Aprendizagem e repercussões na transição ao papel de cuidador familiar de pessoa idosa com demência: estudo de caso único

Abstract

Objective: To explore the journey of family caregivers as they learn the informal home care tasks required by their elderly family members following the onset of dementia, as well as to describe the main support needs, the formal support strategies received, and the learning gaps that exist in this process. Methods: This is a qualitative and descriptive study conducted using the single-case study method and grounded in the framework of Transition Theory. The study was conducted in the city of Juiz de Fora, Minas Gerais, with seven family caregivers of older adults diagnosed with Alzheimer’s Disease. Data were collected through direct observation in the home and in-depth semi-structured interviews. The material was then transcribed and subjected to content analysis using the software PyLogos to develop thematic categories. Results: Assuming the role of caregiver is a complex situational process triggered by the critical event of a medical diagnosis. Participants, predominantly women and daughters, reported significant physical, emotional, and financial strain, leading to neglect of their own health and feelings of insecurity. A severe gap was observed in the health education provided by primary care services, resulting in a lack of preparedness that drives family members to intuitively seek information online. Support from home care services, subsidized access to supplies, and spirituality stood out as facilitating factors, while lack of knowledge about the disease’s progression and the support network acted as inhibiting factors. Conclusion: Caregiving is learned primarily through informal and reactive means. The study highlights the urgent need for integrated public policies to support family caregivers and emphasizes the indispensable role of nursing in facilitating healthy transitions, which should be achieved through early educational interventions and support for the new role assumed by the caregiver.