The role of leisure within the dementia context.

Article

The role of leisure within the dementia context M Rebecca Genoe

Dementia 2014, Vol 13(1) 33–58 ! The Author(s) 2012 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301212447028 dem.sagepub.com

University of Regina, Canada

Sherry L Dupuis University of Waterloo, Canada

Abstract While our understanding of the subjective experience of dementia is growing, leisure’s role within that experience is less clear. This study, guided by hermeneutic phenomenology, aimed to understand the meaning and experience of leisure for persons living with early stage memory loss. Four participants with early stage dementia participated in interviews, participant observation, and photovoice, in which participants are given cameras and asked to take photos of their day to day lives (Wang, 1999). Data revealed that participants experienced daily life with dementia, including leisure, within a paradox of challenge and hope. They struggled with the changes they experienced as a result of dementia, such as muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, they found ways to tackle life with dementia, by reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity to live their lives with hope. Keywords Alzheimer’s disease, dementia, leisure, phenomenology, photovoice

Current research exploring the subjective experience of dementia provides insight into life with dementia (e.g. de Witt, Ploeg, & Black, 2009; Harris, 2002; Keller et al., 2010; Phinney, 2006). This growing body of research highlights the complexity of living with dementia (e.g. Keady, Williams, & Hughes Roberts, 2007; Pearce, Clare, & Pistrang, 2002; Steeman, Godderis, Grypdonck, de Bal, & de Casterle`, 2007) and demonstrates how persons diagnosed with an illness causing dementia adapt to the changes in their lives (e.g. Harman & Clare, 2006; Harris & Durkin, 2002). While research illuminates the value of meaningful activity for persons living with memory loss (e.g. Beard, Knauss, & Moyer, 2009; Phinney, Chaudhury, & O’Connor, 2007), the role of leisure in the lives of persons with Corresponding author: M Rebecca Genoe, Faculty of Kinesiology and Health Studies, University of Regina, Regina, SK, Canada, S4S 0A2. Email: [email protected]

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dementia from their perspectives is presently less clear. As such, in this hermeneutical phenomenology we set out to explore the meaning and experience of leisure for persons living with early stage memory loss. This article addresses how persons living with dementia use leisure to balance the changes in their lives with a sense of hope.

Literature review Bamford and Bruce (2000) examined the desired outcomes of community care from the perspectives of persons with dementia and their partners in care. An important aspect of quality of life for the participants in the study was their continued need ‘to access normal activities and patterns of life in ways that maximize choice and control’ (p. 553). The participants emphasized that valued activities do ‘not simply centre on personal care and domestic tasks but include opportunities to socialise, to engage in activities and to achieve a sense of social integration’ (p. 553). The importance of continued companionship, social integration, and meaningful activity to quality of life and well-being for persons with dementia has been documented in other research (see, for example, Chung, 2004; Mitchell, Jonas-Simpson, & Dupuis, 2006; Murphy, Glover, & Davis, 1996; Raynes, 1999). In fact, continuity of valued activities and lifestyles might assume even greater significance after the diagnosis of an illness causing dementia (Menne, Kinney, & Morhardt, 2002). Although very little research has specifically examined the role of meaningful activity, including leisure, in the dementia context, recent research has begun to shed light on this, especially from the perspective of those living with memory loss. People with dementia define activity as meaningful when it provides opportunities for them to live up to valued concerns and commitments (Phinney, 2006). ‘Through doing, people with mild to moderate dementia find their lives to be meaningful’ (Phinney, p. 390, original emphasis). In fact, persons with dementia often find meaning in activities previously considered ordinary (Snyder, 2001). People with early stage dementia participate in a variety of meaningful activities, including leisure, because these activities are perceived to be enjoyable and pleasurable (Phinney, 2006). They seek mentally stimulating activities to guard against further impairment. They also prefer to maintain patterns of daily life and wish to continue to contribute to society (Ohman & Nygard, 2005). Doing so contributes to feelings of a meaningful, ‘normal’ life (Phinney, 1998). In a recent study examining what leisure means to persons living with memory loss in both community and long-term care home settings, Dupuis, Whyte, Carson, Sadler, and Meschino (2010) found that persons with memory loss look for a range of experiences in their leisure that allow them to continue to ‘live’ and even celebrate life despite dementia. More specifically, they look for opportunities in their leisure to: have fun, make a difference, seek freedom, be with, be me, find balance, and grow and develop. Participation in daily occupations, including meaningful activity, is beneficial to persons with dementia when they emphasize autonomy, independence, and continued abilities (Ohman & Nygard, 2005), although support from others may be required to maintain involvement in meaningful activity to compensate for losses (Phinney, 2006). Persons living with dementia are able to experience independence when their care partners balance control as abilities change by reducing the demands of the activity (Genoe et al., 2010). Reminders, instructions, and accompanying the person with dementia can serve to ensure success in the activity (Genoe et al., 2010; Phinney, 2006). With support, persons with


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dementia can continue to engage in meaningful activities. For example, preparing meals together may lead to feelings of connection to others, even when the person living with dementia makes only a small contribution (Keller et al., 2010). Indeed, activities shared between care partners and persons with dementia lead to high levels of happiness (Voelkl, 1998), and staying active may distract from feelings of social isolation (Van Dijkhuizen, Clare, & Pearce, 2006). Most of what we know about leisure and dementia comes from therapeutic recreation (TR) research conducted in long-term care facilities and day away settings. Situated within an interventionist paradigm, the focus of much of this research is on the impact of planned recreation activities on ‘problem’ behaviours and functioning among persons in the later stages of dementia. Although there has been critique of leisure as therapy (e.g. Dupuis et al., 2010; Sylvester, 1985), research also highlights the benefits of prescribed TR activities that meet the interest and skill level of persons with dementia. TR activities are associated with increased positive effect, ability for self-care, and level of engagement on a task (Buettner, Fitzsimmons, & Serdar, 2006), as well as decreased passivity, agitation, negative behaviours such as yelling or banging, aggression, and the need for medication (Buettner & Kolanowski, 2003; Fitzsimmons & Buettner, 2002; Kolanowski, Buettner, Costa, & Litaker 2001; Kolanowski, Litaker, & Buettner, 2005). Participating in therapeutic and general recreation programs in long-term care is also connected to feelings of enjoyment, feeling good about being a contributing member of a group, opportunities for socialization, and involvement in meaningful activity, which can in turn lead to transformation of character (e.g. a quiet resident becoming more social when participating in a particularly meaningful activity) (Sullivan, Pedlar, & Miller, 2002). Furthermore, long-term care residents with dementia express happiness more frequently during planned recreation programs than at other times of day. They are also more likely to have their eyes open during recreation interventions, indicating that TR stimulates positive effects, thus improving quality of life for persons with dementia in long-term care (Schreiner, Yamamoto, & Shiotani, 2005). Clearly TR programs, which are based on the notion that leisure can contribute significantly to quality of life, are of value to persons with later stage dementia. Nonetheless, our understanding of the meanings attached to leisure in general, remains limited. This study aimed to fill this gap and expand our understanding by exploring how persons with dementia think about and describe leisure in the context of their lives. More specifically, we sought to address the following research questions: What is the meaning of leisure for persons living with early stage dementia? How do persons living with early stage dementia experience dementia? How does leisure change with dementia? How does dementia influence the leisure experience? What role does leisure play in the daily lives of those living with memory loss? For the purpose of this study, we conceptualized leisure as broadly as possible in order to avoid limiting the participants’ definitions of leisure. As such, we drew upon Kelly’s (1996) conceptualization of leisure as free time, activity, or state of mind characterized by intrinsic satisfaction and perceived freedom.

Methods This study was guided by hermeneutic phenomenology as described by van Manen (1997), which is particularly useful for exploring the subjective experience of dementia (Bond & Corner, 2001; Lyman, 1998). Phenomenology provides ‘. . . a voice for the lived experience of


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individuals, as well as alternative cultural interpretations, [and] supports people as they struggle to maintain their own personhood’ (Lyman, 1998, p. 52).

Participants Four persons living with early stage dementia in the community were recruited to participate in this study in order to understand the role and meaning of leisure in their lives. Participants were accessed through early stage support groups and a dementia research program in South-western Ontario. The first author contacted agencies by telephone and arranged for in-person meetings with agency staff at that time to further explain the research and ask them for assistance with recruiting participants. A letter introducing the first author and a fact sheet were provided to potential participants by agency staff members, either in person or by email. The fact sheet described all aspects of the study, including interviews, participant observation (which was described as ‘participating in your favorite leisure activities together’) and photovoice. Four people expressed an interest in this study, either by responding to the email, or by giving their contact information to the early stage support group facilitator. The first author then telephoned potential participants to determine if they wished to participate in the study. All four were still interested in participating after the first author described the study and gave them the opportunity to ask questions. An initial interview was then booked with each of the four participants. In order to participate, persons living with dementia were required to be able to provide informed consent and be able to use a camera somewhat independently (i.e. with minimal assistance in person, with written instruction, or completely independently). They also had to agree to participate in all aspects of data collection, including interviews, participant observation, and photovoice. Nygard (2006) calls for research that follows a small number of participants over a longer period of time. By focussing on a smaller number of participants and capturing their experiences over several months, we were able to build strong rapport and explore the lived experiences of our participants in much greater depth. Enormous amounts of data were collected with each of the four participants, allowing for rich, thick description that may not have been possible with more participants (see Morse, 2000). Morse notes that in phenomenology, when each person is interviewed multiple times and a large amount of data is collected for each participant, fewer participants are required. While we acknowledge that the findings do not reflect the experiences of all persons living with dementia, we believe they provide deep insight into the complexity of what it is like to live with dementia from day to day and the meaning and experience of leisure within that context. Participants included Jack, Alice, Charles, and Rita.1 Jack, (70 years old) was diagnosed with Alzheimer’s disease two years prior to his first interview. He was working as a consultant when diagnosed and had to give up his contracts upon receiving the diagnosis. He lived with his wife in a small bungalow in a retirement community. Half way through data collection, Jack and his wife moved to a similar retirement community to be closer to their adult children in order to have more support. Jack attended a day program once per week and golfed on a regular basis in summer. Both Jack and his wife were involved in physical activity, including fitness classes offered through their retirement community and on their own. Jack was also involved in many of the recreation activities offered at both retirement communities, including crokinole and carpet bowling. Alice was diagnosed with vascular dementia eight years prior to her first interview. Alice lived with her cat in her own apartment and had frequent contact with her niece, who was


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her primary partner in care, as well as her two sons and many friends. Alice was working as a nurse at the time she was diagnosed and was forced to give up her job. At the time, Alice was actively involved in advocating for herself and others with dementia by giving talks at public events, planning conferences for persons with dementia and their care partners, and creating resources designed for persons living with dementia. Alice spent her leisure time engaging in mentally stimulating activities such as computer games, writing poetry, reading, and crafts. Alice also started many new activities since her diagnosis. She learned how to use a computer, and took great pleasure in feeding the birds outside her apartment as a way to connect with nature. Charles was a 77 year old man who had been diagnosed with Alzheimer’s disease four years prior to his first interview. Charles held many jobs throughout his working years. He was a church minister, owned a small business, and worked for an insurance company before retiring. After retirement, Charles and his wife travelled a great deal, stocking religious books in supermarkets. Charles lived with his wife in a small apartment in a continuing care facility that included independent apartments, a retirement home, and a long-term care facility. Charles and his wife were actively involved in many social activities. They spent a great deal of time eating out with friends, going to bible study, singing in a choir, and pole walking. Charles was an avid reader, and, despite his macular degeneration, spent many hours each day reading fiction. Rita was an 82 year old woman who was diagnosed with Alzheimer’s disease one year prior to her first interview. Rita worked in the family business before retiring. Rita had many grandchildren and enjoyed spending time with her family. Rita had dropped many of her favorite leisure activities, such as church choir, and at the time of the study spent much of her time watching television, reading, and writing poetry. Rita also liked to go to the mall, but was unable to do so as frequently as she would have liked since her driver’s licence had recently been taken away. Rita loved to socialize, and played cards with a friend once per week.

Data collection Drawing on Richardson and St. Pierre’s (2005) notion of crystallization, data were collected in three ways. First, participants and the first author engaged in three individual interviews following the long interview format (McCracken, 1988). The long interview is a series of interviews that begin by building rapport, followed by grand tour questions that aim to understand lived experience. The long interview afforded multiple visits with the participants, which led to strong relationships and allowed for ‘bad days’ in which participants had difficulty sharing their experiences. The first interview focused on information-gathering and open-ended questions that sought to understand the participants’ experiences, particularly of dementia. The second interview focused on photos taken by participants as a means to understand the meaning and experience of leisure in their lives. The third interview explored how leisure helps the participants cope with change in their lives. Digitally recorded interviews ranged from 45 to 90 minutes in length. In keeping with phenomenology (van Manen, 1997), the participants were interviewed a fourth time to confirm our interpretations of the data. All participants agreed that the interpretations shared with them accurately reflected their experiences with leisure in the context of dementia.


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Data were also collected through participant observation. On one or two occasions, the participants and the first author engaged together in leisure activities of the participants’ choice. These sessions ranged from one to two and a half hours and included walking, putting, crafts, and games. Field notes were recorded immediately following participant observation sessions guided by sensitizing concepts that served to remind us what to observe, such as the physical context, the people involved, their actions, and verbal and nonverbal communication, including verbatim quotes (DeWalt & DeWalt, 2002). Finally, data were collected using photovoice (Wang, 1999; Wang & Burris, 1997). Photovoice is a participatory action research method in which participants are given cameras and asked to take photos of their everyday lives. Photovoice is particularly useful for exploring the subjective experience 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, Morrel-Samuels, Hutchinson, Bell, & Pestronk, 2004, p. 911). Although photovoice is typically a method in which participants meet in groups to discuss the resulting photographs and outline the strengths and weaknesses of their communities, Baker and Wang (2006) modified the method to work with individuals instead of groups. Given that our participants all lived in different communities, this study similarly involved one-on-one discussions between the first author and the photographer. We gave participants disposable cameras upon the conclusion of the first interview and asked them to take photos of meaningful objects and experiences relating to their leisure. Since other research using photovoice with older adults has pointed out the challenges of using disposable cameras (e.g. small print, manual dexterity required) (Kelly, Wakewich, Simmons, & Leipert, 2007), participants were given the option to use their own cameras if they preferred. However, all four participants chose to use the disposable cameras provided to them. Participants received both written and verbal instructions regarding the operation of the camera. While we had hoped that participants would take photos independently, three of them asked family members to take the photos so that they could be included in the photo engaging in leisure. In addition to this, two participants asked the first author to take photos of them before the cameras were collected to be developed. While this could have influenced what the participants chose to photograph, Radley and Taylor (2003) found that assisting with photography increased knowledge about the context in which the photos were taken and increased 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. Once participants finished taking photos, two sets of photos were developed. One set was returned to the participants and we kept one set to use in discussion with the participant and as part of the collected data. Additionally, photos were transferred onto two compact disks. One was given to the participant and the other was kept as data. Participants took between eight and 24 photos. Consent was obtained by the participants to use their photos and by anyone whose image appears in the photos. The second interview focused on discussion of the photos as a means 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 everyday life (Wang & Burris, 1997). We also asked questions about when and where the activity depicted in the photo took place, who engaged in the activity, and how time passed when engaged in the activity. Photovoice was a unique aspect of this study as, to our knowledge, it has not previously been conducted with persons with memory loss. The method was particularly useful as participants used the photos as memory cues to remind them of what they wanted to discuss in the second interview. One participant ‘acted out’ his leisure activities when


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looking at the photos. Photos represented not only their favorite leisure activities, but also how they had adapted their activities to prolong engagement. Using photovoice in combination with the other methods allowed us to follow up over time with leisure activities represented in photos. Furthermore, as we engaged in the participants’ leisure activities with them, we had the opportunity to observe how their leisure activities and adaptations represented in the photos played out in practice. Data, including transcripts, participant observation field notes, and researchers’ field notes were analyzed using van Manen’s (1997) phenomenological reflection, which aims to grasp the essential meaning of the phenomenon being explored. Data were read multiple times to get a sense of the lived experience as a whole (Halld0rsd0ttir & Hamrin, 1997; van Manen, 1997). Each sentence was carefully read while considering what it revealed about the phenomenon. Themes were then identified and noted in the margins of transcripts and field notes. Recurring themes were documented and appropriate phrases or statements were identified to describe the meaning of the themes. Next, themes in each interview and participant observation session were compared for commonalities and differences, and overall themes that best described participants’ lived experiences were identified (van Manen, 1997). Photos were analyzed along with Interview 2 transcripts, and as those transcripts were analyzed, photos were linked to representative quotes. In order to fit all the pieces together, we wrote individual composite portraits (Moustakas, 1994) that interpreted each participant’s experiences with leisure and memory loss. Composite portraits included themes and their descriptions, extensive quotes, and the participants’ photos. We then compared composite portraits to cluster themes into broader essences of the experience and eliminate themes and subthemes that were not essential to the participants’ experiences. The most representative quotes and photos were chosen from these documents to support the emerging themes. The authors met on a number of occasions to discuss the emerging themes and how they were interrelated and might cluster together into broader expressions of the experience, until we felt confident that the themes and their relationships accurately captured the experiences of the participants (Parsons, 1997).

Leisure within daily life: the paradox of challenge and hope Exploring leisure provided a fruitful way to understand the experience of daily life with dementia. Although we set out to explore leisure specifically, we soon learned that leisure could not always be separated from other aspects of daily life. Participants spoke about leisure largely in terms of the types of activities they chose to engage in while not participating in obligatory activities, such as self-care or housework. Yet they did not speak of leisure in isolation from other activities, particularly as obligatory activities were often affected in the same ways that leisure activities were. Talking about leisure prompted discussions of other aspects of life with memory loss, and participants did not always distinguish leisure from other parts of their daily lives. For example, Alice had difficulty distinguishing leisure from work, since her leisure activities were often work-like in nature as they were aimed at helping her cope with memory loss: Like I’m having a very difficult time differentiating between leisure and work. So to speak. And I think that’s due for the, to the fact of the way I sort of constructed it within my own mind. Because I’ve combined the two . . . So leisure, defining leisure is really difficult for me. Because


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Dementia 13(1) when you first asked me I thought what is leisure? Well, yeah the things I do for fun. Well everything I do is for fun, with a work connotation in it. (Interview 3)

Participants experienced daily life, including leisure, within a complex paradox of challenge and hope. This paradox was revealed through the juxtaposition of both negative and positive aspects of living with dementia. The participants were challenged by the changes they experienced as a result of dementia, yet they experienced a great deal of hope. While the changes affected their leisure participation, they felt that participation in leisure helped them to counteract changes by keeping their minds active and allowing them to continue to find meaning in life. The paradox of challenge and hope lies in the tension between struggling with change and tackling life with dementia. While participants encountered many challenges in their daily lives, they faced them with grace and dignity, experiencing growth and development in the process. Essences, themes, and subthemes are listed in Table 1.

Table 1. Essences, themes, and subthemes of the paradox of challenge and hope Essence

Theme

Subthemes

Struggling with change

Muddled thinking

Disconcerting forgetfulness Distracting concentration Losing access to thoughts Baffling environment Troublesome learning

Fluctuating abilities Draining energy

Tackling life with dementia

Frightening awareness Disquieting emotions Reconciling life as it is Battling through by being proactive

Living through relationships

Being optimistic

Prolonging engagement in meaningful activity

Diminished strength and capacity Fleeing motivation and interest

Stalling decline with activity Maintaining a sense of humor Avoiding stress and worry Being open (or not) Supporting each other Being together to secure a sense of belonging Trusting in others Being accepted Feeling hope for today and tomorrow Focusing on the positive Comparing self to others Normalizing experiences Seeking help to improve a situation Altering leisure


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Struggling with change Struggling with change referred to the obstacles that participants experienced since diagnosis, largely due to changes in cognition. Participants faced muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. Muddled thinking. Muddled thinking was characterized by alterations in thought processes that made cognition more challenging. Charles explained: ‘Thinking clearly is probably the biggest challenge’ (Interview 1). Muddled thinking was experienced in terms of disconcerting forgetfulness, distracting concentration, losing access to thoughts, baffling environment, and troublesome learning. Disconcerting forgetfulness reflected more difficulty than usual remembering recent, current, and future events. For example, participants might forget what they had planned for the day or particular aspects of their leisure, such as rules. Jack, who practiced ballroom dancing with his wife for many years, told us how dancing had become difficult because he could no longer remember the steps: ‘Some of it is losing the ability to remember what we should, like you learn a step for months and months and months and then all of a sudden I can’t remember . . . what I’m supposed to be doing’ (Interview 2). Forgetfulness could be both predictable and unpredictable; one participant always found it difficult to recall names, while another participant was surprised she could recall previously forgotten recipes. Distracting concentration reflected a loss of focus and shortened attention span. Participants occasionally lost focus on a conversation or when watching television and movies. Following a storyline and remembering the characters became increasingly challenging: But the other night we watched a movie. I watched it a couple times before but I could not get the sense of it. When it was all over I said [to my wife] . . . ‘I’m clueless as to what was it all about. Can you tell me the story?’ (Charles, Interview 1)

Muddled thinking was also characterized by losing access to thoughts. Often participants were unable to retrieve an idea or relay an idea to another person. For Alice, starting the housework was overwhelming because she could not figure out where to start. Accessing thoughts varied – sometimes participants had no trouble accessing thoughts, and other times it was more difficult. Rita mentioned how she was unsure about what was going on in her head at any particular time: . . . it’s sometimes really hard, and I wonder what goes on in your head really, because you sort of think sometimes you’re not very clear and other days you remember . . . you sort of wonder what’s going on in your thinking . . . because it was never like that before. (Interview 3)

Participants experienced baffling environments. Time disappeared and arriving on time for appointments and engagements was more difficult. New and familiar spaces were disorienting: ‘Because I’ll get up in the morning, and I’m very lost in the morning . . . I’m disorientated in my own apartment’ (Alice, Interview 2). Baffling environments affected leisure as well. For example, Jack felt disoriented when travelling. As his sense of time was altered, he was worried about missing the tour bus: . . . like we went on bus trips and it was a matter that I wanted to be back on the bus, and not wanting to miss it . . . And [my wife] would say ‘Well we’ve got another 25 minutes’ and I said ‘No, no’. (Jack, Interview 1)


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Finally, muddled thinking was characterized by troublesome learning, which limited participants’ ability to learn new things. They were in many cases restricted to leisure activities that they had learned prior to dementia: ‘I can’t learn new games. It just doesn’t register’ (Charles, Interview 2). Fluctuating abilities. Struggling with change was also characterized by fluctuating abilities. Participants could no longer perform previously effortless skills, such as adding and subtracting. They experienced days where they could do all the things they used to do, and then they experienced days where nothing seemed to go quite right. Their abilities fluctuated from moment to moment, from day to day, and over longer periods of time: ‘I guess it’s kind of a hit and miss thing. You know. There’s some things you can do easily, and, and others just, are a blank to you, not worthwhile trying’ (Rita, Interview 1). Fluctuating abilities led Rita to question her diagnosis on good days: . . . there’s some days when . . . you know you’re not as sharp as you were, you know, and then there’s other days when you just feel like your old self. So. It’s a, it’s a . . . very funny disease, because you, you think that one time you’re really, must be going downhill, then you’re thinking the next time, that there’s nothing wrong with me, it was my imagination, you know. (Interview 1)

These fluctuations led to a constant monitoring of abilities: ‘So, there again, it’s the challenges and the constant, constant intervening . . . Constantly reassessing, hour by hour, 24/7’ (Alice, Interview 1). Leisure was often more difficult because of fluctuating abilities. An activity may be performed easily one day, and be more difficult the next. For example, Jack found it more difficult to play competitive games as his hand-eye coordination fluctuated: ‘I wouldn’t throw darts now because I don’t know where it’s going to end up’ (Interview 4). Draining energy. Struggling with change was also characterized by draining energy. Participants experienced reductions in capacity for being active: ‘. . . and I get lazy sometimes because I sleep a lot and I don’t seem to have the same get up and go that I once had’ (Jack, Interview 1). Draining energy was depicted in terms of diminished strength and capacity and fleeing motivation and interest. Participants’ experience of diminished strength and capacity was apparent in reductions in vigor to engage in physical and mental activities. For example, Alice’s brain slowed to a stop with too much activity: ‘. . . by the time we do our interview, I’ll be totally, cognitively just, the computer will turn off, as I call it. So, the length of concentration and the length of being able to be tuned in is declining’ (Interview 1). Charles explained how he could no longer go for long walks with his wife: The distance of walking, we used to walk quite a bit, and ah, take rather long walks in the park, trails and so forth. And at the best I can walk from here to [street name] and back which is about a kilometer each way. That’s at best. At times I’m so tired I can hardly make it in. (Interview 1)

Draining energy was also experienced in terms of fleeing motivation and interest in daily activities. Participants lacked the motivation or interest to do the activities they once enjoyed and they associated this with their diagnosis. Alice and Rita lost the motivation to cook and clean: ‘But I just given up cooking . . . and I used to love it, I used to love to cook and have people over, but I don’t do that anymore, you know’ (Rita, Interview 1).


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Figure 1. Charles falls asleep in his chair.

Draining energy had an impact on all aspects of daily life, including leisure. This was often discouraging for the participants, who wanted to maintain active engagement in their lives. Charles included a photo of himself napping in his favorite chair since it was a common activity (See Figure 1). Although he slept a great deal, Charles said: ‘. . . it’s just I don’t want to sleep my life away’ (Interview 2). Frightening awareness. Struggling with change was also characterized by frightening awareness, or alarming recognition of potential future changes: Like I say once I came to a place I can’t read and I can’t think, um, that’ll be a different situation completely. I have friends in the Alzheimer’s wing just walking around and around and around and around. Can’t carry on a conversation. And naturally I know that in reality this may happen. (Charles, Interview 3)

The participants feared being a burden for their families, having to move into long-term care, and not being able to remember their loved ones: You always dread the time, that’s another thought, that you get in your mind, that someday, somebody is going to say ‘we can’t handle her anymore, so she’s going to have to go into a nursing home’, so. And um, I don’t want that to happen either. (Rita, Interview 1)


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Disquieting emotions. The uncertainty of daily life with dementia as a result of muddled thinking led to a range of emotional experiences, including frustration, embarrassment, sadness, and guilt. The variety of emotions could be overwhelming: ‘Um the mood swings are incredible, and because I’ve had past depressions, it’s so easy to slip into a depression again . . . And there’s many days I feel lost and want to give up’ (Alice, Interview 1). Participants felt frustrated when skills were lost: ‘So yeah, there are many, many, many, many days that I get frustrated, I get down, I cry . . .’ (Alice, Interview 3). They were ashamed when they were unable to remember names or activities. Jack gave up violin lessons because he was frustrated when he could no longer read music to play the violin. Charles had difficulty remembering turn-taking when playing games: ‘I can play the [games] that I played before, and even those I forget what the next move is and I have to be reminded. So it’s embarrassing’ (Charles, Interview 3). Embarrassment led to reluctance to participate in leisure activities: I have a hesitation if I feel that I can’t carry on a conversation with somebody because of forgetting names and that. And um but that’s the only thing I worry about is maybe being in a group and feeling kind of stupid because I can’t remember their names . . . (Rita, Interview 3)

The participants felt sadness and guilt about losing valued skills and abilities. They grieved their losses: ‘The money is the one thing that . . . disappoints me. Because it was a simple thing really. And it still is, when you think about it you know’ (Rita, Interview 1). These changes led to greater reliance on others, which, for Alice, Charles, and Rita, contributed to feelings of guilt: And [my husband] likes to cook. He’s not very good at it (laughs), but he does like to cook. And he’ll make cookies, and stuff like that every now and again . . . Then, that gives me a guilt complex, you know. (Rita, Interview 1)

Disquieting emotions reflected all of the changes that the participants struggled with as a result of dementia. Struggling with change was an inevitable part of their dementia journeys, yet participants were hopeful about their lives.

Tackling life with dementia Participants juxtaposed the challenges they faced by tackling life with dementia. They found creative ways to work through challenges and adapt their lives to sustain involvement in valued activities. Tackling life with dementia was composed of reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity. Reconciling life as it is. Participants tackled life with dementia first by reconciling themselves with their new lives. They accepted that they could not change their diagnosis and tried to make the best of it. . . . you can’t expect you’re going to walk away with nothing in life. So you’re going to have some up and downs. And if this is one of the crosses you’ve got to bear that’s okay, you know, that’s how it is. So I don’t like it, but I don’t have to be concerned about it all the time, you know. (Rita, Interview 1)


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Once change was accepted and the inevitable progression of dementia was acknowledged, participants began to prepare for their future. They wished to have control over their lives as their memory loss progressed, and planning ahead helped them to accept the future with a sense of hope. Jack wanted to have control over moving into long-term care by making the decision to move before he’s ready. He felt that making the decision ahead of time would give him some control over his situation instead of waiting until his family had to make the decision because they could no longer care for him: ‘I want to be in the long-term deal, facility, before, before I really need it. I’d rather be there ahead of time instead of after until it was too late to be a half decent guy’ (Interview 1). Participants also reconciled themselves to changes in their leisure. For example, Charles accepted that he would not always be able to sing in his choir and hoped he would know when it was time to withdraw. Reconciling life as it is was not always easy, but it helped the participants to work through the changes and live with a sense of hope, allowing them to be proactive in managing dementia. Battling through by being proactive. Participants acknowledged that dementia was a progressive disease without a cure, yet they fought dementia instead of letting it get the better of them: And I know that there’s no cure. That’s why, I guess I’m fighting to stay on top, you know. And, and uh, not let it get me down, because I think . . . and maybe I’m wrong, but ah, I think that that keeps you going better than if you were sitting in a corner and feeling sorry for yourself. You know. And that doesn’t get you anywhere at all, so. (Rita, Interview 1)

Participants were proactive in their efforts to live with dementia by using methods which included stalling decline with activity, maintaining a sense of humor, avoiding stress and worry, and being open (or not). Stalling decline with activity included participating in leisure activities that were believed to slow the progression of dementia. Participants chose activities to keep their minds active, including jigsaw puzzles, crosswords, computer and electronic games, and card and dice games (See Figure 2). Stalling decline became cyclical – as participants engaged in leisure pursuits in order to slow the changes, they felt they increased the length of time they would have the ability to engage in that particular activity: Because I think that . . . I feel that the decline is slower. If you keep your mind active, you don’t lose . . . same way with the electronic games. It’s ah, keeping my mind active and so I might be able to, to play longer in fact I do it as much as I do, I might be able to continue to do it longer, than I expect what could happen with Alzheimer’s. (Charles, Interview 2)

Participants also engaged in physical activities to maintain their current abilities, slow further decline, and maintain independence. These activities included walking, pole walking, dancing, golf, and fitness classes. All of the participants maintained a sense of humor and laughed at themselves in order to handle the changes and challenges that they faced: ‘I can’t change Alzheimer’s, but I can laugh at my mistakes’ (Charles, participant observation field notes). Using humor helped participants deal with negative feelings: And the bad things that happen, if you can make it humorous it helps allay, the umm . . . frustration and, the and umm . . . how would you say it? A down feeling, a degrading feeling of yourself, yeah. So if you can use humor at any time, it’s even better. (Alice, Interview 1)


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Figure 2. Charles plays mentally stimulating electronic games.

Occasionally, participants responded to the changes by avoiding stress and worry. They tried not to fret about the changes that were occurring, such as forgetting where they had left an object: ‘I don’t get really hung up on things like that. No I don’t. Because I think, uh, it will turn up somewhere, you know’ (Rita, Interview 1). Avoiding more challenging leisure activities eased the discomfort of feeling different. Charles refrained from speaking out in bible study: Um, bible study’s a good example of that where I used to be one of the first to raise my hand or express myself, and I’ve backed off completely. Um, sitting in the front row where I can see better and hear better, but the leader knows I don’t want to be called on, because I know I’m going to have trouble expressing, or think I am anyway. So I just sit there like a bump on a log. I enjoy it though, but it’s my way of coping. (Interview 4)

Alice noted that she would cancel social engagements on days that she found to be difficult: ‘And if there’s some particular outing that I’m just not up for, I avoid it.’ (Interview 4.) Evading worry helped participants focus on abilities rather than their losses. Finally, participants responded proactively to memory loss by being open (or not). Both disclosure and non-disclosure led to comfort and safety. Being open explained unusual behavior and eased embarrassment for Alice, Charles, and Jack: ‘And there’s no more wondering what’s wrong with him. And so I’m much freer and I think the people that I um . . . meet here and become friends with, most of them know it’ (Charles, Interview 1). Being open about their diagnosis helped explain their forgetfulness when playing games or spending time with friends. Yet, Rita did not discuss her memory loss with others in order to avoid being considered only in terms of her diagnosis: . . . today we had a nurse in here . . . and my daughter was here and she says ‘My mother has Alzheimer’s you know’ and I was kind of shocked because I thought, we don’t talk about that


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you know and um, but I don’t think it’s a thing that you have to be ashamed of . . . but it’s something you’d rather not talk to people about because some people think oh isn’t that too bad . . . and it isn’t a terrible thing to go through as far as this stage is concerned though. (Interview 4)

Participants faced their challenges and worked through them, gaining hope from their ability to find creative solutions, deal with their emotions, and fight memory loss through leisure. Living through relationships. Close-knit, supportive relationships with family and friends were vital to tackling life with dementia. Relationships with others were composed of supporting each other, being together to secure a sense of belonging, trusting in others, and being accepted. Relationships were characterized by supporting each other as family and friends provided emotional and practical support that helped participants to live with memory loss. Participants, in turn, provided support for their family members and other people living with memory loss. Emotional support involved validation of feelings and experiences, being treated the same as they were before diagnosis, encouraging participation in leisure, and advocating with the participants. Practical support included transportation, helping with errands, keeping track of appointments, and assistance with paying. Relationships with other persons with memory loss were particularly supportive, since they allowed for comparing experiences and encouraging each other throughout the journey. Alice included a photo of herself and a friend to demonstrate this (see Figure 3). . . . it’s a combination of peers being together, friends being together, with a purpose . . . it gave us time to talk about what we each found difficult at that period of time, with our journey. So there

Figure 3. Alice’s relationships with others allow her to share her experiences.


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Dementia 13(1) again [the photo] reinforces the bond and for me it gives me a purpose to continue because I know I’m not alone. (Interview 2)

Family members and friends encouraged and supported participants in their leisure pursuits. For example, Charles’ friend agreed to support him in his interests: One day . . . the lady in charge of the um, support group . . . said that really we should have Alzheimer partners. Someone that can learn to know you and your interests now and then as you lose these can remember what the interests were and help bring back memories and so forth. And um, I mentioned this at the table that I was looking for a partner and . . . a friend of ours said ‘I’d be happy to be your partner for you.’ And so we eat together a lot, we play games from time to time, we go out to dinner from time to time. Go to bible study every week. Go to hear musicals. (Interview 2)

Persons with dementia supported their care partners and family and friends by sharing chores, providing advice, and sharing their experiences with dementia: The fact that um, [my wife] and I are still able to enjoy looking after each other, is two streets, it’s not one way. And I feel good about. In the fact that I, that I purposely try very hard to do what I can to help [my wife] to be comfortable. (Charles, Interview 4)

Reciprocating support reminded participants that they were still able to make a contribution. Living in relationships was characterized by being together to secure a sense of belonging. Engaging in leisure or other daily tasks with spouses, other family members, and friends led to feelings of happiness and connection. Alice’s photo depicting sharing a meal at a restaurant with family and friends represented the significance of being together (see Figure 4): ‘. . . like

Figure 4. Alice has dinner with friends and family.


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anytime we’re together with [friends], and [family] we’re just one big family. . .’ (Interview 2). Spending time with others resulted in a sense of belonging, enjoyment, and happiness. It also provided motivation for continuing on the journey of memory loss with a sense of hope despite the changes that were occurring. Living in relationships involved trusting in others. Rita had faith that other people would look after her best interests, even complete strangers. Alice emphasized that trust, although difficult, was essential: . . . you have to trust who you’re working with in order to be comfortable and relaxed with them. And have that confidence in the other person. So . . . those assisting you . . . I have to have trust in them . . . Trust is a very strong issue I think for most of us. (Interview 1)

The final subtheme of living through relationships was being accepted by others. Participants’ strengths and limitations were acknowledged by their family and friends. Rita’s husband accepted her, perhaps more than she accepted herself: ‘Yeah, yeah, my husband especially, you know will say ‘‘You know you can do a lot of things Rita that you did, that you don’t feel like doing now’’’ (Interview 3). Other people acknowledged the participants’ strengths, and informed them that they were coping well with dementia: ‘. . .I feel that I cope well and people give me affirmation that um, I sort of handle it, handle my disease well’ (Charles, Interview 2). Similarly, Alice said: ‘The people that really understand the disease are totally amazed at how I’m coping’ (Interview 1). However, occasionally other people denied the participants’ experiences of dementia, suggesting that they did not appear to have dementia at all, which was frustrating for the participants who wanted acknowledgement: I guess it bothers me a little when people say ‘I don’t think you have Alzheimer’s.’ And I simply say, ‘Well look, I have two opinions and um, specialists both say I have it’. I know that I have it. I can feel it. Sense it. (Charles, Interview 1)

While denial of dementia from others was disheartening for participants, this feedback indicated that they were indeed handling their diagnosis very well. With the support, friendship, and acceptance of others, participants retained a sense of hope while living with memory loss. Being optimistic. Participants also tackled life with dementia by maintaining positive attitudes towards their present and future. Their optimistic outlooks instilled a sense of pride and provided a way to resist the negative doom and gloom beliefs that society tends to hold about dementia. Maintaining an optimistic outlook on life was vital for balancing challenges with a sense of hope, rather than just falling into despair about what had been lost. Participants maintained optimism by feeling hope for today and tomorrow, focusing on the positive, comparing self to others, and normalizing experiences. The participants experienced feeling hope for today and tomorrow as they wished for slow progression and new drugs that might protect against pathology. This sense of hope juxtaposed the frightening awareness that participants had for the future. Immediately after telling me about his fear of wandering in a nursing home, unable to talk or think, Charles was hopeful: ‘Medications are coming on the market all the time, face that when the time comes’ (Interview 3). Despite fear of future memory loss, participants had hopes, aspirations, and dreams for their lives. Participants no longer took their time for granted and lived in the moment, taking


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advantage of the time they had to enjoy life. Charles and his wife spent time travelling while they still could; Jack played golf as often as possible, and Alice had a list of dreams she wanted to accomplish, including going to see a concert of her favorite singer and going to a local hockey game. Alice explained how her diagnosis gave her the opportunity to do what she wanted: Working full time and being a single mom, there was leisure things I put on hold, so actually with the announcement of the disease . . . what are the things that I always wanted to do leisurely that I didn’t have time to necessarily to do before? So it actually in a way was a blessing. (Interview 2)

Participants focused on the positive aspects of their lives and their remaining abilities. They counted their blessings: ‘Um . . . I pride myself I guess in feeling that I have an attitude of gratitude (chuckles). I have so many things to be grateful for’ (Charles, Interview 4). Rita believed that having a positive attitude helped her to tackle life with dementia: ‘I think, I really believe, keeping your wit about ya and looking on the brighter side of life is the only way to go’ (Interview 3). Participants celebrated their remaining capacities instead of keeping track of what they could no longer do. Alice and Rita celebrated completing challenging tasks like cooking a meal: Last night, this is a very big thing for me, last night [my husband] had a meeting . . . so I said, ‘well I’m going to cook us supper’. . . I made a casserole, so when he came in I had it ready . . . and that the was the first time and I felt like I’d really done a big job you know . . . it was an accomplishment . . . (Rita, Interview 2)

In addition to focusing on the positive, participants compared themselves to others living with memory loss, particularly those who were worse off than they were in order to emphasize their own abilities: . . . when I see some of my peers going down a little bit and I’m thinking oh I’m so grateful because I’m still where I am. Um, yes there are changes, but um, I’m still able to cope with them, where I see others really, really struggling and that makes me sad. (Alice, Interview 4)

The participants did not compare themselves to persons with end stage dementia and to persons without memory loss. Doing so may have protected against frightening awareness. Finally, participants maintained optimism by normalizing their memory loss which decreased worry. By normalizing her symptoms, Rita avoided worrying about herself and her problems: ‘I see a lot of people who have never been diagnosed with Alzheimer’s who are doing the same thing. So I said, it’s not a big deal with me’ (Interview 2). Normalizing provided comfort: ‘. . . and I’m, I’m so encouraged when somebody says ‘‘Gee I can’t remember the name of that person!’’’ (Rita, Interview 1.) However, when normalization was forced on participants by others, they experienced an uncomfortable dismissal of their dementia journeys: ‘Those that don’t understand say ‘‘well I have memory loss, I forget things too’’’ (Alice, Interview 1). Comments like this were particularly paradoxical as the participants felt they were coping well if others did not recognize their memory loss, yet at the same time they felt as though the challenges they were facing were disregarded. Prolonging engagement in meaningful activities. Finally, participants tackled life with dementia by prolonging engagement in meaningful activities. Participants prolonged engagement by seeking help to improve a situation, and altering leisure.


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Charles and Alice sought help to improve a situation by asking family, friends, and formal service providers for assistance. For example, Charles asked his doctor for a magnifier to help him read. Alice requested help with letter writing, an activity she enjoyed but could no longer do independently: ‘So, that’s going to open a whole new field of accomplishment for me as well. So, there again, um, leisure time is going to be even more pleasant, more enhanced’ (Interview 1). By recognizing and responding to limitations, both Alice and Charles were able to maintain involvement in leisure: ‘Because I’m giving, not giving in, I’m realizing my own self limitations, and acknowledging it, and reacting to it’ (Alice, Interview 1). In asking for help, participants both enabled themselves and were enabled by others to prolong engagement in meaningful activity. Participants also prolonged engagement by altering leisure. They adjusted both the activity and their goals to continue to succeed. Although the nature of the activity was different, its meaning and value were retained. Alice assessed her capacity, acted within it, and altered her activities to match her new capacity to retain meaning and fulfillment: . . . I have to pick out the things that I’d really like to do that are within my capabilities. Because if I do that, then I achieve the maximum of happiness and pleasure. But if I try to pick out something that’s beyond my ability to understand or to enjoy, it will not give me that fulfillment . . . So why do something like that, if I’m not going to achieve what I really want, when I can do something, maybe a little lesser in scope, but achieve just as much and maybe more. So I think that’s really a key element too, is realizing what you can get the . . . most for the buck. And the fact of self satisfaction. (Interview 1)

However, going beyond capacity led to feelings of frustration and disappointment. Finding the right balance between capacity and challenge could be difficult: ‘And it’s not easy. Because I tend to set my, my goals higher than what I can attain. So learning how to bring the two together so we meet’ (Alice, Interview 1). Participants altered their activities to maintain involvement in a variety of ways. Jack and his wife switched from ballroom to social dancing so they could continue to enjoy the activity without the pressure of following ballroom dancing etiquette (see figure 5): ‘. . . it’s the fact that . . . we’d taken lessons forever. And, and, and now it isn’t worthwhile because I can’t remember what I’m doing anyways, so we just play a very, very relaxed dance’ (Interview 2). Walking poles enabled Charles to maintain participation in physical activity: ‘And pole walking is easier . . . than walking in some senses because you’re using all four limbs. And um, going up and down a hill it’s easier with poles than it is without’ (Interview 2). Participants changed the nature of the activity as well. Competitive leisure became individual or cooperative. For example, Jack, who always loved competition, practiced darts alone instead of competing with others: ‘And darts, since I’ve had Alzheimer’s . . . I don’t, I don’t play in . . . the league anymore, I just go and practice, practice, practice throwing darts at the dart board . . .’ (Interview 2). Alice turned a competitive dice game into a cooperative game (See Figure 6): It wasn’t that one was out to get the highest score, it was sort of like camaraderie, so it was, yeah. So there was times I would see them and there was a lot of times I’d miss certain numbers and she’d point them out, so yeah, it was a camaraderie, yeah. (Alice, Interview 2)

Abilities were reassessed continually and activities adjusted accordingly: Even if it means going back four or five steps. Starting over again. And building it up. So it’s a 24/7 adaptation and changing, um . . . process for me. No two days are the same. Um . . .


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Figure 5. Jack and his wife switch from ballroom to social dancing.

mentally, physically, emotionally, the whole, spiritually, the whole ball of wax so to speak. It’s a 24/7 adjustment. (Alice, Interview 3)

Unfortunately, not all activities could be altered to prolong participation and sometimes participants withdrew from activities when challenges could no longer be addressed, particularly in group activities, ‘. . . I’m backing away from people. Where I used to be more aggressive in terms of being outgoing. I am more comfortable sitting back and letting the conversation go’ (Charles, Interview 1). Participants also changed their own expectations of their performance. Doing the best one could was more important than doing as well as one did before diagnosis. Jack changed his expectations for physical activity, while maintaining a sense of humor and self-acceptance: Like I tell everybody ‘I’ll do it the best I can and I know it will be rough enough’. I use that all the time. I’ve always been an athlete, not a good one, but . . . really all my life, I played ball and I played soccer and hockey . . . Now I tell everybody I used to run a hundred yards in ten seconds, and now I go out and run for ten seconds (laughs). (Interview 3)


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Figure 6. Alice turns the competitive dice game into a cooperative game.

Accepting their new capacities helped participants to alter their expectations of themselves. Rita avoided challenging activities and chose activities in which she knew she could be successful. For example, she played a simple card game instead of learning a more difficult one: Uh, no it’s a very easy game we play and she plays bridge a lot, and I keep asking her to show me how to play it and she says it’s very complicated, you know. And I don’t think I’d really want to play it, you know. I like the easy ones. (Interview 2)

Furthermore, setting flexible goals allowed participants to meet their abilities to continue to participate in meaningful activity.

Discussion and conclusion Through interviews, photos, and participant observation, this study highlighted the complexity of living with memory loss. Our exploration of leisure within the dementia context provided insight into not only the experience of leisure, how it changes, and how participants adapted to the change, but also their day to day experience of life with memory loss. The findings both support and contribute to our current understandings of dementia and the role of leisure within that experience. The participants lived through many of the symptoms commonly associated with dementia, such as changes in cognition, judgement, problem solving, and memory. Yet, by sustaining leisure engagement, they continued to actively engage and find meaning in life. The findings reveal that leisure is meaningful to persons living with dementia, and expand our understanding beyond the role of therapeutic recreation programs in changing behaviour in long-term care. The participants underwent what Keady and Gilliard (1999) referred to as an active process of learning to live with dementia. Jack, Alice, Charles, and Rita reconciled the


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changes, drew upon the support of their care partners, and subsequently felt as though they were in control of their situations. Persons with dementia often find resourceful ways to cope with their symptoms (Clare, 2002; Clare, Rowlands, Bruce, Surr, & Downs, 2008; Harman & Clare, 2006; Harris & Durkin, 2002; Ohman, Josephsson, & Nygard, 2008; Parsons-Suhl, Johnson, McCann, & Solberg, 2008; Sorensen, Waldorff, & Waldemar, 2008) and the participants of this study were no exception. Persons with dementia used ‘. . . a spectrum of coping strategies to preserve personal dignity and value’ (Sorensen et al., 2008, p. 297). Participants experienced hope by drawing on a variety of coping strategies similar to those in the current literature, such as focusing on the positive aspects of their lives, and adapting to changing abilities. They applied these coping strategies to maintain engagement in meaningful activities. Leisure participation contributed to coping with symptoms of dementia and feelings of control over one’s situation. Keeping an active mind is valued by persons living with dementia for staying on top of the disease (Phinney, 1998). Actively engaging in mentally stimulating and physical activities allowed the participants to feel as if they were fighting their memory loss. This way of coping contributed to a sense that leisure itself was meaningful, and one’s leisure choices could be both enjoyable and beneficial. Leisure participation contributed to a positive attitude, which helped them cope with dementia (Harris & Durkin, 2002). Persons living with dementia continued to feel optimistic and live life to the fullest (Keady et al., 2007). Jack, Alice, Charles, and Rita adopted positive attitudes because they believed that failing to do so would lead to feelings of depression, which could be very difficult to overcome. Focusing on remaining abilities is important for managing life with dementia (Beard & Fox, 2008). While some people may have difficulty deciding whether they should accept dementia or fight it (Harman & Clare, 2006), the participants of this study opted for both by remaining actively involved in life while reconciling the reality of their diagnosis and changes in cognition. Their positive attitudes contributed to their feelings of hope about their lives and counteracted the losses they were experiencing. Hope may not always play such a predominant role in the lives of persons with dementia. Diagnosis can be experienced as ‘. . . a death sentence; as their memory got worse, they were also thrown into a future that would be similar to death’ (Parsons-Suhl et al., 2008, p. 40). One’s attitude may be fluid – immediately at diagnosis, it might seem more like a death sentence, but as people reconcile the diagnosis, having a positive attitude might be possible. Also, it may be easier to have a positive attitude on good days than on bad days. Although future memory loss was feared, Jack, Alice, Charles, and Rita believed that acquiescing to such negative thoughts about their lives would not be a particularly useful coping strategy. Instead, in an ongoing process, they fought to keep these negative feelings at bay. Feelings of well-being in dementia were associated with the ability to manage everyday life and being useful, while anxiety is associated with old age, lack of a cure for dementia, and worrying about the progression of dementia (Sorensen et al, 2008). Alice, Charles, Rita, and Jack experienced well-being when they were able to manage daily life and make contributions to their families and communities, but at the same time they feared what their futures might hold. Memory loss is experienced as a balancing act between losses and remaining abilities (Keady et al., 2007; Pearce et al., 2002; Steeman et al., 2007). Steeman et al. (2007) suggested that persons living with dementia focus on the positive aspects of their lives and


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minimize losses in order to balance feelings of being devalued, lonely, uncertain, shameful, and useless. Jack, Alice, Charles, and Rita revealed the complexity of life with memory loss as they, too, worked to balance feelings of hope with the losses they faced. In leisure, they balanced their losses by focusing on abilities and demonstrating that they, as persons, still had worth. This balancing act led to a range of emotions, from embarrassment and frustration, to pride and enjoyment when challenges were overcome. However, as dementia progresses, leisure may become increasingly difficult and balancing challenge and hope may become more arduous. While the findings of this study support much of what is already found in the literature, they add to our knowledge base. Our findings highlight the difficulties in separating out leisure from daily living and point to the interconnections between daily life experiences and leisure experiences. They move us beyond our understandings of the benefits of leisure among persons living with later stage memory loss by emphasizing that leisure has a vital role to play in early stages, particularly in maintaining a sense of hope in the dementia context. Furthermore, this study is unique in its focus on leisure (as opposed to meaningful activity, or daily occupations which include activities other than leisure) and highlights how persons living with memory loss adapt their leisure in order to maintain active engagement in life. The findings of this study have implications for both practice and further research. They highlight the importance of supporting persons living with dementia to continue to participate in meaningful leisure activities. We need to move beyond the ‘prescriptive’ activity so common in therapeutic recreation to determine what it is older adults living with dementia find meaningful about their leisure, and use that leisure to help them sustain abilities and maintain a sense of hope. This study opens the door for future research exploring the meaning of leisure within the context of dementia. While it begins to shed light on the meaning of leisure, more research is still needed to understand how meanings change or fluctuate as dementia progresses, and what can be done to enable participation in meaningful leisure over time as abilities continually change and leisure participation becomes increasingly challenging. Persons living with early stage memory loss use leisure in everyday life to balance the challenges they face. Furthermore, their experiences with leisure reflect the ways in which persons with memory loss negotiate their changing abilities and the subsequent adjustments they must make in order to life live fully with dementia.

Funding statement This study was funded by the Alzheimer Society of Canada.

Conflict of interest statement None declared.

Note 1. Participants’ names have been changed to protect confidentiality.


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M Rebecca Genoe, PhD, is an Assistant Professor in the Faculty of Kinesiology and Health Studies at University of Regina, Regina, SK, CANADA S4S 0A2. Sherry L Dupuis, PhD, is a Professor in the Department of Recreation and Leisure Studies and the Director of the Murray Alzheimer Research and Education Program (MAREP) at the University of Waterloo, Faculty of Applied Health Sciences, Waterloo, ON, CANADA N2L 3G1.


Interpersonal communication in the context of dementia.

Leisure activities as dementia care strategy.

[Handover between home and respite care facilities : Delphi survey within the context of continuity of care for people with dementia].

Graviton propagation within the context of the D-material universe.

Carcinogenesis explained within the context of a theory of organisms.

Role of alpha-transinducing factor (VP16) in the induction of alpha genes within the context of viral genomes.

Understanding dementia in the sociocultural context: a review.

Cardiovascular diseases in Ghana within the context of globalization.

Parent status and generativity within the context of race.

Leisure activities, apolipoprotein E e4 status, and the risk of dementia.

The Fear of Leisure.

The Uses of Leisure.

The role of faith in the psychotherapeutic context.

Interactions between a pollinating seed predator and its host plant: the role of environmental context within a population.

Setting a good example: supervisors as work-life-friendly role models within the context of boundary management.

[Discharge of the surgical patient within the context of the health system].

Temporal context processing within hippocampal subfields.

Nodule performance within a changing environmental context.

Exploration of the concept of collaboration within the context of nurse practitioner-physician collaborative practice.

Communities of microbial eukaryotes in the mammalian gut within the context of environmental eukaryotic diversity.

Cavernous angioma within the context of anaplastic oligodendroglioma: case report and review of the literature.

The context of empowerment and self-care within the field of diabetes.

Automation, Leisure and the Unions.

The Role of Semantic Context in Early Morphological Processing.