The road to young-onset dementia diagnosis: Findings from the Joint Solutions Project.

INTRODUCTION

Diagnosis of young-onset dementia (YOD) is often delayed due to atypical presentations and lack of awareness. This study explored diagnostic experiences in Australia.

METHODS

This Joint Solutions sub-study employed a mixed-methods approach. Surveys and focus groups targeted people with YOD, caregivers, and clinicians across Australia. Quantitative data were analyzed using descriptive statistics and comparisons, while qualitative data underwent thematic analysis.

RESULTS

There were 313 participants, mostly female and nearly half representing lived experience. The average age at symptom onset was 55.8 years, and at diagnosis, 57.9 years. Positive aspects included timely diagnoses and involvement of specialized clinicians. Clinicians emphasized comprehensive history-taking and a multifaceted diagnostic approach. Geographical barriers, variations in diagnosis delivery, and caregiver education needs were noted.

DISCUSSION

This study highlights improved diagnostic timelines but ongoing barriers in YOD knowledge and equitable access to care. Raising awareness, improving clinician education, and streamlining referral processes are essential.

HIGHLIGHTS

Timeliness of younger-onset dementia diagnosis appears to have improved in Australia. Access to care varies in availability and quality, with no standardized pathways. Knowledge of younger-onset dementia is lacking in both healthcare and the community. Comprehensive history-taking and a multifaceted diagnostic approach are crucial. Clinician sensitivity is valued, balanced with tailored education on diagnosis.