Delaying a Dementia Diagnosis is Risky Business. What’s at Stake?

On a global level, the prevalence of missed and delayed diagnoses of dementia is undetermined; however, recent data analyses have shown that more than half of people living with dementia (whether alone, with family, or in a supported environment) have not been formally diagnosed…while some studies have reported that the proportion of undiagnosed dementia could exceed 90%. Given the alarming growth rate in widespread cognitive impairment during the past year (exacerbated by the social and economic impacts of the pandemic), it’s worth considering both the risks of underdiagnosis and the need for primary care providers to heighten sensitivity to nascent dementia symptoms in their patients. 

For the most part, a diagnosis of dementia within a primary care setting currently relies upon suspicion based on patient profile and symptoms and/or caregivers’ concerns.  



Data from the National Health and Aging Trends Study (ongoing Johns Hopkins research begun in 2011) led by Halima Amjad, M.D., M.P.H., shows those who exhibit probable dementia symptoms while formally undiagnosed have close to double the risk of participating in potentially unsafe activities including driving, preparing hot meals, handling finances, caregiving of another, managing medications, going alone to doctors’ visits or multiple falls.

Leaving dementia undiagnosed is a direct health risk for those who cannot fend for themselves with daily living. It also risks delaying valuable opportunities for clinical care providers to create an early intervention action plan in support of the patient who is navigating dementia issues, and for their family members eager to aid them.

An assessment of “mild,” “moderate,” “severe” dementia is made through a collection of tests, including physical examinations to rule out other conditions, discussing medical history, testing mental capability, and a brain scan. In the mild dementia stage, people may experience (paraphrased from Mayo Clinic):

  • Memory loss of recent events.  
  • Difficulty with problem-solving, complex tasks and sound judgments.  
  • Changes in personality.  
  • Difficulty organizing and expressing thoughts.  
  • Getting lost or misplacing belongings. 

The DSM-5 details six cognitive domains that may be affected in both Minor and Major neurological cognitive impairments. These cognitive domains include:

  • Complex attention  
  • Executive ability  
  • Learning and memory 
  • Language  
  • Perceptual – Motor – Visual perception, praxis 
  • Social cognition  



The following is a summarization of key factors revealed in a meta analysis of multiple studies, Missed and Delayed Diagnosis of Dementia in Primary Care: Prevalence and Contributing Factors by Andrea Bradford, Mark E. Kunik, Paul Schulz,  Susan P. Williams and Hardeep Singh:

  1. Educational needs as a contributory factor to problematic diagnosis. These studies concluded that a lack of education about dementia care was an important concern for primary care physicians who are faced with diagnosing demented patients.  
  2. Concern about the consequences of misdiagnosing dementia as a reason for missed diagnosis. Physicians were reluctant to make a diagnosis of dementia because of concerns about the potential negative impact of that diagnosis on a patient and their families, causing them to defer diagnosis until certain.
  3. Attitudes in general toward dementia were a contributor to missed diagnoses. Most frequently cited was concern about the potential stigmatizing effects of the diagnosis.
  4. Testing for dementia: a potential factor contributing to missed diagnosis of dementia included lack of assessment tools and protocols, or a lack of tools perceived as helpful
  5. Communication problems, including perceived difficulty in disclosing or explaining the diagnosis of dementia. 



Early diagnosis allows for advanced-care planning and improves prognosis generally: detection at beginning stages of mild cognitive impairment can prompt evaluation of the patient for reversible causes of memory loss.

A successful care plan requires urgency towards addressing relevant causal health factors (social isolation, poor diet, smoking, etc). 

Further, when the likely course of the disease is chronic and progressive, pharmacologic intervention may inhibit and retard cognitive decline–thus the risk of delayed detection abandons an opportunity for effective intervention. 


Early diagnosis provides a runway for both the affected patient and family to adapt for planned care while strengthening patients’ opportunities to influence the care planning process.  

Missed and delayed dementia diagnosis leads to lost opportunities for treatment and increases patient and caregiver burden. 


BrainCheck’s Cognitive Assessments and Results

As a diagnostic aid, BrainCheck cannot diagnose dementia, although the tool can provide patients’ primary care physicians with valuable insight towards a diagnosis. A standard BrainCheck assessment includes tests of memory (both immediate- and delayed-recall) and cognitive processing and executive function (digit-symbol substitution, Stroop Interference, etc.).  The BrainCheck platform immediately provides validated, norm-based scores after test completion to clinicians, then
generates a baseline report of the results: rapid & reliable cognitive health technology for your practice.

For each individual test, the BrainCheck platform provides standard scores and quintile ranks. Additionally, the platform provides a composite score for an overall assessment of cognitive function. These scores are adjusted for age, derived from a normative database ranging from ages 10 to 99.

Contact us today for a free trial or to find out more.



For further reference: Interpreting Cognitive Testing Results

Signs, Symptoms & Diagnosis of Dementia: Dementia Series

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