Communicating dementia across three generations within Chinese families

Abstract

Background: Communication is fundamental for dementia care to address uncertainty and ambiguity. Family members play a constant role in the patients’ life and are their main communicative partners throughout the disease journey. Open and effective communication in the early stage can significantly benefit the patient and family unit in the long run. People with early stage dementia have largely retained the ability to communicate and have the desire to engage in family communication related to their condition. Additionally, demographic changes mean that adult grandchildren are increasingly likely to share caregiving responsibilities and exert influence on the family communication process. Because China features the world’s largest population of patients with dementia, it is also important to explore how the intrinsic Chinese communication culture complicates the communication process. However, how Chinese family members communicate about early stage dementia across three generations is poorly understood.

Objectives: This study adopted an intergenerational lens to examine how Chinese family members communicate about salient dementia-related issues. First, it aimed to understand three family communication processes in the early stage, including the initial decision to seek a dementia diagnosis, post diagnosis disclosure and prognosis communication, and emotional communication. Second, it aimed to understand the communicative role and responsibility of adult grandchildren. Third, it aimed to understand the influence of Chinese communication culture.

Methods: Guided by constructivist grounded theory, three rounds of qualitative interviews were conducted with one member in each of the three generations in the family: adult grandchildren, adult children, people with early stage dementia, and the patients’ spouses. The first-round interview was conducted through convenience sampling to explore the general research idea. Then, the preliminary categories pointed to areas to explore during the second round of data collection, or theoretical sampling. Finally, I gathered third-round data to check and refine the emerging analytic categories until achieving data saturation.

Findings: A final sample of 28 people participated in this study. Research participants were recruited both online and from fieldwork settings. The family communication process was scrutinized by both the message sender and receiver. Problematic communication patterns were theorized as “disconnected communication”, subsumed by four core categories: unseeable, unspeakable, unhearable, and unmovable. In contrast, “connected communication” was seeable, speakable, hearable, and movable, with family members able to empathetically see each other, speak to each other, hear each other, and move each other to proactive action. The specific cultural context (interdependent self, belief in fate and fatalism), social context (medical system and patient autonomy), and historical context (intergenerational value differences) shaped intergenerational family communication in the Chinese context.

Conclusions: With the global paradigm shift in dementia care from the biomedical model to a more integrated person-centered model, it is imperative to involve people with early stage dementia in communication and recognize their self- consciousness. Adult grandchildren have also become more influential in family communication and care provision. Social work practice should promote connected communication among intergenerational family members experiencing early stage dementia to enable early detection, diagnosis, and intervention and encourage open communication about the prognosis and emotional challenges. (499 words)