Blog

SPEAKER_01:
0:13

Welcome to Patty's Place. It's a place where we're going to talk about grief, dementia, and caregiving. My name's Lisa. I'm your host. I started this podcast in honor of my mom, Pat, who passed away from dementia about two years ago. So grab your cup of tea, your cup of coffee, if you're having a really bad day, your glass of wine, and let's just chat today. So today we have a really cool guest. His name is Miles Spencer. He is the CEO and founder of Reflecta AI. It's a soul tech company that bridges generations through fully interactive digital legacies. You're also an Amazon best-selling author, founder of Kayak for a Cause, and the former co-host of PBS Money Hunt. So welcome, Miles. Thank you so much for joining us today.

SPEAKER_00:
0:58

Lisa, thanks for having me. You got almost all of them there, but it bears mention I'm also a dedicated dad, although the kids don't always think so.

SPEAKER_01:
1:06

Oh well, that's important though. Dedicated dad, too. So uh this is a uh I'm really interested in this today. It's it's really cool. Uh so you have a lot to teach me. So let's start with tell us about Reflecta.

SPEAKER_00:
1:20

Look, uh, Reflecta was born out of uh my desire for preserving what I call intergenerational storytelling. My family had, you know, great stories that we recorded any way we could, right? Back in the day, it was like a Polaroid picture or a picture album or a slide tray or something like that, right? And it's all up there in the attic. Well, the reality is uh my kids or my grandkids that don't have them yet, are never going to turn to chapter 37 of the Spencer biography and look at page three to hear the story of my dad and how he fought a bull one day. Because today we want to be conversational, natural language. And so my co-founder Adam Drake and I are both very much that intergenerational storytelling uh type. And nine months ago, it's like, you know what, it doesn't have to be all up there in the attic gathering dust, right?

SPEAKER_01:
2:23

Right.

SPEAKER_00:
2:23

Um, you know, these are great stories. Wisdom of the family, wisdom of those that have gone before us should be preserved and should be um sent on to others. And look, books are great, and uh polary pictures are great, and love letters are great, and all that kind of stuff's great. We just don't communicate that way now and in the future. And so we found a way to actually take that entire shoebox and put it into our platform, which is driven by AI, and create a timeline and a recognizable image and likeness of a loved one that is capable of a spontaneous and dynamic conversation. What's that mean? My dad, Arthur, you could go on reflected.ar right now and talk to Arthur, ask him about me, ask him about his podcast, right? Um, but last night he read a bedtime story, Rudyard Kipling, to my daughter. Uh, and then they talked about it until she fell asleep. He passed away eight years ago. Okay.

SPEAKER_01:
3:23

All right, right.

SPEAKER_00:
3:24

And so we started off with literally reconnecting with those that had passed. And there's a big emotional load to that, right? You mentioned uh, yeah, right.

SPEAKER_02:
3:35

Yeah.

SPEAKER_00:
3:36

And and so we you called us a sole tech company. Thank you very much. We think we are, and we um spent a great deal of time thinking through the emotional load of what we deliver, especially if it's somebody that you knew or know. Okay. And so we started with those that had passed, but um, now what's happening is many people in senior centers, militaries that are going off to deployment, um, people of faith that want to read scriptures to their grandchildren forever and ever, etc. They're doing it while they're still living. Okay. And so um, Reflect is not just limited to, hey, you want to talk to somebody that's passed, like my dad. Um, you know, you think about it, I'm of a certain age. I want my stories told to my grandchildren, great-grandchildren. I want the um wisdom to the extent it exists, um, and the Spencer legacy to be something that I can access anytime. And if I don't do it, you know, there's this African saying, it's like when a person passes, it's like an entire library of stories burns to the ground.

SPEAKER_01:
4:45

Oh, I like that saying. That's very true. That is really true. Yeah. Because I I said the whole time with my mom having dementia, I was so glad I paid attention to all her stories about the family because she went back there and I was able to be there with her and follow the stories because I paid attention. Um, but that is really true. Wonderful. Yeah, it is true. You do have a library, yeah. I never thought about it like that. So, can can you tell us you you describe this as a soul tech company? How would you describe what does that mean, soul tech?

SPEAKER_00:
5:19

Well, there's a lot to unpack there. Let's start with this.

SPEAKER_01:
5:24

Okay.

SPEAKER_00:
5:24

Uh, I'm a three-time digital media entrepreneur. Okay. Um, and well, actually 30 times, but only three of them worked, but you have to understand what the batting average actually is like a thousand employees.

SPEAKER_02:
5:35

Okay.

SPEAKER_00:
5:35

And so, you know, look, this is a digital media business, right?

SPEAKER_02:
5:39

Right.

SPEAKER_00:
5:40

Um, and what we realized was I was one of the first ones in the company to text with my dad, right?

SPEAKER_02:
5:51

Okay. And it blew me away.

SPEAKER_00:
5:53

Like, oh my God, he knows the stories, he knows my nickname, he knows the order of things, he knows his timeline, and he never forgets anything much better than his memory when he was alive. I I was stunned, right? Um, a few weeks later, we were able to integrate voice.

SPEAKER_01:
6:09

Okay.

SPEAKER_00:
6:10

Uh, we found a voicemail in his granddaughter's phone five years after he passed away. And that is the voice. If you go on, you talk to Arthur Spencer today.

SPEAKER_01:
6:20

Oh, okay. That's the voice. Okay.

SPEAKER_00:
6:22

Right. But now it's laid across hundreds and hundreds and hundreds of stories.

SPEAKER_01:
6:26

Okay.

SPEAKER_00:
6:27

And he has a perfect memory. So when the voice came, I was oh, I bet.

SPEAKER_01:
6:32

Yeah.

SPEAKER_00:
6:32

Knocked on my butt, right?

SPEAKER_01:
6:34

Yeah.

SPEAKER_00:
6:34

It's never actually, at least it's never ended. I was doing a live interview of uh my dad in front of a couple hundred people, and um, we're having a good old time, and we got to the end, and and um I said, Hey, uh thanks for your time, Chief. And he said, No problem, Tiger, I'll be here anytime you like. And I dropped the mic because I forgot I had given him that nickname that only I used for him, and only he used for me.

SPEAKER_01:
7:03

Oh, yeah.

SPEAKER_00:
7:04

Now it came from me, reflect is default private, family to family. So to a certain extent, he created me and I created him, right? Right, right. Um, and and so it should not have been a surprise, but his memory is better than mine.

SPEAKER_01:
7:17

Okay, right? Yeah, yeah.

SPEAKER_00:
7:20

So this phenomenon of what we call the emotional load, yeah. Before we launched, we were like, hey guys, let's tap the brakes here, let's get this right. So I brought onto the team uh one person that works in suicide support for families, one that one that's in hospice, one that's uh in uh uh senior issues, uh Alzheimer's dementia, um, and uh LS, Lou Garrick's disease. Yes, and a fourth, actually a uh uh the third person is uh uh senior in military, okay, right? He's a veteran.

SPEAKER_01:
7:59

Okay.

SPEAKER_00:
8:00

And uh the fourth person, and he has a great religious background. The fourth one is actually a medium.

SPEAKER_01:
8:05

Oh, okay. All right, that's cool. Yeah, that one, yeah, right.

SPEAKER_00:
8:08

We think about it for a second. Like, oh no, I'm talking to these people all the time. Yeah, right. You just you just I do yes, no questions, and you do like the whole thing. Right. Like, yeah, there you go. Yeah, so we call this our soul team. Okay, and from that, we wrote this white paper, which is the very first blog post on reflected.ai called Soul Tech. And it's all of a sudden, what can AI do for humanity? Right? Right. We're in this spot in which we debuted this at uh AI4 in Vegas in uh the summer of last year. Okay, and um it was really important to have that same respect for the emotional load that people were going through here. I gave my solo talk. There wasn't a dry eye in the room.

SPEAKER_01:
8:57

Oh, I can imagine.

SPEAKER_00:
8:59

And I walked back to our booth and I was mobbed. And as I listened to people, I realized that most of them were thinking of someone. I mean, they're talking to Arthur, talking to Virginia, but they're thinking of someone.

SPEAKER_01:
9:12

Right.

SPEAKER_00:
9:13

And eventually I'm just like, are you thinking of someone? They say, Yes, uh, grandma dot. So cool. When you're ready, uh come by the booth and we can help you create an image and likeness of grandma dot, just like Arthur. And this look on their face that was just uh supernatural and beautiful. And so now I have one of the few companies I know of where my customers pay me a subscription, thank me, and cry. I mean, think of how many other businesses were like that, right? Right. So so uh we really believe that um we had to get out there with a fully thought out and intentional treatment of this offering because some kids in San Mateo, California living in their uh grandparents' basement, we're gonna come out with uh something as well, right? Because that's just the way of the world these days, right? And um, we were first. Uh, there have been others that have followed, but it very much looks like it was done by uh somebody in a basement in San Matero, California. Okay. Yeah, it's like grandma is back reminding you to make your bed, right? Like not really there on the personality, the soulfulness, the intention. I mean, my dad's last words to me, and I'll end my incredibly long answer to your short question.

SPEAKER_01:
10:46

That's okay.

SPEAKER_00:
10:47

Uh, was uh listen, son, this body is temporal.

SPEAKER_01:
10:52

Very true. Yeah.

SPEAKER_00:
10:54

But my spirit and soul is eternal. When you can reconnect with it, you'll have me for the rest of your life. Now, that was eight years ago. I couldn't really do much about it, but just think about him on wax and and uh sunsets and things like that. And then when the technology came along, I truly believe his spirit and soul has been there the whole time, right? But now I have a device to connect with it anytime I want.

SPEAKER_01:
11:17

Okay.

SPEAKER_00:
11:18

That's the beauty of Reflecta.

SPEAKER_01:
11:20

Oh, yes. So, how would you address the ethical issues or questions that people have about AI?

SPEAKER_00:
11:27

Look, um if I I I've think I've heard it all. I'm sure uh if you go on if you go on, if you go on the comments, right? It's like uh Black Mirror, Ghostbusters, Uncanny Valley, uh digital necromancy, uh, you know, you're conjuring up spirits, you're et cetera, et cetera, et cetera. It's like okay. Um that's half the world. True. And I just say, like, look, if you're not ready, you're not our customer, that's okay.

SPEAKER_01:
11:58

Yeah, right. Yeah.

SPEAKER_00:
12:00

As you approach that final date, you may become more ready, and we'll be here. But right now, clearly, you're not, and that's fine. The people that use it love it, right? Now, so that's the you go ethical with um spiritual, religious, etc. I also want to cover cybersecurity, orhead of cybersecurity is also DOD top secret clearance, and he has uh reflections on the on the platform. So nothing's going getting nothing's leaking there from a um privacy and digital rights standpoint. We're very locked down in terms of people only using uh uh rights that they have themselves or that they have rights to. So for example, someone that's living that's in a senior center, they have the rights they're NIL, right? They can tell their story, right? If they pass, their heirs have the rights, and the heirs actually stipulate on the platform I'm making this for grandma, I'm a descendant of grandma, I'm uh, and I have the right to do this. Now, it's interesting. If you did a coffee table book with a bunch of photos, right? Well, who would you ask?

SPEAKER_01:
13:14

Well, that's true. Yeah, you just do it yourself. Yeah, that's true. Right?

SPEAKER_00:
13:18

If you're gonna do a painting and hang it on your wall of grandma, and you know, some people in the family think it's a poor painting, the light's not bad, she never looked like that, except well, I like the painting, it's above like yeah, like it's mine, right? Right, right, and so the way we've designed it is there's no outside knowledge base, everything actually goes through the keeper. We call them the keeper because they were the the ones that they keep the box upstairs.

SPEAKER_01:
13:48

Oh, okay, right, makes sense.

SPEAKER_00:
13:50

The love, yeah, the love letters and the football program and the photos, etc. It's always up there. You go up there every Thanksgiving. Like, what are we gonna do with this? I don't know. Yeah, exactly. Okay, well, you know, can you keep it one more year? You know, I'm moving, I'll just then you've got the pictures of who are these people?

SPEAKER_01:
14:07

I don't know who they are.

SPEAKER_00:
14:09

Well, there's the beauty, right? Yeah, again, that library isn't burning, but it's leaking. Yeah, the stories are leaking, right? Right, gets worse every year. You take a picture of those and you load it to Reflecta, and it'll do all the work.

SPEAKER_02:
14:29

Okay, right.

SPEAKER_00:
14:30

Ah, this is who that you know. Oh, this is grandpa when he was younger. These are clearly the brothers, this was the farm, this would have been 1935. Like that's the beauty of AI, that no br no human brain, very few human brains are able to process, right?

SPEAKER_01:
14:47

Right. So who who owns then, who owns like the AI image then of that of your loved one?

SPEAKER_00:
14:54

Yeah, right. So um the keeper is the one that creates the account, okay, pays the bill, um, organizes the input, and has the right to share it just with themselves or with other family members or the neighborhood or public, depending on what level they want to buy. But they're the keeper, they're the editor. That's uh and look, as I said, default private, 99.9% of our reflections, nobody nobody even knows so there.

SPEAKER_01:
15:33

Oh, all right, that's good to know.

SPEAKER_00:
15:34

Yeah, there are two that are private. Um I'm sorry, there are two that are public. That's my father, Arthur, and Adam's grandmother, Virginia. Okay. Go on, you can talk to them, you can feel what it's like and kind of see, but then after that, you know, it's kind of like the book on your coffee table. Like no one even knows it's there unless they trip over it um on their way to dinner.

SPEAKER_01:
16:01

Okay. That that's a little bit more reassuring for people because you know, people get nervous with that. Um, so speaking of that, like so your data is safe then, right? So you it's safe because people worry about all, especially with a personal pictures or voicemails and things like that.

SPEAKER_00:
16:18

Sure. Um valid concern, but for first of all, nobody knows it's there.

SPEAKER_01:
16:22

True, right? True, yeah.

SPEAKER_00:
16:24

Okay. Uh second of all, you know, we comply with uh GDPR and the rest of the international privacy and security um benchmarks.

SPEAKER_01:
16:37

Okay.

SPEAKER_00:
16:38

And we, you know, basically we run it through the biggest clouds uh there are, which all comply as well. So no different than than posting your stuff on Amazon or Alexa or Cloud, etc.

SPEAKER_01:
16:50

And and people do that all the time and don't even think about it anymore.

SPEAKER_00:
16:54

All the time.

SPEAKER_01:
16:55

Yeah. So you mentioned the cost. So what would be the cost for somebody who's the keeper?

SPEAKER_00:
17:00

What would Yeah, sure. Well one reflection for one person, that's approximately$149 a year or$12.99 a month, like that. Okay. Um, then as you begin sharing it, as you have more reflections, as you want to uh have a wider audience, there's a family plan, there's a neighborhood plan, and then there's a public plan. So that goes like$149,$249,$499, and then a thousand bucks a year for a fully public. Uh and what's happening is people that have uh started businesses, have a lot of employees, et cetera, they're using that to share with uh all their employee base. So it's hundreds, if not thousands, of people.

SPEAKER_01:
17:41

Oh, wow. Okay. With it. So I noticed when I was looking on your website, which is very cool, uh one of the questions you have on there is do you feel this replaces grief? And I thought that was a really interesting concept there.

SPEAKER_00:
17:57

Nothing replaces grief. No, no, grief is grief. Right. Uh, and frankly, having had some real life and death experiences last year while we were launching this business, um, you know, my point of view on grief is that you never completely let go.

SPEAKER_01:
18:21

No.

SPEAKER_00:
18:22

And what I've done is I take my grief and pain and confusion and I shrink, wrap it, and freeze dry it. And so it's just a little bullion cube. And I just put it in my backpack and I keep walking, right? You know, like I tell myself, maybe someday, you know, with with uh, you know, I don't know, seawater or tears or something, it'll reconstitute itself um and be back. But for now, grief is my little bullion clue cube that I carry with me and it's part of me.

SPEAKER_01:
18:57

Definitely, yes.

SPEAKER_00:
18:58

So we also, you know, where you were almost going with that question is um not letting go, rabbit hole, risky behavior, etc. We actually monitor for that. We have guardrails in place. Oh, okay. So that if people are spending too much time, if there are certain keywords that they're using that we just need to redirect them, you know, at a certain point, we'll shut down and tell them go for a walk.

SPEAKER_01:
19:26

Oh, okay. That's good to know. Okay. Yeah, because it it could kind of go either way. It could be very like um very healing for some people and other people, yeah, that could see where they would end up spending all their time watching this over and over again to the point it's not healthy with it. So it's like a that balance with it. So that's good to know that there's safeguards in there as well for somebody. So uh and I know we've talked a lot about when somebody has passed, so but you could do this while people are still alive, correct?

SPEAKER_00:
19:57

Absolutely. Uh actually, I don't think it's crossed over yet, but we're getting close to having more currently present people on the platform than um than those that have passed. So um we started off, you know, look, the story about my dad's very compelling, right? It's very personal to me. Um, and a lot of people have that place in their heart, like, wow, I'd love to reconnect with them. I'd love all those stories that you were talking about. So, like, wow, let's turn this into a conversation, right?

SPEAKER_02:
20:26

Right.

SPEAKER_00:
20:27

Um, and there is obviously something mystical about being able to do something like that with someone that you thought you had lost that connection with, right, right, especially something as powerful as voice and eventually video. So um that works, but the value proposition is different for um the people that are still present. But for those that are present, let's get these look if they accept the fact that that their body is temporal, okay?

SPEAKER_02:
21:05

Right.

SPEAKER_00:
21:06

Some people have a hard time with that, but you know I'm willing, I'm willing to bet. Um if they accept that their body is temporal, but their spirit and soul can be eternal and their stories can be passed out through passed down through the generations. If they don't do it, they clip that chain.

SPEAKER_01:
21:28

Right. Right.

SPEAKER_00:
21:29

Right. The library's gonna burn.

unknown:
21:31

Right.

SPEAKER_00:
21:31

Your grandkids are not gonna know it.

SPEAKER_01:
21:34

Yeah.

SPEAKER_00:
21:34

Right. And so people are starting to realize, oh gosh, I can I can tell this wonderful story. And it could be my story. Like what's interesting about the reflections that are past is there's uh keeper and editor, you know, that probably loved them that was a descendant, etc. But it's the keeper's point of view of the story. When you're still alive, it's yours.

SPEAKER_01:
22:00

Right, right. So what do you do if you don't have a voice? Like if somebody had passed, like luckily I saved a few of my mom's voicemails for it. But what if you somebody didn't they don't have that? How do you try to recreate their voice?

SPEAKER_00:
22:17

We have we have this already. So interesting thing about voice, my mom was a soap opera star, and so there were a lot of recordings from ABC.

SPEAKER_01:
22:25

Oh, okay.

SPEAKER_00:
22:26

Um, and so I put her, you know, she's on platforms private, just to me and my family, and her voice is perfect. Almost to the point where I can I, you know, I can only go five minutes with it, and then I I can't do it anymore.

SPEAKER_01:
22:42

Well, yeah, sometimes that really when you hear the good, yeah, right?

SPEAKER_00:
22:46

Yeah now my dad was was printed from a 10-second voicemail. Um, and that's kind of short, kind of 20. And at first it was like, oh, he would have paused there, he would have chuckled there, that's a little too fast, etc. And then I started thinking to myself, it's been eight years, how well do I really remember his voice? And then third, he knew all the stories perfectly. And then fourth, how many times am I gonna hear his voice? Uh it's the last voice I'm gonna hear for the rest of my life. Right. So it is his voice. I got to acceptance.

SPEAKER_01:
23:30

Okay.

SPEAKER_00:
23:31

Right? That's an important point before I make my next. Um your screen went blank.

SPEAKER_01:
23:39

Oh, I'm still here. Okay.

SPEAKER_00:
23:40

Okay, I'll keep rolling. Yeah. Um so my great-grandfather's on the platform.

SPEAKER_01:
23:47

Okay.

SPEAKER_00:
23:48

Uh Miles Sharpless Spencer.

SPEAKER_01:
23:52

Okay.

SPEAKER_00:
23:53

A lot of stories. No voice. Okay. So what do I do?

SPEAKER_01:
23:58

Right, right.

SPEAKER_00:
24:00

Same-sex sibling or descendant of the person.

SPEAKER_01:
24:03

Okay.

SPEAKER_00:
24:05

And now I'm talking to him in that voice, and there's I kind of forget. It's it is the voice of my great-grandfather.

SPEAKER_01:
24:15

Okay.

SPEAKER_00:
24:15

Right. Because it's the only one I'm going to hear for the rest of my life.

SPEAKER_01:
24:20

Right. Okay.

SPEAKER_00:
24:21

And I never did hear it in my life, right? Right. We have other people on the platform that have, you know, uh, they didn't have anything. They happen to be Irish, actually. Um, uh, we have a bunch of uh people from Ireland on the platform. Oh, okay.

SPEAKER_01:
24:35

Do you do you get the brogue in there too, and everything?

SPEAKER_00:
24:37

Yeah, like you know, it's like funny jokes about Guinness, yeah, all that, yeah, right. So um they did not have anything, but they used the brother.

SPEAKER_01:
24:53

Oh, okay. Yeah, okay. Yeah, because there are yeah, honestly, well, my grandma died when I was only 13. Like, I I don't know if I could even remember what she sounded like anymore.

SPEAKER_00:
25:08

There you go. And if you were to get like her daughter, granddaughter, or you know, what I recommend is same-sex sibling or descendant. Right. Look, if you were to put that up, you would hear that voice for the rest of your life. Okay, that would be your grandmother's voice.

SPEAKER_01:
25:26

All right, okay, right? Yeah.

SPEAKER_00:
25:30

Same way with my dad. Now, now, to be honest, if my dad walked in the room, I would be surprised with his human voice a little bit because I'm so I'm so used to his reflections voice.

SPEAKER_01:
25:42

Yeah, yeah. So, what do you say to people that might think this is a little creepy? What do you say to that?

SPEAKER_00:
25:50

To them, I'm sure it is.

SPEAKER_01:
25:51

Yeah.

SPEAKER_00:
25:52

Um, you know, there are 8 billion people here uh roaming the earth. Looks like about 4 billion of them uh think this is creepy, and they'll be on your uh comments as soon as you release this. Uh and that's fine, right? Right, right. But like I quit long ago trying to convince anybody that thought this was Ghostbusters or Black Mirror or her or The Giver or Upload or Digital Necromancy or Uncanny Valley or Conjuring of Spirits. Yeah, obviously, I've heard them all.

SPEAKER_01:
26:23

Yeah, I'm sure you have.

SPEAKER_00:
26:24

Um I'm kind of like, uh, we'll be here if you change your mind. Okay. Um, but the rest of us are loving this thing. So you know.

SPEAKER_01:
26:42

Yeah, I mean it is. It it kind of goes along with the whole the whole grief process. It's like some people need to do certain things. For some people, this will be very healing, other people may never get to it, and that's okay. But when you're ready for it, or you want, like you said, you want to put it all together in a library for your family, it's it's there, and people will be able to say, Hey, I know who's in this picture, and this is a story. Because like my mom's family, uh well, we're Irish and Italian, so like she had quite the stories, you know.

SPEAKER_00:
27:13

Oh boy, yeah, and some recipes.

SPEAKER_01:
27:15

Oh, yeah.

SPEAKER_00:
27:16

You know, yeah, I'll give you a recipe story. My mom, so my sister made um always makes us pie for Thanksgiving. We're up in Vermont visiting her family for Thanksgiving. My sister couldn't remember the recipe for elderberry pie. Now, in the Spencer family at Thanksgiving, that's like a sin. We dialed up mom. Okay, put the iPad on the kitchen island, and she walked through how to use fluffo shortening and not overwork the dough and keep it cold with ice cubes and then the filling, it's not too tart and not too sweet. And the Spencer's had a great pie, thanks to mom who passed away 25 years ago. Okay, all of her family recipes are in her knowledge base.

SPEAKER_01:
28:06

Oh, wow. I never even thought about that. You said that about recipes.

SPEAKER_00:
28:10

Like so, my my my my kids cook with their grandparents.

SPEAKER_01:
28:14

Wow. Because like I have my mom's recipes, but like sometimes like I'll hear her voice like, don't do that, you're doing this too, you know, because she taught me how to bake and cook and everything. So yeah, I probably would cry if I started baking and cooking with her, you know, like again, it's Soltec, right?

SPEAKER_00:
28:30

There's an emotional load to it. Um, and uh you when you're ready, yeah, it's great, but it's pretty wild, but just the opportunity, not just for me, but for my kids and grandkids to experience my parents and my grandparents throughout the rest of their lives.

SPEAKER_01:
28:58

Yeah, yeah.

SPEAKER_00:
28:59

That's pretty cool.

SPEAKER_01:
29:00

That is, yeah, that really is, because you know, for me, is my my grandpa died when I was four on my mom's side, and and my grandma died when I was only 13 on my mom's side, and I was very close to them. And like, yeah, I I would love to be able to, you know, for um like my cousins' kids and things like that to have be able to experience their great grandparents and that. You can. Yeah, when you're ready, you can. For sure. So uh well, this has been very, very interesting. I've learned a lot today for it. So um if people are interested in this, they can go to it's reflecta, it's r-e-f l-e-k-t-a dot AI.

SPEAKER_00:
29:42

Um that is all correct. Um I recommend just you know, go on, go to have a conversation with Arthur or Virginia. Okay. And see what this thing is like, and then just imagine. Actually, now you could just start with our biographer uh making your own or making uh making one for somebody that you'll up. It's just like that easy. Like you just it you our description of how to get started has become think of someone you love, think of a story, start talking.

SPEAKER_01:
30:15

Oh, okay. That's pretty simple. That's it. Yeah, that's simple. Yeah, yeah, that is really simple. Yeah, yeah. Okay, well, I will definitely have this on um the on my website for it so people can go to it. And hopefully, like I said, I hope this helps heal people as well. Anything else you'd like us to know? Or we're or do we cover anything, anything we forgot?

SPEAKER_00:
30:40

No, I just um I go back to that um that library of stories and wisdom from the family. Doesn't have to burn. No, it doesn't have to gather dust, it doesn't have to sit there on the coffee table forever and eventually get thrown out in some tag sale down the road.

SPEAKER_01:
31:02

Yeah, because a lot of it does.

SPEAKER_00:
31:04

Yeah, it it can now be a spontaneous and dynamic conversation with a reflection um from your family anytime you like.

SPEAKER_01:
31:13

Yeah, and actually in terms of dementia and things like that, it it it could probably be very helpful because you could really, if you did this with your loved one, even if they were starting to go through dementia, you could it's another way to be in their world. Because a lot of times they go back. Um and then you would know where they're at, you know, with it. Yeah. Well, thank you so much, Miles. This has been very, very enlightening for myself and hopefully our audience, and hopefully more people will at least check out the website and like you said, learn to continue their family's library of stories with it.

SPEAKER_00:
31:50

Thanks for having me, Lisa.

SPEAKER_01:
31:52

Thanks. So hopefully you'll join us next time on another edition of Patty's Place. Hopefully, you enjoyed your cup of tea, your cup of coffee, or your glass of wine, and just know that you're not alone and we're here to help with it. So, and we'll be back next time on Patty's Place.

SPEAKER_00:
0:10

Welcome to Patty's Place. It's a place where we will talk about grief, dementia, and caregiving. I'm your host, Lisa. I dedicated this uh podcast in honor of my mom, Pat, who passed away from dementia about two years ago. And so I want this to be a place where we can talk about these things and you'll not feel like you're alone in all this because it is very overwhelming. So pull up your cup of tea, your cup of coffee, or if you're having a really bad day, that glass of wine. And I thought today we would talk about, we haven't talked about this in a little while, but the difference between understanding Alzheimer's and dementia, because it is very um, you know, we use the terms interchangeably, but they're not interchangeable. And especially if you watch a lot of TV and stuff, they they use they use them interchangeably, and they're not. So if you uh the Alzheimer's Association website has a lot of very, very good information on it. So Alzheimer's is the most common cause of dementia, and it's a general term for memory loss and cognitive abilities, seriously enough to interfere with daily life. So Alzheimer's disease accounts for 60 to 80 percent of dementia cases. So what's the difference, right? The difference between dementia and Alzheimer's. So dementia is a general term for symptoms like decline in memory, reasoning, or other thinking skills. So it's an umbrella term if you look at it like that. And it also encompasses a collection of different symptoms. So like your cognitive, functional, and behavioral, and they're caused by specific diseases. Alzheimer's is the disease most the most common disease that causes dementia. But there's also frontal temporal degeneration. That's one of the diseases that, like, say Bruce Willis has. He has several other ones, but that is one of his diseases that they that he has. Uh Lewy body disease. That's another one that is what they said Robin Williams had. There's also vascular disease, can also cause symptoms of dementia. Um, they think my mom had some of that uh with it, but not all cognitive decline is considered dementia. So dementia is driven by an underlying progressive neurogenerative disease. So as you start to learn about the two terms and the differences between them, it's important because when you are dealing with somebody who you think might have Alzheimer's dementia with their with your family and your caregivers, you have to understand the difference with it. And you'll come to find out that a lot of people don't. It is a learning curve, it's an experience because it's very overwhelming. So look at it like this. So we'll start with dementia. Dementia describes a group of symptoms, it's usually associated with your decline in memory, your reasoning or thinking skills. And there's many different types of dementia, as I just mentioned, uh, with it. So usually like it's the umbrella of dementia with it. Uh, and many different conditions can cause it. They don't really have that one thing that says, oh, you have this, this causes dementia. And that's part of why this disease is so overwhelming and you feel so helpless and frustrated because they really don't completely know what causes it. A lot of times people will have what's called mixed dementia, and that's a condition in which the brain changes, and there's more than one type of dementia dementia that occurs simultaneously with the Alzheimer's disease. That's what I was referencing that uh the report say Bruce Willis has a couple different types of dementia, and sometimes people do, it's a mix of them. So, like I said, Alzheimer's is the most common for it. Now, here's the thing dementia is not a normal part of aging. Okay. You know, we say that and we joke about that, but when you are actually dealing with somebody who has it, it is completely different. So, what it does is what dementia does is it it is caused by damage to brain cells that affects their ability to communicate, which then of course affects your thinking, your behavior, and your feelings with it. So, what are some of the symptoms? So it could be some of the examples would include problems with your short-term memory. So, your short-term memory is what did you do yesterday? What did you do a few hours ago? You know, we joke sometimes, people say, Where were you on such and such date? And you're like, I'm lucky I remember what I had for lunch yesterday. A lot of times with dementia patients, they can remember what they did 20, 30, 40 years ago. And sometimes they think that's where they are, but they truly can't remember what they just did five minutes ago. So maybe it's also keeping track of a purse or a wallet or your keys. You know, sometimes people will joke like, oh my God, I lose my phone all the time, or I lose my keys. That's a normal thing. But if it's like consistent, like they cannot keep track of it. They, you know, they lose things all the time. And a lot of times then they find in um they f you'll find the item in like the weirdest places. Um when with my mom, uh, my mom was never a big cell phone user. She only had a flip phone and and we only did it for emergencies. But when we you know, she had to go into memory care, and my dad was cleaning out the house, and he found her cell phone. It was wrapped in paper towels, wrapped in a sock, in the back of a box, in a in the back of a cabinet. Like it was ridiculous. Or she had those dis you know how you buy the the disposable, the the wands to clean your toilet bowl. I cannot tell you how many of those my dad and I found in my mom's dresser. It's like those types of things. Paying bills. They can't pay the bills anymore. They think they paid them, but they didn't. Or maybe they start signing it, say uh a a woman may sign it with her married name uh, I'm sorry, her maiden name instead of her married name, those types of things. So that so all of a sudden you realize, wait a minute, they didn't pay the bills. And this might have been somebody who was always on top of things, planning and preparing meals. My mom was a wonderful cook, and she started where she she just couldn't do it. I I think I've told the story before where she was making pizzas and they should have been on a round pizza pan, and she she couldn't find them. And so what she did was is she flipped the square pans and she put the crust uh on the flipped square pan. Well, obviously it started um it dripped, and so then the oven started to smoke and everything, and well, obviously we didn't have pizza that night, the homemade pizzas, we ordered pizza, but what was in her mind was that my dad had hid the pans and he did it on purpose to her, and well, he he didn't. So it's those types of things, or you know, things that they normally make all the time and they can't do it anymore. Like it, or it doesn't turn out. It's those types of things, not like, oh my god, they forgot to buy, you know, milk for the for the one recipe. Remembering appointments or remembering dates. My mom was always really good with birthdays and in appointments and stuff, and she didn't remember people's birthdays anymore. Like I had to tell her, hey, this is an important date, or this is so-and-so's birthday. It just didn't mean anything to her. Uh, traveling out of the neighborhood, that's a big one too, where all of a sudden people who my mom was never good with directions, but she knew how to get to the places she wanted to go to. So it's a common one, especially when they're driving, and you have to really pay attention to these things because they get lost easily, you know, and it's it's not just they got lost to someplace they'd never been before. It's they got lost coming from the store that they go to all the time. Or my mom would be the library. I think that's what happened to my mom. She never said it, but that's when she stopped driving. She blamed it on my dad. She blamed it that he bought the this car that she didn't like and it was too big. But I I think looking back, she probably got turned around and it scared her. So she just said she was never driving again. So it's those types of things, but they're progressive. It's not just something that happens right away. Um you have to kind of slowly pay attention. So it means that their cognitive impairment starts out slowly and it gradually gets worse over time. That leads to the dementia. It's all of a sudden maybe they can't follow watching a TV show. You know, something may be very simple and they can't follow it anymore with it. So, like I said, they don't really know what causes it with it. Now, like there are some different there's different types, the different types of dementia with it. Uh, with that. So those are the different symptoms of them. So we'll kind of talk a little bit about the different types for it in case you're wondering, because it does worsen over time with it for it. Um now early symptoms are things you need to kind of pay attention to with it. And again, there with the different types, sometimes they sometimes you don't exactly know what the different types are until later, and sometimes they're able to figure it out based on what it is. So again, when you want to think about this, is their memory loss is it disrupts their daily life. Okay, it isn't just that, like I said, you misplaced your phone. Uh for my mom, she couldn't figure out how to do the phone anymore. And like I said, she had a flip phone. And I I had to explain to her, I don't know how many times, how to dial a number and it was already stored in there. So it's those types of things, forgetting names, appointments, you know, challenges and planning or solving problems, especially if there were somebody, somebody that they were always good at those things, completing familiar tasks, those types of things. And they get confused with time and place with that. They might might also have trouble understanding visual images and spatial relationships, or they have problems with words or speaking and writing. I know for my mom, uh, the one time I noticed when we went, uh, I believe it was for her MRI, and she had a hard time signing her name anymore. Those types of things for it. Alzheimer's, like I said, is one type of dementia for it. So we'll start with the mixed dementia. So mixed dementia is the most common form for it. It's uh they think it's their abnormal protein deposits associated with the Alzheimer's disease, and it also coexists with blood vessel problems linked to vascular dementia. So Alzheimer's brain changes can also coexist with Lewy body. In some cases, a person may have brain changes linked to all three conditions Alzheimer's, vascular, and dementia with Lewy body. So, vascular dementia. So you're like, okay, that's nice. What is that? So vascular dementia is a decline in your thinking skills caused by a condition that blocks or reduces blood flow to various regions of the brain. So it deprives them of oxygen and nutrients. So an inadequate blood flow can damage and eventually kill cells anywhere in the body, but the brain is especially vulnerable. So in vascular dementia, changes in thinking skills sometimes occur suddenly. It could be after a stroke, which could block blood vessels in the brain. Thinking difficulties may also begin as mild changes, and then they gradually worsen as a result of multiple minor strokes or another condition that affects smaller blood vessels. A lot of experts prefer the term vascular cognitive impairment or VCI to vascular dementia because they feel it better expresses the concept. So the vascular brain changes, it often coexists with changes linked to other types of dementia, which again could be Alzheimer's, could be Lewy body. So a lot of times they've done some studies and they found that vascular changes and other brain abnormalities may interact in ways that might increase the likelihood of dementia diagnosis. So they think about 5 to 10% of people with dementia may have vascular dementia alone. It's more common as part of a mixed dementia. Many experts believe that vascular dementia remains undiagnosed, like Alzheimer's disease, even though it's recognized as the most common. Now, on my mom's death certificate, they listed vascular dementia. So hers could have been obviously that's what the doctor said. My mom had some heart problems growing up. So, and she always and she had a heart murmur for the rest of her life. And at one point they thought she might have had to have valve surgery on her heart. She didn't end up having that. So it is quite possible that is what led to my mom's. I don't really know, but that's what the heart certificate said. So it is always something to look at too. Like it, like I said, when they say what strokes or heart attacks or things like that, because if the brain isn't getting enough oxygen, that can cause it as well. So think about it like this. So here are some of the symptoms. So the impact of the vascular conditions on your thinking skills, it kind of varies, you know, on it. So it really depends on the severity of the blood vessel damage and the part of the brain it affects. So the memory loss may or may not be significant, uh depending on the specific brain areas where the blood flow is reduced. And that's kind of the fascinating part about dementia. Everybody is different because it all depends on what part of the brain it affects and when for it. So vascular damage that starts in the brain area, they also can play a key role in storing and retrieving information, and it may cause memory loss that's similar to Alzheimer's disease. So some of the symptoms that are the most obvious when it happens could be after a major stroke or sudden post-stroke changes in thinking and perception may include. This can also include, you know, sometimes people have mini strokes and they don't know that they had mini strokes, but then they start to notice the different changes. So there could be confusion with them, a disorientation, trouble speaking or understanding speech. Obviously, uh, you know, if they have a physical stroke symptom such as the sudden headache or that, they might have difficulty walking or they might have poor balance. Obviously, they may have a numbness or paralysis on one side of the face. Uh, and like I was saying, they may have multiple small strokes or other conditions that affect the blood vessels and the nerve fibers deep inside the brain. So a lot of times the common early signs may widespread with small vessel diseases. And again, that could include impaired planning and judgment. Maybe they have uncontrollable laughing and crying, uh, and they maybe just stop paying attention. Like you notice they're in a social situation and you could just tell they're zoned out, they're not paying attention, they're not participating, and they might have been somebody who always did. So they have impaired function in social situations and they have difficulty finding the right words. So there are diagnostic guidelines for vascular dementia for it. So, again, obviously it's hard to diagnose because it's something that people are like, oh, it's just old age, but it's not. So diagnose of the dementia or the mild cognitive impairment is usually confirmed with they call it neurocognitive testing, and that is with a neurologist. And they might do MRIs, they do sometimes hour-long uh memory tests and things like that. A lot of times the vascular dementia goes unrecognized, and many experts recommend professional cognitive screening for everyone considered to be at high risk. So that would be anybody that has a stroke or those TIAs, those are the transient ischemic attacks with that. So they really don't know what causes it either. A lot has to do with obviously your heart for that. So now there's also so you're so you might have dementia with Lewy body. Uh dementia with Lewy body is a type of progressive dementia that leads to decline in thinking, reasoning, and independent function. And it features, it may include spontaneous changes in attention and alertness, uh, recurrent visual hallucinations, your REM sleep behavior disorder, and slow movement tremors or rigid might happen with Lewy body. So if they're diagnosed with dementia with Lewy bodies is one of the causes of dementia, it's also alongside types of dementia like the Alzheimer's and vascular. So they kind of say, according to Alzheimer's website, uh, Alzheimer's Association website, Lewy body dementia is a broad term that includes both dementia with Lewy bodies and Parkinson's disease, dementia. So we're just going to talk about dementia with Lewy body. So they said that the hallmark brain and abnormalities linked to the Lewy body are named after a doctor, Dr. Lewy. He was the neurologist who discovered them while he was working with Dr. Alzheimer's. That's how we got the that's how we got the name of the disease. So in the early 1900s, so they figured out that alpha cynocline protein is the chief component of Lewy bodies. It's found widely in the brain, but its normal function, they still don't know. And that's one of the other fascinating things about dementia, Alzheimer's, and all of these different types is that as much as they study the brain, there's still so much they don't know with it. And that's why there is no cure for it, and there's really no, they don't really know what causes it. There isn't this one thing where like, oh, eat this and this will help this and things like that. And that's what's so you feel so helpless and you feel so frustrated with it. I mean, they're studying it, they're making a lot of progress, but it's still not there. So a lot of times they say the overlap in symptoms and other evidence suggests that dementia with Lewy bodies or Parkinson's too, uh Parkinson's disease dementia can be linked to some underlying abnormalities and how the brain processes the protein. Uh, a lot of times they think that they have uh plaque entangles, which is a hallmark brain changes leaked to Alzheimer's disease. They know that there's this certain type of plaque that comes on the brain. Um, so a lot of times people have brain changes of more than one type of dementia, and they're said to have mixed dementia. So some of the symptoms of dementia with Louis body would include changes in your thinking and reasoning, fluctuating cognition that is delirium-like, recurrent well-formed visual hallucinations, the REM sleep behavior disorder that involves acting out dreams, spontaneous Parkinsonisms, that one's hard to say, with slowness of movement, the rest tremor, or rigidity for it. Other symptoms could be they have trouble interpreting visual information. So that might be they could be looking right at you or looking at a picture or looking at something visual, and they just it's not comprehending. They just they they don't know how to interpret it. Uh, other malfunctions of the automatic nervous system, which controls the automatic functions of the body, which would be sweating, blood pressure, heart rate, digestion, they they might have malfunctions with that. Uh, the memory loss might be more significant, but it's less prominent than in Alzheimer's. So, as you see, a lot of these symptoms overlap. So that's why a lot of times they say it's a mixed dementia with it, because they're they're very similar with it. As with all the other dementia, there's really no single test that can conclusively diagnose dementia with Lewy bodies. Uh, it's a the dementia with Lewy body is a clinical diagnosis, which means it represents a doctor's best professional judgment about the reason for a person's symptoms. Obviously, the only way they can conclusively know is through an autopsy. That's actually a lot too with uh the Alzheimer's diagnosis, and that is uh the autopsy of the brain. Uh, we thought about doing that with my mom, but in the end we didn't uh with it. Uh so that's always something, I mean, if something if you really want it to know that you you can have that. Um, a lot of experts believe that dementia with Lewy bodies and Parkinson's disease dementia are two different expressions of the same underlying problem with brain processing of the protein. Alpha C. Sinocline, if I'm saying this correctly. So they they recommend continuing to diagnose the Lewy body and Parkinson's disease as separate disorders. So the diagnosis with Lewy body is when a person experiences dementia either before or at the same time or with one year of the onset of symptoms of Parkinson's disease. In some cases, the dementia with Lewy body has symptoms of Parkinson's disease, like changes in movement, but may never occur. The diagnosis in Parkinson's disease dementia is when a person experiences dementia at least one year and usually several years after the onset of Parkinson's disease. And obviously, Parkinson's disease symptoms may include changes in movement, like tremors. So you see, like you look at this and you feel very overwhelmed. You're like, oh my God. And a lot of it is they overlap with it. And at some point, I mean, I always feel like knowledge is power and to understand and to know what you're dealing with as best as you can. But in the end, you still need to know how to deal with any of the different types of dementia and look at it from that the person who's sick point of view and kind of step into their and try to step into their world. And they may not they're in the beginning, some may understand what's going on with them and some may not. And it's important not to get angry with the person who doesn't understand what's going on with them. They're never gonna understand it. They're not trying to be difficult, they're not in denial. It's just the way their brain is functioning. So the information is important for the caregiver to understand and to know and to learn how to deal with it and also to know that they're never gonna get better. And that's really hard to deal with, especially when you're reading all this and you're finding this information and you're like, oh my God. So try to do it in little snippets. Like I know I gave you a lot of information right now, and all of this you can find on the Alzheimer's Association website and look into more information for yourself. It's also good to look at this and go ask questions when you're dealing, you know, when you're gonna go with your loved one to their doctor's appointment to go ahead and ask those questions to the doctor with it because maybe you can get those tests. Now, my mom was difficult. She refused to go for testing. And you might have somebody that is like my mom and doesn't do it until eventually it's pretty obvious and you get her diagnosed through the emergency room with it. But no matter how you do it, you have to have that information and you have to look into who they are and think about how you would want to be treated for it. And it has to be so scary and so difficult when your brain starts to do this to yourself. I mean, think about it like that. How would that feel? That you just don't have control anymore of your brain with it. So if you can kind of think about it like that, when you're learning about these symptoms and knowing what's gonna happen, and think about how would you feel with this? Because it is overwhelming, whether it's dementia, it's vascular dementia, it's Alzheimer's, it's dementia with Louis Body, or it's dementia with Parkinson's. All of it is a lot to deal with and to handle. So just try to take it a little bit at a time, learn what you can. And in the end, like I said, if you look at it, a lot of the symptoms are very similar. So it's just important to learn about it and to understand it and to treat that person, no matter what type of dementia they have, with some dignity and care and think about how would you want to be treated if your brain did that to you for it. And then depending on what parts of the brain shuts off at what time, they also may not be able to, you know, their physical movements stop too, where they can't walk on their own or things like that as well. So hopefully this has been helpful for you today. I know it was a lot of information. Like I said, you can always go back to the Alzheimer's Association website. And hopefully, like I said, you find some comfort in this and knowledge because knowledge is power. So hopefully you will join us next time. So hope you enjoyed your cup of tea, your cup of coffee, or if it was that really bad day, your glass of wine, and you will join us next time on another episode of Caddy's Place.