Program helps people who have visual problems that can’t be corrected

By John Addyman


Here’s the good news: if you’re 60 or over, you probably have years and years of good health ahead of you.

But here’s a bit of sad news: a little more than one in eight of your friends and family members will suffer significant vision loss — and the number increases with age.

What if the person affected is you?

Losing your sight is a blow. It can come quickly, or take time — the dying of the light.

What that does to your psyche, your soul, can adversely affect how you live.

There are four main reasons your vision may deteriorate:

• Cataract — when the lens in your eye becomes foggy or opaque and your vision blurs. This is correctible for many, but not all.

• Diabetic retinopathy — if you have diabetes, you’re at higher risk of blindness. Retinopathy causes large blind spots in your vision.

• Glaucoma — is damage to your optic nerve because of increased pressure within your eye. You lose your peripheral vision and end up with tunnel vision and can become blind. It is treatable when caught early.

• Macular degeneration — is the leading cause of blindness in older adults. It occurs when the retina inside your eye becomes damaged. Most people with this condition have the “dry” form of it, where the retina layer thins; in the “wet” version, there’s bleeding inside your eye. This condition takes away your central vision.

Accidents or stroke can also take your vision away.

There are two types of people with vision problems — those who know they have a problem and those who don’t know yet.

Silvia Sorensen is an associate professor at the Warner School of Education and Human Development at the University of Rochester. She has several active research projects focusing on the effects of vision loss. And she has some advice and an offer to help.

“The first thing someone should do if they feel they have vision problems is go to their optometrist,” she said. “Most people have an optometrist. They should go to their optometrists and have their vision checked and see if there’s a correction that’s possible: that’s the first step.

“If they find they have a vision loss that can’t be corrected [after a diagnosis by an ophthalmologist], that’s the population we’re aiming for in Project REBUILD: people who have visual problems that can’t be corrected. They need to explore the medical options first, but can also call us for support in the emotional fallout of that.

“A lot of times, people who realize they have a disease that will bring with it visual loss in the future get very upset. It’s like a cancer diagnosis, in that you’re faced with a very different future than what you were expecting, and you have to cope with that and adjust to that. It takes awhile for people to go through that process.”

Knowing you’re going to lose your sight can bring on a level of depression that takes the life out of you, changes you in significant ways. About 30 percent of the people who have vision loss suffer depression or depression symptoms, directly affecting their quality of life.

Project REBUILD is an outreach research effort by the University of Rochester, the Flaum Eye Institute and the Association of the Blind and Visually Impaired. Sorensen is the project director at the UofR.

Simply put, Project REBUILD helps people 60 years of age and older to cope with vision loss, teaches them how to get back much of their lives and stay independent. And it’s a free service, through a grant from the Greater Rochester Health Foundation.

When you sign up for REBUILD, you’ll attend four vision education classes.

“The charge of REBUILD is to help older adults with vision loss get some skills and some exposure to resources that will help them reduce some depression symptoms or prevent depression,” Sorensen said. “What we try to do is expose people in four classes to all the different resources and knowledge they need to cope with the vision loss.”

Her research shows that people who lose their vision and don’t get the kind of help REBUILD offers can suffer deepening depression.

A crucial part of REBUILD is six personal, in-home sessions where a resilience-building coach works with the visually impaired person, one-on-one.

Sorensen stresses the emphasis here is to build problem-solving skills.

“We start with pretty straightforward kinds of problems like, ‘I would like to learn about the news every day but I can no longer read the paper. What can I do?’ We teach people to define their problem really well.

“For example, if someone says, ‘I’m lonely,’ that is very ill-defined. We try to get them to define a problem to say something like, ‘Well, I don’t see my friends enough.’ Then we try to help them set a goal. For one person, the goal might be, ‘I want to see my friends twice a week.’ For another person, the goal might be, ‘I want to see my friend once a month.’ It’s the person’s own goals that are important.

“Then we help them brainstorm different solutions on how they can meet that goal,” said Sorensen. “So, one person might say, ‘My friends meet every week at this pub. I’d like to get there.’ So then we try to brainstorm different ways to get there. One could be, someone picks you up, another one could be, you take a cab, another one could be, you take a bus, or you take a cab one way and somebody takes you home the other way. There are different solutions.”

At the end of the sessions, the resilience coaches give homework. “Now that you’ve worked through this problem, why don’t you take this action plan that we’ve developed and try it out — spend the next week trying to put this into action and see if it works, and if it doesn’t work, we’ll explore why not and figure out what does work,” Sorensen said.

The coaching is all done in the home. “We also try to think about problems that might come up in the future,” she said. “So, let’s say somebody says, ‘I know I can’t live in this house much longer and I need to think about alternatives,’ so then we help them do that. There’s a real emphasis on building resilience, which is why we call it Project REBUILD.”

More than 100 Rochester area people have been helped through REBUILD.

Do you know someone who might benefit from this? You can reach Project REBUILD at 585-371-8173.