 Hello, and welcome to Beyond the Diagnosis, a podcast that features stories of people with lived experiences as a patient or caregiver. I'm your host, Monica, a neuroscience graduate and current medical student in Canada. Today's story centers around a highly impactful neurological disease. According to Alzheimer's Disease International, there is an estimated 55 million people worldwide living with dementia. And this number is set to rise. But its true impact extends beyond just the person with dementia, but also to their family members and their caregivers. So with effects this profound, I believe it's our priority to discuss some of the unseen challenges and also provide some resources to support dementia care partners. So I had the very memorable opportunity to hear from a dementia care partner herself, Ms. Webster. Not only does she bring lived expertise, she's also a certified dementia care consultant and the founder and ambassador of the Dementia Education Program at McGill University. Welcome, Ms. Webster. Thank you for having me. Thank you so much for joining me. I just remember back in med one, med two, when I first heard of your story, it was so impactful. It stuck to me even though some years have passed now. So I'm very grateful that you're here to share your story and to share some insights about being a dementia care partner. So I thought for those who might not be familiar yet, could you please speak to what is dementia and how does that differ from Alzheimer's disease? Dementia is really an umbrella term similar to cancer being an umbrella term. It's really a complex condition that affects cognitive functions, including memory, communication, decision making, as well as our activities of daily living. And there are different types of diseases that cause dementia. The most common ones are called Alzheimer's disease, vascular dementia, Lewy body dementia, frontal temporal dementia, among others. So with so many intricacies that could be involved, I wonder whether you could also speak to some of the experiences that you have been through as a dementia care partner. Well, a lot of people think that dementia equals memory loss. And while in fact it does impact the memory, it has, there are very, there's a whole bunch of different symptoms that present. So for example, so persistent memory loss. So memory loss that will impact daily life, constantly forgetting people's names, constantly forgetting what time it is, appointments, that type of thing. Challenges with problem solving. So like specifically with regards to following instructions, following recipes, pain bills, lots of confusion with time and place. So thinking that it's nighttime when it's still only the afternoon or waking up at two o'clock in the morning thinking it's time to start the day, forgetting the days of the week. It really impacts a person's language and communication. So as the disease progresses, people start to forget words, commonly used words. In my case, for example, my mother was Finnish and she would start mixing up Finnish and English in the same sentence. And as it progresses more and more, they really have to hard time putting together sentences. Lack of judgment. Today we're exposed with all kinds of fraudulent emails and phone calls and even healthy people sometimes have a hard time differentiating. But it's really the loss of judgment, loss of judgment with regards to even sometimes getting dressed. So if it's in the summertime, people may be dressing like it's in wintertime. And then when I mentioned earlier, it could also cause a significant change in a person's personality and moods. Somebody that may have been very mild mannered becomes extremely aggressive. It has an impact on how people could react verbally using words that they would have never used before, becoming physically aggressive at times. And then just difficulty completing like everyday tasks. What we call our activities of daily living. So being able to get dressed, being able to just prepare a regular meal. As I mentioned earlier, doing your banking, grooming. And then finally, it also, because of all of these different factors, it often causes people to become more socially isolated. They become overwhelmed. Like everything makes them feel overwhelmed. Conversations make them feel overwhelmed. So they become socially isolated. What's challenging with the symptoms is that there are too many public awareness campaigns out there right now. If we look on a global scale about dementia. And so it could often be confused as somebody being depressed. It could often be confused as somebody being taking drugs, being drunk under the influence of different things. But because there are so many little symptoms that present people really don't know, you know, what's going on with the person. Because you mentioned things like personality changes, things like memory loss. How does this present kind of temporally in terms of progression? So really the beginning, it really affects a person's cognitive skills. So exactly at the beginning, it'll be everything to do with, you'll see changes in their personality, changes in their mood, slight changes in their memory. So from outward appearances, they look fine. And that's what's hard for family members or for colleagues or friends. I remember with my mom, one of her friends would say to me, your mother, she looks fine. There's nothing wrong with her because outwardly, she still looked very, very good. However, the way the disease progresses is that over time, it really starts to impact the activities of daily living. So at the beginning again, it's very cognitive. They may be repeating themselves over and over again, but they're still able to get up and get dressed. Some of them can, people still can still drive, cook, et cetera. But as time goes on, all of those tasks start to become affected. So then you start, people start noticing slowly that, hmm, they're not taking their shower every day. They're not maybe putting on the makeup. They're wearing the same clothes all the time. They're not preparing their meals. They're having difficulty managing their bills. They're forgetting to pay bills. Their handwriting might start to change. And as, as the disease progresses more and more, you really start seeing the toll it takes on a person physically. So dementia itself is a terminal illness. You know, there are people who may have preexisting health conditions. So you could have a person that has dementia, but also has cancer, heart disease, diabetes for which they may, you know, pass away from one of those illnesses prior to dementia. But if a person doesn't have any preexisting health conditions, dementia itself is a terminal illness. So as, as the disease evolves, it really has an impact on, on the person physically. And essentially by the end, the body starts just really starts to begin to shut down where they have more and more difficulty swallowing. It impacts their mobility. And so at the end, everything just begins to shut down. It feels very, it feels very sad to hear. And I wonder if you could also speak to your experience about like the whole emotional aspect of it throughout the progression. The impact, the impact on the, on the care partner is really one of what we call anticipatory loss, right? So, you know, when you receive this type of diagnosis, it's like any other, you know, difficult diagnosis where you know, unfortunately life becomes interrupted, right? It's a shock. And so for the care partner, you're constantly in a state of grieving because at the beginning, with all the changes that are taking place with your family members communication, I see, especially with regards to couples, for example, where, you know, you're sitting down having a meal, you're able to have these conversations and communicate, that starts to disappear. So you're starting to, to mourn the loss of these communication skills and the conversations. But then as time goes on, what's so hard is you're witnessing these physical changes. And when I say physical changes, the person is really becoming more and more frail, right? You start noticing how they're not, you know, you have to be careful how they walk. You want to reduce the risk of falls. You want to reduce the risk of injury and you're witnessing the decline. And, you know, when you, when you were in my class, at McGill, you know, I even show visuals of how my mother, her eyes, right? In terms of how she's, how she's looking at you. Like it's almost as if she's, she's disappearing, right? In front of your eyes. You know, there are other cases, depending on the type of dementia where a person could become very verbally and physically aggressive. And that becomes very hard because here, once upon a time, you had this loving relationship with a person and then they become so verbally aggressive towards you. So there are all kinds of emotions that, that are brought upon the care partners as a result of this illness. But sadness, I have to say, is probably one of the most overriding emotions that we feel. It's, it's the sadness to constantly witness this loss over, you know, a period of, could be many years. The anticipatory emotions that you mentioned, I wonder whether this ties into the idea of early diagnosis and how perhaps that could help. Because I remember back in our lectures, you mentioned that it's quite difficult to get the person you're taking care of to access the healthcare service in the first place when you first notice some signs of dementia. So how do you initially advocate for a loved one who you suspect might have dementia with these challenges in mind? Okay, so that question will have multiple answers. So the first, the first part is it is important to try to get a diagnosis as early as possible. Okay, that's, that's important. Because now there are some new drugs that are coming out on the market, not available yet in Canada, but soon to be, that could, could slow down the progression. There is no cure, but there are drugs that could potentially slow down the progression. So there is some hope. But, but in order for these drugs to work, they, you have to be diagnosed in the early stages. The challenge is, as I mentioned earlier, there is no public awareness campaign. And the majority of people do not recognize the signs and symptoms. So most of the time by the time you brought your family member to see a doctor, the disease has already advanced quite a bit. But by, by having a diagnosis, it provides the family with a bit of a sense of relief in terms of saying, okay, there is, there is in fact something wrong. Okay. Because prior to the diagnosis, you're really wondering like what's going on, why are they behaving this way? So by naming it, okay, it does provide some, a sense of maybe, I mean, relief is a difficult word to say, but at least here's the, here's the situation. And now how do we move forward, right? Also a diagnosis is extremely important, because as the disease progresses, it may bring on some responsive behaviors where medications would be needed. So for example, if the person starts to become depressed or starts to become aggressive, anxious, there are medications that could manage all of that. And again, as a disease evolves and the person is no longer able to manage their finances or drive, they, the family really needs to have a doctor sign off on a letter stating that the person is becoming incapacitated. You need that for financial legal issues. The other challenge, however, is, is the fact that the disease brings forth another illness called anosognosia. And anosognosia means that the person that is suffering these symptoms has a total loss of insight. They are not aware at all that anything is wrong. So the family members, friends, neighbors are seeing the changes, but the person themself doesn't recognize that there's anything wrong. And that makes it hard, because like in my case, I wanted to take my mom to see the doctor when she didn't believe she needed to see a doctor because she didn't think anything was wrong. So that's always a very difficult step. You know, I always suggest to families to use what I call a compassionate lie where you tell your loved one, we are both going for an annual physical checkup to see the doctor. We are both going to, for a flu shot, but we have to see the doctor first for a checkup, right? So you've got to try to use a little bit of tricks. But with this illness, the pathway to getting a diagnosis isn't always so clear because in some cases there are family doctors who have the necessary training to be able to do a proper assessment in their office. So the families will leave with an assessment. Then there are the family doctors who are unfortunately may have not received the education and training that they needed to do the assessment. So what happens then is that the family has to be referred to either a geriatrician or a neurologist. And so it's the journey of getting that diagnosis could be complex. It's not just seeing one person and then knowing what's up. And there are a few tests that also have to be performed in order to get that proper assessment. And finally, I have to say that the doctor, probably the information that is most important to the doctor is what the family members are going to share, the signs and symptoms that were witnessed, that the family members witnessed. So in addition to doing some perhaps scans and blood tests, the doctor really needs the family members to arrive. And I would suggest send this list before the appointment. Because it's very hard to talk about a person in front of the person when they have anus and nausea. But really what the family members can share is really, really key to doing an assessment. I see. So kind of just to summarize, it's from what I understand, quite variable depending on the experience of the practitioner themselves. For example, a GP who is equipped to make the necessary investigations for dementia versus someone who is not, which would lead to a referral. And then from there, you would still need to help the loved one get the care that they need. Yeah. And to do a proper assessment, I mean, it takes about a good hour, hour and a half. And if you think about family doctors, I mean, you know, the reality is they're supposed to see, you know, six patients every hour. So that's 10 minutes per patient. So it's very hard for a family doctor to be able to conduct a true proper assessment like cognitive testing and all everything that they need, you know, in a 10 minute time. But that's the healthcare system. That's where it's going. They want the family doctors to be able to do more assessments. But considering how many patients in the amount of time, I don't know how that that's possible to get a true proper assessment. So it really sounds like it's complex to make the diagnosis. And so a follow-up question that I have regarding one point that you mentioned. I know Psygnothia, the lack of awareness. How does then receiving the diagnosis impact the patient and also the care partner, given that they might not even be aware that they could have dementia? Yeah. That could become very challenging. And I was just at a conversation with Alzheimer's Society of Canada about this before talking to you. But, you know, first of all, before making any type of diagnosis, the doctor has to be sure that there is no potential for what we call a catastrophic reaction on the patient's behalf. So you don't want to make sure that the patient is able to receive this type of diagnosis. And that doesn't happen after just one. It should not happen after one appointment. Myself, I had one appointment and my neurologist announced to my mother that she had Alzheimer's disease and she became furious. And she wasn't able to accept it. I have to be honest. So that's why it's very important that when you are going, when there is a doctor's appointment, that the person be accompanied by a family member. You should, the person who is being assessed should not be on their own because, yes, there are some people that are aware that there are changes happening and that they are aware of, you know, of what's happening. There's a big stigma around the word Alzheimer's disease or dementia. But it's very advisable that you always have to be accompanied with a family member because it could come as a shock. As could the disclosure of any other, you know, difficult disease like cardiovascular illness or cancer, right? So people react differently and it really depends on their level of awareness and what is going on with them. I'm wondering as well, how often do you, and if you interact with other healthcare professionals, for example, like a social worker to support the kind of after effects of receiving the diagnosis or someone like a psychologist, geriatrician, you name it. In the perfect world, it takes a multidisciplinary team to surround the patient, right? And so what happens, for example, in Quebec is if a person is diagnosed with any form of, any form of dementia, depending where they are, like at what stage they're at, families are often recommended to be in touch with a CLSC social worker. So the social worker is really the one that would come and that would assess the living situation at home and, you know, maybe recommend some home care support if needed. And then again, in Quebec, if they need to transition to long-term care to the public system, it needs to be done by a social worker. You know, in some cases, the family doctor is able to manage the case as a whole. Otherwise it will be, the case will be sent to a geriatrician, right? And oftentimes a person will see a geriatrician if they have other pre-existing health conditions. You may have an older adult who has, you know, heart issues and diabetes and high blood pressure. So if they can most be managed by a geriatrician to specialize in dementia, that's ideal, right? If it's required that the person have, they want to do some more investigation and have more scans and have more precise details on what type of dementia then they would probably be seen by a neurologist. And then, you know, because the disease affects a person's, again, activities of daily living along the way, ideally you would have an occupational and physical therapist that's involved that comes and does a home assessment and ensures that the person is safe at home. You know, you may have a nutritionist that could be involved. Definitely a psychologist, but I, like in my case, I had a psychologist for myself blending me support. But it's, you know, it, as we see, it's harder and harder in our current health care system to access all of these resources. The majority of people also don't have the finances. It's a very expensive disease to manage financially because the more the disease evolves, the more care that you need. So oftentimes if you want to have access to different resources, because of the waiting list and the public system, people may have to go privately and that's something that's not always attainable for many people. Due to the barriers to accessing care, I could imagine that as the owners on the caregiver, the care partner as well is quite high. And this could perhaps look like creating like a safe environment for the person living with dementia, offering emotional support. So I'm just wondering if you could speak to some of the strategies that you use to, or that you offered for other people to create a safe and supportive environment for people living at home. Exactly. For me, what's most important whenever I hear that a person is still living at home, especially if they're in the early to mid stages, it's kind of like I said, that grey zone where you always say, are they safe? And there are certain areas of a home that cause more danger than other. So for example, the bathroom, you should always have the bath mats outside of the shower. You really want to avoid any types of falls. You may want to have a handle bar in the shower. Be aware of not keeping medications lying around because as the disease progresses, the person really needs to be administered their medication because if they take it on their own, they could forget to take their medications or they double up. So medications like that are in medicine cabinets or lying around on kitchen tables or bedside tables should be removed, right? And I really look at everything that's going on in the room. So if a person starts to narrow and it really affects the mobility, the person starts to develop a bit of a shuffle, you have to imagine that if a person wakes up in the middle of the night, is there any risk of them falling? So are the hallways well lit? Is there a nightlight in the bathroom? Are there any cords that they could potentially fall over or lifted carpets, loose carpets or something like that? So I would recommend how to go up and down stairs. Whenever I do home assessments, I look, are the stairs, are the runners on the stairs? How steep are the stairs? Because what happens is as time progresses, if a person wants to remain at home for as long as possible and their mobility is affected, I often recommend that they move their bedroom onto the main floor because if they want to have a good shuffle, she had to have hip replacement surgery and unfortunately it did not go well and she was also not able to be rehabilitated because she didn't understand the instructions on the exercises to do and so she ended up being once upon a time a very physically fit woman but then had to use a walker, then she forgot how to use the walker, she started falling and then I had to use the walker, sometimes a spouse will say, I have just gone out for a couple of hours and I have left them, they are okay alone but are you sure they are okay alone? Are you sure they don't go into the kitchen and forget and turn on the stove and forget the stove is turned on? A microwave could also be dangerous where they are putting something into the microwave for too long or that they shouldn't go into the microwave. If not properly supervised. With many considerations I feel like there's so many subtle things, like the bath mats or the microwaves, I couldn't imagine that as the disease progresses there could be a point where it's no longer safe to be at home especially if the caregiver has other responsibilities, how would you approach the conversation about assisted living if that's something that comes up? I think what caregivers have a hard time realizing is really assessing our own abilities. Nobody wants to move to a residence or we try to encourage people to try to have home care support at the beginning but at some point it becomes not only no longer safe for the person living with dementia but it becomes no longer safe for the care partner and with this type of illness a lot of the care partners are over the age of 75, some are in their state themselves may have some physical limitations and because the disease progresses where the care partner has to help them go to the washroom, get into the shower, do the transfers they start to become incontinent they have trouble eating, they get up multiple times in the evening perhaps wandering, for a care partner if you're on the verge of complete burnout and exhaustion or anger it's a lot of them to become extremely angry you just can't I see these families all the time especially it's very hard for spouses you know you've had this for better or for worse marriage then you have to wake up and realize I just can't take care of my husband or my wife anymore and it's a devastating decision to have to make but at the same time it's an important one because you think that you're doing your best to care for your loved one at home at a point where you may not be able to the disease could present as I mentioned earlier where the person could become very verbally or physically abusive towards their spouse it could become very very dangerous where they just can't be home and so care partners end up filling tremendous amount of guilt but they shouldn't because you know as the disease progresses it becomes harder on the care partner than it is on the person because the person is losing their insight more and more we start as care partners witnessing all those physical changes that take place and so the number one priority as a care partner has to be the person's safety their cleanliness you know and their happiness for what happiness is worth and you know there are times where people think oh my husband my father's never going to residence but by moving them to a residence I have a recent case where my husband was just moved to residence he's actually doing better because he's getting a lot of social stimulation while he was at home he was just in the living room just in front of the television which he couldn't even really understand anymore but by being in a good residence he's socially stimulated because he's surrounded by activity all day long I can imagine that with all these challenges it's hard for the caregiver themselves to look after themselves so I'm just wondering as you speak about that how do you as a caregiver take care of yourself well the majority of people that I meet were like myself you know I suffered a very very severe burnout and it wasn't just from being a care partner because the truth is anybody who's caring for somebody who's not well you also have a life right I represented the sandwich generation where I had three young kids and I had a job and I had society's expectations and I believed I made the mistake of believing that I was super woman or super human where I can just go and go and go and unfortunately a lot of care partners don't believe that they have permission to have a life I find that often times with spouses where they say well because my husband can't do this any more than I can't and they feel like the guilt is so overwhelming for them that they just have permission to have any time so sadly it often takes a burnout or a close to burnout for a care partner to realize okay it's time for me and what I say is look even if you can just find like one hour a day to go for a walk just a walk I'm not telling you to go to a gym not telling you to just just a walk breathe get some fresh air I always say like set boundaries so I had to do whatever for my burnout I really had to do a triage of my life and look at what was working and what was not working and who were the people in my life that were adding positive vibes and those that weren't and I had to really dig deep and get rid of like some toxic friends or sometimes it could be family members that are not positive and so you can't really get rid of family members but you can make the decision to say I'm not having dinner with these people but I'm going to do lunch because lunch is short it's an hour an hour and 15 minutes it normally doesn't involve alcohol hopefully doesn't and then that's it or the friend that would get mad and say well why aren't you calling me what you really have to give yourself permission to say to really preserve your energy and not give your energy away to people or to commitments as a society I find we have a really hard time saying no so people will ask us could you do this could you do that the answer is no and we don't have to apologize I would also suggest that if you're starting to feel overwhelmed it's important to seek professional help like if you can get professional help from a social worker a psychiatrist a psychologist a group therapy but don't wait until you're burning out to seek help and I think probably the two most important things is that oftentimes you know anger, stress, burnout comes when you feel that you don't have control so education is key it's really important to become as educated as possible about the disease whatever disease that you're dealing with but become as educated as possible be one step ahead of it at all times and also become educated as soon as possible about all the community resources that could help you and the person that has the illness and don't wait a lot of times we say oh I'm not there yet wait until you're there and then you're crying for help right you've got to do your research and become educated as early as possible you speak to the importance of acting early to be educated to be proactive and to have boundaries in order to care for yourself and I wonder just to conclude whether you have any resources you'd like to share for people who are also dementia care partners well I would love to share the McGill University Dementia Education Program which I proudly founded in 2017 as a result of my own journey of being a care partner and not being educated or supported by the healthcare system and you know I had no prior affiliation to McGill but I knew that we had one of the best medical schools in the world in our city and you know approached them and said you know how would you like to create this community program with me and the Dean said yes and so we've really developed a comprehensive range of resources they're all free you go to McGill.ca I'm sure you'll share the link with the listeners and we have various resources so one of the most important ones that I would recommend is our dementia companion guide it's available in 10 different languages and you can download it for free if people want printed copies it's about $20 on Amazon and it supports our program but it's available in 10 different languages and many more to come because dementia doesn't discriminate and it's important for us to really educate a really multicultural population about this disease and then we have a webcast series called McGill Cares where I've produced about 100 webcasts with all kinds of leading healthcare professionals on various topics not only related to dementia but other things like ALS, Parkinson's even cancer I have experts, I have caregivers, I have survivors so that's a really great webcast series and we're also I would also recommend that people go and read the 2021 and 2022 World Alzheimer reports produced by Alzheimer's disease international which is on our website the first one is on a journey through a diagnosis of dementia and the other one is all about post-diagnostic management and again really it's experts from all around the world that have contributed to these reports and we have some support groups in partnership with Alzheimer's Society in Montreal, we've got virtual support groups we have a young Cares support group we also have a wonderful program called Caring Conversations with two pioneer social workers where every month there's a different topic they present and the caregivers could just register and interact with the social workers which is great and we're currently developing activity modules leisure and recreational modules to teach care partners all kinds of activities that they could do at home to stimulate a person living with dementia and hopefully in 2024 we'll also be launching our online education program so they're all there for you and people to access for free thank you so much for all that you do it's really amazing to share that your dementia companion guide has been translated to so many different languages, I love how you're making everything very accessible, thank you very much Ms. Webster for your time and for sharing your expertise well thank you for having me Monica, glad to be here I'd also like to thank you the listener for tuning into one of the first episodes of the beyond the diagnosis podcast if you have a story you'd like to share or some feedback you'd like to give then please reach out to me directly at highmonicamaranda at gmail.com see you in the next episode