Tiffany Robinson (00:03.135)
Hi and welcome to Comfort Connections. I'm your host, Tiffany Robinson. Today we're talking about one of the most challenging and often misunderstood realities facing families, dementia. Lori Labay is joining us for this conversation.

Lori cared for her mother through 30 years of dementia and turned that experience into a global mission to help other families navigate their own journeys. She's the founder of Alzheimer Speaks and DementiaMap.com, a true force of connection, education, and compassion. Lori, we are so honored to have you.

Lori La Bey (00:40.994)
Well, thank you. I'm thrilled to be with you today.

Tiffany Robinson (00:44.245)
Laura, you've become such a trusted voice in dementia care. Can you tell us how this work started for you and how your personal experience with your mom shaped everything that came next?

Lori La Bey (00:57.868)
Well, I kind of got thrown into this like every other person. Most people don't sign up for this. I mean, it wasn't even a thing to sign up for back in the day. You know, my mom lived with dementia for 30 years. She's been gone 10. And I was just a really frustrated daughter going where, where the services products and tools and where are the other families like us, they have to be out there. And kept asking the same questions kind of over and over to the doctor and

Tiffany Robinson (01:06.222)
Right!

Lori La Bey (01:27.66)
You know, even initially she was misdiagnosed for 10 years. The doctor kept telling her it was menopause. And, and my mom would say this ain't my girlfriend's menopause. We talk about this. It's different. But you know, again, 40 years ago, the word Alzheimer's wasn't really spoken. And dementia really wasn't even a word anyone talked about at all.

Tiffany Robinson (01:34.525)
Wow.

Tiffany Robinson (01:40.475)
you

Lori La Bey (01:53.026)
back then and so, you know, it was very difficult and then my dad ended up getting brain cancer and then that was a game changer where we really had to kind of put our foot down and go, okay, we got to get to the bottom of this because she had progressed so much. And so, you know, we got her formally tested at that point and they were like, yeah, she definitely has Alzheimer's disease. And back then, that's the only form they ever talked about. Everything was Alzheimer's disease.

if there was any memory or cognitive issues for the most part. so during this whole time, was in my well, I should start with my background was working with developmentally disabled for about nine, 10 years, I got burnt out, Matt, then I went into real estate. And when I went into real estate, I identified the senior market, which nobody even knew we had a senior market. And so I developed a program called classic lifestyles.

And I did a lot of educational programs for senior housing from assisted livings and nursing homes or there wasn't even memory care back in the day. And it was that that's industry that said we need you in this space. You're not about doom and gloom because they they kind of had me go from transitions of real estate to they were seeing a lot of people struggling with cognitive issues and they said.

Tiffany Robinson (03:03.421)
Wow.

Lori La Bey (03:21.26)
You know, you're really, you've kind of got this down on how to live graciously with this disease and people are tired of the doom and gloom and give me your money and it's not helping them. So will you please step into this space? And I just thought they were all cuckoo crazy. Like I'm just a frustrated daughter. But I started a blog and I was shocked that people around the world resonated with our family story.

Tiffany Robinson (03:38.015)
Yeah.

Lori La Bey (03:47.974)
And so that's really how I got into all of this was then analyzing that and I decided, okay, I'm going to take my life savings and my retirement, I'm going to put it down, and I'm going to make a difference, or small. And here I am.

Tiffany Robinson (04:02.843)
Wow. Now, before we go any deeper into this conversation, I want to pause for just a moment and talk about a common point of confusion that comes up a lot. Can you talk a little bit about the difference between dementia and Alzheimer's?

Lori La Bey (04:20.554)
Yeah, you know, initially, everything was told that it was Alzheimer's disease. And Alzheimer's is an actual disease that is a diagnosis. Dementia is a category. It's like cancer or a cold. There's all different kinds of symptoms under those things. And Alzheimer's just happens to be one of them.

Tiffany Robinson (04:26.002)
Right.

Lori La Bey (04:44.33)
So, know, Alzheimer's is known for, you know, memory issues and repetitiveness, you know, repeating themselves 45 times in 10 minutes. you know, kind of people put that in a general category, not being able to do what they used to do. But then there's like Lewy body, where people have these horrible, horrible hallucinations and nightmares where they don't sleep and they're fighting for their lives. A lot of them

don't sleep with their spouse or their partner anymore because they are they're afraid they're going to hurt them or kill them because they're literally fighting in their dreams. But there's other things with Lewy body there. Their temperature can change. They add depth perception. Then you have frontal temporal lobe where personalities can change. So you can have somebody who is maybe mean and nasty all their life and the family's like, I like

this person. They're really nice or vice versa. Somebody who is just a sweet soul has a personality change and now is swearing like a sailor and aggressively, you know, pursuing people sexually. I mean, it could be pretty, pretty blatant stuff. And then you have, you know, vascular dementia where people function, appear to be functioning pretty good and memory loss is much of an issue initially.

But they're having issues because they're not getting enough, you know, blood to the brain or oxygen to the brain. And so things start showing up and they have some hits and misses. And, you know, and then you've got, you know, CTE from concussions. And a lot of people nowadays are getting, they're finding out they have mixed dementia. So they're having more than one type. And so that's becoming.

Tiffany Robinson (06:38.491)
Okay.

Lori La Bey (06:41.702)
huge huge issue for many people. again dementia is this like umbrella term and then kind of off the spokes of the umbrella are different types of dementia with very specific symptoms yet people with dementia will say hey we have a lot more overlaps than not so be careful how you're diagnosing us and they're tired of their

diagnosis being changed. Because sometimes people start out with Alzheimer's and they're told they have Lewy body, then they go to another doctor and they say something else. So now they're using broader terms, dementia like Alzheimer's like mixed dementia is what we're hearing because it's not, you know, it's we haven't pinned it down that far. You know, we don't have a cure. Even treatment plans are are not great.

And families are kind of finding sources on their own more so than the medical profession giving them guidance on how to live their life a lot of times. If that makes sense.

Tiffany Robinson (07:50.461)
Yeah, and I'm assuming with us learning more about dementia and the different types, does that change how we approach it depending upon what type of dementia we're dealing with? Does that change kind of how the family should approach what the day to day will look like?

Lori La Bey (07:51.991)
I mean...

Lori La Bey (08:06.124)
Yeah, it really can. You have to know your person. I mean, we all have our own personality styles. We all have our own family dynamics. And so if your family where there was always somebody who was the black sheep of the family, that's probably not going to go away. And they're still going to be viewed like that.

Tiffany Robinson (08:24.806)
Right?

Lori La Bey (08:25.906)
If there is someone who's the jokester and has always looked at fun but not taken seriously, the family's typically still going to look at them like that. And so is a person with dementia. know, their older memories are typically still intact. And it's typically, you know, like, what did you have for lunch? Or what did you do yesterday where the blank face comes like, I don't know. Not sure about that one. So, you know, that's kind of where it comes into play where I think

it surpasses all of them is treating people with dignity, really focusing on not that they have a dementia or that they are, you know, sick, nobody wants to be a diagnosis, but really that they are a person first and how are we making them feel? You know, we've gotten so task oriented in this world, companies micromanage, and we've kind of thrown our relationships out the door and

Tiffany Robinson (09:19.69)
Right.

Lori La Bey (09:25.1)
Your relationship is going to be your lifesaver. know, being able to connect, making sure that the person feels safe and comfortable and is pain free in your presence, that's going to make everything go better for them and for you. So I would say, you know, taking that human approach, slowing down and reading a lot of their nonverbals as well with that, because words don't always connect.

Tiffany Robinson (09:51.509)
Yeah. Now what are some of the common myths or misunderstandings that tend to cause unnecessary fear or stigma?

Lori La Bey (10:04.718)
Well, you know, not recognizing people. The people are worried about losing their independence. They don't want their cars taken away. They don't want to be put in a home. There is still a ton, a ton of stigma about what housing looks like and why people move. And, you know, in selling real estate for 25 years, I mean, this was something that I had to teach was

you never move to remove your independence, you move to maximize your independence. And if that is a move into a community and to adult day or having a company like yourself coming in and giving resources, it's all about empowering the person. So we really have to change our mindset on that, but it's not about being less, it's being as much as we're able to be.

And, and we have to get over ourselves when somebody forgets our name. You know, we don't penalize a young kid who can't spit out our name, you know, we still love them, we still embrace them, you know, and we help them remember us. So learn learning how to, you know, engage somebody like, Hey, mom, it's Lori, your daughter just coming to see you, you know, you're staging who you are.

Tiffany Robinson (11:18.025)
We do.

Lori La Bey (11:29.822)
why you're there. So that makes a connection. Sometimes it can be little things like, you know, for family wearing the same cologne can trigger a memory or a hook as to who you are. And people forget those multi sensory things that really matter. you know, people with dementia tell me all the time, and it's kind of a cute phrase, they say, you know, my brain's like Swiss cheese. The problem is

From moment to moment, I don't know where the holes are going to be. So depending on where those holes are going to be is going to affect how my brain processes things and takes things in. So if you can give me more multi-sensory things to grab a hold of, like tone of voice or incoming and upcoming phrases, it might be an aroma, you know, like a cologne. It could be a touch.

those things are going to be really important and then always approach from the front because they need to be able to see us, they need to be able to read our lips because even though they have lost certain things, they are still reading our multi-sensory communications that we forget about. So they're going to see our eyes roll, they're going to see when we're frustrated and then a lot of times they'll mirror that back to us.

Tiffany Robinson (12:47.669)
Right.

Yes.

Tiffany Robinson (12:57.161)
So one thing that I've noticed is that denial is something that's really common. And sometimes even accepting that dementia is a possibility can be really scary for families. What are some of the early signs of dementia that families just tend to overlook?

Lori La Bey (13:16.35)
I can give you several from my own family. you know, no one teaches us about aging, it just kind of drops in the door. And even for myself, when I was selling real estate, and I was I dealt with seniors, that was my niche. I always looked at my folks like they were 10 years younger than old, because then I wouldn't have to deal with it. And I kind of chuckle at that now. But I really thought that.

Tiffany Robinson (13:25.82)
Right.

Lori La Bey (13:44.268)
you know, they were functioning fine. so they weren't they weren't old. They didn't need me day to day to check on things. I didn't have to worry about them. And then all of a sudden, something happens. And a lot of times without notice, or without warning and boom, you're in the thick of, gosh, I've got to care for somebody. But when you sit back and think about it, there were signs.

So for example, my mom's kind of pulled back socially. She was a social butterfly. She was always in the thick of things. And we just thought, well, she's getting tired. She's getting older. Then she wasn't driving at night. And it's like, well, OK, she's not comfortable with the lights flashing in her face. And I'm 66. I get that now. I'm going through some of those changes, but nobody.

Tiffany Robinson (14:23.381)
Sure.

Tiffany Robinson (14:34.601)
Right.

Lori La Bey (14:38.05)
tells you about these things and some of those things are normal aging but like one time she got lost and she could not find her way home and she sat on the road and she cried for about an hour and she was just so distraught and then she calmed herself down and she was able to make it home she only shared that with me and my dad she didn't share that with anyone else she we could never figure out why she was kind of hell bent excuse my language on watching channel four

You know, we would get together for the holidays, guys would want to watch a football game and they'd want to change the channel. And my mom would go, no, no, you know, it's got to stand for well here. That's how she was telling time. You know, back in the day, the anchors didn't change. so she knew morning, afternoon, dinner and evening by who was on the news. And we had no, no idea.

that's what was happening. So these subtle changes of people maybe not cooking like they used to or not cleaning like they used to. A lot of times it's not that they're tired and lazy and that's kind of what a lot of families think. It's because they don't know how to use the equipment anymore or they can't put the pieces together. But again, when no one tells you to look at things in that way, you have no idea, you know, and so we come to our own assumptions on that.

Tiffany Robinson (16:01.971)
Right.

Tiffany Robinson (16:06.247)
Now, what did those first conversations with your mother look like when your family had determined, you know, we are dealing with dementia? What did that look like? And, you know, how did she respond?

Lori La Bey (16:21.548)
Well, it was interesting because my mom was the one who brought up, you know, she was worried about Alzheimer's. And back then, no one even talked about Alzheimer's. We didn't have a clue at all. And then one Christmas, all of us girls would always go shopping and my mom would kind of pay us to buy our kids gifts she would come with and we'd wrap them so they didn't have to go through the hassle of hauling those around. And...

we went to her mall, which you know, the joke is we could blindfold her, give her a list and she'd come out the other end with everything. And this year, she just sat on the bench out in the mall, like with like a deer in headlights and she didn't want to come in and she seemed really confused and on the way home, she was repeating herself over and over and she's in the front seat of my van with me and my sister-in-law's are in the back and their eyes are just huge like what is going on?

Tiffany Robinson (16:54.729)
you

Lori La Bey (17:18.062)
And so, you know, I talked to my dad. My dad said, you know, we've seen some changes. Can you call the doctor? Because back then, if he picked up the phone, my mom would pick up the other line. So I called the nurse because I, you know, I couldn't talk to the doctor back in the day and I didn't have the portals. And she just kept telling me she couldn't talk to me. And I said, listen, I know HIPAA and you need to hear what I have to say and it needs to get to the doctor. My mom...

is saying she has Alzheimer's. We don't know if she had a stroke or what's going on with her. She seems fine right now, but something is really off and we need her tested, period. And we need to get to the bottom of this. And so the nurse, of course, calls back the next day and tells my mom that our whole family thinks she has dementia and she locks herself in the bathroom and is just hysterically crying.

wouldn't get out for my dad. My dad tried for two hours and then called me over. It took me another hour and half to get her out. And she was just devastated that this could be and that we thought that. And that is not what I said to the nurse at all. I said, my mom thought it, we don't know. We just know we need to get to the bottom. So she went in for the test and all they did was the 10 question test and she had a good day.

It was three months later to get in for a 10 question test, which was really frustrating. And then it was, she didn't want to talk about it at all anymore. And so it was really difficult and it was difficult because of the way the medical profession handled it. They made it much more complicated. And I think it was because they didn't know how to deal with it. And, you know, then once...

Tiffany Robinson (18:45.546)
Lori La Bey (19:09.21)
once we got a formal diagnosis, you know, several years later, and she went through, you know, the three to four hour social psych cognitive test, she came out like a wet noodle. It was totally devastating to her. She knew in her mind, she felt she had failed and the doctors will repeatedly say, this isn't a pass fail. And I'm like, you know what, get over yourself. Because people go through a test, feeling like it's a pass fail.

Tiffany Robinson (19:38.303)
they feel that way.

Lori La Bey (19:38.39)
And this is a big pass fail. And so she was devastated. She went through the normal, know, depression and anger and paranoia. And then we kind of got past that. And then we can talk more openly about it. But it was something she, you know, she would be open with my dad and I, but not my brothers, not friends.

and things. you know, it's not an easy thing to discuss. But again, back then, no one was talking about this stuff. So I think it has improved because there's more news on it, more services, but it but we're still not even close to where we need to be, in my opinion.

Tiffany Robinson (20:19.365)
Right. Taking what you know now, what would you recommend a family now going through the process and just in those beginning stages of just starting to notice there may be an issue? What would you recommend?

Lori La Bey (20:34.764)
Well, you know, right away, everyone says go to the doctor and get a diagnosis. And I think that that is helpful if you go to a doctor who knows what they're doing. And there's a lot of them out there to be honest, it don't. So you need to, as much as you might like your primary doctor, you need a referral to a neurologist who can really help get to that point and then request talking with a behavioral psychologist.

Tiffany Robinson (20:55.049)
Okay.

Lori La Bey (21:03.286)
Not that they have bad behaviors, but they can really explain what's going on in a gentle way. Another thing you could do is talk with a gerontologist, know, a geriatrician, which we don't have nearly enough of. You can get on groups like on Facebook, just put in dementia or caregiver support. And you don't even have to participate. You can just kind of be a lawyer.

and you'll get a feel of what it's like. Maybe you want to attend a memory cafe, which are for people with dementia and their care partners. But I know like with mine, let care partners come in, care partners, caregivers, carers, whatever you want to call them, come to learn because a lot of times people want to check it out before they bring their loved one. And you will get so much information from people who are in similar situations.

They just find these fast bonds and they trust them because they're speaking the same language. Whereas sometimes, you know, again, I think doctors are wonderful and all of us professionals, we all mean well, but not everyone's been in the trenches. And if you haven't been in the trenches, you don't really know what it's like day in and day out. And people need that type of support. I think that's the number one thing.

that they're looking for because giving it a name doesn't help you deal with it. Telling you statistics doesn't help you live well with it. Seeing, you know, a PET scan or a CAT scan or, you know, an analysis of the diagnosis doesn't tell you, do we adapt? What do we do going forward? And that's, to me, really what most people are looking for. So.

Tapping into those that have experience and understanding are compassionate and don't judge is huge.

Tiffany Robinson (23:04.521)
I think with most things, right? Finding your community, other people going through the exact same things you're going through and being able to kind of look at their situation and take from that. Finding community, educating yourself, I think those are both so important, like you mentioned. So if we're talking about maybe making daily life easier for everyone in those early.

in that early stage? What are some simple day-to-day things that families can do to help a loved one thrive during that early stage before the care becomes more intensive?

Lori La Bey (23:40.43)
include them. Don't talk around them. Don't talk without them. Don't take things away because they can't do it all. You know, when we have a little kid and we're trying to teach them to make a bed, you know, we're not, you know, crucifying them because the corners aren't perfect. We praise them that they build the sheets and the quilt up and, you know, we're given kudos. We need to do that with people with dementia. So if

Tiffany Robinson (23:42.461)
Yeah.

Tiffany Robinson (24:05.649)
Exactly.

Lori La Bey (24:10.038)
you know, if it's a danger, let's say, let's say it's a man, I'll say, who's using equipment, and it could be, you know, it could be a saw, it could be a lawnmower, it could be, you know, a snowblower, it could be a gun. Those things are safety issues, and those need to be addressed, you know, guns need to be locked up, because it just takes a second for something to go wrong. And a lot of times, you know, we tell people to get

those things out of the house. Physically get them out of the house because they know old habits. So they'll know where the key is hit. They'll know how to load the gun. And again, those things are rare, but nobody wants that type of thing to happen. Have conversations with them in earlier stages about how do they want to be cared for.

Tiffany Robinson (24:48.757)
Right.

Lori La Bey (25:05.464)
You know, what music do they like? What brings them comfort? What are their favorite foods? What are their favorite activities? Who are their favorite people? Some of that stuff might surprise you. What are their best memories for vacations? Because those will all give you reminiscing factors. How do they feel about driving? You know, if they're, you know, cognizant that they're, you know, they've got this disease and it's most likely not going to reverse or go away.

Tiffany Robinson (25:22.868)
Yes.

Lori La Bey (25:35.502)
When is the right time to take away the keys that they're still driving because a lot of people are still able to drive early on especially with mild cognitive impairment or early stages of Alzheimer's And I always chuckle because people go well, they only drive a couple miles, you know within the house radius Well ask any insurance agent that's where most accidents occur You know, so it really is about reactionary time and those things and that can that can come and go so

Tiffany Robinson (25:57.663)
you

Lori La Bey (26:05.388)
A lot of people with dementia will say, I'm going to write a letter to my family telling them when I want them to pull my driver's license and the keys, or I'm going to make a video. And that way I can watch it or I can read it too, even though I may or may not understand it. I want my family to feel confident what they're doing is the right thing. So they're trying to help remove the guilt because it can really be a struggle for family.

If you are doing a task and maybe they can't do it all, let them do part of it. And again, you know, be inclusive. Independence and feeling connected and respected is something every single human being wants. And living with dementia is no different.

Tiffany Robinson (26:55.069)
I know you've said that your journey started with frustration. What pushed you to turn that into something bigger?

Lori La Bey (26:58.99)
Mm-hmm.

Lori La Bey (27:03.746)
Well, it's kind of funny because even when I was 13, I had a great aunt I was really close to and she was in a nursing home and I'll never forget the day she didn't remember me. And I was heartbroken. I I sobbed, cracked, tears for like two weeks and I was so angry because she remembered my brother and I'm like, my brother didn't want to come visit her. You know what I'm like? And so I was like really like.

Tiffany Robinson (27:19.828)
Yeah.

Tiffany Robinson (27:27.893)
you

Lori La Bey (27:31.106)
Like how can this be? How can she be throwing me under the bus, you know, and wanting him around? And, but I remember crying really hard and saying, I don't ever want anyone to feel this pain. And so then, you know, when my mom had it, I mean, there was a lot of, there was a lot of pain, but I'm a type one, a personality. I step up and I,

Tiffany Robinson (27:31.573)
you

Lori La Bey (27:56.15)
look like I'm in control and I'm handling everything and I have my to-do lists and all of that kind of stuff right in front of me. But you you have to feel these emotions because if you stuff them, they're just going to explode and come out, you know, sideways on you. And that is extremely, extremely important. So.

And you need to realize, I think there's a lot of societal pressure that we put on ourselves that we're supposed to do this alone. We're supposed to buck it up and just handle it. And one person really can't handle it all. You really need a tribe and you, and the person with dementia needs those other people in their life too. You know, nobody wants to be tied to one person 24 seven if they have dementia or not.

You know, they want a little freedom. They don't want to be stuck with you no matter how much you love them. They want variety in life. They want their other relationships, their other peeps that fill them in different ways. And I know for myself and in my own family, you know, my brother said, well, you really didn't let us in. And I'm like, well, hey, you didn't really ask, you know, you really weren't pounding on my door to really step up to the plate. But as we had this conversation,

They said, well, you you just did things so well, and we didn't feel like we could meet your standards. And I didn't know I was giving off that vibe, you know. And so we kind of got into this blame game of, well, you wouldn't let us in. And I'm like, well, you could have had this conversation earlier with me too. But they really didn't want to feel the emotion. So it was easier.

Tiffany Robinson (29:37.909)
you

Lori La Bey (29:42.552)
for me to just do it. But then, you know, as time passed, they realized how much they had missed. And I had all these great stories that they didn't have. And so even as someone progresses, you know, into the the overwhelmingly of this disease, and even at the end when they can't communicate, there are beautiful memories and life lessons.

that you will take with you that are just undeniable. If you open yourself up to not always being perfect, none of us, know, even people look at me as an expert. I'm like, none of us are experts. None of us ever will be because this disease is changing. Every person with dementia is different. Every person they interact with is different. Every environment is constantly changing. So you can't always repeat what worked.

And even if you do, it might not work, you know, five, 10 minutes, two days, 10 months from now, but it might work again at another time. And so it's about building a toolkit to really help people, you know, be resourceful and not beating themselves up because they weren't good enough or they were too scared to step up. Everybody brings their own personality to the plate. And that's the beauty of life, you know?

Tiffany Robinson (31:10.121)
I really liked how you talked about beautiful moments within dementia, right? We think about dementia as this horrible thing that it is, but you found beautiful moments in there with your mom.

Lori La Bey (31:14.231)
Mm-hmm.

Tiffany Robinson (31:22.005)
One thing that we hear a lot from families and you ask them how they're doing and they say we are just surviving day to day. It's one day at a time. How do you help families move past that crisis mindset and to something more sustainable and maybe even meaningful where they have those beautiful moments?

Lori La Bey (31:42.562)
Well, I have a story, kind of a program that I tell called Tears, Fears, and Joy. And tears are about everything we feel we've lost. And we go through this grieving stage. And it's really easy to swirl down the hole. And I'm not saying don't grieve because you have to grieve. And with dementia, you grieve constantly because there's always something new that has changed that you feel you've lost in that person.

But what I've learned to tell myself is how lucky am I to hurt this bad because I love so deeply. And that helped raise me above because there are a lot of people that have never loved that deeply to lose that much. And that really helped me balance the grief out and the loss. And then there's the tears or the fears.

which is really about what's going to happen next. And if you're like me in a type A personality, you're making plan A through Z to avoid everything and detoured around it and fix it before it becomes a problem. And what I realized was when I was doing all of that planning, you know, trying to control things which are out of my control, or when I am kind of living in the past,

of what I wanted my world to look like and kind of going through those grieving moments, I was missing the moments right in front of me. And the moments right in front of us are critical because they are the only place that we can recognize joy or create it. And so if you want joy in your life, you have to pay attention to what is happening right now because

Those moments of joy have never left you. They've just changed. They might be a lot more simple. It might just be, I mean, think of the times you just sit next to somebody on the couch and you don't say a word, but you're just in their presence and you feel safe and comfortable. Those are monumental moments, especially in today's world when everything's gotten so toxic to feel.

Lori La Bey (34:05.518)
safe where you can just breathe easy and and not feel pressured to do something. It might be you know a giggle you know that just slides out or a glint in the eye that just captures your heart. Those things they store so deeply in your heart. They're they're so much more important than these big flashy things that we're looking for.

Now we look for these great big moments like when a baby takes their first steps, you know, we're not looking at those things. We're looking at the essence of the soul. And when you connect on that level, it's absolutely incredible and it opens doors to communicate in different fashions. It allows you to be able to know something without words and to

feel something not only for yourself but for them. Harry Urban who's been living with dementia for quite some time said, know, sit down and relax. you know, sit on the bench and take in the warmth of the sun, you know, the breeze flickering over your face, maybe the aroma of the flowers.

and just breathe in the essence with me. Feel the calmness. Instead of thinking of what do I have to do next, just take a break with me. Just be with me. And I think if we can train people to get out of their head and into their heart, that's probably one of the most beautiful gifts because everything that I've learned through my dementia journey,

I can use in all of my life with everyone I interact with and it's, you know, it still works. It's not just for somebody living with dementia. It's just for a greater good in a more peaceful kind world.

Tiffany Robinson (36:15.441)
I think that is very beautifully put how you described that. As we are getting towards the end of our call today, I really wanna make sure that we talk about Dementia Map. Can you talk about that platform and really the gap that you were trying to fill when you created it?

Lori La Bey (36:34.392)
Sure, so on my other site, Alzheimer Speaks, I always had resources because I felt there was such a lack. a few years ago, Dave Weedrick and I partnered up and built Dementia Map. And the intent was to connect people globally on resources, products, and tools, and insights where they could

you know, go in and feel safe without having to build a profile or remember another password and just leisurely look for resources on their own time frame. really believe that both families and professionals are looking for resources, but they don't know where to look. You know, we have resources from our government. We have resources for nonprofit. We have resources for profit.

We don't really even have resources for people in the trenches who have created blogs and Facebook groups and videos and written books. They don't even feel like they belong and yet they're probably the most relevant out of all of them, you know, in terms of how to live peacefully. So I wanted a place where everybody fits. I didn't want anything where, you know,

Making money on it, of course, is needed to a point. you know, anyone who has a service product or tool can get a free profile that's pretty in depth. The goal is to connect people and then if people want extra help with advertising and social media and kind of building their brand, then we have very inexpensive plans to do that. But nothing costs the public any money.

We don't track them. So some businesses say, well, you know, want to know, you know, how many people with dementia and how many people in this area. And I'm like, I can't give you that. And I'm not going to because it's about the safety and the comfort of the public. And I personally don't buy into all the Google analytics. And I know the Google gods will probably knock me down one of these days. But but it really is about ease of access in coming together. And some will say, well, we only need what we need.

Tiffany Robinson (38:47.477)
you

Lori La Bey (38:56.928)
in our local community. And to me, that is such a huge mistake. And people have seen, you know, what a gift Amazon has been, even though they might crap about it. But they can access stuff all over the world. And, you know, we wouldn't have dementia friendly communities, we wouldn't have memory cafes, if we weren't talking to people around the world and sharing ideas to be able to expand the knowledge base.

because none of us can do this alone. And every community and situation needs something maybe a little bit different, and that's okay. Dementia isn't a bed and a bag. There's not one key that's gonna fix everything. There's not a silver bullet. And so you have to be able to look at your own family and what works. There's like 150 categories that people can search. They can search by location. They can search by category. They can search by keyword.

There is some wonderful articles in our blog. There's terminology in our glossary. There's a calendar of events that isn't as robust as I'd like it to be. And I feel that that has to do a lot with the staff turnovers that we're having now. But we're building it and we're growing it organically. I'm not just buying lists and putting people in. I want people who are actually going to respond to you.

and truly want to help. so I think there's a big difference there. Same on Alzheimer's Speaks. I have a whole educational resource section that has tons of free things from videos and audio and tools and poetry and dimension arts that people can access there as well. But I just think, I think that knowledge is power.

and it reduces stress when people are empowered.

Tiffany Robinson (40:56.725)
I really loved, I was taking a look at the dementia map and I loved that you said it's a toolbox to care better. I mean, I just thought that was the perfect description. And I really think you've created something special for families to utilize.

Lori La Bey (41:04.206)
and

Lori La Bey (41:12.11)
Thank you. Well, and it's for professionals as well. You know, they don't always know where to go as well. And so, you know, we want everyone to be able to access because again, none of us know it all and we never will. You know, that's life. It's, you know, this whole experience is a learning game. It's a journey. And this is just hopefully a tool that can help people.

Tiffany Robinson (41:14.857)
Yeah.

Tiffany Robinson (41:38.855)
As we come to a close, Lori, what's one thing that someone listening today could do this week to feel more confident in supporting a loved one with dementia?

Lori La Bey (41:48.748)
Know that you're doing way more than you think you're doing. Know that just thinking about that tells me that you are in tune and care. again, keep in mind the tasks are important, but how we deliver them is critical because it's not what we do, it's how we do it and how we make someone feel while we're doing it.

Tiffany Robinson (41:51.966)
Right?

Tiffany Robinson (42:00.338)
Exactly.

Tiffany Robinson (42:17.203)
Lori, thank you so much for sharing your insights and your knowledge. We really appreciate your time today.

Lori La Bey (42:24.248)
Well, thank you for having me. I appreciate being here.