Every person with Alzheimer’s disease and related dementias has a unique journey of how they discovered their diagnosis. A new study in Alzheimer’s & Dementia examined the patterns that led up to the disease being diagnosed, giving more insight into the avenues people use to pursue care.

Researchers combed data from 3,621 people in whom Alzheimer’s or a related dementia was diagnosed between 2014 and 2019. Data came from healthcare records of people who were treated by the Duke University Health System. All of the people were aged more than 65 years, and the average age was 80. The scientists looked at how the individuals used healthcare services in the two years leading up to receiving their diagnosis. 

The assessment revealed six types of care sequences. Visiting a primary care doctor about one month prior to diagnosis was the case for 45.9% of the people studied. Of those studied, 10.9% went to one other speciality visit within three months of diagnosis, whereas 11.5% had multiple visits to primary care within a half-year period before diagnosis. For 10.7% people, they made highly frequent visits to other specialties throughout the two-year span, whereas 8.9% of participants made periodic monthly visits to primary care and 13% made multiple visits to other specialties within one month of their receiving a diagnosis. 

Most people tended to increase how much healthcare services they used within six months of receiving a diagnosis. Four of the six care sequences showed that people went to their primary care doctors or specialists more before their diagnosis; that was the case for more than 80% of the care patterns. Almost half of the people had one primary care visit before diagnosis. 

Key sociodemographic factors contributed to the variation in the pathways that people sought care, the authors reported. For instance, people who lived in rural areas were more apt to use primary care visits, but that finding may have been because primary care is more accessible than specialty care doctors in such areas.

The team also noted that racial differences in the sequencing of care also were found. Women who were non-Hispanic Black were more likely to seek out multiple primary care or other specialty visits than their non-Hispanic white people. That association wasn’t found among men studied.

“Several distinct patterns of care leading to ADRD diagnoses were identified. Integrated care models are needed to promote early identification of ADRD,” the authors wrote.