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Johns Hopkins University

Publication Date

Spring 2011

Program Name

Brazil: Social Justice and Sustainable Development

Abstract

This investigation focuses on the effects of Alzheimer‟s disease beyond the consequences it implicates for the patient. It must be recognized that this is a disease whose repercussions affect the family caregiver of the diseased with the same strength that it disturbs the principal carrier. The sporadic characteristics of Alzheimer‟s disease, externalized through mood swings, memory loss, the eventual loss of bodily functions, and, among other symptoms, the inability to communicate, create a category of instability and volatility experienced solely by the primary caregiver. This inconsistency that the primary family caregiver comes to know not only disturbs the patient-caregiver relationship, but also affects the caregiver‟s everyday, from stress levels to kinship ties. This study was realized in Fortaleza, Brazil, with a focus on the low-income neighborhood of Cristo Redentor. The socio-economic aspect plays a part in understanding the access to support where the government does not offer it. Through interviews with caregivers, discussions with health care workers, and participatory observation, the research found that that the patient-caregiver relationship is reorganized in such a way that it does not mirror any other relationship that the patient maintains. Furthermore, due to the nature of Alzheimer‟s disease and its effects on the patient, the family caregiver must appropriate the patient‟s life narrative for it to continue. Lastly, the research emphasizes the caregiver‟s relationship with stress, noting that the experts‟ suggestions for reducing the overwhelming stress levels are by in large not heeded.

Disciplines

Civic and Community Engagement | Clinical and Medical Social Work | Family, Life Course, and Society | Mental and Social Health

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