How We See Dementia: A Discussion with Dr. Marlene Goldman by David Dorian, 1T7.

My Opi (grandfather) has dementia, and has been in a steady cognitive decline for several years. Once a highly intellectual and fiercely independent man, he is now ushered between my parents’ car and backyard where he sits, and vacantly stares at the trees swaying in the wind. Many people might say that he is not the man he once was: he does not talk the same way, he cannot carry a conversation, he repeats himself constantly. This is true, he is different. But he is still Opi, and there is still very much of him left to love. Some might go on to say he has been stripped of his former self and robbed by a devastating disease. This is precisely the type of narrative, which reduces people to the victims of a disease and to the sum of their cognitive ability, that Dr. Marlene Goldman, an English Professor at U of T, is challenging in her writing.

Dr. Goldman’s early career focused mainly women’s studies, which led her to start the Women and Gender Studies program at U of T Mississauga. After writing a book, Dispossession, parts of which dealt with hysteria in the 19th and early 20th centuries, her research then focused on other forms of pathological modes of forgetting that also arose in the 19th century, specifically dementia and Alzheimer’s disease. The culmination of her current research will be presented in her upcoming book: Forgotten: Age-Related Dementia and Alzheimer’s in Canadian Literature.

Dr. Goldman speaks with passion and enthusiasm, which I was inevitably swept up in.

One of the main points that came up in our conversation, was how early on in her research on late-onset dementia, Dr. Goldman was struck by the overwhelmingly Gothic and apocalyptic nature of the language used to describe dementia and particularly Alzheimer’s. She quickly began to realize how pervasive the Gothic and apocalyptic narratives were in everyday thinking about cognitive decline. Even the scientific language that developed was rather macabre; with the development of terms like ‘tombstone’ and ‘ghost’ tangles when describing the pathology of disease. Recognizing the pervasiveness of Gothic language and metaphors, made Dr. Goldman realize the potential negative implications to our societal view of the disease. First, it encourages younger generations to view end of life cognitive decline as some terrible monster sitting in the shadows of old age, waiting to rip us away from our life generating fear. Second, the Gothic language creates a war mentality and an ‘Us versus Them’ effect that only distances us from our loved ones who are suffering. When we see disease as an enemy, the individual often carries that label, and gets swept up in the fight. Third, the emphasis on the disease model misrepresents dementia as a mysterious killer that is separate from the aging process. Fourth, by depicting it in this way, people believe there is a pill they can take or an antidote somewhere in a test-tube to reverse the disease, despite the fact that it is well known to be multi-factorial and tightly linked to our natural aging process.

Dr. Goldman believes that framing aging in such a way is iatrogenic, literally ‘sick making’ for both young and old because it contributes to the de-humanization of those who suffer from memory loss. We condescend to them or worse, ignore them. They become “ghosts” rather than remaining persons. I agree with her.

Part of the problem with fighting late-onset memory loss as if it were an infection is that unlike an infection, there will likely never be a discrete pill that stops the disease process in its tracks and allows someone to revert to their previous, healthy self. It is possible that some day we may able to slow down this process, or prevent it, but there will always likely be degrees of cognitive decline at the end of life. In reality Alois Alzheimer, the founding scientist and the origin of the disease’s name, saw it as indistinguishable from our natural aging process. As Dr. Goldman puts it “Even today we don’t have much that distinguishes Alzheimer’s from aging with the exception for the speed at which it happens. But that’s not how it is often represented.” Equally important, because we put so much emphasis on the disease, we let it define the end of life. As result, patients become conflated with the disease (the way Mary Shelly’s Gothic monster was conflated with Victor Frankenstein, its creator), and any remaining aspects of their selfhood that are left become eclipsed. At bottom, Dr. Goldman seeks to re-frame the way we see dementia by analyzing the common and often misleading Gothic and apocalyptic narratives often used to understand an illness once accepted as part of the life course.

It is important to note that Dr. Goldman does not seek to discount the suffering and pain that goes with dementia. She acknowledges that these things are very real, and hard to deal with. Rather, she hopes we can begin to accept and understand the aging process and the aging brain as a part of life. Instead of fighting aging, dementia, and death, we need to confront it honestly, without stigmatizing it and viewing it with Gothic horror and shame.

Midway through our conversation, the discussion began to evolve, become much more philosophical and contemplative. I guess that is what happens when you talk about things as powerful as life, death, and love. As I was telling Dr. Goldman about my experiences with my Opi she encouraged me to consider what it is about him that is no longer there, what remains, and what is it about him that I love. My Opi was a very intelligent man, he spent most of his days reading and discussing politics, art and science. This is how I knew him, and what I feel has been lost. Dr. Goldman encouraged me to consider all of the aspects of him that made him my Opi, not just his brain. As she put it: “what about the way he walked, the way he smiled, the way he drank his coffee? Perhaps it was something as simple as the way he crossed his legs”. These small details still remain, can be appreciated, and can help us remained connected. “Did you just love him for his brain? We certainly don’t define our humanity by our cognitive abilities in health, so why do we do this in death?” It is questions like these that can help ground us when we approach someone with dementia. We may not be able to connect in the ways we are used to, but there is still a beautiful connection to be had.

When I asked about how health care professionals can incorporate some of these idea in to their practice, the message was clear and simple. Something that every person from medical student to pre-schooler has heard and will hear 1000 times. “Do unto others as you would have others do unto you.” Treat the person lying in bed before you with empathy, kindness and compassion. “In 20, 30, 60 years, that person will be you,” points out Dr. Goldman. The words hung in the air for a moment while we both collected our thoughts.

I asked Dr. Goldman about her goals; she hopes to write a book that ties together some of these themes and ideas that is more accessible to the public. “Most of my writing has been academic, I’d like to write something that can speak to everyone”. Given the weight and complexity of these discussions I hope she is able to follow through. Her honesty and compassion will be well used.

As my Opi sits in our garden and warmly smiles when I come to sit beside him, I think about what will happen to my parents when they reach his age. What will happen to me? These discussions need to be had, as they affect all of us. Goldman has encouraged me to consider the way in which we choose to talk about end of life diseases as a whole.

Instead of shying away from some demon waiting in the shadows of old age, I hope we can learn to make peace with life’s course. I would rather choose to embrace my Opi, accept his new mind, and accompany him through this last stage of his life, rather than frantically search for answers, grow fearful of my own mortality, and allow what is left of him to be eclipsed by my own anxieties and fears. Rather than trying to restore what ‘once was’, we should celebrate it, and move on to ‘what is’.

Comments

Atara says:

I think this is a really insightful and moving piece. It’s really interesting to consider how language can affect the way we understand (and misunderstand) disease in general and dementia in particular. It’s so tempting, as you say, to turn a blind eye but this is totally a conversation that needs to be had. Thanks for this

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