Who Fills The Gaps When Systems for Caregiving Fails: Alter Dementia Summit Recap

Welcome From Altar Summit

SPEAKER_02 0:00

What's up family? I'm at Altar 2026. It is fantastic. Once again, Dr. Phaeron Epps and her team are putting on the fabulous Altar Summit. And what does that mean? That means caregiving, dementia, research, and the faith community are all coming together to figure out how we can be supported and how we can beat this thing. And a little bit of a surprise is this time, y'all, they had me come back not as a participant, but as a host for the opening ceremony Gospel Explosion concert. Alright, get ready. Parenting up Caregiving Adventures with comedian Jay Smile is the intense journey of unexpectedly being fully responsible for my mama. For over a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone in any thing for the heart. Caregiver movies, OD, and village members are just willing to prop up a caregiver. You are in the right place. Ah, this is ready. I hope you enjoy my daughter's podcast. Okay. Today's supporter shout-out comes from YouTube. JP G P hyphen B2B. My great-grandpa passed February last year. His wife, who has stage four cancer, is flourishing. We've been watching my granny like a hawk because the bond her and my grandpa had was definitely made by God. It's definitely been hard to lose a husband. Mine and I are 26, and even the thought of it saddens me. That's heavy and that's deep. Thank you so much for sharing that what you're going through with your loved one and what you witnessed had you thinking about the possibility of what might happen in your lifetime. Take a breath. Try to relax. Don't borrow worry from the future. Don't, because trust me, life will give you enough to worry about on its own. Now, if you would like to be the recipient of a supportive shout-out, you know what to do. Leave a review on Apple Podcasts or YouTube. We're parenting up everywhere, baby. Altar 2026, we are having us a good time. It is hard to have a good time when you're talking about dementia, but Dr. Phaeron Epps and her team know how to put on a party. I mean a big party. We are at Impact Church, yet again in Southwest Atlanta. Shout out to the SWATS. It's a three-day summit, y'all. Thursday, Friday, and Saturday. They got big time sponsors. Where is it behind me? Like Eli Lilly, A-A-R-P, and NIH, and a bunch of whole people that you'll see all over the screen. But do you know in these times how difficult it is to have major government and private and research and biotech all sponsor you at the same time? That's because Dr. Epps is about that life and she is fantastic. So now, what is Altar Summit, Jay, and why is it different from any other Dementia Summit? Well, at Altar, the whole premise is to merge faith community. The faith community, people who believe in a higher power, divinely led, and then get those people educated on dementia so they can go back to their home churches and share what they learned. So they're not waiting on doctors, they're not waiting on hospitals, they're not waiting on the government. They're doing it themselves, and they're doing it enriched in the faith that brought them to be a community in the first place. So, like, how dope is that? There are seminars, there are music concerts, there are how-to's, there are QA's, and there are also moments where you just learn from people who are in the trenches either in research, that's a thumb, or um in the advocacy of the hospitals. And speaking of research, let me tell y'all something. Dr. Epps is on a tear to get us more involved in clinical research. Look at here, family. A part of the reason why we don't, I know, go sign up for clinical things. Yes, the Tuskegee Simpless Experiment. I know, I'm from Montgomery, Alabama. And Henrietta Lex. Like, hey, her stem cells are still the reason why people can have brain surgery and heart implants. I know, I get it. I understand as much as I can why you may be apprehensive, but guess what? If we don't participate, we meaning people of color, especially black women, maybe the reason why we are getting diagnosed in larger numbers is because none of the precursors and parameters actually match our DNA, right? Like we the only ones that okay, black people are the only people that can have sickle cell anemia, but it took research to figure that out. We take it for granted now. We have to get in these research trials while we're healthy, and especially if you've been diagnosed with mild cognitive impairment. Those are the two groups of people that actually mean the most for these research studies. You see what I'm saying? Like, how can they make a pill for us or make a treatment for us if they don't know our bodies? All right? So do that. Another thing that means a lot to Altar and Dr. Phaaron Epps this year is the youth community. They have a youth summit. If you know anyone, you can go to alterdementia.com and sign up for the youth summit. It's for people that are 12 to 24 years old. But then you know, if you're 11, or you know somebody that's 11, I think you can get in. The point is, way too often, young people are asked to step in to quote unquote, sit with the grandmama or go with them to the doctor's office, or what in the store for your grandmama because she can't go in anymore. And we give them adult responsibilities without giving them adult understanding. At the youth summit, they break it down. They break it down in real scientific ways, but that are bite-sized pieces for people at that age to understand what is happening to their mom or dad or grandparents. The other thing that's a really big deal to Dr. Epps, brain health. Most of my life, everybody told me to take care of my heart. At school, at church, Jay, don't eat pork every day. Or if you eat it, don't fry it all the time. Shout out to pork skins, okay, and pickle pig feet on the counter. Don't ask me why. I know about that. Just blame it on my grandfather. But those things were drilled into us. If your left arm is hurting, you might be having a heart attack. Like we learned that from the community. Now it's time to do the same thing for our brain. Y'all, it's two ways to cure dementia. One is to have treatments and medication that reverse the disease. The second is to avoid getting it. If X percentage of us are being diagnosed with dementia every year, if we reduce that by 50% within five years, that is the same as curing the disease. If I can keep myself from getting it, even though my mama and her daddy had it, and all her daddy's siblings, okay, not all. Anyway, I'm a comedian, y'all know. I mean, more than my granddaddy. And brain health is how you can avoid getting dementia. Top thing, I just heard him say. Okay, a top thing I just heard him say that will help you with brain health. I'ma whisper this so you take me seriously. Go to sleep. Take your ass to sleep. The body is the most magnificent machine ever invented. And if you go to sleep, it will repair a lot of things itself. So many times, by the time we get in our 50s and our 60s, we are so sleep-deprived our bodies cannot even repair itself anymore. So go to sleep. The other thing I heard somebody yell is sex. Now, listen, I'm not a doctor. But I can neither confirm nor deny. But I do know that many people say sex is very pleasurable and it makes them happy. And happy and relaxed, and then they go to sleep, right? So maybe that'll help you not get dementia. Dr. Epps did not condone that second part, but I did hear it from somebody, from somebody in the audience. I cannot wait for you all to see more about this conference. If you have an opportunity to come next year, please do so. It is a very intense community environment where everybody is locking arms and saying we're gonna beat this dementia thing. And along the way, we're gonna stay prayed up and we're gonna stay positive and we're gonna pivot into whatever it takes to be a caregiver and an advocate in our communities. Man, what is better than that? And besides that, Atlanta is dope. All right, now y'all are about to get something special. We are gonna show you a portion of the hosting set I did. Yep, that's right. They actually asked your girl to come in and host and do a comedy set before the gospel explosion. I tried to sing, they asked me not to. They said keep it to the jokes. I hope you love it. No like the middle. I don't know what else I got. What about you do? Oh you don't know. What do you mean? Don't make that too. That's the tile that quick tile that needs to be. That person has now. So um what to argue? Between the lines in the way that we, as the mama or the auntie, we might not be able to articulate. So shout out to you and everybody. I know I was a youth caregiver and didn't know it. How many of the people were youth caregivers and didn't know it? They were like, so I don't even like her. Like, why I gotta I planned on there to get orange on her orange tree if she's my dog. And so now I was supposed, you know what I mean? Like, anyway, I did it because my grandmother, but whatever. I ain't like it. Um, so those are things that we really want you to encourage people that you know between those ages to participate in the youth summit. And again, I want y'all to donate to what?com. Alterdementia.com. That's so in your program book. It's also in your program book. And if you just give me the$20, I swear I would give it to her. Now don't follow me around in the parking lot. I told you. I would give it to her. Now, has anyone heard about the push for brain health?

SPEAKER_03 16:02

Yeah.

SPEAKER_02 16:03

Yeah. Do y'all remember the push for heart health? They've been telling us about heart health louder and longer. But everybody knows that bacon is probably not good for your heart health. That means I don't eat it. I was just saying. Somebody's just about knowledge, right? We gotta make you aware, and then we work on the execution. With brain health, somebody tell me what you think. Like, if there's a number one thing to do for your brain to keep it healthy, what would you think it is? Anybody? Use it. Okay. I'm gonna give$20 to author on your behalf because that's she didn't have the car. Sleep. Just go to sleep. Right now. Talk right now. But seven to eight hours. You might not get it every night. But trying to let two months go by when you only got four hours. The best thing you can do for your brain is to go to sleep. And that's great. Uh oh. Well, okay. When I say best again, I'm not a resort doctor. I'm trying to tell you the things you can do that ain't gonna cost you nothing if you could just start going tonight. Now doctor not gonna get up here, they're gonna have a long list of bullets. But a comedian doesn't know nothing about. I would like to say that sleepers in there. It might not be number one. Let me say quite number one to me. I'm thinking, oh, that doesn't cost me anything. Let me go ahead and get number eight. And we'll move to number one. I was playing like three card money with it. Anyway, anyway, y'all feel what I'm saying. Also, your diet. Not dieting like you gotta lose weight, but what are you eating? What types of things are you eating? The Mediterranean diet is often very much so celebrated, right? So it doesn't mean you gotta cut out meat, doesn't mean you gotta stop eating all forms of carbs. It is which carbs and which meats. And so you can just move a Mediterranean diet and just try to get some. How y'all feel about that? Who's protect? Who's from Alpha? Down the street.

SPEAKER_00 18:44

Thank you all so much. Thank you so much.

SPEAKER_02 19:23

She founded the major dignified academy. Tell us why you are here.

SPEAKER_01 19:30

I am here, first of all, I am also founder and castor of Georgia to the Cross Ministry. And we are based out of Chicago, Illinois. I am a partner of the Altar program. Have been a partner for four years. Last year was my first time coming to the summit, and I was a vendor, and I was also one of the speakers, together with my business partner, Michelle Mason. And we talked about my journey. My journey with caring for my husband. So I'm here this time to hear my granddaughter who helped me to care for my husband, her grandfather. She's one of the speakers on one of the panels. She attends North Carolina A T. And y'all brought her in so she could tell about her journey with her grandfather. So I'm here to hear that. And I'm here to get information. Now I know why I'm here because I need to get information for a company that's looking for resources. They live right here in Atlanta and they came on my support booth this evening. And they're looking for help that they cannot find. But I know we have it here at the altar summit. So I'm gonna get that information so that I can share with this family.

SPEAKER_02 20:46

Fantastic. And family, I what I gotta tell you is I had the pleasure of sharing the green room with uh Pastor Janet, and I heard her anointed support of one of the people on her support group call, what she was saying, how she was able to ebb and flow between giving them a little bit of hard medicine and giving them a soft hug. You are wonderful. I'm so happy that Chicago is sharing you with Atlanta for these two or three days. Shout out to HBCU's your granddaughter, and I can't wait to hear what she has to say. Bless you. Thank you so much.

SPEAKER_01 21:22

I enjoy you also. You up there? Things get funny. Things get funny. I can tell you some stuff you can add to your monologue. We're gonna have you on our podcast and get it direct. All right. Thank you so much. Thank you so much. God bless you, girls.

SPEAKER_02 21:39

Listen, Herb Caldwell, the Mama Joe Project. Now, you are a speaker. And you are to speak at a Dr. Pharon Epps summit means you have already told a story that was compelling and useful. So, who are you and why are you useful?

SPEAKER_04 22:00

Well, um I depends on who you ask, but in this context, uh first of all, so happy to be here at the uh Altar Dementia Summit. Happy to be here with J Smiles. Um, I'm a film producer uh and a film producer of a documentary film called My Mama Joe Hope and Help. And what we've done is use storytelling, the power of storytelling, right, to put a face to caregiving Alzheimer's and dementia. So Mama Joe is my mother, right? And so um just telling her her story and the journey of going through that, and then we use it as part of educational outreach, right? Connecting folks to information, uh, resources, and then social networks. It's important that people don't feel alone, right? When you're in a room with other folks. So that's who I am, that's what I do.

SPEAKER_02 22:39

Okay, where can people see some of your work? The film or snippets or the film is.

SPEAKER_04 22:48

Yeah, so the film is streaming on pbs.org. Just put my mama joe in and then it'll come up.

SPEAKER_02 22:53

Look at that, pbs.org. Right, yeah. Love it. Some people trying to kill it, but I love PBS.

SPEAKER_04 22:59

Well, it was the perfect venue because it's the most accessible. Yes. Especially in rural areas. Everybody ain't got however much y'all point y'all paying for Netflix or stealing. Right?

SPEAKER_02 23:10

So Did you say your where'd you grow up?

SPEAKER_04 23:12

Uh, Illinois. I've been an Illinois resident all my life. I live 15 minutes from downtown St. Louis.

SPEAKER_02 23:16

Ah, yeah, that's why you over here got this slick talk. Go keep going. We love it. The Page It Up Podcast, we lead with levity and we believe humor heals. So the only way we can get through this is to laugh.

SPEAKER_04 23:28

No, it's uh it's it's pretty amazing. So you can watch it there, but what I love is we do these things called community engagement forums. Okay. Usually in a movie theater. So we show the film and then we have uh a panel of experts where the audience can ask questions. We have a mini info fair. So folks in two hours, folks will be able to connect with something they see, something they hear, and then real materials are in their hands.

SPEAKER_02 23:49

Okay, Herb, you don't you don't have to beg anymore. My God, everybody here is just begging me to come to the next version of the Community Watch Summit. We just saw the things, people gotta talk things. I'll be there, you know, hold it together, bro.

SPEAKER_04 24:05

Listen, I was just in Cobb County last week, had an amazing time. Uh, and tomorrow we'll be in Milwaukee, Wisconsin. Where do you want to come? Because we we go quite quite.

SPEAKER_02 24:13

All of them.

SPEAKER_04 24:13

You got it.

SPEAKER_02 24:14

Y'all hear that. All right, so and we're standing on holy ground. So he has to tell the truth at least. I must at least tell the truth, kind of.

SPEAKER_04 24:25

At least. Yes. Kind of.

SPEAKER_02 24:27

I would love to come bring the podcast, uh, parenting up podcast community, make sure that it's a part of the materials that we put out because you're right. So often we watch something, we read something, and we don't know what to do with it, right? The dementia piece is it's the new hot, it's the new sexy sizzle disease. But that doesn't mean people know what to do with it and how to manage when somebody you love has been diagnosed. So, first of all, congratulations and thank you for the Mama Joe project.

SPEAKER_04 24:59

Two things quickly.

SPEAKER_02 25:00

Yeah.

SPEAKER_04 25:00

Those things we can do, uh, engage the power of music and the power of laughter.

SPEAKER_02 25:07

Listen, you don't want me to sing. I got a mean playlist off, and I can bring laughs.

SPEAKER_04 25:14

Let's bring the laughs because sometimes that and our faith is what gets us uh gets us. Yes.

SPEAKER_02 25:21

Well, thank you so much. Thank you for having me.

We Are The Gap Fillers

SPEAKER_04 25:22

All right, amazing. All right, till the next time.

SPEAKER_02 25:24

Yes. The snuggle up. Altar 2026 blew my mind. Why? How, Jay? Well, there are so many people out here doing the hard work that may or may not come across your social media feed. You may not live in the communities where they are, but there are people from all over the nation that I got to meet today. From St. Louis, from Chicago, from LA. That's crazy that we are all doing our part. Usually volunteering. Putting our heads together and fighting and fighting and fighting because what somebody that we love went through dementia or Alzheimer's and we did not have what we needed. So what did I get from here? Is if they don't have what you need, then you need what you need. We are the gap filler. Whatever is missing in the system, we can fix it. That's it. We're humans and we badass. Everything that's right for us with this world is because some humans decided that's enough. I'm about to take this shit up. Thank you for tuning in. I mean, really, really, really thank you so very much for tuning in. Whether you're watching this on YouTube or if you're listening on your favorite podcast or audio platform. Either way, wherever you are, subscribe. Come back. That's the way you gonna know when we do something next. Y'all know how it is. I'm Jason Miles. I might just drop something hot in the middle of the night.