A COVID-19 resource for caregivers

Issue #5 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.

“A person with dementia is not giving you a hard time, they are having a hard time.” – Unknown

It is important to understand that the individuals living with dementia are doing the best they can to make sense of a situation and may not be able to voice their thoughts and feelings appropriately. The ability to communicate verbally is affected early on in dementia and becomes harder as the disease progresses. The need to communicate never changes for someone with dementia, it is how they can communicate that does change. Behaviors become the main form of communication for persons with dementia. As a caregiver we should remember that our loved ones are trying to communicate with us, and we need to work on discovering the underlying message.

Agitation:

•  When a person with dementia is agitated, upset, or angry they may say mean things or make personal insults, which can make it hard for a caregiver to stay cool.
•  As the caregiver, try to stay calm. Persons with dementia will always be able pick up on your tone of voice, feelings and body language, and a lot of the time will mirror your behaviors.
•  One approach to handling agitation is to validate your loved one’s feelings: Say, “You seem to be upset.” Then you may be able to talk with them about the issue. Using validation phrases like, “Tell me more” or “I’m sorry that happened.”
• Resist the urge to argue. If agitation escalates, back off. Often, when someone with dementia becomes upset, well-meaning caregivers crowd around to try and help which can be confusing for the person, and they may become fearful as though they are being “ganged up on.” One-on-one is a better approach. Ensure your loved one is safe and step away for a moment to allow him/her to calm down. If you get too close and the situation escalates, they may lash out if they feel threatened.
• Once they have calmed down, do not scold them. Instead, help them to focus on something comforting like: a favorite song to listen to, familiar pictures to look at, a sweet snack, or a favorite animal to pet.
•  Remember that agitation is a single moment, and they may not remember what happened or what caused them to be upset.

Determining the cause of the agitation:

•  Look for patterns and situations that seem to cause agitation so they can be avoided.
• During critical times the daily routine and environment changes, which can cause confusion and insecurity. Quickly establish a new daily routine and give them reassurance and time to adjust as the new routine becomes more familiar.
• Overstimulation can cause distress: Is the TV on, the phone ringing, and too many people talking at once? Reducing noise may help your loved one to stay calm.
• Discomfort can cause agitation, especially if the person with dementia cannot explain the problem. Do they need to go to the bathroom? Are they hungry? Are they cold and need a sweater?
• Are they bored? You may enjoy sitting and watching a movie, but the person with dementia may not be able to follow the story and become frustrated. Maybe the activity they were doing is too hard. For example, working on a 500-piece puzzle can be too difficult, a 50 or 75-piece puzzle with a familiar design can be much easier.
• Consider how you interact with your loved one with dementia. Are they trying to go outside and being told no? Are they rummaging in the kitchen and being told to leave the room or it is not safe for them to be in the kitchen alone?
• Just like anyone else, the person with dementia wants to make decisions for themselves and be independent. The focus for the caregiver may be safety, people with dementia don’t recognize their loss of skills. A better way to handle those behaviors is to distract or redirect the person to another activity rather than saying “no” repeatedly. Consider a short walk outside or sitting on the back porch. Rummaging in the kitchen could mean hunger or boredom. No one likes to be told no, so it makes sense that this would cause frustration or anger.
• It takes creativity to determine the cause of the behavior, and what works today may not work tomorrow and vice a versa.

The most important thing you can do to help your loved one is to take breaks from caregiving and take care of yourself! While there are many rewards to caring for your loved one with dementia, there are also many challenges. Making your health and well-being a priority is the only way you will be able to provide the best care you can for your loved one.

The West Center presents this information with the support of the following organizations: Dementia Friendly Fort Worth, Alzheimer’s Association, Area Agency on Aging/United Way, and Tarrant Churches Together