The long-term challenges associated with macular degeneration (AMD) can be rough on people with AMD and their families.
AMD-related vision loss has wide-reaching impacts—not just on someone’s physical health, but on their financial and mental health, too. As the disease progresses and someone’s central vision worsens or disappears, families must be prepared for major changes in life.
With that in mind, it’s important to make a plan for long-term AMD care as soon as possible after a diagnosis. In this article, Ability Central answers some of your most pressing questions about long-term care for macular degeneration, including:
Is there a cure for macular degeneration?
Where can I find service providers for macular degeneration?
Does the Americans with Disabilities Act (ADA) cover macular degeneration?
What medical and financial aid programs assist people in the United States diagnosed with macular degeneration?
What mental health issues often accompany macular degeneration?
When should I consider assisted living for macular degeneration?
What is a macular degeneration support group and how do I find one?
Where can I get more information about macular degeneration?
Is there a cure for macular degeneration?
At this time, there is no cure for macular degeneration. While many treatments have helped slow the disease’s progression or minimize its symptoms, macular degeneration is a progressive disease. That means it gets worse over time, and many people with macular degeneration will lose part or all of their central vision.
Just like other diagnoses, navigating a new macular degeneration diagnosis needs a long-term plan. Your needs today may not match your needs a few years from now. With that in mind, it’s important to make decisions as soon as possible to reduce stress for yourself and your family down the line.
Where can I find service providers for macular degeneration?
The best place to start when building your macular degeneration care team is with the doctor who diagnosed your AMD. Most eye doctors and family doctors keep referral networks for specialists like ophthalmologists and retina specialists and can make a trusted recommendation. You may also be able to connect with an insurance representative to find in-network care.
If you’re not sure where to start, Ability Central offers a Service Locator tool linked to thousands of nonprofits, community organizations, and providers all over the United States. Check it out today to connect with an organization near you serving people with vision disabilities.
Does the Americans with Disabilities Act (ADA) cover macular degeneration?
The Americans with Disabilities Act, or ADA, guarantees certain rights for people with disabilities that “substantially limit” one or more major life activities. The ADA does not keep a strict list of protected disabilities. Instead, the ADA’s protections apply to “anyone with a disability.”
Under this definition, macular degeneration could qualify as a disability under the ADA if vision loss caused by AMD is severe enough to disrupt someone’s daily life. This varies on a case-by-case basis, so consult a disability rights attorney or a local disability rights nonprofit to see if you qualify.
To learn more about the ADA, its history, and what it guarantees, see ADA Overview: What Is the Americans With Disabilities Act?
What medical and financial aid programs assist people in the United States diagnosed with macular degeneration?
If you live in the United States, these federal programs may help offset the costs of macular degeneration care and treatment:
Medicare is a federal health insurance program for people aged 65 or older who are receiving Social Security retirement benefits or who are younger than 65 and have received Social Security disability benefits for at least 24 months.
Medicare Advantage allows you to choose a “managed care” plan such as Medicare Health Maintenance Organization (HMO), Preferred Provider Organization (PPO), or Point of Service (POS).
Medigap insurance supplements the person's Medicare coverage. Where Medicare lacks, Medigap can help with things like deductibles.
Medicaid is a program administered by each state. Medicaid pays for medical care for people with very low income, and it can assist with long-term care for people who have used up most of their own money. is a program administered by each state. Medicaid pays for medical care for people with very low income, and it can assist with long-term care for people who have used up most of their own money.
Social Security Disability Insurance (SSDI) provides workers younger than 65 with Social Security disability payments. To qualify, the person must be unable to work in any occupation.
The Compassionate Allowance Initiative (CAI) allows people with younger-onset Alzheimer’s disease to receive SSDI as long as they meet all other criteria.
Supplemental Security Income (SSI) guarantees a minimum monthly income for people aged 65 or older, are disabled or blind, and have minimal income and assets. To qualify for SSI benefits, the person must meet the Social Security Administration's definition of disability.
Veteran’s Affairs (VA) provides health care benefits for veterans who have actively served in the military.
What mental health issues often accompany macular degeneration?
Vision loss caused by macular degeneration can have wide-reaching impacts. One of the most serious impacts is on someone’s mental health. This is partially due to aging: seniors are at a higher risk of developing depression or anxiety because of chronic health conditions or major, unpredictable changes to their lifestyles.
As vision loss worsens, someone with AMD may feel like they’re losing their independence, especially if they are no longer able to do things like drive, read, or watch TV. These changes can come with feelings of worry, fear, anger, frustration, or bitterness.
Macular degeneration is also linked to:
Loneliness
Social isolation
Anxiety
Depression
Irritability or aggression
Difficulty concentrating
Restlessness
Fatigue
Insomnia
Weight gain or loss due to changes in appetite
Suicidal ideation
Mental health care for people with AMD can also be complicated by other diseases or conditions that often appear alongside macular degeneration. To learn more about these conditions, check out Macular Degeneration: Early Symptoms, Diagnosis, and Treatment.
When should I consider assisted living for macular degeneration?
The most pressing symptom of AMD is vision loss. Because macular degeneration is a progressive disease, your needs today may not match your needs in the future.
As central vision worsens, someone with AMD may need more help managing their everyday care. This is especially true for people living with both AMD and another age-related disability, like Alzheimer’s disease or dementia. Assisted living programs, whether in a facility or at home, can help lower some of the stress associated with long-term AMD care.
There are different forms of professional help people with macular degeneration and their families can seek out, including:
Day-to-day support, like meal delivery, supervision, or transportation assistance.
Adult day care centers or respite services, which provide short-term care for people with vision disabilities when their caregivers are busy or need a break.
Home health care services, like live-in nurses, safety aides, or on-call doctors. Many home health care services can be partially or fully covered by insurance with a doctor’s order. Contact your health insurance company for more information.
Residential care, like senior living facilities, memory care centers, or nursing homes.
Hospice services, which provide end-of-life support. Hospice organizations and facilities provide comfort for people with AD and their families as they navigate the final stages of Alzheimer’s disease.
If AMD symptoms are too much for you or your loved ones to handle on your own, you can research assisted living and senior care programs through services like A Place for Mom.
What is a macular degeneration support group and how do I find one?
A support group brings people with similar backgrounds and life experiences together to share their struggles, enjoy victories, and be in community with each other.
Support groups are a great way for people with macular degeneration, their caregivers, and their friends and families to connect with people facing the same daily challenges. These support groups boost mental health by providing:
Social opportunities
Time to connect with people who get what you’re going through
Critical information, like the latest research or invitations to participate in clinical studies
Some organizations offer support groups that specialize in things like:
Stage-specific AMD support, like groups focused on tips for the newly diagnosed or groups focused on end-of-life care
Support for kids and teens affected by a family member’s AMD diagnosis
Spouses who are also caregivers
Adult children caring for their parents with AMD
Parents of kids with congenital or early-onset macular degeneration
You can find support groups and other programs near you through:
Macular Society (also known as the Macular Disease Society)
The Ability Central Service Locator tool, a nationwide database of hundreds of organizations serving people with vision loss and conditions like AMD
Where can I get more information about macular degeneration?
To learn more about macular degeneration, check out the rest of our series about the disease:
For more information about eye diseases, vision loss, and other vision-related conditions, check out:
Do I Have Cataracts? Cloudy Vision, Faded Colors, and Other Symptoms of Cataracts
What is Usher Syndrome? Facts About Genetic Vision and Hearing Loss
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
