Seeking Truth, Comfort, and Connection
Seeking Truth, Comfort, and Connection
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How do couples with dementia desire to manage reality disjunction and how could technology help?
How do couples with dementia desire to manage reality disjunction and how could technology help?
2023-2024
Part of PhD programme at Eindhoven University of Technology
Activities: semi-structured interviews, speculative designs, thematic analysis.
Published at CUI 2024:
Ruitenburg, Y., Lee, M., IJsselsteijn, W., Markopoulos, P. (2024, July). Seeking Truth, Comfort, and Connection: How Conversational User Interfaces can help Couples with Dementia Manage Reality Disjunction. In ACM Conversational User Interfaces 2024 (CUI ’24), July 8–10, 2024, Luxembourg, Luxembourg. ACM, New York, NY, USA, 15 pages. https://doi.org/10.1145/3640794.3665547
Introduction
Introduction
Imagine having a memory, such as the time you went to a famous mountain area in France for your birthday to cycle for a few days. You remember being there with many friends, acquaintances, and your wife. However, your partner recalls it differently. In her memory, you were there with only a few family members, just the wife and children. How do you handle this difference in memory?
This situation is called Reality Disjunction, where two people present conflicting versions of the same event as true. Reality Disjunction frequently occurs in conversations with people with dementia, and the situation I just described is one that came up during one of my interviews.
Dementia can alter a person’s perception of reality. It can cause amnesia, erasing elements of a person’s past reality, and lead to confabulations, where new false or distorted memories fill in those gaps, creating a new sense of reality. Hallucinations and delusions can also cause a person to perceive their current reality differently. Additionally, communication challenges, including difficulties expressing oneself and understanding others, make it hard to convey one’s perception of reality.
Reality Disjunction in dementia can cause couples to doubt each other’s experiences, feel as though they are living in separate realities, and experience frustration as they continually need to reground the conversation.
Existing research has described how people respond to Reality Disjunction with those who have dementia through observational studies. These studies have shown that people will contradict, ignore, distract, empathise, or go along with the reality described by the person with dementia. However, we wanted to understand how people with dementia and their partners desire to manage Reality Disjunction and how conversational technologies could aid them in doing so.
Method
Method
So, we interviewed six couples, where one partner had dementia, about two things. First, we asked them how they wanted to manage Reality Disjunction.
We did this by having them write down their dialogue from a recent experience of Reality Disjunction. Then, we asked them to rewrite the dialogue based on different response strategies to Reality Disjunction and choose their preferred approach.
In the second part, we asked them how technology could help them manage Reality Disjunction. Since no existing technology addresses this issue, we showed them paper scenarios of speculative designs of conversational technologies that aimed to help them manage these situations. These scenarios included seven speculative designs, addressing the five ways of responding, and a phase before and after the Reality Disjunction occurred. The designs ranged from fully autonomous robots to a simple stick, exploring various ways of influencing the conversation. For example, we had a "truth robot" that always knows and corrects everything, a "mute button" that turned the volume of your partner to zero, and a "distraction TV" that displayed cat videos whenever a Reality Disjunction was detected. We asked participants to imagine using these designs and express their likes and dislikes.
Results
Results
After conducting inductive thematic analysis on the results, we found that both people with dementia and their spouses responded differently to Reality Disjunction depending on whether they prioritised truth, comfort, or connection in their interactions.
Truth
Truth
When participants valued truth, they tended to contradict the Reality Disjunction. This was because they wanted to maintain their own version of reality, keep their partner grounded in their reality, or protect themselves or their partner from perceived harm.
Participants strongly disliked the idea of the "truth robot," as they found interruptions and corrections disruptive. Spouse 5 stated, “I would get into a fight with that thing if it says it knows better.” Instead, they preferred a system that allowed them to fact-check their own perception of reality, helping them maintain their sense of sanity. However, participants felt this would only be effective with objective facts, as they did not trust technologies to understand subjective information due to their lack of emotional nuance. As Spouse 1 noted: “Such a neutral BEEP BEEP does not have any feelings […]. So that cannot be the truth because a feeling is also a fact.”
Comfort
Comfort
When comfort was the priority, participants would let go of the Reality Disjunction by ignoring, distracting, or going along with it. They aimed for comfort to minimize distress for their partner, reduce their own effort, or avoid disagreements.
Participants disliked technologies that would halt their conversations, such as the "mute button" or the "distraction TV," as they felt these did not help resolve their discussions. Spouse 2 commented on the distraction TV: “Sometimes I already feel that the contact has become less because of dementia, and that phone or TV does that even more.” Couple 3 agreed: “We would not talk to each other anymore, that would be the end of ehm... Of the relationship.” They did see potential in technologies that could help diffuse conflicts, making discussions “no longer screaming but talking” (Spouse 3) or using timely humor to ease tensions.
Connection
Connection
When participants prioritised connection, they would empathise with their partner’s experience and ask questions to better understand it. They sought connection to enhance communication, foster mutual understanding, and respect each other’s right to their own knowledge and beliefs.
Here, participants believed that technologies aiding in communicating different perceptions of reality could foster better understanding. As participants sometimes found it exhausting or challenging to ask the right questions, conversational user interfaces (CUIs) could assist by prompting further questions to clarify the story. Additionally, text-to-image or text-to-video technologies could help illustrate experiences for each other, fostering more empathy. As Spouse 1 remarked that the memory glasses would help them understand each other: “Because I have seen it now, then you know what it was about.” However, participants worried about losing control over their experiences and feared that their experiences might be inaccurately represented. A participant with dementia emphasized, “I exclusively [talk about my experiences] myself. Only for myself and my interpretation.” Thus, these technologies should not take over storytelling entirely but should allow room for personal input.
Education
Education
Our final finding was that balancing the values of truth, comfort, and connection is challenging. Contradicting a partner might preserve the speaker’s reality but could upset their partner and end the conversation. Letting go might bring comfort but could require abandoning efforts to align realities and rejecting a partner’s attempt to connect. Empathising could strengthen relationships but requires patience, effort, and mutual willingness to acknowledge different realities. Most participants had not previously reflected on how they managed Reality Disjunction; their responses were instinctive rather than goal-oriented. Reflecting on this during the interview led Spouse 2 to a realisation: “Because of this research. What does it even matter that we have different opinions? Is it even necessary? Just let it go, just accept it. And that works quite peacefully.” Thus, a fourth design direction is a conversational technology that simulates Reality Disjunction and helps people evaluate and practice their preferred responses.
Main takeaway
Main takeaway
Through this study, we have shown that couples dealing with dementia approach Reality Disjunction based on whether they seek truth, comfort, or connection during their interactions. We have proposed four directions for exploring how conversational technologies can support them. Including a Conversational User Interfaces as fact-checker, defuser, storyteller, or educator.
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