Does a Loved One Have Undiagnosed Dementia?

For the past five years, Barry has been going for his regular yearly checkups at his primary care doctor’s office. Two years ago, he began complaining about memory lapses. He would forget names and sometimes faces, and he’d often forget things that happened that day, such as what he had for breakfast and even a conversation he had an hour before. He was prescribed medication to help with his symptoms and was told to exercise and learn new skills to keep his brain sharp, but had never been formally diagnosed with Alzheimer’s or any other form of dementia. That is, not until his electronic medical records were scanned and flagged, prompting him to get a second and third opinion.

Dementia is Often Underdiagnosed

Nearly 10 million people are diagnosed with dementia every year. That translates to one person every three seconds. Yet, many people with symptoms of dementia are not diagnosed, and they perhaps should have been. This is one of the reasons why research dubs dementia as an underdiagnosed disease.

The underdiagnosis of dementia is not beneficial to those suffering from the disease. If you have dementia and are not given a diagnosis, it reduces opportunities for interventions and trials. Underdiagnosis may delay legal, financial, and end-of-life planning, which is vital for someone with dementia, and may give the person less time to consider and participate in making decisions that help family and friends know their wishes.

Why Dementia Goes Undiagnosed

Many times, dementia is undiagnosed because doctors might be asking the wrong questions. With older patients, many primary care physicians don’t have the experience, the training, or the time to get into meaningful cognitive assessment. Some will simply ask older patients, “How’s your memory?” but many don’t think to ask about it at all. Modern medical practice is extremely demanding and time-consuming, and many doctors aren’t inclined to probe too deeply to unearth problems that may not be immediately evident.

Another reason is that just broaching the subject can cause volatile reactions among some patients. Dr. Pierre Tarrot hears patients getting defensive, asking “What do you mean you’re concerned about my memory? Why are you saying this? My memory is fine!” He tells his patients he just wants to hear how they are doing and whether they’ve had changes over time. He uses the phrase “looking under the hood.”

New Approaches are Needed for the Timely Detection and Diagnosis of Dementia

New approaches are necessary to facilitate the timely detection and diagnosis of dementia. A long-running study at the University of Washington, called the “Adult Changes in Thought (ACT)” study, examines risk factors for Alzheimer’s disease and dementia over time. The study population of adults age 65 and older is drawn from a pool of Kaiser Permanente Washington (KPWA) patients. ACT participants undergo cognitive screening every two years and, independently, are seen as patients at KPWA. A tool examines medical records to flag patients from this group who are at the greatest risk for dementia. The study was supported in part by the National Institute of Health and it was published in the Journal of the American Geriatrics Society.

New Tool Flags Dementia in Electronic Health Records

The tool, called the EHR Risk of Alzheimer’s and Dementia Assessment Rule (eRADAR), measures data in electronic health records (EHRs) that could be used to detect patients with undiagnosed dementia and flags their records for future follow-up. Once tested and released, it could play a major role in addressing the problem of missed or late diagnoses of dementia in older adults.

How eRadar Was Developed

To develop eRADAR, researchers selected and validated 31 markers in EHRs that were associated with a higher likelihood of dementia and therefore could be used to help detect patients who might be undiagnosed. Researchers began by pinpointing the records of ACT research participants who had memory complaints or had taken dementia medication during the two years before the ACT visit date.

  • The researchers looked at a variety of markers to identify which ones were key predictors of undiagnosed dementia and to create the eRADAR model, which provides a score that increases with the likelihood that an individual has dementia.
  • Markers included demographic data such as age and sex, dementia-related symptoms such as psychosis, antidepressant prescriptions, emergency department visits, and health conditions such as cerebrovascular disease and diabetes.
  • Individuals who had eRADAR scores in the top 5% were more than five times as likely than the patient population as a whole to have unrecognized dementia, suggesting that it would be important to screen more individuals with high eRADAR scores.

Conclusions from the Study

The study demonstrated that a tool such as eRADAR, which uses readily available EHR data, could accurately detect individuals who should be screened for dementia. The researchers suggest, however, that additional research on the eRADAR model is needed to determine if the model can be improved or adapted to make it useful for other health systems, EHR data sets, and patient populations.

Why Early Diagnosis of Alzheimer’s and Dementia Is Important

Barry in our example was wise to go to the doctor every year for his annual check-ups. Diagnosis, preferably earlier in the disease course, can truly be a blessing. Education and support can assist the patient and family in finding the best treatments and avoiding harmful and unnecessary treatments. Patients and families can learn to manage symptoms, and plan for the future by establishing estate planning, incapacity planning, and long-term care planning documents.

Persons with dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who is suffering from Alzheimer’s or any other type of dementia, please call us as soon as possible to make an appointment for an initial consultation. During these difficult times, we offer phone appointments, video conference appointments, and curbside signings (but we are still physically open for in-person meetings and signings for those who desire it, of course with appropriate distancing and everybody wearing appropriate face coverings):

Alzheimer’s Planning Fairfax: 703-691-1888
Alzheimer’s Planning Fredericksburg: 540-479-1435
Alzheimer’s Planning Rockville: 301-519-8041
Alzheimer’s Planning DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.