This week we talk with Jeff Kenderdine and Lauren Renehan, specialists in Memory Care who are working to change the health care model for individuals with dementia. As part of the Willow Valley Charitable Foundation, Jeff and Lauren are focused on building a memory care center based on a people-centered, habilitation model. This new model steps away from the harsh, dated medical model to a warmer residential and support-centered model that helps to create moments of joy, happiness and normality that connects residents to their lives prior to dementia. As the average lifespan increases, we are all bound to experience the affects of dementia in one way or another, but Jeff and Lauren's model offers a lifestyle and benefits that ensures we continue to live our best lives for as long as possible.
For more information: https://foundation.willowvalleycommunities.org/
Transcription:
Intro 00:03
Welcome to Changing the Rules, a weekly podcast about people who are living their best lives, and advice on how you can achieve that too. Join us with your lively host Ray Lowe, better known as the luckiest guy in the world,
Ray Loewe 00:19
Good morning, everybody. And you're gonna see why I'm one of the luckiest people in the world because I have two incredible guests here. But before I introduce them, and they think they're the luckiest people in the world too, I'm going to have to kind of subvert them a little bit today. But let me comment on what we mean when we talk about the luckiest people in the world. The luckiest people in the world are those people that we all want to be. They're the people who take the time to redesign their own lives under their own terms. And then they step in and live them under their own terms. And we titled our show, Changing the Rules because the luckiest people in the world handle rules really well. You know all through our lives were saddled with rules. Our parents gave us rules, the church gave us rules, our schools gave us rules. Then we go to work, our jobs give us rules. And I think it was Steve Jobs, the founder of Apple, who came up and said, you know, if you're living your life under other people's rules, you're not living your own life. So, the luckiest people have figured out what to do about rules, we all need them. But the secret is to live on your own terms. So, we have a subject today, it's a little bit different than what we usually do. You're gonna see that the people we're talking to are two of the luckiest people in the world. But we're going to talk about a topic that bothers us because it's something that gets in our way of being lucky. And we have to figure out how to deal with it. And the topic is memory care. And I have two wonderful people here. I have Jeff Kenderdine, Jeff is the Executive Director for the Foundation at Willow Valley Communities Charitable Foundation. And we have Lauren Renehan, Lauren is part of the Charitable Foundation also. But we really want to get into her background, because she has a lot of experience with this whole concept of memory care. And let me start by posing something, and I'm going to direct this at Jeff to start with. This whole issue of people having memory issues is growing exponentially. So, what do we do about it, you know, give us some idea of what we're facing.
Jeff Kenderdine 02:45
Sure. It's one of those things, that's a little bit of a double-edged sword, because advances with heart disease, advances in cancer treatments, etc, enables people to live longer and increase that health span, just the quality of life during that time being alive. Unfortunately, that results in more and more people being diagnosed with dementia. So in essence, if you live long enough, you're going to be impacted by dementia in some way, shape, or form, either personally with yourself, a loved one, a spouse, a family member, a friend, a neighbor, and it will impact every single person's life in some way, shape, or form.
Ray Loewe 03:28
You know, and you were telling me earlier, there's another aspect to that, and that has to do with caregivers. You know, we're having trouble getting people to take on certain jobs these days. And so the environment that you're in as a caregiver may not be the best environment as a caregiver to be in, is it?
Jeff Kenderdine 03:46
No actually, and Lauren can touch on this specifically from her prior career before coming into the Foundation, but my life has been impacted by dementia as well. So, my father had dementia, he since passed. But that was my first exposure to dementia. And like most, I knew nothing about this disease. And as a caregiver coming in, you're faced with the reality of, you know, a weaning cognition and being able to interact with your father as your father, that changes. And also the ripple effect on the entire family and even financially. And actually, that's the reason why I'm here at Willow Valley Communities is because of what we intend to achieve and make that difference.
Ray Loewe 04:32
All right. So Lauren, speak up. You have hands-on experience here. So you were in the memory care awards, were you not?
Lauren Renehan 04:43
Yes, I was. But you know, my career and my adventure through dementia started way earlier. So, I was lucky enough to know my great grandparents, my grandparents, and they lived to be well into their late 80s and even 100. But to Jeff's point, they all experienced dementia. So my first encounters were about 20-plus years ago. And it, you know, it guided my career path. My father was always working in the funeral industry, so I was raised there. I have a natural propensity toward older adults and the geriatric population and just end of life in general. So, I went to school to earn my Bachelor's and Master's in Social Work, because I thought that would give me the most opportunity to help the most people and really be that change agent that I wanted to be. And that led me through hospice and adult day service and eventually to Willow Valley, where I was the social worker in personal care, specifically Cedarbrook, our memory support community, for six years or so. And, I think my experience there is really what shaped my desire to change the rules around Memory Care. My dad had a stroke about 12 years ago now. And that occurred back when I was in high school, so all the while that's been on my mind. And we're starting to see my dad's memory and he's starting to see changes in that. And you know, what really hits home is when you are in those hallways, and in the traditional memory care model, there are the metal doors that are locked all the time, you enter a code to get in or out of the building. And I vividly recall moving this one resident in and her daughter was just in tears. She called me, we had the room all set up with her personal belongings, the nurse and I were ready; the daughter had taken her to lunch and brought her back to the front of our memory care building. And she calls me and she's just hysterical. She says I can't get mom out of the car. Because her mom knew exactly what was going on, you know, she was aware enough to know that she was moving, but so cognitively declined enough to not realize that she had some, you know, limitations that needed some supervision and assistance to get through her daily routine. So the nurse and I went out, and it probably took us two and a half hours that day to get her from the car into our garage and a little bit settled. So we went home with a number of bruises that day, trying to fit her into this mold that we've created of, you know, medical model, not so person-centered care. And I think, you know, couple that and similar experiences telling families, they have to move their loved one to our memory care, secure environment, with the experience of my dad and knowing that this is not what I want for him as he progresses. That's where, you know, we took the opportunity, Jeff and I working together, to really shape or reshape the way that the conversation occurs around memory care and what we're doing here at Willow Valley.
Ray Loewe 07:42
Yeah, now you use when we were talking about this before we got on the air here. You mentioned a word that really disturbed me. And yet it's probably so true, you know, the current model, we're basically warehousing our mentally handicapped people. And I don't want to be warehoused, you're not doing that. I'm gonna be with that lady, I'm sitting in the car, you're not getting me out. And it's gonna take a lot longer than two and a half hours. So how do we deal with that? Because we have to have a place where people are safe. And I think, you know, as a son or daughter of a parent who needs help, you know, the first thing we're concerned about is making sure that person is cared for and making sure that they're safe. But that's not enough, is it?
Lauren Renehan 08:32
It's not enough. If we want to be, you know, person-centered, focused on the individuals, we really do need to change the standard for that. We did as you say, we used to warehouse people. You know you develop dementia, you move into these sort of alms houses, and people don't visit. It's a stigmatized place. And we have those repercussions of what we did before to people still existing through how this medical model is shaping people's perception of what we do today.
Ray Loewe 09:04
Okay, now, one of the things I'm excited about is I live in a wonderful place. It's called Willow Valley Communities. Okay. And Jeff and Lauren are part of a Foundation here. And we have a three-part program to build something better in the memory care area. And Jeff, why don't you take a minute and talk about the three parts of this and why it's so important to have the three parts and have everybody involved, not just the caregivers.
Jeff Kenderdine 09:34
Sure. I think one of the things that we touched on here is really, you know, everybody wants to be treated with respect and dignity. And, oftentimes in the more traditional clinical settings, that's removed, and simple things of freedom of choice. And we have a phrase that we like to use, it's called room to roam. So in this arena that we're talking about on our memory care campus is seven acres, which is secure, it's safe. And it provides the ability for the residents there to freely move about, from their small household out into an outdoor courtyard and so forth. But the key difference is that they get to choose that. And, again, Lauren had mentioned about this being what we'll call the habilitation model, rather than a rehabilitation model. This is less about treating the disease, per se, and more about treating quality of life. So that is really where we're focused on the environment as therapy. And that has been evidence-based to really have a positive impact on individuals living with dementia on their quality of life. So the three components you reference, Ray, were the residential or are the residential component, the support component, which is all around supporting the caregiver, and we'll touch on that. And then the third is really about some of the advances that, because of the partnerships that we're going to have here, through research, through education and training, because of that ripple effect, in particular, with the broader community and the caregivers out there.
Ray Loewe 11:23
You know, let me interrupt for a second because I want to make it clear that some of this is available now. Some of the state of memory care is awful today. So, where you go to put parents or yourself or whoever it is that needs the care is all over the place. But the model that you're building where you are is absolutely incredibly new. So, let me shut Jeff off and go to Lauren over here. And tell us a little bit about some of the things that are being built into the model. I mean, first of all, what's this place gonna look like versus what places look like now? And then we'll come back and talk about technology.
Lauren Renehan 12:08
Sure. So, historically, what we have done is long hallways, hospital-type setting, and in some personal care homes, assisted living nursing homes, what you'll find is still two to four people to a room. And what we've learned through our research and planning for this project is that that's not going to be an option moving forward. People who are operating from a place of late adolescence, early adulthood, didn't have roommates, you know, they were getting married, they were living with spouses or partners for 40-50 years, and it wasn't natural to have a roommate. So, in this new memory care center, what you're going to see are all private rooms, private bathrooms. An upcharge is not existing for those, you know, how can we charge someone more simply because they have a certain diagnosis that really necessitates them having a room to themselves, where they can have their personal belongings, bring things from their past, you know, to decorate the walls and the rooms. And, as Jeff said, this room-to-roam concept, what we have found is, these long hallways are not conducive to memory support. So people who are not any longer oriented to you know, person, place, time, location, any of that, look down a long hallway, they see a door, and they try to what we call exit, seek or elope from that environment because they don't understand why they're there. And we're going to remove that feeling of distress by creating hallways that you know, have natural curvature, they're continuous. So when you walk down the hallway, it's not a door at the end, it's maybe a room that you could possibly go into. And then you turn the corner and there's another room. So what we've done with our existing locations, as you mentioned, is you know, we are changing the script now. So, in Cedarbrook, we do have sort of like a figure eight or a clover, if you will, of hallways that branch off into different halls for rooms or for dining or for outdoor exploration. So, that's what you'll see at the Memory Care Center. And it will be 14 households of 10 people each. And Jeff's really great at describing that greenhouse model that we will employ over there.
Ray Loewe 14:20
We can let Jeff talk, it's okay. All right. So Jeff, tell us about this.
Jeff Kenderdine 14:28
Again, back to the concept is trying to create as normal of life as possible and to make those connections to their lives prior to dementia. So, one of the things that we're deploying here is a small household model. So, like Lauren said, there are 14 households, 10 residents each. Private bedroom, private bathroom and things like you and I have in our homes: living room, dining room, screened-in porch, a patio, even a den. So those things are the types of things that you would experience in your quote-unquote, normal life every day. So, part of that small household concept is just to make those connections back to their lives before dementia and that cognitive impairment set in. The other aspect is, we have a commons building, which we often refer to as the town center. And again, that's designed to create that normalcy that connection to their lives prior to dementia. And it has aspects like in a village center, a town center with a grocery store. You know, you think about a grocery store, and absolutely, everybody in their lives has been to a grocery store at some point. So that's normal, they can go there, get some apples, bring them back to their home, which has a kitchen, and bake an apple pie. So, it's engaging all of those senses, the smells, the tastes, and just being part of making the pie. And as people learn their preferences, and so forth, again, the quality of life improves for that family, that family of 10. And, you know, if I'm trying to give you coffee, and you're not a coffee drinker, but you can't tell me that, that comes out in frustration. So the more we know and learn each other's preferences, the better quality of life for everyone.
Ray Loewe 16:29
Okay, so we're gonna get this setting that's very normal. And, my understanding is I can go outside too right, and when I go outside in a controlled environment, where I'm safe, but I can be outside, I don't have to be inside. So that gets rid of a lot of the frustration that people have, right?
Jeff Kenderdine 16:51
That's right.
Ray Loewe 16:51
And I would guess that it gets rid of a lot of the apprehensiveness of people coming to visit their loved ones who are in an environment because now it's a fun, to the extent that it can be, environment. Right?
Lauren Renehan 17:06
Right.
Ray Loewe 17:07
All right, Lauren, we'll get back to Jeff again, because he wants to talk, but I'm not gonna let him. So let's talk a little bit about the technology pieces here. Because, again, you were saying that, you know, a caregiver might have to interrupt somebody several times a day and take blood pressure to make sure they're healthy and things like that. Well, you've got some tricks up your sleeve now to get around that too. Right?
Lauren Renehan 17:30
We do. Technology is always advancing and this campus, which what's going to make it so incredible is how expensive it is, it's going to be seven acres. And you know, 140 residents, if you do that math, how do you keep tabs on where everybody is, at all times and what they're doing. And the fact of the matter is, we won't. We'll have technology do that for us. So picture like a Fitbit or an Apple watch something to that extent, and that is doing a lot of the monitoring for us. As you mentioned, it's really not quality of life to stop someone and take their blood pressure to get parameters before we administer their blood pressure medication. That's not something that was done in their early life, perhaps. And it's not something that we want to continue to do now for fear that it may trigger something negative for this person and certainly diminish their dignity. So, technology would monitor you know, where they are, are they sitting or standing? How long have they been outside, given the temperature of their of their environment? When's maybe the last time they took a drink if their hand was up above, above their shoulder per se? What is their blood pressure, what's their heart rate, what's their body temperature. And all of this sort of biometric data is captured, it could be automatically documented, giving the nurses more time to do person-centered care and therapy versus, you know, the documentation that they spend 80% of their time doing. And that, again, frees up the staff. So expansive campus, that's one thing that we're going to do to improve care. But we're also incorporating technology in some other ways. As Jeff said, the environment is really designed to be therapy in and of itself. So, the lighting that we're taking into consideration, it will have a lot of natural lighting, so that people's circadian rhythm you know, acclimates to what it should be, trying to eliminate some of those sundowning features you may have heard of, with some people living with dementia. So that comes across in the roofing structure, but even so much is lighting in their bedrooms. You know, they have pressure-sensitive flooring now or pressure-sensitive socks that you put on people so when they get out of bed at night, it turns on a tiny nightlight, they don't have to remember to turn on the nightlight which we know will not happen with dementia. But you know, everybody gets up in the middle the night to use the restroom and these sort of technological advances will take care of that for us. You know mitigating the risk of falls, helping them to navigate and maintain independence so it's not you know, pressing a button for the nurse to come help you. They're still able to function independently and do those tasks by themselves. Things such as music, you know, maybe there are buttons on the wall for the mood that that person is experiencing. So maybe when they're happy, they, the nurse or their family member coming to visit can press a button on the wall, and it plays a list of their favorite songs that bring them joy, or it presses a button for reminiscence, and it brings them back to maybe their wedding song. And all of these things would be captured at the time that they move into independent living. So you know, it has their input from when they're higher functioning cognitively, it has their family input, friends, and it's something that they can, you know, update and change along the way to match their preferences so that by the time they get to the Memory Care Center, and they're operating at a different place, from a cognitive standpoint, we're able to fill in the gaps where they no longer can. Keep bringing them joy and therapy through the environment.
Ray Loewe 20:58
So how much of that is now and how much of that is the future?
Jeff Kenderdine 21:05
It's actually, it's a little bit of both. Because of what we've learned in the research side of things, in order to really come up with this overall plan, we were able to incorporate some of those advancements into the expansion and renovations of our current Memory Care Center called Cedarbrook. And probably the best example of that, beyond eliminating the straight long hallways, it's now has curvature so you can walk and walk and walk is our garden room or greenhouse. And in there, the residents in our Memory Center are able to tend to the plants and certainly, it's all edible, just in case. But it gives them purpose and gives them meaning.
Ray Loewe 21:50
Yeah, so the Fitbit that Lauren was talking about how current is that? Or is that something that we're not gonna see for 10 years?
Lauren Renehan 21:58
If we wanted to see it now, we could, but those are sort of the partnerships we're working with, as far as you know, universities and things who could create those widgets for us to be specific for our needs and our environment.
Ray Loewe 22:11
Okay, so now let's change the tenor of this a little bit because there's all kinds of memory care out there. Okay. And to some extent, you get what you research and you get what you pay for. And let's talk about your project, specifically here. Now, you have pretty much a state-of-the-art memory care going where we are, okay. But you have this project that Lauren was talking about with the single rooms, the 10 rooms to a group or their own private dining room, the street scenes and things like that. And that's in process of actually being developed now, where you are. So first, is there a website so the people who want to know more about this can tack on and look at it?
Lauren Renehan 23:01
Yes, foundation.WillowValleyCommunities.org is our Foundation website. And that's really where we're hosting a lot of the information surrounding this future Memory Care Center. So if people log on to there, there tabs at the top, the about tab goes to opportunities for giving, and you can click on memory care center right there and learn about everything.
Ray Loewe 23:24
Okay, so if I want to find out, and we'll publish that so that people don't have to remember that, we'll put that in our podcast notes. And going back to Jeff over here, I know, the way that you're putting this together is fascinating because you have three partners in funding this thing. And at first, that bothered me and the more I got to think about it, the more I got that being part of this involves being part of it. So talk a little bit about what you're trying to do and when this thing is going to take place at Willow Valley, or at least as best you can.
Jeff Kenderdine 24:00
Sure. The overall project budget, if you will, is $50 million. And Willow Valley Communities is putting in $30 million of its own resources. And we often get asked, Willow Valley Communities is a 501c3 organization and we get asked often that well, why can't they just build this on their own? And the answer is they could build a Memory Care Center, $30 million Memory Care Center, but it wouldn't be this memory care center. And the beauty of you know, our involvement as a Foundation is we get to bring philanthropy to make this possible and make it happen. And the difference is it's not imposed on everyone like a tax, or an increase in fees. This is truly, like the word philanthropy implies, this is a choice because people care about it. They care about the impact that it's going to have. And our job has really been just to have individual conversations like this, group conversations and educating people about what this means, and the impact that it's going to have for not only themselves, their friends and family, but future generations. And the response we've had has been absolutely amazing.
Ray Loewe 25:17
I'm excited about it. I mean, this is going to be me at some point in time in the future.
Jeff Kenderdine 25:23
It's going to be all of us.
Ray Loewe 25:23
And being able to contribute and help in the design and the building of this is great. And you've marshaled outside help to do this too. And in the form of matching stuff. So good job, whatever it is you're doing, keep going it. All right. We're near the end of our time so let me ask Lauren first, do you have any closing comments or anything that we didn't say that you think we have to address?
Lauren Renehan 25:49
I think if people get the chance to watch the little video that's on our website, they'll learn so much about the amenities that will be there. So, not just the grocery store, like Jeff mentioned, but a bistro-like a sit down restaurant, an indoor stage, that courtyard is going to be the size of a football field. So things like that to create that normalcy, where it's no longer appropriate for someone living with dementia, or no longer comfortable rather for them to go out into those public spaces as their world begins to shrink. That's really going to be key to changing the conversation here and reducing that stigma so that all of those generations and friends and family are coming to visit. The other thing I think is so important is the caregiver support that Jeff touched on, and we will have an adult day service where caregivers can come and bring their person living with dementia to enjoy the amenities of the Memory Care Center. And so this isn't so much about what it's going to do to change the lives of those living with dementia at the center. But for all of the caregivers, you know, across our community and county and state and region to come in and get some education and have a little bit of reprieve from what they do on a 24/7 basis.
Ray Loewe 26:58
Yeah. And Jeff, final comments?
Jeff Kenderdine 27:00
Yeah, I believe the one thing I think is important for the audience to understand is that they're not alone in this. As a caregiver, it felt very lonely and I had no idea about how to interact with my father with dementia and knew nothing about it. And oftentimes, it's the health of the caregiver that really suffers, that they wind up saying, I just can't do this anymore. And then they move to a Memory Care Center. But this really starts to remove that stigma associated with dementia and enables that conversation. In fact, because of this project, we've had countless conversations with individuals that have been touched by dementia in some way, shape, or form. And there's a lot of fear associated with it, family members, caregivers, and we really want to be the hub for training, providing the support that they need, and really just to lighten an otherwise dark journey. And this is all about creating those moments of joy, moments of happiness, where the family members come, the grandkids come and they want to visit in our sit-down bistro restaurant. You know, where do you see that in a Memory Care Center?
Ray Loewe 28:15
Well, you know, thank you both for your comments. I think it's very helpful for us people who think we're the luckiest people in the world and know about this because this is going to get in our way and it's something that we have to figure out how to get around. And the technology is there, the thought is there. I think it's a wonderful project. So thanks for being with us and Bill, sign us off.
Outro 28:40
Thank you for listening to Changing the Rules. Join us next week for more conversation, our special guest and to hear more from the luckiest guy in the world.