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

Communication can become challenging for people with dementia due to language, speech, discourse, and memory impairments. Although recent developments in Human-Computer Interaction have addressed some of these communication challenges, little is known about how they affect the self-presentation of people with dementia in everyday interactions. To understand this connection, we conducted interviews with sixteen people with dementia, six spouses, and fourteen formal caregivers. Our qualitative data revealed that people with dementia’s presentation of competence, politeness, engagement, and reality are altered by communication challenges, which can impact their self-esteem, interactions, and relationships. Our study highlights the need for developing technologies that can enhance mutual understanding and acceptance of people with dementia’s evolving presentation of self. Additionally, policy changes are required to reduce the stigma associated with communication challenges to foster social inclusion.


INTRODUCTION
Dementia is a collection of symptoms that cause cognitive decline beyond normal ageing, impairing memory, thinking, and daily activities [70].As the number of people with dementia grows worldwide with no cure available [70], we need to focus on enhancing people with dementia's ability to live well with an increased quality of life [40].People with dementia can face daily communication challenges due to language and speech impairments [39,42,47,85], including word finding, turn-taking, and comprehension issues [47,76,85].These challenges influence people with dementia's communication, the transmission of verbal and non-verbal messages [62], with their formal (paid) and informal (often family) caregivers, who increasingly assist them with activities of daily living [16].Ineffective communication can hinder caregivers' ability to identify needs [94], trigger problematic behaviour in people with dementia [85], and hinder family members' ability to maintain meaningful relationships [77,85].While research on how people with dementia experience communication challenges is limited [1], understanding their perspective is crucial for developing interventions to enhance their quality of life.
Interventions in Human Computer Interaction (HCI) have successfully been developed to improve communication for people with dementia, addressing word-finding [7,63], topic finding [4,84,95], and memory [13,33,43].However, people with dementia do not focus on just conveying information but also work to maintain their self-presentation and appear 'normal' and acceptable in social interactions [6].This suggests people with dementia feel something in their self-presentation is not 'normal' enough, which these HCI interventions only address indirectly by helping overcome communication hindrances rather than seeing self-presentation as an important, overarching goal.Birt et al. suggest that people with dementia fear being stigmatised in interactions [6], where others will mark them as different from society and devalue them if they do not conform to society [26].This corresponds with Goffman's dramaturgical self-presentation theory, which describes people's attempt to control others' perception of them during face-to-face interactions through 'performances' [25].Self-presentation has been applied within HCI to analyse and design for users' desires to present an ideal self on online platforms (e.g., [34,35,57]), but not in understanding how people with dementia desire to present themselves or are perceived by others in social interactions.Before designing for people with dementia's self-presentation, we must understand how dementia affects their self-presentation in social interactions.
This study addresses the research question: How do communication challenges in dementia impact people with dementia's self-presentation in everyday interactions, and what are the consequences of these changes?We inform future HCI dementia research on how altered self-presentation should be considered in designing communication technologies for people with dementia.The study triangulates three key stakeholders' perspectives: people with dementia, formal caregivers, and spouses, as communication involves multiple parties.We conducted semi-structured one-on-one interviews starting with dementia-related communication challenges to indirectly examine their effects on interactions based on participants' experiences.Our contribution is threefold.1) We describe how communication challenges change people with dementia's self-presentation in everyday interactions and how people with dementia, spouses, and formal caregivers perceive this change.2) We demonstrate how altered self-presentations affect self-esteem, interactions, and relationships.3) We propose technology and policy changes to mitigate these effects.

RELATED WORK 2.1 Communication Challenges in Dementia
People with dementia can face various communication challenges depending on the dementia type and stage and the person's personality and coping methods [28,41,87].Alzheimer's disease, the most prevalent type of dementia, typically causes memory impairment and word-finding problems, making it harder to recall and communicate experiences [3,47,79].Frontotemporal dementia affects the frontal and temporal lobes of the brain with its behavioural variant causing changes in personality, behaviour, and social awareness, hindering understanding of social cues, appropriate communication, and empathy [3,47,79].The primary progressive aphasia variant of frontotemporal dementia primarily impacts language and communication abilities, affecting speech fluency, word retrieval, and comprehension difficulties [92].Vascular dementia, caused by impaired cerebral blood flow, can cause difficulties in structuring thoughts, following communication threads, and verbal fluency due to uneven cognitive deficiency distribution [3].Lastly, Lewy body dementia can impair communication by causing visual hallucinations, attention fluctuations, and discourse organisation issues [3,47].This shows that people with dementia can face diverse challenges affecting communication at all levels.

Consequences of Communication Challenges
The consequences of these communication challenges have been studied through observations and from the perspectives of formal and informal caregivers.The challenges in everyday conversations with people with dementia can result in misunderstandings [11,69], contradictions regarding differing world experiences [38], and families struggling to maintain the quality of their relationships [77,78,85].Formal caregivers report that their caregiving load increases when deteriorating communication ability leads to increased problematic behaviours in people with dementia, including agitation, restlessness, and wandering [85].Formal caregivers may also struggle to adapt to and understand the underlying meaning of people with dementia's communication, resulting in missed opportunities to comprehend their needs, emotional states, and inner worlds [94].Although this research highlights the importance of addressing communication challenges, it often misses the perspective of people with dementia [2], only discussing one perspective from the two-sided conversations [94], and rarely acknowledges informal caregivers' interaction needs beyond facilitating the person with dementia's communication [45].Thus, research is needed to investigate the needs concerning communication challenges in dementia from the perspectives of people with dementia and their formal and informal caregivers.

People with Dementia's Presentation of Self
According to Goffman [25], people attempt to control others' perceptions of them during social interactions.Using a dramaturgical approach, Goffman illustrates how people engage in front-stage activities in social interactions to match expectations of 'normal' behaviour and appearance.In contrast, people engage in back-stage activities in private spaces where they can relax and drop their front.
Self-presentation has been studied within HCI in the context of social media [34,35,57], online games [53], medical devices [67], and the internet before social media [59].These studies highlight how users' desired self-presentation evolves as they mature and grow their social networks and how users continuously curate their past content to align with current self-presentation goals [35].Moreover, shorter posting timelines on online platforms like Snapchat enable self-presentation experimentation without needing consistency [57].However, these studies may not be representative of the dementia context as they involve asynchronous communication [29] and a participant group of young adults [34,35,53,57].Birt et al. [6] illustrate how people with dementia also perform Goffman's front-stage performance in social encounters to present an acceptable and 'normal' self to their audience.They suggest that people with dementia worry that if their front-stage were flawed, others would notice and discredit them.People with dementia thus masked their symptoms, using comedy or explaining the diagnosis.This is linked to Goffman's definition of stigma [26]: an attribute, behaviour, or condition that marks an individual as different from others in society and, as a result, leads to a devaluation of the individual.People with disabilities who perceive stigma tend to have a more negative self-image [73], which in turn may negatively impact people with dementia's quality and satisfaction of life and well-being and increase risks for depression [81].Lazar et al. show that some people with dementia attempt to combat dementia stigma by sharing their experiences of living well with dementia online [49].However, they also face challenges in balancing presenting their stories as "real and raw" or polished without signs of dementia.While the research above indicates that self-presentation is essential to people with dementia in their social interactions, it is unclear how dementia impacts their self-presentation and what happens if they do not present a 'normal' or acceptable self.

Technology and Dementia
Recent HCI dementia research shows a shifting focus from filling the gap left by impairment [50] to enhancing the quality of life, enabling people with dementia to stay connected to the world and others [40].Some assistive technologies increase the agency of people with dementia by assisting them to perform everyday tasks and activities independently.For instance, a GPS compass that always points towards home helps people with dementia navigate their way home during walks [8], conversational agents help with medication reminders, appointments, and daily activities [54,102], and Augmented Reality helps in planning tasks such as cooking and washing hands [58,68,97].Technologies have also increased social connectedness for people with dementia through enabling shared activities of personalised sounds [30], recipes for collaborative cooking [80], printing media devices increasing social contribution [22], and online platforms to share artworks or voice recordings to connect and beat stigma [49,51].
Research has also emphasised the need to make current technologies more accessible to vulnerable populations [32], recommending conversational agents to adjust to the auditory and speech needs of people with dementia [20] and to use errorless learning instead of a trial and error approach to cater to memory deficits [101,102].These works demonstrate the increasing focus of technology targeting people with dementia and their loved ones' social, emotional, and relational experiences in everyday life.

Dementia Communication Technologies
Within HCI, there has also been a focus on improving communication experiences with people with dementia.Paper visuals have helped people with dementia with word-finding problems, enabling easier communication, better memory retention, and increased engagement during communication [7,63].Digital interfaces initiated new conversation topics, repositioning people with dementia as storytellers and advice givers and strengthening connectedness between family members [4,84,95].Game apps were introduced to enhance engaging interactions between people with dementia, visitors, and formal caregivers and enrich visiting experiences [64].Taking and sharing photos of people with dementia's past activities enhanced their memory and social interactions, helped them maintain dignity, and provided the family with insights into the person with dementia's daily life [13,33,43].Asynchronous communication devices were introduced to help people with dementia maintain contact with family members, reducing communication barriers and enabling the agency of people with dementia [19,88].
These technologies help improve the communicative experiences of people with dementia and formal and informal caregivers.Still, there is limited HCI research that includes how people with dementia present themselves and are perceived by others in social interactions, despite its importance to people with dementia's experience.Zhou et al. did find that an assistant robot for word-finding and memory enhances the perceived communication skills of people with dementia and increases other people's likelihood to interact with them [100].However, research on how assistive technologies impact the self-presentation of people with dementia is scarce.Understanding how dementia affects a person's self-presentation in everyday interactions is the first step toward incorporating selfpresentation needs in communication interventions.

METHOD
Our goal was to understand how dementia impacts people with dementia's presentation of self in everyday interactions, how these changes are perceived by people with dementia, formal caregivers, and spouses, and how this impacts their experiences.We conducted semi-structured interviews with visual prompts to uncover the perspectives of the three stakeholder groups through abductive inquiry [89].We chose interviews because the focus was on participants' personal perception of their communication experiences.

Study Design
While interviewing people with dementia can pose challenges due to memory, communication, and abstraction difficulties, interviews have successfully been part of dementia research involving the exploration of participants' perspectives [10].To overcome these interview challenges, we opted for a more visual, collage-making approach as this has successfully been used before with people with dementia [10] and can help participants express underlying feelings and emotional states [82].Visual data can be helpful in eliciting participants' perspectives, especially regarding emotional experiences that can be difficult to capture with words alone [24,24,71].
We developed two sets of visual cards: structure cards for outlining the exercises and prompt cards for helping participants visually convey their experiences and views (see Figure 1).Structure cards with written descriptions and illustrations of the interview topics were presented on the table (see Figure 2) during the interview to help participants understand and remember the questions and structure their answers [27].Participants could respond to the questions verbally or use photo or illustration prompt cards, which offered a diverse visual vocabulary related to communication, emotions and relationships.Several prompt cards were designed to provide 'easy' starting points for expressing views [83], featuring emotional states from Cordaro et al. [12], Plutchik and Kellerman [75], and moods of McNair et al. [56].These included illustrations of facial expressions as they are more understandable than words describing emotions [21].Additionally, more abstract cards representing the personality traits of Mccrae and Costa [55] and the fundamental needs of Desmet and Fokkinga [17] were included.These abstract cards were chosen for their potential to evoke varied interpretations by giving participants the freedom to express their perspectives and experiences [83].The photographs on these cards, selected from unsplash.com[90], aimed to offer a wide variation of interpretations [83] and stimulate the communication abilities of people with dementia [43].The materials were iterated upon in three pilot rounds to ensure they were understandable and served their intended purpose.

Participants
The recruitment was done through personal contacts and snowball sampling, an effective strategy for including people from hard-toreach populations who may be hesitant due to stigma, vulnerability, and need for trust [72].The first author collaborated with dementia Three dementia meeting centres (day centres for people with dementia), two care facilities (permanent stay of people with dementia), and five participants' homes were visited.At these locations, participants were encouraged to suggest others interested in participating.This recruiting approach continued until data saturation was reached.
The study included 36 participants, including 16 people with dementia (P#), 14 formal caregivers (C#), and 6 spouses (S#) (refer to Table 2).We recruited people with dementia who could communicate verbally and were willing to participate in an interview.We did not seek an official diagnosis of dementia type or stage due to the sensitivity of sharing personal health data [52] and because of our focus on the lived experience of specific dementia impairments [36].Instead, we relied on caregivers' and spouses' confirmation of dementia.We asked participants to self-report which common   [47,76,85] Participants themselves brought up the final two communication challenges (16 and 17) dementia communication challenges (see Table 1) they (or their spouse or clients) experienced.
Fourteen people with dementia lived at home (4 alone, 10 with spouses) and two in care facilities.Although not formally collected, individuals disclosed a range of dementia diagnoses during the interviews, including mild cognitive impairment, stroke-related dementia, aphasia, Alzheimer's disease, Vascular dementia, and Lewy Body dementia.All people with dementia were 50 to 99 years old,  Table 2: Participants of our study and their self-reported experienced communication challenges.The list of communication challenges is presented in Table 1.Fifteen challenges were pre-defined and shown to all participants.Participants themselves brought up the final two communication challenges (16 and 17).
could physically interact with study materials, and communicate verbally during the interviews.All formal caregivers provided professional care or activities to people with dementia.They were 19 to 79 years old, with 13 women and one man, working at meeting centres (5), care facilities (7), home visits (1), and a geriatric office (1).Four female and two male spouses were or had been romantic partners of a person with dementia.These spouses were aged 70 to 89 and lived with their partner with dementia at home (5) or alone as their partner had recently passed away (1).All participants spoke Dutch and resided in the Netherlands.Most participants were white (33) and born and raised in the Netherlands (32).

Ethics
The study was approved by the Ethical Review Board of the Eindhoven University of Technology.Participants were introduced to the study's objectives and methodology in layperson's terms.Informed consent was obtained from participants, both orally and in writing, to ensure they willingly participated [5,18].We also acquired proxy consent for people with dementia from spouses in the home setting and head formal caregivers at meeting centres and care facilities.Participants were told that they could withdraw their consent at any time.
Care was taken to ensure the comfort of the participants.For instance, interviews took place at homes (8), meeting centres (19), and care facilities (9) of participants to ensure their familiarity and ease of transport.Moreover, thirteen participants had met the first author during previous research, enhancing their comfort and the first author's ability to adapt the interviews to their specific needs [36].Three people with dementia preferred paired interviews with their partner or caregiver present.All other interviews were conducted one-on-one (see Figure 3) to ensure privacy, fewer distractions, clearer recordings, and limited interference from other stakeholders [14,93].The first author also observed participants' verbal and non-verbal stress cues [5,14] and offered to continue, pause, or end the interview when encountering signs of distress.Four participants showed signs of distress during the interview, with one opting to end the interview early.With prior experience interviewing people with dementia, the first author adjusted her communication and questions accordingly to each participant.For instance, participants who struggled with word-finding were encouraged to express themselves through the visual paper prompt cards, and those with short-term memory deficits were reminded of the questions more often.

Interview Procedure
Four exercises were designed to explore communication challenges, communication quality, misunderstandings, and communication changes.While the first exercise was done with all participants, the other three were introduced depending on each interviewee (e.g., their energy).The first exercise on communication challenges utilised fifteen paper cards depicting dementia-related communication challenges based on Powell et al., Klimova et al., and Savundranayagam et al. [47,76,85] (see Table 1 and Figure 1, left).Participants selected the challenges they recognised in their own communication (for people with dementia) or in communication involving a person with dementia (for spouses and caregivers) and discussed their experiences concerning these challenges.In the second exercise, participants explored communication quality and what they felt constitutes good or bad communication.In the third exercise, they reflected on misunderstandings and how they experienced being misunderstood, misunderstanding others, and perfect understanding.For the last exercise on communication changes, participants picked a person with dementia (for spouses and caregivers) or someone they were close to (for people with dementia).They reflected on how their communication has changed between the past and the present and how they desired it to be in the future, as this helps with understanding their underlying needs, values, and aspirations [83].
Interviews were video-recorded to capture verbal and non-verbal cues of participants who struggled with verbal expression [14,37,96].Handwritten notes were taken during one interview since the participant preferred not to be recorded.Photographs of the paper collages and handwritten notes on participants' backgrounds were collected for all interviews.The interviews were conducted in Dutch and translated into English to report the findings.

Analysis
The first author recruited, interviewed, and handled the transcription process of all participants, resulting in a deep immersion of the data and fostering a profound understanding of the research context through participants' perspectives.Following the abductive qualitative research approach, the research team served as a "community of inquiry" [89].Here, we developed codes and themes over two months through a series of discussions over the data.We coupled abduction with thematic analysis as it flexibly aligns with many "schools" of qualitative research [9].
We describe our positionality as it may affect our data analysis.The first author is a white young female working in the Western European context.She grew up in the same country and has the same native language as most participants.Because she is slightly hearing impaired, she frequently experiences miscommunication in her own daily life.She is bilingual and is comfortable communicating in both languages.While she does not have any experience with dementia in her personal life, she has frequently worked with people with dementia in research.
Three abductive open group sessions with researchers familiar with dementia research helped us generate initial codes and discover relevant theories through a collaborative review of ten interview transcripts.Our initial open codes included codes such as "performance-driven communication, " "more unique language, " and "lack of common ground", which resulted in a codebook organising the consequences of each communication challenge, focusing on the impact on self-esteem, interactions, and relationships.The first author then compared these initial codes across all transcripts and classified the data using this codebook, adding new codes as needed.Codes related to self-esteem included, for example, "insecurity through misunderstanding" and "frustrating when communication abilities mismatch prior identity".The three stakeholder viewpoints were used to triangulate these codes [46].Next, four iterative theme rounds followed, with input from the research team in between.The first phase provided 24 sub-themes describing the experience of communication problems, such as "change in communicated identity" and "different truths".In the second iteration, seven narrative themes were developed to explain the causes and effects of communication problems, e.g."people with dementia's perceived identity is changing while everyone is still holding on to their old identity."Next, we identified our observations were a descriptive case of Goffman's theory of self-presentation [25].Four themes indicating the impact of the dementia-related communication challenges on changes in self-presentation were defined.Lastly, sub-themes within the four altered presentations of self were formed to highlight their effect on self-esteem, interactions, and relationships.

RESULTS
The experiences of people with dementia, their spouses, and caregivers revealed significant changes in the presentation of people with dementia's competence, politeness, engagement, and reality due to dementia-related communication challenges.Figure 4 presents the themes and sub-themes of the findings.In line with Goffman's dramaturgical theory [25], we found that people with dementia's altered performance in face-to-face interactions shape how they are perceived, impacting their self-perception, interactions, and relationships.

Altered presentation of competence
A person with dementia's presented competence can deviate from their previous capabilities as they forget a subject mid-sentence (Communication Challenge 1) or struggle with word retrieval (CC7), pronunciation (CC12), constructing grammatically correct sentences (CC15), understanding words (CC9), or following discussions (CC14).This altered presented competence can cause 1) departure from previous capabilities and 2) social caution.
4.1.1Departure from previous capabilities.Communication challenges caused P7, P12, and P14 to compare their current competencies to their past ones, raising concerns when they couldn't meet their high social and language competence expectations.P7 disliked his slow communication speed, which led to silence or "failed" jokes, hindering his ability to convey humour and "elegance." P14 found it "difficult" to lose track of her speech as she had "always had a very easy chat." P12 now faces "annoyance" when making grammatical errors because he cannot maintain his linguistic fluency from his prior job as a language teacher.P5, P9, and P14 were less affected by their declining communication skills because they had lower expectations.For instance, P9 stated that she might not catch grammatical errors unless "someone just corrected you." Interestingly, P7, a former copywriter, felt his competence was raised by dementia as he discovered that communication challenges increased his creativity.He enjoyed "using the wrong word" and "deviating from the normal path", adding a "a sort of richness" to his speech.He enjoyed the authenticity dementia adds to his language use "that keeps getting more fun actually, life in a person with dementia.[. . .] It really becomes your language, your own language.Yes, I enjoy that." Spouses and people with dementia also frequently compared their communication skills to others.P2, P3, P7, and P9 negatively compared their communication skills to those without dementia and felt less advantaged verbally and socially.P3 used to brag about "speaking with better grammar than the average Dutch person" despite her immigration background but now found it "very annoying, dammit [hits her hand on the table]" when her grammatical errors reduced her linguistic advantage.Similarly, P9, born in the Netherlands, "minds it a lot" when her Polish daughter-in-law "who does not even know proper Dutch, but then wants to correct me."Alternatively, five people with dementia (P7, P8, P9, P12, P15) and two spouses (S3, S5) positively compared their remaining communication skills against others with dementia to demonstrate their value.P7 described himself as "not really pathetic yet [laughs]" because he was "still reasonably above the crowd" and did not forget what he was saying.P12 prided himself on being "the most highly educated person" in his meeting group with people with dementia, and P15 felt "lucky" for "still having my head with me" when seeing people with dementia interrupting others.
Thus, people with dementia may become disappointed when their conversational skills no longer match their prior ones and will positively or negatively compare themselves to others.
4.1.2Social caution.People with dementia's social behaviour can depend on how they perceive their communicative competence.P1 and P2 now felt too slow to follow discussions, "before you know it, they are three steps ahead, but then I am still at step one" (P2) and P4, P10, and P11 felt they needed more knowledge to follow discussions "if it concerns a topic that goes over my head" (P4).This perceived reduced competence also influenced how they behaved in social interactions, as P2, P8, and P10 became more insecure and would give disclaimers when speaking "It is definitely not the whole story" (P2) or not get "involved" in difficult discussions and stay "completely aloof" (P10).Moreover, P1, P12, and P13 now felt more "dependent on others" (P1) in social interactions as, for instance, P12 felt he needed his wife to "get the room going".Even so, P2, P9, and P10 said that their reduced perceived competence did not distress or prevent them from participating in discussions as P9, despite grammar and word choice issues, would "keep getting involved in everything, as my husband usually says." P2, C7, C8, and C11 also approached interactions more cautiously with people whom they perceived as less competent.For instance, P2 was cautious and provided comfort to "slower" people with dementia whom she perceived as "shy", "cautious, "afraid", and "who seems, I will say it between brackets, I would never say it, is stupid.While he is not."Similarly, C11 always used gestures with some people with dementia as she felt they would not "understand you" or "cannot start a conversation."And S6 described how her family would not initiate any interaction with her husband at all because they felt it would not be understood.Instead "they would talk to me, and that is not supposed to happen of course, because he is sitting with us too." To conclude, people with dementia can become socially hesitant or avoidant when they feel less competent, and at the same time, others may treat them cautiously when perceiving less competence.

Presentation of politeness
People with dementia's presentation of politeness may deviate from societal norms.We found that the presentation of politeness is altered when people with dementia talk too much at inappropriate times (CC3), unexpectedly change or interrupt discussions (CC5), or use inappropriate language for the context or person they are talking to (CC4).We saw that formal caregivers and other people with dementia considered behaviour that did not fit social norms to be more problematic than spouses did.This discrepancy is consistent with Goffman's theory of front-stage and back-stage conduct [25].In front-stage conduct, such as group conversations and formal caregivers' workplaces, people with dementia have an audience.They are expected to adhere to norms concerning the setting and their role and appearance as speakers.However, during back-stage conduct, such as in conversations with spouses, people with dementia were less expected to adhere to social norms.They can relax and drop their role performance here, as personal relationships supersede societal norms.Participants showed that the

Altered presentation of politeness
Figure 4: Themes and sub-themes of the qualitative analysis.The self-presentation of people with dementia in face-to-face interactions shows an altered presentation of competence, politeness, engagement, and reality, which deviate from the person with dementia's prior skills, social norms, behaviour in personal relationships, and other people's world views.These alterations have several consequences, which are the sub-themes of the findings.
change in presentation of politeness can lead to 1) social exclusion, 2) demonstrating disrespect, and 3) unexpected situations.

Social exclusion.
Changed politeness may misrepresent the person with dementia's family, upbringing, or job.P5, P15, C11, and C13 blamed inappropriate social behaviour on a lack of decency or poor upbringing.P15 thought "You are just like someone from the slum" as another resident cursed while she "was not raised" to interrupt others.Moreover, P3, P5, P7, P10, and P16 reported they "purposefully do not" use curse words (P10) as they found it "so simple" (P7) and stated "yikes, yikes, what am I supposed to do with that [cursing]?"(P5).P9 was an exception; she spoke less polished Dutch than the rest of the participants and cursed, "Sometimes I can say *** [laughs]." C5 and C7 found it challenging for people with dementia and their families when their inappropriate language contradicted their former politeness.C5 described, "if you know that someone used to be a pastor and then suddenly curses a lot.Then you know that does not fit a pastor."However, C8 said when she once found out a person with dementia who always used inappropriate language "did that professionally too, in the prostitution.But that did not make it easier for me to know how to handle that." Misrepresenting a person with dementia's politeness can lead to societal judgements and social exclusion.P2, P5, P10, and P15 said they distance themselves from people who use inappropriate language.P5 claimed her social group does not use profanity, "These are all proper people here, right?[laughs uncomfortably]" and P2 described inappropriate language as "then I think you see this person for the first time and also for the last time." So, different social groups have different communication norms, and people with dementia who deviate from them may be socially excluded.
4.2.2Demonstrating disrespect.P3, P9, P10, and P15 all described how interrupting someone, which deviates from social norms, showed disrespect to that person as "I think they are not listening to me" (P10).P1, P3, P9, and P12 also felt bad when interrupting others or changing the topic.P9 aimed to "unlearn" interrupting others in group discussions as "I should give others a chance [to talk] too" and P3 explained, "yes, that obnoxiousness [interrupting others] I have too sometimes.[...]You are speaking [...] about a topic.Then I understand that, and without me knowing it, I swing onto another subject."C7 and C13 illustrated how these unintentional interruptions can affect someone's social standing because "that also does something with that person's position within that group.I think that gives an effect you actually do not want" (C7).
Therefore, a person with dementia who accidentally disrupts a conversation may be perceived as lacking care or respect for their conversation partner.

Causing unexpected situations.
Altered politeness can cause unexpected situations because the interaction no longer follows typical conventions.C1 and C7 showed people with dementia are sometimes breaking social norms because "they then no longer realise that you are not supposed to do that.The ways we find normal are no longer normal" (C7).C1, C6, C7, C8, and C14 stated that they are surprised and unsure how to respond, de-escalate, or control the situation when the interaction deviates from the norm.S4 added that addressing the behaviour is pointless."You cannot change that, right?I could say, 'do not do that.Do not be so unkind.'No, that is so spontaneous.She does not know she is doing it.If you say it to her [...] she will deny it." C8 also discussed her difficulties de-escalating someone "who can completely explode all at once.I find it difficult if someone at that moment is no longer susceptible to reason and fires a cursing cannon at you.Do you then walk away?That is also difficult because she thinks something about that at that moment, and you have to listen to her.So you do not do that.But, calming her down is also really difficult, so you are looking for a way at that moment, like, how can I distract her?"Moreover, C12 and C14 were unsure how to respond to inappropriate sexual comments.According to C14, a resident requested a young nurse "to take care of him, especially downstairs", which made the nurse "feel a little bit cornered, they want to help him and he is using this act." We cannot know whether the statement itself results from dementia or is something that characterised this person's behaviour before dementia.In both cases, it is a behaviour contrasting social norms that puts the caregiver in a difficult position as their role constrains their possible reactions to prevent this behaviour.
Unexpected language also disrupts group dynamics, according to C5, C7, C8, C9, and C11.C8 said, "especially if other residents are around me, who get visibly upset from that too.That is difficult because that also means you will get a situation.Everyone will get restless and have an opinion." C5, C7, C9, and C11 then felt responsible for mediating the situation to prevent escalation by "explaining it is not happening on purpose" (C5), "steering" the situations (C7, C9), or "saying the same thing with a milder description" (C9).In contrast, C1, C4, and C7 actually found unconventional communication amusing.C7 stated "I always enjoy this one the most [using inappropriate language].The crazier people are, the more I like them, the sooner I would approach them." So, most caregivers and spouses struggle to address inappropriate or aggressive communication since it is unexpected.

Altered presentation of engagement
People with dementia's portrayal of engagement towards close relationships can change due to communication challenges.Troubles starting or maintaining discussions (CC6), hearing (CC13) or following (CC14) discussions, maintaining topics (CC5), finding appropriate moments to talk (CC3), and repeated questions or stories (CC1) can make people with dementia appear apathetic towards the communication, needs, and feelings of other individuals.We found that spouses were more affected by the altered presentation of engagement than formal caregivers.This difference is consistent with Goffman's theory of acquaintance [25], where acquainted people will base expectations on past interactions to predict behaviour in the present and the future.In contrast, those without acquaintance will base expectations on their past experiences with reasonably similar people.So, spouses who have a close personal relationship with the person with dementia have more expectations for a person with dementia's presentation of engagement than caregivers and may thus feel more hurt when their expectations are not met.The consequences of an altered presentation of engagement include 1) downward spiralling interest and 2) a lack of mutual care.

4.
3.1 Downward spiralling interest.P1, P3, P4, P5, P9, and P13 all stated that their struggles to follow discussions stem from cognitive challenges rather than a lack of interest.Although P3 finds a discussion "interesting", she "cannot follow a conversation easily because my thoughts wander off" which she finds "annoying" and minds "terribly." Only P5 admitted she would sometimes not attempt to follow a discussion when "it does not interest me, bye [waves both hands]." P8 and P12 both mentioned requiring help starting or maintaining discussions.P12 "does not mind" silences, but "the other person minds it more I think [...] they still expect something and think 'yes, come on, tell', but I cannot continue [laughs]."S1, S4, C3, C4, C11, and C13 confirmed that communication with people with dementia felt "fairly one-sided" (S4) and frequently "they cannot start a conversation" (C11).
However, while this lack of engagement is often unintentional, S1, S3, S6, and P10 interpreted challenges with understanding or repeated questions as disinterest rather than cognitive decline.S1 said, "I just get pissed off [when he cannot hear].I get the idea that he is not listening" and S1, S2, and P3 even wondered if their partner with dementia's lack of comprehension was intentional."Sometimes I think he does it on purpose [leans laughing and ashamed across the table].That is, of course, completely not true" (S1).As a result of the perceived disinterest, S1, S2, and S3 started to feel their words were meaningless.S3 said if her husband was not "focused" enough when asking repeated questions, she feels he is "not even listening" and she "will not answer anymore [...] I have to protect myself." S1 similarly felt "sometimes I believe me talking is pointless [...] I can better shut my mouth.[...] That is pretty sad." However, she did continue to talk as "it is a habit [...] Also, if I do not say anything, it would not be great to sit here with the two of us doing nothing, talking about nothing." P9 also noticed a similar effect on her son and got annoyed when he stopped talking to her. "My son is telling a vacation story, and I think it is fun.Five minutes later, [...] he starts another story.He is not trying to finish the story because he notices I am not focused.He says if I am not focused, he will not put in the effort to continue telling me this." Likewise, P8 and P10 desired more attention with P8 "liking" the interview since "you get all kinds of questions and answers while I usually just sit alone." Therefore, a person with dementia's altered presentation of engagement may be viewed as intentional, causing their conversation partner to stop speaking, leaving both parties annoyed or lonely.

Lack of mutual care.
Dementia caused an unexpected shift in the relationships of all spouses.S1, S3, and S5 never intended to become caregivers, with S12 after a "lifetime of hard work, " asking why she "deserves" this new responsibility.S1, S2, S4, and S6 described their current and future care obligations as never-ending and all-consuming, as S4 said his partner constantly seeks his help."She always asks for assistance.As soon as I have closed the front door, she asks, 'gosh, come looking at the front door.'" While the care obligations for the spouses have increased, S1, S2, S4, and S6 said they can no longer rely on their partner with dementia for support.S3 missed the "equality in their relationship" when they could "discuss things together.That stops if you keep asking the same question.You cannot discuss buying a house, what to do, or where to live.[...] It is one question, one answer." S1 also mentioned she can't approach her husband for support."I say 'please get that from the garage' and then he does not know that.[...] I cannot count on him that he will do certain things that is completely gone.I feel angry and wonder why I am still here.What am I actually still doing here?" The lack of empathy and appreciation through their partners' communication made S1, S2, S4, and S5 feel undervalued for their caregiving.S4 described his wife getting angry when she was not helped quickly enough with getting dressed."'Such awful buttons, there are so many of them.Can you help me?Help me, goddammit; otherwise, I cannot do it!Otherwise, I have to wait here for it.'Well, then, she has been at it for just a minute.Impatient." S1 also described her husband's "forceful" requests contradicted her wishes.When "he goes to bed, [...] I say, 'well, just wait a minute, right?' [...] But he stands up anyway, and then I should get up, right?I do not always feel like that.[...] If I say, 'you just have to wait a bit', he cannot do that.He has to do it now.I would like that too, that everything happens like I want it, but that never happens [laughs]." So, these spouses who take on so many caring responsibilities feel a lack of mutual care.They cannot ask their partner for help, and their partner may not show empathy or appreciation in their communication.

Altered presentation of reality
Lastly, a person with dementia's presented reality can deviate from their prior worldview and that of others.Difficulties in recollecting past events (CC10) and failure to recognise people (CC16) can hinder communicating prior experiences or lead to the perception that events and people are gradually being erased from their memory.
Challenges in tracking discussions (CC14) and misremembering events (CC17) contribute to different interpretations of past events.Engagement in discussions with hallucinations (CC11) can result in confabulations of entirely new events.The altered presentation of reality can result in 1) a search for the 'true' reality, 2) living in separate realities, and 3) never-ending grounding.
4.4.1 Search for the 'true' reality.S4 and S5 said their partners' memories were fabricated as S4's partner tells "very elaborate stories that are based on earlier events, but she makes up a lot around it.[...] Those are incorrect, have never happened, and come from somewhere else.[...] That is very curious, that is insane."S5 similarly said his partner "has a different experience that plays in her head, which is inconsistent with reality like we others experience." C1, C6, C12, C13, and C14 often went along with people with dementia's subjective realities to avoid distressing them.C4 emphasised "it is not the goal to be right, but the goal is to have contact" and C6 suggested that saying "'gosh, your husband has been dead for twenty years" only makes a person with dementia "upset" and "rebellious." Instead, C5 would "initially go along with" the person with dementia and then attempt to "get them back to the present."Only when a person with dementia's subjective reality causes distress do C1, C6, C13, and C14 interfere.C14 said "We let her chat to the mirror; as long as she is not scared, not stressed, she is calm, we let her.We let her because it gives her comfort.She talks with someone, even if she does not talk back." P3, P5, P9, and P15 have accepted that their realities, including hallucinations, may deviate from the norm.P9 said, "It may be really strange to you, but I am in touch with my [deceased] father." She felt it was reassuring as "at that moment I feel I am sitting there with him, that I am sitting on his lap, that I am his little girl from the past." P3, P8, and P11 recognised and accepted that their views may differ.When P8's wife told him "'that is completely untrue[...].' It appears that I have experienced things differently than she has experienced them." P3 added that "thinking differently" is fine, but "disrespect" is not.
However, S4 and S5 believed there was only one 'true' reality and sought the 'truth'.S4 remarked, "It is curious how she can tell complete stories of which the core is true, but you do not exactly know HOW true it is." S5 expressed experiencing self-doubt."Occasionally you question yourself: Am I? Is it me?How is that possible?"and a lack of trust in his partner because when his partner looked for the frozen chicken, he went "through the trash to see if she did not throw it away anyway."C1, C13, and C14 similarly sought to separate fact from fiction to identify 'real' issues and provide care.C13 said "We know people are struggling [...].But yeah, we can never solve the problem if the problem is not real."However, P9 and P16 disliked others' distrust towards their experiences.P16 recalled how it frustrated her when her husband did not believe her, "I think it is crazy to wear that hearing aid while that actually is not necessary." Hence, while people with dementia may have accepted that their perception of reality has changed, their spouses struggle to accept 'false' experiences and, like some caregivers, strive to find the 'true' experiences instead.

4.4.2
Living in separate realities.Due to a lack of communication about experiences, people with dementia and their spouses and caregivers felt they lived in separate realities.P9, S1, and C12 said short-term memory loss prevented them from sharing experiences.After having a great day, P9 finds it "a shame" "when my husband comes to pick me up [...] I cannot say, 'gosh, we had such a fun conversation this morning about this and that and that.'" Similarly, S1 expressed "annoyance" when it was unclear what her husband did that day."'What have you done today at daycare?' 'Yes, the same thing, ' he responded.Sometimes, I know he arranged flowers when he brings flowers back [...] but otherwise, I do not know." Word-finding (P1, P3, P7, P12), grammar (P12), stuttering (P12), and forgetting what one was talking about (P3, P12) further inhibited people with dementia from sharing their experiences.P3 considered it "horrible" when "you want to convey something so badly.And you cannot.[...] because you cannot find the right words." Likewise, P7 realises others sometimes do not understand him due to word-finding problems.He used walking as a metaphor for talking when he was asked how he felt when searching for the right word."So I come walking in, and then it is walking, walking, walking, walking [talking].Then the accident happens [he cannot find the right word].I will go around it and then another one.And then I will be three words further along, feeling happy about having succeeded.But the person who receives the word is sometimes like [pulls a confused face], 'what is he saying?'"S1 and S6's confusion about their partners' communication reflected this.S6 said "he would say 'yes, this or that.'And then I said: 'I completely do not understand you.I do not know what you mean.'That is very annoying because he wants something, and you do not know what." These barriers to communicating experiences broke down mutual understanding and emphasised the growing gap between the lived realities of people with dementia and their spouses and caregivers.S3, S4, S5, and C11 believed the person with dementia was "making up his own world" (S3) and "sometimes you cannot get her out of her world" (C11).However, C1, C11, and C12 stressed the need to know the realities and experiences of people with dementia.To alleviate distressing hallucinations, C1 needs to know "what exactly that person is talking about and what exactly that person is hearing or thinking".C1, C2, C6, C28, and C12 recommend focusing on underlying emotions when communication becomes challenging.C1 suggested "that you go along in that emotion and do confirm someone in that emotion without you actually understanding what that person is talking about." C9 similarly stressed the importance of "constantly providing safety and connection [...] through body, touch." Thus, a lack of successful experience sharing might lead to a feeling of living in separate realities.4.4.3Never-ending grounding.Caregivers and spouses repeatedly reground communication with people with dementia, feeling they have communicated information with them, but the message was not received.S5, S6, C5, and C8 were frustrated when the person with dementia apparently did not understand them.S6 said "He would say, 'you are in the kitchen, and I hear nothing.'I found that annoying.'yes, but I have said that, right?'But he just had not heard it." S4, S5, C3, C5, C8, C11, and C12 felt frustrated and hopeless because they knew these grounding attempts were not a one-time effort but a relentless loop of continuous reaffirmation of facts that would quickly be forgotten.S4 described endless arguments with his partner over simple tasks like closing the windows."I have closed the windows in the evening.'Yes, I have closed the windows.' 'Yes, but you have opened them this morning.''Well, no, I have not opened them this morning.' 'No, but I have opened them.' Then I have to say that she has not opened them.I say, 'yeees, but I have closed them, that I have not opened or closed them.'And then, five minutes later, again it is 'gosh, have the windows been closed already?'"He also detailed an extremely draining situation when he regularly reminds his partner of her deceased brother."'How is [my brother]?'Then I have to tell her again that we have buried him.She will start crying again and be very sad.But then again, five minutes later, she will have forgotten it again." He faced emotional distress when breaking the news repeatedly "for the umpteenth time [...]You often say it more concretely, you do not beat around the bush anymore that he has gotten ill or whatever.But you say, 'listen, he is dead, and your other brother is also dead, and your parents are dead, and my parents are dead, and your parents have all been cremated and scattered.And your brother has a nice grave.'" C11 and C5 stated that answering the same question has "no use" (C11) because it follows with repeated questions anyway.C8 and C12 also felt they had to mask frustration over repeated questions to appear professional.C8 said, "You will, of course, always be and stay professional.[...] but you do feel that on the inside.You know, in five minutes, they will repeat this." P8, P14, and P36 knew their repeated stories or queries frustrated others yet persisted as they were new to them.When P8's children said, "'Dad, you have already told us that, " he "will quickly shut up." But, in his mind, he had not previously told the story, so "I'll say 'yes, but there is more to it, you know?' Then you can still explain a few things."Similarly, P16 stated that she "understands that it is not fun, but I also cannot help it" when repeatedly asking her husband where the lost frozen chicken was.But to her, the question repeatedly played in her head "I cannot find it then, I have to find it.[...] How can it be that we have lost it?!? [...] I keep searching until I have found it." So, although spouses and caregivers feel increasingly frustrated with their constant attempts to reground the conversation, people with dementia still want to ask questions or tell stories since it is still new to them.

DISCUSSION
Our in-depth interviews with sixteen people with dementia, six spouses, and fourteen formal caregivers revealed that communication challenges severely affect people with dementia's performance in face-to-face conversations.In extreme instances, people with dementia are labelled as "stupid" (P2) when their current competence no longer matches their former self.This dissonance results in lowered self-esteem, comparison to others, and caution in social interactions.Moreover, people with dementia may be seen as "rude" (C7) when their conversational politeness deviates from social norms.This deviation leads to social exclusion and unexpected and disrespectful events.Additionally, people with dementia may be perceived as "uninterested" (P3) if their presented engagement in personal relationships differs from their former demonstration of care and attention.This difference can make people with dementia and their spouses feel neglected and lonely, resulting in a fading relationship.Lastly, a person with dementia may be viewed as "insane" (S4) if their presented reality diverges from what is considered normal, leading others to repeatedly correct the differences or resort to coexisting in separate realities.This study shows that people with dementia's altered self-presentation caused by communication challenges substantially affects how they perceive themselves and how others perceive and interact with them, affecting their interactions and relationships.
These results reflect Goffman's theory of self-presentation [25], where everyday interactions are influenced by how a person presents themselves.We found that in Goffman's front-stage performance, such as during group conversations and workplaces of formal caregivers, the presentation of politeness is critical as people with dementia are expected to adhere to social norms.The presentation of engagement is of higher importance in Goffman's back-stage conduct, such as interactions with spouses, as here, people have closer personal relationships and are better acquainted and thus have expectations of engagement based on prior interactions, which now may fail to come true.

Implications for HCI and Design
The implications for HCI and design are discussed to inform technology design and reflect on current practices within the HCI community [91].

Consider self-presentation in interventions addressing dementia communication.
We see that Goffman's self-presentation is critical for people with dementia's self-esteem and how others perceive and interact with them.Future HCI research on people with dementia's communication interventions should thus consider how they affect people with dementia's self-presentation in social interactions.Zhou et al. found that social robots can aid memory and word-finding, increasing perceived competence and making an audience more willing to interact with people with dementia [100].However, research also suggests that augmentative and alternative communication devices (e.g., word-selection with voice output devices) may distract people with dementia from conversations [15,23].According to our study, this distraction can demonstrate a perceived lack of engagement.Designers and researchers can support people with dementia's communication by evaluating technologies' impact on the person with dementia's self-presentation as a performance in social interactions rather than just efficiently communicating information.For instance, involve people with dementia to gauge how they feel they can present themselves to others and how their audience perceives them during interactions with technology.Struggles in self-presentation that we mentioned, i.e., appearing "stupid" vs. competent, "rude" vs. polite, "apathetic" vs. engaged, and "insane" vs. in a shared reality, can be useful in assessing various dementia interventions.
5.1.2Focus on evolving, not maintaining self-presentation.Like Birt et al. [6], our study revealed that people with dementia and their spouses expect them to maintain a consistent self-presentation comparable to their pre-dementia self.Users similarly desire an "ideal" self-presentation online, as shown in research [35,57].However, on these platforms, users also seek ways to experiment with their self-presentation without striving for consistency [35,57] and curate past content to meet current self-presentation goals [35].In contrast, people with dementia are expected to match their current self-presentation with their past self-presentation, and any discrepancies are often unwelcome.
We recommend shifting the focus from maintaining self-presentation, e.g., "by beating" or "overcoming" dementia (as described by IJsselsteijn et al. [40]), to accepting and encouraging their evolving self-presentation.One participant with dementia (P7) showed an inspiring perspective; rather than perceiving dementia as restricting his word-finding, he felt it made his language more authentic.People with dementia should be given more opportunities to positively share their evolving self-presentation rather than needing to "hide" their dementia symptoms.Some promising directions include taking portraits of people with dementia to increase their self-esteem, pride, and self-identity [33] and online platforms where people with dementia can share personal experiences and educate others about dementia [49].
We also recommend gaining inspiration from online platforms where self-presentation evolves.Snapchat encouraged experimentation and lowered pressure to align current and old self-presentation by sharing content only for a brief period without comparison to prior content [35].Therefore, we suggest reminiscence activities, which often look back at the past, to not focus too much on comparing the person with dementia's present self-presentation to their past self-presentation.Moreover, private Instagram accounts with trusted friends reduced users' fear of judgement or negative consequences of altered self-presentation [34] and similarly, online platforms with trustworthy facilitators and a non-judgmental community helped people with dementia feel more comfortable sharing "real and raw" experiences [49].Communities and technologies should thus feel trusted and non-judgemental to help people with dementia feel comfortable sharing their evolving selfpresentation.Also, success metrics of users' Snapchat posts helped them decide how to present themselves in the future [57], suggesting positive feedback from loved ones and communicative assistance may help people with dementia navigate and accept their evolving self-presentation.Lastly, in line with efforts to improve conversational agents' accessibility for people with dementia (e.g., [20,102]), agents accept users to have evolving user profiles with changing communicative abilities and a presentation of competence, politeness, engagement, and reality that evolves over time.

Help enhance mutual understanding.
The study revealed a need for mutual understanding and experiences between people with dementia, their spouses, and formal caregivers.Technologies that help people with diverse cognitive abilities to understand each other's individual experiences can help promote interaction, understanding, and empathy between them [50] and potentially alleviate our participants' sensation of living in separate realities.Sharing photographs between people with dementia and their families in daily life helps to share events and experiences [33,43,74,88], and Virtual Reality can increase people's empathy by demonstrating how dementia can alter a person's worldview [86].However, we also recommend interventions that help express subjective experiences that may not be grounded in a shared reality.Interesting directions are a theatrical performance that has helped a person with dementia bridge the gap between the reality perceived by others and her hallucinations and time-shifting experiences [65] and interactive art activities for people with dementia that give a structured, less intimidating approach to sharing a person with dementia's lifeworld [50].
Similarly, our study showed a need for mutual understanding of intentions, as when people with dementia struggle to show engagement, spouses may perceive this as intentional and feel undervalued and give up on communication, leaving the person with dementia rejected.Technologies could help people with dementia continuously portray their engagement during visits (e.g., an application that introduces engaging activities [64]).Alternatively, interventions could help reassure others that they still care even when they show less engagement in interactions.We support efforts to offer people with dementia opportunities to care for their caregiver [15,22,99] or promote equal collaboration between people with dementia and their caregivers (e.g., collaborative music [31] and collaborative cooking [80]).

Implications for Policy
As HCI researchers should work towards mitigating the gap between our research outcomes and policy recommendations [91], we provide policy implications to inform how we can increase the social inclusion of people with dementia and their caregivers.

5.2.1
Reduce stigma surrounding dementia seeking 'normal' selfpresentation.This study demonstrated that people with dementia who present themselves differently from the norm may face stigma and social exclusion by themselves and others.Similar to Milton et al. 's perspective on autism [60], we don't see dementia as a communication disorder but rather as an issue in the interactions between those with and without dementia.This issue may be resolved if we include dementia in our notion of 'normal' self-presentation.
Policies of the WHO, Alzheimer Europe, and the U.S. Department of Health already aim to reduce dementia stigmatisation by advocating for a positive representation of people with dementia at various stages [61,98] which can help counter negative perceptions [48].We recommend initiatives demonstrating to the public that people experiencing communication challenges can still be competent, polite, engaged, and share our reality.Moreover, educating the public on how dementia impacts communication and behaviour could prevent social exclusion, as some people may incorrectly perceive inappropriate behaviour as intentional rather than caused by dementia [77,85].

5.2.2
Protect spouses and caregivers from potential harm.However, we do not propose normalising all behaviour of people with dementia as some can harm formal and informal caregivers.The WHO already aims to protect caregivers through benefits, policies, and legislation [98], and the U.S. Department of Health protects people with dementia from abuse, neglect, and exploitation [66].We also stress the importance of protecting formal and informal caregivers from sexual or aggressive comments through, for instance, the WHO-proposed caregiver training [98] or technologies that help caregivers cope with challenging behaviour [44].We also emphasise the need to help formal and informal caregivers balance dementia care with self-care as, according to our study, they frequently felt powerless in addressing undesired behaviour.

Limitations
We gathered rich, firsthand experiences of people with dementia, formal caregivers, and spouses.Our participants appreciated the interview procedure involving visual cards depicting communication challenges.The cards made the topics more tangible, showed our awareness of the issues' complexity, and helped people with dementia remember and communicate.This study's limitation is that participants depended on their communication and memory capabilities to describe their experiences with communication challenges during the interview.Furthermore, all participants with dementia could verbally communicate during the interview, so the findings may not hold for people with advanced stages of dementia who can no longer communicate well.Moreover, our findings may be confined to the Dutch culture, with a specific care system and communication norms.Lastly, we did not explore pre-dementia communication and relationships or non-verbal or digital communication.

CONCLUSION
We examined the experience of dementia-related communication challenges from the perspectives of people with dementia, formal caregivers, and spouses.Findings reveal altered presentations of competence, politeness, engagement, and realities from prior selfpresentation and social norms.The results highlight the need for communication interventions to consider how people with dementia desire or are expected to present themselves versus how they appear to others in everyday interactions.Moreover, we suggest a shift in dementia communication design, focusing on accepting and encouraging evolving self-presentation rather than maintaining it.Interventions should also help create mutual understanding between people with dementia and their loved ones about their intentions and experiences.Policies should help reduce the stigma surrounding dementia-related communication challenges to improve social inclusion.Training and interventions are also needed to protect spouses and formal caregivers from the harm of inappropriate communication.Change is inevitable, and we must find ways to accept the changes in people with dementia's self-presentation.

Figure 1 :Figure 2 :
Figure 1: Visual cards; structure cards (left) and prompt cards (right) Dementia-related Communication Challenges (CC) CC1 Asking the same question or telling the same story multiple times CC2 Starting to say something and then forgetting what you were talking about CC3 Talking too much at inappropriate moments CC4 Using inappropriate language such as curse words or sexual language CC5 Suddenly changing the topic of the conversation CC6 Struggling to start or keep going a conversation CC7 Struggling to come to the right words CC8 Often using empty words such as 'thing' and 'you know' CC9 Not understanding words of other people CC10 Not remembering past events mentioned in conversations CC11 Talking with imaginary people or things CC12 Struggling to pronounce words CC13 Not hearing conversations properly CC14 Not being able to follow a conversation CC15 Saying sentences that are grammatically incorrect CC16 Not recognising familiar people during interactions CC17 Describing misremembered events

Table 1 :
15 Dementia-related communication challenges based on Powell et al., Klimova et al., and Savundranayagam et al.