Drs Eleonora M. Lad, David R. Lally, Jayanth Sridhar, and Nancy M. Holekamp discuss numerous ways geographic atrophy can impact the caregiver’s quality of life.
Eleonora M. Lad, MD, PhD: We talked a lot about the patient’s point of view, but what about the impact of geographic atrophy [GA] on caregivers and their quality of life?
David R. Lally, MD: It’s tough for all the caregivers of these types of patients. We talked about the most practical one would be when the patient loses their ability to drive, that affects their ability to go to the grocery store and get their weekly groceries, and it affects the ability for these patients to make their doctor appointments. This is an older population, so typically they have comorbidities or other medical health issues at that age, requiring monitoring and treatment by doctors, besides their macular degeneration issue, and so now, it’s often up to the caregiver to provide that transportation for the patient. The effects for the family extend far beyond the patient, to the immediate care providers.
Jayanth Sridhar, MD: One of the things that is a struggle sometimes is getting the caregiver, or the person who’s coming with that patient to that visit, to be aligned with the patient in terms of what’s going on, because they’re not experiencing the same things. That’s where we could really step in. Sometimes the patient comes in with their son or daughter, family member, and we say, “Things look stable.” And they say, “Look, Mom and Dad, everything’s fine. You’ve been complaining about all these things, you’re wrong, everything’s fine.” I think bridging that gap is important and sometimes saying, “They’re not off the reservation here. They’re right, they are losing some function over time. These are the things we can do to help.” Getting those two aligned is helpful. There may be a grieving component for any child or caregiver who’s taking care of someone else who’s declining, and they must understand what’s ahead in the future and how they can prepare their lives.
Eleonora M. Lad, MD, PhD: Communication is so important. I couldn’t agree more.
Nancy M. Holekamp, MD, FASRS: Well, you took the words right out of my mouth. My pearl was going to be, if the patient comes in alone, I always ask who’s with them today? And can they come in and be part of the conversation? Because it’s so important to educate everybody around this concept of GA.
Transcript edited for clarity