A COVID-19 resource for caregivers

Issue # 2 of 10

The James L. West Center for Dementia Care has launched a Tool Kit for lay and professional caregivers who are providing support to persons with dementia during this critical time. To receive ongoing information, contact caregiver@jameslwest.org.

As we are facing changing routines and feelings of unrest, persons with dementia can be particularly confused and communication can become more challenging.
You may notice changes in persons with dementia mental, physical and emotional health, as well as the way they communicate and connect with others. Those affected by dementia have trouble thinking, recalling or reasoning clearly, which can make communication difficult and frustrating. However, with patience and understanding, you can improve your communication challenges while enhancing the overall quality of your relationship with your patient, client or loved one.

Here are some best practices for communication:

• Give simple, one-sentence explanations or instructions, avoiding adjectives or detailed descriptions. For example, “Sit here” (while patting the chair) versus “Go sit down on the brown leather chair.”
• Repeat yourself using the same exact words; otherwise they hear something different. If they still don’t understand you, wait a few moments, then try rephrasing.
• Speak slowly & clearly and allow plenty of time for comprehension and/or a response. Give your loved one time to understand what you are saying. Also, individuals with dementia need more time to process information and articulate their thoughts.
• Go to their world. Shape the way you communicate in a way that is most relatable to them and their life experiences. It is OK to use therapeutic stories for the benefit of your loved one. For example: “It’s raining, let’s stay home today.” Or “Yes, its cold & flu season, we are going to stay home and stay healthy.” Then, simply change the subject.
• Use distractions. A sweet snack, pictures of family and past vacations or their favorite music can help you direct the individual’s attention away from a source of agitation or tension.
• Actively listen. Maintaining eye contact and focusing on them as they speak shows them you care about what they are saying and are engaged in the conversation.
• If your loved one voices concerns, don’t minimize their feelings. Try to agree with them and voice understanding such as, “I know you are scared. It’s hard when we don’t have all the answers.” This validates their feelings and shows you are on their side. If changing the subject isn’t working, you may want to suggest praying together or doing something that your loved one finds comforting, such as petting their cat/dog, or having a cup of hot tea.
• Understand that the words they choose might not be what the message is about. Try to get to the root of what they’re saying without getting distracted by how they are saying it. What are the feelings and emotions they are expressing?
• The person with dementia may be upset but unable to express his/her feelings. You may notice increased restlessness, fidgeting, cursing, or repetitive questions. If your loved one becomes anxious or agitated, first calm yourself down.

Then, given him/her some space to relax and regain composure. Try to keep to the usual daily routine as much as possible.
Consider taking a walk outside, listening to some music, or enjoying a favorite story.

• Use gestures or demonstrate the task/instructions so they can mirror your actions.
• Watch your tone of voice and body language. People with dementia can pick up on your nonverbal cues, such as posture, facial expressions and mood. The person with dementia may not understand what is going on, but they will pick up on your feelings.
• Avoid watching the TV news or constantly looking at social media if it is adding to your anxiety. Keep this away from your loved one with dementia as well, as he/she may not be able to understand what is real and may become frightened.
• Reassure your loved one they are safe. Simply saying, “We’re safe here” and giving a smile and a hand squeeze may be what’s needed, then you can change the subject.

Alternatively, here are some habits to avoid:

• Avoid words like “crisis,” “pandemic,” state of emergency” or other words related to the COVID-19 news. These can evoke fear in your loved one. Keep conversations about current events to a minimum if the person with dementia is in the area.
• Don’t argue. Disagreeing can cause unnecessary anger or agitation. Instead, your favorite word should be “OK.” It does not mean you agree, it means, “I hear you.” Keeping the peace is more important than being right.
• Don’t try to reason or be rational. Keep in mind that dementia affects their ability to reason logically.
• Don’t question their memory or use the word “remember.” It reminds them that they forgot.
• Don’t judge or criticize. Try to understand where they are coming from.
• Don’t take their words and actions personally. Your patient, client or loved one may be lashing out at you because they are frustrated with themselves.

For more communication tips click here to watch a video on how to talk to someone with dementia.

The West Center presents this information with the support of the following organizations:

Dementia Friendly Fort Worth – Alzheimer’s Association – Tarrant Churches Together – Area Agency on Aging/United Way

Looking for more coronavirus and dementia caregiving-related readings? Check out our dementia care blog, featuring articles like Managing Dementia During Critical Times, and sign up for our e-newsletter to receive additional resources and COVID-19 updates.