Finding Community in Caregiving with Kitty Norton

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain & Life Podcast.
So, it is award season. This is when everybody's giving awards to each other. And I recently saw the Golden Globes. It's always like glitz and glamour, and who's sitting next to who. But it's really about celebrating film. Did you get to check it out, Daniel?

Dr. Correa:
I'll admit, usually, unless I'm invited to a party to watch, the Oscars-

Dr. Peters:
Were you invited to the Golden Globes?

Dr. Correa:
No, no, no. I was not setting that one up. No. Sometimes I've gone to friend's houses when they host the Golden Globes or an Oscar watching party, which I just enjoy the food and the hanging out. But I like to often the next day I watch the YouTube clips, and the highlights from some of the Oscars and Golden Globes show. I don't usually sit through the full thing. I prefer the movies than the award ceremony.

Dr. Peters:
So a shout-out to my grandmother Helen. I used to watch the Academy Awards with her every year, and she would curate all the movies.

Dr. Correa:
Oh, wow.

Dr. Peters:
All the way people adjust who sit next to who, she was always so much fun. She lived to be 102. I just loved spending time with her, grandma Helen. She was great. But I have a favorite film genre. I mean, it's wonderful seeing comedies and dramas, but do you have a favorite film genre?

Dr. Correa:
I would say I enjoy comedy and drama. And then my favorite afternoon activity on a cold day is to watch a documentary film about something completely new to me. And it just seems wild and out of place with some adventure around the world, or a nature film about a part of the world I didn't even really understand. That's really kind of the two spaces I enjoy watching movies. That or just some binging Netflix like the rest of us.

Dr. Peters:
Well, I can give you lots of recommendations on documentaries, because I'm a huge fan of documentary film. In fact, even before I came to Durham, North Carolina, which is where Duke is, I always loved documentaries. But they have a great film festival called the Full Frame Festival. It's every April, and it's an annual international event. It's dedicated to looking at non-fiction cinema, particularly documentaries. And what I find is, I agree with you, knowing a story of something that you've never been exposed to before is just really fascinating. But I also love the storytelling, that you really thrust into a person's life. It's very compelling to me. And I feel like it allows me not only to learn about something, but to fall into their feelings and be so empathetic with that topic.
And the reason why I bring this up is really, today's podcast highlights Kitty Norton. She's the director of a documentary film. It's actually her first documentary film, it's called Wine, Women, & Dementia. So definitely a fun title.

Dr. Correa:
It's quite a combo.

Dr. Peters:
Yeah. And it's a documentary, and she explores how patients with dementia are not really dying of dementia, but rather living with their dementia diagnosis, and how caregivers are impacted day to day and minute to minute as they cope with caring for their loved ones. And she has a mother that has Alzheimer's in it, and she sort of goes through what she's going through in this process. And she's a very plain-spoken person. She's got some great realism during the interview, and sort of a quick wit. I mean, she's very quick. So, I think you'll enjoy the podcast.

Dr. Correa:
Yeah. And I'm looking forward to checking out this documentary.

Dr. Peters:
Hello, podcast listeners. I hope everyone is having a wonderful day. I'm really excited about our guest today. I want to welcome Kitty Norton to the podcast. She is the director of a documentary called Wine, Women, & Dementia. And in this first feature film of hers, she uses the lens to see how patients with dementia are living and how their caregivers are impacting and coping with caring for their loved ones with dementia. The film has been lauded across multiple film festivals, and has opened the eyes of audience members about dementia and caregiving. She has collected a rich caregiver community that allows them collective support of each other. And Kitty, I'm so glad to welcome you to our podcast.

Kitty Norton:
Well, thank you so much for having me, Katy. I'm really happy to be here.

Dr. Peters:
And where are you joining us from today?

Kitty Norton:
Portland, Oregon.

Dr. Peters:
Oh, I love Portland. It's so lovely there. Now, can you tell us a little more about yourself? I gave a short introduction, but just tell us more about you.

Kitty Norton:
Yeah. So, my mom was diagnosed with vascular dementia in 2010, and my father vowed to take care of her until the day she died. But unfortunately, he died first. So in 2016, my sister and I began co-caring for my mom. She was about mid-stage in her progression. She couldn't live by herself anymore. So I was living down in LA at the time, I had started a new career in post-production. And I just said, "I got to go home," "I got to go home, and live with mom, and take care of her." And my sister lived on the Oregon coast, so she would come in and take two or three days a week depending on her work schedule. And my boyfriend and I moved into my mom's basement, which just thrilled him to no end. And that's how we did it. And we took care of mom from 2016 until she died in March of 2021.

Dr. Peters:
Oh, my gosh. And you mentioned, before you had that move, and really that dynamic life-changing experience of moving in with your mother packing up the boyfriend, you mentioned that you were doing post-production. What is that?

Kitty Norton:
I had changed careers trying to get into an editor's chair. And an editor for TV, films, I was really interested in maybe being able to start editing films. I was down there for four years and I got to an assistant editor's chair, and that was pretty good for four years. And the last show that I was hired on was the first season of This Is Us.

Dr. Peters:
Oh, wow!

Kitty Norton:
I know, I was so excited. But my father got sick in July of that year before production even started on that show. And by the end of July, he died. So, I had to give it all up and come home. But part of me understands that that's probably the last gift my father gave me, because as well as I was doing in LA, and as many cool things as there are down there and people, I'm a Pacific Northwest girl. And I don't know if I could have ever left because it was the first time in my life I was making actual money, but that brought me home. And I needed to be here.

Dr. Peters:
Oh, well, I think that everybody has a different journey, and you had those experiences I guess in LA. And I agree with you, the Pacific Northwest is amazing. Can you talk about the differences of your journey with your dad's passing versus the journey with your mother's passing?

Kitty Norton:
Absolutely. The way my father died really informs a lot of the way that I came into dementia family caregiving. My dad died, from diagnosis to death was three weeks. So, he had been having issues, he was trying everything to figure out what was wrong with them. And this had probably started about a year prior, and the doctors just couldn't find it. Everybody was looking at his heart up, and what it turned out to be was pancreatic cancer. And because he was caring for my mom, as hard as he tried to find a diagnosis, he was also exhausted. She took all of his focus. And I think to myself, "I wish I would've been here." Maybe pancreatic cancer was going to kill my father, but maybe if he could have got a diagnosis sooner, maybe he could have had a couple more years; maybe if I'd have been here at the time, he could have had more energy to take care of himself.
And that was really hard, because when somebody dies in three weeks, there's so much unsaid, there's so much undone. So when I walk into mom mid-stage dementia, it's like I know by the time this journey is over, I will not regret a thing. I will do everything I can for her, I will be here in every way I can for her. It may not be the greatest job I ever do because I'm not a natural caregiver, but I know a lot of people think of fast death as preferable to a long death. And I don't know if my mom would agree with that, because I feel like she lived her life up until the very end. It was a very different life, but it was hers. And I would say for myself, I still mourn my father. And my mom, I know she went off to the next adventure with everything I had to give her.

Dr. Peters:
Well, thank you for sharing that. And again, I'm so sorry for the passing of your father and your mother, but I think this is going to resonate with so many of our listeners, where the coping is really so different from when somebody dies really a sudden, really tragic death. All death we can say is tragic in its own form, but if you do get to share experiences, and you have some kind of expectations, having that time with your mom really informed, not only your relationship with her and you, but also so many others because of the film you made.
Now, can you tell us more about the film, Wine, Women, & Dementia? First of all, I love the title. So many things about that are great. But tell us more about the film.

Kitty Norton:
Sure. Yeah. So, because my sister and I split up the week, and dementia is unrelenting, it's 24/7, but I would have two or three days off, because my sister would be here and she would be taking care of mom. And I thought, "I really need something creative to do. My whole life has been now to my mother's happiness, and I need something for myself." So I started writing a blog. And I've always enjoyed writing. I enjoyed putting together the images that went with each post. I wrote very personal stories about what the swing and dementia lifestyle is like. It wasn't the research, it wasn't the new pill coming out. It was like, "You know what? I picked up poop six times today. How's everybody else doing out there?"
It was the funny stories. It was the horrible stories. It was the stories sometimes about, how do you process the morning that you wake up and you wish your mom had died in the night? That's tough stuff. And it was such a release for me to write that. I don't even think I understood at the time that it was so helping me process, but it was also attracting a community of caregivers who had also decided, "I can either sit in this tragedy, or I can cowgirl up and get to work, and figure out how to live life on the end of life journey, for both myself and my person." And so this community developed around it of all of us seeking the same narrative that wasn't cry for a decade, because this is so horrible, and we can't deal with it. And it was like, "Let's get going here."
And through that, I met people all around the world, caregivers who became really good friends of mine. And there were five in the US in particular that I thought, probably started thinking about the month before mom died, I thought, "Once mom goes, I'm going to get in my car and I am going to drive and see these people. I'm just going to call them and say hey." "I got a bottle of wine and a box of pizza. Can I come over and let's just talk? I just need to talk and thank you for everything you've done for me."
And I got to thinking about it and I thought, "Well, maybe those conversations would be very helpful for other caregivers." And that's how it came to be a movie. I decided I could afford to hire a camera person, and a sound guy, and paid my boyfriend 500 bucks to go with this camera. And I bought a used RV, and I plastered mom's face all over it. And one of my friends came with me on the road trip and we went 7,500 miles, and just had a blast meeting these caregivers who we'd never met in person. They'd become my virtual friends, and such a great support, but we'd never been face to face. So, it was amazing.

Dr. Peters:
That is truly amazing. And at your blog I have that it was the Stumped Town Dementia blog. Is that correct?

Kitty Norton:
Yes. Yeah.

Dr. Peters:
And you mentioned, I love this, that you focused on tales about dementia life, not dementia death. Can you tell us a little bit more about that philosophy and sort of what it meant to you?

Kitty Norton:
What it meant to me was, all of the media in 2016 when my sister and I took over, the books, the movies, the articles, all of it was just, "Oh, my father's turning into a zombie," or, "Oh, my husband's now the Walking Dead." And I was taking care of mom who was mid-progression, and sure, she was wildly different as Dementia Gloria, but she was still living life. And in some aspects of her life, she was even more lively than she was before dementia. So I was like, "How are people even coping if this is the only message that we're giving?" If these are the words that we're supposed to use to talk about this journey, what a disservice to the fact that my mother is flirting with strangers in the grocery store all of a sudden, would've never done that in her entire life. She's so open, she has no inhibitions anymore.
When she went through the rage stage, she got really good at throwing pottery at us. So things got very lively. And I couldn't sit in that tragedy narrative, and I had to really look at mom and say, "Hey, if this is how her life's supposed to end, then stop fighting it and start figuring out how to live with it."

Dr. Peters:
And do you feel that when you sort of put your thoughts out there and you put out your film that, instead of people seeing that narrative of, "The patient has dementia, they go to a nursing home and is just depressing," but that people really wanted this uplifting sort of, I guess, really truly day-to-day picture that the audience came out and said, "Yeah, this is what we needed"? Is that what you got from that experience?

Kitty Norton:
I would say half-and-half. I think I've provided something both written and now in a film form that half of the caregivers in the world have already figured out. This is just the first time they've seen somebody else put their stories out there. And I think the other half of the audience is finally like, "wow, okay, there's a different way to do this. And maybe I don't want to do that exactly how these people in this film did it, but that opened up a lot of ideas that will fit in our journey." So I think I both became a spokesperson for people who already were thinking differently about dementia, and living differently in dementia. And the other people just kind of found a new way, found a way to say, "I'm not alone, and I don't have to just be depressed all the time, and I can start celebrating who my person is instead of just regretting it every day."

Dr. Peters:
I love celebrating the person that you're caring for. I think that's so important. And again, you were able to have time to do that, which I think is great. Now, what did you learn? You've had this blog, you got in, I guess, is it an RV?

Kitty Norton:
Yeah.

Dr. Peters:
Across the country. What were some of your favorite lessons that you learned from your fellow caregivers?

Kitty Norton:
Oh, gosh. So there was some funny things. I had thought to do this. I was talking to Roseanne Krakorin, she was in Trappe, Pennsylvania. And during our talk that night, she told me a story about how her mom was really, really angry one day. And Roseanne didn't know how to deal with that because I just had not been a part of her mom ever, and this was one of the first times she had encountered that. And so she got the idea to leave her mom's room, change her shirt, go back in, and her mom was like, "Where have you been?" I thought that was brilliant. I was like, "I never thought to do that." And I since have heard from other caregivers who was like, "Yeah, I used to go in and put my dad's hat on and his trucker hat, and then come back in and she'd be so happy to see me before she just hated me." And I was like, "Wow, that's smart."
Veronica taught me a lot about how to think differently about dementia. She and I laughed about the day that she woke up and her mom had come into her room and she was wearing 16 necklaces, because her mom just decided she needed to be fancy that day instead of frustration. She met it with humor, and laughter, and her mom laughed, and they found it funny. And I told the story about the day I had to peel five pairs of pants off mom, and I was like, "I couldn't even figure out how she'd managed to put all those pants on."
I don't know. It was such a sharing of stories. And there were so many times when one of us would be telling a story and the other one would go, "Oh, my gosh, that was us too," "Oh, we did that too," "Oh, I didn't know that was a thing, but we were doing it and I thought, 'Well, maybe this is all wrong.'"
Dementia is a very creative journey, and you need all of your smarts to rethink it, to problem-solve, to solve the same problem over and over and over again with different solutions, because dementia is going to zig just when you think it's going to zag. And it was amazing.

Dr. Peters:
Yeah. I just remember recalling some of my patients and their caregivers that they had to contend with dementia and some changes in behavior. One of my favorite stories is I had a patient that I saw that had dementia, and she pretty much would not talk to her daughter. She just was a verbal. But whenever she saw a new person, she would become chatty. And so her daughter just loved to introduce her to new people, because it was like mom would wake up, and chat, and become engaged. And all she really wanted to do was hear her mom's voice. But instead being sad about it, it made the caregiver, which was her daughter, want to engage with new people. And also be with her mother in that situation together, which I think she really put really a great spin on it, because she would say thank you to people, "Thank you, because my mom won't speak to me, but she'll speak to you."

Kitty Norton:
Yeah, yeah. So many people moan about the loss of their person. And I did that too for a certain amount of time. But then eventually it's like, "Well, who am I really mourning? Am I mourning the loss of myself before my mom had dementia? Am I mourning the loss of my freedom? Am I mourning the loss of..." Well, I thought I was really patient person, and dementia just taught me that that was a wrong assumption. "Why am I mourning her? She's not mourning her. Not anymore. She's living her life." So, how long am I going to sit in this space instead of rethink things like, "Hey, my mom really does love to talk. She doesn't want to talk to me anymore, so what do I care? Let's just bring more people into the situation so she can talk."

Dr. Peters:
I totally agree. Now, speaking of talking, you encourage caregivers to live out loud. Tell us a little bit more about that.

Kitty Norton:
Community is so incredibly important. My mom's dementia didn't kill my father, but because he was so focused on her and he made their life so isolating, he didn't have any support when he needed it to find his own diagnosis. And that happens a lot. It's not unusual for a caregiver to pass away before their person living with dementia does. So A, you need community because it may just save your life, and you need community because you need help processing this; and you need community because on those terrible, terrible days, you need your person, your friend, who knows exactly what you're going through, to just put a spin on it. Put a spin on it that can make you chuckle at yourself, or at the situation, or give you an hour just to cry about it and then move on. You need people. And living out loud, no longer being intimidated by the stigma, opening up your life, opening up your dementia person's life. I wasn't hiding mom anymore.
I know that there's these little cards that people can give out saying, "Oh, please be patient. My person has dementia." And I think they're probably very helpful in some situations, but I was having none of that. I was like, when my mom was just going through Nordstroms and licking the lotion that people would put in her hands, I wasn't going to pass them a card. I was just like, "Oh, well, my mom has dementia. She just does things a little differently now." And they would finally giggle, and mom would giggle, and I would giggle, and that was the end of it.
People who have cancer, they get to go out and be people. And they get empathy. I'm sure people disappear on any end of life situation, but I don't think it happens near as much as it happens in dementia, where people somehow make it all about them. "I can't be a part of this journey for my friend because it's too painful for me." It's like, we need to just cut that off at the knees. It's like, "Really? Is it painful for you? What do you think they're going through?"

Dr. Peters:
Absolutely.

Kitty Norton:
"What do you think the person caring for them going through? How hard would it be for you to just show up for a dinner once a night, once a week, or something, just to give both of them a break from just each other? Is that really that hard for you?" We'll open wine.

Dr. Peters:
And we'll watch a movie, and we'll watch a documentary, right? We've got it right there, Wine, Women, & Dementia ready to go.

Kitty Norton:
I think we're all braver than we want to let on. And for some reason, dementia just feels like it's an excuse to just be scared.

Dr. Peters:
Well, I can tell that you are not scared, Kitty. And I think what you're doing is you're allowing people to say, "This is not normal, but A, be normal is not bad." And we all can have different kinds of experiences. Now, you're one heck of an advocate. I will say kudos to you. I know that your mom has unfortunately passed, and again, we're sorry about that, but what is now the next step for you? Are you going to make more films? Are you planning to be more of an advocate? What's up?

Kitty Norton:
I would love to do all of that. Actually, I don't want to make more films. What I would really love to do is to take the blog and turn it into a series. I would love to create a half hour dramedy. Because I go back and read those posts and I'm like, "This is a show. I see this. I see this show." I want to absolutely continue advocacy. Being an independent filmmaker is not very profitable, and I'm actually potentially not going to be in this space any longer because of finances, because I may need to go get a job with healthcare, and that's going to sap everything. But that's life. That's how things go.
So definitely, I'd love to do more conferences, I would love to see the film used for training purposes. And I'd love to keep telling the tales of this, because I guarantee this is the hardest thing anybody will ever do, helping someone to the end of their life. But it's still life. And I think people need permission to say... or not permission, they need to see somebody else say, "I'm not going to take this anymore. My journey and my mother's journey deserves your attention and your participation as much as anything else in your life. So, let's go."

Dr. Peters:
I'm ready for the dramedy. Let's do it. I vote on that.

Kitty Norton:
Okay. That's my dream. Yeah, we'll see. We'll see. I don't know what the future holds.

Dr. Peters:
I think it's going to be bright Kitty. That's what I think. And I want to thank you so much for sharing really everything, being an open book about your experiences, about your parents, about your film and your advocacy. Thank you so much for what you do for caregivers and for patients with dementia. And thank you so much for being on our podcast.

Kitty Norton:
Absolutely. And you can go to winewomenanddementia.com to purchase the film, we've got DVDs and Blu Rays, and it'll be available for video on demand. It's currently the one-hour version, is currently on pbs.org and the PBS app, and we're also in cities markets all over the country. So, you can go to the site and see if it's playing in your area. Thank you so much for having us, and good luck, caregivers. It's a tough journey, but I know you got this.

Dr. Peters:
You got it, caregivers. Thank you so much. Have a great day.

Kitty Norton:
Thank you.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Dr. Peters:
Hello, Brain & Life podcast audience. Of course, thank you for joining us today. I am Dr. Katy Peters. I'm your co-host, and I'm so excited to introduce our medical expert, Dr. Victoria Pelak. Dr. Pelak is a professor of neurology and ophthalmology at the University of Colorado School of Medicine, with a subspecialty fellowship training in both behavioral neurology-psychiatry, and neuro-ophthalmology. She specializes in assessing and treating patients with visual problems related to neurologic disorders, but then she lends her clinical expertise to visual symptoms that patients have when they have Alzheimer's, another condition called posterior cortical atrophy, Parkinson's disease, and similar disorders. Today, we are very happy to have her educate us on Alzheimer's disease, and we'll also talk about her really sub-subspecialty with ophthalmology also.
Dr. Pelak, welcome to the Brain & Life Podcast.

Dr. Victoria Pelak:
Oh, thank you very much, Dr. Peters, and I'm thrilled to be here.

Dr. Peters:
Can you tell us, I gave a brief introduction, can you tell us a little bit more about yourself and where you're joining us from today?

Dr. Victoria Pelak:
Absolutely. I am professor of neurology and ophthalmology, as you mentioned, at the University of Colorado School of Medicine. And I've been here in our department for over 25 years. And it's happened in a blink of an eye. It's happened so quickly. And so I am joining you from sunny Colorado, in a city where our major health sciences center is and the School of Medicine is, which is in Aurora, Colorado.

Dr. Peters:
Wonderful. Do you have snow on the ground? Do you go skiing? Do you get a chance to brave those mountains?

Dr. Victoria Pelak:
Only on a certain side of the street do we have snow where the sun doesn't shine. Otherwise, the other side of the street where the sun shines is completely cleared of snow. I am no longer an active skier, but I love enjoying our mountains. Absolutely.

Dr. Peters:
They're so beautiful. And so thank you for joining us all the way out west.

Dr. Victoria Pelak:
Absolutely. Happy to be here.

Dr. Peters:
And so I find your specialization really fascinating with the dual worlds of ophthalmology and also behavioral neurology, which consists of Alzheimer's disease. We know that you specialize in dementia, Alzheimer's disease. For our listeners, can you just give us the basics, the 411 about Alzheimer's disease?

Dr. Victoria Pelak:
Yes, for certain. So, Alzheimer's disease is the number one cause of dementia. It's considered a neurodegenerative disease, which means that Alzheimer's disease really causes a slow and progressive loss of brain cells over time. Now, it primarily affects people over the age of 65, so we often refer to that as a late onset. It can affect people younger than 65, and we'll refer to that as an early onset. But the majority of people are over the age of 65. Unfortunately, it slowly robs people of their memory, of their cognitive performance, of their language, of their perceptual abilities. And eventually, Alzheimer's prevents people from being able to do things independently, such as everyday activities, driving, taking care of yourself. And so care partners and caregivers become really important in helping people through the later stages of disease.

Dr. Peters:
And what is really the cause? I have patients that they come to clinic, they're worried about dementia may run in a family. What are the causes?

Dr. Victoria Pelak:
So, a really simple answer is that we do not know for certain. But that should not be the takeaway by listeners, they should keep listening to the rest of this answer, which is, we've made huge strides in really understanding the many factors that are involved in developing the disease. And we will probably never be able to say there is one cause, and here it is. So, we should talk about to fully understand all of the factors that are combining to create the disease. So, just to give you a sense, there are four top contributors.
One is simply aging, as you heard me say a little bit earlier. That's a disease that starts typically later in life. And then two, there are certain genes that are important in the process of causing the disease. They're called risk genes, meaning they don't automatically set you up for developing Alzheimer's, but they increase your risk. And then the environment, we're learning more and more, even things like pollution contributing to dementia over time. And then an unhealthy lifestyle. And that's not to say that it is somebody's fault in any way, but the unhealthy lifestyle are things that are really important for considering the causes of dementia, and in particular Alzheimer's disease.
And so what we usually see is this accumulation, or build up, an abnormal proportion of these proteins that are responsible for Alzheimer's disease. Then, with this buildup, there's a breakdown of the structures inside brain cells, and then eventually this breakdown inside the structures of brain cells results in loss of connections between brain cells, and then finally death of those cells. So we understand a lot about the biology of what happens and what are the contributors, and so we really don't think there will ever be an answer that involve just one cause.

Dr. Peters:
And that's so hard, because I think when patients and caregivers come to a clinic, they want to know a cause. And I think that one of the things that I've noticed recently just referring my patients or their loved ones to a memory disorders clinic, is that the way they're diagnosing and detecting patients has really changed since when I trained, which was normally, I remember, and you'll have to educate me, it was neurocognitive testing, or neuropsychiatric testing. But it sounds like there's a lot now that we can do to better detect what is Alzheimer's.

Dr. Victoria Pelak:
Yes, absolutely. And I think one of the biggest confusing terminology that we hear both patients and their family and loved ones struggle with, is the use of the term dementia versus Alzheimer's disease. So with dementia, that's really an umbrella term, and it's not specifically a disease. It is really a state of health. And that typically means that there's cognition and memory issues that don't allow you to take care of yourself independently. And so we usually start with just describing that to patients in their family when they come in with complaints, and then go about the process of making a diagnosis of, "Well, what is causing the cognitive symptoms?"
And with Alzheimer's disease, you really hit the nail on the head, which is, everything has changed over the last few years, to especially during the last one or two years, that we have very different approach. It used to be you go to your doctor, you tell them you're having problems with your memory, your primary care doctor can run a few tests to make sure that you don't have another disease unrelated to the brain that's causing problems with memory. So, is your heart okay? Is your liver okay? What about kidneys? Are those okay? Do you have vitamin levels that are in the appropriate range? Have you had a stroke? And so they'll investigate all of those things. But everything has sort of been turned upside down now, that we always recommend when searching or questioning whether somebody has Alzheimer's disease, that a person is sent to an expert neurologist to evaluate you, and you'll receive additional testing like neuropsychological testing that you spoke about that is still critical, but also blood work, brain imaging, and then the search for biomarkers of these abnormal buildups of proteins that are specific for Alzheimer's disease.
And we may even involve specialized brain scans where you really attach or take a substance that binds to proteins within the brain, and then do a specialized image to see if you have those proteins inside the brain that would signal or be the hallmark for Alzheimer's disease. And we also now do spinal taps quite regularly to look for those proteins that abnormally build up to signal Alzheimer's disease.
And then lastly, sort of new on the block, which probably will be instrumental in decreasing the amount of invasive tests we do like spinal taps, but blood tests are really not far away from being the go-to test to help us detect Alzheimer's disease in the brain. We are doing that in some people already. So currently, because it's not easily paid for by insurance, it can limit the number of people that can get the blood tests done. But people who will or can afford to get blood tests done, we can use the blood test to help interpret the other data, which includes the neuropsych testing, the neurologic evaluation, the brain imaging. We can put it all together to make a diagnosis of Alzheimer's disease.

Dr. Peters:
I mean, I think, all in all, that sounds very hopeful to me, because when you can detect something maybe earlier, or detected it in a blood test that isn't invasive, and you have more confidence in the diagnosis, I mean, I can imagine that's only going to give way to better treatments.

Dr. Victoria Pelak:
Absolutely. And it is so important to be able to see disease before it impacts your ability to function, because not only just preparing for what's down the road, is that there are current treatments available for the very early stages of Alzheimer's disease.

Dr. Peters:
I just got a call from a colleague who wanted to get a friend of theirs into clinic, because they were concerned because they had relatives that had Alzheimer's disease. And the fact that we can provide those newer tests is really exciting, and I think it will really make treatments and research better for the future for our patients, and for their loved ones.

Dr. Victoria Pelak:
Absolutely. And one of the things that are changing along with what you just mentioned, is that the disease is sort of coming out of the shadows a little bit. So, the stigma associated with it is being broken down, and that's because of the hard work by patients and caregivers to really come out and say, "I have Alzheimer's disease, I'm living with Alzheimer's disease, and there's no need to walk gently around me. I have the disease and my doctor is helping me cope with it, and I may be able to go on a treatment," et cetera. And that stigma can only be broken down by increased awareness, early detection, and then the brave people that have Alzheimer's disease who are willing to share their diagnoses.

Dr. Peters:
I agree. And you mentioned sort of the treatments. So, can you tell us about some of the treatments that are available?

Dr. Victoria Pelak:
Absolutely. And this has all changed dramatically since 2023. So, we now have two treatments, one that was approved by the FDA in July of 2023 called Lequembi, and then one that was just improved in July of 2024 called Kisunla. And both of those drugs really do very similar things, with very slight differences between them. But both drugs remove abnormal buildup of the amyloid protein in the brain, which is the protein that's pathognomonic for Alzheimer's disease. And by that I mean it is affiliated and necessary to be present in abnormal amounts before you can make a diagnosis of Alzheimer's disease. And so the drugs both attach and then release the proteins from the brain substance itself, and they're both given by infusions. And typically over, right now, the standard is over a period of 18 months.

Dr. Peters:
Oh, wow. That's a lot to commit to for both patients and caregivers.

Dr. Victoria Pelak:
It is a lot to commit to, because one of them is given every two weeks, the other is given every month. And so they have to come into a specialized infusion center where nurses are trained in detecting infusion reactions, treating infusion reactions, and understanding the protocols. One of the most important parts of the protocol is monitoring for side effects of brain swelling, or brain bleeding. And we use both MRIs as well as discussion with patients and caregivers regarding symptoms. And so anywhere from four to five MRIs have to take place during treatment to screen for those conditions, because many patients do not have symptoms when there's a mild side effect of bleeding or swelling. And by detecting it early, and then stopping the treatment either temporarily or permanently, we can prevent symptom onset related to those side effects.
So, it is a huge commitment for 18 months, as well as putting yourself at risk for side effects. So yes, big commitment on the part of both people with Alzheimer's, as well as their family members or caregivers.

Dr. Peters:
Absolutely. Because you're going to have to partner with a great provider that's doing it appropriately and safely for those patients. But then the caregiver burden is so clear for that, along with all the other symptoms. What can you say to how we support our caregivers?

Dr. Victoria Pelak:
It's so important to support caregivers. And in this day and age, it's becoming more and more difficult for physicians to do that during visits, for many different reasons. And the Alzheimer's Association has, at its core of its mission, is supporting people with Alzheimer's disease and their care partners and family. And they have available 24/ telephone number, they have online resources, of course, and they have in-person educational meetings and support groups. And so one of the first things I do is let people who have Alzheimer's disease and their family members and care partners know about the incredible resources affiliated with the Alzheimer's Association. So, the Alzheimer's Association not only supports the families and people with Alzheimer's, but also supports a lot of the research that moves the field along. So, their job is multifold, but where they really are, what I would call stellar in their performance at, is being able to meet our patients, as well as our care partners where they are in their journey.
So if it's just learning about it, and they don't want to go to support groups, Alzheimer's Association is there for them. If they're in the later stages and have never reached out, Alzheimer's Association is there for them. So, that is probably one of the most important points that we try to get across, is that physicians these days is very difficult to support caregivers during appointments with things other than, "Here's some resources and some information and some words of encouragement." But support groups can really fill those needs as well as, as I just mentioned, the Alzheimer's Association can help fill those needs.

Dr. Peters:
So, that's a great message to our caregivers. Definitely seek out support, seek out the support of your physician, your providers, the support groups, the Alzheimer's Association, and do it often, frequently during that time period, all that trajectory for those patients.

Dr. Victoria Pelak:
Exactly. We've had some people who do that at the very beginning, and will circle back to me, and some of the questions and issues that they're facing. I mention the Alzheimer's Association again, and they say, "We did that at the beginning, and support groups are just not necessarily for us." I always remind them that a lot of people feel that way. Maybe they don't want to sit in on a support group, but the Alzheimer's Association is so much more than that. So, every stage there's something for you. And as a caregiver, care partner, family member or patient, they're there to help you figure out what that is, especially when it comes to education and preparation for the next stages.

Dr. Peters:
So, when I have patients or caregivers that come into clinic, really the key symptom that they mention is usually my loved one is having memory problems. And then there's usually a conversation of like, "Well, everybody has memory problems to some degree." But then, there's sort of nuanced symptoms with whether it's visual spatial difficulties, or maybe they get lost, or maybe they're having problems with their executive functioning. But what I love is you're also trained in ophthalmology. So really your area of research is what's happening to the vision in our patients with dementia, particularly also with a condition called posterior cortical atrophy. So I would love to learn more about what you do and what is special about the vision in these patients.

Dr. Victoria Pelak:
Oh, yes. Thank you so much for that question, as it's my passion to talk about. But I do want to specifically mention, as you said, the majority, and we think that's about 75% of people with new symptoms due to Alzheimer's notice forgetfulness. And it is very hard to tell the difference between, "Is this just aging? Am I under a lot of stress right now? What's happening to me to make me forgetful?" Or, "What's happening to my wife or husband, or my mom or dad, that's making them forgetful?" And people should never be afraid to bring somebody into the physician to ask about that. And if they don't get good answers, ask for a neurology consult. Because as you and I both know, we're in tune to what might be normal forgetfulness under times of stress, or related to age, and what might be early signs.
And so we always want people to seek out help to figure that out. But you're right, in this other 25% of people, it can start with something other than memory. So, it can start with language, it can start with visual perception problems, or reasoning, or behavioral changes. Mood changes are very common as an early sign, or a new symptom. So if you've never had depression or anxiety before and suddenly you're noticing that, and you can't understand why, or your loved one notices that, or you notice that in a loved one, then that's worth getting checked out too. But when it comes to vision, it is highly variable. So some people might notice visual symptoms related to just not being able to read like they used to. Maybe they're getting lost while they're reading text, moving from one line to another, or they have to reread, or they have to give somebody a text that they're reading. So, whether it's in a book, or an email, and ask them for clarification. So reading can be at the top of the list of problems that are visual that are related to Alzheimer's disease.
But it can also involve the spatial relationships, trying to understand how far away something is, trying to understand how to reach out for an object without missing it, being able to see things that are directly in front of you in a cluttered environment. So a lot of people will mention that, "I don't understand, doctor says they're 20-20," but something right in front of them they will miss and not be able to see it. So those are some of those aspects of all visual perceptual problems that can bring people to an eye provider, yet they have normal eye function, normal eye exams. And so that's where I will come in, or our fellow neuro-ophthalmologists, or behavioral neurologists, who can recognize that that's a brain visual problem, and not an eye visual problem.

Dr. Peters:
And I remember going to neuro-ophthalmology clinic, it's one of my favorite clinics, I would say Neil Miller trained me at Hopkins, and I loved working with him. He was so wonderful.

Dr. Victoria Pelak:
You were trained with one of the best.

Dr. Peters:
And I almost finished specialties because it was just so much fun and so fascinating. And again, I love talking to our neuro-ophthalmologists that do such a great job with our patients. You have all those big machines, there's also some really cool technology like optic coherence tomography, and also I'm sure specialized imaging. Do you utilize any of those tools?

Dr. Victoria Pelak:
So, most of the time I would say no, but there are some circumstances, especially our excellent behavioral neurologists, we all have subspecialty areas. So we might have a behavioral neurologist, you would think, "Well, that's very specialized." They're specialized in understanding memory, cognition, language, visual perception, all of these things. But we may have one that specialized very much in language, and they will see a person and say, "Oh, this person has an eye disease. Could some of their visual complaints be from their eye disease?" And they will send them to me, and then we will use some of those technologies, like you mentioned, OCT, or ocular coherence tomography. That technology can image the retina and image the eye in a way that we never could 10 years ago. And so that'll be able to tell us detailed information about the structure of the retina. And we can sometimes use that information to say, "Okay, eyes are interfering with being able to perceive information at the level of the brain accurately and well. And so we think this person's macular degeneration is contributing to their ability to process visual information."
So we do sometimes use those tools, but usually it's the same type of tools that you might be used to in your experiences in a behavioral neurology clinic, which is interviewing and then testing with visual tools that help us know how somebody's interpreting information.

Dr. Peters:
And I'm sure just giving that information to the loved ones that there is a challenge with this visual symptom in the context of also having dementia, just gives them some clarity, and can give them some support.

Dr. Victoria Pelak:
Absolutely. And we sometimes see, and people will tell us as well, sort of a light bulb going off. And feeling relief and just knowledge about what the problem is. So, the one example that I gave you earlier of not being able to see things right in front of you, that can be frustrating to family members as well as to a person that's experiencing that. And that frustration can build to the point where people have to walk away from each other, or we'll argue, and when you know, "Okay, I'm not paying attention, I'm not being obstinate, I can't literally see something that's directly in front of me because of my brain issue and not because of a personality issue, or because I want to argue with you or fight with you," or whatever it may be that feels that way to a person on the other side who's not experiencing that symptom.

Dr. Peters:
I think it really is about, because it sounds like every patient's journey is a little different, and every caregiver's journey is different.

Dr. Victoria Pelak:
Yes.

Dr. Peters:
So, I just appreciate that you shared this all with our listeners today, Dr. Pelak. Thank you very much for what you do to support our patients and their caregivers. And of course, thank you to our listeners.

Dr. Victoria Pelak:
Oh, well, thank you so much for having me. We also have an online support group for those not in Colorado, as well as an in-person support group for those with visual symptoms related to Alzheimer's disease. It's called Colorado Posterior Cortical Atrophy Support, which is a mouthful, but essentially it's for anybody with visual symptoms related to a neurodegenerative disorder.

Dr. Peters:
Wonderful. Thank you.

Dr. Victoria Pelak:
Thank you.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests, along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org. And leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katy, and me, and the Brain & Life Magazine, on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City, and online at Neuro Dr. Correa.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina, and online at Katy Peters MD-PhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each strive with our own abilities every day.

Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find the Brain & Life Podcast. See you next week.

Finding Community in Caregiving with Kitty Norton

Additional Resources

Other Brain & Life Episodes on this Topic

Follow us!

Episode Transcript