April 17, 2024/Eye Care

5 Tips for Coping With Geographic Atrophy

Preserving your social life and protecting your mental health are key to living well with vision loss

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Geographic atrophy (GA) is the final stage of dry age-related macular degeneration (AMD), the most common cause of vision loss in people over 60 years old.

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Dry AMD happens when the part of your retina that handles detailed, central vision — the macula — forms yellow protein deposits called drusen, which dry and thin the macula. Geographic atrophy can develop in one or both eyes. While severe cases can involve total central vision loss, people living with the condition do retain their peripheral vision.

Ophthalmologist and retina specialist Ananth Sastry, MD, says that the fact that geographic atrophy doesn’t cause total blindness doesn’t make it any less debilitating — or the impact on a person’s daily life any less traumatic. He shares five tips for coping with the physical and psychological impact of GA.

How does geographic atrophy impact your sight?

“A person with geographic atrophy may observe that things in the center of their vision start to become blurred,” Dr. Sastry explains. “When the atrophied area becomes large enough, they might notice a blind spot in the center of their vision. It can get progressively larger, making things very hazy, or completely absent.”

While geographic atrophy only affects central vision, Dr. Sastry is quick to note that most of the things we do in a day require central vision.

“Visual tasks that require central vision, like reading, viewing a television or computer screen and driving may become progressively more challenging over time. It’s often difficult to discern facial features or, for example, see a clock on the wall,” he elaborates. “Advanced geographic atrophy that affects both eyes can significantly affect a person's life and their activities.”

Coping with vision loss from geographic atrophy

Make no mistake: Vision loss is loss. And it’s healthy to grieve that loss. The process of moving forward can be physically, mentally and emotionally taxing — and may require some significant lifestyle changes. But coming to terms with (and learning to thrive despite) your visual impairment isn’t something you have to do alone.

Dr. Sastry recommends implementing the following five things to help adapt to life with vision loss caused by geographic atrophy.

1. Start low-vision rehabilitation as soon as possible

Whenever Dr. Sastry diagnoses somebody with advanced macular degeneration, he refers them to a low-vision specialist or rehabilitation team. He says that working with these skilled providers can be a real game changer.

Low-vision specialists help people with all kinds of visual impairments do three things:

  1. Adapt to life with low vision.
  2. Retain and make the best use of any vision a person still has.
  3. Preserve one’s lifestyle and independence as much as possible.

A low-vision specialist will assess your level of impairment and recommend different tools to help you regain function. In some cases, that means getting occupational therapy, joining a class or participating in a low-vision support group. In other cases, it’s all about prescribing low-vision assistive devices and getting you connected to service providers.

Their recommendations and support will be tailored to your personal needs and circumstances.

Counseling not really your thing? Not really jazzed about seeing a mobility specialist? We get it. But Dr. Sastry maintains that seeing a low-vision specialist is a hassle worth going through.

That’s because central vision isn’t just something we use for “daily functioning,” which sounds terribly dull. It also enables you to participate in hobbies and continue developing interests that usually require central vision. Whether you’re a bookworm, a bowler, a birder, a crafter, a carpenter or a cook, you’re relying on your central vision to do the things you love.

“Seeing a low-vision specialist may allow someone to retain the ability to do some of their favorite recreational activities — or at least do them for a while longer” Dr. Sastry notes.

2. Make your home low-vision friendly

There’s no place like home. But if you’re living with geographic atrophy, home can also be hazardous. Dr. Sastry recommends working with your low-vision specialist to determine which home modifications will allow you to maintain your independence. A few recommendations include:

  • Clearing the floors of clutter, wires and other possible tripping hazards.
  • Adding lighting — and making the best possible use of the natural light from outside.
  • Choosing your colors wisely. The more contrast there is between your furniture and the wall, for example, the easier it is to distinguish between the two.
  • Adding grab bars, shower benches and other assistive devices to prevent falling.
  • Removing rugs and making sure the surfaces in your home are non-slip.
  • Using both high- and low-tech assistive devices — like text-to-speech software, brightly colored stickers and prescription bottle readers.
  • Installing alarm systems, paging devices or tracking apps so you can get help immediately if you need it.

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3. Find accessible transportation options in your area

While it’s possible to drive during the early stages of macular degeneration, by the time a person’s vision loss has progressed to the point of a geographic atrophy diagnosis, it’s usually off the table. If you’re not sure whether or not driving is still safe, speak with your retina or low-vision specialist.

Dr. Sastry understands that losing the ability to drive can be a big blow. But adds that — even if you don’t live in an area with public transportation — there are options that can help you preserve your independence.

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“This is an instance in which, fortunately, technology has provided a lot of assistance,” he says. “Rideshare services have become ubiquitous throughout much of the country and have been very helpful to people with vision loss. There are also additional services like grocery and pharmacy delivery services.”

Depending on where you live, there may also be services available specifically tailored to the needs of people with visual impairments. That’s just one of many reasons it’s a good idea to get (and stay) connected with other people after your diagnosis.

4. Maintain an active social life

Dr. Sastry believes that staying active and involved in your community is critical for people living with geographic atrophy.

“People living with significant visual impairment often feel very isolated, especially when they get older,” he explains. “They don’t feel like going out or they don’t think they have the ability to go out.”

This is a major concern in the GA community. According to the 2022 Geographic Atrophy Insights Survey, one-third of all respondents had recently withdrawn from their social lives because of their disease. The resulting loneliness can quickly devolve into depression and anxiety.

“Maintaining a social life is absolutely critical, not just to mental health, but to general health as well,” Dr. Sastry adds. A 2008 study explains it like this: People who have both AMD and depression have two different kinds of disability that magnify each other’s impact. That’s why protecting your mental health is as important for your body as it is for your brain.

5. Guard your mental health

A lot of people struggle with the whole “asking for help” thing under the best of circumstances. So, it’s no wonder that getting a new diagnosis and adjusting to life with a new physical impairment can leave people feeling vulnerable.

But Dr. Sastry urges you to reach out — to your providers, your community and your loved ones — when you need support. Vision loss is undeniably difficult. But people with blindness and low vision have worked hard to build a supportive community that you can tap into wherever you are.

  • Join a support group. Whether you meet up with a few friends you met at your local low-vision clinic or talk online with folks from around the globe, getting to know other people who are visually impaired can be both enlightening and empowering.
    “Being part of a support group can not only provide a source of community,” Dr. Sastry says, “but also an understanding that you're not facing the challenges of geographic atrophy alone.” The practical advice and emotional connections you can forge talking to people who’ve been in your shoes are worth the initial awkwardness of meeting new people.
  • Tell your provider about mental health concerns. Your retina specialist may be focused first on your macular degeneration, but, as Dr. Sastry explained, they’re well aware that your emotional state can influence your physical state. If you’re struggling to cope or feel like your mood or behavior has changed, let them and the rest of your low-vision team know. Remember: Mental health symptoms are symptoms. Sharing them with your providers isn’t whining. It’s being an active participant in your healthcare.
  • Consider therapy. Many low-vision teams include mental health professionals. If yours doesn’t, consider seeking out a counselor. They can help you sort through complicated feelings. Just as important, they can also teach you stress reduction, coping and mindfulness techniques to use in your daily life.Pet therapy may also be an effective form of functional and emotional therapy,” Sastry suggests. “Not only do guide dogs provide a service — they help you navigate the world when it's difficult to see — but they can also offer meaningful companionship and a source of joy.”
  • Get to know your resources. Local, national, international and online: There’s a wealth of information and assistance available for people adapting to sight loss, if you know where to look for it. Not sure what to tell your employer about your sight loss, or what accommodations to request? Don’t guess: Check out The American Foundation for the Blind's resources on disability law. Want to learn more about guide dogs? Hit up The American Council of the Blind’s list to find organizations in your area. If there’s a question you can’t find an answer to, let your low-vision team know. They’ve probably been asked before!

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It’s OK to ask for help

Again, we understand that many people may struggle with asking for help. Getting a new diagnosis and adjusting to life with a new physical impairment can leave people feeling vulnerable.

But again, too, Dr. Sastry urges you to reach out when you need support.

“It can sometimes feel like you’re the only one who has geographic atrophy,” he says. “But that’s absolutely not true. There are many, many people who are going through the same thing. And there are many, many people who want to help.”

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