Caregiver appraisals of lucid episodes in people with late-stage Alzheimer's disease or related dementias
Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring
Abstract
Introduction
Little is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL).
Methods
In an electronic, cross-sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A-LIST®, participants who reported witnessing an EL were asked how positive and stressful ELs were, if they made or changed decisions based on an EL, and what resources they sought out to explain ELs.
Results
Caregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs.
Discussion
These exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.