Living With Aphasia

Aphasia creates a negative environment for social activities, which frequently leads to social isolation, loss of autonomy, role changes, and stigmatization¹. Living with communication difficulties after a stroke limits meaningful interactions and functionally masks inherent competence ². This has an impact on an individual’s ability to contribute ideas ³, which in turn has an impact on the quality of interactions and the nature of communication⁴. When compared to their peers, people with aphasia face teasing, are excluded from communication ⁵, and are socially isolated. They are restricted from participating in activities ⁶, which frequently leads to occupational frustrations and a reduction in involvement in daily activities⁷.

People with aphasia never wish to be unable to communicate. Instead, they have labeled themselves as incompetent in the context in which they find themselves. People with aphasia describe the importance of the communication environment as having the ability to foster their participation in activities, express themselves, and comprehend others⁸.
Negative attitudes such as impatience5 and talking about the individual rather than acknowledging them⁹ have a significant impact on their self-esteem and identity¹⁰ . People with aphasia recognize that important issues affecting their ability to communicate are the behavior and responses of family members and community members¹¹ .These attitudes and behaviors affect them emotionally as they go through the stages of denial, anger, depression, and acceptance¹². Many people impacted by aphasia spend a significant amount of time with family and friends, as well as in churches and other community activities ⁷. One upsetting factor that people with aphasia reported as a barrier was a lack of understanding about aphasia and stroke, as well as the specific communication difficulties they experience ⁵. They stated that these negative effects exist because the relative or friend is unable to keep up a conversation ¹³. People with aphasia, emphasize the importance of involving family members in communication rehabilitation ¹⁴in order to promote positive supportive relationships that aid in communication, strengthen self-esteem, and improve confidence ¹⁵.

Speech and language therapists in collaboration with individuals with aphasia, have highlighted the important role family members play in facilitating communication in the context of living successfully with aphasia ¹⁶.

References

1. Simmons-Mackie N, Raymer A, Cherney LR. Communication Partner Training in Aphasia: An Updated Systematic Review. Archives of Physical Medicine and Rehabilitation. 2016;97(12):2202-2221.e8. doi:10.1016/j.apmr.2016.03.023
2. Gordon C, Ellis-Hill C, Ashburn A. The use of conversational analysis: Nurse-patient interaction in communication disability after stroke. Journal of Advanced Nursing. 2009;65(3):544-553. doi:10.1111/j.1365-2648.2008.04917.x
3. Davidson B, Worrall L, Hickson L. Identifying the communication activities of older people with aphasia: Evidence from naturalistic observation. Aphasiology. 2003;17(3):243-264. doi:10.1080/729255457
4. Davidson B, Howe T, Worrall L, Hickson L, Togher L. Social Participation for Older People with Aphasia: The Impact of Communication Disability on Friendships. Top Stroke Rehabilitation. 2008;15(4):325-340. doi:10.1310/tsr1504-325
5. Howe TJ, Worrall LE, Hickson LMH. Interviews with people with aphasia : Environmental factors that influence their community participation. 2008;22(10):1092-1120. doi:10.1080/02687030701640941
6. Gialanella B. Aphasia assessment and functional outcome prediction in patients with aphasia after stroke. Published online 2011:343-349. doi:10.1007/s00415-010-5868-x
7. Code C. The quantity of life for people with chronic aphasia. Neuropsychological Rehabilitation. 2003;13(3):379-390. doi:10.1080/09602010244000255
8. Lyon JG. Communicative Partners: Their Value in Reestablishing Communication with Aphasic Adults. Clinical Aphasiology . 1989;18:11-17. Accessed December 3, 2017. http://eprints-prod-05.library.pitt.edu/62/1/18-03.pdf
9. Braun, M.E., & Liechty JA. Loss and Hope: Strategies for Coping with aphasia. 2014;(February 2006). doi:10.1310/83A2-EJTR-1HHU-7GWE
10. Shadden B, Shadden BB. Aphasia as identity theft : Theory and practice Aphasia as identity

theft : Theory and practice. 2017;7038(October). doi:10.1080/02687930444000697

11. Parr S. Living with severe aphasia: Tracking social exclusion. Aphasiology. 2007;21(1):98- 123. doi:10.1080/02687030600798337
12. Code C, Hemsley G, Herrmann M, Words K, Impact E, Laboratories WS. The Emotional Impact of Aphasia . 1999;6700(0):1-33.
13. Le Dorze G, Brassard C. A description of the consequences of aphasia on aphasic persons and their relatives and friends, based on the WHO model of chronic diseases. Aphasiology. 1995;9(3):239-255. doi:10.1080/02687039508248198
14. Howe T, Davidson B, Worrall L, et al. “You needed to rehab …. families as well”: Family members’ own goals for aphasia rehabilitation. International Journal Languae Communication Disorders. 2012;47(5):511-521. doi:10.1111/j.1460-6984.2012.00159.x
15. Simmons-Mackie N. Social Approaches to Aphasia Intervention. Language Intervention Strategies in Adult Aphasia. 2008;(March):290-317.
16. Brown K, Worrall L, Davidson B, Howe T. Living Successfully with Aphasia: Family Members Share Their Views. Top Stroke Rehabilitation. 2011;18(5):536-548. doi:10.1310/tsr1805- 536