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

Abstract

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.

Dementia Literacy in the Greater Bay Area, China: Identifying the At-Risk Population and the Preferred Types of Mass Media for Receiving Dementia Information

“…Dementia literacy is a multi-faceted concept, and its definition has been inconsistent in many previous studies [25]. In the current literature, dementia literacy often refers to knowledge and beliefs about dementia, and the ability to access, understand, and utilize health information in dementia care, and prevention.…”

Dementia Literacy and Willingness to Dementia Screening

“…Second, content validity of the instrument for measuring dementia literacy was not high (Cronbach's alpha= 0.57). Various instruments and aspects of dementia literacy have been used for dementia research [39]; thus, further research needs to accurately measure dementia literacy to better understand association between literacy and dementia. Missing data were excluded in multiple regression analyses because the numbers of incomplete data were less than 10% and the results of the analyses may not be biased [40].…”

Difficulties in reporting purpose and dosage of prescribed medications are associated with poor cognition and depression

“…Among others, health literacy might contribute to medication adherence [2]. Health literacy is "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions" [3][4][5]. Inadequate health literacy is common and has been associated with poorer health, higher medical expenses, less than optimal use of preventive health services, increased hospitalization, and medication nonadherence [6].…”