Measuring consumer access, appraisal and application of services and information for dementia (CAAASI-Dem): a key component of dementia literacy

Abstract

Background 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. 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. Methods Items 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. Results From 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. Conclusions The 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.

Dementia literacy in an ageing world

“…Complementing this scale, the Consumer Access, Appraisal and Application of Services and Information for Dementia (CAAASI‐Dem) has recently emerged to assess the skills that are needed by consumers (patient, family and carers) to detect and navigate dementia care services and information. Doherty et al (2020) advocated the combined use of the DKAS with CAAASI‐Dem, providing important elements of a DL toolbox.…”

“…Dementia is one such condition, causing major dysfunction and dependency among older people and presenting multiple challenges to all healthcare professionals, including nurses (Santoni et al, 2017). In addition, dementia and dementia‐related disorders place a high burden on family members and caregivers, who are probably to be involved in both acquiring and using health information to help to inform dementia‐related decision‐making (Doherty et al, 2020). Around the world, several older people with dementia‐related disorders is estimated to be in the region of 50 million, however, this figure is expected to increase significantly in the upcoming decades (Grande et al, 2020).…”