Show Notes
Join me in welcoming Rebecca Langbein as a new collaborator with our Good Fit Poor Fit podcast! She joined us in this episode and will be assisting with more in the future. Learn more about her background in this TEDx talk.
Here’s additional information about Skills2Care and the PEO Model.
Examples of elaborate door disguises that are helpful options for individuals with dementia to keep them in a safe environment.
We talked about a few safety products for the stove:
Transcript
[00:00:27] Sarah: Hello all! Welcome to episode number 26. This is going to be a really fun episode today because I get the pleasure of introducing you to Rebecca Langbein. She recently joined our team to help contribute her ideas to some of our design work and has graciously agreed to help participate in creating content for the Good Fit Poor Fit podcast as well. I really miss having a cohost and a collaborator in this effort. So I’m really excited to have her join and share her unique perspective.
[00:00:59] So first off, let me share a little bit about Rebecca. She lives outside of Philadelphia, Pennsylvania, and is an engineer turned occupational therapist. She has a BS in integrated engineering and psychology and recently graduated as a doctor of occupational therapy. Bringing in the perspective of engineering and healthcare, she helps bridge a functional gap between products and people by consulting with a variety of organizations to help create products and environments that are equitably accessible for all people.
[00:01:33] Rebecca had the privilege of sharing her vision about occupational therapy and human-centered design as a TEDx speaker. And she continues to participate and advocate for interdisciplinary collaboration. I’ll post the link to her TEDx talk in the show notes. It’s excellent. So you should really take a look at that.
[00:01:53] So, for Rebecca’s first episode with us I thought it might be neat to hear about some of the research she did to finish up her OT degree, which she discusses the design of spaces for people with dementia. I think that a lot of times it’s easy to think about physical access for individuals that use mobility devices, and sometimes other impairments and disabilities may not get the focus.
[00:02:17] So this is definitely helpful information to discuss. She also put a big emphasis on caregivers in her work as well, which is very important too. I’m going to pass it off to her for a little intro and have her tell you about what she’s learned in her experience.
[00:02:34] Rebecca: Thanks. Hi everyone. It’s a pleasure to be here and I’m so grateful for the opportunity to add my voice to these conversations about people, environments, and design. I’ve always been fascinated by the ways that people interact with their spaces and technologies and how this really impacts their day-to-day lives.
[00:02:52] As an engineer turned occupational therapist, I’m particularly curious about how we can better design spaces and objects for all people by including diverse voices in the design process. As Sarah mentioned, I just completed my doctorate degree in occupational therapy this spring, after participating in what the OT world calls a capstone experience.
[00:03:14] So essentially when pursuing a doctorate of occupational therapy, students spend the first two years developing the foundational occupational therapy skills and knowledge base. But then in their final year, they have the chance to develop professional skills to become advocates and leaders in the OT profession, through innovative practice opportunities.
[00:03:35] So for me, this meant working with two community-based organizations that provide care to individuals with intellectual disabilities and dementia. Before I talk more about this, though, I want to share some facts about dementia that really put into perspective the importance of a conversation like this, talking about designing for dementia.
[00:03:55] First off, even though many people use the terms dementia and Alzheimer’s interchangeably, the fact is they’re not the same. The word dementia refers to a set of symptoms that include things like memory loss and difficulty with problem-solving. Alzheimer’s disease is the most common cause of dementia, but it isn’t the only one.
[00:04:17] Though dementia, mostly affects older adults, it’s not a normal sign of aging. That being said, around the world over 50 million people have dementia and it’s one of the most significant causes of disability, according to the World Health Organization. Now, before we get into the meat of this conversation, I also want to mention one more fact about dementia.
[00:04:39] Over 60% of people who are diagnosed with dementia live in the community, in their homes or with their families. So if we pause to think about that, we realized that that means most people with dementia are not living in residential care facilities. They’re living in homes, just like ours, Sarah.
[00:04:58] Sarah: Yes, they are. And I’m really glad that you brought up that statistic. I know many families want to keep their loved ones at home as long as they can. And they’re really struggling with how to do that safely. I know my parents tried to do that with my grandparents as long as they could. Whether it was maybe taking on more responsibility themselves or hiring others.
[00:05:19] As many of our listeners know, with the way our current housing stock is designed, there aren’t a lot of great options for people to live, who have a disability. But a decline in memory as part of that equation isn’t often addressed. And I’m really excited to explore some of these design options today.
[00:05:38] There is a big movement to help people age in place in their homes. So I think it’s an important topic for people to understand. And when considering the design of a home, that they also need to include multiple types of impairments as well, because that will happen when we all age.
[00:05:54] Rebecca: Yes, exactly. So now that we’ve set the backdrop for this conversation about designing for dementia, I’ll speak a little bit more about the work I did during my capstone experience.
[00:06:06] As I mentioned, the real focus of my work last year was actually with caregivers. I worked with people who are caring for individuals with dementia to address challenges that arose during caregiving. And to do so I was trained to use an approach called Skills2Care. This approach involves working with caregivers to examine the interaction of the caregiver, the person with dementia, and the environment.
[00:06:29] So we view these three things as pieces of a system that all overlap and feed off of one another. Therefore, by modifying one of these — the caregiver’s actions, the person with dementia, or the environment — the whole situation can change and challenges can be remediated.
[00:06:48] Sarah: This reminds me so much of the PEO model that we use with our organization and how we look at the person, the environment, and the occupations that people are doing.
[00:06:59] If one of these areas isn’t being considered, the design will not be a great fit. I love this concept of Skills2Care. So, is this approach something that you can be certified to practice in or is it just a way of approaching treatment with caregivers and their family members?
[00:07:16] Rebecca: First of all, Sarah, that’s a great comparison between the Skills2Care model and PEO. I always thought about that when I was working with my clients because the goal in both of these situations is to set up the three parts of the system so that they work together and create that good fit for the person to do what they want and need to.
[00:07:36] And to answer your other question, yes. Occupational therapists can become certified in Skills2Care by participating in a training program through Thomas Jefferson University, which I did as part of my doctoral capstone experience.
[00:07:49] Sarah: That’s great. So can you tell me a little bit about what you learned through your capstone?
[00:07:55] Rebecca: Sure. So one of the most noteworthy things I learned through this work was the profound impact that the environment can have on a person with dementia.
[00:08:04] Honestly, I was shocked to find out how much people with dementia were affected by their environments and further, how altering that environment could make it so much easier for both the person with dementia and the caregiver to function. So in working with caregivers, we would often discover that the environment was the most effective aspect of that three-part system to change.
[00:08:27] I learned that there are many aspects of environments that can be incredibly unsettling and triggering for people with dementia. But once you’re cued into these potential triggers in the environment, it can be really easy to make changes that will help the person with dementia function better. So, let me tell you some examples of that.
[00:08:47] The first one that comes to mind is cluttered spaces. So cluttered spaces can be incredibly overwhelming, especially for people with dementia. Caregivers are often confused as to why their loved one or their patient has trouble helping to cook dinner or work on hobbies like scrapbooking as they used to.
[00:09:08] And when I would ask the caregivers to show me the spaces where people were doing these things, it was pretty easy to see why they might be having trouble. With materials, strewn everywhere, and countless tools laying on top of one another, the person with dementia would have no idea where to begin. The environment was often too complicated and they wouldn’t know how to engage in the activity that they were there to do.
[00:09:32] But, by simplifying the workspace and only laying out the items that the person with dementia needed, caregivers would often be thrilled to see that their patient or loved one was able to participate in this once challenging activity. And honestly, if we think about this, it’s really logical. I don’t know about you, Sarah, but I cannot sit down to work at a cluttered desk.
[00:09:56] Sarah: Oh, definitely. I’m the same way. You can often find me cleaning up my desk before I can work. Or it’s the same with our kitchen, for example. I can’t even think about preparing a meal until I have counter space to do so. I tend to get really frustrated when there isn’t a place to put things, especially with the simplest of recipes. I end up losing my measuring cups and then realize that they’re in the dirty dishwasher and have to get them out and clean them. I know it’s frustrating for me to complete that task, but I can see where that would be almost impossible for someone with dementia.
[00:10:31] Rebecca: Yeah, exactly. And I’m actually glad that you mentioned that, cause it’s really common for people with dementia to have trouble when they’re looking for items, like you said, especially in the kitchen or bathroom.
[00:10:42]And that’s another thing that many caregivers were able to address by simply labeling cabinets. It was pretty shocking to see how far a few signs with clip art images could go in making the person with dementia, more engaged in simple tasks, like putting away groceries or washing up before bed.
[00:11:00] Sarah: That makes so much sense. I’ve also seen this with kids. I was reading an article the other day about kids not knowing how to clean up and organize because they didn’t know where things were supposed to go. One of the solutions that they mentioned was to label drawers or put simple pictures on them for the kids to know exactly where their socks went or where to put their Legos when it was time to clean up and go to bed. It seems like this would be a helpful solution for a lot of different ages.
[00:11:29] Rebecca: So true. This was another designing for dementia hack that really ended up helping everyone like you said. Honestly, even the caregivers were having an easier time finding things around the house. And I found this was particularly useful and bathrooms. Which reminds me of another interesting designing for dementia tip.
[00:11:48] So let’s think about our bathrooms. What’s something that’s in pretty much every bathroom?
[00:11:54] Sarah: Well, hopefully, a sink and a toilet. But I’m guessing you’re going for something different here. What about a mirror?
[00:12:02] Rebecca: Yep. Exactly. A mirror. So to you and me, this is great because having a mirror in the bathroom helps us make sure we don’t walk out of the house with toothpaste on our shirt or our hair flying everywhere. But for people with dementia mirrors can be really discombobulating. It’s often the case that people with dementia look in the mirror and are not able to recognize themselves. So I had a lot of caregivers tell me that their loved one or their patient would look in the mirror and become terrified, even sometimes yelling things like, “there’s a stranger in my house” or, “there’s someone in my bathroom”. And sometimes it would get to the point where they would stop going in rooms with mirrors altogether because it was so frightening. So as you can imagine, this was extremely distressing for that person with dementia and the caregiver.
[00:12:52] But this was where a simple environmental change could make all the difference. When caregivers removed mirrors from spaces like bathrooms and bedrooms, the people with dementia were no longer afraid and were able to participate in those spaces again. And a similarly stressful challenge that many caregivers face occurs at a different spot of the home, not in the bathroom. Any guesses?
[00:13:16] Sarah: Let’s see, there’s a lot of places within the home I could guess, but maybe something to do with like a door to go inside or outside?
[00:13:25] Rebecca: Yup. Exactly. You’ve hit the nail on the head. That’s another trouble spot, I would say often when providing care for people with dementia . Entryways to homes where people with dementia live can present challenges for a few reasons.
[00:13:40] First of all, it’s really common for us to place doormats in entryways, right? I mean, I can’t think of a doorway in my house that actually does not have one.
[00:13:50] But, not only can these be a tripping hazard for everyone, but also they can be really frightening for a person with dementia. I saw people who would literally walk up to the doorway and freeze, like a statue in front of a doormat. Caregivers would be completely perplexed and frustrated and irritated — “why will they not walk out this door?”
[00:14:12] Sarah: Hmm…
[00:14:13] Rebecca: But in reality, people with dementia perceive the world really differently than you or I do, Sarah. So to us, it’s just a doormat. Somewhere we can wipe our feet or even just a nice decorative piece. But to many people with dementia, doormats can appear to be large gaping holes in the floor. So when we put ourselves in their shoes, no wonder they don’t want to walk over them.
[00:14:37] But when caregivers were empowered with this knowledge and were able to remove doormats, they often found it way easier to leave the house and be on their way. Making that transition through the doorway clear and open was a dementia design that made all the difference.
[00:14:54] And there are other entryway challenges as well. One of which that I saw a lot was when caregivers would say that their loved one or their clients were trying to leave the house alone and unaccompanied sometimes even in the middle of the night. And this was really anxiety-producing because that’s such a safety concern.
[00:15:15] Sarah: Oh, definitely. Yes. I have a friend who said that they had to get on an alarm for her father when he began wandering out of the house. And they were really worried that he would get lost or hurt and he was developing Alzheimer’s. And it was a really scary for them.
[00:15:32] Rebecca: Yeah, that’s so common. I know some people who have experienced that challenge as well. But one of the most salient things that I learned about the way that dementia affects the brain is this: if it doesn’t look like a door, it’s not a door. And this statement can generalize to other objects as well.
[00:15:52] So for people with dementia, if an object doesn’t visually reflect its use, it’s often the case that that person will not see it as that object.
[00:16:03] So what I really mean is, if a door doesn’t have a handle, or a stove doesn’t have a knob, a person with dementia will likely not see that object as a door or as a stove. So many caregivers got creative and modified their spaces by disguising doors using craft paper, covering doorknobs, or even buying really beautiful and elaborate door disguises, which I’ll actually link in the episode notes if you want to check them out.
[00:16:31] This way, the person with dementia didn’t view that object as a door and they no longer attempted to leave the house. And this idea of an object not being what it appears to be, also came in handy for many caregivers who were concerned about their loved one or patient turning on stovetop burners. Covering the knobs, or even disguising the stovetop with a vase or books when it wasn’t in use kept the person with dementia from turning on the stove and potentially forgetting to turn it off.
[00:17:01] Sarah: These ideas are so smart and simple, but not something we often think about. The stove was a big safety hazard for my grandmother as she started it exhibiting signs of memory loss.
[00:17:12] I told my dad about different products on the market that I had found. One is from a company called CookStop. This product could be installed to monitor the stove. A stove-monitoring device will turn off the stove if it’s left unattended for a certain amount of time. It also tracks movement. So if there isn’t any movement near the stove for like five minutes, it will shut off the stove.
[00:17:37] Or there’s another product by this company called Fire Stop that can be installed under the range hood that actually dispenses chemicals to put out a fire on the stovetop when the flames or the heat reach up high enough. This concept, like you described, an object not being what it appears to be, can help stop a fire before it even starts by disguising the stovetop by making it look like something else. It’s definitely smart. And I think both of these concepts could probably be used for people with dementia.
[00:18:08] Rebecca: Absolutely. I think there’s a place for both of these kinds of innovations in the home. And honestly, I did not even know something like that existed, but I kind of feel like that should be built into all homes because everyone forgets to turn off the stove sometimes.
[00:18:23] Sarah: Yeah, I agree.
[00:18:26] Rebecca: But yeah, simple shifts like this, disguising the stove, demonstrate how setting up the environment in a specific way can prevent safety issues and promote participation and wellbeing for people with dementia and their caregivers.
[00:18:40] But we also know that this idea goes far beyond dementia. Setting up and designing environments simply and thoughtfully make it easier for everyone to function and thrive in their homes.
[00:18:52] And this doesn’t just have to be in the form of modifications after someone has developed a health condition. There are tons of features that can be planned for and included in homes from the outset that would be functional, whether there’s a person with dementia living there or not. Which in this day and age, when people are living so much longer and preferring to stay in their homes for the duration of their lives, this seems especially important.
[00:19:16] And in general, just simplifying spaces is incredibly useful for everyone. As we said, no one wants to work at a cluttered desk. Building in enough storage space in places like kitchens and bathrooms can prevent spaces from getting cluttered in the first place. And on a similar note, creating spaces that are specific and logical for items like, keys by the door, can make sure that you never forget your keys on the way out. And your loved one with dementia can come visit and know where to look for their wallet when they leave.
[00:19:49] Sarah: Yes, this all makes so much sense. A place for everything. I personally love organization. So I really agree with that.
[00:19:56] Rebecca: Yup.
[00:19:57] Sarah: I also think an open concept layout makes a big difference too as someone with dementia is able to see more areas of the home, which means there’s good sightlines and not have to search to find them. Design should have a logical layout. Maybe having the dining room next to the kitchen. And light placement is also really helpful inside as well as lots of natural light.
[00:20:21] Rebecca: Definitely. I think that on the topic of lights, designing to prevent glare in hallways and create seamless transitions between rooms and thresholds is another thing that benefits everyone, not just those with dementia.
[00:20:35] Sarah: Exactly. Contrasting colors between the walls and the floor, as well as transitions from one part of the room to another, with color on the floor is helpful.
[00:20:44] However, I will caution that too much of a contrast from one space to another could make it look too much like a step to other people, just like you were talking about earlier about the doormat. So a drastic color contrast, like from white to black is not advisable. But some contrast is definitely helpful.
[00:21:04] I also want to mention that shiny surfaces and finishes on floors and counters can cause glare and can be really deceiving for people who struggle with vision or cognition. My mom has struggled with double vision in the past and many times she has seen a glossy finish on the floor and thought it was wet. And she had a big fear of actually slipping. I’ve even seen this happen with carpet patterns that are too busy.
[00:21:31] I heard a story of an independent living facility that installed a patterned carpet on one of their new buildings, but the residents struggled walking on it because it made them feel like they were moving cause their eyes were playing tricks with them as they walked down the halls.
[00:21:48] Rebecca: Oh boy. Yeah. That patterned carpet sounds less than ideal. I think I might get nauseous from walking on something like that. So that’s definitely something to be aware of.
[00:21:59] So Sarah, before we wrap up, do you want to know my personal favorite dementia-friendly design that I implemented in my apartment?
[00:22:06] Sarah: Of course.
[00:22:08] Rebecca: A whiteboard in my kitchen! I would use it to write groceries and weekly menus, but I also knew that if I ever needed to, I could use it as a very prominent place to leave a reminder. If I were living with a loved one who has dementia or honestly if there was something that I really just thought I was going to forget.
[00:22:28] Sarah: That’s a really great idea. I think I probably should do that in our house too. This concept actually reminds me of something a friend of mine did with her father. Here’s a direct quote:
[00:22:39] “Sometimes people [with dementia] get stuck back in time. So they are frightened or confused by the current age of their sons, daughters, wives, or husbands. If you have a bulletin board with pictures and progression of each important person, it can help. So the father says, ‘You aren’t my daughter, you’re lying. She is a sweet little thing.’ You can go over to the bulletin board and say, ‘is this your daughter? When she was little? Oh, look, this must be her in high school. And look at her on her wedding day’, et cetera.
[00:23:11] She said that this helps the person gently come to the present and recognize you at your current age. So I could see where this whiteboard idea and this memory board idea could really be used hand-in-hand.
[00:23:24] Rebecca: Wow, yes! Yes! I love that idea. And actually, saw similar things in many homes where I worked last year. Some people even had these memory boards for the individuals themselves walking through their growing up and their lives.
[00:23:39] One more thing before we finish up. What’s one thing that you have in your home that you like now, but might also be useful down the road?
[00:23:48] Sarah: So, one thing that I’m thinking of is my husband is a big technology buff and he really loves trying out different types of smart home technology. And it’s really interesting what people are coming out with to control different parts of the home from lights, to playing music and even controlling the temperature.
[00:24:06] So right now, we are able to keep our daughter contained in our home, but I could see using some type of alarm or technology that alerts us if she happens to open the door, which is what we kind of talked about earlier.
[00:24:20] And I also wanted to add that I do know that there are many people my parent’s age, maybe in their sixties that are trying to figure out how to care for their parents who are in their eighties when maybe they’re still living on their own.
[00:24:32] Now, every family is different. And I think based on the stage their family member is in with dementia or another cognitive impairment, that creates difficulty, there are different solutions that could be used.
[00:24:44] So there are products out there that do help with medication management, help dispense medications at appropriate times. This could be helpful in specific situations again, but not all.
[00:24:55] I have another friend who shared that her family had to actually a lock up their medications versus hiding them because her father, who had Alzheimer’s actually found and took her mother’s sleeping pills and took two days worth.
[00:25:09] Yikes.
[00:25:09] He passed out. Yeah, it was really scary. He actually passed out at the breakfast table and they couldn’t rouse him. They thought he was having a stroke and they had to call the rescue squad and he was eventually taken to the hospital. Now, my friend’s mom realized the next morning, when she went home, what happened –that he had actually taken her sleeping pills — but they had a really hard time convincing the doctors of this. So it seemed like a pretty big ordeal. So locking up medications was a big solution for them.
[00:25:43] Rebecca: Oh my goodness. Yes. That must’ve been incredibly scary for your friend. And fortunately, in this case, everyone was okay, but that certainly does offer insight into the importance of safely setting up a home when caring for loved ones, especially when it comes to medications.
[00:25:58] Sarah: Definitely. And then there are also other products out there with sensors and monitoring systems that can be set up around the home to detect movement. So instead of having a camera set up in the home to watch your family member’s every move, which, you know, people often get weirded out by cameras, you can set up sensors in areas around the home where your family member frequents. So maybe by the refrigerator or where they would take their medications in the morning or by the front door.
[00:26:27] So, if movement isn’t detected when it normally would be, then a caregiver can be alerted that they may need to check on their family member because they haven’t gotten a notification on their device.
[00:26:40] Rebecca: That certainly sounds useful as well. Though, I know many people, as you alluded to, have reservations about technology and even privacy concerns when it comes, especially to stuff like that.
[00:26:51] Sarah: Oh, definitely. I think there’s a time and a place for technology to be used, but if it’s simple and able to be understood well by those utilizing it, I can see where it would definitely help in keeping people safe at home when memory loss is part of the equation.
[00:27:06] Rebecca: Absolutely. I agree. And, even as an engineer, I recognize that technology isn’t always the solution. But there are many cases in which it does help a great deal. And it really just is a question of finding the best fit for each family and each situation.
[00:27:22] Sarah: Definitely, yeah, it has to be different for every family. So before we finish up, I also want to touch on the fact that with dementia, families also have to get really creative in their daily interactions with each other in how they approach different situations with their loved one who is exhibiting a decline in their memory.
[00:27:41] Design and technology, like we’ve talked about, definitely make a big difference, but knowledge on how to help family members feel safe through actions and conversations is important too. That was also one of these areas in the Skills2Care certification that you mentioned above.
[00:27:57] Rebecca: Mmhmm.
[00:27:57] Sarah: Even though we didn’t dig them here, as we were working on this episode, I asked a friend whose father recently passed away due to Alzheimer’s to share some things they did with him around the home. In addition to some of the safety design things we discussed before she graciously shared these experiences as well:
[00:28:17] So these are her quotes:
“We took essential things out of daddy’s wallet, but always made sure he had five to ten dollars in there because it made him feel safe to know he had a little money and when people took him out, he felt good to help pay for things.”
[00:28:34] Now, I thought this was really helpful to give him a sense of independence and to help him in participating in tasks that may seem normal to him like, paying for a meal.
[00:28:44] Another thing my friend said was,
“Don’t try to constantly correct the person, just enter into their reality. The relationship is more important than having them get all the facts straight.”
[00:28:55] Rebecca: Mmhmm.
[00:28:55]Sarah:
“If they can’t remember a word, don’t just automatically fill it in. They start to feel stupid and out of control. For instance, if they’re trying to remember the word refrigerator — ‘oh, you’re talking about the thing where you keep cold food? Is it a freezer? Hmm. No, not quite. Oh, you must mean the re… refridge… things like that. ‘”
[00:29:21] Rebecca: I’m so glad you’re bringing this up, Sarah, because your last point is one of the most noteworthy things I learned about caring for people with dementia. Don’t argue or correct. Your friend’s notion of entering into that person’s reality is something that I worked on with caregivers all the time. It goes back to that system of three — the caregiver, the person with dementia and the environment.
[00:29:47] One way to alter that system is for the caregiver to modify his, her, or their communication strategy. And this often just looked like what your friend was describing, entering into that other reality, and being there with that person.
[00:30:03] Sarah: I think that these tips are just as important as design and keeping the environment safe. Each person and family situation is so different. And I love hearing how a variety of approaches can help family members who are caring for their loved ones at home. And as you shared earlier Rebecca, there is a lot.
[00:30:19] Rebecca: Mmhmm.
[00:30:20] Sarah: So as we wrap this up, I know that there are other items we didn’t address in this episode, but we’d love to hear about what other people have done in their homes to help their family members with dementia. I’m always excited to learn more because most often the solution benefits others as well. I will also say that I have seen where memory care units are being designed with a lot of thought and consideration with some of the design elements we discussed today. And I can definitely see some overlap for what can be done in residential homes too.
[00:30:50] I hope you all enjoyed this episode. It really helps me continue to think outside the box in creating a good fit for people in their homes. I really appreciate you sharing some of the things you learned in your last year of OT school as well, Rebecca, in regard for designing for dementia.
[00:31:06] Rebecca: Thanks for having me. It was a pleasure.
[00:31:08] Sarah: Yes, of course. And I’m so glad you’re going to be joining us for more episodes in the future. Have a great day.
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