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Easing AMD:
Caring for a Loved One with Diminishing Central Vision
By Dr. Marjan Farid

As we age, many of us will start noticing changes in our vision as we reach for reading glasses more frequently and need regular eye exams to update our existing prescriptions.But many older adults find their vision is further impeded by the onset of age-related macular degeneration (AMD), which can blind people in their straight-ahead (central) vision. Tasks that used to be simple, like selecting the right cereal brand or recognizing the face of a neighbor, become increasingly challenging as the disease progresses. 

As AMD worsens, the need for caregiving goes up. According to a recent study, people living with advanced AMD may need assistance as much as 3.7 hours per day and 4.7 days per week. Given that 72 percent of people living with AMD are cared for by either their spouse or adult child and there is no cure, family caregivers need a good understanding of how to best assist someone with limited central vision and the different treatment options available for their loved one as the disease progresses. Education and practical strategies can also mitigate the stress that caregivers report feeling in caring for someone living with AMD. 

What is Age-Related Macular Degeneration?
Macular degeneration is an eye condition that attacks the macula, the region of the retina responsible for central, detailed vision. Although it does not cause complete blindness, it often leads to a central vision “blind spot,” which you cannot see around as it follows natural eye movement. AMD does not affect peripheral vision; however, while a person will be able to see things to the side, this vision is usually too blurry to discern the object of interest.

More than 15 million Americans are affected by some form of AMD and approximately two million Americans have the advanced (end-stage) form with associated vision loss, which is the leading cause of irreversible vision loss and legal blindness in individuals over the age of 60. Despite the availability of new drug treatments that slow, but not stop, the progression of AMD, the number of people with end-stage AMD is expected to double by the year 2050.

How is AMD diagnosed?
The early and intermediate stages of AMD usually start without symptoms, although some may notice when straight lines like doorways or telephone wires appear wavy or disconnected. Only a comprehensive dilated eye exam, usually given by an ophthalmologist, can detect AMD. The eye exam may include the following:

  • Visual acuity test: This eye chart measures how well you see at distances.
     
  • Dilated eye exam: This exam provides a better view of your retina
    (the back of your eye).
     
  • Amsler grid test: This vision test checks whether you are seeing unusual wavy lines.
     
  • Fluorescein angiogram: This test makes it possible to see leaking blood vessels, a sign of wet AMD.
     
  • Optical coherence tomography: Like an ultrasound, OCT can achieve very high-resolution images of any tissues that can be penetrated by light—such as the eyes.

There are two primary forms of AMD, wet or dry. Wet (neovascular) AMD is caused by abnormal blood vessels that leak fluid or blood into the region of the macula. More common is dry AMD (also called atrophic AMD), which occurs when the layer of retinal pigment epithelium cells (RPE) found in the macular break down or die. (RPEs nourish retinal visual cells and, when they absorb light, help to focus the macula.)

Caring for the AMD Patient
Regardless of whether your loved one has the wet or dry form of AMD, it is very likely to progress over time. Caregivers have an important role to play in helping their loved ones manage their diminishing vision and the tasks of daily living. For example, as the blind-spot grows larger, patients will need more assistance in navigating rooms. It is helpful to describe the furniture location and let them know who is in the room with them as this helps with orientation and reduces patient stress.

Caregivers should also explore low vision centers in their community (e.g., Lions Clubs or Lighthouse organizations), as those organizations can provide education about and access to low vision assistive devices that can improve patients’ ability to read, watch TV or use the computer. A low vision specialist can also train patients to navigate their changing world more effectively.

AMD Treatment Strategies
Treatment for AMD is tailored to each patient and available treatments have improved vastly in just the past ten years. Of course, patients should speak with their physician before starting any treatment, which might include:

  • Vitamin therapy: Often called the AREDS2 prescription (named after a very large government study), this therapy includes a specific combination of vitamins to slow the progression of AMD.
     
  • Eye injections: Called anti-VEGF treatment, the injections (e.g., Avastin, Lucentis, Eyelea) can slow progression of the wet form of AMD.
     
  • Photodynamic therapy: A “cold” laser treatment for wet AMD
    (often in combination with injections).
     
  • Laser therapy: Also for wet AMD, a laser destroys or seals off new blood vessels to prevent leakage.
     
  • Telescope implant: For end-stage AMD patients, a tiny telescope
    (the size of a pea) is implanted in one eye to restore central vision.
    The other eye is left “as is” to preserve peripheral vision. Caregivers
    will need to support patients as they learn to use the telescope implant and their new vision.

Note, cataract surgery is often performed on the AMD patient. However, studies show that there is little central vision improvement for the patient whose condition is advanced.

Case Study:
Linda Supports her mother, Patty

Linda T., from Schenectady, NY, was helping her mother, Patty G., almost daily as her vision worsened due to age-related macular degeneration. Though Patty still lived in the home where she raised her children, Linda visited to help her with shopping, getting to medical appointments and other daily life tasks, like cooking and bill paying. Embarrassed that she couldn’t recognize friends and family any more, Patty also found herself withdrawing from her life, which was hard on the entire family.

It was Linda who discovered that Patty would benefit from the telescope implant for end-stage AMD. She brought Patty to her ophthalmologist to learn about it, then accompanied her to the out-patient surgery and practiced the exercises Patty’s occupational therapists prescribed to master her new vision. Today, Patty can see the faces of her family, read and watch TV, and even travel independently. She walks to her local stores and can navigate train stations. (Driving is not an expected outcome from this procedure because normal vision is not restored.)

The telescope implant is one of the newest treatments for AMD and the only FDA approved surgical option. Like the other treatments, it is not a cure for AMD, but it is proven to restore vision and improve quality of life. Patients must be at least 65 years old and meet other health requirements. Most importantly, their cataract must be in place in the eye to be operated on. The procedure is Medicare eligible.

Attitude and AMD
We don’t realize how much we rely on our vision until it starts to diminish. People living with AMD reportedly experience increased depression and stress, so it’s important to provide both practical and emotional support as the disease progresses. Simultaneously, make sure to take care of yourself. Even the most devoted caregiver needs a break to feel refreshed and ready to take on the next challenge. The good news is that treatment for AMD can slow progression, which means you and your loved one can “see” a bright future ahead.
 


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