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Health Navigators Improve Dementia Care: Podcast with Kate Possin and Sarah Dulaney



Do you remember the scene from the movie The Graduate where Ben's dad says, "One word: Plastics"?

Well, I write this blog post from the National Palliative Care Research Center's annual Foley retreat, a who's who of palliative care researchers.

The words on everyone's lips: "Lay Health Navigators."

This is not to draw equivalency between environmentally destructive materials and people who help those with serious illness and caregivers navigate our complex health care system.  Rather, it's to point out that revolutions occur in palliative care research just as they do in business.

In this week's podcast, we talk with Kate Possin, PhD and Sarah Dulaney, RN CNS of UCSF about the Care Ecosystem project.  In this remarkable study, published in JAMA Internal Medicine, lay health workers helped caregivers of persons with dementia navigate the health care system by providing support, education, and care coordination with dementia specialists.  The intervention was mainly by telephone, with about 1 phone call per month.  Results were remarkable, including improved quality of life for persons with dementia, reduced emergency department visits, and reduced caregiver depression and burden.

As Nick Dionne-Odom pointed out yesterday, "Caregiving in dementia is a monumental task.  There is tremendous room for improvement."

Listen or read on for more!

Also - be sure to check out the outstanding Care Ecosystem website: https://memory.ucsf.edu/research-trials/professional/care-ecosystem.  The training materials are all FREE to use!

by: @AlexSmithMD




  


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TRANSCRIPT

Eric: Welcome to the GeriPal PodCast! This is Eric Widera.

Alex: This is Alex Smith.

Eric: Alex, we have some people, very special people in our studio audience.

Alex: Some very special people in our studio audience. What?

Eric: Studio audience? Studio ...

Alex: In our studio.

Eric: It's not like it's almost our hundredth podcast. I should have this intro.

Alex: You should have the intro down by now.

Eric: Yeah, down pat.

Alex: We have Kate Possin, who is a neuropsychologist at the UCSF Memory and Aging Center. Welcome to the GeriPal PodCast, Kate.

Kate: I'm very happy to be here.

Alex: And we have Sara Dulaney, who's a clinical nurse specialist also at the Memory and Aging Center. Welcome to the GeriPal PodCast, Sara.

Sarah: Thanks, I'm a big fan.

Alex: All right.

Eric: I am super psyched about this podcast, because I think it's amazing. It really is. The more I read about it, and I went through all your online stuff, the more excited I became about this.

Eric: We're going to be talking about the Care Ecosystem; it's a JAMA paper that just came out in Internal Medicine. I guess Care Ecosystem isn't a JAMA paper, but they just published in JAMA Internal Medicine about this project. And we'll talk more about that.

Eric: But before we do, do you have a song request for Alex?

Sarah: Yes, we do. It's Forever Young by Bob Dylan.

Eric: Oh, when you said Forever Young, I thought it was Alphaville. Anybody remember the German synth pop band, Alphaville? Remember?

Alex: No.

Eric: (singing).

Sarah: Oh, I do remember that.

Kate: Ah, yeah. Let's do that one.

Alex: Ah, I didn't prepare that one.

Eric: That was the one we should have had John Newman do when he did it.

Alex: Oh, right, right.

Eric: Living forever.

Alex: We did Who Wants to Live Forever by Queen.

Eric: Yeah. Oh, yeah. I didn't know this one.

Alex: Here we go. Bob Dylan classic!

Sarah: Do I get to say why I picked this one?

Alex: Yeah, why'd you pick it?

Eric: Why'd you pick it?

Sarah: Because my mom sang it to me when I was a kid.

Alex: Really?

Sarah: Also because the director of the MAC, Bruce Miller, is a big fan of Bob Dylan. So two reasons.

Alex: Ah.

Eric: Does he like Alphaville, though?

Sarah: Probably not.

Eric: Probably not. Alphaville, if you're listening, we are sorry.

Alex: (singing).

Kate: (singing).

Sarah: (singing).

Alex: Nice.

Eric: Nice!

Alex: Great.

Sarah: We've got disco fever.

Eric: (singing). Before we jump into the JAMA Internal Medicine paper, and Care Ecosystem, I'd just like maybe take a step back. How did you get interested in this, in particular dementia and helping caregivers? Either of you can start.

Kate: Wow, I think we've both been at it for such a long time. I can say why I got so excited about the idea of the Care Ecosystem.

Kate: I was a neuropsychologist studying brain behavior relationships and taking care of patients at the Memory and Aging Center. And noticing we were providing quite good care at our tertiary center. But that most people with dementia in their families were not receiving this type of care. Most never even see a dementia specialist.

Kate: I felt compelled, along with my colleagues, to design a model of care that could reach patients and families wherever they live. This idea really took us on this journey to the Care Ecosystem, and the continued journey to try to transform dementia care.

Alex: And how about for you, Sara?

Sarah: Well, if I really step back, I was a modern dancer. I got into this because I had to have a side job to support myself.

Sarah: I worked with people with developmental disabilities. One of the people I worked with, her mom, she was in her 60s. And her mom was 80, a single mom, raised this woman with a developmental disability. Her husband left and everything.

Sarah: I ended up being an AmeriCorps volunteer and working with people with developmental disabilities and went from that to dementia.

Sarah: I was a live-in caregiver for two years as an AmeriCorps volunteer. Just kind of, I love people with different behavior. It's super interesting and working with caregivers I've, yeah, I think that they're just like the heroes of today.

Alex: You started out as a modern dancer, and then became a geriatric clinical nurse specialist as a side job? And now that's your job. I guess it's a fascinating pathway that people take. It's great.

Sarah: A lot of prerequisites from dance to this.

Eric: I think that's the fascinating thing. Especially in dementia care. But really, in care for most older adults with multi-morbidity, frailty; we rely on caregivers so much from a medical system. But we do almost nothing for them. It's impossible to find the name of a caregiver in most EHRs. It's just not there.

Sarah: Thank you!

Eric: But we can do [TAVRs 00:05:46] and these really expensive procedures, but God forbid, we do anything for the person who's actually keeping this individual at home, let alone naming them in any EHR.

Sarah: And if they didn't exist, good luck with your patient. Especially if they have cognitive impairment.

Sarah: I mean, aside from putting someone in a nursing home, which is really expensive and inappropriate for people through most of the course of their life with dementia, there isn't a program or system that can do everything that a caregiver does.

Eric: Yeah. Very rare programs out there to help caregivers. Aside from the one that you guys just made! Care Ecosystem. Can you give us a little bit of background; what is Care Ecosystem?

Kate: Absolutely. All right. The Care Ecosystem does indeed think about the patient and the caregiver together in providing the care. That is really at its core.

Kate: We pair that team with our care team navigator; the care team navigator's an unlicensed dementia specialist. We train them, so it could be somebody who's fresh out of college, maybe wants to go on to be a nurse or a doctor in the future. And they go through our training program.

Eric: So they don't need any formal medical training prior to your training.

Kate: That's right. The training program usually takes about a month with us. And then they're ready to go.

Kate: The key ingredients in a navigator is not what medical degree they have; it's that they have a lot of empathy, that they communicate well on the phone. That they're excited to help our people with dementia and their families navigate this complex disease. Those are the key ingredients.

Kate: We pair a care team navigator with the family, and they develop a relationship together. They're over the phone; it's all over the phone, Internet as well. And the care team navigator ... Yeah?

Eric: Do you have video conferencing Internet? Or what-

Kate: If they want. It's up to the caregiver. If they want video conferencing, we'll do it with video conferencing.

Kate: But I'm surprised that not as many people have wanted video conferencing. But the people who do, are pretty reliable. Sometimes people, we have to talk to them when they're on their lunch break at work, or driving home from work, on the phone, so video is not really possible.

Eric: So no in-person visits. This is all done-

Kate: There are some in-person visits, so some of the people enrolled in our study are also seen at the Memory and Aging Center Clinic, and caregivers love the opportunity to meet people. If the person is still coming in to clinic, they'll ask if the navigator can come to the appointment with them.

Kate: They love that. But it's not always possible and we serve people across the state of California, across, I mean, our partners, UNMC in Omaha, Nebraska, serve Iowa and Nebraska. Phone is for the majority.

Eric: Wow.

Kate: The first thing that people think when they hear it's a phone-based program, is, "Wow, great, that probably saves a lot of money." And maybe that is true. We think it is true.

Kate: But, we think it's actually better care for these families. They can get the help when they need it; they don't have to make a doctor's appointment; they don't have to take their loved one with dementia into the car and drive to that doctor's appointment.

Kate: No, they get help when they have an urgent situation. When the patient's acting agitated and they don't know how to handle it.

Kate: Furthermore, we can reach patients and families wherever they live. There are many parts of this country where there are no dementia specialists. That lifeline to us is the only access that they have.

Eric: I loved your map on the JAMA Internal Medicine article. You can actually see where these individuals are, and it's not just in dense urban areas like San Francisco.

Eric: It's in Central Valley in California; it's in northern ... Most people think of northern California as San Francisco. But we have hundreds of miles north of us.

Sarah: Mountains, yeah.

Eric: ... it's really rural. And there's little dots all over there.

Sarah: Yeah.

Alex: It's interesting. Do you give them, these persons with dementia, their caregivers, instruction that if you have an emergency, call us first?

Kate: No. We have a guide because we're not providing the medical care for these people.

Alex: Right.

Kate: So we come up with a plan for them for if ... we actually developed a little guide. If they're having something like a rash or an upset stomach or even a sudden change of behavior, they can call us for that. But we teach them about delirium really early on. Your really sudden changes in function or behavior is something that often needs a medical evaluation.

Kate: We also give them the 24-7 help line from the Alzheimer's Association, because that's an important resource. It really can help people de-escalate a situation; if any, 24-7. We rely on that for people after hours, because we're not a 24-7 on-call service.

Kate: We give them guidance around when you actually do need to take someone to the emergency room if they're having difficulty breathing, or if that's part of their goals of care.

Alex: This is fascinating. We have had a couple of podcasts now about the navigators, lay health navigators, community navigators, et cetera.

Alex: One of the key pieces is always what kind of training do they receive. I hear that they're trained about delirium and maybe rashes; can you tell us what else you cover in that one month?

Kate: Well, they're not necessarily trained about rashes.

Alex: Right.

Kate: It isn't like they can't handle rashes.

Alex: Okay.

Kate: It's mostly about learning their scope and-

Alex: Right. What's within the bounds and when they need to refer to somebody else.

Kate: Right. Right. They have a lot of standardized materials. When I mentioned this guide, it's written down on a, I think it's called a safety plan. It has their doctor's information and who to call when. And it says when to call their CTN. It's mostly around when they need someone to talk to, or when they're not sure if this is normal or not with dementia.

Alex: CTN being care team navigator.

Kate: Right.

Alex: Tell us what else was in the training in this one month for these navigators?

Kate: Well, we have Aging 101 and Ethics, as taught by Anna Chodos, the geriatrician from UCSF. We have medication; that's Medication Issues in Aging with Dementia, which is taught by pharmacists. We had Kirby Lee, and now we're working with Shanalee Lynch.

Kate: I do a Dementia Basics, and we talk a lot about behaviors. Jennifer Merrilees, another clinical nurse specialist investigator on our team, talks about behaviors and also caregivers, supporting caregivers, caregiver challenges.

Kate: We have a social worker on the team that talks about benefits, Medicare, Medicaid, other community benefits. And an attorney, Sarah Hooper, from the UC Hastings, and Winston Chiong, a neuroethicist/neurologist. They've really put a lot of thought into advanced care planning, both medical, legal, and financial.

Kate: So they get training on capacity in dementia; not how to determine capacity, but just being aware that it's really important to get advanced care planning conversations in while someone has capacity.

Kate: Also learning about end of life and the kinds of decisions people have to make, and supporting them in making these decisions, trying to honor the person's values.

Eric: That's a pretty amazing all-star cast there. When I first read this article, part of me felt like, "Okay, I've seen this before. This is stuff that's going to be published. Nobody's going to really have access to it except for this local institution that does this."

Eric: But then I started reading through your stuff, and clicking through all the links. You can actually go to your box folder and download all this stuff, go to your website and actually do the training.

Eric: I was so impressed how available this information is. I was just downloading stuff left and right today, just to see what's there.

Kate: And the whole training program, too, is all available now for free through Canvas. If a health system wants to adopt this program-

Kate: Right, so a health system leader can go and access all of those video trainings for new care team navigators, and get them up to speed.

Eric: That is so ... I mean, the thing that made me ... like I'm really cynical now after the MOCA started charging for use. I'm just so impressed by making this very open access, so anybody can actually use these tools. It's really refreshing. Thank you.

Kate: I think the other thing about that is we've done things a certain way here, that works for our team and UCSF. And our implementation sites are all adapting for their setting. I think we're learning a lot from ways that they're adapting it. I think people don't have to try to do exactly the way that we've done it.

Kate: I mean, we've had to do it a certain way because of being a randomized controlled trial, and also not being linked necessarily; people aren't all UCSF patients, that we're serving people outside of our health system. Whereas our implementation sites are serving people within that health systems; there's some adaption for that.

Eric: We'll have links to all of your website and some of this material on our GeriPal post that's going to be accompanying this podcast.

Eric: I was also wondering, are there key protocols that these CTNS, care team navigators-

Sarah: Care team navigators-

Eric: ... that they, you guys made sure that they did throughout the course of their time with our caregiver?

Kate: Well, not everybody is going to get through all of them. We do train them to; that's the goal, is to go through all of the protocols, which include advanced care planning, medication review and reconciliation, checking on medication changes, behavior management safety screen, and attending to caregiver well being, specifically. Referrals to community and education resources; that's sort of an ongoing thing.

Kate: Some of the protocols; I think they're probably following some of it on every call. And others, it just depends on whether the caregiver can get there.

Kate: Some caregivers don't necessarily want to be caregivers, and they are really resistant to anything around continuing that role, even though they might feel stuck in it. Yeah. It depends on how ... It's really individualized. So we have the protocols as a guide.

Eric: Who else is involved? You have this care team navigator, but there are other people that were involved in the Care Ecosystem, right?

Kate: I think the team-based aspect is really important because I think like you said, you're getting sarcastic about the MOCA. I think in dementia, there's this tendency to become fatalistic of, "Oh, I can't think of anything else that's going to work." That's what's important about having a team.

Eric: Yeah.

Kate: The evidence around medication or any of these strategies is not so strong that you can just say, "Black or white, this is what you should do."

Kate: It's helpful to have a team to discuss, "Well, this is what's going on; what do you think?" The caregiver's going to have their own opinion. So it's really a collaborative process.

Kate: I think that team aspect; we meet every week, and we discuss challenging cases.

Eric: Who's on that team?

Kate: All the care team navigators, and then in our in-person weekly meeting, we have the two clinical nurse specialists, and then our social worker.

Kate: And we have a monthly call with our pharmacist, because we found when the pharmacist was in on the in-person meetings, the medication aspect really dominated the discussion. So we saved the medication call. Then they're available to consult electronically, outside of that monthly call.

Kate: But yeah, our weekly team meeting is the social worker, nurses, and care team navigators.

Sarah: It's a lot of fun.

Alex: Yeah. We have some understanding of what the Care Ecosystem intervention involved. Now you studied it for this manuscript here, and it looks like you had three sites, as you mentioned. You had basically two main hubs-

Kate: Right.

Alex: ... but you recruited patients from California, from Nebraska, and from Iowa. You have a single-blind randomized trial. You had 2 to 1 patients with dementia and caregiver dyads, and about 500 and then 200, about 250 dyads who received usual care. So about 500 in the intervention and about 250 in a control group.

Eric: Was it hard to recruit caregivers?

Kate: Well, we found the easiest ... We tried lots of methods to recruit, because we had very ambitious recruitment targets, as you can see. We tried a number of different methods. The method that yielded by far the most dyads is by working directly with trusted providers.

Kate: Going to primary care physicians and using their EMR to run lists of patients with dementia, and then writing a letter to those families, signed by the physician, inviting them to participate. Then we'd follow up via phone.

Kate: This got most of our patients; but what we found is we are getting a bias in our sample towards people who had more education, more resources, using this method. So we then did a lot more community outreach to try to bring in people from more underserved communities, giving talks or connecting with community organizations.

Kate: It was lot more work for each enrollment, but it helped us bring in more underserved people, including modeling goal Spanish-speaking and Cantonese-speaking cohorts.

Eric: Is this designed for all stages of dementia; mild, moderate, severe, when we're thinking about who this is appropriate for?

Sarah: Yeah, and we follow people ... I mean, it's been a real pleasure and joy to follow these people from the study. Some of them we followed for four, almost five years. It's really, you get to follow them when they're maybe not even seeing their provider anymore; they're on hospice, they graduate from hospice, they're on hospice again.

Alex: I heard about that. Yeah.

Eric: So really, throughout the life course of-

Sarah: Yeah. Throughout the course. Yeah.

Kate: And we think that's so important. We really designed this model of care to work ideally from diagnosis all the way till the end stages of the disease. The care needs to be tailored throughout that. There's different needs that emerge throughout the different stages of dementia.

Kate: There's also times when things might be going pretty smoothly, and the family doesn't need a lot of help from us. But then, some sort of new crisis emerges, and it really helps them that they have that relationship in place.

Eric: What was the main thing that you're hoping to see? When you were doing this study, what were you hoping to see in the results?

Sarah: I mean, I was thinking more about just helping people [laughing].

Kate: Right. Yeah, we thought a lot about the outcomes; this was the first randomized controlled trial that I'd ever run.

Kate: We first and foremost wanted to improve the quality of the life for the family with dementia. This intervention is not designed to slow down dementia. It's designed to improve the experience for the people living with the disease.

Eric: Did it?

Kate: And yes!

Eric: Hey!

Kate: We were so thrilled that yeah, when you run a clinical trial, you have to pre-specify your primary outcome. That has to be significant for it to be considered a positive trial.

Kate: We were very fortunate that our primary outcome, quality of life for the person with dementia, was significantly improved in the treatment group relative to the control.

Alex: And that's as rated by the caregiver on a rather large scale.

Kate: Correct. Correct.

Alex: That covers a number of domains.

Kate: Yes.

Alex: Yeah. Is there any way of ... It's hard to quantify quality of life. Quality of life was improved marginally for a lot of folks? Or was it improved in a big way for a few folks? Or is there some way of ... because I see a beta co-efficient here, but I don't exactly know how to interpret that.

Kate: Everybody wants an answer to this question. That's a lot harder to answer than you might think at first blush; but on average, the treatment improved quality of life by half a point for each patient.

Kate: What does that mean? Well, if you move one point, that means that a key component of quality of life moved from poor to fair, or from good to excellent. That seems clinically meaningful to me.

Alex: Great. And you had other outcomes that you looked at. What were those outcomes, and what did you find?

Kate: We also looked at utilization by the patient. In other words, we looked at ambulance use, emergency department use and hospital use.

Kate: What we found there ... and this was all, again, caregiver report. We will be looking at claims data, from Medicare claims data, as that becomes available. This is all caregiver report. We ask every six months about the utilization.

Kate: What we found was that the program reduced the emergency room visits of the patient. This was really exciting; I think it suggests what we tried to do may have worked: reduce this crisis-oriented approach to care that we see so often in dementia.

Eric: Do you remember by how much did it reduce it? Roughly?

Kate: Well, what I can say ... Hold on. ... For every five patients who were enrolled in the treatment, we reduced an emergency room visit for one. The number needed to treat was five.

Eric: Wow!

Alex: Which is amazing, when you think about the number needed to treat for common intervention that we use every day in primary care; like statins for secondary prevention. I just looked this up, and the number was like 300.

Eric: Yeah.

Alex: So high. This, 1 in 5-

Eric: Yeah.

Alex: ... to prevent an emergency department admission.

Eric: I think Aricept doesn't do that. Yeah, everybody's off.

Alex: There was a line in your results section about cost outcomes. It wasn't a major feature of the paper, but it stuck out as potentially cost savings. Is that right?

Alex: When you added up the costs of the services that you provided, and the acute care visits that were avoided, it ended up being something ... was it around $600 per dyad?

Kate: Yes, that's right. We saw all of the cost savings in the latter six months. This was a 12-month trial, and it takes a while to get the care plan in place and work with the caregiver, adjust their needs first before interventions are implemented for the patient. All of these cost savings, about $600 per person with dementia, were realized in the latter six months.

Kate: We're now continuing this trial. We're continuing it for five years, and we're hopeful that we'll see those cost savings be maintained or grow even further.

Alex: That is fascinating.

Eric: So improved quality of life, less utilization as far as ED, and its cost savings.

Alex: Yeah, and how about the caregivers? Did you look at, study the caregivers at all? Any outcomes of that?

Eric: Wasn't that the quality of life?

Kate: That was for the patient.

Alex: The quality of life for the person with dementia as rated by the caregiver.

Eric: Oh, as rated by the caregiver. I get it now. Quality of life for the caregiver?

Sarah: Right. So, we measured the well being of the caregiver in three ways. All of them showed significant effects. We improved self efficacy of the caregiver by six months; they're feeling that they can take care of their loved one, that they're prepared for the future challenges.

Sarah: We decreased depression in the caregiver. This really important. We also had another publication recently in JAMA Neurology that showed that caregiver depression is a big predictor of emergency room visits in the patient. This may be one of the mechanisms by which we are reducing emergency room visits. We also reduced feelings of caregiver burden.

Kate: I think this is really important when you mentioned that there's no caregiver's name in the electronic medical record, because it's not even just that their name or phone number might not be there; but we're not considering how does this caregiver feel about managing this person's care?

Kate: I mean, caregivers' mental health in another city has been shown to affect the patients' mortality. I think we're really missing a big piece of what affects the patient's overall health.

Alex: This is tremendously exciting results. People are going to want to unpack this and see, "Well, you did this multi-component intervention; what worked?"

Sarah: What's the one piece we can take?

Alex: Right. Or, but from your angle, is it being embedded in this and doing this work for so long, are there any stories that you could carefully anonymize, for example? For public consumption about So-and-So.

Alex: "We reached out to this caregiver, they're having this issue. We addressed that, and we think that's the sort of impact that our study had."

Kate: The thing that ... the sort of thing that I think is the biggest secret of the Care Ecosystem is people think, "Oh, it's over the phone. What do you actually know? You're not in the house. You're not really seeing what their life is like. You're missing half the picture."

Kate: I think the fact that for some of the really people who need a lot more help, we also work with some caregivers who may have some cognitive impairment themselves; they're also in their 80s and they might forget the name of the care team navigator. And if they don't call them every week, they might forget to answer the phone or something.

Kate: Who else is seeing that person? They're forgetting their doctor's appointments or the doctors ... We've had a lot of people who the primary care provider has changed; primary care providers in some areas don't accept Medicare patients.

Kate: The continuity of care that the care team navigator provides. APS, you refer to APS; they close the case in a month, they may not open the case. They may not see the situation as dire enough, depending on their resources. We're able to keep at plugging away and making sure that someone is getting the help that they need.

Kate: Again, with the team of being able to think of, "What else can we do? What else? What other resource might be there?" We're able to just ...

Kate: The longitudinal aspect of following people and helping them make progress; I mean, yeah, I think the people for me that really make it ... We had someone who had a lot of ED visits. The caregiver was just super-overwhelmed, and his wife is so attached to him that she really, they had her in a nursing home temporarily and they just couldn't, she was constantly asking about her husband, where is he.

Kate: We were able to help them figuring out how to qualify for Medicaid, for example. If your income is sort of borderline, it takes a lot of skill and advocacy and just having paperwork.

Kate: Helping people access in-home supportive services, so at least she can be in the home with a little bit more help, and support for the caregiver.

Kate: It's there addressing their needs and advocating with the primary care provider that sometimes we need medications just so that this person, the caregiver doesn't lose it.

Eric: I love that aspect too because it really did feel comprehensive. It wasn't just about medications and polypharmacy and advanced directives.

Eric: But also thinking about those things that caregivers ... when you're a caregiver of somebody with dementia, when you're a loved one, it's like, "Oh my gosh, I never thought about what happens to the finances? Who's going to manage that? How do I even manage his finances? I don't have access to his banking; the banks don't ..." Thinking holistically what matters to people with dementia.

Eric: When I was looking through the program, I found a lot of those things are in there.

Kate: There are so many little things, you wouldn't even imagine.

Eric: Yeah.

Kate: We had one lady, she was getting older and shrinking. She had this hairdresser that she got her hair done. Then she no longer fit in the seat to get her hair cut.

Alex: Oh ...

Kate: She wasn't sure if she was bathing. It's actually important that she goes to the hairdresser to get her hair ... it's when she gets her hair washed.

Kate: Calling around to try to find places where they can have a booster seat or something on the ...

Alex: It's great ... these practical, creative solutions, right? And you don't need a physician to help, right?

Kate: Right. Right. It's actually a lot of work calling around.

Alex: Right.

Kate: You really don't need a nurse or a social worker doing that, either.

Eric: Yeah. Going back to the study and the Care Ecosystem, how do you define who is a caregiver?

Eric: I can imagine for a lot of these patients, they have formal and informal caregivers; they have family member in Connecticut who's providing a lot of caregiving, but from a distance. And a formal caregiver here. How did you guys think about the word "caregiver"?

Kate: Sure. Well, for the trial, we wanted to identify one caregiver who was going to stay with us for the whole trial. It was really important for the measurement to have the same caregiver answering the questions at each survey time point.

Kate: But in reality, patients often have a team of caregivers. Or at least we hope they do. In fact, if they don't, we often try to help them get a team of caregivers.

Eric: So that's locked, right?

Kate: Yeah. But yeah, we just looked for someone who identified as a primary caregiver, and they didn't have to live with the patient. Some of them lived in other states. Nearly all were a family member. Most were spouses, followed by daughters.

Alex: We were talking about this a little bit beforehand. We were kind of joking, but sad, but true. That with results like this, if this were a drug, some pharmaceutical company would have picked it up and making billions of dollars off of it. But it's not a drug.

Alex: I guess the next question is, you have impressive results. There have been other studies of dementia care; you mentioned some in your discussion, based out of UCLA, based out of other places that have also had encouraging findings.

Alex: Yours is distinct from those, but in some there are a number of potential interventions that could be done that are non-pharmacological. And have promising results for people with dementia and their caregivers.

Alex: What can we do to change the system, or what hope is there for these interventions being implemented in this country?

Kate: This gap between practice and research is one of the biggest challenges. It's one that we have thought about from designing this intervention.

Kate: Everything that we did here at the Care Ecosystem was with an eye towards scale, in terms of how the intervention was designed, that it could work from hubs, extending the reach of specialists.

Kate: For example, making it phone based. We were always thinking about scale. We were really influenced by people like Laura Gitlin, who write about the science practice gap.

Kate: So, what can we do now? Well, one thing we're doing is trying to make the process for setting up the Care Ecosystem as easy as possible for health systems. I mean, it's never easy. But as easy as possible.

Kate: So that's why our trainings are online, the toolkit ... If you go to our website, it's a one-stop shop for everything Care Ecosystem.

Kate: We want to give them the tools. We also published a paper on the costs of setting it up, so health systems can plan for those costs.

Kate: The startup costs; there's always startup costs in setting up a new program. Unfortunately, Medicare doesn't usually pay those costs. We find health systems need to get some philanthropy or a grant to get a program like this off the ground.

Kate: But then we provide a lot of guidance on potential billing mechanisms or other ways to sustain the program.

Eric: I loved your toolkit. I like reading it! How do I talk to my stakeholders about thinking about this? What kind of questions would they have?

Eric: It's a great toolkit for starting this up. I think that's what often is missing in most of these interventions. It's, "Oh, look at this great thing that we did."

Eric: And then, it stops at the publication and nothing after that. You don't see it in many other places. And this, it's there. It's built in to the study, too. It's impressive.

Kate: For us, the metric of success is not that we published this paper; the metric of success will be that health systems are delivering this care to families.

Eric: And getting on the GeriPal PodCast.

Kate: This is- Yeah. Right.

Eric: That's your admission?

Kate: We can go home now [laughing].

Eric: Right. Right.

Kate: We're done. You can go back to dancing, Sara.

Alex: That's right. Are there health systems who are interested or who are starting to participate?

Kate: Yeah, I think because we've put these materials online, and even before this paper was published, health systems were reaching out to us. We are always so excited to take those phone calls and talk to them about their, as they're considering setting up this type of program.

Kate: Three different health systems decided to go forward with it around the same time; around June of 2018. It was pretty cool; they all, at the same time. Ochsner in Louisiana, HealthPartners in Minnesota, and University of Colorado at Denver as well.

Kate: So we've been working together as a team; we have monthly calls, all four of our groups together, to talk about the challenges that we're all facing and how they're adapting the program for their health system; how they're approaching sustainability so that we can learn from each other.

Kate: We're actually studying the process of the implementation, and offering our help as much as we can to these health systems to maximize the likelihood of success.

Kate: We hope, now that this paper's out, we'll get some more phone calls from other health systems. We can't wait for those phone calls. So please, call us.

Sarah: Yeah.

Eric: We'll have the link to your website. Contact information is on the website too, if they're interested in learning more about Care Ecosystem and starting up in their healthcare system.

Sarah: Yeah.

Kate: Please. Send us an email. Help us build a Care Ecosystem as a national model of dementia care.

Alex: Yes, it should be. It should be. It should be our care ecosystem.

Alex: Oh. Last question from me. Why Care Ecosystem? Why that term?

Sarah: Someone on the team before I came along came up with it. But I mean, it's brilliant.

Alex: I mean, I was kidding with Eric beforehand, he was, because they plant trees as part of [laughing] ... That's not it.

Kate: Yeah, I think it refers to the multidisciplinary team nature that's needed to take care of dementia; that we're involving the family, that we're involving the navigator, the existing providers, and our multidisciplinary dementia specialist team; that we all need to work together and address whatever the needs are to help the patient.

Eric: I love that you included community providers, like Alzheimer's Association. Amazing resource for individuals out there, and so underutilized.

Kate: Yes.

Alex: I think this really illustrates the ecosystem nature of dementia care; in that if you provide robust support for caregivers, which is to me one of the major components of this intervention, and why it was successful; then you will impact not only the caregiver, but also most important, also importantly, the person with dementia. So that in an ecosystem, any given piece, if it's not supported, it affects the whole system. I think that's absolutely true here.

Eric: Great. With that, I think I want to send you a big, big thank you for joining us today on this podcast. But maybe before we say goodbye, we could have a little bit more of-

Kate: Bob Dylan.

Eric: ... Bob Dylan.

Alex: A little more Bob Dylan. (singing).

Kate: (singing).

Sarah: (singing).

Eric: (singing).

Alex: He's still stuck on Queen.

Eric: (singing).

Sarah: I'm going to have that song in my head all day.

Alex: Oh, no, that's the other one.

Eric: That's Alphaville.

Alex: Alphaville.

Eric: Alphaville.

Alex: Yeah yeah.

Eric: Yeah. For all those folks who grew up the '80s, you're welcome.

Eric: And with that, I want to thank, big thank you to our listeners for joining us today. And both of you for joining and giving us this great tour of Care Ecosystem.

Alex: Thank you, Kate. Thank you, Sara.

Kate: Thank you, GeriPal!

Eric: Yay! Thanks everyone.

Alex: Bye.

Sarah: Bye.



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