With an aging population and life expectancies on the rise, the number of people with dementia in the U.S. is projected to reach nearly 12 million in 20 years. However, many people with dementia don’t get diagnosed; and when it is, the type of dementia is often not specified. A new study using Medicare claims data looks at the patterns of diagnosis by specialist and non-specialists and by patient race/ethnicity over 5 years.
Researchers used a random sampling of 20% of Medicare beneficiaries age 67 or older. These individuals had been enrolled in fee-for-service Medicare for at least 2 years and had no prior dementia diagnosis. Ethnicity was specified as either Asian, black, Hispanic or white. From this group, a sample of 226,604 people received a dementia diagnosis in the next 2 years. Researchers studied their medical claims data for up to 5 years or until they died.
Over the study period, the annual rate of people newly diagnosed with dementia was 3.73%. Diagnosis was more common for women (4.10%) than for men (3.23%), and for blacks (4.55%) and Hispanics (3.77%) than for Asians (3.19%) and whites (3.68%).
Nearly 85% of dementia diagnoses made in the first 2 years were made by physicians who were not dementia specialists; internal medicine and family practitioners made almost 65% of those diagnoses. Other non-dementia specialists diagnosing dementia included pathologists, surgeons, radiologists and emergency medicine physicians, and small numbers of nurse practitioners and clinical psychologists.
By comparison, dementia specialists made 15.4% of the dementia diagnosis in the same timeframe. Specialists in psychiatry and neurology made the vast number of dementia diagnoses; geriatricians made less than 10% of the specialist dementia diagnoses.
Over the course of 5 years, only 36.2% of those diagnosed ever saw a dementia specialist. Hispanics (20.8%) and Asians (18.9%) were less likely to have a postdiagnosis dementia health care visit with a dementia specialist than were blacks (22.9%) and whites (22.4%).
A year after dementia diagnosis, over one-third of subjects had no follow up visits for their condition. After 5 years, 20% still had not had follow-up care specifically for dementia. Hispanics and Asians tended to have less follow up care than blacks and whites, both at 1 and 5 years. The same was true for men compared to women.
Diagnostic code usage varied between clinician type. In the first year of diagnosis, non-specialists used the coding for unspecified dementia 33% of the time, compared to only 22% by dementia specialists. By the end of 5 years, the use of unspecific dementia was reduced to 23% by non-specialists compared to 16% by specialists.
Differences were seen in the diagnosis of Alzheimer’s disease, with specialists diagnosing Alzheimer’s more over 5 years (nearly 50%) that non-specialists (40.7%). The use of non-Alzheimer’s dementia coding remained relatively stable over 5 years. The estimate of Alzheimer’s disease in 50% of patients with dementia from community-based autopsy studies is in line with this study.
This study demonstrates that general practitioners provided most initial dementia diagnoses in the US. Only 22% of patients receive care from a dementia specialist within the first year, rising to 36% within 5 years of initial diagnosis. Hispanic and Asians are less likely to have a visit with a dementia specialist than are blacks and whites.
These results point to gaps and opportunities relating to access, misdiagnosis, and coordination of care. The prevalence of non-dementia specialists in the care of dementia patients emphasizes the need for more education, training and support for these health care providers.