In this episode we talk with Dr Mia Yang, a practicing physician involved in clinical care, teaching, and clinical research. She is Director of the Wake Forest House Call program and the co-Investigator for the D-CARE study, comparing health system-based dementia care versus community-based dementia care. Mia Yang, Welcome to the Move to Value Podcast.
Thank you. It’s an honor to be here.
Dr. Yang, what is comprehensive Dementia Care and why is it more important now than ever?
Absolutely. So, as many of us already know, the baby boomers are getting older and as people age there are more people who have cognitive impairment and dementia is where people whose cognitive impairment is making them have impairments in their daily function. So, as we get into the next couple of decades, we’re going to see a tremendous increase in the millions of Americans who have some sort of cognitive impairment. And comprehensive dementia care means that it’s not just talking about the medical aspect of treating dementia, we’re not talking about just prescribing pills, which there are very few, but a very holistic treatment including caregiver support, education, discussing legal and other related topics that our patients go through, as well as kind of a wraparound service that helps these patients who are living with dementia and their families go through this journey.
Dementia obviously has a pretty negative connotation when people hear about it. They think they’re crazy or you know that you’re going to go live in a rest home or something like that. But it really just means that someone’s memory problems is affecting their daily function. It is an umbrella term, and the word dementia is used oftentimes interchangeably with Alzheimer’s disease or Alzheimer’s dementia, but there are many different types of dementia and Alzheimer’s is the most common type but it’s not the only type. And there are pre-dementia conditions called mild cognitive impairment where the person might notice some subjective signs of memory loss and objectively a memory testing, we don’t think this is just what happens as you get older. Compared to other people of similar age and education, this person scores very poorly and those people are called mild cognitive impairment because they’re still able to function independently, they’re just noticing some subtle issues that are perhaps to beginning of dementia.
Well tell me how a cognitive impairment or dementia diagnosis impacts the overall health of the patient and care team?
So, dementia or cognitive impairment is not just one of the many chronic medical issues our patients deal with it. It really affects the self-management of all chronic illnesses. So, if you think of someone who has diabetes and they have memory problems, how are they going to remember to take their medicines accurately? Are they going to be able to draw up their insulin? Are they forgetting how to cook so they eat poorly or maybe they have forgotten that they have not eaten and are losing a lot of weight or gaining a lot of weight from forgetting that they have already eaten. So, that’s just an example of how our cognition is really central to the overall health of the person.
What is the current landscape like in cognitive impairment AKA dementia care?
I think that research in Alzheimer’s disease and related dementias, which we can call the general term dementia or ADRD is what the National Institute of health used to call all the related dementias to Alzheimer’s. A lot of the research have been very focused on the biological pathways of the disease and of course in ways to prevent the development of cognitive impairment, but there hasn’t been as much funding until recently in the care of patients who already have the disease. Most of the drug trials have moved earlier and earlier on in the disease course, where there might be treating people who have perfectly normal memory but are having biomarkers that suggest that they are perhaps on the path of developing dementia. While all of that research is very important, it really doesn’t address the people who have the problem now and there aren’t that many clinical trials looking at the group who have the disease now and particularly in the later stages of the disease. Usually in a moderate stage of dementia is when all the challenging behaviors that are commonly associated with dementia come about and most of the clinical trials are not looking at that. Although I do think there is a change in the landscape to really help the caregivers take care of the person with dementia better. A lot of the trials that we have that have been published are relatively small, so a couple hundred people at most oftentimes in only one institution. But the dementia study, or the D-CARE study, the dementia care study, is the largest dementia care clinical trial going on so far. This is where we recruited over 2100 dyads, so they’re person living with the disease plus a family or friend caregiver.
Wow. Can you tell us more about the D-care study and the outcomes you have been seeing?
So, the D-CARE study is funded by PCORI and NIA. It’s a comparative effectiveness study and it’s what’s called a pragmatic study, meaning it’s right in the intersection between what we traditionally think of clinical trials versus clinical care. So, there are aspects of the study where we bill Medicare for using a billing code for cognitive evaluation and care planning and there are aspects of the trial that are paid for by the grants. And that is a very interesting type of clinical trial that not even many researchers know about because it’s really at the intersection of comparing the effectiveness of two things that already have evidence that they have efficacy. And in this trial, we know that the two arms are being compared are already shown in their separate studies that have been published over the past 10 years that they are beneficial at helping caregivers at relieving their burden plus possibly other healthcare outcomes for the person living with the disease. But D-CARE is really comparing a health system-based dementia care model with the community-based dementia care model to see which one is better at reducing caregiver burden and the behaviors that are associated with dementia and the person living with the disease.
There is going to be a comparison of cost as well because this is going to relate to Medicare policy. On the health system-based arm, the intervention is delivered mainly by advanced practice practitioners, so nurse practitioners, or physician assistants, who have gone through specific training related to dementia care and they’re supervised by a clinician, like me, partnering with their primary care physician. It’s a model that borrows from psychiatry and the collaborative care model where you bring in the mental healthcare and collaborate with primary care. In this case, we bring in the dementia care to collaborate with their primary care. The community-based arm it’s much more separate from the healthcare system. These are usually nonprofit organizations in the specific communities that are doing aging related work. So, for example, Alzheimer’s Association chapters or area agencies on aging. These are federally funded nonprofits or in our community, senior services was one of our partners where a social worker, who is embedded and an employee of that nonprofit, helps these dyads go through the journey of dementia for the 18 month period of the trial and provide telephonic support over that period of time.
Can you tell me how this work has impacted the Value-based Care triple aim of improved patient experience, better quality of care, and lower cost?
Absolutely. I think we’re going to talk more specifically about the health system-based model because we are talking within the health system of value-based care. So, putting aside the community-based model for now. The health system-based model, I think, really does achieve the triple aim of improve patient experience. We have a life person who understands the comprehensive reach and needs of people going through the dementia journey and are proactively reaching out to them and proactively trying to prevent hospitalizations or other deterioration of their behaviors. And this is much more than again going to see a neurologist and getting two prescriptions. Nothing against neurologists but oftentimes we just don’t have the time or the skills in our current healthcare system to really fully address all of the needs that these people have. And things for example like driving. Oftentimes primary care doctors don’t know what to do about that. You don’t want to tell someone they can’t drive anymore because they’ll never come back and see you. And I think we have seen through this particular trial and through previous research that overwhelmingly patients and their care partners really like this program. They feel like people are listening to them, that they’re not just aimlessly wandering through the healthcare system trying to find what they need. They have a person that they could call when something comes up. This person happens to be able to prescribe medications if necessary. But that’s really a relatively small part of the intervention. A lot of it is education for the care partner, connecting to community resources.
In terms of better health care outcomes because the study is still ongoing, I don’t have those results. But looking at the original papers that were published from this model, which was developed at UCLA, they called it the Alzheimer’s disease care model, and they have seen that people who are in getting this intervention have fewer hospitalizations and emergency room visits compared to people who are just waiting to be enrolled on a wait list control. This program is very significantly reducing the chance of long-term care. Enrollment, meaning that you know the family are just overwhelmed and they say we can’t take care of this person anymore at home they need to move into a long term care a nursing home permanently, the studies have shown that this model can reduce that long term care enrollment by 40%. Which is significant when you have a value-based model that perhaps gets Medicaid funding, because Medicaid is really what funds long-term care services in our country.
And in terms of the lower cost, I think a lot of that relates to the fewer hospitalizations and emergency room visits. That people are able to access someone who can address their needs rather than taking this person who has challenging behaviors to the emergency room. Oftentimes that’s really the worst place for these patients to go to. It’s a very disorienting place and people actually get worse oftentimes by going into the hospital rather than get better because there are very susceptible to get delirium on top of dementia, which is a condition where they get acutely agitated. They may be hallucinating, could be from a multitude of factors whether it’s infection or just from sensory deprivation, you know, not being in their natural environment, not getting any sleep because the hospital is a terrible place to rest, and getting more and more confused. And sometimes, even though we learned that delirium is a temporary condition, oftentimes in people who already have underlying cognitive impairment it becomes a permanent decrease in their cognitive function.
So, I think through what I have mentioned so far, this model is really able to help the person who’s living with the disease, help their family members get them the care that they need, help them stay in their home longer, and reducing the cost. Now the study, the D-CARE study, will wrap up in the summer of 2023 and then data will start coming out after that. So, probably by the summer of 2024 we will have a much more definitive answer as to how much money saves. But we do know that Center for Medicare and Medicaid Innovation is very interested in this model because even some back of the envelope calculations has shown that it could potentially save billions for the healthcare system, for Medicare and Medicaid.
What can a provider do right now to provide the support and best care for a patient, and their family, or care team, to improve outcomes?
I think that’s a great question because we know that there are very few memory specialists like myself in our healthcare system even though we have a great geriatrics department, and we have great collaborators with the neurology. It is still taking months to get in to see us. We are working on the patient flow aspect of this to try to improve the access perhaps even through telemedicine to do some of these evaluations remotely for people who are too far away to come to Winston Salem. But I think outside of the realm of memory specialist, from a primary care perspective, and I’m also a primary care doctor, I understand the challenges. I think setting up the visit before the visit is very important for these particular situations. What usually happens is that the person with dementia or the person with memory loss may not know or acknowledge that they have a problem and it’s someone else who is sending you report, or message, or calling your office saying, “I really need to talk to you about my husband ,or my dad, or my mom, and can we talk you know without that person there.” So that adds a lot of additional time that primary care providers don’t have because, you know, you just don’t have the time to be on the phone with the family member for 40 minutes after having a 40-minute encounter with the person.
So, I think as much as like using your team in the clinic to gather information ahead of time would be ideal. There are some validated measures that we give to our caregivers to answer when they come to clinic that’s available and can be given out either through the patient portal or just on paper and pen. One is kind of asking the caregiver to rate the person’s level function. So, their instrumental activities of daily living and their activities of daily living. Some of these questions are already in the Medicare Wellness Visit and are already populated in your flow sheet. There are two other measures where I think can give you a lot of very helpful information and you don’t necessarily to have to ask all of these questions verbally. You can hand the caregiver, or someone on your team, can hand the caregiver the neuropsychiatric inventory questionnaire or NPIQ. It’s a two-page sheet basically for the caregiver to rate the severity of behaviors related to the person who has cognitive impairment. And these behaviors are things like delusions, or false thinking like someone’s stealing from me even though they just misplaced their bag, hallucinations, depression and anxiety, apathy, problems with sleeping problems with appetite, sleeping too much, sleeping too little, eating too much, eating too little. So, the caregiver can rate how bad these symptoms are and they can also rate how distressing it is for them. So, there may be some dissonance between the severity of the behavior and the distress it causes for the person who is trying to care for them. So, for example, sleep is a really big issue. If the person with dementia is not sleeping and the caregiver is not sleeping either, and that can very quickly transition someone out of the home because the caregiver has to get up the next morning and go to work and do all the things. And that is one thing that primary care doctors, even just by asking that one question, “how are you sleeping?” You know can we, you know, try to give some medications to help you sleep at night so that you’re not sleeping during the day and having that day night reversal.
Dr. Yang, I understand you have additional resources that are publicly available to anyone who would like to learn more about cognitive impairment?
So, I am going to shamelessly plug my own podcast, which is not affiliated with Atrium Health Wake Forest Baptist, but my own personal views, that could be helpful for those who are interested in listening and finding out more about memory diagnoses and some of the new Alzheimer’s drugs that might be coming out on the market and just general geriatric cases that are you know deidentified and could be helpful and in your clinical practice. So, my podcast is called Ask Doctor Mia and it is available on all the major podcast platforms or you can check it out on my website which is just my name miayangmd.com.
Outstanding! We’ll be listening. Dr. Mia Yang, thank you for joining us today on the move to value podcast.
Thank you. It’s been fun!