The patient journey for people with dementia and their carers in Peru: From first symptoms to diagnosis and treatment

Rossini-Vilchez D.; Tateishi-Serruto F.J.; Butler C.; Cuba-Fuentes M.S.; Perez-Leon S.; Lúcar-Flores M.; Almeida-Huanca G.; Olaya-Silva L.C.; Miranda J.J.; Cardenas M.K.; Tudela J.C.V.; Bernabe-Ortiz A.; Calvo R.A.; Diez-Canseco F.; Landeiro F.T.; Moore G.; White L.; Whiteley W.; Lazo-Porras M.; Hawkins J. · Alzheimer's and Dementia (2026) · DOI: 10.1002/alz.71581

Resumen

INTRODUCTION: We explored how people with dementia (PwD) and their carers navigate Peru's health system for diagnosis and treatment. METHODS: We interviewed PwD (n = 4), carers (n = 18), and healthcare workers (n = 17) from four sites. We developed a patient journey map using thematic analysis and participant validation. RESULTS: Three journey stages emerged. Pre-diagnosis: Families seek care across different sub-health systems and facilities 2–4 years after symptom onset. Diagnosis: Specialist consultation is sought in major cities and diagnosis occurs in hospitals based on clinical presentation. Continuity of care: Care focuses on controlling behavioral and psychological symptoms, with limited access to dementia-specific drugs and non-pharmacological interventions, and heavy reliance on carers’ resources. Community mental health centers (CMHCs) are preferred facilities due to geographical and specialist accessibility and perceived care quality. DISCUSSION: Without a formal entry point to dementia care, families navigate fragmented pathways, whereas CMHCs emerge as facilities with adequate care procedures for PwD.

Instituciones: Universidad Peruana Cayetano Heredia