Self-Stigma Manifestations after Diagnostic Disclosure of Early-Stage Alzheimer Jean Gajardo (1)
Table 2. Categorization of themes and sub-themes
INTRODUCTION
RESULTS
Alzheimer’s disease (AD) is a stigmatized condition. Internalized stigma (or self-stigma) is a form of personal stigma that has received limited attention in the experiences of persons who live with dementia and have been informed of their diagnosis (1).
From 2016 to 2017, 11 subjects who met criteria (6 men and 5 women) were interviewed, with average age 70 years old (64-82). Average time since diagnostic disclosure was 12 months (1-36). Table 1 describes participant characteristics.
OBJECTIVE This study aimed to describe how people experience self-stigma manifestations after the diagnosis disclosure of early- stage Alzheimer
METHODS Qualitative study with ground on cognitive, behavioral, and emotional manifestations of self-stigma according to Corrigan’s model of internalized stigma (2,3).
Selected by purposive sampling, participants were referred by Neurologist at the Neurology Unit of Hospital del Salvador, Santiago, Chile. Inclusion criteria: 60 years and older, diagnosis of dementia or Alzheimer’s disease in early stage performed by Neurologist or specialist, being aware of diagnosis (excluding anosognosia), and diagnosis disclosure during last 12 months. Interviews were conducted, transcribed, and analyzed through content analysis using sotfware NVivo Pro 11. Ethical approval for this study was granted by the Human Research Ethics Committee of the Faculty of Medicine, University of Chile.
11 subjects were not included (4 subjects refused to participate, 4 subjects could not be contacted by telephone, 3 experienced anosognosia). Four sub-themes of content were produced to describe how people experience self-stigma manifestations after the diagnosis disclosure of early- stage Alzheimer: self-devaluation, self-blame, negative emotions, self-restriction of participation.
Theme
Sub-theme 1. Self-devaluation 2. Self-blame 3. Negative emotions 4. Self-restriction of participation
Manifestations of Self-stigma Modulators of the internalization of stigma
5. The enabling role of family 6. Information needs
Figure 1. Conceptual relations of self-stigma manifestations in early-stage AD
Two emergent sub-themes were additionally produced interpreted as modulators of the internalization of stigma: the enabling role of the family, and information needs. Table 2 and Figure 1 show themes, sub-themes and conceptual relations founded on Corrigan’s model of internalized stigma. Table 1. Characteristics of participants No. Gender 1 2 3 4 5 6 7 8 9 10 11
Female Female Male Male Female Male Female Male Male Male Female
Time since Age Partnership diagnosis (Years) status (Months) 66 5 Married 79 8 Widow 65 36 Married 64 13 Married 72 12 Married 65 12 Married 64 5 Married 72 1 Married 74 18 Married 82 4 Married 74 12 Single
Living arrangements
Educational level
Living with spouse Living with daughter Living with spouse and sons Living with wife Living with husband Living with wife and son Living with husband and son Living with wife Living with wife Living with wife Living with sister
Bachelor, profesional Primary Technical Graduate Bachelor, professional Bachelor, professional Bachelor, professional Secondary Technical Bachelor, professional Secondary
(1) Werner P. Stigma and Alzheimer’s Disease: A systematic review of evidence, theory, and methods. In: Corrigan PW, editor. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. American Psychological Association; 2014. p. 223–44. (2) Corrigan PW, Kerr A, Knudsen L. The stigma of mental illness: Explanatory models and methods for change. Appl Prev Psychol [Internet]. 2005;11(3):179–90. (3) Corrigan PW. Lessons learned from unintended consequences about erasing the stigma of mental illness. World Psychiatry [Internet]. 2016;15(1):67–73.
CONCLUSIONS People with early-stage AD face a challenging process of adaptation after diagnostic disclosure, involving the internalization of negative attributes leading to ineffective coping mechanisms. Self-stigma may be a target dimension for post-diagnostic support and psychosocial interventions.
1. Universidad de Chile, Santiago, Chile; Universidad San Sebastián, Santiago, Chile. Contact:
[email protected],
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