Created Out of Mind: shaping perceptions of dementia

We’re feeling motivated and excited as Created Out of Mind begins to open up new conversations with the public that help shape perceptions of dementias and the arts. Our abstract mission statement is starting to take solid form.  

Launched in October 2016, Created out of Mind are the second residents of The Hub at Wellcome Collection in London. I lead an interdisciplinary team of scientists, visual artists, musicians, broadcasters, clinicians and carers. 

Who’s who in our core team

We benefit from the diverse expertise of a team including: 

• Caroline Evans, project consultant 
• Paul Camic, psychologist, Canterbury Christ Church University
• Charlie Murphy, visual artist
• Julian West, creative musician, Royal Academy of Music
• Fergus Walsh, BBC medical correspondent
• Gill Windle, social scientist, Bangor University
• Philip Ball, science writer
• Nick Fox, neurologist, UCL Dementia Research Centre.

What we’re trying to do

We aim to reaffirm the value of people living with dementias and their individual experiences. 

Taking the lead from conversations with people who have dementia, we want to enrich current perceptions and representations of their experiences.

And we want to demonstrate the power of the arts in communicating the personal stories and scientific realities of dementia – a more powerful medium than any blood test, brain scan or histogram. 

How being in the Hub helps

The Hub, a unique office-meets-exhibition-meets-social space, is very much a part of this process. Being able to host the Rare Dementia Support groups here has been invaluable to our work.  

It means the Hub has been constantly filled with music, poetry and visual art both created, and influenced by, people living with dementia. For team members who are less familiar with the people and conversations which inspired our project, support group meetings  have been the times when the emotional heart of our residency has shone through.

The Hub has enabled a new way of working. I’ve been inspired to create and experiment in new ways, as I’m sure my team has, and to value the process and experience as much as the outcomes. This freedom, plus the expertise and resources available at Wellcome, means that ideas have thrived to become fully fledged projects. 

What we’re working on

Two research themes have emerged.

People and Perceptions

We’re exploring representations of dementias in everyday stories – from personal accounts, media, historical and medical texts to music and fiction – and using these to help shape the current dementia narrative. Some of these projects include: 

• Metaphors for the mind. We will collect the visual, textual and linguistic metaphors used to describe dementias and give people affected by dementias the opportunity to respond to these descriptions. By integrating the unique voices of people living with dementias into public and scientific descriptions, we can help inform more inclusive representations.
• A story of dementias. Working with the Wellcome Library, we will explore how ideas, attitudes to and perceptions of dementias have been documented from the 19th century to the present day. We will contrast the perspectives and judgements of dementias from a variety of historical accounts – both traditional medical texts and lived, personal experiences. 

In the Moment

Can the arts be helpful in finding ways for all of us to experience ourselves ‘in the moment’? 

We'll explore how people living with and without dementia respond to different experiences, such as seeing art or hearing music. We will measure these responses to assess the value of artistic interventions, and to stimulate new ways of thinking around how we perceive and present art. Some examples are: 

• Music for Life 360. Music for Life brings together professional musicians, care staff and people living with dementia through interactive music sessions. We'll apply qualitative and machine-learning approaches to examine the interaction between a musician and a person with dementia. This will help us to capture accurate data and develop tools to measure participants’ responses, and to identify correlations between musician and participant behaviours, for example their motivation to be involved in the session.
• Dementia-eye view. We’ll examine how people with dementia-related visual impairment, and their carers, navigate galleries, museums and other public spaces, including Wellcome Collection. Using wearable sensors and audio recordings, we'll see if we can measure patterns of movement and the difficulties they encounter to guide the development of dementia-friendly public spaces.

What’s next for Created Out of Mind?

Many of our projects are underway and we will be leading a programme of public events where people can explore dementia stories and participate in creative activities.

This starts with ‘The way I see it’ on 11 May at Wellcome Collection, a public discussion about how dementias are represented in media, music and narrative and how we might open up new perspectives about dementia through these platforms.

We are all likely to be affected by dementias in some way in our lifetime, and we aim to open up new dialogues that capture the depth of dementia experiences. We hope to continue this important work for a long time, and also to leave a legacy of understanding about dementias that is embodied in the design and management of public spaces, starting with Wellcome Collection. 

The Hub Award

Applications for the next Hub Award are open. The deadline for preliminary applications for  the 2018-20 collaborative residency is Friday 7 July. 

Full details about eligibility, what we offer and how to apply are on the Hub Award scheme page.