My big, Italian family revolved around my grandmother: a feisty daughter of immigrants fighting for the American dream in Queens, New York.
asserted
family → revolve → Queens
No one was a stranger in her home; she cooked, laughed, and welcomed everyone.
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she → cook → everyone
My mother joked that the boys she brought home ended up falling in love with my grandmother, instead.
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she → joke → grandmother
Always bold and unapologetic, Grandma would take us to the movie theater and shout commentary over the dialogue as we muffled our embarrassed laughter.
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we → take → laughter
Then, something changed.
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something → change → ?
In 2006, my once-lively grandmother was diagnosed with vascular dementia.
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grandmother → diagnose → dementia
It was devastating news, but it also finally answered questions we'd been asking for years.
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we → answer → years
The woman who had always been the center of our family was beginning to shrink inward.
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who → begin → family
My mother, her caregiver, did everything she could to preserve Grandma's joyful spirit, but she grew quiet and withdrawn, overwhelmed by the very gatherings she'd once loved.
uncertain
she → do → gatherings
My grandmother lived with dementia for nearly a decade before passing away in October 2016.
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grandmother → live → October
In 2012, I joined the Alzheimer’s Association, eventually serving as vice president of public policy and fighting for better policies for patients, families and caregivers.
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I → join → patients
Despite my advocacy, I felt powerless to meaningfully change the course of disease for patients in my grandmother’s generation.
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I → feel → generation
What they needed was more research into Alzheimer’s and related dementias that yielded better care options.
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that → need → options
At the time, research into diagnostics and disease-modifying treatments was tremendously weak.
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research → modify → diagnostics
Experts from institutions like Northwestern and the University of Florida clamored for increased funding for Alzheimer’s research, while I traveled with patient advocates to Tallahassee and Washington, D.C., to garner support for desperately needed investment and better policy.
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I → clamor → investment
We knew it was too late for many, but hoped the next generation would have better options.
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generation → know → options
We now have the first treatments shown to slow cognitive decline in the early stages of Alzheimer's disease.
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We → have → disease
For years, our challenge was advancing the science.
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challenge → advance → science
Now, our challenge is ensuring patients can access these advances.
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patients → ensure → advances
Amazingly, advocacy from all corners of the country led to greater investment in research, and the past decade has yielded innovations that are transforming what is possible for people facing Alzheimer’s today.
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what → lead → Alzheimer
New blood tests can identify the biological signs of Alzheimer's years before dementia becomes obvious, making earlier diagnosis possible.
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diagnosis → identify → Alzheimer
Emerging research is showing that simple lifestyle interventions can help support cognitive health as we age, especially when instituted early.
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we → emerge → health
We now have the first treatments shown to slow cognitive decline in the early stages of Alzheimer's disease.
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We → have → disease
And promising next-generation clinical trials are exploring whether treating the disease even earlier—before significant symptoms develop—could delay or prevent cognitive decline.
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symptoms → explore → decline
For years, our challenge was advancing the science.
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challenge → advance → science
Now, our challenge is ensuring patients can access these advances.
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patients → ensure → advances
That is the challenge I’m now focused on addressing.
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I → focus → ?
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.
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I → lead → seniors
And now, as chair of the federal Advisory Council on Alzheimer’s Research, Care and Services, I have overseen the development of practical policy recommendations on how our country can close that gap, continuing to accelerate innovation while ensuring advances make their way to the patients who need them.
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who → oversee → them
Some of our most urgent recommendations focus on helping patients get diagnosed earlier.
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patients → focus → recommendations
As it stands, Americans wait an average of three and a half years for a dementia diagnosis.
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Americans → stand → diagnosis
By then, significant cognitive decline may have already occurred, limiting patients’ ability to benefit from interventions and treatment.
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decline → occur → interventions
With better tools now available, it is time to modernize how we detect cognitive decline.
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we → modernize → decline
Medicare should require standardized, validated cognitive assessment tools during initial and annual wellness visits, so every older American receives a consistent evaluation to catch decline early.
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American → require → decline
Today, cognitive assessments vary widely across practices, allowing early signs of dementia, including Alzheimer's, to slip through the cracks during the window when intervention can make the greatest difference.
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intervention → vary → difference
Congress should also pass the ASAP Act without delay, which would allow Medicare to cover U.S. Food and Drug Administration-approved Alzheimer's diagnostic tests for eligible patients, helping ensure quick access to tests that can help confirm a diagnosis while time is still on their side.
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time → pass → side
For the millions of families who have watched someone they love disappear to Alzheimer's or another dementia, these policies are more than abstract proposals.
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policies → watch → proposals
They create the possibility of more meaningful time for patients like my grandmother, who deserved more options than science could offer her.
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science → create → her
Now, our policies must catch up.
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policies → catch → ?
The Aporia
