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5 Tips on AMD Caregiving

By: Samuel Masket MD

Despite recent projections estimating the number of individuals in the U.S. with age-related macular degeneration (AMD) will reach 20 million in 2020, new survey results reveal that nearly 75 percent of Americans still don’t know AMD – the loss of one’s central vision - is the leading cause of legal blindness in older adults. The top choice selected was, incorrectly, glaucoma.
 
The survey also found that 43% of Americans age 65 years or older (equivalent to nearly 20 million Americans) have or know someone with AMD and find themselves assisting those individuals frequently, despite not being familiar with this debilitating form of blindness.
 
What is Age-Related Macular Degeneration?
The signs of AMD are subtle at first. Straight lines, like mailbox posts, may appear bent or crooked, or vision might be slightly blurred. It isn’t until AMD progresses that caregivers may find that their parents need more help paying bills, running errands, and recognizing friends they meet on the street. As central, “straight-ahead” vision deteriorates, an older adult sacrifices their independence and it’s very common for these patients to experience increased stress or depression as a result.
 
Today, more than 15 million Americans are affected by some form of macular degeneration and approximately 2 million Americans have the advanced (End-stage) form with associated vision loss, which is the leading cause of irreversible vision loss and legal blindness in individuals over the age of 60. AMD does not cause complete blindness, but at its most aggressive, it can completely damage the macula, which is the region of the retina responsible for central, detailed vision. Although peripheral vision remains unaffected by AMD, the developing “blind spot” in central vision is not something people can see around using natural eye moments.
 
Despite the availability of new drug treatments that slow, but not stop, the progression of AMD, the number of people with the advanced form of the disease is expected to double by the year 2050.
 
Only a comprehensive dilated eye exam, usually given by an ophthalmologist, can detect macular degeneration. It’s important that caregivers ensure that their loved ones see their eye doctor at least once a year, or more frequently if AMD is progressing, to be assessed for treatment. The more common form of AMD is called dry (atrophic) AMD, which is a slower progressing form of AMD compared to wet (neovascular) AMD, which is caused by abnormal blood vessels that leak fluid or blood and damage the macula. Wet AMD is only diagnosed in 10 percent of all patients.
 
Caring for the AMD Patient
Do you know how to care for someone living with AMD? Studies find that people living with advanced AMD may need assistance nearly four hours per day, five days per week. Spouses or adult children provide 72 percent of that care.
 
Notably, the above referenced survey found that more than 1 in 3 (35%) Americans who know someone with AMD assist them frequently. But, also, that despite the high prevalence of AMD, the majority of respondents -- 66 percent -- report that they are unconfident in their ability to care for their loved one should a family member develop AMD.  Learning about AMD and different strategies to identify symptoms, treat and manage the condition benefits both the patient and their caregiver.
 
How can you help your loved one manage AMD? Here are some quick tips that you may find useful:

  1. Start a conversation – Work with your loved one to identify the questions that are important to address with a doctor about the specific diagnosis and available treatments.
  2. Commit to a healthy life - Quitting smoking, losing weight and watching your blood pressure can help reduce the risk of AMD progression; simple changes like adjusting lighting and purchasing an e-reader (that allows for larger print) can make daily life easier. Make it a family mission to live a healthier lifestyle.
  3. Safe driving – Initiate a serious conversation with your loved one and their physician about whether their vision is sufficient to make driving safe for themselves and other people on the road. Also, recognize that your loved one may experience mixed emotions about giving up driving as it signals an obvious sign of lost independence. It’s important to provide support through that transition.
  4. Research options – Despite there being no cure for AMD, it can be managed. An ophthalmologist may recommend treatments ranging from vitamins, drug or laser therapy, or, even a tiny FDA-approved telescope implant for those patients who have progressed to the most advanced form of the disease.
  5. Find support – Across the country, there are local low vision resource centers, such as Lions Club International. These organizations help people living with AMD better navigate their environment via occupational therapy and low vision assistive devices, for example. There are also national AMD awareness groups that provide education and resources, such as BrightFocus Foundation, Macular Degeneration Foundation and the National Eye Institute, to name a few. AMDAffectsMe.com is another resource that provides education about age-related macular degeneration and treatment options.

Age-related macular degeneration is common and will grow in incidence as the boomer population ages. Understanding how you can assist a loved one to best manage the condition is vital because it will enhance the family’s ability to enjoy life together.

 
Dr. Samuel Masket, founding partner of Advanced Vision Care in Los Angeles, has been practicing Ophthalmology in the Los Angeles area for over 30 years. He is a board- certified ophthalmologist and Clinical Professor of Ophthalmology, David Geffen School of Medicine, Jules Stein Eye Institute, UCLA, and specializes in complex and complicated cataract surgery.




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