Racial and Ethnic Differences in Knowledge About One's Dementia Status

Abstract

To examine racial and ethnic differences in knowledge about one’s dementia status Prospective cohort study 2000-2014 Health and Retirement Study Our sample included 8,686 person-wave observations representing 4,065 unique survey participants age ≥70 with dementia, as identified by a well-validated statistical prediction model based on individual demographic and clinical characteristics. Primary outcome measure was knowledge of one’s dementia status as reported in the survey. Patient characteristics included race/ethnicity, age, gender, survey year, cognition, function, comorbidity, and whether living in a nursing home. Among subjects identified as having dementia by the prediction model, 43.5%-50.2%, depending on the survey year, reported that they were informed of the dementia status by their doctor. This proportion was lower among Hispanics (25.9%-42.2%) and non-Hispanic blacks (31,4%-50.5%) than among non-Hispanic Whites (47.7%-52.9%). Our fully-adjusted regression model indicated lower dementia awareness among non-Hispanic blacks (OR=0.74 95% CI: 0.58-0.94) and Hispanics (OR=0.60; 95% CI: 0.43-0.85), compared to non-Hispanic whites. Having more IADL limitations (OR=1.65, 95% CI: 1.56-1.75) and living in a nursing home (OR=2.78, 95% CI: 2.32-3.32) were associated with increased odds of subjects reporting being told about dementia by a physician. Less than half of individuals with dementia reported being told by a physician about the condition. A higher proportion of non-Hispanic black and Hispanic patients with dementia may be unaware of their condition, despite higher dementia prevalence in these groups, compared to non-Hispanic whites. Dementia outreach programs should target diverse communities with disproportionately high disease prevalence and low awareness.