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Alzheimer’s Disease and Spirituality: Remembering and Being Remembered

The spiritual, somatic, psychological, mental and social being we call “human” experiences all of life as a whole. When one dimension of personhood changes, all other dimensions of personhood change. No condition demonstrates this truth more clearly than does Alzheimer’s disease.

It is certainly true that much that can be said about persons with Alzheimer’s disease (abbreviated PWAD) can also be said about the frail aging, chronically ill disabled and demented persons. But one feature of PWAD is unique. The person forgets self and others; she or he even forgets how to act like the self they once were. Many demented persons still carry the persona they had carried for their entire lives. PWAD take on a new persona that makes others wonder is this physical presence is even the same person.<?xml:namespace prefix = o ns = “urn:schemas-microsoft-com:office:office” /> 
Yet, PWAD have much to teach us about faithful living. And PWAD have much to teach the church about faithful ministry.

PWAD live faithfully by reminding us that we are not truly in control of our health, even of our rationality. Our normative experience equates reason, controlled emotion and memory with personhood. “I think, therefore I am.” PWAD challenge this assumption. Although the brain is being destroyed, the person is not. Thus, our common conception that cognition and reason are key hallmarks of being children of God is revealed as inadequate. 
PWAD live faithfully by demonstrating hope and courage in the face of unchangeable suffering. Our technology-driven medicine offers the illusion (or dream) that all suffering can be removed from human experience. PWAD constitute our current reminder of this fallacy. While it is possible that technology will find a way to prevent, slow, and/or reverse this disease, PWAD live with the reality of suffering today.

PWAD live faithfully by offering opportunity to encounter the power of love in suffering (Romans 5:3-5). Human value does not lie principally in our reason or in our health. Value lies in being. Their daily walk with suffering focuses attention on being in God’s presence, even when that presence is not apparent. 
The church demonstrates faithful ministry by maintaining community. Even when PWAD fail to remember, their community can remember them. Thus, their personhood is rooted in relationship and not productivity; in interdependence and not independence. To be remembered by God is a fundamental hope for our future. We can act as God’s ministers by remembering those who no longer remember themselves.

The church demonstrates faithful ministry by being present as change envelops the person they knew. All friends and family are decentered by such change, yet ministry requires new possibilities to be expressed for relationship and love. Too frequently we abandon those who cannot meet our needs, even our need to have our ministry appreciated. PWAD provide ample opportunities for generosity rather than mutuality to ground ministry. 
Teilhard de Chardin described the process of spiritual transformation as occurring through two modalities: our activities and our passivities.

Our activities are those areas of life we control. We invite God to our side as companion and sustainer. We take intentional steps toward making liberation and peace available for self and others.  
Our passivities are those areas where forces seize our best intentions, when we careen into chasms of desperation and hostility. We resist these dark times and experience alienation and despair. We struggle to know God’s presence in times of broken meaning as a basis for transformative hope.

PWAD are certainly caught in a passive spiritual transformation. Those who care make an active choice to either approach or flee. But even those who approach ultimately face the rigors of passive spiritual transformation. Such is the power and opportunity that this disease engages. 
For those who wish to enhance knowledge and resources in this area of ministry, the following Web sites are wonderful beginning places.

You are One of Us: Successful Clergy/Church Connections to Alzheimer’s Families is a booklet for churches and clergy which explains Alzheimer’s disease, how to communicate with those who have it, and how it affects families. It is also a guide for “tending to the spiritual self” and ways one can reach out to those with Alzheimer’s disease and their families.  
Resource List: Spirituality and Dementia Care is extensive and very focused on the unique challenges of PWAD. It is an excellent bibliographic resource.

Steve Ivy is vice president for values, ethics, social responsibility, and pastoral services of Clarian Health Partners in Indianapolis, Ind.