0:08

Hello,

0:08

and welcome to flash forward.

0:10

This is the fifth and final

0:12

episode looking at all the stuff that inspired

0:14

the welcome to Vanguard Estates fictional

0:17

series. Today, we're gonna talk

0:19

a little bit about nursing homes and why

0:21

it is that while most people want

0:23

to spend their final years at home

0:25

or in a supportive community, that

0:27

doesn't tend to happen. And

0:29

then we're gonna do a little bit of wrap

0:32

up on this whole series and consider

0:34

what we have learned. Oh,

0:36

and by the way, I'm I'm your host. I say that

0:38

on every episode, so I should say it here now.

0:40

But before we go any further, I wanna share something

0:43

really which is that a listener has actually

0:45

created an interactive version of

0:47

welcome to Vanguard Estates with the audio

0:49

all in one place. So if you, like, wanted

0:51

to listen to the series but got frustrated

0:54

by trying to find the various episodes

0:56

or whatnot. I know it's like little confusing where you

0:58

have to scroll through your podcasting app, etcetera,

1:00

etcetera. Now, you

1:01

can play through the audio online.

1:04

I

1:04

am so thankful to Markos for setting that up will

1:06

put a link in the show notes and you can go

1:08

to flash forward pod dot com

1:10

slash vanguard interactive to

1:13

see and hear it. So again,

1:15

thank you, Marcos, for making that so cool.

1:18

I am like so stoked to have it now

1:20

on the site. Okay. Back to our

1:22

regular programming. So

1:24

let's start with the question that

1:27

is the name of this episode.

1:29

Where do you want

1:31

to grow old? Most

1:33

people share the same answer to that question.

1:36

Surveys show that seventy seven percent

1:38

of people over fifty say they want to remain

1:41

in their homes. And that number has

1:43

stayed consistent in polling for over

1:45

a decade. But not

1:47

all of those seventy seven percent of people

1:49

will get their wish. Three point four

1:51

million people over the age of sixty five

1:53

currently live in their children's homes,

1:55

and two point four million live in group

1:57

settings like nursing homes.

1:59

And

1:59

this happens for a bunch of different

2:02

reasons. For some people,

2:04

the homes they currently live in

2:06

would need to be changed. in some

2:08

way in order for it to be safe for them

2:10

to stay. In one survey, about a third

2:12

of all participants said that their homes

2:14

would need to be modified somehow if

2:16

they wanted to keep living in them. That

2:19

includes things like there's no bedroom

2:21

or bathroom on the first floor for them

2:23

to use. Most people

2:25

don't have the money to do that

2:27

kind of major renovation to

2:29

put a bedroom and bathroom on that

2:32

first floor. And that's

2:34

assuming that you own your house

2:36

and can do those kinds of renovations. One

2:39

think tank called the Urban Institute estimate

2:41

that by twenty forty, the number of

2:43

people renting their homes or apartments

2:45

will surge to twelve point nine

2:47

million. and in particular

2:50

those are likely to be black older

2:51

adults. What

2:53

that means is that a lot of people,

2:55

whether they like it or not,

2:57

will wind up in some kind of facility,

3:00

likely a nursing home.

3:02

And there is a reason that most of

3:04

us don't want to end

3:06

our lives in one of these places.

3:10

We know nursing homes are unpleasant

3:12

places to live. it's a punch

3:15

line in the Simpsons that Grandpa

3:17

Simpsons Nursing Home is like a sad, horrible

3:19

place to be. That's Sarah

3:21

Luederman, a reporter at the nineteenth

3:23

who's covered nursing home conditions. There's

3:26

just like this thing that we know about

3:28

them and yet we send our the percent of people

3:30

we love to them anyway.

3:32

The

3:32

quality of nursing homes varies

3:34

wildly, but they're marked by

3:37

some specific elements. And

3:39

one of them is that you can't

3:41

really leave just because

3:43

you want to. Here's Dr. Alana

3:45

Lee Glaser, the Anthropologie professor

3:47

at St. John's University. who you heard last

3:49

week. The

3:50

facilities where I worked, you know,

3:52

you couldn't get off the floor. So

3:54

you need to pass, put a passcode in

3:56

to access the elevator or the stairwells.

3:59

And that's just such

3:59

a high level of containment. It always made me

4:02

feel really uncomfortable and

4:04

envisioning a future where I live in a setting

4:06

like that, you know, and knowing that I am

4:08

unable to leave.

4:10

Many nursing homes have dedicated dementia

4:12

awards. also sometimes called memory

4:15

care units, where they have extra

4:17

security in place. And in sociology

4:19

jargon, these places are considered

4:22

total institutions. The

4:24

total institution is a

4:26

a concept that was proposed by the sociologist,

4:29

Irving Goffman, And

4:31

basically, it's the the

4:33

basic definition is this place where

4:34

a lot of people are

4:37

living in the same place and they work in the

4:39

same place and they live in the same place. And there

4:41

isn't really the separation between

4:43

sort of, like,

4:45

home

4:45

and work

4:47

and that we see

4:49

in most places, they're in the same sort of

4:51

separation spheres. And

4:53

then in the total

4:55

institution,

4:56

people don't have privacy.

4:59

They

4:59

don't have

5:00

freedom of choice. They

5:03

don't choose what

5:04

they're going to do, what they're going

5:06

to eat. Prisons

5:08

are also total institutions.

5:11

These

5:11

are places where when you live there, you

5:14

no longer have the ability to decide

5:16

for yourself what your day

5:18

looks like or what you want to

5:20

do. A disability activist,

5:22

Dave Hingsburger, came up with what he

5:24

calls the burrito test. That

5:26

test goes like this. You wake

5:28

up in the middle of the night and you are craving

5:30

a microwave burrito. Can

5:32

you get up and microwave one

5:34

yourself? If the answer is no,

5:36

you are not allowed to do that. It's

5:39

a total institution. There's

5:40

also like a concurrent concept called

5:43

the right to eat too many doughnuts. which

5:45

is like, you know, people

5:47

have a right to make bad decisions. Like,

5:49

if if I as

5:50

someone who's not living in an institution or

5:53

in a group home or you

5:55

know, with a certain level of

5:56

care, like, if I decide to eat a

5:58

bunch of if I decide to skip work, eat a bunch

6:00

of donuts and take an nap, like, nobody's

6:02

gonna stop me. I might, you know,

6:04

lose my job or or face, you

6:06

know, get have a stomachache,

6:07

like, you know, regular consequences. But

6:09

like, no one's

6:10

gonna stop me.

6:12

In

6:12

most nursing homes, that

6:14

wouldn't be allowed. A nurse would stop

6:17

you. And it doesn't have to just do

6:19

with food. This is about your choices

6:21

generally. You or

6:23

I might be feeling like a little

6:26

blip one day and decide to just spend

6:28

the day in bed. That

6:30

is not a choice that folks who live

6:32

in these places have. There's

6:34

a really excellent older study

6:37

and there's like this one

6:39

passage that he writes about where

6:42

someone wanted to stay in bed

6:44

all day. They didn't wanna have to get out of bed, but

6:46

long term living facilities protocols insisted

6:50

that every patient get out of bed and

6:52

move to a common room or whatever at certain

6:54

point in the day. And he kind of writes

6:57

like along the lines of, you know, this person's human

6:59

rights weren't being trampled

7:01

by, you know, not

7:03

by their wishes to stay in bed, not being respected.

7:06

And it always stuck with me that, you know, in

7:08

fact, like, aren't they? You know, if if what you

7:10

wanna do all day is play around.

7:14

It seems so unfair that

7:16

because of various bureaucratic

7:19

liabilities or bureaucratic values

7:22

that you're not permitted to just

7:24

make that decision for yourself in

7:26

these in certain settings, these

7:28

congregate care care settings.

7:30

Secure dementia units a

7:34

severe form of violation

7:38

of rights of institutionalization and

7:41

worse of segregation.

7:44

That's

7:44

Kate Swaffer again. Not only

7:46

are folks with dementia segregated away,

7:48

conditions in many nursing homes

7:51

are often very bad. We

7:54

talked last week about the shortage of caregivers

7:56

and people willing to do these jobs

7:58

for such low pay. And

8:00

that is having a huge impact on

8:02

the quality of care in these

8:04

facilities.

8:06

We're talking like like one person

8:09

being responsible

8:10

for toiloting,

8:11

feeding, changing, cleaning,

8:15

giving medication to like

8:17

seventy people.

8:18

That's like not something that

8:19

someone could do competently and also

8:21

provide emotional support for those

8:23

people. Like, it's not it's not

8:25

like a thing

8:26

a human being can do.

8:28

And

8:28

so, like, when we have these,

8:30

like, this understaffing, when we have

8:33

these underpaid, undertrained,

8:35

overworked staff

8:38

doing all of this stuff, like,

8:40

it gets really ugly, really quickly.

8:44

During the COVID pandemic, nursing

8:46

homes were hit really,

8:48

really hard. Here is a statistic that

8:50

I always find just shocking.

8:52

According

8:53

to the COVID Tracking Project,

8:56

deaths connected to long term care

8:58

facilities account for thirty

9:00

five percent of US

9:02

COVID nineteen fatalities, even though

9:04

less than one percent of

9:06

the US population lives in

9:08

these places. And this

9:11

continues to be an issue. In October of

9:13

this year, AARP data showed

9:15

that thirty two percent of nursing home

9:17

residents tested positive. for

9:19

COVID-nineteen that month. And

9:21

it's not that COVID has

9:23

suddenly made nursing homes unpleasant.

9:26

For decades, folks living in these

9:28

places have been routinely strapped

9:30

down or drugged. In

9:32

fact, in Australia, there is

9:34

data to say that probably six hundred people

9:36

a year are dying from

9:38

the overuse of antipsychotics in

9:41

Australia, and there's been a

9:43

number of research projects about reducing

9:46

antipsychotics in nursing

9:48

homes globally and yet

9:50

they persistently prescribed

9:52

to to paper with dementia.

9:54

Part of thinking about care is

9:57

our medication interventions in that

9:59

case in

9:59

particular have been disastrous.

10:02

That's

10:02

Dr. Tia Powell again, the psychiatrist

10:04

and bioethicist at Albert

10:06

Einstein College of Medicine.

10:08

We've been using antipsychotic

10:09

medications to

10:12

treat agitation in nursing

10:14

homes. And they're terrible. They cause

10:16

delirium. They have terrible side effects. They

10:18

cause sedation, so you fall, you break a hip,

10:20

and then you're bed bound and game

10:22

over. They cause delirium. They

10:24

do all kinds of

10:24

things. They make a lot of other illnesses worse.

10:26

There have been

10:28

some attempts to make it harder to prescribe

10:30

these things in nursing homes,

10:32

but there is a long way to go.

10:35

There's almost no regulation at all

10:37

for the use of antipsychotic medications,

10:40

insisted living programs, and

10:42

in other places. And even in the acute

10:45

care hospital and our big fancy

10:47

medical research institutions,

10:48

we still use this stuff in its bad

10:50

news. And

10:51

people are finding workarounds.

10:53

Like, oh, yes, schizophrenia. That's why

10:55

we're actually it

10:58

would be reportable in New

10:59

England Journal if you found a ninety year

11:01

old who was first diagnosed with schizophrenia.

11:04

That's kinda not like how

11:05

that works. It would be,

11:07

whoa. That just doesn't happen.

11:09

In

11:10

other places, they've stopped using

11:13

antipsychotics and started using

11:15

other drugs.

11:16

Professor Henry Brodarty, who's one

11:18

of the leaders in dementia in Australia,

11:20

in his witness

11:22

statement to the Royal Commission said that Now

11:25

some doctors are switching from

11:27

antipsychotics as ways

11:30

to sedaterestrained. and

11:33

are starting to use high dose

11:35

and histamines, which also have a

11:37

highly sedative effect.

11:40

Given

11:40

all of this, it won't

11:42

surprise you then that the outcomes

11:44

for living in these places

11:46

are

11:46

not good. People

11:48

who move into nursing homes tend to die

11:50

sooner than those who get to age in place.

11:52

Over thirty percent of residents

11:54

who enter a nursing home facility die

11:57

within the first year. Now,

11:59

when you think about it, this

12:01

is kind of weird.

12:03

Most people don't want to

12:05

live in these places. The conditions

12:07

are bad. They are cesspools for

12:09

disease, they are poorly regulated, and

12:11

as we talked about last week, They're really

12:13

expensive. So

12:15

why do they exist? Why

12:17

do we allow this to happen?

12:19

It

12:20

turns out actually there's a lot of suffering

12:22

that people

12:23

in our society are completely comfortable with

12:25

living with. I

12:26

am officially on the record as being

12:29

opposed to nursing homes

12:30

sort of on principle. I do

12:31

not think that they should exist.

12:33

Sarah agrees. We actually wrote very

12:35

similar stories right around the same time

12:37

in twenty twenty. both arguing for

12:39

the end of nursing homes. And

12:41

one of the things that you hear when

12:43

you talk about this or write about this.

12:45

is

12:46

that there is simply no other

12:48

way for us to handle

12:50

the aging population. There's just like no

12:52

other solution. What else are we

12:54

supposed to do? Nursing homes have been around

12:56

forever for a reason. The

12:58

thing

12:58

is, they have not been around

13:01

forever. It's

13:02

actually really new. That was the thing that

13:04

shocked me when I was doing research for this

13:06

piece. Before

13:07

nursing homes, there were things like rest

13:10

homes, which were small facilities that housed

13:12

thirty to fifty people at a time.

13:14

Those were generally run by philanthropists,

13:17

and they were for folks who had really nobody

13:19

else to turn to. Historically,

13:21

people have

13:23

done care at home. It's

13:25

mostly been family care.

13:28

Those who didn't have that would go to alms

13:30

houses or poor houses, which

13:32

were generally awful.

13:34

people were often forced to work

13:37

for scraps on

13:38

Blackwell's Island, which is now called Rosebel

13:41

Island in New York City, there were hundreds of beds

13:43

that were squeezed together so tightly that

13:45

residents had difficulty getting in and out

13:47

of them.

13:48

During the Great Depression,

13:49

the number of poor people famously skyrocketed,

13:52

and these places could no longer

13:54

keep up. And for a

13:56

long time, the US government

13:58

was not sure what to

13:59

do. It

14:00

wasn't until the nineteen fifties

14:03

that the large institutional spaces

14:05

we know of today became common,

14:07

thanks to a new law in the US called

14:09

the Hill Burton Act, which allowed

14:11

public money to be used to build

14:13

nursing homes. Between

14:15

nineteen sixty and nineteen sixty five, federal

14:17

spending on nursing homes, went up from

14:19

forty seven million to four hundred and

14:21

forty forty nine million a year. So

14:23

it's like

14:26

Sorry. If this is a podcast, you can't see my

14:28

arm going up with the the hand

14:30

motioned up. And

14:33

then

14:33

Medicaid, came to be, which is like the

14:36

biggest wonder of long

14:38

term

14:38

care in the ICs in nineteen sixty five.

14:40

and

14:41

that put even more money in the nursing home

14:43

system. So the nursing home capacity in

14:45

the US basically more

14:48

than doubled in the

14:50

decade between nineteen I get between nineteen sixty

14:52

three and nineteen seventy three. So

14:54

there

14:54

was all of this money going into

14:56

these new institutions, but

14:58

very little oversight. There

15:00

weren't a

15:01

ton of requirements about

15:03

things like building

15:05

codes, whether a

15:07

nurse was available, you

15:09

know, whether narcotics were unlocked cabinets,

15:13

whether

15:13

the food was

15:15

food.

15:19

Yeah. Like, just really there's

15:22

just one account that I read that, like, talked

15:24

about, like, green meat with maggots in the kitchen.

15:26

It was just, like, really gross stuff.

15:28

Eventually, the US passed some basic

15:31

rules about what constituted a

15:33

skilled nursing facility to

15:34

address these glaring errors.

15:37

But

15:37

there are still big problems with

15:39

oversight. and a lot of the current oversight

15:41

relies on nursing homes to

15:43

accurately self report their

15:45

conditions.

15:47

Today, the nursing home industry in the

15:49

US is huge.

15:51

According to the CDC, there were fifteen

15:53

thousand six hundred facilities in

15:55

twenty sixteen. and almost seventy

15:57

percent of them were for profit.

15:59

A report by Grand View Research

16:01

found that the long term care market is

16:03

set to be worth one point seven

16:06

trillion dollars by two thousand and

16:08

thirty. In the United States,

16:10

nursing home lobbyists are powerful and

16:12

have already gotten to work seeking

16:14

immunity from COVID-nineteen related

16:16

lawsuits and asking for billions

16:18

in federal relief funding and

16:20

resisting additional oversights

16:22

and regulations. that might be imposed upon

16:24

them. Now, the point that

16:26

Sarah and I are making here, the argument

16:28

that nursing homes are fairly

16:30

recent and should probably not exist.

16:33

It

16:33

is not an argument to go back to

16:35

free domestic labor.

16:37

I think a lot

16:38

of people misunderstood my argument and think that what

16:40

I'm arguing is that Like, it

16:42

was totally better when unpaid

16:45

family caregivers, mostly almost

16:47

entirely women basically didn't

16:49

have lives and spent all their time

16:51

caring for people. Like,

16:53

that's no. That's that's that's

16:55

bad, obviously. But

16:57

it's not like those are her only two

16:59

options. Right? Either women have to give up

17:01

their jobs and do all this care work for

17:03

or we have these terribly run and

17:05

poorly regulated nursing homes where people

17:07

suffer and die. We actually do

17:09

have other choices. when

17:12

we come back, we're gonna talk about what those

17:15

choices

17:16

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18:20

Okay. So I have said already, multiple

18:23

times now, that I think nursing homes as an

18:25

institution, as a place, are something that

18:27

we should consider a band name. But even

18:29

within the construct of nursing homes, there

18:32

are much better models than the

18:34

standard institution. And

18:36

one

18:36

of these examples can be found in

18:38

the Netherlands. So you must

18:40

realize that the vision on

18:43

normal live for dementia, already a

18:45

thirty year old innovation. This

18:47

is Jeannette

18:48

Speerring, one of the founders of a community

18:50

in the Netherlands called

18:52

the whole bag. Yes.

18:55

And it's very

18:57

difficult from people from

18:59

abroad to pronounce the

19:01

h. which is very prominent in

19:03

the Dutch language, but that's also

19:05

why we were dubbed dementia

19:07

village because people can't pronounce

19:09

the whole leg. I'm gonna try

19:11

my very best to say this correctly on

19:13

the episode. Now, a dimension village

19:15

is a different model for where

19:18

people might live when they have

19:20

dementia. Jeanette actually used to

19:22

work at a more traditional nursing

19:24

home back in the 1990s. But

19:26

she was looking around and hearing from patients and families

19:29

that things weren't that

19:31

good. People weren't

19:32

really dissatisfied about

19:37

topics like food

19:39

or how they were being

19:40

treated by stuff.

19:43

the the lack of

19:45

respect or

19:46

dignity.

19:49

In nineteen ninety

19:49

three, they decided to try

19:51

and retrofit a nursing home to be more like a

19:53

set of apartments. And I

19:55

always

19:56

compare it with

19:58

and I don't want to offend

19:59

someone, but I've

20:02

compared it with an East German

20:04

concrete block to

20:05

give you any idea of

20:07

how awful it was on the outside. But on

20:09

the inside, it's

20:10

once we transformed it,

20:13

we transformed big words into

20:15

living rooms. We put

20:18

kitchens in it. We

20:20

put a washing machine

20:22

and a drawer

20:24

onto every word while we created

20:27

hosts. And

20:28

Jeanette says they immediately

20:30

saw results. People were happier

20:33

and healthier And from there, Jeanette and the team decided to

20:35

try and really go all in

20:37

on this idea. So in

20:38

two thousand

20:39

eight, they built the Hulkvek.

20:41

Well, you must imagine it's in it's

20:44

in a a normal

20:46

Dutch neighborhood. It's a little

20:48

bit because we are in a rather

20:50

urban environment, not a big city, but a

20:52

little bit urban. And

20:55

there are twenty

20:56

seven houses in

20:58

the neighborhood and

21:01

in

21:01

every house, seven

21:04

people form

21:04

a household. They

21:07

live together. If you

21:09

talk about a household, that means that

21:11

every meal

21:11

is cooked in that household, so

21:14

breakfast, lunch,

21:14

and dinner. So

21:17

every evening, twenty seven different menus

21:19

are on. These

21:21

houses look

21:22

just like regular Dutch

21:24

houses in a regular Dutch

21:27

neighborhood. Each home

21:28

has seven bedrooms, a kitchen,

21:30

a living room, all normal

21:32

stuff. And it's all accessible

21:34

to everybody all the time.

21:36

Residence can use that kitchen, they

21:39

can open the fridge, they can

21:41

take something out, they if they

21:43

are still able, they can make their own

21:45

sandwich, so nothing is locked.

21:48

AND

21:48

DIFFERENT HOMES IN THE NEIGHBORHOOD ARE ACTUATED

21:51

DIFFERENTLY PENDING ON WHO LIVES

21:52

THERE. REMEMBER THERE ARE SEVEN PEOPLE PER HOUSE AND

21:55

I ASKED Like, how do you decide

21:58

who lives together? Good

21:59

question because we'll live in together with

22:02

someone isn't that easy always. And

22:04

how do you do that

22:06

with complete strangers as well?

22:09

The answer

22:10

lies in something they call

22:12

lifestyles. Nowadays,

22:13

we have four lifestyles in

22:15

the whole bag. And

22:17

if

22:17

you live in a certain lifestyle, that

22:20

means that everything

22:22

that is in that household,

22:24

the interior, but also

22:26

the meals, the music,

22:28

the newspaper, which is on

22:30

the table, everything is

22:33

according to

22:34

that lifestyle. So these

22:37

four large cells, the urban,

22:39

the formal, the

22:40

cosmopolitan and the

22:42

traditional large cells, They

22:46

help people

22:48

feel better

22:48

in their own houses which they

22:51

share with six

22:52

others. So in the urban

22:53

and traditional lifestyle homes,

22:55

people are more likely to want

22:57

to drink beer or Geneva, a

22:59

traditional Dutch drink. and so that

23:01

stays stocked in the kitchen. In the cosmopolitan

23:03

and formal lifestyle homes,

23:05

they tend to like to have wine with

23:07

their meals. Also,

23:09

the interiors, you see

23:10

the cosmopolitan lifestyle is

23:12

much more outspoken in

23:14

colors, for example. where the

23:16

traditional lifestyle interior colors are

23:19

much more mute and

23:22

beige, not that outspoken.

23:25

And if you look at the interior of formal

23:28

lifestyle, you see the ten liters,

23:30

but, well, the

23:31

ten liters which fit a

23:33

formal lifestyle. But in

23:35

the urban lifestyle, they also have

23:37

ten years, but they look completely

23:40

different. And

23:42

we have

23:42

wallpaper with big flowers on it, for

23:45

example, whereas in

23:47

the formal lifestyle, we have fairy

23:50

blessed wallpaper.

23:52

Residents

23:52

also have access to the whole

23:55

neighborhood. If you

23:55

step out your front door, you

23:58

will be on

23:59

well, you will be

24:02

outdoors, which sounds normal.

24:04

But for people living

24:05

with dementia

24:07

who are secondly, most

24:07

of the time, a

24:09

locked in facility and

24:11

can't go outside by themselves.

24:13

This is for us, it's normal,

24:15

but it's a rare feature that if you step

24:17

at your

24:18

front door, unaccompanied by

24:20

a nurse or a camera,

24:21

because freedom is one of

24:23

the other assets of the village. If

24:25

you

24:26

step out your fungal, you can

24:29

wonder on the street and through

24:31

the parks, you can

24:33

cross the big square or you can go

24:35

to the theater square. Or

24:38

you can visit the supermarket.

24:40

There is a restaurant where

24:43

you can go

24:43

to there is a

24:46

theater where performances

24:48

are held. In

24:50

total, the

24:51

HOKWOG houses one hundred and eighty

24:54

eight residents. And behind the scenes,

24:56

there is a whole team of people

24:58

helping to make this possible. Each

25:00

home has

25:00

a lead caregiver and

25:03

a supporter. Then there are the

25:05

employees. There are employees of the grocery

25:07

store, the restaurant, doctors,

25:09

occupational therapists, the

25:11

whole shebang. So

25:12

it's it's a whole

25:14

it's a whole organization

25:17

where everyone is on our payroll except

25:19

the hairdresser. But she works

25:21

already definitely

25:21

in Ohio. So she's one

25:23

of us. The hove bag

25:25

is specifically for people

25:28

with late stage dementia. And so residents

25:30

don't tend to stay all

25:32

that long. The average time someone lives

25:34

in the village is about two to two

25:36

and a half years. But

25:38

while they do live

25:38

there, Jeanette says that their lives

25:41

are much better often than

25:43

they were even before they

25:45

arrived. and certainly better than they would

25:47

be in a traditional nursing

25:50

home. I think

25:50

the biggest measure for

25:52

successes with other people, other

25:55

care providers say when

25:56

they come and visit us. And

25:58

that is that they do not

25:59

believe that the people who live in the house of

26:02

ag are

26:02

the same residence, the

26:05

same people with a diagnosed with

26:07

severe dementia, that

26:09

these people are the

26:11

same

26:12

residents

26:14

as

26:14

they have in their facilities,

26:17

their traditional care

26:19

facilities where people are

26:21

drugs, where people are

26:23

confined to a certain place

26:25

in the institute where people

26:27

can't go out their own

26:29

houses and have freedom to walk

26:32

around and to to engage and to

26:34

socialize. So

26:36

sometimes we have to convince

26:38

these

26:38

persons that those people living

26:41

in the hallway are really the

26:43

same restaurants, really

26:46

in that severe

26:47

or that last stage of dementia,

26:49

but that's creating different

26:52

environments, having a different philosophy,

26:55

offering choice and offering freedom

26:58

makes such

26:59

a huge, huge

27:02

difference.

27:02

Now, I

27:04

know

27:04

what some of you are thinking, especially if

27:06

you're Americans. You're probably thinking, well,

27:09

Rose, this sounds great. It

27:11

also sounds really freaking expensive.

27:14

Well,

27:14

I poor

27:15

poor American listeners

27:17

local buckle up. If you are

27:18

diagnosed with dementia by a

27:21

special

27:21

committee, which functions

27:23

all over the Netherlands,

27:24

and you you get that

27:27

permission to

27:27

move into a nursing home, the state,

27:29

the government will pay everything.

27:32

So actually, everyone in the Netherlands

27:35

can afford

27:37

this

27:37

type of care. Okay.

27:39

Those of us in the United States can just take

27:41

like a short moment to weep at

27:43

how nice that sounds. But there

27:45

is also another metric for how expensive this

27:47

model might be, which is how much the hock

27:50

bag gets from the government to

27:52

operate. The budget that

27:53

we get from the government, that hock

27:55

bag gets from the government is the same budget as every

27:58

other nursing home in the

27:59

Netherlands. So we

28:01

do not get extra budget because we

28:03

have created this nursing home.

28:05

Now, this is still a

28:07

nursing home. It still segregates folks

28:09

with dementia away in their own

28:12

little area. I

28:13

mean, it's definitely better,

28:16

but

28:16

also the

28:18

bars in hell, you know? Like,

28:20

being nicer than a nursing home is a better traditional nursing home

28:22

is like, you know, it's a very

28:24

low standard to meet. So I I was

28:27

like, Like, they have, like, a restaurant

28:29

that people go to, that, like, people from

28:31

the community go to. But

28:33

that's not really it's not

28:35

kind of the integration if people can,

28:37

like, visit. People can visit nursing

28:39

homes too. You know? Like, it's it's

28:40

it's

28:42

the people that living in the village

28:45

are still separated from

28:47

society. This is something

28:49

that

28:49

Kate mentioned earlier and something

28:51

that she thinks is wrong. Kate

28:53

thinks that we should have integrated living facilities for people

28:56

with all kinds of disabilities

28:58

and needs. Why

28:59

haven't

29:00

we found ways to

29:03

allow people with dementia who

29:05

are neurodiverse and

29:07

who may have different

29:08

needs. and need cognitive ramps.

29:10

They may not need wheelchair ramps,

29:12

but

29:12

we need cognitive ramps.

29:14

Why aren't we providing

29:17

communities that enable people

29:20

to live more independently

29:22

for longer. And I

29:24

I understand completely from my own

29:27

professional background that there's

29:29

likely gonna be time when I will

29:31

need to be in some

29:32

sort of assisted living. That would

29:34

be especially so if

29:36

I lived on my own. But I, you know, I think

29:39

that we need much, much

29:41

smaller group housing models

29:43

that aren't exclusively for

29:45

people with dementia.

29:46

And I

29:47

asked Jeanette about this, and

29:49

her answer kind of surprised

29:52

me.

29:52

They are completely right

29:54

We are also convinced

29:57

that people should stay part

29:58

of society.

29:59

Even when they are

30:02

diagnosed with dementia, even when the when

30:04

the dementia progresses. But

30:06

certainly enough, society

30:08

isn't ready yet for people living with

30:10

severe dementia because they do not understand

30:13

them.

30:13

They fear people living with dementia.

30:16

So it is not

30:18

that institutions should change

30:20

the foremost by by desegregation.

30:23

It is society

30:25

which

30:25

has to step up.

30:28

to

30:28

embrace people living with dementia

30:30

or whoever is living with a disability,

30:32

by the way, so

30:35

that they can and

30:36

able people to stay part of

30:39

society so that we, as institutions,

30:41

don't have to segregate

30:43

them. So our answer

30:44

kind of brings up a really interesting question.

30:46

It's like a little bit of a chicken and egg

30:49

quandary. Whose responsibility is it

30:51

to change the way that we think

30:53

about? aging. Right now, we have sort of

30:55

a self reinforcing system. We segregate

30:57

folks with dementia because culturally

31:00

people are anxious about having them

31:02

integrated into society. And then by

31:03

segregating them, we reinforce that

31:06

stigma. But how can you push

31:08

back against that if you don't integrate

31:10

folks back into the world? And as

31:12

care providers, is it ethical to

31:14

force people to live in situations where maybe

31:16

they are unwelcome or treated

31:18

poorly? I understand,

31:19

like, there's a

31:20

lot of issues when you're dealing

31:23

with, you know, people with dementia, behavioral

31:26

issues, safety issues.

31:28

Like, you know, people might not behave appropriately.

31:30

They might shout. They

31:32

might curse. They might take all

31:34

their clothes off. Like, those are all things people do.

31:38

But I I think

31:40

that really, like, instead of building a special separate

31:43

place for those people. What we really

31:46

need to do as a society is

31:48

get comfortable. It's that.

31:49

Like, just get comfortable with

31:52

having people with disabilities and

31:54

like dementia because it's a disability around

31:56

to not look away, to

31:59

not isolate people

32:01

and their caregivers when they behave in

32:03

ways that are odd

32:06

or disruptive. You and

32:07

I probably can't make

32:09

a huge difference in the way that

32:11

the nursing home industry is

32:13

run. but we can actually impact

32:17

this. We can think about

32:17

our assumptions and demands

32:20

and the way we react when

32:22

someone behaves in a way that we

32:24

might not expect.

32:26

I wanna

32:26

live in a society where

32:28

people

32:29

with disabilities and seniors

32:31

and kids too, like families

32:33

all exist in public and it's

32:36

normal. like, if you're somewhere and a baby starts

32:38

crying, nobody is like,

32:40

well, you need to go home. You know?

32:42

Like, we're it's like we're

32:44

you

32:44

know,

32:45

caregivers can can go

32:48

out and have lives and

32:50

still do what they need to do,

32:52

where you know, if someone's talking to themselves in public,

32:54

it's not a big deal.

32:56

If someone, you know, if

32:58

if someone with dementia or an intellectual disability,

33:02

is is being disruptive, like people

33:04

just kind of take it in stride.

33:06

Now, we have

33:07

talked a lot about nursing homes.

33:10

the bad ones and the better ones. But there is

33:12

in fact another way

33:14

for care to happen. Another

33:16

place in fact And that is

33:18

in people's homes. The

33:21

thing about ending nursing homes is

33:23

we already have a

33:25

home care system in the United States at

33:28

least. Like,

33:30

we have long term services and

33:32

supports for people at home that are

33:34

funded by the government and

33:36

that involve paid workers going to

33:38

people's homes and caring for

33:40

them. The problem with it

33:42

is that it is incredibly

33:45

underfunded. States are

33:45

not required to pay for at home

33:47

care for anybody. If a

33:49

state isn't

33:50

required to pay for something, they're

33:52

generally not going to. So

33:54

you end up with these huge waiting lists to

33:56

get services and supports at

33:59

home. In some

33:59

cases, at home care can actually be

34:02

far more affordable. And again,

34:04

this is what most people

34:06

want. I just wrote about

34:07

the

34:08

of Georgia has seven thousand people,

34:10

over seven thousand people when they're waiting

34:14

And

34:14

it what it comes down to is

34:16

just that, like, there isn't

34:17

the political will to pay for

34:20

it. It

34:20

is completely possible

34:23

to

34:23

deliver care at

34:24

home for people. We just need

34:27

to put the money in. Of course,

34:29

the US is economic inequities

34:31

and terrible healthcare system have made dying at

34:33

home well challenging too. The New

34:35

Yorker just published an investigative

34:38

report about the ways in which the at home

34:40

hospice industry has become a

34:42

twenty two billion dollar

34:44

industry, rife with exploitation. But

34:48

done well with care

34:50

and dignity in mind rather than

34:52

dollar bills,

34:53

at

34:54

home care is almost always better

34:56

than moving someone into a total

35:00

institution. This is a situation in

35:02

which it's very clear that what we are currently

35:04

doing could be much

35:06

better. In the short run, we could have

35:08

nursing

35:08

homes that are designed and run like

35:12

these dementia villages that make people happier and healthier.

35:14

In the longer run,

35:16

we could reframe our ideas

35:18

of care and the way

35:20

we spend money to provide people

35:22

with the kinds of experiences they

35:25

actually want. And yet, we don't make

35:27

those

35:27

changes. We don't do those

35:30

things. The HOKFEG has been around

35:31

for over ten

35:33

years, and it still treated like some kind of

35:36

wild experiment, some

35:38

newfangled

35:40

thing. What people want is possible and

35:42

doable if funding priorities

35:46

change? So why are

35:48

we stuck with the

35:50

worst possible options?

35:52

The answer is both

35:54

complicated and also kind

35:57

of not. It comes down

35:58

to two main things, capitalism

36:00

and ableism.

36:02

Right now, there are lots of people

36:05

making lots of money off of the way the

36:07

system currently operates. Our economic

36:09

system prioritizes profit

36:12

overall else. And

36:14

because older folks in general don't

36:16

have a ton of political

36:18

power or organizing capacity,

36:20

it's hard to push back on that.

36:22

On top of that, you have a culture that is extremely willing to

36:25

ignore, ostracize, and discriminate

36:27

against disabled folks. Estates

36:30

see this currently with the pandemic, right? So many

36:32

people seem not only willing to

36:35

accept, but gleeful at

36:37

the prospect that the virus might eliminate

36:40

disabled folks at a higher

36:42

rate. And a lot of people

36:44

don't think of older folks

36:46

as disabled. Even older

36:48

adults themselves often resist

36:50

this label. But it's worth

36:52

considering them in the

36:54

same breath. And there's this

36:54

older disability where it's activist who he's

36:57

an older adult now,

37:00

and his name's

37:02

Kelly Buckland. and

37:03

he had this quote

37:05

that I think about all the time,

37:07

which is that nobody lives in a

37:09

nursing home because they're old. they

37:11

they go to the nursing home because they have

37:13

a disability. Like, you end up in the nursing

37:15

home because you need a certain level of care.

37:17

It's not like you turn eighty and, like, automatically

37:19

they admit you. And one

37:21

exciting thing that we're seeing some real alliances between aging

37:24

activists, disability activists,

37:27

and care workers.

37:29

I think if you look

37:30

at the way that organizations

37:32

like the American Association of

37:34

People Disabilities, how how they've

37:36

sort of started to, like, work with

37:39

SCIU and the labor movement. I

37:41

think that is in

37:42

no small part because a lot of

37:44

these bigger disability rights organizations are now

37:46

led by women. who understand that,

37:49

you know, care work is work.

37:51

And I think that's really that's that's

37:53

been a really interesting development in

37:55

the past decade and one I've been really excited to cover as

37:57

a journalist. This

37:59

series has been about a lot

38:02

of things. family

38:02

care, aging, dementia, technology, culture,

38:05

money. And I was thinking

38:06

a little

38:07

bit about why I was

38:09

drawn to this topic

38:12

initially. I have not ever cared for

38:13

anybody personally with dementia and it's

38:16

something that frankly I don't think

38:18

about in my day to

38:20

day life all that

38:22

often. But I think

38:22

that at the same time, it hits on

38:25

so many of the topics that we

38:27

talk about on FlashForward all the time. things

38:29

like surveillance and ethics and policy

38:31

and neuroscience. And it does so

38:34

while looking at a population

38:36

that is largely

38:38

left out of futurism. When you

38:40

see images of the

38:42

future, you rarely see

38:44

older folks.

38:46

You almost never see people using wheelchairs or canes.

38:48

You don't even see a lot of wrinkles

38:50

amidst all the shiny chrome

38:52

and sleek new devices. Aaging

38:55

is left out of futurism unless it is

38:57

being conquered. But of course, we

38:59

will continue to get older

39:01

in the future. is

39:03

how time and biology works.

39:06

Simply ignoring an entire group

39:08

of people because they are inconvenient to

39:12

the storyline, is not

39:14

only unrealistic. It's also

39:18

problematic. Not everybody gets to

39:20

grow old, unfortunately. But we should all

39:22

think about what we want for our

39:24

lives and for our friends and

39:26

family if we get

39:28

that lucky. And I hope that welcome to Vanguard Estates

39:30

and this little series of explainer

39:32

episodes helped you think

39:34

through some of those choices

39:36

and ideas so

39:38

you can work towards a better future.

39:47

FlashForward is

39:52

hosted

39:52

by He Rose Evelyn and produced by

39:54

Aussie lina Schibman. The intro music

39:56

is by Asura and the outro music is

39:59

by Hasselonia. The

39:59

episode art is by Maddie

40:02

Luchansky. This is

40:02

the last episode and are welcome

40:05

to Vanguard State's series. Next,

40:07

we are taking a little break. And

40:09

then in December, flash forward is going

40:11

to release its final three

40:13

episodes ever. That's right.

40:15

The show is ending for good at the end of

40:17

this year. If you're a patron you have heard

40:20

all about these plans, I have in fact

40:22

mentioned them in the credits

40:24

of other episodes. The show's Patreon will close-up shop on

40:26

December thirty first. But if you

40:27

want to keep supporting me, Rose, as I go

40:30

off

40:30

and do my

40:32

next things, you can find out more about how to do that at flash forward

40:34

pod dot com. There is a blog

40:36

post up now with all of

40:40

that information. I hope you enjoyed this series and I really

40:42

hope you enjoy our finale. See

40:44

you in a

40:46

couple weeks.