The Qualitative Report 2013 Volume 18, Article 21, 1-21 http://www.nova.edu/ssss/QR/QR18/genoe21.pdf Picturing Leisure: Using Photovoice to Understand the Experience of Leisure and Dementia M. Rebecca Genoe University of Regina, Saskatchewan, Canada Sherry L. Dupuis University of Waterloo, Ontario, Canada Interviews and participant observation are commonly used to explore the experience of dementia, yet may not adequately capture perspectives of persons with dementia as communication changes. We used photovoice (i.e., using cameras in qualitative research) along with interviews and participant observation to explore meanings of leisure for persons with dementia. We discuss our photovoice process and the challenges we encountered, including ethical concerns, difficulty using the equipment, forgetting the context of photos, and questioning self. Despite challenges, photovoice aided in cuing memory, planning for the interview, sharing stories, and capturing meaning. We recommend further exploration of photovoice with this population. Keywords: Alzheimer’s Disease, Dementia, Leisure, Phenomenology, Photovoice In a growing body of research investigators are exploreing the experience of dementia from those living with the disease (e.g., Beard, 2004; Beard, Knauss, & Moyer, 2009; Clare, Rowlands, & Quin, 2008; de Witt, Ploeg, & Black, 2009; MacQuarrie, 2005, Phinney, 2006). In these studies, the researchers frequently collect data using qualitative interviews and participant observation (e.g., Beard, 2004; Hubbard, Downs, & Tester, 2003; Nygard, 2006; Phinney, 1998; Phinney, Chaudhury, & O’Connor, 2007). These methods have been particularly fruitful in exploring how persons living with dementia experience their symptoms and how they manage daily life with memory loss. However, as communication can change with dementia, finding alternative ways to research the lived experience of memory loss becomes increasingly important. This emergent body of knowledge focusing on the experiences of persons living with memory loss stems from Kitwood’s (1997a) personhood approach to dementia. Personhood was developed as a counterdiscourse to the biomedical approach, which focuses on neuropathology, thereby neglecting the perspectives of those living with memory loss. The personhood paradigm resulted in a change in the way we think about dementia, leading to research that includes persons with dementia, rather than only relying on proxy voices from formal and informal care providers. Kitwood’s reconceptualization of dementia was motivated by the desire to improve the lives of people living with dementia (Morton, 1999). Defined as “a standing or status bestowed upon one human being by others in the context of the relationship” (Kitwood, 1997a, p. 8), personhood acknowledges both individual values and possibilities for improving quality of life (Li & Orleans, 2002). According to Kitwood (1997a), personhood aims to include “…a richer range of evidence than the biomedical model…it provides a rationale for an approach to care that looks to more human than to medical solutions” (p. 2). Kitwood (1997a) argues that personhood should be linked to feelings, emotions, and the ability to live in relationships. Recognition of the essential unity of all human beings regardless of differences in mental capabilities is vital to personhood. Personhood can be 2 The Qualitative Report 2013 maintained for individuals with dementia by enabling choice, using remaining abilities, through expression of feelings, and by living in the context of relationships (Kitwood, 1997a). In developing personhood, Kitwood drew upon Buber’s (1937) “I-Thou” perspective (Kitwood, 1997a; Morton, 1999). Buber contrasts “I-It” relationships with “I-Thou” relationships. I-It relationships are characterized by detachment (Kitwood, 1997a). I-Thou relationships imply “going out towards the other; self-discovery, spontaneity…” (p. 10). I-It relationships are ordinary and trivial, but I-Thou relationships rise above that, to include not only anxiety and suffering, but also fulfillment and joy (Kitwood, 1997a). Kitwood’s approach to dementia calls for a move away from relating to persons living with dementia in the I-It mode to relating to them in the I-Thou mode, where the person is met with openness, tenderness, presence, and awareness. It is Kitwood’s (1997b) belief that I-Thou relationships replenish personhood, which involves lowering our defences and allowing our true feelings to show. As a result of the I-Thou-inspired personhood movement, we are beginning to understand the meaning of daily activities and occupations, including leisure. Literature suggests that leisure participation may be relevant to the experience of dementia (Beard et al., 2009; MacRae, 2010; Phinney et al., 2007) and important for maintaining identity and nurturing personhood for those living with dementia (Genoe, Dupuis, Keller, Schindel Martin, Cassolato, & Edwards, 2010; Genoe, 2009; Genoe & Dupuis, 2011; Murray Alzheimer Research and Education Program (MAREP), 2011). In particular, it is evident that engagement in therapeutic recreation programs in long-term care homes and day programs can have many benefits for persons in later stages of memory loss, including reductions in behaviours such as wandering or yelling, and an increase in alertness and socialization during participation in planned or prescribed therapeutic recreation programs (Buettner & Fitzsimmons, 2002; Buettner, Fitzsimmons, & Serdar, 2006; Buettner & Kolanowski, 2003; Fitzsimmons & Buettner, 2002; Kolanowski, Buettner, Costa, & Litaker, 2001; Kolanowski, Litaker, & Buettner, 2005; Sullivan, Pedlar, & Miller, 2002). Despite evidence of many benefits of these programs, little is known about how persons living with memory loss experience leisure and what meanings they attach to it. Nevertheless, recent research indicates that persons living with memory loss value meaningful leisure for a variety of reasons, including expressing oneself, finding balance, having fun, contributing in meaningful ways, freedom from stress, connection to loved ones, and opportunities for growth and development (MAREP, 2011). Participation in meaningful activity is valued among persons living with early stage memory loss (Beard et al., 2009; Phinney et al., 2007). Indeed, for some, engagement in meaningful activity is “the central driving force in their lives” (Phinney et al., 2007, p. 387). Although the personhood approach to dementia privileges the voices of persons living with the disease, Nygard (2006) notes that interviews may not be adequate for understanding the experience of memory loss as communication changes over time. Furthermore, Stewart and Floyd (2004) call for greater use of visual methods in leisure research, arguing that “visual leisure is meant to enhance our ability to conceptualize people’s leisure and to improve communication with the way we represent people’s leisure” (pp. 448-449). Adopting personhood as our approach to dementia, we used photovoice to capture meanings of leisure among persons living with memory loss who may have difficulty communicating in traditional ways. We gave participants disposable cameras, and asked them to take photos of objects and subjects that were meaningful for their leisure. It was our hope that visual depictions of leisure would provide participants with a way to communicate meanings of leisure without having to rely solely on words and in ways that may not be captured in words alone. In this article, we discuss how participants used photovoice to capture the lived Rebecca Genoe and Sherry Dupuis 3 experience of leisure and the challenges and advantages of using this method, along with recommendations for future research. Photovoice While visual research methods (e.g. photo elicitation) have been used to explore leisure in a variety of contexts (Hallman & Benbow, 2007; Johnson & Glover, 2011; Klitzing, 2004; Reynolds, Lim, & Prior, 2008), to our knowledge, photovoice has not been used to consider leisure within the context of dementia. Photovoice has a great deal of potential for exploring leisure within the context of dementia because it “...expands the forms of representation and the diversity of voices that help define, and improve our social, political, and health realities” (Wang, Cash, & Powers, 2000, p. 911). Photovoice provides a way to not only hear, but to see the participants’ stories of leisure. Photovoice is a participatory action research method in which participants are provided with cameras and given the opportunity to use photography to express, reflect, and communicate their everyday lives (Wang, 1999). It enables those most marginalized in our communities with a means to share their experiences and perspectives and enables researchers to see the world through the lenses of research participants. It “can affirm the ingenuity and perspective of society’s most vulnerable populations” (Wang & Burris, 1997, p. 372). As a result of the focus on the use of images to better understand the lives and communities of marginalized individuals, photovoice has been used to explore a diversity of health issues and populations (Catalani & Minkler, 2010; Hergenrather, Rhodes, Cowan, Bardhoshi, & Pula, 2009), such as women in rural China (Wang, 1999), traditional birth attendants in rural Guatemala (Cooper & Yarbrough, 2010), persons experiencing chronic pain (Baker & Wang, 2006), youth (Wang, Morrel-Samuel, Hutchison, Bell, & Pestronk. 2004), Tlicho mothers (Moffitt & Vollman, 2004), people who had experienced a spinal cord injury (Newman, 2010), people experiencing aphasia (Levin et al., 2007), and African American men (Ornelas, Amell, Tran, Royster, & Eng, 2009). We were only able to find one study that used photovoice as a means of capturing the experience of dementia for those living with it (see Wiersma, 2011). Photovoice enables individuals to act as recorders of their lives and as agents of change (Wang & Burris, 1997). Participants can use the power of the visual image to communicate their life experiences (Wang et al., 2000). Through photovoice, researchers are afforded the opportunity to see the world from the view of others, and research participants have the chance to describe what their photos mean and reflect (Wang & Burris, 1997). Photos can enrich interviews with their capacity to generate multiple meanings and to trigger discussion (Clark-Ibáñez, 2004). Hagedorn (1994) summarizes the advantages of using photography in research: Photographs invite open expression while maintaining concrete and explicit reference points. The images captured in photography invite people to take the lead in inquiry, facilitating their discussion of an experience. Photographic interviews elicit a unique return of insights that might otherwise be impossible to obtain with other techniques. Photographs sharpen memory and give the interview an immediate character of realistic construction and function. (p. 47) Many benefits of the photovoice method have been documented. The use of photos in research has been shown to provide reflective opportunities for participants (Loeffler, 2004; Samuels, 2004). In particular, photovoice can provide persons living with dementia with an alternative way to consider their everyday lives and the role of leisure within daily life by 4 The Qualitative Report 2013 using a visual memory aid to reflect on their experiences and situations. Photos can also help build rapport between researchers and participants (Loeffler, 2004) by providing participants with something to focus on, thus easing anxiety (Clark-Ibáñez, 2004; Harper, 2002) and encouraging communication (Hagedorn, 1994; Loeffler, 2004). Photos can capture greater levels of detail about the emotional meaning of experience than words-only data collection (Loeffler, 2004). The use of photographs can be a means for expressing emotions (Radley & Taylor, 2003) and unidentified needs (Levin et al., 2007). Photovoice researchers have demonstrated some of the motivations and advantages of using this method for research participants. Photovoice participants with chronic pain became involved in the research to help others better cope with pain, and to learn more about the physical and emotional experience of pain (Baker & Wang, 2006). When used with persons experiencing aphasia after a stroke, photovoice led to a new means of self-expression. Photos were shown to family and friends to express concerns and hopes about the present and future (Levin et al., 2007). Needs were identified and participants experienced empowerment as they expressed their concerns through photos, leading to feelings of control that had been lost in the medical model of treatment (Levin et al., 2007). Furthermore, the participants’ photos were posted on a website, showing how persons living with aphasia can lead full lives. In this way participants were able to use their photos to challenge dominant perceptions and the stigma associated with illness. Photovoice empowers research participants as they have control in deciding what to depict about their lives (Levin et al., 2007; Newman, 2010; Stewart & Floyd, 2004). This technique can increase feelings of competence as strengths and capabilities are discovered (Foster-Fishman, Nowell, Deacon, Nievar, & McCann, 2005). Photovoice gives participants freedom to express issues of importance to them and can stimulate discussion (Cooper & Yarbrough, 2010). Persons living with dementia might experience feelings of empowerment when using visual aids to tell their stories, especially if their abilities to communicate verbally have changed. The use of cameras to reveal experience might uncover hidden strengths and abilities and ensure that persons living with dementia are recognized as the experts of their own experiences. Adopting a critical reflection approach to photovoice in the context of leisure and dementia focuses on both positive and negative issues within the lives of persons living with dementia. Such an approach could portray the experience of dementia more holistically, moving away from the predominantly negative discourse surrounding dementia (Jolley & Benbow, 2000; Wiersma, 2011) and promoting positive identities for those living with the disease. Purpose The purpose of the original phenomenological study was to explore the meaning and experience of leisure within the context of early stage dementia using multiple methods, including the long interview (McCracken, 1988), participant observation, and photovoice. Since little is known about the meaning and experience of meaningful leisure within the context of dementia, we set out to understand how persons living with dementia experience the disease, how they experience leisure, what meanings they attach to leisure, and the role of leisure in maintaining identity. The findings addressing these questions have been published elsewhere (Genoe & Dupuis, 2011; Genoe & Dupuis, 2012). In this paper we focus on the experience of both the researchers and the participants in using photovoice in the dementia context, re-analyzing our data to understand the challenges and possibilities of using photovoice to understand the lived experience of dementia and leisure within that context. Rebecca Genoe and Sherry Dupuis 5 Participants Study participants included two men and two women living with early stage dementia in the community. They were recruited through early stage support groups and a dementia research program in Southwestern Ontario, Canada. Staff at the support groups and research program identified potential participants with early stage memory loss and provided them with information regarding the study, and four people who were interested in participating contacted the first author to be part of the study, or gave their contact information to the support group coordinator for us to contact them. No one who contacted the first author or gave their contact information to the coordinator, was excluded from the study, and all participants remained in the study until all data were collected. Participants included Charles, Rita, Jack and Alice (pseudonyms have been provided to protect confidentiality). Charles was a 77 year old man who had been diagnosed with Alzheimer’s disease about four years prior to our first meeting. Charles lived with his wife in an apartment complex for seniors. He was actively involved in choir and enjoyed playing games and watching movies, and reading fiction. Charles was living with Parkinson’s disease and macular degeneration. Rita was an 82 year old woman living in a condominium with her husband. She had been diagnosed with Alzheimer’s disease one year prior to our first interview. She enjoyed spending time with her grandchildren, doing crossword puzzles, writing poetry, watching television, and playing cards. Alice was a 59 year old retired nurse who had been diagnosed four years prior to our first interview. Alice was originally diagnosed with vascular dementia, but this was later changed to both vascular dementia and Alzheimer’s disease. Alice lived on her own in an apartment, and advocated for persons with dementia, as well as enjoyed writing poetry, playing computer and card games, spending time with family and friends, doing crafts, reading fiction, caring for her cat, and feeding birds. Jack was a 72 year old man who had been diagnosed with Alzheimer’s disease two years prior to our first meeting. Jack lived with his wife in a small bungalow in a seniors’ community. He enjoyed physical activity, and was an avid golfer. He played crokinole, darts, and carpet bowling. He and his wife enjoyed social dancing as well. Methods After obtaining ethical approval from the University Research Ethics Board, we followed Richardson and St. Pierre’s (2005) notion of crystallization, and used three methods of data collection to understand the lived experience of leisure within the context of dementia from a variety of angles and sources. First, we conducted long interviews with the participants. The long interview is a series of interviews that aim to understand lived experience (McCracken, 1988). We interviewed each participant on four different occasions over a six month period. Second, using participant observation, we joined the participants in some of their favourite leisure activities, including physical activity, crafts, and games. Finally, using photovoice, we provided the participants with cameras and asked them to take photos of objects, subjects and spaces that were meaningful for their leisure. In this article, we will focus only on the photovoice data. Photovoice Process We gave participants 27-exposure disposable cameras with a built in flash at the end of the first interview and asked them to take photos of meaningful objects and experiences 6 The Qualitative Report 2013 relating to their leisure. Using disposable cameras can be challenging for older adults as manual dexterity is required to operate the camera (Kelly, Wakewich, Simmons, & Leipert, 2007). Therefore, we gave participants the option to use their own cameras if they preferred, however, all four participants chose to use the disposable cameras. We gave participants both written and verbal instructions regarding the operation of the camera. We had hoped that participants would take photos independently, yet three of them asked family members to take the photos so that they could be included in the photos engaging in leisure. As well, two participants asked us to take photos of them before the cameras were collected for processing. This could have influenced what the participants chose to photograph, however, Radley and Taylor (2003) found that assisting with photography increased knowledge about the context in which the photos were taken and awareness of the decision making process participants underwent when deciding what to photograph. The persons with memory loss decided which photos they wanted to take and set up the shots. Participants took between eight and 27 photos. At our second meeting with participants (typically a participant observation session), we collected the cameras and developed the photos. We gave participants one set of photos and one compact disc with their photos on it and retained one set of photos and one compact disc for data analysis. As using photos alone contradicts the essence of photovoice, we asked participants to discuss (give voice) to their individual experience – participants narrated the meaning of the photos (Wang & Burris, 1997). Although photovoice researchers typically use group discussion to explore the photographs, Baker and Wang (2006) modified the method to work with individuals. In one-on-one interviews, we asked participants to tell us about their photos. This format negated the need for multiple group meetings to learn how to use the cameras or participate in public forums (see also Newman, 2010). In these interviews, we discussed the participants’ photos to contextualize issues around leisure, including what was seen in the picture, what was really happening in the photo, and how the photo related to leisure and everyday life (Wang & Burris, 1997). Examples of questions asked of participants included: What do you see in this photo? Can you describe what is in the photo? What is meaningful to you about this photo? What does this photo say about your leisure? What does this photo say about your life now? What does this photo say about how you are? Data were digitally recorded and transcribed verbatim. Data Analysis In analyzing the data in order to uncover the challenges and possibilities of using photovoice in the dementia context, we used similar coding methods as was used in the original study, however we focused primarily on the photos, the narratives from the second interviews with participants, field notes and a reflexive journal that was maintained by the first author throughout the process. Field notes were recorded immediately following the interviews and participant observation sessions and included information such as the location of the interviews, whether others were present, mood and characteristics of the participant and first author, and what went well and what could be changed for next time. Suggestions for follow-up questions were also recorded (DeWalt & DeWalt, 2002; Patton, 2002). The reflexive journal was maintained throughout data collection and analysis, and included initial notes regarding analysis as connections between the data and the participants emerged (e.g. similarities and differences among the participants), as well as questions raised throughout data collection and analysis, and the first author’s personal experiences with the research questions, interactions with participants, and epistemological and ontological positions (Bochner, 2000; Dupuis, 1999; Schwandt, 2007). Rebecca Genoe and Sherry Dupuis 7 In our original analysis, we identified themes and subthemes related to the experience of dementia and the role of leisure within the context of dementia. However, in our re- analysis of the photovoice data, we looked specifically for themes regarding challenges and possibilities of using photovoice as a methodology. In the re-analysis, we used NVivo 8, and followed van Manen’s (1997) detailed line by line coding. First, we read all data multiple times to get a sense of the experience of photovoice for the participants and for us as researchers. Second, we read each sentence carefully while considering what it revealed about the phenomena. Then, we identified themes along with appropriate phrases or statements that described the meaning of the themes. We compared themes in each transcript and field note for commonalities and differences and together we identified the themes that best described the participants’ and our experiences of using photovoice with the participants. We reflected on themes that were not included and those that were not deemed essential to the experience of photovoice within the context of memory loss were removed. We discussed emerging themes and how they were interrelated and could be clustered together into broader expressions of the experience until we felt confident that the themes and their relationships adequately captured the both the challenges and possibilities of using photovoice within the dementia context. After the original analysis, we discussed and verified the findings with all participants to see if they agreed with our interpretations (Halldόrsdόttir & Hamrin, 1997; Parsons, 1997; van Manen, 1997) and all participants agreed that our findings reflected their experiences. However, we were not able to return to the participants after this re-analysis of the data. Results Our original analysis revealed that participants experienced leisure within a complex paradox of challenge and hope characterized by struggling with change while tackling life with dementia. They experienced threats to identities but were able to use leisure to buffer these threats and uphold identities (see Genoe & Dupuis, 2011, and Genoe & Dupuis, 2012 for more details on these findings). Photovoice provided unique insight into the participants’ experiences of leisure. This distinctive way of communicating led to greater understanding of meanings of leisure in the context of dementia. Visual images provided persons living with dementia with a starting point for discussing the meaning of leisure and whether or not leisure has a role in sustaining identity and resisting the negative discourse surrounding dementia. Photos captured a variety of meanings of leisure within the context of dementia for the participants. The photos, along with their narratives, revealed how leisure was experienced as paradoxical. As abilities changed because of memory loss, so too did the participants’ ability to participate in leisure to the same extent that they had prior to diagnosis. Nevertheless, leisure was valued by the participants because they used it to cope with the changes they were experiencing, maintain their relationships with family and friends, sustain remaining abilities and slow progression of dementia, and to create positive memories of themselves for their loved ones. Challenges of Photovoice Challenges arose in using photovoice with persons living with memory loss. These included photographing ethically, struggling with equipment, forgetting the context of photos, and questioning self and abilities. Photographing ethically. Photovoice presents a unique set of ethical concerns that are not found in words-only interviews. Attention must be paid to issues of consent, 8 The Qualitative Report 2013 ownership of photos, and intrusion (Wang & Redwood-Jones, 2001). Informed consent is pertinent in photovoice. In addition to providing informed consent to participate in the study, consent was required from human subjects in the photos. We asked participants to obtain consent from any person they wished to photograph, and to have them indicate their willingness to have their image appear in the study and in any resulting publications. We also obtained consent from participants to use their photos in the project and subsequent publications. Participants own the negatives of photos that they took, and must give permission, and be given credit, in publications. Photovoice participants should avoid intrusion on individuals, groups, neighbourhoods, and communities. As well, the participants needed to be careful not to place the subjects of their photographs in false light. The rights of the subject might be compromised if the interpretation of the events conflicts with his or her thoughts or feelings (Wang & Redwood-Jones, 2001). Although most of these ethical guidelines did not pose challenges for this study, obtaining informed consent from human subjects of the photos did. Participants received copies of an information letter and consent form explaining the study to individuals or guardians of persons they wished to photograph. Some of the participants had difficulty understanding that consent was required from any person who appeared in a photo taken for the purpose of this study. In most cases, a family member ensured that consent was obtained, but one participant did not ask for consent, and we were unable to use her photos with other people in them: “She seemed to have more difficulty with the consent forms than the others, and they hadn’t been signed” (reflexive journal). Unfortunately, many of these photos vividly highlighted valued leisure time spent with her family, particularly grandchildren. While we were able to use her photos as a jumping-off point to discuss leisure with her family, we were unable to use the photos publically. Struggling with equipment. Participants faced challenges in using the cameras themselves. Disposable cameras are small, with instructions written in small print. Although relatively simple to use, they do require a few steps to take the photo (e.g., holding the flash button until the light turns red, indicating the flash is ready, taking the photo, winding the film manually). Charles, who was also diagnosed with Parkinson’s disease and macular degeneration, was unable to use the camera and asked his wife to take the photos: “Um…I didn’t take any pictures myself, because two reasons…one is being able to see clearly.” The cameras had limited range (i.e., the photographer must stand 3 meters away from the subject), no zoom feature, and the flash was not automatic, occasionally making it difficult to capture what the participant wanted to portray in the photo. In figure 1, Alice was taking a photo of the birds on her neighbour’s balcony, because feeding the birds had become a valued leisure activity since being diagnosed with dementia. However, the limited range of the camera did not allow her to zoom in on the birds, making the birds very difficult to find in the photo. When looking at the photo, Alice said: “Now this one didn’t really catch everything, but it was, as you can see I feed the birds. And there’s the two doves” (pointing to the doves on the edge of the photo). Forgetting the context of photos. Closely related to struggling with equipment, forgetting posed another challenge. Sometimes, participants could not remember what a photo represented to them or why they had taken it and were unable to discuss the meaning of the photo with us. For example, Rita was surprised to discover a photo of herself vacuuming, a chore that she disliked, among her leisure activities. When asked if she was vacuuming in the photo, she replied: Yes I was. How about that. That doesn’t happen very often either (laughs). I have a cleaning lady that comes in, yeah, yeah, that’s what I’m doing. I don’t Rebecca Genoe and Sherry Dupuis 9 know what that is, well I guess it’s in here somewhere. Yeah. I didn’t remember that picture being taken. Figure 1: Alice takes a photo of the birds on her balcony The lack of detail in the photographs contributed to forgetting because participants were occasionally unable to recall exactly what it was they had intended to portray with a particular shot: it was uh, I’m wondering if it was uh… gosh what’s that… restaurant, I can’t think of it now. It’s downtown here… uh, no it doesn’t look like that either, I have no idea where this is. I’ll have to ask my daughter sometime. (Rita) Charles did not recognize what he was doing in many photos, and took some time to recall what he wanted to say about each photo, sometimes trying to guess what he was doing in the photo: “Hmm…(studies the photo) I’m back in my corner. But I can’t remember whether I was reading.” Additionally, participants occasionally forgot to photograph their favorite leisure activities. During our discussions with Rita, we came to understand how much she loved to write poetry on her computer. However, when we began exploring her photos with her, this activity was not illustrated in any of her photos. Rita had not thought to take a photo that would reflect the importance of this activity for her. When asked if she had taken a photo of the computer, Rita replied: “Yeah, yeah…never thought about that. Yeah.” Following the interview, the first author wrote in her reflexive journal: “Unfortunately we didn’t get to talk much about her poetry, which is her favourite hobby, because she hadn’t taken a photo of her computer, but we did talk about it at the end.” When asked further about her poetry, Rita replied: 10 The Qualitative Report 2013 I love poetry. I love reading other people’s poetry, and um, and I like writing it. Ah, I feel really good when I’m typing it out and, and uh, and it may not be all good, it’s you know, but, to me it’s good, because it’s done, done something for me, and my kids like it, and you know, that’s I’ve given it to friends, and stuff like that. Questioning self and abilities. Participants felt unsure of their photos and whether or not they were taking pictures of the “right” thing, or taking photos of what we wanted to see: “I probably didn’t do what you wanted for some of them” (Rita). Indeed, Charles questioned whether he should be part of the study at all since he experienced multiple illnesses that affected his ability to use the camera. Family members who took the photos were also unsure if they were taking photos of the “right” thing, or whether or not the photos would turn out. Occasionally, multiple shots of one scene were photographed because the photographer tried to get the best shot. Reassuring the participants that there was no right or wrong and that the photos did not have to be works of art helped ease their uncertainty of their ability to participate in the study. Despite concern about whether the photos were ‘good enough’, participants enjoyed seeing their photos and discussing them. Possibilities of Photovoice There were many possibilities associated with using photovoice that far outweighed the challenges. Photovoice was useful for planning ahead and cuing memory, sharing stories through photos, and capturing multilayered meaning. Figure 2: Charles is pole walking Planning ahead and cuing memory. Memory loss can impact the ability to participate in interviews because persons with dementia might have difficulty remembering answers to questions, which can cause feelings of embarrassment (Hubbard et al., 2003; Nygard, 2006). Photovoice might help to ease this difficulty because the brain responds differently to both verbal and visual information. Accordingly, photovoice might be useful for