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How To Stage Dementia To Immediately Understand Challenging Behaviors

Have you ever wondered why each person with dementia seems so different? Or why doctors often dismiss your concerns as just part of the disease?

This episode sheds light on these frustrations and offers a practical approach to understanding and managing dementia behaviors.

The Importance of Staging Dementia

Staging dementia can help you understand challenging behaviors better. It’s a way to categorize the different phases of the disease, making it easier to anticipate and manage changes. Knowing the stages can prevent the feeling of hopelessness when faced with unpredictable behaviors.

Early Stage Dementia: Independence with Support

In the early stage, individuals with dementia can still do many things on their own. They might need reminders or occasional help, but they largely maintain their independence. This is a crucial time for caregivers to provide support without taking over. Think of it as walking beside them rather than leading or pushing them.

Middle Stage Dementia: Increasing Assistance Needed

As dementia progresses to the middle stage, your loved one will need more help. They might struggle with daily tasks and require verbal cues to complete activities. This stage is marked by a decline in the quality of tasks they perform. Caregivers often need to step in more frequently to ensure safety and proper care.

Late Stage Dementia: Full-Time Care Required

The late stage of dementia is when individuals need constant care. They might not understand instructions or be able to perform basic tasks without assistance. This stage requires caregivers to be hands-on, helping with everything from hygiene to feeding. Safety becomes a primary concern, and round-the-clock care is essential.

Common Challenges and Solutions

Each stage of dementia presents unique challenges. In the early stage, forgetfulness and minor disorientation are common. As the disease progresses, behaviors like anxiety, agitation, and even hallucinations may emerge. Understanding these patterns can help caregivers respond effectively and compassionately.

Faith and Dementia Care

A significant aspect of this podcast is integrating faith into caregiving. Embracing a Christian perspective can provide strength and guidance. The belief that a loving God is present in this journey can be a powerful source of comfort and perseverance.

Listen to the Podcast

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

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Introduction to Dementia Challenges

[0:01] Have you ever wondered why do people say if you've seen one person with dementia you've seen one person with dementia or have you wondered why it is so frustrating when you go to the doctor and you have a concern about a person living with dementia and they tell you well it's just their dementia, there's nothing you can do about it. Has that ever frustrated you to the point that it frustrates me? Because as a family caregiver, getting that response from a person who is supposed to help me navigate and decrease the burden that I carry as a family caregiver has never been helpful because it sets us up for failure because if the professionals can't figure out how to help me, how am I supposed to figure out how to make this easier? So I invite you to listen to today's episode 128 on how to stage dementia to immediately understand challenging behaviors so that we can make your burden easier for you.

[1:26] Have you recently found out someone you love has dementia? Struggling to wrap your head around how to be a Christian caregiver? Searching for answers by joining countless Facebook groups but find them toxic? Learning how to cope with dementia feels difficult, but learning a Christian caregiving worldview can be easy. Hey, brother and sister in Christ, I'm Lizette, occupational therapist, pastor's wife turned dementia coach, and a daughter of dementia. In this podcast, you will learn the truth that the way to make dementia care easy is your faith. Knowing that a loving God has decreed this hard providence in your life makes all the difference. Here you will gain skills. You will be challenged by what God says in his word about caregiving, and you will learn exactly what dementia is and is not. Find clarity and certainty from God's word so you have perseverance for this journey. Use science-backed solutions and biblical principles to redeem your time. Praying this blesses you as we dive into dementia from a Christian perspective. Let's glorify God despite dementia.

Empowering Christian Caregivers

[2:53] What's up, Christian caregiver? It's Lizette, your dementia mentor, and you are listening to Dementia Caregiving for Families. It's the show where I teach Bible-believing Christians how to ease the burden of Alzheimer's and dementia care by speaking dementia and planning ahead so that you can decrease your stress and get back your time despite the dementia diagnosis. In today's episode, we are going to talk about how to stage dementia to immediately understand challenging behaviors.

[3:35] And I know that that is one of the things that many, many people tell me is the hardest part for them about a dementia caregiving journey. Are these what the medical world and what society calls, quote, unquote, challenging behaviors. So I thought it would be helpful for us today to talk about staging dementia, what it means, and how it impacts how we understand the things that we see people living with dementia sometimes doing. So why do do we frequently say, or why is it one of these things that is often said related to dementia?

[4:25] The, well, if you've seen one person with dementia, you've seen one person with dementia, or the statement that is frequently made to a family member who is struggling with some sort of a change that the person living with dementia is experiencing, and the doctor or the nurse or someone says to them, well, there really isn't anything we can do about that. It's just their dementia. And I know from a practical perspective that when that is the answer that you as a family caregiver get related to what it is that you're trying to cope with on a daily basis that that is really not helpful. It makes you feel hopeless and helpless and.

[5:19] You feel like where are you going to get the answers for the specific challenge or the specific struggle that you were going through if everybody keeps telling you in the medical model or other people tell you, well, that's just dementia. That's the way it is. It's going to continue to get worse or there's nothing you can do about it. It makes you feel like you want to stick your your head in the sand and just say, oh my word, I can't do this. And I think that's part of why so many people struggle with dementia caregiving because there's this misinformation or this whole school of thought that says dementia is not predictable.

[6:11] Well, I serve a God of order. I do not serve a God of chaos. And I believe firmly that dementia doesn't have to be so confusing at all. And one of my favorite, favorite passages in the Bible comes from James 1 verse 5, where it talks about, if any of you lack wisdom, let him ask of God who gives to all generously and without reproach, and it will be given to him. And on a personal note, one of the reasons that's one of my favorite verses in the Bible is because when I was 21 years old, my grandmother, who actually passed away with some form of dementia in her later years, I know that we do not need to be confused about dementia because dementia is... Somewhat predictable because we serve a god of order and the example I always use with people is.

[7:21] We've all seen children and every single child is unique and different but we all know that they're children and we all know that they are going to grow up in a fairly predictable way They don't go from a baby to a bird. They follow a normal chronological growth pattern. Well, people who are living with dementia, and I actually contend that anybody who is at the end of their life with some sort of a process that we go through as we're passing away, all follow a fairly predictable process as we are getting ready to go meet our maker. And it's a hard conversation to have with people because nobody wants to talk about the fact that we're all going to pass away. Well, unless the Lord comes, we're all going to die at some point or another. Some of us just know that we are closer to passing away than others. I'm going to be 54 at my next birthday, but I'm not guaranteed that I'm going to make 54.

[8:39] I could walk out today and have a car accident and not make my 54th birthday. And that would be a sudden change and a sudden death. So I wouldn't necessarily go through a normal death and dying process. However, most people, if they live to be most of their life, unless they pass away suddenly in their sleep, most people.

[9:10] Will go through a very predictable way of actively dying, of dying. And the reason I bring this up is because we have made it such a taboo subject to talk about death and dying that people don't want to talk about it related to any death or dying process. But I'll use a good friend of ours from church who passed away about two years ago. From her diagnosis until the time she passed away was a little over five weeks. And even though her process was significantly constrained into those five weeks.

[9:54] The last week of her life very, very much looked like a person who was quickly passing away with dementia. She didn't go through the process in an extended period of time, but she followed a very predictable path of actively dying until she passed away that we don't necessarily think looks the same as a person living with dementia, right? But when we understand that we serve a God of order, we serve a God of not of confusion, that there is order to even our death and dying process, then it makes it easier for us to understand in terms of dementia. One of the episodes I plan on doing soon is going to be on the history of Alzheimer's and dementia, because I actually researched that recently, and it was actually super, super interesting. So I just wanted to kind of talk about that briefly as we start this episode. So, did you know that caring for a person with dementia doesn't have to be this hard? If you are struggling and you would like to join our next free workshop.

[11:23] The topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout. I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop on Saturday. If you'd like to register, sister, message me the word workshop on Instagram or check out the link in the show notes below.

[12:08] Here are three questions that I kind of thought about. So why is staging of dementia important? So as a family caregiver of a person living with dementia, why is it important to not necessarily know the name of the stage, but to know that there are different stages is because each stage Each stage has its unique features. Certain things are more common in one stage over another stage. So, when you know what those commonalities are, it is easier for you to come up with solutions and strategies, which means each stage then have unique opportunities. So, they have features, each stage has different features and each stage has different opportunities. The second question I came up with is, when you understand each stage, you're more prepared.

[13:16] To know how to help that person, and you're more prepared for what's next. So that's more a statement than a question. So when you understand each stage, you are more prepared how to help that person, and you're prepared for what's coming next.

Understanding Dementia Stages

[13:34] And now we're going to talk about the three different stages. So there are lots of different staging tools, and I'm not going to get in the weeds on all of those. But for today's purposes, I'm going to explain the stages of dementia into just the three primary stages. There's a precursor stage, which is called mild cognitive impairment.

[14:02] Which is what my dad was diagnosed with last year. And even though we've not had an opportunity to to have him retested because he canceled the appointment on me. He right now still just has that as the diagnosis. So that is technically not dementia. It is a pre-dementia stage. About 20% of people who have a diagnosis of mild cognitive impairment will convert over into a mild dementia every year. But not everybody who has mild cognitive impairment mild cognitive impairment will actually convert over into a full diagnosis of dementia. So the three stages, an overview of the three stages. There's the early stage, there's the middle stage, and then there's the late stage of dementia. So I want you to picture in your mind three buckets, three separate buckets. So each one of the stages of dementia is a different bucket.

[15:07] So in the first bucket, we're going to talk about early stages of dementia. I want you to think about a person who has early stages of dementia as a person who can still do things alone. loan. They are needing us to walk with them, but they can do things for themselves. They do not need me to get them dressed. They do not need me to help them make a meal. They typically are still very much able to do things by themselves. They just need some support. The support might be intermittent, the support might be daily, the support might change over time, but they are still able to do things.

[16:05] All by themselves. They can take an activity and be able to sequence it through from beginning to end with most of the steps intact and pretty good quality still. So this might be mom who is living alone but is starting to have trouble remembering things. She might be having a harder time with things like taking her medication or cleaning the house or really seeing some of the overt things that you're noticing related to cleanliness in the house, but the house is still fairly put together. Things are put away. When you come to see her, she still looks pretty good and kept together.

[16:55] She's changing her clothes. She might be wearing them again, but she's mostly able to keep up with the quality of the activity that she is doing. So the quality is still there. It is starting to go away, but the person will still look pretty well put together. And so that's a person who is in the early stage of dementia. They need us to walk with them. They do not need us to take things away from them. They need the support, but they are able to physically do the things that they need to do with fairly good quality. So the quality of the task is still pretty good.

[17:41] So the middle stage of dementia or that middle bucket looks a little bit different. Here in this stage, we do things with the person living with dementia. We start to have to supplement them for the quality of the activity that they are going, that they need to do. They, we walk with them and we provide them mostly at that time. They are needing the verbal prompting. They're needing the reminders.

[18:18] They may be needing help with choosing the right outfits for the right season or for the right occasion.

[18:27] But they can still mostly do things for themselves. but the quality of what they're doing is starting to go away. These are the people who may or may not, when they go to the bathroom, flush the toilet or wash their hands afterwards, or when they're washing their hands, they just turn on the faucet and chuck their hands under the water and just kind of do that, you know, rinsing thing and call it good because they do not know what all the actual steps of the activity might be anymore. They may walk into the bathroom and take their toothbrush and brush their teeth without putting toothpaste on. So what they're needing is for us to come alongside them and verbally tell them.

[19:18] Step-by-step what to do, but they physically can still do it. They just cannot do the thinking part of it. So they need a person who is able to help them do it. So we are supplementing them for quality, but we're not physically doing it for them yet. This is the stage where people truly are starting to struggle more with some of the self-care types of activities, where they're truly starting to struggle to know how to do things in the right order, but they can if you just give them the right cues.

[19:59] Most of the time, a person who is in this middle bucket, where the quality has started to go away, and where they are not able to do the step-by-step, they are not likely safe to be living alone anymore and need supervision most of the time, or they need round-the-clock care. And so that's kind of that middle stage of dementia. And then the third stage or the third bucket is what we call the late stages of dementia.

[20:34] And in this bucket, the person who we are helping is requiring us to physically help them do the activity, either because they are not able to sequence the activity through themselves or they're not understanding what we're asking them to do. They may have trouble with their language or they may have some physical physical inability to do certain types of things, but these are the people where we are physically starting to have to help and do all of the activities for them, not with them anymore, but actually for them. These are the people who we are having to help with hygiene after they've gone to the bathroom because they may swipe, but they may not actually wipe, and they may not actually get clean. So we have a lot more hands-on physical actions that we are taking to help that person. And these are the people that we are doing for.

[21:41] And a person who is in their late stage of dementia is 100% requiring round-the-clock care. They cannot be home alone. They need somebody to be with them, and they are not safe to be left even for

Common Challenges in Each Dementia Stage

[21:59] an hour to go run an errand. So those are the three different buckets, the early stage, the middle stage, and the late stage of dementia.

[22:09] So what are some common challenges at each one of these stages? So I thought we'd kind of talk about that just for a couple of minutes to maybe make it a little bit more tangible for you in your mind. But in the first bucket, in the mild stage, remember, this is where a person can still do everything for themselves.

[22:31] They just need us to be available. Available we are not doing things for them but we're kind of letting them do for themselves but we're there we they are still doing it with good quality or fair quality they can still sequence themselves all the way through an activity a routine and familiar activity so what does this look like in this stage people are starting to lose their autonomy but they may not see that they're struggling. They may not see that they're having difficulty with certain things in this stage. Oftentimes in this mild to middle stage is when a person living with dementia might be very argumentative with you because they do not notice the changes that they have. If you haven't listened to last episode, episode 127, I would recommend that you listen to that one because in that particular episode, we talked about anosognosia, which is the inability for a person to see that they have dementia. And that episode is called, Why is it important to tell people someone has dementia. That was just this earlier this week's episode, 127.

[23:55] So if you haven't listened to that one yet, go check it out because we talk about anosognosia there.

[24:03] But the kinds of challenges that people have at this particular point in this mild dementia bucket or things like the higher level skills, things like not being able to drive anymore or starting to struggle with bill paying or starting to really struggle with managing their own medication or forgetting to take their medications.

[24:28] They may be argumentative a little bit more or there are other challenges that they might be exhibiting, but a lot of the kinds of, challenges that people have, they're still able to be alone, but things are starting to change. I have a client right now who is helping his grandmother, who I believe is still kind of in her middle mild stages of dementia, because when we speak about what she looks like, she's still pretty well put together, but she is starting to have some changes. Almost any person can have any change at any specific time but a lot of a lot of times what we do notice here might be things like starting to be a little bit more anxious or a little bit more afraid of being alone or looking like they might be a little paranoid because things are not making sense to their brain a person might be.

[25:34] Having some delusional thinking. For example, somebody's coming in and stealing things because I don't remember where I put them, or my husband or my wife is having an affair. So some of those are some of the challenges that we might or typically see in those earlier stages of dementia. That is not to say that any of these cannot be seen at a different stage. I was just trying to to come up with a concrete way for you to be able to kind of start to get a picture of what a mild dementia stage looks like. So just recall that this person still has pretty good quality and can do things by themselves.

[26:19] They're not necessarily requiring round-the-clock care, but they're requiring intermittent and relatively consistent interaction with them to ensure that they are truly still safe to be by themselves. So in that middle bucket, in that middle stage of dementia, what type of things do we see in this particular stage? Oftentimes, the person does not have an awareness that they are changing. And oftentimes in this middle bucket, this bucket where we have to start to walk alongside and do a little bit more, we do with them. We do not take it away from them, but we are, we're starting to do with the person because they're not able to do it without the verbal prompting, without somebody helping them sequence through it. But in this stage, frequently, what we will see is a lot of the self-care stuff starting to fall apart, where the person might be having a harder time showering.

[27:32] Or being reluctant to shower, or they might be a little bit more anxious. Something I frequently see at this middle stage is this is where a person starts to maybe do some hoarding of items. And there is a difference between hoarding and clutter. We're not going to get into that today. But frequently, this is the person who will have piles of things laid out in their house because if I don't see it, I don't know where it is. So the house starts to change. There are bills laying around.

[28:11] There may be piles of things all throughout the house that look the same. I've been in people's houses where legitimately in every single room, there was a toothpaste and toothbrush because I believe that when she saw the toothbrush and toothpaste, that prompted her her to go brush her teeth so she didn't remember that it was in the bathroom and so it was all over the house there was legitimately toothbrush and toothpaste in every single room of the house those can be some early early signs of middle stage dementia some anxiety might start to be creeping in or a person might be a little bit more argumentative or angry they may be starting to have what's called distressing beliefs. Maybe they are starting to hallucinate or they're really truly starting to have delusions all the time or lots of these other types of challenges that we start to see in this middle stage. Not every person will have every different type of of what's called challenging behavior. And they're very specific to an individual, but they do follow patterns.

[29:30] So it's not like you're on your own. You just need to learn how to speak dementia and you need to learn a repeatable framework for you to run through so that you know how to help that person as well as help yourself. Now in the later stages of dementia, that third little bucket.

[29:50] This is where the person is needing round-the-clock care. We're starting to really need round-the-clock care in the middle stages too, but definitely in the late stages, a person is not safe to be home alone without round-the-clock care. And in that, in this later stage of dementia, this is where we are helping do with a person and for a person. And so some of the types of things that we see at this stage are things like a person wandering through the house, or they may be hallucinating. And an interesting fact is people who have Alzheimer's dementia typically will hallucinate children for some reason. And so they may have hallucinations, or they may continue to have some delusions, or they're starting to struggle to eat.

[30:49] Either they're not eating at all or they're not eating well and they're starting to lose some weight or they may have some aggression or they may have a lot of anxiety or sundowning or some of these other kinds of things that come along with a later stage dementia. Dementia they might be resistant to you helping change them or going to the bathroom or maybe they get super angry when you're trying to help them or they might be a person who starts to do types of things that you've never seen them do before that we call inappropriate like inappropriate inappropriate behavior of whatever way, for example, cussing or disrobing or other types of things that they normally would not have been doing. So I hope today's episode was a little bit helpful to you related to looking at how to stage dementia.

Anticipating Dementia Behaviors

[31:52] So immediately you can understand some of these behaviors because they do follow a very set type of a pattern as a person is progressing through their dementia journey. And knowing this and understanding these stages of dementia will actually help you prepare. Because this is something that's one of my pet peeves is that we, being healthcare, I I don't work as a therapist anymore, but in the healthcare environment, it is not often.

[32:30] Said specifically out loud that now that a person that you're helping has dementia, that ultimately, if they live long enough, they will require around the clock care. So we've got to start to prepare for that. We've got to start to plan for it. It allows us as family caregivers to do what I call affectionately the ostrich maneuver, where we stick our head in the sand and just hope that it'll go away. The reality of the matter is, if the person that you love has dementia for long enough, they will require 24-hour care. Not every person living with dementia gets to that stage of requiring 24-hour care because they might pass away before that happens because of another reason.

[33:24] But the fact of the matter is that we do need to prepare for that, even if it never happens. And when we are the family or the caregivers that don't want to have these open conversations with ourself early on, we set ourselves up for failure. I have used this analogy in other episodes about the frog in cold water and caregiving. When we start down a dementia journey, we're the frog in the cold water that the water's been turned up and is starting to warm up. And because it is so slow and insidious and we don't notice these changes, that by the time we wake up, we're the boiled frog. Whereas if we are thrown into a crisis situation, we know that it's unpleasant and we try to get ourselves out of it. So I want to encourage you today to understand that these different stages and understanding these different stages set you as a family caregiver up for success when you know and understand and can anticipate what's

Preparation for Dementia Care Challenges

[34:44] coming because then we can prepare for it. Dear sister and brother in Christ, we can prepare for it. So.

[34:52] I hope this episode was encouraging to you. It is meant to be encouraging. And if you haven't yet attended my monthly free workshop, I do it once a month. It is tomorrow, June the 8th at 10 a.m. Eastern. And the link is in the show notes for you to sign up for this next free workshop. So I do hope you join me because it's actually going to be about challenging, behaviors and what we can do to help mitigate the responses we get from the person that we are helping. So go ahead and sign up. It's a short two-hour workshop. If you sign up for the workshop, you will get the replay. But I invite you and encourage you to come. It's typically a a small workshop where there are not a lot of people, and I will answer your questions live. So I hope to see you there tomorrow. And yet again, thank you for joining me today, and I hope to see you soon, and may the Lord bless you.

[36:01] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve review. You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families. It's a positive and proactive space to navigate dementia caregiving together. Get practical tools and find support, but without the verbal vomit. It. Be a part of our community where we seek to find peace of mind and ease despite a dementia diagnosis. So join today and see you next time as our flight takes off.

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Importance of Communication in Caregiving

[2:26] What's up, Christian caregiver? It's Lizette, your dementia mentor, and you are listening to Dementia Caregiving for Families. It's the show where I teach Bible-believing Christians how to ease the burden of Alzheimer's and dementia care by speaking dementia and planning ahead head so that you can decrease your stress and get back your time despite a dementia diagnosis. Today, we are going to talk about something that is very close to my heart and is coming up more and more frequently as I work with people in my group, and that is why is it important to tell people that someone you love has dementia.

[3:21] And I have noticed this frequently over the last year when I am talking to people that somebody they know or they love or they're helping has some form of cognitive impairment. And frequently the follow-up statement is, but I don't really want other people to know. And although that is a noble goal, I wanted to talk about that a little bit today, because it actually sets us up for failure. So how does it set us up for failure? So I know that many, many people who are helping somebody living with dementia feel shame or embarrassed about the fact that the person that they are helping has either cognitive impairment or a dementia diagnosis.

[4:15] Some of the reasons for that is they don't want people to see the person that they love in a different or an unflattering light. They may not want others to know because they want to protect the person who is living with dementia. They want to protect their dignity. They want to protect the person's autonomy. autonomy they may also feel like if they don't say anything about the person's cognitive impairment other people might not notice and I know it was something that I struggled with in the sense of you want to try to honor the person that you are helping and not tell other people what's going on because you want to be respectful and honor them. And the problem with this is that ultimately, this results in isolation of the person who is taking care of somebody living with cognitive loss, as well as isolation of the person living with dementia. And it also increases the stress and the burden of the person who is trying to manage alone. By the time a person who has been navigating this journey for a year or two or three.

[5:43] Starts to actually then tell other people that they are helping somebody who has cognitive loss, you're very close to burning out. And what happens then is it actually becomes very difficult to walk back from that. Once we get to that stress and overwhelm phase, walking back from that is possible. It absolutely is possible, but it is significantly harder than if we put strategies and things in place sooner. Galatians 6 verse 2 talks about bearing one another's burdens and thereby fulfilling the law of Christ. And so what I'm asking us to consider as we are Christian caregivers of somebody living with cognitive impairment is to bear one another's burdens. So today we're going to talk about why is it important to tell other people that someone that you know or love has dementia. And we're going to look at it in four practical tips. The first thing we're going to talk about is that you need to tell people early and often.

Early and Frequent Communication Strategy

[7:08] Even though other people might not see the person's cognitive loss yet.

[7:16] You need to tell them what you are seeing because frequently what happens is specifically in in situations where there are families like.

[7:28] Sibling sets or, you know, it's brothers and sisters caring for parents or sibling sets caring for a brother or spouses caring for a spouse that they have children or there may be blended families.

[7:46] What happens is the people who are living with that person frequently see these changes significantly earlier than people who are intermittently around the person living with dementia. I'll use myself and my sister as an example. I was aware of my parents, specifically my father's cognitive changes, probably about two years ahead of my sister. And I mentioned it to her. We continued to talk about it. I would tell her what I would see.

[8:22] She lives out of state, so she wasn't as close to them. She would speak to them on the phone. In those conversations, things might not come up that she would actually notice. But the reality of the matter is, over time, if somebody truly is struggling with cognitive impairment, other people are going to notice. It does get to the point where it is almost impossible for family to not recognize that something's going on. So despite the fact that other people may not be noticing what you're noticing, you need to start early on and speak often to them about what it is you're seeing. But don't argue with them. If they don't see it, they're not going to see it at that moment. So you just have to be patient and understand that it's like the old story that you can lead a horse to water, but you cannot make him drink. The same thing related to cognitive loss. You can present your family with the facts that you see. You may have taken the person to the doctor. You may have an actual diagnosis.

[9:43] You might just notice a lot of things that they're not noticing, and you're telling them, but they may not notice. And if that happens, I recognize how frustrating and how hard that is as a family caregivers, specifically if you're the one providing the care. But arguing with somebody who is not ready to see it at that time isn't really a solution, nor will it actually make them see what it is that you are seeing. So.

[10:17] Just be patient if they don't see it. If the person you are caring for lives long enough, at some point, it will not be able to be hidden.

Looping in Closest Family and Church Leadership

[10:28] So we have time, but you need to start early and you need to speak often. The second strategy or practical tip for today is when you are telling people around you that somebody you know and love has dementia.

[10:48] You have to start with the people closest to that person, and then you work out concentrically outwards from that. So what does that look like? If it is a husband and a wife, you need to loop in the children, the adult children. You need to specify to them specifically what it is that you're seeing. If you are adult children dealing with parents who are starting to have cognitive impairment, you loop in your siblings, you bring in the people, you talk to everybody. It has become very easy nowadays for almost anybody to have a way to face time or set up a meeting, either using Google Meet or Zoom's free accounts, or there are multiple different ways, Facebook Messenger, schedule a time, have a face-to-face conversation.

[11:48] With your siblings, with the siblings of the people, whoever that inner circle is, let them know. And back to point number one, don't argue with them if they don't see it. Just present them with the facts as you know them to be. And then after you have talked to the people closest, the family members, specifically if you have a diagnosis, if you've gotten a diagnosis, the next place that you need to consider starting to speak early and speak often is with your church's leadership and the deacons, the elders, the deacons, the pastor. Those are the people who are mandated and who are there to help you through this journey from a spiritual perspective.

[12:41] There are strategies and things that can be implemented from a church leadership perspective to help you. But if the church leaders do not know, if the pastor doesn't know that you're struggling with somebody who is living with cognitive loss, then they cannot reach out and help you. And what ends up happening, unless you're in a very close-knit group and a small group, it's easy for you to isolate yourself and the pastors reach out and ask what's going on. But if they don't truly have a good picture of what you're contending with, they may not be offering you the help and the support that you need.

Involving Employer, Colleagues, and Neighbors

[13:23] So speak with your church leadership and deacons. Then you need to, if you're still working, you need to loop in your employer and your colleagues and your friends and your neighbors. You do need to talk to people about what's going on. If you are still working, like 60% of family caregivers of somebody living with dementia are still working 30 plus hours a week, you do need to speak with your employer and find out what strategies you can implement in protecting your job so that you are not counted absent or get yourself in trouble because you have to take time off from work to take somebody to the doctor, those kinds of things. There are strategies called Intermittent FMLA, Federal Medical Leave Act. An intermittent FMLA means that you have, you can take, by law, you have up to 12 weeks of medical leave at a job once you've qualified for that. You can take intermittent FMLA, which means you can take a couple of hours here, a couple of hours there, and don't jeopardize your work.

[14:41] If you are still working as a family caregiver. So then loop in your family, friends, colleagues, boss, start with human resources, really be proactive about telling people what you are helping somebody with. And very importantly, you do need to consider telling your neighbors.

[15:02] Not necessarily all the neighbors, but you need to be able to let your neighbors know what's going on specifically as things are changing over time from a safety perspective, because about 80% of people who have dementia will wander away from home at least once in their dementia caregiving journey. So having your neighbors, your closest neighbors, geographic neighbors, know and and understand what is happening, even though it hasn't happened, is a safety strategy so that you can protect the person in case they get confused and they wander away from home. And I didn't put this in my notes as I was preparing, but also you need to consider letting the authorities in your area know that you are helping somebody living with dementia so that if something happened, they are aware and not ignore it from a perspective of this is an adult because this is now an adult who has a specific problem that we need to protect them should something happen. So that's just an aside.

Dealing with Lack of Awareness in the Person

[16:28] The third practical tip for today is you need to recognize or know that the person who has dementia may not see it at all.

[16:43] And so you might need to have private and separate conversations without them there with the people that you need to inform. Form because about 80% of people who have cognitive impairment and dementia have what is known to be anosognosia, which literally means they do not have the ability to see that there's something wrong. In their mind, they have nothing wrong with them. They cannot recognize the fact that their brain is changing. And it's kind of like a person who has had an amputation and forgets that they've had an amputation and gets up and tries to walk and there's no longer a leg.

[17:43] So it very frequently happens that the person living with dementia or living with cognitive of loss does not see it or recognize it. So when you are talking to your family or when you're speaking to church leadership, you might have to have these conversations in private, separate conversations without them there. And it's not because we're trying to hide this information from them. But because when somebody really cannot see that something is wrong, they...

[18:21] Will try to argue with you and try to reason with you that there is nothing wrong and ultimately you cannot reason with a person who has cognitive loss. It is a futile thing to try to reason through when somebody's brain is not working the way it always has been working. So the medical term is anosognosia, and it is not the same thing as denial. They are two totally different things, but anosognosia is a real condition that happens with strokes, with head injuries, with dementia, that the person doesn't have the ability to see the problems that they are having.

Communicating with Healthcare Providers

[19:13] And the fourth practical tip that we're going to talk about today is speaking with healthcare providers. Now, that can be a significant challenge for us at times, and I recognize that. I'm a recovering healthcare provider. I'm an occupational therapist by background and training, even though I'm not practicing as an occupational therapist anymore. I did for over 30 years, so I'm very familiar with how to speak to health care providers. But one of the things that I want you as a family caregiver to know is that many, many doctors will tell you as the family member that what you are seeing is just normal aging.

[20:07] The reality of the matter is short-term memory loss is not the same as being forgetful every now and then. They're two totally different things. And truly not being able to remember something is not normal aging. Why do I say it's not normal aging? Because all of us have had hundreds of stories that we can tell over the decades of Aunt Susie who lived to be 99 years old, smoked like a chimney and drank like a fish and had nothing wrong with her. And her thinking processes never changed. We all know people who are older adults who never have changes in their thinking processes other than maybe slowing down a little bit, taking a little longer to learn new information, but not having memory deficits.

[21:11] So a lot of doctors, when you you will speak to them at the beginning, will tell you, oh, what you're seeing is just normal aging. And I strongly encourage you to remember that memory loss, true memory loss, is not normal. It is not normal aging. And so if you can have a conversation with the healthcare provider, either your parent's doctor or your spouse's doctor, without the person there, that would be wonderful. However, I know that that is not always a realistic expectation to be able to have those conversations without the person there.

[21:58] So if you're not able to do that, what I would love to encourage you to do is to write a note, not a book, but a very short, brief summary. And the more bullet points you can give, the better. Write it out. I've noticed my dad doing this, this, this, and this. And be specific. I've noticed my dad is forgetting to take his medication three times a week because I set it up he isn't but it's an example or I've noticed several times when we go over there to eat that he's forgotten to switch the stove off or we're starting to notice whatever it is They keep repeating the same questions.

[22:50] Whatever it is that you are noticing, give it to the nurse when you take the person in. And ask the nurse to give it to the doctor to review it before they come into the room. And then you have prepared the doctor at least to be open to seeing or maybe

Easing Dementia Care Challenges

[23:15] trying to figure things out a little bit further. Did you know that caring for a person with dementia doesn't have to be this hard? If you are struggling and you would like to join our next free workshop, The topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout. I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop on Saturday. If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[24:17] So if you go to the doctor with the person that you are helping and your gut is telling that something is wrong and you do not get a positive response from the doctor related to your concerns, related to the person that you're helping, then you need to strongly consider getting a different doctor.

[24:44] Because ultimately time is brain. We all know this. We get taught early on, everybody, most people are taught that if you have signs and symptoms of a stroke, you get your anatomy to the doctor, to the ER immediately. Do not pass go. Do not collect 200. You go to the ER because we recognize that your brain is dying. Well, the reality of the matter is that when you are starting to have changes related to dementia, it is your brain starting to change and time is brain. And so there are things that can be done to help you change your lifestyle, change your habits, work on cognitive activities.

[25:37] There are some medications that may be more effective in preventing dementia. So there's a lot that can be done, but the reality is that we are waiting too late and we're losing the window of opportunity to build resilience in people's minds to really do things that can affect a practical radical change, maybe not in the fact that the person has dementia, but perhaps in defraying or delaying the ultimate impact or the quality of life a person living with dementia and their family are experiencing. So if you.

[26:28] Or a family caregiver, and your gut is telling you that there is something wrong, and the doctor that you're taking the person to is not being responsive, I beg you to consider finding another doctor. And I recognize that that is a big ask. I know it is hard to get into doctors. I know it takes time to get appointments, but squeaky wheel does get the oil. So if you're not willing or it's not possible or there are other factors related to not switching doctors, then you really need to work on trying to convince the physician that something is wrong and get the person that you are helping some help. So to conclude today's podcast episode, I really want to touch on the following

Destigmatizing Dementia Discussion

[27:23] real briefly, because this is something that's becoming more and more a burden on my heart. And that is the stigma of dementia related to people living with dementia, because stigma is never, ever, ever going to go away unless we, the family caregivers, the people who are helping somebody living with dementia start talking about it.

[27:54] We do not stigmatize somebody who has a physical impairment like an amputation. We see that the person has lost their leg.

[28:06] They've lost their arm. We know somebody has a spinal cord injury. They're not able to walk anymore. And they are not being stigmatized because of these physical changes that they're happening, that they have had happen. The reality of the matter is dementia is a physical change to the brain. We just cannot see it. Our brain is broken. The wiring is not working as it always used to. But because a person's personality.

[28:45] Their intellect, their personhood, for lack of a better word, is very much thought to be housed in how we think, our memories, and how we communicate with with other people, all of that comes along with our thinking processes. And so one of my biggest desires is to really de-stigmatize dementia, but the stigma is not going to go away unless we start talking about it because you cannot see a broken brain. And then also something else I want you to be aware of, and this is oftentimes for the primary family caregiver, one of the most frustrating things is that sometimes you are the one that sees what's going on and other people do not see it because the person living with dementia is able for a short period of time sometimes to really hide it and mask it well when there are visitors or when they're talking on the phone with that other sibling or your sibling or another family member. So it sometimes...

[30:03] Not evident to other people, which makes it hard for you as the primary caregiver because you see what's going on. But back to point number one, arguing with people who are not ready to hear or see this yet is not something that is helpful to you. Just file it away, Let it be like a duck. Have it roll off of your back and know that if the person is truly having these changes, that over time it will not be able to be masked anymore. more. And just be patient, but keep talking about it. Keep telling people what's going on, not to be argumentative, not to try to embarrass the person that you're helping, but truly from an awareness perspective that something is going on. We as a society need to change how we think about dementia before it is going to get easier for the family caregivers of people living with dementia.

Recap: Start Early and Speak Often

[31:17] So a quick little recap of today's episode. We talked about four practical tips. Number one being start early and speak often. Number two, start with the people people closest to you so that you can start to really bring people along with you.

[31:37] Number three, know that the person you are helping may never see it, and that is called anosognosia. And number four, know how to speak to healthcare providers, and we talked about a couple of tips to help you through that.

[31:55] And lastly, I'm so proud of you for being here and listening to this podcast related to dementia because the more we talk about it, the less stigma there will be for you as well as the person that you are helping. So I would love to invite you, if you have not yet attended one of my free workshops, I do a monthly workshop every single month where I talk about challenging behaviors, and we give you five tips to manage challenging behaviors. The next one is this coming Saturday, June the 8th at 10 a.m., and I invite you to register for the next workshop. The link is in the show notes below, and I look forward to having you there.

[32:51] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you. You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families. It's a positive and proactive space to navigate dementia caregiving together. Get practical tools and find support but without the verbal vomit. Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis. So join today and see you next time as our flight takes off.

lizette as a family caregiver

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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