Family Caregiver Alliance

Guidelines for Better Communication

Communicating with a loved one with a brain disorder can indeed be challenging. Finding the right words and getting your point across are difficult under normal circumstances. This difficulty is often compounded by your role as a caregiver. And although there are no easy solutions, following some basic guidelines should ease communication, and lower levels of stress both for you and for the care recipient.

  1. Make Sure You Have Their Attention: Statements and questions made to adults with a brain impairment should almost always begin with an identifier. This doesn’t necessarily have to be the person’s name, but should be a common greeting used between the two of you (very often, a term of endearment will work). For example, start a sentence with “Mom,” then pause. Wait till you have her attention before continuing, especially if there is a great deal of background noise. Very often, it is difficult for impaired individuals to understand when people are talking around them, or to them.
  2. Speak at Eye Level and Enunciate. In addition to getting the individual’s attention, you also need to retain that attention. Before beginning even a short conversation, get to his or her eye level. If someone is in a wheelchair or lying down, pull up a chair. Be sure to retain eye contact and try not to occupy yourself with other things while you’re engaged in conversation. Enunciate your words so that each is differentiated from the other.
  3. Use Simple, Direct Statements. When communicating, statements should be short and descriptive. Instead of, “Mom, I would appreciate it if you finished your breakfast and got ready because we’re running late,” try, “Mom, please finish up so we can leave on time.” The latter may sound curt, but it needn’t take an angry or frustrated tone. It is simply a direct way of communicating your needs. And be sure to use sentences containing short-action increments. Rather than, “Please take off your shirt,” try “Can you help me unbutton the front?” “Good.” “Now can you pull your arm out of the sleeve?” “Thank you.” Etc.
  4. Ask. Try Not to Tell. Even when parenting is your formal role — you are taking care of an adult child, for example — keep in mind that you are still communicating with an adult. And most adults like to be asked to do something, rather than told what to do. As such, utilize the three magic words: “can,” “will” and “please.” “Can you stand up so I can fix your dress?” “Will you sit in this chair?” “Please join me in the living room.”
  5. Move Closer. If you are talking to a loved one and they can’t hear what you’re saying, try moving closer to the person rather than raising your voice. Be respectful of a person’s “personal space” (or distance at which she/he likes to communicate). But remember the ultimate goal: making yourself understood.
  6. Talk Around Difficulties and Use Gestures. Brain-impaired individuals have very often lost part or all of their “sensory repertoire”—the sense of everyday things, people and places. If your loved one cannot remember a person or place, try to avoid thinking or expressing negative feelings that convey your frustration or worry. Instead, talk around the word by using a vague pronoun reference, e.g. he, she or it. And use (as well as listen to) gestures. A person with a brain impairment might be telling you about a house down the street, but may have lost the word “house.” He may instead put the tips of his fingers together in the shape of a roof. Suggest words that seem appropriate and be receptive to feedback. If you truly get stuck, focus on the emotion being expressed. “It sounds like what you saw was beautiful.”
  7. Talk with, Rather Than About. Persons with brain impairment very often get pushed to the side during conversation. People, even professionals, may feel uncomfortable about talking to an impaired individual because they’re not sure what will be understood. As a caregiver, make the care recipient the focus of your conversation. Encourage others to talk with your loved one, rather than about them. If someone continually refuses to talk directly to your loved one, a gentle reminder is appropriate. Additionally, it is okay for caregivers to cover more technical questions with a professional before or after your scheduled appointment time.
  8. Listen. A simple point, but one not to be overlooked. You know your loved one better than anyone else; use this to your advantage. As a caregiver, very often your most important role is as a listener. And listening can be done even if your loved one does not speak; you can communicate your interest with as little as holding their hand.
  9. Give Yourself Plenty of Time. Time, and the freedom to take your time, is a necessity. For example, allow an extra 15 minutes for travel, enough to assist your loved one in getting to, from, into and out of the car. This is especially important if the care recipient is particularly resistive or hesitant to participate in her or his own care (taking a shower, for example). Try not to get into a power struggle and maintain your other communication skills. When brain-impaired individuals are rushed they tend to get stressed. And stress very often makes people less amenable to care.
  10. Try, Try Again. A little trite, but important nonetheless. If, as a caregiver, you find yourself in a power struggle with a loved one, it is okay to let go. Come back in five minutes. If you are assisting your parent in going outside, for example, and they resist putting on a coat, give in. Engage in another activity for five or ten minutes, such as putting on your own coat, and then come back and try again. In that five or ten minutes, your loved one may have forgotten why it was so important to resist in putting on a coat in the first place, and may give in to your request.

Q: The expenses of caring for my dad are becoming overwhelming. Surely there is some sort of government support to help me with reducing the costs of all his care? Where do I start?

A: Unfortunately, there is no system to help pay for the expenses of long-term caregiving unless your dad is considered low-income. If he is, the Medicaid system might be able to help you. Since this program is different in every state and the qualifications are different in every state, you would start by calling your Area Agency on Aging and asking them for the number of your local Medicaid office.

There are also ways that your dad could legally pay you for being his caregiver, if he can afford it. For that, you would do well to consult an...

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Top Tip

Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.

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