Lucidity in deeply forgetful people: A national U.S. survey of caregivers’ reactions

Background: Despite the prevalence and challenge of Alzheimer's disease and related dementias, glimmers of hope arise during lucid moments. Caregivers, often burdened, play a crucial role. The study explored emotional responses to witnessed episodes of unexpected lucidity in deeply forgetful people, aiming to highlight the significance and varying reactions, especially among caregivers of this population. Objective: The aim of this study was to elucidate how moments of unexpected lucidity are experienced by those who witness them, and to examine whether caregivers and non-caregivers, as well as different types of caregivers may have different emotional reactions to the episodes. Methods: A probability-based sample representative of the United States adult population aged 40 and older with internet access was employed. 5944 respondents completed screening questions regarding whether they knew an individual with dementia and had witnessed unexpected lucidity. Close to 2000 individuals answered questions regarding their emotional reactions to witnessing unexpected lucidity, which we aimed to examine in more detail. Results: Both caregivers and non-caregivers showed a tendency towards positive emotions in response to lucid episodes, yet negative emotions were also mentioned. We observed group differences (caregivers versus non-caregivers, different caregiver types) in the emotional responses for some of the examined emotions. Conclusions: Caregivers can find inspiration in these fleeting moments. The research aims to guide caregivers and enhance the understanding of the enduring self-identity of deeply forgetful people, promoting compassionate care and recognizing the significance of our shared humanity.