Allan: Tens of millions of families with Alzheimer's disease and dementia all over the world, including our family. We are Alz In The Fam. I'm Allan Fair.
Poli: And I'm Poli Fair Noyes. We're siblings, we’re parents, but we're also caregivers.
Allan: This is our podcast. This is our support group. Welcome to our family. Alzheimer's sucks, but this family lives, laughs and learns as we fight for a cure. Welcome. Hey, Poli.
Poli: Hey, Allan.
Allan: So, these next two episodes of Alz In The Fam are really exciting because in these episodes you, me and our sisters Boni and Trissi chat with our first ever guest.
Poli: Yeah, so excited. So, in this episode, we welcome Brigid Reynolds from the Memory Disorders Program at Georgetown University. She's a research investigator conducting clinical trials for new treatments for Alzheimer's disease. And with almost 20 years at Georgetown, Brigid is incredibly experienced and specializes in evaluating and treating patients with memory problems like our mom. In this episode, she tells us how she evaluates patients with memory issues, including the types of tests she administers and the importance of a family member’s description of symptoms. She breaks down the subtle differences between Alzheimer's dementia, vascular dementia and other dementias. Brigid shares her knowledge about tools currently being researched for diagnosing dementia and the importance of getting evaluated early.
Allan: Yeah, it was a really great conversation. So, here’s part one of our conversation with Brigid right now.
Poli: Hey, Brigid. Welcome to the Alz In The Fam podcast. We’re so happy to have you. Today, for everyone out there, we've got Brigid Reynolds who is our mom’s neurology provider at Georgetown Memory Disorders Program. And she's very kindly agreed to have a conversation with us about our mom. So, I think we first met you around October of 2014. And, I had tried to get in to see a neurology provider and had a lot of trouble finding. I know you guys are really in high demand. We're really lucky to get in to see you. And we loved you the first minute we met you. But tell us about, if you remember when you first met our mom, was she kind of the average sort of level of dementia that you first encounter patients?
Brigid: Alright, so yeah. So, it was September 26, 2014. And thanks for the electronic medical record, I can look back and tell you. And I would say fairly typical when you came in and I think Poli were the only one that came with your mom in that initial visit.
Poli: I don't know. Boni, did you come? I don't know.
Boni: I think I was there, but I'm not positive. I was there certainly, at one of the first ones, if not the very first.
Brigid: You may have been there. I usually put in my notes who was there, but any rate, you had said that your mom had had symptoms for about 2 years before you came in. And I’d say now overtime, we’re seeing people earlier over time than in 2014. But many people come in after they’ve been experiencing symptoms for a number of years. And sometimes, too, when they've been evaluated by multiple providers before then.
Poli: Okay. Yeah, I think we actually, looking back, we realize a lot of things that happened four years before that were actually probably dementia related. So, what, I know that there's sort of a standard exam, I think the Mini Mental State exam. Is that what it's called? And there's levels associated with that. So, what was my mom's level, and what would that be considered in the scale?
Brigid: Okay, so when she came in her initial evaluation, it was 22. That would be considered mild dementia. However, as you know, that's not the only way that we make a diagnosis. We use the Mini Mental State exam score as a rough guide, and what's typically more important is what the family and the patient tell us about what's been happening with them. But it's a score from 0 to 30 so zero would be no points at all. And the more points you get, the better. 30 would be the highest point. Once you get an on average, a score from about 20 to 26, would be consistent with mild Alzheimer's disease, 26 to 28 - mild cognitive impairment and then 28 to 30 - normal. Okay, and then she scored actually higher when she came in for the screening visit for the study, which was in 2015. Her score was 25 out of 30. So…
Poli: I wonder how much of that might have been due to, I believe you and her primary care provider had put her on like B12 and I don't know if Aricept started, but it started with you as well, right?
Brigid: So, the Aricept started with us, but she had had started the B12 before. Because she had, she already had some of the work up done by the primary care provider. She had had her MRI and there were blood tests that we do to test for certain things that are what we call reversible causes of dementia. So, we don't want to miss something that's treatable. And your mom had a low B12 which is something that needed to be treated and can contribute to memory loss. But I don't think we really thought that that would have fully explained her memory loss. And the other thing you have to have is evidence of functional decline. So, in order to differentiate between mild cognitive impairment and mild Alzheimer's disease, there has to be something that the person is not able to do that they were once able to do, and they're not able to do it because of memory or thinking changes. And that with your mom was, she was living alone, she was managing almost independently, but the one thing that had changed was that one of you was assisting her with management of her finances. So, she was making mistakes and that was the first evidence of functional decline that that we talked about.
Boni: Yeah, you know, and I have a question there because, and it kind of goes into where I see the most questions coming to me. And that is, is that where you usually see the first issue? Because when I talk to people, I always, that's one of the things I bring up is there's these multi-step tasks become so difficult. And, you know, someone said to me exactly that, that their loved one needed to go to the dentist. And I said, “You don't understand the number of steps it takes to go to the dentist. You have to remember that you need to go. You have to call the dentist. You have to set up an appointment, explain your diagnosis. You have to remember on the day you're supposed to go. You have to drive yourself. You know, you have to have your insurance, you have to do this and that”. And that's such a multi-step task that it's very difficult, so. And same thing with finances. So, I'm curious if you think that that's one of the first things that you normally see and then therefore, that's a place where someone whose concerns should get involved right away and one of the places where caregivers should or family members should try and get involved right away.
Brigid: Yeah, I would say so, I usually sort of have a… when I'm trying to tease out evidence of functional decline and part of the problem with this is, as you can tell, that's highly subjective. So that's, I mean, we’re really working on a big part of the research is better biomarkers. Early, earlier ways of detection. But I would say finances is one of them. Driving is another one of them. Cooking is another one of them that you can use. Organizing male and papers is another one. So, you know, if people have any kind of an office at home, just even the process of sorting through mail, knowing what stack you keep, what stack is junk, what goes in recycling. And so, organization in general, at home. I usually use the finances; the cooking and organization are three key ones to ask people about.
Boni: Someone's going to put me away right now if they looked in my home office.
Trissi: I was thinking the same thing Boni. That just means we're creative right now.
Poli: But I do think with Mom, what I noticed was she wasn't paying her bills. So, I would go in her house and see on her kitchen table a bunch of bills. And that was never a thing for her. So, the way you diagnosed my mom with the tests and the blood work, that's sort of a standard work up for Alzheimer's or someone who comes to you with the memory issue?
Brigid: Right. Those are two big pieces of it, but the biggest piece of it is the history.
Brigid: I want to know how things presented and whether or not and how they have progressed. So, what was the first symptom that was noticed? Was it memory? Was it language? Was it orientation? And then, and how has it progressed? Or has it not progressed?
Brigid: That's probably the biggest piece. And then you want to look not just at, you know, memory and thinking. You first ask what the patient and or family has noticed, and then you also… So, it's memory or thinking then behavior and function. Kind of like the ABC's - A's activity, B is behavior and C is cognition. You want to look at all those things in a history.
Poli: I remember at one of the very first visits, I don’t know if it was the very first one. You did some tests I've seen done on my daughter when they suspected a concussion. Sort of follow my finger or, and I assume those are neurology tests. But would those, I mean, are those to rule out a different problem or what? What is the reason for that in your mind?
Brigid: Yeah, so, typically, that is it. So, you want to do a full neurological exam, typically with Alzheimer's. There aren't any, in early Alzheimer's, there's no physical findings on exam, but different dementias could have different physical findings. So, body dementia, for example, you could have Parkinsonism. So, you want a physical exam, is a big piece of it and you're primarily looking for - could have evidence of a stroke. You know, focal symptoms, or differences on one side of the other.
Poli: Yeah. Okay.
Brigid: The exam is also part of it. And right now, that's the piece of it that we can't do as well remotely, with the remote visits during this, but that’s… yeah.
Poli: So, my brother Allan has, he has a father in-law who is also struggling with dementia. But I think it's a different type of dementia, isn't it, Allan?
Allan: Yeah, it's I believe it's called vascular dementia and is the type that's commonly associated with Type 2 diabetes. And it's been interesting to listen to this conversation because some of my earliest memories of him, as his memory started to deteriorate, had to do with him making a lot of financial mistakes that were really alarming to us. He gave a donation to his church that he flat out could not afford, you know, thousands of dollars that didn't actually exist and were in the account on a credit card. He loaned people money that he didn't, there wasn't any money to be loaned. So, while the type of dementia might be different, a lot of the patterns seemed to be the same.
Poli: So what I was wondering, Brigid, is - how would you, what would make you decide is someone had most likely Alzheimer's dementia versus vascular dementia? Or are they the same thing?
Brigid: Well, they're not the same thing and Alzheimer's is the most common form of dementia, followed by vascular is the second most common. And then there's mixed dementia where people could have both a combination of vascular and Alzheimer's disease. But the two, there are both the physical exam and the brain and the MRI; the brain imaging, which is also done to, you can't detect Alzheimer's disease on an MRI. There are some changes that could be associated with Alzheimer's disease. But, typically in a vascular dementia, someone who's had a history of stroke, and then on a physical exam, you… so, there's actually the test that we use called the Hachinski scale, and that's, you know, used in all research studies. In a research study you want to have people with, you want to know the type of dementia that they have as best you can. And vascular dementia would be excluded from an Alzheimer's trial. But on that Hachinksi score, there's a variety of questions that you ask: Does the patient have a history of hypertension? Does the patient have a history of cardiovascular disease? Do they have changes on their physical exam, and one of the big ones, and I would be interested to know in your father in-law's case is also the pattern of decline is stepwise, as opposed to gradual with Alzheimer's disease. So, someone has a vascular hit, and then they take a cognitive decline, and then they stay at that level, and then they could have another vascular hit and then decline again. Thirdly, the medicines that we use for Alzheimer's disease aren't for symptomatic benefit, haven’t been really proven beneficial in vascular dementia. So that's, you know, a huge need to make more progress there. So, it was your father in-law's declines, stepwise? And it's never like crystal clear, you know, like, yes, it was right that day that, but…
Allan: It's hard to say. I only see him every, yeah, maybe once every month and 1/2. But I would say over the last three years, I witnessed him going from being able to drive to not being able to. I witnessed him going from being, I assume the opposite of incontinent is continent going, you know, being able to handle that all by himself, to seeing a few incidents where he's had some accidents related to that. I have noticed that more recently, he is clumsy now. His ability just with basic coordination, you know, just him going up a flight of stairs, just is kind of like, “I hope he gets up there okay”. And he's always struggled with weight, as is common with those with type two diabetes. And I would say he's as heavy as he's ever been over the last year as well.
Poli: I think Allan’s wife, Tina, mentioned to me that her dad was also having more MRI's as tools for diagnosis than my mom was. And I wonder if that's what, if they're seeing a lot of clues there that making his doctors think that it's vascular. Would that be normal Brigid?
Brigid: Yeah. You’d use the MRI. It would tell you a lot of about vascular and some about Alzheimer's disease, too.
Poli: Well, circling back to my mom because, you know, near to my heart, I remember we really struggled a few, three or four years into us being, bringing her to see you with whether or not to have my mom have cataract surgery. At the time we first talked to you about it, she had mild cataracts. She could still see; she could still read, but it's a little cloudy. And we knew that it was kind of a difficult process after you have cataract surgery. My mom was still mostly living alone, but we were visiting her constantly. But with cataracts surgery, you need drops four times a day. And I remember you gave us a really good advice about that. We were like, “Wow, do we spend the money, the time to move her in with us?”, and make sure she gets those drops four times a day afterwards. Do you remember what you tell people when they're considering whether or not to spend the time on cataract surgery and maybe hearing aids with their loved one who has dementia?
Brigid: I probably don't remember exactly, but I could guess. But you go ahead and tell me.
Poli: Well, I mean, I think you would probably give the same advice again. What would you tell someone who is considering cataract surgery for someone who has Alzheimer's?
Brigid: That as much of an advantage with their senses as they can in order to stay in the game. So, I would encourage them to get the surgery if it can improve their vision then that can improve their independence and so on. And that's what we're all about is keeping people as independent and as functional for a so long as possible.
Poli: So, with that advice that made so much sense to me, we did go ahead and have my mom have her cataract surgery. It took a couple attempts. She didn't, she wasn't able to sit still for the first attempt, so we had to do it under full anesthesia, which I again, we referred to you, were concerned about. Would going heavily under anesthesia affect her neurologically? And I'm, you know, I'm here to tell you for my mom, it was a phenomenal improvement for her to be able to see perfectly. And at this point, I would say even better because she would probably be losing glasses all the time and certainly couldn't handle contact. So, with the cataract surgery she didn’t need that anymore. But her sensory input is better. And I hadn't thought of it from that angle. I was worried about - can she handle the surgery? Can we handle doing drops all the time? So, just a plug. Thank you. Excellent advice for us.
Trissi: Yeah, is a rough month twice doing all the drops and what not, but the benefit far outweighed the risk.
Boni: And it was well worth the follow up. I mean, she stayed with me for most of the time in the follow up, and it was difficult when you have someone who doesn't remember why they have the patches on their eyes, and there was no makeup, and I caught her. I took all of her makeup away from her, and I caught her in my bathroom with a ballpoint pen, putting her eyebrows on. Like “NO! Don't touch your eyes with a ballpoint pen!”
Poli: Mom wants those eyebrows.
Boni: Yeah, she's got to have her makeup on.
Poli: So, that kind of leads me, Brigid to, I noticed, since I went to, I think I went to every single visit my mom ever had with you, that she kind of went up and down in her, not necessarily her score, but in her, I don't know, ability in her dementia. Sometimes she seemed really great and do the scores when you see over time, reflect that she was better sometimes than others?
Brigid: Yeah. I mean, especially that screening score when she screened for the study was, you know… But actually, though typically over time, you look at it - her rate of decline has been pretty standard.
Brigid: Back. You know, she came in with a
- She bumped up a little bit, but again, we don't rely on this. Anybody can score two-point difference on the MMSC on any given day. And then again, it's always just a rough guide. But then when I saw her the last time on 11-21-19, the last time I saw her in clinic, she was she was at an eight. After the study, when she came in April of 2017, she was a 17 or a 15. So, now I say 17 or 15 there is two ways to score that. And whether you asked the, I don't know if you remember, they have the sevens, the serial sevens or spelling them out backwards. And so, people will typically do better with the world than the sevens, subtracting sevens. But she scored a 15 with sevens in 2017 after the trial. So, figure a two-point decline if she came in 2014 with the 22, then in 2017 she was a 15. So, that's seven points, two points. You know, it's pretty average.
Poli: Yeah, okay good.
Boni: Yeah. And I think I had said one thing about that score, which I think you've kind of covered it. But I would say to Poli, you know, she answers the question, but the quality of her responses so much lower. You know, when her sentences wouldn't be as full or as rich, and her reactions wouldn't be there. And Brigid, this is a piece where you know, you knew my mom. You've known my mom over years now. And you know how she feels about certain subjects. You know, she doesn't like needles, she doesn't prefer to take medication, things like that. And you would be able to allow her to have those conversations with you when she couldn't fully make those connections and say the whole words out loud. So, while she's answering the question that you're giving, you can see that the fullness of her ability to communicate has dropped significantly.
Brigid: That's true. And without all of you by her side, I mean, I think you could probably imagine and for so many people, how much worse it is. So how long would she be now without having had the support from all of you over the years? I mean to me, there’s no doubt in my mind that what the families do ultimately is the most important; their support. You know, we don't have any disease modifying treatments for Alzheimer's disease. We have those symptomatic; the medicines that help with alleviate the symptoms. But the family support is what's it is. She wouldn’t, she couldn't have gotten through the trial. She wouldn't, not that the trial helped her, it helped everybody else and certainly advances science, but she wouldn't have gotten in for her appointments. She would have had behaviors that would have put her in, you know, very risky situations. So, and you all continuously, I mean, in the questions that you've asked, we’ve talked a lot about assessment of cognition. And maybe that's what this piece of the podcast is about, but it's the behavioral problems of dementia that are just… and in in your mom's case, too, they make the care very difficult.
Boni: Yeah and that was actually a question that I had about it. You know, our mother has still steadfastly denied having memory issues. She'll still say she lives alone. Do you find that to be the case? Because, you know, like in movies like Still Alice and things like that, you'll find the characters are aware and are involved in their own set of help and care. And we didn't, we, of course, don't have that. And I'm just curious whether my mother's situation, where she is unaware and in full denial of her condition, whether that's the case for most people or not.
Brigid: Yeah, it is far more common to not be aware, for the patient not to be aware of the problem, then for others around them to be much more aware. And it's, you know, some of it may be denial, but more that it's lack of insight, really. In many cases, and that lack of insight is actually part of the disease. So more common than not for the patients, for the individual with Alzheimer's disease not to be aware of their symptoms. And that can be a blessing in some cases as well, because people that are aware can be very worried about what's happening next. But on the flip side, it can make it really difficult. Obviously, when someone lacks insight into their illness, then they're going to be dependent, obviously.
Boni: You know, I just really want to pause there and think about that, because I know one of the most difficult things early disease for caregivers, family members, loved ones is the frustration that you have with your loved one about their ability to first provide the functions and then be willing to participate in their own care. So saying that that's part of the disease process and changing the language from being denial, to being unaware is such a critical piece in being able to help my loved one and lowering my own frustration level in the beginning. I tend not to be a very patient person, and this process has really helped me with that. But that kind of a mindset change early on that we can get out to people who might be in the early stages with their family, I just think is so critical.
Allan: I will add to that in my father-in law, Spiro, in the early days upon his diagnosis, when he still kind of had his marbles, so to speak, he would say, “You're going to see a big change in me. I'm going to change my diet. I'm going to change my lifestyle”. And then the very next morning, he had gone to McDonalds and brought back all this food for us, of which he could see there were empty wrappers and things that he was eating. And it's like “No, dude, you don't get it. Like don't bring that kind of food home”. You know, like there's fruits and vegetables here. We can make a smoothie in the morning, but he was already past the point or maybe even just didn't quite ultimately, at the end of the day have the interest in doing that. And so, to have this front row seat to his decline and see that he wasn't able to make that decision of, “Okay, I'm opening the fridge here and there is a piece of cake that I can eat or a piece of fruit or a vegetable that I can eat”. You watch him pick the cake every single time, and it’s frustrating like, “Oh, you don't get it”. But it's just, his memory wasn't there to make the decision.
Poli: No, I agree. Yeah. So, thanks for that Brigid. Hey, Allan, eventually we're going to end our questions for Brigid. Does anyone have any to wrap up? I know we're going to do a future podcast to talk about the study that my mom was in and being involved in a study. Does anyone have any questions to wrap up about mom in clinic or for Brigid about Mom?
Brigid: I just think an important point to make, you know, the fact that people are universally reluctance to come in a lot of times, it's because their barriers. You know, we're not doing very well with the diagnosis or treatment right now because one is people don’t come in and they attribute the signs to aging. And they think it's just normal aging so why do I have to come in and be evaluated? Or I don't really have a problem. But with the way that the research is going, the earlier on that people come in, we believe, and through all of the studies, that the chances of anything working as a disease modifying treatment, the importance is that people come in early and amyloid starts to build up 10 to 20 years before the onset of memory loss. So, if people are waiting to come in until they have mild dementia, we've possibly missed a window of treatment. So, I think it's a very important point that you made it about when people come in and was it typical a time that your mom came in to see us.
Poli: Yeah. So, the earlier the better. Get them in there. Right. Well, Brigid, we're going to say goodbye to you for a second. Please hang around, and we'll be back. Allan, great to see you. Boni, Trissi, everyone. Thank you again, Brigid.
Allan: Thanks for listening to Alz In The Fam. In the fight against Alzheimer's and dementia, we are all family. Find us at Alz In The Fam on Instagram, Twitter, Facebook, YouTube and on our website alzinthefampodcast.com. We appreciate you clicking that subscribe button on Apple, Google, Spotify or whatever your favorite podcast catcher may be. Alzheimer's sucks, but we're in it together. We are Alz In The Family. Talk soon.