by Susan Pascal
Dr. Daniel Potts, a renowned neurologist, author and Alzheimer’s advocate, knows firsthand about the struggles of the disease. His father, Lester, was diagnosed in 2002. According to Potts, Lester was a deeply religious man who regularly attended worship services. Even as the disease progressed and his mind deteriorated, Potts watched his father try to maintain his faith and saw the importance of creating dementia-friendly places of worship.
1. As a neurologist and from a medical perspective, what signs did you observe in your father as his cognitive abilities declined and he struggled to practice his faith? Was there an indication that it became more difficult for him to express his faith?
Because Dad’s was a faith expressed primarily through work and service, I believe his progressive dementia-associated constraints limited his experience of living out his faith. Aphasia (loss of language), a characteristic of Alzheimer’s, also affected Dad strongly, thus limiting the verbal witness to his faith. Furthermore, with dementia progression, Dad and Mother were less often able to attend worship services.
I believe it was primarily due to these losses that Dad increasingly manifested a depressed mood, emotional withdrawal and apathy, agitation, anxiety and a tendency to wander. Thus, his peaceful presence seemed to be affected by this dementia-associated hindrance to faith expression.
2. As a son of Alzheimer’s, what are some of your poignant memories about your father as he tried to worship, especially as the disease progressed?
Dad had always been one of the best friends and biggest supporters of the ministers in his church, going out of his way to encourage them in any way he could, such as complimenting them after a good sermon upon exiting the sanctuary. As Alzheimer’s progressed and Dad began to become somewhat disinhibited, he often would step into the aisle and stop the minister during the recessional before the end of the church service, shaking hands and giving compliments. Though handled magnanimously by the ministers, this was a disruption in the service and was something he never would have done prior to diagnosis. But I know that this was both an expression of the gracious aspects of his personhood, and his desire to be true to his faith in upbuilding others. And his ministers were creating a dementia-friendly community by honoring Dad’s spontaneous, albeit disinhibited, expression of gratitude during worship.
Perhaps most poignant among my memories of Dad’s expression of faith and worship was the emergence of his hidden artist talent, undiscovered until after the diagnosis. Dad attended Caring Days, a faith-based dementia daycare facility in Tuscaloosa, Alabama for a few years during the middle stage of Alzheimer’s, and, while participating in their art program, painted over 100 original watercolors, many of which were expressions of his life story and innate personhood. For our family, and for many others, Dad’s art is imbued with deep spiritual meaning. It is significant that this was happening as he was losing his hold on reality, his working memory, and his language. Things were flying away in the gale of Alzheimer’s, and what was left was the truth of Lester Potts, who he was at his core. I believe this drive to create was for Dad an expression of faith and worship, “working for the kingdom” the only way he could at the time.
At my father’s memorial service, our family’s minister, Dr. Charles Durham, shared these words, referencing to the expressions of worship mentioned above:
“Faith is deeply implanted, deeply rooted, and nothing can ever separate us from the love of God. Even in his most difficult times, Lester Potts could still pray the Lord’s Prayer, and mouth the prayers of the blessing. As this family gathered ‘round and sang the Lord’s praises and hymns, that man of faith would mouth them right along with them. And so, we know, beyond any shadow of a doubt, that (God’s) righteousness goes to God’s children’s children.”
3. What have you learned personally about the importance of faith and worship after witnessing someone struggle with a disease that technically wipes out your memories? Once a believer, does God become a memory vulnerable to be forgotten—or something that can survive the loss of cognitive ability?
There is mounting evidence in the literature that faith and spiritual practices of persons living with Alzheimer’s disease and other causes of dementia continue to exist despite their cognitive impairments. Many studies have shown that faith and spiritual practices help persons living with dementia find hope and acceptance of their cognitive losses, and personal spirituality is an effective and commonly used coping method for the psychological stressors associated with dementia.
But where the rubber meets the road—and where I believe much of the fear and suffering associated with Alzheimer’s and other dementias lies—is the demise of the self, the diminishment into oblivion that is an underlying premise of the so-called “tragedy narrative” of dementia. Is the storyline of dementia only about loss, or does it bear witness to some greater truth?
Since those of us living without dementia are incapable of fully understanding the inner world of those living with the disease, we simply cannot know whether, at some deep level, there is an abiding sense of God’s presence, even if this cannot be named or voiced. But what we can do as care partners is to develop what Dr. Richard Morgan, a retired Presbyterian pastor and founding member of ClergyAgainstAlzheimer’s calls “spiritual intentionality.” He teaches us to learn to see life with dementia through a spiritual lens…looking for the golden cord of faith running through our daily encounters with life. Each of us as observers helps to shape the reality we expect to see.
For care partners’ own wellness and their relationships with persons living with dementia, this has obvious benefits, including helping to deal with resentments, find meaning in suffering, look for opportunities to love more rather than less, etc. But it also helps to create a reality in which expressions of faith can be looked for, even expected, encouraged and bolstered through the development of a supportive community for and with persons living with dementia.
4. Can you offer 5 tips for people struggling with dementia and Alzheimer’s who want to continue to practice their faith?
1. Give mindfulness a try. Mindfulness can play a part in any faith tradition or lack thereof. I see it as simply paying non-judgmental attention to the content of the present moment, maintaining a posture of gratitude, presence, stillness, non-attachment and compassion. I believe the present moment is the gateway to the holy, to the timeless, to God.
2. Make time for nature experiences. One of the last songs my father heard and sang in hospice has a verse that goes like this: “When through the woods and forest glades I wander, and hear the birds sing sweetly in the trees, when I look down from lofty mountain grandeur and hear the brook and feel the gently breeze, then sings my soul, my Savior God, to Thee, ‘How Great Thou Art!’ ” For many, the awe-inspiring beauty of nature calls forth spontaneous praise. Like mindfulness, nature experiences offer healing benefits to our brains and physical bodies. I believe such experiences also cause our spirits to sing songs of freedom and release, which could be especially important to those who are living in a form of bondage to dementia.
3. Start some kind of daily gratitude practice. This activity may be a form of engagement for care partners, who may need to play a greater role as a facilitator for their loved one as dementia progresses. But even late into the course of the disease, many persons living with dementia still can express gratitude for specific elements of their lives. Later, this may become more of a general thankfulness for love, sunshine, a flower, a song, or “a day like today.” This intentionality toward gratitude rewires our brains for happiness, and can be, of itself, an act of worship.
4. Tap into creativity, especially music. Songs of faith learned in the teens and 20s tend to be particularly effective. Painting, poetry, movement, drama, improv, and other means of creative expression can be effective. Like other aspects of dementia care, these activities need to be person-centered, with the person living with dementia having some control over the choice and timing of activities. I believe the expressive arts help people connect to the deepest parts of themselves and honor those parts. This, of itself, can be an act of worship, praise, and faith expression.
5. Create opportunities for giving back and paying forward. For people like my Dad who primarily worship and express faith in acts of service and good work, this can be very important. The adult daycare that my Dad attended offers opportunities for clients to make gift baskets for children at Christmas, stuff bags of food for the hungry, create thank-you notes or sympathy cards, etc. Such opportunities may improve a sense of self-worth, which Alzheimer’s and other dementias are adept at chipping away.
Most importantly, always know that the innate value and dignity of human beings cannot be stolen by any condition or circumstance, not even dementia. There is nothing to be ashamed of. Alzheimer’s and dementia can be incorporated into the life narratives of persons living with dementia and shared in a community of care partners and others who have the condition. My personal view is that there is a holiness inherent to authentic sharing, both the highs and lows, joys and sorrows, peace and pain of dementia or any other experience, and God can both be discovered, and worshiped in such a community.