In this episode of Senior Living LIVE!, Melissa Lee is talking to Susan Robbins, Director of Dementia Training for The Arbor Company about the early signs of dementia and how they differ from normal aging.
Susan helps us separate normal forgetfulness from signs of dementia, talks about steps to take if you think you or a loved one are showing signs of dementia, and shares tips to help prepare a loved one who has received a dementia diagnosis.
- Hello, everyone, and welcome into Senior Living Live. My name is Melissa. I hope you are having a fantastic day today. Well, we are checking in and connecting you with Arbor staff and residents in an effort to arm you with as much information as we can about senior living. Today I wanna introduce you to somebody who is probably familiar to a lot of you out there, her name is Susan Robbins. She is the Director of Dementia Training for The Arbor Company. Susan, how are you today?
- Doing great. How are you?
- I am doing fantastic. Thank you so much. Well, first tell us a little bit about your role with Arbor, how long you've been there, and exactly what you do day to day.
- Well, I have had the pleasure of working with The Arbor Company for the last 11 years in many different roles, but the hat I enjoy the most is that of sharing information about dementia with our staff, our leadership team, and the public at large because there is so much information that gets lost in the clinical part, and Arbor's approach is how do we make each resident's life better? And how do we have the tools to do that?
- Right. And you have been a part of a couple of our webinars already and they are so popular, people just trying to get some answers to this mystery that is dementia. And if you don't have it, you don't really understand it. And so there are a lot of people out there who are trying to understand it. And even if you have it, you may not even fully understand it either. So let's start from the beginning. And I know you've been asked this question a lot, people want to be able to separate normal forgetfulness from dementia. So what are some of the early signs of dementia, Susan, and how can you tell the difference between this and the normal signs of aging?
- Well, as we age, everything we do slows down. What used to take you 5 minutes, can take 15 or 20 minutes. Good example is you have most people who have a routine to clean their house or pick things up, but used to be able to do it really quick in the morning and it was all done. Whereas now you might look down, it's one o'clock in the afternoon and you've just finished what used to take an hour has now taken two or three. That's normal aging and not to be concerned about. But when you forget what you were doing during the middle of it, or things that were important to you are no longer important to you is one of the early warning signs. My priorities change and I'm more in a survival mode as opposed to giving back and being part of things. I start to withdraw a little bit. Also, the memory piece is very effective. I think one of the things is if you go to the grocery store and you walk back out and you can't remember where your car is, doesn't mean you have early signs of dementia. We all do that. What happens is many times we get distracted by so many different things that when we get out of the car, we hadn't paid any attention to where the car was. So when you come out, you're having to recall and think through, was I going up or down an aisle, back and forth. But you have that thought process that allows you to eventually find your car. What happens with dementia is instead of logically thinking through a problem, I just become panicked and can't find it and walk around wildly with no thoughts or patterns to how to solve a problem. It's not only forgetfulness, but it's problem solving is one of the first things that starts to go. Name recall is huge. We all forget people's names or maybe call them the wrong name once in awhile. That's okay. My neighbor next door, Sally, I've lived next door to her for 20 years. And I go to tell her good morning and I go, "Hi, uh, um, how are you?" That's normal aging. It was just that momentary, but I still recognize who Sally is and I know she's my neighbor and my friend. And it clicks in my mind a little later on, oh, yeah, Sally, and I feel kinda silly or embarrassed. That's normal. But when I no longer recognize who Sally is and what relationship she has to me, that's when there's signs that it's a problem.
- Those are some excellent tips already out of the gate, Susan. This is why you're the best and it's why you draw a crowd. When people have an interest in dementia and trying to understand it, you do a really nice job and just helping us understand it from a perspective that I think we can all relate to. So thank you so much for that. Let me ask you this, do you recommend maybe at a certain age where people perhaps should be testing for this during their yearly checkup? And what is the process used in making a diagnosis of dementia?
- Well, everybody is different and family history can contribute to it, but also there are many people that maybe not have a family history or the knowledge of family history. So getting checked out can actually help someone living with dementia. And it also may not be dementia. If you think that you're becoming forgetful and can't remember things or can't recall things, that's a good reason to just go get checked out and tell the physician that's what's going on. You'll need a good neurologist to actually get the diagnosis. But it's finding the right neurologist that understands aging and the dementia process. Over the last years, we have come a long way with understanding dementia, but there is still that stigma that's attached to it that people don't want that diagnosis. And even the medical field doesn't wanna recognize it. So if you feel you or your loved one is showing some signs of things, maybe my judgment isn't quite right and seeing those changes, find out now because knowledge allows you to function better when you know what's going on.
- Yeah, we're gonna talk about that here in a minute too. First, I'm really curious because you do the training obviously for the staff members at The Arbor Company, what is something that people don't know about dementia and they go through your training and they're surprised to learn this? What would this be?
- I think one of the biggest surprises is how it affects somebody's field of vision. Even with normal aging, you start to have a narrow field of comprehending. It's not that you can't still see things outside this narrow field, but you just don't comprehend it because the brain slows down. That happens even with normal aging. But as it progresses, that field of vision gets narrower and narrower. This way, I might not see things because they're not in my vision. I might not think there's any toothpaste in the bathroom because I've got this narrow field of vision. And then I get frustrated because I can't find things when they're right there in front of me, or family members become frustrated because it's like, it's right there. That's a sign to watch for. And I find that people are always surprised by that. And then eventually, lose depth perception is also something that happens. So vision is a large part of someone's environment to keep them safe. But being aware of that can help you adjust an environment to keep somebody living with dementia safe.
- Yeah, that's a really good tip. And you're right, I don't think a lot of people know that or they even understand the connection that our sight has with this. Great example there. Now, if somebody is watching and they think they might have dementia or they think somebody in their family or a loved one has dementia, what are some of the first steps they should take?
- Well, for a loved one, you do wanna get them checked out, see a physician, see a neurologist and get those diagnosis, because every dementia is a little different, but actually having someone know they have dementia is actually a gift for that person. We have that tendency to try to protect them from it. But I become afraid when I can't remember things and can't do things. And in the early stages, I'm very aware of it, but I will try to hide things and be deceptive. And they can be very deceptive because I'm trying to not let you see what's going on, but it's very important that they feel comfortable enough around you to be themselves. Those are those walls that come up and make it that much harder for that communication. And also many times, people get accused of stealing things. You've stolen my money, you've stolen my glasses, and different things. In the beginning stages of dementia, you go in and out and you have moments of complete clarity where everything is perfectly fine. But in those moments where you weren't clear, you may have done some strange things. Like maybe you put your shoes in the refrigerator. Well, if I open my refrigerator door and there's a pair of shoes in there, I'm gonna panic because somebody came in my house 'cause I would never put my shoes in the refrigerator. But if I know I have that diagnosis, I'm gonna know it was in that period when I was confused that that probably happened. And therefore I feel that much safer. And when you feel safe, you're calmer.
- Great examples there. Finally, and this kind of goes back to what you said earlier about the future, right? You're planning for the future. I mean, listen, people who have been diagnosed with dementia, they're living sometimes 10 years, 15 years. I mean, even people who have lived up to 20 years with a dementia diagnosis. What can someone do to help their loved one when they receive that diagnosis to prepare them for the next steps in the future? What do those steps need to look like as that person may decline over the years?
- Well, one of the biggest things you can do is start to have a conversation with somebody in the early stages, find out what's important to them. Setting up environments so that they can be successful. A smaller environment is actually easier for someone with dementia to function in. Lots of times, people are in a house that they brought their family up in and there's all these rooms and that can be very confusing and overwhelming. So actually, that smaller environment is something you can look at. That can be very helpful. That's why sometimes people living in assisted living actually function better because they have a smaller, controlled environment, can be very helpful for them. And learning the steps, understanding the old stories. And there's just kinda some tips that I have is always agree with the person living with dementia, never argue. One of the things that's happened is the frontotemporal lobe is affected, which they no longer have the ability to reason things out. And arguments usually start when people are trying to take two sides of a story and getting the other person to understand. They no longer have the ability to change their opinion. They need to be right. Divert conversations, validate what I'm saying, and then try to go to something else. Again, not arguing with me. Distract and never shame someone. It's, "Why did you do that?" Well, they did it because they're living with dementia, not because they want to. And if in the moment of clarity pointing out my errors doesn't stop me from doing it, because if all we had to do was tell somebody not to do it anymore, then we wouldn't have dementia. I don't have that ability to go through those things. Reminisce, talk about things from the past. And a big tip is it doesn't matter whether their stories are factual or not because it's not about the facts, it's about the feelings. First of all, if we're all honest with ourselves, our stories through our lives as we age get embellished, that's just normal. So I'm telling you my embellished feelings of an event and I'm not talking about the facts, I'm talking about the feelings, because I'm losing my facts, but I keep my emotions and feelings. And "Already told you that" is another big one. "Why do you keep asking?" People ask multiple questions because they have either an emotional or a physical need. If I keep asking what time lunch is, I'm probably hungry. If someone is at home and they keep asking, "I wanna go home, I wanna go home," maybe I need a hug or maybe I'm missing a loved one, or maybe I'm hungry. I mean, what do we go home for? Emotional and physical needs to be met. So instead of saying, "Well, you are home," maybe just give me a hug. You're missing home, aren't you? Validate where I am, don't correct me. And ask them to do things, don't demand them. If you have a hard time getting me to eat something, would you like a bologna sandwich now or a little later? And if it's a little later, then you can bring it a little later. And a little later with dementia can be a few minutes for some people. Encourage and don't condescend. Remind me I'm doing a good job. If my clothes don't match, don't point it out. Does it matter? Maybe it was a good thing that I got up and still put my own clothes on. Look for the positives in something instead of the negatives. I may brush the front of my hair, but not the back. You don't need to fix it, it doesn't really matter. And never force them to do something. Always stop, reassure, and reapproach. Because when you force it, that's when that... We call it anger, but anger is usually fear with people living with dementia because I feel out of control. I don't understand why I'm out of control, but I have the feelings of being out of control. And one of the gifts you can always give somebody living with dementia is whenever you leave, leave on a positive note. I love you so much. I had such a great time visiting with you. When can I come back, or can I come back soon? So that you've given them control. Control is what they're struggling for and recognition, because I'm still a person with feelings and emotions.
- A lot of the things you said I think are going to help smooth over and help out a lot of people who may have a loved one dealing with this right now, Susan, and they just feel like, why is this person angry with me all the time? Well, they may not be angry, as you said, it's control. There are some things that they are needing that we just don't understand. But through your tips, we understand it a little bit better. And that's why we always, always love having you on these to share your knowledge with us. And for that, we appreciate you taking the time to do this, Susan. Thank you.
- Thank you.
- Thank you. And if you want to hear Susan, she was a part of one of our really popular webinars couple months ago. You can log on to www.seniorlivinglive.com right now and catch our dementia webinar with Susan Robbins. And it was about an hour and a half. We had many people asking questions, questions that you may have, and you can get the answers to those questions right now, again, at www.seniorlivinglive.com. As always, we appreciate you watching. Have a great day, everybody.