1 THE MEMORY BRIDGE TRAINING RETREATS: AN ETHNOGRAPHIC EVALUATION Lucinda Carspecken Lecturer, Inquiry Methodology Indiana University, Bloomington Copyright © June, 2018, L. Carspecken Based on interviews with… Gina Awad Marigrace Becker Christiane Bomhard Debbie Carriveau Angela Christie Heather Comstock Carolyn Cook Emily Cousins Jill Crunkleton Greg Farrell Brenda Gurung Mary Jo Gibbons Jane Harlan-Simmons Ryan Harrison Emma Jack Maeve Larkin Jeanene Lindsey Pat McDaniels Sarah Neary Donna Newman-Bluestein Molly O’Brien Julia Periello Maegan (Maggie) Pollard Magdalena Schamberger Natalie Sell Susan Shifrin Stuart Torrance Michael Verde Cheryl Yeend 2 ACKNOWLEDGMENTS Thanks to my skilled and patient transcribers, Kathleen Carspecken, Sunil Carspecken and Michelle Collard. And thanks to Indiana University’s Faculty Writing Group for providing a weekly space and time to work on this report. 3 TABLE OF CONTENTS INTRODUCTION: THE MEMORY BRIDGE TRAINING RETREATS FOR 2015 AND 2016 5 Memory Bridge in Context: Dementia Care in the United States 6 Research Methods 10 An Overview of the Report 16 CHAPTER 1. MEMORY BRIDGE’S BEGINNINGS, ITS VISION AND SOME ASPECTS OF ITS PHILOSOPHY 18 CHAPTER 2. “INGREDIENTS IN A CASSEROLE”: THE PEOPLE WHO CAME AND WHAT THEY BROUGHT WITH THEM 27 The Selection Criteria 27 The Application Process 30 The Participants 33 Learning from One Another 35 What the Participants Brought with Them 38 CHAPTER 3: THE ELEMENTS OF THE CURRICULUM 63 The Material Aspects of “Feeding the Feeders” 63 Circles 68 Meditation 76 The Buddy Visits 79 Formal Presentations 100 Stories 108 Down Time 113 Group Activities Initiated by Trainees 118 Eye Contact 122 4 CHAPTER 4. WHAT PEOPLE TOOK AWAY 125 How the Activities Reinforced One Another 126 Community: Relationships and Interactions Among the Participants 128 Listening 132 “I didn’t feel like the crazy person on the sidewalk”: Validation 137 The Personal and Professional Challenges of Dementia Support 144 Plans and Projects 154 Considerations for the Future: Adaptations or Changes Suggested by the Trainees 159 Overviews and Summaries 161 CHAPTER 5. “PERFECT TEACHERS”: SOME BROADER IMPLICATIONS OF THE MEMORY BRIDGE RETREATS 164 Broader Implications for Care 165 Broader Implications for Pedagogy 167 Broader Implications for Perceptions of Dementia 170 Conclusion: Upside-Down Normativity at the Memory Bridge Retreats 171 BIBLIOGRAPHY 174 5 INTRODUCTION: THE MEMORY BRIDGE TRAINING RETREATS FOR 2015 AND 2016 That is what struck me; that Michael was talking about what Alzheimer’s was teaching us. We don’t have to figure out what to do with them. It is forcing us to figure out where we have come to and how we define humanity and what we are going to do with ourselves. It is really distilling down this notion of what it means to be human. Sarah 2015 For five consecutive summers in Southern Indiana, groups of a dozen or so people gathered for training retreats run by a non-profit organization called Memory Bridge. Most of those attending came from within the United States. Some came from as far away as Canada, Europe, even Australia. All were involved with dementia care in one form or another, and they wanted to deepen or reinforce their understanding and to improve their practice. In this report I will provide an ethnographic portrait of the trainings in 2015 and 2016, with a focus on the educational approach. I will be looking at how and whether the participants perceived it as making a difference in their work, and I will also be looking for Memory Bridge’s unique contributions to the field. I will conclude by discussing its broader applications for dementia-care pedagogy as a whole. Memory Bridge’s overall purpose is, according to its website, “to create a global community of people who, like us, are learning to listen to people with dementia for what 6 they have to teach us about our own humanity.” Education, community building and advocacy are some of the strategies it uses to meet this broader goal, and the summer sessions combined these. They each lasted for five days, and the participants stayed on site for that time. I have chosen to refer to them as “training retreats,” as this is the phrase used by the organization online. However, Michael Verde, who is the founder and facilitator, sees both words as inadequate. He elaborates; “I don’t think there’s any training involved. There’s got to be a better word. The “training retreat” is a kind of compromise. We are retreating but it’s not about us.” As I describe his vision for Memory Bridge I will also explain his ambivalence about these terms. But first I will look at dementia and dementia care within the United States, and offer some context for the organization’s work. Memory Bridge in Context: Dementia Care in the United States Dementia is a growing, much-publicized and much-measured phenomenon. In the United States there are 5.7 million with this diagnosis in 2018. Over sixteen million people work as informal, unpaid care partners for them. Of these, sixty nine percent have provided care for at least a year, and more than thirty nine percent have been providing care for four or more years.1 Family caregivers for the cognitively frail are themselves vulnerable to depression, anxiety and ill health.2 While it is hard to accurately quantify the emotional needs of people with dementia, recent research has found an inverse relationship between satisfying social 1 Alzheimer’s Association Factsheet, March 2017 Viewed July 20th 2017. 2 See, for example Schutz and O’Brien, 2015 and Cooper, Balamarall and Livingston, 2007 7 interactions and this label3 - that is, the more positive relationships a person has, the less likely it is that they will receive this diagnosis. This suggests the value of attention, interaction and listening as preventive measures. Recent research also points to respectful and trusting interpersonal relationships as an essential feature of effective dementia care.4 For Michael,5 as for other theorists and advocates, social interaction with this population is not only a means to stem the progress of Alzheimer’s but is a good in itself. Empathetic attention is valuable for elders and for other people diagnosed with cognitive disabilities not because it will prevent or cure a “disease” but because connection is an inherently desirable feature of life. “Everybody needs to matter” Michael says, “And everybody needs to belong.” Memory Bridge’s philosophy is distinct from a traditional medical approach to dementia, but it has much in common with another strand of memory care, which draws on the humanistic psychology of Carl Rogers6. The best known initiators of this approach are Naomi Feil and Tom Kitwood. Feil worked as a social worker in the 1960s and came to appreciate the value of empathy, listening and validating elders’ experiences, whether or not these conformed to “objective” reality. She originally published Validation: The Feil Method, in 1982 and later wrote The Validation Breakthrough.7 Feil has been an inspiration to Michael (among others) and has led workshops at Memory Bridge retreats. Kitwood – a psychologist and former priest from England - regarded the ill-being experienced by cognitively frail elders as a result of their being treated as “nonpersons.” 3 See, for example, Fratiglioni, Wang, Ericsson, & Winblad, 2000 4 See Fazio, Pace, Flinner & Kallmyer, 2018. See also Brooker, 2006 and 2004, Fazio 2008, and Kitwood, 1992 5 I will use first names for all participants and organizers throughout this evaluation, unless they express a preference for their last names or for pseudonyms. 6 Rogers, 1961 7 Feil, 2002 8 According to Kitwood personhood is ‘a standing or status that is bestowed upon one human being, by others, it implies recognition, respect and trust’.8 His work influenced dementia support around the world and is fundamental to what is usually called “person centered care.” Later authors added new elements or processes to person centered care – like the VIPS model,9 and the Senses Framework.10 The Alzheimer’s Association includes a person centered focus as “the core of quality care” in its 2018 website.11 This approach was also instrumental in the various institutions developed by the Culture Change movement, which attempted to create home-like environments as well as respectful relationships. It included the Eden Alternative, Wellspring, and the Greenhouse/Small House projects. Person centered care has moved into mainstream thinking about dementia support, and was even noted as a Quality Strategy by the Centers for Medicare and Medicaid Service in 2016. However there is a mismatch between theory and practice when it comes to aged care in the United States. In practice, people with dementia often report being ignored or infantilized.12 Koren noted that the kind of transformation advocated by the Culture Change movement was limited by funding shortfalls, regulations and lack of nursing buy- in.13 Molony et al find that, At present, many persons living with dementia do not receive person- centered assessment and care planning because of programmatic, organizational, and regulatory requirements and professional and provider 8 Kitwood, 1997 9 Brooker 2007 10 Nolan et al 2006 11 https://www.alz.org/dementia-care-practice-recommendations/ Website viewed April 2018. 12 Bryden, 2016, Ellenbogen, 2012, Specht, Taylor and Bosser, 2009. 13 Koren, 2010 9 practices that reflect the needs of staff and settings, more than the needs of the person with dementia. Another, (related), obstacle is the extremely high turnover among institutional care partners.14 Squires et al found high workloads, and lack of resources and autonomy to have the most deleterious effects on care workers’ job satisfaction.15 Low pay is also an issue. Time pressure makes it difficult to enact person-centered care, even where this is an institutional or personal goal.