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January 18, 2025 • 15 mins

Discover the transformative power of education and compassionate care with our special guest, Deborah Seelhoff on the Good Neighbor Podcast. Deborah, from Dementia Forward, unveils her decade-long journey in dementia care, emphasizing the urgent need for mandatory training for caregivers. She passionately discusses the unique challenges faced by families and care partners, underscoring the importance of understanding and compassion. Deborah's person-centered approach not only clarifies common misconceptions about dementia, but also revolutionizes how communities support those living with these conditions.

Meanwhile, Deborah, highlights the empowering role of education in community growth. Her experiences showcase how educational initiatives can be a catalyst for individual and collective development. We also celebrate the impact of local businesses and leaders, encouraging you to recognize and nominate your favorites. This episode promises to inspire you with stories of dedication and the undeniable power of education to drive change and foster empowerment. Tune in for an enlightening conversation that bridges healthcare and community spirit.

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Speaker 1 (00:00):
This is the Good Neighbor Podcast, the place
where local businesses andneighbors come together.
Here's your host, Lisa Swiftney.

Speaker 2 (00:12):
Hi everyone and welcome to episode number 135 of
the Good Neighbor Podcast.
Today I have with us DeborahSeelhoff and she is with
Dementia Forward.
How are you doing this morning,deborah?

Speaker 3 (00:25):
Doing great, thank you.

Speaker 2 (00:26):
Great.
Thank you so much for being aguest on our Good Neighbor
podcast my pleasure.
So let's start off by tellingour listeners about your
business.
What is Dementia Forward so.

Speaker 3 (00:39):
Dementia Forward.
As we know, dementia hastouched most of us in one way or
another, so Dementia Forward isa program specifically designed
to educate communities, familymembers, care partners in order
to give the person living withdementia the best care.
Dementia care is very differentthan elder care.

(01:00):
I do presentations at memorycare facilities, assisted
livings, in churches, incommunity centers and other
gatherings, because it seemslike I always find people that
have been touched by dementia,and I also do care partner staff
training because we want ourpeople to have the best care.

(01:21):
So yeah, so that's how this gotstarted people to have the best
care.

Speaker 2 (01:29):
So yeah, so that's how this got started.

Speaker 3 (01:31):
So tell our listeners about your journey.
How did you get started in this?
Well, I started working withpeople living with dementia
about 10 years ago.
I helped manage a small grouphome and there are six residents
living with dementia differentphases of dementia.
The more I spent with them, themore I became really passionate
about the people and I wantedto learn more and I also wanted

(01:54):
to educate myself and the carepartners.
So I'm a certified dementiapractitioner and I am also
certified as a positive approachto care certified dementia
trainer and that is through theTeepa Snow program.
So I did a lot of educating, Idid a lot of studying, so I
began training our care partnersand it was amazing because I

(02:18):
just trained a care partnerrecently.
She's been in memory care for 10years and what I taught her in
one hour, she didn't knowanything.
She didn't.
She knew.
Been in memory care for 10years and what I taught her in
one hour, she didn't knowanything.
She didn't.
She knew none of that.
So I saw the importance ofdementia education and right now
there is no regulation thatrequires care partners in memory
care to be certified.

(02:39):
They do not have to have anydementia training.
They do not have to becertified in any sort of
dementia care, which Wow.
So what I saw on my journey wasthat family members, when they
placed a person they didn't know, they know their person has
dementia, but what happens istheir relationship used to fit

(03:03):
together.
It was their mom or their wife,and so what happened was that
they didn't know how to interactwith their person anymore.
So it caused strain on therelationship.
People would say my mom doesn'tremember my name, you know, she
doesn't even know I'm here.
She didn't even talk to me, sowhy even bother coming?

(03:24):
So I'm here, she didn't eventalk to me, so why even bother
coming?
So I'm just gonna not come.
And everybody's sort of patanswer was I want to remember
them the way they were.
Well, you know they're not thatway anymore.
So it's sort of a shock whenyou find out that your person
does have dementia.
So, like I I said, it strainsthe relationship.

(03:47):
So this made me realize thatfamily members were sort of a
population that are left out.
You know, we train people totake care of them, but we don't
take care of the families.
And then they start Googlingand then they have no
information and it just sort ofstarted to collapse.
So I realized that I needed tohelp them because they're still

(04:11):
people, they're not patients.
There are people living withdementia so we also have to use
correct terminology and they'redoing the best they can.
They live in the moment, whichwe could all learn from at some
point.
90% of their behavior issomething we're doing wrong we
could be talking too loud, theymight be hot, they might be

(04:34):
tired and we're bugging them orthey might have a UTI.
So we have to really beperson-centered, focused, and so
that's kind of how ThriveAssisted Living came about was
because there's only sixresidents.
We have two caregivers to sixresidents from 6 am to 10 pm, so

(04:55):
they get a lot of personalone-on-one care and they're all
in different you know phases ofdementia, but they're some of
the most amazing people that Iknow the stories and the
connection you make.
But they know how I make themfeel and training care partners.
I mean they do some prettyintimate care.

(05:15):
So when you have someone who'snot quite aware of what's going
on and you start to do intimatecare with them or trying to, you
know, get them to change theirclothes, they're a stranger to
them.
So building that relationshipto care for them properly and to
find out, you know, what theirneeds are.
They'll tell you.
It's just that we have tolisten.

Speaker 2 (05:37):
Right, I think the listening part is so important.

Speaker 3 (05:40):
Exactly, exactly.
We don't tend to listen whenyou're ready to talk and we want
to get our task done.
So you know, hurry up, betty.
You got to get your dress forbreakfast.
Well, betty doesn't want to getup, so okay, right.

Speaker 2 (05:56):
Yeah, it doesn't matter.
So can you tell us about anymyths or misconceptions that you
hear about in your industry?

Speaker 3 (06:06):
Yes.
So a lot of times people mix updementia and Alzheimer's.
So what dementia is is thatdementia is an umbrella term for
brain failure, so we shouldalways use that terminology.
Now, underneath the umbrella isAlzheimer's, lewy body vascular

(06:28):
, frontal Parkinson's.
So there's a lot of things thatfall under that umbrella, which
is brain failure or brainchange.
So we have to be careful thatwe don't lump it in.
I'm not saying calling itAlzheimer's is wrong, but it's
very hard to get a diagnosis andin my experience with families,

(06:49):
just because you might know thename of the dementia, it
doesn't change how you're goingto care for them or how you're
going to build a relationship.
So I really don't focus ongiving it a name or a stage, I
just want to keep them buildingthat relationship.
The brain actually shrinks.

(07:10):
So I have a lot of photographsof the normal brain and people
living with dementia.
So when people see that as aphysical change, they go oh, I
didn't know that.
People think it's a memoryproblem.
No, it's brain failure and Irelate it to like heart failure.

(07:30):
People understand what heartfailure means, right, you know.
Resonate with them that that'swhat brain failure is.
So, for example, our brains arethe size of a lemon.
People living with dementia.
Their brain becomes the size ofa grape, so it shrinks about
one third the size, which againexplains, which again explains

(07:55):
the difficulties they have, thememory change they have, the
ability changes they have.
It all makes perfect sensebecause it's actually a physical
change.
We just can't see it.
We can't see our brains.

Speaker 2 (08:12):
So if we could, it would be a lot better.
Wow, and I think it's comingmore forefront as we're watching
celebrities get diagnosed, likeyou mentioned, you know, like
Louie Boddy with Bruce Willis,and we've all known Michael J
Fox has had Parkinson's for along time now.
Yes, yes.

Speaker 3 (08:33):
I think that's a good point, because we have to do
what's called person centeredcare.
We have to do our person rightby meeting their needs, knowing
their history, knowing what theyused to do as a job, so that we
can relate to them in themoment and not make them just a

(08:55):
task where you got to get up ata certain time, you got to get
dressed, you got to eatbreakfast, you got 15 minutes.
Then we got to do this.
They enjoy routine, but there'sno rush.
You know it's their day and wefind moments of joy in the most
amazing places.
So that's what I'm trying toportray to the families is that

(09:15):
you can still have a reallyamazing relationship with your
person.
For sure.
That is good yeah.

Speaker 2 (09:22):
So let's just change this a little bit.
When you're not working on yourbusiness, what do you like to
do for fun?

Speaker 3 (09:28):
Well, I love to travel and I will explain more
of that in a minute.
Um, I love to travel, I love tobe outside of my comfort zone
and, um, my partner lives inCanada, so I have the
opportunity to go to see himevery once in a while.
In Canada is amazing place.
Um, I have two granddaughterswho live in Wisconsin and they

(09:52):
are the love of my life.
I didn't think I wanted to be aNana, but I love.
I love being a Nana.
It's a whole different kind oflove, oh, it is.

Speaker 2 (10:01):
And.

Speaker 3 (10:01):
I know why you don't have kids when you're older
because I'm exhausted, you know,and I have the privilege of
living on a lake, so I do a lotof kayaking and boating and you
know, I just have a beautifulhome where I can really stay
focused and.
I get to center myself, sothat's a privilege that I have.

Speaker 2 (10:22):
That is great.
Can you describe one hardshipor life challenge that you rose
above and can now say because ofthat challenge that you're
better for it and or stronger?

Speaker 3 (10:38):
Yes, I can.
So I met my husband in 2014 andwe got married in 2015 and he
passed away one year and oneweek after our first anniversary
.
So, unfortunately, he wasdiagnosed in the beginning of a
relationship with brain cancer.
So that was a very bigchallenge.

(11:02):
I was his care partner.
We lived in Chicago part of thetime and it was funny because I
could compartmentalize it.
While it was going on, I reallyfocused on him.
It was.
It was a challenge I didn'texpect and I realized that there
is such thing as you know, thelove of your life and love at

(11:23):
first sight.
So I realized too, life isprecious and don't let anger or
hurt stop you from loving otherpeople and treating them well.
I mean, he wasn't always greatto be around, so because of this
journey, I've become unafraidto confident in you know what I
know, and I really have apassion about wanting to share

(11:45):
this information with people.
I want them to have the bestlife people living with dementia
and their families because I'veexperienced it with them and
that's been the privilege andlearning how to live in the
moment Right.

Speaker 2 (11:58):
Yeah, that is great.

Speaker 3 (12:00):
What a story so it was us, I was us.
I didn't plan on that, but itdefinitely strengthened my faith
and it really gave me aninsight of what's important and
just to leave the rest of itaside.

Speaker 2 (12:18):
What is one thing that you wish that our listeners
knew about your business?

Speaker 3 (12:24):
Well, I wanted to make it very personal and
something that meant somethingto me.
So when I was trying to come upfor a name of my business, I
decided that one of the mostlife-changing things in my life
was that, in 2018, I walked tothe Camino, which is from France

(12:44):
to Spain.
It took me about six weeks andit was 500 miles.
Wow, I walked every day, andwhen you're on the Camino,
there's a symbol that's ascallop shell.
You get one at the beginning ofyour journey and that's what
you follow along the way.
And so what I realized was thatevery day was something new

(13:08):
People you met, places you saw,and I was way out of my comfort
zone, but all you could do wasmove forward.
You didn't ever look back.
It was one of the mostrewarding experiences because I
was actually present and I can'texplain how life-changing it is
, and so I kind of trulyunderstand what lives in the

(13:30):
moment.
Um, and just moving forward.
Whether my feet hurt or I wastired or was alone, you just put
one foot in front of the other.
So I figured that going forwardmindfully is really important.
So that's kind of why I thoughtabout dementia forward, so it's
not stuck in a place.

(13:50):
I mean we have to go forwardand I want people to move
forward to have the bestrelationships that they can with
their person.

Speaker 2 (13:59):
Wow, that's a very lot of thought process in that,
so that is great, thank you.
So our listeners are intrigued.
They want to learn more, so howcan they contact you and get
more information?

Speaker 3 (14:14):
Well, I have a website.
It's calledwwwdementiaforwardcom and it's
my first website I ever made, soI'm pretty proud of it.
Uh, I'm also on Facebook underdementia forward and I'm also on
LinkedIn, uh, under dementiaforward.
So when I um, what I do is totry to educate people.

(14:36):
So I offer a free one hourconsultation to talk to family
members, see where they're at,kind of make a plan, and then we
do an education together andbrainstorm.
Sometimes I get to do anassessment of their person,
which helps because then Iactually get to know who their
person is.
So, like I said, I can't changethe whole world but I'm hoping

(14:59):
just to change one person at atime and sort of my mantra is
education is the power toempower.
So that's why I'm verypassionate about this, so I'm
willing to help in any waypossible.

Speaker 2 (15:13):
I love it.
That's a great mantra.
Education is the power toempower, correct?
I like that.
Thanks well, debra.
I appreciate you taking yourtime today and being a guest and
educating our listeners on theGood Neighbor podcast.
Thank you very much for yourtime.
Thank you for having me, I feelprivileged.

Speaker 1 (15:38):
Thanks for listening to the Good Neighbor podcast
Rochester.
To nominate your favorite localbusinesses to be featured on
the show, go to GNPchestercom.
That's gnprochestercom, or call248-988-9640.
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