By Dan Lunney
How do we develop a theological anthropology that includes people living with dementia? Such patients challenge the prevailing theories of personhood, which are based on modern values of efficiency, rationality, and productivity. The emphasis of modernity is captured in Rene Descartes’ assertion, “I think, therefore I am.” A more inclusive definition of personhood moves humanity from the pinnacle of creation to being in kinship with creation through God our Creator. This changes the focus of what it means to be human. Reclaiming personhood for people living with dementia needs to challenge our ways of viewing those deemed to be “other” and how we interact with and treat anyone.
As baby boomers age, the number of people living with dementia will increase over the coming decades. Creative solutions to help people live as fully as possible with dementia are necessary, because our systems of care cannot possibly scale up to meet the needs of those millions of people.
Because much spiritual care operates in organizations and systems where it is not the primary culture, chaplains need to use mutually critical dialogue, reappropriation, interpretation, and redescription . For example, when a person with dementia becomes agitated, the first response in a long-term care facility often is to medicate the person — to treat the symptom — rather than look for the cause or attempt to find out what the person is trying to communicate. Many disciplines have sought to change the medical model from cure and symptom management to a person-centered model. Learning the person’s narrative and developing a spiritual care relationship is central to the person-centered model and affirms their inherent dignity. It may be challenging to learn the narrative of a person living with dementia because of their difficulties with communication. That is why narrative and memory must be viewed as a responsibility of a community.
Dementia is seen by too many as a form of death – a state of being which is no longer considered personhood. Tom Kitwood developed a more inclusive theory of personhood, and Steven Sabat has further developed that work. Kitwood and Sabat discuss how an exclusionary definition of personhood results in social malignancy which leads to further ill-being for people living with dementia.
Those doing disability theology are important contributors in challenging what and who gets to determine what is normative and what abilities and disabilities have to do with our concept of personhood and our relationship with God. Hospitality and friendship have been put forward by disability theologians as responses which affirm personhood.
A more inclusive concept of personhood needs to have a more inclusive definition of spirituality. Carla Mae Streeter suggests “that the core of spirituality is the ache of human longing. We long for intimacy. We long to be connected with what matters … spirituality is real presence. It is being real, or fully human, and being really present—to myself, others, nature, the cosmos, the Divine.” This parallels the needs of people living with dementia addressed by Kitwood, our five great needs which grow out of the need for love: attachment, inclusion, occupation, identity, and comfort. The research on spiritual reminiscence conducted by Elizabeth MacKinlay and Corinne Trevitt is ground-breaking and affirms the abilities of people living with dementia rather than the disabilities.
I hope this brief synopsis article will whet your appetite to learn more about the concept of personhood and of theological anthropology, especially with regard to people living with dementia. As chaplains, our role is to affirm the personhood of people living with dementia, which leads to fostering their well-being.
Dan Lunney, D.Min., BCC, is the director of pastoral care and mission integration at St. Joseph Village of Chicago sponsored by the Franciscan Sisters of Chicago.
ii T. M. Kitwood, Clive Baldwin, and Andrea Capstick. Tom Kitwood on Dementia: A Reader and Critical Commentary. Maidenhead, Berkshire: McGraw-Hill/Open University Press, 2007.
iii Steven Sabat, “Mind, Meaning, and Personhood in Dementia: The Effects of Positioning.” In Dementia: Mind, Meaning, and the Person, edited by Julian C. Hughes, Stephen J. Louw, and Steven R. Sabat, 287-302. Oxford: Oxford University Press, 2006.
iv Jennie Weiss Block. Copious Hosting: A Theology of Access for People with Disabilities. New York: Continuum, 2002 and Nancy L Eiesland. The Disabled God: Toward a Liberatory Theology of Disability. Nashville: Abingdon Press, 1994.
v Carla Mae Streeter, Foundations of Spirituality: The Human and the Holy: A Systematic Approach (Collegeville, Minn.: Liturgical Press, 2012), Introduction.
vi Thomas Kitwood, “The Experience of Dementia,” Aging & Health 1, no. 1 (1997): 19.
vii Elizabeth MacKinlay, and Corinne Trevitt. Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work. London: Jessica Kingsley, 2012