Wet AMD is linked to both an increased risk of legal blindness and clinical depression. What can be done?
You once led life on your own terms. But ever since you developed wet AMD, a disease that causes abnormal growth of blood vessels in the eye, you may have lost your independence and even your once optimistic outlook. This condition often goes hand in hand with aging and can lead to blindness, the prevention of which is naturally at the center of first-line treatments. But the impact of vision loss can lead to the end of independence, so living with wet AMD can also have emotional and psychological consequences.
Currently affecting 11 million Americans, age-related macular degeneration (AMD) is the leading contributor to worsening central vision loss in people age 50 and older. And central vision is needed to perform basic tasks such as reading, driving, and recognizing faces—the fundamental skills for being independent in the world.
Wet AMD is the most severe form of the disease, accounting for only 10-15% of all AMD cases. Yet it is linked to 90% of people who develop legal blindness caused by AMD. And research shows that up to a third of all AMD patients experience clinical depression, defined as intense feelings of sadness, low mood and/or worthlessness almost every day for at least two weeks, while struggling with other symptoms, such as sleep problems. or change in appetite, according to the Cleveland Clinic. When you consider that 1.5 million people in the United States are affected by the advanced stages of wet AMD, according to the latest research, what becomes crystal clear is that limited sight leaves many people in the dark, in more ways than one.
It’s not just about your eyes
Unlike the more common, but gradual, dry AMD (where retinal deterioration is associated with aging-induced thinning and drying of the macula and tiny clumps of protein), the progression of wet AMD can be very fast and very sudden.
“One day you wake up and the straight lines you once saw are twisted, and you’ve lost some of your vision,” says Silvia Sorensen, Ph.D., associate professor at the University of Rochester at the Center for Community Health and Prevention in New York. “But the dry kind [of AMD] can also turn into a wet form, or you can get wet AMD in one eye and a dry form in the other. So there is uncertainty… which can be very stressful,” she adds.
And despite advances in medical treatments that can stabilize sight in wet AMD, not all patients experience the benefits, and these interventions typically do not reverse vision loss or provide a cure.
The literature on what can result is pretty clear: Ongoing low mood is all too common in patients with AMD, a byproduct of vision loss. In some cases, it can also be pre-existing, meaning it’s then exacerbated by symptoms of eye disease, Sorensen says.
Whatever its trajectory, wet AMD-related depression is usually rooted in how deteriorating vision can translate into feelings of lack of control over one’s life, inadequacy and helplessness, Sorenson says. Mobility restrictions can also lead to social isolation. “If you’re a musician and you can’t play anymore… those losses are deeper in some ways than what you actually see. Losing valued activities, losing the things that are your passion [which] connecting to other people is really the mediating factor for depression in people with vision loss,” she notes.
See things that don’t really exist
Another puzzling consequence of vision loss, including those who begin to lose their sight to AMD, is Charles Bonnet Syndrome (CBS). The condition, named after a Swiss scientist who first described it, is characterized by visual hallucinations.
According to the non-profit Charles Bonnet Syndrome Foundation, CBS affects between 20% and 40% of people with macular degeneration.
In this case, the brain begins to make things up due to the lack of visual stimulus from the damaged eyes, Sorensen explains. “You start to see elaborate patterns or fields of flowers – some people report seeing an entire castle in front of them! It’s not really a mental health issue, in the sense that they’re quite aware that it’s not It’s not really there, but it makes them feel like they’re going crazy if they don’t know what to expect.
Anxiety skyrockets for many reasons
Another factor that causes apprehension is a common but very effective treatment for wet AMD: eye injections. “Patients aren’t happy when we tell them what to give them,” says Josef Huemer, MD, consultant ophthalmologist at Moorfields Eye Hospital NHS Foundation Trust in London, UK. To date, nothing works as well as these injections, which are given every one to three months, depending on the patient’s needs. In fact, a review published in 2020 found that the use of anti-VEGF drugs nearly halved the incidence of AMD-related blindness.
The good news is that most people with wet AMD eventually get used to this treatment, especially since many patients experience a slowing of their disease progression, says Sorensen. (In a fraction of cases, patients even see an improvement in vision).
Still, anxiety can increase with vision loss, although science is unsettled on its prevalence in people with wet AMD, according to a 2015 article published in the journal Clinical ophthalmology. “There’s a consensus that anxiety is also a problem, although the numbers aren’t as clear cut,” says Sorensen. “Even in terms of depression, the range [of prevalence] is really big; it depends on the sample you’re working with, the age of the person, their degree of impairment, all of those things.
As things stand, the mental health implications of wet AMD are underestimated, notes Dr. Huemer. “From a clinician’s perspective, if it was possible to take the time to really talk to patients, everyone would love to do it,” he says. “But if you look at outpatient services, we’re overrun with patients.” Which means sorting out the emotional ramifications of illness isn’t often the first priority in a busy doctor’s office.
The fight is real
Then there are people with wet AMD who just won’t admit they’re suffering mentally, adds Dr. Heumer.
Sorensen suggests that ophthalmologists — as a matter of principle — screen all AMD patients for mental health conditions like depression so that people with high scores are automatically referred to mental health professionals upon diagnosis. Ophthalmologists can do a lot of good by talking to their patients, she says, about the emotional impact of vision loss and, if necessary, referring them to therapy. before depression worsens.
Also, low vision hacks that can help people adjust to their new situation can be very helpful. For example, putting bump dots on a microwave or stove can help you find your way around its knobs and operate it safely just by touch, she says. Seeking low vision services, which teach such advice, “are really simple interventions, but they make a huge difference in quality of life.”
Patients should also get help planning how to manage daily tasks when their condition worsens, including how to tell their family about it in order to lead an independent life for as long as possible. For guidance, visit the American Academy for Opthalmology website for a wide range of resources.
Although there is growing awareness of the emotional and psychological effects of vision loss, Sorensen thinks integrating preventive services into clinical practice will likely take longer.
“Most ophthalmologists are very focused on fixing the eye – and if they can’t fix it, they might say something like, ‘There’s nothing I can do,'” she says. “But losing your sight does not necessarily mean losing hope. This is an important message to convey.