Supporting a loved one with wet AMD

Age-related macular degeneration (AMD) is a leading cause of vision loss in older adults in the United States. AMD affects a person’s central vision—the ability to clearly see things that the eyes are directly looking at. Central vision loss interferes with a person’s ability to read, drive, recognize faces, and see details, making it difficult to complete many everyday activities.

Wet AMD is an advanced form of age-related macular degeneration where abnormal blood vessels form underneath the macula. These blood vessels do not function properly, and leak blood and fluid into the eye. This can cause more severe vision loss that gets worse quickly.

Vision loss is distressing to live with. Many people find that conditions like wet AMD reduce their independence. Many find that it impacts their mental health. Many will require the support of family and loved ones as they seek treatment and learn to adapt to changes in their vision.

What type of support does a person need?

As a caregiver for someone with wet AMD, one of the most difficult questions to answer is also one of the most straightforward—what does my loved one need from me? Here are a few things to keep in mind:

• AMD is a different experience for different people, and the answer to this question will vary from one person to the next.
• A good place to start is by having a conversation with your loved one and talking about what they need or what has been difficult or challenging recently.
• Adjusting to having central vision loss is difficult, and it can take some time for a person with AMD to understand what they need.

Another way to answer the question is by looking at some common challenges of living with central vision loss.

Providing practical support

While support comes in many different forms, in many cases, it can be divided into two broad categories. These are practical support and emotional support.

Practical support can be thought of as problem solving—it’s about taking things that have become difficult because of vision loss and finding solutions. Examples include:

• Make the home environment safe and accessible. Keep things organized, pick up clutter, install handrails in areas where they are needed, and make sure there is enough lighting in the home.
• Help with daily activities. Your loved one may have a difficult time with daily activities that were once routine, such as cooking, cleaning, and grocery shopping.
• Provide transportation. A person with AMD may no longer be able to operate a vehicle safely, and may need transportation to appointments, errands, and social events.

Encourage your loved one to maintain independence and allow them to do things on their own as much as possible, while also being there to assist when they need it. Loss of independence is often one of the most difficult adjustments when living with vision loss.

Providing emotional support

Emotional support refers to the things you do to help a loved one cope with the ways that vision loss affects their moods, mental health, and emotional wellbeing.

• Listen and be present. Vision loss can cause a range of moods and emotions, including sadness, frustration, and anger. Listen to your loved one and validate their feelings. Offer emotional support by being present and available.
• Encourage social connections. Vision loss can be isolating. Encourage your loved one to stay connected with family and friends. Consider arranging social activities or outings to help them maintain social connections.
• Provide emotional outlets. Engage your loved one in activities that they enjoy. Staying engaged with activities they enjoy can provide a sense of purpose and offer a much-needed emotional outlet.
• Connect them with support groups. Support groups for those with AMD can provide a sense of community and a space to share experiences and emotions. Encourage your loved one to attend a support group and consider attending one with them.

It’s also important to mention that depression is more common among people who experience vision loss. Older adults are also at a greater risk of depression. Be aware of any changes in your loved one that could be a sign of depression, such as persistent feelings of sadness or hopelessness, loss of interest in nearly all pleasurable activities, and feelings of guilt or worthlessness. Mental health is also an important topic that should be a part of the discussion with your loved one’s healthcare providers.

Caring for a family member is often demanding. Remember to take care of yourself as well. Seek support from family, friends, or a support group, and remember to prioritize your own health.