Dementia Narratives in Brazil: Caregiver Memoirs

Abstract

Auto/biographical writings by authors who have become caregivers for people with dementias, such as Alzheimer’s disease, have been published since the 1980s, particularly in the United States, the United Kingdom, and Europe. Similar Brazilian texts, however, have begun to appear with greater frequency only over the past decade. This study seeks to provide the first comprehensive survey of all works of this kind published in Brazil, with attention to the referential and representative nature of the corpus in relation to statistical data on caregivers of people with dementia. Accordingly, we will examine issues of gender, location and conditions of care, race or ethnicity, and social class of the authors and their relatives, along with a brief commentary on the paratextual resources found in the works. We will then propose two primary modes for classifying caregiver narratives—a tragic mode and a pragmatic mode—in order to discuss, in a more pedagogical manner, the formal configurations of this subgenre and the key questions raised in similar texts, such as the presumption of identity loss in the person with dementia and the ethical tensions involved in narrating and reflecting upon the burdens of the caregiving experience without reproducing culturally pervasive stigmas and stereotypes surrounding dementia and ageing, nor violating the privacy of someone incapable of understanding or consenting to their participation in the process. Finally, we will undertake a more detailed analysis of Elaine Tavares’s Boa noite, seu Tavares (2025), which will serve both to exemplify the characteristics of the two modes discussed above and to offer a glance into the ethical/social paradigm of life writing. Along the way, we will seek to systematize the main theoretical contributions that have addressed similar objects, with the aim of facilitating the further development of these questions in future research.