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Resumo

Contemporary research into health treats diagnosis as a central step in illness management and trajectories. Most public health policies, especially in the case of Alzheimer's disease, claim that the earlier a diagnosis is made, the better it is for patients and caregivers. Quantitative and qualitative analysis from our longitudinal interview study, conducted with 60 caregivers of persons diagnosed with dementia, shows that this usual model of diagnosis [symptoms → diagnosis → meaning and caregiving] should be nuanced. First, diagnosis does not follow increased symptoms, but occurs rather through a process involving the observability of patients' troubles and their interpretation of said troubles as requiring medical assistance ‐the 'trouble?observability?interpretation convergence.' Second, diagnosis does not systematically trigger the mobilisation of a caregiving network: such mobilisation may follow the diagnosis, but it can also provoke it, temporarily prevent it, or have no immediate impact. These observations beg the question: To what extent does diagnosis matter? We conclude by questioning the centrality of diagnosis in the illness trajectories and its crucial role in the mobilisation of a caregiving network, that is often taken for granted, and propose to distinguish between 'anticipation diagnosis' and 'emergency diagnosis'.

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