The patient journey for people with dementia and their carers in Peru: From first symptoms to diagnosis and treatment.
Rossini-Vilchez D., Tateishi-Serruto FJ., Butler C., Cuba-Fuentes MS., Perez-Leon S., Lúcar-Flores M., Almeida-Huanca G., Olaya-Silva LC., Miranda JJ., Cardenas MK., Tudela JCV., Bernabe-Ortiz A., Calvo RA., Diez-Canseco F., Landeiro FT., Moore G., White L., Whiteley W., Lazo-Porras M., Hawkins J., IMPACT Salud Research Group .
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.