Reclaiming Personhood for People with Dementia

RECLAIMING PERSONHOOD FOR PEOPLE LIVING WITH DEMENTIA A PROCESS OF RECONCILIATION December 8, 2015 Dan Lunney (218701) Rev. Dr. Robert Schreiter DS6210: Reconciliation and Forgiveness 1 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) INTRODUCTION Focusing on people living with dementia1 may seem to be an odd emphasis for a paper on the process of reconciliation. Reconciliation is often viewed as the process of healing from grave injustices – whether on personal, communal, societal, or national levels. Reconciliation and forgiveness are seen as two sides of the same coin. In this paper, the focus will not be on sin per se, but on the need for reframing our understanding of the dynamics of dementia and how we view and treat people living with dementia. The prevailing view of dementia leads to alienation and dehumanizing of those who are living with dementia. This paper will take an interdisciplinary approach to counter the prevailing psycho-bio-medical narrative of dementia with narratives which reclaim the personhood of people living with dementia. Woven throughout the paper is John Paul Lederach’s four disciplines for moral imagination: relationship, paradoxical curiosity, creativity, and risk.2 The process of reconciliation is a process of conversion for both people involved and a movement away from the concept of victim and minister toward a relationship based on mutuality. Since this paper is more focused on setting the framework for a different understanding personhood, the focus is not primarily on tools for practice. I hope to develop the framework for praxis in the future. The audience for whom this paper is written is primarily for those in ministry with people living with dementia. I will use dementia and Alzheimer’s interchangeably in this work. Alzheimer’s is the most prevalent form of dementia. In addition, I use “people living with dementia” to emphasize that they are people (as opposed to patient or victim) and they are living (as opposed to suffering) with to retain some agency and recognize their resiliency. My focus is on people living with moderate to severe dementia. 2 John Paul Lederach, The Moral Imagination: The Art and Soul of Building Peace (Oxford: Oxford University Press, 2005), Chapter 4, Kindle edition. 1 2 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) The first section of Part I focuses on the experience of living with dementia in an attempt to give “voice” to their experience. The second section looks at the psycho-biomedical model which forms the main narrative about dementia. Part II turns the focus to Robert Schreiter’s model of reconciliation3 which will form the structure of the remainder of the paper – using the five aspects of reconciliation as sections of the paper. Certain themes, like culture of encounter, personhood and hospitality, will be treated in multiple sections, but the treatment will deepen throughout the paper. Part II begins with a theocentric focus because any discussion of reconciliation begins, continues, and ends in God. This section will highlight characteristics of God which are essential for reconciliation. The next section will layout a spirituality of reconciliation which focuses on Pope Francis’ culture of encounter and the importance of hospitality. The third section of Part II, will develop theories of personhood and a theological anthropology in light of the reality of dementia. The fourth section will take a paradoxical look at the paschal mystery to highlight aspects of God which have come to the fore as people have struggled with the reality of disability and suffering. The fifth and final section will highlight some concepts such as embrace and friendship which can lead us to a new sense of personhood for all made in the image and likeness of God. 3 Robert J. Schreiter, The Ministry of Reconciliation: Spirituality and Strategies (Maryknoll, N.Y.: Orbis Books, 1998). 3 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) PART I: NARRATIVES OF LIVING WITH DEMENTIA4 THE EXPERIENCE OF LIVING WITH DEMENTIA (PHENOMONOLOGY) While I will focus on the psycho-bio-medical aspects of dementia in the next section, I wanted to take more of a phenomenological focus in this section. This is potentially dangerous territory because people with moderate to severe dementia have diminished ability to communicate their experience, so observation and interpretation serves as our source. I attempt to reduce the influence of my bias though using my assessment skills developed over two decades of spiritual care ministry. I also read extensively from a variety of different sources to assist with my assessments. I have a bias in favor of looking more at the abilities that people living with dementia retain rather than to focus on the abilities which they have lost. With people who have moderate to advanced dementia, their lived experience is very much present-focused. People living with dementia often have a disconnection from the past and the future. Their reality is what is happening now. Time and reality can be very fluid for people living with dementia. Because they may experience a disconnection from their narrative through loss of memory, some will create a narrative reality which 4 This section and the following section were written by me and adapted from another paper I am writing this semester entitled, Music, Spirituality, and Memory: Can Music be a Spiritual Practice for People Living with Dementia. The respective papers take the information from these sections and develop it different was based on the focus of the given paper. Both papers will serve as resources for my D.Min. thesis. 4 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) incorporates parts of his/her autobiography. The narrative reality can be quite elaborate and creative.5 For example, one resident on some days will identify herself as a Franciscan Sister, even using the name she had when she was in the convent decades ago before she left the community. For her, this is an attempt to claim her identity as her connection to her present narrative becomes more tenuous. As human beings, we have such a strong need for meaning-making, that we will do all we can to makes sense of our experience. Human beings have a need for connection because we are inherently social beings. This need for connection does not leave just because a person is living with dementia. It can be more difficulty for us to connect with people living with dementia and for them to connect with us because of the diminishment of language ability and social skills. This just means that we have to be more creative in our modes of communication and interactions. A profound loneliness can be a common experience for people living with dementia because many of their friends and/or spouse have died or they have lost connection with friends. In addition, many places of social interaction, including church communities, are not structured to welcome the person living with dementia.6 “Psychologist Donald Spence defines the concept of ‘narrative reality’ as the ways in which stories and places help link the ‘true’ world to one that a person is better able to understand, using storytelling as a vehicle to understand the truth—you’re in a place that’s holistically normal, you’re not lost, etc.” from Josh Planos, "The Dutch Village Where Everyone Has Dementia," The Atlantic, November 14, 2014, accessed November 21, 2015, http://www.theatlantic.com/health/archive/2014/11/the-dutch-villagewhere-everyone-has-dementia/382195/. Due to the limited focus of this paper, I will not develop the concept of narrative reality further. 6 John Swinton, Dementia: Living in the Memories of God (Grand Rapids, Mich.: William B. Eerdmans Pub., 2012), Chapter 4, Kindle edition. 5 5 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) The experience of dementia is also influenced by our culture, especially the pervasive youth-focus in the United States society. There is also a strong emphasis on the importance of independence and autonomy. In addition, our culture buys into the overemphasis on rationality. Each of these cultural streams alienates people living with dementia. The person living with dementia can feel exiled from her/his community and family which can reinforce the feelings of disconnection, alienation, and loneliness. The need to feel safe and secure is more acute in people living with dementia. A person living with dementia can feel like a stranger living in a strange land. Through creating a safe and welcoming environment, we can help the person from becoming overwhelmed by the unfamiliarity of her/his environment. Routine can also help people living with dementia from feeling overwhelmed. Glenn Weaver has a very interesting essay which seeks to get at the spiritual experience of people living with dementia. He describes why the usual spiritual practices get more difficult as the neurological deterioration progresses: Upsets in memory, agency, and perspectivity combined to frustrate patients' abilities to plan and execute strategies for reading, constructing, listening to, or visually following most textually based presentations. This included reading Scripture, listening to sermons, or following the order of a worship service.7 Table 1: Spiritual experiences of people living with dementia: Weaver's findings from interviews with caregivers8 1. Loss of one's spiritual life narrative (for example, memories of formative spiritual experiences, baptism, communities of faith) 2. Fear of spiritually sinister forces; sense of spiritual emptiness 3. Diminished participation in spiritual practices, such as corporate worship, reading Scripture, and prayer 7 Glenn Weaver, "Embodied Spirituality: Experiences of Identity and Spiritual Suffering among Persons with Alzheimer's Dementia," in From Cells to Souls, and Beyond: Changing Portraits of Human Nature, ed. Malcolm A. Jeeves (Grand Rapids, MI: W.B. Eerdmans, 2004), Kindle edition. 8 Weaver, "Embodied Spirituality: Experiences of Identity," in From Cells to Souls. 6 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) 4. Difficulty experiencing God's presence, comfort, and security 5. Experienced guilt about the loss of close relationships in a community of faith 6. Inability to initiate acts of service to others Creativity is needed to find ways of being more inclusive of people living with dementia. As will be discussed in Part II, reclaiming of personhood and the process of reconciliation includes recognizing that God is intimately involved in all aspects of life. A person does not lose his/her need to feel connected to God, other people, and creation, it just becomes more of a challenge as dementia worsens. THE PSYCHO-BIO-MEDICAL MODEL OF DEMENTIA The psycho-bio-medical model of dementia focuses on the pathologies of dementia. Dementia is not a single disease rather a syndrome which manifests differently in each person. According to the Alzheimer’s Association, 5.2 million currently are living with Alzheimer’s, by 2050, the estimate is 16 million will be living with Alzheimer’s. Women are disproportionately impacted making up 2/3 of those living with Alzheimer’s and 3 out of 5 of the unpaid caregivers. From 2000-2010, the prevalence of deaths from Alzheimer’s increased by 68%.9 In a person with dementia, the ability of the cells within the brain to communicate with each other is hindered. The symptoms of dementia depend on the parts of the brain which are impacted. Some common symptoms include: memory loss, diminishment of the ability to complete activities of daily life, diminishment of the ability to Alzheimer's Association, ed., 2014 Alzheimer’s Disease Facts and Figures (2014), accessed August 9, 2014, http://www.alz.org/documents_custom/2014_facts_figures_fact_sheet.pdf. 9 7 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) communicate, diminishment of the ability to make decisions, diminishment in alertness, and diminishment in the ability to reason. 10 Table 2: Colling's taxonomy of passive behaviors of people with dementia11 Category Diminution of cognition Diminution of psychomotor activity Diminution of emotions Diminution of interactions with people Diminution of interactions with the environment Definition Lessening of mental processes associated with thinking and knowing. Decrease in the spontaneous and purposeful performance of voluntary motor movements. Decrease or absence of the ability to experience or respond to human emotions. Lessening of behaviors indicative of or necessary to acting upon or with another or others. Lessening of behaviors indicative of or necessary to acting upon or with the physical surroundings. In addition to the symptoms listed above, there are some common secondary challenges which people with dementia face which may include: depression (clinical), agitation, acting out, and repetitive compulsive behaviors. Because agitation can be a characteristic secondary symptom of dementia and much of the research focuses on agitation, I will turn attention to agitation. Agitation occurs in 48-82% of nursing home residents living with dementia.12 While this is quite a 10 "What Is Dementia?," Alzheimer's Association, last modified 2015, accessed November 21, 2015, http://www.alz.org/what-is-dementia.asp. 11 Kathleen Byrne Colling, "A Taxonomy of Passive Behaviors in People with Alzheimer's Disease," Journal of Nursing Scholarship 32, no. 3 (September 2000): accessed October 17, 2015, DOI:10.1111/j.1547-5069.2000.00239.x. 12 Eva S. van der Ploeg and Daniel W. O'Connor, "Evaluation of personalised, one-to-one interaction using Montessori-type activities as a treatment of challenging behaviours in people with dementia: the study protocol of a crossover trial," BMC Geriatics 10, no. 3 (2010): Page 1 of 6, accessed October 17, 2015, doi:10.1186/1471-2318-10-3. 8 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) range, it is safe to assert that a majority of people living with dementia in nursing homes experience agitation. The most common treatments for agitation are analgesics (pain), antidepressants (clinical depression), and antipsychotics (psychosis). Van der Ploeg, et al. highlight three paradigms which have emerged to explain behavioral and psychological symptoms (BPSD) in people living with dementia: 1. Learning theory asserts that BPSD are reinforced by receiving attention from a caregiver 2. In the “unmet needs” paradigm, the agitation is an attempt to communicate a need 3. In the “threshold stress model, the agitation is a result of the reduction in the ability of a person with dementia to deal with stress resulting in acting out.13 My assessment is that there are elements of all three displayed in the agitation displayed by people living with dementia. One of the paradigms may be more prominent in a given episode or in a given person, but all three play a role. Because of the dynamic interaction between the three, interventions must be targeted and individualized. There is an effort reduce the amount of psychotropic medications to address agitation because of the potential of adverse side effects and research showing the limited effectiveness in addressing agitation in many cases.14 13 van der Ploeg and O'Connor, "Evaluation of personalised, one-to-one," Page 2 of 6. van der Ploeg and O'Connor, "Evaluation of personalised, one-to-one," Page 1 of 6. I want to be cautious not to throw out the use of the medication all together because they can be very effective when used properly. The focus is to tailor the response to the individual person and use a variety of interventions including individualized music. 14 9 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) PART II: SCHREITER’S MODEL OF RECONCILIATION RECONCILIATION IS THEOCENTRIC God is the beginning and end of the process of reconciliation. In shifting our perceptions and inclusion of people living with dementia, we are participating in God’s work. With the turn to the subject, much theology in the later part of the last century remained anthropocentric and androcentric because of the prevailing patriarchal structures and the focus on the individual. Human beings and men were viewed as being the center of the theological endeavor. There was a potential for God to be made in the image of human beings and human beings to be considered the pinnacle of creation in these theologies.15 With the rise of contextual, identity, and liberation theologies, the voices of those who were previously neglected began to be recognized. The traditional static images of God were challenged by listening to those who previously had no voice. Our spiritualties and theologies entered into a dialogue with a more diverse array of experiences and voices which has expanded our concept and images of God. Women, the 15 See: Elizabeth A. Johnson, Ask the Beasts: Darwin and the God of Love (New York: Bloomsbury Continuum, 2014), Preface, Kindle edition. “While writing this book I was somewhat daunted to discover that Karl Rahner, whose turn to the subject in theological method has greatly influenced my own thought, once declared, “The whole of Christian theology should, in the right sense of the word, be ‘subjective.’ It cannot speak of objects that are situated beyond the spiritual, personal, free human reality. We cannot make a theological statement about a ladybug.” 10 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) oppressed, people with dementia and other disabilities, and even creation are given “voice” to shape our understanding of God. Steven Bevans and Roger Schroeder highlight characteristics of God which are central to our understanding of God and essential for participating in God’s work: God is a Movement, an Embrace, a Flow…God is not even static within Godself as such. God in God's deepest identity is a relationship, a communion...God is Mission. This is what God is in God's deepest self: selfdiffusive love, freely creating, redeeming, healing, challenging that creation. 16 God’s very nature is relational. The relationship and community of the Godhead, Son, and Holy Spirit provide guidance on how we are to relate to one another. God has a preferential love for the poor – the “other”, the marginalized, the oppressed, and the forgotten. No one is outside of the love of God. As Pope Francis stresses, God is a God of mercy, never tiring of welcoming us.17 Cardinal Kasper lifts up mercy as an expression of God’s essence.18 Especially important for the process of reconciliation with people living with dementia is God’s memory. God has not forgotten those living with dementia. God’s memory is an important theme in Scripture.19 Although a person living with dementia may forget who God is, God does not forget who the person is. 16 Stephen B. Bevans and Roger Schroeder, Prophetic Dialogue: Reflections on Christian Mission Today (Maryknoll, N.Y.: Orbis Books, 2011), Chapter 1, Kindle edition. 17 Pope Francis, The Face of Mercy (Boston: Pauline Books and Media, 2015), Adobe PDF. 18 Walter Kasper, Mercy: The Essence of the Gospel and the Key to Christian Life, trans. William Madges (New York: Paulist Press, 2014), Chapter 4, Kindle edition. 19 David Keck, Forgetting Whose We Are: Alzheimer's Disease and the Love of God (Nashville: Abingdon Press, 1996), Pages 45-48. 11 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) RECONCILIATION AS SPIRITUALITY As noted above, religious experience and practices can be more difficult as the dementia worsens. Recognizing and affirming the abilities a person living with dementia has can be very important for those of us in relationship with people living with dementia. We need to create a culture which allows them the opportunity to affirm their abilities as well as accept our responsibility to help in areas in which they struggle. Pope Francis stresses the importance of creating a culture of encounter which has many parallels with the Christian practice of hospitality. Creating a culture of encounter means having a heart formed to meet the other with radical openness, honesty, and love. In a document for the Year of Faith in 2012, Cardinal Bergoglio (Pope Francis) describes the spirituality of a disciple: 1. It challenges us to discover that the sad reality we see around us can change. Even though it seems that death reigns in its various forms, and that our history is governed by the law of the strongest (or the cleverest), and that hatred and ambition are the driving forces of so many human struggles, we are also absolutely convinced that it will ultimately change, because “if God is for us, who is against us?” (Rom 8: 31). 2. It challenges us to have the heart of a child. It supposes that we won’t be ashamed to still believe in the impossible. We can live in hope: the only thing that can give meaning to history and transform it. As God’s children, we can ask unceasingly, pray without weakening, and adore him so that our vision may be transfigured. 3. It leads us to have “the same mind as Jesus Christ” (see Phil 2: 5), so that each of us might discover a new way of thinking, communicating with and looking at one another, respecting one another, living family life, planning our futures, and living our vocations. 4. It means being active, trusting in the power of the Holy Spirit who is present in the Church and visible in the signs of the times. It means joining the constant movement of life, and of history, without falling into the paralyzing defeatism of believing that everything in the past was better. It is an urgency to think in new 12 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) ways, offer new suggestions, and express a new creativity, kneading life with the new leaven of “sincerity and truth” (see 1 Cor 5: 8). 5. It implies that we have eyes for wonder and a heart that is not a lazy creature of habit. We are able to realize that every time a woman gives birth, it is another bet placed on life and the future; that, when we guard the innocence of children we are guaranteeing the truth of tomorrow; that when we treat gently the life of a selfless elderly person, we are acting justly and embracing our own roots. 6. It means work lived with dignity. It means a vocation to serve with the self-denial of one who begins time and time again without giving in to weariness, as if it were all only one step on the journey towards the kingdom, the fullness of life. It is the quiet time of waiting after the daily planting; it is the contemplation of the gathered harvest, giving thanks to the Lord because he is good, asking him not to abandon the work of his hands (see Ps 138: 8). 7. It demands that we struggle for liberty and life together with others. Even when the surrounding culture abandons its principles, we know with certainty that the Lord asks us to live justly, love goodness, and walk humbly with our God (see Mi 6: 8). 8. It entails the ongoing conversion of our attitudes, the tone of our life. It demands a total reformulation, not just a patching up or a coat of varnish. It means accepting the new form that Jesus Christ imprints on whoever is touched by his hand and his Gospel of Life. It means doing something entirely new for society and the Church, because “He who is in Christ is a new creature” (2 Cor 5: 17– 21). 9. It leads us to forgive and to know how to bring out a smile. It means approaching every person who lives on the margins of existence and call him or her by name. It means caring for the fragility of the weakest and supporting their trembling knees in the certainty that whatever we do for the least of our brothers, we do for Jesus himself (see Mt 25: 40). 10. It demands that we celebrate life. We let ourselves be transformed, for we have been made one with Jesus at the table of the Eucharist, celebrated in community. We go on from there, our hands and heart busy working on the great project of the kingdom, knowing that all the rest will be given us besides (see Mt 6: 33). 11. It means being a Church of open doors. It’s living in the spirit of the Vatican Council and of Aparecida20, 1 not just to let people in, 20 Aparecida: A meeting of the Latin American and Caribbean bishops in Aparecida, Brazil, May 13– 31, 2007. Cardinal Bergolio (Pope Francis) was the lead author of the documents from Aparecida and much of what has been developed in his papacy has roots in these documents. 13 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) but to go out and fill the lives of the people of our times with the Good News. 12. It means being convinced of the Church’s mission— to be a church that lives, prays, and works with a missionary outlook. It is the acceptance of the newness of life in the risen Christ. We accept that he has been raised in our poor flesh to make it a sign of a new life. Meditating on all these things, we look to Mary. May she, the Virgin Mother, accompany us as we cross the threshold of faith and bring the Holy Spirit over our Church, as in Nazareth, so that just like her we may adore the Lord and go out to announce the marvels he has done in us.21 The characteristics of God highlighted in the last section flow into the twelve characteristics of a disciple listed here. Interaction with a person with dementia must always be done in a way that affirms her/his dignity and respects the conflict that losing abilities may have for the person with dementia. For example, allowing someone with advanced dementia to feed him/herself can demand much patience and cleaning up afterwards, but it can also help him/her have a sense of dignity at being able to have some level of autonomy. As mentioned above, there are parallels between the culture of encounter and the tradition of hospitality. Christine Pohl points out that, although hospitality is found in many traditions and cultures, the distinctiveness of Christian hospitality is that there is an emphasis on providing hospitality even though they may not be able to return the hospitality.22 John Swinton looks at the important tradition of welcoming of the stranger 21 Jorge Cardinal Bergoglio, "Crossing the Threshold of Faith: An Invitation," in Encountering Christ: Homilies, Letters, and Addresses of Cardinal Jorge Bergoglio, by Pope Francis (New Rochelle, NY: Scepter Publishers, 2013), Kindle edition. Italics in the original. I chose to use such a long quote because Cardinal Bergoglio (Pope Francis) captures the many dimensions of a spirituality of discipleship and does it in a very well written way. I look forward to the opportunity to unpack and discuss each of the twelve in a future paper. 22 Christine D. Pohl, Making Room: Recovering Hospitality as a Christian Tradition (Grand Rapids, MI.: W.B. Eerdmans, 1999), Introduction, Kindle edition 14 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) which is central to hospitality. 23 Hospitality is about creating a sense of home when one is away from home. Creating the culture of encounter demands taking a risk to move out of our comfort zone to meet the person living with dementia in her/his comfort zone. This is important to keep in mind as we move to the next section to develop a more inclusive theory of personhood and theological anthropology. RECONCILIATION AS A PROCESS OF NEW CREATION In order to have a process of new creation, the reality of dementia leads us to develop a theological anthropology and theory of personhood which does not exclude people living with dementia. Even the discussion of spirituality of discipleship and hospitality above are biased in favor of those with intact cognitive abilities because the agency is on the side of the person who is cognitively intact. Human beings and creation are limited (finite) and not God (contingent). In Western culture there are attempts, unsuccessful though they may be, to escape our finitude. The obsession with youth and avoidance of death can be symptoms of denial of our finitude. Acceptance of our finitude can be liberating because we do not have to strive to be what we are not. Finitude points to the absolute gratuitousness of God’s gift of creation.24 Paradoxically, we are most free when we are honest about our limitations. 23 Swinton, Dementia: Living in the Memories, Chapter 10. For more on finitude see also: Douglas John Hall, God and Human Suffering: An Exercise in the Theology of the Cross (Minneapolis: Augsburg Pub. House, 1986), Chapter 2, Kindle edition. See also: Edward Schillebeeckx, Jesus: An Experiment in Christology, vol. 6, Collected Works of Edward Schillebeeckx (New York, NY: Bloomsbury T & T Clark, 2014), [Page 629], Kindle edition. See also: Swinton, Dementia: Living in the Memories, Chapter 7. 24 15 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) Although our limitations may be different from those who are living with dementia, we are united in a common humanity which shares finitude and limitations. Bishop Robert Morneau provides a helpful reminder about the importance of recognizing limits: The human person is made with infinite longings; the human person is made with limitations and finitudes that thwart our insatiable hungers. Frustration reigns when our expectations are out of line with reality. To expect more than is possible takes us down that slippery road of neurosis. False expectations can lead to sin when anger sweeps through the soul, an anger at God for constructing a world of such complexity.25 John Swinton describes the social stigmatization faced by those with cognitive impairments, “The primary loss within the lives of people with profound intellectual disabilities is not the loss of intellect; rather, it is the loss of value placed on them by a society whose systems of valuing render them worthless and frightening.”26 Rather than seeing that all of us are limited in different ways, society forces those living with dementia to the margins and even questions their personhood. Thomas Kitwood developed a theory of personhood which does not exclude those living with dementia, is person-centered, and has become the standard of care for people living with dementia. Person-centered care, especially as defined by Kitwood and paralleling Lederach and Bishop Desmond Tutu, recognizes that people are relational and social by nature.27 Rather than defining personhood based on a static set of abilities, 25 Robert F. Morneau, Reconciliation(Maryknoll, N.Y.: Orbis Books, 2007), Chapter 2, Kindle edition. Bishop Bob is the pastor of my parish in my hometown of Green Bay, Wisconsin. 26 John Swinton, "The Importance of Being a Creature: Stanley Hauerwas on Disability," in Disability in the Christian Tradition: A Reader, by Brian Brock and John Swinton (Grand Rapids, MI: William B. Eerdmans Pub., 2012), Pages 517-518, Kindle edition. 27 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), Pages 230-231. See also: Lederach, The Moral Imagination: The Art and Soul, Chapter 4. See also: Desmond Tutu, No Future 16 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) Kitwood’s theory of personhood allows for range of abilities and development which can change throughout one’s life.28 Kitwood critiqued the prevailing psycho-bio-medical model and narrative as a cause of worsening symptoms of dementia through the pathologizing of dementia and neglecting the detrimental effects of the pathologizing. The psycho-bio-medical model and narrative draws “malignant social psychology” upon the elderly person, “whose psychological buffers are already fragile, to actually create neurological impairment.”29 This is important to stress, the progression of dementia is not solely the neurological deterioration in the particular person but is compounded and worsened by the obstacles placed by society and the loneliness and isolation caused by stigmatization, neglect, and alienation.30 The practical theologian John Swinton highlights two causal factors for neurological impairment described by Kitwood: First, he wants to loosen the hold that the standard paradigm has on our understanding of dementia and create a space for a different approach that takes care and relationships as seriously as neurological decline, deficit, and damage. He wants to initiate a new story which will present us with a new worldview. Second (and this is a connected goal), he wants people to realize that they may be implicit in the creation of the symptoms of dementia. No longer can we avoid responsibility for dementia by blaming it all on neurology. If Kitwood is correct, without Forgiveness (New York: Doubleday, 1999), Chapter 2, Kindle edition. “’My humanity is caught up, is inextricably bound up, in yours.’ We belong in a bundle of life. We say, ‘A person is a person through other persons.’ It is not, ‘I think therefore I am.’ It says rather: ‘I am human because I belong. I participate, I share.’ Tutu, Desmond (2009-02-04). No Future Without Forgiveness (Kindle Locations 431-433). The Crown Publishing Group. Kindle Edition. 28 Kitwood, Baldwin, and Capstick, Tom Kitwood on Dementia, Pages 230-231. 29 Kitwood, Baldwin, and Capstick, Tom Kitwood on Dementia, Page 37. 30 See also: Thomas E. Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality (Grand Rapids, MI: Brazos Press, 2008), Introduction, Kindle edition. “…it is not the impairment itself but the community that is disabling, insofar as it makes rules that draw attention to certain impairments as threats to normal role performances.” 17 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) then society may well have a profound responsibility for causing the symptoms of dementia rather than simply responding to them.31 Kitwood formed two conclusions about people living with dementia. The first is that they are far more resourceful than we once assumed. I see this in the residents that I have the honor of getting to know who are very creative in their coping mechanisms. The second is “the course of a primary degenerative dementia is far less fixed than was previously believed; it is open to change as a result of purely human intervention.” 32 After the initial period of worsening which is caused by being in a new environment, many residents experience improved functioning in the nurturing environment of our facility. Swinton stresses that our capabilities are not what makes us human persons (thinking, communicating, etc.) rather they emerge from human persons. In other words, “These things might be considered aspects of persons, but they emerge from persons rather than being definitive of persons.”33 The symbol of an image in a hologram seems to be an apt metaphor for the essence of personhood. A hologram maintains the image of the whole even in the fragments. The essence of the person does not leave just because the person has diminished cognitive ability – the person remains a person made in the image and likeness of God – as long as the person is alive. Even after death, our respect for his/her body recognizes that he/she was a person. 31 Swinton, Dementia: Living in the Memories, Chapter 4. Kitwood, Baldwin, and Capstick, Tom Kitwood on Dementia, Page 235. 33 Swinton, Dementia: Living in the Memories, Chapter 7. 32 18 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) Memory is a communal function and held in sacred trust in a relationship. As Schreiter points out, a loss of memory is a loss of identity. 34 That is why it is so important for loved ones to carry on the narrative of a person as the person loses his/her ability to remember him/herself. 35 The loss of memory is the failure on the social level, but the suffering has the greatest impact on the individual. Creativity is needed to find ways of nurturing memories which can help people who are living with dementia remember who they are and lessen the loss of the integration of self. With the recognition of the personhood of the person living with dementia, there is a shift in the encounter from one of power differential to one of mutuality in which both people contribute to the relationship. Jennie Weiss Block shares an experience early in her ministry in which she spent time with a young boy with profound cognitive and physical challenges. She watched the interaction between the young boy and his carepartner and had a revelation which she described as a Transfiguration in which she experienced what the disciples experienced, “…looking around they saw only Jesus.”36 A new theological anthropology arises from reflecting on the experience of disability. Thomas Reynolds develops his theological anthropology through reflections on having a son living with Asperger’s syndrome. Reynolds’ thesis is: there is a strange logic to the Christian witness, one that gives testimony to a strength that comes through weakness, a wholeness that manifests itself in brokenness, a power that reveals itself through vulnerability. The logic here is paradoxical and subversive. Rather than idealize vulnerability, it produces what I 34 Robert J. Schreiter, Reconciliation: Mission and Ministry in a Changing Social Order (Maryknoll, N.Y.: Orbis Books, 1992), Chapter 2, Kindle edition. 35 See: Swinton, Dementia: Living in the Memories, Chapter 9. See Also: Weaver, "Embodied Spirituality: Experiences of Identity," in From Cells to Souls. 36 Jennie Weiss Block, Copious Hosting: A Theology of Access for People with Disabilities (New York: Continuum, 2002), Pages 90-91. 19 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) shall call a “metaphorical reversal” that exposes the false pretenses of the cult of normalcy.37 As Reynolds points out the “cult of normalcy” excludes many people from the operative definitions of personhood. Those considered normal are granted the status of personhood. Those who are considered abnormal are pushed to the margins or considered to lack personhood. I have the privilege of being guided and led by wonderful residents who are limited in different ways than I am, but they never cease to amaze me with their love and grace. Several residents will kiss my hand after we have sat a while in silence or their faces will light up when they see me. What they are not able to communicate in words, they communicate through gestures. Many people are fearful of engaging with people living with moderate to severe dementia because they do not know how to interact. When discussing my paper with a classmate, he said that his grandmother is living with dementia and he does not know how to interact with her. It is not a matter of his lack of desire, more not having the tools to engage. The usual social protocols and modes of interaction may not be possible with someone living with moderate to severe dementia. Part of the reconciliation process is to provide tools and opportunities to interact with people with dementia. This demands creativity and risk. One easy practice can be to listen to music together. Because music 37 Thomas E. Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality (Grand Rapids, MI: Brazos Press, 2008), Introduction, Kindle edition 20 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) is processed in a part of the brain that remains largely intact even in people with advanced dementia, this can be a way to participate in an activity that both can enjoy. 38 Before moving to the next section, it is essential to stress that the reconciliation process of reclaiming personhood for people living with dementia is not only to recognize them in a new way, it is a process for us to reclaim our personhood in a more authentic and inclusive way which makes us a new creation as well. RECONCILIATION FOCUSED ON PASCHAL MYSTERY Schreiter and other authors highlight the importance of the post resurrection experiences of Jesus as being important for our understanding of reconciliation.39 Block highlights that the resurrected Jesus returned with his wounds still present.40 This begins to lead us deeper into the paschal mystery. For the purposes of this paper, the emphasis will not be on achieving an understanding of the paschal mystery for knowledge sake, rather to view the paschal mystery with imagination and paradoxical curiosity as a resource for living. Paradoxically, the death of Jesus is pregnant with emptiness. God in God’s love emptied Godself to experience the crucifixion as an event within God. 41 God’s act of kenosis is purely gratuitous and flows from love. Simone Weil provides insights which flow from her life of suffering as described by Annice Callahan, “She (Weil) wrote of 38 In my paper entitled, Music, Spirituality and Memory, I lift up music as a spiritual practice for interaction, integration, and engagement. I look forward to developing more tools and resources in my D.Min. thesis. 39 See also: Schreiter, The Ministry of Reconciliation, Chapter 2. Given the limited scope of this paper, I am not able to discuss his contributions and insights. 40 Block, Copious Hosting: A Theology, Page 109. 41 See also: Jürgen Moltmann, The Crucified God: The Cross of Christ as the Foundation and Criticism of Christian Theology (Minneapolis: Fortress Press, 1993), Chapter 6. 21 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) God’s self-emptying, taking the form of a slave in Christ. For her creation, the passion, and the Eucharist are all aspects of this movement of God’s withdrawal and abandonment. Creation is, then, God’s loving self-renunciation.”42 God had to become vulnerable and empty Godself in order for creation to happen. Without diminishing the feelings of loss that people living with dementia may experience because they may have experienced the reality of abandonment and loss of identity, it is important to emphasize that God is able to be-with those living with dementia in a special way to provide comfort because God has experienced kenosis – self-emptying – in order to take all into God’s very being. Contributions to our understanding of the vulnerability of God come from those doing theology from the context or lens of disability. Block lifts up the Holy Spirit as a model of inclusion, “As the marginalized member of the Trinity…The Holy Spirit, as promised, is the God who is with us and for us, a companion who not only understands but also experiences marginalization.”43 The kenosis of God has parallels in the spiritual journey – the reality of the unknown is part of the spiritual journey. While running the risk of romanticizing the experience of living with dementia, it is important to lift up the reality of the limits of our knowledge which is common of all human beings. The experience of the hiddenness of God is one that all human beings experience at various times in our lives. Again since we 42 Annice Callahan, Spiritual Guides for Today: Evelyn Underhill, Dorothy Day, Karl Rahner, Simone Weil, Thomas Merton, Henri Nouwen (New York: Crossroad, 1992), Page 81. See also: Weaver, "Embodied Spirituality: Experiences of Identity," in From Cells to Souls. Please note that I chose not to use the original source The Notebooks of Simone Weil because those volumes are out of print and over $150 to purchase. 43 Block, Copious Hosting: A Theology, Page 139. 22 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) put so much emphasis on the importance of knowing, we are not prepared for the unknowing which can be experienced by people living with dementia. The obstacles to religious practices which are described in Table 1, call for an honest view of the paschal mystery which recognizes that there is more unknown than known about the paschal mystery. Our worship, practices, and rituals need to be more open to the mystery which is more experiential and open to all, rather than heady and closed to those with cognitive limitations. We circle back to recognize that we are participating in the flow of God’s ongoing love and creating of which God is the author. RECONCILIATION IS MULTIDIMENSIONAL44 There is not a single response to the reality of living with dementia which could be adequate to bring about reconciliation although there are some characteristics which are essential. The responses must be multifaceted and geared to the need of the individual. In this section, I will lift up some images and models which can be helpful for reclaiming a model of personhood which is more inclusive. All people need love, so any response needs to be relational. Thomas Kitwood discusses the needs that people have that are centered on our need for love: attachment, inclusion, occupation, identity, and comfort.45 I like the image of a flower in bloom that Kitwood uses (see Figure 1) because human flourishing to the level of one’s abilities is central to personhood is a blooming. 44 This section comes more from Schreiter, Reconciliation: Mission and Ministry, rather than from The Ministry of Reconciliation: Spirituality and Strategies. The later focuses on the culmination of reconciliation in the fullness of time for the purposes of this paper I will focus on the multifaceted aspects of reconciliation without denying that reconciliation will not be fully achieved until the second coming. 45 Kitwood, "The Experience of Dementia," Page 19 (Error! Reference source not found.) 23 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) People living with dementia can be too easily dismissed as crazy or less than human by those who lack moral imagination to be creative and paradoxically curious. Figure 1 An illustration of Kitwood's five great needs centered on the need for love. Another image which is important for reclaiming personhood is that of embrace as put forward by Miroslav Volf, “God's reception of hostile humanity into divine communion is a model for how human beings should relate to the other.”46 Embrace can lead to inclusion and attachment as well as provide comfort. We can bask in the love of God. Volk goes on to stress that God’s greatest attribute is love. 47 We return to the practice of hospitality at a deeper level flowing from a vulnerable God. Reynolds asserts, “Hospitality is the Christ-shaped character of God’s reconciling love, displayed not in power but in vulnerability.” 48 Reynolds highlights an eschatological vision in which those who are differently abled are moved from the margins to the center: 46 Miroslav Volf, Exclusion and Embrace: A Theological Exploration of Identity, Otherness, and Reconciliation (Nashville: Abingdon Press, 1996), Page 100. 47 Volf, Exclusion and Embrace: A Theological, Page 105. See also: Hall, God and Human Suffering, Chapter 4. 48 Reynolds, Vulnerable Communion: A Theology, Introduction 24 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) …instead of doing away with impairments and the capacity to suffer, redemption transforms vulnerability into a communion with God, prefiguring the final eschatological horizon to come when all things will become so transformed. An entire “theology of vulnerability” opens up, wherein the marginal and heretofore neglected (i.e., disability) becomes central.49 A reframing of the essence of ability and disability is an important part of reclaiming personhood. The definition of disability must change from being seen as a lack of ability by a person when they run into an obstacle to viewing the obstacle as the problem which needs to be resolved.50 We return to the definition of personhood which is more inclusive, in the words of Swinton, “I am because I am created, dependent, gifted, and loved in all circumstances and for all time”51 It is important for us to reflect on the power of the message as expressed by Paul: For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. (Rom. 8: 38-39) Several of the authors lift up friendship as an important means of moving beyond an “us” and “them” approach to people living with dementia. Mutuality is central to friendship. Block stresses that it is our ability to love and be loved which is key to our 49 Reynolds, Vulnerable Communion: A Theology, Introduction. Reynolds, Vulnerable Communion: A Theology, Chapter 2. 51 Swinton, Dementia: Living in the Memories, Chapter 7. 50 25 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) existence and personhood.52 Jean Vanier connects the communion and friendship with Jesus to the friendship with others.53 Swinton challenges us to respond: We must visit one another — spend time together and offer friendship, respite, relief, listening, and loving presence to both sufferers and carers. We must give people with dementia the benefit of the doubt, and not allow the stories that we assume to be so convincing to prevent us from seeing the face of Jesus in these struggling ones.54 Friendship is living out the love of God in the spirit of encounter and hospitality – but at a deeper level. While recognizing the uniqueness of each person in the relationship, friendship moves away from a power differential that can be inherent in ministry. Through friendship based on mutuality and creativity, we can enter into relationships with people living with dementia which affirms the personhood of both. Friendship can also meet the needs that all of us have for love. I strongly believe that a large part of the high prevalence of agitation among people living with dementia is a result of isolation and disconnection which can be reduced through friendship. Friendship can transform the person living with dementia and those of us who interact with them by affirming a common personhood for each as we are made in the image and likeness of God. 52 Block, Copious Hosting: A Theology, Page 160. Brian Brock and John Swinton, Disability in the Christian Tradition: A Reader (Grand Rapids, MI: William B. Eerdmans Pub., 2012), Page 483, Kindle edition. 54 Swinton, Dementia: Living in the Memories, Chapter 10. 53 26 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) CONCLUSION Entering into a relationship based on mutuality and friendship is an important step in helping to reclaim the personhood of people living with dementia and those who interact with them. It is also important to work to dismantle the obstacles which are disabling in society. This is a process of reconciliation which strives to embrace rather than exclude; to use creativity to affirm the areas of common personhood; to use imagination to create a culture of encounter; to develop a spirituality of hospitality; and to participate in the work of God. People living with dementia face real difficulties and struggles which need to be recognized and they need to have space to grieve the losses. However, we need to recognize how we contribute to the struggles of those living with dementia through our attitudes and structures. There are vastly more areas of commonality between human being regardless of our different areas of abilities. Reconciliation begins, is nurtured, and ends with God. We are participating in God’s process of reconciliation. 27 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) APPENDIX A: BIBLIOGRAPHY Bergolio, Jorge Cardinal. "Crossing the Threshold of Faith: An Invitation." In Encountering Christ: Homilies, Letters, and Addresses of Cardinal Jorge Bergoglio, by Pope Francis. New Rochelle, NY: Scepter Publishers, 2013. Kindle edition. Bevans, Stephen B., and Roger Schroeder. Prophetic Dialogue: Reflections on Christian Mission Today. Maryknoll, N.Y.: Orbis Books, 2011. Kindle edition. Block, Jennie Weiss. Copious Hosting: A Theology of Access for People with Disabilities. New York: Continuum, 2002. Brock, Brian, and John Swinton. Disability in the Christian Tradition: A Reader. Grand Rapids, MI: William B. Eerdmans Pub., 2012. Kindle edition. Callahan, Annice. Spiritual Guides for Today: Evelyn Underhill, Dorothy Day, Karl Rahner, Simone Weil, Thomas Merton, Henri Nouwen. New York: Crossroad, 1992. Colling, Kathleen Byrne. "A Taxonomy of Passive Behaviors in People with Alzheimer's Disease." Journal of Nursing Scholarship 32, no. 3 (September 2000): 239-44. Accessed October 17, 2015. DOI:10.1111/j.1547-5069.2000.00239.x. Hall, Douglas John. God and Human Suffering: An Exercise in the Theology of the Cross. Minneapolis: Augsburg Pub. House, 1986. Kindle edition. Johnson, Elizabeth A. Ask the Beasts: Darwin and the God of Love. New York: Bloomsbury Continuum, 2014. Kindle edition. Kasper, Walter. Mercy: The Essence of the Gospel and the Key to Christian Life. Translated by William Madges. New York: Paulist Press, 2014. Kindle edition. Keck, David. Forgetting Whose We Are: Alzheimer's Disease and the Love of God. Nashville: Abingdon Press, 1996. Kitwood, T. "The Experience of Dementia." Aging & Health 1, no. 1 (1997): 13-22. Adobe PDF. Kitwood, T. M., Clive Baldwin, and Andrea Capstick. Tom Kitwood on Dementia: A Reader and Critical Commentary. Maidenhead, Berkshire: McGraw-Hill/Open University Press, 2007. 28 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) Lederach, John Paul. The Moral Imagination: The Art and Soul of Building Peace. Oxford: Oxford University Press, 2005. Kindle edition. Moltmann, Jurgen. The Crucified God: The Cross of Christ as the Foundation and Criticism of Christian Theology. Minneapolis: Fortress Press, 1993. Morneau, Robert F. Reconciliation. Maryknoll, N.Y.: Orbis Books, 2007. Kindle edition. Pohl, Christine D. Making Room: Recovering Hospitality as a Christian Tradition. Grand Rapids, MI: W.B. Eerdmans, 1999. Kindle edition. Pope Francis. The Face of Mercy. Boston: Pauline Books and Media, 2015. Adobe PDF. Reynolds, Thomas E. Vulnerable Communion: A Theology of Disability and Hospitality. Grand Rapids, MI: Brazos Press, 2008. Kindle edition. Schreiter, Robert J. The Ministry of Reconciliation: Spirituality and Strategies. Maryknoll, N.Y.: Orbis Books, 1998. ———. Reconciliation: Mission and Ministry in a Changing Social Order. Maryknoll, N.Y.: Orbis Books, 1992. Kindle edition. Swinton, John. Dementia: Living in the Memories of God. Grand Rapids, Mich.: William B. Eerdmans Pub., 2012. Kindle edition. ———. "The Importance of Being a Creature: Stanley Hauerwas on Disability." In Disability in the Christian Tradition: A Reader, by Brian Brock and John Swinton, 512-45. Grand Rapids, MI: William B. Eerdmans Pub., 2012. Kindle edition. Tutu, Desmond. No Future without Forgiveness. New York: Doubleday, 1999. Kindle edition. van der Ploeg, Eva S., and Daniel W. O'Connor. "Evaluation of personalised, one-to-one interaction using Montessori-type activities as a treatment of challenging behaviours in people with dementia: the study protocol of a crossover trial." BMC Geriatics 10, no. 3 (2010). Accessed October 17, 2015. doi:10.1186/1471-231810-3. Volf, Miroslav. Exclusion and Embrace: A Theological Exploration of Identity, Otherness, and Reconciliation. Nashville: Abingdon Press, 1996. Weaver, Glenn. "Embodied Spirituality: Experiences of Identity and Spiritual Suffering among Persons with Alzheimer's Dementia." In From Cells to Souls, and Beyond: 29 Reclaiming Personhood for People Living with Dementia 12/8/2015 Dan Lunney (218701) Changing Portraits of Human Nature, edited by Malcolm A. Jeeves. Grand Rapids, MI: W.B. Eerdmans, 2004. Kindle edition. "What Is Dementia?" Alzheimer's Association. Last modified 2015. Accessed November 21, 2015. http://www.alz.org/what-is-dementia.asp.