Learning about Dementia

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Welcome to the

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Beyond Ordinary Women Podcast.

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Every two weeks, we post podcast versions
of one of our free training videos.

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Or you can access our videos now

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at BeyondOrdinaryWomen.org.

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Enjoy the podcast.

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Welcome everyone to the Beyond
Ordinary Women Podcast.

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I'm Kelly Arabie
and today we are talking with Ann McKinley

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on Learning About Dementia.

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Ann works with the Juliet Fowler
Communities in East Dallas,

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leading their citywide initiative,
Dementia Friendly Dallas,

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committed to empowering those affected
by dementia.

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Ann, welcome.

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So glad to have you here.

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Thank you so much, Kelly.

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Tell us, how did you find yourself
in this arena for ministry?

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Well, as you said,
I work for Juliet Fowler.

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I've been in the senior living community
for over 20 years.

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And so of course I have professional
experiences with helping families.

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But it was through
my own personal experiences that I found

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the Dementia Friendly Initiative.

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I'm a daughter of dementia.

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Both of my parents had dementia
and that did not preclude me.

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My professional experiences
did not preclude me from being that

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daughter who was googling at night
and looking for answers and responses.

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We in our family really
thought we had all our ducks in a row.

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My husband's an attorney.

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I have a sister who's a doctor, another
sister who's a nurse married to a doctor.

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So and I'm in the senior living business.

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We thought we were prepared
and had it all already.

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But dementia doesn't follow your plan.

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So I found Dementia Friendly America

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and recognized that that was something
that could be helpful to our community.

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It made me realize that there were gaps
in understanding

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and gaps in services that existed.

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And I felt like at some point in time,
that was something

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that I wanted Juliet Fowler to get behind.

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And so within a short time they did. And

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here we are.

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So let's talk a little bit,
say more about the gaps in understanding.

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Could you help us understand a little bit
what is dementia?

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Yes.

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Well dementia is a term.

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It's an umbrella term that describes--not
the diseases.

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It's not the disease itself,
but it's an array of symptoms.

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The symptoms of cognitive function.

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So it's not just memory loss.

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People think immediately of memory loss.

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But it's not just memory loss.

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It can also be vision.

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It's communication. It's mobility.

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It's depth perception.

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It's a lot of different things
that are all managed by the brain.

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And so when a dementia impacts your brain,

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all of those functions are impacted
as well eventually.

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So say more
maybe about the symptoms of dementia.

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Those are some broad.

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They are broad and there's

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actually many medical conditions
that can cause dementia.

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And so the first thing
a person really should do is

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we have to be very honest and upfront
with our own physician.

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When we start recognizing a difference
in our own self,

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we need to have those conversations
because there are reversible

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medical conditions
that can create and can mimic dementia.

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So first
you got to know what you're dealing with.

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Alzheimer's is the most prevalent
of the dementias.

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It's actually they estimate 60 to 80%

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of your dementia falls
in under the Alzheimer's bracket.

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But some of the other dementias
are frontotemporal, vascular dementia,

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Lewy body dementia and Parkinson's
can have a dementia aspect.

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I'm going to speak to the signs
and symptoms specifically of Alzheimer's,

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because 60 to 80% of our diagnoses

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are attributed to Alzheimer's disease.

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I also want to point out that not everyone
that receives the diagnoses

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is going to experience the same symptoms,
and they don't go in any specific order.

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So some of those symptoms might be memory
loss, specifically

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recently learned information.

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So your short term memory
loss, the inability to plan

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and execute or solve a problem.

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So our executive function
can be inhibited.

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Vision changes and not the type of vision
changes that are cataracts or,

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you know, normal macular degeneration,
not that type of thing.

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I'm talking about the inability
to see depth perception,

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to distinguish colors, confusion

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about time and place, communication,

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having a problem remembering words,

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being able

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to string words together
to create sentences, understanding

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what is being asked,
and then the ability to respond.

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So those are just some of the most common
signs and symptoms of Alzheimer's

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and of course, change in personality
and behaviors.

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That's something
that some people experience as well.

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So you've talked

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about various symptoms of dementia

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and the symptoms of Alzheimer's.

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How can you know what you're dealing with
or what is a family in your experience?

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What does a family do
when they see symptoms

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and they're not really sure where to go?

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Well, I think the first thing you do is
you talk to your primary care physician.

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A primary care physician needs to rule out
anything that is medical

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beyond a diagnosis
of a long term dementia,

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because medication mismanagement,
depression can mimic dementia.

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There's a lot of different things
that can mimic dementia.

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So your primary care
physician is going to rule that out.

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They're going to run the tests
or do whatever is necessary to rule out

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something that's treatable,
something that's reversible.

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Then they will refer you
to a neuropsychologist

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who will do an entire array of tests.

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And the tests are first off,
we don't have, in my opinion,

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we don't have enough neuropsychologists.

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And so it can take time to get in
to see a neuropsychologist

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to do the testing
and to get that very specific diagnosis.

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And then your physician,
the Alzheimer's Association,

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Dementia Friendly Dallas,
there's a lot of resources.

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We are very fortunate that we live in
a city that truly is rich with resources.

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And so the resources are there.

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Dementia Friendly Dallas is trying to do
is bring an awareness to our community.

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It's not about when are you going to

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be impacted

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or when will dementia
stand in front of you?

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It already is.

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It's all around us.

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It's in our businesses, it's in the
grocery stores, it's in our neighborhoods.

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It's walking down the street,
you know, it's in the pews of our church.

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So we as community members are called to

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to be friends, to be dementia friends.

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And that's what the Dementia Friendly
Dallas movement is about.

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We our goal is for

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our city to be a place

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where people can live, age and thrive.

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And we don't usually equate

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dementia and thriving.

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You don't.

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We don't think about that.

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A person who has a dementia diagnoses
can live with dementia up to 20 years.

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I mean, there are
people are known to have it for 20 years.

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And that's a big chunk of our life.

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So that's why it's really important that
we with healthier brains can recognize

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and have the tools and know how to adapt
for that person who can adapt.

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Their brain won't let them adapt.

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They don't have the ability to change
what they do and what they say

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and how they're acting
and what's happening to them.

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And it's kind of like when you go bowling
and they put those bumpers,

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you know, to help get the ball down.

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The, you know, so you don't gutter
your ball.

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We're the bumpers.

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We're the bumpers
for people with dementia.

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How does someone

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thrive with dementia?

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Great question.

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We participated in a panel
several years ago

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of spouses with all the spouses
that were care partners were working,

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and all the spouses with dementia
were younger.

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And we asked them,
what do you need the most?

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And they said, “We need things to do.

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We need our friends.

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We need opportunities to have purpose.

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We need opportunities to volunteer.

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Our lives are not over,
and we still want to live productive,

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thriving lives.”
Because we believe there's such a stigma

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associated with this disease,

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that's what isolates people.

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People become isolated

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due to the lack of knowledge on the parts
of the rest of this community.

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And also because there's such a stigma,
people hide themselves.

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They're not as open to share
with their friends.

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I've seen this happen in multiple ways,
and I think the person that thrives

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is the person that lets
their community, lets their tribe know.

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“I've had this diagnosis.

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This is what I'm experiencing.” And you're
really walking it with that person.

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And the more open a family can be
and a more open

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the person that's received the diagnosis,
the more open they are

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with their community, I think the better
they're going to thrive.

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But purposeful interactions.

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It really saddens me when I hear that

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friends no longer invite them to parties

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because I don't know how the person
with dementia is going to act.

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Or they're no longer invited to play golf
because

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they can't fully they can't count

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all their strokes, whatever, you know.

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Being the friend
that recognizes and anticipates

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and recognizes that this is a disease.

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You know, it's let me put it another way.

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This is like an invisible disease.

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You can't look at a person with dementia
and know they have dementia.

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You can look at a person with cancer
and notice that they've lost their hair.

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You can look at a person
that has got a brace or, you know.

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There's so many other things that
you can see and this one you can't see.

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And it's so gradual
and it happens over a long period of time

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that people just withdraw from associating
because I don't know what to do and say.

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So it's just easier to not be there.

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We're challenging people to be there,

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to be there.

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This is a culture change. To be present.

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To be present, to maintain the community.

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And that's how a person thrives.

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I know for my in my own circumstances,
my dad was a volunteer.

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He was an active volunteer.

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And so we had to find ways
for him to volunteer.

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And because we understood
that a person with dementia can maintain

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procedural memory, we thought of ways
that we could tap procedural memory.

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So he had been a volunteer
at the VA hospital for years and years,

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and he would clean and repair wheelchairs.

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So when he was in the senior community,
the rehab department

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would bring my dad down and let him--and

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please know that they could have cleaned

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those wheelchairs in
ten minutes had been done--but

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they took the time to bring him down
and let him work

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with them to clean the wheelchairs
and test the wheelchairs.

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And that took twice, if not, you know,
triple the time for them to do that.

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But that was very important to him.

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It fed his soul.

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It fed who he was.

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Efficiency and time are not God's
highest priorities.

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They are not. They are not. Yeah.

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And then we realized that
that was beyond his scope.

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So then we started stuffing bags
for the homeless shelter

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because Dad could sort
and he could very methodically

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get the toothpaste, the toothbrush,
the soap, you know, whatever.

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Put it in the Ziploc
bag, seal the Ziploc bag,

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you know, and he would sit there for hours
because he had purpose.

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We put purpose in his day.

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So remembering that a person with dementia

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can't just sit there
and look at a TV and watch movies.

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Right. Right.

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That interaction, that social interaction,
and in fact,

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the social interaction
helps preserve the brain.

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Absolutely. Yes.

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Yes. God made us to be in community.

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Yes he did.

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He made us to be in community.

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And that doesn't end.

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That doesn't end when disease impacts us.

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That's right.

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There are many challenges
that a family faces

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when they're impacted by a loved one
who has dementia.

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And there are many challenges
that the individual faces themselves.

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You know, so much loss.

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What have you seen in either
your experience

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or the experiences of those you've worked
with?

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Particular challenges

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that we should just be aware of?

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Well, your care partners need an outlet.

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They need support.

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They need friends
that really check in on them,

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that don't just say, “Well,
let me know what I can do to help,”

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but are very specific with their needs.

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I read a book years ago about

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dementia in the church, and a man

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described said that

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he and his wife were classified
as a shut-in.

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“And in fact,” he said, “we're not shut
in, were shut out.” And he spoke

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about the actions
that their specific Sunday School class

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took to help and to support, all because
one person noticed their absence.

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So being aware of the people that are
no longer sitting next to us in the pews,

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being aware
that someone is not there, being very

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persistent and active with

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the needs,
and recognizing and calling people

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that we know
haven't been in church for a while.

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Keeping people safe and welcome
is our ultimate responsibility,

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and these small acts of hospitality
make an enormous difference.

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Yeah, I'd love to have a conversation

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about what
the church can do to support dementia.

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It sounds like there are a lot of
opportunities and perhaps we can come back

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and have a conversation about that
a little bit later.

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That would be wonderful.

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What else would you like our audience

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to know about dementia and

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people who

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you know they love
who are impacted by this?

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There's just
there is a deep lack of awareness,

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as you've no doubt encountered in people
just not understanding

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what the diseases are.

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And I mean, I'm just learning from you

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that there's more to it
than just Alzheimer's.

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Dementia Friendly
Dallas does a one hour session.

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It's called Become a Dementia Friend.

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And in this dementia friends’ session,
we talk about the ten signs and symptoms.

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We talk about how two parts of the brain
interact and engage the amygdala

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as managing our emotions.

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And our hippocampus manages
the facts and figures of our life.

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And how those interact and engage.

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And how when the hippocampus gets hit
with dementia, it becomes very confusing

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to a person with dementia

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because they're holding on to feelings
and they don't have anything to relate

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it to.

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And then we spend a good bit of time
with communication.

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We want people to take what we teach.

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It's just one hour but we jam pack that

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with some very useful tools
so that people can be in the community.

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When we're giving people the ten signs
and symptoms that speak for a couple

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of different reasons,
we want people to be able to recognize

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that the person that they're speaking with
may have dementia.

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We're not trying to diagnose a person.

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It's just to have an awareness.

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This person may have dementia.

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I may need to use a tool that I
that I have in my tool belt.

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We also want people to increase
their empathy and to have an understanding

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that this is a disease and
this is what this person is experiencing.

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And when we have that knowledge,
we approach people differently.

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We change our expectations.

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It's important that we change
our expectations of the people

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that we are interacting with
when we recognize that they have dementia.

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And so through this one hour course,
we are creating dementia friends,

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and we really believe that we are going
to change this world one friend at a time.

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I love that, I love that.

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That's beautiful.

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Is there anything else that you would like
to share about Dementia

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Friendly and your goal?

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How to register for your education?

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Yes, we have a website.

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It's DFDallas.org

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and so you can learn more about what
our Dementia Friend initiative is.

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We have a dementia
friendly business initiative.

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So and we have a dementia
friendly faith community initiative.

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And we have another initiative
that is called Dementia Friendly Engage.

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And Dementia Friendly Engage

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came about really after the pandemic
because prior to the pandemic,

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there were many opportunities
for engagement for people with dementia.

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And throughout the pandemic,

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like everything else, they shut down
and they didn't come back.

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So we felt it was really important for us
to shine a light on those opportunities.

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And we have toolkits available
for people to create memory cafes.

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We have mentors
that can help start a respite program.

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So personally,
I believe if you are breathing,

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you should be a dementia friend.

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So that's all I do is right.

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Everyone should have this knowledge.

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If it's not in front of you
right now, it will be.

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And children are amazing
with people with dementia,

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so we shouldn't shy away
from exposing our children

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and giving our children
the opportunity to nurture and to shine.

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The intergenerational component
is so important.

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And then if you are any type of business
or organization

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that's engaging the public,
you should be dementia friendly.

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There are things even senior communities
have recognized things

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that they can do to modify,
whether it's their environment or,

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you know, a practice that they're using
and really have people in the room

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that say,
wait a minute, is this dementia friendly?

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Because if it's dementia friendly,
if it's good for a person

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with dementia, it's
good for everyone.

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Yes.

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So DFDallas.org is how you learn
more about dementia friendly.

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You can.

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We've got a calendar online
where you can see our upcoming education.

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We do virtual sessions.

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We have in-person sessions
that are routinely scheduled, and then you

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can schedule one for your specific group
or business or faith community.

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Okay. Okay.

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So how would somebody connect with you
if they're not in the Dallas-Fort

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Worth area?

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Well,

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they can always reach out to me,
and I can help direct them.

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But there's another website,
DFAmerica.org,

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and that's Dementia Friendly America.

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There is an entire list of communities
throughout the country.

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Almost every single state in our country
has some presence of dementia friend

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and dementia friendly initiatives,
and so they can reach out

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and find a person in their state
that can help them.

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And if it is not there,
be the person that starts it.

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Be the leader that wants
to pull this together for your community.

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Yeah.

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At Juliet Fowler we have a care philosophy
that's called I'm Still Here.

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And it's just a reminder for all of us
that the person that we love

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and the person that we know
is really still there.

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And while they may forget our name
and they may forget some

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very specific details,

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that love that they have in their heart
is still there.

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That person, if that person was
a musician, they’re still a musician.

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They still love music.

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And so when we can remember that
that person is still there, we need to

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continue to tap in and

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treat them with the dignity

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and the respect
that we've always treated them with.

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Yeah.

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Yeah.

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00:21:40,200 --> 00:21:42,040
Well, thank you, Ann, for being with us.

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This has been so helpful,
and I look forward to having you back

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and talking again about ways
that we can minister

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to families with dementia
or those with dementia, how the church

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can do a good job about coming

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alongside and loving well.

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Thank you for being here.

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Thank you so much.

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00:22:04,240 --> 00:22:09,840
And we'd love to direct our audience
to BeyondOrdinaryWomen.org.

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00:22:09,960 --> 00:22:13,240
You can find more resources
on caring well.

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00:22:13,920 --> 00:22:18,760
Go to the Resources tab on our dropdown
menu and select Caring Well.

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00:22:19,080 --> 00:22:22,280
You can find other podcasts and videos

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00:22:22,280 --> 00:22:26,000
that are able to support you in caring
well for others.

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00:22:26,000 --> 00:22:27,400
Thank you for joining us.

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00:22:28,040 --> 00:22:31,400
Thanks for listening to the
Beyond Ordinary Women Podcast.

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00:22:31,920 --> 00:22:35,920
You can find more podcast episodes
and resources for women in leadership

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00:22:36,320 --> 00:22:39,800
by going to BeyondOrdinaryWomen.org.

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00:22:41,000 --> 00:22:45,120
This podcast is produced by
Beyond Ordinary Women Ministries.

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00:22:45,320 --> 00:22:47,240
Our production team includes

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00:22:47,320 --> 00:22:49,760
Evelyn Babcock, Kay Daigle,

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00:22:50,240 --> 00:22:52,960
Deborah Herring, and Sharifa Stevens.

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Theme Music "Back in Stride"

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by Don Miller used courtesy of Christine Miller.