Helping a Loved One Cope with a Macular Degeneration Diagnosis

Person living with age related macular degeneration comforted

According to the Bright Focus Foundation, more than 11 million people in America suffer from some form of Age-Related Macular Degeneration (AMD). It is a cruel and irreversible disease that destroys the “straight-ahead” vision that is necessary for driving, reading, and recognizing people.

Receiving your diagnosis of AMD can be a heartbreaking moment, but there are many ways to adapt to declining vision. If a loved one has received this diagnosis, there are several ways you can help them cope with it.

There are different types of Macular Degeneration.

AMD can be diagnosed in two ways: as "dry" macular degeneration or "wet." Macular degeneration is a disease whereby blood vessels in the eye and retina weaken and periodically bleed, causing scarring and vision destruction. In its "dry" form, there is no active bleeding, and patients may not yet notice their vision is compromised. In its "wet" form, the degeneration is active, and if imaging is done upon the eye, bleeding, fluid build-up, and scarring can be seen on the images.

Typically, the treatment during dry macular degeneration is to take a "wait-and-see approach." Your doctor will provide you with a small graphic and instructions to look at it daily to notice any vision changes. When the disease progresses to its wet form, there are some treatment options for you to research and consider.

Look for resources within the community.

Encourage your loved one to ask their health professional for information or links to resources. Many communities also offer services or businesses to help people with low or no vision. These organizations offer stores with low-vision aids, informational programs and seminars, support groups, and advocacy on issues facing those who have compromised vision.

Before you can help a loved one adapt to the disease, it can be helpful to learn all you can about it and its progression.

Talk honestly but kindly about coming vision changes.

AMD is a disease that typically strikes people as they age. It is the latest trend for elderly adults to want to "age in place" in their own home for as long as possible, but one of the things that can make that very difficult is compromised eyesight.

While they are in the dry stage of the disease, most people do not want to believe that their condition will ever progress or worsen. However, while their eyesight is still functioning, that is the time to discuss plans. How can their house be adapted to help them as it becomes harder to see? Is there a plan in place for someone to regularly help them with paperwork? How will they handle losing their ability to drive? These are all questions that are best worked out before vision becomes impaired.

Buy and practice with low-vision aids.

There are a number of wonderful tools that can help with reading and close-vision tasks. These include magnifying glasses, LED-lit magnifiers, magnifying lamps, and even dedicated reading machines and software that can enlarge text.

Whatever tools you buy, including larger print pillboxes or other adaptive tools, you will want to become very familiar with using them before it becomes harder to see. It can even become difficult to locate on/off switches, depending on how items are designed, but if your loved one uses a tool and creates muscle memories using it, they will be more comfortable with it as their vision declines.

Other adaptive tools include large print playing cards and books, books on tape, software that reads Internet pages to you, raised "dots" you can stick on appliances and switches to help you use them through feel, and oversized keyboards and phones, as well as voice-activated apps and appliances.

Adapt your house for vision loss.

The most important thing to help your loved one consider as they face vision problems is how to adapt their house or apartment to their future low-vision needs.

Start now to help them make their home easier to navigate. Make sure walking paths are clear. Consider working with them to remove as much clutter as possible to make surfaces easier to clean. Spend time in each room, cleaning out cupboards and moving their most frequently used items to the front, where they can be easily accessed and seen.

Whatever adaptations you make to a person's living space, try and make them before they lose their vision. If they can form the habit of keeping things in their drawers, cupboards, and on shelves where they know they'll be, it will be easier to stay independent even when they can't see as well.

Add overhead lights to work areas and night and floor lights along hallways and on staircases.

Be patient with the person you are helping and let them know there are many ways they can remain independent even if they are not able to see as well as they'd like.