Abstract
Photovoice is a participatory research method that allows people to capture their voices and perspectives through photographs. This method may be especially advantageous when working together with people living with dementia (PLWD), as they may experience cognitive and linguistic challenges. However, participatory research often raises everyday ethical dilemmas that can be difficult to navigate in practice. This article explores the backstage processes encountered during a photovoice study with community-dwelling PLWD. Field notes, recorded conversations, and notes from reflexive discussions revealed that dilemmas centred on the assumption of the autonomy of voice and a focus on verbal and rational communication. The dilemmas we discuss in this paper are subdivided into two interconnected themes: a) a misfit between the methodological procedures of photovoice and the embeddedness of the voices and b) a misfit between a need for empathic attunement with people living with dementia and a more rational, goal-oriented research approach. By bringing these ‘backstage’ processes to the forefront, this article aims to contribute to critical reflections on the photovoice process, specifically regarding its methodological features and the outcomes of participation for PLWD. Our examples demonstrate how ignoring voice as a relational, social, cultural, and material process, and disregarding non-verbal, affective, and embodied forms of communication creates everyday ethical issues and limits insight into the lifeworlds of co-researchers living with dementia. Furthermore, we show that navigating these backstage processes requires a relational and aesthetical approach, rather than a technical methodological solution.
Introduction
As societies age, the number of people living with dementia (PLWD) continues to increase (Alzheimer Europe, 2019). Dementia involves progressive changes in cognitive and functional abilities, often manifesting as memory loss, personality changes, and/or functional challenges (Wilkinson, 2002). Historically, dementia is highly stigmatized (Alzheimer Europe, 2019). Despite ongoing efforts by PLWD, their families, researchers and healthcare professionals to challenge these negative perceptions, stigmatizing narratives persist (Bosco et al., 2019). Consequently, the voices of PLWD remain marginalized across many domains of social life (Bottenberg, 2022). This exclusion extends into healthcare research, where PLWD are often positioned as research subjects rather than as partners in knowledge production (Alzheimer Europe, 2019).
The systematic devaluation of the voices and ways of knowing of particular groups has been conceptualized as ‘epistemic injustice’ (Fricker, 2007). In the context of dementia, epistemic injustice occurs when PLWD are perceived as less competent due to their diagnosis, resulting in the dismissal of their perspectives and communicative expressions (Wilkinson, 2002). In practice, this means that although PLWD are capable of articulating their experiences, prevailing assumptions frequently position them as incapable of doing so, thereby limiting their autonomy and excluding them from research and decision-making processes (Sabat, 2006).
Academic and professional settings often remain poorly equipped to promote epistemic justice for PLWD (Cahill & Diaz-Ponce, 2011; Groot et al., 2023). Standardized consent procedures typically rely on cognitively and linguistically demanding assessments of capacity, assent and dissent, limiting researchers’ ability to involve participants inclusively. For example, these procedures do not ensure people’s active engagement in the research process, nor do they account for non-verbal communication (Swarbrick et al., 2016). Similarly, traditional research methods such as semi-structured interviews assume a high degree of verbal autonomy and offer participants limited influence over the direction of the conversation. Consequently, researchers may fall short in capturing the perspectives of PLWD and in supporting their autonomy and inclusion (Murphy et al., 2015; Swarbrick et al., 2016).
To address these limitations, several scholars have proposed relational and participatory strategies that increase involvement of PLWD in research (McKeown et al., 2010; Murphy et al., 2015; Novek & Wilkinson, 2019; Swarbrick et al., 2016). They underscore the ongoing nature of consent through periodic check-ins, the importance of establishing rapport, and the need to support participants in making meaningful contributions. Furthermore, these authors advocate integrating observational data and contextual material with participants’ narratives and accounts from significant others. This echoes the democratic knowledge production of participatory action research (PAR) (Groot & Abma, 2021), which seeks to enhance individuals’ awareness of their circumstances and social position and promotes mutual learning, capacity-building, and collaborative efforts to address common challenges (Abma et al., 2019; List, 2006).
In addition to relational and participatory approaches, several scholars highlight the value of incorporating creative, visual and sensory methods (Abma, 2020; Groot et al., 2023; Swarbrick et al., 2016). One such method is photovoice; a creative participatory research strategy that enables people to capture issues with photographs rather than explain them with words (Wang & Burris, 1997). By stimulating critical reflection and collective dialogue about the pictures and the issues they reflect, the method offers participants control over identifying and framing research topics. The reflections and group discussions that emerge during this process help deepen awareness of community strengths, issues and needs. As these insights are communicated through both text and photographs, they become readily accessible to policymakers and other stakeholders (Evans-Agnew & Rosemberg, 2016). Within existing literature, photovoice is increasingly recognized as a valuable approach for research with PLWD, providing in-depth insight into their lived experiences, promoting awareness of personal and collective strengths, and challenging stigmatizing stereotypes (e.g. Bardach et al., 2020; Phillipson & Hammond, 2019; Seetharaman et al., 2021).
However, in practice, creative participatory research strategies can be ‘messy’ and complex. Beyond tension with procedural ethics (Novek et al., 2012), researchers frequently encounter everyday ethical dilemmas involving power-sharing, ownership, collaboration or responsibility (Banks & Brydon-Miller, 2019). Cornish and colleagues (2023), for example, argue that PAR is inherently messy as it unfolds in real time within unequal power relations, shifting collaborations, and unpredictable social contexts, requiring ongoing negotiation between competing interests and agendas. Researchers must navigate institutional priorities, mitigate the risk of co-option, address power inequalities within research teams and internally diverse communities, and accept the unpredictability that comes with sharing control over the research process with co-researchers. These everyday ethical dilemmas align with what Goffman (1959) describes as ‘backstage processes’: dynamics that expose the contradictions, frustrations and improvisations hidden by polished ‘frontstage’ performances. They are inconsistent and fragmented and show how frontstage coherence is sustained through continual behind-the-scenes adjustment and negotiation (Goffman, 1959).
With regard to photovoice with PLWD, backstage processes have been noted in relation to how cognitive and physical challenges impact consent procedures, camera use, group discussions, and involvement during dissemination and the interpretation of results (Abma et al., 2022; Campbell et al., 2023; Evans et al., 2014; Genoe & Dupuis, 2014; Guerra et al., 2011; Seetharaman et al., 2021). These dynamics are not thoroughly explored yet relevant in light of the participation of PLWD within photovoice and photovoice’s promise of social change (Cornish et al., 2023). This study reflects on the everyday ethical dilemmas encountered in a photovoice project exploring meaningful daytime activities with community-dwelling PLWD. These dilemmas center on how photovoice can promote critical dialogue, empowerment and social change when co-researchers cannot fully control the photographic and discursive processes that shape the outcomes. By examining these challenges, this study aims to contribute to the critical dialogue regarding photovoice as a method with people with dementia.
Methods
Study Context
The photovoice study presented in this paper was part of a larger project titled Meaningful Daytime Activities for Community-Dwelling People with Dementia, which aimed to support Dutch municipalities in developing activities tailored to the needs of PLWD. As part of this effort, a knowledge synthesis was conducted to identify barriers, facilitators, and underlying mechanisms shaping meaningful daytime activities. To ensure that the perspectives of PLWD were included, a photovoice project was incorporated.
This photovoice study was conducted by a team comprising an artist with a background in cultural sociology and social demography, an artist-photographer experienced in photovoice across diverse groups (including children, care staff, and older migrants), and a professor with expertise in the medical humanities.
The study took place over seven months (November 2024 to May 2025) in Rotterdam. Rotterdam’s diverse population (Sociaal Cultureel Planbureau, 2020) allowed us to explore a wide variety of needs and preferences among PLWD. Additionally, all researchers were based in Rotterdam, which facilitated contact with gatekeepers and access to a varied participant group.
Sampling Procedure and Recruitment
In the Netherlands, daytime activities for community-dwelling PLWD are typically organized in day centers that can be attended one to five days a week. These centers offer structured activities and workshops, provide beverages and lunch, and include professional caregivers and medical staff. In Rotterdam, many centers cater to specific populations, such as individuals with a Dutch Caribbean background or those with young-onset dementia, tailoring activities accordingly. As activity preferences tend to relate to background characteristics (Roose et al., 2012) we approached six centers representing different populations.
After initial face-to-face visits, we held follow-up meetings with interested centers to explain our aims and methods, outline the consent procedure, and distribute information flyers with our contact details. Ultimately, we were granted access to four groups across four centers: 1) a ‘general’ group with relatively lower socioeconomic status; 2) a group for individuals with young-onset dementia; 3) a group for people with a theoretical educational background and 4) a group for people with diverse ethnic backgrounds.
After gaining access, we visited each group to introduce the study, discuss consent, and engage with group dynamics by joining activities and practicing camera use alongside participants. Those interested in taking part were invited to smaller, more personal sessions where we discussed the study’s aims, methods, and consent procedures in detail. Participation was confirmed collaboratively, in consultation with the participants, care staff, and legal guardians.
Purposive sampling was used to ensure variation across age, gender, cultural–ethnic background, profession, living situation (alone or with a partner), diagnosis, dementia stage (mild to moderate) and capacity to consent. To reflect local cultural–ethnic diversity, we aimed to also include individuals with at least one parent born in Indonesia, Turkey, Morocco and/or Suriname/the Dutch Caribbean, as these are the largest migrant-origin communities in the Netherlands (CBS, 2024).
Sample
Participant Characteristics by Group
Note. Age ranges are reported when exact ages were unavailable. Professional background categories are based on ISCO-08 major groups (ILO, 2012). M= Male, F= Female, WP = living with partner; NA = not applicable.
Method of Data Collection
Stages of Engagement
Note. The table summarizes the sequential stages of engagement with participating centers and co-researcher groups. Activities varied by phase and did not apply uniformly across groups. “Walk-and-talk” refers to mobile interviews conducted in co-researchers’ familiar environments. “Not applicable” indicates stages that occurred prior to group-specific recruitment.
Implementation: Photovoice and Additional Methods
Photovoice is committed to using co-researchers’ perspectives as a vantage point, inviting them to autonomously photograph pressing (community) issues, strengths or a specific theme. In our project, however, taking a camera home proved difficult. Using the camera was technically challenging, the notebook prompts were unclear without context, and we felt that many photographs reflected ‘socially desirable’ activities, such as puzzling or exercising. Additionally, we gained little insight into how co-researchers experienced the day centres, even though these places played a major role in their lives. Finally, as we tried to discuss the topics in the photos in group sessions, their meaning was sometimes forgotten, probing caused tension and distractions from fellow group members often interfered with our conversation. These issues are further detailed in the Results section.
Within PAR, researchers are encouraged to adapt study designs to the needs of co-researchers (Abma et al., 2019). This also applies to dementia research. The COINED Model (Swarbrick et al., 2016), for example, encourages adapting research activities to individual co-researchers’ needs through ongoing, trust-based interactions. Flexibility is enacted via dialogue, negotiation, and collaboration, ensuring participation is supportive, ethically attuned, and shaped by co-researchers’ experiences, abilities, and preferences. In line with these principles, we revised our approach to support both the photography and interview process. Rather than giving co-researchers cameras to take home, we situated photovoice within the centers and their immediate surroundings. We reasoned that integrating photovoice into existing routines would minimize disruption (Nolan, Enderby & Reid, 2002) while familiar settings and the presence of professional caregivers ensured comfort, safety and support.
Additionally, to provide a more flexible and less confrontational alternative to traditional interviews or focus groups, we conducted 15-20-minute ‘walk-and-talk’ sessions. To allow sufficient time for relationship-building, familiarization and individualized support, sessions were held with small groups of two to three co-researchers at a time. During these sessions, we assisted with technical issues, co-created photographs with co-researchers, discussed their topics, and attended to both verbal and nonverbal cues. The walks started at the day centers and took place either within the centers or their surrounding public spaces. Discussions about the photographs started during our walks but would occasionally continue in the communal living areas.
The ‘walk-and-talk’ approach offered three main advantages. First, it allowed us to provide co-researchers with immediate context for our presence and the photographic activity we engaged in, helping them understand and situate the research process if needed. Second, it enhanced engagement by allowing immediate support with camera use and enabling real-time discussion of images and topics as they emerged. Third, the integration of movement and familiar surroundings made it easier to address sensitive topics, as conversations felt more natural and less formal, with co-researchers showing us their environment and meaningful spaces and guiding the pace, focus and content of our conversations. The Result section reflects on the experiences and dilemmas we encountered throughout this process and the approaches adopted to navigate them.
Alongside adapting the photovoice process, we refined our interview strategy to better address the overarching research question: ‘Which activities do you consider meaningful in your daily life?”. Preliminary discussions with co-researchers indicated that the term ‘meaningful’ (Dutch: betekenisvol) was perceived as overly abstract and potentially ambiguous, whereas ‘important’ (Dutch: belangrijk) was more readily understood, enabling co-researchers to articulate their experiences more easily. Additionally, as the study aimed to inform municipalities on strategies to support meaningful activities for community-dwelling PLWD, it was considered essential to explore not only the content of activities perceived as ‘meaningful’ or ‘important’ but also how environmental and contextual conditions shape or support their significance. To this end, we operationalized the research question into two interrelated and more concrete interview questions, using ‘important’ as a more accessible proxy for ‘meaningful’, while maintaining a conceptual focus on activities and contexts perceived as significant in daily life. These questions were: a)‘What do you consider important in this space’ (referring to the day centers and their surrounding environments), and b)‘What do you consider to be important to do?’ (referring to activities perceived as important or meaningful). This refinement facilitated more accessible and situated responses, allowing us to examine both the substantive content of meaningful activities and how the setting shapes or supports meaningful experiences.
Throughout the study, we maintained a logbook and engaged in monthly critical reflection sessions to examine how our position shaped our interpretation and decision-making (Abma et al., 2019; Braun et al., 2023). Fieldnotes were systematically recorded during all sessions, and the first author carried out in-depth interviews with one professional caregiver at each center. In addition, the photographer documented activities and created portraits of interested co-researchers, inviting them to physically express how they felt at the centers, resulting in a series of expressive portraits. The photovoice procedure was thus supplemented with additional methods, consistent with arguments for a multi-method approach when working with PLWD (Smith & Phillipson, 2020). Figure 1 visualizes how the different methods interrelate and build upon one another. Implementation of photovoice and complementary methods
Note. The figure illustrates the implementation of photovoice and complementary methods, showing the sequential adaptation of the photovoice methodology. Home-based photography revealed practical and conceptual challenges, prompting walk-and-talk sessions at the day centers, supplemented by caregiver interviews and expressive portraits. Fieldnotes, documentation of activities, a logbook, and monthly reflexive discussions were conducted throughout the research process.
Ethical Considerations
The project was approved by the Ethical Review Board of Erasmus University (ETH2425-408). At the start of our research, we had conversations with (in)formal caregivers about the consent procedure and research goals and aims. We also left flyers with similar information and our contact details at the centers.
Concerning consent and participation, we formalized ourselves with established ethical guidelines and strategies, including the CORTE guidelines (Murphy et al., 2015). Consistent with recommendations by Phillipson and Hammond (2019), we considered the co-researchers’ stage of dementia (mild to moderate) and assessment of formal capacity for consent involved consultations with professional caregivers and, where applicable, legal guardians as well as input from co-researchers themselves.
Written consent was obtained from co-researchers and/or legal guardians prior to and during the second group meeting, and involved explaining the study’s aims, procedures and confidentiality measures, including the limits to confidentiality when photographs are displayed in an exhibition context.
In addition to written consent, we implemented process consent (Murphy et el., 2015) recognizing that short-term memory challenges associated with dementia may affect ability to provide informed consent (Webb et al., 2020). Ethical practice and meaningful inclusion therefore require that consent prioritizes the rights and autonomy of co-researchers rather than serve as a procedural formality. Following Murphy et al. (2015), process consent involved confirming each co-researchers’ willingness to participate at each session and discussing participation with professional caregivers. Building familiarity with co-researchers and learning to interpret their specific ways of communication and their contextual positioning were important parts of this and involved attending not only to verbal expressions but also to body language and power dynamics.
To allow sufficient familiarization, we worked with no more than three co-researchers at a time. To avoid confrontational interview settings, questions were embedded within casual conversations and co-researchers were encouraged to guide the topics and depth of discussion. Finally, photovoice data were complemented with interviews with professional carers at each center and fieldnotes to deepen our understanding of co-researchers roles and relationships within their context.
In addition to obtaining approval for the project activities, we also received approval from co-researchers and other stakeholders to publish all photos included in this publication. Individuals photographed who did not participate in the project have been anonymized. Co-researchers and their legal guardians were informed that the images might be printed. The co-researchers expressed a clear wish to be shown and act as a voice on behalf of PLWD viewing this visibility as an important expression of contribution, agency, and ownership. Throughout the process, ethical guidelines and team discussions helped us address questions of responsibility, ethics, and power.
Data Analysis
The transcripts from the photovoice sessions and interviews, together with the fieldnotes and notes from monthly critical reflection sessions were analyzed with ATLAS.ti using reflexive thematic analysis (RTA) (Braun et al., 2023). RTA is a flexible qualitative analytical method aimed at identifying, interpreting, and constructing patterns of shared meaning, or themes, across a dataset. It acknowledges that themes are constructed by the researcher rather than discovered and therefore requires researchers to reflect critically on their positionality and articulate how their interpretations were developed (Braun et al., 2023).
Results
This section presents our findings, drawing on notes from reflective discussions about our actions and experiences, field notes and transcriptions of the photovoice sessions. The findings focus on dilemmas organized into two interconnected themes: a) a misfit between the methodological procedures of photovoice and the embeddedness of voices; and b) a misfit between a need for empathic attunement with PLWD and a more rational, goal-oriented research approach.
Dilemmas Related to the Embeddedness of Voices Vs the Photovoice Method
Within this study, the photographic and narrative activities took place within the context of daycare centers, each of which had strict routines, specific group compositions, and particular rules for using the space. As a result, the photography sessions and conversations were shaped by time frames, the characteristics of the relationships among those present, and the spatial context, such as parks, gardens, or kitchens. For instance, photographing around lunchtime often prompted co-researchers to capture meals or people preparing food. Similarly, during group discussions, the contributions of more dominant co-researchers appeared to shape the responses of less dominant or less vocal members, who generally seemed to follow their lead. Additionally, our own interpretations of co-researchers also significantly shaped the stories and images produced. Voices seemed always embedded in distinct socio-cultural and spatial context, however, as we focused on independently chosen stories and pictures, we experienced this embeddedness as a dilemma. This will be illustrated with two examples below.
Picturing Stories?
Challenges in interpreting the photographs arose frequently, often due to communication difficulties. When this occurred, we were sometimes uncertain whether to include the pictures. We noticed that discussing the subjects of the photos, either one-on-one or in group settings, could provide insight into what co-researchers considered meaningful. However, understanding their significance required us to read between the lines of what people said and make interpretative assumptions. Consequently, we were never entirely sure whether our interpretations accurately reflected the intended meaning of the co-researchers’ photographs.
For example, a co-researcher who had initially been hesitant to take any pictures, and about whom we were unsure whether our question was clearly understood, suddenly paused in front of a tall, brownish building with large iron dots on its side. She pointed to the building and stated very firmly, ‘Yes, I would like to take a picture of this.’ We took the picture together; she determined the frame, and one of the researchers pressed the button (Image 1). When we asked her why she wanted to take a picture of this building, she said: ‘Yes, well, I don’t know, I like it, I think it is beautiful. There are so many different buildings here, I just think it is extraordinary.’
As this unfolds, we are unsure how to interpret her voice in relation to our interview questions (what do you consider to be important in this space’, and ‘what do you consider to be important to do)’. Does she genuinely value the variety of buildings? Is something else at play? We are particularly puzzled given that she had previously remarked: ‘If there is anything I am not, it is someone with a camera.’ For someone not familiar with photography, this picture, which shows a rather abstract building, seems a notably aesthetic choice, even art-like. We feel as if such frames or topics would more likely be chosen or created by individuals who are more familiar and comfortable with the medium of photography. Perhaps the setting of us pressing the button and the unfamiliarity with photography, caused this distinct framing. Or, for her, beauty is an essential value, and she feels that this building or the dots are indeed beautiful. Another possibility is that the building represented something else. She mentioned that she loved the city’s architectural diversity, but what exactly does she mean by that?
Since we do not know what the best course of action would be in light of photovoice’s method, we try to gain more information regarding the importance of the image. However, its significance seems to have been lost as she ignores our question and walks on. Did she perhaps not want to discuss it further? Maybe she had forgotten that we photographed the building or, perhaps, our question felt intimidating? Here, we struggle with interpreting the meaning of the photograph and her voice. She clearly stated that she wanted a picture of the building as she found it ‘beautiful’ and liked ‘the many different buildings’ in the city. This building seemed to symbolize these aspects, and the moment, with her stopping and insisting on taking the photograph, appeared to be significant. This co-researcher had not been so clear on a topic before and, even more so, was uncertain about the medium of photography. That she initiated this photograph with enthusiasm underscores its significance to us, but we struggle to relate her story to the picture.
We are inclined to emphasize her enthusiasm for ‘beauty’ or ‘aesthetics’ (the building, architectural variety) and diversity, and wonder whether aestheticism is an essential value to her. However, we are far from sure. Additionally, as she discussed her appreciation for the city’s diverse architectural landscape, we also wonder whether this statement holds a deeper meaning. Maybe her liking of the variety of buildings stands for something else? When we try to discuss the picture again a few moments later during our walk, with the building itself out of sight, the picture and our question are ignored and she starts talking about something else. It is possible of course that the physical building prompted the reaction. If this is the case, going back might offer some insight into the meaning that prompted her sudden enthusiasm. Yet, due to time constraints, we are unable to tag along on another walk and we remain in doubt.
When we arrive back at the center, we discuss the images everyone has made in the group and notice that the co-researcher who took the picture of the building did not choose this picture for the discussion. Instead, she chose a picture of the group together in front of the daycenter and a picture of trees in the park. Both these pictures were made by the researchers, who also explicitly ‘nudged’ towards picturing these scenes. Yet, when we talk about the group picture, the co-researcher suddenly states: ‘’oh look, I am standing between the others, it is here. Yes, and the city right, it is all so different here, there are different buildings, different people, yes, very nice.”
When someone else in the group highlights that it was wonderful for her to see so many different people living in the city harmoniously, the co-researcher who created the picture of the building seems enthusiastic and agrees wholeheartedly. She says: ‘Yes! It (the city) is from everything and everyone, truly. My daughters also live here, and they say that you cannot have a better place, and I agree. (…) So many different buildings, so many different people, yes, very beautiful.
Since this co-researcher clearly initiated the picture of the building herself, which was special as she had not done that before, and as she also seemed to be engaged by the topic of city life and city buildings, we decided to hold on to it as a representation for the meaning that she appeared to attach to ‘city life’: aesthetics, architecture and diversity within the city. However, the image itself did not seem to move her anymore, given that she had not chosen it, and we were somewhat unsure whether we could link it to our interpretation. Considering that we are working with photovoice, the use of photographs that people themselves find meaningful seemed essential, as pictures needed to serve as prompts that help find and communicate about issues at hand. Yet, in this case, it was mainly our interpretation of the picture's context that allowed us to get to know this co-researcher a bit better. Her previous stories, the walk in the park and group dynamics allowed us to interpret something that may be meaningful to her. Hence, while the image itself was no longer representative, it had in fact functioned as a prompt, focusing our attention on her enthusiasm for ‘city life’. Since we sought to gain insight into which activities and aspects of the space were considered essential, this seemed important within our study. The building representing ‘city life’
Telling Pictures?
Because taking pictures autonomously remained a challenge throughout the project, we felt that the meaningful issues co-researchers often discussed were not always captured on camera. This meant we missed critical photographic prompts that could have provided further insight into what people found meaningful to do. To resolve this, we decided to intervene and slightly steer the photography process towards capturing specific objects or scenes that the co-researchers had defined in earlier conversations as meaningful. In practice, this meant that when we came across an object or scene that had been mentioned earlier as important, we invited co-researchers to reflect on their feelings about it and confirm whether the object or scene held particular significance to them. When co-researchers confirmed, we would follow up to ask whether they wanted to include a photograph of the scene or the object in the study, after which we reiterated the study's objectives. In these instances, co-researchers would often tell us, ‘Yes, you do it,’ prompting us to take the picture. This resulted in images that predominantly convey our interpretation of what co-researchers considered significant in their stories and their surroundings.
An example is a co-researcher who tells us that he wants to participate ‘as usual’, that he is very fond of the group and that he enjoys caring for the group. He stated: ‘Look, what is important is that you can participate and contribute like you always did and that you can be part of something. Here, we are all equal and we also care for each other’. (…) It is just cozy here, and we are together (…) here, we can help each other’
We had noticed before that this co-researcher was always very concerned about ensuring everyone in the group was happy and no one was left out. During group walks, he also seemed very engaged in keeping the group together and lending a hand whenever possible. For example, when someone used a wheelchair, he would be the first to help out. Or, when someone was lonely, he would spend extra time with this individual. For us, it feels as though the ‘role’ of maintaining a positive group atmosphere and helping people within the group is meaningful to this co-researcher. Therefore, when walking past the group during a market visit, right after he finishes his sentence with ‘we care for each other’, we ask him if he would like a picture of the group as a symbol of what is essential for him at the day center. When he says yes, one of us takes the picture (Image 2) which we then label as significant for his desire for belonging and caring, as well as for the meaning he assigns to having a function or role within the group. However, this co-researcher did not himself propose the idea of a group picture, and we do not know whether the way we labelled the picture aligns with his perspective.
We wonder what to do as we recognized that by guiding this process, we, as researchers, were implicitly setting criteria for what counted as meaningful, potentially excluding certain perspectives and experiences. This presented an important dilemma and to address this, we grounded our interpretations as best we could in field observations, conversations with co-researchers and care staff and reflexive team discussions, aiming to develop a nuanced understanding and to focus on the themes most prominent in our interactions with co-researchers. Upon re-checking our field notes and re-reading and analyzing our transcripts, we believe our interpretations are fitting. Yet, at the same time, we run the risk of ignoring co-researchers’ voice.
In photovoice, co-researchers are asked to take pictures of topics they find meaningful, then choose one to elaborate on further. Here however, stories inform pictures, and these stories are predominantly grounded in the context in which we work and in our interpretation of the co-researcher’s voice. Both dilemmas thus show that photovoice with PLWD is far more complicated than the originally described one-to-one process of taking a picture and telling a story. Instead, photovoice emerges as a multi-layered process involving continual movement between context, stories, images and interpretations, with ongoing reflection on one’s positionality. We engaged in brief, reflexive discussions for our logbook after meeting co-researchers, and later explored these reflections more thoroughly as a team.
The two dilemmas also reveal how our voices and the co-researchers’ voices are entangled with the surrounding context. When collaborating with co-researchers with dementia, dedicating sufficient time to building relationships and understanding the group context proved essential for fostering respectful connections and grasping this entanglement. ‘The group’ during a visit to the Friday Fish Market
Dilemmas due to the Misfit Between an Emphatic Approach Versus a Goal-Oriented Research Practice
Because we were not always able to fully understand the co-researchers’ statements, and the intended meaning behind photographs was often forgotten, opportunities to clarify the significance of particular images or stories were sometimes lost. As a result, we were left with numerous images lacking accompanying narratives and many narratives without corresponding images. In such cases, these images and stories were generally excluded from the analysis. However, our group of co-researchers was relatively small, and we felt as if some people had only one picture that conveyed a clear story. Given a clear deadline, we experienced pressure to ‘fit’ the findings into a photovoice format as soon as possible. Looking back, we risked overburdening and disempowerment by doing so. This dilemma is illustrated below with two examples. The first one shows how we failed to be sensitive to bodily cues and vulnerabilities and were unable to emphatically attune to a co-researcher’s needs, leading to stress and disempowerment. The other one highlights how our inability to step back and engage with co-researchers and the unfolding context limited our understanding as to what was actually happening in practice, narrowing our view and ignoring photovoice’s potential.
Focusing on Needs or Focusing on Results?
Throughout the process, we were two relative strangers repeatedly asking co-researchers about the meaning of images they had taken. For co-researchers experiencing short-term memory challenges, this type of probing may have been distressing. It could have confronted them with the discomfort or stress of being unable to provide a “correct” or “normal” answer to what may seem like a simple question, potentially reinforcing feelings of abnormality or a diminishing sense of control over cognitive functions. In the context of already increasing cognitive difficulties, our actions may have amplified experiences of self-doubt, anxiety, and sorrow. We tried to be highly aware of this and approach co-researchers sensitively and respectfully. Yet, while we made efforts to remain sensitive and respectful in our approach, we ultimately felt unable to fully prevent distress.
A situation like this occurred, for example, when one participant photographed a ‘bakfiets’ (a bike with an extra transport platform in front). To learn more, we asked the participant why she had made the picture. She replied with: ‘Yes, yes, well, I don’t know actually, no, I don’t know, no, no’
When we later asked again, as if she felt socially compelled to come up with an answer, she stated, noticeably hesitantly: ‘Well, it must have been due to the color.’
We wanted to learn more and continued probing, asking whether she could tell us a bit more about the picture and the color. However, right after we posed this question, she appeared uncomfortable. She nodded but remained silent. Another co-researcher suddenly said something which drew our attention, but we noticed that the co-researcher who had taken the picture of the bakfiets silently retreated from the conversation. We felt that by ‘pushing’ her, we prioritized our need for results over the needs of the co-researchers. By doing so, we had failed to provide a safe environment and disempowered this co-researcher.
Looking back on this, both researchers present got the impression that, during our walk, this co-researcher had already been hesitant. She would often ignore our questions and distance herself from us. We both felt that she appeared slightly uneasy with our questions and the photography process, and we realized that, during our walk, we had ignored her embodied cues as we had frequently nudged her to take photographs and tried to engage in conversations. Additionally, we felt that the photo of the ‘bakfiets’ was somewhat forced, as it was taken at a moment when everyone had a camera and was asked to capture something meaningful simultaneously. Perhaps the fact that everyone else was taking a picture prompted her to take one as well.
Micro Wins Versus Macro Outcomes
At the start of the photovoice process, we aimed to develop arguments together with the co-researchers in order to empower them and raise community awareness. In our view, this was an important aspect of photovoice and would benefit the co-researchers. However, this required independent pictural input and explicitly verbal cognitively moderated communication. Hence, along the way, we felt that ‘developing arguments’ and ‘raising awareness’ required a different approach and we often wondered what we even gave the co-researchers. Through interviews, conversations, and field observations, we felt we gained insight into what they considered meaningful regarding daytime activities. However, in our minds, we had failed to accommodate photovoice’s underlying goal of social change. Looking back, we realized that by dogmatically focusing on the format of the method -communicating salient issues, developing community awareness and arguments-we overlooked something very significant, which was that the activity of photography in and of itself seemed to provide moments of connection, joy, recognition and trust which were in and of themselves meaningful for both the co-researchers, as well as us.
For example, regarding connections, co-researchers created photographs and occasionally reflected on them during group discussions or in one-on-one conversations with another co-researcher. These interactions appeared to foster new forms of engagement, providing insights into each other’s lives and perspectives. Moreover, sharing experiences and stories can be a vulnerable process, and we felt that the discussions were valuable for reinforcing trust and connection among group members. Additionally, most co-researchers very much enjoyed creating pictures. People laughed, made funny faces, and acted out all kinds of funny or ‘weird’ poses together for numerous selfies (Image 3). Hence, making pictures stimulated moments of joyful connection, recognition and trust. Additionally, we got the impression that some co-researchers felt seen by us, and that this was meaningful to them. When we talked with them, they were the protagonists who had our undivided attention.
It did not matter that these moments lasted only a short while. They did happen and in the here-and-now, they seemed meaningful on both an individual and a group level. For us, focusing on meso- or macro-outcomes made us feel like we underdelivered as we aimed for social awareness of issues that mattered. However, looking back, this was a very naïve vantage point that effectively overlooked the agency and the (very loud) voices of co-researchers themselves. Having fun with the camera
Discussion
PLWD are underrepresented in health research (Groot et al., 2023). We used photovoice as an alternative participatory and creative approach (Bardach et al., 2020; Seetharaman et al., 2021), complemented by interviews, fieldnotes and reflexive diaries. In this article, we focused on the messiness of the process and reflected on several ‘everyday ethical dilemmas’ encountered during our photovoice project. These dilemmas center on the question of how photovoice can promote critical dialogue, empowerment and social change when co-researchers cannot fully control the photographic and discursive processes that shape the outcomes. Underlying this question is the assumption of the autonomy of voice and a reliance on verbal, rational communication or ‘thin voice’ (Carnevale, 2020, p. 2).
Our findings demonstrate that the voices of PLWD are entangled within their social-cultural-material context or ecology, including the voices of the group and researchers. This puts the original setup of photovoice in perspective: it is not a ready-made process of someone taking a picture and telling a story, but rather a multilayered and reflexive practice. Overlooking the embeddedness of voice and disregarding nonverbal, affective and embodied communication generates ethical dilemmas, constrains understanding of the lifeworlds of co-researchers and risks perpetuating epistemic injustice.
The dilemmas we discuss are organized into two interconnected themes: a) the misfit between the methodological procedures of photovoice and the embeddedness of the voices; and b) a misfit between a need for empathic attunement with PLWD and a more rational, goal-oriented research approach.
Regarding the first theme, the misfit between photovoice and the embeddedness of voices, our challenge of linking pictures and stories stemmed largely from our reliance on rational, autonomous verbal cues. Similar issues, particularly regarding member checks, technical difficulties and co-creation, have been noted in the literature, with suggested strategies including adapting questions, involving significant others, building rapport, and repeated observation (e.g. Genoe & Dupuis, 2014; Guerra et al., 2011; Seetharaman et al., 2021). Our findings extend this by highlighting that co-researchers’ voices are deeply embedded in their distinct relational, social-cultural, and material surroundings. To ‘hear’ voices, we needed to interpret them in relation to their context, such as biographies, group roles and interactions, power dynamics and the cultural and material features of the spaces in which they were situated.
When people experience cognitive and linguistic difficulties, articulating needs or experiences can be challenging. Interpretation of stories, sentence fragments or gestures then becomes crucial and necessitates recognizing voices as embedded within a dynamic relational social-cultural and material context (Cornish et al., 2023). Carnevale (2020) therefore proposes the notion of ‘thick voice’ as an alternative to ‘thin’ understandings of voice that treat expressions as isolated, individual acts. Thick voice understands expressions as meaningful within their relational and contextual horizons. It included both what is said and unsaid and aims to capture the richness, ambiguity, and situatedness of co-researchers’ perspectives, acknowledging that experiences are always morally, relationally and culturally grounded. Our findings detail what this looks like in practice and how precarious this can be.
Listening to ‘thick voice’ requires rethinking what counts as ‘voice’, how we understand it, and how we research it. A thick conception of voice presupposes that meaning emerges intersubjectively through embodied, relational and contextual processes. This aligns with phenomenological accounts of empathy, such as empathic perception (Zahavi, 2014), which emphasizes understanding through embodied attunement rather than cognitive interference alone. In dementia studies, similar ideas are expressed in work on embodied selfhood (Kontos, 2005), showing how PLWD communicate through gesture, affect, rhythm and interactional flow even when verbal capacities decline. Thick voice also reflects care ethics (Tronto, 2005), which situates moral knowledge within relationships of vulnerability and responsibility.
Our second theme concerned the tension arising from the mismatch between the need for empathic attunement and a predominantly rational, goal-oriented research approach. The examples presented illustrate how inflexible research designs can generate friction between the needs of co-researchers and the formal requirements of the research process. As academic researchers trained in goal-oriented and comparatively distanced modes of working and constrained by institutional time pressures and agendas (Loveday, 2018; Sandel, 2012), we sought to produce outcomes aligned with photovoice methodology within a predetermined timeframe. This orientation directed our efforts towards the rapid production of verifiable outcomes, namely pictorial and linguistic forms of ‘evidence’ with a narrow focus on images and narratives deemed most likely to support empowerment and social change.
Despite our methodological adaptations, our goal-oriented approach caused us to overlook meaningful interactions. Initially, events that did not fit our preconceived expectations of photovoice were too easily ignored, inadvertently disregarding co-researchers’ agency and the significance of what they were communicating, and causing distress. Additionally, our emphasis on ‘big change’ also obscured smaller yet meaningful moments unfolding throughout the process. In these instances, we failed to do right to epistemic justice. Only later did we recognize the intrinsic value of the photographic activity itself. The joy of being in the city and the unfolding moments of connection appeared significant in and of themselves, requiring us to reconsider our ambitions for macro change.
Failing to attune to co-researchers’ needs is particularly harmful in research involving PLWD. As their ability to influence- and cognitively distance themselves from situations declines, PLWD become increasingly dependent on the caring attention of others and more susceptible to atmospheres (Sonntag, 2015), phenomenological, sensory, social, and cultural elements that are experienced emotionally and affectively (Edensor & Sumartojo, 2015). Atmospheres are not passive backdrops but actively shape how people engage with spaces and interactions, often outside conscious awareness (Anderson, 2009). While supportive atmospheres, created through sensory aspects such as lighting, sound, touch and relational tone, can enhance comfort, dignity and engagement, unsupportive environments may increase anxiety or withdrawal (Sonntag, 2015). This underscores that creating communicative spaces (Abma, 2020) entails safe, benign atmospheres as indispensable aspects of research design for studies involving PLWD. Such spaces are rooted in connections that exceed verbal and cognitive understanding, are sentient and affective and enable researchers and co-researchers to respond to what unfolds in the ‘here and now.’
Our findings contribute to the current literature on photovoice with PLWD. ‘Backstage processes’ (Goffman, 1959) are sparsely described and typically center on methodological and technical challenges (Webb et al., 2020). We show that meaningful inclusion of PLWD requires a relational aesthetic rather than a methodological-technical approach (Groot et al., 2023). Relationality foregrounds interaction and connection through empathy, attentiveness, presence and the cocreation of meaning. An aesthetic lens reveals how interactions are shaped by sensory, affective, and embodied qualities such as tone of voice, rhythm, space, light, sound, textures and overall atmosphere (Thompson, 2022). Researchers must learn to be sensitive to multiple modes of communication, including embodied expression and cultivate an ethos that emphatically attunes them to co-researchers’ needs. Such attunement is not rooted in the rational, cognitive domain, but in the emotional, aesthetic domain.
Future photovoice studies with PLWD may benefit from moving beyond the notion of ‘autonomous voice’ and instead acknowledging voice as embedded within a distinct socio-cultural-spatial context and expressed through both verbal and embodied means. Interpreting such voices may be strengthened by the notion of ’thick voice’, which directs attention to how meaning and significance are rooted within relational ecologies (Carnevale, 2020). Researchers should be encouraged to acknowledge these entanglements and cultivate a sensitivity that enables them to ‘read’ or ‘feel’ what is being asserted between the lines. This requires moving beyond purely cognitive understandings toward relational, sentient engagement.
Conclusion
Creative participatory dementia research inevitably unfolds in complex, relational and unpredictable ways. This is not to be considered a flaw, but an inherent feature of socially just dementia research. It includes the acknowledgement of the messiness and embeddedness of voice and moving beyond purely rational, cognitive frameworks towards more holistic understandings of PLWD. We recommend that researchers attend more closely to the ethical and aesthetic dimensions of their work by examining how sensory, emotional, embodied, and affective practices shape the relationship between researchers and co-researchers and direct interpretive processes. People living with dementia may be exceptionally responsive to the atmospheric qualities of an environment, including its affective, sensory, and relational dimensions. While environments are experienced through immediate embodied engagement, atmospheres can become key mediators for comfort, anxiety or connection. In order for co-researchers with dementia to feel safe, researchers need to intentionally co-create sensory-affective atmospheres. Such atmospheres offer moments of awakening and allow encounters and connections in the sensory-affective here-and-now, beyond cognitively mediated and linguistic forms of understanding.
Footnotes
Acknowledgement
We would like to thank all co-researchers for their engagement and enthusiasm. We also thank the staff at the participating day centers for their support and collaboration.
Ethical Considerations
This study was approved by the Ethical Review Board of Erasmus University (ETH2425-408).
Consent to Participate
For participation, we obtained informed consent from the co-researchers’ informal carers or the co-researchers themselves, as applicable, and ensured anonymity and confidentiality.
Consent for Publication
In addition to gaining approval for the activities in this project, we also received approval from the co-researchers to publish all photos used in this publication. People who did not participate in the project but were photographed have been anonymized.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by ZonMw. [grant number: 10641012410002].
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
The datasets generated during and/or analyzed during the current study are not publicly available as they contain special category data, such as data regarding physical and mental health. Datasets are available from the corresponding author on reasonable requests.