Spirituality, Suffering and Dementia

Michael McCabe
Issue 17, November 2005

Introduction

Some forty years ago the Second Vatican Council concluded its deliberations with the very beautiful document, "Gaudium et Spes" - "The Church in the Modern World". It contains many rich themes, not least, the nature and dignity of the human person and the communal or social nature of that human person. By his or her very nature the human person is not only to be considered "whole and entire, with body and soul, heart and conscience, mind and will" (Gaudium et Spes, n.3), he or she must also be considered as a being-in-community.

This vision of humanity, which is essentially, and necessarily, holistic, forms the basis and starting point for ethics and morality. For the patient suffering from a dementia-related illness, and for his or her loved ones and caregivers, a holistic vision of the human person is vital in order to meet the unique challenges of caring for such patients.

After defining spirituality and exploring its link with moral theology and ethics, and after briefly reflecting on the mystery of suffering, this article will outline some of the implications in the spiritual care of such patients.

Understanding Spirituality

The spiritual dimension of the individual helps to makes the person unique. For the terminally or chronically ill this dimension assumes even greater importance – so much so that the issues at the end of life are primarily spiritual or relational. That said, defining spirituality is a significant challenge even for those who acknowledge the unique union of body and spirit in the person. While there is common scientific language for the diagnosis, treatment and curing of disease in the biomedical model of healthcare, a broad and inclusive definition of the spiritual dimension of the person is elusive and fraught. Indeed, the very suggestion of a spiritual dimension in some quarters is risky and can collide with barriers erected by different philosophical positions, cultural background, religious traditions, or political correctness.

Spirituality can be defined as the life-principle that pervades a person's entire being and which integrates and transcends his or her biological and psychological nature. While spirituality may be expressed through religious ritual and beliefs, it is different from religion. Spirituality is also intimately linked with an individual's culture, which further illustrates why the concept of spirituality does not always fit easily into the western biomedical focus on health and illness. For example, in Māori culture, the concept of te taha wairua - the spiritual component of health - understands individual and family health as being linked with the health of the land and with those who have gone before.

Every person has an innate spiritual dimension and this quality is distinct from other cognitive and physical abilities. In its broadest sense, spirituality defines the human being, as moral theologian, Dennis Billy (2004), observes:

Human beings have the capacity to define themselves in terms of an ultimate end...To truly understand people, one needs only to look at their ultimate goal in life and what they do to achieve it. This combination of goals, attitudes, and practices is nothing other than their 'spirituality'. (p.81)

Although the spiritual dimension is the deepest and most pervasive dimension of human existence, it is also the most difficult to express. It is "usually very difficult for people to get in touch with, understand, and then articulate what these deepest yearnings are". (Billy, 2004, pp.81-82)

A recent Newsweek feature article on "Spirituality in America", suggested several ways in which the spiritual dimension of life is expressed in practice. Lutheran theologian Martin Marty describes three types of "sometimes parallel but often divergent routes" in the American spiritual journey. He says that "most people pursue their search in traditional sanctuaries, though often in untraditional ways". This group is characterised by increasing openness to different forms of "ecumenical" worship, new expressions of traditional liturgies, and significant growth in Pentecostal religions. A second group combines and expresses spirituality through social activism. A third group is described by Marty as men and women who consider themselves "spiritual but not religious". The latter group

... shun the disorganised fronts of what they call 'organised religion', and go their own way, sometimes finding new company...The adventurers consider themselves pilgrims on solid ground, joining all the others on the paths of the never-ending newly prospering spiritual journey ... (Marty, 2005, p.65)

While spirituality feeds and nurtures the individual in a variety of ways, Catholic moral theology emphasises that it does so precisely in, and through, community. Indeed the moral life is born out of spirituality, leading moral theologian Richard Gula to describe morality and spirituality as "inseparable siblings". For Gula, "morality without spirituality is rootless" and "spirituality without morality is disembodied" (2004, p.162). Thus spirituality is intimately linked with Christian morality and ethics. Equally, in Christian morality, spirituality provides the rationale for human dignity and recognition of human dignity is intimately linked with the well being of the human community.

Understanding Suffering

For the sick, and for their families, spiritual concerns and spiritual pain are a primary cause of suffering. While there is no direct correlation between a patient's physical condition and his or her experience of pain and suffering, spiritual concerns and spiritual pain often centre on the question of meaning.

In his germinal work, The Nature of Suffering and the Goals of Medicine, New York clinician Eric Cassell describes the "topology" of a person – various aspects of which act as a filter, or a lens, for the question of meaning in suffering and pain. This topology helps build a richer understanding of the myriad dimensions of the person, and also reveals how the dignity of the human being can be under threat spiritually when an individual is suffering from terminal, chronic, or dementia-related illness.

Suffering is fundamentally and profoundly personal. It can occur in relation to any of the multifaceted aspects of the person. These particular aspects all impact differently on the spiritual dimension of healthcare, especially at the end of life. While enriching our understanding of personhood and illustrating the potential for injury and suffering that exist within the patient, Cassell rejects any understanding of suffering that is not holistic. Simply put, patients cannot be reduced to any one of their parts:

Reductionist scientific methods, so successful in other areas of human biology, are not as useful for the comprehension of whole persons... Consequently, any suggestion of mechanical simplicity should disappear from my definition of suffering. All these aspects of personhood – the lived past, the family's lived past, culture and society, roles, the instrumental dimension, associations and relationships, the body, the unconscious mind, the political being, the secret life, the perceived future, and the transcendent-being dimension – are susceptible to damage and loss. (Cassell, 1991, p.105)

Spiritual Care of the Patient Suffering from a Dementia-Related Illness

Addressing the spiritual dimension of the patient suffering from a dementia-related illness is a significant challenge, not least because the patient narrative is the result of a complex and essentially holistic interplay between body, mind and spirit. The impact of illness will necessarily be mysterious and multi-dimensional for the patient and for his or her family. However, even when particular predicates of personhood are clearly lacking, as in the patient suffering from profound dementia, human dignity remains in its fullness – and a unique human individual remains. This individual is unique precisely because of the holistic interplay between mind, body and spirit, that had taken place since the moment of conception and which continues to do so during his or her illness, albeit in a deeply mysterious way.

While Alzheimer's disease is not the only cause of dementia, it is by far the most common form of dementia-related illness. All the aspects of personhood described earlier are damaged to a greater or lesser degree in the patient with Alzheimer's. The ability to relate or learn new skills, the ability to remember short-term and long-term, and the ability to make decisions are gradually lost as dementia progresses. As muscular condition and freedom of movement decrease, lifetime habits of personal care may also be neglected and ultimately forgotten. The patient and his or her family find themselves on a journey once poignantly described by Nancy Reagan as, "the long goodbye".

For the patient, the loss of identity associated with Alzheimer's disease reveals itself with a gradual disconnection from previously cherished roles. This is often associated with increasing agitation and disorientation, even in well-known environments. Language and thinking can become muddled and the present moment can be confused with past realities. Just as the customary patterns of daily life are fractured by the presence of dementia-related illness, so can the familiar reassurance of regular religious ritual and faith practices be lost as the patient's cognitive abilities disintegrate. Ultimately, the patient's loss of connection with roles and environment extends to lack of identification of family, to the point where both parties become strangers to each other.

These examples illustrate some of the causes of deep spiritual suffering for the patients and families affected by dementia-related illness. James Keenan eloquently outlines four defining experiences for the patient who suffers. They apply equally to the family:

... first, they find that they are without something necessary for their incorporation with the rest of humanity; second, their personal feeling, experience, or sense of loss heightens their perceived isolation from others; third, they search for a way to renegotiate the future of their lives so that they can recoup whatever humanity that was lost in the first place; and fourth, they look to their many relationships to see who will support them on their search. (James Keenan, 2004, p.69)

Not only does s pirituality provide an integrative function for the individual narrative, enabling a person to make sense of life's losses and successes, failures and achievements, it also has an integrative function for the family and wider community. In recognising the bond of interdependence between the patient and his or her family, spiritual care allows for the possibility of healing and reintegration for patient, family and caregiver.

Spiritual care is an implicit – and explicit – recognition of the human dignity of the patient with dementia. Through such care the community "carries" the sense of the transcendent for the patient who struggles at the edges of life. Equally, such care carries with it a sense of meaning and belief in the transcendent for the patient's family who may have lost sight of such dimensions through exhaustion, or grief, or both.

Conclusion

Ultimately spirituality is a work of love and intimately linked with ethics and morality. While spirituality can be shaped and reshaped by reason and rational argument, it is kept alive and nurtured by love in action.

As James Keenan (2004, pp.75-85) reminds us, suffering compounds for both patient and family when the sufferer's voice is lost. Suffering is that much greater for the family dealing with dementia when those attributes we associate with identity - memory, cognitive functions, rationality - are lost.

This apparent loss of identity in those with dementia-related illness can lead to their being treated as "things or objects", rather than as unique and respected members of the human community, bearers of the human dignity of which spirituality is an integral part. The provision of spiritual care is in itself a visible acknowledgement of the human dignity of the one who suffers, and an important reaffirmation of the identity of the loved one for the family.

When the community gives the sufferer voice and identity, and does so with a generous spirit through its provision of spiritual care, it "carries" the sense of the transcendent for the sufferer and his or her family. In its actions the community compensates for what is being lost to illness.

References

Billy, D. (2004). Dialoguing with human experience: a challenge to Catholic moral theology. In J. Keating (Ed.), Moral Theology - New Directions and Fundamental Issues. New York: Paulist Press.

Irish Bishops' Committee for Bioethics. (2002). End of life care: ethical and pastoral issues. Dublin: Veritas Publications.

Cassell, E. (1991). The nature of suffering and the goals of medicine. New York: Oxford University Press.

Gold, L., Hehir, B., & McDonagh, E. (2005). Ethical globalisation. Maynooth: Trocaire.

Gula, R. (2004). Morality and spirituality. In J. Keating (Ed.), Moral theology - new directions and fundamental issues. New York: Paulist Press.

Keenan, J. (2004). Moral wisdom - lessons and texts from the Catholic tradition. Maryland: Rowman & Littlefield Publishers.

Marty, M. (2005, August 29 - September 5). "The long and winding road". Newsweek, 65.

McCabe, M. (1996). Clinical response to spiritual issues. In E. Bruera & R. Portenoy (Eds.), Topics in palliative care. New York: Oxford University Press.

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Rev Michael McCabe, PhD
Director
The Nathaniel Centre