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Stroke & Aphasia: Loss of Communication

The loss of the ability to communicate is one of the most difficult effects that stroke has on both victims and family caregivers. Aphasia.net provides some insight into the different types of aphasia and tips for caregivers.

Aphasia takes many forms. My grandfather suffered from a form of "it's on the tip of my tongue" aphasia. He understood you. He understood what he wanted to say. What he couldn't do was think of the words.

In other cases, patients feel as if others are speaking a foreign language. While patients cognitive skills are intact, they have lost the meanings of symbols. These must be re-learned in order for the patient to communicate.

From our experience I can tell you that aphasia can be even more frustrating than physical disabilities. If you are unable to walk, you can likely use a wheel chair. If you are unable to communicate you lose the power to tell people what you want and need and how you feel. Family member are left to make assumptions, sometimes wrong ones about what is needed.

Aphasia.net provides these "13 Strategies to help family members cope."

1. Join A Self-Help Group. There are support groups you can attend locally and ones that are on the internet. [More info on support groups]
2. Make the survivor feel like a contributing member of the family by involving them in family decisions and in their own recovery. (Survivors can work on rehabilitation independently with aphasia software)
3. Give the person time to talk. Don't speak for him/her.
4. Help them understand you, by speaking more slowly and speaking in short, clear sentences.
5. Use gestures (e.g., pantomime) to help the person with aphasia understand you.
6. Communicate through touch.
7. Sympathize with the frustration your loved one feels at not being able to communicate effectively. Just knowing that you know how they feel helps a lot.
8. You may need to assume more responsibility for starting a conversation and keeping it going. If a misunderstanding occurs, paraphrase or repeat more simply. A speech-language pathologist can show you ways to help with newly learned communication strategies. If an alternative form of communication is recommended, such as a communication board, you should be directly involved in the planning process.
9. Take an active role in therapy. You can also help to provide therapy at home. [Help for therapy at home]
10. The caregiver must care for themselves as well. You won't be able to provide care if you're exhausted and burned-out -- get enough sleep and keep up your relationships with friends and relatives..
11. Keep up with leisure activities. Consider this necessary rather than selfish.
12. Avoid making other major life changes, like moving, at this time.
13. They may fear failure. This can cause them to avoid social interactions. Group therapy (with other aphasics) or online support groups can provide a safe nvironment in which to gain confidence. Software-based therapy can provide an opportunity to fail without any embarrassment. (Only the computer knows if he/she makes a mistake. )

posted by Sully @ 9/17/2005