The Relationship between Knowledge and Shame: A Study on Alzheimer's Disease Among Older Korean Americans Living in Subsidized Senior Housing

Background and Purpose: Stigmatizing beliefs about Alzheimer’s disease (AD) are prevalent, contributing to delayed diagnosis, reluctance to seek help, underutilization of health and social services, and poorer disease prognosis and caregiving outcomes. In collectivistic cultures, Asian Americans often associate AD with family shame rather than viewing it as an individual health condition. Focusing on AD knowledge as a key factor, and using older Korean Americans living in subsidized senior housing as the target group, the present study examined the factors associated with shame. Guided by Goffman’s stigma theory, which explains social perceptions of stigmatized characteristics, we hypothesized that AD knowledge would be associated with reduced feelings of shame.

Methods: Data were obtained from surveys conducted in 2023 with 318 older Korean-American residents of subsidized senior housing in the Los Angeles area (M age = 79.5 years, SD = 6.66). Shame was assessed by asking participants whether they believed it is shameful to have a family member affected by AD, using a yes/no format. Knowledge about AD was measured using a 10-item scale that assesses knowledge of its nature, symptoms, course, etiology, diagnosis, and treatment. Other contextual variables considered included age, sex, marital status, education, chronic medical conditions, functional disability, and acculturation. Descriptive analyses were first performed to assess knowledge levels and the prevalence of shame. Bivariate correlations were then examined among all study variables to explore their underlying associations. This was followed by a logistic regression model of shame, including the set of covariates and AD knowledge.

Results: About 17% of the sample associated having a family member affected by AD with feelings of shame. AD knowledge scores ranged from 3 to 10, with a mean of 6.97 (SD = 1.43). The knowledge gap was most notable in the statement, “AD is a normal process of aging,” with the correct answer rate being only 24%. Relatively low rates of correct answers were also found for the statements, “AD is a form of insanity” (58.5%) and “Symptoms of depression are similar to those of AD” (67%). At the bivariate level, the feeling of shame was more prevalent among those with advanced age, female sex, lower education, more chronic medical conditions, greater functional disability, lower acculturation, and poorer AD knowledge. In the multivariate model, poorer AD knowledge (OR = 0.78, 95% CI = [0.62, 0.97]), advanced age (OR = 1.06, 95% CI = [1.01, 1.12]), and lower education (OR = 0.92, 95% CI = [0.85, 0.99]) were significantly associated with increased feelings of shame.

Conclusions and Implications: Supporting the hypothesis, our findings showed that AD knowledge was associated with reduced feelings of shame. Additionally, we identified where gaps in AD knowledge exist and who should be prioritized in interventions aimed at improving AD knowledge and reducing shame. Educational materials should focus on distinguishing AD symptoms from those of normative aging or mental illnesses. These programs should be tailored to individuals of advanced age and those with lower levels of education, with special attention to cultural relevance.