Very long pathways to diagnosis among African Americans and Hispanics with memory and behavioral problems associated with dementia

Abstract

Research shows that African Americans and Hispanics experience longer delays in dementia diagnosis than do whites. This study focuses on the duration and direction of help-seeking pathways among individuals who had either very short (median: 1 year, 9 months) or very long (median: 9 years, 2 months) times-to-diagnosis. Participants reported the frequencies of events, actions, outcomes, and results around four key time points in the pathway: First Notice of a Problem, Recognition of a Pattern, First Doctor Visit, and Final Diagnosis. Using reported frequencies of events, actions, and outcomes around these events, we constructed the modal pathway or ‘canonical narrative’ and then used correspondence analysis of the data to model short and long pathways. Short pathways were dominated by stepwise movement toward diagnosis (84.5% of inertia or variance) and some ambivalence around symptom recognition (10%). Long pathways were marked by a shift away from movement toward diagnosis (44.5%) but toward the family's taking over key quotidian tasks (55.5%). We suggest that Hispanic and African American caregivers effectively provide a kind of ‘scaffolding’ for the patient, which may in fact be adaptive rather than dysfunctional. Thus, delayed diagnoses and non-diagnosis may reflect ‘active’ choices for dealing with the disease rather than avoidance of the problem.