Clothing the Clown: Creative Dressing in a Day-center for People with Dementia in the Netherlands

ABSTRACT

Creatief met clowns is a creative and art-based workshop for people living with dementia that invites participants to join in a collaborative process of creating an outfit and clothing a clown. In this article, I look at what happened in workshop sessions and how this mattered to those involved, including what participants with dementia valued about the activity — by listening to what they had to say, but also by attending to their performative, creative and affective ways of engaging in Creatief met Clowns. To further articulate values that came up in practice, I analyzed my findings in terms of the quality of psychosocial relations, the role of embodiment, material aspects, and playfulness in person-centered care. By combining an ethnographic study of art-based care-practice with a value-sensitive theoretical reflection on empirical findings, my approach offers an alternative to problematic efforts to quantify the value of art in person-centered dementia care.

KEYWORDS:

• Netherlands
• art and creativity
• dementia
• elder-clowning
• embodiment
• evaluation

In May 2019, the healthcare clowning foundation VisiteClowns began a pilot at the day-activity center at E., a residential care-home in the Netherlands. Once a week someone playing the role of “dressmaker” welcomed 12–15 participants to a workshop called Creatief met Clowns. Most participants were physically frail older people, living with mild to more advanced dementia, and all regular visitors of the day-activity center. The dressmaker (a role performed in turn by two players of VisiteClowns) introduced a special guest to them – a clown without a costume, familiar by her red nose, but otherwise dressed in long white underwear. Participants and dressmaker worked out together what this clown was going to look like. They dressed their guest making use of assorted clothing, shawls, shoes and accessories displayed in the day-activity center turned dressing room. After five sessions of one-and-a-half hours each, with the same group of participants and a new clown every week, the series came to a festive finale in the form of a catwalk.

VisiteClowns adapted the idea for their pilot from the French foundation Vivre aux éclats and its project Créateurs et Créatures (Magnolfi 2016). The initiative fits changing ways of thinking about (living with) dementia in academia and society (Griffin 2012). The past decades have seen a shift toward person-centered forms of dementia care. Amending the dominant neuropsychiatric view of dementia and its focus on cognitive decline, alternative models center on peoples’ lived experience of dementia in relation to the quality of their social and physical environs (Kitwood and Benson 1995).

As part of this wider movement, there has been growing interest in and acceptance of the benefits of creative and art-based activities – such as visual arts, poetry, dance, and music – for vulnerable older people (Camic et al. 2018; Hamilton et al. 2003). Among these activities is elder-clowning, an art-based care-practice working with older people with cognitive vulnerabilities such as dementia, with a focus on sensory-emotional exchange, reciprocal play and joined imagination (Hendriks 2012; Kontos et al. 2017). Art-based activities supposedly bypass cognitive losses by capitalizing on embodied, imaginative, aesthetic and social capabilities that dementia leaves relatively unaffected (Basting 2009; Graham et al. 2013; Kontos 2003). At the same time, there is ongoing debate about how to assess their value (Beard 2011; Curtis et al. 2018; de Medeiros and Basting 2013; Zeilig et al. 2014). To meet the complexities of evaluating arts in dementia care, sophisticated assessment-methods are being called for (e.g. Gray et al. 2018).

At a crossroads of artistic and creative approaches in a changing societal and care environment, Creatief met clowns thus finds itself surrounded by debates on the value of creative and art-based activities and how to assess them. A brief summary of these debates will set the stage for my enquiry below into what we can learn from this case about evaluating art-based projects in dementia care more generally.

To address the problem of evaluating art in dementia care, I propose we first look at what happens in practice and how this matters to people on the ground. In order to do so for Creatief met clowns, I present findings from ethnographic fieldwork at E., contained in my empirical field notes that arose from “generative hanging out” (Pols and Krause this issue). Yet, to further articulate values that came up in practice, I also analyzed my findings against a background of theoretical debates about, respectively, the quality of relations, embodiment, materiality and playfulness in person-centered dementia care. I derived these perspectives from the existing literature on elder-clowning and other art-based practices, as well as on dress and appearance in person-centered care, and I combined these to suit the unique characteristics of Creatief met clowns. I argue that an analytically layered and value-centered display of empirical detail, as exemplified here, offers an alternative to problematic efforts to quantify the value of art in dementia care.

Evaluating arts and dementia

Qualitative studies suggest that art-based activities offered in person-centered dementia care benefit people’s subjective well-being, their quality of life, and social interactions (Baines 2007; Beard 2011; Curtis et al. 2018; Zeilig et al. 2014). Art-based projects are especially appreciated for their “transformative potential” (Belfiore and Bennett 2008; Ziarek 2004); in the face of dominant (institutional, discursive) powers, engagement in the arts can offer meaningful, emotional and liberating experiences to patients and families: they can raise people’s self-esteem, change their experience of living with dementia, and offer them a temporary escape from their patient role (Beard 2011; Curtis et al. 2018; de Medeiros and Basting 2013). Beyond personal meaning, empowerment and enrichment, art-based projects have been demonstrated to challenge stigmatization and further the social inclusion of people with dementia as citizens (Basting 2009; Dupuis et al. 2016).

Much research into the arts and dementia, however, stays close to a clinical perspective that focuses less on a person’s lived experience of dementia than on the condition and its treatment as a disease (Beard 2011; Curtis et al. 2018; de Medeiros and Basting 2013; Zeilig et al. 2014). This strand of research considers art as an alternative for or support of conventional pharmaceutical and behavioral treatment; that is, a therapeutic tool to reduce and manage symptoms of dementia. Outcome-variables that are considered clinically relevant comprise, for example, agitation, aggression, and wandering behavior; loss of memory and attention span; and negative moods and affects (such as depression and anxiety).

These diverging views on what constitutes “evidence of value” reflect broader differences within arts and health research (cf. Raw et al. 2012:98), including specific concerns about the field. Authors who consider art primarily as an instrument to produce measurable therapeutic outcomes, work in a tradition of evidence-based health-impact research. They argue that despite promising results, much existing arts and dementia research lacks methodological quality. Alleged flaws range from inadequate sample sizes, controls and randomization, to a failure to control for potential confounding and other forms of bias, while information on the validity and reliability of tests, experimental procedures, outcome-variables and measurement-tools is often found to be imprecise or missing (Beard 2011; Gray et al. 2018; Zeilig et al. 2014). More robust (quantitative) research is partly seen as a way to secure political support and funding (e.g. Hamilton et al. 2003).

Troubled by increasing pressure on the field in times of evidence-based policies and scarce resources (Belfiore and Bennett 2008; Raw et al. 2012), qualitative researchers take issue with such an evidence-based approach. Kate de Medeiros and Basting (2013), for instance, argue that the arts in dementia care aim at subtle effects and experiences that quantitative studies fail to register (2013:352). Engaging in (often small-scale) art-based activities offers people with dementia a single way to “accomplish something meaningful” (2013:351). Because people are all different, “levels of meaning may differ in intensity, duration, form of expression, and in other ways that are deeply personal” (2013:351). Outcomes therefore resist generalization. Evidence-based research also has difficulty treating social relations, organizational structures, and physical space as intrinsic to art-based practice and evaluation rather than as complications to experimental control (Gray et al. 2018). As Hannah Zeilig et al. (2014) conclude, the “emphasis of the arts is on experience, feeling, imagination, and meanings that lie to the side of our vision, meanings that may be masked and cannot easily be measured” (2014:26).

From these debates I conclude that a narrow, clinical view on the use of art as a form of treatment can easily become counterproductive in dementia care. For many people living with dementia, fighting symptoms is an uphill battle. Rather than always confronting patients with loss and failure, person-centered care builds on shared psychosocial needs and supports individual people’s capabilities to flourish as a person. As part of a person-centered approach, Zeilig et al. (2014) argue, art may “be more powerful for those living with dementia than anything medicine has to offer” (2014:26).

But how to evaluate this potential? A focus on the measurable impacts of art, on alleviating and managing symptoms of dementia in particular, ignores what is core to person-centered care. Participants in art-based activities may sometimes experience small successes, sometimes they may not. But the idea of establishing a quantitative causal relation here is obviously absurd – engaging in the arts is not like administering or receiving a “dose of Donezepil” (de Medeiros and Basting 2013); its outcome cannot be accurately predicted or converted to a numerical scale. In fact, flourishing as a person has little to do with health outcomes as such: people with dementia can (be supported to) thrive as persons despite cognitive and other impairments targeted by medicine (Kitwood 1997).

Critics of health-impact research thus offer convincing arguments on what evaluating arts and dementia should not be about. However, it is less clear what a person-centered, qualitative evaluation of art-based dementia care should look like, and especially how to move beyond the idea that the value of art-based work is purely individual and escapes any effort of registering and conceptualization.

The contours of a possible alternative become clearer when we consider three challenges to the field. First, authors signal a need for detailed empirical studies to help better understand what art-based practices comprise, how they work, and who they involve (Raw et al. 2012; de Medeiros and Basting 2013). Second, the field should develop models that are sensitive and respectful to how people with dementia themselves experience engagement with the arts (Beard 2011; Gray et al. 2018; Zeilig et al. 2014). Finally, the field should expand its conceptual basis to further an interdisciplinary understanding of arts and dementia practice (Raw et al. 2012) and articulate normative assumptions implicit in researchers’ acts of valuing (Gray et al. 2018:779).

Taking these points on board, I research the value of art-based activities in person-centered dementia care by combining an ethnographic study of art-based care-practice with a value-sensitive theoretical reflection on empirical findings. I exemplify my approach with my case-study of Creatief met clowns.

Methods

The ethnographic study on which this article is based centers on peoples’ lived experiences in relation to their socio-physical environs and the artistic process, rather than isolating a single beneficial factor. I respect the naturalistic setting in which Creatief met clowns took place and recognize the situated character of what it brought about. What role did various participants play? What tools and tactics did they use? How did the creative process evolve? What meanings emerged for people involved? What values came up in the field?

Whilst partly language-centered, the lived experiences of participants of Creatief met clowns were also realized and expressed in non-verbal, embodied, affective and material ways, none of which are easy to access. To get an inside perspective, I listened to what people had to say, but as an ethnographer who practices a form of “generative hanging out”, I also geared my senses to participants’ “silent” – creative, embodied, emotional – expressions (cf. Hirschauer 2006), which are especially valuable in a context of dementia care research (Hendriks et al. 2016).

During fieldwork, participants regularly drew me into the process to play a more active part, for instance by soliciting my assistance or colluding in teasing the clown. I was a participant-observer during four Creatief met clowns sessions and the finale (May–July 2019). Before and after, I helped prepare and tidy the set, and took part in evaluations.¹ In February 2019, I had joined a training by a team of Vivre aux éclats, organized as a kickoff for Creatief met clowns. I complemented my field notes with informal interviews with participants and their families, staff of the day-activity center, and the cast of VisiteClowns. I also drew on video-recordings and photos shot by an associate of VisiteClowns.

Four analytical perspectives – focusing on social relations, the role of the body, material aspects, and playfulness – served to further sensitize my research to what matters in the field; that is, they theoretically informed critical enquiry of the process of (partly implicit) valuing taking place in practice. Although they partly overlap, each perspective adds another analytical layer to help interpret my empirical findings and articulate the value of art-based projects in dementia care.

To ask permission for the research I contacted participants and their families by writing to the day-activity center. To permit inclusion of people whom, because of their cognitive impairment, do not satisfy standard requirements for informed consent, I followed a process-consent procedure (Dewing 2008): I always kept an eye on whether or not participants agreed with my presence as a researcher, and withdrew in case of a lack of agreement.² To protect people’s privacy I used pseudonyms; except for the cast from VisiteClowns who kept their character’s and clown’s names. (For an overview of participants and roles per session, see Table 1).

Table 1. Participants in Creatief met clowns sessions and catwalk.

Date	Dressmakers	Clowns	Participants workshop (pseudonyms) in order of appearance.	Other participants, observers, guests
22 May 2019	Mr Max	Carolientje Stippel	Mr Keith Mrs Ann Mrs Dory Mrs Trish Mrs Iris Mrs Gilian Mrs Celia Mr Jan and 4–7 unspecified other participating visitors of the day- activity center.	Jamie van Dijk and 1–2 unspecified other members day-activities team. Players of Mr Max/Mrs Maatje (alternating) and 1–2 unspecified other collaborators VisiteClowns
29 May	Mrs Maatje	Roosje Haring
5 June	Mr Max	Prins Ranja
19 June	Mr Max	Wimple
26 June	Mrs Maatje	Graske
3 July (Catwalk)	Mrs Maatje & Mr Max (duo-presentation)	Carolientje, Roosje, Ranja, Wimple, Graske		Team-members day-activity center Employees of residential home Invited family/friends of participants Invitees VisiteClowns foundation

Beginning with a relational view on personhood, let me now present a first perspective and then describe what happened in Creatief met clowns and what this meant to people involved.

Becoming connected: Psychosocial relations

What does it mean to evaluate arts in dementia care in terms of a person-centered process? The prevailing image of dementia in the West is colored by a cognitivist bias in how we define ourselves as human, focusing on memory, free will, autonomy and language. This cognitivist predilection makes it difficult to keep seeing someone as a person who, because of dementia, gradually loses their cognitive capacities. Countering this impulse, Basting (2001) argues that people living with dementia differ from others only in degree; they still depend upon other people to support their (threatened) sense of self, like anyone else, yet more intensely. Someone with dementia may not know you anymore, for instance, but still deeply care about, enjoy and need your loving company (Taylor 2010).

This relational view of personhood goes back at Tom Kitwood’s model of dementia. Next to neurobiological causes, Kitwood (1997) established, the psychosocial environment strongly contributes to people’s lived experience and, indirectly, to the onset and course of dementia. Interacting with neuro-cognitive changes “inside,” negative responses from the “outside” may (further) undermine people’s personhood. Stigmatization and infantilizing are examples of the latter, causing damage as they emphasize people’s (cognitive) deficits and failures (1997:45–47). In contrast, supporting people in their own capacity to maintain an active and meaningful connection with their environs strengthens their sense of self and well-being. Such “positive person work,” including recognizing, playing and collaborating with people (1997:89–91), is at the basis of person-centered care.

Kitwood provides a descriptive register but positive person work (PPW) also offers criteria to evaluate how interpersonal relations evolve in actual practice.³ I saw how Creatief met clowns sought to avoid negative experiences; if someone felt that clowning is childish and wanted to leave, for example, players respected their wish. However, Creatief met clowns also actively supported people in their own efforts to sustain a meaningful relation with their lifeworld. What detailed forms did PPW take in practice?

First, the workshop took place in the familiar space of the day-activity center and the players and day-care staff carefully considered whom was best seated where: What were people’s preferences in terms of whom they sat next to, where did they feel safe and comfortable? Sessions thus began by holding – providing people a safe psychological and physical space.

The next step in each of the sessions was one of recognition of participants as individuals with their own name and identity. Recognition took many forms, varying from polite to rather surprising, as my field notes suggest:

Mrs Maatje, the dressmaker: “What a surprise!” Mr Keith, one of the visitors of the day-activity center who took part in the workshop, looks up, stunned. Mrs Maatje, bright and shining: “Hi!” Mr Keith: “Who?” Mrs Maatje, promptly: “You!” Both begin to laugh.

Participants did not just undergo such acts of recognition. After a clown had been introduced to them as “special guest” or “surprise,” people asked and were informed about the clown’s credentials: What is his name? Is it a girl or a boy? Where is she from?

Creatief met clowns undertook dressing the clown in close collaboration between the dressmaker and participants. Teamwork during the workshops took many forms, ranging from giving advice to the dressmaker and helping the clown enter a suit, to more unconventional forms, such a Mr Keith’s private way of giving a hand to Mrs Maatje, the dressmaker:

“Keep up the good work,” Mr Keith says to Mrs Maatje: “Just improvise a bit.” “But could you also assist me?” the dressmaker asks. “If only you realize…,” says Mr Keith and gestures “My lips are sealed.” Later he carefully lays his two hands on the back of Mrs Maatje, as his way of supporting her to knot a tie for the clown.

During the process of joint creation people with dementia need support in a way that does not take over, but facilitates them in completing intended actions and gestures themselves. This need was met, for instance, when Mrs Maatje supported the hands of Mrs Ann so that she, with utter concentration, managed to stick on the clown’s lips. Creatief met clowns also involved negotiating, rather than presuming participants’ preferences and opinions, and responding to them. Stimulating immediate sensory experiences (“timalation”) also got attention, for instance when giving people a chance to discover how a texture feels.

A person-centered approach also obliges care for relaxation, by sometimes slowing down the pace and intensity of the activity. Although Creatief met clowns sessions were kept relatively brief (to meet participants’ limited span of attention), players took their time to introduce the clown and explain things. They had to get the clown ready, but also tried to build in moments of rest, allowing people time to process impressions. Players indicated they experienced a “great peace” when they succeeded in doing this.

Validation of people’s experiences – by, for example, praising and encouraging someone who is uncertain about their contribution – was central to the activity. But players also validated rather challenging expressions of rejection. One of the clowns, Roosje, for instance, cheerfully swapped position to side with one participant who rejected a clothing suggestion:

“I don’t like them, but it’s up to you,” a critical participant confronts Roosje, who had just tried on a pair of shoes. Roosje doesn’t waver a second and throws off her shoes: “I don’t like them either!”

The dressmaker Mr Max beautifully exemplified how to respect and validate a participant’s refusal to play along (saying “yes” to a “no”), thus also avoiding forcing someone into something against their will:

Mr Max explains the leading idea of the workshop to his participants. “The clown is still in his underpants. So we must dress him together, right?” “No,” Mrs Dory defies his searching look. “No … w,” I can see Max slowly digests the rejection, “no … .” “No!” he repeats, this time in a cheerful and affirmative voice. “No! We’re not going to dress him together.”

Finally, I also noted the importance of celebrating things as a joyful way of bringing people together. A good example is the festive finale, where participants, as the “stars of the evening,” presented their creations – five different clowns – to an audience of family and other invitees.

Being embodied: Sensory-emotional conversations

A person-centered perspective helps us reflect on how Creatief met clowns seeks to optimize the psychosocial environment of people who are trying to maintain a meaningful relation with their world. However, for a fuller grasp of the value of Creatief met clowns we need to move beyond the psychosocial, and add a view from the body to our evaluative toolbox.

Kitwood’s emphasis on how people give meaning to living with dementia, although critically complementing a neuro-cognitivist approach, still centers on human consciousness as an internal foothold from which people experience themselves and interpret their world. Such a focus on the human mind as seat of the self, as Kontos (2003) has critically argued, implies that “the body, as a potential source of agency, has not been incorporated into the discourse on the nature of the self and explorations of the subjective experience of Alzheimer’s disease” (2003:159). As a result, the “lived materiality of the body” is often “rendered silent and inconsequential” (2003:167). At best, the body in this view serves as an appendage of the self that resides elsewhere.

Kontos, building on Merleau-Ponty and Bourdieu, instead sees the body as “a fundamental source of selfhood that does not derive its agency from cognition” (Kontos 2005:559). Her concept of embodied selfhood firstly comprises the (phenomenological) pre-reflective body; as in when someone reaches for a piece of clothing without thinking. Secondly, it comprises physically engrained dispositions (“habitus”) acquired during early socialization and education, such as a certain style or taste. Recognition of the body’s potential raises awareness of the ongoing agency of people with dementia. For, whilst dementia seriously challenges people’s cognitive and linguistic capacities, Downs (2013) recapitulates, being embodied opens up alternative channels “to experience the world, express oneself, or to communicate with others” (2013:372).

One’s body – human territory par excellence for someone to experience their world and express themselves – also makes one vulnerable. To avoid exhaustion, the body as a precious source of meaning and continuity needs care and sustenance (Kontos and Martin 2013:294). This seems especially urgent for people with dementia, who increasingly depend on embodied relations with the world. Yet, while they depend more on it, their life often becomes dictated by institutional routines that put the embodied self at risk of neglect.

It is here that we should locate the elder-clown’s unique contribution to dementia care: countering disregard and “dehydration” of the self by supporting people to engage in sensory-emotional conversations with the world – “tackling indifference,” as I called it elsewhere (Hendriks 2012:459).

To what extent and how does Creatief met clowns revive embodied ways to connect with the world and others? What room does it create for participants to exert embodied agency? Rather than directly nourishing people’s bodily senses and rousing their emotions, Creatief met clowns takes a detour: the clown’s habitus shifts from an active to a responsive way of “receiving and resonating” with the world. Their unfinished state serves as an invitation for participants to fill the blanks. More than anybody’s, this clown’s body is work in progress.

Indeed, Creatief met clowns is all about “molding the clown-material” and to “gradually humanize” her, to borrow our instructor’s expression at the kickoff session. Many participants were glad to offer a hand, using their embodied capacities and sensitivities to sustain the clown’s body-self. For a start, they showed their emotional engagement, taking care of the clown’s delicate state as they worried she might choke.

The clown hops up and down. As a result, the hairband slips over her eyes, covering her nose and mouth. “It hangs too low,” Mrs Trish gives a warning: “This way she’ll get smothered!”

Participants’ comments also testified to enduring tastes:

The clown showing a dress asks whether people like it. “Yes, nice,” Mrs Iris says. A critical lady next to her: “Yeah, it may be nice, all right, but … ” She looks sceptical. Mrs Maatje interprets: “But it isn’t your taste.” The critical person settles it: “Exactly.”

They demonstrated embodied skill and familiarity with dressing. Mrs Gillian, for instance, made sure the clown looked nice and tidy, neatly folding the cuffs of her sleeves and carefully closing the links. Her two hands knew straight away how to handle this. Thus, I noted how the clown’s precarious state offered participants a chance, for the first time in maybe weeks, to affect and become affected, and thereby shore up their embodied self again.

Some visitors, however, needed more than an open invitation. Take Mrs Ann who, when left alone, showed little facial expression, her body difficult to read. Learning to attune to someone like her – to become sensitive and discover how to make a difference to her – is core to the art of elder-clowning.⁴ In the case of Mrs Ann, the dressmaker Max and the clown Wimple seemed to succeed quite well. To the attentive eyes and ears of Max, the slightest change in her eyes and words spoken softly indicated Mrs Ann’s nascent interest in what he and Wimple might have had on offer. Eventually, Max and Wimple’s play even raised a smile in her.

Wimple gets a massage that gives him tickles and makes him wiggle. Max has enough of it and orders him to “Sit down!” Sitting still the clown seeks contact again, waving at Mrs Celia and Ann. The two raise hands in response. I see Ann’s face light up brightly. She waves back.

Jamie van Dijk, head of the day-activity center and always present at the workshops, was moved by what she saw happen: “People were almost physically taken by the hand,” she explained. “Usually, it is very difficult to make contact with Mrs Ann. If you then see how she responds, that is just wonderful to see.”

Seeing Mrs Ann respond and wave back was wonderful, indeed. Clearly, Max and Wimple deserve credit for reaching her. Yet, I wish to suggest, it was Mrs Ann herself who guided Max and Wimple in how to approach her. If they learned how to affect Ann, it was because she, at the same time, taught them how to enrich their repertoire and attune to her. This is confirmed by Max, who felt that he could always refresh himself by turning to Mrs Ann as one of his “footholds” or Mr Keith for an “antagonistic voice.” What Jamie saw, then, was only the final layer of a reciprocal process in which anyone/body getting involved simultaneously gave and received, initiated and responded, affected another and became affected.⁵

Getting dressed: Material improvisations

Inspired by the concepts of relational and embodied selfhood, ethnographers have also been studying clothing and outer appearance in dementia care. The meaning of what people wear hinges on dress codes, among others reflecting gender and age expectations. Yet, as socially negotiated and lived experience, choosing and wearing clothes also enables people to express and present themselves. Clothes are part of the story we weave with and for others, as well as for ourselves, to symbolize who we are.

A material turn invites us to reflect on norms and values that clothes carry with them, by design or in the way they are worn. But artifacts also actively mediate human affairs. Extending Bennett’s (2010) analysis of “vibrant” edible matter to wearable matter, clothing can be seen as coactive with the body and mind of people wearing it.⁶ As Miller (2010) shows, clothing as the “main medium between our sense of our bodies and our sense of the external world” (2010:23), directly affects ways of behaving and being. By playing “an active part in constituting the particular experiences of the self” (2010:40), clothes give material shape to who we are. As much as we wear them, our clothes wear us (2010:23).

Twigg and Buse (2013) note, however, that the significance of clothing and appearance for people’s experience of living with dementia tends to be underrated. Instead of compensating for people’s loss of interest and skills in clothing practice and routines, clothing is another area at risk of neglect in institutional settings. A narrow focus on health, hygiene, and practicalities of care – including managing impressions by front-staging the lounge-standard resident (Lee-Treweek 1997) – may shift attention from personal wishes and values concerning clothing and appearance (Ward and Campbell 2013).

Attention for dress and appearance can nonetheless play a valuable role in person-centered care. As our “environment closest in” (Twigg 2010:4) material and sensory qualities of clothing – what is the feel of a fabric, what color pleases the eye – may strongly appeal to our body and offer recognition. In everyday care, respect for “what “feels right” on the body, and notions of comfort, as a “physical sensation” and “aesthetic fit” – “the wearing of clothes which are ‘you’”” (Woodward 2007:73, quoted in; Buse and Twigg 2018:346), offers opportunities for supporting people’s identity.

Broadening our evaluative scope beyond interpersonal and embodied relations, we thus need to consider the active part of artifacts. How does Creatief met clowns call upon the symbolic and material qualities of dress to make contact, engage people’s senses, and support the self?

Creatief met clowns clearly turns around what Richard Ward and Sarah Campbell called the “joined accomplishment of appearance” (2013:342), notably the clown’s, but also involving participant’s own clothing. As for the clown, her white underwear highlights her blank state: rather than having prepared her body for public performance, the clown making a barefoot entrance seems halfway between bed and bathroom.

Either responding to the unfinished state of the clown or encouraged by one of the costume-makers, most participants gladly contributed to making an outfit suiting the clown. They showed their interest in dress and appearance, built upon personal taste and experiences, and demonstrated an enduring feel for social norms and meanings of dress, all said to decline in dementia. Creatief met clowns supported these sensitivities by appealing to them, turning dressing into a kind of improvisation.

Aesthetic concerns became manifest, for instance, in choosing colors or pieces, and in judging whether a specific piece of garment befits a clown, or not.

Mrs Iris sees that Roosje’s collar needs straightening and her hands begin to smoothen it. “You really have an eye for this,” the dressmaker admires her. She actually prefers red, Mrs Iris says. Hmm, but does she also like this blue one, Mrs Maatje wonders. “It does suit you,” Mrs Iris eases things for Roosje. However, her eyes stay critical.

The same note shows that choosing and wearing clothing involves both conscious and embodied insight and skills: Mrs Iris’ knowhow partly resided in her hands and fingertips. Finally, the observation suggests that negotiating dress and appearance requires subtle social skills. Another example of this came from Mr Jan, who in sharing his thoughts about a piece of garment showed tact: “It’s more a matter of ‘hmm, well … ’” Both the polite formality expressed by Mrs Iris and Mr Jan’s mild irony, were discreet ways of keeping up appearances. Their tactful negotiations sharply contrasted with another participant’s blunt honesty, which caused general laughter: “A daft combination, stupid these boots on that summer dress!”

Creatief met clowns also involved practical choices on the right size and a dress being not too warm, which easily shifted into normative matters: What is appropriate, what is not done?

Mrs Celia notes that the clown’s underpants are “way too thick” – it’s a warm afternoon, indeed. “Take them off,” someone suggests. “Nooo! You really can’t do that,” Celia knows. The very idea makes her laugh.

To a limited extent Creatief met clowns also addressed participants’ own embodied relation with what they wear and how they wear it. Dressing-up offered participants room to break the rules and temporarily become someone else, as Mr. Jan experienced when he tried on a women’s skirt (though it did not gain his approval). In contrast, trying a dress confirmed Mrs Trish in her public performance of self:

“How would this dress be on you?’’ Mrs Trish is helped on her feet. “I’m fond of yellow,” she says and does not waver a second. Unsteady as she is, she needs firm support so that she can try on the dress and have a look. Her thrilled “Oeoehoooee!” signals a mix of anxiety and excited delight. Looking in the mirror, her gaze gains a theatrical air and she finds exactly the right pose for showing this festive, yellow dress.

Her stage presence said it all, yet suggested that she, and her dress, had more stories to tell. Next to their narrative drive, such events evoke “the sensuality of touch, color and flow” and the “tactile, emotional, intimate world of feelings” in which, writes Miller (2010:41), any ethnographic study of clothing must be immersed.

This brings us to the physical dimension of how clothes matter to us. This material aspect had a prominent place in the kickoff, when sensory qualities of dress were thoroughly explored. In Creatief met clowns practice, clowns too attuned to the feel of a piece of textile, as in when it was ticklish. Participants were sometimes invited to touch and feel the fabric. However, sensory qualities of clothing were mostly referred to by talking about them; by referring to a color, for example. Relatively little pause was given to tactile experiences of texture, the feel of a stiff or supple form, or scent of clothing.

Being playful: Imaginative creations

Creatief met clowns joins a wide range of approaches in dementia care that invite people to take active part in joint artistic and creative expression. By calling on people’s creativity and other capabilities, “lasting skills rather than deficits” as explained during the kickoff, Creatief met clowns seeks to empower people. A specific way to look at this, is by focusing on people’s capacity to play. Rather than relying on what people know – thus risking emphasizing their cognitive losses – playfulness in dementia care can be a source of meaning and joy for all (Killick 2013).

Swinnen and de Medeiros (2018) use play as a frame in their analysis of poetry and creative storytelling projects in dementia care. They build on the work of Johan Huizinga (1955), who conceptualized play as a basic human activity (homo ludens), offering a space temporarily set free from external goals and demands, with an intrinsic value. “Collaborative play in dementia care settings has no other goals than deriving meaning from being in the moment of a ‘true’ encounter with other human beings,” as Swinnen and de Medeiros (2018:268) have it. Play involves a shared space in which players trust to give up mutual distance and hierarchy, indeed “parties have to start from ‘equal’ ground and let go of the fears of being diminished or being laughed at” (2018:268). In the projects the authors studied, participants showed increasing confidence, attuned to their fellow players with humor and respect, and contributed to an atmosphere of joy, intimacy and trust.

In fantasy play in particular, as Ike Kamphof and I noted in our fieldwork for another project, participants showed a “remarkable flexible engagement with various worlds, real and fictive, serious and joyful” (Kamphof and Hendriks 2020:283). They knew how to attune to the shared space of play, their fellow players, and the flow of the performance (e.g. in how they handled a doll), regardless of dementia. Having room to move between real and imaginary worlds permitted people to articulate themselves in unexpected ways, and surprising new meanings to emerge and become shared in the process.

The assets of playfulness and imagination are also known from existing research on healthcare- and elder-clowning (e.g. Raviv 2013; Simonds and Warren 2004). Pia Kontos et al. (2017) observed reciprocal play in elder-clowning in the form of verbal wit as well as exaggerate, slapstick-like body language. Their fieldwork showed how people with dementia responded with joy, surprise and humor to clown-play initiatives. Yet, residents also began playful, creative and funny acts, improvised when picking-up a clown’s initiative, and liked to lay it on thick (2017:55–56). The study also looked at imagination as a way to connect with people for whom the boundaries of space, time and person become fluid. Instead of tying people to external reality, Kontos et al. observed how the elder-clown surrenders to the experienced reality of the other. Scenarios that normally seem nonsense make perfect sense in the jointly created imagined world of clown and participants (2017:56–58).⁷

Grounded in the tradition of elder-clowning, Creatief met clowns too capitalized on play as a source of creative energy. On site, the reciprocity of play came to the fore in setting the right material conditions for play, making sure all had a free view on the floor and room to maneuver, but also in creating an atmosphere of trust, so that the set indeed became a creative space for all.

Playful contributions in Creatief met clowns took both a verbal and embodied form. During sessions I took part in, participants joined in both. Like Mrs Celia, who joked she would try a shawl just to do Mrs Maatje a favor:

“Would someone try this shawl?’’ Mrs Celia: “If I can do you this favour.” Mrs Maatje: “Just to try, you know.” Celia: “Yes, rabbits are also trying!”

Or like Mr Jan, who was always willing to play along and triumphed when he put his foot on the flipper of the clown, disabling the latter to make another move:

Wimple walking with flippers acts like a seal, “oink oink…” He cannot pass Mr Jan who firmly puts his foot on the flipper and takes pride in his victory. An outburst of laughter when the clown tugs himself free.

Slapstick-like acts in Creatief met clowns sessions were a sheer pleasure to watch, as an audience attending a show, but they also allowed people to play along and initiate their own moves.

“I’ve an idea, a … naughty idea,” Max says. “Is that so,” Mrs Celia conspires with him. Max demonstrates his wicked idea. “Yes,” he approves the result, after having stuffed the clown in a too tight, yellow vest. The confident tone is suspect. “Maybe under her blouse?” someone tries. Max tows the vest down, dragging it over the clown’s hips. Celia: “That doesn’t look nice.” Mr Max orders the clown to get out of the vest.

When they took active part, people showed their ability to attune to the joined space for play, to others with whom they shared this space, and to the flow of events on the floor.

A few people played safe and kept (ironic) distance from events on the floor, for instance by suggesting a clown take off their nose. Yet, most were ready to participate as players, to make themselves equally as vulnerable as their fellow players. They thus joined in the joys and risks of play, dared to say or do things they normally would not, expressed themselves in surprising new ways, and derived pleasure from doing so together. Indeed, Jamie van Dijk, head of day-activities, over the course of these few weeks saw “people’s confidence grow tremendously.”

Creatief met clowns at its best was a space of shared imagination, inviting people to move jointly between worlds: factual and made-up, sincere and for fun – allowing new meanings to arise and participants to emerge in surprising ways. Thus, a clown’s character like Graske emerged from one of the sessions (Figure 1). Starting as a space of possibility she became dressed in a blocked white-green blouse and gradually acquired her persona and storyline: sitting in a green meadow, lazy on an afternoon picnic, wearing wooden shoes, joined by her little dog “Floris” – Graske’s name and a song (“Green is the grass underneath my feet”) added as final layers to the make-up of this clown.

Figure 1. Mrs Maatje and Graske, June 26, 2019.

Discussion and conclusion

What insights does Creatief met clowns offer for evaluating art-based projects in person-centered dementia care more generally? Rather than focusing on objectively measured therapeutic outcomes that dominate health-oriented research, yet equally eschewing the idea (dominant in qualitative research) that the value of art is a purely individual experience that escapes further scrutiny and evaluation, my study centered on situated, value-laden practices of people participating in Creatief met clowns. Some values became disclosed in the comments of participants and self-evaluations of the team. Other values were implied by their own and other participants’ ways of doing, attending and talking. Ethnographic immersion in specificities of what happens in situ was a prerequisite to discover what values practice embedded.⁸

Based on my fieldwork, I have then been drawing what one might call a story-map of the creative space traveled in Creatief met clowns. By “describing the landscape and events that took place in them,” as Robert MacFarlane writes, story-maps are “organized around the passage of the traveler, and their perimeters are the perimeters of the sight or experience of that traveler” (2007:141). Likewise in my explorations of Creatief met clowns, rather than imposing the “rigorous geometry” (2007:143) and the external normativity of a grid-map, I have drawn on my impressions of what matters on the ground.

Yet, while drawing, I also sought to include the experiences of other participants, including those of people with dementia on the map: by listening to what they had to say, but also by attending to their performative, creative and effective ways of engaging in Creatief met clowns. Four analytical perspectives have finally served to further sensitize myself to what matters in the field and to inform critical enquiry.

Changing the culture of dementia care is a slow and painstaking endeavor that includes changing how we look at the role of art-based interventions. A first but important step is to match the inventiveness of art-based care-practice with innovating arts and dementia research. Accordingly, my approach responds to calls to strengthen the qualitative field of arts and dementia research with empirical details, by including participants’ voices, and adding conceptual depth.

However, offering a viable alternative to evidence-based health-impact research will require more than further detailed and grounded qualitative knowledge of artful care-practice. Clearly, the privilege granted to evidence-based approaches to the use of arts for health, has a strong economic and political dimension. Indeed, these aspects are central in allocating scarce resources and they strongly influence institutional policies. A real change in arts and dementia research and policies therefore requires a more fundamental reflection on what public services, such as offering art-based care, are actually valued for (cf. Sen 2012). Complementing a quantitative approach to what services healthcare-insurances and institutions can afford, and to what effects, art-based approaches in person-centered care call for a broader debate on what vulnerable people need, and what we value for people with dementia in particular: a shield against social exclusion, a promise of meaningful engagement, and a culture of respect for the person.

What, then, more concretely now, does an analytically layered and value-centered display of empirical detail as exemplified here yield: for artists reflecting on their practice, for policymakers deciding about allocating limited funds, and researchers evaluating art-based activities in dementia care?

First, my analysis suggested that Creatief met clowns’ specific blend of performative and creative arts can play a vital role in person-centered care. Kitwood’s (1997) person-centered perspective served as an inventory but also suggests directions to improve the quality of social relations. Creatief met clowns might, for instance, focus more on people’s life-stories in relation to their personal clothing style, to further support people’s longstanding identity. By exploring empirically how people treat one another and critically reflecting (ethically) on how this affects human flourishing, a person-centered approach offers an alternative to evidence-based evaluation-studies of art-based activities on the one hand, and qualitative studies that refrain from moving beyond individual experience on the other. Instead of focusing on what divides people with dementia from their environs, Kitwood suggests how art-based activities can be seen as building on shared psychosocial needs and resources, and supporting people to flourish in active and meaningful relations with their world.

Secondly, we saw how Creatief met clowns supports people to engage in sensory-emotional conversations with their world. In this process, sensory and emotional capacities of the body served as a valuable resource but were also acquired, as participants nourished each other’s embodied selves. There were also concerns in this respect. Mrs Maatje felt that as dressmaker much of her energy “went into talking” to keep the participant-group engaged. The talking-mode left “less room for physical play, for mimics,” at the possible cost of intimate contact with participants who, because of their dementia, depend most on the body. Extending our scope to the body thus offers criteria for critical (self-) assessment. In the case of Creatief met clowns this lead to increased efforts to rekindle performative aspects of play. More in general, the fieldwork suggested that one’s body cannot be taken for granted, not even in art-based projects in dementia-care that rely on it. Embodied selfhood is the precarious and temporary result of a process of mutual articulation. Creating conditions for embodied selves to converse with their surroundings and to flourish, is a vital way art-based projects contribute to person-centered dementia care.

Next, we saw how conventional meanings and material layers of clothing became intertwined with participants’ stories. Extending our scope to the intricate role of wearable matter in social identity formation made room for (self-) evaluation. Creatief met clowns may be refined, for instance by diversifying and enriching their (largely nylon) collection in terms of tactile and other sensory qualities. This analytical view also offers insights to evaluate other projects interested in material forms of enriching people’s experiences (cf. Hendriks et al. 2018:36–39). First, rather than keeping people merely busy or diverted, a person-centered approach requires us to ask what makes an experience worthwhile to the other as a person. To find out for each individual one should avoid one-size-fits-all “experience packages” (e.g. dressing everyone in a nostalgic dress). Art-based projects are especially valued for creating opportunities for someone to experience something beautiful or to open up their senses to become surprised. Materials, textures and artistic forms should be interesting enough to enable this, also because you want people with dementia to experience things others can also find worthwhile. Lastly, what makes things matter to “us” is also grounded in a communal space and practice conducive to sharing experiences.

Play and imagination, finally, offered room to participants to escape their role of patient, connect with others, and appear as persons. Play as a perspective to capture the value of art-based dementia care invited critical (self-) evaluation. The team wondered, for instance, if they should offer participants more direction, e.g. by proposing the clown will be visiting a wedding. However, too much restraint may stifle the freedom and joy of joined creation and discovery. This perspective also offers insights to evaluate other art-projects reliant on play and imagination (cf. Kamphof and Hendriks 2020:280–285). Good play-practice is characterized by openness to meanings as not fully settled. Turned instrument to alleviate and manage disease symptoms, that is, to realize set clinical objectives, play loses its characteristic value of openness while widening the gap between therapist and patient. Participants engaged in true play instead give up their safe distance and share the fruits and risks of imagination with one another. By going along with what is possible and appropriate in the play-world, they preserve the value of the reality they jointly created. Such a person-centered practice of artful play/playful art generates rather than compromises values: the openness of play, aesthetic value, social and person-centered care-aims strengthen one another.

Experiences of meaningful engagement in art-based projects such as Creatief met clowns acquire their shape in situated encounters and relations. Such projects sometimes succeed in creating generous conditions in which persons can emerge and become present for each other. Such an articulation of personhood derives its value not so much from its visible success: core-values of art in care are not an external outcome but implicit to the participants’ lived experience and person-centered practice. We should also desist from attributing success or failure to a single factor, person or tactic in the assemblage. Projects such as Creatief met clowns are characterized by reciprocity: those involved simultaneously affect and become affected, take the initiative and are invited to follow, learn to make a difference and teach how to receive. Transformative potential cannot be pinned down. Generous conditions for people to flourish are found in the intricate details of art-and-dementia assemblages as a whole.

Acknowledgments

This article is based on a report (Hendriks, 2019) written for VisiteClowns. Previous drafts of the paper were presented, as part of a duo-presentation with Massimo Cavallini at the Healthcare Clowning International Meeting (The Hague, April 21, 2022), and at the Medical Anthropology and Sociology Winter School (University of Amsterdam, January 18, 2023). I wish to thank Rein de Wilde, Ike Kamphof, Tsjalling Swierstra, Jeannette Pols, and Ruth Benschop for their critical support. I am grateful to the wonderful people of VisiteClowns (as of 2022 Tiramisu foundation), Tante Zus&Zo, and the participants of Creatief met Clowns for offering me the opportunity to learn from their practice. This journey has begun many years ago; I am grateful to the late Jeanine de Graaf for introducing me to VisiteClowns.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

VisiteClowns foundation financially supported the fieldwork for this study.

Notes on contributors

Ruud Hendriks

Ruud Hendriks (Faculty of Arts and Social Sciences, Maastricht University) in his research focuses on art- and technique-based interventions in/representations of mental health care. Combining ethnographic work and philosophical reflection, he has published on elder-clowning, normative aspects of make-believe in dementia care, care robotics, and autism spectrum disorder. His current research (with Ike Kamphof) looks at imaginaries of nature in psychogeriatric care.

Notes

1. In-between and final evaluations (cf. VisiteClowns, 2019) were based on input of VisiteClowns players themselves, an observer from their team, day-activity center staff, and me (cf. Hendriks 2019).

2. This study is a spin-off of two previous projects funded by the Netherlands Organization for Health Research and Development (project nrs. 416020005, and 731010010 for which the Ethics Review Committee Inner City faculties of Maastricht University provided ethical approval).

3. For my analysis, I make use of the concise list of PPW in Kitwood (1998). Note that I cover play, as a core characteristic of PPW and elder-clowning, in a separate section.

4. Becoming an expressive elder-clown equals acquiring a sensitive body that, from experience, with ever more nuance, learns to distinguish between and respond to subtle differences in how the other is present in the world, attentively, physically, affectively (Hendriks 2012:469).

5. To account for these mutually produced affects we need to look into the creativity of making and keeping a body sensitive and communicative to the outside world (Hendriks 2012). One’s bodily self is acquired gradually as one/it learns to become moved and affected in interaction with other elements, not by itself (cf. Despret 2004; Latour 2004).

6. See Bennet’s (2010) argument about the active part of potato chips in the emergence of obesity as a public health issue. “To eat chips is to enter into an assemblage in which the human I is not necessarily the most decisive actor” (2010:40).

7. Together with sensory-emotional exchanges in elder-clowning (Hendriks 2012), reciprocal play and co-constructed imagination constitute what Kontos et al. (2017) call “relational presence” (2017:46), i.e., the reciprocal way that a clown and person with dementia are present for, and sustain each other’s presence.

8. See Sayer (2011): without “careful evaluative description” it is impossible to give an adequate account of social life for the kind of beings we are – i.e. “beings for whom things matter” (2011:10).