Postdoc researcher wrote a book about how dementia influences the multilingual experience
Carolin Schneider sees different languages as portals to entirely new realms. When you enter these spaces, you learn cultures and mindsets that enrich your own.
By this definition, Schneider, a linguistic postdoctoral researcher at the University of Duisburg-Essen, is a world traveler. She speaks German, English, and Spanish, plus some French, Dutch, and Turkish. She can also translate Latin.
“What really fascinates me about language or languages is how we as humans give meaning to language by using it, and how it changes over time, and how we gesture, how we use our facial expressions, whether we shift our pitch — everything we do to communicate,” Schneider says.
Most recently, she explored how dementia impacts that meaning-making process for bilingual Central Floridians, and this undertaking culminated in her recently-released book, An Ethno-Social Approach to Code Choice in Bilinguals Living with Alzheimer’s, published by Palgrave Macmillan.
This particular topic became her focal point after she had an acquaintance ask her how he should address his parents, who had dementia and were bilingual. He didn’t know which language would work best, or why they switched between English and Spanish.
“I’m going to read up on that and have an answer next week,” she’d told him then.
But a week passed, and she still did not have satisfactory answers. She dedicated the next seven years, and her PhD, to finding them.
Schneider, who lives in Germany, said that finding the Alzheimer’s & Dementia Resource Center was “the best coincidence.”
She’d cold-called the nonprofit organization, explaining her research, and Executive Director Edith Gendron, then Chief Operating Officer, told her to email when she was in town, and that they’d arrange a meeting.
That promise gave Schneider the confidence she needed to book her plane ticket, and, six months later, she began shadowing Gendron.
“I followed Edith around and met all kinds of people and stakeholders who are somehow related to the topic of aging and dementia,”
She conducted 24 interviews, and discovered that the first-learned language is not always the most salient.
“It highly depends on how you relate to your languages,” she said. “There’s a lot of psychology behind it — how you live with and how you feel about your languages, how you store your languages in your mind and how you use them when you have dementia.”
Her dementia-related research continues in a new project she has dubbed “Dinnertime Corpus” — a longitudinal study that examines how mealtime conversational patterns evolve and how the experiences for monolingual and multilingual speakers compare over time.
She’ll return to Central Florida this September, and will host a Question and Answer session then (more information coming soon).
For now though, you can email Schneider and she will answer your questions (and can even send electronic PDFs of her book). You can also grab a copy in the Little Free Library. To support her work, call your local library and ask that they purchase a copy, and consider participating in her new study.
You can also consider tuning in to International Intersections — a virtual roundtable that includes stakeholders from Canada, the US, UK, Spain, Germany, Taiwan, and China, who are all invested in dementia research. The next session is July 10, at 8:00 a.m.
“Essentially we are looking at different communication phenomena and how they work across cultures,” Schneider says.
Schneider describes her work in her own words, below.
THE POWER OF LANGUAGE
Communication – and with it, language – is the cornerstone of social interaction. It serves as a powerful tool allowing us to connect with others, express our thoughts and emotions, and share our experience. Language is intimately tied to self-expression. The words we choose, the tone we use, and the way we construct sentences all contribute to how we present ourselves to the world. Our linguistic choices reflect our personality, values, and cultural background: Our words help shape our identity and influence how others see us.
In the context of dementia, meaningful social interactions are vital for maintaining identity, selfhood, and well-being. Research on communication and conversational practices as one major element of care has investigated both care homes and homebound care and the results are no surprise: the way we speak to each other, especially with someone who is living with dementia, makes a difference.
INSIGHT FROM THE BILIAD PROJECT
In our increasing multilingual world, there’s a need for insights into care situations involving more than one language, both in professional and family settings, to understand and to ensure meaningful communication throughout thE progression of the disease – in all languages. This was the starting point of my research project BiLiAD in which I explore individuals living with Alzheimer’s, who speak both Spanish and English. Back in 2018 and 2019 I recorded narrative interviews with people living with dementia and their relatives with the primary goals to answer some of the many unanswered questions bilingual families face after a diagnosis of dementia. What may communication in two languages look like when communicational abilities are changing? In my book, for instance, I show how people decide which language to use in different situations (for example when is Spanish or English expected or needed?). I am also investigating how it helps when someone answers in the same language they were asked in. But I am also looking at what happens when someone answers in a different language, even after being asked in the same language a few times. All of this helps us see what works best for meaningful communication. Further results show that when people living with the dementia are given the chance to speak both languages or their preferred language, their resourceful use of humor, for instance through ambiguity or wordplays, helps them participate fully in social interactions and strengthen social bonds – crucial for well-being and maintaining a sense of self.
CONNECTING MINDS AND HEARTS: RECOGNITION, INTEGRATION, AND IMPACT OF LANGUAGE AND DEMENTIA RESEARCH
Over the course of the past years, I presented my research at 21 international conferences, both in Europe and the USA, was invited to several events as a speaker, and most recently in November 2023, I was awarded the science award for the societal relevance of the BiliAD Project. Additionally, I integrate my research into the courses I teach; I was able to do so at Utrecht University in the Netherlands and now, again, at the University of Duisburg-Essen in Germany. This means that the discoveries from my studies become an integral part of what I share with students who show continued interest in the intersection of language and dementia. I feel most humbled in this journey when individuals, after presentations, express that they feel seen and that they can relate my findings to their personal experiences, often reflecting on their relationships with family members or friends dealing with dementia. These moments affirm the practical relevance and impact of this work, and I am immensely grateful for those whose voices allow me to connect with so many more through my research.
INTERNATIONAL INTERSECTIONS IN DEMENTIA RESEARCH
Research is not done in isolation; findings gain meaning within the contexts of their field and related disciplines. That’s why I advocate for interdisciplinary collaboration and community outreach, valuing the community’s contribution, and ensuring transparency in the research process. That’s why Edith and I initiated an international interdisciplinary roundtable, INTERSECTIONS, where scholars and professionals from various fields lead discussions and share implications for research in related disciplines, providing a platform to address questions and concerns and share them with interested participants (researchers, practitioners, care couples,…).
You can join the next roundtable via the following link:
Join us on Zoom: https://uni-due.zoom-x.de/j/68020428282?pwd=Obtrz8FtSKpm823Y8rwbxUZ9atcgK9.1
Passcode: table#13