Tiffany (00:04.272)
Today, we're joined by Ellen Belk, founder of Keep In Mind, Inc. and creator of the Keep In Mind online community where Ellen's mission is to elevate the global dementia IQ. She is also the creator for the nationally recognized 360 Team Approach Training Program for Dementia Care. With decades of experience overseeing more than 100 care facilities across Vancouver, Washington and Baltimore, Maryland,

Ellen has made it her life's work to help caregivers connect more meaningfully with those living with cognitive decline. Through Keep In Mind's 12 module program, Ellen teaches caregivers how to build trust, navigate emotions, and lead with kindness in every interaction. Ellen, welcome to the podcast.

Ellen (00:50.114)
Wow, Tiffany, it's so great to be with you. Thank you.

Tiffany (00:53.766)
Before we get into the heart of your work, I'd love for listeners to hear a little bit about your background and how your experiences in long-term care led you to create the Keep in Mind approach.

Ellen (01:06.9)
am a girl that kind of stumbled literally into senior housing. I had a whole different career post college and for the first 10 years of my working career. there was a point, it was actually happened after the 9-11 attacks. I was a citizen of New York at that time and I transitioned professionally, personally, all in one fell swoop. And that's when I...

sneaked in or snuck into, if you will, into senior housing. The first job I ever had was as a activity assistant in a skilled nursing community. I didn't know anything. I didn't know what I didn't know. I just know I needed a job. But through that experience, I was able to kind of grow relatively quickly. And Tiffany, I held a bunch of jobs here and there and everywhere, but how I really kind of formulated

I can tell you what the impetus was of how I formulated my team approach. It was when I gradually elevated professionally to work for a very large industry provider of senior housing. And I was a divisional director of memory support operations for them. And in that role, was responsible for overseeing 24.

know, independent, excuse me, you know, independent, freestanding, assisted living and assisted living memory support locations. So there was 24 buildings spanned out across 11 different states and that was my territory. So every week I was here, there and everywhere from, you know, Kentucky to New Jersey and many states in between. So in that role is when I really started to realize the, methodology of how to solve problems.

Tiffany (02:45.537)
Wow.

Ellen (02:53.59)
by utilizing a team approach, a different way of looking at things.

Tiffany (03:00.378)
That's a huge amount of support that you have to provide across all of those buildings and all of those people. So I imagine you had to come up with something that helped you do that efficiently.

Ellen (03:12.758)
Well, really truthfully Tiffany, in that role, again, I was the dementia person. And so I'd love to tell you that they invited me to parties and I got to come to grand openings, but it really wasn't that. My role was to come wherever, to triage and be wherever I was needed. And it was every week, it was every week somewhere because there was something going sideways. There was residents that were...

they were struggling, the professionals on the ground were struggling with certain residents or there was a resident that had moved in and the transition wasn't easy and there might've been some family complaints. So I was always solving problems. Well, it was in that role, Tiffany, and I did this for several years and in all these places, every week, travel, travel, location, location. And I was flying home one day and I thought to myself, it's kind of always a lather for me personally.

it was always kind of a lather, rinse, repeat situation. And what I mean by that is, as I went to solve these problems, whatever originally drew me there, for the most part, over these three and a half years that I did this work, it kind of narrowed down to one or more of four things. Was there something in the care environment?

the noise, the tension, the location, whatever was happening inside the care environment, within the four walls of where people were living, that was usually a big starting point where things started to go sideways. How are we communicating? How did we speak to our elders that we were caring for with cognitive decline? It is a very learned skill.

that was not happening and those were causing problems. And then there was other things nutritionally and also from an activity perspective, if people are just sitting around all day, yeah, there's going to be some problems. So it was those four things. kind of created my four pillar philosophy, which then turned into my team approach. And I, to this day, all these years later, it is now the, you know, the fence post of all the work that I do, even now consulting with.

Ellen (05:18.556)
know, families or long-term care providers, I always lean into helping them solve problems from one or more or sometimes all of these four pillars of my philosophy.

Tiffany (05:31.866)
That foundation of experience really sets the stage for what we're talking about today, how caregivers can use compassion and understanding to improve the lives of those living with dementia. Let's start with one of your guiding principles, be a best friend. Can you share with us what that means?

Ellen (05:48.79)
Yeah, I mean, here's how I, when I work with our, this is a big, this is my starting point with frontline caregivers in long-term living settings. And that could be anything from, you know, a skilled nursing setting into assisted living, memory care. Quite frankly, it's a very valuable starting point for anyone delivering any kind of care, even home health people. You don't have to be in a long-term setting. Clearly we all know that.

You could be someone going into someone's home where they live and you're the care partner coming into that home. You have to approach your interactions with, again, I will always refer to them as my friends living with dementia, living, living is the key term there, living with dementia. You don't get it on a Monday, you don't get the diagnosis of some sort of dementia on a Monday, and by the next Thursday, you're gone. This is a long.

progressive degenerative brain disease. You could be caring for someone with cognitive decline for many years, even decades in some instances. So you have to approach it as if these are your friends. And it's funny Tiffany, because they typically do become your friends. If you care long enough, you just bond and you connect and you find the thing. you have to, and so when I work with frontline caregivers, I always start those sessions with, imagine,

Picture in your mind your best friend. What's their name? Why do you like this person? Why is this person your best friend? And then I go through some real life tangible check marks, if you will, with them so that they get their head in that head space of thinking about their actual best friend or what makes that best friend great. And then I pivot that to that's exact same thing, the same mindset, the same heart.

the same servant leadership style that you need to have when you are privileged, by the way, to serve those with cognitive decline. You have to start there because when people living with any kind of dementia diagnosis, anything from Alzheimer's disease to all the other hundreds of ways you could have a dementia diagnosis, there will come a point at some point in that journey and it varies for every person.

Ellen (08:09.472)
They may not be able to communicate effectively. They may not be able to communicate verbally at all. But you as the care partner, you as the best friend care partner, you can still communicate. You can communicate by hugs and smiles and winks and, you know, a gentle touch on the back or the hand to a gentle reassurance. Those are all ways that we would.

technically interface with our best friends, right? And we have to absolutely, it's mandatory with people who are losing various capabilities throughout their journey as their brain literally goes into atrophy.

Tiffany (08:46.916)
I really appreciate that mindset of these are real people that are in need of care and we are really honored to be able to be the ones that are caring for them. One of the things that really stands out in your work is how you've made dementia training both accessible and practical for frontline caregivers. Can you tell us about your 12 module training program and what makes it different?

Ellen (09:11.104)
Well, I mean, I'm not your typical, gotta be, I don't know if you've noticed, but, I don't know how your listeners will feel, but I am not a person born and raised in elder care. I'm not, I came from a very different communications background. So I'm a communicator by trade professionally, even the profession I told you I had before coming into long-term living, it was as a communicator. And I'm just an expressive kind of person in general, even if I had no job.

I realized that the communication is so totally critical. So when I, I've led trainings and now everything, most of what I do now is available online for frontline staff because again, Tiffany, there, you know, back pre, you know, pre pandemic, I was traveling the country, doing things in person that kind of changed. And it also makes it easier for these very overworked, often underpaid.

frontline caregivers to get on-demand learning because they can do it on their own time after they put their kids to bed or whatever. So I love the online learning aspect of it. I get to really show my own personality. And then I also use Tiffany legit stories from my experience in the field. I can tell you 300 stories without barely blinking an eye and I can name the people, first names only obviously, of the residents that I...

did that thing with. So I use a lot of examples with my frontline care staff trainings. that's always been really well received by those in the trenches because I let them know, yeah, I'm standing before you or I'm on your camera now, but I was one of you. I was absolutely one of you when I started and this is how my journey began. So I'm not some stuff suit that's just speaking at them. I'm legit.

using real world examples that anyone who does this work would absolutely appreciate and understand.

Tiffany (11:09.796)
I really love that. And as a person who also works in the training environment, we love anything that can put training in someone's easily. Right. You mentioned that person who's maybe doing their training after they put the kids to bed, maybe on a Friday night. That's what works for them. We're great. And we're excited that they have this at their fingertips available. One of the things I noticed on your site, and I actually really appreciate it, is it also mentioned that, we have this virtual element

Ellen (11:19.67)
Yeah.

Tiffany (11:39.642)
but we do still offer hard copies. And I know we don't like to talk about that. We like to always talk about, you know, innovation and technology, but I think it's great because there are still those caregivers who just have a hard time with the technology. And I'm always a bigger fan of getting the knowledge and the learning in someone's hands at a way that they can digest it. And then I am at saying 100 % of the time, the technology...

is what we need. I really appreciated that you have that other balance of, yeah, if we need to have that, we have some handouts for people that need to be, you know, given the learning in that way.

Ellen (12:16.514)
I really, you know, I love that you're saying that because I'm old school. I'd love everything. I would love everything to be on a printout, here's the other thing. Here's the other thing about the handout is that, yeah, and that's a one-time purchase. It's a pretty nominal fee. because to your point, people are free, even the owner operators, sadly, the people in charge of some of these places.

Tiffany (12:21.518)
Yeah.

Tiffany (12:25.178)
Yeah.

Ellen (12:41.462)
their employees who have a computer in their pocket, also known as a phone, have no problem doing things online. But it's the operators I find that have given me the biggest pushback because they don't almost, they doesn't feel like they trust their team to just go home, get the kids in bed, sit in their jammies and take the online course, even though you can tell. I it's just, I get more pushback actually from the actual operators. But to your point,

I also believe regardless of who is, whether you're seeing it on paper or you're watching it online, am a person, may very me personally, I'm a very visual learner. So these 12 training modules now on paper, they come in a set of 12. Online, I do two to a 40 minute episode. So you get a little faster with me on camera, but you get two.

two modules in every training. So there's six total video trainings, but then there's 12, you know, hard copies. whatever, it all works. But I lead with a lot of pictures. And why did I do that? A, because I think adults and whether you're a 19 year old adult frontline caregiver or you're a 59 year old or above frontline caregiver, adults are more visual learners. Again, you probably being in the education space,

Hopefully you concur with me on that, but that's been my experience. So I am very picture heavy. I'm bullet point heavy and it's not a lot on the slides nor on the page. I use motivational things on the page. We even did a Spanish version of the hard copy. I don't have that in the video at this point, but you know, and I've been told, and this is where technology is way above me, but I've been, somebody approached me and said, well, we could do all of these trainings in other languages.

Tiffany (14:06.628)
I do.

Ellen (14:34.508)
But I'm so, yeah, we haven't gotten there yet. I wanna make sure the content is exactly, the translation reflects what my brand really is. So for right now, it's just the way we have it. But yeah, I also, like I said, Tiffany, both online and on hard copy printout, it's very visual. It's a visual learning experience as well.

Tiffany (14:56.748)
Let's talk a little bit about caregivers beginning to see dementia through more of a compassionate lens. So, you the challenge is language, how we talk, listen, respond. You have a module, Do You Speak Dementia, that really captures that idea. What are the key lessons that caregivers are taking away from that?

Ellen (15:18.07)
Yeah, I, gosh, girl, I have to tell you, I created this when I formulated my company, after I left that role that I told you, I covered all that part of the country, this is when I launched Keep In Mind. It was 2011 and I left that position. I started this, you know, my holistic four pillar philosophy that was based on my team approach. I also want to say something about team in my world, in the Ellen Belk, you know, keep in mind world.

TEAM stands for Together Executing a Mission. That is what, it's not just like, you know, hey, like a basketball team, although I've played on those as well, but it really was taking the word team and repurposing it so that it made sense for those of us that are in care settings. So again, it's Together Executing Mission. And in my world, every person, so often Tiffany, in the professional care space, everyone just,

tiles onto the actual hands on caregivers. Well, you the ones doing the, you know, helping residents get to the bathroom or helping them get to the dining room. But the team really consists of the person that's sitting at the front desk who welcomes in outsiders or who are the salespeople who are giving tours, the chef who's cooking the food, everybody's on the team. So that's the other beautiful thing about it. I bring up, I don't only force all this knowledge.

on the actual hands-on caregivers because I believe, yes, they're usually the face of our buildings when we're not there, but it's important for everybody in that building. think even, what, if the janitor is walking down the hall and they see a resident in distress, they're a caregiver. They've got to, we all, everyone who works inside the building needs to render care or mitigate a situation. You know what I mean? So it really is a together executing a mission.

perspective and in regard and it all does not only start with a friendship base as we've talked about but there is a the do you speak dementia was I got like eyebrows raised like I was being offensive when I launched that back in 2011 and I'm like I'm not being offensive at all there is a knack and a skill to speaking properly and coherently to people that are with a progressive degenerative brain disease

Ellen (17:37.128)
It is a learned skill and quite frankly, it's okay if not everybody can do it. Sidebar, I've had both my dad and now my mother who I'm caring for, both had kept my dad's journey is over, my mom's journey is still in full swing and both with cognitive decline of varying diagnoses. But I have siblings that do not speak dementia friendly. Guess what? I give them tasks that keep them shopping or keep them at a distance. They're helpful to an extent.

but they're not part of the day to day because they do not speak dementia. And when you don't speak slowly, articulate, take pauses, speak with your face, you know, make sure you let, because sometimes for those that we're serving, those that were privileged to serve, when they can't understand what we're saying technically, guess what they do? They read our body language.

So if I have a scowl on my face as I storm into their room and I tell them it's time for dinner, yeah, even if they don't know what you're saying, they still won't like what you're saying because you have to be light and airy and smiley. Everything sounds better when you're saying it with a smile. That's something I say. So the residents that we serve, the loved ones, the people, whoever we're responsible for, especially as the journey for them progresses,

they will not maybe understand what you're saying, but they'll get a sense or they'll for sure Tiffany, they'll know that they like or don't like you based on the tone, your presentation, if you're smiling, if you give them a love, know, a gentle hand squeeze as you, you know, smile, those are all indicators that touch a person in their soul. So if I'm living with dementia and I'm struggling cognitively, I really don't understand what you're saying.

I don't know you, I don't think I know you, but you're smiling, you're speaking in a way, even if I don't understand your words, but you're speaking with a smile on your face, I can tell that whatever you're saying probably is decent. We marginalize people with cognitive decline, but make no mistake, they're just trying to keep up. And for very long into the journey, like I said, you don't get the diagnosis on a Monday and the following Thursday, you're gone.

Ellen (19:58.154)
If that does happen, something completely else took you out. It's not the dementia. So you, they really are able to learn and adapt. I've held the hand, I've held the hand of a person on there, you many times, quite frankly, of someone on their death bed and they haven't spoken in months possibly, but you would be amazed at how they still can communicate. You know, we don't have time to get into every nuance right now, but speaking dementia friendly starts with attitude. It leads with heart.

And when someone is responding back to you, like many of us that care for those living with dementia know that there will come a time where they're incapable of speaking like we're speaking right now in full sentences and words. There may be jumbled language. It might be confused language. Sometimes we call it confabulation.

But you know what? It's unbelievable. I still speak it. I still have a ability to know typically what the person is, at least get close to what the person is saying. And I nod my head. tell them that's, that's depending on what energy they're giving off. Maybe it's a great thing that they're telling me in their mind, or maybe it's not. And if someone starts to cry as they're telling me something, then I mirror that. I mirror that energy and I say, I'm so sorry to hear that. I gently squeeze their hand if it's appropriate.

tell them that I understand and you know what I mean? that's kind of, that's again, those are some of the nuances of speaking dementia friendly.

Tiffany (21:27.366)
And like you said, not everyone has this ability. A lot of times, you know, I am sharing with people that the caregivers that are caring for individuals with dementia, they have something special. They have what it takes to, like you said, speak dementia. Also, a lot of times we hear about all of the things that dementia has taken from a person or from a family. And part of your training is called I'm Still Here.

And I really appreciate that mindset. Can you share with us the focus of that principle?

Ellen (22:03.368)
because there's still so much left. I mean, I'm telling you, I just shared that on a deathbed, I've had, I'm calling it communication, but I think now that you've heard me speak, you get a sense of what I mean. It's not like we're having a full-blown conversation as someone is transitioning. It literally might just be looking at each other lovingly. But it's... The crux of the I'm still here.

Tiffany (22:24.516)
Exactly.

Ellen (22:31.906)
module is that the dementia does not define the person. whether they just got the diagnosis last week or there are several hours from leaving this earth because of the diagnosis, which ultimately will, you know, be a part of their demise at the end of life. Here's another thing. the dementia

absolutely and can ravage. You know, that's a little bit of an aggressive word because it is a slow, for the most part, and again, this isn't a masterclass on all the ways you can have cognitive decline, but it is for the most part, whatever type you have, a slow progressive degenerative disease, but, but it's, it doesn't touch. takes, it robs you sure. And people focus on the mom's been robbed of her brain, mom.

Yes, but there's so much still there. And I always remind families, because I consult with families now too, you have to, we, as the cognitively intact people who love these people, hopefully, not everybody loves the person they're caring for. That's a whole different conversation. But for those that are really trying to do the work the right way, you have to remember the cognitive decline does not impact the heart and the soul of the human being.

of the heart and the soul inside that body of that human being in front of you. My mom is a perfect example. She doesn't remember fight. I could tell her I won the lottery and mom, now we're millionaires, literally four and a half minutes from now she will not remember that happened. But she still says like, I'm her 50 plus year old, my mom's 96 and I'm still her youngest child and I'm in my 50s and she will still treat me like a mom. It's sometimes a little jumbled.

but I can feel the mom energy off of her. Why? Because she doesn't even know she doesn't remember, which is such a blessing in my case. She's passed that struggle. That struggle is, it's just, once they cross over, once somebody living with dementia kind of crosses that little Rubicon, if you will, it's not like bells and whistles go on. There's no parade on the day something like this happens, but it is for those of us caring. Once they cross over into that, forgive me, but this is the way I like to refer to it, that

Ellen (24:51.094)
blissful ignorance, and I don't mean ignorance as if they're dumb. It's now like a blissful ignorance that they don't know what they don't know. That's when things become a little more peaceful because they're not fighting it anymore. And it's in those, I know it sounds sad, but it really is when they're not aware that they're cognitively challenged anymore and they are cognitively challenged. It's almost like you see a little shift in energy and it becomes softer and they're not fighting the disease anymore.

And anyway, in all those cases, regardless, it doesn't touch the heart and the soul of that person. And so I always want to remind family members there to keep talking, even if your loved one is on their deathbed, to keep laughing, even if your loved one might not physically be laughing back with you. Your energy is felt in that heart and the soul within the person. doesn't rob you of that. So there is somebody still there up until the very last breath they take.

The dementia does not define them. They still are, you know, well within that body. It just takes our ingenuity to get some of that energy out of them as well.

Tiffany (26:03.254)
This is such a hard process on the families and we want to remember that they are, as you say in your training, are, we want to treat them like they're allies in care. How can the caregivers work with the families to help them feel seen and included in the process?

Ellen (26:23.36)
Yeah. That's having been a daughter and now I'm still currently, I hope everyone in the sound of my voice takes my, from a professional perspective takes my training because this is an area that is not as well, what's the word I'm looking for in a professional setting.

We've lost our way slightly in realizing that those frontline caregivers are absolutely the face of our business. Especially when I, and I've been in senior leadership and when I work with our other regional folks and senior leaders, I'm like, you guys, and even the people like the executive directors at the building or the owners of the home health company, your people, your frontline people are the face of your business. And when all the executive directors go home or the...

owners of the company go on another trip to Tahiti, whatever. These people in the field are your face of your company. And the fact that we don't give them this type of like managing of the families training. I have that one of the one of the trainings in this series is don't forget the families. And because it is a it is this is a little more where training is important. It's not it's a learn skill to be able to be a frontline employee.

very, very valuable member, often not treated as a valuable member of the team, quite frankly, which is why I created this team approach. Because let me tell you back when I told you I was developing all of this, I saw such a need in how these frontline caregivers who were legit metaphorically and physically doing heavy lifting for the business that makes people a lot of money and we were not giving them enough support.

Truthfully, I'm trying to answer your question, but it's a very hard uphill battle to get the decision makers to realize how important, it's not just about how to take someone to the restroom or how to get them ready for the day. It really is people management as well, to your point, Tiffany. Whether I'm a home health person coming into your home or I work in a long-term setting and families come and visit on the weekends.

Ellen (28:41.824)
The fact that our frontline caregivers need to also have some personality and some confidence in being given the directives or the training and the training for sure on how to interact with Mabel's daughter that flew in from Seattle who's kind of grumpy. Guess what? As a frontline caregiver, you're gonna interface with that person and we need to that frontline caregiver the skills for that.

But I will also tell you this, I am in production right now behind the scenes. I'm creating a team approach for family caregiving as well. Because again, not only have I been 25 years in family caregiving, I'm 24 years in professional caregiving. So I have walked, this is my life on both sides of the equation. And I really believe in my heart, sadly, because far too often professional settings don't...

always value this level of training for their frontline people who are the faces of their company. I will say that until my last breath, because it's true. Because I've seen a lapse, and I sell this service, and it's still a hard uphill battle sometimes to push. But for those that embrace it, then I'm always welcome, and I'm so happy, because there are organizations, obviously, that embrace this. But I also thought, you know what? If I can't fight the battle on the provider side, then guess what? I'm going to

the people on the care receiving side. And so that, cause you need a team of people to be a family member of someone with cognitive decline and coordinating care and managing care. So there is a team approach for that coming soon. Stay tuned. I hope I didn't butcher that answer, but that's, it's a little bit of a tough sell Tiffany and we're still a work in progress to get those frontline care staff to the training that.

in regards to the people relationships in handling and managing the nuances of personalities to your point that they'll interface with as they provide care. It is a challenge.

Tiffany (30:42.98)
I love to hear that there's training coming for family caregivers because that is, it's really its own beast. It is such a hard job. There's so much included into it. And you know, it's not as if these family caregivers just get to focus most of the time on their loved one that they are being an advocate for. They're usually also keeping full-time jobs. They have a family, they have a house. There's so much included in that. So happy to hear that.

Ellen (30:50.498)
Thank

Tiffany (31:11.088)
We're getting close to the end of our episode and I do have just a couple more questions for you. Speaking about family caregivers and professional caregivers, burnout is a very real situation that can happen. So Ellen, what is your favorite way to recharge after a long day of caregiving?

Ellen (31:29.652)
man.

I, the younger Ellen would have said a glass of wine. The older Ellen, I am really starting to, I'm just going to keep it real. I actually have started doing infrared saunas. I just did a video about it online saying, have you guys discovered infrared? It's so relaxing. And that's kind of something that I have incorporated, but I also am a big believer in getting fresh air.

Like yesterday, I went for a long walk. I've got, be, you know, I'm in 24 seven caregiving, family caregiving mode myself. So I sometimes, but it might be reading a book. might becoming more prayerful. It might be, all I say is don't not do anything. Even when you're tired, you can literally go sit on your front porch and at least breathe deeply. Try because even if it's five minutes, start with something daily.

I also will tell you, Tiffany, I have kind of a gratitude. I have like a blessings journal. Not 100 % great, I ebb and flow with it, but I have it. It's in front of me as we have this interview, which probably means I need to write in it later. But I'd like to also remind myself of my things I should be grateful for. What I try to do, and I try to work with other people, if we only wallow in all the things in the burden and the burnout, it's not that it's not there, but you certainly should be able to think of

one or two good things that happened every day. Even if it's hard to think about it. Mom didn't recognize me, but she had a smile on her face. Guess what? That's a benefit. There will be others that won't have that. So we should always count our blessings and jotting them down, in my opinion, always says, help me, because then I go back on those rough days and I look it over and I'm like, yeah, that's right, that happened. All right, that happened. And I lived through it and here we are.

Ellen (33:22.454)
So couple different answers. I'm liking some of my holistic healthcare treatments like the infrared sauna. If you can get one, it's great. But I also just like a lot of fresh air and being grateful and counting my blessings when I can.

Tiffany (33:37.862)
It's so important to give back to yourself in this process, whether it's a family caregiver, professional caregivers, it's so important. And Ellen, my last question for you today is for those who want to learn more about your training and share it with their teams, where can they start?

Ellen (33:56.108)
Well, I'm not as much on LinkedIn anymore, so I was gonna say LinkedIn. You're welcome to follow me and sign up for my newsletter because as I start to launch things on our Keep In Mind community, that is where all of everything I've just shared today is going to live. But you can always start.

and be navigated in any direction to me from my website, which is KeepInMindInk. I'm hoping it'll be in some kind of a show note, but KeepInMindInk, and that ink is inc, as in incorporated.com.

Tiffany (34:30.5)
Awesome, we will make sure that it is in our show notes. And Ellen, thank you so much for sharing your time and expertise with us today.

Ellen (34:38.186)
It's been my pleasure. Thanks for the opportunity, Tiffany.