Microsoft Word - Mitchell et al corrected proof.docx Corresponding Author: Gail J. Mitchell Email: gailm@yorku.ca Journal of Applied Hermeneutics June 12, 2013 The Author(s) 2013 Dementia Discourse: From Imposed Suffering to Knowing Other-Wise Gail J. Mitchell, Sherry L. Dupuis, & Pia C. Kontos Abstract The authors revisit the troubling discourse surrounding the diagnosis of dementia. A critique of the predominant words and images in health care literature, public discourse, and policy is con- sidered from multiple angles. The authors link the dominant words and images with a form of inter-relational violence. Contrary images grounded in research and experience offer a different view of what it is like to live with a diagnosis of dementia—a view that is life-affirming and based in relationality and possibility. Concepts of embodied selfhood and knowing other-wise are portrayed as doorways to transforming a discourse of violence toward a discourse of compas- sion and ethical relating. Keywords dementia discourse, suffering, embodied selfhood, knowing other-wise In our experience, the diagnosis of dementia, especially Alzheimer’s Disease (AD), in Western society continues to initiate a total- izing process involving suffering, discrimi- nation, isolation, and, in many situations a violence of inter-relating. Our purpose in this paper are two-fold. First, we will re-visit the troubling relationship between the domi- nant medical discourse and consequences for persons with dementia, family care part- ners, and healthcare workers. Second, we will build on the notions of relationality (Dupuis et al., 2012a; Greenwood, Loewen- thal, & Rose, 2002), embodied selfhood (Kontos, 2004, 2005, 2006, 2012; Kontos and Naglie, 2007a, 2007b, 2009) and know- ing other-wise (Olthuis, 1997) in order to heighten attention to the ethical responsibili- ties we all have to persons with dementia. To begin, we show how the discourse sur- rounding dementia is in large part responsi- ble for reproducing the violent and othering (Olthuis, 1997, 2000a, 200b) processes that accompany the label of dementia and dis- close how this discourse imposes a suffering of personhood that has yet to be deterred. An alternative discourse of possibility and knowing other-wise (Olthuis, 1997, 2000a, Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 2 2000b) is presented as a viable option to shift societal and professional assumptions and prejudices. We concur with several other authors (see for e.g., Dupuis, Wiersma, & Loiselle, 2012b; Herskovits, 1995; Mintz, 1992; Sa- bat, Johnson, Swarbrick, & Keady, 2011) that the dominant discourse of dementia, coupled with the medicalization of aging, reproduces dementia and human suffering through a totalizing disregard for another’s embodied personhood and the relationships that sustain one’s sense of self-with-other. Critical scholars, such as Behuniak (2011) who tackled the social construction of per- sons with dementia as the walking dead or zombies, Kontos (2004) who challenges the cognitive foundation of personhood, and Dupuis et al. (2011, 2012a, 2012c) consist- ently dialogues with, and learns from, per- sons diagnosed with dementia and their fam- ilies, and remind us of the power of words and how words shape actions in society. Language matters and, when used in certain ways, can be dangerous and harmful. Lan- guage shapes the way we see and frame the world. “What is named [is] noticed; what is not named is unlikely to be seen” (Davis, Sumara, & Luce-Kapler, 2008, p. 15). Thus, language has a profound impact on how we come to understand things, shaping our as- sumptions and perceptions. These assump- tions influence how we act in different situa- tions and how we are with others (Davis et al., 2008; Mintz, 1992). The language sur- rounding dementia has serious implications for how we see and engage with persons di- agnosed with some form of dementia, espe- cially Azheimer’s Disease (Dupuis et al., 2011, 2012b; Jonas-Simpson et al., 2012; Mitchell et al., 2011; Mitchell, Dupuis, & Jonas-Simpson, 2011; Naue & Kroll, 2008; Sabat et al., 2011). One of the most serious issues relates to how personhood of those diagnosed with dementia is represented. In this paper, we bring forth images and representations from the health and lay liter- ature about what it is like to live with de- mentia. We review what some outsiders think it is like to live with dementia and consider the dominant discourse that sur- rounds the dementia diagnosis. Serious at- tempts to counter the dominant discourse are considered as are the experiences of stigma from persons living with dementia. Our per- sonal insights and understandings as in- formed by experience and complexity sci- ence are considered before introducing the idea of knowing other-wise and the call for new discourses based in hope and possibility. Dementia and Personhood What are the images of personhood for those diagnosed with dementia? Popular literature and social media portray frightening images of AD. In 2004, a published book titled, Death in Slow Motion: A Memoir of a Daughter, Her Mother, and the Beast Called Alzheimer's (Cooney) captures the gruesome portrayal of a medical diagnosis. The Cana- dian newspaper, the Globe and Mail, ran a story called Doomed from Birth to Death (A. Mcilroy, May 7, 2007) about a woman born with Down’s Syndrome, who later devel- oped AD. Other titles, such as The Living Dead: Alzheimer’s in America (Lushin, 1990) and That Cranky Old Cat May Have Alzheimer’s (Fujita, 2012) layer on the fear- ful and negative messages about dementia. These images, coupled as they usually are with the tragedy discourse of being doomed, gutted, ravaged, taken over by a beast, and turned into the living dead, perpetuate a deep and pernicious fear of, and disregard for, persons with dementia. Legal and medical scholars have con- tributed to questioning the personhood of those diagnosed with dementia. Ponder the Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 3 views of medical philosopher Brock (1988) from his consideration of justice and demen- tia. I believe that the severely demented, while of course remaining members of the human species, approach more close- ly the conditions of animals than normal adult humans in their psychological ca- pacities. In some respects the severely demented are even worse off than ani- mals such as dogs and horses who have a capacity for integrated and goal directed behavior that the severely demented sub- stantially lack. The dementia that de- stroys memory…destroys a sense of per- sonal identity across time and hence they lack personhood. (p. 87) Twenty years later, an ethicist and advisor to the British government suggested that per- sons with dementia may have a moral duty to die, especially if they are wasting human and fiscal resources (Malpas, 2009). Debates continue over issues of personhood, human rights, and the meaning and awareness of self. The assumed loss of self with cognitive impairment can be traced to the 17thcentury rise of the “modern self” where the self and brain became consubstantial, or identical in substance (Kontos, 2004; Kontos & Naglie, 2009). This ideology laid the foundation for the modern view of person as autonomous, rational, and cognitively determined. The equality of brain and self(hood) underpins the predominant biomedical approach of at- tributing personhood to a body part, the brain, and human actions to be disease- based behaviours (Dupuis et al., 2012b). We deeply appreciate the valued work of health professionals, but the practice of dividing humans and reducing human expressions and experiences to bodily functions and be- haviours spread through multiple health care disciplines in their languages, activities, and practice protocols. This spreading, a kind of colonization, also seeps into policies and government regulations in the languages and prescriptive codes used to assess quality and compliance. Finally, the seepage penetrates societal and marketing realms in its relent- less domination, one that objectifies and problematizes lived experiences such as ag- ing (Estes & Binney, 1989; Kaufman, Shim, & Russ, 2004) and grieving, to name just two. Kemmis and McTaggart (1988) described the interdependent relationships between language/discourse, activities/practice, and social relationships/organisation in the pro- cess of institutionalization. The language we use, over time, gradually becomes institu- tionalized into accepted patterns of dis- course, which shape our activities and prac- tices (i.e., how we act) and our social rela- tionships and organization (e.g., how we re- late). These interdependent processes are reflected in Figure 1. The intermingling and interpenetration of values, words, and ac- tions are undeniable. As Olthuis (1997) not- ed, “Knowledges cannot be and never were neutral, dispassionate, disinterested” (p. 2). There is an overabundance of compel- ling examples about how medical coloniza- tion and its discourse has infiltrated human Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 4 life and impacted human lives, especially for persons living with dementia (Dupuis et al., 2012b; Herskovits, 1995; Sabat & Harré, 1994; Sabat et al., 2011). Health profession- als contribute to human health and well- being in many ways, but the consequences of biomedical colonization perpetuate de- humanized healthcare for persons with de- mentia - evidenced by such practices as in- fantilization, intimidation, stigmatization, and objectification (Herskovits, 1995; Kit- wood, 1997; Mitchell, Dupuis, & Jonas- Simpson, 2011; Sabat et al., 2011). Policy documents and public health forecasters fuel this fear by conjuring up images of the epi- demic taking over, the tsunami heading our way, the rising tide of dementia. In market- ing with techniques that highlight the most debilitating, demeaning, and despairing fears of Alzheimer’s disease and related demen- tias – the tragedy of it is emphasized and fear is commanded before compassion or even empathy. Healthcare journals and texts represent persons diagnosed with dementia as dements, victims, diseased, disoriented, departing, devoid, irrational, disruptive, and uncon- trolled. Consider these titles: “Dementia and the Phenomenon of Social Death” (Sweeting & Gilhooly, 1997) and “Beyond appearanc- es: Caring in the land of the living dead” (Dunkle, 1995). Even authors advocating for revolutionary change in dementia care prac- tices and policies, do not step away from the medical discourse. Consider the following description from authors advocating for so- cial justice in dementia care (Dilworth- Anderson, Pierre, & Hilliard, 2012). Alzheimer’s disease is a progressive brain disease that destroys brain cells, causing problems with memory, thinking, and behavior, which affects the ability to work, socialize, and care for oneself. As the disease progresses, Alzheimer’s pa- tients increasingly need assistance with basic activities of daily living (ADLs), such as eating and dressing as well as functions that enable them to live inde- pendently, including shopping and man- aging money (i.e., instrumental activities of daily living [IADLs]). In the final stages of the disease, patients require 24- hour care. (p. 28) Although these authors make an impas- sioned case for social justice in care and ser- vice for persons with dementia, and even though they address stigma and stereotype as forms of social injustice, they do not cri- tique the medical discourse that strongly contributes to the stigma and stereotype of dementia. Once diagnosed with dementia, persons and their feelings, actions, and expressions become symptoms within a problematized field of possibility. If persons with dementia express feeling healthy and well, they are judged as being in denial. If they are having trouble remembering details but fill in the gaps to save face, they are said to be con- fabulating. If they get angry with the way in which health workers are providing care, then they are labeled as aggressive and may end up being restrained and isolated. Other scholars have also noted this totalizing pro- cess of labeling and problematizing that en- gulfs a person’s entire life and relationships with others (see for example, Dupuis et al., 2011, 2012b, Herskovits, 1995; Jonas- Simpson et al., 2012; Sabat et al., 2011; Whitehouse, 2008). Fazio and his colleagues (1999) describe the process of dehumaniza- tion in dementia that starts with predominant discourses and labeling and ends with the complete objectification that regards persons as no more than stages of disease and deficit. This dehumanizing process creates suffering by devaluing persons and rupturing relations with the social world; it is a process that Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 5 damages one’s sense of self, leading ulti- mately to the loss of selfhood that is so widely thought to be caused by neuropathol- ogy. Alarmingly, the medical colonization has seeped into the social and personal fab- rics of contemporary society. The messages are clear and the impact profound. If we all live long enough, the odds are that we too will be diagnosed with dementia. There are strong advocates for diagnosing pre- dementia so that drugs can be started early but this raises ethical concerns and complex- ities (see Leuzy & Gauthier, 2012). Would we not all have pre-dementia? Medications too can be a form of violence—to both the physical body and one’s selfhood and rela- tionships. Moynihan and Cassels (2008) claim that the drug companies are selling sickness and making a fortune doing it. And, their predominant marketing tool is fear— fear that we too will get dementia, or de- pression, or some other dysfunction and be- come like them (Herskovits, 1995). But are we not already like them? “Do we not all have memory loss?” (Basting, 2009). Bast- ing helps us see that forgetting is an aspect of being human. We all forget but it is only pathologized with a diagnosis of dementia. If we are the ones contributing to the social construction of Alzheimer’s Disease, is this not irrational and degrading to humanity? In our experiences, many family care partners also express the othering discourse about their parents or partners. Families have expressed to us that they do not believe there is anything left of their loved one - no feelings, no relationship, just a desire to get them in a home (see for example, Dupuis et al., 2011). This is consistent with a study of more than 100 caregivers for family mem- bers in Australia. Authors reported that less than 50 percent of participants believed life with dementia was worth living and many considered the person socially dead and thought about or wished for the person’s physical death (Sweeting & Gilhooly, 1997). And the medical colonization of old age and dementia is seen in the everydayness of life for many older persons residing in long term care homes, in our protocols and standards, our assessments, and policies. Wiersma and Dupuis, as an example, described five so- cialization processes of mechanical and reg- ulatory procedures -- placing the body, de- fining the body, focusing on the body, man- aging the body, and relating to the body – used in long-term care homes to create “in- stitutionalized bodies” or what Foucault (1977) termed “docile bodies”. Colonization is also seen in these settings in the overuse of medication, the use of geri-chairs, side rails and other physical restraints, in the vio- lence of policies and surveillance that leave many direct care providers with moral resi- due (Webster & Baylis, 2000), fear, and guilt of knowing that health care should look a lot different than what is being delivered in Canada (Kontos, Miller, Mitchell, & Cott, 2011; McGilton, Sidani, Boscart, Guruge, & Brown, 2012). Long-term care policies do not help. As an example, the Ontario Long Term care Act (2007, 2011) is a lengthy document with hundreds of rules and expectations. Many relate to the facility, food preparation, plans of care, assessments, and so on. Neither the importance of personhood nor the idea of quality relationships are addressed in the Act, except for definitions of abuse that attempt to protect residents. However, even then, and we quote: “physical abuse does not in- clude the use of force that is appropriate to the provision of care or assisting a resident with activities of daily living, unless the force used is excessive in the circumstances” (p. 1). It is extremely troubling to realize that the imposed suffering for persons with dementia in our health care system that is Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 6 unnecessary, unethical, and cruel is not ad- dressed. The Act focuses on task completion, regulation, compliance, assessment, loga- rithms, evidence, and enforcement. This re- ality coupled with narrative accounts from those who provide direct care (see for ex- ample, DeForge, van Wyk, Hall, & Salmoni, 2011; Kontos, et al., 2011) paint a dark, and indeed alarming picture of how far we are from providing compassionate and loving care based in quality relationships. And oth- er authors have raised similar concerns about the absence of relationships in our ev- idence-based world of healthcare (Mitchell, in press; Slife & Wiggins, 2009). It is our contention that we must shift this violent approach to the care of persons, and espe- cially those with dementia. We must rebel against the suffering we are inflicting on others and the suffering it creates in our own lives (Malpas, 2012). Other countries, such as Denmark, have a totally different ap- proach to dementia care that is far more hu- manistic and relational. A recent CBC pro- duction with leaders in dementia care in a Denmark facility reported that instances of problem outbursts were very rare and when they occurred, were considered a failure of relationship, not a disease process (Wells, 2012). We would be remiss to not address the complex realities and losses that do accom- pany the diagnoses of dementia for individ- ual persons and those closest to them. There are deep losses of familiar patterns, routines, ways of relating, and shared remembrances. Families often describe feeling trapped and fearful of the realities they see unfolding - realities that can increase isolation, loss of friendships, stress, and moments of sheer frustration. But, there is also the reality that the person with dementia is still an embod- ied being who expresses selfhood and de- sires, suffering and joy. Our concern is that the losses experienced are far more profound when experienced within a totalizing culture that stigmatizes aging and dementia through the tragedy discourse and leads to dehuman- izing practices such as objectification, ex- clusion, silencing and so forth. What would it mean to persons and families experiencing these realities and losses if their communi- ties embraced difference and supported per- sonhood and inclusion? For those of us who are involved in the care of persons with de- mentia, we have opportunities and obliga- tions to try to make things more humane and compassionate, to work towards the creation of communities in which “all kinds of meth- ods create all kinds of situations in which each of us finds relationships where our gifts are recognized and magnified” (McKnight, 2005, p. 117). Countering the Dominant View: Calls for Dignity and Relationality Some scholars have endeavoured “to restore dignity and resuscitate the humanity of indi- viduals diagnosed with Alzheimer’s” (Her- skovits, 1995, p. 154) by focusing on the subjective experience of dementia, the na- ture of personhood and the self, and the so- cio-cultural context of disease definition, rather than on neuro-psychological deficits (see for example, Dupuis et al., 2011, 2012a, 2012c; Jonas-Simpson & Mitchell, 2005; Kitwood, 1995, 1997; Kontos, 2005, 2012; Naue & Kroll, 2008; Sabat et al., 2011; Sa- bat & Harré, 1994). The importance of Tom Kitwood’s (1995, 1997) work cannot be overestimated in terms of the pioneering work he did in the area of personhood and dementia. Kitwood began with the assump- tion that the loss of self commonly associat- ed with dementia was due more to a failure of understanding and care than to a structur- al failure of the brain. Focusing on the social environment of care, Kitwood described a host of ways in which persons with demen- Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 7 tia are depersonalized, invalidated, and treated as dysfunctional. Our individual and collective efforts have focused on a re-visioning of the self in Alzheimer’s disease and we strongly chal- lenge the assumption that the loss of self is a direct consequence of a degenerative pro- cess in nervous tissue. Like others (see for example, Herskovits, 1995; Kitwood, 1995, 1997; Sabat et al., 2011), we purport that the debasement of personhood is more likely affiliated with the ways persons relate with those diagnosed with dementia. There is lit- tle agreement on what the diagnosis of de- mentia means beyond the neuropathology and there is remarkable diversity in how neuropathology is manifested in individual lives and patterns of living (Herskovits, 1995; Whitehouse, 2012). Further, neurolo- gists now indicate that even persons who have the brain pathology, may not develop the symptoms of dementia (Black, 2013). In our re-visioning efforts, we have argued for an expansion of the discourse on selfhood in dementia to include embodied self- expression (Kontos, 2004, 2005, 2006, 2012; Kontos & Naglie, 2007a, 2007b, 2009), authentic partnerships, (Dupuis et al., 2012a), and a focus on the human being and his or her lived experiences and quality of life (Jonas-Simpson & Mitchell, 2005; Mitchell, Dupuis, & Jonas-Simpson, 2011). Based on empirical research with per- sons with moderate-severe cognitive im- pairment, Kontos (2004, 2005, 2006, 2012) and Kontos and Naglie (2007a, 2007b, 2009) illustrate how the engagement of self- hood with the world consists primarily in their essential corporeality of being-in-the- world. The expressiveness of persons with dementia discloses a cultural particularity that is shaped by socialization, but the ex- pressiveness is always embedded in situa- tional unities that call forth bodily move- ment and gestures. These situational and embodied expressions of self persist despite even severe cognitive impairment. In other words, many life patterns and ways of relat- ing continue to be expressed in the presence of dementia because fundamental aspects of selfhood are embodied and not defined by cognitive function. Kontos illustrated how persons with se- vere dementia continue to express them- selves in significant ways through their bod- ies as demonstrated in social etiquette, affec- tion, friendship overtures, concern for ap- pearance, engagement in religious and artis- tic practices, expression of physical needs and discomforts, aversion to particular foods, and dispositions that convey one’s prior vo- cation (Kontos, 2004, 2005, 2006, 2012; Kontos, Miller, & Mitchell, 2010; Kontos & Naglie, 2007a, 2007b, 2009). The im- portance of the body for these expressions is powerfully illustrated in the following ex- ample: a male resident with severe cognitive impairment living on an Alzheimer support unit who had lost the ability to talk and feed himself would hit other residents on the head before taking his seat at the table (Kon- tos & Naglie, 2007). Once a connection was made between the fact that he would always remove his hat before entering the dining room, and that the residents at his table whom he would hit were wearing a hat, it became clear that his ‘aggressive behaviour’ was related to his prior longstanding respect for the etiquette of removing one’s hat be- fore dining. Despite severe cognitive im- pairment, he still retained the ability to ex- press himself through nonverbal behaviour. Another example highlights the intersec- tions between social class and gender, show- ing the ways in which embodied selfhood in dementia continues to express class habitus through habitual manners and gestures, in- cluding ones in relation to dress. Consider Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 8 the following observation from an Alz- heimer support unit in a long-term care fa- cility. String of Pearls Molly’s wheelchair looked enormous next to her thin and shriveled body. Her legs had severely atrophied leaving a seemingly two-dimensional form. Were she able to stand, she’d be no more than five feet tall. Her face was heavily wrin- kled but her skin soft, resembling a peach. Her hair was uniformly white which accentuated her China-blue eyes. The back of her hands was the most viv- id testament to the near century she had lived. The skin was thin revealing a net- work of bones and purple veins. Her hands shook as if powered by an invisi- ble gentle motor. Despite her withered appearance there was an indescribable elegance to her. I noticed this in watching Molly as she was brought to the dining room. Once her wheelchair was positioned at the ta- ble a bib was fastened around her neck. Molly then carefully unfolded her nap- kin and placed it on her lap. Even though the use of the bib made the need for a napkin redundant, she nonetheless in- sisted in observing this table etiquette. As a Health Care Aide was feeding her, cereal dribbled from Molly’s mouth and coursed down her chin. When the Health Care Aide tried to give her another spoonful Molly wrinkled her forehead and gently pushed the woman’s hand away. Molly then lifted her bib to her mouth to wipe the cereal. It was only af- ter her chin was clean that she accepted another spoonful. One might expect in- difference from a woman who has lost the ability to feed herself and yet Mol- ly’s insistence to adhere to a sense of so- cial grace and her attention to neatness, suggested a strong and continuing pres- ence. She closed her eyes slowly and opened them again releasing a deep sigh. She then looked around the table as if for the first time noticing that there were others seated with her. She patiently waited to make eye contact with each of them to acknowledge their presence. Then reach- ing her wavering hand to the back of her neck, she struggled to pull something from underneath her bib. Extending her arm appeared to cause her pain and dis- comfort and yet she persisted. Molly eventually revealed a string of pearls she was wearing that had been covered by her bib. She allowed the pearls to pass through her long slender perfectly mani- cured fingers placing them ever so deli- cately atop her bib. With this simple ges- ture, Molly emerged from her world of decrepitude, incontinence, dementia and helplessness. (Kontos, 2006, pp. 197- 198) Relating with persons with dementia re- quires recognition and support of the exis- tential expressiveness of the body in its rela- tion to the world, and our unique and shared socio-cultural ways of being-in-the-world (Kontos, 2004). It is our experience, in bear- ing witness to persons with dementia, that a significant amount of suffering is linked with the way the tragic and the horror-filled words and images, that are common place in social and medical literature, get imposed on individuals living with dementia. We reflect our fears on persons and that fear disrupts relationships and opportunities for learning and knowing other-wise. In our work with families living with dementia (Dupuis et al., 2012a), one person with dementia described her experience in the following way: Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 9 The person that has the disease are sometimes treated like they’re not here anymore….I think that’s very bad be- cause we definitely are still here. And we might not have all our capabilities up there as we used to have…., We might not have great days all the time but sometimes we do, and I think that should be encouraged and try and make people more aware of what goes on with people with Alzheimer’s instead of just saying - - oh they’ve got Alzheimer’s, so I guess they’re not with the program anymore…., A lot of people I know will just walk by me or go the other direction if they see me now because they think I’m not the same person, which I’m not but I’m still here and I can still talk you know. (pp. 428-429). Another stated: “Many think it is the disease that causes us to withdraw, and to some ex- tent I believe this is true. But, for many of us, we withdraw because we are not provided with meaningful opportunities that allow us to continue to experience joy, purpose, and engagement in life” (Dupuis et al., 2012c, p. 240). Persons living with dementia tell us about this suffering in their pleas for inclu- sion, respect, and love: I want others to know and treat us as if we are whole people. We are not half full or half empty. We will never, ever be a shell of ourselves. Later in the dis- ease you may knock on my door and I may not answer, but that doesn't mean I'm not home. I am still Richard. I am still wholly and fully a human being. I have a right to privacy, dignity, respect, and I am still able I believe perhaps in ways that you cannot appreciate because you don't have dementia. I am still able to appreciate myself, to love, and need to feel love, I am in short no different than you except I have dementia probably of the Alzheimer's type. My world is full and complete, it fills my mind, it fills my days, and it's only the professionals and caregivers who remind me of parts of my old world that I cannot access, or I'm confused about. (Taylor, 2009, p. 47) Malpas (2012) provokes us to think more deeply about suffering and to consider that suffering is “a form of distress that is directly related to one’s sense of personhood” (p.11). Our sense of wholeness and of hope is linked with how we and others view and judge our personhood. Further, he reminds us that we are all interwoven tapestries that have formed over time and that continue to form through the relationships in now mo- ments. Our embodied selfhood is an expres- sion of our relationality with others, with our memories, our hopes, and in the places we find ourselves. Malpas says that places are not “containers but openings of actions and movement” (2012, p. 12) - places are where compassion dwells - where relation- ships dwell. Deeper Understandings of Living with Dementia We have many years of work, practice and research, with persons who live with demen- tia and their families. Over this time, we have learned some things that are not com- monly known or acknowledged. First, we have seen that dementia is a very dynamic and fluid phenomenon that is not, as por- trayed in the medical and societal discourses, a progressive, irreversible decline of one’s humanity. In our experience, persons with dementia frequently fluctuate - moment to moment, day to day, and week to week-- among multiple realities interspersed with moments, sometimes shocking moments of Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 10 clarity in the present now. Even in the latest stages of dementia, persons have moments or times of clarity that cannot be explained by medical science. Secondly, while our work has taught us that persons living with dementia do suffer with all the losses and restrictions that typi- cally accompany the diagnosis of dementia, there are also continuing relationships and love, persisting patterns of one’s values and activities, and moments of humor, joy, and peace. Further, there is also new learning and emergent possibilities that happen when living with dementia. The dominant dis- course has done a thorough job of portraying the loss and decline, the bitter and the tragic. And, they have relatively ignored the conti- nuity, love, and growth that also exists in life with a diagnosis of dementia. Some people and groups have advantage with the dominant discourse - as noted previously, political and financial benefits can accom- pany the tragic portrayals. The third thing we have learned is that people with dementia often live in a world without the boundaries of time, place, and sometimes person. The boundaries that we construct and rely on to separate things like time, place, and person shift with dementia, the boundaries and barriers become more fluid, and less defined such that the person before you, is all at once, in the instant of the now moment; the person before you is a unity of everyone they have been over a life span. Past, present and future are experi- enced together. A woman recalled from one of our practices showed this great expanse of being as she spoke about being a child waiting to sit in her dad’s dentist chair, a mother with growing children, an aging and loving widow, and an old women waiting to be called home. She moved effortlessly in her speech from one scene to the next with no boundaries or limitations of who she was. She was all she had been and all she was becoming there in one instant of being and expanding. This phenomenon of disappearing bor- ders and boundaries may actually herald a different and more transformative process of human aging. There is at least one theory, gerotranscendence (Tornstam, 1996, 2005; Tornstam & Tornqvist, 2000), that suggests some qualities of aging as described by old- er people in Sweden, sound something like the disappearing boundaries with dementia. Older persons in Sweden also describe a greater connection with the cosmos; con- necting and reconnecting with loved ones and memories; and redefinitions of time, space, life, and death. The point we are try- ing to make is that the process of aging and death is not yet understood; beyond physical changes aging is still a mystery. There is the possibility that the disappearing boundaries of time, place, person currently designated as symptoms of brain disease and dementia, may in fact be markers of a natural trans- formation that occurs with aging. Another theoretical frame offers important insights about the complexity and relationality of human being and the universe. Complexity Science and Relationality Complexity science with its core idea of re- lationality is changing how we think about and relate with persons with dementia. We offer a sketch of how complexity science is helping us to understand dementia and then we turn to several philosophers who have advanced the relational nature of selfhood and the opportunities that many health pro- viders are not yet realizing. We will then explore more fully the notion of the rela- tional self and dementia. Complexity science is a conceptual frame that is informing research and practice Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 11 in multiple disciplines, including education, healthcare, physics, and biology (Uhl-Bien, Marian, & Mckelvey, 2007; Westley, Zim- merman, & Patton, 2006). There are many sources of complexity thinking that expand understanding of relationality, and possibil- ity in healthcare and education in particular (see for example, Davis & Sumara, 2012; Davis, Sumara, & Luce-Kapler, 2008; Doll, 2012; Doll, Fleener, Truit, & St. Julien, 2008; Mason, 2008; Ricca, 2012). “The cen- tral ideas of complexity science are that hu- man beings and the universe we inhabit are living systems, complex adaptive systems where mutual process, non-linear change, networked connections, and transformations continually bring forth new realities and new possibilities” (Mitchell, Jonas-Simpson, & Cross, 2012). Concepts informed by com- plexity include: emergent growth, mutuality, relationality, non-linearity, and unpredicta- bility (Ricca, 2012). Complexity science helps us see that there are multiple nested realities emergent over time that co-exist and co-influence through relationships. In Figure 2 we offer an image of how nested realities might be conceptualized for persons living with dementia. As portrayed in this Figure, a person experi- ences dementia within a particular family, community, culture, and history. People have relationships with particular memories and dreams, with favourite foods and people, with preferred routines, habits, and life pat- terns, with familiar and often comforting music and images. The opportunities to en- gage with persons with dementia have yet to be fully articulated and mobilized into prac- tice arenas. Indeed, instead of attending to ways of relating with persons with dementia, in order to preserve and extend their rela- tional selves, regulatory bodies and clinical assessments and protocols are compressing all forms of relating and reducing life in long term care homes to tasks and duties, “bed and body work” (Gubrium, 1975), cre- ating “institutional bodies” (Wiersma & Dupuis, 2010). Indeed, recent literature sug- gests that some direct care providers who care for persons with dementia in long term care are either afraid to care for residents, fearful of doing what people want them to do (DeForge et al., 2011) or workers break the rules to do what residents want and live with the fear of being caught and punished (Kontos et al., 2010). Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 12 Figure 2. Dementia & Other-Wise: An Emergent Opportunity for Wisdom and Ethical Relating Dementia and the Relational Self We believe that the consequences of the rampant medicalization of later life is a form of violence. The violence is expressed and lived out through image, language, and ac- tion in all aspects of our contemporary world. We refer again to Figure 2 as a way to think about and see this cone of violence that dominates dementia care in the West, and to also show that there are other alterna- tives to consider and create. We can attend to relationships in all their complexity and mystery with persons who live with demen- tia. The question before us is how to move the predominant cone of violence portrayed in the diagram toward the opposing realm of compassion and knowing other-wise? Olthuis (1997) proposed that being oth- er-wise is a commitment to being-with and ethics is the responsibility we bear to love another. The question of whether one needs to love to practice knowing other-wise is perhaps debatable. At the very least a core of deep compassion for other human beings is foundational. Knowing other-wise is an opportunity to see difference as potential wisdom instead of something to be changed or fixed. If we truly believed that difference is a space of potential growth, an opportuni- ty for engagement and expansion of our own understanding, then how might we approach others? For Olthuis (1997), we would ap- proach with a humble curiosity, an open and non-judgmental invitation for the other to reveal who they are in the moment of their own unfolding. One can imagine that such an approach with persons diagnosed with dementia would stand in sharp contrast with contemporary practice protocols and policies. Post (2000) conquers: “Rather than allowing declining mental capacities to divide human- ity into those who are worthy or unworthy of full moral attention, it is better to develop an ethics based on the essential unity of human Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 13 beings and on an assertion of equality de- spite unlikeness of mind” (p. 5). We wish to build on the ideas of know- ing other-wise proposed by Olthuis (1997, 2000a, 2000b) and Hart (1997), by suggest- ing that embodied selfhood provides a foun- dation for an ethics of mutuality. Embodied selfhood extends Olthuis’ sensory knowing through the articulation of a synthesis of bodily and social being. We are embodied, complex beings who co-evolve with others in the universe. Bringing persons with de- mentia into this space of embodied co- evolution deepens and enriches the moral imagination and thereby enables possibility for relationality and compassionate care. Although not yet acknowledged as fully par- ticipating partners in Olthuis’ (1997, 200b) symmetry of mutuality, if difference is the space of emergent wisdom, then persons with dementia create even more potential space and opportunity for developing wis- dom and for knowing other-wise. A com- mitment to knowing other-wise, of embrac- ing dementia as a place of difference and space for learning can provide one pathway toward a more compassionate, wise, and eth- ical world. The places we live and the relationships that form there either contribute to and re- spect our personhood, or they deny our per- sonhood and inflict suffering of the deepest kind. And one further point, for staff who work in long term care and who witness the suffering imposed by a culture of care that objectifies and denies the selfhood of others, staff too become depersonalized and dis- tanced in their work. Work that should be about nurturing embodied selfhood and rela- tionships, becomes work about bodies and tasks (Gubrium, 1975; Wiersma & Dupuis, 2010). Calls for Re-Thinking Complexity and Other-Wise There are gifted scholars and geriatric spe- cialists who are now questioning the bound- aries between normal aging and this process that medicine has labeled a disease. Peter Whitehouse (2008) is one such scholar and he has published a controversial book called the Myth of Alzheimer’s Disease. Some cul- tures view dementia as a natural part of the life journey (Ikels, 1998). The call for action is certainly to ease the pain and unnecessary suffering for persons diagnosed with demen- tia, or any mental illness for that matter. As a society we need to be more open, more compassionate, more curious about the dif- ferences that surround us when persons age or experience different realities. Instead of violating others, we could be learning, and growing, and loving others in far more ethi- cal and compassionate ways. Transformation of how we care for those living with dementia is needed and must begin with interrogating and changing the language and discourse surrounding demen- tia. Because of the harm and suffering evoked by the current powerful fatalistic and destructive discourses, Fazio and his col- leagues (1999) emphasised the need for pos- itive alternatives to describe the experience of dementia. They emphasized: “As words change, so do perceptions, and as percep- tions change, so do actions” (p. 5). Alterna- tive discourses challenge what is known and provide new possibilities for being and relat- ing. As Kemmis and McTaggart (1988) not- ed “To change the culture of our groups (let alone whole institutions or society more broadly), we must change ourselves, with others, through changing the substance, forms and patterns of language, activities and social relationships which characterize groups and interactions among their mem- bers” (p. 17). Mitchell et al. Journal of Applied Hermeneutics 2013 Article 5 14 Cathie Borrie (2010a, 2010b), an advo- cate for both people with Alzheimer’s and their care partners, herself cared for her mother with Alzheimer’s disease for many years and wrote about how she came to re- frame dementia for herself (see Borrie, 2010a). She became intrigued with her con- versations with her mother and began to tape record their interactions. Although in the beginning she saw her mother’s speech as garbled talk, nonsense, she began to see the poetry in her mother’s words. In reframing how she saw her mother’s words, she learned to be truly present with her mother rather than correcting and judg- ing. In thinking differently about her interac- tions with her mother she learned to listen attentively rather than dismiss. She learned that all actions are imbued with meaning and are a means of communicating. Her moth- er’s words became an unexpected gift and Cathie has recently published her mother’s words so that others can see the poetic and celebrate the eccentric realities of dementia (see Borrie, 2010b). I felt free, free and undivided, free as a bird! That I done, free and undivided, I feel refreshed. Free to flap my arms like a bird. Go where I want to go. Do what I want to do. We close with an appeal for a more criti- cal stance toward our practices and dis- courses. The predominant discourse sur- rounding dementia is entrenching those di- agnosed in a cone of violence and fear. We need a more critical examination of our pol- icies and standards and to rebel against those that diminish personhood for others and our- selves. We all need to promote a more curi- ous and open frame of thinking about aging and life with dementia. Recent develop- ments in understanding complexity concepts, relationality, and embodied selfhood can inform different ways of thinking, feeling, and acting with persons with dementia. Fi- nally, we need to create language that in- spires and enables respect, love, creativity, and compassionate relating. We need to fill in the spaces of knowing other-wise with what we come to know when embracing dif- ference with persons with dementia. Biographies Gail J. Mitchell, RN, PhD. Professor, School of Nursing; Director/Chair YORK-UHN Nursing Academy. York University. Sherry L. Dupuis, PhD. 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