The Missing Middle: Creating Memory in Motion for Early Cognitive Support

The Missing Middle
Why I Created Memory in Motion — and What It's Taken to Get This Far

By Vanessa | Founder, Memory in Motion (MiM)

We spend billions researching Alzheimer's disease. We develop increasingly sophisticated diagnostic tools, investigate treatments, and devote considerable resources to understanding what happens as the disease progresses.

But there's a question I rarely hear asked.

What happens to the person who has just received a diagnosis but still has a life to live?

Not the person they may become five or ten years from now. The person sitting across the breakfast table this morning.

The one who still laughs at terrible jokes, enjoys familiar routines, makes decisions, has opinions, and occasionally drives their spouse absolutely mad.

Where is the practical, everyday support to help that person continue living as independently and confidently as possible?

That question has occupied much of the past two years of my life.

And it began with my husband, Tim.

The Ozzy Syndrome

Before anyone receives a diagnosis, there's often a period of uncertainty. Small changes in memory or behavior. Forgotten details. Moments that are easily explained away until, collectively, they become harder to ignore.

Sometimes the person most reluctant to investigate isn't the one experiencing those changes.

It's the person who loves them.

The spouse or partner who notices something is different but fears that obtaining a diagnosis will somehow make their worst nightmare real.

I call this the Ozzy Syndrome, after the familiar image of an ostrich burying its head in the sand to avoid danger.

Real ostriches don't actually do that. Humans, however, have elevated avoidance to something approaching an art form.

If we don't have it confirmed, perhaps it isn't really happening.

It's an understandable response. A diagnosis threatens more than someone's health. It can threaten the future two people imagined together.

But uncertainty offers no protection. Avoiding an assessment can mean missing treatable explanations for cognitive changes, delaying access to support, and losing valuable opportunities to make informed decisions together.

And even when families overcome that fear and seek answers, what awaits them isn't necessarily what they expect.

The Long Road to a Diagnosis

When Tim began experiencing cognitive difficulties, we did what families are encouraged to do. We sought professional help.

But getting that help was anything but straightforward.

Our move from New York to New Hampshire meant missing an appointment we had already arranged. Once settled, we needed to find a new primary care physician, who then referred Tim to a nearby specialist.

By the time we finally saw that specialist, more than a year had passed.

And the waiting wasn't over.

It took two specialist appointments, separated by several months, before we were told unequivocally that Tim had Alzheimer's disease.

During those visits, Tim completed two written Montreal Cognitive Assessment (MoCA) tests.

His family history also appeared to weigh heavily in the conclusion.

At the time, I didn't know that a MoCA test could screen for cognitive impairment without establishing its underlying cause. I knew nothing about Alzheimer's biomarker PET scans or blood tests. Neither was offered or discussed with us.

We had spent well over a year trying to obtain answers. And when the diagnosis finally came, I didn't yet understand how much I still needed to ask.

I certainly wasn't prepared for the conversation that followed.

Preparing for the Worst

A social worker advised me to install alarms throughout our home. Not to keep burglars out, but to keep Tim in.

I was told to sell his car and made to promise that I would notify the police because he was now considered a potential Silver Alert risk.

I was also told that Tim should no longer walk our dogs, for fear that one day he might not be able to find his way home.

Even an ordinary daily routine had become a potential danger to be eliminated.

Then there was the question of leaving him alone.

I was told that Tim could not be left alone long enough for me to take a vacation.

I had planned a trip to Aruba with the girls, but following that advice, I cancelled it.

And the very doctor who had diagnosed Tim with Alzheimer's disease wrote a letter to the airline explaining why I had to cancel my trip.

This wasn't simply advice about what might happen someday. The diagnosis was already changing our lives and limiting what we believed we could safely do.

Then came the financial warnings.

We should begin thinking about nursing homes and the considerable expense of long-term care. Medicaid, as it was explained to me, could involve serious consequences for our assets. I came away believing that a facility might take half of what we owned, leaving me to live on the remainder.

We should also start putting our names on residential care waiting lists.

Imagine absorbing all this after waiting so long for an explanation of what was happening to someone you love.

Alarms. No car. No dog walks. No vacation. Police alerts. Nursing homes. Financial upheaval.

A future presented almost entirely through the lens of everything that might go wrong.

I understand the importance of planning. Safety matters. So does financial preparation, although Medicaid rules are considerably more complicated than the explanation I understood that day.

But something was conspicuously absent from those conversations.

Nobody told me what we could do to help Tim remain Tim for as long as possible.

Where was the guidance about maintaining his abilities, confidence, routines, relationships, and sense of purpose?

We had waited so long for answers. What I received felt less like a plan for living and more like instructions for preparing for the worst.

Who Questions a Diagnosis?

I left devastated. Then I began researching.

I learned about diagnostic methods, cognitive assessments, and the importance of understanding the evidence behind a diagnosis. I discovered that additional testing existed, including investigations that had never been discussed with us.

The more I learned, the more questions I had.

We left that facility and sought further evaluation, including additional testing.

Approximately six months later, the original facility called to ask why we hadn't returned.

I explained my concerns and questioned the information underlying Tim's diagnosis.

The nurse slammed the phone down.

That encounter left me with a question that has stayed with me ever since.

Who questions a diagnosis?

Who has the knowledge, confidence, resources, or emotional strength to challenge medical authority at the very moment their world appears to be falling apart?

And who even knows what questions to ask?

I am not suggesting that every Alzheimer's diagnosis requires a PET scan or biomarker blood test. A clinical diagnosis can be appropriate without them. Nor am I suggesting that genuine safety concerns should be ignored.

What I am questioning is the way families can be left without a clear understanding of the evidence, the uncertainties, or the options available to them.

A diagnosis should open the door to informed discussion, not close it.

The Missing Middle

As I began looking for ways to support Tim, I discovered another problem.

There were medical resources, caregiver organizations, support groups, and extensive information about Alzheimer's disease. Much of it valuable.

But I struggled to find anything that offered the kind of practical, personalized, continuous support we needed in everyday life.

Not another explanation of what might happen eventually.

Help with what was happening now.

How could we maintain familiar routines? Make everyday tasks easier? Support memory without constantly drawing attention to what had been forgotten? Preserve confidence and independence without compromising safety?

And how could I support Tim without turning our marriage into a permanent patient-caregiver relationship?

I wasn't looking for a miracle or a promise to stop the disease.

I wanted something far more immediate.

I didn't want to spend the years we still had preparing exclusively for the years we might lose.

That was the beginning of Memory in Motion.

Hope in a Bottle

There is another side to the missing middle that troubles me enormously.

Fear creates a market. And few fears are more powerful than the prospect of losing your memory—or watching someone you love gradually lose theirs.

When people are frightened, they search for answers. They read articles, follow research, ask questions, and sometimes spend money they can scarcely afford on anything that offers a glimmer of hope.

And there is no shortage of products waiting for them.

Memory supplements. Mushroom extracts. Lion's mane. Ginkgo biloba. Turmeric compounds. Specially formulated vitamins. Products advertised with scientific-sounding explanations and reassuring promises about brain health.

Some of these substances are legitimate subjects of scientific investigation. That does not mean their advertised benefits have been established, or that they can prevent, treat, or reverse Alzheimer's disease.

Consider Prevagen, a widely advertised memory supplement whose makers faced a lengthy legal challenge over claims about its effectiveness. Federal regulators challenged the evidence supporting its advertised memory benefits, and a court ordered restrictions on certain claims.

That is not a minor distinction.

When a product's advertising sounds convincing, how many consumers investigate the quality of the clinical evidence behind it?

How many know the difference between a laboratory experiment, a small preliminary human study, and a well-designed clinical trial demonstrating a meaningful benefit?

And how many simply want so desperately for something to work that they're willing to take the chance?

I understand that impulse.

I call it Hope in a Bottle.

Not because hope is foolish. Quite the opposite. Hope is essential when you're facing an uncertain future.

But hope should not be confused with evidence.

What troubles me is a marketplace in which vulnerable people can be persuaded to spend substantial sums on products whose promises go well beyond what credible research supports.

And the consequences aren't necessarily limited to wasted money. Unproven remedies may distract families from obtaining appropriate medical assessment, treatment, and practical support.

I want MiM to help people navigate that confusion, too.

Not by telling them what to believe or dismissing promising research, but by encouraging better questions, trustworthy information, and a clearer understanding of what is known, what remains uncertain, and what simply hasn't been demonstrated.

Because people facing cognitive changes deserve hope.

They also deserve to know when someone is trying to sell it to them.

An App Born of Necessity

Memory in Motion, or MiM, is an app I'm developing for people experiencing early cognitive changes and those who love and support them.

The intention is straightforward: to make everyday life easier through practical, personalized assistance that respects the person's abilities, preferences, and independence.

And it must be simple.

Many older adults are perfectly comfortable with technology. Others want absolutely nothing to do with it. Some people experiencing cognitive changes may find unfamiliar interfaces particularly challenging.

The last thing they need is an app that requires an instruction manual, three passwords, and a technologically gifted grandchild on permanent standby.

MiM isn't about asking people to adapt to technology. It's about making technology adapt to people.

It is not intended to diagnose or treat Alzheimer's disease, replace professional care, or promise to slow cognitive decline.

Its purpose is to offer practical support for living with changes, rather than focusing exclusively on their consequences.

Of course, having an idea and bringing it into the world are two rather different undertakings.

Two Years of Unexpected Obstacles

I am not a software developer by profession.

Nevertheless, I began learning, experimenting, building, and rebuilding MiM, taking its development as far as I could myself.

What I hadn't anticipated was how much of the work would have nothing to do with developing an app.

First came establishing the business.

I incorporated CID Battle LLC, doing business as (dba) Memory in Motion (MiM).

Then came the USPTO (United States Patent and Trademark Office,) with its applications, procedures, and the bewildering process of navigating intellectual property requirements.

MiM now has a patent application pending.

A Little Help from the Right People

Of course, there came a point when I had to acknowledge that I couldn't do everything myself. MiM needed a professional software developer.

The problem was finding the money to pay one.

Have you seen what experienced software developers charge by the hour? They can give attorneys a run for their money, and by this stage I'd already become painfully familiar with those bills.

That's when my daughter, Natalie, came to the rescue.

She introduced me to Josh, a software developer who understood what I was trying to accomplish and generously agreed to help bring MiM to the public pro bono—without charging me for his work.

I hope that, as MiM develops and becomes financially sustainable, Josh will share in the rewards of helping make it possible. His contribution deserves more than a passing thank-you.

And something else happened.

Josh saw another potential use for MiM that I hadn't originally considered.

He wasn't the first. My local attorney had identified another possible application, and so had my scientific advisor, who prefers to stay anonymous, but whose insights have also helped me think more broadly about what MiM might become.

Each of them approached MiM from a different perspective, yet each recognized possibilities beyond the original idea.

That has been enormously encouraging.

I began developing MiM to help Tim and people facing similar challenges. I remain determined to keep that purpose at its heart. But I'm beginning to see that the underlying approach may have applications I hadn't imagined when I started.

There may be more opportunities here than I initially understood.

The challenge now isn't a shortage of ideas. It's finding the resources, expertise, and time to turn those possibilities into something people can actually use.

And thanks to Natalie and Josh, that goal feels a little closer.

And then there was Apple.

To enroll in the Apple Developer Program as an organization, I first needed the incorporated business and a D-U-N-S number so Apple could verify its legal identity.

Only after working through those prerequisites could I complete the enrollment process and become an Apple Developer.

And even then, I discovered that the web-based version I had spent so much time building required further development to become the iOS app I envisioned.

Every time I cleared one hurdle, another appeared. Usually carrying an invoice, or the fact that they saw an elderly person who didn't understand the process. 

The next major step is completing the development needed to bring MiM into Apple's TestFlight environment for user testing, with Android development planned afterward.

And because MiM may involve sensitive personal information, security and privacy cannot be optional extras.

The app must be designed around appropriate safeguards, informed consent, and careful handling of personal data, particularly when some users may be experiencing cognitive difficulties.

That requires specialized expertise and responsible testing.

Neither comes cheaply.

And now I'm back to dealing with attorneys.

Non-disclosure agreements were drafted long ago because protecting MiM and the work invested in developing it has always mattered to me.

I also contracted with an organization for assistance that, unfortunately, never materialized as I had expected.

Now I'm navigating another round of legal advice and documentation to understand what protections MiM needs as development continues.

Intellectual property, contractual obligations, liability, privacy, data protection—the list seems to grow every time I think I've reached the end of it.

And every consultation, document, and legal review brings another expense.

I began this undertaking because I wanted to help my husband. I never imagined how much time and money I would spend simply trying to establish, develop, and protect the app intended to do that.

Keeping MiM True to Its Purpose

There was a time when I actively explored bringing investors into MiM. I knew that outside funding could accelerate development and help get the app into the hands of people who needed it.

I also received an extraordinarily attractive offer from a potential buyer.

I turned it down.

I was advised that I could do better, but the decision was about more than money. I worried that MiM might become another product designed to appeal to the widest possible market, its original purpose gradually diluted in pursuit of growth and profit.

MiM began with Tim. With our experiences, our frustrations, and my determination to find a better way to help people navigate the early stages of cognitive change.

I didn't want to lose sight of that.

I'm not going to pretend that money has never tempted me. Of course it has. When you've invested so much of your savings, and every new obstacle comes with another bill, the prospect of a substantial financial reward is difficult to ignore.

I've felt the pull of greed, too.

And I've tried very hard to avoid it like the plague.

Along the way, I've made new friends and found trusted advisors—people who have generously shared their knowledge, experience, and perspective, often without compensation,  and frequently when I needed them most.

Just as importantly, the encouragement and understanding of my family and friends have helped enormously. They've listened to my ideas, tolerated my frustrations, celebrated the small victories, and understood why something that began as a personal mission has consumed so much of my time, energy, and resources.

I don't think I could have come this far without them.

I know MiM needs to be financially sustainable. Without funding, development cannot continue, and without a finished app, the people I want to help cannot benefit from it.

But sustainability and maximizing profit are not the same thing.

I want MiM to succeed. I want it to reach people. I want it to grow.

What I don't want is for success to change what MiM was created to do.

And so, despite the offers, the advice, the setbacks, and the considerable expense, MiM remains a work in progress.

It isn't easy trying to introduce something new into an established system.

But I'm determined that if MiM finally makes it into people's hands, it will still be the app I set out to create for Tim.

And Then I Thought I'd Write a Book

Somewhere in the middle of all this, I had what seemed like a rather sensible idea.

Perhaps I could write a book.

Fiction, I reasoned, might help people understand the human consequences of cognitive decline and the shortcomings of systems that sometimes become so preoccupied with diagnoses, procedures, and future risks that they overlook the individual.

I began working on The First Record, hoping the story might reach people who would never read a medical research paper.

And perhaps, rather optimistically, sales might help finance MiM.

Write a book. Raise awareness. Sell some copies. Help fund the app.

What could possibly go wrong?

Quite a lot, apparently.

It turns out that writing, publishing, and successfully marketing a book are entirely different disciplines, each with its own challenges and expenses.

Who knew?

I've also been fortunate to receive guidance from an accomplished scientist whose expertise has helped me think more critically about some of the scientific questions surrounding this work.

That perspective matters. Personal experience may inspire an idea, but credible evidence, thoughtful design, and responsible development must shape what it eventually becomes.

The Cost of Continuing

Two years into this undertaking, I've invested a substantial portion of my savings in trying to make MiM a reality.

So much, in fact, that after years of retirement, I've returned to work as a real estate broker to help finance its development.

And as anyone in real estate knows, returning to the business involves spending money long before there's any guarantee of earning it.

I'm now in my seventies.

I had rather different ideas about what this chapter of my life would look like.

I certainly hadn't imagined spending it navigating software development, patent applications, corporate paperwork, attorneys, app-store requirements, and the extraordinary expense of trying to turn a deeply personal idea into something useful.

Nor had I expected to return to work after retiring.

Life hasn't quite panned out the way I anticipated.

But then, I suspect it rarely does.

There have been moments of exhaustion, frustration, and genuine uncertainty about whether I can continue financing this undertaking.

And somewhere along the way, I've discovered that being in my seventies doesn't necessarily mean I'm finished taking on new challenges.

Apparently, it just means I should have read the small print before embarking on this particular one.

The Life Still Being Lived

I often wonder where we would be today if I had heeded all those cautions I received from that well-meaning Social Worker two years ago.

I understand that safety concerns can be real and that abilities may change. I don't dismiss the importance of assessing risks as circumstances evolve.

But I also wonder what might have happened if we'd been given as much guidance about living as we were given about preparing for decline.

I didn't begin this journey because I thought the world needed another app.

I began because I couldn't find the help I wanted for my husband, and I believed there had to be a better way.

Two years later, I'm still working to make that possible—not because the diagnosis changed, but because it did not change everything.

Tim did not cease being Tim the day a doctor said he had Alzheimer's.

He still has his routines, his preferences, his sense of self, and a life to live.

And he's still walking our dogs.