"A light that is slowly going to turn off." - Dementia (Geriatric Series Part II)

In our final episode of the Geriatric series, Dr. Xu and Drs. Ouellets discuss how to  manage neurocognitive disorders in elderly patients. Daniel facilitates the conversation with a sweet couple navigating these challenges.

=== Outline ===

Chapter 1: An Unexpected Diagnosis

Chapter 2: Diagnosing Dementia

Chapter 3: Dementia Treatment and Specialist Care

Chapter 4: Supporting Caregivers

=== Learning Points ===

1. Dementia is characterized by both functional and cognitive impairment. While it’s important to consider a broad differential, it’s not strictly necessary to rule out all causes of impairment before proceeding with assessment for dementia. 
2. Once a diagnosis of dementia has been made, there are certain components of long-term care to be addressed. This is where referral to a geriatrician can be helpful, as they can help to connect patients with resources and help to provide long-term counseling. 
3. As dementia progresses, behavioral issues in patients may emerge. It’s important to gather as much information about the context of these issues as possible, in order to think about non-pharmacologic solutions and interventions. 
4. Maintain a high index of suspicion for caregiver burnout, and try to determine what resources a caregiver needs and/or if they are willing to accept help.

=== Our Expert(s) ===

Dr. Gregory Ouellet graduated from Brown University in Providence, RI with a Bachelor of Science in biology and then attended medical school at the University of Rochester. Dr. Jennifer Ouellet is a geriatrician who specializes in the care of older adults with multiple chronic illnesses. They completed their clinical training in Internal Medicine and Geriatrics at Yale and are currently full time faculty in the Section of Geriatrics.

=== References ===

1. Albrecht T, Schroeder M, LeCaire T, Endicott S, Marschall K, Felten K, Sayavedra N, Russmann S, Kern V, Blazek MC, Kales HC, Carlsson CM, Mahoney J, Walaszek A. Training dementia care professionals to help caregivers improve the management of behavioral and psychological symptoms of dementia using the DICE Approach: A pilot study. Geriatr Nurs. 2022 Nov-Dec;48:74-79. doi: 10.1016/j.gerinurse.2022.08.016. Epub 2022 Sep 22. PMID: 36155312; PMCID: PMC11881159.
2. Mehrani I, Sachdev PS. The role of Memory Clinics in the assessment and management of dementia, now and into the future. Curr Opin Psychiatry. 2022 Mar 1;35(2):118-122. doi: 10.1097/YCO.0000000000000777. PMID: 35026801.
3. Reuben DB, Romero T, Evertson LC, Jennings LA. Overwhelmed: a Dementia Caregiver Vital Sign. J Gen Intern Med. 2022 Aug;37(10):2469-2474. doi: 10.1007/s11606-021-07054-3. Epub 2021 Aug 13. PMID: 34389938; PMCID: PMC9360256.
4. van Dyck CH, Swanson CJ, Aisen P, Bateman RJ, Chen C, Gee M, Kanekiyo M, Li D, Reyderman L, Cohen S, Froelich L, Katayama S, Sabbagh M, Vellas B, Watson D, Dhadda S, Irizarry M, Kramer LD, Iwatsubo T. Lecanemab in Early Alzheimer's Disease. N Engl J Med. 2023 Jan 5;388(1):9-21. doi: 10.1056/NEJMoa2212948. Epub 2022 Nov 29. PMID: 36449413.

=== About Us ===

The Primary Care Pearls (PCP) Podcast is created in collaboration with faculty, residents, and students from the Department of Internal Medicine at the Yale School of Medicine. The project aims to create accessible and informative podcasts about core primary care topics centered around real patient stories. 

Hosts: Helen Cai

Producers: Helen Cai, Josh Onyango, Daniel Wang

Logo and Name: Eva Zimmerman

Theme music and Editing: Helen Cai, Josh Onyango

Other background music: True Cuckoo, Asher Fulero, Dan Bodan, Ammil, Dan Bodan

Instagram: @pcpearls

Twitter: @PCarePearls

Listen on your favorite podcast platforms: linktr.ee/pcpearls

Transcript

Dementia Episode (Geriatrics II)

Host: Hi, welcome to Primary Care Pearls: a podcast made by learners, for learners. Today:

 MaryLee: This is what I am right now and it will continue, that I know. So I'm accepting everything that's going on now as this is what it is and this is what it will be.

Gennaro: To me was just thinking about an oil lantern, a light that slowly is gonna turn off.

Host: We’re talking about Dementia, a syndrome characterized by a progressive and gradual loss of brain function affecting an individual’s memory, thinking, and behavior. During our discussion, we’ll be joined by Mary Lee, a patient living with dementia​

MaryLee: My name is Mary Lee

Host: And her husband, Gennaro.

Gennaro: I am Genero DeGennaro, caregiver for Mary Lee DeGennaro, my wife.

Host: We’ll learn more about her experience receiving a diagnosis of Dementia. 

We’ll also be joined by our faculty experts, Drs. Jen and Greg Ouellet.

Jen Ouellet: My name is Jen Ouellet. I'm a geriatrician and clinician educator from Rhode Island initially and then trained in Rochester and then here for residency. And my focus has been helping health professionals and health professional trainees learn how to align decision making for older adults with what matters most to them.

Greg Ouellet: And I'm Greg Ouellet. I also grew up in Rhode Island. Jen and I have known each other since college. Trained in Rochester for medical school and then came to Yale for residency and for training in geriatrics. And I am really interested in complex decision-making.

Host: Our patient interview will be facilitated by Daniel Wang.

Daniel: My name is Daniel Wang. I am a first year medical student at the Yale School of Medicine.

Host: Our faculty interview will be facilitated by Dr. Margaret Xu.

Margaret: My name is Margaret Xu. I am a third year resident in the primary care program at Yale.

Host: Dr. Xu was a resident at the time of the recording but is now a board-certified Geriatrician.

My name is Helen Cai. I’m a fourth year medical school student at Yale School of Medicine and I’ll be your host for this series on geriatric medicine.

Over the course of this episode, we'll be following the trajectory of a diagnosis of dementia: its onset, diagnostic workup, delivering a diagnosis, and how to continue support for a patient and their caregivers over the course of their illness, which can often be a long and emotionally arduous journey. 

Before we get started, please know that this content is made to be for learning and entertainment purposes only, and should not be used to serve as medical advice. If you, or a loved one is suffering from anything discussed in today's episode, please be sure to discuss it with a medical expert. Now onto the show.

Chapter 1: An Unexpected Diagnosis

Host: Let's start at the beginning. 

MaryLee: The one thing that I would like you to understand is that I truly feel a sense of accomplishment. Despite everything that I've gone through. I attended Albertus Magnus College. I also went, I received a Fulbright Scholarship from the University of Perugia, a master's degree from Middlebury College. 

I was an educator and I am still in contact with former students. I really enjoy talking to them. I've had students we've had students come to our home

Host: The onset of dementia can be insidious, but not unnoticed. Sometimes there are distinct but subtle changes that patients and their family can identify, especially in retrospect.

Gennaro: The year that my wife retired from teaching, I noticed that she was repeating herself quite often.

MaryLee: You know when you are at a point where you're trying to find words to explain things when you've been one who's basically been a linguist, and those were not difficulties for you in the past, you definitely find it right in front of you that something is not going on that should be going on, that I was used to having happen.

Gennaro: When we noticed that her memory be basically of the problem we end up going to the Adler Center and Dr. Ouellet, Jennifer Ouellet put in a request for a spinal tap.

And that's where the diagnosis came out.

Host: The diagnosis of dementia carries a large weight behind it. We hear the word used colloquially in a lot of different contexts. Let's hear about the clinical definition of the diagnosis from the Drs. Ouellet.

Ouellets: it's important to think about the definition of dementia as a clinical syndrome that encompasses cognitive impairment out of proportion to what might be expected based on someone's age and comorbidities, plus functional impairment, meaning that a person has difficulty doing their instrumental activities of daily living or basic activities of daily living as a result of the cognitive impairment.

The main things to think about with what's normal is, things like some delayed processing speed or delayed recall of either names or information, but usually able to get the information if given a few minutes to really think about something. But usually should not affect, for instance, your ability to maintain your independence, right? So those functional things are really important. 

So I think that sort of underscores two points, is that when diagnosing dementia, it's really helpful to have really good functional information. And so one of the things that often really helps with that is having good collateral information, so from either family members or somebody who lives with the patient who can really give you an idea of what particular challenges the person might be having. And then the second thing I think that underscores is that the value of doing formal cognitive testing. Because, certainly there are things that we can gather just by talking to somebody, but it's also really helpful to have somewhat of a validated score that we can use to compare, over time in particular, within the same patient.

Host: Okay, so there are two big categories of impairment to evaluate for when diagnosing a patient with dementia: cognitive impairment and functional impairment. Let's focus first on how to gather information to evaluate for functional impairment, which might come in the form of asking families about a patient's independence in performing iADLs and ADLs--that is, the instrumental activities of daily living, and the activities of daily living. 

Greg Ouellet: There are a lot of times that I think family members attribute some pretty significant cognitive complaints to normal aging cuz they're not really aware that there's a differentiation. And if you don't have dementia or mild cognitive impairment, one shouldn't be significantly repetitive and shouldn't be unable to manage their medications or things like that. Those are not parts of normal aging.

In a particular visit, if a person comes with a loved one, if that loved one starts doing much of the speaking for the patient, doesn't necessarily mean that the person is cognitively impaired. They may be somewhat more passive, the patient and defer to a loved one, but if that wasn't always the case, it makes you wonder why this person who is normally pretty proactive and involved in their care is taking more of a backseat. That makes me more concerned that they have cognitive impairment that hasn't been recognized.

Host:  Okay, so one thing we can pay attention to is the dynamic between a patient and their loved one during the office visit.  But, what are some specific symptoms that we might explicitly ask about during that visit?

Jen Ouellet: Change in mood or personality. Many times families will be worried about a patient developing a depression which could be the first manifestation of a dementia, or things like change in appearance and hygiene.

A person missing refills or calling in more frequently for refills, I think is one that could indicate a memory problem. Or a person requesting more frequent visits for subtle medical complaints, things like that. 

In a partnership where one partner has always done the finances or has always managed the medications, it may be a challenge to know if a person has an impact on their day-to-day. 

Host: These are some great examples of clues that we can start to pick out when assessing for dementia. For context, when we say ADLs we are usually referring to activities such as bathing, dressing, and eating - these are basic activities of living that typically rely on mobility and coordination. iADLs, on the other hand, typically refer to more cognitively complex activities such as managing finances, shopping, or using the telephone - activities that require a bit more organization.  

Let's move on to that other form of impairment to assess for: cognitive impairment. The cornerstone of assessing this will be formal testing.

Greg Ouellet: Cognitive testing can fall into a few different categories. So there's some brief screening-type exam. So the most common one that you'll encounter is called the mini-cog. So that has the three item recall and a clock drawing task. And what that's really used for are settings where we don't have a lot of time and we're looking for: is there a signal that this person may have dementia? So really good as a screening test, but really not terribly specific for dementia. But very quick. So can be done on a hospitalized patient where you think that there could be some cognitive concerns. 

Then there's what I would call like the most common type, which are multi-domain cognitive assessments.

So that would include things like the mini mental state exam, the SLUMS, which is the St. Louis University mental status exam, and the Montreal cognitive testing the, or the MOCA. And basically they're gonna look at several different domains of cognition. So things like, short-term memory or visual-spatial, language, et cetera. The main difference there is that, for instance, the MOCA and SLUMS slums have some executive function tasks, so ability to plan day-to-day, that really isn't included in the mini mental state exam. 

But all three of those exams are similar in that they test lots of different things and they, interestingly, are all out of 30, even though the MOCA is the hardest of the three. So the scores aren't exactly comparable across, across the three. 

And then on the most complete end, you have neuropsych testing. So neuropsych testing is multi-domain testing taken to the most extreme, where you're gonna test each domain of cognition in several different ways. So that's gonna be the most complete and most specific way that you're going to be able to say this is dementia versus some other cognitive syndrome; whether they have mild cognitive impairment. However, it's quite long, it's quite lengthy. Usually takes several hours to do and certainly if somebody has behavioral disturbance as a part of their syndrome, it can be really frustrating to do that.

So I would say that can be a part of the workup of dementia.

Most people, I would say, tend to use the MOCA now, but I would say that using the MOCA, the SLUMS or the MMSE tends to be what most people are doing in a routine clinical visit.

Host: Let's summarize what we've just learned about performing assessment for cognitive impairment. There are a range of assessments that can be performed, which tend to vary in specificity and the amount of time it takes to administer the test. One of the quickest, but least specific tests, is the mini-cog. It takes just a few minutes. 

The longest, but most specific test, will be a battery of neuropsych testing--which can take several hours to days. 

Right in the middle is where you will see most of our in-office, primary care testing performed: this includes the mini-mental state exam, the SLUMs, and the MOCA. The scores from these tests will usually let you know if a patient has normal cognition, mild cognitive dysfunction, or severe cognitive dysfunction, the latter of which - if associated with functional impairment like we talked about previously - can be diagnostic for Dementia. But, keep in mind that some of these scores need to be interpreted based on level of education, such as if an individual has graduated from high school or not. 

 So, we've spoken a lot about how to determine if cognitive or functional impairment is present. But when is it appropriate to start conducting these assessments? Should it be done all in one visit or over many visits? And what else should we keep on our differential besides dementia? 

Margaret: Do you feel like you have to rule out reversible causes first before deciding if any cognitive testing you do would even be accurate? Or can they be done spontaneously?

Ouellets: For me, I think practically speaking. Just because it can often be hard to get somebody back to clinic, I'll often do the cognitive testing, but also be simultaneously thinking about are there other things that are going on that may make my cognitive testing not the most helpful? So for instance, like in the visit itself, I'll be thinking about, okay, does this person seem to have depression? So I may do like a two question screener, like a PHQ-2 or if I have more concern that they have depressive symptoms, do something like the geriatric depression scale. We're asking family also about significant depressive symptoms.

So that's one that I'm gonna get a sense of right in the visit. But I'm also gonna be thinking about things like, for instance hypothyroidism, vitamin B12 deficiency, obstructive sleep apnea, right? So are those things that we're going to need to do additional testing on? I would say for the first two, probably thyroid and B12, I'm probably inclined to test most people at an initial visit, if it hasn't been tested in the last year.

I wouldn't necessarily chase obstructive sleep apnea unless there's reported symptoms. So either there's somebody who lives in the house that's reporting that they have daytime sleepiness and snoring or somebody who, for instance, lives alone doing something like a screening for daytime somnolence that might make you wanna refer to sleep medicine.

But I think it is definitely important to be thinking about those from the get-go. And ruling that out before giving necessarily the diagnosis of dementia. I don't know that it necessarily means you should hold off on cognitive testing, but I think before giving somebody potentially a life-altering diagnosis, that it's helpful to rule out the things that we can do something about. 

My one caveat to that is, is that sometimes , a patient is referred to us fairly late in the course of their functional and cognitive trajectory and such that they may have moderate to severe dementia when we're seeing them for the first time.

And in those situations I would say, I think it's still worth thinking about reversible causes, but I think we should think about them, not so much as that they're reversible causes of the dementia, but that they're potentially exacerbating factors.

And so the differentiation there being that I don't expect somebody who has low B12, for instance, to have an eight out of 30 on their MOCA. Do I think that their low B12 is potentially not helping the situation and maybe making it worse than it otherwise would be? Probably true. But I would say that in those sorts of situations, I think sometimes we could be a little bit too cautious with saying, I think that this person does have dementia, and that we should bring more services to bear.

Margaret: Anything else that we should think about in terms of can't miss diagnoses or anything else on the differential we should think about?

Ouellets: I think part of our sort of initial assessment is to guide whether we think someone has dementia, if there's a particular subtype that their symptoms and trajectory fit with, but also if there are sides that might indicate an alternate diagnosis that sometimes dementia can accompany. 

So these are things like Parkinson's disease or other neurologic syndromes that can sometimes have cognitive impairment associated with them. So you'll wanna do a really good neurologic assessment of your patient as well. I think you'll wanna screen for things like nutritional deficiencies. As Greg was mentioning, depression or sleep apnea. 

I'll mention for those of you who practice in the inpatient setting, sometimes we're called as geriatricians to distinguish between delirium, and dementia. And so in particular, if you're seeing someone in the inpatient setting with cognitive impairment, you'll wanna make sure that you're not looking at a patient with delirium. Because preexisting cognitive impairment can predispose to delirium, but not everyone who gets delirious has preexisting cognitive impairment. So important to distinguish between the two in, in thinking about the workup and guiding expectations as well.

Host: These are some really great diagnostic pearls. First, we should think about reversible causes that can masquerade as dementia or compound it. Some of these might include B12 deficiency, depression, sleep apnea, hypothyroidism, and polypharmacy. A good neurological exam can also be very helpful in determining if a neurologic syndrome such as Parkinson's disease is present. Secondly, diagnosing dementia in the inpatient setting is very tricky, as it might be confounded with acute delirium, which is a different entity.

It's possible that working up a case of dementia will happen over multiple visits, and possibly involve a referral or two. You might recall that Mary Lee was referred to two separate specialty clinics: the Adler Center, which is a geriatric clinic associated with Yale School of Medicine, and a neurologist’s office where she received a lumbar puncture. 

Let's move on to what happens towards the end of this diagnostic process: delivering the news.

Chapter 2: Diagnosing Dementia

Margaret: How do you approach that initial conversation? When giving somebody a new diagnosis of dementia

Ouellets: I'll start out most of my conversations with patients by asking what a good day looks like for them and what they most enjoy doing to get a sense of the sort of values and activities that reflect those values that they enjoy. 

Approaching the initial diagnosis of dementia can be a really challenging conversation. Some people may come to a visit suspecting or worrying about a diagnosis of dementia, while others as you heard from our patient may not necessarily be concerned about that diagnosis being the reason that they're having the symptoms they're having. So being able, I think to feel the room out a little bit in terms of what your patient and their caregiver need.

 I think it's important to use the word dementia because I think sometimes we skirt around it as health professionals and I think that it is important to use the words and talk about what a diagnosis of dementia means and how we can help enhance their quality of life and the things that we can do for them with that diagnosis. 

I think a lot of times people worry partly because we don't have a lot of medications specifically at this point that can treat dementia. Hopefully that will change in the future. There's lots of great clinical trials going on, but I think it's really important to be there for people in that vulnerable place and provide them with the support that they need to help assure them that we're a team here and we're gonna help get you the resources that you need to be able to optimize your quality of life.

Host: One thing to note here is that as the result of a clinical trial published in 2023, a drug called lecanemab is now FDA-approved for MCI and mild dementia due to Alzheimer's Disease. This is a drug that targets a biomarker of Alzheimer’s disease, called beta-amyloid. Trials with lecanemab showed fairly modest cognitive and functional benefits when administered early in the disease course, but do have significant adverse effects including edema and bleeding in the brain.

However, this class of anti-amyloid biological drugs is still in its infancy, and on the whole  the options available for treating dementia remain very narrow.

Daniel: Mary Lee, what is day to day life like for you right now?

MaryLee: As I mentioned, I do have quite a few friends and we do get together. So that particular type of relationship for me is still present. I don't find if I'm trying to get in contact with someone, that person is not there for me. There are people who are aware of the fact that I'm not the wo, the person that they remember from in me of when we first, started being together.

My friends from college or wherever. 

When I first became aware that I was, I had Alzheimer's and then I, not knowing what that was gonna lead me to, that definitely was like a kind of put me in, stop me in my tracks, but in my mind I still think, I could still figure out, still go on that road and be surrounded by the people that I care for, who care for me. 

Yeah. That's the attitude that I would like to retain.

Gennaro: I try not to, make it a heavy weight on me or on her. Trying to stay positive. We are active. We go around, we getting together with friends. Socialize basically, and trying to keep life the way it was. 

Knowing the fact that there is no cure for the disease Alzheimer’s, the only thing that now is alleviating my mind a little bit is those new researchers, those new medications but still not fully approved to slow down the progression of the disease.

But to me was just thinking about an oil lantern, a light that slowly is going to turn off. 

MaryLee: I know that I have dementia. I'm very much aware of that. But I, and I also know that it's related to Alzheimer's disease

It was a shock, being the person that I was, the teacher that I was, and I still had the contact with the students, but there was definitely a difference in who I was. And there was something that was difficult for me to really be able to accept.

Gennaro: Obviously in the back of my mind there is that thought about the candle or the light going off a little bit at a time. The only change is making sure that all the medications for her are given at the right time. Keep the schedule the way they're supposed to be and just hope.

Hope is the last to die. That's all. 

Ouellets: Everybody's a little bit different in terms of their trajectory. And so we're not great at our prognostication for how things will go, but a wise doctor that I worked with a few years back had once said, and I think that this is quite true, is that the next six months is likely to look like the last six months in terms of progression.

And so, if things have looked relatively stable over the last six months, that prognosticates pretty well for what the tempo of progression will look like. And I think that although, like I said, everybody's a little bit different, there are some general trends that we can expect over time.

And so if we're seeing somebody in early stages, we can expect that the things that they're gonna have trouble with in the not so distant future are more of the instrumental activities of daily living. So maybe need a little bit more help managing their medications, have somebody help manage their finances, potentially have some trouble with driving their car. 

Those are the things that are gonna happen fairly early on, followed by more challenges with things that are more day-to-day. Like for instance: taking a bath, getting dressed, and really the things that we expect very far down the line when someone has a lot of impairment and severe form of the disease to have trouble with feeding themselves.

So that would be late stage in the game. So usually, when I'm talking to somebody with a new diagnosis, I don't usually lay all of the full natural history in front of them, just because it's a lot to take in all at once. Certainly if somebody's being referred to us and they're already in the most severe stages, then that's a different story.

But if somebody has mild dementia I think the anticipatory guidance that I'm giving them and their loved one is going to be related to challenges with finances and driving and medications and gearing my counseling towards: we don't know when these are gonna be problems and we don't want these problems to ever get you into trouble. Where they're gonna make you end up in the hospital or have a car accident.

So let's put in place a way of monitoring these things ahead of time so that if they do become a problem, we keep you safe. And I can't say that always goes over particularly well, particularly if people perceive a challenge to their independence. Although I will say that anticipating that this could be a problem and that we're trying to keep someone safe, instead of assuming that someone can't do it, tends to go over a little bit better. 

We might not be able to extend life. We may not be able to keep their memory of everything, but there's definitely things that we can do that are going to respect that person's values.

Host: The diagnosis of dementia holds a note of finality in it. It's a terminal diagnosis. Some patients and their caregivers may be ready to hear about the natural course, but others might not be. 

I think Dr. Ouellet does a great job of setting up the diagnosis as the beginning of another conversation, or the beginning of another journey. If you listened to our previous episode on ACP, you might be familiar with that idea of a dynamic and adapting treatment plan. It’s a conversation and a journey in which we really strive to listen to a patient's values and ask ourselves as physicians what we can do to best align ourselves with those values--not only now, but as the values may change over time.

 Let's think for a moment about how we can apply those concepts from the ACP episode to caring for a patient with dementia. 

Jen Ouellet: I think in particular in the context of dementia, the advanced care planning conversation goes back to the people in their life that are important that can help make decisions as things progress. So having a good understanding of who is in their life, who their major support system is, who they most trust to help make decisions for them if need be, is really important.

As we started to talk about getting back to the values and things that are important for the patient: in particular when thinking about things like as dementia progresses, will the patient need to transition to a different living environment? What does the future bring with regards to that? Or with regards to nutrition? What are the patient's values and preferences around those things? 

Other safety topics that come up include things like cooking, the ability to cook safely. There are maybe issues with instrumental activities of living, like medication management for example. I know if a patient has something like diabetes and can't manage their insulin, for example, that can become a safety issue. Driving safety is something that we talk about. You can also think about discussing firearms in the home and safety around firearm storage is an important topic. 

The conversation, I think is a journey it doesn't often happen in a one-time sitting. And we acknowledge that the reality is that things can change over time.

Host: Something else we talked about with that dynamic and changing plan was the power of building a team with different members on it. Let's ask Mary Lee and Gennaro who some of the members of their team are.

Chapter 3: Dementia Treatment and Specialist Care

Daniel: Could I ask in terms of just general primary care who helps manage your dementia Alzheimer's diagnosis?

Gennaro: There are a series of neurologists, different people. As I mentioned, Dr. Ouellet from the Adler Center.

Evaluations happen every six months or every four months, depending on the doctor because there is the various aspects. The memory as I mentioned, the Alzheimer's with Dr. Ouellet.

It is an ongoing thing with doctors. Last year we took a little bit of time off. We went to see our daughter and grandkids in California. We have a, another son here nearby but we also had a wedding to go to in Italy. And we took a little period of time off.

Margaret: When should a primary care provider get either a geriatrician involved or neurologist?

Ouellets: So I think that there are often a lot of things that can be done in primary care. I think a biggest barrier to caring for folks with dementia and in primary care is a time barrier. Because I think a lot of the things that. Really have a lot of value added for caregivers and for folks with dementia are not super pharmacologic. They are often lots of counseling. And so having the time to be able to do that is, I think, often really helpful. 

In my mind when folks are starting to have different functional struggles, I think that it's often a really good time, fairly early on as soon as you recognize it, to, to refer. Particularly because we can start thinking about what are the social and behavioral interventions that we can put into place that can really help impact somebody's quality of life. So earlier, earlier referral is better in that regard that we can get some good, helpful services for a patient and for a caregiver.

Yeah. I agree completely, Greg. I'll also say I think that sometimes specialists may be more knowledgeable about the resources that are available just because we do this a lot. And so I think that can be really helpful too, to connect people to the important community resources that can be really so critical in enhancing quality of life. And I think as you heard from our amazing patient and caregiver interaction, that quality of life is so important and maintaining that quality of life and being able to enhance a person's values is so important when you're dealing with a diagnosis of dementia.

Host: This is something I'll continue to think about when I think about referrals. When we think about referring patients to a geriatrician, the most valuable resource we are asking of them is their time. It might not be a specific medication or intervention--but, as our experts pointed out, there might be a social support resource or network that they can help our patients tap into that will greatly enhance their quality of life.

Let's pivot though, to think more about what medications or interventions we can offer our patients.

Margaret: We don't have great treatments to necessarily reverse or cure dementia, but are there any strategies or medications at least for managing the symptoms, the behavioral and sleep disturbances that one might see?

Ouellets: Behavioral disturbances and sleep disturbances are as, you've mentioned, exceedingly common in dementia. In fact, there can be very subtle behavioral changes, things like apathy or mild mood lability.

It's very common that persons with dementia have behavioral or psychological symptoms, or that they have sleep disturbances as well. And so I think we could talk, we could probably devote an entire podcast to the sort of management of those symptoms. But I think an important tip could be to screen for behaviors associated with a dementia.

And really to do a good job of describing exactly what the symptom or problematic behavior is. There's something called the DICE model where you describe a problem or behavior and then you investigate for different potential precipitating causes or triggers for the behavior. And then you create a care plan around reducing that trigger potentially, and then evaluate the plan over time for success. So I think, important to think about really describing the behavior, which can be helpful when you think about whether or not a medication could be indicated.

I'll just say though that studies have shown that non-pharmacologic interventions, like developing a non-medication care plan around the symptoms has actually been shown to be more effective than many of the medications that we prescribe, not that we don't prescribe medications for symptoms, because we certainly do. But crafting a non-medication care plan is really the first step.

We can give like a concrete example. So you may have a patient where the family member says, they're very agitated every afternoon and then that could encompass a whole range of different things. 

And so when you find out more details about it, you find out that every afternoon is when a particular caregiver comes and tries to give the patient a shower. And then you can get more detail and you find out that the patient a shower says, okay, we have 15 minutes. You need to get in the shower right now because you smell and you're dirty.

And then the person's behavior is that they resist. So that they resist. They don't want to get up out of the chair and they swat at the caregiver who's trying to put them in the shower. And so with all that detail we think about, okay, some of it may be that there's particular difficulty with wanting to take to bathe, right? But it also could be some of the approach of the person who wants them to bathe. It also could be that the afternoon is a particularly challenging time. It may be that the person sundowns. 

So, with that, with all that detail, you have at least four or five different variables that you could change in your approach to doing this that may not end up requiring something like, for instance, a trazodone or something like that to calm the patient down.

So it may be okay, we're gonna try giving the person a shower in the morning, right? When they tend to be more lucid.

Host: Hearing all of this was really helpful. As doctors who practice medicine, we often tend to reach for medicines when treating patients. It's the way that we're trained - I mean.. it's the name of our discipline and of our specialty. But in providing interventions for dysregulated behaviors, it's important to step back for a moment and appreciate the root cause of the behavior, rather than trying to use a medication to suppress any acting out.

We heard some of those considerations: maybe the behavior is tied to a certain time of day, and the patient is susceptible to sundowning. Maybe it has to do with the tone and attitude of a caregiver, who might be using derogatory language. Maybe there are other basic needs that need to be met first, such as pain, hunger, thirst, or the need to void or eliminate. 

As dementia progresses, more and more of these factors may come into play in a patient's behavior and daily living. All of that adds up, and it can weigh on caregivers in particular.  Gennaro had a little bit to say about what it has been like caring for Mary Lee.

Chapter 4: Supporting Caregivers

Gennaro: Challenges, they are every day. As a caregiver I have to sometimes watch what I'm saying, how I'm saying it. And be mindful all the time. My English is also not one of the greatest, so I have to think in Italian first and then translate everything in English and express myself.

And sometimes they don't quite match. It could be taken in the wrong context and I have to be more more careful in what I say, what I do not say.

If you stay positive, it is a better way to look at the future. If you get demoralized, your patient gets demoralized too.

You really have to pay attention, have to be on the tip of your toes 24/7, but, with love, and good attitude, you can surmount. Yep, that's it. any obstacle.

Host: Love, and a good attitude. I wish there were more of that to go around. 

Let's hear from our faculty experts on what resources they recommend.

Margaret: What kind of resources are available to support their families and their caregivers?

Ouellets: Support for caregivers and for patients varies quite a bit from place to place. Many of the resources that are out there are fairly local and specific to the state and even municipalities that you practice in.

One thing that's really quite helpful is to think about: okay, were will I turn to for this information no matter where I'm practicing? And so I think, a few places. So Area Agency on Aging, that's the name of the nonprofit here in Connecticut locally, that administers lots of the services.

Although the term Agency on Aging is a fairly generic term that is used across the country for local agencies that administer lots of support services, whether that be Meals on Wheels, respite services, in-home caretaker, a variety of different things. So oftentimes knowing, okay, what is that local organization that is an area Agency on Aging where you practice is really helpful. 

In particular, also for thinking about caring for older adults with dementia, the Alzheimer's Association is a great resource nationally. And so oftentimes in various places they'll have things like adult day services, and also have a variety of support groups for caregivers that are affiliated with the Alzheimer's Association. 

And then I say this as someone who works at the VA, the VA has a whole different array of support services for caregivers and caregiver support groups. So that's something to keep in mind if you're not working in a VA, but for instance, the patient you're taking care of is a veteran.

And I think the last sort of big picture thing that I think is helpful to think about is that, much of geriatrics and in particular, dementia care is really, it's really a team sport caring for these patients.

And so this is a particular area where it's really helpful to get to know your social worker super well, because they're gonna be your best friend in terms of helping figure out how to connect folks with these services. It's helpful for us to know the basic lay of the land, but really collaborating with social workers and case managers in the community is really quite helpful.

Margaret: How do you assess for caregiver burnout?

Ouellets: Caregiver burnout is really important to screen for. And I'll say it manifests differently for every caregiver. So I think there are situations where people have become very sad or very angry, and so the emotions that are manifested in how it impacts them, I think is different. 

So it's important for us to maintain an index of suspicion for caregiver burnout, even if it doesn't seem like it's there. We've seen patients whose loved ones lose weight because they are not tending to their own needs. And we know that there are studies that show that caregivers of people with chronic illnesses, including dementia, have worse health outcomes themselves. So I think it's really important for us to ask questions in a non-stigmatizing, normalizing way, to help provide caregivers a space where they may feel more comfortable opening up about the impact that the caregiving has had on them. 

So what I will often say is, sometimes when caring for a loved one with dementia, people can find that it's really hard. Is that something that you've experienced? And if they say yes, then that gives the opportunity to say: okay, so what things do you find to be most of a challenge on a daily basis so that they can give you a little bit more detail about that.

One of the biggest challenges that I often find is that: our whole healthcare system, but in particular in this case, is not well set up to meet the needs of particularly not the most low income, but fairly low income individuals. And so this is a situation where the individuals that have the lowest income in some states, like in Connecticut, will be able to access a fair amount of services.

And certainly folks that have a lot of their own resources might be built to private pay. But the sort of in between fairly low income people but above, say, Medicaid eligibility can have a really hard time securing enough services to, to meet their needs. So I think that continues to be an ongoing challenge that somewhat requires us as providers and working with case managers and social workers to think creatively with family about how do we creatively try to piece together a care plan that's gonna meet this person's needs, knowing that the financial restrictions, the way that, that this has been set up. Which unfortunately we don't have control over.

Speaking to the resources that are available, you can think about tailoring those resources to what a caregiver's needs might be, because everyone will have different needs, and the way that it impacts them. And varying willingness to accept help and resources, as well.

Host: There's that team sport analogy coming up, again. I wonder who else is on Mary Lee and Gennaro's team? 

Daniel: Are there people that you rely on to help you care for Mary Lee or just to care for yourself, as well?

Gennaro: Oh, uh, her daughter's. Yeah. Son. Members of the family. Yeah. Friends. Yeah. Yep. They're all, all there.

MaryLee: They're there. They come here, or they'll call, how are you doing? What's going on? Things like that. So they're, yeah, they're definitely there. Not necessarily because we call them to say we need you. Alessia, she's in California, but we hear from her every day.

She works all, you know, regularly, but on the days in particular that she's not working we'll hear from her. Or she'll call us when she's on her way to work. So they're in our lives, so that's for sure.

It's an Italian family.

 Wrap-up

Host: Mary Lee and Gennaro certainly have a lot of love to share between the both of them--and their Italian family, near and far. I really hope they enjoyed their time together on their vacations to Italy and to California.

When I listened to their story, I was so moved by the sheer amount of love and good attitude that Gennaro had; he's such a champion for Mary Lee. And even though Mary Lee has this diagnosis that she will carry with her and will progress, I have a feeling that the light in the oil lantern will keep on burning as strongly and as brightly as it can. 

Here are some notes I took away from the episode, and I hope you did too. 

1. Dementia is a diagnosis that is characterized by both functional and cognitive impairment. There are certain reversible causes that can masquerade as or compound these symptoms, but it's not strictly necessary to rule all of these out before proceeding with assessment for dementia.

2. Once a diagnosis of dementia has been made, there are certain components of long-term care to be addressed. Consider referring to a geriatrician early on, who can provide domain knowledge and connect patients with resources. In your role as a primary care provider, you can provide anticipatory guidance about safety, especially as iADLs and ADLs may be lost. And consider starting the conversation about advance care planning early on, with the understanding that a patient's values and goals will change over time.

3. While there aren't medications to stop or reverse dementia, there are both pharmacologic and non-pharmacologic interventions to help address symptoms that can affect quality of life, and behavioral issues. It's important to gather and understand as much detail as possible about these situations, so we can best brainstorm those non-pharmacologic interventions.

4. Don't forget that caregivers need support too. Maintain a high index of suspicion for caregiver burnout, and try to determine what resources a caregiver needs and/or if they are willing to accept help.

And that concludes our episode for today and for our Geriatrics series. Special thanks to Mary Lee and Gennaro, our patient interviewees. Daniel Wang and Dr. Margaret Xu served as our patient and faculty interviewers, respectively. And of course our fabulous Drs. Jen and Greg Ouellet, who served as our faculty experts and provided peer review for the project. 

This episode was produced by Daniel Wang and myself and was edited and produced by Dr. Josh Onyango. Follow us at PC pearls on Instagram or at PCare pearls on X or Twitter to get details on show release times. Throw us a five-star review to help others find our channel. And please share the episode with friends who would find today's topic. Interesting. 

This is Helen Cai with Primary Care Pearls. Thanks for joining us. We'll catch you in the next one.