Language and Culture in the Care of People Living with Dementia

MCL Backstory

By Alma Hernandez De Jesus

Primary care providers (PCP) are overwhelmed. There are not enough to meet patient demand, and they do not have time to attend to the needs of their large patient panels. These challenges are particularly acute when providers care for patients whose language or culture differs from their own. As care crosses language and culture, our healthcare system’s struggles with equity come into clear focus. This post describes research that illustrates the nature and extent of these struggles.

Our study interviewed PCP who care for people living with dementia. Clinicians described how they served patients by working with interpreters and providing language-concordant resources. They also described their own awareness that those strategies were insufficient to provide proper care. Language differences go hand-in-hand with cultural differences. Many patients and providers struggle to bridge the differences and challenges they both face.

At UCSF, I am a clinical research coordinator conducting qualitative research on primary care and dementia for principal investigator Alissa Bernstein Sideman. For one project, Dr. Sideman interviewed 35 PCP across California about their experiences caring for people with dementia. To analyze the interview data, I coded for themes and wrote analytic memos that described key findings. Among those key findings: PCP struggled to care for people from underserved monolingual communities.

Another project led by Dr. Sideman connected PCP to experts in dementia care. Project ECHO is a free program that includes a didactic component. Neurologists, neuropsychologists, nurses, and social workers teach PCP about the medical, psychological, and social complexities of dementia. For example, the experts might talk about the biology and symptoms of dementia or they might focus on how to manage (the few) available treatments for dementia.

Project ECHO also features patient case presentations. This is a chance for a PCP to describe a particular patient living with dementia on their care panel. Dementia specialists and other PCP provide tips and advice on how to address challenges. My role on ECHO was to take notes during these case discussions. I documented the questions, recommendations, and advice PCP and experts exchanged during each case.

In the clinician interviews and during Project ECHO, I noticed that PCP and their healthcare teams described similar concerns with language and culture. It was obvious that language and culture are struggles across the healthcare system.

In the interviews, some PCP said that interpreters can use their common language to build trust with patients. But language remains a barrier when it comes to building trust between patients and the PCP. And interpreters who are linguistically fluent may not be fully aware of differences in cultural backgrounds. Such cultural differences exist even within a single language group. So interpreters may speak the right language to communicate with patients, but they may have trouble sustaining cultural rapport. They may need cultural sensitivity training just as much as the PCP who do not speak the patients’ language.

In our interviews, PCP reported that family members sometimes serve as translators. This can pose a new set of challenges. Family translators may fail to fully communicate what the clinician wants to express. They may not understand medical terms. Or they may be uncomfortable or otherwise able to communicate to the patient all the PCP has to say. Overall, PCP we spoke with felt interpreters and other approaches to translation end up being insufficient to address the language and culture obstacles to dementia care in our current healthcare system.

Dr. Blue is a PCP who recently started practicing after completing a master’s in public health. She wanted to provide care with a social justice and public health approach. This has proven difficult. She has struggled to coordinate the care she provides with the resources needed in her patients’ community. She doesn’t know what resources are available. She relies on social workers and others to provide cultural and language-concordant information for her patients. To provide optimal care, Dr. Blue believes providers have to learn from the community they serve. They need to understand the different backgrounds of people in the communities, and they need resources in appropriate languages.

A pandemic really highlights many challenges. I have many patients who are taking two to four busses to get to me now. I think about that. How painful that would be and frustrating…how are they managing all of those pieces. I have families who don't speak the languages that we typically support. So, English, Spanish, Chinese are our services. Trying to get a patient in for neuropsych who speaks Tagalog was a huge challenge because they were hard of hearing. You couldn't use a phone interpreter to be able to do that.

Another PCP we interviewed, Dr. Bell, has been working at the same community health clinic for over 30 years and is fully immersed in the community where her patients reside. She has been working to teach other providers about driving safety among older patients with cognitive issues. This reflects her interest in public health. It also reflects her personal experience of the toll of dementia on her mother and on her sister, who is her mother’s caregiver. Her patient population includes many Indochinese refugees and immigrants. She sees a cultural barrier between Vietnamese interpreters who are working with ethnically Chinese patients. She notices a disconnect when discussing dementia. The interpreters can translate the language, but Dr. Bell sees a need for interpreters and providers who are sensitive to the cultural issues surrounding dementia in this community.

Even with my Vietnamese interpreter, some of the Vietnamese are ethnic Chinese. And so, Vietnamese is their second language. And so, yeah I don't know if I'm emphasizing this enough, but there are just considerable...Even in what I consider a really well-run culturally sensitive setting where we've got stable interpretation and long-term relationships, there continues to be some...subtle kind of cultural and linguistic barriers even within that.

In Project ECHO I saw language and cultural barriers arise when PCP and the care team tried to provide patients with information and resources about dementia care. In one ECHO session, the discussion focused on end-of-life, palliative care and hospice. PCP were concerned about a patient who was Cantonese-speaking. The family of the patient was hesitant to use resources that were not available in their language. They also expressed that in their culture, the family – not a hospice – cares for the elder until their end of life.

Many Project ECHO PCP expressed the concern that lack of resources available in peoples’ native languages made it difficult for families to learn about end-of-life care and get caregiver support. The Alzheimer Association and other organizations translate some materials, but many languages remain uncovered. And there is still work to be done to make the resources culturally appropriate. Monolingual patients from underserved communities may find that few providers speak their language and few resources are available in their language. Even when the language gap can be bridged, the cultural divide may persist. Patients from smaller language groups and cultural communities cannot receive the quality care they need – gaps that drive profound inequities in healthcare.

Based on my experience in these studies, I found a major need for more language concordance and cultural humility to provide the best care for patients who have been historically marginalized and continue to be treated inequitably to this day. The pandemic exacerbated these issues, but many providers had already been struggling with them and trying to address them. Language concordance is needed across PCP and specialists working with dementia patients to make it easier on them and their families.

Language and cultural differences have always been a challenge in healthcare. Many have tackled these issues. Progress is slow, and there are no ideal solutions. An ultimate solution may be to dramatically expand the number of clinicians from diverse languages and cultures. This diverse workforce would then need to be properly compensated and supported to serve communities where their linguistic and cultural knowledge are most needed. This type of structural change will help provide care for all elders.

Today, clinicians are concerned about how to care for elders in communities that are reluctant to talk about dementia or age-related changes in cognition. My research experience suggests that the healthcare system may need to do a better job of listening.