What Comes After Diagnosis?- Moments That Matter From The Voyage Senior Living

On this 9th episode of Moments That Matter from the Voyage, Host Melise Oakley talks with Jessie Henson and Courtney Thomas. Our subject is "What Comes After The Diagnosis?"
 
Moments That Matter from the Voyage is a production of the Voyage Senior Living.

https://voyageseniorliving.com

Moments That Matter from the Voyage is produced by Tom Mann/Mannvoice.

Transcript

SPEAKER_00 0:00

Moments That Matter is brought to you by Binkley Ross Family of Funeral Homes, by Melissa's, and by the Insurance Alliance.

SPEAKER_01 0:21

Welcome to the Voyage Senior Living Podcast, Moments That Matter. Today, we're entering one of the most delicate phases of the dementia journey. What comes after diagnosis? Treatment isn't about medication or appointments, it's about emotional support and helping families regain their footing. If you're tuning in with a feeling of heaviness or a glimmer of hope, you've come to the right place. Let's navigate this together. We welcome back my guests, Courtney and Jessie. Now, where are you all from?

SPEAKER_03 1:00

We're with Deaconess, Illinois. I'm Courtney, I'm the neurology manager there.

SPEAKER_02 1:04

And I'm Jessie, I'm the program coordinator.

SPEAKER_01 1:06

In this episode, I want to just kind of talk about how we can help guide families through what happens after the diagnosis. Like emotional support, community uh um resources, and just building a care plan that can help the individual and their families. Because when someone says dementia are Alzheimer's, it's an autom I mean, it's just heavy. It's very heavy. And if you've had it in the past, you think about what's going on and what has gone on with your family members. Um, if you all could just kind of talk to us about understanding the treatments and the options.

SPEAKER_02 1:50

Definitely. So um, once we have the definitive diagnosis and determine that um the patient is eligible for one of our treatment options, there are two different infusions that we can offer. So tricky names, denanomab and lacanomab. So two um monoclonal antibodies, their infusions. Um, you get one is every two weeks, one's every four weeks. So this is a journey for the patient and the family. It's not uh, you know, one and done kind of a circumstance. So we make sure that they understand that and know that this isn't, you know, this isn't a month of treatment and done. This is it's a journey. It's about an 18-month journey. Okay. Um, it can be less. Um, along with the infusions, we're also going to be doing imaging throughout to make sure that everything is stable in the brain and then just see what the plaques in the brain are looking like as we go. So, something that is really awesome with Union County is that we kind of have a one one-stop shop for this and a coordinator that works there for it. So, as we're scheduling the patient for their infusion times, we're also scheduling their follow-up imaging. So they'll get and scan first to make sure they're stable and then they'll have their infusion. So instead of having to go, you know, to one town to get their MRI done, traveling to another town to get their infusion done, we're offering it all in one location. So for a patient with Alzheimer's and their family member who they're reliant upon, this is a much easier access for them that's you know less traveling, less stress, and trying to, you know, make it a little more um available for everybody.

SPEAKER_01 3:28

So and who doesn't like to go to Union County? They have such good shopping and food, right?

SPEAKER_02 3:33

Yes.

SPEAKER_01 3:34

So the medication um it potentially can slow down the process.

SPEAKER_02 3:38

Yes. So it is not going to reverse anything. It's not going to take everything away. It's just going to help slow the progression of the disease. So that's why it's very important that we're getting the word out there that early recognition is the most important key to this. So that way we're keeping the patient at a good function level. And local. Exactly, before everything progresses.

SPEAKER_01 4:00

That's amazing. Whenever someone does get the diagnosis and you guys are walking through this with them, kind of tell us about like the resources and the emotional support that because, like I've said before, it's just as important with the caregivers as the loved ones. Kind of just the support and the resources.

SPEAKER_03 4:23

Here locally in Southern Illinois, we have a lot of resources, um, such as support groups for patients, support groups for families, a combination of both. I think a lot of people don't realize that we have as much as we do in our area. Um, so I would say you would be a great person to reach out to to help people navigate um which resource would be best for them and where it's located, when they meet, those kinds of things. Our case management group at Deaconess is really connected with all of the community outreach and um resources available. So they're a good uh group to reach out to as well. And then the Alzheimer's Association is active in our area and they do have specific people dedicated to the Southern Illinois area. So they can reach out to them as well.

SPEAKER_01 5:16

Yes, and uh I always tell people use me as a resource. We may not be a fit for your individual because we do have a memory unit, it's the uh anchor, but a lot of times you feel like you're alone, but having this this testing and the treatment that it's so exciting because this is like so cool. It's in southern Illinois. Yes, and Deacon is is is offering it and so forth. So when someone does get the diagnosis and they have um they are uh needing to get help, you said that the appointments and so forth are about 18 months, but it could be less.

SPEAKER_02 6:01

Right.

SPEAKER_01 6:02

Okay. What uh is your suggestion to individuals for that on caring for that loved one?

SPEAKER_02 6:11

I would say the biggest thing which we try to do from the neurology perspective is making sure we have an open line of communication and that we're not just scheduling something and then leaving the patient and the family to navigate it on their own. Um, we want to try to keep um, you know, a good coordinator perspective. So making sure that when we have that patient with the diagnosis and then their loved ones, that we are helping them every step of the way. So calling them for appointment reminders, helping them set up transportation if it's needed, making sure that, you know, we've reviewed their scan and know that they're appropriate to have another infusion before they maybe have to drive somewhere to get the infusion if they're not getting it all in one place. So always having an open line of communication between the provider and the staff and then the family members so that they know they can call anytime they want to. They can use my chart to reach out. Okay. It's not just a here you go, good luck kind of a thing. It's a group effort. It's it's a we're all a family at this point. It's the the provider, the nursing staff, the infusion staff, the imaging staff. It's it's we're all on the same team at this point. So no one's ever just handling it alone. And we really want the family and the patient to understand that.

SPEAKER_01 7:26

Yes, because you do feel like I said, you do feel like you're alone. And there are caregivering support groups that can actually help the caregivers to have that respite. Um, there's, you know, there's adult daycare for respite care. There's, you know, and and it's out there. It's just a matter of people don't know it's out there until they get into a crisis situation. Yeah. What do you all provide for, like the roadmap for the information for the individuals with this disease?

SPEAKER_03 8:02

So the neurologist office will kind of be the ones to set everything up and guide them on okay, this is the if we're gonna move down a treatment course, this infusion is the one that I think is best. They kind of make that decision together.

SPEAKER_01 8:16

So there's several different options.

SPEAKER_03 8:18

There's two different options for infusions, but so like Jesse said, one is every two weeks and one is every four weeks. Maybe the family's like, well, there's no way I I can get them to an infusion every two weeks. So then we see, well, is the donatumab the every four-week one a better fit for this person? Um, so they really will look into all aspects of the patient as far as diagnosis and what their health history and their, you know, actual health status looks like for which one is the best fit, but also which one works best with their life as well. So that's part of it. And then um they will coordinate with the infusion and imaging team at Union County to get everything set up. And then once they have their first infusion, one other good thing about Union County is it's a smaller facility. The staff is the same. So you are most likely going to have the same one or two nurses doing your infusions. You're gonna get to know them. You're gonna have the same imaging text doing your MRIs, you're gonna see familiar faces. And so that will also help them feel a little bit more comfortable, I think. Um, but those nurses are really great. They set up the next infusion appointment while the patient is there. Okay. If they need to have an MRI done before that, they will set that up at that previous infusion appointment so they have it all ready to go. They do also have different handouts that they give the patient with information on the medications, kind of what the timeline looks like. They want to give them information and also not overload them, if that makes sense.

SPEAKER_01 10:02

Absolutely, because it is overwhelming. Yes. But what I love about um the Deaconess is that we meet every month with the social um caregivers, and we're able to communicate, and that's what's so important because we need to be, we're all spokes in this wheel. And in order for us, you know, and that's what I feel. I already feel like you guys have just really wrapped your arms around these individuals and embraced them and the families because that's important. Um, because I have with our memory unit, there's so many times that these loved ones that they're caring for walk out and they're they're upset, they're crying because you lose them every single time. Yeah. And maybe a part of them comes back, but it's still not the same. Right. And knowing that you all have this service and this support and the communication, that is the key. And you guys are doing a great job on that. What can we do as a community to get this word out, do you think?

SPEAKER_02 11:09

Um, we've done just in the past year since we've started neurology services at Deacon S, we've really tried hard to hit every opportunity that we've been able to. Health fairs, um, you know, all kinds of things like that. Yeah, any of our community events around, just to try the best we can to get it out there to all the folks who come that, you know, early recognition is key. There's things out there we can do now. We just hit the tip of the iceberg, I feel like, on, you know, Alzheimer's research and treatment options. And so I am so excited to see what's gonna come, you know, in the future, in the next couple of years. But just knowing that there's there's something, there's a glimmer of hope for them that they can go and tell their friends about when they're paying Bunko or they can, you know, anything like that, you know, that we there is something out there and that, you know, all it takes is just advocating and getting to getting to your doctor, and we can help.

SPEAKER_01 12:04

So just if you don't mind to share the information of how they get a hold, like how do you start this process of getting an appointment and who with?

SPEAKER_03 12:13

So the first step is with their primary care physician and making them aware that they feel that there is um a decline in either memory or functional status, and then they would need to get referred to a local neurologist. Luckily, we have quite a few in our area. So um all of our local neurologists work well and they know um that we offer these services at Union County, and I think pretty much all of them have referred patients there at this point. So it should be a pretty seamless process from there.

SPEAKER_01 12:47

So going on your website, um, do you guys have a phone number like that they can contact?

SPEAKER_03 12:53

So really it would just be the community neurologist setting it up. They can go to um Deaconess's website and under neurology, and these services should be listed under there. Um, but if if they just talk to their neurologists, they'll be the ones to kind of start the process and and get everything rolling for them.

SPEAKER_01 13:13

Well, I'm so excited because um I talk about this all the time. I talk nicely about you all. Thank you. But it's just it's exciting because, like I said, with the history that I have and just it's just a breath of fresh air. So thank you. Um, and thank you for for crusading this wonderful journey with the Alzheimer's and dementia.

SPEAKER_02 13:35

Yes.

SPEAKER_01 13:36

Thank you for joining us. While treatment can feel daunting, remember that you are not alone. There's support, guidance, and many joyful moments to discover along the way. From all of us at the Voyage Senior Living, we are honored for you to be with us on this journey. Until next time, may you find peace, strength, and connections in the days ahead.

SPEAKER_00 14:05

Moments That Matter is brought to you by Binkley Ross Family of Funeral Homes. Locally owned and operated. Binkley Ross Funeral Home, Blue Funeral Home, Mitchell Hughes Funeral Home. Call 618-997-7771 or go to BinkleyRoss.com. Buy Melises, tuxedos, menswear, custom embroidery, and apparel. Melises, the best little suit shop in town. Call 618-993-1800 or go to Melises.com. And buy the Insurance Alliance, helping families feel secure today and prepared for tomorrow. Learn more at the Insurance Alliance.com or call 618 532 2277.