Identity change metaphors in public blogs written by people living with dementia and their care partners

Abstract

Dementia and the associated stigma pose unique threats to the identity of persons with dementia, triggering attempts to cope with resulting identity changes. We explore identity change narratives and metaphors written by people with dementia and care partners in public blog posts. These metaphors reflect bloggers’ motivation to adapt, adjust, and cope with identity change and their motives to challenge common misunderstandings of dementia as a complete loss of selfhood. We used the Social Identity Model of Identity Change (SIMIC) as a guiding framework. We developed a dementia model of identity change and found that bloggers engage in three motivational processes to cope with identity threats. Identity crisis is characterized by becoming aware of the dementia symptoms and their implications for identity. Identity stagnation involves feelings of helplessness and lack of motivation for capitalizing on old or new identities. Identity continuation and growth involves active coping with identity changes by maintaining old identities and developing new identities. These processes are reflected in distinct metaphors (e.g., the “going in circles” metaphor is reflective of identity stagnation). We documented how persons living with dementia maintain past identities and develop new identities that are uniquely reflective of their interests, social connections, and family ties. For instance, old and new identities are anchored in meaningful places—a café, town, or nature spaces—and family members are integral to identity continuation and growth. Finally, we documented a here-and-now identity, which is valued and reinforced in the context of close relationships with others. The current work underscores the importance of considering the multitude of identities that make an individual with dementia a person and therefore advocates for more nuanced conceptualizations of the self—away from a tragedy discourse about a complete loss of identity in people living with dementia.