Lingyi Shen is an Anthropology student set to graduate in May 2025. Over the past four years, she has worked closely with the CSCC. She served as a student coordinator for the Care and Gender Cluster and the N Aging and Care Initiative, helped organize and lead several CSCC events, and participated in multiple CSCC research/community projects.
Lingyi’s signature work project is an ethnographic study that delves into the lived experiences of older adults in China, specifically those who live with dementia in residential care facilities. The study probes into the subjective experiences of aging and how individuals with dementia strive to maintain their sense of self and identity amidst the cognitive decline. The methodology draws on narratives from institutionalized older adults with dementia, presenting their stories of self-negotiation, belonging, relationships, and their struggles in expressing subjectivity.
Through monologues, conversations, and thematic narratives derived from extensive fieldwork, Lingyi’s research provides a nuanced understanding of dementia beyond the physiological impacts, highlighting the interplay between subjectivity, intersubjectivity, and the physical body. The project aims to reframe the discourse of self in the context of dementia, promoting a perspective that values the embodied experience and diverse forms of expression.
In this conversation, we delve deeper into Lingyi’s timely research, a topic of increasing relevance due to the demographic shifts happening in China and across the globe as populations age.
Hi Lingyi, we are intrigued by your focus on aging and care in the Chinese healthcare setting, using anthropological perspective. Could you share what drives your passion for this topic and what pivotal moments led you to pursue this field of research?
It’s interesting to look back at my four years of undergraduate experience that led me to pursue this field of research. What initially drew me to the topic of aging and care was pretty personal. My grandmother from my dad’s side was diagnosed with moderate to advanced Alzheimer’s disease. I observed how my dad and his brother struggled as primary caregivers, taking care of their mother who were no longer the person they were familiar with, with little social and healthcare support from the community. Thus, while I was exploring for my passion at DKU, I intentionally looked for opportunities that concern aging and care.
Luckily, during my freshman year I was offered a chance to participate in a Summer Research Scholar project supervised by Professor Keping Wu on long-term care and mental health of older adults. This was also the first time that I approached the topic of aging and care through anthropological perspectives and research methods. Later, during my sophomore year, I continued to work with underserved older adults through an intervention project collaborated with Professor Hanzhang Xu on oral health and intergenerational ties in rural areas. All these research experience made me wonder what the care needs of older adults in China are since their voices are often overlooked during the care process. I kept this in mind while volunteering at Charles House Association and Snow Approach Foundation during my exchange program at Duke University. Being a regular volunteer and a photographer allowed me to shadow senior couples dealing with dementia, experiencing with them the ways they navigate their lives among university affiliated hospitals, day care centers, respite care programs, dementia support programs and things beyond dementia. I was amazed at what they had achieved and wonder what the lived experience of their counterparts in China would be like.
All these experiences are essential that helped pave the way for my signature work project on aging and dementia care in China.
Could you explain the procedures in place to safeguard your research participants, since they belong to the potentially vulnerable subject populations?
Of course. This is my first time working with interlocutors who are physically and cognitively impaired, with some of them also being economically disadvantaged. So, I consulted with many professionals during my research preparation phase. I inquired my mentors and professors I worked with who had abundant experience working with older adults and those with cognitive impairments. They recommended me to look into the standardized and validated instrument of MacArthur Competence Assessment Tool – Clinical Research (MacCAT-CR) developed by Appelbaum and Grisso (1995). To make sure the instrument is applicable in the Chinese context, I inquired Dr. Appelbaum himself for the translation and adaptation. I also double-checked my consent process derived from the instrument with the DKU Institutional Review Board Chair to make sure that my participants are protected during the research.
And could you walk us through how you address any potential biases or inaccuracies in the self-reported stories, making sure the stories you’re collecting are as authentic as they can be, especially when they come from people with dementia who might have trouble with their memories?
This is a great question.
I believe, methodologically, potential biases or inaccuracies are inevitable in self-reported data, both in quantitative research (e.g., questionnaire) and qualitative research (e.g., semi-structured interview), among all kinds of participants, the young and the old, the able-bodied individuals and those with impairments. That’s why in social science research method courses, we were taught to use the strategy of triangulation. In social science, triangulation is defined as the mixing of data, methods and theories so that diverse viewpoints or standpoints are included to cast light upon a topic. For example, to verify whether a person did walk her dog regularly as she said in the interview, the researcher would spend time observing the participants daily routine (a different method) and ask the participant’s neighbor whether they saw her walk the dog regularly (different source of data). During my research with older adults with dementia, I also implement the strategy of triangulation, verifying the self-reported stories by observing their behaviors, referring to medical documentations and interviewing their caregivers and family members.
However, for this particular project, my goal is not to distinguish right from wrong and true from false in my interlocutors’ stories. Instead, I want to present their (older adults with dementia) side of story which many of us, the able-bodied individuals, believe is distorted, imagined and schizophrenic because of their illness. For me, the very question on authenticity and accuracy is not valid. What is real and what is authentic are obscure and subjective in a sense that they are social constructs defined by those in power. According to scientific research on psychology, even among healthy young adults without memory issues or amnesia, the memory is a mixture of facts (what actually happened) and imagination (reconstructed or distorted memory). But seldom were there individuals questioning the accuracy and authenticity of healthy young adults’ narratives. So, instead of putting much effort in making sure the stories told by people with dementia are accurate and unbiased, I intend to present the richness and complexity of human behavior. What are the realities of older adults with dementia? How’s that different from ours? How can we understand them in that way?
During your research and volunteering experience, what innovative care strategies have you come across that empower individuals with dementia, enabling them to retain a greater degree of choice and autonomy in their care?
I won’t say it’s necessarily innovative. But to provide a greater degree of choice and autonomy for older adults with dementia, more time and effort should definitely be taken. Here’s a small example. While I was volunteering at the Charles House Association (I always went during the Monday morning reading session), my first task was getting all the participants (around 12 older adults with dementia in my room) their preferred drinks. There are many options for them to choose from, hot drinks (hot tea, hot coffee, hot chocolate) and cold drinks (lemonade, cranberry juice, iced tea). I was like a waitress taking the orders and making sure they got what they wanted. Because they had memory issues and some of them had trouble expressing themselves, every volunteer was trained to ask very simple “yes or no” question and “choosing one from two/three” questions. Instead of asking them “what kind of drink do you want for today”, we would start by asking “Do you want some drinks today?”. Then goes to “Do you prefer hot drinks or cold drinks?” “We have lemonade, cranberry juice, iced tea. Which one do you prefer? lemonade, cranberry juice, or iced tea?” Then end with “Do you want ice in it or not?” It did take much time, but the facility put much emphasis on this small act of autonomy. This is a very small example, but it is an attempt to ensure that individuals with dementia can get some degree of choice when they are gradually losing control of their life.
Lingyi, reflecting on your time as an undergraduate researcher, what skills did you gain that you see as most valuable for your future endeavors?
One of the most valuable skills I gained is building and leveraging a strong support system. For ethnographic research in particular, researchers need to work closely with their interlocutors. Many face physical and emotional challenges during their works aside from academic obstacles. Researchers may encounter ethical dilemma, and death and dying situations, which are hard to overcome on their own. So, the skill to protect oneself, building and leveraging a strong support system that includes families, friends, teachers, and professional helpers such as therapists is essential. It is valuable for your future endeavors no matter whether I continue to do research or go to work.
