Spotlight on Care: Alzheimer's Caregiving
Welcome to Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer’s and other dementias. Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu. What would like to hear about next? Email us at mwitbrac@uci.edu.
Spotlight on Care: Alzheimer's Caregiving
THE CMS Guide Model with Valerie George, PA and Sonia Sehgal, MD
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
From the University of California, Irvine. This is UCI MINDS's Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias. Hello everybody! We're excited today, as we usually are, about these sessions. This is kind of fascinating because we're going to do a follow up session here with the two ladies that we had from our previous Spotlight on Care episode where we talked about the value and the importance of geriatricians. Now we're going to talk a little bit about a new program that's been introduced by CMS, which I never understand what it stands for, but we'll get to that for a second. So I want to let everybody know that we have Valerie George back with us and Sonia Sehgal. Let's start with what a quick overview of what the GUIDE program is and why CMS has decided to start it.
Valerie:Okay, so CMS is the Centers for Medicare and Medicaid service, and it's through the national government they have come up with a project or a plan to work with patients who have dementia and their caregivers. It is called GUIDE.
And GUIDE stands for:Guiding and Improved Dementia Experience. This is a program that was introduced back in 2023. So CMS has decided to work on this project because we know, as people get older and they have dementia, they also havecaregivers that take care of them, and we know that there's a high level stress that goes along with caregivers who are taking care of their loved ones. So the GUIDE program is a comprehensive evaluation that is seen for both the patients with dementia and their caregivers. They come in as a dyad.
Steve:But what's a dyad?
Valerie:Dyad is two people, so a dyad is a patient with a dementia and their caregiver. So it's a pretty involved exam, and then we follow them. The program, I believe, is for eight years. So it just started in July of last year, and we're coming into the full year of this year.
Sonia:Yeah, it's unique, because it's the first time that we have a formal program that allows us to provide care, not only to the patient, but their caregiver, for all the reasons that Val is saying, I mean, it's a high stress 24/7 job, and the program allows for participants in the GUIDE program to really provide very specific, well-rounded care to thecaregiver.
Steve:So it's really about a program for both and really geared towards helping the caregiver be a better caregiver, because that can really help the process of the care that the patient gets. Is that the concept?
Sonia:Absolutely. And it's not meant to replace care provided by a neurologist or a primary care clinician or a geriatrician. It's really an added benefit.
Steve:Okay, well, let's go through some of the details of what GUIDE is providing to a caregiver. You said eight years, that sounds like a long time. If I'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 the steps that you're going to take."
Valerie: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 a husband, it could be a wife, a family member who helps participate in care. It could be their activities of daily living or their instrumental activities of daily living. They can also have paid caregivers, but they may also have to orchestrate that.
Steve:Somebody who's in charge.
Valerie:Yes, and part of the program is we do surveys with the caregivers to understand their burden that they're feeling. We also participate in a neuropsych inventory to talk about hallucinations or delusions or things that they may be having behavioral. We also score them of their different abilities to do activities of daily living or their instrumental activities. Once we do all these things, then we also interview the caregiver. So I've had patients that they're going along, and the caregiver is in the background, silent, right? And you're talking, and then I'm doing 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, yes, or I'll say, "Oh, what do you think?" "Oh, I'm just, I'm not gonna-" because they don't want to upset their loved ones. And I know right there, that that caregiver is stress beyond belief. And so it may be that I have to call them separately. Sometimes I've had an hour interview with a caregiver after the visit, because it's just so much is going on and they can't say it in front of their loved one. It's a very in-depth program. There's a lot of follow up. A lot of it is more with the caregiver than the patient, trying to make sure that they have resources. If there's anything that's going on and they're hospitalized or ER, we're notified. There's a 24/7 hotline that they need a question about their dementia care, or there's something going onthat we're available to help them go through that process.
Virginia:I have a question. When you said eight years, is this a test program that they're gonna test to see if it's worth implementing forever? Are they testing for eight years? Or what is that eight year thing?
Sonia:It's a pilot program right now.
Virginia:Pilot.
Sonia:It's a pilot program.
Virginia:Got it.
Valerie:It's only funded, let's say maybe for eight years.
Virginia:Okay.
Sonia:So it is a pilot program, and hopefully we will show some benefit nationally through participation. But I think to answer your question just sort of from a high level view, it's intensive case management of the individual who is living with a dementing illness and their caregiver. And so this comprehensive case management looks at what stage is the dementia? How significant are the symptoms of the cognitive impairment? Is there a high burden because there are unmanaged symptoms, and what kind of social support is the patient and caregiver receiving? And is there a deficit in education? So can we provide education to the caregiver? Do they need some training on communication skills, self care? Do they need a support group? So we work to connect them with these types of resources. And then Valerie and her team are available to assist primary care clinicians and geriatricians and neurologists on behavior management, medical management. There are unique things that happen when patients are hospitalized. Her team's available to help manage that. And then should a caregiver just really be at the point where they need respite services? We work to connect them with respite services as well.
Steve:Well it sounds like there's a care team involved in this as well. Is it the same care team that you were involved in? Or is this different?
Valerie:There's a dementia care specialist, and that's my title. I have a dementia care associate that works with me, assistant. We have a social worker who is available to us. In our team in general, we also have, there's a lot of data that is collected, so we have a team that we have to report to different points of interest that CMS is requiring. If there is a problem, our program actually is under population health within our UCI program, so we also have their capability if we need help with resources and things. So there's kind of a group.
Sonia:Yeah, so I think, to your point, though, I mean, at the Senior Health Center, the GUIDE team does have access to all of the team at Senior Health Center, including neuropsychology, social work, our nursing staff, etc. But Valerie's a dementia care specialist. She has a dementia care assistant. We have someone in patient education. We have a social worker who is doing support groups. So we partner with our social work team at UCI, our population health team. They have health coaches, and then we have our own staff at the Senior Health Center.
Steve:So let's see if we can draw a line here, because you guys did a wonderful job of explaining the depth and quality of the geriatricians role and why they're such an incredible resource for people, to some degree where it felt like you got a little involved with the caregiver. This sounds like it's dramatically more about helping the caregiver as well as the patient, is that the key delineation between what you would normally provide versus the care?
Sonia:I think that's part of it, but the other part is the program allows for the dementia care team to proactively reach out to participants. So generally, in medicine, the patient or caregiver, they call, they schedule an appointment because something's going on. As part of this program, Valerie and her dementia care assistant every month are making outreach touch points, whether that be a visit or a phone call to say,"Hey, like, is everything going well? Because if it is wonderful, we'll touch base with you again next month." But if not, what's not, so that we can proactively get you in touch with resources, get you in touch with your own PCP, find ways to support you with the hope of preventing caregiver burnout and really staying one step ahead of the process of the condition.
Steve:I'm going to ask you a question about, what's the hope of this program in a second. But let's talk about, are there any limits to this service? Is there any insurance issues that you need to be aware of?
Valerie:Yes, you have to have Medicare A and B as your primary. YTou cannot have a Medicare Advantage Program. So Medicare A and B. You can have a secondary, like Blue Cross, Blue Shield. There is no HMO allowed. You can have like Medicare and Medi-Cal, that's allowable. Can't be in a PACE program. I'm not sure if you're familiar with PACE program.
Steve:I'm not.
Valerie:It's a program for people who have Medi-Cal. Can go to a center where everything is encompassed into one thing, and they also cannot be in a nursing home and/or on hospice, and they must have a diagnosis of mild dementia or more. Cannot have mild cognitive impairment. And for our program, they cannot be driving.
Virginia:So if they go to a care facility to live, they're out of the program?
Valerie:No, they can live in an assisted living. They can live at a boarding care or a residential-
Virginia:Oh, they can.
Valerie:-they just can't be in a nursing home.
Virginia:Oh.
Valerie:A little bit more advanced care.
Virginia:Okay.
Steve:So if they were at a memory care facility, would that be considered unqualified?
Valerie:No.
Steve:Okay.
Valerie:They have to be able to come into the clinic for the initial evaluation, and once a year, they have to be able to come in physically.
Virginia:Okay.
Steve:Okay. Where are the GUIDE programs located, and how many of them are- remember the conversation we had? I was shocked to find out how many of them there are in the State of California.
Valerie:Yes, there are a lot. I had to look that up too. I found when I was looking up, there are 38 active GUIDE programs in California. Presently, there are 19 locations in LA and Orange County.
Steve:Wow.
Sonia:That's pretty good.
Steve:And is this the same across the United States?
Valerie:Yes, the GUIDE program is across the United States.
Steve:So depending on the size of the state, they would have similar numbers. So a state like Wisconsin would have maybe 20 or 18 or something like that?
Valerie:There's kind of a rigorous application for the GUIDE program.
Sonia:Yeah, there is an application process. There are some requirements. I don't know how many would be in a state like Wisconsin, but if you go to the CMS GUIDE website, I think you'll see how many programs are in each state.
Virginia:There's a spreadsheet with those places waiting to be approved.
Sonia:Yes, that's right. So when we were approved at UCI, we were approved as a program that was already providing GUIDE level services. But I believe there's a whole slew of programs ready to come up and online this summer.
Valerie:July 1,
Sonia:Right.
Valerie:So they're learning from us of all the things that we needed to figure out, and so these programs are now gearing up to go live on July 1.
Steve:Well, let's cover that. So when did this all start, and why did you decide to apply? They looked at each other again.
Sonia:I had to think about that one. So I think that we have always provided care management services at the Senior Health Center. But when CMS put this program forward and put an application forward, our chief of geriatrics, Lisa Gibbs, was very interested in applying. And she not only the Chief of Geriatrics, but she also is one of the Directors of Population Health at UCI. And I think in her dual role, she saw the benefit and the value to patients and caregivers. And so she was a very strong advocate for the program. We started the process over a year ago, working with UCLA, actually. So UCLA has a very well defined, long standing Dementia Care Management Program. We trained with them. I mean, Valerie spent, I don't know how many hours training?
Steve:You took the drive to UCLA?
Valerie:Oh no. It was all online.
Virginia:Thank goodness.
Valerie:And weekly or monthly discussions we had. And Dr. Sehgal also participated in the training, so it was quite an endeavor.
Steve:And then you got approved. And when was that?
Sonia:Last year.
Valerie:Yeah, July 1. We were able to start.
Steve:So you were the first official one here in Orange County, right?
Sonia:I don't know about that.
Valerie:I don't know about that part. I don't know about that.
Steve:Oh, well, you can look it up. Just kidding, just kidding. So where can I read more about this program? Where's the place to go learn about it? If I'm a caregiver and I'm listening into this, I'm going like, "Holy lavaina, this is pretty cool. There's actually something more for me in terms of my role." And where do I go to read about this? And how do I sign up for it? Let's talk about some of the action steps.
Sonia:So certainly they could refer to the CMS website. They are welcome to call UCI up to the Senior Health Center and reach out to us. We have someone that can provide direct information to them about GUIDE in general, but certainly our program and how it what it looks like and what it takes to enroll.
Virginia:If you Google capital, all caps, G, U, I, D, E, it comes up.
Sonia:Yeah, and they could certainly call our number 714-456-7007, and that will get you to geriatrics. And you can ask for our GUIDE program.
Steve:So how excited are you that you have this in addition to what you're doing, or is this like another layer of government involvement?
Valerie:I think we're pretty excited about the program. I think that it has a lot of benefits. I feel that for me, seeing the patients and getting to know the caregivers is really again, deepening the layer that I have with my patients and the caregivers. Ialso currently, once we get more patients I may not be able to do this, but right now, I go out and do a home visit for safety. So that's part of it, and I think that by me going into their home, just looking for safety is not anything you know, doing a home visit per se, but it allows me also to have a better idea about how they're living, what their environment is like. And, you know, welcoming someone into your home who's like a physician assistant or physician is a whole different thing than just seeing them in the clinic, and you get a better idea about how they live, what is going on, what does the house look like? So I think that that brings me closer to them.
Steve:Are people afraid of that visit, or they look forward to that visit?
Valerie:You know, it's interesting. I have a patient that has more of an early onset dementia. The husband is an awesome husband. He loves his wife so much. They had a beautiful house. He has a paid caregiver, and he told me when I got there, he said "I was so worried you were going to come in and take my wife away." And I'm like, "Wow." Like, I'm like,"Oh my gosh." I said, "No, this is just to make sure that there's not any cords that she can trip on, or there's no-"
Virginia:Throw rugs.
Valerie:Yea, there's no throw rugs, there's alarms and things like that. And it was really just so interesting that he even had that fear. But I'm like explain that it was more for safety. And his house was great. It was so wonderful, and you could just seehow well he has taken care of his wife and allows the open access. They really have thought about what to do with her. She paces a lot. She's young, and she paces and she has open area. He's really done so much for her, but that was a fear that he had. Most people are okay. One time, I almost had to cancel, and I think that they're ready for me, right? So they are cleaning their house, they are getting it ready. And I thought, "I don't want to cancel them, because then they have to do it again, you know?" See, they're getting ready and prepped. But I think it has been helpful, and I just point out some things like grab bars or things like that. So yeah.
Sonia:I will say the unique aspects of the program that we didn't touch on. Valerie does a 90 minute assessment. That first visit is an hour and a half, which you don't see anywhere. And then it's followed by a home visit, and then these monthly touch points. It's a great program.
Steve:It seems like this is your basic program is awesome, and this is awesome plus. It's like because it adds all of this caregiver assistance, but it's gotta take more time. Gotta take more people. How's the-
Virginia:More paperwork.
Steve:More paperwork too. You mentioned a little of the data you have to collect. So what happens if you doubled or tripled or quadrupled the number of people who would come into the GUIDE program?
Sonia:We're hoping for that. We're ready.
Valerie:Bring it on. Yeah, we're ready.
Sonia:We're ready.
Valerie:Yeah, no, we have a goal. We have to hire more staff. Obviously, there has to be more training and more staff if it gets larger.
Steve:Okay, so if you had to say, summarize into one word or a few words, what the advantages of GUIDE are for a caregiver, what would it be?
Valerie:I would have to say that there's more personal touch. There's more personal, as Dr. Sehgal said, I have to contact either by phone, MyChart message, so just one of the systems that we use through our Epic, 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 doctor once every six months. If there's a medication change or something, try to bring them in more often, but there's definitely a once a month touch point. If they need help for other resources, it's like, I'm there so they can have opportunity to reach out and be in contact with us. For our own clinic, we usually see our patients every three to four months, that's kind of a routine visit, unless they're super healthy. Dr. Sehgal has a great panel that are healthy aging. She may not see them as often, so that becomes more routine. Here it is more of a proactive that I'm reaching out to them. So that is a difference. And if something's going on, for instance, we had a patient that was in the hospital, there'sa flag on our system that I am notified that they have had an ER visit. I'm notified that they're in the hospital, and then I can reach out to the family and say, "Hey, how's it going? Do you need some help?" So there's notifications that are going on that we don't normally get for our regular patients.
Steve:What would you say makes this program unique?
Sonia:I think if I had to distill it down to a couple of words, I would say whole person care and caregiver empowerment. It really does allow the medical team to spend the time with the caregiver, advocating for the caregiver, and making sure the caregiver is successful in their role. I imagine that as a caregiver, it can feel very lonely. It can feel like you're waiting in a sea of information and sort of emotion that you don't have someone on the medical team that's an advocate for you. And I hope that the program allows to mitigate that in some way. I think the program really does emphasize healthy aging, and it's very proactive.
Steve:That's what I was gonna say. My two words were proactive help. If I'm a caregiver, I think I always have to ask for it instead of having it come at me. And I'm always looking for help. I'm always looking for somebody 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 takes its toll on both the patientand the care.
Valerie:You know, I can tell if the caregivers are starting to have difficulty, I will say, "I think you need to talk to a therapist if youneed somebody that can help define that," or you can just see it that they're just so burned out, or they're depressed or they're lost, so we're there to help them to find those resources that they need it.
Steve:Do you think that if this was successful, it would replace the other kind of care you're providing, especially just for dementia patients?
Sonia:I don't. I think it's an adjunct. So we have neurologists that refer into the program. We have geriatricians and PCPs that are referring into GUIDE.
Steve:PCPs?
Sonia:Primary care clinicians. So primary care docs are referring as well. It is absolutely not meant to replace those services, but really just an additional layer of support.
Steve:Wow. I mean, we both heard this term, we had no idea about it, and frankly, when I read the website, I didn't really understand it as well as you've explained it, but you've done a great job of explaining it, and it sounds like an amazing service. Thank you for one, taking it on and deciding this is something valuable to add to what you're doing, and two, to make it something special. Because if it works here and you're helping other people make it work, it could be something that we all need, especially with the number of people that will come down with this disease.
Virginia:Yeah. Thank you so much for being here, both of you.
Sonia:Thank you.
Valerie:Yeah, it's been great.
Steve:And, everybody don't forget to subscribe. We're looking forward to having you as a regular content listener. Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.
