Dementia Support from Lived Experience
My Story
Where It Really Began
My name is Nzilani.
I didn’t enter dementia care through a classroom.
I entered it through real life.
I met dementia in my very first job in England.
I had applied to work as a care assistant. In the early 2000s, many private care homes didn’t require experience — and I was hired.
About a week later, a senior manager called me in. There was a staffing shortage upstairs, I was told. They needed help.
What I didn’t yet understand was that long-standing staff avoided that floor.
It was the dementia unit.
Some of the people admitted were in advanced stages. Others, I now realise, were in the middle stages — distressed, confused, sometimes challenging at home, but not beyond support.
But at the time, placement often felt like the only option families were given.
Medication was used quickly. Behaviour was contained rather than understood.
There was a heaviness to that floor. Even as a young care assistant working my eight-hour shift, I could feel it.
And I knew I got to leave at the end of the day.
They didn’t.
I knew nothing about dementia then. What I saw first was not the beginning of the condition — it was the crisis point.
But something unexpected happened.
My curiosity found a breeding ground.
Instead of stepping back, I leaned in. I stopped seeing people as tasks and began seeing human beings trying to make sense of a world that no longer behaved as expected.
That quietly changed the direction of my life.
What the Years Taught Me
Over time, I worked in council services in Lancashire, with different agencies throughout the UK and outside the UK. I began to see dementia at different stages — the early signs, the middle changes, the slow unfolding.
For the past seven years, I’ve worked mainly as a Dementia live-in companion.
Living under one roof gives you something rare: time.
Time to observe.
Time to listen.
Time to understand what truly helps — and what makes things worse.
Those years taught me more than any manual ever could.
Dementia isn’t just about memory loss.
It’s about identity.
Emotion.
Communication.
And the quiet strain it places on families.
What families usually need isn’t another checklist.
They need clarity.
They need reassurance.
They need someone who understands the messy, human reality of caregiving.
What I Do Now
Today, I support families living with dementia at home — particularly in the early and confusing stages. Many people come to me when something feels “not quite right”: before a diagnosis during the long waiting period or when dementia starts to show itself more clearly at home
I help caregivers understand what they’re seeing, make sense of behaviours, and respond in ways that reduce stress for both them and their loved one. My work is grounded in ongoing hands-on care, alongside coaching families online and in person.
I offer:
- Family coaching for clarity, confidence, and communication
- Short-term, in-person respite support so caregivers can breathe
- Digital tools and free checklists for everyday dementia life
- Stories and videos that help people feel less alone
My Approach
My work is rooted in clarity, dignity, and emotional intelligence.
Every behaviour is communication.
Both people — the person living with dementia and the caregiver — are under pressure.
I don’t overwhelm families with jargon or theory.
I offer calm, honest guidance that helps you understand what’s happening beneath the confusion, repetition, or resistance — and how small changes at home can make a meaningful difference.
Every family is different.
So I meet you where you are — with empathy, straight talk, and deep respect for everyone involved.
If you’re unsure where to start, start here. A simple conversation can bring clarity.
