Perceptions of Personhood and the Early Onset Dementia Experience: "I'm Still Here"

Abstract

Early onset dementia (EOD) is dementia before the age of 65. This research study examined the lived experience from the point of view of four adults under the age of 65 living with dementia, in particular examining how these individuals perceive their own personhood. One family member was also interviewed. Using Interpretative Phenomenological Analysis (IPA) as the research approach, this study revealed that the EOD experience can be incorporated into six themes: A Personal Journey, Navigating the System, The Stigma of Dementia, Connecting to the World, A Story Worth Telling and I’m Still Here. The participants’ stories as presented via these six thematic threads reveal that people with EOD can have a strong sense of personhood. Findings from this study are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice, as well as recommendations for future research are discussed.