Popok, P. J., Reichman, M., LeFeber, L., Grunberg, V. A., Bannon, S. M., & Vranceanu, A. M. (2022). One diagnosis, two perspectives: Lived experiences of persons with young-onset dementia and their care-partners. The Gerontologist, 62(9), 1311-1323.

Background and Objectives Young-onset dementias (YODs) are a set ofprogressive illnesses that are stressful for both persons with the diagnosisand their care-partners. Although the stressors differ based on their rolesand individual experiences, both individuals are at risk for heightenedemotional distress (e.g. depression and anxiety). Understanding the uniquestressors for each partner and adaptive coping strategies to manage thesestressors is important for informing individual and couples-basedpsychosocial interventions. Research Design and Methods We conductedopen-ended individual interviews with persons with YOD (N = 12) and theircare-partners (i.e. romantic partner; N = 17) over live video. We utilized ahybrid of deductive and inductive analysis techniques to extractindividual-level themes and subthemes regarding stressors and adaptive copingstrategies. Results Persons with YOD identified stressors including burden ofYOD symptoms, loss of familial roles, resentment toward partner, isolation,and fear of the future. Care-partners identified stressors including managingtheir partners’ symptoms, increased responsibilities, caregiving role, lossof intimacy, social isolation, and grief. For adaptive coping strategies,persons with YOD endorsed use of acceptance, promotion of independence,social support, and engaging in pleasurable activities. Care-partnersendorsed value of learning about the diagnosis, using resources, optimism,social support, and self-care. Discussion and Implications Findings highlightthe unique experiences of persons with YOD and their care-partners.Identified themes can be used to inform role-specific psychosocialinterventions for both individuals and couples coping with YOD