For many people with dementia in Connecticut, language can be a barrier

Greenwich Time – Thursday, December 19, 2024
By Cris Villalonga-Vivoni

Unpaid bills were one of the first things Evelin Miranda’s sons noticed when their father’s memory began to decline six years ago. She and her husband, Eddie, have been married since 1980, and throughout that time, he had always taken care of the finances, so Miranda said she didn’t even notice the changes at first.

At the behest of her son, Miranda coordinated a cognitive screening for Eddie and four hours later, he was diagnosed with Alzheimer’s Disease. She was shocked by the results but knew they would handle it together. Miranda said it’s now to the point where she feels she can’t leave her husband, who is 77, alone out of fear that he will get hurt trying to do things on his own.

“I have to enjoy every minute with him, because if I don’t, I don’t want to have something that I will regret later on,” she said. “God forbid something happens to him, I can say I did what I needed to do as a wife.”

Dementia results from a variety of diseases and injuries that affect the brain. Alzheimer’s disease is the most common cause of dementia, according to the World Health Organization. In Connecticut, there are more than 76,000 people living with Alzheimer’s and 128,000 unpaid caregivers, according to the Alzheimer’s Impact Movement, a national nonprofit research and advocacy group.

A recent study from the Alzheimer’s Association suggests that the number of people with clinical Alzheimer’s disease is expected to rise to about 14 million in 2060 across the U.S., with the largest increases in racial and ethnic minority groups.

Communication for patients with dementia is difficult, at best. Add in several language barriers that persist among these patients, caregivers, and medical providers, and offering adequate care can be daunting.

The number of people experiencing cognitive decline has consistently increased as they live longer lives, said Dr. Stephanie Towns, associate professor and training director of neuropsychology at the Yale School of Medicine. There’s a natural pace at which a person’s cognition declines but life habits, health and other social factors can accelerate it.

Towns said it’s still not known why some communities are more prone to dementia and Alzheimer’s. There are some influencing factors — access to care, social isolation, delays in diagnosis and underrepresentation in research and treatment trials.

When assessing cognition, language and cultural understanding can be challenging for both the patient and provider, Towns said.

“In a perfect world, if I have someone who’s bilingual, I would like to do their formal language testing in both languages, and so sometimes I can’t provide them with the level of care I would like, because they’ve declined an interpreter, or because we can’t find an interpreter in in the appropriate language, which has also happened,” Towns said.

Easy to misdiagnose

The different forms of dementia can have several unique manifestations and stages that impact communication, said Dr. Eilon Caspi, gerantologist and dementia behavior specialist.

As the disease progresses, Caspi said there are changes in how patients organize and express their thoughts, which often “need specialized deciphering” and lead to overall communication barriers even before the second language is a factor.

“I know of multiple situations where residents became extremely distressed and frustrated and were labeled aggressive, but when you look it had to do with language barrier,” Caspi said. “They simply couldn’t understand what’s going on.”

On the provider side, language barriers can impact their ability to fully understand the context of a patient’s experience, which can run the risk of leading to a misdiagnosis, Dr. Alice Perez, a licensed neuropsychologist and assistant neurology professor at Yale School of Medicine.

Perez said she often works with patients who were previously misdiagnosed due to a language or cultural misunderstanding. She recently worked with a patient who was diagnosed with mild cognitive impairment after her doctor learned that her daughter runs the finances and cooks for her. Perez said she found that the patient was doing great cognitively after a screening. She also learned that the daughter was helping because it was customary in their culture for their children to care for their parents after a certain age.

Cultural stigmas surrounding mental health and cognitive decline can also make it difficult to provide screenings and care, Perez said. She said some patients have an idea of what mental health looks like but don’t believe they are experiencing those same issues despite having clinical symptoms.

It takes Perez a lot of time to build rapport and trust with patients during a screening to identify the cause of their cognitive decline. Her goal is to get to the “nitty gritty” of the patient’s life, values and culture to ensure she has a full understanding of who they are and what leads them to her office.

“Our field, neuropsychology, it’s really interesting in the sense where we really try to understand other people’s culture because it’s so important in our line of work when diagnosing,” Perez said.

Interpreters are a good alternative to minimize misunderstandings; however, an ongoing national shortage is causing scheduling difficulties, Perez said.

Even when they can conduct a thorough screening, Perez said there’s a lack of normative, comparative data on populations that are non-white, non-American and non-English speaking.

“We need better ways to be able to compare the person that we’re seeing based off their race, their education, their ethnicity, their culture, to get better results. More accurate results when we are testing them for something like dementia,” Perez said.

Long-term care

Although there are many accessible ways to address language barriers, some long-term care communities don’t always have the best communication options available, said Mairead Painter, the state long-term care ombudsman in the Department of Aging and Disability Services.

This can result in a resident’s daily needs remaining unmet or having unintended consequences, like worsening health conditions and social isolation, she said.

At the same time, Caspi said nursing homes are also experiencing an “unprecedented workforce crisis” with shortages and under-trained staff in many care facilities across the country. He said poor staffing levels “set the stage” for a direct impact on quality of care for residents with dementia. He said lack of training may result in providers stigmatizing patients with labels. In reality, Caspi said providers must look at the whole person to understand them and provide adequate care.

“In this environment of staff shortages, lack of training and lack of supportive guidance for managers, this is really a recipe for a lot of problems. Then you overlay on top of that the fact that a lot of the Medicare staff are immigrants, dedicated, caring, compassionate people, but working often in a broken system,” Caspi said.

In Connecticut facilities, Painter said she’s seen care team members in nursing homes working to understand and use translation technology when necessary, including language lines and visual aids. She said the nursing homes are working to rework some of the marketing information to ensure it is accurately translated into multiple languages.

Some long-term care facilities don’t have English as the primary spoken language because they are located in culturally diverse neighborhoods and are staffed by community members. Painter said having the community brought to the residents can be extremely beneficial because not only are they meeting the language needs, they are also addressing the cultural ones.

“For the individuals that live there, it’s very supportive. They feel like they’re still part of their greater community. It offers them connection,” Painter said. “We really want inclusive communities for people as they as they age, as they face any type of disability, and we want to be able to encourage them to speak up, speak out and make their needs known. I think that’s easier for them when they feel that ease of communication and connection to people.”

Watching the impact

Miranda’s husband is not the only one in her family to develop dementia. She said her father developed dementia and passed away in 2014. Meanwhile, Eddie’s sister was diagnosed around the same time he was, but she was 64 at the time.

She said her husband struggles to follow one-step instructions, gets lost in spaces he was once familiar with and is experiencing involuntary spasms. Eddie also only speaks Spanish now, although he’s been bilingual for years. She’s found workarounds, like encouraging prompts and asking small questions, to promote his cognitive thinking and independence, but it’s becoming more challenging each day.

Miranda said they hadn’t faced any barriers throughout his disease, mainly because of her deep understanding of the medical field after a 25-year career as a nurse in Connecticut and working with children diagnosed with autism and other behavioral health needs and their families. Her family members, on the other hand, faced several issues trying to access resources for their loved ones. She said their doctors often left them with basic information and couldn’t provide further explanation because of the language barrier. They would then turn to Miranda for advice or ideas.

She relied on a lot of books to help her in the early days of Eddie’s diagnosis, which Miranda said greatly helped her mentally and physically prepare. However, she said the books aren’t available in languages other than English. She also found several English-speaking support groups, but no groups for other languages. She said more educational services or supports should be available in multiple languages to ensure anyone needing help can have access to it.

“I think they should educate more. Like how they have nurses aides, they should have people like that [go] out to the home and educate some of the caregivers in the families,” Miranda said. “If they can have more people like that … that will be so nice, and knowing that they’re not alone”

Maria Canales, community education and board member for the Alzheimer’s Association, said she faced her own language barriers while trying to help her mom get care. She said her mother was never officially diagnosed with Alzheimer’s but struggled after having a major stroke and aphasia. Her mother was Spanish-speaking only and she said it felt that doctors would dismiss her needs as a result of the communication barrier or were overtly rude to them.

In her work, Canales said she also met many people who faced similar situations and felt dismissed by their doctors due to a language barrier. She encourages patients to become self-advocates — ask questions, participate in clinical trials and seek a second opinion if needed. It would easier, she said, if the information is readily available in a patient or caregiver’s native language.

She said more providers also need more education on how to work with culturally diverse patients and what is available for them. She thinks they need to spend time ensuring patients understand their treatment plan and why it’s critical to follow.

“We are trying to help the system and improve it, but in the meantime, don’t be afraid to ask the questions. If you have to ask it in English and put it in Google Translate for them to hear it, then do that,” Canales said. “Your best guide or your best tool for better health is education.”

Access this article at its original source.