Have you thought about what may be the root cause of the pervasive and toxic stigma associated with Alzheimer’s disease and other causes of dementia? I think about it a lot.
I believe stigma is the greatest barrier to be faced in all facets of this global problem, from research funding and clinical trial participation to building a dementia – friendly society.
In my view, the root cause for this stigmatization is the belief, albeit unacknowledged, that people living with dementia somehow embody less personhood than the rest of us. That the diagnosis of dementia somehow renders one less a person than before receiving the diagnosis, as if personhood could be diminished by any circumstance or condition at all.
Many definitions exist for personhood, including legal, philosophical, ethical, theological, psychological, ontological, relational and societal. The concept of personhood has evolved over the millennia, from the Greek “personae” of drama to the chauvinistic Roman legal definition, down through the Cartesian “I think, therefore I am.” This latter view has greatly influenced our modern cultural view.
But what about persons living with disorders of cognition? In our hypercognitive society, “brains” are valued almost as much as good looks and money. Is a person a person only if her “nerve net” can produce higher order reasoning, work differential equations or create success in the stock market?
I’m not a philosopher. Certainly no theologian. Just a simple country neurologist. But I am going to take a stab at defining personhood from a spiritual viewpoint, which I would argue is the most important one to consider:
Personhood is the condition of being a person: a relational being created in the image of God (imago dei) and named by God, who is sustained and will be eternally remembered through God’s Love and providence, with the potential to grow more in the likeness of God through an ever-expanding capacity for love, compassion and relationship.
That definition probably would not meet the muster of the experts, but it helps me work within a framework that can withstand stigma’s attack from without and within.
Yes, I know that I have unconscious biases that make me prone to stepping back into a dualistic, have and have-not, patronizing pattern that too long has characterized not only dementia care, but also society’s treatment of others who are different, who may have different challenges from mine.
No one can be rendered “less than” for any reason. That includes dementia. We retain our personhood for our entire existence. I would argue that continues after our physical bodies are no longer present.
So how could I possibly treat persons living with dementia differently than I would treat persons who fully possess all their cognitive abilities?
One of the most important developments in the world of dementia advocacy is the emergence of persons living with dementia who tell their own stories, sharing the lived experience from inside a world unfamiliar to most of us. There are too many of them to name, but I am profoundly grateful for their courage, strength and vulnerability. They are some of the best teachers and friends I could ever have, and I am learning more about life from them and their care partners than I could possibly write in this essay.
So, what do they say about their own personhood? Without naming specific sources, I will tell you that most of them acknowledge the times when they feel less than, or when they seem to be losing a sense of self. But many also share how they can “find themselves” through relationships with those whom they love, through faith and spirituality, through the arts and creativity, in the presence of animals or children, through the world of imagination, in present moment centeredness, through giving back to others, and by living in ways that add meaning and purpose to their days.
Out of deep respect, I would dare not speak for them. They are out there sharing their stories of pain, courage, resilience and hope. Listen for them. Look for them. Befriend them. Be transformed by them. Then share those stories yourselves, and be inspired to tell your own.
My two dear friends and fellow advocates, Lynda Everman and Don Wendorf, and colleagues have recently edited an upcoming book about dementia worship titled Dementia-friendly Worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities. The book is being published by Jessica Kingsley Publishers in June 2019. One of the themes of the book is the concept of souls “shining forth,” giving their unquenchable light to the world despite the dark days of dementia. We should look for that light in everyone, and in so doing, our light will shine more brightly, as well.
Thomas Kitwood, the well-known pioneer of person-centered care for those living with dementia, highlighted the role of relationships in maintaining intact personhood. He coined the term “malignant social psychology” to describe the way in which treating some as less than persons has negative effects on well-being. He posited that persons with dementia live in a state of relative well-being or ill-being, based not only on neuropathology but also the degree to which their needs are met in an affirming social context.
Thus, the importance of loving, compassionate, affirming relationships in dementia care.
Philosopher Martin Buber believed humans have two distinct ways of engaging the world, one of which the modern age ignores: “I – It, “and “I – Thou.” According to Buber, I – It is based on experience, not relationship; “It” is a collection of qualities and quantities, and a distance remains between the experiencing “I” and the experienced “It”: one is subject, and the other object.
In the I – Thou paradigm, “Thou” is encountered entirely and universally in a relationship that transforms both parties; in this “absolute encounter” we come to see every other being (nature, animals, people) as a “You.” There is no objectification, judgement or diminishment in this type of encounter. Further, Buber suggests this phenomenon is best described as love; through encounters of this nature, we meet the Divine: “In every Thou we address the eternal Thou.”
In a similar vein, philosopher Emanuel Levinas emphasized the essential nature of face to face encounters with others: “The dimension of the divine opens forth from the human face.” Roger Burggraeve, discussing Levinas’ thought, states “being touched by the vulnerable and injured face of the other…we no longer can remain indifferent…we are called to responsibility. In order to be touched by the suffering of the other, we must be touchable.” Catholic nun and author Simone Campbell follows: “Touching that which causes us to weep can liberate the transforming fire of hope within us.”
Encountering persons living with dementia can change our lives and make us grow in our humanity; indeed, our own personhood can be bolstered by such encounters.
Stigma also affects our willingness be place ourselves in relationships with persons living with dementia. Truth be told, I believe we fear looking in the mirror. That is, because of the unconscious (and incorrect) belief personhood can be lost at the hands of dementia, we fear relational encounters with those who are living with dementia because we fear our own future of diminishment and death.
I think this is one of the primary reasons we physicians do a generally poor job helping people with dementia to live well despite their diagnosis. In the culture of cure in which we were trained, we may consider our own selves “less than” competent if we must confront the reality of incurable disease, especially one which we believe steals the self of the patient. “Is life without a self really worth living?” we may wonder. How wrong-headed is such a notion?!
It is critical that we get over our fears by stepping out in openness, courage and vulnerability just like our friends living with dementia are doing. I would argue that, in many cases, people living with dementia are doing a better job of living into their own personhood than are many of us who don’t have cognitive impairment.
To summarize, I strongly assert personhood as being imparted, and therefore inviolate, unfading, even unending. And certainly not lessened by any disease.
If I do not hold such a view of personhood, then I am apt to regard those who experience cognitive loss as “less than,” negatively biasing my treatment of them, and my expectations of being able to form or maintain relationships with them. This deprives them of due dignity, amounting to a judgement…a judgement in favor of dementia, and against the human spirit.
I dare not pass such a judgement on a soul “shining forth” in the light of personhood. Rather, I’ll lift my own lamp and bask in the communal glow.
Is life worth the living in a perceived state of diminishment? Ultimately, that is a question with which we must become acquainted, as sooner or later, we will ourselves experience diminishment of one kind or another.
Because of the faith I’ve been given, and because of the light I’ve seen coming from the lives of persons who are living with dementia, my answer to that question will always be “yes.”
This is a photograph of a beautiful work of art hanging at Caring Days Adult Dementia Daycare Center in Tuscaloosa, Alabama.