When a Loved One Has Age-Related Macular Degeneration

Caregivers play an essential role in helping people with age-related macular degeneration face their condition with dignity and maintain their independence. Here are some simple basics to help you cope with the complexities of dealing with this serious eye condition. We also encourage you to explore other resources that will make life easier, healthier, and happier for both you and your loved one.

As a caregiver, your role involves empowering and encouraging your loved one to make important treatment decisions to preserve any remaining vision. To do so, you should first educate yourself by:

• Speaking with your loved one's physician
• Meeting with other people who have age-related macular degeneration
• Getting information from organizations that are devoted to helping people with the disease, such as the AMD Alliance International at http://www.amdalliance.org/
• Learning more about different treatment options, which are available for people with some kinds of age-related macular degeneration. One option is Visudyne® photodynamic therapy, which is discussed at http://www.visudyne.com

You can accompany your loved one to physician's appointments and treatment sessions. Make a list of questions—yours and your loved one's—and take them with you. And ensure that you both are getting the information you need to understand your loved one's situation and determine which treatment is the best one.

The most common side effects with Visudyne were injection site reactions (extravasation [some of the drug may leak from the vein] and rashes), blurred vision, decreased visual acuity, and visual field defects.

Infusion-related transient back pain occurred with Visudyne in a few patients. Infusion induces temporary photosensitivity; exposure of skin and eyes to direct sunlight or bright indoor light should be avoided for 5 days.

Severe vision decrease (> 4 lines) was reported within 7 days in 1% to 5% of patients. Partial recovery occurs in some patients. Do not get re-treated until vision completely recovers to pretreatment levels and potential benefits and risks of subsequent treatment are carefully weighed.

• Making sure strategically placed bright lights are available throughout the home.
• Choosing items for the home in strong, contrasting colors that a person with limited vision can distinguish.
• Ensuring the loved one has aids to daily living such as magnifiers and telephones with a large-print face.
• Letting your loved one decide how things should be organized, labeled or adapted in the home.
• Always putting items back where you found them.
• Anticipating obstacles and removing them before an accident occurs.

At the same time, try not to be overprotective. Sometimes, caregivers, family and friends can show their concern and support just by being there. Friendly visits and organized outings can be of great benefit, both for your loved one and for you. Humor is also an effective way to cope with the challenges presented to people who are blind or visually impaired.

Encourage your loved one to join a group of others who have age-related macular degeneration. Support groups can be invaluable. They offer the opportunity to learn how others are coping with their vision loss and how they have learned to do old things in new ways. Vision rehabilitation workers and eye-care professionals can also provide creative solutions to the challenges of living with various eye conditions.

If your loved one is not a joiner, however, it's possible that one-to-one counseling may provide a needed outlet for talking about life changes and learning new coping strategies.