February 25, 2025 • 33 mins
Welcome to another episode of Aging Unfiltered. In this episode, we learn more about Dementia Friendly America (DFA) and how its work is focused on creating communities that are inclusive and supportive of individuals living with dementia. Joining us are Sandy Marwood, CEO of USAging and Mary Ek, Director of Community Care Corps and Dementia Friendly America at USAging. Through education, advocacy, and local partnerships, DFA fosters understanding and helps remove the stigma surrounding dementia and combat ageism. Their collaborative network empowers citizens, businesses, and organizations to make communities safer and more accessible for people who are living with dementia and their caregivers, ensuring people of all ages can thrive.
Resources
Home Page - Dementia Friendly America
Memory Cafe Directory - Dementia Friendly America
51st Annual Meeting – AgeGuide
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Gretchen (00:00):
Welcome to the Age Guide, Perspectives on the Aging
Journey.
I'm your host, GretchenKnowlton, and I'm thrilled to
continue our series, AgingUnfiltered, where we dive into
the realities of ageism and howto challenge it.
In this episode, we're focusingon how ageism impacts
(00:21):
communities and exploring anational initiative working to
create more inclusive,age-friendly spaces.
Today, I'm joined by twoincredible guests from U.S.
Aging.
First, Sandy Markwood, CEO ofU.S.
Aging, will talk about theDementia Friendly America
Initiative and its impact oncommunities.
(00:42):
Later, we'll hear from MaryEck, U.S.
Aging's Director for CommunityCare Corps and Dementia Friendly
America, who will share herperspective on advancing these
initiatives across the country.
Let's start with Sandy.
Sandy Markwood, CEO of U.S.
U.S.
Aging since 2002 is apassionate advocate for aging
(01:05):
issues and a champion forhelping older adults age well in
their homes and communities.
Under her leadership, U.S.
Aging has advanced initiativesto combat social isolation,
support caregivers, promotehealthy aging, and create
dementia-friendly communities.
And our second guest is MaryEck, Director of Community Care
(01:28):
Corps and Dementia FriendlyAmerica at U.S.
Aging.
She played a key role in thedevelopment of Dementia Friendly
America and continues toadvance its mission under U.S.
Aging's leadership.
Let's get started.
So, Sandy, thank you so muchfor being here today.
I'm so happy to have you as aguest.
Sandy (01:49):
Oh, Gretchen, I'm thrilled to be here.
Thanks so much for inviting me.
Gretchen (01:53):
Of course.
Let's start at the beginning.
Take us back.
What inspired the creation ofDementia Friendly America?
Was there a defining momentthat set this initiative into
motion?
Sandy (02:08):
Well, for a stretch, and I have to say that when we're
focusing in on Dementia FriendlyAmerica, this is a
mission-driven initiative, andit's one that I am both
professionally as well aspersonally committed to.
So looking at this through theprofessional lens, you know, we
(02:29):
know that there are more than 6million Americans who are living
with Alzheimer's, but we alsoknow that there are between the
ages of 75 and 84, 13% ofAmericans who are living with
dementia.
And that number rises to 33%when we're looking at people
(02:50):
over the age of 85.
Wow.
Couple that, those numbers,which are staggering, with the
fact that over 11 millionAmericans are providing unpaid
care to people who are livingwith dementia.
And when we're looking atpeople living with dementia,
oftentimes people think thatthey're living in nursing homes
(03:12):
or some other type ofinstitutional setting.
But the truth is 80% of peopleliving with dementia are living
at home and in the community.
So responding to the needs ofpeople living with dementia and
their care partners is reallycritical.
And that's what DementiaFriendly America is all about.
And as I mentioned, personally,my mother had vascular
(03:36):
dementia.
So I know the struggles ofpeople who are living with
dementia and their care partnersin navigating not just
services, but really just livingday to day at the community
level.
So because of both the personaland the professional commitment
that I have, And alsorecognizing the incredible work
(04:00):
which really spurredDementia-Friendly America, which
was learning from the work thatMinnesota had done through
their Act on Alzheimer'sinitiative, which was really
led, administered by a AAAtrellis in St.
Paul, and really It reallyincorporated AAAs throughout the
state and communitiesthroughout the state.
(04:22):
And in looking at the impactthat that initiative had on the
lives of people living withdementia and their care
partners, there were a number ofnational organizations that
came together and said, we needto replicate the Act on
Alzheimer's model at thenational level.
You know, a variety of nationalorganizations, aging
organization, Alzheimer'sorganizations, chiefs of police,
(04:46):
local governments, pharma,people all over the spectrum of
organizations, public andprivate, came together and said,
we need to make this a nationalinitiative.
And so at the White HouseConference on Aging, and 2015,
it was announced DFA was adoptedas a national dementia friendly
(05:08):
initiative and US Aging was sopleased and honored to be given
the opportunity to administerthis national initiative.
So that's how we got started.
And we're just about to reallyrealize our major anniversary in
2025.
And with this commitment tomake this a national initiative,
(05:33):
a national movement to ensurethat people who are living with
dementia can thrive at thecommunity level.
And that's what DFA is allabout.
Gretchen (05:43):
People want to get involved and they want to bring
it back to their local area andThey can probably do some
customizing, which we'll have totalk about so that it really
meets their individual uniquecommunity needs.
And I'd love to hear more aboutthat in a minute.
We've been sharing on thispodcast series that we're doing
about how ageist stereotypescreate barriers for older adults
(06:07):
so that it makes it moredifficult for them to age well.
How does an initiative likeDementia Friendly America break
down those stereotypes, do youthink?
Sandy (06:19):
Well, Gretchen, as you know, that when we're looking at
the issues of aging and ageism,it's really prevalent when
we're talking about looking atpeople's thoughts and
impressions and the stereotypespeople have of people as they
age.
But that's intensified whenwe're really looking at people
who are living with dementia.
(06:40):
And the barriers that are putup, even before a diagnosis, but
when people get a diagnosis ofdementia, it is amazing.
And I can talk about this bothpersonally again and
professionally, where peoplewalk away from people who have a
diagnosis of dementia.
(07:00):
That all of a sudden, insteadof looking at dementia as a
journey, which can last years,people immediately go to that
end of life perception ofsomeone who is living with
dementia and they startdiscounting them.
They think of them as lesscapable, as frail.
(07:21):
They think only of declininghealth and immediate declining
cognition.
And because of that, that tendsto make the individual with
dementia socially isolated.
know friends step awaydifferent groups that they were
involved with don't necessarilyaren't as quite as welcoming and
(07:45):
part of that is based on fearand that fear is based on not
understanding um the whole scopeof dementia which again is the
goal of dementia friendlyamerica and dementia friends is
to create an understanding ofwhat people, the journey of
(08:05):
dementia and what people who areliving with dementia go through
and how best to support themand their care partner.
Gretchen (08:13):
really a unique concept, I think.
We in the aging world talk alot about individuals needing
services and supports.
And we also, of course, provideall of those services to
caregivers.
And we're always talking aboutthe value of the caregiver.
But I like the way this kind ofturns it and opens up the
(08:35):
intervention to all of us.
We're all a part of thisstrategy, right?
The whole community needs toget involved.
It's not just the individualwith dementia.
It's not just their family andtheir caregiving team.
It's all of us.
We can all contribute to this.
We all have a role to play inmaking our world better for all
of us.
(08:55):
And it seems like that's reallywhat you're describing here.
Sandy (09:00):
You know, Gretchen, you've nailed it.
That's exactly what we'redescribing.
And again, from a personalperspective, when I was on the
journey with my mother who hadvascular dementia, as an aging
professional, I could navigatethe services that she needed.
What was very difficult for meto navigate was taking my mom
(09:22):
out into the community.
At that point, my children wereyounger, so I was dealing with
my mom and also with mychildren.
And going out into thecommunity to a grocery store,
going into the bank, trying tofind a hairdresser who could
understand what she was goingthrough and also what I was
(09:45):
going through, to be able totake her into a doctor or a
dentist and realize that sheneeded a different level of
support in those types ofsettings.
So that's what DementiaFriendly America is all about.
It's looking at the wholecommunity and how the whole
(10:05):
community can come together tosupport someone who is living
with dementia and theircaregiver.
Gretchen (10:11):
Wow.
That makes a lot of sense.
I love that.
So looking ahead, what's yourbiggest hope for Dementia
Friendly America?
What legacy are you hoping tocreate?
Sandy (10:23):
This will make Mary nervous, but I want every
community in the country to be adementia friendly community.
I want dementia friend trainingto be part of what all
communities offer.
I would love to see dementiafriend training in the school
systems.
I think that as we look atplanning for communities, it's
(10:46):
not just planning for anage-friendly community, it's
planning for a dementia-friendlycommunity.
Gretchen (10:53):
Wow, that's a big dream.
I love
Sandy (10:56):
that.
It is a big dream.
It is a big dream.
But as Mary will highlight, weare well on our way with having
state leads around DementiaFriends.
And also in looking at theopportunity that we have with
over 400 communities alreadyinvolved.
And we almost, you know, we'regetting close to over 200,000
(11:19):
Dementia Friends.
So we are well on our way.
We've got a lot of momentum.
And it's It's up to us all toensure that that momentum
continues.
Gretchen (11:30):
Yes.
And so what do you think we canall do to help you in this?
The last question I was goingto ask you, Sandy, is about
public policy and advocacy work.
What can folks do if they wouldlove to see this spread and
they want their community tohave this?
What policy changes do youthink we need?
Sandy (11:52):
Well, I am hoping that at the community level that we ask
questions of our local electedofficials, our state officials,
and our national officials.
Given the statistics that Istarted out with about the
prevalence of dementia incommunities across the country
is...
We ask the questions, whetherwe're doing planning for, or
(12:16):
zoning or, you know, where aresupports that other supports at
the community or state level andnational level, as well as how
is this going to impact peopleas they age?
How is this going to impactpeople who have dementia?
And you can add on otherchronic conditions as well.
(12:37):
And what can we do to supportthem and their caregivers?
So it's a filter that we shouldhave to be able to ask the
question and raise the issuethat that as people age, we need
to be able to, again, value andsupport them as people get a
(12:58):
diagnosis.
And we do hope people aregetting diagnosis of mild
cognitive impairment ordementia, that it's not as it
was before.
In some cases, people thought,well, that was it.
You know, let's close the tent.
No, it's like, Now what?
Now what's available throughthe Area Agency on Aging,
(13:22):
through the Alzheimer'sAssociation, looking at what we
can collectively do together tobe able to respond to those
needs.
And policy is going to play animportant role in that.
But for policy to play animportant role, people need to
advocate.
You need to advocate for aging,And you need to advocate for
(13:46):
ensuring that people who areliving with dementia, again, 80%
at home and in the communitylevel, are able to thrive at
home and in the community.
I
Gretchen (13:58):
love that.
you talked about this as beingsort of a mindset change, right?
We need like a new filter tothink about people with dementia
and other chronic conditions.
And it kind of reminds me ofother accommodations that we do
in our community for people whohave any kind of challenge,
(14:19):
right?
So when they decided that itwas going to be required to put
cutouts in the sidewalk forpeople who needed to use a
wheelchair, that also becomesconvenient for the rest of us,
for parents who are pushing astroller, for people who are
pulling their groceries, forsomeone who's riding a bike and
needs to enter onto thesidewalk.
It became an accommodation thatwe all could enjoy.
(14:40):
And I think what you'redescribing is something that can
make life better for all of usin the community.
Some of the adaptations and thelittle tweaks and changes to
how we do things for someonewith dementia can be helpful for
people with other kinds ofdisabilities, maybe people with
developmental disabilities orpeople who are visually impaired
(15:01):
or hard of hearing, some ofthese things will be helpful for
many people, even for theperson next door or for you and
I.
There can be things that justmake life better.
And so I think we should all beembracing this to have a more
inclusive society.
This is a really neat work thatyou're doing.
Sandy (15:18):
Christian, I absolutely agree, and I love what you said,
which is true, and we foundthat true about age-friendly
communities.
A dementia-friendly community,and one of the examples I'm sure
that Mary will highlight iswhat we found with
dementia-friendly businesses.
There are so many simple thingswe can do that, again, make
(15:39):
life better for people livingwith dementia, but also make
life better for all of
Gretchen (15:46):
us.
Right.
So that's just one more reasonthat every community needs to
get on board with this.
And that's probably a goodselling point for it too.
And you can talk about how ithelps everyone, right?
Wonderful.
Thank you so much for sharingyour thoughts and your vision
for the future and ways that wecan all get involved in this and
advocate for aging and advocatefor people aging with dementia.
(16:07):
I really appreciate that.
Before we continue thisconversation, a quick note.
We have a couple of excitingopportunities coming up for you
to meet and mingle with ourincredible show guests.
First, we're honored to haveSandy Markwood as our keynote
(16:31):
speaker at AgeGuide's annualmeeting and luncheon on Friday,
April 25th, 2025 in Lombard,Illinois.
You can register on theAgeGuide website to come here
and meet Sandy in person.
Second, US Aging just happensto be hosting their annual
(16:52):
conference and trade show righthere in Chicago from July 20th
to 23rd.
If you've been inspired bySandy's insights on
dementia-friendly communities,you won't want to miss this
event.
It features a range of workshoptopics on aging, advocacy, and
(17:12):
community-based services.
Registration opens April 7th,so mark your calendars and get
ready to join leaders,innovators, and change makers in
the field of aging.
We have a link to the webpagein the show notes.
Let's turn it over to you now,Mary.
You are at the implementationlevel of this, I presume, and
(17:37):
can give us a little bit more ofyour thoughts on this.
Let's start with, can you giveus a dementia-friendly
definition, kind of an overviewof exactly what it means and
what it is?
Mary (17:51):
Absolutely.
And thanks for having me,Gretchen.
It's a privilege to be here anda privilege to do this work.
As a former caregiver for mygrandmother, who I cared for
when I was a teenager and wedidn't call it dementia.
And now we've moved to beingable to talk about dementia for
my in-laws.
(18:11):
It's been wonderful to be partof this work and see the
progress being made in terms ofreducing stigma and resources
available.
So I've been able to see theproof in the pudding.
You're
Gretchen (18:26):
right.
There's been some real changeabout even being able to talk
about dementia, right?
Mary (18:31):
Yeah, absolutely.
Absolutely.
So to kind of sum up theexamples that Sandy gave and her
experience as a caregiversupporting a loved one with
dementia, we define adementia-friendly community as a
village, town, city, or countrythat is informed, safe, and
respectful of individuals livingwith dementia, their families,
(18:53):
and their care partners, andprovide supportive options that
foster quality of life so thatthey can live and engage in
community.
They can remain in their homesfor as long as possible, knowing
that they're surrounded bypeople that are helping make
that possible and helping makeit possible for their care
partner to enter into communitywith their loved one, knowing
(19:15):
that they will have addedsupport and they won't have to
face some typical challengesthat they may face going into
the grocery store or the bank,like Sandy mentioned.
So it's kind of pulling all ofthose sectors together.
So we have learned very quicklythat providing supports in the
(19:36):
community and embedding those incommunities that people can
live and work, engage and thriveand are able to remain in their
homes longer.
As Sandy mentioned, the exampleat the grocery store, you know,
at the bank, you know, goinginto a faith community.
And that's often where much ofour work will start in our
communities because that's, youknow, a place of safety for many
(19:58):
people and a place of routinewhere they go for that comfort.
But that can become a challengeas dementia sets in.
And so we have sector guidesfor various sectors in the
community that gives specificexamples of practices that they
can implement in their sectorthat would allow for a more
(20:19):
welcoming environment for peopleliving with dementia and their
care partners.
You know, in a faith community,for example, a shorter service,
more familiar songs, you know,on a simple song sheet that a
person living with dementia canfollow along.
Somebody escorting them, ifthey are living alone, or if a
care partner can't go, avolunteer from the community to
(20:42):
sit with them, to help themfollow along, help them sing
along, name tags, some verysimple steps that sectors can
take to make their their sectormore welcoming.
Gretchen (20:55):
So that gets us back to the question that came up
initially for me, which was howcan communities kind of
customize this for their ownunique needs?
Each community, as you know, isso different.
So are they able to just kindof make their own plan based on
what they need and whatresources they already have
(21:16):
available in their community,what maybe some of their
specific challenges are?
Mary (21:21):
Absolutely.
That's the beauty of this workis that it is flexible.
So we have customizableresources.
So our sector guides, has somestandard information, but then
an area where communities caninclude their local resources on
that guide.
As long as, and I failed tomention this earlier, that they
(21:43):
are including people living withdementia and care partners in
the process.
So that is one of our keyrequirements for this work and
for creating an action team isthat it's being informed by
people who are living withdementia and their care partners
because they know the true needand what they would like to see
when they walk into the grocerystore, when they walk into a
(22:03):
bank, when they go to theirplace of worship.
Gretchen (22:07):
That's really unique.
And that would be a hands-onexperience in becoming dementia
friendly as you try to involvefolks with dementia in the
planning process and in thedecision making.
Gives everybody that exposureand that experience and probably
breaks down some of those fearsyou were talking about too.
Mary (22:23):
Absolutely.
I think it's an example rightthere that of what people living
with dementia can do and cancontribute.
You know, I know how I want tobe received when I walk into the
grocery store.
I know how I want people torespond when I might be
struggling to find something ornot really sure what I came in
(22:44):
here for.
I want people to, you know,respond with respect and not shy
away from recognizing thatthere's something going on here.
And, you know, how can I besupportive?
I didn't mention earlier abouta new initiative that is now
falling under Dementia FriendlyAmerica is the Memory Cafe
Alliance.
And when we talk about ageismand what older adults are
(23:10):
capable of, I think the MemoryCafe captures that very well.
There are opportunities toengage and opportunities for
care partners and their lovedone living with dementia to
engage together and enjoy anactivity together so these
memory cafes are wonderfulopportunities and often are
included in our dementiafriendly community efforts is
(23:34):
starting memory cafes and theyusually include an art activity
music some kind of funengagement for people living
with dementia and their carepartners and and that's been um
That's been a huge asset to ourteam.
We have a memory cafe directoryon our website now so that
people can put in their zip codeand find memory cafes near
(23:58):
them.
And here are opportunities toengage.
And in dementia-friendlycommunities, we are working to
create opportunities wherepeople living with dementia can
engage.
You know, movies where thelights are kept on.
And there's a restroom breakmidway through.
You know, restaurants likeSandy mentioned, a quiet space
(24:22):
in a restaurant.
And that's, like you said,often people living with autism
are looking for a quieter placein a restaurant.
So it serves many people withjust some very simple changes.
And so we know that thatcreating these communities where
people can live, engage, andthrive benefits all.
It really, you know, it can bea focus on dementia, but in the
(24:45):
end, it's, as my son would say,so isn't it just about seeing
people and being nice?
And I was like, well, it is,you know, there is a lot to
that.
It is about seeing people,recognizing a need, and
responding to that need.
Gretchen (24:58):
And You know, you've mentioned it a couple times.
There's definitely a stigmaaround dementia.
There's a lot of fear of notunderstanding it or not knowing
how to respond or what if I saythe wrong thing or come across
the wrong way or I don't knowwhat to do.
So there's that fear component.
It seems like there's a lot ofintersectionality with that and
(25:20):
ageism, right?
Ageism comes, I think, from amisunderstanding or some
misguided notions of what itmeans to get older and some
stereotypes that we have.
And we also have a lot ofstereotypes around dementia.
And there's some intersectionwith that.
Sometimes people think thateveryone who's old has dementia.
Sometimes people think thateverybody who has dementia must
be old.
And neither of those two thingsare at all true.
(25:43):
But we kind of categorize themtogether.
So that's why I think this issuch a great topic to talk about
in this podcast series wherewe're focusing on ageism because
of that layering and thatintersectionality between
dementia and ageism.
So I wonder if you have anyother specific thoughts on how
to kind of enhance ourunderstanding of both of these
(26:05):
things and support individualsliving with dementia and their
caregivers, as well as combatingageism.
Mary (26:14):
You know, I think Sandy made a very good point about
just the seeing the value andworth in older adults and people
living with dementia.
There's still so much they cando and want to do and want to be
engaged in and want to wake upand have a purpose and a place
to go and a place to engage.
(26:35):
And I think an example of thatIt is difficult to choose just
one story.
We hear testimonials every dayof the impact of our work on
those not living with dementia.
And this impact, which hasoften increased awareness and
understanding, has the veryimpact on those living with
dementia that we had hoped forwhen we launched DFA.
One particular story that comesto mind is from years ago when
(26:59):
I attended a dementia-friendlycommunity kickoff meeting on the
East Coast.
And that's something we oftendo.
We're invited to kind of do thelaunch of a community
community-wide initiative andshare information about what's
happening at the national level.
And it's really an honor to beinvited to those events.
And at this one, there were anumber of presenters, leaders
(27:21):
from various sectors committingto engaging in the effort.
And I shared my generalinformation.
And then what they often doduring a kickoff meeting, which
we recommend, is having a personliving with dementia share some
of their experiences And inthis particular case, the person
(27:42):
living with dementia was a manwho was in his 40s living with
dementia.
And he gave, you know, just areally compelling story for
anyone who may have questionedwhy this work is important.
And he shared some experiences,you know, on when he was
(28:04):
engaging in the community or outand about running errands and
really just brought it to lifefor many people.
And after the...
After the kickoff, I was justvisiting with people and a
gentleman approached me and Ishook his hand and I introduced
myself and he told me he was tooembarrassed to tell me his
(28:25):
name.
And when I asked him why, heproceeded to tell me that he
didn't want to come to theevent, but his boss told him he
had to, to represent theirbusiness.
And he didn't think it was atall relevant.
And why do we need to learnmore about dementia?
People with dementia won't bein our shop.
And, you know, it was a localgrocery store.
The reason he was embarrassedis that it turned out the man
(28:48):
living with dementia who sharedhis story was this man's
neighbor, and he confessed tonot being patient with him when
they would cross paths in theneighborhood.
He had no idea that this manwas living with dementia and
that he looked like a normalyoung guy, which, as we know
after our call today, thatthat's a common misperception
(29:09):
with people that they just haveone face when they think of
dementia.
And he went on to say that thisevent changed his entire
perception.
As it turned out, the manliving with dementia joined us
as we were wrapping up ourconversation.
And the embarrassed gentlemanintroduced himself by name and
(29:30):
told his neighbor that he wassorry for his ignorance and that
he had learned a lot todayduring that presentation.
And they hugged.
And, you know, it was just...
a real tender moment, I think,for both of them.
I think validation to the manliving with dementia, but also
just...
I felt like it was anonjudgmental wake up to the
(29:55):
gentleman who did need to learnmore about dementia and the
faces of dementia.
And it was just, I would, youknow, certainly a humbling
experience, but also why DFA ishere, why we need to bring this
information to communities tomake our communities stronger
and friendlier for all.
Gretchen (30:16):
Yes, what a powerful story and a perfect example,
like you said, of why this is soimportant.
And I think I can totallyrelate to thinking about you
know, that I already know aboutsomething and I'm sent to go to
something by my boss and I don'treally want to go there.
And then you hear this kind ofinformation and you realize that
(30:38):
it impacts everyone and itimpacts you and it impacts
people that you know, and it canbe game changing.
So this training is just soimportant.
Thank you for sharing thatstory.
You're welcome.
It's a great example.
Mary (30:51):
Yeah.
Yeah.
It was a privilege to witnessthat.
Val (31:01):
Hello and welcome to your Medicare Minute.
My name is Val Guzman and I'mthe Benefit Access Specialist
here at AgeGuide.
A lot of people ask about whenthey can change their Medicare
Advantage plan.
(31:21):
The Medicare Advantage openenrollment period runs from
January 1st to March 31st, soyou still have time to enroll in
a new plan.
This open enrollment period isa little less known mainly
because it applies only topeople that are enrolled in an
Advantage plan as of January1st.
So you can either change to adifferent plan or you can switch
(31:45):
to original Medicare.
A good way to compare theseplans is by checking with your
doctors to see which plans theydo accept so you know which
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for you.
Then you can compare how muchthe plans cost and the extra
benefits that they offer.
(32:06):
If you enroll in a new plan, itwill take effect the following
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But feel free to ask a SHIPcounselor about your plan
options or go to our website atahguide.org for more
information.
Gretchen (32:25):
Thank you for listening to The Age Guide,
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(32:48):
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Thank you and we will see younext time on the Age Guide
podcast.
Welcome to the Age Guide, Perspectives on the Aging
Journey.
I'm your host, GretchenKnowlton, and I'm thrilled to
continue our series, AgingUnfiltered, where we dive into
the realities of ageism and howto challenge it.
In this episode, we're focusingon how ageism impacts
(00:21):
communities and exploring anational initiative working to
create more inclusive,age-friendly spaces.
Today, I'm joined by twoincredible guests from U.S.
Aging.
First, Sandy Markwood, CEO ofU.S.
Aging, will talk about theDementia Friendly America
Initiative and its impact oncommunities.
(00:42):
Later, we'll hear from MaryEck, U.S.
Aging's Director for CommunityCare Corps and Dementia Friendly
America, who will share herperspective on advancing these
initiatives across the country.
Let's start with Sandy.
Sandy Markwood, CEO of U.S.
U.S.
Aging since 2002 is apassionate advocate for aging
(01:05):
issues and a champion forhelping older adults age well in
their homes and communities.
Under her leadership, U.S.
Aging has advanced initiativesto combat social isolation,
support caregivers, promotehealthy aging, and create
dementia-friendly communities.
And our second guest is MaryEck, Director of Community Care
(01:28):
Corps and Dementia FriendlyAmerica at U.S.
Aging.
She played a key role in thedevelopment of Dementia Friendly
America and continues toadvance its mission under U.S.
Aging's leadership.
Let's get started.
So, Sandy, thank you so muchfor being here today.
I'm so happy to have you as aguest.
Sandy (01:49):
Oh, Gretchen, I'm thrilled to be here.
Thanks so much for inviting me.
Gretchen (01:53):
Of course.
Let's start at the beginning.
Take us back.
What inspired the creation ofDementia Friendly America?
Was there a defining momentthat set this initiative into
motion?
Sandy (02:08):
Well, for a stretch, and I have to say that when we're
focusing in on Dementia FriendlyAmerica, this is a
mission-driven initiative, andit's one that I am both
professionally as well aspersonally committed to.
So looking at this through theprofessional lens, you know, we
(02:29):
know that there are more than 6million Americans who are living
with Alzheimer's, but we alsoknow that there are between the
ages of 75 and 84, 13% ofAmericans who are living with
dementia.
And that number rises to 33%when we're looking at people
(02:50):
over the age of 85.
Wow.
Couple that, those numbers,which are staggering, with the
fact that over 11 millionAmericans are providing unpaid
care to people who are livingwith dementia.
And when we're looking atpeople living with dementia,
oftentimes people think thatthey're living in nursing homes
(03:12):
or some other type ofinstitutional setting.
But the truth is 80% of peopleliving with dementia are living
at home and in the community.
So responding to the needs ofpeople living with dementia and
their care partners is reallycritical.
And that's what DementiaFriendly America is all about.
And as I mentioned, personally,my mother had vascular
(03:36):
dementia.
So I know the struggles ofpeople who are living with
dementia and their care partnersin navigating not just
services, but really just livingday to day at the community
level.
So because of both the personaland the professional commitment
that I have, And alsorecognizing the incredible work
(04:00):
which really spurredDementia-Friendly America, which
was learning from the work thatMinnesota had done through
their Act on Alzheimer'sinitiative, which was really
led, administered by a AAAtrellis in St.
Paul, and really It reallyincorporated AAAs throughout the
state and communitiesthroughout the state.
(04:22):
And in looking at the impactthat that initiative had on the
lives of people living withdementia and their care
partners, there were a number ofnational organizations that
came together and said, we needto replicate the Act on
Alzheimer's model at thenational level.
You know, a variety of nationalorganizations, aging
organization, Alzheimer'sorganizations, chiefs of police,
(04:46):
local governments, pharma,people all over the spectrum of
organizations, public andprivate, came together and said,
we need to make this a nationalinitiative.
And so at the White HouseConference on Aging, and 2015,
it was announced DFA was adoptedas a national dementia friendly
(05:08):
initiative and US Aging was sopleased and honored to be given
the opportunity to administerthis national initiative.
So that's how we got started.
And we're just about to reallyrealize our major anniversary in
2025.
And with this commitment tomake this a national initiative,
(05:33):
a national movement to ensurethat people who are living with
dementia can thrive at thecommunity level.
And that's what DFA is allabout.
Gretchen (05:43):
People want to get involved and they want to bring
it back to their local area andThey can probably do some
customizing, which we'll have totalk about so that it really
meets their individual uniquecommunity needs.
And I'd love to hear more aboutthat in a minute.
We've been sharing on thispodcast series that we're doing
about how ageist stereotypescreate barriers for older adults
(06:07):
so that it makes it moredifficult for them to age well.
How does an initiative likeDementia Friendly America break
down those stereotypes, do youthink?
Sandy (06:19):
Well, Gretchen, as you know, that when we're looking at
the issues of aging and ageism,it's really prevalent when
we're talking about looking atpeople's thoughts and
impressions and the stereotypespeople have of people as they
age.
But that's intensified whenwe're really looking at people
who are living with dementia.
(06:40):
And the barriers that are putup, even before a diagnosis, but
when people get a diagnosis ofdementia, it is amazing.
And I can talk about this bothpersonally again and
professionally, where peoplewalk away from people who have a
diagnosis of dementia.
(07:00):
That all of a sudden, insteadof looking at dementia as a
journey, which can last years,people immediately go to that
end of life perception ofsomeone who is living with
dementia and they startdiscounting them.
They think of them as lesscapable, as frail.
(07:21):
They think only of declininghealth and immediate declining
cognition.
And because of that, that tendsto make the individual with
dementia socially isolated.
know friends step awaydifferent groups that they were
involved with don't necessarilyaren't as quite as welcoming and
(07:45):
part of that is based on fearand that fear is based on not
understanding um the whole scopeof dementia which again is the
goal of dementia friendlyamerica and dementia friends is
to create an understanding ofwhat people, the journey of
(08:05):
dementia and what people who areliving with dementia go through
and how best to support themand their care partner.
Gretchen (08:13):
really a unique concept, I think.
We in the aging world talk alot about individuals needing
services and supports.
And we also, of course, provideall of those services to
caregivers.
And we're always talking aboutthe value of the caregiver.
But I like the way this kind ofturns it and opens up the
(08:35):
intervention to all of us.
We're all a part of thisstrategy, right?
The whole community needs toget involved.
It's not just the individualwith dementia.
It's not just their family andtheir caregiving team.
It's all of us.
We can all contribute to this.
We all have a role to play inmaking our world better for all
of us.
(08:55):
And it seems like that's reallywhat you're describing here.
Sandy (09:00):
You know, Gretchen, you've nailed it.
That's exactly what we'redescribing.
And again, from a personalperspective, when I was on the
journey with my mother who hadvascular dementia, as an aging
professional, I could navigatethe services that she needed.
What was very difficult for meto navigate was taking my mom
(09:22):
out into the community.
At that point, my children wereyounger, so I was dealing with
my mom and also with mychildren.
And going out into thecommunity to a grocery store,
going into the bank, trying tofind a hairdresser who could
understand what she was goingthrough and also what I was
(09:45):
going through, to be able totake her into a doctor or a
dentist and realize that sheneeded a different level of
support in those types ofsettings.
So that's what DementiaFriendly America is all about.
It's looking at the wholecommunity and how the whole
(10:05):
community can come together tosupport someone who is living
with dementia and theircaregiver.
Gretchen (10:11):
Wow.
That makes a lot of sense.
I love that.
So looking ahead, what's yourbiggest hope for Dementia
Friendly America?
What legacy are you hoping tocreate?
Sandy (10:23):
This will make Mary nervous, but I want every
community in the country to be adementia friendly community.
I want dementia friend trainingto be part of what all
communities offer.
I would love to see dementiafriend training in the school
systems.
I think that as we look atplanning for communities, it's
(10:46):
not just planning for anage-friendly community, it's
planning for a dementia-friendlycommunity.
Gretchen (10:53):
Wow, that's a big dream.
I love
Sandy (10:56):
that.
It is a big dream.
It is a big dream.
But as Mary will highlight, weare well on our way with having
state leads around DementiaFriends.
And also in looking at theopportunity that we have with
over 400 communities alreadyinvolved.
And we almost, you know, we'regetting close to over 200,000
(11:19):
Dementia Friends.
So we are well on our way.
We've got a lot of momentum.
And it's It's up to us all toensure that that momentum
continues.
Gretchen (11:30):
Yes.
And so what do you think we canall do to help you in this?
The last question I was goingto ask you, Sandy, is about
public policy and advocacy work.
What can folks do if they wouldlove to see this spread and
they want their community tohave this?
What policy changes do youthink we need?
Sandy (11:52):
Well, I am hoping that at the community level that we ask
questions of our local electedofficials, our state officials,
and our national officials.
Given the statistics that Istarted out with about the
prevalence of dementia incommunities across the country
is...
We ask the questions, whetherwe're doing planning for, or
(12:16):
zoning or, you know, where aresupports that other supports at
the community or state level andnational level, as well as how
is this going to impact peopleas they age?
How is this going to impactpeople who have dementia?
And you can add on otherchronic conditions as well.
(12:37):
And what can we do to supportthem and their caregivers?
So it's a filter that we shouldhave to be able to ask the
question and raise the issuethat that as people age, we need
to be able to, again, value andsupport them as people get a
(12:58):
diagnosis.
And we do hope people aregetting diagnosis of mild
cognitive impairment ordementia, that it's not as it
was before.
In some cases, people thought,well, that was it.
You know, let's close the tent.
No, it's like, Now what?
Now what's available throughthe Area Agency on Aging,
(13:22):
through the Alzheimer'sAssociation, looking at what we
can collectively do together tobe able to respond to those
needs.
And policy is going to play animportant role in that.
But for policy to play animportant role, people need to
advocate.
You need to advocate for aging,And you need to advocate for
(13:46):
ensuring that people who areliving with dementia, again, 80%
at home and in the communitylevel, are able to thrive at
home and in the community.
I
Gretchen (13:58):
love that.
you talked about this as beingsort of a mindset change, right?
We need like a new filter tothink about people with dementia
and other chronic conditions.
And it kind of reminds me ofother accommodations that we do
in our community for people whohave any kind of challenge,
(14:19):
right?
So when they decided that itwas going to be required to put
cutouts in the sidewalk forpeople who needed to use a
wheelchair, that also becomesconvenient for the rest of us,
for parents who are pushing astroller, for people who are
pulling their groceries, forsomeone who's riding a bike and
needs to enter onto thesidewalk.
It became an accommodation thatwe all could enjoy.
(14:40):
And I think what you'redescribing is something that can
make life better for all of usin the community.
Some of the adaptations and thelittle tweaks and changes to
how we do things for someonewith dementia can be helpful for
people with other kinds ofdisabilities, maybe people with
developmental disabilities orpeople who are visually impaired
(15:01):
or hard of hearing, some ofthese things will be helpful for
many people, even for theperson next door or for you and
I.
There can be things that justmake life better.
And so I think we should all beembracing this to have a more
inclusive society.
This is a really neat work thatyou're doing.
Sandy (15:18):
Christian, I absolutely agree, and I love what you said,
which is true, and we foundthat true about age-friendly
communities.
A dementia-friendly community,and one of the examples I'm sure
that Mary will highlight iswhat we found with
dementia-friendly businesses.
There are so many simple thingswe can do that, again, make
(15:39):
life better for people livingwith dementia, but also make
life better for all of
Gretchen (15:46):
us.
Right.
So that's just one more reasonthat every community needs to
get on board with this.
And that's probably a goodselling point for it too.
And you can talk about how ithelps everyone, right?
Wonderful.
Thank you so much for sharingyour thoughts and your vision
for the future and ways that wecan all get involved in this and
advocate for aging and advocatefor people aging with dementia.
(16:07):
I really appreciate that.
Before we continue thisconversation, a quick note.
We have a couple of excitingopportunities coming up for you
to meet and mingle with ourincredible show guests.
First, we're honored to haveSandy Markwood as our keynote
(16:31):
speaker at AgeGuide's annualmeeting and luncheon on Friday,
April 25th, 2025 in Lombard,Illinois.
You can register on theAgeGuide website to come here
and meet Sandy in person.
Second, US Aging just happensto be hosting their annual
(16:52):
conference and trade show righthere in Chicago from July 20th
to 23rd.
If you've been inspired bySandy's insights on
dementia-friendly communities,you won't want to miss this
event.
It features a range of workshoptopics on aging, advocacy, and
(17:12):
community-based services.
Registration opens April 7th,so mark your calendars and get
ready to join leaders,innovators, and change makers in
the field of aging.
We have a link to the webpagein the show notes.
Let's turn it over to you now,Mary.
You are at the implementationlevel of this, I presume, and
(17:37):
can give us a little bit more ofyour thoughts on this.
Let's start with, can you giveus a dementia-friendly
definition, kind of an overviewof exactly what it means and
what it is?
Mary (17:51):
Absolutely.
And thanks for having me,Gretchen.
It's a privilege to be here anda privilege to do this work.
As a former caregiver for mygrandmother, who I cared for
when I was a teenager and wedidn't call it dementia.
And now we've moved to beingable to talk about dementia for
my in-laws.
(18:11):
It's been wonderful to be partof this work and see the
progress being made in terms ofreducing stigma and resources
available.
So I've been able to see theproof in the pudding.
You're
Gretchen (18:26):
right.
There's been some real changeabout even being able to talk
about dementia, right?
Mary (18:31):
Yeah, absolutely.
Absolutely.
So to kind of sum up theexamples that Sandy gave and her
experience as a caregiversupporting a loved one with
dementia, we define adementia-friendly community as a
village, town, city, or countrythat is informed, safe, and
respectful of individuals livingwith dementia, their families,
(18:53):
and their care partners, andprovide supportive options that
foster quality of life so thatthey can live and engage in
community.
They can remain in their homesfor as long as possible, knowing
that they're surrounded bypeople that are helping make
that possible and helping makeit possible for their care
partner to enter into communitywith their loved one, knowing
(19:15):
that they will have addedsupport and they won't have to
face some typical challengesthat they may face going into
the grocery store or the bank,like Sandy mentioned.
So it's kind of pulling all ofthose sectors together.
So we have learned very quicklythat providing supports in the
(19:36):
community and embedding those incommunities that people can
live and work, engage and thriveand are able to remain in their
homes longer.
As Sandy mentioned, the exampleat the grocery store, you know,
at the bank, you know, goinginto a faith community.
And that's often where much ofour work will start in our
communities because that's, youknow, a place of safety for many
(19:58):
people and a place of routinewhere they go for that comfort.
But that can become a challengeas dementia sets in.
And so we have sector guidesfor various sectors in the
community that gives specificexamples of practices that they
can implement in their sectorthat would allow for a more
(20:19):
welcoming environment for peopleliving with dementia and their
care partners.
You know, in a faith community,for example, a shorter service,
more familiar songs, you know,on a simple song sheet that a
person living with dementia canfollow along.
Somebody escorting them, ifthey are living alone, or if a
care partner can't go, avolunteer from the community to
(20:42):
sit with them, to help themfollow along, help them sing
along, name tags, some verysimple steps that sectors can
take to make their their sectormore welcoming.
Gretchen (20:55):
So that gets us back to the question that came up
initially for me, which was howcan communities kind of
customize this for their ownunique needs?
Each community, as you know, isso different.
So are they able to just kindof make their own plan based on
what they need and whatresources they already have
(21:16):
available in their community,what maybe some of their
specific challenges are?
Mary (21:21):
Absolutely.
That's the beauty of this workis that it is flexible.
So we have customizableresources.
So our sector guides, has somestandard information, but then
an area where communities caninclude their local resources on
that guide.
As long as, and I failed tomention this earlier, that they
(21:43):
are including people living withdementia and care partners in
the process.
So that is one of our keyrequirements for this work and
for creating an action team isthat it's being informed by
people who are living withdementia and their care partners
because they know the true needand what they would like to see
when they walk into the grocerystore, when they walk into a
(22:03):
bank, when they go to theirplace of worship.
Gretchen (22:07):
That's really unique.
And that would be a hands-onexperience in becoming dementia
friendly as you try to involvefolks with dementia in the
planning process and in thedecision making.
Gives everybody that exposureand that experience and probably
breaks down some of those fearsyou were talking about too.
Mary (22:23):
Absolutely.
I think it's an example rightthere that of what people living
with dementia can do and cancontribute.
You know, I know how I want tobe received when I walk into the
grocery store.
I know how I want people torespond when I might be
struggling to find something ornot really sure what I came in
(22:44):
here for.
I want people to, you know,respond with respect and not shy
away from recognizing thatthere's something going on here.
And, you know, how can I besupportive?
I didn't mention earlier abouta new initiative that is now
falling under Dementia FriendlyAmerica is the Memory Cafe
Alliance.
And when we talk about ageismand what older adults are
(23:10):
capable of, I think the MemoryCafe captures that very well.
There are opportunities toengage and opportunities for
care partners and their lovedone living with dementia to
engage together and enjoy anactivity together so these
memory cafes are wonderfulopportunities and often are
included in our dementiafriendly community efforts is
(23:34):
starting memory cafes and theyusually include an art activity
music some kind of funengagement for people living
with dementia and their carepartners and and that's been um
That's been a huge asset to ourteam.
We have a memory cafe directoryon our website now so that
people can put in their zip codeand find memory cafes near
(23:58):
them.
And here are opportunities toengage.
And in dementia-friendlycommunities, we are working to
create opportunities wherepeople living with dementia can
engage.
You know, movies where thelights are kept on.
And there's a restroom breakmidway through.
You know, restaurants likeSandy mentioned, a quiet space
(24:22):
in a restaurant.
And that's, like you said,often people living with autism
are looking for a quieter placein a restaurant.
So it serves many people withjust some very simple changes.
And so we know that thatcreating these communities where
people can live, engage, andthrive benefits all.
It really, you know, it can bea focus on dementia, but in the
(24:45):
end, it's, as my son would say,so isn't it just about seeing
people and being nice?
And I was like, well, it is,you know, there is a lot to
that.
It is about seeing people,recognizing a need, and
responding to that need.
Gretchen (24:58):
And You know, you've mentioned it a couple times.
There's definitely a stigmaaround dementia.
There's a lot of fear of notunderstanding it or not knowing
how to respond or what if I saythe wrong thing or come across
the wrong way or I don't knowwhat to do.
So there's that fear component.
It seems like there's a lot ofintersectionality with that and
(25:20):
ageism, right?
Ageism comes, I think, from amisunderstanding or some
misguided notions of what itmeans to get older and some
stereotypes that we have.
And we also have a lot ofstereotypes around dementia.
And there's some intersectionwith that.
Sometimes people think thateveryone who's old has dementia.
Sometimes people think thateverybody who has dementia must
be old.
And neither of those two thingsare at all true.
(25:43):
But we kind of categorize themtogether.
So that's why I think this issuch a great topic to talk about
in this podcast series wherewe're focusing on ageism because
of that layering and thatintersectionality between
dementia and ageism.
So I wonder if you have anyother specific thoughts on how
to kind of enhance ourunderstanding of both of these
(26:05):
things and support individualsliving with dementia and their
caregivers, as well as combatingageism.
Mary (26:14):
You know, I think Sandy made a very good point about
just the seeing the value andworth in older adults and people
living with dementia.
There's still so much they cando and want to do and want to be
engaged in and want to wake upand have a purpose and a place
to go and a place to engage.
(26:35):
And I think an example of thatIt is difficult to choose just
one story.
We hear testimonials every dayof the impact of our work on
those not living with dementia.
And this impact, which hasoften increased awareness and
understanding, has the veryimpact on those living with
dementia that we had hoped forwhen we launched DFA.
One particular story that comesto mind is from years ago when
(26:59):
I attended a dementia-friendlycommunity kickoff meeting on the
East Coast.
And that's something we oftendo.
We're invited to kind of do thelaunch of a community
community-wide initiative andshare information about what's
happening at the national level.
And it's really an honor to beinvited to those events.
And at this one, there were anumber of presenters, leaders
(27:21):
from various sectors committingto engaging in the effort.
And I shared my generalinformation.
And then what they often doduring a kickoff meeting, which
we recommend, is having a personliving with dementia share some
of their experiences And inthis particular case, the person
(27:42):
living with dementia was a manwho was in his 40s living with
dementia.
And he gave, you know, just areally compelling story for
anyone who may have questionedwhy this work is important.
And he shared some experiences,you know, on when he was
(28:04):
engaging in the community or outand about running errands and
really just brought it to lifefor many people.
And after the...
After the kickoff, I was justvisiting with people and a
gentleman approached me and Ishook his hand and I introduced
myself and he told me he was tooembarrassed to tell me his
(28:25):
name.
And when I asked him why, heproceeded to tell me that he
didn't want to come to theevent, but his boss told him he
had to, to represent theirbusiness.
And he didn't think it was atall relevant.
And why do we need to learnmore about dementia?
People with dementia won't bein our shop.
And, you know, it was a localgrocery store.
The reason he was embarrassedis that it turned out the man
(28:48):
living with dementia who sharedhis story was this man's
neighbor, and he confessed tonot being patient with him when
they would cross paths in theneighborhood.
He had no idea that this manwas living with dementia and
that he looked like a normalyoung guy, which, as we know
after our call today, thatthat's a common misperception
(29:09):
with people that they just haveone face when they think of
dementia.
And he went on to say that thisevent changed his entire
perception.
As it turned out, the manliving with dementia joined us
as we were wrapping up ourconversation.
And the embarrassed gentlemanintroduced himself by name and
(29:30):
told his neighbor that he wassorry for his ignorance and that
he had learned a lot todayduring that presentation.
And they hugged.
And, you know, it was just...
a real tender moment, I think,for both of them.
I think validation to the manliving with dementia, but also
just...
I felt like it was anonjudgmental wake up to the
(29:55):
gentleman who did need to learnmore about dementia and the
faces of dementia.
And it was just, I would, youknow, certainly a humbling
experience, but also why DFA ishere, why we need to bring this
information to communities tomake our communities stronger
and friendlier for all.
Gretchen (30:16):
Yes, what a powerful story and a perfect example,
like you said, of why this is soimportant.
And I think I can totallyrelate to thinking about you
know, that I already know aboutsomething and I'm sent to go to
something by my boss and I don'treally want to go there.
And then you hear this kind ofinformation and you realize that
(30:38):
it impacts everyone and itimpacts you and it impacts
people that you know, and it canbe game changing.
So this training is just soimportant.
Thank you for sharing thatstory.
You're welcome.
It's a great example.
Mary (30:51):
Yeah.
Yeah.
It was a privilege to witnessthat.
Val (31:01):
Hello and welcome to your Medicare Minute.
My name is Val Guzman and I'mthe Benefit Access Specialist
here at AgeGuide.
A lot of people ask about whenthey can change their Medicare
Advantage plan.
(31:21):
The Medicare Advantage openenrollment period runs from
January 1st to March 31st, soyou still have time to enroll in
a new plan.
This open enrollment period isa little less known mainly
because it applies only topeople that are enrolled in an
Advantage plan as of January1st.
So you can either change to adifferent plan or you can switch
(31:45):
to original Medicare.
A good way to compare theseplans is by checking with your
doctors to see which plans theydo accept so you know which
plans to focus on just becausethere are so many plan choices
for you.
Then you can compare how muchthe plans cost and the extra
benefits that they offer.
(32:06):
If you enroll in a new plan, itwill take effect the following
month and it will cover you forthe rest of the year.
But feel free to ask a SHIPcounselor about your plan
options or go to our website atahguide.org for more
information.
Gretchen (32:25):
Thank you for listening to The Age Guide,
Perspectives on the AgingJourney.
Age Guide coordinates andadministers many services for
older adults in NortheasternIllinois.
Our specially trainedprofessionals are available to
answer questions and connect youwith local service providers
and resources.
If you are interested in theseservices or want to learn more,
(32:48):
go to our website atageguide.org.
or call our offices at630-293-5990.
Please follow our podcast soyou can be notified in your
streaming account.
Thank you and we will see younext time on the Age Guide
podcast.
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