Role shifts and transformations: theater-based participatory action research with women caring for spouses with dementia

Abstract

Spouses caring for their partners with dementia face multifaceted challenges influenced by their marital life course. The current study employed theater-based participatory action research to explore and understand the lived experiences of women caring for spouses with dementia. Over 10 sessions, seven caregiver-women engaged in theatrical methods to explore the personal, familial, and social transformations they were facing. Individual guided recall interviews were conducted while reviewing segments from the videotaped sessions. The data which included video recordings of the sessions and post-interviews were analyzed using an inductive reflexive thematic approach integrated with the Six-Keys model for analyzing the dramatic scenes. Three main themes emerged from the analysis: (a) redefining roles within the couple’s relationship, (b) redefining roles within the close environment, and (c) redefining roles in relation to state health care institutions and authority figures. The discussion centers on the three lived continua that captured the findings: (a) integration versus splitting; (b) loneliness versus shared experiences, and (c) suppression versus activism. It is shown how the theatrical methods enabled the caregiver-women to explore their life-course experiences and their changing roles and rehearse new strategies for coping and communicating.

Dementia significantly affects the quality of life of both the persons with dementia and the family caring for them (Rahman & Howard, 2018). Although the burden can be shared by family members, spouses encounter specific, heightened challenges (Baharudin et al., 2019). These challenges are primarily associated with the behavioral and psychological symptoms of dementia, such as anxiety, mood changes, delusions, irritability, sleep disorders, disinhibition, aberrant motor behavior, and aggressiveness (Cerejeira et al., 2012). These symptoms may at times veer toward violence (Band-Winterstein & Avieli, 2019) or instances of hypersexuality (Harel et al., 2022). In addition, older women caring for men with dementia face multiple marginalizations from gendered ageism—the social constructions of both ageism and sexism, and their societal roles as partners of men with dementia (Krekula et al., 2018). This intersectional perspective suggests that older women in these caregiving roles are particularly vulnerable and be at a higher risk of mental health challenges (Band-Winterstein et al., 2022; Crockett et al., 2018). The onset of dementia leads to significant changes in couplehood dynamics (Evans & Lee, 2014) as reflected in dyadic interactions and relationship quality, diminishing reciprocity, exchanges, and sexual intimacy. This can lead to feelings of detachment and loneliness (Pozzebon et al., 2016). As caregivers, spouses need to adapt to the multiple demands of caregiving while experiencing these losses in their relationship as a couple (O’Shaughnessy et al., 2010).

A phenomenological-feminist study that explored experiences of women caring for spouses with Alzheimer’s disease also reported a similar sense of loss (Paun, 2003). The women described a deterioration in their marital relationship, diminished social engagement, and reduced autonomy. They assumed new roles and identities to compensate for the fact that their spouses with dementia could no longer fulfill their former roles (Paun, 2003). In a related study, caregiving women reported a decline in emotional and sexual closeness with their spouses that paralleled their increasingly parental caregiving role (Hayes et al., 2009). Research conducted within the life-course perspective indicates that the experience of living together with a partner with dementia is shaped by the couple’s shared history and lifelong relationship (Harel et al., 2022).

Dementia-induced changes in couples' relationships also affect broader familial and social dynamics (Martínez-Santos et al., 2021; Zhu et al., 2024). Shifts in marital roles often cause confusion and resistance among family and friends, which reduce social engagement and increase isolation (Sherman & Boss, 2007). Women caring for spouses with dementia face challenges such as unmet expectations of support and negative interactions. Caregivers faced unfulfilled offers of help, inadequate social interactions, disparaging comments, disagreements on patient care, and unresolved family conflicts (Neufeld & Harrison, 2003).

These experiences of changes within the couple’s relationship and the overall family system underscore the need for support for women caring for spouses with dementia. A grasp of these experiences can enhance the care and quality of life for both the caregivers and their loved ones (Gaugler et al., 2008). To better understand these issues and explore ways to achieve potential transformations in their lives, this study implemented theater as a methodological tool, given its ability to facilitate expression, agency, and reflection.

Theater as space for challenging social constructions on dementia

Over the last 20 years, the body of research on dementia has stressed the importance of creative and artistic approaches in understanding the experiences of people with dementia, their families, and caregivers. Scholars such as Basting, Kontos, Gray, and Henderson contributed significantly to shifting traditional perceptions. The TimeSlips project, for example (Fritsch et al., 2009), introduced improvisational storytelling that encourages participants to create narratives based on images and prompts. This approach, which has been widely adopted in care settings, allows individuals to engage in meaningful creative processes regardless of cognitive decline (­Fritsch et al., 2009). The Penelope Project used theater as a collaborative tool in nursing homes, which engaged residents, caregivers, staff, and students in the cocreation of a play. This initiative fostered intergenerational relationships and shifted perceptions of long-term dementia care (Rose et al., 2016).

Theater-based methodologies for exploring dementia have also been used. Kontos and Naglie (2007), for example, transformed findings from an ethnographic study on personhood in Alzheimer’s disease into a dramatic production, which was performed in front of health practitioners and served as an educational tool to disseminate information about dementia care. Kontos et al. (2017) introduced the concept of embodied selfhood, which suggests that identity is not solely dependent on cognitive function but is also maintained through the body, movement, and relational interactions. Gray et al. (2020), in collaboration with Kontos, cocreated Cracked: New Light on Dementia, a research-informed play that challenged dominant narratives of dementia centered on loss and decline and highlighted relational caring, embodied selfhood, and the potential for meaningful connections despite cognitive changes. Theatrical techniques such as embodied storytelling, humor, and metaphor immersed the audiences in the lived experience of dementia and encouraged them to critically reflect on their assumptions (Dupuis et al., 2024; Gray, 2017; Gray et al., 2020; Kontos et al., 2024). Another 5-year initiative engaged people with dementia, caregivers, researchers, and artists through theater, shadow puppetry, and improvisation (Henderson et al., 2022). The project challenged negative narratives of dementia with stories of connection and presence, to reduce stigma in care settings and strengthening relational citizenship.

The present study builds upon this literature to explore the role of theater and participatory methods in shaping the experiences of individuals living with dementia. It views theater as a space for inquiry, connection, and meaning-making in understanding the experiences of women caring for spouses with dementia. By using a theater participatory approach, in which the caregiving women themselves are the primary performers of their own experiences, it expands the scope of participatory research in dementia studies, and positions the women as active agents, allowing them to shape and redefine their own narratives.

Theater participatory action research as a space to explore human experiences

Theater-based participatory action research (T-PAR) is a variant form of participatory action research that employs theatrical methods to foster inquiry and engagement (Kaptani & Yuval-Davis, 2008). Participatory action research is a self-­reflective inquiry where the researchers and participants engage in understanding and improving their lived situations (Kemmis et al., 2014). This approach harnesses experiential knowledge to approach problems arising from unequal and harmful social systems and to envision and implement alternatives. It engages those affected by these issues in leading and participating in systematic research to produce emancipatory social change and generate new knowledge (Cornish et al., 2023). T-PAR uniquely allows participants to express and embody their experiences through a theatrical collective process emphasizing both verbal and embodied representations. In T-PAR groups, dialogue and narrative exchanges during group sessions promote verbal representations. Embodied representations are conveyed through physical gestures, body positioning on stage, and the use of costumes and props (Kaptani & Yuval-Davis, 2008). Through theater, participants can explore muted issues in their lives and investigate desirable actions that may lead to personal and social changes, enhance communication strategies, and foster personal and social transformation. The theatrical process allows for the experimentation of new actions and behaviors (Chilton & Leavy, 2014; Kaptani et al., 2021).

Theater-based participatory action research incorporates two forms of improvisation: playback theater and forum theater (Erel et al., 2017). Improvisation is a spontaneous, unscripted theatrical process in which participants respond in real time to prompts, interactions, and unfolding scenarios (Levine, 2013). It allows for the open-ended exploration of memories, emotions, and personal experiences, thus offering a dynamic alternative to structured narrative approaches. In theater-based research, participants enact situations and uncover new dimensions of their stories through movement, dialogue, and interaction. One key strength of this approach lies in its spontaneity and unpredictability, where familiar moments take on new meanings as they emerge in real time, shaped by relational dynamics and spontaneous responses (Keisari et al., 2020; Levine, 2013). Because improvisation occurs within a group setting, it provides an opportunity to examine how life stories evolve in response to others (Sajnani, 2012). Participants may begin to see their own experiences differently as they engage with another person’s perspective or observe audience reactions (Erel et al., 2017).

In playback theater, actors improvise to spontaneously enact the participants' personal stories (Fox & Dauber, 1999). One participant, called the “teller,” shares a personal story, and the other group members then improvise a theatrical scene based on the narrative on the spot (Kowalsky et al., 2022). By witnessing the theatrical improvisation, the tellers gain new perspectives that breathe new life into their life stories (Salas, 1993). Playback theater creates a collective story by integrating individual experiences into a meaningful community narrative, thus strengthening connections among participants and fostering a shared sense of purpose (Salas, 1993).

In forum theater, the audience members are called “spect-actors” and are considered both observers and active participants. They can get up on stage, take the place of the protagonists, and try out alternative ways to respond to or cope with oppressive situations (Boal, 2005). Forum theater can lead to political and legal recommendations for action integrated into decision-making processes. It also fosters group dynamics using drama techniques to collectively address and transform stressful situations or structures including discrimination, exclusion, and social inequity (Wrentschur, 2021).

In the current study, the improvisational nature of the dramatic process allows participants to explore experiences in their couplehood and various roles throughout their life course. From a life-course perspective, personal experiences in older age are connected to life events, early development, relationships, and sociocultural contexts (Elder et al., 2003; Gilleard & Higgs, 2016). This study applied a life-course perspective that addressed both positive along with negative experiences and roles in the past, present, and future (Keisari, 2021; Keisari et al., 2022). Specifically, this study explored the experiences of older women caring for spouses with dementia from a life-course perspective, and whether and how T-PAR supported them to reflect on their experiences and to promote change.

Method

Participants

The group was composed of seven women, aged 72–79, who had been providing care at home for their spouses with dementia for 1–7 years. All reported having a positive and safe relationship with their spouses throughout their lives.

One woman was born in Israel, two were born in Morocco, and the rest immigrated to Israel from Bulgaria, India, Turkey, and Iran. These women, referred to in Israel as “Mizrahi” (born in North African or Middle Eastern countries, who immigrated to Israel during the 1950s and 1960s), came to Israel as children. All expressed an interest in taking part in a group based on theater and drama-based process.

Caregiving for a family member with dementia in Israel is deeply rooted in cultural and religious values that view caregiving as a moral and spiritual duty, particularly in Jewish and Muslim religious communities (Halevi Hochwald et al., 2022). Traditional families, such as the Mizrahi women in our study have strong social expectations for home-based care. This cultural framework shaped the caregivers' experiences, their sense of duty, resilience, and the challenges they faced in seeking external assistance.

The inclusion criteria for the study were as follows: (a) age 65 or older and living with a spouse diagnosed with dementia for at least 6 months before the study; (b) normal cognitive functioning (Mini-Mental State Examination) MMSE > 24 (Woodford & George, 2007), as reported by the day care center’s social worker; (c) sufficient fluency in Hebrew to participate in the group sessions; and (d) no diagnosed mental disorders based on self-report. All the participants' names have been changed to protect their confidentiality.

Procedure

The participants were recruited with the assistance of EMDA—the Alzheimer’s Association in Israel. The study took place at the adult day care center where the participants' spouses were attending. The women were invited to participate in a T-PAR group by the social workers. Women who expressed initial interest were contacted by the first author via telephone and later met individually for an introductory meeting.

The study covered 10 sessions, each lasting 1.5 hr, with six main stages (see online supplementary material, Appendix 1). All sessions were documented through video recordings to capture the participants' lived experiences. The sessions were facilitated by the first author, a certified drama therapist with an MA. She has directed community-based theater groups for over 20 years, but this was her first time working with a group of older women. She documented the group’s process in research notes, including her thoughts and feelings. As the daughter of an aging mother, the experiences of the research participants introduced her to personal issues that her mother is dealing with. Writing the research notes allowed her to increase her awareness and distinguish between her experiences and those of the participants. The other two authors are both experts in clinical gerontology and drama therapy, who have been working for over 20 years with women in older age. They served as supervisors for the first author of this study. We were all aware of the potential bias due to our personal and professional experience and discussed these issues to remain open to the participants' subjective experiences and to make sure multiple perspectives were expressed.

At the end of the process, the participants were interviewed individually. During the interviews, video segments (see online supplementary material, Appendix 2) were screened, including theatrical scenes performed in response to the participant’s own story, as well as scenes in which the participant acted in others' stories. The participant and the researcher (the first author) watched the video segments and reflected on them (Keisari et al., 2020). The interviews were recorded and transcribed. This study was approved by the Ethics Committee of the ­Faculty of Social Welfare and Health Sciences at the University of Haifa (#330/22). Given that this is a participatory action research (T-PAR) study, during the introductory interviews, participants were informed of their dual role as both research participants and cocreators and that they could shape the research process by selecting discussion topics, and determining the themes to be explored. They were made fully aware of their right to withdraw at any time from the study, without repercussions. To maintain ethical integrity, the research design prioritized accessibility, privacy, and emotional well-being. Recognizing the challenges participants faced in their caregiving role, logistical support was offered, including assistance with transportation and scheduling flexibility to accommodate their needs. Attendance was tracked to monitor participation levels and ensure ongoing engagement, but participation remained voluntary, allowing for fluctuations due to personal caregiving responsibilities. The anonymity of all participants was protected, and confidentiality was upheld in all recorded sessions and discussions. The participants were guaranteed that identifying information would not be shared with external entities. Since the study incorporated theatrical methods such as playback and forum theater, ethical considerations were further reinforced by ensuring a safe and supportive environment. Before each session, the participants were reminded of their autonomy in sharing personal narratives and were given the freedom to opt out of specific exercises if they felt uncomfortable. They were also encouraged to actively shape the creative process, thus reinforcing their role as knowledge producers rather than subjects of inquiry.

Data collection and analysis

The data consisted of the session videos, the video transcriptions, the first author’s notes written at the end of each session, and the transcripts of the individual interviews conducted with the participants at the end of the process.

The data were analyzed using an inductive reflexive thematic approach for the verbal data (Braun and Clarke, 2006), integrated with Pendzik’s Six-Keys Model in drama therapy (2003, 2008) for analyzing the session videos, the theatrical process, and the dramatic scenes.

This model allows researchers to analyze the dramatic work through six keys that examine:

(1) The passages, the participants' transition into the drama work: whether it was smooth or difficult, whether they entered roles easily or hesitated, and whether they returned to reality independently or required guidance; (2) The quality of the drama work, including the nature of the acting, engagement, spontaneity, attention, flow, and other theatrical features; (3) Roles and characters portrayed during the improvisations; (4) Plots, themes, and conflicts as the central content of the dramatic scenes; (5) Participants' responses to the dramatic work, reflected in the thoughts, emotions, and reflections shared during the postperformance sharing circle; and (6) Subtexts or the meta-reality of participants' experiences, as noted by the researcher (Kordova, 2023; Pendzik, 2003, 2008). The initial phase of the data coding was based on the six-key model, where the units were coded in terms of the quality of the drama work key, e.g., “empty stage,” “full stage,” “joy,” “role confusion,” “hesitation.” Coding units in the roles and characters key were: “The partner became like a child,” “the partner as a patient,” “the man he was,” “super woman,” “mother.” The second coding phase focused on the verbal content from the group discussions and the personal interviews. Examples of coding units for the verbal content were: “I’m not alone,” “shared experience,” “supportive relationship,” “exhaustion,” “getting to know the other’s perspectives.”

The analysis was conducted by the three researchers to maintain reflexivity. The first author, who facilitated the sessions and conducted the interviews, contributed an insider’s perspective on the data. The other two researchers had an outsider’s vantage point. Both perspectives shed light on the effects of the researchers' position in relation to the women’s experiences and the theatrical process (Berger, 2015). These team consultations during the analysis process helped uncover potential projections and identify content that might have been overlooked.

Findings

Three themes were generated from the data. The first theme involved the women’s new roles within the couple’s relationship. The second theme focused on redefining their roles within their immediate environment of family and friends. The third theme addressed their roles in relation to state health care institutions and authority figures.

Redefining roles within the couple’s relationship

This theme related to the continuous adaptations that caregiver women needed to make to their evolving relational roles as a result of their spouse’s declining condition and the increasing demands of care.

During the sessions, the group discussed how dementia had shifted their intimate partnerships into caregiving relationships, which were often characterized by hierarchical dynamics. At the start, the participants expressed this shift through metaphors such as “he has become like a child,” reflecting the vulnerability of their spouses and the need to protect them. This quote captures the shift their relationships underwent from intimate and mutual partnerships into complex, hierarchical caregiving dynamics. As the women took on more responsibility for their spouses' care, this deprived them of the spouses' autonomy. The women struggled with the tension between providing necessary care and recognizing its impact on their spouses' sense of self. Theater, with its flexible and exploratory nature, provided a space where other facets of the spouse’s identity could be expressed. Rather than reinforcing a singular narrative of decline, the dramatic process allowed for the portrayal of roles across the life span that reflected competence, connection, and continuity within the relationship.

The selected scene focused on Hanna’s fear that her spouse would fall out of bed during the night that was keeping her awake:

Two actresses portrayed the couple: Ziva portrayed Hanna, while Ora took on the role of Jacob, Hanna’s spouse. Hanna selected a thin piece of fabric to symbolize her spouse’s blanket. The two actresses stood, each holding one end of the “blanket.” Although this evoked the image of someone lying in bed, their standing position emphasized the tension of the situation:

Ziva [in Hanna’s role] [in a soft voice]: Jacob, sleep. Everything is fine.

Hanna [from the spectator’s position]: Ziva, you should move him [Jacob] further towards the middle of the bed.

Ziva [in Hanna’s role]: One more centimeter, [pushing Jacob’s body to the center of the bed] a little more. I’m here … do you need to go to the bathroom?

In terms of the dramatic scene, Ziva spoke with Jacob in a pleasant voice, patiently explaining to him what he should do to avoid falling out of bed. Throughout the scene, there was a dynamic of distance and closeness between the couple. The wife tried to push her husband toward the center of the bed, but he continued rolling toward the edge. This scenario was repeated several times. In the unspoken subtext, the scene reflected Hanna’s Sisyphean experiences during the night. The audience observed the fears of the caregiving woman, who could not sleep out of worry.

In the forum theater technique, the facilitator invited the spectators on stage (a specific area in the room dedicated to the theatrical scenes) to replace the actresses in their roles and contribute their own experiences:

Sara [in Hanna’s role] [touching her husband’s shoulder, relaxing]: Don’t worry, be calm, everything will be taken care of … I’m always with you, watching over you. You can trust me.

This interaction portrayed the women as guides, protectors, and comforters, who embodied a caring role and highlighted their acceptance of the challenges posed by the dementia and the impact it had on their relationships. These dramatic portrayals underscored the women’s resourcefulness and adaptability, rather than defining their spouses through limitations or dependency.

In another scene, the facilitator asked the group to enact a situation in the couple’s relationship before the diagnosis. Following Hana’s directions, Ziva and Ora performed a scene representing a typical breakfast between the couple. Ziva, playing the role of Hannah, preparing breakfast while Ora, in the role of her spouse, approached her lovingly, offering to help. The mutual interaction in the dramatic scene was in stark contrast to the earlier scene where Hanna’s leading caregiving role contrasted with her spouse’s dependency. In the interview, Hanna watched the video recording and responded to the scenes by saying: “I did what I had to do [taking care of him], he is a good person.” Observing the past and present scenes strengthened Hanna’s sense of continuity in her relationship, which is based on mutual caring despite the onset of dementia. The dramatic scene further highlighted aspects of her spouse’s identity beyond his dementia by portraying him as a caring, loving, and devoted partner. This broader representation allowed for a multidimensional perspective of the self, demonstrating that his role in the relationship extended beyond his condition.

Redefining the women’s roles within the close environment

As the spouse of a person with dementia, these women also experienced changes in their relationships with friends and family. They reported navigating between preserving familiar patterns and modifying them to meet the ongoing evolution. In the fourth session, Mary shared her feelings of embarrassment about dementia, which led to social isolation. She said:

… Some friends don’t even know he’s sick, I haven’t told them. People think it’s contagious … and when you see others disconnecting, you disconnect as well …

[in the past] we entertained a lot, we really lived … it was a beautiful time.

The first scene performed on stage was Mary’s recollections of a trip abroad with her husband and another couple. Four participants created a hiking scene that captured the movement and activity on stage, created an atmosphere of freedom. The interactions showed friendship and closeness between the couples. In response to the scene, Mary said with a smile on her face: “We were happy there, you could see it on their [the actresses’] faces.”

Then the facilitator asked Mary to describe a contemporary experience that reflected her current relationship with her friends and could be reenacted on stage, but Mary replied: “There’s no relationship … I’m coping alone.” In response to Mary’s description, the group decided to create a scene with an empty stage, emphasizing the void in relationships in her life. For a few moments, they all silently observed the empty stage.

In this way, the dramatic work presented two contrasting realms from the past and the present; namely, social connectedness and loneliness. In the interview while watching the video of this scene Mary said: “I was comfortable because there are other women like me, and I’m not alone …” This quote highlights how the group’s exploration of the theme of loneliness in a theatrical scene created a shared experience by transforming this woman’s sense of isolation into one of conn­ectedness.

By externalizing her experiences through embodied action, the dramatic work allowed Mary to engage with her past and present realities from multiple perspectives. Moreover, it provided a space where aspects of her personal and relational identity, beyond her caregiving role, could be explored. The use of contrasting scenes deepened her understanding of loss while simultaneously creating a shared emotional reality within the group, transforming personal isolation into collective recognition and support.

As the conversation continued about their efforts to seek help from family and friends to care for their spouses, the participants began to talk about their relationships with their children. Leah said: “I don’t expect the children [to help], it’s a different generation …” Fanny remarked: “I don’t rely on the children,” and Mary commented: “… they are busy with their own lives.” Several women, including Mary, noted that although they updated their children on medical issues, they chose not to involve them in caregiving tasks, both to shield them and to preserve their role as mothers. “We are the gatekeepers!” Sara said.

In a staged living room scene, Mary discussed her spouse’s care needs with her daughter and son-in-law. The scene illustrated the tension between seeking support from family and maintaining traditional family roles. Characterized by minimal movement and the absence of props, the scene symbolized the children’s inaction and their exclusion from caregiving. This scene was based on the principles of forum theater, where the spectators take turns and change roles:

Fanny [in Mary’s role]: I am very sad that my friends have abandoned me.

Leah [in daughter’s role]: Mom, you should be happy that you have us, we are here. If you need anything, don’t hesitate.

Fanny [in Mary’s role]: I don’t want to burden you anymore … you are also busy … as long as I am able and capable, I don’t need [help].

Sara [replaces Leah in the daughter’s role, trying to convince Fanny in Mary’s role to get help]: Mom, this is a condition that can last for many years. You can’t take on all the chores, all the worries … We would like to make it easier for you, we are worried about you … you also need to have a life.

The facilitator [replaces Sara, who was playing the daughter, in a more assertive voice]: Mom, what do you think, that you’ll get a medal? … We also have the right to help, he is our father!

Ziva [in the son-in-law’s role] [gently]: You should take a break, it would do you good, give you the strength to continue, we don’t want you to collapse.

Leah [replace Fanny in Mary’s role, presenting a different stance]:

… over the years, I’ve been weakened by all this caregiving, and I feel that I need help. I would really like you to try and see what you can do to [help], to alleviate some of the burden for me. I would really appreciate that …

This scene captured the women’s ambivalence toward wanting help but also protecting the children while maintaining a maternal role. During the dramatic work, Mary explored new ways of relating, and the group practiced both requesting and offering support. This illustrates how theatrical inquiry invites experimentation with various and new possibilities for expanding everyday reality.

Redefining the role of women in relation to state health care institutions and authority figures

During the sessions, the women discussed their challenges when interacting with government agencies, physicians, and social workers, and examined their interactions as well as the steps needed to define their roles as spouses in these contexts.

In the second session, Leah came late because she had an appointment with a representative from the National Insurance Institute. She told the group that she had requested a larger home care stipend four times to cover needs related to her spouse’s progressive health decline and had been rejected three times before trying again. Leah said: “They tell me I can file a claim, and they will grant it. My husband’s medical condition is so complex that it justifies receiving help … I believe these institutions are meant to help.” This issue brought up hard feelings in the group. Fanny said: “It’s a terrible subject”. Mary said: “It affects us all” Leah said: “Depression, frustration, no one will help me.”

The group decided to stage a scene recreating the bureaucracy and the committee evaluation meeting. Three actresses were selected. Sara played Leah, Fanny played the telephone representative, and Ziva played the representative from the medical committee of the National Insurance Institute. Leah, in the director’s role, guided and controlled the scene:

Leah: Sara you’re going in hoping you will get the stipend, you’re submitting the form, you’re full of hope.

Leah [gives a piece of black fabric to Ziva, who plays the National Insurance medical committee]: You are evil. All your questions should mirror your suspicions … You should say that the claim is not justified …

Leah [to Fanny who plays the telephone representative]: You’re cold, indifferent, you ask, suspiciously “Oh, really? Doesn’t he walk?”

Sara [in Leah’s role performed a monologue in front of the group, with her hands outstretched in a gesture of helplessness. On the other side of the stage, the representative and the medical committee member turned toward each other, ignoring her]: They say that he does not meet the criteria … The third time, I applied … and amazingly, I was rejected again. Although he [my husband] is in bad shape. I felt disappointed, frustrated. I got nervous. Nobody cares about you …

Fanny [in the representative’s role] [suddenly stands up clasping and unclasping her hands to show she is focused on questioning]. She turns to Leah: Your husband, does he shower by himself? Does he get what he needs from the fridge by himself? Can he eat without help? Can he get dressed by himself? … When you are not at home what does he do alone? … Is there anyone there helping him? These are the things I want to know.

Ziva [in the medical committee’s role, the black fabric is draped over her like a judge’s robe in court]: Well, I looked at the form, and I see that there are a lot of things here, do you really need to be around him all the time? If that’s the case, then he needs to go to a retirement home that will take care of him. Is that what you want? … According to the medical data, I see your husband doesn’t meet the criteria for a paid caregiver.

Leah [from the spectator’s position]: The request is denied.

The dramatic scene reflected the women’s feelings of rejection and oppression by officials from the public health institutions who grant the stipends they believe they are entitled to. The scene also captured their discomfort, mistrust, and persistent frustration. Leah said afterward during the sharing circle that “Even the theatrical representation could not fully capture this situation.”

In the ninth session, the group created a stance-action manifesto (see online supplementary material, Appendix 3) calling on public health institutions to formally acknowledge spousal caregiver rights. They practiced for future interactions with these institutions, including responses to the real-life situations they often encountered during meetings with representatives. In one scene, Sara approached a welfare social worker with determination, where she firmly demanded solutions and assistance, unlike her initial portrayal of naivety and helplessness.

Mary, playing the social worker, and Sara, playing herself, stood face-to-face throughout the entire scene. Sara’s body posture manifested her strong and assertive presence:

Sara: … When he gets anxious, he collapses and falls. And I would really like some kind of help from you …

Mary [in the social worker’s role]: I can only register and submit your request.

Sara [assertively]: No! I need you to recommend it.

Mary [in the social worker’s role]: But that’s the procedure.

Sara: Procedures? We will break them!

As the scene progressed and Sara grew more confident, she insisted that the social worker address her case immediately, saying: “The bureaucracy is destroying us,” “Enough with the paperwork.” At the end of the scene, the social worker promised to deal with Sara’s case personally and even gave Sara her direct phone number.

During this session, the women practiced making demands to various entities. They requested specific caregiving coordinators from the National Insurance Board, appealed to the Ministry of Health to shorten waiting times for stipends for dementia patients, and urged EMDA, the Alzheimer Association, to set up more support groups. Mary suggested a mock television interview with the facilitator to discuss caregiving women’s experiences and needs. This idea reflected the group’s desire to raise awareness and expand their influence to create broader change.

When watching the video of these scenes during the interview, Leah said: “Even now, when I see this, it makes me angry all over again … Well, they [the women] knew how to act it, they’ve been through it themselves.” She doubted she could face the National Insurance medical committee again: “It was too traumatic.”

In her interview, Sara, who played Leah, said: “We all learned from Leah’s story.” This illustrates how theatrical work enabled one woman’s personal experiences to be shared collectively, with the support and testimonies of other group members. The dramatic reality provided the participants with a forum to voice their silenced experiences and to reveal their feelings of oppression. It also promoted the exploration of new solutions and possible stances when engaging with government agencies and institutions. Although Leah found the experience particularly difficult, her story allowed the group to express their collective struggles with rigid state agencies.

Discussion

This T-PAR explored the experiences of older women caring for spouses with dementia and how theatrical representations can promote change. Three themes emerged, describing the ongoing adaptations the women had to make to their relational roles in response to their spouses' condition, to shifts in relationships with family and friends, and to the demands of health care authorities. The discussion examines these findings in relation to the existing literature and the ways the theatrical work facilitated an evolution in the women’s perspectives by relating to three continua: (a) integration versus splitting, (b) loneliness versus shared experience, and (c) suppression versus activism.

Integration versus splitting: bridging the divide through theatrical exploration

At the beginning of the process, the participants in this study reported that changes in couplehood relationships were related to the shift from the role of an intimate partner to a parental or maternal role. These roles emerged in response to their spouses’ increasing vulnerability and dependency. Several studies have shown that as spouses’ functioning declines due to dementia, caregiving spouses experience changes in their identity and roles. These changes force caregiving spouses to cope with their disintegrating marital life and develop a new role system, which often consists of adopting a parental attitude toward their spouse (Hayes et al., 2009; Paun, 2003). However, equating dementia with a return to childhood can lead to an infantilizing perspective that diminishes the autonomy of individuals with dementia and imposes a patronizing hierarchy within the relationship (Jongsma & Schweda, 2018). This approach overlooks the complexity of couplehood and creates a disconnect between the individual’s present identity and their lifelong selfhood. In the current study, the theatrical work presented a range of roles that went beyond mothering. The plasticity of the dramatic realm enabled movement into the past by linking current experiences to the long-term relationship (Harel & Keisari, 2021; Keisari, 2021). This approach did not associate the caregiver role with a maternal role but instead integrated it into a continuous couple experience that evolved with the onset of dementia. New roles such as guardian, guide, and companion, which are more suited to caregiving for a spouse than for a parent to a child, emerged. This not only moderated the split but also promoted a more integrative perspective and contributed to creating a sense of continuity in the relationship throughout the life course. This integration of roles emphasizes the continuity of identity in individuals with dementia through relationships, emotional connections, and shared experiences (Medina, 2013). For these caregiving women, this perspective offered a way to navigate their evolving roles not only by replacing intimacy with parental responsibility, but by fostering a relational dynamic that adapted to change while preserving emotional bonds. This approach acknowledges the social and emotional value of both caregivers and individuals with dementia, by positioning their relationship over time at its core. This helps reshape social perceptions beyond narratives of loss and burden (Quinn & Toms, 2019), and challenges the way dementia is often framed in aging discourse through a lens of fear and burden which reinforces ageist stereotypes rather than being understood as part of broader human experience (Chivers, 2021). In addition, the evolving role system revealed through the dramatic work challenges the stigmatization of caregiving women and what Dolan (2020) termed the feminization of dementia narratives. Rather than being framed solely through the lens of burden and sacrifice, their strength, agency, and emotional depth come to the forefront, offering a more comprehensive perspective on their caregiving roles.

Loneliness versus shared experiences: removing the barriers to communication and support

Shifts in interpersonal relationships intensify spouses' sense of loneliness as they lose their companions to dementia (Martínez-Santos et al., 2021). This experience of loneliness also stems from public stigma and self-stigma related to dementia and caregiving, and included feelings of shame, embarrassment, and fear of judgment (Abojabel & Werner, 2019). In the present study, the dramatization of the empty stage contrasted starkly with the dramatized scenes of past events where the stage was full of movement and interaction, thus capturing the experience of loss and loneliness in these women’s lives. At the same time, the dramatic work under a collective thematic framework fostered a sense of belonging and partnership within the group, which stood in contrast to the theme of loneliness explored in the dramatic process.

Loneliness also emerged in their relationships with their children on stage. However, the theatrical work also revealed that this distance was in part a deliberate choice stemming from their protective maternal role. Studies on changes in social, marital and familial systems show that they lead to changes in the caretaking spouse’s sense of identity (Hayes et al., 2009; Musgrave-Takeda et al., 2022). Maintaining a protective maternal role may have helped the women in this study preserve a continuous sense of identity even as their roles shifted in other aspects of life.

Neufeld and Harrison (2003) suggested that caregiving women refrain from seeking assistance from their children to avoid denial, criticism, or conflicts. Similarly, in this study, the women tended to avoid addressing conflicts with their children. However, the dramatic work allowed them to rehearse alternative caregiving roles and enabled them to consider different perspectives on their children’s involvement in their father’s care. Several studies have shown that family members caring for parents with serious illnesses manifest a range of attitudes, highlighting generational gaps in caregiving perceptions and the family’s ability to foster solidarity and manage internal conflicts while maintaining a cohesive front (Anderson & White, 2018; Kobayashi & Funk, 2010). Similarly, in the dramatic work, the expression of concern and solidarity by the “children” enabled the women to step back from their gatekeeper role and voice their need for help. This led to a change in perceptions of family norms and patterns that contributed to alleviating the mothers' loneliness.

Suppression versus activism: exploring opportunities for voicing and changing the reality of caregiving

The findings indicated that the relationship between the caregiving women and state health care institutions was fraught with difficulties. Administrative and bureaucratic red tape generated feelings of isolation, sadness, helplessness, and anger. Bell et al. (2023) also found that administrative processes often intensify the burden and discourage people from seeking the services they are entitled to. However, by playing authoritative figures in the dramatic work the women gained new perspectives and insights. By shifting from a passive stance to actively engaging in the drama, they role-played ways to challenge poor reception, rehearsed how to confront authorities, and drafted a stance-action manifesto to demand their rights. This mirrors another theater participatory action study on oppression and immigrant rights (Kaptani et al., 2021), where theatrical work helped resist institutional stalling and combat daily oppression. Keisari (2021) found that playing the roles of playwrights, actors, and directors enabled older participants in theater groups to transition from passive to active roles, which fostered a wider sense of competency. Similarly, in this study, these roles strengthened the participants and gave them a sense of competence and control over the uncontrollable reality of dementia. The participants transitioned from social isolation to collective empowerment by developing new forms of self-representation and creating a supportive environment for sharing experiences, which helped ease the pressure imposed by the institutions they depend on (Kaptani et al., 2021).

Limitations and future research

This study focused on women caring for spouses with dementia who had previously experienced stable and positive relationships. Future research should investigate groups of women caring for spouses with dementia who have experienced unsafe relationships, particularly given that caregiving is shaped by the outcome of their life together. Future studies could also include groups of women from wider and more diverse cultural backgrounds. The short duration of the study further restricted its ability to examine long-term role changes as dementia progressed. Longitudinal studies could provide deeper insights into how caregiving roles evolve over time.

Conclusion

The current study sheds light on the experiences of women caring for their spouses with dementia from a life-course perspective. These women, often marginalized due to ageism, sexism, and their roles as spouses of men with dementia (Band-Winterstein et al., 2022), were able to voice their silenced experiences through theatrical work. The sessions provide a space for the participants to express central roles in their lives and explore the changes they could pursue. The roles of actors, directors, and playwrights in the theater helped the participants' transition from passive to active roles, which fostered a sense of competence and provided a sense of agency.

Supplementary material

Supplementary material is available online at The ­Gerontologist (https://academic.oup.com/innovateage)

Data availability

Data and analysis from this study can be made available to other researchers upon request made to the corresponding author with appropriate approvals. The study reported in the manuscript was not preregistered.

Funding

This work was supported by the Minerva Center on Intersectionality in Aging (MCIA), The University of Haifa, and Tel-Hai College.

Conflicts of interest: We have no conflict of interest to declare.