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.
