Living with Young Onset Dementia: A Reconstruction of Social Agency

Abstract

While all memory disorders create disruption in a person’s life, when it appears before the age of 65 years as young onset dementia (YOD), the life course is even more radically disrupted. This type of dementia undermines the preconditions of social agency by reducing a person’s ability to act and participate. As a consequence, the social agency of people with YOD has to be reconstructed, and researchers and professionals need new knowledge of this process. Narrative analysis of the social agency of people with YOD (n = 14) and how they reconstruct their agency in the initial stage of their illness. Interviews (n = 54) were conducted after the interviewees received their YOD diagnosis and then repeated once a year for four years (2019–2022). Changes in social agency were associated with social interactions, joint action, and the individual characteristics and abilities of people with YOD. Individuals reconstruct their social agency in a dynamic process by balancing their abilities, interruptions and resistance. To understand unique changes and life situations, it helps to hear the person’s own story. To prevent stress and relationship strain, people with YOD and their family members need person-centered psychosocial interventions shortly after diagnosis.