February 11, 2025 • 32 mins
In this episode of Spotlight on Care, Steve and Virginia explore the complex and often distressing experience of delusions in dementia with David Sultzer, MD, the Clinical Research Director at UCI MIND and professor of Psychiatry & Human Behavior. Dr. Sultzer explains how and when delusions, such as paranoia and misidentification, develop in individuals with dementia and the impact they have on caregivers. He discusses practical approaches for managing these false beliefs, including reassurance, environmental adjustments, and structured routines. The conversation also covers available medications that may help prevent or reduce delusions, along with its potential risks.
Resource: What Are Delusions? These false beliefs can be a symptom of delusional disorder or another condition by Amy Morin, LCSW; Medically reviewed by Steven Gans, MD
https://www.verywellmind.com/definition-of-delusion-4580458docdd
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Steve (00:06):
From the University of California, Irvine. This is UCI
MIND's Spotlight On Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Virginia (00:22):
Welcome to Spotlight On Care. I'm Virginia Naeve, and
I'm here with my wonderfulcohost, Mr. Steve O'Leary. Today
wehave a very interesting topic,and that is when people with
dementia experience delusions.
Before we learn all about thatparticular symptom or syndrome
or disorder, Steve and I like tomake a brief comment about the
(00:43):
topic and our caregivingexperience that we happen to
have had with our loved ones. SoSteve, did your wife Patty
experience delusions?
Steve (00:56):
Yeah, but it wasn't as serious as I've heard from other
support group members I was inand things like that. I think
the kind of comment I've heard-people coming after her, she
would wake up and feel likethere were people in the room,
and anytime she went to a newplace, she would be disoriented
(01:17):
and think that, you know, it wasscary, and I need to get out of
that place. So that was it. Imean, I never had her act out
towards me or those kinds ofactivities, or look at me and
say, "Who the heck are you?" Shewould know who I was. But
anyway, I was very fortunate. Wedidn't have a lot of that.
Virginia (01:37):
Well I didn't know what delusions were. I didn't
know what Alzheimer's was,either. But in the beginning
with mom, she thought everyonewas stealing from her, and she
was at a facility that I put herin later, three months later,
took her out because she hatedit, but I found notes in her
closet that said, "I've caughtyou. Stop stealing from me." And
(01:58):
then I finallygot her into acommunity she liked, but for
like, two weeks, she called methree, four times in a day and
said "Someone stole mytoothbrush." And I wasn't clued
in at this point as to whatyou're supposed to do with
situations like that. And Isaid, "Mom, no one wants your
toothbrush" and she said,"They're stealing it." So I went
(02:21):
and I tied a string onto the endof her toothbrush, and I tied
that to her bathroom cup, anddidn't stop the delusions. Well,
I didn't know that's what it wascalled at the time, but in any
case, and that disappeared aftera couple of weeks, but it was
really annoying. Anyway, let'sget started with our podcast
(02:43):
interview here. Our guest todayis Dr. David Sultzer. He is a
physician, a psychiatrist and aprofessor in the Department of
Psychiatry and Human Behavior inthe UCI School of Medicine. He
is the Clinical ResearchDirector for UCI MIND and leads
the clinical core at the UCIAlzheimer's Disease Research
(03:05):
Center, which is known as theADRC. Welcome, Dr. Sultzer,
we're glad you're here.
David (03:11):
Great. Thanks, Virginia, it's nice to be here. Really
appreciate the opportunity tospeak with you guys, to hear
your perspective, as well aswhat both of you do for UCI MIND
and the community with regard toAlzheimer's disease, care and
caregivers,
Virginia (03:23):
Thank you. We're glad you're here. Let's start with
defining what this is. What isthe definition of delusions?
David (03:30):
Yeah, I think both you, Virginia and Steve have
highlighted what delusions are.
They're defined as falsebeliefs, if you will. We all
have eccentric thoughts now andagain that others might not
agree with. But delusions godeeper than that,beliefs and
things that are persistent, thatcontinue on for a period of time
and are really refractory toinformation to the contrary, you
(03:53):
know, they're just they'refixed, they can't really be
changed. So people withAlzheimer's disease and other
dementias have these persistentbeliefs in different domains,
you've highlighted each commonones of the kinds of topics that
come up. They're false beliefsthat are really difficult to
change their mind and thechallenge is often that they can
lead to things like agitationbecause when you have a false
(04:15):
belief and people are explainingto you over and over why you're
wrong, it tends to get peoplestirred up, and sometimes people
will act on those false beliefs.
Virginia (04:24):
That's why I should have said- well- the director of
our Assisted Living Program camein and she said, "Oh, they're
stealing your toothbrush. Let'scatch that thief." And I
thought, "That's what I'msupposed to say?" Okay, it was
what I was supposed to say.
David (04:41):
Exactly. Yeah, yeah.
Virginia (04:42):
Right? So there are quite a few different types of
delusions. Can you tell us someof the more common ones?
David (04:49):
Yeah. And again, you and Steve have highlighted the most
common ones. Actually, you'redescribing what they are.
They're usually- we think ofthem as two categories. One is
kind of paranoia or theft, orpeople are doing bad things, and
that sometimes comes from asense where they don't remember,
or they're confused andconcerned and don't trustpeople
(05:10):
because they have unfortunatelylost the cognitive machinery to
know what's safe. So there's aninappropriate wariness that kind
of gets into ideas about theft.
We all forget where things are.
It's the human condition toblame others for that, rather
than take responsibility and weall have to acknowledge that.
And yet, when someone has iscognitively impaired, it's just
(05:31):
much more difficult, and there'san easy opportunity to believe
that someone is actuallystealing them, which is
distressing. The other categoryis misidentification, and you
know the idea that people are inthe room, you describe that
people are there, you don'ttrust, that they're disoriented
in a new place. Their houseisn't their home is a pretty
common one that you mentioned,and it's challenging. I mean,
(05:52):
how do you respond to a spouseof many years who says your home
of many years is not your home,and I want to go home and is
pretty upset about it, so it'sreally challenging. Those are
the kind of two categories ofdelusions.
Virginia (06:05):
Okay and they're pretty common. How long do they
last?
David (06:09):
Yeah it's a good question. I mean, they it varies
a lot. Sometimes they'rerelatively fleeting. Sometimes
they'll go on for aperiod oftime, you know, minutes to
hours, and will wane, but thenindividuals will, not
uncommonly, have the same kindsof delusions, come back the next
day, kind of thing. That's whereit becomes a challenge. It's not
just a one time thing,necessarily. They tend to recur,
(06:32):
even if they go away in theshort run.
Steve (06:35):
What's causing those?
What's causing the length tohappen, or the repeat nature of
them?
David (06:40):
Yeah it's a good question, Steve, because it's
not clear. We know, for example,that there's a neurobiology to
delusions. We've done some work.
Others have that have identifiedkind of a cortical signature of
what's going on in those who aremore susceptible to have
delusions versus those whodon't. To get into how long and
why they last for shorter orlonger. Nobody really knows. You
(07:01):
know I think it's just, it's amix of when folks are
cognitively impaired, they don'tremember, `so they lack the
ability to bring reality ontothe table, to be part of it. And
there's the insight piece, Ithink that's the other thing
that we've often thought of isvery important that we all have
unusual thoughts and feelingsover the course of a day, and
(07:21):
can kind of sort them intorealistic, unrealistic on a good
day.
Steve (07:29):
Oh yeah.
David (07:30):
Folks with advanced Alzheimer's disease lack the
capacity to really say-realistically, is that true? You
know I mean, that's really a keypart of it. So it really is
difficult for them to do thatsorting, and they latch on to
that. It's a good question aboutone issue with the
misidentification is people,particularly with Alzheimer's
disease dementia, have a visualperceptive deficit, so their
(07:53):
ability to interpret theirsurroundings is a little bit
more effective than you mightexpect. It's not just memory,
it's the recognition thing. Soit's just distressing, and it's
easier for them to think thattheir spouse has been replaced
by an imposter, because theirpicture of your face isn't what
it used to be. So they're alittle confused by that other
(08:13):
than just the memory of it. Sothere's some characteristic, I
think that's why there arecategories that are much more
common than you'd expect whenyou think of like the breadth of
delusions. Younger people withschizophrenia, for example, have
delusions. Their delusionalthoughts are a whole different
set of categories than olderadults with Alzheimer's disease,
which is interesting. It's notjust a generic false belief
(08:34):
thing. There's something aboutthe illness that begets these
certain types, and the frequencyin time is no one really
understands.
Steve (08:42):
That's interesting, because I think that's a very
common thing we hear fromsupport groups is, "Gee, she
doesn't recognize me, or hedoesn't recognize me, or my
mother doesn't recognize me,"and it's like, well, "How can
that have gone? I mean, theystill have history. I was a
child at one point with them,"or I was, you know, "Married to
them for 40 years. Why have welost that connection?" And it's
(09:04):
very hard. And so what you'resaying is, is that there's a
little disorientation that'soccurring, and it's part of the
disease. It's not them. I mean,it's not you.
David (09:14):
Exactly, it's a misperception. We develop a
picture of the world through oureyes, and we assign meaning to
that and familiarity. Imagine ifyou were looking at the world
through a, you know, translucentpiece of plastic, so you can't
reallysee is that Steve O'Leary?
Steve (09:29):
That might be a good thing.
David (09:31):
Well, that's a different story, a different podcast for
that. And then with thedementia, it's just hard for
them to kind of rebound fromthat, if you will or check it
out, that's the other thing thatdoesn't happen, and it's really
distressing. I mean, that's avery common delusion, and we
notice in clinical practice thatwhen folks aren't able to
(09:51):
recognize their loved onesanymore, it's really distressing
for the families. And often whathappens soon before their placed
elseswhere because being acaregiver depends on having the
feedback that you're doingsomething meaningful.
Virginia (10:06):
Yes.
David (10:06):
And when the person doesn't recognize you, it's
very, very sad, obviously, butalso loses meaning for
caregivers of what's myconnection to this? What's my
role here? And unfortunatelyleads to institutionalization
many times.
Virginia (10:20):
I remember when mom first started really not knowing
me, but she knew I was good. IfI walked into the room, she
couldn't look at me and say Igave birth to her, but she would
look at me and know that Iwasn't going to hurt her.
Steve (10:33):
Yeah, there was a level of trust.
Virginia (10:34):
It's the only way I knew how to describe it.
Steve (10:35):
I remember that towards the end with Patty, she would
start laughing at me. I knowI've told you that story. She'd
see me coming down the hallway.
She didn't know who I was, butshe'd start laughing, because to
her, I was fun, and we'd holdhands for 30 seconds or a minute
and a half and giggle at eachother, and then it was gone. But
yeah, I guess maybe that's whereI'm going in your experience as
the caregiver, what do you dowhen you face that moment where
(10:58):
you've lost that identificationwith them, and they're scared,
or they're afraid. What's thefirst step that I should take as
a caregiver with them?
David (11:11):
you know one is to have your finger on your own pulse
and recognize that this ispretty distressing, that it's
part of the illness. And then Ithink the next most important
thing is the reassurance. Youboth highlight, that people,
(11:31):
even with moderate to severedementia, can understand affect-
the expression of others beyondwhat they see in the person or
the identity, or anything elsethat's really kind of part of
their cognitive setup. So thatwhen you're distressed, I don't
know what your experiences were,but if you're working with
someone with Alzheimer's diseasewho's upset, anxious, perhaps
(11:55):
delusional, agitated, that theyrespond to calming influences by
the people around them. Theaffect is much more important
than the words. Sometimes peoplewith advanced dementia don't
really even understand the wordsthat you're saying, but boy,
they can pick up when you'reupset and angry.
Virginia (12:11):
Yep.
David (12:11):
And so it's managing that affect and being reassuring is
Steve (12:15):
So when you say affect, that's kind of a word I don't
the short answer.
understand. You're referring tomy emotional reaction is what I
can control exactly. The wordsdon't mean as much as- I'm
smiling, I'm okay, I'm relaxed,I'm not irritated. All of those
kinds of things will actuallyhave a calming influence on my
loved ones.
David (12:33):
Absolutely. And folks can pick up on that.
Virginia (12:36):
I should have said, "Oh, let's catch that person who
stole your toothbrush." I shouldhave said that, but I didn't
know atthe time.
David (12:44):
It's hard. Part of the issue here for agitation or
delusions, there's a tendencyfor us to kind of correct
people, and we our friends andfamily members, have various
enthusiasm for that, and we havevarious responses. On the other
hand, there's a natural tendencyto do that, to being kind, and
they're confused, and you wantto help them by saying what's
real. Sometimes that can behelpful, but a lot of times it
(13:06):
doesn't.
Virginia (13:07):
I was trying to be helpful.
David (13:08):
Exactly.
Virginia (13:09):
I really was, but that's not the way to do it when
somebody has Alzheimer's.
David (13:13):
And we're just so trained or behaviorally ingrained to
kind of respond that way. It'san unnatural thing to say "What?
They're stealing yourtoothbrush? We'll get to the
bottom of that!"
Virginia (13:23):
Totally.
David (13:24):
You know, which is the better response and to say, "But
it's okay, we've got moretoothbrushes until we catch that
person." Which is, it's acreative response that we just
don't usually think that way.
Virginia (13:35):
Yeah.
David (13:35):
And that's where, hopefully thinking about these
things and having a little bitof practice with it, for good or
for ill, can be helpful too.
Virginia (13:41):
Do delusions tend to start in the beginning of the
disease, midway through, or moretoward the end?
David (13:48):
They're typically every person is different, and you
know, roughly 30-40% of peoplewith Alzheimer's disease will
have delusions for a period oftime in their illness. It tends
to peak in the mid phase, if youwill, when people are
substantially cognitivelyimpaired, but not many times.
There are fewer delusions inlater stages of dementia, partly
(14:09):
because, sadly, there's not thecognitive capacity to launch a
delusional thought, if you will.
It's just difficult to kind ofinterpret things that way.
Virginia (14:18):
Okay, do delusions- having delusions- does that
indicate other types ofdementia, other than Alzheimer's
or other psychiatric disorders?
David (14:30):
Yeah, in general, in these cases, we're aware that
someone has a cognitive disorderlike Alzheimer's disease, so
that is a good clue. There canbe illnesses like delusional
disorder, which is a psychiatricillness where, typically, older
adults will develop a delusionalsystem outside of a memory
impairment. In that respect,delusions overlap, but we're
talking aboutfolks who havememory difficulty, and people
(14:53):
with delusional disorder, theirmemory is fine. They just have
delusions. And that's arelatively unusual syndrome as
well. The other things toconsider is that other
dementias, like dementia withLewy bodies or Parkinson's
disease with dementia, are moresusceptible to visual
hallucinations, visualillusions, and probably
(15:13):
delusions as well. So when we'reseeing someone early on in the
clinic who's got a lot of visualchanges that are hallucinations,
fairly early on in their courseof illness that we're thinking,
Parkinson's or Lewy bodydementia.
Steve (15:26):
I've heard that about Lewy bodies, and that's a
defining difference of Lewybodies versus Alzheimer's. They
tend to-
Virginia (15:33):
Hallucinate.
Steve (15:34):
-hallucinate and actually act out and much more emotional
about things. Maybe that's thewrong word, but is that what
characterizes the differencebetween or adds to it in terms
of Lewy bodies?
David (15:46):
Yeah, I think the hallucinations are just much
more common. The illness affectsthe visual perception areas of
the brain to a greater extent,and they just misinterpret
things. Interestingly, they'revery formed hallucinations
usually, they're not just vagueimages, but they will tell you,
if you've had friends or familywith Parkinson's disease, for
example, they see small people,and they can tell you exactly
(16:08):
what they look like. They'revery clear.
Virginia (16:10):
They can tell you the color of the buttons on your
shirt.
David (16:12):
Exactly, exactly. So that's a characteristic aspect
of Parkinson's disease, with orwithout dementia or dementia
with Lewy bodies, both of whichhave the same Lewy Body
pathology, just in differentparts of the brain.
Steve (16:26):
You've said a couple of times you're talking about these
different parts of the brain. Isthere a part of the brain where
the delusions actually occurthat's different from other
parts of the brain?
David (16:36):
The short answer is, nobody really knows. I mean,
understanding what part of thebrain controls memory is simple.
There's like four parts of thebrain that are involved with
memory and other parts and thoseareas are necessary and
sufficient. Delusions are likeany other aspect of kind of
higher order thought. It's justa transcortical it's a whole
brain phenomenon. We've donesome work, and some others. I've
(16:58):
identified some. If you look ata group of people with
Alzheimer's disease and sortthem to those with delusions and
those who don't, and then lookat metabolic activity across
their cortex. There are certainparts of the brain that those
with delusions have morehypometabolism or reduced
activity. So there's some hintslike that. The answer there is,
(17:18):
it's the right frontal region aswell as some of the memory
circuits and the temporal lobesas well.
Virginia (17:24):
I know you touched on agitation before, but agitation,
depression, anxiety, are thesethings all causative with
delusions, or just kind of asymptom of the delusion?
David (17:38):
They tend to be somewhat separate actually Virginia, that
there's some people will developanxiety, some will have
depression, some will havedelusions, some will have two of
those. Some will have all three.
It's just a bit of a mix. Youknow, typically anxiety,
depression occur a little bitearlier. In general, this is
whereas, like I mentioned,delusions are a little bit later
in the course of illness. Idon't think there's any evidence
(18:00):
that people who are more anxiousor more depressed or more
susceptible to delusions. Ihesitate there, because if you
have delusional thoughts,they're kind of distressing, so
they're going to be moreanxious. There's not like a
substantial overlap in thosesymptoms.
Virginia (18:15):
Okay, okay, all right, let's start a part of our
discussion about non-medicationinterventions. What can
caregivers keep in mind? And arethere non-medication
interventions that can reduce orprevent dilutions?
David (18:33):
Yeah, it's a great issue, and the field is working hard on
these things- that there's somecaregivers, perhaps like
yourselves, who have been verysuccessful and have learned on
your own how to do it.
Virginia (18:43):
Really on our own.
David (18:44):
Exactly. I mean, there's been a lot of work done, and
there's, I sent you somereferences that people have kind
of looked at strategies. So it'sa complicated question, but the
short answer is, we've touchedon some of them. One, now we're
talking non-medications. One isthe reassurance, you know, with
delusional thought. Distraction.
A key first start, as I'vealluded to already, is don't
argue. When you think about it,if a friend or family member has
(19:07):
a false belief.. Okay? There'sno intervention needed.
Sometimes they lead towardsdistress, anxiety or agitated
behavior, and obviously, thenit's much more important, but to
not argue, and that's somethingthat as a caregiver, you're
overworked and underpaid andjust it's challenging, so it's
easy to argue, because the senseis, if you explain it to them,
(19:31):
they'll understand, and then itwill go away. Sadly, that isn't
gonna work usually.
Virginia (19:37):
It doesn't happen.
Steve (19:38):
Yeah, being right isn't necessarily advantageous.
David (19:42):
It's overrated in general.
Steve (19:45):
But I think that's an important characteristic as
caregivers. And I think you'redescribing this pattern. You
know, the good news about thedisease is it evolves over time,
but as it evolves over time andgets more difficult, and you
need to be more adaptable. Andso it's important that you're
aware that these things aregoing to occur and I think this
is an important part. What wouldyou say- maybe there isn't a
(20:08):
percentage- but do you have anidea of how likely Alzheimer's
patients would developdelusions?
David (20:14):
In broad strokes, about a third, basically, somewhere
between 30%-50% are going tohave delusions for a significant
part of just one day or threedays, but you know, a period of
time of weeks to months wherethey have delusional thoughts.
And it depends on what you meanby delusions, and who's
measuring in the circumstanceand those, for example, in
(20:36):
skilled nursing facilities, it'shigher than that, partly because
people are there, because theyhave delusional thought and
agitated behavior sometimes as aconsequence.
Virginia (20:46):
I was thinking, are there environmental
modifications in the home or ina community that can be made
that would help reducedelusions? I know caregiver
behavior and responses areimportant, but are there
environmental things you can do?
David (21:04):
Yeah, there's a few things. I mean, one thing is
familiarity, that's probably themost important thing. Steve you
mentioned, when a new placefosters delusional thoughts, or
may, just because the person maynot really understand why
they're there, or that what thisplace is? And when you tell
them, "Oh, this is your homenow," that obviously goes
(21:24):
against everything they wouldexpect to hear from you. So it's
a challenge, keeping thingsfamiliar, not changing things
more than need to be changed,making some other environmental
adjustments, things like somepeople respond to mirrors or TV
very poorly. There's a wellknown phenomena, people seeing
their own face in the mirror andbeing convinced that there's a
stranger.
Virginia (21:44):
Scares them.
David (21:44):
Exactly. So no mirrors.
Take the mirrors away.
Virginia (21:48):
I was told with mom, we need to take the mirrors
down.
David (21:52):
Yeah. Same thing with TV.
For some, I won't get intodetail about the horror if TV
was real, if that was actuallyhappening in your room, that
would be really terrifying.
Steve (22:02):
Especially today's program.
Virginia (22:03):
Oh just turn on the news.
David (22:05):
We won't go there. But it's like, you don't want that
happening in your room. And youand I say that's on the TV. It's
overthere. But folks withmoderate to advanced dementia
just, they see it and they justassume that it's there. It's not
real common. But that's anotherenvironmental thing. If you
notice that things like that areprecipitating distress or
delusional thoughts thatobviously to kind of reduce the
(22:27):
exposure to that when possible.
Steve (22:29):
I've got a question for you about the issue of travel.
We're talking about changingenvironments. I know how many
guys in groups that I've been insay, "Well, I wanted to travel.
I wanted to try and takeadvantage of all the good time
that was left," and we've oftensaid, "Well, there's going to be
one final trip. You don't knowwhen it's going to come, you
don't know how it's going tohappen, but all of a sudden
that's going to be the lasttrip." Because even if it's to a
(22:52):
place, in our case, it was to aplace Patty's been to, dozens of
times. And finally, we went toHawaii, and we were in our
condo, and she went, "Where arewe?" And I went, "Are you
kidding? You've been here allthe-." So you said limit the
amount of change that's going onin terms of environment. How do
you decide when that'sappropriate?
David (23:12):
Yeah, it's a great question, Steve, and there is no
simple answer to that. Somepeople enjoy new experiences.
They'regoing to a place that'sfamiliar to them, that will
resonate with them, and you'rehaving a good time too. And as
we're talking about that's agood emotional experience. But
in general, it's the noveltythat really is challenging for
folks. So I encourage folks toreally be conservative in doing
(23:33):
that, in taking trips,particularly long and tiring
trips, because then everythingelse gets more difficult, too,
and losing the sense offamiliarity. I've had many-
around the holidays, forexample, since we're around
that- people want to go to theeast coast to visit lots of
family for the holidays, andmany times, people with moderate
dementia just don't understandwhat that's about. It's just
(23:55):
socially overwhelming. Theydon't exactly recognize
everybody, and that's sociallyawkward for all of us, but when
you have a cognitive disorder,it's even more distressing, and
the idea about having all thegrandkids hanging on you can be
terrifying. So it's really thesecret there, is have a fallback
option too and we encouragefolks for larger social
(24:16):
engagements to have the personwith dementia in a different
room, for example, and people goin, like two or three at a time,
you know-
Steve (24:23):
Small group.
David (24:24):
Exactly, but some of its trial and error, it may turn out
that that's not needed. But justto be aware.
Virginia (24:30):
That's good advice.
David (24:31):
Social would be good, but it isn't necessarily, sadly.
Virginia (24:35):
Right exactly. I learned with mom. There were
times they had to call 911, atthe assisted living facility
because she fainted. There werevarious problems, but the
hospital visit threw hercompletely off. It was bad in
the hospital, but evenaftergetting her back to her room, it
(24:55):
took two to three weeks to gether back to what I would call
okay and normal. If I'd tolearned to say "No, she's not
going to the hospital for that.
"
David (25:04):
No. It's really challenging, because when you
call 911, you know what's goingto happen. And it's really a
tough choice that you have tomake as a caregiver. And gets
into this realm of just tryingto balance things that are
inherently hard to-
Steve (25:16):
Yeah I had that experience with a TAI.
Virginia (25:18):
Oh, did you?
Steve (25:19):
Yeah and I'll never forget that. I mean, she was,
she was out of totally, totallylost, and holding, hugging,
grabbing my hand because shefelt so displaced. And, you
know, they're putting her in anMRI tube, they're doing all of
these things to try and figureout what stroke happened. And
she eventually came totallyback. I mean, amazingly, but
(25:41):
that happens,
David (25:42):
You know, it's really distressing.
Virginia (25:43):
Sure it does. All right, well, let's talk about
medications. We've talked a lotabout non-medication
interventions. Are there any?
Tell us about that David.
David (25:55):
Yeah, it's a challenge there. In general, there aren't
good medicines for managingdelusions. I mean, there just
aren't great medicines for that.
Physicians will sometimes, aftera careful discussion and
attempts using non-medicationstrategies, that's always
important to happen first, toconsider a trial of an atypical
antipsychotic such as Seroquel,Quetiapine, Risperidone,
(26:17):
Risperdal.
Virginia (26:20):
That's the one they put mom on.
David (26:21):
Right, right. And there's a long history, and a lot of
studies have looked at that incontrolled ways. And the bottom
line isthat, on average, therewill be modest benefit at best.
You know, they don't, they'renot curing the delusions,
they're not solving thebehavioral disturbances
unfortunately. On average,there's benefit, but the
magnitude sometimes, bothphysicians and families think
(26:45):
that this is going to solveeverything, and they generally
don't. Everybody's different, sosome people don't respond at
all, and some people will get agreat response, and you don't
necessarily know until you try.
So it may be worth the trial.
But again, the magnitude ofbenefit in general, and what was
your experience? Did it help?
Virginia (27:01):
I had them take her off of was it Seroquel? Is that
how you pronounce it? Oh,Risperidone. Not good at
pronouncing those things. Aftera while, I'm thinking, "Well,
they've already got her on anantidepressant. She's got this
and that." And I thought, "Idon't think we need another
drug." And I wasn't noticing abig benefit.
David (27:20):
Yeah, that's commonly what people say. Sometimes
there's greater benefit,fortunately, but sometimes there
isn't much benefit at all, andmany times it's worth a trial.
But to assume, I think that'sthe challenge in the field, is
just to assume that thesemedicines are going to be the
answer. They really aren't. Andthe side effects also are
something notable we can talkabout that. But all of these
(27:41):
medicines, the antipsychotics,have side effects that can make
things worse, includingcognition. So we want to be
gentle in using psychotropicmeds for sure.
Virginia (27:50):
Okay, okay.
Steve (27:51):
We've heard wives discuss the whole idea of their husbands
acting out, or fathers actingout, this fear that occurs with
the caregiver, and then they gotto do something. They've got to
put them on some drug to managethem, as are terms I hear. Is
this related to the differencebetween size and issues like
(28:12):
that, or is it something moresignificant that exists in men
in terms of their behaviors?
David (28:18):
Yeah, I think it's a great question. Across the
medical literature and my ownexperience, it's an equal
opportunity. Delusions areoccurring about the same. It may
be what you do with thedelusions that are a little bit
more over represented in menversus women. And a colleague
back in my fellowship training,did a study of people's life
history of aggressive behaviorslike well before dementia, and
(28:42):
when people who had thosehistories became demented, they
weremore likely to be agitatedand aggressive. So we become
more like ourselves in a way,you know. So I can make an
analogy to the men versus womenpiece there, but it's hard to
know. And there's not anobvious, overwhelmingly men
versus women. And I think wecould mobilize a hypothesis for
(29:02):
that, but I'm being creativehere.
Steve (29:04):
So you'd probably go back to your same recommendation if,
as a wife or a daughter takingcare of a male, be cautious in
terms of the use of medications.
Try things, see if they work,but don't expect them to
necessarily be the be all andend all.
David (29:20):
Exactly with regard to the medicines and they're many
times, they're worth the trial.
And you have to, every person'sdifferent, and each physician
needs to understand thecircumstances. You know, if it's
a safety issue, then we need tobemore aggressive with
management, including medicationin the thinking that any benefit
would be helpful compare andtherisk is worth it. So it depends
on the circumstances.
Steve (29:41):
Yeah, I'll never forget Patty, who was totally
non-aggressive personality,swung and hit someone.
Virginia (29:47):
Yeah, my mom did too.
Steve (29:48):
Yeah. It was as if they had to do something. It was a
one and only time. And afterthat, it went away. But it was
sure scary for a moment to thinkthat somebody that would have
never raised a hand to anybody.
Virginia (30:01):
Hardly raising her voice.
Steve (30:02):
Yeah, yeah.
Virginia (30:03):
I know it. Well, we're pretty much getting ready to
wrap up here. Dr. Sultzer, isthere anything that you think we
haven't covered, or anything youwant to add?
David (30:14):
I think we've covered most of it. I'll mention while
we're on medication. I mean, thefield is really moving towards
better meds, and there are halfa dozen or more medications that
are currently in trials forthese kinds of behaviors that as
you're aware, there's anexplosion of new information
about treating Alzheimer'sdisease with monoclonal
antibodies, etc. And many of ushave felt that this area has
(30:36):
been under developed and understudied. That's changing. I
mean, there are trials going onthat work through medications
that have a different mechanismthan the anti psychotics. So the
goal is to raise the benefit butfewer side effects, basically.
And so we'll be seeing betteroptions down the road. They're
just not here yet,unfortunately.
Virginia (30:53):
Okay, they take a while. Okay, anything else you
want to add Steve?
Steve (30:58):
Well, I have to tell you, it's just amazing to listen to
you talk about it. And I thoughtof this whole category and like,
"Well, you know, I don't reallyremember a lot of
hallucinations." But when we getinto it, on a day to day basis,
there were a lot of things thatwent on that I just didn't
understand what was happening.
And I think this has been sovaluableto understand that these
acting out, these emotionalperiods that they're going
(31:21):
through, are reality, and youneed to be prepared that they're
going to happen and tone it down- don't overreact.
Virginia (31:28):
That's right, yeah.
David (31:29):
And they're just fundamental expressions of the
illness. It's not the personsadly who's doing this. And you
have to kind of step away fromthat for good or for ill. And it
highlights the challenge ofdoing that. You use the term
disoriented by what you'retrying to respond to. That
exemplifies why caregiving is sochallenging.
Virginia (31:46):
Yeah, exactly true. It feels really odd to go along
with something and you'rethinking, "What the heck?"
David (31:53):
Exactly.
Virginia (31:54):
Anyway, thank you so much, Dr. Sultzer for joining us
today.
Steve (31:58):
Keep up the good work, man.
Virginia (32:00):
No kidding.
David (32:00):
And you guys.
Virginia (32:02):
Aw thank you. I know that you do have some resources
that you like, and we'll putthose in the show notes. For our
listeners, thank you for joiningus today and join us again soon
for another episode of Spotlighton Care.
Steve (32:19):
Spotlight on Care is produced by the University of
California Irvine, Institute onMemory Impairments and
Neurological Disorders (32:24):
UCI MIND. Interviews focus on
personal caregiving journeys andmay not represent the views of
UCI MIND. Individuals concernedabout cognitive disorders,
prevention, or treatment shouldseek expert diagnosis and care.
Pleasesubscribe to the Spotlighton Care podcast wherever you
listen. For more information,visit mind.uci.edu.
From the University of California, Irvine. This is UCI
MIND's Spotlight On Care, thepodcast where we share stories,
experiences, tips and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Virginia (00:22):
Welcome to Spotlight On Care. I'm Virginia Naeve, and
I'm here with my wonderfulcohost, Mr. Steve O'Leary. Today
wehave a very interesting topic,and that is when people with
dementia experience delusions.
Before we learn all about thatparticular symptom or syndrome
or disorder, Steve and I like tomake a brief comment about the
(00:43):
topic and our caregivingexperience that we happen to
have had with our loved ones. SoSteve, did your wife Patty
experience delusions?
Steve (00:56):
Yeah, but it wasn't as serious as I've heard from other
support group members I was inand things like that. I think
the kind of comment I've heard-people coming after her, she
would wake up and feel likethere were people in the room,
and anytime she went to a newplace, she would be disoriented
(01:17):
and think that, you know, it wasscary, and I need to get out of
that place. So that was it. Imean, I never had her act out
towards me or those kinds ofactivities, or look at me and
say, "Who the heck are you?" Shewould know who I was. But
anyway, I was very fortunate. Wedidn't have a lot of that.
Virginia (01:37):
Well I didn't know what delusions were. I didn't
know what Alzheimer's was,either. But in the beginning
with mom, she thought everyonewas stealing from her, and she
was at a facility that I put herin later, three months later,
took her out because she hatedit, but I found notes in her
closet that said, "I've caughtyou. Stop stealing from me." And
(01:58):
then I finallygot her into acommunity she liked, but for
like, two weeks, she called methree, four times in a day and
said "Someone stole mytoothbrush." And I wasn't clued
in at this point as to whatyou're supposed to do with
situations like that. And Isaid, "Mom, no one wants your
toothbrush" and she said,"They're stealing it." So I went
(02:21):
and I tied a string onto the endof her toothbrush, and I tied
that to her bathroom cup, anddidn't stop the delusions. Well,
I didn't know that's what it wascalled at the time, but in any
case, and that disappeared aftera couple of weeks, but it was
really annoying. Anyway, let'sget started with our podcast
(02:43):
interview here. Our guest todayis Dr. David Sultzer. He is a
physician, a psychiatrist and aprofessor in the Department of
Psychiatry and Human Behavior inthe UCI School of Medicine. He
is the Clinical ResearchDirector for UCI MIND and leads
the clinical core at the UCIAlzheimer's Disease Research
(03:05):
Center, which is known as theADRC. Welcome, Dr. Sultzer,
we're glad you're here.
David (03:11):
Great. Thanks, Virginia, it's nice to be here. Really
appreciate the opportunity tospeak with you guys, to hear
your perspective, as well aswhat both of you do for UCI MIND
and the community with regard toAlzheimer's disease, care and
caregivers,
Virginia (03:23):
Thank you. We're glad you're here. Let's start with
defining what this is. What isthe definition of delusions?
David (03:30):
Yeah, I think both you, Virginia and Steve have
highlighted what delusions are.
They're defined as falsebeliefs, if you will. We all
have eccentric thoughts now andagain that others might not
agree with. But delusions godeeper than that,beliefs and
things that are persistent, thatcontinue on for a period of time
and are really refractory toinformation to the contrary, you
(03:53):
know, they're just they'refixed, they can't really be
changed. So people withAlzheimer's disease and other
dementias have these persistentbeliefs in different domains,
you've highlighted each commonones of the kinds of topics that
come up. They're false beliefsthat are really difficult to
change their mind and thechallenge is often that they can
lead to things like agitationbecause when you have a false
(04:15):
belief and people are explainingto you over and over why you're
wrong, it tends to get peoplestirred up, and sometimes people
will act on those false beliefs.
Virginia (04:24):
That's why I should have said- well- the director of
our Assisted Living Program camein and she said, "Oh, they're
stealing your toothbrush. Let'scatch that thief." And I
thought, "That's what I'msupposed to say?" Okay, it was
what I was supposed to say.
David (04:41):
Exactly. Yeah, yeah.
Virginia (04:42):
Right? So there are quite a few different types of
delusions. Can you tell us someof the more common ones?
David (04:49):
Yeah. And again, you and Steve have highlighted the most
common ones. Actually, you'redescribing what they are.
They're usually- we think ofthem as two categories. One is
kind of paranoia or theft, orpeople are doing bad things, and
that sometimes comes from asense where they don't remember,
or they're confused andconcerned and don't trustpeople
(05:10):
because they have unfortunatelylost the cognitive machinery to
know what's safe. So there's aninappropriate wariness that kind
of gets into ideas about theft.
We all forget where things are.
It's the human condition toblame others for that, rather
than take responsibility and weall have to acknowledge that.
And yet, when someone has iscognitively impaired, it's just
(05:31):
much more difficult, and there'san easy opportunity to believe
that someone is actuallystealing them, which is
distressing. The other categoryis misidentification, and you
know the idea that people are inthe room, you describe that
people are there, you don'ttrust, that they're disoriented
in a new place. Their houseisn't their home is a pretty
common one that you mentioned,and it's challenging. I mean,
(05:52):
how do you respond to a spouseof many years who says your home
of many years is not your home,and I want to go home and is
pretty upset about it, so it'sreally challenging. Those are
the kind of two categories ofdelusions.
Virginia (06:05):
Okay and they're pretty common. How long do they
last?
David (06:09):
Yeah it's a good question. I mean, they it varies
a lot. Sometimes they'rerelatively fleeting. Sometimes
they'll go on for aperiod oftime, you know, minutes to
hours, and will wane, but thenindividuals will, not
uncommonly, have the same kindsof delusions, come back the next
day, kind of thing. That's whereit becomes a challenge. It's not
just a one time thing,necessarily. They tend to recur,
(06:32):
even if they go away in theshort run.
Steve (06:35):
What's causing those?
What's causing the length tohappen, or the repeat nature of
them?
David (06:40):
Yeah it's a good question, Steve, because it's
not clear. We know, for example,that there's a neurobiology to
delusions. We've done some work.
Others have that have identifiedkind of a cortical signature of
what's going on in those who aremore susceptible to have
delusions versus those whodon't. To get into how long and
why they last for shorter orlonger. Nobody really knows. You
(07:01):
know I think it's just, it's amix of when folks are
cognitively impaired, they don'tremember, `so they lack the
ability to bring reality ontothe table, to be part of it. And
there's the insight piece, Ithink that's the other thing
that we've often thought of isvery important that we all have
unusual thoughts and feelingsover the course of a day, and
(07:21):
can kind of sort them intorealistic, unrealistic on a good
day.
Steve (07:29):
Oh yeah.
David (07:30):
Folks with advanced Alzheimer's disease lack the
capacity to really say-realistically, is that true? You
know I mean, that's really a keypart of it. So it really is
difficult for them to do thatsorting, and they latch on to
that. It's a good question aboutone issue with the
misidentification is people,particularly with Alzheimer's
disease dementia, have a visualperceptive deficit, so their
(07:53):
ability to interpret theirsurroundings is a little bit
more effective than you mightexpect. It's not just memory,
it's the recognition thing. Soit's just distressing, and it's
easier for them to think thattheir spouse has been replaced
by an imposter, because theirpicture of your face isn't what
it used to be. So they're alittle confused by that other
(08:13):
than just the memory of it. Sothere's some characteristic, I
think that's why there arecategories that are much more
common than you'd expect whenyou think of like the breadth of
delusions. Younger people withschizophrenia, for example, have
delusions. Their delusionalthoughts are a whole different
set of categories than olderadults with Alzheimer's disease,
which is interesting. It's notjust a generic false belief
(08:34):
thing. There's something aboutthe illness that begets these
certain types, and the frequencyin time is no one really
understands.
Steve (08:42):
That's interesting, because I think that's a very
common thing we hear fromsupport groups is, "Gee, she
doesn't recognize me, or hedoesn't recognize me, or my
mother doesn't recognize me,"and it's like, well, "How can
that have gone? I mean, theystill have history. I was a
child at one point with them,"or I was, you know, "Married to
them for 40 years. Why have welost that connection?" And it's
(09:04):
very hard. And so what you'resaying is, is that there's a
little disorientation that'soccurring, and it's part of the
disease. It's not them. I mean,it's not you.
David (09:14):
Exactly, it's a misperception. We develop a
picture of the world through oureyes, and we assign meaning to
that and familiarity. Imagine ifyou were looking at the world
through a, you know, translucentpiece of plastic, so you can't
reallysee is that Steve O'Leary?
Steve (09:29):
That might be a good thing.
David (09:31):
Well, that's a different story, a different podcast for
that. And then with thedementia, it's just hard for
them to kind of rebound fromthat, if you will or check it
out, that's the other thing thatdoesn't happen, and it's really
distressing. I mean, that's avery common delusion, and we
notice in clinical practice thatwhen folks aren't able to
(09:51):
recognize their loved onesanymore, it's really distressing
for the families. And often whathappens soon before their placed
elseswhere because being acaregiver depends on having the
feedback that you're doingsomething meaningful.
Virginia (10:06):
Yes.
David (10:06):
And when the person doesn't recognize you, it's
very, very sad, obviously, butalso loses meaning for
caregivers of what's myconnection to this? What's my
role here? And unfortunatelyleads to institutionalization
many times.
Virginia (10:20):
I remember when mom first started really not knowing
me, but she knew I was good. IfI walked into the room, she
couldn't look at me and say Igave birth to her, but she would
look at me and know that Iwasn't going to hurt her.
Steve (10:33):
Yeah, there was a level of trust.
Virginia (10:34):
It's the only way I knew how to describe it.
Steve (10:35):
I remember that towards the end with Patty, she would
start laughing at me. I knowI've told you that story. She'd
see me coming down the hallway.
She didn't know who I was, butshe'd start laughing, because to
her, I was fun, and we'd holdhands for 30 seconds or a minute
and a half and giggle at eachother, and then it was gone. But
yeah, I guess maybe that's whereI'm going in your experience as
the caregiver, what do you dowhen you face that moment where
(10:58):
you've lost that identificationwith them, and they're scared,
or they're afraid. What's thefirst step that I should take as
a caregiver with them?
David (11:11):
you know one is to have your finger on your own pulse
and recognize that this ispretty distressing, that it's
part of the illness. And then Ithink the next most important
thing is the reassurance. Youboth highlight, that people,
(11:31):
even with moderate to severedementia, can understand affect-
the expression of others beyondwhat they see in the person or
the identity, or anything elsethat's really kind of part of
their cognitive setup. So thatwhen you're distressed, I don't
know what your experiences were,but if you're working with
someone with Alzheimer's diseasewho's upset, anxious, perhaps
(11:55):
delusional, agitated, that theyrespond to calming influences by
the people around them. Theaffect is much more important
than the words. Sometimes peoplewith advanced dementia don't
really even understand the wordsthat you're saying, but boy,
they can pick up when you'reupset and angry.
Virginia (12:11):
Yep.
David (12:11):
And so it's managing that affect and being reassuring is
Steve (12:15):
So when you say affect, that's kind of a word I don't
the short answer.
understand. You're referring tomy emotional reaction is what I
can control exactly. The wordsdon't mean as much as- I'm
smiling, I'm okay, I'm relaxed,I'm not irritated. All of those
kinds of things will actuallyhave a calming influence on my
loved ones.
David (12:33):
Absolutely. And folks can pick up on that.
Virginia (12:36):
I should have said, "Oh, let's catch that person who
stole your toothbrush." I shouldhave said that, but I didn't
know atthe time.
David (12:44):
It's hard. Part of the issue here for agitation or
delusions, there's a tendencyfor us to kind of correct
people, and we our friends andfamily members, have various
enthusiasm for that, and we havevarious responses. On the other
hand, there's a natural tendencyto do that, to being kind, and
they're confused, and you wantto help them by saying what's
real. Sometimes that can behelpful, but a lot of times it
(13:06):
doesn't.
Virginia (13:07):
I was trying to be helpful.
David (13:08):
Exactly.
Virginia (13:09):
I really was, but that's not the way to do it when
somebody has Alzheimer's.
David (13:13):
And we're just so trained or behaviorally ingrained to
kind of respond that way. It'san unnatural thing to say "What?
They're stealing yourtoothbrush? We'll get to the
bottom of that!"
Virginia (13:23):
Totally.
David (13:24):
You know, which is the better response and to say, "But
it's okay, we've got moretoothbrushes until we catch that
person." Which is, it's acreative response that we just
don't usually think that way.
Virginia (13:35):
Yeah.
David (13:35):
And that's where, hopefully thinking about these
things and having a little bitof practice with it, for good or
for ill, can be helpful too.
Virginia (13:41):
Do delusions tend to start in the beginning of the
disease, midway through, or moretoward the end?
David (13:48):
They're typically every person is different, and you
know, roughly 30-40% of peoplewith Alzheimer's disease will
have delusions for a period oftime in their illness. It tends
to peak in the mid phase, if youwill, when people are
substantially cognitivelyimpaired, but not many times.
There are fewer delusions inlater stages of dementia, partly
(14:09):
because, sadly, there's not thecognitive capacity to launch a
delusional thought, if you will.
It's just difficult to kind ofinterpret things that way.
Virginia (14:18):
Okay, do delusions- having delusions- does that
indicate other types ofdementia, other than Alzheimer's
or other psychiatric disorders?
David (14:30):
Yeah, in general, in these cases, we're aware that
someone has a cognitive disorderlike Alzheimer's disease, so
that is a good clue. There canbe illnesses like delusional
disorder, which is a psychiatricillness where, typically, older
adults will develop a delusionalsystem outside of a memory
impairment. In that respect,delusions overlap, but we're
talking aboutfolks who havememory difficulty, and people
(14:53):
with delusional disorder, theirmemory is fine. They just have
delusions. And that's arelatively unusual syndrome as
well. The other things toconsider is that other
dementias, like dementia withLewy bodies or Parkinson's
disease with dementia, are moresusceptible to visual
hallucinations, visualillusions, and probably
(15:13):
delusions as well. So when we'reseeing someone early on in the
clinic who's got a lot of visualchanges that are hallucinations,
fairly early on in their courseof illness that we're thinking,
Parkinson's or Lewy bodydementia.
Steve (15:26):
I've heard that about Lewy bodies, and that's a
defining difference of Lewybodies versus Alzheimer's. They
tend to-
Virginia (15:33):
Hallucinate.
Steve (15:34):
-hallucinate and actually act out and much more emotional
about things. Maybe that's thewrong word, but is that what
characterizes the differencebetween or adds to it in terms
of Lewy bodies?
David (15:46):
Yeah, I think the hallucinations are just much
more common. The illness affectsthe visual perception areas of
the brain to a greater extent,and they just misinterpret
things. Interestingly, they'revery formed hallucinations
usually, they're not just vagueimages, but they will tell you,
if you've had friends or familywith Parkinson's disease, for
example, they see small people,and they can tell you exactly
(16:08):
what they look like. They'revery clear.
Virginia (16:10):
They can tell you the color of the buttons on your
shirt.
David (16:12):
Exactly, exactly. So that's a characteristic aspect
of Parkinson's disease, with orwithout dementia or dementia
with Lewy bodies, both of whichhave the same Lewy Body
pathology, just in differentparts of the brain.
Steve (16:26):
You've said a couple of times you're talking about these
different parts of the brain. Isthere a part of the brain where
the delusions actually occurthat's different from other
parts of the brain?
David (16:36):
The short answer is, nobody really knows. I mean,
understanding what part of thebrain controls memory is simple.
There's like four parts of thebrain that are involved with
memory and other parts and thoseareas are necessary and
sufficient. Delusions are likeany other aspect of kind of
higher order thought. It's justa transcortical it's a whole
brain phenomenon. We've donesome work, and some others. I've
(16:58):
identified some. If you look ata group of people with
Alzheimer's disease and sortthem to those with delusions and
those who don't, and then lookat metabolic activity across
their cortex. There are certainparts of the brain that those
with delusions have morehypometabolism or reduced
activity. So there's some hintslike that. The answer there is,
(17:18):
it's the right frontal region aswell as some of the memory
circuits and the temporal lobesas well.
Virginia (17:24):
I know you touched on agitation before, but agitation,
depression, anxiety, are thesethings all causative with
delusions, or just kind of asymptom of the delusion?
David (17:38):
They tend to be somewhat separate actually Virginia, that
there's some people will developanxiety, some will have
depression, some will havedelusions, some will have two of
those. Some will have all three.
It's just a bit of a mix. Youknow, typically anxiety,
depression occur a little bitearlier. In general, this is
whereas, like I mentioned,delusions are a little bit later
in the course of illness. Idon't think there's any evidence
(18:00):
that people who are more anxiousor more depressed or more
susceptible to delusions. Ihesitate there, because if you
have delusional thoughts,they're kind of distressing, so
they're going to be moreanxious. There's not like a
substantial overlap in thosesymptoms.
Virginia (18:15):
Okay, okay, all right, let's start a part of our
discussion about non-medicationinterventions. What can
caregivers keep in mind? And arethere non-medication
interventions that can reduce orprevent dilutions?
David (18:33):
Yeah, it's a great issue, and the field is working hard on
these things- that there's somecaregivers, perhaps like
yourselves, who have been verysuccessful and have learned on
your own how to do it.
Virginia (18:43):
Really on our own.
David (18:44):
Exactly. I mean, there's been a lot of work done, and
there's, I sent you somereferences that people have kind
of looked at strategies. So it'sa complicated question, but the
short answer is, we've touchedon some of them. One, now we're
talking non-medications. One isthe reassurance, you know, with
delusional thought. Distraction.
A key first start, as I'vealluded to already, is don't
argue. When you think about it,if a friend or family member has
(19:07):
a false belief.. Okay? There'sno intervention needed.
Sometimes they lead towardsdistress, anxiety or agitated
behavior, and obviously, thenit's much more important, but to
not argue, and that's somethingthat as a caregiver, you're
overworked and underpaid andjust it's challenging, so it's
easy to argue, because the senseis, if you explain it to them,
(19:31):
they'll understand, and then itwill go away. Sadly, that isn't
gonna work usually.
Virginia (19:37):
It doesn't happen.
Steve (19:38):
Yeah, being right isn't necessarily advantageous.
David (19:42):
It's overrated in general.
Steve (19:45):
But I think that's an important characteristic as
caregivers. And I think you'redescribing this pattern. You
know, the good news about thedisease is it evolves over time,
but as it evolves over time andgets more difficult, and you
need to be more adaptable. Andso it's important that you're
aware that these things aregoing to occur and I think this
is an important part. What wouldyou say- maybe there isn't a
(20:08):
percentage- but do you have anidea of how likely Alzheimer's
patients would developdelusions?
David (20:14):
In broad strokes, about a third, basically, somewhere
between 30%-50% are going tohave delusions for a significant
part of just one day or threedays, but you know, a period of
time of weeks to months wherethey have delusional thoughts.
And it depends on what you meanby delusions, and who's
measuring in the circumstanceand those, for example, in
(20:36):
skilled nursing facilities, it'shigher than that, partly because
people are there, because theyhave delusional thought and
agitated behavior sometimes as aconsequence.
Virginia (20:46):
I was thinking, are there environmental
modifications in the home or ina community that can be made
that would help reducedelusions? I know caregiver
behavior and responses areimportant, but are there
environmental things you can do?
David (21:04):
Yeah, there's a few things. I mean, one thing is
familiarity, that's probably themost important thing. Steve you
mentioned, when a new placefosters delusional thoughts, or
may, just because the person maynot really understand why
they're there, or that what thisplace is? And when you tell
them, "Oh, this is your homenow," that obviously goes
(21:24):
against everything they wouldexpect to hear from you. So it's
a challenge, keeping thingsfamiliar, not changing things
more than need to be changed,making some other environmental
adjustments, things like somepeople respond to mirrors or TV
very poorly. There's a wellknown phenomena, people seeing
their own face in the mirror andbeing convinced that there's a
stranger.
Virginia (21:44):
Scares them.
David (21:44):
Exactly. So no mirrors.
Take the mirrors away.
Virginia (21:48):
I was told with mom, we need to take the mirrors
down.
David (21:52):
Yeah. Same thing with TV.
For some, I won't get intodetail about the horror if TV
was real, if that was actuallyhappening in your room, that
would be really terrifying.
Steve (22:02):
Especially today's program.
Virginia (22:03):
Oh just turn on the news.
David (22:05):
We won't go there. But it's like, you don't want that
happening in your room. And youand I say that's on the TV. It's
overthere. But folks withmoderate to advanced dementia
just, they see it and they justassume that it's there. It's not
real common. But that's anotherenvironmental thing. If you
notice that things like that areprecipitating distress or
delusional thoughts thatobviously to kind of reduce the
(22:27):
exposure to that when possible.
Steve (22:29):
I've got a question for you about the issue of travel.
We're talking about changingenvironments. I know how many
guys in groups that I've been insay, "Well, I wanted to travel.
I wanted to try and takeadvantage of all the good time
that was left," and we've oftensaid, "Well, there's going to be
one final trip. You don't knowwhen it's going to come, you
don't know how it's going tohappen, but all of a sudden
that's going to be the lasttrip." Because even if it's to a
(22:52):
place, in our case, it was to aplace Patty's been to, dozens of
times. And finally, we went toHawaii, and we were in our
condo, and she went, "Where arewe?" And I went, "Are you
kidding? You've been here allthe-." So you said limit the
amount of change that's going onin terms of environment. How do
you decide when that'sappropriate?
David (23:12):
Yeah, it's a great question, Steve, and there is no
simple answer to that. Somepeople enjoy new experiences.
They'regoing to a place that'sfamiliar to them, that will
resonate with them, and you'rehaving a good time too. And as
we're talking about that's agood emotional experience. But
in general, it's the noveltythat really is challenging for
folks. So I encourage folks toreally be conservative in doing
(23:33):
that, in taking trips,particularly long and tiring
trips, because then everythingelse gets more difficult, too,
and losing the sense offamiliarity. I've had many-
around the holidays, forexample, since we're around
that- people want to go to theeast coast to visit lots of
family for the holidays, andmany times, people with moderate
dementia just don't understandwhat that's about. It's just
(23:55):
socially overwhelming. Theydon't exactly recognize
everybody, and that's sociallyawkward for all of us, but when
you have a cognitive disorder,it's even more distressing, and
the idea about having all thegrandkids hanging on you can be
terrifying. So it's really thesecret there, is have a fallback
option too and we encouragefolks for larger social
(24:16):
engagements to have the personwith dementia in a different
room, for example, and people goin, like two or three at a time,
you know-
Steve (24:23):
Small group.
David (24:24):
Exactly, but some of its trial and error, it may turn out
that that's not needed. But justto be aware.
Virginia (24:30):
That's good advice.
David (24:31):
Social would be good, but it isn't necessarily, sadly.
Virginia (24:35):
Right exactly. I learned with mom. There were
times they had to call 911, atthe assisted living facility
because she fainted. There werevarious problems, but the
hospital visit threw hercompletely off. It was bad in
the hospital, but evenaftergetting her back to her room, it
(24:55):
took two to three weeks to gether back to what I would call
okay and normal. If I'd tolearned to say "No, she's not
going to the hospital for that.
"
David (25:04):
No. It's really challenging, because when you
call 911, you know what's goingto happen. And it's really a
tough choice that you have tomake as a caregiver. And gets
into this realm of just tryingto balance things that are
inherently hard to-
Steve (25:16):
Yeah I had that experience with a TAI.
Virginia (25:18):
Oh, did you?
Steve (25:19):
Yeah and I'll never forget that. I mean, she was,
she was out of totally, totallylost, and holding, hugging,
grabbing my hand because shefelt so displaced. And, you
know, they're putting her in anMRI tube, they're doing all of
these things to try and figureout what stroke happened. And
she eventually came totallyback. I mean, amazingly, but
(25:41):
that happens,
David (25:42):
You know, it's really distressing.
Virginia (25:43):
Sure it does. All right, well, let's talk about
medications. We've talked a lotabout non-medication
interventions. Are there any?
Tell us about that David.
David (25:55):
Yeah, it's a challenge there. In general, there aren't
good medicines for managingdelusions. I mean, there just
aren't great medicines for that.
Physicians will sometimes, aftera careful discussion and
attempts using non-medicationstrategies, that's always
important to happen first, toconsider a trial of an atypical
antipsychotic such as Seroquel,Quetiapine, Risperidone,
(26:17):
Risperdal.
Virginia (26:20):
That's the one they put mom on.
David (26:21):
Right, right. And there's a long history, and a lot of
studies have looked at that incontrolled ways. And the bottom
line isthat, on average, therewill be modest benefit at best.
You know, they don't, they'renot curing the delusions,
they're not solving thebehavioral disturbances
unfortunately. On average,there's benefit, but the
magnitude sometimes, bothphysicians and families think
(26:45):
that this is going to solveeverything, and they generally
don't. Everybody's different, sosome people don't respond at
all, and some people will get agreat response, and you don't
necessarily know until you try.
So it may be worth the trial.
But again, the magnitude ofbenefit in general, and what was
your experience? Did it help?
Virginia (27:01):
I had them take her off of was it Seroquel? Is that
how you pronounce it? Oh,Risperidone. Not good at
pronouncing those things. Aftera while, I'm thinking, "Well,
they've already got her on anantidepressant. She's got this
and that." And I thought, "Idon't think we need another
drug." And I wasn't noticing abig benefit.
David (27:20):
Yeah, that's commonly what people say. Sometimes
there's greater benefit,fortunately, but sometimes there
isn't much benefit at all, andmany times it's worth a trial.
But to assume, I think that'sthe challenge in the field, is
just to assume that thesemedicines are going to be the
answer. They really aren't. Andthe side effects also are
something notable we can talkabout that. But all of these
(27:41):
medicines, the antipsychotics,have side effects that can make
things worse, includingcognition. So we want to be
gentle in using psychotropicmeds for sure.
Virginia (27:50):
Okay, okay.
Steve (27:51):
We've heard wives discuss the whole idea of their husbands
acting out, or fathers actingout, this fear that occurs with
the caregiver, and then they gotto do something. They've got to
put them on some drug to managethem, as are terms I hear. Is
this related to the differencebetween size and issues like
(28:12):
that, or is it something moresignificant that exists in men
in terms of their behaviors?
David (28:18):
Yeah, I think it's a great question. Across the
medical literature and my ownexperience, it's an equal
opportunity. Delusions areoccurring about the same. It may
be what you do with thedelusions that are a little bit
more over represented in menversus women. And a colleague
back in my fellowship training,did a study of people's life
history of aggressive behaviorslike well before dementia, and
(28:42):
when people who had thosehistories became demented, they
weremore likely to be agitatedand aggressive. So we become
more like ourselves in a way,you know. So I can make an
analogy to the men versus womenpiece there, but it's hard to
know. And there's not anobvious, overwhelmingly men
versus women. And I think wecould mobilize a hypothesis for
(29:02):
that, but I'm being creativehere.
Steve (29:04):
So you'd probably go back to your same recommendation if,
as a wife or a daughter takingcare of a male, be cautious in
terms of the use of medications.
Try things, see if they work,but don't expect them to
necessarily be the be all andend all.
David (29:20):
Exactly with regard to the medicines and they're many
times, they're worth the trial.
And you have to, every person'sdifferent, and each physician
needs to understand thecircumstances. You know, if it's
a safety issue, then we need tobemore aggressive with
management, including medicationin the thinking that any benefit
would be helpful compare andtherisk is worth it. So it depends
on the circumstances.
Steve (29:41):
Yeah, I'll never forget Patty, who was totally
non-aggressive personality,swung and hit someone.
Virginia (29:47):
Yeah, my mom did too.
Steve (29:48):
Yeah. It was as if they had to do something. It was a
one and only time. And afterthat, it went away. But it was
sure scary for a moment to thinkthat somebody that would have
never raised a hand to anybody.
Virginia (30:01):
Hardly raising her voice.
Steve (30:02):
Yeah, yeah.
Virginia (30:03):
I know it. Well, we're pretty much getting ready to
wrap up here. Dr. Sultzer, isthere anything that you think we
haven't covered, or anything youwant to add?
David (30:14):
I think we've covered most of it. I'll mention while
we're on medication. I mean, thefield is really moving towards
better meds, and there are halfa dozen or more medications that
are currently in trials forthese kinds of behaviors that as
you're aware, there's anexplosion of new information
about treating Alzheimer'sdisease with monoclonal
antibodies, etc. And many of ushave felt that this area has
(30:36):
been under developed and understudied. That's changing. I
mean, there are trials going onthat work through medications
that have a different mechanismthan the anti psychotics. So the
goal is to raise the benefit butfewer side effects, basically.
And so we'll be seeing betteroptions down the road. They're
just not here yet,unfortunately.
Virginia (30:53):
Okay, they take a while. Okay, anything else you
want to add Steve?
Steve (30:58):
Well, I have to tell you, it's just amazing to listen to
you talk about it. And I thoughtof this whole category and like,
"Well, you know, I don't reallyremember a lot of
hallucinations." But when we getinto it, on a day to day basis,
there were a lot of things thatwent on that I just didn't
understand what was happening.
And I think this has been sovaluableto understand that these
acting out, these emotionalperiods that they're going
(31:21):
through, are reality, and youneed to be prepared that they're
going to happen and tone it down- don't overreact.
Virginia (31:28):
That's right, yeah.
David (31:29):
And they're just fundamental expressions of the
illness. It's not the personsadly who's doing this. And you
have to kind of step away fromthat for good or for ill. And it
highlights the challenge ofdoing that. You use the term
disoriented by what you'retrying to respond to. That
exemplifies why caregiving is sochallenging.
Virginia (31:46):
Yeah, exactly true. It feels really odd to go along
with something and you'rethinking, "What the heck?"
David (31:53):
Exactly.
Virginia (31:54):
Anyway, thank you so much, Dr. Sultzer for joining us
today.
Steve (31:58):
Keep up the good work, man.
Virginia (32:00):
No kidding.
David (32:00):
And you guys.
Virginia (32:02):
Aw thank you. I know that you do have some resources
that you like, and we'll putthose in the show notes. For our
listeners, thank you for joiningus today and join us again soon
for another episode of Spotlighton Care.
Steve (32:19):
Spotlight on Care is produced by the University of
California Irvine, Institute onMemory Impairments and
Neurological Disorders (32:24):
UCI MIND. Interviews focus on
personal caregiving journeys andmay not represent the views of
UCI MIND. Individuals concernedabout cognitive disorders,
prevention, or treatment shouldseek expert diagnosis and care.
Pleasesubscribe to the Spotlighton Care podcast wherever you
listen. For more information,visit mind.uci.edu.
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