Against nature: The experiences of parents caring for an adult child with young-onset dementia

BackgroundYoung-onset dementia (YOD), diagnosed before age 65, most often appears as Alzheimer's disease (AD) or frontotemporal dementia (FTD). Compared to late-onset dementia (LOD), YOD poses distinct caregiving, emotional, and social challenges. While research has expanded, it has largely centered on spouses and children, leaving the experiences of parents caring for an adult child with YOD underexplored and in need of greater scholarly attention<b>.</b>ObjectiveThis study aims to investigate the unique experiences of parents caring for an adult child diagnosed with YOD.MethodsQualitative semi-structured interviews were conducted with 12 Hebrew-speaking Jewish Israeli parents who provided informal care to an adult child diagnosed with YOD. The sample included cases of FTD and dementia with Lewy bodies (DLB). Participants were recruited through purposive sampling, and the data were analyzed using thematic analysis.ResultsThematic analysis revealed three themes. The first, "The Diagnosis," captured parents' descriptions of the long and complex diagnostic process, from initial recognition of symptoms to the formal diagnosis. The second, "Parent-Child Relationship," reflected experiences of loss and shifting dynamics within the relationship. The third, "Assimilation Into the Caregiver Role," highlighted significant changes in personal identity alongside emotional, and practical caregiving challenges.ConclusionsCaring for an adult child with YOD involves a profound sense of loss and presents substantial challenges to parental identity, particularly as parents themselves age. These findings highlight the critical need for tailored interventions, improved communication, and strengthened support within healthcare and mental health systems to effectively address the unique needs of parent caregivers.