We have created the dehumanizing stigma that accompanies dementia by choosing to persist in using a model to explain dementia that is not only flawed but illogical. Stigma is fueled by fear, and fear grows where there is no understanding. Only through changing the way we approach dementia—by giving up the model that is failing us—can we understand it and defuse the stigma that surrounds it.
Seeing dementia as a disease leads to stigma
At present, we still talk about dementia as if it is a disease, although it is really a condition, one in which people progressively lose certain cognitive skills.
Seeing dementia as a disease leads us to apply the biomedical model. We refer to people as having “developed” dementia, and then begin to look for and catalog symptoms that we can identify to demonstrate its presence. Finding no physical manifestations, we label what we can find: changes in their behavior. We call these “symptoms” dementia-related behaviors (i.e. wandering, exit-seeking, sundowning, and combative behavior). Having identified a disease and its symptoms, we need treatment and a cure, and pursue both, yet currently we have neither. And so, having no treatment at hand to help people return to their normal pre-diagnosis selves, we substitute an array of psychotropic and mood-altering drugs that do nothing more—and nothing less—than mute their ability to express themselves and their reactions to the changes that are occurring within them.
Dementia is a condition we experience, NOT a disease
And, we do all this despite knowing that dementia is not a disease but a condition that can result from a variety of diseases and any number of life events, even simply from lifestyle choices; and despite knowing that all humans in all stages of life and emotional development display exactly the same behavioral “symptoms” we attribute to dementia. But most egregious of all, we persist in using the biomedical model and prescribe psychotropic drugs for treatment despite knowing that those whom we have diagnosed are losing the very skills that would enable them to protect themselves.
We need an experiential model for dementia, rather than a biomedical one
What if, instead of a biomedical model, we applied an experiential model? What if we thought of people as experiencing the condition of dementia rather than developing it? If we looked at them from the perspective of what they are experiencing—the loss of certain skills they’ve been accustomed to using—it would follow that we as humans have predictable emotional reactions when we suddenly find ourselves unable to do something, or confused by something, and that our subsequent behaviors reflect how we feel. Further, using an experiential model is not new. It is the model we use to raise children, who are also experiencing changes in their emotional and cognitive abilities.
Whether we consider ourselves to be the product of a lengthy evolutionary process or of a divine and compassionate Hand, we have been endowed with various cognitive skills. If we look at these skills from the perspective of how they help us function (and how dementia impacts our functioning), they fall neatly into three contrasting pairs. We have two sets of skills for thinking (rational thinking and intuitive thinking), two sets of skills for experiencing (memory skills and interaction skills), and the ability to function both attentively and on autopilot (the ability to use our attention skills, or not). Unfortunately, we look at these skills and assign values to them, saying that some are better than others.
It is true that three of those skills (rational thinking, memory, and attention) are more helpful in a fast-changing technological society, but we err if we conflate the current usefulness of a skill with its value, or assume that the more visible a skill is, the more valuable it is. To do so is to denigrate either the evolution process or an all-knowing God, and to be illogical as well. Whatever or Whomever oversaw the process of our arrival at our current existence, we stand here now with a bicameral brain and six very distinct and discretely useful cognitive skill sets.
Regarding our thinking skills, we are endowed with not only what is commonly termed our rational thinking processes, but also our intuitive thinking processes—two adjectives that have become laden with connotation and inaccurate value differences in our culture. We might do better to refer to them as System 2 and System 1, as Daniel Kahneman does; or as the emissary and the master, as Iain Mcgilchrist does; or as tools and gifts, as Einstein is reputed to have described them. But no matter what terms we apply, the simple fact remains: we have two profoundly different thinking processes: the former, which is both visible and useful in a technological society such as ours, and the latter, which empowers the first but is less visible.
Our primary thinking skills are the intuitive ones (and are the skills kept in dementia)
Yes, it is our intuitive thinking processes that are our System 1, primary thinking processes—the master. And it is our rational thinking processes that are secondary—mere tools or emissary. Without intuitive thinking—the gathering of unfiltered information (inductive thinking)—there can be no deduction, and there can be no survival either. We seem to confuse the usefulness of the steering wheel with the necessity of the engine. And let’s be careful to note that in dementia it is those secondary thinking skills, the tools, that we lose.
Regarding the cognitive skills that enable us to experience, we have both memory skills for accessing knowledge of the past (which enable us to reminisce, but more importantly—to interpret the present) and our interactive skills that grant us awareness and existence in the present. Have you ever wondered why we are irritated when someone tells us the same story twice, or why we are embarrassed when we find that we have repeated ourselves? It is because our culture prizes memory skills, not awareness or observation skills. Our education system rewards those with good memory skills from kindergarten through doctoral program, not those who are well equipped to experience or ponder. We admire achievers, not monks. And again, it is only our memory skills that we lose to dementia, not our awareness or ability to experience the present.
Finally, let’s consider our attention skills—the ones we put to use when we want to use rational thinking or memory skills to accomplish a task. We have both the ability to operate with purposefully directed attention and without it, or mindlessly. We think being mindful is good because it grounds us in the present (which is good) and assume therefore that it must always be good, hence being inattentive or operating without attention must be bad. But this is clearly a thinking error. Darkness is not bad due to being the absence of light; moving slowly is not bad due to the ability to be quick. Yet we prioritize mindfulness and ignore the value of being able to function without complete awareness and focus. Routine tasks would bring us to exhaustion before breakfast if each task had to be performed mindfully, with memory and rational thinking skills. And again: people who are experiencing dementia do not lose the ability to perform tasks on autopilot (unless someone quizzes them or asks them to use rational thinking instead).
Applying this either/or analysis to our various cognitive skills leads us to view those who are experiencing dementia as disabled rather than differently abled. (We apply this to other populations as well. For example, we diagnose our children with ADHD and prescribe medications to alter their behaviors, despite decades of effort by Edward Hallowell to open our eyes to a more accurate and useful context and model. He proposes a strength-based approach, an experiential model, just as I do for dementia.) With dementia, we continue to apply the disease model, and in doing so we separate, objectify and stigmatize those whose cognitive skills begin to differ from what is prized by society.
Suffering in dementia comes from how we are treated
When I began spending time with people who were experiencing dementia over a decade ago, I quickly realized that although they were losing cognitive skills, they were not losing all their cognitive skills, and that those they kept were the most essential for enjoying life. I saw that the suffering my new friends were experiencing—the suffering we equate with dementia—came from how they were treated, not from their losses. It is the biomedical model of disease/symptom/treatment that we continue to apply to dementia that causes pain and stress and loss of dignity. Surely, we understand that losing our ability to understand why or how—to grapple with facts or evaluate or categorize—does not negate our ability to enjoy beauty and companionship, let alone our humanity. Surely, we understand that when someone loses the ability to recall and recount past events, they do not become immune to experiencing joy or pain, both physical and emotional. Yet so very often I have been told: “It doesn’t matter—s/he won’t remember anyway.”
We create stigma through our fear of dementia
There is profound fear associated with dementia. We are afraid to talk about it; we are afraid to spend time with people who are experiencing it or to let others see that a family member is experiencing it. In our fear and avoidance we punish those experiencing dementia with isolation; in our choice of seeing dementia as disease, we reduce those experiencing it to products of disease. We create stigma through how we look at dementia—stigma that is neither inherent nor unavoidable.
What if we began to value both sets of thinking skills and recognized that those of us who are experiencing dementia lose only the secondary set? What if we were to contemplate the significance of being endowed with not only memory skills, but experiential skills as well, and embraced the beauty of being fully experiential? What if we accepted the benefits of being able to complete the mundane on autopilot? Since we have arrived here in our modern world with three contrasting pairs of skills, does it not follow that all of us will be differently abled to varying degrees during the course of our lives?
If we were to accept our varied cognitive skills and their distinct values, we might stop seeing those of us who are experiencing dementia as diseased and in need of a cure, and find ourselves thinking about them as being just like us, using what skills we have to get through the day with dignity intact, hopefully with moments of companionship and laughter and enjoyment. And then, instead of us and them, we would find ourselves among ourselves. After all, every day, we each interact with people who have better rational skills, memory skills, or attention skills than we do—and they accommodate us. And we interact with people who have fewer skills in some of those same areas, and we accommodate them, or at least we should. We do accommodate children as they gain skills. Why can we not accommodate our elders, especially those who are experiencing dementia, as they lose skills?
“Doing” versus “being”
I think Ram Dass said it all when he said we are all just walking each other home. But we, as a society that prizes memory skills and accomplishment and material wealth, have taken our eyes off the ball. We have begun to think that happiness is something to be found or pursued or sought, turning even happiness into a commodity. We have become enamored and blinded by doing and things, and in that have become blind to being and the relationships between things.
This is the real source of stigma in dementia. It lies in what we prize, in what we admire. Yet that feeling of having arrived and being of value that we so desire isn’t available in the exercise of comparison or analysis or definition. It exists, but it is simply that: in existence. And we can only reach it within ourselves, through being present, through using our intuitive thinking skills, by turning our focus away from doing to being, and to the relationships between things, whether those things are human beings or other life forms or ecosystems.
Curing the stigma lies in valuing the strengths that remain
And now consider that there are some of us who are equipped to do just that—to be, to experience, to enjoy without exercising rational thought or memory skills. In fact, they are less distracted than we are by what has been gained or lost in the past, and what we fear might be gained or lost in the future. They are our society’s unwitting monks—seers, visionaries, and travelers to a land of intuition and presence and being that the rest of us are so distracted from.
Those who are experiencing dementia are fully equipped to enjoy beauty in all its forms—art, music, emotions, and companionship—and the richness of existence that resides only in the present. We would reap such benefits if we could just stop being afraid. If we reconsider the model we have applied to dementia, we can lessen the suffering our approach is causing, and cure the stigma around it as well.
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