Loss and Attainment of Identity for Individuals Experiencing Early Onset Dementia

Qualitative research over the last decade suggests that connection with others and continued engagement in everyday life contribute to quality of life for those with EOD. This study aimed to map how personal and socially attributed identity shifted as everyday life changed over the dementia continuum. The goal was to determine if common narrative and life story themes marked key indicators of perceptions about and maintenance of self, others, and everyday life roles. The materials of the study were eleven open-source video, audio, and written documents submitted by individuals experiencing EOD and their family members for public use. The selected corpus of data was read for focused themes and subthemes related to disease description/symptomatology, behavior challenges, and situational needs. Participant stories in the first and second phases of the dementia continuum described how inclusion in everyday life activities, their roles within these activities, and interactions with others were keys to personhood preservation. Perceived loss of personhood was linked to exclusion and isolation by others from everyday life participation and sustained role activities. As the disease progressed, the responsibility of personhood preservation and identity attribution shifted from the person with EOD to those who assumed caregiving roles. Identified themes reflected how both preservation and loss of identity influenced the perceived quality of life