision-making and care planning. To overcome those challenges, care partners used one or more of these five types of resilience-related behaviors, including problem-response behaviors (problem-solving, problem-distancing, problem-accepting, and problem-observing), help-related behaviors (help-seeking, help-receiving, and help-disengaging), self-growth behaviors (self-care activities, spiritual-related activities, and developing and maintaining meaningful relationship), compassion-related behaviors (self-sacrificing and relational compassionate behaviors), and learning-related behaviors (learning from other and reflection). Twelve care partners reported full recovery and ten reported partial recovery; both groups reported other positive resilience outcomes. Five felt not recovered. We identified three factors that might impact resilience outcomes - the level of challenges experienced by care partners, the adoption of multiple resilience-related behaviors, and unmet needs in accessing information, services, and self-care opportunities.
Conclusions and Implications: Results of this study supported the multidimensional framework of dementia care partners’ resilience-related behaviors and generated new hypotheses about the association between caregiving-related challenges, resilience-related behaviors, care partners’ unmet needs, and resilience outcomes. These findings will inform the development of resilience-related measures and interventions for dementia care partners.
Reference: Zhou, Y., O’Hara, A., Ishado, E., Borson, S., & Sadak, T. (2020). Developing a New Behavioral Framework for Dementia Care Partner Resilience: A Mixed Research Synthesis. The Gerontologist, gnaa218.