Abstract
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 participants 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 evaluate the effectiveness of caregiver interventions. Additional
testing is needed to evaluate predictive validity.
Keywords
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Article info
Publication history
Published online: July 21, 2021
Footnotes
The authors declare no conflicts of interest.
Identification
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© 2021 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
