Addressing The Trauma Of Sight Loss

Background

In order to satisfy the synthesis/capstone requirement for my undergraduate degree, I took a course that focused on psychological traumatology, the study of how traumatic or stressful events affect someone’s mind. For my final paper, I chose the topic of addressing the trauma of sight loss and how senior adults are more likely to experience issues related to their mental health than people who are younger when they are first diagnosed. In honor of Mental Health Awareness Month, here is my paper on adjusting to life after sight loss for people 65 and older, and tips for caregivers and other professionals.

Abstract

Global society is built on the ability to see, and having good eyesight is a prerequisite for being able to participate fully in society. Whether it is being able to recognize faces or nonverbal cues, being able to navigate a building or city using visual information such as signs, or even being able to do simple tasks such as plug a charger into an outlet to charge a phone, people rely a lot more on their sight than they think. However, as people get older, they may suddenly find that faces are more blurry, that signs are placed outside of their peripheral vision, or that the previously easy-to-find outlet blends into the wall- and the text on their phone has gotten much more difficult to read. Many people view living with low vision or other forms of vision loss as a death sentence, but there are many different things that can be done to help cope with the trauma of losing eyesight and mourning the loss of the sighted version of oneself, including talking about eye conditions and intersections with eye health and mental health, taking advantage of local resources, preserving favorite activities, and new innovations in the world of assistive technology that can help people live full and meaningful lives.

Introduction to Low Vision

Over 2.2 billion people worldwide have been identified as having some form of visual impairment, inclusive of blindness and low vision, that affects how they are able to see the world around them, with 1 billion cases being from preventable sources or that is yet to be addressed with medical intervention. Low vision is defined as a form of permanent visual impairment that cannot be corrected by glasses, contact lenses, or surgical interventions, and that interferes with the performance of normal everyday activities, with the four most common causes being age-related macular degeneration, cataracts, diabetic retinopathy, and glaucoma, though there is no reliable data about how many people are affected by these conditions. Because of this, it is difficult to count how many people truly have low vision due to discrepancies in how visual impairment is reported worldwide, however it is estimated that 80% of people identified as having low vision are over the age of 65 since aging is considered the primary risk factor for many types of eye conditions. Of this 80%, about 67% of this population identifies as female and 33% identifies as male, which means that women are more likely to be diagnosed with low vision.

There is a strong correlation between visual impairment, advancing age, and having an aging population, as the prevalence of visual impairment is expected to increase nationally, especially if the population growth is not associated with an increase in eye care services. In 2005, it was estimated that at least 14.5% of adults 65-74 years of age and 21.1% of adults 75+ have low vision. Even though people over 65 make up the largest subgroup of people with visual impairment, this population is frequently the most neglected when it comes to research on quality of life and low vision rehabilitation services. Developing low vision or other severe visual impairment is linked to low socialization rates and high mortality rates in elderly populations. It is also considered by many elderly people to be their most feared ailment, more so than cancer or other serious diseases because sight is considered the most important out of the five senses.

How Low Vision Intersects with Mental Health

Vision loss can bring about varying degrees of mental health issues even in otherwise psychologically healthy individuals, greater than any other sensory impairment and at any age. The severity of vision loss does not affect psychological wellbeing, rather it is the threat of functional loss and dependence, though psychopathological wellbeing is worse for those with partial sight loss and low vision, as they tend to have more of a depressed mood, anger, and hostility due to the fact they still have some residual vision. Depression occurs in 90% of cases for people with low vision and can last for years on end- one study showed that 50% of a senior population had continued depression four years after being diagnosed with low vision. Anxiety occurs in 70% of these cases as well, with other common symptoms including insomnia, lack of appetite, social withdrawal, loss of self-esteem, crying, and suicidal ideation. Hallucinations, suspiciousness, paranoia, and alcohol abuse are also common reactions to being diagnosed with low vision, though these symptoms occur in less than half of the population. Healthcare professionals sometimes view depression/anxiety reaction as being a positive thing and believe that having patients express feelings of fear, anger, and self-pity can have a cathartic effect, though patients still need to be monitored to determine if they are at risk of suicide.

Anxiety and fear leading to sight impairment is a known suicide cause for elderly populations, and people with a prognosis of progressive blindness are at a higher risk of suicide, as well as people with impending and current severe visual impairment who do not qualify for services for the blind. In one documented case, an 81-year-old patient committed suicide the day they were told the prognosis of their condition was blindness, as they believed in the myth that people with visual impairments are incompetent of doing things independently. By having ophthalmologists collaborate with mental health professionals to establish clear guidelines about how to best support people with low vision and ensuring that patients are informed about their conditions, this problem can be prevented.

How to Talk To People Who Have Recently Been Diagnosed With Low Vision

Many people who have been recently been diagnosed with low vision feel that people instantly treat them differently once they learn that they have trouble seeing things. Sighted people will treat people with low vision people like they need special care, and may offer assistance without being prompted, i.e grabbing onto the arm of a person with low vision to guide them without first getting their consent. Some service providers will infantilize people with low vision, especially those who are new to sight loss, and use overly simplified language when providing information or treat them like they are incapable of doing tasks such as reading or feeding themselves. Even significant others may label their partner as being incompetent or being unable to do certain tasks, which is more likely when they are influenced by assumptions about blindness.

There are several different things that people can do to help support others with low vision without making them feel like an inconvenience or like they are incapable of doing basic tasks. When approaching a person with low vision, people should identify themselves as well as their location, such as by greeting the person and then identifying themselves. Medical staff should make sure that they are within the patient’s field of vision when introducing themselves and explain any eye issues in plain language without using medical terms. It is also helpful to have information available in an accessible format that a person with low vision can read independently, such as large print or audio recordings.

Another common question from professionals is if words such as see, look, or view are offensive or sensitive terms to use around someone with low vision. While the common consensus is that these terms are not offensive and that people with low vision and blindness use these terms when talking to each other, people who have just recently been diagnosed with low vision may be sensitive to the use of these terms because they feel that they are being reminded of the fact they have recently lost their sight. However, terms such as saying an object is “right here” or that an object is “over there” are considered highly confusing and professionals should instead give specific location information, such as an object being ten feet to the left.

Use State/Local Resources

One of the worst things that medical professionals can do is inform a patient that they have low vision and then not give them any further information about how to live with the condition. It is better for doctors to share different types of resources for living with low vision after a patient is diagnosed, as they will be less likely to treat low vision as a death sentence. However, hospitals and healthcare symptoms often do not have services available in-house to help patients adjust to living with sight loss, so referring patients to low vision resources in their state or local community can have a beneficial effect. Utilizing low vision services has shown to help decrease depressive symptoms related to sight loss and can benefit over 90% of people with low vision. Examples of services that can be provided by state and local resources include low vision clinics, employment training, independent living training, and orientation and mobility services, all of which can help people with low vision lead more independent lives.

Providers can find information about state and local resources by reaching out to national organizations including Lighthouse For The Blind, Foundation Fighting Blindness, Royal National Institute For The Blind (UK), National Federation of the Blind, Royal Society For The Blind (Australia), American Council for the Blind, Canadian National Institute For The Blind (Canada), and government-funded blindness and vocational rehabilitation agencies.

Find Ways to Preserve Favorite Activities

Activities of daily living can become highly challenging if traditionally used visual cues suddenly disappear, i.e eating. The most common activities that people 65 years of age and older report missing the most include personal reading, watching TV, daily living activities, hobbies, and being able to move independently, though other studies list the two most common activities that people miss out on as being driving and reading. While it is impossible to make certain activities such as driving accessible for people with severe low vision, there are services in place that can help with preserving other favorite activities.

For personal reading, one of the most popular services for people with low vision is Bookshare, an online library that has over 800,000 titles that include popular titles as well as classic books, periodicals, and other printed content for people with print disabilities to access with their choice of technology. After submitting documentation that proves that a person has a visual impairment, they can download up to 50 books a month in their choice of format. A Bookshare membership is free for people enrolled in schools/colleges in the United States or for people who live in certain developing countries, and $50 for everyone ekse.

To address the barrier of watching TV, people can use a tool called audio description through their cable service or their choice of streaming service. Audio description is a secondary audio track that gives listeners nonvisual descriptions about visual information on the screen, such as who is on the screen or what they are doing. Many cable companies also support text-to-speech settings so that information can be read out loud about upcoming programs or other television controls. Outside of television, audio description is also used in other settings such as live theater, museums, theme parks, and other locations.

For people who have more mild forms of low vision, many states allow people to drive with custom glasses known as bioptics, which provide magnification and allow users to see where they are driving more clearly. The exact requirements for driving with bioptics vary, though users will need to pass a specialized driving test in order to get their license. Bioptics are only available by prescription from a low vision specialist.

Modify Home and Familiar Environments

For people with sight, experiences such as moving between objects, choosing a seat in a restaurant, and walking from one room to the next are simple tasks, as they do not have to think about the spatial relationships to these things. For people with low vision, physical environments can resemble obstacle courses or black holes as they try to remember layouts of places or where something is or try to recognize different objects. Some common problems for people with low vision, particularly glaucoma, include outdoor mobility, glare and lighting, household tasks, and personal care, all of which can affect how they move around their home and other familiar environments. This is because they lack visual clarity so it is hard to determine items as being a shadow or a hole, or have other issues such as double vision or stereo blindness that affects how people view the size or location of objects.

Spaces for people with low vision should be designed with their visual limitations in mind. For example, people may have trouble seeing ground activity such as pets, small children, or other objects on the ground, so walkways should be kept clear and animals should wear bells or other items that could give auditory cues for their location. People should know where to find items and what is in a particular area, and care should be taken to ensure that these items are always located in the same place and never moved without warning. Other helpful tools include large text or tactile labels on commonly used items, especially medication, as well as using bright high-contrast color schemes for furniture and decorations.

Introduce Assistive Technology

Assistive technology is defined as involving technologies, equipment, devices, services, systems, processes, accommodations, and environmental modifications that enable people with disabilities to overcome physical, social, infrastructural, and/or accessibility challenges so that they can lead active, productive and independent lives as equal members of society. Training people on how to use assistive technology has shown to help tremendously with independence and helping people feel more in control of their lives and daily activities. Some common examples of assistive technology that can be used by people with low vision include smartphone settings that provide large print and text-to-speech for independent communication, apps that give users details about products after they scan a barcode or label, and many other types of low tech and high tech devices. Some people may view those who use other more obvious aids such as a guide dog or blindness cane as being of worse vision than they are, so they may be more resistant to using these types of assistive technology, but these tools can be life-changing in terms of increasing mobility and being able to travel.

Taking Advantage of Support Groups

Patients are typically not able to absorb new information quickly and do not know what questions to ask when they are first diagnosed. In addition, they may have trouble connecting with others who are going through the same experiences they are, especially if they are in a non-urban area. Support groups can be a fantastic resource for people over 65 with low vision as it gives them the opportunity to connect with others who share the same experience and swap ideas. Since there is no difference from a psychological perspective between losing sight over months vs over years, there is no need to find a support group specifically for people affected by a certain eye condition, though people may enjoy being part of such groups if they are available.

Families and caregivers can also benefit from attending support groups of their own, as these types of groups can provide educational opportunities about challenges that their loved one may face from living with low vision, as well as help to address the most common reactions surrounding being diagnosed with low vision. The four most common reactions include denial, refusal, acceptance, and overprotection, with overprotection being the most common and most detrimental in the long run as it prevents people with low vision from being able to learn to do things for themselves whenever possible. Family members and caregivers can choose to attend these groups with their loved one, or find a specific group that targets the challenges they are facing and that provides information about how to overcome them while respecting the autonomy of the person with low vision.

Conclusion

When someone first enters the world of low vision, they often imagine people with visual impairments as being either victims who are unable to live a meaningful life or as heroes who are able to excel at multitasking or other tasks that seem impossible or difficult. However, as they get to know the world of low vision and all of the resources around them, they learn that few people wish to be victims that have no control over what they do, and few people wish to be heroes that make living with low vision seem to be an impossible task worthy of awe. Adjusting to life with low vision may seem difficult or impossible at first, but by embracing assistive technology and learning new ways to do favorite things, people with low vision won’t just survive despite having low vision- they will thrive while having it.

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