Caregivers can expect five common emotional reactions from their loved one living with dementia, says Teepa Snow, a dementia educator with 40 years of clinical experience: anger, sadness, abandonment, fear, and purposelessness. Understanding what leads to these emotions and the feelings that trigger them can help family members handle and prevent distress in their loved one.
In this “Ask the Dementia Expert” episode, Snow shares four important steps to take when communicating with a distressed person with dementia. Read highlights below or watch the full video.
Teepa Snow: When someone you really care about who is living with dementia is showing you signals that they’re in acute distress, what they’re saying is, “My world is not working for me.” It could be spoken, or shown through movements.
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What it tells me, someone who’s been around dementia for a long time, is that I have someone who feels very threatened. I have someone who doesn’t feel supported or cared for, even though what I’m trying to do is provide support and care. The primitive brain — the brain that protects them from harm — is being alerted.
As a family member, the most important thing to do is to pause. What they’re sending as a message is that what you’re trying is not working. Their message to you is, “I need you to stop.”
I want to get in what’s called a supportive stance and turn my body. I want to make it so I’m not right in front of them, because when I’m right in front them, I’m trapping them. When I’m right in front of them and I have my hands on them, I’m saying, “I’m the boss of you.” The more we allow ourselves to get distressed, the less capable we are.
As quickly as I can, I want to sort through: What’s the emotion they’re showing me, what message are they trying to send me?
Now, let me just say this, we have trained professionals who struggle to identify this. To expect families to do it without practice and without support, I think we’re being unrealistic. But we can notice when things are starting to build up.
Take a step back and ask for help, because the last thing we need are two people in distress, or one person hurting another person without being aware of it. We want to get to a place where we stop doing things that don’t work and start making different choices, but it’s not easy to change habits.
Kara Lewis is a content writer at A Place for Mom. She’s worked in writing, editing, and creative strategy for several years, most recently at Andrews McMeel Universal, Hallmark, and Gannett Media. Her writing has appeared in Bustle, Alma, and The Kansas City Star, among other outlets. She has won awards for digitally conscious journalism, investigative reporting, magazine writing, and poetry.