Undiagnosed dementia in underserved African American populations: Missed opportunities for care

BACKGROUND: Missed and late diagnoses of dementia are frequent in underserved populations and impact the implementation of dementia interventions. METHODS: Twenty dyads of persons living with dementia and comorbidity, new to the principal investigator's panel at a Geriatrics Clinic, and their caregivers. Quantitative Assessment: geriatric assessment, cognitive and staging scales, review of all medical records. Qualitative analysis: interviews with the dyad, coding for factors for late diagnosis and impact of the non-diagnosis. RESULTS: Ninety percent women, mean age: 78 years (range 65-96), all African- American. Diagnosis distribution: Alzheimer's disease (11), mixed dementia (7), vascular dementia (1), Lewy Body Disease (1). Calculated mean time from the first symptom of dementia to diagnosis: 3.3 years (range: 1-10). Of the 20 cases, 15 did not have a prior formal diagnosis of dementia; their staging at diagnosis was: severe dementia: 5, moderate dementia: 4, mild dementia: 6. Eight cases had a delay in diagnosis of at least 4 years. We estimated the impact on health outcomes of years of living with undiagnosed dementia and found a high frequency of non-compliance with medications, uncontrolled comorbid conditions, weight loss, and multiple health transitions. CONCLUSIONS: We observed a significant time delay in the diagnosis of dementia, while many participants had moderate to severe dementia when diagnosed. Strategies to improve screening and dementia diagnosis in primary care settings are needed to increase access to dementia-specific services and improve care and well-being in this vulnerable African American population and their caregivers.