HOLLYWOOD & THE HOLY GRAIL OF DEMENTIA RESEARCH: Highlights from my time at the Alzheimer's Summit

Why I’m At The Summit

SPEAKER_04 0:00

Real life caregiving happening right now. So I'm in Anaham, California at the National Alzheimer's Association Community Leaders Summit, which basically is a really fancy way of saying, hey, everybody who volunteers heavy and hard in the streets in their respective states, y'all come out here and for a couple days, we're going to meet with the staff at headquarters and at the top level of every state Alzheimer's chapter. We're gonna give y'all the inside track to the studies, the fundraisers, how we doing. This is where we get our measurables of how is it going in the street. Are we winning or are we losing? And I can tell y'all, we are winning. We are winning more than I ever thought. In the middle of attending my first um community leader summit, I get a text from Zeddy's caregiver that today she had some big dark brownish mucus coming out of her throat. She isn't walking, and she's not as alert. Right now, this is what's happening. So I step out, make some calls, I call her doctor, I call her nurse, and one of them answers. And that's the beauty. That somebody answered and gave me the information I needed to convey to the caregiver that what's happening with Zetty is okay, and that we don't need to go to the emergency room right now. We can just hold tight and wait. She told us a few things to do, take her blood pressure, keep her hydrated, but we can at least pass through till tomorrow, which is great, because I will be back with Zeddy tomorrow. It's a lot easier to make a decision when I can see her in the face. Parenting up Caregiving Adventures with comedian J tomo is the intense journey of unexpectedly being fully responsible for my mom. For over a decade, I've been chipping away at the unknown, advocating for her, and pushing all kinds of awareness on anyone and anything with the heart. Caregivers knowing OD and village members, just willing to prop up with caregivers when you are in the right place. Ah, this is good. I hope you enjoy my forecast podcast. Okay. Today's supporters shout out comes from Apple Podcast. An awesome episode with Jet. Jet seemed like an amazing grandson who returned the love of his grandmother by being her caregiver. What a great example to us all. That was from D. I agree. And thank you so much for listening and commenting. If you want to receive a supportive shout out, go to Apple Podcasts or YouTube, leave a comment, leave a review. You know how we do. Today's episode, Hollywood and the Holy Grail of Dementia Research. Highlights from my time at the Alzheimer's Summit. I have registered for the 2026 National Community Leaders Summit. That means I am super official now as an advocate for Alzheimer's. Let's go. Just realized that they wrote my reason for being so passionate about Alzheimer's. On my badge. Zeddy is on my badge. What? I am walking in for the first time to the Alzheimer's shop. Birch Gear. Swag. So the love is tremendous. All the little badge stickers, you know, most conferences, they would give them to you when you register. But here, we let you come to the board and pick which one. Are you an advocate? Are you on a chapter board? Are you a community awareness champion? Are you a summit speaker? So technically, see, I could just go over here and grab the summit speaker thing and put it on here. I'm not a summit speaker. But that's just how much love and trust is in this group. I mean, you could decide to just trick out your badge and not even me telling the truth.

The “Share Your Why” Wall

SPEAKER_01 5:51

I'm just happy to be here at this wonderful event, the positive energy, the good vibes, and the smiles, especially Jay smiles. What's up, girl? Share your why.

Brain Health At Work Program

SPEAKER_04 6:04

So members. Attendees of the Alzheimer's Community Leaders Summit 2026 will sign this board sharing their why. I'm sure something will make me cry. Future generations, that's nice. My daughter's future. My husband gone too soon. But my mom, no, I'm good. But thank you though. But my mom, Zaddy, early 60s, still working, still thriving, or so we thought. And then it ended. So real tall Zenny, she's my wife. The energy and excitement in this room is I could bite it. I could chew it. I could taste it. The people in here aren't depressed and sad or defeated by the notion of Alzheimer's. They are all in here acting like we're about to throw a big party and have a picnic because what we're doing as the community leaders summit participants is we locking arms and helping each other get the strength we need to kick off. Yep. Yep. Y'all better watch out. I'm finally meet some new soldiers. Okay, I'm before the board. A lot of participants have said really cool things. This person right here who said reading is what helps their brain helps. That could never do it for me. Water, puzzles, yoga, workout, sleep. At least I know that sleep is supposed to happen. I'm not ever gonna start reading, but sleep, sleep. I wrote on yellow because yellow is the is the color, it's the flower color that says you're currently a caregiver. I wrote on yellow to shout out Zeddy. I used purple because that's the Alzheimer's color. And I said that I engage in nature 365. Might be running, jogging, scuba diving is my favorite thing. Um, just sitting outside, riding my bike. It's something about fresh air, and whether it's rain coming down on my face or sunshine making me perspire, I feel more alive. Okay, parenting up family. I am here with Carrie, and she's gonna tell us about this really cool brain health at work program that's coming.

SPEAKER_03 9:43

Brain Health at Work is coming April 2026. It is a way for employers and workplaces to promote brain healthy activities and programs and wellness to their employees. Brain health is important at any age, and so we want to get to as many people as possible to make sure they're taking care of themselves, which includes taking care of your brain.

TrialMatch For Clinical Trials

SPEAKER_02 10:06

Hi, everyone. You can learn more about participating in research on Trial Match. It is a clinical trial matching service, or as I like to say, it is match.com for clinical trials.

SPEAKER_00 10:25

Brain health does not live in a science lab. It lives in how we live. It lives in how we eat and how we move and how we sleep and how we connect. It lives in doctors' offices, it lives in workplaces, it lives in communities like this one. We can do this, make a huge difference.

Isolation, Monitoring, And Hope

SPEAKER_05 10:46

As I was in this study, I kept saying, I don't know what they're gonna see in my brain. I don't know what's what they're gonna find out, but I know how I feel. This is one of the biggest honors of my life, and that's because um I I'm here because I was a participant in the U.S. foreigners study. And some people may not have heard about it, but it was the largest study of its kind. 2,111 people across the United States were in this study. They followed us for two years in every way. They followed us. I was in the structured group. We had a lot of commitment. There was another side of the group, they split it in two parts. One side was structured, the other part was self-guided. Self-guided just got the information. I had the structured book where we had meetings to go to regularly, we had help constantly. The thing about it is once that happened, I just took everything they had to give and I learned what they taught us. And immediately, I say within four months, I saw a measurable difference by doing just lifestyle changes. Lifestyle changes alone. Whenever I went to my doctor and he saw the numbers after being in the pointer study or while in the pointer study, he would go, Oh my God, are you guys doing this with lifestyle alone? I'm like, Yes, that's that's all we're doing. We changed our lifestyle. We move regularly, we changed what we eat. We also started doing brain health uh exercises, and we did a lot of uh it was also about uh meeting other people and talking to people. That's a big part of it because isolation causes your brain to shrink, and they know that. The other thing we did was health monitoring. So we had to just keep up with our blood pressure. Make sure, you know, that's one of those things that you don't know is bad until you check it, you know, until it turns into something really bad. So we learned to keep up with that kind of stuff. It was um was one of the biggest things in my life, changed my life, changed who I am, made me into a much more happy and positive person. And everything that I got from U.S. Pointer, I just feel like I want to share it. I want everybody to know that there's hope, that we don't, we have some control over our health future. We have a lot of control over our health future. And we could take control and try to keep keep this disease away because this is all about prevention and not only prevention, but you just want to do it anyway. That's right. That's right.

Alzheimer’s Risk In Black Communities

SPEAKER_04 13:27

Thank you so much, Phyllis. And I love that you said it even made you maybe a happier, more joyous person because I'm Jay Smiles. My podcast is the Parenting Up Podcast in our community. We lead with levity because we believe Zach Hume kills. And I can't wait to have you on the podcast.

SPEAKER_05 13:47

You promise that you're gonna do it. I'm doing it. I look, I'm looking forward to it. I know that this disease hits the black community at two times the rate of our white counterparts. So I try to do whatever I can to get to the black community, make the my people understand that we can do something to keep this disease away. Thank you. Thank you.

Celebrate Every Single Win

Subscribe And Final Thanks

SPEAKER_04 14:09

That's bigger than I am. And it's in fancy lights. Because we're in Anaheim, you know, LA Hollywood, the whole nine yards. And this guy's in my video, but I'm gonna keep it. This is the biggest thing. This whole sign is way bigger than I am. Now, some of you might laugh and say, Jay, that doesn't take a lot. Anyway, hashtag N-A-L-Z. The snuggle up. I gotta tell you, the Community Leaders Summit of the Alzheimer's Association is a straight, multi-day, multi-tiered party. I have never seen, experienced, or heard of this much celebration and revelry while trying to fight a disease. Nobody is sad, nobody is depressed, all of the crying are tears of elation. The smallest, smallest of wins or breakthroughs, or suggestions of maybe having a cure. Get these people fired up. The one thing I know more than anything after experiencing this conference is celebrate the wins. No matter how small, they could be molecular wins that don't even matter to other people. Maybe they just matter to you and your carry. You and your dog. But if it's a win, you celebrate it. That is what I have learned more than any damn thing else. 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 audio platform. Either way, wherever you are, subscribe. Come back. That's the way you're gonna know when we do something next. Y'all know how it is. I'm Jay Smiles. I might just drop something hot in the middle of the night.