Hello again! I am very happy for our next installment of our “5 Questions With…” series on this blog (second one in a row!) Today, we will be discussing five questions with Dr. Sarah Wallace, one of my wonderful professors from Duquesne University. To me, she is the absolute expert on aphasia, alternative and augmentative communication, and research in the field of speech and language pathology (only partly because she taught all of those classes to me). To introduce my guest, I will be pulling directly from Duquesne University’s Speech-Language-Hearing Clinic’s website:
Kathleen: Hello Dr. Wallace! First, thank you for agreeing to do an interview with me. Following our conversation about my blog post on aphasia, I was thinking about your points that your clinic offers a unique atmosphere for people with aphasia and their families. I want to focus my interview today on how the families of people who have acquired communication disorders may be affected. I have seen that a lot of your research not only involves aphasia and different techniques in using multiple modalities of communication, but also long-term effects on individuals as related to their interpersonal relationships.
So, my first question is how aphasia affects the family of the person with this disorder. What are some things a person may notice changing in their life both immediately and long-term?
SW: Family members face a lot of challenges after their loved one is diagnosed with aphasia. By necessity, they will likely take on many caregiver roles which can vary depending on their loved ones abilities post stroke or brain injury. Additionally, caregivers take on new roles that were once shared with the person who had a stroke or brain injury. These new roles can include managing bills, grocery shopping, childcare, driving, and primary “bread winner”. Finally, the family member is also grieving the loss of their loved one’s communication abilities and perhaps struggling to adapt to the changes in their relationship. These are some generalities, but because everyone’s experience is different, it is difficult to summarize what everyone will experience.
K: What are some basic ways that a family member can accommodate their loved one with aphasia?
Some quick strategies that any communication partner can employ are:
1. Speak at a normal rate with normal intonation
2. Chunk phrases (take a brief pause between phrases)
3. Use short, simple sentences.
4. Turn off the radio or TV, and eliminate other distractions
5. Write or gesture keywords when speaking
6. Encourage the person to use other modalities (“can you show me?”)
7. Verify and confirm messages and comprehension.
For professionals or family members who are looking for more information, check out the Aphasia Institute (www.aphasia.ca) and their information about Supported Conversation for Adults with Aphasia (SCATM).
K: What are some things you think are important for a loved one to do for themselves following a diagnosis of aphasia?
SW: I struggle with suggesting anything that family members should do as like I said above, I like to take the pressure off. I also believe that every family member needs different things at different times. A few things that I have observed that seem to be important or helpful are:
1. Allow yourself to grieve
2. Make your health and well-being a priority (whatever that means for you)
3. Find a support system that works for you (e.g., support groups, other family members of stroke survivors, long-time friends)
4. Ask for help
K: How can a support group help the families of people with aphasia? Can you explain a little what a setting like the Duquesne University Speech-Language-Hearing Clinic can offer to families in terms of support?
SW: Family members may not know anyone else who had a stroke or has aphasia. I believe meeting other people going through similar situations can be helpful and sometimes comforting to family members. At the Duquesne University Speech-Language Hearing Clinic, many family members have the opportunity to check in with each other during their family member’s therapy sessions.
Additionally, we involve family members in therapy sessions in a variety of ways. First, we have one-way-mirrors so family members can watch therapy sessions and learn firsthand what the client is working on in therapy. Our clinical instructors and students, provide family members with education regarding therapy goals and progress. We send out reports with updates on progress each semester so that clients and their families have easy access to their clinical information. Finally, we assign home practice for some clients and family members may, at times, assist with home practice activities.
K: What advise can you give to family members in terms of their involvement with speech-language therapy?
SW: First, I recommend that family members avoid thinking that they need to attend every single therapy session to be involved in therapy. I think it can be just as important for the person to take some time for themselves or to take care of other tasks, even if it means missing a session every now and then. Second, remember that the family member, clinician, and client form a team. An important discussion for the team is how and when home practice should occur. A decision can be made by talking as a team to determine the best way for the family member to assist with home practice or be involved in therapy sessions as appropriate. If the team agrees, one good activity I recommend would be to practice communication partner strategies during the session. As a team, you can discuss what worked and what needs to be improved. This allows the clinician to be working with the family member and person with aphasia as a unit rather than as to separate individuals.
Here are some other resources for those interested:
Aphasia Access – an organization focused on promoting the Life Participation Approaches to Aphasia https://www.aphasiaaccess.org/
Topics in Language Disorders – The issue slated for publication in March 2019 will focus on caregivers. The issue has two articles (Grawburgh et al., 2019; Off et al., 2019) that focus on the topic of caregivers of people with aphasia and a third article (Stead et al., 2019) that focuses on the topic of loss of intimacy between partners associated with living with aphasia.
https://journals.lww.com/topicsinlanguagedisorders/Pages/currenttoc.aspx
A video interview with Dr. Audrey Holland
https://www.youtube.com/watch?v=3rFWtWXMBtY&feature=youtu.be&fbclid=IwAR1It7h1SX_NE6W8-Or2boAEW3ZSk9nddw5nk0m7bdjQDOOhjyv06TQIAlc
Video tips for communicating with someone with aphasia (by someone with aphasia)
https://www.youtube.com/watch?v=e8__Wp0Tpz4
Other information:
https://www.asha.org/public/speech/disorders/familyadjustmentaphasia/
Sarah E. Wallace, Ph.D., CCC-SLP is the Program Director for the Adult Language and Cognition Clinic and Associate Professor in the Department of Speech-Language Pathology. Dr. Wallace received her B.Ed. from Miami of Ohio University, M.A. from Western Michigan and her Ph.D. from the University of Nebraska-Lincoln. Her clinical, research, and teaching interests include assessment and interventions for adults with neurogenic communication disorders with emphasis on augmentative and alternative communication strategies. (https://www.duq.edu/academics/schools/health-sciences/academic-programs/speech-language-pathology/department-facilities/speech-language-hearing-clinic/adult-language-and-cognition-clinic)
Kathleen: Hello Dr. Wallace! First, thank you for agreeing to do an interview with me. Following our conversation about my blog post on aphasia, I was thinking about your points that your clinic offers a unique atmosphere for people with aphasia and their families. I want to focus my interview today on how the families of people who have acquired communication disorders may be affected. I have seen that a lot of your research not only involves aphasia and different techniques in using multiple modalities of communication, but also long-term effects on individuals as related to their interpersonal relationships.
So, my first question is how aphasia affects the family of the person with this disorder. What are some things a person may notice changing in their life both immediately and long-term?
SW: Family members face a lot of challenges after their loved one is diagnosed with aphasia. By necessity, they will likely take on many caregiver roles which can vary depending on their loved ones abilities post stroke or brain injury. Additionally, caregivers take on new roles that were once shared with the person who had a stroke or brain injury. These new roles can include managing bills, grocery shopping, childcare, driving, and primary “bread winner”. Finally, the family member is also grieving the loss of their loved one’s communication abilities and perhaps struggling to adapt to the changes in their relationship. These are some generalities, but because everyone’s experience is different, it is difficult to summarize what everyone will experience.
K: What are some basic ways that a family member can accommodate their loved one with aphasia?
SW: First, I like to help take the pressure off the family member. With all the changes related to role and caregiving, I think it is first okay to help the family member accept that he or she cannot do and be everything. Of course, we hope family members will eventually learn some successful communication strategies, but I think to give them permission to do this when and how makes the most sense to them.
Some quick strategies that any communication partner can employ are:
1. Speak at a normal rate with normal intonation
2. Chunk phrases (take a brief pause between phrases)
3. Use short, simple sentences.
4. Turn off the radio or TV, and eliminate other distractions
5. Write or gesture keywords when speaking
6. Encourage the person to use other modalities (“can you show me?”)
7. Verify and confirm messages and comprehension.
For professionals or family members who are looking for more information, check out the Aphasia Institute (www.aphasia.ca) and their information about Supported Conversation for Adults with Aphasia (SCATM).
K: What are some things you think are important for a loved one to do for themselves following a diagnosis of aphasia?
SW: I struggle with suggesting anything that family members should do as like I said above, I like to take the pressure off. I also believe that every family member needs different things at different times. A few things that I have observed that seem to be important or helpful are:
1. Allow yourself to grieve
2. Make your health and well-being a priority (whatever that means for you)
3. Find a support system that works for you (e.g., support groups, other family members of stroke survivors, long-time friends)
4. Ask for help
K: How can a support group help the families of people with aphasia? Can you explain a little what a setting like the Duquesne University Speech-Language-Hearing Clinic can offer to families in terms of support?
SW: Family members may not know anyone else who had a stroke or has aphasia. I believe meeting other people going through similar situations can be helpful and sometimes comforting to family members. At the Duquesne University Speech-Language Hearing Clinic, many family members have the opportunity to check in with each other during their family member’s therapy sessions.
Additionally, we involve family members in therapy sessions in a variety of ways. First, we have one-way-mirrors so family members can watch therapy sessions and learn firsthand what the client is working on in therapy. Our clinical instructors and students, provide family members with education regarding therapy goals and progress. We send out reports with updates on progress each semester so that clients and their families have easy access to their clinical information. Finally, we assign home practice for some clients and family members may, at times, assist with home practice activities.
K: What advise can you give to family members in terms of their involvement with speech-language therapy?
SW: First, I recommend that family members avoid thinking that they need to attend every single therapy session to be involved in therapy. I think it can be just as important for the person to take some time for themselves or to take care of other tasks, even if it means missing a session every now and then. Second, remember that the family member, clinician, and client form a team. An important discussion for the team is how and when home practice should occur. A decision can be made by talking as a team to determine the best way for the family member to assist with home practice or be involved in therapy sessions as appropriate. If the team agrees, one good activity I recommend would be to practice communication partner strategies during the session. As a team, you can discuss what worked and what needs to be improved. This allows the clinician to be working with the family member and person with aphasia as a unit rather than as to separate individuals.
Here are some other resources for those interested:
Aphasia Access – an organization focused on promoting the Life Participation Approaches to Aphasia https://www.aphasiaaccess.org/
Topics in Language Disorders – The issue slated for publication in March 2019 will focus on caregivers. The issue has two articles (Grawburgh et al., 2019; Off et al., 2019) that focus on the topic of caregivers of people with aphasia and a third article (Stead et al., 2019) that focuses on the topic of loss of intimacy between partners associated with living with aphasia.
https://journals.lww.com/topicsinlanguagedisorders/Pages/currenttoc.aspx
A video interview with Dr. Audrey Holland
https://www.youtube.com/watch?v=3rFWtWXMBtY&feature=youtu.be&fbclid=IwAR1It7h1SX_NE6W8-Or2boAEW3ZSk9nddw5nk0m7bdjQDOOhjyv06TQIAlc
Video tips for communicating with someone with aphasia (by someone with aphasia)
https://www.youtube.com/watch?v=e8__Wp0Tpz4
Thank you so much Dr. Wallace for taking time to talk with us about how aphasia can affect family members and for all of the resources.
If you have any further questions, please leave them below or reach out to us (contact info in our bio).
Until next time!
Kathleen
Other information:
https://www.asha.org/public/speech/disorders/familyadjustmentaphasia/
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