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Difficult Diagnoses: Family Caregivers’ Experiences During and Following the Diagnostic Process for Dementia

Diagnosing Alzheimer’s disease and related dementias (ADRD) and adequately connecting families with information and supportive services continue to be challenging processes. Definitive diagnoses can take months and there is often little in place to systematically link families with community organizations. In this brief descriptive study, the researchers examined family caregivers’ (N = 106) experiences with these processes. While specialists and sophisticated tests were often used, 58% of caregivers reported that a definitive diagnosis still took 3 months or longer, with 12% waiting more than 1 year. Caregivers also indicated that they were not provided with adequate information about the disease or about community resources both at the time of diagnosis and 1-year following the diagnosis. These findings suggest that there is ample opportunity to improve services offered to families affected by ADRD and that additional training, coordination, and cooperation may enhance our ability to help during and following the diagnosis.