Reframing Dementia
Being with someone who is experiencing dementia presents us with unique challenges and opportunities. If you have spent time with someone in this state, you know about the difficulties and there are many books published on the subject. What I am interested in are the barriers we ourselves can unknowingly add to the equation and the way that certain shifts in perspective can increase our ability to connect with loved ones beyond the typical interactions that we rely on.
The good news is that those with dementia have the capacity to experience joy and belonging.
I spent quite a bit of time with my grandmother throughout each stage of Alzheimers. In the early stages I found it confusing, frustrating, and sad. It brought up fears for my own mental decline. These difficult emotions are a very common and natural human response. During those first years I found that reading about, and understanding, the nature of dementia was immensely helpful.
As the illness progressed, the need for a different skill set became apparent.
I began to leave my own fears at the door and focus on what my grandmother was likely experiencing. This subtle mind shift changed everything. Her world moved very slowly and so I had to slow down physically and mentally if I wanted to be fully present with her. Because she could not communicate verbally, I began to sit and watch her more carefully. I would try to intuit her thinking for long periods of time and notice her nonverbal communication. I made sure to look her in the eyes when I spoke to her and not ask her too many questions but instead tell stories and recount memories. I held her hand, brushed her hair, and hugged her a lot. I drew pictures for her while she watched. And, most importantly, I got comfortable with silence.
I’m not suggesting that these last months were all sunshine and rainbows. There is a different kind of grieving that takes place when dementia is involved. In Barbara Karnes booklet How Do I Know You: Dementia at the End of Life she says, “Our loved one gradually becomes a person we don’t really know. With that comes not knowing how to interact with them… We must learn to accept our loved one not for who they used to be, but for who they are now. This is part of our grieving.” She goes on to say, “With memory loss the past is gone and the future is not contemplated; only the present has value.” And I would add that focus on the present moment is where the joy and connection take place.
There is a better way of looking at dementia. It is something I later learned is called person-centered care and is widely attributed to professor Thomas Kitwood who aims to promote that those with dementia should be engaged as “complex individuals inside complex social environments.” Person-centered care looks at behaviors as a way for the person with dementia to communicate their needs.
There are things we can do to soften the mental and emotional burden of caretaking. We can work on facing our own fears so that we don’t bring baggage with us, placing it unconsciously between us and our loved one. I was able to work on this more deeply in the years following my grandmother's death when I found the teachings of Emerson Lee. We must give ourselves love and grace as we navigate caring for someone who cannot give back to us in the ways they once could, being generous with ourselves as we navigate caring for someone who cannot give back to us in the ways they once could. We can also be generous with the love, patience, and acceptance we give to the person suffering, knowing that they are still there at their core.