The Comforting Fictions of Dementia Care
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The Backstory | The Backstory | Episode 12
The Comforting Fictions of Dementia Care
Larissa MacFarquhar discusses her reporting on the facilities that are using nostalgic environments as a means of soothing their residents.
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Released on 09/28/2018
Suppose there's a woman who believes
her husband is still alive even though he died 10 years ago.
If you're taking care of her,
whether you're a nurse or whether you're her daughter,
let's say, you have a dilemma.
Do you tell her he's dead
and possibly cause her to be bereaved all over again?
Knowing moreover, that she will likely ask you
the same question tomorrow or even in an hour from now
and become bereaved all over again,
or do you simply say, Oh he's not here.
He's at the office.
There are a number of nursing homes for people with dementia
in various countries of the world that are experimenting
with getting away from the traditional look
which is basically that of a hospital,
putting in place instead what looks like
a street or a neighborhood in a town.
And the idea is to give people who live there
a sense that they are somewhere normal,
that they are somewhere familiar.
They're not rotting in a hospital,
they're just in another village street.
The place I spent the most time was a place
called the Lantern which is in Chagrin Falls, Ohio
just east of Cleveland.
Their memory care unit is centered around
an open area in the middle, like a traditional
American town square.
The carpet is designed to look like grass.
There are clappered facades of houses that project
into the room with porches.
In a traditional nursing home,
the lights are on all the time, 24/7.
In Chagrin Falls, they at a certain point in the evening
turn the ceiling lights off and they turn
the porch lights on and the street lights on
and it looks like a town street at night.
There's been an enormous amount of thought put into
curating the life of a person with dementia
so that they can get as much out of it as they possibly can,
depending on what they're still able to enjoy
and able to do.
Eleanor Margolis was the person I spent most time with
when I was in Chagrin Falls.
She has problems with her memory
but she's very much still herself.
When I was there, she was just about to turn 100
and so she was thinking about this birthday
and what it meant to be still alive
when she was living in this facility where
the most fun she had was basically walking up
and down these paths and her meals.
She wasn't unhappy but she realized that her life
was pretty empty compared to what it had been before.
I mean this is one of the paradoxes of dementia,
that often people in advanced stage of the disease
are happier because they have lost a sense
of what is happening to them.
People at an earlier stage who are less affected like Ellie
are aware of what's going on.
It's hard to talk about the nature of dementia
because there's so many different kinds.
The most common and best known is Alzheimer's.
Some people very quickly lose their speech.
Other people have trouble remembering
and many, many people become confused
about how old they are.
Taking care of somebody with dementia
is very draining, very heart-breaking.
There's a consensus among people who are
living with people with dementia,
working with people with dementia,
that lying is certainly the easier thing to do
and often the kinder thing to do.
But, I just think there's a price to be paid
for lying all the time.
Most people elect to lie.
They think it's kinder.
I'm torn which is why I wanted to write this piece.
I think the question of deception in dementia care
is very complicated and I don't think
there's any one answer for every situation
about whether lying or telling the truth
is the better course.
I've ended up quite moved and persuaded by
the people who said, No, you tell the truth.
It's not just a matter of trying to keep
the person with dementia in the real world
for as long as possible.
One of the other things that matters is the person
who's doing the lying.
Even though almost all care workers in nursing homes do lie,
it changes them, it affects them.
They feel worn down by it.
(soft music)
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