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Informed Aging
A podcast about health, help, and hard decisions for older adults.
Informed Aging
Episode 70: Dementia Caregiving Improved with Behavioral Science
What happens when a licensed mental health counselor finds herself on the other side of care, grappling with her mother's Alzheimer's diagnosis? Join us as we welcome Ms. Bobbi Barber, who shares her compelling journey from the first signs of her mother's cognitive decline to the invaluable support she found in the Alzheimer's and Dementia Resource Center.
Together with Bobbi, we uncover the transformative power of behavior analysis principles in dementia care. Learn how small environmental adjustments, like color-coded cups and medication compliance tools, can lead to significant improvements in caregiving. We also discuss the profound impact of creating predictable and comforting environments to uphold dignity and independence for those with memory challenges. This episode offers a heartfelt blend of personal anecdotes and professional insights, providing listeners with practical tools and strategies to enhance the quality of life for both the person living with dementia and their care partners.
Welcome to Informed Aging, a podcast about health help and hard decisions for older adults. I'm Robin Roundtree, a former family caregiver. I've worked in the home care industry and now work for the Alzheimer's and Dementia Resource Center.
Edith Gendron:Hi, thank you for joining us today. I'm Edith Gendron Robin's co-host. I'm the executive director here at Alzheimer's and Dementia Resource Center. I have 40 years of working with adults, primarily seniors and elders in need. I'm a certified positive approach to care trainer and consultant, and ADRC is a designated positive approach to care agency. Also, I'm a certified trainer for savvy caregiver.
Robin Rountree:The thoughts and opinions expressed belong to Edith and I, not our wonderful employers and sponsors. This podcast is a service of the Alzheimer's and Dementia Resource Center. We are not affiliated with the Alzheimer's Association. Before making any significant changes in your life or your person's life, please consult your own experts.
Edith Gendron:Today we're going to be talking with Ms Bobbi Barber. She is a licensed mental health counselor, a behavioral analyst and a clinical behavior analyst. That's a mouthful, we'll be right back.
Robin Rountree:Senior Helpers is the only home care agency offering a revolutionary new way to approach senior care the Life Profile Assessment. This data-based app is a crucial tool in helping seniors age safely and successfully at home. Combined with our proven in-home care programs and trained caregivers, senior Helpers Life Profile is leading the way to better outcomes for our clients. For more information, log on to seniorhelperscom. Slash Orlando. For over 37 years, the Alzheimer's and Dementia Resource Center, adrc, has served as a Central Florida-based grassroots, nonprofit and community resource center. They are dedicated to providing support and hope for families and individuals caring for someone they love who is living with Alzheimer's disease or other dementia-related illnesses. Adrc empowers caregivers with the knowledge, support, skills and strategies they need to help them confidently prepare for the challenges that lie ahead. To learn more, visit the website adrccaresorg. To learn more, visit the website adrccaresorg. We are back with Bobbi Barber, and can we just briefly go through all the letters? After your name? We've got MS Master of Science Nice.
Bobbi Barber:LMHC Licensed Mental Health Counselor, bcba Board Certified Behavior Analyst and CTP Certified Trauma Professional. Wow, there you go.
Edith Gendron:Sheified Trauma Professional. Wow, there you go, she's the alphabet woman.
Bobbi Barber:I know I spent a lot of time acquiring those.
Edith Gendron:I bet you did A lot of work, a lot of work.
Robin Rountree:We're going to talk about behavior and how to modify it, but first can you talk to us about how you came to learn about Alzheimer's and Dementia Resource Center Sure?
Bobbi Barber:One of the women that are in my office. She's another mental health counselor. We were just talking about our parents. Both of our moms have had some mental health issues and then, of course, at the beginning stages of trying to figure out what is the diagnosis, and she recommended that here's the resource, because I was like, oh my gosh, it is so overwhelming, and you and I had a conversation, I called to find out, and then it was just here. You spent so much time with me, it was so gracious and lovely, and then I just started to how can I take this resource and help my mom? And so that became the beginning of the arduous process of, you know, getting her diagnosed, getting some information and then putting it all together in a way that was beneficial to her life.
Robin Rountree:Wow, so how long did you help care for your mom?
Bobbi Barber:My mom. Well, that's the tricky thing, and I was thinking about that today. She had symptoms and signs way before I knew what it was.
Edith Gendron:Right, not unusual Not unusual.
Bobbi Barber:We spent many years helping and caring in ways that we were just like grasping at straws, didn't really know what this was. There was a lot of masking, a lot of oh well, it's this, oh no, it's this, and you know she's functional. But then it came to a point where she was no longer capable of working outside of the house, and then when she stayed at home and then just started declining, then it was all. The other elements were removed and so we had a clearer picture. So that was probably three years, and then the last year 2023, was probably the fastest decline.
Bobbi Barber:That's when I reached out to you. Was probably the fastest decline. That's when I reached out to you.
Edith Gendron:How old was your mom when you first started thinking?
Bobbi Barber:When my daughter was born, she had open heart surgery and she ended up having a pacemaker put in and coming out of anesthesia she had a small stroke and then it seemed that that wasn't the issue. Probably six months into her recovery she started to talk about her neighbors and so she had neighbors and the story became elaborate and more elaborate over the years and at first you were like maybe the neighbors are a problem. I don't know, them.
Bobbi Barber:So you just took a lot of things that she said. So it was about 10 years. She spent five years really discussing the problem that she had had with her neighbors and then we started to be like, okay, well, that's, I don't think that that's what's really happening. But how do you prove it? Because she lived alone and she was working. So the second uh half, so it was probably about an 11 year journey total so the first five were just very dismissed.
Bobbi Barber:The last, the second five, the first three were like. The last two was like this is it? This is what dementia looks like? This is alzheimer's.
Edith Gendron:This is cognitive decline we know now, of course, through research and other good evidence, that changes in the brain can occur up to 20 years ahead of time. I know so before we really recognize symptoms. And yeah, you know, we had the same thing in our family. We had someone who had a really stressful job, and so we all wrote it off for years.
Bobbi Barber:You can discount a lot.
Edith Gendron:You can.
Bobbi Barber:You can convince yourself oh, it's not that, or it's this. It masks so well.
Edith Gendron:It does.
Robin Rountree:It really does. You had called me a little while ago and said I want to talk about how I used applied behavior analysis as a caregiver, and I said wow, those are some big words you are throwing at me. So give me a little definition of what you mean by applied behavior analysis.
Bobbi Barber:Okay, ABA or applied behavior analysis. It's a science and it's how we study the interaction between environments and behaviors. So it's almost this external view when we can't access the interstate how do you feel, how do you think? And it's applied to working with traditionally with developmental or intellectual disabilities and animals. You may hear it at SeaWorld a lot. We use positive reinforcement and pairing and it's because it's the interaction between the things that you can measure and observe all the things in the environment that has helped me, my history with that, helping my mom, because a lot of the times she didn't know how she felt. She didn't know and her thinking was so erratic or unexplainable she didn't have the words for it. So we can look at the environment and that's what ABA is is how can we make environmental modifications to improve behaviors? And then we isolate behaviors for increased and or decreased, and it totally applies to caring for dementia, alzheimer's, seniors and any kind of cognitive delay.
Edith Gendron:That's a positive approach to care. Yeah, it is we look at what we can control, and that's the environment. Exactly, and the environment is more than the trees and the flowers.
Bobbi Barber:It's all the stimuli that are present right. So myself, I'm a behavior analyst. My sister-in-law, who lived close to my mom, who helped. She was also a behavior analyst. So together we were more effective because, even though it was my mom, you can take away that little bit of the emotion and say, okay, I'm not going to have an emotional response to this. But how can I look at this from another perspective? There's environmental conditions that I can be effective in manipulating so that I can be helpful, and then I can go to the side and, you know, handle my emotions separately. But not having an emotional response in the moment was very helpful.
Edith Gendron:We teach people to put up that. I call it a glass wall stand behind.
Bobbi Barber:It be a clinician. It is. It's about that perspective taking. It's really good stuff, all right, so really it's.
Robin Rountree:Let's give a really easy example. Okay, I hate the color yellow. You stick me in a room that's completely yellow when I'm not feeling good. Maybe I can't express to you that I'm not feeling good, so you would put me in a room knowing what you know. The environment changed me into a nice blue or green room and I might cheer up a little bit, is that sort?
Edith Gendron:of a very that's right on. Okay, absolutely right on. Okay, absolutely right on. You know, anything that causes the wanted behavior to continue is something you give someone that they want to take away, something they don't want. A yellow room right, that's super basic.
Robin Rountree:Okay, okay, awesome. So what were some ways that you use these principles in taking care of your mom who had dementia?
Bobbi Barber:Okay. So I wrote down a list, but I brought the top five. Okay, the first one is the medication. I wrote that because her medication was a huge environmental condition that we needed to figure out and as a caregiver, had we not realized that, how medications are so damaging and affecting. So medication compliance was a part of that. How can we make sure that she is taking her medications correctly? So we took out all of her meds, wrote them all out, looked them all up. We consulted with a nurse and she said this is for what? All the things. Okay, well, what can we narrow down? And that was sometimes a little bit of a talk between her primary and ourselves Like these are her current meds. Can we get them to once a day so that we don't have to worry about her taking it twice a day?
Bobbi Barber:Right and then there's a hero machine. Have you heard of this machine?
Robin Rountree:No.
Bobbi Barber:Okay, it's a dispenser. It's an automatic dispenser that you program and put them in the back of the cups and then you set it for what time of day or how many times a day, and it will. We have an app so we could see if it was dispensed and it tells you how many are in there, and so it would light up to blink and then they would drop into the cup and so automatically. She's not adjusting, or did I?
Edith Gendron:take this.
Bobbi Barber:I don't remember if I took this or not, so that machine was super helpful. So narrowing down her medications into the least amount of medications one time a day and then using that machine was very helpful. And then we paired it with colored cups, so isolating her environment. So she didn't have 30 choices of cups. Choices of cups there's a water cup that's purple and water goes in that one and she was comfortable with that. Then there was the yellow cup is where she would put her meds. So if the yellow cup was empty then I knew we could see. Okay, she did take those her meds because they were in just the yellow cup. So we paired up colors with things that were familiar, that she could see, that were bright and easy too. So sanitizing her environment was one of those things, making sure that there's not 40 options.
Robin Rountree:So sanitize. You're not talking about cleaning. You're talking about minimizing the amount of things that she is looking at and that her brain has to handle.
Edith Gendron:Taking away what she doesn't need, right? Yes, choice is important, but if you've got seven cups instead of one yellow and one purple, you've got a problem, right?
Bobbi Barber:And if you start to pair things consistently over time then it doesn't have to become a fight, a battle or you get into those arguments about or just the exchange, and so then she has a lot more independence because she knows that. She knows that, she knows that her purple cup is her water cup, right.
Edith Gendron:Yes.
Bobbi Barber:Yeah, so the sanitizing of the environment was about minimizing distractions, complications, or just she would get overwhelmed, and then overwhelming becomes, anxious, becomes, then I don't make good decisions, then she just it just said everybody else.
Edith Gendron:You're heading for a catastrophic reaction or withdrawal, and that's as bad People think. Well, she's quiet, yeah, but it's hard to bring somebody back.
Robin Rountree:So yeah, all good stuff and like a pack teaches, you know when you still give them their choices. Getting dressed is do you want this one or this one? Give them a nice, easy choice of two.
Edith Gendron:But this system, the hero machine, that whole system gives her all the control, all the power. So it's choice in that way, in the sense of I'm in control of my environment, of my actions, Could she have chosen not to take them out of the yellow cup? Yeah, but then they can tell right. So they can tell right, so they can make an adjustment to that. So it's good.
Robin Rountree:And another thing I'm thinking of is our frustration that some doctors wouldn't prescribe physical therapy, because, oh, they'll never remember. But you definitely showed us that Getting those two things every day has a pattern. It does.
Bobbi Barber:There's a lot to say for consistency, and that was on there creating a daily plan because you can have autonomy and still have predictability, and a lot of the times when you don't have a predictable system, that increases fear and anxiety. I don't know what is next, I don't know, I become out of sorts, which is a part of that dementia, part of that fear based of I don't know what's coming up next, Then aggravation, agitation, and then you know all the things that happen.
Edith Gendron:We all want to know what's going on in our lives. Surprises are nice if they come in a Tiffany box, but that's about it right. But, yeah, knowing when something is due is important. The routine is critical, and that's what Bobby's describing this routine and yes, thank you very much, our people can too learn, so there, yes.
Edith Gendron:And we know from Josh Freitas. Have you ever read his book Dementia Concepts? Josh Freitas is a fabulous young man who does work with folks and has done a lot of work on color. So when you talk about color coordination, it's like, yeah, josh, would love to hear that.
Bobbi Barber:He's right. Well, there's so much that you can do to set them up to be successful, and that's what we're talking about really is, you know, in the beginning with the environment, they're called antecedent manipulations how can I set you up to be successful? And then brings in their personality, their history, who they are as people, for the autonomy, do they like predictability? Do they enjoy the sense of independence? What does that look like in the here and the now?
Bobbi Barber:Sanitizing the environment can still be a part of that, with limiting the overwhelmingness by still not compromising their independence. And so we found a lot of that. A lot of the ABA came into it. So there's like, you know, there's like a hundred little things that we did in there, especially if there was frustration, aggravation or irritation, you know how do you deescalate too. Those are environmental conditions and things that you can do as well. These were just like little things that we could do in the very beginning to set her up to be successful and for all of the care team that she was surrounded with to be successful too.
Edith Gendron:Focusing on her abilities, not on what she no longer could do. And that's the core, positive approach to care right, maintaining that dignity and independence.
Robin Rountree:Yes.
Bobbi Barber:So talk to me a little bit about Right, maintaining that dignity and independence, but I do eat something. So is that kind of what you're talking about? Well, predictability does have a purpose, right? So if your mom wakes up and she doesn't know where she is, which can be very overwhelming, could be very scary so if her shoes or her slippers are in the same spot every single time, that could be that one stimuli, that one signal that grounds her in the moment. So if there are opportunities to build in variation and excitement and something fun to break up the monotony. But I have found, even with anybody, if you get agitated, you become fearful. Fear then leads to so what is that grounding thing that keeps you centered in the moment? And for some it could be that this is where my stuff is, this is my book, this is my remote, this is my chair, this is my go-to thing and you can capitalize on that I'm thinking because my toothbrush is in the same place every morning.
Robin Rountree:If it wasn't and I know sometimes if you're living in memory care the cleaning staff may move it to a different place, and that would kind of upset me, I have to say, yeah, it would, yeah.
Edith Gendron:It would, it would. It's really really important to have that. You know, when you talk about seeing her shoes, some people use a little photograph by the bedside right of the person. It's like, yeah, okay, I have a line, especially the person with the adult child or their favorite pet. Right Anything to help them orient to their place and time as quickly as possible with as much dignity as possible. She figured out she belonged there, right. We didn't have to tell her.
Robin Rountree:Yeah, because you may or may not be believed.
Edith Gendron:Right, absolutely, yeah, absolutely or may not be believed.
Bobbi Barber:Right, absolutely yeah absolutely, because memory then becomes you know if it's interrupted or there's those where you're like, wait a second, how do I orient back? And sometimes just an object itself will be comforting enough to reduce the fear, to calm down and realize this is, I don't need to be afraid, this is not a fearful situation, so therefore I can. Then it signals that these behaviors then come into play, which is a part of like okay, my toothbrush signals let's brush teeth, right, right. So predictability is great for everybody.
Robin Rountree:And something else. Trips outside the home can be a little stressful, very stressful, and it was just such a change in the environment for your mom that would add to the stress. Is that part of it?
Bobbi Barber:My mom particularly had early childhood trauma that she never fully realized, she didn't seek help for, and we would see it break through in different instances through time and being her child, I didn't really know what that meant until I grew up, had my own family, went through training, became a licensed mental health counselor, and then she would tell me things I'm like, oh my gosh, that is awful, right, like we knew it was awful. But as I became a professional, I'm like that is trauma. You have unrealized trauma that has never fully worked itself out. So, as it was coming through, okay, that's a trauma response, oh, she's having a memory and it started to break through more as she was declining, and part of that was she was fearful of the outside world and part of that was she was fearful of the outside world.
Bobbi Barber:And so the more time that she had spent keeping her environment isolated and her isolated, the stronger those stories, the stronger that thought, that imagination had become, to the point where she really did not want to leave the house. And that's why you gave me that great resource, which was the virtual doctor Right, she loved it. She lit up on screen. I'm like you don't. Which was the virtual doctor? She loved it. She lit up on screen. I'm like you don't have to go to the doctor, but we can talk to her on virtual and I'll sit with you.
Bobbi Barber:And we did it and it was fantastic and my sister-in-law could be on it. So it was a collaborative and it was a way to invite other people in the family who couldn't we all can't schlep to the doctor's office and to neurology, and it also lowered her defenses. So she wasn't in a doctor's environment, right? So the environment of a doctor's office, with the people coming in and out, had traditionally signaled for her. She would behave very differently in the presence of a doctor Interesting. Yeah, she would be very stoic and just everything's fine, everything's fine, she would answer how they wanted to hear it so she could get out.
Bobbi Barber:She was always motivated to leave. So when she was in her own home and we had the virtual doctor, she was so calm, she was answering questions, she was very interactive. So that was a blessing the biggest one so far, so that was very helpful for her.
Robin Rountree:And that was what. When we talked to Dr Laird I'm assuming that's who you may be talking about the concept made sense to me, but I'm like it's great to hear that a person. They really were more relaxed at home A hundred times.
Bobbi Barber:It was amazing.
Robin Rountree:So we've got some this great information about applied behavior analysis that you describe very well, we could spend weeks talking about all the applications of ABA. But let's put you like you're looking at a caregiver who's new to this whole thing. Mom is staying in, let's say, the guest room for now. How could they go in there and look at the environment and see a few things they could improve?
Bobbi Barber:First look for safety hazards. Right, you know, is there anything tripping the grounds, knowing how the person that she's caring for, what is their gait, what are their abilities, how do they move? It would be, first of all, take inventory from a non-emotional state. What are their strengths, what are their weaknesses? Okay, so let's capitalize on the strengths. Let's minimize weaknesses or opportunities that they may or may not hurt themselves. So is there a predictability? What side of the bed do they sleep on? What signals can we have in the room? There's so many things. We could go down the list, but look at the environment and see how do they even move in the space would probably be my first. One is just to observe them. That's great.
Edith Gendron:Some of the things we have to keep an eye on, too, are things we here might take for granted, things like the pretty bar of soap that looks like I don't know an ice cream cone or a flower or something other than what it is. So sometimes when we think of safety, we have to go a little bit beyond the get rid of the rug Right.
Bobbi Barber:Right, yeah, I was just thinking like a tripping hazard if they shuffled their feet.
Robin Rountree:Yeah, yeah, yeah, yeah, absolutely, absolutely.
Edith Gendron:That may be Type of shoes right the type of slippers.
Robin Rountree:Yeah, and it is hard to have that non-emotional judgment, oh for sure. So that may be to tell your doctor. Could you give me a little physical therapy so I could get the safety assessment? Or just I need a safety assessment. Do you know where I could get one? Because it is so hard to see when it's your person to see that decline in real time.
Bobbi Barber:Yes, you have the initial emotional response which is oh, my goodness, this is too much, this is so sad. There's big emotions as an adult that you have looking at your mom, your dad or your person. Right, that can be devastating. And if it goes unchecked, you just go into the motions of oh, I'm going to care, I'm going to care for them and take care of them as doing the things. But when we ignore that emotional residue that we bring, that's a third element in that relationship that you may not be prepared for.
Edith Gendron:Yeah, you have to name it and you have to work through it. One of the emotions that happens so often, that people disregard, is grief.
Bobbi Barber:It's an anticipatory type of grief. There's 13 types of grief. Did you know that?
Edith Gendron:Yeah, there's a lot of grief. There's a lot of grief, there is a lot. One of the issues with our world is that you can't lay the grief down, you can't set it aside. It continues. It's like an aggregate it grows and it stays with you. And you know, nobody sends you a casserole or some flowers. It's sticky.
Bobbi Barber:It's a sticky area.
Edith Gendron:Completely different form of grieving than any other type.
Bobbi Barber:It's stressful. It's a stressful type of grief. And then you add on to that if you have children at home or other things that you are responsible to and for, and then if there's other siblings or issues or another parent.
Edith Gendron:Or you're not well yourself.
Bobbi Barber:Oh my gosh, the layers that can compound something.
Edith Gendron:One of the things we teach our families and we teach our primary care physicians that work with us, is that it's not just the person with the diagnosis. The whole family, everyone that's involved in that intimate circle, is involved in this illness. That is part of the illness. They need to be cared for and treated as well.
Bobbi Barber:I know, and that's when I first started. When I first contacted you, it was flooded Just information. Where do I start? Where do I begin? How is this happening to me? What am I going to do? Where do I start? So I had no grounding and it was just pacing.
Edith Gendron:Yeah, I don't want this. I don't want this to be happening.
Bobbi Barber:Oh, I don't want this, I want this in her life. Yeah, that devastation of this is my mom. What's going on?
Robin Rountree:Yes.
Bobbi Barber:It was hard.
Robin Rountree:I'm getting all sorts of chills over here, but that's why we are here, the Alzheimer's and Dementia Resource Center, and I got to give the plug. If you would like to support us in doing the work that we do, our website is adrccaresorg. Slash donate. We would appreciate your support. Bobbi, I know when we talked about you coming on this podcast, you thought you may have a book in you and I got to say I think you may have a book in you.
Bobbi Barber:We discussed a little bit of this, because there is the ABA part, which is the environment, and then there's the emotional stuff, which is the LMHC stuff, that it will never or cease to surprise me, the amount of layers as you process this part, sometimes, of our lives, this part of the story that we were never, like, prepared for.
Edith Gendron:Nobody wakes up or grows up as a little kid and says, gee, I want to be a care partner to my mom when she has Alzheimer's disease someday.
Bobbi Barber:And it's so different to look at your parents that way. It challenges you on every level.
Edith Gendron:Yep, one of the things that I think we need to mention, because we are talking about responses to the environment, is with progression the environment has a greater potential to be a bigger influence on a person. Others do too, here at this table. If somebody encourages us to eat a donut, we can say, gee, no thanks, it's not good for my health. We understand With progression that ability to weigh good choices goes away, and so the environment, other people who are part of the environment. They can have a stronger and stronger influence on the person's response to that stimuli. So it gets tricky.
Robin Rountree:Yeah, and it just the how you teach us.
Bobbi Barber:You know, your vision changes and so not to come up from behind because you're going to scare the crap out of them, right?
Robin Rountree:Right, oh, so much to uncover.
Bobbi Barber:Well, it is Also how, at a senior's age, how do they organize information in their mind?
Robin Rountree:Right.
Bobbi Barber:So they are also absorbing everything that's taking place. Sensory overload is a really big thing, like your nervous system just gets flooded. And then how do we think, how do we behave? How do we talk? How do they not talk? They don't even. Sometimes you can't even process words right. And then if there's any regressions in development or old things bust through and emotions come out, memories emerge or past life experiences that you didn't even know existed. So many things right that you're just like wait what?
Edith Gendron:One of the things we remind families of is to be very cautious around the major holidays, because you know, when you take everything down and then put up all that Christmas stuff, for example, it's a whole new environment and you got flashing lights and music and wow, yes, tell our listeners one more time what ABA is.
Bobbi Barber:Applied Behavior Analysis.
Robin Rountree:Very nice, and so you are the founder and CEO of Mindful Counseling Florida. If someone wants to reach out to you, is there a phone number or website?
Bobbi Barber:Sure, mindfulcounselingflcom or at Gmail, it's the exact same thing. I can be reached at 407-796-1580.
Robin Rountree:We'll put that in the show notes in case you're looking for that. Thank you so much for using our services and then for giving back and letting us know how you did it a little bit better so much.
Bobbi Barber:I feel like you're a great resource. It was so helpful and it really did pivot us and better us, meaning my family in directions that we felt were very useful, and to feel like you have power when there's a powerless situation is just beyond. It's huge, yeah, yeah.
Robin Rountree:Please make sure to subscribe to our podcast Informed Aging. Tell your family and friends about us. You can find us at facebookcom slash informed aging. Today's episode was recorded at ADRC's podcast studio. That's it for now. We are looking forward to our next visit.