Evaluation of the Caring Ahead: Preparing for End-of-Life With Dementia Questionnaire

Objectives: Family caregivers of persons with dementia rarely feel prepared for end of life although preparedness predicts outcomes in bereavement. The Caring Ahead: Preparing for End-of-Life With Dementia questionnaire was developed to measure family caregiver death preparedness. The aim of this study was to evaluate questionnaire psychometrics and refine the Caring Ahead questionnaire. Design: A quantitative cross-sectional reliability study design was used to evaluate the questionnaire. Setting/Participants: Data were collected by mail from 134 English-speaking family caregivers of persons with dementia recruited from more than 50 congregate living facilities in Canada. Thirty-two partici-pants completed a test-retest. Methods: Analysis of psychometrics included exploratory factor analysis, calculation of correlation with a single-global preparedness item, Cronbach alpha, intraclass correlation coefficient (ICC) over time. Results: A 4-factor model with 20 items emerged through exploratory factor analysis with principal factors extraction and promax rotation. The revised questionnaire includes 4 factor subscales: Actions (7 items), Dementia Knowledge (5 items), Communication (4 items), and Emotions and Support Needs (4 items). Evidence was demonstrated for concurrent validity (0.44-0.55, P < .001), internal consistency (alpha > 0.7), and reliability (ICCs > 0.7). Lower levels of preparedness were reported for "knowing what the dying process with dementia may be like" and "discussing end-of-life care and preferences with health care providers." Conclusions and Implications: Preliminary evidence for validity and reliability of the refined 20-item Caring Ahead questionnaire suggests the questionnaire may be useful to clinicians and researchers seeking to assess caregivers' feelings of preparedness, identify specific areas for intervention, and eval-uate the effectiveness of caregiver interventions. Additional testing is needed to evaluate predictive validity. (c) 2021 AMDA -The Society for Post-Acute and Long-Term Care Medicine.