Spotlight on Care: Alzheimer's Caregiving

Being Patient with Deborah Kan

UCI MIND Season 1 Episode 55

In this episode of Spotlight on Care, hosts Virginia Naeve and Steve O’Leary are joined by Deborah Kan, the founder of Being Patient , a leading digital resource for Alzheimer’s and dementia information. Drawing from her personal experience as a caregiver and her background as a journalist, Deborah explains how her platform serves as a comprehensive roadmap for families through three core pillars: demystifying complex research, hosting live "Brain Talks" with medical experts, and sharing authentic first-person stories to reduce stigma. The conversation also explores innovative tools available on the site, such as interactive diagnostic guides and AI-powered "Care Bots" designed to provide immediate support.

To learn more about Being Patient and access these resources, click on this link here: https://beingpatient.com/.

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Steve:

From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia:

Hello, listeners. This is Virginia Naeve. Several months ago, Steve and I interviewed Deborah Kan. Some of you may already know who she is. After her mom's diagnosis with Alzheimer's disease in 2014, Debra created an online resource for Alzheimer's and dementia information called Being Patient. Before our previously recorded podcast begins, Steve and I felt it was important to tell you that Deborah's mom, Alvera Kan, has recently passed away. We haven't changed this podcast recording in any way, but we wanted you to know that this has happened. Our thoughts and prayers are with Deborah and her family. We also want you to know that Deborah remains more committed than ever to continue her work with Being Patient, which has become a trusted resource worldwide for millions of people impacted by dementia. Thank you. Now on to our podcast. Welcome to Spotlight on Care. I'm Virginia Naeve, and today, my co-host, Mr. Steve O'Leary, and I are welcoming a very important person in the world of Alzheimer's information. Her name is Deborah Kan. Deborah is a journalist and former editor of The Wall Street Journal. When her mom was diagnosed with Alzheimer's disease in 2014, Debra found herself searching for answers about what was happening to her mother's brain. She became frustrated with the process of trying to gather information and make sense of it. Deborah knew she had to create an easy way for people to get good, credible information about dementia and brain health. Hence, the website Being Patient was born. Being Patient is her website platform solely dedicated to providing information about Alzheimer's and other dementias in a language we can all understand. Today, Being Patient has become a global media organization with millions of readers in more than 200 countries. Welcome, Deborah. We're so glad you could join us today.

Deborah:

Thanks so much for having me. It's great to be here.

Virginia:

I'm glad you could make it. Deborah, tell us more about your story back when your mom was first diagnosed.

Deborah:

So I was working, as you mentioned, at The Wall Street Journal. I was based in Hong Kong at that time, and I got a call from my sister. We kind of had been worried about my mom's memory, but, you know, it's always that, "Oh, is it just normal aging? Is it something more serious?" But we got really worried when she was really losing her ability for numbers, and so things like the house alarm code that we hadn't changed since I was a child, she was forgetting repeatedly, and when her ATM card got eaten by the bank machine three times in a week, we're like, "Uh, that's not right, something's wrong, and that was kind of the red flag for us. So I remember she was going through some cognitive assessments, and then my sister called me while I was at work one day and said that Mom's been diagnosed with Alzheimer's. And like so many people who are entering this journey, I didn't know a lot about Alzheimer's. I just knew it was a disease that primarily impacted older people, and it was a disease of the memory. So I did what everyone else does. Your first reaction is to Google Alzheimer's to try to find out, well, what's available? What do we know about this disease? What has research learned in the last decade, and where is it heading? It was really just because of my own family circumstances that I started to ask all of these questions, and surprisingly, it was really hard to find one place where all this information was. I might have mentioned before that my dad was a geneticist at UCSF, so I'm very familiar with the scientific world and how badly scientists can communicate to us laypeople. But still, I persisted, and I called, I started with Mike Weiner at UCSF, and I said, "I'm not calling to interview you for the Journal. I just really want to know more about research." So he was kind enough to give me time and tell me about the scanning research that he had done and understanding that beta amyloid appears in your brain a decade before, in some cases, you know before you see a symptom of Alzheimer's. So I started to pick up all of these little tidbits. One conversation led to another. I was talking to researchers in the US, in Europe and in Asia, where I was living, and I was really starting to put together a picture that was making me feel more in control.

Virginia:

Yeah, there's so much information out there, and you don't know what to take in and not take in. I know that your friends and family, while everybody became aware that you wanted to start something out there, you have an entrepreneurial gene in you somewhere, and you wanted to start something to make it easier for people to find this information. And friends and family asked you, "Why would you leave a job at The Wall Street Journal that you love?"

Deborah:

I'm quite spontaneous and impulsive, you could say. I spent my entire career building departments programming for big companies, and I was thinking in the back of my mind, it was time for me to start something on my own. This kind of fell in my lap because of my own experience with my mom. So yes, a lot of people were like, "What you're quitting?" You know. I'd never left a job. I'd been laid off before, like two times in my career, you know, they got rid of the show I was working on, or the department I was working in. And I guess that was a kind of a blessing in disguise, because I knew I always would land on my feet. I had that confidence, because it had happened to me twice before where I lost my job, and it was fine. Actually, I got a better job, right? And so I think because I had that type of—I had lost my job, I didn't fear being without a job. And at that time, I felt like, if I'm not going to do this now, when am I going to do it? And I was getting pretty obsessive on the topic, just because I was learning so much, I was like, I started to talk to patients and caregivers. I was talking to primary care doctors, I was talking to researchers. And I was starting to, kind of, in my mind, just calibrate this picture of what this resource could be. And I started to get really excited about it. So I went to my boss, Paul Beckett, at the journal, and I kind of told him I was thinking about leaving to start my own thing. And he and I got along fabulously. And he was a great boss. He very much celebrated my creativity. And he said to me,"Well, you can always come back." And those words were great for someone who was about to push off, right? Because it's true, I felt like I could go back if I wanted. But, you know, since then, the rest is kind of history.

Virginia:

So you had this thing in your head where you thought, I want to create a resource spot for people out there. How long did that take you to get up and running?

Deborah:

It was kind of like, launching a website is not easy. You do need a bulk of content in order to do so, and then you have to keep a constant flow, right? And so I guess where I started was I was defining what is this, what is it going to do? And I identified three pillars that I thought were really necessary to change the ecosystem of dementia, brain health. And those three things were one, explaining the research, as I spoke about, like journalists explaining the research, right? What do people need to know? Where's the research heading? How are diagnostics changing, like those critical issues that do relate to treatment and care? So that was number one. Number two, the majority of patients and caregivers who I spoke to, and I talked to dozens, told me they felt completely cut off from the experts who had the answers. So that one appointment with a neurologist six months or even every year, if that, was not enough to really answer the questions that they needed to help them with both care and treatments. What I did was I decided that I've done video all my life. It's very natural to me, so I thought, why don't we have a weekly live talk series where we're bringing the experts to our community? And that's a once a week thing every Friday, mostly Fridays, we have Being Patient brain talks or Being Patient perspectives. So that was the third pillar. The third pillar, as much as I was talking to the experts, I was learning just as much talking to people with a diagnosis or people who are caring for a loved one with a diagnosis. And I thought, why is this so siloed? I'm learning from the experts. I'm learning from the people with the diagnosis. Why can't all of these voices be put together to give somebody a comprehensive view of dementia? So that's where we decided Being Patient brain talks, we were going to launch Being Patient perspectives, and that's me, or one of my colleagues, interviewing people with a diagnosis, getting that first person, which is so critical in all of this, because I was, like, interviewing people with a diagnosis, and I always ask this question in hindsight, not when you were, like, getting lost, coming home from the store, or something alarming happened, where you were like, "Okay, now I need to go to the Doctor." I'm talking about like, 10 years back when a lot of these people had really demanding careers, were there any signs? And what's super interesting to me is we're starting to see a pattern in those answers. They're giving me kind of the same answer, which I was like, isn't that interesting, right? And then we talked to people with a diagnosis on how they were diagnosed or misdiagnosed, in a lot of cases, how they're living, and this is critical, how to live with dementia, crushing that stereotype of your life is over. You have to wither away in the corner, into oblivion. No way. We have interviewed so many people who are doing amazing things and have redefined their lives, in many cases, in a much more fulfilling way with dementia. So the power of those stories to communicate was amazing to me. I mean, it brought chills to me, you know? So I thought, how do we create something where everybody has access to this information, free of bias, right? We don't have an agenda. Our main agenda is just to get the information out there to people who so badly need it.

Virginia:

And you can find those interviews on your website, but you can also find them on the places where people find their podcasts that they like to listen to, correct?

Deborah:

Yes. So we do the interviews in video format. We have YouTube channel. We post them to our website. We create articles because people like to take in media in different ways, right? And so all of our interviews are turned into print articles as well. They will have the video embedded into them. You could go to our YouTube channel, you'll see Being Patient perspectives, Being Patient brain talks. We do a lot of video, we also do just featured video pieces on different patients, or technology, all different things. So we have a big library of videos. And then some people prefer podcasts. So, you know, you could get us on Spotify, etc.

Virginia:

I've listened to a lot of them with people who have been diagnosed. Honestly in a lot of cases, you would never know.

Deborah:

Yeah, I know. That's why I think it's so important to dispel this, especially because diagnostics are changing so rapidly. We have the blood tests now. There's new biomarkers that are constantly being identified. People will get diagnosis earlier, and so redefining the word dementia and what it's like to live with dementia, I think is critical, especially right now.

Virginia:

Especially right now. Okay, so that takes us into what I want to ask you about. On your website, you have what's called interactive guides. They are wonderful. Now let me explain to everybody out there, interactive meaning, let's say you want to learn about different dementias, which I'll have Deborah talk about. But there's a picture of a brain, and you click on various areas in that brain, and there's a voice that comes on and for either a few seconds, not even a whole minute, but this voice will explain what it is you want to know, and I love it. So let's start with your first interactive guide called different dementias.

Deborah:

So what we wanted to do here is, like we have so much content. You know, we're now almost eight years in, right? So we have so much content, we've interviewed the foremost experts, and we have with those expert interviews, as I mentioned, we have people with a diagnosis, right? And so I was like, what we need to do is create a format that's really accessible to people, that combines everything. So you're going to get the definitions, you're going to get, you know, pieces of our journalism, you're going to get the expert voice in there, and you're going to get somebody with a diagnosis right and combine it along specific topics. These guides go from science topics, monoclonal antibodies, blood tests for Alzheimer's to different dementias, how to get a diagnosis. You know, diagnosing dementia, where we're creating in the diagnosing dementia, we're going to the experts saying, "Tell us. Write the playbook. How do you diagnose? How do you tell the difference between is it Alzheimer's or another type of dementia right?" We're really trying to crystallize how people get that information in a quick way, like, instead of having to read five, six different articles, it's condensed into a highly interactive, very visual format to make it easy for people.

Virginia:

Absolutely, I think a lot of times people think, "Oh, you've got dementia, you've got Alzheimer's." But that is not necessarily true. Which leads us into the next interactive guide, which is diagnosis.

Deborah:

Yeah, so one of the things we did, we have a landing page called Diagnosis, and if you go to our website, in the drop down menu, you'll see Getting Diagnosed, and then you'll see Diagnosis. That Diagnosis page is meant because there's hardly a week that goes by where a friend calls or a friend of a friend calls and says, I'm worried about my mom or dad or husband or wife's memory. I don't know what to do. So this is kind of meant to be like, these are the different steps to diagnosis, right? So it lays out for you what are the all of the tests the doctors will give me to give me a diagnosis, and everything from cognitive assessment, neuropsych tests to PET scans are in there. We have expert interviews on Barack Gaster, who trains general practitioners on how to diagnose dementia. He's talking about what the major signs that are not normal aging are, right? So what do doctors look out for to make an assessment? And then we have all the types of medications that are prescribed for mild cognitive impairment or early stage Alzheimer's. And so we're really trying to kind of guide people through the journey so that they're, like, arriving to the doctors going, "Oh, okay, now I have all this baseline information." You know, when my mom was first going to the doctors, I didn't really know anything. I wasn't even present because I was living overseas, but I didn't know anything.

Virginia:

I didn't either. It's awful.

Deborah:

Yeah, I don't think any of us did, right? We didn't know anything, and so you're kind of at the mercy of your doctor. Some doctors do a great job of explaining things, but others don't. And so you're kind of at the mercy of that one hour, or even in a lot of cases, 30 minutes, right?

Virginia:

Or less?

Deborah:

Yeah. So what we're really trying to do is fill in those gaps to give people, arm people with the right information, so that their knowledge, their questions, will be better. They can start at a better point to utilize that time better, right? And so it's like, okay, sit down, take a moment, go through this site, learn all of this stuff, and then go to the doctors.

Virginia:

Perfect advice.

Steve:

I have a question. When we talk about diagnosis, one of the things we've experienced is this fear factor of people not wanting to be diagnosed, and their concern about learning about something that they're afraid of. You know, Alzheimer's is now the big C. It's now taken over in people's mind. So do you talk about that issue? And how do you get over your fear of being diagnosed?

Deborah:

100% and the best people to talk about this are people with a diagnosis. And so you'll see on our website a whole page called Journey to Diagnosis, and what that is, is people relating their stories of how they were first diagnosed. And those people, those warriors, I call them, who are moving the needle on the stigma, because I can say why I don't think the stigma should be there, but when you hear someone talk about how rich their life has gotten since they gotten a diagnosis, it speaks miles. I felt wholeheartedly the best people to tell that story and to reduce that stigma, were people who are living with a diagnosis. And it's worked. It's amazing. We get people now writing to us. So Journey to Diagnosis was kind of our thought, our team, we kind of put our heads together, and we thought, how can we get people to talk about this, not like it's a taboo, you know, you're wearing the scarlet letter. And so we were like,"Okay, well, media is now, so much as crowdsourced today, so let's start putting stories we already have up and asking more people to share them." And it's worked beautifully. I mean, we've had hundreds of 1000s of views on these segments, and sometimes we'll write an article, sometimes we'll do a featured video, other times it's just someone with their iPhone telling us, and we give them the plot, you know, we publish it on our platform. There's this gentleman who you know, some people you just meet, you're like, there's something about you that's really interesting and intriguing. He's 70 years old, but he looks like a young 70. His name is Greg Nelson, and he shared his story with us on his iPhone. Because of the Journey to Diagnosis, we basically did a call out. And he's like, made a video for us. He sent it to us. We put that video out in one day. It got over 25,000 views. And there was something about him that you're like, I want to meet Greg Nelson the way he talks about living. And he said something like, I learned to take it one day at a time, and I realize how much joy you can get out of one day. To me, that's how we're taking stigma away. We're putting these people out there, giving them a platform to say, this is my story, and actually it's okay.

Virginia:

The genetic section that you have on your website, the risk genes, people are always curious about that. What if I have APOE4, what if I have two copies? What if I don't, but I'm noticing weird things about my memory. What does that section on your website do for us?

Deborah:

We realized that we're sitting on a population of people who have E4 whether they're homozygous or heterozygous. We get a lot of questions around genetics, so we thought, let's put up a whole page, because what we do is we have information on starting from the should I get a test or not? What's the upside of getting a test? What's the downside of getting a test. Again the importance of having a neutral voice in all of this. In our journalism, we're not sitting on one side of the line. We're saying, These are the facts. Here are people who will tell you what the pros and cons are and how you should make that decision. Genetics is especially tricky, because it's not a decision made solely for yourself. It implicates your children and your children's children. So it's a serious decision, and for some people, it's been awe inspiring. They've changed their lives. They're living healthier. They're doing everything they can to prevent the disease. For others, they're like, I don't want to know. I don't want my kids to worry about this. And so to me, that's a very personal decision that shouldn't be made by anyone else? It should be solely because it's the right decision for you and your family. And I don't think anyone can answer that question other than the individual and their family you know, involving your family in the discussion. So what we wanted to do with the genetics page is just to make sure that we're keeping people abreast of what it's like to get a test. We have interviews with people who severely regretted getting a test, and we have people who actually are very happy they got tested because it led to a better lifestyle. So we have that balance of stories, but we also have experts saying this is why, or why you wouldn't want to know what your genetic risk is today. So we're kind of trying to put all of that information in one place, and then for the people who already know we're on top of all the genetic research, there's new variants being detected all the time, some in fact, that we've covered, that actually reduce the risk of E4 so if you're carrying one of those variants, you might not have to worry so much about E4 so there's new research going on all the time. There's gene therapy, where they're looking to modify E4 so it acts more like E2 which is protective. We're pretty far away from seeing the results, but those studies have started. They're in phase one, phase two, maybe just phase one, but they're starting, and we should know in the next five years whether or not gene therapy is a way to de risk people who have a genetic component. I mean, I don't know if we're going to know in five years. I just know some of the studies that are going on, if they succeed, then we should know in about five years. But there's more probably coming in the pipeline.

Virginia:

Well, it's personal. I have a friend who didn't exactly know what she was asking with her results and found out she has two copies of APOE4, and severely regretted it. She wasn't informed first, which is a bad idea, but if you're informed and educated about what these things could mean, I think it's better than just going in blindly.

Deborah:

100% I completely agree. I've noted, like the younger generation, like millennial or below, they seem more open to genetic testing. And I think it's just it's becoming more common yeah.

Virginia:

That's interesting. Okay, so biomarkers and the blood test, you have a lot on that too, don't you?

Deborah:

Yes, we have a lot of information on that, because that is a new technology that is emerging. Blood tests now are used in some clinical practices. I think it will be used in many more coming very soon. Fujirebio was the first FDA approved blood test for Alzheimer's. So they're on a track where we're probably not that far away. I mean, I went to the Alzheimer's Association Conference in Toronto just last month. And honestly, the blood tests now their accuracy, some of the biomarkers are almost just as accurate as the scans, and so some of them have been approved for diagnostic purposes. The majority of them, because this is such a nascent field, are used a lot in clinical trials, but they're also compared to scans, right? And so they're used in clinical practices as kind of like an early detector. But then the next kind of port of call would be, go get a PET scan or go get a spinal tap to see if you have evidence of pathology. The blood tests are getting so good that I do believe that they're going to replace scanning eventually.

Steve:

That would be great. It's time consuming, scary, and if you have to pay for it yourself, expensive.

Virginia:

Absolutely.

Steve:

I had a question for you. You're covering so many wonderful areas, and we want to make sure we get this last one in. But what do you think is the best way for somebody who finds your site to participate?

Deborah:

You mean, where do they go? Where do they start? What do they do?

Steve:

Yeah, so we promote you, and people go, "Ah, I host a support group, and I'll mention it." And you know, we obviously will post this story. So what's the best way to get the most out of Being Patient, which is a great phrase, by the way. Because it relates to the whole concept of being a caregiver, Being Patient.

Deborah:

Yeah. So I would recommend signing up for our Friday newsletter, and you can do that on beingpatient.com. Every Friday we send out a newsletter; in it are kind of like the week's top stories. I write a message every single newsletter. I write- it's called My Thought of the Week- and it's on whatever I feel like writing on. I think about it on my morning run, and I think what was interesting this week, and that's usually the focal point.

Virginia:

I kind of wondered how you came up with what you were writing.

Deborah:

I mean all my ideas are on my runs, and then in that newsletter, we also are posting all the live talks, right? So coming up, we'll have a live talks. We'll probably have the next three or four live talks listed in our newsletter. And then we always post a learning guide, so it's kind of like a neat and tidy way to stay abreast of all of the information that we're putting out.

Virginia:

Absolutely.

Steve:

Yeah, I found myself, I thought the bar was very good too. It's easy to maneuver through. So depending upon your topic, the area is so wide, there's Diagnosis, okay, I'm in that phase or so. I think that was great. So let's go back to your last question, Virginia.

Virginia:

The last question is, every day we hear things about AI. What goes through your mind in relation to how AI can help your purpose and the purpose of researching the cause and hopeful demise of Alzheimer's.

Deborah:

I think we were probably one of the first media companies to come out with an AI policy. Because to me, it was really important that people know that our content is written by humans. We're not going to be part of the scrape the internet and put something out there, just for the sake of getting it out there. The AI still makes a lot of mistakes in terms of accuracies and hallucinations and for healthcare, I don't think that's fair. You need human vetted content in healthcare, especially when you're talking about people's health and treatments and things like that. But what AI has done for us is it sped us up a bit in different ways, editorially. We use it to turn an article into a video script based on our content. We use it to make infographic based on our content. So the reporter will write their script, and we can use the AI to say, give me an outline for an infographic. We'll take that outline and a human editor will edit the outline that the AI is created, and then pass it on to our graphics designer. So it kind of speeds us up in that way. I mean, we are a great resource for patient-caregiver insights. Of the last survey we issued was whether people want to take a genetic test for Alzheimer's or not, and so what we wanted to find out is who's willing to take a test, if you're not, why? If you've taken one, what has been your experience? So I thought this was gonna be kind of like a niche survey. We ended up getting 2105 people to answer it in three days, and people wrote us copious amounts; they wanted to share their experience. So we have paragraphs and paragraphs of comments on the surveys as well as the survey answers. So we used artificial intelligence to analyze the open ended comments, which it does a fabulous job of. We can categorize these people are E4 homozygotes. They answered this way, as compared to people who have a diagnosis with MCI. So we could drill down very deeply. So we're using AI that way. But most excitingly, I was like, guys, we have all this great content. A lot of it is evergreen, meaning it doesn't change, right? Like how to get a diagnosis will change somewhat, but we're always covering that with our editorial and our journalism. So we're building what I'm calling a Care Bot, and the Care Bot is going to enable people to ask questions get an answer, either in voice or in a short summary. But what's beautiful about it is it links to all of the articles it derived that answer to, so people can go even deeper into our content by using this Care Bot and finding that and that's coming. We're almost done building 2.0 and so that's going to go out if you read my newsletter. We're going to ask people to beta test it to really understand what's going on and how they're using it and all of that. So that's a great way for us to use AI to enhance our content, get it to people in a different format, answer their questions quickly. I mean, it's performing beautifully, even when we ask it questions like my husband is pacing back and forth. I'm going crazy. I don't know how to make it stop. We have articles about that. We have talks with people like Teepa Snow to answer those questions. So it just does a really good job of condensing the expert advice that we've already gotten and published on Being Patient and presenting it in a very user friendly format.

Virginia:

Oh, that sounds wonderful.

Deborah:

Yeah, I've been busy.

Virginia:

Yes, you have. I know we have to wrap up here pretty soon, but I want to know how's your mom?

Deborah:

Thank you so much for asking, and I always answer it this way. I think you define what you're grateful for. Your definition of what you're grateful for changes as you move through this disease. When I go over, I have lunch or dinner with my mom on a regular basis. She doesn't live with me, but she lives at home and has full time care now with my dad. S he's losing words. Basically, she's having a very hard time expressing herself, but then she'll surprise us. Sometimes, she comes out with full sentences. So we'll be at the dinner table, and someone will make a joke, and she appropriately laughs with all of us like at the same time. So we're like, wait what she's laughing like at the same time. You know, moments like those you're really grateful for, because it makes you feel like she is still there. And my mom has had this disease now for probably about, Oh God, it's been over 10 years now. It's been a long time all of us know who lived through this journey. It's never an easy journey, but I am grateful that she's here, and I'm grateful for those moments.

Virginia:

Yeah, wonderful. Well, Steve, do you have anything else you would like to ask Deborah before we wrap

Steve:

As usual, fabulous. What a calling that you have, young lady to follow and devote yourself to. That's sort of what we're both doing on a smaller scale, but I think it's just fabulous. And what a great place. One of the best things about businesses is taking the skills that you have and now turning it into something even more valid or even more valuable to you and to all of us. So, way to go.

Virginia:

Way to go.

Deborah:

Thank you so much. And may I say, thank you so much for just the opportunity to tell more people about what we're doing that's really important to grow this and really just get people the right information. So thank you so much for this opportunity and sharing your platform.

Virginia:

Oh, you are most welcome, and we will put links in our show notes to anything you want us to link. People out there beingpatient.com will get you to the best place, and we're just very grateful you are here. And to our listeners, please subscribe to our podcast, Spotlight On Care and join us again soon for another episode. Thank you.

Deborah:

Thank you.

Steve:

Spotlight on Care is produced by the University of California, Irvine - Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment, should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.