With dementia now affecting more than 50 million people worldwide, and approximately 7.7 million new cases diagnosed annually, addressing the long-term care needs of people living with dementia (PWD) has become a global challenge (Prince, Albanese, Guerchet, & Prina, 2014). Dementia not only effects the person who has the disease but also has a significant impact on the lives of informal caregivers who make enormous personal sacrifices to care for a spouse, parent, parent-in-law, sibling, friend etc. who is living with the disease. Coping with caring for a PWD is difficult because the progressive nature of dementia leads to ever-changing, unpredictable and incomprehensible changes in behaviour (Steeman, Dierckx de Casterlé Godderis, & Grypdonck, 2005). It is the behavioural problems associated with the progression of dementia that render caregiving a stressful and difficult task. It may be difficult for the caregiver to engage in social activities previously enjoyed due to the demands of caregiving (Van Bruggen, Gussekloo, Bode, et al., 2016).
As a consequence of the challenges family caregivers face on a daily basis, it is unsurprising that numerous studies report significant mental and physical consequences for the caregiver (for example Clark & Diamond, 2010; Ornstein & Gaugler, 2012). More specifically, family caregivers of PWD display higher rates of mental illness and lower subjective wellbeing when compared with the general population (O’Dwyer, Moyle, & van Wyk, 2013; Sörensen, Duberstein, Gill, & Pinquart, 2006). Burden, stress and distress are more than four times higher in family carers of PWD than the general population (Thommessen, Aarsland, & Braekhus, 2002).
Models of coping and quality of life for family caregivers
While several models of coping with the caregiver role have been proposed, perhaps the most widely accepted and used are Lazarus and Folkman’s (1984) Transactional Stress Theory (Crellin, Orrell, McDermott, & Charlesworth, 2014; Del-Pino-Casado, Frias-Fri´As-Osuna, Palomino-Moral, & Pancorbo-Hidalgo, 2011) and the Pearlin Stress Process Model (Pearlin, Mullan, Semple, & Skaff, 1990). Lazarus and Folkman proposed that caregivers who experience stress undergo a two-stage appraisal process before responding to the stressor. During the initial encounter of the stressor, the caregiver first appraises the perceived threat, and considers whether they have the required internal (physical and psychological abilities) and/or external (social, professional support) resources available to respond to the stressor, and therefore whether they are able to cope with the challenge presented to them (Figure 1, see ). Building on this model, Pearlin et al. (1990) add that there are five factors that impact caregivers’ ability to manage this process: 1) the background of the caregiver, the person being cared for, and the context of caregiving; 2) objective primary stressors (the care needed and demanded); 3) subjective primary stressors (role overload and relational deprivation); 4) secondary stressors (role strains and intrapsychic strains); and 5) mediators (social support and other coping strategies) (as cited in Del-Pino-Casado et al., 2011, p. 2312) (Figure 1, see ).
Figure 1. Theoretical Framework of Stress, Coping and Wellbeing for Family Caregivers, incorporating Pearlin’s Stress Process model (Pearlin et al., 1990) and the Transactional Model of Stress (Lazarus & Folkman, 1984).
Coping strategies for caregivers
Coping has been defined as “constantly changing cognitive and behavioural efforts to manage specific external and/or internal demands that were appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, 1984, p. 141). Kramer and Vitaliano’s (1994) review of coping frameworks for caregivers of PWD suggested that the most commonly adopted adaptive approaches to coping were problem focused/behavioural approach coping (Figure 1, see [3a]) and emotion-focused/cognitive approach coping (Figure 1, see [3b]) (Del-Pino-Casado et al., 2011; Lazarus & Folkman,1984). These have been described as:
- problem-focused/behavioural approaches: approaches where the caregiver actively tries to solve or modify the challenging problem (Lazarus & Folkman, 1984; Moos et al. 1990).
- emotion-focused approaches/cognitive approaches: coping strategies utilised to manage the emotional response to the stressor (Lazarus & Folkman, 1984; Moos et al. 1990).
When utilizing these problem-focused/behavioural approaches to coping, family caregivers may draw on their own resources, or caregivers may access external support services to ease their burden. Del-Pino-Casado et al.’s (2011) review of coping strategies, concluded that people cope with the caregiving role by:
1) developing skills and strategies to manage the care of PWD (Figure 1, see [4a])
2) identifying, developing, and routinely engaging in activities that support their own wellbeing (Figure 1, see [4b])
3) seeking professional assistance and/or assistance from their own social support network (Figure 1, see [4c])
4) acquiring knowledge about and having expectations for the disease progression (Figure 1, see [4d])
While emotion-focused/cognitive approaches to coping have been viewed as relating to negative outcomes (e.g. Papastavrou, Tsangari, & Karayiannis, 2011), more recent research suggests that they are not as maladaptive as initially suggested (Khalaila & Cohen, 2016). Cognitive reframing (Figure 1, see [4e]) is one strategy that can assist carers to emotionally cope with the challenges they face by encouraging carers to have a shift in thinking (Figueiredo, Gabriel, Jacome, & Marques, 2014). More specifically, this involves guiding the carer to identify maladaptive, self-defeating or distressing cognitions about the PWD’s behaviour and their own competency as a caregiver, and reframing these into more constructive and positive thoughts (Vernooij-Dassen, Draskovic, McCleery, & Downs, 2011). A Cochrane Review (Vernooij-Dassen et al., 2011) exploring the impact of cognitive reframing on family carers of PWD found that it was effective in reducing anxiety and subjective stress but not sufficiently effective to be used as the sole coping approach.
Mastery (Figure 1, see [4f]), another emotion-focused approach relevant to caregivers of PWD (Pearlin et al, 1990), is generally understood as the “sense of being in control of forces impacting one’s life” (Khalaila & Cohen, 2016, p.909); an internal resource that is important in mediating the negative effects of caregiving (Pearlin et al., 1990). Cairney and Krause (2008) suggest that increased stress impacts people’s capacity to solve problems, to utilize pre-existing reasoning skills, and leaves them feeling overwhelmed and helpless. These stressors in turn, reduce family carers of PWD’s sense of mastery and thereby perpetuate the cycle of stress (Mausbach, Roepke, Chattillion et al., 2012). Therefore, any approach that enhances a sense of mastery and being in control, may directly impact carers’ coping capacities.
A sense of personal identity (Figure 1, see [4g]) is integral to sustaining health and wellbeing and is often challenged during major life changes, including the assumption of a carer role (Burke, 2005). Through changes in roles and responsibilities, carers are called on to relinquish other roles deemed not as urgent which may impact their sense of who they are. They may experience internal conflict which threatens their sense of self-continuity; the frame through which they problem-solve and make decisions about their lives (Berzonsky, Cieciuch, Duriez, & Soenens, 2011). In a systematic review, Eifert, Adams, Dudley, and Perko (2015) found several role-related issues emerge as people assume a caregiver role. Carers reported experiencing role engulfment and a sense of losing their sense of self. They struggle with accepting what they had to give up as a carer; “the activities that once defined” (p.363) their sense of self. They also reported a strong desire to maintain the pre-existing relationship and life they had shared with the care-recipient before needing to take on this role. Furthermore, studies reviewed reported that carers talked of a loss of shared identity, particularly in spousal carer relationships where their role within the relationship had changed; for example, moving from a wife and lover to a mother or constant provider. Given these struggles with carer identity, any intervention that allows for caregivers to explore caregiver identity, while also allowing carers to reconnect with other aspects of the self, is likely to lead to a healthy sense of self.
Rationale for therapeutic songwriting
Therapeutic songwriting, a theoretically grounded (Baker, 2015a) and widely applicable therapeutic method of practice (Baker, Wigram, Stott, & McFerran, 2008, 2009), is emerging as a creative and uniquely beneficial alternative to counseling approaches to address personal issues (for example, Burns, Robb, & Haase, 2009; O’Callaghan, 1997; O’Callaghan, O’Brien, Magill, & Ballinger, 2009; Tamplin, Baker, Macdonald, Roddy, & Rickard, 2015). There are several reasons why songwriting may be an appropriate tool to assist people who are caregivers of PWD. Firstly, songwriting is a creative and versatile means to exploring and expressing emotions. Through identifying and naming key issues and expressing emotions in lyrics, songwriters can address varying needs for experiencing mastery, self-esteem, life review (Baker et al., 2008), as well as reappraise and reframe their perspectives on caregiving (Baker, 2015a; O’Brien, 2005). As carers project their emotions onto the lyrics and music, they may experience an emotional release and feeling of relief; a catharsis that can potentially be re-experienced each time the recorded song is played (Baker, 2015a). Indeed, the act of creating lyrics offers people an opportunity to voice their feelings and feel acknowledged and heard by others (O’Callaghan, 1997).
One of the advantages of songwriting over talking therapies (e.g. counseling or support groups) is that the creation of a song is not instantaneous; it takes time and therefore calls for those creating the song to have prolonged engagement with the issues being explored (Baker, 2015a). Through the shaping and refining of lyrics and music over a number of sessions, people may engage in “processing and reprocessing” of complex and sometimes painful issues (Baker, 2015a, p.19). By sitting with their feelings and experiences during this time, the lyric creation process creates possibilities for reappraising and reframing their perspectives and feelings towards themselves, the PWD, and their caregiving role.
From a cultural perspective, songs are generally accepted as vehicles for expressing poignant issues and therefore have value when used within a therapeutic frame. As completing a song demands focus, it is difficult for those creating the songs to steer the focus of therapeutic discussions towards a different issue as part of an avoidance strategy or defense mechanism). If a carer begins to digress, the therapist has the means to refocus the carer by redirecting him or her to the task of creating a song on the identified issue. Although this can also be achieved within a verbally-based therapy, redirection may be easier when the focus is on creating a song - it is task-oriented. During songwriting, the therapist can encourage the caregivers to keep returning to the focus of the song and not to avoid reviewing difficult emotions (Baker, 2015a).
Ambiguity and ambivalence are common feelings caregivers may experience as they come to terms with a situation that is challenging. Songs are a perfect medium for expressing complexity, ambivalence, and ambiguity. For example, the lyrics can portray one emotion while the music can portray a conflicting emotion (Baker, 2015b). Further, songs provide the perfect structure to tell a complex story – verses, a chorus, and a bridge. In verse 1, the problem is introduced, in verse 2, the lyrics explore specific issues of concern and through verse 3, the issues are further explored and/or a resolution to the problem is found. The chorus functions to express the feelings associated with the issue, and the bridge (if included) offers an alternative perspective or solution to reflect complexities.
Therapeutic songwriting has an established history of addressing issues of identity in the clinical and non-clinical contexts (Baker & MacDonald, 2017). Songs may be autobiographical in nature (Pennebaker, Mayne, & Francis, 1997) and can tell stories of people’s past, present, and anticipated future (Tamplin et al., 2015). The process offers the opportunity for people to reflect upon their journeys, step outside themselves and their contexts, and try to view themselves from a new angle and construct new meaning (Baker, 2015a, p.21). It also offers opportunities to address issues of identity by building micro-narratives, which ultimately contribute to the building of a macro-narrative (Tamplin et al., 2015). For carers of PWD, this is particularly important as they try to find meaning in, and incorporate the new caregiver role while also struggling to keep alive other domains of their identity (Quinn, Claire, & Woods, 2010).
Working on creating songs in the context of a group provides people with unique opportunities to engage in teamwork and share life’s experiences and challenges with others (Baker, 2013a; Grocke, Bloch & Castle, 2009; Schwantes, Wigram, McKinney, Lipscomb, & Richards, 2011). The group songwriting experience mimics other therapeutic group processes such as support groups but with the added advantage of having a clear focus and group goal – the creation of a song. The process fosters “trust, letting others in, and respecting others’ experiences and perspectives” (Baker, 2015a, p. 22). In Baker’s (2013a) study of group songwriting processes, she found that the safer, more intimate, and more trusting the group is, the more people were willing to open up authentically (p.141) and create a song that synthesizes the therapy process (Baker, 2013b).
One important strength of the songwriting process is that the artifact becomes a permanent record of the therapeutic songwriting process (Baker, 2013b). This is in contrast to verbal therapies, which happen in the moment and cannot be revisited unless audio recorded and played back. Therefore, the songwriting process and song product offers possibilities to revisit the issues discussed, thereby deepening people’s understanding of the issues affecting them, or assisting them to reframe and reappraise their context and response to the stressor. For carers, playing the song created can help bring clarity and deepen the connection with and meaning of the material expressed in the song.
Three models of songwriting
Three models of songwriting form the basis of the protocol: 1) insight-oriented songwriting, 2) narrative songwriting, and 3) psychoeducational songwriting. Insight-oriented songwriting (Baker, 2015a; Health & Lings, 2012; O’Callaghan, 1997) enables people to explore their feelings and behaviours within their current context, develop insight, and reconcile conflicting feelings about their situation. The process involves creating lyrics and music that direct people to “rethink, re-know, re-feel, or re-experience” (O’Callaghan 2005, p.125) thoughts and feelings and ultimately revise and reframe their thinking and feeling on issues that have been barriers to coping and wellbeing. In other words, the songwriting process allows experiences of physical and emotional stress associated with caregiving to be expressed and in doing so, increases carers’ insight into the source and impact of the stress.
Narrative songwriting (Baker, 2015a) is an approach that draws on the story-telling potential of songs to help people reconstruct their life narratives. Through the creation of songs that synthesise the narrative explorations of past, present, and future, people are able to construct meaning (Feinstein & Krippner, 2008) and address issues of changed roles and carer identity conflict. Within the narrative songwriting process, the therapist assists people to tell and retell their stories and in doing so, supports them through rephrasing their verbal contributions (to check for understanding), challenging them to view the issues from different perspectives, and helping them reframe negative thinking. Evidence suggests that through the repeated retelling of stories, there is a long-term integration of identity (Obodaru, 2012).
Psychoeducational songwriting (Baker, 2015a) originally developed by Silverman (2011; 2014), aims to educate the group of carers on a topic relevant to their stressor context. During the process, the therapist stimulates discussions about alternative ways of thinking and behaving, and then the group collaboratively co-constructs strategies to deal with their day-to-day stressors. The song created from the material raised in discussions becomes a record (and subsequently a future reminder) of what the carers can actively do to cope in life. For carers of PWD, psychoeducational approaches have been found to be effective in reducing symptoms of depression (Mittelman, Roth, Coon, & Haley, 2004; Pinquart & Sorensen, 2006), improving carer wellbeing, and reducing caregiver burden (Marriot, Donaldson, Tarruerm & Burns, 2000).
The songwriting protocol for family caregivers of people living with dementia
This protocol is designed to be implemented by a music therapist and involves the co-creation of three group composed songs, each of which have a specific focus on one aspect of caregiver wellbeing. The three songs would enable caregivers to:
1) express and reframe negative caregiving experiences and celebrate positive experiences by creating a song about the caregiver journey (insight-oriented songwriting, Figure 2, song 1)
2) explore their changed role and reconcile caregiver identity conflicts by creating a song about caregiver identity (Figure 2, song 2)
3) identify healthy coping strategies by creating a song that focuses on coping skills and strategies (Figure 3, song 3)
Figure 2. Emotion focused and cognitive approaches to coping (Song 1 and 2).
Figure 3. Problem focused and behavioural approaches to coping (Song 3).
During the creation of Song 1 (sessions 1-4), the carers have an opportunity to voice their struggles and celebrate their triumphs with other carers. Through this collaborative process, and supported by a trained music therapist, the carers create a song that contains lyrics that reflect their collective caregiving experiences. The carers are invited to express in words, some of the social, emotional, cognitive, and physical challenges they experience as a caregiver. For example, a carer may express how the constant repeated questioning by the PWD of “what day is it?” or “what is the time?” can test the carer’s tolerance. The therapist then validates this contribution by stimulating a broader dialogue with the group about what behaviours challenge their tolerance. When negative comments arise such as “I’m not
doing a good enough job because he get’s so angry with me”, the therapist can reflect this comment back to the carer by asking them to provide “evidence” of how she knows she is not doing a “good enough” job. This creates opportunities for the carer to develop insight into how this thinking is self-defeating and may have no factual basis. The therapist can respond and reframe thinking: “Yes he can get angry but this might be because he is no longer able to make sense of his world and may have no other way of expressing his confusion but to get angry. This might not have anything to do with what you have said or done.”
Once the group has voiced a range of struggles and challenges faced, the therapist seeks to balance these by facilitating a discussion about the rewarding aspects of caregiving. Sometimes the challenges of day-to-day caring become overwhelming for carers and they do not take time to reflect on the joys, accomplishments, and rewards associated with their roles. The therapist’s role here is to “summarise” carers’ extensive explanations by using key words or short phrases such as “unpredictable, daily grind, confusion”, and wherever possible, uses the carers’ own words verbatim.
The list of thoughts and feelings generated through the brainstorming activities are then read out and the therapist guides a brief group discussion to help carers identify the core message or feeling to be expressed in the song. The words or phrases relevant to the core message are then identified and shaped into lyrics. At this point, the therapist may guide a discussion about what genre or style their song should be. During sessions 2-4, the remainder of the song is created using the same process with a final chorus, verses, and sometimes a bridge being constructed and then recorded.
Song 2 (sessions 5-8) explores carer identity and the internal conflicts they may be experiencing about this role. Based on Fitts and Warren’s (1996) domains of the self-concept; academic self, social self, personal self, family self, physical self, and moral/spiritual self, the songwriting process encourages the group members to think of all aspects of themselves as they begin to describe how their role as a carer impacts their other life roles. Therefore, this songwriting protocol has a distinct emphasis on ensuring that the pre-carer identity is not lost or forgotten. Again, the music therapist’s role is to ensure carers explore their sense of self, and to help them reconcile any negative perspectives of their carer identity. As per song 1, the carers verbal contributions are shaped into song lyrics and music created to support the lyrics (see Baker, 2015a, p.146).
Song 3 (sessions 9-12) shifts the focus from emotion-focused approaches of coping, to problem-focused approaches, utilising psychoeducational models of songwriting. Beginning with a brainstorming session, the therapist facilitates a discussion to assist carers to identify a concrete “problem” or series of problems that if resolved or minimized (Silverman, 2014), would enhance caregiver coping and wellbeing. The therapist then asks the carers to offer potential solutions or strategies for coping with these stressors or problems. If no ideas arise, then the therapist can prompt reflections by offering possible coping strategies. These possibilities were derived from Folkman and Lazarus’ “Ways of Coping” questionnaire (1988):
1) confrontive coping (e.g. taking a risk, initiating an action considered unlikely to work)
2) distancing (viewing events as fate, ignoring the event, making light of the situation)
3) self-controlling (efforts to regulate feelings, not acting too hastily but thinking things through)
4) seeking social support (seeking information and professional help, talking to others about feelings)
5) accepting responsibility (apologising, making promises to do act differently, acknowledging one’s role)
6) escape-avoidance (wishful thinking, efforts to avoid problems, hoping for a miracle, fantasizing about things being different, avoiding people)
7) planful problem-solving (making a plan and following through, thinking through potential solutions to a problem)
8) positive reappraisal (rediscovering what is important in life, inspired to do something creative, changing something about myself)
9) other actions (exercise, mindfulness, visiting a friend, reading a book, listening to music, eating well, taking a vacation, respite, accepting help when others offer it)
Once a list of possible solutions has been generated, the pros and cons of these are then debated and the group eventually arrives with a list of commonly agreed strategies. These then become the focus of the song’s content. Once the song has been created, the song becomes a source of support and a reminder of their agreed strategies and coping tools.
Case illustration and discussion.
This case illustration is drawn from a larger study about the use of songwriting for people living with dementia and their family caregivers (Baker & Stretton-Smith, 2017; Baker & Yeates, 2017), which trialled the delivery of song 1 only. The study received ethical approval from The University of Melbourne, approval number 1545742.1 and all participants gave written informed consent to participate in the study. Each participant was assigned a pseudonym for the purposes of reporting.
The four carers of PWD described in this case illustration were recruited by the manager of Caladenia Dementia Care in Melbourne and comprised one male spousal carer (Byron), one female spousal carer (Nyssa), one female daughter carer (Natalie), and one male son carer (Sean). Two music therapists co-facilitated the songwriting process that explored the four carers’ experiences and feelings associated with caregiving. During session 1, the carers were encouraged to share their stories and express positive and negative feelings towards themselves, the care recipient, and their role. One therapist acted as scribe, noting down all the ideas on a whiteboard, and when necessary, summarising long descriptions of stories into key concepts. One carer (Natalie) was clearly quite stressed in her current situation and dominated much of the first half of the session. The therapists drew other carers into the discussion by directly inviting comments from them. Towards the end of the session, the lists of ideas on the whiteboard were read out, and the carers commented on how many of the ideas were negative. There was consensus that they wanted to ensure that positive experiences were also represented in the song. Through a process of democratic decision making, rephrasing, and reframing, the lyrics to what became the chorus were created: Lyric 1. “I see a beam of light shining through the haze” (referring to moments where the PWD had clarity); Lyric 2. “Sensing your true spirit in different ways” (referring to their experience that the core of the PWD remains despite cognitive decline); Lyric 3. “Sharing paths of love gives us reason for the now” (shared loved gives meaning to the tasks of caring); and Lyric 4. “Memories of our past give us strength to smile again” (refers to how memories of the past shared together fuels them during periods of stress).
During sessions 2 and 3, the three verses were composed and the whole structure of the song including melody and harmonic framework developed. The carers utilised metaphor and imagery to express their feelings, this being less confronting than more explicit and less abstract descriptions. Comments such as “not being on the same wavelength”, “daily grind”, “enjoying the present moment”, and “seeing the core of the person” were transformed into powerful lyrics. As they shaped their ideas into lyrics, they gained insight into their challenges, frustrations, and positive feelings. During this time, emotion focused/cognitive approaches (Figueiredo et al., 2014; Papastavrou et al., 2011) were utilised, with the therapist needing to ensure opportunities for expressing painful and difficult moments were balanced with positive ones. During session 3, carers talked about their frustrations around not having the skills to manage extreme behaviours. These feelings were reflected in verse 3 where the lyrics expressed frustration about how the roles held by the carer and PWD were changing and no training had been provided to deal with that.
Session 4 involved bringing the whole song together and creating a pre-chorus to link the verses with the chorus. The group were clear that they wanted to express how they witnessed short periods where the PWD was not “present” but somewhere else; disconnected from reality for just moments. The imagery of not being on the same wavelength was used here “Moments of absence, I wonder what you see, is it this wavelength that’s unknown to me”. The third time the pre-chorus appeared, the carers decided to modify the words to “Moments of absence, I wonder where you are, I feel so sad that you’ve drifted this far” to express their sadness of not being able to connect. The final version of the song lyrics is detailed in Figure 4.
The carers commented that the song enabled them to voice their opinions and create a song with “like-minded people” (Natalie, carer of her mother) and without being judged. Sean (carer of his mother) commented that it was different to the carer support groups where everyone goes around and has their opportunity to speak. This approach is more collaborative (Baker & Yeates, 2017).
Figure 4. Song Lyrics of True Spirit.
This songwriting process has drawn on insight-oriented approaches to activate emotion-focused and cognitive approaches to coping with the caregiver role. By encouraging carers to reconceptualise their problems, they transformed their views of problems as being insurmountable, to “uncover the positive aspects of a situation” and reframe them as an “opportunity for further growth” (Figueiredo et al., 2014, p. 217). Their whole mindset changed when they acknowledged and accepted that they are not to blame and that they can benefit from searching for and highlighting the positive aspects of their circumstances. Therefore, this intervention is helpful because it aims to enable carers to accept what cannot be changed and embrace opportunities for positive experiences.
Music therapists wanting to support caregivers of PWD can utilize one, two or all three of these songwriting protocols. Each one has its own aim and does not need to be used in conjunction with the other approaches. That said, there are some challenges that clinicians need to consider when implementing such a protocol. Firstly, some carers have experienced a stronger need than others to debrief about their experiences and have a tendency to dominate the session. In these cases, careful containment is needed. The clinician may need to be quite assertive in winding up lengthy personal accounts in order to keep the whole group moving along and connected. Here, the clinician needs to balance the need to give carers space to debrief and share but also ensure all carers have an opportunity to recount their own experiences.
Another consideration of the group songwriting process is the composition of the group. Spousal carers of PWD share quite difference experiences to those of adult children or other family carers. In the small number of groups who have participated in this protocol thus far, spouses tended to display more distress and greater difficulty reconciling role changes compared with adult children. More examination of this issue is needed before any conclusions can be drawn. However, it does beg the question as to whether homogenous or heterogeneous groups are of most benefit to family carers.
Finally, although carers of PWD have inherently different challenges to other types of carers (carers of people with mental illness, disabilities etc.), it is likely that some categories of carer challenges will be somewhat similar irrespective of the diagnosis of the care recipient. Therefore, this protocol may be relevant for other caregiving contexts. Further exploration of carer-focused music therapy protocols are needed to assist carers to manage their own health and wellbeing.
The songwriting protocol developed here is grounded in theories of stress, and coping emotion and problem focused coping strategies. In song 1, there is a particular emphasis on expressing negative feelings and reframing maladaptive thinking about caregiving experiences and abilities. This is to enable the carers to vent negative emotions and reframe their thinking to being more positive and less self-defeating. Song 2 focuses specifically on exploring the identity as a carer to ensure carers feel comfortable in their role and are not harboring resentment and ill-feelings about their role as a carer. Song 3 focuses on identifying healthy coping strategies that will enable the carers to cope during periods where their coping capacities are tested and there is a risk they may not cope with demands expected of them. This theory-informed protocol outlines the creative and therapeutic processes involved in creating a song with a focus on self-expression and insight, identity, and focused coping strategies that may help carers of PWD to transition into and manage the caregiver role. Further research is recommended to test the effectiveness of this protocol on wellbeing outcomes such as anxiety, depression, burden, coping, and resilience.
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