Illness Narrative

An illness narrative is the story a person and their significant others construct to give coherence to the disruptive experience of illness or diagnosis and its effects on the family system. In the context of cognitive impairment and dementia, the illness narrative typically centers on loss of identity, capabilities, independence, and former roles, casting the person with the condition as deficient and those around them as burdened. Research has shown that when assistive technology is designed primarily through an illness narrative lens (monitoring, surveillance, deficit compensation), it can inadvertently reinforce dependency and erode the self-esteem and personhood of the very individuals it aims to help. Alternative narratives, such as the biopsychosocial narrative, can shift focus toward opportunity, engagement, and relationship support.