Transcriber: Mollie Wilson-Milesi Reviewer: Peter van de Ven
Hello, I'm a neurologist,
and I see lots of patients with dementia and Alzheimer's.
But I don't want you to feel sad about that.
I have to admit, I don't have a cure for you today for Alzheimer's,
I don't have a way to stop it stealing away your memories,
but I do have an idea how we can stop it stealing away our identities,
the very core, the essence of who we are.
And that's not going to require the front row to take any tablets
or the second row to have any brain surgery.
It's just going to require a little bit of imagination.
What better place for imagination than here at the theatre?
I'm going to start with a patient of mine called Anita,
and she's from Dublin.
I'm from Dublin as well, as you can tell from when I say "Dublin."
(Laughter)
People always get confused.
And she had some senior moments in terms of her memory loss,
and I'm pretty sure many of you will recognize these.
She was muddling up faces and names, and her family said,
"Oh, you said that already."
That sort of thing. She missed the exit off the motorway.
All senior moments.
I can see people nodding, smiling, apprehensive.
I don't want you to worry.
But things changed for her. She knew that something was really wrong.
It all started when she went on a walk of a fishing village called Howth.
Howth is in Dublin, again, where I'm from,
and it's a beautiful place.
It was a walk that she did all the time. She knew it really well.
She did it with her husband, Patrick, and the rest of her walking group.
If you remember one thing from my talk, please go and visit this village.
The walk starts at the harbor, where there're beautiful sea lions,
and then you head up by the promenade, up the cliffs,
where you see peregrines and razorbills and kittiwakes.
Then you go by W. B. Yates's childhood home at Balscadden Bay,
back along to the harbor,
where you have to have the seafood chowder.
It's a three-hour loop.
This particular day, Patrick wasn't able to make it;
her husband, he'd sprained his ankle.
So off she went with the group, and somehow she got disorientated.
She lost sight of everyone else,
and they didn't realize they'd left her behind.
So next thing you know, she's sitting on the ground,
and a man from the golf course finds her half an hour later.
And she's crying her eyes out,
and she can't figure out
how to use her phone to call her husband, Patrick.
And it was pretty soon after that that she ended up at my clinic.
I did the tests that neurologists do.
We get you to draw clocks and remember lists of words,
all that silly stuff.
And I also did a scan.
And the scan confirms that the diagnosis was Alzheimer's,
which is the most common type of dementia.
In Alzheimer's,
what happens is the volume of the brain decreases, it shrinks -
particularly the hippocampus, which is the memory centre on either side.
And that was the diagnosis for her.
And we had a bit of a chat about what that meant and how it all made sense now.
But she had this question later down the line.
She said, "Now that I have Alzheimer's, am I going to be the same person?"
And this question floored me: Am I going to be the same person?
Because sameness is about identity.
Am I the same person before and after something happens to my brain?
So let's just say
you have a brain transplant this afternoon.
Are you the same person after as before?
Let's say all of you up there take LSD -
because I get that impression.
(Laughter)
It's always them.
If you take LSD and you have a mind-altering trip,
are you the same person after as you were before?
And the people at the back:
Are you the same person after you've heard a TEDx Talk
as you were before?
These are all questions about identity.
And you would think, being a brain doctor,
that I'd be really well-placed to answer these questions about identity.
The truth is
I've never really had any conventional medical education about this stuff.
That education, at least some of it, was in an auditorium,
and I'm going to give you an insider tour.
This is a medical ritual. It's called "Grand Rounds."
If you've ever been in a hospital clinic,
chances are this might have been happening down the hall.
Grand Rounds is pretty much the same every week of the year
in every hospital all over the world,
and in the hospitals I worked in
in Mozambique, India, everywhere I've been.
And what happens is a patient is wheeled in or walked in -
they usually have a gown on,
they have an esoteric disorder -
and their case is presented to the audience.
And the audience is medical students and doctors, usually.
And it's a very useful medical ritual because expert opinions are provided,
and it's educational for everyone in the audience as well.
So it's valuable.
But the thing is I've never heard the word "identity" being spoken there.
Identity, it's is just not the place. It's not the time.
So it's a place, really, where we point at your thyroid,
or we point at your dilated pupils,
or I'll feel your enlarged spleen or your liver.
But Grand Rounds is not a place for emotions;
it's not a place for philosophy.
Grand Rounds, as valuable as it is, speaks more to the patient
rather than the person.
We speak about the loss of blood or loss of lung function
rather than the loss of self and identity.
So I realized I'd have to find my answers to Anita's questions about Anita
somewhere else.
And so I've gone back to the stories of my patients.
Because at my clinic in London, I see lawyers and cabbies,
and I see tube drivers and teachers,
and in those stories,
there are really profound insights into who we are and who we can become.
Because, sure, there's stories of the lost memories
or the limbs that aren't working anymore,
but there are also stories of benefits denied and citizenship denied.
In those stories, there are questions about identity,
but there are lots of answers too.
And one of those stories was the story of a man called Martin.
Martin was a patient of mine from the west of Ireland -
this is when I used to work in Ireland -
and he was really well liked in his village.
There's this competition in Ireland -
if you're Irish, you will know this competition -
it's called the Tidy Towns competition.
And towns compete with each other to be the tidiest.
(Laughter)
It is absolutely brutal.
Don't laugh. It is absolutely brutal!
(Laughter)
Martin was head of his committee in his town because he was good at this stuff.
He was good. He was loyal. He was reliable.
He was also, I was told,
the most attractive bachelor in the village.
He wore braces. He wore cuff links.
He was good.
(Laughter)
Martin was an amazing man,
and unfortunately, over the course of a couple of years,
he started to change.
I found about this later down the line,
but before you knew it,
he was staggering down the street,
he was hostile,
he hadn't showered weeks, months,
braces, cuff links, long gone.
He arrives to me in this state at my clinic,
and I do the tests we usually do,
and one of those tests was an MRI scan.
This MRI scan once again confirmed that he had dementia.
But it wasn't Alzheimer's, which affects memory,
it was a different type of dementia further forward in the brain,
called frontotemporal dementia -
I often see it in younger patients.
And instead of affecting memory, it affects behavior and personality.
And that's what's happened to him.
So this question about identity comes up again:
Is Martin, do you really think,
the same person now as he staggers down the streets,
as he was when he cared about people,
he was polite to people, he was involved in the Tidy Towns?
And his family certainly didn't think so.
I remember Tara, his niece, saying to me, "He's just not the same person."
He just didn't seem to be the same person.
What really struck them was a change in his sympathy and his empathy.
So, for example, his sister had cancer, and it just didn't seem to register.
He just didn't really seem to care.
And that was really unlike him, Tara said.
It turns out that personality really matters
when you're trying to make a decision
about what you think of another person,
or certainly whether you think they're the same person,
and what really counts are moral traits.
So try to think of someone you know really well -
ideally, someone with empathy and honesty and compassion,
those moral traits -
and imagine they changed overnight.
Would you still feel they were the same person?
It seems not.
This was backed up by some research
that was done at the University of Arizona and Yale
by Shaun Nichols and Nina Strohminger.
They asked families of people with frontotemporal dementia,
"Do you think your loved one has become a stranger, essentially?"
And they asked these sorts of identity questions:
Do you feel like you still know who the patient is?
Do they seem like a stranger to you?
Do you still feel they are the same person underneath?
Of all the changes in frontotemporal dementia,
only one change confirmed a fundamental transformation,
only one change created their loved one into a stranger,
and that was morality -
moral change or moral impairment, as they called it.
So if there was a transformation in empathy, compassion, sympathy, etc.,
that meant that the person became a stranger.
And actually, the really dramatic stuff that Martin had,
things like a change in sex drive or hygiene, for example, or paranoia,
that didn't actually create a stranger.
It becomes really clear that personality matters,
that moral change matters.
And you have to wonder, Why is that?
Why do we care so much about this stuff?
It turns out
we depend on moral change to figure out whether the person next to us -
this is awkward if you're looking at the person next to you -
whether the person next to you presents an opportunity or a threat.
You look at things like sincerity, trustworthiness, generosity.
When you meet someone at the interval, you size them up a little bit,
maybe you'll go for a drink together this evening if all goes well,
and you will look at those capacities, those moral capacities,
to see what you think of them,
whether you should collaborate, cooperate or whatever else you decide to do.
And if those traits change,
that will really change your opinion of them.
I want to say, by the way,
that if you know someone with frontotemporal dementia,
I sort of want to reassure you
and say that not everyone has the profound dramatic changes in moral character
that Martin did.
But certainly his story taught me, really,
that personality, moral change, is what counts when it comes to identity.
And for his family, Martin just wasn't Martin anymore.
So, what does that mean for Anita?
Anita has Alzheimer's.
She's got lost on that hill.
She's asking me, "Am I going to be the same person as I was before?"
The thing is with Alzheimer's, it's memory loss that's the hallmark.
It's not personality and moral change.
It's memory loss.
And sure, people can get behavioral changes down the line,
they can get paranoid or irritable,
and that's really distressing for them and their families.
When it comes to identity, though,
moral traits are actually relatively spared.
And certainly, you can live for many years
in the mild and moderate stages of Alzheimer's without these changes.
People can live well with Alzheimer's,
but that's not what you see represented in the media, I worry.
And the same researchers I mentioned before
looked at the same ideas.
They actually asked people with Alzheimer's,
"Do you think your loved one is the same person as they were before?"
What they found was that it was actually moral character that made the difference,
even though amnesia is the hallmark of Alzheimer's.
That makes sense to me.
If you think about Anita,
you've got to think about her before and during and after, you know?
And I'm thinking, What links can we find between her before and during and after?
And sure, her memories have vanished, but actually, there's lots to connect her.
There's still all her intentions and her hopes and her goals and her dreams.
Then I started thinking, right,
What have we got if we don't have memory?
And I came across this concept of embodiment.
I found it in the world of philosophy, which is so far out of my comfort zone,
I can't even tell you.
I would rather be on a stage
in front of 800 people at a TEDx talk for 15 minutes with no notes
rather than I read a philosophy book.
But actually, I've managed to come to grips with this,
and I read a philosophy book and a few more.
The idea of embodiment simply is it's not just that we have bodies,
but we are bodies.
We're constantly interacting with the world.
We're embedded in it, all of us right now.
And dementia can't take that away.
So if you think about Anita, Anita is the stories that she tells.
She is the way that she bounces her granddaughter on her knee.
She's the way that she hooks Patrick, her husband.
She's the tears that she cries when she watches EastEnders.
And she is the songs that she sings really badly in the shower -
she did tell me she was always a bad singer;
she couldn't blame the Alzheimer's.
So she's embodied.
Her gestures are embodied.
Her habits, her actions, they're all completely embodied.
She is resolutely present in the world, and dementia cannot take that away.
I'll be honest.
If you know someone with Alzheimer's -
like an uncle with Alzheimer's -
and he's wandered out of the house,
or he's paranoid, his morals, personality have changed later on,
these ideas of embodiment are really difficult to process,
and it is OK to acknowledge that -
there will be bad days.
But I'm asking people to hang on to this idea of embodiment,
for better days, for better moments,
maybe for worse days or worse moments.
Because embodiment allows people to exist in the world.
And it's not just about you and I.
People with Alzheimer's, more recent studies have shown,
often feel that they still have a sense of self and identity.
There are probably some people in this audience today
who have a known diagnosis of Alzheimer's.
And embodiment is also a concept for them,
because I want to say that you are here and that we see you.
The medical model of Alzheimer's, finally,
is one that I hope I can ask for forgiveness for
because sometimes, and things are getting better,
but sometimes it has this narrative that revolves, in terms of Alzheimer's,
around inability and invisibility.
It sees Anita as fading away rather than stepping forth.
We lose her really.
We lose her embodiment and her gestures
and her expression, her autonomy -
all of those things that exist beyond memory.
Moving away from a negative definition of Alzheimer's
is not for a moment to dispute its impairment
or the ramifications for family and friends,
and it doesn't take away
from the fact that every day I hope for a cure for Alzheimer's.
But it is to think about how we have chosen to frame this condition.
I think about Anita every time I go back to Balscadden Bay
and I go up the cliffs and I come back by the tramline
and I have the seafood chowder.
I think about her because she taught me there is more to us than our memories.
She taught me that there is more to Alzheimer's than loss and failure.
Because there at Balscadden Bay,
she was lost but she was found again.
Thank you.
(Applause)