A meta-ethnography of identity formation among people with early-onset dementia

Introduction: Living with dementia can be challenging, even more so for people diagnosed before age 65. Loss of identity is one of the main subjective consequences dementia poses at this stage in life due to the loss of social relations and daily activities. While a growing body of research is reporting the experienced impact of early-onset dementia on identity for this group, studies synthesizing this knowledge are very limited. Therefore, we have conducted a meta-ethnographic review to explain how people with early-onset dementia form their sense of identity. Method: A systematic review of literature from five databases was conducted. Ten original studies published between 2004 and 2020 were included and analyzed using an interpretive approach. Findings: A conceptual interpretation emerged from the analysis, showing that social arenas and activities of daily life, as well as assumptions about dementia and natural aging made by the participants and society, influenced the participants’ sense of identity. Conclusion: Being in nonjudgmental environments can support people with early-onset dementia in creating continuity and positive connections in their personal history. Providing such environments can be a viable venue for healthcare professionals to support people with early-onset dementia in maintaining a positive sense of identity.