Good morning, everyone. We'll get started in just about a minute or so. I appreciate you being here. And yeah, we'll get started in just a minute with a couple of announcements and then we'll turn it over to our speaker for today. Okay. Okay. It looks as though we have got the folks at least who are in the waiting room here into the room so we're going to get started. Thanks so much again for joining us for the second of our two part webinar series this one entitled dementia care and management. I'm sorry. I serve as the executive director of HM DCB and really excited that you're with us today. Before we turn it over to the speakers, I would like to give a few remarks to kick us off as usually happens on these webinars. First, a huge thank you to our sponsor for our 2023 webinar series gentiva. They've consistently sponsored the webinar series we really appreciate their efforts and continued support of these sessions. So if any of your companies are interested in doing so for the remaining sessions throughout the, the year, please let us know by reaching out to Gina on our staff Gina Parisi G Parisi at HM DCB.org. So our next webinar is going to take place in July. That is going to be on the focus of substance use disorder and opioids and hospice. That will open up the registration for that will open up soon. So please visit our website to learn more and to register for that in the coming week or so. Our next coffee chat is going to be taking place on June 21 2023 at 1pm Central Time maybe we should call it a iced coffee chat as opposed to the hot coffee chat that we usually have in the mornings but anyway, 1pm Central Time on June 21. As you can also see we are going to we're kind of supporting a three part webinar clinic that is going to address some regulatory knowledge gaps from our friends at whether be resources, you can as a certificate of HM DCB get a 10% discount code. Again, by emailing Gina at the email address on the screen there. And then we're really excited about the application window for our continuing certification program, which opens on June 6. So if your credential expires in 2023 or 2024, you're eligible to apply we'd encourage you to take a look at the website to learn more about the kind of two options that are that there are this year. For those who are 2023 and 2024 certificates to recertify we are changing our continuing certification program as you are likely aware from some communication that we've done recently. So if you are expiring in 2023 or 2024 we encourage you to take a look at the website. As you go to do your renewal process so again that opens on June 6, and we're excited to have that launch soon. So, with all that being said, now excited to turn it over to our presenter for today. Dr. Albert riddle for our session, again titled dementia care and management, looking forward to the presentation Dr it'll take it away. Thank you. Thank you. Thank you everyone for joining me today we're going to be speaking about the medical care and management of patients on hospice within stage dementia. Myself and Peter fish who hopefully will be joining us in a few minutes are both with Hudson Valley hospice we're an organization that services the mid Hudson region of New York State. We also have connections with medical health choices which is a palliative care service. And we are very excited soon to be opening a 14 bed inpatient unit. So if we can go to the next slide we're going to start off today's discussion talking about ICD 10 coding in patients on hospice with dementia. There's been a lot of questions and confusion actually about appropriate codes that can be used so I just want to go into this in some detail to start us off if we can go to the next slide. So we can see that Medicare policy had a significant change in 2014 regarding what principal diagnosis codes could be used to support, having a patient on hospice. And it started with having changes to allowing codes for debility malaise fatigue and adult failure to thrive, to be used, and started to get into this whole aspect of what are appropriate codes in terms of a condition that is actually a starting point for the diagnosis process that led to cognitive change versus a code that applied to something that might be looked at as more of a manifestation code. And unfortunately, dementia was looked at as more of a manifestation code rather than something that could principally be the cause of the cognitive and functional decline that we see in these patients so the manifestation codes bottom line cannot be used. So if we go to the next slide. We can see how we can start to go about deciding if something is a manifestation code that we should not use as the principal diagnosis and we really start off by asking ourselves three questions. The first is, does the condition that we're coding for have an underlying ideology. If it does, we should avoid that as the principal code. Second, does the ICD 10 code book state code first with that condition. Third is in disease classed elsewhere. Is that something that is in the code title. So if you answer yes to any or all of those questions, it now speaks to this condition you're looking at being a manifestation code that cannot be used. We see further it says in disease classified elsewhere codes are secondary codes. The secondary codes are never permitted to be used as the first listed or principal diagnosis code. So let's look at this a little further. If we look at the next slide. We see a large number of hospice codes that could be considered, but unfortunately, none of these would be considered valid as of October 1 of 2014, and you see a large number of them talk to dementia. We'll speak about how to code specifically for vascular dementia in a few minutes. And then there are some that include some psychiatric references, psychotic disorder, catatonic state, personality change, and the like. None of these would be acceptable as principal codes. So the next slide. Before we start to speak, if we go to the next slide, specifically about the codes that can be used and how we go about that, let's just spend a few minutes talking about how to document to support the use of that code for dementia patients. So the first is we have to think about the type of dementia that we're looking at, whether it is senile, potentially presenile, vascular, and I would also throw into here other conditions like Lewy body dementia or frontal or temporal dementia. And then we have to think about, is there an underlying neurologic condition to these types of dementia? So for vascular dementia, for example, what was the underlying physiologic change that led to that person having vascular dementia? And does that get us then to a principal diagnosis code that we can use? We also want to make sure in our documentation that we include any episodes of delirium, any delusions that are being expressed, any comorbid depression that is involved. And then we also want to get into documenting clearly about the behavioral disturbances, whether that includes aggression. Are they violent and combative? Are they verbally disruptive? Are they showing presence of having hallucinations? We would like to include all of these in the documentation to support what we're coding for. Next slide. Then we look at coding first the underlying condition when present for any of these conditions that are listed here. And you see there are quite a few of them. So let's skip right over then to the next slide and start to look at some codes that we may be able to use. Dementia is not one of them. But if we have patients with Parkinson's disease where the code is going to be G20, we know that 50% of patients with Parkinson's disease are over time going to develop comorbid dementia. So in those cases, we then have a Parkinson's dementia that we can use as the primary diagnosis. That in this case being G20 for Parkinson's disease with dementia as a complicating feature. Look further down to the fourth one down, G31.81, dementia with Lewy bodies with Parkinsonism. Here again, we've got the underlying physiologic issue that is tied into the potential principal diagnosis, that being the Lewy bodies, which are eventually at the underlying cause for the dementia and cognitive issues that have developed. So in that case, we would be able to use the G31.81 as a principal diagnosis. In the middle, you see some gray areas where it talks about Alzheimer's disease, either with early or late onset. These are unexpected conditions that come about from unusual circumstances. And they can be considered to be used, but they get a little tricky. Because in those situations, you'd have to use additional codes that are listed at the bottom, such as wandering to support using the Alzheimer's as a principal diagnosis. Let's go to the next slide. And we have instructions here on how we might code vascular dementia. So what are the issues here? The issue here is that vascular dementia is thought to be a manifestation of another issue that might have occurred, such as hypertensive cerebrovascular disease. So in this case, the coding steps would be first to code that underlying physiologic condition or sequela of cerebrovascular disease. And then in the second step, to use any other modifiers or secondary conditions, if applicable, for example, the wandering or any behavioral disturbances that might be present. This speaks to, again, why it's so important for us to include issues about this in our documentation. And then third, to always look at coding the severity, in this case of the vascular dementia, so that there would be specific codes, for example, F01.C18, that would talk about not just this being vascular dementia, but it being severe vascular dementia with behavioral disturbances. Again, this would be part of your additional diagnosis that's added. Your principal diagnosis would be what we started out with here, which is the hypertensive cerebrovascular disease. Let's go to the next slide. So hopefully, that sums up the important issues around coding. Typically, we see diagnoses used of senile degeneration of the brain. That's because that speaks to the underlying cause of the cognitive and functional decline, and is not seen as a manifestation disease, which dementia would be seen as. And that is why we see senile degeneration of the brain used so often in our patients with dementia. So I'm going to turn it over to Dr. Fish at this point, who's going to start to get us into specific discussion about medical management. Thanks, Al. I appreciate it. Dr. Fish here. I'm going to be talking about the three items on this slide, the underlying themes of dementia at the end of life, expected disease trajectory, and the palliative care checklist. The intention here is really not to teach you how to manage these things. It's really about categorizing these. It's helpful for you. It helps you to explain to families what is going on. And because there's often an issue with families, really, we assume that they know what we're doing. But they are very confused. They're overwhelmed often. And because they're overwhelmed, they may react emotionally, or they may have stress responses to a very stressful situation. So if you go to the next slide, I'm going to show you how it is that we categorize things and how we explain to patients what is going on. Before patients have gotten into hospice, they've been going through aging, typically. A lot of people, of course, are in hospice at a younger age because of other disease processes, but we're focusing on the geriatric patients. And we can break down to the patient's families and to the patients themselves the syndromes that they have been observing. And when you break it down in this way and explain it to them, it makes it a lot more palpable to the patients and to the families. It makes it more easy for them to grasp and therefore easier for them to deal with emotionally and also to participate. So the geriatric syndromes that we know well are incontinence, which of course is the number one reason for families to send people to nursing homes and also the biggest source of frustration. Sleep problems are a big issue for both the patients and the families because when the patients are awake at all hours of the night, especially if they have dementia, they can get up to all kinds of different things which can be dangerous to themselves and can be disturbing to other people. Delirium and dementia, of course, are huge issues and people don't understand the difference between delirium and dementia. And so I find it very helpful to explain to people that dementia does not usually result in quick changes. If there are quick changes to the patient's cognitive status, it usually is a result of delirium and delirium has quick onset and can often be addressed by finding out what the underlying underlying problems are. Of course, all of the above issues incontinence, sleep problems, delirium and dementia can lead to the falls that often send people to the hospital. They don't just happen in a vacuum. Osteoporosis is what leads to the fractures that result from the falls. And then of course weight loss is part of one of those geriatric syndromes that is not only visibly disturbing to families but also can lead to weakness, muscle breakdown, sarcopenia, which contributes to the above issues as well. So distinct from the geriatric syndromes that can go on for decades, there are the end of life complications that fall on top of and are a result of the geriatric syndromes. And these are all well known to you. The end of life complications are the unclear goals of care. It's often something that patients and families have not thought about, and often they have different opinions about these things. So that is definitely a complication when families have not discussed things and are not planned. And that of course means that if they haven't discussed the goal of care, the events directly are not done in advance. That adds to the caregiver stress. The caregiver stress is not only everything on the left hand column, but also concerns about what's going to happen when these things get worse and what happens when mom or dad actually begins to die, what am I going to do, we haven't talked about it. And then last, and definitely not least, what are the complications, the medical complications that happen toward the end of life. They don't happen in a normal succession, no particular sequence of events, and they don't have a normal timing. If you go to the next slide. One of the frustrations that caregivers and family members have with the process of dying is the fact that it does not work like it does in the movies, where you go to bed one day, and then you die quickly and without pain. In fact, dying from dementia and all of the geriatric syndromes that were listed before and are listed for the right again, often leads to a very gradual and uneven trajectory toward death. And this can be extraordinarily frustrating to the patients and to the family members, because the classic statement that you hear from people is, if it's not one thing, it's another. It seems like they're supposed to get a solution to each condition, and then that should be the end of it. But they don't realize that as people are approaching the end of life, and even as people are getting into their geriatric years, things will cascade. There are no cures for a lot of these conditions. You simply stabilize them until something else comes along. And this is what leads to this slow, inexorable trajectory. What are the complications? In addition to the ones that we talked about before, if you look on the right-hand column, there are all the comorbid conditions. These are listed before the geriatric syndromes, but all of those syndromes do not occur in a vacuum. You have the comorbid syndromes that contribute to all of them. You have the cardiac diseases of different kinds, congestive heart failure, for example, atrial fibrillation. Those combined with and usually occurring with COPD are the ones that lead to the cascading complications that inexorable lead to death. The medication burden is something that Al is going to talk about in a little while. People often have 20, 25 on the bedside table in the medicine cabinet and scattered around the house. And then, of course, the interaction between all those medications themselves can cause a lot of problems, not to mention the financial burden of purchasing all of these medications. So the medications themselves are a burden. Eating problems. People, as they get older, often do not have an appetite. They may have dysphagia as a result of Alzheimer's, both of which are going to lead to loss of weight and potentially complications like aspiration pneumonias. And then let's not forget the fact that the massive amount of pills that people are taking often occupy a significant corner of their stomachs, and so they can't eat because they're full of medications. Malnutrition obviously goes part and parcel with the above issues. If you don't eat, if you can't eat, or if you're eating exclusively pills, then it's going to lead to malnutrition. Indwelling catheters are very common for people who have mechanical problems with voiding and also people who are incontinent and who have skin breakdown, and therefore they need to have catheters. Those catheters, of course, are going to lead to infections and immobility is going to lead to pressure wounds and skin breakdown as well as other issues. All of these things, once again, are things that you have already seen, but the families need to understand that these are the barriers and the challenges that they are going to be seeing and that we're going to be addressing as they occur. And hopefully some of them will begin to be preventing by addressing all of them in advance. Next slide, please. So on the next slide, we're going to talk about palliative care. Palliative care, of course, is what I explained to patients, is something that we really should be doing for everybody from the beginning of from birth. It's not something that should be exclusively for people who are on hospice. I explained to people that palliative care is a way of making living more comfortable. It addresses dignity, it addresses pain, it addresses anxiety. And this is something that we definitely need to do and is often neglected when people are not on hospice, unfortunately. So we need to explain to patients and to their families that we go through a palliative care checklist with every single patient. It may not be an actual checklist, but certainly mentally it's a checklist. It's something we're always thinking about. But it's very helpful to go through it with the families and with the patients. And very top and center of this list is relief of pain and suffering. And that relief of pain and suffering is going to lead to improvement of quality of life for our patients and for their families. Nobody wants to suffer and nobody wants to watch anybody suffering. And so the pain and suffering relief is at the very top of the palliative care. But by no means is it the only thing. We also need to address the psychological and the spiritual aspects of the suffering. And that is not just pain. It is anxiety of what is going to come. It is depression. It is dealing with the fact that there are family issues that have never been resolved that should probably be resolved now. It is the fact that people have never thought about death coming for them. And you need to talk through that. So not everything is cured with narcotics. Some of these things are cured or taken care of by speaking with people and by bringing people in like social workers and pastoral care workers and music therapists and people like that who can help deal with the psychological pain that people are going through. Providing a support system to the family as part of palliative care. And that support system of course is offered by hospice. And people are not aware that that support system exists. And so we need to make sure that they're aware of it and that they know the plethora of services that are available. And then of course not everybody is going to be ready for hospice immediately. And so palliative care can be viewed as sort of a halfway point where you're starting to introduce all of these issues without people having to sign or agree to hospice when they still have hesitancy about hospice because signing up for hospice involves an agreement or an acceptance of the inevitability of death. And sometimes that's a process that people are not prepared for. So the palliative care and the palliative care checklist is a way toward approaching that. Next slide, please. So we need to create a groundwork for this. And the groundwork for care is addressing caregiver uncertainty and preparedness. And we do that with the checklist that we went through before. Once again, the checklist can be on paper or they can just be sitting and talking to people. It doesn't really matter. But the point is caregiver uncertainty and preparedness should be addressed. And when you do that right at the outset, it's going to make it easier for everybody. Then we move on to decision-making. Now, one of the things I do when I talk to people about palliative care and hospice is I tell them immediately, I do not expect you to tell me yes or no at the end of this discussion. I do not need you to think about what your answer is going to be. That decompresses the conversation. What I do is I sell them, I'm going to simply introduce the concepts right now. I'm going to address your questions. And then I will come back either on the phone or in-person and we can talk about it again, address your questions after you've thought it over and talked about it with your family and with your loved ones. And at that point, we can get a decision. And if you still don't know, we'll get a decision after that. But decision-making inevitably should happen because as you all know, and as I explained to my patients and families, if you don't decide, a decision will be made for you by nature and by God. So this is your opportunity to make a decision about your future. So decision-making is something that is very important and you need to prepare them for that. And of course, what are we deciding about? We're deciding about the goals of care. And the goals of care, you can think of them in terms of the most or the post form, but you can also think of them more broadly. Sometimes the goals of care are not on the most form or the post form. Sometimes the goals of care are, I want to be out of pain and I want to go and see my grandson's bar mitzvah, or I want to go and sit in my garden. I even had a patient told me that I want to sit in my garden and have a cigarette and a martini before I go. And that is a very achievable goal of care. And so we need to express these in order to help people and make those available to them. Advanced care planning is of course the documentation and the discussion maps all of these things above up into a nice bundle. So what happens if you don't do that? What goes on if you don't do any of things is the caregiver nightmare. And that caregiver nightmare is of course something that I'm sure everybody has seen. And the whole point of this section of the talk is to avoid that. And that is the emotional rollercoaster and the drain on resilience and the drain on your endurance and the shock and the loss. And of course there's the guilt because family members have the guilty feeling when they're exhausted. And when they've been through weeks and weeks of pain and agony and financial and emotional strain, they have the guilt of thinking, oh my God, when is mom or dad just gonna die? And then of course you think, oh my God, how did I think of that? What kind of monster am I that I thought about that? So there is this cycle of guilt and agony that people go through. And it is important to address and tell people that it's perfectly normal. There's the confusion that people have after thoughts like that. And the confusion about the fact that people thought, oh, we just got through that medical problem. Why are there more problems? Why is the doctor not taking care of them? So patients and families get confused. There's the anticipatory grief, which sometime can express itself as actual traditional grief and crying and loss. Sometimes people act out with anger, which I'm sure you have seen, which doesn't necessarily express itself or announce itself as grief, but often is. Existential stress is another form of anticipatory grief. I'm not an expert at that, but I do know where to find the experts. We have access to pastoral counselors, music therapists, once again, people who are well familiar with existential stress and anticipatory grief. And of course, they address questioning of spirituality. Finally, there's the burnout of the caregivers. That can be family members. It can be patients caring for themselves. It can be burnout on behalf of the professionals as well. It's very important to pay attention to your nurses and your staff and indeed to yourself because burnout is a real thing. And often it's not recognized by the persons themselves. Sometimes it's recognized by people who work with them. And it's important that you recognize it, tell them it's okay, and give them permission to burnout, but then be firm about them taking time off so that they can recover. Next slide, please. So this is an example of caregiver preparedness. This would be a question that you could address to a family member. When your loved one was diagnosed with Lewy body dementia, did your physician have a conversation with you about what to expect? This was done in a study in the Journal of American, Geriatrics. And the respondents said 40% of them, I'm sorry, let me reframe that. When this was presented in a questionnaire in the journal, 40% of the respondents said, yes, the physician did have a conversation with me. And 20%, 22% of them said that that conversation was helpful. Okay, you can look at it as a 40 and 22%. I view it as 60% of physicians did not have that discussion. The majority of physicians did not have that discussion with the family members. That is not acceptable. You need to have that discussion. The caregivers and the family members and the patients are not necessarily gonna ask you for that discussion. You need to initiate it. And the fact that only half of people said that, only half of the people who responded, yes, said the discussion was helpful, that's probably multifactorial. Partly because people, when they're aggrieved, don't necessarily hear the discussion. They go through the motions, they say the words, but sometimes the discussion has to happen more than once in order for their questions to really be addressed and for the information to sink in. Next slide, please. So caregiver preparedness. We talked about education. Education is very key to their preparedness, but then that leaves the issues of finances and benefits and the practical and logistical issues that are involved. And what we find is that less than 80% of people who are on hospice have actually used all of their hospice benefits, which means that they, and this goes part and parcel with the fact that a lot of people only get into hospice within the last few days of life. So it stands to reason that if somebody dies within two days of getting on hospice, they're not gonna be able to take advantage of all of the different counselors and palliative care and skills that we have. So it's important to talk with people early, get them in hospice and palliative care early and make sure that they understand all the benefits that are involved with it. So various causes of death that have been identified amongst patients with Lewy body dementia. This is continuing with the earlier discussion and obviously is very focused on Lewy body, but in keeping with the earlier slide we showed with their trajectory, where people have this inexorable slow decline, this is an example of that. We explained to people who have had Lewy body or who have Lewy body dementia, we tell the caregivers that a significant number of people are going to have simply failure to thrive. You may try and feed them, you may try and exercise them, they are just not going to respond. And you need to accept when that happens. Almost a quarter of people are going to have pneumonia as a result of dysphagia, because even if you're feeding them properly and feeding them with the proper consistency of food, they're still going to aspirate because of their dysphagia. 20% of people are going to have other medical complications because Lewy body dementia is so complicated. And there are all of their other chronic diseases which came before the Lewy body dementia. And then finally, 10% of people are going to fall no matter what you do. And they need to understand that it is not something that they need to feel guilty over. Guilt is not going to be helpful to them. They simply need to accept the fact that there is a 10% chance that their loved ones are going to fall. We need to be ready for it and we need to address it when it happens. Next slide. So moving on now to decision-making. Family members and providers, family members and patients need to understand that decisions will need to be made. How are those decisions going to be made? And this is a very important discussion because I find that medical proxies often are confused about this as are patients because I'm sure you've all heard at some point, some patient will say, oh, my daughter knows what to do. When you said, did you sign a MOLST? And they'll say, oh, my family knows what to do. And they have never discussed it. And you know very well, the family often does not know what to do. And often there is opposing views about what to do. So it's very important to explain that to patients and to family members so that they can all express in advance what their thoughts are. And then this is where you need to guide them and make it clear to them that whoever's the medical proxy was chosen by the patient and that it is the patient's choice. There should be no discussion, no argument over it. And further that the medical proxy's job is not to express their own wishes and impose them on the patient. Their job as a medical proxy is to fulfill and enforce the patient's choices, the patient's choices that were expressed to them. And I always discuss with the medical proxy, is that something that you think you can do? And if it is not in line with your values, are you going to be able to do it anyway? Because you are agreeing to fulfill the patient's wishes, not your own. If you cannot honestly say that you're not gonna be, that you're gonna be able to do that, the ethical thing to do is to sign your privileges over and your responsibility over to somebody who can do that. Okay, as part and parcel of that, down to the fifth bullet point, you'll see review of prior written directives. All of those decisions should weigh the benefits and the burdens. And those benefits and burdens need to be discussed. Next slide. This slide breaks down classic three decisions that are to be made. The one on the left is the one which is the aggressive care option. And that is, I want my parents to have access to all available medical treatment with the goal of living as long as possible. Typically, this is not hospice, but it can be hospice because people can go onto hospice and agree not to treat the terminal cancer. But that does not mean that they can't go but that does not mean that they don't have to get their other conditions treated. And the goal may be for the person to live as long as possible and fulfill the six month window and potentially longer. So while this seems to be contrary to hospice, it is not. On the right is the classic hospice decision. I want my parents to have treatments that will control distressing symptoms and maintain comfort as much as possible. That is ideal. That is, those are the two ends of the spectrum. And then yellow is the middle ground. I'd like certain treatments to be offered. Otherwise, I don't want anything too aggressive. Next slide. Al, I'm actually gonna ask Al to step in here because I'm losing my voice. Al, are you still available? Yeah, so in this third part, this goes into a lot of what we've gone through already. Discussing the goals of care, anticipating what future complications might occur after you've educated on the possibility of what may happen, revisiting that conversation as disease progresses because the family and caregivers will have different understandings of different points down the line, looking at really important options such as ER visits and hospitalizations and whether or not there'll be consideration for artificial feeding and nutrition. And also that DNR, DNI point, because many patients, even though they are open to hospice care, are simply not open to having that discussion about DNR, DNI, and then at some point they get into the hospital and that's when they really start to take it seriously and they may agree at that point, but it's so much better to have these options discussed and put in place early on before those conditions and all of the stresses that go along with it occur. And then certainly any discussion related to potential for placement in a chronic care facility. I'm gonna jump ahead, Gina, if we can go two slides ahead. And let's get into some discussion about deprescribing. We go to the next slide. We're gonna start the discussion looking at a lesson that was taught to me a long time ago that I call the dollar and 88 cent rule. So what does that mean? That means that as you age, you generally have medications that are added to treat conditions. And I'm speaking more about the chronic conditions like diabetes and hypertension and GERD that come along. And somewhere along the line, probably around that fourth medication or so, you start to get an increased risk for medication interactions that are gonna cause symptoms. And as those additional symptoms occur from taking medications, what we tend to see is what I call the cascading effect, where instead of removing some medications that may longer have a place that may be responsible for interactions causing these symptoms, we simply add more and more medications to treat these symptoms as they occur. So that is the cascade. And where the dollar and 88 cents comes in is that there was data that I saw, again, many years ago, that spoke to the fact that for every dollar's worth of medication that's prescribed, we see about a dollar and 88 cents spent on medications to treat the side effects of the original dollar's worth of medications. So it's really important when we start to have this discussion about hospice patients in general, but particularly those with dementia who are elderly, that we look at deprescribing, because that in and of itself can take away burden and improve symptoms. If we go to the next slide, we see the cholinesterase inhibitors, where as the person ages, we know that now the benefits that we may have seen initially are going to diminish as the risks of taking these medications, particularly intolerable side effects that might include GI disturbance that would interfere with appetite, may kick in. So it becomes now a discussion about the fact that these medications may no longer, in end-stage dementia, be providing some of the benefits that we saw initially. And it may help, particularly considering potential side effects, that we go ahead and discontinue these medications, doing so gradually over a one to two week period of time. If we look at the next slide, we might see some patients who will have an emergence of neuropsychiatric symptoms as their cholinesterase inhibitor is taken away. In fact, years ago, there was a study that was done by Omnicare Pharmacy, that's a chain of pharmacies and services, long-term care facilities, where they actually collected data on patients who were withdrawn from their cholinesterase inhibitors, where they found that as that was done, they did see emergence of behaviors to the extent that they had to gradually introduce and increase doses of antipsychotics, antidepressants, and anxiolytics. And at the same time, many of these patients saw a decrease in caloric intake over time, so that in those situations, you do have to have an open mind toward reintroducing these medications, if you happen to observe that in patients, and hopefully that we get those symptoms back under control. We go to the next slide, and it speaks to issues with antiplatelet agents and anticoagulants. Particularly that combination that we so often see of aspirin and Plavix, where in many cases, the therapy of that combined treatment may only be beneficial for 12 months, maybe a little bit longer than that. It certainly introduces an increased risk for bleeds with falls. Can, if it is causing issues related to the aging and decreased caloric intake associated with aging, lead to less protein binding of the anticoagulants specifically, that could lead to higher levels and higher risk for bleeding. And certainly if the person's having difficulty swallowing, they may not be able to consistently take these medications and get the benefit from them anyway. The inhalers, we have seen a lot of issues with, can this patient take the inhaler effectively? They don't have the coordination for breathing. They don't have the inspiratory capacity any longer. Their physical and cognitive aptitude has declined. So we see a lot of errors in taking these inhalers over time. And to the next slide, we see that we may see benefit, even though for a short period of time, we had some concerns about the use of nebulizers because of COVID and dispersing virus. That is less of an issue now. So we need to get back to this idea of potentially switching these patients from their inhalers, which are not being used effectively, to the nebulized solutions. And even with inhaled corticosteroids, looking at the potential of switching those to oral corticosteroids, understanding that not every patient is going to be able to tolerate the oral corticosteroids in this situation. But if they can, it might give us additional benefits of improving their appetite, having an impact on their inflammatory pain, potentially reducing the levels of fatigue that they have, and certainly could help with reducing the exacerbations of their respiratory symptoms that we might see. Oral hypoglycemics. We know that there's going to be changes in the goals of care with diabetics who have end-stage dementia, where initially, we're all in to having goals that include intensive glycemic control, keeping their fasting glucose under 130 milligrams per deciliter, having that hemoglobin A1C as close to 6.5 or under 6.5 as possible, and understanding that if we can accomplish this over time, we're going to reduce the long-term risk of retinopathy, kidney disease, and neuropathy. But that changes now, if we go to the next slide, with our patient with advanced dementia, where now the reasonable treatment goal is going to be to avoid hypoglycemia, while minimizing symptoms of not hyperglycemia, but sustained hyperglycemia. So now, it would be a much more reasonable approach. Instead of aggressively doing finger sticks, and having oral agents on board, and having sliding scales on board, and checking A1Cs, that we instead do finger sticks maybe several times a week, targeting to keep that fasting blood sugar under 200, make corrections as necessary. Stop checking it altogether if they're actively dying, because then it really doesn't help the patient to continue to check. And simplify these complex regimens that they may have been on for a period of time. Discontinuing non-insulin hypoglycemic agents, if you're comfortable doing that, and managing with doses of insulin several times a week, again, to avoid that sustained hyperglycemia that may occur. Stop your A1Cs, stop the sliding scales, decrease the frequency of testing. That should be the bottom line here. With statins, hyperlipidemia, let's think about this for a second. Hyperlipidemia does not cause symptoms that need palliation. Hyperlipidemia is also not contributing to the patient's six-month or less prognosis. So the use of statins in the hospice patient can be very questionable, especially considering the fact that these patients have advanced age, multi-morbidities, frailty, sarcopenia, cognitive decline. So unless that person has had an event within the last 18 months, cardiac or cerebrovascular, that would support a potential use of the statins, these are medications that really should be looked at for discontinuation. Let's now start to have, we can go to the next slide after this. And we'll go straight to nutrition and hydration. So nutrition and hydration, a couple of issues we're going to talk about here. If we can go to the next slide. We know that it is just about inevitable that at some point these patients are going to develop difficulties with eating and with drinking. That's because of their poor cognition. They're going to have increased risk for pocketing food. They're going to have varying degrees of dysphagia, whether that is oral or pharyngeal. Depression is also going to potentially have an impact on their mood, as well as infections that can occur. And so the issue here is, how can we effectively provide nutrients and liquids that are going to sustain that patient to the extent possible? But more importantly, that they're going to be able to enjoy what we are providing. Go to the next slide. And we can see that there are limited medical interventions that we can apply here. Looking at the medication profile and reducing polypharmacy to the extent possible that we just went through. Making sure that any dental issues that can be looked at and treated are taken care of, as well as any dysarthria that may have occurred. Screening for the onset of movement disorders, especially in patients who might be taking psychotropic medications, or in those that have underlying neurologic conditions, such as Parkinson's disease, that are going to interfere in such a fashion. Keeping in mind that actual medications are going to be limited in what they can potentially do. Except in cases where we might see remeron, which is used as a potential appetite stimulant. But remembering that data tells us that remeron doesn't do as much stimulating appetite as it does stimulate carbohydrate craving that really doesn't give us the caloric means to sustain us. But rather to put on weight that isn't really helpful. Megase is also a consideration. But remember, these patients in general can be very immobile. And megase can increase the risk for deep vein thrombosis. So there are really then non-medical interventions that we really try to focus on here, because the medication issue is so limited. That's going to be to make sure we're giving them food that matches their preference. That we put stronger flavor and heavier spicing in so that they have greater chance to enjoy it. That we're very aware of the texture of the foods that we're giving. We offer the finger foods. We give smaller portions. And we give them these supplements that are going to be appropriate. And through all of this, give them the appropriate assistive devices to help them eat. Hand feeding, if we go to the next slide, is going to be very important for us to remember as well. Because that can certainly help them maintain nutrition to the extent possible. But we have to remember that that takes a lot of time and patience in order to effectively accomplish any gains with this. And while we're doing this, to take away any distractions that might keep them from focusing on the food that they're eating. But again, not to lose sight of the main focus here. And that is that the main goal of the oral feeding is to provide food and drink to the extent that the patient is going to enjoy it. That's the whole point. Let's go to the next slide. And we'll talk about infections and antibiotic stewardship. I'm going to focus here first on urinary tract infections. Really important here to understand that in dementia patients, urinary tract infections can create nightmares in terms of discomfort that the patient isn't able to express to us in words, but they do express it to us in terms of behaviors. So they can become very aggressive. They can become very disruptive. They can start to have worsening of any type of behavior you can imagine when there's an underlying urinary tract infection involved. So from that perspective, it's important to be able to recognize these episodes and treat them effectively. We're also going to have other situations where patients are going to have strong, concentrated, foul, odorous urine that they're presenting with that we might think is a urinary tract infection, in fact, may be. But that type of urine can also be secondary to the poor hydration status that many of these patients are going to have. So we have to weigh that and carefully consider whether or not we're going to offer antibiotics in that case. But one area that I see that is often overlooked as presentations of urinary tract infections are the new onset incontinence or the worsening incontinence that they may present with, or the higher levels of fatigue that they suddenly present with. These are indicators of, potential indicators rather, of urinary tract infections and should be investigated if you think from a palliation standpoint, you can help them with the administration of the antibiotics. We go to the next slide. And the situation becomes a bit different with the lower respiratory tract infections that may occur because in this situation, we know that lower respiratory tract infections very often lead to death. We go to the next slide. And we see data related to how these are generally handled in a study that was done in the Netherlands where 23% had no treatment, 8% did have antibiotics, but strictly as a palliative measure, 69% offered as curative treatment. And then at the next slide, we look at the results of this. And we can see that 90% of patients where antibiotics were withheld did die within a month with a median of two days. For those that did recover, there was a median of about nine and a half days to their recovery. 48% of those treated with palliative antibiotics died within a month, a median of five and a half days. 27% of the patients who received curative antibiotics also died in a month. Median time to recovery for those that did recover, 10 days. Point here is that we know that pneumonia is gonna be a significant cause of death in dementia patients. So when these issues come up, there needs to be a discussion around number one, expectations to recovery. Number two, potential impact on quality of life. And also number three, any of the ethical issues that need to be raised around withholding antibiotics for lower respiratory tract infections, given what we know about these death rates within a one month period of time. Let's go on to the next slide. And we'll just talk briefly about falls and traumatic injury. In the home, there certainly are a lot of risks that might be involved in some of these falls with lack of grab bars or shower seats or tripping hazards or lighting that may be involved. There's obviously underlying health risks such as muscle weakness and impaired balance and neuropathies and medication side effects that come into play. So again, trying to reduce the medications can have an impact on the falls. Certainly there's behavior risks where the patient simply cannot understand their physical limitations. They don't understand safety barriers and they can be very restless and agitated. So all of this is a big groove for what we know can be a huge problem. And so we try to come up with preventive interventions. If we go to the next slide, we see the traditional ones that can be considered where we're removing those obstacles such as rugs when possible. I heard one case of a patient who had a series of rugs placed down by the family members with the family members thinking this would lead them down a pathway that they would want them to go within the home. But each one of those was in and of itself a separate tripping hazard. If we go to the next slide though, we see where there are less traditional approaches that we can apply in terms of the end stage dementia patient even though there are limited sets of data on these interventions. But first and foremost, look at underlying pain and anxiety because often that restlessness that leads to the attempts that result in a fall come about as an expression of pain or anxiety in these patients. We, again, wanna look at medical interventions. That's the prescriptions and other things that if we remove them, would remove a burden from that patient that can be underlying triggering behaviors that lead to falls. And the bottom line really to the whole thing is trying to maintain comfort while we're managing all of these symptoms. Let's go to the next slide. We'll talk about pain management for a bit. And again, the issue here is that many patients with dementia have pain particularly in those last three weeks of life. So it's important to recognize that to use a pain at scale to assess patients with impaired cognitive function. In addition to that, to understand that because their cognition may not allow them to ask for medications that it's really important for us to put in place standing doses of medications for them. Go to the next slide. Use the step ladder that's provided for the World Health Organization to help us in choosing analgesics that would be appropriate, keeping in mind that there's certain medications we wanna try to avoid, such as codeine, which we know is a pro drug that'll have to be converted to morphine and tramadol, which has increased risks. So the bottom line here is it's best for us to stick to low doses of strong opioids and improve or rather escalate the doses as necessary to keep the patients under control. In the next section, I just wanna speak and I have a lot of slides in here that look at pharmacologic and non-pharmacologic interventions. We'll make these slides available to you so that you can review the information. But the bottom line here is that with the behavioral issues and mental health issues that we see with these patients, we know that psychotropic medications, in particular antipsychotics, are used to manage these patients in terms of dementia-related psychosis, which we know is a real concern in these patients. If we go to the next slide, we know that there is a boxed warning around these antipsychotics because of the increased risk of death compared to placebo that was seen early on with the use of these agents in the elderly, that includes those on hospice. So we really want to try to avoid these medications when we can because we know they present such great risks. If we go to the next slide, you can see a summary of all of the adverse events associated with a variety of antipsychotics that are listed in this table. But at the same time, we know that these medications can be very effective, even though they're not FDA approved, to treat the wide variety of neuropsychiatric symptoms that can occur in these patients. Bottom line is that we introduce them at lowest dose possible. If we need to increase them, increase them in only small incremental doses, always looking to try to reduce the dose if possible to relieve the burden of any of these side effects that may occur. And also understanding, because many of these patients may have been on these agents for an extended period of time because of psychiatric issues that they may have had before they developed dementia, that if we start to reduce the dose of these medications or if the patient is unable to take them any longer and stops taking them, that removing these agents can cause movement disorders such as unmasking tardive dyskinesia, which can interfere with quality of life and eating issues that I talked about earlier. Go to the next slide. We see a couple of slides that talk about non-pharmacologic interventions. There are quite a few of those mentioned. I know there were questions that came out around the use of acupuncture in these patients. And is there any evidence to support that? Unfortunately, though this has been looked at, the benefit with acupuncture has not been established. There are other things that we look at such as massage therapy that we know, for example, can create some reduction in behaviors that we see, but only in those situations where the massage has been done by an experienced, trained individual. So that's very important. The last pieces of this relate to late life unipolar depression, which I'd wanted to put some information here. Again, you can review most of this after the presentation when you get the slides, but just speaks to the fact that when late onset depression sets in, it can be very different than that, which we see at earlier age, where there's generally no family psych history that you can look at or past psych history in that individual. Medical comorbidities tend to be present at a higher rate. There's less suicidality that is seen. The other features associated obviously are more prominent. If we go to the next slide, we also see that there is higher risk for relapse. Those can occur more rapidly. Functional recovery, usually less. We go to the next slide and we see that, we can go to the next one after this. There's a number of medications that we can use to treat these individuals, typically starting with SSRIs that are preferred. But in many cases, these patients also present with a tremendous amount of sleep disorders where, yes, the SSRIs may help with this, but we also might see some additional assistance with medications like Trazodone. And we mentioned Remeron that might also help with the appetite suppression that we see. There's a last section in here that I'm going to leave out. There is going to be a coffee chat that's coming up in June. Perhaps we can talk about these issues at that time, but they really speak to what happens with extended lengths of stay and how Medicare might look at that in evaluating the program that you have in place. And also, in the very last slide, talks about subacute rehab and issues that come about with patients potentially being asked to revoke by their skilled nursing facility for the purpose of getting into the subacute rehab. I think these would be really good coffee chats that we can have. Hopefully we can do that in June. So thank you for the attention. I think we're at the top of the hour now. I don't know if we have time for questions at this point. So I think we're past the top of the hour here just by a couple of minutes, which is just fine. But, and I think we did have some questions that came through early. I think what we'll probably do, if it's okay with you, Dr. Riddle, is capture the questions in the chat that were asked, as well as the questions that came in early, and maybe see if we can kind of send a note out to all the attendees with answers to those questions or your thoughts on those questions. Since we're past time now, we have folks who probably need to head out to other meetings and those kinds of things. So if that works for you, that'd be great for us as well. So, all right, everyone, thanks again for attending. Really appreciate it. There's so much to take from this presentation. So hopefully you had a great experience and we'll send out the copy of the recording of the session, as well as what we talked about, the answers to those questions and the slides as well, to you all. We appreciate you attending and thanks so much. Thanks again to Dr. Riddle and Dr. Fish for your presentation. Thanks so much.

dementia care

hospice patients

ICD-10 codes

documentation

palliative care checklist

caregiver preparedness

goals of care

medication reduction

urinary tract infections

symptom management