Kristy Russell takes us on a deeply personal and professional journey through the world of Alzheimer's disease and related dementias (ADRD). As Utah's sole specialist covering the entire state, Kristy shares how her grandmother's Lewy body dementia diagnosis transformed her perspective on memory care after initially swearing off working with dementia patients due to challenging experiences.
The conversation tackles misconceptions head-on. Memory loss is just one symptom — thinking, behavior, and problem-solving abilities are equally affected. Kristy reveals a startling reality: only half of people with Alzheimer's are diagnosed, and of those, merely 30% share their diagnosis with loved ones, often fearing loss of independence.
Communication emerges as the cornerstone challenge for caregivers. Through vivid examples, Kristy explains why arguing with someone with dementia about recent events is futile. Her "filing cabinet" metaphor brilliantly illustrates how memory works — newest files disappear first — helping caregivers understand why their loved ones can't simply "try harder" to remember.
For overwhelmed caregivers, Kristy offers practical wisdom about delegation and self-care. "The energy you put out is the energy you're going to get back from the person with dementia," she notes, emphasizing that seeking help isn't failure but excellence in caregiving. She explains respite options and encourages caregivers to maintain their own health appointments and activities.
Looking forward, Kristy shares hope about new medications like aducanumab that can remove brain plaques in early stages, signaling a positive trajectory in treatment development. Her powerful closing message resonates deeply: "You're doing a good job and you're not alone."
Whether you're caring for someone with dementia, working in healthcare, or simply seeking to understand these conditions better, this episode provides invaluable insights, practical strategies, and heartfelt encouragement for the journey ahead.
• Kristy's journey from swearing off dementia care to becoming Utah's statewide ADRD specialist
• Only about half of people with Alzheimer's disease are diagnosed, and of those, only 30% share their diagnosis with family and friends
• Early diagnosis allows for better planning and less crisis management as the disease progresses
• Communication challenges require meeting people with dementia in their reality rather than constantly correcting them
• The "filing cabinet" memory metaphor explains why recent memories disappear first
• Self-care for caregivers includes delegating tasks and utilizing respite services
• New medications like aducanumab can help in early stages by removing brain plaques
• The Utah government's WISE initiative focuses on helping seniors age in place independently
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to Senior Care Academy, a helperly
podcast.
I'm your host, caleb, and thisis a show where we explore the
latest insights, expert adviceand real-life strategies to
improve senior care.
Today, we're diving into anincredibly important topic the
Alzheimer's disease and relateddementias and how we can better
support those affected.
Joining us is Christy Russell,and she is the specialist for
(00:20):
ADRD, who has extensiveexperience in dementia care,
education and programdevelopment.
We'll be discussing the earlysigns of Alzheimer's, challenges
caregivers face, availableresources for families and
exciting advancements indementia research over the last
while.
If you're a caregiver, ahealthcare professional or
someone looking to understandmore about memory-related
conditions, this is an episodethat I'm excited to jump into
(00:44):
and get some valuable insights.
So, Christy, thank you so muchfor coming on and giving us some
of your time and expertise.
Speaker 2 (00:51):
Thanks for having me.
Speaker 1 (00:52):
Yeah, so let's start off.
Just can you tell us your story?
So what inspired you to getinto senior care but then
eventually specialize inAlzheimer's disease and related
dementias?
Speaker 2 (01:14):
Yeah.
So I started working inlong-term care as a CNA and I
worked in an assisted livingmemory care and it was a really
good experience.
Also some really badexperiences, and I swore that I
would never work with anyonewith dementia ever again,
because there was a lot of, likephysical issues.
I got pretty beat up by aresident one day and I was like
never again, that can't happen,um.
And then I switched over.
(01:35):
I started working at a hospitalin a different role and my
grandma actually got diagnosedwith Lewy body dementia and she
was living at home on her own,um.
So I kind of took on thatcaregiver role and started, uh,
early on in the disease.
It was just kind of checking upon her as it progressed.
It became making sure she wasshowering, making sure she was
(01:56):
eating all of that, um, until weeventually moved her into a
memory care, and so that waskind of my first time working
with somebody with dementia.
That was a really positiveexperience.
And then after she died, Iactually interned for the
Alzheimer's Association, theUtah chapter, and it was.
That again was a reallypositive experience and that
(02:19):
kind of led me to where I am nowand so I am in public health,
but I do the Alzheimer's diseaseand related dementias program
for the state department ofhealth and human services and
I'm the only one in the program,so I cover our entire state.
Speaker 1 (02:39):
Wow, that's impressive to cover the entire
state.
That's impressive to cover theentire state.
So, going back with taking careof your grandma when she had
dementia, what, I guess?
What did you really learn fromthat experience?
Was it was it earlier setdementia, so it was easier to
handle and that's why it was agood experience?
Or do you feel like it was agood experience because there
(03:00):
was a personal connection, somaybe you were made a little bit
more patient in the moment?
Speaker 2 (03:08):
I think that I learned that not every person
with dementia has violence.
In my working in memory care alot of the residents I met with
they had some violence in thereand so I had really bad
experiences Working with mygrandmother.
I did have that personalconnection but at the same time
(03:31):
I was kind of experiencing a lotfor the first time because I
had never done it in a home,without the resources that you
have in a professionalenvironment, and I kind of got
to see those early stages of thedisease and then work through
the progression with her and wekind of figured out a rhythm.
I definitely messed up a lot.
There are things now that Itell families not to do that I
(03:54):
definitely did and I guaranteemost of the caregivers listening
to this have done, and so it'skind of a trial and error and if
you don't laugh about it you'regoing to cry about it and you
just have to make it the bestthat you can.
Speaker 1 (04:08):
Yeah, I think that's great advice, like just be able
to kind of roll with theexperience, because it's like I
think that nobody there's peoplelike you that make it a career
to learn about how to do it.
But ninety nine point ninetimes out of 100, the care the
family caregiver has zeroexperience in it and it's like,
(04:30):
oh, I think mom is starting todevelop some dementia, I don't
know.
And then it's just like it'skind of spirals and they're just
trying to figure it out.
So be able to roll with thepunches and laugh about it a
little bit, I think is greatadvice.
Um, so what does a day-to-dayexperience look like for you as
the specialist over um ADRD?
Speaker 2 (04:53):
So, um, like I said, I cover the entire state and
that also means that I have alot of programs that we do.
So I am in the off the divisionof aging and adult services, um,
and we work really closely withthe area agencies on aging.
Utah has 12 of them throughoutthe state, and so I help
implement education and supportthroughout the state in
(05:15):
different communities, based onthe needs of those communities,
because all of our counties needsomething a little different.
And I do a lot of education toboth professionals but also
family caregivers on the diseaseprocess.
I give realistic communicationand behavior tips.
I get emails and phone callsfrom people in the community
(05:37):
saying, hey, I have thisquestion, I don't know what to
do.
I also get phone calls fromlong-term care hey, we have this
resident, we don't know what todo.
So I do all of that.
And then, utah, my program isactually legislatively funded,
and so we have an Alzheimer'sdisease and related dementias
council and a state plan withgoals and objectives that we
(05:57):
have to implement, and so I alsooversee all of those efforts.
Speaker 1 (06:01):
I love that.
What are some of the currentUtah government initiatives that
there are for seniors andAlzheimer's and people with
dementia?
Speaker 2 (06:11):
So the governor recently came out with his WISE
initiative, which is it standsfor Wealth, independence,
security and Engagement, andthat independence really is.
I connect with a lot in myprogram.
It's aging in place, aging athome, and so that's his big
(06:31):
focus as a statewide Us.
Specifically to Alzheimer's anddementia, we want to focus on
getting caregiver support beforethey're in crisis mode.
Oftentimes you don't know whatyou need until you need it, and
so we're trying to educate early.
We're also working on thatearly diagnosis.
I know some people don't want tobe diagnosed, but the earlier
(06:53):
you can get diagnosed, theearlier you can start planning
for the future and the lesscrisis mode you're going to feel
and your family's going to feelas the disease progresses.
So those are our two big thingsand we're also really focused
on like engagement programs forthose living with dementia.
Sometimes, once you've receivedthat diagnosis, people tend to
(07:13):
kind of retreat from theirnormal social lives, and we
still want you can still have awonderful life after a diagnosis
of dementia.
We just need to give you thetools to do that.
Speaker 1 (07:24):
Yeah, I think that that's a huge misconception.
A lot of times it's likedementia, it's game over a
little bit, where it's likethey're just going to whittle
away for however long theypersist.
But I think that there is a lotof opportunities to have
beautiful experiences we hadactually just recently.
So help release something thatwe like to do is show that just
(07:47):
cause you're getting old doesn'tmean that you have to be bubble
wrapped, like still experiencedlife.
Um, and we took it was 102 yearold lady who had dementia um,
her and her daughter to a Utahjazz game in the lower bowl and
stuff.
She's a lifelong jazz fan andit was like a really cool,
beautiful experience where shewas like excited about it.
(08:07):
We got her a custom Jersey, thejazz made like a little basket
for her and stuff.
Like it's cool to, even thoughshe might not remember it all
the way, like in that moment itwas an awesome experience for
her and a super awesomeexperience for her daughter too.
So like, yeah, there's a lot oflife to still be lived at.
Post diagnosis Um, what wouldyou say are some of the biggest
(08:31):
challenges in trying to diagnoseAlzheimer's and related
dementias early?
And like what, what does earlydetection look like?
Speaker 2 (08:40):
typically Okay.
So, um, first off, it's goingto be a little bit different for
everybody.
So when people hear Alzheimer'sgoing to be a little bit
different for everybody.
So when people hear Alzheimer'sand dementia, they
automatically think memory, ourmemory is not doing well.
But we need to remember thatit's also thinking and behaviors
and problem solving.
There's a lot of other thingsthat are symptoms of types of
(09:00):
dementia.
And when we think memory,memory is going to be noticed by
someone else.
I'm not going to notice thatI'm forgetting what day it is.
Someone else is going to noticethat I'm asking what day it is,
over and over.
So it's first step having thatconversation with somebody you
care about, that you noticethese symptoms in, and then you
have to take it to your doctor.
(09:20):
And some providers arefantastic about doing screenings
.
One of the really basic we'retalking tool in the toolbox not
an actual diagnosis is calledthe mini cog, which is where
they have you remember threewords and draw a clock.
Um, that is like basicscreening tool and I say that we
(09:40):
should be doing those atphysicals on everybody.
Get that baseline so we knowwhere everyone's memories at.
Physicals on everybody.
Get that baseline so we knowwhere everyone's memory is at
and continue on.
But oftentimes you actuallyhave to request these memory
screenings and so providers maynot be comfortable having the
conversation or doing thosescreenings.
I've heard families tell mestories.
(10:01):
Well, my doctor said what's thepoint in diagnosing you?
There's nothing you can doabout it.
The point of diagnosing is sothat you can plan ahead, and
each type of dementia has itsown symptoms.
And so, let's say, one of yoursymptoms is you're not able to
sleep.
Well, there's a medication thatcould probably help you with
that.
So let's get you tools to helpyou sleep so that you can live a
(10:21):
better life.
That's the purpose of thediagnosis to help you sleep so
that you can live a better life.
That's the purpose of thediagnosis.
So that's the biggest barrier istalking to your doctor, because
it's scary on both ends, rightas the caregiver or the family
member and as the personexperiencing the symptoms.
It's not necessarily aconversation that you're excited
(10:42):
to have, but have thoseconversations, be that safe
space, talk to the doctors andfor caregivers, even if you want
it to kind of be on the secret,you can call the doctor before
the appointment and say hey, I'mnoticing these in my dad, can
you please test him when we comein for his physical, have that
conversation, get those testsdone, and then for an official
diagnosis you oftentimes need alot of like scans and things
(11:04):
like that, and depending whereyou live in Utah, those are
difficult to obtain.
If you're in the Wasatch Front,we have the University of Utah
Health and they have an entireaging brain care clinic that
specializes in this.
But if you're not near theWasatch Front it's going to be a
little bit more difficult.
And so obtaining those tests,uh, some people go to neurology,
(11:27):
get referred to neurology.
Sometimes you're waiting six oreight months to see a
neurologist.
So I mean, it's, it's a timeconsuming, um obstacle course,
and I understand that.
And so, uh, I have anothergrandmother right now living
with dementia and she doesn'thave an official diagnosis.
If she asks me what I do and Itell her Alzheimer's and
(11:47):
dementia, she says, oh,alzheimer's is terrible, I hope
I never get it.
She tells me that all the time.
If I say, well, I think youmight have Alzheimer's disease,
she absolutely goes berserk.
She's so upset because howcould I say that about her?
So taking her to a doctor toget all these tests done is
never going to happen, andthat's something that we have to
deal with and that's a normalthing that families are going
(12:09):
through.
It would be nice to have anofficial diagnosis, but
sometimes you just have to, likewe said earlier, roll with the
punches and go with what you got.
Speaker 1 (12:17):
Yeah, that's really.
I mean, I have a grandma thatdefinitely, at bare minimum, has
pretty early signs, thatdefinitely a bare minimum has
pretty early signs.
But kind of the same thingwhether it's her or my grandpa.
They just don't want to do thework to get the diagnosis.
And it is scary as anindividual because we,
especially the currentpopulation that's aging like
(12:41):
getting old, meant somethingcompletely different when it was
their parents, and so it's.
It is scary to you know, turnand face the music a little bit
to see what's actually going on.
Um, it is interesting.
I agree, I think it would.
It wouldn't hurt anything ifprimary care physicians were
just adding in that little test,but it's interesting that it's.
(13:05):
I didn't know that it was liketaboo or like a what's the point
mentality a lot of the timefrom.
That's kind of sad because thepoint is that we can help them
more.
You know, it's like the monsteryou know versus a monster you
don't know.
It's a lot easier to battle themonster you know, you know.
Speaker 2 (13:23):
Yeah, and I think I don't think it's providers
choosing not to do their job.
I really think they thinkthey're doing what's best for
the patient.
Um, I and we're trying to fixthat stigma, we're trying to
help with that, provide moreeducation to providers, but I
think, um, that the idea of,well, there's nothing you can do
(13:44):
about it hopefully is changingwith some of the new research
and stuff that's being done, butat the same time, we need to
give our families as many toolsas possible because that crisis
mode and I throw some statisticsat you so only about half the
people with Alzheimer's diseaseare aware they have Alzheimer's
and of that half, only 30percent tell their family and
(14:06):
friends about their diagnosis.
So that's huge.
And we have statistics forpeople in Utah that are
diagnosed.
Right now, I believe it'salmost 40,000 people in Utah are
diagnosed with Alzheimer'sdisease specifically and we
think that's only about half.
Speaker 1 (14:27):
Yeah.
It's crazy if you think aboutthat, if that statistic, half
the people are diagnosed.
So if you have a hundred peoplein a theater that have
Alzheimer's, 50% know that theydo and 15 of them their family
and friends know that they do,which is crazy, like that's in
any in any other situation, likein depression or suicide or
(14:49):
other mental health struggles,that same number would just be
insane of like only 15 peoplethat have this.
You know like it's but it getsoverlooked.
That's super interesting yeah.
Speaker 2 (15:01):
And I think part of it too, is if I were to get
diagnosed with dementia.
I'm putting myself in the shoesof one of those people that
don't tell their family.
I'm afraid that they're goingto take away my independence the
minute you get diagnosed.
That doesn't mean you can'tdrive anymore, it doesn't mean
you can't work anymore, butthey're afraid.
Once I admit this to people,I'm going to lose my job.
I'm not going to be able todrive anymore.
(15:21):
I lose all of my independence.
I lose all of my independenceand to all of us.
Our independence is reallyimportant to us.
Granted, all of us haveindependence in varying degrees,
but I think it's important toremember that.
Speaker 1 (15:36):
That's a really big fear.
Yeah, I mean, get your driver'slicense at 16.
That's like a taste ofindependence.
And then you have that for 60years, 70 years and it's like
gone.
That's scary.
How does so?
How does Alzheimer's differfrom more like typical aging?
And then when should somebodyseek medical?
(15:57):
And if they do seek medicalearlier on, like those
medications that you mentionedwith sleeping and things like
that, does that, I imagine, helppostpone what people typically
think of dementia, which is liketotal memories gone, total all
of that.
Are there preventative thingsto make it postpone the decline?
Speaker 2 (16:16):
Okay.
So there is no way to preventany type of Alzheimer's disease.
The biggest risk factor isaging.
There are a lot of risk factors, that's just the biggest one.
So there's no way to prevent itand there's no way to stop or
slow the disease progression atthis time.
So really, you're managing thesymptoms for a better quality of
(16:39):
life, not necessarily to extendlife or to stop the disease,
and that'll vary based ondifferent people.
I would put my grandma now inthe middle the late later stages
, later part of the middle stageand she's still really
independent.
She needs someone to remind herto get dressed and to use the
(17:01):
bathroom and to shower and toeat.
She needs that, those remindersand some of that guidance, but
she's still really independent,whereas somebody that's had the
disease for just as long as hermay need a lot more assistance.
At this point it really justdepends on the person, the
health they were in before thedisease.
How early did the disease kindof started, those early symptoms
(17:23):
?
It just varies from individualto individual.
Speaker 1 (17:33):
Yeah, that is super interesting.
I like how you said as of rightnow, because there's a lot of
research going into it and whoknows what it'll look like when,
when, in a decade.
But that is something that Ididn't know.
I thought that there might bethings that are able to slow it.
But kind of just getting, as acaregiver and as the as the
individual with Alzheimer's,getting the support and the
resources as fast as you can tomake quality of life go up, is I
(17:57):
think that that's a good um, agood like reframe of mind.
Cause.
Another misconception that Ijust learned that I had is that
you can do something about thedeterioration, or like slowing
it, um, which makes it feel it'sa terror, like.
The best comparison I can thinkof is like women that have a
(18:18):
miscarriage automatically theirminds like how could I have
prevented that?
What did I do wrong?
When it's like you couldn'treally.
And it's the same thing withhaving a parent with alzheimer's
like how could I have preventedthat?
What did I do wrong?
When it's like you couldn'treally, and it's the same thing
with having a parent withAlzheimer's like how could I
have prevented that?
Or what could I have donebetter?
But it's like there's nothingyou could have done better.
It's just in the moment, doingthe best you can.
Um, I think that that's givinga little bit of grace to people
(18:39):
that are experiencing this inthe moment of just like I'm
doing the best I can and there'snothing that I could have done,
um, to slow it and whatnot.
Like it's going.
It's going to do what it'sgoing to do, you know.
Speaker 2 (18:52):
Yeah, and there are ways you can reduce your risk
and you can start at any age.
We're talking like eatinghealthy exercise, like the
standard things that we've beentold.
Uh, if you have hearing loss,using hearing aids, there's.
So there's risk reductiontechniques, but nothing is a
guarantee.
There's also blood tests thatsome people can take to see if
you have a gene for Alzheimer's,but that blood test says you're
(19:14):
more likely to get it, not thatyou will get it, and if you
don't have it, it doesn't meanyou won't get it.
So there's there's tools in thetoolbox.
I heard of that earlier withthe mini cog.
There's tools, but there'snothing that says you will get
it.
You won't get it.
This is why and this is how tostop it.
There's just not anything likethat right now no-transcript.
Speaker 1 (19:41):
There's nothing to slow down, you know, and that's
okay.
I think the comma and that'sokay is something that people
need to hear.
So I would love to hear on yousaid you get a bunch of phone
calls coming in or emails andfrom whether it's directors at
memory care facilities orcaregivers, family caregivers
(20:01):
what are some of the most commonstruggles that the caregivers
face when they're trying tosupport somebody with dementia?
Obviously we talked about lackof know-how, kind of they don't
know, but what are other commonstruggles that they face?
Speaker 2 (20:15):
Communication is a really big one, and I think
communication falls into a lotof different areas.
Because I'll get a call and say, hey, my dad and I are fighting
constantly over this.
He doesn't believe me.
I'm just telling him over andover the same things.
What do I do?
And you need to remember thatthe person with dementia has
damage to their brain that ruinstheir short-term memory, and so
(20:38):
I'll use a personal example.
My grandpa died when my mom wasyounger, and my grandma would
often say have you seen Wallace?
Have you seen Wallace?
And in the time I would saygrandma, remember, wallace died,
and then she would be bawlingand grieving and then 10 minutes
later, the same thing wouldhappen.
And so you don't want to remindsomeone over and over about
(20:58):
that bad news, because they'regoing to experience it for the
first time over and over andover.
And it's the same with arguing.
If dad's coming up to me andsaying when's lunch, when's
lunch, lunch, when's lunch, andI'm constantly saying we just
had it, we just had it, we justhad it.
Does he really want lunch ordoes he want something else?
You're kind of doing someimprov and figuring out what is
(21:20):
actually necessary, what heneeds.
Maybe he's hungry, maybe he'sbored.
So we're kind of digging intothings and so, instead of saying
you already had lunch, say,well, you know we already ate,
but are you hungry, would youlike something to drink?
And so you're kind of shiftingit a little bit.
I get asked a lot.
Well, my mom doesn't rememberwho I am and I'm trying to help
(21:40):
her remember.
Think about your memory as likea giant filing cabinet and your
most recent memories are in thenearest file, and when I ask
you about something that happens10 years ago, you have to go
through those files, pull thatout and then tell me that memory
.
Those memories are gone andthey're working from the newest
ones backwards.
And so right now, my grandmadoesn't remember who I am, and
(22:02):
that's okay.
I might be four different peopleduring a 20-minute visit and
you just play improv and you goalong with it, because arguing
with them you're not going towin, because in their mind they
are 100% positive, they knowwhat's going on, and so you have
to kind of join them in theirreality.
I think those are some of thebiggest things.
And then you just getcaregivers who are like my mom
(22:24):
won't shower.
What do I do?
But if you think about it.
If, in your brain, you thoughtyou showered this morning before
you got dressed and you'realready dressed for the day, and
now someone's telling you toget in the shower.
You're an adult, you're like.
I already showered, I alreadydid that.
I don't want to do it again.
So it's figuring out what'sactually going on and how we can
fix that.
Speaker 1 (22:46):
Yeah, call makes me think about an earlier episode
with Teepa Snow and she saidthere's like four F's.
It's like friendly, so itdoesn't feel like it's a
friendly space.
And that might be the callingback to like I don't want, I'm
hungry, I'm hungry, we didn'thave lunch.
It's like maybe they don't feellike it's a friendly space,
they're not being courteous orwhatever, and then familiar it's
an unfamiliar place, courteousor whatever, and then familiar
(23:06):
it's an unfamiliar place,functional, they don't know what
to do in the moment.
Or forgiving, the like gettingjudged, kind of in that moment
of like they thought theyalready showered and so saying
we need to take a shower.
They're like you're judging mebecause you think I smell bad or
something like it's.
You don't know what's going on.
So kind of calling back tothose four f's to try to
understand where, what are they,what is missing for them in
those four things.
And can I try to redirect to belike this is a friendly space
(23:31):
or like we're forgiving, we knowwhat's a?
Is there any cool stories of acaregiver who called in with
something like that and you wereable to help them make a
significant impact on thatrelationship the caregiver and
the person living with dementia.
Speaker 2 (23:50):
So unfortunately, because I do cover the entire
state oftentimes they ask forhelp.
I tell them the help and then Idon't necessarily hear from
them again.
We have some amazing caregiversin our state that attend our
classes and they get so much outof that and it lessens their
stress.
I say the energy that you putout is the energy you're going
to get back from the person youlove with dementia, and so I
(24:14):
know that even if I helped withone conversation, I helped with
something, but I don'toftentimes hear the follow-up,
so I just I figured they haven'treached out again, so things
went well.
Speaker 1 (24:23):
Yeah, it's hard.
I figured they haven't reachedout again, so things went well.
Yeah, uh, it's hard to not havethat feedback loop of like
you're doing great, christy, youknow.
So if anybody used Christybefore, tell her that she's
doing great.
Um, yeah, um, what?
So what self-care advice wouldyou give to caregivers, cause
you said we're kind of, if youdon't laugh, you cry, but it is
(24:47):
an overwhelming thing.
So what kind of self careadvice would you give to them?
Speaker 2 (24:50):
So I mean, there's some basic things that are going
to seem really hard and everycaregiver listening to this is
going to be like but I don'thave time, but wait till the end
.
So you need to keep up withyour own doctor's appointments
and if you always loved toexercise, keep exercising.
I know that caregivers, as theneeds of care increase, the
(25:12):
caregiver oftentimes feels likeI'm the only one that can do
this.
Right, and I understand.
I love control, so I get that.
But you have to pick thingsthat other people can help or do
for you, and so I alwayssuggest caregivers make a list
of all the tasks that they doevery day, from as small as
cooking breakfast, doing laundry, going grocery shopping.
(25:33):
Make a list of all of thosetasks.
Choose the ones you will notgive up.
Maybe I always want to be theone to do the bathing, the med
management and the finances, butthen when somebody a neighbor
or a sibling or someone elsesays, hey, is there anything I
can do for you, you can pullthat list out and say, actually
there is.
Are there any of these itemsthat you would be willing to do?
(25:54):
Sometimes it's as little as aneighbor saying hey, I'm running
to the grocery store Do youneed anything?
And you give them the list thatyou might get the wrong brand
of sour cream.
But that's not the end of theworld.
But that just saved you 20 to30 minutes.
And so in those 20 to 30minutes can you take a shower
for yourself, can you dosomething fun with the person
(26:16):
with dementia?
What does that look like?
You just have to find thosesnippets of time that you can
get rid of during the day thatsomeone else is willing to help
with.
I think that is a huge deal.
And then a lot of people don'tknow what respite care is and we
just call it like a break forthe caregiver and that could be
going to an adult day center.
Those are.
There are a couple of thosearound the state.
(26:37):
It's kind of like a daycare foradults with dementia.
That could be someone coming inand cleaning your house, that
could be a meal delivery service, someone coming and sitting
with your loved one withdementia for an hour while you
take a nap or go do somethingthat you enjoy.
You just kind of have to becreative with that.
And I think that not only dothey not know about respite, but
(27:00):
they also don't know how toobtain it, and so that's where
people like me come in, becauseI can direct you to places that
can help with things like that.
Speaker 1 (27:08):
Yeah, I think respite is one of the biggest things of
like being able to say I need abreak and I can whether
hopefully there's some programsthat are free or insurance
that'll cover it, but, um, likeknowing that it's worth the
little investment to be ablejust to like reset, go and get a
(27:29):
pedicure or something, go andhave some you time, and so, yeah
, I think that's great advice.
We're getting close on time.
Looking ahead, what issomething that gives you
personal hope of the future ofAlzheimer's care and treatment?
What's something that you seewhether whether it's technology
or research.
Speaker 2 (27:48):
Yeah, so in the past COVID kind of messed up my gauge
of time.
So post-COVID there's likethree years it just didn't
happen.
I know there's been somemedications that have come out.
They are specific toAlzheimer's disease.
One of them is calledaducanumab.
(28:10):
Of course I say that wrong, butit's an intravenous medication.
The downside to it is it onlyhelps if you catch the dementia
in what we refer to as cognitivedecline, which is like a
precursor to Alzheimer's disease.
So that's very early andoftentimes families may not even
be noticing the symptoms.
But it's an IV medicationthat's actually removing the
(28:32):
plaques and tangles out of thebrain, and so it is postponing
the onset of Alzheimer's diseasein the studies.
That being said, it is veryexpensive and because it's IV,
you have to go to an IV centerthat's offering that medication.
So there's a lot that goes intoit.
It's not for everyone, it's notfor all types of dementia, so,
but that's a hopeful thing.
(28:52):
We've made a step.
This is the first medication forthat, and I feel like now that
we've gotten the first, I thinkthere's four or five of them out
now.
Once we've got those going,we're on a trajectory where more
things are going to happen andhopefully more research is going
to help with that, and so thatgives me hope that maybe in my
lifetime, hopefully in mylifetime, there will be somebody
(29:15):
that we can cure dementia Ifnot my lifetime, the generation
after me.
Like we're in a good trajectorygoing forward, so that's
hopeful, and I think through mywork I just meet so many
wonderful people that truly careabout the people with dementia
and caregivers, and so there aregood people out there and there
are resources, and I love myjob for that reason and I love
(29:38):
the people that I work with forthat reason, um and so let's
just get people connected to theright folks and help you have a
great caregiving journey and agood journey.
Living with dementia Again,that quality of life comes into
play.
We all deserve a good qualityof life, so let's try and help
make it happen.
Speaker 1 (29:57):
Yeah, I love that.
That's really cool.
I didn't know about themedication.
Like I said, it's reallyexpensive now, but as long as we
keep on trudging away,eventually it'll be manageable.
So now, last question Pretendit's your coach and it's
halftime and your team is fullof caregivers that have people
living with dementia thatthey're helping take care of.
(30:19):
What encouragement would yougive those caregivers who have
family members with dementia?
Speaker 2 (30:27):
You're doing a good job and you're not alone.
Oftentimes caregivers think, oh, I messed that up or I'm not
doing this well enough.
You are.
If you're doing it to the bestthat you can, you're doing a
good job, and sometimes thatmeans you're doing it at 100%
and some days that means you'redoing it at 40% because that's
all you can do that day and thatis still perfect.
You're doing a great job andoften caregivers feel alone and
(30:50):
you're not alone.
There are support groups outthere which I know kind of have
a stigma with them, but beingaround other people going
through what you're goingthrough can be really, really
helpful, and don't be afraid toask for help.
It doesn't mean that you'refailing.
It means that you are excellingand taking care of yourself,
and the more you can take careof yourself, the better care
you're going to provide for yourloved one with dementia.
(31:11):
Um, but you're doing a greatjob, giving what you can give.
Speaker 1 (31:18):
You're awesome.
Um, that was great, Christy.
I appreciate all of the stuffthat you've said and, um, yeah,
if there's any cool resourcesthat you have or like links, we
could throw them in thedescription of the episode.
But it's just been awesometalking to you and appreciate
you sharing half an hour of timewith us today.
Speaker 2 (31:36):
Thank you so much.
I think the first link we havea state website.
It's just dementiautahgov.
It's an easy place to get intouch with me.
It's an easy place to findresources, depending if you're a
professional, a provider, care,family caregiver or a person
living with dementia.
We've got resources for all ofthose.
Speaker 1 (31:54):
Cool, that's awesome.
Um well, thank you so much,Christy for coming on and you're
great and you're tackling allof Utah by yourself.
By yourself, You're doing great.
So everybody, send love toChristy if she's helped you in
some way, because she needs it.
She deserves it.
So
Welcome back to Senior Care Academy, a helperly
podcast.
I'm your host, caleb, and thisis a show where we explore the
latest insights, expert adviceand real-life strategies to
improve senior care.
Today, we're diving into anincredibly important topic the
Alzheimer's disease and relateddementias and how we can better
support those affected.
Joining us is Christy Russell,and she is the specialist for
(00:20):
ADRD, who has extensiveexperience in dementia care,
education and programdevelopment.
We'll be discussing the earlysigns of Alzheimer's, challenges
caregivers face, availableresources for families and
exciting advancements indementia research over the last
while.
If you're a caregiver, ahealthcare professional or
someone looking to understandmore about memory-related
conditions, this is an episodethat I'm excited to jump into
(00:44):
and get some valuable insights.
So, Christy, thank you so muchfor coming on and giving us some
of your time and expertise.
Speaker 2 (00:51):
Thanks for having me.
Speaker 1 (00:52):
Yeah, so let's start off.
Just can you tell us your story?
So what inspired you to getinto senior care but then
eventually specialize inAlzheimer's disease and related
dementias?
Speaker 2 (01:14):
Yeah.
So I started working inlong-term care as a CNA and I
worked in an assisted livingmemory care and it was a really
good experience.
Also some really badexperiences, and I swore that I
would never work with anyonewith dementia ever again,
because there was a lot of, likephysical issues.
I got pretty beat up by aresident one day and I was like
never again, that can't happen,um.
And then I switched over.
(01:35):
I started working at a hospitalin a different role and my
grandma actually got diagnosedwith Lewy body dementia and she
was living at home on her own,um.
So I kind of took on thatcaregiver role and started, uh,
early on in the disease.
It was just kind of checking upon her as it progressed.
It became making sure she wasshowering, making sure she was
(01:56):
eating all of that, um, until weeventually moved her into a
memory care, and so that waskind of my first time working
with somebody with dementia.
That was a really positiveexperience.
And then after she died, Iactually interned for the
Alzheimer's Association, theUtah chapter, and it was.
That again was a reallypositive experience and that
(02:19):
kind of led me to where I am nowand so I am in public health,
but I do the Alzheimer's diseaseand related dementias program
for the state department ofhealth and human services and
I'm the only one in the program,so I cover our entire state.
Speaker 1 (02:39):
Wow, that's impressive to cover the entire
state.
That's impressive to cover theentire state.
So, going back with taking careof your grandma when she had
dementia, what, I guess?
What did you really learn fromthat experience?
Was it was it earlier setdementia, so it was easier to
handle and that's why it was agood experience?
Or do you feel like it was agood experience because there
(03:00):
was a personal connection, somaybe you were made a little bit
more patient in the moment?
Speaker 2 (03:08):
I think that I learned that not every person
with dementia has violence.
In my working in memory care alot of the residents I met with
they had some violence in thereand so I had really bad
experiences Working with mygrandmother.
I did have that personalconnection but at the same time
(03:31):
I was kind of experiencing a lotfor the first time because I
had never done it in a home,without the resources that you
have in a professionalenvironment, and I kind of got
to see those early stages of thedisease and then work through
the progression with her and wekind of figured out a rhythm.
I definitely messed up a lot.
There are things now that Itell families not to do that I
(03:54):
definitely did and I guaranteemost of the caregivers listening
to this have done, and so it'skind of a trial and error and if
you don't laugh about it you'regoing to cry about it and you
just have to make it the bestthat you can.
Speaker 1 (04:08):
Yeah, I think that's great advice, like just be able
to kind of roll with theexperience, because it's like I
think that nobody there's peoplelike you that make it a career
to learn about how to do it.
But ninety nine point ninetimes out of 100, the care the
family caregiver has zeroexperience in it and it's like,
(04:30):
oh, I think mom is starting todevelop some dementia, I don't
know.
And then it's just like it'skind of spirals and they're just
trying to figure it out.
So be able to roll with thepunches and laugh about it a
little bit, I think is greatadvice.
Um, so what does a day-to-dayexperience look like for you as
the specialist over um ADRD?
Speaker 2 (04:53):
So, um, like I said, I cover the entire state and
that also means that I have alot of programs that we do.
So I am in the off the divisionof aging and adult services, um,
and we work really closely withthe area agencies on aging.
Utah has 12 of them throughoutthe state, and so I help
implement education and supportthroughout the state in
(05:15):
different communities, based onthe needs of those communities,
because all of our counties needsomething a little different.
And I do a lot of education toboth professionals but also
family caregivers on the diseaseprocess.
I give realistic communicationand behavior tips.
I get emails and phone callsfrom people in the community
(05:37):
saying, hey, I have thisquestion, I don't know what to
do.
I also get phone calls fromlong-term care hey, we have this
resident, we don't know what todo.
So I do all of that.
And then, utah, my program isactually legislatively funded,
and so we have an Alzheimer'sdisease and related dementias
council and a state plan withgoals and objectives that we
(05:57):
have to implement, and so I alsooversee all of those efforts.
Speaker 1 (06:01):
I love that.
What are some of the currentUtah government initiatives that
there are for seniors andAlzheimer's and people with
dementia?
Speaker 2 (06:11):
So the governor recently came out with his WISE
initiative, which is it standsfor Wealth, independence,
security and Engagement, andthat independence really is.
I connect with a lot in myprogram.
It's aging in place, aging athome, and so that's his big
(06:31):
focus as a statewide Us.
Specifically to Alzheimer's anddementia, we want to focus on
getting caregiver support beforethey're in crisis mode.
Oftentimes you don't know whatyou need until you need it, and
so we're trying to educate early.
We're also working on thatearly diagnosis.
I know some people don't want tobe diagnosed, but the earlier
(06:53):
you can get diagnosed, theearlier you can start planning
for the future and the lesscrisis mode you're going to feel
and your family's going to feelas the disease progresses.
So those are our two big thingsand we're also really focused
on like engagement programs forthose living with dementia.
Sometimes, once you've receivedthat diagnosis, people tend to
(07:13):
kind of retreat from theirnormal social lives, and we
still want you can still have awonderful life after a diagnosis
of dementia.
We just need to give you thetools to do that.
Speaker 1 (07:24):
Yeah, I think that that's a huge misconception.
A lot of times it's likedementia, it's game over a
little bit, where it's likethey're just going to whittle
away for however long theypersist.
But I think that there is a lotof opportunities to have
beautiful experiences we hadactually just recently.
So help release something thatwe like to do is show that just
(07:47):
cause you're getting old doesn'tmean that you have to be bubble
wrapped, like still experiencedlife.
Um, and we took it was 102 yearold lady who had dementia um,
her and her daughter to a Utahjazz game in the lower bowl and
stuff.
She's a lifelong jazz fan andit was like a really cool,
beautiful experience where shewas like excited about it.
(08:07):
We got her a custom Jersey, thejazz made like a little basket
for her and stuff.
Like it's cool to, even thoughshe might not remember it all
the way, like in that moment itwas an awesome experience for
her and a super awesomeexperience for her daughter too.
So like, yeah, there's a lot oflife to still be lived at.
Post diagnosis Um, what wouldyou say are some of the biggest
(08:31):
challenges in trying to diagnoseAlzheimer's and related
dementias early?
And like what, what does earlydetection look like?
Speaker 2 (08:40):
typically Okay.
So, um, first off, it's goingto be a little bit different for
everybody.
So when people hear Alzheimer'sgoing to be a little bit
different for everybody.
So when people hear Alzheimer'sand dementia, they
automatically think memory, ourmemory is not doing well.
But we need to remember thatit's also thinking and behaviors
and problem solving.
There's a lot of other thingsthat are symptoms of types of
(09:00):
dementia.
And when we think memory,memory is going to be noticed by
someone else.
I'm not going to notice thatI'm forgetting what day it is.
Someone else is going to noticethat I'm asking what day it is,
over and over.
So it's first step having thatconversation with somebody you
care about, that you noticethese symptoms in, and then you
have to take it to your doctor.
(09:20):
And some providers arefantastic about doing screenings
.
One of the really basic we'retalking tool in the toolbox not
an actual diagnosis is calledthe mini cog, which is where
they have you remember threewords and draw a clock.
Um, that is like basicscreening tool and I say that we
(09:40):
should be doing those atphysicals on everybody.
Get that baseline so we knowwhere everyone's memories at.
Physicals on everybody.
Get that baseline so we knowwhere everyone's memory is at
and continue on.
But oftentimes you actuallyhave to request these memory
screenings and so providers maynot be comfortable having the
conversation or doing thosescreenings.
I've heard families tell mestories.
(10:01):
Well, my doctor said what's thepoint in diagnosing you?
There's nothing you can doabout it.
The point of diagnosing is sothat you can plan ahead, and
each type of dementia has itsown symptoms.
And so, let's say, one of yoursymptoms is you're not able to
sleep.
Well, there's a medication thatcould probably help you with
that.
So let's get you tools to helpyou sleep so that you can live a
(10:21):
better life.
That's the purpose of thediagnosis to help you sleep so
that you can live a better life.
That's the purpose of thediagnosis.
So that's the biggest barrier istalking to your doctor, because
it's scary on both ends, rightas the caregiver or the family
member and as the personexperiencing the symptoms.
It's not necessarily aconversation that you're excited
(10:42):
to have, but have thoseconversations, be that safe
space, talk to the doctors andfor caregivers, even if you want
it to kind of be on the secret,you can call the doctor before
the appointment and say hey, I'mnoticing these in my dad, can
you please test him when we comein for his physical, have that
conversation, get those testsdone, and then for an official
diagnosis you oftentimes need alot of like scans and things
(11:04):
like that, and depending whereyou live in Utah, those are
difficult to obtain.
If you're in the Wasatch Front,we have the University of Utah
Health and they have an entireaging brain care clinic that
specializes in this.
But if you're not near theWasatch Front it's going to be a
little bit more difficult.
And so obtaining those tests,uh, some people go to neurology,
(11:27):
get referred to neurology.
Sometimes you're waiting six oreight months to see a
neurologist.
So I mean, it's, it's a timeconsuming, um obstacle course,
and I understand that.
And so, uh, I have anothergrandmother right now living
with dementia and she doesn'thave an official diagnosis.
If she asks me what I do and Itell her Alzheimer's and
(11:47):
dementia, she says, oh,alzheimer's is terrible, I hope
I never get it.
She tells me that all the time.
If I say, well, I think youmight have Alzheimer's disease,
she absolutely goes berserk.
She's so upset because howcould I say that about her?
So taking her to a doctor toget all these tests done is
never going to happen, andthat's something that we have to
deal with and that's a normalthing that families are going
(12:09):
through.
It would be nice to have anofficial diagnosis, but
sometimes you just have to, likewe said earlier, roll with the
punches and go with what you got.
Speaker 1 (12:17):
Yeah, that's really.
I mean, I have a grandma thatdefinitely, at bare minimum, has
pretty early signs, thatdefinitely a bare minimum has
pretty early signs.
But kind of the same thingwhether it's her or my grandpa.
They just don't want to do thework to get the diagnosis.
And it is scary as anindividual because we,
especially the currentpopulation that's aging like
(12:41):
getting old, meant somethingcompletely different when it was
their parents, and so it's.
It is scary to you know, turnand face the music a little bit
to see what's actually going on.
Um, it is interesting.
I agree, I think it would.
It wouldn't hurt anything ifprimary care physicians were
just adding in that little test,but it's interesting that it's.
(13:05):
I didn't know that it was liketaboo or like a what's the point
mentality a lot of the timefrom.
That's kind of sad because thepoint is that we can help them
more.
You know, it's like the monsteryou know versus a monster you
don't know.
It's a lot easier to battle themonster you know, you know.
Speaker 2 (13:23):
Yeah, and I think I don't think it's providers
choosing not to do their job.
I really think they thinkthey're doing what's best for
the patient.
Um, I and we're trying to fixthat stigma, we're trying to
help with that, provide moreeducation to providers, but I
think, um, that the idea of,well, there's nothing you can do
(13:44):
about it hopefully is changingwith some of the new research
and stuff that's being done, butat the same time, we need to
give our families as many toolsas possible because that crisis
mode and I throw some statisticsat you so only about half the
people with Alzheimer's diseaseare aware they have Alzheimer's
and of that half, only 30percent tell their family and
(14:06):
friends about their diagnosis.
So that's huge.
And we have statistics forpeople in Utah that are
diagnosed.
Right now, I believe it'salmost 40,000 people in Utah are
diagnosed with Alzheimer'sdisease specifically and we
think that's only about half.
Speaker 1 (14:27):
Yeah.
It's crazy if you think aboutthat, if that statistic, half
the people are diagnosed.
So if you have a hundred peoplein a theater that have
Alzheimer's, 50% know that theydo and 15 of them their family
and friends know that they do,which is crazy, like that's in
any in any other situation, likein depression or suicide or
(14:49):
other mental health struggles,that same number would just be
insane of like only 15 peoplethat have this.
You know like it's but it getsoverlooked.
That's super interesting yeah.
Speaker 2 (15:01):
And I think part of it too, is if I were to get
diagnosed with dementia.
I'm putting myself in the shoesof one of those people that
don't tell their family.
I'm afraid that they're goingto take away my independence the
minute you get diagnosed.
That doesn't mean you can'tdrive anymore, it doesn't mean
you can't work anymore, butthey're afraid.
Once I admit this to people,I'm going to lose my job.
I'm not going to be able todrive anymore.
(15:21):
I lose all of my independence.
I lose all of my independenceand to all of us.
Our independence is reallyimportant to us.
Granted, all of us haveindependence in varying degrees,
but I think it's important toremember that.
Speaker 1 (15:36):
That's a really big fear.
Yeah, I mean, get your driver'slicense at 16.
That's like a taste ofindependence.
And then you have that for 60years, 70 years and it's like
gone.
That's scary.
How does so?
How does Alzheimer's differfrom more like typical aging?
And then when should somebodyseek medical?
(15:57):
And if they do seek medicalearlier on, like those
medications that you mentionedwith sleeping and things like
that, does that, I imagine, helppostpone what people typically
think of dementia, which is liketotal memories gone, total all
of that.
Are there preventative thingsto make it postpone the decline?
Speaker 2 (16:16):
Okay.
So there is no way to preventany type of Alzheimer's disease.
The biggest risk factor isaging.
There are a lot of risk factors, that's just the biggest one.
So there's no way to prevent itand there's no way to stop or
slow the disease progression atthis time.
So really, you're managing thesymptoms for a better quality of
(16:39):
life, not necessarily to extendlife or to stop the disease,
and that'll vary based ondifferent people.
I would put my grandma now inthe middle the late later stages
, later part of the middle stageand she's still really
independent.
She needs someone to remind herto get dressed and to use the
(17:01):
bathroom and to shower and toeat.
She needs that, those remindersand some of that guidance, but
she's still really independent,whereas somebody that's had the
disease for just as long as hermay need a lot more assistance.
At this point it really justdepends on the person, the
health they were in before thedisease.
How early did the disease kindof started, those early symptoms
(17:23):
?
It just varies from individualto individual.
Speaker 1 (17:33):
Yeah, that is super interesting.
I like how you said as of rightnow, because there's a lot of
research going into it and whoknows what it'll look like when,
when, in a decade.
But that is something that Ididn't know.
I thought that there might bethings that are able to slow it.
But kind of just getting, as acaregiver and as the as the
individual with Alzheimer's,getting the support and the
resources as fast as you can tomake quality of life go up, is I
(17:57):
think that that's a good um, agood like reframe of mind.
Cause.
Another misconception that Ijust learned that I had is that
you can do something about thedeterioration, or like slowing
it, um, which makes it feel it'sa terror, like.
The best comparison I can thinkof is like women that have a
(18:18):
miscarriage automatically theirminds like how could I have
prevented that?
What did I do wrong?
When it's like you couldn'treally.
And it's the same thing withhaving a parent with alzheimer's
like how could I have preventedthat?
What did I do wrong?
When it's like you couldn'treally, and it's the same thing
with having a parent withAlzheimer's like how could I
have prevented that?
Or what could I have donebetter?
But it's like there's nothingyou could have done better.
It's just in the moment, doingthe best you can.
Um, I think that that's givinga little bit of grace to people
(18:39):
that are experiencing this inthe moment of just like I'm
doing the best I can and there'snothing that I could have done,
um, to slow it and whatnot.
Like it's going.
It's going to do what it'sgoing to do, you know.
Speaker 2 (18:52):
Yeah, and there are ways you can reduce your risk
and you can start at any age.
We're talking like eatinghealthy exercise, like the
standard things that we've beentold.
Uh, if you have hearing loss,using hearing aids, there's.
So there's risk reductiontechniques, but nothing is a
guarantee.
There's also blood tests thatsome people can take to see if
you have a gene for Alzheimer's,but that blood test says you're
(19:14):
more likely to get it, not thatyou will get it, and if you
don't have it, it doesn't meanyou won't get it.
So there's there's tools in thetoolbox.
I heard of that earlier withthe mini cog.
There's tools, but there'snothing that says you will get
it.
You won't get it.
This is why and this is how tostop it.
There's just not anything likethat right now no-transcript.
Speaker 1 (19:41):
There's nothing to slow down, you know, and that's
okay.
I think the comma and that'sokay is something that people
need to hear.
So I would love to hear on yousaid you get a bunch of phone
calls coming in or emails andfrom whether it's directors at
memory care facilities orcaregivers, family caregivers
(20:01):
what are some of the most commonstruggles that the caregivers
face when they're trying tosupport somebody with dementia?
Obviously we talked about lackof know-how, kind of they don't
know, but what are other commonstruggles that they face?
Speaker 2 (20:15):
Communication is a really big one, and I think
communication falls into a lotof different areas.
Because I'll get a call and say, hey, my dad and I are fighting
constantly over this.
He doesn't believe me.
I'm just telling him over andover the same things.
What do I do?
And you need to remember thatthe person with dementia has
damage to their brain that ruinstheir short-term memory, and so
(20:38):
I'll use a personal example.
My grandpa died when my mom wasyounger, and my grandma would
often say have you seen Wallace?
Have you seen Wallace?
And in the time I would saygrandma, remember, wallace died,
and then she would be bawlingand grieving and then 10 minutes
later, the same thing wouldhappen.
And so you don't want to remindsomeone over and over about
(20:58):
that bad news, because they'regoing to experience it for the
first time over and over andover.
And it's the same with arguing.
If dad's coming up to me andsaying when's lunch, when's
lunch, lunch, when's lunch, andI'm constantly saying we just
had it, we just had it, we justhad it.
Does he really want lunch ordoes he want something else?
You're kind of doing someimprov and figuring out what is
(21:20):
actually necessary, what heneeds.
Maybe he's hungry, maybe he'sbored.
So we're kind of digging intothings and so, instead of saying
you already had lunch, say,well, you know we already ate,
but are you hungry, would youlike something to drink?
And so you're kind of shiftingit a little bit.
I get asked a lot.
Well, my mom doesn't rememberwho I am and I'm trying to help
(21:40):
her remember.
Think about your memory as likea giant filing cabinet and your
most recent memories are in thenearest file, and when I ask
you about something that happens10 years ago, you have to go
through those files, pull thatout and then tell me that memory
.
Those memories are gone andthey're working from the newest
ones backwards.
And so right now, my grandmadoesn't remember who I am, and
(22:02):
that's okay.
I might be four different peopleduring a 20-minute visit and
you just play improv and you goalong with it, because arguing
with them you're not going towin, because in their mind they
are 100% positive, they knowwhat's going on, and so you have
to kind of join them in theirreality.
I think those are some of thebiggest things.
And then you just getcaregivers who are like my mom
(22:24):
won't shower.
What do I do?
But if you think about it.
If, in your brain, you thoughtyou showered this morning before
you got dressed and you'realready dressed for the day, and
now someone's telling you toget in the shower.
You're an adult, you're like.
I already showered, I alreadydid that.
I don't want to do it again.
So it's figuring out what'sactually going on and how we can
fix that.
Speaker 1 (22:46):
Yeah, call makes me think about an earlier episode
with Teepa Snow and she saidthere's like four F's.
It's like friendly, so itdoesn't feel like it's a
friendly space.
And that might be the callingback to like I don't want, I'm
hungry, I'm hungry, we didn'thave lunch.
It's like maybe they don't feellike it's a friendly space,
they're not being courteous orwhatever, and then familiar it's
an unfamiliar place, courteousor whatever, and then familiar
(23:06):
it's an unfamiliar place,functional, they don't know what
to do in the moment.
Or forgiving, the like gettingjudged, kind of in that moment
of like they thought theyalready showered and so saying
we need to take a shower.
They're like you're judging mebecause you think I smell bad or
something like it's.
You don't know what's going on.
So kind of calling back tothose four f's to try to
understand where, what are they,what is missing for them in
those four things.
And can I try to redirect to belike this is a friendly space
(23:31):
or like we're forgiving, we knowwhat's a?
Is there any cool stories of acaregiver who called in with
something like that and you wereable to help them make a
significant impact on thatrelationship the caregiver and
the person living with dementia.
Speaker 2 (23:50):
So unfortunately, because I do cover the entire
state oftentimes they ask forhelp.
I tell them the help and then Idon't necessarily hear from
them again.
We have some amazing caregiversin our state that attend our
classes and they get so much outof that and it lessens their
stress.
I say the energy that you putout is the energy you're going
to get back from the person youlove with dementia, and so I
(24:14):
know that even if I helped withone conversation, I helped with
something, but I don'toftentimes hear the follow-up,
so I just I figured they haven'treached out again, so things
went well.
Speaker 1 (24:23):
Yeah, it's hard.
I figured they haven't reachedout again, so things went well.
Yeah, uh, it's hard to not havethat feedback loop of like
you're doing great, christy, youknow.
So if anybody used Christybefore, tell her that she's
doing great.
Um, yeah, um, what?
So what self-care advice wouldyou give to caregivers, cause
you said we're kind of, if youdon't laugh, you cry, but it is
(24:47):
an overwhelming thing.
So what kind of self careadvice would you give to them?
Speaker 2 (24:50):
So I mean, there's some basic things that are going
to seem really hard and everycaregiver listening to this is
going to be like but I don'thave time, but wait till the end
.
So you need to keep up withyour own doctor's appointments
and if you always loved toexercise, keep exercising.
I know that caregivers, as theneeds of care increase, the
(25:12):
caregiver oftentimes feels likeI'm the only one that can do
this.
Right, and I understand.
I love control, so I get that.
But you have to pick thingsthat other people can help or do
for you, and so I alwayssuggest caregivers make a list
of all the tasks that they doevery day, from as small as
cooking breakfast, doing laundry, going grocery shopping.
(25:33):
Make a list of all of thosetasks.
Choose the ones you will notgive up.
Maybe I always want to be theone to do the bathing, the med
management and the finances, butthen when somebody a neighbor
or a sibling or someone elsesays, hey, is there anything I
can do for you, you can pullthat list out and say, actually
there is.
Are there any of these itemsthat you would be willing to do?
(25:54):
Sometimes it's as little as aneighbor saying hey, I'm running
to the grocery store Do youneed anything?
And you give them the list thatyou might get the wrong brand
of sour cream.
But that's not the end of theworld.
But that just saved you 20 to30 minutes.
And so in those 20 to 30minutes can you take a shower
for yourself, can you dosomething fun with the person
(26:16):
with dementia?
What does that look like?
You just have to find thosesnippets of time that you can
get rid of during the day thatsomeone else is willing to help
with.
I think that is a huge deal.
And then a lot of people don'tknow what respite care is and we
just call it like a break forthe caregiver and that could be
going to an adult day center.
Those are.
There are a couple of thosearound the state.
(26:37):
It's kind of like a daycare foradults with dementia.
That could be someone coming inand cleaning your house, that
could be a meal delivery service, someone coming and sitting
with your loved one withdementia for an hour while you
take a nap or go do somethingthat you enjoy.
You just kind of have to becreative with that.
And I think that not only dothey not know about respite, but
(27:00):
they also don't know how toobtain it, and so that's where
people like me come in, becauseI can direct you to places that
can help with things like that.
Speaker 1 (27:08):
Yeah, I think respite is one of the biggest things of
like being able to say I need abreak and I can whether
hopefully there's some programsthat are free or insurance
that'll cover it, but, um, likeknowing that it's worth the
little investment to be ablejust to like reset, go and get a
(27:29):
pedicure or something, go andhave some you time, and so, yeah
, I think that's great advice.
We're getting close on time.
Looking ahead, what issomething that gives you
personal hope of the future ofAlzheimer's care and treatment?
What's something that you seewhether whether it's technology
or research.
Speaker 2 (27:48):
Yeah, so in the past COVID kind of messed up my gauge
of time.
So post-COVID there's likethree years it just didn't
happen.
I know there's been somemedications that have come out.
They are specific toAlzheimer's disease.
One of them is calledaducanumab.
(28:10):
Of course I say that wrong, butit's an intravenous medication.
The downside to it is it onlyhelps if you catch the dementia
in what we refer to as cognitivedecline, which is like a
precursor to Alzheimer's disease.
So that's very early andoftentimes families may not even
be noticing the symptoms.
But it's an IV medicationthat's actually removing the
(28:32):
plaques and tangles out of thebrain, and so it is postponing
the onset of Alzheimer's diseasein the studies.
That being said, it is veryexpensive and because it's IV,
you have to go to an IV centerthat's offering that medication.
So there's a lot that goes intoit.
It's not for everyone, it's notfor all types of dementia, so,
but that's a hopeful thing.
(28:52):
We've made a step.
This is the first medication forthat, and I feel like now that
we've gotten the first, I thinkthere's four or five of them out
now.
Once we've got those going,we're on a trajectory where more
things are going to happen andhopefully more research is going
to help with that, and so thatgives me hope that maybe in my
lifetime, hopefully in mylifetime, there will be somebody
(29:15):
that we can cure dementia Ifnot my lifetime, the generation
after me.
Like we're in a good trajectorygoing forward, so that's
hopeful, and I think through mywork I just meet so many
wonderful people that truly careabout the people with dementia
and caregivers, and so there aregood people out there and there
are resources, and I love myjob for that reason and I love
(29:38):
the people that I work with forthat reason, um and so let's
just get people connected to theright folks and help you have a
great caregiving journey and agood journey.
Living with dementia Again,that quality of life comes into
play.
We all deserve a good qualityof life, so let's try and help
make it happen.
Speaker 1 (29:57):
Yeah, I love that.
That's really cool.
I didn't know about themedication.
Like I said, it's reallyexpensive now, but as long as we
keep on trudging away,eventually it'll be manageable.
So now, last question Pretendit's your coach and it's
halftime and your team is fullof caregivers that have people
living with dementia thatthey're helping take care of.
(30:19):
What encouragement would yougive those caregivers who have
family members with dementia?
Speaker 2 (30:27):
You're doing a good job and you're not alone.
Oftentimes caregivers think, oh, I messed that up or I'm not
doing this well enough.
You are.
If you're doing it to the bestthat you can, you're doing a
good job, and sometimes thatmeans you're doing it at 100%
and some days that means you'redoing it at 40% because that's
all you can do that day and thatis still perfect.
You're doing a great job andoften caregivers feel alone and
(30:50):
you're not alone.
There are support groups outthere which I know kind of have
a stigma with them, but beingaround other people going
through what you're goingthrough can be really, really
helpful, and don't be afraid toask for help.
It doesn't mean that you'refailing.
It means that you are excellingand taking care of yourself,
and the more you can take careof yourself, the better care
you're going to provide for yourloved one with dementia.
(31:11):
Um, but you're doing a greatjob, giving what you can give.
Speaker 1 (31:18):
You're awesome.
Um, that was great, Christy.
I appreciate all of the stuffthat you've said and, um, yeah,
if there's any cool resourcesthat you have or like links, we
could throw them in thedescription of the episode.
But it's just been awesometalking to you and appreciate
you sharing half an hour of timewith us today.
Speaker 2 (31:36):
Thank you so much.
I think the first link we havea state website.
It's just dementiautahgov.
It's an easy place to get intouch with me.
It's an easy place to findresources, depending if you're a
professional, a provider, care,family caregiver or a person
living with dementia.
We've got resources for all ofthose.
Speaker 1 (31:54):
Cool, that's awesome.
Um well, thank you so much,Christy for coming on and you're
great and you're tackling allof Utah by yourself.
By yourself, You're doing great.
So everybody, send love toChristy if she's helped you in
some way, because she needs it.
She deserves it.
So
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