Digital detection of dementia: Using AI to identify undiagnosed dementia

Rising to meet the formidable challenge of the timely diagnosis of dementia, research scientists from Regenstrief Institute, IUPUI and the medical schools of Indiana University and University of Miami are conducting the Digital Detection of Dementia study, a real-world evaluation of the use of an artificial intelligence (AI) tool they developed for early identification of Alzheimer’s disease and related dementias in primary care, the setting where most adults receive healthcare. Individuals identified as cognitively impaired will be referred for diagnostic services.

The AI tool, called a passive digital marker, is a machine learning algorithm the researchers developed, trained and tested. The tool uses natural language processing to cull unstructured information in combination with structured data from a patient’s electronic health record. These could include mention of memory issues, a notation of vascular concerns, comorbid conditions or other factors potentially linked to dementia.

“Between 50 to 80 percent of dementia cases are unrecognized by the healthcare system in the U.S. And, if you include patients living with mild cognitive impairment, that number might actually climb to higher than 80 percent of cases that are not recognized,” said Regenstrief Institute and Indiana University School of Medicine faculty member Malaz Boustani, M.D., MPH, senior author of the Digital Detection of Dementia study protocol paper, published in the peer reviewed journal Trials. “In this new study we are evaluating the practical use of our tool when used alone and when used with an accompanying patient-reported outcomes survey.

“Unfortunately, the lay public believe there’s nothing you can do if you find out you or a family member has Alzheimer’s disease, but that is not true. Over the past 20 years we have developed, validated and have been operating a comprehensive collaborative care model for dementia that reduces the disease burden for the patient, reduces caregiver stress and reduces inappropriate hospitalizations, keeping people living at home longer and lowering overall costs to them and to the healthcare system,” he said.

Few primary care practices are designed for the timely detection of Alzheimer’s disease. The limited time that primary care clinicians have to spend with patients, the need to focus on the health problems which brought the patient to the clinic, as well as the stigma of dementia are the major reasons for lack of recognition of the condition, according to Dr. Boustani. In addition, he notes, there is no demand from the public for dementia diagnoses, most likely driven by the stigma of dementia, lack of public knowledge about benefits of early recognition of Alzheimer’s, and issues related to health insurance coverage.

The first aspect of the Digital Detection of Dementia study is a clinical trial, already underway in Indianapolis enrolling patients seen in primary care clinics at federally qualified health centers affiliated with Eskenazi Health. The participants in this trial are expected to be predominantly people who are Black and reside in urban areas. The second clinical trial of the study commences early in 2023 in Miami, Florida, at University of Miami primary care clinics. The participants are expected to be predominantly Hispanic and include a high percentage of rural residents.

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