From affect to rules: A conceptual model of compensation in prodromal behavioral frontotemporal degeneration.

Abstract

Behavioral-variant frontotemporal dementia (bvFTD) is typically described in terms of progressive loss of social and behavioral control. However, the earliest stages of the disease may also involve active, developed forms of compensation that remain largely invisible to standard assessment. These strategies are rarely characterized, yet they may offer a unique entry point into the mechanisms by which social functioning is temporarily preserved despite emerging degeneration. Here, I report a longitudinal single-case study of a young C9orf72 repeat-expansion carrier followed from the prodromal stage to established moderate bvFTD. Based on more than a dozen hours of semi-structured interviews initiated at symptom emergence, thematic analysis identified five compensatory subthemes. Together, these strategies suggested a coherent shift in the architecture of behavioral control that remain largely invisible to standard medical or neuropsychological assessment. As implicit, flexible, and internally sustained regulation became less reliable, functioning appeared to rely on control processes that were more explicit, environmentally distributed, routine-based, and effortful. These observations can be organized around three broader principles: explicitation, externalization, and stabilization. The case suggests that early preservation in bvFTD may reflect not only residual capacities, but also an active and fragile reorganization of social and behavioral control. By foregrounding the patient's own compensatory work, this study provides a hypothesis-generating conceptual framework for understanding how everyday functioning may be maintained during the prodromal-to-dementia transition, and highlights qualitative longitudinal single-case designs and participatory research as a powerful tool for identifying hidden forms of adaptation in neurodegenerative disease and refine theoretical models of social behavior.