Self-Reported Dementia-Related Diagnosis Underestimates the Prevalence of Older Americans Living with Possible Dementia

J Alzheimers Dis. 2021;82(1):373-380. doi: 10.3233/JAD-201212.


Background: Dementia screening is an important step for appropriate dementia-related referrals to diagnosis and treat possible dementia.

Objective: We sought to estimate the prevalence of no reported dementia-related diagnosis in a nationally representative sample of older Americans with a cognitive impairment consistent with dementia (CICD).

Methods: The weighted analytical sample included 6,036,224 Americans aged at least 65 years old that were identified as having a CICD without history of stroke, cancers, neurological conditions, or brain damage who participated in at least one-wave of the 2010-2016 Health and Retirement Study. The adapted Telephone Interview of Cognitive Status assessed cognitive functioning. Those with scores≤6 were considered as having a CICD. Healthcare provider dementia-related diagnosis was self-reported. Age, sex, educational achievement, and race and ethnicity were also self-reported.

Results: The overall estimated prevalence of no reported dementia-related diagnosis for older Americans with a CICD was 91.4%(95%confidence interval (CI): 87.7%-94.1%). Persons with a CICD who identified as non-Hispanic black had a high prevalence of no reported dementia-related diagnosis (93.3%; CI: 89.8%-95.6%). The estimated prevalence of no reported dementia-related diagnosis was greater in males with a CICD (99.7%; CI: 99.6%-99.8%) than females (90.2%; CI: 85.6%-93.4%). Moreover, the estimated prevalence of no reported dementia-related diagnosis for non-high school graduates with a CICD was 93.5%(CI: 89.3%-96.1%), but 90.9%(CI: 84.7%-94.7%) for those with at least a high school education.

Conclusion: Dementia screening should be encouraged during routine geriatric health assessments. Continued research that evaluates the utility of self-reported dementia-related measures is also warranted.

Keywords: Aging; cognitive dysfunction; geriatric assessment; geriatrics; healthcare disparities.

MeSH terms

  • Aged
  • Aged, 80 and over
  • Cognitive Dysfunction / diagnosis
  • Cognitive Dysfunction / epidemiology*
  • Dementia / diagnosis
  • Dementia / epidemiology*
  • Female
  • Humans
  • Male
  • Mass Screening
  • Neurocognitive Disorders / diagnosis
  • Neurocognitive Disorders / epidemiology
  • Referral and Consultation
  • Self Report*
  • Undiagnosed Diseases / epidemiology*
  • United States / epidemiology