Abstract

Standard assessment of depression in research and clinical care with persons with dementia (PWD) relies on caregiver report, and views of PWD are typically not incorporated due to concerns that they lack insight into their own neuropsychiatric status. This study explored the discrepancies between self-reported and caregiver-reported depression among PWD. Participants included 373 PWD who met criteria for Alzheimer's disease, behavioral variant frontotemporal dementia, semantic variant primary progressive aphasia, and progressive supranuclear palsy. Each PWD self-reported depressive symptoms using the Geriatric Depression Scale (GDS), including subscales of dysphoria, withdrawal, worry, worthlessness, and cognitive concern. Caregivers described the PWD using the Neuropsychiatric Inventory (NPI) depression and apathy subscales. Of the total sample, 112 (30%) patients were positive for depression on both their self-report (GDS total > =13) and their informant report (NPI depression = yes). However, 226 (60.5%) patients self-reported depression on the GDS, including dysphoria and hopelessness, but their caregivers reported no depression. Additionally, 110 (49%) patients who self-reported depression but whose informants reported no depression were described as apathetic by their informants, compared to 43 (19%) of these depressed patients whose informants did not report depression or apathy. These results suggest that overreliance on caregivers' reports of depression may seriously underrepresent rates of depression in PWD and mischaracterize patients' experience. Difficulty distinguishing depression from apathy accounted for only part of this PWD-caregiver discrepancy. Prioritizing PWD self-report of mood, and broadening caregiver education about depression, may improve care and quality of life for PWD.

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