Dementia Discussions
A monthly podcast about dementia. Join your host, Barbara Hament every 2nd Tuesday of the month, as she interviews medical professionals, caregivers, and various experts on how to better understand and cope with this challenging and complex disease.
Dementia Discussions
Navigating Dementia with Compassion and Clarity: A Candid Talk with Dr. Miriam Winthrop
Welcome back to Dementia Discussions! I’m so grateful to be back with you after a bit of a hiatus, and today’s episode is a truly meaningful one. I sit down with Dr. Miriam Winthrop, an adult and geriatric psychiatrist whose compassionate approach and wealth of knowledge make her a true gem in the dementia care world. We open up about the recent California fires that disrupted both our lives and how trauma and caregiving intersect, especially in these unpredictable times.
This conversation dives deep into the emotional, medical, and behavioral complexities of dementia. Dr. Winthrop shares how she supports individuals from the early signs of cognitive decline to the later stages of dementia, helping both patients and their families manage symptoms, medication, and caregiving strategies. Whether you’re navigating a new diagnosis or have been caregiving for years, this episode offers insight, validation, and practical tools for every step of the journey.
Timeline Summary
[1:33] – Introducing Dr. Miriam Winthrop and reconnecting after the LA fires
[6:37] – How patients find their way to a geriatric psychiatrist and the signs of prodromal dementia
[10:24] – The complexity of diagnosing mild cognitive impairment (MCI)
[15:43] – Understanding MCI, psychiatric symptoms, and the role of early treatment
[18:58] – Leqembi and considerations around early intervention and clinical trials
[21:28] – Aricept, Namenda, and their behavioral uses in dementia care
[28:15] – Behavioral challenges in moderate dementia and non-medication strategies
[31:39] – Communicating creatively with loved ones using the DARE method
[36:20] – What causes delirium and how to spot it in dementia patients
[40:19] – The emotional toll and shifting family dynamics in the middle to later stages
[45:41] – Acceptance, letting go of expectations, and redefining “normal”
[47:57] – Medication tapering and palliative care considerations in late-stage dementia
[51:57] – When hospice is involved and the importance of rational medication management
Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.
Let me see if I can remember it, dare D, A, R, E, don't argue, reason or explain. So that's our mantra. When she says there's a bunch of people in the house and they all want to spend the night and I don't have enough food, and she calls me on the phone confused. I say, oh, you know what? They all decided they're going to go out to a restaurant so you don't have to worry about making all those beds. What a relief. I think I'll come over and have dinner. Just let's just you and me have dinner tonight and let them go out and we just meet her now where she is.
Barbara Hament:Hello and welcome to season four of dementia discussions. I would really like to take a moment to thank the guests who were on this past year and to thank you the listener. I really could not do this show without you. And over the past couple of years, some of you have called me, so I'm encouraging more of you to pick up the phone and call me. I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232, or you can email me at dementia discussions.net so again, thank you. I'm grateful for you, and so looking forward to another year of us being together. Hello and welcome to dementia discussions, the podcast for and about caregivers today on the show, I would like to welcome Dr Miriam Winthrop. Dr Winthrop is an adult and geriatric psychiatrist, which means she treats just that the adult population and geriatrics, which is so great. And without further ado. Dr Winthrop, I am so happy to have you on the show. Thanks for being here. Really happy to be here. Ah, thank you. And so I know you just had an experience with the fires, and so did I. So I just wanted to start out with that, because in full transparency, here, I have not been recording for months. I haven't had a guest on the show in a long time, and I just wanted to explain why. And I'm bringing this up with you because I know you two had disruption in life because of the fire, and so our building burned down in the Palisades fire. And so that was super unsettling. And as you might imagine, like most other people in LA, we left with nothing, and had to get, like, completely, re, you know, reestablished. So took a good six months to do that, and so, and I know, so here I am back in action. But I just wanted to kind of let my community out there know where I've been. So tell me, I know you also were disrupted in the fire. What happened? Yeah. Barbara,
Dr. Miriam Winthrop:first, I want to say, you know, I'm, I really feel for you. I'm, it's such a profoundly disorienting experience, and it, it really has lasting repercussions. Everybody else moves on, but for you to become homeless, it's, it's something that you are continuing to deal with, you know, every time you reach for the can opener that you have to buy for the first time, or you think about a photo album, and it's, it's, you know, a wound that takes a long time to heal. Of many of my patients lost their homes, and it's something that we deal with every time we talk. So I really thank you. My really feel for you. Oh,
Barbara Hament:thank you. Yeah, it's so true. It's so true. Just so many things like you have to correct in your brain, you know, the exit off the freeway. Yeah, everything is new. So yeah, thank you. Yeah, for
Dr. Miriam Winthrop:us. We, we were fortunate. We were on the edge of the evacuation zone. And we, we chose to evacuate. We were, you know, in the optional zone. And but I have a an infant, and when we returned to our house, it was covered in ash. And we were renters, and we, you know, were right next door to a beautiful park that was also covered in ash, and we just made the decision, you know, the panic decision that we didn't feel comfortable, you know, and we're downwind of the heaviest burn area, and we were just freaking out about the idea of the remediation process and how do we clean our own house, and how do we keep it safe for our baby? And so we just decided, and our lease was up. Oh, so yeah, so we we relocated, and there was a you know, bit frantic we you. You know, we left with a suitcase. We had the ability to go back, but, you know, it was a few months of, you know, moving around, often with the support of my in laws, because our where our childcare was disrupted, but overall, it was a we felt fortunate to land on our feet. And you know, we were not in the situation where we lost everything. So it was, it was different for us. It was a stressful time, but, you know, we were definitely among the more fortunate.
Barbara Hament:Good for you. I'm, I'm happy to hear that, yeah, yeah. And now you've resettled elsewhere, yeah, in the long run, probably a really great thing for your family, I
Dr. Miriam Winthrop:think, ultimately a better thing. But you know, to your point, about the disorientation and finding your feed, you know, we experience just a small pace of that where we you know, the the panic and the not knowing what's next and having to make decisions in real time. But you know what you experienced, and what many of my patients experience, is that, but on a much larger scale, because the stakes are much, much higher, and, you know, just knowing what's going to come next, it really it does take a toll on your mental health.
Barbara Hament:Yeah, no, it definitely does. Um, there is some PTSD, you know, some post traumatic stress involved. So when I see smoke or smell even, even the hint of fire, I'm just Oh, on edge. So,
Dr. Miriam Winthrop:yeah, yeah, that's, that's pretty understandable.
Barbara Hament:Yeah, okay, so thank you for processing that with me for a little bit. I appreciate it. I really do. So let's talk about your work. This is like no brainer for you, because it's what you do every day. But as a geriatric psychiatrist, I mean, I think most people, well, maybe some people do. I could be wrong about this, but I think you're you might not be the first line user, right? Like people might not come to you right at the beginning of a dementia diagnosis. You know, oftentimes it's neurologists and scans and but I could be wrong about that, right? I mean, probably at the beginning, people who are first diagnosed, maybe who have some mild cognitive impairment, are depressed, and maybe yes, they Yeah, they come to see you, yeah, as they're experiencing, as they realize, like, maybe they have some insight that they're not as sharp as they used to be.
Dr. Miriam Winthrop:Yeah, it's interesting. I really do see people present in all different stages. And it is, it's, it's always interesting to me how people find their way to my door. But it divides into two camps. There are the people who are in the earlier stages, who are presenting with primarily psychiatric symptoms, and we refer to those people as prodromal. It's commonly understood that in many cases, the first sign of dementia is a depression or it's a new psychiatric symptom, even something like anxiety. In rare cases, you can see something like a new OCD. And I do see cases like that, and in situations like that. Maybe this a person's spouse or they themselves have are noticing that they're they're not as sharp. They're having some trouble with word finding or with losing items. But it's, it's not the thing that first comes to mind. It's not the thing that they're really worried about, or what they're coming to talk to me about, and I do a thorough evaluation, and I will often have my suspicions when I first meet somebody that they might be fitting a prodromal picture. I don't communicate it to them in that way, because, to be perfectly honest, there's no way to know which direction their case is going to go. And you can have cognitive symptoms with a primary psychiatric disorder like depression. It can, it can truly just be a depression. And in those cases, the answer reveals itself over time and with careful monitoring. And I just really keep my ears perked up and my eyes open in terms of watching for developments and knowing where to direct that person in terms of management. The other broad group of people are, you know, they have received a dementia diagnosis, you know, maybe a couple of years back, and they are now developing significant behavioral issues or apathy, and the neurologist is looking to bring someone else on board to assist with management. I find in those cases that a neurologist, especially a behavioral neurologist, or someone who specializes specializes in dementia, would be fully care. Capable of doing what I do in those circumstances. The reason why they don't, if that they don't want to, they don't have the time, or they choose not to make the time, or they don't prioritize family education, or, you know, doing an in depth assessment of behaviors at home. And that's really where I step in.
Barbara Hament:That's so interesting. Okay, so just going back to that first, the pre dromal. Is that how, what you said, prodromal prodrome so the prodromal so just going back to that group of people. So what I'm hearing you say and tell me if this is right or wrong. So if you're let's say you're depressed or anxious. You could have a little bit of forgetfulness with that doesn't necessarily mean you have mild cognitive impairment. It doesn't right. It could like, you're saying, just be a depression anxiety, or like, OCD, yeah. I mean, I would imagine, if you're starting to have some forgetfulness, your OCD is maybe like little pieces of paper with things that you're writing to remember.
Dr. Miriam Winthrop:Yeah, so with patients who could be prodromal, history is really important, and a real red flag for me is someone who's never been depressed before, or was never anxious before, and then there truly is just the development of a really new psychiatric symptom in the absence of prior history. That's something, while it's not a smoking gun, that's something that will cause me to watch somebody much more closely and to be a little bit more rigorous in the cognitive assessment that I perform, even if they're not necessarily complaining of, you know, cognitive issues. Conversely, you know, it's, I mean, as a geriatric psychiatrist, something I'm always thinking about. But if somebody has a long history of recurrent depression, and they're getting older, they're in the midst of a severe depressive episode, and they're really complaining about cognitive issues. I really keep an open mind, and my focus is on trying to get the depressive episode under control first before I would really think about even referring them for in depth neurocognitive testing, you know, or or ordering imaging, because there is such a thing called, I mean, we this is a clinical term that's kind of falling out of favor, but it's still used, and that's pseudo dementia, which is basically, you know, cognitive impairment is a core symptom of a significant depression. So you really cannot make a accurate assessment if someone is severely depressed,
Barbara Hament:yeah, that makes sense. I mean, I think we all know if we're super anxious or super unhappy, right? We're having trouble thinking straight. Your brain doesn't work very Right, exactly, yeah. So yeah. And
Dr. Miriam Winthrop:a common thing that I hear, you know, something that is really, really disturbs people, is, you know, and I hear this maybe on a daily basis, I walk into a room and I don't remember why I walked into that room, right? And that's actually not a memory issue. That's an attentional issue. And attention is a cognitive domain. It can be impacted in dementia, but it's really impacted in anxiety, and it's also really impacted in depression. So if you're stressed and you're anxious and you walk into a room and you can't remember why you got there, that's because you, frankly, you weren't paying attention in the first place.
Barbara Hament:Okay, so not necessarily a dementia, yeah, right, not the beginning. It could. It's possible. It's really not the beginnings of anything, yeah, just, you just need to attend a little bit a little closer. Okay, good to know. So let's say people come to you and you're keeping a close eye, and you do think they're, you know, maybe struggling a little bit more with word finding or forgetting your appointments, or, I don't know, you know you are starting to see things that are like, Hmm, looks like some true forgetfulness. Are you then, like you're saying referring to the neurologist or referring for the scans or the test
Dr. Miriam Winthrop:now, yeah, now that I am in private practice, I tend to refer out for those things instead of handling them myself. Though, now that I've moved to a small town and there are a few neurologists available, I've started actually handling more workup on my own, again, even though it's just kind of, it's, it's just an extra chore in some ways. But I think what the topic that you're raising is this diagnosis of MCI, or mild cognitive impairment, which is a confusing one for a lot of people and for clinicians too. It's a frustrating concept because it doesn't mean that much. Mild cognitive impairment is the bucket term that you apply to someone who is reporting. Functional changes, but they still perform well on cognitive screen. Or they're they're describing some difficulty, but they're able to functionally compensate. You know, it's the issue is noticeable, but it hasn't risen to the point of a a real problem. And the
Barbara Hament:reason why, exactly right. I mean, you're hitting it on the head, right? Like, for people who are super smart, they're doing well on the testing right there, but maybe they're like, their spouse is noticing a change no one else is really noticing, and the spouse is maybe going to the doctor saying, but it's not showing up, right?
Dr. Miriam Winthrop:Yeah, not showing up. And MCI is a troublesome category because it's so imprecise, and because 50% of people who qualify for a diagnosis of MCI do not progress to dementia. So and the reason that is, is that there are lots of things that impact cognition. Many of them are reversible, so, you know, and a number of common causes that might slow you down and cause you to be foggy or or, you know, less alert, you know, less able to to feel on top of your bills like psychiatric complaints are a main one, but also a whole host of medical issues. You know, if you are if you have poorly controlled diabetes, if your blood pressure is out of control, that can actually impact your cognition. You know, if you've been sick recently, if you have a vitamin deficiency, there are a whole host of explanations for why someone might be feeling slowed down or might be noticing cognitive change that are not a neurodegenerative disorder, and only half of those people who do get that diagnosis Do progress to a neurodegenerative disorder. So you enter a sort of a tricky it's a tricky category, and it's a little bit of limbo, because you have to counsel people about that 50% statistic, which is a frightening one, while also trying to empower while also trying to address any reversible causes and empowering them to take as many brain protective measures as they can, including, you know, cleaning up their diet. You know, starting to exercise more. You know, anything that's good for your vascular or cardiac health is good for your brain. So for a lot of those people, if they're not already seeing a cardiologist, I I try to get them connected to one, and again, just post monitoring right? My algorithm for handling MCI has changed a little bit with the arrival of Le. Can be the they you know, amyloid antibody infusion, because that is more effective early in disease course, and now we have a blood test that, you know, can it helps with the the diagnosis of Alzheimer's. So being a more aggressive earlier on in terms of diagnostic workup is in a patient's best interest, because they may be a candidate for one of these, you know, the infusion, the infusion. But again, it's highly case dependent. And I do go with, you know, sort of my, my clinical suspicion of whether or not something is feeling like early Alzheimer's relative to, you know, something else going on.
Barbara Hament:Wow. Okay, so I guess generally you would say, if someone is diagnosed with a dementia, maybe seek out clinical trials, some of them,
Dr. Miriam Winthrop:yeah, there. I mean, I do have mixed feelings about le can be just from the standpoint of access, and it's hard. You know, coming in for an infusion is a logistical barrier, and it has to be a certain type of patient with a, you know, a certain socio economic milieu, to be perfectly blunt, who is able to rearrange their life and have the family support and qualify for for the treatment, and I don't, I mean, since the
Barbara Hament:side effects and the
Dr. Miriam Winthrop:and the So, yeah, they are serious. Obviously, they're not as concerning for like can be as they were for the first one, which should never, I'm honestly, I'm blanking on its name, and it should never have been approved for for by the FDA. But
Barbara Hament:listen, I've never sorry. Is it still brain bleed or Yeah? Aria, swelling.
Dr. Miriam Winthrop:Yeah. Aria, what does that say? Again? Amyloid related image. Abnormalities. It's and no joke. I mean, the risks are real. So it's, you know, with the arrival of the can be, it has made me a little bit more proactive and being aggressive about workup earlier on, because the infusion is most beneficial earlier in the disease course. So you need to catch the disease earlier in the disease course. That being said, that still applies to minority of people, and the benefits of the infusion are still, I mean, while they're more impressive than say, Aricept or Namenda, they're still relatively modest in the grand scheme of things. And oftentimes the you know, the logistical barriers and potential risks of the infusion like outweigh the potential benefits. So it's still a relatively small number of people that I would push in that direction.
Barbara Hament:Yeah, agreed. And actually, the two patients, the two clients that I've had, it did not work out for one reason or another, yeah. So I get that I have yet to see a client who actually successfully gets on the can be and, you know, and demonstrate, yeah, yeah. I would love to see that, of course. Yeah. So you, you brought up Aricept and Amanda. So let's chat about that for a minute here, sure what so are you prescribing Aricept and Amanda? I mean, those are routinely, yeah. You are
Dr. Miriam Winthrop:Yeah, routinely. And, you know, my feelings about them are mixed. They the benefit is modest by some metrics. As as many as 50% of people don't show any benefit. And for those that do, again, we're talking about pretty modest benefits in terms of slowing the rate of cognitive decline. And the statistic that a lot of people trot out is that it will delay admission to a nursing home by, you know, six or seven months over the course of the entire illness. Well, what does that mean? Like, nothing, right? And
Barbara Hament:how do you know, like, how do you know, slowing the progression? Yeah, you know, it's hard to measure, like, slowing the rate of cognitive decline, like that. It's hard for families to it is know that that's happening, right? Yeah,
Dr. Miriam Winthrop:families see nothing, I think, that it probably does in a modest way, to be perfectly honest, the benefits from an agent like done, Bazil and acetylcholinesterase inhibitor are often behavioral. It can help in Parkinson's related dementias with behavioral problems. It can help with behavioral problems and Alzheimer's. I do notice tangible benefits there.
Barbara Hament:Oh, so chat about that, like, which behavior specifically are you thinking about? Agitation?
Dr. Miriam Winthrop:Sometimes apathy, and in Parkinson's related dementias, sometimes it can help with the agitation associated with psychosis. So you know, when I am approached to manage a situation where, you know, psychosis and agitation is a problem and a dementia and it's medically appropriate to try it and they're not already on Donepezil, I will usually try to deny before I would try an
Barbara Hament:antipsychotic. So that's Aricept. Yeah, good to know. Yeah, right. So Aricept, instead of, like, a Seroquel, yeah, right. Seems like a, I don't know, may help, I mean, it may help side effects.
Dr. Miriam Winthrop:Yeah, there are, you know, there's a lot not to like about Seroquel, but I you know, if it's mild to moderate, and we're looking at, you know, using a medication to target those symptoms, I will, and it's not already on board, I will try it. There are situations in which I bypass it completely because the symptoms are just too severe. But, you know, I think it is a, it's a beneficial tool. From that perspective, I
Barbara Hament:see, okay, yeah, it sounds like it better than you're right, better than antipsychotic, yeah, and if it helps, great.
Dr. Miriam Winthrop:It does have side effects. Done episode does have side effects. It does cause diarrhea, it causes nausea. I call it can slow your heart rate. That's a serious one that I pay attention to. It's not, you know, it can cause weight loss. It's not, it's not benign. But, you know, none of these medications are a lot. It's, you know, it's a lot of cost benefit. So would
Barbara Hament:you say Exelon, the Exelon patch instead? Would do try that if people are having a lot of Gi Yeah, stress,
Dr. Miriam Winthrop:the patch is often better for GI distress. That's rivastigmine. Yeah? Yeah, and rivastigmine, it has a special FDA approval for dementia associated with Parkinson's that the others do not. But that doesn't really concern me too much. I mean, I would use, I would pretty much use dinapecial and rivastigmine interchangeably, with the exception of the fact that you can
Barbara Hament:get the patch. So that's encouraging. I mean, because I know most doctors still use Aricept and dementia, Aricept and Amanda, and I sometimes wonder why, like, is that giving families a false sense of hope? But maybe,
Dr. Miriam Winthrop:and it can. And I'm very I'm very blunt with my families about the limitations of these medications. And the fact is, it's better than nothing, unless there's a reason not to use it, and there are plenty of reasons. Like, you know, if someone's medically frail, you know, I wouldn't. I have families who are who push so hard to get these medications on board, and it just does not make sense. Mementine, that's Namenda, does work synergistically with Donepezil or any acetylcholinesterase inhibitor, they're better together, and especially once you reach the moderate stage. I do not start out with Memantine early in the disease course, because there's no evidence that it makes things better if you start at the MCI stage, and that's a pet peeve of mine. I in the community, I will encounter people who have a diagnosis of MCI. It is not clear that they will progress to a dementia, and they have been on Donepezil and Memantine, or that's Aricept and Namenda for a couple years, and it's, does, it's, it's not clinically indicated. The the research demonstrates that there's not, there's not benefit to starting those medications at the MCI stage, if it's truly MCI. I mean, if you dementia, make the diagnosis, then start the medication,
Barbara Hament:right? But no need to start the medication before the diagnosis. Yeah, that's a pet peeve of mine, understandably. So if it, if it has no clinical benefit,
Dr. Miriam Winthrop:you're, I mean, you're just signing yourself up for side effects, right?
Barbara Hament:Signing yourself up for side effects. No one wants that. No, no. So you're going talking about now middle stages. And you're right, like, most of my clients have many more behavioral problems in the middle, oftentimes right in the middle stages. So maybe we should just chat about that. Like, what are I'm sure a lot of families come to you in distress, right? Their spouse, their parent, super agitated. They're suspicious, paranoid, they're having hallucinations, you know, all sorts of things, right? They're aggressive. So in those situations, what are you what's your thought? So, my role is sort of multi, multi pronged. Medication is often warranted and necessary, and it is a useful tool.
Dr. Miriam Winthrop:I never start there unless somebody comes to me and it's like severe aggression. You know, we're not playing around here. We need to get this taken care of fast. But in the majority of cases, before leaping to medication immediately, I really try to understand the context. I really try to understand the behaviors, and I will often try to connect families to someone like yourself, you know, someone who I can partner with to provide counseling and education and most importantly, coaching about how to if the if a patient's at home, how to create a home environment that is conducive to harmony, and that does not promote unwanted behaviors and how to communicate with an individual who has dementia, because that is a really tough one for many families to wrap their heads around. The fact that you can't convince someone with dementia that you shouldn't be arguing with them, that there there is no, you know reasoning with them and can and convincing them to do something, you have to embrace an entirely new way of guiding and communicating. And it's a skill. It's something that you have to learn. And while i i and I don't always have time to do as much as I need to in our in our clinical encounters, because I'm focusing on so you know, all the other medical components and and all the different pieces of the puzzle. And so having someone like you on board, who can continue the conversation, and who can give families tools to. To address situations before they happen, understanding what the triggers are. You know, there's so many triggers around bathing, around clothing changes, around hygiene, around cooking, around functional independence, and many of those things can be sidestepped. And families have an inherent discomfort around doing things that they feel like are misleading or deceptive, they're like, Oh yeah, I'm, I'm fooling her by, you know, doing this thing that you're telling me to do. And it's, it's not the right way to think about it. You really have to think about it from the terms, in utilitarian terms, which are that, like, you know, whatever results in the best outcome, and even if that means not being completely honest to your mom, with your mom all the time, like that is the right thing to do, because
Barbara Hament:we talk about this all the time in support group, and it's just, it goes against the grain. It goes against everyone's grain, right? Like I'm telling you to to, you know, create a story to your own spouse. Lie, lie to your spouse you've been with for, you know, 3040, 50 years like that just goes against the grain, right? Yeah, this is the person you've been honest with your whole, you know, marriage. So, yeah, it's really, it takes a lot of time to for that to sink in, yeah, you know, to show the benefit of, you know, you can call it whatever you want. I call it creativity. You know, if people have a hard time with lying, you know, just being creative, right? Like you don't, another thing we talk about in support group is dare, don't argue reason or explain like it's and that's so super hard to do,
Dr. Miriam Winthrop:really hard. It's really hard. So a lot of I tried to optimize from that standpoint. And again, this is a lot of conversations that a neurologist could also have, but they just don't. And because the truth is, nothing medication wise, nothing comes for free, and especially when we're talking about the medications that are aimed at controlling behavior in older adults who have other medical problems. You're always running up against, you know, the risk of polypharmacy, of, you know, adding additional medication that interacts with other medication and creating further problems. So I, by training and by nature, I am very conservative with medication, and often can improve a situation by removing medication that might be worsening behaviors. You know, an example is like I and again, this is not always generalizable, because every patient is unique. But, you know, I had a patient who was really fixated on going home to live with her parents. She had, she was at the stage where she couldn't, didn't remember her husband, or sometimes remembered him, didn't recognize their apartment. Wanted to go home to be with her parents, who, of course, had been deceased for decades. And, you know, getting her husband to get to the point where he understood he can't, don't tell her, her parents are dead, right? And don't tell her she can't go. Don't tell her this is her home. That's a completely bewildering response, that's terrifying. And, you know, he wanted to use medication to calm her down. And I said, Well, let's try like you know, can we find a little suitcase? And when she asked to go home. You say, Well, okay, here's the suitcase. Why don't you start packing? There's some chores that we need to get to, and then we'll talk about, you know, what we need to do to plan the trip. And inevitably, like that was distracting enough. She got absorbed in the task. And then, and then it was lunchtime. And then, right? You know, she
Barbara Hament:forgot all about it. Forgot all
Dr. Miriam Winthrop:about it so we were able to minimize medications using, you know, that kind of approach. But those approaches fail. They fail plenty, not at that point it is appropriate to turn towards medication, and I've had some real success stories with low dose medications that do pose real risks, but the outcome was honestly better than I was hoping for in terms of just lowering the baseline agitation and and making patients feel more comfortable.
Barbara Hament:So like low dose antipsychotics or low dose agitation analytics, antipsychotics got it?
Dr. Miriam Winthrop:Uh huh. I almost never use anxiolytics like benzodiazepine, like Ativan or Xanax or Klonopin. In elderly patients with dementia, they have a nasty habit of causing paradoxical agitation, and it's a crapshoot. You know, at in the best case scenario, you're just sedating somebody, but the sedation comes with a significant increase in fall risk. You're acutely lowering their cognitive status, so you're making them more demented and and once in a while, they'll erupt on you. It won't, it won't calm them down at all. So not a good proposition. Medication. They're not medications I use in this population, no, rarely in the hospice setting, but very, very, very rarely. The other thing to know about benzodiazepines is that when you have dementia and you're old and you have a number of other medical problems, you are always at risk of delirious, of developing a delirium. And delirium is basically an acute encephalopathy or acute dysfunction in your brain that's different from your baseline level of functioning, and it is brought on by usually, a medical problem. And that medical problem could be as simple as constipation can cause it. And when you are delirious, you will become you can become more agitated, you can become more withdrawn. You can have, you know, a hyperactive delirium, where you're running around, you're aggressive, you're hostile, you're hallucinating. You can have a hypoactive delirium, where you just stop responding to the outside environment. It's really not a good thing for your brain. And anyone who has dementia is at much, much higher risk. And once you develop a delirium, it can kind of be hard to unring that bell. You kind of can kick off a cascade of events in which you suffer a really significant decline over a short period of time. And what
Barbara Hament:other What else can cause a delay, like things like a UTI, things like an infect, like the flu, like
Dr. Miriam Winthrop:flu, a viral cold, dehydration, the wrong combination of medications, benzodiazepines, alcohol, most things can cause delirium. And if you're a vulnerable individual,
Barbara Hament:and does this go like when they talk about a hospital delirium, like, if you're in the hospital, you're, this is the same sort of thing. Yeah,
Dr. Miriam Winthrop:exactly the same. It is more likely to happen much, much more likely to happen in the hospital. It's, it's always multifactorial, and it has to do with a disruption to the centers in your brain that control around arousal, alertness, awakeness, and when you're in you're disoriented because your environment is different and your sleep is disrupted, which is what happens in the hospital. It's like, you know, the perfect storm, but it can happen at
Barbara Hament:home, so like suddenly, if you think the nurses are poisoning, you sort of things.
Dr. Miriam Winthrop:If you see a sudden change in behavior that's really abrupt, or you see fluctuations where over the course of a day, your mother is really hostile, really paranoid, and then she's really withdrawn, and then later she's really hostile again, and that's different from the way that things were before. That is bit of a smoking gun for delirium. And the first step every time I see and I see this all the time, I will be seeing somebody over zoom, and the son or daughter or the caregiver will be like, Yeah, you know, the past two days, things have been crazy, and I'm looking at the patient, and they're not even, they're not looking at me. They're not, it doesn't look like anybody's home. I just, you stop and I say, you need to go to urgent care to get labs and to get it, you know, urine test. You know, this needs to be worked up, because usually
Barbara Hament:it's a medical cause, okay? So not like worsening of their dementia or their Alzheimer's is really gradual, so it doesn't, yeah, right,
Dr. Miriam Winthrop:there's not. It should be acute. So if you it's really the the giveaway is that it's a sudden change.
Barbara Hament:Yeah, and you know, something's something different is going on, and go get it checked out. Yeah, good, really, good point. Yeah. So, okay, so you're talking about Middle State, right, moderate, middle stages of dementia, and what can come up? And that's certainly something that comes up often. And I guess I'm trying to think of other things that come up during, like, a lot of not recognizing your spouse, like what you were saying, The going home, not recognizing your home, trying to think
Dr. Miriam Winthrop:of for families the middle stage, or, you know, the later, the later half of moderate and we characterize severe Dementia as, like, not very responsive, like, completely dependent. But in the later half of moderate, there's, there are some big shifts that tend to occur in the family system, even in early moderate. You know, when someone is significantly impaired, there may be there. There are frequently remnants of the self. You know, the the person still feels like the person, and even though they need a ton of they need a ton of help, and the rhythms of of life are fundamentally different. Sometimes relationships remain. Intact there are. You can enjoy moments of connection. You know, regardless of whether your mom knows what month it is, they're still there's still the potential there for the preservation of an emotional dynamic,
Barbara Hament:right, like you could sit together and go through an a photo album, right? And
Dr. Miriam Winthrop:in the later half of moderate, those start to become those relationships start to become fundamentally disrupted, and that's where it's almost like a new phase of grief for family, because not only are you really confronted with the absence of the person that you loved in in many different respects, but you can be challenged by some, some pretty difficult behaviors, like, you know, you know, and behaviors that feel almost like acting out. And it's at this stage where I use a lot of analogies in terms of brain and behavior, describing the developmental trajectory of a toddler, and it's easier for, and I actually find it's much easier for people who have been parents to understand and not take it personally what they're seeing. Because, you know, we do see the the loss of inhibitory centers in the brain, and in later stages, regardless of dementia type, you do get more frontal involvement, and you can see much more erratic behavior, or, you know, baffling behavior, or setting behavior. And that is an it's a new type of difficult for people. And so at that stage, a lot of what I find myself doing is, you know, counseling to family and talking them through what they're seeing and helping them understand it in neuroanatomical terms that can be comforting to people. And again, I do frequently use the analogy, though it can be insulting to people, and I always give the caveat advance them that I This may sound insulting. You know your your wife is still an adult, but it can be useful to apply this paradigm of thinking like about a toddler brain and toddlers, certain parts of their brain are already wired up and raring to go, and other parts of their brain are so far behind. And this is what you're seeing with your wife or your husband or your mom, where you know the different parts of the brain are not functioning in harmony, and there are there. There's asymmetry in which areas are more damaged relative to which areas are preserved. And you can what that produces is really erratic behavior that can be maddening. Like, you know, you try to guide your husband to use the toilet, and he looks you right in the face, drops trow and pees all over the floor, all
Barbara Hament:right? I was just going to talk about that, yeah, the bathroom, hygiene, incontinence, yeah, so, or like, taking food off of, you know, the next person's plate kind of thing, yeah, yeah. So maddening.
Dr. Miriam Winthrop:And if you're really thinking about the person in front of you in terms of who they were before, it is much, much more difficult. So helping families to get to a stage where they're now viewing the person in front of them in different terms can really help everyone to cope. I don't
Barbara Hament:usually bring up the toddler. I mean, you're right to most people take kindly to that. Are they? Are they do?
Dr. Miriam Winthrop:Because I really, I before people get offended, I say, this is gonna sound bad. I'm not. I'm really not. I'm not saying that your wife is a toddler, but I want to talk a little bit about what a toddler brain looks like, because there are concepts there that are useful for us, interesting and people actually it does resonate because, especially for parents, because they can relate to that feeling of being so frustrated with a toddler, but also having to hold on to the fact that it's not this person's fault, and this doesn't make sense, because the brain in front of me doesn't make sense, and if you imagine the brain of an individual affected by dementia developing in reverse, then that can provide some rhyme and reason to something that feels inherently chaotic and difficult to understand.
Barbara Hament:Yeah, it's exactly and where which we talk about in group all the time, certainly with clients, is like the normal, the new normal changes all the time. So you know, one day you're right, like they might be able. To go to the bathroom, and then the next day, no or the next hour. You know what I mean, like, you just never know where a person
Dr. Miriam Winthrop:is going to be. Is it right? Yeah. And that is another reason why I like that analogy, because, especially for people who have been parents and remember that time, that feeling of just the brain constantly changing over time and not knowing what you're going to get day to day. That's something that they can really identify with, and it's an experience that they can draw on. And because so so much of the issue often with caregivers and family members is that they difficulty letting go of their expectations and difficulty letting go of the brain they knew and,
Barbara Hament:yeah, absolutely not that brain. Yeah, difficulty, letting go of expectations exactly, and acceptance, like we talk about, yeah, the a word, it's the a word is not Alzheimer's, it's acceptance, yeah, yeah, accepting where your parent or spouse is so hard, so hard. Oh my gosh. I was with a couple yesterday. The wife has dementia, and the husband was yelling at like, yeah, don't yell at her. She doesn't remember. She keeps asking where the keys are, because she has she doesn't remember they're in her purse. She you know. So it's yeah, it's so hard. Okay, all right, so, so moving on. It sounds like you're, you know, you probably pick up with families, maybe at the beginning and the middle, so towards, kind of the end, you know, the later stages, the end stage of dementia, would you say? And you touched on this a little bit, pulling back on some of the medications, like at the end stages, is that, do you see that quite often you're stopping some of these myths.
Dr. Miriam Winthrop:It is often the case that the stuff that was really tough in the middle or the late Middle gets better towards the end. And the reason why is that as there's progressive damage to different centers in the brain, you know, the circuits that were driving those behaviors are no longer functioning the way that they were, and so agitation can get a lot better. Sometimes psychosis goes away entirely. And I always, once I achieve a period of stability with patients like, you know, I, let's say you have a patient and there were really difficult behaviors over, like a three month stretch, and finally, we get things, you know, to a better place with medication. If things stay good for a period of, like six months, then I will start talking about pulling back the dose to see what happens, because it's possible that the again, no longer the same brain we may not need those medications anymore, and certainly in late, late stages, the less the better, because the more medications you have on board. It's often the case that you're just going to hasten death.
Barbara Hament:So when a person is like bed bound, really not on any sort of schedule, day, night, they're mostly sleeping, I suppose, and not really eating at this point, or eating very little, or, you know, pureed diet or something. There's no reason to give some of the medications now,
Dr. Miriam Winthrop:the only reason that I would is if I have some indication that the patient uncomfortable, the patient's anxious at throughout the process, my North Star is always optimization of quality of life for everybody involved, but first and foremost for The patient. And you know, in the later stages, I throw out plenty of rules because, you know, we're not trying to extend the life. We're trying to make the patient feel physically and and emotionally as comfortable as possible, and in service of that. You know, sometimes less is more, but sometimes you do need medication. You know, if there's, if you know patients whimpering, or there's some, you have some idea that the patient feels afraid, the patient's flinching away, you know, you medication might still be warranted, but it's, you know, it's very case by case, and definitely, like, things should not be left on just because they've been on Right,
Barbara Hament:right, because they've always taken that, yeah, and that could go for so many. Like, I've seen people come off of their cholesterol medicine. Because, like, why are we treating are we checking labs for cholesterol at this point? No, yeah. I even saw a person come off their thyroid medication. Because, yeah, the doctor said we're not checking thyroid levels anymore, either. So I hadn't thought about that.
Dr. Miriam Winthrop:The that one is a tricky one, because the thyroid can you know if your thyroid either plummets or, you know, your hyperthyroid, though, typically, that's, that's, that's less likely you can experience some psychiatric sequelae from outer consequences. From that, and you could become delirious. So I would probably, you know, assuming it's a reasonable dose, I would probably, that's something I would probably continue, but yeah, for things like, things like cholesterol, it's like, not this, you know, these are medications that you take to, you know, prevent a heart attack in 15 years from now. We're not talking 15 years from now, right? So it doesn't make a lot of sense. So yeah, just being rational about what medications are on board at that stage my role, I often step away at that role from direct patient care, and I often, you know, will pass the torch to hospice. I often. I will still, I will continue to work with family members, you know, on processing their experiences. But my role often shifts at that stage. I will periodically become re involved when I worked with somebody in the past, and the patient's now in hospice, and the family sort of calls me up, and they're like, we're concerned about the medications here, and this doesn't feel right. And, you know, because it's true that even in hospice, like, there's a lot of variation in quality of providers and in training and in oversight, you know, it's not a it's a field that's underserved, and so the physician may not be having eyes on the patient at regular intervals. Or it might be a mid level practitioner, like a nurse practitioner, who just doesn't have the same training in geriatrics. Or, you know, there are lots of different explanations, but, you know, I will sometimes come back into a case and a patient's on like, a crazy amount of medication, and that's been recently added, and sometimes that requires a little bit of course correction, but then you turn them back away again.
Barbara Hament:Got it? That makes sense? Yeah, especially if hospice is involved, and yeah, yeah, cuz they're,
Dr. Miriam Winthrop:they're liberal, but by design, they should be. But sometimes, you know, it's a it's a balance, like you should be liberal, you should be willing to do what it takes to make the patient comfortable, but you can make things worse. So that's an important principle
Barbara Hament:to remember, yeah. And so you can be consulted on in these situations. Great, great to know. Okay, well, gosh, I so appreciate you. I can't think of any other questions. Certainly, if there are new developments, anything in the pipeline you want to talk about here on the show, I'm happy to have you back. You know, if you see anything in the works? Please tell us about the educate us. Educate me. Really happy to have you here today, and would love to have you back in the future.
Dr. Miriam Winthrop:So thank you. Really enjoyed it. I'd be happy to come back anytime. Thank you so much.
Barbara Hament:Thank you for joining us today on another episode of dementia discussions. If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310-362-8232, or go to dementia discussions.net. Forward, slash contact, and let me know, I would love to have you remember that you can follow dementia discussions on Apple podcasts, Spotify, Google podcasts and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review for any other information about this podcast, please visit me@dementiadiscussions.net and please share this podcast with someone you know, if you think it may help. Thanks again for listening, and I'll see you here again next time on dementia discussions. You