Community discusses caring approach for people living with dementia, caregivers

William Henrich, Carole White, Mary Lou Rodriguez and Ron Nirenberg
At the dementia-friendly town hall are (left to right) UT Health San Antonio President William L. Henrich, M.D., MACP; Carole White, Ph.D., RN, UT Health San Antonio professor of nursing; Mary Lou Rodriguez, who is living with Alzheimer's disease; and San Antonio Mayor Ron Nirenberg.

SAN ANTONIO (Oct. 22, 2018) ― More than 250 people attended a community town hall Oct. 4 to raise awareness about dementia, family caregiving and how San Antonio can become a dementia-friendly community.

UT Health San Antonio hosted the town hall. President William L. Henrich, M.D., MACP, said San Antonio’s high number of retirees puts the city in the bull’s eye of an “Alzheimer’s tsunami.” He explained that when longtime UT Health San Antonio friend and supporter Glenn Biggs came to him a few years ago with an Alzheimer’s diagnosis, it spurred President Henrich to lead the university in raising more than $50 million to open the Glenn Biggs Institute for Alzheimer’s & Neurodegenerative Diseases and in developing the Caring for the Caregiver program.

Over the last three years, UT Health San Antonio Professor Carole White, Ph.D., RN, and her team have been focused on providing education and support for family caregivers through the Caring for the Caregiver program in the School of Nursing. The program, which is affiliated with the Biggs Institute, brings together individuals, governmental agencies and community organizations to provide training, support and resources for caregivers and their loved ones.

The institute and the Caring for the Caregiver program provide family-centered, evidence-based care. The institute will soon begin conducting clinical trials to improve the diagnosis and treatment of Alzheimer’s and other neurodegenerative disease. The Caring for the Caregiver program is also conducting research to build evidence for best practices in supporting family caregivers.

At the town hall, Dr. White defined dementia is “a change in the brain that affects normal brain function.

“More than 55,000 people are affected by Alzheimer’s disease in South Texas,” Dr. White said. “For each person affected there are about three others who are involved as caregivers. With San Antonio being home to many retired people, including military retirees, we want to raise awareness of Alzheimer’s disease and other forms of dementia and the needs of their caregivers.”

One of the featured speakers was Mary Lou Rodriguez, a former city of San Antonio employee who is living with dementia.

“Three years ago, I noticed that I was no longer able to remember dates and other details,” she said. This was frustrating to her because her career involved coordinating the many details of special events. As her disease progressed, she was referred to the Biggs Institute for medical care.

“I am still alert, and I can still make suggestions to family members,” she said. However, she finds herself repeating things more often now. To help with forgetfulness she checks the family calendar every morning and every evening to help her keep track of what is scheduled for each day.

“I have always loved being in my home, but now I don’t want to go out as often. But with my family’s encouragement, I am still doing some social engagements. I wanted to come here to this town hall to share my story,” she said. “I want to create awareness and provide information on how best to interact with a person with dementia.”

“As dementia progresses, people living with dementia and their caregivers often feel isolated and misunderstood. Some members of the community may not understand the behavior of those with dementia and are not certain how to interact with them or feel their behavior in public is inappropriate,” White said.

Kathy Beer, who is caring for her husband who has Alzheimer’s, discussed how isolating it can be as a caregiver. “I was in sales and marketing for health care and I lived with my husband in the Hill Country,” she said. As his disease worsened, she said, “We moved from Pipe Creek to San Antonio. We left behind our home, our friends, our church and our church family – our whole support team,” she said.

“I started going to a counselor to help me figure this out. He suggested going to a support group. I’ve made some wonderful friends in a very short period of time,” she said. She makes plans to get out of the house every day for social interaction.

“Dementia is terrible and takes a little bit away every day, but it’s nothing to be afraid of. I have the honor of taking care of my husband in the best way possible. It’s a blessing in disguise, but it’s still a blessing,” Beer said.

Becoming a dementia-friendly city is a goal that city of San Antonio Mayor Ron Nirenberg would like to pursue. “Becoming a Dementia-Friendly City is not only the right thing to do but it will make us a more compassionate city,” he said. “Our challenge is to become the second Dementia-Friendly City in Texas.”

Thanks to the Caring for the Caregiver program, many community groups are already discussing it.

Dementia Friendly America is a national network of communities, organizations and individuals seeking to ensure that cities across the U.S. are equipped to support people living with dementia and their caregivers. Dementia-friendly communities foster the ability of people living with dementia to remain in community and engage and thrive in day-to-day living, according to the DFA website.

“A dementia-friendly city is place or culture in which those living with cognitive decline and their caregivers can be supported and included in society,” Dr. White said.

To explore this idea, Jan Dougherty with Dementia Friendly Tempe led table discussions to explore how ordinary citizens and organized groups can reduce stigma and social isolation.

Some of the ideas included:

– Educating people who deal with the public, such as cashiers, librarians, police officers and emergency medical technicians, to recognize the signs of dementia so that they can assist patients and their caregivers.

– Reaching out through churches and neighborhood organizations to families of persons living with dementia to provide relief and support, ensuring they can still be active in their communities.

– Continuing to develop and offer “Memory Cafés” and other places where those with dementia and their caregivers can meet for support. (Through a partnership with the city of San Antonio, the Caring for the Caregiver program is offering Memory Cafés at several senior centers.)

– Educating the medical community about resources available to caregivers when a loved one is diagnosed with dementia.

– Reach out to families who have a loved one with dementia during the holidays to help them feel included.

– Provide programs in schools and to parent groups explaining how Alzheimer’s disease and dementia can affect grandparents and people in their neighborhood to dispel fear and encourage support for family members and neighbors.

“There are many different types of dementia and every person living with dementia is unique,” said Dr. Seshadri, “We all need to be educated and empowered about what people with dementia and caregivers need to affirm the rights of every person living with dementia so that they can continue making the contributions that only they can make.”

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The University of Texas Health Science Center at San Antonio, now called UT Health San Antonio®, is one of the country’s leading health sciences universities. With missions of teaching, research, healing and community engagement, its schools of medicine, nursing, dentistry, health professions and graduate biomedical sciences have produced 35,850 alumni who are leading change, advancing their fields and renewing hope for patients and their families throughout South Texas and the world. To learn about the many ways “We make lives better®,” visit www.uthscsa.edu.

 



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