Most dementia patients do not receive diagnosis or care from specialists, a new study has found.

In nearly a quarter of a million people diagnosed with dementia over a five-year period, 85% of individuals received their first diagnosis from a non-specialist physician, usually a primary care doctor. An “unspecified dementia” diagnosis was common, reported researchers from the University of Southern California.

One year after diagnosis, less than a quarter of the patients had seen a dementia specialist. After five years, that number had increased to only 36%.

The biggest problem with this trend is that misdiagnosis can lead to incorrect – and potentially harmful – treatment, wrote co-author Julie Zissimopoulos, Ph.D., director of the Aging and Cognition program at the USC Schaeffer Center for Health Policy & Economics. 

“Dementia specialists are more familiar with subtypes of dementia and may be less likely, for example, to misdiagnose Lewy body dementia as Alzheimer’s disease and wrongly prescribe antipsychotic medications to patients,” Zissimopoulos explained.

“Without identification of dementia type, patients and their families are potentially missing out on important discussions about care and managing this diagnosis with other chronic conditions, as well as information about clinical trials,” she said.

The investigators also found that Hispanic and Asian patients were less likely to have a follow-up visit after diagnosis when compared to white and African-American patients. More study is needed to identify factors driving these differences, such as barriers or differences in seeking care, they wrote.

The trend in unspecialized care is likely to continue due to an ongoing dearth of and access to neurologists, Zissimopoulos added. But market realities such as healthcare costs may mean the solution is not more neurologists, but better trained non-specialists, she suggested.  “If in the future these diagnoses are going to be handled in large part by non-dementia specialists, they may need better training and tools.”

The study was published online September 4, in the journal Alzheimer’s & Dementia.