Julie Rogers: 0:06

No one ever said life is easy, but I believe by giving yourself permission, you will find you have more control over your life than you realize. I'm Julie. I hope you will join me by taking responsibility for yourself, by only controlling the things you can and letting go of the things that you can't. By doing this, you will have discovered the secret to having happy, healthy and more fulfilling relationships. This is Nearest and Dearest Podcast. I'm Julie Rogers and you are list ening to season four, episode two Podcasthon +

Julie Rogers: 0:53

Alzheimer's Association = Worldwide Awareness. So I was invited to participate in this global effort by the world's largest podcast charity initiative movement called Podcasthon. The visionary co-founders, Jeremie Mani, a French businessman with over 20 years of experience in the digital industry, began reflecting on how he could use his skills to make a meaningful impact. He wanted to create something that would mobilize thousands of people for a greater cause. Yves Delnatte, a seasoned businessman and investor with a background in business development, whose journey has been marked by a commitment to leveraging businesses as a force for good, led him to co-found along with Jeremie. They came together to build Podcasthon as a volunteer-driven initiative aimed at uniting the power of podcasting with the needs of charities. Because traditional fundraising methods like charity galas, marathons and auctions have their limits due to needing large budgets, exclusive access or short-lived engagement. This reality motivated them to seek another way for charities around the world to reach new audiences and create long-term connections. Podcasthon started in 2023 with 300 French-speaking podcasters. It grew to over 400 in 2024, and now it is expanding worldwide. Their dream is to see Podcasthon become a global tradition, uniting thousands of podcasters in dozens of languages each year. Quote "we believe that podcasting for good should be more than a buzzword. It should be a movement. By leveraging technology, storytelling and community engagement, we hope to inspire millions of listeners to care, to act and to make a difference, one podcast at a time. End quote. The goal is to convince as many podcasters as possible, regardless of their language, to dedicate an episode on their show to a charitable organization of their choice. By doing so, they are promoting charitable engagement in all its forms all around the world. I'm thrilled to be one podcast out of 1,600 podcasters from 45 countries that have made a commitment to showcase our personal charities with the hope of educating, connecting and a sense of community that offers light and love. As you can tell from the title of this episode, the Alzheimer's Association is my personal choice for Podcasthon.

Julie Rogers: 4:40

I know some of you know my story but for those who don't, I want to take a moment to share with you why I got involved with the Alzheimer's Association. I lost my beautiful mom to Alzheimer's in 2019. She battled this horrific, fatal disease for over four years. She was 84 when she passed. My family, along with our mom, watched helplessly as she slipped away from herself, her family and her friends. It wasn't until my family had to make the gut-wrenching decision to place her into memory care that I learned more about the Alzheimer's Association Central New York's chapter. I was grateful for my first meeting in the Samaritan Keep home in Watertown, along with other caregivers who wanted to know more about this disease. I received valuable information. A guest speaker, a daughter who spoke about her caregiving journey that she experienced with her own mom, helped connect me in realizing I am not alone. From then on, I would reach out to my local chapter whenever I felt the need to vent my own emotions or inquire about other ways I could connect with other caregivers in my own community in a private, non-judgmental setting. It was a lifeline for me.

Julie Rogers: 6:36

Fast forward to just a couple of years ago. I was ready to share my caregiving story. As a volunteer for the Alzheimer's Association, I have done walks to raise money for this cause, and as an ambassador for AIM Alzheimer's Impact Movement, which fights for funding in Washington DC through legislation for the rights of loved ones and caregivers who are battling this fatal disease. I'm also a community representative that attends local community events, which allows me to raise awareness of the free association programs, provide basic information and connect people with services in their own communities. I want to honor the memory of my beautiful mom by continuing the fight to end Alzheimer's and all other forms of dementia, so that no person, family or community would ever have to endure watching their loved ones battle this horrendous and fatal disease. I would like to welcome Jessica DesRosiers, Director of Programs for Alzheimer's Association Central New York Chapter, located in Syracuse. Thank you Jessica, for participating in this special episode to chat with me today. Would you please share how your career journey led you to work for this wonderful nonprofit?

Jessica DesRosiers: 8:28

Sure a little fact is that I've actually lived and worked in Syracuse and Central New York more specifically for my entire childhood and adult life. So definitely a native Syracusan and just really love and have a strong passion for the community that I live in myself and want to help the people that I interact with and that are part of my own community. So I previously had another long stint at a nonprofit for the previous 17 years before I came to the Alzheimer's Association. Same thing doing more community engagement work, a little bit of health like health systems work, working with our local hospitals to really just let their patients know that there's more that community organizations can do and that there are lots of resources out there in the community. So really my passion A is nonprofit, because I love just doing more meaningful charitable work but also helping the community that myself I live in.

Julie Rogers: 9:29

That's amazing. I can understand wanting to work for your own community, that you are part of growing up your whole life, and for you to give back like that is a real treasure for the community, so thank you for that. I myself grew up in Northern New York, lived in Connecticut for 20 years, down in Georgia for about four and then came back home to the North country, so I you know it's my favorite place on earth.

Jessica DesRosiers: 9:54

Except for you know, December, January, February.

Julie Rogers: 9:56

Yeah, which is why I'm in Puerto Rico for the winter. I'm very blessed with my husband, so I understand that, Jessica, but I'm always looking forward to coming home in May. So it's just, the summer goes by too fast. So the mission statement for Alzheimer's Association is, quote the Alzheimer's Association leads the way to end Alzheimer's and all other dementia by accelerating global research, driving risk reduction and early detection and maximizing quality care and support. How does this statement coincide with your role, Jessica?

Jessica DesRosiers: 10:35

Sure. My role really isn't as important as the 19 staff that I have out in the 14 counties we serve. So they're the real, true heroes, you know, heroes doing the boots on the ground work. They're out there every day, driving all the way up, you know, to Canada and the North country there, all the way down to the PA border and Broome County, reaching as many people in whatever community we can get into to really raise awareness. That's our main goal. This, you know, last fiscal year and coming up is that we want more people to know we exist. Because what we do hear from time to time is people say I wish I knew about you sooner or I wish I knew about you when I was going through it. So we don't want to hear those statements anymore. So we're trying to be as visible in every community, big or small, that we can, and we have 19 amazing staff doing that truly, truly impactful and meaningful work.

Julie Rogers: 11:31

Oh, absolutely. And it's boots on the ground that are out there in every community, whether it's rural or a city or a town, village, because everybody, this disease has affected all of those communities. Absolutely, because here's the reality nearly 7 million Americans are living with Alzheimer's and over 11 million caregivers to help them. This number is projected to rise to nearly 13 million by 2050. The estimate worldwide is 55 million. That number comes from the World Health Organization. With these realities, can you share why it is so important to educate not only the public but also educate our primary doctors, who are the first doctor that we all go to see when something's wrong with us, with the tools to diagnose dementia?

Jessica DesRosiers: 12:29

It's a great great question, Julie, because really we're in the era of treatment right now, and what that means is that we have these amazing drugs now available that are disease modifying.

Jessica DesRosiers: 12:42

So what we need to do is let our communities know, but also our health care providers know, that these treatments are available, but they're available for those in the early stages, and what that means for people, you know, like primary care providers or neurologists or gerontologists, is that we've got to get diagnosing sooner. So we've got to get, you know, the early cognitive screenings. We've got to have people be more aware that they should be asking their provider, you know, to do a cognitive screening or, if they recognize changes, to bring that up, because the earlier it's recognized and diagnosed, these treatments are then available. So we are, like I said, in the era of treatment, because we have these disease modifying drugs that are not a cure yet. They are to delay the progression of the disease. So that way we have more time and I think with that time we in fact will make some really great strides with finding out a little bit more about this disease.

Julie Rogers: 13:38

Oh, absolutely. Like for my mother. When I intervened as one of her caregivers back in 2016, and I went to her local doctor with her, he was just like at a loss, was like there's nothing that can be done. You know, so we have come so far, just even in these years. So I'm really, really proud of the association and the scientists and all the donations that people give to help make that happen, to start being in the in the age of treatment.

Jessica DesRosiers: 14:12

You're so right, like that's why we do those walks, you know, to raise money, because it goes to research, it goes to being able to find these things out and directly impact our local community.

Julie Rogers: 14:22

Absolutely. Every dollar makes a difference for that. What types of services and resources does Alzheimer's offer to those who need support, whether you are a loved one dealing with this disease or caregiver?

Jessica DesRosiers: 14:36

So this is one of my proud moments to be able to talk about all of the programs and resources that we have because they're absolutely 100% free. So everything we have is free to both professionals. So you might be employees at an organization, a long-term care community, or just community members, and so we kind of have these three buckets of programs and services that we offer. So we have community education and that runs the gamuts from everything about healthy lifestyle living, prevention, but then we can get a little deeper into communication behaviors living with the disease. Some other things that we educate our professional side of the workforce, so we do some education for first responders, knowing that they may come or get a call to a home with somebody living with the disease and not quite know how to interact with the individual. They might be angry, they might be agitated. So if our first responders are a little bit more aware and educated, I think that whole experience will be better. So I love that we have that aspect.

Jessica DesRosiers: 15:41

We also have this other side of the work we do that is for the caregiver, because, as you mentioned, those statistics, that astounding number of caregivers, and I think that's only going to grow due to the aging population that we have.

Jessica DesRosiers: 16:00

So we have support groups for caregivers, we have one-on-one consultations that they just have questions, they can talk to one of our care consultants, and then we also do something called early stage social engagements and really what that is is I like to call them our adult field trips, but it's just a time where we're out in community apple picking, we've gone to museums I know in the spring they're going to a local ice cream shop so it's just being in community with others and for those few hours, not having to think about being a caregiver, not having to think about the disease, just truly enjoying one another, because we do know that the worst thing is isolation and no one should be suffering alone. So we want people to know that there's support out there and I hope that's what our programs and services bring to people that are either a caregiver or living with the disease.

Julie Rogers: 16:49

Yes, absolutely, and I can attest to that. I didn't really know about the Alzheimer's Association until my family was dealing with navigating. You know our roles and what was happening to our mom and I did get to use that support system that they offered and the education on how. What is happening so it really helped myself and my family, so I love that. That is still one of the main goals is to deal with to feel that you're not alone. So that goes right into this next question. Can you explain how calling the free, confidential, 24-7 helpline, which is 1-800-272-3900, can assist anyone who needs help, no matter what time of day or night it is?

Jessica DesRosiers: 17:42

Yes, absolutely Glad you asked that. I like to tell this little story because I'm relatively still new to the organization. I've been here just two years. But when I first heard you know, make sure you mention the 1-800 number. It's on all of our material I was kind of like it was a little standoffish because generally consumers as a whole, we see an 800 number and we're like, oh, you know, I don't know where that's going. It's not, it's not local. Am I going to get a, you know, an actual human? Am I going to get a machine? I will tell you, 100% in fact, that you do get a live human being, that they are actually a licensed social worker and we can accommodate over 200 languages spoken. So I love that fact. We know that.

Julie Rogers: 18:27

That's so crazy 200 languages.

Jessica DesRosiers: 18:30

When I heard that I was like, oh my goodness, because you think, oh, we just need Spanish and maybe you know Mandarin and things like that. But we have a lot of immigrants and we have some new Americans. I know in Syracuse, on the north side, we have a very large new American population. You know, like Swahili is the main language spoken. Who would think that we might be? We can help them.

Jessica DesRosiers: 18:52

So definitely call the 1-800 number, and the reason we promote that it's also 24 hours, so the disease doesn't take a break, and there could be a moment of crisis at two in the morning. Unfortunately, our offices are closed at that hour. But the 1-800 number has somebody there that you can speak with. It might just be to speak to you know an actual voice. It might be because you have a question about your loved one at that moment. So please, please, we'd love to kind of tout it from the rooftop that it's a real number, you speak to people and we hear so many great stories of people that have actually used it and how it really made a difference.

Julie Rogers: 19:28

Absolutely. I love that and it does make a difference. I myself have called that number before, so for sure. I want to give you a shout out, Jessica, because I think the important work that you have done, along with your whole staff at Central New York. But as the Senior Director of Programs, you coordinate the community and resource events around Central New York and the North Country as well as host things like the Dementia Care Conference at Syracuse which was OnCenter last year. The number of different vendors was 45, which set a new record for the greatest number of vendors to attend in the history of the convention, which is huge. Also, the Alzheimer's Association of Central New York made a monetary donation to aid Oswego County Opportunities last winter, helping to fulfill their seniors' home-delivered meals program. As we know, during the harsh winter months it can be hard for clients to get to the stores. The clients received a blizzard bag First. What was in those bags and how do these outreach initiatives make a positive difference in all of our local communities?

Jessica DesRosiers: 20:44

This was a really great opportunity that we had. We have a great strong connection with Oswego County and we had heard that they had a fantastic program already existing. So we didn't want to kind of rock the boat. We just wanted to help and say you have such a need and you're kind of only able to help X amount of people, but if we were able to support that, could you reach more? And they said, absolutely. So we just really we gave them some funds that would allow them to reach even more people with these blizzard bags and really what's in there is some non-perishable foods, some things like a hat or a glove, also some, like I know they put some puzzles in. So the point being that in the north country region, as you know, there's some really remote places and then we also get pounded with snow. So sometimes some folks aren't able to actually get out to go to the store or have the necessary resources that they may. So it's really great these volunteer drivers go out and make these deliveries and it really does bring a smile to people's faces. So we were so happy to be part of that and I'm going to say we're going to do it again. You know this coming. We kind of get ready in the fall for the winter season, so we're really excited about that.

Jessica DesRosiers: 22:01

You also touched upon our caregiver conference. So that's coming up in May. We did have it at the On Center last year and what we kind of learned is that venue is very large and I think being in downtown Syracuse with all of the construction on 81 and construction downtown it might be a little intimidating for us folks. So we did move it to the suburbs at the Doubletree Hotel in East Syracuse. We've done many events there so you know, right on site parking, very easy to get to. So we're really excited about that.

Jessica DesRosiers: 22:31

And you mentioned the vendors. Surprisingly, I guess I didn't see the or think I knew the impact that that would have. At the conference last year I was like, oh yes, we have vendors. It's great to let people know about resources in the community and it gets them out there. But we had two strategic times during the conference that we kind of left a nice big break for our caregivers to go out and chat with those 45 folks. And I would just look around and see such meaningful conversations happening. People talking to a gal at M&T Bank learning about setting up trusts and different things with savings accounts. You would see someone talk to somebody from a long-term care facility and what that looked like and how do I plan for that. So it was really I think it was something I didn't expect to happen, but we saw such meaningful things with that that we said we have to do it again this year. So we've invited all those same folks back. We're very close to filling up too, so that's exciting.

Julie Rogers: 23:37

Yes! Thank you for sharing all of that, and at the end of this episode in my show notes and links, I will have that information there for people to you know, vendors or for people that want to attend it.

Julie Rogers: 23:49

So I think it's a great opportunity for people to really see what's out there for support and I just love that. So I'm so glad you gave us so much information about it. One of my own personal goals as an advocate and a volunteer for Alzheimer's Association is to destroy the stigma around dementia. I know education is the key in doing that and now that we are in that age of treatment for Alzheimer's and other forms of dementia, can you discuss how, by breaking down misinformation, stereotypes that are not true, how that will lead loved ones and families to not be afraid to talk to their doctors, their spouses, their families and their friends if they are starting to experience some memory loss or not feeling like themselves?

Jessica DesRosiers: 24:37

Absolutely! Great point, because that's really what's going to be pivotal in us making such a large impact is getting people to A talk about it more right. I know growing up and maybe you as well people just assumed that that was something was going to happen when they aged. It was part of the natural aging process. I've heard people say it's called old timer's disease. Well, that's not true. It's definitely. We don't want to just wait and let it happen to us. We want to educate ourselves. We're learning more about prevention, meaning reduction in your risk through healthy lifestyles, so things that would normally reduce heart disease and diabetes. Same thing is we're finding is reducing our risk for Alzheimer's and all other dementia. So getting that knowledge first and not being afraid to talk about it.

Jessica DesRosiers: 25:33

You mentioned stigma and again, I think the world we used to live in is we didn't talk about it because people were ashamed or they just felt like there isn't a cure. I'm not going to lie, but there are things available to help now, so we want to shout it from the rooftop. We want our doctors to know. We want our communities to know that this is nothing to be ashamed about. There's help and resources. We're seeing more and more people being diagnosed younger and younger and this disease was happening to younger folks, but they were not being diagnosed per se until later stages or years of their life. So if we can get on top of it earlier, people are aware. They're asking questions. I think. To me that helps reduce the stigma.

Jessica DesRosiers: 26:20

Something that people don't, I just want to sneak this in, is Alzheimer's is, the foundation itself, it's fairly new in the landscape of what I call the big three. You've got heart disease, cancer, diabetes. They've been around for a lot longer, so we have those larger cures and treatments. People are proud to wear their pink breast cancer shirts. We want that to be us. We're just a little bit further, you know, behind because we're still relatively new. So you know we're seeing more purple out there and we see a lot of places that are, you know, painting the town purple or wear purple day. So that's where we're at. You know we're getting there and we just need more and more people to talk about it.

Julie Rogers: 27:03

Yeah, I'm so glad that you brought that all up because it is it's it is kind of new compared to these other you know, heart disease and cancers that have been around forever and and they've had medicine and support groups. And yeah, Alzheimer's is nothing to. I would try to tell my mother that, like there's nothing to be ashamed of, you didn't do this. This is a disease, mom, you know, but at that point she was just, you know, she was scared and she just didn't understand what was happening to her. So that's why I advocate, that's why I, you know, it's so near and dear to my heart and I just, I just don't want any family to have to experience what my family had to do losing our mom that way.

Julie Rogers: 27:46

You know, I lost my dad to lung cancer and he was a smoker and that's what happened to him. He didn't get to enjoy his retirement, but he knew for the most of his life during that disease what was happening and why it was happening to him. My mother didn't have that luxury to know. So education is key having more time to do those once in a lifetime trip, perhaps with your family or loved ones, with your friends, and knowing that your friends can still give you support. You know, my mother was afraid she was shutting out her friends because she was embarrassed. So we know so much more about this disease and I just want to spread the word. So that's why we're here.

Jessica DesRosiers: 28:29

Yeah, A personal passion of mine is healthy lifestyle and I just feel like that can do so much for your future and your longevity. So I love that we're now seeing the connection in research to healthy living modifications early on at risk reduction. So I'm kind of like that's my platform. I'm taking it and running with it, because I want to get to the 20, the 30 and 40 year olds and say listen, you can do something now.

Jessica DesRosiers: 28:56

So just you know living a healthy lifestyle, and it's not. You don't have to diet and run marathons, we're just saying, you know, not smoking, watching your drinking, moving more just that's going to impact your brain health and we've never talked about it in that way.

Julie Rogers: 29:13

I love that platform and I 100% agree with you. So can you share more public programs that are coming to the communities in Central and Northern New York this year?

Jessica DesRosiers: 29:25

Absolutely. Like I mentioned before, we have a fantastic team of staff that are so passionate about delivering these education programs. I'll speak a little bit to the North Country. We have a program manager here, Vicky. That's her area, so she serves Oswego, Jefferson, St Lawrence and Lewis, and I did mention that we were speaking and she's like oh, I love Julie!

Julie Rogers: 29:49

I love Vicky! VickyShe's awesome. I got to know her.

Jessica DesRosiers: 29:51

She's perfect for that area because you know it's relatively tight knit and they've always had a lack of services in the North country. So she's made it her mission. Since she's been here over two years and I'm going to tell you the relationship she's formed, the trust with the community. Her energy is amazing. We really have grown in that four-county region to offer as many programs as possible, so we are just adding more and more every day. Obviously, when the weather breaks here she pretty much lives in her car up there, but it's been a rough winter.

Julie Rogers: 30:25

Yeah, yeah, I know I remember last summer working with her and at the end of summer too, her Subaru and how she has it all set up for everything and her husband's very supportive and she's just a gem for you guys to have her and I'm privileged to work alongside with her. Looking forward to that some more this summer and fall. So I really appreciate you taking the time to share these important insights, Jessica, with what the Alzheimer's Association does for all our communities, not just in New York, but all 50 states.

Jessica DesRosiers: 30:56

You're welcome. It was always a pleasure chatting.

Julie Rogers: 31:02

Don't forget to go to my show notes and links under this episode, from wherever you listen to my podcast, to find more information about Podcasthon. That's P-O-D-C-A-S-T-H-O-N . org. And the Alzheimer's Association. That's A-L-Z . org. There is also a link that will take you to my email address, julierogers at nearestanddearestpodcast. com. Please send me any questions, comments or if you want to share your own story with me. This season I want to focus on sharing stories that have impacted you. You can share your name or be anonymous. I truly believe by speaking your own truths will help you to realize you are not alone. The views and opinions expressed by Nearest and Dearest Podcast are those of the authors and do not necessarily reflect the official policy or position of Nearest and Dearest Podcast. Any content provided by Julie Rogers or any other authors are of their opinion. They are not intended to malign any religion, ethnic group, club, organization, company, individual or anyone or anything. Thank you.