Sharing Solutions Fall 2006 A newsletter for People with Impaired Vision and Their Support Networks Living Better at Home As we go to press, we're happy to announce a 2007 Lighthouse initiative promoting safety, independence and accessibility in the home, as part of a "Living Better with Vision Loss" national campaign. Funded in part by an unrestricted educational grant from Genentech, we're creating materials with suggestions for home modifications, lighting, contrast enhancements and products. In addition, we're developing accessible online lessons that explain how to make meal preparation safer and easier. These will be featured, along with other helpful information, on Lighthouse Web sites www.lighthouse.org and www.visionconnection.org. Stay tuned! And we'd like to hear about your solutions for improving life at home, for our next "Coast to Coast" exchange (see page 6). In this issue, we look at two challenges faced by so many people who are visually impaired: • vision loss and depression, highlighting findings and practical advice from a Lighthouse research study • the decision to use a long cane, including first-hand experiences from our readers We also bring you information about a new nationwide study seeking participants with age-related macular degeneration (AMD) that will evaluate the effect of vitamins, minerals and fish oil on the progression of AMD. Finally, we would appreciate your responses to a brief survey (see page 7) so that we can continue to make Sharing Solutions relevant to you and your support networks. As always, thanks for sharing — and enjoy the newsletter! Carol J. Sussman-Skalka Newsletter Editor Depression, Vision Loss and Vision Rehabilitation By Joann P. Reinhardt, PhD; Amy Horowitz, DSW/PhD; and Carol J. Sussman-Skalka, LMSW, MBA If you're one of many older adults with vision loss who also experience depression, you're not alone. While depression is not an inevitable consequence of vision impairment, it is common. An estimated one-third of older adults with vision loss report clinically significant depressive symptoms.1 These may begin at the initial diagnosis of an eye disease, or they may appear many years later when vision problems worsen. In either case, depression can make the adjustment process more difficult. And it also can interfere with obtaining and benefiting from vision rehabilitation services designed to help people regain and maintain their lifestyle. In a recent Lighthouse five-year research study, which focused on those adjusting to age- related vision loss, we looked at the relationships among vision loss, depression and vision rehabilitation. In particular, the study examined the effect of depression on service use, and the impact of vision rehabilitation on functional ability and emotional well- being. What Is Depression? Depression can feel overwhelming but it should not be ignored, accepted or expected to go away on its own. It's a treatable medical condition. Know the signs and take them seriously. If you or someone you know experiences five or more of the symptoms listed below (including at least one of the first two) over at least a two-week period for most of the day, almost every day, seek help: depressed mood; loss of interest or pleasure in things usually enjoyed; decreased/increased appetite or weight gain or loss; sleep disturbances (trouble falling asleep, staying asleep, waking early, sleeping too much); feeling fidgety or restless; unable to sit still; fatigue or loss of energy; feelings of worthlessness or excessive/inappropriate guilt; diminished ability to think or indecisiveness; and thoughts of death or suicide. A medical or mental health professional can diagnose major depression and rule out other health issues. Also, people who experience at least two but less than five of the symptoms (including one of the first two) for two weeks or longer, are likely to have "minor depression," also known as subthreshold or subclinical depression. This is actually more common than major depression in both the general older adult population and among people with vision impairment. Subthreshold depression also can have a significant negative effect on functioning and life quality. Vision Loss and Depression In our sample of older adults seeking vision rehabilitation, the Lighthouse study showed that 7% had major depression and 27% had subthreshold depression.1 These rates are much higher when compared to older people in general. Whether a person with vision loss becomes depressed seems more related to the impact the vision loss has on a person's functioning rather than to the actual severity of vision loss. And that impact can be devastating, as illustrated by the following comments: • "At night when my husband's asleep, I'm very depressed and I cry." • "Nearly every day I'm sad. Can't let my wife know." • "... feel like everything is falling out the bottom of things. All I want to do is go to bed and sleep." • "I stopped driving to visit people. Now they must visit me. I stopped living … wish life would end." Our research showed that people who are most at risk for depression are those who report poorer overall health, less adequate help from their family and friends, decreased feelings of their own effectiveness, and a past history of depression. Impact of Depression on Service Use This study showed that adults with age-related vision loss who applied for vision rehabilitation services, and who also had a diagnosis of major depression, were 64% less likely than those without such a diagnosis to actually use any rehabilitation services. Also, looking only at those who did use some vision rehabilitation services, a major depression diagnosis predicted fewer hours of service. It appears that people with vision loss who also experience major depression may find it too difficult to take advantage of services. And it may be that people need to address depression first if rehabilitation is to be successful. One study participant who did not receive services commented, "I certainly don't want to talk about my eyesight or have anyone else talk about it either. It would be very depressing. Maybe I haven't reached that stage where I am that desperate."Unfortunately, not getting services is all too common. Yet, experience and research demonstrate that learning skills to compensate for vision loss can have a positive effect on one's emotional well-being and overall quality of life. Benefits of Vision Rehabilitation Lighthouse research has demonstrated the positive effects of vision rehabilitation services on the adjustment of people with age-related vision impairment.2 Most study participants received clinical low vision services, which involve the assessment of remaining vision and the prescription of optical devices by specially trained eye doctors. These devices help people maximize use of residual vision and include various types of magnifiers, telescopes and special sunwear. We found that people who used a greater number of these devices showed decreases in both their functional disability and depressive symptoms over a six-month period. The use of optical devices seems to have had a positive effect because they enabled people to continue to accomplish tasks visually. • "Prism glasses are very important to me. • use them to do my reading and my crossword puzzles. I have them enlarged from The New York Times. It does my heart good to be able to work the puzzles." • "My optical aids are very important to me. I cannot conduct my life without them." Other vision rehabilitation services include orientation & mobility training, vision rehabilitation therapy and counseling. Our study showed that people who used more hours of rehabilitation (across all service types) were better able to carry out everyday tasks. • "Do my reading during the day when I have the sunshine. I'll listen to radio and TV in the evening when it's harder to read. I try to plan things with other people more because of the difficulty of doing them alone." • "I still cook and bake in the kitchen. Write myself a shopping list with the black marker." These more positive outcomes were also associated with a decrease in depressive symptoms over time. What You Can Do If you or someone you know is feeling depressed or down, seek help from a medical or mental health professional. Don't ignore symptoms or expect them to go away on their own. Depression is a treatable medical condition. According to the National Institute of Mental Health, more than 80% of all people with depression can be successfully treated with medication, psychotherapy or a combination of both. And, if you or someone close to you feels overwhelmed by vision loss and its impact on life, check out vision rehabilitation services and support groups in your area by visiting www.visionconnection.org and clicking on Help Near You or calling (800) 829-0500. References 1 Horowitz, A., Reinhardt, J.P., & Kennedy, G. (2005). Major and subthreshold depression among older adults seeking vision rehabilitation services. American Journal of Geriatric Psychiatry, 13, 180-187. 2 Horowitz, A., Brennan, M., Reinhardt, J.P., & MacMillan, T. (2006). The impact of assistive device use on disability and depression among older adults with age-related vision impairments. Journal of Gerontology: Social Sciences, 61B (5), S274-S280. Joann P. Reinhardt, PhD, is the Associate Director of Research, The Jewish Home & Hospital Lifecare System; Amy Horowitz, DSW/PhD, is the Director of Research, The Jewish Home & Hospital Lifecare System; and Carol J. Sussman-Skalka, LMSW, MBA, is the Manager of Special Projects, Center for Education, Lighthouse International. Study Seeks Participants with AMD The National Institutes of Health recently announced a new nationwide study to examine the effects of a combination of vitamins, minerals and fish oil on the progression of age- related macular degeneration (AMD). This new study will build on the earlier Age- related Eye Disease Study (AREDS), which found that high-dose antioxidant vitamins and minerals (vitamins C and E, beta-carotene, zinc and copper) taken by mouth reduced the risk of progression to advanced AMD by 25%, and the risk of moderate vision loss by 19%. The new study, AREDS2, will add lutein and zeaxanthin, along with the omega-3 fatty acids DHA and EPA to the study formulation. Lutein and zeaxanthin are plant-derived yellow pigments found in the macula, while DHA and EPA come from fish and vegetable oils. Prior studies have suggested that these nutrients may protect vision. The main objective of the new research is to determine if these nutrients will decrease the risk of progression to advanced AMD, which often leads to vision loss. AREDS2 investigators are seeking 4,000 people between the ages of 50 and 85 with AMD in both eyes, or advanced AMD in one eye, to participate. For a list of study sites — nearly 100 clinical centers nationwide — eligibility requirements and additional information, call (877) 273-3780 or visit www.nei.nih.gov/AREDS2. • Coast to Coast: Readers Share Experiences with Cane Use A long cane can be an essential tool for many people who are partially sighted. It's not just for people who are blind. In our last issue of Sharing Solutions, we described the specialized evaluation and training provided by Certified Orientation & Mobility Specialists, and the numerous ways a cane can help people navigate their surroundings safely. We also asked our readers to share their experiences. Here's what you had to say: What Prompted Cane Use Numerous people reported that recommendations for using a long cane came from vision rehabilitation professionals, family members and fellow support group members whose positive experiences persuaded them to consider it for themselves. Others came to the realization on their own, as they experienced difficulties getting around, including: • missing steps and curbs • bumping into people, walls and doors • falling or tripping on broken concrete, tree roots, etc. • fear of staircases and escalators • feeling anxious when crossing streets • having trouble locating destinations or in crowded situations How a Cane Helps You People described many advantages — from feeling safer walking down the street, managing stairs, detecting the depth of curbs and signaling that they have vision loss, to feeling more confident crossing intersections and getting through crowded areas. One man pointed out, "When I use a cane in a crowd, people move out of the way. It's like the parting of the Red Sea." In addition, people indicated that they feel less awkward and more self-assured about how they appear to others. One woman found out that before she started using a cane, people thought she was intoxicated by the way she walked down the street. Another commented, "With a cane in hand, I feel secure and it gives me confidence." The cane also alerts drivers who are expected to come to a complete stop when they encounter pedestrians crossing a street guided by a dog or carrying a white cane. Unfortunately, this isn't always the case, as a number of readers reported that drivers don't always respond appropriately, which is a serious source of concern and worry. A cane can help even when you're traveling with others who are guiding you. Yet, sometimes friends and family may discourage cane use when you're out with them or you may feel it is unnecessary. One woman learned the hard way: when she accepted assistance from a woman who offered to guide her, she decided to give her cane a rest. Unfortunately, her guide neglected to tell her they were approaching a curb and they both fell. She said, "If I had used my cane while being guided, the accident could have been avoided. I would have detected the curb in advance." The point is underscored by another reader who said, "Once you start using a cane, you'll be amazed at how insecure you'll feel without it." Here are more positive comments: • "I'm able to come and go more independently." • "It prevents falls and keeps me from running into many things." • "My white cane is like a credit card. • don't leave home without it!" Concerns About Cane Use Many people admitted that they avoided the cane and put it off as long as possible, worried about how others would react, including one man who said, "The cane screams that I am blind." The cane is often viewed as a stigma and too many people simply don't understand how a cane can help. Some feel embarrassed about vision loss or vulnerable about being an easy target. Others harbor feelings of hopelessness and depression. And misconceptions about what people who are visually impaired can and cannot do are common; for example, the notion that they are unable to do anything or need others to take care of them. Often, these concerns and fears disappear as people experience first-hand the advantages of a cane, as indicated by one woman's comment, "At the beginning, I was self-conscious about using the cane but the more I realized what it can do for me, the more comfortable I became using it." And another individual put it well, "I thought the cane would detract from me as a person. Instead, it enhances my ability to be who I am — a person who is independent, energetic and involved!" Self-confident. Hopeful. Secure. Worthwhile. These words describe how some people who have become cane users feel about themselves. One woman's life in New York City became less stressful once she started to use a cane. She commented, "When I use it, the crowd parts. I make my way to the ticket booth and gate with ease, without bumping into people along the way. I love it!" Educating Others Promoting awareness about the benefits of a long cane is an important priority. One goal is to correct the common misconception that a person with a cane is blind. Another is to demonstrate how a cane actually helps people with all ranges of vision problems. A number of people told us that they take the time to explain these points to others. In addition, one community group raises awareness of white cane laws by sponsoring "cane walks," while others make presentations at local schools and service clubs. One reader suggested that a cane question be added to the written driving test to increase driver awareness. Family and Friends: Help or Hindrance? Most people found family and friends supportive of their cane use. A reader said, "They are glad I have training to travel independently and safely in my neighborhood, community and even across the country." Another shared that he feels like less of a burden to his family since he can travel independently taking buses. Some people report that there is nothing like a few close calls to make family or friends realize that the cane and sighted guide techniques can be used together to make it safer for everyone. Your Advice Overall, peoples' positive experiences outweigh their initial reservations, typified by the following: • "If you need a cane, you're only hurting yourself if you don't use it." • "Just do it and don't worry about what others might think." • "Get proper training from a certified Orientation & Mobility Specialist." • "Don't let your vanity get in the way of cane use." There is no single approach that will help people overcome concerns about using a cane. However, talking with, and accompanying, seasoned cane users can be a helpful and informative experience. Ask questions. Explore the possibility. You may discover — and welcome — a new opportunity that can make a difference in your life. • Take Part in Our Next Coast to Coast Making your home safe, comfortable and accessible is an important priority for people living with vision loss. In our spring issue of Sharing Solutions, we'll feature your strategies and solutions. Consider using the following questions as a guide at your next support group meeting or during conversations with family and friends: • What changes have you made in your home to accommodate your vision problems? Consider lighting, color and contrast, special products or devices, sensory cues or any other method that helps in your surroundings. • Are there problems that you haven't solved? If so, what are they? • What advice can you give friends or family about making their homes "friendlier" for people with vision loss? Please respond by February 15, 2007, so your experiences can be included in our next issue. Call Carol Sussman-Skalka at (212) 821-9481 or e-mail her at sharingsolutions@lighthouse.org. You can also send letters or tapes to Carol at Lighthouse International, The Sol and Lillian Goldman Building, 111 East 59th Street, New York, NY, 10022-1202. L Update: New Treatments for Wet AMD Lucentis™ now joins Macugenฎ as another FDA-approved anti-VEGF drug for the treatment of neovascular (wet) age-related macular degeneration (AMD). Anti-VEGF drugs target the proteins that trigger abnormal blood vessel growth and leakage. Avastinฎ, another anti-VEGF FDA-approved drug for colorectal cancer, is also being used off-label in the treatment of AMD. Off-label means that a drug is being used for a condition for which it did not receive original FDA-approval. Stay tuned for more details about these new treatments in our next issue. • Your Opinion Counts! We want to ensure that you continue to enjoy Sharing Solutions and are seeking your feedback. Please send this completed survey to: Sharing Solutions Survey c/o Lighthouse International, 111 East 59th Street, New York, NY 10022-1202. You can also fax the survey to (212) 821-9705. If you prefer to complete the survey by phone, call (212) 821-9470 and leave a message with the words, "Sharing Solutions," along with your name, phone number and state. We will call you back. The survey can also be e-mailed to you by contacting sharingsolutions@lighthouse.org with "Sharing Solutions Survey" in the subject line. What topics have you enjoyed most in Sharing Solutions? And why? What topics have you enjoyed least? And why? What areas would you like to see covered in future issues? In general, how do you find the content of Sharing Solutions articles? n Too simple • Just right • Too complex How do you usually read Sharing Solutions? n Large print n Audiocassette n Online n Braille Help us to get to know you! Check all statements that apply n I am visually impaired n A family member or friend is visually impaired n I work in the vision rehabilitation field n Other, please specify: Are you currently participating in a support group? n Yes, please specify: n Member n Leader n No What is your age range? n 25 – 44 n 45 – 64 n 65 – 74 n 75 – 84 n 85+ How many years of schooling have you completed? n Eleven grades or less n High school graduate n Some college n College graduate n Graduate school How often do you access the Internet for information? n Every day n Several times a week n Several times a month n Never Is there anything else you would like to share? (optional) Thank You! Sharing Solutions Cynthia Stuen, DSW/PhD Senior Vice President, Policy and Professional Services Carol J. Sussman-Skalka, LMSW, MBA Newsletter Editor Karen R. Seidman, MPA Director of Education and International Programs Laurie A. Silbersweig Editorial Manager, Marketing Jaine M. Schmidt Creative Services Director Photos by Dorothea Anne Lombardo and Peter Vidor Lighthouse International Tara A. Cortes, PhD, RN President and CEO Lighthouse International is dedicated to helping people of all ages overcome the challenges of vision loss. Lighthouse International The Sol and Lillian Goldman Building 111 East 59th Street, New York, NY 10022-1202 Tel: (212) 821-9200 • (800) 829-0500 Fax: (212) 821-9705 www.lighthouse.org ฉ 2006 Lighthouse International Printed on recycled paper J04463/F06/8500/11-06 Join Our Study on Driving and Vision • Are you 55 or older and live within 80 miles of New York City? • Do you have some problems with your eyesight? • Are you a current driver who would like to share your experiences? If the answers to these questions are "yes," we invite you to participate in a federally funded study conducted by Lighthouse International. You will receive $25 for a 90- minute interview conducted in your home. All information is kept completely confidential. To participate or learn more about the study, please contact Dr. Brent Gibson, Project Director, at (212) 821-9531 or e-mail bgibson@lighthouse.org. • Thanks for sharing … Annie Ardley, Mary Edwards and Lynn Evans, Insight Support Group, FL; Betty Banks, NY; Gertie Bias, Affiliated Blind of Louisiana Training Center Support Groups, LA; Betty Cain, Low Vision Support Group Max II, SC; Kate Chamberlin, The Lemonade Society, NY; Mary Jern, IL; Gary Ray, NC; Linda Scribner, League for the Blind and Disabled Support Groups in Auburn, Decatur, La Grange and Fort Wayne, IN; Frank Vance, Getting Your Self Together Support Group, AZ; Harold T. White, KY.