00:00:14.723 --> 00:00:17.350
[music]

00:00:24.441 --> 00:00:26.151
LENNY WHITE: It's all
the small little things...

00:00:26.317 --> 00:00:27.736
that make a massive difference.

00:00:28.028 --> 00:00:30.280
- Whoa!
- Yeah!

00:00:30.864 --> 00:00:32.657
KARIN DIAMOND:
Palm to palm, breathe in.

00:00:33.074 --> 00:00:34.784
[inhales deeply]

00:00:38.663 --> 00:00:40.123
Mr. MacDonald?

00:00:40.248 --> 00:00:42.542
We know that dementia
is not part of old age...

00:00:42.667 --> 00:00:44.252
dementia is a disease.

00:00:46.212 --> 00:00:49.507
There are ways to improve
symptoms around dementia.

00:00:50.341 --> 00:00:52.886
There are ways to target
risk factors...

00:00:53.011 --> 00:00:54.846
before developing symptoms.

00:00:55.013 --> 00:00:56.598
[laughter]

00:00:56.723 --> 00:00:59.768
I think we have a tendency
to look at older people...

00:00:59.893 --> 00:01:01.728
with what they cannot do.

00:01:01.853 --> 00:01:03.354
[woman exclaiming,
all cheering]

00:01:04.022 --> 00:01:08.443
What we want to change
is this negative narrative...

00:01:08.568 --> 00:01:09.569
change our mindset.

00:01:09.694 --> 00:01:11.237
ALL: Yes!

00:01:11.362 --> 00:01:14.199
(piano music)

00:01:32.592 --> 00:01:35.887
KARIN: Every one of us
has a story to tell...

00:01:36.054 --> 00:01:39.390
and some of us
need our story heard.

00:02:00.537 --> 00:02:03.206
[people chattering]

00:02:14.425 --> 00:02:17.804
WALTER DAWSON: My dad and I,
we were very close.

00:02:19.180 --> 00:02:21.599
What we kinda did together,
is he read a lot to me...

00:02:21.724 --> 00:02:25.770
as a child, and that
was a real happy memory...

00:02:25.895 --> 00:02:27.856
that I think about a lot.

00:02:29.107 --> 00:02:30.567
- How old was I here?
- CLARA: Three.

00:02:30.692 --> 00:02:33.111
Oh, wow.
[laughing]

00:02:34.237 --> 00:02:35.488
CLARA: Walter as a little boy...

00:02:35.613 --> 00:02:37.907
was the apple
of his father's eye.

00:02:38.908 --> 00:02:41.244
We enjoyed a lot
of things together.

00:02:45.623 --> 00:02:47.542
WALTER: I felt quite lucky
in the sense...

00:02:47.667 --> 00:02:49.460
that since he was older,

00:02:49.586 --> 00:02:52.338
he was retired
and he was kind of around.

00:02:52.463 --> 00:02:54.465
Not every child
is fortunate enough

00:02:54.591 --> 00:02:58.219
to have both their parents
there constantly.

00:02:59.053 --> 00:03:02.390
Books were his, like,
biggest interest...

00:03:02.515 --> 00:03:04.809
and kind of passion...

00:03:04.934 --> 00:03:06.978
both in terms
of collecting them...

00:03:07.145 --> 00:03:09.105
but also in terms
of the knowledge

00:03:09.230 --> 00:03:11.149
that they contained, right?

00:03:14.819 --> 00:03:16.905
The changes were subtle.

00:03:17.030 --> 00:03:18.198
You know,
he would say things like...

00:03:18.323 --> 00:03:19.657
"Oh, you know,
that one person.

00:03:19.824 --> 00:03:20.950
What's her name,
what's his name?"

00:03:21.075 --> 00:03:22.785
You know, and struggling...

00:03:22.911 --> 00:03:25.455
with some words
and sentences.

00:03:27.415 --> 00:03:29.250
CLARA: He'd drive into town,
and then he...

00:03:29.375 --> 00:03:31.461
he would tell me
that he got lost.

00:03:33.463 --> 00:03:34.839
[sighs]

00:03:34.964 --> 00:03:37.342
I really began to think...

00:03:37.467 --> 00:03:40.511
there might be something
the matter.

00:03:42.013 --> 00:03:44.641
[kids screaming playfully]

00:03:48.186 --> 00:03:50.313
WOMAN: Get ready!

00:03:50.438 --> 00:03:52.273
WALTER:
When I was eight years old...

00:03:52.398 --> 00:03:55.026
we had planned a family trip
to Disneyland...

00:03:55.193 --> 00:03:56.861
in Southern California.

00:03:58.029 --> 00:04:02.700
My dad would wander a lot,
and he got lost pretty quickly.

00:04:04.244 --> 00:04:07.163
And we couldn't find him again
for several hours.

00:04:08.957 --> 00:04:10.375
[fireworks whistling]

00:04:10.541 --> 00:04:13.127
And then that evening,
we returned to our hotel...

00:04:13.253 --> 00:04:16.047
and that was kind of where
things really got quite...

00:04:16.172 --> 00:04:18.216
really bad
really fast.

00:04:20.468 --> 00:04:23.888
My dad became
extremely agitated...

00:04:24.013 --> 00:04:26.849
and was convinced
there was something...

00:04:26.975 --> 00:04:31.771
really terrible about to happen
to everybody in the hotel.

00:04:31.896 --> 00:04:33.064
[fireworks booming]

00:04:33.189 --> 00:04:34.357
He left the room...

00:04:34.482 --> 00:04:36.317
and was running
down the halls...

00:04:36.442 --> 00:04:38.486
yelling, banging on doors...

00:04:38.611 --> 00:04:40.655
trying to get
people's attention...

00:04:40.780 --> 00:04:42.115
that they needed to get out.

00:04:42.240 --> 00:04:44.534
[fireworks continue whistling,
booming]

00:04:45.743 --> 00:04:48.329
It was that moment
that really kind of....

00:04:48.454 --> 00:04:50.915
we knew, and I knew
that things...

00:04:51.040 --> 00:04:52.750
were not ever
gonna be the same.

00:04:56.337 --> 00:04:58.798
He was not maybe the one
to choose.

00:04:58.923 --> 00:05:02.510
- He-- he crushed Joey.
- He did?

00:05:06.431 --> 00:05:09.475
WALT’S  DAD:  Hello, look here!
- Hi.

00:05:09.600 --> 00:05:12.937
I’ll spoil you. All the legs
I’ve got...[nonsensical speech]

00:05:13.062 --> 00:05:14.939
CLARA: He worried about us.

00:05:15.106 --> 00:05:17.650
One time, he told me
that he knew...

00:05:17.775 --> 00:05:19.736
that he wasn't right.

00:05:19.861 --> 00:05:22.613
So what are you now,
five and a half?

00:05:22.739 --> 00:05:24.449
Mm, eleven.

00:05:24.615 --> 00:05:27.118
- Yesterday was my birthday.
- 11 years!

00:05:27.285 --> 00:05:28.619
CLARA: He was so worried
about it.

00:05:28.786 --> 00:05:30.538
- How's the little fella?
- CLARA: He said he felt...

00:05:30.663 --> 00:05:32.999
like we were on the edge
of a cliff.

00:05:35.585 --> 00:05:37.086
Throw-- throw your ball, Cecil.

00:05:37.211 --> 00:05:39.297
Here, Cecil.
No.

00:05:39.464 --> 00:05:41.883
- Don't push me.
- No, no, I'm not.

00:05:42.925 --> 00:05:45.053
CLARA: The decision
to place Cecil in care...

00:05:45.178 --> 00:05:47.638
was really hard.

00:05:47.805 --> 00:05:49.557
Throw it to him.

00:05:49.682 --> 00:05:51.017
YOUNG WALTER: Thank you.

00:05:51.142 --> 00:05:54.687
He just seems
to be fading away...

00:05:54.812 --> 00:05:57.231
and it's really sad.

00:06:01.527 --> 00:06:02.695
Bye.

00:06:02.820 --> 00:06:06.699
All these good for nothing
[nonsensical speech]

00:06:06.824 --> 00:06:08.659
YOUNG WALTER: It's sad to see
him in a different place...

00:06:08.826 --> 00:06:13.331
and that he's not at home,
and he wants to come home.

00:06:13.456 --> 00:06:16.209
And we want him to come home,
but he can't.

00:06:16.334 --> 00:06:18.544
- We better go.
- Well, see you.

00:06:20.421 --> 00:06:22.298
- We'll be seeing you.
- Won't be that long now.

00:06:22.423 --> 00:06:24.967
- Okay.
- See you soon, okay?

00:06:25.093 --> 00:06:27.512
- Gotta close the door.
- Okay.

00:06:29.764 --> 00:06:32.392
[music]

00:06:41.150 --> 00:06:43.694
WALTER:
We don't have a cure...

00:06:43.861 --> 00:06:47.407
or a real disease-modifying
drug or treatment.

00:06:50.368 --> 00:06:51.994
It's very scary.

00:06:52.954 --> 00:06:56.290
I think it's also scary 'cause
it's about our brain, right?

00:06:56.416 --> 00:06:59.335
It's about our-- our identity,
and ourself.

00:07:01.212 --> 00:07:03.297
[dog barking]

00:07:13.891 --> 00:07:15.518
JILL HARMON: Look at this!

00:07:18.312 --> 00:07:20.022
Yeah.

00:07:20.148 --> 00:07:23.401
For a long time,
I did not tell people...

00:07:23.568 --> 00:07:26.571
that Don had dementia...

00:07:26.696 --> 00:07:30.408
because I felt that
it would discredit him.

00:07:31.951 --> 00:07:35.746
And in truth, I think it was
also me being uncomfortable.

00:07:35.913 --> 00:07:37.582
Here we go.

00:07:37.748 --> 00:07:42.587
Don's voice and ability
to speak has been affected.

00:07:43.588 --> 00:07:45.631
But then, as time went on...

00:07:45.756 --> 00:07:48.551
and we've been in
a long, long journey...

00:07:48.676 --> 00:07:51.929
I found the ability
to share that with people...

00:07:52.054 --> 00:07:55.057
and just said it was a--
it's like-- was a part of him...

00:07:55.183 --> 00:07:57.894
that it wasn't just who he is.

00:08:04.025 --> 00:08:06.277
He was always so active.

00:08:08.112 --> 00:08:09.739
Who painted that?

00:08:10.656 --> 00:08:13.409
I'll take this off
so you can see better.

00:08:13.534 --> 00:08:17.455
The Sierras.
Blayney Meadows.

00:08:37.642 --> 00:08:39.644
It's your chaps you made.

00:08:39.977 --> 00:08:43.397
Feel it?
How's that feel?

00:08:43.898 --> 00:08:45.316
Soft?

00:08:50.821 --> 00:08:53.282
A point that I really
want to strongly make...

00:08:53.407 --> 00:08:55.785
is that the person
is still there.

00:08:56.827 --> 00:09:00.331
The context can be different,
the behavior can be different...

00:09:00.498 --> 00:09:02.166
but there's a human being
there.

00:09:02.333 --> 00:09:04.377
There is still a person there.

00:09:12.009 --> 00:09:14.470
HELEN ROCHFORD-BRENNAN:
It's like waking up...

00:09:14.595 --> 00:09:18.641
with this fog, gray fog
that is never going to lift.

00:09:19.976 --> 00:09:22.687
It's like a heavy weight that
you're trying to remember...

00:09:22.812 --> 00:09:25.022
and you can't remember,
and you're trying to remember...

00:09:25.189 --> 00:09:27.275
and you can't remember.

00:09:27.400 --> 00:09:29.068
You think, "I just wish
it would lift...

00:09:29.193 --> 00:09:33.531
for just one-- five minutes,
that I could just remember."

00:09:35.575 --> 00:09:38.411
[water softly lapping]

00:09:40.371 --> 00:09:42.373
In rural Ireland,
one of the things...

00:09:42.540 --> 00:09:46.419
that we have to be
very careful of is loneliness.

00:09:47.545 --> 00:09:50.715
I isolated myself.
I didn't tell anybody.

00:09:51.549 --> 00:09:53.551
I didn't talk about it,
because I was afraid...

00:09:53.676 --> 00:09:55.094
to talk about it,
because I thought everybody...

00:09:55.219 --> 00:09:57.597
would think I was mentally ill,
I was nuts.

00:09:58.889 --> 00:10:01.892
My diagnosis
was 65 miles from here.

00:10:03.644 --> 00:10:05.563
Got out into the car,
and I just cried and cried...

00:10:05.688 --> 00:10:07.106
because I thought,
how am I gonna go home...

00:10:07.231 --> 00:10:08.566
and tell Sean?

00:10:08.691 --> 00:10:10.443
How am I going to tell him
about, you know...

00:10:10.568 --> 00:10:12.445
all the memories
we've banked along the way...

00:10:12.570 --> 00:10:15.656
and all the plans we had
for the future are gone?

00:10:18.159 --> 00:10:20.578
I talked to Sean,
and it was very devastating.

00:10:20.703 --> 00:10:23.539
It was devastating,
and then I had to talk to...

00:10:23.664 --> 00:10:25.291
Martin came home,
and we talked...

00:10:25.416 --> 00:10:26.667
I talked to Martin myself.

00:10:26.792 --> 00:10:28.961
We sat at
the kitchen table and...

00:10:32.590 --> 00:10:34.300
[clicks tongue]

00:10:35.509 --> 00:10:38.346
I don't remember
the conversation...

00:10:38.471 --> 00:10:41.057
but I certainly remember
the pain of it.

00:10:44.310 --> 00:10:46.312
There was nobody
for me to talk to.

00:10:47.647 --> 00:10:49.273
If there was just
somebody there...

00:10:49.398 --> 00:10:50.775
that could have said to me...

00:10:50.941 --> 00:10:52.777
"This is how you tell
your children...

00:10:52.943 --> 00:10:54.654
This is how
you tell your husband...

00:10:54.779 --> 00:10:56.614
We are here to support you."

00:10:56.739 --> 00:11:00.242
There was no sign posting,
there was no pathway of care.

00:11:17.760 --> 00:11:21.263
WALTER: People who have worked
their entire lives...

00:11:21.514 --> 00:11:23.724
and have saved
and bought a home...

00:11:25.434 --> 00:11:28.145
all that kind of goes
out the window really fast.

00:11:31.982 --> 00:11:35.111
CLARA: We worked really hard
to save for Walter's education.

00:11:36.529 --> 00:11:37.863
You know who that is?

00:11:37.988 --> 00:11:40.449
CECIL: Did you come back
from tomorrow?

00:11:41.909 --> 00:11:45.705
CLARA: We had to spend it down,
spend down his savings.

00:11:48.040 --> 00:11:50.167
WALTER: You know,
after three months...

00:11:50.334 --> 00:11:53.295
we were basically broke, right?

00:11:57.925 --> 00:12:01.011
There was this really, like,
massive change to our life...

00:12:01.137 --> 00:12:04.014
and you know,
it felt incredibly helpless.

00:12:07.017 --> 00:12:09.687
And then there's a huge segment
of the population...

00:12:09.812 --> 00:12:13.858
that doesn't have
any resources, right?

00:12:14.900 --> 00:12:17.695
[siren wailing
in distance]

00:12:18.696 --> 00:12:21.115
When you have
a population aging...

00:12:21.240 --> 00:12:24.660
not just the United States,
but in all countries...

00:12:24.785 --> 00:12:27.580
you also have a rapid increase
in the number of people...

00:12:27.705 --> 00:12:30.040
who will be living
with dementia.

00:12:31.375 --> 00:12:35.212
So, this is going
to truly be a global problem.

00:12:36.213 --> 00:12:39.008
How do you think about
those future needs?

00:12:42.261 --> 00:12:44.305
JORGE LLIBRE GUERRA: What we
are seeing in Latin America

00:12:44.430 --> 00:12:46.515
is actually that the rates of...

00:12:46.640 --> 00:12:48.142
I mean, the prevalence
for dementia...

00:12:48.267 --> 00:12:49.435
and incidents from dementia...

00:12:49.560 --> 00:12:51.061
it's increasing
in our countries.

00:12:53.314 --> 00:12:57.860
Pakistan has 12 million people
who are over 65 years of age...

00:12:57.985 --> 00:13:02.239
and it is going to be around
45 million in 2050.

00:13:03.324 --> 00:13:06.202
Even if you conduct a research
about some kind of a drug...

00:13:06.327 --> 00:13:08.579
how many people can afford
that drug in Pakistan...

00:13:08.704 --> 00:13:10.956
even after the research
is successful?

00:13:13.542 --> 00:13:15.753
Our healthcare systems
are not read...

00:13:15.878 --> 00:13:17.505
to deal with these populations.

00:13:17.630 --> 00:13:20.299
So, that will have
a huge impact...

00:13:20.424 --> 00:13:21.926
in our economy.

00:13:22.885 --> 00:13:24.595
CLARA: Throw it to him.

00:13:25.429 --> 00:13:26.847
WALTER: Thank you.

00:13:26.972 --> 00:13:30.601
Financially, it absolutely
devastates a family.

00:13:32.812 --> 00:13:36.106
I wrote a lot of letters
to different senators.

00:13:38.859 --> 00:13:41.487
I asked my mom, I said,
"Can I write a letter?"

00:13:44.657 --> 00:13:46.867
I wrote to President
Bill Clinton...

00:13:47.076 --> 00:13:51.497
to Hillary Clinton,
to Senator Edward Kennedy...

00:13:51.622 --> 00:13:54.124
to magazines, and newspapers...

00:13:54.250 --> 00:13:57.002
and authors,
and movie stars too.

00:13:58.462 --> 00:14:01.215
YOUNG WALTER: [on recording]
Dear National Public Radio...

00:14:01.340 --> 00:14:03.634
my name is Walter Dawson.

00:14:03.759 --> 00:14:05.886
I am 10 years old.

00:14:06.011 --> 00:14:09.014
My father
has Alzheimer's disease.

00:14:09.139 --> 00:14:12.685
"I hope more will be done
to fight Alzheimer's disease.

00:14:12.810 --> 00:14:14.687
"It has been really hard
for my mother and me

00:14:14.812 --> 00:14:18.440
"the past eight months
since my father got sick.

00:14:18.566 --> 00:14:20.818
"I miss my father very much.

00:14:20.943 --> 00:14:23.571
[with young Walter]
Sincerely, Walter Dawson."

00:14:23.696 --> 00:14:26.532
[music]

00:14:33.289 --> 00:14:37.751
My letter on air was almost
like a-- a light switch...

00:14:37.877 --> 00:14:40.004
being flipped,
where there was a real change...

00:14:40.170 --> 00:14:43.007
in interest and attention
to what I was trying to do.

00:14:44.008 --> 00:14:47.052
You know, a year or so
after I wrote my first letter...

00:14:47.177 --> 00:14:50.222
I found myself on a plane
to Washington, D.C.

00:14:56.604 --> 00:14:58.063
CLARA: Speak up clearly,
these people...

00:14:58.188 --> 00:14:59.940
the people want to hear
what you've got to say.

00:15:00.065 --> 00:15:00.816
Okay.

00:15:00.941 --> 00:15:02.026
- Okay?
- Okay.

00:15:02.151 --> 00:15:03.611
- Be brave.
- All right.

00:15:03.736 --> 00:15:04.904
WALTER:
I just remember walking in,

00:15:05.029 --> 00:15:06.572
and all these cameras,
you know,

00:15:06.697 --> 00:15:08.073
the pictures being taken.
[cameras clicking]

00:15:08.198 --> 00:15:09.950
MAN: Walter Dawson,
we appreciate you...

00:15:10.075 --> 00:15:12.036
- being here this morning.
- Thank you.

00:15:12.202 --> 00:15:15.372
WALTER: Health reform
and long-term service...

00:15:15.497 --> 00:15:18.250
and support system
was all on the agenda.

00:15:18.375 --> 00:15:20.878
That's what everybody in
the country was talking about.

00:15:21.003 --> 00:15:23.672
There should be a program
for the whole country...

00:15:23.797 --> 00:15:24.965
that covers everyone.

00:15:25.090 --> 00:15:26.717
MAN: Walter, thank you.

00:15:26.884 --> 00:15:30.054
[applause]

00:15:30.179 --> 00:15:32.806
[music]

00:15:34.433 --> 00:15:37.603
WALTER: That was a really,
like, amazing moment.

00:15:38.729 --> 00:15:40.731
Now, people are hearing
our story.

00:15:40.856 --> 00:15:43.108
It's gonna happen.
I was convinced, I think,

00:15:43.233 --> 00:15:47.655
that there was gonna be
a real radical change.

00:15:51.492 --> 00:15:56.580
The health reform process
kind of fell apart...

00:15:56.747 --> 00:15:58.040
a few months after that...

00:15:58.999 --> 00:16:02.586
and there was not
any significant change...

00:16:02.836 --> 00:16:04.755
in this country.

00:16:14.515 --> 00:16:15.975
JILL: There you go.

00:16:16.642 --> 00:16:19.478
Roll over here,
baby doll, okay?

00:16:21.981 --> 00:16:24.274
I've gotta test
your blood sugar.

00:16:25.526 --> 00:16:27.111
[beeping]

00:16:34.994 --> 00:16:38.539
God bless you, pop-pops.
God bless you.

00:16:39.164 --> 00:16:41.041
From one day to the other...

00:16:41.375 --> 00:16:44.128
you don't know what
they're gonna be like...

00:16:44.253 --> 00:16:46.714
or what changes
are gonna take place.

00:16:46.839 --> 00:16:48.382
Okay, buddy.

00:16:50.759 --> 00:16:52.302
I have a counselor.

00:16:52.428 --> 00:16:56.348
I would say to her,
"It's not gonna go away, is it?

00:16:56.473 --> 00:16:59.893
I can't fix it, can I?"
She'd say no.

00:17:00.019 --> 00:17:01.979
I had-- that's what
I had to come to terms with...

00:17:02.146 --> 00:17:04.523
is I couldn't fix it.

00:17:04.648 --> 00:17:06.900
[clock ticking]

00:17:08.027 --> 00:17:10.029
I have had some
of the lowest points...

00:17:10.154 --> 00:17:12.448
I've ever felt in my life.

00:17:13.991 --> 00:17:15.159
I can't stay there...

00:17:15.325 --> 00:17:17.119
because how can I
be there for him...

00:17:17.244 --> 00:17:19.621
and how can I take care
of myself?

00:17:20.414 --> 00:17:24.418
You've gotta rest,
'cause tomorrow we start again.

00:17:32.092 --> 00:17:34.219
It's only been eight months
since he couldn't...

00:17:34.762 --> 00:17:36.180
couldn't walk.

00:17:37.264 --> 00:17:40.517
It’s been very hard
because I was so used...

00:17:40.684 --> 00:17:43.604
to putting him in the car,
and we'd go to the mountains...

00:17:43.729 --> 00:17:46.732
and we'd enjoy the mountains,
and we'd get in the kayak.

00:17:47.858 --> 00:17:51.403
And we'd climb up the stairs
to our bedroom at the cabin.

00:17:54.740 --> 00:17:56.700
We've been together 39 years.

00:17:56.825 --> 00:17:59.328
It'll be 40 years
Valentine's Day.

00:18:00.370 --> 00:18:03.207
We met as teenagers at a dance.

00:18:04.249 --> 00:18:06.794
I'm like foolishly in love
with him.

00:18:06.919 --> 00:18:09.755
[music]

00:18:28.065 --> 00:18:29.942
[birds chirping]

00:18:30.067 --> 00:18:32.903
I don't dwell on it,
but I really miss him.

00:18:36.740 --> 00:18:38.242
To lose some part
of your heart...

00:18:38.408 --> 00:18:41.453
which he is to me,
is really hard.

00:18:51.588 --> 00:18:53.423
Good morning.

00:18:57.427 --> 00:18:59.930
It takes other people
to help me as well.

00:19:00.764 --> 00:19:04.268
You know, I couldn't just keep
going and going and going.

00:19:04.393 --> 00:19:07.938
Thank you for always eating
everything I make for you.

00:19:08.063 --> 00:19:10.440
JILL:
We've been in this 13 years.

00:19:18.115 --> 00:19:22.161
- That is...
- Oh, you wanted my other hand.

00:19:24.037 --> 00:19:26.707
Oh, you're squeezing 'em.

00:19:26.832 --> 00:19:29.042
- Mm-hmm.
- Mm-hmm.

00:19:29.168 --> 00:19:31.545
You're squeezing 'em
'cause you love me.

00:19:34.715 --> 00:19:36.633
I know how that gets.

00:19:36.800 --> 00:19:37.968
You know how that is.

00:19:38.093 --> 00:19:40.220
Some-- some...

00:19:41.597 --> 00:19:45.309
[stammering indistinctly]

00:19:45.475 --> 00:19:47.561
- Actually...
- Actually!

00:19:47.686 --> 00:19:51.607
- That is...
- You said "actually?"

00:19:51.732 --> 00:19:54.484
You said "actually."

00:19:57.279 --> 00:19:59.740
I'm going to lose him.

00:20:01.825 --> 00:20:03.493
I can't save him.

00:20:06.997 --> 00:20:09.041
And so, what I really
have to do...

00:20:09.166 --> 00:20:13.670
is just focus
on what we can do.

00:20:14.296 --> 00:20:16.840
Appreciate him, enjoy him...

00:20:17.674 --> 00:20:23.222
and just continue life
as long-- long as we can.

00:20:25.849 --> 00:20:28.518
[music]

00:20:40.280 --> 00:20:43.742
LEA GRINBERG: Our brain
is very resistant to disease...

00:20:44.576 --> 00:20:46.370
so it takes many years...

00:20:46.536 --> 00:20:49.456
for these neurodegenerative
diseases...

00:20:49.581 --> 00:20:54.378
to accumulate in the brain
and to spread up to a point...

00:20:54.544 --> 00:20:56.505
that people will start
to have symptoms...

00:20:56.630 --> 00:20:57.923
like memory problems.

00:20:58.757 --> 00:21:00.884
This is an amyloid plaque.

00:21:01.009 --> 00:21:04.012
This is the plaques that we see
in Alzheimer's disease.

00:21:05.013 --> 00:21:06.515
LAWLOR: The toxic protein
called amyloid...

00:21:06.640 --> 00:21:09.601
is progressively deposited
in the brains of people...

00:21:09.726 --> 00:21:11.770
and this leads
to nerve cell damage...

00:21:11.895 --> 00:21:13.272
and disconnections.

00:21:13.397 --> 00:21:16.233
And later on,
the symptoms of dementia...

00:21:16.400 --> 00:21:18.652
where there's functional loss.

00:21:18.777 --> 00:21:22.155
[MILLER]: So, cardiovascular
disease, hypertension...

00:21:22.281 --> 00:21:25.409
diabetes, obesity...

00:21:25.534 --> 00:21:28.620
head trauma,
lack of literacy...

00:21:28.745 --> 00:21:31.415
these are all very potent
risk factors...

00:21:31.540 --> 00:21:34.584
for degenerative disease
in elders.

00:21:35.544 --> 00:21:37.629
BRIAN:
Now, that's the bad news.

00:21:37.754 --> 00:21:39.339
However, there is good news.

00:21:40.424 --> 00:21:44.094
[MILLER]: We began to realize
that about 30-40%...

00:21:44.469 --> 00:21:47.597
of dementia in elders
could have been prevented.

00:21:49.641 --> 00:21:52.185
[ROBERTSON]: Brain health
is quite a new concept.

00:21:52.311 --> 00:21:55.105
The idea-- we know
what heart health is.

00:21:55.355 --> 00:21:59.484
So, we know that we have
about 40% of the rate...

00:21:59.609 --> 00:22:03.196
of heart attacks now
than we did 50 years ago...

00:22:03.739 --> 00:22:07.117
not largely because of advances
in high tech medicine...

00:22:07.534 --> 00:22:11.413
but because they worked out
what the risk factors were...

00:22:11.788 --> 00:22:14.416
and they got people
to change their behavior.

00:22:16.835 --> 00:22:18.962
[DR.]: What can we do to prevent
How can we make sure people...

00:22:19.087 --> 00:22:20.630
are getting access to care?

00:22:20.756 --> 00:22:22.924
That we have stroke prevention,
hypertension is treated...

00:22:23.050 --> 00:22:26.720
people are active, both
physically and cognitively.

00:22:26.845 --> 00:22:29.473
[people chattering]

00:22:30.807 --> 00:22:32.642
[LAWLOR]: I think the problem
up until now...

00:22:32.809 --> 00:22:34.144
and I've been
working as a doctor...

00:22:34.811 --> 00:22:37.397
dealing with patients--
is that we haven't...

00:22:37.522 --> 00:22:39.649
really been able
to translate this evidence...

00:22:39.816 --> 00:22:41.485
into policy and practice.

00:22:43.487 --> 00:22:45.197
We really believe
that one of the big gaps...

00:22:45.322 --> 00:22:47.741
in terms of brain health
and dementia prevention...

00:22:47.866 --> 00:22:50.160
is the lack of leadership.

00:22:50.327 --> 00:22:52.621
[people chattering]

00:22:58.168 --> 00:22:59.628
[LAWLOR]:  The Global
Brain Health Institute...

00:22:59.753 --> 00:23:02.798
was formed to tackle
the problem of brain health...

00:23:02.923 --> 00:23:06.343
and lead dementia prevention
worldwide.

00:23:07.386 --> 00:23:09.971
JORGE:
If we want to find a solution...

00:23:10.097 --> 00:23:12.182
we have to work
in collaboration.

00:23:12.307 --> 00:23:14.309
So, having multiple
collaborations...

00:23:14.434 --> 00:23:17.270
with multiple researchers,
multiple countries...

00:23:17.396 --> 00:23:20.690
I think that's the only
thruway to find a solution...

00:23:20.816 --> 00:23:22.192
to find a cure.

00:23:22.317 --> 00:23:24.403
Like, it would be important
for someone...

00:23:24.528 --> 00:23:26.696
someone like me
as a neuropsychologist...

00:23:26.822 --> 00:23:29.825
to collaborate with someone who
works with health economics...

00:23:29.950 --> 00:23:33.578
so that we can convince
policy makers...

00:23:33.703 --> 00:23:38.542
about the need to--
to invest in dementia care...

00:23:38.708 --> 00:23:40.710
within-- within our countries.

00:23:40.877 --> 00:23:43.505
[music]

00:23:45.424 --> 00:23:47.384
My name is Shamiel McFarlane.

00:23:47.551 --> 00:23:51.721
I'm an Atlantic Fellow
for Equity in Brain Health.

00:23:51.888 --> 00:23:53.807
Mr. McDonald?

00:23:53.932 --> 00:23:56.810
I want to start
the first home-based...

00:23:56.935 --> 00:23:59.563
primary care program
specifically tailored...

00:23:59.729 --> 00:24:02.732
for cognitively-impaired
isolated older adults...

00:24:02.899 --> 00:24:04.651
in Jamaica.

00:24:04.776 --> 00:24:07.571
The memory never so good.
- No.

00:24:07.737 --> 00:24:10.699
I always blame it
on maybe the old age.

00:24:10.824 --> 00:24:14.369
- Not the best. Not the best.
- Yeah. All right.

00:24:14.494 --> 00:24:16.413
[SHAMIEL]: Dementia
and cognitive impairment...

00:24:16.580 --> 00:24:19.332
aren't really in the forefront.

00:24:19.458 --> 00:24:22.043
Having this program
will teach doctors...

00:24:22.169 --> 00:24:25.255
that this is something
that we need to check for.

00:24:26.298 --> 00:24:28.550
A physician
and a social worker...

00:24:28.675 --> 00:24:31.344
visiting every four weeks...

00:24:31.470 --> 00:24:33.763
and seeing
if this makes a difference...

00:24:33.930 --> 00:24:37.476
with their quality of life
indicators.

00:24:40.770 --> 00:24:43.815
One thing we wanted was
a family album, so here it is.

00:24:43.940 --> 00:24:46.443
SHAMIEL: My grandmother
had dementia.

00:24:47.277 --> 00:24:49.738
She was-- she was,
you know, the matriarch.

00:24:49.863 --> 00:24:51.781
MAN:
Here is your grandmother here.

00:24:51.907 --> 00:24:53.450
This is when she actually
lived in Jamaica.

00:24:53.617 --> 00:24:54.951
Grandma in her nurse's uniform.

00:24:55.619 --> 00:24:57.746
And this is Mom
in her nurse's uniform.

00:24:58.246 --> 00:25:01.750
She definitely had
an impact on me.

00:25:01.875 --> 00:25:03.752
She passed
when I was in med school.

00:25:08.131 --> 00:25:09.633
Anything else going on?

00:25:09.758 --> 00:25:11.593
SHAMIEL: For those persons
who are isolated...

00:25:11.718 --> 00:25:16.389
who do not have benefit
of family, social support...

00:25:16.515 --> 00:25:18.433
they'll be able to get
the help that they need.

00:25:24.397 --> 00:25:26.107
[DR. LAWLOR]: The idea is that
if you can develop...

00:25:26.233 --> 00:25:28.485
these interventions
on a pilot basis...

00:25:28.610 --> 00:25:31.821
and if they're effective,
then they could be scaled up.

00:25:36.743 --> 00:25:39.162
DR. VALCOUR: We know that
the largest number...

00:25:39.329 --> 00:25:41.373
of dementia cases
around the world...

00:25:41.498 --> 00:25:43.500
will be occurring
in low-middle-income countries..

00:25:43.625 --> 00:25:46.169
because those populations
are aging.

00:25:46.294 --> 00:25:47.837
It's critically important
for us to address...

00:25:48.004 --> 00:25:50.048
a public health approach
to preventing dementia...

00:25:50.173 --> 00:25:51.633
in any way we can.

00:25:54.803 --> 00:25:58.640
We were able to go into
the Za'atari refugee camp...

00:25:58.765 --> 00:26:02.852
in Jordan, about 10 kilometers
away from Syria...

00:26:03.019 --> 00:26:05.188
to try to understand
psychological health...

00:26:05.313 --> 00:26:06.982
and risk for dementia.

00:26:14.072 --> 00:26:18.910
There was food insecurity.
There was family insecurity.

00:26:20.579 --> 00:26:22.872
There were financial
insecurities.

00:26:23.832 --> 00:26:26.918
Stress is not good
for the brain.

00:26:28.044 --> 00:26:30.046
Even early-life stressors...

00:26:30.171 --> 00:26:34.551
all of these things
have to have a terrible toll.

00:26:40.473 --> 00:26:42.726
[DR. VALCOUR]: The development
of a resilient brain...

00:26:42.851 --> 00:26:44.728
which is what we think
is necessary...

00:26:44.894 --> 00:26:47.897
to prevent dementia--
is so tightly linked...

00:26:48.023 --> 00:26:50.692
to the social determinants
of health.

00:26:52.193 --> 00:26:56.698
Where you're born,
what communities you live in...

00:26:58.742 --> 00:27:01.328
it's a very tight link
to equity.

00:27:02.996 --> 00:27:06.082
And it's a bit
of a humanitarian crisis.

00:27:06.958 --> 00:27:09.794
[people chattering,
bell tolling]

00:27:11.171 --> 00:27:12.922
[people chattering]

00:27:13.048 --> 00:27:14.924
Good morning,
everyone in San Francisco...

00:27:15.050 --> 00:27:17.427
and good afternoon,
everyone in Dublin.

00:27:17.552 --> 00:27:19.971
[DR. MILLER]: Leaders at UCSF
work with leaders...

00:27:20.096 --> 00:27:22.682
at Trinity College,
two of the places...

00:27:22.807 --> 00:27:25.894
focused on brain health
across the world.

00:27:26.019 --> 00:27:27.479
Lingani.

00:27:27.604 --> 00:27:29.689
[DR. MILLER]: We don't just
want to train physicians.

00:27:29.814 --> 00:27:31.608
We don't think
that will be adequate.

00:27:31.733 --> 00:27:34.569
We want to change societies.

00:27:36.946 --> 00:27:38.948
I know in Botswana
there's a lot of stigma...

00:27:39.074 --> 00:27:40.992
against dementia
because it's not recognized.

00:27:41.117 --> 00:27:43.578
People don't have knowledge
about what it is.

00:27:45.622 --> 00:27:48.583
People might say
this person was a witch...

00:27:48.708 --> 00:27:50.543
or practiced witchcraft...

00:27:50.669 --> 00:27:53.672
which is why they are acting
the way they are.

00:27:55.965 --> 00:27:58.134
LORINA NACI: All of our
fellows, when they go back...

00:27:58.301 --> 00:28:01.388
they can help communities
use their existing resources...

00:28:01.513 --> 00:28:03.431
to support people
with dementia.

00:28:04.808 --> 00:28:06.810
How can people with dementia
have a voice...

00:28:06.976 --> 00:28:09.646
and be represented,
and not be stigmatized...

00:28:09.771 --> 00:28:12.857
and also how to push
science forward?

00:28:12.982 --> 00:28:15.652
[music]

00:28:23.785 --> 00:28:25.912
[DR. VALCOUR]: We are coming up
with new solutions...

00:28:26.037 --> 00:28:28.373
by mixing people
from various disciplines...

00:28:28.498 --> 00:28:30.542
and regions from around
the world....

00:28:30.667 --> 00:28:32.502
to think outside of the box.

00:28:32.627 --> 00:28:34.504
[all growling]

00:28:34.629 --> 00:28:35.839
[laughter]

00:28:36.005 --> 00:28:38.258
It cannot be a pure
biomedical model.

00:28:38.383 --> 00:28:39.759
We need to involve arts.

00:28:39.884 --> 00:28:42.762
We need to involve theater,
drama, music.

00:28:42.887 --> 00:28:44.848
Not many people
can read in Pakistan...

00:28:45.014 --> 00:28:47.559
if you go to the far-flung
rural areas.

00:28:47.684 --> 00:28:49.519
I've been working
about 15 years...

00:28:49.644 --> 00:28:51.688
with people with dementia
and music.

00:28:51.813 --> 00:28:55.024
♪ Well, it's one for the money,
two for the show ♪

00:28:55.191 --> 00:28:57.819
I remember this man
who was in a chair...

00:28:57.944 --> 00:29:00.989
and the staff said he hasn't
spoken to anybody for months.

00:29:01.114 --> 00:29:02.866
So, I bring him
some drumsticks...

00:29:02.991 --> 00:29:04.617
and then suddenly, it's like...
[imitating drumbeat]

00:29:04.743 --> 00:29:07.537
This incredibly
complex drum solo.

00:29:07.662 --> 00:29:09.080
You know, my jaw dropped.

00:29:09.205 --> 00:29:13.752
♪ Step on my blue suede shoes ♪
Woo-hoo!

00:29:13.877 --> 00:29:17.130
You could almost talk
about the powers of music...

00:29:17.255 --> 00:29:20.008
that it can act
on so many different levels.

00:29:20.133 --> 00:29:23.219
So, it could be a motivator
for physical activity.

00:29:24.095 --> 00:29:27.557
It could be
an inducer of memory...

00:29:27.682 --> 00:29:30.560
a real powerful recollection
of self-identity.

00:29:30.727 --> 00:29:33.062
[chuckles]
Nice to see you!

00:29:33.188 --> 00:29:35.064
[piano playing]

00:29:35.190 --> 00:29:36.524
[CATHERINE JORDAN]:
I'm a neuroscientist...

00:29:36.649 --> 00:29:38.234
as well as a pianist.

00:29:39.736 --> 00:29:41.780
I was really fascinated
by the effect music...

00:29:41.905 --> 00:29:43.406
how music changes the brain.

00:29:44.282 --> 00:29:46.034
As someone that's listening
to the piece of music...

00:29:46.159 --> 00:29:47.786
that's really
meaningful to them...

00:29:47.911 --> 00:29:50.163
it can trigger
autobiographical memories.

00:29:51.247 --> 00:29:54.918
This lifeline can help
their anxiety, depression...

00:29:55.043 --> 00:29:56.753
and in some cases,
it's more effective...

00:29:56.878 --> 00:29:58.296
than drug treatment.

00:29:58.963 --> 00:30:00.548
Then, why isn't this made
available to people?

00:30:00.673 --> 00:30:02.091
Why don't people know about it?

00:30:03.301 --> 00:30:04.928
The reason a lot of people
don't know about it...

00:30:05.053 --> 00:30:07.430
is that there's a lack
of scientific evidence.

00:30:08.306 --> 00:30:10.225
Why is this having
such a huge effect...

00:30:10.350 --> 00:30:11.768
on someone with dementia?

00:30:11.893 --> 00:30:13.686
And so, that's what I'm doing
in my fellowship.

00:30:15.939 --> 00:30:17.982
[DAVID LOUGHREY]:
I'm a research psychologist...

00:30:18.107 --> 00:30:19.442
looking at age-related
hearing loss...

00:30:19.609 --> 00:30:21.152
as a risk factor for dementia.

00:30:22.362 --> 00:30:23.780
As people lose their hearing...

00:30:23.947 --> 00:30:25.573
in order to compensate
for their hearing loss...

00:30:25.698 --> 00:30:27.951
they have to pay more attention
to what people are saying.

00:30:28.076 --> 00:30:29.786
And this appears
to draw resources...

00:30:29.911 --> 00:30:31.329
away from other parts
of the brain...

00:30:31.454 --> 00:30:33.748
which are important
for things such as memory.

00:30:35.458 --> 00:30:36.626
That makes sense.
This is something...

00:30:36.793 --> 00:30:38.044
I've experienced every day.

00:30:38.169 --> 00:30:40.755
[DAVID]: I was born with
a profound hearing loss...

00:30:40.880 --> 00:30:44.259
and I was very interested
to research this more.

00:30:44.384 --> 00:30:46.553
- You wanna give it a go?
- [MAN]: We'll give it a go.

00:30:46.678 --> 00:30:49.138
DAVID:
So, this EEG experiment is...

00:30:49.264 --> 00:30:51.182
it's an EEG memory test.

00:30:53.351 --> 00:30:55.019
[exhales sharply]

00:30:55.144 --> 00:30:57.313
If we can figure out
why hearing loss...

00:30:57.438 --> 00:30:58.857
is associated with dementia...

00:30:58.982 --> 00:31:01.442
and treating hearing loss
can provide a pathway...

00:31:01.568 --> 00:31:03.236
to reducing the risk
of dementia...

00:31:03.361 --> 00:31:05.154
then it could be enormous.

00:31:05.738 --> 00:31:07.574
[overlapping chatter]

00:31:07.991 --> 00:31:10.535
[DR. LAWLOR]:
This community of fellows...

00:31:10.660 --> 00:31:12.036
we hope that over
the next 15 years...

00:31:12.161 --> 00:31:14.080
we will have up
to 600 fellows.

00:31:14.205 --> 00:31:18.042
They will be able to impact not
only in their own countries...

00:31:18.167 --> 00:31:20.837
but also, because they
are networked together...

00:31:20.962 --> 00:31:24.007
they would be able to have
an effect globally.

00:31:25.091 --> 00:31:26.593
And that's really
the theory of change.

00:31:27.260 --> 00:31:29.888
[music]

00:31:32.265 --> 00:31:35.518
They said in five more years,
they might have a cure.

00:31:35.685 --> 00:31:37.353
[WALTER]:
Everything that happened...

00:31:37.478 --> 00:31:40.189
and the experience of seeing
the political...

00:31:40.315 --> 00:31:44.861
and policy process firsthand,
has very much shaped my life.

00:31:47.155 --> 00:31:48.781
Pretty much from that point
forward...

00:31:48.907 --> 00:31:51.618
I wanted to do
something in my life...

00:31:51.743 --> 00:31:55.705
to work on health policy
and aging issues.

00:31:55.872 --> 00:31:58.374
Alzheimer's starts in the
memory area, the hippocampus.

00:31:58.583 --> 00:32:01.085
[WALTER]: I'm a fellow with the
Global Brain Health Institute...

00:32:01.210 --> 00:32:05.131
with a focus on public policy
and health policy.

00:32:05.256 --> 00:32:07.300
[people chattering]

00:32:08.760 --> 00:32:10.887
[WALTER]: We had the chance
to go to the brain bank...

00:32:11.012 --> 00:32:13.264
at the hospital
in Sao Paolo, Brazil...

00:32:13.389 --> 00:32:16.142
which was a really powerful
experience.

00:32:19.020 --> 00:32:21.689
So, after we process all
the brains and we put this...

00:32:21.814 --> 00:32:24.192
[DR. GRINBERG]: I was born
and raised in Brazil.

00:32:24.317 --> 00:32:26.110
Actually, Brazil is one
of the only countries...

00:32:26.235 --> 00:32:28.780
in which autopsy
is still mandatory.

00:32:29.364 --> 00:32:32.075
So, we have one of the largest
brain banks...

00:32:32.200 --> 00:32:35.411
for these kind of studies
around the world.

00:32:36.496 --> 00:32:38.998
You can do research
in the very early stages...

00:32:39.123 --> 00:32:43.211
of the disease, as opposed
to donors from memory clinics...

00:32:43.336 --> 00:32:46.464
so they're already very sick
by the time they die.

00:32:47.215 --> 00:32:49.759
In Alzheimer's disease,
we find very early changes...

00:32:49.884 --> 00:32:51.260
in this region.

00:32:52.804 --> 00:32:54.722
[DR. GRINBERG]: This is why I
could make my findings...

00:32:54.847 --> 00:32:57.350
that Alzheimer's disease
changes...

00:32:57.475 --> 00:33:00.770
actually start developing
in a part of the brain...

00:33:00.895 --> 00:33:03.690
called brain stem,
that it's here in our neck.

00:33:04.482 --> 00:33:08.111
So, the question is,
what if we can detect...

00:33:08.277 --> 00:33:10.613
these very early changes
in the brain...

00:33:10.780 --> 00:33:13.116
and stop the process
right there?

00:33:13.282 --> 00:33:17.453
To test drugs, and see if they
can really halt...

00:33:17.578 --> 00:33:19.706
the disease spread.

00:33:22.625 --> 00:33:24.293
[DR. VALCOUR]: While others
are doing fantastic work...

00:33:24.419 --> 00:33:28.965
in trying to find cures,
we must address the issues now.

00:33:30.800 --> 00:33:32.093
[DR. ROBERTSON]: And we hope
that that can happen...

00:33:32.218 --> 00:33:34.721
with prevention,
that people are not stuck...

00:33:34.846 --> 00:33:37.306
in a pessimistic mindset.

00:33:37.432 --> 00:33:38.975
[music]

00:33:39.142 --> 00:33:41.060
[DR. LAWLOR]: I think we have
to change the narrative...

00:33:41.185 --> 00:33:43.479
and create a framework of hope
around dementia...

00:33:43.604 --> 00:33:46.274
because there are a lot
of things that we can do.

00:33:46.399 --> 00:33:48.443
[laughter]

00:33:49.569 --> 00:33:53.948
Perception about aging is not
very positive in general.

00:33:54.073 --> 00:33:55.992
And there's like the stigma.

00:33:56.159 --> 00:34:00.747
There's so much, uh, fear.

00:34:00.872 --> 00:34:03.458
I think that wisdom
and experience...

00:34:03.583 --> 00:34:06.377
is something that
they have more than we do.

00:34:06.753 --> 00:34:10.173
Somehow, society has not found
a way to share that wisdom.

00:34:10.339 --> 00:34:11.841
Most people think
that old people...

00:34:12.008 --> 00:34:15.303
are not intelligent somehow.

00:34:15.428 --> 00:34:17.597
We need to explain-- you know,
we want to explain things...

00:34:17.722 --> 00:34:19.390
we think that they're weak.

00:34:19.515 --> 00:34:21.100
[grunting]

00:34:23.686 --> 00:34:25.271
Let's go!

00:34:25.396 --> 00:34:27.940
[music]

00:34:41.829 --> 00:34:43.206
Whoo!

00:34:54.842 --> 00:34:56.302
ALEX: Hopefully,
we’re all going to be old...

00:34:56.427 --> 00:34:58.596
we're all going to get old,
and it's something...

00:34:58.721 --> 00:35:00.223
we don't want to think about.

00:35:01.390 --> 00:35:04.393
And I think it's good that
we not only think about it...

00:35:04.560 --> 00:35:07.897
but that we have a lot
of examples to look forward to.

00:35:09.982 --> 00:35:14.403
I've been surfing since 1960.

00:35:14.529 --> 00:35:15.905
He's not groaning today.

00:35:16.030 --> 00:35:18.157
I groan a lot.
[groaning]

00:35:20.118 --> 00:35:22.203
[people chattering]

00:35:23.663 --> 00:35:25.623
My name is Alex Kornhuber.

00:35:25.748 --> 00:35:28.501
I'm a photographer
from Lima, Peru.

00:35:28.626 --> 00:35:32.046
I'm photographing
a lot of aging surfers.

00:35:33.172 --> 00:35:35.133
I'm an aging surfer myself.

00:35:37.135 --> 00:35:40.054
There's an exercise part to it.

00:35:40.888 --> 00:35:42.974
There's also
a knowledge part to it.

00:35:44.433 --> 00:35:46.561
All surfers, they look
at the sea, and immediately...

00:35:46.686 --> 00:35:49.397
we can tell where the swell
is coming from.

00:35:49.522 --> 00:35:53.609
We understand tides,
wind, swell directions.

00:35:55.611 --> 00:35:58.489
You have to make decisions
very quickly.

00:35:58.614 --> 00:35:59.991
You don't doubt.

00:36:01.284 --> 00:36:04.120
And that's something
that gets better with time.

00:36:04.245 --> 00:36:07.248
As we age, we learn more
about the ocean.

00:36:09.625 --> 00:36:14.130
It gives you this feeling
of maybe awe, extreme awe.

00:36:15.381 --> 00:36:17.800
So, I think that knowledge
keeps our brain engaged.

00:36:18.134 --> 00:36:20.094
[laughter and chatter]

00:36:20.219 --> 00:36:22.972
It's not just
about surfing, is it?

00:36:23.139 --> 00:36:27.602
It's about having something
that turns you on...

00:36:27.727 --> 00:36:30.646
later in life,
or just keeping you going.

00:36:32.064 --> 00:36:36.444
Whether it's hiking,
walking, golf, swimming...

00:36:36.569 --> 00:36:39.488
whatever it is,
you don't ever wanna stop.

00:36:39.614 --> 00:36:42.158
You know?
[laughing]

00:36:43.117 --> 00:36:43.910
[dog barking]

00:36:44.535 --> 00:36:46.871
[GREG]: You know, it's a way
of life, really.

00:36:46.996 --> 00:36:49.165
It's more than just a sport.

00:36:51.459 --> 00:36:53.836
[ALEX]: There's a huge
community aspect, yeah.

00:36:54.629 --> 00:36:57.298
I think it's centered
around the good feelings...

00:36:57.423 --> 00:36:59.926
the feeling that you get
from riding waves.

00:37:02.887 --> 00:37:06.474
You sort of have this, like,
ecstatic feeling...

00:37:06.599 --> 00:37:09.227
like you're just
bursting with joy.

00:37:12.480 --> 00:37:15.650
I still see it,
I see it in elder surfers.

00:37:17.693 --> 00:37:19.403
We call it "stoke."

00:37:21.364 --> 00:37:24.075
It's changing my narrative
of life...

00:37:24.659 --> 00:37:26.911
to look forward to aging.

00:37:29.580 --> 00:37:31.999
I think the more you see it,
the more you embrace it.

00:37:32.124 --> 00:37:34.961
[music]

00:37:48.099 --> 00:37:49.767
[MAN]:
Go. Move it up yourself, go.

00:37:49.892 --> 00:37:50.935
Yeah, yeah.

00:37:51.060 --> 00:37:52.812
That makes the muscles.

00:37:52.937 --> 00:37:55.064
Eight, seven, six...

00:37:55.189 --> 00:37:58.025
[chatter and applause]

00:38:00.736 --> 00:38:02.238
[DR. SEAN KENNELLY]:
What's good for your heart...

00:38:02.363 --> 00:38:04.323
is what's good for your brain.

00:38:04.448 --> 00:38:07.159
You want to get people thinking,
you know, on a wellness basis...

00:38:07.285 --> 00:38:09.078
rather than reflecting too much
on the illness...

00:38:09.245 --> 00:38:11.747
that got them into ExWell.

00:38:13.749 --> 00:38:15.459
[DON BYRNE]:
You're always doing something...

00:38:15.584 --> 00:38:19.422
something different,
so you're not bored.

00:38:19.547 --> 00:38:21.132
[laughing]

00:38:21.257 --> 00:38:24.343
Giving out leaflets,
and telling people to go walk...

00:38:24.468 --> 00:38:26.971
was not going to be
impactful enough.

00:38:27.096 --> 00:38:29.598
We needed to present them
with a program.

00:38:29.724 --> 00:38:33.060
I can see the benefits that
would have accrued to me...

00:38:33.185 --> 00:38:34.895
had I started 10 years ago.

00:38:35.021 --> 00:38:36.314
Yeah, but by the same token...

00:38:36.439 --> 00:38:37.940
there's nothing you did
to cause this.

00:38:38.107 --> 00:38:40.318
In your dad's case,
we checked to see...

00:38:40.443 --> 00:38:42.320
what might be causing
memory loss. It’s...

00:38:42.445 --> 00:38:44.155
mild cognitive impairment...

00:38:44.280 --> 00:38:46.115
where somebody
has a memory nuisance...

00:38:46.240 --> 00:38:47.825
- that's kind of persisting.
- Yeah.

00:38:47.950 --> 00:38:51.037
Our main focus then
is to get the very best...

00:38:51.162 --> 00:38:52.788
out of the memory that's there.

00:38:54.123 --> 00:38:55.291
So, Don, remember when
we were talking...

00:38:55.416 --> 00:38:57.126
about the diet, the nutrition...

00:38:57.293 --> 00:38:59.170
about what we could reduce
and stuff like that.

00:38:59.295 --> 00:39:01.172
SEAN: It’s medically supervised.

00:39:01.297 --> 00:39:03.424
I am prescribing this
as I would their medication.

00:39:03.549 --> 00:39:05.009
Okay, I know it's quite hard...

00:39:05.134 --> 00:39:06.427
for the first few days
because...

00:39:06.552 --> 00:39:08.346
Especially giving up chocolate.

00:39:08.471 --> 00:39:10.723
[SEAN]: Being in the community,
as opposed to the hospital...

00:39:10.848 --> 00:39:13.559
kinda takes away a bit
of the stigma attached to it.

00:39:14.477 --> 00:39:16.145
A lot of the times when
we talk about dementia...

00:39:16.270 --> 00:39:17.897
we talk about memory,
but in reality...

00:39:18.022 --> 00:39:19.440
- it's about functioning.
- Yeah.

00:39:19.565 --> 00:39:21.776
Have you noticed any change
in Don's ability...

00:39:21.901 --> 00:39:23.235
to do his day-to-day things.

00:39:23.361 --> 00:39:26.655
Well, I know my mum
will tell us things...

00:39:26.781 --> 00:39:29.075
because he might ring her
from the supermarket...

00:39:29.200 --> 00:39:30.993
where he rang
and he had to ask her...

00:39:31.118 --> 00:39:32.703
what kitchen rolls were.

00:39:32.828 --> 00:39:34.330
- Were you looking at a list?
- I made the list.

00:39:34.497 --> 00:39:37.625
I'm looking at the words
"kitchen rolls..."

00:39:37.750 --> 00:39:40.211
and I'm absolutely blank.

00:39:40.336 --> 00:39:41.962
I have to phone...

00:39:42.088 --> 00:39:43.297
and say,
"What are kitchen rolls?"

00:39:43.422 --> 00:39:44.757
- Mm.
- And then she says...

00:39:44.882 --> 00:39:47.051
what they are and,
oh, for God's sake.

00:39:47.176 --> 00:39:49.845
But on the plus side,
you knew how to work around it.

00:39:50.012 --> 00:39:51.347
- Oh yeah, yeah.
- And I think...

00:39:51.514 --> 00:39:52.890
I would be reassured by that.

00:39:53.015 --> 00:39:54.934
So, you knew who to ring,
and you knew how to ring...

00:39:55.059 --> 00:39:57.478
- and you knew what to ask.
- Sure, yes, yeah.

00:39:57.603 --> 00:40:00.773
So, you-- you came up
and you got to the solution.

00:40:00.898 --> 00:40:02.316
[music playing]

00:40:02.441 --> 00:40:03.734
LAURI MCDERMOTT:
Keep going.

00:40:03.859 --> 00:40:05.986
[indistinct chatter]

00:40:06.112 --> 00:40:08.989
If you're out of breath,
keep your hands on your hips.

00:40:09.115 --> 00:40:10.658
[LAURI]: For brain health,
by exercising...

00:40:10.783 --> 00:40:13.369
we're reducing
the risk of dementia...

00:40:13.536 --> 00:40:15.371
we're reducing how quickly
it will progress.

00:40:15.496 --> 00:40:16.705
And punching forward.

00:40:16.831 --> 00:40:18.249
Let's everybody
pick up the pace!

00:40:18.374 --> 00:40:20.334
This is for five, four...

00:40:20.459 --> 00:40:22.420
And for quality of life,
of being around other people...

00:40:22.545 --> 00:40:25.005
suffering from illness,
but in a positive way.

00:40:25.131 --> 00:40:26.465
So, everybody is fighting back.

00:40:26.590 --> 00:40:28.801
Everybody's trying
to better themselves.

00:40:30.553 --> 00:40:32.888
WOMAN: This sort of brings you
out of yourself...

00:40:33.013 --> 00:40:34.807
and makes you do
a little bit more...

00:40:34.932 --> 00:40:36.642
than you think you can.

00:40:36.767 --> 00:40:40.396
LAURI: Punch for five,
four, three, two...

00:40:40.563 --> 00:40:42.523
and one, brilliant.

00:40:42.648 --> 00:40:44.400
SEAN: So, even if we come up
with a medicine...

00:40:44.525 --> 00:40:48.112
these will all be very, very
important paradigms...

00:40:48.237 --> 00:40:49.947
in the management and care
for somebody...

00:40:50.072 --> 00:40:51.991
who's living with dementia.

00:40:52.116 --> 00:40:53.409
So, ExWell is bringing
the body...

00:40:53.576 --> 00:40:55.619
and your heart
to the gym, okay?

00:40:55.744 --> 00:40:58.706
Meeting new people,
that's the ultimate workout.

00:41:01.041 --> 00:41:03.252
[people chattering]

00:41:04.253 --> 00:41:06.881
[laughing, muttering]

00:41:07.006 --> 00:41:09.800
It's an exercise in trying
to remember people's names.

00:41:09.925 --> 00:41:12.678
You meet 'em on a Tuesday,
and the next thing, on Friday...

00:41:12.803 --> 00:41:14.763
you're saying hello and you're
trying to remember their names.

00:41:14.889 --> 00:41:16.265
But eventually, we're getting
through, aren't we?

00:41:16.432 --> 00:41:17.308
Yes, yeah.

00:41:17.433 --> 00:41:19.310
[people chattering]

00:41:19.435 --> 00:41:21.020
[LAURI]:
We're here to facilitate it...

00:41:21.145 --> 00:41:22.313
but it's the participants
themselves...

00:41:22.438 --> 00:41:24.940
that give
each other the support.

00:41:25.065 --> 00:41:26.901
We find that a lot of people
aren't actually well enough...

00:41:27.026 --> 00:41:28.861
to take part,
but they're coming on anyway...

00:41:28.986 --> 00:41:31.197
just to get out of the house
and see their friends...

00:41:31.322 --> 00:41:33.115
and have a cup of tea
at the end.

00:41:33.240 --> 00:41:35.868
[applause]

00:41:39.371 --> 00:41:41.790
Good man.
Good man.

00:41:42.833 --> 00:41:44.460
KENNELLEY: So, I’m gonna write
up your prescription...

00:41:44.585 --> 00:41:46.504
just for another
six months of ExWell.

00:41:47.463 --> 00:41:48.839
When people come
into the office...

00:41:48.964 --> 00:41:50.758
there is that sense
of fear and futility...

00:41:50.883 --> 00:41:53.761
and we hope that we give them
a sense of empowerment.

00:41:53.886 --> 00:41:56.847
That is living with dementia.
That’s not being, you know...

00:41:56.972 --> 00:41:59.058
- imprisoned by it.
- Ah, thank you so much.

00:41:59.183 --> 00:42:00.893
SEAN: Kind of retreating
into your shell...

00:42:01.018 --> 00:42:02.770
trying to hide away.

00:42:02.895 --> 00:42:04.480
She slept and everything.

00:42:04.647 --> 00:42:06.148
[DR. KENNELLEY]: The most
important intervention...

00:42:06.315 --> 00:42:10.569
that we need to make isn't on
people who have dementia.

00:42:10.694 --> 00:42:12.988
It's on us.
It's on society.

00:42:13.781 --> 00:42:15.616
We've become such
a liberal society...

00:42:15.741 --> 00:42:17.034
in so many ways...

00:42:17.159 --> 00:42:18.619
but when it comes
to older people...

00:42:18.744 --> 00:42:20.329
and when it comes to
people living with dementia...

00:42:20.496 --> 00:42:21.705
if they start acting
a little bit different...

00:42:21.830 --> 00:42:24.667
often society
cannot be very tolerant.

00:42:26.794 --> 00:42:29.421
[music]

00:42:36.345 --> 00:42:37.888
I'm Lenny White.

00:42:38.013 --> 00:42:41.433
I'm a mobile barber
for those living with dementia.

00:42:41.559 --> 00:42:44.353
And I will travel all around
the north of Ireland...

00:42:44.478 --> 00:42:46.689
and it's basically
a pop-up barbershop.

00:42:46.855 --> 00:42:50.526
So, I'll bring in the barbershop
experience to these men.

00:42:54.572 --> 00:42:56.031
It's all the small little
things...

00:42:56.198 --> 00:42:58.284
that make a massive difference.

00:42:58.409 --> 00:43:00.369
I really enjoy
going into their world...

00:43:00.536 --> 00:43:02.871
getting that person to open up.

00:43:03.038 --> 00:43:04.248
[hair clippers buzzing]

00:43:04.373 --> 00:43:07.876
Oh!
[cheering]

00:43:08.043 --> 00:43:09.753
[LENNY]: It's a very
familiar setting.

00:43:09.878 --> 00:43:13.549
They recognize, you know,
the signs, the smells.

00:43:13.674 --> 00:43:16.260
It's a feeling of being
in an old-time barbershop.

00:43:16.385 --> 00:43:18.178
[music playing]

00:43:18.304 --> 00:43:19.847
Shh, the lady's singing.
[chuckles]

00:43:19.972 --> 00:43:21.640
[LENNY]:
They're hearing the music...

00:43:21.765 --> 00:43:24.518
that they would have heard
when they were my age.

00:43:26.520 --> 00:43:28.689
- Right, give me your glasses.
- All together.

00:43:28.814 --> 00:43:30.899
[singing]

00:43:32.359 --> 00:43:33.902
[LENNY]: I'm trying to make
that person...

00:43:34.028 --> 00:43:36.155
feel good for that day,
and that will actually have...

00:43:36.280 --> 00:43:37.906
a lasting impact
on that person.

00:43:38.073 --> 00:43:39.617
You know, because then the rest
of the day, they'll feel...

00:43:39.742 --> 00:43:41.076
they'll know
they're looking good...

00:43:41.201 --> 00:43:42.244
and they're feeling good.

00:43:42.369 --> 00:43:44.121
Close your wee eyes for me.

00:43:44.246 --> 00:43:46.248
Oh, that's lovely, me eyebrows
are now getting done.

00:43:46.415 --> 00:43:48.917
[laughing]

00:43:49.084 --> 00:43:50.628
- [LENNY]: Will he get a date?
- [WOMAN]: Oh, he is lovely.

00:43:50.753 --> 00:43:53.380
[WOMAN]: Hunky Chunky!
[LENNY]: Who wants him?

00:43:53.505 --> 00:43:56.675
[LENNY]: Oh, there you go.
You get two dates, at least.

00:43:57.760 --> 00:43:59.637
[LENNY]: That's what the day's
like. We have a laugh.

00:43:59.762 --> 00:44:02.473
Like, it's all about just,
you know, a bit of craic.

00:44:02.598 --> 00:44:03.974
And they know
it's a bit of craic, you know?

00:44:04.099 --> 00:44:05.476
That's the main thing.

00:44:06.143 --> 00:44:08.479
[MAN]: What do you call it?
The Scottish Mist?

00:44:09.438 --> 00:44:10.606
Can't remember.

00:44:10.773 --> 00:44:12.608
Over in the islands
of Scotland?

00:44:12.733 --> 00:44:15.944
I'm having a bit of trouble
with the...

00:44:16.070 --> 00:44:19.323
I don't know whether
it's the brain, or what it is.

00:44:19.448 --> 00:44:20.908
- Right.
- But...

00:44:21.033 --> 00:44:23.661
I'm the same.
I'm the same.

00:44:23.786 --> 00:44:26.121
I see them as how they were.

00:44:26.288 --> 00:44:28.540
Were you chasing
all the Belfast girls?

00:44:28.666 --> 00:44:30.626
Oh, yes.
[laughing]

00:44:30.751 --> 00:44:33.796
[LENNY]: When they start
speaking and remembering...

00:44:33.962 --> 00:44:35.631
and the images are
coming into their mind...

00:44:35.798 --> 00:44:37.466
their memories are coming back.

00:44:37.591 --> 00:44:39.718
Oh no, we had some
great times.

00:44:39.843 --> 00:44:42.471
[LENNY]: It's memories that
would make them feel good...

00:44:42.596 --> 00:44:43.764
'cause it was their past.

00:44:43.889 --> 00:44:45.391
You know,
it was their passion.

00:44:46.183 --> 00:44:49.395
Oh, hey!
That's not bad for a beginner.

00:44:49.520 --> 00:44:50.813
[LENNY]: It's nice though,
isn't it?

00:44:50.938 --> 00:44:52.147
[laughing]

00:44:52.272 --> 00:44:53.440
Oh, that was great.

00:44:53.565 --> 00:44:55.401
Good, no worries, all right?

00:45:00.239 --> 00:45:02.866
[women speaking in Japanese]

00:45:07.788 --> 00:45:10.833
[EMI]: Everybody
wants to be useful to others.

00:45:10.958 --> 00:45:13.544
Everyone has something
to offer.

00:45:13.669 --> 00:45:15.879
That's the reason
why I started Ibasho.

00:45:18.424 --> 00:45:21.301
So, Ibasho is a Japanese term.

00:45:21.427 --> 00:45:25.097
It is a place where you feel
at home being yourself.

00:45:25.222 --> 00:45:26.473
[women laughing]

00:45:26.598 --> 00:45:30.352
Ibasho is a community,
and also a space...

00:45:30.477 --> 00:45:33.355
where people can
congregate physically.

00:45:33.480 --> 00:45:35.441
[exclaiming,
people laughing]

00:45:35.566 --> 00:45:39.361
Where older people
actually run everything.

00:45:39.778 --> 00:45:42.197
[people chattering]

00:45:43.532 --> 00:45:45.451
[Emi]: They needed income...

00:45:45.576 --> 00:45:47.786
so they started
organic gardens...

00:45:49.204 --> 00:45:51.165
a farmers market...

00:45:52.249 --> 00:45:55.127
And then, they have a café.

00:45:59.214 --> 00:46:01.925
[Emi]: The very first Ibasho
was built in Japan...

00:46:02.050 --> 00:46:06.555
and then we developed Ibasho
in the Philippines...

00:46:08.056 --> 00:46:10.100
and also in Nepal.

00:46:11.560 --> 00:46:13.687
[Speaking in native language]

00:46:13.812 --> 00:46:18.525
[EMI]: Ibasho is really a place
where older people...

00:46:18.650 --> 00:46:22.613
find opportunity
to be useful to others.

00:46:22.738 --> 00:46:25.574
[music playing]

00:46:27.367 --> 00:46:30.370
[Emi]: When you think about
the concept of community...

00:46:30.496 --> 00:46:34.958
it is very strange to have
age-segregated space, you know?

00:46:35.083 --> 00:46:37.920
[people singing in Nepali]

00:46:39.213 --> 00:46:42.925
[EMI]: What we want to change
is this negative narrative of...

00:46:43.050 --> 00:46:47.054
older people being helpless...

00:46:47.179 --> 00:46:51.809
to you know, older people
with capacity and strength.

00:46:53.936 --> 00:46:57.981
With some physical and
cognitive challenges...

00:46:58.106 --> 00:47:01.693
but just capable
human beings first.

00:47:02.653 --> 00:47:04.655
[speaking native language]

00:47:07.616 --> 00:47:10.118
[dog barking]

00:47:13.831 --> 00:47:16.500
[DANA]: I live out
in the country in Vermont...

00:47:16.625 --> 00:47:19.503
and so we're driving
down Route 15...

00:47:19.628 --> 00:47:21.338
and my mother turns to me
and she says...

00:47:21.463 --> 00:47:27.761
"Dana, I just got my period.
It's the first time, you know."

00:47:29.638 --> 00:47:32.516
And I said,
"You're growing up."

00:47:32.641 --> 00:47:35.018
[laughing]
I said, "That's wonderful.

00:47:35.143 --> 00:47:37.229
What should we do
to celebrate?"

00:47:43.443 --> 00:47:46.071
And as she was feeling young
like that...

00:47:46.280 --> 00:47:48.991
then she started talking about
going to Armenian school...

00:47:49.116 --> 00:47:50.325
in New York City.

00:47:50.492 --> 00:47:53.287
She started to tell me
about the Armenian boys.

00:47:53.412 --> 00:47:56.540
I would never date one of them,
they're way too hairy.

00:47:56.665 --> 00:47:59.001
[laughing]

00:47:59.126 --> 00:48:02.796
I met all sorts of characters
that I never had known before...

00:48:02.921 --> 00:48:05.632
as she kind of traveled
through time.

00:48:10.846 --> 00:48:12.639
My mother's name is Alice.

00:48:12.764 --> 00:48:17.185
I'm working on a graphic memoir
about my mother and dementia.

00:48:19.062 --> 00:48:22.190
My mother and I were not close.

00:48:23.483 --> 00:48:25.819
I was the daughter who
got on her nerves...

00:48:25.944 --> 00:48:28.822
and I mean,
the feeling was mutual.

00:48:28.947 --> 00:48:30.532
I remember her
hugging me goodbye once...

00:48:30.657 --> 00:48:33.785
and saying, "I don't know
what I would do without you.

00:48:33.911 --> 00:48:36.371
And you used to be
so annoying!"

00:48:36.538 --> 00:48:38.206
[laughing]

00:48:49.092 --> 00:48:52.971
Her bathrobe is made
of cut text...

00:48:53.096 --> 00:48:56.391
from Lewis Carroll's
"Alice in Wonderland."

00:49:01.313 --> 00:49:03.982
We have to think
about how the person...

00:49:04.107 --> 00:49:06.109
even when they lose their
short-term memory...

00:49:06.234 --> 00:49:07.945
even when they
lose their ability...

00:49:08.070 --> 00:49:10.197
to communicate using words...

00:49:10.322 --> 00:49:13.575
we can still really connect
with them.

00:49:13.700 --> 00:49:15.911
And often, it's not through,
you know...

00:49:16.036 --> 00:49:17.496
straightforward conversation.

00:49:17.621 --> 00:49:21.583
It's through-- through touch,
through sounds.

00:49:21.708 --> 00:49:25.712
It's through, you know,
very gentle kinds of things.

00:49:30.342 --> 00:49:31.510
I was losing her...

00:49:31.635 --> 00:49:33.971
but gaining her
at the same time.

00:49:41.395 --> 00:49:43.230
Whenever we were outside
walking around...

00:49:43.355 --> 00:49:45.607
she would say, "Oh, look,
there's Dave in a tree."

00:49:45.774 --> 00:49:47.275
Dave was my father.

00:49:51.363 --> 00:49:53.573
"Alice in Wonderland"
really captured...

00:49:53.699 --> 00:49:56.326
how we lived through dementia.

00:50:02.207 --> 00:50:04.501
Occasionally, it was scary,
but most of the time...

00:50:04.876 --> 00:50:08.338
if you just went with
whatever was going on...

00:50:08.463 --> 00:50:09.923
it was an adventure.

00:50:11.758 --> 00:50:13.844
And so, the pun
was irresistible...

00:50:13.969 --> 00:50:16.138
to call the book
"Aliceheimer's."

00:50:19.975 --> 00:50:23.186
I got more compliments
and more kindness...

00:50:23.311 --> 00:50:27.441
during the years of dementia,
that it was lovely.

00:50:29.317 --> 00:50:31.153
One day,
I was brushing her hair...

00:50:31.319 --> 00:50:34.072
and she said to me,
as she often did...

00:50:34.197 --> 00:50:36.700
she said, "Dana, why are you
so good to me?"

00:50:36.825 --> 00:50:38.577
And I said,
"Because you're my mother."

00:50:38.702 --> 00:50:40.829
She said, "Ah, yes,
I remember."

00:50:40.996 --> 00:50:42.664
And I kept brushing her hair...

00:50:42.789 --> 00:50:45.000
and our eyes then met
in the mirror...

00:50:45.167 --> 00:50:47.169
and she looked at me and said...

00:50:47.294 --> 00:50:50.797
"I wasn't very good to you.
I'm sorry."

00:50:56.386 --> 00:50:59.181
That's what I felt like
dementia really allowed.

00:50:59.306 --> 00:51:02.768
We were able to meet in a way
that we couldn't meet...

00:51:02.893 --> 00:51:06.354
before dementia
entered into our lives.

00:51:11.651 --> 00:51:14.321
[tambourine playing]

00:51:15.906 --> 00:51:18.784
[singing in Portuguese]

00:51:25.874 --> 00:51:28.543
[people speaking in Portuguese]

00:51:32.631 --> 00:51:35.258
[music playing]

00:51:36.676 --> 00:51:40.847
[ALEX]: I know I will be
documenting aging as I age.

00:51:42.390 --> 00:51:45.102
Photography's just an excuse
to come close to people, right?

00:51:45.227 --> 00:51:46.895
I'm fascinated by people.

00:51:47.020 --> 00:51:49.856
[rhythmic clapping]

00:51:53.443 --> 00:51:55.737
I put myself in the shoes
of that person.

00:51:55.904 --> 00:51:57.823
I try to feel,
I want to be close.

00:51:57.948 --> 00:52:00.283
I want to smell,
I want to touch.

00:52:02.994 --> 00:52:04.579
[music ends]

00:52:04.746 --> 00:52:07.249
[cheers and applause]

00:52:07.415 --> 00:52:10.377
It's like an empathy tool,
photography.

00:52:18.552 --> 00:52:20.929
Would you let me take a picture
of those glasses of yours?

00:52:21.054 --> 00:52:22.264
- Sure.
- Yeah?

00:52:22.430 --> 00:52:25.433
[camera clicking]
That is classic!

00:52:25.600 --> 00:52:26.893
Where did you get that?

00:52:27.018 --> 00:52:28.687
My daughter bought them for me.

00:52:28.812 --> 00:52:30.772
Whoa, I love the style!

00:52:30.897 --> 00:52:32.440
[man muttering]

00:52:32.607 --> 00:52:34.067
- Oh, thank you so much, man.
- All right.

00:52:34.192 --> 00:52:36.278
You take care, okay?
Have a great day.

00:52:36.444 --> 00:52:39.072
[music]

00:52:40.448 --> 00:52:42.993
[ALEX]: Through photography,
we can create awareness...

00:52:43.118 --> 00:52:46.246
in ways that scientists can't.

00:52:47.914 --> 00:52:50.208
We do it with images.

00:52:51.293 --> 00:52:53.420
We do it in a language
that is universal.

00:52:54.212 --> 00:52:57.048
[people chattering]

00:53:00.969 --> 00:53:02.637
[ALEX]: I would like to show
through my pictures...

00:53:02.804 --> 00:53:06.057
that you can do
so many things as you age.

00:53:07.309 --> 00:53:09.936
[music]

00:53:16.943 --> 00:53:18.361
There's so much we can do.

00:53:18.486 --> 00:53:20.614
You don't have
to sit around and wait.

00:53:20.739 --> 00:53:22.157
Yeah.

00:53:29.539 --> 00:53:33.126
HELEN: When I got the diagnosis
of early onset Alzheimer's...

00:53:33.251 --> 00:53:35.253
I just thought
this was the end.

00:53:36.504 --> 00:53:39.841
I spent 10 months
just absolutely...

00:53:39.966 --> 00:53:41.843
completely in the darkest hole..

00:53:42.010 --> 00:53:43.970
you could ever believe
of depression.

00:53:44.804 --> 00:53:47.140
A year before that,
I was involved in so much...

00:53:47.265 --> 00:53:48.475
and then there was nothing.

00:53:48.600 --> 00:53:51.186
[coffee pot bubbling]

00:53:52.229 --> 00:53:54.522
I wish somebody had been there
to tell me...

00:53:54.689 --> 00:53:56.775
"Don't stay in the house."

00:53:56.900 --> 00:53:59.027
[birdsong]

00:53:59.152 --> 00:54:02.656
And then, I was at
our local hospital...

00:54:02.781 --> 00:54:05.659
and the nurse said to me
she heard on the radio...

00:54:05.784 --> 00:54:08.161
about research at Trinity.

00:54:08.286 --> 00:54:10.038
I mean, that was the...

00:54:10.205 --> 00:54:12.207
that was the turning point
in my life.

00:54:13.708 --> 00:54:15.252
[car starting]

00:54:15.377 --> 00:54:17.045
One of the lecturers
talked about Cognitive...

00:54:17.212 --> 00:54:19.881
Rehabilitative Therapy.

00:54:20.048 --> 00:54:22.550
I am going to do something...

00:54:22.717 --> 00:54:26.554
like turn left and left,
as a strategy.

00:54:27.806 --> 00:54:30.558
Cognitive Behavioral Therapy is
about giving you strategies...

00:54:30.684 --> 00:54:34.688
and about how we can make
our lives a lot easier.

00:54:35.480 --> 00:54:39.985
Labels on your cupboards,
sticky notes, lights.

00:54:40.110 --> 00:54:41.653
"Have you turned off
the cooker?"

00:54:43.113 --> 00:54:45.073
Okay, they don't look great,
but who cares?

00:54:45.240 --> 00:54:47.492
Yeah, who, yeah, yeah.

00:54:48.910 --> 00:54:50.412
I write everything down...

00:54:50.578 --> 00:54:53.123
you know, who called you,
who didn't call you.

00:54:54.874 --> 00:54:58.920
If anxiety sets in,
I try and use mindfulness...

00:54:59.087 --> 00:55:01.089
to stay in the moment...

00:55:01.256 --> 00:55:04.050
until all the sadness
and badness goes.

00:55:06.094 --> 00:55:08.221
With the strategies,
I think it gave me...

00:55:08.346 --> 00:55:12.100
some sense of empowerment,
and some sense...

00:55:12.267 --> 00:55:14.477
that I can actually
do something again.

00:55:18.440 --> 00:55:20.358
Because once I started
to go out...

00:55:20.483 --> 00:55:22.110
I started to enjoy the garden...

00:55:22.277 --> 00:55:25.030
I started to get my hands
into soil.

00:55:25.155 --> 00:55:28.199
That feeling
of standing in the garden...

00:55:28.325 --> 00:55:30.618
and just listening
to the birds.

00:55:34.205 --> 00:55:36.374
Martin was so excited,
and you know...

00:55:36.499 --> 00:55:39.002
that he could see his mother
being able to do things again.

00:55:39.336 --> 00:55:40.670
...she said,
"What do you think it is?"

00:55:40.795 --> 00:55:43.131
[overlapping chatter]
Sean would go downtown...

00:55:43.256 --> 00:55:46.593
and somebody would say to him,
"I saw Helen, she looks great."

00:55:46.718 --> 00:55:50.221
I said, oh, I'm wondering
how I'm supposed to look.

00:55:50.347 --> 00:55:52.140
So I'm still wondering
after almost eight years...

00:55:52.307 --> 00:55:54.642
what's the Alzheimer's look?
[laughing]

00:55:56.811 --> 00:55:58.646
[HELEN]: We aren't mentally ill.

00:55:58.772 --> 00:56:01.649
We have a brain problem,
but we're not mentally ill.

00:56:02.525 --> 00:56:04.152
We have to break down stigma...

00:56:04.277 --> 00:56:07.322
and back then, it was really,
really difficult.

00:56:07.447 --> 00:56:09.949
[HOST]: Please welcome
Helen Rochford-Brennan...

00:56:10.075 --> 00:56:11.785
and her son Martin.

00:56:11.910 --> 00:56:13.953
[cheers and applause]

00:56:14.871 --> 00:56:18.792
[HELEN]: Nobody in Ireland
was speaking about it.

00:56:18.917 --> 00:56:24.172
I started talking to whomever
wanted to hear my story...

00:56:24.297 --> 00:56:27.133
whoever wanted
to write about my story.

00:56:27.258 --> 00:56:30.512
I think with the illness
of Alzheimer's...

00:56:30.678 --> 00:56:32.972
it's very much
a family illness as well.

00:56:33.098 --> 00:56:35.350
The more I can talk about this..

00:56:35.517 --> 00:56:38.144
the easier it is
for other families.

00:56:38.269 --> 00:56:40.188
[MARTIN]: It's an upsetting
conversation to have...

00:56:40.313 --> 00:56:42.065
and tears are gonna roll.

00:56:42.190 --> 00:56:43.775
And it's best to talk
through things.

00:56:44.692 --> 00:56:46.152
[HELEN]: People don't know
how to talk to you...

00:56:46.277 --> 00:56:47.362
and that’s one
of the hardest things...

00:56:47.529 --> 00:56:48.780
for me to deal with.

00:56:48.905 --> 00:56:50.281
Yeah, and it's...

00:56:50.407 --> 00:56:52.992
[HELEN]: Going on TV,
nerve-wracking as it was...

00:56:53.118 --> 00:56:56.454
was a good opportunity to--
for me to understand...

00:56:56.579 --> 00:56:58.706
that we can speak
for ourselves.

00:56:58.873 --> 00:57:02.710
And today, I'm advocating
for my own rights.

00:57:02.836 --> 00:57:04.212
Our voices
are really important...

00:57:04.379 --> 00:57:05.505
and our voices should be heard.

00:57:06.089 --> 00:57:10.218
GROUP: ♪ Far away from
the cold night air ♪

00:57:10.343 --> 00:57:14.222
- Sorry.
- ♪ With one enormous chair ♪

00:57:14.389 --> 00:57:17.517
♪ Oh, wouldn't it be loverly ♪

00:57:17.642 --> 00:57:20.061
[KARIN DIAMOND]: Every one of us
has a story to tell.

00:57:20.228 --> 00:57:23.815
[people chattering]

00:57:23.940 --> 00:57:27.277
And some of us
need our story heard.

00:57:28.903 --> 00:57:32.907
"I can't lose my bag again.

00:57:33.074 --> 00:57:36.744
Mom, Gareth found your bag
in the garden. Right.

00:57:36.870 --> 00:57:37.996
Do you lose things?”

00:57:38.121 --> 00:57:40.123
My name is Karin Diamond.

00:57:40.331 --> 00:57:44.377
I'm a playwright and Artistic
Director based in Wales.

00:57:51.426 --> 00:57:56.014
I knew that I really wanted
to create...

00:57:56.139 --> 00:57:58.308
a dementia awareness play.

00:57:58.433 --> 00:58:01.519
I don't think he knows
who I am.

00:58:04.105 --> 00:58:05.690
I've lost him.

00:58:07.901 --> 00:58:10.528
Oh, I'm sorry.
I'm sorry, I'm so sorry.

00:58:10.653 --> 00:58:13.948
Not at all, Mags, not at all.

00:58:14.115 --> 00:58:15.909
- Not at all.
- Mags!

00:58:16.034 --> 00:58:17.827
[gasps]

00:58:19.579 --> 00:58:23.249
[KARIN]: The power of the
family's story of dementia...

00:58:23.374 --> 00:58:27.295
can start building compassion
and understanding...

00:58:27.420 --> 00:58:29.797
for what families
are going through.

00:58:33.176 --> 00:58:35.428
[whimpering]

00:58:35.553 --> 00:58:38.973
My great-grandmother
had vascular dementia.

00:58:39.140 --> 00:58:40.558
I-- we as a family...

00:58:40.683 --> 00:58:42.393
really did not know that
at the time.

00:58:42.519 --> 00:58:44.771
It was called,
you know, memory problems.

00:58:44.896 --> 00:58:48.733
So yeah, that was-- that was
my maybe first experience...

00:58:48.858 --> 00:58:50.818
of dementia.

00:58:51.861 --> 00:58:54.989
[KARIN]: Where you are just
connecting with me, okay?

00:58:55.114 --> 00:58:57.242
♪ La-la-la, la-la-la,
la-la-la-la ♪

00:58:57.367 --> 00:58:58.660
[ALL]: ♪ La-la-la,
la-la-la, la-la-la-la ♪

00:58:58.826 --> 00:59:01.913
[KARIN]:
Memoria is a group of people...

00:59:02.038 --> 00:59:03.373
who are living with dementia.

00:59:03.498 --> 00:59:06.292
- [KARIN]: Yes!
- [ALL]: Yes!

00:59:06.417 --> 00:59:09.837
[KARIN]: Family members
and a care-home manager.

00:59:10.004 --> 00:59:12.966
- Bugger off.
- [ALL]: Bugger off.

00:59:13.091 --> 00:59:14.759
[laughter]

00:59:14.884 --> 00:59:20.181
[KARIN]: Who come together,
and they're able to express...

00:59:20.306 --> 00:59:21.808
what they would like to.

00:59:23.059 --> 00:59:26.854
And an audience
bears witness to the story.

00:59:29.107 --> 00:59:32.527
There are good days
and there are bad days.

00:59:34.028 --> 00:59:39.576
There's a continuous search
for things that you have lost.

00:59:41.953 --> 00:59:45.623
- WOMAN: [whispering] Keys.
- [MAN]: Keys...

00:59:48.459 --> 00:59:54.299
- [whispering] Bags.
- Bags. Names.

00:59:56.718 --> 00:59:58.344
Words.

01:00:00.054 --> 01:00:03.891
Jill, you look exhausted.
You haven't slept.

01:00:04.058 --> 01:00:08.521
Why don't you give some thought
to Chris going to a day center?

01:00:08.646 --> 01:00:12.900
A day center?
What, have him go away from me?

01:00:13.860 --> 01:00:17.238
How-- how would they know
how to look after him?

01:00:17.363 --> 01:00:19.574
How would they know
his funny ways?

01:00:19.699 --> 01:00:22.285
At the moment, I'm the only one
who can manage with him...

01:00:22.410 --> 01:00:24.912
because I know what he's like.

01:00:25.038 --> 01:00:26.497
But thank you.

01:00:27.915 --> 01:00:31.252
And finally, I thought
to myself, she's right.

01:00:31.377 --> 01:00:32.920
I've got to get help here.

01:00:33.087 --> 01:00:36.758
So, I said,
"Chris, I've got you a job."

01:00:36.924 --> 01:00:39.594
[audience laughing]
"A job?"

01:00:39.761 --> 01:00:41.679
One time, apparently--
I can’t remember...

01:00:41.804 --> 01:00:43.848
but apparently, I made gravy...

01:00:43.973 --> 01:00:48.353
and I gave it to my husband,
and he ate it.

01:00:48.478 --> 01:00:49.896
He didn't say a word,
but apparently...

01:00:50.021 --> 01:00:52.065
I used soy sauce
instead of gravy browning.

01:00:52.190 --> 01:00:53.775
[laughter]

01:00:53.900 --> 01:00:55.902
And he's here
in the audience, isn't he?

01:00:56.027 --> 01:00:59.030
- How was it, Jason?
- [JASON]: Tasty.

01:00:59.155 --> 01:01:01.449
[laughter]
Brilliant.

01:01:02.533 --> 01:01:04.952
I'm counting--
counting my blessings...

01:01:05.119 --> 01:01:06.746
I've got Jan, my wife.

01:01:06.871 --> 01:01:09.666
Yeah.
How long have you been married?

01:01:09.791 --> 01:01:13.961
- Fifty-five years.
- Wow, 55.

01:01:14.087 --> 01:01:16.172
[applause]

01:01:16.297 --> 01:01:21.511
So, I’m a local politician,
and I’m determined...

01:01:21.636 --> 01:01:24.931
to drive through
and make a difference.

01:01:25.056 --> 01:01:27.141
[applause]

01:01:28.309 --> 01:01:31.354
[WOMAN]: I relate a lot,
'cause my nan's had dementia...

01:01:31.479 --> 01:01:33.147
for about...
[whimpering]

01:01:33.314 --> 01:01:35.942
[KARIN]: Mm. Mm.

01:01:36.901 --> 01:01:39.570
As a society,
we sometimes feel embarrassed...

01:01:39.696 --> 01:01:43.366
about crying and emotion,
but we're not, are we?

01:01:43.491 --> 01:01:44.742
[people agreeing]
No.

01:01:44.867 --> 01:01:48.162
So, just tell it
through the tears.

01:01:51.499 --> 01:01:54.168
[KARIN]: I know, but don't worry
about it.

01:01:54.335 --> 01:01:55.837
Just come in.
Hi, Amanda.

01:01:56.003 --> 01:01:58.965
- You okay?
- Lovely to see you.

01:01:59.090 --> 01:02:00.633
[overlapping chatter]

01:02:00.758 --> 01:02:03.010
[KARIN]: Palm to palm,
breathe in.  [inhales deeply]

01:02:03.136 --> 01:02:06.055
For people living with dementia
and their families...

01:02:06.180 --> 01:02:12.228
that sense of group belonging,
and connection becomes vital.

01:02:12.353 --> 01:02:15.606
What happened on that day
was that it was me and my mum...

01:02:15.732 --> 01:02:18.609
left the hospital
with two things...

01:02:18.735 --> 01:02:21.904
a prescription
and a leaflet.

01:02:22.029 --> 01:02:25.658
And I just remember
feeling so alone.

01:02:26.534 --> 01:02:29.078
This is an invisible condition.

01:02:29.203 --> 01:02:33.040
It completely turns
your life upside-down...

01:02:33.166 --> 01:02:35.460
and yet nobody really
talks about it.

01:02:35.585 --> 01:02:37.962
People are frightened
to a certain extent.

01:02:38.087 --> 01:02:39.213
[people chattering]

01:02:39.380 --> 01:02:41.215
[KARIN]:
The diagnosis of dementia...

01:02:41.340 --> 01:02:44.469
is a life-changing moment.

01:02:44.594 --> 01:02:46.721
And when you get
life-changing moments...

01:02:46.888 --> 01:02:51.934
if you're not processing that,
you're stuck.

01:02:52.059 --> 01:02:54.395
Come on-- come on up.
Come on up for a moment.

01:02:54.562 --> 01:02:55.730
Come on up.

01:02:55.897 --> 01:02:57.899
It is, it's a tough one,
that, because...

01:02:58.065 --> 01:03:00.276
When we start to shift
the trauma

01:03:00.401 --> 01:03:04.155
and we start to shift
the fear of what's to come...

01:03:04.280 --> 01:03:05.907
it can really help.

01:03:06.073 --> 01:03:09.911
I can't sing though.
[laughter and chatter]

01:03:10.077 --> 01:03:11.579
You didn't go through all that..

01:03:11.704 --> 01:03:13.080
just to get out of the song,
did you?

01:03:13.247 --> 01:03:14.165
Yeah.
[laughter]

01:03:15.291 --> 01:03:17.919
[music]

01:03:22.673 --> 01:03:24.467
[WALTER]:
I met Sarah, my wife...

01:03:24.634 --> 01:03:28.930
because we were both working
in issues in aging and health.

01:03:29.931 --> 01:03:31.933
In the last couple years,
I learned...

01:03:32.099 --> 01:03:34.769
that both my older half-brother
and older half-sister...

01:03:34.936 --> 01:03:38.731
were living with dementia.

01:03:39.732 --> 01:03:40.983
It just never even
occurred to me...

01:03:41.150 --> 01:03:42.819
that there would be
a chance for me...

01:03:42.985 --> 01:03:44.904
to have Alzheimer's disease.

01:03:46.322 --> 01:03:48.407
I think I realized at one point
that this is something...

01:03:48.574 --> 01:03:51.369
that's going to continue to
be part of my family's story.

01:03:51.536 --> 01:03:54.205
This is not just
my dad's experience.

01:03:54.997 --> 01:03:56.833
You wanna go for 14?

01:03:57.333 --> 01:03:59.377
Um, why not just an even 15?

01:03:59.627 --> 01:04:01.838
All right, fundraising goal,
$15,000.

01:04:02.004 --> 01:04:03.381
- Yeah.
- What will that take...

01:04:03.548 --> 01:04:04.966
your lifetime
fundraising goal up to?

01:04:05.132 --> 01:04:06.384
I don't know, that's a good...

01:04:06.551 --> 01:04:09.095
[WALTER]: This year is the 29th

01:04:09.262 --> 01:04:11.806
since I first went on...

01:04:11.973 --> 01:04:13.641
the Walk to End
Alzheimer's Disease.

01:04:13.808 --> 01:04:15.935
[cheers and applause]

01:04:16.143 --> 01:04:18.813
[WOMAN]: Also, congrats to
our top friends and family...

01:04:18.980 --> 01:04:22.859
[WALTER]: We don't really have
a system that provides...

01:04:23.568 --> 01:04:26.320
long-term services
and supports in this country.

01:04:26.737 --> 01:04:29.615
I felt at that age, that
that was not right...

01:04:29.782 --> 01:04:32.201
that we could and should
do better.

01:04:32.368 --> 01:04:36.205
And I still
believe that today, right?

01:04:36.372 --> 01:04:39.000
[music]

01:04:40.835 --> 01:04:43.671
[DANA]: My mother had gotten
kicked out of memory care....

01:04:43.880 --> 01:04:45.756
down in New York City.

01:04:47.633 --> 01:04:49.176
She started going like this...
[slapping leg]

01:04:49.594 --> 01:04:52.680
So, they put her more and more
on her own...

01:04:52.847 --> 01:04:55.516
and she got more
and more disruptive.

01:04:56.350 --> 01:04:58.936
And I remember saying,
she's just telling us...

01:04:59.103 --> 01:05:01.856
this isn't working
to live with strangers.

01:05:05.776 --> 01:05:07.695
I think being a medical
anthropologist...

01:05:07.945 --> 01:05:12.867
gave me the tools to live
the sickness differently.

01:05:13.868 --> 01:05:15.286
As a medical anthropologist...

01:05:15.828 --> 01:05:18.789
I look at medical systems
as cultural systems.

01:05:19.290 --> 01:05:22.543
I look at all of the beliefs
and the practices...

01:05:22.877 --> 01:05:25.755
surrounding sickness and health.

01:05:28.049 --> 01:05:31.844
Biomedicine focuses in
just on the one sick person...

01:05:32.303 --> 01:05:33.721
whereas other medical systems...

01:05:33.888 --> 01:05:35.932
recognize that it's the whole
family unit...

01:05:36.098 --> 01:05:38.017
that's experiencing something.

01:05:39.143 --> 01:05:41.771
Family members know things
that other people don’t know...

01:05:41.938 --> 01:05:43.898
so they are the ideal carers.

01:05:44.065 --> 01:05:46.734
But they need absolute support.

01:05:48.277 --> 01:05:50.237
When I found where
she would go next...

01:05:50.446 --> 01:05:52.281
and I explained, you’re
going to go to a school...

01:05:52.490 --> 01:05:55.159
for people with
Alzheimer's disease...

01:05:55.326 --> 01:05:58.079
she said, "Oh, good,
I love school."

01:05:58.245 --> 01:06:03.709
And then-- yeah-- and then
all those behaviors evaporated.

01:06:09.298 --> 01:06:12.843
So many people get
antipsychotics thrown at them...

01:06:13.177 --> 01:06:18.015
instead of the rest of us
first trying to figure out...

01:06:18.349 --> 01:06:20.601
how we can meet them
where they are.

01:06:20.810 --> 01:06:23.437
[music]

01:06:36.117 --> 01:06:40.413
The last place my mother lived,
there was an art therapist.

01:06:41.288 --> 01:06:43.791
She said that when
someone's very agitated...

01:06:44.000 --> 01:06:48.087
the thing to do is to help them
paint stripes across a page...

01:06:48.254 --> 01:06:52.341
using blues,
and magentas, and violets.

01:06:57.346 --> 01:06:59.140
I wouldn't have believed
that it would have made...

01:06:59.306 --> 01:07:01.767
that much of a difference,
but sure enough...

01:07:01.934 --> 01:07:05.062
after about five minutes
of me helping her...

01:07:05.229 --> 01:07:07.481
go from left to right,
left to right...

01:07:07.690 --> 01:07:09.650
my mother turned up
and looked at me and said...

01:07:09.859 --> 01:07:13.404
"That's very relaxing."
[laughing]

01:07:18.242 --> 01:07:21.078
She made nice artwork
before dementia.

01:07:21.245 --> 01:07:24.707
But during dementia,
she made gorgeous artwork.

01:07:30.504 --> 01:07:32.590
The usual pattern is
to be brokenhearted...

01:07:32.757 --> 01:07:34.133
about what's lost.

01:07:34.300 --> 01:07:39.013
You can still mourn that,
but keep yourself open...

01:07:39.180 --> 01:07:41.098
to what's arriving anew.

01:07:43.601 --> 01:07:46.228
That's what this
particular piece is about.

01:07:46.395 --> 01:07:49.065
It's based on a poem
by a friend of mine...

01:07:49.231 --> 01:07:51.901
Julie Larios, called
"Frontotemporal Dementia."

01:07:52.902 --> 01:07:54.987
So, the epigraph
to the poem says...

01:07:55.279 --> 01:07:58.157
"John began to tell his friends
of his new ability...

01:07:58.365 --> 01:08:01.243
"to see not only colors,
but sounds.

01:08:01.410 --> 01:08:03.871
"About the same time, he
began to have troubles...

01:08:04.038 --> 01:08:06.040
"remembering words.

01:08:08.167 --> 01:08:10.503
"There were
tall fronds swaying...

01:08:10.669 --> 01:08:12.254
"like yellow always does...

01:08:12.421 --> 01:08:15.549
"but down an octave,
and people moaning.

01:08:15.716 --> 01:08:19.095
"When I'm open, everything
goes from green to gold.

01:08:19.261 --> 01:08:22.264
"I feel rain two days off
come closer.

01:08:22.431 --> 01:08:24.183
"If that barking--
But when I drew it...

01:08:24.350 --> 01:08:26.102
"the way it sounded, luminous...

01:08:26.268 --> 01:08:28.229
"people who say they
know me understood...

01:08:28.896 --> 01:08:30.564
"and they took me to my bed.

01:08:31.941 --> 01:08:35.069
That was an opera.
That was purple."

01:08:40.783 --> 01:08:42.910
[paper tearing]

01:08:45.204 --> 01:08:49.333
Typically, we always think
of dementia...

01:08:49.500 --> 01:08:53.045
in terms of the holes,
the deficits.

01:08:54.839 --> 01:08:59.468
So, I'm gonna fill the holes
with gorgeous colors.

01:09:03.347 --> 01:09:05.057
I mean, the peom’s
heartbreaking...

01:09:05.224 --> 01:09:07.518
and gorgeous at the same time.

01:09:07.685 --> 01:09:13.274
And I think that if we look
at dementia that way too...

01:09:13.440 --> 01:09:15.818
we can find both the beauty
and the heart...

01:09:15.985 --> 01:09:17.444
You know, the heartbreak,
I don't think...

01:09:17.611 --> 01:09:19.822
we have to just deny it, but
I think what we want to do...

01:09:19.989 --> 01:09:22.283
is transform it
into something else.

01:09:23.159 --> 01:09:25.578
[music]

01:09:51.145 --> 01:09:53.230
What I'm doing right now
is called a monoprint.

01:09:53.397 --> 01:09:56.233
When you're making a print,
you're applying paint...

01:09:56.400 --> 01:10:00.070
on this other surface,
and then it gets transferred.

01:10:02.156 --> 01:10:05.910
And as it transfers,
some magic happens.

01:10:10.039 --> 01:10:11.457
A thing about printmaking...

01:10:11.665 --> 01:10:13.959
is that you're working
backwards.

01:10:14.460 --> 01:10:17.087
Whatever you're making gets
printed onto a sheet of paper...

01:10:17.254 --> 01:10:19.006
it will be flipped over.

01:10:19.173 --> 01:10:22.218
You've got to use
your brain differently.

01:10:22.384 --> 01:10:24.762
I have to write words backwards.

01:10:26.013 --> 01:10:28.515
So, again,
that brings in magic...

01:10:28.682 --> 01:10:31.602
and maybe that's part of why
I look at dementia as magic.

01:10:31.769 --> 01:10:34.521
I'm used to sort of knowing
that the magic...

01:10:34.688 --> 01:10:37.566
is in the unexpected, and
the magic is in the thing...

01:10:37.733 --> 01:10:39.985
that's outside of our control.

01:10:43.739 --> 01:10:45.658
[sighs]

01:10:55.084 --> 01:10:57.920
[water softly lapping]

01:11:07.263 --> 01:11:09.640
[KARIN]: The creative work
enables people...

01:11:09.765 --> 01:11:12.601
to sometimes reconnect
to themselves.

01:11:15.229 --> 01:11:17.731
Ideally, you know,
I would be setting up groups...

01:11:17.856 --> 01:11:20.234
around the world for people
post-diagnosis...

01:11:20.401 --> 01:11:22.903
in the early stages...

01:11:23.028 --> 01:11:25.281
that are able to
start  to process....

01:11:25.406 --> 01:11:28.617
through a life-story prism,
their experience.

01:11:29.743 --> 01:11:33.455
Well, my situation is,
I've got it.

01:11:33.580 --> 01:11:36.041
I'm like my father,
I don't give up.

01:11:36.917 --> 01:11:38.585
Nothing will beat me.

01:11:38.711 --> 01:11:42.881
[KARIN]: The group do want to
talk about living with dementia.

01:11:43.007 --> 01:11:45.634
But they're also
very passionate advocates...

01:11:45.759 --> 01:11:48.929
for the rights of people
living with dementia.

01:11:49.763 --> 01:11:53.434
We need people to educate,
to be educated.

01:11:54.685 --> 01:11:56.312
We need funding.

01:11:57.271 --> 01:11:59.648
But nothing happens.

01:12:01.108 --> 01:12:03.277
In general wards,
they cannot sleep.

01:12:03.444 --> 01:12:07.197
"Why don't those damn dementia
patients just shut up?"

01:12:09.033 --> 01:12:10.659
And nothing happens.

01:12:12.411 --> 01:12:15.122
This man said,
"People like you...

01:12:15.247 --> 01:12:17.666
"shouldn't be allowed
out in society.

01:12:18.751 --> 01:12:21.795
People like you are dangerous
to the likes of us."

01:12:21.920 --> 01:12:26.467
Not one person helped us.
Everybody else joined in.

01:12:30.971 --> 01:12:36.310
Nick faces every day with all
the perseverance he can muster.

01:12:37.436 --> 01:12:39.188
Nick  goes on very long
long walks, don't you?

01:12:39.313 --> 01:12:41.648
Yes. Hours.

01:12:42.983 --> 01:12:44.818
Keeps him fit.

01:12:44.985 --> 01:12:45.986
And...

01:12:46.153 --> 01:12:48.697
[laughter]

01:12:48.822 --> 01:12:53.827
We are Nick and Karen,
Mum and Dad...

01:12:53.994 --> 01:12:55.788
Nana and Grandpa.

01:12:56.955 --> 01:12:59.208
We're in this together.

01:12:59.333 --> 01:13:03.045
So, we might be
a new Nick and Karen...

01:13:03.170 --> 01:13:07.549
but we are Nick and Karen
nonetheless.

01:13:09.343 --> 01:13:12.179
[applause]

01:13:15.182 --> 01:13:18.018
[KARIN]: Some of the worst
sort of traumas...

01:13:18.143 --> 01:13:21.021
are silenced,
and not intentionally.

01:13:21.188 --> 01:13:23.357
It's just, we find it
as a society...

01:13:23.524 --> 01:13:27.236
sometimes a little bit
difficult and scary because...

01:13:27.361 --> 01:13:29.196
there's so much stigma...

01:13:29.321 --> 01:13:32.741
to actually just stop
and listen.

01:13:36.370 --> 01:13:38.497
[HELEN]:
All my beautiful memories.

01:13:44.211 --> 01:13:46.213
I have a job to do
to make life better...

01:13:46.380 --> 01:13:47.881
for people with dementia.

01:13:48.924 --> 01:13:52.344
I certainly have challenged
every politician I can find.

01:13:52.469 --> 01:13:55.180
I've addressed all kinds
of conferences.

01:14:02.187 --> 01:14:03.605
Ah.

01:14:06.191 --> 01:14:07.901
There's something else missing.

01:14:08.026 --> 01:14:09.862
With the Alzheimer's Society
of Ireland...

01:14:09.987 --> 01:14:13.407
the opportunity came up for me
to represent them in Europe.

01:14:16.076 --> 01:14:18.912
We have lots of people
that talk about us...

01:14:19.037 --> 01:14:23.542
so I suppose it goes back to--
nothing about us without us.

01:14:27.713 --> 01:14:29.506
I could go on for hours
about traveling...

01:14:29.631 --> 01:14:31.091
and the difficulties at
airports...

01:14:31.258 --> 01:14:33.260
and the difficulties
we experience.

01:14:35.095 --> 01:14:36.513
I am going to get lost.

01:14:36.638 --> 01:14:39.600
I am going to get
an anxiety attack, for a start.

01:14:41.935 --> 01:14:43.437
Many airports
only give you assistance...

01:14:43.604 --> 01:14:44.771
if you're in a wheelchair.

01:14:44.897 --> 01:14:46.106
And where do I get
assistance?

01:14:46.231 --> 01:14:47.441
So, for the assistance...

01:14:47.566 --> 01:14:48.609
[HELEN]: So, I can be
rest assured...

01:14:48.775 --> 01:14:50.277
that when I get off that plane..

01:14:50.402 --> 01:14:53.155
at the end of the steps
waiting for me is my chair.

01:14:53.447 --> 01:14:54.907
All right, thank you very much.

01:14:55.032 --> 01:14:56.575
Thank you, bye-bye.

01:14:56.700 --> 01:15:00.120
I can walk,
I can see, I can talk.

01:15:00.245 --> 01:15:01.788
I just can't remember.

01:15:03.790 --> 01:15:04.917
I'm sorry, I walk.

01:15:05.042 --> 01:15:06.126
Huh? Oh, you can walk?

01:15:06.293 --> 01:15:07.794
Yes, thank you.

01:15:07.961 --> 01:15:09.338
Thank you.

01:15:10.464 --> 01:15:12.299
We just want people
to be aware...

01:15:12.466 --> 01:15:14.343
that we have
a hidden disability.

01:15:15.594 --> 01:15:18.472
Jesus, did I take it with me?
Hold on, did I?

01:15:19.806 --> 01:15:20.682
Yes.

01:15:20.807 --> 01:15:22.309
And that our hidden disability..

01:15:22.476 --> 01:15:24.561
can create anxiety,
when all we need...

01:15:24.686 --> 01:15:26.939
is somebody
to walk us through an airport.

01:15:27.064 --> 01:15:28.649
Are you working here long?

01:15:28.815 --> 01:15:31.818
It's just about
making life simple.

01:15:31.944 --> 01:15:34.947
All I want to see is inclusion,
that we are fully included...

01:15:35.072 --> 01:15:37.366
and fully integrated
into our communities.

01:15:39.451 --> 01:15:41.662
Twenty years ago,
the idea of having a person...

01:15:41.828 --> 01:15:44.581
living with dementia
speak at conference...

01:15:44.706 --> 01:15:46.875
would have been unimaginable.

01:15:47.668 --> 01:15:49.670
Our role in the European
Working Group...

01:15:49.836 --> 01:15:52.256
of People With Dementia,
it's about changing policy.

01:15:52.381 --> 01:15:54.091
It's about looking at research.

01:15:54.216 --> 01:15:58.554
Stephan will speak about
his desire to be independent.

01:15:59.721 --> 01:16:01.974
[applause]

01:16:07.396 --> 01:16:10.023
[music]

01:16:14.069 --> 01:16:15.571
Today has been really hard...

01:16:15.696 --> 01:16:20.492
because it's so much harder
when you see the pain...

01:16:20.617 --> 01:16:22.869
that others are going through.

01:16:23.036 --> 01:16:25.706
I feel my own pain,
but you know...

01:16:25.872 --> 01:16:28.875
the struggles they have, and
when we have these sessions...

01:16:29.042 --> 01:16:32.254
when we're all speaking,
it's much more difficult.

01:16:32.379 --> 01:16:34.590
[people chattering]

01:16:34.715 --> 01:16:36.925
I meet different people...

01:16:37.050 --> 01:16:39.720
at different levels
of progression.

01:16:40.679 --> 01:16:43.307
And you think that's you.

01:16:43.432 --> 01:16:44.474
That's gonna be me.

01:16:44.600 --> 01:16:46.893
[people chattering]

01:16:47.060 --> 01:16:48.895
You know, you're faced
with your own mortality.

01:16:49.062 --> 01:16:52.899
But my mortality
is maybe not about my death.

01:16:53.025 --> 01:16:55.402
It's the death-- it's the death
of my brain.

01:16:55.569 --> 01:16:57.279
It's the dying brain.

01:16:58.405 --> 01:17:00.407
I will go home
and I will be tired.

01:17:00.574 --> 01:17:02.242
[Helen thanks participants]

01:17:02.367 --> 01:17:04.578
Thank you.
[laughter]

01:17:04.745 --> 01:17:06.413
I'll pick myself up again
next  week...

01:17:06.538 --> 01:17:07.789
and I'll start all over.

01:17:07.914 --> 01:17:12.878
But I know from Twitter
and social media...

01:17:13.003 --> 01:17:16.965
that I have made an impact.

01:17:18.508 --> 01:17:20.093
[music]

01:17:20.260 --> 01:17:22.095
[BOY]: Hello, Helen.

01:17:22.220 --> 01:17:24.765
Oh my God Almighty!

01:17:24.931 --> 01:17:26.141
Hello!

01:17:26.266 --> 01:17:28.101
What's your name?

01:17:28.226 --> 01:17:30.395
- Erin.
- And?

01:17:32.147 --> 01:17:33.482
How are you?

01:17:33.607 --> 01:17:35.275
What are you doing around
all these boys?

01:17:35.442 --> 01:17:36.943
Hello.
How are you?

01:17:37.069 --> 01:17:40.113
A sense of purpose
I think has a major impact...

01:17:40.238 --> 01:17:41.823
on our health.

01:17:43.533 --> 01:17:48.080
Honestly, it just gives me such
a great sense of well-being...

01:17:48.205 --> 01:17:52.459
and such a great sense
of the person that I am...

01:17:52.626 --> 01:17:53.919
the person that I always was...

01:17:54.044 --> 01:17:55.712
that I thought
was taken away from me.

01:18:08.016 --> 01:18:11.978
[JILL]: I love you, Don,
with all my heart.

01:18:13.188 --> 01:18:15.023
With all my heart.

01:18:15.941 --> 01:18:19.027
You stay here as long
as it's good for you.

01:18:20.237 --> 01:18:23.824
You stay here as long
as it's good for you...

01:18:23.949 --> 01:18:26.785
and you're comfortable,
and not in pain.

01:18:28.995 --> 01:18:30.831
And I'll be okay...

01:18:30.956 --> 01:18:33.458
'cause you'll always be with me.

01:18:43.844 --> 01:18:45.053
Mm.

01:18:46.346 --> 01:18:48.348
I like this.

01:18:48.515 --> 01:18:50.142
I'm happy.

01:18:51.852 --> 01:18:52.936
I'm here.

01:18:58.400 --> 01:19:01.194
[KARIN]: [inhales deeply]
And let it out.

01:19:01.361 --> 01:19:03.822
[all breathing out]

01:19:04.698 --> 01:19:06.533
Lovely, Jeannette,
that's amazing.

01:19:06.658 --> 01:19:07.951
Let's do that one more time.

01:19:08.076 --> 01:19:10.537
Jeannette,
I absolutely love Jeannette.

01:19:10.662 --> 01:19:13.498
Um... yeah.

01:19:13.623 --> 01:19:15.876
Yeah, it's quite emotional,
actually.

01:19:18.336 --> 01:19:20.213
GROUP:
♪ Then it starts a-rocking... ♪

01:19:20.338 --> 01:19:21.590
Yeah.

01:19:21.715 --> 01:19:23.550
♪ Like a motorboat♪

01:19:23.717 --> 01:19:26.052
♪ Oh, whoa ♪

01:19:26.219 --> 01:19:32.851
♪ I never knew
anyone like you ♪♪

01:19:32.976 --> 01:19:35.437
- Ah.
- Well done, well done.

01:19:35.562 --> 01:19:38.732
[KARIN]: Words are now becoming
very difficult for her.

01:19:40.066 --> 01:19:44.237
And people were just
gutted for her, just sad.

01:19:44.362 --> 01:19:48.617
But there was this drive to,
how do we help her?

01:19:48.742 --> 01:19:50.076
What can we do?

01:19:50.243 --> 01:19:53.455
And so, we started to do
some movement exercises...

01:19:53.580 --> 01:19:56.166
and I realized that
within the movement...

01:19:56.291 --> 01:20:01.087
Jeannette was finding a real
joy and a confidence.

01:20:01.463 --> 01:20:04.466
[applause]

01:20:06.843 --> 01:20:09.721
[MAN]: What a fantastic turnout
for the walk this year.

01:20:10.388 --> 01:20:12.974
[people cheering]

01:20:15.060 --> 01:20:18.814
[CLARA]: Oh, it makes me feel
good. Proud.

01:20:23.610 --> 01:20:24.820
[WALTER]:
What would I want to say...

01:20:24.986 --> 01:20:27.113
to that eight-year-old boy...

01:20:27.239 --> 01:20:29.491
after everything
that I've gone through?

01:20:31.326 --> 01:20:36.289
Don't give up hope,
and keep up the fight.

01:20:38.208 --> 01:20:39.793
That's what I would say.

01:20:43.630 --> 01:20:45.131
I want to find solutions...

01:20:45.298 --> 01:20:47.133
to a better quality of life
for all.

01:20:48.218 --> 01:20:49.761
This is the world
I want to live in...

01:20:49.886 --> 01:20:51.179
ladies and gentlemen.

01:20:52.138 --> 01:20:53.932
Until that great,
great cure comes...

01:20:54.057 --> 01:20:55.684
you can have a quality
of life.

01:20:55.809 --> 01:20:58.186
Thank you for listening to me,
it means a lot.

01:20:58.311 --> 01:21:00.564
[applause]

01:21:01.439 --> 01:21:02.649
I think with knowledge...

01:21:02.774 --> 01:21:05.151
we become more empowered,
you know?

01:21:05.277 --> 01:21:09.948
When people start to understand
some of the causes of dementia.

01:21:10.073 --> 01:21:12.659
When people start to
understand what to expect...

01:21:12.826 --> 01:21:14.703
when someone has dementia.

01:21:14.828 --> 01:21:16.538
When people start to know
how to care...

01:21:16.663 --> 01:21:20.709
for someone with dementia,
this will change perceptions.

01:21:21.334 --> 01:21:24.045
[piano music playing]

01:21:25.672 --> 01:21:27.883
[KARIN]: If I could wave
a magic wand...

01:21:28.008 --> 01:21:29.676
I would be dancing
with Jeannette...

01:21:29.801 --> 01:21:33.889
every hour of every day
for the rest of her life...

01:21:33.889 --> 01:21:36.224
until she wanted
to stop dancing.

01:21:36.349 --> 01:21:38.977
[music continues]

01:21:43.148 --> 01:21:44.733
That's what she needs
right now...

01:21:44.900 --> 01:21:47.277
is she needs
to continue to dance.

01:21:51.740 --> 01:21:54.242
There are things
you can experience...

01:21:54.367 --> 01:21:58.830
that are brilliant
after diagnosis.

01:22:07.672 --> 01:22:09.591
With the right support...

01:22:09.758 --> 01:22:12.802
with the right set
of ingredients...

01:22:12.928 --> 01:22:15.889
that allow you to thrive.

01:22:19.601 --> 01:22:21.645
Can we find the key?

01:22:21.770 --> 01:22:23.855
Can we find that moment...

01:22:23.980 --> 01:22:29.361
that key to unlock them,
to unlock the door to them.

01:22:32.572 --> 01:22:34.824
[applause]

01:22:34.950 --> 01:22:37.786
[music continues]

01:22:42.582 --> 01:22:45.460
[cheers and applause]

01:22:58.431 --> 01:23:01.101
[piano music playing]