Abstract
BackgroundThe ability to locate, navigate and use dementia services and information, either for oneself or in providing care for others, is an essential component of dementia literacy. Despite dementia literacy being understood to be inadequate in many settings, no validated instrument exists to measure these elements. Here we describe the development and preliminary validation of the Consumer Access, Appraisal and Application of Services and Information for Dementia (CAAASI-Dem) tool.MethodsItems were adapted from existing health literacy tools and guided by discussion posts in the Understanding Dementia Massive Open Online Course (UDMOOC). Following expert review and respondent debriefing, a modified CAAASI-Dem was administered to UDMOOC participants online. On the basis of descriptive statistics, inter-item and item total correlations and qualitative feedback, this was further refined and administered online to a second cohort of UDMOOC participants. Exploratory factor analysis identified underlying factor structure. Items were retained if they had significant factor loadings on one factor only. Each factor required at least three items with significant factor loadings. Internal consistency of factors in the final model was evaluated using Cronbach’s alpha coefficients.ResultsFrom a pool of 70 initial items with either a 5-point Likert scale (Not at all confident – Extremely confident; or Strongly agree – Strongly disagree) or a binary scale (Yes – No), 65 items were retained in CAAASI-Dem-V1. Statistical and qualitative analysis of 1412 responses led to a further 34 items being removed and 11 revised to improve clarity. The 31 item CAAASI-Dem-V2 tool was subsequently administered to 3146 participants, one item was removed due to redundancy and EFA resulted in the removal of an additional 4 items and determination of a five factor structure: Evaluation and engagement; Readiness; Social supports; Specific dementia services; and Practical aspects.ConclusionsThe five factors and 26 constituent items in CAAASI-Dem align with functional, critical, and communicative aspects of dementia health literacy from the perspective of the carer. As a screening tool for people living with dementia and their carers, CAAASI-Dem potentially provides a means to determine support needs and may be a key component of the dementia literacy assessment toolbox.
Highlights
The ability to locate, navigate and use dementia services and information, either for oneself or in providing care for others, is an essential component of dementia literacy
Phase 1: construct identification & item generation Health literacy tools which comprehensively address multiple aspects of health literacy and provide foundation questions which could be adapted to a dementia context were identified
The first draft of the CAAASI-Dem (CAAASI-Dem V1) had a pool of 70 items, including 22 items adapted from a generic health context to a dementia context from the Health Literacy Questionnaire (HLQ) [13], 4 adapted from the AAHLS [12], and 44 items generated through content analysis of Understanding Dementia Massive Open Online Course (UDMOOC) posts
Summary
The ability to locate, navigate and use dementia services and information, either for oneself or in providing care for others, is an essential component of dementia literacy. Evolving beyond the original focus on the fundamental skills of reading, writing and numeracy, health literacy is understood to include the skills to critically analyse and use information, as well as the skills to engage effectively with the healthcare system and personal health management [2, 3]. Several health literacy screening and assessment tools have been developed to measure this evolving social construct of health literacy. Some of these are objective, performance-based assessments of functional skills such as word recognition, comprehension and basic numeracy, while others report an individual’s perceived ability and confidence to undertake health-related tasks, their social resources, and skills [11,12,13,14,15]. The skills assessed in a disease-specific tool will arguably more closely reflect the actual skills needed in relation to that disease than will a general health literacy tool
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
