Long-term impact of disclosing amyloid PET results to individuals with subjective cognitive decline.

BACKGROUND: Biomarker assessments increasingly inform the diagnostic evaluation and treatment decisions in Alzheimer disease (AD). However, evidence on the impact of amyloid positron emission tomography (PET) disclosure is primarily derived from studies of cognitively unimpaired trial participants with follow-up limited to 18 months. In contrast, long-term implications for individuals with cognitive concerns who seek medical evaluation in memory clinics remain unknown. We aimed to examine the psychosocial and behavioral impact three years after amyloid PET disclosure in individuals presenting with subjective cognitive decline (SCD) at a memory clinic. METHODS: In-depth semi-structured interviews were conducted with 17 participants from the Subjective Cognitive Impairment Cohort (SCIENCe) (67 ± 7 years; 5 female; 10 amyloid positive) 35 ± 4 months post-disclosure. All had SCD at imaging; one had progressed to mild cognitive impairment (MCI) at interview. Verbatim transcripts were analyzed inductively. RESULTS: Participants’ motivations for testing and long-term adaptation to the results were strongly shaped by cognitive concerns and personal experiences of dementia in relatives. All demonstrated accurate comprehension of their amyloid status. Those with negative scans described immediate relief and reattributed memory lapses to normal aging, while recognizing that the reassurance was provisional. Although positive scans provoked initial shock and fear of deterioration, participants valued information over uncertainty, and over time, fear attenuated as they perceived no rapid decline. Both groups regarded results as meaningful and personally actionable, informing health behavior, life priorities, and preparations for future decline. Fourteen of 17 participants spontaneously mentioned considering options for self-determined end-of-life. Regardless of amyloid status, most participants shared their result with close relatives and friends, some also informed colleagues or acquaintances, while others limited communication to avoid stigma, protect loved ones, or reduce the burden of repeated explanations. Participants valued testing, expressed no regret, and would choose disclosure again. CONCLUSIONS: Three years after disclosure, participants generally had adjusted to living with their imaging result, finding personal meaning and practical engagement without reporting ongoing psychological harm. Some reported residual concerns and uncertainty, irrespective of amyloid status. These findings offer timely guidance for clinicians and patients as biomarker disclosure is more widely incorporated into routine practice. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13195-026-02026-3.