Transcriber: Vibeke Drevsen Bach Reviewer: Tanya Cushman
Well, this is Jens!
Jens was a wholehearted biology teacher
but also a gardener.
And he really loved to see children blossom and grow.
But in the age of 58,
he had dementia.
He was diagnosed with Alzheimer’s.
Through 18 years,
his body and his brain deteriorated.
He started to change.
His life changed.
All changed!
And within the family, they had difficulties as well
because they started to see how they lost their dad.
Now, millions of families all around the globe,
they share the same losses, same concerns as Jens, I imagine.
But here in Denmark, we are approximately -
right now, we are 89,000 persons living with dementia,
and around 400,000 family members
are also living beside a person with dementia.
But these numbers,
they will grow dramatically worldwide.
We can see that millions of families worldwide,
they will need guidance
in how to be together with persons with dementia
if we want this to become a good journey.
But here’s crucial information.
Many family members,
they rarely attend many dementia courses.
They often end up using the “learning-by-doing" method.
I think we all know that.
Some will succeed and help their loved ones to blossom,
but many won’t.
And of course, they won’t,
because if you don’t know what you take part in,
how could you then actually make a person blossom?
But worst case
is that family members, as well, start accelerating more ill-being
and also more progression of the disease,
and that’s quite a paradox
when you really want to help your loved ones.
I met a family.
I met Jens’ family
at a dementia presentation I gave back in 2011.
He was 10 years into his disease
at that time,
and I saw the whole family sitting there in the room.
And after that evening,
where I spoke about metaphorical work within dementia,
the son Thomas, he came and asked me,
“Please, Vibeke, could you be our support?
Could you become our guide in our family?"
And it turned into eight years of joint adventure
and a very, very strong friendship.
You could say I became the dementia supervisor,
or the metaphorical dementia supervisor,
and Jens, he became our teacher.
He was a teacher; now he became one again.
But he also became a hero of mine!
But let me present to you a little bit of the metaphorical framework
that I have spent many years to create,
and together with Jens and his family, have spent years to develop.
Now, here you see two brain scans.
When families come to the hospital
and their loved ones are having the diagnose,
they will often be presented to a picture like this.
But many of us, we are not able to read these,
and families can't either.
So, what I did was I started to figure out
could I translate these pictures into some well-known pictures?
So let’s see what happens when we translate them
into two different, very well-known images for all of us.
Here you have the earth and you have the moon.
The earth is a metaphor for the healthy brain,
and the moon, of course, is a metaphor for a brain with severe Alzheimer's
or another kind of dementia.
If we then add a new metaphor,
because there’s years in between the two brains,
if so, if we add years, we could call that a journey.
Now we have a new sentence.
We could talk about dementia as a "journey from the earth to the moon".
Dementia is a journey from the earth to the moon -
it’s a continual part of a life journey,
but it’s now on very difficult [and different] travel conditions.
It’s a journey from a very well-known life to a very unfamiliar life,
a radically different life.
If we then add another sentence,
it could be the word "VIP" - very important person -
we will now have
“Dementia is a journey from the earth to the moon for very important persons”.
If we become very important persons -
persons with dementia are becoming very important persons -
we will see that they have needs and demands.
And when you are VIP,
these demands should become the main priority for the crew.
I presented my metaphorical fantasy world for Thomas, one of the sons of Jens.
And I recall one day
that I was going to tell him about dementia in a new way,
in this metaphorical way,
and I said something like this:
“Well, your father, he's got a one-way ticket.
He got a one-way ticket to the moon, Thomas, the day he was diagnosed.
That day, he became a moon traveler,
he became an explorer,
and he became an astronaut
that day he was diagnosed.
And he was sent on a dangerous mission to lead and train you as a family
and all the fellow travelers
to explore new dimensions of space, inner space.
He will now start to send important information to all of us,
to all of you as a family,
back to Planet Earth.
And he’ll tell about the journey,
he’ll try to communicate,
he’ll try to teach you how to communicate and stay in contact
all the way to the moon
if you're connected, Thomas."
Let me give up another part of a conversation I had with Thomas.
We were in the kitchen one day,
and I was going to tell him about what’s actually going on in the brain,
and it’s difficult to understand for almost all of us.
So I said to him:
“The further away your dad gets from the well-known earth,
the more of his brain and inner navigation equipment will be deleted.
Words and phrases, behavior will start to change.
The words and phrases will mutate,
but he'll start to become inventive,
your father.
He will start to find new words.
He'll replace the words with new words.
He'll start to have a personal coded language;
you could call that 'a moon language'.
And when you have the moon language,
it could sound like it doesn’t mean anything,
but then you have to listen to the psychological depths.
You have to learn to translate the moon language.
And you have to train to adopt this language
if you want to stay connected."
That day, both Thomas and I,
we suddenly found out that his father, he had a very fine sentence.
It was like “Lalala”.
Everyone knows the lalala,
but for Jens, it meant -
sometimes, it could sound like this, “La la la la la la la la la”,
and it meant, "I am happy and fulfilled".
Other days, he would say,
“Lalalalalalalalalalalalalala”,
and it meant "I am scared. I'm really afraid. Please help me."
During years, Thomas and I -
and that’s eight years we’re talking about -
during these years,
Thomas and I started to invent new words,
and Thomas, he's a master in words,
so he opened up a whole new area, and together we were just elaborating.
What could that be if we go into the story?
So we started with “one-way ticket to the moon”,
and “return ticket to the moon”
and “the stewardess”
and “the hero” and “the crew”
and “travel documents” and so forth.
You know, we have all travelled.
Many times, over the years,
Thomas and I and his family
and the crew who became a part of the journey with Jens,
we travelled into his reality.
We learned to travel in his time, space time.
We learned to go into new dimensions of reality,
where everything was upside down.
We connected to him through the moon language
and through playing and playfulness,
and that makes a huge difference
when it comes to seeing a person [with dementia] blossom.
Other crucial information is about our language.
Now, when families come to meet doctors and healthcare systems,
they will be presented with a certain language;
it’s a language that families often end up adopting.
It's a terminology and a narrative
that is used for professionals and healthcare systems,
but it’s not based for families to live life upon.
So the person diagnosed can easily end up becoming "a patient” in the family
when we take the same language and bring it into the family
because it is kind of like glasses you put on.
Then it’s difficult to see a brave family member
who’s really struggling to continue to live a good life.
So, do families come to treat their loved ones
as “a patient”, “a demented”, “a person with dementia”
or “a moon traveler”
or “a brave astronaut on a mission”?
The good news is that if we help families in new ways,
we can actually help them to make their loved one blossom.
But we need to bring in new communication methods.
If we bring old communication methods into play in the field,
we can create new learning methods,
we can create “dementia life language”.
For thousands of years, mankind has spoken in words:
we’ve used stories, we’ve put poems,
we've made theaters, and we’ve used songs.
And this have been used to pass on important information,
crucial information,
values, ideas
to both family and society.
I’ve used all these powerful tools,
all of them,
for fifteen years in the field of dementia, in Denmark.
Many, many thousand persons have gained from that work.
If we use these words,
we can actually activate a kind of gateway for the families
but also for the caregivers and me as well.
A gateway that opens for support and imagination -
a new language.
Wouldn’t it be more uplifting for all of us
if our loved one were desribed as “a brave moon traveler”,
maybe even “a strong astronaut sent on a dangerous mission”,
rather than “a patient” or “a demented, slowly disappearing”?
If we could really understand
the depths and the ranks of this potential at a global level,
we could move mountains.
We could help families all over the world
because we talk in pictures and stories - all of us.
And we’ve seen the moon and the earth.
So we have a key here,
and the key, we could use to activate all our power tools,
family power tools,
power tools such as imagination,
intuition,
creativity, playfulness,
empathy and compassion
and love.
Families more intuitively start to understand
both the dementia disease -
they start to understand dementia experience,
and they know now what’s better or worse
just because they know your story.
That changes everything.
They become visionary, the families.
They become brave and inventive,
just like in Jens’ family,
and this is the whole point.
So now, I have to ask us: do we dare?
Do we dare to bring out a new language into the dementia field,
a next level of public learning through metaphors?
Jens passed away five months ago,
and the family made his funeral a tribute,
a tribute to a very brave dementia teacher
but also a moon traveler and a brave astronaut
who taught all of them and all of us
about new dimensions of the journey to the moon.
He was honored and celebrated as a true hero.
Fourteen years into his disease,
when he had almost lost all his language and his ability to walk
and he was fighting for his life,
then he suddenly said, out of the blue:
“Believe in me.
I believe in me.
I believe in you.”
So now it’s time for us, all of us - we are all family members,
we could all have dementia or live beside a person -
it’s up to us at Planet Earth to be brave.
So let’s make metaphors become our game changer.
Let’s shoot for the moon.
Thank you.
(Applause)
[Thank you]