I Almost Didn’t Build It: The Personal Story Behind Building Dementia Without Borders
I Almost Didn’t Build It
The hardest part wasn’t creating The Dementia Assistant®. It was believing I was allowed to.
People often ask me where the idea came from.
They expect me to tell them it started with a business plan, a gap in the market, or some clever AI breakthrough.
It didn’t.
It started with people.
Real people.
People living with dementia.
Families sitting in tears because they didn’t know what to do next.
Carers finishing a 14-hour shift wondering if they’d done enough.
Professionals carrying the weight of impossible decisions long after they went home.
And somewhere along the way, I realised something.
The biggest problem wasn’t a lack of compassion.
It was a lack of support.
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For years, I convinced myself someone else would build the solution.
Someone bigger.
Someone smarter.
Someone with more money.
Someone with more letters after their name.
Surely a university would build it.
Surely the NHS would build it.
Surely one of the huge technology companies would build it.
So I waited.
Nothing happened.
Eventually I stopped asking myself,
“Why hasn’t somebody built this?”
I started asking a much scarier question.
“What if nobody else is going to?”
That question changed everything.
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I’m not a software engineer.
I’m not backed by millions of pounds.
I don’t have an army of investors.
I’m just someone who has spent years caring for people living with dementia, seeing the same problems over and over again, and becoming increasingly frustrated that the very people doing the caring were often the least supported.
I couldn’t ignore it anymore.
So I started building.
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I honestly believed creating the technology would be the hardest part.
I couldn’t have been more wrong.
The real challenge has been everything around it.
Learning what it truly means to build something people can trust.
Understanding UK GDPR.
Understanding HIPAA in the United States.
Learning how different countries approach safeguarding, consent, capacity, health records and privacy.
Understanding security.
Governance.
Compliance.
Accessibility.
Policies.
Procedures.
Things I never imagined I’d spend years studying.
Because I realised something else.
If dementia doesn’t recognise borders…
Then neither should support.
That became the vision.
Dementia Without Borders.
Not simply translating an app into different languages.
Not assuming one country’s way of caring fits another.
But creating something that respects each country’s laws, culture, healthcare system and way of supporting families.
That changes everything.
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I’ll be honest.
There have been days when it’s felt completely soul-destroying.
Reading hundreds of pages of legislation.
Working through policy after policy.
Writing procedures.
Reviewing governance documents.
Completing security audits.
Learning standards I didn’t even know existed a few years ago.
Some days it feels like you’re climbing a mountain…
Only to discover there’s another one waiting at the top.
I’ve questioned myself countless times.
“Am I good enough?”
“Can I really do this?”
“Wouldn’t it be easier to make it simpler?”
Maybe.
But easier has never been the goal.
Doing it properly has.
Because when someone trusts you with information about a person living with dementia, they deserve more than good intentions.
They deserve honesty.
Transparency.
Privacy.
Security.
And the confidence that you’ve done everything you reasonably can to protect them.
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Building The Dementia Assistant® has been one of the hardest things I’ve ever done.
There have been days I’ve questioned everything.
Days where I wondered if I was completely out of my depth.
Days where I looked at the mountain still left to climb and thought,
“Maybe everyone else is right.
Maybe this is too big.”
Then another message arrives.
A daughter saying,
“I wish I’d had this when Mum was diagnosed.”
A carer saying,
“This would have saved me hours.”
A professional saying,
“Finally… someone understands what life is actually like.”
Those moments remind me why I started.
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People see the platform.
They don’t see the thousands of hours behind it.
The weekends.
The missed evenings.
The failures.
The rewrites.
The mistakes.
The learning.
The endless testing.
Or the nights spent reading legislation instead of building features.
Innovation isn’t exciting every day.
Sometimes it’s just quietly doing the work nobody else ever sees.
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I’m not trying to build another app.
I’m trying to build something I wish every family had the moment dementia entered their lives.
Something that sits beside them at three o’clock in the morning when nobody else is awake.
Something that helps carers feel less alone.
Something that gives professionals more time with people and less time fighting paperwork.
Something built around the person.
Not the diagnosis.
Something trusted.
Something responsible.
Something that can support families whether they’re in England, Australia, Canada, India, Japan, the United States—or anywhere else in the world.
That’s what Dementia Without Borders means to me.
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People sometimes ask why progress appears slow.
The answer is simple.
Because trust takes time.
Safety takes time.
Compliance takes time.
Understanding different countries takes time.
Building policies takes time.
Building procedures takes time.
Getting it right takes time.
And it should.
Healthcare deserves nothing less.
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Do I know whether The Dementia Assistant® will become everything I hope it will?
No.
Nobody can know that.
Do I get tired?
Absolutely.
Do I get frustrated?
More often than I’d like to admit.
Do I sometimes wonder whether I’ve taken on something far bigger than myself?
Every single week.
But deep down…
Beneath every late night…
Every policy…
Every procedure…
Every compliance review…
Every security audit…
Every setback…
I know it’s worth it.
Because somewhere, perhaps years from now, a husband caring for his wife at two o’clock in the morning, a daughter desperately searching for reassurance, or a care professional facing an impossible decision might open The Dementia Assistant® and feel just a little less alone.
If everything I’ve learnt about GDPR, HIPAA, safeguarding, governance and responsible innovation helps protect even one family…
Then every difficult day has been worth it.
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If I hadn’t started…
I would have regretted it for the rest of my life.
Failure doesn’t frighten me nearly as much as wondering what might have happened if I’d never tried.
So if you’re standing on the edge of something you’ve been putting off…
A business.
A new career.
A difficult conversation.
A dream that’s been sitting quietly in the back of your mind.
Remember this.
The fear doesn’t disappear before you begin.
You begin anyway.
And sometimes…
That’s the bravest decision you’ll ever make.
Because sometimes the person you’ve been waiting for…
Is you.
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Louise Donaghy
Founder, The Dementia Assistant®
Building Dementia Without Borders.