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The Stepping Stones Group - Transforming - February 2021

Supporting Intimacy in Aphasia

Supporting Intimacy in Aphasia
Amanda Stead, PhD, CCC-SLP
May 12, 2021

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Editor’s Note: This text is a transcript of the course, Supporting Intimacy in Aphasia, presented by Amand Stead, PhD, CCC-SLP.

Learning Outcomes

After this course, participants will be able to:

  1. Identify the changes in intimacy post-stroke or in conjunction with aphasia.
  2. Explain the outcomes of a community program targeting intimate reconnection of spouses where one person has aphasia.
  3. List ways in which they can develop support for this unmet need within the aphasia community.

Intimacy

The best place to start when talking about intimacy is to determine what we are really talking about.  I recognize that most of you, as SLPs, probably didn’t spend much time in your graduate programs talking about this topic.  But when we use that word in rehabilitation, we’re talking about that relationship between two “intimate partners” as it relates to physical contact (i.e., hand-holding, touch, sexual contact) and also the emotional aspects of intimacy. We have intimate relationships with our friends, but this is beyond those types of intimate partnerships that we think of in terms of spousal relations.  There is also platonic love and romantic love.

When we talk about intimacy, we're talking about that broad range of expression or the full gamut of how we relate to other people.  We're not just talking about the physical aspects.

Intimacy Loss in Aphasia

There has actually been quite a bit of interesting literature about stroke and intimacy, but it has not come through our discipline. One thing we do know is with stroke in the absence of aphasia, intimacy is diminished in up to 84% of couples. This has been found in a number of studies investigating the relationship between partners whether it is dating, being engaged, or being married.  Some of the research has tried to investigate not only the medical and physical implications but the presence of aphasia as well.  The added presence of aphasia makes intimacy recovery even more difficult. Of course, that isn't a big stretch to folks like us who understand that communication is really the foundation of relationships, to begin with.

Intimacy Loss in Aphasia

Why is it that in aphasia, we're seeing this change in an intimate relationship? What are the barriers to reclaiming that intimate relationship between couples? It is thought that there are three barriers that exist:

  • Altered roles within that relationship
  • Loss of an intimate connection
  • Professional training (as it really relates to us)

Altered Roles

When we talk about altered roles, there is a lot we can learn from our colleagues in occupational therapy about what roles look like from their viewpoint. There is this idea of change in occupation.

I'm sure all of you know what it means to be in an intimate partnership or a couple in a relationship with another person. You think about those roles you have within the relationship: who does what and when, what responsibilities are in the home, what patterns of interaction, what occupations or jobs are you taking within that partnership. When someone has a stroke or a brain injury and has aphasia specifically, we know that one of the consequences of neurological injury is a change in role. Conceptually, we often think about that change of role in terms of loss of work, change in physical status, difficulty communicating through social media or email, or even managing finances.

But we can also think of change in occupation in terms of roles within a partnership. When you think about what you are “responsible for” within an intimate partnership, how many of those would change if you acquired a neurological injury? How would the nature of that role change within your partnership? When patients have a significant injury and a communication impairment in addition to that, all of the roles they've had in their life are often upended. Rehab professionals can be particularly attuned to the idea of social connection and the idea of return to work, especially for our younger patients or our pre-retirement.  But we often don't go to that next level of thinking about the intimate relationship between the primary partner and the patient.

The other big altered role, and I know we've all experienced this in working with patients, is this pattern within an intimate partnership, that one person becomes the caregiver or care partner and the other person becomes the recipient of that care. There is a change in responsibility for the other person. Having someone responsible for you or being dependent on someone else has a really significant impact on the way intimacy flows between partners.  When you become a caregiver, and the literature supports this, a lot of your thought processes become pretty focused on logistics and things like safety.  That is not to say that it's not a good idea to focus on those things, because we know it is. But when partners are focused on logistics of recovery, safety, etc., that can create a vacuum of space where intimacy is typically born. If you look at it from the other perspective, if you are the recipient of care and that's been a shift in your role within the relationship that can also create a vacuum where intimacy would have existed in another form.

The next altered role is called “illness narrative” which is not something that I was familiar with before I started doing this work. But this is the idea that after a major medical event like a stroke, or neurological injury, or aphasia, much of their world now revolves around this one thing.  Logistics, finances, communication, everything seems to tie back to the illness. The entire daily progression of the partner's existence is now based on their needs and desire for recovery. That illness narrative can suck up all the energy needed to create that space to re-identify with other people's lives. You become a couple struggling with recovery. You become someone who is dependent on care because you've had a neurological injury. You become a caregiver instead of a partner or a wife or a husband or a fiancé. It’s as if all of those other identities get sucked into this vortex of illness. When we can't reattach ourselves to any of our other identities, it becomes really difficult to form those other parts of the relationship.

The last altered role is poor psychosocial health. It is well-known that folks with neurological injuries are at extraordinarily high risk for anxiety and depression. This is also true for caregivers. When we look at mental health literature, we know that the presence of things like depression exists, which is not unexpected after a neurological injury, and it is difficult to have intimate connections in the same way when you are experiencing mental unwellness or acute depression or anxiety.

One of the main reasons that change in intimacy, lack of intimacy, or diminishing intimacy between partners occurs is because the roles have been altered as a consequence of the neurological event. When aphasia is added to that, it creates a compounding effect that makes it difficult for partners to reclaim that space.

When a spouse has aphasia, the adjustment within the partnership has been shown to be significantly more difficult because in a period of crisis, often people are seeking to connect verbally, to process, to plan, and to reassure. That is precisely the challenge that we face with our patients who have aphasia. 

The consequences of aphasia lead to this change or loss of intimate connection between partners who previously had an intimate connection. We know that sometimes, our patients and families had issues before they had a neurological injury.  We know partnerships, marriages, and relationships come with history and baggage before something big happens. We also know that when something big happens in a family, that doesn't always bring out the best version of folks and stress is an extraordinary equalizer in terms of reaction.  All of these factors can be in addition to the actual underlying communication impairment.  People are bringing their past relationship with them into this new version. This doesn't mean everybody was a perfect partner, then there was aphasia and now it's impaired. We know that's not true.

Change and Loss of Intimate Connection

This change or loss in intimate connection occurs with the emotional connection.  When you can't express your feelings and when you can't talk about your problems, that is really difficult.  Also consider, if you were being cared for, would you be comfortable complaining, protesting, or chewing out your significant other? That's actually part of intimate relationships - the freedom to express discontent. But because of this role reversal and all of these other factors, that's very difficult.

Physically, we see a great proportion of our folks who have had strokes have additional concomitant physical impairments that can change or cause loss of intimate connection. This is particularly true for individuals who need a lot of assistance with ADLs, grooming, dressing, and toileting.  Furthermore, this accelerates into loss of sexual connection. I know that people do not love talking about sex but we need to talk about it a little bit.

The idea that physical change in the body, for a lot of folks, actually impairs their sexual response and their ability to make their body work the way it did previously. It may change their ability to view their body as sexy or the ability to get aroused. That's an actual consequence of neurological injury.

Additionally, the idea that you cannot express or build on the precursor steps of intimacy, which often lead to sexual contact, can make it difficult for the person to experience the sexual aspects of a relationship. I don't think any of us would say that it is the SLP’s responsibility to repair the sexual relationship in a partnership. But what you have to understand is that their lack of ability to communicate is actually one of the pathways to reclaiming that part of a relationship and that is an important aspect of intimacy for many partners that they wish to reclaim.  So, our discomfort in talking about it is a problem.  If everyone is uncomfortable talking about sex and it becomes a taboo subject, then our patients and families really lack the support that they need.

Emotional Stress

We know that the emotional stress of recovery, major medical events, changed and altered roles, change of financial status, issues of disability, issues of needing physical support can all diminish the ability for partners to connect intimately. It is no surprise that when you're stressed, intimacy is not at the top of your priority list.

Physical Limitations

Physical limitations can become a major issue and the lack of communication with your partner can have an impact on intimacy. This lack of communication is not only the difficulties with talking about the problem or the desire for change or wanting to receive counseling. It's really difficult for folks with neurological injury to actually get quality counseling services or psychological support because practitioners don't know how to communicate with them. They don't understand supporting communication.  But a person with aphasia can lack the ability to communicate with their partner to build the precursor steps to intimacy.  For example, it's hard to be friendly, inquire about their day, and express love and gratitude which are things that are often a bridge to intimate connection.

Why Aren't We Addressing This?

The question we really need to ask ourselves, and not just SLPs but all rehab professionals, is why aren't we addressing this? Most patients and families, at the end of the day, want to feel connected to people, to be a part of their community, and to participate.  They want to have intimate relationships, either friendships or loving partnerships, and returning to those intimate relationships is extraordinarily important although it may not be said overtly. 

The acknowledgment of intimacy is not a word that we use very often.  Part of the reason we're not dealing with it is there's a lack of training. You may be asking if this is part of your job or what are your responsibilities around this topic. 

There is also the issue of priorities.  It is no surprise that when you have a patient with a significant neurological injury and a change in their functional status, there is a long list of priorities. Oftentimes, intimacy does not show up on that list because the immediate problems seem to be is this patient stable, are they well, what are we going to do about rehabilitation, work, finances, etc.?   What are we going to do about physical support and home support and living environment?

From our perspective, we're thinking about things like language recovery - apraxia, dysarthria, production, expression, naming, repetition, right? That is what we're thinking about in terms of priority and our PT and OT colleagues are doing the same thing.

What we're not talking about is that intersection of how our work actually gets to a core value for most folks, which is connecting with others through the building and maintenance of intimate connections. We can really get into that impairment level piece and never talk about its consequences or what happens at the level of participation.

The real elephant in the room is how uncomfortable we are about this topic. I actually gave a presentation at ASHA about this subject and I could see how uncomfortable people were with it.  We have such discomfort, socially, with talking about issues of intimacy and sexual wellbeing that we are afraid to bring it up.  We feel that it is invasive to talk about it. We feel like we'll put discomfort onto our patients and families by bringing it up. And, we all assume that someone else will bring it up.  It’s one of those issues where nobody is taking responsibility for the issue. No one's being overt about it. We assume someone else is handling it.

The research actually tells us that's actually not the case and it's creating a lot of consequences. There was an excellent study back in 2007 that found that once a patient is identified as a person with aphasia, then speech-language pathology becomes the sole focus of rehab and individuals with aphasia often became unsupported in other aspects of rehabilitation. You may be thinking that is not true because your colleagues are seeing these patients. Yes, but the impairment in communication is so prominent that all of the other issues are pushed aside.

Aphasia Couples Retreat

What are the consequences of participation in relationships?  To be completely transparent, one of my disclosures is that I'm a member of a local nonprofit in the Pacific Northwest that serves the aphasia community. After years of hearing the community specifically talk about the impact on their partnerships, physically and emotionally close partnerships, we've responded to that need by developing a weekend retreat to focus on that loving, intimate relationship. I want to share some of the information about that so you have an idea and a model for what can be possible. When we developed this retreat, one of the goals was to discuss and specifically normalize how those changing roles affect the identity of each individual.

Goals

There tends to be a lot of guilt on both sides of the partnership as well as resentment about the situation they find themselves in. Part of what we know about coming to accept, acknowledge, and adjust to a situation is being able to put it all on the table. You have to normalize the fact that roles have changed and there have been consequences to that change.

One of the other goals of our retreat is to discuss and practice the revitalization of former interests. Many of our folks with neurological injuries and families with a member who has had a neurological injury have had to abandon a lot of their previously shared interests or activities due to either communication or physical limitations.  Are there ways to get back to doing things that are fun and/or discover new loves and passions?

The last goal is to develop resources to rekindle a relationship and think about how to do that in smaller breakout sessions with both caregivers and individuals with aphasia.

I want to share a video that we made about this retreat so you can get a feel for what we were doing.

*INSERT VIDEO***

In the video you are seeing some of my graduate students from a few years ago.  A lot of folks with aphasia and caregivers of folks with aphasia are pretty isolated socially. We are hoping to provide them with an environment in which they are supported for their communication differences and supported by a community that understands some of the physical, caregiving, and communication challenges that they're experiencing in their partnerships.

After watching the video, you might be asking yourself, “How does cutting lettuce get people back to an intimate partnership?”  What I would say is that activity is actually pretty specific.   Although it may look like these individuals are just prepping food, there are two of us who are spending time with the care partners in the group. We are giving them a space to talk about some of the challenges they're having in their intimate relationship and in exchange, the persons with aphasia are prepping dinner for the whole group. For many of them, this is the first time they've been able to participate in what many of us would consider to be a typical daily occurrence. Helping them return to meaningful participation in their environment, giving them something to be proud of, boosting their self-esteem, and giving them the adaptive tools so that they can participate in an activity not only increases the well-being of the person with aphasia but when they are happy that takes the burden off of the care partner and boosts self-esteem. 

So, returning to roles, finding shared experience and participation is so important because, again, if the entire paradigm is based on the person with aphasia being cared for, then there is no space for an intimate partnership that includes activities like cooking dinner together, having friends over, taking a painting class.  Helping people rediscover or learn how to participate is really important.

Counseling Groups

I absolutely support our role in counseling and emotional wellbeing, particularly for folks who are poor communicators.  Without our assistance and our supported communication, folks with aphasia have a difficult time benefiting from that emotional processing because they can't participate in mental health or counseling services.

Within the context of the retreat, we provide a number of opportunities to process, communicate, and reconnect with supportive professionals. We have several couples groups in which we do a lot of “emotional reconnection” exercises.  We are taking the focus off of poor communication, taking the focus off of caregiving, and giving couples the opportunity to reflect on what they really liked about each other the first time they met. We are reconnecting and giving them access to the alternative identity. We are giving them the opportunity to think about those roles and what they desire out of their partnership.

We are also giving them the opportunity to discuss certain aspects of a relationship. I once led a session specifically about fighting. I know how ridiculous that may sound, but, having conflict is a normal part of a relationship and when you're a poor communicator or you're a caregiver that's actually very complicated. We talk about what conflict might look like and give folks with aphasia supports to make sure they can advocate for themselves or be angry or express sadness. We are also trying to empower the caregiver to know that they are allowed to still be angry and frustrated even though they're caring for someone with a disability.  Addressing these types of situations is very important because they're normal relationship issues.

One of the things we often say at camp is that aphasia does not feel like a prominent part of the retreat. It feels like they're just regular couples' issues and regular relationship issues. If all of you brought your partners to the retreat, I'm sure you would have a similar experience.

We also have some breakout groups to give folks the opportunity to discuss anything specific.  We've had grief groups and groups about physical reconnection or sexual reconnection, all of which are driven by what the couples want. We also offer separate caregiver groups to give them an opportunity to problem-solve, build community, and express emotions that they are not always comfortable expressing around their partner who has aphasia.

One of the things we know about counseling is people have to be given the opportunity to process and move negative emotions out through their body so that they can learn to adjust. You have to learn to put aside those more negative emotions without giving them quite so much power and the only way to do that is to really process. So that is specifically for caregivers.

The camp also had couple and student groups. We have an interdisciplinary team of occupational therapy and speech therapy students working together and one of the things we do is specifically talk about one of the activities they want to get back to as a couple.  How can we support the couple in doing that? What other skills do we need to learn? We want to give them a pathway to reconnection that's not focused on impairment, but adaptation.

What Do People Say About the Retreat

We have conducted a lot of follow-up research on this program.  Our participants say that the respite, the community support, and meeting other folks in similar situations have been really important.

For our students, having the opportunity to do interprofessional practice in education has been really important. Getting more learning tools and skills, particularly for adapting activities the couples would like to participate in again as well as making a plan to carve out time for their primary relationship has been very beneficial.

All of our attendees have expressed a lot of positive support and thanks for the opportunity to spend the weekend reconnecting with their partners. What that really says at end of the day is if we provide an opportunity for folks to focus on their relationships in a context that is supportive of their physical or communication change, that opens up so many doors for folks to get back to communicating with the people they want to and in the way that they want to.  

Roles of the SLPs

For the retreat, SLPs are specifically developing aphasia-friendly materials. We are helping people talk about relationships and making sure those things are all aphasia-friendly by providing keywording during group sessions.  We're helping folks participate in the group sessions and providing keywords as the foundation of supported communication. We, then, use those strategies to facilitate conversations, not to be the intermediary, but to give a foundation for them to ensure nothing is lost in translation.

Facilitating Conversations About Intimacy

Most of you might be thinking that there is no way you can develop an entire weekend-long retreat.   But it is beneficial and was asked for by the community. So, as a professional, how can you start talking about this issue?  There are a few excellent models available.  One is the ExPLISSIT model and the other one is an Intimacy Packet that we have specifically used at the couples' retreat.

ExPLISSIT Model

The ExPLISSIT model is an interdisciplinary model designed to help professionals think about sexuality intervention. It stands for Permission-giving, Limited Information, Specific Suggestions, Intensive Therapy with Reflection and Review. There is a reflective portion of the model that allows practitioners the chance to reflect on their own approaches and biases that might be affecting their facilitation and guidance of conversations about intimacy.

For me, the reflective portion is one of the most important places we can start as a profession. You should ask yourself, how comfortable are you talking about issues of intimacy? Have you ever brought that issue up to patients or families? Has it ever made you uncomfortable? If we're not comfortable discussing our own aspects of intimacy, it can be hard to discuss someone else's. It’s also important to remember that expressions of intimacy are widely variable across romantic and platonic partnerships and that your version of intimacy may not reflect someone else's version of intimacy and that's okay. Again, our role is to help return people to their preferred versions of communication and engagement. We want to be sure we're not introducing our own personal bias and habits into that conversation.

The initial stage of the ExPLISSIT model is based on permission-giving. I believe the most important thing we can do as professionals is give our patients explicit permission to discuss the issue of sexuality.   You could say, “Many people are concerned about how this condition might affect their sex life, their intimacy or communication with their partners, or their marriage. What is your experience?” The literature is extraordinarily clear that most couples are never asked about this issue and that many couples do wonder about it, but were uncomfortable or afraid to ask about it.  By asking the question in this way, we are equalizing that fear. We are opening the door. We're saying, “Hey, here's another thing to think about.” And if couples want to talk about it, they can. This is not necessarily an issue every couple wants to talk about. This might not be where that relationship is right now. But when we don't open the door, we know that couples don't bring it up naturally. So, this is a huge opportunity for us. All we have to do is give permission.

Next is the Limited Information stage which is about offering information about the impact their specific diagnosis might have on intimacy.  In this stage, you can clarify information and give educational materials.  This is an opportunity where you've opened the door, someone brings it up and you say, “Well, here's what I know, and here's some information” or “Here's a referral” or “Here's a follow-up.”

The next stage is Specific Information and this is often a space where, outside of the development of specific supported communication tools, we need to rely on our colleagues. This is when specific recommendations and referrals are made for therapists, sex therapists, counselors, psychologists, sometimes PTs, folks who can help with adaptation for physical limitations or return to sexual engagement. But for SLPs, our role in this stage can be to develop supported communication tools that allow couples to have intimate conversations. Again, intimacy is not translated to just sex. We're translating to a depth of conversation outside of tasks and conversations that build a close partnership.

The final stage is Intensive Therapy and is the idea that this has become a priority for a family or a couple and they're going to engage in intensive therapy to support the issue.

Intimacy Packet

The other model is an intimacy packet that we developed and use at the retreat. Again, the idea is that you're giving people support. The packet has a handout for Sexuality & Intimacy Resources that states, “Being a caregiver can affect: sexual relationships, the role of people, the amount of time and energy, etc.  Then it says, “Sexuality is more than just sexual activity.  It can be helpful to give permission to talk about it."

After the introduction, we provide a low-tech board to give people the opportunity to indicate, “Yes, I want to talk about this.” Or “No, I'm done. I'm outta here.” This is similar to the Permission-giving stage of the EXPLISSIT. What I want you to consider as a practitioner is when you give information to folks and you are supporting them in giving that information, you can just say, “If you want to talk about this, I'm here.”

The permission-giving stage can be as simple as that. I am a firm believer that the bigger the deal we make something, the bigger the deal it is. If your offer of support seems like the most natural, most comfortable thing in the world, then the likelihood of that couple or that person with aphasia taking advantage of it is much higher.

If, however, you say, “Here, I got this packet. I'm sorry if it makes you uncomfortable,” then that makes it weird. People will think, “Oh, you're right. I should be uncomfortable.” So, I think a lot of it is the nuance of our comfort in bringing it up.

Again, the foundation of intimacy is communication, which is overtly impaired in aphasia. This is absolutely your door to open and it is absolutely your door to support. You are the one who can support the person with aphasia and the caregiver to have those conversations and the opportunity to rebuild intimacy if it’s lost.

Next Steps

When we think about strategies, if we have the courage to bring up intimacy, nearly all of the shame and discomfort around it can go away. The idea that having a weekend retreat or giving a patient a packet or giving permission to talk about intimacy is something that is difficult for us, I think, is just not true.

As SLPs, one of the things we value the most about our patients is their ability to have quality relationships with others and participate. To pull the word ‘intimacy’ out of the relationship doesn't make a lot of sense. Many of you have heard about the extraordinary divorce rates for our folks with neurological injury and I can't help but wonder if some of those couples were provided more support, things would have turned out differently. Of course, that's not true for everybody. But, the denying of tools or the lack of creating specific tools for something that's so important, really creates a vacuum of support.

Again, it's so much more complicated because often we don't bring it up. We assume someone else is going to bring it up. Our patients and families aren't always comfortable bringing it up. It's an issue behind a closed door and we know that they need support. I encourage you to initiate these discussions. The initiation doesn't have to be anything more complicated than to say, “One of the challenges with aphasia is it can be difficult to maintain the intimate relationship with your partner. If that's something you're interested in talking about, I'm happy to support you.”

Then if the patient takes you up on the opportunity, determine if there are materials or things that you can develop. Are there community resources? Are there other professionals to refer them to? That open door can lead to the support that the partnership is looking for.

We also need to train professionals who specialize in intimacy on how to communicate with folks with neurological injury, aphasia specifically. It’s an anecdotal fact that most counselors, psychologists, or other allied health professionals don't have a lot of tools for communicating with our patients. But there are things we can do.  Can we provide in-services? Can we train a specific neighborhood professional for our referral stream? Can we think about collaboration in a different way? We need to train folks to be able to talk to our patients to meet this unmet need.

You can create local events. For example, I would love to do a speed date mixer with folks who have injuries. There are a lot of complaints in the community for folks who have neurological injuries that dating is really difficult. Within these types of events, can we talk about intimacy, recovery, and adjustment? I think there are endless populations and this idea shows up in other communities that we serve, particularly the disability community.  It's important to remember that part of participation in life is participation in intimate relationships in whatever form they take and we can support that desire.

Questions and Answers

What is the name of the non-profit that offers the camp?

The Aphasia Couples Retreat is the retreat and the nonprofit is The Aphasia Network and we're centered in the Portland area. For any of you who live in metro areas, you'd be surprised at how many “undercover” nonprofits there are. Another great resource, regardless of where you live, is the Aphasia Recovery Connection. They offer many free resources to practitioners, but mostly families, including online zoom social events for folks.

Can you give an example of a goal addressing increased communication for intimacy?

I would write a goal for increasing communication between preferred partners and I wouldn't be explicit that it's about intimacy. Then, within that goal, whether it's expressive or length or using a communication board, you can use that vessel of intimate communication or the support of a low-tech AAC board or supported communication as your practice run with it. So I would write the same communication goal that you would have always written as appropriate for your setting, whether it's more restorative or more compensatory. Then I would use emotional relationship language as the vocabulary, if that makes sense.

I think that is always a better strategy because it allows you to be more flexible in what your materials look like. Then if your patient expresses interest in going to a couples counselor, you could say, “Great. Let me help you develop some supported communication or low-tech communication boards so that you can better participate in those conversations.” That's another way we can support folks. I am definitely not saying that we are the experts on intimacy or that we are the experts on rehabbing actual relationships. What we are the experts on is communication and in order to restore intimacy, communication is foundational.

How do you address if one partner does not want to talk about intimacy but the other partner wants to participate?

I think that is a problem that's universal to all couples and partnerships. It doesn’t necessarily anything to do with aphasia. I know plenty of typical partnerships where this is probably the issue. I think what you can do is open the door and put it on the table and if it's the person with aphasia who's into the conversation, you can provide them with appropriate supports.  If it's the caregiver who wants to have that conversation and the patient is not there yet, you can give resources or provide supports. But I don't think you have to mediate in any way. If I was sitting in the room with a caregiver and a person with aphasia and it came up and one of them is saying or thinking, “Um, that’s not going to happen” but the other person is thinking it’s important, I might say to the person with aphasia, “What I hear you saying is that this is something that you're really concerned about.  This is really important to you and I can respect that.” Then I would say to the caregiver, “What I hear you saying is that you're not quite ready to talk about this yet. What I'm going to provide you with is some resources and materials for if you get to a place you want to have that or a referral. And I want to support you both in knowing that I'm here for you if you have any questions.”  I think you can go that way so you've been overt in your support of both parties. Remember, we don't want to take sides, which can be really hard in counseling moments.

Do you have a list of counselors you feel comfortable referring your patients to?  If you do, how did you come to decide which counselors would be a good match?

I do have a handful of people that I prefer and I would say it's because I've met them or trained them.  I have not had good luck just throwing people out there into the community and hearing that they're having good experiences with counseling in particular. Something you can do is figure out who your people are going to, or who the primary referral sources are, especially if you have a good marriage and family counselor or sex therapist in your town. Reach out them and explain the situation, “I'm wondering if I could have a chat with you about how comfortable you are communicating with these patients.” Then if they are comfortable, you could train them or do an in-service. There are great online tools that can help folks. I think sometimes we have to open those doors ourself and, of course, that's not billable time and that stinks. So, what do we do with that? Is that worth the extra effort? But I think when you can develop those qualified referral sources, it gives you a lot of credibility with your patients and families. When you send someone to someone else who's excellent, they remember you for it, too.  I think it's worth the investment to build a community of like-minded practitioners with like-minded skills. Unfortunately, it hasn’t been my experience that most practitioners are prepared or trained to interact with folks with communication impairments, particularly aphasia. I think we need to remind them that communication does not equal competence.  One of the biggest challenges for folks in this community is that because they are not always great communicators, they are not treated as competent or equally participating members of society. Because that view of competence is so poor, they are not given quality opportunities to reveal their competence.  And that's where I think we can be the equalizer and the bridge-builder.

 

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amanda stead

Amanda Stead, PhD, CCC-SLP

Amanda Stead, PhD, CCC-SLP is an associate professor at Pacific University in Oregon. She teaches courses in Communication and Aging, Aphasia, Progressive Neurological Disorders, End-of-Life Care, and Counseling. Her research is in the area of evidence-based education, language change in healthy aging and dementia and the applications of technology to serve vulnerable populations.



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This is Part 1 of a two-part series. This course will focus on the purpose and process of using Montessori-based interventions in elder and dementia care. Specific examples, goals and implementation steps will be discussed for easy integration into clinical work. (Part 2 - Course 9270)

Using Montessori Intervention in Dementia Care: Part 2
Presented by Amanda Stead, PhD, CCC-SLP
Video
Course: #9270Level: Introductory1 Hour
This is Part 2 of a two-part series. This course will focus on purposes for and ways to use Montessori-based interventions in elder and dementia care. Specific examples, goals, and case studies will be discussed for easy integration into clinical work. (Part 1 - Course 9312)

End-of-Life Care for the SLP Part 1: How and where we die
Presented by Amanda Stead, PhD, CCC-SLP
Video
Course: #8859Level: Introductory1 Hour
This is Part 1 of a three-part series. This course will introduce issues related to end-of-life care, including the contemporary experience of dying in America, common care settings, and patient values at the end of life.

End-of-Life Care for the SLP Part 2: Roles, responsibilities, and ethics
Presented by Amanda Stead, PhD, CCC-SLP
Video
Course: #8861Level: Introductory1 Hour
This is Part 2 of a three-part series. This course will provide an introduction to the important role that SLPs can play in caring for people near the end of life, and the application of ethical principles to end-of-life situations. Several case studies will be presented.