“’This is my sister,’ Mom said, introducing me to another resident at the facility. It doesn’t matter, I told myself. At least she still knows that I’m family.” (Journal note, 2003, p. 85, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion)
I didn’t realize it at the time, but substituting an intended word for another that has a related meaning, in this case, “sister” instead of “daughter,” is one symptom of aphasia. Aphasia is the loss of the ability to understand, listen, write, read, or speak. It is caused by damage to the part of the brain that contains language. This part is typically the left half of the brain. When a loved one has Alzheimer’s, aphasia begins gradually and varies, depending on how much the brain is affected by the disease.
Here is a list of some difficulties associated with aphasia:
- Coming up with the exact words to say;
- Switching sounds within a word; e.g., wishdasher for dishwasher;
- Using made-up words or words that sound similar to the one they want; e.g., “I have a pint here,” instead of, “I have a pain here.”
- Having difficulty putting words together to form sentences;
- Having difficulty understanding what others are saying when there is background noise or when in a large group;
- Putting together real words with made-up words fluently without making sense;
- Misinterpreting jokes;
- Having difficulty understanding number concepts; e.g., counting money, writing checks, adding, subtracting;
- Having difficulty understanding long or complex sentences;
- Reverting to a primary or native language, one learned from childhood.
Feelings of frustration at the inability to communicate may lead your loved one to experience embarrassment, anger, or even to become depressed. I wish I had understood this condition better while caring for my Mom. I suggested to my siblings, that when they were speaking long distance by phone, not to ask Mom complicated questions, but ones that she could answer “yes” or “no.” I also recommended that they talk about their lives and what their children were doing.
What can you do to communicate better if your loved one has aphasia? Here are seven recommendations, based on a communication skills program for caregivers of patients with Alzheimer’s, developed by Danielle Ripich, Ph.D., in 1995. Dr. Ripich devised the acronym “FOCUSED” to explain and teach these helpful ideas.
F = Face-to-face: Get your loved one’s attention before you start speaking. Get to their level and maintain eye contact as much as possible. Watch their body language. Keep your voice at a normal level unless they ask you to speak up. Minimize or eliminate distracting background noise, if possible.
O = Orient to the topic: Repeat key words and use names of objects and people rather than pronouns. Use hand signals, pictures, and facial expressions.
C = Continuity of topic: Use signals when you are starting a new topic. Keep the conversation going by saying, “Tell me more.” “That’s great!” Praise all attempts to speak and downplay any errors. Avoid insisting that each word be produced perfectly.
U = Unstick any blocks: Acknowledge the frustration your loved ones feels at not being able to communicate what they want. Ask, “Do you mean…?” Encourage them to use drawings, writing, or gestures if you don’t understand what they are trying to say.
S = Structured questions: Use “yes” and “no” questions rather than open-ended questions. Or try asking questions that require a choice between two items or possibilities; e.g., “Would you like a drink of orange juice or cranberry juice?” Do not test them by asking questions such as “Who is our current President?”
E = Encourage interaction and independence: Keep up normal everyday conversations by taking turns talking. You may need to initiate the conversation and keep it going, but give your loved one time to talk. Resist the urge to finish their sentences or offer words unless they are having obvious difficulty. Don’t speak for your loved one. Avoid being overprotective.
D = Direct short sentences: Keep your communication simple, but don’t “talk down” to your loved one as if they were a child. Give one direction at a time. Reduce your rate of speech and use natural gestures to help them understand you.
Communication connects us as human beings. Your body language lets your loved one know that you have heard them, especially if you nod and smile. They may not remember the conversation you had an hour ago, a day, or week ago, but they do enjoy being in the moment with you. Your efforts to keep your loved ones engaged in communication will certainly help keep them engaged in life. Lastly, remember that one of the best forms of communication is touch, a tender hug to reassure them that they are loved, along with the words, “I love you!”
May you find peace, patience, and joy in your caregiving today and everyday!
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Teepa Snow is a well-known dementia care and training specialist. In this short YouTube video, Teepa teaches a group of caregivers important phrases to learn when caring for someone with dementia. https://youtu.be/KKejCymVS2Q
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What’s the best advice you’ve ever received? The “SoulPancake” website interviewed 39 people, ages 5 to 105. Here’s what each of them said in answer to this question: https://youtu.be/ZfsyrNKhNTE
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I’d love to know what your best advice is for other caregivers like yourself. Please e-mail me at: Vicki@CaregiverFamilies.com.