Loss of Intimacy a Cost of Caregiving in Aphasia

Amanda Stead and John White

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. Key words: aphasia, camp, caregiver, communication, intimacy, marriage, sex, stroke

NE OF THE HIDDEN COSTS of caregiv- health care providers, and when one member O ing as an intimate partner is the impact of an intimate partnership suddenly becomes that it has on emotional and physical intimacy. disabled, as in aphasia, those conversations Many people have a difficult time initiating do not likely get any easier (Waterhouse discussions about intimacy and sexuality with & 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 Author Affiliations: School of Communication undiscussed (Grenier-Genest, Gerard,´ & Sciences and Disorders (Dr Stead) and School of Occupational Therapy (Dr White), Pacific University, Courtois, 2017; Palmer & Palmer, 2011). The Forest Grove, Oregon. fear of losing independence coupled with The retreat experience described in this article is coor- the uncertainty of the future, for both the dinated by The Aphasia Network, a 501(c)(3) serving person with aphasia and the caregiver, can people with aphasia and their families in the Pacific drive many couples to seek the reconnection Northwest. often fulfilled by physical and emotional Amanda Stead has a non-financial relationship as she intimacy; the presence of aphasia, however, is a member of the Aphasia Network 501c3 Board. The other author has indicated that he has no financial and often severely impedes this reconnection. no nonfinancial relationships to disclose. Aphasia introduces a myriad of challenges to Supplemental digital content is available for this maintain a close emotional and physical rela- article. Direct URL citations appear in the printed tionship with a spouse as the intimate partner text and are provided in the HTML and PDF ver- (Grenier-Genest et al., 2017; Palmer & Palmer, sions of this article on the journal’s Web site (www.topicsinlanguagedisorders.com). 2011). The purpose of the present article is to describe some of the changes in intimate con- Corresponding Author: Amanda Stead, PhD, CCC-SLP, School of Communication Science and Disorders, Pa- nection that caregivers can experience with cific University, 2043 College Way, #A130, Forest Grove, their partners with aphasia. Some solutions OR 97116 (Amanda.stead@pacificu.edu). based in community training and increased DOI: 10.1097/TLD.0000000000000175 counseling are offered. This article will 55

also discuss one community-based program the very least, provide information and per- designed to aid couples in their recovery and mission to explore how to rebuild intimacy. reconnection. Altered roles and adjustment BACKGROUND AND SIGNIFICANCE Much of the way that a person shapes his or her identity is through the activities that Intimacy is broadly defined as “close famil- occupy their time, or occupations (Law et al., iarity or friendship . . . or sexual intercourse” 1996). These everyday life occupations (Oxford Advanced Learners Dictionary, n.d.). influence, and are influenced by, the life roles In the context of this article, the relationship one inhabits (e.g., worker, student, hobbyist, between intimate partners will be discussed athlete, parent, volunteer). When a member as it relates to both the physical (sexual of a couple experiences a neurological injury contact) and emotional aspects of intimacy or condition that leads to subsequent aphasia, (friendship, platonic love, and romantic many of the occupations they previously love). Although expressions of intimacy vary pursued become difficult, if not impossible. widely between couples, one important Because the partner or spouse usually is aspect of adjustment after aphasia is repairing expected to assume the role of caregiver and and reclaiming intimacy between partners. the survivor becomes the care recipient, their Communication is often an essential part shared life comes to be dominated by a focus of regaining emotional intimacy between on such things as self-care, medical manage- partners. Interviews with the partners of ment, expanded home care duties, and trans- people with aphasia have indicated that portation challenges. The illness narrative as they miss the emotional intimacy that comes described by Kleinman (1988) comes to dom- with discussing their relationship (Lemieux, inate the couple’s lives. In this narrative, their Cohen-Schneider, & Holzapfel, 2001). Al- shared life story is now defined by illness, and though for many the importance of and all of the aspects of care, recovery, medical satisfaction with sex itself declined, they appointments, and treatments push aside craved more emotional connection following most other activities and concerns. Their the trauma of stroke. It is this emotional range of shared occupations and roles that connection that is so difficult to rebuild when helped define them as a couple are dramati- caregivers cannot communicate effectively cally diminished and in the process, they may with their spouse who has aphasia (Lemieux lose their sense of couple identity, individual et al., 2001). Stroke in the absence of aphasia identity, and the roles and activities associated diminishes intimacy in up to 84% of couples with those identities (Kleinman, 1988). (Buzzelli, di Francesco, Giaquinto, & Nolfe, These new assumed roles are often un- 1997; Grenier-Genest et al., 2017). Research welcome and stressful and usually disrupt then shows that the added presence of the array of other roles occupied by mem- aphasia makes intimacy recovery even more bers of the couple. This altered dynamic can difficult (Hemsley & Code, 1996). Although lead to growing dissatisfaction, disharmony, nearly 30% of all stroke patients have aphasia, and resentment within a partnership. This there is a perplexing absence of this popu- is especially the case when typical chan- lation from studies involving intimacy. As a nels, such as conversation and discussion result, the perceptions of people with aphasia for working through such problems, are im- and their caregivers are rarely heard and often paired. (Palmer & Palmer, 2011). In addi- misunderstood (Lemieux et al., 2001). For tion to making sure that families can navigate this reason, it is critically important that the their shifting roles, the literature has consis- issue of intimacy be addressed in the rehabil- tently documented the need for caregivers itation process. It is important for health care to receive respite during the recovery pro- workers intervening with these couples to, at cess (Cameron, Naglie, Silver, & Gignac, 2013;

Le Dorze & Signori, 2010; Michallet, Le Dorze, they felt an obligation to “stay” with their &Tetreault,´ 2001). partner despite struggling with numerous psy- For many people, independence is a gate- chosocial consequences of their own. This is way to self-esteem. When there is a sudden corroborated by other work indicating a de- change in a person with aphasia with the abil- crease in relationship satisfaction and signifi- ity to hold a job or complete household tasks, cant negative impacts associated with aphasia or he or she suddenly becomes dependent regardless of the type or severity (Williams & on others for personal needs, his or her care- Freer, 1986). giver often faces numerous consequences. Although the risk of relationship dissatisfac- What once was a mutual partnership turns tion and strife is high in couples with apha- into a caregiver and care receiver relationship sia, one encouraging finding is that for those and the loss of intimacy is just one loss in a couples whose relationships withstand these long shadow of multiple losses (Kitzmuller¨ & stresses, psychosocial well-being was found Ervik, 2015). The abrupt shifts in roles and re- to increase in relation to time since the stroke sponsibilities within a family can pose many (Hemsley & Code, 1996). It is the rehabilita- challenges to the psychosocial states of both tion team that has the most potential to expe- partners, as well as to their ability to adjust dite this return to well-being by giving added to these new roles. Not only can these chal- attention to support for the recovery of a sat- lenges deeply impact a partnership, they also isfying level of intimacy (Palmer & Palmer, can affect the relationship of both partners 2011). with their children (Herrmann & Wallesch, 1989; Währborg, 1991), and their social net- Loss of sexual intimacy works (Northcott, Moss, Harrison, & Hilari, Sexuality is a natural component of life for 2016). To recover intimacy, all people sur- individuals with disabilities, but it is often ig- rounding the person with aphasia will need to nored in the rehabilitation process (Lemieux adjust to the altered roles now found within et al., 2001; Palmer & Palmer, 2011). Both their relationship. caregivers and people with aphasia alike need Within a coupled partnership, research has the emotional support that comes from hug- shown that this adjustment is significantly ging, touching, holding, kissing, and inter- more difficult when the spouse has apha- course. However, sexual intimacy can suf- sia (Christensen & Anderson, 1989; Hemsley fer in many caregiving situations. Fatigue, the & Code 1996; Herrmann & Wallesch, 1989; presence of care workers in the home, and Währborg, 1991). This poorer overall adjust- new roles can affect this relationship between ment increases the likelihood of relationship partners. Lemieux et al. (2001) reported that friction, which then further decreases both specific to aphasia, caregivers often point to emotional and physical intimacy. A study by their partners’ emotional instability as interfer- Nystrom¨ (2009) investigated, through inter- ing with sex, not physical limitations. Partners view, what it was like to be closely con- also reported that they missed the emotional nected to a person with aphasia and found intimacy that comes from discussing their re- that themes surrounding the loss of freedom lationship with their partner, and this reduced were prevalent. Caregivers also indicated that emotional intimacy likely leads to reduced they felt an inability to have personal negative physical intimacy (Lemieux et al., 2001). feelings and felt guilt over the need for per- Following a stroke, couples often have a sonal space. Furthermore, many caregivers lack of or inability to communicate about chal- spoke to the change in interactions they now lenges in the coupled relationship, especially had with their spouse, pointing to an increase their sexual relationship (Kitzmuller¨ & Ervik, in negative interactions and subsequent grief 2015). Another barrier to solving intimate for the person and life they had lost (Nystrom,¨ reconnection is that the abrupt change in 2009). Many of these partners indicated that roles, fatigue, anger, and perceived change in

physical appearance on the part of the per- cialists or within the rehabilitation process son with aphasia deeply affected their mar- (Holzapfel, 1994; Korpelainen, Nieminen, & riage and created spousal strain (Thompson & Myllylä, 1999; Lemieux et al., 2001). A myr- Ryan, 2009). This spousal strain further dimin- iad of reasons could contribute to this lack ished emotional intimacy and sexual relations of attention to intimacy and could include is- in a vicious cycle. The emotional connec- sues related to available time, lack of training, tion that was once the facilitator for intimacy discomfort with the topic, and so on. In ad- and sex may be gone or at least significantly dition, the literature reveals that within the diminished by these factors that strain the older aphasia population, this is particularly relationship. true because the practitioners that treat them To investigate this intimate connection and generally view them as asexual (Lemieux its influence on intimacy, Kitzmuller¨ and Ervik et al., 2001; Steinke, 1994). Literature ad- (2015) conducted narrative interviews of 12 dressing the psychological treatment of peo- female spouses using a phenomenological ple with aphasia is notably sparse in com- hermeneutical approach to illuminate par- parison with other disorders. Researchers ticipant experience related to living with a have openly admitted that persons with apha- stroke. Within these interviews, four main sia and their caregivers are often excluded themes were identified that affected the re- from studies investigating therapy methods lationship. These themes were (1) they were because of their communication barriers married to a stranger; (2) the shift from part- (Bronken, Kirkevold, Martinsen, & Kvigne, ner to caregiver; (3) sexuality wrapped in 2012). To make matters more complicated, silence; and (4) a void to live with. These a study by Hjelmblink, Bernsten, Uvhagen, themes all indicate a sharp drop in perceived Kunkel, and Holmstrom¨ (2007) found that intimacy by the caregiver. This study found the identification of aphasia often leads to that coupled life for the female participants speech–language therapy becoming the sole was threatened by the multiple consequences focus of rehabilitation and this left individuals of stroke. In addition, the authors found that if with aphasia and their families unsupported sexual activity ended, partners tended to end in other important aspects of rehabilitation. the intimate relationship out of embarrass- Lemieux et al. (2001) interviewed six cou- ment on their own part and on their partners’ ples where one member had aphasia to in- behalf (Kitzmuller¨ & Ervik, 2015). It was also vestigate their experiences with intimacy and found that when couples were educated on sexuality post-stroke and their access to in- strategies that improve communication about formation and services related to regaining intimacy, the embarrassment factor was often sexual contact. Of the six couples that par- reduced and the potential to recover intimacy ticipated in the study, none indicated that was increased (Kitzmuller¨ & Ervik, 2015). The they were asked about intimacy or sex at any decrease of intimacy and sexual relations is a time since their stroke by a health care pro- substantial part of the grief and sense of loss fessional, and five of the six couples indicated that caregivers experience when caring for a that they would have welcomed this informa- spouse. tion, with many couples suggesting their family practitioner broach the subject (Lemieux Helping couples address intimacy et al., 2001). Given that findings indicate substantial Although insufficient, the need to address consequences to intimacy and relationship the lingering issues of how intimacy is af- satisfaction in aphasia, increased attention fected in aphasia and stroke has been ac- must be paid to this aspect of recovery. Al- knowledged to some extent in publically though intimacy and sexuality are an impor- available resources such as WebMD and the tant component in a couple’s life, it is of- American Stroke Association. Many of these ten left undiscussed by rehabilitation spe- resources advise couples to seek support

from psychologists, nurses, social workers, A model for intimacy intervention or counselors who specialize in intimacy. Be- In addition to training medical practitioners yond vague generalities, however, specific in- in communication strategies, rehabilitation formation appears to be lacking. The National specialists could also be trained in introducing Stroke Association, for example, one of the topics of intimacy in their care. One model United States’ largest stroke advocacy organi- of addressing intimacy, initially by Annon zations, offers scant information on intimacy (1976) as the PLISSIT model and later adapted and suggests, “Ask your doctor about changes by Taylor and Davis (2006), is the Ex-PLISSIT to expect and how to deal with them. Be open model of sexuality intervention, which stands and honest to your partner if in a relation- for Permission-Giving, Limited Information, ship to establish or continue good communi- Specific Suggestions, and Intensive Therapy cation” (National Stroke Association, 2015). with Reflection and Review. The continuous Given the sensitive nature of issues related review approach was expressly added to to intimacy, the self-initiation of these con- the Ex-PLISSIT model to aid clinicians in versations with medical professionals may be seeking their client’s perspective in the form difficult. Furthermore, when aphasia limits of specific questions about the information the ability to communicate, the suggestion to or suggestions given (e.g., “How does that communicate with both partner and doctor is sound to you?” “What might your partner fraught with problems. feel about that?” Taylor & Davis, 2006). The One of the largest problems related to added reflective portion of the model was seeking specialized help is often the lack of added so that practitioners were challenged trained professionals who can also effectively to reflect on their own approaches and biases use supported communication to talk with that may be affecting their facilitation and and facilitate conversations with people with guidance of these conversations. See visual aphasia and their caregivers on these topics of the model later in Figure 1. (Kagan, 1998). Research in the area of sup- This model provides an opportunity for ported communication shows that, with train- health care workers to help their clients ad- ing, practitioners and family members can dress issues related to sexuality. Although ini- learn how to better communicate and provide tially developed to guide health care workers communicative access to people with apha- in rehabilitation facilities, it has been found sia. Systematic reviews regarding supported useful across settings to direct staff in know- communication training suggest positive ef- ing at what level they are best prepared to fects on improving communicative access and provide explicit sexuality permission, educa- participation in people with aphasia when tion, information, and review (Taylor & Davis, they were interacting with trained partners, 2006). including medical professionals (Simmons- Mackie, Raymer, Armstrong, Holland, & Cherney, 2010; Simmons-Mackie, Raymer, RETREAT FOR COUPLES WITH APHASIA & Chernery, 2016). Additional training of doctors, nurses, psychologists, counselors, Beyond strategies that target information and rehabilitation specialists may be able access for people with aphasia and their to bridge the gap in this care resource caregivers and community training for better for couples seeking to regain intimacy. facilitating these conversations in the contin- Research has indicated that speech–language uum of care, one strategy for addressing inti- pathologists are uniquely qualified to help macy and the relationship struggles is to cre- educate medical and rehabilitation specialists ate local events that bring members of the in communicating with people with aphasia aphasia community together to learn from (Burns, Baylor, Morris, McNalley, & Yorkston, each other. One such program seeks to do 2012). this by hosting a yearly Aphasia Couples

Figure 1. Visual description of the Ex-PLISSIT model. From “The Extended PLISSIT Model for Addressing the Sexual Wellbeing of Individuals With an Acquired Disability or Chronic Illness,” by B. Taylor and S. Davis, 2006, Sexuality and Disability, 25, 135–139. doi:11195-007-9044-x.

Retreat. To address the lingering issues of r Changing roles and the effect on the iden- changes in intimacy with aphasia, Pacific Uni- tity of the individuals and the couple. versity speech–language pathology and occu- r How to revitalize former interests and pational therapy programs collaborate with find new activities to share together. a local nonprofit, The Aphasia Network, a r How aphasia and related conditions affect 501(c)(3) nonprofit organization supporting intimacy and relationships. the aphasia community in the Portland, Ore- gon metro area. The goal of The Aphasia Retreat participants Network is to raise awareness and help sur- The participants of the Aphasia Couples Re- vivors rebuild communication-associated life treat have included a wide array of individu- systems affected by aphasia. This university– als across the severity and recovery spectrum. community collaboration fostered the cre- Couples are recruited through public adver- ation of the Aphasia Couples Retreat in 2016. tising through Facebook, local medical and This weekend retreat program gives people rehabilitation facilities, and previous engage- with aphasia and their caregivers an opportu- ment with The Aphasia Network nonprofit. nity to reconnect, strengthen their bond as a Couples of all types are welcome to attend couple, receive respite, have fun, and build the retreat, including married and unmarried community with other couples also living couples, long-term and short-term couples, with aphasia. In group sessions throughout couples of all sexual orientations or races, the weekend, couples discuss and form indi- and younger and older couples. To attend the vidualized coping methods for the challenges weekend retreat, couples must have a diagno- of partnered life with aphasia side-by-side with sis of aphasia, be medically stable, and have no other couples facing similar challenges. Some other significant cognitive conditions. The re- of the topics explored include the following: treat has a maximum capacity of 15 couples.

Although detailed demographic information collaboratively and understand each other’s is not collected as part of the nonprofit’s reg- scopes of practice, they can improve pa- istration procedure, couples have ranged in tient outcomes (Goldberg, Koontz, Rogers, & age, race, severity, profile, marital status, and Brickell, 2012). Health professionals who are stroke onset (see Table 1). trained to understand each other’s roles and The facilitators and staff for the weekend the value of teamwork are better equipped consist of an interdisciplinary team of occu- to work collaboratively and deliver high- pational therapists, speech–language patholo- quality care and improved patient outcomes gists, neuropsychologists, nurses, and Aphasia (Barnsteiner, Disch, Hall, Mayer, & Moore, Network staff. Each of these individuals has 2007; D’Amour & Oandasan, 2005; Goldberg extensive experience and knowledge in the et al., 2012; Tanaka, 2003; World Health Orga- area of aphasia, counseling, sexuality, and/or nization, 2010). It is also known that these re- recovery from stroke and brain injury. In addi- lationships and understandings do not always tion to supporting logistical operations for the develop intuitively and that professionals weekend, the staff supports the students and must be exposed to interprofessional practice couples through social interaction and large and cotreatment in order for it to be imple- and small group sessions. Some of these in- mented successfully (Barnsteiner et al., 2007). dividualized goals may include discovering a In addition, it seems as though this practice shared leisure activity, communicating during must be established as early as possible during arguments, or planning a monthly date night. their clinical coursework and clinical place- Part of the retreat model is that each cou- ments (Tanaka, 2003). This interprofessional ple is paired with an interdisciplinary student development and exposure to cotreatment team of one speech–language pathology and are one of the goals of The Aphasia Network in one occupational therapy graduate student its efforts to better educate future health pro- to support them throughout the weekend in fessionals in the service of the aphasia commu- both communication and mobility needs. Stu- nity. The intentional placement of students on dents receive approximately 5 hrs of retreat- interdisciplinary teams not only supports cou- specific training before attending the week- ples with a broad range of skills but also facili- end in the form of both online and face-to-face tates student growth in aphasia rehabilitation. training sessions. The goal of this pairing is to help students further develop their interpro- Retreat overview fessional practice skills as research has shown The weekend schedule is designed around that interprofessional education is essential providing social opportunities, respite for for producing future competent allied health caregivers, and most importantly, small and professionals. The relationship between in- large group counseling sessions. Within the terprofessional education and client-centered, retreat, couples are led through a variety collaborative practice has been established of activities that are designed to foster (D’Amour & Oandasan, 2005), and when intimacy. Couples have responded positively health care professionals are trained to work to the opening activity, where they recount

Table 1. Summary of participants of aphasia couples retreat

Total Couples Range of Stroke Number of Mentor Retreat Year Attended Onset Couples Attending

2016 10 1 year to 17 years 3 2017 11 8 months to 18 years 3 2018 15 5 months to 19 years 2

the story of how the couple met and/or an opportunity to relearn or develop cook- fell in love within a large group setting. ing skills was needed. The reclaiming of roles To foster the retreat atmosphere, students and household participation has been shown attending the retreat decorate rooms with to increase confidence and autonomy of per- rose petals, chocolates, and candles prior sons with aphasia (Andersson & Hansebo, to the couples’ arrival. Retreat attendees are 2009; Musser, Wilkinson, Gilbert, & Bokhour, especially appreciative of how this relatively 2015). For many of the people with aphasia, simple touch can spark romantic feelings and this is the first time that they have been able demonstrate how sometimes simple gestures to contribute to meal preparation since their help overcome some of the challenges of role injury, and the sense of pride they show in this strain in the relationship. is palpable. When caregivers return from this Events across the weekend are made “apha- group’s session and arrive to see a meal fully sia friendly” through the use of dedicated vi- prepared by their partners, the sense of pride, sual schedules, visual supports for individual astonishment, and gratitude abound. A more activities, and use of an individual’s own aug- comprehensive look at the weekend schedule mentative and assistive devices. All couples can be found on The Aphasia Network’s Web and student teams are provided with a white- site (www.aphasianetwork.org). board and pad of paper to use supported communication strategies. These tools are also Peer mentors spread across all rooms that the retreat in- Peer mentoring has been identified as an im- habits for the weekend. In addition, materi- portant support in the early and most stress- als to create low-tech communication devices, ful period (i.e., the first 2 years) for a cou- such as communication board templates and ple living with the outcome of a stroke (King common local symbols and maps, are brought & Semik, 2006). The Aphasia Network peer to the retreat. This allows for the making of mentors play a crucial role in the groups by weekend-specific communication pages and tapping their years of experience (on aver- the updating or creation of communication age, 12 years) with caring for their partners books. All large group gatherings and sessions with aphasia and offering tips for managing are key worded on a large pad by a member the challenges of the caregiver role. Each cou- of staff. ple’s retreat has hosted at least two peer men- Approximately 40% (7 out of 18 hrs) of tor couples (included in total participants). the weekend is spent in small or large group Their stories bring theory, as presented by sessions addressing individualized issues re- facilitators in short informal educational pre- lated to marriage, aphasia, and adjustment. sentations, to reality. For example, it has been The other portions are spent engaging in well demonstrated that caregiving is a risk fac- group meals, social times, leisure activities, tor for mortality (Perkins et al., 2013; Schulz and respite. One of the highlights of the re- & Beach, 1999), a fact that the peer mentors treat is the beach visit, where a large bonfire readily point out and follow immediately with is created and surrounded with beach games, the caution “you’ve got to take care of your- live music, and laughter. self, if you plan to keep caring for your part- Another prominent social event at the re- ner!” They then emphasize the importance of treat is the final dinner. This event is signifi- respite, me-time, connecting with old friends, cant because much of the food served at this and keeping up hobbies, work, and/or leisure event is prepared by the people with aphasia interests, while acknowledging the challenge while their caregivers are at a counseling ses- of squeezing time for these out of an already sion. In lieu of facilitating a counseling group overstressed clock and calendar. Peer men- for only persons with aphasia, while their part- tors provide advice on creating those small ners were in session, it was determined from breaks in one’s schedule such as relying on The Aphasia Network’s advisory council that other family members, faith groups, support

groups, and discovering new interests, both to share themes, ideas, and resources that separately and together. For example, one emerged from the breakouts. Staff facilitators mentor in the 2017 retreat shared how his for these sessions have included profession- wife with aphasia has found new joy in paint- als from occupational therapy, psychology, ing, and while she spends a few hours a week social work, and speech–language pathology with a painting group, he enjoys some me- assisted by the peer mentors. time out of the caregiver role. The result is that intimacy in their relationship is enriched Couples counseling group as they both bring new interests and expe- The couples group session begins with a se- riences to appreciate and share, and even ries of exercises designed to help couples re- a few hours away from each other prompt connect. In one activity, the couples are asked deeper appreciation of the other when re- to face each other while holding hands and united. Throughout the weekend, peer men- gazing into each other’s eyes for a few minutes tors are encouraged to share their stories and of silence. Another activity has couples give advice and often take the lead in small and gratitude to one another for the roles they play large sessions by normalizing difficult topics. in each other’s lives. Couples have reported that this and similar activities have allowed Interdisciplinary counseling groups them to focus on the strengths and connec- One of the core components of the week- tion they have with their partner rather than end is the counseling groups. These group ses- the deficits or changes related to aphasia. sions provide a supportive environment for The group session also addresses how opportunities to discuss concerns and strate- relationship roles and routines can hide gies and how to nurture one’s primary rela- changes that might enable the person with tionship. Topics covered in these groups in- aphasia to do more for himself or herself clude the following: and free the caregiver to have more personal r How to revitalize former interests and time. The mentors typically describe how find new activities to share together. coming to the retreat helps point out progress r Changing roles and the effect on identity in independent functioning that otherwise of the individuals and the couple. can go undetected, causing the caregiver to r How aphasia and related conditions affect continue doing things for the person with intimacy and relationships. aphasia without even asking whether it is still r Develop resources to rekindle the rela- necessary. During activities such as crafting, tionship. cooking, or engaging in competitive games, The discussion groups employ a wide range the couples discover that the person with of prompts and interactive exercises to facil- aphasia may have developed new movement, itate expression of concerns and mutual sup- communication, and other skills that they port, some of which include both partners assumed still lay dormant. Recognition of and at least one session that includes care- such progress often prompts the couple givers only. The smaller sessions are ideal to to seek outpatient therapy services to help address subtopics such as coping strategies optimize the newfound capacities, and group for managing stress, sexual intimacy, reclaim- members coach each other in how to best ing friend and family relationships, financial obtain those services relative to their health stresses, negotiating arguments, and gaining insurance status and time since stroke. more physical and/or behavioral health care The Aphasia Couples Retreat prescribes services. These smaller sessions prompt more to the Ex-PLISSIT model during group and complete participation and enable more time individual sessions to engage attendees in to delve into specific topics at levels that best discussions about supporting emotional and suit those participating. Upon conclusion, physical intimacy. Staff members at the re- the small groups usually come back together treat are encouraged to determine where on

the continuum of knowledge and expertise the development of the “Adapted Intimacy they fall within the Ex-PLISSIT model. As men- Packet,” which is used to guide discussions tioned previously, the Ex-PLISSIT model of for people with aphasia and their caregivers sexuality intervention can be used to help at the retreat. This packet was developed by staff and clinicians facilitate these discussions the lead occupational therapist as part of a (Taylor & Davis, 2006). student capstone project at Paciﬁc University. Within the group session, issues related to intimacy are raised. Couples appear to Intimacy packet appreciate getting general information about Although the retreat focuses on a wide sexuality and sexual intimacy during the range of intimacy topics, due to the sensi- retreat but have indicated that they need it in tive nature of physical intimacy, the couples’ measured doses. From past experience, we retreat program employs a scaffolded packet learned to slowly move into this topic because that guides couples through discussions about as the content became increasingly explicit, different levels of intimacy. The last portion of discussion shut down and looks of discomfort each intimacy section asks the couple to de- increased. To address this in subsequent cide together about proceeding to the next sessions, we brieﬂy review a model that topic. As part of this discussion, each por- acknowledges the role of sexuality, the Ex- tion of the packet provides an aphasia-friendly PLISSIT model, and the importance of having communication board for the person with permission to gain needed information at the aphasia to respond if needed (see Figure 2). right time, as well as the importance of asking Topics gradually move toward deeper lev- for information when desired. Through this els of intimacy and provide resources for model, all staff and supervising clinicians are adaptation. See Supplemental Digital Content encouraged to give permission for clients to Appendix 1, available at: http://links.lww. exist as sexual beings and seek information to com/TLD/A60, for more resources. The lev- enhance their sexual and intimate well-being. els of intimacy steps and prompts contained The Ex-PLISSIT model was also used to guide in this packet are as follows:

Figure 2. Example of the aphasia-friendly response board and intimacy-level prompt within intimacy packet utilized at the Aphasia Couples Retreat.

r Definitions of intimacy; introduction of relationships/reduction in intimacy, effects the topic. on other family members, feelings of abandon- ◦ Prompt to move to next level: “If you ment by health care systems, and disappear- would like to read more about some ance of social circles and even family mem- ideas for creating intimacy with your bers. One of the primary roles facilitators take loved one, continue onto the next during this session is to validate and affirm the page.” struggles each caregiver is facing. r Ideas for creating intimate moments with The caregiver’s group is often led by the your partner. participants themselves, and caregivers are ◦ Prompt to move to next level: “If you well supported by their peers when their shar- would like to read about some ideas for ing triggers emotional expression. This shared how to engage in sexual intimacy, as community and relational aspect of the care- well as more resources, please continue giver’s group tends to be the most powerful onto the next page.” as more seasoned members of the community r Suggestions for involving sexual intimacy. often rally to support the caregivers whose ◦ Prompt to move to next level: “To learn spouses have had more recent injuries. Care- more about body-safe materials, posi- givers are encouraged to express the grief as- tioning devices, toys that can assist in sociated with their multiple losses. Through intimate exploration with your partner, the expression and validation of this grief, the or more guidance and resources, please caregivers are often able to more fully move continue to the next page.” toward adjustment. r Body-safe materials, positioning devices, Small group breakouts within the care- toys that can assist in intimate exploration giver’s session often match caregivers with with your partner: End of the packet. peers experiencing or concerned with simi- This packet, like others, touches on issues lar issues. In the 2018 retreat, three sponta- often seen as taboo to talk about outside of neous small groups formed focusing on (1) a relationship (Lemieux et al., 2001). Not all anger management, (2) general adjustment, of the couples attending the couples retreat and (3) caregivers whose spouse had re- are receptive to outward discussions about cently acquired aphasia (within 1 year). These intimacy. This is congruent with low partic- smaller breakout groups are all facilitated by ipation rates for post-stroke intimacy stud- staff and help caregivers further investigate ies generally (Lemieux et al., 2001; Steinke, issues of importance, build further commu- 1994). Alternatively, this may be due to the nity, and learn from peers. The power of the general population’s discomfort in discussing peer group is evident as the retreat weekend intimacy publically, or because many of the nears closure and discussion turns to sharing couples are older and may have generational contact information and joining of a virtual or age-related hesitation (Sobecki, Curlin, support group, especially for those outside of Rasinski, & Lindau, 2012). urban areas where in-person support groups are more readily available. Caregivers counseling group While their partners with aphasia are Closing the weekend preparing dinner and appetizers for the party, As the weekend draws to a close, cou- significant others meet in their own group to ples and their student teams meet in a small discuss a wide range of topics including care- group to ask couples to identify shared couple giving, stress, resource sharing, and mutual and individual goals to pursue in the coming support. These topics are generated within year. These goals are designed to help carry the group by the caregivers themselves. Man- forward the learning from the retreat. They aging burnout is a common topic, as is lone- are also asked to establish accountability bud- liness resulting from the changed nature of dies to check in with periodically to compare

notes on progress toward those goals. Exam- to “taking a break” from their regular care- ples from their goal sheets have included, giver duties for a weekend. among others: inviting friends to dinner; tak- Surveys indicated a difference in percep- ing a weekend trip to the Oregon coast; find- tion about intimacy in the relationship post- ing respite care for 2 hrs per week; pursuing stroke, with more caregivers indicating signif- archery; fishing at least once a month in sea- icant impact than those with aphasia. When son; finding a couple’s counselor; having a asked whether relationship roles had changed date night every week; or getting massage oil since acquiring aphasia, people with aphasia and exchanging massages. Returning couples had a large range of responses, with some have reported that the goal setting and ac- indicating that they felt that not much had countability exercise of prior retreats were im- changed, whereas others indicated that “ev- portant elements as they provided impetus to erything had changed.” Nine of the 11 peo- focus on a positive future and reminded them ple with aphasia indicated that communica- both of the enjoyable activities and friend- tion had been the most impacted and that ships experienced at the couples retreat. The they now felt different. When the caregivers final event at the retreat is a large group shar- were asked the same question, results were ing session in which couples, staff, and stu- much more congruent within the group. Out dents are allowed to share their thoughts and of the 11 caregivers surveyed, nine said that gratitude from the weekend. The retreat is the relationship was not at all the same and then concluded with a group song and photo. that “everything had changed.” Multiple caregivers commented on the role changes where Retreat feedback they were caring for their partner now. Many As part of the couples retreat, attendees also remarked on a steep decrease in the types are asked to complete on-site, open-ended of activities they could do with their partner format surveys at the beginning and end of because of mobility and communication is- the retreat. People with aphasia and their sues. One caregiver stated, “We used to split caregivers were given separate surveys about everything 50/50, and now I do everything, their expectations and satisfaction with the I do everything alone.” Another stated, “We retreat. People with aphasia were given the only talk about what’s necessary, not the lit- opportunity to complete these surveys with tle things anymore. It’s just too hard.” These a trained communication partner other than results are consistent with the literature in- their spouse. During the 2017 couples re- dicating a significant change in relationship treat, 11 couples participated in this survey. roles where there is a significant shift of family When asked why they wanted to attend the load placed on the caregiver (Hemsley & Code retreat, people with aphasia answered that 1996; Kitzmuller¨ & Ervik, 2015; Währborg, they wanted to have new experiences, meet 1991). This role shift creates a significant bur- new people with aphasia, and spend time den on the caregiver and often results in a loss with their caregivers out of their usual envi- of intimacy within the relationship. ronment. When caregivers were asked about Post-retreat surveys indicated that overall, reasons for attending and what they hoped the hopes of people with aphasia for the re- to get from the event, many caregivers retreat were similar for why they came. Most sponded that they wanted to create a bet- said that they wanted to meet new people ter bond within their relationship and also and learn how to become more indepen- strengthen the network and build relation- dent again. They reported that they were ships with other caregivers in the same situa- left feeling refreshed and more connected tion. Some caregivers wanted to benefit their to their partners. Caregivers reported that partner with new techniques/strategies or up- they felt that they had strengthened the con- dated communication devices. Several of the nection within their couple, and one care- caregivers remarked that they looked forward giver summed up the collective experience in

saying that the weekend provided a “feeling 1986). The emotional and social adjustment that you are not alone.” Another positive ben- necessary to regain intimate relations post- efit of the couples retreat is in the training stroke has been shown to be significantly of future health professionals and community more difficult for a spouse when language im- members. In 2017, a camp volunteer who pairment is involved (Hemsley & Code, 1996). was also a physician assistant faculty mem- The post-trauma focus on language and phys- ber was so impressed with the effectiveness ical impairment restoration often takes prece- of the supported communication techniques dence over the emotional needs of caregivers for improving her patient relations that she and the couple following a stroke. created a unit to include in the curriculum on The lack of communication between part- patient–practitioner communications so that ners due to aphasia adds to their challenges all students will have access to these meth- and issues of sexuality are easily silenced. If ods. This example further solidifies the case primary health care workers or rehabilitation for and benefits of interdisciplinary training specialists do not begin this conversation (Barnsteiner et al., 2007; Burns et al., 2012; or are not skilled enough to facilitate it Goldberg et al., 2012). with a person with aphasia, it is often left Future plans for the retreat include the ex- undiscussed (Lemieux et al., 2001). Because pansion of advertising and community out- people with aphasia often lack the ability to reach to be able to serve more couples and communicate or initiate this discussion, this more diverse couples. In addition, targeted neglect can deny people with aphasia access session for persons with aphasia related to in- to assessment, counseling, and treatment timacy and more intimacy exercises for cou- services. Significant others seem to be in need ples will be added to the retreat schedule. of guidance and support but do not find that health care workers address sexuality during CONCLUSIONS the rehabilitation process. The importance of using models such as Ex-PLISSIT across the Aphasia itself presents unique challenges to continuum of care can give much needed solving the problem of intimacy. A myriad of permission to couples interested in discussing factors contributes to reduced intimacy be- issues related to intimacy. Couples may be tween partners in a relationship where one more likely to engage in community events, person has aphasia. To maintain relationship such as the couples retreat, if such permis- intimacy, people need the ability to commu- sions are given early and consistently across nicate effectively, to have deep and enrich- recovery. Future work in this area should ing conversations, and to express normal frus- include a more comprehensive investigation tration within a relationship, all of which of people with aphasia and their caregivers’ are potentially altered in aphasia (Lemieux experiences with intimacy. Future directions et al., 2001). Caregivers, in particular, are should also include a comprehensive program at risk of reduced intimate connection with analysis of the Aphasia Couples Retreat and their partners because of the multitude of the factors that may contribute to increased losses they experience and the dramatic shift couple’s satisfaction and support. in roles and responsibilities that often come This retreat, like other programming across with having a partner with aphasia and as- the country and world, is designed to sup- sociated challenges. Relationship satisfaction port persons with aphasia and their fami- surveys post-stroke indicate that spouses of lies in addressing the consequences of apha- those with stroke are less satisfied with all sia. The numerous camps, retreat, community aspects of intimacy within their relationship centers, and social programs being imple- post-stroke, including emotional support and mented for persons with aphasia and their connections, as well as sexual relationships families are attempting to address the issues (Grenier-Genest et al., 2017; Williams & Freer, of social isolation and life participation in

aphasia. The Life Participation Approach in with people with aphasia and their care- Aphasia has long sought to provide a model givers (see Burns et al., 2012). of service that refocuses efforts in rehabili- 3. Create events locally to foster connec- tation to the consequences of aphasia. The tion within the caregiver community and Aphasia Couples Retreat provides one addi- open discussions about intimacy, recov- tional resource for individuals with aphasia ery, and adjustment. grappling with the changes in their life associ- Although the caregiver of persons with ated with aphasia. The creation of more such aphasia faces numerous barriers to marital sat- programs could begin to address the broader isfaction, research has indicated that the ac- aspects of participation and life satisfaction in ceptance of the new relationship roles and aphasia. communication abilities can lead to a con- Three strategies, as supported by the tinued fulfilling relationship (Nystrom, 2009). current literature and the retreat experi- This acceptance and commitment provide a ence, could help alleviate gaps in care good foundation upon which health care pro- around intimacy and sexuality recovery for fessionals can build with the couple to en- couples: hance intimacy in the relationship. The com- 1. Initiate the discussion of intimacy early plex relationship between the physical and in recovery and help couples find re- mental experience of healing for caregivers sources for intimacy recovery (see Sup- should be considered during recovery. The plemental Digital Content Appendix 1, benefits of improved intimacy could aid in available at: http://links.lww.com/TLD/ both caregivers and persons with aphasia A60, for more resources). in a view of positive well-being. With posi- 2. Train professionals who specialize in in- tive well-being, increased recovery and adjust- timacy strategies to better communicate ment often follow.

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