Aphasia: Practical Guide for Family and Friends

Patients with aphasia experience a sudden change in their personal, family, work, and social life

The family plays a central role in the patient’s progress and rehabilitation. Changes occur both in the patient and the family that affect their stability.

The patients’ inability to express their ideas, feelings, and desires makes them feel insecure and helpless, as their need for social communication is not fulfilled, either within the family or in general. Therefore, guiding, educating, and preparing the family to support them in a comprehensive way is important.

These are some of the guidelines to keep in mind when communicating with people diagnosed with aphasia:

• Maintain a natural and adult-appropriate type of conversation. Do not treat them like a child.
• You should not speak for the patient unless it is absolutely necessary.
• Carry out normal household activities: watching television, eating at the table, etc.
• Allow the patient to be as independent as they wish and as their limitations allow.
• Simplify language by using short and uncomplicated sentences.
• Talk to them about concrete and real things that are within their visual field at that moment.
• Make sure the person understands what you are saying by asking related questions.
• Include the person with aphasia in conversations.
• Ask for and value the opinion of the person with aphasia, especially regarding family matters.
• Include the patient in the activities of other family members, for example by talking to them about what you are doing
• Maintain the patient’s interest in using language throughout the day through hobbies, games, and small tasks that can serve as conversation topics.
  
• Encourage any form of communication, whether spoken, gestural, pointing, or drawing.
• Allow the person with aphasia all the time they need to communicate.

How should I speak and interact with my relative? Advanced stages

• The person with aphasia looks at the speaker’s lips. Stand in front of them; it helps them understand.
• Use short sentences.
• Use gestures for verbs and point to the objects, places, or people being referred to.
• If you want them to do a routine task, always give the same instruction and point to the pictogram if they already use one. If the task is new, perform it step by step while explaining each step verbally so they can imitate and learn.
• Use a visual chart showing each step of the new task in order. Don’t forget to explain each step out loud; this helps expand their vocabulary.
• You can use a color code and numbers to help understand what comes first and what comes next.
• It is very helpful to carry a small laminated note in the bag and in the car (so it is always at hand) that says: “I have speech difficulties. These are the names and phone numbers of my family members you can contact. Thank you for your help and understanding. Name and address of the patient.”

How should I speak and interact with my relative? Always use the same expressions

• Even if they have difficulty understanding verbal language, it will help them if the instructions you give are always the same and follow the same structure.
  • Example:
    • Set the table
    • Put the spoon
    • Put the napkin
• Do not make changes; in other words, try to always say it the same way. If on another day you say, “Set the table and the cutlery…” it will confuse them.
• Encourage them to repeat the phrase or instruction with you as they carry out the task; this will help improve their understanding of the instruction.
• When they say or do something well, let them know with a “Very good…”, “I understood you very well” or “You expressed yourself very well”. Recognition in front of the family is a great encouragement.
• Do not forget to make a gesture that represents the action. Always use the same gesture for each action; this will improve their understanding of the task.

How should I speak and interact with my relative? Use written messages

• If they need to follow written instructions, try to use:
  • Short sentences
  • Direct ones
  • In capital letters
  • In large font size
  • Accompanied by a drawing or photo that helps with understanding

How should I speak and interact with my relative? Keep in mind

• If you are going to change the topic of conversation:
  • Make a gesture or a signal
  • Articulate clearly and speak more slowly
• Speak using short and simple words. Words with more than three syllables may be difficult
• Do not use passive voice or very complex sentences

How should I speak and interact with my relative? Treat them as an adult

It is relatively common that when we interact with a person with severe aphasia, we use expressions we would normally direct to a child. This becomes more frequent when they have limited comprehension and limited expression.

It is important that:

• Speak in a normal tone and without exaggeration
• Do not treat them like a small child
• Do not speak too loudly; they are not deaf
• Speak slowly and articulate clearly
• Let them know your approval when they have done things well!

How should I speak and interact with my relative? What to do if I haven’t understood them?

• Sometimes it is difficult to understand what a person with aphasia is trying to express
  • Stay calm
  • Look them in the eyes
• Ask yes-or-no questions to narrow down the topic
• You can use a simple communication notebook. Sometimes a small whiteboard is useful for quickly writing, erasing, or drawing
  • Example:
    • Is it about the house?
    • If they say “yes,” start naming nouns related to each room, mentioning different parts of the house… living room?… kitchen?… etc.
• If you have a task process chart, point to it as you go along until you identify the issue
  • It may be a personal issue or a desire to communicate something personal to those around them
  • Does something hurt? Make a gesture of pain and point to parts of the body
• It is helpful for each person to have a notebook with images and words related to their social and family environment and routines. Photos of their home, phone, family, pets, hobbies, activities, schedules, favorite foods and drinks can help them communicate with others when needed

How should I speak and interact with my relative? Talk to them about everything and encourage them to take part in activities

• Sometimes having someone around who barely speaks makes us stop talking to them. It’s something unconscious, but we must avoid it
• Say your thoughts out loud while doing a task
  • Example:
    • I’m going to make coffee
    • First, I take the coffee maker
    • I fill the container with water
    • I add two spoonfuls of coffee… etc.
• You should tell them what you did at home and at work, then ask them about their day.
• Ask for their opinion on household decisions: Do you think we should buy…?
• It is important for the person with primary progressive aphasia to stay physically active by exercising regularly and/or walking daily
• Encourage them to do activities that motivate them, such as listening to music, painting, cooking, listening to audiobooks, or watching movies
• It is good for them to have responsibilities at home. Activities such as taking care of plants, setting the table, making the beds, organizing photographs or the toolbox, for example, help exercise many cognitive areas like organization, planning, attention, and memory

Caregiver support

Having a relative with aphasia has a significant emotional impact.

The caregiver faces a change in their life plan that requires an adjustment to the new situation. The caregiver may experience symptoms such as anxiety, insomnia, and depression.

On the other hand, it is common for the caregiver to try to handle the situation alone. They often don’t talk about it with friends, and sometimes even hide the situation from them.

We recommend:

• Plan your leisure time. You should have time for yourself; don’t feel “guilty” about it. If you have moments of rest, you will be in a better condition to care for your relative
• Ask your relatives for help. Don’t try to do everything yourself. Rely on your network of friends and family to better organize your caregiving and free time. It is a long-term illness, and your relative will become increasingly dependent
• Seek psychological help or visit your family doctor if you feel sad, anxious, or overwhelmed by the situation. It is important to recognize our feelings and accept the situation. In this process, which is not easy, professional help and/or interacting with others who are in the same situation as you can be very helpful
• Talk to friends and keep your social network active. Seek help from support organizations
• Remember, IF YOU ARE WELL, YOU WILL BE ABLE TO HELP YOUR RELATIVE BETTER

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