Working together, changing care

How to collaborate beyond the academy in research in dementia and culture? Working Together, a workshop organised by Sarah Falcus (University of Huddersfield) and Raquel Medina (Aston University) for the Dementia, Narrative and Culture Network, aimed to answer this question. Academics, healthcare professionals and service users came together in Senate House, London, on 23rd November 2018, to showcase budding partnerships, experiment with strategies for raising awareness, and share best practice. In essence, the workshop explored how the lives of people living with dementia and their carers could be changed – with and beyond the help of academic research.

Participants at the ‘Working Together’ workshop, Senate House, University of London (via Dementia and Culture Network @DemNarrCulture)

In the run up to this workshop I interviewed my project partner, Tony Britton from the Pam Britton Trust for Dementia in Warwickshire, about what he thought health humanities research should be working on (you can listen to the full interview following this link hosted on the Trust’s What’s New page). His key messages were: (i) to seek out, and listen to, the views of patients and their carers; (ii) to expose more fully the real issues surrounding dementia care today; and (iii) to identify how people’s perception of the illness can be changed. The initiatives presented at this workshop did just that.

Changing the perception of the illness comes from sharing the experiences of people living with dementia and their carers. This is what ‘Time for dementia’ aims to do. The collaborative project between researchers Stephanie Daley and Yvonne Feeney from the Brighton and Sussex Medical School and the Alzheimer’s Society provides an educational programme for first year nursing and paramedic students at the University of Surrey as well as second year medical students at Brighton and Sussex Medical School. The training is ‘designed to create a new generation of healthcare professionals who are more aware and understanding of dementia’. Students engage with families who look after a loved one living with dementia, appreciating the difficulties as well as rewards of caring. Harnessing principles of relational learning, this project can expose core issues related to dementia care, while challenging preconceptions held about people with the condition. It has the potential to enhance dementia practice in a healthcare environment that continues to privilege the knowledge held by health and social care practitioners.

Working with families and carers in educational projects draws attention to the importance of knowledge held by service users. Nonetheless, the presence of the caregiver already suggests a relationship of dependence and passivity – both concepts looming large in the narratives circulating about dementia in the mainstream. Projects removed from the caregiver can challenge these notions more effectively. They enhance appreciation of patients’ continued agency and desire for engagement beyond their capabilities to recall or convey thought in language – notions the patient turned activist Christine Bryden recently challenged very eloquently in her manifesto Will I Still Be Me? (Jessica Kingsley, 2018).

David Robinson, Head of Music Services at Nordoff Robins, introduced music therapy as guided by the principle that music making establishes shared control between two musicians. From this angle, music therapy substitutes the patient for the musician. It provides scaffolding that functions outside the verbally articulated narrative. It shifts attention from dependence to interaction. Two recordings showed music therapy at work, tracing how the patient’s continued awareness and engagement light up with music making. My choice of verb appears to suggest that the onlooker perceives of this change as a reawakening in the patient of a sense of self. And in fact, the enthusiastic reception by the workshop audience of these short clips perhaps revealed how deeply seated images and concepts held about dementia are – the educational power of such clips reaching, and being essential, far beyond the classroom.

Also Arts 4 Dementia puts people living with the condition at the heart of its activities, albeit at an earlier stage of their illness. Veronica Franklin Gould, President and Head of Research at Arts 4 Dementia, enthused about arts interventions to re-energise people above early symptoms. Her presentation was peppered with case studies revolving around individuals with dementia who find joy in life again. The programmes framed by Arts 4 Dementia bring people with dementia into stimulating environments, like art galleries and other places of outstanding beauty. They facilitate patients’ continued active engagement and help attenuate what is termed challenging behaviour.

All these approaches have in common that they work against what Andrea Capstick from the Centre for Applied Dementia Studies at the University of Bradford in her keynote termed the mainstream narratives told about dementia. They work against the prescriptive powers of metaphorical concepts like dependence and passivity. They release people living with dementia from the confines produced by these narratives. They see gain, wisdom, continuity and wellbeing where mainstream ideas identify decline and loss. They aim to shift how dementia and people living with dementia are conceptualised in culture and society at large. Is the role of the academy then to capture these shifts, with a view to prescribe change for how ageing and illness in ageing is perceived; and to make this prescription a classroom tool from the earliest days?

Gerard Steen and Giulia Frezza from the Metaphor Lab in Amsterdam seek out the conceptual frameworks established by dementia related metaphors. In an activity based session they drew attention to the risk and responsibility that come with our choice of language. By listening to the patient and analysing their vocabulary, they devised, I would say, an approach that pins down the iatrogenic effects of certain images and suggests ways that may write the patient back to life. For example, how well can the concept of the battle support the patient’s continued agency when wider societal and cultural discourse perceives of the person with dementia as terminally ill; how can, by comparison, the image of the broken vase support wellbeing if perceived of as still beautiful although it can no longer be filled. What mechanisms, Steen and Frezza explored, are at play when we resist metaphors; when we employ language so far unheard of in the mainstream?

But, I wonder, how can we resist metaphors that are long-lived, perhaps over a century old? I am thinking, with Helen Wells (University of Bradford) and her narrative biographical work with women with dementia who live alone, about gender and power relations in dementia discourse. Age, gender and cognitive challenge are a triple jeopardy. Its power is so strong, I believe, because ideas of dependence, passivity and loss have been affixed to this triad much earlier than when biomedical research began to influence the conceptualisation of the patient during the 1980s. Although it is the period of biomedicalisation that is mainly placed under scrutiny by dementia scholars (and certainly the process of biomedicalisation is first in line to be blamed for removing the patient’s personhood and identity), scientists and practitioners live under the same horizon of language as the rest of us – in a society that values cure so much higher than care. Such neoliberal societies favour research into pharmacological intervention – enhanced by funding strategies as well as charity policies. It is this cultural climate that perpetuates the notion of the ‘patient’.

The question remains: how can we achieve change in such a culture? By working against century-old metaphors and attitudes earlier than during the degree course, earlier than in the classroom: for example with the picture book. Applying literary criticism to children’s literature is worthy of an analysis in its own right. But what can be said is that this genre addresses various readerships and tells the truth on a range of levels. Pictures do not force one view onto the reader. They offer several possible perspectives on the illness experience, as they rely on interpretation from the onlooker situated within their own world of experience. Elizabeth Caldwell (Lancaster University) carefully elaborated on how ‘a poetics for children requires a delicate rendering of hope and honesty’. Like Frezza and Steen engaging the audience in small group activity to discover the dynamics at play, Caldwell’s intervention interrogated the kind of messages held in visual form – and how the information accepted or perceived may rely on the context in which it is absorbed.

A lot is troubling when thinking about representation and the cultural narratives that do not match those of the patient. How can we change ‘across the board’, as Tony Britton put it, people’s perception of the illness? Meet and enable people with dementia; meet and support their caregivers. Get to know the culture of care, a different world of experience. Articulate what you witness in these encounters: to help create a new world – of research and care.

Martina Zimmermann trained as a neuropharmacologist. She has explored how caregivers as compared to patients write about their experience with dementia, in The Poetics and Politics of Alzheimer’s Disease Life-Writing (2017; open access) and has also published on the role of metaphor in dementia discourse in Literature and Medicine (2017; open access). Her forthcoming second book studies the dynamics between scientific and literary dementia narratives. It reflects on the century-old dichotomy between loss and gain in dementia and explores the role of biomedicalisation in dementia discourse developments. @MZimmLitSciMed

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