How to meaningfully reconnect with those who have dementia

Thirty years ago,

I walked into a nursing home,

and my life changed forever.

I was there to visit my grandmother Alice.

She was a very powerful woman

who had lost a battle with a stroke
that stole her ability to speak.

Alice had just three forms
of communication left.

She had this sound
that was like, "Tss, tss, tss,"

that she could shift in tone

from emphatic, "no, no, no,"

to enticing, "yes, you've almost got it."

She had an incredibly
expressive index finger

which she could shake
and point with frustration.

And she had these enormous pale blue eyes

that she could open
and close for emphasis.

Wide open seemed to say,

"Yes, you've almost got it,"

and closing slowly

was, well, it didn't really
need much translation.

It turns out that Alice had taught me

that everyone has a story.

Everyone has a story.

The challenge for the listener

is how to invite it into being,

and how to really hear it.

Now, Alzheimer's and dementia,

these are two words that,
when you say them in front of people,

you can watch a cloud descend over them.

You can imagine me at dinner parties.

"What do you do?"

"Well, I invite people with Alzheimer's
and dementia into expression.

Where are you going?"

(Laughter)

Fear and stigma wrap themselves
so tightly around an experience

that affects 47 million people
across the world,

and they can live with this diagnosis
for between 10 and 15 years,

and that number, 47 million,

is supposed to triple by 2050.

Family and friends can fade away

because they don't know
how to be in your company,

they don't know what to say,

and suddenly,

when you need other people the most,

you can find yourself
really painfully alone,

unsure of the meaning
and the value of your own life.

Science is pushing for treatments,

dreaming of cures,

but loosening that grip of stigma and fear

could ease the pain
of so many people right now.

And luckily, meaningful connection
doesn't take a pill.

It takes reaching out.

It takes listening.

And it takes a dose of wonder.

That really has become my unending quest,

set in motion by Alice

and then later on by really
countless elders in nursing homes

and day centers

and those struggling to stay at home.

And it comes down the question of how.

How do you meaningful connect?

I got a big part of that answer
from a long-married couple

in Milwaukee, Wisconsin, where I'm from,

Fran and Jim,

whom I met on a rather dreary winter day
in their tiny little kitchen

in a humble duplex over by Lake Michigan.

And when I walked in,

Fran and a caregiver and a care manager

greeted me really warmly,

and Jim stood staring straight ahead,

silent.

He was on a long,
slow journey into dementia

and was now beyond words.

I was there as part of a project team.

We were doing what we called
"artistic house calls,"

with a really simple goal

of inviting Jim into creative expression,

and hopeful in modeling
for Fran and the caregivers

how they could meaningfully connect
using imagination and wonder.

Now, this was going to be no small task,

because it turns out
Jim had not spoken in months.

Could he even respond
if I invited him into expression?

I didn't know.

Family members, when they try to connect,

most commonly will invoke a shared past.

We say things like,

"Do you remember that time?"

But nine times out of 10,

the pathway for that one answer
to travel in the brain is broken,

and we're left alone with a loved one

in the fog.

But there is another way in.

I call them beautiful questions.

A beautiful question is one
that opens a shared path of discovery.

With no right or wrong answer,

a beautiful question helps us
shift away from the expectation of memory

into the freedom of imagination,

a thousand possible responses

for people with cognitive challenges.

Now, back in the kitchen,

I did know one thing about Jim.

I knew that he liked
to walk along Lake Michigan,

and when I looked around that kichen,

I saw, over by the stove,

this trunk that was just covered
in little pieces of driftwood.

And I thought,

"I'll try a question

that he could answer without words."

So I tried, "Jim,

can you show me how water moves?"

It was silent for a while,

but then really slowly he took a step

over to that trunk

and he picked up a piece of the driftwood

and he held it out,

and then very slowly
he began to move his arm,

leading with that driftwood.

In his hand, it became buoyant,

in sync with the motion of the waves
that he made with his arm.

It began this slow journey

across calm waters,

this gentle rolling to the shore.

Transferring his weight
from left to right and back again,

Jim became the waves.

His grace and his strength
just took our breath away.

For 20 minutes,

he animated one piece
of driftwood after the other.

Suddenly, he was not disabled.

We were not gathered in this kitchen

for a care crisis.

Jim was a master puppeteer,

an artist,

a dancer.

Fran later told me

that that moment had been
a turning point for her,

that she learned how to connect with him

even as he progressed
through the dementia.

And it really became
a turning point for me too.

I learned that this creative,
open-ended approach

could help families shift,

expand their understanding of dementia

as more than just tragic
emptiness and loss

into also meaningful connection

and hope

and love.

Because, creative expression in any form

is generative.

It helps make beauty and meaning and value

where there might have been
absolutely nothing before.

If we can infuse
that creativity into care,

caregivers can invite a partner
into meaning-making,

and in that moment care,

which is so often associated with loss,

can become generative.

But so many settings of care

offer bingo

and balloon toss.

Activities are passive
and entertainment-oriented.

Elders sit and watch and applaud,

really just distracted
until the next meal.

Loved ones trying to keep
their partners at home

sometimes don't have anything to do,

and so they resort
to watching television alone,

which compounds the symptoms of dementia
with what researchers now tell us

really are the devastating impacts
of social isolation and loneliness.

But what if meaning-making
could be accessible

to elders and their care partners
wherever they lived?

I've really been totally
transformed and captivated

by bringing these
creative tools to caregivers

and watching that spark
of joy and connection,

discovering that creative play

can remind them of why
they do what they do.

Bringing this creative care to scale

could truly shift the field.

But could we do it?

Could we infuse it
into a whole care organization

or an entire care system?

The first step towards that goal for me

was to assemble a giant team
of artists and elders and caregivers

in one care facility in Milwaukee.

Together, over two years,

we tackled reimagining the story
of Homer's "Odyssey."

We explored themes.

We wrote poems.

Together, we created a mile-long weaving.

We choreographed original dances.

We even explored and learned Ancient Greek

with the help of a classics scholar.

Hundreds of creative workshops we embedded
into the daily activities calendar

and invited the family members
to join right along with us,

and had caregivers and staff
from every single area of care

collaborating on programming
for the first time.

The culminating moment

was an original,

professionally produced play

that blended the professional performers
right alongside the elders

and the caregivers,

and we invited a paying audience

to follow us from scene to scene,

one in the nursing home,

in the assisted living dining room,

and finally in the chapel

for the final scene

where a chorus of elders

all playing Penelope

lovingly welcomed Odysseus
and the audience home.

Together, we had dared
to make something beautiful,

to invite elders, some with dementia,

some on hospice,

into making meaning over time,

to learn and grow as artists.

All this in a place where people
were dying every day.

I find myself now in a place

where I'm having to tackle this challenge

of meeting a person with dementia

across that gap

in a more personal way.

At a family dinner over the holidays,

my mother, who was seated next to me,

turned to me and said, "Where's Annie?"

My funny and beautiful and feisty mother

had been diagnosed with Alzheimer's.

And I found myself in that place
that everyone dreads.

She didn't recognize me.

And I had to figure out fast
if I could do what I'd been coaching

thousands of other people to do,

to connect across that gap.

"Do you mean Ellen?" I said,

because my sister's empty chair
was just right across the table from us.

"She just went to the bathroom."

And my mother looked at me,

and then something deep inside sparked,

and she reached out and smiled
and touched my shoulder

and she said, "You're right there."

And I said, "Yes, I am right here."

I know that that moment
is going to happen again and again,

not just for me and my mom

but for all 47 million people
across the world

and the hundreds of millions more

who love them.

How will we answer this challenge

that is going to touch the lives
of every family?

How are our care systems
going to answer that challenge?

I hope it is with a beautiful question,

one that invites us to find each other

and connect.

I hope our answer

is that we value care

and that care can be generative

and beautiful,

and that care can put us in touch
with the deepest parts of our humanity,

our yearning to connect

and make meaning together

all the way to the end.

Thank you.

(Applause)