Searching for Personhood

Step into her world. She is still there.

Sometimes you wonder, don’t you? If she were still the one you knew and loved, why would she look at you that way, so blankly? How could your face and touch be so unfamiliar to her at times, when it used to be so comforting? After all you do to care for her, why on earth would she lash out at you…why would she insult you and try to hurt you? How could anything, even this, make her forget you? And why does she always look for home?

You’ve tried to bring her back, to lead her by the hand to life with you again. There are those moments, those awakenings, in which you feel you’ve broken through. But then it returns: the drifting back into the fog of unawareness. And the spark is doused in hopeless humidity.

Her world is sometimes one of darkness, of wandering, of isolation. She often sees and experiences things she should recognize and know, but cannot understand them. Warped perceptions of reality close in on her existence, at times evoking panic and fear. She tries to escape to something she knows, something which will comfort her and give her peace. But every door leads only to another unfamiliar room, cluttered like a pattern-less gauntlet. Often she doesn’t even know herself, and sees within a mirror some startled stranger like the rest, another one who cannot make things well. Her life seems like a keyless, locked door.

But yet you know some seed of her must still be there. You see it at times, beautiful and true. May’s rose is a still a rose in December, is it not? Do petals-touched make the plant? Does blossoming perfume make the flower, or something more? Is a garden loved in winter as in spring?

How can this loved one be reached? You know her soul’s light still burns. Can dementia’s frozen walls be broken so that hearthside warmth of home again is known?

Alzheimer’s disease ravages memory, language, judgment, reason, intuition, and other elements of cognition to varying degrees. This dismantling of many of the self’s cognitive elements is one of the greatest tragedies of the disorder. With this can go the loss of realized self-worth (at least the portion based on occupation, productivity and societal identity) and dignity suffers profoundly.

Human beings need to create, to be productive, to be independent, to be loved, and to be in community with others who understand them. They also need to be able to share their life stories and experience the life stories of others. Alzheimer’s disease and other dementias adversely affect all of the above. But evidence supports the idea that elements of the emotional self remain even in the condition’s advanced stages. A kind word-spoken, a gentle touch, smiling eye contact, the sharing of a story or song, and communicating in ways that affirm people in their present condition all validate personhood and foster its expression. And when personhood is strengthened, dementia’s hold is weakened.

The unfortunate reality is that science and medicine, despite incredible advances, cannot currently offer therapies that significantly alter the underlying disease process we call Alzheimer’s. While disheartening, such information should act as an admonition to think “outside the box”; to make a paradigm shift in our efforts to help these individuals and improve their quality of life. If effective prevention and cure are still futuristic goals, then shouldn’t our focus broaden toward making each moment of their lives as good as it can be? Shouldn’t we allocate all the resources needed to mend some element of humanity-broken? If we have the tools to facilitate self-expression, creativity, communication, understanding, and restoration of dignity, shouldn’t we employ them? And shouldn’t we use these tools to aid the telling of their life story…a vibrant, living story that might be lost to the world and to the patient themselves if not facilitated and documented? What benefits might such efforts afford patients and care givers, as well as families and friends? Could this be a means to “break the ice” and reach the warmth of their inner-selves?

Depersonalization of care threatens our healthcare system as much as rising costs and lack of access. The model we have created provides no incentives for actually taking care of the core of a human being, for tuning all our senses toward their expressions of need, for administering healing therapies from the inside out, and for addressing care giver needs. Instead we are rewarded for spending as little time as possible with patients so that we can fill our schedules, and for meeting as many “quality indicators” as possible.

One of my life mentors, Music Professor Hugh Thomas at Birmingham-Southern College, was known to stop the Concert Choir in the middle of a monumentally important phrase of choral music literature with a tearful inquiry. “Children…” he would say, “what is the most important reason for doing what we are doing? I will tell you: inner enrichment…the edification of the self; both ours, and that of the listener.” Sure, I had some understanding of what he was saying back then. But I was no more able to grasp the full meaning or importance of his statement as an 18 year old freshman than I was capable of understanding the pathos expressed in the “Qui tollis, peccata mundi” movement of Bach’s Mass in B minor (“who takes away the sins of the world”).

The innate power of art in all forms lies in its ability to meld the heart and mind of the artist with that of the observer, to call to consciousness in one human being the depth of emotion, experience, spirituality and intellect behind the creation of the artistic work. I believe art, in all its forms, to be the purest medium of human connection, the one which most truly promotes holistic communion between individuals. Artistic expression thus helps to bypass roadblocks to communication and community laid by dementia and other causes of cognitive impairment. In addition, art can fulfill the human need to create and be productive. It can even make a person “known” to others who find interaction challenging. In this way, the arts help to strengthen the relational identity of persons with Alzheimer’s disease, at a time when their occupational and societal identities may be suffering.

Benefits of various forms of expressive arts therapy (visual art, music, drama, and bibliotherapy) include improvements in behavior, communication, sense of well-being, cognition, and social skills. Expressive arts therapies can facilitate the telling of life stories that no longer can be conventionally told. When such therapies are utilized as an essential element of person-centered care (care that validates the person despite the illness rather than focusing on the disease itself) dignity and perceived self-worth are promoted and positive family and care giver interactions are facilitated. In short, healing is fostered for all.

Have those of us who are healthcare providers missed our mark to some extent? Do we have to prescribe medications or administer cures to fulfill the Hippocratic Oath? Shouldn’t we direct more effort toward improving quality of life, restoring wholeness, promoting “purity and integrity of self,” even if this requires a change in modus operandi? Does this not constitute healing, by definition? I believe it does, and assert the arts as a primary means that should be supported and utilized within the structure of person-centered care giving models.

Yes, indeed, she is still there. And we must speak to her in the language of the soul.