UPDATE Macular Degeneration
Winter 2026
2026 CAREGIVERS Special Edition
FAMILY CAREGIVING
IN THIS ISSUE
Seeing Through the Fog: Understanding Macular Degeneration
Chairman’s Coner
Partners in Adaptation: Supporting Caregivers and People with Low Vision
The Burden of AMD
Preserve & Protect Your Vision– Donate Today
Seeing Through the Fog: Understanding Macular Degeneration
Helping with reading, driving and daily tasks, caregivers often serve as the ‘eyes’ for their loved ones
By Paul Wynn, AARP, Published September 24, 2025
In her early 40s, Jan* began noticing subtle but troubling vision changes. Driving at night felt risky, and road signs blurred into the dark. Like many people, she chalked it up to needing stronger eyeglasses. But under the care of her longtime eye doctor, she eventually learned the true cause: age-related macular degeneration, or AMD.
As Jan’s vision declined, once enjoyable activities like reading recipes and cooking favorite meals grew increasingly difficult. At their home in Cincinnati, her 82-year-old mom, Carolyn, reads recipes aloud, measures ingredients and keeps her daughter connected to the kitchen rituals she cherishes.
Three years ago, Jan, now 57, developed geographic atrophy (GA), an advanced form of dry AMD. She is legally blind in her left eye. Her doctor recommended a prescription eye injection given monthly to help slow progression of geographic atrophy in her right eye. Jan’s goal is to preserve her vision for as long as possible.
Still working as an administrative assistant, Jan relies on her mom not only to help her navigate daily life but also to keep her spirits up. “I call my mom ‘Eyes ‘ because she’s always there to help me see what I can’t,
and to help me find the silver lining every day.”
What is age-related macular degeneration?
For nearly 20 million Americans, AMD is more than a medical term; it’s a daily challenge that can affect independence, mobility and quality of life. AMD damages the macula, a small part of the retina located at the back of the eye. The macula is responsible for sharp, central vision, which we rely on for activities such as reading, recognizing faces, driving and even seeing fine details on a smartphone or tablet.
“Although significant advances have been made in treating AMD, it remains the leading cause of severe vision loss for adults over 50, affecting far more people than glaucoma,” says Dr. Jeffry Gerson, an optometrist in private practice in Olathe, Kansas.
There are two main types of AMD.
Dry AMD: This is the most common form of AMD, affecting about 85 to 90 percent of people with the condition. It develops slowly and is marked by thinning of the macula and the buildup of yellowish fatty deposits. As these deposits grow in size and number, the risk of developing wet AMD increases. Symptoms can include blurry or distorted vision, trouble seeing in low lighting and difficulty seeing fine details up close or at a distance. However, many people with dry AMD notice few or no changes in their vision for years. GA is an advanced form of dry AMD in which patches of retinal cells die (atrophy), causing blind spots and gradual central vision loss. Unlike wet AMD, GA does not involve abnormal blood vessel growth but can still lead to significant vision impairment over time. It affects more than 1 million people in the U.S.
Wet AMD: This less common but more severe form of AMD occurs when abnormal blood vessels grow under the delicate retinal tissue and leak fluid or blood, rapidly damaging the macula. About 10 to 15 percent of people with dry AMD convert to this form, which can quickly destroy the sharp central vision needed for activities like reading, driving and using a computer. Symptoms may include blurred or distorted vision, straight lines appearing wavy and dark spots in the center of vision, though some people notice no changes until significant vision loss has occurred.
Impact on daily life
For people like Jan, the effects of GA extend far beyond blurred vision. Tasks that were once routine — managing medications, paying bills, watching TV — can become frustrating. Loss of independence around driving is a major factor for patients. Several years ago, Jan had to give up driving and now relies on her mom to drive her everywhere. Even hobbies such as gardening, watching movies or reading can feel inaccessible.
“The loss of central vision isn’t just physical,” explains Gerson. “It affects confidence, independence and mental health. People often experience anxiety, frustration or depression as they adjust to these changes.”
This is where caregivers step in, providing practical support and emotional encouragement while helping their loved ones adapt to a new way of seeing the world. Caregivers often become their loved one’s vision for everyday tasks and needs.
“Caring for a loved one with macular degeneration is a constant balancing act,” says Donna Auger, executive director of the Macular Degeneration Association in Sarasota, Florida. “Patients may feel frustrated or isolated, or feel like a burden as they lose their independence, while caregivers face the emotional strain of finding the best way to support them.”
Navigating AMD at home
The diagnosis of AMD significantly hindered the ability of Frances Owens, 79, to care for her terminally ill husband. Her declining vision made complex tasks, like administering IV medications, managing feeding schedules and monitoring his condition, far more challenging and stressful.
Her daughters, Jennifer and Andrea Owens, moved in to help care for their dad, while also supporting their mom as her vision worsened. “Mom was always the caregiver,” recalls Jennifer. “Then the roles reversed, and it became our turn to be there for her.”
Frances was diagnosed with AMD seven years ago; her central vision slowly eroded in both eyes, making daily activities, from reading bills to cooking and navigating her home, daunting challenges. Both daughters stepped in to assist their mom, helping with everything from managing medications to adapting her environment with large-print labels and specialized lighting. “You feel helpless at first,” says Frances. “But having my daughters by my side makes all the difference.”
Jennifer found a low-vision occupational therapist to assist her mom and help her reclaim some independence at home. “Occupational therapy helps people with low vision regain some quality of life by teaching them to maximize their remaining sight, safely navigate their homes and continue the activities that matter most to them,” says Vanessa Carmody, an occupational therapist specializing in low-vision care in Sarasota, Florida. “Caregivers play a critical role in supporting this process, reinforcing exercises at home and helping create environments that are safe, accessible and tailored to the individual’s vision.”
How caregivers can help
Many caregivers feel overwhelmed, alone and unsure where to turn for help, highlighting the need for better support systems and resources for both patients and their families. Here are some practical ways caregivers can support loved ones with AMD.
Facilitating safe mobility
Even with peripheral vision intact, navigating a familiar home can become tricky when central vision is compromised. Caregivers can help by keeping walkways clear, labeling furniture edges and ensuring adequate lighting in hallways and staircases. “Simple tools like contrast tape on steps or brightly colored markers on appliance controls can make a big difference,” says Carmody.
Assisting with daily activities
Tasks such as reading labels, measuring ingredients or managing medications can become difficult. Large-print materials, magnifiers and smartphone apps that read text aloud can help, but some tasks may still require hands-on support like Jan’s mom provides. Caregivers can help by prepping meals, labeling household items in large print or with tactile markers, and using black cutting boards that provide more contrast.
Jan’s mom helps her continue cooking by reading directions aloud and measuring ingredients.
Finding low-vision specialists
A low-vision specialist is typically an optometrist with advanced training in helping people who have permanent vision loss that can’t be corrected with standard glasses, contacts, surgery or medication. Instead of treating the disease itself, they focus on maximizing the sight a person still has. They evaluate how someone’s vision loss affects daily tasks and match them with tools, strategies and training to stay independent. “This can include prescribing special high-powered glasses, magnifiers, telescopic lenses, electronic reading devices and improved lighting,” says Gerson. Occupational and physical therapists can also specialize in low-vision care.
Tapping into technology
Low-vision aids have advanced dramatically in recent years. Screen-reading software, voice-activated assistants and devices that enlarge or project text can help people maintain independence. Caregivers can help research, set up and teach these tools, making daily tasks more manageable and boosting confidence, adds Carmody.
Providing emotional support
Losing the ability to see clearly is emotionally challenging. “Caregivers play a crucial role in offering reassurance, empathy and encouragement,” says Jennifer Owens. Simply being present, listening and validating feelings can reduce anxiety and frustration. Support groups, either in-person or online, can also provide a community for both people with AMD and their caregivers.
Preparing for the future
AMD is a progressive disease, so planning ahead is crucial. Caregivers can help loved ones explore home modifications, access low-vision specialists and plan for transportation alternatives.
Jennifer has worked with Carmody to make a series of changes around their house to reduce fall risks and make daily life safer for her mom. Bright, cool-white task lights were installed in key areas such as Frances’s reading and writing space and the kitchen, after experimenting to find a specific color of light that provides the best contrast. In the kitchen, they swapped out traditional appliances for safer alternatives, including an electric teakettle with an automatic shutoff so she can make coffee.
They also added raised, colored tactile markers to the microwave’s 30-second start button so she can operate it by touch rather than sight. Because the white knobs on the oven are hard for her to see, Frances now avoids using it entirely, relying on family members for stovetop or oven cooking. “Together, these small but strategic changes have helped her remain more independent while reducing the risk of accidents,” says Jennifer.
*Last name has been withheld for privacy
Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications. Permission obtained from Paul Wynn to post this article as written. https://www.aarp.org/caregiving/medical/macular-degeneration.html
Chairman’s Corner
Dear Friends,
Our Winter Newsletter is dedicated to caregivers— those remarkable, often unsung heroes who shoulder immense responsibilities with quiet strength and unwavering devotion.
Caregiving can be both stressful and thankless, yet countless individuals embrace it with dedication and commitment.
Caregivers support their loved ones or friends manage daily life and activities through selfless acts. Their responsibilities can vary widely, including providing personal care, managing medication, assisting with mobility and daily tasks, offering emotional support, and coordinating with healthcare providers.
It is essential for caregivers to prioritize their own health by maintaining a balanced diet, exercising, and getting adequate rest. Building a support network and seeking help from others is crucial, as is making time for personal interests whether through hobbies, relaxation, and social connections.
Additionally, setting healthy boundaries, joining a support group, and considering professional help, such as therapy, can be vital in managing stress and preventing burnout.
Thank you to all the caregivers out there! Your compassion and resilience make an extraordinary difference.
Whether you have a loved one or friend newly diagnosed or have been living with macular degeneration for years, please remember that you are not alone. We are here to walk beside you every step of the way, providing knowledge, support, and hope.
Thank you for your continued support of the Macular Degeneration Association.
Sincerely,
Lawrence S. Hoffheimer
Macular Degeneration Association
Chairman
PARTNERS IN ADAPTATION: Supporting Caregivers and People with Low Vision
By: Dr. Vanessa Carmody, Low Vision Works of Florida
Losing vision later in life is one of the most feared health challenges for older adults. It often ranks alongside losing mobility or memory. This fear can grow because many people expect retirement to be a time for hobbies and leisure activities. Vision loss can suddenly disrupt those plans. Sadly, many people with vision loss and their loved ones lose hope when they hear that nothing more can be done. There are proven ways to help. Hope can be easy to take away, and hard to give back.
It takes a team approach to lift and light up possibilities for someone who has experienced vision loss. Adaptation does not often happen automatically. It requires effort, teamwork, and encouragement. Helping someone with vision loss adjust takes energy, patience, and clear guidance. Caregiving for a person with vision loss can be stressful because it often changes identity and roles. Partners who were used to shared independence may feel overwhelmed by new duties. Caregivers must handle mood changes, frustration, and grief while sorting through confusing information from multiple sources. Furthermore, system barriers, such as unclear referrals and poor communication, can also add to the stress.
Rehabilitation professionals and community groups can play a key role in showing that vision loss is a challenge that can be managed, not a sentence to isolation. The Macular Degeneration Association and other trusted groups strive to bring clarity to caregivers and those with vision loss. To make adaptation easier, caregivers need practical tools and strategies they can use every day. The following tips focus on communication, problem-solving, stress management, and connecting with resources to build confidence and independence.
Practical Strategies and Tools for Caregivers
Communication and Advocacy: Prepare questions before medical visits. Focus on options, devices, and resources. Use positive language and avoid terms like “blind” when some vision remains. Encourage healthcare providers to understand the person as an individual, not just a diagnosis, and to take time to listen. Ask for a plan that considers all aspects of life and promotes collaboration between medical and non-medical professionals.
Adaptive Problem-Solving: Turn obstacles into opportunities. For example, difficulty dialing numbers? Try voice-activated calling to save time and reduce stress. Celebrate small wins like discovering the joy of audiobooks.
Stress Management: Incorporate daily mindfulness practices like 5-minute guided meditations or deep breathing (inhale for 4 counts, exhale for 6). Keep a gratitude journal to reframe challenges. Schedule short breaks every hour. Step outside, stretch, or listen to calming music. End your day with a relaxing ritual, such as a listening to your favorite song.
Set Goals: Make simple goals together. Examples include preparing three questions for the next eye visit, practicing one stress technique daily, or recording one positive experience each day.
Connect with Trusted Resources: Connect with an occupational therapist who specializes in helping those with low vision and with local organizations who have vision rehabilitation specialists and healthcare advocates. Join support groups through local, state and national groups. Online forums can help when in-person options are limited.
Degeneration Association’s Patient Resources page. Lastly, for caregivers, burnout is a real risk. Watch for signs like fatigue and irritability. Set boundaries, seek respite care, and join peer groups. Vision loss is life-changing, but it does not have to define the future. With teamwork, advocacy, and adaptive strategies, caregivers and people with low vision can live with hope and independence.
The Burden of AMD
By Jeffry D. Gerson, O.D., F.A.A.O.
Medical Director for the Macular Degeneration Association
The effects of age-related macular degeneration go beyond the patient. Arguably, the person affected the most is the person suffering with the condition.
Whether it be from a perspective of vision loss, its emotional toll or how it affects independence/dependence. For this, I will discuss how AMD affects those around the person with AMD.
Often times, AMD can cause changes to vision, beyond what letters you can read on an eyechart. Although requirements for driver’s license generally stress how small of letters you can read on a chart, there is more to vision than this, so even if you can read relatively small letters, you may not be functioning well. This can lead to dependence on others.
One of the main things that a caregiver may need to do is provide transportation to doctor visits. If somebody is receiving injections for their macular degeneration, they may need transportation provided on a monthly visit for appointments that could last up to several hours.
Another challenge involved in these appointments is to help the patient to understand what is going on. It becomes not just transportation but also support which needs understanding. Besides help at visits, caretakers may need to help around he home.
People with AMD are more likely to need help with otherwise simple tasks like cooking and cleaning. They may also need help with mobility issues, as people with vision loss are more at risk of falls and the complications that come with them.
A potential benefit for caretakers is partaking in the positive lifestyle changes that are important for people with AMD. A healthy diet and increased physical activity are good for anybody. So, if a caretaker is “forced” to live healthier, then they are benefitting (always nice to find a silver lining!).
Important for caretakers are sources of education and information for themselves and their loved-ones. The Macular Degeneration Association (macularhope.org) can be a great start for where to find information and answers to questions.
HOW TO GIVE
Phone, Mail or Online
Phone: Please call (941)893-4387 today to speak to one of our Donor Services Representatives.
Mail: Send your check or money order today payable to:
MACULAR DEGENERATION ASSOCIATION
5969 Cattleridge Boulevard, Suite 100 | Sarasota, FL 34232
Online: Please visit www.macularhope.org today and click on the Donation tab.
Stocks, Securities, Mutual Funds and IRAs
Please give serious consideration to the donation of stock and mutual fund shares as this offers numerous opportunities
to make a most gracious gift and receive tax advantages.
Wills, Bequests and Planned Gifts
Please give serious consideration to the designation of MDA in your Will, Charitable Trusts, Life Insurance, Appreciated
Securities and Real Estate as this offers preplanned giving opportunities that will serve the macular community for
years to come. Please call Lynne Henry (941)893-4389 at the Macular Degeneration Association, today, for personal
assistance in initiating this effort.
The following language has been reviewed and is deemed a legally acceptable form for including such a bequest in a will:
“I give and bequeath to the Macular Degeneration Association, 5969 Cattleridge Blvd. Suite # 100 Sarasota, FL 34232
for discretionary use in carrying out its aims and purposes, (the sum of $_____) or ( a sum equal to _______% of
the value of my gross estate at the time of my death under this will or any codicil hereto).”
The Macular Degeneration Association Federal ID number is 27-3025707
MEMORIAL AND HONOR GIVING
Honor a family member, friend or special event by donating to MDA. Pay tribute to someone you love whose life
has been impacted by macular degeneration. In lieu of flowers, please consider designating Macular Degeneration
Association as your charity of choice.
WORKPLACE GIVING
Launch a Giving Campaign
Please consider leading a team at work by encouraging your colleagues and staff to join together to help those
living with macular degeneration. Launch a workplace giving campaign today.
Ask about Matching Gifts
Many gracious employers double or even triple charitable donations made by individual employees. Some companies
will match gifts made by retirees and or their spouses. Contact your employer for matching gift eligibility
as this allows you to maximize your personal donation.
Thank you!