There is no fear in love...

In addition to my HISC role as a trainer of CAREGivers, I serve part time at a facility in our community, through which I have the opportunity to work with individuals who have been diagnosed with Alzheimer's or other dementias. While this role is not considered as part of my HISC job description, this service is vital to my role as it provides me the opportunity to learn new insights about how to train HISC and family caregivers about some of the difficult elements of caring for a person with dementia. Recently two interactions I had struck me as important because they related to the fear caregivers might encounter when communicating with someone who has late stage dementia. Focusing on our own fears can sometimes prevent us from being able to engage the persons suffering and help diminish their fears.

My role at this facility is non-medical, so I assume the nurse who offered the following advice assumed I would be out of my comfort zone and was trying to spare me from a difficult interaction. She said, “There’s someone else you can meet, but she has severe dementia, so just say hello and move on.” At first read, this statement might seem callous, but I find that this sentiment is quite common when encountering a person with dementia, especially if they are in later stages. In fact, admittedly, “saying hello and moving on” was the exact method I took with another individual until I read some helpful information from the book, “The 36-Hour Day” by Nancy Mace and Peter Rabins.

“Ben” is an older gentleman, who has been described as in the later stages of dementia. He can generally be seen wandering through the hallways mumbling to himself and then occasionally yelling out “what?” when you are speaking with someone else across the room. Most of the other residents do not engage him and the staff often works to manage his behavior by bringing him back to his room. At first, I followed suit. From my training, I knew to remove individuals from the environments that seem to be agitating them and because Ben did not seem to understand much of what people were saying to him, I thought less conversation worked best. If I did speak with him, I nodded or offered the occasional, “Ah okay,” repeating what he said in the first place. I thought I had been living in his reality. However, Mace and Rabins explain that often times, persons with dementia are unable to communicate logically, but that the feeling behind the awkward communication is usually accurate. Thus, they recommend that caregivers ask simplified questions to get to the root of the problem. So earlier this week, when Ben was talking about the boys who were getting into trouble, instead of saying something simple like, “Boys will be boys,” I paused and asked, “Ben, are you worried about the boys?” And Ben looked up and said, “Yes. I’m worried.” I continued. “Why are you worried about the boys?” “Because I’m not going to be able to pick them up, and they always get into trouble when I don’t.” I responded, “Well Ben, I’m sure someone else is picking them up, so there is no need to worry about the boys today.” “Really?” Ben asked. “Really,” I responded. “Okay.” Late when I was talking with someone else, I heard Ben talking in the background, “She said the boys are going to be okay. No need to worry. The boys are okay.”

There is so much we have yet to learn about dementia, that I can’t even be sure that Ben actually calmed down or even made the connection about what I said, or if he was just repeating me. And, even if this interaction was successful, there’s no guarantee that it will work like this again with Ben or with any other individual. However, what we can learn is that just as we learn that nonverbal gestures are often linked to an underlying emotion or need, mumbling and jumbled verbal communication can also be linked to an underlying emotion as well. So living in the person’s reality and going along with what they say might just be half the experience. Asking them more about their feelings might engage them even more and help to decrease fear they might be struggling with, which often times is greater than our own.