DR. ALLEN POWER: Reimagining Dementia Care with Compassion and Community

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Don Priess (00:00):
When the world has got you down, Alzheimer's sucks.
It's an equal opportunitydisease that chips away at
everything we hold dear and todate, there's no cure. So until
there is, we continue to fightwith the most powerful tool in
our arsenal, love. This is loveconquers all, a real and really

(00:22):
positive podcast that takes adeep dive into everything,
Alzheimer's, The Good, The Badand everything in between. And
now here are your hosts, Susiesinger Carter and me. Don
hi everybody. I'm Susie singerCarter,
and I'm Don Priess, and this islove conquers all. Hello, Susan
Priess, is

Susie Singer Carter (00:47):
Hi Donald.
What's excited?

Don Priess (00:49):
What's happening?

I'm excited. Yeah, we have a
whenever. We have a great guesttoday. And I don't usually start
off with that, but we do. And Iwas thinking about, I was
watching our To Be Announcedguests everyone will know,
because if they clicked on this,they know who it is, so but

(01:11):
yeah, I was thinking about afterwatching his his keener speech
last night again. Just remindedme of all the stuff that we have
talked about with this personbefore, and just reminded me of,
you know, it also reminded me ofof our conversation that we had
with another guest recently,Lizette, who talked about

(01:33):
elopement. Remember when wetalked about elopement and how,
which is not getting married?
For those of you who don't knowwhat that means, nothing to do
with that. Yeah, nothing to dowith marriage and going to Vegas
and doing an Elvis stylewedding. No. It has to do with
that. Would be fun, yeah? No,this, it's, it's really about
people, you know, with dementia,escaping their facility, which

(01:56):
is often leads to disastrous,you know, events, so which
happened to my mom when thefirst time I put her into a
memory care unit, which I had noidea what it was, I didn't know,
you know, and she had gotten outand was like, three miles away

(02:16):
by the time they found her, shewas determined to find her way
home, I guess, right? And theywere mortified. And they do
remember, they called me andsaid, Oh, by the way, your mom
was missing. They didn't call mewhen she was missing. They
called me after they got her andsaid, everything's good. We're
getting her hair done. She'shappy, right? And I was

(02:37):
mortified. And I was like, Oh,my God, like, like, For the
grace of God, right? Yeah.

Don Priess (02:45):
And wait, she's behind a locked door. She's
behind this security lock doorwith somebody sitting right
there. And, you know, we, wecouldn't figure out to get out,
you know, so

I know, right, you had to call some. We
have to call somebody. And thenI was thinking about the year
that she lived with me, whichwas, you know, my mom was so
healthy, so physically healthy,you know, full of life. She, you
know, living with herAlzheimer's. Here we are living
in this loft. She's surroundedwith people that, you know,

(03:18):
basically, like her own littlecity, that she could go and
visit people every day, like allthe people I don't know if you
got, if you're not from LosAngeles, as a filmmaker, I've
moved into a loft in UniversalCity, which is basically it was
like living on a little studio,because everybody there worked
in the industry, and everybodybasically didn't use their
garages. It's very industrial.
They were their offices, orwhatever they worked or they had

(03:42):
some of the recording studios.
My mom was in her prime. She wasoften running every morning. She
had a place to go. In fact, sheended up in one of the our
neighbors who was a big rocksthey were rock stars from
Mexico. They put my mom in theirmusic video, that they loved her
and my mom. Everybody knew mymom. Everyone knew she had

(04:05):
Alzheimer's, but everybodydidn't care. And she, you know,
the gates were open. My momnever left, because she was
happy. We didn't worry about herwandering off into the streets
and and I lived right on apretty busy street. I mean, we
had, there was Valley parking,there's a gate, but the gate was

(04:26):
open. My mom did not leavebecause she had, she was she was
satisfied. She was happy, ashappy as she could be, right?
And it made me think about ourguests philosophy, and how
important it is, and how we haveto think about this. Because I'm
just going to say his name,because I'm this is ridiculous.

(04:48):
You're going to do the formalintroduction, but Alan power,
dr, Alan power, he's justamazing and and all besides
that, he's he's just the nicestperson you'll ever want to know.
And and I think most people thatare advocating for people that
are vulnerable are very nicepeople in general. So I think, I

(05:11):
think, you know, it's we're verylucky in that way that we get to
surround ourselves with peoplelike that, but, but honestly, I
it made me think about how Ididn't even think of my mom ever
saying I want to go home whenshe lived with me, because she
felt out of this, she felt likeshe was home. So that that makes

(05:32):
me feel that makes me feel good.
It's validating, and that'sthat's what we should strive for
everyone right? Absolutely.
Anyway, I just wanted to sharethat story. And I'm sure other
people out there, think aboutit. If you have a loved one,
think about them when they'rewhen they've been the most
happiest. If it doesn'tresonate, what our guest is
going to say to you. So give us.
Give them an illustrious, welldeserved introduction. Don it's

(05:56):
going to

Don Priess (05:58):
be so illustrious.
Are you ready? Gee, Allen,power, MD, is a board certified
internist, geriatrician andSchlegel chair in aging and
dementia innovation at theSchlegel U Waterloo Research
Institute for aging, a soughtafter speaker around the world.
Dr power is also a clinicalassociate professor of medicine
at the University of Rochester,New York, a fellow of the

(06:20):
American College of Physicians,American Society for internal
medicine, and an internationaleducator on transformational
models for care of older adults,particularly those living with
changing cognitive abilities. Inaddition, Dr power is an
accomplished musician, composerand songwriter. He is also a
featured expert in our upcomingdocumentary, No Country for Old

(06:41):
people, an award winning author,Dr power is currently co writing
a book with Professor JenniferCarson and Pat sprig on creating
inclusive communities for peopleliving with a diagnosis of
dementia. We can't wait to divein and hear more. So let's say
hello to Dr Alan power, hello.
Dr Alan power

Dr. Al Power (07:03):
to both of you, yes, please call me say, as Paul
would say, you can call me Al.

Unknown (07:09):
out. That's right,

it's pleasure. And you know, just just listening to
your opening five minutes,you've already touched on about
three hours of conversation thatwe have. You can just tee up if
you want. We right, but we metin person back in June here in
LA and and we just talked andtalked and talked. And so I'm
really looking forward tocontinuing that. First

of all, thank you for being a part of
the show, but thank you forbeing a part of our documentary,
because you're such a big partof it, and and you and I have a
little, little thing we do inthe documentary, that is so you
know, it was organic. If youremember the daughters from hell
that you, that you shared withme, and it resonated so much,

(07:55):
and it's one of my it's mymantra. Now I am a daughter from
hell, and we're and we arepowerful. So I love you for
that, for many reasons, but oneof those is that something

I got from my colleague, Dr Bill Thomas, who
was talking about changing longterm care in general. He said
it's gonna take daughters fromhell to do that. And I think
he's right. Yeah. And you know,whenever you do marketing in
long term care, the keymarketing demographic is, is
sort of the the middlegeneration women, because they
tend to be the ones that takeelder care on, mainly as their

(08:30):
mantle when parents age.

It's so true. It's so true. You know,
not to notice no shade on men,because there are a lot of great
male caregivers who are justlovely. We've met so many on our
show. So like you Al, yourvoice, your voice in our
community. So and who knew how?
I mean, I knew you were beloved.
But we're we both are part of aan international organization

(08:56):
called Open the door. And boy,are you revered? You are one
revered man, and as you shouldbe. Well, let's jump into it. So
I'm doing

great things in Australia, and I'm fortunate to
be going back there in March ofnext year, so we'll be doing a
special session with with thefolks at community homes
Australia. That's

fantastic.
Yeah, yeah, you're, you're,you're all over, and that's
that's so important. So just alittle background for people
that don't know you, how you Iknow your geriatrician, but
which are we were to our dyingbreed? Y'all because it's, you
know, just not, it's not, it's,it's not as respected or or
awarded like it should beacknowledged as because it's

(09:42):
such an important you know, wehave pediatricians out on the
zoos, right, but we don't haveon the other end of the
spectrum, and we need more ofyou. So you started there, and
then what puts you into thedementia realm? You.

Was really my work as a geriatrician. I started out
just as a GP in privatepractice, and got lured into
working in long term care, andgot a job in a very large Long
Term Care Community, first onefor eight years, and then moving
to a second one for almost 14years. And during that time, of
course, even though I had doneit private practice, I was much
more commonly, caring for peopleliving with a diagnosis of

(10:23):
dementia and and particularly inmore institutional, traditional
long term care settings, goodpeople, smart doctors, smart
nurses, you know, people tryingto do their best, but in a
system that really did notsupport the well being of people
living with dementia, and in inthe realm where all of the new

(10:44):
generation of anti psychoticdrugs are coming out, and they
were just being used all thetime for any kind of upset or
any kind of change in a person'smood or their words or actions
and and it just never seemedright to me, because I could see
The sedation, I could see theother side effects of the
medication. And every once in awhile, we would come up with

(11:05):
something that would that wouldactually solve a person's
distress that didn't have to dowith a pill. And I, and I,
whenever that happened, I wouldsay, Well, how many other people
are there that that also, if wejust were smart enough, we could
find those solutions and notgive them these pills. And
along, about that time, in thein the late 90s, I mentioned Dr

(11:27):
Bill Thomas, is when I becameaware of the movement called the
Eden alternative, which was oneof the early movements to
transform aging burst in nursinghomes, but really anywhere where
people live. And by followingthe the system that he and his
wife Jude put together, andlearning how you could take a
system that has been kind ofaccepted as what it is, and say,

(11:49):
No, it can be different, and togo through some of the ways you
can transform a system as Ibegan to be challenged more by
people who frankly thought I wasunder prescribing because that
would make people Sit down andhave conversations, not just
give pills automatically. Ithought, well, how can I take
the same kind of transformativethinking? How can I apply it to
a condition like dementia? Howcan I start see things

(12:11):
differently? Because I realized,when I was confronted with these
challenges, that I had notreally come up with the words
well enough to explain what waswrong and what to do
differently. I hadn't thoughtthat through so that now we're
we've moved forward now to tothe mid 2000s and around 2007 I
started working on my first bookabout that. I'd written a paper,

(12:34):
sent it to the big geriatricjournal. They liked it, but it
wasn't evidence based, and sothey didn't print it. And so one
of my mentors at the University,Dr Bill Hall, said, Well, it's,
you know, it's hard to publishthings these days than our
primary research. Why don't youwrite a book? And that was three
years of me trying to figure itout on weekends when I had free
time in my practicing, you know,and and just putting it

(12:57):
together. And that's when thefirst book came out. And that
was around the same time antipsychotics were being exposed
for all their dangerous andineffectiveness, and that kind
of launched another career forme. So for the past nearly 15
years now, I've just beentraveling and speaking and and
working finding these ideas moreand more

amazing.
Because you as you know we'vetalked about this, and some of
the people that listen to usknow my mom was, you know, a
victim of Depakote, and I didn'teven know she was on it and and
my mom was not, you know,particularly hard to deal with
at all. It was they startedgiving it to her when she first

(13:36):
moved into her memory care,because it probably was easier.
But I didn't know she was onJeff a coat. All I knew is
suddenly my mom, who was walkingfive miles a day, is no longer
walking. She's in a wheelchair.
She's in continent and, youknow, and she, she was, she was
just going downhill like and Ithought it was just the

(13:58):
progression of Alzheimer's, butindeed, her back, her GP, after
she had a checkup, called me andsaid, you know, your mom's on
this drug. It's a Black Labeldrug for people, you know, with
Alzheimer's and dementia. It'scalled Depakote. And do you want
me to order it, you know, takeit off. And I said, Oh my god,
yeah. Nobody asked me. I didn'tknow. So you know you Yeah,

I think a lot of us didn't know. And I will tell
you, back around the time I was,shortly before I was writing the
book, that was the kind of thingwhere, when someone discovered
someone who was having thoseside effects, it was reportable.
They were just reporting thefirst cases in medical journals.
And and I had a couple myselfand and in my first book, I told
some what I called awakeningstories of people who are taking

(14:45):
off their medications and all ofa sudden began to think and do
things that we didn't think theywere capable of doing. And even
though anti psychotics featurein that story, the Depakote,
which is naturally an antiseizure medication, is used this
way, had some of the most.
Stories in my book, because itwas causing amazing effects in
people who did not appearsedated, who had normal blood
tests, who didn't appear to behaving side effects from the

(15:08):
medication, and yet, when themedication was stopped, they had
amazing transformations. Wow,it's, it's, and that's part of
the problem is when, when we saythat these drugs are sedating.
People say, Oh, they're not.
They're not sedated, you know.
But they don't realize what'shappening in the brain isn't
always visible. It's not alwaysfalling asleep in your plate of
spaghetti, you know.

Don Priess (15:35):
It's not being able to walk. It's not it's becoming
incontinent, all those things,you know. It

changes the quality of your life. And it's
the big self fulfillingprophecy, because we expect
people with dementia to decline.
When they get worse, we say,well, it's their dementia. Of
course. This,

this, you guys, this, expect. I heard this
ad nauseam. I heard that anytimemy mom was being neglected, they
go and something would happen.
They would say, well, that'spart of the disease. That's part
of the disease. And if you don'tknow better, you're like, Oh,
well, maybe it is. It's part ofthe disease. So I guess all
those horrible things, like, youknow, UTIs and sepsis and, you
know, pressure sores, that'swhat happens. But it doesn't, it

(16:15):
doesn't have to be that way.
Elopement, yeah. Elopement,right?

I just want to say a tell a funny story in my first
nursing home job, but we alsoworked at an assisted living
place that that was adjacent weactually had an elopement to
where two widowed residentsstruck up a relationship and
became quite close, but becausethey weren't married, other
residents would gossip aboutthem and talk about them and

(16:44):
judge them. And so theyactually, they actually
discharged themselves from fromthe home, went off in the
community. They got married andmoved back in a year later as a
married couple. So I say I haveone. I'd have one episode of
elopement in my career. True.
Oh, great.

I love that. That's a happy story.

But your comment, there's one thing I want to say,
because it's going to, I thinkit's going to feed into so much
of what we talk about when youtalk about what's expected with
people with dementia, one of thebiggest things I do, which
challenges most of theconventional thinking around
dementia, whether it be doctors,researchers, the media, the
Alzheimer's advocacyorganizations, is this idea that

(17:28):
what people are expressing arewhat they call behavioral and
psychological symptoms ofdementia, that people do the
things they do because they havebrain disease, and the brain
disease is somehow causing this.
And this is a big thing, I pushback again against in the
approach I have one of thereasons it works, or when it
works, it's because you arewilling to set that framework
aside and say that is notcorrect. There is definitely an

(17:51):
effective dementia. Itdefinitely affects, it modulates
your response in a givensituation, but the brain disease
is not the cause of thebehavior. And if we can get past
that one bit of thinking, itopens us up to all kinds of
possibilities, which is kind ofwhere I've gone in the past. I
love it.

I love it.
I did that. There's two things Iwant to say about that. First,
first, put a pin in this. I wantto know because you you started
to go down this before aboutwhat is the I want to know what
the what the current model isthat is not working in our in
our homes, and then I thinkthat's a great jumping off
point. Let's start with what themodel is now and how it doesn't
work. Because I think that'sthat then we can jump up and

(18:35):
say, what works, you know? And

you know, when we talk about transforming systems
of care, we talk about threebasic aspects of transformation.
There's the sort of personalphilosophical transformation,
changing how we see things. Thesecond is physical
transformation, so changingdesign, the built environment
that the person is living in,that we work in. And the third
one is operationaltransformation, transformation,

(19:02):
transforming how systems work,and they're all important. Of
what I really work on and what Ijust talked about with the with
reframing how we see these socalled behaviors is is part of
the philosophical thing,changing, rethinking dementia,
as I often say, changing how wesee the condition, changing how
we see people, seeing the wholeperson changing our
understanding of what it means.
For a lot of it, it's viewingfor me, it's viewing dementia

(19:26):
through the lens of disability,rather than just fatal disease,
because I think a lot of thedistress we see is because
people are in the system thatdoesn't accommodate their
changing needs. I was justparticipating in LinkedIn
discussion about this phenomenoncalled sundowning. And
sundowning is so much caused byus because we force people with

(19:46):
changing brains to fit into ourrhythms of rest of activity, to
to think in certain ways atcertain times that can be
fatiguing and exhausting. Andwe've all been to those all day
seminars where we're forced to.
All day, and we start to get abit restless ourselves when we
have to conform to otherpeople's ideas. So, so that's
kind of a concept, and thatfeeds into that third part, the

(20:09):
operational. And theoperational, to me, is really
the key. I can get people tothink differently, but if they
go into a rigid system of care,then the problem is that they
just give up, because thesystem, you know, doesn't enable
them to think differently andact differently. And so my
seminars, unlike a lot ofseminars, not only teach about
Alzheimer's and and, you know,other forms of dementia in a

(20:32):
different way and give peopletools, but they also talk about,
how do you break down andtransform the system of care?
Because if you don't do that,hand in hand with changing your
thinking, then you're not goingto get anywhere. And the built
environment is important too.
It's very important. But I thinkthe other two you really have to
get a handle around those,because unfortunately, when you
think about things like design,when you think about things like

(20:55):
technology, your decisions aboutthose are going to be affected
by how you see dementia, and howyou see people with dementia. So
are you creating a a, you know,an intensive care unit or a high
technology prison, or are youcreating an enabling
environment? And so you can'treally make those decisions
until you've changed yourthinking about what dementia is
and about what people withdementia

need. I love that, and I don't know,
tell me what you think about mymy my metaphor, or my barometer
for how I look at people withwith, you know, a debilitating
disease that will get worse. ButI do it as a mother. I watched
my daughters grow right and whenthey're and when they're babies,
and they don't have theirlanguage and they don't have

(21:40):
their mobility, we give themgrace to listen with other kinds
of listening, right pews. Arethey hungry? Are they tired? Are
they upset? Are they in pain?
And, you know, and we don't, forthe most part, most of us that
love children, we don't get wedon't we don't get angry. We
don't say, well, she's crying,let's just give her a drug and

(22:02):
let her Shut up. You know, wesay something's wrong. There's a
reason why she's crying. There'sright. And so when you don't
have words, that's how you showcommunication. We do it with our
pets. We listen, we watch. Isthere something wrong? Are you
happy we can tell we don't needwords. And you taught me that

(22:22):
one of our first interviews. Youknow, when, when the nurse at
the when my mom was been intothe hospital, and I called and
said, Could we do a a FaceTimeso she could just see me? She's
like, Honey, she doesn't talk.
And I was like, That is theexample of not understanding
right? Anyway. So I mean,

I think that's one of the one of the most basic
things we need to do to supportpeople well, is to become
experts in communication. Andcommunication is two ways. So
it's it's communicatinginformation, but it's also
listening, understandinginformation, understanding
information that may bepresented in the non verbal way,
or through symbolic language aspeople, or through emotional

(23:05):
memories rather than factualmemories. All those things are
part of communication. And Iagree with that 100% and I have
also used those metaphors theonly place where I get a little
nervous because people dementiaare often stigmatized as not
being there, as being less thana person. And so the the only
place where I shy away from themetaphors a little bit is

(23:27):
anything that that leads us toinfantilize people with dementia
in our minds, back in verychildren, or dehumanize them.
That's where it gets a littletricky, but, but there are
parallels. They absolutely areparallels, if we can, if we can,
you know, learn to use otherways of interpreting people who

(23:47):
don't speak our language. Itcould even be an adult person
who's from another country. Andyou're, you're communicating in
two different languages. But youknow, as the travel guru Rick
Steves says, all you need in acountry is about five words and
lots of hand symbols and almosteverything you need to do so
have to have the verbal languageto understand people. And the

(24:11):
other important part of that,the other important part, which
is an operational thing, isproximity. So having the same
people care for the same people,and not rotating staff all the
time, because the people havehuge challenge. That's, oh yeah,
huge challenge. But the peopleI've worked with who are
consistently assigned, they knowpeople's needs beyond words.
They can tell me somebody needssomething even though they

(24:33):
haven't said anything. They cantell me when someone's coming
down with a serious illnessbefore there are any physical
signs that might bring a nurseinto the room.

Yeah, that's right. They know their
base. It's like, yeah. It's likeme. It's like me taking Don had
to go the emergency for his backa couple weeks ago, and they
were they gave him a shot in oneof his his pushes on the whites,
whatever. And and all of asudden he was getting. Clammy.
And the nurse goes, Oh, you'regetting clammy. I go, he's a
painter. I could tell them that.
And they went, Okay, got it.

(25:05):
Went right into it, because Iknow, Don right, but if you
know, and that's the thing, whenyou know somebody and you have
proximity, like you said, that'svery important to know that. And
she was like, got it, got it,and put them down on the chair.
Everything was good.

Don Priess (25:20):
And Susie mine early years with your mother, yeah,
with Oh no, it's gonna say withSusie with her mother, because
her mother could not communicateany more verbally. Yeah, she
would always see even though herdaughters knew her, their
grandmother very well. I knewher very well, very, very well,
but Susie could always she hadthat unspoken language that she

(25:42):
knew what, when something waswrong, if something that, then
none of the staff could and but,and that takes a lot, I mean, to
take to have somebody, a staffperson, there, that that's so,
you know, there all the time,and really gets to know them,
because they don't have time,you know, under Our current
system, to get to know them.
That's,

that's a whole nother

bed, but that. But they're so they're so
intertwined, though, and youcan't improve one without the
other. That's why I say it's nota three legged stool. I had a
story about that early in mynursing home working career.
There was a woman who lived withAlzheimer's who had no
verbalization, and she couldwalk around, she could smile,
and she could give people hugs,but there were never any words
for years, and she started, atone point, grinding her teeth,

(26:30):
and it was a really loud, Imean, you know, and she would do
it sometimes, and she would notdo it other times, and it was
but it was so loud, it it wasannoying to listen to. It felt
like it must be painful. We dideverything, you know. We checked
for we checked blood tests, wechecked for a urine test. We had
sent her to the dentist to lookat her teeth. Nothing at all,
but her nursing assistant, whowas consistently assigned to

(26:53):
her, after a few weeks of thesound and off, came to me and
she said, Doctor power. Inoticed something. Whenever
Millie is grinding her teeth.
Seems to be a day when she's alittle bit constipated. So we
gave her a stool softener, andit went away now. Now, you know,
there's nothing in my medicaldegree that helped me figure
that out. It was the proximityof of the assistant to her, and

(27:13):
the constantly getting to knowher, understanding the
associations that I couldn't seestopping in there periodically
that made the difference, andthat's why, once again, it's not
so much a matter of degrees, youknow, medical degrees or post
graduate degrees. It's havingthe right perspective and being
close to the person developingthat meaningful relationship

(27:35):
that gives you answers. Andthat's why system has to favor
that.

It's kind of common sense, which blows my
mind, because we can you imagineif your child went to school and
had a different teacher everyday? I mean, in that teacher
didn't know that student, like,that's their strengths, that's
their weaknesses, all thosethings. I mean, it wouldn't be
very successful, right? And itwould also be very jarring, and,
and, yeah, I think we know thatwith other demographics, but we

(28:06):
but because of, as you say,ageism and ableism, it's just
you know that this particulardemographic is so devalued and
misunderstood, and

it's over medicalization of the person and
the condition takes away ourcritical thinking skills. As you
say, we just write it off.
That's the dementia we don'tstop to think critically about.
Well, why is that person doingthat? Why? Why? Why did your mom
try to leave a locked place?
Maybe it was because it was alocked place and and we have
already found studies andworking on a new book that show
that locked doors actually are aprimary cause of distress, the

(28:41):
feeling of forced confinementactually makes people want to
leave, and opening the doordoesn't cause a mad dash. In
most cases, people look aroundthey're content that they're no
longer trapped, and they're okaywith that. And so once again,
our thinking, our logic aroundthese things, is kind of broken
by our view of dementia, andthat's why that's always the
first step is to broaden ourthinking about the whole

(29:02):
situation.

Don Priess (29:03):
We'll be right back.

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I think that comes to what you talk
about. You know, the riskmanagement, right? So, and I
think that is just so valuableto to to tell everybody about,
because it makes so much sensewhen you would explain it. So
please explain it, because itdoes make so much. Can I just
say, Here's my mom when shefirst wanted to I just wanted to

(30:26):
say is when my mom went intomemory care and they locked the
door. And here's my mom with herpocketbook, right? She seems
she's a no. She's like, Why isthe door locked? Excuse me, the
door is locked and I can't getout because she doesn't
understand that, why it'slocked. And I can tell her all
day long, Mommy, you haveAlzheimer's, which I tried to be
very obvious, you know, veryhonest with her, it's I would be

(30:49):
infuriated if someone locked mein a room.

Yep, yeah. Well, well, I've been visiting here in
California. I've actually beenworking on the risk chapter of
our new book, and so I've beenwriting and writing and writing
and thinking about this. So I'lltry to encapsulate just a few
points from what is already upto 7000 words right now. But
anyway, first of all, first ofall, the Rethinking dementia

(31:14):
part, what is normal and whatisn't normal. And I remind
people that walking and goingthrough a doorway is normal
behavior that's not a a dementiarelated behavior. We do it every
day. What's abnormal is lockingthe door and telling people they
can't leave. We're the abnormalones, not the person with
dementia. So, so first of all,we have to think about we've

(31:35):
created this, this, you know,artificial environment, and then
we're blaming them for not beinghappy with the environment we
force them into. As far as riskgoes, you know, there there's
two sides to risk. There'supside and downside. Risk is
just the chance that somethingwill turn out differently than
what you think is going tohappen. So if you know, if Susie
is living in memory care and shegets up and walks on her own,

(31:58):
what's the chance she can fallthat's the downside, but also,
what's the chance that yourstrength and balance might
increase? That's the upside, orif you go outside, yes, you can
step into the road, but you canalso get some sunshine, some
fresh air, eat better, sleepbetter, be healthier, be
happier. So you can never lookat one side or the other. We can
every decision we decide to docarries some upside benefit and

(32:20):
some downside risk, but alsoeverything we decide not to do
carries some benefit and somerisk, and the amount of each
depends on the decision anddepends on how you go about it.
So really a chapter, we'll talka lot about looking at both
upsides and downsides and how wecan maximize the upside minimize
the downside. There's no riskfree environment. There's

(32:41):
nothing that's 100% risk free,and we have to accept that, and
we have to say, how can weimprove quality of life with a
reasonable assumption of risk?
And that part of that, you know,involves knowing the person,
knowing their values, becausesome of us like skydiving, and
people like me wouldn't jump outof a plane unless was going down
in flames, you know. So we allview risk. We view risk
differently, and we have tounderstand, we have to

(33:02):
individualize each person'sneeds. So there's a lot about
that, but I also talk about therisks that we didn't expect. And
you know, we had the perfectexample that everybody knows
about, and that is COVID. Andwhen you just looked at COVID
from the risk benefit ofinfection control, then it was
obvious, lock the doors, keepfamilies out, put people in

(33:22):
their rooms for 14 days, weargowns, gloves, masks. That makes
sense from the infection controlstandpoint, but many, many 1000s
of people got sick and diedbecause of isolation, because
they were medicated, becausethey couldn't sit in the rooms
for 14 days, because they weremissing their routine dental and
other medical checkups becausethey couldn't socialize, they
couldn't see their families,they were lonely. And so there

(33:44):
are other aspects of risk thatare just beyond the certain what
if we do this? What if we don't?
And one of the things thathappens is, when you lock the
door, people get upset. There'san old study from 30 years ago
we quote, that shows that themajority of episodes of distress
happened during the time whenthey locked the door and did no
other intervention. So the lockdoor was causing the majority of

(34:06):
distress. And we know that manypeople who live in memory care
are getting antipsychotics,which are damers, which kill
people. And so we can say thatwe are actually saying we're
keeping people safe by lockingthe door, but then we're giving
them a drug that is known to beone of the most dangerous drugs
we prescribe for people withdementia, because the locked
door is making them upset. Sohave we made them safe? Have we

(34:29):
really kept them safe? And youknow, you talked about how your
your mother didn't feel right,part of it is, if we don't feel
like the place we are in iswhere we belong, then we're
going to try to escape. So partof it's a locked door. But we'll
also talk a little about how dowe create well being? How do we
create the feeling of home in aplace that may not be your
house? How do we supply thoseneeds don't don' make you want

(34:51):
to escape and look for themsomewhere else. And so a lot of
it is about how we fulfill thosevarious aspects of well being
for people so that they don't.
Feel the need to escape. Sothere's, there's a lot in that
chapter. Needless to say, it'snot just about walking away.

Don Priess (35:07):
Yeah, I think that comes into the, you know,
position, like, Okay, I'm goingto play the per i going to play
our world now for the people whohad, has somebody at home, who
had didn't lock the door andthey wandered, and now they're
locking the door because ofthat, not taking into all that
without this knowledge of howyou can make your home, so they

(35:28):
don't want to walk out. So whatdo you say? It's like they say,
wait, wait, I didn't lock it,and they they wandered away. I
can't have them wandering away,you know what? What do you say
to them?

Yeah, and you know that does happen. I mean, we
interviewed my good friend, mygood friend, Joanna fix, who
lives in Colorado. She actuallyran for the Mrs. Colorado
pageant, and I think she won. Asa person live with Alzheimer's
because she wanted to erase thestigma. She went out once, she
went out once, you know, in thesnow, and got a little

(35:56):
disoriented, but she saw themailbox, saw the number, and
knew that she had to go back inthere. So those things do
happen. And so it's acombination, first of all, of
meeting needs, of giving theright cueing that doesn't give
you 100% guarantee people willtry to leave, but rather than
lock the door. How do you createsafeguards? How do you create
enabling technology? How do youmeet the needs that even family

(36:18):
members don't always know how tomeet because they're taught by
the doctors and others to focuson the disease and not on well
being. So they might do for aperson, take away their
autonomy, take away their senseof meaning, just by very kindly
and lovingly taking over forthem. Sometimes people leave the
house because it's a crisis.
They feel like I need to gosomewhere where I have some
control over my life, so justgiving people some of this

(36:39):
instruction can help them tolearn how to relate to their
loved one in a way that doesn'tcause a crisis, too. But I want
to share one quote. And youknow, I have some really
brilliant friends, and one of mymy colleagues, who's just a
wonderful friend and a brilliantfriend who I did a fellowship
with decade ago, Dr Emmy Kiyota,who's an environmental

(37:00):
gerontologist, and she talks alot about the built environment
and dementia and about designfor aging, and she says
something brilliant at aconference couple years ago. She
said home can be defined as aplace you come back to, and if
you're never allowed to leave aplace, it is never going to feel
like your home. And I thought,Well, great. What a great
concept. Then, you know, whenwas a place you leave and come

(37:24):
back to and right? So the placesthat see somebody leave and go
outside with them for a while,and if they say, we're looking
for home, go out and say, well,let's go. Let's go look, you
know, and walk out for a whileand talk, eventually the person
will be satisfied that that theythat there's a place over there
that that is giving them whatthey need, that has given them

(37:44):
the freedom to explore a bit,and will often say, Well, let's
go back inside and they'll bealright. Because, because home
is so much, you know, you talkabout that at the beginning,
it's so much a metaphoricalthing. Not, not 25 Maple Street
with the green shutters. Youknow, it is, it is security,
it's comfort, it's sense ofbelonging. It's control over
your life. It's maybe lovedones. There's people that you

(38:06):
feel you have a relationshipwith, and once again, we get the
consistent staffing smallhouseholds, people that get to
know each other, that createssome of the attributes of home
by creating familiarity,belonging. So even though it's
not your house, you can do thatin long term care, and you can
make a place be comfortableenough that people will feel
okay there and not feel likethey have to run away.

Agreed. Don do you think, I mean, I have my
opinions on this, obviously, butI think a lot of the risk
management that is put intoplace in our facilities are
financially driven because, andI think that you know, because
you mentioned a story in yourkeynote about a woman who was
visiting a place, potentiallyfor herself, and said, Oh, that

(38:51):
that courtyard is beautiful, andand the door was locked, and she
said, Oh, they said, Oh, that'snot for the residents. And she
had why it's beautiful. It lookssafe to me. It's just a nice
little courtyard. It reminded meexactly of a place that when my
mom, where my mom's living, Icould picture it, and they said,
Oh, well, somebody went outthere and fell now no one's
allowed out there, which is justbizarre, but it feels like

(39:15):
that's a financially driven riskmanagement move. Am I wrong?

It is, and that's the perfect example of how
critical thinking getsdestroyed. That was my good
friend and colleague, Karenstoby, who told that story and
and Karen had the brilliantanswer. When the woman says
somebody fell and got hurt, shesaid, Tell me, has anyone ever
fallen indoors and gotten hurtbefore? So the idea is, if
someone falls in their bedroom,do we say you can never be in
your bedroom again? Or if theyfall in the dining room, can you

(39:40):
never eat again. So this ideathat outside is some horrible
place, even though it was areally designed safe courtyard.
So once again, we're notapplying critical thinking. And
I think there are some drivers,the regulators are certainly a
driver. And they give they giveproviders to be fair and
impossible task. They don'trespect a resident's rights as
citizens and. They say, keepthem safe at all times, but one

(40:01):
of our rights is to accept risk,and so we're stuck in a in a
catch 22 there. The other bigone comes from from lawyers who
are willing to sue for thesethings. Another big one comes
from the media. If somebody getsout like your mom did, that will
make the newspapers, and yet,the 1000s of people who are
harmed by anti psychoticsbecause the door is locked,

(40:23):
never get written up in themedia. Why aren't we talking
about those as as fervently aswe talk about the people that
get out and

we will be in No Country for Old people.

And then lastly, society too, I think often
family members have unrealistic,unrealistic expectations.
People, people move to long termcare because they are, because
they have risky situations, andlong term care is meant to help
that. But there are noguarantees. People have
conditions like dementia, theyare at the end of the life. You
can't expect that someone isgoing to go there and they'll

(40:57):
never fall and they'll never getsick, and then they may never
try to leave because, becausethat's life, you know, it. I was
just writing about this theother day. It's interesting to
me that people, you know, we sayin long term care, we're going
to give great nursing care andgreat medical care, and we know
people are going to get sick, weknow they're going to die, and

(41:17):
yet we're not afraid to saywe're going to do our best, even
though we know that that peopleare human, why can't we say that
with dementia and with lockeddoors, we're going to do our
best, and we know people arehuman, but we're going to do our
best. And why can't acceptanceof risk be part of an Advanced
Directive? If I don't want aventilator, can I also say I
don't want to lock door and I'mwilling to accept the risk of

(41:39):
that? Why are right? You know,why are we talking about that
so? But we

should human rights. There is a human
right, though, and I think thatwe have that, and we don't, we
don't exercise it. I have aquote for you al to use for your
chapter. Okay, here, I'm goingto bring it into popular copy.
It here. This is our the popularculture. I really talk to you
about the song, Take on me byAha, is one of my favorite lines

(42:06):
in that song, where it goes it'sno better to be safe or sorry.
Either one is not better thanthe other, and I love that
because it applies to love, itapplies to risk, it applies to
everything in life, either oneis not better than the other.

I will try that.
But I'm going to warn you, whenI wrote my second book, I quoted
a lot of people in a lot ofplaces. And of course, I quoted,
you know, music, all this stuff.
The only place where I had topay any royalties, and I had to
pay a lot was for two lines ofBeatles songs. Maybe, aha, will
be cheaper. We'll see fair use.
I don't know. It's a great, itis. It's a great. And that is

(42:51):
the catch 22 and the idea is,people want perfection. There is
no perfection in life. You know,to come out to California, we
had to get in the car and go theairport. We had to get on a
plane and fly here, you know, togo to the beach, you know, I had
to sit in the sun. I had to goin the waves. You know, there
could have been a riptide. Youknow, lots of things could
happen, but I am balancing thoserisks with the potential for

(43:12):
benefit and saying which one isgreater. And so what we have to
do is we have to make thepotential for benefit greater
the the potential for risk, andthat's what our book is all
about, is how to maximize theupside by going through these,
what we call practical pathwaysto inclusion. So it's not just
about opening the door. It'sabout what does an organization

(43:32):
do to prepare and to create thebest possible environment for
people to be happy and and to beable to get outside in the in
some sort of a some sort of arelatively safe way. And that
may involve technology. It maybe GPS type things. You know,
we're not going to talk aboutspecific technology, because
it'll all be obsolete by thetime the book comes out, but
we'll talk about the principlesbehind choosing technology so

(43:55):
that people can then take thatlook at whatever products are
out there five years from now,or whenever they happen to read
this and then know how to choosewisely.

Don Priess (44:06):
And this is the most difficult time, because you
don't have huge track records ofthis, where you have some you
have some track records. So whenyou family goes into a facility,
family goes to facility andsays, okay, but this we don't
lock. There is no lock here andthere. Well, wait a minute. What
happens if they do walk throughthat door? Are there safeguards
or anything in place that saydon't it's it's okay, you know?

(44:32):
Jennifer

and I started, yeah, Jennifer and I started
this book, and then we broughtPat spring on his third author.
Pat was the CEO of Carroll Woodsretirement community in in
Chapel Hill, North Carolina, for30 years. They are on on dozens
and dozens of rolling woodedacres. They have a pond, and
there are no locks and there areno gates, and they have people
with dementia and people withoutdementia. And she was a CEO for

(44:55):
30 years, and they continuealong these ways. So she is
bringing a lot of the practical.
Aspect of, how do you deal withthese things and and so part of
is the all hands on deckapproach, because they are a
community. They everybody knowswho the people at risk are. If
somebody sees Mary Smith walkingout the door, it could be
somebody working inhousekeeping. It could be a
receptionist. People know who towatch out for and what to do if

(45:18):
they see somebody, how toaccompany them, or how to get
somebody who can accompany themto find out what they need. So
it's so you once again, it'sit's about it takes a village,
as they say, it really does todo this. But and she has an
amazing history. And we alsointerview several people in the
US and Canada who havesuccessfully unlocked their

(45:39):
doors, and who tell theirstories. They tell their stories
of of the failures, you know,and what they learn from it.
They tell how the struggles, butthey also tell the great success
and how it improved people'slives to do so. So we'll have,
we'll have plenty of thosestories. And I know memory care
community, we're looking, yeah,it's, you know, people market
memory care. But if you look atat long term care and assisted

(46:00):
living in the United States, Ihaven't got the numbers in front
of me, but a large majority ofpeople with dementia in those
two types of communities areliving in integrated, unlocked
parts. So we have selectedpeople who live in memory care,
and yet the majority of peopledementia do not live in locked
memory care. And so if they cando that. Let's figure out how
the rest of them are doing it.

(46:23):
And and you know, even if I gointo a memory care place, the
majority I've been to, theremight be 30 people living there,
and there might be people whoyou'd have to worry about if the
door was unlocked, but they'reusually just a few. You might
have 30 people in there, maybefour or five of them at most
would actually get into troubleif the door were open. But we're
locking all 30 of them upinstead of care planning and

(46:43):
individualizing a program forthose five people. And that's
where the system is important,because rigid systems create a
one size fits all. Type ofapproach fits all, fits nobody
that that's about.

It doesn't work in any situation. It
doesn't work in education. Itdoesn't work in medical it
doesn't work in anything. If itdid, there'll be one size
clothing, right? I mean, itdoesn't seem perfect. It doesn't
work. I want to say that when Iwas under two years old, because
I believe, moved from this housethat I'm thinking of. I was 18
months and I used I was I walkedreally early. Can you imagine

(47:19):
that I walked like, I think mymom said I was, like, seven
months old. I would climb out ofmy room and I was out. I out the
door. I wanted to go places andthe

knowing, you know, I guess I can believe that,
right?

And so my mom, I opened the door. My mom
said that she couldn't keep itlocked. The neighbors all knew
me. I went to the neighbor nextdoor, because she had teenage
kids, and she made breakfastearly. I was going to go get
pancakes, so I come over there,I take my diaper up, and they
go, they call my mom and go,Susie's over here. She needs a

(47:52):
diaper, and we're giving herbreakfast, right? I mean that it
was the community, because thatwas who Susie was, and Sue and
they and, you know, I'm notsaying it was the safest thing
my mom did, but I'm just sayinglike I was a happy little girl,

and let's go back.
Let's go back hundreds of years.
You know, neuro diversity,including dementia, was kind of
an accepted part of society. Youhad, you know, Tom sitting over
there in the corner, and that'swho Tom is. We didn't lock him
away at some point. And you canread Michelle Foucault, I
supposed to understand all this,at some point, we started
locking people away. Startedcreating systems of confinement

(48:26):
for people that were not normal,like our prison systems. Yeah,
exactly, yeah, but, but this isabout accepting diversity in
society. And once again, if youlook at dementia as a cognitive
disability through that lens, weknow there's disease there, but
every disability is caused by adisease, an injury, a condition
of birth. So why can't you say,Yes, dementia is a disease that

(48:49):
does involve disease of thebrain or injuries, but it also
can be viewed for the socialmodel of disability lens. And I
often use the metaphor, youknow, if we had a person in the
wheelchair who had to fly thestairs and no ramp, we wouldn't
ask them to use the stairs, butwe ask people changing brains to
conform to our systems or we orwe lock them if they can't, and

(49:10):
and if the person tried to usethe stairs and got upset, we
would never say that his hisanger is a symptom of his
paralyzed legs. And yet we saythat the anger of a person with
Dementia is a symptom ofdementia. And so, so, my God, so
true. My My greatest mentor, thelate Richard Taylor, who lived
with Alzheimer's in the firsttime I met him in person. You

(49:32):
know, the the keynote statementhe made, made that stuck with me
is, I'm not dying of a fataldisease. I'm living with a
chronic disability. And thosetwo shifts from dying to living
disease to disability changed myworld when I heard him say that

amazing.
And isn't it like we put so muchstock in memory? Like
remembering, we do it with ourfriends and family. We say,
Well, I told you that. Don't youremember? Oh, my God, you have
no memory. Like, what's wrong?
With you, you know, to someonewho's doesn't have a cognitive
disease, we put so much, youknow, stock in it as if it makes

(50:06):
you smarter or better orwhatever. And it's like, you
know, I say memories are soyesterday, because who cares,
right? I mean, at some point itdoesn't really matter. Like, you
know, I learned from one of myother mentors, which is, you
know, Judy Cornish, but the Donmethod, who taught taught me
when I was as my mom wasprogressing, instead of making
my mom have to think about whoshe was seeing, when I walked to

(50:29):
the door, I let her know, Hi,Mommy, it's your favorite
daughter. I'm here. Well, I'myour only daughter, but I'm
still your favorite daughter.
It's Susie, so she wouldn't haveto think about it and feel
embarrassed and and we, and shealways was so great. She'd be so
happy to see me so and that wasthat was a game changer for me.
And

you know that my Karen Scobey, who I mentioned
her original career, is animprov comedian, so using
improvisation skills, but yes,and approach to things, and
another person, if you haven'thad her on yet, Anne Basting,
MacArthur Fellow, who has beenshe wrote a book called forget
memory and talking aboutexploring creativity, you know.
And she has a whole, a wholewebsite called time slips, where

(51:13):
she shows different ways toengage people with very poor,
you know, semantic memory increative endeavors and how you
can engage people to do thingsthat you might not have
expected, and and so there are alot of people who are Pia
contos, I just saw come up onLinkedIn using dance and theater
and and she and Sherry Dupuy andother people in up in Ontario,

(51:36):
or we're part time, are engagingcreativity for people with
dementia, there's so Manydifferent approaches. And when
you just look at dementia as anarrow you know, Can you spell
the word world backwards? Do youknow what day it is? You know?
Then all of a sudden you startseeing less of a human being,
and you expect less. And there'sanother self fulfilling

(51:57):
prophecy, you don't provide anenvironment where the person can
thrive, and they don't, and yousay, well, they had to mention,
what else And

Don Priess (52:03):
what's more, what's more important than right now?
What is more important than thismoment and making this good as
it can be? Yeah, people

with dementia a couple things better than we do.
One of the things they do betterthan we do is we live in the
moment. You know, we pay a lotof for mindfulness training and
yoga and Qigong and and all thethings that we do. And yeah, the
person with dementia can bethere in the moment. And if we
can learn in the moment, we canget things from them in
conversation or in interactionsthat we wouldn't get if we're

(52:32):
just focused on our tasks. Andthat's another thing I teach.
Often I

say that spend time with someone with
dementia and they are be yourteacher for them, because they
can only live in the moment, andit that's so beautiful. That's
all that matters, really at theend of the day, you know? I
mean, it's, it's, it's just soimportant, and it's actually
such a beautiful way to to viewlife that I learned so much from
my mom through this journey. Ithink anybody would if you just

(52:59):
slow down, people in

dementia are our best teachers, and how they
care. And, you know, someone,someone said to me, once you
know, well, well, why bother ifthey're not going to remember
this, why bother to do this? AndI say, you know, imagine,
imagine, go back to your highschool years, you know. Imagine
there was a Saturday night whenyou without your friends, and
you had a great night. Do youremember every Saturday night at

(53:22):
the age of 40 or 50 that you hadin high school that you enjoyed,
and if not, does that mean youshouldn't have gone and done it
back then? Because if I told youI'm from the future, you're
going to forget this night whenyou're 40 years old. So So don'
Both bother stay home and readthe book. Would you have stayed
home? Of course not. Becauselife is about experiencing and
as I get older, people that,people like me, who get older,

(53:44):
realize that the moment becomesso much more precious than than,
you know, the future or thepast. Yeah, we're

Don Priess (53:51):
saying, you know, they don't remember here they
but they do remember here. Theykeep it. This is where, this is
where their memories are. Now,

Don is pointing to his heart, in case
you're not for those of youlistening, yeah, and it's like
it's also the dopamine that isreleased. You know, dopamine is,
is, is it makes you feel good.
And so what? What bettermedicine than to go in and say,
sing a song, would hear someoneyou love, or read something that
they love and and and tell themhow much they're loved and make

(54:21):
them laugh like that was my joy.
If I could make my mom laugh, Iwas, you know, six, six.

You know, we haven't really, we haven't
delved deeply into the approachI've been using. But, but those
joyful moments and thoseengagements, regardless of
memory, they fill the differentdomains of well being that
increase the reserve andresilience of people with
dementia so they don't getpushed to the point where they
have crisis reactions and sothat really, my approach is all

(54:52):
about, you know, using sevendifferent aspects of well being
and working proactively, notreactively, to keep those
glasses full so that i. Um, sothat the person doesn't get to a
point where these crises happen.
And so, you know, it's not justjoy, but it's autonomy, it's
security, it's meaning, it'sgrowth, it's identity,
connectedness. You know, theseare all things that all human
beings need, but we've neverbeen taught how to proactively

(55:14):
put these in care plans. Andonce we do that, we find that we
not only, instead of justreacting and calming people in
the moment, we actually preventthat distress from happening in
the first place. Because theroot cause was not the brain
disease, it was this lack ofwell being and the system and
this education system thatdidn't teach people that that's
still critically important, evenif you live with a condition

(55:36):
like dementia.

Can you just talk about, you talk a lot
about, you know, besides lockdoors and, like, you just said,
autonomy and, well being, like,the segregation of people with
dementia. And how does thatwork? What? What is that the
cause of and why do we do it?

I think a lot of it is stigma and fear. You know,
we we fear dementia. People sayit's more feared now than
cancer. It's the number one, thenumber one feared condition for
adults. And we don't understandpeople and and we don't want to
look at it, because it remindsus of what could be a potential

(56:22):
future for ourselves. We aretaught that these people, you
know, have behaviors that theysome people think that they can
be dangerous because they havethis condition. And so we kind
of we, we kind of want to nothave to have to engage with that
in our daily lives. And some ofthe most stigmatizing people are

(56:43):
older people. So you will see inretirement communities people
saying, I don't want thosepeople around. Even some people
complain that there are too manywalkers or too many wheelchairs
in the dining room, because onceagain, you know, ageism was, was
defined years ago as as aprejudice against our feared
future selves. Yes, I think thathas a lot to do with this. And

(57:05):
once again, it became amarketing ploy to tell people
this is better care. And in ourbook, we will look at all the
studies and show how it is notbetter care. In many case it
many cases, it can lead to moreharmful effects to separate
people away from other people.
So, so a lot of it is justmisunderstandings, really, and
that's where education is socritical, wow,

so, and that really is the key, right?
It's really the key is theeducation for and for people
like stigma is such a bigproblem. I saw it in not only my
my family and my community, Isaw it in the healthcare system,
you know, where just themisunderstanding and the stigma
of somebody with dementia or anycognitive, you know, issue, you

(57:52):
know, mild cognitive issue, evenyou know, the lack of patience,
the lack of understanding, Thelack of respect, yeah,

yep, I was speaking for the Alzheimer's
Society up in Minnesota, doingan annual symposium. And after I
gave my keynote, the woman cameup to me in the audience, a
community member, and she said,You know, I've just been
diagnosed as having mildcognitive impairment. Now we
know mild cognitive impairmentthe majority of people do not
progress or go back to normal intheir testing in years down the
road. It is not you know, giventhat you're going to get

(58:24):
Alzheimer's, but she was labeledas having mild cognitive
impairment. She said her familywas already saying you can't do
things anymore. We have to takeover for you based on that
number. Once again, when youlook at people as a number and
as a certain set of veryreductionistic skills, then you
don't understand thecapabilities people have. You
know the woman who can't tellyou where she lives or the names

(58:47):
of all her children, who can sitdown and play the piano by ear
and improvise as she does? Iwould, you know, I've seen, I've
seen people who can do that. Sowe're not, we're not viewing
people properly, and thereforewe're not giving them the
opportunities that they need tolive as well as possible, in
spite of

Don Priess (59:04):
and when you're and when you, when you, when you
segregate people with them andthey, it takes away all these
other people who could betalking to them, who could be,
you know, in a different waythan then as a community, yeah,
who can't communicate with eachother. Put them in places where
they can communicate. You know,you look at some of these
countries where they're havingcollege students live, literally

(59:26):
moving into facilities andliving there, yeah, as opposed
to, you know, to say, no, let'sput all the old people over
here, and let's put, you know,the segregation makes no sense.
And the

benefit is, yeah, oh yeah. Many people find older
people who are retired, who mayfeel like they're not being as,
you know, doing as as muchmeaningful, purposeful work as
they used to. They have a theycan have a caregiving role. They
can they can actually helpsupport other people that have
other needs and and as you say,it's beneficial both ways. I've.

(01:00:00):
Gain so much the people I'veinteracted with who have lived
with the diagnosis that thatit's it's about relationships,
and it's about relationshipsbeing bi directional and and
benefiting all partiesAbsolutely.

Susie Singer Carter (01:00:14):
And we breed that fear by by
segregation. We breed it likeeven with children. I remember
bringing my friend's daughter,who was three years old, to
visit with me with I was takingcare of her for the day, and I
brought her to visit my mom. Ithought, Oh, that would be so
nice for both of them. She wasso petrified walking in that
place, I could tell she hadnever seen other people. And my

(01:00:37):
my granddaughter, yeah, go on. II've

Dr. Al Power (01:00:39):
often said this, that segregating people with
dementia is kind of likesmoking. It's easier to not
start than is to stop once youstart doing it, because when you
when you do have that blockseparate area, you are telling
the other people who live thereyou're right. Those people don't
belong with you. And then whenyou try to open it up, you face
the consequences of the holeyou've dug for yourself by

(01:01:00):
perpetuating that stigma, you'reabsolutely right

100% I mean, am I like I was going to
say? And you you've seen it inbecause I included in the
documentary with my two year oldgranddaughter, who only saw my
mom on Zoom because it wasduring COVID When she was born,
and when she finally got to seeher, she wasn't afraid at all.
And here's my mom with very highacuity at this point. She
climbed into bed with her, laidher head on her, looked at her,

(01:01:26):
laughed, made her laugh. Theykissed each other, and she was
like, Nanny, Nanny, Nanny,Nanny, not a fear in her, not a
fear. And I think that's reallyhealthy. That's

Dr. Al Power (01:01:36):
why intergenerational engagements
are so important. There's athere's at least one nursing
home. I believe it's in Kansas.
It actually has a kindergartenembedded in the home. They have
a little sort of schoolhousebuilt, and they spend some of
the time in there doing lessons,and some of the time doing
things with the people who livethere. And like they'll do
morning calisthenics, they'lltake the hands of somebody, and
they'll do calisthenics and andthe physical therapists say that
the kids get better range ofmotion from the elders there,

(01:01:59):
than than they do in physicaltherapy sessions, because
they're working with kids, andthey're doing all this stuff,
and

that makes so much sense. Great. Yeah.

Dr. Al Power (01:02:12):
Korea, Korea, South Korea, has been one place
that has, for many years, beenintroducing, you know,
connecting, connectingteenagers, in particular,
children with with older people,with people with dementia, with
people in long term care, to tryto help them have better
understanding, reducestigmatization of the older
generation.

I love that. Okay? I have, I know we
could talk for like 17 hours. Iwant to talk about one thing
that you touched on in yourkeynote, which was about the the
fact that we don't, and thisplays into community. We don't
have enough people to care.
Yeah, right, yeah.

Dr. Al Power (01:02:53):
For all the other arguments we you know, we argue
civil liberties, we argue it'snot better care. We argue that
it's a cause of distress, allthese different things. We argue
that it's a one size fits all.
That isn't true of dementia,but, but one of the arguments
that that really is not so muchphilosophical as is
mathematical, is the fact thatwe are aging globally. And in
1950 there were approximately 12working adults for every retired

(01:03:14):
adult in the world. And in 2000that went down to nine to one.
And in 2050 they will. It'sprojected there will be four
working adults for everyretirement adult. So we can't it
goes beyond dementia. It'sreally aging. We can't just keep
building separate campuses forolder people to live on, because
there will be no one to buildand staff and maintain them,

(01:03:34):
because we have still havelawyers and teachers and
construction workers andfirefighters and all the other
people, everything, society andfilmmakers, you know, producers.
Yeah, exactly, so, so, so agingin community is the only
solution. And even when you talkabout the most beautiful places
that you can think of for peoplewith dementia, we can't just

(01:03:58):
accommodate the increasingnumber of people with dementia
by separate, gorgeous, evenopen, inclusive campuses. We
have to find ways to keep peoplein their communities longer.
There will always be somecongregate living, because not
everybody can live in their ownhouse or apartment until the day
they die, but we've got to domuch better at it, and that's
why the recent discussion thatwas raised in the political

(01:04:19):
campaign about expandingMedicare to to cover more home
services. These are importantconversations, because we do not
have enough support for livingat home. You know, if you got a
lot of money, you can get careaids or nurses, or if you just
been in the hospital, you know,for a week or two. But beyond
that, it's very difficult to getthe support you need.

(01:04:39):
Communities are not designed inAmerica for aging. Ironically,
some of the best communities areplaces like New York City, where
you have a grocery store in thecorner and you have public
transport. When you live in asuburb and you can't even get a
bottle of milk without hoppingin your car, you're in trouble.
And so we've got to reallyfigure out, how can we better
how. Create communities thatembrace and support each other

(01:05:01):
as we age, and part of that isthe natural return requirement.
Communities, the the villagemodels, all the different things
that are out there. There's,there's no one size fits all.
Once again, it's, there's manydifferent varieties. But we need
to engage our politicians, ourcivic designers, our our
planners in our community, inunderstanding better how we can

(01:05:21):
accommodate ourselves as we age,instead of just thinking about
some other place we can movepeople to.

I think it's out, yeah, I think, I think
it's, it's the collectiveconsciousness that we've created
that it needs to shift. And likeyou said, you know, I think
Ashton Applewhite says it to whowe have in the in our
documentary, who's a realadvocate for, you know, anti
ageism, who said just what yousaid, it's, it's really, it's

(01:05:51):
really a bias against yourfuture self, and that is a
disservice for all of us. Andit, it really does. It is going
to take the community to to takecare of each other and and get
back to what what's important.
We are so individualized. We'veindividualized ourselves into
oblivion, basically. And and

Dr. Al Power (01:06:13):
one thing I've said being a baby boomers, that
I think baby boomers have thepower to transform this, but
first, baby boomers have toadmit they're aging, and then
once they do, hopefully they'llchange things. But it's, we're
kind of a tough generation.

Well, I mean, let's, let's talk to
those, to all the millennialsand Gen Z's out there, who also
are, you know, it's going toaffect everybody. So let's, you
know, get there. It's going toget there. So well, is there
anything else that you wanted totalk about? We're going to have,
we're going to have al back withhis partners,

Dr. Al Power (01:06:48):
come back, and we'll talk about the book more
specifically as we go along. Andwe'll definitely do that. I
mean, yeah, we could talkforever. Such a delight that
Susie and Don that's justspending time with you because
we hit on so many importantpoints, and you ask so many
critical questions that too fewpeople are asking in politics or
in society. And so it's great tohave a forum to do this and, and

(01:07:11):
I'm really looking forward to NoCountry for Old people and and
hoping that will also sparkdiscussion and get people, get
people up and talking, becausethat's what good good
filmmaking. Does it makes peoplethink? It makes people think
that's all

we need.
People can Yeah, just talk. Wecan act, yeah.
We love you, yeah. I mean, welove you so much, and we are so,
so grateful to have you on ourshow. And you know you, of
course, you're going to be backand we're going to continue the
conversation, because there's somuch more. Yeah, there's so much

(01:07:48):
more to talk about. And, but,you know, do, do look up Al, all
of his wonderful work that's outthere. I mean, he, when I was
first doing the documentary, youcame so highly recommended from
everyone that I talked to. Andso, you know, but, but who knew
you were such a cool guy, a cooldude, and, you know, a musician,

(01:08:08):
and we love that. You know, I'mall about the music, and you
know, all every all theinformation, how to reach out,
how to get all his all of hisbooks, and watch his keynotes,
watch his keynote. It's so good,and then we'll be in the show
notes. So super. A lot of lovehere a love test, and that's
why,

Don Priess (01:08:28):
you know, we run, yes, we're going to continue
this love fest even after wehang up. Because one reason for
that is that love is powerful,love is contagious, and love
conquers all we do. Thank youfor watching or listening or
wherever you saw us today. Andif you like what you saw, please
subscribe and share and allthose fun things, and we're

(01:08:49):
going to see you next time andhave a great one.

Bye.
Everybody love you. Take care.
Be good, be fun. And, you know,do some risky things. Yeah,

do it. Bye, bye.
Bye.

Angela Fairhurst (01:09:11):
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