DR. MARC ROTHMAN: Transforming Caregiving and the Perception of Dementia Through the Arts

Episode Transcript
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Unknown (01:24):
when the world has got you down,

Don Priess (01:27):
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
positive podcast that takes adeep dive into everything,

(01:48):
Alzheimer's, The Good, The Badand everything in between. And
now here are your hosts, Susiesinger, Carter and me. Don
Priess singer, song, sing asong.

Susie Singer Carter (02:04):
Hello. I'm Susie singer Carter,

Don Priess (02:07):
and I'm Don Priess, and this is love conquers all.
Hello, Susan,

hello, Donald. I wonder. I want to
first. I want to thank everybodyfor coming today, because we
always forget to do that, and wedo want to thank you for joining
us, because there are a lot ofplaces you could be and a lot of
people you could be listeningto, but we're happy you're here.
So thank you for joining us,right? Yeah,

Don Priess (02:32):
I like that. We should do that more often. We
should thank people, yeah, allright, thank you. Thank you.

I'm thinking you too. Don I just
finished reading, listening toOprah's latest book. For what, I
know for sure, this is thesecond, the second edition of
this, because she wrote it, Idon't know, a decade ago. Now
she's revisited, and it's, it's,you know, filled with pearls. A

(03:01):
lot of it is about beinggrateful, and that if you take
moments to be grateful, youcan't you know it really does
make a difference when you arejust buried in your life and
you're you're just on automaticand you're do go in, especially
if you're in a creativeendeavor, which is part of this

(03:22):
is the theme of today, is, iscreativity, and when you're, you
know, when you're in somethingso deep and you're get
frustrated, because there'salways going to be challenges,
right? At least, if you couldstop and take a moment and say,
here's what I'm grateful for.
I'm grateful, you know, for allthe little steps that you've
made, for everybody thatsupported you, for you know,
someone who complimented youknow your, whatever your your

(03:46):
the way that you said hello,thank you for saying hello.
Someone you know acknowledgesthat that's so beautiful. And
we, we take those things forgranted. So I just thought I
would share words of wisdom fromOprah.

Don Priess (04:03):
Yeah. Okay, well, yeah, because you do, you get so
mired in what's you know, what'swrong, that you forget what's
right. And there's a lot rightthat we don't tend to think
about, and we need to learn hard

on ourselves. We're hard on
ourselves right because we wantto, especially if you're a type
and you want to do well, and youthink, Oh, I'm going to, you
know, why didn't I do it thatway? Why didn't I do How about,
how about looking at what youdid do, and say, I'm so happy
that that happened and thatworked out well, right? And,
and, you know, anythingworthwhile is going to have

(04:41):
challenges and issues. You know,we're not nothing just happens.
It just doesn't fall into yourlap. If it did, everybody would
be doing it. So, you know, justbe acknowledged. Just
acknowledge yourself for thethings that you do well and and
then be grateful for the peoplethat are around you that can
pick up the other pieces. I.
Yeah, right, yeah. It's like myfirst mentor, Sean McNamara, who

(05:02):
directed, well, he directs a lotof stuff. He's got Reagan out
right now, but he gave me myfirst breaks in this industry.
And he always said, you know,his, his, his secret sauce was
surrounding himself with peoplethat were more talented than
himself. So I think you knowthat's not that's, that's, that
is a humble way that's

Don Priess (05:24):
not hard for me.
That would be so simple for me.
No problem. Got that one done,done and done.

Fox chick,

Don Priess (05:37):
and I'm thankful for that.

Yeah, yeah, right. Okay, Me too. Me too,
yeah, Don. And I always say,like, we make one good, one
smart person, because as a, as aproduction company, was, like,
some things like I would neverthink of, and I'm like, oh my
god, Don, how did you think ofthat? And then he'll the same
thing with him, and so you fill

Don Priess (06:00):
in the rest of the stuff. Yeah, yeah, yeah.

So anyway, speaking of creativity we have,
we're going to talk about thattoday, art and all those, all
the lovely things that I loveand you love, and most people
love that and how it works intocaregiving and dementia and
Alzheimer's and and otherprogressive diseases, and

(06:23):
everything in life really,right? I mean, everything in
life is more more enhanced andmore joyful. And I can't imagine
life without art. I just can't.
So why would? Why would? Whywould we keep it from anybody?
Boggles the mind, right? Solet's get into talking to our

(06:46):
guest, and you're going toyou're going to introduce Dr

Don Priess (06:53):
Mark Rothman is a physician with over 20 years
experience in elder care on artand dementia care and aging at
home. Dr Rothman is CEO of Lizzycare, a full service dementia
care company that provides theteam tools and resources that
families need to manage theirdementia journey at home safely
and effectively. He is changingthe conversation around dementia

(07:17):
and dementia care through thearts with his non profit
organization, dementia spring,supporting the work of those who
depict dementia in variousmediums. Each week, dementia
spring publishes an artistspotlight showcasing this work,
including a recent piece that weare familiar with, none other
than Susie singer Carter's Oscarqualified short my mom and the

(07:37):
girl you might have heard of it.
Each year, the organizationprovides grant funding technical
support and marketing to artistsand art programs via the
dementia arts Impact Award. Weare so excited to dive into this
wonderful world of creativity.
So let's say hello to Dr MarkRothman, hello. Dr Mark,

hi everyone. How are you? Hi.
Susie, Hi DonHello. Dr Mark. We're so excited
to have you here today, becauseit's our favorite subjects that
we were talking about, right? Somaking educating people about
dementia and Alzheimer's andprogressive diseases and de
stigmatizing and talking abouthow we do it with the arts, and

(08:19):
I think that you are a hero forthis. So thank you for leading
the way and also supportingartists that want to you know,
also be a part of changing thenarrative. Thanks, Susie, thank
you. Thank you. Thanks.

Marc Rothman (08:38):
It's great, great to be here. I'm really grateful
for you guys, thankful for yourkind introduction. Don, thanks
for that and for calling outsome of the work that we do here
at dementia spring and thefoundation, the nonprofit that's
behind dementia spring. Andgrateful to you, Susie, for
connecting with us, sharing withus some of your amazing work. I

(08:59):
really loved watching your film,and I'm excited to continue
talking to you all about thearts and dementia. It's, you
know, it was really a labor oflove. Is how this all started
for us here at dementia spring.
I'm happy to share a little bitabout that with you and talk to
you about Lizzie care as well,which is allowed me to, it's
really allowed me to, to bedoing dementia and Alzheimer's

(09:20):
work all day, every day, kind ofusing both sides of my brain,
right the medical side of mybrain and the business side of
my brain, but also the artisticside. You know, after after a
long day of helping familiesmanage through the through the
dementia journey, navigate thedementia maze and think about
important things from aphysician standpoint, you know,

(09:41):
things like diagnoses andtreatments and recommendations
and caregiving and things likethat. It's great I get to sort
of turn the other side of mybrain on and read through a
script about somebody dealingwith dementia, or read about a
program for dance in a assistedliving. Facility across the
country, or think about aninteresting VR model to help

(10:02):
people with dementia, you know,see things that they haven't
seen in a long time. And all ofthat work is just such a great
compliment to the busyness ofbeing a doctor and executive all
day long. It's just fantastic.
Wow.

Well, congratulations on making that
balance, because that's, that'sa that's not easy to do. So you
that's, that's very special.
And, you know, just again, thegrateful, the G word, I mean,
it's it, we're grateful to havesomebody like you that has an
understanding of both sides,right? Because I, I don't have
all, you know, I've only learnedby rote of what it is means to

(10:40):
have dementia or Alzheimer's.
So, you know, I stumbled throughlearning what was the right way
to proceed in the journeywithout, you know, with Google
as my master, but that was aboutit. And then mostly my own
experience, you know, likemaking a lot of bad, horrible

(11:01):
mistakes, and then going, okay,that's not the way to go,
pivoting a lot. So it's really,it's really very valuable that
for you to give bothperspectives, both lenses, to,
you know, to really provide thatinformation for everybody, and
maybe, you know, shorten theirtheir their tenure, their

(11:23):
learning experience, becausemine, you know, it can take a
long time to you finally go, oh,that doesn't work.

Don Priess (11:31):
And it's always changing, because the the
disease is always changing. Youknow, to say, Joe, that worked
yesterday, but guess what?
That's not working today. That'sright.

So how did you get into this? What brought
you into this focus of of, youknow, cognitive decline, really,
and and, you know, mixing itwith your with your passion for
arts. Obviously, it has to be apassion.

You know, when I was in medical school, I was
exposed to what's called anAlzheimer's and dementia
Research Center. And lots ofgreat universities have those,
probably a few near you. Andthat was really the first time,
as I was, you know, goingthrough medical school, learning
about the, you know, the heartand the lungs and the liver and
the kidneys and all theimportant things that keep the
body going. When I made it intothe Alzheimer's center. It was

(12:21):
the first time that I reallyappreciated how much Alzheimer's
is a disease of the entirefamily. It's a disease of the
entire community, in a way thata lot of other diseases really
aren't, and that that reallyspoke to me. I kind of have a
humanistic nature in me, and Ilike that. It didn't scare me.
And, you know, a lot of folks gointo medical school, they want

(12:42):
to find a problem, fix it, andare not comfortable with things
that can't be fixed so easily.
I'm a little bit morecomfortable with things that
can't be fixed so easily, thatare a little more complicated.
Require a little bit morewrestling with it and figuring
out things, iterating as you go,like you did right learning day
after day, and also just thecomplexity of families, because
it does take a village right totake care of a loved one who has

(13:03):
Alzheimer's and dementia of anykind, really. And so I was
exposed to that, and I reallyliked that a lot. And I also was
exposed for the first time totrue interdisciplinary care,
which for me, is all about notonly being the doctors who do
the work, but the nurses, thesocial workers, the
nutritionists, thegerontologists that I met at the

(13:24):
ADRC there at New YorkUniversity, and I just loved how
they worked together in concert.
And for me, that's been a modelfor my whole career. Part of the
reason I chose geriatrics as aspecial, as a specialty, is that
it gave me the opportunity towork among teams, really, really
diverse teams, right? You know,you can't, you kind of equate

(13:47):
the playing field a little bit,because what the social worker
or what the dietician has to sayabout this particular problem,
I'm sure you've encountered aproblem related to mom not
eating or not being able to chewor not being able to digest, or,
you know, different foods thatshe like, that contribution is
really just as important as thephysicians contribution, right?
And so I really love that.
That's really what got me intogeriatrics and got me and just

(14:09):
propelled my my career. It waslater, and I've always been an
arts person. I was a reviewerfor The bellevue literary review
back in medical school, andwonderful journal that describes
illness and how people cope anddeal with illness and overcome,
sometimes succumb, sometimes,but navigate those journeys, you
know, through a creative lens.

(14:31):
And my wife's also in the arts.
She's a book restorer and bookrestorer and amateur
photographer. And you know whathappened is when the pandemic
hit, all the people that we knewwith dementia who were accessing
the arts, and all the people whowere leading on the other side,
from the artistic side, to helppeople with dementia, they were
all out of work. They were justdone in a day. I mean, the world

(14:53):
just shut down. And so the folkswith dementia were cut off from
all the creativity and. And theartists were, you know, screwed.
They couldn't find theirclients, they couldn't get paid,
they couldn't make a living. AndCece and I, my wife, decided
this is the time to launchdementia spring and the dementia
spring Foundation, because werealized, not only do these

(15:15):
populations need to be connectedmore and more, they need to be
connected better than it's beendone in the past. It's not that
organized. How all this happens.
It's starting to happen betternow, and also that I've always
felt very passionately that weneed to change the narrative
around dementia and Alzheimer'sdisease. I always look back and

(15:36):
I say there was a period of timewhen you couldn't say the word
cancer out loud, right the Cword, nobody would say it over
dinner. And eventually, when youthink of cancer right now, you
think of pink balloons andparades and marches for breast
cancer, you think of ribbons andawareness and people who are
surviving and thriving. Samething was largely true with

(15:58):
heart disease. You could not saythe word heart attack. In my
grandparents generation aroundthe table, you would whisper it,
you would never say it out loud.
And now, when we think of heartattacks, we think of stents and
Lipitor and red pillows that youhug after surgery and Heart
Walk. I mean, you just this iswhat your brain thinks of, even
HIV, which was essentially, youknow, a death sentence at the

(16:20):
beginning eventually becameassociated with rainbows. So I
knew that, as I knew that inhealthcare, the same thing can
happen for Alzheimer's and musthappen for Alzheimer's, because
the prevailing view when you saythe word out loud is nursing
homes and wheelchairs, right?
And that does not represent thetotality of the experience of

(16:43):
Alzheimer's disease anymore atall granted in the past, people
were hidden. They were kept awayfrom their neighbors. They
largely were made prisoners intheir own homes. Sometimes
there's an enormous amount ofshame and fear that still
exists. I'm not denying that itexists, but the reality is that
tons of people with Alzheimer'sand dementia are living today.

(17:05):
They're living their lives as Ijoke sometimes with people they
don't love to hear it. Peoplewith mild cognitive impairment
and early dementia are on theroads with us. They

I was gonna quote you. I was gonna quote you
with what you said about whenyou were you know, presenting my
my film. You said, I'm going toquote. And you said, as I remind
folks all the time, personsliving with dementia are all
around us in the supermarket andat the park, in the theater and
then and even driving so, right?
And I love that, I love that yousay that because it's true, and

(17:39):
we picture people differently,like, you know, and I say, in
the beginning of my journey withmy mom, I tried to shield her
from the public because Ithought that for her own
dignity, I thought. And then Iand then I suddenly realized
that the more that I shared whatwas going on and allowed her to
be her, people stepped up. Andpeople didn't, didn't dismiss

(18:01):
her or treat herdisrespectfully. They embraced
her.

Yeah, yeah. And, and, you know, and, and if you
think about the length of timethat these diseases can last,
it's not all wheelchairs andnursing homes. That's a portion
of it, but that is not evenprobably the majority. And so
our viewpoint of this mustchange. It's so myopic to think
of wheelchairs and nursing homesinstantaneously, we have to

(18:30):
fundamentally change theperception of this in the
public's minds. And you know, alittle humble pie, the doctors
aren't gonna be the ones to doit. I love us. I'm part of, part
of the squad. I'm in the team.
I'm a physician and a proudphysician and a healer. The
doctors are not going to be theones to change the narrative for
society. It's people likeartists who are going to do that
through books and films and songand dance and just incredible

(18:55):
expressions. You know, they havethe freedom to sort of be to
exaggerate, to make the pointright, to point out the humor in
the journey. Physicians don'thave the time to do that, or the
inclination or the training todo that. So that's sort of how
dementia spring got born, and wedecided we were going to write.
We were going to fund grants toindependent, grassroots artists

(19:17):
who are trying to get workcompleted, so that we can help
bring that to the public andteach everybody that there's a
new way of looking at memoryloss, dementia and Alzheimer's
in this world, and that's ourchallenge for tomorrow.

I love it, and also I'm going to add that
it may not be the doctor'sresponsibility or their
inclination, but on the otherhand, our health care system and
our providers need to be alittle bit more educated on what
it is to have Alzheimer's, whatit is, because a lot of them
don't know, and a lot of people,like in you know, first

(19:55):
responders, er rooms, don'treally understand Alzheimer's.
And. Mentioned and mistaken forother things. And so there is,
you know, a even wider net thatwe need to throw in terms of
education. You know, they maynot have, they don have to
understand it or embrace it theway we do, but they need to for
the for to be responsible is tounderstand that somebody with

(20:22):
Alzheimer's, who may not bemobile, that's their base, and
maybe they're they're they'renot speaking anymore, that's
their base, but they are stillenjoying their life so and just
because someone's in awheelchair, um, doesn't mean
that they they're not valuable,because they're valuable to
their family, and they'revaluable to what they can still

(20:44):
give. And so that's what I wantto share, too, at that stage, is
still valuable and still anddeserves dignity and quality in
care and empathy, yeah.

Don Priess (20:58):
And also on a practical end, because, you
know, Susie, it led with yourmom. She was because the doctors
did not understand herAlzheimer's. It led to her, I
mean, something that changed herlife and your life, and everyone
around her life completely whenthey basically, you know,
strapped her down and druggedher because they didn't know,

(21:20):
they weren't able to tell whatwas going on and how to deal
with it. And it changed her lifeafter that forever, you know.
And so it's so on a health on ahealth point. It's very
important. And and firstresponders to what we showed in
the film in my mom and the girlyou know with the police that
they didn't recognize, and it'shard to recognize sometime when
they're at a certain stage wherethey can be completely, you

(21:43):
know, normal, and you know,you're talking, and then
something happens, and, youknow, not being able to
recognize that. That's, that's,it's very important.

It really is. Yeah, what do you Yeah, no,
I

agree. And first of all, and Susie, you said what
you said extremely well, Icouldn't have said it better
myself. You know, when I didspeaking of having to train lots
of folks in society to recognizethese people, when I did
training for disaster managementafter 911 I had to write up

(22:16):
plans for fire departments ofhow to get people out of nursing
homes effectively. They didn'tsort of understand how to get in
and out of nursing homes safelywithout putting those people in
additional Jeopardy. Luckily, alot of that work was done, and
then some of the trainingexisted for things like the
pandemic and other things likeSARS and other illnesses that

(22:39):
came through and we had disasterresponses, but it's a little
things like, you know, how doyou behave with somebody who's
acting unusual in a supermarket?
Right? Most people don't thinkto themselves, could this person
have memory loss? Could I bewitnessing somebody who really
is harmless and fine, but hasmemory loss? Is not crazy,
right? Is not, it's very hardto, you know, again, people

(23:01):
really are so used to seeingphysical signs of disease that
they can record, that they canrecognize, oh, they're limping,
right? Oh, they, Oh, they, youknow, have a wheelchair. Oh,
they have oxygen on. Theyobviously have a pulmonary
problem dementia. You know,it's, can be invisible until you
really spend time with somebodyand understand what they're

(23:24):
going through. So it's veryinteresting. The other thing
that really always inspired meabout the arts for dementia in
particular and Alzheimer'sdisease, is that if you think
very anatomically about thebrain, the portions of the brain
that hold the keys forparticipation in the arts,

(23:44):
appreciation of the arts andmemory of the arts, for example,
music from your youth or songare actually in a different part
of the brain right then, thenThe part that allows people to
answer their families questionsall day long. And I always say
very I always say it veryspecifically like that, because

(24:06):
I need to separate out for folksthings that you can do, that
this person still has efficacyto do and could potentially
enjoy, by the way, and benefitfrom. We can talk about the
benefits of the arts for peoplewith memory loss and a little
bit, but that is fundamentallydistinct from the part of the
brain that is not giving you theanswers you want when you ask

(24:26):
them 30 questions thisafternoon, right? They're very
different, right? The ability ofsomebody to understand your
questions. How was yourbreakfast this morning? What did
you have for lunch yesterday?
Did you see your daughter,when's your when's your
granddaughter's birthday? What'smy name? All of these questions
everybody is asking all daylong, for better or for worse,

(24:50):
the parts of the brain that thatare not functioning well, that
don't give you the answers youwant to, that are totally
distinct from the parts of thebrain that gets somebody. Up
singing, dancing and lovingtheir life for an hour in the
afternoon, even with moderatedementia. So I try to tell
people, this is a this is awonderful opportunity to work on

(25:12):
the parts of the brain that arenot the same parts of the brain
that are making you frustratedall day because you can't get
answers to your questions andpeople are acting weird. So
focus on that part. Focus onthat part.

There's a there's one of my mentors is
Judy Cornish, who, you know fromthe Don method, and really makes
a great distinction about that.
And she talks about the rationalmind, which is the mind, the
part of your mind that makesdecisions, and, you know, makes,
you know, executive decisions,right? And then, then there's
the emotional side of your brainand speech and speech and

(25:43):
speech, right? And so those twoare distinctly different, and
and so, and she reckons that theemotional side really never
leaves like that never getsimpaired. And I agree. I saw
that with my mom, and she hadthe disease for 16 years, and i
i to the to the day she took, tothe moment of her last breath

(26:04):
she was there, emotionally,responsibly in with her
emotions, very appropriately.
And so I did, I did witnessthat, and I do agree with you.
And I mean it, I was told thatthat art, well, of course, from

(26:27):
my mom, who was a singer, thatwas her cognitive reserve, but,
but I was told that art isstored in the hippocampus, which
doesn't get affected. Is thattrue? Or

it's the opposite?
It's the speech and a lot of thelogical stuff and processing is
largely in the hippocampus, andthe emotional pieces are stored
elsewhere, the response tocolor, the response to sound,
the risk, the emotionalresponses are stored elsewhere.

Don Priess (26:58):
So we've heard all for a long time. I think people
are too dark for you.

I apologize.

Don Priess (27:02):
Oh, it's very dramatic. It's great. It's fine.
The sun went

behind the cloud. I'm sure it'll come out
in a minute.

Don Priess (27:09):
It's great. You're fine. So we've heard for a long
time, and I think a lot ofpeople know that music is
definitely something that youknow that that taps in, but now
you've explored all differentmediums, or you're, you're very
and, and are we finding so thevisual, the like, what? What are
those different mediums? How didyou find that? Why? Why they can

(27:30):
respond to that too.

So you know, if you take a step back for a
second and you look at whatwe've learned over the last,
let's call it 30 years, aboutthe connection between arts and
healing, or arts and medicine.
Maybe it's no surprise, but Ithink it's worth reiterating a
little bit the effects of thearts have been shown to be
positive on a whole bunch ofdifferent ways. Right? So
obviously mental health, thearts have been shown to help

(27:57):
people with PTSD, to help peoplewith anxiety and depression, to
help people out of crisissituations. It's helped people
with post traumatic things, evenlike after being in the ICU and
hospitalized. So the connectionto mental health in general,
both as a treatment and also asa preventative measure. Right to
build efficacy confidence hasbeen well shown to demonstrate

(28:19):
it. The arts have actually beenshown to help medical education.
The arts have been shown toincrease empathy among medical
students, which is somethingthat's very important, because
we're healers, and we need to beempathic to the people that we
care for. You know, art has verymuch been shown, and I'm
including, you know, music,visual arts, performing arts. I
tend to talk about the visualand the performing arts less

(28:42):
about books and writtenmaterial. It's been shown to be
great for pain control and formodulating the need for
aggressive opiate therapies,right? You can decrease the need
for opiates by helping peopleuse the arts to get through
their pain crises and improvetheir quality of life, and you
know, and then obviously, indementia, obviously with

(29:03):
children, the arts have beenshown to help tremendously in
many diseases, in children withcoping, as well as with efficacy
and confidence. And fordementia, the arts has been
shown very nicely, consistently,pretty consistently, to improve
mood, to decrease anxiety anddepressive symptoms, to improve

(29:24):
quality of life for caregivers,to potentially reduce
neuropsychological symptoms andthe need for strong medications
that sometimes get used Forthose symptoms, and it's
actually been shown to improvesome short term memory, maybe
not permanently, but to improvesome verbal fluency and improve

(29:47):
some autobiographical memory inpeople living with dementia,
even partially advanced. So youknow, it might sound strange for
a physician to be talking about.
Using the arts in the care andthe treatment and the support of
people with dementia. But itshouldn't come as much of a

(30:08):
surprise to people. So I thinkthat's it's always, it's always
worth kind of backing up andreminding ourselves that the
arts to your point earlier, likethey're everywhere, they're
beneficial, and it's actuallybeen studied with research,

right? I think one thing that, just to,
you know, double up on that isthat, you know, when my mom was,
you know, obviously she was, Isay, straddling the fence, which
is when the movie was takingplace. So she knew she had
Alzheimer's, but was fightingagainst it, right? And when she
sometimes, she would say to me,I don't know when I get addled I

(30:42):
can't think, like, I can't thinkwhen I get addled. So which, you
know, which is to get, you know,anxious or and when you can't
remember something, we all getanxious. How many times have you
gone? Oh my god, I just hadthat. It's like, I oh my god.
It's scary. When you can't thinkof something, it's frustrating,
it's scary, it's embarrassingsometimes, and all those things

(31:04):
exasperate the the that themanifestation of the disease,
right? So when someone is calm,like my mom, when I would give
her music, because music wasour, was our magic sauce, that
was our magic sauce. And I andcomedy. I would see her relax. I

(31:24):
would see those synapses work ofso much better, and to the point
when she couldn't even speak.
There was, I was doing a dog andpony show for her one day, and
out of nowhere, she just said tome, I love you like that. And
that was like, to me, that waslike she ran a marathon. I've
said that before, because atthat point it was really
difficult for her to get a wordout, and so, but she was so

(31:47):
relaxed that that it allowed herto whatever it takes. I say,
like she looks for the word,finds it, gets it there, puts it
on the muscles, and then gets itout. It's a lot when you have
Alzheimer's, right? And I thinkthat we need to keep that in
mind. And another thing to yourpoint is that making it more
difficult on somebody with likearts makes it easier to

(32:13):
communicate when it's not easy,you know, it's, it's, it's, it
creates a shutdown. It does. Itjust shuts them down. So like
when one thing that Judy taughtme was when I would go into my
mother's room to see her, when Igo to visit, I would never say,
hi, mom. Who am I? Or I wouldn'tsay, Hi. Do you know who I am? I
would say, Hi, Mommy. It'sSusie, your favorite daughter.

(32:35):
I'm here. And then she'd get abig smile on her voice on her
face, right? Because she didn'thave to think I told her the
answer,

yeah, yeah. 100% 100% and I always think about it
also in terms of the, what Icall the pervasive isolation and
the pervasive sort of lonelinessof the dementia journey. And the
way I think about it is it'ssort of it sort of emanates out,

(33:06):
because for the person withdementia, almost every single
family that I work with withdementia of any stage, really,
even early, their world hasalready started to shrink
inappropriately quickly. And alot of what I focus on is trying
to make sure that we stop thatfrom happening and actually
expand the world a little bitagain, for everybody's sake.
Because what happens is, whenthe world shrinks, for the

(33:28):
person with the disease, I findthat for the family around them,
or at least for the number onecaregiver, which often is
someone like yourself, theirworld starts to shrink too. And
so you end up in this sort ofweird cycle of shrinkage. And
almost every time I get involvedwith the family, through the
work that I do with Lizzie careand I bring the arts in, we can

(33:50):
expand that world, right? Thatworld can quickly, quickly
enlarge at least a little. Andit is amazing the responses that
families feel like, Oh, thankGod we're back to doing some of
these fun things. We haven'tpainted in a year and a half, we
haven't gone hiking in a yearand a half. We didn't go drive
around in the old model car thatdad loves for a year and a half.

(34:12):
It's just, you know, it's justbeen pervasive. The families
have been blocking, tackling,dealing and coping every day and
trying to get their lives doneand take care of whatever they
have to take care of, cats,kids, whoever. And, you know,
everyone stopped doing fun,activities, exercise, hobbies
and the arts are just like agreat way to bring somebody,

(34:34):
even without skills or training,right? It's just a great way to
bring them, sort of back outfrom the tunnel that they're in,
and it's just, it just is sofascinating to watch that happen
with families. And so you thinkabout the benefit of treatment
through art. And I havecolleagues, colleagues of yours
and mine, who are determined toget the arts, like, paid for by

(34:55):
insurance companies, likethey're fighting like tooth and
nail. But when you think. Aboutit for a treatment for isolation
and for loneliness and boredom.
I mean, it's cheap, it's safeand it's effective. I mean, you
know, that's a trifecta for adoctor, right? Cheap
therapeutics, safe therapeuticsand effective therapeutics.

Don Priess (35:18):
I mean, such a benefit. Oh, go. I just wanted
to say, such a benefit for thecaregiver, because, you know, I,
as I watched Susie go in and doher dog and ponies continuously,
eventually, and especially ifthe other person can't, you
know, communicate back, it'slike, what am I going to talk
about? What am I going to say?
What can, you know, what is, andit's a big stress on the
caregiver, like, what? And itmakes them not want to do it is

(35:42):
because it's like, oh my God,that's that's a negative thing.
So this, it's something you canshare. You both enjoy it, and
you both enjoy together.

And if I could double down on that for a
second, it actually also, I findaffects them sort of the second
degree of the circle aroundfamilies, because if the if the
loved one is struggling to havethat conversation right, on a
daily basis, friends and friendsand other distant family, they
pull away very early, right?
Yep, because, because, becauseit is hard. I mean, my wife and

(36:15):
I, we've taught with grandmaSandy, who's going through
Alzheimer's in New York, and wevisit frequently. We've taught
our kids back to something yousaid, Susie, we've sort of
taught our kids to not bedependent on the conversation
when we visit. Let's bedependent on closeness. Let's
get really close, right. Let'ssit really close and touch

(36:35):
right. Let's, let's hum, let'ssing a song. Let's let's let her
hear us talking to other peoplewithout kind of trying to get an
answer out of her all the time.
And so back to isolation andloneliness. I'm helping to care

(36:56):
for a family where a companionwas brought in to do some of
this with their loved onebecause they weren't doing it,
and the husband actually had wasslowed down from some other
personal reason, he couldn'treally keep up with her. What's
interesting is that old friendswho hadn't made an appointment
to see this person in a reallylong time, now that they have a
companion, they can go see them.
So it's just really interesting.

(37:19):
So what do they meet? They meetat the museum, right? Like,
that's how you know, you justsort of, you build it around the
arts, partially because in lotsof communities, the arts are
free, yeah. And if you thinkabout all these artists that we
work with at dementia spring,you know, people like, you know
the song Works program, peoplewho are doing things online with

(37:41):
dance. You can get a lot of thisstuff for free online. They're
practically giving it away. AndI know it's people feel
uncomfortable, but you know, theminute you begin a song, or the
minute you begin somethingcolorful and vibrant, or acting
a little bit, or playing comedyroles and being goofy, you'd be
shocked. People who have memoryloss, they jump right in like

(38:04):
they're just ready to go.
They're

ready definitely. Yeah, I have a quick
anecdote. When my mom was atmemory care, and there was, we
got to know everybody in thefacility that were the
residents, and they became myfamily, right? And one woman
named Ruth, who didn't talk atall. She had a she had a
companion with her. She didn'ttalk, but she was, you know,

(38:27):
always social. She was there,but didn't say a word. And we
were singing one day around thetable, and we were singing a
Beatles song. We were doingharmony, and all of a sudden she
starts to sing with us. Out ofnowhere, a beautiful voice, and
I and her caregiver said, Ruth,you're singing. And she goes, of

(38:49):
course, it was so incredible,like I get chills just saying
that right now, because Iremember that was, you know, I
always knew that music workedwith my mom, but then I saw it,
you know, and and also, to addup to that, it's like, whenever
I would go, my daughters aresingers too. We'd sing acapella,
or we'd put on, you know, analbum and sing along to it.

(39:11):
Everybody came around,everybody, they loved it,

right? For sure, yeah, for sure.

Don Priess (39:19):
We'll be right back.

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so in terms of arts, like, I know from my
mother, there got to a pointwhere not, not very long into
her disease, when it wasdifficult for her to watch a
movie, right? Because, you she'svery zen. Like, you know,
Alzheimer's is the epitome ofZen. So she couldn't keep the
narrative. She couldn't keep thestring, the thread at all, and

(40:42):
it was frustrating. So half, youknow, like, very quickly she'd
be off looking around, she's notreally watching and and I think
it'd be, you know, just becomesa source of frustration. And I
see all the time in nursinghomes where they just real
people into a room with a moviegoing, and they're no wonder

(41:02):
they're asleep because theycan't follow it, right? Yes.
What do you think we could doabout that?

Well, there's a lot of great programs that are
out there. They're all sort ofsmall cottage. They're
happening. They're justbeautiful things that are
happening, usually by thestrength of will of the
recreation therapist in thebuilding. But there are folks
who are doing all kinds ofphysical, tactile things, with
yarn, with thread, with colorfulribbons. There are people who

(41:32):
they always have music involvedin that, right? They make sure
that the music is happening.
Some of the more structuredprograms really have it down
right, where it's sort of likewe start out with a song, right?
We sort of wake up the creativebrain. We wake up the creative
spirit with a song together, soeveryone's sort of singing and
getting in the mood. And it's,it's, it's triggering very deep
and old memories from childhood,from camping trips, from church,

(41:54):
from wherever, those memoriesare deep down. And we know that
people with dementia have theold memories still ingrained
there. They can't remember whatthey had for lunch yesterday.
But there's imagery from thevery, very remote past that
stays inside the brain for avery long time, not always
easily accessible, but when youtrigger it with a song or with

(42:15):
something like that. So programslike that will start out with
song, then they'll move intosomething more tactile, with
colors and with shapes, withpens, with things to do on a
paper, things that stick tothings very, very unstructured,
let people do what they can.
Usually the successful ones sitpeople around a table because,

(42:37):
even because that socialization,that sort of being together and
having activities together, andhearing little bits of laughter
and little bits of cajoling,that's actually very social,
right? I mean, that's a verysocial thing most of the time in
places like that, they're onlyput together at tables for
eating. So eating is essentiallya silent activity. So right. So

(43:02):
now you've got activitieshappening like that, right?
Sometimes really, really goodprograms will also then bring
in, potentially a little bit ofan intergenerational Conan here.
Maybe they'll have childrenvisiting, or they'll have high
schoolers come in and sort ofjust talk and chit chat and just
hearing those voices again, evenif you can't understand all the

(43:24):
words, as long as it's notdisturbing, it can actually be
sort of enlivening. And then, ifoften, in these programs,
they'll trigger in a little bitof dance. So for those who are
not in a wheelchair, who can getup and dance, you'll find often,
a lot of times, they'll want todance now, right? Because the
music's still playing. They'rehaving a good time. And so, you
know, these programs are toughto run. So I used to work in a

(43:47):
very large nursing homeorganization. These programs are
hard to run. They cost moremoney than a lot of people want
to spend. Right? A lot of timesthey're making tough choices
around beds versus, you know,fixing the roof versus staffing,
which is a very tough challenge.
In general program, money forthese programs is just sort of
hard to come by, and it is verydifficult. I, you know, I spent

(44:10):
a lot of time in nursing homes,and I've seen beauty there that
is just tremendous. I've seenhuman beauty in people and
relationships that just knockyou off your feet. But I've also
seen a lot of loneliness,isolation and boredom, and it is
very, very hard to push back onthat I'm empathetic.

Yeah, that leads to failure to thrive. We
saw that easily, easily in thepandemic. That's what it you
know, I always repeat thisnumber, because 200,000
residents that shouldn't havedied during the pandemic died
from failure to thrive, andthat's from being isolated.
Isolation is a killer. It is.
It's one of anybody would be.

(44:50):
None of us want to be isolated.
That's why they put, you know,criminals and yeah,

Don Priess (44:56):
solitary confinement as the ultimate. That's the
ultimate torture. Her is putthem alone. And that's what
we're doing. Babies,

animals don't thrive. Nobody thrives.
Don't thrive by themselves. Imean, we living things, need
living things, right? It's true.
It's really true. So and itreally breaks my heart that, you
know, and it's why I'm do. We'redoing No Country for Old people
our documentary, because to hearyou say that there isn't enough
money to, you know, have theseprograms that are that are vital

(45:26):
to life, because they are life.
You know, life is not justgetting medicine and eating.
That is not the extent of alife. So so that, if you're
going to call yourself a nursinghome and not in a nursing
institution, then you need toprovide those kinds of an access

(45:50):
to that kind of of life, right?
That that that that portion oflife which is stimulation and
and, you know, happiness andart, all that stuff, so,
entertainment, recreation andso, and there is enough money
mark, there is enough money.
Definitely

out there. There's no question, you know. And I've,
and I've seen it, and I've seenit done really well, but it's,
it's often intermittent, right?
It's not as regular as it needsto be. It's not as structured as
it should be. It doesn't alwayshave the best leader leading it.
So, you know, it's tough to it'stough to make it work. One of
the projects that we funded atdementia spring is the day by
day project out of Columbus,Ohio, which essentially is a

(46:29):
silent disco dance artsengagement tool that they've
brought into assisted livingsand nursing homes. Now, pretty
much across Ohio. They've reallysucceeded. We funded them with a
grant three years ago, andthey've had a great, great run.
They got funding from a localcounty to put their innovations

(46:51):
into every single nursing homein the county. So in these
nursing homes, you have peoplewho are wearing silent disco
technology. One of the thingsthat's so important about silent
disco, I don't know if you guysare silent disco

. People tell it. Tell us what that is.

So the silent the so the silent discos are you've
seen. You might have seen theseat fundraisers or the benefits
or at parties. It's where it's ait's a dance. It's a club,
right? It's a disco. But insteadof hearing the music out in the
room, which is what you're usedto. When you walk into a room
for a disco, every single personis wearing headphones and the

(47:26):
music is playing only for them.

I've never heard of this. Okay,

it's very cool.
Teenagers know all about it. Anyteenagers who are watching your
podcast are rolling their eyesright now.

Okay, sorry. We

apologize. We apologize that we're catching up
to technology in the real world.
So thank you. Thank you forteaching us. We appreciate you.
We're grateful for you.

Yes, grateful for you. But

it's, it's great.
It does two or three things. Oneof the things is it makes the
room less loud and crazy, right?
Cacophonous because there's nomusic playing out anything. It
also lets different channels beprogrammed so that some people
in the room can be listening toa different song than the other
people in the room, but they'reall still dancing. It's
brilliant, which is brilliant.
So if you need to program some40s tunes versus some Beatles

(48:11):
tunes, right, you can do that,right? Some people like Frank,
some people like, you know, JohnLennon, so you know, so you can
have them in the same room. Ifyou knew their tastes, you could
give them headphones, and they'dhear their music, not what
everyone's hearing. Not everyonein the room is hearing the same
music. But what's most importantin my mind, from the medical
standpoint and the physiologystandpoint, is that a lot of the

(48:33):
problem for people withAlzheimer's disease on the
listening side, is that thestreams are always getting
crossed. Right? Think about aroom at a Christmas party,
there's too many voices. Thinkabout a time you went to a
restaurant. Sure, it's notnecessarily the volume, it's

(48:54):
that there's too many inputs,right? There's words coming from
over here, there's words comingfrom over there, there's there's
someone behind you talking, andyou and I have the ability to
mostly filter that out anddecide who we're going to pay
attention to. People withAlzheimer's don't have that
ability. They've lost theability to filter and to
prioritize, and so it all justbecomes this cacophonous stew of

(49:15):
sound that they're supposed torespond to. It's hard to know.
The beauty of the silent discois it isolates. That's the only
noise they hear. Is that song.

I love that so much. I

Don Priess (49:32):
love it so perfect,

so perfect. Even if you're in a room full of
people trying to sing songs, youknow an alarm is going off down
in bed. Number three, there's asiren outside, like there was in
your podcast. You know, there'sall kinds of noises. Someone's
over the loudspeaker. You know,we need somebody in room.
There's two and there's peoplenext to them making noise. But
with the with the headsets on,it's pure. It's pure. It's very

(49:55):
much like the image and videoyou've also. Scene of Music and
Memory. Those first, those firstpatients in the Music and Memory
program, where they put theheadphones on the person sitting
in the wheelchair, and theystarted

Alive inside alive.

So picture that writ large and just magnified
with a little piece oftechnology. It's great. And they
have a whole program that youcan you can sort of selectively
make a playlist for them. Youget to get to know about their
lives, get to know when theygrew up, get to know what music
they liked, program it in. Andthen you've got the whole place

(50:34):
dancing. They bring maracas,they bring Cha Chas, they bring
tambourines.

Video, I want to see video. And by the
way, I've danced with people innursing homes. I've danced with
them in wheelchairs. So whenthey want to move, they want to
dance with them. Yeah.

So that's it.
That's a great example. That's agreat example of project.

I love it so much.

Check it out. So

Don Priess (50:57):
how do we, how do we, you know, it feels like the
only way we get this into, youknow, wide out there, into all
the facilities and everything,is to somehow show how this is
going to either save or makethem money. That's, that's the
the only way. It's difficult,but it is difficult. Can you
show? I mean, I'm sure you canshow. Wait, if you do this, then

(51:19):
all of these costs go away thereor they, you know, they are,
they are, you know, it lookslike in the long run, this will
actually be beneficial to you asan organization. Can you do
that? Is it something you'retrying to do right now?

Well, I'm not focused on that particular
segment today. There is goodevidence for it. The trick is
you have to have somebody whoreally believes it and wants to
put it into play. You know, youneed leaders to believe that not
only will they have lessbehavioral disturbance, but
they'll use less medicines tocontrol those behavioral

(51:54):
disturbances, which is betterfor the patients, because we
know they come with black boxwarnings that you know they can
be dangerous, if not ifoverused, but they also can save
on that expense. Then also fromthe staffing side, the people
who are taking care of thoseloved ones in those facilities,
if the patients are having lessbehavioral problems and have

(52:15):
better moods and less anxietyand less depression, their job
becomes easier. So it actuallyhelps you around the entire sort
of horn of the entire facility.
It's really a cultural shift inmy mind that people need to
latch on to, which is to saythat we're going to be an
institution that delivers thearts in a big way, right? We're
going to we're going to hang ourhat on this, and we're going to

(52:35):
fund it, and we're going to doit right? It's just, it's hard
to find folks out there in thecommunity who are trying to run
their businesses, who will adoptthat writ large, right? It's
easier to go try to save moneyon a better toilet paper
contract than it is on artstherapy. And we're trying to
dispel the myth that it's overlycomplex or that you can't find
it anywhere. There's so muchgood programming happening all

(52:59):
around the country, actually, inlittle pockets. You just got to
find it and bring it in andwelcome it. It

Don Priess (53:07):
seems like the big step would be to the peak, to
the to the owners of theseinstitutions who are employing
this to talk to the other onesand saying, guess what, guys,
I'm doing this. Everyone'shappier, and I just saved, you
know, blank, amount of moneyevery month by using this
that's, that's the way it'sgoing to happen. Because, you

(53:28):
know, we can demand it, butuntil they hear from somebody
who's actually doing it,

and it's starting, yeah, it's starting to happen.
It's starting to percolate. Imean, that's part of why
dementia spring exists, right?
Which is to show that thesethings can happen, that they're
not incredibly expensive, andthat you can latch onto. I also
always feel like, if that's partof your story in your community,
people are really going to likethat in your community, right?
People are going to want to bepart of that, right? Your staff,

(53:54):
people are going to want to bepart of that. I always view
things through the lens of, howdo we retain our best people.
You make their environment towork in fun and lovely and
purposeful and meaningful, andyou pay them well, obviously, of
course, but you bring that in,and all of a sudden the place
that they're working becomesfundamentally transformed,

yeah, and can And absolutely, I think
what, what's important that alsoto piggyback on Don what he was
saying about show, you know,showing, like, quantifying what,
what arts actually do, in termsof, you know, from your
perspective, and because you aresuch an advocate for it, that
it's going to take you know, thecommunity at large, the

(54:37):
collective, to say to the peoplethat hold the purse strings,
which is cms. And you knowthat's me saying CMS. You're not
looking at what's important forthese quality of life, for
quality of life, we're not justtalking about quantity. We're
talking about quality. So Ithink that that's what we're
that's my goal, is to make thatshift. To educate what you're

(55:01):
doing educate everybody to say,Oh, of course, these people
deserve this kind of life. It'snot, we're not just keeping them
alive, you know, in a bed thatthey need a full, you know, full
scope of life and that. And thatcomes down to CMS, who writes
the checks to these facilities.
So CMS needs to step up and re,re evaluate what our priorities,

(55:23):
staffing one of them, payingpeople to want to work there in
and give them benefits and makethe environment, you know,
attractive, like you just said,to want to go to work, to look
forward to it, becauseconsistency, as you know, as a
doctor, consistency and care,you know, especially in

(55:45):
Alzheimer's and dementia, is isparamount, right?

Yes, yes. And CMS is actually recently taken a
really important step in tryingto address some of the needs of
patients and families dealingwith dementia, especially at
home, they've established a newmodel of care where they're
going to finally sort of pay forsome of the care management and
navigation type services that myorganization, Lizzie care, does,

(56:11):
and of course, in my practice,we've always done but CMS is
finally going to start payingfor folks who have expertise In
dementia and what the journeylooks like to counsel families
like yours over time. The truthis that today, you can go to
primary care a lot, but theydon't have all the resources to
help you on your dementiajourney. Right, right?

(56:34):
Neurologists also are veryhelpful, yes, but they don't
have all the tools necessary tohelp you on your dementia
journey. And the truth is, thereis expertise out there, but it
has often been underfunded, andthere's not a lot of there's not
a lot. I mean, there's no I'm ageriatrician. There's only 5000
of us in the entire country,

and it's getting less, from what I've
heard, people are gettinglovely. Yeah, I remember one
day. I remember one day adoctor, my mom, my stepdad was
having surgery. My mom was inthe throes of Alzheimer's, and
kept wanting to ask the doctor,as he walked by, how is George?
How is George? How? And hewalked up to me later on and
went, do you need, do you need aprescription to Valium? I'm just

(57:13):
asking to me. I don't know if itwas a joke or what, but it was
like it was, it reallyhighlighted the fact that he
clear, you know, he representeda part of our, you know,
community that doesn'tunderstand it, and that, you
know, we it's not going to goaway. If I take a Valium, it's
not going to change Mom, that's

right. So, you know, learning, learning how to
cope. You know, for so manyfamilies like you, you're,
you're at home, you're, you'reliving the journey. You're doing
the blocking and tackling, likeI said, but you're largely on
your own spending for yourselvesand trying to navigate the maze
of dementia care in our country.
And I fundamentally don't likethat. I think that needs to
change. And luckily, CMS has nowstarted to pay for some of those

(57:56):
services, not a ton, but it's agreat thing to start it is, it
is it's a new model of care.
It's called a value based caremodel, and it's like the work
that we do at Lizzie care, whichis trying to stay very close
with families like yours andsay, Where are you on the
journey? And how can we help youanticipate what's coming? How

(58:18):
can we help get ahead of thecrisis, before the crisis
happens. So you don't have to goto the emergency room and get
offered Valium, so you don'thave to have a so you don't have
so you don't have to placesomebody in a nursing home
quickly out of a crisis whereyou can't a lot of the things
that happen to people along thedementia journey are a little
bit predictable, actually. Andfor people like me who have

(58:39):
expertise in this, I can usuallysee those crises long before
they happen. And

so gem Mark, you're such a gem. So

now, you know, now we've, we've put together a
whole team at Lizzie care, whoessentially helps families just
by being tight with them for thejourney. And when we see that
something needs to change sothat we can avoid a crisis, or
we see that the world has shrunktoo much, and it's time to put a
companion in with your lovedone, or we see that it's time to
have a conversation about maybenot being at home anymore. Maybe

(59:09):
it's gotten a little toocomplex. Either way, you get the
benefit of, you know, expertise,patience, a trust factor that's
not always there when you're incrisis and people are poking
themselves in and out, trying tohelp you through the crisis. So
it's really great. I think CMSis kind of, you know, it's a
it's a innovation program, soit's called a pilot. But I think

(59:30):
they're beginning to tip toethemselves into the dementia
situation in America, seeing howmany people are dealing with it
today, and how the newmedications are going to put
pressure on CMS to help morethan they ever have before.
They've mostly left it tofamilies and to Medicaid to deal
with the reality is they'regoing to have to get a little
more proactive, and this programis designed to do that, so we're

(59:53):
pretty excited about

Don Priess (59:54):
it. And is this program? Is it A, available
everywhere and B, is there acost to it? How does that. All
work.

Marc Rothman (01:00:01):
So it's for people who have a diagnosis of
dementia. It's not availableeverywhere. You kind of have to
find those practices andorganizations that have gotten
themselves sort of certified andcredentialed in the program,
were called participants in theprogram. And as long as you can
find one of them, you can lookit up on the internet, on cms.
The program is called guide, G,U, I, d, e. It stands for

(01:00:25):
guiding some kind of improvedexperience and dementia. And you
can figure out if there areguide providers in your area and
see if you can get connected.
Some of them are already bigmedical centers. So the big
medical center that some peoplehave already started going to
right? Maybe there's a dementiaResearch Center at the
University. They might haveapplied for the guide model. So

(01:00:45):
they're probably already doingthe work for you, for families,
but at least now they get afunding source, and they can
expand their programming tobring on more coaches for
families to give coaching. Theycan bring on more care managers
to help navigate the journey andfind resources for you. Instead
of telling you to go findresources for yourself, they're
a little bit of a focus onmedication management, because

(01:01:07):
we know that in people withdementia, the risk of
polypharmacy, taking too manymedicines that are interacting
with each other is a big risk.
And there is some money actuallyset aside for respite services.
It's not a lot. It's not a lotper year. But you know, if
there's a weekend that someoneneeds to get away, or there's a

(01:01:27):
surgery that somebody needs togo to, there's an opportunity to
have Medicare pay for some ofthat respite service through the
model. The model just started afew months ago. Our organization
goes live on it in the spring,so it's, you know, it's going to
be a bit of a slow roll out, butit's coming. And it definitely
represents a, it represents a,an important step by Medicare,

(01:01:49):
in my mind, into all

Susie Singer Carter (01:01:50):
good shift.
That's really good to know.
That's very, very, that's verygood to know. Yeah, it's
encouraging because I've beensaying that, you know, for so
long, we've been saying, youknow, it's it, it we can't
control bad players that, youknow, we can't. So we have to,

(01:02:12):
we have to have to create it. Wehave to create how it has to be,
and then that, and then theyhave to back into it. So they
have to back into the way it is,so that we can avoid the kind
of, you know, lonely lives thatyou're talking about, you know,
very small lives that don't haveto be that small yet. So I think

(01:02:34):
you're an incredible human andappreciate you so much. I mean,
I, I'm, I'm so much moreimpressed with you. I had no
idea what to expect. And likeyou're, you have so much to
offer and so and your compassionis just beautiful. And, oh no,

(01:02:55):
I, I, it's very moving for me. Ijust love what you're doing. And
your Lizzy care is, is justawesome. I mean, it should be
everywhere. And how you supportthe arts is just, you know,
phenomenal, because it Americasucks about when it comes to
supporting the arts. You know,almost every other country has,

(01:03:17):
you know, all kinds of fundingearmarks for arts, and we have
zero, you know, we are on ourown. So you know it's God bless
you for doing this, for otherartists to get their beautiful
work out there. And you knowwe're all grateful to you. Thank

(01:03:37):
you. Thanks.

I appreciate that.
I'm grateful for you. What youguys are doing, I mean, you are
you're bridging the gap forpeople, and you're making
Alzheimer's, you know,understandable for people, and
you're sharing your story. Andthat's so much of what dementia
spring is trying to do, whetherit's you know, Sam Simon and his
play dementia man, where hetells you how he's grappling he
has a diagnosis of dementia, bythe way, he is performing one of

(01:04:01):
the only perform performers thatwe know of who has Alzheimer's
disease and is on stage on aregular basis. We're looking for
others. If you find others, letus know. But when I'm on the
phone with Sam, when I'm on thephone with Sam, he always says,
I might be the only one. I'm notsure.

You know, it's also like Greg O'Brien. You
know you're familiar with GregO'Brien that wrote on Mars and
and we go, I had the honor tointerview him on our show, and
he just blew me away, becausehe's been living with
Alzheimer's for a very longtime. His his cognitive reserve
is his journalistic acumen,right? And so I was like, how is

(01:04:39):
he remembering all this. But hesaid to me, Susie, I write
everything down immediately. Iwrite it all down and I just
think it these kinds of people.
You said, like, like, what ishis name? That do? It does the
one man show, Sam, Simon. Sam.
Simon, which I have to see thatshow. I've heard about it. And
Greg O'Brien, these are, theseare. Give gifts to all of us to

(01:05:01):
get inside what it's like to tolive in this journey. Live
underlined.

Yes, you know, one of the things that I also love
about the arts piece, I'llreference another organization.
We work with, Fauci Jimenez andthe what's the oye group in
Brooklyn. They have a projectcalled Mercedes, which we
latched on to. We love theMercedes project, and he's going
to be performing at the BrooklynAcademy of Music with the
Mercedes program, including somevirtual reality about living

(01:05:31):
with dementia, seeing thingsthrough Mercedes life. One of
the nice things about the arts,I find is that it really also
lets us reach other communitiesthat are harder to reach when
all you've got is sort of whitecoat, you know, institutional,
you know, universityprogramming. It reaches the
people who like that. But for alot of communities, whether it's

(01:05:53):
an immigrant community orHispanic community, or whether
it's, you know, think of amillion communities, yeah,
anything, the gay and lesbiancommunity, whatever it is, the
arts are a great way to get inthere and kind of meet them on
their own playing field, right,meet them where they are right,
and do that through the arts.
And so, you know, I just lovethe collaboration between a
physician and a poet to try tobring you know, story,

(01:06:16):
storytelling and resources. Sowe wrote, we wrote the resource
guide for the events that he'sdoing. We made sure it was both
in English and in Spanish, andreally down to the local level
for the communities that he'sin. Those are just beautiful
collaborations that I just, youknow, I feel like getting,
bringing, bringing, bringing upa little bit that I have to

(01:06:37):
share and know about the scienceand about the medical, medicine
and about the disease, combiningthat together with the creative
spirits and juices of all thepeople who want to tell these
stories, it's just been a verypowerful concoction. And you
know, I feel like I'm, I feellike I'm, I'm able to

(01:06:59):
communicate with a far biggeraudience and a far broader set
of people who need help than Iwould have been otherwise. And

I just want to say, just to add on to that,
is that when I thought aboutdoing my mom and the girl and
people had said, because I wouldtell the story at a party
because it has your mom, and Itell the story because it's all
true, right? They'd go, Oh, myGod, you need to do a short film
on that. And I'd say, Oh, Idon't know, there's so many
Alzheimer's who this is theworld needs, is another

(01:07:29):
Alzheimer's movie, right? And ashort who's gonna see it? Dada,
dada. And, you know, at the endof the day, I thought, you know,
I ruminated on I thought, it ispretty extraordinary, these
three disparate people from, youknow, LGBTQ and and, you know,
Latina and a Jewish mom fromfrom New Jersey, getting and

(01:07:51):
really affecting each other. Andso, Donald, yeah, Donald, tell
you like when we released it,and we were all over the world
at all these film festivals, andwe were blown away by how many
people it affected, fromteenagers to elders, and we just
screened it again at BelmontVillage, here in Los Angeles,

(01:08:12):
which is a assisted living, whatwith residents and their family
members, and the residents lovedit and were so engaged with the
conversation after and they saidthis needs to be shown every
year to everybody, because theybecause it made them feel okay,

yeah, yeah, you know. And

Don Priess (01:08:32):
it's, yeah, oh, go ahead. No, I was just gonna say
it's, it was when we did, wesaid, Who's this is so specific.
How is anyone gonna relate tothis. And what we found is that
specificity was the universallanguage that everyone can share
in, even though it's not exactlythe same. Yeah, it they everyone
got it. We were shocked. We hadno

I meant to say the button is, tell your
story. Don't think that it's notvaluable. Everybody's story is
valuable everybody's and themore stories we tell, the more
we will dilute the bias andright and the ages and the
ableism and all those thingsthat we have a really ingrained
in our in our in our public, inour society, that we can counter

(01:09:17):
it with storytelling

and get rid of the fear. And so the because the
fear of it is something thatthat everyone, whether you have
it or you you don't, lives with,and make it so less fearful. I
think that's and that's whatyou're doing.

You know, when I go back to the what we talked
about earlier, which is that Ithink we talked about it
earlier. I've had a lot ofmeetings today in conversations
today, but I thought we talkedabout it. So, you know, less
than half, or about half of thepeople who have early stage
dementia have a diagnosis today.
So that's that's not good, lessthan 10% of people who have mild

(01:09:54):
cognitive impairment, whichoften precedes dementia. And
for. Which you can now receivedrugs if you have a diagnosis.
Less than 10% of those peoplehave a diagnosis, but they are
experiencing the disease, andthe fact that they are sort of
not doing it publicly means thatthey are alone and they don't

(01:10:15):
get the chance to see themselvesin the arts and in on screen and
in dance and in music, and it'sand so when, when our leader
Hall in Chicago, who we gave agrant to, creates a comedy about
using improv to deal withdementia and laughter, you see

(01:10:36):
yourself when people like Samtalk about what it's like to get
a diagnosis and to go home andtell your wife about that, and
to decide whether to take a tripor not, or whether to even do
this play you see yourself init, even if you haven't
acknowledged the disease toyourself, or if no doctor has

(01:10:57):
told You that You have thediagnosis. So I often feel like
we talked about wheelchairs andnursing homes on one side of the
spectrum. On the other side ofthe spectrum is a partially
hidden, secret and almostunrecognized world of people who
have the symptoms but don't havethe diagnosis, but they are

(01:11:18):
experiencing it and they feel itinternally. So, you know, I
almost call this populationunderserved, right? Because
without the diagnoses, theycan't get the treatments.
Without the diagnoses, theycan't get the care managers and
the navigation help. And so howdo we find them? How do we bring

(01:11:39):
things to them, to solveproblems, and how do we show
them that other people havelived this journey before? And
how do we get them to be able tolook out and recognize
themselves in popular culture,whether that's a dance, a song,
you know, just all the all thesethings, and embrace it, you
would do so much for them. Butum, again, it's the artists who

(01:12:00):
have to do it, the doctor. Andalso,

I think that there's other films that
have been out there that that Ialso, you know, did a disservice
by being this is, and in thepast, not recently, I've said
there's been some that thatactually perpetuated fear. So
it'd be, you know, so it onlyshowed the negative side. I have
a big problem with that, and Idon't, yeah, and I've said that

(01:12:27):
so many times, and I'm veryunpopular when it comes to one
movie, because, and I'll say it,I don't care, Still Alice, I
think did a disservice. I don't,I know the people that did it,
and I'm sorry. I respect you,but, you know, when I've
swatched it, I was like, that'snot how it rolls out. It doesn't
that's wrong,

right? And you miss a lot of the doom and
gloom. We talk about this a lotin some of our panels that we
did a festival this past springin New York, and we had panels
we talked about this topic,right, which is the doom and
gloom narrative, right? Andpeople can't stand it. They find
it pervasive, and they call itthe tragedy narrative. But there

(01:13:08):
is laughter along the way, thereis joy, there is love, there is
sharing, there is silly trips,there are wacky moments, there's
dramatic moments. Sometimes,yeah, a lot of it's sort of a
very silent, you know, doom andgloom narrative. One of the
things that I try to do when wegive grants to folks, a lot of

(01:13:28):
them are in, you know, preproduction on whatever their
project is, whether it's danceor music or some I try to work
with them a little bit onavoiding cliche, because
otherwise you just sort of endup like, Oh, I'm going to make a
move about Alzheimer's Great.
I'll have the person get lost,and then I'll have the person
like, have the keys taken away,and then I'll have them leave
the stove on, and then I'll havethem, you know, I'll have, you

(01:13:50):
know, I'm just like, okay, butlike, what about the rest of
life? There are things between,yeah. So trying to get out of
the cliche, a little bitexploitative,

the exploitative side too, that I
found, I found that too when Iwas working with the Alzheimer's
Los Angeles here, because I wasworking with them very closely,
and they would say, you know,would you take a look at this
film? Because we want to think,should we get behind it? And
there was many films that,especially documentaries that
were very exploitive,exploitative of their family

(01:14:24):
member and to and it's really,you know, sort of, you know,
looking at the the accident onthe road, you know, just like,
here's horrible things thathappen, that they

focus and magnify the indignities. Yeah, they
focus and magnify theindignities. And, you know to
show, oh, when you have this,you have no more dignity. And

it hurts my soul to watch those things. So I
would say no, no to certainthings like that. Because I said
no, I don't want thatperpetuated by the way people
that have cancer, people thathave you know, MS, all, we all
suffer in dignities, but thoseare private. We don't need to
share those. Yes, that's, youknow, that's not for that. That
doesn't make or break you as ahuman being, and doesn't define

(01:15:06):
you as a human being, right? Doyou agree? Yeah,

it's very we talk about this a lot, too. When I
get artists together and we dopanel discussions about this, is
sort of, what is the properamount of exposure to
essentially decide that someonewith memory loss, who may not be
able to decide for themselveswhether they want that level of
exposure, how much isappropriate to do or not do. I

(01:15:30):
think, I think before socialmedia, there was a lot of
thoughtful conversation aboutthis, right? I think people
really wrestled with whether itwas okay to take photographs. I
mean, you know, I've got, I'vegot many photo photographers,
and we work with the Bob andDiane fund. Oh, yeah. People

(01:15:50):
take photographs of people withdementia, which I think is fine.
And sometimes those photographsare very personal and but
sometimes they are showing howpersonal a journey it is, and I
appreciate that, but that personmay not have given consent. They
gave passive consent. Theyobviously love you, and they've

(01:16:11):
probably watched you be aphotographer your whole life,
and you've probably beenphotographing them your whole
life, but they didn't givepermission for you to publish
it, and, you know, put it outthere, but they trusted you for
everything, and you've made thedecision to do it, to
communicate something, tocollaborate. A lot of artists,
when they talk to me about usingthe subject, the person with

(01:16:35):
dementia, as the subject, theytalk about as a collaboration
from the artistic side, likeI've had artists say to me when
my mom and I were they wouldsay, my mom and I collaborated
on that project. And I rememberthe day the collaboration was
born, something happened. Therewas a magic and they said that
was the collaboration, and I'vechosen to share that with the

(01:16:55):
world, even though it shows momin some compromising situations
that you and I might not reallywant to share. I think there was
a lot of thoughtful discussionabout this, and what are the
limits to that, and how far youcan push it or not push it every
conversation with social media,it's tough, right? I mean, you
know, the world is so permissiveabout imagery now that you know,

(01:17:20):
most of us with phones aregenerating at least five or six
pictures a day on something,whether that's the sunset on the
ride home, or a selfie with yourcousin or, you know, the I got
something leaking from theheating duck, I photographed it
and sent it to my wife like, youknow, it's just everyone's
taking pictures of everythingnow. And I don't know what the
right balance is, but I agreewith you in situations where it

(01:17:41):
seems oddly exploitative oroddly just embarrassing to a
extent that was unnecessary. Idon't know that that. I don't
know that that act robs them ofdig one. When I talk about
dignity, I'm usually talkingabout, how do we preserve
someone's dignity, personallyamongst us, right? How do, how
does the day to day for thisperson feel? How do their

(01:18:04):
experiences feel minute tominute? I'm a little when I talk
about dignity, I'm not so muchtalking about whether or not
their underwear got put onsocial media or not, you know,
but it's an issue. It's a hardissue, and it's been made more
complicated now by the ease withwhich people can create imagery
and stick it wherever they want.
I

think that when, when there's no, yeah, when
there's no takeaway from it,meaning that, here's the
indignity and all your it's justto show how bad it is, that's
it. There's no There's nolesson, there's no knowledge,
there's no you don't takeanything away from it. If you
can then take that indignity andsay, okay, and learn something
from it, or enlightened, then Ithink that's where the

(01:18:47):
conversation hopefully would goto, you know, as opposed to
just, this is bad. Look howterrible this is. Yeah, it

becomes, it's, it's like, click fade, or
it's like, you know, any movie,if it's, if you're gonna do a
sex scene in a movie, is it,does it serve the story, or is
it just porn? You know? Are wejust like, You know what I mean?
Does it serve the story to tohave this love making in which
often it does, but oftentimesyou're like, Okay, we got it.
They're making love. We get it.
We know how to do this, youknow? And it's like, not that

(01:19:17):
I'm a prude. I'm not. It's justthat, you know, I don't really
care, you know. And also, to seesomebody you know in a
compromised situation whenthey're when they have
Alzheimer's, you know, maybewith their hygiene, or whatever
this case may be, you don't needto focus on it that long people
will get it. And so it becomes,that's when I those are things

(01:19:37):
that I think do want, you know,really deserve a conversation,
and we should keep that going.
Because I, you know, look at,I'm doing a documentary based on
nursing home, you know, abuseand neglect, and I, and I have
to be very considerate about howwe present it, and in the. Is a

(01:20:00):
fine line. So, yeah, anyway,this has been great. We're
talking forever. I told youguys, thank you, yeah, yeah,
wow. So okay, well, reallyappreciate you and love what
you're doing. We are all aboutlove. We we are we're doing this
because we care and love, andthat's the only reason why we're
doing this,

and that's because love is powerful, love is
contagious, and love conquersall. We thank everybody for
watching listening today,please, we'll put up all of Dr
Mark's information abouteverything that he's doing, and
please like us and subscribe anddo all those fun things, and
we'll be seeing you next time.

Yeah, everyone, be good. Have fun and
be grateful

Absolutely you guys.
Take care. Everyone

having us, bye, bye.

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DR. MARC ROTHMAN: Transforming Caregiving and the Perception of Dementia Through the Arts

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