Understanding Family Resilience in Young-Onset Dementia: A Multiple Case Study.

Abstract

Through the lens of family resilience, exploring the experiences of families in adapting to young-onset dementia. Qualitative multiple case study. This study examined the family as a single unit of analysis, focusing on a triad including a person with young-onset dementia, their spouse and their adult child. Three family triads were included. Data collection took place between April 20 and July 4, 2023, in South Korea. Data analysis involved a two-stage process, consisting of a directed content analysis based on the family resilience framework within cases, followed by a cross-case analysis to identify themes and unique patterns across cases. The study identified six key themes: (1) Stressors due to a young-onset dementia diagnosis, (2) perception of the young-onset dementia diagnosis, (3) degree of emotional connection, (4) coping approach to young-onset dementia, (5) availability and utilisation of external resources and (6) patterns of adaptation. Furthermore, our research uncovered the interplay between themes, and how adaptations patterns of families formed either resilient or non-resilient. Our triadic approach uncovered hidden family dynamics, emphasising family-centred care. This study provides insights into unique challenges and diverse adaptation processes, suggesting tailored interventions. This study emphasises the importance of family-centred care in young-onset dementia, recognising all family members as crucial clients. Also, we suggest that healthcare professionals should develop tailored treatment plans that reflect the unique needs of each family. This study presents the unique experiences of young-onset dementia families, laying the foundation for developing effective support strategies that reflect these insights. Additionally, we emphasise the utilisation of external resources and their existence, providing a comprehensive research direction. Our research follows the EQUATOR guidelines, specifically adhering to the COREQ guidelines. No Patient or Public Contribution.