How storytelling can improve Alzheimer's and dementia care | Jay Newton-Small | TEDxMidAtlanticSalon

Jay Newton-Small is cofounder of MemoryWell, a startup of journalists who tell the life stories of those living with Alzheimer’s and dementia in order to improve their care. Moving her dad into long-term Alzheimer’s care was one of the hardest days of Jay's life. And in the months and years that followed, she was desperate to find better ways to ensure his nursing staff understood him. MemoryWell grew out of that experience.

Previously, Newton-Small was Washington correspondent for TIME Magazine, where she remains a contributor. At TIME she covered politics as well as stories on five continents from conflicts in the Middle East to the earthquake in Haiti and the November 2015 Paris terror attacks. She has written more than half a dozen TIME cover stories and interviewed numerous heads of state, including Presidents Barack Obama and George W. Bush.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

My junior year of college,
I went abroad and I studied in Paris.

My father came to visit me,

and he took me and my
two roommates out for dinner.

We had this lovely, raucous dinner;

my dad was Australian
and just really gregarious

and loved to tell
tons of really big, fun stories

about his 40-year career
in the United Nations

doing development work all over the world.

And that night, he told a story
about how he'd first gotten into the UN.

He talked about how, when he was young,

an 18-year-old
living in Sydney, Australia,

he was the black sheep of the family.

He didn't follow his brothers
and sisters into college;

he didn't really want to go to college.

All he wanted to do was travel.

And so, at the age of 18,
he got on a boat,

because there were no planes back then,

and he went to London.

And he was working in London,
like any good Australian,

bartending in Earl's Court

and spending his vacations
out on the continent

and kind of just exploring the world.

And on off-days and weekends,

he took a job driving
for the British government.

And sometimes he drove Winston Churchill.

Winston Churchill at that point
was the retired Prime Minister of the UK,

and he liked to talk to his drivers,

and he would say, "So, Small,
what are you doing with your life?"

And my dad would be like,

"I don't know, I'm having fun,
I'm travelling; it's so great."

And Churchill was like, "Nah - "

He had more ambitions for my dad
than my dad had for himself,

so he was like, "If you go get a degree,
I'll write a recommendation for you."

My dad was like, "Wow,
a recommendation from Winston Churchill,

that's pretty amazing!"

So he went to, not really college,

he went and got a one-year certificate
from the University College of London,

took it back to Churchill,
and said, "Here's my degree."

Churchill sort of looked at him and went,
"I don't know if that's a degree ... "

But he wrote him a recommendation anyway

for this new thing
called the United Nations.

And it completely changed his life.

He ended up living in Africa for 20 years,

he met my mother, who was Chinese-Malay
and a lawyer in Zambia.

They married in Malawi,
and I was born in New York.

It was sort of a classic
United Nations love story.

(Laughter)

Of course, my roommates loved this story,

everyone always loved the story
when my dad told it,

and we finished dinner,
and my father went to pay the check,

and then, all of a sudden, he realized
that he didn't know where his hotel was.

He didn't even realize, I think,
what city he was in.

And I realized for the first time
that my dad wasn't drunk.

It wasn't alcohol,
it wasn't something else;

he just didn't know.

And I had this moment of fear
that something was really wrong.

And indeed, a year later, he was diagnosed
with early-onset Alzheimer's,

at the age of 58.

And for those of you in the audience
who don't know Alzheimer's,

Alzheimer's is not senility,

this is not like, you know,
when you're 100 years old,

and you can't remember
where you left your keys.

Alzheimer's is increasingly affecting
younger people, like my dad.

Fifty-eight years old; that's not old.

In fact, Alzheimer's is increasingly
hitting people who are in their 30s

and in their 40s.

And if you think you're immune
because you don't have the gene

or somehow it's genetically passed on,

yes, there are Alzheimer's diseases
that are genetically passed on,

but in this case, my father was the first
in our family to have it.

At the time, I was just
graduating college,

and I was just starting
a journalism career.

My father was actually
one of my first interview subjects,

and I spent a lot of time
talking to him about his wonderful life.

So, fast forward 10 years,
and my parents had retired to Florida,

and my mother was my father's
primary caregiver,

and I was here in Washington,
and I was living my dream job.

I was writing for Time magazine,
I was flying around on Air Force One,

I was covering campaigns,

I was covering
the Middle East and conflicts;

it was an amazing, amazing job.

And my mother suddenly died.

And, you know, this happens
to 42% of caregivers,

that they will end up dying
before the person they care for

because the stress is so great.

So I flew down to Florida,

and I became my father's
primary caregiver.

I brought him up to Washington,

and I thought: "OK,
I'm going to take care of Dad."

And I brought him into my house,

and then I realized quickly
I could not take care of Dad.

So, he would walk my dog,

and five panicked hours later,
the police would find him four miles away.

Or he would try to cook,

and he was used to
an electric stove in Florida,

and I would come home
to a house full of gas.

So, it was clear to me pretty rapidly
I could not take care of my dad,

and instead, I had to put him into a home.

I don't know how many of you have ever
been to an assisted living facility, but -

I thought the worst day
of my life up until that point

had been the day my mother died.

The worst day of my life was actually

the day I put my father
into an assisted living facility,

and my sweet, wonderful,

would-not-harm-a-fly,
gregarious Australian father

slapped me across the face
and told me I was imprisoning him.

And you can imagine my state of mind
when I then was asked by the facility

to go and fill out a 20-page
questionnaire about his life.

And I'm sitting in this room,
basically crying, and thinking,

"No one is ever going to read

this chicken scrawl of 20 pages
of handwritten data points

for the 150 residents they have here."

And so, instead, I handed in
the form and said,

"Look, I'm just going to write down
his story for you."

They were like: " ... Okay."

And I'm like, no, look, I've got it;
I'm a journalist, I can do this.

So, I wrote down his story
for them, and they loved it.

It completely transformed his care.

They remembered the story; his caregivers
would tell each other about it.

Two of his caregivers were from Ethiopia,

and he'd spent eight years
doing development work in Ethiopia,

and they had no idea,
and they were so excited.

So they would sit for hours and show him
photos of Emperor Haile Selassie,

with whom my father worked,

or photos of Addis Ababa, and he loved it
because he would remember -

remember, Alzheimer's is regressive -

he would remember Africa,
but he didn't remember me -

or even my mom at that point.

Alzheimer's is a disease that affects
11 million people in America today.

It's a huge, huge, huge disease,

and there is actually
no cure for it, obviously.

And there's billions and billions
of dollars that go into finding a cure,

but actually, I think, let's be frank:
we're never actually going to find a cure

in time for the baby boomer
generation when they age out.

There will actually be three times
as many people with Alzheimer's

by the year 2030 than there are now -

Alzheimer's and dementia, I should say.

So that's almost 30 million people
that will have it.

And so what we have to start focusing on

is actually finding better ways
to care for these people.

If you've ever been to a facility,
these places have no community.

They're really isolating;
they're really depressing.

And so, for me, writing his story down
really helped people know him.

It created a little bit of community.

And so I did this crazy thing:

Four months ago, I left
my job at Time magazine,

my dream job, which I'd always wanted
and had been there for a decade,

and I started a company called MemoryWell.

And we now have more than 250 journalists,

and we write the life stories of those
living with Alzheimer's and dementia.

And people have found
all these great uses for them:

they put them up in the homes,

they'll tack them up so people
can read them coming through

so that they can know each other.

And on the website,

they add their favorite music
and videos and arts and readings,

and that way people can
really communicate with them,

can have this whole sort of toolbox
of things with which to engage them.

And I love it because I know

that in the last years when I was
visiting my father in his home,

he didn't know me from anybody.

And so he would be like,

"Who's this weird girl walking around
with her dog, following me?"

And I would grab my iPhone,
and I would play him the Beatles,

and he would recognize the Beatles,

and I would be like,
"Yeah, Dad, it's the Beatles."

And so he'd come and sit with me,

and then I would maybe play him some MASH,
which was his favorite TV show,

or then I'd start showing him
photos of my grandparents

and talking about their lives.

How many you have seen
The Notebook, the movie?

So, a fair number of people.

So, for me, this was like
writing his story down,

and being able to sit and engage with him,

whether it was me or his caregivers
or other people, and really know him

was like my own personal version
of The Notebook.

And for the few minutes
that it brought him back to me,

it was like a gift that he would come back
and be a little bit of my dad.

And I felt, throughout my entire
struggle working with him

in the five years that he was in a home
until he died last year,

that I had to reinvent the wheel
to figure out how to engage him,

how to get people to know him,
to understand who he was,

and that was really painful.

And so I wanted people to not have to go
through that process that I went through.

Winston Churchill once said,

"The future is unknowable,
but the past gives us hope."

I love that quote because, as a journalist
writing these life stories now,

even though I've used my talents before
for the idea of chronicling the powerful,

chronicling the rich, chronicling
the infamous and famous,

I now get to use my talents
to really effect change on a micro level,

and I get to see that change all the time
in the way people form community

and give people voices
who don't have any voice right now.

And so, for us, being able to form
a frontline of history is really exciting,

you know, the idea that if we collect
enough of these stories,

thousands of these stories
that would otherwise be lost,

you could have stories of Korean War vets
and firsthand accounts of that,

or people who were at Woodstock,
or other kinds of great stories.

And for us, our mission really is

building community and giving voice
to the voiceless and building empathy,

one voice at a time, one story at a time.

Thank you.

(Applause)