Behavioral Expressions: How dementia affects your loved one

Alzheimer’s and other forms of dementia may change normal behaviors in your loved one, causing them to act out or behave in ways that are unusual. As a memory care professional, I often hear families say, “My loved one’s behaviors are getting worse” or ask, “How do I stop or prevent this behavior form happening?” While these thoughts are natural, we should also try to change the way we think and talk about our loved one’s behaviors. For example, your loved one does not have a behavior; they have a behavioral expression, meaning they have an unmet need.

Think about how we respond to babies when they act out. When a baby cries, we don’t say the baby is having a behavior. Rather, we take the time to figure out why they are crying — Are they hungry? Do they need to be changed? Do they need a nap? We should address our loved one’s behaviors in much the same way.

In order to understand our loved one’s behavioral expressions, it is important to understand how dementia affects them. Let’s explore three common symptoms of dementia:

  • Agitation is the most common behavioral expressions discussed with me by concerned families. Oftentimes, agitation is caused by too much stimulation. For example, your loved one may express agitation if they’re in a loud, crowded room or exposed to discordant background noises. Your loved may also express agitation when there is sudden change, such as a disruption to their daily routine or exposure to a new care partner. Ever wonder why programming seems to be the same on a daily basis at an assisted living or skilled nursing facility? Or why rotating assignments are frowned upon? Agitation could even be caused by an underlying medical issue like a urinary tract infection.

I always tell my staff and families dealing with agitation, “Don’t take anything personally and remain calm, supportive and positive.” When your loved one is agitated, try to reduce stimulation and noise. At Wingate Residences at Needham, we have what is called the Namaste Room. It’s a cozy, beach-themed room where residents can enjoy aromatherapy and listen to soothing sounds like crashing waves or the calls of seagulls. When residents are agitated, I bring them to this room and immerse them in this peaceful, soothing and calming atmosphere. Consider creating a similar safe space for your loved one. You may also try to redirect your loved one to a purposeful activity that will help them feel needed and useful. And as previously mentioned, maintain a consistent routine and schedule for your loved one. Lastly, strive to validate your loved one’s feelings, and remind them that what they’re feeling is normal and okay. Though these measures may not succeed the first time, be willing to try again.

  • Wandering is a popular behavioral expression seen by families prior to moving their loved one into a secured community, like The Neighborhood at Wingate. Your loved one may wander because they’re stressed or don’t know what time of day it is. They may also be hungry or thirsty, or need to use the bathroom. They could even be searching for someone or reenacting an old routine (walking the dog, picking children up, leaving to go home from work, etc.).

Wandering can be dangerous, but there are ways to help your loved one overcome this behavioral expression. First, check to make sure your loved one’s basic needs are met — ask them if they need to use the restroom, are hungry or thirty, or feel tired. It’s important to eliminate anything causing your loved one pain or discomfort. To prevent your loved one from wandering out of boredom, keep them engaged throughout the day. Scheduling a daily walk is a good way to keep them engaged. At one community where I worked, residents prone to wandering could join a daily walking club and walk up to three times a day. The walking helped everyone considerably!

  • Resistance to personal care is another behavioral expression that I often hear about, usually from healthcare workers. Your loved one may be resistant to personal care because they are scared. I can’t tell you how many times a resident has said, “Please don’t drop me” or “I don’t want to fall.” Your loved one’s fear may be caused by modesty. I used to interact with a female resident who wanted to keep every body part covered with a towel while showering, allowing us to only wash one part at a time. And I’ve had men refuse care from me because “A lady shouldn’t have to do this” or “You’re too young.” Your loved one may also have difficulty comprehending what’s being asked of them by healthcare workers, and they may be embarrassed that they can’t do things on their own.

So how do you help your loved one overcome resistance to care? Take your time and be patient with them. Always tell them what you’re doing beforehand, and work to meet their desires whenever possible. If your loved one is concerned about modesty, try covering them during bath time or perform a sponge bath instead of a shower; you may even try distracting them with a song. And remember to be flexible! Maybe the care will have to happen later but — you are in their reality, and sometimes you are on their schedule. I worked for a company whose motto when caring for residents with memory impairment was “Every day is Saturday,” meaning take your time and go with the flow.

Understanding how dementia affects your loved one will help you as a caregiver better understand what their needs might be and how to prevent certain behavioral expressions from occurring. As mentioned in my previous blog post, someone with dementia may have difficulty communicating, thus difficulty expressing their needs. As a caregiver, it’s up to you to determine and best meet your loved one’s needs in a calm, respectful manner.

If you have any questions or need advice with a loved one and their behavioral expressions, don’t be afraid to reach out. I am more than happy to offer ideas! There is always support for you, and you are not alone.

Living in their reality,