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.