The NowHere Manifesto: Art & Dementia as art Marjolein Gysels, Alice Thwaite & Vera Broos �1�
Laundry Pile — By Laurien Mulder �2�
Introduction Project NowHere: The Context This Manifesto is one of the outputs of Project NowHere, an international collaboration between the Netherlands and the UK on art and dementia. It initiates the formulation of the core foundations of this field of practice. The Project: Need, Aim, Approach This project is a response to the need for a more solid basis for artists working with people with dementia. As the benefit of the arts for people with dementia is increasingly recognised, this field is rapidly evolving. However, these art programmes are not always well supported, lack continuity, and are of varying quality, and artists feel very isolated when working in settings where there is little understanding of the merits of art. Another reason for the need for a project like NowHere, is that the use of art in dementia care is often situated within the medical model, which inhibits its creative potential. The NowHere project aimed to develop an artistic model, a creative space for artists working with people with dementia in care homes. It provided the opportunity to share practice, reflect and learn from the experiences and expertise of artists from different countries. Two cultural managers, one researcher and seven artists (three from the UK, and
four from the Netherlands) visited each other’s organisation where they exchanged experiences, ideas, methods and art. This was facilitated through activities such as lunches, rituals, walks, and shadowing. These contacts continued and expanded between placements through mail art, online communication, exhibitions and photo and video diaries. Art and Dementia as Art Based on our experiences, we wanted to manifest the nature of working with art and dementia, and make a statement about its place, significance and potential, and the conditions for it to flourish. Project NowHere provided the opportunity to look at this field from the perspective of the arts for the first time. The project enabled us to view what happens in this work through different lenses, worn by the different artists, researchers and cultural managers involved, and give it a voice. This field needs to find its own position among the competing discourses (medical, social, artistic) that are attempting to appropriate it. We broke out of the straight jacket of the biomedical perspective and breathed life into a new artistic way of seeing, being (with). This Manifesto brings together this work, in its own terms, and articulates why and how we collectively practice it. The artists contributed to the Manifesto with statements they felt were important from their own different disciplines and in the media they use in their work: image, text, sculpture, music, acting. This is a process that
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started with only a handful of people, but this provided the perfect conditions to develop productive relationships and keep the focus on art. With this Manifesto we aim to open up this field and invite others who are actively using art with people with dementia to join in and develop it further. We hope that artists recognize some of the points which the NowHere team discovered they have in common. We hope to elicit a sense of bonding between artists who do this work, as they know what it means to work in environments where artistic practices are not always well understood. We wanted to let artists know that they are not alone in this work. Other artists are working in similar circumstances, in this tension between sterile clinical environments and the inspiration from encounters with those with long and rich lives.
Two developments clearing the way for arts and dementia It is not generally known that professional artists are working with older people in the later stages of dementia to jointly create art. Nevertheless, this is becoming increasingly accepted and is producing novel and intriguing work. As these art practices are much to the satisfaction of all involved, they
are becoming more widespread in a variety of settings where people with dementia are living, in both health and social care and community settings. That such art projects are happening with this group of vulnerable people, is due to two major developments which are currently taking place in our society. On the one hand, there is the ‘social turn’ in the field of the arts, which made it possible for artists to acquire access to the care contexts of people who are otherwise anxiously shielded from the risks of public life. On the other, a parallel social turn is observable in medicine, where the concept of health is undergoing a considerable rethink.
The ‘social turn’ Art has taken a ‘social turn’ in response to the commercial logic of Neoliberalism which appropriated art’s means and images and turned them into a commodity. Bisshop analysed the social and political circumstances that made it possible for participatory initiatives to develop [1]. These were a reaction to the prevailing capitalist values, which had conquered art. In the new Neoliberal order, art came in the service of the logic of the market and was transformed into a mere commodity, to be consumed by a passive audience. Participatory art resists the rationale of the market and revives old ideals such as the collective and collaborative efforts to
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achieve greater engagement with real life [2]. It aims to involve communities in building social relations and it is particularly used in the realisation of democratic ideals in our changing contemporary societies [3]. The fundamental transitions we go through due to the crumbling of welfare systems as well as the cuts in arts and culture budgets paradoxically form the conditions in which grass-roots participatory art initiatives emerge. The care sector, involved in the most radical reforms since the establishment of the welfare state [4], is attracting a growing number of participatory artistic initiatives in the search for new solutions. However the care environment – involving specific institutions and a variety of new stakeholders – gives artistic work in this sector a different character, and changes some of the original features of the participatory arts.
taken for granted, such as the concepts of health and disease itself [6]. Where health was previously understood in its biomedical sense, as an objective, neutral concept, it is now seen as a complex and culturally dependent construct. In such a social model of health, social participation may no longer be such an alien idea and it is here that health care has been able to accommodate the arts.
Dementia
That the arts – without an explicit and primary clinical aim – would have set such a firm foot on the territory of health care, was until fairly recently unimaginable. But ageing populations are having an effect on the organisation of health services. Increased longevity of people is changing the burden of disease from acute to predominantly chronic and degenerative [5]. Consequently, a different model of health care is developing in which the emphasis is less on the cause of a single disease than on the long-term investment in influencing factors that determine health. These developments also have an impact on concepts which have hitherto been largely
The increasing prevalence of dementia is certainly one of the gravest matters of concern of our times. Worldwide, it is estimated that 46.8 million people are living with dementia and this number is set to double every twenty years [7]. The urgency of the situation is above all fuelled by the economic concern that the needs of frail older people will come to dominate health and care resources [8] [9] and that the current care modalities are unsustainable and inappropriate for large numbers of people with dementia [4]. The Alzheimer’s movement has worked hard to stress the need for a quick response to the challenges ahead. They announced Alzheimer’s as a global health priority for which epidemiological studies provided the evidence in numbers and figures. Their use of apocalyptic imagery of ‘tsunamis’, epidemics, and ‘crumbling’ health systems was meant as a call for immediate global action. This fuelled
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the destructive discourses spread through the media and influenced popular conceptions of dementia as the ‘emptying out of the self’ the ‘removing of what makes one human’ [10] [11]. These malignant social constructions of dementia [12] have serious consequences for the social position of those with dementia and for the care they are deemed worthy of. This is reflected in the low status and the difficult working conditions of care workers who provide hands-on care. The current restructuring of the care sector across Europe presents an additional challenge to care for people with dementia where meaningful activities and imaginative approaches to support and enrich their daily lives are typically seen as extra, and are the first to be axed as a result of austerity measures. Art with people with dementia in care homes is often dependent on the dedication and initiative of the sole activity worker, who is often responsible for whole departments of severely impaired residents. It is not surprising that what they are able to offer is limited. While their positions are insecure in the current climate of restructurings, it is understandable that they may not be enthusiastic about the arrival of professional artists in the care home. However, artists are increasingly negotiating their way in to care institutions to fulfill the huge need for creativity in these settings and their contribution is often of such unequivocal value that they develop warm
relations with all involved, including those who at first feel threatened by their work.
Participatory art Participatory art is art that engages with people and social processes. Artists began extending their art practices beyond their studios, engaging with the social dynamics of real life as their material, media and inspiration. The variety of labels – participatory art, community art, social practice, social design, dialogic art etc – point to the diversity of functions, forms and contexts of this work [13] [14]. By putting art back into social life, participatory art invited a broader range of people, including those not used to visiting art galleries, into a critical dialogue about the role and place of art. Participatory artists’ works are often not tangible objects, likely to be performances, concepts, happenings or workshops. Here we will consider the more recent involvement of participatory art in care, where its participative qualities are particularly suitable. This applies par excellence in the case of care for people with dementia where the approach is indispensible.
Participatory art in care as mirror Now that artists have started to work with participatory art projects in care settings, expertise is growing in these specific contexts.
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From this vantage point it is possible to critically evaluate participatory art practices in the community settings where they originally developed and the meanings that have been ascribed to them. This in turn informs practices that are taking place in care contexts. The introduction of participatory art practices in care contexts has led to the reconsideration of some of its original defining characteristics. Previously, participatory art had an outspoken political purpose, having developed as a reaction to the neoliberal order and the expansion of a market mentality to every section of society, including the arts. Participatory artists felt compelled to counter a world of spectacle and repetition [2]. As participatory art becomes more widely known, it is asked to find innovative solutions for a society in transition [15]. It is specifically called upon to come up with creative approaches that break open the patterns and mechanisms of the old welfare state. Participatory art facilitates community participation ensuring that initiatives start from local concerns. But there are concerns about the type of participation it is supposed to achieve, and which democratic ideals it should serve. For example, there is a danger that participatory art might be expected to mould citizens to fit better into a society in which citizens are expected to bear individual responsibility for what was previously provided collectively.
Participatory art in care with people with dementia is assigned a different role and escapes to a certain extent this political logic. In care contexts, concerns are about taking over where pharmacological treatment falls short, and about the finding of new approaches to institutional cultures, and environmental challenges. However, this should not let us lose sight of how politically charged and sensitive this field is. Where governments invest heavily in finding a cure for dementia, they are simultaneously drastically cutting back in the care sector. It is in this context that artists are welcomed in long-term care settings, as they specifically focus on the areas of personal attention for which there are no resources left after the medical and technical tasks of treating, cleaning and feeding have been fulfilled. Besides, every art is political, as it is always a response to the social environment it is operating in. For us, the NowHere group, the field of art and dementia has become a political issue as we have first-hand experience with what artistic approaches can accomplish in the field of dementia.
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Art and Dementia Map — By Laurien Mulder
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Participation Whether art with people who have severe cognitive impairments in the advanced stages of dementia can be called participatory is a contested question. This is not a mere technical matter but the labelling has profound implications for those involved. Just as a diagnosis of dementia has direct consequences for people’s legal rights and position in society, so the judgement whether their contribution to an art project is considered participation has an impact on whether they will be included in such activities. The decision to label their inclusion participation is a verdict on whether it is worthwhile to include people with more severe impairments. It is a verdict on whether they are worth it. The discourse of participatory arts is generally targeted at the rehabilitation of people as more autonomous citizens who can manage themselves better. The language is of able-bodied citizens who come to joint decisions about the route to follow towards a fair and democratic society. There is no mention of people who lack the capacity to join in to this task due to illness or disability.
of the reality that makes us all vulnerable to disease and misfortune, and that as we age, we will increasingly have to rely on others for support. This is the first contribution of art and dementia to the participatory arts. Merely working with this group, makes us aware that something essential is missing in the field of participatory art in its political manifestation. And while continuing to work with people who are confused, or who lack the verbal means to express themselves in a rational manner, is leading to the development of insights into the concept of participation itself, artists are learning that the way participation is currently defined is much too narrow and that it only refers to those people who are healthy and who are judged to have adequate mental capacity: it is for people who are able to make paintings, recount vivid memories, or follow a choreographer’s instructions. In the field of dementia, artists are now discovering that people who do not live up to these standards can make astonishing contributions to an artwork. Within the limits of their condition, or sometimes precisely because of how dementia affects them, they are able to create work of artistic significance.
Art with people with dementia corrects this and addresses the presupposed norm of normality in participatory art. It reminds us
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Connectivity — By Kate Sweeney
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Art and dementia Characteristics of art and dementia When we refer to art in relation to dementia we have in mind artists working with people who are in the more advanced stages of dementia, living in care homes as this is where most of this work has been carried out and is the context in which the expertise developed. The events often also include care workers and relatives, as participants need support to enable them to participate. Art with people with dementia includes drama, music, dance, the visual arts, poetry, storytelling. Artists usually base their interventions on their own specialisations and their unique artistic competences and sensitivities. They start by focusing attention on the comfort and presence of participants and explore their personalities, their mood and the extent to which contact is possible. This attention is something which the artists and their assistants try to hold on to throughout the activity. The primary objective of artistic activities with people with dementia is to establish contact with them, and those who do engage with others, to offer them a meaningful
experience. Using a repertoire of artistic tools and approaches, the artist creates a fictional framing of the occasion. Methods that touch on the senses – multi-sensory approaches, which involve multiple senses simultaneously – are most successful for engaging people who are otherwise difficult to reach. Depending on the dynamics that evolve during the session, the artist can take the role of the pilot, steering the event in a preconceived direction, or accept a co-pilot next to her, or perhaps even put the plane on automatic pilot, and enjoy the swoops and sights together with the passengers, going wherever the wind takes them. This requires dedicated and genuine energy for the duration of the activity, and it can produce a variety of unexpected results. What happens in these activities is a reflection of the most authentic human responses to the situation of which they are part. This reveals the participant who is often seen as a ‘needy resident’ or depending on the particular culture of the setting even as ‘patient’ in these heavily medical context of the care home, as a person with a unique life history. Through genuine interest in the person’s concerns, personality, and qualities, the approach negates the restrictive conditions and rules inherent in care institutions and the
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stigmatising effects of the images of dementia that circulate in the wider society. This joint creative experience has a positive effect on all those present and the more engaged one is, the more special and satisfying this becomes. Sometimes this leads to better relationships between care workers and residents, friendships between residents, and a greater sense of empathy in care work, or a sense of engagement with caring relationships in society more generally. Moreover, these events are works of art and need to be valued as such.
The intervention: in the middle of NowHere When the artist starts an art intervention with people in a care home, she creates and enters a world which stands apart from the ordinary life world. This is a world which has a separate spatial and temporal frame, where only the here and now counts, and into which she will venture and dwell together with the other participants. It is here, in these moments, that art happens, in the middle of NowHere.
Contact The intervention has a simple purpose: to reach and establish contact with people with dementia. Artists discover that it is best to start with small advances towards the people they work with. They gently test the waters, introduce themselves, see whether they can sense a person’s presence. Sometimes people can be immersed in total silence, or perhaps they are absorbed in an activity or conversation with others who the artist cannot perceive. Reaching a person is a task in itself and requires time, specific skills and a certain disposition. The artist needs to have a readiness to meet the person with dementia, as if she has prepared a meeting ground into which the person with dementia feels welcomed and safe to move. Artists who are driven by a sincere interest in these older people will be able to reach them. … I ‘m interested to try to really level with the world of these people. So not that I am here and that they are there, but to try to find a point where you meet each other (Laurien, visual artist)
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Multidisciplinary and multisensory The artist brings her expertise in a specific discipline, such as poetry or music, but in interaction with people with dementia she soon moves beyond the boundaries of a single discipline. As she tries to reach the person with dementia, she reinforces the media she uses by combining it with other disciplines. A poet will soon explore the musical elements of the words she is using or translate them into dance. Artists from various disciplines are simultaneously experimenting with different sensory modalities. The artist discovers the benefit of working together with artists adept at other artforms, thus extending the range of sensory possibilities through which people can be reached and engaged and which can add to a sense of self. Jacqueline: And when you work with a dancer, what, how does it work, like… Nicky: Ooh, she’s, she’s amazing, I mean, I think, when I start to work with her, she just loooved being able to, she often worked on her own, and she loved being able to have live music, because sometimes I just sort of improvise a wee bit and respond to how she
is, what she is doing. And which she can’t do when she has put a CD on, so and that’s been really nice, so you can often, it is very organic, how I work. (Nicky and Jacqueline, musicians)
2 Ladybird
2 Jopie
Uncertainty Depending on the artist’s intention, her disposition and skills, but also the environment, the person with dementia and her openness to the situation, will determine what is going to happen. Contact is in most cases not a given. In a group, it is uncertain whether anyone will engage with the intervention. Although an artist’s skills will contribute to how an intervention will turn out, how the session will proceed remains unpredictable. The dynamics in a group with which the artist previously had a fantastic session, can be a complete disaster the next time, and vice versa. It is possible that nothing happens at all in a session, or that people reject the activity. This does not always mean that a session failed. Negative emotions such as anger or sadness, are not necessarily bad, and refusal to participate may be an active position taken
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by a person, meaningful in that particular situation. I really like the resistance, cause there’s energy in it. (Monique, theatre artist)
process which can be triggered and cultivated into a collective experience. It is nice to use artwork and photography for me, because people can just be totally imaginative without needing to be right, there is no right answer… anything that’s get said, … and then we just go with that. (Kate, visual and mixed media artist)
Improvisation Artists generally enter a session with a plan or a question. This gives them something to hold on to when they facilitate people’s participation in the artistic work. But this plan generally only provides the contours for the activities, and once it is initiated, it can unfold in any direction. This requires skilled responses by the artists, which relies on their insight into when to probe or challenge and when to relinquish control and hand over to participants. They support people in participating in the activities within the limits of their capabilities. However, people’s interactions also reveal improvisation, responding to the contingencies of the situation. A successful session follows from mutual inspiration through free expression and risk-taking in a fail-free environment. Improvisation is not the prerogative of the leading artist but turns out to be a productive
Joy The involvement of people with dementia in creative activities works on the level of selfexploration and expression. Artists as co-participants are witnesses of what works well and what does not work and provides them the opportunity to adjust these elements. Artists who work with people with dementia are in this type of work because they love people and have the skills to work with them. When talking about their work, joy is an important aspect in their accounts. Without their enthusiasm they would not be able to create such enjoyable events. Joy is a prerequisite for working with people with dementia who are most sensitive to the sincerity and intentions of people which they pick up with the multiple sensory channels which help them navigate
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through social interactions. …the women think: oh folding, you know! They love folding. So we are hours folding the washing [chuckles] with them. And when you put a (washing) line and hang something onto it, it will jump, you know. I remember this moment with this man, I pulled and this sock was jumping, and (mimicks the man’s reaction) huh? And then HE (is acting it out) starts pull-ing, and I put MORE socks on it, and then ALL these socks, they are JUMping up and down…! (everybody laughing)…you know, we were having so much fun. (Riska, theatre artist)
Magic moments The specific art session on offer by an artist will be taken up in various ways by the selected participants depending on their specific personalities, interests, and moods at the time. Their engagement is variable during the workshop. In most sessions there will be meaningful moments, however small or short, much to the satisfaction of the artist.
so inspired that they become completely enchanted by their artistic experience. These are moments when the person takes his task much further than expected, responds in ways beyond the limits of his usual physical, mental, or behavioural capacities, or adds a dimension to the flow of events which were beyond the imagination of the other participants. For example, when a man is so enthused by a music performance that he stands up and takes on a performing role by directing the music as well as the others’ participation. Or when a woman whose professional carers had never heard her utter a word is touched by the special atmosphere in the room created by an actor and expresses herself in highly poetical language. Such instances do not occur frequently, but show the power of art as a profound experience, often inspiring others present, and leaving unforgettable impressions.
There are occasions that a person becomes
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But ehm, but it is that feeling, of just like, I know we delivered a great session when I walk away, just being really on top of the world. (Nicky, musician)
The process is the product As in participatory art in other areas, the work with people with dementia is also predominantly process-driven. The current accountability system directs these projects towards concrete outcomes, which is at odds with participatory art, as it is the social dynamics that constitutes the work of art. In the work with people with dementia, the process receives even greater emphasis as a defining characteristic. Where people without dementia in other fields of participatory art can be summoned to work towards a piece of art, this is not evident for participants with dementia. Their contribution lies in the significance of these precarious, not per se intentional moments which are often small, sometimes hardly noticeable but which can be of enormous artistic significance in the context of the intervention. This change in relationship between process and product in art with people with dementia happens to such an extent that the product
merges with the process, which then makes the product superfluous. The process is then the artwork.
P film ‘the Cruel Sea’
Art It is important that art practices conducted by artists in care settings develop a language of their own. For this, detailed studies are needed which are capable of capturing their strengths and unique features, which include aesthetic process, craft, fiction, imagination, stylistic innovation, material, conceptual experimentation, etc. By approaching these art practices in their own terms, we are able to differentiate them from other professions in care institutions that are making use of the arts, such as art therapy or the work of activity coordinators. This will also clear the widespread confusion of art with therapy and entertainment and value each of these practices on their own merit. Articulating what art practices in dementia care are about and what they accomplish
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makes it possible to situate them in participatory art and in the wider landscape of the arts, and to acquire insight into their artistic significance. Where participatory art represents a shift in art and is considered as avant-garde as it overturns and rethinks various conventions in art, the best examples of art with dementia, take this development in the arts even further. In this sense can dementia art be seen as a new genre within the ever-changing domain of participatory art. Artists who are experimenting with art with people with dementia are venturing onto unexplored territory and are discovering unsuspected possibilities for working with the unimaginable. They are the Robinson Crusoes who make the islands of care homes habitable. As they are learning the life worlds of the residents, they are finding the tools with which to transcend mere existence in barren environments in which only the conditions for survival are available, in the form of nutrition, shelter, clothing. With these tools, the artists and residents together make something happen.
These happenings can be very small, such as a person who otherwise seems to be unreachable tapping his foot to the beat of the music. These small gestures however, can be immensely meaningful depending on how people usually relate to others and how they stand in life. With the creative means they transcend day-to-day life, and have an experience which technical aids alone cannot achieve. These are moments of deep human contact between a participant or the whole group and the artist. Artists and residents arrive at these extraordinary experiences through the arts, through imagination, the brightening up of the everyday, which makes it possible to open up for wonder. The artists’ genuine interest in the residents warms up the environment which is where contacts are made and relationships sealed. Such an encounter contains a tension between social intervention and the aesthetic, it is where art happens.
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W Laurien’s Reflections
Collage Chain Letter — By Kate Sweeney
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Research Now that art projects are entering into care settings, and are starting to make a claim on the scarce resources in care contexts, they are also expected to demonstrate their value and stakeholders controlling the purse strings require evidence of effectiveness and impact. Studies therefore tend to focus on revealing a causal relationship between art and health, as well as on the numbers of people reached. This type of research is conducted through large surveys and collects demographic characteristics of visitors to cultural institutions in order to understand its impact and to monitor cultural planning and strategies. The preoccupation with establishing a causal relation, is also one of the reasons for the popularity of the neuroscientific studies in art, where it is possible with imaging techniques to relate people’s reported perceptions to specific areas in the brain.
These types of research are valuable, also in research on the arts; the problem is that they receive precedence over other research because they generate the data which fit the positivist assumptions underlying evidence-based medicine (unity of method and value-free enquiry). However, these are not suitable for getting at the essence of art and at the way people are affected by it because they are contrary to the constitutive features of art. Conventional criteria for the assessment of validity and reliability that follow from these approaches are therefore also not suitable for the evaluation of art programmes [16]. This emphasis on positivist assumptions obviates the development of new ways of understanding [17], and the validity of findings that emerge from other study designs is not recognized. Research on the intrinsic characteristics of art requires approaches that are close to the ways of working in the arts [18].
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Therefore a philosophical space of creative enquiry has been suggested through the use of an anthropological approach and informed by the medical humanities [14]. Qualitative approaches and art practices have many features in common and work with similar processes: they are both crafts, the researcher/ artist is the instrument of enquiry/creativity, they are both holistic and iterative. They need reflection, problem identification and solving and the interest and ability to address intuition and creative meaning making. It is important that art projects which are active in the care sector are not misinterpreted as clinical services. The best way to appreciate such projects for what they are is to combine scientific and artistic expertise, and to work collaboratively and crossdisciplinary. Researchers and artists can draw on each other’s strengths and use the advantages of working as a team. Assessment
of interventions as a joint and ongoing process rather than being imposed as an additional and separate procedure enhances validity and transparency and ensures that new insights can be preserved and built on.
Conclusion This Manifesto lays the foundation for an artistic model for art with people with dementia. If we continue to conceive this field as instrumental to the therapeutic effects for people with dementia, it will not achieve its potential to unsettle established logics and keep pace with current developments in care and society. With this document we want to state that the field of art and dementia exists as art. This is little known, beyond the direct circle of people who are active in this area. Working with people with dementia tends to be perceived
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as a charitable and somewhat embarrassing occupation. When involved in an art session with this group, one soon realizes that this is not the case and that to the contrary, it is where novel insights emerge, as art has never been practiced this way with this group of people. This creates the opportunity for them to contribute from their specific subjectivities, influenced by their particular social positions, how neurological changes affect them, but nevertheless by their wisdom embodied over long lives. Where others use art and dementia for therapeutic or occupational purposes, artists offer aesthetic forms that intervene with these modalities, questioning their applications, the places these occupy, and how art itself relates to these practices. When introducing art into care homes – which are places that most often lack the conditions for creativity, such as
influences that appeal to the senses, or opportunities for meaningful engagement (even in one’s own daily existence) – it interferes at different levels. Art shakes up the usual environmental conditions in which older people reside, questioning what the basic elements for living are. It reveals the person with dementia as an indispensible participant to the artwork, which touches on views upon the self and relationships with others. This work is also important for the field of art itself as it generates new art forms in the process of engaging with people with dementia through creative means. Their responses tend to twist perception and open up to unexplored terrain for creativity that feed artists’ inspiration. These change how ageing is experienced and unleash new ways forward in art. These can, in turn, influence the way we view the most pressing matters of concern and provide us with the instruments for tackling them.
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Art and dementia not only exists, but it is a specific genre in the participatory arts, and as it is developing through practice it needs further specification. The artists who are conducting this work are developing increasing levels of experience in this area but the right conditions are needed to develop this field of practice into a profession. This would ascertain more consistent quality in this work and ultimately raise the profile of this field.
Recommendations In addition to the use of art with people with dementia for therapeutic purposes, this field needs to be recognised as art. It needs a situated space for philosophical and artistic enquiry where it can be
considered for its artistic significance. Art and dementia needs to be understood as a development in response to specific current societal, political and normative systems. More concretely, it requires a more systematic mapping of existing practices than is currently the case in order to develop an agreed understanding of what constitutes quality in this field. Good practice examples need to be collected and disseminated in order to advance the field. Art and dementia as practiced by professional artists as art needs to be understood in relation to its more instrumental uses, for example in clinical practice, in order to capture the full range of its possibilities,
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differential benefits and areas of combined value.
● are able to capture sensory perception and meaning making
As this field has only just started to develop, it needs to be studied with exploratory research approaches, before experiments can be conducted to test practices.
Training opportunities should be in place for artists working with people with dementia to ensure that participants experience high quality art sessions delivered with sensitivity to their limitations. This requires the development of curricula including: ● state of the art knowledge of successful methods/approaches ● knowledge about dementia ● person-centred approaches ● by means of academic courses and opportunities for the exchange of practices
Research needs to be conducted with methods that do not frustrate but develop the unique strengths of artistic work with people with dementia. These need to be methods which are close to the ways of artistic working: ● they should be qualitative, or mixed method ● focus on experience, and enable the complexity of this work ● have the freedom to allow for improvisation and invention
The conditions should be in place for this work to flourish. This means that: ● it is adequately resourced
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● there is guidance based on expert consensus initiatives are developed for rolling out the knowledge and skill-base of this work to other groups involved in the care for people with dementia (professional and informal carers, volunteers etc), so that it becomes part of the culture of care settings ● artists have the role of innovators and inspirers which they can fuel by running experimental labs for innovation which can then be integrated into daily practice Awareness needs to be raised about the potential of art interventions in care contexts to overcome misconceptions that art is an extra. This needs persuasive arguments towards policy, funding organisations, the care sector and the public through a combination
of available evidence, advocacy, and the voice of user groups.
Acknowledgements This Manifesto was produced in the framework of Tandem Community & Participation, an initiative of the Dutch Cultural Participation Fund (FCP) and European Cultural Foundation (ECF), implemented by MitOst e.V. in partnership with the British Council and the Dutch Centre of Expertise for Cultural Education and Amateur Arts (LKCA).”
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We also thank the NowHere artists on whose creative practice and critical reflection this Manifesto is based:
Equal Arts Kate Sweeney, Visual artist Nicky Rushton, Musician Claire Ford, Mixed-media artist
Zona’s Kiosk
We also thank the artists who worked in the project NowHere Station, which was an adjunct project to NowHere for the development of new practices, and for which we are grateful to the Sluyterman Van Loo Foundation for its support. Ulrike Bartels, Visual artist Jaap Oostra, Theater artist Rens Bouma, Visual artist Sandra Stark, Theater artist Ina Stockem, Dancer
Laurien Mulder, Visual artist Jacqueline Fleskens, Musician Monique Hoving, Theater artist Riska Wijgergangs, Theater artist
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NOTES Authors Dr Marjolein Gysels, Anthropologist. Centre for Social Science and Global Health University of Amsterdam (UvA), The Netherlands www.anthropologyinhealth.com mhgysels@gmail.com Alice Thwaite, Cultural Manager Northern Shape t/a Equal Arts Gateshead, UK www.equalarts.org.uk alice@equalarts.org.uk
Vera Broos, Cultural Manager Zona’s Kiosk Amsterdam, UK www.zonaskiosk.nl info@zonaskiosk.nl
Image and Sound Title: Laundry Pile By Laurien Mulder and the people from Meer & Oever in Amsterdam. Photography: Leo Wensveen Title: Art and Dementia Map By Laurien Mulder and the people from Meer & Oever in Amsterdam. Photography: Leo Wensveen
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Title: Connectivity By Kate Sweeney. Reflection on what happens during an art session. Title: Collage Chain Letter By Kate Sweeney Throughout the project a chain letter was sent through between the artists, building on their thoughts about their work. The collage stands for the collaboration between the Netherlands and the UK. Title: Laurien’s Reflections By Laurien Mulder Laurien’s reflections on her work with people with dementia.
Two songs Title: Ladybird By Nicky Rushton Nicky created a song about her mother, who had dementia. Title: Jopie By Jacqueline Fleskens Jacqueline created a song for one of the residents in the care home Czar Peterpunt in Amsterdam, which was based on what Jopie had told her about herself during the musical sessions in the care home.
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Film title: The Cruel Sea By Kate Sweeney and Claire Ford with the residents of the Princess House Residential Home in Sunderland. They created a story about the sea, and on the basis of a recording, a resident read it back poetically which evoked the inspired comments of other participants. https://vimeo.com/124503277
Graphic design Deimion van der Sloot www.peim.nl
References 1. Bishop C: The social turn: collaboration and its discontent. ArtForum 2006, 44(6):178-183. 2. Kester GH: Conversation pieces: community and communication in modern art. Berkeley: University of California Press; 2004. 3. De Bruyne P, Gielen P: Community Art: the Politics of Trespassing. Amsterdam: Valiz; 2011. 4. Colombo F, Llena-Nozal F, Mercier J, Tjadens F: Help Wanted? Providing and
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Paying for Long-Term Care. In. OECD Health Policy Studies: OECD Publishing; 2011. 5. WHO: The global burden of disease. 2004. In. WHO 2008 update: http://www.who.int/ healthinfo/global_burden_disease/2004_ report_update/en/index.html. 6. Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW et al: How should we define health? Bmj 2011, 343:d4163. 7. The global impact of dementia: an analysis
of prevalence, incidence, cost and trends. In: World Alzheimer Report 2015. vol. http://www.alz.co.u/worldreport2015 Alzheimers Disease International. 8. European Parliament: Call to act on Alzheimer’s Disease. In. retrieved from: http://www.europarl.europa.eu 2011. 9. Knapp M, Prince M: Dementia UK- A report into the prevalence and cost of dementia prepared at the Personal Social Services Research Unit PSSRU at the London School of Economics and the Institute of Psychiatry
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of Kings College London, for the Alzheimer’s Society. In. London: The Alzheimer’s Society; 2007. 10. Morris D: Culture and Pain. Berkeley, CA: University of California Press; 1999. 11. Fontana A, Smith RW: Alzheimer disease victims: The unbecoming of self and the normalisation of competence. Sociological Perspectives 1989, 32:35-46. 12. Kitwood T: Dementia Reconsidered: The Person Comes First. Buckingham: The Open University Press; 1997.
13. Badham M: Legitimation: the case for socially engaged arts - Navigating art history, cultural development and arts funding narratives. . Local-Global: Identity, Security, Community, 2010, 7:84-99. 14. White M: Arts development in community health: a social tonic. Oxford: Radcliff; 2009. 15. Trienekens S, Hillaert W: Manifest voor participatieve kunstpraktijken. In., vol. Accessed 9 January 2016.: http://www.cal-xl. nl/nieuws/manifest-voor-participatieve-kunstpraktijken/; 2015.
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16. Sinner A, Leggo C, Irwin R, Gouzouasis P, Grauer K: Arts-based education research dissertations: Reviewing the practices of new scholars . Canadian Journal of Education 2006, 29(4):1223-1270. 17. Sonke J, Rollins J, Brandman R, Graham-Pole J: The state of the arts in health care in the United States. Arts & Health: An International Journal for Research, Policy and Practice 2009, 1(2):107-135. 18. Lally E: “The power to heal us with a smile
and a song”: Senior well-being, music-based participatory arts and the value of qualitative evidence. Journal of arts & Communities 2009, 1(1):25-44.
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