Spousal caregivers and persons with dementia: Increasing participation in shared leisure activities among hospital-based dementia support program participants

Abstract

Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses’ participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers’ needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions.

Keywords

activity participation caregivers dementia leisure shared activities

Introduction

In Canada, approximately 1 in 11 individuals over 65 lives with dementia, a number that is expected to double in the next generation (Alzheimer Society of Ontario, 2012). Persons with dementia (PWD) experience memory loss, compromised communication skills and impaired insight which affect their ability to participate in relationships and decisions regarding personal care and treatment (Alzheimer Society of Ontario, 2012). These lost capacities must be compensated for and it is family caregivers, most commonly spouses of PWDs, who assume this responsibility (Brodaty & Donkin, 2009; Sadavoy, Wesson, & Nelles, 2012).

Most literature to date focuses on interventions to decrease negative aspects of caring for PWD, like caregiver burden and isolation (Lilly, Robinson, Holzan, & Bottorff, 2012); however, some research has examined positive aspects of caregiving. In one study, nearly 75% of caregivers of PWD could identify at least one caregiving benefit, including companionship, fulfillment, and enjoyment (Cohen, Colantonio, & Vernich, 2002). Further, caregivers reporting satisfaction with their role and greater benefit from caregiving also reported greater life satisfaction (Haley, Lamonde, Han, Burton, & Schowetter, 2003) and were less likely to experience depression, burden or poor health (Cohen et al., 2002).

Engagement in shared leisure activities allows caregivers to gain greater satisfaction from their role and perceive it more positively (Carbonneau et al., 2010). Leisure activities provide caregivers and PWD a means to improve their relationship and find new ways to relate (Carbonneau et al., 2010), as these activities facilitate enjoyment, social interaction and connection (Dupuis et al., 2012; Fazio, Chavin, & Clair, 1999; Phinney, Chaudhury, & O’Connor, 2007; Polatajko et al., 2007).

Recent studies (Genoe & Dupuis, 2011, 2014) found that engaging in meaningful activity allowed persons with early stage dementia to cope better with their illness by increasing their sense of control over symptoms and focusing on positive aspects of their lives and remaining abilities. Leisure activities can also provide PWD with opportunities to escape stresses of daily life, grow through physical and mental stimulation, express themselves, find purpose (Dupuis et al., 2012) and provide a sense of belonging and enhancement of personal identity and autonomy (Phinney et al., 2007).

The Alzheimer’s Association (2014) states activities for PWD should have purpose and focus on their interests, needs, and strengths. Creative arts as leisure activities can be accessed by PWD in a way other types of activities cannot by capitalizing on procedural memory, which remains more intact during the disease process (Crystal, Grober, & Masur, 1989). In dementia, communication skills are impaired, and arts-based activities can be an alternate means of self-expression (Hanneman, 2006) verbally, non-verbally, and emotionally (Hayes & Povey, 2011; Killick & Craig, 2012; Lee & Adams, 2011). Arts-based groups including making or appreciating visual art, theatre, music and dance have proven to be pleasurable and meaningful for PWD (Halpern, Ly, Elin-Frankston, & O’Connor, 2008; Hamill, Smith, & Röhricht, 2011; Kinney & Rentz, 2005; Rylatt, 2012; Stevens, 2012) particularly as interest in music and rhythm may persist after language and other cognitive functions decline (Madori, 2007; Riley, Alm, & Newell, 2009; Sacks, 2007). Programs like “Meet me at MoMA” at the Museum of Modern Art in New York (Rosenberg, 2009), and community based singing groups for PWD like “Singing for the brain,” in the United Kingdom, have arisen concurrently with discoveries that PWD benefit from community based arts programs (Bannan & Montgomery-Smith, 2008). In two studies, participation by PWD and their caregivers in both a six session drama program (Lepp, Ringsberg, Holm, & Sellersjo, 2003) and a six week singing program (Davidson & Fedele, 2011) improved quality of interactions and frequency of communication during and between group sessions.

The relationship between PWD and caregivers and their interaction through leisure activities can be viewed from the perspective of symbolic interactionism (SI) (Blumer, 1969). This qualitative framework (Jacob, 1998) guided development of the study’s research structure. SI assumes individuals develop a sense of identity through social interactions (Blumer, 1969). SI states individuals act toward others based on the meaning that person or entity (e.g. a leisure activity) has for them, and that meaning is derived from social interactions and continual interpretations of those interactions (Blumer, 1969). Meaning is revised as interactions occur and used to guide future actions (Blumer, 1969). Caregivers actively construct and modify their caregiving role based on the meaning they attach to it. The meaning then guides how they perform as caregivers (Dupuis, 2000). Participation in meaningful leisure activities by PWD and caregivers can impact caregivers’ view of their role and future actions toward PWD.

Selective optimization with compensation (SOC) theory is a model within the SI framework (OpenStax College, 2013) and can be used to understand how the meaning of a role may guide a person in leisure activities. According to Baltes and Baltes’ (1990) theory of SOC, individuals select activities to optimize the effort or resources expended. With age, they may engage in fewer activities because of diminished resources (e.g. energy, money, health). Individuals optimize their existing abilities and resources through practice or reallocation of resources to meet specific goals (Freund & Baltes, 2002).

Caregivers of PWD have identified activity and recreation as areas where they need the most education and training to respond to changing needs and abilities of PWD (Buettner & Languish, 2001). Even though caregivers wish to utilize arts-based activities at home, research in this area is limited (Miller & Butin, 2000) with much research focused on institutional based activities (Dupuis & Pedlar, 1995). More research is needed on community-dwelling PWD and family caregivers as 55% of PWD in Canada currently live at home and this figure is expected to rise (Alzheimer Society of Canada, 2010).

Caregiver coaching in leisure pursuits incorporating art-based activities for PWD may represent a possible solution. Dupuis and Gillies (2014) investigated optimization of PWD’s engagement in leisure and strongly asserted that PWD should be included in determining their own leisure needs and how they are addressed. Health professionals who facilitate arts-based groups for PWD are a resource for caregivers regarding their loved one’s preferences and abilities, and are well-positioned to guide caregivers. Preferences and needs voiced by PWD emerge naturally in groups and are not always known to caregivers. Such facilitators have additional knowledge to share with caregivers (e.g. communication strategies, counselling skills) to enhance leisure participation.

The purpose of the present study is to better understand caregiver needs for leisure support at home. The study’s research questions are: (1) What are caregivers’ perceptions of their spouse with dementias’ participation in shared leisure activities since dementia onset? (2) What information and resources do caregivers need to support leisure activities with and for PWD; and (3) How can facilitators of arts-based groups for PWD enable caregivers to increase their spouses’ participation in shared leisure activities at home?

Methodology

Study design

This exploratory study used a qualitative descriptive method, guided by the SI framework. Limited research on shared leisure activities for PWD and caregivers at home made an exploratory study fitting (Green & Thorogood, 2004). Qualitative descriptive methods produce a rich description of a phenomenon (Sandelowski, 2000) and are useful to gain first-hand knowledge of participant experiences with a particular topic (Neergaard, Olesen, Andersen, & Sondergaard, 2009). This approach is consistent with the objectives of the study that aimed to elucidate caregivers’ views.

Participants and recruitment

The study sample consisted of nine spousal caregivers; two additional individuals consented to participate but were unable due to unexpected caregiving demands. Average age of caregivers was 72 years (range 66 to 80 years). Average number of years since dementia diagnosis was 3.8 years (range 0.5 to 7 years). Additional participant characteristics are in Table 1.

Table 1.

Characteristics of spousal caregivers.

Characteristic	Participants (n = 9)
Gender
Women	5
Male	4
Spouse’s primary caregiver	9
Lives with PWD at home	9^a
Schooling
Secondary	4
College	2
University	3
Income (annual)
Over $100,000	2
$75,000–99,999	4
$50,000–74,999	1
$20,000–49,999	1
No response	1

^aOne spouse moved to long-term care home during study.

Participants were recruited from the Reitman Centre CARERS Program, an intervention for family caregivers delivered by psychiatrists and trained mental health clinicians at the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training at Mount Sinai Hospital (MSH), Toronto. The 10-week evidence-based program is comprised of four components: dementia education, problem-solving techniques, experiential skill building for challenging caregiving interactions and attention to caregivers’ emotional experiences. An arts-based program for PWD runs concurrently with the CARERS program facilitated by an occupational therapist. The group’s aim is to facilitate members’ participation in program activities, engagement with one another and optimization of remaining capacities. General feedback regarding PWD’s group experience is provided to caregivers after each session.

Inclusion criteria for study participation were: (a) age at least 18 years, (b) had attended the CARERS Program, (c) be caring for a community dwelling spouse with dementia who has attended the concurrent arts-based group at MSH, and (d) be residing with their spouse with dementia.

A purposive, convenience sampling method was used as three researchers were affiliated with the CARERS Program, providing access to participants. Caregivers who had attended the CARERS Program with their spouses prior to and during the one-year study duration were recruited by telephone by two researchers unaffiliated with the CARERS Program. Of 20 spousal caregivers contacted, seven were unreachable and four declined participation. Focus groups were held at times convenient to caregivers. They could not be held when participants attended clinic for psychotherapy groups due to logistical and ethical constraints.

Data collection

Participants attended one of three one-hour focus groups held at MSH. Focus groups were chosen for data collection to allow in-depth discussions of chosen topics, and group interaction produces data that could not be gained from individual interviews (Rabiee, 2004). Two researchers without prior contact with participants conducted the focus groups using a moderator guide comprised of open-ended questions and probes as needed for further elaboration of specific topics. Focus group topics included: 1. PWD’s participation in shared activities with their caregiver prior to and since dementia onset. 2. Caregivers’ preferred content and delivery method of information they believe would be beneficial to receive from the arts-based group facilitator. Details of focus group questions are available upon request. Audio recordings of focus groups were made and transcribed verbatim. To maintain confidentially, identifying information was removed from all data and data were stored on an encrypted and password protected storage device. Researchers took notes during sessions, recording participants’ responses and observations, including non-verbal behaviour.

Data analysis

Braun and Clarke’s (2006) thematic content analysis process was used to analyze the data. Researchers transcribed audio recordings of focus groups and reviewed transcripts to identify general patterns of meaning (Braun & Clarke, 2006). NVivo Version 8 computer software was used to manage and code transcribed data. Researchers independently generated initial codes for data to determine emergent categories and overarching themes (Braun & Clarke, 2006). Researchers collectively discussed themes identified, resolved any areas of disagreement, and finalized themes. This form of peer debriefing ensured accuracy of researchers’ data interpretation (DePoy & Gitlin, 2005). To further increase credibility of the findings, triangulation methods were employed through consultation with an external researcher expert in caregivers of PWD and qualitative research. Focus group transcripts and themes with descriptions and supporting quotes were provided to the external researcher for review. This researcher provided authors with external perspectives on theme development and data interpretation, challenged researchers’ assumptions and ensured more thorough data analysis. Reflexive journals were also implemented to increase trustworthiness of data analysis, by enhancing researchers’ awareness of their own biases that may influence data collection and analysis (DePoy & Gitlin, 2005). During the study, both primary authors were completing Master’s degrees in Occupational Therapy and had previous clinical experience working with PWD and their families. The secondary authors, including a psychiatrist, clinical researcher, and occupational therapist, had several years of combined clinical experience in this area.

Ethical considerations

Research ethics approval was obtained from MSH Research Ethics Board (REB) and University of Toronto REB. Participants provided written informed consent and were informed of the study’s voluntary nature and that participation would not affect future care at MSH. Participants were provided access to psychosocial support after focus groups if needed.

Results

An overarching theme containing three major themes emerged following focus group analysis (Table 2). Themes are presented below and illustrated by quotations from participants. The overarching theme, “iterative steps taken by caregivers as they strive to create enjoyable moments with their loved ones” highlighted the abundance of social signs and cues caregivers encountered and had to respond to (or filter out) during daily interactions with PWD, and others in the “caregiving circle” (e.g. family, friends, healthcare professionals). Three major themes collectively described the iterative course that caregivers followed to make appropriate and necessary adaptations to allow PWD’s meaningful participation in leisure activities: Recognizing and acknowledging changes, Making sense of changes and conflicts, Embracing changes and forging ahead.

Table 2.

Themes and sub-themes that emerged from analysis of data from focus groups.

Themes	Sub-themes
Recognizing and acknowledging changes	Caregivers recognizing changes in PWD Understanding PWD’s functional and cognitive abilities •Recognizing changes in PWD’s leisure engagement
Recognizing and acknowledging changes	Caregivers recognizing changes in themselves From being a spouse to being a caregiver •Negative emotions connected to changing experiences and roles
Making sense of the changes and conflicts	Reasons attributed to changes in PWD’s leisure needs or interests Understanding changes in caregivers’ own emotional state
Embracing changes and forging ahead	Redefining leisure in the context of dementia A meaningful support system Importance of collaborative relationships/ partnerships with health professionals Information needs of caregivers Seek support and learn from other caregivers

Theme 1: Recognizing and acknowledging changes

This theme is based on one of the three basic premises of SI which states, “The meaning of things (events) is derived from, or arises out of, social interactions that one has with others and society” (Blumer, 1969, p. 2), and focuses on how “the human being may be understood as a social person” (Charon, 2010, p. 31). As spousal caregivers reflected on past versus current experiences with the PWD, they recognized and acknowledged change. Changes reported herein were drawn from PWD’s leisure participation. Two subthemes focused on (1) apparent changes in PWD as observed by caregivers (functional and cognitive abilities and leisure needs) and (2) self-perceived changes in caregivers (from being a spouse to being a caregiver, negative emotions connected to changing experiences and roles).

In quotes presented below, “FG#” refers to the specific Focus Group the participant attended and “P” refers to the Participant quoted.

Subtheme 1a: Caregivers recognizing changes in PWD

Understanding PWD’s functional and cognitive abilities

One change noted by caregivers was directly associated with their understanding of dementia. Caregivers learned to recognize that decline or loss of PWD’s functional and cognitive abilities were symptoms of dementia: ‘the problem is that she has no memory of things at all, no short-term memory’; ‘I can’t talk about [an event] being tomorrow, because [she would interpret it as] ‘we are going now’. Associated with these changes, caregivers mentioned losses in PWD’s ability to organize, plan or initiate an activity, or make decisions: ‘When we go to a restaurant, she just orders what I’m having instead of making her own decision.’ (FG1, P2) Consequently, PWD pursued fewer leisure activities on their own: ‘She used to do things on her own, she would play bridge, play golf with her friends. She doesn’t do any of that anymore.’ (FG2, P2)

Recognizing changes in PWD’s leisure engagement

The above changes in PWD’s abilities led to changes in the activities that PWD could pursue. All caregivers perceived, based on their understanding of dementia, an overall decrease in their spouses’ leisure participation with disease progression. Some caregivers noted that activities requiring cognitive demands, such as memory, following instructions, and planning, were increasingly challenging for their spouses: ‘We weren’t going to movies and we weren’t going to the theatre […] She stopped watching television, she stopped reading, she liked to knit and she stopped knitting, all these sorts of things.’ (FG1, P2)

Caregivers further described changes in PWD’s participation in shared and mutually enjoyed activities. With disease progression, PWD became less likely to share activities with their spouses, especially activities involving cognitive demand, social interactions and engagement. One caregiver explained he and his wife no longer travelled which was once an important mutually enjoyed activity:

FG3, P3: We always participated in going on vacation, we did things together… Until recently, we liked to vacation together, we would go wherever. Last year when we went, after about two days she wanted to go home even though I am not sure she even knows where home is. She just wanted to go home, being where things are familiar.

Subtheme 1b: Caregivers recognizing changes in themselves

From being a spouse to being a caregiver

Caregiving is an integral component in many dyadic relationships (e.g. marital, parent-child). As one member in the dyad develops dementia, however, the relationship shifts to one that puts increasing demands on the caregiver (Fauth et al., 2012). Spousal caregivers described increased physical workload since becoming caregivers. They allocated more time to assist PWD in completing activities of daily living and became more responsible for managing household tasks like cleaning, bookkeeping and cooking. Increased time spent on tasks and caregiving duties left limited time for shared leisure activities:

FG2, P2: I’ve got a lot to do around the house so I try to make sure she’s comfortable doing something. She spends a lot of time in front of the TV and that will allow me to go away and do something […] if I don’t do stuff that has to be done then we’re in worse trouble.

As PWD pursued fewer leisure activities independently, many caregivers, assumed responsibility for facilitating activities and ensuring their spouse’s participation. One caregiver described a common experience: ‘My husband doesn’t ask, I have to push, I have to bring out activities and do things. Otherwise he won’t do anything. You have to guide him for everything.’ (FG2, P1) Conflicts may arise as caregivers may be uncertain how to modify previously enjoyed activities to meet their spouses’ current abilities, yet provide enough challenge: ‘I’ve run into the same kind of comment that “this is for kids you know” with puzzles and that. I say, you know, “Try this”, [wife responds] “well no. That’s a kids game” or something.’ (FG2, P2)

Negative emotions connected to changing experiences and roles. Changes in interactions between caregivers and PWD resulted in caregivers experiencing negative emotions. Caregivers recognized and acknowledged changes in their emotions, and this acknowledgement represents the important first step toward adapting to them.

Changes and reduction in activities once enjoyed with their spouse, like having pleasant and meaningful conversations, contributed to loss of companionship felt by caregivers. One caregiver described this loss:

FG3, P3: It’s very challenging to try to do things together, because she can’t follow any instructions, she can’t even discuss. To tell her you are doing something tomorrow, (for example) if you are going on a trip you (think it may be exciting to) talk about it, that’s part of the fun, forget it. […] I’ve lost (a companion).

Another caregiver echoed these sentiments:

FG3, P2: It’s very sad in many ways. For many years you always have conversations of one kind or another or you know you get the newspaper in the morning and have conversation over breakfast.

The sense of loss of a partner is often accompanied by feelings of guilt for not being a competent caregiver. Caregivers described that without meaningful, structured daily routines or activities such as day programs, their spouses were often bored and idle at home. Some caregivers said idle time led to increased agitation, and one caregiver stated his wife would engage in self-harm behaviour, such as skin scratching, when bored. These behaviours increased caregivers’ sense of guilt and of being an inadequate caregiver. Another caregiver discussed his guilt when perceiving he had fallen short of his self-imposed standards in maintaining the relationship and taking care of his spouse:

FG2, P2: She spends a lot of time in front of the TV […] and I feel bad about that. I don’t like to just stick her in front of a TV because she gets idle. I feel guilty that I’m just making sure she’s attended to while I do everything that’s required of me.

Caregivers further discussed that the few activities they still shared with their spouse were no longer experienced the same way. This was attributed to the need for caregivers to assume greater responsibility for initiating and organizing activities in addition to facilitating their spouses’ participation. The constant trial-and-error in identifying an appropriate activity and persistent encouragement exhausted caregivers and led to frustration, as stated: ‘Trying to keep your spouse occupied in something that they enjoy doing can be frustrating…’ (FG2, P2)

Theme 2: Making sense of the changes and conflicts

As seen in Theme 1, when equilibrium in the caregiver–PWD relationship was disturbed the corresponding actions could result in relational conflicts and negative emotions for caregivers. Theme 2 explores this phenomenon on a deeper level and focuses on one of five central ideas of SI that “the human being may be understood as a thinking being” (Charon, 2009, p. 31). As caregivers examined changes in PWD and themselves, they attempted to understand them: why is my spouse or why am I behaving differently in certain situations? How are these changes impacting my life and relationship with my spouse? The two subthemes focus on (1) reasons attributed to changes in PWD’s leisure needs or interests, and (2) understanding changes in caregivers’ own emotional state.

Subtheme 2a: Reasons attributed to changes in PWD’s leisure needs or interests

As stated in subtheme 1b, it may be challenging to understand why PWD are not interested in previously enjoyed activities, and caregivers wanted to understand this change. Dialogue between two caregivers demonstrated their attempts to rationalize why their spouses did not seem to enjoy being with family anymore:

FG3, P1: He’s always enjoyed family, [however since dementia onset], just the group of people there I guess was too much for him to comprehend….it was oh ‘I think I need to go to bed’, ‘I’m just tired’. I think it was more that he couldn’t participate. And he knew he couldn’t participate with the young ones or in conversation with his children, and I think that would bother him. He couldn’t find enough words to keep a conversation with them, so he would withdraw rather than try to sit there…

FG3, P2: it might have been the noise too

FG3, P1: the commotion too with little ones running about…

FG3, P2: I know that bothers [my spouse]

FG3, P1: yeah, he likes it quiet…

This dialogue demonstrates caregivers’ desire and ability to identify causes of change in their spouses.

Subtheme 2b: Understanding changes in caregivers’ own emotional state

One of the therapeutic goals of the CARERS Program is to help caregivers identify and manage negative emotions so they may effectively focus on finding solutions to caregiving challenges. As described in subtheme 1b, the majority of caregivers grieved the loss of a leisure companion, as they abandoned many mutually enjoyed pastimes with progression of their spouses’ dementia. One caregiver lamented the grief was real and unavoidable and she acknowledged that social, cognitive and physical changes in her spouse were permanent. Ultimately, she seemed ready to leave the past behind: ‘We used to play badminton, go swimming, those were the programs we would do. In summer it was cottage life. But over time it got too difficult. So those were happy times.’ (FG3, P2)

Changes in PWD’s functional and cognitive abilities and interests may not follow a predictable progression and caregivers recognized they lacked skills and knowledge in identifying which leisure activities their spouses could still participate in. Many caregivers had difficulty and became frustrated when they attempted to draw upon previous experience and knowledge of their spouses’ interests to find activities. They realized they were no longer certain of their spouses’ activity preferences: ‘I’m pulling out all the old tapes asking him “why don’t you listen to this music?” He made all of those, he loved them. Maybe you have to do it for him, I don’t know.’ (FG3, P1) One caregiver discovered PWD may be engaged by past hobbies when reintroduced to them in a form matching their current capacities:

FG3, P1: One of the things I did last year which really makes me smile, and I’m pretty happy about, we did get a city bench, that’s going to be our place to go. It’s at a park, and it’s across from the airport runway, and [her husband] was a pilot. So you can sit there and you can watch the planes take off and land […] it’s pretty neat.

Theme 3: Embracing changes and forging ahead

The last of the three basic premises of SI states “meanings are handled in, and modified through, an interpretative process used by the person in dealing with things he/she encounters” (Blumer, 1969, p. 2). Human action is the result of an individual’s interpretation of events transpiring in different situations and then formation of plans of action in light of those events. After caregivers have opportunities to identify and interpret changes, they transform those meanings into actions as they attempt to re-define the environment or situation and move on.

Subtheme 3a: Redefining leisure in the context of dementia

As caregivers assessed situations, they realized much is beyond their control. Consequently, they learned to modify their own perceptions and expectations. They started to redefine what is needed for enjoyable and successful interactions with their spouses. This “recreated” space of interaction allowed caregivers to be creative and flexible. Caregivers were able to adapt leisure activities to suit PWD’s abilities. For example, by maximizing PWD’s remaining abilities, one caregiver reported she was able to share leisure moments with him: ‘He still likes poetry read to him. He can’t deal with a novel but short stories and poetry he likes.’ (FG2, P1)

Leisure time can also be an opportunity for PWD to express their “personhood”, re-establishing a sense of identity. Despite compromised cognitive functions, emotional and relational needs and capacities in PWD largely remain intact (Dupuis et al., 2012; Kitwood & Bredin, 1992). When caregivers attempted to facilitate “purposeful” leisure activities that allowed PWD to connect with others, caregivers believed that PWD felt engaged and involved. One caregiver described his wife’s pleasure doing crafts and bringing finished products to her nephews and nieces: ‘She loves to go over and see them and bring them little gifts. This will never disappear. The desire to give them something, to be an aunt to them, it’s quite amazing.’ (FG 2, P2)

Subtheme 3b: A meaningful support system

Caregiving can be lonely as caregivers often sacrifice other relationships to focus on their spouses. Sustainable caregiving depends on creating trusting and supportive partnerships. Caregivers in the study reflected on what supports would be useful in the context of leisure participation.

Importance of collaborative relationships/partnerships with health professionals

All caregivers expressed desire for feedback at regular intervals from the facilitator of the arts-based group at Reitman Centre (e.g. at mid-term and program completion) and to utilize the information to engage their spouse in activities at home. Caregivers felt they would benefit from a collaborative relationship with the group facilitator to address their family’s specific needs and preferences. Caregivers noted that dementia often prevented their spouses from recalling activities they participated in and enjoyed during group sessions. This highlighted the need for written communication from the group facilitator, which could be used immediately or referred to later. One caregiver commented:

FG2, P2: We are coming off of our [support] group and your mind isn’t on your spouse, it’s on all the things you’ve learned. And [group facilitator] would say they did this and that today, and you know I would hear it, but I wouldn’t listen and to have something separate that you could look at later would be far more valuable I think, to sink in.

Information needs of caregivers

Caregivers described the type of helpful information those working with their spouse could provide and how this information would best be shared. Caregivers said they would appreciate information to address barriers to their spouses’ participation in individual and shared leisure activities and information regarding their spouses’ activity preferences, including new interests uncovered in the arts-based group. Caregivers stated they would like recommendations on ways to modify activities for spouses’ changing functional and cognitive abilities, to capitalize on their strengths and interests. One caregiver stated: ‘I would like to know what [my wife] liked, but also what she was offered but didn’t have a particular affinity for. Maybe three months ago she would have enjoyed puzzles, but now puzzles are too complicated, and what she likes now may change in two or three months further on.’ (FG2, P2) Another caregiver expressed similar thoughts: ‘If there was something new that [my wife] really enjoyed and if I could meet with someone to show me. That would help me.’ (FG3, P3)

In addition, caregivers stated they would like to receive practical advice and strategies on setting up activities at home, including a list of materials required and where to purchase them, how to introduce activities to their spouses to spark interest and how to arrange or modify the environment to facilitate participation.

Seek support and learn from other caregivers

Caregivers value support from fellow caregivers, involving sharing, learning and mutual support. Caregivers discussed practical leisure tips learned from peers.

FG2, P1: I met a woman over Christmas break and she told me that music was one of the last faculties to disappear in PWD […] she suggested to put on music to calm their nerves, especially music that they like or know. So I thought, okay, this is coming from a woman with experience, so you know it’s something to remember!

Discussion

In the current study, caregivers with spouses with dementia had an opportunity to discuss their spouses’ leisure participation and reflect on how mutually shared leisure activities may be optimally supported at home. The overarching theme, “caregivers undertake iterative changes in leisure activities as they strive to create enjoyable moments with their loved ones” arose from analysis of focus group data using SI and associated SOC theory as guiding frameworks. SI “focuses on human life as a moving process in which participants are defining and interpreting each other’s acts and behaviours as they interact” (Jacob, 1998, p. 22). Through social interactions and constant interpretations, meanings are derived. Participants “transform meanings in light of the situation” in which they were placed and then decide the direction for their actions. In the present study, participants in this SI model were caregivers and PWD. Adopting this model in the analysis revealed how caregivers evolved as they tried to engage in leisure activities with their spouses, a task made more difficult as progression of the disease impaired PWD’s ability to do activities as before. Caregivers related to their spouses in a changed way, with feelings of guilt, frustration, and grief present making engagement in mutual activities more challenging.

SOC theory (Baltes & Baltes, 1990) purports that optimal function can be maintained during aging if individuals accommodate for psychological, cognitive and behavioural changes by minimizing losses and maximizing gains. Selection of activities requires redefining individual goals as one ages. Dementia progresses as aging occurs, and PWD or their caregivers may make necessary adaptations to allow optimization in leisure activities. Examples of this adaptation are the former pilot who now spends time with his wife watching planes, or the woman who still brings gifts for her nephews and nieces so she can continue to be an engaged aunt in a way that fits her current abilities. Phinney et al. (2007) point out that it is often society and institutions that place barriers to continuing participation in activities for PWD, and that familiarity with the physical environment may promote sustained participation in lifelong leisure activities.

Caregivers observed PWD participated in both fewer mutually shared and individual leisure activities since dementia onset. Decreased participation in everyday activities, including leisure activities, has been previously documented in PWD (Gauthier, Gelinas, & Gauthier, 1997; Lee et al., 2006; Miller & Butin, 2001; Vikstrom et al., 2008); however, the majority of this work focused on PWD’s decreased participation in self-care and household tasks. The exception is Miller and Butin’s work, which focused on self-care and joint leisure activities. The present study confirmed PWD’s participation in everyday tasks decreased with disease progression and extended previous research to further describe decreased participation in leisure activities and adaptations caregivers make to support the continued engagement of PWD in this valuable part of life. Miller and Butin (2001) did not examine experiences of spousal caregivers of PWD extensively or the quality of relationships between caregivers and PWD, both of which were addressed in the present study.

Another change caregivers observed with disease progression is that PWD became more likely to engage in activities requiring less verbal communication, cognitive demand, and social engagement. Caregivers hypothesized that their spouses consciously withdrew from social activities due to decreased ability to follow conversations and handle multiple cognitive demands. This is consistent with previous research (Vikstrom et al., 2008) that found PWD withdrew from social activities when unable to fulfill previous roles. Tsunaka and Chung (2012) found similar results in declining social relationships attributing these changes to PWD’s declining language and communication skills and to challenging behaviours that complicate social engagement. This occurs despite PWD’s preferences for activities pursued historically (Phinney et al., 2007). Adherents of SOC theory would take the approach that PWD may be conserving their energy to direct it towards specific, more achievable and valued goals, as the energy available diminishes.

Caregivers were impacted in many ways by their spouses’ decreased ability to participate in social activities. Staying home with their spouse and forgoing group events is an iterative adaptation in spending time with PWD, which further contributes to caregivers’ experiences of loneliness, isolation and loss, particularly of companionship. Concurrently, the nature of relationships between caregivers and PWD shifted to an increased focus on caregiving tasks and less on previous leisure activities. Caregivers described how their first priority was to complete household tasks and basic self-care and medical needs of PWD, with leisure activities possible only after these activities were done. Consistent with past findings (Vikstrom et al., 2008; Voekl, 1998), caregivers expressed task overload due to high household and caregiving demands. Changes in the relationship may lead to other negative emotions in caregivers like frustration with PWD’s lack of initiation of both independently and shared leisure pursuits. The loss of initiative observed in PWD has been well documented (Cook, Fay, & Rockwood, 2008; Gauthier et al., 1997), and a decline in activity participation is one of the first symptoms of dementia (Gauthier et al., 1997). Decreased initiation is a feature of apathy, one of the most common dementia symptoms, characterized by decreased interest and motivation, blunted affect and difficulty performing goal-directed behaviours (Marin, 1990). Loss of initiation, interest and enjoyment may also indicate the presence of depression (Davidson, 2011), which has been documented in up to 86% of PWD and further contributes to loss of function (Meyers, 1999). Apathy and depression may account for a portion of what caregivers in this study reported. Caregivers’ frustration and lack of understanding of these features of dementia highlight a need for healthcare providers to give caregivers information about apathy and depression and their possible effects on their spouses’ engagement in activities. Caregivers who are more successful in sharing enjoyable and meaningful activities with their spouse may mitigate these experiences and be better able to view their role more positively and, thereby, strengthen their relationship, consistent with the SI perspective (Blumer, 1969).

After reflecting on and evaluating changes, caregivers continued to express a strong desire to increase engagement in meaningful leisure activities with their spouses through adaptation and redefinition of leisure and recreation of a flexible space for leisure participation to occur. Caregivers want to assist their spouse in expressing their evolving sense of self, the social, expressive, imaginative and even unconscious dimensions of being human (Crisp, 1999). Arts-based activities may provide a means to enhance PWD’s sense of belonging and meaningful connection to others. This is consistent with a key theme identified by PWD, family members, and professionals in Dupuis et al.’s (2012) participatory action research, which highlighted the importance of leisure in providing a space for PWD to be with others and experience social life. Leisure activities were also found to be valued opportunities fostering connection and community with others in the present study.

Lastly, this study confirmed previous findings that caregivers desired more assistance to maximize leisure and activity participation (Buettner & Languish, 2001; Carbonneau, Caron, & Desrosiers, 2011; Miller & Butin, 2000). This study went a step further in suggesting that healthcare providers working with PWD could act as a resource to provide caregivers with specific, tailored strategies to overcome identified barriers to activity participation at home. Consistent with SOC, activities used to engage PWD and their caregivers in leisure changed throughout the course of the person’s illness. Leisure, connection and new meanings can continue to be found in activities previously enjoyed with adaption to limitations imposed by dementia at any stage.

Caregivers need assistance re-attributing meanings however it must be noted that healthcare providers are not ‘experts’ in PWD’s needs. Research by Dupuis and Gillies (2014) and Dupuis et al. (2012) emphasizes that a participatory approach including PWD in dialogue about leisure is necessary. PWD are typically excluded from this dialogue as they are thought incapable of fully communicating their experiences, needs and wants (Dupuis & Gillies, 2014). If healthcare professionals only consider caregivers’ views, they further marginalize PWD. PWD, caregivers, and healthcare professionals must share in discourse regarding the most effective means to support leisure activity. This study has not directly included PWD in focus groups but further research including PWD in data collection is required.

Clinical implications

The current study examined topics related to specific practical information caregivers wanted from healthcare providers to increase spouses’ activity participation, and the findings have several important implications for healthcare providers and caregivers. Healthcare providers should be aware of feelings of loss experienced by caregivers and how enjoyable shared activities may enhance the quality of the caregiving relationship.

Participants in this study offered several suggestions to address identified needs for increased support for leisure engagement. Caregivers stated they would like suggestions regarding selection and modification of enjoyable and meaningful activities to optimize PWD’s participation. Caregivers also wanted healthcare providers to provide further insight into what activities capitalize on PWD’s strengths and consider past interests and current functional and cognitive abilities.

Healthcare providers may also be able to better assist caregivers in leisure by sharing specific strategies effective in clinical settings to increase PWD’s participation and gain and maintain their interest, as well as practical advice on setting up activities at home. Healthcare providers should provide this information to caregivers in written form at regular intervals and collaborate with individual caregivers and PWD to address their family’s unique leisure needs and preferences. Healthcare professionals should consider learning styles of caregivers, and integrate principles of adult education (Kolb, 1984) into the provision of information. An example is inviting caregivers to observe or assist professionals running activities with PWD. By supporting PWD’s participation in meaningful and enjoyable activities that take into consideration their interests and abilities, professionals are following guidelines for comprehensive activity-based care of the Alzheimer’s Association (2012).

Findings from this study further support the need for broader community and systems level change to provide increased opportunities for shared activities for PWD and caregivers. Healthcare providers should consider alternative methods to facilitate meaningful leisure experiences for PWD and caregivers including providing training to help caregivers implement ideas for leisure engagement. Another suggestion is for healthcare providers to offer outreach programs including community visits to caregivers and PWD at home. Research by Graff et al. (2006) evaluated effectiveness of community-based occupational therapy interventions which apply principles of SOC to help PWD engage in self-identified meaningful activities. After teaching PWD optimization and compensation strategies to maximize personal and environmental resources, researchers demonstrated improved daily functioning of PWD in selected meaningful activities and increased sense of competence of caregivers at both six and twelve week follow-up. Home visits may present a viable option to maximize leisure engagement by PWD and caregivers.

There are many community day programs for PWD, commonly for caregiver respite and to engage PWD. There is a need for more community-based programs, such as “Meet Me at the MoMA”, for both PWD and caregivers to maintain a connection with each other and the larger community. Preliminary research on “Meet Me at the MoMA” found a statistically significant increase in mood for PWD and caregivers after the program (Epstein & Mittelman, 2008). Community-based programs present a promising avenue for provision of leisure experiences for PWD and caregivers.

Limitations

This study should be recognized as preliminary and limitations acknowledged when assessing the relevance of ﬁndings. The sample population consisted of spousal caregivers of PWD with mild to moderate dementia from one caregiver support program, which limits generalizability of the findings. The sample size was smaller than similar published studies, which range from 14 (Tsunaka & Chung, 2012) to 26 (Vikstrom et al., 2008). The sample size resulted from a relatively shorter recruitment period and challenges in recruiting from a population with high caregiving demands. Despite time constraints and reported difficulties in achieving data saturation in qualitative descriptive research (Milne & Oberle, 2005), there is evidence data saturation was achieved as descriptions provided in later focus groups were congruent with those reported earlier. Also, the small sample size may be compensated for by the use of qualitative descriptive methodology. A strength of this methodology is that participants’ language is closely adhered to and preserved in analysis increasing the likelihood of the interpretation being truer to participants’ feelings.

Conclusions and future directions

This exploratory research highlights changes caregivers observe during PWD’s activity participation with disease progression and the adaptations made to allow for PWD’s continued engagement in meaningful leisure activities. The supports caregivers require to increase their spouses’ activity participation were outlined, providing valuable clinical insights for healthcare providers working with this population. Caregivers want to continue enjoyable and meaningful leisure activities with their spouses. More support is needed in this area at both the individual and community level and the findings should be considered when developing caregiver support services and community programs to better meet the needs of caregivers and PWD. The results can also inform future research, which could include larger and more diverse samples of caregivers, like adult child caregivers, caregivers of PWD in institutions and caregivers from diverse programs, cultural groups or geographic locations. The perspectives of PWD should also be included, as Dupuis et al. (2012) clearly demonstrated their participation is possible when creative qualitative methods are used.

Footnotes

Acknowledgements

The authors would like to thank the participants for their generous contributions to this study. We wish to thank the Department of Occupational Therapy at the University of Toronto for their support. We wish to also thank Laura Jane Nelles for editing contributions. Furthermore, we are grateful for the support of the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer's Support and Training at Mount Sinai Hospital, Toronto.

Declaration of Conflicting Interests

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Michelle DiLauro is an Occupational Therapist working at Toronto Rehabilitation Institute.

Her clinical experience includes supporting older adults with dementia and their families to engage in meaningful daily activities, leisure, and active community living.

Amanda Pereira is an Occupational Therapist working in the community setting for VHA Home Healthcare on the Physical Medicine and Geriatric Health teams. She works with adults of all ages, primarily with older adults and their families, assisting individuals to live safely and independently in their home environment.

Jennifer Carr works in outpatient geriatric psychiatry at Mount Sinai Hospital in Toronto. She works clinically with older adults, but also does program development, and supervision of students and volunteers. She has been facilitating the Reitman Centre CARERS arts-based group program for family members with dementia for five years.

Mary Chiu received her PhD from the University of Toronto. Using qualitative approaches, her doctoral work explored older, community-dwelling Chinese immigrants’ psychosocial responses to falling. Her current research interests lie within geriatric psychiatry, specifically the social psychology of older adults and the concept of psychological resilience in the context of informal caregiving and dementia.

Virginia Wesson: completed a fellowship in geriatric psychiatry in the Department of Psychiatry, University of Toronto, following her residency. She sees patients of all ages but works primarily with geriatric patients and their families at The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training.

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