0:08

Hello and

0:08

Welcome to FlashForward. I'm Rose,

0:11

and I'm your host. Today,

0:13

we are going to talk about the technology piece

0:15

of welcome to Vanguard Estates. Again,

0:17

this is one of five episodes about the

0:19

real stuff that inspired the story. So if you

0:21

haven't listened to it and you care

0:23

about having certain elements of the story spoiled,

0:26

Now is the time to hit pause on this episode

0:28

and go listen to the series.

0:31

Okay. Great. Now, let's

0:33

talk about tech. And I wanna start

0:35

with Missy. Hello, Marcus.

0:37

Nice to meet you. Missy

0:40

was loosely inspired by a real service

0:42

called care dot coach.

0:44

We

0:44

coach people to improve self

0:47

care and health care outcomes. And

0:49

the dot means that

0:51

we do it through technology.

0:53

That's

0:53

Victor Wang, the CEO of Care dot

0:55

Coach. You have heard Victor on the show

0:57

before back in twenty eighteen.

1:00

care dot coach is not robots.

1:03

Their system works via an app on

1:05

a tablet. Well,

1:06

it looks like a a do I have a little dog

1:08

or cap most of the time. The avatar

1:12

is the face for an

1:14

entire global team of

1:16

empathic and intelligent

1:18

and caring people who would

1:20

call health advocates. And we

1:22

hire them like in the Philippines and Latin

1:24

American countries for Spanish and staff

1:27

the Avatar with all these great people

1:30

and thereby, partially

1:33

solve the caregiver crisis. Basically,

1:36

what the app does is it consolidates

1:38

a whole team of people into one

1:40

avatar. that the user engages

1:42

with. And that cat or dog

1:45

does everything from medication reminders

1:47

to talking people through physical therapy

1:49

to just general social

1:51

conversations. And they

1:53

picked the dog and cat avatars for

1:55

a couple of reasons. For one thing, there is

1:58

evidence that animal therapy has benefits

1:59

even if that animal is a

2:02

Robots. But there is another reason

2:04

too. People

2:05

also tell their dog all sorts of stuff. They

2:07

don't even tell their own family members.

2:10

If we had a met a guy wake up

2:12

his his little dog, Avatar, I

2:14

think you call them buddy, people

2:16

call gravitas, all sorts of

2:18

things like sparkle, and

2:21

they'll capitan, and things like that. I

2:23

think it was Buddy. He's

2:25

like, hey, buddy. I I fell in the shower.

2:28

Kinda banged up. I think I'm okay, but

2:30

can you stay with me and make sure I'm okay?

2:32

But don't tell my daughter because

2:35

she's gonna put me in a nursing home if

2:37

she finds out a falling of the shower. Now

2:40

I asked Victor, okay, like in that

2:42

situation, did you tell the

2:44

daughter or does buddy keep

2:46

the secret? And the answer

2:49

is kind of complicated.

2:51

A lot of those decisions are coded

2:53

into the Estates. Care

2:55

dot coach isn't something you can easily

2:57

just go buy at the store or download

2:59

on your phone. They usually

3:02

work with specific health plans and

3:04

insurance programs. And each of those

3:06

health plans has specific rules

3:08

about what gets reported to who.

3:11

So there

3:11

there'll be certain certain types of things that

3:13

they want to escalate. Certain types of things they want

3:15

to go to, like, an after hours, like,

3:17

a nurse line, might have,

3:19

like, a suicide prevention line. They want us

3:21

to direct certain things towards.

3:23

They might have, like, a social

3:24

determinants of health. type

3:27

of pathway. And certain

3:29

organizations like to leverage

3:31

family members as much as possible.

3:35

and so you

3:36

might actually want us to directly

3:38

go to a family member. In

3:40

our story, one of the things that

3:42

the dad confesses to Missy is tech neglia

3:45

crime. And I asked Victor in

3:47

real life if someone told their

3:49

care dot coach, Avatar, that

3:51

they had committed a crime, what

3:54

would actually happen? I

3:56

think that depends on

3:58

the organization's policies

3:59

and, like, the nature of the supposed

4:02

crime. is

4:03

an element of common sense. You know?

4:05

Like,

4:07

like, are we

4:08

talking about, like, somebody smoked marijuana

4:10

in his state? that doesn't

4:13

allow marijuana or are we talking about?

4:15

Like, they're

4:16

the process of burning the building down.

4:18

So there's

4:21

a lot of cases, it's gonna be a judgment

4:23

call.

4:24

In our story, Marcus, the dad

4:27

gets really connected to the person

4:29

on the other end of his Robots. cat.

4:31

And that is a thing that

4:33

really does happen with people who use

4:36

these kinds of systems. A

4:38

couple of people completely bypass

4:41

the interface.

4:42

This is doctor

4:44

Amanda Lazar, an assistant professor at

4:46

the University of Maryland college of

4:48

information studies. And a few

4:50

years ago, she did a study on

4:52

these kinds of avatars. In

4:54

the study, one participant said that

4:56

they could tell who was on the other

4:58

end based on the sense of humor that

5:00

was coming through the little dog

5:03

Avatar. Another participant said

5:05

that she would ask certain questions

5:07

that she knew some teleoperators wouldn't

5:10

answer so that she could get to the one

5:12

that she wanted to talk to. I

5:14

think this is a really interesting thing

5:16

to think about because often

5:18

we assume that older people are

5:20

just going to simply sit back and

5:22

use the devices sort of exactly

5:24

the way they're told to.

5:27

But of course, nobody does

5:29

that. Right? We all find ways

5:31

around certain elements of our technology

5:33

try and get what we want. And

5:36

often, what older folks want

5:38

is relationships, contact,

5:41

social interaction, and

5:43

they will use technology to get that

5:45

in all kinds of interesting ways.

5:47

I'm socially isolated and I need

5:49

some connection. So I'm gonna turn my

5:51

temperature in my apartment up

5:53

above ninety two because I understand that

5:55

that's the point at which a telecare operator

5:57

calls me. and I'm gonna

5:59

have a social chat with that telecare

6:01

operator. This is doctor Clara Barreidge,

6:03

an associate professor at the University of

6:05

Washington School of Social Work.

6:07

I asked Victor what would happen if

6:09

someone, like the dad in our story,

6:12

asked for a worker's name or

6:14

location. Yeah.

6:15

Our health advocates are trained

6:17

not to go there.

6:19

And this was something that the users in

6:21

Amanda's study found kind

6:23

of frustrating. some

6:25

people were just so focused on that

6:27

human interaction that they could kind

6:29

of play around with the

6:31

system so they could get to those people that

6:33

they developed relationships with or

6:36

be less interested in because they

6:38

knew there were people in the third and that they weren't

6:40

that were not giving them a they

6:42

felt authentic

6:45

interaction, but they were expected to give an

6:47

authentic interaction of their own. One

6:50

participant in Amanda's study said, quote,

6:52

the digital pet can't really be a

6:54

friend to me because the people that

6:56

I talk to on the other end can't tell

6:58

me anything about their personal

7:00

lives. When someone asks me a question,

7:02

I answer the question. Then I ask

7:05

back, well, how about you? And what

7:07

do you do? And how do you feel? And

7:09

what do you like? Well, that didn't

7:11

go over very big because they're not supposed

7:13

to tell me who they are, where they are,

7:15

or what their families like. many children

7:17

they have and all of that?

7:21

We forget, I think, when we

7:23

design technologies

7:23

for older adults that people

7:26

don't want to

7:26

just be cared for relationships.

7:30

Many people do not want the relationship just

7:32

to be comforted or reached

7:34

out to in their social isolation. Right? They also

7:36

want to make genuine connections

7:38

with other people and help them and care about them. Have

7:40

some questions about their lives and their families and

7:42

things like that. So that was also something with

7:44

robotic pets we found where people some

7:46

people described how they wanted to be able to,

7:48

like, care for it.

7:50

too. Right? Whether that's like changing the

7:52

batteries in

7:52

like a more meaningful way,

7:54

they were happy they didn't have to clean the

7:56

poop anymore. Like, there were certain things

7:58

that were like, great. I'M HAPPY

7:59

NOW TO BE DOING THAT. Adrienne:

8:01

OF

8:02

COURSE, AVATARS ARE

8:04

NOT THE ONLY KIND OF TECHNOLOGY THAT

8:06

EXISTS TO HELP SENIORS.

8:09

communication

8:09

and engagement is the first

8:11

one I talk about.

8:12

Health and wellness,

8:14

learning and contribution, and

8:16

safety and security. So those are

8:19

the four

8:19

big categories.

8:21

This

8:21

is Laurie Orlev, the founder of aging

8:23

and health technology watch. She's

8:25

been tracking technologies related to aging

8:27

for over a decade. I'm probably the

8:29

first one who identified as such.

8:31

Her four categories of technology

8:34

encompass a whole bunch of different

8:36

types of devices, apps, and

8:38

services.

8:39

Email, virtual reality, so

8:41

offer applications, games, video,

8:43

cell phones, smartphones, tablets, smart

8:46

speakers,

8:46

voice assistance, and hearables. Mobile

8:48

health applications, telehealth,

8:51

medication management, disease

8:52

management, fitness trackers, voice Estates

8:55

and health related wearables.

8:57

Shall I

8:57

keep going? home

8:59

security systems, which is sort of the basics

9:01

in technology

9:02

for people who want to age in their own

9:04

home, voice

9:05

enabled health capabilities from smart

9:07

speakers,

9:08

cameras which are increasingly smart,

9:11

fall

9:11

detection technologies, home and

9:13

activity monitoring sensors

9:15

and radar.

9:17

Robots of stuff. From her

9:19

perspective, as an industry analyst,

9:21

Lori is watching a few sectors

9:23

in particular. One of them is

9:25

sensors. This can be everything from

9:27

a basic motion sensor light that

9:29

turns on when you walk by, all the way

9:31

up to much more complicated

9:33

detection devices.

9:35

Sensors that can tell you about

9:37

whether the stove has been

9:39

left on sensors

9:40

about your health, your heart

9:42

rate, blood pressure, your

9:44

personal temperature, and

9:46

camera based sensors

9:47

that can

9:49

detect what you're doing,

9:51

match

9:51

it up to some information about

9:53

you and make a suggestion, you know,

9:55

for through voice, for example, make a suggestion

9:58

about something you should change in your

9:59

behavior. In the first

10:01

episode, you heard Nikki talking about

10:04

using an Amazon Echo to set up the

10:06

lights and music to keep her

10:08

mom calm and relaxed during

10:10

sundown. She also uses

10:12

other sensor technology. So

10:14

the cameras phenomenal.

10:15

I love it because

10:18

when when my mom was in

10:20

her natural space,

10:22

she would do things that I would

10:25

my mind would be blown, like, why

10:27

are you hiding cookies

10:29

in the closet? What do you think? I'm

10:31

not gonna give you more. Like, you

10:33

know, so when I would when I

10:35

was able to find her doing those

10:37

things, it kinda helped me with assessing

10:39

how I should run her day to day. Like,

10:41

maybe give her an extra map

10:43

because obviously she's still hungry, but doesn't know how

10:45

to communicate that she's hungry. I do

10:47

have cameras that

10:49

also assists with caring for her

10:51

because they let me know. They

10:53

notify me through the app

10:55

when her body temperature has gone

10:57

down. or when she has

10:59

moved a little bit too much. So

11:02

I'm able to use

11:04

technology to kind of ease

11:06

all of the heaviness and

11:08

the weight of caring for someone who

11:10

is actively dying.

11:13

Another thing Laurie is watching along with

11:16

almost everybody else in the tech industry

11:18

in general is AI.

11:20

Software that can actually learn something

11:22

about your behavior, assemble the

11:24

data, and predict some possibility

11:26

of change in the future. I

11:28

think

11:28

that's the most interesting thing. And

11:30

it's not all that well involved this year,

11:33

but hopefully next year, It will

11:35

be more well involved and will be increasingly part

11:37

of technology offerings that serve

11:39

older adults. One

11:41

potential application is helping to

11:43

decode and understand nonverbal

11:46

kinds of communication.

11:48

Many folks with dementia struggle to

11:50

verbalize at some point or another.

11:52

But there are lots of ways a person

11:54

can show what they do or

11:56

don't like. The

11:57

application I think for AI is most interesting

11:59

is

11:59

actually kind of detecting people's

12:02

nonverbal signals because

12:04

we think of someone can't say, yes, I would

12:06

like to do that, please.

12:07

Or I'm having so much fun right

12:09

now that you know,

12:11

maybe they're not able to understand anything,

12:13

but then if you look at like the clinical

12:15

literature, there's all these observational measures of

12:17

engagement. Like is someone leaning forward during that

12:19

to me? For his

12:20

part, Victor and his team are already

12:23

incorporating AI into care

12:25

dot coach so that the system can

12:27

work faster and more autonomously.

12:29

Like,

12:29

for example, if somebody

12:32

says something to you, it takes you a

12:34

moment to be like, what is

12:36

a thoughtful empathic

12:38

some

12:38

sort of thing that I should say.

12:42

Okay. Let me say it and then you're able to

12:45

type it out. And then

12:46

you go, oh, I typed it wrong. You just fix

12:48

that. And then you have to hit enter,

12:50

ending well, your clients

12:52

or, you know, this person on the

12:54

other side like, waiting

12:56

for you and their avatar to

12:58

respond. So we're leveraging

13:01

some really cutting edge techniques to

13:04

take all the training data that we've built

13:06

and automate a lot of that and make that

13:08

faster. But

13:09

in the future, there might be apps and devices

13:12

where there isn't a human involved

13:14

at all. How

13:15

do you leap to that future where

13:18

AI is actually able to do this

13:20

kind of thing and build this type of trust

13:22

and, like, completely solve

13:24

the carrier risk shortage. There are

13:25

some big questions here that

13:27

involve discussions of out arithic

13:30

bias and what it really means

13:32

to care for someone. If

13:34

the users in Amanda's study wanted

13:36

a real authentic connection,

13:39

they're not going to get one

13:41

from an app. You

13:43

can't have a two sided conversation

13:45

about your kids or your lives

13:47

with an algorithm. And what

13:49

about all those sensors we talked about?

13:51

What are the ethics when it comes to

13:54

things like cameras installed in

13:56

people's spaces? Can

13:58

someone with dementia consent to

13:59

something like that? How do you

14:02

have that conversation?

14:04

So, like,

14:04

let's say your husband was like, I want to install

14:06

a camera our house to, like,

14:08

keep track of, like, safety wise,

14:10

making sure, like, the stove's not a I'll tell you how would

14:12

you feel about that. I'll tell them to boil her

14:14

off. Yep. Yeah. And I think there's

14:16

been a lot of tracking

14:19

implemented that's being

14:21

called for

14:22

health that's

14:24

actually being used for surveillance.

14:27

We are going to talk about that

14:29

and how to ethically design and

14:31

deploy some of these things. when

14:33

we come back. This

14:36

episode is sponsored in part by Tab for

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FlashForward by signing up at tab

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slash flash forward.

15:06

Okay. So technology can be

15:08

really useful in some situations. Nobody

15:11

is arguing that it can't.

15:13

But what's the right way to

15:15

design and use this stuff?

15:17

Let's start with design. A lot

15:19

of technology simply forgets

15:21

that seniors even exist

15:23

as a market or user base.

15:25

what does

15:26

our tech industry look like?

15:29

Right? Like who's designing them? And

15:30

what are their kind of mental models informing

15:33

things? who are they designing

15:35

things for?

15:36

That's Dr. Amanda Lazar again. And in

15:38

her work, she does a lot of thinking about what

15:41

older adults actually want

15:43

out of their technology. And Lori

15:45

Orlov, our industry analyst, says that there

15:47

are so many examples of tech

15:49

that is clearly not designed with

15:51

seniors in mind.

15:53

Where to tap on an iPad? I

15:55

would

15:55

say that's my best example. There's

15:57

a lot of screen area on an iPad. The other one

15:59

is the

15:59

Apple TV remote. There's

16:02

no clue on the remote where to

16:04

touch.

16:04

Now what it means? What does that big

16:06

circle button

16:07

thing mean or

16:09

and an iPad is

16:11

another one where there's a lot of blank

16:13

screen And

16:14

I've seen over people

16:16

pounding at various parts of it, trying to figure

16:19

out which part is gonna wake it

16:20

up.

16:21

When we get older, the conductance of

16:23

our skin actually changes,

16:25

which makes it physically harder

16:27

to use touch screen devices.

16:29

And this kind of thing contributes to the

16:32

idea that older adults are bad at

16:34

technology or aren't interested in

16:36

technology or can't understand technology.

16:39

But is

16:39

that really true? Older

16:41

adults. Like, the people

16:44

we

16:44

are considering leaders have experience the most

16:46

technological change of, like,

16:48

anyone ever. Right?

16:50

Like, advances that they've seen and

16:52

and kept up with in technology

16:54

are, like, a ridiculous

16:56

amount of change.

16:58

Many

16:58

of today's seniors were born before

17:00

credit cards, before commercial television,

17:03

before flu shots. They've

17:05

learned a lot about a lot of new technologies

17:07

over their lives. So the idea that

17:09

they simply can't learn

17:11

probably isn't true. Right?

17:14

And yet, I'm sure a lot of you have probably

17:16

had the experience of trying to walk

17:18

an older family member through tech

17:20

support to varying levels of

17:22

success. Right? So What is going

17:24

on here? There are a couple of things to say

17:26

about this. The first is baseline education.

17:29

So people who are younger have been taught

17:31

either in schools or in their workplace.

17:34

how to use a lot of these

17:36

things. Younger people have access not only

17:38

to actual classes in school on

17:40

how to use computers and the internet and all

17:42

that jazz, but also to like tech

17:44

support teams in offices. For a

17:46

lot of you listening, if there

17:48

is a new bit of technology that you need

17:50

to use for work, you have an actual team of

17:52

people whose job it is to teach you

17:54

how to use it at your company. Older

17:57

folks often have none of that.

17:59

since new

18:00

technologies are entering the market at all

18:03

times and old technologies become

18:04

obsolete, the question

18:07

really is how to

18:07

stay current. how motivated our people

18:10

to stay current. What is the

18:12

training

18:12

cycle, for example, to learn a new smartphone?

18:14

Is it even worth it to get

18:17

one? That last

18:18

question, is it even

18:20

worth it? Is also a good one?

18:22

Because honestly, sometimes it's

18:25

not For some people who have lived through

18:27

a hundred different new bits of technology,

18:30

staying up on the latest cell phone

18:32

is just not that

18:34

interesting. The COVID-nineteen pandemic

18:36

actually provides a pretty good example of

18:38

this when it comes to video chatting.

18:40

Older people start using Zoom

18:43

and you know, are still using it to connect with family members. And

18:45

that's

18:45

because the old ways of doing things weren't working,

18:48

but maybe the reason they didn't,

18:49

like, know how to use it before

18:52

and quote, was because they didn't have it

18:53

right. Everything was working. Why do you have to learn

18:56

this big thing? On top of

18:58

all of that, you have the fact that

19:00

off thin when seniors do try to learn

19:02

something new, they are treated like they

19:04

are incompetent babies, which isn't

19:08

fun. So why even

19:10

bother? Then you add

19:12

in dementia and you get another layer of

19:14

assumptions that those who

19:16

have cognitive Klein definitely cannot understand

19:18

what is happening with technology.

19:20

I asked Nikki for example if

19:22

she had ever asked her mom about

19:24

the cameras and how she felt about

19:27

them. I

19:27

don't know if she would understand what

19:30

it meant. having a camera

19:32

there. And, you know, having a

19:34

camera around, I I had to

19:36

do it in

19:37

the middle

19:39

stage So

19:40

that was, like, from stage four to five

19:44

because that's when things started getting

19:46

it started picking up. You know, she's moving

19:49

things and she might

19:52

be defecating on herself and

19:54

and and I don't know or

19:57

she might be wandering into a place that

19:59

is

19:59

not technically safe for

20:02

her. So I don't know

20:04

if she

20:04

understood what camera or

20:07

camera meant or video taping meant at

20:09

that time? I didn't start

20:11

off studying dementia. I worked with older adults,

20:13

not living with dementia. And when I would

20:15

present findings, the most common question is,

20:17

yeah, but this is all out the window when it's

20:20

dementia. And so that's sort

20:22

of why start to turn towards dementia.

20:24

That's Dr. Claire at Barriage

20:26

again. When Claire did start looking

20:28

at people with dementia, she found

20:30

that actually, often, that's not

20:33

true. And in my own research, I

20:35

found that people, adult

20:38

children, for example, would say,

20:40

no, I probably wouldn't involve

20:42

my my mother, for example,

20:44

in the decision about putting a camera

20:46

in or a sensor or location tracking because

20:48

I don't think she'd understand it.

20:50

I would then interview the parent,

20:52

you know, the the older adult.

20:55

And, you know, everybody understood it. I everybody

20:57

was capable of comprehending

21:00

the basic function of these technologies? Of

21:02

course, Clara has an advantage here.

21:04

Right? Part of her research is about

21:06

finding the best ways to

21:08

explain these tools to older folks and folks with

21:11

dementia. Not everybody has that

21:13

expertise. It's not necessarily easy.

21:16

But that is something that she's hoping to help

21:19

change. In the last couple of years, Claire has been

21:21

working on something called, let's

21:23

talk tech, which is essentially a method of walking

21:25

both people with dementia and

21:27

their care partners through various

21:30

technologies. So we piloted

21:32

it with twenty nine people

21:34

living with mild Alzheimer's disease

21:36

and their care partner, and all of them were

21:38

spouse, most of them were spouse as we had

21:40

one adult daughter who lived

21:43

together. And so we actually

21:45

found that it was successful on all

21:47

of our measures and it was really

21:49

great findings. We

21:50

were able to

21:52

significantly improve the care

21:55

partners' knowledge of what the person

21:57

that we had to mention wanted. we were

21:59

able to significantly

21:59

improve their their comprehension

22:02

of the technologies, both

22:04

the the care partner

22:07

and on a couple of the technologies

22:09

of personal area dementia. We talk

22:11

on this show all the time

22:13

about how important it is to involve

22:15

users in your design practice. And that's

22:17

true of folks with dementia too,

22:19

especially if your app or service or

22:21

device is supposed to be for

22:24

them. In fact, people with dementia have probably already

22:26

worked out some cool uses of

22:28

technology that you didn't even know

22:31

about. Aminda Lazar did one study talking to

22:33

people with dementia about their

22:35

technology use, and the participants described

22:37

their own bespoke often

22:40

very clever systems. The study

22:42

also included ideas that these folks

22:44

had for technologies they would

22:46

actually like to use. Take getting ready

22:48

for the day. How do you know what

22:50

to wear? You or I might look

22:52

at the weather or think about the

22:55

context of an event? Is it

22:57

work? social, some combination. But those

22:59

things can be really hard to do

23:01

when you have dementia. So

23:04

one participant wished for a device that could provide what

23:06

she called social background information,

23:09

including, quote, how I need to be

23:11

presented so that I can feel I

23:13

can participate like everybody

23:15

else. And the study also

23:17

showed that sometimes folks with

23:19

dementia actually tailor the

23:21

technology they use not

23:23

based on their own desires, but

23:25

based on what they think their

23:27

loved ones want and

23:29

need. One

23:29

participant in the study said, she was

23:32

comfortable with like a geofencing

23:34

application. She wanted to use it,

23:36

but she thought it'd be

23:37

too hard for her daughter,

23:39

so she didn't. because,

23:41

like, emotionally for her doc. Right? Her daughter wasn't ready

23:43

for that. The consequences

23:45

of these assumptions, the assumption

23:47

that people with dementia or just

23:50

older people in general can't possibly understand

23:53

questions about technology are very

23:55

real. Often in

23:57

facilities, stuff is installed without

23:59

talking to the residents at

24:02

all. I interviewed

24:03

residents once at a high end nursing

24:05

home. This was a few years ago. and

24:08

they described to me this

24:10

device above their beds

24:12

and they did not know what

24:13

it was. They had not been consulted about

24:16

it or informed if it was even in use and they

24:18

found it really disturbing. And from their description,

24:20

I think it was probably

24:21

a sensor over their bed.

24:22

Now, often, cameras and

24:25

sensors are installed in facilities

24:27

as a money saving effort,

24:29

not necessarily because they are best

24:32

for care. residential care

24:34

agencies primarily at that time in the world of

24:36

intellectual and developmental disability services

24:38

in the home, like

24:39

adult family homes,

24:42

for example, We're putting cameras in residents bedrooms

24:44

and removing their staff from the building

24:46

at night, so they can monitor the

24:48

feed from multiple

24:49

cameras all at once. And

24:51

then ideally rush in

24:53

if there's a problem, send somebody.

24:55

And then the drive, of course, to do

24:57

that was cost savings and workforce shortages.

24:59

We're gonna

25:00

talk a lot more about this and the ways

25:02

that surveillance in the workplace impacts

25:05

care next week when we talk about the

25:07

economics of this world. but

25:09

it's not just facilities that make

25:11

executive decisions about technology

25:13

on behalf of people. Other

25:15

times, it's the families that are making

25:18

decisions without their loved ones consent. One

25:20

woman in

25:20

particular that really stands out for

25:23

me, she had presented the idea

25:25

to her mother of

25:27

using a sensor system

25:28

that her HUD senior housing

25:32

program was offering, and her mom said,

25:34

I don't think I'd like that. and

25:36

her sisters, the adult

25:38

daughter sisters, agreed with their mother and

25:40

said, absolutely, that's an innovation of

25:42

our mom's privacy, but because

25:44

this adult daughter was the power of attorney,

25:46

she decided to use it regardless.

25:48

So she decided to get a

25:51

three sixty degree web camera and put that in her mom's

25:53

apartment. And then she, you know, showed me

25:55

you know, she pulled out her phone and showed me her interior

25:57

of her mom's apartment.

25:59

And so it just made

26:01

me realize, wow, her mom didn't even want the

26:03

sensors, and she ended up with this this

26:06

camera. We talk

26:07

on this show all the time about

26:09

the importance of consent and privacy and

26:12

being able to make your own

26:14

informed decisions about what

26:16

kinds of information is being gathered and shared

26:18

about you. So why

26:20

are so many people quick to

26:22

throw all of that out the

26:24

window? when

26:24

someone is older. And

26:26

the potential drawbacks here aren't just

26:28

some kind of theoretical violation

26:30

of someone's wishes. The

26:33

consequences of someone else making

26:36

decisions for you are

26:38

really steep in dementia because it

26:40

could involve, for example, you

26:43

no longer living in your home

26:45

and being sent to an assisted

26:47

living facility.

26:48

Remember, period?

26:50

So for example,

26:50

there are sensor systems that claim to

26:52

be able to help track someone's

26:55

progress as they age. These

26:56

sensors could detect changes

26:59

in someone's movements or voice

27:01

or habits, and decide that

27:03

they now fall into a

27:06

new category. either a new

27:08

diagnosis or into a new

27:10

stage of dementia, for example.

27:12

And that might change what they are

27:14

allowed to do. or where they're

27:17

allowed to live? We're

27:19

like, oh, AI,

27:19

this is gonna detect progression of dementia. It's

27:21

gonna be so

27:22

great, you know. We're detect the presence

27:25

of dementia. which is like great in

27:26

terms of, you know, maybe looking at

27:29

pharmacological treatments and

27:31

understanding more. but it's

27:33

very very charged when you're a person with

27:36

dementia, kind of like coping with

27:38

life.

27:38

Right? sometimes we don't talk

27:40

to people and beliefs of our dementia, but

27:41

they're actually in a living

27:43

situation where if

27:44

they have, you

27:46

know, advanced cognitive impairment, or

27:48

dementia, they're gonna be kicked out and, you

27:50

know, sent somewhere else. Or

27:52

what if

27:53

the person in question has

27:55

secrets that they don't want their kids to

27:58

know. So I remember

27:59

and I think she's about eighty five, an eighty

28:02

five year old woman, who was

28:04

living with acquired

28:06

disabilities and she needed significant assistance

28:08

from her daughter with whom she was actually very

28:10

close. And when

28:12

I was talking to her, I think it was about the

28:14

sensors. I interviewed her about various

28:16

technologies. And she said, well, what if

28:18

this hypothetical person you're telling me

28:20

about, this hypothetical a dog who needs

28:22

these sensors. What if she's in love? And what if she doesn't

28:24

want her daughter to know? And then

28:26

at the

28:26

end of my interview with this woman,

28:30

she indicated that she's very much in

28:32

love with another woman, and she feels like

28:34

she said, I remember because it was such a

28:36

random specific age She's like, I feel thirty

28:38

six again. And she

28:40

was beaming and so happy

28:42

talking about how being in love makes her

28:44

feel. So we came clear to

28:46

me that she didn't want her

28:47

daughter to know about that she was close to her daughter,

28:49

but there there are things that older adults still,

28:52

for whatever reason, their own reasons,

28:54

want to keep private. In

28:55

our series, there is a storyline in which our

28:57

narrator accidentally snoops on

28:59

their father having sex. And

29:02

this is a thing that

29:04

happens. And when it does, it

29:06

brings us back to those questions

29:08

of agency that we talked about on

29:10

the very first episode.

29:12

If you

29:12

are able to express

29:14

preferences about sexual behavior,

29:18

then you're an adult. and

29:20

we should really kind of stay out of your way.

29:22

That's obviously not true towards the end,

29:24

and it could easily be exploitation of

29:26

people with dementia. But

29:28

our traditional default

29:31

in nursing homes and for older

29:33

people was just no,

29:34

which is a very

29:35

kind of calvinist sex

29:38

negative

29:39

idea about

29:41

what it means to

29:42

care for somebody and

29:44

protect them. That's

29:45

Dr. Tia Powell again. You heard

29:47

her last week. People are entitled

29:49

to their secrets to keep certain

29:51

things to themselves for

29:53

whatever reason they choose. And when

29:56

people know they are being watched,

29:58

they change their behavior.

30:00

I learned about people rushing in

30:03

the bathroom, deciding

30:04

not to take long afternoon

30:06

naps anymore because too

30:08

much inactivity might be detected.

30:11

having to account for behavior that

30:13

deviates from their routine, being

30:16

found out that you own a pet, you're not supposed

30:18

to, being found out that you're dealing with

30:21

continence or that you like to take long

30:23

baths. Right? And just having to answer

30:25

to somebody and, you know, whether that

30:27

be a building

30:27

social worker, you know, frontline

30:30

staff or a family member about it. That's something

30:32

that most people don't expect

30:34

to have to do.

30:36

I

30:37

think it's

30:40

really not hard to imagine

30:42

the ways

30:42

living under constant surveillance could

30:44

impact somebody's well-being.

30:46

I mean, you can imagine this. Right? Imagine

30:48

if every single thing you did was

30:50

recorded and transmitted to

30:53

your parents. or your friends

30:55

or a doctor that is supposed to watch

30:57

you. Again, there are reasons why

30:59

cameras could be useful and could make

31:01

people safer. But we also have to

31:03

weigh the trade offs too.

31:05

Right? And there's

31:06

some things, including

31:08

with your technology that we can really look

31:10

at that would help person

31:11

stay home? Like, what about these cameras?

31:13

If you live

31:14

alone, can we set up a camera that

31:17

just takes photographs like

31:19

only films like the bottom twelve inches

31:21

of a room. So if you're lying on

31:23

the floor, we see you. If your feet are walking

31:25

around, that's all we see.

31:28

but you actually

31:29

need that. And I agree

31:31

that privacy is important, but privacy

31:33

that puts you faster in

31:35

the nursing home is

31:37

probably not what people are asking for. The

31:39

point here is

31:40

not that you should never ever use

31:43

cameras or sensors. plenty

31:45

of people have great experiences using these

31:47

devices to make their lives and their

31:49

loved ones' lives better. The

31:51

point is that their use needs to

31:53

be something that everybody understands and agrees

31:56

upon, which again is totally

31:58

possible. Tia suggests a

31:59

kind of technology genius bar

32:02

for older adults and their

32:04

families. And asking

32:05

every family again

32:07

and again, what's

32:08

what's hard for you? What do you need

32:10

help with? because we have like a genius

32:13

far. we have a sort of genius bar over here where you can say, well,

32:15

he's figured out how to undo the locks and goes out

32:17

of the house in the middle of the night. So, okay,

32:19

how can we figure that out? Give me give

32:21

me some solutions. what's affordable, what

32:24

doesn't make him feel like he's in prison, what's

32:26

not gonna be a

32:26

fire hazard, all that kind of stuff. But

32:28

you need, like, a genius

32:30

bar for everybody where they can go and do

32:32

some problem solving and figure out, we'd like

32:35

you'd like to stay home. We

32:37

can't go and live with them. What do you have

32:39

for us?

32:40

It is

32:41

tricky, and I have heard loads

32:43

and loads of positive stories about

32:46

that

32:46

type of

32:47

use of cameras and and

32:50

a friend of mine in Canada who

32:52

wasn't able to be an

32:54

in person support or care

32:56

partner for his one of his parents

32:58

or family members back in Asia,

33:01

Malaysia somewhere. He set

33:04

up a

33:04

camera and that was

33:07

incredibly six his fault.

33:08

That's Kate Swaffer

33:09

again. And Nikki says that for her

33:11

part, she really tried to respect her mom's

33:14

privacy and agency here. It's

33:17

about us. What

33:18

are we gonna do to make this work?

33:20

How are we going to

33:22

have this lifestyle? you know,

33:24

I wanna make sure that we're both feeling seen and

33:26

we're both feeling safe. I think

33:29

that's

33:29

what cameras are about.

33:31

Having the conversation

33:32

earlier rather than later

33:34

is a key part of this, talking

33:36

to someone about what they want,

33:38

what they don't want, and what would

33:40

work best maybe as a compromise. In

33:44

the series, we tried to explore some

33:46

of these concerns and

33:48

questions. from kids making decisions

33:50

for their parents to

33:52

the complicated conversations you might

33:54

have with a parent or a partner

33:56

about what they do or don't

33:58

want to know about

33:59

technology. This stuff is

34:02

complicated and it's hard to

34:04

navigate. I don't have all the answers here,

34:06

but I do think that we can begin to get

34:08

to a better possible future

34:11

by we can considering our assumptions about the capacity

34:13

of older adults, including those with

34:16

dementia. I'm really interested in

34:18

thinking

34:18

about technology change attitudes

34:21

to mention, I do think there's space there.

34:23

Right? Because that instead of focusing on the person

34:25

who's affected by all this, like, stigma

34:27

and layers of discrimination

34:29

and, you know, we're thinking about the people

34:31

who if they think about things

34:33

a little differently, we might get open up

34:35

some some more the more space

34:37

space. Instead

34:38

of jumping to invent a million devices to

34:41

solve one problem or

34:44

another, We could talk to people and ask them what

34:46

they want and need and then

34:49

think about why