Impact of episodes of lucidity on people living with dementia and their caregivers: A qualitative study

Abstract Background Episodes of lucidity (EL) are generally characterized by a spontaneous and unexpected return of abilities previously believed to be lost in individuals with Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD). Among the myriad implications of lucidity are the impact these episodes have on the person living with ADRD and their family caregivers. Family caregivers provide the majority of support for persons with AD/ADRD and frequently experience complex grief associated with identity and relationship changes over the course of the disease. Consequentially, a transient return of abilities and connection in the person with AD/ADRD may have a substantial impact on their conceptualization of consciousness in the care recipient living with AD/ADRD, approach to care, and emotional wellbeing. It is also not understood how persons living with AD/ADRD may respond to EL. Methods This study utilized a descriptive qualitative method employing semi‐structured interviews with family caregivers (N = 22) of persons living with AD/ADRD. Interviews elicited information about participant’s experiences with EL, interpretation of these events, and appraisal of the impact of the event on themselves and the person experiencing it. Interview data were analyzed using a modified, two‐phase thematic analysis approach. Results EL were commonly conceptualized by caregivers as illustrative of the ongoing presence of self and consciousness in the person living with AD/ADRD that they posit is at other times concealed due to cognitive impairment. Caregivers overwhelmingly reported that these episodes were valued moments that offered meaningful connection to their loved ones, also at times facilitating acts of saying goodbye or making hard decisions. Caregivers perceived EL as having variable impact on the person living with AD/ADRD. In some situations, EL were perceived as providing the person living with AD/ADRD greater capacity to engage. Sometimes, EL were described as being accompanied by insight regarding deficits and perceived as upsetting to the person living with AD/ADRD. Conclusion We found that EL can have both positive and negative impacts on caregivers and people living with AD/ADRD. Future research is needed to address ethical considerations surrounding EL and to support caregivers in how to anticipate and respond to these events.