Caregiver Resources

Central to Living With AMD: The Support of Loved Ones
None of us could get by without a little help from our friends and family. This is especially true of people living with age-related macular degeneration (AMD).

The type and degree of support needed by people with AMD varies greatly. Some people only need help getting to and from their treatments. Others need help with the basics of everyday life: choosing clothes in the morning; pouring a cup of hot coffee; negotiating steps. Still others primarily need emotional support.

For support-givers, the question becomes: How do I support my loved one in a way that works for us both?


Planning for Support
For some Visudyne^® patients and their loved ones, scheduling rides to and from treatment appointments may be the most challenging part of Visudyne therapy. With a little advance planning, it need not be.

Managing appointments: a little planning goes a long way!
For some Visudyne patients and their loved ones, scheduling rides to and from eye appointments can be challenging. But it doesn't have to be. With careful planning, even people with a limited support network can usually "stay the course" of Visudyne therapy to maximize their chances of treatment success. And support-givers can help those they love in a way that works for them as well.

Keeping track to stay on track
The following are some suggestions for successfully managing your (or your loved one's) AMD and treatment appointments:

1. Be sure to monitor your vision between appointments by using an Amsler grid. Report any change in vision to your eye doctor right away. Schedule an appointment, if needed.
   Click here to learn how you can use an Amsler grid.
2. Schedule any other needed eye appointments well in advance, if possible. With enough notice, even the busiest support-giver can usually find time in his or her schedule to take a loved one to an appointment.
3. Look into senior services in your area. Many larger communities offer transportation services to older or disabled residents at no cost or for a nominal fee. Ask your local community center, American Red Cross chapter, or eyecare professional office staff about additional resources near you.
4. If you must take time off from work for a treatment appointment, let your supervisor know well in advance. This is more than "just" a business courtesy: if a conflict arises, you can reschedule the appointment without letting too much time elapse.
5. If you're a support-giver, find a colleague to cover for you at work and let your supervisor know to maximize the chances you'll be granted time off. If you're a patient, find a friend or neighbor who can step in for your support-giver if he or she must cancel on short notice.

Depression and AMD
Vision loss can be hard to cope with, especially for people who have led active and independent lives. If you suspect depression in yourself or a loved one, seek help right away. Your family doctor is a good place to start.

Depression: common, treatable—and frequently misunderstood
Visudyne is not indicated for the treatment of depression. This information is provided because depression may occur in patients with any chronic illness, including AMD.

Depression is a common illness, affecting about 1 in 10 Americans each year. There are many different causes of depression, including mental changes brought on by physical illness or infirmity. Yet depression shouldn't just be accepted as a "normal" consequence of failing health or getting older.

While depression is a serious illness, it's also treatable. Unfortunately, many people never seek treatment for themselves or a loved one with depression because the signs of this illness are frequently misunderstood. This is especially true in elderly people, whose depressive symptoms may be confused with signs of physical disease.

Recognizing the signs of depression
The National Institute of Mental Health (NIMH) lists the following as symptoms of depression, noting that not everyone who is depressed will have all of these symptoms, or have them all of the time:

• Persistent sad, anxious, or "empty" mood
• Feelings of hopelessness, pessimism
• Feelings of guilt, worthlessness, helplessness
• Loss of interest or pleasure in hobbies or activities that were once enjoyed
• Decreased energy, fatigue, being "slowed down"
• Difficulty concentrating, remembering, making decisions
• Appetite and/or weight loss, or overeating and weight gain
• Thoughts of death or suicide; suicide attempts
• Restlessness, irritability
• Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain

Coping with vision loss
Vision loss due to wet AMD is often rapid; the person with wet AMD may find his or her world changed overnight. Very active or independent people may find it especially hard to cope with the lifestyle changes brought about by sudden vision loss. Therefore, suspect depression if you or your loved one with AMD experiences one or more of the symptoms previously listed and there is no other likely explanation.

Getting yourself or your loved one properly diagnosed and treated for depression is a priority. There are many effective treatments available for depression, including talk therapy and a variety of medications. People of all ages can respond positively to these treatments.

Visudyne is not indicated for the treatment of depression. This information is provided because depression may occur in patients with any chronic illness, including AMD.

Support and understanding are also critical. For instance, don't tell yourself or your loved one with depression to simply "snap out of it." People suffering from depressive illness are no more able to "snap out of it" than people suffering from clearly visible physical ailments.

Finally, immediately report any suicidal thoughts in yourself or a loved one to an appropriate healthcare professional. Never assume such thoughts will pass.

Where to turn for help
A healthcare professional (such as a family doctor) who knows you or your loved one well is a good place to turn when depression is suspected.

You can also check the Yellow Pages for your area under "mental health," "health," "social services," "suicide prevention," "crisis intervention services," "hotlines," "hospitals," or "physicians" for potentially helpful phone numbers and addresses.

In a crisis, emergency room personnel can provide temporary help with emotional problems and can tell you where and how to get further help.

Click here for more tips from the NIMH on coping with depression.

The following online resources may also be helpful:
Website of the National Mental Health Association
www.nmha.org

Website of the Depression and Bipolar Support Alliance
www.DBSAlliance.org

Website of the International Foundation for Research and Education on Depression (iFred)
www.depression.org

Visudyne is a treatment to help slow the loss of vision in persons with predominantly classic wet AMD.

Important Safety Information

Visudyne therapy is not for everyone. People who have an abnormal sensitivity to light (a condition called porphyria) and those with allergies to any of the ingredients should not receive Visudyne. (Your doctor has a list of ingredients in Visudyne.) Check with your doctor or healthcare professional to see if you might be allergic to any component of Visudyne therapy. Only your doctor can determine if Visudyne is right for you.

Changes in vision, including blurring, decreased sharpness in vision, and gaps in vision are some of the most commonly reported side effects. Between 1% and 5% of patients experienced a substantial decrease in vision in the first 7 days after treatment, though some patients achieved partial recovery. Patients who experience substantial vision loss should consult their healthcare professional immediately. Injection site reactions and temporary back pain during injection were some of the most commonly reported side effects.

Patients should avoid direct sunlight or bright indoor light for 5 days following therapy with Visudyne.

Patients who have to go outdoors in daylight after treatment must protect all parts of their skin and eyes by wearing protective clothing and dark glasses. Ultraviolet (UV) sunscreens are not effective in protecting against photosensitivity reactions.

Please see full Prescribing Information.