Live Q&A: Understanding Dementia and Nuances in Treatment

Live Q&A: Understanding Dementia and Nuances in Treatment

Welcome everyone. Hello. Um I am here with Dr. Macy and I am Taylor Schuman. We’re going to wait for just a few minutes as we let people kind of trickle in, but excited to chat today. Um we are doing a live Q&A about dementia. Um so it’s going to be a really great topic. If you are here, feel free to drop a hello in the chat. Um we’ll get started in just a second. I see a few of you starting to uh pop in. So welcome. I’m really looking forward to this Q&A. Well, thank you, Taylor. Just wanted to plug in and make sure we have no interruptions. Yes, we’re getting all the technical stuff figured out now. Welcome everyone. If you’re just joining us, we’re about to get started. Um, today we are doing a Q&A on dementia. So, if you’re just joining, feel free to pop in the chat. Maya IC said hello there. Great. Thanks for joining us. Um, looks like we’ve got some some people joining, so we’ll get go ahead and get started. Um, so my name is Taylor Schuman. I am the editor and tech expert for senior.org. And today I’m joined by Dr. Macy P. Smith. Welcome back, Dr. Macy. Always a pleasure. Thank you, Taylor, for having me. Yeah, thank you for coming back. Um, today we’re going to be talking about understanding dementia, um, and kind of the different differences in treatment and types of dementia. Um but first would love to give you a little bit of background about Dr. Macy. Um she is a best-selling author known for her work on dementia competent practices in family caregiving matters. Her real world unapologetic approach to practical caregiving has been published in national and international professional journals and syndicated news articles. She is a licensed gerontology social worker and an award-winning Alzheimer’s and dementia educator with over 25 years of experience coordinating care for aging and vulnerable populations. So welcome Dr. for Macy. Thank you, Taylor. Well, I’d love just to kick it off and ask, you know, what um could you tell me just a bit about your experience working with those who have dementia and their caregivers? So, I’ve been doing this work for over 25 years. I started uh with the Department of Disabilities and Special Needs. So I started working with adults with intellectual disabilities and because you know there were already insults to the brain and people with uh intellectual disabilities were are living longer um they are at higher risk for developing Alzheimer’s disease especially those with Down syndrome. So, I found myself providing care and support to those with Alzheimer’s and dementia before it really was a thing, I’d like to say, because I didn’t even know that that was um a career path to be honest with you. I know. I just uh loved what I did and I saw the evidence of quality of life based on just connecting family members and caregivers and those with dementia to uh relatable, familiar experiences, how it definitely does change the course of how a person engages. And then when I realized that was a thing, um I ended up getting credentialed in the area of dementia competent practices. I became certified as a gerontologist through the National Association of Social Workers with my social work background. And then I wanted to do it more so on an individualized scale. Family members were asking me after I did like a community training or um a talk on dementia care. They wanted to know if I did it for families personally. And I said, “Well, I do now.” And so that that was about 10 11 years ago when I started my practice, Diversified Training Consultants Group, where I provide individualized family care as it relates to caring for someone with Alzheimer’s and dementia. And in some cases, the senior does not have Alzheimer’s or dementia, but it’s the the mere fact that they’re aging in America and the challenges that come along with aging in America and then caring for someone who’s aging in America for family members and caregivers. Um that was just really a part of my the biggest part of my plight in terms of what I do. Everything that I do centers around uh those core groups of people, those living with dementia and their family caregivers. Well, I love that you have taken this kind of individualized approach because as we’re going to talk about today, there are so many nuances in care and and care can look so different based on the individual and their experience. So, I’m excited to jump in and hear about um your experience here. Okay. Um so, we’re going to get started with our Q&A. Dr. Macy is here to answer any questions you have about understanding dementia and the nuances in care. Um, but feel free to ask anything um that comes to mind as we’re chatting. It could be about early warning signs, things about transitioning into care, um, really anything related to dementia. So, you can drop your questions in the chat at any time. I’ll be monitoring those and we’ll we’ll address them as we go. Um, and just remember, you’ll need to be signed into a YouTube account in order to join the chat. Um, we also have some questions we’ll get started with uh, before you guys drop anything in the chat. So, let’s do it. All right. Um, uh, could we start off just talking about what are the treatment options currently available for those living with dementia? Um, and how effective are they at slowing the progression of the disease? Right. So right now, well, first I’ll start off with the treatment for the symptoms of Alzheimer’s or the symptoms of you know vascular dementia because there is no cure for the disease as of today. But usually the doctor prescribes um aerosept and or nmena for someone who has Alzheimer’s or a progressive type of dementia and that is to treat the symptoms of the disease. So the memory loss, the forgetfulness, the agitation, inability to sleep well, to get to sleep and to stay asleep. Um what it does is if the medication is given early enough in the early stages it puts the symptoms so the forgetfulness in a holding pattern it delays the progression of it. So, I might forget your name, Taylor, but I still remember that you’re my sister, right? Um, as the disease progresses, the disease that causes dementia will for um for um example purposes here, we will say Alzheimer’s disease, that disease continues to percolate, but the medications will treat the symptoms. And what that does is allows them a longer quality of life. It gives them the opportunity to stay in their own home and to remain as independent for as long as possible. As the disease percolates and and and continues to progress, then at some point those medications won’t even be effective. They’ll just be token medications. But, uh, what I’ve seen is that family members continue to give the medication to their loved ones. the doctor continues to prescribe it because it’s more so like a a a safety net for family caregivers. They feel like, well, it’s been working all this time. Even though I see, you know, my loved one progressing and it’s going downhill, I don’t want to take them off the medication because it might go faster. So, it’s it’s typically a token medication. But now for the disease, we do have two treatments that have been approved by the FDA and that’s the lacanomab and which is the generic and the dananomab which is the generic and those two treatments have been approved by FDA for individuals with early stages of dementia or mild cognitive impairment. The clincher here is the person has to be in the early stages. So that means the person and or their family would have to seek assistance from the primary care doctor during the early stages. Early stages of dementia and mild cognitive impairment can look just like normal age memory impairment. So they may miss the early signs which is very important that we continue to talk about the early signs of dementia of a progressive type of dementia. So that way not only will the the treatment for the symptoms be effective but for the actual disease now um that we have these two treatments. And I’ll tell you, I think early on when these treatments were approved, the scientists and and researchers thought that there would be significant findings in terms of slowing it down. So when I say it treats the disease, it will it’s it is designed to slow down the progression. So it doesn’t cure it, but it is a treatment. they have seen marked improvement in terms of um the medications slowing down the progression of the disease but it’s not significant improvement and that could be due to a lot of different things. It could be due to I mean everybody is different. When you’ve met one person living with dementia, you’ve met that one person living with dementia. And so they could have other uh comorbid or co-occurring conditions such as diabetes, congestive heart failure that could potentially affect how effective the uh treatment is, or it just could be not as effective as they had originally hoped. But a little bit of hope is better than none at all. and the fact that there are people improving in terms of delaying the progression of Alzheimer’s disease, you know, that is a win and it’s just going to keep getting better and better and better. And now that we have two treatments there, it does bring about a um a significant level of hope that we just didn’t have before. And so the clinicians and the research will continue to study. um those who are receiving the treatment, it just builds on better treatment uh better outcomes, but again it’s not significant according to the researchers, but there is some some marked improvement. So as you mentioned, these are only available for early onset. Um so can you talk about early stages? Sorry, sorry, early stages of dementia. But I’m glad you said that because people will use the term early onset and early stages interchangeably, but early onset is when the person is diagnosed with a progressive type of dementia prior to the age of 65. Early stage could be at any age, but it’s just the beginning uh stages of the disease process. Right. Thank you. I was like, I said that and I don’t that didn’t sound right. So, I’m glad you’re on it. You’re on it. Yes. So early stages of dementia, could you just touch briefly on, you know, how do you distinguish between that, the symptoms of um early stages and just normal aging because you said often they get mistaken for one another. Right. Sure. Again, everybody is different. The very first thing I like for people to understand is knowing who the person was before these changes start to occur. So if it’s the person that’s actually experiencing it, knowing what’s changed for you, knowing what’s different for you, knowing what you were able to do before and what you’re having trouble with now for family members, knowing the person prior to, you know, their experiences now, what were they able to do? What’s changed? What’s causing your concern? Right? So better understanding who the person was. I I’ll give you an example. My mama would always call me my brother. He she would call my brother me. Why? I don’t know. He’s a boy, I’m a girl. But as she gets older, she continues to do it. Sometimes it gets even worse. But that’s not it may be alarming for someone else. Say, “Oh my god, she, you know, she’s forgetting their names. I hope everything’s okay.” That’s nothing new for her. So that’s not alarming for me. That’s that’s something that she’s going to do and she’s going to catch herself. Now, if she never catches herself, then that’s different for, you know, my mom. So knowing the person and know what’s typical behavior for them and knowing what’s not. Once you’ve identified, hey, this is different behavior for my mom, my dad, or my sister. And it’s it’s all it’s always going back to memory and processing and being able to um use their cognitive function to perform familiar tasks. um and remembering birth dates and dates and events and things of that nature. Something could be going on. That’s when you definitely want to get it checked out by the primary care physician. And you don’t want to go in there and say, “I think my mom has dementia.” Because you’re going to be walking out there in the next two minutes with your loved one with with AISP, right? You want to talk with the doctor if your loved one doesn’t feel comfortable doing it because they may not because if they’re in denial, that’s another thing. This is how you know that it. This may be something more than normal age memory impairment. If your loved one wants nothing to do with going to the doctor to figure out why they’re forgetting or why they’re not doing the things they used to do. That for me that tells me that they’ve already been experiencing it ye months or years before. What we know about progressive types of dementia, especially Alzheimer’s disease, the person shows signs and symptoms 15 to 20 years before actual diagnosis or before anybody else notices it. And so if they want nothing to do with going to the doctor to figure out what’s going on with their memory and if they’re really putting up a fight and very resistant to it, that gives me an inkling that they may already been dealing with it. So that lets you know that there is something going on and they may not want to go to the doctor. They may not allow you as a family member to go to the doctor with them. But you can always call the doctor’s office and provide information to the nurse or to the doctor. They won’t be able to give you any information, especially if you’re not on that HIPPO form. So make sure you talk with your loved ones about getting on that HIPPO form. But you can always provide information. And at some point in time, they gonna have to go to the doctor for a checkup because that’s typical and that’s routine. And that way the doctor can actually assess anything that’s treatable that you want the doctor to assess any treatable causes of the forgetfulness and the memory loss and the and the behaviors that you’re seeing because it could be a vitamin deficiency. It could be a urinary tract infection. It could be dehydration. It could be depression. It could be lack of sleep. And the list goes on and on and on. But you want the doctor to rule out treatable causes. Don’t slap a label of dementia on my loved one until you’ve done all of the tests, all of the assessments, and also make the referral to a neurologist because it’s a neurological condition to do the scans. Um they can also now they also now um Taylor have a blood test to detect Alzheimer’s disease. And so a primary care doctor can do the Alzheimer’s blood test or the neurologist can do it, but we typically uh it’s new. So because it’s a new medication, I’m sorry, a new um diagnostic test, insurance is not covering it because they have to see proof of concept. Of course, they got to see the data. Medicare is not covering it. And so it’s best to get the Alzheimer’s blood test. I’m gonna give you the actual name of that blood test in a minute. The official name, it is called the Lumi Pulse. The Lumi Pulse blood test to detect Alzheimer’s disease. Um, we we would like for people to get this test done in the early stages of seeing cognitive impairment or cognitive loss. Right now, insurance is not covering covering it. It’s hopefully as they, you know, get the data and see that it is um a a precautionary tool for early detection, they may start covering it. But right now, it’s it’s costing anywhere from $500 to $1,000. Wow. Which that’s still less than the PET scans and the sp the spinal tap, but Medicare and insurance will pay for a PET scan if the doctor need deems it uh medically necessary. And just think about our individuals. I mean, who wants to have a PET scan done? Who wants to have, you know, an MRI done or CAT scan? I mean, that’s scary, especially if they’re claustrophobic and that they don’t like closed spaces spaces. And then there is exposing them to radiation as well. So, you want to limit that as much as possible. Um, so, uh, there is definite, um, hopes in terms of determining what’s causing the memory loss and the forgetfulness. So when you determine that this is something that’s concerning because if it’s concerning for you as a loved one then it is a concern and it may be something more than normal age memory impairment but if it doesn’t affect their life and it doesn’t affect their dayto-day. They can recover very quickly when they’re forgetting things. Um it’s probably normal age memory impairment in terms of forgetting people’s names, forgetting birthdays, even birthdays that they’ve always remembered. now they’re forgetting them, but it may be because they haven’t seen the person in a long time. You can kind of um accommodate for why they’re forgetting these things. But if that forgetfulness becomes progressively worse and prog and more progressive and more often. So now they’re forgetting not only my distant nieces and nephews birthdays, now I’m forgetting my children’s birthday. So it’s getting progressively worse and it’s happening more often. So that’s kind of how you can tell the difference. and it’s beginning to impair their daytoday routine and what’s typical for them. That makes sense. Uh so James is asking about this blood test. One of our viewers wants to know how reliable is this test? Um excellent question. It is not 100%. Um there is still false positives and false negatives. I mean because you could test positive for it and basically what it’s saying is the blood test is saying that this person has uh signs of amaloid plaque amaloid protein plaque and that’s what’s associated with that’s the hallmark of Alzheimer’s disease that the amaloid plaque um so it’s not 100% however it is an indication if you if you do test positive for it now that tells you that you need to go and get probably get a PET scan probably get cognit test done. So, it’s not the one and done, but it is a part of a plethora of tests that you would get to make a determination as to whether or not Alzheimer’s disease is causing this memory loss. But again, you don’t just get this test as a part of your um your your medical um routine exams, as a part of your physical. You have to be experiencing cognitive impairment or memory loss and you can get it done as early as 55 years of age. That’s great. Um so we’ve talked it sounds like there’s some great advancements. We’ve talked about this new blood test. Um we’ve touched on these um medications for treating um the symptoms of dementia. And um it looks like Maya has a few questions. We addressed this first one talking about the early signs of dementia. Um, and she’s also wondering how much can these uh medications potentially delay the progression of symptoms. So, I’ll tell you based on experience, both personal experience and professional experience when we talk about the progression of the symptoms, right? I don’t have any data, professional data or empirical data on the um actual disease because I have not and I’ll get to this in a minute. I have not worked with any uh patients who have actually received that treatment but for the aerosps and then the minda for the treatment for the symptoms I have seen great um responses and great results in terms of slowing down and delaying the progression of the dementia the symptoms um but it’s if there if it’s given in the early stages now if they start to take the medication and they’re in the mid to late stages it may not be as effective but if they start taking the air and typically the doctor prescribes the aerosep first in the early stages um I only had two people actually and I’ve served hundreds of of of patients that had uh side effects from the aerosept they they could cause nausea nausea so they could cause um an upset stomach and I had one who would have hallucinations So they could not take a and so the doctor prescribed nmena. Typically nmena is coupled with ace as the disease progresses. So when they get to the middle stages the doctor will leave them on the aerosep but will add the nmena it treats the same things but it goes about the treatment a different way. Just to put it in layman’s terms because I can’t put it in medical terms. You get that medical jargon. I hear it then I got to break it down to where I and my people can understand it. So it it takes a different route but it’s addressing uh the same symptoms if that makes sense. Um so I have seen great promise in that Maya if given in the early stages for the symptoms but eventually those medications are only going to be token medications as the person um approaches end of life late stages and end of life. That makes sense. I love I love breaking things down into layman’s term. None of us here probably too complicated. So I love that. Two medications with different routes to the same end result. Yes. Um okay, another question um on a different topic from Sherry says um will all people diagnosed with Parkinson’s eventually develop dementia? Excellent question. That answer would be no. Um, I’ve had patients who had Parkinson’s only and and never develop dementia. Now, if they live long enough with Parkinson’s, they may, but that’s all in how long they they live in longevity. And then I have some that has um Parkinson’s related dementia within, you know, the two years that they’re diagnosed, which in and and that means they they were they were diagnosed with Parkinson’s uh disease first and then they later on developed uh dementia symptoms. They developed cognitive loss and memory loss and confusion and inability to perform familiar tasks and judgment and communication. So that’s when it’s considered Parkinson’s related dementia. Um, and so no, all people who have Parkinson’s won’t develop dementia, but again, if they live long enough with it, they may. That’s a really good question. Yeah, great question there, Sherry. Um, so we’ve talked a good amount about, you know, what medications are out there. Um, so I’d love to talk about kind of other, um, ways of treating symptoms of dementia. So how um do you approach the balance between medicationbased and non-farmacological interventions in dementia care? So I I prefer communication over medication because when we talk about someone living with a progressive type of dementia, it is totally different for someone who has mental illness. And I often times have to fight to differentiate between the two because a lot of people, you know, just due to lack of understanding and education about it, um they’ll invite me to talk about dementia when the topic is mental health. So I use that as an opportunity to dispel the myths and explain the differences. Um and so because mental illness um someone with mental illness has to have uh medications to treat the condition. Someone with dementia not necessarily but it also depends on what type of dementia they have. Take Alzheimer’s for example. Medication would be treatment of last resort. Um because whenever someone and typically you look at medication when someone is having behavioral challenges. If those behavioral challenges surround mom not accepting the fact that she has dementia every time you tell her she don’t need no medication for that. Right? That is all in the communication. Why does she need to know that she has dementia? Why does she has why does she have to be reminded? That’s more so a communication factor for me. So when families come to me and their loved one is having some major behavioral challenges and it’s difficult for the caregiver to provide care because the person is very mean. They’re very aggressive. The first thing I ask is what is your approach as a caregiver? How are you communicating with her? What are you communicating with her? What are your expectations for someone whose brain cells are deteriorating? Right? So, I always look to environment and that includes the caregiver and how they’re communicating first. Making sure that it is a person- centered approach and the person meaning the patient, the person with dementia, not the person providing the care. So, not the caregiver. It’s not a caregiver centered approach. It is the person centered approach. And as the disease progresses, as you understand, there are going to be limitations with communication. they’re going to get very frustrated because the way they are communicating with you, you’re not understanding because you’re not giving them what they need. So, if I’m asking you for something and I’ve been asking for it for three days now and I haven’t gotten it yet because you don’t understand how I’m communicating and the words that I’m using, I’m going to get a little more aggressive. You know, my tone is going to get a little bit louder. You know, I’m going to my inflection is going to be be a little bit more stern. That’s with anybody, whether you have dementia or not. Think about your significant other. You’ve been asking about this pocketbook for three years now and you still don’t have a purse. You sent him the link. You even said, “I’m gonna pay half and he still ain’t getting that purse, right? Oh, wait. You know, your your tone is going to get a little bit more aggressive, right? I’m a little bit more assertive.” The same thing with someone who’s living with dementia because the way they are communicating with you as the family member a you don’t understand the words that they’re using because they’re using different words to describe familiar things. For example, if they want chicken, fried chicken, because they love fried chicken, they want fried chicken, but they’re saying they can’t, you know, express what it is that they want. They can’t say fried chicken. They may say, you know, I want the, you know, um, the leg part, you know, I want the I want the leg part. Um, and in your mind, you’re thinking, okay, the leg part. Oh, they must want baked chicken or they might want ham or or or what have you. You’re trying to think about what that, but they want fried chicken and they getting real frustrated. They don’t want this baked chicken. They don’t want this ham. They don’t want this beef tenderloin. They’re pushing it out of the way. They’re turning the the plates over. They’re knocking food out of your hand and you’re saying, “Dad is aggressive. It’s aggressive. Doc, I need something to calm my dad down because he is violent towards me. He want fried chicken and you’re not g giving him that because he’s not expressing it in a way that you understand. So, it’s trial and error. So, don’t just assume that they it’s because of their dementia that they’re having these behavioral outbursts. It may be because you’re not giving them what they want, what they desire, what they need. I had a lady whose mom loved ice cream. That’s all she wanted to eat was ice cream. The daughter did not want to give her ice cream because she can’t eat ice cream all day. She has to eat a well balanced diet. She has to have starch. She has to have vegetables. She has to have protein. All says who? Oh, you going to buy the little plate diagram from, you know, DH. I get that. But we talking about somebody who has dementia and it’s progressing and so she knows that she loves the sweet. She loves the coolness and the refreshing. And so the daughter was not giving it to her. She was trying to force her to eat other things. Not force her physically but present to her other things. I mean if she would get cussed out daily and she was hurt. Her feelings were really hurt because of how mean her mom was to her. And I said, “Well, you know you could easily solve this problem, right?” And she said, “How?” I I said, “Does your mom have diabetes?” She said, “No.” I said, “So, why are you not giving her the ice?” I said, “What kind of ice cream does she like?” She said, “She likes the butter pecan ice cream.” I said, “Okay, vitamin D, calcium, the vitamins in the pecans. What’s the problem?” And she was like, “Well, I just thought I said, “That’s the problem. You’re thinking too much, right? You’re just thinking about it too much. You’re you’re over complicating it. You want to ensure that she’s eating, right? So, what about the ice cream? Does she love it’s it’s sweet. It’s cool. You can turn any food item into a a smoothie, right? So, try that. So, that way she can she can get her um nourishment, but you don’t want to fight it. Give her what she wants and diversify that desire in any way, form, or fashion to meet the needs of the person whose brain cells are deteriorating. That’s so good. And I wish I could eat ice cream all day every day. That sounds amazing. You know what? I’m not even I like ice cream. Okay. But I ain’t got to I don’t have to have it. I don’t have a sweet tooth. So that I guess that’s a blessing for me. Yeah, you’re a lucky one. But Taylor, when I want something sweet, like when I want that um milkshake, strawberry milkshake with the whipped cream and the um cherry on top from Chick-fil-A, I’m going to get it. So good. Nobody can’t tell me anything differently. And so, um, I do know that when people are diagnosed with a progressive type of dementia, ideally, especially in the early stages, while they can still communicate and make choices for themselves, you want to introduce them to a well-balanced diet, a healthier diet, you know, uh, cutting back on the, uh, sugar, the complex sugars, and providing them with a healthier option such as, you know, low fat, low salt, the baked chicken as opposed to the fried chicken because they can still communicate and they can still make choices and they understand that this is a healthier way of eating. What we know, Taylor, is that when you introduce them to a healthier diet option that it could significantly reduce the progression of the symptoms that we see and possibly of the actual disease process. That’s not a guarantee, but we know when you um make available the unhealthier options, it does speed up the disease process because you’re not healthy. You know, when you’re healthy and you’re vibrant and you’re staying active, it does reduce the pro the progression in terms of the timeliness of the disease process uh significantly. Everybody is different, but you know, if you can make these healthier choices and make available these healthier options to hopefully reduce the um the progression time of the disease, and you want to do that, but as the disease progresses, they want what they want because they’re they’re very much concrete thinkers and it’s our responsibility to to give them what they want. As long as it’s not causing any harm, it’s not disturbing, why not? Yeah, absolutely. That’s and and I that’s such a good point about diet being so important. You know, I feel like that’s something we don’t really talk about a lot as as a person of the general public. I don’t really think about diet in relations to dementia, but so important with everything. Do you I mean, you know, I’m gonna get on my uh my soap box. The reason I feel, and there is data to bear this out, we don’t talk about lifestyle changes enough is because you make the decision to live a healthier lifestyle. And that’s free. Ain’t no charge for that. So, if they can’t make money off of it, then you might you’re not going to see it plastered everywhere. You’re not going to see it broadcast everywhere except for on senior.com. Yes. I’m sorry, senior.org. Right. Yes. What you choose to put in your mouth will determine how how you will live your life. Right. Because the foods that we eat and the lifestyle we live could potentially bring upon inflammation. A lot of our chronic illnesses are tied to inflammation. How do you how does your body get inflamed? How do you get inflammation in your body? by what you eat, by what you breathe, by what you drink, all that is lifestyle. If you can make a decision, and I have to say if because some people live in communities where they have no choice about the water they drink, they have no choice about the air they breathe. They have no choice about the foods they even eat because there are food deserts. But if you have the opportunity to make better choices in terms of what you put in your mouth and in your body, then make the change as early as possible. And I’m not telling you not to eat bacon at all. I love bacon, but I limit as that’s processed meat and that’s high salt. So I limit the amount of unhealthy food items I eat. My mom who’s well in her 80s, I mean, not on any medications, living her best life, she eats oatmeal every day. Like she like that’s her dinner. She’ll eat oatmeal and I’m like, “Ma, what you eat for dinner?” Oatmeal and sausage. Like oatmeal and sausage. Like that’s good eating in that country, right? And so you when you think about it and what we choose to eat is very much cognitive. So because you make the decision as to what you desire and then you can make a conscious conscious decision to say I really want this fried chicken but I know it’s not good for me and I just had fried chicken last week. I’m gonna take a pass on it and I’m probably if I if I’m craving fried chicken because I uh I live to eat. I don’t eat to live. Um and I hope I’m not flippant when I say that. I enjoy food, so I don’t restrict myself. However, I do pace myself, you know. Um, in my mind, I say, Macy, you know what fried chicken tastes like. You do not have to have that today. You can get it next month. So, I don’t eat beef like I used to. I love hamburgers. I love hamburgers. I can tell you I the last time I had a hamburger had to be one or two months ago. two months ago because I know it’s not eating that red meat all the time is not healthy for you. It affects your colon. Um you know it it affects other things. Um and everybody is different but I know be me and beef don’t work well and my your body will tell you what you need and what you don’t need and you have to listen to your body and that’s all of us but maintaining a healthy diet and a healthy lifestyle is paramount to overall quality of life and quality health. Yeah, absolutely. So, a healthy diet and lifestyle are super important, it sounds like, especially um early stages of dementia for slowing the progression of of symptoms. And um what are some other ways that um caregivers and loved ones can provide um you know ways to manage or treat behavioral symptoms? Maybe things like anxiety or delusions. I know we touched a little bit on agitation. So if a person um has dementia with Louis bodies and I’m going to speak on delusions and hallucinations halluc hall hallucinations is one of the marked behaviors that we see for someone with dementia with Louis bodies. That person may be prescribed mental health medications because of the hallucinations not because they have dementia with Louis bodies but because of the hallucinations which can be very very problematic. It could be um dangerous behavior because now they’re responding to the hallucinations as if they are real, what they see, what they hear or what have you. Outside of that, in terms of treating behavioral aspects of the disease process, and I have to say of the disease process, because if the experience or the situation was presented to someone who does not have dementia, they’re able to problem solve, make judgment, and make a good decision. someone who has a progressive type of dementia, the part of the brain that manages rationalization and judgment and restraint, you know, not saying what you want to say and doing what you want to do, it’s dissipating. It may no longer be there. And so what comes up comes out. So they don’t mean to hurt your feelings, but that’s all they got. And so these bad words that they’re using, that’s what they know because it’s in the back of the brain. So they’re going to pull it up and it’s going to come out. if they don’t know how to articulate uh their words. And I would tell my husband this all the time. I said, “People who cuss a lot, they don’t have a wide vocabulary.” Uh so they go to them cuss words because they can’t articulate. And that’s just with anybody. So someone who has dementia, who does not have the ability to process words and put statements together to articulate, I’m hungry. I’m ready to eat now and I want fried chicken. They can’t put all those words together, but they still have the ability to act out what they want. And that may come with using bad words. That may come with pulling your arm. That may come with, you know, hitting the door or um uh acting out or it could come with acting in. That’s where you see depression and isolation, isolation, not being receptive or willing to take their medication to go to the doctor to get dressed. And so the way in which you treat that in terms of always start with environmental changes first, starting with how you communicate with them, better understanding what they desire and what they want. um not using uh words that are very restrictive like you can’t, negative words like you don’t, you won’t, you will never. Um because that comes with a certain inflection and if you are presenting the information in a negative way, they’re going to respond in a negative way because they mimic what they see because their brain cells are deteriorating. So they don’t have the ability to process, rationalize, and reason. And so your approach needs to be positive. The words you use need to be positive. The tone you use, your body language needs to be positive. The environment, is it too hot? Is it too cold? Some people get an attitude when it’s hot. That’s my sister. You already know. If we go to the beach, she gonna have an attitude because it’s going to be hot, right? If it’s too cold and they can’t, you know, their body temperature doesn’t warm up. They’re frustrated. They’re annoyed, right? So, it’s going to come with some behavior challenges because the environment is not conducive to a relaxing, welcoming, comfortable um environment. Is it too dark? Are they seeing shadows? Is it too loud? You know, you’ve been around people with loud music. Now, when we were younger, you still young, Taylor, but I know when I was bumping that music, I want it loud in my ears. Now, if I hear my daughter’s music who’s 16 in my yard, I’m running. Cut that music down. concentrate, right? So, they can’t concentrate when it’s a lot of people in the house, there’s a lot of noise, the TV is playing, the radio is playing, the kids are talking, they’re going to get frustrated. They may have behavioral challenges because the environment is not conducive to what they enjoy and what’s peaceful to them. Even um the pictures on the walls, the patterns in the floor, you know, they’re trying to make sense of the world around them. And the more information in their space, the more anxiety, the more frustration, and the more irritable they’re going to be. Yeah, that makes sense. Um, so I’m also curious, you know, we’ve talked about a lot of ways that you can treat it through just looking at behavior and how to help them and support them and communicate more effectively. Um, but on the flip side, what are some common treatment mistakes or myths that you have seen families fall for and how can they avoid them? So when you see the behavioral challenges, uh it causes problems for the family. Um maybe the person is in distress and they don’t sleep and they’re constantly pacing um rumaging through things and it’s causing them to be frustrated and it’s causing the family member and the caregiver to be frustrated because they can’t sleep because this person is not sleeping. Over-the-counter medication is a big no no unless prescribed by the doctor. I I’ve had families give their loved ones benadryil. You know, you you’ve seen that um back in the day, and I got to say back in the day because it’s like a old remedy. You know, parents would give their children a low dose of benadryil to help them go to sleep. These are not children. These are adults who have a cognitive impairment. You got to figure out why they’re not getting asleep. Stop giving them benadryil. talk with the doctor about a low dose of melatonin, which is a a natural over-the-counter medication um that the doctor may prescribe. I’ve had one person, one of my um individuals, he was taking three melatonins a day. That was for him. Now, another one, they just going to take one and they’re good. Just depends on the person, which is why you have to have follow along even with over-the-counter medications with a primary care physician. Another mistake is mental health medications I have had where some family members would be taking um uh an anti-anxiety medication and would give their loved one of their anti-anxiety medications because they’re distressed and they won’t sleep and they’re, you know, repeating themselves over and over again. They’re pacing, you know, they’re wandering away and they want them to be asleep and to be calm. huge mistake. Number one, you can’t do that anyway because that’s sharing your medication. And number two, if you’re giving someone a a behavioral health medication that’s going to mess with their neurological functioning for someone who already has neurological functioning fading, it can cause irreputable damage to the point where I’ve seen where the person no longer walks. Wow. They can walk, but they don’t walk because there is a disconnect now between, you know, their brain telling their legs that it’s now time to walk and to move. And part of that is the dementia, but the other part of that is that behavioral health medication that you gave to your loved one that was not prescribed by the doctor. Right? Another um pitfall is asking the doctor to prescribe you something for your loved one to get them to calm down and to go to sleep. The doctor may then prescribe uh an anti-anxiety medication. You want to use those medications with caution because you’re not supposed to control their behavior. What you’re supposed to do is control your behavior. you’re supposed to create an environment and create a space whereas this person who’s living with dementia can do well, right? And when I say this person, again, you have to know what’s important to this person. You have to know what they enjoy. You have to know what’s important to them. So that way you can create the space. You don’t give them medication to control their behaviors because it’s going to affect their quality of life. We know that it puts them at higher risk for having a stroke. We know it puts them at higher risk for mortality and that’s not what you want. You want them to have a good quality of life with dementia because they can and so you want to stay away from the medications as much as possible unless they have dementia with Louis bodies and then the doctor may prescribe a low dose and it shouldn’t even be the primary care doctor because this is a mental health medication or behavioral health medication. Ideally, if they’re not seeing a psychiatrist, which they should not see a psychiatrist, if they don’t have a mental health diagnosis, but the neurologist would probably be the one to prescribe the med medication. Um, even more so, a geriatric neurologist or a geriatric psychiatrist that may be treating this particular behavior that’s problematic and that’s dangerous. And then it’s going to be the lowest effective dose. and then it’s going to be for a time limit to address those behaviors and then the doctor will need to taper them off. Another common mistake, you don’t want to stop giving them a medication that the doctor has given them um because you feel that it’s working and they’re better now. especially if it’s a behavior health medication, you can’t just stop them from taking it because it can cause major health complications and major behavior health complications in terms of um mental health changes um challenges that they may not ever be able to recover from. Um that’s like abruptly. You think about somebody that’s going through detox. You know how they you know respond to getting taken off that drug cold turkey. Someone with dementia could have the same withdrawals and it could it could prove to be deadly. So, you want to talk with the doctor about all medications that your loved one is taking or they may be in line to take. But you really want to describe the behaviors to the doctor as opposed to saying just give me something because typically those behavioral health medications are more so for the caregiver than they are for the patient. So, important to be very careful and very communicative about medications. It sounds like for sure. And speaking of that, James, one of our viewers says, “My dad’s home remedy for everything growing up was robbitessen or tussen to him.” Okay. Well, uh yeah, I mean that’s um that’s one of the the least restrictive medications out there. So, but again, over the counter medication, cough syrup and all that stuff, it needs to go through the doctor. for anyone over the age of 65 with dementia or without, don’t take over the counter medications without talking to your doctor first and get, you know, get involved with the um electronic medical record so that way you can communicate with your doctor seamlessly. They typically respond quicker to an electronic um communication than if they have to actually call you back and talk to you. Yeah, absolutely. Um another question from a viewer. Uh Maya says, “Can hearing loss contribute to dementia and can treating hearing loss, for example, with hearing aids help or slow help slow or prevent cognitive decline?” Excellent question, Maya. So, we do know that loss of hearing can contribute to the development of dementia and that is because if you are not hearing well, then you are not engaged as much as you can be. We know that staying engaged, being engaged, and being active in your community and in your environment, that’s a part of the lifestyle changes and the lifestyle choices I was talking about. That keeps you engaged. It keeps your mind um moving. It keeps your neurons firing off. It keeps your your brain building. So, that reduces your risk. If you’re not hearing well, then you’re not going to be as engaged. You’re not going to be as active. So those neurons are and those neurotransmitters are not going to be firing off and building that cognitive reserve as much as it could be. So it does increase your risk of developing a progressive type of dementia. We also know that having dementia could also affect a person’s senses. It could affect hearing loss. So it’s vice versa. So uh be sure that if you are not hearing well, get you some hearing aids. They got some um sleek ones now that you don’t want people won’t even know that you have them in unless you tell them. Um so definitely make sure that you have the tools in place for optimal hearing. Excellent question. Yeah, absolutely. We talk a lot about hearing aids on Senior Living and like you said, there’s so many options for different lifestyles. So, um definitely worth checking out if you feel like your loved one is is asking, “Huh?” a little more than Right. Right. Right. Right. And just I swear my daddy needs him. I I don’t know. He he always had trouble hearing and I’ll say this might be TMI but we living so we going to talk about it but I also have this problem. He’ll have a wax buildup like it’ll build up like you have to like do ear flushes maybe like every three every three to four months I’ll have wax buildup too and I’ll have to get my ear flush probably every so many years. So he’s always had issues with hearing and that’s due to his the wax buildup. But now, dude, you need to get you some hearing aids because if I have him on speakerphone, it doesn’t work. And then I have to put the phone up to my ear. I’m like, “Daddy, I’m trying to cut this radiation to my brain, but I’m going to need you to get some herinades.” So, um, he’s definitely going to get hearing aids. And I’ll tell you too, from the pandemic, a lot of our seniors are not getting out as much as they used to from the, you know, from the pandemic. And my dad is one of them. So when he goes out somewhere, I’m like, “Oh, you are outside.” I tell my daughter, “Grandpa was outside this weekend.” I was like, “You better go, daddy.” And he said, “Yeah, somebody had an extra ticket, so I decided to pop on in there.” So, um, staying engaged is very important. Um, you can be engaged via your computer and via your phone. That is fine, but that’s not optimal. You want to be able to hear people, touch people, love on people, have that emotional connection, um, you know, energized because it it brings about the the different chemicals firing off in your body and in your brain. It builds that cognitive reserve. It helps you to be mentally clear and mentally strong. And so, you want to continue those lifestyle choices more so on the positive end than anything at all. Yeah, absolutely. Getting outside, touching some grass every once in a while. Yeah. Shoes off. Taylor, do you go outside with your shoes off at all? I do. I love it. Are you do like in the country? That’s what we do, baby. That is the best thing ever. I think I’m going to do that today. So good. You should. I love it. I practice what I preach. Yes. So, as we wrap up, just one last question. Um, what are some practical ways caregivers can stay, you know, informed and empowered to make the best treatment decisions for their loved ones possible? I love that we’re closing on that question. If you don’t understand how to provide care before you leave that doctor’s office, don’t leave that doctor’s office. You want to be sure as the senior and also as the caregiver that you understand completely how to provide care along the journey. You want to know what that journey looks like. If the doctor is unable to provide you with what you need because it’s the medical model and when you’re caring for someone with dementia holistically, it’s medical, it’s social, it’s environmental, um it’s emotional, it’s spiritual. So you want to make sure that you have a provider for each one of those domains. You want to be sure that you have the medical provider that you can reach out to. You want to make sure that you have the social provider that you can reach out to like myself, licensed social work or geriatric care manager. So that way that person can always connect you to tangible resources such as respit and respit vouchers. Then you want to make sure spiritual that you have that connection to be sure that person is whole spiritually. Make sure that you’re whole spiritually and mentally as well. Check in with your therapist as a caregiver. Check in with your, you know, your life coach to be sure that you are staying grounded because you have this person that’s leaning on you for everything or these people leaning on you for everything. Your shoulders your shoulders only so strong. It’s going to give out. So, you got to have somebody and have a team that you can lean on as well. So, just be sure that you’re connected to each one of those areas of the uh continuum care system so that way you can always stay connected. And if you have a question, you want to reach out to the Alzheimer’s Association. They have a representatives 247. Definitely come over here to senior.org, head over to my YouTube channel, just ask Dr. Macy. I am sure you will be able to find something with these trusted resources. If you Google it, you’re gonna get a whole bunch of information. Some of it is good, some of it is not good. A lot of it is sponsored. But when you have senior living.org, when you have just Ask Dr. Macy, when you have the Alzheimer’s Association, when you have the department on aging, those are four key resources that you want to be sure to connect to. You can even connect to Lisa’s Care Connection. So, there’s a physical um center here in South Carolina and a physical center in California, but they offer a multitude of support groups and support options uh virtually. So, you can head over to their website, uh leiscareconnection.org. So, those are five trusted resources. You are bound to get what you need. But if you have a medical question, you know, ask your medical team, make sure you’re connected to the um electronic medical record. But if you’re not getting what you need from them, continue to ask, but head over to one of these resources. We’ll be able to get you what you need for sure. Yeah, absolutely. I love that you point that out. We’re always here. Check out just ask Dr. Macy. Her YouTube channel is amazing. Check out Senior Living. Um lots of great resources out there. Um and speaking of which, I wanted to share with you guys we have a caregiving course. So, if you’re new to caregiving, if you’re looking for more information, um this is a great way to check it out. It’s also in the comments in our YouTube video, so you can click the link if you don’t want to scan the QR code. Um, and so we are so thankful that you are all here. And another resource, um, for those of you that are here, please don’t just leave this conversation and, you know, forget about it. If you want to connect and ask questions of experts and connect with other people who are maybe caring with th for those with dementia, um, you can join our caregivers corner, which is our Facebook group. Um, it’s a really great place for support and additional resources like the ones that Dr. Macy mentioned. So, thank you guys so much. Thank you, Dr. Macy, for being here. Thank you for having me always. Thank you for being here. Absolutely. All right. We’ll see you all next time.

Join us for a live Q&A with Dr. Macie P. Smith, a senior care expert and dementia educator, to learn more about dementia and the nuances in treatment.

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