Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient

hi everyone reign talks I'm Deborah Khan founder of being patient today um we are so pleased to announce that we have one of the world's leading expert advisers on caregiving deepest note joining us from Cincinnati Tifa has a lot of experience and what I love about her research is she really studies the physical changes in the brain with dementia and advises on the best behavioral approach it's an area that's incredibly difficult for a lot of us who have loved ones with dementia so Tifa thank you so much for joining us oh my pleasure it's great to be here and I love what you're doing that outreach is so necessary it's called translation thank you thank you so much so I want to first start with a term that you've coined positive approach to care tell us what exactly that means yeah so when we talk about people's brains dying I mean we can get real into the downside of that I mean in people's brains are dying I can't stop it I can't even halt it and in reality I can't even slow down the deaths of brain cells I mean I can't personally what I can do is help you use what you have left at any moment in time so as long as you have something left I feel like it's my job if I'm gonna work with you and try to do things with you to use what you have um and not to ask you for what you don't have in that moment whether it's chemical or whether it's structural so if you say to me listen I don't know who you are rather than saying well I'm your daughter who do you think I am which is sort of a natural sort of reaction to that because it's like well how could you not know who I am but to hear in that moment wow you've lost Who I am to you um so say you're not sure who I am so if you say to me I don't know who you are rather than reacting to it in your head go whoa lost in place and time not sure of me okay you're not sure who I am so do I look familiar do I not look familiar to you well you look familiar well that's good so do I seem friendly cuz that's really important well yeah I mean you seem friendly too we're on to two good things um have the do you recognize my voice at all well yeah yeah yeah I'm somebody who loves you my name is Tina oh and if the person goes oh well isn't that odd because my daughter's name is Tina then what I have to be willing to let go of if I'm gonna be with you really be with you where you are is the idea you're not doing this on purpose in your mind you see a keeper and it's not me and I'm also named HEPA but I'm not that person yet because you can't get to the memory that links me to me so I could say wow that is interesting so now let me ask you something is she a good kid or does she get in trouble oh she's great she still hasn't found me but I have to be willing to be with her and say well that's interesting so let me ask you something is there anything that while I'm here I could help you with let go of the idea that in this moment she's gonna Know Who I am to her and isn't really important well yeah it hurts but is it really important in this moment that she be accurate about Who I am or did I really come so that I can be with her for a little bit and the fact that she can't figure out who I am can I let that part go and still be with her or yeah signals is you know I've noticed with my own mom that it seems like a lot of her EQ her emotional intelligence is still on cue although her memory gets worse and I was wondering and I often think about this and I think this is part of what your technique highlights is you know people with Alzheimer's can still feel things they can feel emotion and so if if we were to say you don't remember me I'm your daughter I mean that's that why would you're not my daughter my daughter would never act like that and so what's happening is your behavior is atypical for my daughter and it is because you are so blown out of water that I don't know who you are and the idea of taking that and and pushing it down and moving it off to the side not forgetting it but you go you don't forget it so here's here's a reality check you'll lead a timeout at some point and you need somebody to go talk to about what I just did because I didn't do it on purpose but it at the same time you're not gonna be able to let it go without processing that because your brain did take it and it dealt with it in the moment because you get it how important it is to be there for me and to not react to me it doesn't help us because I get hurt you get hurt and this just makes it harder for us to do the things we need to do with each other I just really think in that moment I'm gonna be willing to take a shower with somebody I don't like how much do we know about emotions and the emotional capability of a person who has Alzheimer's I mean obviously it differs according to what stage they are in at the time but from your experience and your research how much of that emotional capability stays present in in other words how much do they feel in terms of hurt and love throughout the course of this disease yeah now this is where it gets a little tricky because it now also depends on the tide of dementia in other words what parts of the brain are being attacked for instance if the person has a frontal temporal lobe dementia where the front of the brain and the temporal lobe are being attacked they have a higher risk of losing the ability to have emotional connectedness because that's mediated by the prefrontal cortex so I can't show you what I'm feeling because I I've lost a way of doing that so I could say to you well I'm very sad about that idea that you don't know me I don't you I don't know one of us I don't know I don't know the thing I know about you I don't know it's not right and you can see I'm confused but it's hard to see my level of distress because I've lost that ability to express it or in some dimensions like frontal temporal I might not feel it I'm not feeling the emotion the same way I would have because the part of my brain that allows me to feel emotion is actually being flattened and so that flat effect is part of my dementia but for Alzheimer's that's not the case people who live with Alzheimer's are frequently more released into emotion and I don't know why you're so mad at me why are you mad and you'll say well I'm not mad mom I'm just frustrated well you look mad look at your eyes look at how they're all squinty at me you think this is funny because what I saw for a second was just your your lips doing your lips just did that and my eyes picked it up cuz I'm very focused on visuals and I'm trying to figure things out and that sometimes make me intense because I'm so I have a very tunnel vision of what's going on and I can't see big picture so a lot which is you know I have to stop myself I've learned and I've gotten much better saying oh you don't remember because it's just kind of a natural thing oh we just talked about that ten minutes ago you don't remember didn't tell them a little bit about the impact of saying you don't remember to somebody suffering from Alzheimer's disease yeah so the part of my brain that's damaged is the hippocampus and the hippocampus is the part that takes a piece of data locks it in and then has it and so when I say to you so what time is my doctor's appointment and you say even give me an answer whatever the answer is make one up four o'clock today yes oh okay well I wish you'd said something about it that's your cue to recognize you've got to recognize in that it's on the calendar mom I mean you we put it on the calendar we just had this conversation this is that moment where you have to realize if you're gonna be helpful I'm missing oh I'm missing a file cabinet that's marked what's happening today and even though we went over it multiple times every time you say it and then I say oh four o'clock you put it in your file cabinet again and allured we've been in and out of that file cabinet multiple times but my file cabinet cuts and so although I thought I filed it when I look there's no file cabinet so I don't hold on to it so every time I'm asking the reality is I don't have it I just don't have it now the interesting thing is you and I use what's called working memory and immediate recall but that's where people with Alzheimer's that's the part that they're missing they don't have working memory it's getting shorter and less so I used to be able to do five to eight and that was five and then it was three and now it's just there's something about an appointment the correct answer in Queenie so exactly a little bit more than that so the correct answer is no I got your question you'd say you're wanting to know what time the appointment is confirm the receipt of the information so you've got to slow it down even more and say you're wanting to know what time your appointment is because it pauses me it gives me a chance to realize she's asking me this question and she's asking me this question evidently she didn't get it so let me stay with what I heard her say because when she's talking she's not listening to herself she doesn't even realize exactly what she's asked so I say you wanted to know what time your appointment is it's at or o'clock now what did I change I added a visual cue a very strong visual cue and I do it with my hand it's at 4 o'clock right near my face and I show it to her so oh I gave her the data I gave it to her but in just verbal format I gave it to her in visual format and then I said oh hey mom asked of you did I give her the thing she asked for it if we've been over it five or six times then either she's not got the file cabinet to put it in or she's a little distressed about this thing we're doing and that's making it really hard for her brain to hold on to the details because this doctor's appointment or this appointment has her a little revved up and that says you know what I'm not getting anything in that cabinet until this appointments over I mean it's just not gonna stick so what I'll do is interject oh hey mom I have a favor to ask now what happens when I say that with energy what happened to you oh I have a favor to ask you yeah but yes but your whole brain went yes okay you're ready to catch the ball and what happened to you sending me the message you dropped it does you don't cannot you can really only do one thing at a time so I said would you do me a favor trying to remember back when I was a kid and you took us to the zoo do you remember which animals I seemed to like the best now what I did is transition us from immediate recall to long term to long term and these are stories you told me about going to the zoo and which animals I'd like so I have to use my memory of us to help you find another place where we can go and be together where you get to be smart and I can remember you don't remember you don't remember which is a reminder I have this terrible brain disease it's more positive and it's anxiety provoking when I can't remember things it's like I can't trust my brain oh crap you told me that already why can't I hold on to that so yeah it's very different absolutely so I have a question about perception I've heard you talk about this before too and I've noted with my mom when I'm driving in a car and she's a passenger she gets particularly she has a lot of anxiety telling me how to drive what to do and I it occurred to me after listening to you talk about how an Alzheimer's person with Alzheimer's sees things that she her vision is is probably quite distorted in the car that's making her paranoid of something so tell me a little bit about unpack that for me what is it what is she seeing that is not really happening because it you know it's so bad that you know you're cut your to a very slow stop at a stop sign - oh right yeah happening inside her brain yeah cool that's really important so what's happening is who used to drive the car she did who was in charge of everything about that car absolutely and so now she's been disempowered with her hands and her foot and her judgment but she's still in a front seat and her brain sorta gets it and can't hold on to it so at this point her brain is damaged enough that visual data is coming in but her view of the world has gone from about taking in this much data to taking in this much data to now taking in this much data and so stuff is coming streaming by her really quick and if she looks at it then she loses the front and so she then looks at the front it's like stoplight and and she's like oh oh it's coming really fast because he got distracted for a few seconds at kind of what was that and things are going by so quickly that if she tries to isolate on one object or one thing and then she real at her brain goes good but you're supposed to pay attention to the front because that's the rule and she doesn't have anything to control there's nothing what can't control anything and and then she's like oh you can just stop and so it's just your hands of dashboard and try to make person you're panicking so tunnel vision but with things coming at you yeah and if you were to put your hands around your tunnel like if you do it right now and I shove my hand at the thing it feels like I'm in your brain knows that I'm on the other end there's no way I could do it I'm not even in the same space as you but with only tunnel vision that thing seems to be approaching really rapidly and when I have no way to stop us what I have to do is rely on but if I turn to look at you then I lose track of what's out in front of me because if I learn to you oh my god you could crash so she's always been in control so for her to look away from the front to you oh my god I'm gonna lose it and she doesn't have a way to stop anything from happening other than yelling now that's what is being triggered is the primitive brains desire to be safe and it's like whoa whoa whoa whoa whoa Oh God oh jeez Jesus don't slow down slow down okay you're doing your own game almost stuttery holding her breath and becoming quite distressed and loud where hope but not being able to get sound out either direction it's a preserved chunk of brain in the right temporal region which is the rhythm section but it's also the forbidden word section and it's also the intensity frequency section and it's also where music poetry and prayer are located so these are great strategies I can completely understand why it would make the person with Alzheimer's feels so much better but as we know they have very limited short-term memory so it's gonna happen over and over again and we're gonna have to employ these same strategies over and over again what does it do for the caregiver I mean the caregivers are really suffering in all of this right what does it do for that well now all of a sudden they're empowered to because they can change the direction so rather than answering that question 16 times after the fruits 5 I now have a way to move us out of that place and when you say no I'm gonna put it's on now whoa geez we've got to slow it down don't wait yeah I was going sort of fast I am so sorry the idea that I have ways to chill you down empowers me because otherwise your emotion coming at me it's like mom we're fine and oh yeah bad at you which I don't mean to do but my brain gets triggered by your distress brain and the two of us mount in distress and so hey I say hey mom and I actually know how to take your hand and give it a little pump so I release oxytocin and I go you know I love you right and what I do is I put some music on that she likes to sing along with and we're singing together and her brain goes from visual input to auditory input and all of a sudden both of us are less stressed out that is percent guilty of all of those things that you see that we should do you can't help it better if you don't know what the better is all you can do is what you you know how to do and when you shot your wad you shot your wad and you're still in the car with her so tell us I'm curious I mean there's so many there's so many many stages of this disease and so much of it impacts interaction and how we interact with our loved one and behavior but I get this question a lot and I want to ask you this because a lot of people who turn to us it's in that initial stage of oh my mom or dad's memory isn't what it used to be when should I worry about that and I think that's actually a crucial point it's a crucial turning point because you know we all first dismiss it as oh it's mild cognitive impairment it's part of Aging and then you reach this point where you think oh there's something else there right and I actually think that's the turning point in a relationship from a daughter acting more like a mother to her parent our parenting her mother right so tell us a little bit about how to deal because we get this question all the time how do you deal with that initial stage where person is cognitively very capable and will be for you know a years a couple years to come or even more in some cases how do you deal with that well one of the things I think we don't do is help us establish baselines on ability and make that a conversation so that we can start checking things regularly without having to go to some official person so you know like hey mom I just did something and it said this would be a really good idea is to go ahead and do this thing every every six months and we're just good but something changes will notice right away and we can get everything double check to make sure there's nothing new or different going on like you're not getting diabetes or your thyroids got out of whack or it's not funky going on and it's it's pretty simple I use animal fluency as my quick check and I say what we're gonna do is each of us is gonna name as many animals as we can think of and I'll keep track of the time and we're gonna put it on and we're actually gonna record it audio record it and how many did you get let's listen Wow yep yep Wow 50 well mom you are pretty amazing let me do it we each do it and then six months later we do it what we shouldn't see is a huge shift in numbers we shouldn't see a decrease so one of the things I think what you're reflecting is that place where we let it go and we let it go we let it go and then we have to have a conversation about it but one of us may or may not know that it's a really critical conversation because we haven't had a really significant conversation we've just like yeah I think that's pretty normal me or maybe not normal but you know it's not a problem yet and we let it go without having those opportunities because when I want to have a conversation is before we ever get to that place but if we haven't opened the door for that kind of mom what do you think about how your brain has been doing lately on it you know do you think it's still great do you think it's sort of you're not sure or are you worried because if we don't have these conversations and then let's do our animals again and notice the real difference in cadence or notice that this time when I do it instead of listing animals I go I don't know why you're asking me to do this this is just this seems like this is beyond what needs to be done I can go see a doc and what it tells you is whoa I'm getting really defensive about something I'm hiding it so mom you think you should go see a doctor we shouldn't do this wow this is really different for me you know tell me about what's going on for you cuz I'm I'm concerned that our relationship has shifted a little bit cuz you're seeing me is getting bossy cuz I didn't mean to be bossy I was trying to do the things we've done before well I know but I don't want to do it anymore okay you're not wanting to do it talk to me about that so in other words we I think we skip the step of talking about the first shifts with I have awareness or I don't have awareness of my change and that's in the prefrontal cortices that's my Anacin osha if I don't have awareness and agnosia I do have awareness of my shift and I'm anxious because I do notice it and I want to talk about it or I don't okay this is a common one that pretty much anyone who's taking care of someone with Alzheimer's has this experience and and this question is what is the best way to handle my mother's paranoia about someone having been in her home while she's sleeping and moving her things around and also I can add to that stealing right there that stealing and moving yeah being like my house and stole all my clothes and I don't have a gas so they stole your clothes well that's not good so the first thing is what I did before which is to validate your concern so the first thing I need to do is hear the words and the concern you're expressing and so Wow so somebody came in the house and stole or you move things around well that's not okay so now you were sleeping and tell me a little more about that so the next phrase is tell me more about it because I actually want them to let out fear or the anger or whatever it is I need to hear a little more of what actually their brain says happened because I want to know how far off what I know to be the case happened how far away from where I think we are is my mom right now um she thinks people are coming in here and I said so you think somebody came in and took all this clothes out of the closet and put them in suitcases wow that is really weird that somebody would do that I wonder wonder what they were thinking taking everything and putting it in the suitcases well mom I am so sorry that happened what that should not be happening I'm gonna hang these clothes back this is ridiculous and you know what this needs to get looked into let me see what I can do about it how about could you give me a hanger great here let's get these hung back up now what I didn't do is mom let's be real you're the one who took them I don't know why you're taking everything out of closet I'm you want to explain that to me why are you taking things out and putting them in suitcases why don't do that who do you think did it you know I'm letting go of that idea because her brain doesn't remember truly it doesn't remember packing those clothes hiding those clothes taking those clothes and putting them somewhere her brain thinks clothes have been stolen because she thinks she's in another place and time she's in a different part of her life where I had different clothes in the closet somebody came in here and replaced all my good clothes with this show and played swears and it's like holy moly here and it's like her brain actually thinks somebody's trying to trick her okay talked earlier about giving a visual cue about you know four and the hand signal what about what if you had a camera and you could installed and you could prove that nobody entered the house is is that good visual reinforcement or no because its history its history and history you can try and but then what will tend to happen is so nobody came in here why did I think somebody came in here then what's wrong with you - why am I thinking this stuff am i losin it am I not so are you gonna put me somewhere because when I realized because some people do have awareness when I realize I cannot actually remember something that I see on camera it's like oh my lord how could I how could I have done that and not remembered it I can't trust myself and what you do is you pick your own goose and I mean that in a in sort of a real way because now if I can't trust my brain well whose brain can I trust Ringling Ringling Ringling sweetheart can you come over here I thought I heard somebody but I know when I hear people I don't really they're not really there will you come over and check because I don't get it right you know that so now we're gonna house a lot another one coming in is from a viewer who says my mom is now nonverbal she seems so sad and distressed how can I help her find some peace that's a great question it is a great question so let's go over on the side of the brain that still has auditory input but it won't be language so I want to start where she is so if she's Oh oh then the first thing I want to do is take her hand in a hole that's called hand-under-hand it's right hand to right hand but it's clasping in like a sole shape and it's really powerful because it takes and puts pressure our hands are both free but we've clasped our hands and was with a pad to pad contact it actually causes stress reduction and maybe you can show a picture at some point but I don't have anybody with me to do it with I do have photos of it but what I want to do is go oh oh oh mom mom now it really helps to know some of the songs that gave her comfort and rhythms that were comfortable and comforting to her so for my mom it would have been oh and I would go oh he's so long and I picked up the rhythm and we and my mom literally would open her eyes smile and start humming alone even though she was quote-unquote nonverbal but I had to find the right way to open the window because the door doesn't work anymore um but finding my way in requires both patients and also an assurance that rubbing across the back with a rhythm rocking humming along and if she's on a tabletop I come along and go I'll pick up a rhythm and then transform it into something that's up beat up energy rather than down beat down energy but I gotta start with whatever she gives me and I've got to be willing to be where she is first to help her come out of that place where she stuck comforting and soothing about it I could totally stand how I mean and what's so wonderful about what you are telling us is there is there is still a way in like agents there even after your stage and employing these brings the person who we love out right and and they can only stay there for just a few seconds but the chemistry what you did is you change the chemistry of their brain literally change the chemistry brain in a part that wasn't firing fired up it's still in there and so once that fires up literally for a few seconds sometimes people can say I love that song and you go me too amazing lady taught it to me so coming in let's I'm gonna speed it up a teeny bit so we can get to some of them so we have another question from a viewer saying what do you think about permanent treatment of dementia patients with neuro neuroleptics my mom has FTD and has had to take them so she can stay on in the nursing home I think what we've done is create prisons for people and we can either chemically restrain them or physically restrain them and sometimes we do both because quite honestly there are a lot of locations that claim to be dementia care facilities agencies organizations that actually don't do much training and they don't have much skill and they don't employ much skill but they have our lot secured units and medications and staff that tried their very best with very little training and I think until we as a society and ORS a nation say you know what people living with dementia deserve better they actually deserve to be cared for by people who have been trained to do this thing called dementia care and it's actually fairly complicated it's it's not rocket science but there is a science and an art to it and people deserve better than they're getting we often use medications to dull people down so that they feel less and they can respond less so that they are react less so that we can get away with stuff that we shouldn't be doing the way we're doing because you or I wouldn't tolerate it but because someone has dementia we indicate it's because we have meant to the back like this but I would ask you if I just walked up to you and starting to pull your dress up and say I'm gonna help you get changed what do you think your immediate reaction that would be embarrassing and what would you try to do just the person over well or would you try to push your dress back down and then I'll tug your dress up and you pull your dress down and then I call a second person to hold you so that I can get this done I mean in any other situation we get that's an unacceptable way to treat a human being except when people have dementia and then we allow things because well I can't get her to do it either and it's like I get that but there is a way to get her to do this that does not require her to feel like we're abusing and it has to do with blinking my hands in my brain with her and showing her so turning to the side and pointing to me and then to her and saying you you're going to do this here you pull your pants up pull your dress up but I have my hands with your hands so we're both pulling it up and your brain goes oh pull my dress up well sure I know how to do that and because I'm not right in front of you blocking you in it doesn't feel like an attack on you it feels like you're doing it and I'm here to support you and with addition they have ocular vision they can't take in but this much data that's it then I've eliminated the threat and the person can do it so there's a lot of potential we just aren't really realizing potential so until we've changed some other things there elliptic son fortunately for frontal lobe dementia is way too often what people use because they don't know what to do i what about people who are deaf who can no longer hear is there is there a way of communicating is it is it the same as we talked about before the hand-holding and the rocking yes and it's also think we've got to get really visually oriented and I need to be willing to pick up and bring with me two things one for me and one for you so that when I hold it up I hand you one while I show you what we're gonna do with it but I thought he'd get a lot better at props in cues and visuals because if you're deaf I've got to get more jazz handy but not random it all needs to be and then I show you that whatever I want to show you is here and now we looked at it but I've got to eliminate I need to get out of the habit of using very many words and I got a that means so thank you for I want to end though on what do you advise caregivers for their own health I mean we hear people suffering because of the stress of caregiving so what is your advice to caregivers I mean that the communication helps hugely but what about for their own health so I try to do things in sets of five because people can hold on to five things the first is you need enough sleep and if you're not getting decent sleep or you're not getting enough sleep or you're finding your sleep is being interrupted that's a very high risk for emotional distress and so getting sleep really matters the second is don't be a lone ranger we got to get out of this lone ranger business and we've got to form connections we've got to reach out and find people who will support us and I'm going to tell you that out of every five families or of them fall apart before this disease is over four families fall apart only one in fives pulls together so very frequently the people you think are gonna be your supports are not your supports so you're gonna need to reach out for somebody who does support you you need support you need somebody to go to when I said you know you got to not react to me when I say I don't know who you are what are you doing here you can respond to me but then you need a place to go and grieve the loss of your mother and you deserve that support you've got to get it so when you come back to me you're not carrying the baggage of that loss of me because I'm right here I'm just not how I was the third is that you actually are going to need to really deep stress you've got to look at what's stressing out and either learn some new things which is helpful or let go of some things that you're not able to do and ship those off to somebody else so it's either letting go of things you're not feeling particularly skilled at you don't have to become the thing for everybody you're not a lone ranger so either build your skill or to let go of some things and give it to somebody else so hand it off and then the next thing is what are you eating and drinking because invariably one of the things that we do as care partners caregivers is we start to shortchange ourselves and we get empty and we eat for comfort or we don't eat at all we drink because I've got to stay awake so I'm drinking more caffeine or I'm drinking something with sugar in it or I'm trying to give myself a little boost that little kick and I'm really getting into bad habits of eating stuff that's not good for me drinking too much of things that aren't good for me I'm not hydrated and I'm not well nourished and I've got to take care of my nourishment and my hydration in a reasonable fashion and the last is I need to get out out and exercise I don't mean a hardcore wear myself out but I need to get out and see things that give me pleasure hear things that give me joy I need to give myself permission to get recharged and it needs to be in an active way not in a passive go out and sit yes that's fine rest a little bit but we need to get out and get moving we need to engage in a way that gives us that boost that brings us back energized or the work you do and your incredible way of explaining things to us I mean what you say makes so much sense and I feel completely enlightened and I really want to thank you for your work how do we let people know I mean if people want to know more about advice from people where do they go keynote my name is weird that it's easiest thing to do a website with keynote palm and we have all kinds of three youtubes and video clips and things like that on there it's not like you know we have a free journal also and I know you guys do an amazing job and again we're another resource that if you're doing this you need to know about it because there's just of resources out there that are practical absolutely absolutely Thank You Tifa thank you so much for your time your sage advice and we look forward to staying in touch I'm sure we're gonna get more questions online we can read redirect people to your site or maybe you know if send them on to you for answers at a later time thank you you are so welcome thanks for the opportunity and thanks for what you do okay and you too will speak soon I'm

Channel: Being Patient Alzheimer's

Views: 181,156

Keywords: dementia, science, health, Alzheimer's, news, beingpatient, teepa snow dementia, teepa snow, teepa snow dementia 101, alzheimers disease, dementia patient, lewy body, brain health, lewy body dementia, lewy body dementia stages, lewy body dementia documentary, lewy body dementia end stage, lewy body dementia robin williams, brain health foods, dementia village, dementia symptoms, alzheimers disease patient, alzheimers disease explained, alzheimers disease stages

Id: EOCZInnLQd0

Length: 44min 17sec (2657 seconds)

Published: Tue Mar 19 2019