Family Resilience in Young-Onset Dementia: A Qualitative Exploration of Coping, Adaptation, and Support

Diah Priyantini

doi:10.30651/jkm.v11i1.33674

Authors

Diah Priyantini Department of Medical Surgery, Gadar and Critical, Faculty of Health Sciences, University of Muhammadiyah Surabaya, Surabaya, Indonesia

DOI:

https://doi.org/10.30651/jkm.v11i1.33674

Keywords:

Adaptation; coping; family; resilience; support; young-onset dementia; YOD

Abstract

Introduction: Young-onset dementia (YOD) affects people before the age of 65 and places families in a caregiving situation that differs fundamentally from late-onset dementia, because it strikes during the peak of productive, parental, and financial life. Although family resilience is increasingly recognised as a determinant of caregiving sustainability, little is known about how families in Indonesian community settings construct that resilience.

Methods: A descriptive qualitative study was conducted in January 2025 in the catchment area of a community health centre (Puskesmas) in East Surabaya, Indonesia. Six family caregivers of people with YOD were recruited by purposive sampling, with recruitment stopping once data saturation was reached. Data were collected through in-depth semi-structured interviews (55-80 minutes) and analysed using Braun and Clarke's six-phase reflexive thematic analysis. Walsh's Family Resilience Framework served as a sensitising lens. Trustworthiness was established following Lincoln and Guba's criteria, and reporting followed the COREQ checklist.

Results: Participants comprised three spouses, two adult children, one sibling and one parent (aged 27-68 years) caring for relatives diagnosed at 39-56 years of age. Five themes were generated: (1) the unnamed journey towards diagnosis; (2) reconstructing meaning and rescaling hope; (3) restructuring the family: role flexibility and caregiver sustainability; (4) from silence and conflict to open conversation; and (5) surviving in the gaps of the support system. Across themes, families described resilience not as the absence of distress but as an iterative capacity to reorganise roles, renegotiate meaning, and keep relational bonds intact while expectations were repeatedly revised downwards.

Conclusion: Family resilience in YOD emerged as a relational and dynamic process rather than an individual trait. Nursing services in primary care should shift from a patient-only focus towards a family-unit approach that includes routine caregiver assessment, anticipatory and future-oriented family conversations, strength-preserving care strategies, a named care navigator, and YOD-specific peer support.

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