(Cover) Family and Friends Can Make a Difference! How to Help When Someone Close to You is Visually Impaired (Inside front cover) If a family member or friend is experiencing vision loss, you are in a position to provide much-needed support. But you may need support as well. You, too, may feel overwhelmed by questions, concerns and emotions that arise as a result. It can be hard to know where to begin, or how to get information and resources. Fortunately, help — for both of you — is available. Read on to learn how: – Vision rehabilitation services — counseling and training to help people overcome the challenges of vision loss — restore independence and enhance quality of life. – These services also can provide you with the support you need, as well as insights about what the person in your life is going through and how to help in a positive way. (Page 1) Open Your Eyes to the Facts Vision loss is not a normal part of aging, but the majority of Americans have limited knowledge about vision loss and aging, and assume — mistakenly — that older people become visually impaired as part of the normal aging process. The likelihood of vision impairment, however, does increase with age and will affect more and more families in the future. Among Americans age 65 and older, one in five reports some form of vision impairment, even when wearing eyeglasses. By age 75, this statistic jumps to one in four. In addition, a majority of middle-aged and older Americans fear blindness more than other physical impairments. But most people with impaired vision do not become totally blind. Armed with the right information, you can help identify serious vision problems, encourage your relative to seek professional care and be better prepared to help during the adjustment process. (Page 2) Vision Changes: What's Normal and What's Not As we age, some vision changes are normal, and some are due to eye disease. Normal changes usually can be corrected with a new eyeglass prescription or better lighting. But vision problems resulting from age-related eye diseases, such as macular degeneration, glaucoma, cataract or diabetic retinopathy, can cause permanent impairment or "low vision." Low vision, however, does not mean "no" vision. And although vision loss may be permanent, much can be done to maximize remaining — usable — vision and improve quality of life through vision rehabilitation. But first and foremost, everyone — and most especially, older adults — should have regular eye exams by an ophthalmologist or optometrist to maintain eye health and for the early detection of conditions that cause low vision. (Page 3) Understanding Vision Loss "I'd like to better understand what my wife is experiencing. Sometimes she can see fine, and sometimes she can't." People with vision problems do not all see the same. Due to blind spots in the center of vision or distortion, someone with macular degeneration may have difficulty recognizing faces or reading but is able to move around easily using peripheral (side) vision. In contrast, those with peripheral vision loss usually have problems orienting themselves in space but may be able to read. It can get confusing for you when your relative or friend with impaired vision can do some things but not others — even when the tasks seem comparable. And sometimes, vision will be affected by the degree of contrast between objects and their backgrounds or by lighting conditions. For example, a person may see better on a cloudy day than on a sunny day (or vice versa). To avoid confusion, ask what can and cannot be seen at any given time. Open communication will lead to better understanding. (Page 4) Dealing with the Emotional Impact "My husband has been so depressed since he lost his vision." People who become visually impaired later in life experience a range of feelings, including sadness, anger, worry, frustration and fear. The challenges they face may seem overwhelming and insurmountable. You also may have similar reactions. While these feelings are common — and understandable — they should not be ignored. Research has shown that family members can ease the adjustment to vision loss by listening to their relatives' feelings and offering help when it's needed. Also, individual and family counseling can enable everyone affected to better cope with their feelings. Support groups, both for the person with vision loss and for family members, can be very helpful as well. According to Lighthouse research, partners of people who are visually impaired reported that their participation in support groups provided them with an emotional outlet and improved understanding in both directions. (Page 5) What You Should Know about Vision Rehabilitation: A Path to Independence Vision rehabilitation helps people with impaired vision develop the skills and strategies needed to accomplish whatever goals they set for themselves, from continuing their jobs to keeping up with favorite hobbies — at whatever stage of life. While vision rehabilitation services cannot restore normal vision, they can help people make the most of any existing sight, maintain an independent lifestyle, as well as minimize both the practical and emotional consequences of vision loss. Vision rehabilitation helps people with vision loss: – understand and deal with their feelings – take care of their homes and cook safely – travel safely in the community – manage medications – handle personal grooming – use computers and meet career objectives – learn to read braille or use large print – manage finances – and much more (Page 6) The best way to help a family member or friend with impaired vision is to learn about vision rehabilitation and encourage the use of these services. When people participate in vision rehabilitation, they begin to feel better about themselves — they function better and are able to meet their personal goals. According to Lighthouse research, 94% of middle-aged and older adults who reported some form of vision problems did not take advantage of any type of vision rehabilitation services. Learning about vision rehabilitation early on, and understanding how it can improve everyday functioning, can help both of you deal with vision changes over time. And many people with vision loss are surprised to learn that they can continue many of the activities they enjoyed before. The individual services that comprise vision rehabilitation are described on the following pages, so that you can become familiar with the benefits they bring, as well as with some of the terminology used by professionals. Armed with this knowledge, you'll be better able to help your family member or friend. (Page 7) – Making the Most of Existing Vision — Low Vision Care Most people with age-related vision loss do not become totally blind — they still have some usable vision. Therefore, they can benefit from services provided by a low vision specialist, in addition to the care received from regular eyecare professionals. Specialized optometrists or ophthalmologists, who have particular expertise in low vision care, can assess patients' usable vision and prescribe optical devices (such as high-powered magnifiers) and electronic devices (such as computers and closed-circuit TVs for reading) to help people perform many day-to-day activities. The choice of devices depends on the activity, and instruction is essential to ensure that they are used effectively and successfully. – Getting Around Safely — Orientation and Mobility Training Certified orientation and mobility specialists teach people with vision loss to move around safely both indoors and outdoors — through the use of existing vision, auditory cues and/or other techniques (using a white cane, dog guide or a (Page 8) sighted guide) — so they can safely shop, visit friends, keep medical appointments and move around on their own. Detecting curbs, crossing streets, riding public transportation, and getting into and out of cars safely are all possible when the correct techniques are used. – Relearning the Tasks of Daily Living — Rehabilitation Teaching Certified rehabilitation teachers help people with vision loss learn techniques to remain independent at home, at work and in the community. For example, they can teach safe, new ways of doing many essential tasks — from operating a stove or microwave, to organizing and labeling medications. They also may suggest adaptations to everyday items such as large print or talking products, and the use of contrasting colors and tactile markings to better distinguish objects — all of which make it easier for people with vision loss to live independently. (Page 9) – Coping with Vision Loss — Counseling An important part of the rehabilitation process, counseling is conducted by trained social workers or psychologists — in both individual and group sessions — to help people and their families cope with the depression and frustration that may accompany serious vision loss. – Learning from Others — Support Groups It helps to know you're not alone. Many people with vision loss, as well as their family members, benefit from meeting with, and talking to, others in similar situations. Support groups meet in person, by conference call or in chat rooms on the Internet. How You Can Help "When I try to do things for my mother, she seems to get annoyed at me." It's often hard for family members to know when, or how much, to help. Take time to talk with your relative or friend about the things he/she can and cannot do, and ask what kind of help is needed. (Page 10) When people with vision loss can do things independently, let them! It's important that they regain confidence by doing tasks on their own. Research has shown that adults who become visually impaired are able to do more things for themselves than family members think or believe. And by helping only when needed, you'll have more time for yourself and may feel less overwhelmed. You may find it helpful to observe, or participate in, a vision rehabilitation training session, or to sit in on a low vision exam (with permission, of course). Seeing firsthand the various techniques taught can allay your safety concerns. In addition, research findings demonstrate that family members' active involvement in vision rehabilitation is associated with increased participation in social activities over time by those with vision loss. So everyone benefits! (Page 11) Getting More Information To learn more about vision changes, request a copy of our free booklet, Vision Loss is Not a Normal Part of Aging — Open Your Eyes to the Facts! Call Lighthouse International's toll-free Information & Resource Service, (800) 829-0500, or E-mail: info@lighthouse.org. An information specialist will provide resources to meet your specific needs about vision rehabilitation services, support groups, and low vision clinics and specialists in your area. You can request copies of Sharing Solutions (a free newsletter for people with vision loss and their support networks) and other helpful publications, such as: – When Your Partner Becomes Visually Impaired: Helpful Strategies and Tips for Coping — Even if you're not a "partner," this free booklet offers many practical tips for family members and friends that you may find useful. – Take Charge of Your Life with Vision Rehabilitation — This 72-page manual provides practical tips for living independently with vision loss and outlines the benefits of vision rehabilitation. A wealth of information about vision impairment and vision rehabilitation also can be found online at www.lighthouse.org and at www.lighthouselink.org (fall 2002). (Page 12) Your Opinion Counts So that we can provide the most useful information to as many people as possible, we would greatly appreciate your feedback about materials from Lighthouse International's "Vision Loss is Not a Normal Part of Aging" campaign. Because we know your time is valuable, you'll receive a free gift in exchange for your input. Contact us to get started: – Call toll free (800) 829-0500 (ext. 537) to complete the questionnaire by phone – E-mail vcimarolli@lighthouse.org, and we'll send back questions for you to answer – Complete the online questionnaire at www.lighthouse.org/vlsurvey1/ Thank you! (Inside back cover) The material in this booklet was drawn in part from research funded by the AARP Andrus Foundation, and conducted by the Arlene R. Gordon Research Institute at Lighthouse International. The publication of this booklet was made possible by a grant from the AARP Andrus Foundation. We also would like to thank the National Eye Institute for supplemental funding. AARP/Andrus logo NEI logo By Carol J. Sussman-Skalka, CSW, MBA © 2005 Lighthouse International (Back cover) Lighthouse logo Lighthouse International is a leading resource worldwide on vision impairment and vision rehabilitation. Through its pioneering work in vision rehabilitation services, education, research, prevention and advocacy, Lighthouse International enables people of all ages who are blind or partially sighted to lead independent and productive lives. Founded in 1905 and headquartered in New York, Lighthouse International is a not-for-profit organization, and depends on the support and generosity of individuals, foundations and corporations. Lighthouse Center for Education Lighthouse International 111 East 59th Street New York, NY 10022-1202 Tel (212) 821-9200 (800) 829-0500 Fax (212) 821-9705 TTY (212) 821-9713 www.lighthouse.org Request a copy of our free booklet, Vision Loss is Not a Normal Part of Aging — Open Your Eyes to the Facts!