"I'm still here": Personhood and the early-onset dementia experience

Early-onset dementia (EOD) occurs before age 65. The current study examined the lived experience from the point of view of four adults younger than 65 with dementia, particularly how they perceive their personhood. Using interpretative phenomenological analysis as the research approach, findings revealed that the EOD experience can be incorporated into six themes: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I'm Still Here. Participants' stories, as presented via these six thematic threads, reveal that individuals with EOD can have a strong sense of personhood. Findings are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice and recommendations for future research are discussed.