The Dementia Sculpture by Julia O’Sullivan: Honouring the Person Beyond the Illness
Updated: Aug 31
Dementia Sculpture by Julia O'Sullivan
The Dementia Sculpture by Julia O’Sullivan explores the fragile relationship between memory, identity and the human spirit. Inspired by her father’s experience with frontal lobe dementia, this deeply personal artwork transforms grief, love and understanding into a powerful visual journey through the changing landscape of the mind.
Through haunting symbolism, including fading identity, black holes of lost memories and a figure trapped within the mind, the sculpture offers an empathetic exploration of dementia—not as the loss of a person, but as a reminder of the individual who remains beyond the illness.
Chapter 2: Coming Home To a Different Dad
Chapter 3: The Holes Left Behind
Chapter 5: My Gift To Dad
Chapter 1 – It Began With My Father
Some artworks begin with an idea.
Others begin because there is something inside you that needs somewhere to go.
The Dementia Head began with my father.
Many years ago, Dad was diagnosed with frontal lobe dementia.
At the time, I was living in New Zealand, thousands of miles away from my family.
That distance became one of the most difficult parts of his illness for me.
I wanted to be there.
I wanted to help.
I wanted to contribute to his care, support my family and somehow make myself useful.
But I couldn't.
I was on the other side of the world watching something happen that I had absolutely no power to stop.
There is a peculiar kind of helplessness in that.
Someone you love is changing and every instinct tells you to do something.
But what?
And from thousands of miles away, what could I do?
Watching From a Distance
Dementia doesn't arrive and simply take a memory away.
With Dad, the changes went much further than that.
His behaviour changed.
The way he communicated changed.
Parts of the man we knew became increasingly difficult to recognise.
And because I was so far away, much of that transformation reached me through conversations from home.
I was hearing about changes rather than always witnessing them for myself.
Trying to understand what was happening from the other side of the world.
Trying to reconcile the father I carried in my memory with the man dementia was changing.
I struggled with that.
There was grief in it.
But there was frustration too.
Guilt.
Helplessness.
And anger at being so far away when part of me desperately wanted to be closer.
I couldn't change the distance.
And I couldn't change what was happening to Dad.
But eventually I realised there was one thing I could do.
I could make something.
Giving the Helplessness Somewhere to Go
Art has always given me somewhere to put things I cannot easily say.
So I began thinking about dementia.
Not simply what it looked like from the outside, but what might be happening within the mind itself.
Where do memories go?
What happens when familiar things become unfamiliar?
What happens to identity when parts of the life that created it become increasingly difficult to reach?
And perhaps the question that troubled me most:
How much of the person is still in there?
I didn't know the answers.
But I could explore the questions.
So I began creating a head.
At that point, I wasn't planning an entire collection.
There was no grand scheme for seven sculptures.
I was simply trying to make sense of something happening to my father and giving my own helplessness a physical form.
But something happened while I was making it.
I realised that a sculpted head could become more than a portrait.
I could work on the outside.
I could work inside it.
I could cut into it.
Build upon it.
Allow things to disappear from it.
I had created a three-dimensional canvas that could explore what might be happening beneath the surface of the human mind.
And that changed everything.
The questions became bigger.
If I could use sculpture to explore the invisible changes taking place within Dad's mind, what other hidden experiences could I explore?
One Head became an idea for another.
And then another.
Eventually there would be seven.
The Disorderly Demise of the Cerebral Cortex had begun.
But I didn't know any of that when I started.
There was no collection.
No seven Heads.
No grand artistic plan.
There was simply a daughter in New Zealand trying to understand what was happening to her father back home.
Everything began with Dad.
Chapter 2 – Coming Home To a Different Dad
One of the strangest things about Dad's dementia was that I didn't witness his decline day by day.
I couldn't.
I was living in New Zealand.
The people around Dad experienced the changes gradually.
A small difference in behaviour.
Then another.
Something he could no longer do.
Something he said that wasn't quite like him.
Another little alteration.
When change happens slowly in front of you, you adapt to it.
You have to.
What seems shocking at first gradually becomes part of everyday life. A new behaviour becomes familiar. Another change follows and, without necessarily realising it, everyone adjusts again.
By the time I came home, my family had been living alongside those changes for months.
I hadn't.
I Saw the Difference
For me, there was a before and an after.
I carried the Dad I had left behind in my head.
Then I came home and met the Dad who existed now.
The difference could be enormous.
Things that had gradually become normal to everyone around him were anything but normal to me.
I noticed them because I hadn't been there to become accustomed to them.
Sometimes I would react to something Dad did or said and everyone else barely seemed to notice.
Not because they didn't care.
They had simply acclimatised.
They had been living through the descent with him.
I had arrived somewhere further down it.
And suddenly I could see just how far he had travelled.
That was incredibly difficult.
The Distance Between Visits
Then I would leave again.
Back to New Zealand.
Back to phone calls and conversations from thousands of miles away.
And Dad would continue changing without me.
The next time I returned, there would be another jump.
Another version of Dad that everyone around him had gradually learned to recognise but that I had never met before.
In some ways, I think the distance made the changes more brutal.
I didn't experience the gentle slope.
I experienced the drops.
And every time I came home, I had to catch up emotionally with something everyone else had already been living with.
There was guilt in that too.
My family were dealing with the reality of Dad's dementia every day while I was on the other side of the world.
I wasn't there for the difficult mornings.
The appointments.
The practicalities.
The endless repetition.
The gradual deterioration.
I wasn't there for his descent.
And that was hard to carry.
Loving Someone From the Other Side of the World
There is something particularly painful about being thousands of miles away when someone you love is dying.
You know time is passing.
You know things are changing.
You know there will be things you won't witness and moments you can never get back.
But knowing that doesn't magically allow you to be there.
I couldn't stop Dad's dementia.
I couldn't stop time.
And I couldn't bridge the physical distance between Wales and New Zealand simply because I desperately wanted to.
Perhaps that helplessness is one of the reasons the Dementia Head became so important to me.
I needed somewhere to put what I was experiencing.
The shock of coming home.
The guilt of leaving again.
The strange experience of recognising my father and, at the same time, discovering how much had changed.
And the knowledge that while I was away, the disease would continue its work.
What Had Disappeared While I Was Gone?
That question began to haunt the sculpture.
Every time I returned, there seemed to be another difference.
Something altered.
Something diminished.
Something that had once been familiar but was no longer quite there.
It made me think about dementia not simply as forgetting, but as absence.
What happens to all those pieces of a person as the disease progresses?
Where does a memory go when it can no longer be reached?
Where does a familiar behaviour go?
A skill?
A recognition?
A piece of personality?
The Dad I remembered hadn't vanished completely.
But there were increasingly spaces between the man in my memory and the man standing in front of me.
And that gave me the visual language for the sculpture.
I began to think about holes.
Physical spaces where something had once existed.
Missing pieces.
Absences.
Not an empty head.
A head from which parts of a lifetime appeared to be disappearing.
And when I began making those holes, I didn't want them confined to Dad's mind.
Their story would eventually travel beyond the Head itself.
Chapter 3 – The Holes Left Behind
Once I began thinking about absence, the physical form of the Dementia Head started to make sense.
I didn't want to create a sculpture that simply looked old or confused.
I wanted to create something that appeared to be losing pieces of itself.
So I began making holes.
Where Something Used to Be
The holes became one of the most important elements of the sculpture.
They are not simply empty spaces.
To me, each one represents something that was once there.
A memory.
A recognition.
A connection.
A skill.
A familiar response.
A fragment of a person accumulated over an entire lifetime.
My experience of Dad undoubtedly influenced this.
Because I hadn't been there throughout his day-to-day decline, I encountered his dementia in intervals.
I would leave.
Time would pass.
I would return.
And something would be different.
It sometimes felt as though pieces had disappeared while I was gone.
That became the idea behind the holes.
They made absence visible.
You can see the space.
You can see where something should be.
But whatever once occupied it can no longer be reached.
The Lights Going Out
I began imagining dementia as though lights were gradually going out within the brain.
Not everything disappearing at once.
One connection.
Then another.
A room that was once illuminated becoming dark.
And yet somewhere else, another light might still be burning.
That was important.
I didn't want the Head to become completely empty because that would suggest that the person had already disappeared.
Dad hadn't.
There could still be moments of recognition.
Familiar responses.
Pieces of the man we knew suddenly appearing through everything that was changing.
The sculpture needed to hold both things at once:
what was disappearing and what remained.
A Life Moving Backwards
I also wanted to explore the sense of regression that dementia can bring.
We spend the first part of our lives accumulating things.
Language.
Knowledge.
Independence.
Memories.
Skills.
Relationships.
Experiences.
We build ourselves.
We become adults.
We become independent.
We care for other people.
And then dementia can begin dismantling some of what has been built.
The person who once cared for others may gradually become dependent upon others for their own care.
Roles reverse.
Abilities disappear.
Independence diminishes.
There is something particularly cruel about watching an entire lifetime of learning and experience begin to unravel.
It made me think of life travelling backwards.
Not neatly.
Not in order.
But gradually returning someone towards dependence.
And for those who love them, there is another strange reversal.
The parent who once held your hand may eventually need you to hold theirs.
The Person Between the Spaces
But the holes were never intended to say that Dad had become nothing.
Quite the opposite.
The material that remains around them became just as important as the spaces themselves.
Because dementia creates a terrible temptation to measure someone by what has been lost.
What can they no longer remember?
What can they no longer do?
Who do they no longer recognise?
What has changed?
But there is another question.
What is still there?
The holes show the losses.
The remaining Head asks us to look at everything the disease hasn't taken.
For me, that distinction mattered enormously.
Dad's brain was changing.
His behaviour was changing.
His abilities were changing.
But dementia did not erase the fact that an entire person had existed before it.
A father.
A husband.
A man with a history.
A personality.
Relationships.
A lifetime of experiences.
The holes could remove pieces.
But they could never rewrite the fact that those pieces had once been there.
The Holes Continue
And I didn't want those holes to stop at the Head.
Their narrative continues down into the wooden plinth.
I created further holes within the base and inlaid them with copper, carrying the same visual language from the mind into the structure beneath it.
The plinth therefore isn't separate from the sculpture.
It continues the thought.
What begins as absence within the Head travels beyond it.
That felt particularly appropriate because dementia doesn't exist in isolation inside one person's brain.
Its effects travel beyond the person experiencing it.
Into relationships.
Into families.
Into the people who love them.
And, in my case, across thousands of miles.
Looking at those holes now, I realise they represent something else for me too.
The holes Dad's dementia left in me.
There are parts of his decline I wasn't there for.
Conversations I didn't have.
Changes that happened while I was on the other side of the world.
Times when I desperately wanted to be closer and couldn't be.
Every visit seemed to confront me with another piece of Dad that had altered.
And every departure meant knowing that more might change before I saw him again.
There is no way to go back and fill those spaces.
Just as there is no way to recover a memory once dementia has taken away the path leading to it.
Perhaps that is why I continued the holes beyond the Head.
They began as a way of representing what was happening within Dad's mind.
But somewhere during the making of this sculpture, they became something more personal.
They became the spaces dementia was creating around him.
Within our family.
Within our relationships.
And within me.
The copper may fill the physical holes in the wooden plinth.
But the holes themselves remain visible.
I think there is something truthful in that.
Some losses cannot be repaired by pretending the space isn't there.
You learn to carry the space with you.
Dad's dementia left holes in his world.
It left holes in ours.
And it left holes in me.
Chapter 4 – The View From the Other Side of the World
Creating the Dementia Head forced me to confront something I couldn't escape.
I could imagine what was happening inside Dad's mind.
I could research dementia.
I could listen to my family.
I could observe the enormous differences each time I returned home.
But I could never actually know what Dad was experiencing.
I wasn't inside his mind.
And for much of his decline, I wasn't even in the same country.
I was his daughter standing thousands of miles away, trying to make sense of something I could neither see completely nor stop.
The Experience I Didn't Witness
There are large parts of Dad's decline that I simply didn't see.
My family did.
They lived through the everyday reality.
They adapted to each new behaviour.
They dealt with the practicalities.
They experienced all those tiny changes that eventually became enormous ones.
I didn't.
My experience was fragmented.
A visit.
A phone call.
News from home.
Another visit.
Another shock.
Then back to New Zealand again.
In a strange way, my experience of Dad's dementia had holes in it too.
There were gaps where life had continued without me.
And I had to fill those gaps with what other people told me, what I remembered and what I discovered the next time I came home.
That inevitably shaped the artwork.
Trying to Imagine the Inside
Perhaps that is why I became so fascinated with what might be happening beneath the surface of the Head.
If I couldn't be there physically, perhaps art gave me another way of trying to get closer.
I began asking questions I knew I could never completely answer.
What does it feel like when a familiar name will no longer come?
Do you know that you've forgotten?
What happens when somebody tells you something about your own life that you cannot remember?
Does a memory disappear completely, or is the path towards it simply lost?
What happens when the people around you know your history better than you can access it yourself?
I could research those questions.
I could read the experiences of others.
But Dad's experience belonged to Dad.
And by the time I desperately wanted some of those answers, he couldn't necessarily give them to me.
That was another kind of loss.
The Daughter and the Artist
Making the Dementia Head meant constantly moving between two parts of myself.
The daughter was emotional.
She was angry about the distance.
Guilty about not being there.
Frightened by the changes.
And grieving somebody who was still alive.
The artist did something different.
She examined.
She questioned.
She researched.
She took those emotions and tried to turn them into objects, surfaces, spaces and images.
Perhaps I needed the artist because the daughter couldn't do anything useful with the helplessness.
I couldn't repair Dad's brain.
I couldn't recover what dementia had taken.
I couldn't rewind the years I had spent thousands of miles away.
But I could make something that acknowledged what was happening.
And through making it, I could begin to confront what was happening to me too.
Grieving Before Someone Has Gone
Dementia introduced me to a particularly complicated kind of grief.
Dad was still alive.
And yet there were already things I was mourning.
Parts of our relationship.
Parts of the man I remembered.
Things I wished I had said.
Things I wished I had been there for.
And because I lived so far away, every goodbye carried another question.
What will be different next time?
I never knew which version of Dad I would meet when I returned.
Or how much further the disease would have progressed.
There is something incredibly painful about leaving somebody you love when you know time is working against you.
That became part of this sculpture too.
Not as a symbol I deliberately placed somewhere.
But as the emotional weight underneath the entire piece.
The Dementia Head wasn't created from Dad's experience alone.
It was created from mine as his daughter.
From distance.
From guilt.
From love.
From helplessness.
And from trying to find some way of holding onto a person who, every time I returned home, seemed a little further away.
Chapter 5 – My Gift To Dad
Before he was the subject of one of my sculptures, he was my Dad.
And before dementia began taking pieces of him away, there was an entire man there.
A man I loved.
A man I admired.
A man I looked up to.
The difficult thing for me to admit is that I'm not sure he ever really knew how much.
The Things We Don't Say
Families can be strange like that.
We can love someone enormously without necessarily saying it.
We assume they know.
We think there will always be another conversation, another visit, another opportunity.
And sometimes there isn't.
Living in New Zealand put thousands of miles between Dad and me. There were phone calls and visits home, but they could never replace simply being there.
I remember speaking to him from New Zealand once and saying:
“I love you.”
Dad's response was:
“Oh, Julia…”
followed by that little light-hearted giggle of his.
It still makes me smile.
It was such a Dad response.
Perhaps I had embarrassed him.
Perhaps he didn't quite know what to do with me suddenly declaring my love from the other side of the world.
Or perhaps that little giggle was simply his way of receiving it.
I don't know.
But I know exactly what I meant when I said it.
I loved him.
I just wish I had told him more.
The Man Before Dementia
When someone develops dementia, there is a danger that the illness becomes the final story told about them.
Their decline becomes what people remember.
The things they forgot.
The things they could no longer do.
The ways in which they changed.
But dementia arrived at the end of Dad's story.
It was not his whole story.
There had already been an entire lifetime before it.
And when I think of Dad, I don't want dementia to have the final word.
I remember the man I admired.
The father I looked up to.
The person whose approval probably mattered to me far more than I ever told him.
And I remember that little giggle.
Those memories belong to me.
Dementia cannot take them from me.
More Than a Sculpture
When I first created the Dementia Head, I was trying to understand what was happening.
I was trying to make sense of the holes.
The distance.
The helplessness.
The things that seemed to disappear between one visit and the next.
But looking at the sculpture now, I understand that I made something else too.
I made a tribute to my father.
Perhaps even a conversation with him that I never quite managed to have.
Art has always been the place where I can say things I struggle to say in words.
So perhaps this sculpture became my way of telling Dad everything I should have told him when I had the chance.
That I admired him.
That I looked up to him.
That I was proud to be his daughter.
And that I loved him.
My Gift to Him
I couldn't stop what was happening to Dad.
I couldn't repair the damage dementia was causing.
I couldn't recover the parts of his decline I missed while living thousands of miles away.
And I cannot go back now and tell him all the things I wish I had said.
But I could make something.
I could take the sadness, the questions, the distance, the guilt, the admiration and the love and put them somewhere.
I put them into this sculpture.
That is why the Dementia Head will never simply be an artwork about dementia to me.
It is my gift to my father.
A way of remembering the man before the illness.
A way of acknowledging what happened to him without allowing what happened to become everything he was.
And perhaps, in the end, a way of saying those words one more time.
I love you, Dad.
I can almost hear the answer.
“Oh, Julia…”
And that little giggle.
Discover The Disorderly Demise of the Cerebral Cortex as a complete collection. Meet all seven Heads, explore the ideas that connect them and see how each sculpture approaches a different experience of the human mind.
Step behind the finished sculptures and see how the Heads were actually made. From moulding my own face and experimenting with materials to painting their interiors, constructing their individual plinths and solving the inevitable problems along the way — this is the making of the collection.
The Dementia Head is part of The Disorderly Demise of the Cerebral Cortex, a collection of seven contemporary sculptures exploring mental health, identity and the hidden landscapes of the human mind. Each sculpture tells a different story, inviting viewers to look beyond diagnosis and discover the person within. Explore the collection:
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