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Interviewer: Age-related macular degeneration is a leading cause of vision loss in adults in the United States. The effects on the central vision caused by this disease can significantly impact your life, including the ability to do daily activities, the things you enjoy, and it could also lead to a loss of your independence. However, the good news is, if caught early, the progress of the disease can be slowed.

Dr. Monika Fleckenstein is a professor of ophthalmology and vision sciences at the Moran Eye Center. She's a retina specialist with an emphasis on this condition. Dr. Fleckenstein, let's start with what is age-related macular degeneration. What's going on?

Dr. Fleckenstein: Yeah. So age-related macular degeneration, and we usually say AMD, this is a disease in the back of your eye, and it causes that your central vision may get worse over time. As the name says, the most important risk factor is your age, where you cannot do a lot about it. But we also know other risk factors, which is, for example, smoking or unhealthy lifestyle. And we also know that there's a strong genetic component in this disease.

Interviewer: You called a . . . it impacts your central vision. Is that what you said? Explain what that means.

Dr. Fleckenstein: Yes. So if you look at a paper and try to read, you do this with your very central vision. So this is the area of sharpest vision. This is an area in your eye which we call the macula. And the very center of this macula is the fovea. This is actually the area of sharpest vision, and this is the area you need for reading, for recognizing faces. So this is the highest resolution in your eye.
How Age-related Macular Degeneration Impacts Daily Functioning

Interviewer: I want to know how age-related macular degeneration impacts people's vision in their daily functioning. Talk to me about that, from what you've seen with your patients.

Dr. Fleckenstein: We have different stages of age-related macular degeneration, early stages where you may not experience any symptoms, and then we have the later stages of the disease that you may develop a grayish area in your central vision. In certain subtypes of the disease, you may even develop a central dark area where you're not able anymore to recognize faces or read.

The symptoms patients experience is dependent on their disease stage, but usually, when I see patients with earlier stages, I actually ask them, "Do you have difficulties in dim light?" And so when you go to a restaurant and if you try to read the menu and the light is dimmed and maybe candlelight, this is actually where the patients realize first symptoms. Then also, when they come from bright light outside entering a room, and they may realize it takes them longer to adjust to these changing light conditions as before in their life or compared to the people they are surrounded by. So these are typically the first symptoms of the disease.

And so in later stages, when there is the real damage of the cell layers, the photoreceptors, patients may experience that they have difficulties to read. In very late stages, patients may even not be able anymore to recognize faces. And this is probably, you know, the end stage of the disease where they are not able anymore to read or recognize faces.
Early Detection of Age-related Macular Degeneration

Interviewer: And the importance of early detection in age-related macular degeneration, it's pretty critical, from what I understand. Can you expand on that?

Dr. Fleckenstein: Most sad situations are those where patients have the wet stage and did not receive treatment, and then you face a stage where treatment is not possible anymore or is not really effective anymore if patients have developed scar tissue. And this is why it's so important that if you realize symptoms, never hesitate to reach out to your doctor and ask to have a look.

And when I'm seeing actually my patients with earlier stages of the disease, I explain to them the symptoms of the later stages and tell them, "Please never hesitate to contact me and my team if you experience these changes." And I even tell them it's, you know, "Even if you do not have these specific changes, but if you have a weird gut feeling, please reach out," because sometimes, you know, patients just experience something is off, something is weird here. I cannot really say what it is. Never hesitate. Try to be seen by an ophthalmologist just to make sure that nothing is going on.

Interviewer: And if it's caught early, there are some things you can actually do about it. Tell me about that.

Dr. Fleckenstein: In the earlier stages of the disease, there are certain constellations or certain findings in the back of your eye where we would recommend that you take certain nutrition supplements. So it has been shown in a large clinical trial, the AREDS study, that a certain combination of supplements may delay the progression to late stages, but just if you have a certain constellation of the disease. So the study has also shown that just taking these supplements without having any sign of AMD will probably not have a positive effect. But if you have certain signs, it has been shown that the disease may be slowed down.

In general, we would always recommend, but this is more or less a general recommendation to the whole population, to have a healthy lifestyle, not to smoke. And actually Mediterranean diet has been shown, not only in age-related macular degeneration but also in cardiovascular diseases, that this can be beneficial to prevent the development of macular degeneration and also of the late stages. And Mediterranean diet, this means vegetables, fruits, olive oil, fish. So more a combination of nutrition into this direction.
When to Get Checked for Age-related Macular Degeneration

Interviewer: So since catching it early is so crucial, how often should somebody actually get their eyes checked for macular degeneration?

Dr. Fleckenstein: Yeah. So this really depends on age. So the American Society of Ophthalmology, they actually recommend to have an eye check when you become 40. Then it highly depends if your ophthalmologist finds anything, if you have any signs of a disease in the back of your eye. With ages of 65, we would recommend yearly eye exams. But of course, if you have a positive family history for age-related macular degeneration or if you have certain risk factors, I would recommend to be seen by an ophthalmologist more often and even in earlier ages.
Diagnosing Age-related Macular Degeneration

Interviewer: And in the diagnosis part, are you able to diagnose the disease? How far in advance before a person starts experiencing symptoms are you able to diagnose the disease with the equipment you have?

Dr. Fleckenstein: So we can see on a micron level changes in the back of the eye. Within the last decades, we have seen such a rapid improvement on resolution. And again, we can see tiniest changes in eyes. We indeed also see patients without any symptoms who are not aware of having any problems, and we may pick up earlier signs of the disease, and we can certainly see if macular degeneration is present or not.

Interviewer: That peace of mind is probably great for a lot of patients when you tell them, no, that's not it, that's something else.

Dr. Fleckenstein: Yes. But, you know, I tell my patients as well, as the time has changed so much and we have these dynamics right now, having the diagnosis of AMD today is something completely different than 20 years ago.

Interviewer: And why is that?

Dr. Fleckenstein: Because first of all, I believe within the next 10 years, you know, we will have more treatments available, and for the wet late stage where everyone is so scared about, we have wonderful treatment available, and this treatment really works well. And I always say I have respect for the wet late stage, but I'm not scared of it anymore because if this is treated well, patients can keep their vision for many, many years.

Announcer: Need reliable health and wellness information? Don't listen to the guy in the cube next to you. Get it from a trusted source, straight from the doctor's mouth. Here's this week's listener question on The Scope.

Interviewer: All right, today's patient question is from a gentleman named Ken. He says that his dad is starting to lose his eyesight, and they're concerned that his driving isn't as good as it needs to be.

So how do you have that conversation to take away the keys? It can be a scary thing to do. And to help answer this question we have Lisa Ord. She's a licensed clinical social worker. She also has a PhD in social work and is the Patient Support Program Director at the Moran Eye Center.

So how do you have that conversation?

Lisa: Having that conversation with one of your parents is probably one of the toughest conversations you're going to have, especially here in the West where we rely so much on driving and how much of our individual freedom is attached to be able to get in the car and go where you want when you want to. But the problem is that when someone isn't seeing as well as they need to be seeing, it gets frightening.

And it's not only frightening for them, but it's frightening for anybody else that's on the road or walking on the side of the road. So being able to have the conversation with your parents is very important. And to start with saying, "You know, dad, you've just had your eye checkup, and I see that it's not getting better. They can't correct it. Have you thought about other ways of getting to where you need to go other than driving yourself?"

Interviewer: And then you just pause and wait for that answer?

Lisa: And you pause and wait. Exactly. And it may be met with anger and just being able to be with that and say, "I know that this is a tough conversation, not something you even want to talk to me about." But the tougher conversation is the conversation after you've hit somebody because you didn't see them.

Interviewer: So this is a conversation that if you feel that somebody that you love is not seeing well, you need to have a . . . you outlaid a very direct approach. Are there other ways, if you don't think the direct approach is going to work with your particular loved one?

Lisa: I've had patients use different approaches. One patient said, excuse me, one daughter of one of my patients said that she finally said, "My children will not ride with you in the car. We either need to have someone else drive, or you're not going to be able to take them where you want to take them." So it was kind of like putting it in terms of, "I don't feel safe enough to be in the car with you. I don't feel safe enough for you to take my children in the car with you."

Interviewer: And that really kind of brought the reality to bear?

Lisa: To bear, yeah.

Interviewer: Is there somebody else you could involve, like a health care professional perhaps, because maybe they would be more willing to take it from a third party?

Lisa: I have a lot of patients that say, "But my license doesn't expire for another two years, so I don't have to worry about it." And that's not the case. You're still going to be very much liable whether your license is expired or not. If you're not safe to be driving, your eye care professional will have to fill out a medical form stating what your visual acuity is, and your visual field if you are not being able to be corrected to 20/40 or better. So that is something that they're going to have to do. Having the health provider have that conversation with your parent is sometimes easier because it does kind of put that onus on the healthcare professional.

The other thing is that if you really can't have the conversation, you really are concerned about your parents' driving or anyone's driving, you can make a report to the DMV, and they will take it upon themselves to have that person do a driving test.

Interviewer: Okay. All right. Probably not the way that most people would want to handle it. But I guess as a last resort . . .

Lisa: As a last resort. And I have had some family members who say their parents are so adamant that they're, you know, having extra keys made every time the keys are taken away from them, things like this. And so you're left with no other resort, except for to call in the people whose ultimate responsibility is to take away the license, and that is the driver's license division.

Interviewer: Ultimately, though, if somebody is faced with a vision impairment that could endanger them or others while driving, whatever you do, you would recommend something has to be done.

Lisa: Yes.

Interviewer: Don't leave it to chance.

Lisa: Don't leave it to chance. Not a good plan.

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Interviewer: Sometimes when people lose their vision, they start having hallucinations. It's a condition called Charles Bonnet Syndrome. CBS might not be well-known or documented, but it is extremely common and harmless. Lisa Ord is a licensed clinical social worker. She also has a Ph.D. in social work, and is the Patient Support Program Director at the Moran Eye Center.

So, first of all, Lisa, it's fascinating that many people might actually have this condition but don't say anything about it because they're afraid they'll be diagnosed with mental illness or dementia. So tell me more about that part of it first.

Lisa: Well, I think it's really important for people to realize that they're not going crazy. So the big difference between Charles Bonnet Syndrome and say psychosis caused from mental illness or dementia is the level of insight for number one. People realize that what they're seeing isn't really there. It can't be there. If they don't realize that when it is explained to them that this is caused because your brain hates to have a void, it's used to a lot of visual stimulation. And so it's creating this for you, then it's like, "Oh, okay." Whereas somebody with psychosis or dementia, you can't get them off of that idea that it's real.

Interviewer: And when a lot of people that have this condition are in a support group and they hear that their loss of eyesight also might be related to these hallucinations, they sigh a sigh of relief.

Lisa: Yes. Yes, because here they've kept it a secret. They haven't wanted to tell their family. They haven't wanted to tell their healthcare provider for fear that they're going to be carted off and not able to live alone anymore. A lot of our patients do live alone and quite independently.

Interviewer: Yeah. It's fascinating. So if you start losing your vision, your brain wants to see so badly that it just starts. Tell me more about how it's filling that void.

Lisa: Well, it's interesting to me. We don't know a lot about it, but what we do know is that through some fMRI studies that it's the same visual pathways that are engaged when somebody is seeing a hallucination from the Charles Bonnet Syndrome as when they're actually seeing the object. But when they're just imagining the object or visualizing the object, it doesn't engage those same pathways. So we do know that it is as if we are seeing that thing that we're seeing, and people see a variety of different kinds of things.

Interviewer: Yeah. Do you have any examples?

Lisa: Yeah. So I have a patient who saw the Grand Canyon opening up in front of her. Rather disconcerting. She knew it wasn't there, but still it was a little bit unnerving.

Interviewer: Like the ground opening up . . .

Lisa: The ground opening up.

Interviewer: . . . as if it's a Grand Canyon. Wow.

Lisa: Yes. I've had people that saw flowers or patterns. I've had a gentleman who saw a train and just passing in front of his eyes. A lot of people actually see other people, and these are not necessarily people they recognize.

Interviewer: Yeah.

Lisa: In fact, most the time they don't recognize them.

Interviewer: Can those hallucinations be dangerous?

Lisa: No. They're not dangerous at all.

Interviewer: Not even the person that thinks they see the train? I guess that's better than not seeing a train. Of course, they can't . . .

Lisa: I guess it depends what do you do with it, right?

Interviewer: Yeah. If they're losing their vision, then they're not seeing it. Yeah. Right.

Lisa: Right. But there are lots of things you can do to get the visions to go away.

Interviewer: So is there a point in vision loss where it starts to happen? Is there a threshold where if it's going to happen, it might start happening at that point?

Lisa: Well, what we see is usually people who have more of a severe vision loss also maybe a field. A visual field defect where they have a blind part of their vision and that's actually where they're going to see the hallucination is in that blind spot.

Interviewer: And do some people still see some real things and then that's also the hallucinations are on top of that as well?

Lisa: Yes. Hallucinations can be almost superimposed on top of that as well. Yes.

Interviewer: Like virtual reality in a way.

Lisa: Yes. Exactly.

Interviewer: Yeah. So is it primarily older people that get the condition, or is it just we tend to think of it in older people because they're more likely to have lost their vision?

Lisa: Exactly. It can happen to anyone who has had vision before. Your brain has to know how to see. It has to be used to that visual stimulus. But like you said, most blinding conditions are happening in the elderly or they're age-related conditions. So that's the population that we're more likely to see them in. It can happen in children.

Interviewer: What are some of the specific conditions where it starts happening? So macular . . .

Lisa: Macular degeneration . . .

Interviewer: . . . could be one of them. Yeah.

Lisa: The big one. Glaucoma, diabetic retinopathy. There's many different kinds of conditions that cause blindness. It doesn't really matter. It's not really tied to one condition or another.

Interviewer: Got you. Is it curable?

Lisa: It is not necessarily curable. There are things you can do to get the hallucination to stop. Sometimes they just stop on their own.

Interviewer: Okay. So just because it happens once doesn't mean it's going to continually happen?

Lisa: Right.

Interviewer: Okay.

Lisa: I have some patients who have it continually quite a bit. Other patients it's like, "Yeah, that's happened to me once or twice."

Interviewer: Okay. All right. And what are some of the strategies for managing it?

Lisa: So one thing that you want to do is change the lighting in your room. So if you are in a dim room, turn on the lights, open the drapes. Another thing that you can do is blink rapidly, change your location, do something else, something that engages your brain, whether it's a hobby or talking to someone else, giving your brain another kind of stimulation.

Interviewer: If somebody believes if they or a loved one has Charles Bonnet Syndrome, what should they do at that point? Should they go see an eye doctor? Do you go see somebody else?

Lisa: Well, they can go see an eye doctor. They can see their primary care, but not being afraid to mention that, "I have vision loss and I am also seeing these interesting or not so interesting visions." That doesn't necessarily mean you're crazy. And providers, even though they may have learned about this once in medical school, they don't think to ask people. So if you are a provider that works with elderly people, remembering if they have vision loss to ask, "Do you see things that aren't there?"

Interviewer: Yeah. And frame it.

Lisa: And frame it.

Interviewer: And frame it that this is . . . yeah.

Lisa: We have patients who see things that aren't there and they know that. Is that happening to you?

Interviewer: What about if you have somebody that has lost vision in your life. Is this a conversation you should have with them, just to make it safe for them to talk about it?

Lisa: Yes. I think just opening up that conversation saying, "I heard about this the other day, and I was wondering if that's ever happened to you."

Interviewer: Yeah.

Lisa: It's totally normal.

Interviewer: And I bet a conversation like that could take just a load of stress off of somebody that thinks that they're going crazy, right?

Lisa: Huge.

Interviewer: Yeah. What do you think that the ultimate takeaway that you would like somebody to have as a result of the conversation we had about Charles Bonnet Syndrome?

Lisa: I think the ultimate takeaway is that it is not as rare as we once thought. We find that about one in four of our patients with vision loss have experienced this. So talk to somebody about it. You're not going crazy.

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Interviewer: Those little squiggles that move around in your eyes, I'm talking about floaters, is that something you should be concerned about, and is there anything that can be done about them? We'll find out next on The Scope.

Dr. Brian Zaugg is an ophthalmologist at the Moran Eye Institute. I know I have them, and I know some other people that have them. Floaters, you know, those things where you close your eyes and you see little squigglies moving around, or sometimes if you're looking into a bright light, you might see them? What's going on there and should I worry about them? First of all, what are they?

Dr. Zaugg: Yeah. Floaters are a big annoyance. I see a lot of patients who complain of floaters every day in my clinics. Generally speaking, what they are is they're condensations of a part of the eye called the vitreous. So the vitreous is a gel-like substance in the back of the eye. When you're younger, it'll liquefy a little bit and collapse on itself, and you'll get little floaters of proteins floating around in the surface inside the eye. As those floaters move around, they create a little shadowing on the retina, so the light can't get to the retina and it creates a floater-like symptom for you.

As you get older, that vitreous continues to liquefy and as it liquefies, it actually shrinks. When it shrinks, it pulls away from the retina. It's kind of adherent to the retina in a few places. Where it's more tightly adherent as it pulls away from there, it creates larger floaters. So they generally get more annoying the older you get if you get floaters.

Interviewer: You might see more the older you get, as well?

Dr. Zaugg: Correct.

Interviewer: All right. So it's not going to get any better on its own for me?

Dr. Zaugg: Well, it usually gets better after the initial onset of the floaters.

Interviewer: Okay.

Dr. Zaugg: So when you get the new floaters coming in, they're very annoying, they're large, there's many of them, and then over time they usually do settle down.

Interviewer: All right. Is it something that I should really be worried about, beyond just an annoyance?

Dr. Zaugg: So when you get new floaters, you should always be thinking about anything else that's going on with the eye. There are definitely associated symptoms that you should pay attention to. A new floater can be a sign of, what we most commonly fear is a retinal detachment. If you have a retinal detachment or a tear in the retina, those can be, not life threatening, but vision threatening symptoms. So if you have flashing lights, that can mean that there's some tugging or mechanical motion that's happening to the retina. The retina only knows light. So if something stimulates it, it sends a message back to the brain that you saw light.

The other thing that's really bad with floaters is if you have a dark curtain blocking part of your peripheral vision. That could mean that the retina has folded over on itself and it's detaching, and that can mean that you're having a more serious complication from floaters.

Interviewer: So if I understand correctly, floaters on their own without other symptoms just are part of life.

Dr. Zaugg: Correct.

Interviewer: But with some of those other symptoms you mentioned, then that can be an indication of a more serious issue?

Dr. Zaugg: Correct.

Interviewer: Okay. How often does it get into that serious world, generally?

Dr. Zaugg: It's more common the older you get.

Interviewer: Okay.

Dr. Zaugg: So if you're over the age of 50 and you're getting a lot of new floaters, then you're a little bit more worried about it, because you're getting the complete collapse or separation of the vitreous from the retina, and it can pull the retina with it. So those are times when you really want to get an eye exam to really determine, because you're not going to know for sure if you're having a retinal tear or detachment. Sometimes you have no symptoms other than the floater. So getting a complete eye exam by an ophthalmologist or an optometrist can help to distinguish if it's a more serious eye condition.

Interviewer: That sounds terrifying. But generally, as long as the floaters are the same old floaters, I'm fine?

Dr. Zaugg: Correct.

Interviewer:And is there anything that you can do about, first of all, the annoying floaters?

Dr. Zaugg: Well, generally speaking, they do decrease with time. Again like I said . . .

Interviewer: Understood. Okay.

Dr. Zaugg: . . . if you get a new floater, it usually goes away with time. Either your brain will start to filter out the floater or gravity will actually bring it down in the eye, so it's not in your visual axis. Usually, they'll come up when you're looking at bright backgrounds. So a lot of times when you're looking at a computer, when you're reading, when you're driving on bright, sunny days.

So outside, something that you can do is wear sunglasses. It filters out the floater a little bit. Inside, if you're working at a computer, it's a little bit more tricky. You can get displays that cover the computer screen that kind of filter it a little bit, use a little bit less contrast in your screen. Sometimes that will diminish the floaters as it bothers you.

Interviewer: So it's about decreasing the glare . . .

Dr. Zaugg: Correct.

Interviewer: . . . in those situations?

Dr. Zaugg: Yes.

Interviewer: That's also the gravity thing, is why when I close my eyes, I'll see them float up sometimes, and then I open my eyes and they go away?

Dr. Zaugg: Well, that's usually a little bit of just the eye movement.

Interviewer: Oh, okay.

Dr. Zaugg: Because when your eye closes, your eye actually moves underneath your eyelid and it'll move the floater.

Interviewer: All right. Is there anything else that I should be aware of floaters? My kind of takeaway is they're a part of life for a lot of people. There are some things you can do to minimize seeing them if they're bothersome. If you start getting some new floaters with other symptoms, I should go see someone like you.

Dr. Zaugg: There's a couple other medical conditions that you should be thinking about other things. So if you're diabetic, sometimes floaters can be a sign of bleeding inside the eye. Diabetics have a lot of eye problems when they're uncontrolled. So they usually have an eye doctor that they've been with, and that would be a reason to get an eye exam more quickly than others. Other things that can happen, if you've had a recent eye surgery, that's a warning sign that something could be going wrong. So have your eyes examined.

There's other rare inflammatory conditions of the eye, in a category called "uveitis," where the floaters can actually be conglomerations of inflammatory cells that could be signs of other serious eye conditions. So the bottom line is if you get a new floater, get an eye exam so that they can determine what's causing it. If it is one of these benign floaters, then that's great. You move on with your life. But we have to make sure that there's not something more serious going on.

Interviewer: How often do you recommend somebody get an eye exam, anyway?

Dr. Zaugg: Well, that kind of depends on how old you are, and if you wear glasses, if you don't wear glasses.

Interviewer: Sure.

Dr. Zaugg: If you're doing well and there's no issues with your eyes when you're younger, getting an eye exam every 10 years is probably fine.

Interviewer: Oh, okay.

Dr. Zaugg: As you get into your 40s and 50s, maybe every five years. As you get into your 60s, every year or two.

updated: September 30, 2020
originally published: May 17, 2017