Understanding the Progression and Stages of Dementia

Welcome everyone to the Ontario Caregiver Organization's webinar series. These webinars bring together caregivers and subject matter experts to explore topics of interest to caregivers. We do this to support and engage chosen family, friends, neighbours, really anyone who's taking care of someone else. My name is Katie Muirhead and I'm going to be your moderator for today. And before we begin, I'd like to take a moment to acknowledge the lands that we're on today. While we meet on a virtual platform, I'd like to take a moment to acknowledge the importance of the land which we each call home. I'm joining you from the City of St. Catharines in the Niagara region, which is the traditional territory of the Haudenosaunee and Anishinaabe peoples. This territory is covered by the Upper Canada Treaties and is within the land protected by the Dish With One Spoon Agreement. Today this gathering place is home to many First Nations, Métis and Inuit peoples and acknowledging this reminds us that our great standard of living is directly related to the resources and friendships of Indigenous peoples. If you'd like to learn more about the lands that you're joining from, you can find out more at native-land.ca. Our webinar today is called Understanding the Progression and Stages of Dementia. Receiving a diagnosis of any form of dementia can be distressing for both the individual diagnosed and their caregivers. The Alzheimer's Society of Ontario is returning to OCO to discuss the progression and stages of the disease. And today we're going to talk more about the meaning of progression, the effects of these changes on both the person with the diagnosis and their caregivers, and give you some tips for managing the evolving dynamics of the relationship between the caregivers and the person living with the diagnosis. Joining us today to speak more about this is Robyn Smart from the Alzheimer's Society of Waterloo-Wellington. Robyn has been the Public Education Coordinator with the Alzheimer's Society for almost 20 years. Her past experience in long-term care in various roles rounds out her expertise supporting older adults and persons with a range of diagnoses and disabilities. So I'm so happy to welcome back Robyn, and I'm going to get you to turn on your video and your audio, and I'll turn it over to you. Well, thank you. Thank you very much, Katie, and thank you to everybody who came today. Sincere appreciation from us to you that you have made time to be here. We are going to be talking about the progression understanding and the progression of the stages of dementia, and what we're trying to do today is unravel the complicated topic of how dementia progresses. So in this session, we're going to explore what progression means in the context of dementia, the impact that those changes have on all involved, and consider how to support the changing relationship. And we're going to use the metaphor of going through the woods as we look at the progression of dementia. The images of a forest that you're going to see indicate a journey, since living with dementia is like being on a journey, and usually one does not have a clear path or wayfinding signs in the forest. Now, if possible, I'm going to invite you to have a pen or a pencil and a paper to hand, because we're going to ask you to do a little bit of writing later on. So if you have a pencil and paper handy, we'll reflect later and ask you to jot a note. Also, we're going to be sharing resources with you. Katie alluded to this in her introduction earlier. We have QR codes, we have links, and the resources will be sent to you. But if you have a cell phone handy, you can of course scan, you can just pick up and scan the QR code if you don't want to wait for those resources to come to you later. So there are many terms that can describe your role if you are here as somebody caring for or about somebody who has dementia. You might call yourself a caregiver, or a carer, or a care provider, or a care partner. There are many terms. You may be a spouse, you may be an adult child, you may be a brother, sister, a parent, a neighbor, a friend, a cousin, even a co-worker. You may be involved in the physical, the financial, and or the emotional support for someone. You may live with that person, or you may live in the same town, or perhaps you live in a different province, or a different country. Whatever your role, wherever you live, whatever your relationship, you all have something in common today. Someone that you know or are interested in is living with dementia. So whatever you call yourself, you're here because you care. And I want to thank you again for making that effort to come today. Now as we talk, just for consistency's sake, we're going to use the term care partner. And I really want to remind you, it says it on the slide, and I know you all can read, and you've probably read it already, but I'm going to repeat it because it bears repeating. When you have met one care partner, you have met one care partner. That is true for people living with dementia, and that is true for people caring for people with dementia. So the journey of dementia will be different for each person involved. The person living with dementia, their care partners, their family, their friends, they're all on the journey, and yet they're experiencing it in their own way. This journey of dementia, it's not one of clear direction or clear timelines. There will be moments of steep climbing. They're difficult and possibly unstable footing at times as you go. There will be moments of peace and maybe chances to catch our breath. For some parts of the journey, you are alone. And for others, there are times of camaraderie, and you might meet others along the way. But dementia means that as you go on this journey, the person who has the diagnosis has a brain that is changing and failing, and they are experiencing a variety of different symptoms. Now, the symptoms may include memory loss, language problems, maybe personality changes. Basically, the brain with dementia is just not able to function as well as it once did. And there are many different diseases that cause the symptoms of dementia. All of these diseases, even though they're different, they are progressive, and they move the person forward on the journey, and there is a need for that person to take others with them. So let's take a moment. This is where if you had that pen or paper, or maybe you make notes on your phone, however you do it. If you have a pen or paper, you have your phone. We want you to take a moment and write about how you're feeling about your journey. So just pick a word or a tiny phrase and describe how you're feeling about your journey so far. I'm going to refer to it later in the presentation. I'll just give you a second or two. Just invite you to write down for yourself. I'm not asking you to share it, but write down for yourself a word or maybe a tiny phrase that describes how you're feeling about your journey so far. Okay. So let's talk about the journey of dementia. Sometimes as care partners, we connect and we share about the experiences we're having on this journey with other care partners. And if we compare our situation with others, it can be possible to wonder why some changes are or are not happening on our journey. Within families, there may be tensions as each care partner from the family has their own perspective on how to support the person best who has the diagnosis. And friends may or may not join you on this journey. They may leave you to manage the journey on your own. So why is the journey so individual for each person? Well, there are many, many influences on the journey. And I'm going to list some of them for you here. First, we need to consider the type of dementia. For example, a person with Alzheimer's type dementia will have different needs than that of a person with frontotemporal dementia. The age of onset, a 61-year-old will likely be physically more robust than a 91-year-old. Other illnesses, maybe they require medication management or they cause increased frailty or maybe they have an impact on how the dementia progresses. Support networks. The journey of dementia will mean the person will need others to support them. And some folks have more people to call upon. They have others, many more others in their network. Consider living arrangements. If on their own, the symptoms may not be noticed. They may possibly leave the person living with more risk. Maybe their self-care is compromised. There are financial realities. That can impact the options that a person has for support. For example, if they can't drive anymore, can they afford to use taxis and go about and out in the community? And of course, we cannot forget culture and social history. That also impinges on chances for connection, for familiarity with the situation and how to get help. And all these factors, they just mix together and they influence the person's journey. So, let's look, at least initially, let's start by looking at how we formally measure the journey. So, there are different measuring tools that the people, that various people use when describing how far along an individual may be on the journey of dementia. In 1982, the global deterioration scale became a standard language in health care. And it measures seven different stages on the journey using numbers for each stage. So, usually clinicians and medical personnel use the number system. There is a woman that you may or may not have heard of. Her name is Tipa Snow. And Tipa is an occupational therapist. She's a dementia care specialist. And she really wanted to promote a more positive focus on the journey. And so, she has staged the journey using precious gems as her way of explaining the changes and the places people are at. Diamonds and rubies and sapphires, etc. Now, the Alzheimer's Society of Canada uses the phrases early, middle or late. Sometimes mild, moderate or severe may be used as well. Regardless, regardless of whatever system is used, what's important to understand is that the journey of dementia will progress. As this is a presentation from the Alzheimer's Society, we're going to use the language of early, middle and late. And you need to know that these are not discrete and separate stages. They blend together. It is a continuum from early through middle into late. So, let's use that language, early, middle, late. And I'm going to try to map out for you how it might look. So, on this chart right now, you can see that time is measured along the bottom. And there's no indication of how long this time is. This is just showing the concept of time moving forward. It's not a measurement itself. There's a little arrow there, right? It's just time moving forward. And along the left, you can see the stages, the early, middle, late. And it's important to understand that each stage is just a window of measurement. This window is not a specific numerical value. Each stage, as I said, will blend into the next. It's just the progression of dementia. Now, at each stage, there is a mixture of four measurements, cognitive, physical, functional, and social. As a person progresses, each stage will be a unique blend for that person, meaning that two people in the early stage may present entirely different from each other. One may be still physically well and yet cognitively changing. Another person may not look like they have much cognitive change yet, but socially, they're really struggling. The consistency amongst them is that all journeys of dementia do experience cognitive change. The uniqueness of the journey is how the cognitive change affects the other three, the physical, the functional, and the social. So, there is always cognitive change and how each individual's very individual cognitive change plays out will affect the other sections. So, what we're going to do is we're going to look at three different individuals on their journey. And I want to show how differently their mixture for these different components influences their journey. You can see within the window of each stage that each person is at a different level within that stage. So, really, you take away that everybody is different. Everybody has a unique journey. Everybody has an individual journey, even if they have exactly the same diagnosis. So, let's dive a little deeper into the four parts, the four skill sets of the stages, just to have a better understanding of what they mean. So, cognitive skill sets, that's about thinking abilities. Your brain, you know, thinks for you. There is no other organ in your body that thinks for you, only your brain. And so, the skills measured in this section are the ability to create and access memories, the ability to focus, and the ability to orient oneself in time and location. They also measure language and communication here under the cognitive part. Now, next we're going to look at physical. So, the physical skill set measures the ability of the brain to tell the different body parts to move. That's known as motor planning. So, physically, it measures how the body moves. Is it coordinated? Are your actions fluid? Can the person do what's needed? And balance is measured here as well. The autonomic system, which are things that the brain helps control, like your heart rate, your blood pressure, your respiration, your digestion, and sexual arousal, they're found here under the physical category as well. Now, when we talk about the functional skill set, we're talking about activities of daily living and instrumental activities of daily living. And those are often shortened to be ADLs and IADLs. So, an IADL, an instrumental activity of daily living, is usually affected first by the cognitive changes of dementia. And these are the skills that are needed to do tasks that involve instruments. Tasks like driving, cooking, managing finances, medications, using the phone, maintaining a home, using transportation. The ADLs, or the activities of daily living, they include the things needed to take care of your body. Eating, dressing, hygiene, continence, toileting, things like that. And then, last but not least, you come to the social measurements. And they look at changes in a person's life pattern, their hobbies, their interests, their social connections, and their overall mood. So, we know that dementia is unique for each person and we know how they measure the journey. We're talking early, middle, late here. For the next part of the presentation, what I'm going to do is I'm going to share a few stories with you of how each of these elements, the cognitive, physical, functional, and social, how they may look in each stage of dementia. And as we go through these stories, you feel free, if you have that pen and paper, to make note of which stories might feel familiar to you or seem similar to your experience. So, let's start here. We're going to look at cognitive changes in the early stage with Mary. Mary returned home from the hairdressers to a phone call that she'd left her wallet at the salon. She told them she'd pick it up later and continued watching TV. That evening, when out for dinner with friends, Mary panicked when she couldn't find her wallet. So, let's move to Mary in the middle stage. Mary repeatedly shares the same stories of years ago with family. She likes going to the same restaurant where she asks for the same thing each time. And Mary's daughter now takes care of the finances. Moving to late stage. As Mary's journey progresses, she has fewer words. She likes the day program where she successfully participates in activities designed for her situation. When at home, Mary enjoys rummaging in the kitchen, moving items from one spot to another. Okay, let's look at somebody else. Let's look here at Manloon's story. So, we're in the early stage and Manloon still goes on her daily walks, albeit a little slower than in the past. She stays off the trails with roots and rocks sticking to the clear path so she doesn't have another fall like happened to her in the summer. In the middle stage, Manloon is unsteady when walking, so someone is with her if she goes for a walk. Her husband has removed all the scatter mats in the home to help reduce the risk of tripping. And Manloon sleeps quite a bit during the day and she may be awake a few times overnight. Now Manloon has physically progressed to the late stage. She shuffles when she walks and her daughter helps provide full care for her. PSWs, that's personal support workers, come into Manloon's home three times a week to help with bathing. Manloon is on the wait list for a room in long-term care. I'm just going to just very briefly take you through this again. I just want to remind you the IADLs are the skills needed to do the tasks that involve things and the ADLs, those are the skills needed to take care of oneself. Okay, so let's meet Bob. Here's a story about Bob and functional changes. Now in the early stage, Bob still has the ability and the license to drive. His wife gets frustrated because she feels he drives too slowly now. His wife is discouraged by how well Bob can look with friends and yet he needs help with tasks around the house. In the middle stage, functionally, Bob's story has changed. He's quite independent for ADLs, whereas his IADLs, they need support. Bob and his wife can still go to the monthly theater group matinee. Before they leave, Bob makes peanut butter sandwiches for lunch. His wife arranges for their tickets, does the driving, calls their friends ahead of time and sorts out the meeting. Time passes and Bob functionally has progressed to late stage. He can no longer perform his IADLs and needs support with his ADLs. So now he lives in long-term care. His care needs, such as feeding and hygiene, they're met by the staff. What that does mean is that Bob's grandson can spend time outside with him when the weather's nice instead of focusing on helping his grandmother with physical care. So the social changes experience, we're going to introduce you to somebody else now. This is Kapil. And Kapil is noticing, maybe, social changes. And I think what we want to pay attention to as I bring this story to you is how subtle and how undervalued by others the social changes can be. So Kapil hasn't done any wood carving at home for quite a while now, something he enjoyed all his life. When he does go to the senior center, he enjoys being with the wood carvers group and listening to their jokes. Other than attending less often and a little bit more quiet, no one has noticed any changes. Note, he doesn't carve, but he enjoys hanging out. But the other folks haven't really picked up on that. In the middle stage, Kapil's wife now takes care of all the details for organizing family gatherings. To help Kapil cope with the noise, she invites fewer people over at the same time and for a shorter amount of time than in the past. She makes sure there's a quiet room where Kapil can go if things get too overwhelming. Now, in the late stage, Kapil spends his days at home, mostly in front of the television. He does not initiate conversation, so his wife arranges for respite care into the home. The home care workers are able to get him moving and doing a few little activities, different activities. So you've met a few folks now. You've listened to some stories. You may, if you like, type into the chat. Maybe this is a good time for you to do some sharing. Feel free to type into the chat your thoughts about them. I want you to consider a couple of things, and you're under no obligation to share your thoughts. You can just go on making private notes for yourself, if you like. But did any of those stories feel familiar to you? You know, many caregivers experience similar situations. So, you know, did any of those stories resonate with you? You can just type that into the chat. And the other question I have for you is, did any of the stories help you become more aware of the changes that maybe had or hadn't been considered before? Sometimes change is so slow, it's hard to recognize it's happening. And sometimes we just focus on the cognitive changes. So if you want to share, you can type that in. While you're sharing, I want you to think about a great resource that we have. And again, we've got the QR code on the screen for you. We've got the link at the bottom. You'll get these slides. And I know that it will also go up in the chat box for you. But this resource from the Alzheimer's Society of Canada is a brilliant resource. This is what you probably want to really set aside some time to look at. This is called a landing page. It's a landing page, and it links you to full explanations and printable resources for each stage of dementia. It's got an overview, early stage, middle stage, late stage, and even end of life. And the great thing about these resources is that they're written, so they're easy to read, and they're extremely practical. They look at what the changes are, what the person might want to do about them, what the care partners might want to do about them. So I would encourage you to look at this page when you get some time. The other thing that I want to do is I want to, because we've been looking at the journey of dementia from the perspective of the person living with the brain changes, I want to help you look at it from the care partners experience. So the next few moments, what I'm going to do is share with you some quotes from people who attend the same support group. So here's a quote. She mentioned going out with her husband. I can't take my wife anywhere in public for fear of what she might say or do. Now that was a quote from a man taking care of his wife, and she had early stage FTD, frontotemporal dementia. Her husband can still bathe himself. Mine gets lost trying to figure out what to do in there. Now both these women are supporting their husbands. They're both in the middle stage, but you can see that they're having different experiences. Others are upset with repeated questions. I wish I could have any kind of conversation at home. It's so quiet. And that's a quote from a daughter who's taking care of her mother with late stage dementia. And it really, I think, shows very clearly how different each experience is in each stage of the journey. So with the nature of dementia, its journey of progressive changes, it means that relationships change. Those relationships with everybody in somebody's life end up changing. And so your relationship is on a journey just as much as the person who has a diagnosis is on a journey. Now in the early stage, when change might be quite subtle or infrequent, care partners may be left uncertain if what they feel is happening is truly happening. You may notice small arguments or friction points, and those might increase in frequency as the two of you problem solve for some of the changes that are happening. Now as time moves on, you as a care partner, you're now aware that you do have to help the person living with dementia more and more, and in more different ways. Things that they are no longer able to do may fall on your shoulders, leaving you to figure out a new skill set that you might not have had in the past. And while you're trying to support someone who is different than they were before, in the late stage, care partners will ideally shift their focus slowly back to themselves as care is now hopefully shared with others, be it family, volunteers, paid staff. The changing relationship dynamic, it's a balance. It's a balance of grief and acceptance. Being a person who supports someone living with dementia means grieving emotionally while in the midst of taking on a new role. This can be the hardest part of being a care partner, this emotional shift that needs you to emotionally progress with the dementia versus trying to keep things as they once were. And I just want to acknowledge that ain't easy. That is so hard, so difficult. So I want you to think about sort of the 24-hour relationships, some common experiences and feelings that care partners may have at different stages of the journey with friends, neighbors, community acquaintances. So quite often in the early stage, care partners might find themselves offering small explanations to others in the moment when something happens. The anxiety of preparing for possible embarrassment during this stage, it might be subtle, but it's often there. In the middle stage, care partners' social and family life will be affected. This is where social isolation can take hold if care partners are unable to connect with others and they are increasingly bearing the full responsibility for caring for the person living with dementia. In the late stage, care partners' lives may be completely orbiting around the person living with dementia because they need 24-hour care. And this could be for years. Now, by this stage, in the late stage, if you've been giving 24-hour care for years on years, sometimes friendships and social contacts have been left behind just because of that increased demand for care. If the person living with dementia has moved into a long-term care home, the care partner may be left struggling to navigate a new relationship dynamic now that the care is provided by the staff. And all of these changes and shifts in relationship, they are par. Care partners have a lot to take care of and quite often focus so much of their energy into the care of the person living with dementia that their own health or emotional needs may seem a lesser priority. The nature of dementia may mean feelings could include being unappreciated, being overworked, being overwhelmed, or even just sometimes feeling a deeper connection with the person whom they're supporting. Now, earlier, I asked you to write down how you're feeling about your journey so far. And if you're comfortable at this point, maybe you want to put that in the chat. You might want to share that in the chat. Now, as things go into the chat, and they're popping up on your screen and you're reading them as they go into the chat, when you see all those notes coming up on the chat screen, do your feelings make sense? Do you see that there's a commonality maybe between your feelings and the other care people's feelings? Okay. So, understanding that the relationship is changing and it's going to continue to change means that care partners need some tools for support. And these tools may not be intuitive for everyone. And they're not meant to be another task. Oh, something else I have to do. No, no. Quite the opposite, in fact. When these tools are used in moderation or consistently, it's been demonstrated that stress is reduced for care partners and the focus on the relationship is valued. So, a shift in focus from exclusively taking care of the physical and medical needs of the person towards focusing on the relationship, that is significant. Dr. Tiffany Chow, she was the behavioral neurologist and senior scientist at Baycrest Hospital in Toronto, in 2013, wrote a book. And in this book she wrote, and I'm going to read you a quote here, each family member or close friend has a different timetable for making the transition from fighting the disease to accepting that life has changed and will continue to change in ways that cannot be anticipated. I view that shift from railing against a mystery disease to managing an irreversible dementia as a dance of negotiation. She's really recognizing the dance towards focusing on the relationship. So, one tool that can help with that shift is learning about how to connect and lessen the number of corrections that we may find ourselves doing throughout the day. How we communicate with the person whose brain is changing is key. Adapting how we speak and what words we use, those are powerful tools for care partners. So powerful, in fact, that communication can be seen as a medication for dementia support. Another tool for support is one of reflection and acknowledgement. Brief in dementia care may be quite the experience. And sometimes it's a very quiet experience, very individual, very private. You know, as I mentioned earlier, the journey of dementia is unique and it's going to move ahead on its own time schedule, which means grief can slowly and quietly weaken our emotional strength. You may have heard the term ambiguous loss. That means the person is both here and not here at the same time. Knowing and recognizing that grief is with you on this journey can be a step towards not only better supporting the person living with dementia, but also helping to make you the care partner stronger. And the Alzheimer's Society has resources and supports available. And I'm going to share that with you and specifically the one on ambiguous loss in just a moment. So, for care partners, one way to continue to connect with people who live with dementia is through activities. These moments of doing a thing, whatever it is, a thing together, that's where relationship can be the focus. Activities include everything from adapting day-to-day tasks to more structured moments. Care partners taking time to consciously do something pleasant together with the person living with dementia will help the relationship. And complementing activities, it's okay for care partners to give opportunities of peace and rest and relaxation for the person living with dementia. For people with changing brains, there may be a lot of internal stress experienced as they're constantly trying to understand what is happening, what they should do next, how they should do that. Having a care partner say, it's okay, let's just pause for a moment. That may be what the person needs. And for all of us, we find comfort in connecting with others about common fond memories. The same holds true for people living with dementia. Trying to explain that this is the third or seventh or 20th time that a story has been told to you, that's usually not particularly helpful. Trying to move the dynamic towards just appreciating that someone is trying to share with you might be more helpful. It's getting away from what's right and what's wrong. You don't want to leave hurt feelings for anybody. It's finding a way for care partners to repeatedly listen to those stories and allow the relationship to focus on the interconnectedness, the conversation, the sharing. You want to focus on the relationship, not the reality of how many times the same story has come up. So tools for support are ones that are going to help, and yet they're not a recipe. Sometimes they're not accessible. Maybe you're tired or other people are involved with this journey and they have their own agenda. And when things aren't working, maybe the three R's are something you can try. So the first R is recognize. Recognize the emotion the person is having. State what you see or repeat their statement back to them. You're upset about not being able to go out, just as an example. You don't ever have to promise somebody a promise that you can't keep, but you want to show them that their perspective is important and they need to be heard before they can move on to another thought. So first you recognize their emotion. Secondly, you reassure. You say whatever's right in the moment. You'll help them. You'll stay with them. You'll look into them. You'll figure it out with them. Again, this collaboration. You don't, again, have to promise things you can't keep. You want to show them that you're with them and that it can be dealt with and it's not insurmountable. And then you might want to move on to redirect. Sometimes the person living with dementia gets stuck. They get stuck on a loop and redirection allows you to change the focus. You can gently redirect their attention. Let's grab a bite before we leave or we do something or you can change the topic. If you're going to try these three R's, and I recommend strongly that you do sometime, you've got to do them in this order. If we jump to redirection, it's usually not very successful. I mean, you can imagine it. If somebody tried to distract you while you were super upset about something, you just come back to the same topic that you were upset about. So, recognize the emotion, reassure them, and then try to redirect. So, I'm going to bring us back to Dr. Tiffany Chow for just a minute, and I'm going to have a look at tools for support. This is our final look at tools. Whichever tool you may consider trying or keep on doing, the purpose of these tools is to always focus on the relationship. This journey of dementia, it can be a little easier if the relationship between you and the person you're supporting is about moments of togetherness, ones you can look back on with fondness. I remember an adult daughter sharing that even though her father in late-stage Alzheimer's would often not finish his dinner at the table, that then spending time with him rummaging through nuts and bolts in the garage while snacking on bananas and cookies, it's a memory that she always cherishes. She focused on the relationship with her father, spending time with him peacefully versus trying to redirect him to eat at the table. And so, as care partners, we really need to help the person living with dementia to feel safe. They need to understand that you are a safe person in their life, that you are someone they can turn to, and that will reduce anxiety and promote peace of mind for everybody involved, that they can feel comfortable. That may be by maintaining familiar routines and spaces, because helping people feel comfortable reduces confusion, supports a sense of well-being. You may need to have a sense of control. As adults, we've learned to make decisions in our lives, and wherever possible, this should continue. And they need to have minimal stress. As care partners, we may be trying to do it all. Let go of perfection. It's going to wear you out. Some tasks can wait. Be with the person and take time for yourself. And allow the person living with dementia to experience pleasure. Both care partners and individuals with dementia need opportunities for enjoyment and connection. So, I referenced some very practical tools for you. This is the booklet on ambiguous loss and grief in dementia. And it's common. It's frequently unrecognized as part of the care partner's journey. And this is a resource designed for easy, easy further reading for you. I'm also going to bring to your attention this booklet. This is called A Handbook for Care. It's approximately 40 pages. I hope that doesn't overwhelm you. It's written to be very user-friendly. And it offers care tips and strategies. It's mostly focused on the middle stage of the journey. Now, you can print it directly from the Alzheimer's Society website. Or you can contact your local Alzheimer's Society. And they might have copies available for you to pick out or to mail out to you. So, I want to talk a little bit about relationship dynamics. Because we're getting near the end of the presentation. And so, what I want to do is I want to, on behalf of those who can't or don't, I want to thank you. Dementia is a hard disease to have. It's full of fear and confusion and frustration and anger and depression and anxiety. And there are continual losses as part of the journey. But dementia is also a hard disease to get along with sometimes. You get limited things. There might be resistance to help. Changing abilities are part of your journey as well. So, what you do every day as a care partner, it's vitally important. And I sincerely thank you. Because I, not only as a professional, but as a personal care partner, I know that what you do makes a difference. You can be the key to a journey of dementia that remembers that it's all about relationships. Thank you. So, what did we go over today? We used the progression of dementia. We sort of used the metaphor of being in a forest. We looked at how it changed for all people involved. We looked at how to support the changing relationship. If you are not already in connection with your local Alzheimer's Society, I really encourage you to reach out. Every Alzheimer's Society is here to help. Services are offered at no charge. You do not need specialty referrals. All you need to do is to reach out. We have first link services. We can provide support by telephone, virtually, in person through support groups. We offer education sessions like this one. We offer a wide variety of topics to meet your needs wherever you are, whatever stage, whatever part of the journey. We can give you information so you can learn more about dementia and caregiving and coping strategies. We can connect you to services in the community. And I really want to give a shout out to the Ontario Caregiver Organization. They too are a wealth of knowledge and support. If you need dementia specific information, please reach out to the Alzheimer's Society for any type of dementia. And if you need help on the caregiving journey, the OCO is here to help you. So what I'm going to do is I'm going to stop the share now, and I'm going to return this back to our moderator of the day. Thanks, Katie. Thank you, Robin. That was wonderful. We've had so many positive comments coming through the chat box, which I'm sure you've not been able to look at because you've been so busy sharing this great information. We do have a few minutes for questions. And there was a couple things that came through that I thought might help. It might help our group come back to some of this. And one of the questions that I'm going to sort of combine because it came through for a few folks is the first stage or maybe even backing up before the first stage. What do we do if we are wondering about dementia or we're not sure maybe for ourselves or for the people in our life? Do you have some quick tips in terms of that first step if somebody, you know, raises an eyebrow or reflects a little bit on I'm getting lots today or is this part of my aging? Is this something that I need to get looked at? And I know the Alzheimer's Society has a huge amount of resources and supports for that. So I'm wondering if you can speak to that really quickly. That's a great question. Thank you to whoever put that into the chat. Folks, that's a scary time to be in. And it's a difficult time to be in because dementias progress very slowly. They start insidiously. Usually, if there's a little red flag or a little concern, it can be explained the way they were tired, they were sick, there was a reason. I would suggest you do the following. Every time something makes your stomach flip with worry, make a note. Jot down what it was, when it happened, some circumstances. Start making notes. The other thing I would do is I would immediately be in touch with your local Alzheimer's Society or just go on the web and look on the Alzheimer's Society page for the possible warning signs. There are 10 possible warning signs. This is not diagnostic. This is just maybe to give you an idea of whether you should be concerned or not. The measuring stick for those 10 warning signs is does it interfere with your ability to function on a daily basis? Because we might all recognize ourselves in those warning signs. So, is it starting to interfere with your ability to function? The other thing I would strongly recommend is that you go online, look up our pages about getting ready to go for a doctor's appointment, but go and get it checked. Because maybe somebody is forgetful or having confusion for what they call an acute situation, a medical underlying problem that can be fixed, can be solved. Maybe there is something going on that we are not aware of that is causing the confusion. And if it's fixable, you want it fixed ASAP. That is the shortest version I can give you. No, that's great. I know that there's a lot more that you can provide. And again, I encourage folks, if this is something you're worrying about for yourself or someone else, that to connect with your local Alzheimer's Society. There is such a wealth of information and resources and really helps guide you through, step by step, the things to think about as a caregiver or as a person who might be concerned about this for yourself. So, that's our first plug whenever we encounter folks in the community who are asking about dementia or related concerns, is to go to your local Alzheimer's Society and get connected with the resources and some staff there. So, thank you. That's really, really helpful. I think sometimes people think, oh, I need to immediately get an assessment. I need to book with my family doctor and talk to a gerontologist and do all these really advanced sort of steps. But it sounds like there's some preliminary pieces that folks can consider as well. And I really do like that tip around documenting, you know, keeping track of some things. We did have another, oh, so there was a follow-up question that came in related to that around cognitive decline versus other items that's a benchmark for Alzheimer's or dementia. So, is there sort of a difference? Is there a benchmark or some key indicators that you can touch on that folks can think about? Obviously, as we age, there is some changes in memory, changes in sensory experiences. We tend to be a little bit slower. I really think the measuring stick is whether people are able to continue to function independently. That would be the measuring stick that I would use. When you are concerned about somebody, is it because of, is there a physical reason they can't do something anymore? Is it due to, I don't know, they have vision issues. They're not hearing anymore. It's not that they're not clear in their cognition. It's that they never heard you in the first place. So, how could they remember what you said? So, always, I recommend a physical check. Have they had their hearing assessments? Have they had their vision assessment? Have they been to their annual physical with the doctor? What's their nutrition looking like? What's their sleep hygiene looking like? Are there other reasons that could be underlying causing the confusion? And if not, then I would pursue looking at a medical workup and seeing just what the situation is because you always want to know what you're dealing with. And the sooner you know, the better in case there are steps that you want to take. We had some other questions come in, and certainly it's something that I've encountered out in the community, and I'm sure you have as well, Robin, around the challenges of caring for people when maybe your relationship with that person isn't great to begin with. And you touched on this a little bit in terms of those relationship dynamics. And I think sometimes it can look and feel a little bit different when you're supporting somebody with cognitive change like dementia, where you might see responsive behaviors or things that they do that you don't understand or they say things to you. And I don't know if you have any additional tips or strategies for folks who might be feeling really frustrated or maybe burnt out because they're providing care to someone that maybe they don't have the best relationship with. Yeah, that's a, I mean, it's a brutal situation to be in, to be a care provider to start with for somebody with dementia because it's a constantly shifting, constantly changing situation. And I really want to recognize the people who have not had maybe the best relationship and are still stepping up and doing what they can and what they need to do. These are circumstances where I would strongly recommend that you get in touch with the Alzheimer's Society, that you have one-to-one counseling, information counseling and sessions with the social workers, with their support team. Because I think each person, we mentioned earlier how individual everybody's journey is. And I think the individuality is emphasized in these particular circumstances where the background might be different and might be impinging on how things are playing out. And I think this is where you really need a one-to-one discussion for your particular situation. I cannot take a paintbrush and make a suggestion that would cover all the backgrounds and situations. Yeah, it is really unique to the individual and their relationship dynamics. And it's important that people know that the Alzheimer's Society has programs and services for the person with dementia, but so many program services and resources for the care partners or caregivers as well. So I'm glad that you mentioned the social work piece because it is there for you as a resource that is dementia specific. And the Alzheimer's Society has a great understanding of the challenges that caregivers face every day. So I can't say it enough, connect with your local Alzheimer's Society to get some of that support. We have two minutes left, but I want to fit in one other question because I hear this often in the community. And I feel like you're going to have a great response to this. So what about family history? So there's a lot of questions around, well, my mom had it, my dad had it. Genetics. Is this, you know, does that mean I'm more likely to get this? Let me put your minds at rest, folks. Take a deep breath because this is good news answer. When we're looking at Alzheimer's disease, it is exceptionally rare to inherit Alzheimer's disease. There is a form of inheritable bad familial autosomal dominant, but it is something that is less than 5% of all the cases worldwide, and it strikes early. It comes sometimes in your 30s and 40s, very early onset. And it's a 50-50 chance if your parent had the gene, but it's so rare. Most cases are sporadic and they tend to happen after the age of 65. They can happen before, but they tend to happen after 65. Age actually trumps family history. The biggest risk for developing dementia is age. Age is the, well, after age 65, every five years, your risk of developing dementia doubles. So age is definitely your biggest risk factor. If you want to reduce the risk of developing dementia, it is never, ever too early or too late to start taking on some brain health concepts. Really what we put in our bodies, what we eat, what we drink, how much sleep we get, how much exercise we get, how much cognitive challenge we get, these are things that make a difference to how our brain can withstand the challenges of aging. And so we really want to take brain health on because they say that if you delay the onset of dementia by five years, you'll cut the number of cases in half. 50% would never happen. So don't be worried about your folks having it. Be concerned about what am I doing to help keep my brain healthy? Put your energy there. And again, the Alzheimer's Society has tons of resources and that is the focus for Alzheimer's Awareness Month this year. Brain health, brain health, brain health. Wonderful. Thank you so much for that. I get it all the time and I wanted to put it out to our audience today that there's a lot of different considerations when we're talking about diagnoses of dementia or dementia related conditions. So thank you for clarifying and that's taken us just over the one o'clock hour. So I want to thank you, Robin, for joining us again today to share more about the stages and progression of dementia. Your careful and thorough review of this topic was so meaningful and supportive to those watching this talk. So thank you so much for joining us again today. Thank you.