Vision Loss and Depression

On Tuesday, September 29, 2015, the National Eye Institute (NEI) hosted a Twitter chat on vision loss and depression. Here are some highlights of that discussion, along with some great resources to learn more about dealing with vision loss and depression.
vision loss and depression

  • Many studies show that people with vision loss or low vision are at risk for depression, although not everyone with vision loss gets depressed.
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  • A person with low vision is defined as someone who finds it difficult to do daily tasks even with regular glasses, contacts, medications or surgery.
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  • The number of Americans with low vision will increase over 70% by 2030. Broken down by ethnicity, African Americans with low vision will increase 93% and Hispanics with low vision will increase 190% during the same period. This is due to the rapidly aging Boomer population. 88% of Americans with low vision are age 65 and older.
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  • Symptoms of depression include persistent feelings of sadness, anxiety, irritability and fatigue. It is a common and serious illness that interferes with daily life. Each year, about 6.7% of American adults experience major depressive disorder. Women and men experience depression differently, with women 70% more likely to experience depression than men.
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  • People 65 and older are at particular risk for developing serious depression related to vision loss and yet it is often underdiagnosed and undertreated. Older adults may have other, less obvious symptoms of depression or they may not be willing to talk about their feelings. Many overlooked because sadness is not their main symptom. It is important to remember that while depression is a common problem among older adults, it is not a normal part of aging.
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  • An estimated 29-58% of those who suffer significant vision loss have major depressive disorder one year later. People with vision loss are 2x more likely to be depressed than someone without vision loss. Depression can be very disabling and may reduce the effectiveness of low vision rehabilitation interventions.
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  • A recent study confirmed age-related macular degeneration (AMD) is a big contributor to depression risk, as it accounts for about 45% of low vision cases.
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  • Older adults w/ vision loss are also 3X more likely to report difficulty in 1) walking, 2) managing medications, and 3) preparing meals. In fact about 39% of people with severe vision loss experience activities of daily living ADL limitations, compared to 7% of those with better vision. ADLs include eating, bathing, dressing, toileting, walking and continence.
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  • A link between depression and vision loss was also found in people as young as 20 according to a recent study. It looked at over 10,000 adults in the US and found they were approximately 2x more likely to be depressed.
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  • A decline in vision can also be associated with lower emotional, physical, and social functioning. To help those with low vision avoid depression it is important that they remain active and engaged in the world around them. And while people may become depressed because of vision loss, other causes of depression may also be present.
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  • An integrated approach to depression management in older adults with impaired vision may be the best course of action. Behavioral activation helps people recognize that loss of the activities they enjoyed that have led to depression and encourages them to find ways to re-engage with these activities. After 4 months, behavioral activation reduced the risk of depression by 50% compared to the control group. Behavioral activation can be used alone, or as part of psychotherapy called cognitive-behavioral therapy (CBT).
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  • Cognitive behavioral therapy (CBT) helps people with depression restructure negative thought patterns and to correct distorted thinking that is often part of depression. But it is important to remember that the best approach to treating depression is to personalize it for each individual.
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  • Often, the combination of pharmacotherapy and psychotherapy is a very effective option for depression treatment. Other time-limited psychotherapies, including interpersonal therapy (IPT) are effective in treating depression in people of all ages.
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  • Collaboration between eye care and mental health professionals can help people with vision loss improve their quality of life.

Resources
Understanding depression

How to live with low vision

Living with Low vision – How you can help webinar

Update on depression and AMD

Association of vison loss and depression in those over 20

Sadness impairs color perception

Rehab helps prevent depression from age-related vision loss

10/6/15

Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Listen Up: Free Low-Vision Audio Recordings

Three million people in the U.S. age 40 and older have low vision. According to 2010 research by the National Eye Institute, the number of Americans with low vision will continue to grow dramatically, from 2.9 million in 2010, to 5 million in 2030, to 8.9 million in 2050, as our population ages. In response, The Hadley School for the Blind, the largest provider of distance education for people who are blind or visually impaired worldwide, has launched a series of 10 free audio recordings designed to help those living with low vision maintain their independence. Available through the new Low Vision Focus @ Hadley program the recordings share practical ways to address daily living skills made difficult by vision loss.

Low-Vision Audio Recordings

The recordings are available on CD, NLS (National Library Service) cartridge and as free mp3 audio downloads from the Low Vision Focus @ Hadley (LVF) website at www.lowvisionfocus.org. Individuals are required to register online to receive access to the free audio recordings or they should call 1-855-830-5355 for the CDs or NLS cartridges. low vision audio recordingsEach recording is approximately 30 minutes long and covers a different aspect of living independently with low vision. This series helps people move forward using step-by-step tips and techniques, along with information and resources to help maximize the vision they have.

Following are the 10 audio lesson topics and a sample tip from each:

  1. Making the Kitchen User Friendly
    It’s a good idea to have two different cutting boards – a light colored one and another that’s darker. This will allow you to choose a background color that contrasts with the color of the food you’re working with. So, slice white onion or mozzarella cheese on the dark surface, and carrots or green peppers on the light colored board.
  2. Low Vision Cooking
    When putting a pan on a burner, make it a habit to move the panhandle over the counter. It’s also a good idea to point it in a consistent direction.
  3. Doing Simple Kitchen Tasks
    When you’re cooking with spices, don’t add spices by shaking them over the mixed ingredients, because once you add too much, they can’t be removed. Instead, shake spices into your palm and pinch the amount that you want. You can always add more.
  4. Basic Tactile Marking
    When marking a microwave keypad with tactile dots, put one dot on each number – but add an extra dot on the number five. Since the five button is in the middle, the double dot will let you identify it, so you can use it to figure out where the other numbers are around it.
  5. Simple Home Modifications
    The direction that the light is coming from is just as important as the source. A lamp with a gooseneck or an adjustable swing arm will help you to position it right where you need the light. Remember, whatever you use, make sure it’s completely shaded, so no light is directed in your eyes making it difficult to see the object.
  6. Getting Around the House
    Every place in your home where sound can be heard is a great landmark for the room. Constant sounds like a ticking clock are a great way to tell where you are. Other less dependable sounds like the traffic on the street can tell you where the windows are, your neighbor’s television can let you know where the living room is, and the intermittent motor hum of your refrigerator can always point you towards your kitchen.
  7. Looking Your Best
    To mark your shampoo and conditioner, think about it this way: when you’re washing your hair, you use the shampoo first, and the conditioner second. To mark them, just put one rubber band around the shampoo, and then two rubber bands around the conditioner. It’s a simple concept – the container used first gets one mark, and the second gets two.
  8. Keeping Prescriptions in Order
    Open your pill bottles over a tray or baking sheet lined with dark colored felt. If you drop a pill, it won’t bounce on the floor and it will be easier to see.
  9. Going Out for a Meal
    When reaching for glassware, approach the glass from above, bringing your hand down to the rim, and then to the bottom to pick it up. Putting it down in a consistent place on the table will help you find it more easily.
  10. Going Out with a Friend
    A sighted guide is someone who has enough vision to help you get from one place to another safely. You will hold onto their upper arm with your hand so both of you maintain physical contact as you walk. When you’re approaching obstacles or changes in your path like doorways, stairs, or sidewalk curbs, it’s the sighted guide’s job to give you verbal and physical information to keep you aware of the surroundings.

While the LVF is geared toward older adults, the program is open to any individual who is experiencing sight loss or caring for someone who may be losing his or her vision. Adult children of seniors living with low vision are encouraged to take advantage of the online resources to assist their parents. Caregivers and professionals, especially those working with low vision support groups in local communities, are also encouraged to utilize the resources available through the LVF website.

In addition to downloadable recordings, the Web site offers links to free low vision webinars, Hadley distance education courses that are relevant to those with low vision, tips and resource lists. In the future, Hadley will provide free, “quick tip” videos through the Web site that complement the audio recordings as well as new monthly webinars.

“We are so excited to offer Low Vision Focus @ Hadley and enable this growing population to retain their independence and live with confidence,” says VP of Education and Training and head of Low Vision Focus @ Hadley, Doug Anzlovar.

For more information or questions, call 855-830-5355 or email lowvisionfocus@hadley.edu.

9/22/15


Sheryl BassSheryl Bass, MA, MSW
The Hadley School for the Blind

Vision Rehabilitation Services

The term “vision rehabilitation” covers a wide range of services that can help you learn how to remain active with vision loss while maintaining your independence and quality of life.
sorting meds - vision rehabilitation

Vision Rehabilitation Services

The following are different vision rehabilitation services you can access in addition to the information and help you will receive from your ophthalmologist or optometrist.

  • Communication skills: These help you with reading, writing and assistive computer technology. In some cases you may even want to learn braille.
  • Counseling: This can be beneficial, not only to you, but and family and/or friends that want to better understand or help you with your vision loss.
  • Independent living skills: These skills can be a simple as learning how to cook safely, take care of your personal appearance, manage your finances, keep exercising, or enjoy hobbies. The people that come to your home to help you keep your independent may also suggest home modifications to make life easier and help ensure your safety.
  • Independent movement and travel skills: These skills are important not only to help with your independence, but also to keep you from isolating yourself. Isolation is a common problem with vision loss as you may not want people to know you are losing your vision, or you are afraid of falling or embarrassing yourself. However, isolation can lead to depression.
  • Low vision evaluations and training: There are a variety of hand-held and desktop magnifiers, special reading glasses, lighting sources and other devices that help you make the most of your remaining vision.
  • Vocational rehabilitation: Loss of vision does not necessarily mean you can no longer work. Vocational evaluation and training, along with job modification and restructuring, can keep you enjoying the work you have enjoyed and depend on.


laptop help - vision rehabilitation

Vision Rehabilitation Service Providers

When looking for vision rehabilitation services, what should you know? You are best looking for a specially trained person including low vision therapists, vision rehabilitation therapists, and orientation and mobility specialists. They each have completed a standardized certification process that will let them help guide you as you work toward your vision goals.

  • Certified Low Vision Therapists (CLVTs): These therapists work with you to use your remaining vision with various devices and assistive technology. They also help you determine what modification you might need at home or work to remain independent and safe.
  • Certified Vision Rehabilitation Therapists (CVRTs): These therapists teach special adaptive skills that will allow you to confidently carry out a range of daily activities.
  • Certified Orientation and Mobility Specialists (COMS or O&Ms): These specialists teach skills that help you navigate safely and confidently when you are home, in the community or traveling far from home. This can include the use of a cane, GPS devices or public transportation. They also include guide dog instructors, but this training is more intense and takes place at a guide dog facility for several days.

To remain active and independent may require learning new skills, but it is important to find the right person to help you learn those skills. By finding the best person to suit your needs, the process can be a fun and positive experience.

9/17/15

Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Using Andragogy to Help People with AMD

Adults and children do not learn in the same way. The concept of “andragogy” was widely introduced to the world of educational theory by Malcolm Knowles, PhD, in the latter part of the 20th century. He contrasted “pedagogy,” which is generally used to describe the method or practice of teaching — and comes from the Greek for “child learning” — with the practice of “andragogy,” which applies specifically to adult learning. While Knowles did not invent the term, he advanced the argument that andragogy should be very different from pedagogy.
Andragogy to Help People with AMD
Maureen Duffy, CVRT, LVT, an editor for Journal of Visual Impairment & Blindness, a writer and blog editor for VisionAware, and author of Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss, relies heavily on andragogy in her work with vision-impaired adults. Loved ones — especially adult children of older people — have a tendency to push care and “help” on grown-ups as if they were children, she says. Not surprisingly, this method seldom works.

Using Andragogy to Help People with AMD

From her work as a certified vision-rehabilitation therapist (CVRT) and low-vision therapist (LVT), Duffy calls out three concepts of andragogy to keep in mind when trying to help an adult who is coping with vision loss:

1. Adults have life experience.
Children don’t have a lot of life experience. And while adults have an incredible amount of life experience, we don’t always treat them as if they do. They already know how to problem-solve. If they have been cooking for their entire lives, they don’t need to learn to learn how to cook all over again; they just need to make adaptations.

“We treat adults as if they have to forget everything they’ve learned, and try to teach them something new,” Duffy says. “That doesn’t usually work. I say, ‘Show me how you’ve always done this. There’s probably just a little adaptation you need to make, and you can keep doing things the way you’ve always done them.’ You can’t just go in, and tell someone you’re going to change everything they do. Just figure out an adaptation.”

2. Adults are reactive learners.
Children are ready to learn when they are told they are ready to learn: We send them to school, and they know it’s time to learn. Adults are ready to learn when they decide they need to know or do something to improve their daily lives — not before. You cannot make an adult learn until they are ready to learn. That’s a big difference.

“Adults tend not to say, ‘I’m going to learn this now because I might need it later.’ They say, ‘I have this problem right now; I need to learn this thing right now,’” Duffy says. “It’s common for family members to tell a person with macular degeneration, ‘You need to learn braille in preparation for when you go blind in the future.’ That’s not true. They can read larger and larger print for as long as they are able to do so. It creates additional anxiety to tell an adult they have to start now to prepare for when they can’t see. You can’t prepare for that. It’s a process, and you make changes as you go.”

Andragogy to Help People with AMD
3. Adults are self-directed.
Adults want to be independent and determine, for themselves, what it is they need to learn. And that won’t necessarily match what family members think or want.

“Adults will decide what they want to learn, usually based on a hierarchy of needs and what they really need to know now,” Duffy says. “That hierarchy starts with survival needs: making food, getting food, reading medications, etc. And the only way to know what an adult wants and needs to learn is to ask them.”

At the heart of andragogy, it seems, is respect for the fact that an adult is an adult — and should be treated as such. “Andragogy is more focused on teaching problem-solving skills, which can be used over and over again by the adult in a variety of situations,” Duffy says.

Another difference between the way children and adults learn is the need for adults to maintain a sense of autonomy, points out Judi Delgado, director of the Macular Degeneration Partnership (MDP). “People with AMD may need to adjust the way they do some things, but they can still do them,” she says. “It doesn’t help them if others try to take over or do things for them. It’s important to understand that the person is already losing so much; if loved ones try to take over their lives, it just adds to the loss of independence.”

9/10/15

 

Maureen Duffy, CVRTMaureen A. Duffy, CVRT, LVT
Social Media Specialist, visionaware.org
Associate Editor, Journal of Visual Impairment & Blindness
Adjunct Faculty, Salus University/College of Education and Rehabilitation

3 Tips for Caregivers Helping People With Low Vision

Receiving a diagnosis of age-related macular degeneration (AMD), diabetic retinopathy or glaucoma can be a shock. Loved ones naturally want to help, but they don’t always know what to do or how to do it. Here are 3 tips for caregivers helping people with low vision.

We asked vision-rehabilitation expert Maureen Duffy, CVRT, for advice. She suggests turning to local low-vision agencies, trained low-vision professionals and online resources, such as the Macular Degeneration Partnership and the VisionAware services guide. Perhaps most importantly, she says, look for a support group.
3 tips for caregivers
“I have found that most adults with whom I’ve worked turn to their peers, and they get the most guidance and help in vision-loss support groups,” says Duffy, an editor for Journal of Visual Impairment & Blindness, a writer and blog editor for VisionAware, and author of Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss.

Duffy shared the three most important things to ask a loved one after they find out they have AMD:

1. What do you understand about what the doctor said and about what’s going on with your vision? What don’t you understand? What do we need to clear up?
If they don’t understand completely, ask if you can go to doctor with them to be a note-taker and information-gatherer. Ask the doctor for explanations. Be clear and concrete about the information you need — and ask the doctor for next steps.

The Macular Degeneration Partnership website has a downloadable list of questions to take along, as well as suggestions on how to be an advocate during a visit to the doctor on its “Be an Advocate” page.

2. What is the one thing you are most afraid of RIGHT NOW?
At first, their biggest fear is of going totally blind: “I won’t be able to do anything; I’ll be all alone; I’ll be totally helpless.” With AMD, they won’t go totally blind, and they can learn to make the most of their peripheral vision. There are services that can help, but it’s tough in the beginning: Go slowly.

Vision-rehabilitation services can help teach them to function safely and independently in critical day-today activities, such as:

• Independent movement and travel:

  • getting around indoors
  • walking with a guide
  • using a long white cane
  • crossing streets
  • using public transportation
  • using electronic travel devices

• Independent living and personal management:

  • preparing meals
  • managing money
  • labeling medications
  • making home repairs
  • enjoying crafts and hobbies
  • shopping

• Communication and technology:

  • telling time with an adapted clock or watch
  • signing their name
  • using tablets and smartphones
  • using computers with speech or screen magnification
  • learning braille

3. What is the ONE thing you are most afraid you can’t do?
Don’t start talking about everything that may need to go on; it’s just too much and is overwhelming. Start with the one thing. “I can’t aim for the toilet”; “I can’t keep food on the fork”; “I can’t make my coffee in the morning.” Help them find solutions for simple things. Figure out alternatives. That little bit of accomplishment encourages self-analysis.

“Many people have difficulty telling currency bills apart,” Duffy says. She shares a simple, effective way to do this by folding each bill differently:

  • Keep the $1 bill flat and unfolded.
  • Fold the $5 bill in half crosswise (with the short ends together).
  • Fold the $10 bill in half lengthwise (with the long sides together).
  • Fold the $20 bill like a $10 bill lengthwise, and then in half again crosswise, like the $5 bill.

It’s important to remember that no matter how much you may want to help, your loved one may not be ready to accept assistance. Pushing too much too soon isn’t helpful. Once you ascertain that your loved one is ready to be receptive, offer your help gently, slowly and with empathy.

9/8/15


Maureen Duffy, CVRTMaureen A. Duffy, CVRT
Social Media Specialist, visionaware.org
Associate Editor, Journal of Visual Impairment & Blindness
Adjunct Faculty, Salus University/College of Education and Rehabilitation

Print and Web Design for Older Adults

How to Design for Older Adults

Reading the small print can be very challenging as you age. Your eyes lose their elasticity due to a hardening of the lens inside your eye. This condition is called presbyopia and begins to affect many people after the age of 40, continuing to advance as you age. Readers glasses or a single prescription is no longer the best solution. You may find that you need one pair of eyeglasses for reading a book that you hold in your lap, while a different strength may be needed to use a computer at your desk, because it is further away. But it is not just the font size that can affect how easily you can read. Font shape, spacing and color all contribute to readability. Here are some helpful hints if you are producing printed materials for people over 40.
design for older adults
Print Size
Ideal size will vary depending on the font you choose as not all fonts are the same size. A 14 point type size in New Times Roman is smaller than a 14 point Verdana font. Therefore smaller fonts should not be less than 14 points and you may find they are easier to read at 16 points.

Font Type
Decorative fonts are difficult to read and should be used sparingly. For the body of text stick to a regular font that is bolder, with thick lines that are more legible.

Some people prefer a serif font, such as Times New Roman, as they say it is easier to read because of the “tails” at the end of the letters that create an illusionary line, helping to guide the eye along the line. However, others prefer a sans serif font, such as Ariel. It can be easier to read because of the simplicity of the lines. It is a personal choice.

Regardless of the font you select, use both upper and lower case letters in your body text. All capitals letters can be difficult to read. Save them for headlines or to emphasize a word or two.

Avoid using italicized text as the letters appear squeezed together, increasing the reading difficulty.

Presentation Style
Allow for white space as it provides natural places for the eyes to relax and can help you focus on what you are reading.

Align text to the left, as it is easier to read. And don’t wrap text around graphics.

Keep normal spacing between letters, neither expanding nor condensing them which make it more difficult to read the words. Space lines of text at 1.5 instead of single space, to make the lines of text much easier to follow.

Contrast & Color
As you get older, yellow, blue and green become increasing difficult to differentiate from each other if they are used in close proximity to each other, especially if you have cataracts. Yellow can almost disappear.

To make it easier for reading, stick with very dark type on a white background. Avoid patterned backgrounds.

Avoid using very glossy paper as it creates glare that can make reading hard. Also make sure your paper is thick enough so print form the other side of the page cannot be seen.
design for older adults
Websites & Blogs
Most of the rules listed above for printed materials also apply to websites and blogs (expect the glossy paper rule). But here are a few additional suggestions for online communications.

Use design templates that are one column (or one and a sidebar) to make it easier read. This is especially true for viewing on mobile devices, even if your web design is mobile responsive.

Allow enough space around clickable items, such as word links and buttons, so they are easy to target and click separately. Make sure the linked text is clearly defined with a color that is easy to differentiate for the surrounding text. Bright royal blue is the most common color used.

Provide a space between paragraphs.

Online a sans serif font is much easier to read, but keep the size at 12 -14 points. Ariel is common font, but Tahoma and Verdana are often used and were specifically designed for online usage. Verdana is a naturally large font, so a 12 point can work well.

Offer a feature where you can easily change the size of the font directly from the screen. An example is the Discovery Eye Foundation site where the control is located at the top right of the page. You can even offer on-screen contrast settings like on the Macular Degeneration Partnership page, at the top center of the page.

Avoid layering shades of the same color, such as dark blue type on a light blue background. Also avoid layering colors that clash such as red type in a purple block. These make reading the text more difficult.

These are just a few of the ways to make text easier to read, both in print and online. Do you have any other tips to share below in the comments?

7/28/15


Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Eye Issues For Every Age Recap

Vision is something we take for granted, but when we start to have trouble seeing it is easy to panic. This blog has covered a variety of eye issues for every age, from children through older adults. Here are a few articles from leading doctors and specialists that you may have missed and might be of interest.
Artistic eye 6
Bill Takeshita, OD, FAAO – Visual Aids and Techniques When Traveling

Michelle Moore, CHHC – The Best Nutrition for Older Adults

Arthur B. Epstein, OD, FAAO – Understanding and Treating Corneal Scratches and Abrasions

The National Eye Health Education Program (NEHEP) – Low Vision Awareness
Maintaining Healthy Vision

Sandra Young, OD – GMO and the Nutritional Content of Food

S. Barry Eiden, OD, FAAO – Selecting Your Best Vision Correction Options

Suber S. Huang, MD, MBA – It’s All About ME – What to Know About Macular Edema

Jun Lin, MD, PhD and James Tsai, MD, MBA – The Optic Nerve And Its Visual Link To The Brain

Ronald N. Gaster, MD FACS – Do You Have a Pterygium?

Anthony B. Nesburn, MD, FACS – Three Generations of Saving Vision

Chantal Boisvert, OD, MD – Vision and Special Needs Children

Judith Delgado – Driving and Age-Related Macular Degeneration

David L. Kading OD, FAAO and Charissa Young – Itchy Eyes? It Must Be Allergy Season

Lauren Hauptman – Traveling With Low Or No Vision  /  Must Love Dogs, Traveling with Guide Dogs  /  Coping With Retinitis Pigmentosa

Kate Steit – Living Well With Low Vision Online Courses

Bezalel Schendowich, OD – What Are Scleral Contact Lenses?

In addition here are few other topics you might find of interest, including some infographics and delicious recipes.

Pupils Respond to More Than Light

Watery, Red, Itchy Eyes

10 Tips for Healthy Eyes (infographic)

The Need For Medical Research Funding

Protective Eyewear for Home, Garden & Sports

7 Spring Fruits and Vegetables (with some great recipes)

6 Ways Women Can Stop Vision Loss

6 Signs of Eye Disease (infographic)

Do I Need Vision Insurance?

How to Help a Blind or Visually Impaired Person with Mobility

Your Comprehensive Eye Exam (infographic)

Famous People with Vision Loss – Part I

Famous People with Vision Loss – Part II

Development of Eyeglasses Timeline (infographic)

What eye topics do you want to learn about? Please let us know in the comments section below.

7/21/15


Susan DeRemerSusan DeRemer, CFRE
Vice President of Development
Discovery Eye Foundation

Are You Seeing Images That Aren’t There?

“I’m worried about my mother”, Janet said. “Lately, she’s been telling me that she sees things that aren’t there – bugs, flowers, faces floating in the air! Is she getting Alzheimers?! She’s healthy and has always been sharp as a tack, although she has macular degeneration. What should I do? Yesterday, she said some children were playing in her yard but there was no one there!”

Janet’s mom probably has Charles Bonnet Syndrome (CBS) which can affect anyone with a severe vision loss. People with CBS see things that are not there but they know they are not real.
charles bonnet syndrome images
They have reported a wide variety of images, including bugs, flowers, animals, people, trees, houses, balloons and patterns. In Dr. Lylas Mogk’s excellent book on macular degeneration, she describes a patient who saw monkeys wearing clothes, playing in the trees. Another person saw an entire dinner party in her dining room!

One study documented that 80% of the participants saw people; 38% saw animals. Children and groups of people were also common. Twenty-seven percent had them daily. For some people, the images lasted less than a minute, but for 53%, they continued for one minute to one hour.

The images come and go and are usually interesting or amusing and not threatening. Dr.Mogk states, “One of the most remarkable qualities of these figures is that they almost always wear pleasant expressions and often make eye contact with the viewer. Menacing behavior, grotesque shapes, and scenes of violent conflict are not, to my knowledge, a part of this syndrome.”

The same images usually repeat themselves – often at the same time of day. They may happen daily or infrequently. The person with CBS knows that they are not real, and is fully awake when they occur. In the study, 82% of people immediately knew that the images were not real. The rest were deceived only briefly and then because the images were such common objects.

The images don’t block out what is behind them and they don’t have any sound associated with them. They’re usually in color, but can be in black and white. They are very detailed – much more detailed than what the patient with macular degeneration can usually see. People may see anything and the images are usually not anything they’ve seen in real life; they don’t seem to be visual memories. We don’t know exactly why this happens; it may be that the brain is trying to show something in the absence of normal visual impulses.

Like “phantom limb syndrome”, the body experiences things that are not there. Between 10% and 21% of people with low vision experience CBS, but some studies put the number higher than 40%.

What To Do?

  • Letting your family or friends know about it can be helpful. Most people with CBS are afraid to say anything about it. “They’ll think I’m crazy!”, they say. But if you and they understand what’s going on, you can help each other deal with the issue. For instance, if you see a big spider on the wall, why not just tell someone, “I think I see a spider over there. Will you check for me?”.
  • Acknowledge the images and then move on with your day. One lady remarked that she just says, “Ok, I see you but I don’t have time for you now, so just go away.” Then, she finds it easier to ignore them. I mentioned this technique to another woman who laughingly said, “Oh, great. First I’m seeing things and now I’m going to talk to them? People really WILL think I’m crazy!”.
  • You do need to keep your sense of humor about this. You cannot MAKE them go away. Becoming angry or upset will not make the images any less strong or frequent. In fact, stress may be a factor in triggering a hallucination, as can fatigue, low light or bright light and inactivity.
  • Talk with your doctor about it. More and more eye doctors are learning about Charles Bonnet Syndrome. You’ll be reassured that what you are experiencing is shared by others. Although few people need it, there has been some research on the use of low dose drugs such as Haldol. Recognition and acceptance are often at least as effective.

On a positive note, patients do report that the hallucinations are reduced over time and eventually go away completely. At a recent support group meeting, one participant mentioned that hers had disappeared and wryly admitted that she missed them! She’d gotten used to them and they didn’t interfere with her daily life after a while.

Techniques

A research study in the Netherlands found that people used a variety of techniques that were helpful, in addition to the ideas above.

  • Close your eyes; open your eyes; blink or look quickly away from the image.
  • Walk away from the image or approach it.
  • Stare at the image.
  • Put on a light.
  • Concentrate on something else; distract yourself.

Thousands of people live with Charles Bonnet Syndrome and manage quite well – you are not alone!

One note of importance: If the experience does not seem to meet the description of Charles Bonnet Syndrome, further testing may be necessary. Other medical conditions can trigger hallucinations, such as Parkinson’s. A full neurological work-up is indicated if the images are frightening, threatening or are accompanied by sounds or bizarre sensations.

This article is from the NEW Macular Degeneration Partnership website – AMD.org.  If you enjoyed it, please check out other articles related to age-related macular degeneration and sign-up for the monthly AMD E-Updates.

References:

  1. Mogk, Lylas G. and Marja Mogk: Macular Degeneration, The Complete Guide to Saving and Maximizing Your Sight. New York: Ballantine Books, 1999, 2003.
  2. Teunisse, Robert J et al. “Visual Hallucinations in Psychologically Normal People: Charles Bonnet Syndrome: CBS.” The Lancet, Vol 347, (March 1996): p794-97.

Judi Delgado - age-related macular degenerationJudith Delgado
Executive Director
Macular Degeneration Partnership
A Program of Discovery Eye Foundation

Driving With Vision Loss

Challenges Faced by Individuals Driving With Vision Loss

Overview
People of all ages often view driving as the key to independence. Individuals with vision loss are no exception. Three groups of people with vision loss who wish to acquire or maintain the privilege of driving include teenagers with a congenital or acquired visual impairment who have never driven, adults with the same who have never driven, and adults with an acquired visual impairment who have driven in the past but may lose their license because of their vision loss. driving with vision lossHowever, vision standards for driving vary from state to state, and this variation persists despite decades of research demonstrating that there is no absolute cutoff criteria in visual acuity or peripheral vision for safe versus unsafe driving. The fact that states have variable standards results in people with visual impairments not being able to be licensed in some states, including perhaps their own, while being able to be licensed in a neighboring state. Clearly, the ability of these individuals to safely operate a motor vehicle does not change when they cross a state line. Yet, to maintain at least some driving privileges, they may find themselves having to move to a different state.

It is well known that many older drivers modify their driving norms to help keep themselves and others safe. For example, many older drivers voluntarily reduce or stop driving at night, in hazardous weather conditions, or on super highways. By limiting their driving, older drivers, particularly those with visual impairments, are able to continue operating their automobiles safely and efficiently in spite of reduced vision. This is important, considering the vast majority of older adults live in the suburbs or in rural areas where automobiles are required for transportation.

Maximizing Visual Capabilities
It is important for all individuals, but particularly for drivers who are visually impaired, to make sure their spectacle correction is up-to-date. Contrast enhancement and glare control with filtering lenses can also be of great benefit. Most drivers have experienced driving into the glare of the sun, while looking through a dirty windshield. Although wearing sunglasses and keeping windshields clean is not mandatory, they certainly help drivers see more easily and feel more comfortable when driving.

Maximizing Visual Attention
Human factors research has found that inattention blindness and the cost of switching contribute to or directly cause automobile mishaps. Inattention blindness refers to when a person’s attention to one activity undermines his or her attention to other activities. For example, when drivers focus on directional signs, their attention is not on what is happening on the road in front of them. The cost of switching refers to the time it takes a person to switch attention between different activities. A common example that causes driving mishaps is when drivers text while driving. When people focus on texting while driving, their response to the traffic around them is delayed.

Useful Field of View testing research has shown that the time it takes a person to process visual information, especially the complicated visual environment experienced each time a person drives, increases with age. With this in mind, decreasing or eliminating the time it takes older drivers or drivers with visual impairments to look for and visually process signage should help them maintain their concentration on the road ahead and the traffic around them.

A simple way to reduce or eliminate the need to look for directional signage is with the use of a Global Positioning System (GPS) device that uses spoken directions. Older drivers and drivers with visual impairments in particular should consider using a GPS device with spoken directions so that they are freed from the distraction of looking for/at road signs and can keep their attention on the traffic around them.

Finally, with the technology, such as adaptive cruise control and lane alert warnings, currently available in cars, it is expected that all drivers will be safer behind the wheel.

Final Considerations
A good driver is someone who has the ability to perceive change in a rapidly changing environment; the mental ability to judge and react to this information quickly and appropriately; and the motor ability to execute these decisions, along with the compensatory skills to compensate for some loss of ability in the other areas. Additionally, a driver’s familiarity with the driving environment and his or her past driving record should be taken into account when considering limiting driving activities or retiring from driving altogether.

For many drivers with vision loss, a limited driver’s license that allows them to drive during daylight hours, within a restricted radius of their home, and at lower rates of speed may be all they desire. However, there are times when an individual will need to retire from driving altogether because of vision loss or a combination of vision and cognitive changes. When this time comes, the individual needs to understand that retiring from driving is for his or her safety and the safety of others.

Finally, it is well known that vision loss in general, as well as the loss of driving privileges, can lead to feelings of hopelessness and depression. Fortunately, there are many things that can enhance the functional abilities of individuals with vision loss. To learn about available resources for individuals with vision loss, visit the National Eye Health Education Program low vision program page at www.nei.nih.gov/nehep/programs/lowvision.

7/9/15

Dr. Wilkinson - driving with vision lossMark Wilkinson, OD
University of Iowa Carver College of Medicine
Chair of the National Eye Health Education Program Low Vision Subcommittee

Is There Life After Vision Loss?

Vision loss does not have to result in isolation and withdrawing from rewarding and enjoyable activities that life has to offer. Jim Vorndran, one of my long-time low vision patients who suffers from macular degeneration wrote: “The greatest obstacle is fear…fear of the unknown and of apparent helplessness. It is difficult to admit to myself and to others that I can no longer do the things I used to do with almost no effort. But once I have begun to embrace this, I am ready to begin to learn to walk once again. “

Is There Life After Vision Loss?

Jim wrote: “Vision loss can be a source of frustration but I also see it as an opportunity, and in some strange way as a gift. It has slowed me down so that I can pay greater attention to what is going on around me.”

living with vision loss
Susan F. was able to start reading magazines after simple reading glasses (stronger for low vision patients) and low vision therapy.

In my ten years of providing low vision care, many patients receive the devastating news of potentially progressive vision loss without being presented with resources or support, and families often do not know how to cope. Their determination to maintain or improve their quality of life is often a source of inspiration.

Macular degeneration is the primary cause of vision loss in the US, followed by diabetic retinopathy and glaucoma. There are steps to take in order to continue enjoying daily life and reduce the isolation that vision loss can bring.

Following is a list of six steps to follow in order to maintain quality of life and to be pro-active in finding ways to cope.

  1. Be informed about your eye condition
  2. Learn as much as possible about your eye condition. Ask your eye doctor what level of vision you have and where you see best in your field of view. Macular degeneration results in loss of central vision while the peripheral vision is still healthy. Glaucoma has the opposite effect. Ask about the prognosis of your condition, treatment options (both medical and rehabilitative),ways to slow down the progression, and current research and clinical trials in this field. Be proactive about how the progression of your condition is affecting your vision. Most eye doctors will have written materials and you can read these on your own, or ask a spouse or family member to read it to you. This will help them to understand your condition as well.

  3. Schedule a low vision evaluation
  4. Many of my patients and their families had never heard about low vision care. Low vision is defined as “vision which is insufficient to do what you want to do”. Most will mention that their glasses are not

    living with vision loss
    Anibal was a vision therapy patient who was able to start walking without a cane after O & M training. Feels more independent. Yellow contrast glasses help.
    working anymore. Vision loss reduces or eliminates the ability to do normal activities of daily living like reading, watching TV, recognizing faces, or driving. Ask your specialist for a referral to a low vision doctor who can help. A low vision specialist can enhance your remaining vision by recommending special glasses, proper lighting, and also low vision therapy to maximize the remaining vision you have. They can help establish a treatment plan taking into account your insurance and other factors.

  5. Establish a “Wish List”
  6. Vision loss does not have to mean discontinuing everything you did before. It might just mean a different way of doing things. It is first important to write a list of things you would like to be able to do. The top three are usually: reading, driving, and watching TV. Other wish list items will include sewing, playing bridge, cooking, etc. Once you write this list, you can then track down the resources that will help you fulfill this.

    For example, while a handful of low vision patients may still be able to continue driving (to be determined by trained specialists), others will need transportation resources such as Access, talking devices, magnification devices or software, books on tape, etc.

  7. Low vision devices and vision rehabilitation
  8. Some of these devices and/or low vision therapy can help you fulfill your wish list. These include simple hand-held lighted magnifiers to more sophisticated assistive-technology devices such as a CCTV, and prescription telescopes. A low vision specialist can help determine if you are a candidate for low vision therapy, or if one of these devices would be appropriate and what your insurance would cover.

  9. Community resources and volunteering
  10. Support groups, such as the Macular Degeneration Partnership, can be a helpful resource to share and gain experiences from others who are coping with the same condition. One of my patients, Bonnie D., started a support group at her church, when she realized that several others also had AMD. It was successful, and they met once a month, learning from each other.

    Some people also find rewarding experiences in volunteering to help others. One patient goes to a nursing home via public transportation twice a month to sit with those who are bedridden and accompany them. She said it helps her to forget her own difficulties and to be more optimistic when she sees there are others who need more help.

  11. Incorporate technology resources
  12. As Jim V. writes “For me, a major challenge has been to overcome resistance to using electronic devices but now that I am freeing myself from that frustrating challenge, I am learning about many opportunities available.” Jim is now an avid iPad user since the font size can be easily increased and the user can switch to voice-over to read what is on the screen. He was able to receive technology training at a local center for the blind and partially sighted. He has discovered magnification software, apps for iPhone an iPad such as ZoomReader.

These are examples of how quality of life can continue even after vision loss. Life can still be enriching, engaging, and enterprising. It all depends on you.

List of Resources:

Braille Institute
Classes, training, on-site demonstrations of assistive-technology
www.brailleinstitute.org

Access Transportation Services
www.accessla.org

Computer Screen Readers
This is a free screen reader for the blind and visually impaired.
www.nvaccess.org

AI Squared
Computer software and other products that magnify and/or read the screen: Zoom Text, Zoom Reader for iPhones
www.aisquared.com

Support Group
Macular Degeneration Partnership
AMD.org

6/25/15

Dr. Limtiaco - living with vision lossLisa Limtiaco, OD
Dr. Richlin, OD & Associates
Beverly Hills, CA