New tracker finds 5.4M likely dementia cases
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More than 5.4 million Medicare recipients likely have Alzheimer's or another type of dementia, according to researchers developing a first-ever national surveillance system for tracking the dreaded neurological conditions.
Why it matters: The lack of a widely accepted monitoring tool has made it hard to get a fix on the prevalence of dementia and to direct spending on care, even as science makes it easier to clinically diagnose symptoms and slow cognitive decline.
- The new model incorporates about 40 different criteria to verify cases by symptoms like vascular dementia or if a person is using certain Alzheimer's drugs.
The big picture: Cases of dementia — a general term for loss of cognitive abilities — are expected to triple worldwide by 2050 as the population ages. Alzheimer's, the most common type of dementia, cost the U.S. economy an estimated $321 billion in 2022.
State of play: A prevalence model and data hub launched Tuesday are the first step to creating a type of disease census, said Kan Gianattasio, a research scientist at NORC at the University of Chicago and who helped lead the project.
- It shows about 9% of Medicare beneficiaries have evidence of at least likely Alzheimer's or a related dementia.
- "Both patients and family members need a lot of resources to really navigate this disease," Gianattasio told Axios. "A really good surveillance system that's comprehensive [and] national is really important for these public health efforts, and at least until now it hasn't really existed."
- Surveillance data can also identify disparities in dementia diagnosis and care quality so policymakers can find solutions, she added.
- NORC and the George Washington University's Milken Institute School of Public Health collaborated on the federally funded effort, which was outlined Tuesday in JAMA Network Open. The researchers hope to update the tracker annually.
Zoom out: Dementia is notoriously difficult to diagnose. NORC's model divides Medicare diagnostic codes into three tiers based on how certain they are to actually be dementia. It also eliminates codes often used for billing purposes that researchers determined are poor indicators of dementia.
- Limiting tracking to Alzheimer's is a more straightforward exercise. But the other forms of memory loss and cognitive problems pose similar difficulties for patients and the health system, making a comprehensive picture of dementia helpful, said Gianattasio.
- The new model shows that 7.2% of Medicare beneficiaries in 2019 were highly likely to have dementia, while another 1.9% likely had dementia and 4.3% possibly had dementia.
Reality check: "Surveillance in and of itself is not useful unless we can act on what we learn," said Terry Fulmer, president of the John A. Hartford Foundation, which funds projects that improve health care for seniors.
- The new prevalence model and data tracker could help the health care system plan and provide better clinical care if it's validated through future studies, but it won't change the game on its own, she told Axios in an email.
- Fulmer added that higher Medicare reimbursements are needed to really improve the care dementia patients receive. An eight-year payment experiment launched by the Centers for Medicare and Medicaid Services in July is one example of how that could look, she said.
