Vision loss: It’s a Family Matter

husband and wife standing on beach. he has his arm around her.

by Sylvia Stinson-Perez, MSW., Director of Mississippi State University OIB-TAC

Vision Loss Impacts Everyone in a Person’s Life

Vision loss and learning to adjust to it not only impacts the individual with the visual impairment, it impacts everyone in their life in some way. There are implications for safety, daily independent living, medication management, transportation, and almost every aspect of life. Therefore, it is critical to acknowledge and include loved ones in the adjustment and rehabilitation process to ensure the development of good coping strategies and independent living.  

Look for Signs Your Loved One May Be Experiencing Vision Loss

Many eye conditions, such as macular degeneration, glaucoma, and diabetic retinopathy, cause varying degrees of visual impairment and may initially impact just a few areas of a person’s life. In fact, it can be very confusing because a person with one of these conditions may have no difficulty doing one task, while having extreme difficulty doing another. It is all about the type and severity of the eye condition. For example, a person with macular degeneration may not recognize a family member but be able to pick up a safety pin off of the floor. This is because the condition causes central vision impairment.  

central vision loss with macular degeneration. photo by National Eye Institute
Central Vision Loss Caused by Macular Degeneration

Estimates of individuals with visual impairments range from 4 to 12 million in the United States. Approximately 20 percent of those over 60 have a visual impairment. However, it is important to note that although the eye ages along with the body and some vision changes occur, visual impairment is not a normal part of aging. Some common signs that might indicate your loved one needs to see an ophthalmologist include the frequent inability to find common items like the TV remote, telephone or other items that might just get laid around; bumping into people or things; spilling liquids when pouring or knocking cups over; difficulty or inability to read or see photos clearly; and difficulty recognizing people they know. These might be attributed to other age-related issues or diseases; however, it is important to rule out vision impairment as the cause. Most eye diseases are progressive, and vision continues to deteriorate, thus impacting functioning even more. Early diagnosis can increase access to treatment that prolongs vision and can help an individual develop important coping strategies and resources. 

Impact on Everyday Functioning

Once you have a diagnosed eye disease or condition, together you can work to understand how the condition will impact independence and safety. Help is available and a person with a visual impairment, even one with total blindness, can learn adaptive techniques to live alone, cook, keep their home clean, use a computer and phone, travel independently, and work. Check out the APH Connect Center for resources or visit www.OIB-TAC.org to find services specific to older individuals with visual impairments.    

Understand the Emotional Impact

The diagnosis and experience of vision loss is a major loss in life and most individuals go through a process of grieving their vision loss and all that is associated with that loss. However, loved ones need to also be aware of the loss that they feel as well due to the diagnosis.  

No one wants to feel like they are a “burden” on their loved ones. Most people want to be independent, self-sufficient and productive… even in their later years. Having to rely on, ask for help, or even feel dependent on family to assist with tasks one has done on their own for years can be embarrassing, frustrating, and depressing. The loved one who feels forced to “take care of” their loved one with a visual impairment is likely to feel some of these same feelings. Discussing these feelings and finding ways to adjust to the new situation and find new ways to cope is essential for the process of adjusting to and living well with vision loss. Vision rehabilitation services can make all the difference in this dynamic.

Understand the Everyday Functional Implications

Vision impairments vary widely. Understanding what someone sees and what they cannot see and how that impacts their everyday functioning can be very helpful. The only way to really understand this is to ask. However, it is important to ask in a supportive way that demonstrates a true intention of understanding. Also, be aware that vision can vary from day to day, and sometimes minute to minute. It can be impacted by how one feels physically, how much rest they had, illnesses, and lighting conditions. And, yes, it can be very confusing. You might be surprised that your loved one can see one thing and not another. It is just as disturbing for them. The eye and visual system is a delicate system, and it is often difficult to understand vision and vision impairment. Therefore, just ask and accept what information is provided and work from there. Early on or as a person experiences additional vision loss, more assistance may be needed, but look for opportunities to step back and encourage independence and self-advocacy.  

Provide Appropriate Assistance 

Everyone’s inclination when they see someone they love struggling is to help. They want to make sure the person is safe above anything else. Sometimes this means creating an environment of dependence. More assistance is likely needed early on, but as an individual adjusts and learns techniques to effectively cope with and live with vision impairment, less help is needed and independence should be promoted. Identifying and building on areas in which one with a visual impairment is capable of completing a task safely and independently is vital to the adjustment and coping process to maintain independent living with vision loss; however, identification of areas where help and support is needed is equally as important. It is difficult to do many tasks with a visual impairment, especially if one does not have the training or equipment/technology that make it easier. Therefore, figuring out the areas where help is needed is as important as finding out where help is not needed. The loved one can support independence while also being aware that support in some areas will continue to be very appreciated and essential. and result in the person with vision loss regaining their independence and shifting the dynamic to interdependence.