Grandma's Vascular Dementia: From Queens Queen to Quiet Withdrawal

I grew up in an Italian household centered entirely on my grandmother. She was a feisty daughter of immigrants chasing the American dream in Queens, New York. Her home knew no strangers. She cooked, laughed, and welcomed everyone with open arms. My mother joked that the boys she brought home fell in love with my grandmother instead of each other. Grandma remained bold and unapologetic throughout her life. She took us to movie theaters and shouted commentary over the dialogue while we muffled our embarrassed laughter.

Then everything changed. In 2006, diagnosis came for my once-lively grandmother: vascular dementia. The news was devastating, yet it finally answered questions we had asked for years. The woman who had always been the center of our family began to shrink inward. My mother served as her caregiver and did everything she could to preserve Grandma's joyful spirit. She grew quiet and withdrawn, overwhelmed by the very gatherings she once loved. My grandmother lived with dementia for nearly a decade before passing away in October 2016.

Watching her decline pulled me into the fight against Alzheimer's disease. This is the most common form of dementia and was the only leading cause of death without a treatment option back then. In 2012, I joined the Alzheimer's Association. I eventually served as vice president of public policy fighting for better policies for patients, families, and caregivers. Despite my advocacy, I felt powerless to meaningfully change the course of disease for patients in my grandmother's generation. They needed more research into Alzheimer's and related dementias that yielded better care options.

Research into diagnostics and disease-modifying treatments was tremendously weak at that time. Experts from institutions like Northwestern and the University of Florida clamored for increased funding. I traveled with patient advocates to Tallahassee and Washington, D.C., to garner support for desperately needed investment and better policy. We knew it was too late for many yet hoped the next generation would have better options.

Today we have the first treatments shown to slow cognitive decline in the early stages of Alzheimer's disease. For years our challenge was advancing the science. Now our challenge is ensuring patients can access these advances. Amazingly, advocacy from all corners of the country led to greater investment in research. The past decade has yielded innovations transforming what is possible for people facing Alzheimer's today.

New blood tests can identify the biological signs of Alzheimer's years before dementia becomes obvious. This makes earlier diagnosis possible. Emerging research shows simple lifestyle interventions help support cognitive health as we age, especially when instituted early. Promising next-generation clinical trials are exploring whether treating the disease even earlier could delay or prevent cognitive decline. We seek to treat before significant symptoms develop. These breakthroughs are transformative.

Newt Gingrich stated that Alzheimer's is waging a war on millions. Congress could help us win it. Today, as Florida's Secretary of Elder Affairs, I lead efforts to serve older Floridians and their caregivers in a state with one of the nation's largest populations of seniors. The urgency cannot be overstated. Communities face real risks if access remains limited. We must act now to ensure no family has to lose another mother to this preventable tragedy.

As chair of the federal Advisory Council on Alzheimer's Research, Care, and Services, I have guided the creation of practical policy steps to close the widening gap for patients. We need to speed up innovation while making sure new treatments actually reach the people who need them most right now.

Our most pressing recommendations focus on getting patients diagnosed sooner than they are today. Right now, Americans wait an average of three and a half years before receiving a dementia diagnosis. By that point, significant cognitive decline has often already set in, cutting short the window where interventions can truly help.

With better tools available, we must modernize how we spot early signs of mental slipping. Medicare should mandate standardized, validated cognitive assessment tools during initial and annual wellness visits. This ensures every older American gets a consistent check to catch decline before it becomes too late.

Currently, cognitive assessments vary wildly across medical practices. Early signs of dementia, including Alzheimer's, slip through the cracks during the narrow window when treatment can make the biggest difference. We cannot keep letting this happen.

Congress should also pass the ASAP Act without delay. This legislation would allow Medicare to cover FDA-approved Alzheimer's diagnostic tests for eligible patients. That step helps ensure quick access to tests that confirm a diagnosis while time is still on their side.

For the millions of families who have watched someone they love disappear into Alzheimer's or another form of dementia, these policies are more than abstract ideas. They create a chance for more meaningful time for patients like my grandmother, who deserved more options than science could offer her when she was sick.

For the first time in decades, better options exist. Now our policies must catch up.