Caring for Your Mental, Social, and Emotional Well-Being with Geographic Atrophy

By Judith Goldstein, OD, as told to Keri Wiginton

Geographic atrophy (GA) can be visually confusing.

People often tell me that one minute they see something and the next minute they don’t. For example, the word you read may be “she,” but you only see the “he” part. Or, $129 might look like $12, then $129 when you look back.

This makes people wonder: So what is the price?

In more advanced stages of the disease, your central vision may seem to “fade” or turn gray when you look directly at things or people.

It’s easy to become frightened or upset when the visual information you take in comes and goes or isn’t clear. And for some, these vision problems can lead to feelings of depression or anxiety.

But what I see most often is that people with GA are really frustrated: everything takes longer; everything is slower. And sometimes they may need to rely on other people for everyday tasks, like paying bills or driving to the store. I find that it’s this loss of independence that bothers people the most.

As a low vision optometrist, I help people manage the individual mental, emotional and physical impacts of their condition. What I stress to people is that no matter what level of vision loss they have, there are ways to adapt. It’s just a matter of finding the solution that’s right for you.

The confusion that can accompany geographic atrophy

I often explain to people that their lived experience may not match what they hear from their retina specialist. For example, your visual acuity according to the eye chart may seem very good, but you still read very slowly or have difficulty spotting unevenness in the sidewalk when you walk down the street.

To identify the source of this disconnect, it is important to understand how this disease affects vision.

GA causes progressive and irreversible loss of macula/central vision cells and can lead to vision loss. This is the light-sensitive part of your eye that sees and transmits details and colors when you look straight into your eyes.

But the disease can also cause “doughnut”-shaped damage around the macula at an early stage. And you lose pockets of your visual field around the center. This can make simple tasks like shopping or reading labels more difficult. You may often have to go back and reread things, and numbers are often harder to read than words.

This happens because we don’t read one character at a time. We see a whole visual expanse. For example, you can read three characters to the left and perhaps seven characters to the right each time the center of your eye looks directly at a letter or number in a sentence.

Sometimes this leads to frustration on the part of family members. People will say they don’t understand how their mother can see a tiny wire on the floor, but she can’t read anything. And I try to explain to them that when she drops something on the ground, she sees it out of the side of her eye. But if she looked directly at him, he would seem to disappear.

People with GA also have problems with contrast sensitivity, which is rarely measured outside of a low vision assessment, but contrast sensitivity is important when it comes to faces. My skin can be the same color as my lips, for example.

Tips to Avoid Social Isolation

Central vision loss can affect socialization in several important ways. For starters, you may not be able to go to parties or events, especially if they take place at night. And when you go out, you might not be able to spot the friendly faces across the room.

Now imagine that you are older and transitioning to community living. You may worry that people will think you’re snubbing them if you don’t say hello or if you re-introduce yourself because you’re not sure you’ve met before. You may be too embarrassed to go out and meet new people or try new things.

But there are ways to improve your social life and well-being while living with GA.

Some key things you can do are:

Go to rehab for the visually impaired. As low vision specialists, we do not improve your vision. Instead, we cover all kinds of activities and teach you how to adapt to them with low vision. Some of these modifications may take time to learn, but they can make daily life with GA much easier.

Get your best prescription glasses. This may sound simple, but it’s actually not the case. Because it may seem like you should wear stronger reading glasses as your vision deteriorates. But it can amplify both the good and the bad sides of your vision. As your GA progresses, lower magnification can help you see better up close.

Control the lighting. Consider wearing a wide-brimmed hat or a pair of custom-made tinted glasses to a party or event. You may see better if you control how the light hits your eyes.

Ask your friends and family for support. If you’re going to the grocery store or a social event, ask the person you’re with to warn you who will be coming up to you. Ask your spouse to say, “Hey, it’s Sally coming down the aisle,” for example.

Call a car. GA can make driving alone dangerous. But the good news is that there are plenty of ride-hailing services and apps you can use with your smartphone, and some are aimed at seniors. There may also be community transportation options available if you ask your doctor or check with your local health department.

Find new ways to socialize. We will connect people with activities hosted by local senior or community centers, or in some cases we may connect them with volunteer groups who could come read to them or organize other activities.

Log in online. The beauty of technology is that almost everyone I treat has a smartphone. And many people play online games like Words with Friends. Maybe their play partner isn’t right in front of them, but they still spend time socializing.

Find the right solutions

If you have GA, there are many ways to improve your ability to see and do things, but it is essential that you understand what is possible and what is not.

For example, you can use specialized devices to maintain your stamp collection or view paintings in a museum. And many people with GA return to reading when they move from printed materials to electronic tablets.

But you may have to let go of the idea that you can still drive across the country at night in the dark while it’s raining.

Often, the key to older adults’ well-being is not taking up new hobbies or socializing. It’s about small things like maintaining control over their administration. For some, that might mean giving you a tablet to do online banking or helping you find new ways to manage your medications.

If you have GA, the most important thing is to think about what you actually enjoy doing and how you want to stay connected. There are low vision modifications you can do for just about anything. Even though it’s difficult, we can usually make it work if it’s something important to you.

How to spot depression in your loved one

Many people with vision loss tell me that they have ups and downs, but overall they are fine. When the scales tip toward more bad days than good days and there are other symptoms of depression (like sleeping too much or eating a lot less), this can be cause for concern.

The median age of the people I treat is about 77, and I don’t find that GA triggers depression in most people, but it may be enough of a factor when added to the physical losses that accompany age.

However, we must be careful about labeling certain behaviors as depression in older adults.

For example, your loved one may not go out as much as they did when they were younger. But this may not be a sign that something is wrong. Many people in their 70s, 80s and 90s can be very happy just spending time at home.

What’s important is to take a look at your loved one’s baseline. What was this person like before they started having vision problems?

Really talk to your loved one who has GA. Whether it’s your spouse, friend, or family member, it’s important to check in and have conversations about mental and emotional health.

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