The Journey with Dementia: Understanding Behavior Changes and Challenges

Dementia has a deep impact not only on those who are diagnosed but also on the people who are closest to them. Family members have to take on different responsibilities when a relative is diagnosed with dementia. As the disease progresses, you or others in your family may find the changing roles tough to accept. It may become harder when roles change in some ways, but not in others. When this happens, it can lead to some confusion about how to act. It sometimes takes a while to figure out just who will do what.

Perry interviews Jessica Whittemore, a social worker with Hospice of the Chesapeake. She discusses the necessity of advance care planning, the procedure, and the problems that families may experience when discussing the subject. She also discusses the difficulties that families face when a family member has dementia. She also mentions the signs and behaviors of individuals with dementia, as well as how to deal with them. She went on to explain what a social worker does and why it's crucial when dealing with individuals with dementia and their loved ones.

Key Takeaways

Importance of Advance Care Planning especially with Dementia Patients
The Process of Having an Advance Care Planning Process
The Challenges Faced By Families when Discussing Advance Care Planning
Knowing the Legal Aspects of Advance Care Planning for Patients
Unique Behavioral Challenges to Persons with Dementia
The Challenges and The Change of Family Dynamics Having a Family Member going through Dementia
Symptoms and Behaviors of Dementia Patients based on Jessica's Experience
Differences between a Home Care and a Health Care Provider Facility For the Patient and the Family
Some Advice and Recommendations to Family Members with Dementia Patients
The Important Role of Social Workers in regards To handling Dementia Patients

Quotes

Nobody wants to talk about death. But, you know, it's something that happens. - Jessica

It's hard having a dementia family member since many people don't recognize that they're going through all those grief phases at different times while their loved ones are still alive. - Jessica

You're going to see disagreements with family members because they all want to handle it differently, we all have instincts to handle it differently. - Jessica

Social workers working with patients with dementia, they're key in education, helping families understand what's going on. - Jessica


Featured in this Episode

Jessica Whittemore
LCSW-C, APHSW-C Clinical Practice Specialist
Social Work Hospice of the Chesapeake
Profile: https://education.hospicechesapeake.org/speaker/jessica-whittemore-1288111
Linkedin: https://www.linkedin.com/in/jessica-whittemore-bb49a3b8
Website: https://www.hospicechesapeake.org/
Contact Details: 443 - 837 - 3376

Perry Limes
Director, Strategic Partnerships
Hospice of the Chesapeake
Profile: https://www.hospicechesapeake.org/perry-limes/
Linkedin: https://www.linkedin.com/in/perrylimes

Resources

https://theconversationproject.org/
https://chesapeakesupportivecare.org/

Thanks and Appreciations

We'd like to thank the John & Cathy Belcher Institute for their generous support of our community outreach and education programs.

Chapters

00:00 Introduction
00:55 Jessica's Background and her Profession as a Social Work
03:46 How does Advance Care Planning Work With Dementia Patients?
05:52 The Advance Care Planning Process
06:05 The Challenges when Discussing Advance Care Planning
10:45 The Legal Side of Advance Care Planning
13:37 Unique Behavioral Challenges to Persons with Dementia
15:56 Challenges of Families having a Family member with Dementia
20:18 Symptoms and Behaviors of Dementia Patients based on Jessica's Experience
22:16 Home Care vs Health Care Provider Facility
25:13 Advice and Recommendations to Families with Dementia Patients
34:00 The Important Role of Social Workers in regards To handling Dementia Patients
37:29 How To Reach Jessica
37:54 Thanks and Appreciation

Episode Transcript

(00:08):
Good afternoon, and welcome to life, death and what matters in between.
I'm your host, Perry Limes,and I am joined today by my esteemed
colleague and wonderful human being, JessicaWhitmore. Welcome to the show. Him

(00:31):
so excited to be here. Thanksfor having me, Parry. Awesome,
awesome, And today we're we're goingto look at on our journey with dementia.
Is the perspective through the lens ofa social worker, and Jessica is
a social worker by profession, andI'm gonna let you tell the audience about

(00:53):
yourself. Jessica, sure so,Like Perry said, I am a social
work by profession. I got myundergraduate degree from UMBC and from there I
went and got my masters at umbSchool Social Work in downtown Baltimore, and
I went into it with a specializationin clinical mental health, and that's kind

(01:15):
of where I started out. Iworked in many different settings. I've worked
in a prison, a school,juvenile justice center, detention centers, and
group homes and things like that.But there came a point where I just
had some personal things happening in mylife and I needed a new direction.

(01:40):
And one of my friends was like, Hey, I work at a hospital,
Come work with me. We haven'topening on our oncology unit. And
I was like, I don't knowanything about medical social work. I don't
know anything about anything. It wasawful, but I said, let's do
it. I know you you're fun. Let's just go for it. And
I spent almost five years working atone of the University of Maryland hospitals on

(02:01):
an oncology med search floor, andI found that's where I kind of belonged
in this medical field. Working onthat unit, I found that there is
such a gaping care for people withchronic illness, and I decided I want
to go into palliative care. SoI looked everywhere high and low for palliative
care social work jobs, and atthat point in time, they were few

(02:23):
and far between. And then myfriend that worked at hospices at Chesspeaks like,
hey, we have an opening,and they were kind of suckers and
took me on and now they're stuckwith me. I've been here since twenty
eighteen. I was on their palliativecare team and now I am the clinical

(02:44):
practice specialist for social work for allof hospices at Chesspeak awesomeness. Awesomeness,
Well, thank you, thank youso much for that. So before we
get started, created a composite casescenario with a patient and his name is
Joe, that has dementia. He'scurrently residing with his wife who is forty

(03:07):
wife for forty years at home andat this stage Joe's journey, some of
his behaviors are changing and becoming morechallenging. In addition, his wife,
Ronica is not sure how to talkto their adult children about some of the
decisions that she and Joe have discussedand documented regarding his advanced care planning.

(03:32):
So with that, Jessica, whenwe think of a person with dementia such
as Joe, how does advance careplanning work? Yeah, so, advanced
care planning is important for anybody ofany age, but for someone with the
dementia, I'm going to say it'seven more important because, as we know,

(03:55):
with dementia, you eventually lose yourcapacity to make any type of complex
decisions. So advanced care planning isso important to be done early so that
the patient, for example, Joe, is we are following his wishes,

(04:15):
what he wanted for himself, sothat Veronica is not having to make these
hard choices that these conversations have alreadybeen had and she's not making them when
it's a crisis or when something scaryis happening. When we wait too long
to make these decisions, we oftenmake them and very emotionally charged situations,

(04:43):
and sometimes it's hard to know whatis right, what's the right thing to
do, and the answer there isthere's no right or wrong answer. Everybody
wants something different for themselves. Butif we've not opened is that platform for
them to tell about what medical decisionsthey would want to make in different situations,

(05:04):
and not told them what all theoptions are, it comes down to
people just having to guess and thatcreates so much stress for family members and
the patient's wishes not being followed.So it's really important for everybody to do
it, but especially with dementia becausewe know that's a part of the dementia
that you're gonna need someone to speakfor you and to your wishes. Awesome,

(05:28):
So for the audience out here,and you know, we live in
the world of you can google thisor there's an app for that. With
advanced care planning, how would onego about actually starting this process? But
what does it look like for afamily, and in particularly definitely in Joe's
case, somebody who's on that pathof dementia as well. Absolutely. I

(05:51):
mean, there are probably tons ofapps out there for advanced care planning,
so I will say, just checkthe app database. But the first thing
to do is to really sit downand start thinking about your own wishes,
what you would want for yourself,and start talking about it. That's the

(06:13):
biggest thing you can do is havingthose conversations. There's actually a really good
website called The Conversation Project. SoHiT's say google it, but you know,
go to the Conversation Project dot org, and it's a really good way
to just initiate those conversations. Theseare all scary and hard things to talk
about. Nobody wants to talk aboutend of life. Nobody wants to talk

(06:36):
about death, but you know,it's it's something that happens. There's a
quote by Benjamin Franklin where he saysnothing in life is certain except death and
taxes. And it's very important tomake sure you're you're fully engaged in the

(06:59):
process of your end of life.So talking about it's the first way to
start. If you're not a masterof Google, and you don't want to
go look at things on websites.I suggest talking to your your physician,
say what what does it mean tohave CPR? What does it mean to
be end of life? What doesit mean to be in a vegetative seat?

(07:20):
Those are all different things and theymean something different to all of us,
right, So becoming informed is thebest way to do that, And
the only way to do that isto start talking about these hard things.
And you know, for families outhere, what would what would you find
be? What would be some ofthe challenges that would face families in kind

(07:44):
of having this discussion, Because Iknow Joan Veronica have talked to each other,
but they're probably having a difficult timetalking to their children who are adults.
So what challenges might families face inhaving that advance care planning discussion?
Oh my goodness, so many challenges. And Joe and Veronica are a perfect

(08:07):
example of it. I find alot of times husband and wife have that
connection, especially in older couples,and they've talked about it, but they're
afraid to communicate that to their childreneven when they're adults. Because you know,
if you have kids, you willalways view them at some point of
your babies, right, you're notgonna want to talk to them about the

(08:28):
scary things. The other issue isthat if you have more than one child,
I can almost guarantee you they're goingto have different opinions on things.
Right. They're very different people withtheir own unique personalities, so they're going
to respond differently to the information you'regiving them. And I find that's really
hard for a lot of families.You know, you'll have the one kid

(08:50):
who's very emotional and is going tojust cry through the whole thing, and
you all the other kid who's verypractical, and you know, okay,
dad, thanks forgetting us all laidout for us. It's just a difficult
conversation to have. Like I said, end of life stuff's not easy to
talk about. We're all afraid totalk about death and what choices we would

(09:11):
meet for ourselves. So that's onechallenge is just it's scary to talk about.
You don't want to bother your kidswith it. You don't want to
be burdensome to your family and friends, which is funny because doing it,
your advanced care pulating is the actualopposite. You are unburdening them they're not
having to make those decisions. They'rebe You're making them, and they're just

(09:35):
following your wishes. Other challenges,you know, I think one of the
big one is not understanding all yourmedical options and choices, and you know
what CPR actually does to the bodyand what it does to a healthy body
versus what it does to a bodywho has a chronic illness, right,
and things like that. So reallyjust making sure you get all of your

(09:56):
information and being okay with those emotionallycharged conversations and being okay with this might
not go how I want it togo, but it's so important I'm still
going to have that conversation. Ohthat's that's really really good. Now,
is an advanced care plant? Isit something that can be challenged by children?

(10:18):
Is this a legal document? Isum? How does that stand with
their healthcare providers or let's say,in the legal realm um, as far
as m the wishes of that individual. Yeah, absolutely, So. Advanced
care planning is a very broad term, um, and it's really important to

(10:41):
do the actual document that's called advancedcare directives. Right. So, advanced
care planning is a broad term thatjust covers we're talking about everything, every
situation, what you would want,what you wouldn't want, and we're expressing
our wishes. But those advanced caredirectives are a tangible piece of paper where
you've recorded your wishes. They havetwo parts, both the directive and the

(11:07):
proxy, and that's where that whocan challenge it comes in. Right,
So when you are doing advanced careplanning and you're filling out your advanced directives,
you're going to name someone to speakfor you if you are unable to
speak for yourself. And this isonly dealing with medical decisions. I always
get the question financial things like thatthat you need to talk to an attorney

(11:30):
too. I'm just here to talkabout the medical piece, and the advanced
directive form usually holds up because it'syour wishes. You've designated that person to
talk for you, and the formis very clear. You can check off
different boxes. I want them tofollow this exactly as it says, or
I'm going to give them liberty tochange some of the things I've requested because

(11:54):
they're getting different information from physicians.That's why it's important to hope these conversation.
So whoever you're choosing, is yourhealthcare proxy knows that they're going to
be responsible for these decisions and knowswhat you would want for yourself. So
it is it's it's it's got tobe signed by two witnesses, and those
witnesses can't benefit in your death anyway, right, Like I can't make one

(12:20):
and have my husband and daughter signit, right because they're they're probably going
to be my proxies and have things, you know, So it has to
be two independent witnesses. Um.And it's a portable document. It'll follow
you to every healthy system that yougo to, which is really great because
once you have this conversation and youget these forms done, they live there

(12:43):
and you don't have to keep constantlytalking about death and having those scary conversations.
That's that's awesome. Well, itdefinitely sounds like something that should not
be written on a napkin. Ye, don't write it on a napkin.
Right. ORMs completed, they're readilyavailable. Your healthcare provider will have them

(13:03):
for you if you ask for them. You can also google them, but
your healthcare provider will have them foryou. Do not write it on a
napkin. Nothing like that. Awesome? Awesome, Well, look, I
like to deep dive into Joe becausewe've been following him now and I wanted
to get your perspective on some ofthe unique behavioral challenges that a person with

(13:28):
dementia experiences and what you've experienced inyour role as a social worker. Yeah,
I think you know. People withdementia, it's they have a lot
of unique challenges because a lot oftimes we see their personality altered. Right,

(13:48):
their brains are not functioning the waythey used to function. Things are
not firing the way they used to, so we see a lot of behavior
changes. Things like parano agitation,hallucinations, and even delusions are all things
we commonly see as that dementia progresses, and they can be super scary for

(14:11):
family and friends. You can seetotal I see this all the time personality
changes. Will say, you know, my Seymour never custoday in his life,
and now he's just hurling curse wordsat me all the time, And
I have to have that conversation aboutthat's kind of a normal part of disease
progression. I know it's scary andit's hard, but there are those These

(14:35):
behavioral challenges are fairly unique to dementiaand require a lot of different skill sets
and different ways to manage it.So it's interesting that you discussed that because
we're seeing more and more in mediaand in the news mental health becoming more

(14:56):
prevalent and a spotlight is being puton it. Where actually seeing it in
in UM even in television television showsThis is Us. One of the main
characters, the mom is starting tohave advanced dementia and it's talking about Yes,
absolutely, I also watch like thefirst season, so now I'm gonna

(15:18):
have to go catch up. Youjust spoiler alerted me pairs I spoiler alerted.
But yeah, so this is thefinal season, so no plugs for
This is Us. But yeah,so they they're they're bringing it up and
they're talking about the family dynamics.So so, and it's very compelling as
as an audience we watch this UM, what what are some of the family

(15:41):
dynamics UM that are specifically challenging whenthey're facing somebody that's starting to progress through
this journey of dementia. What haveyou experienced? Yeah, it's it's really
hard and it kind of goes backto what I was saying earlier in terms
of everybody and the family is goingto react differently. Right, You've got

(16:02):
the practical one, the emotional one. We all kind of fall into different
categories and all throughout the spectrum ofit. So it's really hard because some
family members are like, Okay,we can do this, let's go,
and some are, you know,really focusing on different things like eating and
sleeping. Some are focusing on healthconditions. Can we reverse this? Everybody

(16:26):
is in their own different stage alot of times with dementia. It's hard
because a lot of people don't realizebut they're going through that grieving you know,
all those grieving stages at different times, and they're leved ones still here,
and that can be really confusing forfamily and friends and loved ones of

(16:49):
the patient with dementia because they don'tquite understand what's happening. It doesn't feel
like they should be grieving because they'restill here, but loss of personality is
gone, and everyone's going to reactto it differently. I notice with a
lot of these behavioral things we've talkedabout, some people get really really frustrated

(17:11):
and really angry. I don't understandwhy mom's yelling at me. I don't
understand why dad doesn't want to doas crossword puzzles anymore. Eating is a
huge one that I see a lot. A lot of families love to show
their love through food and things likethat, and why is it mom eating

(17:32):
anymore? There's changes are happening,and that's why it's really important to work
so closely with your healthcare provider andhave someone in your corner to help you
through these normal changes of dementia.Right. We know with dementia, your
taste buds change, so you're notgoing to like the things you used to.

(17:52):
We also know that your brain functionsare not firing how they used to,
so you forget at some point howto swallow things like that. We
see patients, you know, God, it took me six hours to feed
mom breakfast today because she just chooseand choose and choose. And you know,
that's something that we see as normal, and it can be very hard

(18:14):
and frustrating for caregivers. This istheir loved one. They they want to
see, you know, them doingwell. I also get a lot of
Mom will only eat rece's, shewon't eat the broccoli, she won't eat
a sandwich, and so it's alot of those her having those conversations about
tea spuds changed and if this iswhat she wants to see what she wants,

(18:37):
you know, we're we're we're moreimportant to talk about what's keeping her
hoppy and grounded rather than forcing herto eat something which can lead to an
increase of those behaviors and increase ofthose of that agitation and hallucination and delusions.
It can be really hard for families. And if those are the issues
where you're going to see disagreements withfamily members because they all want to handle

(19:02):
it differently. We all have instinctsto handle it differently. Wow, that's
it's so challenging because I guess it'sthere's so many varieties and as you say,
not all families handle it the same, but not all patients are the
same when it comes to dementia.So have you seen have you seen like

(19:25):
market differences? So we know Joeis starting to decline, and I know
there's an acceptance for families and lovedones to accept that this decline is happening.
The elevator is not going back up, it is going down, and
it could be a slow, steadydecline where they're watching these changes happen over

(19:45):
time. Do you see any hugeswings, pendulum swings in terms of the
decline, whether it's aggression or justforgetfulness, Is there anything that like sticks
out at your mind when it cometo that I see them sometimes I will
stay With dementia, it's usually moreof a slower decline. And it's really

(20:08):
interesting because the person that lives withthe ptient, that primary caregiver who sees
them day in and day out,is going to notice things first, Right,
Veronica probably notice Joe leaving a cupout and then saying, how come
I happen to have my coffee thismorning? Things like that, Whereas one
of their adult children might come overand Joe's able to articulate and be on

(20:33):
point for the hour that they're visiting, So they'll see things very differently,
and I'll be like, well,what do you mean, mom, He's
not that bad yet, He's notthis So they see things differently. I
will say that at some point,there usually is a huge decline in dementia.
Dementia is a tricky one because you'llsee that big decline and then it'll

(20:55):
kind of plateau out and they'll stabilizeat a different point. And so as
soon as you think this is yournew normal, we're adjusting to life.
There's another decline or a change,and people with dementia are often susceptible to
other injuries and illnesses like UTI's falls, things like that, and when they

(21:17):
get something like that, they don'trecover or bounce back as they would normally,
So that usually leads to a declineas well. So we see that
a lot, and you know,it's it's it's really really difficult. The
challenging behaviors are very hard for um, you know, our patients and our

(21:41):
families to experience. It's hard tosee your loved one looking agitated, you
know, and being agitated. Doyou see a difference in the dementia patient
that is being cared for at homeversus being cared for in a healthcare provider
for facility, let's say a skillednursing facility or an assistant living facility because

(22:04):
the individuals there and it's a differentcaregiver, so professional caregiver versus the family
who normally would be the caregiver.Do you see a difference when it comes
to that cognitive decline and the responseto that intervention? Stue, I'll be
honest, I honestly don't typically seea difference in the decline. I think

(22:27):
the decline rates the same. Ithink that's something family members are so scared
about. Well, if I putmy loved one in a memory care unit
or an assistant living, they're goingto decline faster. It's gonna be so
much harder for them. And Idon't always see that to be true.
But there's no data to support that. It's just my opinion because it's impossible

(22:49):
to do a study where we lookat one person at home in one person
a facility because it's so different.We can't have the same human being in
both settings to compare and contrast.So but in my opinion, I don't
see that there's a more rapid declinein facilities. But what I do see

(23:11):
is that difference in that caregiving.When you are a caregiver twenty four hours
a day, seven days a week, three hundred and sixty five days of
a year of the year, youare likely to get very frustrated. You're
gonna get burnt out, you'll proyou are Also, this is your loved

(23:33):
one, so it's a much moreemotionally charged situation, so you're going to
react very differently than say a staffmember who's only here for an eight hour
shift and then is off to thebeach with her kids. Right Like,
she is trained. She knows thatthis is part of the normal functioning.
If things like that, they geta break. So I do see difference

(23:56):
in responses, and neither one isright or wrong. It's just different.
Um. Being a caregiver is soso hard. Um. And if you
don't get burnt out, you're probablynot doing it right. Um. So
it's it's it's just a natural partof it. So I think it's it's
a lot harder to manage those behaviorsat home because it's it's your loved one,

(24:21):
right Like you're you don't want tosee your husband of forty years.
Veronica does not want to see Joe, you know, throwing a chair or
in envisioning someone outside their house that'snot there, Um, being paranoid and
piecing. She's going to get muchmore emotionally charged from that situation than say
a staff member and assisted living.So that is a difference I see in
the reactions to the behaviors. Also, well that's a perfect segue then,

(24:48):
Um, what do you feel canhelp families and those with dementia as the
disease progresses on UM and we're talkingabout at home, I suppose to in
the professional care setting? What whatwhat would be of support to families dealing
with love loved ones with dementia?Absolutely, I would say there are many

(25:12):
different techniques out there things to do. The very first and most important saying
for families who are caregiving for aloved one with dementia is let go of
some of that guilt. You're allowedto be frustrated, and you're allowed to
be burnt out. Those are normal. Once you accept that, then we

(25:33):
can stop blaming ourselves and moving onthe next thing is stop trying to I
guess like fix someone. I seethat a lot, like maybe if I
just remind him that, you know, his mom's dead and I just keep
doing it, he'll remember, buthe's not going to. So I always
say, let's get to the underlyingissue, right. So, if someone

(25:56):
with dementia is exhibiting a lot ofagitation, a lot of paranoia, a
lot of anything like that, anyof those behaviors, we're talking about,
what is causing that? What isthe root cause? Because a lot of
times it's from an unmet need,but they can't communicate that need anymore.

(26:17):
They don't even fully understand what thatunmet need is. I always say,
it's kind of like, you know, if you have kids, you remember
those toddler stages and that baby stage. They're just crying and you're like,
I gave you a blue cup insteadof a red cup. I'm so sorry.
It doesn't make sense in our brains, but to them it's very distressing.

(26:38):
So when our loved ones with dementiaare agitated, it's usually because something
like that. They don't know what'sgoing on. They're cold, they're hot,
they can't take figure out how totake off their sweater to get cooler.
Like you know, we dress inlayers. If you were outside and
you were sweating, you would takeyour hoodie off and be fine. They

(27:00):
can't figure out how to do thator communicate that, so they're just showing
those agitation behaviors and getting worked up. So if for families, the first
thing I always recommend to do isis check for those things pain, hunger,
thirst, constipation. What's going on? Is there is the room temperature
uncomfortable? Is it an itchy shirt? What's happening? See if you can

(27:23):
pinpoint it, I will say,you can only do that about fifty percent
of the time, So don't beatyourself up, right, But that's those
are the things we want to checkfor first, especially pain. Are they
rubbing the same part of their body? Are they grimacing? What's happening?
Constipation is another big one, right, Like when's the last time? Yeah,
how to BM? Mom? Startthinking about that? It could that

(27:45):
be contributing to it. So let'ssay you did all that. There's no
use, they're still agitated. Youhave all their needs met. That is
when I go back to again whatI can control and what I can't control,
and what's important and what not?Right, Like, I pick your
battle moment. I hate to sayit again, but it's like with a
toddler, right, I need tofigure out what the most important thing is.

(28:07):
And honestly, if you want toeat the same Rese's cups every day
and not eat your broccoli, that'sa battle I'm not going to pick,
right because when we talk about itover and over and say, Mom,
why don't you eat your vegetables?Mom, there's broccoli on your plate.
Mom, have another bite of broccoli. That is going to increase the agitation

(28:30):
rather than letting it go whereas Ifeel my time would be better spent getting
into a getting mom into a showeronce a week, right, because that's
another trigger for a lot of people, because it's a very disconcerting. So
keeping a calm tone, a calmvoice. It's very easy for me to

(28:52):
say this on a podcast behind mydesk because I'm not out there doing it,
and I know it's so hard tofeel like this is the fifth time
today Mom has said where's my dog? And you know this dog's been dead
for twenty years and she's getting agitatedand agitated. Going over and continually reorienting

(29:14):
them doesn't always work. So Italk a lot about another technique called therapeutic
fibbing and distraction. So instead ofsaying, Mom, the dog's dead thirty
times, I always say, tryit a couple times. If it doesn't
work, Mom, the dog isfast asleep. Let's go look at that

(29:36):
birds outside. It's such a beautifulday. Right. You're not lying,
You're the dog is fast asleep somewhere, and you're easing their mind. You're
easing that discomfort, and you're distractingthem to another situation. It's really important
to know what your loved one enjoysand what they like. Is it music?
Is it nature? Is it calming? Time? Hutches? What helps

(30:00):
them in those situations. So whenthey are so agitated, you do not
continue that trauma because it is realto them, all their hallucinations and delusions.
You know, there's no man standingoutside right now, but they believe
it. So let's let's go intoanother room. Let's let's go have lunch.
Oh my goodness, the sun isout. Things like that. So

(30:22):
really doing that calming, reorienting,therapeutic fipping if need be, and distracting,
getting them involved and engaged in somethingelse can be super helpful. I
always call I call it the ruleof threes. I don't know if it's
a real thing, but I alwaystell my families try three times. Hey,

(30:44):
mom, don't forget your broccoli,you know, give it. Give
it to them three times. Ifthey're still saying no, let's move on
from that, right, let's let'schange subjects. Let's not make this a
situation where they're agitated. I dowant to say I know I said it
very first, but you know,always checking for pain, hunger, thirst,
things like that, that's always yourfirst go to a very quick decline

(31:07):
in agitation, Like if they wereperfectly fine and you weren't noticing this symptom
and they've completely changed indicative of likea UTI things like that. So it's
another great reason to have already hadthese conversations with your physician. Right you
can call and say, this iswhat's going on, what do you think?

(31:27):
So it's really important to build thatrelationship with your medical team when you
have a chronic illness so they canguide you through these things. That's awesome.
I love your analogy about the childrenbecause you know therapeutic fibbing. You
know, you think about the toothfairy, you think about the Boogey monster.

(31:47):
You know, we have to talkto our children about things that we
know are not real, but intheir mind it exists. I appreciate that
perspective by like favorite thing to likelet people know, like it's okay to
tell a little a little therapeutic fishbecause yes, little one lives because in

(32:08):
their mind it's so real, andit's so important to validate that experience that
must be so scary. Let's leavethis room if something's happening in here.
Another thing that I think is reallyimportant, say I'm gonna talk for hours.
I'm going to run us over time. It'll be fine, though.
But one of the things I thinkis important is with the paranoia and things

(32:29):
like that, you'll hear a lot, well, my wallet's missing, this
blanket's missing, things like that.I always sell families by three of the
same wallets. That way, ifthey are harping on it, you can
say, here it is. Ihave a lot of patience, especially older
men who were I guess, justin charge of money their whole life,

(32:52):
like my money's missing, my money'smissing. And I've had great success with
putting fake bills in there in thatwallet so they have something tangible. So
it's really important to have those extrathings on hand if they always go missing,
because it really reduces that amount oftrauma to them because we know it's
not missing, we know they justdropped it somewhere, but to them it's

(33:15):
so real, so being able tobring it back is so important. Also,
focusing on things like make sure thetemperature is comfortable, not too warm,
not too cold, having calming musicon, nothing too distracting, things
like that can be really helpful.I think those are my tips. If
I think a more, I'll justinterrupt you. Well, no, that's

(33:35):
awesome. Listen. I don't wantto stray too far, but because you're
a social worker, I would lovefor the audience to understand what the role
of the social worker that they playin regards to the dementia patient and how
you can be an asset to familiesand patient in your profession. Absolutely,

(34:00):
this I can talk about also forhours, because obviously I love social work.
I think social workers are so soimportant when you have a fully rounded
medical team, and that includes likea physician, nurse practitioner, a nurse,
a social worker, spiritual support aswell as like related arts like music,

(34:23):
therapy, things like that. Whenyou have a really good, well
rounded team, the outcomes are goingto be so much better for the patient
and for the loved ones. Socialworkers working with patients with dementia, they're
really key in education, helping familiesunderstand what's going on. This change is

(34:44):
normal, let's talk about it,Let's talk about some tips and tricks.
How are you managing it. They'realso a great support for that family member.
Because I've said it several times onthis podcast, you are gonna get
burned out, You're gonna cry,it's gonna be hard. You're also grieving,
so you're going through that grief process. So having that social worker there,

(35:07):
you know, is great. We'reall licensed therapists, so we're here
to help not just be a resourceto that patient, but really help that
family and that caregiver burnout. Howcan we help you understand what's going on
with your loved one. How canwe make this easier on you, whether
it's just being a supportive ear tolisten or connecting you to resources. There's

(35:30):
so many great community resources out therein terms of real life support groups,
online support groups, even things likejust you know, one time one of
my families was really like, I'mstaying up all night watching my mom because
she keeps pacing and I don't wantsomething to happen. I was like,

(35:51):
why don't we get like a littlecamera for the house. So she's like,
I never thought of that. Thatway, you can you don't have
to keep getting out of bed everytime you hear anything. We can look
at your phone own, right,We can help with those kinds of creative
things, all sorts of resources.There's just a ton of I mean,
you can't live without a social worker. Just just get a good team that

(36:14):
is why. I love well lovedworking on Chesapeak Supportive Care. It was
one of my favorite programs. Soif anybody is listening to this and they're
in Anna Rundell PG or Charles County, I always say call us and ask
for Chesapeake Supportive Care because then youreally do get the whole team. You
get the nurse practitioner, you getthe social worker, you get the chaplain,

(36:37):
you get a registered nurse, andwe're looking at that holistic approach and
trying to make that person feel comfortable. You're not just getting a doctor coming
in and here are some meds tohelp with those behavior changes. You're also
getting that social worker to help providethat psychosocial support and those non pharmological interventions

(36:58):
that can be huge, right,So it's very different. So I always
say call us at CSC because I'mvery passionate about that program, and I
think it's such an advantage, especiallyto any family member who has a loved
one with dementia. It is sucha hard process and a hard journey.
So I always tell people take anyany help you can get awesome. Do

(37:22):
you have a website or a phonenumber for we do? So the website
is Chesapeake Supportivecare dot org. AndI'm going to give you our phone number
four four three eight three seven threethree seven six, and that number will
take you to our office. Thegirls in the office are lovely. We'd

(37:45):
love to provide you more resources ormore support, whatever, whatever you need.
Jessica, you have been amazing.Thank you so so much for your
time, your energy, your wealthof knowledge, and your invaluable service that
you provide to your patients and yourfamilies. Oh my gosh, you're too

(38:07):
nice. Hey, it is itis well deserved. So again, thank
you so much for joining us today. With that, we like to thank
the John and Kathy Belcher Institute fortheir generous support of our community outreach and
education programs. Thank you so muchfor joining us