Making S.A. better for people with dementia

By Lauren Caruba STAFF WRITER

By Lauren Caruba STAFF WRITERtrue

When Mary Lou Rodriguez tells people she has Alzheimer’s disease, she has come to anticipate a common response.

Often, they will turn to her husband, or her daughter, and talk with them instead.

“It’s like all of a sudden, I’m not there,” said Rodriguez, 75. “They stop looking at you. It’s like you become a nonentity.”

She knows that people do this only because they do not know how to react to her diagnosis. But their subtle responses add to the cumulation of difficulties she faces in coping with the disease.

Rodriguez stood before hundreds of people gathered at UT Health San Antonio and told them her experience with Alzheimer’s. She is still alert, she said, and can make decisions for herself. Her speech, which drew a standing ovation from a crowd that included Mayor Ron Nirenberg and District 7 Councilwoman Ana Sandoval, was part of a town hall about finding ways the city can better support people with dementia and their caregivers.

The issue will only become more urgent in the coming years, based on the demographics of San Antonio and the United States. At least 5 million people across the U.S. have Alzheimer’s and related dementias, a figure that is expected to surge to nearly 14 million by 2060, according to the Centers for

Disease Control and Prevention. Hispanics are one and a half times more likely to develop Alzheimer’s.

“The aging demographic puts us right in the bull’s eye of what’s coming, the tsunami that’s coming in dementia for our city, for our state and for our country,” William Henrich, president of UT Health San Antonio, said at the forum Thursday night.

The event builds on the institution’s recent push to holistically approach Alzheimer’s and dementia. In December 2017, it launched the Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases, which works closely with the Bar-shop Institute for Longevity and Aging Studies.

Carole White, a nursing professor at UT Health San Antonio and director of its Caring for the Caregiver program, said the discussion could mark the first step toward making San Antonio a “dementia friendly” city, a designation that is part of an international movement.

The concept involves collaboration among community stakeholders and can include initiatives such as training the employees of local businesses in dementia awareness, making transportation and public spaces accessible and ensuring emergency planning takes individuals with dementia into account.

“We’ve done a lot for physical disabilities, but that’s taken years and years,” White said. “The next problem we need to address is people living with cognitive disabilities.”

Part of that, she said, involves chipping away at discomfort in discussing the disease and interacting with those who have it, in the same way that progress has been made in reducing the stigma around cancer.

That stigma can carry over to caregivers, who can become socially isolated as they take on the responsibility of supporting and caring for family members. Kathy Beer, caregiver for her husband Tommy, who has Lewy body dementia, said during the town hall that she makes an effort to get out of the house every day, even if that means simply driving around the city.

For Rodriguez and her husband, Arturo, living for the past three years with the reality of her diagnosis has meant taking things a day at a time. Mary Lou, who is still in the earlier stages of the disease, uses a calendar in her kitchen to keep track of her days. It’s the first thing she checks in the morning and the last thing she consults at night.

She is taking two medications, donepezil and memantine, which work together to slow her memory loss. She also sees a counselor to help her work through feelings of guilt about burdening her family members, as well as the times she is “just going to burst.”

“It’s devastating. It’s hard when you’re going to lose your mind, a little bit at a time, every day, and you’re aware of it,” Mary Lou said.

Arturo, 77, said the family focuses on keeping Mary Lou socially engaged, even though her instinct at the moment is to spend more time at home. He answers his wife’s questions, no matter how many times she asks them, never saying if he has already told her the answer and she has forgotten.

“There’s only one object or goal that I have, is to make her as happy as possible,” Arturo said. lcaruba@express-news.net