Who has undiagnosed dementia? A cross-sectional analysis of participants of the Aging, Demographics and Memory Study

Methods: the Aging, Demographics and Memory Study (ADAMS) Wave A participants (N = 856) each underwent a detailed neuropsychiatric investigation. Informants were asked whether the participant had ever received a doctor's diagnosis of dementia. We used multiple logistic regression to identify factors associated with informant report of a prior dementia diagnosis among those with a study diagnosis of dementia. Results: of those with a study diagnosis of dementia (n = 307), a prior diagnosis of dementia was reported by 121 informants (weighted proportion = 42%). Prior diagnosis was associated with greater clinical dementia rating (CDR), from 26% (CDR = 1) to 83% (CDR = 5). In multivariate analysis, those aged 90 years or older were less likely to be diagnosed (P = 0.008), but prior diagnosis was more common among married women (P = 0.038) and those who had spent more than 9 years in full-time education (P = 0.043). Conclusions: people with dementia who are undiagnosed are older, have fewer years in education, are more likely to be unmarried, male and have less severe dementia than those with a diagnosis. Policymakers and clinicians should be mindful of the variation in diagnosis rates among subgroups of the population with dementia.