Attitudes and Perceptions of Caregivers of person with Frontotemporal Dementia in Peru: Preliminary results

• DOI: 10.1002/alz.093076
• Publication Date: 2025-01-09T09:59:32Z
• Authors: Sheila Castro‐Suarez; Maryenela Z. Illa...; Maria Meza‐Vega; José Cuenca; Serggio Lanata; Mario Cornejo‐Olivas

Abstract Background Frontotemporal dementia (FTD) is a clinical syndrome characterized by progressive changes in behavior, executive function, or language. In Latin America, persons with FTD are underrecognized diagnosed late. There lack of knowledge about the experiences have on families. Method We used mixed methods approach consisting qualitative, semi‐structured interviews that were recorded, transcribed, and analyzed using thematic analysis. Local IRB approval was obtained for this study. Result interviewed fourteen family caregivers FTD, ten them (71.4%) behavioral variant (bvFTD). female predominance (78.5%). The average education 14.5±2,3 years. Half sole caregivers, seven children, five spouses, two sisters. key themes emerging from qualitative difficulties surrounding diagnostic process, impact knowing diagnosis, challenges caregiving. Caregivers stressed how tedious it to access health services obtain specialized care disease among professionals. commented perceived skills some professionals when informing diagnosis prognosis neurodegenerative disease. Knowledge generates anguish, hopelessness, frustration caregivers. who sons daughters often adopt leadership roles within family, especially financial caregiving point view. They also change postpone life/professional plans. On other hand, if caregiver wife husband, absence their partner home stands out as main stressor, even though they remain together. Conclusion Our preliminary results highlight importance providing accessible, plain‐language support well opportunity improve training healthcare caring patients appears be dependent parental relationship.