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Loss of Intimacy

A Cost of Caregiving in Aphasia

Stead, Amanda; White, John

doi: 10.1097/TLD.0000000000000175
Original Articles

The sudden loss of intimacy can have a dramatic effect on satisfaction in a relationship. As many caregivers shift roles and try to personally adjust to their new reality, a steep drop in intimacy can often simultaneously occurs. Aphasia presents a significant barrier to opening discussions about intimacy and sexual contact. The purpose of this article is to discuss the current literature regarding intimacy in aphasia and present solutions for addressing this complex issue. One of the simplest solutions to addressing this gap in care is having rehabilitation professionals introduce these topics early in the rehabilitation process. This is optimally achieved through interdisciplinary training in the use of effective supported communication strategies for persons with aphasia. Another solution is to create community-centered events that allow couples to address issues related to intimacy after rehabilitation ends. This article describes one such program, an Aphasia Couples Retreat, ran as a collaboration between a local nonprofit and university program in the Pacific Northwest. The retreat provides couples with the opportunity to discuss and address issues related to intimacy, learn new skills, and gain support from an interdisciplinary team of students, speech–language pathologists, occupational therapists, and psychologists.

School of Communication Sciences and Disorders (Dr Stead) and School of Occupational Therapy (Dr White), Pacific University, Forest Grove, Oregon.

Corresponding Author: Amanda Stead, PhD, CCC-SLP, School of Communication Science and Disorders, Pacific University, 2043 College Way, #A130, Forest Grove, OR 97116 (Amanda.stead@pacificu.edu).

The retreat experience described in this article is coordinated by The Aphasia Network, a 501(c)(3) serving people with aphasia and their families in the Pacific Northwest.

Amanda Stead has a non-financial relationship as she is a member of the Aphasia Network 501c3 Board. The other author has indicated that he has no financial and no nonfinancial relationships to disclose.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www.topicsinlanguagedisorders.com).

ONE OF THE HIDDEN COSTS of caregiving as an intimate partner is the impact that it has on emotional and physical intimacy. Many people have a difficult time initiating discussions about intimacy and sexuality with health care providers, and when one member of an intimate partnership suddenly becomes disabled, as in aphasia, those conversations do not likely get any easier (Waterhouse & Metcalfe, 1991). When disability affects intimacy, it can have a dramatic effect on relationship satisfaction and this added cost to caregiving is often one of the most undiscussed (Grenier-Genest, Gérard, & Courtois, 2017 ; Palmer & Palmer, 2011). The fear of losing independence coupled with the uncertainty of the future, for both the person with aphasia and the caregiver, can drive many couples to seek the reconnection often fulfilled by physical and emotional intimacy; the presence of aphasia, however, often severely impedes this reconnection. Aphasia introduces a myriad of challenges to maintain a close emotional and physical relationship with a spouse as the intimate partner (Grenier-Genest et al., 2017 ; Palmer & Palmer, 2011). The purpose of the present article is to describe some of the changes in intimate connection that caregivers can experience with their partners with aphasia. Some solutions based in community training and increased counseling are offered. This article will also discuss one community-based program designed to aid couples in their recovery and reconnection.

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BACKGROUND AND SIGNIFICANCE

Intimacy is broadly defined as “close familiarity or friendship ... or sexual intercourse” (Oxford Advanced Learners Dictionary, n.d.). In the context of this article, the relationship between intimate partners will be discussed as it relates to both the physical (sexual contact) and emotional aspects of intimacy (friendship, platonic love, and romantic love). Although expressions of intimacy vary widely between couples, one important aspect of adjustment after aphasia is repairing and reclaiming intimacy between partners. Communication is often an essential part of regaining emotional intimacy between partners. Interviews with the partners of people with aphasia have indicated that they miss the emotional intimacy that comes with discussing their relationship (Lemieux, Cohen-Schneider, & Holzapfel, 2001). Although for many the importance of and satisfaction with sex itself declined, they craved more emotional connection following the trauma of stroke. It is this emotional connection that is so difficult to rebuild when caregivers cannot communicate effectively with their spouse who has aphasia (Lemieux et al., 2001). Stroke in the absence of aphasia diminishes intimacy in up to 84% of couples (Buzzelli, di Francesco, Giaquinto, & Nolfe, 1997 ; Grenier-Genest et al., 2017). Research then shows that the added presence of aphasia makes intimacy recovery even more difficult (Hemsley & Code, 1996). Although nearly 30% of all stroke patients have aphasia, there is a perplexing absence of this population from studies involving intimacy. As a result, the perceptions of people with aphasia and their caregivers are rarely heard and often misunderstood (Lemieux et al., 2001). For this reason, it is critically important that the issue of intimacy be addressed in the rehabilitation process. It is important for health care workers intervening with these couples to, at the very least, provide information and permission to explore how to rebuild intimacy.

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Altered roles and adjustment

Much of the way that a person shapes his or her identity is through the activities that occupy their time, or occupations (Law et al., 1996). These everyday life occupations influence, and are influenced by, the life roles one inhabits (e.g., worker, student, hobbyist, athlete, parent, volunteer). When a member of a couple experiences a neurological injury or condition that leads to subsequent aphasia, many of the occupations they previously pursued become difficult, if not impossible. Because the partner or spouse usually is expected to assume the role of caregiver and the survivor becomes the care recipient, their shared life comes to be dominated by a focus on such things as self-care, medical management, expanded home care duties, and transportation challenges. The illness narrative as described by Kleinman (1988) comes to dominate the couple's lives. In this narrative, their shared life story is now defined by illness, and all of the aspects of care, recovery, medical appointments, and treatments push aside most other activities and concerns. Their range of shared occupations and roles that helped define them as a couple are dramatically diminished and in the process, they may lose their sense of couple identity, individual identity, and the roles and activities associated with those identities (Kleinman, 1988).

These new assumed roles are often unwelcome and stressful and usually disrupt the array of other roles occupied by members of the couple. This altered dynamic can lead to growing dissatisfaction, disharmony, and resentment within a partnership. This is especially the case when typical channels, such as conversation and discussion for working through such problems, are impaired. (Palmer & Palmer, 2011). In addition to making sure that families can navigate their shifting roles, the literature has consistently documented the need for caregivers to receive respite during the recovery process (Cameron, Naglie, Silver, & Gignac, 2013 ; Le Dorze & Signori, 2010 ; Michallet, Le Dorze, & Tétreault, 2001).

For many people, independence is a gateway to self-esteem. When there is a sudden change in a person with aphasia with the ability to hold a job or complete household tasks, or he or she suddenly becomes dependent on others for personal needs, his or her caregiver often faces numerous consequences. What once was a mutual partnership turns into a caregiver and care receiver relationship and the loss of intimacy is just one loss in a long shadow of multiple losses (Kitzmüller & Ervik, 2015). The abrupt shifts in roles and responsibilities within a family can pose many challenges to the psychosocial states of both partners, as well as to their ability to adjust to these new roles. Not only can these challenges deeply impact a partnership, they also can affect the relationship of both partners with their children (Herrmann & Wallesch, 1989 ; Währborg, 1991), and their social networks (Northcott, Moss, Harrison, & Hilari, 2016). To recover intimacy, all people surrounding the person with aphasia will need to adjust to the altered roles now found within their relationship.

Within a coupled partnership, research has shown that this adjustment is significantly more difficult when the spouse has aphasia (Christensen & Anderson, 1989 ; Hemsley & Code 1996 ; Herrmann & Wallesch, 1989 ; Währborg, 1991). This poorer overall adjustment increases the likelihood of relationship friction, which then further decreases both emotional and physical intimacy. A study by Nyström (2009) investigated, through interview, what it was like to be closely connected to a person with aphasia and found that themes surrounding the loss of freedom were prevalent. Caregivers also indicated that they felt an inability to have personal negative feelings and felt guilt over the need for personal space. Furthermore, many caregivers spoke to the change in interactions they now had with their spouse, pointing to an increase in negative interactions and subsequent grief for the person and life they had lost (Nyström, 2009). Many of these partners indicated that they felt an obligation to “stay” with their partner despite struggling with numerous psychosocial consequences of their own. This is corroborated by other work indicating a decrease in relationship satisfaction and significant negative impacts associated with aphasia regardless of the type or severity (Williams & Freer, 1986).

Although the risk of relationship dissatisfaction and strife is high in couples with aphasia, one encouraging finding is that for those couples whose relationships withstand these stresses, psychosocial well-being was found to increase in relation to time since the stroke (Hemsley & Code, 1996). It is the rehabilitation team that has the most potential to expedite this return to well-being by giving added attention to support for the recovery of a satisfying level of intimacy (Palmer & Palmer, 2011).

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Loss of sexual intimacy

Sexuality is a natural component of life for individuals with disabilities, but it is often ignored in the rehabilitation process (Lemieux et al., 2001 ; Palmer & Palmer, 2011). Both caregivers and people with aphasia alike need the emotional support that comes from hugging, touching, holding, kissing, and intercourse. However, sexual intimacy can suffer in many caregiving situations. Fatigue, the presence of care workers in the home, and new roles can affect this relationship between partners. Lemieux et al. (2001) reported that specific to aphasia, caregivers often point to their partners' emotional instability as interfering with sex, not physical limitations. Partners also reported that they missed the emotional intimacy that comes from discussing their relationship with their partner, and this reduced emotional intimacy likely leads to reduced physical intimacy (Lemieux et al., 2001).

Following a stroke, couples often have a lack of or inability to communicate about challenges in the coupled relationship, especially their sexual relationship (Kitzmüller & Ervik, 2015). Another barrier to solving intimate reconnection is that the abrupt change in roles, fatigue, anger, and perceived change in physical appearance on the part of the person with aphasia deeply affected their marriage and created spousal strain (Thompson & Ryan, 2009). This spousal strain further diminished emotional intimacy and sexual relations in a vicious cycle. The emotional connection that was once the facilitator for intimacy and sex may be gone or at least significantly diminished by these factors that strain the relationship.

To investigate this intimate connection and its influence on intimacy, Kitzmüller and Ervik (2015) conducted narrative interviews of 12 female spouses using a phenomenological hermeneutical approach to illuminate participant experience related to living with a stroke. Within these interviews, four main themes were identified that affected the relationship. These themes were (1) they were married to a stranger; (2) the shift from partner to caregiver; (3) sexuality wrapped in silence; and (4) a void to live with. These themes all indicate a sharp drop in perceived intimacy by the caregiver. This study found that coupled life for the female participants was threatened by the multiple consequences of stroke. In addition, the authors found that if sexual activity ended, partners tended to end the intimate relationship out of embarrassment on their own part and on their partners' behalf (Kitzmüller & Ervik, 2015). It was also found that when couples were educated on strategies that improve communication about intimacy, the embarrassment factor was often reduced and the potential to recover intimacy was increased (Kitzmüller & Ervik, 2015). The decrease of intimacy and sexual relations is a substantial part of the grief and sense of loss that caregivers experience when caring for a spouse.

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Helping couples address intimacy

Given that findings indicate substantial consequences to intimacy and relationship satisfaction in aphasia, increased attention must be paid to this aspect of recovery. Although intimacy and sexuality are an important component in a couple's life, it is often left undiscussed by rehabilitation specialists or within the rehabilitation process (Holzapfel, 1994 ; Korpelainen, Nieminen, & Myllylä, 1999 ; Lemieux et al., 2001). A myriad of reasons could contribute to this lack of attention to intimacy and could include issues related to available time, lack of training, discomfort with the topic, and so on. In addition, the literature reveals that within the older aphasia population, this is particularly true because the practitioners that treat them generally view them as asexual (Lemieux et al., 2001 ; Steinke, 1994). Literature addressing the psychological treatment of people with aphasia is notably sparse in comparison with other disorders. Researchers have openly admitted that persons with aphasia and their caregivers are often excluded from studies investigating therapy methods because of their communication barriers (Bronken, Kirkevold, Martinsen, & Kvigne, 2012). To make matters more complicated, a study by Hjelmblink, Bernsten, Uvhagen, Kunkel, and Holmström (2007) found that the identification of aphasia often leads to speech–language therapy becoming the sole focus of rehabilitation and this left individuals with aphasia and their families unsupported in other important aspects of rehabilitation.

Lemieux et al. (2001) interviewed six couples where one member had aphasia to investigate their experiences with intimacy and sexuality post-stroke and their access to information and services related to regaining sexual contact. Of the six couples that participated in the study, none indicated that they were asked about intimacy or sex at any time since their stroke by a health care professional, and five of the six couples indicated that they would have welcomed this information, with many couples suggesting their family practitioner broach the subject (Lemieux et al., 2001).

Although insufficient, the need to address the lingering issues of how intimacy is affected in aphasia and stroke has been acknowledged to some extent in publically available resources such as WebMD and the American Stroke Association. Many of these resources advise couples to seek support from psychologists, nurses, social workers, or counselors who specialize in intimacy. Beyond vague generalities, however, specific information appears to be lacking. The National Stroke Association, for example, one of the United States' largest stroke advocacy organizations, offers scant information on intimacy and suggests, “Ask your doctor about changes to expect and how to deal with them. Be open and honest to your partner if in a relationship to establish or continue good communication” (National Stroke Association, 2015). Given the sensitive nature of issues related to intimacy, the self-initiation of these conversations with medical professionals may be difficult. Furthermore, when aphasia limits the ability to communicate, the suggestion to communicate with both partner and doctor is fraught with problems.

One of the largest problems related to seeking specialized help is often the lack of trained professionals who can also effectively use supported communication to talk with and facilitate conversations with people with aphasia and their caregivers on these topics (Kagan, 1998). Research in the area of supported communication shows that, with training, practitioners and family members can learn how to better communicate and provide communicative access to people with aphasia. Systematic reviews regarding supported communication training suggest positive effects on improving communicative access and participation in people with aphasia when they were interacting with trained partners, including medical professionals (Simmons-Mackie, Raymer, Armstrong, Holland, & Cherney, 2010 ; Simmons-Mackie, Raymer, & Chernery, 2016). Additional training of doctors, nurses, psychologists, counselors, and rehabilitation specialists may be able to bridge the gap in this care resource for couples seeking to regain intimacy. Research has indicated that speech–language pathologists are uniquely qualified to help educate medical and rehabilitation specialists in communicating with people with aphasia (Burns, Baylor, Morris, McNalley, & Yorkston, 2012).

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A model for intimacy intervention

In addition to training medical practitioners in communication strategies, rehabilitation specialists could also be trained in introducing topics of intimacy in their care. One model of addressing intimacy, initially by Annon (1976) as the PLISSIT model and later adapted by Taylor and Davis (2006), is the Ex-PLISSIT model of sexuality intervention, which stands for Permission-Giving, Limited Information, Specific Suggestions, and Intensive Therapy with Reflection and Review. The continuous review approach was expressly added to the Ex-PLISSIT model to aid clinicians in seeking their client's perspective in the form of specific questions about the information or suggestions given (e.g., “How does that sound to you?” “What might your partner feel about that?” Taylor & Davis, 2006). The added reflective portion of the model was added so that practitioners were challenged to reflect on their own approaches and biases that may be affecting their facilitation and guidance of these conversations. See visual of the model later in Figure 1.

Figure 1

Figure 1

This model provides an opportunity for health care workers to help their clients address issues related to sexuality. Although initially developed to guide health care workers in rehabilitation facilities, it has been found useful across settings to direct staff in knowing at what level they are best prepared to provide explicit sexuality permission, education, information, and review (Taylor & Davis, 2006).

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RETREAT FOR COUPLES WITH APHASIA

Beyond strategies that target information access for people with aphasia and their caregivers and community training for better facilitating these conversations in the continuum of care, one strategy for addressing intimacy and the relationship struggles is to create local events that bring members of the aphasia community together to learn from each other. One such program seeks to do this by hosting a yearly Aphasia Couples Retreat. To address the lingering issues of changes in intimacy with aphasia, Pacific University speech–language pathology and occupational therapy programs collaborate with a local nonprofit, The Aphasia Network, a 501(c)(3) nonprofit organization supporting the aphasia community in the Portland, Oregon metro area. The goal of The Aphasia Network is to raise awareness and help survivors rebuild communication-associated life systems affected by aphasia. This university–community collaboration fostered the creation of the Aphasia Couples Retreat in 2016. This weekend retreat program gives people with aphasia and their caregivers an opportunity to reconnect, strengthen their bond as a couple, receive respite, have fun, and build community with other couples also living with aphasia. In group sessions throughout the weekend, couples discuss and form individualized coping methods for the challenges of partnered life with aphasia side-by-side with other couples facing similar challenges. Some of the topics explored include the following:

  • Changing roles and the effect on the identity of the individuals and the couple.
  • How to revitalize former interests and find new activities to share together.
  • How aphasia and related conditions affect intimacy and relationships.
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Retreat participants

The participants of the Aphasia Couples Retreat have included a wide array of individuals across the severity and recovery spectrum. Couples are recruited through public advertising through Facebook, local medical and rehabilitation facilities, and previous engagement with The Aphasia Network nonprofit. Couples of all types are welcome to attend the retreat, including married and unmarried couples, long-term and short-term couples, couples of all sexual orientations or races, and younger and older couples. To attend the weekend retreat, couples must have a diagnosis of aphasia, be medically stable, and have no other significant cognitive conditions. The retreat has a maximum capacity of 15 couples. Although detailed demographic information is not collected as part of the nonprofit's registration procedure, couples have ranged in age, race, severity, profile, marital status, and stroke onset (see Table 1).

Table 1

Table 1

The facilitators and staff for the weekend consist of an interdisciplinary team of occupational therapists, speech–language pathologists, neuropsychologists, nurses, and Aphasia Network staff. Each of these individuals has extensive experience and knowledge in the area of aphasia, counseling, sexuality, and/or recovery from stroke and brain injury. In addition to supporting logistical operations for the weekend, the staff supports the students and couples through social interaction and large and small group sessions. Some of these individualized goals may include discovering a shared leisure activity, communicating during arguments, or planning a monthly date night.

Part of the retreat model is that each couple is paired with an interdisciplinary student team of one speech–language pathology and one occupational therapy graduate student to support them throughout the weekend in both communication and mobility needs. Students receive approximately 5 hrs of retreat-specific training before attending the weekend in the form of both online and face-to-face training sessions. The goal of this pairing is to help students further develop their interprofessional practice skills as research has shown that interprofessional education is essential for producing future competent allied health professionals. The relationship between interprofessional education and client-centered, collaborative practice has been established (D'Amour & Oandasan, 2005), and when health care professionals are trained to work collaboratively and understand each other's scopes of practice, they can improve patient outcomes (Goldberg, Koontz, Rogers, & Brickell, 2012). Health professionals who are trained to understand each other's roles and the value of teamwork are better equipped to work collaboratively and deliver high-quality care and improved patient outcomes (Barnsteiner, Disch, Hall, Mayer, & Moore, 2007 ; D'Amour & Oandasan, 2005 ; Goldberg et al., 2012 ; Tanaka, 2003 ; World Health Organization, 2010). It is also known that these relationships and understandings do not always develop intuitively and that professionals must be exposed to interprofessional practice and cotreatment in order for it to be implemented successfully (Barnsteiner et al., 2007). In addition, it seems as though this practice must be established as early as possible during their clinical coursework and clinical placements (Tanaka, 2003). This interprofessional development and exposure to cotreatment are one of the goals of The Aphasia Network in its efforts to better educate future health professionals in the service of the aphasia community. The intentional placement of students on interdisciplinary teams not only supports couples with a broad range of skills but also facilitates student growth in aphasia rehabilitation.

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Retreat overview

The weekend schedule is designed around providing social opportunities, respite for caregivers, and most importantly, small and large group counseling sessions. Within the retreat, couples are led through a variety of activities that are designed to foster intimacy. Couples have responded positively to the opening activity, where they recount the story of how the couple met and/or fell in love within a large group setting. To foster the retreat atmosphere, students attending the retreat decorate rooms with rose petals, chocolates, and candles prior to the couples' arrival. Retreat attendees are especially appreciative of how this relatively simple touch can spark romantic feelings and demonstrate how sometimes simple gestures help overcome some of the challenges of role strain in the relationship.

Events across the weekend are made “aphasia friendly” through the use of dedicated visual schedules, visual supports for individual activities, and use of an individual's own augmentative and assistive devices. All couples and student teams are provided with a whiteboard and pad of paper to use supported communication strategies. These tools are also spread across all rooms that the retreat inhabits for the weekend. In addition, materials to create low-tech communication devices, such as communication board templates and common local symbols and maps, are brought to the retreat. This allows for the making of weekend-specific communication pages and the updating or creation of communication books. All large group gatherings and sessions are key worded on a large pad by a member of staff.

Approximately 40% (7 out of 18 hrs) of the weekend is spent in small or large group sessions addressing individualized issues related to marriage, aphasia, and adjustment. The other portions are spent engaging in group meals, social times, leisure activities, and respite. One of the highlights of the retreat is the beach visit, where a large bonfire is created and surrounded with beach games, live music, and laughter.

Another prominent social event at the retreat is the final dinner. This event is significant because much of the food served at this event is prepared by the people with aphasia while their caregivers are at a counseling session. In lieu of facilitating a counseling group for only persons with aphasia, while their partners were in session, it was determined from The Aphasia Network's advisory council that an opportunity to relearn or develop cooking skills was needed. The reclaiming of roles and household participation has been shown to increase confidence and autonomy of persons with aphasia (Andersson & Hansebo, 2009 ; Musser, Wilkinson, Gilbert, & Bokhour, 2015). For many of the people with aphasia, this is the first time that they have been able to contribute to meal preparation since their injury, and the sense of pride they show in this is palpable. When caregivers return from this group's session and arrive to see a meal fully prepared by their partners, the sense of pride, astonishment, and gratitude abound. A more comprehensive look at the weekend schedule can be found on The Aphasia Network's Web site (www.aphasianetwork.org).

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Peer mentors

Peer mentoring has been identified as an important support in the early and most stressful period (i.e., the first 2 years) for a couple living with the outcome of a stroke (King & Semik, 2006). The Aphasia Network peer mentors play a crucial role in the groups by tapping their years of experience (on average, 12 years) with caring for their partners with aphasia and offering tips for managing the challenges of the caregiver role. Each couple's retreat has hosted at least two peer mentor couples (included in total participants). Their stories bring theory, as presented by facilitators in short informal educational presentations, to reality. For example, it has been well demonstrated that caregiving is a risk factor for mortality (Perkins et al., 2013 ; Schulz & Beach, 1999), a fact that the peer mentors readily point out and follow immediately with the caution “you've got to take care of yourself, if you plan to keep caring for your partner!” They then emphasize the importance of respite, me-time, connecting with old friends, and keeping up hobbies, work, and/or leisure interests, while acknowledging the challenge of squeezing time for these out of an already overstressed clock and calendar. Peer mentors provide advice on creating those small breaks in one's schedule such as relying on other family members, faith groups, support groups, and discovering new interests, both separately and together. For example, one mentor in the 2017 retreat shared how his wife with aphasia has found new joy in painting, and while she spends a few hours a week with a painting group, he enjoys some me-time out of the caregiver role. The result is that intimacy in their relationship is enriched as they both bring new interests and experiences to appreciate and share, and even a few hours away from each other prompt deeper appreciation of the other when reunited. Throughout the weekend, peer mentors are encouraged to share their stories and advice and often take the lead in small and large sessions by normalizing difficult topics.

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Interdisciplinary counseling groups

One of the core components of the weekend is the counseling groups. These group sessions provide a supportive environment for opportunities to discuss concerns and strategies and how to nurture one's primary relationship. Topics covered in these groups include the following:

  • How to revitalize former interests and find new activities to share together.
  • Changing roles and the effect on identity of the individuals and the couple.
  • How aphasia and related conditions affect intimacy and relationships.
  • Develop resources to rekindle the relationship.

The discussion groups employ a wide range of prompts and interactive exercises to facilitate expression of concerns and mutual support, some of which include both partners and at least one session that includes caregivers only. The smaller sessions are ideal to address subtopics such as coping strategies for managing stress, sexual intimacy, reclaiming friend and family relationships, financial stresses, negotiating arguments, and gaining more physical and/or behavioral health care services. These smaller sessions prompt more complete participation and enable more time to delve into specific topics at levels that best suit those participating. Upon conclusion, the small groups usually come back together to share themes, ideas, and resources that emerged from the breakouts. Staff facilitators for these sessions have included professionals from occupational therapy, psychology, social work, and speech–language pathology assisted by the peer mentors.

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Couples counseling group

The couples group session begins with a series of exercises designed to help couples reconnect. In one activity, the couples are asked to face each other while holding hands and gazing into each other's eyes for a few minutes of silence. Another activity has couples give gratitude to one another for the roles they play in each other's lives. Couples have reported that this and similar activities have allowed them to focus on the strengths and connection they have with their partner rather than the deficits or changes related to aphasia.

The group session also addresses how relationship roles and routines can hide changes that might enable the person with aphasia to do more for himself or herself and free the caregiver to have more personal time. The mentors typically describe how coming to the retreat helps point out progress in independent functioning that otherwise can go undetected, causing the caregiver to continue doing things for the person with aphasia without even asking whether it is still necessary. During activities such as crafting, cooking, or engaging in competitive games, the couples discover that the person with aphasia may have developed new movement, communication, and other skills that they assumed still lay dormant. Recognition of such progress often prompts the couple to seek outpatient therapy services to help optimize the newfound capacities, and group members coach each other in how to best obtain those services relative to their health insurance status and time since stroke.

The Aphasia Couples Retreat prescribes to the Ex-PLISSIT model during group and individual sessions to engage attendees in discussions about supporting emotional and physical intimacy. Staff members at the retreat are encouraged to determine where on the continuum of knowledge and expertise they fall within the Ex-PLISSIT model. As mentioned previously, the Ex-PLISSIT model of sexuality intervention can be used to help staff and clinicians facilitate these discussions (Taylor & Davis, 2006).

Within the group session, issues related to intimacy are raised. Couples appear to appreciate getting general information about sexuality and sexual intimacy during the retreat but have indicated that they need it in measured doses. From past experience, we learned to slowly move into this topic because as the content became increasingly explicit, discussion shut down and looks of discomfort increased. To address this in subsequent sessions, we briefly review a model that acknowledges the role of sexuality, the Ex-PLISSIT model, and the importance of having permission to gain needed information at the right time, as well as the importance of asking for information when desired. Through this model, all staff and supervising clinicians are encouraged to give permission for clients to exist as sexual beings and seek information to enhance their sexual and intimate well-being. The Ex-PLISSIT model was also used to guide the development of the “Adapted Intimacy Packet,” which is used to guide discussions for people with aphasia and their caregivers at the retreat. This packet was developed by the lead occupational therapist as part of a student capstone project at Pacific University.

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Intimacy packet

Although the retreat focuses on a wide range of intimacy topics, due to the sensitive nature of physical intimacy, the couples' retreat program employs a scaffolded packet that guides couples through discussions about different levels of intimacy. The last portion of each intimacy section asks the couple to decide together about proceeding to the next topic. As part of this discussion, each portion of the packet provides an aphasia-friendly communication board for the person with aphasia to respond if needed (see Figure 2).

Figure 2

Figure 2

Topics gradually move toward deeper levels of intimacy and provide resources for adaptation. See Supplemental Digital Content Appendix 1, available at: http://links.lww.com/TLD/A60, for more resources. The levels of intimacy steps and prompts contained in this packet are as follows:

  • Definitions of intimacy; introduction of the topic.
    • Prompt to move to next level: “If you would like to read more about some ideas for creating intimacy with your loved one, continue onto the next page.”
  • Ideas for creating intimate moments with your partner.
    • Prompt to move to next level: “If you would like to read about some ideas for how to engage in sexual intimacy, as well as more resources, please continue onto the next page.”
  • Suggestions for involving sexual intimacy.
    • Prompt to move to next level: “To learn more about body-safe materials, positioning devices, toys that can assist in intimate exploration with your partner, or more guidance and resources, please continue to the next page.”
  • Body-safe materials, positioning devices, toys that can assist in intimate exploration with your partner: End of the packet.

This packet, like others, touches on issues often seen as taboo to talk about outside of a relationship (Lemieux et al., 2001). Not all of the couples attending the couples retreat are receptive to outward discussions about intimacy. This is congruent with low participation rates for post-stroke intimacy studies generally (Lemieux et al., 2001 ; Steinke, 1994). Alternatively, this may be due to the general population's discomfort in discussing intimacy publically, or because many of the couples are older and may have generational or age-related hesitation (Sobecki, Curlin, Rasinski, & Lindau, 2012).

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Caregivers counseling group

While their partners with aphasia are preparing dinner and appetizers for the party, significant others meet in their own group to discuss a wide range of topics including caregiving, stress, resource sharing, and mutual support. These topics are generated within the group by the caregivers themselves. Managing burnout is a common topic, as is loneliness resulting from the changed nature of relationships/reduction in intimacy, effects on other family members, feelings of abandonment by health care systems, and disappearance of social circles and even family members. One of the primary roles facilitators take during this session is to validate and affirm the struggles each caregiver is facing.

The caregiver's group is often led by the participants themselves, and caregivers are well supported by their peers when their sharing triggers emotional expression. This shared community and relational aspect of the caregiver's group tends to be the most powerful as more seasoned members of the community often rally to support the caregivers whose spouses have had more recent injuries. Caregivers are encouraged to express the grief associated with their multiple losses. Through the expression and validation of this grief, the caregivers are often able to more fully move toward adjustment.

Small group breakouts within the caregiver's session often match caregivers with peers experiencing or concerned with similar issues. In the 2018 retreat, three spontaneous small groups formed focusing on (1) anger management, (2) general adjustment, and (3) caregivers whose spouse had recently acquired aphasia (within 1 year). These smaller breakout groups are all facilitated by staff and help caregivers further investigate issues of importance, build further community, and learn from peers. The power of the peer group is evident as the retreat weekend nears closure and discussion turns to sharing contact information and joining of a virtual support group, especially for those outside of urban areas where in-person support groups are more readily available.

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Closing the weekend

As the weekend draws to a close, couples and their student teams meet in a small group to ask couples to identify shared couple and individual goals to pursue in the coming year. These goals are designed to help carry forward the learning from the retreat. They are also asked to establish accountability buddies to check in with periodically to compare notes on progress toward those goals. Examples from their goal sheets have included, among others: inviting friends to dinner; taking a weekend trip to the Oregon coast; finding respite care for 2 hrs per week; pursuing archery; fishing at least once a month in season; finding a couple's counselor; having a date night every week; or getting massage oil and exchanging massages. Returning couples have reported that the goal setting and accountability exercise of prior retreats were important elements as they provided impetus to focus on a positive future and reminded them both of the enjoyable activities and friendships experienced at the couples retreat. The final event at the retreat is a large group sharing session in which couples, staff, and students are allowed to share their thoughts and gratitude from the weekend. The retreat is then concluded with a group song and photo.

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Retreat feedback

As part of the couples retreat, attendees are asked to complete on-site, open-ended format surveys at the beginning and end of the retreat. People with aphasia and their caregivers were given separate surveys about their expectations and satisfaction with the retreat. People with aphasia were given the opportunity to complete these surveys with a trained communication partner other than their spouse. During the 2017 couples retreat, 11 couples participated in this survey. When asked why they wanted to attend the retreat, people with aphasia answered that they wanted to have new experiences, meet new people with aphasia, and spend time with their caregivers out of their usual environment. When caregivers were asked about reasons for attending and what they hoped to get from the event, many caregivers responded that they wanted to create a better bond within their relationship and also strengthen the network and build relationships with other caregivers in the same situation. Some caregivers wanted to benefit their partner with new techniques/strategies or updated communication devices. Several of the caregivers remarked that they looked forward to “taking a break” from their regular caregiver duties for a weekend.

Surveys indicated a difference in perception about intimacy in the relationship poststroke, with more caregivers indicating significant impact than those with aphasia. When asked whether relationship roles had changed since acquiring aphasia, people with aphasia had a large range of responses, with some indicating that they felt that not much had changed, whereas others indicated that “everything had changed.” Nine of the 11 people with aphasia indicated that communication had been the most impacted and that they now felt different. When the caregivers were asked the same question, results were much more congruent within the group. Out of the 11 caregivers surveyed, nine said that the relationship was not at all the same and that “everything had changed.” Multiple caregivers commented on the role changes where they were caring for their partner now. Many also remarked on a steep decrease in the types of activities they could do with their partner because of mobility and communication issues. One caregiver stated, “We used to split everything 50/50, and now I do everything, I do everything alone.” Another stated, “We only talk about what's necessary, not the little things anymore. It's just too hard.” These results are consistent with the literature indicating a significant change in relationship roles where there is a significant shift of family load placed on the caregiver (Hemsley & Code 1996 ; Kitzmüller & Ervik, 2015 ; Währborg, 1991). This role shift creates a significant burden on the caregiver and often results in a loss of intimacy within the relationship.

Post-retreat surveys indicated that overall, the hopes of people with aphasia for the retreat were similar for why they came. Most said that they wanted to meet new people and learn how to become more independent again. They reported that they were left feeling refreshed and more connected to their partners. Caregivers reported that they felt that they had strengthened the connection within their couple, and one caregiver summed up the collective experience in saying that the weekend provided a “feeling that you are not alone.” Another positive benefit of the couples retreat is in the training of future health professionals and community members. In 2017, a camp volunteer who was also a physician assistant faculty member was so impressed with the effectiveness of the supported communication techniques for improving her patient relations that she created a unit to include in the curriculum on patient–practitioner communications so that all students will have access to these methods. This example further solidifies the case for and benefits of interdisciplinary training (Barnsteiner et al., 2007 ; Burns et al., 2012 ; Goldberg et al., 2012).

Future plans for the retreat include the expansion of advertising and community outreach to be able to serve more couples and more diverse couples. In addition, targeted session for persons with aphasia related to intimacy and more intimacy exercises for couples will be added to the retreat schedule.

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CONCLUSIONS

Aphasia itself presents unique challenges to solving the problem of intimacy. A myriad of factors contributes to reduced intimacy between partners in a relationship where one person has aphasia. To maintain relationship intimacy, people need the ability to communicate effectively, to have deep and enriching conversations, and to express normal frustration within a relationship, all of which are potentially altered in aphasia (Lemieux et al., 2001). Caregivers, in particular, are at risk of reduced intimate connection with their partners because of the multitude of losses they experience and the dramatic shift in roles and responsibilities that often come with having a partner with aphasia and associated challenges. Relationship satisfaction surveys post-stroke indicate that spouses of those with stroke are less satisfied with all aspects of intimacy within their relationship post-stroke, including emotional support and connections, as well as sexual relationships (Grenier-Genest et al., 2017 ; Williams & Freer, 1986). The emotional and social adjustment necessary to regain intimate relations post-stroke has been shown to be significantly more difficult for a spouse when language impairment is involved (Hemsley & Code, 1996). The post-trauma focus on language and physical impairment restoration often takes precedence over the emotional needs of caregivers and the couple following a stroke.

The lack of communication between partners due to aphasia adds to their challenges and issues of sexuality are easily silenced. If primary health care workers or rehabilitation specialists do not begin this conversation or are not skilled enough to facilitate it with a person with aphasia, it is often left undiscussed (Lemieux et al., 2001). Because people with aphasia often lack the ability to communicate or initiate this discussion, this neglect can deny people with aphasia access to assessment, counseling, and treatment services. Significant others seem to be in need of guidance and support but do not find that health care workers address sexuality during the rehabilitation process. The importance of using models such as Ex-PLISSIT across the continuum of care can give much needed permission to couples interested in discussing issues related to intimacy. Couples may be more likely to engage in community events, such as the couples retreat, if such permissions are given early and consistently across recovery. Future work in this area should include a more comprehensive investigation of people with aphasia and their caregivers' experiences with intimacy. Future directions should also include a comprehensive program analysis of the Aphasia Couples Retreat and the factors that may contribute to increased couple's satisfaction and support.

This retreat, like other programming across the country and world, is designed to support persons with aphasia and their families in addressing the consequences of aphasia. The numerous camps, retreat, community centers, and social programs being implemented for persons with aphasia and their families are attempting to address the issues of social isolation and life participation in aphasia. The Life Participation Approach in Aphasia has long sought to provide a model of service that refocuses efforts in rehabilitation to the consequences of aphasia. The Aphasia Couples Retreat provides one additional resource for individuals with aphasia grappling with the changes in their life associated with aphasia. The creation of more such programs could begin to address the broader aspects of participation and life satisfaction in aphasia.

Three strategies, as supported by the current literature and the retreat experience, could help alleviate gaps in care around intimacy and sexuality recovery for couples:

  1. Initiate the discussion of intimacy early in recovery and help couples find resources for intimacy recovery (see Supplemental Digital Content Appendix 1, available at: http://links.lww.com/TLD/A60, for more resources).
  2. Train professionals who specialize in intimacy strategies to better communicate with people with aphasia and their caregivers (see Burns et al., 2012).
  3. Create events locally to foster connection within the caregiver community and open discussions about intimacy, recovery, and adjustment.

Although the caregiver of persons with aphasia faces numerous barriers to marital satisfaction, research has indicated that the acceptance of the new relationship roles and communication abilities can lead to a continued fulfilling relationship (Nystrom, 2009). This acceptance and commitment provide a good foundation upon which health care professionals can build with the couple to enhance intimacy in the relationship. The complex relationship between the physical and mental experience of healing for caregivers should be considered during recovery. The benefits of improved intimacy could aid in both caregivers and persons with aphasia in a view of positive well-being. With positive well-being, increased recovery and adjustment often follow.

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      Keywords:

      aphasia; camp; caregiver; communication; intimacy; marriage; sex; stroke

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