How To Know What It Feels Like To Live With Dementia: Resources For Caregivers
Ever wonder what it truly feels like for your loved one living with dementia?
In this episode, we explore the sensory and cognitive challenges they face daily through an eye-opening dementia simulation experience.
By understanding these challenges, caregivers can adapt communication strategies to better support their loved ones.
Experiencing Dementia: A Firsthand Simulation
At the Midwest Dementia Summit, caregivers were given an opportunity to simulate the sensory changes common in dementia, thanks to the company Educate.
Through this experience, participants wore equipment that simulated tunnel vision, reduced tactile sensation, and auditory overload.
This allowed caregivers to feel what it’s like to have diminished sensory processing, helping them empathize with how disorienting and frustrating simple tasks can become.
Participants received a list of instructions they had to follow while experiencing these sensory limitations.
With only tunnel vision, muffled hearing due to noise, and clumsy gloves restricting their hand movements, even simple tasks felt overwhelming.
This firsthand experience revealed how sensory impairments make focus and task completion difficult, leading to feelings of inadequacy, confusion, and frustration.
Key Takeaways for Caregivers: Practical Communication Tips
1) Face-to-Face Communication
Dementia often narrows vision to the center, limiting peripheral sight. When communicating, face your loved one directly so they can clearly see you and focus on your facial expressions.
2) Minimize Background Noise
For individuals with dementia, background noises are difficult to filter out, making it hard to focus on conversations. Turn off the TV, lower the volume, or move to a quieter space when talking to them. This small change can significantly improve their comprehension and comfort.
3) Use Simple, Clear Instructions
The simulation demonstrated that instructions are challenging to follow when they come all at once. Provide instructions one step at a time, speaking slowly and pausing to ensure understanding. This approach helps avoid overwhelming your loved one.
4) Be Patient and Adapt to Their Needs
Caregiving often requires extra time for even simple interactions. By slowing down, facing your loved one, and limiting sensory distractions, you’ll find communication becomes smoother, reducing frustration for both of you.
A Call to Empathize and Adapt
Living with dementia involves constant changes in sensory perception. As caregivers, adapting communication methods to address these changes makes the journey less stressful and more fulfilling.
Imagine trying to navigate life with limited sight, muffled hearing, and reduced sensation—and let this empathy guide how you connect with your loved one.
Are you ready to transform your caregiving approach? Consider these tips to make each interaction meaningful and respectful, helping you bridge the gap and support your loved one with compassion.
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Transcript
[0:00] Hey Christian caregiver, welcome back to Dementia Caregiver Support for Christians, the podcast where I teach Bible-believing Christians how to make dementia caregiving
Welcome to Dementia Caregiver Support
[0:12] easier today while helping you focus on a brighter tomorrow. I had a very wonderful experience last week to be in Indiana where I was a presenter at a dementia summit called Midwest Dementia Summit 2024. And it was a unique experience because they had a lot of different types of vendors that I have always wanted to meet at this particular summit. And one of the vendors at this particular summit is a company called Educate. And the reason they are so interesting to me is because I have always wondered what it might feel like to live with dementia.
[1:01] And they have a way of simulating a dementia experience for you as a person who is not perhaps living with cognitive loss or dementia, so that you could feel what it may feel like based on what we know a person is experiencing as they’re journeying through their dementia journey. So I thought it would be fun today to just give you a quick little editorial of what it felt like to me to experience this simulated dementia experience. So like I said, they use.
[1:45] Certain techniques and certain technology to help us feel what it actually feels like for somebody who is living with dementia. So I want you to picture this. I want you to picture a room where there are lots of different stations and there’s lots of things put out.
Experiencing Simulated Dementia
[2:03] It’s very busy. There’s some clothes. There’s some things on the table. There are people talking.
[2:10] There’s a lot of activity. And then you come into the room and they provide you with three different types of equipment. The first one is a pair of glasses that have tunnel vision, because one of the things that happen to a person living with dementia frequently is a change in their vision. As they start to have these actual physical changes to their brain, their vision field becomes narrower and narrower and narrower until at the later stages of dementia, you have what’s called tunnel vision. So I want you to think about putting a pair of binoculars up over your eyes. So take your fingers, make little circles and put them up over your eyes. And that is all that you can see. And the rest of the pair of glasses is blacked out so that you cannot see on the side. So you literally only can see what’s through this tunnel. The second adaptation that they make is you put on a pair of very thick gloves.
[3:19] These very, very thick construction gloves that you now have to help simulate what it feels like to have decreased sensation in our fingers. All of us use our fingers, it’s called stereognosis, to be able to identify what it is that we are holding in our hands. So for example, if you have your eyes closed and you put your hand in a drawer and you’d you feel around, you will be able to identify using your fingers what it is that you’re holding, whether it be picking up a pen, some coins.
[3:58] Whatever the item is, your stereognosis, the sensation in your fingers helps you to determine what that item is. So you put on a pair of gloves to take that sensation away. And then the last adaptation that they do is they give you a pair of headphones and inside the headphones, what you are hearing is a variety of different sounds all on top of one another.
[4:28] Part of the reason for that is you and I who are not experiencing or living with brain changes, we are able to filter out a lot of the background noise that we hear in the community, in the environment. As I’m sitting here recording this particular podcast today, my husband is in the kitchen and vaguely in the background, I can hear the radio that he is listening to or his podcast that he’s listening to. But for the most part, I’m able to tune that out. A person living with dementia loses the ability to tune out the background noise. So as I’m sitting there with the headphones on, on the inside of the headphones, you can hear a television and noise of traffic. And all of these are at different volume levels. So some of them are softer, some of them are louder, some of them are very annoying. And then some of them just all of a sudden, it starts to have this terrible alarm blaring in your head. So all of this is going on. So you put on these pieces of equipment. And then the person who is taking you through the activity, she comes and stands next to you and she reads you a list of seven or eight or nine or 10, I’m not entirely sure, instructions.
[5:55] And what was fascinating was almost immediately the thought that went through my head is, slow down, I can’t hear you, I can’t catch what you’re saying to me. And, you know, I’m trying my level best to pick out the instructions she just told me to complete. And she comes to the end of the list and I turned my head because she was standing next to me so I couldn’t see her. And I said to her, I said, I didn’t catch that. Can you tell me again? And she told me, no, she can only give me these instructions once. And immediately when she did that, my anxiety level went off the route because I’m like, I didn’t hear you. I couldn’t concentrate on what it was that you were telling me to do. And now you expect me to go into this area and be able to pick out and do a few of these tasks. So it was very, very, very overwhelming. So a few of the things that I actually remembered that she told me I needed to do was, um.
[7:03] There was a black shirt and I needed to button a couple of buttons. I remembered that there was a coin purse that had a whole bunch of different things in and not only just coins, there were little wooden blocks and then some coins and I had to count out 37 cents worth of change out of this coin purse. And then the last activity I could actually remember was I was supposed to feed the dog And I could see the dog’s bowl on the floor, but nowhere could I actually see or locate the food. And so I went through these three tasks and I could never get the buttons done. It was so frustrating to me. I just pretty much hung it back up again. I was able to slow down and take my time. and it took me a forever time to open the change purse and pull out the 37 cents worth of change and then put the rest of the stuff away.
[8:00] And then I saw the dog bowl, but I never saw the food and I’m looking around and I needed help from her to actually scan the environment and locate the food.
Emotional Reflections on the Experience
[8:10] And by the end of it, I’m just, I kind of, I threw my hands up in the air and I said, I give up. And I walked out and it was fascinating because immediately afterwards, I came up to me and she asked me and gave me a sheet of paper to ask me how I was feeling. And so some of the emotions that are identified on this sheet are angry, bored, determined, inadequate, lost, scared, terrified, annoyed, confused, foolish.
[8:43] Irritated, miserable, silly, worried, anxious, depressed, frustrated, lonely, overwhelmed, tense, or worthless. And she asked us to identify how we were feeling.
[8:58] And I told her that I felt happy. Lost and inadequate and overwhelmed. And so I thought it was a good experience for me to actually simulate this experience related to the only thing she changed. The only thing they change is the sensory input. And what I mean by that is I still had all of my cognitive abilities, but she took my sensory perceptions away. I couldn’t see, I couldn’t feel, and I couldn’t hear. So she just took those three things away and provided me with instructions. And so we have to consider that when we are helping somebody living with dementia, that they are changing, that their sensation is changing, their perception of the world is changing. And then not only are those physical things changing, but then on the inside, we have the actual changes in their brain. So I would encourage you, if you are helping somebody living with dementia, I want you to really think through today’s episode and just sit and reflect for a couple of minutes what you might feel like when you cannot hear.
[10:18] You know, you have a headphone on and there’s all sorts of auditory stimulus going in and you cannot actually hear the directions that a person is telling you. I’ll use my husband as an example. He’s pretty hard of hearing. And I really have to be sensitive now to if he is in the kitchen and the dishwasher is going or the washing machine and the podcast is going and I’m talking to
Strategies for Effective Communication
[10:44] him from the other side of the house, he cannot hear me. And so I have to change my habit in communicating with him, stop what I’m doing and actually going to him, standing where he can see me and hear me so that he can actually receive the information that I’m giving him. So as our people we are caring for are living with loss of hearing, loss of vision.
[11:10] Loss of sensation, these are things that we, in their environment, can help compensate for by changing how we interact with them. Come to the person. Do not expect that they can hear you and or understand you if you’re on the other side of the room or the other side of the house. We have a habit of doing that when we’re younger, communicating with one another from opposite sides of the house. What happens? Honey, will you do this and this and this? And the response is, aha.
[11:44] Which makes us then believe that this person has actually heard, processed, and taken in that information, that aha is probably just likely, oh, I hear you talking. It doesn’t mean that they’ve actually heard what you’re saying. So some easy strategies. Always communicate with the person living with dementia right there with them. Face them face to face so that they can see you. Understand that they are losing their peripheral vision and so they cannot see you from the side you need to be right in front of them when you communicate with them understand that their sensation in their hands are changing so their fingers are feeling clumsy and not able to do this the types of fine motor things that they’ve always been able to do and consider that they are unable to filter out the noise in the environment. So if the television is on, or there are other conversations.
[12:50] Or you’re in a restaurant, or you’re in a grocery store, all of that background noise that you are able to filter out, the person that you care for and that you love are not able to filter them out. And so it can be super overwhelming for them when all of this is occurring. So I want you to remember that when you’re communicating with them.
[13:15] Slow down, take your time, build in the time to communicate well. If you communicate better with the person living with dementia, your results will be easier. And you can learn to accommodate. Does this take a little more time? Absolutely. However, having said that, contending with the meltdown, working through the quote-unquote responsive behavior.
[13:43] Or quote unquote, the challenging behavior, because you did not communicate effectively with that person is actually going to take you more time.
[13:54] So I just wanted to share my firsthand experience of how I experienced the simulated how it feels to live with dementia through the company called Educate. And my goal is to have them as an interview on this podcast to talk about their story. But I just wanted to share with you today how it may feel for your loved one who is living with actual physical changes in their brain that are causing physical changes in their body that result in a
Joining the Community Support Sessions
[14:31] need for us as their family caregiver to communicate with them in a very different way. So I hope this short little episode was helpful to you to consider how you as a family caregiver can adapt and change your abilities to communicate with your loved one.
[14:51] If you haven’t yet joined me from one of our Ask the Dementia Coach monthly meetups, the next one is this coming Thursday, which should be tomorrow after this episode airs. You can sign up to join us where you can get individualized support in your dementia caregiving journey, as well as be a co-creator in this podcast where you are able to ask me questions. We can keep it entirely anonymous.
[15:26] You don’t have to have your camera on. We can change your name. My ask is that you come, that you register, and that you come to these sessions. They’re my gift back to you as my community so that we can actually help you with true boots on the ground, real-life situations, and problems that most people are experiencing. Because if you have that question, I can guarantee you somebody else has the same question. So sign up. It’s not too late. Sign up for tomorrow’s Ask the Dementia Coach monthly meetup, and I will see you in our next episode. And may the Lord bless you and keep you during this journey that we are on together.
