Diabetic retinopathy (DR) is the leading cause of new blindness in people aged 25-74 in the United States.
Many people with DR live with permanent vision changes or blindness. With that in mind, planning for the future is an important step that families should take together.
In this article, Ability Central addresses long-term care and support questions for people with DR, including:
What are the long-term impacts of diabetic retinopathy?
Where can I find service providers for diabetic retinopathy?
Does the Americans with Disabilities Act (ADA) protect people with diabetic retinopathy?
What medical and financial aid programs assist people with DR in the United States?
What mental health issues often co-exist with diabetic retinopathy?
What other health issues often appear with diabetic retinopathy?
How can I find appropriate home health care and long-term care facilities?
What support groups are available?
Where can I get more information?
What are the long-term impacts of diabetic retinopathy (DR)?
Eye diseases like diabetic retinopathy (DR) play a large role in our professional and personal lives.
Someone with DR may develop life-altering vision changes like:
Permanent blurriness
Dark spots
Loss of peripheral vision
In some cases, DR leads to total blindness.
Vision loss impacts every facet of someone’s life, from their career to their family. Some people with DR must change or quit their jobs because of vision loss. Rising costs of medical care paired with lost wages can lead to major financial difficulties for families.
Plus, diabetic retinopathy is a complication of diabetes, so future treatments must include diabetes care and its potential complications.
The costs of such care can be astronomical, but luckily, there are options to help families cope with the financial impact of DR.
Where can I find service providers for diabetic retinopathy?
One of the most beneficial things you can include in a long-term DR care plan is a trusted team of doctors.
Your primary care physician or family doctor—whomever is responsible for your diabetes care—may have referrals for eye disease specialists. If you have private medical insurance, your insurance provider is also a good resource for trusted professionals.
An estimated 58% of people with diabetes neglect to get annual eye exams. The American Society of Retina Specialists (ASRS) has a searchable retina specialist tool to help find an eye care professional who specializes in diabetic eye screening.
In addition, Ability Central offers a Service Locator tool to search for nonprofit service providers throughout the United States. It’s an excellent first step in connecting with the help you need.
Does the Americans with Disabilities Act (ADA) protect people with diabetic retinopathy?
The Americans with Disabilities Act (ADA) protects people with disabilities from discrimination in the workplace and schools.
Rather than covering a specific list of disabilities, the ADA covers anyone with a disability that substantially limits their day-to-day life.
People with diabetic retinopathy may be protected under the ADA on a case-by-case basis. Especially when DR has caused major vision changes or vision loss, the ADA protects people with DR’s right to life without discrimination.
Learn more about the ADA and what it protects in our guide, ADA Overview: What Is the Americans With Disabilities Act?
What medical and financial aid programs assist people with diabetic retinopathy in the United States?
The U.S. government offers many forms of assistance for people who have diabetic retinopathy:
Medicare covers people 65 and older and people with permanent disabilities.
Medicaid covers people with disabilities who have lower incomes. Vision coverage varies by state.
The Affordable Care Act (ACA) may also assist those who qualify.
The U.S. Department of Veterans Affairs (VA) offers programs and partnerships to help with management and treatment. The rate at which veterans live with diabetes is more than double that of the general population.
Many nonprofits and community organizations offer support through:
Grants
Low-cost care programs
Other services that help people with fixed incomes access quality DR care
For example, the American Society of Retina Specialists (ASRS) offers a collection of financial assistance available for medications.
Use Ability Central’s Service Locator tool to find a nonprofit near you specializing in vision disabilities like diabetic retinopathy.
What mental health issues often co-exist with diabetic retinopathy?
Diabetic retinopathy is linked to anxiety and depression. One study found that:
25% of diabetic retinopathy patients deal with depression,
13.5% deal with anxiety symptoms, and
11.5% deal with a combination of both.
Much of managing DR involves managing underlying diabetes. Medication, therapy, and certain lifestyle changes can help people with DR manage their symptoms and their mental health.
Changes may include:
Regular exercise. Doctors recommend 30 minutes a day, 5 days per week.
Healthy diet. A diabetes-friendly diet limits sugar and fat and emphasizes protein and vegetables.
Counseling. This could be in one-on-one, family, or group therapy settings.
Support groups. Connecting with others who share a DR diagnosis can be validating and encouraging.
What other health issues often appear with diabetic retinopathy?
Because diabetic retinopathy is a complication of diabetes, most conditions that co-occur with DR also co-occur with diabetes.
These include:
Dangerous blood sugar levels (hypoglycemia and hyperglycemia)
Nerve damage
Hearing loss and other auditory issues like tinnitus
Uncontrolled weight changes
Liver disease
Heart disease
Kidney disease
Certain types of cancer (like bladder, breast, colon, liver, or pancreatic cancer)
Skin conditions like athlete’s foot or diabetic blisters
Sleep problems like insomnia, restless legs syndrome, and sleep apnea
Because people with diabetes are at a higher risk of developing other eye diseases, diabetic retinopathy is more likely to co-occur with:
Deafblindness (when combined with diabetic hearing loss)
Macular degeneration (also called diabetic macular edema)
To learn more about conditions that appear alongside diabetes, see What Conditions Show Up with Diabetes? All About Diabetic Comorbidities.
How can I find home health care and assisted long-term care facilities for someone with diabetic retinopathy?
Vision loss makes living alone a challenge for many older adults. When it becomes too dangerous to live alone, an assisted living community may offer critical support for someone with DR. These communities provide:
Safety measures with people with low vision in mind.
Help with daily personal care.
Housekeeping.
Social opportunities.
Transportation to medical facilities, shopping centers, and more.
Exercise opportunities like group classes.
Healthy diet through meal plans or meal delivery services.
Ask your doctor for suggestions or use our Service Locator tool to find a nonprofit care provider near you.
What diabetic retinopathy support groups are available?
Finding a community that will support and encourage you is essential for people with DR. This community can include caregivers and family, but connecting with people with the same diagnosis goes a long way. That’s where support groups come in.
Support groups help the person with DR and their loved ones feel less isolated. Your eye care specialist may have connections with a local support group. In addition, online options include:
Association of Diabetes Care and Education Specialists (ADCES)
Diabetic Retinopathy Support Group on Facebook
Where can I get more information about diabetic retinopathy?
For information about other vision-related disabilities, see Ability Central’s full library of resources.
For DR-specific information, see:
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.
