Unveiling discrepancies in depression detection among persons with dementia: A comparative analysis of caregiver and self-report

Background Depression assessment in persons with dementia (PWD) often prioritizes caregiver report, with limited integration of self-report due to concerns about PWD insight. Objective This cross-sectional study examined discrepancies between self- and caregiver-reported depression in PWD and identified neuropsychiatric and diagnostic predictors of discordance. Methods 402 PWD diagnosed with Alzheimer's disease (AD), behavioral variant frontotemporal dementia (bvFTD), semantic variant primary progressive aphasia (svPPA), or progressive supranuclear palsy (PSP) self-reported depression using the Geriatric Depression Scale (GDS), while caregivers completed the Neuropsychiatric Inventory (NPI). Discrepancies were categorized as Concordant (agreement), Discordant Type 1 (self-reported depression denied by caregiver), or Discordant Type 2 (caregiver-reported depression denied by PWD). Results One-third (33.8%) of dyads showed discrepancies: 66.2% were concordant, 10.2% Discordant Type 1, and 23.6% Discordant Type 2. PSPs had higher incidence of Type 1 discordance compared to AD (OR = 2.91, p < 0.05), while svPPAs were less likely to incur Type 2 discordance than AD (OR = 0.33, p < 0.01). Higher self-reported GDS Hopelessness, Withdrawal, and Worry predicted higher rates of Type 1 discordance, while lower Dysphoria predicted Type 2 discordance. Higher caregiver-reported NPI Apathy increased odds of Type 1 discordance (OR = 2.46, p < 0.05) and lower NPI Anxiety increased odds of Type 2 discordance (OR = 0.50, p < 0.01). Among cases with Type 1 discordance, caregivers often endorsed PWD apathy, irritability, agitation, or anxiety instead of depression. Conclusions Discrepancies in reporting depression in PWD can reflect underreporting by caregivers, not only denial by PWD. Integrating self-report, caregiver input, and clinical judgment may improve diagnostic accuracy for depression in PWD and improve care.