'The longest goodbye': Why there may be higher rates of Alzheimer's in the Hispanic community

More than 400,000 people in the state of Texas are currently living with some form of dementia. Experts said people from Hispanic and Latino communities are at a higher risk, being 1.5 times more likely to develop the disease than white Americans.

Alzheimer's is the most common type of dementia. According to the Centers for Disease Control and Prevention (CDC), it is a progressive disease beginning with mild memory loss and possibly leading to loss of the ability to carry on a conversation and respond to the environment. It involves parts of the brain that control thought, memory and language.

Currently, there is no cure. But many experts are hopeful that they could soon see a major breakthrough in medicine. In the meantime, there are ways to help patients manage their symptoms and improve their quality of life.

"One of the things we always focus on is risk reduction, such as managing your diet, exercising, and being socially active. All of these activities help us reduce the risk and the way the disease progresses," said Jorge Olvera, director of diversity outreach at the Alzheimer's Association Houston and Southeast Texas chapter.

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A Hispanic family's story

Emma Banda will always be remembered as someone who loved serving others and brought joy through her laughter and hugs. The 76-year-old spent most of her life in Santa Rosa, Texas and dedicated four decades as an educator for the Head Start program.

"She wanted to ensure every child who was a migrant was provided the education they deserved and given the opportunity to have a better future. I think her childhood is what drove that motivation, because she wasn't able to go to college after she finished school," said Emma's daughter, Angie Banda-Endsley

Angie moved to the Houston area from Santa Rosa 17 years ago, but still kept in daily communication with her mother over the phone. She didn't notice anything was wrong until Emma was admitted to the hospital about three years ago.

"After she had a wellness check-up, her doctor determined she just wasn't cognitively there," Angie recalled. "I went to visit her and she was just a different person. She knew who I was, but didn't. She just wasn't my mom."

Emma was ultimately diagnosed with vascular dementia. Angie said she was told by doctors that her mother was no longer eating or drinking on her own, leading her to make the decision to move Emma in with her and become her full-time caretaker.

Up until that point, Angie said their family didn't know much about the disease, nor did they feel like they had a place to reach out for help. Her mom's laughter was replaced with angry outbursts and uncontrollable crying. Her hugs turned into aggression and confusion.

"I did everything I could to get my mom back. I couldn't keep up with her needs. Not only did she start to lose her memory, but she became very agitated towards me and her grandchildren. She wasn't sleeping at night and I needed to make sure she wouldn't leave the house in the middle of the night. It was affecting my health and the relationships in my family," she said.

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Emma passed away on February 13th while staying at a personal care home. In her final days, Angie said she was bedridden, non-communicative, and no longer eating or drinking. Her death brought a mix of emotions for their family, ranging from guilt to relief.

Overall, they were grateful that she was no longer suffering. Many people in the dementia community call the period after symptoms get severe "the longest goodbye."

Reflecting on the past few years, Angie believes the cultural stigma that exists for mental health in the Hispanic and Latino communities contributed to the experience that she and her mom had with dementia. She said it's possible Emma kept some of her symptoms to herself, as their family didn't know much about the disease beforehand.

"I think she might've been embarrassed and had a lot of pride, because Hispanic women are supposed to be able to do it all," said Angie. "Growing up, we didn't talk about our mental health. We were told that it would go away and not to worry about it. You just kept it to yourself and that's a generational curse that impacts generations ahead of us."

Angie will be graduating later this year with a Master's degree in clinical mental health counseling from Houston Christian University. Although she chose her major before her mother's diagnosis, she said she'll be using her training to help others going through similar situations.

"I hope to normalize mental health and get rid of the stigma that's associated with getting help when you need it. There's such a need for bilingual counselors and there's not enough of us," she said. "When I meet someone that's gone through the same thing, I feel a sense of relief. I don't feel as if I'm alone on that island anymore. There's an unspoken feeling because they know the weight of what I'm carrying."

The role of a caretaker

Advocates said dementia is a disease that often impacts the entire family, especially those who become caretakers. It can create stressors and strains on other relationships.

"If I am a caregiver and I have a spouse, I have to take time away from my spouse in order to spend time with my loved one who I need to care for. That creates kind of a wedge. It can also happen with kids. I may not have the time or energy to spend with my young child if I need to look after my mom or dad," said Olvera.

Olvera said one of the keys to success in caretaking is when family members delegate roles and divide responsibilities, such as planning meals, going to doctor's appointments, bathing, etc.

"We encourage young family members to be part of the caring and the decision-making process. Let them know that they may have new responsibilities, because they're part of the team," he said.

Data on Alzheimer's in Hispanic communities

According to the 2023 Alzheimer's Disease Facts and Figures report, Hispanic Americans are 1.5 times more likely to develop Alzheimer's or another form of dementia than white Americans. Approximately 13 percent of Hispanic Americans who are 65 years or older are living with Alzheimer's or another disease under the dementia umbrella.

Research points to a number of socioeconomic factors that contribute to these disparities. One, Hispanic Americans are more likely than white Americans to have high blood pressure and diabetes, as well as heart disease and stroke. They are also more at risk to barriers in accessing preventative services such as exercise programs, early diagnosis, and medication.

"Minority communities are often doing more arduous work throughout their lifetime. They're more exposed to the elements, working decades as a roofer, construction worker, or any of those outdoor laborious jobs. It puts them at risk for cancer and other chronic illnesses that affect their risk for Alzheimer's. One thing we always say is what's good for your heart is good for your brain, because it's the motor that pumps blood to your brain," said Olvera.

Culture stigmas and misinformation can also play a role in these numbers, preventing patients from getting checked and family members from recognizing the warning signs.

"Part of it is a bias, a common belief that Alzheimer's and dementia is part of the aging process. Unfortunately, that's not right. Your skin wrinkling is part of the aging process. Having cognitive impairment is not something you can generalize," said Olvera.

He added, "Another factor that plays a role in people not identifying it early is oftentimes, the professionals don't have the proper education or cultural knowledge of how to address the disease in a specific community. Part of the work we do is in advocating with physicians, making sure they're aware of what to look out for, how to have those conversations, giving value to people's cultural beliefs while making space for science inside of the exam room."

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The Alzheimer's Association projects that the number of elderly people in Hispanic and Latino communities with some form of dementia could increase more than six-fold, from nearly 200,000 today to as many as 1.3 million by the year 2050.

Experts said Hispanics and Latinos are underrepresented in clinical trials. Without appropriate participation, it is difficult for medical professionals to understand how racial and ethnic backgrounds could play a role in the efficacy and safety of potentially new treatments.

"We are encouraging the community to get involved to see how we can better detect it and how we can better serve these communities. Treatment won't be equitable to everyone, if they're not represented in the clinical trials," said Olvera.

Resources and Upcoming Events

The Alzheimer's Association Houston and Southeast Texas offers a wide array of resources and support for people living with the disease and their families. They offer educational presentations in the community, support groups, and a 24/7 hotline at (800) 272-3900.

"We have safe spaces. For the Hispanic and Latino community, there are Spanish-support groups they can attend. There are support groups for men, women, and LGBTQ+ communities, where they can share their story and feel like the people in the room will understand," said Olvera.

For anyone living with Alzheimer's, caregivers, and health volunteers who would like to participate in trials to help advance research for the disease, visit the Alzheimer's Association TrialMatch website.

The Alzheimer's Association Houston and Southeast Texas chapter will be hosting the Houston Walk to End Alzheimer's on November 4th at the University of Houston at Lynn Eusan Park. The event opens at 8 a.m. The opening ceremony begins at 9:15 a.m. and the walk will take off at 9:30 a.m.

A deeper look

For a more extensive look into this subject, ABC Owned Television Stations produced an hour-long special in partnership with ABC News called "Our America: Unforgettable." It explores what life is like for families facing Alzheimer's, as well as the alarming data of the disease through a Hispanic and Latino lens.

The special is airing on ABC13 on Saturday, October 14th at 11:35 p.m. You can also watch it online or wherever you stream (Fire TV, Android TV, Apple TV, and Roku).