EPISODE 15 – Alzheimer’s Association: Lori Stanton on Care, Advocacy & Research

In this episode, Jamie Callahan sits down with Lori Stanton, Program Director at the Alzheimer’s Association (Oregon & SW Washington), to explore the wide range of free services, advocacy efforts, and groundbreaking research the organization is offering to families and caregivers affected by dementia and Alzheimer’s.

Topics include:

• The difference between dementia and Alzheimer’s
• Local and national support programs
• Respite care and stress relief for caregivers
• Innovations in diagnosis and treatment
• How you can get involved in advocacy

📞 Alzheimer’s Association 24/7 Helpline: 1‑800‑272‑3900
📍 Local Offices:

• Portland metro / Lake Oswego: 503‑416‑0201
• Central Oregon / Bend: 541‑317‑3977
• Mid-Willamette Valley / Salem: 971‑273‑0643

📞 Team Senior: 541‑295‑8230

Transcript

 Hi, this is Jamie Callahan with the Team Senior Podcast. Our goal is to simplify aging society, grooms us to plan for retirement, but what about life beyond retirement, where the rubber meets the road? Perhaps you've had a stroke or you've been diagnosed with cancer, or maybe you're forgetting things and now you have dementia.

That's our area of expertise and we are here to share our insight. And now the team Senior podcast. Hi, this is Jamie Callahan and we are in the. Studio today with Lori. Lori, I'm gonna give you a minute to introduce yourself, but first I wanna tell you a little history here. Lori is absolutely amazing.

She's been with the Alzheimer's Association for a long time, and she is an incredible advocate for fundraising and putting together events that help bring awareness about Alzheimer's. She's the program director. But Lori, tell us a little bit about, what you do, what your role is, and why you got involved in this work.

Yeah, absolutely. Like you said, my name's Lori Stanton. I have lived in Grant's Pass for 12 years and I've been with the Alzheimer's Association for 12 years. Those things coincided. I actually got the call for the interview on the day that we were flying out of Alaska to move down to Oregon.

So that was pretty, oh my gosh. Serendipitous. Yeah, it was really. Really fun. But I got involved, actually I started volunteering with folks with Alzheimer's disease when I was nine. And my mom worked at an adult day center and she just fell into that work and I started volunteering all my days off from school breaks.

And it was really nice because we had moved far away from all of my grandparents who I really loved, and it gave me 20 grandparents right off the bat. Boy, I can 

appreciate that. I know I have a very similar. Story. I was very close to my grandparents growing up, and part of why I'm so passionate about what I do is because I don't have any grandparents anymore.

And so this allows me to develop those really close just wonderfully genuine relationships with people that are aging, and I love that. For listeners who might not be familiar, what is the core mission of the Alzheimer's Association? 

Yeah, so we are going to. Hopefully eliminate Alzheimer's disease and all other dementias.

But we're going to, in the meantime, really accelerate research. We're going to encourage and increase concern and awareness and really just get the word out about Alzheimer's disease. It really breaks my heart every time I hear, oh, I wish I would've known about you guys when I was going through that.

Our mission is to really get the word out that we're here now, we're free. All of our programs and services are free. Cost should never be a barrier for people to receive service. 

That's really important for people to know. And I wanna circle back quickly to something that I recently learned in the presentation that you were making.

I always knew that there's dementia in Alzheimer's. You really brought to light that Alzheimer's is a type of dementia, but there are lots of different kinds. Speak to that a little bit. Yeah, so dementia is like this umbrella term, right? And Alzheimer's is the most common type with 60 to 80% of all diagnosed dementias being Alzheimer's disease.

But we have. Over 200 other different types of dementia. That's so amazing. I had no idea until you shared that in your presentation. Yeah, it's crazy. Some are types that we've heard before, like vascular dementia or dementias that are associated with other disease processes. Somebody might be diagnosed with Parkinson's but have Parkinsonian dementia, so a dementia that's associated with Parkinson's disease.

But then there's mixed dementia where people could have two or more types. That makes it really hard to diagnose and makes it pretty hard to treat too. 

I bet. So with all of those different types of dementia what are some of the key programs and services that say the Alzheimer's Association would help families and caregivers within Oregon?

So I would say our number one program that anybody can access no matter where you're at any time of day, is our helpline. So it's twenty four seven. People can call in the middle of the night, they can call on the weekends, they can call on the holidays, and a master's level clinician answers the phone.

You can call because you need to vent. And you can't really do that with your person. Sure. You can call because you're concerned about something and you're not sure if it's something you need to be concerned about. And you can call just because you're confused as to what's happening and you're not sure how to interact with that change.

And what an important thing to offer folks that live in a more rural area or an underserved area to have a hotline that they can call. 

Yeah. So no matter where you're at in the state, in the nation, really, you can call this helpline number, and that's 1 802 7 2 3 9 0 0. Like I said, on the holidays, you can call Christmas morning and a person answers the phone.

Oh, I love that. I use that term all the time. You can always call team senior two, even on Christmas morning. Yeah, we're always available. So when we look at folks that you have personally worked with, can you share a story or an example of someone who's been impacted by the work that your team does?

Yeah. So I would say we're, right now we have a rural grant and that's really helping us to get into these more rural communities that haven't seen a lot of. Assistance in the past. And with that, we're bringing education support groups and community togetherness is what I would call it. So trying to just, we're not going in to reinvent the wheel.

I. Just bringing community together and trying to be a part of that. So with that we've had very successful mini McGinty's. So these are these mini educational conferences. We have our large McGinty conference every year in Portland in November. But not everybody can get to Portland. Not everybody has the time or the resources to get there.

Even though the conference is free for the first 250 family caregivers. Still, it's a burden you still have 

to get to Portland and all the things. So I've had the pleasure of actually attending a few of your smaller mini McGees recently, and I have to say what a blessing to our community to have you in that role in these smaller towns where it's not just families that are there, but it's also medical professionals that are coming to learn about all the great things that the Alzheimer's Association offers.

Yeah, and I think one of the best. Things that I heard at the mini McGinty was a pers We were asking about respite and what does respite mean to you and what qualifies for respite. And this person said, this qualifies as respite for me. I'm getting to learn about new things. I'm getting to meet other people.

And, this is my respite. And I was like, oh, that just makes my heart sing. Yeah, that's 

absolutely makes your heart sing and makes your heart hurt a little bit for folks that really see this educational opportunity as maybe their only chance to get away. I wanna just touch on respite for a minute.

And how important it is when we see folks that are living at home that have a dementia diagnosis. They are oftentimes unable to be left alone for a wide variety of reasons. There are several respite opportunities that are available in southern Oregon for through various organizations, the Rogue Valley Council of Governments various others.

Can you offer any. Thing that you might know that would provide respite opportunities to families where they would get some supports in their house so that they can go out and protect their own mental health? Yeah, absolutely. So one of the things that we offer is called a care consultation, and that's where we meet one-on-one with the family, figure out where they're at in their process.

'cause sometimes they don't know necessarily, right? We don't know what we don't know. So we help figure out where things are at. We look at different finance revenue sources. And. What things that they can take advantage of. And then basically I'm an information and referral source, so then I can say, okay, these things will fit within.

What you qualify for. So you can look at these different options for different people. Those options are gonna be different. And so that's why doing the care consultation aspect is important because it's not gonna be the same for everybody. 

So I wanna clarify what I think I hear you saying. So the Alzheimer's Association has a community outreach program where if they called you, you could actually send someone into their living room to do a consultation.

So I don't go into their living room. Okay. But we can do it over the phone. Okay. We can do it over Zoom. I can meet 'em in a coffee shop. 

Okay. Yeah. Okay. So you are able to spend some one-on-one time with them in some focused setting where you're able to take a deep dive into what their specific needs are, which then allow you to connect them with resources in the community.

Exactly. That is amazing. That is amazing. So something that I have always known and loved about the Alzheimer's Association, which I think is what most people know them for, is their funding for research. What are some major areas of research being prioritized right now? 

Yeah, so we're looking at biomarkers, right?

And how biomarkers can help us not only in the diagnostic phase, but also in the treatment phase. So how can we look at our biomarkers and see where people are at and how they're reacting to treatments. So biomarkers is like this kind of big, medically word sounds big to me, right? Yeah. All it means is that we're looking at what's in our body to tell us what's going on.

So like blood is a biomarker. Cholesterol, saliva, all these different things that we can look at to just tell. Where things are at and what's happening in our body. Another big thing is retinal imaging. So we're looking at what can our eyes tell us about what's happening in our brain? So that's pretty big too.

Yeah. 

That's amazing. And what a tremendous development. And I know that, as we continue to progress just as humanity and as different scientific opportunities come out, there are so many things that are being explored. Lord through blood work right now. I just recently stumbled on a company that's able to do a finger prick blood test and tell you whether or not you have the markers for colon cancer.

Yeah. Which is unbelievable. Yeah. So many amazing things. So I'm happy to hear that the Alzheimer's association is going down that path. What breakthroughs are promising developments are you most excited about? 

So thank you so much for asking. 'cause I'm very into the research. So we. Did this study.

It's a two year study and it's called the US Pointer Study, and it looked at modifiable risk factors. So these are things that we can change. This is looking at things like eating healthier getting more exercise, stopping, smoking, all these things that we can change, right? So over a two year period, over 2000 people took part in this study.

Wow. 

Yeah. All across the United States. What was really cool is 30% of the participants in this study were from underrepresented communities, which in a clinical trial is pretty big. Sure. We have a hard time recruiting in underrepresented communities. The results are gonna come out in July, which.

Again, very exciting. I think it's gonna be positive. And then this study is part of a much larger study called the Worldwide Fingers Study. So not only are we looking in the United States as to what we can do with modifiable risk factors for Alzheimer's disease, but across the world. How does this look?

So we're looking in Finland, Australia, Brazil, all these different locales to see, okay, it's working in the us Is it also working in Brazil? Is it also working in Finland? Over 59 countries. 

Wow. Yeah. Oh my gosh. And I bet one of the very interesting things that will come out of that is what are the commonalities, right?

So what are you doing in Spain that we're doing in the United States that's either causing it or preventing it just around food or medications that you should or shouldn't take? Yeah. I heard something years ago and I am like ashamed to admit that I still take Benadryl on a semi-regular basis, but I heard that the ingredient that's in Benadryl could potentially lead to increasing risk factors for dementia.

I. I would assume that if people were to call the Alzheimer's Association, they would be able to ask questions specifically around, what am I doing in my present life that could help me prevent it or are increasing my chances of getting it. 

Yeah, absolutely. Again, you can always call our helpline.

We also have a class called Healthy Living for Your Brain and Body that really delves into that. You can take that class online either. At our training portal through our website or over Zoom, or you can take it live in community. So that can also address some of those concerns. 

That's super awesome.

Where would somebody go to learn about live trainings? 

Yeah, you can go to our website, so if you go to az.org. Back slash crf. That'll take you to our community resource finder. You put in your zip code and then it'll tell you what classes are what Any event, actually you just put what event you're looking for.

So an education class, a support group, a walk. And that'll tell you what is nearby. 

That is amazing. Lori, when we connect after this podcast, I would love for you to send me that information so that when folks need to access it, they have a quick reference of, a way to do that. How is the organization involved in public policy and advocacy work?

Yeah. That is one of our main pillars is talking to our elected officials. We do not receive at the chapter level state funding or federal funding actually. So while we do receive that in grants for research. We don't receive it for our care and support or for our everyday operations.

When we're advocating, we're not advocating for the Alzheimer's Association, we're advocating for our partners and for those who have been diagnosed and for our caregivers, so programs that will affect those folks. Sure. So we've advocated for respite programs. We've advocated for Oregon Project Independence advocation or advocating for those who.

Really. Need the programs that are gonna help them the most. Every year we take about 50 to 60 folks to the capitol. In Salem, we also go to the capitol in DC we, Alzheimer's disease, we call it a purple issue. It's not red, it's not blue, it's bipartisan. 

What a great way of explaining it.

I love that. That's really brilliant. It is definitely a bipartisan disease, so when we, we have listeners that come in all the time what can they do to help support the cause, whether it's volunteering or fundraising or spreading awareness? What do you recommend? 

Yeah, really, whatever speaks to you, we need people to help us in all of these areas, right?

So if you wanna volunteer with us we would love your help. I need volunteer educators, support group facilitators, people to help on our walk committees. Even if you wanna have a table at an event, that would help me a ton. We need people who. Will just help us spread the word about the Alzheimer's Association and that our programs and services are free so that nobody goes through this journey alone.

And if you are a great fundraiser and you wanna put that to work, we need that too. Yeah. Great. 

Yeah, what it, I feel like that was something that I really learned or have now a greater awareness of just from talking with you today, is that, I think as a whole, when people hear Alzheimer's Association, we.

Think this is a research based institution that is not even located in our own, backyard. Something that's important for people to know, which I do know, but now I know more of is the amount of hands on hand or hand in hand assistance that is available right here in southern Oregon for people.

Lori, who, what does your team look like in Southern Oregon? 

Yeah, so we are a statewide our chapter is statewide. In Southern Oregon, we have two folks. We have myself and Christie Hill, who's a development professional. So she works on our longest day in our Medford walk. And then we have an office in Salem.

We have an office in Bend, and we have an office in Lake Oswego. So we have 13 staff statewide, and then the rest is volunteers. Yeah. Yeah, that's 

amazing. And I know that you have a lot of volunteers with the Alzheimer's Association. So you've mentioned it now a couple of times, so I want to.

To talk about it for a minute. So you have a walk, an Alzheimer's walk every year. Talk to us about that. How do people get involved? What is the walk? What's the purpose behind it? What is that? 

So we call our walk our largest support group. This is where you go and you actually just see a sea of purple. These are all folks that are somehow connected to the disease, whether they are going through the disease themselves, whether they're caregivers.

Professionals or want to see a world without Alzheimer's disease. However, they are somehow connected to this cause. In southern Oregon, we had over 300 people last year. 

That is so amazing. 

It's just, it's such a feel-good event. I just, I leave that event every year just. Walking on clouds because I'm just like, so many people care about this.

It's such a unique disease also, and it's prevalent, but it's also I think the one. Disease where you grieve a person twice. So we talk about this with families all the time when we are meeting with them and talking through, the challenges that they faced in terms of the adult children being forgotten or the spouse isn't remembered.

And what that looks like. You're grieving the process of being forgotten, but then you grieve that. Person again, when they pass away. 

Yeah. 

What types of supports does the Alzheimer's Association have in place in terms of support groups that are available? 

So we have both in-person support groups and online.

So whatever works best for a person's schedule. And then we also have what we call affinity groups. So if you're. Of a, you wanna meet with other people who are specific in your situation. So for example, we have a grief support group for people who have already lost their person. We have children, adult children, we have spouse, we have L-G-B-T-Q, we have a black support group.

So really, if you want to meet with a certain kind of clientele. You can do that. And then we have everybody's welcome groups as well. We have an early stage group in Medford and in Bend. So that's where people who have been diagnosed with the disease and their care partner both attend together.

That's our only support group that is specifically for those who have been diagnosed. So that gives them a place to talk about what's happening too. 

Sure. Yeah. That's. So important. It, you mentioned that you have, so you have them in both counties, Josephine and Jackson County. And I would imagine Klamath as well.

Do you remember off the top of your head when those are and where they are? Should have written that down. That's okay. Yes. So in Josephine County, it's a last Friday of the month and it is at, club 60. Okay. I think it's from two to three, but call me to make sure of that. Okay, no worries.

In Jackson, the early stage group is every Monday at the New Life Church of the Nazarene. Again, I think it's from two to three. But you do have to register for that one. Okay. So we do ask people to call and register for that, and then we have one at, it's a Presbyterian church. I think it's Black Oak Presbyterian.

So we'll do our research 

and make sure this gets published when we run or when we roll out this podcast so that people know how to access these different groups. That would perfect. It is really important. I will tell you, I've attended several support groups and it's super educational, I think, and.

A supportive opportunity that you don't even recognize that you needed. Until you're in that setting and you're hearing other people echo exactly what you're going through in your own home, it really normalizes the experience that you're having and helps you not to feel like you're on an island.

Yeah. Yeah, absolutely. And I just remembered it's Westminster Presbyterian on Black Oak. Okay. 

What's one thing that you wished more people understood about Alzheimer's disease or those that are affected by it? 

I think, I wish that people understood that there are still moments of joy, that you can still laugh and have happy times, and that while it's a devastating disease that you can still have fun with your person.

And I think sometimes that's hard when you're in the moment. But I think that when we. Find ourselves in a place where we can joke and laugh and have fun with our person. It just makes life a little bit easier. 

And I think too many people probably know some of this, but I'm gonna, I'm gonna turn it to you to share some of those things that, that you're, you are able to penetrate.

Older memories by doing certain things. So just at a high level, music babies things like that. Walk us through some of those things. 

Yeah, so music's amazing. It's the one thing that we have found that stimulates the entire brain simultaneously. So when people have been hooked up to electrodes on their brain and we play music, the whole brain lights up.

People who have lost the ability to speak. Can still sing sometimes. Even if they're not singing, you'll see 'em tap their feet clap their hands. So music is amazing in penetrating through the fog of Alzheimer's. Art is another huge way to communicate. People who, again, have lost the ability to speak a lot of times will communicate through art and can sometimes even reminisce.

About what it is that they're painting or drawing. So we can ask open-ended questions and they can tell us what's happening. A lot of times, what we try to do is avoid quizzing all the time. So instead of saying, who is this saying, oh, this looks like a fun vacation. Maybe this was at the Grand Canyon, and see if that spurs the person to say something.

And if it doesn't, that's okay. Sure. We'll just continue on. 

We've seen through, they have weighted babies that feel like a baby and like a real infant. We have gifted these to some folks that live in memory care communities and it is. So beautiful to see somebody that is largely withdrawn, maybe nonverbal now, not wanting to come to the dining room table, not wanting to take a shower giving someone perhaps it is in your own home so you know that this is an option.

If they are maternal and you hand them a weighted baby, it improves their quality of life. From our perspective we've seen this happen several times now because now they want to come to the table because they wanna make sure baby also eats. They maybe wanna take a shower because, they wanna make sure the baby is also taken care of.

I've seen folks that, that are very, like I said, withdrawn, nonverbal, and you hand them this. This baby and they start rocking it and humming to it and you see them essentially come back to life in, a roundabout way. 

Yeah. I think knowing a person's history. Can be really beneficial in that.

So if we know that this person was a mother or a father and really took very, took a lot of pride in that that could be really helpful. And then in the same vein, we have the animals, right? So the cats and the dogs that are actually robotic but still per and feel very lifelike.

So if a person was very into animals. That could be a real comfort for them as well. Again, knowing that person's history and being able to draw on that, I think is super important. 

I feel like that's such a profound example to the animals. So when my brother-in-law and I'll share a side story about him quickly, but when my brother-in-law was in memory care community, he had a dog that he loved.

And so we would take the dog to see him on a pretty regular basis. We're talking like every other day. And we would stop to visit each of the other residents that were in the living room, and they were just, they would light up, you would see this complete change in their body language and everything just by, having the opportunity to interact with an animal.

I think most people love animals. The interesting thing about my brother-in-law is that he had forgotten, his family where he was, he and he lived it. At home for a very long time. We had a lot of supports in place for him. But it was also, just this, he was a music producer.

So he had a lot of very famous people in his living room from Mary Chapin Carpenter to all kinds of other people that we all know and love fun. And so they recently on Netflix and several other, programs on tv. There were documentaries that were made with music where he recognized faces.

And it was just so fun to sit with him on the couch and while he had no clue who I was. And he largely didn't know who my husband was, who was his brother. He recognized all of these people because it was in conjunction with music and several other things that were happening.

And that was a learning. Experience for me because I realized that we are all subject to our emotions, controlling our abilities, right? So if you're feeling very angry or very confused or anxious about something, you're probably not as capable as you are when you're feeling relaxed and happy.

And if you can get somebody in that space, you're probably gonna see glimpses of, who they. Are and not that we don't just by looking at them, you, everybody's desperate, I think, who is a loved one of somebody that has dementia that they're seeing on a regular basis.

To have that opportunity to connect with them where they remember. Yeah. Your story reminded me of a quote, and it's been attributed to a number of different people, so I won't say who said it, but it said, A person may not remember who you are, but they will always remember how you made them feel.

And your story just totally reminded me of that. Yeah, if we can make a person feel loved, happy, belong. They'll remember that. 

Yeah. I love that. I've heard that saying also if someone is listening today and they're caring for a loved one with Alzheimer's, what message would you want them to leave with?

That you're not alone. There are people out here that are going through the same thing as you, and there's help. So of course team senior but also, if it's in the middle of the night, and I know Jamie will answer her phone, but we. Also have helpline agents that are available. You're not alone.

You don't have to go through this alone. 

Yeah. And I think, something you mentioned earlier is sometimes you are not, you don't necessarily need an answer to a question. You just need to be able to vent to somebody that truly empathizes with where you're coming from. Yeah. Because they have either been through it or they have helped hundreds of other people go through it, which is the value in the helpline.

Exactly. They talk to people all day, every day, and a lot of times. When I don't know an answer, they're who I will call because I'm like, I haven't come across this before. Chances are they have and they can give some good advice. 

That's so great. I I think I'm gonna be leaning on that helpline now myself too.

Exactly. Where can people go to learn more or connect with your team specifically? 

Yeah, absolutely. Our website is a wealth of information, so you can find. Pretty much anything you wanna know about Alzheimer's disease on our website, which is az.org. And then you can also find our team on that as well.

That's so great. Probably just by putting in your zip code or something like that. Exactly. Lori, before we wrap up here, what are some things that you want people to know that maybe we didn't talk about? 

We didn't talk about some of our more fun events. So we did talk about the walk, but we also have something called the longest day which is a way that it's called a do it yourself fundraiser, so you can do whatever you wanna do and just.

Kind of bring people in on it. So a lot of times people will do hikes or kayaking or something like that. I actually made a free little library and put books about Alzheimer's disease into the library and then just did a QR code along with pictures of my grandparents, because all three of my grandparents passed with Alzheimer's or another dementia.

Oh my gosh. 

And we all love to read so when 

is the longest day? 

The longest day is on the summer solstice, so June 21st. Correct. Okay. Yeah. So the longest day of the year and we say the day with the most light is the day we fight. It's just a fun way to get out and tell other people about your passion.

So this is something that they do perhaps on their own. But they're honoring, this, they're honoring Alzheimer's by doing something on the longest day. 

And a lot of times it's something that their loved one liked to do. Or like for me and my grandparents all love to read. I love to read.

So that's why we're doing the little free library. But a lot of times it's just something that reminds you of your person or you just wanna do an honor of. 

I love that. Lori, I can't thank you enough for coming today. Lori shared with me that this is her first podcast, so I feel honored that she did it with me.

If you wanna reach out to Lori again, az.org you can search by your area and it will get cute connected with her specific team. If forget all of that, or you need something or you feel like, you're not. Able to connect with them. You're always welcome to reach out to Team Senior.

We're probably gonna circle the wagons back to the Alzheimer's Association for questions that are specific to Alzheimer's. If you're looking for ways to, like supports in the home, whether it's caregiving or memory care, or you're navigating that dementia diagnosis or you're questioning, when is the right time to execute, making a move, those are all questions that Team Senior definitely wants to try to help you with.

There are some very. Specific things that you need to know. We travel around the state of Oregon making presentations on that subject specifically. And so please reach out. Like I always say, we're the company that you can reach on Christmas morning, so give us a call. Thank you Lori again for being here.

We really appreciate you taking the time and this is it for today. Thank you so much everyone. Thanks. Thank you for listening to the Team Senior podcast. We're here every week sharing new and relevant information. Remember that we're just a phone call away. Team Senior can be reached at 5 4 1 2 9 5 8 2 3 0.

Again, 5 4 1 2 9 5 82 30. Until next time, this is Jamie Callahan.