Experience of family caregivers of people with dementia from a phenomenological perspective: a systematic review

Abstract

This study aims to understand and analyze the current research landscape on the experience of family caregivers of people with dementia. The main objective was to identify contemporary trends in scientific studies from the last five years through a systematic literature review. Articles that adopted the phenomenological approach were considered, either as a research method or as a framework for data analysis. The search was conducted in six databases (CAPES, SciELO, PePSIC, PUBMED, APA PsycNET, and LILACS), resulting in 405 publications, of which 22 met the inclusion and exclusion criteria. The studies had a broad geographic distribution, with a predominance of publications between 2023 and 2024, and the majority of caregivers were women over 50. The findings were organized into seven categories: (1) feelings and negative aspects of caregiving; (2) motivations and positive aspects of caregiving; (3) changes in family relationships and loss of identity; (4) multidimensional challenges to care provision; (5) coping strategies; (6) transition to institutions; and (7) intersections between prejudice and sociocultural contexts. The review concluded that it contributed to broadening our understanding of the experiences of caregivers of people with dementia, and highlights the need for further research in the Brazilian context.