"At least we finally found out what it was": Dementia diagnosis in minoritized populations.

BACKGROUND: Disparities in diagnosis persist among persons living with dementia (PLWD); most research on delayed diagnosis relies on medical records or administrative claims. This study aimed to identify factors that delay or facilitate dementia diagnoses in racial or ethnic minoritized PLWD and elicit care partner perspectives on timing and effects of diagnosis. METHODS: Maryland-based participants cared for a PLWD age 60 or older, self-identified as Black/African/African-American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in-depth, semi-structured interviews were conducted and analyzed using conventional qualitative content analysis methods. RESULTS: Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family-initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms. CONCLUSIONS: Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems-level and community-led public health interventions may also help address disparities in brain health education and dementia diagnosis.

Acute care utilization risk among older adults living undiagnosed or unaware of dementia.

BACKGROUND: Dementia is associated with increased risk of hospitalization and emergency department (ED) visits. Many persons with dementia are undiagnosed or unaware of their diagnosis, however. Our objective was to determine whether undiagnosed dementia or unawareness affects risk of hospitalization or ED visits. METHODS: Retrospective longitudinal cohort study of 3537 community-living adults age ≥65 enrolled in the 2011-2017 National Health and Aging Trends Study with linked fee-for-service Medicare claims. Using self or proxy reported diagnosis, proxy dementia screening questionnaire, cognitive testing, and Medicare claims diagnosis, participants were classified as having (1) no dementia or dementia, for which they were classified as (2) undiagnosed, (3) diagnosed but unaware, or (4) diagnosed and aware. Proportional hazards models evaluated all-cause and potentially preventable hospitalization and ED visit risk by time-varying dementia status, adjusting for older adult characteristics. RESULTS: Most participants (n = 2879) had no dementia at baseline. Among participants with dementia at baseline (n = 658), 187 were undiagnosed, 300 diagnosed but unaware, and 171 diagnosed and aware. In multivariable adjusted proportional hazards models, persons with undiagnosed dementia had lower risk of hospitalization and ED visits compared to persons diagnosed and aware (all-cause hospitalization aHR 0.59 [0.44, 0.79] and ED visit aHR 0.63 [0.47, 0.85]) and similar risks of these outcomes compared to persons without dementia. Individuals diagnosed but unaware had greater risk compared to those without dementia: aHR 1.37 (1.18, 1.59) for all-cause hospitalization and 1.48 (1.28, 1.71) for ED visits; they experienced risk comparable to individuals diagnosed and aware. CONCLUSION: Older adults with undiagnosed dementia are not at increased risk of acute care utilization after accounting for differences in other characteristics. Individuals unaware of diagnosed dementia demonstrate risk similar to individuals aware of the diagnosis. Increasing diagnosis alone may not affect acute care utilization. The role of awareness warrants further investigation.