September 12, 2023 • 35 mins
Join us for an enlightening conversation with Dr. Daniel R. George and Dr. Peter J. Whitehouse, authors of the groundbreaking book "American Dementia: Brain Health in an Unhealthy Society". We’ll delve into the surprising revelation that dementia rates in the US are declining, thanks to a series of public health interventions. From vascular health to access to higher education, we’ll journey through the spectrum of factors that contribute to brain health.
Be prepared to rethink your perspective on dementia as we explore transformative concepts of dementia-friendly communities, the role of memory products, and the harmful effects of labeling older people with terms like Alzheimer's. Our discussion with Dr. George and Dr. Whitehouse will shed light on the need for a more personalized and community-centered approach to dealing with these multifaceted issues. We'll also discuss the new payment model released by CMS to enhance dementia care and its potential to foster better-coordinated care and access for underserved populations.
Our conversation doesn't end there. We’ll tap into the power of arts, nature, and relationships to enhance the lives of those living with dementia. We'll highlight the importance of staying engaged with the American Dementia community and how purpose, play, and relationships can make a significant difference. Get ready to be inspired and informed as we delve into this complex and essential topic.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jennifer (00:09):
Greetings.
I'm Jennifer Kennedy, the leadfor Quality at CHAP, and welcome
to this month's CHAPcast.
I'm really happy to welcome DrDaniel R George and Dr Peter J
Whitehouse, who are the authorsof the book American Dementia
Brain Health in an UnhealthySociety.
Welcome, danny and Peter, andcongrats on the book.
Danny (00:32):
Thank you, jennifer, glad to be here.
Peter (00:34):
Thank you, Jennifer.
Jennifer (00:35):
Well, you know, let's just go ahead and start with
talking about.
You know some of the thingsthat you brought to the book
about.
You know, what really grabbedme at first was dementia is
going down, and you know whenyou look at data out there, like
, for instance, cms quotes that6.7 million Americans have some
(00:58):
sort of dementia in 2023, andtheir projection is 14 million
projected cases by 2060.
So when you read a book thatsays you know, over the time
span that you looked at it,dementia rates are going down,
as a clinician myself, I'm alittle perplexed.
Can you sort of lay that outfor me, danny?
Danny (01:19):
Yeah, absolutely, it's a bit counterintuitive because, as
you say, the you know, the sortof messaging that we get in the
culture is that you knowthere's a tidal wave of dementia
coming and we really have tobrace for the cost of that, and
you know the sort of tsunami ofAlzheimer's that we're going to
see.
And that's a great way ofraising funds, of keeping
attention focused on aparticular issue, and in fact,
(01:42):
the absolute cases of dementiaare growing because the
population is getting larger.
However, the nuance here isthat the relative risk of
developing dementia appears tobe declining quite significantly
over the last 30 years, notjust in the United States but in
other Western Europeancountries.
And you know it's a verycomplicated story that we could
(02:03):
get into, but just to boil itdown to the most simple parts,
it appears to be linked to a fewthings that we've done really
well over the 20th century,which is better treat vascular
risk factors, reducing smokingrates, keeping hypertension and
diabetes and things of thatnature in check in a better way.
(02:25):
The heart is intimatelyconnected to the head, to the
brain, and so anything thatwe've done that's helped
vascular health has probablyhelped brain aging.
We also have increasededucation significantly
throughout the 20th century,with things like the GI Bill or
the expansion of stateuniversities, pell Grants,
(02:46):
things of that nature.
Giving more people access tohigher education, appears to
have improved cognitive reserve,this ability that people tend
to have to be resistant to thepathologies of brain aging
without showing clinicalsymptoms of it, and also, of
course, lastly, getting led outof gasoline, which we did in the
1970s.
In the United States, bloodlead levels reduced
(03:09):
significantly from the 70s tothe 90s.
We, unfortunately, are nowdealing with a problem of lead
in the drinking water, but itappears that getting led out of
gasoline was another means ofreducing risk for dementia that
we're now seeing now for peoplewho are getting older.
Jennifer (03:25):
So I'm hearing you say a lot of like environmental
things have had a huge impact onsending that rate downward.
Is that fair to say?
Danny (03:37):
That's right.
I think it's really a publichealth success story, even
though we tend to think of thequote unquote fight against
dementia as a biomedical problemto be solved pharmacologically,
and the irony is, of course,that we have had about 100% fail
rate of anti-alzheimer's drugs.
It's been a real difficult pathand yet we are seeing these
(04:00):
benefits at the public healthlevel due to interventions,
state interventions, stateinvestments, state regulatory
successes with things like lead,and so I think there's an
important lesson there aboutwhat actually moves the needle
in terms of public health andwhere should we be putting not
just our resources but our hope.
Jennifer (04:20):
So we're really talking about changing things
way upstream, right, wayupstream, before people even get
to being in that bracket ofolder adult right that we need
some of this change becausethere are variables that impact
your health, and I think that tome, that just makes logical
(04:41):
sense.
Peter (04:44):
Well, the trouble with it .
You started your comment,Jennifer, by saying that
dementia is going down, but Ithink what Danny is saying, that
the lessons we've learned aboutpublic health and education and
quality of clean water and airwe have forgotten.
This is the American dementia.
Everybody wants to make a buck.
(05:05):
We're all out for each other asindividuals and not as
communities.
So we hope that we can tellthis story in American dementia,
brain health and an unhealthysociety, that it really depends,
as you say upstream, on thevery nature of our society.
You know maternal care andinfant mortality.
This is an intergenerationalissue and keeping your brain
(05:27):
healthy is the same as keepingyour body healthy, and we've
just got to do more of that froma public health perspective, in
our view.
Jennifer (05:35):
I agree I don't want to get into the whole public
health and what is happening aswe just come out of a COVID-19
pandemic, but I really dobelieve that public health has a
key piece here to play.
Another aspect of the book thatreally impacted me, as I
(05:55):
basically spent the majority ofmy career out in the community
doing that kind of nursing, isgoing to that holistic look,
making it.
All the variables that impact aperson, you know, be them
social, be them environmental,be them medical, to really get a
picture of that person in orderto figure out what's the best,
(06:20):
you know, what's the best thatwe can do for them.
And there's no better way thangoing to visit somebody in their
home to figure that out.
You know, I think for me I lovethat space because I do get to
see them, you know, in situ, inreal life, and that's where you
figure out, well, what'srealistic for me to do and what
(06:42):
are these other things thatother clinicians in a hospital
setting don't realize about thisperson.
Peter (06:51):
That's absolutely wonderful.
It's a statement about theimportance of nursing, because
you do take thisbio-psycho-social model out into
communities and that's whatpeople need.
People want to age in place,they want to find things to keep
themselves in their own homeand, fortunately, slowly.
(07:14):
One of the things we'relearning, I think, in the
long-term care business andindustry is that we shouldn't be
necessarily supporting justinstitutional long-term care,
but we should be providingresources to provide the
opportunity for people to stayin their homes, and nurses and
community visits are such animportant part of that.
Jennifer (07:35):
Kudos to that.
I would love to see moresupport to keep people where
they want to be at home Dan goahead.
Danny (07:43):
Yeah, I was just going to layer onto that to what you
both are saying.
Just in the 90s we had thisrevolution of person-centered
care that Tom Kittwood andothers helped lead, really
trying to see the whole personrather than the disease and
embed them in meaningful socialrelations.
That has evolved more recentlyto sort of relationship-centered
care and now community-centeredcare.
(08:03):
We have this movement afootcalled Dementia Friendly America
trying to think about how canwe make communities more
dementia-friendly, how can wedissolve boundaries that wall
off people with these diagnosesof mild cognitive impairment or
dementia or Alzheimer's from therest of society, when we know
that loneliness is a majorproblem, where we know that loss
(08:24):
of social bonds is a majorproblem, where we know that
getting detached from yourrelationships can upregulate
stress and be unhealthy forpeople?
How do we get back to a senseof community-based care?
And there are a lot of thingshappening, sometimes opening
their doors to people withdementia and their caregivers
(08:45):
Organizations like we can talkabout Peter's Intergenerational
School in Cleveland, which is aremarkable example of this.
How do you invite people withdementia diagnoses into serve as
reading mentors or mentors tolearn alongside elementary
school students?
But it's going to take somecreative thinking about how do
we currently treat our eldersand how do we currently position
(09:06):
them in the culture and how canwe sort of reverse engineer
some of the stigmatization andsegregation that we do with the
cognitively frail.
Jennifer (09:15):
Absolutely, and I know that ties into you.
Were talking in your book aboutage-friendly communities, the
WHO initiative, so you see allthat dovetailing into
age-friendly communities.
Peter (09:31):
Yeah, we are a big supporter of dementia-friendly
America, dementia-friendlycommunities.
I might mention anothermovement we've been involved in
reimagining dementia, becausethis is all about thinking about
people with that labeldifferently the stigma, as Dan
said.
The thing I would say assomebody who's developed these
(09:54):
intergenerational schools is weneed kid-friendly communities,
we need age-friendly communities, we need dementia-friendly
communities, we neednature-friendly communities.
So I wouldn't do communitydevelopment disease by disease
or age by age.
We really need to create morelivable communities for all of
us.
Jennifer (10:11):
I wholeheartedly agree and I hope we can see that
moving forward.
You know, all you have to do isturn on the TV and you have all
of these ads about you know,improve your brain health, do
crosswords, do Sudoku here, takeNoreva.
You know all these differentthings to you.
(10:31):
Know, keep your brain at itsbest working capacity for
whatever age you are.
What are your thoughts aboutsome of that stuff?
Danny (10:41):
Yeah, I think HG Wells said advertising is legalized
lying, and that's a lot of whatyou find in this.
What we call marketplace ofmemory products, which is a
multi-billion dollar industry,has largely targeted its
products to baby boomers overthe last few decades, but
increasingly is targeting themto millennials and zoomers in
(11:03):
terms of brain enhancement andspeeding up your cognitive
capacities and things of thatnature.
And they do meta-analyses of thedata for things like brain
fitness apps or video games ornutraceuticals or things of that
nature, all of which getmarketed to people aggressively.
The data is not very strong andI think it boils down to what
(11:25):
we were talking to just a fewminutes ago about drugs and
putting all of our faith insingle mechanism cures or
solutions to a very complexproblem.
And we can talk a little bitabout the nature of Alzheimer's
disease, but it's a syndromethat is intimately age related,
and so the idea of throwing onebrain fitness product at the
(11:45):
problem or one drug at theproblem is just sort of, on its
face, a bit reductive in its inits thinking.
So, as Peter saying, weencourage people to think in a
multifaceted, person centered,community centered way about
what it means to have quality oflife with dementia, what it
means to stay vital as a personwho may have some memory
challenges, as we all have.
(12:05):
We're not going to find theanswer in a market.
Jennifer (12:08):
Yeah, you know what, I hear you, danny.
But when you look at howhealthcare is set up let's take
CMS, for instance you have to.
I hate to throw us into thatICD-10 code thing, but someone
comes into the hospital and theyhave to have a primary
diagnosis, right?
Or for me, you know what's theterminal diagnosis, and then you
(12:32):
can have comorbidities go withit, right, that's fine.
But I think that clinicians aretrained to what's the one right
, what's the top dog right, andsome of those comorbidities
aren't necessarily considered asa syndrome or a confluence of
(12:53):
different diagnoses, that whenyou put them all together, we
have a different picture than ifyou just say, oh, this person
has dementia, and that this isthe picture.
I think our healthcare systemhas trained clinicians to think
in those kind of capacities dueto payment.
That's what we're talking about.
Peter (13:16):
Yes.
So, as a physician whose workwith CMS databases, we've
already seen an evolution of theterminology as our
understanding has increased.
They used to havearterioscarotic dementia or
heartening of the arteries, andwe're in the wave of a new
(13:36):
change.
That's challenging labels likeAlzheimer's.
Alzheimer's, as Danny said, isnot one thing.
There are multiple conditionsunder that, and when you get to
be an older person I can speakfrom personal experience and
there's a doctor taking care ofolder people you know that the
specific diagnoses are notalways as important.
(13:58):
There are lots of them, but thefact is it's the function, it's
what can you do to improvequality of life.
And sometimes labels likeAlzheimer's disease do more
damage than good.
And this label mild cognitiveimpairment and subjective
cognitive decline.
These are other labels that I'mjust throwing out that are in
this space of people trying tomake every older person sick,
(14:20):
and I'm going to make astatement here which is perhaps
a little provocative.
Unfortunately, the Alzheimer'sAssociation does a lot to
promote this kind of labelingand this kind of fear that Danny
mentioned about how many peopleare going to be affected over
what time period.
The fact is, as Danny said,we're all aging.
Our cognitive abilities change.
(14:41):
The question is, with whateveraging gives us, how can we be
personally responsible to takecare of ourselves as best we can
, taking our medicines orexercising and so on, but also
how can we work together tocreate communities that keep
people out in the community andout of those hospitals where
(15:01):
more damage can be done to olderpeople than good sometimes?
Jennifer (15:05):
Right, I completely agree.
You know, I think it isimportant.
I hear what you're saying and,having worked with a lot of
families over the years, theyhear one thing Maybe that's your
experience, peter but they hearone thing oh, mom has dementia
and that's what's going to takeher.
But then we say, well, mom hasdementia and she has high blood
(15:28):
pressure and she has diabetes.
So all of those things cometogether to bring whatever
outcome they do.
When I look at people, justbecause I have street cred as a
hospice nurse, it's like whatcontributes to the terminal
prognosis.
So I think let's take theterminal word away from that.
(15:50):
What is the person's prognosisif they have a handful of
chronic illness and dementia hasto be one of them?
Peter (15:58):
Yes, absolutely.
And since you've mentionedhospice, I think that's a very
important benefit we have inthis country because we all have
that.
This is an old joke, but I meanwe all have a terminal illness,
we all die, something theAmericans particularly want to
avoid, but the quality of deathand the quality of life become
(16:23):
intimately linked.
Once again, it's not hospicenecessarily bringing somebody
into the hospital or into ahospice facility, unless if they
want something, need somethinglike pain control.
But so much of that can be donein the home keeping somebody in
community doing the kinds ofthings that have made them human
their entire lives and keepthem human until their last
(16:44):
breath.
Jennifer (16:45):
Absolutely.
I couldn't agree with you more.
Another thing that stood out inthe book and I have a vested
interest in is health equity,and I thought you did great
coverage on health equity and,danny, you talked about in a
podcast I listened to recentlyand you all talked about things
(17:09):
like poverty and lack ofeducation and oh my gosh, lead
in water.
All of those things have animpact on not only brain health
but all health, all kinds ofhealth, whether you're a
pulmonologist or whether you'rea neurologist.
All of those things have animpact.
(17:31):
I'll talk a little more aboutthat.
Danny (17:34):
Yeah, absolutely.
That's a key part of the story.
I think Mentioned the conceptearlier of cognitive reserve,
which is this finding that forpeople who have more years of
education or who challenge theirbrains over the course of their
life by learning, by travelingand things of that nature, you
can sort of stave off dementialater in life.
(17:55):
Maybe your brain isstructurally or functionally
able to just be resilient tothose aspects of brain aging.
And, of course, if you'reimpoverished, if you're somebody
who is exposed to lead in yourenvironment as a child, if
you're somebody who has lesscapacity to exercise over the
course of your life, if you'resomebody who has less nutrition
(18:18):
over the life course and on downevery risk factor for dementia,
you know you're going to be athigher proportionate risk later
in your life.
And we have a chapter in thebook specifically about Flint
and you know who is mostaffected by the Flint crisis.
It's the poor people, mostlyblack population living in the
inner city of Flint and if yougo to any municipality in the
(18:39):
United States there's going tobe lead in the water.
The people who are subjected tothat are largely folks in lower
income brackets right, largelypeople of color, and so those
people are going to havediminished cognitive reserve
later on in their life, and sothe threshold for converting to
dementia is just going to beless for them.
And so we really do have tothink not just about cognitive
(19:03):
reserve, but what Peter and Ipromote in the book is a sense
of population reserve.
How can we as a societycollectively make investments
across the whole culture, thingslike the GI Bill and the Clean
Air Act getting led out ofdrinking water or led out of
gasoline in the 70s?
How can we make those kinds ofinvestments that scale across
the whole population, instead ofbeing like boutique products in
(19:26):
a marketplace of memory thatthe wealthy have access to right
?
And so we really do need tothink about dementia not just as
an individual illness, but atthe population level.
And how can we organize andcollectively invest to reduce
risk for everybody?
Jennifer (19:44):
So let's say I live in an underserved community and I
don't have great access tohealthcare.
I have lead in my water and Imight be trying to do all the
right things that I can eatingthe best that I can, exercising
the best that I can but thereare it sounds like there's
factors out of my control.
Peter (20:04):
That's right.
Then the role of the person asa citizen becomes important,
because our title is brainhealth in an unhealthy society.
Society is all of ourresponsibilities and you don't
want to put more burden on thosethat already have a lot of
burdens.
But, as Danny was saying andsimply put, it's income inequity
(20:26):
, it's the inequity that comesfrom a neoliberal, that's a
market fundamentalism, which isthe huge, the greatest problem
in the world.
It's not just America, that'sto say, the very richer getting
richer and the poorer gettingpoorer.
When you talked earlier aboutupstream, jennifer, that's
exactly what we're talking about.
(20:46):
We need to take action togetherto change our entire
civilization.
We often say Alzheimer's ismore important than Alzheimer's.
Why?
Because if you rethink whatwe're doing about Alzheimer's,
which is focusing on the medicalside and the research side and
don't focus on where we all livetogether, which is a society
(21:11):
that unfortunately has itsAmerican dementia, we are not in
a world of sustainablebehaviors.
And I will say another plugwhich comes out we've talked
about environment.
The climate crisis is all ofour problems.
I say the greatest threat topeople with dementia is the
climate crisis, because peoplewho have a dementia can't get
(21:34):
away from droughts and floods.
They get dehydrated, as you allknow, jennifer.
So that's another huge upstreamsocial issue we've got to work
on together that dementia bringsa magnifying lens to.
But it is not a problem of justdementia, it's a problem of our
entire society.
Jennifer (21:51):
Well, I live close to Washington.
Maybe I should take a big stickdown there and get them on the
run from doing some betterpolicymaking.
I don't know if I could do thatmyself, but CMS recently put
out it's a payment innovationmodel and it's specifically for
(22:16):
individuals diagnosed withdementia.
It's the first I've really everseen them do anything that was
disease specific and I quotedearlier to you their data that
they're showing and theirprojections, so they're testing
the waters with this model thatreally just taught.
(22:37):
The model is talking aboutdoing good coordinated care,
particularly paying attention tounderserved populations, making
sure they have access and havea hand holder through their
medical care.
It also is looking at whetherthe social factors that impact
(22:59):
this individual and hey, here'ssome support for your caregiver.
Just me describing this, and Iknow we gave you a little look
behind the curtain with the CMSfact sheet what is that dovetail
in with your thoughts aboutwhere America needs to go in
(23:21):
terms of doing better with brainhealth and keeping that
dementia rate going downward?
Peter (23:31):
Certainly I celebrate that CMS is paying attention to
this issue.
They tend to neglect long-termcare and those kinds of issues
in general.
I mean, the big problem withthat is who's going to provide
that care, and you know,community health workers and
people who are out in thecommunity just are not
adequately reimbursed and paid.
So we're not going to have acaring society until we pay the
(23:53):
people who provide care more,and in that little graphic the
person and it appears to be aman who is helping them, and
then the CMS model has a whitecoat and a stethoscope on, and
so I.
There is a community workerthere involved as well.
But CMS has got to somehowfigure out what you were talking
(24:15):
about before.
It's not all doctors who needto get paid, it's not all
diagnoses, it's people thatactually can provide the
hands-on care in community.
So that worried me a little bit, because we don't need more
high-paid doctors.
We need more better-paid socialworkers, nurses and community
aides community workers, in myview.
Danny (24:36):
And on that note, we should probably thank you,
jennifer, and your listeners,for the work that you do on the
ground, because it is vital andimportant work, and we,
unfortunately, are in a culturethat focuses disproportionately
on cure and the biomedicalapproaches to these problems.
But what we do try to shine thelight on is this focus on care
as being primary and the focuson prevention as being primary,
(24:57):
even though those aren't asmonetizable as the cure path.
But that's where our humanityis right, that's where our
collective responsibility is,that's where our values together
can be manifest most clearly.
So just want to thank you allfor doing the work that you do.
Jennifer (25:16):
Thank you, and you know what I agree with you,
Peter.
I think this is a first boatfloat in the water.
You know it's a demo, it's ademonstration project.
Hopefully there'll have enoughapplicants that will want to dip
their toe in that water and seewhat it's about, and hopefully
(25:36):
the outcome will be that therewould be good data on the
backside in terms of payment, interms of structure, all of
those things where a betterprogram could be built.
But I applaud them for evenputting it out there.
This is pretty big for them todo that.
(25:56):
With my years of experience and, Peter, probably you have a
wealth of experience interfacingwith CMS as well- Well, I think
you're right.
Peter (26:08):
I mean, CMS has billions of dollars in their innovation
fund.
They're just so huge and Ithink we can look with hope to
the pace.
The program for all inclusivecare for the elderly, which did
start just as the way this guideis program is starting and then
eventually became ademonstration and then
eventually became reimbursableservices and for those of I'm
(26:33):
sure most of your readers knowabout it, but basically it is
centered around communityservices.
The idea is to try to keeppeople in their homes and in
daycare and in the community.
So, yes, absolutely.
Cms tends to focus on where theyspend a lot of money, so
they've been spending a lot oftime trying to keep people out
(26:54):
of emergency rooms.
Well, that's not a bad thingtoo, because as a doctor taking
care of people out in thecommunity, the last thing I
wanted to do with a patient withdementia or an older person in
general was to take them intothe hospital environment.
So, the more that CMS and themore that the long-term care
industry can keep people out ofhospitals and nursing homes and
(27:16):
in the community, let's see moreinnovation in that space.
Jennifer, I can't agree withyou more.
Jennifer (27:22):
Absolutely.
You know, my experience hasbeen that we have patients who,
with a dementia ICD-10 diagnosis, come to hospice and then they
get a little bit of TLC, goodsupport, interdisciplinary care,
and guess what happens?
They plateau right.
Medicare benefit tells us wehave to discharge them back out
(27:46):
because they're no longerterminally ill, you know.
So I'm hoping maybe thisdemonstration, with that
interdisciplinary approach, somebuild-in for the caregiver, you
know, will help where it'sneeded in terms of dementia.
All right, so I'm going toclose out with a last question
(28:10):
for you both, and that is whatare your thoughts on how
providers can enhance quality ofcare for patients with dementia
?
We know that in all areas ofthe care continuum in America,
clinicians are seeing patientswith dementia.
How can we enhance quality ofcare for those individuals?
Danny (28:36):
Well, peter is a clinician, so I definitely will
want to hand off to him on this.
But I can just push a conceptthat we talk about in the book
sort of tongue-in-cheek but in aserious way, which is social
pseudicles.
So this is obviously a conceptthat is juxtaposed with
pharmaceuticals, which, again,have not been very effective at
all in dementia care.
But what we do know works is afocus on purpose and play and
(29:02):
relationships, and there arethings like bringing music into
dementia care settings, bringingintergenerational relationships
into dementia care settings.
I have my medical students docreative storytelling project
called time slips, which engagesthe imagination of people with
dementia.
Opening minds to art is anotherway of using visual arts to
(29:26):
empower people with dementia tobe expressive through artwork.
There are a lot of differentways where we can use the arts
that connect to somethingquintessentially human in
somebody who may have memorychallenges and create
relationships around them, andexposure to green space is
another very important one thathas been has increasing data
(29:48):
around it.
So how can we think creativelyabout improving quality of life,
creating relationships aroundpeople with dementia, using the
arts, using the resources inlocal communities?
That would be where I wouldsuggest we spend some
imaginative time.
Peter (30:05):
So I actually think it's interesting that Danny answered
that question, because heanswered it in a non-medical way
, which I think is the way Iwould answer it too.
The way to improve quality ofcare is not to think of it as a
medical problem, to think of itas an issue around a person
trying to live in community.
That said, I would say onething that you should do is to
(30:26):
be nice to young people, so I'mhoping that Danny will provide
some care to me as I get olderand will notice when I become a
little unable to remember how Icalled him, dave or Dan.
It's Danny, I got it right thistime.
The other thing is yes, I writeprescriptions for dance
literally.
So that's a sociosutical.
I can't say the word either,but the idea that it needs to be
(30:52):
.
Now I should say it has to bebased on the interest profile of
the person.
If they have not been a dancer,okay, well, maybe you can pick
something else, but everybodyloves music to one degree or
another.
So music, dance, socialization,which dance gives you,
storytelling, which dance givesyou.
(31:13):
So I picked dance because it'san artistic combination of lots
of embodied things, includingrelationships.
So, yes, so this is absolutelyhow you improve the quality of
care.
And the other part of this, ofcourse, is that for as long as
we've been a species, it's beenthe family that have cared for
(31:35):
people with dementia.
So informal care and formalcare sometimes really can't be
separated entirely.
It's supporting the caregivers,giving them time and educating
them.
And I'm going to end with aquick story, because if they
listen to all the hype from theAlzheimer's Association and they
(31:58):
only think of it as being acaregiver burden, I sometimes
say you create a patient, thenyou create a burden.
Caregiver Caregiving can bejoyful, it can be difficult, but
it's also a part of life and sothe idea that we should.
For example, I was working withfolks where a woman was crying
(32:19):
frequently and it became veryclear she had a condition that
I'll use the medical term for, apseudo-ball-bar affect, which
meant she just couldn't controlher emotions.
So the idea was to tell thecaregiver not to drug her but to
say look, she's got a littlebit of emotional dysregulation.
It doesn't mean she's sad, itdoesn't mean every time she
cries she's unhappy.
(32:41):
Know that that's just somethingthat happens and you can adapt
to it by being supportive butnot going overboard with regards
to, for example, as I said,giving medications, which is
something that often happens.
So just understanding the rangeand variability, what can
happen, and that's personalizedmedicine, it's learning the
(33:05):
story of the caregiver and theperson and giving them
information that's helpful tothem, the response to the
particular symptoms andinterests that that couple or
that family has had beforedementia occurred.
Jennifer (33:18):
The individual care plan.
It's a beautiful thing.
I love it.
Well, thank you so much, dannyand Peter, for joining our
CHUPcast today to talk aboutyour unique and innovative look
at dementia in the US today.
Any final thoughts for ourlisteners?
Peter (33:42):
I think an overarching theme is a person with the label
of dementia or Alzheimer's isfirst and foremost a person.
But to take away that humanitybecause they have that label,
and engage with them as youwould with anybody, recognizing
that we all have our strengthsand weaknesses as we get older,
(34:05):
so bring forth the humanity anddiminish a bit the exclusive
focus on making it all medical.
Jennifer (34:13):
Thanks, peter, that's great, danny.
Danny (34:16):
So yeah, just in closing, I'd like to say you know, let's
keep the pressure on ourpoliticians and our institutions
to actually serve people andtruly bring about equity and
equality in the country.
And you know, to connect withwhat Jennifer said earlier, we
should all speak softly andcarry a big stick and let's keep
that pressure on Washington.
And just to add on to that, youknow people can continue the
(34:39):
conversation with us.
We have a website,AmericanDementiacom.
We're also on Facebook.
People can find us at the Mythof Alzheimer's, which was our
first book.
We have a community there thatwe share articles with.
From time to time.
People can engage in an ongoingdialogue about these issues
with us there.
So, yeah, please just stay intouch with us, and we appreciate
everybody's interest.
Jennifer (35:00):
Well, thanks to all of you for taking time out of your
day to join our podcast.
Hopefully you took away a lotof pearls of wisdom.
I know that I did aboutdementia and a different way to
look at it.
So, from Chap and myself,thanks for all you do and be
safe and well.
Greetings.
I'm Jennifer Kennedy, the leadfor Quality at CHAP, and welcome
to this month's CHAPcast.
I'm really happy to welcome DrDaniel R George and Dr Peter J
Whitehouse, who are the authorsof the book American Dementia
Brain Health in an UnhealthySociety.
Welcome, danny and Peter, andcongrats on the book.
Danny (00:32):
Thank you, jennifer, glad to be here.
Peter (00:34):
Thank you, Jennifer.
Jennifer (00:35):
Well, you know, let's just go ahead and start with
talking about.
You know some of the thingsthat you brought to the book
about.
You know, what really grabbedme at first was dementia is
going down, and you know whenyou look at data out there, like
, for instance, cms quotes that6.7 million Americans have some
(00:58):
sort of dementia in 2023, andtheir projection is 14 million
projected cases by 2060.
So when you read a book thatsays you know, over the time
span that you looked at it,dementia rates are going down,
as a clinician myself, I'm alittle perplexed.
Can you sort of lay that outfor me, danny?
Danny (01:19):
Yeah, absolutely, it's a bit counterintuitive because, as
you say, the you know, the sortof messaging that we get in the
culture is that you knowthere's a tidal wave of dementia
coming and we really have tobrace for the cost of that, and
you know the sort of tsunami ofAlzheimer's that we're going to
see.
And that's a great way ofraising funds, of keeping
attention focused on aparticular issue, and in fact,
(01:42):
the absolute cases of dementiaare growing because the
population is getting larger.
However, the nuance here isthat the relative risk of
developing dementia appears tobe declining quite significantly
over the last 30 years, notjust in the United States but in
other Western Europeancountries.
And you know it's a verycomplicated story that we could
(02:03):
get into, but just to boil itdown to the most simple parts,
it appears to be linked to a fewthings that we've done really
well over the 20th century,which is better treat vascular
risk factors, reducing smokingrates, keeping hypertension and
diabetes and things of thatnature in check in a better way.
(02:25):
The heart is intimatelyconnected to the head, to the
brain, and so anything thatwe've done that's helped
vascular health has probablyhelped brain aging.
We also have increasededucation significantly
throughout the 20th century,with things like the GI Bill or
the expansion of stateuniversities, pell Grants,
(02:46):
things of that nature.
Giving more people access tohigher education, appears to
have improved cognitive reserve,this ability that people tend
to have to be resistant to thepathologies of brain aging
without showing clinicalsymptoms of it, and also, of
course, lastly, getting led outof gasoline, which we did in the
1970s.
In the United States, bloodlead levels reduced
(03:09):
significantly from the 70s tothe 90s.
We, unfortunately, are nowdealing with a problem of lead
in the drinking water, but itappears that getting led out of
gasoline was another means ofreducing risk for dementia that
we're now seeing now for peoplewho are getting older.
Jennifer (03:25):
So I'm hearing you say a lot of like environmental
things have had a huge impact onsending that rate downward.
Is that fair to say?
Danny (03:37):
That's right.
I think it's really a publichealth success story, even
though we tend to think of thequote unquote fight against
dementia as a biomedical problemto be solved pharmacologically,
and the irony is, of course,that we have had about 100% fail
rate of anti-alzheimer's drugs.
It's been a real difficult pathand yet we are seeing these
(04:00):
benefits at the public healthlevel due to interventions,
state interventions, stateinvestments, state regulatory
successes with things like lead,and so I think there's an
important lesson there aboutwhat actually moves the needle
in terms of public health andwhere should we be putting not
just our resources but our hope.
Jennifer (04:20):
So we're really talking about changing things
way upstream, right, wayupstream, before people even get
to being in that bracket ofolder adult right that we need
some of this change becausethere are variables that impact
your health, and I think that tome, that just makes logical
(04:41):
sense.
Peter (04:44):
Well, the trouble with it .
You started your comment,Jennifer, by saying that
dementia is going down, but Ithink what Danny is saying, that
the lessons we've learned aboutpublic health and education and
quality of clean water and airwe have forgotten.
This is the American dementia.
Everybody wants to make a buck.
(05:05):
We're all out for each other asindividuals and not as
communities.
So we hope that we can tellthis story in American dementia,
brain health and an unhealthysociety, that it really depends,
as you say upstream, on thevery nature of our society.
You know maternal care andinfant mortality.
This is an intergenerationalissue and keeping your brain
(05:27):
healthy is the same as keepingyour body healthy, and we've
just got to do more of that froma public health perspective, in
our view.
Jennifer (05:35):
I agree I don't want to get into the whole public
health and what is happening aswe just come out of a COVID-19
pandemic, but I really dobelieve that public health has a
key piece here to play.
Another aspect of the book thatreally impacted me, as I
(05:55):
basically spent the majority ofmy career out in the community
doing that kind of nursing, isgoing to that holistic look,
making it.
All the variables that impact aperson, you know, be them
social, be them environmental,be them medical, to really get a
picture of that person in orderto figure out what's the best,
(06:20):
you know, what's the best thatwe can do for them.
And there's no better way thangoing to visit somebody in their
home to figure that out.
You know, I think for me I lovethat space because I do get to
see them, you know, in situ, inreal life, and that's where you
figure out, well, what'srealistic for me to do and what
(06:42):
are these other things thatother clinicians in a hospital
setting don't realize about thisperson.
Peter (06:51):
That's absolutely wonderful.
It's a statement about theimportance of nursing, because
you do take thisbio-psycho-social model out into
communities and that's whatpeople need.
People want to age in place,they want to find things to keep
themselves in their own homeand, fortunately, slowly.
(07:14):
One of the things we'relearning, I think, in the
long-term care business andindustry is that we shouldn't be
necessarily supporting justinstitutional long-term care,
but we should be providingresources to provide the
opportunity for people to stayin their homes, and nurses and
community visits are such animportant part of that.
Jennifer (07:35):
Kudos to that.
I would love to see moresupport to keep people where
they want to be at home Dan goahead.
Danny (07:43):
Yeah, I was just going to layer onto that to what you
both are saying.
Just in the 90s we had thisrevolution of person-centered
care that Tom Kittwood andothers helped lead, really
trying to see the whole personrather than the disease and
embed them in meaningful socialrelations.
That has evolved more recentlyto sort of relationship-centered
care and now community-centeredcare.
(08:03):
We have this movement afootcalled Dementia Friendly America
trying to think about how canwe make communities more
dementia-friendly, how can wedissolve boundaries that wall
off people with these diagnosesof mild cognitive impairment or
dementia or Alzheimer's from therest of society, when we know
that loneliness is a majorproblem, where we know that loss
(08:24):
of social bonds is a majorproblem, where we know that
getting detached from yourrelationships can upregulate
stress and be unhealthy forpeople?
How do we get back to a senseof community-based care?
And there are a lot of thingshappening, sometimes opening
their doors to people withdementia and their caregivers
(08:45):
Organizations like we can talkabout Peter's Intergenerational
School in Cleveland, which is aremarkable example of this.
How do you invite people withdementia diagnoses into serve as
reading mentors or mentors tolearn alongside elementary
school students?
But it's going to take somecreative thinking about how do
we currently treat our eldersand how do we currently position
(09:06):
them in the culture and how canwe sort of reverse engineer
some of the stigmatization andsegregation that we do with the
cognitively frail.
Jennifer (09:15):
Absolutely, and I know that ties into you.
Were talking in your book aboutage-friendly communities, the
WHO initiative, so you see allthat dovetailing into
age-friendly communities.
Peter (09:31):
Yeah, we are a big supporter of dementia-friendly
America, dementia-friendlycommunities.
I might mention anothermovement we've been involved in
reimagining dementia, becausethis is all about thinking about
people with that labeldifferently the stigma, as Dan
said.
The thing I would say assomebody who's developed these
(09:54):
intergenerational schools is weneed kid-friendly communities,
we need age-friendly communities, we need dementia-friendly
communities, we neednature-friendly communities.
So I wouldn't do communitydevelopment disease by disease
or age by age.
We really need to create morelivable communities for all of
us.
Jennifer (10:11):
I wholeheartedly agree and I hope we can see that
moving forward.
You know, all you have to do isturn on the TV and you have all
of these ads about you know,improve your brain health, do
crosswords, do Sudoku here, takeNoreva.
You know all these differentthings to you.
(10:31):
Know, keep your brain at itsbest working capacity for
whatever age you are.
What are your thoughts aboutsome of that stuff?
Danny (10:41):
Yeah, I think HG Wells said advertising is legalized
lying, and that's a lot of whatyou find in this.
What we call marketplace ofmemory products, which is a
multi-billion dollar industry,has largely targeted its
products to baby boomers overthe last few decades, but
increasingly is targeting themto millennials and zoomers in
(11:03):
terms of brain enhancement andspeeding up your cognitive
capacities and things of thatnature.
And they do meta-analyses of thedata for things like brain
fitness apps or video games ornutraceuticals or things of that
nature, all of which getmarketed to people aggressively.
The data is not very strong andI think it boils down to what
(11:25):
we were talking to just a fewminutes ago about drugs and
putting all of our faith insingle mechanism cures or
solutions to a very complexproblem.
And we can talk a little bitabout the nature of Alzheimer's
disease, but it's a syndromethat is intimately age related,
and so the idea of throwing onebrain fitness product at the
(11:45):
problem or one drug at theproblem is just sort of, on its
face, a bit reductive in its inits thinking.
So, as Peter saying, weencourage people to think in a
multifaceted, person centered,community centered way about
what it means to have quality oflife with dementia, what it
means to stay vital as a personwho may have some memory
challenges, as we all have.
(12:05):
We're not going to find theanswer in a market.
Jennifer (12:08):
Yeah, you know what, I hear you, danny.
But when you look at howhealthcare is set up let's take
CMS, for instance you have to.
I hate to throw us into thatICD-10 code thing, but someone
comes into the hospital and theyhave to have a primary
diagnosis, right?
Or for me, you know what's theterminal diagnosis, and then you
(12:32):
can have comorbidities go withit, right, that's fine.
But I think that clinicians aretrained to what's the one right
, what's the top dog right, andsome of those comorbidities
aren't necessarily considered asa syndrome or a confluence of
(12:53):
different diagnoses, that whenyou put them all together, we
have a different picture than ifyou just say, oh, this person
has dementia, and that this isthe picture.
I think our healthcare systemhas trained clinicians to think
in those kind of capacities dueto payment.
That's what we're talking about.
Peter (13:16):
Yes.
So, as a physician whose workwith CMS databases, we've
already seen an evolution of theterminology as our
understanding has increased.
They used to havearterioscarotic dementia or
heartening of the arteries, andwe're in the wave of a new
(13:36):
change.
That's challenging labels likeAlzheimer's.
Alzheimer's, as Danny said, isnot one thing.
There are multiple conditionsunder that, and when you get to
be an older person I can speakfrom personal experience and
there's a doctor taking care ofolder people you know that the
specific diagnoses are notalways as important.
(13:58):
There are lots of them, but thefact is it's the function, it's
what can you do to improvequality of life.
And sometimes labels likeAlzheimer's disease do more
damage than good.
And this label mild cognitiveimpairment and subjective
cognitive decline.
These are other labels that I'mjust throwing out that are in
this space of people trying tomake every older person sick,
(14:20):
and I'm going to make astatement here which is perhaps
a little provocative.
Unfortunately, the Alzheimer'sAssociation does a lot to
promote this kind of labelingand this kind of fear that Danny
mentioned about how many peopleare going to be affected over
what time period.
The fact is, as Danny said,we're all aging.
Our cognitive abilities change.
(14:41):
The question is, with whateveraging gives us, how can we be
personally responsible to takecare of ourselves as best we can
, taking our medicines orexercising and so on, but also
how can we work together tocreate communities that keep
people out in the community andout of those hospitals where
(15:01):
more damage can be done to olderpeople than good sometimes?
Jennifer (15:05):
Right, I completely agree.
You know, I think it isimportant.
I hear what you're saying and,having worked with a lot of
families over the years, theyhear one thing Maybe that's your
experience, peter but they hearone thing oh, mom has dementia
and that's what's going to takeher.
But then we say, well, mom hasdementia and she has high blood
(15:28):
pressure and she has diabetes.
So all of those things cometogether to bring whatever
outcome they do.
When I look at people, justbecause I have street cred as a
hospice nurse, it's like whatcontributes to the terminal
prognosis.
So I think let's take theterminal word away from that.
(15:50):
What is the person's prognosisif they have a handful of
chronic illness and dementia hasto be one of them?
Peter (15:58):
Yes, absolutely.
And since you've mentionedhospice, I think that's a very
important benefit we have inthis country because we all have
that.
This is an old joke, but I meanwe all have a terminal illness,
we all die, something theAmericans particularly want to
avoid, but the quality of deathand the quality of life become
(16:23):
intimately linked.
Once again, it's not hospicenecessarily bringing somebody
into the hospital or into ahospice facility, unless if they
want something, need somethinglike pain control.
But so much of that can be donein the home keeping somebody in
community doing the kinds ofthings that have made them human
their entire lives and keepthem human until their last
(16:44):
breath.
Jennifer (16:45):
Absolutely.
I couldn't agree with you more.
Another thing that stood out inthe book and I have a vested
interest in is health equity,and I thought you did great
coverage on health equity and,danny, you talked about in a
podcast I listened to recentlyand you all talked about things
(17:09):
like poverty and lack ofeducation and oh my gosh, lead
in water.
All of those things have animpact on not only brain health
but all health, all kinds ofhealth, whether you're a
pulmonologist or whether you'rea neurologist.
All of those things have animpact.
(17:31):
I'll talk a little more aboutthat.
Danny (17:34):
Yeah, absolutely.
That's a key part of the story.
I think Mentioned the conceptearlier of cognitive reserve,
which is this finding that forpeople who have more years of
education or who challenge theirbrains over the course of their
life by learning, by travelingand things of that nature, you
can sort of stave off dementialater in life.
(17:55):
Maybe your brain isstructurally or functionally
able to just be resilient tothose aspects of brain aging.
And, of course, if you'reimpoverished, if you're somebody
who is exposed to lead in yourenvironment as a child, if
you're somebody who has lesscapacity to exercise over the
course of your life, if you'resomebody who has less nutrition
(18:18):
over the life course and on downevery risk factor for dementia,
you know you're going to be athigher proportionate risk later
in your life.
And we have a chapter in thebook specifically about Flint
and you know who is mostaffected by the Flint crisis.
It's the poor people, mostlyblack population living in the
inner city of Flint and if yougo to any municipality in the
(18:39):
United States there's going tobe lead in the water.
The people who are subjected tothat are largely folks in lower
income brackets right, largelypeople of color, and so those
people are going to havediminished cognitive reserve
later on in their life, and sothe threshold for converting to
dementia is just going to beless for them.
And so we really do have tothink not just about cognitive
(19:03):
reserve, but what Peter and Ipromote in the book is a sense
of population reserve.
How can we as a societycollectively make investments
across the whole culture, thingslike the GI Bill and the Clean
Air Act getting led out ofdrinking water or led out of
gasoline in the 70s?
How can we make those kinds ofinvestments that scale across
the whole population, instead ofbeing like boutique products in
(19:26):
a marketplace of memory thatthe wealthy have access to right
?
And so we really do need tothink about dementia not just as
an individual illness, but atthe population level.
And how can we organize andcollectively invest to reduce
risk for everybody?
Jennifer (19:44):
So let's say I live in an underserved community and I
don't have great access tohealthcare.
I have lead in my water and Imight be trying to do all the
right things that I can eatingthe best that I can, exercising
the best that I can but thereare it sounds like there's
factors out of my control.
Peter (20:04):
That's right.
Then the role of the person asa citizen becomes important,
because our title is brainhealth in an unhealthy society.
Society is all of ourresponsibilities and you don't
want to put more burden on thosethat already have a lot of
burdens.
But, as Danny was saying andsimply put, it's income inequity
(20:26):
, it's the inequity that comesfrom a neoliberal, that's a
market fundamentalism, which isthe huge, the greatest problem
in the world.
It's not just America, that'sto say, the very richer getting
richer and the poorer gettingpoorer.
When you talked earlier aboutupstream, jennifer, that's
exactly what we're talking about.
(20:46):
We need to take action togetherto change our entire
civilization.
We often say Alzheimer's ismore important than Alzheimer's.
Why?
Because if you rethink whatwe're doing about Alzheimer's,
which is focusing on the medicalside and the research side and
don't focus on where we all livetogether, which is a society
(21:11):
that unfortunately has itsAmerican dementia, we are not in
a world of sustainablebehaviors.
And I will say another plugwhich comes out we've talked
about environment.
The climate crisis is all ofour problems.
I say the greatest threat topeople with dementia is the
climate crisis, because peoplewho have a dementia can't get
(21:34):
away from droughts and floods.
They get dehydrated, as you allknow, jennifer.
So that's another huge upstreamsocial issue we've got to work
on together that dementia bringsa magnifying lens to.
But it is not a problem of justdementia, it's a problem of our
entire society.
Jennifer (21:51):
Well, I live close to Washington.
Maybe I should take a big stickdown there and get them on the
run from doing some betterpolicymaking.
I don't know if I could do thatmyself, but CMS recently put
out it's a payment innovationmodel and it's specifically for
(22:16):
individuals diagnosed withdementia.
It's the first I've really everseen them do anything that was
disease specific and I quotedearlier to you their data that
they're showing and theirprojections, so they're testing
the waters with this model thatreally just taught.
(22:37):
The model is talking aboutdoing good coordinated care,
particularly paying attention tounderserved populations, making
sure they have access and havea hand holder through their
medical care.
It also is looking at whetherthe social factors that impact
(22:59):
this individual and hey, here'ssome support for your caregiver.
Just me describing this, and Iknow we gave you a little look
behind the curtain with the CMSfact sheet what is that dovetail
in with your thoughts aboutwhere America needs to go in
(23:21):
terms of doing better with brainhealth and keeping that
dementia rate going downward?
Peter (23:31):
Certainly I celebrate that CMS is paying attention to
this issue.
They tend to neglect long-termcare and those kinds of issues
in general.
I mean, the big problem withthat is who's going to provide
that care, and you know,community health workers and
people who are out in thecommunity just are not
adequately reimbursed and paid.
So we're not going to have acaring society until we pay the
(23:53):
people who provide care more,and in that little graphic the
person and it appears to be aman who is helping them, and
then the CMS model has a whitecoat and a stethoscope on, and
so I.
There is a community workerthere involved as well.
But CMS has got to somehowfigure out what you were talking
(24:15):
about before.
It's not all doctors who needto get paid, it's not all
diagnoses, it's people thatactually can provide the
hands-on care in community.
So that worried me a little bit, because we don't need more
high-paid doctors.
We need more better-paid socialworkers, nurses and community
aides community workers, in myview.
Danny (24:36):
And on that note, we should probably thank you,
jennifer, and your listeners,for the work that you do on the
ground, because it is vital andimportant work, and we,
unfortunately, are in a culturethat focuses disproportionately
on cure and the biomedicalapproaches to these problems.
But what we do try to shine thelight on is this focus on care
as being primary and the focuson prevention as being primary,
(24:57):
even though those aren't asmonetizable as the cure path.
But that's where our humanityis right, that's where our
collective responsibility is,that's where our values together
can be manifest most clearly.
So just want to thank you allfor doing the work that you do.
Jennifer (25:16):
Thank you, and you know what I agree with you,
Peter.
I think this is a first boatfloat in the water.
You know it's a demo, it's ademonstration project.
Hopefully there'll have enoughapplicants that will want to dip
their toe in that water and seewhat it's about, and hopefully
(25:36):
the outcome will be that therewould be good data on the
backside in terms of payment, interms of structure, all of
those things where a betterprogram could be built.
But I applaud them for evenputting it out there.
This is pretty big for them todo that.
(25:56):
With my years of experience and, Peter, probably you have a
wealth of experience interfacingwith CMS as well- Well, I think
you're right.
Peter (26:08):
I mean, CMS has billions of dollars in their innovation
fund.
They're just so huge and Ithink we can look with hope to
the pace.
The program for all inclusivecare for the elderly, which did
start just as the way this guideis program is starting and then
eventually became ademonstration and then
eventually became reimbursableservices and for those of I'm
(26:33):
sure most of your readers knowabout it, but basically it is
centered around communityservices.
The idea is to try to keeppeople in their homes and in
daycare and in the community.
So, yes, absolutely.
Cms tends to focus on where theyspend a lot of money, so
they've been spending a lot oftime trying to keep people out
(26:54):
of emergency rooms.
Well, that's not a bad thingtoo, because as a doctor taking
care of people out in thecommunity, the last thing I
wanted to do with a patient withdementia or an older person in
general was to take them intothe hospital environment.
So, the more that CMS and themore that the long-term care
industry can keep people out ofhospitals and nursing homes and
(27:16):
in the community, let's see moreinnovation in that space.
Jennifer, I can't agree withyou more.
Jennifer (27:22):
Absolutely.
You know, my experience hasbeen that we have patients who,
with a dementia ICD-10 diagnosis, come to hospice and then they
get a little bit of TLC, goodsupport, interdisciplinary care,
and guess what happens?
They plateau right.
Medicare benefit tells us wehave to discharge them back out
(27:46):
because they're no longerterminally ill, you know.
So I'm hoping maybe thisdemonstration, with that
interdisciplinary approach, somebuild-in for the caregiver, you
know, will help where it'sneeded in terms of dementia.
All right, so I'm going toclose out with a last question
(28:10):
for you both, and that is whatare your thoughts on how
providers can enhance quality ofcare for patients with dementia
?
We know that in all areas ofthe care continuum in America,
clinicians are seeing patientswith dementia.
How can we enhance quality ofcare for those individuals?
Danny (28:36):
Well, peter is a clinician, so I definitely will
want to hand off to him on this.
But I can just push a conceptthat we talk about in the book
sort of tongue-in-cheek but in aserious way, which is social
pseudicles.
So this is obviously a conceptthat is juxtaposed with
pharmaceuticals, which, again,have not been very effective at
all in dementia care.
But what we do know works is afocus on purpose and play and
(29:02):
relationships, and there arethings like bringing music into
dementia care settings, bringingintergenerational relationships
into dementia care settings.
I have my medical students docreative storytelling project
called time slips, which engagesthe imagination of people with
dementia.
Opening minds to art is anotherway of using visual arts to
(29:26):
empower people with dementia tobe expressive through artwork.
There are a lot of differentways where we can use the arts
that connect to somethingquintessentially human in
somebody who may have memorychallenges and create
relationships around them, andexposure to green space is
another very important one thathas been has increasing data
(29:48):
around it.
So how can we think creativelyabout improving quality of life,
creating relationships aroundpeople with dementia, using the
arts, using the resources inlocal communities?
That would be where I wouldsuggest we spend some
imaginative time.
Peter (30:05):
So I actually think it's interesting that Danny answered
that question, because heanswered it in a non-medical way
, which I think is the way Iwould answer it too.
The way to improve quality ofcare is not to think of it as a
medical problem, to think of itas an issue around a person
trying to live in community.
That said, I would say onething that you should do is to
(30:26):
be nice to young people, so I'mhoping that Danny will provide
some care to me as I get olderand will notice when I become a
little unable to remember how Icalled him, dave or Dan.
It's Danny, I got it right thistime.
The other thing is yes, I writeprescriptions for dance
literally.
So that's a sociosutical.
I can't say the word either,but the idea that it needs to be
(30:52):
.
Now I should say it has to bebased on the interest profile of
the person.
If they have not been a dancer,okay, well, maybe you can pick
something else, but everybodyloves music to one degree or
another.
So music, dance, socialization,which dance gives you,
storytelling, which dance givesyou.
(31:13):
So I picked dance because it'san artistic combination of lots
of embodied things, includingrelationships.
So, yes, so this is absolutelyhow you improve the quality of
care.
And the other part of this, ofcourse, is that for as long as
we've been a species, it's beenthe family that have cared for
(31:35):
people with dementia.
So informal care and formalcare sometimes really can't be
separated entirely.
It's supporting the caregivers,giving them time and educating
them.
And I'm going to end with aquick story, because if they
listen to all the hype from theAlzheimer's Association and they
(31:58):
only think of it as being acaregiver burden, I sometimes
say you create a patient, thenyou create a burden.
Caregiver Caregiving can bejoyful, it can be difficult, but
it's also a part of life and sothe idea that we should.
For example, I was working withfolks where a woman was crying
(32:19):
frequently and it became veryclear she had a condition that
I'll use the medical term for, apseudo-ball-bar affect, which
meant she just couldn't controlher emotions.
So the idea was to tell thecaregiver not to drug her but to
say look, she's got a littlebit of emotional dysregulation.
It doesn't mean she's sad, itdoesn't mean every time she
cries she's unhappy.
(32:41):
Know that that's just somethingthat happens and you can adapt
to it by being supportive butnot going overboard with regards
to, for example, as I said,giving medications, which is
something that often happens.
So just understanding the rangeand variability, what can
happen, and that's personalizedmedicine, it's learning the
(33:05):
story of the caregiver and theperson and giving them
information that's helpful tothem, the response to the
particular symptoms andinterests that that couple or
that family has had beforedementia occurred.
Jennifer (33:18):
The individual care plan.
It's a beautiful thing.
I love it.
Well, thank you so much, dannyand Peter, for joining our
CHUPcast today to talk aboutyour unique and innovative look
at dementia in the US today.
Any final thoughts for ourlisteners?
Peter (33:42):
I think an overarching theme is a person with the label
of dementia or Alzheimer's isfirst and foremost a person.
But to take away that humanitybecause they have that label,
and engage with them as youwould with anybody, recognizing
that we all have our strengthsand weaknesses as we get older,
(34:05):
so bring forth the humanity anddiminish a bit the exclusive
focus on making it all medical.
Jennifer (34:13):
Thanks, peter, that's great, danny.
Danny (34:16):
So yeah, just in closing, I'd like to say you know, let's
keep the pressure on ourpoliticians and our institutions
to actually serve people andtruly bring about equity and
equality in the country.
And you know, to connect withwhat Jennifer said earlier, we
should all speak softly andcarry a big stick and let's keep
that pressure on Washington.
And just to add on to that, youknow people can continue the
(34:39):
conversation with us.
We have a website,AmericanDementiacom.
We're also on Facebook.
People can find us at the Mythof Alzheimer's, which was our
first book.
We have a community there thatwe share articles with.
From time to time.
People can engage in an ongoingdialogue about these issues
with us there.
So, yeah, please just stay intouch with us, and we appreciate
everybody's interest.
Jennifer (35:00):
Well, thanks to all of you for taking time out of your
day to join our podcast.
Hopefully you took away a lotof pearls of wisdom.
I know that I did aboutdementia and a different way to
look at it.
So, from Chap and myself,thanks for all you do and be
safe and well.
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