Spotting Cognitive Decline Early: Questions to Ask Your Doctor

The earliest signs of cognitive decline can be subtle — a missed appointment, a forgotten conversation — but recognizing these changes early, and addressing them with a primary care team, can make a crucial difference for patients and families.

Dr. Anna Chodos, MPH, is the executive director of Dementia Care Aware, an initiative that helps primary care providers across the country improve dementia detection and care. A professor of medicine at Zuckerberg San Francisco General Hospital and the University of California, San Francisco, her clinical work focuses on outpatient geriatrics and dementia care, and her research centers on the unmet needs of older adults, especially those living with dementia.

In conversation with Being Patient’s Mark Niu, Chodos breaks down what “cognitive decline” really means, how to tell the difference between normal aging and concerning changes, and which early symptoms should prompt a closer look. She walks through what a basic cognitive assessment in primary care typically involves, offers concrete questions families can bring to appointments, and shares strategies for advocating when concerns are brushed off as “just getting older.”

Being Patient: Can you define a cognitive decline in plain language for patients and families?

Dr. Anna Chodos: Cognitive decline really is just referring to that change, that delta, from where we were, what we expected of our brain and our cognitive performance, and now, so that we’ve had some sort of decline.

In a clinical setting, we’re probably talking about hearing the person tell us about some symptoms that indicate they’re having real difficulty in areas where they weren’t before. I think that’s a really key piece: Is this a change from a previous baseline — how they were before? Sometimes we measure it, and the measurement sometimes comes when people do those tests, like a cognitive test with the doctor, or a psychologist, or something like that.

Sometimes we quantify it almost like you would a blood test. We do these tests to really understand how the brain is performing. And sometimes we might use it just after somebody has reported some symptoms. So, it’s just a general reference that you’re not the same as before.

Being Patient: What are some of the earliest changes in memory or thinking that families are likely to notice first?

Chodos: What we usually think about is how normal are their symptoms? I just want to point out that every organ for the most part, including your skin, including your kidneys, may have some change in function and reduced function, and your brain is no different. So we shouldn’t expect our brain to be the same at 80 or 90 as it is at 30 or 40. So there is some natural cognitive decline in various areas.

When we talk about abnormal cognitive decline, some of the earliest symptoms really depend on what’s going on underneath. There’s not necessarily a pattern that everybody follows. It’s sort of a short menu of different types of things that might happen.

But most often, people think about memory — people will often notice some differences. They can’t quite rely on their memory as much as they used to, let’s say to keep track of a grocery list or to remember a recent conversation with a family or friend. That is because the most common cause of significant cognitive decline that turns into dementia, the most common cause is Alzheimer’s disease. And that disease in most people presents with short-term memory problems at the very beginning.

But many brain health-type agencies, such as the Alzheimer’s Association or the Association of American Academy of Neurology, have a list of the 10 most common signs. And often it’s things like forgetting recent conversations, misplacing things, leaving stuff on the stove. Sometimes I think “early” is just the most noticeable.

People will also sometimes have a lot of behavior change and that will get lumped into depression or anxiety, but really it might be an early sign of what’s underneath it, which is a more whole brain condition or a condition that’s going to lead to more of a dementia picture.

What I would say to people maybe who are concerned or thinking about it or seeing it in family members, really the most important thing is, is this a change? Anything that’s really a change for that person in any way that they used to be in their behavior, in their memory, in their ability to speak, in their ability to move or use their body in space — some people fall and that’s one of the earliest signs. Just bringing that to the attention of a doctor because it could be something that needs more evaluation.

“People will also sometimes have a lot of behavior change and that will get lumped into depression or anxiety, but really it might be an early sign of what’s underneath it, which is a more whole brain condition or a condition that’s going to lead to more of a dementia picture.”

Being Patient: Is it hard for doctors to be able to distinguish between old age and cognitive decline?

Chodos: Yes. And I think one thing we’re dealing with, and it’s part of the reason we have our program, Dementia Care Aware, is that, and I can’t really give you a good explanation why, but a lot of medical providers, a lot of health systems don’t really have a good system set up for early detection or for just routinely checking in on people’s brain health. And then a lot of doctors actually just weren’t trained that deeply in how to recognize it.

And then we add to it that if it’s early, it’s going to be more mild. So exactly what you’re saying — is this normal or not? It’s really kind of mild. And that is totally acceptable, in some ways, because if it’s milder, it’s always going to be harder to really put your finger on it. If somebody’s having a really clear, big symptom, like they keep getting lost, I think that’s something nobody’s going to say that’s normal unless they were doing that before.  

When there’s a big symptom, that’s always a tipoff. But when it’s these milder symptoms, that’s when it’s harder for everybody, the clinicians and the family. However, it is worth starting an evaluation. And I think it’s worth bringing up, because if it is something, we now are learning more and more about how much we can do at the earlier stages. And so I think it is something we’re trying to get everybody on board — healthcare providers, the system and people in the community.

Being Patient: And what should people know if they’re worried about a loved one? What are the steps to take and be prepared going into that appointment so you can get the most out of that particular appointment?

Chodos: First, to say this is why we’re trying to do our part to educate the clinical side of the house and the system to be more proactive in this area, to give doctors, primary care, nurse practitioners and everybody who’s seeing patients the tools to feel more comfortable figuring out, is this mild something or is this really normal?

A lot of these things are context-specific, but the things that really start to come to real attention is when these symptoms are getting more frequent and they’re getting more severe. I think those are some of the hallmarks of something really going on.

[An example of normal lapse would be] “I forgot that you told me that the other day, because honestly, I was distracted. I was in the middle of making my grandson’s lunch and you were trying to talk to me about something else. So I just totally missed the information.” As opposed to, “You were looking at me, we were having a great conversation and somehow you don’t remember what we talked about. And then I told you again, and you still didn’t remember a couple of days later.” That’s obviously a more severe symptom. And it’s one that’s starting to happen more often. So, those are the hallmarks when I’m asking people what symptoms they’re having. That’s how I’m starting to parse not normal from normal. 

Occasionally, it’s happening in the context that makes sense. Like, “I was really depressed. I had just lost my husband and for six months I didn’t even know what was going on.” As opposed to, “No, I’ve been doing great. My mood is great, but I can’t keep track of my appointments anymore. Apparently, I’m forgetting my medicines. I’m forgetting to take them. I didn’t even notice, my daughter pointed it out to me.” Scenarios in the sense that one of them is really indicating a more severe pattern and a pattern that’s kind of getting worse. That’s where the not normal features come in.

Again, sometimes we do have to manage up around the doctors and the health care system and say, “I understand this is really mild. We are concerned. We know her really well. What we would really like to ask for is more of an evaluation, if that’s okay, maybe some labs, maybe some brain imaging, because we take this really seriously.” And just giving the clinician an extra motivation to pursue a workup.

“[T]he things that really start to come to real attention is when these symptoms are getting more frequent and they’re getting more severe. I think those are some of the hallmarks of something really going on.”

Being Patient: Can you walk us through what a basic cognitive assessment in primary care usually looks like?

Chodos: Yes. With this condition, cognitive decline is a bucket. Sometimes what I think we think we’re talking about is dementia, and dementia is a condition where you have cognitive decline that’s so significant it’s actually causing day-to-day functional problems. So these are the elements of the diagnosis or the workup: trying to establish what’s going on with the cognitive symptoms — memory, language, behavior, ability to multitask, things like that — and what’s going on with function.

So those really should be, and often are, the two pieces that are getting assessed. And function means, how are you able to get through, honestly, really basic things like shopping, cooking, taking care of bills, managing your medications, all the way to getting dressed, taking a bath on your own or a shower, things like that. So those are the kind of questions we ask. 

Like, “How are you getting these things done? How in your family are you guys managing the shopping and the cooking? Okay, so five years ago, she was doing most of the meal preparation and now you guys have slowly taken over.” That would be a significant functional decline. I’m always trying to match cognitive decline with functional decline. 

And dementia is also still a clinical diagnosis, kind of like depression. We don’t have a blood test for depression. We don’t really have a blood test for dementia. It’s a clinical description of someone who has a cognitive decline and a functional decline. And we think that those things go together.

It’s a lot of history. Usually, it’s some brain imaging just to ensure that nothing else is going on. Usually the brain imaging is normal, or maybe it might show some shrinkage or something like that. It’s nothing super fancy. It’s really just that you’re looking to make sure there isn’t something that you miss like a tumor or a big stroke that you would want to treat that person differently.

And then some blood work, and sometimes people also do this cognitive testing if they have access to that. There’s a lot of them that we can do in clinic. And then there’s some that we can order from specialists like neuropsychologists. That’s kind of like getting a study of your heart with an ultrasound or something. It’s looking at the function of the brain — how does the brain perform when you test it? 

They split it up into all different types of brain functions. What they do is they compare that to standards for somebody without dementia. For someone who was 85, raised in the U.S. and had a high school education, this is roughly where we’d expect them to be. And if they’re way off, then the person might interpret that as they’re abnormal in this area. So that can help us a little bit.

Then we put it all together. It is a clinical diagnosis. And then we try to tell people why we think it’s happening. So we’ve now described that this is happening. What’s underneath that? Is it small strokes we might call or big strokes? We might call that vascular dementia. Is it looking more like Alzheimer’s disease? We’d call that Alzheimer’s dementia or Alzheimer’s disease leading to dementia. 

Some people have frontal temporal dementia or Lewy body dementia. So that should be some of our work to put that together. And sometimes in primary care, that’s harder because that gets into specialty territory, but it can also be part of the conversation you’re having with a patient if we have information that helps with that. 

Sometimes all we can say is, “You have dementia and really at the end of the day, we’re not going to be sure exactly what’s causing it, but of course, here’s what we’re going to do about it.”

Being Patient: What should patients and caregivers do if they raise concerns and feel that their worries are sort of being brushed off as just “normal aging”? And how often do you see that?

Anna Chodos: I see it a lot. I actually talked to one of my really close friends yesterday about this. His father, who’s a physician, brought it to his mom’s doctor and the doctor said, “I think she’s fine.” They really didn’t do much of an evaluation and said, “I think she’s fine.” And obviously we can’t 100 percent guard against something like that. We can’t make the physician dive in or whatever.

There’s a lot of reasons they don’t do it. Obviously everything I described kind of takes a lot of time and sometimes they feel they just don’t have time. So this is like managing up skills — as frustrating, I’m sure, on the patient and caregiver and family side, it can be to be like, why do I have to be somehow leading you to water here?

But saying things like, “I understand you think it’s normal. We know her really well. We really think something’s going on. It would really help us if you were able to do some evaluation.”

Sometimes you can be pushy if that’s your style, and I fully recommend that if you can manage it. I think also just appealing to the best interests of their patient, which is who they’re looking out for, and just saying, “We want her to do well. She’s not going to do well if we don’t know what’s going on and we can’t help her. And we really think something’s going on,” and just making it a point.

Being Patient: How often should older adults be screened for cognitive changes and what age do you recommend starting these conversations?

Chodos: That magical number of 65 is out there because of Medicare, of course. So really a lot of the approaches start there and just say at 65, Medicare has this annual wellness visit, which not everybody gets. It’s not perfect coverage across the country. Some clinics will offer it, some won’t.

But basically we also see the risk of dementia and the numbers just really start to go up at that point. About one in nine, one in 10 in that age range will have it – everybody 65 and over. And then as you concentrate in the over 80 range, it’s more like one in three, one in two. So definitely everybody in that age range should be getting asked about symptoms and getting screened every year. Again, you want to try to catch it earlier. So mostly we recommend 65 and older.