Ep 3: When Should Someone Be Concerned about Alzheimer's Disease?

[00:00:00] Shawn Martin: I just wish I had known more about the disease itself. Then maybe, just maybe I would have a little more time with her.

[00:00:08] Dan Kendall: Every 67 seconds, someone in the United States develops Alzheimer's. That's 500,000 new cases in the U.S. every year and 10 million worldwide. Surprisingly, 1 in 5 Alzheimer's cases may be misdiagnosed for another condition, and many more go undiagnosed until much later stages of the disease.

So if problems with thinking or memory are starting to worry you, when is the right time to ask your doctor, do I need to be concerned about Alzheimer's disease? 

[00:00:35] Russ Paulsen: The earlier you catch it, the better off you are. Catching it early allows you to make sure that it really is Alzheimer's.

[00:00:42] Dan Kendall: That early diagnosis gives you more time to learn about your options for treatment, make lifestyle changes, and plan for the future.

When should you start thinking about Alzheimer's disease? The answer might surprise you. 

In this episode, we'll share new information about the earlier stages of this disease and why early detection could open up life-changing options. 

I'm Dan Kendall, and this is the Rethinking Alzheimer's Disease Podcast. The Rethinking Alzheimer's Disease Podcast was created by Mission Based Media with support from Eisai. This series is for educational purposes only, and is not a substitute for formal medical advice, diagnosis, or treatment. The opinions expressed are the individual views of the speakers themselves and do not necessarily represent those of any organizations. If you have questions about a medical condition, talk to your qualified healthcare provider. For our list of resources about Alzheimer's disease, please visit healthunmuted.com/resources. All guests participated voluntarily and did not receive any form of compensation for their involvement.

[00:01:47] Bob Finch: So I've been seeing a neurologist and I've been paying a lot of attention to what was going on in my head.

[00:01:52] Dan Kendall: That's Bob Finch. His friends just call him Finch. Since he was diagnosed with early stage Alzheimer's just over a year ago, he's fully embraced the nickname with friends and strangers alike, permanently. To Finch, this new chapter in his life felt easier to take on with a new name. 

[00:02:08] Bob Finch: I would find myself at the end of the day going in and just collapsing on the bed for two to three hours. And I'm not a napper, but I absolutely couldn't function unless I was doing that.

[00:02:19] Dan Kendall: Finch asked his neurologist about the lethargy.

[00:02:22] Bob Finch: And she said, well, let's just keep paying attention to it.

And, uh, I've lost it again. Dang it!

This is my only visible problem and you've drawn it out. It means that I put my brain in that work-think mode and I get these cross-thoughts and I lose my place. If that makes any sense. It just does, it's my immediate memory. Especially when I get under stress and when I'm tired, it just breaks down. I can't get things from hearing, seeing, smelling, tasting, touching, through that immediate memory stage to short term memory. And it causes problems when you're having to keep track of multiple things at the same time.

[00:03:10] Dan Kendall: For Finch and other people with early stage Alzheimer's, the symptoms are fairly mild.  A person might continue to manage daily tasks like driving, working, and socializing. Yet, they could experience occasional memory issues such as forgetting common words or where they put things. While these symptoms may not be very obvious to others, close friends and family might notice them.

By day, Finch was a contractor in the high pressure world of hospitals and medical practices. If he couldn't take proper notes or his memory wasn't sharp, it could result in his clients receiving large fines, and it could have cost him his job. He began to notice how difficult it was becoming to retain information in his head.

Was this just a symptom of getting older, or was it something else? To learn more, I asked Dr. Joel Ebuh, the CEO and President of Gadolin Research. 

[00:04:00] Joel Ebuh: Studies have shown that forgetfulness is actually normal. It's part of our brain's ability to sort information and prioritize information. 

[00:04:08] Dan Kendall: So, if occasionally forgetting something is a normal part of the brain's process of prioritizing information, when should someone be concerned?

[00:04:16] Joel Ebuh: If they have a family history, it's probably time. But from a patient perspective, the trigger, quite honestly, should be, if there's any concern with your memory, just talk to your PCP and they could do a quick memory screen and see if there's any true concern that is not congruent with age or medical condition.

[00:04:36] Dan Kendall: Your PCP, or primary care provider, can assess your cognitive abilities with simple tests that can take 10 minutes or less. Dr. Sharon Cohen, a behavioral neurologist and the medical director of the Toronto Memory Program, explains. 

[00:04:50] Dr. Sharon Cohen: Different health care practitioners will do different types of cognitive tests, but two common screening tests are the Mini Mental State Examination and the Montreal Cognitive Assessment. 

The Mini Mental State Examination is a questionnaire, a paper and pencil test, with some drawing, with some questions on geographic orientation, and date and time, remembering three words. And, it gives us a score, that is helpful, but if we're thinking mild cognitive impairment, a more sensitive test, something called the Montreal Cognitive Assessment, is a test that is often used, because it is able to distinguish mild cognitive impairment from normal memory and thinking more easily than the Mini Mental State Examination.  

Every test is going to have its strengths and weaknesses, and it's important to choose the right test for the person in front of you. And you might augment this. If you know, if somebody's saying word-finding difficulties are my main problem, not memory, then you might want to do a picture naming test.

There's something called the Boston Naming Test where the short version has 15 pictures. We ask the person to name what's on the pictures and we get a score. Another common test is clock drawing. Having the person draw a clock, put the numbers around the clock face, and then set the hands at a prescribed time that the tester will usually ask the person to render.

[00:06:24] Dan Kendall: These tests can help any changes get noticed quickly. Sometimes, you might raise an issue with your doctor, and they may not fully understand just how concerned you really are.

[00:06:34] Leslie Fontenot: They go in and they're just not really understood. They're not taken seriously. That is pervasive in the medical industry right now.

[00:06:45] Dan Kendall: That's Leslie Fontenot, the VP Managing Director for Black Health Matters. It's important to advocate for yourself. However, there are some people, even healthcare professionals who will chalk up concerns about changes to memory or thinking as simply part of the normal course of aging. If that happens to you or someone you care about, Dr. Cohen suggests asking for a referral.

[00:07:06] Dr. Sharon Cohen: It's very helpful for a patient who's concerned about their memory and is encountering a physician who doesn't seem to take the concerns as seriously as we'd like, to ask for a referral to a memory clinic or a memory specialist. I don't think there should be any question that one deserves a thorough investigation. If I feel my memory’s failing, even if my doctor is not finding anything, it worries me, and I want to know that we've looked into this thoroughly. So I would say, “okay, that's great if you're not too worried, but, I'm concerned and could I see a memory specialist?”

[00:07:48] Dan Kendall: You're in the driver's seat of your own health. If you're not comfortable elevating your concerns, ask a friend or a loved one to go with you to your next appointment.

[00:07:57] Kelly O'Brien: We shouldn't have to do this, but it is an opportunity to educate our doctors. So just because their first reaction is, “You're fine,” you can say, “Well, actually, I read something yesterday,” or “I've heard that there's a connection between X, Y, and Z.” And, you know, I think most healthcare professionals get into the business because they actually want to help people, and so they're going to go back and they're going to look it up. They're going to learn about it. You may help make them better doctors. 

[00:08:21] Dan Kendall: Finch knew something was going on. Conversations with his neurologist kept him informed, but he hadn't experienced a true red flag. Then came the conference call that changed everything.

His conference calls at work had quite a few people on them. Some he recognized and others were new, which caused issues with his comprehension. 

[00:08:40] Bob Finch: I was pretty good with the voices I was used to, but then the new voices would come in and especially at the end of the day, it seemed almost like Charlie Brown's teacher was talking.

It just made no sense whatsoever.

[00:08:53] Dan Kendall: After the call, Finch's cell phone rang. It was one of his co-workers from the conference call. He wanted to check in. He said: 

[00:09:01] Bob Finch: You disappeared in the middle of a sentence for 10 to 15 seconds.

[00:09:06] Dan Kendall: Finch asked if this was the first time he'd done that. The answer? No. The red flag had arrived.

Finch had experienced a few of the symptoms the World Health Organization lists as potential signs of Alzheimer's. Some of those include forgetting things or recent events, problems with following conversations or trouble finding words, challenges with spatial awareness or recognizing where you are, and difficulties performing familiar tasks.

What if the signs aren't so obvious? Dr. Yaakov Stern offers a different perspective on when you should be concerned about Alzheimer's. His answer? Each case is different. Some people may display subtle changes, but actually be badly affected by Alzheimer's. 

[00:09:50] Yaakov Stern: You could have someone come in with their spouse and their spouse will say, “It's really subtle, but I'm really thinking that he's not doing quite as well as he should be.” And then on testing, this person really is very impaired.

[00:10:05] Dan Kendall: There may be some people who may seem to be having symptoms of Alzheimer’s, but it could be something else entirely.

[00:10:12] Yaakov Stern: And on the other side, you'll have people come in that are very concerned. They made mistakes at work. Something happened to disturb them. They made some kind of mistake with their bill. They're concerned, but upon further evaluation, it's not Alzheimer's disease, it could be something else. Maybe they're flustered. Maybe they're going through a tough time. Maybe they're a little depressed. There's a lot of other reasons why people could make mistakes.

[00:10:38] Dan Kendall: While every person is unique, the recommendation is the same – consult your healthcare provider with questions if you have concerns about your memory or ability to think. Ask to be tested.

Along with changes in the way you think – what doctors may call “cognitive changes” – Alzheimer’s symptoms also include changes in mood and behavior. According to the World Health Organization, some of those changes include personality changes, inappropriate behavior, and being less interested in other people’s emotions.

[00:11:06] Russ Paulsen: My name is Russ Paulsen and I am the Chief Operating Officer at UsAgainstAlzheimer's. We're a patient advocacy organization that also does research into patient preferences: what matters most to patients living with, or worried about living with, Alzheimer's disease.

[00:11:21] Dan Kendall: Like many of us, Russ has Alzheimer’s in his family. When the signs became obvious for his loved ones, he and his family went through the initial question that so many people do.

[00:11:31] Russ Paulsen: We wondered, is this the time? Is it worth the argument to get someone to go to the doctor?

[00:11:37] Dan Kendall: The team at UsAgainstAlzheimer’s developed an online tool that can help answer this question. 

[00:11:42] Russ Paulsen: We have a website called mybrainguide.org that allows people to sort of assess, on behalf of a loved one, is this even looking like dementia to start with, because sometimes the first hurdle that you have with someone who is showing signs of decline is getting them to go to the doctor in the first place. And so you go to mybrainguide.org take a little questionnaire and it will help you understand. It's not a diagnosis, not even close, but it'll help you understand, is this worth the fight?

[00:12:12] Dan Kendall: It's easy, and free to use. In the end, if the symptoms are clear, Russ and many others would agree, the fight is worth it.

[00:12:22] Russ Paulsen: The earlier you catch it, the better off you are. You might be a good candidate for one of these new treatments, but there are also lifestyle things and other possibilities of things like controlling your blood pressure through blood pressure medication. Also, catching it early allows you to make sure that it really is Alzheimer's and not a B12 deficiency or something that's really easily fixed.

[00:12:47] Dan Kendall: To learn more about My Brain Guide, visit mybrainguide.org. We have links to this and many other helpful resources at healthunmuted.com/resources.

On the next episode of the Rethinking Alzheimer's Disease Podcast: How and when can Alzheimer's be diagnosed? 

[00:13:06] Russ Paulsen: Earlier detection, earlier diagnosis, is so important for people. These new tools that exist to help people identify the symptoms and the new blood biomarkers that soon will be helping people to differentiate Alzheimer's, are going to be a game changer for the field.

[00:13:24] Dan Kendall: This is the Rethinking Alzheimer's Disease Podcast, hosted by me, Dan Kendall. This show is part of the Health UNMUTED audio library by Mission Based Media and was created with support from Eisai. To listen and learn more, visit healthunmuted.com/resources and follow our show on your favorite podcast player.