Tag: dementia by day

Ambiguous Loss & Anticipatory Grief in 3 Minutes

So, ambiguous loss & anticipatory grief… it doesn’t mean that your loved one has to be at end of life stages. I would recommend reading about this actually pretty early on in a dementia journey because there’s a lot of great info. So she talks about a couple of different things. And one is about the concept of ambiguous loss. Ambiguous loss is a term coined by Dr. Pauline Boss. And it means the difficulty is that the person is physically present but psychologically gone, and the relationship that you’ve always known is altered. So this can apply to a lot of different situations. If you have someone, for example, who has an addiction, there is a degree of ambiguous loss there, right? That person has changed and maybe they feel gone to you. They maybe have not passed away, but the relationship is altered because they are altered. We also see this with anticipatory grief. You can see this in many situations that aren’t dementia. Anticipatory grief is the process of experiencing bereavement in advance of a loss, usually death. It may last for years in families, living with dementia as a function in cognitive decline in caregiving needs to increase during anticipatory grief, especially for care partners. For people living with dementia, they’re constantly anticipating more loss, right? It’s ambiguous because the person is still there, but the relationship has changed and they’re anticipating constant more grief because every time, you know, the person declines a little bit, they stabilize and then there’s another decline. Months, weeks, years later, burnout is very, very real for care partners. You know, when you’re exhausted, but you don’t want to let the person living with dementia down, you may feel angry and frustrated. You may feel hopeless. Feeling these things means it’s time for you to get help for yourself and for them. And help comes in the form of many different ways. One of these would be getting actual physical care for your loved one living with dementia, getting somebody in the house, transitioning them to a care community, trying respite care, or trying adult daycare to give yourself some space from being the 24/7 caregiver. It also means doing stuff like this, like what you’re doing now, finding resources to learn and to communicate with other caregivers who are very much in your boat or very adjacent boats.

August 29, 2022

Why Stuffed Animals work in Dementia Care

Video Transcript So here is what I hear from people who talk about using a stuffed animal with someone living with dementia – these are all the things that I hear from caregivers or from care communities – as to why they are afraid to try a stuffed animal with someone and they don’t want to do it. Creative Engagement, all about programming activities for people living with dementia is the book that I wish I had when I was a program director, and I literally have a list of them. So I’m going to tell you them right now. One, it isn’t dignified. Yes, it is. And the reason it’s dignified is that for a lot of people living with dementia, this looks and feels real and therefore is real to them. So when they think it’s real, of course, it’s dignified. We’re not trying to treat people living with dementia like they’re children. We’re giving them something to love and care for. And that’s what is so important. We’ve already tried it. Let me tell you a story about this. I was consulting with a company a couple of years ago, and they said, “Rachael, we’ve already tried stuffed animals and they don’t work.” I was like, Okay( not really believing them) let me see what you have. I went to their station where they’re keeping the baby dolls and stuffed animals. And they had a bear, a stuffed animal bear with a bow tie on it. And they were like, see, the residents don’t like it. And I said, who do you know, who has a bear in their house? A live bear in their house with a bow on it? And they were like, well, nobody. And I said, yeah, exactly. So a stuffed animal, that’s a bear like that – no one is going to think that’s real. The point of this is that they think it’s real. Or even if they don’t, it provides a level of comfort. And a lot of times people will vacillate between thinking it’s real one day and maybe the next day they don’t. But the point is that to a lot of people, this is very real to them. Okay. We can’t keep the dolls or pets clean enough. This is a huge problem, especially during COVID. The great thing about some of the memorable pets in particular is that they can be washed. You do have to look and make sure. But I have, in some cases, put them in a garment bag and put them actually in the washing machine. Again, you have to check. But even for the robotic ones, there’s no reason that you can’t, you know, take a washcloth and like wipe it down. This is also why I recommend having multiple pets because some residents or some clients will kind of hoard the animals. And so if that’s what’s happening, okay then maybe everybody has their own. And they’re not at a high price point, either. So it’s not a huge deal to have a number of them. The mechanical ones are about a hundred bucks, $120, though so that’s a little bit higher of a price point. But for the joy that people get, I don’t think it’s that expensive. And with these guys, I think this is about $40. This is why we’re going to have multiple pets. And of course, what if they don’t like it? Well, this brings me to my most important point, which is, that if you don’t try, you’re not going to know. And whatever they say is the right answer. Right? So we’re not going to force our reality on the person. We’re gonna let them tell us what their reality is, which is, of course embracing their reality. We’re goign to say, what do you think about this? If they say, oh, it’s a puppy. Yes. It’s a puppy. Oh, it’s the stuffed animal. Yes. And then that way you’re not pushing your reality on them. They’re telling you their reality. You can’t go wrong and guess what? If they don’t like it at all, fine. Try it again in a couple of months or don’t, but you’re never going to know unless you try. So those are the things that I hear most often!

August 15, 2022

Why Britney Spears never had Dementia

Hey, Rachael Wonderland here with another dementia car video. And I don’t normally do anything about pop culture. I just kind of stay away from it because I mostly just talk about dementia and it usually doesn’t come up in pop culture, too much, but this is worth addressing. And before we even dive in, for those of you who are new to my channel, why is this lady telling you about Britney Spears and why she doesn’t have dementia? Real quick background on me. I am a published author. I have two books about dementia from John Hopkins University Press. I’m a dementia care consultant. I have a masters in gerontology. I work primarily with senior living companies who want to build better dementia care programs. So now…I have heard a number of times now from different people about whether or not Britney Spears has dementia. No, Ugh. I hate this thing where, you know, you see a celebrity, you see somebody act a certain way or do something. And people who have no business talking about dementia, because they know nothing about dementia, decide that a person has dementia. First of all, if you ever hear someone say that like, oh, this person has dementia. Your question to that individual should be, what is the definition of dementia? I guarantee they don’t know. So I took the liberty of listening to the entire recorded leaked tapes that Britney Spears went through. She went through this whole court hearing thing, right. Had to talk to a judge. And it’s clear there’s abuse going on there, but that’s not what I’m here to talk about. I’m here to talk about dementia. Okay so taking this definition from Dr. Ray’s newer book and Dr. Ravens is a collaborator with Johns Hopkins university press, who’s also my publisher. So, what is dementia? I’m going to tell you right now it is an umbrella term that refers to any disease that has these four characteristics. One, it begins in adulthood. Two causes a decline in two or more aspects of thinking such as memory, organization of information, language, math perception, and judgment. Three, causes a decline in the ability to carry out at least one activity of everyday life related to self care work or independence. And four does not impair level of alertness or ability to pay attention. There are over 100 different causes of dementia. There are over 100 different diseases that make up this umbrella term. The most common of which is Alzheimer’s disease. So when you hear someone say Alzheimer’s and dementia, that’s a clue. They don’t know what they’re talking about because dementia’s the umbrella term. Alzheimer’s is the most common cause. Now what I want to really pay attention to here is this number four does not impair level of alertness or ability to pay attention. What we’ve learned as of late is that Britney was put on a number of different medications. The one that she mentioned in those tapes was lithium. I am not a physician and I’m not going to pretend to be, but lithium is a pretty serious medication that is used predominantly to treat people with bipolar type one. And if you don’t have that or anything worth treating with lithium, lithium is too intense and it will, like Brittany said, make you feel sick. It’ll make you feel drunk. It will impair your level of alertness. So that’s the big one. I, like many people born in the late eighties, have been a fan of Britney, at least in some capacity forever. You know, I would not call myself a super fan. I’ve never seen her perform. Not really my type of music, but you can’t deny she is a hitmaker and yes, I’ve been following her Instagram, which has been odd at times. But think about it this way. This is a woman who has been followed, photographed unauthorized biographies, the whole nine yards, her entire life. Think about how that would feel. If that was you, think about the first time anybody ever said anything mean to you online, how did it feel? Did it feel like you were getting attacked, right? That part of your body you want to go into like this fight or flight mode, right? Think about that times a hundred every day, day in, day out all the time and not to mention once this conservatorship started, it really sounds like Britney had no control over anything in her life, which is awful. And again, I’m not going to get into the whole abuse part of this, but really just to talk about dementia, this woman’s level of impairment isn’t there, right? The level, what you were seeing from her, any bizarre behavior really brought on probably by being stalked by the paparazzi forever. But with this conservatorship she’s being put on medication, she’s being watched like a Hawk, she’s being controlled. That’s not dementia. And I really would like people to stop trying to diagnose dementia who don’t even know what the definition of dementia is. Labeling people with dementia is not appropriate unless they’ve actually been evaluated for dementia. And it sounds like Britney’s gotten a lot of evaluations done and she’s never been diagnosed with dementia because of course, according to these four things, she doesn’t have it. So, please, stop saying people have dementia.

July 18, 2022

Don’t Send Me Your App Ideas!

Video Transcript Probably about every few months, at least, I get a message on LinkedIn or somehow via email with somebody asking me to give them advice about their app – their technology – that they’re building to disrupt dementia. This drives me crazy. I am so tired of talking to people about their apps. A lot of times, it comes from a good place, but unfortunately, building an app on your phone or another device to disrupt dementia, isn’t going to work. Here’s why… Generally speaking, the types of apps I hear people run by me are reminder apps. So it’s like an app to help people living with dementia remember something like to take their medicine. Well, here’s the challenge – if they can’t remember where their smartphone is or how to use it, or charge the iPad, or what have you – they’re not even going to know that that app exists. Oftentimes they do not remember to even look at it to find that information. So these apps that people often create, miss the real problem, which is that dementia is not just a memory problem. It’s not an isolated thing where someone’s memory is impaired and that’s kind of it, as we know, from talking to people living with dementia. Maybe living with a person, living with dementia, or caregiving dementia is just an umbrella term for a whole host of symptoms. And one of those is memory. So there are a lot of other pieces of dementia, especially depending on the cause of someone’s dementia, the type of someone’s dementia that makes it really challenging to develop an application that’s going to solve a thing. The other problem that sometimes I see is that someone will create some app or program and it will almost seem like, “Hey, that’s a great solution. Now the person living with dementia can be at home alone.” No, just setting up a bunch of cameras that detect motion and alert the caregiver if someone goes through an open door does not solve the inherent problem. It doesn’t prevent a person from something bad happening to that person wandering out of the house or what have you. When I get these messages from people who say, “Hey, I want to disrupt dementia and I’ve got this app…” please pause and think, “Is this really solving a problem?” Or is it just focused on something that’s not really the crux of the issue? You know, because somebody’s memory is not really the thing that we need to fix necessarily. Hope this was helpful! If you are talking to somebody who’s thinking about developing an app, please go ahead and send this over to them, just to get them thinking if this is really worth their time to build. Visit my Youtube channel for more tips on Dementia Care!

July 11, 2022

Dementia Care Calendar PET PEEVES

Here are my biggest pet peeves. When people are building dementia care calendars for their dementia care communities, they end the calendars at three o’clock. I don’t know what this is besides the fact that maybe who’s ever in charge of the calendar is going home around then. I think it’s probably more that people think since residents are sundowning, that the calendar should stop. No calendar should not stop because your residents are getting more agitated. If they’re getting more agitated, it’s probably cuz they’re bored. So instead, let’s have things on the calendar for them to do and not stop the calendar at three o’clock. I also get asked a lot about, well, what do we do? How do we know what to do during the day? I have a book about this and it’s called creative engagement. Creative engagement is my second book from Johns Hopkins university press. And it tells you all sorts of ideas about what to do with your residents all day, every day. My favorite thing for a program director to do anyone who’s planning a calendar after they go through my program director course because I have a course specifically for them is really chat with them about building a theme. This doesn’t mean like ice cream a day, but it means have an outline for your month. And this really is every month, but you know that at 11:00 AM, you’re always doing a brain activity at 11:30am. You’re always doing an art activity. I’m making this up. You probably need to space these out more, but that way at 11 you’re going okay. Brain activity. You’re not going to write brain activity on your calendar because that’s another big pet peeve of mine just like art exercise. Well, what exercise, what art? So use the general outline you’ve created, use the theme you’ve created and then go look at your list of activities you could pull from and put that on your calendar. So a big pet peeve of mine is when people don’t use any specificity and they just say, art, tell me what it is. Someone else picking up your calendar should be able to know what is going on. They shouldn’t be like, what, what is this? What does this mean? Right. Another pet peeve of mine is when we use these childish names like glitter girls nails, right? Which I assume is nail care. We can just say manicures. We don’t need to use some cutey kiddish name because we’re working with people with cognitive impairments who are full grown adults and probably older than us. And we need to treat them with dignity and respect and age that they are. So those are a few of my pet peeves. I have a whole bunch more in my course. And I also have a lot of ideas for you in my second book called creative engagement, which you can find in the link in the description. And you can also find if you just Google my name or go to rachaelwonderlin.com or go to Amazon and type in Rachael Wonderland. Amazon will ask you, did you mean to spell it R a C H E L. And the answer is no you didn’t because my name is R a C H a E L, but regardless, you’ll find it there. Use my book, seriously, look through it. I have tons of ideas in there by chapter – literally, step-by-step things you can do with your residents, living with dementia, tried and true. So I really hope these were helpful quick tips for you! Visit my Youtube channel for more tips on Dementia Care!

July 4, 2022

WHY you should join a dementia support group

I’m constantly telling people to join a support group. I have found over the years that if I call something a support group, like a virtual support group, people are less likely to attend than if I call it a name of a webinar, like, “We’re going discuss behaviors in dementia and hallucinations.” Then people show up. But at the end of those webinars, what happens? Everybody wants to talk. Everyone’s got so many questions. And what I end up doing is usually going accidentally over time because people have so many questions. So I’m constantly telling people to come to my support groups. I do a support group as of right now, every second Thursday of the month, and it’s a great opportunity to come and get some free dementia care assistance. And it’s not just because you get to talk to me because honestly, that’s not really what it’s there for. I really want you to come to the support group because you’re going to get to talk to other care partners, other people who have a spouse who is living with dementia, other people who have a parent living with dementia, a sibling living with dementia, or a friend. Whoever they are, they’re the ones who really, you know, are going to be able to help you because you’re all there to help each other. And no doubt some of the questions that you have for me or for them, someone’s going to be able to answer. And there have been plenty of times where I don’t even know the answer to a question, especially if it’s like a state-specific question, but sometimes there’s somebody there from your state and they’re like, oh, this happened to me and I know who you could contact. So, really think about coming to a support group. If you’re watching this video, you know, you’re like, ah, okay, I’ll think about it seriously. Just come, just try it. You can just sit, you can have your camera off. If you want to, you don’t have to say anything. Coming to a support group is an excellent way to get your one-to-one questions answered about dementia, not just by me, but by other people who are very much in your boat or in a really similar nearby adjacent boat. So these are all great ways to get help so truly consider it! And if you can’t bring yourself to come to something with the phrase support group attached to it, come to one of my webinars and we will get you in that way. Thanks. Visit my Youtube channel for more tips on Dementia Care!

June 27, 2022

Dealing with Dementia Myths

Transcript I’m going to address two of the myths that I hear frequently about dementia. The first one is this. “He still knows who he is, so he doesn’t have dementia.” I’m not totally sure where that one came from, but I hear it frequently enough that I figured we should talk about it. People living with dementia pretty much always know who they are. I’ve never – in my entire time of working in dementia care communities or working with home care companies or just knowing people living with dementia, working directly with them, working with tons of caregivers all over the place – heard of anybody living with dementia, not knowing who they were throughout their entire disease process. People know their names. I mean, your name is really one of the first things you learn when you are very small, right? That’s something that people call you and you respond to it. It is deeply, deeply stored in your long-term memory, and really everywhere, to the point where if someone in a restaurant, has the same name as you, and they’re talking about like, if I hear someone say Rachael, I’m like, right. It’s just normal. It’s a habit. I respond to it. I’m like, “are they talking about me? No. Okay.” So that’s a myth and we never want to rely on something like that to diagnose or not diagnose dementia. The second one is very related to this, which is, you know, he, she, whoever still knows who I am, therefore they don’t have dementia. I hear that one a lot, too. And it’s the same kind of saying most people living with dementia go through their entire disease process, being able to place everyone on their timeline. And if you’re wondering what I mean by timeline, there is a lot more about this on my YouTube channel, what I call Timeline Confusion™. And of course, in my blog and on my podcast, in short, timeline confusion is a term I defined, which means a person living with dementia may have trouble placing a loved one on a linear timeline. You may have seen this. If a person has trouble recognizing you and think that you should be much younger than you actually are. This is what happens sometimes is that a person living with dementia will have trouble placing a person on their timeline. And then that is the issue. It’s not that they don’t know them. It’s not that they don’t love them. Even all that said, most people living with dementia will be able to place their loved ones on their timeline for the vast majority of the disease. And using this as a marker to say like, oh, well, they don’t have dementia because they know who I am. Well in a very early stage of dementia, that is not, the timeline is not even going to be a problem. So we definitely don’t want to rely on that one caveat to the first thing that I was talking about. You know, he still knows who he is. You know, if a person is looking in a mirror and they don’t recognize themselves, this one would be super late in the disease process. And you would definitely know they had dementia by then, but then two, that again would be a timeline confusion. They’re not sure why they look so old. They still know who they are, but looking in a mirror, they’re like, who’s this old guy that can’t be me. Right. So that’s what all that’s about. But we never want to use myths like these, or like one definition to define what dementia is or be like, oh, this person has it. Or doesn’t have it because of this one thing. You know, sometimes I see being passed around on LinkedIn and Facebook, this picture of like, it’s like a jumbled picture of a face, but there’s a lot of stuff going on in the photo or the image. And it says, if you can find the elephant, you don’t have dementia. That is absolutely ludicrous. I have no idea where that came from. That is nonsense. Don’t believe that or use one marker as a boom, they have dementia because of this one thing, or they don’t have it because of this one thing – we need more information. Visit my Youtube channel for more tips on Dementia Care!

June 6, 2022

Introducing my new dementia consulting program!

Transcript I’m here to introduce my new coaching program, but I have to be honest with you…I was really hesitant to introduce any sort of coaching program because I get really nervous about the whole coaching coaches to coach vibe of consulting. In self-employment, there are a lot of people out there who will say, “Okay, I’ll coach you to do a thing so you can coach other people to do that thing.” That’s not what I’m trying to do here. This coaching is for senior living companies who want to create their own dementia care program. And they just want a little bit of guidance about how to do that. Because to be honest, creating a dementia care program is pretty intense. It’s a lot of work and it’s hard. And if you don’t know where to start, it could be pretty overwhelming. My coaching program is for three months. It’s going to be a biweekly call with me and my team. And we’re going to walk you through how we create dementia care programs and how you can do the same. This is going to be a really great program for anybody who has one building or maybe just a couple of buildings. Or they are a company that has a number of buildings, but are not ready to pay for my six or 12 month consulting program, which is going to obviously be more expensive than this. This coaching program is only $5,000 and it’s three months of time with me and my team. Again, a great opportunity if you are interested in developing a dementia care program that is going to be branded and unique to your company so that you can grow out across all of your buildings. This is a great way to do that. People ask me all the time. Okay, Rachael, what is the difference between what you do as a dementia care consultant and what someone else does like Tepa snow or David Trel? And that’s a great question because those are really great consultants. When you work with other consultants, typically what happens is that you’ll buy a program from them and then you’ll apply it to what you have. With me, I help you build a program that is unique to you. There are dementia by day standards that I recommend everyone go by, but when you’re working with me, I actually help you build a uniquely branded program. You come out with a logo, you come out with copy for your website, the whole nine yards. So in this coaching program, I’m going to be showing you how to build that dementia care program. If that is something that is interesting to you, I’ll be opening up the coaching program this summer. So if you want to get in, now is the time and you can do so, here. And if you, any questions, feel free to reach out. Thanks. Visit my Youtube channel for more tips on Dementia Care!

May 16, 2022

My fave dementia care products!

Transcript Hey, everybody coming to you from Tennessee, where I’m in a rental car. This isn’t my usual car. And I’m going to show you all some products that I’m giving to one of my favorite clients in a few minutes – Remember Me Senior Care. So you get to see what I’m going to give them. All right, here we go. When I go see clients, mostly the gifts are for the people living with dementia, but that’s the whole thing, right? So here they are. I’m going to be excited to get this outta my suitcase. This is a baby doll. You can find these guys on Amazon. They’re called Barringer babies. I think they’re also, what is the other name for these? I don’t know, look up Barringer. You’ll find it. They are bigger. They’re like 22 inches. So they’re a little bit bigger. These are the best ones. Truly, truly, these are the best they’re soft. They’re squeezable, they’re cute. They have different outfits and different ethnicities. These are the best, and they’re a great price point as well. So you’re not spending a ton of money on baby dolls that may go missing. You may need to buy a few of ’em. Next, the books Finishing Work and Finishing Lines. I got these off the elder song website. If you were hoping to get some of these, you better go on like right now. Because I think, I don’t know if it’s just a sale or they’re shutting the site down. I don’t know what the deal is. I love these books. They were five bucks, and usually they’re 10. So you read out the first part and they fill in the blank. So peanut butter and everybody says jelly, right? Apple pie. And there’s a lot of maybe answers here, but ice cream. Okay. So these are great for groups. They’re great for individuals. I’ve used these with people who really have trouble verbally communicating and they still do well. The finishing words it’s like words that start with, go with go not bad, good. A Disney dog character with long black ears – goofy. So some of these are a little bit harder than other ones. But I love these. I also love the finishing lyrics books. So if you happen to find that, maybe let me know in the comments too, because I was actually looking for finishing lyrics and could not find it. And then I’ve got Aqua paints, love, love, love, Aqua paints. You give these to your residents, your loved ones living with dementia and they paint with water on the sheets. So they paint with water and outcomes really beautiful paintings. And so, because it’s Remember Me senior care and they have a farm-style look and feel they are going to I think really love these guys. And then of course, last but not least, this is my own thing. So these are little pins from me at Dementia By Day. And it’s for companies and their staff who go through my trainings. So Dementia By Day pins and the staff members get to wear them around. They’re really cute. They’re nice. They got a little backing on them. Good quality. I love these pins. So those are some of my favorite products in the dementia care world, and three different places where you can find them. You can buy these on Amazon. You can also buy these on relish. Just type in relish, R E L I S H and type in dementia, and you’ll find it on Google baby from Amazon and the finishing words, lyrics, books, lines, books it from elder song. If you Google this word, you know this phrase, hopefully, you’ll find it anyway. Hope you enjoyed that client gift debut. And if you have suggestions for your favorite dementia care products, I’d love to hear about it. You can send me a message on Instagram or put it in the comments below! Visit my Youtube channel for more tips on Dementia Care!

May 2, 2022

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