pre-publication - Hair and Care project

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I always have to keep my hair reasonably tidy. I mean it's probably .... website: “Hairdressing, image and body .... Retired builder Tom still had his old work jeans ...
Appearance matters: it’s integral to our sense of self Sarah Campbell, Christina Buse, Julia Twigg, John Keady and Richard Ward introduce a new approach to life-story work in dementia care: multi-sensory appearance biographies. Sarah Campbell, University of Manchester; Christina E. Buse, University of Leeds; Julia Twigg University of Kent; John Keady University of Manchester and Richard Ward University of Stirling. ///////////// job titles please

*More information on these studies can be found on the ESRC website: “Hairdressing, image and body work in care services to older people” (ESRC: RES-06125-0484) and “Dementia and dress: embodiment, identity and personhood” (ESRC RES-062-233195). The ‘Multi-Sensory Appearance Biographies’ guidance will be made available online at: www.thehairandcareproje and via the Dementia and Dress study which can be accessed at: http://www.clothingandag

Acknowledgement We would like to thank Professor Jennifer Mason, The Morgan Centre, University of Manchester for her generous support and methodological expertise during this project.

I always have to keep my hair reasonably tidy. I mean it's probably me, I don't think you should go out unless you've got your hair in some sort of a… and it's just probably as I've been fetched up (Arnold, person living with dementia)

I felt right wearing a jacket and tie… If it had been absolutely sweltering, all right, we’d take your tie off that’s it and then jacket off but I just felt right. (Joe, person living with dementia)

ur life stories are much more than the narratives we tell, write down or digitalise – they are reflected in the way we move and speak, our habits and routines, our appearance and the everyday objects which are important to us. Here, we introduce the concept of ‘multi-sensory appearance biographies’ as a method for bringing an embodied dimension to life story work in dementia care. Multi-sensory appearance biographies have been developed through the collaborative work of two recently funded Economic and Social Research Council (ESRC) studies: ‘The Hair and Care Project’ and the ‘Dress and Dementia Study’*. Both studies found that appearance continued to matter in the lives of people living with dementia, and was integral to memories, identities and our own sense of self. However, there did not appear to be a coherent and accessible way of capturing such important information in everyday caring practice (Kindell et al 2014). There is an increasing recognition of the importance of life-story and biographical work in dementia care research, policy and practice, and it is suggested that knowing the person and their history contributes to the provision of person-centred care. This is grounded in the work of Tom Kitwood (1997) who challenged the view of dementia as the loss of the person and highlighted instead how positive social interactions can support personhood and wellbeing. However, although it is clear that life story work can contribute to person-centred care, it is often not integrated into everyday aspects of our embodied experience such as dressing, washing and bathing and the help we may receive with these activities in later life (McKeown et al 2010; Kindell et al 2014). Rarely do life stories engage with the meanings and insights that arise from a person’s multi-sensory and embodied experience of their world. So these meanings and insights still need to be integrated into our understanding of the lived experience of dementia and our models of care practice.


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Assistance with the management of personal appearance in dementia care has been largely overlooked by policy and tends to be subsumed into a broader range of personal care tasks in practice. Yet both the studies that we draw on here found that an understanding of appearance and its significance for individuals revealed insights into other complex aspects of identity, and could support positive care interactions. As part of our project we have been looking at the development of materials to support those involved in the creation of life stories, enabling them to incorporate a more sensory and bodily dimension to their work. The materials aim to facilitate deeper understandings about the value and importance of appearance-related work in dementia care, including new ways to record relevant information which are more easily integrated into everyday care practice. A multi-sensory appearance biography is an exploration of a person’s life-story focused on appearance, in which visual and sensory prompts such as clothing, jewellery, beauty products, or photographs can be used as elicitation methods to support story telling. Talk of appearance and the processes of managing it over the life course was used by both studies to evoke embodied and multi-sensory memories. For example the touch of fabrics, the smell of a perfume or shampoo, and images of styles from the past and how it felt to wear certain items of clothing all helped to create a more ‘full-bodied’ approach to life story work. We found that using family photograph albums can support a chronological approach to eliciting a life story, enabling participants to describe changes in appearance across their lives. Rummaging through wardrobes, handbags and make-up bags, or talking to people about the jewellery they are wearing, can also stimulate memories and act as a springboard for storytelling about the body and through the body as people re-enact certain practices, gestures or postures. Daily appearance routines and rituals were also used both as a discussion point and a context for discussion, for instance, through chatting to residents during morning routines, or trips to the hairdresser or barber, or even while shopping for clothes. These more tactile and embodied methods enabled people living with dementia to get closer to their sensory experiences and to describe their life stories in more evocative and embodied ways. Asking questions

Doing appearance biographies

about these aspects of appearance also revealed insights into aspects of a person’s identity, relationships and values. The idea was to explore meanings behind choices and preferences and to allow space for stories to be told and enacted. For our research, people with dementia often participated in the appearance biographies alongside family members and care staff, particularly those staff involved in creating life story work. These biographies can be created in more than one session, depending on the individual and circumstances. Sometimes they might be done during other tasks and activities; workers might do it without even realising. For example, noticing that someone prefers to wear a particular colour of clothing could become a prompt to ask further questions about this either to the person themselves or their family carer. It is important to recognise that these values of listening and observing are often already a major aspect of the work undertaken by practitioners in these settings, and it is through this kind of attunement that our life stories are revealed. Appearance biographies can be made during any activity in the care setting where there is an opportunity to find out more about a person, and how they like to be supported to maintain their appearance. Staff can take opportunities to ask questions about a particular item of clothing, what it feels comfortable to wear or about routines that they have always undertaken. Information can also be gathered as part of a person’s assessment, when they are admitted to a home or hospital, by including appearance-related questions on forms that are already completed by the individual or by family carers. When exploring appearance biographies it is important to consider how information is recorded and shared in an organisation and where it is kept. A life story book that can only be accessed by a key worker, or in the main office, doesn’t really help the care worker on morning duties. Are storyboards kept in a resident’s bedroom more helpful, or a notice inside the wardrobe saying what clothing is preferred? Would it be helpful to have a regular focus in handover meetings about morning routines and appearance? These are just some of the questions we hope to explore as the next stage of our research is developed. We will now consider four aspects of appearance biographies in more detail and how they can be integrated in dementia care: appearance signatures, routines and rituals; telling stories through everyday objects; appearance and social interactions – sharing stories; and balancing continuity with change. Many participants told stories about particular aspects of their appearance that were significant or important to their sense of self, which we have called ‘appearance signatures’. Appearance signatures often connected people to others and to particular times in their lives. More often than not, they had evolved over a long period of time and were sometimes linked to particular events. In some instances it would be obvious from looking at someone what their appearance signature was. For instance, Charlie always wore a white cap and he said: “It was just

Appearance signatures, routines and rituals

something that was on the spot wasn’t it…They used to call me Charlie White Cap”. This was clearly a long-standing appearance signature for which Charlie was known and which made him distinctive. Participants often described something that either stood out about them with regard to their appearance, or helped them to ‘feel like themselves’. An example was Vic, who said that without a tie he felt “undressed”. His appearance signature involved a passionate commitment to always being smart, something that had been instilled in him from a young age. He had grown up in a time when men were expected to wear ties as a sign of respectability and his wife Judith told us he had even worn a tie on the beach when on holiday. Sometimes appearance signatures were much more private and personalised – Lily had a thyroid problem when she was younger and as a result had lost her eyebrows. She said that now she wouldn’t leave the house without “doing her eyebrows”, and felt half-dressed without them. The ritual of drawing on her eyebrows was something that completed her public self, the face that she was happy to show to the world. Our discussions with care workers and nursing staff in dementia care revealed that it can be difficult to help people express their individuality through appearance in care settings because often little if any information is collected to tell staff about these kinds of preferences. Staff frequently have to look for clues and make guesses about what someone’s preferences

Trying on garments can trigger memories – hats are a particular favourite. The photo above, showing residents and staff of Wisteria House, Plymouth, comes from Loving: the essence of being a butterfly in dementia care, by Sally Knocker (see p23)

Case study: Marie’s handbag Marie loves her handbag, and is never without it on her arm in the care home. It contains items connected with her personal history and identity, which provide a “prop” for telling stories about her life. They include: • A hairdressing kit - Marie used to be a hairdresser, and says she carries this ‘because I’m a hairdresser so I carry that and all my hairdresser kit’ • A locket displaying photographs of her parents. • An army cap badge which she described as a “Star of India”, belonging to her uncle. • A pair of ballet slippers, reflecting her enjoyment of dancing, and her earlier participation in ballet and amateur theatre.

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Multi-sensory appearance biographies – key points • Appearance isn’t just skin deep – and recognising its value is an integral part of supporting identity, and delivering person-centred care. • The management of appearance can be a focus for more positive care interactions, a talking point, and a prompt for giving compliments. • It is important to gather information about “appearance signatures”: routines and rituals that can inform care practice. Everyday routines might be made easier by attending to the order in which a person is used to getting ready and using familiar products and smells. • It is important to consider more creative approaches to storing biographical information: story boards; displays of objects and photographs in residents’ bedrooms. Everyday objects can be part of telling personal stories. Pockets and handbags can be used as a form of portable ‘memory box’. Sharing knowledge between staff is important so that information can be integrated into everyday care practices. • Clothing, make-up and beauty products can be used as part of reminiscence and sensory activities, evoking memories through their smell, feel, and textures. • Multi-sensory appearance biographies can bring an important embodied dimension to life-story work and enhance everyday care tasks.

might be. When we once asked staff how they knew whether someone had a wet shave or used an electric razor, they said they would “take the clue from what they had with them” when they arrived in hospital or the care home. Similarly staff would only know what products were used by what people had with them, so if someone had a moisturiser then it would be used, but otherwise not. Caring for larger numbers of people can make it hard to help individuals maintain all their previous routines. However, considering familiar routines as part of person-centred care can make morning tasks less stressful. An important reason for this, our research suggested, is that people can maintain a sense of self and continuity in their lives if they are supported to undertake the same routines and practices as they have always carried out. The appearance biographies showed that a crucial aspect to simply being ourselves is based on how we feel and how we carry out regular activities in the course of our everyday lives. In other words, it is the ‘doing’ of appearance that is as important, if not more so, than the way we look. Considering information about individual appearance routines would benefit all care staff as a way to help people settle into new surroundings. We found that in care homes and hospitals the little things that we take for granted when caring for our own appearance at home were sometimes overlooked. There were often few opportunities to consider routines and rituals - particularly around the ordering of a person’s day - which could be very important in terms of maintaining familiarity and security. One family carer told us about her Sunday ritual, where she would spend time with her mum helping her to have a more indulgent shower with hair wash, and exfoliate. They would both take pleasure in this longer, pampering part of their weekly routine: 22 The Journal of Dementia Care

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Mum absolutely used to love getting in the bath… I know she always liked Radox so I’d use that if she was going in the bath … she used to like the bubbles, she loved bubbles. So I used to make sure there were a lot of bubbles for her…

Most people have an appearance routine and more attention needs to be given to this in care. Appearance biographies enable this kind of information to be captured.

The everyday things that people bring with them into care can also provide clues about the person, their life story, and what is important to them. Talking to people about their clothes, accessories, or favourite beauty products can be a novel and unthreatening way to find out about them. Participants in both studies had retained certain items of clothing because they stimulated memories of cherished moments, even if the item of clothing itself was old and no longer of practical use. Retired builder Tom still had his old work jeans and shirts, marked with plaster and holes, and his wife said that he liked to wear them when “pottering about in the garage and things...he just likes to feel he’s at work I think”. Women often kept outfits bought for special occasions like weddings and anniversaries, or the clothes they made themselves, and often took pride in telling stories about the work and skills that had gone into producing them. Moving into a care home can mean downsizing and reducing clothing and possessions. In this context, the small aspects of dress and appearance – jewellery, watches, handbags, glasses and wallets – can become more significant. Asking participants about their jewellery or watch would often reveal information about their life story, identity and relationships. One participant, Harry, always wore a gold wrist chain which had belonged to his late wife, and was connected to memories of her. Valerie had a ring which her mother had bought for her twenty-first birthday, and she never took it off. She said: “If I lose that I think that will be it!” Handbags were also significant for women with dementia – many women who participated in our studies always had their handbag with them. We found that carrying a handbag can give a sense of security and reassurance within care settings. Handbags contain items which provide a resource throughout the day – lipstick, magazines, knitting – but also things which tell us about life stories, and trigger memories. For men with dementia, pockets could take on a similar role to handbags, storing significant objects, and keeping them close to hand throughout the day. Therefore it is important to know about the “little things” people bring into the care setting, why they are significant, and to provide support in maintaining them. Handbags, wallets and pockets can act as portable memory boxes, helping to maintain connections to different aspects of a person’s identity.

Telling stories through everyday objects

Appearance and social interactions – sharing stories

Appearance biographies can be a focus for positive care interactions, using appearance as a basis for telling stories, a point for discussion, or sharing

compliments. We observed residents with dementia complimenting each other’s appearance and clothing, remarking: “I like your dress” or “I like that colour”. Some care staff made a point of joining in with this and reported that residents would brighten up or “grow an inch” on receiving a compliment. They described this as a way of supporting identity and boosting confidence. Hairdressing salons could also be a space for positive social interactions, where a certain type of banter took place, evoking certain rhythms and sounds of laughter. The hairdresser is someone to tell stories to, to let off steam with, someone that residents with dementia could talk with about how they were feeling, and who had the time to listen. Many hairdressers had spent years working in the same care facilities and provided a sense of continuity and familiarity. Even if the person with dementia couldn’t remember the hairdresser, the hairdresser could remember them, and would often draw on this prior knowledge to prompt discussion. Appearance can also be a tool for reminiscence groups and sensory activities, triggering shared memories. During reminiscence used for one of the projects, the feel of the garments evoked memories as they were passed round; women enjoyed touching the silk seamed stockings, remembering their “fineness” and “silky feel”. They prompted shared memories of dressing up for dances during the 1950s, or the shortage of stockings during the war. Trying on garments could also trigger memories – hats were a particular favourite, as one woman said when she tried one on: “I remember the feel of them.” People who had advanced dementia would still respond to the tactility of fabrics like silk and velvet; as one worker said: “They might not know what colour it is ... but it’s the feel of it.” Sharing memories in this way can help care staff to see the person before the dementia. Staff and residents shared similar experiences of dressing up for nights out, wearing bathing suits on holiday, and youthful rebellion through appearance. Following reminiscence sessions, staff talked about how they had “learned something new” about residents, or saw them in a different light.

While appearance biographies can make connections to the past, it is also important to recognise how appearance and identities change. Participants described changes in their appearance throughout their lives, relating to changing fashions, life-styles, and changing bodies. In later life for example, clothing was often adapted to more general changes associated with the ageing body: flatter, more “comfortable” shoes; higher necklines; trousers rather than skirts. Therefore, in doing appearance biographies, it is important to explore change as well as continuity, and more recent photographs may be useful in understanding the person’s current dress style. Dementia can sometimes result in specific changes to appearance, such as weight fluctuation, difficulties maintaining appearance, or unexpected clothing choices. Difficulties with zips and buttons and continence issues can lead to families and care workers making adaptations to dress, for example, garments with elasticated waists, jogging bottoms rather than fly-fronted trousers, clothes which are easier to launder or stretchy fabrics which make assistance with dressing easier. These adaptations of dress can present dilemmas for families and care workers – do they make life easier and more comfortable for the person, or undermine their identity and the person they were? In the advanced stages of dementia, the person’s wishes can become difficult to interpret. Family carers may not wish to see their relatives wearing clothes that they would not have worn in the past, but then clothing that makes the difficult process of dressing and personal care easier has merit. There is a balancing act between maintaining identity and enabling care to be carried out without distress. Decisions need to take into account who the person was, but also who they are today. Based on the findings of our research, our recommendation is that such questions and dilemmas should be discussed more openly and with opportunities for care workers to reflect on how they manage this aspect of their work. All too often these sorts of everyday ethical dilemmas remain hidden in dementia care.

Balancing continuity with change

References ESRC: RES-061-250484. Hairdressing, image and body work in care services to older people. ESRC RES-062-23-3195. Dementia and dress: embodiment, identity and personhood. Kindell J, Burrow S, Wilkinson R, Keady JD (2014) Life story resources in dementia care: a review. Quality in Ageing and Older Adults 15(3) 151161 Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press. McKeown J, Clarke A, Ingleton C, Ryan T, Repper J (2010) The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing 5 148-158.

House ad (‘Loving’ book)

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