Does Dementia Exist in the Present Moment?
I recently took part in a group discussion on art and culture at the Peabody Museum of Archaeology and Ethnology at Harvard University. Observing Native-American art and artifacts , the participants touched on themes such as the spirit world, the negative impact of European settlers on Indian culture, and the use of Jungian analysis on the interpretation of symbols that were painted on totem poles. This discussion was so lively and provocative that other groups of visitors to the museum began gravitating towards us, to better hear people share their insights.
None of those who gathered around us picked up on the fact that people with dementia were leading this discussion and that the group comprised men and woman who live in a dementia-specific residence in Boston, Massachusetts. Most of the participants have what clinicians would call “mid-to-late stage” dementia —having lived with symptoms from anywhere from seven to fifteen years. They are people often thought of and described as “lost souls, gone forever, and detached from reality.” With this perspective, it shouldn’t be a shock that society has found it perfectly acceptable that millions of people living with dementia have been extricated from their communities and placed in locked “memory care units.”
The experience I had at the museum was not a revelation to me. Over the last several years I have had the privilege to assist in coordinating such programs for people living with dementia at various arts and culture institutions, including poetry cafés, the cinema , interactive theatre, the circus, and music halls. Time and time again, I bear witness to the incorruptible self-hood that remains, regardless of the diagnosis or whatever stage in the disease process that is often used to define a person. What do I mean when I use the term “self-hood?” I am talking about a person’s essence—some might call it spirit—that was there at birth and will remain throughout. This essence, when compared to a point in an individual’s past, can seem to have undergone a major change/shift when observing the person’s outward manifestations of dementia’s degenerative impact. Looking through this narrow prism—one in which we compare imprints of our perception from ten years ago to one’s from the present day—is a superficial exercise that negates the ability to witness the immense life force and potentiality that exists in the present moment.
As a society we need to catch ourselves from categorizing, labeling, and infantilizing people living with dementia. The stigma of a diagnosis has led many to retreat from friends, favorite hobbies, careers, and their local community—not because they cannot function within these interests—but because of an irrational fear by the care community itself, whose motives are nonetheless genuine but come from a misguided compassion. Misguided compassion occurs when the person living with dementia has their day-to-day tasks and responsibilities taken away or done for them; even if just months before this person was addressed as “Doctor” or “Professor,” or “Coach.” Now they are seen as someone whose sole purpose in life is to be under the banner of care. It is very difficult to reverse the process once it begins—the reason being that many loved one’s and professional care staff don’t realize there is another way, one in which the person living with dementia remains doing the things they always did, albeit within a physical and social environment that is enabling instead of disabling.
John Zeisel, my colleague at ARTZ, has a saying whenever we are in the midst of an arts and culture experience: “There is no dementia in the room!” I believe this to be true. When people living with dementia are invited to participate in society, not as mere observers, but contributors, something special takes place—personhood emerges and the label/diagnosis recedes into the background. If this can be repeatedly accomplished at the museum or at the cinema—people opening up and expressing themselves—why can’t we aim to do it in every facet of daily life? When a person is fully present, observing a painting or holding their granddaughter, they transcend time’s arrow—they exist outside of it—the damaged hippocampus has no role to play here. For in this instance everything is as it should be—no right, no wrong—it just “is.”