Evolving Presentation of Self

How do communication challenges impact how people with dementia present themselves in everyday interactions?

Klik hier voor de Nederlandse versie van deze pagina Evoluerende Zelfpresentatie 

Introduction

Dementia is a collection of symptoms that cause cognitive decline beyond what is expected due to normal aging. It can affect all areas of thinking, including a person’s ability to perform tasks, their memory, and their communication. A crucial aspect of communication is the concept of presentation of self. This term, used by Goffman, describes how individuals attempt to control how others perceive them in social interactions. Presentation of self has been used in HCI (Human-Computer Interaction) research to explore how people present themselves on both online and offline platforms. It is also significant for people with dementia, who often work to maintain a socially accepted presentation of self, despite their cognitive challenges. They may mask their symptoms, disclose their diagnosis, or use humour to shape how they are perceived. 


This effort to maintain a socially acceptable self-presentation suggests that dementia is altering their self-presentation, yet how this alteration occurs had not been studied. Our study aimed to explore how dementia affects self-presentation in order to inform future HCI research on communication.

Method

We began by reviewing existing literature and identified fifteen common communication challenges faced by people with dementia. These challenges include difficulties with speaking, such as ‘not being able to find the right words,’ as well as listening challenges, like ‘struggling to follow a conversation.’ Memory issues were also common, such as ‘starting to say something and forgetting what it was about,’ along with contextual problems like ‘using inappropriate language such as curse words or sexual language.’ 

We presented these fifteen communication challenges to sixteen people with dementia, fourteen formal caregivers, and six spouses. The participants with dementia were still living at home and had mild to moderate dementia. Through semi-structured interviews, we asked how they experienced these challenges. To accommodate communication difficulties during the interviews, we provided printed cards listing the communication challenges for better comprehension and recall, as well as emotion prompt cards to help verbalise their feelings. We transcribed the interviews and analysed the data using abductive thematic analysis and open coding.

Results

Our primary finding is that communication challenges caused by dementia do alter how people with dementia present themselves in social interactions. Specifically, these challenges affect how they present their competence, politeness, engagement, and reality. Below, I briefly describe each theme; for a more comprehensive understanding, I recommend reading the full paper.

Altered presentation of competence

The first theme relates to the presentation of competence. When people struggled with speaking, such as being unable to find the right words or using incorrect grammar, it altered how they could display their competence in interactions, differing from the skills they previously attributed to themselves. For many, this was frustrating or distressing, especially for those who had been very social or had careers requiring strong linguistic skills. However, there was an exception in a man named Jerry, a former copywriter who struggled with word-finding. He created new words spontaneously and remarked, "It really becomes your language, your own language. Yes, I enjoy that." Unlike others, Jerry saw his communication challenges as an opportunity for authenticity. 

This leads to our first implication for HCI research: shifting from a focus on maintaining self-presentation to accepting and encouraging the evolving self-presentation of people with dementia. Instead of comparing individuals with dementia to their pre-dementia selves, we should celebrate their current self-expression.

Altered presentation of politeness

The second theme concerns the presentation of politeness. When people spoke excessively, interrupted others, or used inappropriate language, their presentation of politeness deviated from social norms. A formal caregiver named Emma explained the difficulty: "I find it difficult if someone in that moment is no longer susceptible to reason and fires a cursing cannon at you. Do you then walk away?" This misalignment with societal expectations often left others unsure of how to respond. 

Thus, our second implication is the need to train caregivers and spouses to expect the unexpected communication that can arise due to dementia, preventing uncomfortable situations like the one described.

Altered presentation of engagement

The third theme revealed that difficulties in initiating, maintaining, or remembering conversations altered how people with dementia presented their engagement in social interactions, particularly affecting their close relationships. Daisy, a woman with dementia, described how her son would visit and talk about his vacation, but she struggled to follow his stories. She shared, "he said, if I am not focused, he will not put in the effort to continue telling me this." Her inability to focus led her son to stop sharing his experiences, which ultimately disrupted their communication. 

This brings us to the third implication: any assistive technologies designed to support the communication of people with dementia should consider their impact on self-presentation. For instance, if a communicative device helps someone find the right words but causes them to focus on a screen rather than the other person, it might make them appear less engaged. Alternatively, such technologies might make the person seem dependent, potentially reducing their perceived competence.

Altered presentation of reality

The fourth theme addresses the presentation of reality. When people with dementia forgot memories, altered memories, or perceived the world differently, their presentation of reality diverged from that of others. This was poignantly described by Jacky, a woman with dementia, who said, "when my husband comes to pick me up. I cannot say 'Gosh, we had such a fun conversation this morning about this, that and that.'" Her inability to remember events led to a sense of living in separate realities from her husband, resulting in a loss of connection. 

The fourth implication is that HCI needs more interventions to foster mutual understanding of both experiences and intentions, enabling people to discuss their daily activities and remain engaged in their interactions.

Stigmatisation

In extreme cases, people with dementia were described by their close ones using terms like "stupid," "rude," "uninterested," and "insane." This stigmatization led to social exclusion. Therefore, our final implication is the need for initiatives that reduce communication-related stigma around dementia. We must highlight that, despite communication challenges, people with dementia can still be competent, polite, engaged, and share a sense of reality with others.

Main takeaway

The main takeaway of our study is that communication challenges can alter how people with dementia present their competence, politeness, engagement, and reality. These alterations can result in decreased self-esteem, social exclusion, and weakened relationships. We have identified five implications for how these problems can be addressed in HCI research.