This past fall (2020) I read John Swinton’s book titled “Dementia: Living in the Memories of God” (2012). It was recommended to me by a good friend who was potentially showing signs of dementia. With this excellent book, Swinton unpacks the experience of dementia through a totally different framework then the one commonly used within Western society. In doing so, he opens up profound ways to see spirituality present within the experience of people living with dementia. In this blog, I want to summarize key insights from his book that help us know how to care spiritually for people struggling with dementia. Swinton begins his book by describing the current framework used in caring for people with dementia, namely a framework that sees dementia as a condition of the physical brain. This leads to what Swinton calls defectology (41), a focus on the pathology of dementia, namely that “dementia is conceived and conceptualized as a series of deficits, malfunctions, and losses” (42). He also creates a distinction between the process of thinking and the process of communicating thought. This difference is a sign of what he labels the hermeneutics of distance (58). Caregivers who are close relationally to people with dementia notice thinking happening despite the fact that the person is finding it hard to communicate thought (58). In the end, Swinton argues that it comes down to “which story one chooses to put one’s faith in”, the ‘impaired thinking’ story or the ‘thinking but impaired communication’ story (58). In his book, Swinton outlines an alternative dementia story, one that goes way beyond the “impaired thinking” story. Swinton begins by stating that “every psychological experience is at the same time a neurological experience and vice versa; the two simply represent the two descriptions of the same event” (76). Every experience can be described neurologically, based on the physical interactions happening in the brain noticed through CT scans and MRIs. This same experience can be described psychologically, based on the changes the person notices in their thoughts, images, emotions, body sensations, behaviors, etc. Furthermore, Swinton notes that “unlike other organs, the brain (like the nervous system) is plastic” (78). By this, he means, the brain’s shape, form, and development are responsive and formed by the environment and the physical and psychological experiences that a person has lived throughout their life (78). In other words, there is an interactive dynamic between our physical neurology and psychological experience of life. Sometimes, our neurology shapes our experience, sometimes our psychological experiences shape our neurology, and sometimes these back-and-forth interactions happen simultaneously. Swinton claims “society may well have a profound relationship for causing the symptoms of dementia rather than simply responding to them” (80). To unpack this connection, he explores what he labels as a “malignant social psychology” (80). The dynamics of malignant social psychology arise in social environments where forms of interpersonal interactions and communications occur that diminish the personhood of those people experiencing that environment” (82). In seeing this negative social psychology present in how dementia persons are treated within the medical system, he does not suggest that that medical model should be rejected. He believes instead that it just needs to be expanded and modified (84). To help his readers understand how this malignant social psychology works, he draws upon the research of Steven Sabat, Professor of psychology. Sabat sees the experience of self actually consisting of three components: self 1, self 2, and self 3. Self 1 refers to how "the person’s experience of himself/herself in the present moment” (95), the sense of me, myself, my, mine, etc. in contrast to yours (94). Clearly, a dementia person has a sense of who they are, even though they forget their names, or the names of those around them (105). “Unless a person is terminally unconscious, Self 1 remains throughout the experience of dementia” (95). Self 2 refers to a person’s sense of identity, their self-concept, and their beliefs about self. It “contains the person’s physical characteristics and their biography coupled with their awareness, interpretation, and valuing of such characteristics and experiences” (95). A dementia person retains an awareness of their Self 2. However, this sense of self, this history and biography, is nurtured in a positive way because those, who love them, work very hard to keep them located in that history (through storytelling, memory books, reminiscences, etc.) (105). by , Self 3 is very different from Self 1 and Self 2 which are controlled by the individual. Self 3 derives from how a person is experienced by others, their community, and the world. It has to do with the way a person presents or is represented to the world (96) and how that relationship to their community or world is supported (97). It is not possible to be a teacher unless students grant you that status. It is not possible for dementia to have a positive public profile unless people respond positively to it (97). It is this Self 3 aspect of the self that is lost when a person gets dementia. They no longer feel valued or reflected by their world, their community, even those close to them. This shift in treatment is most apparent when people ask “does she recognize you?” If the answer is no, people begin disengaging for the dementia person has shifted from being seen by them as a person to a non-person (103). After this discussion about the three aspects of self, Swinton concludes that “dementia emerges out of a complicated dialectical interaction between neurological impairment and interpersonal processes” (107). “Dementia is the product of both damaged neurons and the experience of particular forms of relationship and community” (107) As a result, Swinton concludes “dementia does not entail a loss of mind. Rather it provokes others to presume there is a loss of mind” (108). Furthermore he claims, “dementia does not entail a loss of self. Understood properly, the self remains intact even in the most severe forms of dementia. Any loss of self relates to a failure of community” (108). When seen within this framework, “’symptoms’ of dementia such as aggression, depression, withdrawal, anxiety, and deterioration in emotional control, social behavior, or motivation may not in fact be caused by failing neurological processes alone. When understood properly, they can be seen as reasonable responses to difficult, frightening and frustrating situations” (108). In the book, Swinton now turns to a key question that is at the essence of care for people with dementia. Is the person lost to their illness of dementia? Does their sense of personhood no longer exist? Here Swinton shares stories of how many people are starting to believe this to be the case. The legal system granted a husband release on compassionate grounds for smothering his wife with a pillow who had extreme dementia by arguing partially that his wife ceased to be the woman he married (115-117). Some Christian leaders, like Pat Roberts, have said it is OK to divorce a spouse with dementia for dementia is a type of death (117-118). Some people with dementia, themselves, are choosing Medical Assistance in Death because they don’t want to be a burden to their family or society (120-121). There is a sense in some of these stories that some people believe that people with dementia have a “duty to die”. Swinton claims that the responses to these difficult questions, and the issues they raised, come down to how we understand personhood. Many times, personhood is defined, for legal and ethical purposes, “in terms of a capacity for self awareness, identity, continuity of thinking, a sense of self over time, consciousness, and above all memory” (123). Furthermore, a person is safe as long as those around them value them and offer them relationships that reveal and reinforce the practical meaning of that value (125). In an individualistic society that is prevalent in Western Liberal democracies, “to be a ‘person’ means that one must be able to live one’s life, develop one’s potential, and develop a purposeful life-course without any necessary reference to others” (130). With this understanding of personhood, a person with dementia has little hope of being seen and treated as a person. While this may be an objective view of people of dementia, they are seen as an “it” that has no intrinsic value or sense of “being” outside of what people attribute to them. Is there another way to understand personhood that does not lead to objectifying people into an “it”? At this point, Swinton looks at the essence of person-centred care that is becoming more popular in working with seniors and other settings. With person-centred care, instead of applying general principles that arise from treating people as objects of study, the goal is “to come close to people, to move beyond their diagnosis and to treat them in ways that acknowledge their value and worth” (137). “It implies recognition, respect, and trust and is not based on the presence or absence of particular capacities” (140). When we relate to dementia people in this way, we move from an “I-it” relationship to forming what well-known philosopher Martin Bruber calls an “I-Thou” relationship. Swinton works extensively with Bruber’s understanding of the I-Thou relationship and applies it to caring for people with dementia. It is in this I-Thou relationship that spirituality becomes front and centre. To relate with a dementia person as a Thou “requires a non-objectifying moving toward the Other and into the space between one’s self and the Other” (142). For Buber, the Thou in the I-Thou relationship with another is more than the person’s personhood. When we enter this Thou relationship, we experience both the personhood of the person and the personhood of God. Swinton quotes Bruber when he writes, “As a Person, God gives personal life; he makes us as persons become capable of meeting him and with one another” (146). The best way to understand this notion of Person in the I-Thou relationship is to equate the experience of Person with the experience of Being, the experience of being in the present moment where you experience yourself one with everything and others and no sense of separation between you and your experience of that moment. Swinton describes it this say, “the I-Thou relationship is a place of experiencing, without conceptualizing, of being without knowing. In this sense, there is indeed a deep apophaticism about the I-Thou relationship” (147). When we understand personhood in this way, as the experience of Being that arises in the I-Thou relationship that makes us a human Being, then “to be a person has to do with possessing a way of being rather than a set of capacities ( 155). Seen in this way, where humans are part of a human community of I-Thou relationships, “the dual and unshakable premises of birthright and mutual recognition bind together all of its members. Membership of that community is biological and genealogical and therefore clear and irrevocable” (157). From this understanding of the I-Thou relationship, Swinton unpacks what it means to experience Being in human form. To be human is “to be (1) dependent and contingent, (2) embodied, (3) relational, (4) broken and deeply lost, and (5) loved and profoundly purposeful” (161). Let me unpack briefly how Swinton understands each aspect of being a human being. By being dependent and contingent, Swinton means we, as humans, are totally dependent on God. Everything we receive and experience is truly a gift and expression of Being. “There is nothing that anyone has that has not been given to them” (161). Swinton’s notion of embodiment builds on the Christian theological notion that we, as humans, are both “formed of earth”, that is physical creatures, and “formed by spirit” through God breathing spirit into us (166). This is another way of saying what Swinton describes earlier in his book as humans being both physical/neurological and psychological/spiritual. In terms of Swinton’s third aspect of relational, we experience ourselves on a personal level through relationship with others, self, and Being (178). “To be human,” Swinton notes, “is to be loved; to live humanly is to love” (180). The fourth aspect of being human involves our experience of being broken and fallen. By choosing to turn away from our experience of Being, we develop coping patterns including experiencing our sense of mortality and fear of death which affects every aspect of our life (183). Seen through this lens, dementia is not judged as a sin but rather an aspect of the painful chaotic reality of life. Finally, Swinton concludes that “nothing exists apart from God’s desire for it to exist” (184) This means that dementia has some form of meaning or divine purpose within life. Dementia is not a punishment or the work of the devil but rather “a mystery that is firmly rooted in God’s creative and redemptive actions in and for the world” (184). These five aspects are all elements of our experience of Being in human form, all elements that will arise as we relate in I-Thou relationships with people with dementia, in fact, with any other human being including ourselves. Swinton, toward the end of his book, explores the issue of memory. Polls indicate that people fear dementia more than cancer (187). Furthermore, people have fears like, “if we can’t remember who we are, how can we know who we are” (190). Such fears show how our sense of identity and personhood is often tied up with our memories. There are also fears around people’s faith and the afterlife. Will my loved one with dementia know God or go to Heaven when she dies when she can no longer remember? To answer these questions around memory, Swinton draws upon the reflections of Christine Bryden as she wrestles with her diagnosis of early onset dementia. Swinton writes, “Bryden recognizes that her memory and her cognitive faculties are slipping away. But she frames that slippage quite differently. She trusts that God will remember her. When her memory has gone, her true self will continue to exist and ultimately even flourish in the Resurrection” (194). What does it mean for God to remember us when we have dementia and can’t remember? To answer this question, Swinton draws upon research about human memory. He notes that “memories are constructed not only out of what we think we remember in a historical sense, but also in accordance with our current needs, desires, and the ways we see the world and expect it to be” (p. 208). Our human memories are not accurate tape recordings of our past but rather memories that often shift each time we revisit them based on our beliefs, needs, and longings. As a result, Swinton concludes that “human memory is inevitably flawed and open to deception and distortion. This, combined with our inherent fallenness, means that there is a real sense in which we can never know who we really are” (p 210). However, Swinton claims, “we may be uncertain about who we are, but God is not. God remembers us properly. God remembers us because God knows us” (210). It is apparent God’s memory is quite different from human memory. Swinton highlights that God’s memory “is different not only because it’s not a neurological act, but also because God’s memory holds and remembers us as we actually are, not simply as we think we are or have been” (213). Furthermore, God’s memory does not “simply recall events and actions, not least because past, present, and future aren’t concepts that can be applied to God. God sits outside of time, and thus there is, in a sense, no past to recall and no future to move toward” (214). If God’s memory is not found in our human brains and is also located outside time, that means that the “concept of memory is broader than our standard neurological and psychological definitions” (214). It suggests that God’s memory as well as the divine aspects of I-Thou relationships arise from a place or dimension beyond the physical and psychological dimensions of our earthly world, what the mystic traditions commonly call the "The Unmanifest" or Void. It is from this divine place of memory that God remembers us. However, this sense of God remembering is not God helping us recall our past experiences. Instead, Swinton claims, “when God remembers, God acts” (216). By this, he means that God “re-members” us by restoring us from a fragmented sense of self into a state of wholeness in God (216). Anything God forgets no longer exists (214). It is gone. Anything God remembers become part of our current experience of self. This means that “we are who we are because God remembers us and holds us in who we are. We are who we are now and we will be who we will be in the future because God continues to remember us (218). In conclusion, Swinton asserts, “while many things are forgotten by human beings—indeed, sometimes everything is forgotten—nothing is forgotten by God unless God chooses to forget. There is no reason to think God chooses to forget those who have advanced dementia” (218).
In summarizing the key insights within Swinton’s book, “Dementia: Living in the Memories of God”, it is clear that Swinton’s framework of understanding dementia is very different than the framework people with dementia often experience in the world. His framework of dementia care is more wholistic and person-centred and provides ways for people with dementia to experience God’s spirit in the midst of their dementia experience, even when they no longer have access to their memories. Questions to ponder:
Gord Alton MDiv RP CASC Supervisor Educator
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The Christian season of Advent and Christmas has taken on special meaning for me this year. During this religious time, Christians remember and prepare for the birth of Christ, who we see as the Saviour of the world. What makes this year different from other years is that I am deeply in touch with our need for a Saviour within our world and culture, but also within the people I see in my palliative work and private practice ministry. In this blog, I want to explore this need we all have, whether we know it or not, for a Saviour. Let me begin with the broader context. The reality of COVID-19 has shocked our human civilization to the core. It has revealed how vulnerable we truly are. On the personal level, COVID-19 threatens our physical health, our mental and emotional health, our social and family connections, our paying jobs, and our ability to pay our rent, mortgage, monthly bills, save for retirement, even to buy food for our tables. At the personal level, we have never encountered anything close to this disruption since the Great Depression when my Dad was born some 86 years ago. On the societal and cultural level, the negative impacts have been just as disruptive with many industries, businesses, and organizations struggling to survive financially as COVID-19 challenges our ability to gather safely in any significant numbers whether it be at work, shopping, travelling, eating out, enjoying sports, music, movies, or enjoying religious, cultural, or communal celebrations. With so many aspects of our lives affected or on hold right now, we struggle with how to bring meaning and purpose to our lives. As we grapple with the negative realities of COVID-19 at both the personal and societal levels, there is a profound powerlessness that we feel. There is so much in our lives that is beyond our control to change. It is this helplessness that causes us to look beyond ourselves for help, to search for a saviour that can help restore order to our lives so that we can again feel some sense of power and control over our lives. When people feel such powerlessness, they often look for their saviour in the world, some political or religious leader who can help them deal with their lost of control. I am suspicious that this is why Donald Trump became President of the USA in 2016. Many people, feeling very powerlessness in their lives, saw him as their potential saviour who could save them. We see similar dynamics in our country of Canada with the tremendous pressure Canadians are placing on our political leaders, both national and provincial, in solving our COVID-19 problem. It is a difficult time to be a leader for there is little hope that our political leaders can meet all of these saviour expectations placed upon them. When these expectations are not met, people often crucify the saviours they at one time hoped would save them from their helplessness. This is how our desire for a saviour gets played out in the world. We are looking for a Divine saviour, a Saviour that transcends the human saviours we see in the world. I see this same longing for this type of Saviour very evident in my ministry in palliative care, spiritual direction and psychotherapy. In my palliative care ministry, the issue of powerlessness is front and centre. No one can beat death. I often hear clients share many stories of how they have arisen above many challenges in life, whether it be health, relationships, or financial issues. As one client said to me, “Gord, I have been a problem solver all my life, but I can’t solve this problem.” Most people look to their health care professionals as their saviours, but when clients receive a palliative care prognosis, they realize their heath care saviours have failed them. They feel totally helpless. Their life is outside their control. Now, what human can be their saviour? When I make my first visit as a spiritual care provider, I know that part of the reason I have been invited is to discern if I could be their saviour in some form. Sometimes, I am not invited back for a second time; I was not the “saviour” they were looking for. They don't realize it yet but they are seeking a different kind of Saviour. In my private practice of providing psychospiritual therapy and spiritual direction, I often encounter a similar issue of powerlessness. This is most evident in people who wrestle with mental health like depression, anxiety, addictions, anger, self hatred, compulsion disorders, etc. They find themselves wrestling with emotional and mental dynamics that are beyond their control. The more they try to fix themselves through managing their thoughts, emotions, and behavior patterns, the worst their mental health issue becomes. They feel helpless to fix themselves. Some of them realize they need a Saviour to bring about the transformation and healing they are seeking. However, I have come to realize that this sense of brokenness is not unique to people struggling with mental health. This feeling of fallenness is more universal in nature for I see it also in my spiritual direction ministry. People come to me for spiritual direction with the hope of deepening their relationship with God, others, and all of reality. As they work with me, they soon discover the ego structures within their soul that interfere with their longing to experience oneness with Spirit and life. Most people try to transform themselves by their own efforts though managing their thoughts, emotions, and behaviors and doing spiritual practices with the hope of experiencing God more deeply. But it often does not work for them. The more they try, the more they become frustrated in not feeling the gracious presence of God. They soon realize that they are powerless in deepening their relationship with God. It is beyond their ability. They need someone beyond themselves, a Saviour to help them do something they cannot do for themselves. What do we make of this need for a Saviour that is present both within our society but also the individual soul? It turns out that this human need for a Saviour is not just a present phenomenon but has appeared throughout history. Nicholas Gier, professor of philosopher and religion, wrote an essay in 1979 in the Journal of Dharma titled “The Savior Archetype” where he observes that saviours are at the heart of the major religions. In fact, he noted that there are significant parallels between these “saviors’ attributes, experiences, and plans for human redemption” (Gier, par. 8) . These parallels include:
For those of us raised in the Christian tradition, these traits of the Saviour echo almost exactly with the Saviour of Jesus Christ in our tradition. And yet, as Gier outlines in his article, there are similar stories about Saviours within older religions like Hinduism, Buddhism, and Zoroastrianism. Some scholars have argued that these religious similarities are due to cross-fertilization happening between the different cultures and histories of our world. However, Gier comes to a different conclusion. He claims that the "Savior Archetype was not the result of a direct interchange of ideas; rather, it was sui generis to the various religious cultures. The Savior Archetype manifests itself as something deeply psychological, and, therefore, it is not primarily due to religious syncretism. Edward Carpenter’s assessment is correct: 'It is impossible, I think, not to see that the myriad worship of saviors all over the world, from China to Peru, can only be ascribed to the natural workings of some…law of human and tribal psychology springing up quite spontaneously and independently, and (so far) unaffected by mere contagion of local tradition' (Pagan and Christian Creeds [New York: Harcourt, Brown & Co., 1924], p. 155)" (Gier, par. 10). In other words, Gier claims that the Saviour dynamic or archetype emerges from the soul of humans and the deeper common soul of humanity In saying this, Gier is not claiming that no interchange of religious ideas happened between the religions. There is clearly evidence of some sharing between religions. However, he claims their “research has shown solid parallels in terms of the general characteristics of the archetype, but the specific details are most always different. This leads us to conclude that although the Savior Archetype was in place, each religion supplied its own detail according to its own cultural and religious history” (Gier, par 13). It is important to see this Saviour archetype as more than an expression of our common human need for a Saviour that arises during times of profound helplessness. It goes deeper than that. The Saviour archetype points to a deeper spiritual dynamic within our soul and reality that emerges when we find ourselves in a place of powerlessness, when we surrender and trust a deeper spiritual flow of life. When we embrace these moments of surrender, we often find ourselves being ministered to by a Saviour archetype, what Christians call the Indwelling Christ or God’s Spirit or the Holy Spirit. Followers of other world religions would have their own names for this internal Saviour archetype. When we understand the Saviour archetype in this way, we begin to comprehend how the Saviours found at the centre of the world religion became embodiements of this Savior archetype. They were not born saviours at their births like when a royal couple gives birth to a prince or princess. No, they became Saviours by learning how to be with their powerlessness in a prayerful surrendering way that allowed them to follow and merge with the Saviour archetype that was emerging in their soul. As they united with this Saviour dynamic, they began to embody this spiritual energy and guidance and manifest it into our world through their lives. This is why people came to see these spiritual leaders as incarnations of God or Divine Reality in our earthly world. This is why these humans, like Jesus, became seen as Saviours in our world. I don’t know if this is true for the Saviour figures of the other world religions, but Jesus, in the Christian tradition, never pointed to himself as the Saviour of the World. He was a faithful Jewish rabbi who believed what the Torah taught, that there is no other Saviour besides Yahweh (Isaiah 43:11). Many people, during Jesus’ time and following, have seen Jesus as their Saviour but Jesus always pointed to God as his Saviour. Jesus knew God was the source of every dynamic in his life, the source of his wisdom, the source of his healing, the source of his love, compassion, and grace, the source of his power. In the gospel of John, we read Jesus saying, “I can do nothing on my own, but only what I see God doing; for whatever I perceive God willing, I can do” (John 5: 19). But how did Jesus get to this place of knowing how to allow almost every aspect of his life to be an expression of God’s spirit? Jesus had become a friend to his experience of powerlessness. He knew that every time he was in a place of trust and surrender, the spirit of God would manifest in his life in whatever form that was needed at that time whether it be love, compassion, forgiveness, courage, peace, anger, or acceptance. Jesus had matured in this faith in God to the point where he prayerfully asked himself often, “not my will but your will be done.” From this place of trust, Jesus responded through actions, words, listening, or often non-action by compassionately bearing the suffering of others for that was all that could be done. I think this was the message that Jesus was trying to pass on to his disciples and future followers. He was trying to show them how to follow this God that he was following. He was trying to model for them how to become a friend to their own powerlessness experience. It is only when his followers learned to live from this posture of trusting surrender in God would they become able to “do the works Jesus had been doing, and even greater works then these” (John 14:12). In many ways, Jesus was trying to get his followers to follow the Saviour archetype within their soul, that spiritual dynamic within the ground of all reality that is always present and eternal. Now, we are finally getting to the place of understanding why Advent and Christmas have taken on new meaning for me this year. I am very much in touch with this need for a Saviour, both in our world with its many complex seemingly unsolvable problems but also in the people I meet in my ministries. The experience of powerlessness is very prominent everywhere, and I feel it very much myself. But this is where the season of Advent and Christmas provides me hope. Through doing the spiritual readings and practices associated with Advent, we connect to our powerlessness and begin to touch into our need for and experience of a Savior. We join the Jewish people as they long for the Messiah to come to free them from their oppression and economic struggles found in their daily lives. We unite with Mary and Joseph in their powerlessness as they wrestle with what it means to have a Saviour being born into their personal lives—the waiting, the confusion, the uncertainties, the whys, etc. We also wonder with Mary and Joseph as they receive signs from God in these moments of powerlessness that confirm that God is soon bringing a Saviour into their lives. We identify with Mary’s and Joseph’s helplessness when they discover there is no room for them in any inns in Bethlehem for Mary to give birth to the Saviour within her. Then, we are surprised by the people who are open to receiving this Saviour, lowly shepherds, the outcasts of society, and astrologers and scholars from foreign lands. No religious leaders. No wealthy land owners or powerful leaders. It seems that only people who understand the experience of surrendering, trusting, and following are open to seeing the signs of a Saviour. As we travel this Advent journey, we find that aspects of this Christmas story connect with our own personal story and our need for a Saviour. As a result, when Christmas Day finally does come, we find ourselves celebrating with Mary and Joseph and all the surprising onlookers at the wonder of this miracle. We are not just celebrating the birth of the Saviour born in a manger some 2000 years ago, but we are also celebrating the reality of this Saviour in the midst our lives now. Thanks be to God.
Bibliography Retrieved (Dec 13, 2020) https://www.webpages.uidaho.edu/ngier/307/archetype.htm. (Adapted from N. F. Gier, "The Savior Archetype," Journal of Dharma 4 [1979], pp. 255-267, with additions and deletions) Questions to Ponder:
Gord Alton MDiv, RP, CASC Supervisor-Educator |