Thoughts on the Spiritual in Dementia Care

“We are not human beings having a spiritual experience. We are spiritual beings having a human experience.”―Pierre Teilhard de Chardin

The older I become, the more I see dementia care as a spiritual endeavor. Primarily, this is because, in the majority of cases, the people whom I have observed to be living well either as persons diagnosed with dementia or care partners of those with dementia rely heavily on the spiritual for their sustenance and well-being. Also, I credit others—clergy and faith leaders, elders, mentors, dementia care professionals, mental health professionals and counsellors, artists, writers, family members, etc.—who have helped to shape my own faith and spiritual beliefs and practices.

Here, I am employing a broad definition of the spiritual as having to do with the essential, the inner, the relational, that which promotes growth and not decay, acceptance and not denial, peace as opposed to conflict, love as opposed to fear, trust as opposed to anxiety, gratitude in contrast to resentment, community as opposed to isolation, creativity as opposed to stagnation, depth as opposed to superficiality, compassion as opposed to heartlessness, other-centeredness as opposed to self-centeredness, true self-orientation as opposed to ego-self orientation. Organized religion certainly falls under this category, as well, but is not an essential part of it for many.

Honoring the spiritual in dementia care is about honoring the sacred self in each of us, that inviolate, imparted, incarnate entity which forms the central element of personhood, rendering personhood immune to diminution by any state, condition, disease, decree, reductionistic definition or philosophy. Thus considered, personhood becomes the solid foundation upon which to build the structures of dementia care, with the goal of supporting this personhood, enabling its expression, and promoting its natural relational energies to build self-and others-supporting community. It can be found, if we cultivate the perception to “see” it. I consider this to be spiritual work of high order.

Such a stance has a strong theological basis which is beyond the scope of this essay. In his book, Dementia: Living in the Memories of God, Dr. John Swinton speaks of persons living with dementia as being eternally remembered by God: “Despite confusion, true personal identity is known and held only by God, and nothing can destroy such divine recognition.” ¹ And, in their book, No Act of Love is Ever Wasted, authors Dr. Jane Thibault and Dr. Richard Morgan posit that “at some level the person (with dementia) lives deeply in the mystery of God’s love, in intimate connection with God’s love, without the distractions of the world…” ² Thus, seeking the abiding self of one living with dementia is best considered in spiritual terms, and within a spiritual framework.

The benefits of considering the dementia journey and dementia care as spiritual may be self-evident, coalescing in the promotion of wellbeing: the reduction of stress and its effects, the fostering of resiliency, the making of meaning through suffering, the garnering of hope and joy despite loss and grief, the enabling of generativity despite growing dependence, and eventually, the cultivation of presence and transcendence—an unbinding, if you will, of dementia’s restraints.

One may practice the spiritual in dementia care and not know it, or, at least, not name it. There is nothing wrong with that. However, considering the spiritual as spiritual has some advantages. First, it brings an element of mystery, of ethereal goodness, which one may find to be supportive. This can promote trust in something greater than oneself and one’s own powers, which may be taxed in care partnership. It can be exhausting to struggle, in futility, to exert one’s power in attempts to control situations that cannot be controlled. Furthermore, considering the spiritual as spiritual may call forth a sense of awe or wonder, promoting humility and fostering gratitude. Additionally, it can create a sense of belonging or fitting into a much larger framework, a broader field, which can be a freeing experience.

The world of the spiritual is a world of gifts—graces small and large, often unexpected—which can bring uplifts on dark days, and for which one may begin to look, expecting to find these hidden treasures in the secular and mundane.

Seeking the spiritual in dementia care means reaching for the depths of another person, coming into contact with the core of authenticity. In order to do this, one must find a way to access the same place in oneself, though I believe this initially is not the focus. I believe this inner journey is enabled through the care partnership, if allowed, and accompanied by openness, vulnerability, mindful listening, non-judgement and reciprocity, so that one learns to receive energy and care from the relationship, consistent with the concept of growth versus decay that characterizes spirituality. This helps to guard against burn-out. One learns to let the inner self of another minister to them, energize and inspire them. I believe one may even cultivate a sense of awe mentioned earlier, from encountering the depth of another person in this way, in spite of any losses than may be occurring on the exterior.

Layers with which society and culture have invested us seem to insulate us well from making contact of any depth with ourselves, our neighbors, or the intransient elements of our surroundings. Many of us seem to skim the surface of our existence, making few waves, and rarely encounter things that can truly change us and bring us to life. It seems great love or great suffering is required to awaken us, as Fr. Richard Rohr has suggested in many of his writings. ³

I believe persons who are living with dementia have shed some of those layers, and often are living and interacting from a more authentic place than many of us who do not have dementia. In theory, this should make it easier for us to enter this “thin space” around the spirit, to borrow a concept from Celtic spirituality. But we have to ask ourselves if we are brave enough to go there. What may we find? What does this mean?

Grief is common to care partnerships. ⁴ We certainly grieve what we perceive as the loss of our care partner (the one who is living with dementia). But also, I believe we grieve the loss of our own egoic (or mental) construct of the person and the nature of the relationship as it has been characterized historically, and which is no longer operable due to dementia. It is critical to remember that relationship still can occur, just not exactly like it has occurred in the past. It is unfair to hold someone who is living with dementia accountable to be what our egos desire them to be. Sure, we may continue to cherish the relationship as it has been in the past, but we must dare to let go of that image so that we will be free to have a relationship with our loved ones in their current state, realizing the core of personhood remains, but must be honored in its ever-evolving representation. This will require flexibility and intentionality on the part of the care partner. And the freedom and compassion to let ourselves grieve.

But why bravery? Sometimes it may help care partners to deal with their own pain if they see their loved ones as no longer fully present. We, as care partners, may consider too painful the thought that our loved ones may be locked inside a mind that is racked by dementia, acutely suffering their losses that pile up daily. It may give us unconscious comfort to consider them less than they were, less able to feel and know, and therefore, to hurt. Such reductionism can be a protective mechanism for care partners.

But if we can summon the courage to consider the core still present, and to come alongside our loved ones again in spirit if we are not able to in body, though we may weep, our “weeping may unleash the fires of hope within us,” as expressed so poignantly by Simone Campbell. ⁵ Facing truth in this way also brings us face to face with our own mortality, which all of us resist (even healthcare providers resist this, perhaps explaining why we providers often avoid painful conversations with our patients). But the truth must always out, and when it does, we may find ourselves within the realm of the spiritual.

Medieval mystic, Meister Eckhart said, “God is not found…by adding anything, but by a process of subtraction.” ⁶ Learning how to remove the accoutrements with which culture dresses us, we may be enabled to encounter each other’s souls, including those who are living with dementia, thus unencumbered by the disease process. We must be willing to dwell in the present, for it is along the leading edge of the present moment where such encounters happen.

Centering ourselves on the selfhood of another in the unfolding present can be a kenotic, or self-emptying experience which has rewards that are paradoxically filling. Through this very spiritual act, we are able to enter into the lines of another person’s story, to take up our part as an observer there. If conditions are right, we may briefly become the other by the embodiment wrought through empathy. This enfleshment of another life I consider to be the Holy Grail of the spiritual journey through dementia. It is possible to consider the eye with which we are seeing the other person and their story as the same eye with which we, ourselves are seen and known, even in our “dis-ease.” This is the vision of God which none of us in this life may ever hope to co-opt, but through which we are given brief access, as much as we, in our human frailty, are able to take.

Having found ourselves in such a sacred space, how could we not bow in awe? The sheer face of the spirit, thus beheld, is grander than a mountain vista at sunrise. The expression of awe, gratitude, even worship is an innate response to such a beholding. So, we are taken into the realm of the spiritual through courage, letting go, weeping, listening, giving, focusing, seeing, staying, centering.

We are changed from encounters like these. Venturing into the depths, we come back different. We have treasures to show and stories to tell. We are witnesses-turned evangelists. The light of the story then radiates from us. And this is key: our own inner light is kindled by that of another, and we are able to share this light. The communal light of many candles can light the world of dementia care, if we will let them burn.

I, myself, am in awe of the loving care I have seen expressed by so many care partners, and the courageous living of persons with dementia. I do not dare try to instruct someone who has walked, or who is walking this road. I also realize that the demands or experience of care partnering may make it very difficult to see anything redemptive about it, to consider the spiritual at all in the struggles. And I respect that. What I have written here is shared simply to encourage, to offer a paradigm that I and many others have found to be health and peace-promoting, and to offer hope that I know is needed by those on this journey.

I acknowledge, in deep gratitude, all who have shared such a vision with me.

Godspeed, care partners, along your way.

–Daniel C. Potts, MD, FAAN

Notes

1. Swinton, J. Dementia: Living in the Memories of God (William B. Eerdmans Publishing Company, 2012)
2. Morgan, R., Thibault, J. No Act of Love is Ever Wasted. (Upper Room Books, 2009)
3. Rohr, R. The Naked Now (The Crossroad Publishing Company, 2009)
4. Blandin, K. Dementia Grief – Part 1: The Unique Characteristics. 1/29/2016. (https://www.dementia.org/dementia-grief-characteristics)
5. Campbell, S. from a lecture at Conspire 2015, sponsored by the Center for Action and Contemplation
6. O’Neal, D. Meister Eckhart: from Whom God Hid Nothing (New Seeds, 2012)

This is a photograph of a beautiful work of art hanging at Caring Days Adult Dementia Daycare Center in Tuscaloosa, Alabama.