"It's almost like not existing": Adult children's experiences of not being recognized and their perceptions of being forgotten by their parents with dementia.

Abstract

Parents living with dementia sometimes do not recognize their adult child caregivers, who may then perceive they are forgotten. Yet, research on the experience of being unrecognized and perceived as forgotten by a parent with dementia is scarce. Object relations theory suggests healthy development of a child's sense of self during early development is linked to being held in mind by a primary caretaker. Thus, it is unclear how being unrecognized and perceived as forgotten by parents living with dementia impacts adult children's identities. To investigate this phenomenon, this qualitative study explored adult child caregivers' experiences of not being recognized in the context of a parent's dementia. The aims were to (1) develop an in-depth understanding of what it means for adult children to perceive they were unrecognized and/or forgotten by their parents with dementia and (2) gain insight on the effects of being unrecognized and perceived as forgotten on adult children's identities. Twelve adult child caregivers of mothers with dementia due to a neurodegenerative disease were recruited through purposive sampling. Interpretative Phenomenological Analysis was conducted to analyze data collected via semi-structured in-depth interviews. Findings revealed participants experienced intense emotional pain from perceptions of being forgotten resulting in injuries to their identity and sense of self. Four superordinate themes were identified: Attribution, Relationship, Emotional Landscape, and Reactions, overarching ten emergent themes. Overall, this study underscores the relational interdependence of shared memories between parents and children in shaping children's self-perceptions, sense of personal history, and felt connection with parents living with dementia. Psychotherapeutic interventions grounded in cognitive behavioral therapy, object relations theory, and distributed cognition are recommended to enhance caregiver support. Helping adult children navigate ambiguity and embrace the possibility that they are not forgotten, but remembered differently, by their parents living with dementia may offer significant emotional relief and foster resilience.