September is World Alzheimer's Awareness Month. Alzheimer's is the most common kind of dementia, a disorder characterized by the progressive loss of brain cells and, in its final stages, complete dependence—the inability to remember, speak, move, or even eat or swallow unassisted. Many end up in nursing homes. Seven million people are impacted by dementia in the United States today, a number that will more than double in the next 25 years.
But awareness is not just about understanding the magnitude of the problem or content expertise on the choices we make as individuals to mitigate the enormous present and future challenges of this disease. It is about a consciousness of the role of systems, namely insurance and government, that are seriously undermining our ability to care.
In an era when brain health is framed as "brain capital" and the argument for social good in the private sector only holds with a handsome financial return, we are in trouble.
We learned earlier this year through an investigation by The Guardian that UnitedHealth Group covertly incentivized nursing homes to slash hospital transfers through a program of bonuses and internal "budgets" that reduced or rationed admissions and gatekept access to acute care, resulting in medically and ethically unconscionable delays. All the cases in this exposé involved the sudden onset of potentially catastrophic brain symptoms in nursing home residents. Neurological conditions are the costliest diseases of aging, and stroke and dementia are disproportionately represented in institutional care.
I am a neurologist, activist, and support caregiver to several people living with dementia in my family. I was alarmed to learn that, in addition to the tactics described above, UnitedHealth allegedly pressured cognitively impaired nursing home residents to switch to Medicare Advantage (MA), which incentivizes cost-cutting through lump-sum payments. Staff also reported being urged to convince MA members to adopt Do Not Resuscitate (DNR) orders to avoid expensive hospitalizations.
Dialed into the problem of segregated admissions and racialized quality of care disparities in nursing homes through my advocacy—and knowing that 55–70% of Asian, Black, and Latino Medicare beneficiaries enroll in MA versus 43% in non-Hispanic whites (consistent with racialized economic disparities)—it becomes clear how perverse racialized incentives drive perverse racialized outcomes in nursing home care.
Cutting costs by functionally cutting coverage under MA has become a windfall for health insurance companies. UnitedHealth has dominated this landscape. MA has funneled public dollars into privatized healthcare and continues to grow since its inception as "Medicare+Choice" in 1997, with 6% market share then and 54% today.
The explosion of privatized plans—paired with little government oversight—has corrupted health outcomes in nursing homes. This compounds with the almost certain loss of home and community-based services through a nearly $1T Medicaid cut in 2025. And tragically, if we do nothing, it is people living with dementia and our families who will shoulder the greatest financial costs, approximately $500k USD over the often decades-long course of the illness, with a corresponding (and incalculable) burden on our emotional, social, and physical health and well-being.
This may seem like a David and Goliath scenario, but ordinary people can take action.
- Reframe the issue: Decommodify healthcare. We have the right to be healthy. While there are financial liabilities for violating this principle, the market will not fix this.
- Share your story of denied care publicly and with regulators (e.g., ProPublica, CMS).
- Pressure lawmakers to increase oversight, end lump sum payments, and support traditional Medicare.
- Vote for those who oppose Medicare privatization.
- Demand divestment from insurance giants like UnitedHealth by employers or pensions.
- Educate others about Medicare Advantage’s hidden costs and care restrictions.
- Support local alternatives to institutional care, such as adult day centers, home care programs, and caregiver support.
