Dyadic coping experience of persons with young-onset dementia and their spousal caregivers: A review of qualitative studies and meta-synthesis

Abstract

Background

Persons with young-onset dementia (PwYOD) often face issues with social role conflicts, financial crises, and family relationship breakdowns. Spousal caregivers (SCGs) balance numerous family responsibilities while facing a significant burden of care and emotional strain. Currently, an increasing number of qualitative studies focus on the experience of illness from the perspective of the YOD couple's dyadic experience.

Objective

This study aims to synthesize the qualitative findings of the dyadic coping experiences of PwYODs and SCGs.

Methods

We conducted a comprehensive search in 10 databases from their inception to 1 October 2024. Methodological quality assessment and extraction were performed using the Joanna Briggs Institute Critical Appraisal Tool for Qualitative Research, and the research results were classified and synthesized.

Results

A total of 19 studies were included, with 136 findings extracted and grouped into 14 categories, which were synthesized into six synthesized findings. These synthesized findings were: (1) Diagnosis brings mixed emotions; (2) Interrupt the previous trajectory of life; (3) Deeply troubled by the stigma of illness; (4) PwYODs and SCGs desire multiple support; (5) Positive coping and personal growth; (6) Social factors lead to differences in dyadic coping.

Conclusions

The findings show that PwYODs and SCGs experience different emotional changes and personal needs in the face of the disease, and use multiple strategies to cope with life. Ultimately, this review elaborates on the arguments for helping PwYODs and SCGs access practical needs and support resources.