I call it The GAP.
When you’re handed an Early-Onset Alzheimer’s diagnosis, you’d think the medical world would rally like a pit crew at the Indy 500 — fast, coordinated, everyone knowing their lane.
Instead, what you get looks more like the DMV on a Friday afternoon. Long waits. Conflicting directions. Nobody talking to each other.
It’s not a system. It’s a canyon — wide, jagged, and deeply fragmented. And unless you’ve tried to navigate it with someone you love, you’d never know how easy it is to fall through.
When the System Hands You Pamphlets
When Tim was diagnosed by Generations of Manchester, NH, we expected support.
What we got was a stack of glossy pamphlets about “preparing for decline.”
No roadmap. No coordination. No mention of treatments, trials, or lifestyle interventions that could slow the disease.
It was essentially a death sentence in brochure form.
And while families like ours are left with nothing but paper, the Alzheimer’s Association has raised hundreds of millions. Their answer when we asked for help to develop MiM? “There’s no money.”
No money? Then what are all those millions for? Purple balloon galas? Branded walks? Because they’re clearly not making their way into the hands of families who need them most.
That’s not care. That’s abandonment. And it’s happening every day.
The Specialists Shuffle
You’ve got the neurologist who orders tests but doesn’t address daily living.
The primary care doc who shrugs because “this is out of my lane.”
The psychiatrist who treats symptoms in isolation.
And the insurance company who’d rather wrestle a porcupine than approve a PET scan.
None of them are coordinated. It’s whack-a-mole medicine, and the mole is you.
The Doors Inside the Canyon
The cruel part? Families do find “doors” inside this canyon. But most are locked, mislabeled, or slam shut just as you reach them.
The Insurance Door
Under 65? Too young for Medicare. You fight private insurance for every test and trial.
Over 65? Medicare exists, but it’s only half-open — some scans, some drugs, endless denials.
The Clinical Trials Door
Younger patients? Too rare. Older patients? Too late. Tim is 74. At 75, some studies won’t even let him in.
The Care Ecosystem Door
Too young? “Sorry, you’re not a senior yet.”
Old enough? “Sure, we have programs — but they’re built for later-stage decline, not for someone who still writes, golfs, and lives with rhythm.”
It’s the sick joke of Alzheimer’s care:
👉 Too young for the rocking chair. Too old for the cutting edge.
The Cost of Fragmentation
This canyon doesn’t just waste time — it costs families years of clarity they could have had.
They bounce between specialists like ping-pong balls, burning through savings, patience, and hope.
Meanwhile, innovation exists — AI, digital health, even blockchain for transparency. But the ecosystem is too fractured to scale it. So families are left standing at the edge, watching doors slam shut, with nowhere to turn.
Why MiM Exists
That’s why we built Memory in Motion (MiM).
Not another app. A side entrance. A lifeline.
MiM doesn’t care if you’re 55 or 75. It’s not about waiting for the “right door” to open. It’s about building a bridge across the canyon — with daily rhythms, reminders, anchors of identity, and connection that restores dignity.
Because until medicine learns to speak with one voice — and until organizations stop hoarding millions while handing out pamphlets — it’s the patients who pay the price for the silence.
A Clarion Call
We can’t wait for perfect systems or polished protocols. We need real support, built with and for the people living this journey now.
That’s what MiM is — and that’s why we’re asking you to add your voice. Whether you’re a Traveler, a Supporter, an Advocate, or an Investor, your registration shows that this work matters.
👉 Register here at livewithmim.org
Because Alzheimer’s shouldn’t mean silence, shame, or waiting.
Honestly, what is more important than this... I love what you are doing, Vanessa.
A thousand thank you’s Summer. Please share to your world. I have the ears of some major players, and still need as many people (with Or without an AD diagnosis) to register on my site https://livewithmim.org to stand a chance of obtaining a grant we are writing.