Evolving Presentation of Self: The Influence of Dementia Communication Challenges on Everyday Interactions

Title of the Paper

Evolving Presentation of Self: The Influence of Dementia Communication Challenges on Everyday Interactions

Paper Information

• Subject Area: Human-Computer Interaction and Elderly Care, particularly focusing on communication challenges in dementia patients and their impact on self-presentation
• Keywords: Dementia, Communication, Self-Presentation, Stigmatization, Technology, Human-Computer Interaction

Research Background and Issues

• Research Question: How do communication challenges associated with dementia affect the self-presentation of dementia patients in daily interactions, and what are the consequences of these changes?
• Identified Issues:
  1. Dementia patients struggle to maintain a "normal" image in daily interactions due to declines in language, memory, and communication abilities.
  2. Existing intervention technologies primarily address barriers to information exchange, with limited focus on the overall self-presentation of dementia patients.
• Research Importance: The self-presentation of dementia patients is significantly affected by communication challenges, impacting their self-esteem and negatively influencing interactions and relationships with others.
• Motivation and Related Work:
  • Previous studies have rarely focused on how dementia patients maintain their normal social image through "performance."
  • Current technologies mainly address specific communication issues (e.g., word retrieval, memory support) without adequately considering how to help dementia patients better present themselves.
  • Goffman's "Dramaturgical Theory of Self-Presentation" provides a framework for understanding how dementia patients perform in social interactions and the stigmatization they face.

Proposed Solution

• Proposed Method: Conduct in-depth interviews with three key stakeholder groups (dementia patients, formal caregivers, and spouses) to explore the impact of communication challenges on self-presentation.
• Innovations:
  1. Utilized visual interview tools (structured cards and prompt cards) to support dementia patients in expressing emotions and experiences.
  2. Applied Goffman's self-presentation theory to analyze the social interactions of dementia patients.
• Implementation Steps:
  1. Select participants, including dementia patients, their spouses, and professional caregivers.
  2. Use semi-structured interviews combined with visual tools to investigate the impact of communication challenges on daily interactions.
  3. Extract thematic data through a three-stage inductive and thematic analysis process.

Research Findings

• Specific Outcomes:
  • Identified four dimensions of the impact of dementia-related communication challenges on self-presentation: ability, politeness, engagement, and sense of reality.
  • Described how these changes lead to low self-esteem, social isolation, and deteriorating relationships.
  • Proposed recommendations for technology design and policy improvements to mitigate these effects.
• Advantages Over Existing Solutions:
  • Explored the specific consequences of communication challenges across multiple dimensions (ability, politeness, engagement, sense of reality), surpassing traditional research that focuses solely on communication barriers.
  • Emphasized the importance of helping dementia patients accept and share their "evolving self-presentation" rather than simply maintaining their past self-image.
• Experimental or Evaluation Results:
  1. In interpersonal interactions, the self-presentation of dementia patients significantly influences how others perceive their abilities, politeness, and level of engagement.
  2. Changes in patients' sense of reality elicited conflicting adaptive attitudes from spouses and caregivers, further exacerbating relationship tensions.
• Limitations and Future Directions:
  1. The study focused on dementia patients with interaction capabilities, excluding late-stage dementia cases, which warrants future research expansion.
  2. Data were primarily collected in the Netherlands, leaving gaps in understanding dementia communication needs across different cultural contexts.
  3. Further exploration is needed on the role of digital technologies and non-verbal communication in alleviating these impacts.

Summary and Recommendations

• Recommendations for the HCI Field:
  1. Prioritize the impact on patients' self-presentation when designing communication intervention technologies, rather than solely emphasizing the efficiency of information exchange.
  2. Encourage acceptance of dementia patients' evolving self-presentation, shifting the focus from "returning to normal" to "adapting to and embracing change."
  3. Develop technologies that facilitate interaction, such as virtual reality devices to help spouses and caregivers better understand the patients' perceived world.
• Policy Recommendations:
  1. Strengthen public education to eliminate the stigmatization of communication challenges faced by dementia patients.
  2. Provide additional support for spouses and formal caregivers to address communication difficulties and protect their rights.

This study provides critical insights into improving the daily interaction experiences of dementia patients while guiding the design of empathetic technologies and the development of inclusive social policies.