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Join us for an insightful discussion with Carol Steinberg, a journalist and patient advocate, as we explore the critical issues surrounding Alzheimer’s disease and cognitive screening. Carol shares her personal experiences with the Medicare Annual Wellness Visit, highlighting the common mistakes in cognitive assessments and their impact on diagnosis. We’ll delve into the importance of early and accurate screening, the challenges patients face, and the racial disparities in Alzheimer’s diagnosis and treatment. Discover the role of lifestyle interventions, the need for better training for health care providers, and how we can educate the public to reduce stigma and fear.

Carol Steinberg is a journalist and patient advocate.

She discusses the KevinMD article, “I had a (incorrect) memory screening. Have you even had one?”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Carol Steinberg. She’s a journalist and patient advocate. Today’s KevinMD article is “I had an incorrect memory screening. Have you even had one?” Carol, welcome to the show.

Carol Steinberg: Thanks so much for having me.

Kevin Pho: So let’s start by briefly sharing your story and journey.

Carol Steinberg: So I started off as a journalist. I was a freelance journalist for many years, regular contributor to the New York Times, Success magazine, Physicians Financial News actually, and Long Island Jewish World.

And then I did a midlife career switch and I joined the Long Island Alzheimer’s Foundation, and then helped build a national Alzheimer’s foundation from the ground up with the CEO. So I was an executive there for about 15 years. And that was prompted by my family’s experience with Alzheimer’s disease. My dad had the disease. Wasn’t really looking for a career change, but as things happen, it sort of fell into my lap. I think it was a bit of serendipity and meant to be.

I’m now semi-retired, freelance editor, writer, and have sort of come full circle. I do write a newsletter for a new organization called Voices of Alzheimer’s. So happy to be back in the Alzheimer’s world, as well as pursuing my own freelance journalism and editing.

Kevin Pho: So from your experience as a patient advocate and working in the Alzheimer’s nonprofit world, tell me some of the challenges that you’re facing from that perspective, from the Alzheimer’s perspective.

Carol Steinberg: I think the general one is really raising awareness of Alzheimer’s disease. People, especially people my age, aren’t aware of the Medicare annual wellness visit, that it includes cognitive screening. So they go to their physician, maybe their weight, their height, their blood pressure, et cetera, but rarely are questions asked about their mental health, or rarely are there discussions about things you can do to help prevent Alzheimer’s disease or help delay progression of the disease. There’s no cure right now, but there are modifiable risk factors, and that’s something that’s really not talked about.

In my own experience, when I went for my Medicare annual wellness visit, I’m lucky that I have a very astute primary care physician who has included cognitive screening in the Medicare wellness visit. But it happened that when I had my wellness visit recently, it was done incorrectly. And as I said in the article, I’m one of the fortunate ones who knew it was done incorrectly, because of my years in the Alzheimer’s world.

In fact, when I was with the Alzheimer’s Foundation of America, we initiated National Memory Screening Day. I got millions of dollars in grants to promote that. So I was well aware, and I kept thinking, what about all the people who aren’t aware that they’re entitled to this memory screening? And they’re really losing out.

Kevin Pho: All right. So like you mentioned, you talk more about that in your KevinMD article, “I had an incorrect memory screening. Have you even had one?” I’m an internal medicine primary care physician myself, so I’m certainly familiar with the Medicare annual well visit exams, as a lot of my listeners are. So tell me about your experience with your well visit exam. What kind of cognitive screening did you experience, and how did you know that it was incorrect?

Carol Steinberg: So it was the typical cognitive screening, in effect the mini-Cog or mini-mental. Just a series of questions and tasks, asking me to draw a clock, asking me three words and then to repeat them.

How I found it was incorrect was, the clinician, it wasn’t the PCP, it was her assistant, and she told me the three words and asked me to repeat them immediately, but never came full circle back to ask me again what were the three words, which is incorrect.

And I mentioned that to my PCP. She was mortified. She said, obviously we need more training. The ironic part was that someone was shadowing the assistant that day, so they didn’t do it correctly either.

My son-in-law happens to be a physician as well, he’s finishing his fellowship in surgery, and I asked him what his training was in Alzheimer’s disease when he was in medical school, and he basically read back to me the mini-Cog. In fact, every now and then he’ll ask me to count backward from 100 by 7s, which is a typical part of the exam. Thankfully I can still do it.

But I asked my peers, some of whom are my age, if when they’ve had a Medicare annual wellness visit, if they’ve ever had a cognitive screen, and none of them did. And I was actually very surprised by that. So clearly clinicians, either because of lack of time or lack of training, or their assistants in many cases, aren’t following through, and people who are entitled to a Medicare annual wellness visit aren’t aware that they should be asking for it.

Kevin Pho: So your experience sounds very similar to mine. We ask patients to draw a clock and remember three words, and then circle back and ask them a period later. So just to be clear, so rather than asking the recall right away, what’s a typical time frame before we have to circle back to that question again?

Carol Steinberg: I honestly am not sure of the answer, but I do know that it’s supposed to be sometime so that your thoughts are elsewhere. So it’s not immediate.

Kevin Pho: Right, correct. But when you talk to your peers or your colleagues in the Alzheimer’s community, not even that was done in a lot of cases. Is that correct?

Carol Steinberg: It wasn’t done. And in fact, as I mentioned in the article, I had interviewed a nurse practitioner who had been giving these exams to her clients, and when she was diagnosed with Alzheimer’s disease herself, when she went for the screening, the test was done incorrectly for her as well.

So there are issues out there. We know that physicians need more training in cognitive screening, in talking about dementia. Often doctors don’t want to raise the issue, patients themselves don’t want to talk about it because it’s scary, but the sooner you talk about it, the more you can do about it.

Kevin Pho: So let’s talk about that next step. So let’s say something does come up in one of those screenings for the annual well visit exams. Talk about why it’s so important to screen early for potential Alzheimer’s, and talk about some of the things that we can do to perhaps slow onset.

Carol Steinberg: One of the reasons it’s important to know if you have Alzheimer’s disease early on is that, one, you can plan for future, advanced care planning, et cetera. Two, you might want to make some changes in your life to really live life to the fullest now. Perhaps you want to look at your work situation, or do more traveling now, things like that.

In addition, there are now new drug treatments like Leqembi that may help slow the progression of the disease if you’re in the early stages, mild cognitive impairment or early stage Alzheimer’s disease. Years ago there really was nothing that could be done, but for eligible candidates it may be worth trying, to help see if you can slow the progression of the disease.

It’s also important to know because there are things you can do to modify your lifestyle to help improve your brain health. Things like exercise, following a Mediterranean diet, refraining from alcohol, brain stimulation games like Wordle, crossword puzzles, things like that. And those are all things you can do whether or not you’re diagnosed with Alzheimer’s disease. It’s really advisable now to start early on in life and do those things that can help with lifestyle risks.

Kevin Pho: And just to be clear, for those patients who may be listening to you and may not know the difference between a regular physical and a Medicare well visit exam, what are they entitled to? What should the clinician do in order to screen for Alzheimer’s during a Medicare well visit exam?

Carol Steinberg: So a Medicare annual wellness visit is supposed to include a cognitive screening. It’s just a short series of tasks and questions that helps a physician see if next steps should be taken. It’s not a diagnosis by any means. It’s really saying, Carol, I think you should go see a neurologist. Now let’s see if something else is going on, let’s see if you need an MRI, if you need a PET scan, or is it a reversible condition that perhaps needs other types of treatment?

Kevin Pho: And in case that doesn’t happen, what are you advocating patients to do if that aspect of the exam is overlooked?

Carol Steinberg: I really think you need to be an advocate. I mean, I have a very good relationship with my PCP, I respect her immensely, and I felt it was my duty to tell her that it was done incorrectly on me, I repeated back the three words. As I said, she was mortified about it, but I’m sure that helped her to go back and say something to her staff.

You really need to be an advocate in this day and age. I think that’s always been the case, but perhaps because physicians are more limited in time, they are so overloaded in their schedules, you need to speak up for yourself and really encourage a physician to do what you’re entitled to.

Kevin Pho: Now let’s talk about the next steps. I think one of the things that you mentioned in your article is just in general a shortage of neurologists and geriatricians on the diagnosis and treatment of Alzheimer’s, especially in underserved areas. So talk about that issue in general, and what are some ways it could be addressed?

Carol Steinberg: So it’s very well known that there’s a shortage of neurologists nationwide. The American Neurological Association called the shortage a grave threat to society. I believe there’s 20 states or so that are considered dementia neurology deserts. And I hear from my interviews with a lot of people with Alzheimer’s disease, or going to explore if they have Alzheimer’s disease, that they often have to wait one year, two years for an appointment, long wait times, have to travel as much as 150 miles to even get to see a neurologist.

So what could be done? One, we need more neurologists, so hopefully more people in medical school consider that as a career choice. Telemedicine is on the rise, so that may help alleviate some of the wait times for people with the disease, although my understanding is telemedicine is really taking off more in urban areas than rural areas, which was not the intent.

And as well, it’s more training that we need for PCPs, to help them be the first step, really, so that a lot of the testing can be done in a PCP’s office, so that alleviates some of the time that needs to be spent at a neurologist.

Kevin Pho: One of the things that you mentioned earlier was the stigma and fear that may be associated with Alzheimer’s and other forms of dementia, and they may prevent patients from maybe seeking out a diagnosis, or prevent PCPs from pursuing screening. So how can that stigma and fear of that potential unknown, how can that be alleviated?

Carol Steinberg: A lot of it, I think, is awareness raising, letting people know that yes, Alzheimer’s is devastating. I mean, it’s horrific, there is no cure. My own family experience, I saw what happened to my dad and it was terrible. I saw the burden it took out of my mother, who was a heroic caregiver. So it is frightening, and I get that, I’m frightened myself of the possibility.

But if we hear people’s stories, that might be able to reduce the stigma. When I interview people, I hear about people who are really living life to the fullest, enjoying life, doing the most they can, who are taking steps, running marathons, adjusting their diets, listening to music, participating in the creative arts, doing some things to make living in the moment perhaps a little better.

And I think the other thing we could do is really sort of take the fear out of the patient’s part and the physician’s part of talking about the disease. Physicians are reluctant to raise the issue. I believe at one point they were really reluctant because there was not much that could be done, but there are some new treatments now, there is growing evidence that there are lifestyle changes that may help slow the progression of the disease. And on patients’ part, it’s really, as I said, being an advocate and saying, where is my cognitive screen, why aren’t you doing that, I want to talk about some concerns I have.

Kevin Pho: So talk about some resources that both physicians and patients can go to, to educate themselves about Alzheimer’s and perhaps help in alleviating that stigma.

Carol Steinberg: There’s a lot of information on federal government sites. There’s information on the Centers for Medicare and Medicaid Services about what you’re entitled to. And there are many advocacy organizations in local communities, nationally. As I said, I write for Voices of Alzheimer’s, which is really trying to share the voices of people with the disease, and put more of a positive spin and perhaps alleviate some of the stigma of the disease.

Kevin Pho: You talked earlier about how people who may have an early diagnosis of Alzheimer’s or dementia, they’re living full lives and going through all the hobbies that you talked about. I know I’m putting you on the spot, but do you have one specific story or case that you could share that can really bring that concept to life?

Carol Steinberg: Well, I recently interviewed two men, both of whom have Alzheimer’s disease, younger onset Alzheimer’s disease, they’re younger than 65, which is something else a lot of people don’t know about. They think it’s a disease only affecting people in the later years, and there are people under 65 who are diagnosed as well.

And these two men were really intent on participating in the Ironman, the triathlon of biking, running, and swimming. And both of them trained for it, both of them completed it, which to me is just amazing. Let alone do it without Alzheimer’s disease, but to know that you have Alzheimer’s disease and that you could meet this kind of challenge, that perseverance is fantastic.

We know of people as well who are really starting to pick up the creative arts. Rebecca Chopp just wrote a book, Still Me, and she has taken up painting in her later years with Alzheimer’s disease, and that seems to be helping her. So there are things that could be done.

Kevin Pho: We’re talking to Carol Steinberg. She’s a journalist and patient advocate. Today’s KevinMD article is “I had an incorrect memory screening. Have you even had one?” Carol, we’ll end with some of your take-home messages that you want to leave with the KevinMD audience.

Carol Steinberg: I think there’s two. One is for clinicians, that they should be really talking about cognitive issues, whether the patient raises it or not, or at least talk about brain health even if they don’t detect any kind of cognitive impairment. Let people know, no matter what age, that they should be exercising, following a Mediterranean diet, et cetera.

The second thing, and I’m not saying this from a narcissist’s point of view at all, but I think I’ve learned over the years, is that you need to take care of yourself. Burnout is easy from working hard. I worked hard my whole life. You need to find that balance between working and living life.

And I’m going to offer a third one, for people with Alzheimer’s disease and their families: look for the moments. I remember with my dad, who had Alzheimer’s disease, and at the time I wasn’t in this world and I have a lot of regrets, because I really didn’t know how we should be dealing with his Alzheimer’s disease. My kids and I were talking to him once about family, we were talking about family history, they were filling out a book about their family roots. My father was in the background, we never thought to include him in the conversation. And we asked my mom, who were my father’s parents, where did they live, waiting for my mom, and then all of a sudden my dad chimes in. So there are those moments of lucidity, and you should look for them.

Kevin Pho: Carol, thank you so much for sharing your perspective and insight, and thanks again for coming on the show.

Carol Steinberg: Thank you so much.