Informed Aging

Episode 77: Medicare's new GUIDE Model for dementia care

• Robin Rountree and Edith Gendron

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Robin: [00:00:00] Welcome to Informed Aging, a podcast about health, help, and hard decisions for older adults. I'm Robin Rountree, a former family caregiver. I've worked in the home care industry and now work for the Alzheimer's and Dementia Resource Center.
With me is my co-host. 
Edith: Hi. Thank you for joining us today. I'm Edith Gendron, Executive Director of the Alzheimer's and Dementia Resource Center. I have 40 years of working with adults, primarily with seniors and elders in need. I'm a certified Positive Approach to Care trainer and consultant, and ADRC is a designated Positive Approach to Care agency.
Robin: The thoughts and opinions expressed belong to Edith and I, not our wonderful employers and sponsors. This podcast is a service of the Alzheimer's and Dementia Resource Center. We are not affiliated with the Alzheimer's Association. Before making any significant changes in your life or your person's life, please consult [00:01:00] your own experts.
Edith: And today, our guest is Maureen Rabizinsky, and boy, you better stick around. 
Robin: [00:02:00] We are back, and Maureen, we are so delighted 
Maureen: that you could be here. Thank you so much, Robin, and thank you for having me, and thank you for what ADRC does here in the community for our patients and caregivers. Yes, 
Robin: we work together quite a bit, even though we rarely see each other.
Edith: We surely do. Yeah, we couldn't, we couldn't do what we do without Maureen and Dr. Laird Yes. 
Robin: Yeah. So let's talk a little bit about all of your expertise.
Edith: Maureen, she has, A long list of things, and I'm going to do my best to try to get them in in under half an hour. How's that? Is that good? Um, UCF and University of South Alabama alumni, post graduate nurse practitioner [00:03:00] and certificate in adult gerontology primary care.
Yay! 30 years of nursing experience encompassing everything from hospice to home health. And I'm going to say kind of most recently, about six years with AdventHealth's Memory Disorder Clinic where Maureen and Dr. Laird came together. And now Maureen is the chief clinical officer at My Memory Clinic, 
Robin: which is, uh, Amazing.
Yeah. 
Edith: Um, seriously, how every week we're referring people. We always refer you the tough people, sorry. Yes. People with the big, the big problems and that's what we thrive on. Yeah. It is telehealth. So, , if you're interested, that would be mymemoryclinic. org and you can kind of explore 
Robin: that. And you are seeing anybody in the state of Florida, if I'm correct.
Maureen: That's correct. Anywhere in the state of Florida. Yeah. So, which makes the telehealth platform, , really open up the access to [00:04:00] dementia care. All 
Robin: right. So, we are so excited to have you on today because the government is stepping up and doing something about dementia. They've done some supporting research.
I get that. But the caregiver, to the person living with dementia has not gotten a lot of support, but there's something coming and you are here to tell us all about it. It's called Guide. 
Maureen: Yes, there's a new program and it's not coming , it is here and ready. So Medicare has launched a brand new program called GUIDE, which stands for Guiding an Improved Dementia Experience.
It was launched July 1st, 2024. When we heard about this, we're like, this is amazing. What it is, is it's a program aimed to support those with dementia and their unpaid caregivers. Hallelujah. [00:05:00] Exactly. Seriously. Yeah. Crack out the champagne. Right. When we heard about it, we're like, there's got to be a catch.
So, but there's no catch. It's just a whole nother layer of care and support for these folks that we've been trying to get and for their unpaid caregivers. It started July 1st. It is going to run for eight years. Wow. And the best part, there is absolutely no cost to the beneficiary. What? 
Edith: Isn't that amazing?
It's amazing. We got it right for her. 
Maureen: We got it right. So when we heard this, we're like, okay, how do we sign up? Well, we had to apply just like any other clinic throughout the entire country. It's nationwide. So we applied, the application was quite lengthy, but it was the care model we've always done. And plus more.
So, we applied and my memory clinic was selected. There's approximately 14, uh, guide [00:06:00] clinics in the state of Florida. Wow. We're one of them. So, what does that mean for our patients? It means that they now have this dementia program that they can sign up for if they are a beneficiary of Medicare. 
Robin: Now let's stop right there before we get too many hopes up and we want to clarify this is only for.
Medicare, not a Medicare Advantage plan. 
Maureen: Yes, and as you know, Medicare can be very complicated. Yes. So, to make it very clear, the, uh, the patient with dementia must have Medicare A, Medicare B. And they need to not have a Medicare Advantage plan, nor can they be enrolled in a hospice benefit because that's already a Medicare benefit.
So this is so important news to get out because right now this is open enrollment. Yes. So if someone has a dementia diagnosis. [00:07:00] And they have a Medicare Advantage, they would not be eligible for this. And the best part too of this program is if the patient qualifies for the guide program, they are entitled up to 2, 500 a year at no cost for respite care for their unpaid caregiver.
That is incredible. 
Edith: That is so important. And I mean, that's just. Common sense in some ways, as corny as that sounds, because our care partners, our caregivers, they need to step away from caregiving, no matter how much you love someone, you've got to get a break. You've got to. You've got to. Complete break.
And that's perfect for 
Maureen: it, right? So the 2500 does go quickly, but it can be in many ways. It can be used for adult daycare, say about 38 days a year. The 2, 500 would cover. It could also cover someone coming into your home from an appropriate approved agency in four hour blocks [00:08:00] of time. You could use four hour block or you could use a weekend block.
It also includes respite in a facility where they go maybe for a weekend or a week when you take a vacation. Can you imagine as a caregiver? So those are the options that they have. But the one caveat is a partner, uh, which would be this adult daycare. which would be the skilled facility where they would go for respite or someone to come into the home, they must be a partner approved with a guide participant clinic.
Robin: Okay. So you just can't say my neighbor Mary's going to watch him for the day and I can pay her. Exactly. 
Maureen: So say there's Uh, a company down the street, they want to be a guide partner. They contact My Memory Clinic or any other guide approved clinic, say, I want to be a partner. They fill out the paperwork.
We send it to Medicare. Medicare approves them, checks them out, and if all is [00:09:00] good, they're good. they become a partner and we can use them. So we try to compile a list of many different options for the caregiver. Uh, not just one daycare, not just one private duty care, not one facility.
That's what we try to do. 
Edith: I think Jessica Branning, who is also, involved in the foundation of, uh, My Memory Clinic, I think she helped one of our local, home help, um, private home health agencies. get involved with Dr. Laird's guide programs. 
Robin: Yes. I think they're also a sponsor.
Edith: Oh, that one too. Yes. Yes. So then now I know three.
Okay. 
Robin: Yes. So Senior Helpers, who sponsors us, is part of the guide program. 
Maureen: Yes, they are part of the guide program and we're thrilled to have them. Yes. And one of the requirements of the guide program is a home safety assessment. So and, uh, at no cost. It's part of what Medicare will pay the clinic to do.
And so we do [00:10:00] a home health, or a home safety assessment, and Senior Helpers does that for us. They help us, they have a wonderful program with an assessment, and they do the assessment, they bring it back to us for our review, and we incorporate that in the care plan. 
Edith: They do have one of the best assessments t ools, if you want to use that word, senior helpers, they really do, , support aside, you call it what it is, right? Excellent. And 
Robin: I want to say, you're saying unpaid caregiver, which is kind of like the Medicare term. We're talking about daughters, sons, spouses, friends, the people who are in the loved one's life who are not getting paid exactly and the whole, 
Maureen: the whole point of this is to keep the patient home out of facilities, but able to support the caregiver for respite. So if someone lives in a skilled nursing facility, they would not Um, be eligible. But [00:11:00] if they live in assisted living, that's their home.
So assisted living, memory care, those are not skilled nursing facilities. So those folks also, can get that respite because many times in assisted living, the daughter will go every day to to help mom with her shower or in memory care, feed dad 
Edith: or give medicines, give 
Maureen: medicines. So just because they're in these facilities, they have to be assistant living.
So I'm kind of to recap, I always say there's three criteria to become part of the guide program. One, the patient must have a dementia diagnosis. If they don't, they can come to my memory clinic and we would do the workup and decide if this is. normal aging or a dementia diagnosis. Number two, they must have traditional Medicare.
They can't have a Medicare Advantage. They can't have hospice. And number three, they have to go to an approved guide clinic. which would [00:12:00] be My Memory Clinic, or on the website, a CMS guide model, they can look there to see who the, , participating clinics are, and they can see which ones are in Florida, if they have a loved one in California, which ones are in California, Medicare has that Right up on their website.
If you go to CMS guide model and just google that. All right We'll put that link and then in 
Edith: the show notes. Yeah, that was gonna be my question How do people outside of Florida right fine because you know, Florida Good good to know good to know Are you getting? A lot of response, so you're getting a lot of inquiries.
Maureen: Well it's interesting because our clinic is a dementia clinic. So all of our patients usually will have a diagnosis of some type of dementia. Some might just have mild cognitive impairment. Mild cognitive impairment does not meet this criteria. Only a dementia diagnosis. Anything from Alzheimer's disease, [00:13:00] Lewy body, frontotemporal, any of the dementias.
We already have a big list of patients that we have to go through and we see who has traditional Medicare. We offer it to them, which is interesting, Medicare says you must offer it to every Medicare beneficiary. Nice. And it's voluntary, so they can say, yes, I want it, Maureen, or no, I don't. So I always often say, well, why wouldn't you want it?
And the responses I get, it sounds a little too good to be true. Medicare has never done anything like this before. And I said, it is true. Well, what's the cost? There's no cost. It's there's, it's free for the beneficiary. You have already paid your Medicare premium. You've paid that. So it's part of it. Well, I want to keep my same doctors.
You can. Okay. You keep your primary care, you keep your cardiologist, you keep whoever you want. [00:14:00] We are your dementia specialist, just like any of your other specialists. So um, when I tell them that, then they're like, sign me up. So we have had a really wonderful response. Good, good, 
Edith: good, good. I wonder how much, It would affect enrollment, trying to pick my words a little carefully here, uh, for people who didn't have just traditional Medicare, and I know during open enrollment, you can do a lot of wonderful things.
I wonder if people, , would, Take a good look at it and realize how good it is, and then perhaps make some good decisions to be with traditional Medicare than being with an entity that says, Well, yeah, but I'm going to give you 100 card for free groceries. It's like, 
Maureen: Exactly, so you have to look at the diagnosis.
I think anyone that has a dementia diagnosis that is of Medicare age, they need to look to see what kind of plan they have. Some will ask [00:15:00] me, well, I don't know if I have traditional or Medicare Advantage. Tell me the difference. So I don't get into that at this point, but basically it's if your card says Medicare Advantage.
That's not traditional Medicare. It has to be that red, white and blue card that says a and b. So I, I urge people to do this. It's for the next eight years. So what's included in, in addition to this 2500 and just to go back a moment. When Medicare receives the information that we do for the guide model on this patient when we evaluate them, they come back in a low tier, a medium tier, or a high tier.
The medium tier and the high tier are the the ones that are eligible for the 2, 500. Low tier are not eligible, but as you know, in the dementia world, that can change. Yes. Oh, 
Edith: yeah. They can change in a month. Yeah. It can 
Maureen: change in a month. Yeah. So, um, so that's [00:16:00] why I encourage everyone to look and see what kind of plan you have if you are caring for a loved one at home with a dementia diagnosis.
Robin: Now I know one of the things we worry about with our people living with dementia is the emergency room visits. Do you think this program will help decrease those? Yes. 
Maureen: So part of the plan is that we have to meet nine criteria. Of the guide plan. It's kind of a standard of care. So one of those things that is required is a care navigator.
So by enrolling in the program, Medicare has allowed us to hire a care navigator who checks in with these folks and their caregivers once a month. Wow. That's in addition to the to my regular visits of seeing these patients. So every month, Hello Mrs. Smith, I'm calling to see how's your mom doing?
What's going on? Well, her behaviors are getting a little, um, troublesome around 4 [00:17:00] o'clock. Okay, so let me take some notes. I will send this to the provider. And then we jump on their problem before they get into the emergency room with a delirium of some sort. So it's a way to do a comprehensive evaluation, ongoing support, ongoing education where you all help us as well.
And we have this care plan that is ever changing and that's what we do each month. So what a great program. That's what it's about. 
Edith: I hope someone at CMS is tracking the effect of this program not only on the person living with any form of dementia, but on the caregiver, because you know, we lose about half of our caregivers before we do the person living with the illness.
Um, and this is. Absolutely geared toward, in my mind, reducing that negative impact. 
Robin: And can you just say that again, because that's [00:18:00] a big thing a lot of people don't realize. 
Edith: People that do not have the help they need, let me be very clear, you do not have the help you need, and it varies with every person, with every situation, run, um, a great risk of dying due to stress related illnesses before their person.
And we see it all too often. Yeah. 
Maureen: Absolutely. Thank you. 
Edith: all too often. Um, and if you want to get even scarier, um, uh, a friend and colleague of Dr. Laird taught us that those who do not get the help they need on a daily basis, on a weekly basis, will go on to develop Alzheimer's disease themselves at a frequency of 300 percent greater than those who have it.
at least some of the help they need. So my point here is guide is more than just convenient help. It is actually a positive impact on your health going forward, your health care partner. 
Robin: Yeah, because you've got somebody who's checking in once a month. And can you call that navigator if something pops up?
Maureen: [00:19:00] Absolutely. That's one of the criteria of the guide program is we have to have a 24 seven. Helpline, if you will, but there's always someone on call that you can call and getting chills. What do I do? What do I do? Yes, so, you know, it's just overall it's a wonderful program But I want to tag along with what Edith just said about the caregiver Medicare does have it right this time because when they Assign a tier to the patient.
Mm hmm One of the criteria is the caregiver has to do a Xeret burden scale. And this is a questionnaire with 22 questions about the burden that you feel as a caregiver. Wow. So I tell the caregiver. We all want to be brave. We all want to say we're doing everything and we're not burnt out or we're not stressed.
But I want you to be honest when you answer those questions. What was your worst day? Answer those questions. Because that [00:20:00] score will determine, along with the stage of dementia, if your loved one is uh, qualifies for respite care. 
Edith: And the caregiver burden scale, we use that as well when we are doing pre and post for certain workshops.
And we say essentially the same thing. It's you always look at the worst day because you always underestimate Exactly. How difficult things are. Yes. I, I threaten them that I will come home with them and follow them around and I will make a list and we'll compare it, right? And mine's going to have a whole lot more stress or stress related activities on it than theirs will.
But yeah, because, you know, sense of duty, that sense of love, but at no time should anyone ever feel that they have to give up their life for another person. 
Maureen: Exactly. Yeah. That is so true. And to just have help in some sort of way and to know you have that person to call. You [00:21:00] have that care navigator. You have that provider who the care navigator can get the information to.
You have that helpline. I'll just give one example. Um, I had a patient, she has. early stage of dementia. And as you know, with dementia, a lot of times mood, um, comes into play and she was showing signs of depression. So she, she went to her primary care and said, I'm really feeling depressed. They thought that she needed a medication.
She was put on a medication. And when I went to do my guide visit for her, she goes, Maureen, I don't know what's wrong. She goes, feel suicidal. Like I want to die. Oh, and she, I, but I just started an antidepressant and as we know, there are certain antidepressants that can do that. So we, I mean, that's like, it gives me chills even thinking about it.
So of course you wouldn't have had that monthly call if we [00:22:00] didn't have that monthly call, we would have never known. And, um, she would have been suffering and God forbid what would have happened. Yeah. Heaven knows. You know, so we were able to do that. So that's what Medicare is looking at. And this eight year program really is a study as well.
They are going to follow to see how many were, how many hospitalizations? Because when I hear a dementia patient is hospitalized, that's my worst nightmare. So I will do whatever it takes to keep them home. Yeah. Yeah. 
Edith: Yeah. It is. It is awful. Years ago when I was responsible for an assisted living and someone had to go out, you know, to the ER, I wouldn't let them go alone.
If family couldn't come and or meet them there, they went with a team member because it's awful. 
Robin: And why? Why is that awful? 
Edith: I'll say this much, overworked people in ERs have, remember I have that daughter nurse practitioner who was in an ER for a long time. The dementias are poorly misunderstood or poorly [00:23:00] understood, I should say.
Oftentimes what is looked at is how to control that person. So maybe they get out restraints, maybe they knock him down with a hound doll. Go ahead, do that with someone who has Lewy body and didn't tell you and you don't know. So they're just fraught with danger on many, many levels from my perspective.
Maureen? 
Maureen: Yes, exactly. So I think it's again, it's the staffing in the hospital situation. provide the care that these folks need. And by the time they get to the hospital, usually they are very disoriented. You have to think they're out of their normal environment, right? Uh, their medications might not have been given yet because it's still down in pharmacy.
So they missed a very important medication at 12 noon and at 6 p. m. at night, which could just set them off for the whole day. Um, you know, there's just so many, you know, a lot of training is needed for the staff and you know, in a hospital setting, they don't get a lot of training on how to deal [00:24:00] with these types of folks and their behaviors.
So I just, I really, I know there's a time and a place for, uh, some of our patients, but. majority they need to stay away. Yeah, they do, 
Edith: they do, they do. I mean if you've got a compound fracture, okay, all right, but bring somebody with you, right? Yes. Seriously, it's not a place you want your person to be. Right, right.
Without, without a good advocate. 
Robin: Now, are you telling the people in, in in the guide program about like services that we offer, support groups and making sure they're aware of that. 
Maureen: Absolutely. Because as I mentioned, we have to formulate a care plan and one of the nine criteria for the guide is to have caregiver education and support.
So every single patient that I sign up for guide gets a referral. To ADRC and now we have a system down where we're going to be sending these referrals to [00:25:00] Edith, but at the very least they have your phone number and they have an explanation of what you all do, which is just tremendous. So yes, you are part of our care plan.
Yeah, there 
Edith: you go. And just, um, so, you know, when the rest of Florida knows we are looking at expanding more of a presence. In Brevard and Osceola counties, we, we, we say, if you call, we'll answer. I don't care where you're calling from. And we do serve about 21 counties with the brain bank and other things.
So we do serve all of Florida. When I say an increased presence, I mean, on site or in person workshops and those sorts of things, or a couple, two, three times a week being over there for the care coachings and things like that. So that's what we're hoping to expand into next year. 
Maureen: Oh, that's excellent.
Yeah, that's excellent. And that will, that's why you all are such a big part of this program as well. Yes. Awesome. 
Robin: So if somebody is like, [00:26:00] all right, I believe you, this isn't too good to be true. How do they find out more? 
Maureen: So what they do is. They would contact MyMemoryClinic. We have a phone number,
it's 321 247 7063. Also, they can go right online. The caregiver can go online to MyMemoryClinic. org. There's a little button that says, Make an Appointment Now. You pick one of the available slots, and And then our staff will call you back to confirm and tell you, you know, what you need to do, what kind of paperwork and such that will just kind of secure your spot.
So either a phone call or online and just say, I'm interested in the guide program. If even if you're not interested in the guide program, Dr. Rosemary Laird and I, myself, we take care of all kind of folks from those who are worried about their memory to those with mild cognitive impairment to early stage dementia, middle stage, [00:27:00] late stage, all the way through end of life.
It's a journey. 
Edith: Yeah. 
Maureen: So glad you're there and you can do it. 
Edith: Oh my gosh. We, I sincerely, I'm trying to get a quick number out of my head on how many people that have come to us with. Big challenges in that world of dementia regardless of type that we say, yeah, here, here, contact my memory clinic because you do have answers and interventions for people who are having a very, very rough ride in this voyage.
Maureen: Exactly. And, you know, Unless you're in this space of dementia care, you know, you really don't know who to go to. Do I go to a neurologist? Do I go to a primary care? Well, who are these dementia specialists? And do I go to a psychiatrist because mom's depressed?
There are so many questions. So I always say, you Um, if you [00:28:00] start with your primary care, they all often will possibly do a screening, but that screening is about three to four minutes where when you come to a dementia specialist, our initial visit, if you are worried about your memory is one and a half hours.
So I do, um, myself and Dr. Laird, we do a comprehensive assessment. We look at the whole person. We look at their mood, their sleep, their weight. their appetite. We look at their memory. We do a cognitive test. And then if we need to do the workup that's necessary for a diagnosis, then we ordered that we manage meds.
We are very, up on all of the newer meds that are available. So people want to know, tell us, what can I do? What can I do? So we now, are armed with that knowledge as well with some of the new FDA approved medications. 
Edith: Yeah, yeah, yeah. Another number I wish I'd kept better track of is how many people say, and I mean [00:29:00] this utter and complete sincerity, I love Maureen.
I love her. She saved my, and then fill in the blank, she saved my day, she saved my life, she saved my, yeah, she saved my, my, my psyche, my sense of well being. So you know, Atul Gawande and the sense of well being is something we impart to people being important. But so, yeah. From ADRC, thank you for what you do and for being there and being accessible to people and being real and honest.
Maureen: Thank you so much. I really appreciate that because I think when, you know, you look at this journey, , I find it to be an honor to to walk that journey with these people. And it just, I see that with Dr. Laird. She taught me so much and I, I can't even, there's not enough words to describe her knowledge and her ability to take care of these people.
I just, , it's really a pleasure. 
Robin: She's incredible and she's been on our podcast [00:30:00] several times and Maureen, could we talk you into coming back? Absolutely. I would love to come back. Wonderful. Well, please make sure to subscribe to our podcast. It's called Informed Aging. Tell your family and friends about us. If you'd like to support the work that we do at the Alzheimer's and Dementia Resource Center, please go to adrccares.
org slash donate. We're also at facebook. com slash informed aging. Today's episode was recorded at ADRC's podcast studio. That's it for now. We're looking forward to our next visit