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.

Keywords:

• Dementia
• Alzheimer’s disease
• stigma
• self-stigma
• qualitative
• Latin America

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the National Agency of Research and Development under Grants CONICYT PFCHA/DOCTORADO BECA NACIONAL/2012 − 21120639 and FONDAP/15150012; National Institute on Aging under Grants R01AG049692 and R01AG041781.