Informal help for young people with neurological disabilities: an economic analysis of four neuro-pathological models.

Summary The purpose of this thesis is to carry out an economic analysis of the field of informal help for young adults living at home and suffering from severe neurological disease. The research question posed concerns the articulation between the organization of informal help and the kinetics of neurological pathology. The methodology is based on the construction of four neuro-pathological and economic models on the one hand, and on the constitution of four representative cohorts, each comprising a hundred "caregiver-helper" pairs on the other hand. Thus, the models of brutal pathology with stabilized residual disability, progressive pathology with increasing disability, pathology with rapid deficit kinetics, and hereditary degenerative pathology are respectively illustrated by head trauma, multiple sclerosis, brain tumor and Huntington's disease. Our work (1) highlights the economic characteristics of informal caregivers (young spouses) who are heavily involved in the production of care, (2) demonstrate the strong predetermination of the kinetics of neurological pathology on informal caregiving behaviors through different temporal indicators that must be taken into account for economic analysis (3) show the need to use a two-dimensional measure (subjective and objective) in the analysis of the burden of informal caregivers. Such a measure underlines on the one hand the insufficiency of recourse to public professional help and on the other hand the impact on caregivers of cognitive-behavioral disorders (invisible handicap) and of the neuro-palliative phase at home of a serious neurological pathology. These results open perspectives for the implementation of public action measures in France in the complex field of neurological disability.