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Welcome to our second episode of Mavericks for Senior Living: Challenging The
Way We Age. We are two innovators and entrepreneurs who have huge hearts and passion for our older adults. And we see all kinds of opportunities to improve today’s system for how we age.

In this episode we talk about the stigma of dementia with co-podcaster, Francis LeGasse.  Francis shares the story of how came to co-own and operate a unique model of care with Assured Assisted Living, and the flourishing Sevens Home Care, as we discuss the stigma so many families and older adults carry with the term “dementia.”

“Those with dementia are still people and they still have stories and they still have character and they are all individuals and they are all unique. And they just need to be interacted with on a human level.” 

Carey Mulligan

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Below is a transcript of the episode, modified for your reading pleasure. For more information on the people and ideas in the episode, see the links at the bottom of this post.

Katherine:  Hi everybody and welcome to today’s podcast. Today I’m going to be interviewing our co-podcaster Francis LeGasse, CEO of Assured Assisted Living. So let’s kick it off. What is it that you want to challenge today, Francis?

Francis:  I want to peel back that stigma that we have about those living with dementia. We’re seeing more people with that diagnosis, yet we don’t always seem to be welcoming them into our worlds.

Katherine:  I have experienced with that with my mother who recently passed and so many people are dealing with it either in their own families or maybe their friends, families, people who are close to them. So I love that topic. Before you dive into that, tell us a little bit about who you are and your background and what brings you to this point where you want to challenge this.

Francis:  It all started with the desire to do something more. I have a physics degree and some health sciences, and I take an engineering kind of problem-solving approach. Looking at things outside the box. And it really started hitting me when I saw my grandparents’ age. That was really my first experience of seeing the aging process. Seeing my paternal grandfather get diagnosed with Parkinson’s and my maternal grandfather getting diagnosed with dementia, and just seeing how life changes when you get a diagnosis that you can’t cure. I think we’re really used to taking two pills for that cough. What do we do with people that can live a while, yet we can’t really cure what they have? I was mid-twenties when I was first exposed to that.

Katherine:  You raise a good point. We can’t fix this one. We’ll have a woman in a future podcast who talked about the idea of our life span versus our health span. Our life span is increasing as we all know at our health span is not increasing at the same rate. We’ve heard that if you live long enough, you’re likely going to have dementia. So what do we do with that? Your grandparents are the inspiration behind what you’re doing. Tell us more about what you’re doing.

Industry Caregiver to Resident Ratios

Francis:  We started non-medical companion care service back in 2009. We want to help people stay at home as long as possible. And hopefully bring services in. But obviously there might come a financial tipping point where spending $15,000 to $20,000 for 24/7 in-home care doesn’t work. So what’s next? That really got us into this idea of making a residential-feel to an assisted living. We started with a ranch style home that we could provide high level care for those living with dementia. That was really the first idea we had of taking our home care and putting it into a more group setting while focusing on that individual care. And that has done really well for us. We’re now up to 10 locations where we provide care for anywhere from eight to 12 residents with two to three direct care staff. So we have about a one to four, one to five ratio, which for me that makes me feel good because I feel we’re getting close to that one on one care.

We’re able to be more proactive in the care. And I think if we begin to look at how do you be proactive in what’s going getting ahead of some of the care needs, not being reactive, you need more oversight, more human oversight. I do think down the road we might be able to augment some predictive technologies, whether it’s AI or sensors to help, you know, even further be more predictive. But I still think you need that human element. So I definitely know that we’re on our staffing ratio of one to four in some of our locations is definitely the lowest I’ve heard of in Colorado. I know a lot of places are like one to 10, especially the bigger boxes. I feel we have to focus more on the care, not so much that big beautiful building. And don’t get me wrong, you need a nice place to live, but you need a high, high quality of care as you age and that’s what you deserve to.

Stigma and Unmet Needs

Katherine:  Really important point. When you think about the ratio that you have, how does that play into challenging the stigma around dementia?

Francis:  I think it helps because I think we’re able to divide and conquer when we have a resident that’s a little more challenging. We can actually have one caregiver spend more one on one time with them. And a lot of times they’re having a challenging situation because they have an unmet need. They might just need someone to talk to, to show compassion or empathy for them. They might need someone to go for a walk with them or have a cup of coffee together. They might need to have that sense where they have freedom with oversight from our staff and so that’s sometimes more one on one care. Our staff is trained to do these things.

Katherine:  Behavioral issues might be harder to catch. So the lower ratio allows you to work with them more one-on-one, which helps them not feel so different, not feel so lost perhaps. Is that what I’m hearing?

Francis:  Absolutely. They feel more of a person because their needs are being met and they’re able to express them. They’re not waiting to express that, you know, we’re able to see what they’re looking for or needing and wanting, and then we can actually engage with them at that time. They’re not having to push a call button in, wait 10 minutes or 15 or 20 or 30. They’re able to express that need very quickly and hopefully get a positive outcome in what they’re looking for. Because it could be as simple as, Hey, I can’t figure out where the coffee is and I just want more coffee. Or Hey, I want to go sit on the front porch. Can you point me to where it is? It could be something as simple as that and that’s all we’re meeting is just that simple need.

Katherine:  You said ‘unmet need,’ and I think that’s really important because so many behavioral issues from children through adolescence to to our older age, are rooted in an unmet need and sometimes we don’t know what our need is, so it’s hard for us to express it. If they’re not able to verbally express, for example, my mom was mute the last two years of her life. How do you manage that?

Francis:  I believe that we can try a few different ways. I want to obviously begin to know who they are as a person, right? That really helps – just knowing their background and then the next is how do we empower them to tell us in whatever way they can communicate. And so if they’re nonverbal, I think it’s really important to use flashcards. If they’re able to write maybe a simple note pad that you can write a question or ask a question to them and they can write the answer or a magnetic board that they can move an item over a yes or no. Or you know, you have five questions that are you hungry? Are you thirsty? Do you need to go to the bathroom? Are you in pain? And you can have a simple yes and no token that they can put over whatever side it is. So I’m really a big into empowering those that are living with dementia and not taking things away but substituting for them.

Katherine:  I wish I had known that with my mom. I would have put together a magnetic board in a heartbeat. I think that’s a brilliant way of managing that. It’s really great.

Francis:  And I think that’s going to be kind of like what you’re seeing with some of the adapt adaptions that we’ve made with, you know, we have the ADA now where you know, you have to have ramps and accessibility stuff. I think society, we need to start adapting a true dementia friendly environment. What does that really mean? And I think we have these suppose the dementia friendly cities, but I don’t think anybody truly knows what a dementia friendly city really is. Because to me dementia friendly would be, we could have someone with dementia walk freely out their front door and they would be safe. That to me is dementia friendly.

Katherine:  And how would you do that? What does it mean to you and how would you do that? Because this is part of removing the stigma too, right?

Francis:  That’s a tough question. And the reason I say that is because I’m thinking of spouses. You almost, and I don’t mean this in any negative, but you almost imprison the spouse that might be sound of mind and able to do things because they’re afraid to take out the other spouse that’s living with dementia. And I think that’s sad that all of a sudden we’ve broken this 40 or 50 year marriage that used to maybe go to dinner every Friday night and now the one spouse is afraid to do that because they’re worried if my husband just eats for 10 minutes and walks around in circles, are people gonna look at me like I’m weird. That’s what we have to break. And so to me it’s an acceptance of us as a society of being okay with some of the challenging situations or the ways that those living with dementia respond in certain situations. And I think it’s on, it’s an education piece of just those that don’t have dementia. I think it’s a huge education piece for first responders for medical providers.

For even a restaurant, two years restaurant tours your waitstaff especially, you know, to know that, you know, if they’re fiddling or they’re being really quiet and not making eye contact with you, might not be because they’re mad at you. It’s just they’re not comfortable in that environment

Katherine:  Or perhaps it’s part of their dementia. When you talk about the education, how do you educate the family on these things and help them feel okay about, it’s all right to go out and, and take your spouse out and if people look at you, how do you respond? What do you do? How do you manage that?

Francis:  That’s a fantastic question and I think it’s one that it’s, it’s tough to, and it’s easy I think or for us to answer because we’re seeing it more often. We’re used to working in it. I think what you have to do with the spouses and the families, especially maybe kids and grandkids, is bring the group together because the minute your loved ones diagnosed with dementia, you need a team around you. You can’t be by yourself. And if you try to do it by yourself, that’s where you’re gonna get your burnout. That’s where you’re going to lose that identity of husband and wife or mom and daughter or dad and son or mom and son. You’re going to begin to make this a professional caregiving role for you, which I’m guessing a lot of families, they want to make sure mom, dad, husband, wife’s okay, but they don’t want, they want that emotional and loving connection between their parents or their spouse, and so I bring the group together and just talk about it. Let them voice their concerns, their frustration. Let them go through the stages of grief because you have to grieve every stage. You have to go through your grieving stages because they are who they are. They’re different and they’re going to be different than next day and it’s okay. That’s what I would say is let’s get together as a big family and talk about it.

Katherine:  One of the things that I think about when it comes to the stages of grieving and the family and understanding how to process through this- is something I don’t understand. Many of these assisted living facilities do not have a counselor that either rounds or is on staff, especially the larger ones. And it’s not just the residents but also perhaps family meetings and that’s something maybe we talk about in a future podcast to challenge. Where does mental health fall in all of this emotional health? Because I think with some of that, my father would have been able to more easily see this is just part of it and it’s okay to take your mom out to the restaurant and give him some tools and techniques for how to handle it if he feels people are staring at, that’s generational, right?

Francis: I think that’s a brilliant suggestion and idea though that we definitely need to dive into more because we as Americans, I feel want to keep things hidden when things aren’t going as normal as they should and so I believe that your idea of a social worker or family counselor or whatever title you want to call them is a brilliant suggestion because I think support groups carry a negative stigma with them at times and I think this needs to be more dialed into that particular person and their family and so I think you might be on to something else there about that because I think that goes back to what we’ve talked about with what you’re doing here with the serenity engages. That’s an engagement piece. You’re engaging a mental health aspect for the dependence or the loved ones of the resident who’s living with dementia and so not only are you going to be, have a better engagement with them, they’re probably going to have a better engagement with their loved one because they’re healthier mentally. I think that’s a critical element is, is improving the overall experience for the family. And so I do think that’s something to look into is the counselors, not so much support groups, but actually counselors. So I think that’s a brilliant idea that we definitely need to dive deeper into.

Katherine: Well, and I think it’s aligned with the stigma. Sometimes we don’t want to talk about those emotional issues. We don’t want to be vulnerable. I’m a huge Brene Brown fan and but to try to teach that to a 79 year old man, it might be a little bit difficult because if the era in which he was raised. Coming from his daughter doesn’t help as much either.

And there’s stigma in that. So our challenge is stigma, right? There’s stigma for them in that, Oh, suddenly my child is making decisions on my behalf. Yes. How does that look to my friends? How does, how do I don’t like that because I’m losing my independence, but other people know I’m losing my independence now.

Francis:  Right. That’s true. Very true. Yeah. And you brought up the point about what is dementia friendly to me look like, what would that truly look like? And to me it would look like all the residents have access to their front doors and they can go out their front door and stepping into it. They know they’re in a safe environment and they have the ability to walk to a shop, to maybe walk to a restaurant, to walk, to get a haircut, you know, to go somewhere that even in their early mild cognitive stages that they’re just kind of struggling a little bit. They’re going to find their way home because we have landmarks and things that refresh their memory. So we have things that guide them home where they don’t even realize they’re being guided home. You know, you maybe have a different color front door for them or things that can trigger, you know, ways for them to get back.

Is a dementia friendly org where they don’t have to worry about getting hit by a car because they crossed the street at the wrong time. You know, some of those little things that you and I take for granted where as dementia advances vision changes a lot. So you don’t know what their vision is going to be like. And that could be part of the issue as well too, is they misconstrue shapes or images and that could walk when there’s not supposed to walk in cars that are people aren’t paying attention could accidentally hit them. So it would be taking out some of those issues and be mitigating risks yet still having a lot of freedom for them.

Katherine:  That’s really impressive. And I know that there’s always multiple ways to solve problems and we’re creating this podcast out of curiosity, not out of here’s the right way. Right? But I love that thinking. And one of the things I’ve seen in a few places I’ve been recently is they the door is painted with some sort of large, a mural or something that goes around on the wall and through the door so that the door disappears. And I see the value in that too. So that, that people with advanced dementia aren’t always trying to get out. Right. And if we had these, these villages or communities or you know, whatever they are where they could leave, how would you see the care staff being able to sort of keep an eye on them? Would you have cameras around?

Francis:  That’s the kind of look at it in a couple of ways. I think you’re going to have to look at what technology we can use that can further assist. I think you’re going to also though need to have your staff that’s going to be part of maybe anybody that’s gonna ever engage. Whether it’s your custodial staff needs to be trained in how to work with residents. Maybe your staff at the restaurant, maybe your staff at the grocery store, they’re going to all have to be indirect caregivers that can either help, you know, kind of mitigate that initial shock if they’re all of a sudden in a panic to bring in maybe an additional care team down the, you know, that can get over there. So I think you’re going to have to build a more comprehensive team aspect to where you kind of shift and pass off the oversight as they move throughout the village of town, the community, whatever it is. So that’s what I’m saying, you have to have a true team effort to enable those living with dementia to have a true sense of freedom yet still have the necessarily safety oversight.

First Responders & Other Training For Dealing With Dementia

Katherine:  That gave me chills and in a good way. Yeah, I’m just thinking about the idea that with dementia we could still have our freedom, we could flow through life and the care team flows with us. Correct. And I just absolutely love that idea. So I want to come back to something that you mentioned earlier, which is our first responders and restauranteurs, people in society. The stigma may be that some of them are just untrained. I don’t think our first responders have a stigma, but I think they might be untrained in this area. So what is your thinking on that?

Francis:  I think that we definitely need to have more intensive training with the first responders and make specially with your ER doctors and ed departments and also then with your firefighters, police officers your paramedics as well too because a lot of times there was the ones that are getting calls, Hey, dad’s going bonkers. Or mom, I can’t find mom. I don’t know where mom is. Mom walked out the front door, said she was going shopping and her car is still here. You know, those are the ones that deal with that initial problem because those who we trust. And so I think we just need to give them additional tools to be able to deescalate situations when maybe you’re having an aggressive, you know, family member that has dementia. Maybe how to redirect somebody that’s fixated on this one thing. Just giving them better, more tools in their tool bag. And I think it starts with a comprehensive training program for them. Just like they get trained on a lot of a lot of situations.

Katherine:  And is that happening today? Do you know?

Francis: I think there’s been discussions. I think some departments have began to do some things. Again, I haven’t researched it enough and maybe before we have another podcast related to maybe first responders. I’ll do some more digging into that and talk to some local departments and see what they are doing for their dementia training. But I really can’t say one way or in another if it’s being done a lot or not done at all.

Katherine: That’s a great idea for a future podcast!

Francis:  I think that’s a fantastic idea. So I think it’s good to get their perspective and see what they’re thinking and hopefully they could express some needs that they might have in their departments for understanding this disease better.

I think if they know how to just what someone does when they have dementia, that idea of walking around a lot. Maybe if they’re a walkabout type person or that idea that they might touch more things than we’re used to seeing somebody touch because they want that tactile feedback. Just giving them some things to be aware of that they don’t go, Oh my gosh, why are they doing that? So they don’t create that art, that stigma for that person they’re with. So it’s really kind of giving them tools to not have it be a shocked by what they’re seeing

Katherine:  And maybe be welcoming. So any business that serves the general public potentially, maybe there should be some sort of training or educational component from the HR department or anyone who’s customer facing on how to deal with dementia.

Francis:  Yeah, that’s I think something that we need to explore because that is something fantastic, Jen, or how about this? How about you have an employee who’s maybe in their late sixties early seventies who’s showing signs of mild cognitive impairment. How do you handle that person without making them feel like a stigma? So that’s another one we definitely need to challenge on is because HR departments could become to be a huge impact on both the consumer aspect of it, but maybe their own employees that are aging as well. Too.

Katherine:  What would you want to leave the audience with today?

Francis: I think it’s when you see someone’s struggling that’s older, don’t always assume that they’re doing it because they want to have a more open mind that they may be doing it because of the, where they are in life. Think about their station. Their station today could be different than tomorrow. So give them a break. Just don’t always go to the negative of assumption that it’s an intentional whatever it may be. Have a little more positive faith and in our elderly and give them the respect that they’ve earned, I believe, and also deserves.

Katherine:  That’s beautiful and so compassionate and we can always use more compassion. Thank you Francis. It’s been great interviewing you today and I’m looking forward to our coming up podcast because we have some amazing people to interview.

Want to join the challenge? Have a story on how you or your team are fostering ingenuity. Share it with us by visiting Mavericks of senior living.com. You can find our social media links and ways to connect there along with more episodes to light your innovation fire. And don’t forget to subscribe for more great interviews.

Until the next challenge!

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Mavericks of Senior Living is produced by Serenity App, Inc. and Assured Assisted Living. This episode was produced by Katherine Wells and Francis LeGasse. The musical artist is Jason Donnelly. You can subscribe to Mavericks for Senior Living on Apple Podcasts, or wherever you get your podcasts. You can also find us on TwitterFacebook, or via email at challenges@mavericksofseniorliving.

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