Time to dementia diagnosis by race: A retrospective cohort study

Abstract

Background Non‐Hispanic Black individuals may be less likely to receive a diagnosis of dementia compared to non‐Hispanic White individuals. These findings raise important questions regarding which factors may explain this observed association and any differences in the time to which disparities emerge following dementia onset. Methods We conducted a retrospective cohort study using survey data from the 1995 to 2016 Health and Retirement Study linked with Medicare fee‐for‐service claims. Using the Hurd algorithm (a regression‐based approach), we identified dementia onset among older adult respondents (age ≥65 years) from the Telephone Interview for Cognitive Status and proxy respondents. We determined date from dementia onset to diagnosis using Medicare data up to 3 years following onset using a list of established diagnosis codes. Cox Proportional Hazards modeling was used to examine the association between an individual's reported race and likelihood of diagnosis after accounting for sociodemographic characteristics, income, education, functional status, and healthcare use. Results We identified 3435 older adults who experienced a new onset of dementia. Among them, 30.1% received a diagnosis within 36 months of onset. In unadjusted analyses, the difference in cumulative proportion diagnosed by race continued to increase across time following onset, p‐value <0.001. 23.8% of non‐Hispanic Black versus 31.4% of non‐Hispanic White participants were diagnosed within 36 months of dementia onset, Hazard Ratio = 0.73 (95% CI: 0.61, 0.88). The association persisted after adjustment for functional status and healthcare use; however, these factors had less of an impact on the strength of the association than income and level of education. Conclusion Lower diagnosis rates of dementia among non‐Hispanic Black individuals persists after adjustment for sociodemographic characteristics, functional status, and healthcare use. Further understanding of barriers to diagnosis that may be related to social determinants of health is needed to improve dementia‐related outcomes among non‐Hispanic Black Americans.

“At least we finally found out what it was”: Dementia diagnosis in minoritized populations

“…We did not examine all possible factors affecting dementia diagnosis; results highlight issues identified without significant prompting. Because of the study design and participants, we cannot comment on the role of socioeconomic status, geographic variation, and language barriers, which may affect diagnosis timing and experience 9 . Our results transfer only to the specific racial and ethnic groups included, care partners with high education levels, and individuals/regions with access to primary and specialty care.…”

“…Dementia prevalence is higher among Black/African American and Hispanic older adults than in other groups 2,3 . Underdiagnosis of dementia is common across groups 4,5 though certain minoritized populations are more likely to experience missed and/or delayed dementia diagnoses 6–9 . A dementia diagnosis may benefit care partners, as it facilitates a better understanding of the PLWD, more timely identification of reversible conditions, earlier consideration of medications and nonpharmacological interventions, validation of patient/family concerns, and planning current and future care 10–13 …”

“…Research into these factors, particularly in the United States, is limited, and most studies were conducted before dementia awareness initiatives 8,10,14–16,19–25 such as the National Plan to Address Alzheimer's Disease 26 and the CDC Brain Health Initiative 27 . Perspectives of PLWD and their families are also needed; most studies demonstrating missed or delayed dementia diagnoses in minoritized PLWD use medical records or administrative claims to make this assessment but do not consider whether PLWD or families perceive delays in diagnosis 6–9 . Lived experiences and perspectives on diagnosis, including benefits and harms, are important to truly understand whether diagnosis should be made sooner.…”

“…2,3 Underdiagnosis of dementia is common across groups 4,5 though certain minoritized populations are more likely to experience missed and/or delayed dementia diagnoses. [6][7][8][9] A dementia diagnosis may benefit care partners, as it facilitates a better understanding of the PLWD, more timely identification of reversible conditions, earlier consideration of medications and nonpharmacological interventions, validation of patient/family concerns, and planning current and future care. [10][11][12][13] Given underdiagnosis and the growing diversity of PLWD, research into barriers and facilitators of dementia diagnoses in minoritized populations is urgent.…”

“…27 Perspectives of PLWD and their families are also needed; most studies demonstrating missed or delayed dementia diagnoses in minoritized PLWD use medical records or administrative claims to make this assessment but do not consider whether PLWD or families perceive delays in diagnosis. [6][7][8][9] Lived experiences and perspectives on diagnosis, including benefits and harms, are important to truly understand whether diagnosis should be made sooner. Though evidence of benefits and harms of screening for cognitive impairment in older adults has been deemed insufficient, 28 Medicare initiatives such as the Annual Wellness Visit promote screening and early detection.…”