Illness Experiences of People with Young-onset Dementia

Abstract

Purpose: The purpose of this qualitative study was to describe the illness experiences of people with young-onset dementia who live in a community.Methods: Six community-dwelling patients with young-onset dementia, aged 65 or under, were recruited. Data were collected from August 2019 to July 2020 and analyzed using qualitative thematic analysis.Results: The data were classified into five themes and eleven sub-themes. The following themes emerged: 1) Anguish enough to want to die from dementia symptoms that hit the prime of one's life; 2) Being thrown from middle age to old age; 3) Becoming a burden due to changing roles within the family; 4) Experiencing difficulties in the diagnosis and treatment process due to onset before old age; and 5) Living with young-onset dementia in one's own life.Conclusion: The findings suggest that people with young-onset dementia have unique experiences associated with middle age Korean traits. Therefore, based on their illness experiences, effective psychosocial nursing interventions tailored to their age should be developed.