Supporting Mental Health in People Living with Aphasia

Editor's Note: This text is a transcript of the course, Supporting Mental Health in People Living with Aphasia, presented by Katie Strong, PhD, CCC-SLP.

Learning Outcomes

After this course, participants will be able to: 

• Describe psychosocial impact of aphasia, including depression and anxiety
• Discuss the role of the speech-language pathologist in interprofessional collaboration with mental health providers to support mental health in persons living with aphasia
• Describe three supports/interventions to address mental health in persons living with aphasia

I'm so excited to be here and know that there's interest in this really important topic. My hope is to give you information and plant some seeds so that you can better support the clients that you work with, who are living with aphasia.

What is Mental Health

Let's start with what mental health is. As speech-language pathologists, frequently, our training in mental health isn't very in-depth. We have a course or two on counseling, but if we're talking about how to support mental health in our clients, particularly with aphasia, we need to think about what mental health is. I'm referring to emotional, psychological, and social well-being.

Mental health has a big impact on how we view ourselves as individuals, as well as how we think, feel, and act. It also determines how we might handle stress, relate to others, and make choices. Mental health is an integral part of living successfully.

Mental health is important because it plays a crucial role in developing relationships, impact physical health, and is related to well-being. If we think about working with our clients with aphasia and supporting, not just their language, but their overall general health, making sure that they have good mental health or supports for positive mental health is a crucial part of what we should be attending to and supporting in our clients with aphasia.

Four Dimensions of Mental Health Recovery

While preparing for this course, I came across four dimensions of mental health recovery available through mentalhealth.gov. The areas include health, home, purpose, and community, and are important to consider for someone who has aphasia. This is the idea of being in charge of your health, having positive health, not having a lot of stressors related to health, having purpose through meaningful work or meaningful activities, a safe home environment and a place where we feel comfortable, and have opportunities to engage in our community.

Meet Ann

Let's look at a potential case to apply some of these concepts. Ann, a fictitious person, is a 45-year-old female who is a single mom of a teenage son. She works full-time and has a full social life revolving around work, social groups, and her son's school activities. She also has ADHD and takes medication for anxiety. She goes to therapy to help manage her emotional health.

Prior to her stroke, thinking about Ann and these four dimensions of mental health, she was physically healthy and proactively managing her mental health needs through therapy and medication.  She had a stable and safe environment, where she lived with her son. She had meaningful work and volunteer activities and cared for her son. In her community, she had the opportunity to build relationships, a great social network, friendships, and many opportunities for love, hope, and support.

Looking at Ann, two years post stroke, she's still single and her son is in college. She's not able to work, and she's on disability. She's moved to a new town to live with a family member because she's not able to pay her own rent. She has a limited social life. She still has ADHD and anxiety, but now she also has aphasia and depression. She's not taking medication for ADHD or anxiety but is taking medication for seizures and stroke. She's not talking to anyone anymore about her emotional health. She wants to see a counselor, but her aphasia gets in the way.

If we consider how these dimensions of recovery have changed for Ann after her stroke, she has much less control over her life. In the health dimension, she is now dealing with stroke and aphasia, ADHD, anxiety, and depression. She wants to get some help. She wants to do counseling or therapy, but she's having difficulty accessing that because her aphasia gets in the way.

She's now on disability and has moved in with a sibling who lives in a different town. Her living environment has changed and she may not feel as comfortable in this home environment. She's no longer living with her son because he is in college. Additionally, Ann is now unemployed and she's not volunteering. She doesn't have the same activities because of her son moving to college and her moving away from her community.

Her friend base is also different. All of her friends live in the town that she used to live in. She doesn't interact with her work colleagues anymore because she's not working. She has limited social networks for support, friendship, love, and hope.  While Ann is a fictitious case study, we have all had interactions with individuals like Ann or know of similar experiences.

Psychosocial Impact of Aphasia

The impact of aphasia on psychosocial issues can be significant. Communication is how we connect with people. So, the communication barriers caused by the aphasia can result in difficulty maintaining relationships, and feeling socially isolated can exacerbate feelings of depression or anxiety. Aphasia also has been known to negatively impact quality of life. It can impact how a person views themselves or their identity. They may feel socially isolated and have reduced participation in life activities. 

Chronic Stress

There are a few different terms that are associated with mental health and aphasia. The first is chronic stress. Rebecca Hunting Pompon has done excellent work in this area (2018). She states that people with aphasia report increased stress-related emotional challenges, and stress can then impact depression, frustration, and anxiety. Think about some of the clients that you've worked with. Some clients have a very high level of stress that may interfere with their ability to engage in therapy. This can also negatively impact their quality of life or the trajectory of their recovery. A high level of stress can be harmful to their physical, emotional, and cognitive health and can also impact learning.  When we are highly stressed, it's difficult to retain new information. New learning is a central component of rehabilitation and something we must be aware of with our clients.

Depression

Another mental health term to consider is depression. Depression is a mood disorder that requires five or more symptoms, including a depressed mood or loss of interest or pleasure. Depression has persistent feelings of sadness or hopelessness. People who are depressed have a disinterest or lack of interest in previous activities that they were interested in. Depression is associated with reduced quality of life, reduced rehabilitation outcomes, and increased health costs.

Seventy percent of people with aphasia can experience depression within the first three months post stroke, and 62% persist with depression after one year. Aphasia is a chronic health condition and a chronic change in how someone communicates. People may have difficulty adjusting to living with aphasia, which may be exacerbated by depression.

There's been some work from the Shirley Ryan Ability Lab in Chicago about subthreshold depression. This is a type of depression that can later progress into major depression if not treated and can negatively impact rehabilitation outcomes and quality of life.

Symptoms of subthreshold depression might include low energy, apathy, anxiety, and negative cognitive changes. People with aphasia have a 50% higher risk of depression compared to people who had a stroke with no aphasia. Additionally, 19% of people living with aphasia have depression, and 22% have subthreshold depression. Again, it's certainly co-occurring in the clients we're working with on our caseloads.

In 2018, Baker and colleagues conducted a systematic review to determine what types of non-pharmacological interventions were available to prevent and treat depression in people with aphasia.  They found some interventions that might improve outcomes for people with mild depression, but limited interventions for people with more severe aphasia. Those individuals may require more specialized attention. Baker and colleagues identified stepped psychological care after stroke as a means to address depression, which I will discuss later. 

Laures-Gore and colleagues have a great tutorial in AJSLP on depression for speech-language pathologists (2020). It discusses depression and post stroke, as a type of primer for SLPs. 

Anxiety Disorders

Anxiety disorders are a class of conditions that can include generalized anxiety disorder, panic disorder, and phobia. People with anxiety disorders may try to avoid situations that exacerbate or trigger the symptoms. Anxiety is associated with stroke and impacts recovery and health-related quality of life. Therefore, it can have an impact on rehabilitation outcomes, as well. Forty-four percent of people with aphasia experience anxiety post stroke. Ryan and colleagues did a recent systematic review of non-drug interventions to address anxiety in people with aphasia and revealed that no interventions are currently available to prevent anxiety in people with aphasia (2021). 

So, many of our clients living with aphasia have depression and anxiety.  Unfortunately, mental health is not always a focus of concern for providers, including speech-language pathologists. Baker and colleagues talk about this "double whammy," meaning that people with aphasia must navigate communication and mood with limited psychological support (2020).  They have reduced communication, changes in mood status, and limited support from a psychological standpoint.

Moss and colleagues identified that people with aphasia are interested in receiving psychological support or at least having that option available if they choose to pursue it (2021). Therefore, we need to be thinking about mental health in our work with clients with aphasia, what's available in the communities that we work in, and how we can be facilitators of developing more supports for clients living with aphasia.

SLP's Role in Interprofessional Collaboration with Mental Health Providers

What is our role as speech-language pathologists in interprofessional collaboration with mental health providers to support mental health in persons living with aphasia? Before digging into this question, think about your practice.  Do you have a rich pool of colleagues to work with when you have a client with aphasia who needs psychosocial supports? Is this an area where you always say, "We need somebody, but there is nobody"? Many live and work in communities without a rich network of interventions for mental health supports. 

What can we do to help enrich that collaborative opportunity? Several researchers asked SLPs what their role is in addressing depression and anxiety (Northcott et al., 2017, Sekhon et al., 2015). Although the information is from outside the U.S., it is still applicable.  The researchers found that most SLPs reported that addressing psychosocial issues in people with aphasia was within their scope of practice. Many of us feel that counseling is within our scope of practice for addressing psychosocial issues. However, SLPs also report that they have limited tools to know how to address these issues.  The discrepancy between thinking it is within our scope of practice but not having the tools to address it leaves people with aphasia to navigate mental health challenges on their own. Barriers to addressing psychosocial issues related to not having time, as well as insufficient training.

Northcott and colleagues took it a step further to see what speech-language pathologists identified as barriers and facilitators to addressing well-being for people with aphasia (2019). The barriers they identified were feeling under-skilled, not having a big toolkit, caseload and time pressures, emphasis placed on achieving goals (mostly language-related outcomes), and the complex needs that people with aphasia had. 

The facilitators for addressing well-being included having training and ongoing specialist support (i.e., a mentor or a team to help problem solve, etc. after the training was received), experience, a personal belief that well-being is an integral part of services, support from management, and peer support from colleagues.

Ryan and colleagues refer to SLPs as "communication brokers." Often, SLPs have the opportunity to provide services in a quiet environment, usually one on one. Sometimes, we learn things about our clients that we can take and "broker" to the other team members. If a client has an issue, we can go to the OT or PT or other team member and verbalize for the client if they cannot do so for themselves. However, SLPs sometimes think the lack of formal training in psychological therapy limits what we can do and how confident we feel doing it. While this course won't make you an expert, I hope to give you some ideas to increase your training and confidence.

If we think back to our case study, we know that patients and clients with aphasia often fall through the cracks. "Ann" wanted to access services, but felt like her aphasia got in the way of doing intervention with a mental health professional.

Some possible solutions to address this gap would include training mental health providers on how to communicate with people living with aphasia.  We can show how to use supported conversation, picture graphs, or other visual supports to help mental health providers be better communication partners with people with aphasia.

Another solution is to actively collaborate with mental health providers through co-treatments or conversing about shared clients or potential clients. Having a collegial relationship with mental health providers is the first step. Another potential idea is for SLPs to expand their skill set in psychological therapy. We have an existing skillset as communication partners but we are missing the additional training for expanding skills in psychological therapy. There may be some techniques or tools that we can add to help expand this and address the gap.

We must think about how we can train our colleagues in mental health to be better communication partners for clients with aphasia.  How can we collaborate with mental health providers? How can we learn more about psychological therapy and expand our skillset to support our clients with aphasia?

A study was conducted by Morrow-Odom and Barned in 2019 asking U.S. mental health providers to complete a survey. They were asked what mental health professionals know about aphasia and whether they had even heard of it. Results of the survey indicated that 85% of those surveyed had heard of aphasia and 65% correctly identified aphasia as a language disorder.  Over half of the mental health professionals surveyed had never provided services for someone with aphasia and many reported low confidence in working with people with aphasia.

So, we can see some definite trends between speech-language pathologists not feeling confident in providing mental health services to individuals with aphasia, and mental health providers not feeling confident as well.  We want and need to bring these two skill sets together. It would be a beneficial partnership for supporting our clients' mental health and well-being.

Mental Health Providers' Thoughts on Aphasia

Jenna Randolph and I explored mental health providers' thoughts on working with individuals with aphasia. Five mental health professionals who had identified as having some experience in working with people who had aphasia were interviewed. We analyzed the data and identified three themes: barriers or challenges, interdisciplinary collaboration, and therapy looks different.  

Barriers. The first theme identified was barriers. Mental health professionals reported that they don't have adequate training to work with individuals with aphasia. They may have had a course in their graduate training that reviewed aphasia for part of a lecture, but they didn't have much formal training in communicating with individuals who had aphasia. Also, there is the stigma of accessing mental health services, not necessarily with aphasia, but in general. People may feel accessing services for mental health is a sign of weakness or is something they wouldn't necessarily see themselves doing.  So this stigma of mental health is another barrier to treatment.

Accessibility to services is also a barrier. Mental health professionals recognize that the number of providers who are trained and skilled in both mental health services and communicating effectively with people with aphasia is limited. So, these barriers seemed to be fairly similar to the barriers of SLPs. (Maybe not the stigma, but the others barriers.)

Interprofessional Collaboration. Again, we interviewed mental health providers who didn't see people with aphasia as the primary service on their caseload. Still, they had some experience providing services to individuals with aphasia. These providers talked about the importance of interdisciplinary collaboration and that having a relationship with the SLP was beneficial for them in providing services to individuals with aphasia. 

Having the relationship also increased referrals for SLPs and mental health professionals. Knowing a mental health provider is in your community, you are more likely to refer patients to that individual's caseload. So, that knowledge base of getting the referral going was important. Since lack of formal education on aphasia was a barrier, on-the-job training that was afforded to the mental health providers as a result of this interdisciplinary relationship and collaboration was important for providing services to individuals with aphasia.  Additionally, the mental health providers discussed that learning how to communicate with people with aphasia, doing a co-treatment, or introducing a client to a potential provider was an important aspect of this relationship.

Strategies and tools such as learning how to be a better communication partner, engaging in supporting someone, and sharing their messages through visual supports, closed-ended questions, or verbal lead-in were all vital to the mental health professionals interviewed.  And they learned those skills through their partnership with their colleague.

The point is to consider how we can take the lead in engaging with and creating relationships with mental health providers. If we do have that relationship, are we sharing knowledge, tools, and expertise with one another? Are we learning from one another with the long-term goal of creating more access to services so mental health providers can support our clients with aphasia?

Therapy Looks Different. Beyond interdisciplinary collaboration, the third theme that the mental health providers identified was that therapy looks different. And, this is an important aspect for SLPs to think about. It takes a new approach for mental health providers to use the same communication style that an SLP might take.  In mental health services, individuals are asked open-ended and broad questions so that the client is steering the therapy and topic in a direction they want to express themselves at that time. Mental health providers take a long time to develop skills in how to facilitate that style of communication. The style of communication that the SLP uses to support communication in individuals with aphasia is drastically different. For example, we are providing yes/no questions, we are giving pictures for support with some guidance on what the topic might be, or we're using writing and narrowing things down. We're trying to be a supportive communication partner by narrowing it down for that person with aphasia to be able to express themselves. The mental health provider is taking the opposite approach in allowing that client to express whatever feelings or thoughts are on their mind. 

The mental health providers who were interviewed talked about how it takes some readjusting not to feel like they're imposing their thoughts and ideas on the client, but that style of communication for the person with aphasia is actually empowering them to be able to communicate what's on their mind. This difference in approach to providing services takes some getting used to, and requires interdisciplinary collaboration. It's not just mental health providers learning how to communicate better with people with aphasia and implementing it. It's integral to how each of us has been trained in our services.

Role of Mental Health Providers

Santo Pietro and colleagues wrote an article about the role of mental health professionals providing services for people with aphasia. Santo Pietro is a speech-language pathologist, and her colleagues on the paper are mental health professionals. The article addresses similar issues to what I described above.  Both fields recognize this gap, and we need to do something collaboratively to address it. Mental health providers acknowledge the need for services to address depression and mental health needs in people with aphasia. They acknowledge that this is a challenge. Again, we can see these themes coming through - mental health providers might not feel like they have the tools to be able to support mental health in people with aphasia.  If we, as SLPs, only talk about this as an issue within our own networks and our own journal base, then we're not getting the word out to people in different disciplines.  

The article also discusses understanding depression in persons with aphasia, how to assess depression in persons with aphasia, and possibilities for treating depression in persons with aphasia. The article is great for increasing awareness of the life participation approach to aphasia and the powerful combination that a clinician from mental health and speech-language pathology can make.

Role of the SLP 

I hope I've given you some ideas about how we have a role in interdisciplinary support in mental health and that it's our responsibility to create partnerships with mental health providers. Think about how you can establish or strengthen a partnership in the environment where you work. It's an opportunity for us to learn from mental health providers. For example, are there screenings for depression, anxiety, or other mood disorders that we can employ within our practice? Are there techniques we can use to support mental health in clients when we're working with them?

Communication Partner Training for Mental Health Providers

It's our role to educate mental health providers who don't know what aphasia is and how they might be better communication partners for people living with aphasia. Communication partner training for mental health providers is an important step in this process. We can help increase a mental health provider's knowledge of aphasia and become better communication partners.  The Aphasia Institute has a free one-hour e-learning module that is a great entry-level course on supported conversation (https://www.aphasia.ca/).

The FRAME model from Burns (2017) and Baylor and colleagues (2019) is used by healthcare providers working with individuals with dysarthria. But it certainly applies to other communication disorders, as well. FRAME stands for: 

• Familiarize yourself with how your patient communicates before starting the medical interaction
• Reduce your rate of communication
• Assist the patient with communication
• Mix communication methods/use methods beyond speaking and listening
• Engage patient to respect autonomy

This model could be shared with mental health providers to help them think about how to communicate with others.

Supports and Interventions to Address Mental Health in Persons Living with Aphasia

Stepped Psychological Care

Stepped Psychological Care is a framework for addressing mental health needs, where the needs and severity of symptoms are matched to the appropriate level of care.  Level 1 might be anyone who has a stroke and could benefit from these types of interventions. Level 2 includes routine mood screening and interventions for mood symptoms. Levels 3 and 4 require more skilled care to address moderate and severe depression.

There are some Level 1 and 2 interventions that I want to discuss because we can play a role at these levels to help increase mental health and well-being. The Center for Research Excellence in Aphasia Recovery and Rehabilitation at LaTrobe University has some great resources on its website and is a wealth of information for optimizing mental health and well-being (https://www.latrobe.edu.au/research/centres/health/aphasia/research). 

Level 1 Intervention. Level 1 interventions address the lower level needs, and every person who has had a stroke may benefit from these types of interventions. Examples include adjustment, counseling, goal setting, attending support groups, befriending other people with similar experiences, music and art therapy, leisure rehabilitation, and biographic narrative intervention (i.e., using stories to integrate past, present, and future).

Support group finders are a great resource. Two examples are the American Heart Association (https://www.stroke.org/en/stroke-support-group-finder)  and the National Aphasia Association (www.aphasia.org). Not only is it nice to have our clients connect with other people living with similar issues, but it's also beneficial to their mental health. I would encourage you to set up all your clients with support groups.  If there is a support group in your area, you can register your support groups on these websites.  

Other Level 1 interventions include online communities for people with aphasia. The premier one is Aphasia Recovery Connection which has over 13,000 members on Facebook. It's where people with aphasia, care partners, and families can stay in touch with one another. They have two groups. One is a public group, and one is for caregivers and family members. SLPs can join either of those groups and can connect their clients with them.

Another online community is Virtual Connections for Aphasia (https://devices.aphasia.com/virtual-connections), which is a newer collaboration since the pandemic. It offers two to three groups a day, seven days a week, for free so that people with aphasia can connect with other people. 

The Aphasia ASK (Action, Success, and Knowledge) Program by Ryan and colleagues (2017) is another online community.  The person with aphasia and their family and friends are the primary targets of intervention. This is a collaborative learning experience where the expertise of the people with aphasia, family and friends are used in equal partnership with the clinician and, the delivery of the intervention should follow supported conversation. 

There are eight different chapter areas in the program, and you can go through all of them or target chapters 3-7, which are considered essential. 

1. Before we begin
2. Your goals
3. Living the learning
4. Not just words
5. Finding the positive
6. Your story
7. Staying connected
8. Summing up

ASK is a resource listed on the LaTrobe website that I mentioned earlier.  There is a training manual, and all eight modules with workbooks are free and downloadable on that website (https://www.latrobe.edu.au/research/centres/health/aphasia/research/optimising). 

Another type of intervention at Level 1 is biographic narrative intervention. I have been doing some work in this area with Sabine Corsten in Germany.  We are helping people with aphasia develop a story about who they were, who they are, and who they will be in order to make meaning out of stroke and aphasia. We, as speech-language pathologists, are well-suited to navigate that type of narrative work.

Friendship is another important area. Targeting relationships and having friendships is an integral part of having a high quality of life. The SUPERB Trial in the UK trains people with aphasia to befriend peers who have just acquired aphasia (Hilari, 2021). People with aphasia are trained to be partners with other people who have recently acquired aphasia and help them understand and navigate the process. This program greatly benefits both the peer befrienders and the people with aphasia. Also, Jamie Azios and I, along with other colleagues, are working on a Friendship Matters research agenda to develop an intervention to help people with aphasia keep the friends that they had prior to their aphasia. That is currently in development.

Level 2 Intervention.  An example of a Level 2 intervention is the SOFIA Trial which trained speech-language pathologists on Solution-Focused Brief Therapy. This is a psychological therapy that focuses on and focuses on a person's resources versus focusing on their deficits. SLPs were trained to deliver six sessions to people with aphasia over three months. The training was fairly intensive, with six days of training with ongoing mentorship. The results are positive in that this type of psychological training can be modified to support people with aphasia, and the SLP may acquire additional skills to help address mental health needs.

Let's go back to our case patient, Ann, and how we can support her mental health a bit more now that we have more information on how to help her. Ann still had her stroke and aphasia but manages her ADHD and depression with collaborative mental health services between a mental health provider and an SLP. She's still on disability, is living with her sister, and her son is still in college.  There is not much change in the home environment. But maybe we could have some input where she is participating in a peer befriending project, or she is working in a storytelling process where she's developing and making meaning out of her stroke. Then, within the community, maybe we've employed the Aphasia ASK Project or a Friendship Matters program. We've connected her with a local support group or an online support group to help instill deeper relationships and empower her with hope.

Hopefully, this gives you some ideas for mental health supports for our clients, as well as some ideas for partnering with individuals from other disciplines, particularly mental health providers. Consider what you might be willing to commit to and to advocate for the mental health of your clients with aphasia. Is it establishing or deepening a relationship with a mental health colleague or providing training to mental health colleagues to be better communication partners? Consider connecting your clients with aphasia to other support groups or exploring some of the stepped psychological care interventions at level one more deeply. 

Questions and Answers

What do you recommend when a patient's mental health needs equate to a Level 3 or 4, but there's no access to mental health support?

Certainly collaborate with the team that does exist. Whether talking to the primary care physician or if there's a neurology team or something like that, see what can be done to help develop some of those supports. Maybe there is something accessible through teletherapy that isn't necessarily in the community but could be provided. There is no easy answer. We may need to do the work so that maybe in the future, this won't be as big of an issue. But I would say to network and see what resources might exist that you might not know about. I don't know if that's a great answer, but it's honest.

We are looking for an appropriate counseling group in the community to partner with so that we can offer mental health resources to our aphasia group members. Do you have any recommendations for finding appropriate counselors or group practices?

Reach out to your state networks. Is there a community on aging or a mental health state association that may have some supports in place that you could partner with? Recently in Michigan, we discovered a group kind of by accident. So, see what is available at the state level to help you identify some groups that are within communities.

Also, many university clinics provide support groups for clients that are serviced there. 

Resources

Aphasia Institute

• Introduction to SCA E-learning Module Aphasia Institute  https://www.aphasia.ca/home-page/health-care-professionals/knowledge-exchange 

The Centre for Research Excellence in Aphasia Recovery and Rehabilitation

• Optimizing Mental Health and Wellbeing in Aphasia- including Aphasia ASK training materials https://www.latrobe.edu.au/research/centres/health/aphasia/research/optimising

Support Group Finders

• American Heart Association https://www.stroke.org/en/stroke-support-group-finder   
• National Aphasia Association www.aphasia.org  

Online Aphasia Communities

• Aphasia Recovery Connection https://www.aphasiarecoveryconnection.org/ 
• Virtual Connections https://devices.aphasia.com/virtual-connections     

References

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