THE SOCIAL BURDENS OF AMD

Economic Costs to Society - Because the majority of people with AMD are past retirement age, the disease’s effects on lost earnings and decreased productivity are mitigated.47 Nonetheless, societal costs associated with AMD – including the direct, tangible costs of screening, treatment and, to a lesser degree, rehabilitation – can total an estimated minimum of $7,150 per person each year.44

— Incremental costs related to vision loss can include additional professional and caretaking services resulting from dependency, falls and injuries and treatment for depression related to vision loss.

Costs to the Individual - Research has shown that the costs of medical resources, including the expenses for transportation and non-medical devices, rise significantly with decreased visual acuity.45

— Direct costs of living with the disorder, include visual aids, additional services due to increased functional deficits and additional medications, for example, for the treatment of depression.46

— Indirect costs include the value of caretaking by family members or other non-professionals and travel to receive treatment.47

Psychosocial Effects - Financial costs make up only part of the picture of AMD’s impact. The psychological, emotional and social consequences of the disease affect not only people who have AMD, but also their family and friends.48

— Overall vision loss caused by macular degeneration can affect the individual’s quality of life in varying ways and degrees. Variable factors include the pattern and extent of vision loss, the emotional response to the loss and the accessibility of vision rehabilitation and support services.49

— With the irreversible loss of central vision, individuals lose the ability to recognize faces and to drive.50 Reading, writing and other such activities of daily living become a challenge and require special adaptations, devices and training to perform.

— Approximately 20 percent of individuals with vision loss experience the phantom formed images of Charles Bonnet Syndrome. These are clear, realistic images of people or animals or flowers that they know are not there, but that appear to be superimposed on the real world. These are not hallucinations, as the viewer is well aware that they are not real; nevertheless many people do not tell others of this experience for fear of what they may think, thus compounding the isolation of their vision loss.

— Individuals with visual impairment are at risk for significant emotional distress and depression.51

—   In a survey of people with visual impairment, one-third of the respondents had clinically significant symptoms of depression.52

—   Visual impairment among adults is associated with social isolation, low self-esteem and life satisfaction, depression and a higher risk of suicide.53

—  Family members and caregivers, as well as patients, are likely to feel emotions ranging from guilt to fear, frustration and anger.54 Family dynamics, daily responsibilities and relationships can change, and all members of the family may be called upon to adapt.55