It’s Time for Comprehensive Dementia Care: Podcast with Lee Jennings and Chris Callahan

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, we have two guests with us today, joining on Zoom.

Alex: We have two guest with us today. We have Lee Jennings, who is Division Chief of Geriatrics at the University of Oklahoma Health Sciences Center, and she is a geriatrician and a health services researcher and she practices primary care geriatrics. Welcome to the GeriPal Podcast, Lee.

Lee: Thanks for having me.

Alex: And I should also mention, Lee is a former UCSFer. And we have Chris Callahan, who is Chief of Research and Development at Eskenazi Health, which is a public health hospital, and is also Professor of Medicine at Indiana University. Welcome to the GeriPal Podcast, Chris.

Chris: Thanks for having me. I have no connection with San Francisco, but I have seen your bridge. [laughter]

Eric: Well, we’re going to be talking about comprehensive dementia care. Both of you had recent publications in the Journal of American Geriatrics Society, JAGS. We’d love to talk about both articles. But before we do, do either of you have a song request for Alex?

Chris: Lee’s in Oklahoma, Alex, so it would be great to hear some Woody Guthrie.

Alex: Woody Guthrie. Here’s a little This Land is Your Land. (singing)

Eric: Did you add a little twang to that?

Lee: That’s the right way to do it.

Chris: Well done, Alex.

Alex: Thank you. Chris is a master writer of parodies, by the way. He wrote this terrific parody for the retirement of Robin Barr to the tune of that Shallow song from A Star is Born. It was a lot of fun. But that’s a non sequitur. We should get to the topic of today, comprehensive dementia care. What is comprehensive dementia care and why do we need it? Lee, do you want to start us off?

Lee: Sure. In a nutshell, I think comprehensive dementia care is care that is longitudinal, it’s care that is dyadic, meaning that it’s caring for the individual with cognitive impairment or dementia and also the family caregiver. It is care that’s comprehensive, meaning that you’re addressing medical, behavioral, social aspects of the disease. And it’s care that really isn’t just within the healthcare system, but that reaches into the community because that’s where people spend most of their time is at home. So care that addresses how the individual lives outside of just that doctor’s visit. There’s probably more to it than that. That’s a start.

Chris: That’s wonderful. I like how Dr. Jennings started with longitudinal. I like to think of it as a journey of care. It’s a journey for every person living with dementia and their family. I think when we do it well, we walk along that journey with them.

Eric: And when we talk about comprehensive, sorry I was going to say cancer care, dementia care, how important is it that it’s focused on the disease, dementia versus, like you can have comprehensive cancer care, comprehensive heart failure care. Or should we be thinking about this as comprehensive person care?

Chris: I think this has been true of a lot of our collaborative care programs, because as you mention Eric there’s these programs for many different chronic conditions. Dementia has been a bit of a challenge for all of us because like Lee mentioned, it’s dyadic in nature and so much of that journey is taking place outside of the health care setting. It was our first order of business to be able to develop comprehensive care for this particular illness, but one of the things that Lee points out in her article is, this unmet challenge that we have with also helping that person manage their comorbidities.

Lee: Dementia affects everything else. How do you manage your heart failure if you have cognitive impairment and you can’t remember to take your medications? We think about chronic disease management for many other conditions as self management. I’m going to teach you about diabetes and you’re going to self manage your condition and that will help keep you out of hospital or whatever.

Lee: But in dementia, that approach doesn’t work necessarily in the same way because it is really about teaching a care giver or a family member or a friend to help that individual self manage. In thinking about where the individual maintains that autonomy and ability to care for themselves, where they’re beginning to need more support. Not just support for the individual, but support for the family member who may be an older spouse, who may have their own health conditions. I think we really have to think more comprehensively about what care looks like when we’re talking about people living with cognitive impairment and thinking through how it impacts every other aspect of their care.

Eric: Lee, can you give me example, let’s go to the UCLA program and specifically we’ll talk a little bit about your paper with Dave Rubin, but before we do that can you describe what that program actually looks like? It’s been one of the long lasting programs out there in comprehensive dementia care.

Lee: Yeah. I have to give a shout out to Chris on the program because that program that I helped evaluate at UCLA is really based on a program that originally came out of University of Indiana. So, the UCLA program is a partnership with a dementia care specialist who is a nurse practitioner with primary care. So these patients are in the UCLA health system, they’re referred by primary care. It’s really a co-management model. The idea is, there’s back and forth between primary care and the dementia care program about the patient’s needs and about interventions to help the patient.

Lee: It’s also very actively partnered with community organizations. It really is designed to reach into the community, they were partnered with Alzheimer’s Association, adult day health programs, Jewish Family Services, a myriad. It’s by design because again, most of the care people need is not at the doctor’s. It’s at home. The model also really strives to address medical aspects of care, social aspects of care, behavioral aspects of care. Really systematically. Again, it’s longitudinal. It’s not just a one time consultation program, but this is a program that people really enter into and stay into until death.

Alex: My question is, and this leads into your paper as well and what you did in this specific paper, why haven’t comprehensive dementia care programs been adopted widely? Why is it that Eric, slip of the tongue, says comprehensive cancer care? Because we’ve heard that phrase over and over and over, but we haven’t heard comprehensive dementia care because it hasn’t had the same sort of uptake in this country.

Chris: Well, one of the things that Lee just described are all of these interventions that some people might place outside of traditional medical care. Some people might place those interventions in the responsibility of the family. Some might say, “Those are wonderful interventions, but that’s not part of the statutory authority of someone like Medicare.” A lot of the interventions that we’re talking about within the comprehensive umbrella, they’re not pills and they’re not procedures and they’re not diagnostic tests. They have a lot to do with education and support and really helping that family keep achieving a quality of life.

Chris: We have reasonable arguments as a society about which of those interventions ought to be under a medical benefit versus what are part of a family or a community responsibility. I think this is one of the unique challenges of dementia perhaps as compared to cancer or chronic kidney disease.

Lee: A lot of the services that these comprehensive dementia care programs provide are not necessarily in face to face billable Medicare visits. So, the traditional, for large part our country still operates under fee for service Medicare. We have some value based programs, but in large part fee for service Medicare. We asked our dementia care specialists, “How much of your time is spent in the billable visit?” They said, “Less than 25%.” So 75% of what they’re doing is not something that they can put a code down and bill Medicare for.

Lee: So these programs, the payment model for them really doesn’t work well in our traditional structure. It’s going to require thinking outside the box about how we pay for these things and the benefits accrued. So, if you reduced acute care hospitalizations and you save Medicare money, but the health system incurs the cost, or the physician group incurs the cost of the program, those are not aligned well. So it creates a problem where you have somebody bearing the cost and somebody else reaping the benefit. We’ve got to figure out how to remedy that.

Eric: Lee can you describe a little bit about what, I’m going to spend some time on particular [inaudible 00:11:35], what was the benefit of, in the multiple papers published including your last one in JAGS, what are some of the benefits that you’re seeing with your program in particular?

Lee: I’ll talk a little bit about the last paper in JAGS and then I want to say the same thing about the body of work. In our last paper in JAGS, we looked at acute care utilization, we looked at end of life care, particularly hospice use and we looked at time to long term care nursing home admission. What we found was, as compared to people with a diagnosis of dementia within our health system, but not in our program, we found that we were able to reduce ED visits and we were able to reduce hospital length of stay and we were able to have more people enrolled in hospice, use hospice in the last six months of life and then, also replicated our findings from a prior study that showed that the program delayed time to admission to long term care.

Lee: Those are outcomes that people care about. Staying out of the hospital. Being at home more. Getting better end of life care. Dying with dignity. Those are things that are important to patients. If you look at the whole body of work, and we’re one of several different programs of similar models. They’ve actually achieved a triple aim if you look at it, right? They’ve improved care. They’ve improved quality of care. They’ve improved outcomes like depression and behavioral symptoms and caregiver strain. Now, we’re showing decrease in acute care utilization and cost. We’ve achieved a triple aim. Yet there’s still this scalability and this implementation barrier that we’re trying to overcome to make these programs more widely available.

Chris: I think this is somewhat of, we’ve begun to chase our tail a little bit because if you look at Lee’s team’s work and we see each one of these as the next barrier, does it work? We think we have evidence that it work and then does it work in efficient manner? Often defined by saving resources or reducing cost. We say, “Yes it does that.” Then we come up against a couple of additional barriers. One of which Lee already alluded to and that’s, we’re saving money for Medicare. We’re not necessarily saving money for any given health system or any given family. The cost to a family for some of these interventions in this overall bundle of care are substantial. Some of Amy Kelly’s work for example has shown that it’s even greater than you see with other chronic conditions like congestive heart failure, these out of pocket expenses.

Chris: We also have other barriers. One of them is workforce, which is a deep seeded issue in geriatric medicine, but we’re also talking about a workforce for advanced practice nurses and social workers. I would just highlight one other thing about Lee’s study and that is, another workforce problem. Where she has a team that’s able to match claims data and their patient care data with Medicare clients. This is really hard work. There’s not very many places in the country that do this well and particularly do it in a way that has such practical ramifications. One of the things that I think all of these articles point to and the other article that’s in this particular journal points to, is that if we could align incentives and if we had funding for this bundle of care, we might draw people into the workforce and we might stimulate innovation in how to get these programs to work even more efficiently or line up with community and patient goals.

Eric: One of the challenges I could see also is when we’re talking about this bundle of care, I’m also getting a sense that the various, at different sites they’re doing different bundles. For example, we had not too long ago a podcast on the care ecosystem. Again, showing great outcomes as far as improved quality of life for those with dementia, reduced ED visits, reduced caregiver depression and burden. But a different model than what Lee was talking about. Lee said hers was based on your work too. How should we think about this given that it’s not one standardized pill?

Chris: Well, one of the things that the other article that Lee was involved in, in this month of JAGS does is try to boil down a little bit what the essential components are. You heard that from Dr. Jennings at the beginning, what some of these essential components are. I always think though, if you were explaining this to a lay person or your own mother, how much they would look at this and say, “Well that’s just common sense.” Why would you have to tell someone that having made a diagnosis, you should reveal it to the family. And having told them about this very difficult diagnosis, you should walk alongside them. There are a lot of them that seem fairly common sense. But when you boil down the active ingredients the way Lee did, these programs begin to look very similar.

Lee: I agree with that. I think that the other to remember is, not every health care system is the same. So it’s okay for us to have some variety in how these things are implemented in different places. Sort of like you have the pillars of the intervention, but the shape of that pillar, the design on it might be slightly different, but the core of it is the same. I think those core components are across all these different interventions, but the individual implementing it or the way that it reaches into the community versus the health care system may be slightly different. I think that’s okay because again, the University of Oklahoma where I am now, looks very different then UCLA where I was when I began this work. We need the framework that’s adaptable enough to be able to be applied in the different systems to make this care more scalable because we’re really not meeting the needs of patients and families widely right now.

Alex: We are not. We are so not meeting the needs of patients with dementia and their families. One of the things I loved about your editorial Chris, I should say that you co-wrote with Kathleen Enrow who we had on a podcast previously talked a little bit about optimistic, but one of the things I loved about it was the outrage at the beginning. Given the evidence that comprehensive dementia care improves outcomes for persons with dementia and their caregivers, add cost savings to Medicare, why isn’t this care as widely available as MRIs? Or total knee arthroplasty? Or hemodialysis? What on earth, what kind of evidence do we need? We have mountains and mountains of evidence so far. Why is this such an issue and why can’t we move forward with payment reform to get comprehensive dementia care in place? What are your senses, the barriers that are in place to making this happen? What’s it going to take? We have so much evidence. Do we really need more evidence?

Chris: I think one of the fun things about this intervention that we mentioned is, a different group picks it up in a different setting with a different group of patients and they adapt it, and it is adaptable. But even in a single organization, doesn’t matter where you are. If you’re at an academic medical center, a community health center, urban, rural. Each dyad the patient living with dementia and their care partner is unique. You have to tailor this intervention to that unique dyad. That begins to present some problems for payers. In terms of understanding what competencies should I expect in a purveyor of this particular intervention? We don’t let people just open up a hemodialysis unit in their garage. Maybe one day that will possible. You expect certain rules and regulations around competencies.

Chris: So, there is a notion that a payer like Medicare needs to understand what are you doing? How do I know if it’s quality? How do I know if you actually did it? As we were saying earlier, some of these things that we’re offering as active ingredients, and important ingredients, they’re not less important just because they’re not part of this medical model. They’re not part currently of Medicare statutory authority. Things like, we might be helping through a community service agency, a family remodel their bathroom. Which might be the difference between them going to skilled nursing home or staying in their own home, and by the way, might cost less than a couple of the prescriptions they’re taking on an annual basis. That mismatch is one of the big problems.

Chris: The other is, we also have an issue with the workforce and I won’t repeat that, but if this became widely available and with a benefit that would support it the way we support other intervention, we’d have a boat load of work to do to build our workforce in this country.

Eric: Go ahead Lee.

Lee: I just want to add to that, I also think we need to be thinking outside the box a little bit about workforce. So for example, this concept of a pyramid or a tiered approach. You might need a very intensive health care based nurse practitioner intervention for a subset, but you might do really well with a community health worker based intervention or lay health coach intervention for others. I think we need to think about it as a population and think about, we have to have some interventions that are $10, not $10000 to really make it be scalable. I think thinking about workforce outside of the box and thinking about what Medicare will cover with regard to workforce, community health worker interventions are largely not covered by Medicare to my knowledge. That would be an example of a payment reform that might make some of these home and community based interventions more scalable or more available to people.

Eric: Yeah, again going back to the care ecosystem, which we had a previous podcast on, lay health navigators were the main ones doing the intervention and they were all top through this study and I love about it because you could actually bring up their teaching slides, how they taught the health navigators all free to use, which is, I think, amazing. That pyramid shrinks. I guess one question is, on the top of that pyramid, going back to my misnomer in the beginning calling it a comprehensive cancer care, I think part of the reason is, way back in the 70s, you started having comprehensive cancer centers and you can actually pull up from the National Cancer Institute where are these national cancer centers and their specific requirements around [inaudible 00:24:48] Medicare. Do we need the same thing in dementia care where we have comprehensive dementia centers that are held to these higher standards that do research? Or do we have them already?

Chris: There’s some that approach that Eric. I think they’re put together with duct tape and baling wire, which is a Midwest metaphor.

Eric: It’s great, I love it. I love it. Makes the part of me that grew up in Michigan very happy.

Chris: Lee knows what it means, but one of the reasons that its so hard to sustain these over a decade is because you have to patch them together. The NIA impact collaboratory is beginning to build that infrastructure for pragmatic trials. Not necessarily comprehensive dementia care services and then, on the research side, of course you have the Alzheimer’s disease centers. But, you don’t have the same kind of fuel for comprehensive care in terms of funding that you have for cancer. But there is a debate there, if that’s the way that we want to go. Lee mentioned we need to learn to do stuff for a dime instead of $100 and how many of these broken out comprehensive ex-care centers do we have when the patients and their caregivers just see a person?

Chris: I think this is where the field is wondering, is there a way to sew this more neatly in with primary care and to work more collaboratively with primary care in some of our other specialty colleagues? Or do we just need to move it all within a comprehensive dementia care network? I think that’s an open question, but as part of what we’re saying, we need some support to innovate along those ways. Even now though, it’s pretty sad if somebody has to drive from rural Nebraska a couple hundred miles to get to the closest comprehensive whatever center. Everybody would like to get care close to their home.

Lee: It strikes me that… I’m thinking about some of my patients in primary care. If they had to go to their comprehensive cancer care clinic and their comprehensive memory care clinic and their comprehensive heart failure clinic, right? They’re exhausted. They’re burdened. So, I do think that the idea of how we move forward with, what is comprehensive care and how we pay for it, is probably broader than just dementia. Dementia is probably a prototypical illness, but it could be applied more broadly to Geriatric care, to care of people with chronic conditions. Because primary care doctors, I’m sure other clinicians would love the opportunity to think about, how do I provide comprehensive care to my population of patients? They face those same barriers with payment and being able to have, if you get paid to titrate their medication only if the patient is in front of you, then that creates an incentive not to do phone management.

Lee: We have an opportunity now with COVID and the resurgence of telemedicine, I know where I am we see a lot more of that, we’ve been more efficacious I think, in trying to reach some of our home bound patients and our rural dwelling patients. So, I would love to see this spur how we think about delivery of care in a different way and what we reward in incentivize with payments.

Eric: I love that. We’ve had several episodes about the challenges as well of telemedicine. We have a forthcoming podcast about how do you do a cognitive assessment over telemedicine? Incredibly relevant to today’s topic. Here’s a question for you. Our listeners, we get about 5000 downloads per podcast now, thank you listeners, appreciate it. It’s double the size of an AGS plenary or a palliative care plenary or a GSA plenary, and our audience is overwhelmingly clinical. So these are clinicians. On the ground clinicians caring for older adults, caring for people with serious illness. What are the take aways? Enormous part of what you’re talking about here is health policy implications. Are there some takeaways for practicing clinicians, on the ground now today, and what they can do either as clinicians one, or two, as people who can advocate for health policy change on a national stage? What’s it going to take to get, to move the levers, to actually create comprehensive? Is this something that Congress needs to do? Or is this something that Medicare could do by itself?

Eric: So first, clinicians themselves, what can they do based on this? Then second, what can do they do as citizens who are interested in advocating for change?

Chris: I think one thing that we’d really like clinicians to start communicating to their patients and their other stakeholders is that there are things that work. Stop saying nothing works. Stop saying things like, “This is a terminal illness.” Stop saying, “Let’s not diagnose it because there’s nothing we can do about it.” That’s just demonstrably wrong now. It is a journey that is going to change over time for this patient and their family and there’s a lot you can do to help them along the journey. It does not have to be defined by a prescription pad.

Chris: If there were one thing I was going to tell somebody who says that I have zero resources, there’s no way I can even do one thing, it would be, then take the time to find out what your community resources are. At least send people to the places that are set up to help them and your diagnosis and your credibility as a provider will open doors to them for these community services.

Eric: I love that too because it’s, one significantly under-utilized community resource is the Alzheimer’s Association, which really I didn’t really start thinking about until both during and after geriatrics fellowship. Lee were you going to say something?

Lee: Yeah. I was just going to add to what Chris said. I think as a clinician you can make a diagnosis and that is really helpful because it colors the rest of the care of the patient. It also then, and the second piece of that is just what Chris said, is refer to community resources. Alzheimer’s Association is probably the most widely available resource across our country and then I think as citizens and both as clinicians as citizens, as patients and families as citizens, is demand this care. We all have smart phones. Why do we have smart phones? Because it’s a relative advantage and we’ve demanded it. We use it. I think there’s a similar concept to the dissemination of a new innovation in this care model. The consumer demand hopefully will help drive some of this. I think, to give credit to Alzheimer’s Association, to Hartford Foundation, to AGS for beginning to increase the awareness about the success of models like this, JAGS, this podcast. I think there’s a real need to let people know about this model.

Lee: Why do people go to the NCI designated cancer centers? Because they know they exist and they want the best cancer care. Why wouldn’t you want the best dementia care? I think that’s part of driving this forward is that demand for these models. Why do we have laparoscopic surgery? Because people want it. You have better outcomes. It’s less invasive. There’s clear relative advantage for this. There’s clearly something we can do for people living with dementia and we should be demanding that availability to drive it.

Eric: And if you had a magic wand, you can make any policy change happen, what specific policy, you have one. The magic wand is about to run out, you can make one policy change. What would it be?

Chris: I would take this bundle of services and I would put a price tag on it that Medicare was willing to pay with all the appropriate regulatory controls in place, that wasn’t just enough to keep an organization from losing their shirt, but was enough for them to thrive and to innovate.

Eric: Lee, that magic wand is on it’s last string.

Lee: I think similarly some kind of per member, per month payment that would make this accessible for people to be able to use and make it reasonable for health care systems to implement.

Eric: Can I ask how much, for example, the UCLA program, how much does that cost per participant? Do you know?

Lee: I can know, hold on.

Alex: It’s also a tough question to ask, because it’s cost to who? Cost to the family?

Eric: Cost to the health center, who is running the program?

Alex: So do you weigh in the health savings that Lee has demonstrated from…

Eric: No, no. Just the overall cost of the program. Not the cost of benefit. For example, amyloid PET scans, what do they cost? A $1000 per participant, 1000 to 2000. A lot of people advocating for them.

Alex: Although Chris just said, that we shouldn’t say we shouldn’t diagnose it because there’s nothing we can do about it. We know we can do something about it. I know it’s somewhat different because amyloid PET scans and other such tests are more about…

Chris: I am not advocating for amyloid PET scans. [laughter]

Alex: Okay.

Chris: They can make a diagnosis a lot less expensive than that. I do think you’ll be surprised, many people are surprised what it would take for a per member, per month. Yes, you can pay for it. You get rid of a couple of medications. But we’re talking about per member, per month in the couple hundred of dollar range. You can provide these services. So, over a period of a year, you’re talking three to $5000 per beneficiary. Especially if you add enough for this notion that you do have with other conditions, like heart disease and cancer, where you can innovate on some of the margin the organization can make. It would draw people into the workforce that way as well.

Lee: So, $300 per patient per quarter. So, $1200 and we saved about $2400 per patient per year. The [cross talk 00:37:41], it was cost neutral in that study once you accounted for the costs. But the point estimate was that you saved about $300 a patient.

Eric: Although, does that include… One of the points Chris makes is that these programs have been supplemented by research funding, NIH, CMMI etc, community services, family out of pocket costs. My question is, and Chris you talked about this in your article, I wrote a blog post early on about what if palliative care doesn’t save money? Does that mean we shouldn’t do it? What if comprehensive dementia care doesn’t actually save money? If you were to add up all those ancillary costs. Does that mean we shouldn’t do it?

Chris: This has always been a holy grail for depression care over 50 years, if not 100 years, that the argument for it was that it was going to save money. There are a lot of things that we do that’s not their metric. Many of these expensive interventions, whether it’s bypass surgery or hemodialysis, nobody is looking to see do they save the country money? Health care itself is an expensive endeavor. I think one of the things that we’ve heard ourselves arguing a little bit for is this notion that if we finally find it, pick your condition, if we show that we saved money, by gosh, manna would rain down and it doesn’t. That’s part of what we’re talking about. For our own research enterprise and for ourselves as clinician researchers, you just have to recognize that multi-step process that your P value is not going to be the thing that moves the country. It may get, as Lee was saying, it may be that the only thing that moves is advocacy from patients themselves and their families.

Lee: Yeah, I just can’t drink the Kool Aid that everything that is beneficial has to be cheap. Good care may cost money, but at the end of the day, let’s focus on paying for good care not things that don’t matter. Care that’s not helping people. Interventions that aren’t improving health outcomes or quality of care, let’s pay for good care.

Eric: I want to thank both of you for joining us today on this podcast. We will have links to the JAGS articles on our GeriPal webpage. But before we end, maybe we can get a little bit more of This Land is Your Land?

Alex: A little bit more This Land is Your Land, here we go.

Eric: A little bit more twang.

Alex: (singing)

Eric: Lee and Chris, thank you very much for joining us on this podcast.

Alex: Thank you Chris. Thank you Lee.

Lee: Thanks for having us.

Eric: And to all of our listeners, thank you for your continued support for the GeriPal podcast. If you have a second, please share this on either Twitter or Facebook to spread the news about the GeriPal podcast and a big thank you Archstone Foundation for your continued support. Good night everybody.