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Updated: May 7, 2025

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Estimating undiagnosed dementia in England using capture recapture techniques.

Naaheed Mukadam1, Louise Marston2, Katie Flanagan2

  • 1University College London, London, UK. n.mukadam@ucl.ac.uk.

BMC Geriatrics
|January 3, 2025
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Summary

Capture-recapture methods revealed a significant increase in diagnosed dementia cases in England, rising from 42.4% to 84.4% between 1997 and 2018. This suggests dementia prevalence may be lower than previously thought, with underdiagnosis persisting in younger individuals and South Asian populations.

Keywords:
DementiaEpidemiologyPrevalence

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Area of Science:

  • Epidemiology
  • Gerontology
  • Public Health

Background:

  • Capture-recapture techniques have not been widely applied to estimate dementia prevalence using routinely collected data in England.
  • Estimating changes in undiagnosed dementia over time using electronic health records is crucial for public health planning.

Purpose of the Study:

  • To estimate the number of undiagnosed dementia cases in England using routinely collected data.
  • To assess changes in dementia diagnosis rates over time.
  • To investigate disparities in dementia diagnosis based on age, ethnicity, socioeconomic deprivation, and sex.

Main Methods:

  • Utilized linked primary care and hospital episode statistics from 1997 to 2018.
  • Applied the Lincoln-Petersen estimator to estimate missing dementia diagnoses and total prevalence.
  • Employed beta regression to analyze factors influencing dementia case identification.

Main Results:

  • The proportion of identified dementia cases increased from 42.4% in 1997 to 84.4% in 2018.
  • Estimated dementia prevalence in those aged ≥65 rose to 4.4% by 2018.
  • Lower diagnosis rates were observed in the South Asian ethnic group and in younger age bands, while higher rates were seen in more deprived areas.

Conclusions:

  • Dementia case identification has improved significantly, suggesting potentially lower underlying prevalence than previously estimated.
  • Dementia remains under-diagnosed in younger individuals and among the South Asian population, necessitating targeted interventions.
  • Further research is needed to replicate these findings and refine dementia prevalence estimates.