Needing support: Resources for living well with aphasia
by Manal Sheikh
In the last two decades, mental health awareness has influenced unprecedented social, academic, and political discussion. Among U.S. adults, the percentage who had received any mental health services within the past year increased from 27.2 million people in 2002 to 40.2 million people in 20191. We are living in an era where the stigma and barriers around seeking therapy are disappearing, and many people benefit from this cultural shift. However, what happens when you are physically unable to talk about those feelings?
Unfortunately, when diagnosed with aphasia, a person’s quality of life changes dramatically and they require a lot of support. People with aphasia can experience cognitive challenges, making it difficult to continue to perform well in their jobs. In an exploration of life with aphasia in working aged adults, some individuals discussed that there was a lack of support from their employers.
This harmful lack of compassion can cause them to lose their jobs or prevent them from advancing in their career, which can contribute to feelings of isolation and possible depression. While there are plenty of speech, physical, and occupational therapy services for physical impairments, there is a lack of awareness regarding the mental health of people diagnosed with aphasia.
You might be wondering, “Does my loved one with aphasia really need a therapist?” The National Institutes of Health revealed that 53% of people with aphasia experience depression within the first three months post-stroke, and 42% persist with depression after one year2. This indicates a correlation between post-stroke depression and cognitive struggles.
Why is there this link? During a stroke, parts of the brain sustain damage or die as a result of blocked or ruptured arteries. After a stroke, the brain’s ability to recover the function of the damaged areas involves many complex processes including rewiring brain circuits and changing neurotransmitter levels, affecting the mood regulating areas of the brain3. In addition, inflammatory responses and hormonal shifts can cause stress, frustration, and anxiety–all of which play a significant role in developing depression.
Speech-Language Pathologists
A speech-language pathologist is trained to assess, diagnose, and treat people with aphasia. They are skilled in facilitating communication and are a vital part of helping people with aphasia regain their communication skills. However, a majority of speech pathologists lack the specialized training to deal with mental health issues and report emotional discomfort when addressing issues such as depression and anxiety4. Many avoid asking their clients about their emotional state during sessions. A speech-language pathologist may be uncomfortable tackling mental health issues as it is out of their knowledge and specific training.
Mental Health Providers
A research study from Central Michigan University, conducted by Katie Strong and Jenna Randolph, interviewed six mental health providers who have provided services to people with aphasia4. They revealed significant barriers that prevent mental health providers from giving proper treatment such as insufficient training and education about aphasia.
An interview conducted with mental health providers who have had little to no experience with people with aphasia found that 46.2% of providers do not feel very confident or are somewhat doubtful about providing services ethically to people with aphasia.5 This is an alarming discovery. Even when conversations about mental health are at an all-time high, people with aphasia are often left behind. In general, researchers urge for the implementation of updated training protocols tailored to working with individuals with aphasia.
Caregivers
How do you advocate for your loved one if you see signs of their personality or behavior changing? You know them better than any provider, so keep detailed records of changes that concern you. Reach out to their speech pathologist and ask for some resources or ways to help. A great way to supplement their individual therapy is with group therapy. Group therapy has many advantages as it can boost self-esteem, connect people with aphasia with others who share their condition, and allow them to tell their stories..6
In fact, at UConn, we have such groups that provide support as well. This includes the aphasia language-support group program, run by Jennifer Mozeiko, in both Storrs and Farmington, Connecticut. The program features different sessions including book clubs for people with aphasia, an aphasia group choir, and even support groups for caregivers and families.
Connecting Speech-Language Pathology with Mental Health
It is important to remember that speech language pathologists (SLPs) play a critical role in advocating for their clients. While providing mental health services is out of their scope of practice, working with clients and their caregivers to identify talk therapy as a communication goal may focus speech therapy efforts on promoting self-agency. SLPs should also try to provide additional resources outside of speech therapy that can open up more avenues of support for their client.
More collaborations should exist between SLPs and mental health providers. SLPs should openly share tips for communicating with people with aphasia, and mental health providers should discuss possible warning signs of depression and anxiety. This will empower all professionals to make appropriate referrals and break down barriers to accessing services. By supporting one another as professionals, clients with aphasia will be more supported in their treatment journey. These small steps in collaboration can address and mend the gap between mental health services and people diagnosed with aphasia.
Future Steps
Strong discussed the future of mental health services for people with aphasia. She questions, “How do we train who’s out there (professionals) and is there a way to influence the pipeline?” At the foundational level, she suggested that training programs in psychology, social work, mental health, etc. should integrate the topics into the graduate curriculum. These courses can equip students to address the mental health needs of people with aphasia or other communication barriers. Similarly, such training could also be done in speech-language pathology graduate programs to familiarize students with understanding emotional wellness. By educating future students on the areas in which current clinicians lack proficiency, we can solve the issue at the root.
Overall, the hope for the future is to raise awareness and incite change. Over the next few decades with the help of more research and discussions, there should hopefully be statistics that highlight a surge in mental health treatment for individuals living with aphasia, mirroring the current rise in mental health awareness.
Sources
[1] Naghavi, F. S., Koffman, E. E., Lin, B., & Du, J. (2019). Post-stroke neuronal circuits and mental illnesses. International Journal of Physiology, Pathophysiology and Pharmacology, 11(1), 1–11.
[2] Strong, K. A., & Randolph, J. (2021). How Do You Do Talk Therapy With Someone Who Can’t Talk? Perspectives From Mental Health Providers on Delivering Services to Individuals With Aphasia. American Journal of Speech-Language Pathology, 30(6), 2681–2692. https://doi.org/10.1044/2021_AJSLP-21-00040
[3] Morrow-Odom, K. L., & Barnes, C. K. (2019). Mental Health Professionals' Experiences with Aphasia. Journal of rehabilitation, 85(1).
[4] Brumfitt, S. M., & Sheeran, P. (1997). An evaluation of short-term group therapy for people with aphasia. Disability and Rehabilitation, 19(6), 221-230.
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