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Interview
Interview with Dr Anne Davis Basting, 21 May 2013
Dementia 0(0) 1–7 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214562136 dem.sagepub.com
Kevin R Peters and Stephen Katz
Background Dr Anne Davis Basting is a professor in the Department of Theatre at the Peck School of the Arts at the University of Wisconsin-Milwaukee (UWM). She is a leader in dementia care and highly honoured and awarded for advocating an alternative dementia culture. Her unique interdisciplinary background intersects scholarly, literary, documentary and theatrical arts with innovative programmes in community care and creative living. Dr Basting’s recent book, Forget Memory: Creating Better Lives for People with Dementia (2009), along with numerous articles and essays, outlines a new and inclusive way to think about ageing and memory loss. Her inventive story-telling project, TimeSlips: A Creative Story Telling Project (see weblink below), has blossomed into an international network of people who listen, learn, record and dramatise the narratives, songs, pictures and dances of people with memory challenges, whose creativity is acknowledged against the perceptions of decline and loss. Similar to her previous programme called ‘The Penelope Project’ in 2011 (see weblink below), Dr Basting’s new work is on ‘The Islands of Milwaukee’ (see weblink below), a project in collaboration with the Sojourn Theatre in Milwaukee, that aims to bring communal engagement to older adults living alone, and to catalyse public conversations about investing in a more connected community. Dr Basting also founded and continues to facilitate the Creative Trust, an alliance to foster life-long learning through the arts. A collaboratively edited book on the Penelope Project is forthcoming from the University of Iowa Press. Question: Dr Basting, thank you for agreeing to talk to us today, can you begin by telling us about your career and background? AB: I completed a PhD in Theatre Studies at the University of Minnesota where I looked at the social performance of ageing in similar ways to how other theatrical or cinematic performance has been studied. But I was interested in performance that was not just memory-based, but rather was created through the immediacy of improvisation. When I began to transform the dissertation into my book, The Stages of Age: Performing Age in Contemporary American Culture (1989), I realised it was also a powerful transforming moment for me. All the representations of performance I was looking at were of active and cognitively healthy people and, therefore, there were very few representations of any kind of physical or cognitive disability. Yet, within the interviews I gathered for the research were other hidden stories where people would say such things as: ‘he or she couldn’t perform anymore but we rallied around them.’ So when people would begin to have cognitive
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challenges, or ‘trouble thinking’ as I’ve come to call it, they really disappeared from the stage. They could no longer self-represent and I found that very fascinating. New questions then emerged for me, such as, when does a person become unable to perform and express who they are? Is it the stage? The audience? The actor? These are still intriguing questions for me some 15 years later, during which time I have been developing theatre techniques for and with people with significant memory challenges, while also learning so much from them about what it’s like to live with such challenges. Then there is the practitioner side of me, where I created a programme of improvisational storytelling called TimeSlips: A Creative Story-Telling Project beginning in 1995, from which I collected a wonderful compendium of stories and developed a workshop culture for telling stories. I saw these stories in terms of artistic creations, about which I wanted to tell others through a series of performances; so the dramatist, the scholar and the practitioner sides of me developed a whole field of practice simultaneously. This combination of professional and artistic roles informed my book Forget Memory, because it addresses both the cultural stories that we tell about memory loss and what they mean and explores the alternative stories and truly therapeutic possibilities that lead us to understand memory loss in far more collective, complex and humanistic ways. Question: Your book The Stages of Age: Performing Age in Contemporary American Culture (1998) was unique in being very ethnographic and anthropological in scope. AB: I had studied with Jill Dolan when she was teaching at the University of Wisconsin in Madison. She looks at the material practices of performance and writes deeply about the performances she observes. She is both writer and audience. So, I was trained on how to appreciate observation as a cultural moment in which you are also participating in the performance. Question: In the meantime, you have created, edited, published, performed and been associated with so many great stories about and by people who have cognitive challenges. Can you tell us about one that really stands out for you that tells us something more about what it means to have a change in memory? AB: The performance of To Whom I May Concern, by Maureen Matthews, is one where people with memory loss have created a play that they perform themselves by reading letters on stage. At one of the performances of the play in front of an audience of about 300, one of the performers suddenly looked at the page and could not identify or find where he was or even what the page was. He then looked up at the audience and said, ‘You’ll have to excuse me. I have Alzheimer’s.’ So here was a poignant moment of performance and nonperformance, where the roles clearly overlapped. The reaction from the audience was applause and a standing ovation, for what would normally be judged as a failure of performance. Question: As you know for younger people, for example in rock and roll performances, they often forget their music, fall off the stage, or need unexpected breaks to recoup and continue with the show. Yet, we accept these kinds of failures in performance as being
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natural and expected for these younger people, but not for older people who can’t ‘perform’ in cognitively competent roles. AB: That’s true. But the interesting thing about studying the social performance of people with dementia is that successful performance of themselves demands an erasure of all performance of the disease symptoms. I discuss this in some of my essays on memoirs that deal with the experience of Alzheimer disease (AD), where I read traditional narrative structures as actually hiding, rather than expressing, memories. Some memories actually allow or pick a structure that allows the writer to be who they are within it and or may reveal this being done in collaboration with other people. My point is that the choices made to erase the markings of memory loss are fascinating and deserve to be made evident. Question: From your work, you are aware of pre-dementia labels of Mild Cognitive Impairment (MCI) and more recent DSM-V terms such as ‘mild neurocognitive disorder.’ What do you think about these as diagnostic categories? Are they useful? AB: I don’t know if I can speak about them diagnostically, but culturally such labels may indicate that people are currently hungry for terms that make sense of their own experiences and those of people around them. MCI, for example, may enable an explanation that treats memory loss as serious and can shift family perceptions in a positive way. How that label then becomes insinuated into the medical and care fields, and medical insurance plans in the United States, presents a different set of problems. The negative side of such labels is that they will trigger an adverse effect for some people as they grow anxious about a pre-dementia diagnosis and uncertain about what can be done for them in terms of care. So I am mixed about diagnostic labels because, in my own experience, I’ve talked with people for whom a diagnostic label such as MCI is a life preserver: ‘Thank God I finally know what’s wrong with me’ (even if it does not actually say much of anything about what is actually wrong). This is why I don’t use the general language of ‘neurocognitive disorders’ to describe or relate to people who have difficulty thinking, have memory problems or have cognitive challenges. If you look at these situations more broadly, then you can see some interesting intergenerational connections there with autism and differently cognitively abled people, which should help us to motivate changes in perception and practice around acceptance and loss. Question: Today we have a multitude of tests, drugs, and new biomarkers aimed at detecting and treating earlier stages of AD. Do you think we are medicalising and molecularising memory problems to the detriment of the people who suffer from them? AB: Yes I do. A couple of years ago we had a think-tank with Rhonda Montgomery, who works on creative caregiver intervention and education programmes to help caregivers better identify their own roles and strengths in their care-giving journeys and where to get support. We started with a mock commercial for drugs, with the typical contradictory image of a bright set of promising drug benefits along with a voice-over listing the possible horrifying side-effects. But we changed the message that our pill, designed to improve the quality of life of people with dementia, involved no pill at all; rather, it was a metaphor for changing the way people related to memory loss. The side-effects were that you might have to change your
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job description, or the way you schedule waking up people in the morning; in other words, the side-effects were systematic, not personal, and certainly not as risky as actual medications can be. So developing creative and meaningful opportunities for engagement in the community has no other side-effects apart from those on the system of care itself, which may resist change. Some of my views about the evidence comparing memory drug intervention with other non-medical approaches are outlined in my recent co-authored (with the amazing Kate de Medeiros) article, ‘Shall I Compare Thee to a Dose of Donepezil?: Cultural Arts Interventions in Dementia Care’ (see selected publications below). Question: A related issue, about which you have written, is the ‘marketing of memory’ and the commercial culture that has arisen as a response to memory problems. Do you think this culture’s imagery about the meaning of cognitive ‘health’ or ‘fitness’ helps or adds to public anxieties about the future? AB: For many reasons we have separated our bodies and our lives into different zones and functions, and this separation includes cognition and memory. In the process, we have lost our view of more holistic connections and how, especially for memory and ageing, we cannot understand our cognitive lives without seeing the interconnectivity between mind, body, biography, community and environment. There is no point to using any products or exercise regimes if they don’t have obvious purposes and meanings, and connect people to their communities. If we isolate and reduce people to their brains, then we miss the potential to care for them. I keep asking who is going to invent the fMRI that can link up 50 people at the same time and see what happens when they do something simultaneously. We work and think best as human creatures when we work and live together, yet we still do not really know how to assess the impact of memory in a relationship. You cannot give a pill to someone else and make someone else’s brain better, but you can actually change the behaviour of a different person over here and make the conditions of that person’s life better. This perspective is central to our development of care strategies for dementia. So overall, our commercial culture around cognition and memory is individually brain oriented, which means the collective segments that make for cognitive health have been pulled apart. Perhaps the American Heart Association and the Alzheimer’s Association should be the same organisation, to care for the heart and the brain together. Question: This question of caring also runs throughout our concerns with testing and diagnosis. Given your work and ideas about relational models of care in the case of dementia, what would you say should be our top priorities today? AB: The disability movement has moved ahead to the point where it has inspired designs of ramps where you can barely tell there is a ramp. We, too, shouldn’t be able to tell where the metaphorical ramp is for people with cognitive disabilities. There shouldn’t be a parallel universe for people with dementia; they should be able to continue to live in their communities among their support networks. But as a society we have become obsessed with identifying losses and difference, and we separate people out based on symptoms. Instead, we need to insist on tests to identify remaining strengths – for the strengths of relationship-building within existing communities. We need more awareness of the differences between ‘disease’ symptoms and iatrogenic, social symptoms for those who experience cognitive challenges. Too commonly, the environments in which we care for
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people with dementia are toxic and trigger many so called ‘challenging behaviours.’ Dementia is a cluster of symptoms that can certainly cause the perception of isolation because of the perception problems of not recognising people you know. The emotional intelligence required to know and trust others and form relationships is an art of living that speaks beyond rational language. Professionally, we also disregard emotional, embodied and symbolic communication and fail to integrate it within our overemphasised rational models of social relations. It is true, and aside from the sensationalising ‘tsunami’ metaphors about the future of ageing societies, the number of older people experiencing memory loss and other cognitive challenge is growing. Yet I am most heartened by the things I hear from people who want to be part of effective care programmes, such as a phone call I received from a fire department chief in Ozark, Alabama, who wants to be trained in our TimeSlips methods because, as a part of a first responder team, he wants to respond in an open way. Also, libraries and art museums are starting programmes such as the ‘Meet Me at The Moma’ programme for people with AD to visit the Museum of Modern Art in New York City (http:// www.moma.org/learn/disabilities/dementia). These are the worlds in which people already exist and to which they have been connected their whole lives. If these worlds can help to prepare them and us to meet their challenges, they won’t need to go into a parallel universe of isolation from their families and friends, who also don’t wish this to happen to them. In these worlds, we should think about including people with memory loss, so that restaurant staff, postal delivery workers, dentists and hair-stylists, and others can be trained to be made aware of who in their community suffers from memory loss and so not be shocked when they encounter them. Question: Your call to reflect on our practices of isolation for people with dementia is very important and certainly your work has demonstrated how more creative and communal programmes can be effective. What is happening within your communities and initiatives at the UWM, or your own future plans, which you think are leading the way? AB: First, I should tell you that the UWM Centre on Age and Community where I was Director has been reorganised to facilitate more American NIH (National Institute of Health) grants in more traditional scientific areas. And so I am now fully affiliated with the Department of Theatre and integrating my research with my teaching, while I am rebuilding what I was doing there in the Peck School of the Arts. I am also working on a large-scale project to bring creative, meaningful engagement to people living alone, which is the other wave of the future. We have encouraged so many people to stay at home, for many reasons, but now we need the support networks to allow them to do so, particularly across suburban-urban divides since suburban developments were not built with such support in their planning. Indeed, since infrastructural support there is so minimal, we’re doing a project called ‘Arts at Home,’ the first theme of which is called ‘The Islands of Milwaukee’ that engages with the challenges and potential solutions to social isolation. Question: This is a terrific idea and project. Here in Ontario, in Canada, there is a strong effort to solve the dementia problem by just keeping people at home longer. But adequate funding for household and community support lags behind and building new residential facilities is expensive too. In addition, little account is taken of the loss in productivity and
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increased stress for household members, mostly women, who do the care giving at home. Also, it is assumed that family members want to care, when in fact this is not always the case. Are these political and social tensions similar to what you are describing in your community? AB: Yes they are and especially for people on Medicaid in the United States. This tension between home and institution certainly affects the treatment and the public perception of dementia. Also, there is such a cheapening of products, foods, labor and jobs, that the emphasis on what can be done ‘on the cheap’ tends overwhelm what in fact are better solutions economically. And in large part this is what our ‘The Islands of Milwaukee’ collaborative community project is all about. We are working with the Interfaith’s Neighborhood Outreach, Telephone Reassurance Programs, Stowell Associates, and the Milwaukee County Department on Aging’s Home Delivered Meal Program to invite isolated elders to create stories and images that inspire regional conversations and action. Students at UWM’s Peck School of the Arts will also work with the elders and perform in culminating public events. We want to be able to use simple technologies to engage with people who are remote, so that they can connect and engage simultaneously. Question: If your Islands of Milwaukee project goes in the same and very successful direction as TimeSlips, will it expand to other areas and be carried forward by other people? AB: I hope so. I am now working with TimeSlips on a systems level that has become international in scope. This is also what happened with The Penelope Project and now we are trying to do the same again with this project. Question: We want to thank you for your time and such an enlightening conversation. Your work is very inspirational and we wish you all the best with it. AB: Thank you and it was great to speak with the two of you as well. Good luck with your project.
Weblinks to Dr Anne Davis Basting’s Projects TimeSlips Creative Story-Telling Project http://www.timeslips.org/ The Penelope Project http://thepenelopeproject.com The Islands of Milwaukee http://islandsofmilwaukee.org/
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Selected Publications Basting, A. D. (1989). The stages of age: Performing age in contemporary American culture. Ann Arbor, MI: University of Michigan Press. Basting, A. D. (2001). God is a talking horse: Performance of self in dementia. The Drama Review, 45(3), 78–94. Basting, A. D. (2003a). The arts and dementia care: A resource guide. New York, NY: National Center on Creative Aging. Basting, A. D. (2003b). Looking back from loss: Performing the ‘self’’ in Alzheimer’s disease. Journal of Aging Studies, 17(1), 87–99. Basting, A. D. (2006). The arts and dementia care. Generations, 30(1), 16–20. Basting, A. D. (2009). Forget memory: Creating better lives for people with dementia. Baltimore, MD: The Johns Hopkins University Press. De Medeiros, K., & Basting, A. D. (2013). Shall I compare thee to a dose of Donepezil?: Cultural arts interventions in dementia care research. The Gerontologist, 54(3), 344–353. McFadden, S., & Basting, A. D. (2010). Healthy aging persons and their brains: Promoting resilience through creative engagement. Clinics in Geriatric Medicine, 26(1), 149–161.
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Interview
Interview with Dr Anne Davis Basting, 21 May 2013
Dementia 0(0) 1–7 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214562136 dem.sagepub.com
Kevin R Peters and Stephen Katz
Background Dr Anne Davis Basting is a professor in the Department of Theatre at the Peck School of the Arts at the University of Wisconsin-Milwaukee (UWM). She is a leader in dementia care and highly honoured and awarded for advocating an alternative dementia culture. Her unique interdisciplinary background intersects scholarly, literary, documentary and theatrical arts with innovative programmes in community care and creative living. Dr Basting’s recent book, Forget Memory: Creating Better Lives for People with Dementia (2009), along with numerous articles and essays, outlines a new and inclusive way to think about ageing and memory loss. Her inventive story-telling project, TimeSlips: A Creative Story Telling Project (see weblink below), has blossomed into an international network of people who listen, learn, record and dramatise the narratives, songs, pictures and dances of people with memory challenges, whose creativity is acknowledged against the perceptions of decline and loss. Similar to her previous programme called ‘The Penelope Project’ in 2011 (see weblink below), Dr Basting’s new work is on ‘The Islands of Milwaukee’ (see weblink below), a project in collaboration with the Sojourn Theatre in Milwaukee, that aims to bring communal engagement to older adults living alone, and to catalyse public conversations about investing in a more connected community. Dr Basting also founded and continues to facilitate the Creative Trust, an alliance to foster life-long learning through the arts. A collaboratively edited book on the Penelope Project is forthcoming from the University of Iowa Press. Question: Dr Basting, thank you for agreeing to talk to us today, can you begin by telling us about your career and background? AB: I completed a PhD in Theatre Studies at the University of Minnesota where I looked at the social performance of ageing in similar ways to how other theatrical or cinematic performance has been studied. But I was interested in performance that was not just memory-based, but rather was created through the immediacy of improvisation. When I began to transform the dissertation into my book, The Stages of Age: Performing Age in Contemporary American Culture (1989), I realised it was also a powerful transforming moment for me. All the representations of performance I was looking at were of active and cognitively healthy people and, therefore, there were very few representations of any kind of physical or cognitive disability. Yet, within the interviews I gathered for the research were other hidden stories where people would say such things as: ‘he or she couldn’t perform anymore but we rallied around them.’ So when people would begin to have cognitive
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challenges, or ‘trouble thinking’ as I’ve come to call it, they really disappeared from the stage. They could no longer self-represent and I found that very fascinating. New questions then emerged for me, such as, when does a person become unable to perform and express who they are? Is it the stage? The audience? The actor? These are still intriguing questions for me some 15 years later, during which time I have been developing theatre techniques for and with people with significant memory challenges, while also learning so much from them about what it’s like to live with such challenges. Then there is the practitioner side of me, where I created a programme of improvisational storytelling called TimeSlips: A Creative Story-Telling Project beginning in 1995, from which I collected a wonderful compendium of stories and developed a workshop culture for telling stories. I saw these stories in terms of artistic creations, about which I wanted to tell others through a series of performances; so the dramatist, the scholar and the practitioner sides of me developed a whole field of practice simultaneously. This combination of professional and artistic roles informed my book Forget Memory, because it addresses both the cultural stories that we tell about memory loss and what they mean and explores the alternative stories and truly therapeutic possibilities that lead us to understand memory loss in far more collective, complex and humanistic ways. Question: Your book The Stages of Age: Performing Age in Contemporary American Culture (1998) was unique in being very ethnographic and anthropological in scope. AB: I had studied with Jill Dolan when she was teaching at the University of Wisconsin in Madison. She looks at the material practices of performance and writes deeply about the performances she observes. She is both writer and audience. So, I was trained on how to appreciate observation as a cultural moment in which you are also participating in the performance. Question: In the meantime, you have created, edited, published, performed and been associated with so many great stories about and by people who have cognitive challenges. Can you tell us about one that really stands out for you that tells us something more about what it means to have a change in memory? AB: The performance of To Whom I May Concern, by Maureen Matthews, is one where people with memory loss have created a play that they perform themselves by reading letters on stage. At one of the performances of the play in front of an audience of about 300, one of the performers suddenly looked at the page and could not identify or find where he was or even what the page was. He then looked up at the audience and said, ‘You’ll have to excuse me. I have Alzheimer’s.’ So here was a poignant moment of performance and nonperformance, where the roles clearly overlapped. The reaction from the audience was applause and a standing ovation, for what would normally be judged as a failure of performance. Question: As you know for younger people, for example in rock and roll performances, they often forget their music, fall off the stage, or need unexpected breaks to recoup and continue with the show. Yet, we accept these kinds of failures in performance as being
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natural and expected for these younger people, but not for older people who can’t ‘perform’ in cognitively competent roles. AB: That’s true. But the interesting thing about studying the social performance of people with dementia is that successful performance of themselves demands an erasure of all performance of the disease symptoms. I discuss this in some of my essays on memoirs that deal with the experience of Alzheimer disease (AD), where I read traditional narrative structures as actually hiding, rather than expressing, memories. Some memories actually allow or pick a structure that allows the writer to be who they are within it and or may reveal this being done in collaboration with other people. My point is that the choices made to erase the markings of memory loss are fascinating and deserve to be made evident. Question: From your work, you are aware of pre-dementia labels of Mild Cognitive Impairment (MCI) and more recent DSM-V terms such as ‘mild neurocognitive disorder.’ What do you think about these as diagnostic categories? Are they useful? AB: I don’t know if I can speak about them diagnostically, but culturally such labels may indicate that people are currently hungry for terms that make sense of their own experiences and those of people around them. MCI, for example, may enable an explanation that treats memory loss as serious and can shift family perceptions in a positive way. How that label then becomes insinuated into the medical and care fields, and medical insurance plans in the United States, presents a different set of problems. The negative side of such labels is that they will trigger an adverse effect for some people as they grow anxious about a pre-dementia diagnosis and uncertain about what can be done for them in terms of care. So I am mixed about diagnostic labels because, in my own experience, I’ve talked with people for whom a diagnostic label such as MCI is a life preserver: ‘Thank God I finally know what’s wrong with me’ (even if it does not actually say much of anything about what is actually wrong). This is why I don’t use the general language of ‘neurocognitive disorders’ to describe or relate to people who have difficulty thinking, have memory problems or have cognitive challenges. If you look at these situations more broadly, then you can see some interesting intergenerational connections there with autism and differently cognitively abled people, which should help us to motivate changes in perception and practice around acceptance and loss. Question: Today we have a multitude of tests, drugs, and new biomarkers aimed at detecting and treating earlier stages of AD. Do you think we are medicalising and molecularising memory problems to the detriment of the people who suffer from them? AB: Yes I do. A couple of years ago we had a think-tank with Rhonda Montgomery, who works on creative caregiver intervention and education programmes to help caregivers better identify their own roles and strengths in their care-giving journeys and where to get support. We started with a mock commercial for drugs, with the typical contradictory image of a bright set of promising drug benefits along with a voice-over listing the possible horrifying side-effects. But we changed the message that our pill, designed to improve the quality of life of people with dementia, involved no pill at all; rather, it was a metaphor for changing the way people related to memory loss. The side-effects were that you might have to change your
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job description, or the way you schedule waking up people in the morning; in other words, the side-effects were systematic, not personal, and certainly not as risky as actual medications can be. So developing creative and meaningful opportunities for engagement in the community has no other side-effects apart from those on the system of care itself, which may resist change. Some of my views about the evidence comparing memory drug intervention with other non-medical approaches are outlined in my recent co-authored (with the amazing Kate de Medeiros) article, ‘Shall I Compare Thee to a Dose of Donepezil?: Cultural Arts Interventions in Dementia Care’ (see selected publications below). Question: A related issue, about which you have written, is the ‘marketing of memory’ and the commercial culture that has arisen as a response to memory problems. Do you think this culture’s imagery about the meaning of cognitive ‘health’ or ‘fitness’ helps or adds to public anxieties about the future? AB: For many reasons we have separated our bodies and our lives into different zones and functions, and this separation includes cognition and memory. In the process, we have lost our view of more holistic connections and how, especially for memory and ageing, we cannot understand our cognitive lives without seeing the interconnectivity between mind, body, biography, community and environment. There is no point to using any products or exercise regimes if they don’t have obvious purposes and meanings, and connect people to their communities. If we isolate and reduce people to their brains, then we miss the potential to care for them. I keep asking who is going to invent the fMRI that can link up 50 people at the same time and see what happens when they do something simultaneously. We work and think best as human creatures when we work and live together, yet we still do not really know how to assess the impact of memory in a relationship. You cannot give a pill to someone else and make someone else’s brain better, but you can actually change the behaviour of a different person over here and make the conditions of that person’s life better. This perspective is central to our development of care strategies for dementia. So overall, our commercial culture around cognition and memory is individually brain oriented, which means the collective segments that make for cognitive health have been pulled apart. Perhaps the American Heart Association and the Alzheimer’s Association should be the same organisation, to care for the heart and the brain together. Question: This question of caring also runs throughout our concerns with testing and diagnosis. Given your work and ideas about relational models of care in the case of dementia, what would you say should be our top priorities today? AB: The disability movement has moved ahead to the point where it has inspired designs of ramps where you can barely tell there is a ramp. We, too, shouldn’t be able to tell where the metaphorical ramp is for people with cognitive disabilities. There shouldn’t be a parallel universe for people with dementia; they should be able to continue to live in their communities among their support networks. But as a society we have become obsessed with identifying losses and difference, and we separate people out based on symptoms. Instead, we need to insist on tests to identify remaining strengths – for the strengths of relationship-building within existing communities. We need more awareness of the differences between ‘disease’ symptoms and iatrogenic, social symptoms for those who experience cognitive challenges. Too commonly, the environments in which we care for
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people with dementia are toxic and trigger many so called ‘challenging behaviours.’ Dementia is a cluster of symptoms that can certainly cause the perception of isolation because of the perception problems of not recognising people you know. The emotional intelligence required to know and trust others and form relationships is an art of living that speaks beyond rational language. Professionally, we also disregard emotional, embodied and symbolic communication and fail to integrate it within our overemphasised rational models of social relations. It is true, and aside from the sensationalising ‘tsunami’ metaphors about the future of ageing societies, the number of older people experiencing memory loss and other cognitive challenge is growing. Yet I am most heartened by the things I hear from people who want to be part of effective care programmes, such as a phone call I received from a fire department chief in Ozark, Alabama, who wants to be trained in our TimeSlips methods because, as a part of a first responder team, he wants to respond in an open way. Also, libraries and art museums are starting programmes such as the ‘Meet Me at The Moma’ programme for people with AD to visit the Museum of Modern Art in New York City (http:// www.moma.org/learn/disabilities/dementia). These are the worlds in which people already exist and to which they have been connected their whole lives. If these worlds can help to prepare them and us to meet their challenges, they won’t need to go into a parallel universe of isolation from their families and friends, who also don’t wish this to happen to them. In these worlds, we should think about including people with memory loss, so that restaurant staff, postal delivery workers, dentists and hair-stylists, and others can be trained to be made aware of who in their community suffers from memory loss and so not be shocked when they encounter them. Question: Your call to reflect on our practices of isolation for people with dementia is very important and certainly your work has demonstrated how more creative and communal programmes can be effective. What is happening within your communities and initiatives at the UWM, or your own future plans, which you think are leading the way? AB: First, I should tell you that the UWM Centre on Age and Community where I was Director has been reorganised to facilitate more American NIH (National Institute of Health) grants in more traditional scientific areas. And so I am now fully affiliated with the Department of Theatre and integrating my research with my teaching, while I am rebuilding what I was doing there in the Peck School of the Arts. I am also working on a large-scale project to bring creative, meaningful engagement to people living alone, which is the other wave of the future. We have encouraged so many people to stay at home, for many reasons, but now we need the support networks to allow them to do so, particularly across suburban-urban divides since suburban developments were not built with such support in their planning. Indeed, since infrastructural support there is so minimal, we’re doing a project called ‘Arts at Home,’ the first theme of which is called ‘The Islands of Milwaukee’ that engages with the challenges and potential solutions to social isolation. Question: This is a terrific idea and project. Here in Ontario, in Canada, there is a strong effort to solve the dementia problem by just keeping people at home longer. But adequate funding for household and community support lags behind and building new residential facilities is expensive too. In addition, little account is taken of the loss in productivity and
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increased stress for household members, mostly women, who do the care giving at home. Also, it is assumed that family members want to care, when in fact this is not always the case. Are these political and social tensions similar to what you are describing in your community? AB: Yes they are and especially for people on Medicaid in the United States. This tension between home and institution certainly affects the treatment and the public perception of dementia. Also, there is such a cheapening of products, foods, labor and jobs, that the emphasis on what can be done ‘on the cheap’ tends overwhelm what in fact are better solutions economically. And in large part this is what our ‘The Islands of Milwaukee’ collaborative community project is all about. We are working with the Interfaith’s Neighborhood Outreach, Telephone Reassurance Programs, Stowell Associates, and the Milwaukee County Department on Aging’s Home Delivered Meal Program to invite isolated elders to create stories and images that inspire regional conversations and action. Students at UWM’s Peck School of the Arts will also work with the elders and perform in culminating public events. We want to be able to use simple technologies to engage with people who are remote, so that they can connect and engage simultaneously. Question: If your Islands of Milwaukee project goes in the same and very successful direction as TimeSlips, will it expand to other areas and be carried forward by other people? AB: I hope so. I am now working with TimeSlips on a systems level that has become international in scope. This is also what happened with The Penelope Project and now we are trying to do the same again with this project. Question: We want to thank you for your time and such an enlightening conversation. Your work is very inspirational and we wish you all the best with it. AB: Thank you and it was great to speak with the two of you as well. Good luck with your project.
Weblinks to Dr Anne Davis Basting’s Projects TimeSlips Creative Story-Telling Project http://www.timeslips.org/ The Penelope Project http://thepenelopeproject.com The Islands of Milwaukee http://islandsofmilwaukee.org/
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Selected Publications Basting, A. D. (1989). The stages of age: Performing age in contemporary American culture. Ann Arbor, MI: University of Michigan Press. Basting, A. D. (2001). God is a talking horse: Performance of self in dementia. The Drama Review, 45(3), 78–94. Basting, A. D. (2003a). The arts and dementia care: A resource guide. New York, NY: National Center on Creative Aging. Basting, A. D. (2003b). Looking back from loss: Performing the ‘self’’ in Alzheimer’s disease. Journal of Aging Studies, 17(1), 87–99. Basting, A. D. (2006). The arts and dementia care. Generations, 30(1), 16–20. Basting, A. D. (2009). Forget memory: Creating better lives for people with dementia. Baltimore, MD: The Johns Hopkins University Press. De Medeiros, K., & Basting, A. D. (2013). Shall I compare thee to a dose of Donepezil?: Cultural arts interventions in dementia care research. The Gerontologist, 54(3), 344–353. McFadden, S., & Basting, A. D. (2010). Healthy aging persons and their brains: Promoting resilience through creative engagement. Clinics in Geriatric Medicine, 26(1), 149–161.
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