Several years ago, my rock band played at a weekly Sunday afternoon program for the residents of the senior residential facility where I served as Chaplain.
Among the folks in the audience was Mary (not her real name), a 93-year old lady, who was coping with dementia and other health challenges. Her gait was usually measured, as was her speech. But that afternoon, as we started playing “Johnny B Goode”, Mary walked up to the stage and started dancing with incredible energy and poise. As I looked at her, (it was hard to concentrate on drumming), I could tell that she was totally focused on making her body move the way she wanted it to—the way it once had done effortlessly. As she danced, the audience–residents, staff and family members—applauded and encouraged her.
After the program, I said to her, “Mary, you sure were boogeyin’ out there…”
“Well,” she drawled, “as long as the good Lord lets me, and as long as the spirit moves, I’m gonna DANCE!”
Thank God for folks like Mary. She was one of those individuals who reminds us that dementia may rob a person of their mind, but it does not rob them of their soul and their spirit. In so many different ways—through music, painting, the enjoyment of nature, scripture reading and worship– “the Spirit” continues to move in these folks. It continues to animate them and, despite cognitive loss, keep them vital. Indeed, when we are present when the Spirit moves people like Mary, it is a good bet that the rest of us will be inspired by them–as the applauding audience affirmed that day!
However, not all of us share this perspective. So many people look upon individuals with dementia as “having lost their minds” and therefore are now of little value. A major reason for this attitude is because we live in what Dr. Stephen Post has called a “hyper-cognitive” culture—a culture in which the worth of human beings largely based on their productivity, which in turn is based on their cognitive capacity and acumen. Thus, it is often the case that when cognitive capacity goes, he/she is or respected, and may very well become “marginalized” by society. Moreover, it is often assumed that when people with dementia “lose their minds”, they also “lose their souls” and the capacity for experiences that edify the spirit.
To be sure, such attitudes are quite different from those found in the traditional religious teachings of Judaism, Christianity and Islam, which all affirm that every human being, no matter how cognitively compromised, is created in the image of God, is entitled to unconditional dignity, AND continues to have a soul and a spirit that can still thrive, despite their cognitive impairment.
In some professional circles focused on caring for older adults , folks talk about “strengths-based” approaches—focusing not on deficits and disabilities, but on the strengths and abilities that still abide. I like to think of this idea as already having been anticipated by the ancient Sages of the Talmud, who taught that when God spoke the Ten Commandments to the children of Israel at Mt. Sinai, every person present heard the Divine voice according to his/her own abilities: the wise heard it in their way: men heard it in their way, women heard it in their way; the young heard it in their way, the old in their way. Everyone heard it uniquely for this reason: the Divine Voice is not just heard by the Mind, but also by the Soul. Indeed, sometimes even more strongly: in my experience, it often happens that as a person’s cognitive capacity and “filter” weakens, his/her capacity for spiritual expression becomes even more alive and vital.
A true story:
In Jewish Tradition, the High Holidays—the ten days beginning with Rosh Hashanah (the Jewish New Year) and concluding with Yom Kippur (the Day of Atonement) are a time to take “spiritual inventory” in order to try to improve one’s self in the coming year. With this in mind as the New Year approached, I once sat with some of the Jewish residents who had dementia, and asked them some “spiritual” questions, hoping that they might better connect with the sacred season. What follows are two of the questions, along with answers that were offered. Some of them were a bit “predictable”, but certainly no less heartfelt. Others were not only surprising, but truly inspiring:
Before you leave this world, what do you want others to know?
“It is important to make life easier for those around you.”
“Live life as if today was your last day”.
“Be kind and considerate and help others even in a small way.”
“That I was a good person…and a good singer.”
What do you hope for?
“A better tomorrow for ourselves and our loved ones.”
“That pain and suffering will end.”
“That I will have the strength to better bear the burdens I have.”
“That I will be remembered by those I love.”
“That my family will continue to laugh.”
“That my children will understand me better, and I will understand them better.”
I was stunned…and profoundly moved: these were responses from individuals who were supposedly “out of it”. And yet, there was so much genuine feeling and wisdom!
At this point it should be noted that, although the words “religious” and “spiritual” are often used synonymously, spiritual needs are not necessarily the same as “religious” needs. “Religion”—a particular set of beliefs and rituals—is one way of expressing a person’s spiritual needs, but it is erroneous to assume that if a person is not a member of congregation or church or does not profess a certain religious faith, that he/she does not have spiritual needs to be addressed. Today the word “spirituality” has many definitions, including:
–“that which brings meaning to life and that which forms values for an individual.”
–“how we live out the relationship we have with a higher being or what we claim to be meaningful in life.”
–“the internal sense of wellness, the sense of commonality among all people. In religious terms, it is that aspect of a person that is created in God’s image…the process of connecting to our sense of meaning, value, and purpose to create a sense of identity.”
These are only three of many definitions of spirituality, but what all of them have in common is a focus on meaning, and for people with dementia, “meaning” is about personal affirmation and relationship.
This is why the spiritual well-being of persons with dementia depends on continuing to help them relate to their surroundings and to other people. Even with their cognitive losses, they still need to be able to give and receive love and attention. They can still feel compassion and concern for others. They have senses of humor; they feel sad and happy, and often still have social graces. As Rev. Elbert Cole, a pioneer in the field of spiritual care and dementia, so eloquently reminds us: people with dementia have the same needs as all people. They need to:
–Love and be loved, respected and appreciated.
–Express compassion and share of themselves.
–Feel productive, stimulated, and secure.
–Celebrate the joy of living.
Often feeling overwhelmingly disconnected from their surroundings, from other people, and from themselves, persons with dementia may have a more compelling need to feel connected–even more than those of us who are “with it”. Affirming their “personhood” and unconditional worth, we also affirm their entitlement to staying “connected”.
But for many of us, this is often easier said than done. Persons with dementia have a limited repertoire of responses, and therefore working with them can be more challenging. Whereas relating in “normal” ways depends on memory, reason, cognitive integration (the ability to process and organize), some or all of these are usually weaker or altogether lacking in persons with cognitive impairment.
But, as the late theologian Henri Nouwen taught, even with such a challenge, one can still offer “a ministry of presence”—one can just be fully present to, and for the other person—focusing on the person, rather than the problem. When a person’s words no longer make sense, it is about “listening to the “melody” (tone of voice), rather than the lyrics. It is about communicating safety and acceptance: “I am here for you and I care about you.” It is that authenticity that ultimately creates connections that are “soul to soul”.
The Sages of the Talmud taught: “Be careful with an old person who has lost his memory, for it is said that the holy tablets of the Ten Commandments and the fragmented tablets which Moses shattered, were both housed together in the Holy Ark.” Just as the broken tablets of the Ten Commandments retained their sanctity, so too a human being who is somehow “broken”, nevertheless retains his/her sanctity and dignity. Those of us who believe this to be true—whether we be professionals or lay caregivers—we face a great challenge. The numbers of individuals coping with dementia is increasing, and as the baby boomer population ages, these numbers are going to increase dramatically. In order that these individuals not be marginalized or lose their dignity, we must affirm their continuing unconditional worth as human beings, despite whatever cognitive losses they may have. And we can do that by continuing to find ways in which the Spirit can continue to move them.
May our efforts be worthy and may we be blessed with success.
Cary Kozberg is CEO of Side by Side: Life Transitions Coaching for the Later Years, providing emotional and spiritual support for those experiencing “caregiver stress”. He is a Board-Certified Chaplain with over 25 years of experience working with older adults and their families.
*An earlier version of this article was published in the Journal of Geriatric Care Management, Vol. 18, #2, Fall 2008.