Medical training taught me neurology. But my father, living with dementia, drew out what was required of me for care partnership. Lester Potts, the best man I’ve ever known, died of Alzheimer’s disease in 2007, but not before he showed us his spirit through art. 

Dad never displayed artistic talent before the diagnosis. At a local dementia day care center, he painted watercolors; in essence, brushing his selfhood onto canvas. In so doing, he brought us out of a dark place where we watched, helplessly, as dementia worked cruelly. 

Photo by Dr. Daniel Potts.

Seeing Dad’s spirit dance through creativity awakened me to the spiritual side of dementia care. Subsequently, I’ve met others who live well, either as persons with dementia or care partners, by relying on the spiritual for sustenance, well-being and meaning making out of suffering. Credit also goes to clergy and faith leaders, elders, mentors, dementia care professionals, mental health professionals and counsellors, artists, writers and family members who have helped to shape my own spirituality.

Here, I employ a broad meaning of spirituality as having to do with the essential, the soulful, 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 instead of superficiality, compassion rather than heartlessness, other-centeredness rather than self-centeredness, and true self-orientation as opposed to ego self-orientation.

Honouring the spiritual

Photo by Dr. Daniel Potts.

Honouring the spiritual is about acknowledging the sacred core within each of us, that inviolate, imparted, incarnate entity which forms the central element of the self, rendering personhood immune to diminution by any state, condition, disease, reductionistic definition or philosophy. Thus considered, personhood becomes the foundation upon which to build the structures of dementia care. 

Such a stance has a strong theological basis 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.”  And, in their book, No Act of Love is Ever Wasted, authors Dr. Jane Thibault and the Rev. 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.” Thus, seeking the abiding self of one living with dementia is best considered within a spiritual framework.

"Facing the truth of our shared human mortality, we may find ourselves within the realm of the spiritual: reducing our fear of diminishment and death through accepting the inevitable and incorporating its essential threads into the fabric of our transcendent lives."

– Dr. Daniel Potts

Photo by Dr. Daniel Potts.

Unearthing value among loss

The benefits of considering the dementia journey as spiritual may promote well-being: the reduction of stress and its effects, the fostering of resiliency, the making of meaning amidst suffering, the garnering of hope and joy despite loss and grief, and, eventually, the cultivation of presence and transcendence — an “unbinding” of dementia’s restraints.

Considering the spiritual side also brings an awareness of gifts — graces small and large, often unexpected — which can be uplifting on dark days, and for which one may begin to look, expecting to find these hidden treasures in the secular and mundane. 

Seeking the authentic depths of others helps us to access a similar place in ourselves, safeguarding against burnout. One learns to let the inner self of another energize and inspire them. A sense of awe may follow from encountering the depth of another person, in spite of losses.

Layers with which society invests us tend to insulate us from making contact of any depth with ourselves, our neighbours, or the intransient elements of our surroundings. I believe persons who are living with dementia have shed some of those layers, and often are living from a more authentic place than many of us. Different spiritual traditions teach the importance of diminishment in the process of enlightenment. For instance, medieval mystic Meister Eckhart said, “God is not found … by adding anything, but by a process of subtraction.” Learning how to remove socio-cultural accoutrements, we may encounter each other’s souls, including those who are living with dementia.

Overcoming grief

Grief is common to care partnerships. We grieve what we perceive as the loss of the person 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 historical relationship, which dementia renders inoperable. Relationship still can occur, just not exactly like it has in the past.

Photo by Dr. Daniel Potts.

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. This will require flexibility and intentionality on the part of the care partner, and the freedom and compassion to let ourselves grieve.

Sometimes, care partners may consider too painful the thought that our loved ones might 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 able to feel, to know, and therefore, to hurt. Such reductionism can be a protective mechanism for concerned care partners.

But, if we come alongside our loved ones again in their current state, though we may weep, our “weeping may unleash the fires of hope within us,” as expressed so poignantly by Simone Campbell. Facing the truth of our shared human mortality, we may find ourselves within the realm of the spiritual: reducing our fear of diminishment and death through accepting the inevitable and incorporating its essential threads into the fabric of our transcendent lives.

"The communal light of many candles can illuminate the world of dementia care."

– Dr. Daniel Potts

Photo by Dr. Daniel Potts.

Finding light through empathy

Centring ourselves on the selfhood of another can be a self-emptying experience that is paradoxically filling. We enter the lines of another person’s story through empathy, and, through some spiritual transaction, may briefly become the other. This enfleshment of another life may be the highest aspiration of the care partner’s spiritual journey. 

We are changed from encounters like these. Venturing into the depths, we come back different. We have treasures to show and stories to tell. 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 illuminate the world of dementia care.

In conclusion

I am in awe of the loving care expressed by so many care partners, and the courageous living of persons with dementia. I do not dare 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 share hope that I know is needed by those on this journey.

Godspeed!