Amanda Wilde (Host): Alzheimer's and dementia are not a normal part of aging, but chances of getting both increases with age. We'll talk about symptoms, effects, and ways to address brain disorders related to Alzheimer's and dementia with neuropsychologist, Dr. Karen Sullivan. Dr. Sullivan is the creator of I Care for Your Brain Program and Reid Healthcare Transformation Fellow through the Foundation of FirstHealth.

Welcome to FirstHealth and Wellness Podcast, connecting you to the people and medical services that make your life healthier. I'm Amanda Wilde. And Dr. Sullivan, it is a pleasure to meet you.

Dr. Karen Sullivan: You too, Amanda. Thanks so much for having me.

Host: Now, your expertise is Neuropsychology. What is that?

Dr. Karen Sullivan: Neuropsychology is the study of brain and behavior. Mostly, we're concerned about the human beings who experience brain health challenges and how they adjust to them, how they show those symptoms, how we can get them support, and the very best treatment available.

Host: And while we're clearing up definitions here, what is the difference between dementia and Alzheimer's? They're often used interchangeably.

Dr. Karen Sullivan: They are, yeah. That's probably the most popular question that I get as a neuropsychologist. So, a great way to think about it is that dementia is an umbrella term. So, we have over 100 subtypes of dementia. Alzheimer's disease is one of those diseases that causes the clinical condition of dementia. So, you can have dementia and not have Alzheimer's. But if you have Alzheimer's, you have dementia. Hopefully, that makes sense.

Host: And isn't it true that Alzheimer's accounts for a lot of dementia cases?

Dr. Karen Sullivan: Yeah. A lot of studies tell us it's the most prevalent subtype of dementia in the early stages. By the time someone is in the later stages and passes away from dementia, most people actually have a mixed subtype where you have Alzheimer's disease plus maybe another subtype. So, that's why it's very important in the beginning stages to get an accurate diagnosis, because we do treat the different subtypes of dementia differently, and we have different medications depending on what subtype it is.

So in the beginning, defining what subtype it is and what stage it's at is very, very important. In the end, it winds up not being so important because we have many more treatment options for the early stages of dementia.

Host: So, you've mentioned there are different types of dementia, and how might different people be impacted?

Dr. Karen Sullivan: So, it can vary by age of onset. It can vary by what area of cognition is impacted. It can sometimes preferentially affect personality, and behavior. All dementias have three components. So, there's always a cognitive factor, there's always a mood and behavior set of symptoms, and they have to be severe enough to affect everyday function. So, the three things we typically think of with the dementias are managing your finances. It turns out that's actually the most sensitive area. Then, we would have managing medications, remembering how to get to your doctor's appointments. And the third one is driving. So, that's a good thing for people to know, because if those three things are going genuinely well, and the person is able to accommodate for any physical-related age changes, like difficulty with seeing, you know, if they can wear stronger glasses, difficulty with hearing by wearing hearing aids. If cognitively, they can remember where they're going to and from and how to get to new places, figure that out, then we can generally be rest assured that it's not aging to the severity of being dementia.

Host: Yeah, because as we age, we become more forgetful, it seems to me, in general. And I think many of us wonder, "Well, where is this leading?" or "Am I at the beginning stage of something like Alzheimer's or dementia?" What are some of the first things someone may notice when a family member has cognitive issues?

Dr. Karen Sullivan: So across all the subtypes of dementia, the key word would be change. So if someone's always struggled to be organized, for example, and they happen to be 82 years old and they can't find their keys often, or they lose their phone, if that's not that big of a change for that person, we don't want to paternalize them in any way and kind of assume, "Oh, here we go. It's an age-related change." What we want to think about is what is significantly different for that person. And that will vary according to the subtype. So, short-term memory loss is the cardinal symptom that we see in Alzheimer's type dementia. But that wouldn't be something you would see in, say, a language-based subtype of dementia like primary progressive aphasia.

So, the subtypes early on really do have their own unique signatures. Like I said, they all have three things in common, though, that there would be a cognitive change from someone's norm. That there would be some impact somewhere on mood and behavior, and that can vary from some increased anxiety, agitation. It can also look like depression where somebody just doesn't have the interest or the initiative that they once had. Apathy can be pretty telltale in the beginning of Alzheimer's. And then, again, we always see that those symptoms are severe enough to where the person needs assistance, help, or supervision with different instrumental activities of daily living , like the finances, medications, and driving.

Host: How do you diagnose which type of dementia a person may be experiencing?

Dr. Karen Sullivan: As a neuropsychologist, that's my favorite question because what we do is the gold standard. We oftentimes have people say, "Well, I want to get a brain scan, and that's going to tell me whether or not I have a healthy brain or not." Well, with the brain structure and function don't have the close one-to-one relationship that people often think. We think there's about a 25% difference in what the brain looks like versus what the brain can do. So, for example, in MRIs of the brain, I've seen very, very good, healthy, plump-looking brains. And when we test their memory, with neuropsychological cognitive tests, paper and pencil tests, we see that their memory is quite impaired for their age. And it goes in the other direction as well, sometimes you'll see what looks to be a very diseased brain on an image, and you can test someone and their memory is completely normal for their age and education. So, paper and pencil testing really kind of the straightforward, some might say a little bit more of the old school stuff, really is the best approach, of course, combined with a very detailed clinical interview where we take the time to listen to not only the expertise of the person experiencing the brain change, but also their family and friends. These people have often known these folks for decades, and they're really our best allies to share with us what is a change. So, making the time to sit down and listen to what our patients and their what we call informants have to tell us is often where we find a lot of the answers.

Host: So, you talk to the patient and the family and these pen and paper cognitive tests are indicators. When you find someone does have Alzheimer's, let's say, since that's the most common under the dementia umbrella, once you've diagnosed that, how do you then treat it?

Dr. Karen Sullivan: So as neuropsychologists, we're psychologists with advanced training. So, we are not prescribers in the state of North Carolina. So, we work mostly with primary care physicians, neurologists, and palliative care providers to make the diagnosis so that they can medically manage the condition. So, we may be able to point them in the direction of one of the FDA-approved medications where we really apply our specialty, talking about the social, environmental changes that can happen that can support people with dementia and the psychological adjustment, because this is not just a medical condition. The brain is the organ of the self, and very often there are pretty significant psychological symptoms that go along with it, whether or not it's the cause or the effect, that's kind of our job to figure out. But often times, we wind up providing individual support, family education, guiding people to community resources, just trying to make sure that people and their families don't feel like they're in this alone because it is quite a complex set of diseases, so we tend to be the point person in the community for people with the dementias.

Host: So in terms of support and resources, can you talk about your I Care for Your Brain project that you created?

Dr. Karen Sullivan: Sure. I started that about seven years ago on social media, because it was a free way to get science-based brain health information to the public. Neuropsychologists, not only is it a long word to sound out, we're kind of few and far between. So, in North Carolina, I believe we have 26 at the present moment. In South Carolina, my understanding is there is one. So, we have many, many, many aging folks that would like to be seen and very few of us. So oftentimes, people don't have great access right now to a brain health specialist that has the time that we have to be able to put into someone's care. So, I felt a sense of responsibility to share my training and education in a way that was very cost-friendly. So, it doesn't get as cost-friendly as being free on social media.

So about once a year for the last seven years, I've been primarily on YouTube offering a free brain health lecture. So, we often talk about the dementias. We talk about stroke. We talk about depression, posttraumatic stress disorder, how to go to brain health doctor and prioritize your concerns with the little amount of time that we have, just trying to really be there to help people with their own self-advocacy because in today's medical world, that's really something that we all need to develop skills in if we're going to get the best care.

Host: What is the impact you see of your program on people in the Sandhills?

Dr. Karen Sullivan: It's been a great way to connect with my community. I've had my private practice, Pinehurst Neuropsychology, here for going on 11 years and have really loved the support that the community has provided me with. And so, it's been a great calling card for people to get to know that I am an objective, truth teller, hopefully, in the brain health space. And people oftentimes are turning to media reports that can be sponsored by corporations who are pushing a too-good-to-be true brain health product. So oftentimes, I find people find me. I review a lot of supplements, talk a lot about different diets, what actually works, what doesn't work.

So, I think it's been a great way to kind of brand myself as someone who genuinely is concerned with the community. And I've just had a tremendously positive experience since moving here 11 years ago. I can't imagine practicing anywhere else. It's such a supportive community.

Host: Well, speaking of support, do you have any advice on how caregivers can advocate for older family members who begin suffering from cognitive issues?

Dr. Karen Sullivan: Yeah, that's one of the things I go out and try to talk to folks about because we do still have a lot of stigma around cognitive disorders. So, it's oftentimes a really sensitive subject that we just aren't skilled in knowing how to bring up. So, what I advocate for is that people just start to pay closer attention to the person in question, if they are getting concerned, because you don't want to bring up concerns based on one event. You want to look for a pattern that is a change for that person.

So once you have a couple examples in mind, you want to find a quiet, calm, relaxed, familiar place to go with that person. And I would start by asking them if they are concerned about themselves, because sometimes they themselves have noticed. And a great way to bring that up is, you know, "Do you ever worry that maybe you're having more memory problems than you would expect just for your age?" And that would be the best approach. If somebody themselves says they're concerned, well, that's your best invitation to say, "Hey, maybe bring it up with your primary care doc," or "Could I go with you next time to the doctor so we could talk about it?"

If they don't seem to have the same insight and awareness that you have, that's a little harder because then we have to say something that they might find to be challenging or sometimes even insulting. So, we have to really get brave and recognize that this is part of caring for this person at this time in their life. And love and friendship isn't always about positive happy times. Sometimes, we also have to do things that are hard because we love that person. So, we might then have to say, "Well, these are a few things that I've been noticing." And because we do have treatments for the beginning stages of many brain changes, I really think we should go get a gold standard evaluation with a neuropsychologist, with a trained medical professional, so we can just answer the question. Maybe it is normal aging, but what if it's not? And I don't want to lose precious time with you. So, let's please just go take a look at this and see what comes up. I know a really good group through the FirstHealth of the Carolinas that would be able to help us, and I think we can find a good team to partner with there."

Host: That's a great way to remain respectful and non-judgmental while moving forward on these issues of health. Well, Dr. Sullivan, thank you so much for your continued work around brain health and the clear insights you've shared in this conversation today.

Dr. Karen Sullivan: Thank you so much, Amanda. Take care.

Host: To learn more about neurological services at FirstHealth, visit firsthealth.org. If you found this podcast helpful, please share it on your social channels and you can check out the full podcast library for other topics of interest to you. Thank you for listening to FirstHealth and Wellness podcast brought to you by FirstHealth of the Carolinas. We look forward to you joining us again.