How Is Literacy Being Defined and Measured in Dementia Research? A Scoping Review

Literacy plays an important role in Alzheimer’s disease and related dementias (ADRD); however, less is known about how literacy is being used and defined in ADRD studies. This study reviewed terminology being used to describe types and definitions of literacy and instruments used to assess literacy in ADRD research. Among the 219 studies retrieved from 3 databases, 50 met our inclusion criteria. Literacy terms used in ADRD studies varied: literacy (n = 28), health literacy (n = 9), and dementia literacy (n = 7) were the most often used terms, followed by financial literacy (n = 4), dementia knowledge (n = 3), AD knowledge (n = 2), mental health literacy (n = 2), AD literacy, digital literacy, health literacy about incontinence, and financial knowledge (n = 1 each). Thirty studies did not define literacy terms used. Among the 20 studies defining literacy, definitions were inconsistent across studies even when they used the same term. Surveys (n = 30), open-ended questions, vignettes, or focus groups (n = 10), self-perceived (n = 3) or interviewer assessed (n = 1) literacy levels were used to assess literacy. Ten studies did not specify literacy measurement. Various literacies have been examined in ADRD research with unclear definitions and some inadequate measures. Well-defined terms with valid measures are needed to better understand the role of literacies in ADRD research.