Dementia is often a highly burdensome disease process for patients, their caregivers and families, and the community at large. Palliating symptoms and providing guidance surrounding advance care planning and prognostication are integral components of the management plan.

In this episode, Katie Grouse, MD, FAAN, speaks with Neal Weisbrod, MD, an author of the article "Neuropalliative Care in Dementia" in the Continuum® December 2025 Neuropalliative Care issue.

Dr. Grouse is a Continuum® Audio interviewer and a clinical assistant professor at the University of California San Francisco in San Francisco, California.

Dr. Weisbrod is a neurologist at Hartford Healthcare with the Ayer Neuroscience Institute in Mystic, Conneticut.

Additional Resources

Read the article: Neuropalliative Care in Dementia

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Full episode transcript available here

Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast.

Dr Grouse: This is Dr Katie Grouse. Today I'm interviewing Dr Neal Weisbrod about his article on neuropalliative care in dementia, which appears in the December 2025 Continuum issue on neuropalliative care. Welcome to the podcast, and please introduce yourself to our audience.

Dr Weisbrod: Thank you. I'm really excited to be here. I'm Neal Weisbrod. I'm a neurologist and palliative care physician currently working at Hartford Healthcare in Mystic, Connecticut.

Dr Grouse: To start, I'd like to ask why you think it's important that neurologists read your article?

Dr Weisbrod: The primary reason I think it's really important to read the article is because these are just really common problems that neurologists run into in clinical practice. So, Alzheimer disease and many other dementias are extremely common, and managing the burdensome symptoms and the complex discussions that we have to have with the patients and their families as they go through the course of dementia is something that is very common in clinical practice. And so my hope is that by reading this article, clinicians will pick up a few tools, a few new ideas for how to make these conversations easier and for how to help these patients get through the disease with a little bit less suffering.

Dr Grouse: I learned a lot from reading your article, and I really encourage our listeners to check it out. But I was curious what you feel that you discussing your article would come as the biggest surprise to our listeners?

Dr Weisbrod: So, I think that the most surprising thing a lot of people will see reading this article is the section on prognosis. A lot of times it seems families are counseled, when they're talking about the prognosis of Alzheimer disease, that it could be ten years or longer. But really, the data show that for many patients, the median prognosis is closer to three to eight years. And that is a little bit longer for Alzheimer disease than many other types of dementia, but also gets significantly shorter as patients get older. So, we're looking at a closer to three-year median prognosis for patients who are over eighty-five, whereas patients in their sixties are probably closer to the eight or nine-year median prognosis. And so I think that piece will hopefully help people give a little bit more accurate counseling about prognosis.

Dr Grouse: I'm glad you brought that up because I was wondering, why is it so important that we are careful to make sure that we're giving prognostic information for our patients and maybe even updating it as their clinical status changes?

Dr Weisbrod: I think first of all, it's a really common thing that patients and families are thinking about and worried about. They don't necessarily always seem to ask as much as they want to know. I think there's a lot of fear around that conversation, even though it's really important. And then there's also often tension between the family and caregivers tend to want to know more than patients do. I think that it really helps people plan for the future as well as possible to know what their future might be. And we have a lot of limitations in predicting the future, but using the best information we can, laying out what we think the likely range is, allows people to make a lot more clear plans for their future.

Dr Grouse: I'd imagine it's also pretty helpful for hospice referrals, too, having that data.

Dr Weisbrod: Yeah, definitely. And there's a lot of angst about when to refer patients who have dementia to hospice. The most important thing I think about when I'm making a hospice referral is that I don't have to be right. And I think it takes a lot of that concern off to just say, all I'm doing is making a connection, getting someone who's potentially interested in the hospice, who has a really advanced serious illness connected to a hospice agency. And then they can go through the full evaluation with the hospice and the hospice medical director and determine whether they're eligible. So, I think there are really helpful thresholds to think about that would be a good trigger. Like a patient who we think has advanced dementia, who has a hospitalization for pneumonia or a fracture of the hip or some other really serious acute medical condition, I think is a really good trigger to start to think about hospice. But most importantly, it's just the connection, and I tell the patients that upfront. I tell them that you're going to have a conversation and we'll decide whether you're a good fit, and if not, the hospice will usually just check in with you over time and decide when is the right time in the future.

Dr Grouse: That's really helpful. And I think just a really great reminder to our listeners about thinking about hospice sooner or at certain critical points in their patient care rather than waiting, maybe, before it's gone on too long and may be of less use later on. I was wondering, in your own clinical practice, what do you think is the most challenging aspect of providing care to patients with dementia?

Dr Weisbrod: I think this one's easy. I would say managing the time has to be the most difficult part. I think that taking care of patients who have dementia is time-consuming. There's a lot of different priorities that we have to manage the time around. How much time are we going to spend doing cognitive testing? How much time are we going to spend doing counseling? How much time are we going to spend making up a treatment plan and discussing medications? How much time are we going to spend on advanced care planning? And the way I try to combat that is really just trying to think about what I'm going to prioritize in a certain visit and not try to accomplish everything. I'll tell patients and their families, the next time you come in, we're going to have a conversation focusing on advanced care planning. Or, the next time you come in, we're going to sit down and try to talk through all the questions you have about what the future might hold. That way I in that visit, I don't feel like, oh, I have to do updated cognitive testing and I have to review all the next steps in medication, and that allows me to take it in more bite-sized chunks.

Dr Grouse: You made some of the great points, and specifically you mentioned advanced care planning. Your article makes a really strong case for the importance of advanced care planning, yet you definitely acknowledge the many barriers to initiating discussions that clinicians face. In your patients with dementia, can you walk us through how you integrate discussions about advanced care planning with your patients and their families?

Dr Weisbrod: Yeah, I think this is still something that is evolving in my practice, and I don't think there's any perfect way of doing it. I think there's a lot of right ways of doing it, and as long as we're thinking about it a lot and bringing it up periodically, that's probably the best. What I try to do, though, is after I discuss what I think is the most likely diagnosis with patients and their families, I try to have a fairly close follow-up visit after that. Allow them to digest that information, to often do a little bit of their own research, to talk about it as a family. And then when they come in for that next appointment, I try to at least lay some groundwork about advanced care planning, asking them what they've completed already, and then based on what they've already done to that point, talking to them about what I think the next step would be. If they have done nothing, usually it's just, hey, I really think you should start to think about who would be making decisions for you if you lose the ability to make your own decisions and counsel them about power of attorney paperwork and establishing a healthcare surrogate. When it's patients who have already done some of that initial prep, I think that it's really important to keep in mind it's a longitudinal discussion and you can take it in small pieces over time. Often that helps because you can really establish that rapport and that trust. And then I like to just keep checking in whenever there's major changes in the patient's health or condition, like admission to the hospital or transfer to an assisted living facility or memory care clinic. Those are good times to remember, hey, I really need to revisit this conversation.

Dr Grouse: It's probably good to also mention another really important point from your article, which was that impairment of decision-making in patients with dementia can actually start significantly even in the phase of mild cognitive impairment. Yet these patients will need to make many medical decisions with their neurologist as they go through this journey. How can we make sure our patients have capacity and make decisions appropriately regarding their care?

Dr Weisbrod: Yeah, I think that's a definite challenge of taking care of patients with cognitive disorders of any type, including those with stroke and multiple sclerosis, that have some cognitive impairment. In my opinion, the most important way to help manage that is to make sure when we are making important decisions about the future that we're having a deep exploration of the values and the reasoning behind that. And definitely teach back is the most helpful way that I use to explore those values and the logic behind patients' decisions. So, I think we have to have a really low threshold to move on to a formal evaluation of capacity; if there's any inconsistency between what the patient's saying now and what their families say they've said in the past, or if they're having struggled to come up with a really clear logic behind their decision, then I think we have to have a low threshold to move on to a formal evaluation of capacity. So, I think having the family involved, having other people who know the patient really well, usually helps identify some of those periods where it seems like the patient's not making the decision that really reflects their true wishes.

Dr Grouse: Now I wanted to switch gears a little bit and get into the management of neuropsychiatric symptoms, which you spend a lot of time on and I think a lot of neurologists find very challenging. What are some nonpharmacologic approaches that can help patients with significant neuropsychiatric symptoms?

Dr Weisbrod: I really like the DICE paradigm for coming up with nonpharmacologic approaches. The DICE paradigm is an acronym. The D is Describe, I is Investigate, C is Create, and E is Evaluate. The idea is that we're exploring what's happening behind the symptoms, we're creating a plan to intervene, and then we're evaluating the outcome of that plan and creating a sort of feedback loop there. But ultimately, I think, when we're creating a solution, thinking about how we can change the environment is the most important thing. We have very limited ability to change the way that someone who has severe cognitive dysfunction reacts to their environment, but we can often change the environment to not produce that reaction in the first place. One example is with wandering behaviors. Trying to change the environment where you put locks that don't have deadbolts that you can use on the inside of the house, you have to have a key on the inside of the house, and then the family can put that key somewhere safe where the patient is not likely to find it and be able to unlock the door and wander out unsafely. I also think it's really important to acknowledge that as doctors, we are maybe not the best people to always have the answer when it comes to changing a patient's environment. And so, I think we really need to rely on the wisdom of support groups and other people who are going through the challenge of dementia. Our interdisciplinary care teams like social workers and nurses who have experience in managing dementia, and really try to plug the caregivers into as many of these avenues as possible so that they can learn from all of that community of wealth and not always rely on the doctor to have the answer.

Dr Grouse: Switching gears to pharmacologic management, which is a lot of what we do for patients as neurologists. Thinking about agitation, pharmacologic management of agitation can be very challenging. And reading your article, it reminds me how disheartening it is to reflect and how modest the effect of the available options are, along with the many potential risks of their use, When nonpharmacologic interventions fail, what should neurologists recommend for their patients with agitation?

Dr Weisbrod: Yeah, I definitely agree. It's every time I go back and look at this literature and look at what's new, it is a bit disheartening. But even in the face of all that, I really feel like SSRIs are my first-line therapy for most of these patients. I always try to ask myself what might be causing the patient discomfort that they are then manifesting as agitation because they don't have a better way of expressing themselves. Often, I feel like that's anxiety or depression or some other psychological symptom that we might be able to address with an SSRI. So, I tend to use sertraline and escitalopram, start those early and as long as patients are tolerating it, give it a really good trial. Outside of that, escalating to other pharmacologic approaches, even though there's such controversy in the data about antipsychotics and even though there are very real risks, sometimes I think we essentially do need a chemical sedative. And I think that it's important to have a very frank conversation upfront with the caregivers and the medical decision maker for that patient. Make sure we are counseling them on the risk, the increased risk of mortality, and also to make it a time-limited trial. So, I think that saying we're going to try this medication (if the patient's decision maker agrees, obviously) for a month or two months or three months. But I definitely wouldn't want them to just have an open-ended plan where they're going to stay on it indefinitely. It should have some end point where we say, hey, is this working or not? And if it's working, then we'd make a decision, is the improvement in quality of life worth the risks? And if we're not seeing that improvement, then we definitely need to stop it.

Dr Grouse: That seems very reasonable. And then thinking more towards some of the other types of symptoms that can be really challenging, I was really surprised to see how often uncontrolled pain is a significant contributor in patients with dementia. And certainly, both uncontrolled pain and poor sleep can worsen cognitive function and neuropsychiatric symptoms in general. But of course, there's ongoing concerns about side effects of these therapies and how they can also potentially worsen things. How should we be approaching management of pain and insomnia or poor sleep in these patients?

Dr Weisbrod: I think the key is just to start with really low burden treatments and escalate carefully and start with low doses of higher risk medications. So, when I think the low burden treatments for pain, scheduling acetaminophen, 1000 milligrams every eight hours, seems like a trivial thing to do, maybe? But it's actually surprising how much scheduled acetaminophen can take the edge off of pain and might be able to avoid some of these flare-ups of neuropsychiatric symptoms, may be able to really improve that pain a little bit. I do think it really has to be scheduled, though. Trying to rely on patients who have significant cognitive dysfunction to use a PRN medication is going to lead to a lot of problems and undertreatment. And then on the sleep disorder side, I think starting with low-dose Trazodone and gradually increasing the dose of Trazodone as a really safe way of initially approaching the insomnia. And then only when it's a more refractory case do I reach for the high-risk medications. Like for pain, we're talking about opiates. I think there's a lot of very reasonable concern about using opioids in patients who have cognitive dysfunction. But if there is a really good reason to think that they have severe pain, like they have a past pain disorder, I think that just like with antipsychotics, there are definitely real risks to these medications. But at the end of the day, if we are improving someone's quality of life dramatically and the patient's medical decision maker is willing to take on those risks, then we're really doing the patients a favor.

Dr Grouse: Now, another issue that you mentioned in your article, which I see a lot and often struggle with myself, is how and when to deprescribe certain types of medications such as cholinesterase inhibitors and memantine. Any tips or tricks to how to approach this?

Dr Weisbrod: My approach to this has also evolved a bit over the years. The new data that cholinesterase inhibitors may have a mortality benefit in patients with Alzheimer disease has changed my thinking a little bit. But there are still lots of situations where it's just too burdensome or patients seem to be having side effects. And so, I think about deprescribing. The most important thing in my mind is really thorough counseling before deprescribing with the patient's family and medical decision maker. I think that letting them know that we might actually be holding things more stable with the medication than we realize, there could be a flare-up, that we can resume the medication if that flare-up happens but we don't always guarantee getting back to the same point. I think having that conversation ahead of time will ward off some of the worst issues that you have afterwards. And then I think doing a taper of cholinesterase inhibitors over two weeks to a month is probably the most prudent because of some of the data about withdrawal and exacerbation of neuropsychiatric symptoms or cognitive worsening. Memantine, I think the data is a lot more shaky on withdrawal. And so, I think it's less important to gradually taper memantine. But I think that once again, just having the conversation upfront and letting the family know these are the things we have to look out for and these are the risks is going to be the most important.

Dr Grouse: That's really helpful and a great strategy to take advantage of. Another, I think, really difficult topic that I wanted to ask you about was the discussion around nutrition and whether or not to consider putting in some type of a permanent tube for tube feeds. How do you approach that conversation? Certainly a difficult one.

Dr Weisbrod: Yeah, I think it's easily one of the most difficult conversations to have in the care of patients who have dementia. And there's so much emotion in the families when they're having this discussion. And I think really acknowledging there's a huge emotional piece of the conversation is one key piece. For families and caregivers, they're thinking, I don't want my loved one to starve to death. That's usually the most important thing in their mind. We have to address that concern in the conversation, or they're never going to get to a point of satisfaction with the decision that's being made. So, I think while there is still some controversy in the literature about artificial nutrition for patients who have dementia, the bulk of data indicates that it is not helpful for patients. It may exacerbate dementia, it leads to more restraint. And so, I think unless there's some reversible medical condition that we're just trying to do artificial nutrition to get them through, like, they have a stroke and we're expecting that their dysphasia is going to improve because of the stroke is going to heal. Those situations might be a good reason, but if we really think that the driving factor behind their dysphasia is their dementia, I think we should be guiding the families away from that.

And I think that explaining that as dementia gets really advanced, the body is slowly shutting down. The body is not needing as much nutrition, and forcing more nutrition in has not been shown to help people who have dementia. Really putting it in that sort of language is going to help the families understand and be comfortable with that decision. I also think that it's really helpful to consider talking to families about what they can do and not have the entire conversation be about what we're not doing or not putting in a feeding tube for artificial nutrition. So, I think really good counseling about, we can do comfort feeding, we can expand what food we're giving the person who has dementia and really focus on foods that they really enjoy and not worry so much about the health and nutrition anymore. I think that focus on what they can take control of can also help make the decision easier for families.

Dr Grouse: I really like that approach. And I agree, it does seem that it being such an emotional decision with just so much a concern about this underlying feeling of not caring for their family member. I think that is a really great way to look at it and to kind of start off that conversation. Now, I'd love to hear more about what drew you to this field when you first got into your career as a neurologist.

Dr Weisbrod: I had an interesting journey to doing neuropalliative care. Definitely didn't know that's what I was going to do when I started neurology residency. At University of Rochester, we had amazing palliative care physicians that were involved in medical school, and so I got a little bit of exposure to it early on. Then when I was in neurology residency, I first of all realized that I really enjoyed making sure that what we were doing respected a patient's wishes. And so, as other people seemed to run away from those conversations, I was really drawn to them. And so that definitely made me realize that that might be more of the right field for me. But also, as I went through neurology residency, I really discovered that I love so many different things in neurology, and that made me not want to subspecialize and focus on a narrower set of conditions in neurology. So, doing palliative care fellowship was a really good way of getting a specialist tool set and expanding my knowledge in one area, but staying a neurologist, generalist. And I think it also really enhances a lot of the other things I do in neurology. It gives me a lot of additional skills on how to counsel patients and how to prepare for the future in general. I think there's a lot about just good bedside manner in palliative care education. I feel like it helped me become a better neurologist, and I decided that I really loved the palliative care piece as well.

Dr Grouse: Well, we're certainly all grateful that you found this aspect of your career and have been able to share the skills you've honed with us as well. And we really appreciate you taking the time to talk with us about your excellent article today, which I encourage everybody to read.

Dr Weisbrod: Yeah, thank you. It's been wonderful to be on, and I hope that people can take away a few small points from the article.

Dr Grouse: Again, today I've been interviewing Dr Neal Weisbrod about his article on neuropalliative care in dementia, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues, and thank you to our listeners for joining today.

Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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