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’re reading might be “she,” but you see only the “he” part. Or $129 might look like $12 and then $129 when you glance back.
That leaves people wondering: Well, then, what’s the price?
In more advanced stages of the disease, your central vision may seemingly “white out” or go grey when you look straight at things or people.
It’s easy to get scared or upset when the visual information you take in comes and goes or isn’t clear. And for some, these sight setbacks can lead to feelings of depression or anxiety.
But what I see most often is that people with GA get really frustrated — everything takes longer; everything is slower. And sometimes they may need to rely on other people for everyday things, like paying bills or driving to the store. I find it’s this loss of independence that bothers people the most.
As an optometrist who specializes in low vision, I help people manage the individual mental, emotional, and physical impacts of their disease. What I emphasize to folks is that no matter what degree of vision loss they have, there are ways to adapt. It’s just a matter of finding the right solution for you.
The Confusion That May Come With Geographic Atrophy
I often explain to people that their lived experience may not match up with what they hear from their retina specialist. For instance, your visual acuity according to the eye chart may seem really good, yet you still read really slowly or have trouble spotting uneven pavement when you walk down the street.
To get to the source of this disconnect, it’s important to understand how this disease affects vision.
GA causes progressive and irreversible loss of the cells of the macula/central vision 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 at things.
But the disease may also cause a “doughnut” of damage around the macula in the early stages. 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 have to go back and reread things a lot, 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 span. For instance, you may read three characters to the left and maybe seven characters to the right every time the center of your eye looks straight at a letter or number in a sentence.
Sometimes this leads to frustration from family members. People will say they don’t understand how their mom can see a really small thread on the floor, but she can’t read anything. And I try to explain to them that when she drops something on the floor, she sees it out of the side part of her eye. But if she looked at directly at it, it would seemingly disappear.
People with GA also have trouble with contrast sensitivity, which is rarely measured outside of a low vision evaluation, but contrast sensitivity is important when it comes to people’s faces. My skin may appear the same color as my lips, for example.
Tips to Avoid Social Isolation
A loss of central vision can affect socialization in a couple of big ways. For starters, you may not be able to drive to parties or events, especially if they happen at night. And when you do go out, you may not be able to spot friendly faces from across the room.
Now imagine that you’re older and transitioning into community living. You may worry that people will think you’re snubbing them if you don’t say hi or you reintroduce yourself because you’re not sure if 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 boost your social life and well-being while living with GA.
Some key things you can do are:
Go to low-vision rehab. As low vision specialists, we don’t make your vision better. Instead, we tackle all kinds of activities and teach you to adapt to them with low vision. Some of these modifications may take time to learn, but they can make everyday life with GA a lot easier.
Get your best corrective glasses. This might sound simple, but it’s actually not. Because it may seem like you should get stronger reading glasses as your vision gets worse. But that can magnify the good as well as the bad parts of your vision. As your GA progresses, less magnification may help you see better up close.
Control lighting. Consider wearing a wide-brimmed hat or a cool pair of custom-tinted glasses to a party or event. You may see better if you control how light hits your eyes.
Ask friends and family for support. If you go to the grocery store or a social event, ask whoever you’re with to give you a heads-up about who’s coming your way. Ask your spouse to say, “Hey, that’s Sally coming down the aisle,” for example.
Call a car. GA can make it unsafe to drive on your own. But the good news is there are lots of rideshare services and apps you can use with your smartphone, and some are geared toward older adults. There may also be community ride options available if you ask your doctor or check with your local health department.
Find new ways to socialize. We’ll connect people with activities organized by local senior or community centers, or in some cases, we can connect them to volunteer groups who might come read to them or arrange other activities.
Connect online. The beauty of technology is that almost everyone I treat has a smartphone. And lots of people play online games like Words with Friends. Maybe their gaming partner isn’t right in front of them, but they’re still spending time socializing.
Finding the Right Solutions
If you have GA, there are lots of ways to improve your ability to see and do things, but it’s key that you grasp what is and isn’t possible.
For instance, you can use specialized devices to keep up your stamp collection or see paintings in a museum. And lots of folks with GA get back into reading when they switch from printed material to electronic tablets.
But you may need to let go of the idea that you’ll still be able to drive cross-country at night in the dark while it’s raining.
Often, the key to well-being for older folks isn’t taking up new hobbies or socializing. It’s little things like maintaining control over their administration. For some, that may mean we set you up with a tablet to do online banking or we help you find new ways to manage your medication.
If you have GA, what’s most important is to think about what you actually like to do and how you want to stay connected. There are low-vision modifications you can do for pretty much everything. Even if 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 they have ups and downs but overall, they’re doing OK. When the balance tips toward more bad days than good days and there are other symptoms of depression (like sleeping too much or eating a lot less), then that can be a 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 folks, but it can be enough of a driver when you add it to the physical losses that come with age.
Though we have to be careful about labeling certain behaviors as depression in older adults.
For instance, your loved one may not go out as much as they did when they were younger. But that may not be a sign that something is wrong. Many folks in their 70s, 80s, and 90s may be very pleased just enjoying 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 to have trouble with their vision?
Really talk to your loved one who has GA. Whether they’re your spouse, friend, or family member, it’s important to check in and have those conversations about mental and emotional health.
