August 12, 2025 • 21 mins
In this episode, co-hosts Steve and Virginia welcome back Valerie George and Sonia Sehgal to discuss the GUIDE program (Guiding and Improved Dementia Experience), a groundbreaking care initiative launched by CMS in 2023. The GUIDE program offers comprehensive, long-term support for both people living with dementia and their unpaid caregivers, recognizing the significant burden caregivers face. Over the course of eight years, participants receive structured assessments, caregiver support services, and coordinated care management through a multidisciplinary team. Valerie and Sonia share insights into how GUIDE operates, eligibility requirements, and the vital role of caregiver empowerment.
Listeners will learn how caregivers can access this resource, what makes GUIDE unique, and how it brings essential services directly to those in need.
To learn more: https://www.cms.gov/priorities/innovation/innovation-models/guide
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Steve (00:06):
From the University of California, Irvine. This is UCI
MINDS's Spotlight on Care, thepodcast where we share stories,
experiences, tips, and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Hello everybody! We're excitedtoday, as we usually are, about
(00:26):
these sessions. This is kind offascinating because we're going
to do a follow up session herewith the two ladies that we had
from our previous Spotlight onCare episode where we talked
about the value and theimportance of geriatricians. Now
we're going to talk a little bitabout a new program that's been
introduced by CMS, which I neverunderstand what it stands for,
(00:46):
but we'll get to that for asecond. So I want to let
everybody know that we haveValerie George back with us and
Sonia Sehgal. Let's start withwhat a quick overview of what
the GUIDE program is and why CMShas decided to start it.
Valerie (01:02):
Okay, so CMS is the Centers for Medicare and
Medicaid service, and it'sthrough the national government
they have come up with a projector a plan to work with patients
who have dementia and theircaregivers. It is called GUIDE.
And GUIDE stands for (01:17):
Guiding and Improved Dementia
Experience. This is a programthat was introduced back in
2023. So CMS has decided to workon this project because we know,
as people get older and theyhave dementia, they also
havecaregivers that take care ofthem, and we know that there's a
(01:38):
high level stress that goesalong with caregivers who are
taking care of their loved ones.
So the GUIDE program is acomprehensive evaluation that is
seen for both the patients withdementia and their caregivers.
They come in as a dyad.
Steve (01:52):
But what's a dyad?
Valerie (01:53):
Dyad is two people, so a dyad is a patient with a
dementia and their caregiver. Soit's a pretty involved exam, and
then we follow them. Theprogram, I believe, is for eight
years. So it just started inJuly of last year, and we're
coming into the full year ofthis year.
Sonia (02:10):
Yeah, it's unique, because it's the first time that
we have a formal program thatallows us to provide care, not
only to the patient, but theircaregiver, for all the reasons
that Val is saying, I mean, it'sa high stress 24/7 job, and the
program allows for participantsin the GUIDE program to really
provide very specific,well-rounded care to
(02:30):
thecaregiver.
Steve (02:30):
So it's really about a program for both and really
geared towards helping thecaregiver be a better caregiver,
because that can really help theprocess of the care that the
patient gets. Is that theconcept?
Sonia (02:44):
Absolutely. And it's not meant to replace care provided
by a neurologist or a primarycare clinician or a
geriatrician. It's really anadded benefit.
Steve (02:55):
Okay, well, let's go through some of the details of
what GUIDE is providing to acaregiver. You said eight years,
that sounds like a long time. IfI'm a caregiver, and you're
talking to me and you're saying,"Hey, this is the end benefit of
what you're going to get, or thesteps that you're going to
take."
Valerie (03:09):
So a patient is referred to us, they have to
have a diagnosis of dementia,and they have to have a non-paid
caregiver. So it could be ahusband, it could be a wife, a
family member who helpsparticipate in care. It could be
their activities of daily livingor their instrumental activities
of daily living. They can alsohave paid caregivers, but they
may also have to orchestratethat.
Steve (03:31):
Somebody who's in charge.
Valerie (03:32):
Yes, and part of the program is we do surveys with
the caregivers to understandtheir burden that they're
feeling. We also participate ina neuropsych inventory to talk
about hallucinations ordelusions or things that they
may be having behavioral. Wealso score them of their
different abilities to doactivities of daily living or
(03:53):
their instrumental activities.
Once we do all these things,then we also interview the
caregiver. So I've had patientsthat they're going along, and
the caregiver is in thebackground, silent, right? And
you're talking, and then I'mdoing the look, as Dr. Sehgal
said, we look at the patient,but then just adjacent, I'm
glancing at the caregiver,they're nodding their head, no,
(04:14):
yes, or I'll say, "Oh, what doyou think?" "Oh, I'm just, I'm
not gonna-" because they don'twant to upset their loved ones.
And I know right there, thatthat caregiver is stress beyond
belief. And so it may be that Ihave to call them separately.
Sometimes I've had an hourinterview with a caregiver after
the visit, because it's just somuch is going on and they can't
say it in front of their lovedone. It's a very in-depth
(04:36):
program. There's a lot of followup. A lot of it is more with the
caregiver than the patient,trying to make sure that they
have resources. If there'sanything that's going on and
they're hospitalized or ER,we're notified. There's a 24/7
hotline that they need aquestion about their dementia
care, or there's something goingonthat we're available to help
them go through that process.
Virginia (04:59):
I have a question.
When you said eight years, isthis a test program that they're
gonna test to see if it's worthimplementing forever? Are they
testing for eight years? Or whatis that eight year thing?
Sonia (05:11):
It's a pilot program right now.
Virginia (05:13):
Pilot.
Sonia (05:13):
It's a pilot program.
Virginia (05:15):
Got it.
Valerie (05:15):
It's only funded, let's say maybe for eight years.
Virginia (05:18):
Okay.
Sonia (05:18):
So it is a pilot program, and hopefully we will show some
benefit nationally throughparticipation. But I think to
answer your question just sortof from a high level view, it's
intensive case management of theindividual who is living with a
dementing illness and theircaregiver. And so this
comprehensive case managementlooks at what stage is the
(05:40):
dementia? How significant arethe symptoms of the cognitive
impairment? Is there a highburden because there are
unmanaged symptoms, and whatkind of social support is the
patient and caregiver receiving?
And is there a deficit ineducation? So can we provide
education to the caregiver? Dothey need some training on
communication skills, self care?
(06:01):
Do they need a support group? Sowe work to connect them with
these types of resources. Andthen Valerie and her team are
available to assist primary careclinicians and geriatricians and
neurologists on behaviormanagement, medical management.
There are unique things thathappen when patients are
hospitalized. Her team'savailable to help manage that.
(06:22):
And then should a caregiver justreally be at the point where
they need respite services? Wework to connect them with
respite services as well.
Steve (06:30):
Well it sounds like there's a care team involved in
this as well. Is it the samecare team that you were involved
in? Or is this different?
Valerie (06:38):
There's a dementia care specialist, and that's my title.
I have a dementia care associatethat works with me, assistant.
We have a social worker who isavailable to us. In our team in
general, we also have, there's alot of data that is collected,
so we have a team that we haveto report to different points of
interest that CMS is requiring.
If there is a problem, ourprogram actually is under
(07:00):
population health within our UCIprogram, so we also have their
capability if we need help withresources and things. So there's
kind of a group.
Sonia (07:11):
Yeah, so I think, to your point, though, I mean, at the
Senior Health Center, the GUIDEteam does have access to all of
the team at Senior HealthCenter, including
neuropsychology, social work,our nursing staff, etc. But
Valerie's a dementia carespecialist. She has a dementia
care assistant. We have someonein patient education. We have a
social worker who is doingsupport groups. So we partner
(07:32):
with our social work team atUCI, our population health team.
They have health coaches, andthen we have our own staff at
the Senior Health Center.
Steve (07:40):
So let's see if we can draw a line here, because you
guys did a wonderful job ofexplaining the depth and quality
of the geriatricians role andwhy they're such an incredible
resource for people, to somedegree where it felt like you
got a little involved with thecaregiver. This sounds like it's
dramatically more about helpingthe caregiver as well as the
(08:02):
patient, is that the keydelineation between what you
would normally provide versusthe care?
Sonia (08:08):
I think that's part of it, but the other part is the
program allows for the dementiacare team to proactively reach
out to participants. Sogenerally, in medicine, the
patient or caregiver, they call,they schedule an appointment
because something's going on. Aspart of this program, Valerie
and her dementia care assistantevery month are making outreach
(08:32):
touch points, whether that be avisit or a phone call to say,
"Hey, like, is everything goingwell? Because if it is
wonderful, we'll touch base withyou again next month." But if
not, what's not, so that we canproactively get you in touch
with resources, get you in touchwith your own PCP, find ways to
support you with the hope ofpreventing caregiver burnout and
(08:52):
really staying one step ahead ofthe process of the condition.
Steve (08:56):
I'm going to ask you a question about, what's the hope
of this program in a second. Butlet's talk about, are there any
limits to this service? Is thereany insurance issues that you
need to be aware of?
Valerie (09:07):
Yes, you have to have Medicare A and B as your
primary. YTou cannot have aMedicare Advantage Program. So
Medicare A and B. You can have asecondary, like Blue Cross, Blue
Shield. There is no HMO allowed.
You can have like Medicare andMedi-Cal, that's allowable.
Can't be in a PACE program. I'mnot sure if you're familiar with
PACE program.
Steve (09:29):
I'm not.
Valerie (09:30):
It's a program for people who have Medi-Cal. Can go
to a center where everything isencompassed into one thing, and
they also cannot be in a nursinghome and/or on hospice, and they
must have a diagnosis of milddementia or more. Cannot have
mild cognitive impairment. Andfor our program, they cannot be
(09:51):
driving.
Virginia (09:52):
So if they go to a care facility to live, they're
out of the program?
Valerie (09:57):
No, they can live in an assisted living. They can live
at a boarding care or aresidential-
Virginia (10:02):
Oh, they can.
Valerie (10:03):
-they just can't be in a nursing home.
Virginia (10:05):
Oh.
Valerie (10:05):
A little bit more advanced care.
Virginia (10:07):
Okay.
Steve (10:07):
So if they were at a memory care facility, would that
be considered unqualified?
Valerie (10:13):
No.
Steve (10:13):
Okay.
Valerie (10:14):
They have to be able to come into the clinic for the
initial evaluation, and once ayear, they have to be able to
come in physically.
Virginia (10:20):
Okay.
Steve (10:21):
Okay. Where are the GUIDE programs located, and how many
of them are- remember theconversation we had? I was
shocked to find out how many ofthem there are in the State of
California.
Valerie (10:31):
Yes, there are a lot. I had to look that up too. I found
when I was looking up, there are38 active GUIDE programs in
California. Presently, there are19 locations in LA and Orange
County.
Steve (10:44):
Wow.
Sonia (10:44):
That's pretty good.
Steve (10:44):
And is this the same across the United States?
Valerie (10:46):
Yes, the GUIDE program is across the United States.
Steve (10:50):
So depending on the size of the state, they would have
similar numbers. So a state likeWisconsin would have maybe 20 or
18 or something like that?
Valerie (10:58):
There's kind of a rigorous application for the
GUIDE program.
Sonia (11:02):
Yeah, there is an application process. There are
some requirements. I don't knowhow many would be in a state
like Wisconsin, but if you go tothe CMS GUIDE website, I think
you'll see how many programs arein each state.
Virginia (11:14):
There's a spreadsheet with those places waiting to be
approved.
Sonia (11:18):
Yes, that's right. So when we were approved at UCI, we
were approved as a program thatwas already providing GUIDE
level services. But I believethere's a whole slew of programs
ready to come up and online thissummer.
Valerie (11:30):
July 1,
Sonia (11:31):
Right.
Valerie (11:32):
So they're learning from us of all the things that
we needed to figure out, and sothese programs are now gearing
up to go live on July 1.
Steve (11:40):
Well, let's cover that.
So when did this all start, andwhy did you decide to apply?
They looked at each other again.
Sonia (11:47):
I had to think about that one. So I think that we have
always provided care managementservices at the Senior Health
Center. But when CMS put thisprogram forward and put an
application forward, our chiefof geriatrics, Lisa Gibbs, was
very interested in applying. Andshe not only the Chief of
(12:08):
Geriatrics, but she also is oneof the Directors of Population
Health at UCI. And I think inher dual role, she saw the
benefit and the value topatients and caregivers. And so
she was a very strong advocatefor the program. We started the
process over a year ago, workingwith UCLA, actually. So UCLA has
a very well defined, longstanding Dementia Care
(12:31):
Management Program. We trainedwith them. I mean, Valerie
spent, I don't know how manyhours training?
Steve (12:39):
You took the drive to UCLA?
Valerie (12:41):
Oh no. It was all online.
Virginia (12:42):
Thank goodness.
Valerie (12:43):
And weekly or monthly discussions we had. And Dr.
Sehgal also participated in thetraining, so it was quite an
endeavor.
Steve (12:50):
And then you got approved. And when was that?
Sonia (12:52):
Last year.
Valerie (12:53):
Yeah, July 1. We were able to start.
Steve (12:56):
So you were the first official one here in Orange
County, right?
Sonia (12:59):
I don't know about that.
Valerie (13:00):
I don't know about that part.
I don't know about that.
Steve (13:03):
Oh, well, you can look it up. Just kidding, just kidding.
So where can I read more aboutthis program? Where's the place
to go learn about it? If I'm acaregiver and I'm listening into
this, I'm going like, "Holylavaina, this is pretty cool.
There's actually something morefor me in terms of my role." And
where do I go to read aboutthis? And how do I sign up for
it? Let's talk about some of theaction steps.
Sonia (13:24):
So certainly they could refer to the CMS website. They
are welcome to call UCI up tothe Senior Health Center and
reach out to us. We have someonethat can provide direct
information to them about GUIDEin general, but certainly our
program and how it what it lookslike and what it takes to
enroll.
Virginia (13:42):
If you Google capital, all caps, G, U, I, D, E, it
comes up.
Sonia (13:48):
Yeah, and they could certainly call our number
714-456-7007, and that will getyou to geriatrics. And you can
ask for our GUIDE program.
Steve (13:58):
So how excited are you that you have this in addition
to what you're doing, or is thislike another layer of government
involvement?
Valerie (14:07):
I think we're pretty excited about the program. I
think that it has a lot ofbenefits. I feel that for me,
seeing the patients and gettingto know the caregivers is really
again, deepening the layer thatI have with my patients and the
caregivers. Ialso currently,once we get more patients I may
not be able to do this, butright now, I go out and do a
(14:29):
home visit for safety. So that'spart of it, and I think that by
me going into their home, justlooking for safety is not
anything you know, doing a homevisit per se, but it allows me
also to have a better idea abouthow they're living, what their
environment is like. And, youknow, welcoming someone into
your home who's like a physicianassistant or physician is a
(14:50):
whole different thing than justseeing them in the clinic, and
you get a better idea about howthey live, what is going on,
what does the house look like?
So I think that that brings mecloser to them.
Steve (15:01):
Are people afraid of that visit, or they look forward to
that visit?
Valerie (15:05):
You know, it's interesting. I have a patient
that has more of an early onsetdementia. The husband is an
awesome husband. He loves hiswife so much. They had a
beautiful house. He has a paidcaregiver, and he told me when I
got there, he said "I was soworried you were going to come
in and take my wife away." AndI'm like, "Wow." Like, I'm like,
(15:27):
"Oh my gosh." I said, "No, thisis just to make sure that
there's not any cords that shecan trip on, or there's no-"
Virginia (15:32):
Throw rugs.
Valerie (15:33):
Yea, there's no throw rugs, there's alarms and things
like that. And it was reallyjust so interesting that he even
had that fear. But I'm likeexplain that it was more for
safety. And his house was great.
It was so wonderful, and youcould just seehow well he has
taken care of his wife andallows the open access. They
really have thought about whatto do with her. She paces a lot.
She's young, and she paces andshe has open area. He's really
(15:56):
done so much for her, but thatwas a fear that he had. Most
people are okay. One time, Ialmost had to cancel, and I
think that they're ready for me,right? So they are cleaning
their house, they are getting itready. And I thought, "I don't
want to cancel them, becausethen they have to do it again,
you know?" See, they're gettingready and prepped. But I think
it has been helpful, and I justpoint out some things like grab
(16:17):
bars or things like that. Soyeah.
Sonia (16:20):
I will say the unique aspects of the program that we
didn't touch on. Valerie does a90 minute assessment. That first
visit is an hour and a half,which you don't see anywhere.
And then it's followed by a homevisit, and then these monthly
touch points. It's a greatprogram.
Steve (16:35):
It seems like this is your basic program is awesome,
and this is awesome plus. It'slike because it adds all of this
caregiver assistance, but it'sgotta take more time. Gotta take
more people. How's the-
Virginia (16:49):
More paperwork.
Steve (16:50):
More paperwork too. You mentioned a little of the data
you have to collect. So whathappens if you doubled or
tripled or quadrupled the numberof people who would come into
the GUIDE program?
Sonia (17:01):
We're hoping for that.
We're ready.
Valerie (17:03):
Bring it on. Yeah, we're ready.
Sonia (17:04):
We're ready.
Valerie (17:05):
Yeah, no, we have a goal. We have to hire more
staff. Obviously, there has tobe more training and more staff
if it gets larger.
Steve (17:12):
Okay, so if you had to say, summarize into one word or
a few words, what the advantagesof GUIDE are for a caregiver,
what would it be?
Valerie (17:22):
I would have to say that there's more personal
touch. There's more personal, asDr. Sehgal said, I have to
contact either by phone, MyChartmessage, so just one of the
systems that we use through ourEpic, or have a visit with the
patient at least once a month.
So in a neurology appointment,you may see that doctor once a
year, or you may see that doctoronce every six months. If
(17:45):
there's a medication change orsomething, try to bring them in
more often, but there'sdefinitely a once a month touch
point. If they need help forother resources, it's like, I'm
there so they can haveopportunity to reach out and be
in contact with us. For our ownclinic, we usually see our
patients every three to fourmonths, that's kind of a routine
visit, unless they're superhealthy. Dr. Sehgal has a great
(18:07):
panel that are healthy aging.
She may not see them as often,so that becomes more routine.
Here it is more of a proactivethat I'm reaching out to them.
So that is a difference. And ifsomething's going on, for
instance, we had a patient thatwas in the hospital, there'sa
flag on our system that I amnotified that they have had an
ER visit. I'm notified thatthey're in the hospital, and
(18:30):
then I can reach out to thefamily and say, "Hey, how's it
going? Do you need some help?"So there's notifications that
are going on that we don'tnormally get for our regular
patients.
Steve (18:38):
What would you say makes this program unique?
Sonia (18:42):
I think if I had to distill it down to a couple of
words, I would say whole personcare and caregiver empowerment.
It really does allow the medicalteam to spend the time with the
caregiver, advocating for thecaregiver, and making sure the
caregiver is successful in theirrole. I imagine that as a
caregiver, it can feel verylonely. It can feel like you're
(19:04):
waiting in a sea of informationand sort of emotion that you
don't have someone on themedical team that's an advocate
for you. And I hope that theprogram allows to mitigate that
in some way. I think the programreally does emphasize healthy
aging, and it's very proactive.
Steve (19:19):
That's what I was gonna say. My two words were proactive
help. If I'm a caregiver, Ithink I always have to ask for
it instead of having it come atme. And I'm always looking for
help. I'm always looking forsomebody to take some of the
burden off, to explain things,to help me when I'm down, as you
know, it's a journey that takesits toll on both the patientand
(19:40):
the care.
Valerie (19:41):
You know, I can tell if the caregivers are starting to
have difficulty, I will say, "Ithink you need to talk to a
therapist if youneed somebodythat can help define that," or
you can just see it that they'rejust so burned out, or they're
depressed or they're lost, sowe're there to help them to find
those resources that they needit.
Steve (19:58):
Do you think that if this was successful, it would replace
the other kind of care you'reproviding, especially just for
dementia patients?
Sonia (20:07):
I don't. I think it's an adjunct. So we have neurologists
that refer into the program. Wehave geriatricians and PCPs that
are referring into GUIDE.
Steve (20:16):
PCPs?
Sonia (20:17):
Primary care clinicians.
So primary care docs arereferring as well. It is
absolutely not meant to replacethose services, but really just
an additional layer of support.
Steve (20:26):
Wow. I mean, we both heard this term, we had no idea
about it, and frankly, when Iread the website, I didn't
really understand it as well asyou've explained it, but you've
done a great job of explainingit, and it sounds like an
amazing service. Thank you forone, taking it on and deciding
this is something valuable toadd to what you're doing, and
(20:47):
two, to make it somethingspecial. Because if it works
here and you're helping otherpeople make it work, it could be
something that we all need,especially with the number of
people that will come down withthis disease.
Virginia (20:59):
Yeah. Thank you so much for being here, both of
you.
Sonia (21:01):
Thank you.
Valerie (21:03):
Yeah, it's been great.
Steve (21:04):
And, everybody don't forget to subscribe. We're
looking forward to having you asa regular content listener.
Spotlight on Care is produced bythe University of California
Irvine, Institute on MemoryImpairments and Neurological
Disorders, UCI MIND. Interviewsfocus on personal caregiving
journeys and may not representthe views of UCI MIND.
(21:26):
Individuals concerned aboutcognitive disorders, prevention
or treatment should seek expertdiagnosis and care. Please
subscribe to the Spotlight onCare podcast wherever you
listen. For more information,visit mind.uci.edu.
From the University of California, Irvine. This is UCI
MINDS's Spotlight on Care, thepodcast where we share stories,
experiences, tips, and advice oncaring for loved ones affected
by Alzheimer's and otherdementias.
Hello everybody! We're excitedtoday, as we usually are, about
(00:26):
these sessions. This is kind offascinating because we're going
to do a follow up session herewith the two ladies that we had
from our previous Spotlight onCare episode where we talked
about the value and theimportance of geriatricians. Now
we're going to talk a little bitabout a new program that's been
introduced by CMS, which I neverunderstand what it stands for,
(00:46):
but we'll get to that for asecond. So I want to let
everybody know that we haveValerie George back with us and
Sonia Sehgal. Let's start withwhat a quick overview of what
the GUIDE program is and why CMShas decided to start it.
Valerie (01:02):
Okay, so CMS is the Centers for Medicare and
Medicaid service, and it'sthrough the national government
they have come up with a projector a plan to work with patients
who have dementia and theircaregivers. It is called GUIDE.
And GUIDE stands for (01:17):
Guiding and Improved Dementia
Experience. This is a programthat was introduced back in
2023. So CMS has decided to workon this project because we know,
as people get older and theyhave dementia, they also
havecaregivers that take care ofthem, and we know that there's a
(01:38):
high level stress that goesalong with caregivers who are
taking care of their loved ones.
So the GUIDE program is acomprehensive evaluation that is
seen for both the patients withdementia and their caregivers.
They come in as a dyad.
Steve (01:52):
But what's a dyad?
Valerie (01:53):
Dyad is two people, so a dyad is a patient with a
dementia and their caregiver. Soit's a pretty involved exam, and
then we follow them. Theprogram, I believe, is for eight
years. So it just started inJuly of last year, and we're
coming into the full year ofthis year.
Sonia (02:10):
Yeah, it's unique, because it's the first time that
we have a formal program thatallows us to provide care, not
only to the patient, but theircaregiver, for all the reasons
that Val is saying, I mean, it'sa high stress 24/7 job, and the
program allows for participantsin the GUIDE program to really
provide very specific,well-rounded care to
(02:30):
thecaregiver.
Steve (02:30):
So it's really about a program for both and really
geared towards helping thecaregiver be a better caregiver,
because that can really help theprocess of the care that the
patient gets. Is that theconcept?
Sonia (02:44):
Absolutely. And it's not meant to replace care provided
by a neurologist or a primarycare clinician or a
geriatrician. It's really anadded benefit.
Steve (02:55):
Okay, well, let's go through some of the details of
what GUIDE is providing to acaregiver. You said eight years,
that sounds like a long time. IfI'm a caregiver, and you're
talking to me and you're saying,"Hey, this is the end benefit of
what you're going to get, or thesteps that you're going to
take."
Valerie (03:09):
So a patient is referred to us, they have to
have a diagnosis of dementia,and they have to have a non-paid
caregiver. So it could be ahusband, it could be a wife, a
family member who helpsparticipate in care. It could be
their activities of daily livingor their instrumental activities
of daily living. They can alsohave paid caregivers, but they
may also have to orchestratethat.
Steve (03:31):
Somebody who's in charge.
Valerie (03:32):
Yes, and part of the program is we do surveys with
the caregivers to understandtheir burden that they're
feeling. We also participate ina neuropsych inventory to talk
about hallucinations ordelusions or things that they
may be having behavioral. Wealso score them of their
different abilities to doactivities of daily living or
(03:53):
their instrumental activities.
Once we do all these things,then we also interview the
caregiver. So I've had patientsthat they're going along, and
the caregiver is in thebackground, silent, right? And
you're talking, and then I'mdoing the look, as Dr. Sehgal
said, we look at the patient,but then just adjacent, I'm
glancing at the caregiver,they're nodding their head, no,
(04:14):
yes, or I'll say, "Oh, what doyou think?" "Oh, I'm just, I'm
not gonna-" because they don'twant to upset their loved ones.
And I know right there, thatthat caregiver is stress beyond
belief. And so it may be that Ihave to call them separately.
Sometimes I've had an hourinterview with a caregiver after
the visit, because it's just somuch is going on and they can't
say it in front of their lovedone. It's a very in-depth
(04:36):
program. There's a lot of followup. A lot of it is more with the
caregiver than the patient,trying to make sure that they
have resources. If there'sanything that's going on and
they're hospitalized or ER,we're notified. There's a 24/7
hotline that they need aquestion about their dementia
care, or there's something goingonthat we're available to help
them go through that process.
Virginia (04:59):
I have a question.
When you said eight years, isthis a test program that they're
gonna test to see if it's worthimplementing forever? Are they
testing for eight years? Or whatis that eight year thing?
Sonia (05:11):
It's a pilot program right now.
Virginia (05:13):
Pilot.
Sonia (05:13):
It's a pilot program.
Virginia (05:15):
Got it.
Valerie (05:15):
It's only funded, let's say maybe for eight years.
Virginia (05:18):
Okay.
Sonia (05:18):
So it is a pilot program, and hopefully we will show some
benefit nationally throughparticipation. But I think to
answer your question just sortof from a high level view, it's
intensive case management of theindividual who is living with a
dementing illness and theircaregiver. And so this
comprehensive case managementlooks at what stage is the
(05:40):
dementia? How significant arethe symptoms of the cognitive
impairment? Is there a highburden because there are
unmanaged symptoms, and whatkind of social support is the
patient and caregiver receiving?
And is there a deficit ineducation? So can we provide
education to the caregiver? Dothey need some training on
communication skills, self care?
(06:01):
Do they need a support group? Sowe work to connect them with
these types of resources. Andthen Valerie and her team are
available to assist primary careclinicians and geriatricians and
neurologists on behaviormanagement, medical management.
There are unique things thathappen when patients are
hospitalized. Her team'savailable to help manage that.
(06:22):
And then should a caregiver justreally be at the point where
they need respite services? Wework to connect them with
respite services as well.
Steve (06:30):
Well it sounds like there's a care team involved in
this as well. Is it the samecare team that you were involved
in? Or is this different?
Valerie (06:38):
There's a dementia care specialist, and that's my title.
I have a dementia care associatethat works with me, assistant.
We have a social worker who isavailable to us. In our team in
general, we also have, there's alot of data that is collected,
so we have a team that we haveto report to different points of
interest that CMS is requiring.
If there is a problem, ourprogram actually is under
(07:00):
population health within our UCIprogram, so we also have their
capability if we need help withresources and things. So there's
kind of a group.
Sonia (07:11):
Yeah, so I think, to your point, though, I mean, at the
Senior Health Center, the GUIDEteam does have access to all of
the team at Senior HealthCenter, including
neuropsychology, social work,our nursing staff, etc. But
Valerie's a dementia carespecialist. She has a dementia
care assistant. We have someonein patient education. We have a
social worker who is doingsupport groups. So we partner
(07:32):
with our social work team atUCI, our population health team.
They have health coaches, andthen we have our own staff at
the Senior Health Center.
Steve (07:40):
So let's see if we can draw a line here, because you
guys did a wonderful job ofexplaining the depth and quality
of the geriatricians role andwhy they're such an incredible
resource for people, to somedegree where it felt like you
got a little involved with thecaregiver. This sounds like it's
dramatically more about helpingthe caregiver as well as the
(08:02):
patient, is that the keydelineation between what you
would normally provide versusthe care?
Sonia (08:08):
I think that's part of it, but the other part is the
program allows for the dementiacare team to proactively reach
out to participants. Sogenerally, in medicine, the
patient or caregiver, they call,they schedule an appointment
because something's going on. Aspart of this program, Valerie
and her dementia care assistantevery month are making outreach
(08:32):
touch points, whether that be avisit or a phone call to say,
"Hey, like, is everything goingwell? Because if it is
wonderful, we'll touch base withyou again next month." But if
not, what's not, so that we canproactively get you in touch
with resources, get you in touchwith your own PCP, find ways to
support you with the hope ofpreventing caregiver burnout and
(08:52):
really staying one step ahead ofthe process of the condition.
Steve (08:56):
I'm going to ask you a question about, what's the hope
of this program in a second. Butlet's talk about, are there any
limits to this service? Is thereany insurance issues that you
need to be aware of?
Valerie (09:07):
Yes, you have to have Medicare A and B as your
primary. YTou cannot have aMedicare Advantage Program. So
Medicare A and B. You can have asecondary, like Blue Cross, Blue
Shield. There is no HMO allowed.
You can have like Medicare andMedi-Cal, that's allowable.
Can't be in a PACE program. I'mnot sure if you're familiar with
PACE program.
Steve (09:29):
I'm not.
Valerie (09:30):
It's a program for people who have Medi-Cal. Can go
to a center where everything isencompassed into one thing, and
they also cannot be in a nursinghome and/or on hospice, and they
must have a diagnosis of milddementia or more. Cannot have
mild cognitive impairment. Andfor our program, they cannot be
(09:51):
driving.
Virginia (09:52):
So if they go to a care facility to live, they're
out of the program?
Valerie (09:57):
No, they can live in an assisted living. They can live
at a boarding care or aresidential-
Virginia (10:02):
Oh, they can.
Valerie (10:03):
-they just can't be in a nursing home.
Virginia (10:05):
Oh.
Valerie (10:05):
A little bit more advanced care.
Virginia (10:07):
Okay.
Steve (10:07):
So if they were at a memory care facility, would that
be considered unqualified?
Valerie (10:13):
No.
Steve (10:13):
Okay.
Valerie (10:14):
They have to be able to come into the clinic for the
initial evaluation, and once ayear, they have to be able to
come in physically.
Virginia (10:20):
Okay.
Steve (10:21):
Okay. Where are the GUIDE programs located, and how many
of them are- remember theconversation we had? I was
shocked to find out how many ofthem there are in the State of
California.
Valerie (10:31):
Yes, there are a lot. I had to look that up too. I found
when I was looking up, there are38 active GUIDE programs in
California. Presently, there are19 locations in LA and Orange
County.
Steve (10:44):
Wow.
Sonia (10:44):
That's pretty good.
Steve (10:44):
And is this the same across the United States?
Valerie (10:46):
Yes, the GUIDE program is across the United States.
Steve (10:50):
So depending on the size of the state, they would have
similar numbers. So a state likeWisconsin would have maybe 20 or
18 or something like that?
Valerie (10:58):
There's kind of a rigorous application for the
GUIDE program.
Sonia (11:02):
Yeah, there is an application process. There are
some requirements. I don't knowhow many would be in a state
like Wisconsin, but if you go tothe CMS GUIDE website, I think
you'll see how many programs arein each state.
Virginia (11:14):
There's a spreadsheet with those places waiting to be
approved.
Sonia (11:18):
Yes, that's right. So when we were approved at UCI, we
were approved as a program thatwas already providing GUIDE
level services. But I believethere's a whole slew of programs
ready to come up and online thissummer.
Valerie (11:30):
July 1,
Sonia (11:31):
Right.
Valerie (11:32):
So they're learning from us of all the things that
we needed to figure out, and sothese programs are now gearing
up to go live on July 1.
Steve (11:40):
Well, let's cover that.
So when did this all start, andwhy did you decide to apply?
They looked at each other again.
Sonia (11:47):
I had to think about that one. So I think that we have
always provided care managementservices at the Senior Health
Center. But when CMS put thisprogram forward and put an
application forward, our chiefof geriatrics, Lisa Gibbs, was
very interested in applying. Andshe not only the Chief of
(12:08):
Geriatrics, but she also is oneof the Directors of Population
Health at UCI. And I think inher dual role, she saw the
benefit and the value topatients and caregivers. And so
she was a very strong advocatefor the program. We started the
process over a year ago, workingwith UCLA, actually. So UCLA has
a very well defined, longstanding Dementia Care
(12:31):
Management Program. We trainedwith them. I mean, Valerie
spent, I don't know how manyhours training?
Steve (12:39):
You took the drive to UCLA?
Valerie (12:41):
Oh no. It was all online.
Virginia (12:42):
Thank goodness.
Valerie (12:43):
And weekly or monthly discussions we had. And Dr.
Sehgal also participated in thetraining, so it was quite an
endeavor.
Steve (12:50):
And then you got approved. And when was that?
Sonia (12:52):
Last year.
Valerie (12:53):
Yeah, July 1. We were able to start.
Steve (12:56):
So you were the first official one here in Orange
County, right?
Sonia (12:59):
I don't know about that.
Valerie (13:00):
I don't know about that part.
I don't know about that.
Steve (13:03):
Oh, well, you can look it up. Just kidding, just kidding.
So where can I read more aboutthis program? Where's the place
to go learn about it? If I'm acaregiver and I'm listening into
this, I'm going like, "Holylavaina, this is pretty cool.
There's actually something morefor me in terms of my role." And
where do I go to read aboutthis? And how do I sign up for
it? Let's talk about some of theaction steps.
Sonia (13:24):
So certainly they could refer to the CMS website. They
are welcome to call UCI up tothe Senior Health Center and
reach out to us. We have someonethat can provide direct
information to them about GUIDEin general, but certainly our
program and how it what it lookslike and what it takes to
enroll.
Virginia (13:42):
If you Google capital, all caps, G, U, I, D, E, it
comes up.
Sonia (13:48):
Yeah, and they could certainly call our number
714-456-7007, and that will getyou to geriatrics. And you can
ask for our GUIDE program.
Steve (13:58):
So how excited are you that you have this in addition
to what you're doing, or is thislike another layer of government
involvement?
Valerie (14:07):
I think we're pretty excited about the program. I
think that it has a lot ofbenefits. I feel that for me,
seeing the patients and gettingto know the caregivers is really
again, deepening the layer thatI have with my patients and the
caregivers. Ialso currently,once we get more patients I may
not be able to do this, butright now, I go out and do a
(14:29):
home visit for safety. So that'spart of it, and I think that by
me going into their home, justlooking for safety is not
anything you know, doing a homevisit per se, but it allows me
also to have a better idea abouthow they're living, what their
environment is like. And, youknow, welcoming someone into
your home who's like a physicianassistant or physician is a
(14:50):
whole different thing than justseeing them in the clinic, and
you get a better idea about howthey live, what is going on,
what does the house look like?
So I think that that brings mecloser to them.
Steve (15:01):
Are people afraid of that visit, or they look forward to
that visit?
Valerie (15:05):
You know, it's interesting. I have a patient
that has more of an early onsetdementia. The husband is an
awesome husband. He loves hiswife so much. They had a
beautiful house. He has a paidcaregiver, and he told me when I
got there, he said "I was soworried you were going to come
in and take my wife away." AndI'm like, "Wow." Like, I'm like,
(15:27):
"Oh my gosh." I said, "No, thisis just to make sure that
there's not any cords that shecan trip on, or there's no-"
Virginia (15:32):
Throw rugs.
Valerie (15:33):
Yea, there's no throw rugs, there's alarms and things
like that. And it was reallyjust so interesting that he even
had that fear. But I'm likeexplain that it was more for
safety. And his house was great.
It was so wonderful, and youcould just seehow well he has
taken care of his wife andallows the open access. They
really have thought about whatto do with her. She paces a lot.
She's young, and she paces andshe has open area. He's really
(15:56):
done so much for her, but thatwas a fear that he had. Most
people are okay. One time, Ialmost had to cancel, and I
think that they're ready for me,right? So they are cleaning
their house, they are getting itready. And I thought, "I don't
want to cancel them, becausethen they have to do it again,
you know?" See, they're gettingready and prepped. But I think
it has been helpful, and I justpoint out some things like grab
(16:17):
bars or things like that. Soyeah.
Sonia (16:20):
I will say the unique aspects of the program that we
didn't touch on. Valerie does a90 minute assessment. That first
visit is an hour and a half,which you don't see anywhere.
And then it's followed by a homevisit, and then these monthly
touch points. It's a greatprogram.
Steve (16:35):
It seems like this is your basic program is awesome,
and this is awesome plus. It'slike because it adds all of this
caregiver assistance, but it'sgotta take more time. Gotta take
more people. How's the-
Virginia (16:49):
More paperwork.
Steve (16:50):
More paperwork too. You mentioned a little of the data
you have to collect. So whathappens if you doubled or
tripled or quadrupled the numberof people who would come into
the GUIDE program?
Sonia (17:01):
We're hoping for that.
We're ready.
Valerie (17:03):
Bring it on. Yeah, we're ready.
Sonia (17:04):
We're ready.
Valerie (17:05):
Yeah, no, we have a goal. We have to hire more
staff. Obviously, there has tobe more training and more staff
if it gets larger.
Steve (17:12):
Okay, so if you had to say, summarize into one word or
a few words, what the advantagesof GUIDE are for a caregiver,
what would it be?
Valerie (17:22):
I would have to say that there's more personal
touch. There's more personal, asDr. Sehgal said, I have to
contact either by phone, MyChartmessage, so just one of the
systems that we use through ourEpic, or have a visit with the
patient at least once a month.
So in a neurology appointment,you may see that doctor once a
year, or you may see that doctoronce every six months. If
(17:45):
there's a medication change orsomething, try to bring them in
more often, but there'sdefinitely a once a month touch
point. If they need help forother resources, it's like, I'm
there so they can haveopportunity to reach out and be
in contact with us. For our ownclinic, we usually see our
patients every three to fourmonths, that's kind of a routine
visit, unless they're superhealthy. Dr. Sehgal has a great
(18:07):
panel that are healthy aging.
She may not see them as often,so that becomes more routine.
Here it is more of a proactivethat I'm reaching out to them.
So that is a difference. And ifsomething's going on, for
instance, we had a patient thatwas in the hospital, there'sa
flag on our system that I amnotified that they have had an
ER visit. I'm notified thatthey're in the hospital, and
(18:30):
then I can reach out to thefamily and say, "Hey, how's it
going? Do you need some help?"So there's notifications that
are going on that we don'tnormally get for our regular
patients.
Steve (18:38):
What would you say makes this program unique?
Sonia (18:42):
I think if I had to distill it down to a couple of
words, I would say whole personcare and caregiver empowerment.
It really does allow the medicalteam to spend the time with the
caregiver, advocating for thecaregiver, and making sure the
caregiver is successful in theirrole. I imagine that as a
caregiver, it can feel verylonely. It can feel like you're
(19:04):
waiting in a sea of informationand sort of emotion that you
don't have someone on themedical team that's an advocate
for you. And I hope that theprogram allows to mitigate that
in some way. I think the programreally does emphasize healthy
aging, and it's very proactive.
Steve (19:19):
That's what I was gonna say. My two words were proactive
help. If I'm a caregiver, Ithink I always have to ask for
it instead of having it come atme. And I'm always looking for
help. I'm always looking forsomebody to take some of the
burden off, to explain things,to help me when I'm down, as you
know, it's a journey that takesits toll on both the patientand
(19:40):
the care.
Valerie (19:41):
You know, I can tell if the caregivers are starting to
have difficulty, I will say, "Ithink you need to talk to a
therapist if youneed somebodythat can help define that," or
you can just see it that they'rejust so burned out, or they're
depressed or they're lost, sowe're there to help them to find
those resources that they needit.
Steve (19:58):
Do you think that if this was successful, it would replace
the other kind of care you'reproviding, especially just for
dementia patients?
Sonia (20:07):
I don't. I think it's an adjunct. So we have neurologists
that refer into the program. Wehave geriatricians and PCPs that
are referring into GUIDE.
Steve (20:16):
PCPs?
Sonia (20:17):
Primary care clinicians.
So primary care docs arereferring as well. It is
absolutely not meant to replacethose services, but really just
an additional layer of support.
Steve (20:26):
Wow. I mean, we both heard this term, we had no idea
about it, and frankly, when Iread the website, I didn't
really understand it as well asyou've explained it, but you've
done a great job of explainingit, and it sounds like an
amazing service. Thank you forone, taking it on and deciding
this is something valuable toadd to what you're doing, and
(20:47):
two, to make it somethingspecial. Because if it works
here and you're helping otherpeople make it work, it could be
something that we all need,especially with the number of
people that will come down withthis disease.
Virginia (20:59):
Yeah. Thank you so much for being here, both of
you.
Sonia (21:01):
Thank you.
Valerie (21:03):
Yeah, it's been great.
Steve (21:04):
And, everybody don't forget to subscribe. We're
looking forward to having you asa regular content listener.
Spotlight on Care is produced bythe University of California
Irvine, Institute on MemoryImpairments and Neurological
Disorders, UCI MIND. Interviewsfocus on personal caregiving
journeys and may not representthe views of UCI MIND.
(21:26):
Individuals concerned aboutcognitive disorders, prevention
or treatment should seek expertdiagnosis and care. Please
subscribe to the Spotlight onCare podcast wherever you
listen. For more information,visit mind.uci.edu.
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