Self-stigma in people living with dementia in Chile: A qualitative exploratory study

Abstract

Background: Self-stigma is a dimension of stigma concerning how individuals internalize negative attributes and discriminate against their own selves. Dementia is a stigmatizing condition, and there is a paucity of research exploring the manifestations and implications of self- stigma in people living with dementia in various contexts. Aim: To examine how self-stigma manifests in the experiences of people living with early-stage dementia in Santiago, Chile. Participants: Six men and five women living with early-stage dementia of the Alzheimer’s type, aged between 64 and 82 years old (mean = 70). Methods: One-on-one interviews were conducted, focusing on the experience of people living with early-stage dementia to provide insights on how self-stigma manifests. Interviews were analyzed with a qualitative content analysis approach using Corrigan’s social cognitive model of self-stigma (2016). Results: Self-stigma manifested as devaluation and blame at a cognitive level, and as restriction of participation at a behavioral level. Families and dementia education emerged as contextual elements that influenced the internalization of negative attributes in the participants’ experiences. Conclusions: Consistent with previous qualitative research, we found that self-stigma has negative consequences as it concerns emotions, self-prejudices, and self-discrimination. This study provides distinctive insights on the process of internalization of stigma and the influence of external elements. Self-stigma remains an understudied but important feature of the dementia experience, an understanding of which can lead to developing and testing supportive approaches upon diagnosis to minimize its adverse effects.